Spending QT with my Bed.

Spending QT with my Bed.

Happy New Year from all of us in our PJs... and no make up. It was a sober NYE (if you don't count all the meds I was on ha!)
Happy New Year from all of us in our PJs… and no make up. It was a sober NYE (if you don’t count all the meds I was on ha!)

After getting out of the hospital, my family and I celebrated a very low key New Years at home and then it began…


Laying in bed.

All day.

Having nothing to do.

But not caring and not wanting to do anything.

During the month of January we visited several orthopedics and specialists to try to figure out what to do about my AVN. Every time we’d go and see someone they’d be stunned by the size of my knee. The swelling had gone down significantly, but I was still getting a bad reaction from those who saw it. All of the doctors confirmed that whatever was blowing up my knee was not the AVN and it was something else. Before anyone would even start discussing options for the AVN I’d have to get whatever else was going on in check. No doctor would touch me.

We also had a follow up with the rheumatologist that I had the great fortune of meeting in the hospital. I feel so lucky to have found her- she’s so caring, so understanding and I feel has helped me so much. After all the tests she ran in the hospital she diagnosed me with Psoriatic Arthritis (PsA). She speculated that way back when my knee problems started was probably when the PsA first came out and then when into remission- which is not unusual for children. She said that when it goes into remission it usually comes back out again in the mid to late 20’s. BINGO! I was 27! She started me on methotrexate and my journey began with my official diagnosis of PsA.

In January I was also referred to a pain specialist who diagnosed me with complex regional pain syndrome II. Basically, in lay mans terms, my knee was having one big anxiety attack and the nerves were stuck in a continuous loop of pain. The way we would attack the CRPS  was with medication and nerve blocks. I started doing monthly nerve blocks in the hospital to try to ‘reset’ my nerves and added Neurotin to my pill box.

All throughout January to March I didn’t want to do anything at all. I didn’t feel like myself and I felt severely nervous when I would go places. In fact, there were a few instances where I felt like I was going to faint while I was out. I’ve always been a confident person and anxiety was something I’d never had to deal with before. It was frightening to me. I felt like I had no control of my own body. I would be feeling fine and as soon as I would start to get ready to leave my house my body would have a MAJOR meltdown. One of the worst experiences I had with it was when I had to attend the funeral of my boyfriend’s Grandmother. I’m a very emotional person and funerals always affect me, but as soon as I walked into the funeral home I started shaking so much I was finding it hard to walk. I became so light headed I thought that someone was going to be picking me up from the floor. The whole experience was such a blur. I felt horrible because Brad’s family was there and I didn’t want to come across as rude. After experiencing this I really had a hard time leaving my house because I feared it would happen again.

During one of my AVN specialist appointments the doctor asked me if I was having anxiety problems. He then informed me that patients who have CRPS II usually experience other nerve issues as well. Lucky for me I was definitely experiencing extreme anxiety – shaking, stomachaches, headaches, dizziness, negative thoughts- the works. I didn’t want to leave my basement, let alone my house! Getting a shower was even a huge task! I would need to sit down several times during the shower just to catch my breath and I immediately needed to lay down after I got out. If I was going somewhere I would make sure to shower the night before. When I had a doctor’s appointment I would need to start getting ready hours before and would try my best to mentally prepare for it… I was really really really struggling.

I was taking medications round the clock. My pill box was enormous and completely filled!
I was taking medications round the clock. My pill box was enormous and completely filled!

The part that frustrated me the most was the fact that my whole life I had gotten up in front of others to perform and never had anxiety. This was NOT me at all. Because of this anxiety, and the fact that I had nothing but pain and doctors appointments going on in my life, I fell into a dark depression. Depression isn’t the best for keeping relationships and soon not only was I depressed about my health conditions, but also depressed about relationships outside of my house (My family had to love me no matter what 😉 haha!). I was fighting with people I loved. I refused to go anywhere forcing others to have to come sit in my basement if they wanted to see me. Eventually those people started getting frustrated with me and that created a whole other issue for me to deal with. Not to mention that since I was depressed my reasoning skills weren’t really that sharp so I was quite…. well, I’ll say it – f*cked up. I really was. (After much self exploration, I realized I wasn’t supporting myself at that time. Read more about that here!)

To me my life really couldn’t get much worse. . .

It wasn’t just tough on me, but it was extremely tough on all my loved ones. Continue reading the story here.

If you’d like to know more about the medications I used for my psoriatic arthritis, click here.

Wishing You A Pain Free Day!