I Am Not Crazy - It Was All Real

I grew up in a household where you couldn't be sick or injured unless it was something mom approved of and could use to her advantage. I first had joint issues at 17 but it wasn't bad just a knee injury that needed surgery due to chronic inflammation causing damage from arthritis in my knee. The doctor thought that arthritis was from having had surgery the previous year from a skiing accident. I was happy enough with that.

Back pain

I then hurt my back by pulling a muscle working in a nursing home about 8 months later. I went from occasional back pain to everyday pain that never stopped. I finally had to look at and was told I had one degenerating disk no big deal. I was 163 and the doc said if I lost about 30lbs everything would be fixed. Well, everything else in my life was because of weight so that was the cure. I did what I could to ignore the pain.

I had my first baby the next year and due to abuse from childhood put on 90lbs of weight. My knee has hurt on and off since surgery and now my back was hurting to where I barely made it through having a kid. I figured I had allowed myself to get fat and it was the payment for that choice and learned to ignore it. I can remember crying myself to sleep at night from the pain. Losing jobs because I just couldn't do the work. I finally decided to have my back looked at again and was told I now had two disks degenerating and one was bulging but again not abnormal for someone so large. I was 298. They gave me some meds and so I went on my way.

Symptoms and surgery

This is the turning point and when things really began so to speak. I had skin issues since I was about 12. Not psoriasis in a conventional way but now I look back and see I had it wick bad on my feet. The cracks and bleeding, super thick skin, and the flares of this. Anyway, at 27, I twisted my right ankle. It was bad. Heard a pop and pain in the Achilles. The orthopedist immediately ruled out rupture and diagnosed me with insertional tendinitis. I spent a year in a walking boot trying just about everything we could to get the inflammation down. Finally, he agreed to do surgery because I had a bone spur under my tendon that was shredding the tendon with micro-tears and this was never going to heal on its own. After surgery, it was amazing my right foot was better. Once I healed it was like a new foot and all the foot pain in that heel, I had pain in the heel for long prior to the twist but again fat feet were gone. I could exercise and I was so happy.

Bone spurs

We added another baby and moved away to Denver. I, unfortunately, twisted the right foot while slipping on ice. I was so blessed to meet the orthopedist I did and he becomes the person that finally ended this roller coaster. It had only been two years since the last time and this was no different. I had regrown the bone spur/calcification and it was pushing my tendon out as well as my hardware that was used the first time. My body had not absorbed it and made it part of my new heel. Surgery is bigger this time. more tendon was damaged and the heel needed more shaving. I healed well. One thing I noticed looking back was each time something happened like surgery, I had increased pain and needed more pain meds than others like me, I would be more tired than others, my hands would hurt, my back would hurt more, and in general I just never felt good. I now know these were flares caused by stress.

Chronic pain

At this point, I had enough with my weight as I still believed that would fix everything, even though this last surgeon told me don't be daft. It will help with stress but he didn't believe that was the root cause at all. I did weight loss surgery. The best choice ever even though, I can see it may have aggravated what was already there. I went from back pain that periodically got worse in certain times to everyday back pain again. I was chronically tired but I figured it was the price for not eating a ton of food. Dumb I know. Fast forward three more kids, another knee surgery for arthritis in my other knee now, and three degenerating disks plus a small tear in the disk, and arthritic changes in my hands but not to bad, and my brother dies. The stress from that last baby, NICI, and my brother dying three years ago tipped me from minor too full on. I all of a sudden had my blood pressure spike, so tired I couldn't speak sometimes, brain fog, weird skin on my hands and nails that have pitting and breaking in weird places like the middle of a nail, my feet for the first time in years became thick again and started cracking, the pain was every day to the point I went from some pain meds to daily medicine four times a day, and I can no longer work. I started seeking out doctors. Well, you were so fat for so long. Well, maybe your thyroid. Maybe you need to meditate. Well, you're not fat anymore so it's not all in your head but we don't know. Years of this and this past year and a half, I had enough. I had done some real work, healing from PTSD from abuse, I mean I did the work. IT WAS NOT IN MY HEAD! and I finally could say it.

Pain management with psoriatic arthritis

I found me a great pain management doc that redid all the work on my back and told me that this is osteoarthritis and facet disease as well as disk degeneration. He felt it was autoimmune and said you need a rheumatologist. I fell and broke my collar bone right at the end and needed more surgery and have now learned guess what it was part of PsA. the type of break I had. I went to the rheumatologist thinking finally. Nope, she said my blood work was too normal to have anything. Give it some time lets see what comes up. Then the ankle struck again but with no injury this time. The orthopedist upon hearing what I was looking at said, "I know what you have." He asked to see my hands and my foot sole. He listened to what had been going on. We went back over the nature of my Achilles. He asks, "do you know more than 80% of patients with PsA have insertional Achilles tendonitis? And you have enthesitis and that collarbone break was part of this too. You have psoriatic arthritis". I was normal. Not just that others were like me and dealing with this. He told me you go back to the rheumatologist and have her look at it. If she didn't see it I needed to go see someone else. To be honest, I had no idea my ankle, the enthesitis issues, the collar bone, my soles of my feet, and my nails even mattered, and when I had my intake appointment I hadn't thought to mention any of this.

Treatment for PsA

Went back and we are on Humira. I had to have surgery because I needed the tendon lengthened to relieve stress on my tendon and to shave a new calcification, but my hands are beginning to not hurt so much. I will be sewing for the first time in a year as soon as my fabric comes. I am not so tired all the time. My knees that were getting to where I couldn't walk are healing and not so bad. My back is still bad but I have things to try for that still. I am learning a new way to live including knowing I am allowed to rest. All my friends that walked away because I was just depressed and needed to get over it, were wrong.

Becoming my own advocate

And I am learning to make new friends that understand I may have to cancel last minute, and it's not because I don't care about them. I have had to learn that just because one doctor says no or doesn't see it doesn't mean take that. If you know your body and it is screaming something is wrong don't ignore it. We as humans as suffers of this disease do not deserve to live like this no matter what we have been through in life. Life can still be enjoyed with PsA but you have to be willing to relearn new ways and it is so worth it. Learn everything you can about your illness, become an expert in your illness and your symptoms as you may be the one that has to advocate.