Surgery Day...

Well today's the big day...I go in for my hip surgery--to help reconstruct my hip! Yesterday my mom and I flew from Salt Lake to Denver and then from Denver to Vail/Eagle. Last night I had an MRI on my hip--which was not very pleasant! I've had LOTS of MRIs before, but I think this one was a mixture of being in lots of pain from flying so much and the fact that they had to place a weight hanging on the end of my leg--pulling on it...which HURT! I ended up having to have them take it off because of the pain! After that great experience though, it was up to the doctor's office for some strength and range of motion testing and then off to get lab work done. Finally, around 7pm last night we were done for the night, so my mom and I went to Denny's to get some yummy dinner (well, more like breakfast for dinner :) ), and then back to the hotel to just rest the remainder of the night.
I wasn't able to sleep real well last night--I'm pretty nervous, anxious, and scared for what today will bring. So, at about 4:30am I just turned the tv on and watch Christmas movies on tv. Now, it's off to hurry and get ready for the day--jump in the shower, get ready, and head back to the hospital for a doctor's appointment this morning (to go over everything that will be going on today) and then surgery this afternoon.
Thank you SO much to all my wonderful family and friends for all their love, care, and support through all of this! And thank you for all the sweet posts/comments on here...I really appreciate the support, prayers, care, and strength through each of you and I love to read them! Thanks for everything! Here goes nothing...

Getting Ready...

This weekend has been very busy trying to get things all ready to leave for my trip to Colorado. My mom and I are flying out Tuesday morning around 9am, so this weekend's been full of packing, shopping for some things, finish some last minute Christmas presents (so that everything will be ready for when we get home), spending time with family and friends, and finally by last night...CRASHING IN BED!!!
As hard as it is for me to want to accept or realize, I'm learning my body isn't like everyone else's--let alone another 22-year olds body. I want so bad sometimes to be like everyone else my age and be able to just go and go and do everything and whatever I want to, but by last night and earlier during the day yesterday, I began realizing...or more like being smacked by the realization that I'm not a 'typical 22-year old'. I've been overdoing it really bad the last few days and by Friday and Saturday, I was hurting horrible, didn't feel well, and by about 7:30pm last night, I just feel asleep on the couch for the night! So, even though it's hard to realize and accept sometimes, I'm learning that I do need to let myself rest, not overdo it, and realize that that's okay.
Anyways...Besides that...Today has been a beautiful day as I have been able to go to church, feel of the Spirit, watch the beautiful snow fall, spend time with my family, and be able to receive a Priesthood blessing from my Home Teacher, Bro. Pippen, and Bishop Hadley.
Also, like I stated at the beginning of this entry, my mom and I are getting ready to fly out to Colorado on Tuesday morning. I have an MRI and some strength and range of motion testing that evening. Wednesday morning I have a doctor's (pre-op) appointment to go over everything and then surgery will be that, Wednesday, afternoon. Finally, we should (as long as the weather cooperates for us...haha) be home Sunday evening!

Update...

Sorry it has been SO long since my last post! But, here's an update as to what's going on...
I had all the testing done to check my adrenal, pituitary, and thyroid glands for any insufficiency and all tests came back normal! So that's very exciting and such a relief! Also, I went and met with the new neurologist--Dr. Skuster--and she has diagnosed me with something called daily onset headaches. No pseudotumor cerebri which is also excellent news! Yea! For the daily onset headaches, she said it can be very common in people with a past history of migraines (which I've had), so they have me on some medicine to help with that.
Since all of those tests have now come back normal and all of that is cleared, I am having surgery on my hip. I talked to the doctor's office in Colorado this week, and the surgery is schedule for Wednesday December 16th. My mom and I will fly out for Vail on Tuesday the 15th, surgery will be Wednesday the 16th, and then we will fly back home on Sunday Dec. 20th! This surgery will not be arthroscopic though, they are going to have to open up my hip, take out a section of my IT band and use it to reconstruct a new hip capsule!
Other things...I have a back brace now--not too bad of one (it reminds me more of a corset)...it wraps around my torso--because I have "bilateral pars defect" or in other words, a slight fracture on each side of my spine (on the vertebrae), a slight bulging disc (not too bad), and mild scoliosis. I also have a few braces/splints for my fingers to help them because of the laxity and hyperextending of them.
Things have been going pretty good though...I was able to enjoy a wonderful Thanksgiving with my family! I was able to meet up with some great friends from up at school (Justin, Jordan, Laurel, Corinne, Niki, and Vanessa) for lunch! I went to the temple yesterday with Emily, and we've got to have some fun hang out days! And always great hang out days, movie nights, ice cream trips, and lots of laughing with Jenna! I am SO blessed to have such amazing and wonderful family and friends!!! Thank you!!! :)

