So, so grateful to the DFW Fibro Support Group and its Leadership Team and that I was able to attend yesterday's meeting. Inspired now to write just a bit.
Firstly, I would like to encourage any of you pain warriors to follow a couple tips that I wish I'd have taken in the early years.
1. Let go of what you think society expects of you.
2. Let go of what you think your life should look like.
3. Develop the skill to sit with your own company. Just you. No phone, no bike, no motorcar, not a single luxury, like Robinson Caruso, as primitive as can be. Ok. Sorry, for the Gilligan digression. Seriously, you need to get to know yourself better than you do. Trust me.
Society, our culture, and especially all the in-your-face media we are exposed to constantly show us others. What everybody else is doing, thinking, wearing, saying. We are shown how to be entertained, how to entertain. We are given bits of news that are mountains made from molehills because of some political spin or somesuch. And we interpret these wearers, doers, sayers, entertainers, and entertained as how WE should be. How I should live. What is expected of me by others. Here is the truth. This expectation of wearing, doing, blah, blah, blah, blah is a falsehood. You can choose to buy into it or not. Even if you have in the past, now your illness gets in the way and you are sad you can no longer curl/straighten your hair like you used to, etc. Let go. Just let go of it. I GUARANTEE you will feel better. It is too heavy and your physical, mental, and emotional ability to lift such inferred expectations is now limited. You are not required to be like others. In fact, you're going to be happier when you stop comparing your life with theirs. Believe it.
Next, none of us thought we'd get sick. We all, well most of us, had plans, dreams, goals. I used to be just very neat. In my ideal life, there isn't anything out of place, not in my purse, on my nightstand, in my kitchen, no where. I like my surroundings clean and tidy. But, that is too big a challenge to perform for me now. I can't be neat and tidy. It takes more energy than I have in my bank. So, I have to let go of it. Does it bug me when the house looks messy? Yup. Do I do what I can, and sometimes overdo it? Yup. But, I do not drag with me any expectation of what it "should" be like. "Should" left the building when Elvis did. Should is a guarantee of self-disappointment, in my world. I thought I'd be married, and I am. I thought I'd have children. Nope. Many my age even have grandchildren. Again, nope. I thought I'd have somewhere to go each day. Nope. I thought there would be people I'd see every day that made me feel like I was a valuable member of some group. Again nope. My life doesn't look like that at all. And that's ok. Once I let go of who I expected myself to be, I was free to become who I am. And, btw, I'm a bit awesome. lol
I have a very small life. And, I have a happy life. But, my funeral, whenever that is, won't fill any church, not by half. Because, I am largely unknown. I am too limited to make myself known to very many, and too limited to do what I'd like to do. But, my limitations brought Christ deeper into my heart, so I'd not trade them. Did I think I'd be able to run for breast cancer? Absolutely. Would I have liked to be able to join all the women yesterday who protested. Uh-huh. Do those activities fit into what my abilities allow? Again, negatory. So, forget about who you thought you'd become. You are going to be left smashing your beautiful, unique, fragile head against an RPG. It will end all kinds of bad. Become who you are. You are still able, whatever that looks like in your world. Even if what you are able to do is smile, pray, think, read. Those are glorious things. Would I want to be able to handle myself if I were attacked in some way. I would. That's why I joined the self-defense class at the Y, where I met my spouse. I wanted my life picture to include that color, that ingredient. Does it now? No way. Am I super vulnerable to somebody with ill intentions? I am. Is that uncomfortable? Yes, yes it is. But, that is what the picture of my life's reality looks like. I cannot unpaint the picture. I am unable to defend myself physically. So, I have to learn to be ok with that. I have to figure out how to venture into the world alone without fear. And I have. I encourage you to let go of what you think you "should" be doing in your life. You are now on the little road less traveled. The highway is the wrong path, you will suffer there.
