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I am beyond honored to receive one nomination. Let alone FOUR nominations for #WEGOHealthAwards2019. This year marks nominations for the THIRD YEAR in a row!

Endorsements are now open. I’d like to ask if I have influenced you, helped you or encouraged you, to please click that link below and help your girl out.

https://awards.wegohealth.com/nominees/13369

I could not do it without the support, friendship, information, and education that I have received from all of you.

. . . .

These awards seek to recognize Patient Leaders who are making an impact with their advocacy.

This year, I was not only nominated once, but for four categories:

– Best Kept Secret

– Patient Leader Hero

– Best in Show – Instagram

– Best in Show – Blog

Thank you for another WEGO Health Patient Leader Connection nomination! Very honored to be included with so many dedicated patients and professionals. Learn more & nominate today.

https://awards.wegohealth.com/nominees/13369

#crohns #itcouldbeworse

Previous Nominations:

WEGO Health Nomination 2017

Until next time, for me, It Could Be Worse.

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Thank you for reading, and for keeping up with My Crohn’s Journey. Please Like It Could Be Worse Blog on Facebook!

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Thoracic

Thoracic seems to be another clinic that I frequent. I have suffered from rib pain for about a year now. Sudden onset of pain, with two major areas of focus on my left side. We are not 100% certain that these pains are related or not.

Because there is so much to cover in the last few months, I am separating one long blog post into multiple postings. And, since my ribs and surgery had become a whole ordeal, it gets its own post about the events of that. There will be more postings within the next few days, this one just happens to be finished first.

Warning – there will be photos of my incision site and healing process.

As I have mentioned many, many times, I have wonky ribs.

The first problem, I have a single swollen rib on my side/back area. We think this is my 10th or 11th rib, with one area that is significantly larger than the rest that would get inflamed.

When I say inflamed, I mean it was one general rib, in one general area, that would swell and become painful to the touch. This one rib area was almost as if the cartilage at the end of one of my floating ribs was swelling or becoming irritated.

To help this, we had done a temporary nerve block, numbing the area for a small time. If you remember, we had discussed a neurectomy before the nerve block, but, after, my doctor was too ‘hesitant’ to do what we had discussed. I was referred to Rheumatology, given a rib binder, and told to wait a month and return. See One Step Forward, Two Steps Back.

When I returned, this appointment was a hot mess in waiting. I had arrived for a 9:45AM appointment, waited for over two hours before they told me I was actually rescheduled for 1PM, and even then I had to wait until after 2:30 to be seen.

And then…the doctor was still extremely hesitant about removing the problematic ribs and nerves, so he wanted to ‘discuss my problems with other surgeons’. This meant more waiting and another appointment scheduled. I was told to wait another two weeks and return. Why wasn’t this done during any of my week-long waits for these appointments? It just doesn’t make sense to me.

When I returned for the latest in my thoracic visits, I was told a neurectomy and rib resection was in the works. I was surprised and given another temporary intercostal nerve block, this time with Lidocaine and without a full on “surgery” planned.

The thoracic intern numbed me up as I was half-sitting, half-laying down with my shirt pulled up. I had my hands placed at the beginning and end of the specific rib swelling, giving her an idea of which rib and nerve area to target. The numbing portion of the procedure is the worst part, the lidocaine burns a little and I wasn’t completely numb before she attempted another needle insertion.

Moments later, I was numb.

They had me sit for a moment and then felt around on my rib area to confirm that this nerve block helps the feeling go away in this rib swelling, which it does. I was completely numb on that one targeted area, if only it helped the second issue.

The second issue, the rib popping sensation, I have in the front of my ribs below my breasts, it occurs more and more and more. One of my front ribs is rubbing up against another, moving forward and behind the rib above it, causing pain and a sickening feeling as it happens randomly as I move.

If I sit, I can feel it. If I turn my sides, I can feel it. I feel it driving, I feel it laughing, I feel it coughing or sneezing or bending over. The brace stabilized the area, but it does not take away the rib grinding sensation completely.

I have tried to research the hell out of this, and, to the best of my knowledge, it is called Slipping Rib Syndrome. With some research, it is in my opinion that this rib problem is also the culprit for problem one, as well. I have read that Slipping Rib Syndrom can lead to intercostal nerve problems, swelling and pain, which are exactly my current issues.

Now, Slipping Rib Syndrome (SRS) is usually only found by hook-maneuvering the ribs in the affected area, feeling for the movement and friction of the touching ribs. X-rays, MRI’s, ultrasounds, these are not necessarily the best for viewing SRS, and it may show absolutely nothing. So, I had all of these procedures done, potentially for nothing if I am correct. And I assure you, I am 99.9% sure I am. You can see my video of my own ribs here.

In researching this, a rib resection of the affected areas is usually the best plan of action. Funny, I have been suggesting this to the doctors since early May of last year, to which the doctors took as “asking for surgery” rather than me knowing what my body needs to get rid of the pain.

Lest they forget, I am the one living and breathing in this body. I know when something is wrong.

