I haven't written for quite a while, for my standards anyway, and I miss it. It is very true for me that as soon as I get the' words out, my soul is lighter.
I found out yesterday from my GYN doc, possibly the best and sweetest on this planet, that the dizziness I suffered/suffer can not be related to hormones. Also, she informed me that she will not let me increase any hormone I'm on nor add any. The risk of stroke skyrockets. She told me to call her next week after I see my NEURO, but that she thinks it sounds like I need to see an ENT doc. So, at least I know now that my episodes are unrelated to the perimenopause, any timing was coincidental.
I can feel myself struggling lately. And further, I know I'm not taking proper care of it, of myself. I know why. It will be and is so unpleasant and messy and sad. So I continue to listen to music and books and fill my mind with other stories of other people. I don't know if its the holiday season making me feel down again or not but, I'm even having those wretched nightmares again. The ones where my beloved family member stalks me trying to murder me. Sometimes succeeds. I tell myself, oh I really love hearing the Christmas music all day. And, Oh, I'm almost at the end of this audiobook and I've just gotta know if...blank blankety blank ... happens. Untrue. All of it. Well, true to the degree that I do love those things but, right now they are my crutches. I am struggling, using them to keep my mind occupied. Even though I understand this to be the case, I am having trouble doing the correct self-care thing and turning everything off and just being with myself. I know it will be good for me. I'm scared of it. It will suck. I'm not done hating what has happened to my life. And, even though sometimes I can do it fine, I don't want to face the jealousy I feel when I look at most healthy folks. So, it has been said that admitting the problem is the first step. Hello. I'm Marie, and I'm not happy. Not actually ingesting any chemical to help me feel happy or numb but, am doing other behaviors to prevent me from facing it head on. There. One step taken. That is all I can do at THIS time.
I have a migraine more often than I don't. I'm sure that is adding to the sadness I feel. I gotta say, living with them, and so often, is just awful. In my imagination, I can turn the migraine into a pill and send it to folks who I deem deserve it like drug dealers, human traffickers, rapists, etc. They should live like that, in pain as punishment for what they do. Not me. Yes. I am the judge in my imagination.
I want to enjoy the season but, it feels especially difficult this year. Probably because of a combo of reasons. I dearly miss my best friend. There are no Christmas things in our home because I haven't used the energy to do it, and I justify this by knowing that we will be gone from home for a week soon and will see plenty when we travel. I am living a sort of half life with these headaches. Oh, and I'm in pain, don't forget the pain. Also, not doing any exercising. Such a big combo. Who orders that kind of combo meal? Crazy folks, that's who.
Well, I am thankful that I have the insight to recognize all of the above. Proof my soul has not gone to the dark side. Cleansing and peace are within reach. I just have to muster the courage to reach. And banish the fear of falling. Thankful that I am protected from the elements, fed, and loved. And that sometimes, the migraine medicine does work a bit.
Have happy, happy days.
Friday, December 12, 2014
Tuesday, November 18, 2014
I was ahead of myself
So yesterday began feeling my new normal again. And I was feelin' fine with it. In fact it had been sitting here writing to a friend on PatientsLikeMe and got up to do one more small chore before lunch, then nap. Not doing too much or too quickly, I know how to play this game. I got my bagful of red peppers out of my fridge drawer (they were on sale so I loaded up) and was preparing to wash and then roast them for culturing later. Put the bag on the counter and the room swam. And swirled, and swished. I was holding onto the counter by then. Vision went black for the count of 2. I sort of melted to the kitchen floor, thanks to holding the counter. Didn't land hard or weird or hit my head. Too weak to get up, and even down there still crazy dizzy. Butt schooched across the kitchen to my living room to my wheelchair. Climbed in in, instantly nauseated. Back to the kitchen for a ginormous bowl in case of sickness. Then to the couch. Had presence of mind to grab cell phone off the breakfast table and take to the couch. World still spinning, even with eyes closed. Was not headache based. Constant dizziness and nausea and profound weakness. Did not wait to call for help. Left messages with both neighbors. Decided if no reply by certain time, would call Tim at work. Neither neighbor was home but, one came over about 40 min later and cared for me. Breathing was quite shallow, but I think that's because it was scary. She brought water, cold cloth, and got me into bed. Brought me medicine and heating pads and she called Tim to let him know to check me.
Many times in these years I have wanted, longed for someone to take care of me that way but, yesterday was the first time I could not physically manage alone.
I did sleep, and world was still spinning when I moved my head upon waking. We have walkie-talkies for geocaching and used them for "please bring me some food" requests. I did not spend any time out of bed.
No more dizziness but, very weak. Moving around quite like a tortoise. Already medicated for headache. 9am now. Have my therapist appt in a couple hours. Glad she understands cavewoman language.
Tim thinks maybe due to hypostatic blood pressure, when blood pressure plummets from moving head up and down too rapidly. The hours and hours of dizziness bother me. Not worried or afraid but, its new.
More grateful than I can say that God put someone close by in my world to physically come to me. It is truly scary to be alone and need help. Not something a 45 yr old expects to face.
Tim just called to check and hearing me speak asked me to cancel my appt and please not leave the house. That's how bad I sound. lol
So grateful for those who love me.
Prayers of thanksgiving for sweet Vanessa who saw me at my worst and neediest, a true friend.
Many times in these years I have wanted, longed for someone to take care of me that way but, yesterday was the first time I could not physically manage alone.
I did sleep, and world was still spinning when I moved my head upon waking. We have walkie-talkies for geocaching and used them for "please bring me some food" requests. I did not spend any time out of bed.
No more dizziness but, very weak. Moving around quite like a tortoise. Already medicated for headache. 9am now. Have my therapist appt in a couple hours. Glad she understands cavewoman language.
Tim thinks maybe due to hypostatic blood pressure, when blood pressure plummets from moving head up and down too rapidly. The hours and hours of dizziness bother me. Not worried or afraid but, its new.
More grateful than I can say that God put someone close by in my world to physically come to me. It is truly scary to be alone and need help. Not something a 45 yr old expects to face.
Tim just called to check and hearing me speak asked me to cancel my appt and please not leave the house. That's how bad I sound. lol
So grateful for those who love me.
Prayers of thanksgiving for sweet Vanessa who saw me at my worst and neediest, a true friend.
Monday, November 17, 2014
This is more like it
So, just three days ago I was writing about being on guard for the other shoe to drop. It did. And here is my epiphany. I am fully at a state where this level of pain is what feels normal to me. I have lived with this long enough and survived well enough that I am even more at ease when I have some symptoms as opposed to none. When there are none, I'm on guard, which is stressful. I actively prevent stress where I can so, having no symptoms is counterproductive. When there are some, I successfully cope. When they get worse, I respond successfully to that as well. And I have lived through many a time when I was in pain such that I thought I would die. And I haven't ever died. So, this level of medium pain is normal for me. It is my usual self now. I have copied this from a FaceBook page and am pasting it here for information sake.
I do understand, for those who are purists, this is incredibly unscientific. But, unfortunately, there are so few ways to relate pain since it is so subjective. What I was feeling for some weeks was probably about a 2-5 level. Yesterday though, I got to about 9. Today, still being 9 am, I am already at 8. But, delightfully enough, I do not feel discouraged, dismayed, hindered, or even down. I just feel normal. I feel empowered with the knowledge that I know how to live with this. I feel confident that I control as much as I can and that my strength of faith will carry me the rest of the way. I feel fine. Not my nerve endings, mind you. My heart and my mind. My nerve endings are mewling and whining like kittens and puppies do when they are especially hungry or lonely or scared. When they start howling and yowling (levels 12+) as if they are in pain, I will still know my faith, although my personal power will be diminished because it affects my thinking so much. I might, because I have before, forget that I have some power. I probably will be confused about, well, everything. But, my faith will remain. And that, I can have absolute confidence in. That, I would get tattooed on me if ever I were to do have one done. The word FAITH. About that, I am never, ever confused. That is why, no, not why but how I survive.
Feeling thankful that I am using my coping muscles successfully today. Enjoying remembering the days recently when I didn't need them but, grateful that I can rely on them to work for me now. Thankful for my faith.
Have happy, happy days!
Friday, November 14, 2014
Grateful, but unsure
I am feeling pretty well lately. For the last few weeks, anyway. And I am grateful. Deeply grateful. However, with this gratitude is sort of a confusing mix of "when will the other shoe drop" and general "I really don't have any idea what's going on". I do realize that those two confused feelings are not helpful and indeed can cause stress if I focus on them so, I am writing here to avoid focusing. Historically, in very cold weather, I hurt. A lot. I do remember last winter and my struggle through it but, the rest of the info which I do not remember is recorded in various journals. Cold is very painful for me. I know this to be a fact. Well, this week the temperatures have been at or below freezing most days, climbing only to the high 30's. Dry, but cold. And I am not needing my wheelchair. Some of the time, I am not even needing my cane. This is unheard of. Frankly, it makes me nervous, if I allow it, because I wonder when the crap-storm will hit. Will I end up crawling to my chair suddenly one day, since I don't have my cane? This is the benefit of being in my home full of furniture, hopefully, that won't happen.
The single only difference in my behavior this winter is that I am staying indoors. I have let go of the guilt of walking the dog and I don't do it. If Tim walks him before work, he gets a walk, if not, he doesn't. I know this isn't great or ideal for him but, in my journey for some relief for myself, this is the pit stop right now. So, maybe since I am keeping myself very, very climate controlled, that is making a difference. I don't know. I did go out to an appointment one morning in the cold but, I didn't suffer during or after. My pain levels are lower than normal for me. Fatigue is the same but, headaches are less frequent. I have become disciplined about my naps again and take a med before nap time and before bedtime to help with falling asleep. Also, I am diligently including kefir and cultured veggies in my daily diet and have been for 9 months. Those are the only things I'm doing differently than last year, this same time.
So, in my natural human yearning to understand what I am going through, I have no idea. I long for an answer to the question about why I feel better now. My pain does not go above a 4 these days, which is remarkable and a blessing. Yet, I cannot help but be on guard for when a flare will hit and it will skyrocket to an 8. It isn't healthy to investigate that too far because, I can easily get into self-blame. If I do something that changes it, anything that changes it, and I'm able to pinpoint that thing, then the pain is my fault. So, really, it is hurtful to try to identify the reason, and especially hurtful to micromanage my movements so carefully. I need to just live. Let myself live. But, it feels prudent to be on guard. For example, it would be foolish to leave my home without a wheelchair now-days. I have learned from those kinds of mistakes, no matter how low my pain is inside this house.
Thankful for relief from pain. Praying for the ability to just enjoy each moment without worry about how I might feel in the next. Wanting to wallow in the wellness. Well, the relative wellness. I still cannot dance through and entire song in my living room. Lord, let me stay aware but not tightly guarded and not micromanaging all my human behaviors. Let me just enjoy the relief and turn away from distress at the change I think is coming.
Have happy days!
The single only difference in my behavior this winter is that I am staying indoors. I have let go of the guilt of walking the dog and I don't do it. If Tim walks him before work, he gets a walk, if not, he doesn't. I know this isn't great or ideal for him but, in my journey for some relief for myself, this is the pit stop right now. So, maybe since I am keeping myself very, very climate controlled, that is making a difference. I don't know. I did go out to an appointment one morning in the cold but, I didn't suffer during or after. My pain levels are lower than normal for me. Fatigue is the same but, headaches are less frequent. I have become disciplined about my naps again and take a med before nap time and before bedtime to help with falling asleep. Also, I am diligently including kefir and cultured veggies in my daily diet and have been for 9 months. Those are the only things I'm doing differently than last year, this same time.
So, in my natural human yearning to understand what I am going through, I have no idea. I long for an answer to the question about why I feel better now. My pain does not go above a 4 these days, which is remarkable and a blessing. Yet, I cannot help but be on guard for when a flare will hit and it will skyrocket to an 8. It isn't healthy to investigate that too far because, I can easily get into self-blame. If I do something that changes it, anything that changes it, and I'm able to pinpoint that thing, then the pain is my fault. So, really, it is hurtful to try to identify the reason, and especially hurtful to micromanage my movements so carefully. I need to just live. Let myself live. But, it feels prudent to be on guard. For example, it would be foolish to leave my home without a wheelchair now-days. I have learned from those kinds of mistakes, no matter how low my pain is inside this house.
Thankful for relief from pain. Praying for the ability to just enjoy each moment without worry about how I might feel in the next. Wanting to wallow in the wellness. Well, the relative wellness. I still cannot dance through and entire song in my living room. Lord, let me stay aware but not tightly guarded and not micromanaging all my human behaviors. Let me just enjoy the relief and turn away from distress at the change I think is coming.
Have happy days!
Thursday, November 6, 2014
Feeling pretty well this fall
About a week ago, I struggled with a decision. I knew in my gut what I should do. I knew what my beloved wanted me to do. Yet, it was still hard to get a grasp on the actual deciding to do it. I found out that a medicine I have been on for 9 months has a rare side effect risk of severe and permanent visual field loss. The eye doctor was cavalier about it saying "oh, if I had rheumatoid arthritis, I'd take it." Not bothering to read my chart to see that I, in fact, don't have RA. Not bothering to know what I have. Not taking any time to care about what the risk means to me. Just explaining callously that by the time they see damage in an exam or I see problems in my vision, it will be irreversible and untreatable damage which could get worse whether I stop the drug or not. Certainly, the longer I'm on the drug, the higher the risk just because of frequency of incidence in my body. So, I decided to go off of it. I can't tell that it has helped me in these 9 months. That is the really hard part about this disease. It is hard to measure. I do know that I came out of last winter's flare after I went on it, but likely, I might have done anyway. Also, my beloved reminded me, summer of 2013 was far better for me than this summer. We were geocaching every Saturday for at least 6 hours a day. This year, I only went once so far, which was 2 weeks ago. So, in general, I know I am not better than I have been. I know things are worse, or harder, if you will. The decision struggle is just in the dashed hope. I embraced trying this medicine after not having tried any for some years. It didn't pan out. It is unlikely that I will suffer any ocular damage from only being on it 9 months. Except for the disappointment. But, I delight in the visual world. For me to lose large chunks of my field of vision including everything else I have lost, would be too much. So now, I pray some young scientist comes up with the new, next treatment for me. Preferably chemical free, but not necessarily.
The irony is this. I have had better days since I went off of it 5 days ago. I didn't know how best to stop, so a call went out to my rheumatologist. The nurse returned the call and I informed her of my decision, my reasons, and my question as to how to properly stop. Cold turkey? Titrate down? Never got another call back about that so, it has been a cold turkey situation and it has been fine. In fact, better than fine. The last 2 days, it has stormed and rained here pretty consistently. And, wait for it, I have felt ok. (Two sentences which have never been written together.) It has been remarkable. I even had to go out to an appointment yesterday, and I did fine. Yes, I was uncomfortable, but, not in the same way I can remember being during chilly rainy weather. Makes me go hmmmmm.........