Next, have a self-date. Have a bunch of them. Learn about you like you never met yourself before. Sit, without any noise of any kind, no music, nothing. Find quiet. If you have to wear some earplugs, do that. Block out the world's noise. Close your eyes to visual stimulation. If you don't do that easily, put on a sleep mask. Find a place in your world where the energy feels good. We all know what that means. Some places you just walk in, and they feel tense, a sense of unease. Find one that knows peace. Get into whatever position is comfortable for you. Breathe. Soon, your breathing will become deeper very naturally. You can shut up your head by guiding where it focuses. If you focus on the muscles of your toe, you cannot think of anything else. It creates stillness in your mind. It gives you space for your mind itself to breathe, not just your lungs. Just lay there in your own company and feel yourself in your skin. Listen to your heart. Feel compassion for yourself. Fall in love with yourself. You will never break your own heart. The more you can learn to enjoy your own company, the more you will want to, you will look forward to it. This does not create antisocial behaviors. What it does do is prevent loneliness, a bit. When we are comfortable being alone, it isn't such a sting when it happens against our will, or because illness necessitates it. Learn and know yourself. You probably rock.
Ok, so there have been a few other personal developments in life lately. But now I must stop and go take medicine, I am 10 minutes late already.
Grateful for yesterdays group, and for my effort to get myself there.
Have happy, happy days.
M
Sunday, January 22, 2017
Sunday, January 1, 2017
The word of the year....
is PEACE. I am not one to make resolutions. I have never been one to do that. But, a friend in a support group encouraged us all to choose one word to guide us through our year ahead. Something that we cherish. Something within our ability to accomplish. Many words were listed, like joy, stamina, communication, hope, fearlessness. Mine is peace. When I feel peaceful, I can endure the discomfort of my body-vessel with far more ease and compassion and understanding than when I lack peace. Without peace, anxiety creeps in. With anxiety, fear. And fear just opens the door to depression. And depression is just a liar. It tries to make me believe what I know to be untrue. And it is very clever and many times is successful in its venture. So, I aim to hold on to my peace. Not let it slip or be stolen away by people, by circumstance, by situation, by symptoms. For that to be my priority, to take care of my peace. Like in Home Economics class in the 7th grade, when we got eggs to care for..... so will my peace be cared for. This is my promise to myself.
I have a full week of physical testing in front of me next week. Also, I am now wearing braces on both my knees, which is a new thing for me. When I take the braces off, the pain in them is just white hot. Both feel very much like if they bend too far, something is going to snap. I have an appointment with a doctor on Tuesday to have them seen to and assessed. It's interesting that no matter how many different symptoms I live with constantly, new ones still alarm me. This is one I will go get attention for.
I have gone for a full month without using any prescription migraine abortive. The first time ever I have written that sentence. During December, I did get some headaches. A few times, I took Excedrin Migraine and it helped. A few other times, I used peppermint oil, sunglasses, and a cold frogg towel, which worked to help. Twice they were so bad that I did have to pull myself out of life, and retreat to darkness to wait it out and pray for sleep. Only twice. All the other ones were bearable. Even when the remedies didn't help to decimate them all the way, they didn't get so bad that I had to remove myself from my activities to endure them. I have tried something new and herbal called Migraine Stop which is a specially formulated magnesium that crosses the blood-brain barrier. Both times it worked. The blessing it is to live without migraines cannot be understated, and I recognize the lack of head pain and thank God for it every time I think to.
May we all look toward the New Year as an opportunity to be the kind of people we were designed to be. My tea bag this morning was meant especially for this day. And I am taking on the challenge.
I have a full week of physical testing in front of me next week. Also, I am now wearing braces on both my knees, which is a new thing for me. When I take the braces off, the pain in them is just white hot. Both feel very much like if they bend too far, something is going to snap. I have an appointment with a doctor on Tuesday to have them seen to and assessed. It's interesting that no matter how many different symptoms I live with constantly, new ones still alarm me. This is one I will go get attention for.
