Guess what?
Oh I’m not really going to make you guess. There is a really simple reason why I’ve been feeling like giant bag of crapola these last few weeks. As it turns out, the answer is quite simple. I have shingles. The funny part of the story is how I finally came around to knowing I had shingles and that’s what we’ll focus on here.
So rewind to last week, Thursday was the day I had to get myself to work to spend time with my CEO and attend a dinner with some very important clients. I had to ask a co-worker to meet me at the valet, walk me in the building etc. I chose a lame outfit that involved jeans and I hadn’t worn jeans in a very long time because thanks to my last 18 months of high-dose steroids and minimal activity, I’ve put on a few pounds. Good times. But yes, I wore jeans to the dinner.
The jeans annoyed me all night. They were new jeans, you see, and apparently now the rage in denim is high-waisted mom jeans. I am not a tall person. I am also quite short waisted so these jeans pretty much came up way too high on my stomach than I am used to from the years gone by when I wore jeans fairly regularly. I hated these jeans a lot.Who wants jeans that come up so high they basically can be tucked into your bra? WHO thought this was a good idea? But I was late and they counted as clothing so I left with the horrid jeans on my body because changing them would have taken too much precious energy.
As you know, I got through the dinner, got help with cat duties when I got home and went to bed after throwing those damn jeans on top of my dresser with a note to self to give them to my much taller and more high-waist jeans friendly sister.
As I lay in bed I felt this weird stabbing pain in my left side at just a few inches above my waist. After laying there for a while in bed in stabby pain, I dragged myself up and went to my dressing room to look at my stomach in the mirror. No. I don’t usually look at my stomach in the mirror. Who does that? It’s horrifying. But I did it and discovered that I had some kind of weird rash. It hurt. And I looked over at the damn jeans and thought to myself, “I gave myself a stomach rash from being too fat to wear my fucking jeans. That’s just perfect.” I poured some hydrogen peroxide on the rash and went back to bed.
In bed, I start having pain in weird places but just on my left side. My upper back on the left side felt like I was laying on an lacrosse ball. My left hand was tingling. I just assume this is more of my MS acting up as it has been since my infusion on April 23. Nothing to worry about but super annoying.
Friday was a lost day. I felt so weak I could barely make it up and down the steps from my bed to my living area to my litter boxes and back. I chalk all of this up to pushing myself too hard last week and probably wearing myself out. I felt so off balance I could fall over at any moment. I was desperately hanging on to Stanly (my cane) as if my life depended on it but to be honest, I mostly just stayed home because I felt that bad. The weakness was overwhelming. I had to lift my legs with my arms to get pants on (even pajamas). I kept feeling like my legs were going to go out from under me.
I rallied and made it my sister’s house for Mother’s Day brunch and actually took a shower before I went but that shower was weird. I couldn’t lift my legs to shave them so I had to sit down outside the shower to shave my legs. My arms felt weak washing my ten pieces of hair. Showering is never an enjoyable, relaxing ritual for me anymore but it’s not usually all that bad. This shower was next level bad.
I gently cleaned my wounded stomach, again cursing myself in my head for giving myself an actual injury from having too much belly to comfortably wear jeans. I doused the rash in hydrogen peroxide again after the shower because it started to look kind of angry. Possibly infected?
Great. I get to tell The Great Scott that my fat stomach gave me a wound from wearing jeans and then I got it infected and ruined my body for any normal movement at all because infection is going to mess up my MS symptoms (I’ve been told over and over again). How embarrassing. He would gloat and remind me about that 800-calorie-a-day liquid diet he wanted me on.
I forced myself to do laundry on Sunday night because I had very little of my favorite things (black yoga pants and tank tops, and pajamas) clean, and it was a necessity. But the laundry literally almost killed me. Steps are usually hard for me, again, but not this hard. I felt like I was going to die after one load. By the time I was done, I had to ask my nephew to come over and carry my clean clothes upstairs for me because I was so useless I could barely make it up to my bed.
Oh. And my belly wound now felt like it was stabbing me in the stomach with random knives. I hit the CBD extra heavy. I went to bed again cursing myself for being too fat to wear normal clothes thinking about how now I’m going to have to get another speech from TGS about how I need to drink less than 800 calories a day and lose some weight stat. I slept horribly because my entire body hurt, even places where I never usually hurt.
I woke up the next morning to a Facebook message from my MS-friends we lovingly refer to as The Three Amigos. This is usually a daily thing. We check in, we see how we’re feeling…we offer each other support, advice or just funny GIFs to lighten the mood that MS puts us in for one reason or another. Eventually, later that day when I started to feel even worse, continued to have stabbing pain in my stomach near my rash, I reached out to the girls once again to ask them what they thought about my rash. Yes. I took a picture of my stomach and sent it to these unsuspecting innocents who never asked me to send nudes.
“You need to get to MedExpress, buddy.” That was the gist of the response from both MS amigos who are much more experienced in this disease than I am. Around the same time, I sent the same picture (completely not asked for I should note) to my other MS online friend, my dear friend Jo(da) who is a font of MS knowledge just like the Amigos.