Grateful to even have the opportunity and the funds to try another medicine. Grateful to be able to make the decision to go off of it because of preference rather than finance or intolerance. Grateful that I did not plummet into a black hole of symptoms which would then make me question the decision. Grateful.
Have happy days.
The irony is this. I have had better days since I went off of it 5 days ago. I didn't know how best to stop, so a call went out to my rheumatologist. The nurse returned the call and I informed her of my decision, my reasons, and my question as to how to properly stop. Cold turkey? Titrate down? Never got another call back about that so, it has been a cold turkey situation and it has been fine. In fact, better than fine. The last 2 days, it has stormed and rained here pretty consistently. And, wait for it, I have felt ok. (Two sentences which have never been written together.) It has been remarkable. I even had to go out to an appointment yesterday, and I did fine. Yes, I was uncomfortable, but, not in the same way I can remember being during chilly rainy weather. Makes me go hmmmmm.........
Grateful to even have the opportunity and the funds to try another medicine. Grateful to be able to make the decision to go off of it because of preference rather than finance or intolerance. Grateful that I did not plummet into a black hole of symptoms which would then make me question the decision. Grateful.
Have happy days.
Monday, October 27, 2014
Inside a situation
This weekend, I made special cookies and cream ice cream for my sweetheart. His favorite flavor. His favorite treat, aside from good chocolate cake. I used milk kefir and coconut sugar. It also has real heavy cream, and good vanilla extract and real Oreos. But, no, it doesn't taste like regular ice cream. It is tangy, which is unexpected. I can easily get past the unexpected and move on to enjoying it, even though it is different and not sweet, like it's expected to be. Sweetie could not. He thanked me for making it and said he was sorry but, he just didn't like it at all and that there was now more for me. My feelings weren't hurt. I am not emotionally invested in my food, I just wanted him to have some of the super nutritious kefir, that's all.
Then it led to a discussion about the fact that I have changed my diet so drastically so many times in order to follow hope that one of the changes would ease the pain. I explained to him that I can get used to and tolerate food that is unusual tasting if I think there's a chance that it will help symptoms. You would not believe what I am willing to do to ease symptoms. He has not ever had to do that. He has never faced food and said, ok, what can I change so that this stops or starts me feeling a certain way. He isn't plagued with anything wrong inside him. Thank Our Lord.
I finally understood why he doesn't understand what this is like for me. I finally get why friends and family can never wrap their heads around it either. It is not only the addition of symptoms in my life that make me different, it is the fact that I have lost something they have not lost. My health.
He has not been a person who has lost something who is desperately trying to get it back. Here is the analogy I can think of. I don't know what it would be like to be bald. Unwillingly bald. I have no idea what lengths I'd go to in trying to regrow my hair. I don't know what it's like to be truly homeless. What might I resort to? Or really, truly hungry. Would I steal? Would I maybe even hurt somebody else if it meant filling my belly? Or just some bites of food? Would I? I don't know. I can't know. I have never faced it. Would I fight to save an unborn baby in me instead of saving myself? I have no idea. I cannot say unless I'm in the situation. I could guess, but that would just be a guess. I can't really know what that's like. Just like most everyone I know has never faced life in pain. They see what I do to try to live within my limits, but witnessing is not the same as knowing. I have eaten and drank some stuff I can hardly believe, just to try to live without this, or to make it less.
So, it really shouldn't surprise me that he doesn't want to eat stuff which he just learns to tolerate. But, I will gladly continue to do so. Most days, I think if you ask me, I do have some hope that my situation could get better. Unfortunately, I also think it could get worse. But, I try to hang my hat on the better hook and there is more ice cream for me. So I will continue to spend a large chunk of my daily allotment of energy preparing food which isn't that hard to prepare, if you had predictable strength and stamina. For me, it is hard. For me, it is a sacrifice. It means choosing to make special food or cleaning my bathroom. I am limited. So very limited. Everyone wants a clean bathroom, don't they?
Have happy days!
Then it led to a discussion about the fact that I have changed my diet so drastically so many times in order to follow hope that one of the changes would ease the pain. I explained to him that I can get used to and tolerate food that is unusual tasting if I think there's a chance that it will help symptoms. You would not believe what I am willing to do to ease symptoms. He has not ever had to do that. He has never faced food and said, ok, what can I change so that this stops or starts me feeling a certain way. He isn't plagued with anything wrong inside him. Thank Our Lord.
I finally understood why he doesn't understand what this is like for me. I finally get why friends and family can never wrap their heads around it either. It is not only the addition of symptoms in my life that make me different, it is the fact that I have lost something they have not lost. My health.
He has not been a person who has lost something who is desperately trying to get it back. Here is the analogy I can think of. I don't know what it would be like to be bald. Unwillingly bald. I have no idea what lengths I'd go to in trying to regrow my hair. I don't know what it's like to be truly homeless. What might I resort to? Or really, truly hungry. Would I steal? Would I maybe even hurt somebody else if it meant filling my belly? Or just some bites of food? Would I? I don't know. I can't know. I have never faced it. Would I fight to save an unborn baby in me instead of saving myself? I have no idea. I cannot say unless I'm in the situation. I could guess, but that would just be a guess. I can't really know what that's like. Just like most everyone I know has never faced life in pain. They see what I do to try to live within my limits, but witnessing is not the same as knowing. I have eaten and drank some stuff I can hardly believe, just to try to live without this, or to make it less.
So, it really shouldn't surprise me that he doesn't want to eat stuff which he just learns to tolerate. But, I will gladly continue to do so. Most days, I think if you ask me, I do have some hope that my situation could get better. Unfortunately, I also think it could get worse. But, I try to hang my hat on the better hook and there is more ice cream for me. So I will continue to spend a large chunk of my daily allotment of energy preparing food which isn't that hard to prepare, if you had predictable strength and stamina. For me, it is hard. For me, it is a sacrifice. It means choosing to make special food or cleaning my bathroom. I am limited. So very limited. Everyone wants a clean bathroom, don't they?
Have happy days!
Sunday, October 19, 2014
Now this is just silly
In defense of my behavior, I point out the pain.
If you had walked in on me in my kitchen just now, as my husband just did, you'd have seen the following: Me, standing at my island, straining my precious milk kefir (as I do every day that I have the energy and strength). The thing is that it is still mostly liquid, since I didn't mess with the ones I want to be cheese. And I do try to be neat. But, sometimes liquids splash. Sometimes there are little puddles on counters or drops that end up on fingers or arms. You would have seen me grooming my arms and fingers like a cat to get all that precious milk in me. AND, you would have seen me bend over and lick my counter tops. It's true. I want to get as much of any good thing in me as is humanly possible. I did scrub my counters beforehand, as I always do when I mess around with my bacteria. But, I'm not ashamed, I licked my counter top like it was a cookie dough spoon. Cleaned it as well as my dog would have.
As an observer, I can see how this looks to the untrained, un-pained eye. It does not taste good. Milk kefir to me, is a bit like tofu in that it tastes like whatever you combine it with. (This morning's breakfast was a pumpkin pie smoothie, for example.) So it isn't like licking chocolate frosting off my arms and fingers. But, I did it by gosh, and I will rinse and repeat. I want this to change. This life. This painful s%#*! So, if good bacteria help at all, and I can feel that they do, I will learn the grooming from my sweet cat and the slopping up from my sweet dog, and I WILL get that good stuff in my belly. After all, who am I impressing??? Just lick it up. That's what I'd tell a child to do if I knew the surface had been cleaned.
I felt like I needed to be honest and transparent about my kitchen behaviors with y'all. Thank you for listening.
Have happy happy days
If you had walked in on me in my kitchen just now, as my husband just did, you'd have seen the following: Me, standing at my island, straining my precious milk kefir (as I do every day that I have the energy and strength). The thing is that it is still mostly liquid, since I didn't mess with the ones I want to be cheese. And I do try to be neat. But, sometimes liquids splash. Sometimes there are little puddles on counters or drops that end up on fingers or arms. You would have seen me grooming my arms and fingers like a cat to get all that precious milk in me. AND, you would have seen me bend over and lick my counter tops. It's true. I want to get as much of any good thing in me as is humanly possible. I did scrub my counters beforehand, as I always do when I mess around with my bacteria. But, I'm not ashamed, I licked my counter top like it was a cookie dough spoon. Cleaned it as well as my dog would have.
As an observer, I can see how this looks to the untrained, un-pained eye. It does not taste good. Milk kefir to me, is a bit like tofu in that it tastes like whatever you combine it with. (This morning's breakfast was a pumpkin pie smoothie, for example.) So it isn't like licking chocolate frosting off my arms and fingers. But, I did it by gosh, and I will rinse and repeat. I want this to change. This life. This painful s%#*! So, if good bacteria help at all, and I can feel that they do, I will learn the grooming from my sweet cat and the slopping up from my sweet dog, and I WILL get that good stuff in my belly. After all, who am I impressing??? Just lick it up. That's what I'd tell a child to do if I knew the surface had been cleaned.
I felt like I needed to be honest and transparent about my kitchen behaviors with y'all. Thank you for listening.
Have happy happy days
Thursday, October 16, 2014
Under other control
I really have no idea how many folks read this blog or who they are. Several have identified themselves to me but, beyond them, I don't know. I don't promote it, I do post a link to it on social media but, I have no need to advertise or promote. I'm not selling anything. Just putting my story out there. The extra energy it would take to figure out how to further spread it is beyond my scope. So, if you know somebody you think my words may help, please do share. That's the reason I'm writing to begin with.
I had an epiphany about my life the other night at about 12:30. It was a day that I could only be out of my bed for about 4 hours due to severe symptoms. Here is what I realized:
I think all of my life up to the bisection (the onset of this disease on 3/12/05) was preparing me for the changes and adaptations of living with fibromyalgia.
I have never really lived "free". Of course, not in the sense of slavery, don't misunderstand. My childhood was blissful. Then, in my early adolescence, I worked. There were expectations of me that were sudden and different and I had to just figure it out as I went. I worked hard through my teen years and went to college, still working, and looking toward the horizon when I could be a bit more relaxed from all the work.
But, I was too naive and I married a controlling man who abused me. I absolutely accept my share, but only my share, of the relationship. I was controlled by him from the word go. This was '91-'97. No freedom. We're talking about the checking the odometer and walking on eggshells kind of control.
I managed, with my army of angels, to get away with my life and my body in one piece in November 1997. After that, I was friends with someone who had clear dreams of his own, and since I had none of my own, after all I had just escaped from prison, his entered me through osmosis or something. And, as time went on, he controlled me too. Some of this is because he sort of swooped in with his agenda before I could really get my feet on the ground to figure out what mine might be. In this sense, I was still controlled. I was not fully free. I lived with him in a roommate situation and didn't have my own car most of the time, pooled my money with him, and got the Spanish Inquisition if I wanted to date somebody. (Later, I realized that this is because he wanted me for himself and we did become engaged. Everyone makes mistakes.) I was not free to decide. When I broke it off, and then months later when I moved out, I actually moved to a weekly rate motel just to be physically free of him.
During this time, I had enrolled in my local college and was determined to finish my undergraduate degree. I also was in a self-defense class at the YMCA. (That class is where I met my sweetheart.)
I moved into my first apartment of my own in Aug. '04. So, I was tied to the concept of still working through school but, I was more free than I had ever been.
I moved on to a relationship which is the best of my life where control is not an issue. Not at all. However, I still wanted to finish school and was not where I wanted to be in my own accomplishments, I wanted to be more. I didn't feel free. I felt driven. I was still in school. Slogging through college as an adult is slow and arduous, especially while working.
The spring semester of '05 began and I was a full-time student, working part-time. Not free. Then fibromyalgia hit in March, on the 13th to be exact, and every single other day before then should have prepared me for how "not free" I'd be in my years to come.
My life is a dictatorship. My body, the dictator. If I rebel against the command, I pay a higher price for the disobedience. I get no say, no vote. No democracy here. I have sometimes been able to separate me, the inside Marie, from my body, the sick Marie. I look at her and just think "Damn-it. Again with the naps? Really? There's other fun stuff we could do today.... even if not fun, just not sleeping life away..." But, she absolutely is in control. It is required. She dictates it. So, again, I live under the control of another. Another person, another whatever, but not myself. Not Marie. If I think of dictators in history, it really is a good comparison. They are ruthless. They are just a little bit crazy and quite unpredictable. There seems to be some underlying strategy but, no one understands it. Check. Check. Check. Check. Also, they don't care if they kill you. Check. This is what it feels like. It does not feel like my body is protecting me. It feels like it has turned. I know it is not healthy to see it that way so, I won't indulge in these thoughts long, but, just wanted to share the epiphany. I am not free. And my whole life of being not free has at least prepared me for coping. Prepared me for asking for help. Prepared me for losing my independence. Again.
So, in the dictatorship that is my existence, I will now attempt to put my laundry away. It has taken me 4 days to get it washed, dried, out to the living room, folded, and into the closet. I need only now to put it where it belongs. I will likely be told when to stop rather than deciding on my own when to stop. But there is this. Hope that I will finish it before the commander screams. And then I can do my little accomplishment happy dance. And that, my friends, my beloved, is what I live for. Teeny, tiny accomplishments. Let's all enjoy our accomplishments today, however big or small they may be. And be thankful for the day.
Have happy happy days!!!
I had an epiphany about my life the other night at about 12:30. It was a day that I could only be out of my bed for about 4 hours due to severe symptoms. Here is what I realized:
I think all of my life up to the bisection (the onset of this disease on 3/12/05) was preparing me for the changes and adaptations of living with fibromyalgia.
I have never really lived "free". Of course, not in the sense of slavery, don't misunderstand. My childhood was blissful. Then, in my early adolescence, I worked. There were expectations of me that were sudden and different and I had to just figure it out as I went. I worked hard through my teen years and went to college, still working, and looking toward the horizon when I could be a bit more relaxed from all the work.
But, I was too naive and I married a controlling man who abused me. I absolutely accept my share, but only my share, of the relationship. I was controlled by him from the word go. This was '91-'97. No freedom. We're talking about the checking the odometer and walking on eggshells kind of control.
