Well, what a week?!?
After Friday’s ER visit, Saturday and Sunday were spent on the couch, not doing anything but complaining about the chest pains and all of my other ailments. I continued to have sharp pains, even with the prescribed muscle relaxers, so something was wrong.
At first, we thought maybe my childhood Shingles had come back, being on medications that weaken my immune system and all, but this pain was on my right versus my left, and Shingles usually favors one side, and there was no rash on my body. I seemed to be having nerve pains, as I learned from a friend of mine, and it was later validated by another trip to the ER.
I woke up on Monday and the pain had only gotten worse. The sharp pains came more frequently, so I rushed to finish the majority of my homework and then I planned to call GI like the ER doc had suggested.
Dr. S, my GI doctor, she was aggravated that the ER had not done a CT Scan, but they had tried to ‘spare me radiation’. Dr. S called a few of her doctor friends, and she suggested going back to the ER, to get more blood tests, and to get the CT Scan that was skipped on Friday.
Dr. S was curious to my pain and she even thought it could be a pulmonary embolism, also called a blood clot, so a trip to the ER was inconvenient but necessary. If I didn’t talk to her later in the day, I was told to call her Friday, by then she’d know more.
Going back to the ER twice in four days was exhausting. It was deja vu, really, with D-dimers and blood cultures, a CT scan with contrast fluid and rolling veins, allergic reactions to the heart monitor stickers and multiple needle sticks, all to find out nada.
The only positive was I got another medical bracelet for the collection, and I still have a few ‘crop circles’ on my body from the heart monitor stickers. How lovely, they took the skin with them.
The ER doctor suggested neuropathy, nerve pain, and he wrote a script for Gabapentin, another pill to add to my growing list of medications, this one I will take 3x’s a day. I was not taking any more muscle relaxers, and I discarded the other medications from the previous ER trip.
I was told to call GI around Friday, the same plan Dr. S and I had made earlier that day. I was supposed to check in with her about everything, including my blood and stool tests to begin the Remicade infusions, but I will do that on Monday instead.
The ER doctor did tell us about a patient of his, a female around my age, with Crohn’s disease, who cured her Crohn’s disease with worm treatment. Yes, worms. An intentional infestation. Again, with live worms. From a veterinary office. Um, I don’t think so.
Supposedly there is a gentleman in Europe who has a 90% remission rate using worms with his patients. One treatment is all you need, and it costs around $3000 for a patch. This patch has worm larvae, which burrow into your skin and bloodstream, into your lungs, you cough them up, and they go into your stomach, and they sit in there and help the weakened immune system somehow. Seriously.
I honestly don’t know if I could do it. He told me to go to the website autoimmunetherapies.com and check it out, but I don’t think I could handle knowing worms were in my stomach. I couldn’t handle knowing they were moving around and doing who knows what else. Yuck.
I spent the rest of the evening and early morning finishing homework. Another week finished and 3 weeks left until my Communications degree is complete and I begin my Journalism certificate.
On Tuesday, I did my civic duty and voted in the presidential election, like most of you did, too. There has been enough political posts and drama this week on social media about it so we won’t dwell on that here. I’m OVER it.
Side note, Manic Panic liked my voting selfie I posted on Instagram, a MAJOR BIG DEAL to me. That’s where I get my hair color and I could not have been happier they acknowledged my picture. To make it even better, they commented on it, too. 💚💚💚
And Wednesday. Wednesday was a no good day either, for the most part, but we did get to see Phil’s parents and have dinner with them, which is always nice. Philip got his Christmas gift early, a new vacuum to play with, so he was very excited and happy about that!
We also got to walk around the antique mall, so the evening turned out significantly better than the day had begun. I found a sailor coffee mug for $2, a perfect find for Veterans Day this week.
Thursday, I spent trying not to think. About anything. I found myself shuffling back and forth through the house, cleaning and putting odd items back where they belong. My office is STILL a mess. (My real office, not my ‘office’ bathroom lol)
It had frosted the night before, so I adjusted my kitchen to hold all of my plants. One on the fridge, one by the front door and one by the back door, one sitting on top of my 3-foot vase, and 5 new plants atop my china cabinet.
My ‘Carol’, a Swedish ivy plant given to me from my parents, she’s grown a couple feet and hangs over the side, and I absolutely love it. It’s like a jungle in here!
Otherwise, I’m still having nauseated nights and puking up my meals. I have had a lot of my normal ‘office’ issues, like bleeding and urgency, and the breast pain comes and goes unexpectedly. It is beyond painful.
I was overly tender this week, feeling like my entire body was one big bruise, and I woke up with hot flashes in the night, covered with sweat. I spend the nights up and down and in and out of bed, never feeling like I get any rest at all. 3 am to 4 am seem to be Mary’s witching hour for one. I get a lot of writing done at this time, at least.
And so, It Could Be Worse.
And today, well, today is Veterans Day. To some, it’s another vacation day or the beginning of a 3-day weekend. To others, it’s a day of remembrance for those who gave up their freedom, their time, their lives to protect ours.
So, when you wish someone a Happy Veterans Day, please remember that Veterans Day is a day to honor our brave heroes who have kept our country safe and a day when we are thankful for the service and sacrifice of those who volunteer their lives for yours. Some volunteer and sacrifice everything up to, and including their lives. It’s not just another 3-day party weekend.
To all the brave men and women who have served and who continue to serve in our armed forces, I thank you for your courage and I can proudly say that I have stood beside you. Thank you a million times over, your sacrifice does not go unnoticed.
Thank you for reading, and for keeping up with My Crohn’s Journey.
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And as always, any information you’d like to offer up about Humira or any of my struggles and issues, I have open ears and I’ll happily take any tips you have!
For those of you who are continuing to donate to the Cure for Crohn’s and Colitis, I encourage you to donate towards my team page with CURE for IBD – where 100% of the funds We raise will be allocated to IBD research for a cure. That’s right, 100%!
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