Me and O, 2016

Showing off our end of summer haircuts.  Me and my handsome sidekick.  

Just plain old gratitude. 

Morning Bliss and Severity Explained

I stayed in bed this morning for about 3 extra hours because I was so blissfully relaxed that I was afraid to move. I,  I thought that when I started to move things would start to hurt and that was true and did happen just 4 minutes ago when I finally roused myself to get up.  My body had zero pains in it and I just wanted to wallow for a long time in that. Um,  I knew that the dog had gone out this morning at about 5am and I knew that they both had some food and some water, and I knew that I was only going to have moments free of pain today if I soaked them in this morning.  So, I did.  I didn't sleep much of those hours, but I did lay there and contemplate. And, I cant even remember now what I was thinking about because already the pain is so bad that I have forgotten everything that I wanted to write.  But, I did read a article yesterday and it has made things a little more clear for me.  The article um is by a doctor who said and broke down fibromyalgia into 7 different subsets, 7 different degrees of the disease that affect people.  I have always wondered why I have never met another person who needed to use a wheelchair like I do and the reason is clear in this article.  Um, Mine is subset #6 out of 7 so mine is quite severe and um a lot of people still are diagnosed with it even though they, it might be fine for them to drive around and even to still work and to sort of have more normal functioning in their daily life than I do.  And probably also why they are denied for their disability, because this one word is used to describe such a wide range of the disease. Um,  Makes me feel um validated in the fact that I live with something so severe and so difficult and yet I remain able to not be bitter and angry.  I remain faithful and accepting of it.  I still remain fighting obstacles, real obstacles like loneliness and depression and um trying hard to contribute something of myself into this world so that it will matter that I've lived.  But, knowing that um, the Lord has given me this very personal job of taking care of this very personal vessel in its journey across the Earth.  So, it was a very good article for me to read and I intend to share it with as many people (yawn) as I can that I know who might benefit from it.  Um, I do have one friend who I know fits into subset 7.  She has, um well it might not be subset 7 but its at least subset 6 and its very confusing for those of us who are affected very severely to see other people like able to walk more normally and they still are holding down jobs and they still are they're functioning better than we're functioning.  And its very confusing that we can't do it.  So, I'm very glad that this explains it and that it was written by a doctor and that research has shown it all to be true.  (Yawn.)
 I woke up this morning with a view of Evy sitting in the windowsill of the window in my room and I got to take some pictures of her silhouette through the curtain.  They're very pretty.

 And now shes just sitting here with me on the floor.  We're both just resting a little more before we get up and face the rest of the day and the rest of the house.
Today my goal is to do a couple of loads of laundry, if that's possible, I don't know whether it will be possible.  I also have 2 tiny flowerpots that I would like to pot plants in. And I have the plants, and  I have the dirt, I just have to find the energy to go out to the patio and do it.  So those are my 2 hopes and dreams for this day, that maybe I get a couple of those things done.  I've said my morning prayer to God thanking Him for my so long list of blessings, and I'm glad that I had the good common sense to cancel today's aqua fit class because I would've had to wait there after the class for more than an hour and a half for my ride home and that's just not something that is um doable right now at that location.  There's no good place for me to wait for that long, and its just not within my comfort to do that.  So, I hope I can find some way to translate this into text so maybe I can do my blogging from speaking because it um I, I was able to record things that I was thinking about immediately rather than having to make my way to my computer yawn because as soon as I get out of this bed, what has already escalated in the last 6 minutes will dial all the way up.  I know it, I can feel it.  I just tried to put a little bit of my body weight on one elbow and searing, searing pain shot all the way through from my fingertips up into my back, so I know its waiting for me.  And I  I have the courage to face it now, and I hope that anyone reading just has a truly happy day and enjoys it thoroughly.  Realize that life is absolutely a gift and that if you're too busy to appreciate it, you're too busy.  You need to make a change.  Be less busy and appreciate your life.

PS  I typed this in from my morning recording exactly as I spoke it.  That's why the ums and yawns.

PPS  The article is titled :

The Fibromyalgia Spectrum - Part of the Big Picture in Understanding Fibromyalgia and if you google it, it comes up as result #2.  PPPS  The level of pain throughout the day was not nearly as bad as I anticipated.  The morning was quite bad, and again it got severe at about 5pm, but during the day hours, it leveled off and I didn't need my chair.  I just wanted to make that note, so I can remind myself that no matter how bad it feels, it can get better, and sometimes it does.  I got one load of laundry done plus all the plants potted.  And, organized my recipes plus made dinner.  No nap, which wasn't a great decision but, I sacrificed it to organize the recipes.  I love organizing and recipes, so, fun times here.  Sweet dreams, all.