Joda takes one look at the wound I thought was caused by carrying a few extra pounds and wearing ill-fitting jeans and tells me I should get to urgent care. It looks like shingles. I google “shingles” and I get this:
This looks a lot like my belly rash and it’s in almost the exact location where my rash lives. It was now after 7Pm and MedExpress closed at 8PM but I hobbled to my car on the weakest legs ever and got myself there. The doctor took one look at my rash and said, “You have shingles. Here’s a scrip for antivirals.” And off I went to procure said antivirals at my local supermarket pharmacy that is open until 9PM. I just made it.
The ridiculous part of the story is that I thought I had given myself contact dermatitis from being too fat to wear my damn jeans when in fact I was having a straight up medical issue that was indeed making my life miserable and messing with my MS-riddled body even more than the MS does on its own.
I mean, I waited five whole days before seeking medical treatment because I was sure I deserved this rash for the crime of putting on a few extra pounds. I never even thought my immuno-suppressed condition could lead to legitimate health issues that would require prompt medical attention. I mean, don’t google “MS and Shingles” people. The word “death” comes up more than one time.
I’ve decided since then that I am really, really bad at having this disease. I ignore things that shouldn’t be ignored. I wait when I shouldn’t. I try to pretend I’m just like you! It’s just a rash and I can wait it out, but I’m not just like you. Well, maybe I am if you are new to having MS or if you’re not new to having MS and you’re over there shaking your head thinking, “Good lord Bethybright, get with the program you have a damn disease! Take it seriously!”
I do see TGS on Friday afternoon. I’m sure we will discuss my shingles then and other things that I’m sure I will find annoying. I’m wondering if anyone will acknowledge the email I sent to him or the telephone message I left for him yesterday, too, because so far I’ve gotten a big fat nothing.
I will make my request for my medical records that I need to gather for the nice folks at The Cleveland Clinic.
And, I will stop blaming medical conditions on belly fat and I will stop sending unsolicited pics of my diseased stomach to unsuspecting friends. I mean, nobody needs that shit. Nobody.
midgesms
May 16, 2018 11:50 pmBeth! Shingles! Holy shit.. blaming yourself with those F’ing jeans and it was shingles the whole time .. damnit! How are you feeling ? I hope you’ve found some relief by now. I had shingles years ago & it was a bitch .. literally. Take time to pamper yourself, Jesus. You deserve it xx
Maureen O’Brien
May 17, 2018 12:20 pmI wish you the best of luck in your decision to go to the Cleveland Clinic. You certainly have given this decision serious thought.
Keep up your fighting spirit!
bethnigro0212@gmail.com
May 17, 2018 4:00 pmThanks Maureen! I am trying my best to keep a good attitude through all of this but I’d be a liar if I didn’t admit that all of this craziness is starting to get the better of me. I’m really trying hard to stay positive. Everyone out there supporting me definitely helps! So thank you for your kind words. I definitely need them to help me stay focused. I hope you and David are both well!! ❤️
Beth Michaels
May 17, 2018 7:19 pmHope you find some answers at Cleveland at get some relief. Those people are amazing and very thorough. Husband was treated there for a different issue (than yours) a few years ago. One tip, Cleveland Clinic is vast, but everyone from the greeters to janitors to doctors to other patients will stop you to ask if you need directions. I hope someine will be going with you and you will have a wheelchair. Good luck!
bethnigro0212@gmail.com
May 17, 2018 7:22 pmThanks Beth! I am doing the initial consultation remotely. They have a system for long distance evaluation for second opinions. It’s an out of pocket cost not covered by insurance but I’m willing to spend the cash to get some idea of what I might want to do differently or whether my care is adequate as is. It’s all so confusing! But I appreciate any and all wishes for luck. 😉
Positively Alyssa
May 17, 2018 7:32 pmI wish you the best luck possible with the Cleveland Clinic! I am so sorry you went through such hell with all this. I have learned over the years that anytime you Google something or read anything at all on WebMD, it always leads to death! I do not know why they publish things so disturbing, it is pretty mean!! I hope this weekend is better for you and you get LOTS of rest!!! Sending you love, luck and comfort! You have a pretty amazing and strong attitude towards everything, which you should always hold on to!!
bethnigro0212@gmail.com
May 17, 2018 8:08 pmThanks Alyssa! I’m sure trying to remain positive but this disease is testing me lately. I won’t let it get the best of me…but this is ridiculous. 😉
Positively Alyssa
May 17, 2018 8:11 pmSadly, I understand way too much about it. It isn’t easy to stay positive, but we won’t let this irritating illness defeat us♡! I am thinking about you and sending you positive and loving vibes ♡
bethnigro0212@gmail.com
May 18, 2018 12:14 pmSending those vibes right back to you! 🙂
Nancy
May 18, 2018 7:59 pmI have a “kissing cousin” of MS, fibromyalgia. I learned a long time ago that I have to keep pushing and learning about my disease and what is “normal” for it and what is “not normal.” Some docs are not going to give you information or share things with you because of their own prejudices. Other times, doctors just don’t know what is out there when it comes to these diseases. Dental problems is a big one due to dry mouth in fibro patients as well as oversensitivity. I have to explain it with every new hygienist I have. Trust your Amigos and The Cleveland Clinic, but get on the internet and start learning. There are some wonderful advances in MS treatments now. I can tell you that there is hope!
bethnigro0212@gmail.com
May 18, 2018 8:05 pmI know we have much in common between MS and fibromyalgia. And you are 100% on target. I feel researching my disease and potential treatments is a second job, but it’s my most important job so I keep at it. I wish the best for you too in your treatment! 🙂