A Look Into the Past...

(**Sorry this first post is kind of long to explain things**)
To start things off I figured we better take a look at my history and how things came around, so that you can see what's taken place to lead up to this point. So starting off....
In August of 2008, I was diagnosed with a rare collagen disease, Ehlers Danlos Syndrome. This diagnosis came after years of surgeries, ER visits, blood work, tests, doctors appointments, casts, and the list goes on! My mom told me that growing up I was always very flexible, but we never really thought anything of it. However, in 7th grade, in 2001, I hurt my ankle playing soccer--not doing anything major...the grass was wet, my ankle turned on its side, and I slid across the grass tearing tendons and things. Long story short, between 2001 and 2008 I had surgeries and injuries with my ankle, knee, shoulder, hips--tearing tendons, ligaments, labrums, joint capsules, etc..., dislocating the joints, and things...while doing things as simple as hitting a volleyball, stepping wrong, pulling a suitcase, and rolling over in bed! We kept asking the doctors what could be causing this--that I wasn't doing anything major to cause these injuries--and they would tell us that there wasn't any kind of disorder that could cause it, that it was just some "freak accidents." Yeah, "freak accidents" over and over?! I don't think so! So in 2008, after going to Colorado for a hip surgery (my hips both needed to be reconstructed due to the labrum being shredded, bones not fitting right, etc...), the surgeon that I met with looked at me and said I am pretty sure you have Ehlers Danlos Syndrome! (After watching me do my pre-op range of motion testing and they all looked at me in disbelief as my hips turned until they were almost out of place!) He set me up with a geneticist here in Utah, and I was officially diagnosed Ehlers Danlos Syndrome Type 3.
Ehlers Danlos Syndrome (EDS) has many different subtypes...as I stated previously, I was diagnosed with type 3 which is the most common of the subtypes; and then the geneticist informed me that, besides having the subtypes there are also different levels an individual can have it, and I am on the more severe end of the spectrum. EDS is a disease that affects the collagen in your body, so instead of my joints or different things staying within a certain range of motion and going back, as most peoples do, mine stretch until things come out of place, tear, or whatever they so choose (they tend to have a mind of their own ;) ). Collagen is all throughout your body--in your stomach, your intestines, your blood vessels, lining, your ligaments, and everywhere; due to this, EDS has caused me to have multiple other diagnoses as well, including: gastroparesis (the delayed emptying of your stomach...so basically my food takes longer to digest so I take medicine to help my stomach digest), I'll get bacterial overgrowth in my intestines (due to the food sitting longer since the collagen of my stomach and intestines has so much flexibility that it doesn't allow the food to move through), and postural orthostatic tachycardia syndrome/postural hypotenstion (POTS) (due to the collagen in my blood vessels, when I stand, my blood pressure drops and my heart rate will increase).
Well, speeding things up to this past CRAZY year....In December 2011, I went in for back surgery. I had what are called bilateral pars defects which are two fractures in my spine (one on each side of the vertebrae), they were in my low spine, and things were very hypermobile when I'd bend with those fractures. So the surgeon went in and put 4 screws and 2 rods in to hold everything in place! I spent a few days in the hospital, and then went to a transitional rehab center for about 5 1/2 weeks (until the end of January). I came home and did pretty good for awhile, but then I was getting pain going down my legs. After some testing, we found out that I had developed another rare condition (and even yet, out of the three types, I had the most uncommon) following my spine surgery...arachnoiditis.The type I have is where the nerves, in the level of where my surgery was (and for no known reason--the surgeon did everything perfectly and clear up to this day the fusion of the vertebrae are almost 100% healed and look PERFECT!!!) rather than running smoothly up and down, have stuck to the sides on the bones--causing pain and numbness from that level (about my hips) down to my toes, instability, and other issues. I was back in the hospital the end of February while we were working on figuring things out and doing countless treatments for this. We tried anti-inflammatories, remicade infusions, physical therapy, medications for nerve issues, steroids, etc...I was in the hospital for about a week, back in the rehab center for about 3 weeks, and then home again the end of March. Between April and the beginning of June I was home and in the hospital a couple more times as they tried to keep things managed and under control as best as they could. Then, the end of May/beginning of June I ended up in the ICU with adrenal insufficiency and a problem with a few of my medicines building up to toxic levels. So, after about a week in the hospital and back on steroids, I was able to come home.
Which, gets us FINALLY to this last week...About a week and a half ago I went in for an MRI of my knee. My knee had been hurting for a little while and with where the pain was, how it was hurting and everything and, due to my Ehlers Danlos, we were thinking it looked as if I may have torn my meniscus. I was really hoping it wasn't torn, but honestly now, I would have much rather torn it, had surgery, and been getting better, then ending up with what I found out! I got my MRI report back and it showed osteonecrosis in large areas and extensive of my tibia, femur, and patella! Osteonecrosis is where the blood supply of your bone is either temporarily or permanently cut off and the bone dies! I didn't know what to think! So I called my spine surgeon (he has become like my hero for helping me out with my health stuff--ALWAYS being there for me, coming to see me in the hospital even when I was in there for being sick and not my back--coming out to the rehab center to check on me so I wouldn't have to come into the hospital, doing research galore into finding out about my arachnoiditis and everything, and just truly caring!!!) to see what I should do and who I should see, he looked at my films, and called to let me know that it was extensive, he said that the osteonecrosis can be caused from the steroids that I'm on from being sick and that we needed to get me off of them, that we needed to get some more tests done, and that he was going to do some searching to find who the best doctor would be. He ordered a CT scan of my entire leg (to better see how long the lesions were on my tibia and femur), an entire-body bone scan (to check the other bones due to the steroids--I hoped it wouldn't be anywhere else), and called and talked to a doctor down in Salt Lake at the Huntsman Cancer Institute who deals with orthopedics and bone tumors (mine aren't tumors, but he specializes with bones which is what we obviously need). So I went in for my tests, and waited, not very patiently, for the results to come back; and they came back with what I was most scared of! The CT scan looked pretty good, however, as I sat on my bed with my mom next to me, I read the bone-scan report and just cried as I read the paragraph talking about how there was osteonecrosis in my ankles, knees, hips, shoulders, and elbows!!! My right knee, which is the knee I had the initial MRI on, is the worst, followed by my other knee, and then I don't know between my other joints. The doctor in Salt Lake told my doctor up here that we will look at the films and see if it, my knee (the tibia, patella, and femur), is graftable, if we have to do a total knee replacement, or what are options are; and then we will see about my other joints what we will do. So for now, after, needless to say, a very emotional week, we're just waiting to see the specialist down at the Huntsman on Sept. 10th, I'm in a wheelchair to keep the weight off my legs (because due to the osteonecrosis there is a risk of your bones collapsing) unless I absolutely have to get up then I use my walker, and I am just super blessed to have AMAZING family and friends who have been by my side through EVERYTHING!!!