A long and serious post with much over-sharing

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Ugh, it’s been a tough week.  It started last Sunday when I woke up feeling a little queasy, head-achy, weak.  I assumed I was getting sick and sure enough felt worse Monday.  And then Tuesday, felt awful. I started to suspect that maybe I was having a “flare” and not necessarily any sort of bug.  Why does this happen? I try everything to figure it out but it doesn’t make sense.  I’m not eating anything different, I’m still taking probiotics and such, I just feel terrible.

What is terrible? What exactly is a flare? I’ll tell you exactly what it is like, even though I doubt you really want to know.  I woke up yesterday feeling like I could throw up.  My stomach feels like acid is sloshing around, and I decide to go ahead and eat breakfast.  I try to get ready for work but an hour after I eat my stomach starts cramping, those awful painful cramps that you get when you are going to be spending some time on the toilet. I know, tmi and yuck.  But it has happened every time I eat for the past week.  It’s wearing me out and I feel terrible.  Once I did make it to work, I spent a lot of time pretending to feel okay, to joke around, smile, be positive, get my work done.  But I am distracted by the tremendous pain in my hands, my hips, wrists, lower back.  Everything aches and hurts and all I can think about it curling up in bed with a rice heat bag.  I take a chance and eat some lunch but by 2:00 my stomach is cramping again, hard and painful.  I head home and start to feel a little better in the car and stupidly decide to swing by Joann’s quickly to grab some supplies for a craft project this weekend. The cramps hit and I’m stuck in the nasty bathroom at Joann’s for 30 minutes.  When I finally got home I curled up on the couch with a heat bag and fell asleep.  Craig called at 5, having figured out I wasn’t a work and picked up the kids.

When they got home I felt my mood lift a little and I headed out to great them.  It isn’t that there is less pain, but I think about the pain less when the kids are around.  We spent the evening gardening and buying plants and having a great time outside in the sprinklers and didn’t come in for dinner until after 8.  It was a fabulous evening and a welcome respite from feeling like crap.  When I am outside and gardening, the tension and pain seem to melt away.  Unfortunately, I’m pretty sure it makes me ache a lot more once I back to reality inside.

I had a giant salad for dinner, got the kids in bed at 9:30, read in bed for awhile with a heat pack on, and then spent another 30 minutes stuck in the bathroom. By 11:00 I was hurting everywhere, and exhausted, and starting to fret that I would not feel better ever again, my anxiety disorder trigger is feeling ill. My mouth is dry as can be and my eyes itch and burn.  They are like this all the time, I just notice it more when I’m trying to fall asleep or working at the computer.  It took at least an hour to finally succumb to sleep.

At night I dreamt that my tumor grew back.  There is no respite from the flare, even in my dreams.

~

There’s a “flare” for you.  I’ve been told it has a lot to do with inflammation, with my body overreacting to some stimulus and that is why everything hurts so much.  Depending on the doctor, I been diagnosed with so many different auto-immune problems that it is hard to know which to claim.  Surely I don’t have them all, but weeks like this remind me that I’m really not normal like I prefer to believe. I looked at my bedside drawer last night and saw the huge pile of red Target pill bottles, and $100 anti-inflammatory eye drops and then thought about the special mouth washes and supplements and vitamins and probiotic drinks… it takes a lot to keep me going. And then these weeks happen and it seems like none of it helps at all. It was humbling and depressing.

I saw my eye doctor a few weeks ago and he again strongly suggested I need to see a rheumatologist.  He said I had the driest, most irritated eyes he has seen in awhile and gave me the names of some doctors he would recommend.  He says he sees and awful lot of young women with auto-immune issues and that they get the most relief when they are treated holistically.

I feel stuck right now, I know if I go to my family practice doctor I will be sent to the gastroenterologist and he will want to do scopes.  Scopes suck, I’ve had too many of them for a 30 year old. I don’t really like my GI doctor, he seems to think Nexium cures all ills.  I believe more in the power of probiotics than in Nexium and I really am not up for any more testing.  So that is out.

And going to a rheumatologist requires finding a new doctor, and filling out those forms that make me feel like a total loser, and it’s just an ordeal and I don’t have the energy to do it.  That’s why I still haven’t, seven months after it was first suggested to me. Does it really matter if I know exactly which autoimmune problems I have and which I don’t? I don’t think it does.  It’s hard to think it would make any difference.  I’m all kinds of messed up, and don’t really believe there is a doctor out there who can figure out the puzzle for me.

So I do what I’ve always done, continue to be optimistic that I will wake up one day feeling normal.  It’s happened before, it ends as suddenly as it begins sometimes.  The joint pain and aches never really go away, and neither do the eye and mouth problems, but they can fade to the background enough that life feels normal.  March and April were fantastic, I’ve never been happier.

I’ll just push on for now, finding the joy in life everywhere I can, but still feeling angry and sad that this burden of illness is one I will carry for my entire life.  Some weeks it feels heavier than others, and during weeks like this I think it just might crush me.

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5 responses »

  1. Elizabeth, I’m so sorry you’re having to go through this again. You will be in my prayers! Let me know if there’s anything I can do to help you.

      • That would be wonderful. Are you guys free in the next few weeks? If you are feeling up to it. We would love to have you over sometime for a playdate.

      • The next few weeks are filled with tying up loose ends at work and a much needed family vacation. But come June, we are WIDE open. Would LOVE to come see you and meet your children.

  2. My brother in law has been going through this a lot. He just had his appendix taken out because it was inflammed. He has stomach and joint pain. They are thinking it’s A)Lyme disease since he was bit by a tick 4 years ago B)Gluten C)Lactose D)Black Mold. Since they found it in their house.

    Sorry you’re feeling so crummy.

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