Morning Bliss and Severity Explained

I stayed in bed this morning for about 3 extra hours because I was so blissfully relaxed that I was afraid to move. I,  I thought that when I started to move things would start to hurt and that was true and did happen just 4 minutes ago when I finally roused myself to get up.  My body had zero pains in it and I just wanted to wallow for a long time in that. Um,  I knew that the dog had gone out this morning at about 5am and I knew that they both had some food and some water, and I knew that I was only going to have moments free of pain today if I soaked them in this morning.  So, I did.  I didn't sleep much of those hours, but I did lay there and contemplate. And, I cant even remember now what I was thinking about because already the pain is so bad that I have forgotten everything that I wanted to write.  But, I did read a article yesterday and it has made things a little more clear for me.  The article um is by a doctor who said and broke down fibromyalgia into 7 different subsets, 7 different degrees of the disease that affect people.  I have always wondered why I have never met another person who needed to use a wheelchair like I do and the reason is clear in this article.  Um, Mine is subset #6 out of 7 so mine is quite severe and um a lot of people still are diagnosed with it even though they, it might be fine for them to drive around and even to still work and to sort of have more normal functioning in their daily life than I do.  And probably also why they are denied for their disability, because this one word is used to describe such a wide range of the disease. Um,  Makes me feel um validated in the fact that I live with something so severe and so difficult and yet I remain able to not be bitter and angry.  I remain faithful and accepting of it.  I still remain fighting obstacles, real obstacles like loneliness and depression and um trying hard to contribute something of myself into this world so that it will matter that I've lived.  But, knowing that um, the Lord has given me this very personal job of taking care of this very personal vessel in its journey across the Earth.  So, it was a very good article for me to read and I intend to share it with as many people (yawn) as I can that I know who might benefit from it.  Um, I do have one friend who I know fits into subset 7.  She has, um well it might not be subset 7 but its at least subset 6 and its very confusing for those of us who are affected very severely to see other people like able to walk more normally and they still are holding down jobs and they still are they're functioning better than we're functioning.  And its very confusing that we can't do it.  So, I'm very glad that this explains it and that it was written by a doctor and that research has shown it all to be true.  (Yawn.)
 I woke up this morning with a view of Evy sitting in the windowsill of the window in my room and I got to take some pictures of her silhouette through the curtain.  They're very pretty.  And now shes just sitting here with me on the floor.  We're both just resting a little more before we get up and face the rest of the day and the rest of the house.
Today my goal is to do a couple of loads of laundry, if that's possible, I don't know whether it will be possible.  I also have 2 tiny flowerpots that I would like to pot plants in. And I have the plants, and  I have the dirt, I just have to find the energy to go out to the patio and do it.  So those are my 2 hopes and dreams for this day, that maybe I get a couple of those things done.  I've said my morning prayer to God thanking Him for my so long list of blessings, and I'm glad that I had the good common sense to cancel today's aqua fit class because I would've had to wait there after the class for more than an hour and a half for my ride home and that's just not something that is um doable right now at that location.  There's no good place for me to wait for that long, and its just not within my comfort to do that.  So, I hope I can find some way to translate this into text so maybe I can do my blogging from speaking because it um I, I was able to record things that I was thinking about immediately rather than having to make my way to my computer yawn because as soon as I get out of this bed, what has already escalated in the last 6 minutes will dial all the way up.  I know it, I can feel it.  I just tried to put a little bit of my body weight on one elbow and searing, searing pain shot all the way through from my fingertips up into my back, so I know its waiting for me.  And I  I have the courage to face it now, and I hope that anyone reading just has a truly happy day and enjoys it thoroughly.  Realize that life is absolutely a gift and that if you're too busy to appreciate it, you're too busy.  You need to make a change.  Be less busy and appreciate your life.

PS  I typed this in from my morning recording exactly as I spoke it.  That's why the ums and yawns.

PSS  The article is titled :

The Fibromyalgia Spectrum - Part of the Big Picture in Understanding Fibromyalgia and if you google it, it comes up as result #2.