I managed, with my army of angels, to get away with my life and my body in one piece in November 1997. After that, I was friends with someone who had clear dreams of his own, and since I had none of my own, after all I had just escaped from prison, his entered me through osmosis or something. And, as time went on, he controlled me too. Some of this is because he sort of swooped in with his agenda before I could really get my feet on the ground to figure out what mine might be. In this sense, I was still controlled. I was not fully free. I lived with him in a roommate situation and didn't have my own car most of the time, pooled my money with him, and got the Spanish Inquisition if I wanted to date somebody. (Later, I realized that this is because he wanted me for himself and we did become engaged. Everyone makes mistakes.) I was not free to decide. When I broke it off, and then months later when I moved out, I actually moved to a weekly rate motel just to be physically free of him.
During this time, I had enrolled in my local college and was determined to finish my undergraduate degree. I also was in a self-defense class at the YMCA. (That class is where I met my sweetheart.)
I moved into my first apartment of my own in Aug. '04. So, I was tied to the concept of still working through school but, I was more free than I had ever been.
I moved on to a relationship which is the best of my life where control is not an issue. Not at all. However, I still wanted to finish school and was not where I wanted to be in my own accomplishments, I wanted to be more. I didn't feel free. I felt driven. I was still in school. Slogging through college as an adult is slow and arduous, especially while working.
The spring semester of '05 began and I was a full-time student, working part-time. Not free. Then fibromyalgia hit in March, on the 13th to be exact, and every single other day before then should have prepared me for how "not free" I'd be in my years to come.
My life is a dictatorship. My body, the dictator. If I rebel against the command, I pay a higher price for the disobedience. I get no say, no vote. No democracy here. I have sometimes been able to separate me, the inside Marie, from my body, the sick Marie. I look at her and just think "Damn-it. Again with the naps? Really? There's other fun stuff we could do today.... even if not fun, just not sleeping life away..." But, she absolutely is in control. It is required. She dictates it. So, again, I live under the control of another. Another person, another whatever, but not myself. Not Marie. If I think of dictators in history, it really is a good comparison. They are ruthless. They are just a little bit crazy and quite unpredictable. There seems to be some underlying strategy but, no one understands it. Check. Check. Check. Check. Also, they don't care if they kill you. Check. This is what it feels like. It does not feel like my body is protecting me. It feels like it has turned. I know it is not healthy to see it that way so, I won't indulge in these thoughts long, but, just wanted to share the epiphany. I am not free. And my whole life of being not free has at least prepared me for coping. Prepared me for asking for help. Prepared me for losing my independence. Again.
So, in the dictatorship that is my existence, I will now attempt to put my laundry away. It has taken me 4 days to get it washed, dried, out to the living room, folded, and into the closet. I need only now to put it where it belongs. I will likely be told when to stop rather than deciding on my own when to stop. But there is this. Hope that I will finish it before the commander screams. And then I can do my little accomplishment happy dance. And that, my friends, my beloved, is what I live for. Teeny, tiny accomplishments. Let's all enjoy our accomplishments today, however big or small they may be. And be thankful for the day.
Have happy happy days!!!
Monday, October 13, 2014
My poor little body
For the last 2 days, and so far today, there has been stormy, cool weather as we change from summer to fall. My body is reacting quite badly, as is per usual during season changes. I spent all of Saturday (our 6th wedding anniversary) and all of Sunday in bed. One of the few good things about having gone mostly grain free in my diet is that now, when I am in bed and forced to fast because of inability to get myself to food, I don't suffer as much, or at all. I used to get a horrible migraine and feel starvation if I went only 5 hours without food but both days this week, it was more than 9 hours between my breakfast smoothie and the next time I ate or drank anything. I would have if I had had a butler or ladies maid waiting on me, I'd have ordered some food and water, especially water. But, I didn't have presence of mind for it. And during times when my brain is so thoroughly erased, it is actually more effort to ask Tim to get me food and tell him what I want. That's how hard it is to think. Like trudging through sludge.
Today is no different. The exception is that I've been awake 2 and a half hours and have at least gotten a couple of things done. I am doing chores in 10/20 mode. Ten minutes of activity, in my wheelchair mind you, followed by 20 minutes of rest. If I stray into the 15/15 mode, I pay exponentially for it.
Unfortunately, I realize now that I haven't given the animals clean water yet this morning. Now, I can't. There's no strength left to do it. I have to sleep again and hope to regenerate some more.
Anyway, the little observation I had while I got into the bath about an hour ago was this: I actually feel sorry for my body. I don't feel sorry for myself, it's not that. It's as if my body were a separate thing, like a pet, or a friend's body, and I feel so sorry for it. For not being able to ease its suffering, for just sitting by and watching. I can't help it feel better. All I can do is sleep so I'm not aware of its suffering, if I can stay asleep. Also, that makes it so I, this observer Marie, sleep my life away, not getting to enjoy, not getting to really live my days, my years. Just asleep as opposed to agony. Yes it's an easy choice but, a crappy one. My poor little body. I wish I could help it.
Grateful today that I live with a healthy person. Pray that I can keep giving my worries about my future to God to hold. After and during days like these, those worries can terrify me. So grateful to have a warm bed in a safe home with someone who loves me here some of the time.
Have happy days!
Today is no different. The exception is that I've been awake 2 and a half hours and have at least gotten a couple of things done. I am doing chores in 10/20 mode. Ten minutes of activity, in my wheelchair mind you, followed by 20 minutes of rest. If I stray into the 15/15 mode, I pay exponentially for it.
Unfortunately, I realize now that I haven't given the animals clean water yet this morning. Now, I can't. There's no strength left to do it. I have to sleep again and hope to regenerate some more.
Anyway, the little observation I had while I got into the bath about an hour ago was this: I actually feel sorry for my body. I don't feel sorry for myself, it's not that. It's as if my body were a separate thing, like a pet, or a friend's body, and I feel so sorry for it. For not being able to ease its suffering, for just sitting by and watching. I can't help it feel better. All I can do is sleep so I'm not aware of its suffering, if I can stay asleep. Also, that makes it so I, this observer Marie, sleep my life away, not getting to enjoy, not getting to really live my days, my years. Just asleep as opposed to agony. Yes it's an easy choice but, a crappy one. My poor little body. I wish I could help it.
Grateful today that I live with a healthy person. Pray that I can keep giving my worries about my future to God to hold. After and during days like these, those worries can terrify me. So grateful to have a warm bed in a safe home with someone who loves me here some of the time.
Have happy days!
Thursday, October 9, 2014
Involuntary sleep shift
I don't know really why this has happened, but I suspect it can partially be blamed for being on a cruise in the Pacific for 7 days and the time changes incurred. So, now I get 9 hours and a nap during the day. But, my 9 hours are between midnight and 9am. This is so screwy and unusual for me and frankly distressing that I have been resisting it for weeks. Now, I have decided to embrace the sleep. Whenever it finds me, I will open myself to it. The time of the day or night doesn't matter as much as the quality and quantity. So, don't come over for breakfast before 10am.
Just one more thing that I don't like, but, I'm gonna do the dance steps and follow along. Resistance being futile, and all.
Nap time now.
Happy days!
Just one more thing that I don't like, but, I'm gonna do the dance steps and follow along. Resistance being futile, and all.
Nap time now.
Happy days!
Saturday, October 4, 2014
Between them and God
Here is a thought that I put on my refrigerator. It has helped my attitude in many situations. I used to be very self-conscious about how conspicuous I looked, at my age, with a cane, or in a wheelchair, when there seemed to be nothing wrong with me. Well, that's over. Here is what I have come to know:
Whatever people think about me is none of my business.
There. Now, I don't care. People in my life who love me, truly love me and know my truth, think loving things about me. Also, whatever they choose to tell me, that is my business, but nothing else. Those other thoughts are between them and God. I am no more or less important to Him than each of His other children. Every single child has lessons to learn.
This is helpful because now: I don't care if I look like a homeless person when I go out because those clothes happen to be the ones that don't hurt me that day. If someone pities me, scorns me, or even prays for me, all of that is between them and God, and none of my concern. When a woman sees me climb out of my disabled plated car and continues to stare openly at me trying to see what disability I have, again, between her and God. Her bad judgement and obscene manners are none of my business. Yes, I could cop an attitude and let it ruin hours of my day but, really, why bother? She's being ruder than rude and answers to HIM for her behavior not me. None of my business.
I slept many more hours this week than I spent awake. Those who know my struggle understand I would not choose this as the way I would live, if I had choices. Any others who might label me lazy, or disbelieve my plight of fatigue, that is between them and God. He will find a way to put them on the road to love. If they resist that road, it is sad for them, and none of my business.
I, by the way, just got home from walking the dog! Yay, ME!!! Just a few days ago, I could not walk at all. AT ALL. What a roller-coaster this life of mine is. No, we did not walk for long, but I did get out of my house into the world and the beautiful day. My now healthy lovey dog is getting over his bug or whatever and had his tail held high. We are blessed.
Have happy happy days!!
Whatever people think about me is none of my business.
There. Now, I don't care. People in my life who love me, truly love me and know my truth, think loving things about me. Also, whatever they choose to tell me, that is my business, but nothing else. Those other thoughts are between them and God. I am no more or less important to Him than each of His other children. Every single child has lessons to learn.
This is helpful because now: I don't care if I look like a homeless person when I go out because those clothes happen to be the ones that don't hurt me that day. If someone pities me, scorns me, or even prays for me, all of that is between them and God, and none of my concern. When a woman sees me climb out of my disabled plated car and continues to stare openly at me trying to see what disability I have, again, between her and God. Her bad judgement and obscene manners are none of my business. Yes, I could cop an attitude and let it ruin hours of my day but, really, why bother? She's being ruder than rude and answers to HIM for her behavior not me. None of my business.
I slept many more hours this week than I spent awake. Those who know my struggle understand I would not choose this as the way I would live, if I had choices. Any others who might label me lazy, or disbelieve my plight of fatigue, that is between them and God. He will find a way to put them on the road to love. If they resist that road, it is sad for them, and none of my business.
I, by the way, just got home from walking the dog! Yay, ME!!! Just a few days ago, I could not walk at all. AT ALL. What a roller-coaster this life of mine is. No, we did not walk for long, but I did get out of my house into the world and the beautiful day. My now healthy lovey dog is getting over his bug or whatever and had his tail held high. We are blessed.
Have happy happy days!!
Thursday, October 2, 2014
Remembering the issues
This is one of the most insidious parts of the fibro syndrome. If you don't have a specific symptom for a while, it is actually surprising and disturbing when it happens again. It's like I'm able to forget that pain was THAT bad or that fatigue (which is what I have now) is so severe. Otherwise, I'd think I were really quite ill.
Yes, I took a long road trip on the weekend. Yes, it did wear me out. Yes, I did take care of myself, taking naps, getting proper food, not overexposing myself, etc.
Yesterday, I was only able to be out of my bed for 4 hours out of 24. Today I have been up trying to do chores for two hours and I just can't go on. It feels like I weigh about twice what I do, and that most of that weight is dead weight which I am dragging around. I cannot walk at all. I have not even brushed my teeth or had a bath. The animals have yesterdays water.
(Oscar came home from boarding with diarrhea and I am trying to watch him carefully while I'm awake but, how can I monitor a dog if I cannot even keep myself fed?)
So, I am just gonna do what my body is screaming for, go back to bed. Somehow, even sitting upright and typing is sucking the very life out of me. This is, excuse me, shitty.
Making sure I have a grateful heart, I thank God that I have a warm, safe, happy, comfortable home to keep my bed in and that there are not other demands in my life which absolutely require my attention. Hope I get a bath sometime today.
Have lovely days, on my behalf, too!
Yes, I took a long road trip on the weekend. Yes, it did wear me out. Yes, I did take care of myself, taking naps, getting proper food, not overexposing myself, etc.
Yesterday, I was only able to be out of my bed for 4 hours out of 24. Today I have been up trying to do chores for two hours and I just can't go on. It feels like I weigh about twice what I do, and that most of that weight is dead weight which I am dragging around. I cannot walk at all. I have not even brushed my teeth or had a bath. The animals have yesterdays water.
(Oscar came home from boarding with diarrhea and I am trying to watch him carefully while I'm awake but, how can I monitor a dog if I cannot even keep myself fed?)
So, I am just gonna do what my body is screaming for, go back to bed. Somehow, even sitting upright and typing is sucking the very life out of me. This is, excuse me, shitty.
Making sure I have a grateful heart, I thank God that I have a warm, safe, happy, comfortable home to keep my bed in and that there are not other demands in my life which absolutely require my attention. Hope I get a bath sometime today.
Have lovely days, on my behalf, too!
Monday, September 29, 2014
Goodbye Grandma Hilda
It was a sweet funeral. Not bittersweet, just sweet. The bitter was the last few months witnessing her making herself ready. A century is a long time.
There were twelve Catholic priests (one of them her own son) and a bishop celebrating her Mass. That is quite a sight to behold, especially in a smallish church.
Since I sat in the aisle in my wheelchair, I sat closer to her than anyone else. At one point I reached out and touched the vestment that covered her coffin. Just saying my final goodbye. Taking advantage of the fact that God put me so logistically close. I did have a migraine when Mass began and so for the Gospel part, I put my sleeping mask over my face, letting the darkness help the medicine work, remembering that it was none of my business what anybody else thought. During the Eucharist, I watched through 2 pairs of sunglasses. It is the first Eucharist I have witnessed and received for at least 4 years, maybe more. Very special to me. Usually, I give in to the utter discomfort of it but, of course, I would not allow that to be an option during this service. I didn't cry much, some nose running. But, singing is such a personal, special thing to me that I could not join in song because that's when tears would really come. I had to be quiet.
The Rosary for her the previous evening was quite special too. I'm sure I have been to others for loved ones but, I don't recall them. My parents, my cousins, my aunts and uncles were active participants in both these services, and I wished I could be. But, I was there. And that was enough. In fact, that was a lot. I think most everyone now knows my Tim to be the superhero he is for his part in driving me 8 hours to her home in rural Nebraska. I'm glad for that. I want him to be appreciated by my loved ones. He does more for me than I can possibly describe in the mere English language. He lets me have my own life, and yet, he never inflicts guilt or disappointment when my condition disallows something he hoped for in his own life.
My uncle, Fr. Mel, celebrated a family Mass in one of the hotel rooms and I read the second reading. My folks told me how great I did. I thought, all I did was read aloud a piece of Scripture. Maybe they have never heard me do that before. I can read with quite a lot of inflection, which makes listening more interesting. And I got to thank the Lord for her foundation of faith, which allows the layers of faith to grow so strong, that now, I can bear this cross. Some who are affected as I am cannot bear the burden. Suicides happen. But, I was given a gift she shared with her children, which was then shared with me. Faith.
I am so full of gratitude that I got to see my beloved, treasured aunts and uncles, cousins, parents, brother, and meet some of the many many folks my Grandma's life affected. It was a very sweet time. The weather was lovely and my symptoms were not severe. I took naps and medicine while others visited. It allowed me to be part of things in the way that I could.
