Saturday, January 14, 2017

Not thinking...

So, well, the rheumatology visit did not go they way I thought it would.  No need to worry about rheumatoid arthritis, as was the thought.  No, well, I tested positive for Sjogren's Syndrome.  I have been actively trying to avoid thinking about it.

My GP differs with the rheumatologist in that she thinks I've been having a flare and is the reason for so much elevated pain.  Frankly, I agree with my GP.  But whilst she thinks that, she is not going to treat me with the super drugs at the moment.  Since I am not really wanting to take anything like that, I am okay with it.

A couple of weeks ago, we had a front come through that made it feel as if I hadn't been taking Celebrex for eons.  I didn't know arthritis could be that bad and by the time I saw the rheumatologist, I was pretty miserable.  She wanted me to see a pain specialist.  My GP also wanted that.  But I cannot afford it, so I guess I could say that it was okay that the only female pain management specialist will not take me on as a patient since I have dysautonomia.  The I-can't-afford-it-part-of-me was relieved.  The I-can't-believe-how-much-I-hurt part of me was devastated at the news.  I wept and wept and wept.

Later, I did some reading on lower back pain, where my arthritis is worst, and was convicted on how I should be stretching.  I knew that, but I did not know that stretching my hamstrings, specifically, would help.  So, I am trying to do so.  But stretching hurts worse than the arthritis.

For many years, I have gone through this cycle:  become convicted about stretching, try to stretch, stretch in tiny, tiny increments, become consumed by the pain, and stop trying to stretch.  Months pass by and then I start trying to stretch all over again.  Then I quit, a whimpering baby.

Today, I bent over too much and have been regretting every moment since.  I recognize this pain and think it will eventually go away.  But it is discouraging.

What I have been trying to do is stretch my hamstrings every time I take Amos outside to tend to his business, using the back steps.  I whimper and whine and shout colorful metaphors and am deeply, deeply thankful when Amos tends his business rather quickly.  No lallygagging allowed when I'm torturing myself!

The other thing I have been doing is high, high, high heat.  I have been sleeping and sitting against a heating pad.  My right hip, which had never bothered me this badly, has been just awful, so part of the time I have the heating pad draped across it as I lie on my left side and then use a weighted blanket to hold the heating pad in place as I sleep.  The heat has been my most bestest of friends.  And I am, most thankfully, better than I was a couple of weeks ago.

Of course, the other help I've had is that I agreed to start back on increasing the gabapentin.  I am now 30 pounds heavier since starting that medication and I am really worried what increasing the dose might do weight wise, but I swear that the neuropathic pain is already slightly better after just four days.  I went from 600 mg to 900 mg.  She'd like me at least to 1,200 mg, where I abandoned the help in the hopes that if I lowered back down or got off of it I would lose the weight.  All I did was stop gaining for a short while.  SIGH.

One of the things I have struggled with the most is just how much pain I've had in my hands.  I am used to them bothering me. I am not used to them crippling me.  And, as far as the x-rays showed, the pain in my hands is all neuropathic.  Most likely due to the Sjogren's.

So, here's the concerning part:  about the same time I started having trouble swallowing, I also started having trouble becoming horse.  If I talk for a long while, the hoarseness becomes a problem.  Eventually, it is really difficult to do so.  I have a terribly dry mouth, so much so that even drinking water does not help.  And I get these dry spells in my throat that set me to coughing.  It is as if, all of a sudden, someone has wiped dry the back of my throat.  Often, the coughing tips over into an asthma attack.  SIGH. In any case, the dryness is most likely the Sjogren's, or so my GP believes.  The hoarseness, too.  Maybe.

But then there is the inflammation in my thyroid, the nodules in my thyroid, and the pain in my neck. The problem swallowing could be because of my thyroid.  Or the Sjogren's.  Or dysautonomia.  Or.....

There are so many troubling things and, frankly, I am not up for any of this.  I have been in such a messy place all fall.  Ever since hearing there was no help for the swallowing problem, that it was a new normal for me, I have feel defeated medically.  Basically, being overwhelmed with the whole chronic and incurable part of my life.  How do I deal with that??

Add chronic pain to my already overfilled plate and ... well ... I suddenly understand why the folk with dysautonomia whose blogs I liked dropped off.  Why they disappeared.  It's hard to write when your brain is so foggy that you are confused much of the time.  It's disheartening to write when writing has become so difficult when it used to be as easy as breathing.  It's depressing to write when what you have to say—aside from new recipes—is about suffering ... and you are massively failing at being a suffering saint.  SIGH.

Of course, it is also difficult to write when you are spending much of your mental energy not thinking about Sjogren's and what that might mean for you.  Not thinking.  Enduring.  Holding my Fluffernutter.  And making tasty food like a roasted turkey avocado melt on sun-dried tomato basil bread.

Wednesday, January 04, 2017

Awash in pain...

To be blunt, I have been awash in pain.  I do find it a bit odd that my best days, physically, in the past few months were when my parents were here for their visit.  Of course, I cooked and cleaned and laundered myself from deep fatigue into total exhaustion, but this is more.

We just had some sort of front blow through here that absolutely felled me.  There was a front last week I found difficult to endure, but this one was 1,000 times worse.  Since October, I have had days where it felt as if I am not taking my Celebrex.  I check and double check to make sure that I remembered to fill the daily medication boxes with it. I see that little yellow and white pill and think, Why do I hurt so badly?  I have wondered oft and on how it could be that my arthritis could be so much worse.  I am still conflicted about that.  Is it worse, or is it just the dysautonomia magnifcation factor?  You know, like I have such an exaggerated response when my blood sugar starts to drop rather than when it gets to a "normal" low level.

My hands are my nemesis, feeling swollen even though they do no look swollen to me at all.  Stiff and sore and difficult to bend.  My lower back is my arch enemy, the first spot of arthritis and my worst site.  My right hip hates me.  My knees mock me.

With the abdominal pain, I am felled by overwhelming waves of it and, eventually, it goes away.  By that I mean, even if I have it daily (wee hours of the morning-ly), I still have big swaths of the day that are not filled with writhing in my midsection.  And when I have a migraine, even though I doubt being able to survive it, it does end. The pain ends.  Nausea is not pain, but even in the throes of it, struggling to get to the next second, some part of me knows that it will end. The bout will be over.  I will be nausea free again, if only for a few hours.

The nerve pain is a different penny.  It oft lasts days on end.  So, for example, I've had my internal electric cattle prod poking my right thigh for the past few days.  Fun times.  I have been battling nerve pain every day, but in spates ... or at least in ways I can endure it, though, I think, perhaps, if you asked Becky, she would tell you that I have become more and more and more grumpy and quick to have my feelings hurt.  Poor Becky.

But, oh my, I have struggled mightily with the stiff, sore, achey bits of me. The never-ending stiff, sore, achey bits of me.  If you look up the word "achey," you will see it means continuous dull pain.  UGH.  Its that continuous part that gets me.  It does get worse and then less worse, but the pain never goes away.  I am sued to being stiff, sore, and achey when I've sat for too long or getting out of bed in the morning, but this is brutal.

I am awash in pain.
And losing perspective.

Tomorrow, I see the rheumatologist.  I honestly do not have much hope for pain relief, given the medication options I know about, but maybe ... just maybe ... there is a way.  SIGH.