So I know some of this late news, but I've been slacking on trying to keep this thing updated--too much stuff going on. But, I was supposed to have my surgery on my hip done in Colorado on Oct. 21st. Well,the week before the scheduled surgery, I got a phone call from the doctor's office and they said that we needed to postpone the surgery.
The problem came down to the fact that we haven't been able to run all tests needed to check for the possible adrenal insufficiency, pituitary insufficiency, or thyroid insufficiency. So, as these could all be very dangerous--even fatal--with surgery...in not knowing for sure what we were going in with, the surgery was postponed until we can do the further testing needed.
So, as of now, we had to taper me off the steroid medications and then stay off of them for a few weeks, and finally, on Nov. 19th, I'll go have all my testing done for those things. Then, depending on the results and everything, we'll schedule the surgery.
Friday, October 30, 2009
Tuesday, October 20, 2009
Trip to Seattle...
On October 5th my mom and I flew out to Seattle, WA for a doctor's appointment. This appointment was one we--myself, my family, and all my doctors--have been waiting for and hoping to find answers! This particular doctor is a medical genetics specialist, does testing for ehlers danlos, and is doing research on ehlers danlos. So, this was going to be a big appointment! We figured that he'd be able to do any other testing for other subtypes of ehlers danlos if he thought I may have it, that he'd be able to tell us more about ehlers danlos, and, most of all, that he'd be able to give us some ideas on what to do (especially where my joints seem to be getting so bad so rapidly), what to expect, and help us have some more insight to what is going on with my body.
Well, I think--actually I don't think the correct word is think...it's more like I know--that I got my hopes a little too high because it definitely wasn't what I planned on having happen or what I hoped to hear. In summary, this is basically what the doctor said:
I definitely do have ehlers danlos--the hypermobility type--and it's effecting every single one of my joints (from my head down to my toes). He said he doesn't like to really put people into particular groups, because just like with my ehlers danlos hypermobility, there can be so many different levels of severity--for some people it may just effect their smaller joints more or there larger joints and for some it might just be kind of looser, but he said with me, for example, it's effecting all of the joints. He also said, though, that I have something else going on as well, but the problem is he doesn't know what it is, how to test for it, or what to do. The problem is that not only are my joints unstable (with the ehlers danlos), but when my joints come out my tendons, ligaments, cartilage, and everything ruptures. Most people, he said, with ehlers danlos, when their joints sublux or dislocate it may rupture the surrounding structures once in awhile but mostly they just stretch out (or one joint may rupture the surrounding structures at times but most of the other joints just stretch things out). Anyways...That is not the case with me--for example, just my left hip capsule has torn open about 3 times in the last year! Things tear constantly and easily! Also, when we asked if all of these other health problems that I've been struggling with--the possible adrenal and/or pituitary and/or thyroid insufficiency, possible pseudotumor cerebri, gastrointestinal problems, etc...--are related to the ehlers danlos, the answer was 'no'!
In the end, it just basically came down to these facts, I have the hypermobility type of ehlers danlos, something else is going on but they don't know what it is, I'm already doing everything possible that they know of to help my ehlers danlos, there's nothing else we can do, and I just need to be really careful, LISTEN to my body (when I start getting tired, stop and rest), and try to do some strengthening to help try and let the muscles help stabilize my joints (although in strengthening, I need to be careful so as to not let my joints come out while strengthening).
Anyways...needless to say, I was a bit disappointed after my appointment and having gotten my hopes that this doctor would have answers and be able to help me get/feel better! I cried and sometimes still do...I have good days and bad days! It's just frustrating to wake up some days (today for example), wake up in pain, take my medicine, lay in bed all day, the pain won't go away, I don't know what to do, the doctors don't know what to do, and it's hard! But, between my family, friends, and the Gospel in my life, I know that I can make it through anything!
Finally....My wonderful mom helped to make this trip still very fun and exciting! Since we had lots of other time in our 2 1/2 days besides my doctor's appointment, we went out and had fun! We went to the Space Needle, Pike's Market, to the shops along the pier, to the Old Spaghetti Factory, to two awesome museums--the Science Fiction Museum and the Experience Music Project--to the LDS Seattle Temple, and just sightseeing! It was great!!!