It will be some days before either Tim or I feel recovered from such a long drive. We are not accustomed to that. It is priceless to be home.
There were twelve Catholic priests (one of them her own son) and a bishop celebrating her Mass. That is quite a sight to behold, especially in a smallish church.
Since I sat in the aisle in my wheelchair, I sat closer to her than anyone else. At one point I reached out and touched the vestment that covered her coffin. Just saying my final goodbye. Taking advantage of the fact that God put me so logistically close. I did have a migraine when Mass began and so for the Gospel part, I put my sleeping mask over my face, letting the darkness help the medicine work, remembering that it was none of my business what anybody else thought. During the Eucharist, I watched through 2 pairs of sunglasses. It is the first Eucharist I have witnessed and received for at least 4 years, maybe more. Very special to me. Usually, I give in to the utter discomfort of it but, of course, I would not allow that to be an option during this service. I didn't cry much, some nose running. But, singing is such a personal, special thing to me that I could not join in song because that's when tears would really come. I had to be quiet.
The Rosary for her the previous evening was quite special too. I'm sure I have been to others for loved ones but, I don't recall them. My parents, my cousins, my aunts and uncles were active participants in both these services, and I wished I could be. But, I was there. And that was enough. In fact, that was a lot. I think most everyone now knows my Tim to be the superhero he is for his part in driving me 8 hours to her home in rural Nebraska. I'm glad for that. I want him to be appreciated by my loved ones. He does more for me than I can possibly describe in the mere English language. He lets me have my own life, and yet, he never inflicts guilt or disappointment when my condition disallows something he hoped for in his own life.
My uncle, Fr. Mel, celebrated a family Mass in one of the hotel rooms and I read the second reading. My folks told me how great I did. I thought, all I did was read aloud a piece of Scripture. Maybe they have never heard me do that before. I can read with quite a lot of inflection, which makes listening more interesting. And I got to thank the Lord for her foundation of faith, which allows the layers of faith to grow so strong, that now, I can bear this cross. Some who are affected as I am cannot bear the burden. Suicides happen. But, I was given a gift she shared with her children, which was then shared with me. Faith.
I am so full of gratitude that I got to see my beloved, treasured aunts and uncles, cousins, parents, brother, and meet some of the many many folks my Grandma's life affected. It was a very sweet time. The weather was lovely and my symptoms were not severe. I took naps and medicine while others visited. It allowed me to be part of things in the way that I could.
It will be some days before either Tim or I feel recovered from such a long drive. We are not accustomed to that. It is priceless to be home.
Wednesday, September 24, 2014
Short-lived good times
Well, for two whole days I felt what resembled decent, maybe even actually good, for me. Now, back to reality. I took the dog for two morning walks which I haven't done since the spring. During yesterday's walk, My legs got tired and painful and the back leg kept slamming into the front one, buckling the front knee and sending me almost down about five times. Thanks to my cane, I didn't fall but, that is the only reason. Good ole' Pokey. He's there when you need him.
I did some cooking yesterday and was happy with the results. Both recipes were new. But, toward the end of the morning, started feeling very ill. Like, I've got the flu, ill. So I ate some of my new food for lunch, took Valium and went to bed. After 2 hours, I got up feeling refreshed for about 30 seconds, and then ill all over again. Nauseated, dizzy, full hard body ache, headache, super fatigue, all of those things that make you think you've gotta be sick. But, I'm not sick. It's just my life. So, I spent the rest of the day on my couch, not even able to crochet. Just lying so heavily on my side that it felt like I was suddenly about 100 pounds heavier. I did take my temperature to be sure, but I knew I didn't have any fever. I was right. I don't know why these sudden "events" of symptoms still surprise me, but they do. I did think I was getting sick for a few hours until Tim came home and reminded me that everything I named were stuff I sometimes get during a flare.
The worst part is that I am not asleep. It is 2:52 am. I woke at about 1 and took the strongest pain med I have at my disposal, Hydrocodone. It doesn't knock me out but, does help with extreme pain enough for me to sleep. Not tonight. Still awake. So I've been listening to one of my murder mysteries. Finally, frustrated so, decided to get up and do something about it. This is the thing I'm doing. Writing to y'all.
I'm grateful I don't have insomnia more often. It is a killer for me. I know tomorrow will be much worse than today was because of it. That is not me "trying to predict the future". That is me knowing from my own historical data that sleepless nights trigger very severe reactions.
Gonna open my huge outline and work on my book for a bit. I'm so frustrated. Two good days is way better than none but, come on, two?? Really??
I did some cooking yesterday and was happy with the results. Both recipes were new. But, toward the end of the morning, started feeling very ill. Like, I've got the flu, ill. So I ate some of my new food for lunch, took Valium and went to bed. After 2 hours, I got up feeling refreshed for about 30 seconds, and then ill all over again. Nauseated, dizzy, full hard body ache, headache, super fatigue, all of those things that make you think you've gotta be sick. But, I'm not sick. It's just my life. So, I spent the rest of the day on my couch, not even able to crochet. Just lying so heavily on my side that it felt like I was suddenly about 100 pounds heavier. I did take my temperature to be sure, but I knew I didn't have any fever. I was right. I don't know why these sudden "events" of symptoms still surprise me, but they do. I did think I was getting sick for a few hours until Tim came home and reminded me that everything I named were stuff I sometimes get during a flare.
The worst part is that I am not asleep. It is 2:52 am. I woke at about 1 and took the strongest pain med I have at my disposal, Hydrocodone. It doesn't knock me out but, does help with extreme pain enough for me to sleep. Not tonight. Still awake. So I've been listening to one of my murder mysteries. Finally, frustrated so, decided to get up and do something about it. This is the thing I'm doing. Writing to y'all.
I'm grateful I don't have insomnia more often. It is a killer for me. I know tomorrow will be much worse than today was because of it. That is not me "trying to predict the future". That is me knowing from my own historical data that sleepless nights trigger very severe reactions.
Gonna open my huge outline and work on my book for a bit. I'm so frustrated. Two good days is way better than none but, come on, two?? Really??
Monday, September 22, 2014
Just a simple walk
I am home from walking the dog. A good medium sized walk. It's 6:42 am and normally, and frankly ideally, I'm sleeping at this time. But before I complain about having risen too early, let me just say how delighted I am to have been able to walk with him. I have taken small walks with him but, this was 45 minutes. I can't remember when I was last able to do that. Maybe April? Many, many months. So grateful that the summer is behind us for the year. Pain is worse in cold weather, but somehow, and I know this hardly makes sense, I can function better than I can when its hot. The heat deflates me. It unbuttons me and I feel as if I am falling apart. But, the cool and cold weather, I feel buttoned up and more capable. Yes, it is more painful but, I can do some things. I am not trapped in my air-conditioned walls. I have such a lovely home. I never want it to feel like a prison. It isn't one, I just impose that feeling on it sometimes. I crave outdoors. Another loss. Another thing I miss. Just being able to go find a tree to sit under and read at any time. In any temperature.
O is happy for the walk too. It is hard to be unhappy when there's a happy dog shadowing me.
Have happy days,
Marie
O is happy for the walk too. It is hard to be unhappy when there's a happy dog shadowing me.
Have happy days,
Marie
Sunday, September 21, 2014
Wow, a lot has happened to me
So, I have jumped in the deep end of this "writing a book" pool. I did at least begin with an outline, nod to Mrs. Huenke at CCC, but, it is eleven pages long. Wondering if I might have challenges with this when I get to the editing part. LOL.
I have decided my strategy is to write the book as if I am writing it to my friend, and old friend, newly diagnosed. That stage of it for me was the one in which I would have welcomed a book like this. So, without naming any names, (I don't even know if she reads my blog) I'm gonna write this to you, yes you. Some of it may sound harsh, rude, blunt, but, I promise all of it will be the truth. The truth from my eyes and ears. My truth.
It is energizing to have this project committed to and I woke up this morning and couldn't wait to get to my brainstorming outline. I want to make sure I have really rolled around in it for a bit before I start making sentences. I fear when I start, I might not stand up again or eat anything for 5 or 6 days. Well maybe one day. And even if I did that for one day, that is a no-no for me. Moderation. Balance. That is the land I live in. Mantra. Come on y'all. "Moderation, Balance, Moderation, Balance......" It's like the scene in the movie Hitch where Will Smith is teaching Kevin____ how to dance. He says "you live right here. I don't ever want to see you doing that crazy stuff again."
Have a happy evening!
Marie
I have decided my strategy is to write the book as if I am writing it to my friend, and old friend, newly diagnosed. That stage of it for me was the one in which I would have welcomed a book like this. So, without naming any names, (I don't even know if she reads my blog) I'm gonna write this to you, yes you. Some of it may sound harsh, rude, blunt, but, I promise all of it will be the truth. The truth from my eyes and ears. My truth.
It is energizing to have this project committed to and I woke up this morning and couldn't wait to get to my brainstorming outline. I want to make sure I have really rolled around in it for a bit before I start making sentences. I fear when I start, I might not stand up again or eat anything for 5 or 6 days. Well maybe one day. And even if I did that for one day, that is a no-no for me. Moderation. Balance. That is the land I live in. Mantra. Come on y'all. "Moderation, Balance, Moderation, Balance......" It's like the scene in the movie Hitch where Will Smith is teaching Kevin____ how to dance. He says "you live right here. I don't ever want to see you doing that crazy stuff again."
Have a happy evening!
Marie
Saturday, September 20, 2014
Today is the beginning
Today, I got a new super-angel. Today, the power of the heavenly hosts rooting for me down on this planet increased by one. By many more than one, I'm sure. But my one, my treasured one, counts for way more than a single angel. Upon hearing she went to the Lord in her sleep I could not stop the smiling and the tears of joy that she has gone home. I feel nothing but blessed to have had her in my life.
I saw a video that a lil' 6- yr old made on FB about the meaning of life. After watching the 4 minutes of her simplicity, I decided. It actually felt like the decision was visceral, that it got made for me, without me, even. I have thought about writing a book about myself and my experiences. I have been encouraged to do so by loved ones and by strangers. But, I have not really thought that I could. Never really thought I was "great" in that way. Now, I believe I am. The belief in it is tangible, like I could put it in my pocket and carry it around with me.
I made the public commitment on FB just now as accountability and I want to do so here, as well. There will be an autobiography on Marie. I do not have any time related goal. As I sat down with the laptop in the living room so Oscar can lie on my feet, I turned on TV because I like background noise sometimes. Love, Actually is on. That seals the deal. This is God and His whole universe telling me that I have moved toward my calling. It is the thing that I have been afraid would be laughed at. I have even laughed at myself for just thinking the notion that anybody would want to read about me. Well, no more laughing. I will become great. Within my limitations and amid whatever pain comes my way, I will do this and it will not be laughed at by anyone who loves me. And really, who else in the world matters? Not a single solitary one of 'em.
Have happy, happy days,
Marie
I saw a video that a lil' 6- yr old made on FB about the meaning of life. After watching the 4 minutes of her simplicity, I decided. It actually felt like the decision was visceral, that it got made for me, without me, even. I have thought about writing a book about myself and my experiences. I have been encouraged to do so by loved ones and by strangers. But, I have not really thought that I could. Never really thought I was "great" in that way. Now, I believe I am. The belief in it is tangible, like I could put it in my pocket and carry it around with me.
I made the public commitment on FB just now as accountability and I want to do so here, as well. There will be an autobiography on Marie. I do not have any time related goal. As I sat down with the laptop in the living room so Oscar can lie on my feet, I turned on TV because I like background noise sometimes. Love, Actually is on. That seals the deal. This is God and His whole universe telling me that I have moved toward my calling. It is the thing that I have been afraid would be laughed at. I have even laughed at myself for just thinking the notion that anybody would want to read about me. Well, no more laughing. I will become great. Within my limitations and amid whatever pain comes my way, I will do this and it will not be laughed at by anyone who loves me. And really, who else in the world matters? Not a single solitary one of 'em.
Have happy, happy days,
Marie
Tuesday, September 16, 2014
Awesome doesn't begin to describe
First, good news. I figured out why I was waking up screaming. The dose of melatonin was too much for me. I stopped taking it and haven't had an incident since. Just a side effect. No need to see Dr. L.
We have been home from our vacation for about two days. I am in severe pain. Symptoms of every kind are extreme right now. Large combo package of reasons, not the least of which is just exhaustion and jet lag. Last night I slept from midnight to noon. Tonight, took an evil melatonin just now at 7:30 to try to help me reestablish a normal sleep time.
I can't wait to share the stories of my ginormous adventure. I honestly did not think I'd be able to ever enjoy my life in the way I did last week since I first got sick. I thought that kind of delight was just out of reach for me. I was wrong. Blessedly, blessedly wrong.
I took many pics and movies. I rediscovered my sweetheart's fierce love for me and defense of me to any predator. I beheld some of the Lord's creation which left me speechless and teary eyed.
I did write "journal entries" two days and will share those as is. But, the rest will have to wait until I can start to spare spoons for the telling. My speech is just sort of gone right now. I want so badly to call my folks and share with them the stories of my fabulous time but, my body won't cooperate at this point.
I have a happy life. I am a blessed woman. I hope some spark of light the Lord gave me shines on others I meet. Tim suggested, and discussed at length, the fact that he thinks that I really should write a book, and not just this blog, about my experience with life and this condition. Share all I have learned. Others have suggested it before but, he now would really like to see me do it. It seems like a daunting task but, so does that pile of dirty dishes when I hurt this bad. :/
Have some household help coming tomorrow.
Happy, happy days!
Marie
We have been home from our vacation for about two days. I am in severe pain. Symptoms of every kind are extreme right now. Large combo package of reasons, not the least of which is just exhaustion and jet lag. Last night I slept from midnight to noon. Tonight, took an evil melatonin just now at 7:30 to try to help me reestablish a normal sleep time.
I can't wait to share the stories of my ginormous adventure. I honestly did not think I'd be able to ever enjoy my life in the way I did last week since I first got sick. I thought that kind of delight was just out of reach for me. I was wrong. Blessedly, blessedly wrong.
I took many pics and movies. I rediscovered my sweetheart's fierce love for me and defense of me to any predator. I beheld some of the Lord's creation which left me speechless and teary eyed.
I did write "journal entries" two days and will share those as is. But, the rest will have to wait until I can start to spare spoons for the telling. My speech is just sort of gone right now. I want so badly to call my folks and share with them the stories of my fabulous time but, my body won't cooperate at this point.
