Since my last post, Entyvio Infusion #4, my body hurt almost immediately afterward. My joints already ache, but I was suffering nausea and my body felt no good. I tried to sleep and I would wake in pain. The next few days I was useless, not even doing my face or hair until early the next week.
Almost every day I suffer insomnia. Or better yet, almost every night and early morning. I try to sleep, I’ve had a few hours rest in the past week. But the thing about a weakened immune system and a lack of sleep and a loss of nutrients with everyday vomiting, is you suffer inflammation and your body starts to show it with external manifestations.
For me, my skin and bones suffer. I’ve seen a dermatologist for a few years now, we’ve tried creams and ointments, body washes and nasal gels, we’ve taken biopsies and I’ve suffered stitches ripped out – thanks, Bilbo – as well as stitches staying too long in my scalp, hurting more to remove them.
Usually, my shoulders and behind my ears look the worst. Sometimes my legs and arms show these manifestations, and my face joins in on the fun. I have cold sores that appear too often – I take Acyclovir daily – and now, eye styes.
I get a stye a few times a year, usually in the right outside corner, either top or bottom lash. For the last two weeks or so, I had a stye on the top lash. I got it to pop, I know that’s a No-No, but I could see the ‘head’ of it, and even a small hard ball came out of it. I thought I was in the clear after that.
After it went away, I began to get one on my bottom lash. And then top one got worse, almost as if a hardened swollen area on my lash line.
So, since they’ve been so bad, I figured I’d call primary care and they would prescribe me medicated drops or an eye patch, which would settle the Halloween costume dilemma, I would be a pirate if I had to.
Instead, she triaged me on the phone, suggesting I needed to visit an optometrist, a new consult, and doctor for me. She told me that “they don’t mess with the eyes” and that I would be seen the same day, which is beyond amazing since some of my appointments take weeks or even months.
The optometrist office called me, told me I could be seen that afternoon. Another day, another appointment, right?
I go in for my consult, the student resident wanted to look and inspect my eyes, of course, due to the stye’s, but also because I was a “new set of eyes to be seen”. She looked at my eyelash loss and the sore area, the eye had swelling and tender areas and she could definitely see the difference between the two.
She asked questions about my eyes, wanting to know how often they happen and if they happen in the same area, they do. This, I guess, is a risk factor, and the eyelash loss is a no good sign.
I got a mini eye test, further eye exams will be done next visit since I haven’t really had my eyes looked at since the Navy, circa 2008/2009? I had to read the bottom line and I’m almost positive I got two wrong.
Another doctor viewed my eyes, and they suggested antibiotics and a repeat visit so that if it doesn’t get better, they can refer me to yet another doctor, to possibly remove the areas of repeat inflammation? I think they’re thinking one oil gland or something is to blame but we shall see.
Funny about the antibiotics, I am allergic to the ones she wanted to prescribe. I can’t have Penicillin, no Zpak, and no sulfa drugs, no Band-Aids or adhesives, either. Good to know, I suppose. Instead, we went with Doxycycline, a drug I was prescribed from dermatology once before for my never-ending skin issues in hopes it would have helped. (See Bad News and Bad Timing)
Doxycycline, the downside, is I’m not really supposed to have dairy – that means I really shouldn’t have milkshakes or ice cream too often. I’m not supposed to be out in the sun, which is hilarious because I stay out of the sun with my pale self.
She recommended an eye mask, one that can work cold or hot, to help ease the discomfort, so I had to search all over the Kroger just to find the only one there, literally – it was just a random find, too, on the bottom shelf near their personal care items. I had looked up and down every aisle near the pharmacy for one, I am shocked they don’t have more options than this.
Every side effect is a symptom I already suffer from my Crohn’s disease. Vomiting, diarrhea, flu-like symptoms, nausea, headache and stomach pains, the works. And, it adds two more pills to my collection, bringing that total to 19 1/2 a day?
I even texted my GI, Dr. S, because I had read in multiple Crohn’s columns and Crohn’s groups that Doxycycline can really mess up your bowels, making symptoms worse for IBD patients and only causing further issues. For now, she said I would be alright, but I’m almost positive the optometrist wants to keep me on this long-term?
So, after leaving the Leestown VA, I got to go to the campus VA, to pick up meds at the pharmacy. I get a number, I meet with a pharmacist to be interviewed – just like with any other medicine – and I wait, get my meds, and now I just hope the eye stye goes away and that I won’t need that next appointment.
Otherwise, last week was not so good for me. It is kind of embarrassing and I am beyond let down, but the VA hired a full-time phlebotomist, meaning that their fee-basis contract, which I was on, was no longer available for the time. I had thought I had possibly been let go due to my illness, I have been really sick these past few weeks and I thought that this resulted in the new hire decision.
I even called my boss, Mrs. V, to see if that was the dilemma. She told me that since they had hired a full-time salary employee, that the funds to offer fee-basis when the staff is full is unavailable. I told her to keep me in mind when they need another person, and she assured me she would, but that means I have to look elsewhere. What a letdown – AND this happened on Friday the 13th, go figure.
I did write a column for IBD News Today, which I shared here, too. See Crohn’s Disease Essentials and Emergency Kits. And I began a new series focusing on the differences in inflammatory bowel diseases like Crohn’s and Colitis and how they differ from IBS and Celiac. I also mention distinguishing factors for each, as well as the similarities between them.
And then, there’s tonight. Tonight is October 22nd, a Sunday. If you remember my Sunday throughout the summer, I would always go to the Burl for Sundy Best and the bands that are playing with them. Tonight they were supposed to be playing in Georgetown, where I live, and I’ve looked forward to it all week.
Tonight, I went out, trying to actually do something other than doctors or staying at my house, and of course, I would feel bad.
I mean, I usually wake in pain but sometimes it hits me on waves. My body starts to hurt, my head and my stomach. Within an hour, I knew I wasn’t going to make it. Two hours in, and I was ready to go.
I’m so beyond ready to stop feeling this way. I hate hurting. I hate complaining. I hate suffering. I hate the everyday battle. I want remission, I want my old stomach and bowels, and I want my old self. That’s the hard part, not being myself anymore.
With time, I know I’ll get better. I just have to. I know that this just can’t be the way I feel forever, even if its been forever already.
I hate my Crohn’s. I hate my body. I hate these symptoms and doctors and pain and all of it.
I know, it could be worse, but enough is enough.
I do apologize for this delay, I had started this blog days ago on WordPress, which I never do. I usually write or dictate to my phone via Google and then upload, but for some reason, I wrote on WordPress instead. I almost got this post completely finished and closed all of my open apps. With WordPress, rather than saving my post, it was lost so I’ve been bitter about that, too.
I can’t win.
Until next week, enjoy the fall weather and Halloween vibes.
For me, It Could Be Worse.
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And as always, any information you’d like to offer up about Remicade infusions or any of my current struggles and/or issues, I have open ears and I’ll happily take any tips you have to offer!
CURE for IBD:
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IBD News Today Column:
Welcome to ‘It Could Be Worse’ – A Column by Mary Horsley
Previous Posts on It Could Be Worse:
Crohn’s Disease Essentials and Emergency Kits