Well, I think--actually I don't think the correct word is think...it's more like I know--that I got my hopes a little too high because it definitely wasn't what I planned on having happen or what I hoped to hear. In summary, this is basically what the doctor said:
I definitely do have ehlers danlos--the hypermobility type--and it's effecting every single one of my joints (from my head down to my toes). He said he doesn't like to really put people into particular groups, because just like with my ehlers danlos hypermobility, there can be so many different levels of severity--for some people it may just effect their smaller joints more or there larger joints and for some it might just be kind of looser, but he said with me, for example, it's effecting all of the joints. He also said, though, that I have something else going on as well, but the problem is he doesn't know what it is, how to test for it, or what to do. The problem is that not only are my joints unstable (with the ehlers danlos), but when my joints come out my tendons, ligaments, cartilage, and everything ruptures. Most people, he said, with ehlers danlos, when their joints sublux or dislocate it may rupture the surrounding structures once in awhile but mostly they just stretch out (or one joint may rupture the surrounding structures at times but most of the other joints just stretch things out). Anyways...That is not the case with me--for example, just my left hip capsule has torn open about 3 times in the last year! Things tear constantly and easily! Also, when we asked if all of these other health problems that I've been struggling with--the possible adrenal and/or pituitary and/or thyroid insufficiency, possible pseudotumor cerebri, gastrointestinal problems, etc...--are related to the ehlers danlos, the answer was 'no'!
In the end, it just basically came down to these facts, I have the hypermobility type of ehlers danlos, something else is going on but they don't know what it is, I'm already doing everything possible that they know of to help my ehlers danlos, there's nothing else we can do, and I just need to be really careful, LISTEN to my body (when I start getting tired, stop and rest), and try to do some strengthening to help try and let the muscles help stabilize my joints (although in strengthening, I need to be careful so as to not let my joints come out while strengthening).
Anyways...needless to say, I was a bit disappointed after my appointment and having gotten my hopes that this doctor would have answers and be able to help me get/feel better! I cried and sometimes still do...I have good days and bad days! It's just frustrating to wake up some days (today for example), wake up in pain, take my medicine, lay in bed all day, the pain won't go away, I don't know what to do, the doctors don't know what to do, and it's hard! But, between my family, friends, and the Gospel in my life, I know that I can make it through anything!
Finally....My wonderful mom helped to make this trip still very fun and exciting! Since we had lots of other time in our 2 1/2 days besides my doctor's appointment, we went out and had fun! We went to the Space Needle, Pike's Market, to the shops along the pier, to the Old Spaghetti Factory, to two awesome museums--the Science Fiction Museum and the Experience Music Project--to the LDS Seattle Temple, and just sightseeing! It was great!!!
It's Been Awhile...
Sorry it's been awhile since I've posted...SO much has been going on and has happened. So, rather than have just one HUGE post, I'll make a few different posts that will explain the various things. I don't know if I'll get them all done today, but I will definitely catch you up to date over the next couple days. Hope you are each doing well!
Monday, September 21, 2009
Surgery...
So I just thought I'd give a quick update/info post. My nurse from my doctor's office in Colorado (the surgeon who works with my hips) just called today, and she talked with my doctor about how I'm feeling, my MRI, and things going on and he said that I'm going to need to have surgery again! :'( She said that he's going to go in and he'll drain it (because I needed to have that procedure done anyways), but than for the big surgery part, he'll have to take out part of my IT band and he's going to use it to create a new hip capsule.
I had a similar type of thing done on my right hip, where he took part of the IT band and created a new labrum. So, that's what they'll have to do for my left hip, but creating a hip capsule instead. They're hoping that by doing this it will make it thicker so that it won't tear as easily, and they're rebuilding it because they said it's torn so many times that there's not much left to try and repair. So, I'm crossing my fingers that this does the trick!!!