Now, I have been seeing the Thoracic clinic for over a year due to the two main issues with my left side rib and chest wall.

Remember, we did temporary nerve blocks to this area, and after a day of relief, we knew from the get-go that a neurectomy would help. But, things aren’t as simple as that.

After seeing the thoracic clinic and discussing how the nerve block worked for temporary relief, my surgeon was still hesitant, if you remember, and he wanted the second opinion from some of the other doctors I see, such as rheumatology.

After seeing rheumatology, and seeing the thoracic clinic numerous other times, wearing the rib binder, etc., I was still suffering from problems one and two. Even months later.

Problem two, that slipping rib in my front left side rib. Around my 9th or 10th rib, one rib ‘pops’ or rubs up against another rib above it. This sensation is extremely uncomfortable, with the popping becoming easier and easier to replicate and reproduce, usually to show others that I can INDEED feel the rib slipping.

Now, my thoracic surgeon refuses to acknowledge this issue, saying I have asymmetry in my costochondral and front rib area cartilage. The surgeon refuses to acknowledge that he can feel the popping sensation when I have showed it to him, when others I have shown can feel it as well.

So, after months and month of visits and nothing helping the problems, the neurectomy surgery was a go. No resection, just permanently cutting nerves.

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Since my last post, Two Months Time, it has roughly been around two and a half months, give or take a few days depending on when I finish this blog.

I’ve been so negligent, I feel like I can never get caught up, like I’m pulled a million different ways all at once. I add to these blogs, little by little, adding new information when I can, which makes these so long and hard to finish. Then there are photos, watermarking and cropping, and editing the whole post, etc. etc.

My last post updated you on my July and August, which couldn’t have been any busier, with September and the beginning of October following suit. Now, we are almost mid-November. Yikes.

My last blog discussed nerve blocks and a plethora of scans, appointment after appointment and my Stelara Self-Injection #3 (the one I have yet to write an individual blog post for, so I’ll get to that at some point with both Stelara Self-Injections #3 and #4!)

I had been dealing with an abscess and another Ganglion cyst in my left hand, and I seemed to be getting nowhere in my fight for the relief of this nerve pain and rib popping.

So far, since the last post, I have had so many more appointments, some with GI, some with primary care, and some with thoracic and rheumatology, plastics and neurology. I tell you, I live at the VA sometimes.
In my weeks since I have found that my abscess has not grown much, it gets swollen here and there. I had a general surgery consult for it, inspection and all, with a plan to go under anesthesia for an exam and possible fistulotomy.
Going into the ‘surgery’, I didn’t know what would happen until after I woke up. I didn’t even know my surgery time until the day before, I had to call them just to find out.

I was under the impression that this was going to be a worse experience than it turned out to be. I arrived at the VA that morning and I thought I was going to get to look forward to my first enema, complete with the nurse’s assistance. (Sarcasm, people). I was not looking forward to that, I even begged to do a bowel prep instead and those are the worst.

The surgeon did a rectal exam in an appointment beforehand and found the ‘black pearl’ – (the ER nurses named my abscess). It is about pearl sized and around 7 o’clock on my rectum.
The plan was to ‘go under’, let the surgeon inspect the abscess and look for the fistula, if there was one, and depending on the severity or problem found, that would decide whether they wanted to cut it open and seton the fistula or if they wanted to leave it alone. I was given a boxed enema and told to bring it with me on the day of the possible surgery.
To seton the abscess would mean to pretty much zip-tie the fistula, allowing it to drain and heal itself inside out. I was very nervous.
Now, they did not do this for my first fistulotomy and abscess surgeries, rather we just cut the abscess and allowed it to heal, then cut the fistula and repeated the healing process. 11 o’clock is pretty much gone from my bottom. It was a long 12 weeks of sitz baths and sitting on pillows.
The nurse couldn’t get my IV started the morning of, so I had to be poked twice. Luckily for me, I was the first ‘surgery’ scheduled for the day, and the nurse didn’t end up assisting me with the enema (she didn’t bring it up so neither did I), I was relieved to wake up with no incision.
Luckily, with the exam under anesthesia, EUA, the doctor found no major problem. My concern is that I did not get to point out the abscess location before I was given ‘happy juices’, and I was told that I was put on my stomach for the exam, which makes the abscess not very noticeable.
As always, after anesthesia, I try to nap.
Sadly, you almost get let down when they don’t ‘find something’ because finding something validates your invisible illness, but it is even worse when I felt the abscess that morning. I felt it yesterday. I can feel it today. The ER nurses could find it. My GI doctor, Dr. S, she felt it. The general surgeon there felt it previously. So? I get to just wait and see what happens with it.
I called the VA the next day, I asked to speak with someone about my concerns, but no one has returned my call.
Without the abscess to consider, I had thought my Crohn’s was getting ‘better’. I’m having less daily issues but I just can’t seem to shake certain symptoms, like pain or bathroom issues. I’m dealing with less but I don’t want any of it.
I still have not completed a blog specific to Stelara #3, so I plan to combine 3, 4, and, 5 for one post about everything I discuss.
I’ve felt worse here recently, with all of my problems coming back to life, with my painful eggshell days, cold-sweats and hot flashes, and even my eyes are more irritated. The abscess isn’t too happy either if I’m completely honest.
It is already time for my next injection this coming Monday, Stelara Self-Injection #5. I had tried to order it online with the VA like I normally do but it was not scheduled to ship until the 12th, the day my shot is due. I had to work it out with the VA for me to pick it up instead. I can tell a difference in my body in the days leading up to my shot, my body really needs it.

