Okay, so it has been a super long time since I posted--I really need to get better at this, and I promise I will try. But, here's an update on what's been going on since my last post....
As far as medically, the doctors decided they didn't want to do surgery on my knee so I've just been trying to be careful, do some strengthening, and we've been taping and bracing it. I went back for a check up in Colorado on my hip and they said that it is looking really good, I finally got my brace off (only had to have it on for about 4 1/2 months), I get to start some additional strengthening stuff on it. and I'm just supposed to take it slow and be very, very careful!!! Alot of my other joints--my wrists, fingers, shoulder, knee, and stuff have been getting worse and having lots of problems, but the doctors have said that as of right now there's nothing really we can do for them besides bracing them (I have braces for both thumbs, one wrist, about 5 fingers, and my knee), taking it easy, and doing what little easy things I can to strengthen them. But, things are going pretty good. I've been sick the last couple weeks with abdominal pains, headaches, sinus, and then a virus, but I went to the doctor today and got some medicine, so hopefully it should start going away in a couple days. I gave it to my mom though--I feel bad...sorry mom!!!
On other notes...Spring semester ended and I was able to finish with a 4.0! Yea!!! I'm taking summer semester off, but am studying some different stuff on my own to try and be ready for fall semester. I finally finished painting my shelf and a couple other things and hanging it up in my room that I redid, did some cleaning and organizing, so it's finally almost finished! I'll have to take some pics and show ya when it's all done...I like it!
And finally, to end this post, I'll get to the title of my entry..."May=Ehlers Danlos Awareness Month"! So, as most of you probably know, I have a rare collagen disease called Ehlers Danlos that I was diagnosed with about a year and a half ago. Anyways, May is Ehlers Danlos Awaress Month and we're (the ehlers danlos national foundation and the eds--ehlers danlos syndrome--community) trying to get it recognized in each state and raise awareness about it because it is so unheard of. So I thought that I would post about it on my blog to let you all know that it is Ehlers Danlos Awareness month and I'd really appreciate the support from all of you on this subject that is very important to me! If you have any questions about it or would like to know more information on it, you can always ask me--please feel free to--or you can visit the national foundation website at: www.ednf.org There's actually a big learning conference this summer in July (for the annual learning convention and celebrating 25 years of the foundation)back in Baltimore that I want to try and go to.
Well, I hope that each of you are doing wonderful! I will try to post again very soon!
Saturday, May 22, 2010
Tuesday, March 23, 2010
MRIs and Spinal Taps
The last week has been pretty busy. Last Thursday I went in to have an MRI on my brain--to check and see if my spinal pressure was low (because I have had a constant headache for the last 6 weeks or so). When I got there I needed to also schedule an MRI on my knee (due to some pain and instability from my ehlers danlos), and luckily and so nice as they were, they just did both MRIs at the same time.
I got a phone call that night from my neurologist, and the good news was that my spinal pressure was not low, the bad news, we still didn't know for sure what was going on with these headaches. So, yesterday I went back into the doctor's office and they had to do a spinal tap to check and see if the spinal pressure was too high. Good news again, my spinal pressure was normal! Yea! The neurologist said that it sounds like since my spinal pressure is normal, which is good, that I have chronic migraines and that due to some of the pain medicine doctor's have given me for my joints and my kidney stones, it has caused them to get worse.
As far as the MRI on my knee, it did show a tear in my meniscus (the cartilage in my knee), and I go to the doctor today to find out what is going on for sure with that.
Other than those things, nothing too much new or exciting is going on. This semester of school gets done in like 4 weeks so I am super excited about that! Yea!!! And, I was able to have a wonderful, fun, well-needed movie night with Jenna the other night...thank you SO much Jenna for always being there for me--I love ya to death girly and I honestly don't know what I'd do without you!
I am continually blessed with an amazing family and great friends who I love so much and am so grateful for, and also a loving Savior and Father in Heaven who continually watch over me!
I got a phone call that night from my neurologist, and the good news was that my spinal pressure was not low, the bad news, we still didn't know for sure what was going on with these headaches. So, yesterday I went back into the doctor's office and they had to do a spinal tap to check and see if the spinal pressure was too high. Good news again, my spinal pressure was normal! Yea! The neurologist said that it sounds like since my spinal pressure is normal, which is good, that I have chronic migraines and that due to some of the pain medicine doctor's have given me for my joints and my kidney stones, it has caused them to get worse.
