Darkest days
I think I experienced probably the darkest days I’ve ever dealt with in regards to this disease. I’d been getting progressively worst over the last 12 weeks, and it came to a peak four weekends ago. The pain and stiffness in my knees and ankles was so severe, that I could barely walk. My husband had to help get me out of bed, and off the couch. It was very scary, and I went through the gamut of emotions during those days. Not knowing whether that was to be my future, whether I was going to be able to work any longer, because I knew that if I continued as I was, there was no way I would be able to go work. I was taking painkillers and an anti-inflammatory, and still getting very little to no relief.
My next rheumy appointment was set for another week after this really bad phase started. I had been calling daily for weeks, trying to get in. If you recall, I’d already gone through 3 rounds of steroids, and was still getting worse. The first day I woke up and absolutely couldn’t walk, I called and demanded to be seen, as there was no way I would be able to make it another week. Luckily, they were able to get me in that very day. My doctor put me on another steroid immediately, this time long term, instead of just a pack, and changed my biologic injection from Humira to Simponi. I still had four days before my next injection was due, so even though I started the steroid, I still suffered greatly for the next four days. By then I was counting down the hours between painkillers and anti-inflammatories, and taking them more frequently than was prescribed.
On the fourth day, I woke up and immediately gave myself the injection. My rheumy had said that it would take a couple of months for it to really begin to help me, as it needs to build in my system. So, I still took my anti-inflammatory, and painkiller. By the afternoon, I was getting up off the couch on my own. The pain in my knees and ankles wasn’t as severe, and I was able to get up and move around. I cried (for the hundredth time that weekend) when I realized that my flare up was finally ending.
Since then…it’s been four weeks, and I’m doing okay. The monsoon season upon us, I have been pretty stiff. My injection is due in the next couple of days, so I’m definitely feeling it, but it’s still so much better than it was at its worst. I’ll take this over that any day.
Arthritis Walk
During this time frame, I made it to Santa Monica and did the arthritis walk. Thanks to the generosity of my family, friends, coworkers and a bake sale at work, not only did I meet my goal of $500, I exceeded it and raised $722. NICE!! I had family and friends join me for the walk, my nieces, nephew, my dearest friend from my high school days, and we had fun walking the short one mile walk. I’m so pleased I was able to do it, and I’m looking forward to doing it again!
My support team:
Love you guys!!
Food Panel…
In case anyone is wondering about the results of the food panels I had done, I’m disappointed (or not) to say that I am allergic to….nothing. Everything came back normal. I was upset, because I wanted it to be my miracle answer. Don’t eat wheat; it’s what’s causing your symptoms. But that wasn’t the case. However, even though I’m not “allergic” per se, to anything, I know certain foods still cause me to flare up. A bowl of ice cream, or Chinese food, or spaghetti and sauce, will have me hurting like no tomorrow. For now, I’m continuing on my anti-inflammatory diet as well as possible, until I feel better and can add some of the other foods in to see how they affect.
Starvin’ Marvin’
I say as well as possible, because now that I’m on the steroids, I’m STARVING! Ugh. I’ve gained 8 lbs in the last month. I’m trying very hard not to eat too much, but it’s hard when you feel like you can’t help yourself. Must try harder. Hopefully with next update, I can report a loss. After my shot, I hope to begin walking in the evenings again. Let’s hope I’m able to.
So, I think I’m caught up!! Now that I’m better, I will try to update more regularly.
Take of yourselves!!
Liz
Hi Liz,
I’m so sorry to hear about the pain and misery you’ve been going through. It’s awful and terrible and frightening and feels like nobody understands, I know. But I am so GLAD to hear that the new treatments are working for you! Hopefully the Simponi will do the trick and you’ll be able to get off the steroids. I never thought I’d be able to get off and stay off prednisone for more than a month at a time, but as of today I’ve been off it for 10 months! This disease is so strange and wacko that anything can happen. I hope that good things keep happening for you and that you will finally get some stability.
Keep writing, love your blog! And, awesome job with the arthritis walk!!
Hi Angela,
Thanks for the comment! Sorry it’s taken me so long to get back to you…I don’t know what’s wrong with me sometimes. I just don’t feel like being social. bleh. Is this common?
thanks for the words of encouragement and hope! I took my last shot almost three weeks ago, and I’m still feeling okay. Just a few little aches here and there, but nothing major. It’s great!
I hope you’re doing well too! take care of you! Liz
DANG IT LIZ ! I hate that you suffer so much. Dark days is right. Geesh.
I wish that I could help you. That I knew some super great trick to it.
I hope these meds keep building in your system and that soon you’ll be running around like crazy.
Much loves my friend.
i too hate to read of you suffering! i wish there was something, anything that i could say, do or conjure up to help you…. but, since i’m here and you’re there, please just know that i love you and am sending good thoughts, healing vibes and all of the positive energy i can muster!!!! i hope the new meds are continuing to work! *crosses everything*
thank you, sweetness!! just your kind words make me feel better. I’m happy that I have so many good friends whom I love, even when they’re what seems a million miles away!
*hugs*
I’m doing better, so let’s keep those fingers crossed that it continues!! And we need to chat soon. LJ?
Hi Liz, You are in my thoughts and prayers. If I can help in any way let me know. Love you, Sylvia (your cousin).
Hi Prima!!
Thanks for stopping by. 🙂 And thank you for your prayers. I will take all I can get! You never know when you’re going to need them. Right now, I’m doing much better, but you never know what’s around the corner. Hopefully more healthy and happy days.
I hope you are doing well!! It’s good to be in touch with you!! Love you too!
Liz
I love you my friend – Kimi
thank you Kimi!! that alone makes me feel TONS better!!! I love you too, friend!!