Well, shit. It has been over a month, almost two, since my last blog post, and it’ll probably be exactly two months time by the time I get this written and edited, photos added and the post uploaded. I know, I’m still slacking. I feel terrible about it.
I do apologize for the delays, every day I think about my blog but I just cannot seem to get everything I want jotted down and I hate to leave anything out.
With each day, more information has to be researched and added, which just means more to do in my nonexisting free time. I just feel l like I’m running behind with everything and I’ve just been terrible with updating you guys like I used to…I can only say I’m trying.
But anyway, things are crazy in my world. Let me tell you…
Since my last blog, I’ve had numerous doctors appointments, including MRIs, CT scans, ultrasounds, x-rays, and, nerve blocks. I’ve seen GI, neuro, optometry, primary care, and the thoracic and pain clinics. I live at the VA sometimes it seems.
The day after my last blog, I had an MRI for my chest wall nerve pain that radiates through the side of my right breast.
I’ve mentioned this a million times, the electric shock feeling that always startles the hell out of me when it happens randomly. I’ve been taking Gabapentin for years to prevent the pain, and November marks three years I believe.
My MRI was scheduled for a Saturday, so I had to wake up early and go to the campus VA. With the MRI, I knew better than to try to have it done with all of my earrings and nose piercings, considering last time I had a hell of a time with my septum being in (even though it is NOT magnetic.
So, I had the fun task of removing all my jewelry beforehand — little do they know, I still had piercings in, which only further proves my point and validates my argument that I should be able to leave in my jewelry.
As they usually do, the MRI went as expected and I made sure to wear something comfortable since I’d be there a while. The scan itself takes about 35-40 minutes and I usually fall asleep at least a little. This time I fell asleep right as the scan was finishing up, so no nap for me.
The results from the MRI showed no reasoning for my breast nerve pain. I think I will be asking my doctors why a nerve block for this pain hasn’t been discussed, now that I am familiar with nerve blocks, but I’ll talk about those in a moment.
Days later, a CT scan, to view my ribs and chest wall, as we suspected costochondritis for the underlying rib pain. Remember, it began with my back, one single rib area was swelling and tender to the touch.
Now, a few areas on my left side hurt, specifically the T9 and T10 ribs, and the original lower rib to boot.
With that next week being the 4th of July, the VA would be closed, so what’s another week of waiting when you’ve dealt with it for this long already.
When I met with Thoracic, we decided to try the temporary nerve block. Shots would be inserted into my back along those ribs, with anesthesia to help calm me.
I got to that appointment, and I was so nervous. The anesthesiologist marked the targeted rib area, at the spine and the injection would be to the left. I knew to wear comfortable clothes, I was even allowed to keep most of them on for the procedure.
I was under the impression that I would be knocked ‘out’ like during a colonoscopy, but that wasn’t in the plan discussed with the anesthesiologist. The meeting with that doctor left me even more nervous, with talk of an epidural in case they decided against this temporary ordeal.
I got into the procedure room and had to get a gown on anyway, even with clothes underneath. Some of the nurses even recognized me from other clinics – a lot of the staff are beginning to recognize me and know me by name all over the VA hospital because I’m there so often.
In the procedure room, before we even began, I was scared and nervous and I started to tear up from anxiety. My blood pressure and heart rate monitors would go high and low, and I dropped low after the procedure finished.
They injected and numbed my back after giving me the calming medication cocktail of Versed and Fentanyl, I was no longer nervous. I remember feeling sleepy but awake and not feeling anything, so that made me happy.
I was sedated, but still somewhat lucid. I was monitored when we finished because my blood pressure was dropping but I was finally let go to go home and rest. I had been up since early that morning with no coffee and wasn’t allowed to drive for 24 hours.
But, a positive, I did get another medical bracelet to add to my collection. I found a photo of my medical bracelet garland from about 2 years ago – I think – and it is shocking to see how many new ones have been added and how large this thing has gotten.
My back bled a little and it was the most bizarre feeling having no feeling in my left side area. The rib tenderness was no longer there, no feeling was, but the rib popping still occurred. That would not be changed by this nerve pain solution.
The nerve block only lasted temporarily and the feeling came back, but I think it came back in full with even more issues. I got irritated around the injection sites, and I could tell I was bruised. And, somehow, I have no clue how or when, but I got a scratch on my back and I couldn’t feel it because I had no feeling in the area for a few days! How odd.
Here recently, my left side has felt like I’ve been beaten up all night and it hurts to laugh, and I love to laugh! Sometimes breathing even hurts, especially when I began to get sick here recently, but I’ll get to that.