I have a happy life. I am a blessed woman. I hope some spark of light the Lord gave me shines on others I meet. Tim suggested, and discussed at length, the fact that he thinks that I really should write a book, and not just this blog, about my experience with life and this condition. Share all I have learned. Others have suggested it before but, he now would really like to see me do it. It seems like a daunting task but, so does that pile of dirty dishes when I hurt this bad. :/
Have some household help coming tomorrow.
Happy, happy days!
Marie
Monday, September 1, 2014
A bit of pre-vacation anxiety
This is due to a repeated nightmare. I have had it 3 more times since I wrote Love and Twitches on 8/20/14. I keep waking up screaming. REALLY screaming, loud enough to bring Tim to me from across the house. Here is what is happening: I am dreaming something innocuous. I never remember what but, it is never a dream where there is any danger. Then suddenly, I am seeing black and receive two blunt hard hits to my head. It is painful, but more the jolt and the surprise take me back. And, I'm highly aware that it is not related to the previous dream so, the only other option is that it is really happening to my head and I wake up screaming.
On our upcoming vacation, we will be in a mini-suite of our own but, ships probably don't have super thick walls, so I imagine if this happens, I will definitely wake others. I guess it can't be helped.
The really sad part is that I used to look so forward to my sleep. Now, I am growing anxious about it. It is a horrifying way to wake up. I much prefer the dreams where I am killed in my sleep by my family member. This sudden, out of nowhere attack to my head when I am at my most vulnerable, it is terrifying. It has not happened during nap time, thankfully, only between 2 and 5 am.
I need to see Dr. L about it. I'm booking an appt for when we come home.
Have happy happy days!
On our upcoming vacation, we will be in a mini-suite of our own but, ships probably don't have super thick walls, so I imagine if this happens, I will definitely wake others. I guess it can't be helped.
The really sad part is that I used to look so forward to my sleep. Now, I am growing anxious about it. It is a horrifying way to wake up. I much prefer the dreams where I am killed in my sleep by my family member. This sudden, out of nowhere attack to my head when I am at my most vulnerable, it is terrifying. It has not happened during nap time, thankfully, only between 2 and 5 am.
I need to see Dr. L about it. I'm booking an appt for when we come home.
Have happy happy days!
Friday, August 29, 2014
Today, the border of darkness
I have an overwhelming feeling of apathy today. I don't like that. I have felt it before and I know which road that sometimes leads me down. A dark road. A road that convinces my subconscious to bully me into accepting blame and undoes any belief I have in myself. The really troubling thing is that on that depressing road, there are just a few ways off of it. We all know there is obviously a permanent solution to that depressing road. I am not interested at all in a permanent solution because I KNOW my problem is temporary. The other ways off the road are medications, which I already take, and cognitive therapy, which I already engage in. I would not call my mood today depressed, but, it is on the border, closer to depressed than not, and I am uncomfortable with it because, I am already being treated for it. This could mean maybe my medicine needs to be adjusted. Maybe I need to increase the frequency of my psychologist visits. Or maybe it is just due to hormones, in which case, I may feel better in a few days. I wish I could know.
I face so many unknowns. I realize everyone does but, I face them from an angle of the underdog, as it were. I don't have independence. I don't always have benefit of my own mind, my own brain. I don't have control over when I will be overtaken by symptoms so severe that they steal my speech from me. I have no idea when or where this will happen. I have tried over the nine and a half years to figure out when and why and where but, I just end up frustrated. I do control what I can. I understand some of the stimuli in our world which are triggers for me. But, I have internal chemical triggers too, which I cannot control or predict. Also, there is just the weather.
I envy folks who feel capable. I remember that feeling and looking back, it really is complete freedom. Like taking flight. You can do for yourself whatever you need. You can also do for others so as to fuel relationships which are sustainable. I would never have thought that at just 45, I am not capable anymore. Rather, I'm not as capable as I was, or as I'd like to be, or as capable as most other 45 year old women. Yes, I am more capable than some but today, I want to allow myself to focus on what I have lost. I think I don't do that enough. I force myself to look to the optimistic angle, knowing things could always be worse for me. But, I also need to acknowledge the reality of who I am now. I need to recognize and honor what is lost. How profound the loss is, and, for all anybody knows, how permanent. I am quite young to have lost so much. The loss took place when I was 36. That is not very much of capable adulthood. Not enough.
I envy folks who can look forward in their lives. They have events which will happen that will be milestones. I do not. I will not retire. I will not watch a child go to college. I will not watch a son or daughter get married. I will not hold a grandchild. And these cannot be hoped for. They are given facts. I hope instead for things and environments for those I love dearly, not for myself. I hope my siblings can all retire, happily, at an appropriate age, and with health. I hope my nieces and nephew find love, real respectful, life-changing love. I hope my spouse has a fulfilled life. (This nags at me today since I am feeling downish. I know by the fact of being married to me, his life is limited, too. He professes that he is happy and content and I believe he is. But, I cannot help but wonder what kind of man he would be with an able wife.) I hope my parents keep their health and their minds for as long as God wants them with us. I hope no one I love comes down with a catastrophic disease. I wish I could say that I hope for a cure for my illness but, in truth, that is too terrifying to do. It opens my heart too wide and I just cannot bear it. I think I have had just one too many heartbreaks than to wish for that. What I do hope for, for myself, is never to become seriously depressed again.
So, it is clear why I am a bit bothered today. This is the opposite of what I would like to feel. I don't really feel sad or angry, I just feel, well nothing. Many days, I'm so full of gratitude, love, joy, delight, that to have a day where I feel none of those and in fact cannot make myself smile, that is a marked mood change. I will take steps today to really measure and observe how I am emotionally and I will try to truly understand what is going on. Maybe I really am just lonely. I have told Tim several times this week in the evenings or afternoons how glad I was that he was home from work. Loneliness is a killer. I can be alone. I can do that with the best of them. But I, like everybody else, am a social animal. I crave contact with others. And I don't have enough. I live with a constant deficit. Maybe the deficit is continually there because of how much I limit myself and my exposure to potential triggers of horrible physical symptoms, maybe not. Maybe it is just really hard to be on the other side of a meaningful friendship with me. I don't know. I can't stand in those shoes, though I wish I could, just so I could understand.
I feel like I'm an old person, reflecting on the times in my life when I was vital and capable. Just 15 years over the age of 21. So those few years are all I dream about at night, those specific environments. All I have to remember. That is not to say that I haven't done anything meaningful since the onset of this illness, I have, and I'm proud. But, it would be a lie to say I don't feel forgotten. Almost what I imagine it would be like to be in a nursing home, just sort of left behind, while the rest of the capable world gets on with what they are looking forward to.
I want to snap out of this apathy and so I pray that I will. Lord, please let Your Holy Spirit fill me and comfort me. Help me look toward you when I crave looking toward some earthly situation. Help me feel fulfilled in knowing how precisely special you created me. Help me know I am fulfilling a purpose unknown to me but critical in Your plan. Help me to smile again. Amen.
I face so many unknowns. I realize everyone does but, I face them from an angle of the underdog, as it were. I don't have independence. I don't always have benefit of my own mind, my own brain. I don't have control over when I will be overtaken by symptoms so severe that they steal my speech from me. I have no idea when or where this will happen. I have tried over the nine and a half years to figure out when and why and where but, I just end up frustrated. I do control what I can. I understand some of the stimuli in our world which are triggers for me. But, I have internal chemical triggers too, which I cannot control or predict. Also, there is just the weather.
I envy folks who feel capable. I remember that feeling and looking back, it really is complete freedom. Like taking flight. You can do for yourself whatever you need. You can also do for others so as to fuel relationships which are sustainable. I would never have thought that at just 45, I am not capable anymore. Rather, I'm not as capable as I was, or as I'd like to be, or as capable as most other 45 year old women. Yes, I am more capable than some but today, I want to allow myself to focus on what I have lost. I think I don't do that enough. I force myself to look to the optimistic angle, knowing things could always be worse for me. But, I also need to acknowledge the reality of who I am now. I need to recognize and honor what is lost. How profound the loss is, and, for all anybody knows, how permanent. I am quite young to have lost so much. The loss took place when I was 36. That is not very much of capable adulthood. Not enough.
I envy folks who can look forward in their lives. They have events which will happen that will be milestones. I do not. I will not retire. I will not watch a child go to college. I will not watch a son or daughter get married. I will not hold a grandchild. And these cannot be hoped for. They are given facts. I hope instead for things and environments for those I love dearly, not for myself. I hope my siblings can all retire, happily, at an appropriate age, and with health. I hope my nieces and nephew find love, real respectful, life-changing love. I hope my spouse has a fulfilled life. (This nags at me today since I am feeling downish. I know by the fact of being married to me, his life is limited, too. He professes that he is happy and content and I believe he is. But, I cannot help but wonder what kind of man he would be with an able wife.) I hope my parents keep their health and their minds for as long as God wants them with us. I hope no one I love comes down with a catastrophic disease. I wish I could say that I hope for a cure for my illness but, in truth, that is too terrifying to do. It opens my heart too wide and I just cannot bear it. I think I have had just one too many heartbreaks than to wish for that. What I do hope for, for myself, is never to become seriously depressed again.
So, it is clear why I am a bit bothered today. This is the opposite of what I would like to feel. I don't really feel sad or angry, I just feel, well nothing. Many days, I'm so full of gratitude, love, joy, delight, that to have a day where I feel none of those and in fact cannot make myself smile, that is a marked mood change. I will take steps today to really measure and observe how I am emotionally and I will try to truly understand what is going on. Maybe I really am just lonely. I have told Tim several times this week in the evenings or afternoons how glad I was that he was home from work. Loneliness is a killer. I can be alone. I can do that with the best of them. But I, like everybody else, am a social animal. I crave contact with others. And I don't have enough. I live with a constant deficit. Maybe the deficit is continually there because of how much I limit myself and my exposure to potential triggers of horrible physical symptoms, maybe not. Maybe it is just really hard to be on the other side of a meaningful friendship with me. I don't know. I can't stand in those shoes, though I wish I could, just so I could understand.
I feel like I'm an old person, reflecting on the times in my life when I was vital and capable. Just 15 years over the age of 21. So those few years are all I dream about at night, those specific environments. All I have to remember. That is not to say that I haven't done anything meaningful since the onset of this illness, I have, and I'm proud. But, it would be a lie to say I don't feel forgotten. Almost what I imagine it would be like to be in a nursing home, just sort of left behind, while the rest of the capable world gets on with what they are looking forward to.
I want to snap out of this apathy and so I pray that I will. Lord, please let Your Holy Spirit fill me and comfort me. Help me look toward you when I crave looking toward some earthly situation. Help me feel fulfilled in knowing how precisely special you created me. Help me know I am fulfilling a purpose unknown to me but critical in Your plan. Help me to smile again. Amen.
Sunday, August 24, 2014
Thanks Mike!
I giant THANK YOU VERY MUCH to my admirable and considerate brother Mike who challenged those who know me to donate to fibromyalgia research. The good solid cry elicited by reading your words in support of us fibromites was needed and now I am left feeling more peaceful. I had whined previously in the week on facebook about how, being grateful that I don't have something worse, God forbid ALS, I do hope that someday there will be an ice bucket or some challenge for us. I was jealous. We need research too. And Mike answered the call, the prayer. Bring awareness. Tell people. This disease is apples and oranges from ALS and yet, the Marie I was in 2005, is dead. I have grieved her loss and I do still. The new Marie lives, copes, adapts but, this illness shut down much of what was my identity. And I do not exaggerate when I say that I cannot imagine that it will never go away. I can't think that way. The depression involved is debilitating. I don't think much past the next few weeks. I don't plan much. I don't hope for much. I do have a great handful of medical professionals guiding me through life, and I am blessed with a small but solid support system. I am blessed in so many ways but, I also have awoken in the morning, and been sorry that I did. Facing pain is hard. Really hard.
I am looking forward now to the first big vacation since my onset in 2005. We always just go to families homes and spend time with loved ones or staycations. I have been fearful about how I would fare in different situations, different sleeping arrangements, different diet, temperatures, etc. But, now, finally, 9 years in I am no longer afraid. It is true that the cruise is a giant unknown but, I choose to have curiosity instead of worry. I don't know for sure that I won't be able to constantly feel the boat engine. I mean, I can feel the electricity inside the wall next to me so, you'd think a ginormous engine may bother me. I don't know for sure that I will adapt in a timely enough manner to the temperature of the Pacific northwest and the Alaska coast that I will be able to enjoy the environment. I don't know that all the other ladies on the ship might not be bathed in migraine-triggering perfumes when it is dinner time. I just don't know. But, I have made the decision not to be afraid anymore. We have never been on a cruise, and frankly neither of us ever imagined needing a passport but, in a couple weeks, we will be off. And I am so excited. Not worried, just wondering how I will problem solve. So when I wrote above that I don't plan much, this cruise, planned 6 months before, is new. It is a risk. It involves some hope. Some faith.
http://www.fmnetnews.com/ to learn
http://www.afsafund.org/ to donate
I am looking forward now to the first big vacation since my onset in 2005. We always just go to families homes and spend time with loved ones or staycations. I have been fearful about how I would fare in different situations, different sleeping arrangements, different diet, temperatures, etc. But, now, finally, 9 years in I am no longer afraid. It is true that the cruise is a giant unknown but, I choose to have curiosity instead of worry. I don't know for sure that I won't be able to constantly feel the boat engine. I mean, I can feel the electricity inside the wall next to me so, you'd think a ginormous engine may bother me. I don't know for sure that I will adapt in a timely enough manner to the temperature of the Pacific northwest and the Alaska coast that I will be able to enjoy the environment. I don't know that all the other ladies on the ship might not be bathed in migraine-triggering perfumes when it is dinner time. I just don't know. But, I have made the decision not to be afraid anymore. We have never been on a cruise, and frankly neither of us ever imagined needing a passport but, in a couple weeks, we will be off. And I am so excited. Not worried, just wondering how I will problem solve. So when I wrote above that I don't plan much, this cruise, planned 6 months before, is new. It is a risk. It involves some hope. Some faith.
