Hello dear readers,
It’s been a week! This month I have definitely been slacking with the blog posts, which is a bummer because I have even planned my posts for the month, but unfortunately I didn’t really plan ahead at looking at my energy levels- which lately feels non-existent!
I have decided to try and power through my withdrawal symptoms and see if I could manage. The Humira is starting to take an effect, but its a slow effect because my body is still really reliant on prednisone. I almost reconsidered one day because there was blood in my stool again and I had diarrhea, but for the past three days I haven’t had that problem anymore, so fingers crossed.
BUT prednisone likes to make sure my body knows it stills needs it, the conniving little bitch it is! My joint pain has been so unreal lately and much more persistent. Tylenol does not cut it and the cramp attacks I get (where literally out of no where my foot for example will start to spasm) are something that I can’t even massage out, I just have to wait until it passes. My foot cramps in this weird way where my toes spasm and separate- it looks like it’s trying to mutate into something monstrous. My shoulders and back are always sore and stiff. I can’t tell you the amount of times I have felt like I have thrown out my back from just reaching for the toilet paper beside me. My neck has also been acting up lately as well as my elbows! WTF body! Pick one or two spots, not multiple!
The only thing that seems to work for my joint pain when it’s not in a flare up is this cannabis cream I got. It works some serious wonders and leaves my perma dry skin nice a soft. Does anyone else have serious dry skin as a side effect of their medication or is that just me because I also have eczema? Anyways, today I also went to Saje Wellness to pick up their Pain Relief roll on to see if that would help because their Peppermint Halo has really helped with my head aches lately. However, nothing works for my random spasm attacks other than falling to the floor in a ball and hunching over the spasmed muscle/joint and rubbing it while quietly cursing my body for betraying me this way. There may be more effective ways to deal with this I’m sure, but for now this is what I have resorted to.
My urgency is starting to go up a little bit. At 20 mg of Prednisone I was going 1-2 times a day, but lately we’ve been bumping up to 3-4 times a day, which is still less than initially when I was diagnosed, which was 13 times min. some days. I’m not overly concerned yet, because again I haven’t had blood these past few days, it hasn’t been painful, and as long as there way a washroom nearby I was okay. The gas has been a little intolerable though. My poor dog must have become immune to them by now because I have dutched oven him so much lately and he hasn’t come up from under the covers gasping for air. I’ve also been experiencing what I think are ulcer pains. It’s not a cramp pain. It’s a sharp, shooting pain that comes every once in awhile, and usually around the time when I feel bloated or off already.
Oh and we are on week 4 of spotting/ having slight menstrual cramps. WEEK 4. Just give me my goddamn period at this point. How do I have this much crap up there to be spotting for this long?! I am dreading the day I finish my pack of birth control, because if these cramps are any indicator, my uterus is going to rip me a new one.
I just want off Prednisone.
I have gotten an ear infection that now requires me to see my ENT monthly to keep an eye on it because my immune system is so suppressed, and there is “mild” concern of it getting into my inner ear and potentially causing meningitis (not scary or anything). I also got early signs of Thrush (found out yesterday) which is an oral yeast infection (I was so grossed out when he said that) and is apparently pretty common among patients on Prednisone. My stressed induced TMJ has been such a hassle to manage because I don’t currently have proper coverage or the money laying around to go see my dentist and get a custom guard made (seriously the indirect medical expenses of this disease are insane). I have a perma runny nose and head aches that seem to come and go so frequently, its almost a shock if I don’t have at least 3 in a week. And I feel like my brain is mush!
This could be due to a number of things, but most of them are related to Prednisone. I’ve been having really restless sleep lately, where I can fall asleep usually by 11-11:30 pm but I wake up all the time and just feel so uncomfortable that I can’t sleep. I don’t know how to explain the discomfort other than that its a whole body experience. I feel jumpy and like I have a pit in my stomach. It just leaves me so restless and I can’t find a position to get comfortable in. So my sleep schedule is all over the place. That and I think the medication just messes with your brain receptors because lately I feel like I can’t even speak. I either just completely miss words from my sentences or combine words. It’s terrible! And I am so forgetful. Halfway home from the mall today I realized I left my purse hanging on a chair in the foodcourt. I don’t know what angel was watching over me, but it was actually still on the same chair, untouched and being watched over by a nice couple who was planning on taking it to security after they finished eating.
It’s so frustrating feeling like your losing it. I have forgotten conversations I have had with people, I forgot I bought a concert ticket and my friend had to show me the e-transfer I sent her months ago to prove it to me that I did buy the ticket. I forget everything! This is why I bought myself a nice new agenda to write everything down, and even still I forget things.
The exhaustion itself is enough to drive a person mad. It’s a sad day when you feel accomplished for being able to shower, get ready to go out, go out and to run errands, do my taxes, and see a doctor at the medicentre (all of which this took 4 and a half hours to do) and then require a solid two hour nap just to get through the rest of the day of socializing with family at home….
My relationship with prednisone needs to end now. I am supposed to start 12.5 mg of Prednisone this Tuesday, which I feel like my body will scream bloody murder over.
But we will see what my specialist has to say about it all because I have to tell her about my yeast infection, ear infection update, and I got blood work done Thursday so she will have these results by next week. Fingers crossed that went well at least….
In other news I will be able to update you guys on what it’s like travelling with Humira! I am off to Vancouver this Thursday through Sunday and this coming weekend, which of course was my Humira weekend. I’m interested to see what security at the airport will say about it.
I am hoping to have that post in next week and then maybe I will try to find some inner motivation to squeeze in one more post this week before I leave (I was thinking another more personal post related to my currently relationship with my body since that’s what I seem to be struggling with so much lately).
But happy Sunday!