I had to call my thoracic doctors to be seen sooner than scheduled appointment, my left side just brutal. I was told to go to the ER if it got worse, of course, but otherwise, I’d get to see them a week earlier.
I know Costochondritis was only focused on a little, but I will be asking for more information and for it to be looked into. As my rib area gets more and more tender and sore, it gets more swollen.
With my ribs almost protruding further out than my right side, I can see the swollen cartilage and even the ribs that rub against each other, the popping ribs.
I’ll see thoracic this week, so hopefully, we can figure this out before I literally injure myself further with something as simple as laughter. It hurts, people!
But, you guys, there’s so much more to tell Y’all.
I saw primary care, and I had that fun transvaginal ultrasound. I still do not know the notes for that and I will follow up with my doctors to see if I still have my ovarian cyst, Myrtle.
I saw optometry for a follow-up, thank goodness my lashes have grown back and my Doxycycline helped calm my eyes. I still use the eye drops prescribed and I call them without any hesitation if needed, but we aren’t planning another visit for 6 months if all goes well.
Since I have a history of irritation and sebaceous carcinomas are a concern, monitoring any change in my eyes is very important.
I ended up going and seeing Optometry again because I feel like the inside of my left eye feels very scratchy, so much so that I can’t really see too well in the morning until my eyes ‘fix’ themselves.
I try to rub my eyes as I initially wake up in the morning, I mean, we all do, but my left eye, the inside corner, up in the top, it just feels like its scratchy. I cannot explain it.
They tested my eyes, putting eye drops that like looked like highlighter ink in them. The rest of the day my tears, nose, and mouth had a bright yellow tint to it. So. Odd.
The optometrist suggested that I have some chronically dry eyes and that I should be using drops multiple times a day to help the scratchy feeling. She also noted that there was a slight scratch inside my eyelid, probably due to the dryness. So, now, I am using those drops mentioned before a lot more often.
I saw neurology for my migraines. The weather in Kentucky has been gloomy and rainy quite a bit this summer and my head has suffered. Barometric pressure definitely triggers my migraines, along with light sensitivity, needing caffeine and nutrient loss.
Then I had to see primary care for getting ‘sick’. I was coughing and my lungs were fighting me to get air, and with my CT scans showing ‘patchy airspace disease’, Dr. C wanted to make sure I didn’t have an infection. I ended up visiting their clinic a few times, each time my lungs sounding worse and worse.
I was prescribed more Prednisone, but temporarily. I was given cough medicine with codeine so that the coughing wouldn’t keep me up at night. And, I was given a steroid inhaler to help my lungs and another chest X-ray just in case. So far, that has gotten better too.
I followed up with GI, as well. This was a three month follow up to see how the Stelara and my Crohn’s disease management is working. I still have symptoms, but they’re lessening. We are working for remission but we gotta keep monitoring everything.
I will type a post focusing on this Stelara Self-Injection #3 with the video of my injection; during this injection I discuss side-effects.
With my Stelara self-injection #3, Dr. S ordered blood work for my liver, kidneys and everything else. We do this every eight weeks and make sure the meds are working and my body is okay.
I got fussed at a little by both my primary care and GI team. One of their first questions asked was about my weight loss – 23 pounds since January, unintentionally.
I’ve not changed my eating, I’ve not done anything differently, but still, I continue to drop weight. Dr. S said we would continue to monitor it and hopefully, it doesn’t get worse or too severe; to continue to lose more would be dangerous and worrisome.
I think I mentioned before, that the last time this happened and I dropped weight for no reason, I had my perianal abscess happen, requiring two rectal surgeries, one emergency incision and then the fistulotomy, stuck 16 weeks with a sore bottom.
Every time I see GI, she asks about my bottom, making sure I don’t have another or fissures and fistulas and each time I’ve been able to tell her I’m fine for now.
No less than a week later, I found swelling and tenderness, requiring a second visit and a lovely rectal exam.
Dr. S examined my rectal area, with me being smart and wearing a dress to avoid their parachute gowns, and she found my swollen area, but couldn’t confirm what it was just yet.
Fistula? Abscess? Swollen glands? It was or is a small nodule but it definitely doesn’t belong there of all places.
I was told to monitor it and to go to the ER if swelling occurred. It got smaller and then back to swelling, but it hasn’t gotten any bigger, but it is definitely sore. So, I get to just wait with this sore area in an uncomfortable location.
And then, there’s this week…
I called Thoracic to be sooner than my scheduled appointment because my ribs have been brutal. The popping continues to happen, the left side is tender, and its as if the entire rib cage on that side is affected.
I went to the VA for an appointment scheduled for 10. At 10:20 I was taken back to the private rooms, oddly I’ve always been seen in the same exact one.
I waited. And waited. And waited.