http://www.fmnetnews.com/ to learn
http://www.afsafund.org/ to donate
Wednesday, August 20, 2014
Love and twitches
It's 4:48 am. I woke at almost exactly 3:30 screaming. This has only happened a handful of times in my life and only two or three times since I've lived with Tim. He came to me from his room, 4 rooms away, to see that I was OK. Then he climbed into bed with me and held me and chatted with me about whatever TV we watched last night or how much we got the cat to eat or whatever for about 10 minutes. I apologized for waking him and he said he was already awake but, I'm not so sure. With a long body pillow in between us, he held me. I have to sleep naked, I require it. I cannot bear to have anything touching my skin except socks and mittens/gloves. In addition, I cannot bear to be touched by him, or have his skin next to mine while I am trying to sleep. It just doesn't work. I am too sensitive to the stimulation that my body and brain cannot relax. He gets this. So, for about 5 minutes or so we just lay there together, him holding me, me feeling blessed that my husband would come to my "rescue", knowing that I am loved and truly cared for. He gets up at 4 am to start his day, so for the last 10 minutes or so, he was sort of dozing off, snoozing a bit. This is when the real trouble starts for me. My sensitive brain goes into hyper drive. Even light snuffles sound like the loudest snores, and the twitches, don't get me started. As he falls asleep, probably as do many thousands of normal functioning bodies, he twitches during that light phase before he gets to deep sleep. And it makes me crazy. CRAZY crazy. I simply cannot tolerate it. But, I knew his internal clock would get him up and into the bath at 4 am and that for 10 minutes I would make myself tolerate it. I would lie next to this man who rescued me and subdue all my reflexive reactions to get away from the stimulation and just be grateful. Grateful for the twitches because, should I outlive him, I will surely never feel them again. Grateful that someone in this world so loves me as to rush to my aid across the entire house in the middle of the night. It was a long 10 minutes of gratitude but, I endured. Mind over matter works but it has limits. After all, it was only 10 minutes, and I would not have asked him to leave, I would have just put on a robe and wandered out to the couch or something. But, after he kissed me goodbye for the day and left at 4am, I was suddenly so aware of how alone I spend my nights. I so miss not being able to share a bed with him. Not being able to snuggle. We are naturally limited in our intimacy as any couple is when one has a chronic illness. But, we have learned to adapt and cope creatively with that as best we can. It is just the day to day intimacy of how lovely it would be to wake up with him that I don't have. The fact that I cannot lie in his arms comfortably, naked, for more than like 15 seconds, is a loss. I would not even hear him if he had such a nightmare and called out in the night. I have to have this white noise machine 2 feet from my head on loud to block out any and all extraneous sounds or a simple car passing would wake me. And so, I am aware again, from another angle, how our relationship is affected by this illness. In the spirit of trying to give thanks in all things, I am thankful that the roles are not reversed because he so loves how the cat curls up to sleep with him, while I cannot have it. I am thankful he gets that affection and that he deeply understands that my hypersensitivity is not my choice. It is my wiring. I have no more control over it than I do which hormones will be released when. I can endure discomfort for a short while, as I proved this morning but, after doing so, I am wide awake, and my very precious sleep is cut short by a few hours. This will prove to be problematic later today. I have a doctors appointment this morning which means waiting for and riding the bus to and from. Also, being in crowded noisy waiting rooms, and lots of fluorescent lighting. And finally, when I get home, it will be lunchtime and immediately nap time. By the time I wake, he will be home from work. Hopefully, and this is really hoping, my nap will be restorative enough that I can enjoy at least a few hours awake with him before I have to turn in for the night. Just love and twitches. Such is life. Reminds me to pray the Serenity prayer.
Have happy days!
Have happy days!
Thursday, August 14, 2014
So glad for wheels
Well, the good news is abundant. I was able to take a short walk with Oscar on 8/12 and again today. Got home not feeling completely spent. Did the kitchen chores I like to have done for the day. Got my bath in. Feel quite dizzy now, and thankfully, there is a chair here with wheels in which to convey my pretty self around so I do not fall. I am unusually dizzy. Not alarmed yet but, just aware. Will eat something smallish and then go back to bed for my nap. And, Vlad seems to be happy, as well.
Have happy days!
It's later, after the nap. Vlad is awake and unsatisfied with his lot in life. I feel different today. Something is off. I am just as dizzy now as I was before nap time. Super grateful for my wheelchair and the knowledge that I probably won't get hurt. Something is different.
Have happy days!
It's later, after the nap. Vlad is awake and unsatisfied with his lot in life. I feel different today. Something is off. I am just as dizzy now as I was before nap time. Super grateful for my wheelchair and the knowledge that I probably won't get hurt. Something is different.
Sunday, August 10, 2014
Vlad my pet migraine
Many folks have never had a migraine headache. Some folks have only had a couple in their lives. For me, I have a pet migraine which I would like to fully describe and introduce y'all to. His name is Vlad. I once saw a show on the history channel about Vlad the Impaler in some Slavic nation who used to put the heads of his own people on spikes around his castle. That feels like about the right amount of evil I wish his name connotation to have.
So, Vlad chose me. I did not pick him. With my dog, I went to the place where the dogs were and then my specific dog did come and sit on my foot and claim me as his. And the cat, we chose her specifically. Vlad wandered into my life one day with a ball and chain and I could simply not outrun him. This description of him will sound fantastical but, I assure you it is as real a description as I can write about the facts and how they unfold. In my imagination, if I had to draw Vlad, he'd be like a Gila monster. Now some think those are cool or cute but, Vlad is mutated. He is a color that makes you gag. Whatever that color is for you. For me, its a yellowish brownish greenish hue. His skin looks like a cross between a decomposing fish and a cat with mange. It is a disturbing sight. And he varies in size, unlike any other organism I've ever seen. There are times when he's probably only 10 pounds, other times when he's easily 200 lbs. And times when he's weightless.
Here is a description of our day. He is clamped to me permanently. We both know this. It is my job to keep him satisfied. When Vlad is happy, everyone is happy. He lives in an invisible backpack I wear at all times and he is weightless when he is happy. As he feels dissatisfaction, he grows weight and bulk. Sometimes this happens slowly, but, I have known it to happen in under 2 minutes as well.
Many varied things could upset his zen. Too much light, too much noise, too much hunger or thirst, too much of some food additive, too many hours of being awake, weird strong smells, some random color blue, whatever. Some of it is predictable, some is just not. I have studied the species Vlad belongs to and I try very hard to please him. I really do. I wear sunglasses inside my home about half my waking hours. I keep the temperature at 70 degrees and pay the electricity to do that. He will not tolerate even 72 without letting me know his displeasure. I do not emerge from the doors of my home without a large brim hat on my head. No matter the season. This sometimes makes me look like a freak, I know, or a homeless woman, but, really at the cost of keeping Vlad happy, I will pay a very hefty fine.
So, here is how it unfolds when Vlad becomes dissatisfied. Let's say, I am 30 minutes past due for something new in my belly. Vlad becomes visible and he's maybe the size of a beagle. (Rarely ever does he reveal himself in smaller more manageable forms, like say, lizard-sized. It has happened but it is the exception, not the rule. Vlad is a diva, all about drama.) Big enough for me to do something about IMMEDIATELY. This action involves several things. First, I reach for my migraine medicine. I take Frova which is a triptan and is what is called an acute medicine, meant to stop Vlad from growing further. (I also take other preventative medicine daily to keep Vlad satisfied. He's a propanolol junkie. My blood apparently is more appealing when its thinner.) I take one 2.5 mg Frova with 2 Aleve, and I have these 3 pills on my person at all times, unless I have had to leave my house in such a terrible brain fog that I have not replaced my supply. This is a disaster. Vlad wins. More about that later.
So I've taken the pills, Vlad has gotten from a beagle sized Gila monster to a pony sized Gila monster in a matter of about 20 minutes OR, the medicine has indeed aborted the migraine and Vlad is chased back into his invisible backpack. Even if the latter happens, I still wear my sunglasses for a while just to make sure Vlad is OK if he sticks his head back out. Let's talk about when the acute medicine fails. This happens more often than it used to for me, and also, I am very aware of what's called rebound headaches. If you take the acute medicine so often, you begin to have a headache only because you haven't taken it that day. I have gotten into this cycle before and the only way out is to suffer some days of Vladzilla. Not something I am ever wanting to face again. So, I am careful about my medicine and try to not take it more than 3 days in a row. Also, the insurance company only gives me 9 pills for my month supply. That is an awful high expectation that I can keep Vlad satisfied, if you ask me. But I digress.
It's about 40 minutes after I took the meds and the pony sized Vlad is now cow-sized. He requires darkness, stillness, and quiet. When I say requires, I mean that. This is not what Vlad prefers, he is now big enough that he is holding my entire body hostage unless he gets these three needs met. If ignored, he will make me vomit any food or water or medicine I've taken, and I have come close to passing out from not providing them. Strength of every kind leaves me. Knees buckle. Speech goes. The whole she-bang hits the fan.
So, now, I am providing Vlad his needs. I am alone in my dark bedroom lying still with the ball of my hand pressing my third eye. This seems to be an iota of relief. Not sure why but, it is. I sometimes lie with cold towels or wet cloths over my face or around my neck. Mostly I just pray for passing out so I am not any longer awake for the suffering. Vlad is now the size of that really big bear they have stuffed at the Cabela's store. Maybe 15 feet tall or more. But, don't imagine him as beautiful like the bear, he's still the Gila monster mutation with mange and dead scales. It is a sight to behold, let me tell you. And, now he is snacking on my skull and my brain. Yes. He Is. Eating it and not in bear sized bites. In dainty little tea-time sized bites. Eating my brain. While I am alive. I pray to the Virgin Mary to just sleep. Please let me sleep. Most times, I wake up and Vlad has gone back to his backpack and life is again wonderful. Sometimes, Vlad is still with me, but beagle sized again. Or maybe even mouse-sized, but, he's out of his sanctuary which means my battle is already begun. Since it's not a good idea to take more acute meds at this point, there's nothing for it but stay in darkness, coolness, stillness, quiet to keep him from growing. He's already unhappy. He's gonna grow. This is not conjecture. This is historical data. The headache always progresses without medication in my body. But, I do still need to come out of my bedroom cave now and then to do stuff like feed myself and my animals when I'm alone here. The dog still has got to go out. So, life is not easy. Not at all.
Now imagine this. Vlad has been bear-sized for 2 days, no relief. This makes him grow exponentially. After 5 days Vlad becomes Vladzilla, and that is not a joke. I am so overwhelmed by the sheer pain I am constantly in that I think I lapse into incoherence sometimes. I can only bring myself to whisper, not even speak aloud. I do not want to eat. This has happened to me. This is not fiction.
If you've ever talked with me about my pain, I will have told you that I'd take physical body pain any and every day over the migraines. Now that you have met Vlad and know his true nature, and that he is tethered to me with a ball and chain thingy, you see, pain in my arms, hands, legs, back, it's all not so bad. Yes, it is disabling. No, I cannot drive. No, I cannot work. But, I do not want to die. When Vladzilla is on me, eating my frontal lobe, I do. I truly do want to die. I would never do anything to cause that to happen because it is not for me to make that decision but, I have wanted it. More than once. And, I think I probably will want it again. It is a natural human response to torture. That is what migraine is. Vlad the Torturer. And I am only a human.
There is a shot to be had at emergency rooms which sometimes is effective in disrupting these marathon migraines but, even they do not always work and sometimes have powerful side-effects. If your brain was being snacked on by a bear sized mutated Gila monster, now imagine vomiting until you dry heave. That is worse than just being snacked on. Yes? Yes. Trust me, it is.
Dear Lord, we pray for all the little Vlad's in creation that they make themselves known while they are manageable and do not drive people to madness. We pray especially for those we love never to suffer this kind of head pain. We pray for you to intervene when folks are thinking of permanently solving a temporary problem. In you gentle hands, Amen.
Have happy happy days!
So, Vlad chose me. I did not pick him. With my dog, I went to the place where the dogs were and then my specific dog did come and sit on my foot and claim me as his. And the cat, we chose her specifically. Vlad wandered into my life one day with a ball and chain and I could simply not outrun him. This description of him will sound fantastical but, I assure you it is as real a description as I can write about the facts and how they unfold. In my imagination, if I had to draw Vlad, he'd be like a Gila monster. Now some think those are cool or cute but, Vlad is mutated. He is a color that makes you gag. Whatever that color is for you. For me, its a yellowish brownish greenish hue. His skin looks like a cross between a decomposing fish and a cat with mange. It is a disturbing sight. And he varies in size, unlike any other organism I've ever seen. There are times when he's probably only 10 pounds, other times when he's easily 200 lbs. And times when he's weightless.
Here is a description of our day. He is clamped to me permanently. We both know this. It is my job to keep him satisfied. When Vlad is happy, everyone is happy. He lives in an invisible backpack I wear at all times and he is weightless when he is happy. As he feels dissatisfaction, he grows weight and bulk. Sometimes this happens slowly, but, I have known it to happen in under 2 minutes as well.
Many varied things could upset his zen. Too much light, too much noise, too much hunger or thirst, too much of some food additive, too many hours of being awake, weird strong smells, some random color blue, whatever. Some of it is predictable, some is just not. I have studied the species Vlad belongs to and I try very hard to please him. I really do. I wear sunglasses inside my home about half my waking hours. I keep the temperature at 70 degrees and pay the electricity to do that. He will not tolerate even 72 without letting me know his displeasure. I do not emerge from the doors of my home without a large brim hat on my head. No matter the season. This sometimes makes me look like a freak, I know, or a homeless woman, but, really at the cost of keeping Vlad happy, I will pay a very hefty fine.
So, here is how it unfolds when Vlad becomes dissatisfied. Let's say, I am 30 minutes past due for something new in my belly. Vlad becomes visible and he's maybe the size of a beagle. (Rarely ever does he reveal himself in smaller more manageable forms, like say, lizard-sized. It has happened but it is the exception, not the rule. Vlad is a diva, all about drama.) Big enough for me to do something about IMMEDIATELY. This action involves several things. First, I reach for my migraine medicine. I take Frova which is a triptan and is what is called an acute medicine, meant to stop Vlad from growing further. (I also take other preventative medicine daily to keep Vlad satisfied. He's a propanolol junkie. My blood apparently is more appealing when its thinner.) I take one 2.5 mg Frova with 2 Aleve, and I have these 3 pills on my person at all times, unless I have had to leave my house in such a terrible brain fog that I have not replaced my supply. This is a disaster. Vlad wins. More about that later.
So I've taken the pills, Vlad has gotten from a beagle sized Gila monster to a pony sized Gila monster in a matter of about 20 minutes OR, the medicine has indeed aborted the migraine and Vlad is chased back into his invisible backpack. Even if the latter happens, I still wear my sunglasses for a while just to make sure Vlad is OK if he sticks his head back out. Let's talk about when the acute medicine fails. This happens more often than it used to for me, and also, I am very aware of what's called rebound headaches. If you take the acute medicine so often, you begin to have a headache only because you haven't taken it that day. I have gotten into this cycle before and the only way out is to suffer some days of Vladzilla. Not something I am ever wanting to face again. So, I am careful about my medicine and try to not take it more than 3 days in a row. Also, the insurance company only gives me 9 pills for my month supply. That is an awful high expectation that I can keep Vlad satisfied, if you ask me. But I digress.
