Tag Archives: Ankylosing Spondylitis

Owning My Pain

I had goals for today. They were sidetracked by housework which left me in a tremendous amount of pain. Then I discovered our ISP has some speed issues so instead of sitting down and resting or going to the gym to soak in the hot tub, I pushed myself to get things done and be ready for a tech to show up at any moment.

Of course, the tech did not show up until nearly 5pm.

I stood the entire time he was here, nearly 10 minutes, holding back tears the entire time. And then, I forced myself upstairs where I collapsed on the bed and proceeded to fold laundry. Why? Because folding laundry made me forget about the pain – it distracted me from the intense fire in my lower back. That’s how J found me when he arrived home not much after I sat down. He walked through our bedroom door, asked me how I was and all I could do was look at him with absolute pain and tears in my eyes.

He sprang into motion, put a SalonPas patch on my lower back and fixed me a drink. Then he helped me finish laundry, chiding me for twisting and lifting the laundry basket. He tucked me into bed, nudging pillows behind me and making sure I was properly supported. After awhile, (and after some Aleve finally), I fell asleep.

I’m sitting on the couch downstairs now and as long as I don’t move, I’m okay. Tomorrow is a new day and even if I have to crawl into the gym, I’m going to go sit in the hot tub.

I struggle with my emotions on days like today. I am stubborn and tend to push through pain. I do not accept “failure” well. This, this not being able to function as I should, is failure. Intellectually I know it is not but it feels like it. I live with a standard level of pain every day so when that pain level surges and affects me like this, it is incredibly difficult to deal with. I handle depression or mental health issues far better than this sort of thing. I know how to deal with those. I can still move around. But when this happens and I am relegated to bed? Just ugh.

Earlier this evening, as we were folding laundry together, I focused on the fact that we were together. I also focused on the sunset outside. It was gorgeous – a phenomenal combination of oranges, yellows, greys, and pinks which slid into vibrant purples, dark blues, and specks of magenta. Certainly one of the most beautiful sunsets I had seen in awhile and because of this intense pain, I had a front row seat.

It is a fight to focus on the positive instead of the pain so when I manage to do so, it is quite a victory. I talk myself into holding on until the next day, convincing myself I will feel better then which is usually the case…or at least has been thus far. I may need to take it easier than usual but I make it through.

The same holds true today. I just need to make it to bedtime. In the morning, a brand new (and better) day begins. Tomorrow, I will own the pain instead of the pain owning me.

A Tango With Pain

This morning began as all mornings usually do, with the promise of hope and accomplishment.

Then, I got out of bed.

I stretched, as we all do upon waking, and something in my right shoulder or back shifted out of place. I audibly gasped, and J asked me what was wrong. I told him I was fine, finished up in the bathroom, desperately trying not to scream as pain washed over me while I washed my hands.

I opened the door, hunched over, and made it to the bed, where I knelt down and rested my upper body on the mattress, head in my hands, my hair falling  down around my face. I tried to move so my hair would allow me to breathe but I was wildly unsuccessful. I stayed there for a short bit, until the pain eased enough to allow me to climb into bed. J moved the pillows out of the way for me. I attempted to do the Cobra Yoga position which will sometimes pop things back into place but all it did this time was steal my breath. I grabbed a pillow, rested my head on it, and that was that.

I was stuck in bed for awhile.

I made it downstairs after the pain subsided and managed to eat an English muffin along with my morning medication plus ibuprofen. We menu-planned as I sat, nearly immobile with fear on the couch, and decided to go get J’s van while I was feeling better. Somehow, I managed to drive my 5spd to the dealership and back home. It wasn’t that bad because I was sitting down and there was not a lot of sharp movement involved in driving.

Once home, as J ran errands, I decided to fix his daughter’s nightlight in her bathroom and that’s when my lower back decided to join the party. After I got the new bulb placed, I retreated to our bedroom, tossed two pillows in bed, grabbed my body pillow, and curled up with the two pillow behind me, and the body pillow intertwined with my body to prop me up. A neck pillow lay on top of my regular pillow. I was as cushioned as I was going to get.

J finally arrived back home and came upstairs right as I was uncontrollably drifting off to sleep. It was not my intention to fall asleep but the pain was so great I could do little more than sleep. I slept until shortly after 3. He brought me some cheese (I wasn’t very hungry nor was I interested in sitting up for a long period of time to eat), water, and some Aleve.

I tried to get up shortly after to use the restroom only to move horribly wrong and fall back onto the bed, utterly defeated, tears streaming down my face, terrified J would need to help me.