More Hospital Stays...

So things have been pretty crazy the last couple weeks. I spent another week in the hospital--October 26 to October 30. It all started the weekend before, on Friday Oct. 23rd. I wasn't feeling very well on Friday, Saturday it was getting worse, Sunday was really bad (by Sunday night I was just laying curled up in my bed in the dark, and I asked my mom to call our Home Teacher to see if he could come give me a blessing--which both he, Bro. Pippen, and Bro. Barney were so sweet to come over), and by Monday morning I felt HORRIBLE!!!
My mom called the endocrinologist's office first thing that, Monday, morning because we didn't know if this was all happening because of tapering off the medications. Anyways...my mom explained to the doctor what was going on, and he told her to take me to the emergency room to have them run tests and things--in case it was an adrenal problem. So my uncle came to pick me up and take me up to meet my mom at the emergency room (she was at work up at the hospital) and the testing and things began. I had a CT-scan on my brain, another spinal tap (to check the opening pressure--which was still elevated but not quite as high as it was previously), blood work (including a blood gas level which I had never had done before and I never want to have done again), and the monitoring of my blood pressure.
As the doctor monitored things he decided that he wanted to admit me to the hospital because of my blood pressure--which kept dropping. It would come back up to its regular level, and then would begin dropping again and just kept dropping (it got down to about 72/48). So, with everything else going on--still waiting on the adrenal testing and to get in to see a neurologist--the emergency room doctor wanted to transfer me from McKay-Dee Hospital to the new Intermountain Medical Center in Murray (where there would be more specialists).
I kinda figured 'okay, my mom's going to just take me down to that hospital and they'll admit me so that they can monitor me through the night and things'. That's not how it happened though! The doctor said I needed to be down and have my blood pressure continually monitored,so he called to have an ambulance transport me down there. So, I said 'bye' to my mom and told her that I'd see her in a little bit (she would leave to drive down too), and I left on my ambulance ride. That wasn't where the surprises all ended though...When we got to IMC (Intermountain Medical Center), I was admitted but not to a regular patient room--I was admitted to the ICU!
So, to make a long story short, I stayed in the ICU for the first night and then was transferred to a regular patient room and stayed there the rest of the time.
I saw a neurologist while I was there, and he had me try an IV treatment to see if it would help the continual headaches but I had an allergic reaction to it instead! We were able to switch to a different IV treatment and after a couple days of it I got to come home.
Before coming home though, the doctor's were able to figure one thing out...They said that I have postural tachycardia--meaning that when I go to stand up my heart rate shoots up. This, the doctor stated, is due to my ehlers danlos (collagen disorder) and the blood vessels not working right to control the blood flow when I stand. So, he said that I need to be careful when I get up, so as to not get too dizzy and pass out.
As for now, I'm home, I have follow-up appointment with a new neurologist tomorrow morning in Salt Lake, in a week from tomorrow I have my follow-up appointment with the endocrinologist to run all the lab work to check for the adrenal, pituitary, and/or thyroid insufficieny(s), and I'm just taking it easy and resting lots (especially this weekend--not having felt well at all and spending most of it in bed). I hope each of you are doing well! I will post again soon to update each of you on my doctor's appointments. Enjoy your week! :)

Surgery Postponed...

