(***First off, just a little side note (and I'll probably mention this for the first few posts so please just bear with me, but)...for those of you who have just logged into this blog, the first post I've written--if you'd like to scroll down--explains everything going on!***)
They say "When it rains it pours!" I'm sure we've all heard that expression, right?! Although this statement can be very true (that when one thing happens, at times another thing happens, and then another and another) but, to me, it sounds like such a negative thought and expression. Just think of this, what happens when it rains....isn't it fun to just dance in the rain? What about sitting inside curled in a blanket and watch the rain through the window just come down (while we're safe and protected from it)? Or the fact that the rain helps things grow--flowers, gardens? I agree with each of these thoughts as well!
I will fully and whole heartedly admit that I am so not optimistic all the time and I definitely have my break down moments!!! It helps me when I take a step back though and try to look at things differently, so I thought it would be helpful and beneficial for me to write this blog as well as to inform and keep everyone up to date. Yesterday and this morning I had a few of those "break down moments" and frustrations but there are always things--like with the rain statement above--that make me see things differently, and I'm so grateful for that! So here's the updated scoop and how this "when it rains it pours" theory ties into all of it!
We'll start out from Tuesday evening...Right now, I'm in a wheelchair the majority of the time unless I have to get up, I use my walker, or if I'm being stubborn and just "need" (my version of need--it's called 'tired of laying down and sitting down') to be up for a minute and I just hold onto things and walk a VERY short little distance. Well, Monday evening I decided I was going to hurry and take a quick shower (I usually will take a bath right now so that I can just lay down--not standing), and when I went to wash the bottom of one of my feet, I obviously was not thinking, lifted my foot up (thus putting all my weight down on my leg that's the worst), and pain ripped through around my knee!!! I hurried and got done so I could get it out and sit down, and I realized as I was done and just sitting there that my leg would not stop hurting, so I remained between my wheelchair and bed the rest of the night. My mom and I also had a discussion that night about school. I am currently taking 2 independent study classes, and then the new semester just started and I was registered for 2 online classes. Knowing that I was probably going to have to have surgery at least on my right knee and then not knowing what was going to happen for the rest of the joints, my mom was concerned that this many classes was not in the best interest for me. For those of you who don't know, I really enjoy school, and right now it's like a little get away for me too, so withdrawing from classes it especially hard for me! Needless to say, that night was a break-down moment! I sat and talked with my mom for awhile about things...how frustrated I was that doing things as simple as trying to shower and I hurt my joints, that I need to withdraw from classes and it will put me another year until I apply for grad school, how tired I get with using the wheelchair because I can do things so much faster without it, and I was just having a complaining night! My sweet mom though just sat and let me complain, she listened, and just agreed with me when I kept saying "this sucks!!!" I love her and don't know how I'd make this without her!
Wednesday, yesterday, came and the pain was still there, a tiny bit of range of motion was gone (really not too much, but I have excessive range of motion anyways so it didn't look like much), but I was having horrible pain up in my thigh, down my lower leg, and it was very tender to touch along the bones. My sweet sister, Jill, drove me up to school to go to a psi chi (honors psychology club) meeting, and so she pushed me inside and then the elevator was right there so I was just going to push myself to the elevator, to my meeting, and then just kind of around the building and hang out until my mom came to get me. (My family is SO SWEET to drive me around since I haven't been able to drive since like Jan/Feb!)
Well, after my meeting I pushed myself outside and sat under a tree to study for a little bit. I thought about pushing myself to the Student Services Bldg, but I looked at the hill and knew it wasn't happening--my arms were hurting and exhausted already! So while I was sitting under the tree this guy came up to me and asked if I'd been pushing myself around all day, I said yes, he asked where I was going, I mentioned that I thought about going to the Student Services Bldg, and he replied 'I'll push ya!' Are you serious?! This total stranger came up and offered to push me, how sweet is that?!!! Then, that night, a couple ladies from my church came over and brought me a fleece blanket that the women and young women in my ward had made! And today, my sweet Aunt Julie drove up from Salt Lake just to spend a few hours visiting with me and keeping me company! I just felt and feel so blessed and loved! All of these little tender mercies continually surrounding me!
So this is where we get to my saying at the beginning and how my whole 'theory' of it and how it all ties in! Rather than seeing it as: "When it rains it pours," which is definitely what I was seeing the night I just vented and complained to my mom...crying and being frustrated about I don't want to withdraw from classes, I'm tired of getting hurt and hurting more by doing something as simple as taking a shower, what if I go off the steroids and my adrenal glands have more problems, I'm tired of the steroids and all their oh so lovely side effects (the huge weight gain, blood sugar and blood pressure going up and down, the osteonecrosis now, and everything...although the steroids have allowed me to blame like everything on them! haha!), I'm tired of using a wheelchair, and all sorts of stuff! I know, I feel bad for my mom for having to listen to to me too; but she's SO WONDERFUL and just listens, agrees with me when I keep repeating the statement 'this sucks' or 'it's not fair,' and cries with me...I love my mom!!!
Instead, the rain is nice to watch, fun to dance in, and helps flowers to grow! The rain is obviously our trials, so think of all those good things that come from and during our trials! I've been blessed with COUNTLESS tender mercies!!! 1-The guy who stopped and pushed me to the Student Services Bldg, the people from my church who made the blanket and brought it to me, my Aunt Julie coming up, my family driving me all over, and my mom always being there for me...these (and many others) all teach me love, compassion, and service for others! 2-As I've gone through things my testimony of faith and prayer have been strengthened--I know that prayers are answered!!! 3-I'm realizing that my trials help to make me who I am today, that I'm stronger because of them, and that I wouldn't change that! 4-I am so truly blessed!!! I have a place to call home, indoor plumbing, heating and air conditioning, food on the table, the opportunity to further my education (even if it takes me extra time to get done), the religion I believe in, the health and strength I do have (I can still see, hear, talk, laugh, and do many things), and AMAZING family and friends!!!! As I've read your guys' comments that you had wrote on facebook and now on here, it brings to my tears to my eyes!!! I feel so loved, supported, your guys' strength, and I want you each to know how much it means to me....THANK YOU!!!
Thursday, August 30, 2012
Tuesday, August 28, 2012
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!!!
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!!!
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