Simple Exhaustion

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I am exhausted. Simply exhausted. So that infection in my head, apparently isn’t an infection. The kicker? No one really seems to know what it is. Basically I’ve had a headache since early December, varying from moderate to severe, but it’s always there. I had finally caved and stopped at an immediate care, which is where I was told it was an infection. They gave me steroids to reduce the inflammation and some medicine to help with the side effects of “vertigo”.

Well, last Thursday (today is Monday), I went back to the immediate care because for the few days prior, my headache was staying purely in the severe pain range. The doctor I saw there, referred me to the ER for a ct scan because she didn’t think it was an infection. So I gladly went to the ER, because by that point I was in enough pain to be consistently crying. Once I got to the ER, they didn’t want to do any more imaging since I had seen a neurologist back in 2015 for a couple of migraines (which cleared up – and completely different kind of headache) and my scans were clear. They treated me for a migraine and for pain and sent me on my way with a script for Imitrex (injectable).

My pharmacy didn’t carry the imitrex so I relied on my existing script for tramadol to try and manage the pain until I could get it. I essentially spent Thursday night to Sunday afternoon crying in my bed. Finally Sunday I cracked and headed back to the ER where they treated my pain again, and gave me a small pain med script for Norcos. They still didn’t want to do any imaging, and referred me back to my neurologist.

So, I went home crying, doped up on pain medicine that only took my pain down to a 5 out of 10. I came to work this morning, one, because I need the money, and two because of the headache and general “not right” feeling, I don’t want to be alone. I called my neurologist (as well as two others) and the earliest appointment I can get is Feb. 20th. To say that I’m stressed out and in pain, is putting it really mildly.

I am grateful though. Jon has basically been taking care of me and the house for the past few days, as well as sitting with me in the hospital trying to comfort me. Not only that, but a lot of my friends have been rallying around me, helping with anything from meds to childcare expenses and childcare itself. I don’t know what I would do without everyone, because frankly this is a bit much for me to take. I can deal with my tachycardia and my Crohns, but this pain is unbelievable, and to be honest, I’m scared.

The headaches I got before were two migraines with some low level headaches in between. They eventually just went away. Beyond the two migraines, I could function as long as I had some excedrin. Beyond that experience, I’ve never really had headaches. So this is completely new to me, and after a month of them going on, a week of them being severe, I’m worn down and really starting to doubt myself as well as my doctors.

I don’t know what I’m going to do. What if the headaches don’t subside before my appointment on Feb 20th? My painkiller script is only for 15 pills, I’ve taken 3 today to just get through and that’s barely keeping my pain at a tolerable level. I’ve already racked up $1,300 in copays for the Immediate Care and ER since Thursday, that’s not really a viable option, and neither is using up my remaining 4 days of sick time for the year.. or missing work beyond that. So I just don’t know.

I guess just cross your fingers for me. I am at a loss.

 

Entyvio Part One

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So after being sent a bill for $29 grand and many phone calls with my insurance company and financial assistance, I received my first infusion today.  I honestly was really dreading it to be completely honest, I had heard about bad infusion reactions (not longer term side effects) and seeing as how I seem to get every side effect to every drug… It made me nervous.

Apparently, I was right to be concerned. Right after the infusion I felt like I was tired. Halfway home, the fatigue was bad enough that I didn’t want to drive anymore. Shortly after that, headache.  You know, the ones that border on a migraine.  As of a few hours ago, bad joint pain.  I hopped into a support group I joined, specifically for people on this drug and asked.  I guess this does happen and as I had already heard, it lasts a couple of days.

I guess I’m just grumpy about it.  Think about your worst hangover, multiply it by 3, and make sure it lasts.  I get so irritated by the fact that some of the medications I take have more side effects than my Crohns Disease does symptoms.  At least beyond these loading doses, I’ll only have infusions every 8 weeks, but boy is this going to suck in the meantime. 

I really hope this drug works, and works long term.  I could use a break in my medical life… everything else is great, just need my Crohns Disease to get with the program.

Don’t Drag Me Down

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When you have a chronic illness it seems like it’s a constant battle to find the right medicine. ¬†Constantly trying new ones to see what will work so you can feel like a normal human being again. ¬†A lot of times those medications fail and you’re back to square fucking one. ¬†It’s frustrating, it really is, especially once you reach the mental (or physical) realization of “What medications are left for me?”

I think the worst part of this whole battle is the proverbial carrot. ¬†(Wait for it, my fellow Crohnies, you’ll completely understand in a minute.) ¬†The proverbial carrot, HOPE. ¬†You try each med, just praying that this time it’ll work, that this time you’ll feel normal. ¬†You get your hopes so high that you might not have to suffer, and sometimes? ¬†Sometimes those hopes crash in a¬†fiery ball of fuck you.

What’s even worse is when the meds DO work. ¬†When you start feeling great, but it doesn’t last. ¬†That’s what blows. ¬†It’s¬†disheartening really, it’s hard to comprehend. ¬†You finally get to feeling like a normal human again, and then there it goes, right out the window.

I guess that’s life though, taking my own advice this time, I’m not letting this little flare get to me. ¬†I’m still new to Remicade and 6mp (plus antibiotics). ¬†Just because it’s acting up doesn’t mean that I need to panic. ¬†The trick to surviving (mentally) a chronic disease is not letting it drag you down.

So here’s to keeping my chin up and curling up with my heating pad tonight. ¬†:)