My ribs, well, I still don’t really have answers as to what’s wrong but we have a plan, finally. I have seen the Thoracic clinic a few times and I’ve left extremely upset, I mentioned that in my last blog. I was given a referral for rheumatology, for a second opinion, and then sent back to the thoracic clinic. I feel like I’ve been blown off and passed around to clinics.

Remember, there are two issues with my left side rib cage. Two areas, one in my lower back and the portion right below my breast. They get tender and swell, possibly cartilage swelling, Costochondritis.
I’ve been told that my rib cage is not symmetrical, that perhaps I was born this way. I don’t accept that.
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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.

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Three weeks have passed since my last blog post, May Delays, and I’ve suffered through some migraines, I’ve had my Stelara, and I’ve been extra busy here lately.

I’ve had a few doctors appointments for all of my ailments and I’ve got quite a few things scheduled, with appointments, scans, and, follow-ups.

Since May Delays, my Crohn’s disease has been hit or miss. I’ve had good days, bad days, painful days. I’ve taken so many stool samples to the VA lab and they’ve taken multiple blood tests.

For the Stelara, it was my second self-injection. I picked up my shot from the VA with my other medications, and while they filled the prescription, I had my blood drawn. Oddly, they had me do a urinalysis for a pregnancy test before this injection even though there is no chance I am pregnant; none whatsoever.

Before each infusion or injection, my GI care team orders liver and kidney tests, with the normal CBC (complete blood count), tests for inflammation, medication levels, bone marrow, etc. With biologic medications, it is important to monitor your body and its reactions. I’m on Imuran and Stelara, so every eight weeks I get blood drawn.

On injection day, I try to prepare myself for stabbing around mid-afternoon. I know I’ll be too anxious in the morning to do it first thing, so noon always seems fair but I never inject on time. I get too anxious and I know I’ll immediately feel nauseated.

I ice my stomach, not necessarily for pain but out of habit. The Stelara does not hurt, unlike the Humira and its unpleasantness. With seeing the full needle and having to take a minute to inject all of the medication, having numbed my stomach gives me some kind of piece of mind. You won’t feel the needle this way.

When I start to numb my skin, I make sure I have premeds, my Promethazine, Imitrex, and Benadryl. I do not like that experience side effects from most meds, so preparing before is a big deal for me. A migraine is one of the worst-case scenarios for me, once it hits I won’t be able to shake it, so I plan ahead.

I usually set out my Stelara beforehand, you want it room temperature but you don’t want it out too long. 30 minutes or so should suffice, just be careful with where you set it so that it doesn’t get broken or shaken. You do not want to shake or break the syringe, and you do not want any air bubbles in the medicine.

Once I’m ready to stab, I wash my hands and I sanitize my stomach. I buy boxes of alcohol swabs at Walgreen’s or wherever, I go through a lot of them.

Injecting and holding it in while the medication goes in is the hard part. You want to think That the medication goes in with one quick push of the injector, but it goes in slowly. You wanna inject at an angle, and you want to make sure you don’t bubble it under your skin, so rushing the medication is not an option.

You just kind of have to go slowly with the movements until all the medication is done and the needle plunger clicks into place and locks the mechanism closed.

I feel myself get nauseated every time I do this, taking that full minute, it feels like an hour of injecting. I try to make sure I’m not bubbling or pooling the Stelara under the skin, and I’m trying to make sure I’m focused and not light-headed at the same time.

I clean my injection site after and I use an emoji band-aid to cover it. The needle goes into the sharps container and I am finally finished.

Full Video:

The past few times I’ve injected, I’ve videotaped myself, as I’m sure you’ve possibly seen on Facebook, but once I clean up and get everything back to normal, I feel myself getting extremely, extremely nauseated and light-headed. (Link to Video)

After, I’ve just felt extremely tired again. This has been a consistent side effect for me, which isn’t the worst considering I have insomnia, so sleep is always welcome. I just get overwhelmingly exhausted and I cannot for the life of me keep my eyes open.

I slept until the early hours of the morning, I woke up a few times, but otherwise, I was pretty much symptom-free.

The next morning I got called from the VA, my doctors wanted more blood testing. I guess they had ordered tests for before the Stelara, but they wanted others to be done, too.

You can see in the second image about just how tired I am. That Stelara wears me out for days.

The weather started shifting the next couple days, so I can’t necessarily blame the Stelara or my own body, but I began getting migraines almost daily. I’ve worn my Gonzo glasses more this month than I ever have and I’ve even had to wear my dark sunglasses inside.

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