A Life With AutoImmune Disease

17 years ago I was diagnosed with Rheumatoid Arthritis and Fibromyalgia. It's been a road of ups and downs, good days and bad days. In the last few months, the bad days have gotten worse and new symptoms have come. It feels as if I'm deteriorating in some ways. A couple of months ago, I had a real to real talk with my doctor. And we are starting the testing process again. Is it my RA and Fibro worsing or is it something else? For those that struggle with autoimmune diseases, you know this journey, and you can relate. Today, I share a look into a few of those bad days, recent bad days, and the feelings that come along with them.

Day 1: Today I chose not to shower so I had the energy to do laundry......

Exhausted. Four days into the week and I still can't regain my energy. Mentally my mind is caught somewhere between clouds and screaming to get out and do things. My body however, fully toast, done, weakened, spent.

Last night I started a new medication that should help qualm some of the pain. Combined with my other medications it made me feel three sheets to the wind. Thankfully my husband was amazingly supportive and joyfully cooked me a yummy quesidilla for a late night dinner. Because I couldn't seem to pull my common sense together enough to cook myself my own meal.

This morning I slept in until ten am, four hours past my normal waking time. And I awoke with what felt like a hangover, headache and all over bodyaches. Onward with the day, downstairs I go for coffee to find my husband cooking up chocolate chip pancakes, which was one of my dazed and confused requests from the night before. Bless him and bless him being home right here right now. I can't help but think that God may have planned his layoff from work perfectly timed for this season I'm starting into. The coffee and chocolate chip pancakes helped tremendously.

I set just two goals for myself today: laundry and catch up on my women's bible study workbook before tonight's group session. I'm not sure I could handle too much else on my plate today. And partial because of the heaping pile of laundry my husband had to carry down for me. I had been dropping that to the bottom of the totem pole for weeks so it had literally consumed the back half of my walk in closet. Yikes!

Laundry started, and feeling accomplished just a bit, but now drained from that simple task for most. I headed up to my bedroom to prop myself in our bed. Because I'm one of those awesome, weird folks with too many pillows on the bed I had a great little fort to nestle into while I mustered up some more energy to start my next task. And who knew working on bible study could be so tiring or is that just me. I mean these days I find brushing my teeth freaking tiring.

None of this comes easy to me. All of it a complete revolt against my personality type. I'm a doer, a hustler, a busy bee. I'm usually energetic, full of life, passionate, go-getter type. This is lethargic, dulling. My mind wanders with everything I want to do, to accomplish. It's constantly analyzing, looking for ways to get things done while I'm in the state, the situation I'm in. Sitting and waiting. Resting, Patience, not my virtue in this type of conundrum. Yeah I guess I can catch up on tv shows and movies on Netflix, Hulu, and Amazon Prime. And I can paint on the goodish days. But then what? I'm not usually someone that gets bored, but that's because I'm always busy. Now I'm not allowed to be busy...

This will be a journey. A full journey. I don't know how long it'll be, walking into this submitting to the process. Well trying darn hard, there is definitely some resistance here from my personality type. Trying to have an open mind and ride this out. So far I've got an MRI scheduled and an appointment scheduled to see the rheumatologist in months from now. You know how long it takes to get in with those. And more specialist appointments to come yet. But each day, I'll start where I am.

Day 2: Awakening with my head thumping again. Today also coming with nausea. But comfortingly, my dog laying tightly against me. She's been by my side most days since this has been worsening. My little furry caretaker.

Among the thumping, thoughts of inadequacy float through my mind. I don't feel like myself. It makes me feel unreliable, out of sorts, and honestly just wanting to be left alone. Typically, I'm someone that holds her word but now I'm feeling erractic. I don't know if I'll awake well or unwell. I'm feeling spaced out and rather drunk feeling, and oh so drained of all energy. What a contrast for me to face.

Last night at bible study, some of the girls prayed over me. They prayed for me to have the will to be still and rest, to be patient as I go through this process. It was beautiful. I know that even as I step back into what seems like a lonely place, I'm not alone on this walk. Jesus is with me. And I also have support and comfort from my friends and family. Some days I will need solitude and peace more than others and others I need comfort and to be surrounded love. But I may not know these days until they arrive. It'll be some learning curves. There's so much unknown right now and I have to be okay with that. This is a season, it's not forever. It's temporary and it will pass.

My husband is driving me into the store to work today because my reaction times are slow today making me (well both of us) weary to let me drive my self. Darn new medication. Losing some of that independence isn't as worrysome for me as it being a burden for others that bothers me though. I struggled to take the simple wooden open sign outside. Weak girl here. Ha, that must have been a sight to see for peeps watching me hobble outside with it! Anyways, I'm proud of myself for getting it done! And in reality I'm not much taller than the sign. So where's my trophy folks??

So, I also have this body tempeture regulation issue thing going on. I go from hot to cold to hot to cold in a matter of minutes. That's fun. But layered looks are quickly becoming a signature style for me so at least I have that going!

Highlight of my day - the Philly Pretzel Factory yummy pretzel my husband dropped off for me. Eating has also been something that I've kind of lost an interest in doing. With being in pain 95% of the time my appetite has dwindled quite a bit. So my hubby has been pretty good about making sure I've got my fave snacks happening around me to keep me tempted. He's so freaking awesome.

Day 3: This morning I awoke sick, running to the bathroom feeling clammy all over, I threw my face towards the toilet. Nothing came out though and I just got light-headed followed by sharp pains in my abdomen. I felt terrified. I yelled for my husband for fear I might pass out. He came in and sat with me. I rolled over to lay flat on the floor so that I could look up towards our skylight. So thankful I felt for that in that moment, the soft clouds rolling by calming me.

The fun part of all of this is that I just don't know when or where I feel sick. Most evenings I'm in ridiculous pain, enegry levels mostly at a 1-2, a 3 on good days. The other night my husband came home to find me curled up in bed crying because the pain was so severe. Somehow I made it through but believe me it must have been from the grace of God because in my mind I was screaming. Thankfully I awoke the next morning with just residule pains. Is this a test, maybe. Is this part of my journey, surely. Do I understand it, not at all. But I will someday, maybe. Does this make me stronger in some way, I believe it does. Do I like it, absolutely not. Will I continue to hold on, yep. And learn to adjust my life to it, there is no other choice. Am I the only one going through things like this, not at all. And so I share this story to connect and hopefully to inspire that we're not alone and that we can survive it and that new days come.