Damn. Another two weeks have gone by since my February post, with a few more appointments and doctor visits, and even more new consultations added.
With my Crohn’s disease journey, I’ve not felt any different having started the Stelara. I had my follow-up with GI, Dr. S, this past week, and I got to explain everything to her.
The few weeks after my Stelara infusion, my urgency and bowel pain has been flaring. I’ve spent most of my time in our spare bathroom (read: my second office) and my symptoms are running wild here lately.
I mentioned to her that I’ve been diagnosed with Fibromyalgia and I would like to take the time to write a blog focusing on that specifically, but I’m still researching on it.
She asked about my perianal disease, luckily no more abscesses or fistulas, only a fissure here and there – ouch!
She told me the Stelara could take 6-8 weeks for effect, so around the time of my first self-injection of this medication.
The Stelara needles are very different from the Humira pens I have used in the past, with the automatic button and small needle that you don’t see. The Stelara shots have more of a ‘normal’ needle style, with the patient watching the needle go into the skin. I’ll have to inject a few times a year and I can do it at home, luckily.
Around the time of my injection and the time I should be expecting to feel better, in around a month, I’ll have another follow-up with Dr. S in GI to see how I am maintaining.
And then later this week, I met with plastic surgery for another follow-up appointment.
Taking my blood pressure and my temperature was an event in the plastic surgery department for me.
As per usual, my temperature was a little high. I seem to always have a low-grade fever. I blame being immunocompromised for always keeping me constantly feeling cold but running a fever.
When they went to check my blood pressure, they thought I was suffering a heart attack! My blood pressure was sky-rocket high, even after sitting in the waiting area for a good 40 minutes.
They hooked up my right arm, and it was nuts. He told me it was so high it was in heart attack range, that this is something they would take me to the ER immediately for. The nurse was shocked and went to tell his doctor.
Then, they tried my left arm and right arm again. They did this a few times and asked if I’d ever had a valve or blood pressure issue? I told them I hadn’t.
There wasn’t any issue with the left arm, only the right. After a few re-dos, they decided that it was a possible fluke, they couldn’t explain it, they logged it in my medical chart.
The doctor, Dr. R, looked at my ganglion cyst surgery scar, the reason for this follow-up.
My cyst area is still tender and my range of movement is nonexistent. I have to baby my left hand still, not using it as much as I can avoid. Certain movements send shooting pain in my nerves and my grip is still weak. The doctor looked at my scar, moved my wrist and thumb around, which was very uncomfortable.
He almost seen surprised when he said ‘it doesn’t look like its coming back’, almost as if to insinuate a ‘yet’ at the end of it.
The doctor told me that I would probably still have pain and tenderness, that I could wear a brace if it helps. He told me that they wanted to see me again in three months to make sure that it wasn’t coming back and to see if I’m still having nerve pain with it. I mentioned that I have been taking Gabapentin for other unrelated nerve pains and that it helps some with the hand.
Now, my other hand. Remember I couldn’t get my MRI because of my septum piercing. I had called the VA about rescheduling it for an outside source who would perform it with my nose ring, and I had talked to a lady about the appointment not happening that day. She told me she would call back, but she didn’t.
I called the VA after a week of hearing nothing and I was told there was another representative that I had to talk to, but she was at lunch. I called later that afternoon, was transferred around 4 times, only to be told that I would have to talk to my primary care team about it.
So, I called primary care. When I talked to my nurse, she told me that primary care had a hard time scheduling outside visits but since this was a musculoskeletal issue, perhaps they could set up the referral.
While I had my nurse on the phone, I mentioned my rib issues that never were resolved. In January, I had had an X-ray on my ribs after seeing primary care, since there is an area of inflammation on one single rib. I had mentioned it to my primary care doctor, Dr. C, and she had felt around my left side rib, noting that there was a swollen area. (See Ganglionectomy)
After the x-ray’s, I got a letter stating that my lungs were clear but with no real answers as to why? When I asked my nurse about it, she was a little confused and kept bringing up my right side breast and never pain in relation. Please note, these pains are unrelated.