I have gone for a full month without using any prescription migraine abortive. The first time ever I have written that sentence. During December, I did get some headaches. A few times, I took Excedrin Migraine and it helped. A few other times, I used peppermint oil, sunglasses, and a cold frogg towel, which worked to help. Twice they were so bad that I did have to pull myself out of life, and retreat to darkness to wait it out and pray for sleep. Only twice. All the other ones were bearable. Even when the remedies didn't help to decimate them all the way, they didn't get so bad that I had to remove myself from my activities to endure them. I have tried something new and herbal called Migraine Stop which is a specially formulated magnesium that crosses the blood-brain barrier. Both times it worked. The blessing it is to live without migraines cannot be understated, and I recognize the lack of head pain and thank God for it every time I think to.
May we all look toward the New Year as an opportunity to be the kind of people we were designed to be. My tea bag this morning was meant especially for this day. And I am taking on the challenge.
Grateful for the combination of details that make my life so easy and comfortable. Fresh, available, abundant food and water. A safe, secure structure to live inside. Electricity to make life fun, easy, comfortable, the cool air in summer and heat in winter. Plumbing, so our streets don't run with raw sewage like some areas in this world. Access to medicines. And simple faith. Because faith is really the simplest of all things. You just step off the cliff. Grateful for my faith.
Have happy happy happy days all. Let's all be LIGHTHOUSES!!!!!
Sunday, December 4, 2016
Thimbleful of LEGIT Hope
It is an amazing thing to have hope when there previously wasn't much. The metaphor for the hope I feel after this week's doctor visit is like I can see there is a thimbleful of hope in California. Since I am in Texas, it is a distance off. Will take much time, energy, help and logistics to be in the vicinity of the hopeful event itself, but, the possibility exists. It shines up from CA like a rainbow exploding from a thimble. I can see the exploded rainbow from here in Rowlett, TX. I know that some of it is meant for me. I know this now.
I had a magical doctor visit this week. I saw a cardiac electrophysiologist. Not going to go into the facts yet, since there really aren't any firm ones until after all the testing during the first week of January. However, I did leave that office with 3 monitors hooked up to me. At one point during the examination he said to me "Why has no one seen this in you before? Why has no doctor recognized this?" Understand me fully when I say that I wanted to weep with the joy of hearing those words. That sentence relieved my depression and soothed my soul. I finally found the doctor who knows whats wrong and gives a damn. He spent time explaining. He asked me what questions I had. He informed me the testing plan and sent me home with monitors. He gave me his tentative opinion of who he thinks he will also be referring me to for other specific things. He is fully invested in and planning to care for me. And my mood is joyful. I'm in a lot of pain, and not sleeping great but, I'm joyful. I decorated our Christmas tree early yesterday. Of the last eleven Christmases, I've only decorated the tree for maybe half of them. Partially because it is so much work. Partially because there needs to be a certain joyful feeling to motivate me to do so. I am overfull with that now.
I had a feeling when I opened that Christmas ornament on Thursday evening of the Snowman Doctor with the cardinal that the whole army of my angel loved ones would be pulling for me during that appointment. And they were. I am validated. Something is very much wrong. And that thing might not be able to be fixed. But, I'm not scared. I'm thrilled. I've found someone who understands my problem and cares. Even if my quality of life can only be lifted marginally, I'm thrilled. I get to understand WHY I function and feel this way. Maybe not for months yet, maybe not until I visit some other specialists, but, this is legitimately the beginning of the real deal. I'm not just "more disabled by my fibromyalgia than all other fibro folks I know", I actually have deep root causes and more than a few things are very wrong. And I'm not worried. Not scared. I am actually excited because even really bad news is so much better than living sort of like "how come I can't walk but everyone else at the support group can?" I am going to finally get the PROPER diagnosis. I am going to finally see the PROPER doctors for the actual things that are wrong with me, instead of just seeing doctors to give me medicines to relieve symptoms. I will still do that too, because from what I understand, much of what I face isn't curable, but maybe more manageable than I'm handling it now. There's no question that I've got fibromyalgia, but it's secondary. As are the migraines. As is the depression. I'm on the path to finally naming and caring for the PRIMARY problems.
