Living with Ankylosing Spondylitis can be difficult but I manage one day at a time!
Yep, the spring of eternal hope and optimism hath run dry. Just as I was beginning to make the final ascent to health and wellness the Universe decided to slap me with another health challenge and this one is not pretty.
I had been doing well, getting stronger, starting to walk better, less stiffness and then last Wednesday I began having excruciating pain in my left shoulder. I’m thinking “damn I must have done something to cause some inflammation”. Around 10 pm I tried to go to bed but I couldn’t lie down. The pain was getting worse. Now it was shooting from my shoulder down my ribs and across my back. I spent the night trying to get comfortable enough to sleep in an upright position.
In the morning my breathing was getting worse and couldn’t catch my breath… I’m thinking this is one hell of a flare-up. I was finally able to get myself up and drive to the ER around mid-morning. I walked in the ER, thank goodness for small local ERs, and said “I can’t breathe”. I was immediately rushed to a cubby, hooked up to a cardiac monitor and suddenly the doc appeared. Amazing how quickly they get in to see you when you are the only one there for them to take care of.
I walked in thinking I had a massive flare-up, I never though there could be anything else wrong. The doc looked at me after poking and prodding and says “Let’s get blood work, but I think you have a blood clot!” A what? Why would I have a blood clot? I haven’t cut myself, haven’t coughed up any blood… I was confused. I know what a pulmonary embolism is and I don’t have any of the symptoms of a PE. The doc even said that I didn’t show the signs of “normal” blood clot but he wanted to make sure I didn’t have one. Then he went on to say he was going to check me for Lupus and any other “diseases” because of my AS. Wow a doc in the ER who knows about AS, amazing…
Blood was drawn, IV saline solution started and pain killer administered and 20 minutes later a solemn looking doc returns… “Well looks like we got us a blood clot but we need to do a CT scan to make sure”. I know the shock on my face was evident and he trying to make me feel better said “At least everything else is ok.” Really? I guess that means I don’t have Lupus or any other “diseases” to worry about. Wonderful.
I was wheeled off to radiology where I got my CT with contrast scan done and the lab techs were so cool they printed out a pretty picture of my lungs for the ER doc, guess there WAS something there! Back in my cubby the doc comes in and says “I’m no radiologist but I can even tell when something is not supposed to be there when it’s this big!” At that moment in time I broke down. Being in the ER by yourself is not comforting even if the staff is sitting there holding your hands.
The doc had to wait for the radiologist to call with the results but after looking at the nice picture I could even see the massive size. Now for the treatment… I had two options one go to the hospital and be admitted or go home and give myself shots two times a day at specific times. If I had gone to the larger ER they would have just admitted me, thank goodness I chose the smaller one.
While they were getting all my paperwork together I got the education on how to give myself Lovenox shots and where to give them. Normally I would say I couldn’t go through giving myself these shots but being a seasoned Humira injector I felt confident I could do this, but these shots come nowhere near the ease of a Humira pen. I needed 75 mg and the shots were preloaded for 80 mg so I had to squirt some out each time. I had to make sure I didn’t give a shot in the same place so they give you a diagram to follow. Then I had to take Coumadin each night until Monday when they did my first blood test to check my “stickiness” levels.
As I was leaving the ER I looked at the nurses who had stood by my side and said “At least I know I’m not crazy that there was something wrong” and one of the nurses replied “You’re not crazy but one hell of a tough lady to take that kind of pain.” What can one say to that?
I got through Thursday night mainly because of the painkiller they had given me in the ER. I still couldn’t lie down and had difficulty catching my breath. I was able to give myself the shot after numbing the spot with ice, but damn it hurt and immediately left a bruise. That night I barely slept and could only sleep propped up on pillows. The next day I had to get up and give myself another shot at 6 then got ready to go to work. I made it through most of the day but by 3 pm that painkiller began to wear off. I barely made it home. It felt just like it did when I had broken ribs before but more intense.
I had no sleep Friday and the Lortab wasn’t even touching the pain. I started taking some every hour just to get it built up in my body. Saturday and Sunday were not any better and the pain would just sit there like a log not deviating from its intended location. Monday I went and got my blood work done hoping and praying that my blood had thinned some. I really didn’t want to take any more of those shots. My stomach looked literally like a pin cushion with all the bruising. You could see where I had given myself each shot.
By Monday afternoon my personal doc calls and says “You can quit the Lovenox, prepare to take the Coumadin for at least 6 months and you need another blood test on Thursday and I will see you on Wednesday.” My blood didn’t thin one bit and she was giving it until Thursday to see if it would and if not would increase my dosage. On Wednesday she walked in the room looking like the ER doc did that first day. Walked over and hugged me, and said “I’m so sorry you have to go through all of this.” I could tell she was on the verge of tears.
When your doc is on the verge of tears it can’t be a good thing. She hadn’t received the radiology report just the CT scan but knew that the size of the clot was very worrisome. She started asking didn’t you feel anything, no pain in that area, your legs…. NO, NO, NO…. I never had any inclination that there was anything wrong. So how did I get this? Is all I wanted to know… Could be my hormones or the fact that AS has thickened my blood, they don’t have the answers.
So now what? Well take the medication, no strenuous activities for 6 months… no physical activities for 6 months… Well there goes my goal of being able to ski this winter and the other thing… the “Man” how’s he going to take it when I say I can’t do anything for 6 months… Doc’s words “screw him”…. I don’t think he is going to like that any better but when your doc says… “The last time I saw a clot this big, was on a guy who just died in front of me” you take them seriously.
I don’t have as much pain and my sleep is better. I need less pain killers and my breathing is getting easier. The clot could take 6-12 months to absorb into my body but I can’t take the chance of doing anything too strenuous as it could break off and go to my brain or heart. I wish I could say that this experience hasn’t depressed me and that I haven’t reached the end of my rope. I haven’t broken down and just cried which would probably do me some good. I don’t want to give up hope, that’s just who I am, but my hope and eternal optimism switch has turned itself off.
A detemined Spondy out to raise awareness for Ankylosing Spondylitis!
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I'm a journalist and author of 'Mostly Cloudy, With Some Bright Spells'. I live beside the seaside with some hideous illnesses (ulcerative colitis, ankylosing spondylitis, fibromyalgia, scoliosis and Crohn's disease) along with my French husband and our stupid cat. Despite being in pain 24/7 I'm a relatively cheerful, mentalistic sort.
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walking to raise awareness of ankylosing spondylitis