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

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. 

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...

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...

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. ...

So I haven't written anything about the bane of my existence in quite a while; Oh Crohn's Disease, how I wish I could forget you... In the past few months my Crohn's symptoms have been limited to stomach/intestinal cramps, nausea, dizziness, and fatigue. Despite sleeping 16 hours a day sometimes, and not leaving my couch for days at a time, I would say this is an improvement. It's been a year since my last fistula was removed and I don't have another one forming (that I know of). I've been living with this set of symptoms long enough that I've sort of gotten used to them. (Not that one can get used to swirling carpet patterns or asking your friends to take you home because of sudden onset sickness...) However, I know it could get better. In the past two or three weeks however the phantom joint pain has returned. I say phantom because it disappears and reappears in different places with no warning. Last summer my left hip was a huge problem. It would sw...