I'm grateful today like never before. I really, truly am. That Snowman Doctor with the cardinal, I'm super grateful for that because it was the communication vessel that I'd be cared for. And I am.
I had a magical doctor visit this week. I saw a cardiac electrophysiologist. Not going to go into the facts yet, since there really aren't any firm ones until after all the testing during the first week of January. However, I did leave that office with 3 monitors hooked up to me. At one point during the examination he said to me "Why has no one seen this in you before? Why has no doctor recognized this?" Understand me fully when I say that I wanted to weep with the joy of hearing those words. That sentence relieved my depression and soothed my soul. I finally found the doctor who knows whats wrong and gives a damn. He spent time explaining. He asked me what questions I had. He informed me the testing plan and sent me home with monitors. He gave me his tentative opinion of who he thinks he will also be referring me to for other specific things. He is fully invested in and planning to care for me. And my mood is joyful. I'm in a lot of pain, and not sleeping great but, I'm joyful. I decorated our Christmas tree early yesterday. Of the last eleven Christmases, I've only decorated the tree for maybe half of them. Partially because it is so much work. Partially because there needs to be a certain joyful feeling to motivate me to do so. I am overfull with that now.
I had a feeling when I opened that Christmas ornament on Thursday evening of the Snowman Doctor with the cardinal that the whole army of my angel loved ones would be pulling for me during that appointment. And they were. I am validated. Something is very much wrong. And that thing might not be able to be fixed. But, I'm not scared. I'm thrilled. I've found someone who understands my problem and cares. Even if my quality of life can only be lifted marginally, I'm thrilled. I get to understand WHY I function and feel this way. Maybe not for months yet, maybe not until I visit some other specialists, but, this is legitimately the beginning of the real deal. I'm not just "more disabled by my fibromyalgia than all other fibro folks I know", I actually have deep root causes and more than a few things are very wrong. And I'm not worried. Not scared. I am actually excited because even really bad news is so much better than living sort of like "how come I can't walk but everyone else at the support group can?" I am going to finally get the PROPER diagnosis. I am going to finally see the PROPER doctors for the actual things that are wrong with me, instead of just seeing doctors to give me medicines to relieve symptoms. I will still do that too, because from what I understand, much of what I face isn't curable, but maybe more manageable than I'm handling it now. There's no question that I've got fibromyalgia, but it's secondary. As are the migraines. As is the depression. I'm on the path to finally naming and caring for the PRIMARY problems.
I'm grateful today like never before. I really, truly am. That Snowman Doctor with the cardinal, I'm super grateful for that because it was the communication vessel that I'd be cared for. And I am.
Monday, November 28, 2016
Bonafide cheering section
I want to first say thank you to my bonafide cheering section in the world. I forget that you're there and then when you remind me of your presence, it feels like a gift. I'm so grateful for you few.
The Christmas tree is up and lit. Nothing else decorates it yet but, progress has been made. I did neither of those tasks, btw. I knocked a couple of things off my To Do list today. Maybe half of them. That's solid achievement. Finding my way back toward proper perspective to take a win anywhere I can get one.
Only slept a few hours last night. Haven't suffered physically today as I'd have predicted as the result, except for the migraine, of course. Here's this month's tally. I have two pills left. "They" you know, BIG PHARMA and all their importance and rules, will let me have another 9 pills on Friday. I think I will make it this month. I think I actually will make it. I have to go out tomorrow, but just to a doc appointment and home. Cutting out the swimming. Recognizing it as too much for me in spite of how much I LOVE it. And on Friday, I have a new doc appointment which is predicted to last at least 3 hours, so, saving a pill for that bundle of loveliness. Not gonna lie, nervous about that one. Timothy will be with. Tried twice to nap today, failed twice. But, did get solid rest, which, for today at least, counts.
