I've got soul but I'm not a soldier...

Yesterday was shot day. Three pens, as expected, no big deal. Except one of my pens misfired. The needle didn't even touch the skin. I pressed down, counted to ten, pulled it away, and the Humira started spraying. I put my hand over the end to catch to fluid so that it didn't spray all over the carpet. According to the Humira rep with AbbVie this is a normal mechanical failure. I explained the incident, gave them some info from the package, and as soon as they confirm with my doctor a new pen will be on the way. I have extras in the fridge, so no lapse in dosing. Still, injecting is anxiety inducing enough without equipment failure. The other problem: I noticed two lumps in my right arm pit on Thursday morning. Around 9 AM it was the size of a ping pong ball. I sat in Sus' house all day while she cleaned, unable to help her because the building pain was just too much and movement would only make it worse. By dinner time it was roughly the size of a tennis ball, and more...

On Friday I forgot my morning medications. By Friday night I was having killer acid reflux so I checked my pill box and the dose was sitting there, not taken. I took what I could that night and made sure to take the right things the next morning but this happens every time I miss a dose. It just takes a while to realize that the single missing dose means a flare that starts a few days later. I’ve only forgotten my morning meds maybe... twice in the last year. We had a super busy weekend and I'm sure it didn't help, but I had no choice. As much as I wanted to get in some treadmill time today I thought that letting my body recover would be a better use of time. 

The dermatologist said that sweating might help with the flares. Not losing weight necessarily, just being more active. For the first week I did 30 minutes on the treadmill, five times that week. I did it. I took my ass down stairs and did my treadmill time. I sometimes crashed afterward, but I did it. I bought new sports bras. I run to get my heart rate up then walk for a while, alternating as needed. I couldn't run with my old shitty sports bras. I bought the sports bras. Then there was a holiday weekend and a funeral and I didn't walk. And now I have hard spots in one arm pit and my stomach is raging. I did 20 minutes this morning. It was slow, I had to take a break, but it was 20 minutes. Now my stomach hurts and it's not getting better. But I did it. And I will try again tomorrow.

I took my second increased dose today. The last week went well. No side effects aside from minor dehydration and fatigue the day after injection. I also get really hungry the day OF injection, so Sus and I had Waffle House for breakfast. It normally bothers my stomach but the Crohn's doesn't seem to react as much at this increased dose. If you're taking Humira make sure you hydrate the day of, and the day after injection. It's incredibly dehydrating and, for me, summer in Georgia doesn't help. My current drink of choice is unsweet tea with mint tea added to make it a bit more refreshing. Dr. Wolf's nurse called and went over my labs again today. She confirmed that Dr. Wolf wanted me to continue with 120MG per week for the next eight (8) weeks, however, she reminded me that insurance has not approved this dosage yet and she doesn't want me to run out and not have any medication left. They submitted paperwork, and for the first two doses I had enough on ha...

I've got a few new diagnoses on top of the others but we're working through it. Crohn's disease, hidradenitis suppurativa, migraines, psoriasis, and polymalgia rheumatica. I'm on a 60 day taper of steroids and an experimental dosage of Humira at 80mg per week. Will update later.

Universal truth: No matter what the weather is at any given moment someone is going to dislike it. This is all well and good, but there's really no point in complaining about it because there's nothing anyone can do to change it. Georgia (where I live) went through a drought a few years ago and water reserves were at an all time low. It was hot and dry and ridiculous and the state's leadership's answer was to tell everyone to "pray for rain".  Hint: It still didn't rain, at least not until the rainy season started. So I'd like to reiterate, there's nothing you can do so why complain? Or why even worry about it? Well, there ARE reasons to worry about the weather, particularly when the weather affects your body as much as it does mine...  I've been experiencing joint pain in my right elbow for as long as I can remember. I've had cortisone injections, used ice packs, heating pads, and topical creams. Nothing has really helped. About two...

Next week I will have my 4th Cimzia appointment. At my last appointment I received the blood work from after my first round of injections. Apparently my inflammation levels started dropping after the first shots! I'm feeling generally better. My joint pain has seriously decreased, and my stomach cramps are also getting better. My joints get a little twingy when it's super cold, but it's nothing like the intense bone ache from before. As far as symptoms or side effects go, there's nothing remarkable. I'm still not on a normal sleep schedule, sometimes I have a sore throat, and my hair is a bit thinner than it was a few years ago. However, anyone who has taken any of the 5-ASA drugs knows they cause your hair to thin and I've been on them for several years. I always have some intense fatigue for about 48 hours after the injections, but that is normal. So when I go into the office next week we will determine if I continue with injections every 2 weeks or ever...

Today is Christmas. But it hasn't "felt like Christmas". Cliché but true. I made candy, I did some shopping, I got my Starbucks in the red cup, and I even did 2 Holiday themed nail art pieces. I would post pics, but I have no pics. That will be explained later. I'm on week 5 of Cimzia. So far no negative side effects. The joint pain has been reduced drastically, and  stomach cramps are less frequent. However, I'm still experiencing some pain and intermittent nausea. The problem: I'm not sleeping. Here's the thing... I'm a sleeper. 10 hours a night and sometimes naps during the day. I can sleep like a pro. My body needs it to function. During the past two weeks I've been unable to sleep at night. I follow all the tips: No caffeine after 6 pm, only one caffeinated drink per day, no daytime naps, etc. I've even been getting up early when I can. When I wake up at 9 AM, I'm sometimes not going back to sleep until 5 AM. Sleep is sporadi...

So I thought I had finished my blogging for the day, but I was wrong. I need to take a moment to complain... Anyone who has a chronic illness might be able to relate to this. Or anyone who just finds that life is difficult sometimes... I was diagnosed with Crohn's disease in 2007. I displayed symptoms LONG before that, and as a child I would often sit in the bathroom floor with my head against the cold marble of the bathtub after every meal just waiting for the nausea to pass. Since my diagnosis and treatment life has been different. Sometimes it's easier, sometimes it's not. But I can never really forget that I'm living with a disease because most of my life is dictated by my symptoms. I've said this in other blog posts, but in case anyone new is reading: I have fistulizing Crohn's. I have had 2 fistulectomies to date. I am currently being treated with Cimzia. My primary symptoms (currently) are nausea, stomach cramps, joint pain, and fatigue. I am on disab...

I know that I said I would post more, but whatever, I'm a liar. I'll post when I feel like it. This may or may not be frequently. Since I started seeing Dr. Wolf I've gone through several medication changes. A few weeks ago I started prepping to participate in a drug study. The drug is Cimzia, and it's already FDA approved, but Dr. Wolf is doing research to optimize dosing of the drug. In order to qualify I had to go through a series of tests: Blood work, TB test, chest X-ray, C-Dif test, etc. Fortunately all of the tests results were what they were looking for, and I'm a prime candidate for the study. It seems the other medications have helped my symptoms, but I still have lingering issues with joint pain, stomach cramps, and nausea on a daily basis. The goal is to make these symptoms minimal. So, last Monday I had my first Cimzia injections. The nurse injected two 200 ml syringes into my stomach. I thought that it might hurt, but it was relatively painless. ...