Thursday, April 19, 2018

What's in a Name?

I'm slowly learning what it truly means to have Sjogren's. I've found after the relief of giving your illness a name comes the weariness of continuing to live with the disease. On one hand, it's fantastic to know doctors will no longer treat you like you're crazy for bringing up seemingly totally unrelated and random problems. No longer will doctors tell me my fatigue, pain, brain fog, joint swelling, etc are all from "getting older." I was beginning to wonder if this was some conspiracy that all 40+ people knew about, except me. "Let's not tell the younger people that your body falls apart at age 40, and let them think something is very wrong with them."

To all of you, this probably seems a normal progression: happy to know what is going on, even though the symptoms are still there. And that is a normal path, however in my mind I had dodged the worst.

Last summer I finally received a diagnosis from a wonderful rheumatologist who didn't think was was crazy, although the jury is still out about my primary doctor. It felt then, and still does some days, like he is humoring me. At any rate, he ran the initial screening tests that shockingly came back abnormal and he referred me to a rheumatologist - not the one I chose, but told me to see one.

After a rough summer in 2017 with a myriad of symptoms and then starting Plaquenil, which at the time felt worse than Sjogren's, I leveled out and adapted to the medication. I have no side effects from the Plaquenil anymore, and it clearly is having some positive effects:

  • The anemia is gone, mostly. One count is still low, but it's apparently stuck there. Nevertheless, I'm no longer so exhausted I can't even speak coherently. That was getting ridiculous. Words were hard.
  • My angular chelitis, that I'd had for YEARS, is completely gone! No thanks to my previous primary doctor who assured me it was due to "nighttime drool." I'm serious. The answers she gave me were quite often ridiculous. I should have known something was up besides drool, especially when prednisone for my back would temporarily heal it up the sores that nothing else could touch.
  • I'm not using eye drops daily anymore, nor do I feel like I have mighty boulders in my eyes. 

This was all thanks to the wonders of a DMARD and a diagnosis that allowed me to take the medication. It's not a magical, cure-all medication though. My skin is basically as dry as ever. I'm still living on the edge of exhaustion all the time, even if it beats the low-red-cell-count type of exhaustion. Apparently, I can expect this lovely autoimmune exhaustion to continue indefinitely. That's ok though. Exhaustion and I are old friends. I've been sick for years, I just never could get a doctor to take me seriously until last year.

My digestion has even been working better, or I've finally learned what not to eat with gastroparesis, rapid transit, and IBS-c (yes, I'm serious, all three at once). If food gets through my stomach, my intestines sail it through so fast that there is no stopping. Dump a few nutrients on the way by and go go go. Unless of course I've eaten one of the foods that triggers the IBS, then let's sit and cause a road block. That will be fun until it comes time for rapid transit again. Or maybe we can try a stomach roadblock and intestinal roadblock. Let's just feel crummy everywhere.

Well, you get the picture.  Except that scenario hasn't been happening as much lately. Everyone is playing nicer. Digestion has been happier overall; exhaustion has been manageable; mouth sores are a thing of the past; my brain even functions at a usable speed.

In early 2018, I finally felt like I had this Sjogren's thing down. I could do this, easy peasy. In my mind I'm thinking, "I'm all set up. I've got a diagnosis. I've got a medication that looks to be slowing the disease progression. Life is good."  I mean, I know it's an autoimmune connective tissue disease. I know it's just as harmful as lupus, et al.  But, but, I'm doing good. I feel better than in years, or at least in two years. Well, one caveat: exercise is not my friend anymore. I feel overwhelmingly sick after just a little workout. No worries though. I've read that happens with Sjogren's, and I only need to adjust my exercise routines to be shorter, less exuberant. The key is to keep moving. Again, I can do this.

This is where the cliche about pride going before a fall is fairly accurate.

It started in late February or early March with just my pinky fingers aching, or maybe even with my toes aching too. Honestly, it was hard to differentiate the aches from my peripheral neuropathy, which is doing significantly better too. Possibly it actually started back in late 2017 with the random bouts of interstitial cystitis, because that was certainly noticeable. However the IC was chalked up to more Sjogren's symptoms / complications that I didn't realize we're part of this gig. At that point I was still learning which symptoms went with Sjogren's and which symptoms required additional medical advice.

Then I was tired. Maybe more tired than normal tired. Or am I so accustomed to being tired that I can't even tell tired apart anymore? That's a valid concern. Oh, then my words started slowly vanishing again. leaving me not very intelligent sounding after 6-7pm. And let's be honest here. I don't get up until somewhere between 9-10 am on a daily basis. Getting up at or before 8 am is considered freakishly early for me.  And I'm not a late night person either. I simply require that much rest to function. Except, even that became not enough rest to function.

