i could start off my very first post by saying this is day 290 on crutches.
I could start off this post by saying I’ve been the victim of many different medical conditions in a short amount of time.
I could start off by saying how much pain I’m in every day, how when I walk up the steps most times I need to stop half way because I get exhausted, how I’m going to need a knee replacement in the near future or how I’m on medications that I’ll need to be on for the rest of my life.
Yes, I’ve been on crutches for a long time, and before that I was off and on them for 6 months, but I’m not a victim to my diagnoses. For a long time I felt depressed and anxious, like my life was the worst possible scenario ever. I’ve come a long way over the past year and a half and I owe it to a lot of things I’ve seen on other’s blogs, on AVN and PsA support group sites and my round table of healers. During my research I actively looked for personal blog sites where the writer had AVN of the knee. I was unable to come across many- I only found ONE. There are many blogs out there for PsA support, but I’d like to think that I could bring another positive spin on the disease.
What is AVN and PsA you are probably wondering – if you’re among the lucky ones that are not afflicted by these diseases.
AVN, Avascular Necrosis, is the term used when a part of your bone has died. Most commonly this occurs in the shoulder and hip, but also can occur in the knees and really anywhere else in your body that you have a bone! The main causes of AVN are alcoholism, heavy steroid use, deep sea diving, sickle cell disease or clotting disorders. I do not fall into any of these categories. What basically happened was that my femur bone had a totally random stroke like event occur. The blood supply was cut off in two parts of the bone and because your bones need blood to survive those two parts died. There is no way to revive the bone, once it’s dead it’s dead. My doctor described the consistency to me as being similar to that of a mushroom. Not stable, ‘squishy’ bone. There are many procedures out there that can help this. Because there are several different ways to treat it no one way is a sure fix. Usually if this happens in patients of an older age the doctor will do a hip or knee replacement. In my case, since I am 27, they’d like me to try to wait and see how my knee ends up feeling. I’ve had several other issues with my knee over the past year and a half (don’t you worry! I’ll get into these!) so right now the possibility of a knee replacement isn’t possible- but I’m hopeful that maybe in 2014 this may become a reality.
PsA, or Psoriatic Arthritis, is an inflammatory auto-immune disease which causes pain, swelling and/or stiffness in one or more joints, sausage-like swelling in the fingers or toes, pain around the feet and ankles, changes in your nails, and extreme exhaustion which doesn’t go away even with adequate rest. Many of the symptoms resemble rheumatoid arthritis and some of the treatment is actually the same as RA. Many of the patients afflicted with PsA also have psoriasis. I, fortunately, have been lucky enough not to have this symptom (knock on wood). This disease is very complicated and there are many different types of PsA, many different symptoms and many different treatments. There is A LOT I don’t know about PsA yet and my hope is through my blog I can explore and learn more and more about the disease and document how it has been affecting my life.
My mission for this site is to give comfort and information to others in a similar position. I have found that personal testaments have made it easier for me to cope and my hope is that my personal testaments can do the same for you! Like I said before, AVN of the knee blogs are few and far between. I want to put this information out there for those hobbling around on crutches, with canes, on bed rest, etc. to give hope and to be able to share experiences with one another. If you are an admin of an AVN of the knee blog or know of any please let me know! Same with PsA!! I’d love to have our sites link to each other so we can make one stop shopping for others like us!
My story isn’t your typical patient’s story. I’m also not your typical writer. My sister always gets on my case about using bad grammar, my mom is always spell checking my card site (an exciting way I use to keep my mind off of pain!), I loooooooove to elongate my words and I’m a mad texter so emoticons and abbreviations are just a way of life for me. I’m sure I’ll misspell words in my post. Sometimes you may read sentences and be like what the heck is she on (and the answer is A LOT- too much right now!) and I’m apologizing in advance. I didn’t start this site because I was a writing major who always wanted to blog- I’m starting this site to help others in the same situation as me.
I’m very open and will give you all the details about everything I’m going through. In addition to the AVN and PsA I’ve been dealing with I’ve also been suffering from depression and a rough patch of anxiety. I’ve kicked Complex Regional Pain Syndrome II (CRPS) of the knee, a Melanoma in Situ site on my stomach and some random tissue that decided to grow in my knee’s ASS! Along the way I’ve had some interesting things happen- like a 3D ‘eyeball’ that would pop out of the lateral part of my knee when I would straighten it. It was freaky! (I’ll post pix in a later post!)
One of the best things I’ve done for myself throughout this whole process was stumble upon Dr. Lissa Rankin’s book Mind Over Medicine. This book has 6 steps to help you write your own prescription. I wasn’t sure if I should buy it right off the bat, which is weird because I’m such an impulsive buyer. I watched Lissa’s Tedx talks (click here for Lissa’s press page!) and was immediately drawn in. I loved how she spoke, I loved how I listened to each word, I really started to believe in what she was saying. After I closed the youtube tab I immediately went to Amazon and purchased the book. About a week or 2 later I saw on Lissa’s Facebook page (which I HIGHLY recommend following) that she was offering a 40 day online course which would go through the book in detail. I just had to sign up! I’m still working through the course, but I’m well on my way to writing my personal prescription.
In the process of writing and carrying out my prescription I will blog about all the different treatments, pain techniques, stress relievers, doctors visits, etc that I embark on. My hope is that hearing my story will help you decide what you should try and not try with your treatment plan. And my hope is that hearing my story will give you HOPE!
When trying to decide on a title for my blog I spent about 3 hours one night going through Pinterest reading quotes to be inspired.Those quotes turned into a list of about 50 titles and eventually I decided I was most inspired by the quote ‘It’s just a bad day, NOT a bad LIFE’. I have good days, I have great days and I have bad days. I look at it as you can’t have the good and the great without having the bad. Just because you have a bad day doesn’t mean your life is bad. This has taken me a long time to grasp (and I’m still trying to continue to hold on).
With the support of you, my amazing support system, my facebook support groups and my doctors and healers I not only look at this blog as part of my recovery process, but as a vital part of my personal prescription!
So SHARE with others you know! SHARE in support groups, facebook groups, blogs & friends! SHARE with your doctors, therapists, and healers who most likely knows of others in the same situation.
COMMENT letting me know what YOU think, what YOU want to know and what YOU went or are going through. Let’s make this a community of empowered patients kicking our diseases butts one day at a time!
Wishing you a pain free day,