The breast nerve pain, it is like an electric shock happens sporadically, sending a shock up the outside of my right breast. Why? I still don’t know an answer other than it is nerve pain…
The left-sided rib pain and swelling, it is like a lump on or near the very bottom rib on the left side. Sometimes it feels larger than normal, it feels sore to the touch, and it is always in the same spot. Comparing the right side, there is nothing, no lump, no swelling, just ribs.
I expressed this to the nurse, and she told me she would ask Dr. C and return my call.
When she called back, Dr. C had told her that the x-rays were clear but she knows there is a nodule of sorts on this one rib. She told me that I would need a new consult, to General Surgery, to find out what it is, why its there, and if it needs removal. My luck, it will need surgery but I’ll not get ahead of myself – knock on wood. Fingers crossed I don’t!
I’ll have the general surgery consultation this upcoming week, I’m sure it’ll require more appointments and a scan of sorts, whether it be another x-ray or MRI to be had.
Sometimes, I feel like I live at the VA. And not only do I visit the VA, but I’m constantly calling them. I’ve already had 14 appointments this year, with 4 future appointments already planned.
I had to call the VA for another matter this week, my prescriptions. I went online for a print out of my current medication list and some of my medications, my Crohn’s disease pill that I take daily, Imuran, and my mental health medication, Lexapro, they had been marked discontinued.
I had to call and request they be marked as active again. I had mentioned to GI during my last visit that I needed to refill my Imuran soon but it was most likely forgotten and I haven’t seen mental health since there was an invasion of my privacy, I was worried they’d make me have another visit before letting me refill my prescription. Luckily, this was an easy fix and their active status is back to normal.
Otherwise, in the past few weeks, I’ve gotten more insomnia. I thought perhaps this problem had been helped with my Melatonin and Mirtazapine but I’ve had more than a few late nights again here lately.
Sometimes I can fall asleep but I wake in the middle of the night, restless. Sometimes I can’t fall asleep until my body crashes, sometimes after 5 am.
I’ve not even been doing my face or hair lately, either. I’ve not shared social media stories daily or been as active. I’ve been home most days in pajamas when I’m not at the VA. I hope that helps explain why there is a lack of images in this post, usually I have a bunch throughout but I think I only have less than a handful in this one…and not a single selfie!
My body hurts, my back, my stomach, my head, my hands, so this time has been pretty uneventful.
I did make a medication bottle wreath from my hoarding mess of medicine bottles from my last couple years. You may have seen already through social media, but I keep each bottle like I do with my wristbands from procedures, and I decided to make a wreath for my office (read: my real office). I still have a ton more, I thought about creating one for the VA, maybe GI would like to have one?
I also signed up for Lexington Take Steps walk this year for Crohn’s and Colitis. I had participated in 2016, I dropped the ball last year and forgot to register, so I made sure to register early this year.
It will be held at Whitaker Ball Park, Lexington, on September 16, 2018. You can Join My Team with or without a donation, or you can donate to my Cure For IBD donation page if you’d like instead. I prefer donations go towards Cure for IBD because 100% goes to research, unlike other fundraising pages.
I know I had mentioned in my last post about starting a new job and I did go in for the first day. I learned the ropes, the expectations and everything about the job but it was completely different than what I’d been told in my two interviews with the company. I thanked them for the opportunity and I have continued to look elsewhere.
It is harder than it looks when you have to think about your health when job searching. I have to think of hours, how the job feels about appointment availability and doctors visits that can happen with little time in advance, the details of the job and what is required, as well as worrying about my wellbeing and how my body will feel every single day.
If it weren’t for my hands being difficult, I’d be doing phlebotomy.
If I could 100% choose what I do, I would love to focus on writing and journalism. I know what I will and will not do, it is just a matter of finding that right ‘fit’ and thinking about my Crohn’s and Fibromyalgia and everything else that is wrong with me.
For now, I suppose I’ll focus on getting well.
For me, It Could Be Worse.
And as always, any information you’d like to offer up about 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:
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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