I’m stubborn, though, and I made it on my own.

Eventually I took a hot shower right as J & his daughter ran errands. It helped slightly but not enough to kill the pain. J came home with patches and a heating pad. I opted for the Capsacin patch which helped somewhat and allowed me to get a few things popped but as I sit here, now using the heating pad and finally on Tylenol Arthritis, the pain washes over me as if high tide were rolling in.

Pain is my nemesis but over the past couple of years, it has worsened immensely. I have a threshold of pain I live with on a daily basis but when things go above this threshold, I get bitchy. Today? Today I would qualify at triple my threshold. I’d rather be asleep, to be honest.

Tomorrow, my goal is to make it to the gym to sit in the hot tub for as long as I can tolerate it to help with this. I may swim, I haven’t decided on that yet.

Just like PPD, the pain has taught me to be patient with myself, to be willing to take care of myself, and to let others do things for me. For some reason, I am less willing to do these things with the pain than with the PPD which makes no sense at all because with the pain, I am physically incapable of doing all the things. Perhaps it is the frustration of having the capability suddenly snatched away which initiates the frustration, who knows.

Pain is a cruel mistress, y’all. May you never end up in a permanent tango with her.

A different kind of dark

Perinatal Mood & Anxiety Disorders carry with them their own kind of dark. It’s a loud dark for many, filled with noise, thoughts, and frustrations bouncing off the ceiling, like bats fleeing from a cave when their “radar” isn’t quite working. Instead of flying perfectly out into the night, they bounce off the walls and fall down. But they get up and try again. Why? Because out in the world is their food and they need to eat. So…they have to leave the cave.

Try, try, try, try again. It’s not how you fall that matters. It’s how you get up.

I’ve been in that cave.

I tried, tried, tried and tried again until I finally flew free into the night, the sweet smell of honeysuckle surrounding me as mists of fresh rain drenched my face. Freedom from that cave is a feeling I will never forget.

But now, I find myself in a different kind of cave.

A cave made of physical limitations instead of mental struggles. This is not a prison of my mind. It is a prison of my body. Sadly, sometimes, it is both.

Today has been particularly difficult.

The pain started last week while I was traveling. I drove nearly 1800 miles in 7 days. Slept in different beds, didn’t have Tylenol and Ibuprofen with me, and spent hours sitting in a car (at least 28 hours just traveling, that doesn’t include the time driving while at my destination.) Driving through snow, ice, near-tornado conditions (I left Georgia the morning of the Adairsville Tornado), more snow & blizzard conditions, etc. On top of just sitting, driving was also stressful because I had to be very mindful of the not-so-awesome weather around me.

Since I’ve been home, the pain has spiraled down, increasing. I can’t get ahead of it. I went back to swimming this week. I’ve managed 25 laps, skipping Monday because I was exhausted just trying to scrape ice off my car.

I fear another flare is on the way. I am hoping it’s not but I can see it, hovering around the corner, giggling excitedly with glee at the prospect of tackling me once I get close enough.

This kind of dark SUCKS.

It sucks because there’s nothing I can do to prevent it. I can swim, I can take meds, I can avoid a large amount of carbs, and still… BOOM. There it is, waiting to pounce.

Today’s time in the pool was rough. I only went because I hurt. I forced myself to get in the pool and start swimming. Halfway through my body decided to quit. So I forced it to swim the final laps. I’m sure I looked like Elaine trying to dance in the pool but I didn’t care, dammit. I was there to swim at least 10 laps and by JOVE I was gonna put in my 10 laps.

As I got out of the pool, I faltered. To grab my towel, my mind had to slowly instruct my arm to reach out – as if I were an infant just learning to grab a toy. Don’t even get me started on the holy mess that was me trying to dress myself after showering.

Days like today are disheartening. Days like today are when the tears threaten to fall and I get angry. Angry and frustrated because I am still young and my body shouldn’t be doing this to me yet. But it is and here I am, in the dark.

Know what I’m gonna do tomorrow?

The same thing as today.

Because I didn’t kick ass through two severe episodes of postpartum depression to learn how to roll over and give up. No sir.

I kicked ass through two severe episodes of postpartum depression to learn how to FIGHT BACK.

Tomorrow, the battle continues.

I will win, just like I did today, even if it means I don’t get to leave the cave just yet. As long as I’m moving forward and doing my best, I will be happy with any amount of progress.

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.

Exhales.

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.