We don't have a set date quite yet...the surgery coordinator is supposed to call me tomorrow to set everything up. I do know that it won't be for at least a few weeks, because I have to meet with the endocrinologist on the first and talk with him about things and I also have to go to Seattle Oct. 5th-7th to meet with a medical genetics specialist for my ehlers danlos. So, it'll be sometime after that. I'll let ya know for sure though when I have the date.
I had a similar type of thing done on my right hip, where he took part of the IT band and created a new labrum. So, that's what they'll have to do for my left hip, but creating a hip capsule instead. They're hoping that by doing this it will make it thicker so that it won't tear as easily, and they're rebuilding it because they said it's torn so many times that there's not much left to try and repair. So, I'm crossing my fingers that this does the trick!!!
We don't have a set date quite yet...the surgery coordinator is supposed to call me tomorrow to set everything up. I do know that it won't be for at least a few weeks, because I have to meet with the endocrinologist on the first and talk with him about things and I also have to go to Seattle Oct. 5th-7th to meet with a medical genetics specialist for my ehlers danlos. So, it'll be sometime after that. I'll let ya know for sure though when I have the date.
Tuesday, September 15, 2009
I'm home!!! (Warning: Very long post!)
It has been quite awhile since I last posted (sorry it's been kinda crazy), so lets see...where to begin?
Well, since my last post, I did spend about 6 more days in the hospital after that. It was a crazy time and very emotional! The doctors ran test after test after test...once I was finally home, I looked on my online medical info to find out what all they had run and how many tests they had run. Here are the results:
Well, since my last post, I did spend about 6 more days in the hospital after that. It was a crazy time and very emotional! The doctors ran test after test after test...once I was finally home, I looked on my online medical info to find out what all they had run and how many tests they had run. Here are the results:
- 4 MRIs
- 3 Cat-Scans
- 4 X-Rays
- 2 EKGs
- 1 Echocardiogram
- 43 Lab tests run (that includes all lab work, urine samples, spinal fluid tests, etc...)
- 1 Successful Spinal Tap & 1 attempt
- 1 Upper-GI Scope
So, with all of this taking place (not to mention LOTS of doctors coming to visit) in a 10-day period of time, I was TIRED!!! Although, I think the craziest time wasn't even when any of those things were taking place, it happened the day after my last post. The CNA had helped me get up to use the restroom and come back to bed and I told her that I didn't feel well at all and that something was wrong, she left to go get the nurse (or at least that's what she said she was going to do), and I just slid up into my bed and laid down and closed my eyes (thinking I'll just close my eyes and wait for the nurse to get here). Well, that was the last thing I remembered for the next hour or so...My mom told me that she came down from work to see me and check to see how I was doing (thank goodness she did come down), she walked into my room and I was still laying there, eyes closed, still breathing and everything, but unresponsive! She had to get ahold of nurses and things to come in, they had to call the doctor, the doctor gave me different meds in my IV, and the next thing I remember, was starting to open my eyes, there were TONS of people all around me (most of which I had no clue who they were), the doctor was next to me asking me questions, and my mom was standing next to my bed with tears streaming out of her eyes. Scary and nothing that I wanted to have happen or wake up to!!!
Well, then after that, needless to say the doctor had me transferred to a different floor where I was being monitored much more closely (my room was right next to the nurses desk), and that's where I stayed until I came home. They continued running tests and things, and the doctors finally came to the conclusion, that they knew something was wrong, but they didn't know what it was--they had run every kind of test they possibly could, but this was out of their scope. So, as I started at least feeling better and things became managable, I was released to come home on Friday Sept. 11th!
Since than I've been home resting. At first it was very frustrating realizing how much help I needed with some things--like trying to take a bath (oh that was a fun experience...thank you mom for basically pulling me out--since we realized once I was in that I couldn't stand up on my own to get out!), get dressed, do my hair, etc... As the days have gone by though things have become much easier!
