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I am 40, almost 41, and I live in pain and discomfort daily. I have had Fibromyalgia for over 20 years, PCOS for just as long and as the years go by my conditions continue to stack. When I was pregnant with my first child I was very excited and I felt I was ready to take on the world and adulthood. Then they discovered gestational diabetes. “Don’t worry, it will go away on its own after the baby is born”, they said.
During my pregnancy my Fibro flared its ugly head, I started to grow hair on my face and lose hair from my head in handfuls. The doctor at the time said it was perfectly normal and if I shaved it off like a man and wore a hat, everything would again be “normal” after the baby was born. Well now at 40 I realize that they were so terribly wrong. Nothing was ever “Normal” again. I’ve had 3 children, they are 19, 11, and 6. I shave my face like a man every single day of my life and shave my hair short because I am practically bald on top.
I am the type of person who loves to work, to be handy, labor and is proud of the work that I do. I hurt my back in my 20s, tore three disks. Took them over a year to believe me when I said the pain was real, and after therapists and psychologists and physical therapy and NO RELIEF, they did a dye test and discovered that indeed my disks were all torn and causing my pain. Treatment stopped and eventually I was told I just had to “live” with it, and I did. Then the Arthritis in my back started and any time the weather changed, there I was laid up in bed and in excruciating pain. No Relief.
After my second child I discovered, and a long day out cutting and splitting wood, my hands and fingers swelled up like sausages and I couldn’t put on my shoes or button my pants or even do self-care in the bathroom. Went to the doctor, lots of tests later and they discovered that in fact, I had RA.
THE DOCTOR PUT ME ON LOTS OF MEDS AND STEROIDS AND IMMUNE BLOCKERS.
Told me I needed to “suck it up” and do the med regimen no matter what. At the time I worked for a resort with tourists from all over the world and I would catch every cold, every illness that was coughed or sneezed or even touched in my direction. Having two young children at home, living remotely in a dry cabin without power and working full time I decided it was best for me to stop taking the meds for RA and ask for different solutions. There were “None” and the doctors blew me off once again.
I eventually had to quit my job, leave the home that I loved and move into town. Everything I did and wanted to do was now a challenge and I was treated like a drug addict whenever I requested anything stronger than a Tylenol. Long story short, I had my third baby, diabetes never went away, now I was suffering from disk degeneration, Fibro, type 2 diabetes, RA and depression and now Gastroparesis.
In 2017 I was rushed to Emergency with debilitating pain shooting down both legs. They informed me that I needed to have major back surgery right away. Why? Because I would develop bladder and bowel incontinence because the same 3 disks that had torn so many years ago had now herniated. My spine had degenerated to a point that it was cutting off my nerves. Scared of becoming incontinent and having no relief from this horrific pain, I agreed to surgery.
I told these doctors about my Fibro, I told them about everything, all my concerns about recovery. They didn’t care because I was paying cash and didn’t have insurance. They removed two of the three disks and took 3/4 of the spine around all three disks. Woke me from surgery and rushed me out of the surgery center and home. I could not walk, I could not move without screaming, I could not care for myself at all. The pain was so horrific I passed out on my kitchen floor, and my wife had to get help getting me to the emergency room once again.
The attending doctor laughed in my face, said my incision looked fine and that I needed to stop seeking for pain meds. I spent the next three months dependent on others, worse fibro flare of my life, worse RA of my life and the worst depression of my life. I begged my family to just let me die. They did not and almost a year later I can almost walk without my cane. My Gastroparesis is terrible and I’m eating almost all pureed foods and nutritional shakes. When my GP flares everything flares. I’m only 40, 19 days from being 41 and I feel that all battles are basically lost and I’m actually in my late 80s.
I have an amazing wife, beautiful loving amazing children, great supportive friends and a job that I can sorta do full time. Every day is a struggle, I can no longer make plans. I never know if I will be able to go to work today or tomorrow, but I still have dreams and I will live in my cabin again. I just have to learn how I can live this way with adjustments. It’s not a great way to feel or live but it’s what I’ve got and I won’t give up on myself just because the doctors have.