It's about 40 minutes after I took the meds and the pony sized Vlad is now cow-sized. He requires darkness, stillness, and quiet. When I say requires, I mean that. This is not what Vlad prefers, he is now big enough that he is holding my entire body hostage unless he gets these three needs met. If ignored, he will make me vomit any food or water or medicine I've taken, and I have come close to passing out from not providing them. Strength of every kind leaves me. Knees buckle. Speech goes. The whole she-bang hits the fan.
So, now, I am providing Vlad his needs. I am alone in my dark bedroom lying still with the ball of my hand pressing my third eye. This seems to be an iota of relief. Not sure why but, it is. I sometimes lie with cold towels or wet cloths over my face or around my neck. Mostly I just pray for passing out so I am not any longer awake for the suffering. Vlad is now the size of that really big bear they have stuffed at the Cabela's store. Maybe 15 feet tall or more. But, don't imagine him as beautiful like the bear, he's still the Gila monster mutation with mange and dead scales. It is a sight to behold, let me tell you. And, now he is snacking on my skull and my brain. Yes. He Is. Eating it and not in bear sized bites. In dainty little tea-time sized bites. Eating my brain. While I am alive. I pray to the Virgin Mary to just sleep. Please let me sleep. Most times, I wake up and Vlad has gone back to his backpack and life is again wonderful. Sometimes, Vlad is still with me, but beagle sized again. Or maybe even mouse-sized, but, he's out of his sanctuary which means my battle is already begun. Since it's not a good idea to take more acute meds at this point, there's nothing for it but stay in darkness, coolness, stillness, quiet to keep him from growing. He's already unhappy. He's gonna grow. This is not conjecture. This is historical data. The headache always progresses without medication in my body. But, I do still need to come out of my bedroom cave now and then to do stuff like feed myself and my animals when I'm alone here. The dog still has got to go out. So, life is not easy. Not at all.
Now imagine this. Vlad has been bear-sized for 2 days, no relief. This makes him grow exponentially. After 5 days Vlad becomes Vladzilla, and that is not a joke. I am so overwhelmed by the sheer pain I am constantly in that I think I lapse into incoherence sometimes. I can only bring myself to whisper, not even speak aloud. I do not want to eat. This has happened to me. This is not fiction.
If you've ever talked with me about my pain, I will have told you that I'd take physical body pain any and every day over the migraines. Now that you have met Vlad and know his true nature, and that he is tethered to me with a ball and chain thingy, you see, pain in my arms, hands, legs, back, it's all not so bad. Yes, it is disabling. No, I cannot drive. No, I cannot work. But, I do not want to die. When Vladzilla is on me, eating my frontal lobe, I do. I truly do want to die. I would never do anything to cause that to happen because it is not for me to make that decision but, I have wanted it. More than once. And, I think I probably will want it again. It is a natural human response to torture. That is what migraine is. Vlad the Torturer. And I am only a human.
There is a shot to be had at emergency rooms which sometimes is effective in disrupting these marathon migraines but, even they do not always work and sometimes have powerful side-effects. If your brain was being snacked on by a bear sized mutated Gila monster, now imagine vomiting until you dry heave. That is worse than just being snacked on. Yes? Yes. Trust me, it is.
Dear Lord, we pray for all the little Vlad's in creation that they make themselves known while they are manageable and do not drive people to madness. We pray especially for those we love never to suffer this kind of head pain. We pray for you to intervene when folks are thinking of permanently solving a temporary problem. In you gentle hands, Amen.
Have happy happy days!
Saturday, August 9, 2014
Frustrating nights
I hate that its 12:30am and I am awake and have bee since about 11pm. At 7 pm my eyes hurt so bad I couldn't keep them open any longer so I took my meds and went to bed. Got several good hours of sleep but, can't seem to get back. And, for my particular set of super-powers, that is not good. Very very not good.
In the middle of reading 4 books right now and also doing 2 different crochet projects. You'd think I wouldn't mind quiet idle time. Books I'm reading on my own are A Serpent's Tooth by Craig Johnson (Walt Longmire series), and A Big Little Life by Dean Koontz. I am listening to Odd Thomas by Dean Koontz. Tim and I are reading together Pines by Blake Crouch. I have a BUNCH more at bat so I read a bit every day and really enjoy it but, I want to be asleep and I'm frustrated.
My life involves MORE than its fair share of managing frustration. I am better at it than I used to be. But it sneaks up on you out of nowhere. I know that is true of everyone, of every life. That's why people lash out at each other, road rage, meltdowns, etc. I, however, have an extremely particular set of super-powers, and once they, or even one of them is triggered, the whole world can change. My view of it, my identity in it. It's danger to me, it's fault for my condition. And, most importantly, my brain's ability to process and communicate information. Real cognitive delay. Real physical debilitation. Then I have to manage all these darn feelings that follow, like resentment, jealousy, fear, rage. And frankly, you'd think after managing all that, I'd be tired enough to sleep through a night. But alas, it is not to be this night.
Think I will read what Walt Longmire and Henry Standing Bear are up to now. It is fun to read dialogue by Henry Standing Bear because he does not use contractions in his sentences. :)
Happy nights!
In the middle of reading 4 books right now and also doing 2 different crochet projects. You'd think I wouldn't mind quiet idle time. Books I'm reading on my own are A Serpent's Tooth by Craig Johnson (Walt Longmire series), and A Big Little Life by Dean Koontz. I am listening to Odd Thomas by Dean Koontz. Tim and I are reading together Pines by Blake Crouch. I have a BUNCH more at bat so I read a bit every day and really enjoy it but, I want to be asleep and I'm frustrated.
My life involves MORE than its fair share of managing frustration. I am better at it than I used to be. But it sneaks up on you out of nowhere. I know that is true of everyone, of every life. That's why people lash out at each other, road rage, meltdowns, etc. I, however, have an extremely particular set of super-powers, and once they, or even one of them is triggered, the whole world can change. My view of it, my identity in it. It's danger to me, it's fault for my condition. And, most importantly, my brain's ability to process and communicate information. Real cognitive delay. Real physical debilitation. Then I have to manage all these darn feelings that follow, like resentment, jealousy, fear, rage. And frankly, you'd think after managing all that, I'd be tired enough to sleep through a night. But alas, it is not to be this night.
Think I will read what Walt Longmire and Henry Standing Bear are up to now. It is fun to read dialogue by Henry Standing Bear because he does not use contractions in his sentences. :)
Happy nights!
Thursday, August 7, 2014
We are Soul Vessels
https://www.facebook.com/lovesongeventsandphotography
http://www.myfoxdfw.com/story/26188527/parents-use-professional-photographer
I saw these photos a few days ago and they have really stayed with me. I am not a mother. But, the strength of the love they felt for that child is something which brings me to tears. The body was the vessel of her soul so, I think it is the loveliest thing possible to capture the image of that soul vessel. Some will not agree and will turn away in distaste. I say, how can you not see the love, the celebration that her soul was with them for all those months, even if in the womb? Would that we all could feel the depth of blessing of children and celebrate all souls, even the ones in vessels which are old or infirm, disabled or injured.
So, my small epiphany from Monroe is this: I am a living soul grateful for every single second. The seconds which are joyful, full of laughter. Those full of awe at my beautiful world. Those which are so overwhelmingly painful I wish to sleep and not awaken. Those which I do not know how I will go on in the face of the difficulty. All of them. This vessel is less beautiful than the one captured in those pictures, in my opinion but, it is the one I'm given and I will HONOR it. It is His gift to me, along with so many other blessings. It houses my soul and that, is the precious part of me. Not my legs, not my nerve endings, not my sometimes functioning brain. My soul.
I had no idea I was going to have a weepy day. But, there it is.
http://www.myfoxdfw.com/story/26188527/parents-use-professional-photographer
I saw these photos a few days ago and they have really stayed with me. I am not a mother. But, the strength of the love they felt for that child is something which brings me to tears. The body was the vessel of her soul so, I think it is the loveliest thing possible to capture the image of that soul vessel. Some will not agree and will turn away in distaste. I say, how can you not see the love, the celebration that her soul was with them for all those months, even if in the womb? Would that we all could feel the depth of blessing of children and celebrate all souls, even the ones in vessels which are old or infirm, disabled or injured.
So, my small epiphany from Monroe is this: I am a living soul grateful for every single second. The seconds which are joyful, full of laughter. Those full of awe at my beautiful world. Those which are so overwhelmingly painful I wish to sleep and not awaken. Those which I do not know how I will go on in the face of the difficulty. All of them. This vessel is less beautiful than the one captured in those pictures, in my opinion but, it is the one I'm given and I will HONOR it. It is His gift to me, along with so many other blessings. It houses my soul and that, is the precious part of me. Not my legs, not my nerve endings, not my sometimes functioning brain. My soul.
I had no idea I was going to have a weepy day. But, there it is.
Tuesday, August 5, 2014
Eating with Awe
For now, begin to look at your body and your soul with wonder. With every morsel you eat, do not presume to understand the mystery that you are. Instead be in awe of each moment of life that courses through your veins, of each breath you inhale and exhale.
-from Table of Plenty
Dear Lord, let me be aware of the beauty that is the creation of my body. Let me be accepting of what I perceive to be imperfections or inconveniences. Let me know that my view of myself is not your view of me, the only view that matters. Others' views ceased mattering long, long ago. Help me to be peaceful in this skin vessel you've provided for my soul. Help me to understand that the incredible engineering involved in keeping it operational is beyond me, and beyond man in general, or there would be no illness. Help me to surrender the youthful beauty it once held with grace and accept the new beauty that is ageing. With every morsel I feed myself, let me feel your love for me. Amen
On a similar "body maintenance" topic, I need a nap DESPERATELY. Let's see if I can succeed.
Have happy happy days!!
-from Table of Plenty
Dear Lord, let me be aware of the beauty that is the creation of my body. Let me be accepting of what I perceive to be imperfections or inconveniences. Let me know that my view of myself is not your view of me, the only view that matters. Others' views ceased mattering long, long ago. Help me to be peaceful in this skin vessel you've provided for my soul. Help me to understand that the incredible engineering involved in keeping it operational is beyond me, and beyond man in general, or there would be no illness. Help me to surrender the youthful beauty it once held with grace and accept the new beauty that is ageing. With every morsel I feed myself, let me feel your love for me. Amen
On a similar "body maintenance" topic, I need a nap DESPERATELY. Let's see if I can succeed.
Have happy happy days!!
Thursday, July 31, 2014
I love it when a plan comes together
I was right!!!! I got the whole list done, except for the bath, in an hour. One hour people. One. And it's going to storm outside so, I optimized my decent time really well. And, I got to enjoy the satisfaction of crossing things off the list. I had forgotten how much I love that. So many accomplishments all in a row!
Big vacation coming up next month. Scheduled whale-watching trip this morning. Very excited. Will just pray the $ isn't wasted on my ticket and that my health allows me to enjoy that shore excursion to some degree. Tim will enjoy it for me, if not. Many years have gone by with no fun vacation to look forward to, due to illnesses. That only makes this year and this vacation all the sweeter. Neither of us have ever cruised before.
Lord, I thank you for your many blessings in my life and in this world. Please help me always to have a grateful heart. Help me to remember that if not for your grace, I might be homeless, hungry, alone and truly, truly suffering. Help me to remember that others do live in this way and please come into their hearts to comfort them in a way they can receive. Amen.
Big vacation coming up next month. Scheduled whale-watching trip this morning. Very excited. Will just pray the $ isn't wasted on my ticket and that my health allows me to enjoy that shore excursion to some degree. Tim will enjoy it for me, if not. Many years have gone by with no fun vacation to look forward to, due to illnesses. That only makes this year and this vacation all the sweeter. Neither of us have ever cruised before.
Lord, I thank you for your many blessings in my life and in this world. Please help me always to have a grateful heart. Help me to remember that if not for your grace, I might be homeless, hungry, alone and truly, truly suffering. Help me to remember that others do live in this way and please come into their hearts to comfort them in a way they can receive. Amen.
Wednesday, July 30, 2014
1. Write list
I have not been very efficient with my allotted energy lately and I've just realized the reason. Lack of my usual list. I find I get up in the mornings, wander out of my room and just stand there like I've emerged onto a new planet and have to figure everything out fresh that morning. I see that there is a dog and a cat hovering around me and I know they want food and water and potty but I just stand there thinking about it and also thinking gee, I'm hungry. Oh, look at all those dishes. Oh, and the dishwasher is full, but it is clean, so it needs to be unloaded. Oh and the cat puked over there. Oh, and I need my meds. And so for the first hour or so of my day, I just wander around like a pinball in an old-fashioned arcade machine touching on every one of those and completing none of them. The rub is this. That hour is supposed to be my BEST hour. At least it used to work that way. My mind was at its clearest. My physical symptoms at the minimum. Now, I'm not sure what has changed but, it could be the lack of a list. I can remember having a list that helped guide me through normal chores and kept me on the path of accomplishment but for some reason, I've gotten away from it. I guess it was those months of not being able to do more than the bare minimum. Tomorrow, I will reinstate the list. Here is a template:
1. Change all animal water - 4 bowls
2. Feed dog
3. Measure cat's consumed food and record it.
4. Feed cat.
5. Give cat pill.
6. Make smoothie for me.
7. Make toast for me.
8. Take pills
9. Scoop litter boxes
10. Put clean dishes away
11. Wash dirty dishes.
12. Take bath.
I know that seems elementary but, if it is not laid out like that, I can't remember to do stuff. Can y'all? I got up at 8:15 this morning and now it is noon and I just finished that list. No, I did not do anything else except text my neighbor. That's all. But, I did not have the list to go by. Tomorrow, when I have the list, I think I will save myself at least an hour and a half of standing around in utter confusion. Fingers crossed.
1. Change all animal water - 4 bowls
2. Feed dog
3. Measure cat's consumed food and record it.
4. Feed cat.
5. Give cat pill.
6. Make smoothie for me.
7. Make toast for me.
8. Take pills
9. Scoop litter boxes
10. Put clean dishes away
11. Wash dirty dishes.
12. Take bath.
I know that seems elementary but, if it is not laid out like that, I can't remember to do stuff. Can y'all? I got up at 8:15 this morning and now it is noon and I just finished that list. No, I did not do anything else except text my neighbor. That's all. But, I did not have the list to go by. Tomorrow, when I have the list, I think I will save myself at least an hour and a half of standing around in utter confusion. Fingers crossed.
Tuesday, July 29, 2014
Knew I shouldn't have gotten out of bed.
Yesterday, my migraine grew to such horrendous proportions that when I woke up this morning, I could still feel it in my head. I have been "caring" for it all day. I had to really pep talk myself into getting out of bed at all. Here is how I can best describe it.