I have this everywhere around the house and in my purse. It's a skin saver for me.
Next I noticed my finger joints were really getting achy. This was definitely more than normal, probably. Again, the reminders from previous doctors about getting older reverberated in my head. Then I noticed how much more dry mouth had been, and I'm using the eye drops more frequently. Still so tired. I started ordering from Prime Pantry again so I could skip the local stores as often as possible. It takes so much energy.

Eventually my hands passed from aching to the "hey, these things really hurt most of the time." It hurt to use my hands, hurt to touch the finger joints, hurt to sit perfectly still. It encompassed every finger, and usually two joints per finger. My toes felt the same way. One day I noticed my fingers looked a bit pudgier than normal, maybe. Fred and Amber called it swollen, and could even point out the areas where my hands were this "swollen" thing. And, oh look, my toes are swollen too causing many of my cute shoes to fit oddly.

After being talked into messaging my rheumatologist through the patient portal (she really is fantastic about answering promptly), I was surprised to be called in immediately. She wanted to check my blood work again and take X-rays to look for the dreaded rheumatoid arthritis. That day I was prescribed a short four-day taper of prednisone to help with the joints. I'm a type 2 diabetic on a very low dose of medication, which is never enough to combat prednisone blood sugar highs. I tend to avoid prednisone like the plague and argue with my doctors about taking prednisone. In this case,  I figured this little taper would be fine, and it mostly was. After a week of waiting for results, I was given the all clear, or the RA clear. No way I'm clear of Sjogren's.

At first, I was happy to be finished with the prednisone and clear of the RA, because it meant this was all no big deal. Nothing new. Same old Sjogren's. Except, and you knew there was an except, right?  I was called back in for an anti inflammatory injection AND started on an 18-day taper of prednisone. I believe my reaction was "Say what now?"

Admittedly, the four-day wasn't terribly effective. It started helping the joint pain on day two, and pain was ramping back up before I even took the day four dose. Still, what? In my mind a longer taper of prednisone could not possibly have been necessary. I might easily agree to another six-day, but 18 days of prednisone? I'd never attempted anything of that nature.

Such a soothing feeling for my eyes.

What I didn't understand fully, was when the doctor says, "Your blood work and X-rays are clear for RA, it's a major Sjogren's flare," they mean to say "It's not a new disease, it's the same one being active and progressing inside your body. Welcome to autoimmune diseases."

I take my DMARD like a good little Sjogren's patient, and therefore was completely blindsided by this concept. I'm used to Amber's flares with her connective tissue disease and dysautonomia. We figure out the trigger and help her get back to base line. No long-term harm. I keep forgetting to add that little autoimmune part to my flares.

Apparently when I'm flaring my immune system is going crazy on various parts of my body. For some reason, this thought makes a line from Avengers: Age of Ultron continually pop into my head "Oh, I'm decrypting nuclear codes and you don't want me to." Instead, my rogue immune system is saying "I'm attacking vital organs and you don't want me to. Come and get me."

So now I'm taking prednisone to kick my immune system to the side for a while. To show it who's the boss. I'm pretty sure I'm not the boss, but someone besides my rogue immune system needs to be the boss. Which means I'm pretty sure every germ in the city will come winging my way. I am horrible at fighting off germs in the first place, and now I'm telling my immune system to step aside for a few days. Take a breather and think about its behavior.

Yes my blood sugar went crazy the first day. My primary doctor is not going to worry about highs to a certain point. I have to manage with my paultry daily pill and diet. I'm pretty sure I could eat nothing all day and drink just water and still hit 160 easily. That means this diet management plan isn't a great plan. It's maybe 12% of a decent plan. It... it's a bad plan. But randomly adjusting meds for prednisone doses that change every 3 days is also a bad plan. Which means I'm hungry and craving food because prednisone makes me crave carbs.  And it makes me hyper. So sleeping is off the table. Oh, but I was exhausted. Now I'm wired and exhausted, but much more productive.

And this is not even all the fun. The prednisone might not be enough to reset my immune system for a while and I don't know what triggered the flare. It could be the freaky weather. It could be diet, which was working so well in other respects. All I can do is wait and hope I don't need more prednisone or long term low doses, because that is a total diabetic nightmare and will require medication change. I cannot live on protein and lettuce, since the fruits / veggies that don't raise my blood sugar are the ones my intestines love to hate the most.

The end result is: I'm learning what it honestly means to have Sjogren's. The relief in having a name for all my odd symptoms is gone. I don't like this name. Though I am still grateful for the name and the treatment options it brings. I just wish Sjogren's only meant taking my Plaquenil twice a day and dealing with the tiredness.

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