Surgery, Procedures, Multiple Treatments, Oh My!
I can honestly say after 4 years of dealing with my AS diagnosis, I have become a guinea pig! And not the fluffy cute kind. The kind that feels locked in a small cage with no way out, and medications are experimented on me often.
From infusion therapy, to biologics, to anti-inflammatory meds, to steroids, and steroid injections, to muscle relaxers, to pain killers, to spinal cord stimulator trials, to painful injection procedures, to physical therapy, to massage therapy, to expensive sessions of acupuncture.
Then, the multiple trips to the ER to get pumped with what they call a "cocktail" that consist of morphine, an NSAID, a muscle relaxer, and a steroid because after all of that my symptoms are still not managed. So, it leads me to the ER multiple times a month because the pain becomes unbearable for one person to handle.
I just want a solution to my pain
And sometimes I was viewed as an addict who just wanted pain meds, when all I wanted was a long term solution to my pain. Not to be pumped with medications that are highly addicting that just wear off in a few hours. Not to mention the harmful side effects each of these medications can cause.
At the young age of 38 I have already underwent double jaw surgery due to jaw dysfunction from irreversible joint damage in my jaw, cardiac ablation because AS caused me to develop PVCs (premature ventricular contractions-- basically extra beats that interrupt my regular heart rhythm that causes a feeling of a fluttering or a skipped beat in my chest).
The procedure of a cardiac ablation was very awful. I was awake throughout most of the procedure so they could catch the extra beats and ablate them. Mine were very close to my artery which caused a longer procedure. My heart has not been the same since. Every so often I get an extra beat. It's not severe enough to go for another ablation, but it's very uncomfortable on top of dealing with costochondritis.
Every injection procedure has failed
Pain management has performed every possible injection procedure, and all failed my body leading me to try the spinal cord stimulator for 7 days which was yet another painful procedure. I can't count how many scars and bruises I developed all over my body from all of these procedures that are supposed to be helpful. It's safe to say that my body is tired, and I know this is just the beginning of my journey which is very scary to think about how much more of my body will be taken from me at my age.
At any age this isn't fun, but when you are young and just want to enjoy life as a young person should, it becomes very depressing at times, and you start to think how much more your body is going to suffer as time passes by. I don't want to live in fear for my future so I take one day at a time I educate myself as much as I can, I take good care of myself and I remember that life is still beautiful through all the pain, and I choose to live my best AS life!
How long was your longest flare?