Its been another few weeks, but I didn’t necessarily want to post back to back since my Crohn’s disease anniversary blog came just days after my last full post, Always Another Appointment.
And then, of course, Saturdays post happened – Getting Hopes Up To Be Let Down – and I couldn’t focus on this post with the high anxiety, stress, and depression that Friday and Saturday caused. I said what I had to say and I will not remove the post because people don’t agree – but I won’t get into that mess again.
Since my last full Crohn’s and daily life blog posting, life has been going about as expected… chaos and doctor visits.
For my wonky left rib, I met with General Surgery for my consultation. I mentioned this in my Always Another Appointment post, how I was referred from Primary Care to General Surgery for my swollen rib on the left side; the 10th rib is thicker, wider, more prominent than the rest. It gets tender, swells a little, and it is painful to the touch.
I am not 100% happy with how that appointment went, to be completely honest. I showed the student nurse my sore area but he couldn’t really feel anything other than bone?
I explained to him that it was my rib that hurt, so feeling bone was right, but there was and still is a significant swelling in one area.
So the nurse got the doctor, and he felt on my ribs, too. He felt them from the front and from the back, telling me he didn’t feel what I was feeling. I took his hands and placed them where my pain is, but still, he was not understanding. He felt swelling but didn’t offer much help as I’d hoped. I felt as though they were just agreeing to agree, thinking I was a crazy person or hypochondriac. I assure you, I am not. I’ll let anyone feel my ribs if needed.
He told me that there could always have been a rib injury that I didn’t notice until now, that could explain some calcium buildup and why I have swelling. We planned for an ultrasound on the rib but the doctor did not seem too bothered and he didn’t really seem to care.
I feel swelling daily. Sometimes, it does get more swollen and painful than other times, but if my primary care doctor can feel it, and I can feel it, I’m not sure why he didn’t.
Perhaps he should have felt my ribs as I lied down and stretched my body for better feeling and view of the rib, rather than standing in front of him holding up my shirt as I try to point where I have pain.
I have the ultrasound scheduled in a few weeks and I’m hoping that there really is nothing else wrong and it can be blamed on my Fibromyalgia and allodynia. But who knows? I tell you, I do not have any good luck.
As well as my rib pain, I’ve suffered back pain recently. I’ve had such pains in my lower back to where I have trouble sitting and standing and walking too quickly.
I’ve even had to bring out my TENS-unit to help the pain and try not to feel so bad. This pain has stuck around for like a week, went away for a few days, and now it has returned. More bad luck for me?
I blame my entire body for the constant retaliation again itself.
It has been almost two months since my Stelara infusion and I mentioned already that I ‘celebrated’ my two-year anniversary of my Crohn’s diagnosis. Still, no change in my body but I’m forever hopeful that I’ll wake up without bowel and body pains.
I’ll follow-up with GI again in a few weeks, letting Dr. S know how I am managing. I am still having my normal issues, I am still vomiting, I am still having stomach spasms and tenesmus, but, I am still here. Living the dream, right?
I’ll prepare for my first Stelara injection in a little over a week, and I shouldn’t be nervous since I am familiar with self-injections from my Humira days, but then I remember this a completely different needle and I have to watch it enter my body as I stab myself in the stomach.
For my self-injection I plan on making my second video for It Could Be Worse but we will see. My first video – Crohn’s Emergency Kit – turned out to be better than I had planned but I still have so much to learn and tweak with vlogs. I even uploaded my old Humira video, you can see all of those here.
I have a few more appointments scheduled to add to this year’s total count. 5 future appointments and 15 already done. I’m sure that count will only get higher and I will always remember the year I had around 50 appointments. Having a chronic illness is a full-time job in itself.
I ended up having the MRI on my right hand, finally! I had mentioned they wouldn’t do it at the VA because of my septum ring in my last post, I have trouble removing it but I’ve never had to take it out for any scan before…
I called MSK at the VA, asking about the scan and whether it was going to happen at another facility. Usually, the VA can outsource the procedure to a different hospital but since there wasn’t a month wait for the scan inside the VA, they couldn’t justify an outside procedure just because I have a piercing.
When I called, they told me I could be seen the same day, with another 6 pm appointment time. I told the scheduler that I would attempt to be there, but I had to get the ring removed first. They offered cutting it out in the Emergency Room, but I wanted to save the ring and not have them rip my septum with non-piercing-professionals attempting to open it.
So, I attempted removal. It took a lot of force on the ring, it had been in so long and had gained a slight bend in the ring itself, making it hard to open and get closed again.
Once I got it open, my eyes watered and I thought I had about ripped my septum clean through. Thankfully, I got it out without injury!