This year's tree is bittersweet because our kitty LOVED to lay under the Christmas tree. Every year she'd snuggle down. It's only our 2nd Christmas together without her. I just searched for a pic of her under a tree, but couldn't find one, so, here's a lovely one. We don't generally photograph our Christmas trees. In fact, I couldn't find any but, I didn't search all that hard, either.
Anyone who struggles with depression, I highly recommend Furiously Happy by Jenny Lawson. I'm listening to it now for probably the third time. Maybe the fourth.
Let's see, what other minutiae to report? Got some nice Lupine Martingale collars for the dogs and the walking/tugging situation. Today was our first time out with them, and all 3 of us returned home in the original 3 pieces in which we left. Goes without saying that we walked back and forth in front of our home and two homes up and down in each direction, for about 20 minutes. Again, accomplishment. Baby steps, y'all.
It was pointed out to me by my sweet spouse that one of my passwords was ultra-depressing, and I didn't realize that. So, yesterday, I went on a password changing spree. Feels good to shed that negative. No, I will never forget, but that doesn't mean I have to type it in. Now the passwords are positive and factual. And no, they aren't IMISSEVY2. If they were, I'd use IMISSEVYAZILLION2.
I felt weary last week, getting through a family holiday as we do with utter absence of family with us. And the fact that the day after was Monica's birthday, pulled at me. A couple days, I stayed in bed a lot of the daylight hours. As of now, Monday evening of the new week, in the twinkly lights, color twinklies, not white ones, I feel less weary. I am not myself. But, I am also not somebody I don't wanna be, if that makes sense. This is one of those times in my life I am making a conscious effort to be thankful for because, it is in these times that I 1)am reminded of my cheering section, 2)pray more and stop and be still to listen for answers, 3)compare how good things normally are for me, 4)hopefully learn and grow. It's a genuinely uncomfortable time but, I understand its arrival and necessity and I appreciate that I really am being cared for, genuinely cared for.
Got an early Christmas/Birthday present with my new Samsung Tablet. I was gonna write which kind it is but, now its in the protective casing, and I can't remember how to figure it out. My other tablet had become non-responsive. This new one is lovely.
Oh, also selling a few Twiddle Muffs, which is also lovely. Having a "sale" that for every one I sell before the end of the year, I will donate one to a local dementia unit. I put down my crochet several weeks ago because it had become so painful. Haven't picked it back up yet. Emotional armor not strong enough for disappointment again so soon, not to make negative predictions, but you know, just in case it still hurt to hold the hooks. Just in case, I'll be ready soon. Baby steps. Coloring instead now. Nice but, not nearly as lovely as crochet for me.
Have pulled myself away from web searching about miscellaneous health issues. This was/is good advice. Spending very minimal time on social media, in general. Trying to listen to God and hear His will for me. And waiting for doctor appointments. Who sings that song, "the waiiiiting is the hardest part"? Truth. Whatever is, is. The end.
I'm gonna call the stable that's just about a half mile down the road from my neighborhood and ask them if I can come out one afternoon, and just hang. I feel like if I could be in the company of a horse for an afternoon, all would be right with the world again. OK, not all, that is really too much, but, a good bit would feel soothed in my soul. Better? More realistic. A good, good bit of soothing.
Thankful for them. Have happy happy days.
The Christmas tree is up and lit. Nothing else decorates it yet but, progress has been made. I did neither of those tasks, btw. I knocked a couple of things off my To Do list today. Maybe half of them. That's solid achievement. Finding my way back toward proper perspective to take a win anywhere I can get one.
Only slept a few hours last night. Haven't suffered physically today as I'd have predicted as the result, except for the migraine, of course. Here's this month's tally. I have two pills left. "They" you know, BIG PHARMA and all their importance and rules, will let me have another 9 pills on Friday. I think I will make it this month. I think I actually will make it. I have to go out tomorrow, but just to a doc appointment and home. Cutting out the swimming. Recognizing it as too much for me in spite of how much I LOVE it. And on Friday, I have a new doc appointment which is predicted to last at least 3 hours, so, saving a pill for that bundle of loveliness. Not gonna lie, nervous about that one. Timothy will be with. Tried twice to nap today, failed twice. But, did get solid rest, which, for today at least, counts.