I do have to rest lots still--I tried being up doing lots yesterday and ended up with a horrible headache and hurting lots! And I still have lots of follow-up appointments. Monday (the 14th) was my first follow-up and it was with my primary-care doctor. Things went well, but it was emotional (to say the least). We sat down and talked about how I was feeling, about my ehlers danlos, and about my future. I tried so hard to fight the tears back as I asked my doctor if I was going to get better, if my joints would feel better, if my back would heal and stop hurting (I've started getting scoliosis due to the ehlers danlos and they found a slight fracture in my lower back as well...probably again due to the EDS), and things like this. But, as he looked at me, and as told me how sorry he was to say this, how bad he felt, and how he wishes he could do something, but that I wasn't going to get better, my joints weren't going to heal, and basically, they were just going to continue to progressively become worse. Well, than the tears came!!! I tried so hard to say that I could handle it and that it would all be okay, but deep down, it hurt to hear this, I was scared (I still am), and I was angry that this was happening.
My sweet bishop's wife (thank you Sis. Buswell for taking me to my appointment) asked the doctor different things about this, and he explained with the example that for him and her it would take decades to get to the point where my joints are and to have to face some of the choices that I'm going to have to make based on my lifestyle, what I can and can't do, getting around, and so forth; and how instead, for me, this is happening quickly and I have to face these things now. I think after all of that, between all three of us (the doctor, myself, and my bishop's wife) are eyes were all watering. Even though I knew, deep down, that everything the doctor said is the truth, it was still hard to hear, but I am so grateful that he told me and that both him and my bishop's wife were so sweet and kind in wanting to be there for me and help me through this!
Other than that appointment though, I had an appointment yesterday with a doctor at a pain management clinic, and I also have follow-up appointments with an endocrinologist, a neurologist, and I'm going to Seattle in a couple weeks (Oct.5-7) to see a medical genetics specialist for my ehlers danlos. So, this is all keeping me quite busy. The doctors did have me completley withdraw from school for the semester due to my health (which was very hard to have to do). And, with my appointment following-up with the endocrinologist, they're thinking (from everything that has happened in the hospital and so forth) that I might have addison's disease as well, so they currently have me on different medicines to treat me for this as well.
I won't lie, it all scares me, but I know that I have some of the most amazing people ever around me--doctors, nurses, family, friends, etc...--who support me, care about me, and are continually helping me everyday! I also know that I have so many people, that I can't see, that are helping me and making it possible to get through all of this (my dad, step-dad, grandma, my Savior, and my Heavenly Father)! I don't know how I could make it through without all of these people and I want everyone to know how continually grateful I am for each of you--for your thoughts, prayers, love, support, and friendship! Also, I want to specially thank so many people who helped me and were there for me so much these last couple weeks: my mom (who was there for me 24/7), each of my sisters and their families (my wall at home is now covered with pictures and cards from my neices and nephews...and they brighten my day everytime I look at them), Jenna (for always being there for me and for sneaking me up the yummy shake while I was in the hospital), Ariana, Eric, Mitch, Clay (Mitch and Clay for coming and giving me a blessing while I was in the hospital), Sis. Fessler, Emily, Mark, my single's ward (the relief society presidency and all my friends and the whole ward for fasting for me), Dr. Anderson, Dr. Kerwin, Dr. Hollingsworth, Dr. Allen, my most favorite nurse in the hospital--Alicia (for staying with me, talking to me, crying with me, and always being there), Jeff Speckman, Tres Ferrin, and just so many people I don't think I can name them all...But I just want to say THANK YOU (I don't think that even begins to express my gratitude, but I am so truly grateful).
So, I will keep you updated, sorry this post has been SO long, but I am home now, resting, and getting stronger and better! Thanks for all your love and support!
Friday, September 4, 2009
ER trips, Spinal Taps, Medicine,and lots of Tests...
Where to start? This week has been a crazy one to say the least! Well, to start off I still have not been doing well at all with my whole body just not feeling well. On Wednesday my mom woke me up like she usually to bring me breakfast before she leaves for work. (I have such a great mom! :) ) Well, when she woke me up that morning I did NOT feel good!!! I couldn't sit up in my or even lift my head up to eat breakfast, so I had her place it beside me on a chair so that I could just reach for it.