As far as the MRI on my knee, it did show a tear in my meniscus (the cartilage in my knee), and I go to the doctor today to find out what is going on for sure with that.
Other than those things, nothing too much new or exciting is going on. This semester of school gets done in like 4 weeks so I am super excited about that! Yea!!! And, I was able to have a wonderful, fun, well-needed movie night with Jenna the other night...thank you SO much Jenna for always being there for me--I love ya to death girly and I honestly don't know what I'd do without you!
I am continually blessed with an amazing family and great friends who I love so much and am so grateful for, and also a loving Savior and Father in Heaven who continually watch over me!
Tuesday, March 9, 2010
I'm Really Bad at Posting...
So I know that I said in my last post that I was going to try this year to keep my blog regularly updated, but, as you can tell, this obviously hasn't happened. haha! And I know that today's post won't be too long, but I figured I'd give everyone a quick update as to what's been going on (and kind of as to why I haven't posted in so long).
Well, we will just say that this last month or so has been quite busy and full of surprises, to say the least. I have been sick for about the last month and we have been in and out of doctor's offices and the ER probably more times than I could count. I've had kidney stones in my kidneys for about the last 6 years, but they've just kind of stayed there (not really passed--only a couple times--and stayed pretty small). Just recently, however, they started passing and growing. I was in the ER one day passing one on my right side and then two days later I was passing one on my left side. About a week later I began just not feeling well and it got worse each day. We were, again, in and out of the doctor's and ER, and I ended up finding out that I had a horrible UTI, an impacted colon, my kidney stones were growing, and all of this had also kicked my migraines on (so I've had a constant headache for the last 3 weeks).
Anyways...Long story short, we got my colon and UTI under control, and I ended up going in this last Friday for surgery on my right kidney (to do lithotripsy and break the stones up). The surgeon said we could only do one kidney at a time, so we did the right one now, and when that one is all healed and under control we will do the left one. He told my mom that I two (of the three large stones they broke up)of the stones were 7mm each and the third stone was almost 1cm!!!
So, I've been home resting and trying to take it easy, heal, and recover from all of this. Sorry again I haven't posted in so long, but I will try my to be more diligent! :) I better get going and rest some more, but there's just a quick little update. I hope that all of you are doing well!
Well, we will just say that this last month or so has been quite busy and full of surprises, to say the least. I have been sick for about the last month and we have been in and out of doctor's offices and the ER probably more times than I could count. I've had kidney stones in my kidneys for about the last 6 years, but they've just kind of stayed there (not really passed--only a couple times--and stayed pretty small). Just recently, however, they started passing and growing. I was in the ER one day passing one on my right side and then two days later I was passing one on my left side. About a week later I began just not feeling well and it got worse each day. We were, again, in and out of the doctor's and ER, and I ended up finding out that I had a horrible UTI, an impacted colon, my kidney stones were growing, and all of this had also kicked my migraines on (so I've had a constant headache for the last 3 weeks).
Anyways...Long story short, we got my colon and UTI under control, and I ended up going in this last Friday for surgery on my right kidney (to do lithotripsy and break the stones up). The surgeon said we could only do one kidney at a time, so we did the right one now, and when that one is all healed and under control we will do the left one. He told my mom that I two (of the three large stones they broke up)of the stones were 7mm each and the third stone was almost 1cm!!!
So, I've been home resting and trying to take it easy, heal, and recover from all of this. Sorry again I haven't posted in so long, but I will try my to be more diligent! :) I better get going and rest some more, but there's just a quick little update. I hope that all of you are doing well!
Thursday, January 14, 2010
It's Been Awhile...
First off I apologize for never updating afer the surgery--I let everyone know what's going on, update right before I go in for surgery, and than BAM...I stop!!! But, this year, one of my goal's is going to be to try and keep this thing actually updated!!! But, since there's been SO much that has gone on since I last wrote, I will write some today and then update on other things tomorrow and so forth. So, here we go....
First, lets start with the surgery! The surgery went well!!! My wonderful surgeon, Dr. Philippon, said that the bones and things from the previous surgery was healing great, but he could definitely tell why I was hurting so bad...There was a BIG hole in my hip capsule!!! So, he took a section of my IT Band out and reconstructed a new hip capsule!
However, because this is me everything can't go quite as smoothly as just that! :P So, after the surgery, instead of just having to stay over in the hospital that night (because it was late when we got out of surgery) and getting out in the morning, I had to end up staying for about 3 days! They had an epidural in my spine to help with the pain and when that came out we found an allergic reaction (from the medicine) spreading horribly all over my back, my heart rate went up high, and my blood pressure dropped clear low again (like it did when I was in the hospital in the fall...at about 70/40). I was finally able to be released from the hospital the day before I was scheduled to head back home to Utah!