The thermostat was set to the lowest setting, I wore a top and skirt for easier access to the rib cage. I was freezing to death!
After I waited for an hour in the icebox, I asked a nurse for an update and I turned the thermostat up. I was getting more and more irritated the longer I waited.
The cold air had me shivering and that further hurt my ribs.
Finally, the student doctor arrived and I told him everything I could. I showed him my rib cage and he left to get the surgeon for the appointment.
The surgeon went over everything I had already gone through with the other doctor and we looked at my ribs.
He wanted me to pop the ribs so he could see but I cannot necessarily make them do it, they do it on their own at random. I tried and tried and I felt as though the surgeon didn’t believe me.
He did say that my ribs were not symmetrical but he tried to say that perhaps I was born that way. I call bullshit. There is no way that I was born this way and it just started causing pain one day.
Then, he said he wanted a second opinion from my rheumatologist. I think that his disbelief in what is happening with my pain led him to just want to push my problems to another doctor.
I felt beyond beaten at this appointment and I asked if we were finished and I left in tears.
Pain is exhausting. Doctors not listening or being able to help is exhausting. Waiting for another appointment is exhausting.
I felt my rib pop this week and as soon as it did, I tried to recreate it. I think I finally found a way to show the popping so others can feel it, too.
So, I will be going back to the thoracic clinic this next Tuesday, my originally scheduled appointment that they tried to cancel. I tried to video it for Y’all, so maybe you can see it. I think it shows best toward the end.
I had to call the clinic receptionist and let her know that I was not canceling just because I had already been seen, that I felt the last appointment was not helpful to me and I was returning.
So that’s basically what I’ve been going through. That and working a lot.
And see, I had this blog somewhat ready to go, but I have more to add…
My Rheumatology appointment has been scheduled, to discuss my rib popping. I’ll have my repeat Thoracic appointment tomorrow and I’ll try to pop my ribs for them.
And then, this past Saturday, I got to visit the ER for the possible abscess.
I have noticed swelling in my rectal area, an abscess is beginning to show. After getting my rectal exam earlier in the month, and GI telling me to monitor it, I had to call my doctor’s personal cell that Saturday morning because my abscess was growing, and draining. EW.
My GI, Dr. S, told me to definitely visit the ER. So, to the ER I went.
At the ER, I was given another rectal exam, with instructions to see General Surgery for a consultation about removal or draining. I will see them later this week, for yet another rectal exam. Shew. I was also given culture tubes to get samples myself for testing.
I feel like every doctor in the building is getting a good look at my rectum. Every nurse, doctor and front desk person knows who I am these days. The nurses decided the abscess was the size of a large pearl, so they named it my Black Pearl. How funny!!!
They gave me medication, Clindamycin, Levaquin, and Lactobacillus, and told me to follow up with my GI, too. But, at least I got to get another bracelet to add to my collection.
Otherwise, for my Crohn’s disease, I feel like the medicine is working better than others, but I am still having issues, especially with the abscess popping up out of the blue.
My ganglion cyst, Lumpy, has made its 4th return, the Saga continues. After draining it and surgically removing the ganglion cyst twice this year, now it has returned. The plastic surgery doctor was baffled at the return of this cyst happening so often, she wanted another view of it with an MRI and X-rays.
I will see them again for a repeat appointment once those scans are done. My thumb has been getting numb, the feeling has not returned, so another surgery will probably hurt those nerves and regaining feeling even more.
And then, I have to mention that I turned 30, celebrating my birthday for two weeks! I am sure you have seen photos if you follow me on Facebook, but it was an absolute blast!! What a wonderful Funeral for My Youth! Haha
I’ve been working like crazy, fitting in time for friends and photoshoots and music as much as I can. I have been busy, busy, busy.
I am still writing for IBD News Today, so make sure you are checking out those columns. I try to be educational and I try to give my patient perspective. I am still serving Jury Duty, so that’s been interesting, and I have also been working a lot.
But I think I’ll stop here. It is a lot to take in and this post is already so behind and getting longer by the day…
I know I always say I’ll do better at posting, and I mean well, I just hate to rush things and I hate to leave things out.
For me, It Could Be Worse.
Thank you for reading, and for keeping up with My Crohn’s Journey. Please Like It Could Be Worse Blog on Facebook!
And as always, any information you’d like to offer up about Stelara 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:
Stelara Self-Injection #2 & Rib Pain
Lumpy, the Ganglion Cyst, a Trilogy
Stelara Self-Injection #1 | It Could Be Worse Blog
2 Year Anniversary of Crohn’s Diagnosis Day | It Could Be Worse Blog
Crohn’s Disease Essentials and Emergency Kits