This year's tree is bittersweet because our kitty LOVED to lay under the Christmas tree. Every year she'd snuggle down. It's only our 2nd Christmas together without her. I just searched for a pic of her under a tree, but couldn't find one, so, here's a lovely one. We don't generally photograph our Christmas trees. In fact, I couldn't find any but, I didn't search all that hard, either.
Anyone who struggles with depression, I highly recommend Furiously Happy by Jenny Lawson. I'm listening to it now for probably the third time. Maybe the fourth.
Let's see, what other minutiae to report? Got some nice Lupine Martingale collars for the dogs and the walking/tugging situation. Today was our first time out with them, and all 3 of us returned home in the original 3 pieces in which we left. Goes without saying that we walked back and forth in front of our home and two homes up and down in each direction, for about 20 minutes. Again, accomplishment. Baby steps, y'all.
It was pointed out to me by my sweet spouse that one of my passwords was ultra-depressing, and I didn't realize that. So, yesterday, I went on a password changing spree. Feels good to shed that negative. No, I will never forget, but that doesn't mean I have to type it in. Now the passwords are positive and factual. And no, they aren't IMISSEVY2. If they were, I'd use IMISSEVYAZILLION2.
I felt weary last week, getting through a family holiday as we do with utter absence of family with us. And the fact that the day after was Monica's birthday, pulled at me. A couple days, I stayed in bed a lot of the daylight hours. As of now, Monday evening of the new week, in the twinkly lights, color twinklies, not white ones, I feel less weary. I am not myself. But, I am also not somebody I don't wanna be, if that makes sense. This is one of those times in my life I am making a conscious effort to be thankful for because, it is in these times that I 1)am reminded of my cheering section, 2)pray more and stop and be still to listen for answers, 3)compare how good things normally are for me, 4)hopefully learn and grow. It's a genuinely uncomfortable time but, I understand its arrival and necessity and I appreciate that I really am being cared for, genuinely cared for.
Got an early Christmas/Birthday present with my new Samsung Tablet. I was gonna write which kind it is but, now its in the protective casing, and I can't remember how to figure it out. My other tablet had become non-responsive. This new one is lovely.
Oh, also selling a few Twiddle Muffs, which is also lovely. Having a "sale" that for every one I sell before the end of the year, I will donate one to a local dementia unit. I put down my crochet several weeks ago because it had become so painful. Haven't picked it back up yet. Emotional armor not strong enough for disappointment again so soon, not to make negative predictions, but you know, just in case it still hurt to hold the hooks. Just in case, I'll be ready soon. Baby steps. Coloring instead now. Nice but, not nearly as lovely as crochet for me.
Have pulled myself away from web searching about miscellaneous health issues. This was/is good advice. Spending very minimal time on social media, in general. Trying to listen to God and hear His will for me. And waiting for doctor appointments. Who sings that song, "the waiiiiting is the hardest part"? Truth. Whatever is, is. The end.
I'm gonna call the stable that's just about a half mile down the road from my neighborhood and ask them if I can come out one afternoon, and just hang. I feel like if I could be in the company of a horse for an afternoon, all would be right with the world again. OK, not all, that is really too much, but, a good bit would feel soothed in my soul. Better? More realistic. A good, good bit of soothing.
Thankful for them. Have happy happy days.