No big news, just August

It's Sunday.  Last week I went to my local church.  I miss being part of a church, worshiping in a group, the social aspect of it.  And the Sacrament.  But I was reminded that the location of my worship is irrelevant to my Heavenly Father.  I was reminded that the rituals are not really necessary for me to feel close, loved and comforted.  No, I don't get to receive Communion, but, I trust that He still dwells in me.  It just isn't good for me.  And more than that, it depresses me because I put myself through a lot to be there hoping to feel better about life afterwords.  Instead, left feeling chewed up and spit out.  The environment is entirely too hard for my body.  I'd like very much to become a part of some ladies social group but, without being an active parish member, which I can't do if I don't attend Mass, that isn't happening.  So, last Sunday was an extremely hard day.  And it took me most of the week to bounce up from the mood it left me in.  Not entirely sure I'm out of that yet.  I can still feel it pulling at me.  Depression sometimes feels a bit like gravity.  A natural pull downward.  Problem-solving creativity and muscular and mental effort are required to oppose it.  Those are often hard to come by for me.

At my physical a couple weeks ago, my blood pressure was so low that it alarmed my doctor.  She wanted me to come down from a drug to half the dose.  I do nearly blackout almost every time I go from low to high position.  She explained that the low blood pressure causes this orthostatic hypotension, and that likely the amitrypatline is responsible.  I've been on 25 mg of it for years at night but my previous neurologist increased me to 50 in January this year to help with migraine pain and prevention.  So, now I have a hard choice in front of me again.  I have my migraines under control again, PRAISE the LORD, but my pain is in an escalation.   I have decreased the dose back to 25mg and my pain is at the top of the charts again.  I'm not sure, of course, there's never a hard, fast guarantee, but I think that if I added back the extra 25mg, it could help with some of this pain.  It will just mean also adding back the very low blood pressure.  On the surface of it, the decision seems easy to just do what decreases my pain.  But, small activities of daily life can't be overlooked.  A movement so small as to load a single dish in the dishwasher could absolutely cause me to hit the floor if I'm not VERY careful.  It is quite hard, quite an effort to be so careful all the time.  I'm not sure yet what choice to make.  Keeping it in prayer for now on the decreased dose.  Living with the pain.

I do wish our home felt "done" the way we want it.  We haven't taken (Tim hasn't had) the time to paint all of it and to replace some of the very outdated fixtures, etc.  These things are so minor, really.  But for me, I spend my life in this house.  It would be a bit more pleasant if it felt cleaner and fresher.  We'll get there.

I no longer feel any guilt when Oscar doesn't get a walk.  He stays on guard duty in the backyard all day.  There is constant danger of a squirrel/bird invasion, and he is militant that it will not happen while he breathes.  This week, with so much rain, he actually has spent more time outside than in.  He enjoys the heck out of standing with front paws on the tree trunk making sure that darn squirrel doesn't dare come down.  And as the squirrels jump around the canopied backyard from tree to tree, he runs back and forth across our large yard, many many times daily.  The true beauty of his protection is that he does all this in silence.  Never a single bark.  So, he gets his exercise, which I'm quite grateful for.

We are going to go out for some fast food lunch and then shopping.  Also to pick up meds.   They are my migraine abortive, which I've been out of for more than a week, and have been getting by without problems.  I have introduced another chemical in the afternoons when my head starts to get tight, a half a Coke Zero with lemon juice.  The caffeine is the helper.  I'd like to get to a point where I don't rely on any chemical, but, if wishes were.... what's that saying?  Anyway, if I had a wish, I certainly wouldn't waste it on a mid-day Coke Zero need.  So, that's where I am with that.

Not feeling good about my new psychologist.  Not learning from her, not benefiting yet.  So far, I have been paying to educate her about myself, my background, my illness.  This week at the appointment, I wept about something that happened and was really fighting depression, but she could not even understand why I was so upset.  I had to explain every single step and stage of what I went through to her.  It felt excessively tiresome.  I don't think my expectations are unreasonable.  I'm just educating her about life with this.  She just needs to read my blog.  I've reached out to the support group asking for names of other psychologists who folks with chronic illness can recommend.  Neither of my doctors, my primary or my neuro, could help with that.  I have a couple to call, but they will need to take my Medicare, which is unlikely.

Still battling loneliness.  Still trying to reach out and bring new and old friends closer to me.  There's a slope involved because the loneliness breeds a vulnerability for me, which can breed anxiety, and then fear, and then depression.  I gotta nip this in the bud.  I just do.  The depression option is frankly scarier than anything I can think of facing.  I never want to do that again.

