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. 

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.

It seems to be working. Some of the spots have flattened out and stopped draining, others are lightening in color. I take my next dose on Thursday. Reminder: I am on Humira for Crohn's Disease, Hidradenitis Suppurativa, psoriasis, and polymyalgia rheumatica.

Well, my GI got all of my blood work and all of the stool samples back. Things are not great. My CRP is elevated about four (4) times the normal limit, and my white blood cell count is elevated. My adalim levels, which measure how much Humira is in your blood stream, are STILL too low to be considered therapeutic, even at 80MG per week. The weird thing is I don't seem to be building an immunity to the drug, so that's good news. No C Diff or anything to deal with right now. My GI  is fantastic. He is an excellent doctor. He's a research physician, and he's willing to try things that other doctors can't, or won't. So he wants me to try 120MG of Humira per week, for the next eight (8) weeks to see if we can get my levels up to therapeutic. I'm taking my first increased dose today. I finished the doxycylcine and I'm still on clavamox, but the HS flare continues. It's not AS bad as it was a few weeks ago, the drainage has decreased a bit, but my arm...

My dermatologist and my GI agreed that because my adalim levels were low and I wasn't building a tolerance to the Humira we should try dosing at 80MG per week. That's two pens/syringes every seven days. I was worried about the increased dosage so I did a little of my own research and I spoke to a friend who is a scientist. There were no increased risks and my body was tolerating the drug well already. It seemed that a higher dosage resulted in an increased chance of remission for most people. So we did it. A whole 3 months at 80MG per week. I experienced no unusual side effects. I try to hydrate on injection days and I seem to be hungrier than usual, but my intestines seem to tolerate fiber a little bit better so I tried healthier snacks and the occasional salad. I don't know how much is the Humira and how much is the steroids but things seemed okay for quite a while. Then, a few weeks ago, I started having an HS flare. Hidradenitis suppurativa is an unpredictable dis...

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...