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.

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!!!

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!

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'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:

• 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!

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.

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:

1. 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.
2. 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.
3. 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!!! :)

Angels in my Life...

Oh where to begin?! These last few days have been very eventful, to say the least! We'll just start out with saying...Today I'm laying in bed--which is what I've been doing 24/7 since Sunday--and my sister, Jessica, and her two kids, Kaleb and Sammy, came over to see me, and as I'm on the computer looking at things Jessica asks: 'are you going to update your blog and write on there that you're alive?!'
So here you go everyone...I am alive!!! :) (So here's the story on why she's wanted me to write that...)
It all began Sunday morning...My mom woke me up before she left to church, so that she could help me with my physical therapy exercises on my hip. (My mom is so wonderful and I don't know what I'd do without her...she's just an angel in my life!) When she woke me up I told her that I just hurt horribly, but that's not too uncommon for me to wake up and have pain due to my Ehlers Danlos, so she said that maybe I should just stay home from church today and rest. I told her I'd see how I was feeling and things. So, my mom and little brother left to church and I gradually tried to get ready to go to my ward (I'm in a single's ward). I was still hurting alot, but I wanted to try and make it for at least part of church. I was finally ready and headed out the door, and I got to church just a little into Sunday School where I went and met up with my friends. Sunday School got over, and my best friend, Jenna, and I were heading to go down the hall to Sacrament! She's so cute, she looks at me and was like 'Jackie I'm not trying to sound mean, but you don't look very good...you either look like you are in lots of pain or don't feel well. Are you okay?' I just looked at her and told her that it was both--I was in so much pain it was making me sick, but I'd be okay. We started down the hall, and I held on to my crutch with one arm and her with the other; we stopped for a minute and I started crying a little bit and she just asked if I wanted her to take me home. I told her I'd be okay and that I wanted to try and stay. However, than the pain in my head started getting very bad and making me extremely dizzy. All I remember was saying: 'Jenna I hurt so bad and I don't feel very good.' and then I passed out!
My wonderful friends, more sweet angels in my life, caught me and laid me down. Jenna called my mom and someone else called 911. And I ended up being taken by the ambulance up to the ER.
My sister, Janeice, met my mom and I up there, and they--my mom and Janeice--stayed with me the entire time. I love my family so much...they mean everything to me! The doctor ran blood tests, x-rays, CT-scans, IVs, pain meds, and everything while I was up there. All of my tests came back normal (well nothing came up that we didn't know about all ready...the CT-scan showed mild curvature of my lumbar spine and an increase in size and number of kidney stones throughout my kidneys) and so that was great news!!! She, the doctor, said that she's thinking I have costochondritis again--which is an inflammation of the cartilage between my ribs and my sternum--and that and all of the other pain and inflammation throughout my body is coming from my Ehlers Danlos.
The Ehlers Danlos, as I have said, is a collagen disease and collagen is found throughout your entire body. So, with this flare-up, the joints connecting my ribs and sternum, between my neck and my skull, in my back, shoulders, hips, etc... (basically all throughout my body) all pop, shift around a little bit, and just inflame everything...thus causing all of the pain, sickness, and dizziness.
So, I went to my primary care physician yesterday, Tuesday, and things still aren't getting better, so they switched the anti-inflammatory medicine I was on to a steroid (it's a 6-day taper off treatment) to see if hopefully this can hit it and help calm everything down. In the meantime, while I'm waiting for that to kick in, I'm just home laying in bed, taking naps, watching movies, and just taking it easy.
I'm so grateful that it was nothing more severe than this, and more than anything, I'm so grateful for all the many angels that the Lord has blessed me with in my life! I want all of my family and friends to know how much I love them, am grateful for them, and that I don't know what I'd do without them. It seems that whenever I'm having a hard time or anything or just need a little "pick-me-up" my family and friends have either called and/or come over to visit! THANK YOU SO MUCH to my mom, my siblings (Janeice, Jodi, Jessica, Jill, and Taylor), my neices and nephews, my Bishops (both in my family ward and in my single's ward), my friends (Jenna, Eric, Dallin, Ariana, Tiffanie, Tara, Ashley, Tiffany, Kelsey, Jill), so many ward members and leaders (again from both wards...Sister Fessler, Jennifer, Amy, Bro. Carlile, Bro. Scott, Mitch), and just everyone!!! Thank you for always being there for me and helping me through everything...I love you guys!!!!