When I went to bed last night, it felt like maybe a refrigerator, a large deluxe one, not a dorm sized deal, was in the space where my head used to be and that it was really angry, since in my description, appliances have feelings. I went to bed at about 7:30 pm with all my normal pills and my migraine pills in me. Slept through the night only waking a couple of times. At 7 am, woke with a normally shaped head again. Deep in the center of the skull was an almond. I could feel it and it wasn't angry yet, just annoyed. So, you see, I knew I shouldn't have gotten out of bed. I should have just let the almond have its way and stayed in the dark and cozy, cool cave of my room, keeping her appeased. I didn't. I haven't spent very many hours up, though. I have spent almost all of my day in my dark guest room, lying on the couch, with a cold towel on my head and face. And so she grew. By keeping 2 sets of sunglasses on inside and by keeping my activity level very low, which for me is really just being still, I managed to keep her from getting beyond dishwasher sized. I had been taking my medicine every day for a few days and I am aware how careful I need to be with that. Frequent medication use can cause rebound headaches and you don't really know when you cross into that area. So I was determined to just sit this one out and not medicate it. Took Valium at night to help me pass out. And, of course, she was still with me when I woke the next morning. She was baseball sized and had the attitude and smarty-pants of a spoiled 7-year-old. Again, with the sunglasses for me and the no medicine. I was telling my friend about my new brain roommate and that I thought this might be one of those ones that would just stay with me until I went to the ER for whatever pain shot they give for migraines. She told me to take one of my super duper pain pills (hydrocodone) now (at noon), while it was still smallish and eat, and go straight back to bed. I did that and it killed her!!! YIPPEE! I woke up at 3:30 pm and couldn't feel it anymore. Had an entire afternoon and evening without a headache. It is back this morning but not only maybe almond-sized again. It feels asleep, not annoyed or angry yet. So, we'll see how I do in controlling her today. My physical pain is far greater today so, I'm hoping for that to be a trade-off. Much rather body pain than head pain.
When I went to bed last night, it felt like maybe a refrigerator, a large deluxe one, not a dorm sized deal, was in the space where my head used to be and that it was really angry, since in my description, appliances have feelings. I went to bed at about 7:30 pm with all my normal pills and my migraine pills in me. Slept through the night only waking a couple of times. At 7 am, woke with a normally shaped head again. Deep in the center of the skull was an almond. I could feel it and it wasn't angry yet, just annoyed. So, you see, I knew I shouldn't have gotten out of bed. I should have just let the almond have its way and stayed in the dark and cozy, cool cave of my room, keeping her appeased. I didn't. I haven't spent very many hours up, though. I have spent almost all of my day in my dark guest room, lying on the couch, with a cold towel on my head and face. And so she grew. By keeping 2 sets of sunglasses on inside and by keeping my activity level very low, which for me is really just being still, I managed to keep her from getting beyond dishwasher sized. I had been taking my medicine every day for a few days and I am aware how careful I need to be with that. Frequent medication use can cause rebound headaches and you don't really know when you cross into that area. So I was determined to just sit this one out and not medicate it. Took Valium at night to help me pass out. And, of course, she was still with me when I woke the next morning. She was baseball sized and had the attitude and smarty-pants of a spoiled 7-year-old. Again, with the sunglasses for me and the no medicine. I was telling my friend about my new brain roommate and that I thought this might be one of those ones that would just stay with me until I went to the ER for whatever pain shot they give for migraines. She told me to take one of my super duper pain pills (hydrocodone) now (at noon), while it was still smallish and eat, and go straight back to bed. I did that and it killed her!!! YIPPEE! I woke up at 3:30 pm and couldn't feel it anymore. Had an entire afternoon and evening without a headache. It is back this morning but not only maybe almond-sized again. It feels asleep, not annoyed or angry yet. So, we'll see how I do in controlling her today. My physical pain is far greater today so, I'm hoping for that to be a trade-off. Much rather body pain than head pain.
Wednesday, July 23, 2014
My version of granola bars
Make my version of granola bars or your own version. This template allows for us all to be granola happy. Thanks Vegetarian on the Cheap!
So, my personal adjustments to this
template is the following:
3 C oats
½ c flaxseeds
½ c pumpkin seeds or sesame seeds,
or ¼ c ea.
1 ½ tsp sea salt
1 tsp cinnamon
½ tsp cayenne pepper
¼ c raw honey
½ c peanut butter
¼ c brown sugar
¼ c Splenda
2-3 tbsp water
1/3 cup good chocolate chips or
chunks
I found that following her specific recipe
above left me with too many dry toasty ingredients so, I added some optional
tablespoons of water into the gooey part.
Also, nuts seem to be more expensive
than seeds so I use more seeds in mine.
But, I have used both chopped almonds and chopped walnuts. Use anything you like. That’s what make these so great, they’re
uniquely yours!
I wanted to not use agave nectar
because it’s not as good as raw honey.
Also I know some of y’all don’t use Splenda. Surely it could be omitted and you could use
stevia and just add a few drops at a time to taste.
I have also used vanilla powder and
almond extract. You can really make an
original batch every time if you want to.
In my opinion, if you are going to add chocolate chips, add good
ones. Don’t bother with low quality
chocolate. It is just gonna make you
crave more chocolate, where just one chip of very good chocolate has more
satisfaction.
I have used dried fruit before,
cranberries once and apricots another time.
But my favorite way is to make it a bit spicy with the cayenne
pepper. Then when I have everything
mixed and press it onto my parchment covered sheet, I sprinkle the chocolate
over the whole thing and take the bottom of the measuring cup and sort of press
the chocolate chips into the mix. Just
don’t want them sitting on top.
I also do not leave in the oven for
30 min. For 20 at most. When it starts to smell, I’d take them
out.
Thanks to Vegetarian on the Cheap
for her blog and coming up with this!
Happy cooking,
Marie
Tuesday, July 22, 2014
Calm down day
My sweet friend came to visit with me today and we took a picnic of burgers and onion rings out to the marina at Eagle Mountain Lake. Watched the ducks and again realized the beauty of God's creation. The lake was super calm. It was really too hot for me to even get out of the car but, I thoroughly enjoyed the outing. And I really needed it.
I have taken some steps in figuring out how to help Lea right the wrong going on in that corner of the world. See FURIOUS if you don't know about her. I have also come to realize that anger, real pure furious anger, is as good a pain-killer as laughter. Screaming, cussing, wanting to ruin another person in a LARGE variety of ways, releases all the same life-affirming endorphins as does joy and its expression. This was news to me and since I'm now quite angry, its very handy. In fact, I'll need to keep an eye out so I don't let it become a stressful event for me.
Made some phone calls today to some certification boards and found out facts that I suspected to be true, are indeed true. Since I am only one person, I have no idea how I will make the ripple effect large and wide enough to touch all those defrauded but, I will try to chip away at it and keep the anger in my pocket for my own use.
Update 7/22/2014: Have reached out to an investigative journalist. Encouraging others not to just take it for granted that folks can say they are an ND. For that matter Oscar here is an ND, an no regulatory organization can say otherwise. Its ridiculous.
I have taken some steps in figuring out how to help Lea right the wrong going on in that corner of the world. See FURIOUS if you don't know about her. I have also come to realize that anger, real pure furious anger, is as good a pain-killer as laughter. Screaming, cussing, wanting to ruin another person in a LARGE variety of ways, releases all the same life-affirming endorphins as does joy and its expression. This was news to me and since I'm now quite angry, its very handy. In fact, I'll need to keep an eye out so I don't let it become a stressful event for me.
Made some phone calls today to some certification boards and found out facts that I suspected to be true, are indeed true. Since I am only one person, I have no idea how I will make the ripple effect large and wide enough to touch all those defrauded but, I will try to chip away at it and keep the anger in my pocket for my own use.
Update 7/22/2014: Have reached out to an investigative journalist. Encouraging others not to just take it for granted that folks can say they are an ND. For that matter Oscar here is an ND, an no regulatory organization can say otherwise. Its ridiculous.
Sunday, July 20, 2014
FURIOUS
It's 12:11am and ludicrous that I'm still awake. I have even taken something to hopefully knock me out but, I guess my fury is stronger than my need to rest. I will try to express some of it here now so as to maybe sleep some tonight.
I have no desire to be involved in a lawsuit of any kind so I will not use any names and the entire thing is "hypothetical". Let's say I'm hypothetically infuriated. And I want to act but I'm not sure what to do. I know about something happening that is WRONG.
Let's say, for giggles, my friend has a chronic illness. Her name is Lea. Lea has joined a group on a social networking site related to such chronic illness. Let's say also that this closed group has an administrator who has a bunch of alphabet soup after her/his name and has a website and has written several books. Let's also say said administrator frequently promotes books to members of the closed group/patients who are looking for relief from their chronic problem. Let's go even further and say this: Lea has an acute issue of symptoms for the first time in 3 years. Administrator tells Lea to give a full report of, let's say, exercise, or maybe diet, or maybe sexual activity, or some specific behavior which she controls. Admin wants a journal of 5 days worth of this activity and will then tell Lea what she did wrong to bring on the issue.
Now, let's also add that Lea's illness is proven to be related to a very specific malfunction in the body which is still not understood well and is not treated effectively by medicine. But, the cause of the problem is known. And Lea knows now that no behavior she acted out brought on the current issue. It couldn't have because, the source of the problem is entirely unrelated to the aforementioned behavior that the Admin wanted a journal about.
So, Lea does some digging. She finds out that at least 75% of the credentials of the admin, printed on the website and also on covers of many books, are fraudulent. She discovers that the school where the admin earned her/his degree does not even offer one of the degrees she/he claimed to earn there. (He claims 3 different degrees.) Also, she learns that said college chose to close its doors about 5 years ago instead of doing what was necessary to become an accredited institution by the U. S. Dept. of Education. Also, the college was distant learning only. No campus. The kind of degree she/he claims to have could only have been earned at a college with a campus because some of it quite literally requires that he put her/his own hands on things/people/whatever as part of the learning experience.
So here is what we have. An "expert" in the field of her chronic illness telling her that she/he can positively identify the reason she is having trouble today. The professional association that she/he claims to be part of does not list her/his name though. Also, she/he brags that she/he is certified in a separate field. Lea finds out that to be certified in that field, one needs only to have a GED, $470.00, and to pass a mail-in exam. They give a year to finish the exam and you're supposed to use any books you need for answers. A year. A GED, 500 bucks and a year. This makes her/him an expert.
Here is where my fury begins. I do not think this is incompetence on his part. I do not think she/he assumes that these degrees are real, or legit at all. My belly, which is very wise, tells me that she/he is labeling himself as this expert in order to sell Lea and others like her the collection of her/his books. Lea is desperate for her illness to go away. She/He is preying on this desperation. She/He is a fraud. The cover of her/his book reads, hypothetically "by Fred Flintstone, Ph.D, N.D., MH, C.N.C. and she knows that most of the other folks who have this chronic problem are not at all aware that they are being lied to. She used ALL of her spoons today to discover the truth behind all those letters as they relate to this administrator.
And now she knows the truth and doesn't know what to do about it. So, I am praying for Lea. Please pray for her with me. This is a smallish issue in the large picture of the world. But, in her world, it is a very large issue for snake-oil salesmen to trick her into spending money she doesn't have on an invalid cure.
If anybody has any REAL advice I can pass on to Lea, please let me know.
Let's pray tonight not only for guidance for her but for snake-oil folks to come to see the light of Christ.
Have happy nights.
I have no desire to be involved in a lawsuit of any kind so I will not use any names and the entire thing is "hypothetical". Let's say I'm hypothetically infuriated. And I want to act but I'm not sure what to do. I know about something happening that is WRONG.
Let's say, for giggles, my friend has a chronic illness. Her name is Lea. Lea has joined a group on a social networking site related to such chronic illness. Let's say also that this closed group has an administrator who has a bunch of alphabet soup after her/his name and has a website and has written several books. Let's also say said administrator frequently promotes books to members of the closed group/patients who are looking for relief from their chronic problem. Let's go even further and say this: Lea has an acute issue of symptoms for the first time in 3 years. Administrator tells Lea to give a full report of, let's say, exercise, or maybe diet, or maybe sexual activity, or some specific behavior which she controls. Admin wants a journal of 5 days worth of this activity and will then tell Lea what she did wrong to bring on the issue.
Now, let's also add that Lea's illness is proven to be related to a very specific malfunction in the body which is still not understood well and is not treated effectively by medicine. But, the cause of the problem is known. And Lea knows now that no behavior she acted out brought on the current issue. It couldn't have because, the source of the problem is entirely unrelated to the aforementioned behavior that the Admin wanted a journal about.
So, Lea does some digging. She finds out that at least 75% of the credentials of the admin, printed on the website and also on covers of many books, are fraudulent. She discovers that the school where the admin earned her/his degree does not even offer one of the degrees she/he claimed to earn there. (He claims 3 different degrees.) Also, she learns that said college chose to close its doors about 5 years ago instead of doing what was necessary to become an accredited institution by the U. S. Dept. of Education. Also, the college was distant learning only. No campus. The kind of degree she/he claims to have could only have been earned at a college with a campus because some of it quite literally requires that he put her/his own hands on things/people/whatever as part of the learning experience.
So here is what we have. An "expert" in the field of her chronic illness telling her that she/he can positively identify the reason she is having trouble today. The professional association that she/he claims to be part of does not list her/his name though. Also, she/he brags that she/he is certified in a separate field. Lea finds out that to be certified in that field, one needs only to have a GED, $470.00, and to pass a mail-in exam. They give a year to finish the exam and you're supposed to use any books you need for answers. A year. A GED, 500 bucks and a year. This makes her/him an expert.
Here is where my fury begins. I do not think this is incompetence on his part. I do not think she/he assumes that these degrees are real, or legit at all. My belly, which is very wise, tells me that she/he is labeling himself as this expert in order to sell Lea and others like her the collection of her/his books. Lea is desperate for her illness to go away. She/He is preying on this desperation. She/He is a fraud. The cover of her/his book reads, hypothetically "by Fred Flintstone, Ph.D, N.D., MH, C.N.C. and she knows that most of the other folks who have this chronic problem are not at all aware that they are being lied to. She used ALL of her spoons today to discover the truth behind all those letters as they relate to this administrator.
And now she knows the truth and doesn't know what to do about it. So, I am praying for Lea. Please pray for her with me. This is a smallish issue in the large picture of the world. But, in her world, it is a very large issue for snake-oil salesmen to trick her into spending money she doesn't have on an invalid cure.
If anybody has any REAL advice I can pass on to Lea, please let me know.
Let's pray tonight not only for guidance for her but for snake-oil folks to come to see the light of Christ.
Have happy nights.
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