Later that day (Wednesday) I was not getting better at all, so my mom took off work, came and picked me up from the house, and took me to the emergency roon! While I was there they did blood work, urine samples, CT scans, and the worst thing (I so didn't like) was a spinal tap! One of the things that made it the worst , besides the obvious sticking a needle clear into my spine, was that the doctor and nurse were just going to do it in the ER, and I was like okay that's fine. They started it--first they went in with straight lidocaine (OUCH), than they went to go clear into the spine to the get the CSF (cerebral spinal fluid), didn't work, they went back in with more lidocaine, and then I believe they attempted to go into the spine again, but I don't know for sure. Anyways....After that the doctor looked at me, while I just have tears streaming out of my eyes, he said that due to my ehlers danlos I had alot of calcifacations along my spine and along the ligaments and things surrounding it. So, since my tissues and everything were so hard, I had to go to radiology to have a guided (by x-ray) spinal tap. So they took me straight over, and did the spinal tap (thank goodness I was so happy that my favorite radiology tech person--that does all the injections and things--was there to do mine.)
So then it was back to the ER and waiting for the results of all the tests and everything. The doctor came in, said everything looked fine, that he wanted to try me on another new medication for nerves, he gave me a dose of the medicine, and let me go home. (By than in was like 7pm on Wednesday night.)
Oh Wednesday night came...I went to bed early (probably by like 9pm at the latest), but woke up at like 3am in horrible pain and not feeling well at all. I called my mom and she came up to help me and see what was going on. I told her and she said lets try your anti-nausea medicine first. So I took the medicine and about 10mins later I threw it up! We than decided we'd try my pain medication but that I should eat something first, so I ate about five crackers, took the pill, and 20mins later I threw up again! Finally we said okay lets try the nausea medication one more time, and it came straight back up again! So not fun!
My mom told me we need to go back to the ER. I told okay and she helped me get up and off we went (I was pretty sylish I might add in my pajamas--a T-shirt and shorts--and the socks my mom just put on my feet...no one needs shoes! haha) to the emergency room! We got there, they checked me in and got me straight back and a doctor came right in. He talked to us for awhile and he said I don't know what other tests to order, because these doctors have been run almost all the tests I could think of. He did find one type of lab that hadn't been done so he ordered that and gave me some different types of medicines in my IV.
I finally woke up at like 12:30pm that same day (Thursday) and was in a hospital room. I looked at my mom and she said that they've admitted me. That day they ran an MRI on brain, did an echocardiogram (an ultasound of my heart), more blood work, and x-rays.
Later that day (Wednesday) I was not getting better at all, so my mom took off work, came and picked me up from the house, and took me to the emergency roon! While I was there they did blood work, urine samples, CT scans, and the worst thing (I so didn't like) was a spinal tap! One of the things that made it the worst , besides the obvious sticking a needle clear into my spine, was that the doctor and nurse were just going to do it in the ER, and I was like okay that's fine. They started it--first they went in with straight lidocaine (OUCH), than they went to go clear into the spine to the get the CSF (cerebral spinal fluid), didn't work, they went back in with more lidocaine, and then I believe they attempted to go into the spine again, but I don't know for sure. Anyways....After that the doctor looked at me, while I just have tears streaming out of my eyes, he said that due to my ehlers danlos I had alot of calcifacations along my spine and along the ligaments and things surrounding it. So, since my tissues and everything were so hard, I had to go to radiology to have a guided (by x-ray) spinal tap. So they took me straight over, and did the spinal tap (thank goodness I was so happy that my favorite radiology tech person--that does all the injections and things--was there to do mine.)
So then it was back to the ER and waiting for the results of all the tests and everything. The doctor came in, said everything looked fine, that he wanted to try me on another new medication for nerves, he gave me a dose of the medicine, and let me go home. (By than in was like 7pm on Wednesday night.)
Oh Wednesday night came...I went to bed early (probably by like 9pm at the latest), but woke up at like 3am in horrible pain and not feeling well at all. I called my mom and she came up to help me and see what was going on. I told her and she said lets try your anti-nausea medicine first. So I took the medicine and about 10mins later I threw it up! We than decided we'd try my pain medication but that I should eat something first, so I ate about five crackers, took the pill, and 20mins later I threw up again! Finally we said okay lets try the nausea medication one more time, and it came straight back up again! So not fun!