Moving Forward...

Sorry I haven't updated this in a little while, but here's what's been going on...
I've been in my brace and using my crutch still since my last entry (trying to keep my hip stable and things). A few days ago I met with one of my doctor's, Dr. Blackham, here in Ogden--at McKay-Dee Hospital--and it was a tough visit, but there's still good that comes out of it!!!
We sat down and talked about all of my joints, how painful and unstable they are becoming, what I'm supposed to do to be able to go to school (up on campus) again, sleep well at night, and just function. That's where the hard part came in: He just looked at me (with that look of a 'I really don't want to have to tell you this') and told me that there was nothing else he could do, everything I was already trying was all that he could think of, that this is all part of the disease process, that I have--with my complications and things--the worst case he's ever seen (which I didn't particularly want to hear that), and that, sadly, it's only going to get worse! Hard to have to hear, right?! :(
Well, here comes the more positivie side to it--the silver lining that I needed to try and find: Dr. Blackham suggested that I try and get into a doctor at one of the clinics that worked/specialized more with Ehlers Danlos patients. Of course none of those clinics are around here really, so I made a phone call. I called Dr. Byer's office at the University of Washington, up in Seattle, because another doctor I had seen down at the University of Utah had told me about Dr. Byers. His office called me back today, and guess what...I have an appointment with Dr. Byers on Tuesday October 6th!!! I'm exciting! I know that they're still might not be any exact answers to come from this, because as of right now there is no cure, but it'll be nice to meet with a doctor who's doing research on Ehlers Danlos, who might have some ideas, and who might be able to help me have a little bit more of a functionable life!!!
My old seminary prinicipal my senior year of high school, Brother Bell, once told me two things that have always stuck with me and that I'll never forget...The first was: "The Lord knows what you can handle and He will help you through...Pray as if everything depends on Him and live as if everything depends on you." The second was: "The power within you is greater than the obstacles in front of you."
I'll admit that some days I have a hard time believeing that I am strong enough to deal with the things that I am faced with, but I know that when I turn to the Lord and do these things that Bro. Bell has told me--praying to Him like everything depends on it--I can feel that power within me grow and He does help me through those obstacles in front of me!

The Verdict is in...

I got a call from my doctor's office in Colorado this afternoon, and the nurse--she's so sweet, I just love her--told me that she was calling to let me know that the doctor had looked at my MRI today and said....that it looks like I've torn my hip capsule back open! :(
They said this keeps happening because of my Ehlers Danlos, and he doesn't want to keep going in and doing surgery every time it tears back open to close it back up. (I've already had surgery on that one hip twice within the last year.) So, they want me to stay in my brace (it's so lovely...I'll have to post a pic...haha...it's black and goes from my ribs, around my waist, and down to my ankle) for at least the next 6 weeks, use my crutch still--mostly for support (and only one because I can't really use the other one due to my recent shoulder reconstruction)--and we'll do another MRI in 6 weeks.
I can take my brace off and get in a pool and just walk around--carefully--but no extension (beyond 0 degrees--so straight with my body) or external rotation.
So, let's cross our fingers and hope it calms down!!!

Not until Monday...