I was prepared, I have a lot of easy-open hoops I use when I pierce my ears each time – yes, I pierce my own ears, and so far I have 5 hoops on each ear but I want to fill the entire side of my ear top to bottom. (And before people judge me for this – I have all of the necessary supplies and legitimate disposable piercing needles, and I make sure to maintain safety and sanitation during th. entire process.)
I placed the spare in my nose and I went to my evening scan.
I took out all my rings while sitting in the waiting room, and lo and behold the same x-ray tech who refused me last time was the same one getting me for this scan.
They wanted me to put on the lovely hospital gown they had to offer, but I know how to prepare for an MRI. I wear no metal, no bra and no tank tops with adjustable straps. I wear leggings and a sweater, and I plan ahead to remove my shoes for the scan.
They had me lie on my stomach, which to be honest never feels good with my Crohn’s and stomach pain, with my right arm extended in front of me and my head on a pillow.
Last MRI I had, I fell asleep. Last MRE I had, I fell asleep, too. I was certain I was going to nap for this MRI…but instead of headphones playing music like my previous scans, all I was given were earplugs, so I heard ever beep-boop-bam the machine made. I think I dozed for a moment but the nurse (not the original guy) came in the MRI room to check on me and it woke me out of my sleep.
My right arm fell asleep and I had back cramps from laying on their table for 45 minutes, but at least the scan was done and now I can wait for results.
For my left hand MRI, there was scapho-lunate widening from a previous tear – my fall that inevitably caused the ganglion cyst to appear.
I am curious if there will be similar findings for the right hand, too, or if my thumb pain on the right wrist is related to joint pain from Crohn’s or Fibromyalgia.
My insomnia has been in full swing this week. I am not sure if my Melatonin and Mirtazapine cocktails at night are working anymore, I may have to discuss with my GI and Neurologist about upping the doses or figuring out what I can do to avoid being up 18+ hours a day.
Just last night I was up until 6 am this morning. I toss. I turn. I get up and I try to move around the house, let out the dog, drink water, and watch television, but I cannot seem to get tired. I play on my phone and write a lot of my blogs, which I know doesn’t help some, but it usually helps me fall to sleep, but still, I lie there wide awake. Something’s gotta give.
I did have a few good days these past few weeks.
With my Crohn’s disease diagnosis anniversary day, it was also St. Paddy’s day, one of my favorite days of the year as I am part Irish and I clearly love green. I got to go out and celebrate a few days in a row, with some leprechaun’s and green beer, an impromptu trip dancing and 2 am pizza deliveries. I have to say, this one was a blast!
I did somehow manage to let my wallet fall out of my pocket not an hour into the festivities on day one of celebrations, losing both my license and my bank card, which meant I had to go to the DMV and call my bank replace them. I am only sad about this because I had that small wallet since my time in the Navy, almost 10 years. Must be my terrible luck, I definitely do not have the luck of the Irish, it seems.
I had to have the lady at the DMV print 2 copies of my license because the first didn’t say “Veteran” like my previous one and having that on your license is VITAL sometimes. So, I had to search my phone for a copy of my DD214 to prove my veteran status while waiting 20 minutes as she called her boss to fix the error and force a reprint.
I will say, my photo is not as good as my last but at least I don’t have red hair on my license anymore, now it actually has green!
I have gotten to enjoy live music a few times these past weeks, always a favorite, but mostly I stay home, in pajamas.
In my job search, I had a few interviews planned but they were canceled due to my hair color. Highly discriminative but what can ya do? I am not going to change my appearance because someone else disapproves. That is not the type of place I want to work or the type of people I want to work for.
I do have a job interview with the State this week, so fingers crossed! I have multiple applications in, so any of these jobs that I have applied to would amazing! Salary, vacations, and merit-style employment, I’m really hoping for these!
I at least still have my writing gig with IBD News Today, where I share a new column every Friday. The past few articles have been The Different Radiology Scans for Crohn’s Disease and IBD and Letting Your Crohn’s DIsease Become Your Passion. IBD News Today has even been creating new image templates for my work and quotes of mine, sharing different articles of mine throughout the week.
I hope you guys continue to follow my journey, I know it is more chaos these days than real or helpful information, but look for my Fibromyalgia focused blog post and keep following my Published Work page to keep up with all of my outside articles and columns, those may be more helpful.
All I know is that 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%!!
IBD News Today Column:
Welcome to ‘It Could Be Worse’ – A Column by Mary Horsley
Previous Posts on It Could Be Worse:
Getting Hopes Up To Be Let Down
2 Year Anniversary of Crohn’s Diagnosis Day | It Could Be Worse Blog
Always Another Appointment | It Could Be Worse Blog
Stelara Infusion & Ganglionectomy Pain
Crohn’s Disease Essentials and Emergency Kits