My mom told me we need to go back to the ER. I told okay and she helped me get up and off we went (I was pretty sylish I might add in my pajamas--a T-shirt and shorts--and the socks my mom just put on my feet...no one needs shoes! haha) to the emergency room! We got there, they checked me in and got me straight back and a doctor came right in. He talked to us for awhile and he said I don't know what other tests to order, because these doctors have been run almost all the tests I could think of. He did find one type of lab that hadn't been done so he ordered that and gave me some different types of medicines in my IV.
I finally woke up at like 12:30pm that same day (Thursday) and was in a hospital room. I looked at my mom and she said that they've admitted me. That day they ran an MRI on brain, did an echocardiogram (an ultasound of my heart), more blood work, and x-rays.
Saturday, August 22, 2009
Update....
I just wanted to give everyone a quick update about this crazy week that has occured! I went back to the doctor's office yesterday (on Friday), because I still was not getting any better. It was a hard appointment--to say the least--but I just want to say that I am so grateful for all my doctors, nurses, physical therapists, athletic trainers, everyone who works at the offices, and just all of the medical personnel who help me through everything! Also, a huge thank you to Ariana for taking me to my appointment! :)
So, about my appointment...The doctor and I talked about many things--my pain levels, school, my joints in general, going to see the doctor in Seattle, and just basically my ehlers danlos in general (since that is what kind of ties all of these things together). Here were the conclusions to basically summarize the doctor's appointment:
So, about my appointment...The doctor and I talked about many things--my pain levels, school, my joints in general, going to see the doctor in Seattle, and just basically my ehlers danlos in general (since that is what kind of ties all of these things together). Here were the conclusions to basically summarize the doctor's appointment:
- No school up on-campus for Fall semester. School starts on Monday, and the doctor told me that unless I had some miraculous recovery (which he didn't find likely especially since it's a life-time/chronic thing we're dealing with) over the weekend he didn't see how it would be even be a possibility. I agreed with him and understand exactly where he's coming from. Although, I may try and see if there's a couple of online classes I could perhaps pick up--giving me something to still do, keep busy, and keep progressing towards my degree.
- There's nothing else we can really do--because there is no cure or really any treatment (other than the anti-inflammatories, pain meds, surgery, and physical therapy) for the ehlers danlos. So, he asked if there was any chance of getting in sooner to the specialist in Washington, but I told him that I'd talked to them again but that there's no more opening (the doctor is only in the office once to twice a week) but that they'd call if something came open. So he wants me to finish the steroid pack/treatment, go back onto my old anti-inflammatories and take them (because that's already the strongest dose), continue taking my ultram (a non-narcotic pain med), and then he increased my other pain medication a little bit so I can take those as well, as needed. Then, we will wait and see what Dr. Byers, the specialist in Washington, says and if he has any ideas and/or suggestions.
- Finally, my doctor was a bit worried about me using my crutch that I have been because of the strain it puts on my upper body. I told him that that's partly why I've just been using the one crutch--so that I wouldn't use the other with my shoulder that I just had reconstructed--that I don't use them at home, but they've wanted me to use it while I'm out, not necessarily to take the weight off but more to help stabilize me. I explained to him that it's kind of between a rock and a hard place right now--use the one crutch and put strain on my upper body to help stabilize me so that I won't trip, fall, or have any problems or don't use and risk tripping or falling and causing more damage. So, he's suggested that I don't use my crutch anymore when going out, but rather use my wheelchair (with someone else pushing me)--not because I would be wheelchair-bound but to help try and preserve my joints as long as possible. He said that my joints are just wearing out fast, it's part of the disease process, and there's nothing really that we can do. So, we'll use the wheelchair to try and help calm and slow things down.
So, that's basically my doctor's appointment in a summary. Sorry this has been such a long entry, but I thought I'd give everyone an update. Thank you so much again to all the wonderful people in my life who are continually there for me! I don't know how I'd make it through everything without my wonderful family, friends, medical personnel, and my Savior! Thank you for all the continued thoughts, prayers, phone calls, visits, and everything! I appreciate everyone! Thank you!!! :)
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