So, I said that I'd be giving updates on what's going on with my health and stuff, so here's the start....First off, I'll kind of go back and give an explanation on some things to help explain to anyone who may not know. Here it goes...
Last August I was diagnosed with a rare collagen disease called Ehlers Danlos. There are many different types of this disease, and the geneticist that I was sent to said that I have type 3--the hypermobility type--and I'm more on the severe end of the spectrum. So, what this is/causes is your collagen is all throughout your body--in your joints, skin, organs, intestines, etc... (although mine is mostly effected in my joints and some in my intestines and things)--and where most people joints only go so far (staying within a certain range of motion and then your joints stop), mine don't. My joints stretch and don't stop--one of my doctor's calls me Gumby and another type of name that can go with people that has this would be like Elastic-girl/boy. Thus, my joints may go until they sublux (go part way out of socket and then usually back in on their own), dislocate, and/or tear ligaments, tendons, cartilage, etc... So, I have had numerous surgeries (I've had 19 surgeries to date), casts, braces, splints, crutches, wheelchair, etc...
So, getting more up to date...In March of this year I had surgery on my left hip (my second on that hip), this surgery took place in Vail, Colorado, and repaired my hip capsule which tore back open, debrided my labrum, shaved the bones to form them correctly, released my IT band and my iliopsoas (my hip flexor), and heated the capsule to form it tighter.
In April of this year I had surgery on my right shoulder (the third on that joint) down at LDS Hospital in Salt Lake, and for this surgery I had to have a metal cap placed in my shoulder--it's called a hemi arthro-cap. To do this, they had to shave the head of my humerous (the bone in my upper arm) back, place a metal cap over that and screw it down into the bone; so now I get to set off metal detectors. ;)
Anyways...For my hip, I was in a brace, that goes up to my ribs (around my waist) and down my left leg to my ankle, until around the second week in June (it was on for about 3 months) and then I've been on crutches since (so for about 6 weeks). Although, I've only been able to use one crutch due to the surgery on my shoulder.
Well, this past Sunday night, after I'd come home from the fireworks up at Weber State and was laying in bed trying to fall asleep, I was laying in bed on my side and when I went to move my leg my hip obviously didn't want me to move, because my hip popped!!! My hand was along side of me so I could feel it with my hand, and it felt like it actually subluxed--not a very pleasant feeling! So, I talked to my doctor's office in Colorado first thing Monday morning and I am now back in my brace and still using my crutch. Yesterday I had to go have an arthrogram--an MRI with contrast--done, so they injected contrast/a dye into my hip (not the most pleasant feeling to have an injection clear down into your hip socket while you're trying to lay still), did the MRI, and then we sent the MRI and report to the doctor's office.
I talked to the doctor's office today and they recieved all of the information, but the doctor won't be able to look at it until Monday. So, hopefully Monday I will get a phone call from them and find out what the MRI said. I'm crossing my fingers that all is well and nothing tore open again! I'll find out, and then I'm sure there will be another post! Now, Monday just needs to come so I can find out and hopefully get this brace back off!

My blog...

So I've been thinking--while I've been playing around trying to figure stuff out on here--about what I'd put on here; I mean, I'm not married, I don't have kids, or anything like that--my life's just pretty simple...school, friends, and family. Then, I thought...I'm going to use my blog to kind of keep an update on everything going on in my life--from school, to family and friends, to my health stuff.
This blog, therefore, will be a big mixture of everything going on in my life. Lots of things will probably be update things from doctors, how I'm feeling, and that stuff (hopefully none of you mind because I'm thinking this will be a nice little "out" for me to write things), but then I'll also get to post lots of fun stuff from exciting things with my family, friends, and the ever exciting life of a college student! :)
Let the blogging begin....

I gave in....

So my best friend Jenna got into the whole "blogging " thing and she was like 'you should get a blog too,' so as you can tell, I gave in! It seems pretty fun, but I'm still trying to figure it all out. So, we shall see how it goes!