Today's gratitude is for the abundant healthy and fresh food I have easy access to.  Many, many people live in hunger or without the ability to get the nutrients they need because they can't afford foods of high quality.  I am blessed in so many ways, but my stocked refrigerator is a huge one.

Have happy days!

Listening Angel

Yesterday I went to my first water aerobics class ever.  The warm water of the indoor pool did feel fantastic, and the floating belts that made it possible to do the deep water movements were great.  I feel good this morning, in comparison to recent mornings anyway.  The difficulty in the day for me was the transit to the Y location.  The bus was more than 20 minutes late.  I got on at 11:45am.  I had already eaten lunch early, which was good thinking on my part.  Then, I proceeded to ride around Dallas until 1:25pm when I was finally dropped off at the Y.  (A bus ride for me is maybe similar to a regular person getting on a medium roller coaster.  I am very shaken up when I arrive at my destination.  To say I wasn't in good shape when I got there is the understatement this summer. ) The class started at 1pm, and I was supposed to have been picked up in an 11-11:20 window and dropped off at 12:45.  So, I rushed in and changed and hopped in the pool, a bit after 1:30.  Very much enjoyed the experience of it.  The return bus ride was due to arrive in a 2-2:20 window.  I gave myself exactly 5 minutes to strip off my suit, dry, dress, and make it back up to the lobby by 2pm.  The bus arrived 3 minutes later.  It was quite a frenzy.  Here is where I met the listening angel.  On the ride home, the driver Ron, and the other passenger, Sam, and I laughed so hard and had such fun talking about how the rides go wrong and how dispatch "gets things done" for us.  And my fibro fog was in full swing by this time.  I could only speak quite slowly.  Sam was sitting directly behind my wheelchair, which was fastened to the front passenger area of the van.  He is blind.  We'd all only been chatting for a few minutes when Sam asked what kind of accent I had.  I told him that what he was hearing was my effort to speak through the fibromyalgia fog, that my brain takes longer to think of words and pronounce them.  I don't have any real accent to my natural voice to speak of.  (For you who have never heard me during a time like this, or haven't heard anyone try to speak through fog, I pronounce every syllable distinctly, almost as if each syllable were a separate word.  I still give inflection, but it is more muted.  But ev rey thing is ve ry clear ly spo ken, with all con so nants giv en their sound.  This is something I have had to overcome feeling self-conscious about, and I have.  And then Sam said "it is so pretty.  It is one of the prettiest accents I've ever heard."  To me, that is such a high compliment.  Here is a man who gets through the world with highly tuned hearing and listening skills.  And he heard my speech not as completely difficult and effortful, which it is, but as beautiful and distinctly clear.  He said so.  It was a more lovely comment than any I've ever had about how I look to a sighted man.  It was finding the beautiful diamond in the coal mine.  My bus ride angel, reminding me that God dwells in my body.

Grateful for yesterday's adventure, although I have promised my husband not to return to that particular Y location after describing it to him.  He did not like the description AT ALL.  Grateful that I have another, hopefully cleaner and safer location to try tomorrow.  Grateful for this day and all the love I have to give and receive in it.

New analogy for fog

This week, I've got another metaphor, or maybe an analogy.  My primary doctor said it to me during my physical.  She was describing my dense breast tissue, and how screening mammograms are useless against it.  She said it was like searching for a single white balloon in a white cloud.  It was such a good analogy for me to understand why I had to have that extra ultrasound.  But, it also is an excellent analogy for fibro fog.  For any who have never had a foggy moment, here is what it is like.  My vocabulary, not entirely but almost all of it, especially all of the nouns, are captured in a white balloon.  As I wander through the cloud of fog, I search for the word I need to communicate in the world.  The word is in the white balloon, in the white fog.  I cannot find it.  The effort to even find it isn't worth the actual having it.  This is why words get made up.  Words get substituted.  I sound dumb.  But, I thought this analogy was vivid and appropriately depicted what it feels like to have the words necessary become hidden and unavailable to me.  And it conveys why I sometimes say things that are actually not words at all, or things that don't entirely make sense.

Hopefully, this will help somebody better understand their fog, or their loved one's fog.  Grateful that the balloon search in my chest did not warrant further action.  Have happy, happy days.