When You Live With Pain

I have been diagnosed with spondyloarthritis. And i cannot sleep! Even though im on ambien for my insomnia, the pain is relentless and i get no more than a few hours of broken sleep a night. I'm starting to get beyond frustrated with the fact my meds havent been preauthorized yet and my dr won't call me back.

When i saw him the 1st time, he asked my pain level. I told him a 10 because it was. I could barely move, walk, sit. I cant even bend over. He said no a 10 means you wouldnt be sitting here talking to me right now.

Hold on. Let me tell you something! For over a decade, i have been poked and prodded, been through chemo, a stem cell transplant, every test imaginable, felt like i was giving birth to my intestines 15-25 times a day, was malnourished, had multiple picc lines, almost died twice, had surgery, have given my self injections for years, broken multiple bones, had my bones drilled in to 3 times and God knows what else. I am not a stranger to pain. Just because you can't read it on my face, doesn't mean it doesn't exist. It just means I've been through Hell already so I know how to walk through fire.

Please don't underestimate my pain, based on my facial expressions.  You haven't live through what I have.

Cars and Couches

I have a Saturn car and it has a couple recalls so I took it to be fixed today. They told me 2 hours. And even told me to come back 30min after that to be sure they were done. So I came back...3 hrs later. Guess what....i sat there for 2.5 more hours!!! I was soooo irritated! Especially since I was supposed to get a new tire on my car and pick up a new recliner today.

Well i made it time for the recliner but the tire will have to wait. I hate it because the tire is so bare it's showing wires. Needless to say, I wasn't a happy girl today.

However, im relaxing in my wonderful new, oversized fluffy recliner with my kitties and it's just the stress reliever I needed!

My Back

Omg my back is killing me. I keep trying to work out but it's making my back so much worse. It's hard because I want to lose weight so badly and taking any break affects my self esteem. But i can't make my arthritis worse either. I have to call my doctor...again...about my medicine. Im going to talk to scheduling and make them leave a message because i left a voicemail on the nurse and doctor line almost 2 weeks ago and no call back yet. Like im not in excruciating pain smh.

Spondyloarthritis

So i have been having some serious back pain on top of my normal joint pain so I went to see my rheumatologist. He diagnosed me with spondyloarthritis. That is basically spinal arthritis. Im going to be giving myself shots twice a week of Acthar. I'm waiting for insurance approval now....ugh! I'll keep you posted!

Blogger App Back!

Finally got the blogger app back up and working! So expect updates!!

My 4th Re-Birthday

Today is the 4 year anniversary of my stem cell transplant! Happy 2nd birthday to me! Like a 4 year old in a 29 year old's body! Lol. It's been a long journey but I have been so blessed. Before my transplant, I wasn't going to live another year or 2. I was severely malnourished and had been bleeding internally for years and years. I wasn't responding to anything, getting worse every day. I could barely walk because of the pain. I was running 104 degree fevers every day. Surgery wouldn't have helped. Just as my doctors were throwing their hands up, I did my own research and found the stem cell transplant study at Northwestern Hospital...over 600 miles from home. I was there 9 months later. My sister was a perfect match and I took my stem cells well! Chemo was exhausting. I was so weak I couldn't lift a fork to feed myself. But after 28 days, I was finally able to go home and start my recovery! I have good days and bad days but I am so much better than before! I am so thankful! If I had the choice, I would do it all over again!

Stupid Blogger App

My blogger app has messed up and locked me out..AGAIN! So that's why I haven't been posting. I'm going to try to export my blog to another site.