Tuesday, November 15, 2016
Today I go out
Today is my day out. First the bus picks me up and takes me to the pool. I'll stay there for a couple hours, then take a Lyft car over to my psych appointment. Then the bus picks me up there and brings me home. I look forward to pool day all week. When I am in the pool, I cannot wait for the next day I can get to it. However, the ride home from Plano, mid-day on a bus takes nearly 2 hours, and sometimes more, which needless to say, isn't good for me. But, I still can't wait to get to that warm water. I am free in the water. There isn't any pressure on any part of my body. I have no stress whatsoever. It feels miraculous. Or as close as I think miraculous can, given my hand of cards dealt.
We spread Evy's remains out in front of our home by one of the large trees. I miss her so much. Sometimes the ache begins to abate, and then I remember she isn't going to come around the corner and "I love you" ankle rub me, and then I ache again. It will be a long sad road back from this loss. I did beg God after her initial collapse that He take the decision from Tim and I and when it was time, just to please take her from us. I prayed hard, selfishly, to not have to make the decision. And He granted me that. So, so grateful. She was a super, super quiet kitty so, she was ever present, even though you didn't necessarily hear or see her. She was just always here. I think she had a happy life with us, and that gives me comfort but, the heartache remains. The void is ginormous. More than 12 years as my 24 hour companion. For the first 7, there were no dogs, just me and her.
I finally gathered as much family health history as I possibly could from every parent, sibling, grandparent, aunt, uncle, and first cousin, niece and nephew I have to complete a form for UT Southwestern for them to determine whether I will be admitted to be seen in their Adult Genetics clinic for evaluation. I called the lady's office number on the day I mailed the form to be sure I was sending it all to the right place and chatted with her a moment. She asked what I wanted to be evaluated for and I told her. The next question was whether anyone in my family had had an aneurysm. When I said yes, she said OH, and then she was silent for several beats. That is a scary silence, if you've never heard it. Then she said she'd do her best to process my form quickly when she got it. At that point, there seemed to no longer be a question of whether I'd be seen by them, but only when. When I try and take a step back from my life and look at it, how understandable that I am sometimes just overcome with anxiety. I might have a truly dangerous form of a disease, a chronic and incurable disease. Meanwhile, I already have an illness that leaves me without physical and mental resources to cope very successfully sometimes. I find myself reaching for the newly prescribed Xanax more and more often.
And to make matters even more scary, I will have to find a new mental health professional after only 5 more visits. I have to change insurance, I have to. Mine won't take the new plan. This is something millions of us go through. But, my level of anxiety is so high right now that I feel panic in not knowing who will help me take care of myself. Tim had to pick me up off the kitchen floor in a mess of sobs over the weekend. Grief and fear are very real players in my game right now. They are undeniable. I'm having trouble. Thank God Tim is stable enough to help me, at least he seems to be.
Thankful that it is a pool day. Thankful for my friends who still insert themselves into my life, because I just lack the energy to reach out to them, even though I need them. Thankful for my spouse who so far is not infected by my downward spiral. Prayer for stability and courage.
Have happy, happy days today!
We spread Evy's remains out in front of our home by one of the large trees. I miss her so much. Sometimes the ache begins to abate, and then I remember she isn't going to come around the corner and "I love you" ankle rub me, and then I ache again. It will be a long sad road back from this loss. I did beg God after her initial collapse that He take the decision from Tim and I and when it was time, just to please take her from us. I prayed hard, selfishly, to not have to make the decision. And He granted me that. So, so grateful. She was a super, super quiet kitty so, she was ever present, even though you didn't necessarily hear or see her. She was just always here. I think she had a happy life with us, and that gives me comfort but, the heartache remains. The void is ginormous. More than 12 years as my 24 hour companion. For the first 7, there were no dogs, just me and her.
