I Am Not Okay

I have had some incredibly low moments as of late. Lots of feeling defeated, very little hope for the future, just really low. I’ve been basically bedridden since November 3 (Just looked it up. Shoot. Two months solid. No wonder).

Anyway, it’s fine. (My motto as of late: it’s fine. I’m fine. Everything’s fine! ) Derek has been amazing - seriously. He has done all of the Derek things and 95% of the Becca things, and he has been so loving and encouraging and guilt-dismissing the entire time. We’ve also had a couple holiday breaks in there which has helped. James had to quarantine from exposure for ten days which meant less early mornings, no soccer practice, and another potential helper at home. Hazel was sick and fevered for a bit so she stayed home from school as well. All of this eliminated some busy work and allowed me to stay in bed with a heating pad. Not the dream, obviously, but nice to be able to be down with less repercussions. 

I have learned to lean more on my village, let people help me, release the guilt of not doing more (that part’s the hardest). And I’ve been immensely grateful for a village that steps it up and lets me lean.

I had my first Humira injections two weeks ago. I was so hopeful but really felt nothing. No scary side effects, thankfully, but also no relief. I knew it rarely is effective so soon, but I hoped I would be an exception to the rule. Nope, no such luck. I finally spoke with my doctor, though, and explained how I was not, in fact, fine. I was not okay. He said to start taking 10mg of Prednisone again; I explained that even the recent 15mg had done nothing. So he put me on 30mg. And I took my second dose/injection of Humira. And I was able to take a breath (ha, literally as well… I forgot to mention that I’d caught Hazel’s cold and have therefore been unable to breathe on top of it all. Oh, and had my period too! Please feel sorry for me; I certainly do). 

Here is a message I just posted to an IBD group I’m part of on Facebook:

“ I’ve talked a lot of trash about Prednisone as I get pretty much every awful side effect and hadn’t expected the crazy… but I’ve been off it for a good while and flaring so badly I pretty much was bedridden. (Sooo defeated. So low mentally. So desperate.)  Got put back on a decent dose of Prednisone, and after just a couple doses - relief. Sweet, heaven-sent relief. I left the house yesterday, took my husband on a movie date! And I was symptom free the whole time!! 

I know this feels like no big deal - a few hours of feeling good? But my gosh, it is heaven after weeks/months of consistent agony. So if you’re down in the trenches like I was, chin up. Be assertive (call your doc and explain how you’re really not okay), take the scary medicine, and know that hope is just around the corner. ❤️❤️ ”

I should also sing praises for medical marijuana. That has saved me lately too - dulling pain, calming nausea, soothing anxiety, and slowing down my digestive system so I can get a moment’s reprieve. 

And I certainly should sing praises for a Heavenly Father who sends me evidence that He’s aware of me and here with me, even when I very much feel abandoned. I also could say a thing or two about friends/family who act as His hands in so many ways, such as calling/texting out of the blue because they feel prompted. Life is fricken hard. It helps to have a bit of Heaven involved.

Comments

Post a Comment

Popular posts from this blog

Coffee Grounds

Oh man. I’ve been sooooo much better the past few days. SO much better than I was for months. I know it’s all thanks to the Prednisone, but I don’t care. It’s been an enormous relief and has offered some desperately needed respite.  I was able to not only participate in but also help pull off Cora’s baptism. I was able to play card games with company. I went to a doctor’s appointment (kidney doc) in Safford today - AND to lunch - with no awful consequences! This is so big, you have no idea.  The only weird thing is that (tmi) my diarrhea has been black. Like black black. And like full of sediment.  Sort of sandy. I randomly thought to Google it (purely curious at that point), and I learned that this is typically indicative of an active bleed higher up in the digestive tract - maybe the esophagus/stomach/small intestine. They compared it to ground coffee grounds, and I was like, “Yes!” That described it perfectly - well, if coffee grounds are black as night! So, naturally,...
Read more

Decidedly Not Marshmallows

Apparently Crohn’s can give you ulcers in your nose - which hurt tons and give you ear- and headaches. I’m feeling incredibly sorry for myself and pretty pissed that not even my nose is safe. I frequently have like scab-boogers in this particular place (ick, sorry), and if I get them out, my nose bleeds. I’ve mentioned it to Derek but just figured the dry desert air was to blame (it’s been at least a year that this has been going on). Well, I put a scope in my nostril today to see that area and what was going on, and it looks undeniably like an ulcer. Googled it, and sure enough. Apparently they really were scabs; it’s now an ulcer, and it’s yet another Crohn’s thing. Somehow when I get sores in my mouth (another fun Crohn’s symptom) or now in my nose, the pain radiates down my neck, to my ear, behind my eyes, and to my head. Strange how something so small can be so debilitating. I put Oragel in there in hopes that it’d help. It does some. Every time I try to take care of my body - exe...
Read more

You Have Died of Dysentery

So here’s the deal. I’ve had GI issues (tmi: urgent, watery diarrhea that started out as intermittent then escalated to like 12xs by breakfast) and pretty intense abdominal pain since freaking Thanksgiving, but the doc here hasn’t been able to figure it out. **Edit to add:  I initially went in asking for thyroid blood work because I assumed I had something wrong there. I was experiencing overwhelming fatigue and brain fog and even had some strange neck strain and pain. These issues along with the gut problems could very well have indicated a thyroid issue. My doc ordered lots blood work and a stool sample and saw that my fecal Calprotectin levels were elevated not nothing else of particular note. When he told me about the Calprotectin, he explained that it indicated inflammation in my gut. I basically rolled my eyes and thought, “No duh. I’ve been pooping my brains out for months! Of course things are inflamed.” I was so convinced it was thyroid related at that point that I mostly ...
Read more