However, our crazy adventure in Colorado can't end there!!! The day after being released from the hospital--our day to return home....Things changed from flying home to driving home!
See, we were all set to fly home, but after this surgery...now being in my hip brace again and with a big restriction on my range of motion, we were wondering how flying home was going to work. (Because the planes we'd have to fly home on are those small, 36-passenger planes). Two of my wonderful sisters, Janeice and Jodi, left Utah late Saturday night (the day I got out of the hospital) and actually drove all night and got to our hotel at like 5am Sunday morning, picked my mom and I up, and drove us home--instead of trying to have us fly! It worked out so much better, and I am so grateful to them! I have such a wonderful family who is always there for me and looks out for me and I am so grateful to them for that!!!
So, as of right now....My hip is doing okay! I am able to walk without crutches (I only had to be on them for about a week since the bones were doing well), but I do need to make sure I just don't wear myself out. I'm back into my lovely hip brace (that wraps around my waist--at like my ribs--and then goes clear down my leg to about my ankle), with range of motion from 0 to 90 degrees, and on for the next 3 to 6 months! I use a CPM machine each day for about 2 hours a day--for 6 weeks (so 2 more weeks. And basically just rest and try to do things as well as I can without overdoing it! No physical therapy though right now (or for awhile) because the doctor's just waiting and hoping my hip will heal up tight!
So, that's basically the update for now...at least as far as my hip is concerned! I will continue to to update everything else that's been going on another day! But as for today...I am grateful for everything that the Lord continually blesses me with--for my family and friends, for the health and strength that I do have, and for so many blessings and opportunities in my life! :)
First, lets start with the surgery! The surgery went well!!! My wonderful surgeon, Dr. Philippon, said that the bones and things from the previous surgery was healing great, but he could definitely tell why I was hurting so bad...There was a BIG hole in my hip capsule!!! So, he took a section of my IT Band out and reconstructed a new hip capsule!
However, because this is me everything can't go quite as smoothly as just that! :P So, after the surgery, instead of just having to stay over in the hospital that night (because it was late when we got out of surgery) and getting out in the morning, I had to end up staying for about 3 days! They had an epidural in my spine to help with the pain and when that came out we found an allergic reaction (from the medicine) spreading horribly all over my back, my heart rate went up high, and my blood pressure dropped clear low again (like it did when I was in the hospital in the fall...at about 70/40). I was finally able to be released from the hospital the day before I was scheduled to head back home to Utah!
However, our crazy adventure in Colorado can't end there!!! The day after being released from the hospital--our day to return home....Things changed from flying home to driving home!
See, we were all set to fly home, but after this surgery...now being in my hip brace again and with a big restriction on my range of motion, we were wondering how flying home was going to work. (Because the planes we'd have to fly home on are those small, 36-passenger planes). Two of my wonderful sisters, Janeice and Jodi, left Utah late Saturday night (the day I got out of the hospital) and actually drove all night and got to our hotel at like 5am Sunday morning, picked my mom and I up, and drove us home--instead of trying to have us fly! It worked out so much better, and I am so grateful to them! I have such a wonderful family who is always there for me and looks out for me and I am so grateful to them for that!!!
So, as of right now....My hip is doing okay! I am able to walk without crutches (I only had to be on them for about a week since the bones were doing well), but I do need to make sure I just don't wear myself out. I'm back into my lovely hip brace (that wraps around my waist--at like my ribs--and then goes clear down my leg to about my ankle), with range of motion from 0 to 90 degrees, and on for the next 3 to 6 months! I use a CPM machine each day for about 2 hours a day--for 6 weeks (so 2 more weeks. And basically just rest and try to do things as well as I can without overdoing it! No physical therapy though right now (or for awhile) because the doctor's just waiting and hoping my hip will heal up tight!
So, that's basically the update for now...at least as far as my hip is concerned! I will continue to to update everything else that's been going on another day! But as for today...I am grateful for everything that the Lord continually blesses me with--for my family and friends, for the health and strength that I do have, and for so many blessings and opportunities in my life! :)
Wednesday, December 16, 2009
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...
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...
Sunday, December 13, 2009
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!
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!
Wednesday, December 2, 2009
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!!! :)
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!!! :)
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