I finally gathered as much family health history as I possibly could from every parent, sibling, grandparent, aunt, uncle, and first cousin, niece and nephew I have to complete a form for UT Southwestern for them to determine whether I will be admitted to be seen in their Adult Genetics clinic for evaluation. I called the lady's office number on the day I mailed the form to be sure I was sending it all to the right place and chatted with her a moment. She asked what I wanted to be evaluated for and I told her. The next question was whether anyone in my family had had an aneurysm. When I said yes, she said OH, and then she was silent for several beats. That is a scary silence, if you've never heard it. Then she said she'd do her best to process my form quickly when she got it. At that point, there seemed to no longer be a question of whether I'd be seen by them, but only when. When I try and take a step back from my life and look at it, how understandable that I am sometimes just overcome with anxiety. I might have a truly dangerous form of a disease, a chronic and incurable disease. Meanwhile, I already have an illness that leaves me without physical and mental resources to cope very successfully sometimes. I find myself reaching for the newly prescribed Xanax more and more often.
And to make matters even more scary, I will have to find a new mental health professional after only 5 more visits. I have to change insurance, I have to. Mine won't take the new plan. This is something millions of us go through. But, my level of anxiety is so high right now that I feel panic in not knowing who will help me take care of myself. Tim had to pick me up off the kitchen floor in a mess of sobs over the weekend. Grief and fear are very real players in my game right now. They are undeniable. I'm having trouble. Thank God Tim is stable enough to help me, at least he seems to be.
Thankful that it is a pool day. Thankful for my friends who still insert themselves into my life, because I just lack the energy to reach out to them, even though I need them. Thankful for my spouse who so far is not infected by my downward spiral. Prayer for stability and courage.
Have happy, happy days today!
Friday, November 4, 2016
Gotta write
I maybe shouldn't write tonight because the heartbreak is so raw, so new. We got her from a shelter in 2005 just a month or so after I first came down with disabling symptoms. She has been my companion through all of them. Through every single one. She purred next to me when I was sure I'd die from pain. She rubbed against me an "I love you" when I was devastatingly lonely and isolated. And today, she died sort of in my arms as I sang her our song, You Are My Sunshine, while we were in a Lyft on the way to the vet. She was still breathing when we got there, but they told me she was gone by the time the nurse brought her back to the doctors. The worst, the absolute worst is this: I fed her this morning and she didn't seem to be as strong as she was for the last few days, but, I had to get on the bus to go to Dallas for a neurology appointment. At the doctor's office, I learn that, in fact, I have an appointment next Friday, not today. And I was so f******g cheap that I wouldn't take a Lyft home, or call a friend, I just decided since I didn't feel so bad that I had my crochet and my lunch and a book, and I'd just wait the few hours. I should've come home. I just should've. At least she wouldn't have been alone when she collapsed, which is how I found her. God I hope she heard me singing. She was my sunshine. Sweet Evy.
Grateful that the Lord took the decision from me and Tim. Truly grateful for that. And for her presence in our lives.
Grateful that the Lord took the decision from me and Tim. Truly grateful for that. And for her presence in our lives.
Friday, October 28, 2016
Wings
Not big into wishing, but if I were, and if I had one today, I think I'd wish for wings. It hurts too much to walk on my legs. It hurts too much to sit in my wheelchair for more than just a couple minutes at a time. But, I want to move around the planet, too!! Need wings, please. If anyone has a spare pair, I will barter with Twiddle Muffs. Agreed that its possible that the wings could then hurt and there'd be a possibility of just more of me hurting, but I'm willing to risk that at this point. I am OVER just sitting/lying here. Using my spurts as they come, but those feel and actually are so short, so, so short. It stymies me how I can continue to forget how bad flares can be. It is not NORMAL to think that, oh, maybe cutting off my leg really might be a viable solution to this situation in which I find myself. I have another leg. Already have the disability tag and permission to ride the bus. It would be a lot less of me to hurt. Its's amazing. I am actually justifying the idea of cutting off my leg. Who'da thunk?
Grateful that I have neither the strength nor the mental energy to take the plan any further than that. God knows exactly, precisely how much thinkin' I can handle today.
Have happy days.
M
PS, Need wings please.
Grateful that I have neither the strength nor the mental energy to take the plan any further than that. God knows exactly, precisely how much thinkin' I can handle today.
Have happy days.
M
PS, Need wings please.
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