Tag Archives: autoimmune disorder

My deep dark painful secret

This year, I plan to work diligently to blog more, to write more, and to find my voice again. It’s been a rough couple of years in my world and it’s been rocked in quite a few different directions. 

I’m writing today to share with you one of the biggest way in which my world has been rocked in the past few months.

First, if you have followed my blog for any amount of time, you know that I found love in the summer of 2012. He still takes my breath away and is more than I could ever dream of having in my life. He and I truly are soul mates –we don’t just finish each other’s sentences, we steal each other’s thoughts.

In order to explain to you fully what’s going on with me, I kind of have to back up a little bit. And then jump forward, then back, etc. So hang on. This might get bumpy.

In the summer of ’95, I fell while working. I nailed the middle of my upper back. It hurt. A lot. To the point where I could barely move. But, I was young and naive so I just powered through it. I continued to have issues with upper back pain throughout college, particularly after a car accident. I saw a few doctors, including one who told me I was fine and there was nothing he could do for me –that I just needed to let it heal.

So…I accepted this “pain” as something I would just have to live with. Most of the time, I was fine. By this time though, I had developed a “tic” of popping my back and my neck. I pop my neck and my back every few seconds now, and it migrated to my shoulders eventually as well. These days, I am unable to sit still because I am constantly adjusting my body in search of the most comfortable position.

Then I had kids. While pregnant, I had severe issues with pelvic alignment. My pelvis popped out of alignment and would stay out of alignment nearly my entire first pregnancy because my doctor dismissed it as “normal pregnancy pain.” I had no choice but to accept this as he was pretty much the only OB in town. After birth, I felt better but still had back and neck issues, made much worse while my pelvis was out of alignment.

With each pregnancy, I continued to have pelvic issues. Although the OB’s for my second and third pregnancies did not dismiss it and I received physical therapy for the issues.

About a year after my third pregnancy, I decided I had to lose weight. I had ballooned up to 281 lbs and that was just not acceptable. I could barely stand up from a seated position and my feet felt like they were on fire all the time. I don’t even want to talk about my back – I was in constant pain.

So I watched what I ate and exercised – first on the Wii then out and about with walks, hikes, etc. I lost 50 lbs in six months.

Then I went through a divorce. Moved home with my parents. Worked hard to continue exercising but eventually, I became so depressed I stopped. Also – I injured my knee while riding the exercise bike and was forced to stop, scared to start-up again for fear of re-injury.

Fast forward to this past summer. I started to go to the gym with my boyfriend. I hit the pool –hard. Within just two months, I was up to swimming breaststroke a total of 120 minutes a day (twice a day). I felt AMAZING.

Then… I didn’t.

I was exhausted. Tired. To the point that I could barely keep my eyes open during the day. I slipped in and out of consciousness during the day and yet still slept soundly at night. My left arm wasn’t functioning properly and my eyesight was blurry when I woke up and for most of the day. The simple act of even walking from the bedroom to the bathroom wore me out before I even got out of bed to do it.

At first, we thought maybe it was PMS. I’ve had sheer exhaustion days right before Aunt Flo arrives — but then AF came and went and I was still exhausted.

I tried to swim again. I swam eight minutes before my head began to pound and my eyes felt like they were about to pop out of my skull. Defeated, I slunk from the pool, infuriated, confused, and extremely worried about myself.

We talked over the possibilities. Could it be related to diverticulitis? (I’d gone to the ER with a serious stomach pain issue earlier in the summer – we had since decided it had to be diverticulitis as it wasn’t gallbladder related and only happened when I ate nuts or seeds). No – because that wouldn’t explain the extreme fatigue and grogginess plus I didn’t have stomach pain.

What if it was … wait.. neck related? I decided, the weekend after my birthday, to go walk a 5k for Mental Health. IF it was neck related and not systemic, I wouldn’t be fatigued afterward as walking isn’t jarring on the neck, right?

I walked the 5k, no problem.

I started sleeping with a neck pillow that night, and felt slightly better the next day –almost no fatigue.

We made an appointment for me to see a doctor the following Monday. After sharing with her my entire story, she suspected that I had something called “Ankylosing Spondylitis.” She wanted to refer me for a blood test to check for the marker. Thing is, after some research, you can still have it EVEN if you don’t have the marker. I don’t have health insurance so I can’t afford expensive blood tests, particularly ones which may be inconclusive.

The more I read about AS, the more I am positive it is what is wrong with me.

Ankylosing Spondylitis is a form of arthritis which centers on the neck and the spine. It causes all sorts of issues similar to the ones I have experienced. Flares are exactly like the episode I had in September and the eyesight issues are a well known accompaniment. Ultimately, AS can be responsible for fused vertebrae.

For the most part, I’m doing okay. Sure, I have my bad days but for now, the good ones are outweighing them. But when I have a bad day, the pain and the pressure causes what’s referred to as a “brain fog” and I can’t think straight. I’m forgetful now. Sometimes downright stupid. I will talk and get words wrong or mispronounce them. Or I’ll completely forget what I was saying mid-sentence.

So if I tell you I’ll do something and I don’t follow through – it’s okay to push me or remind me. Because chances are I have genuinely forgotten as a result of all of this. It’s terribly frustrating and embarrassing.

Right now, as I sit here, typing this, I’m having to blink quite often because my vision sucks this morning (and it’s not due to bad eyesight, it’s the neck thing) and I’m also forcing myself to hyper-focus because I am in a bit of a fog today. I imagine it’ll clear by three or so – it typically takes all day.

I am waiting for a new swimsuit from Land’s End so I can get back in the pool and swim – it’s one of the few exercises which is known to help with AS. What’s most frustrating about it is that I can no longer sit or stand for extended periods. So my day is now a delicate balance of sitting, standing, and making sure I am not overexerting myself into a flare. It kinda sucks but..it is what it is.


So there it is. That’s what I am dealing with now, on a daily basis. I keep telling myself it could be worse. I could be unable to move at all or need to rely completely on someone (and some days – I do need my boyfriend to help me stand because this thing also affects knees and well – standing is pretty damn hard without knee power). For now – over the counter meds work. We recently purchased a new pillow for me and it has helped so much I haven’t had to take meds. I may need to take meds today though. And that’s okay.

I’m a survivor. I’ll survive this too.