Hey! Sorry that it has been so long since I posted! It has been pretty crazy here! I have had several appointments since the last post.
We met with my ENT for the sleep study results, which came back abnormally normal! He told us that 94% of people who have a sleep study done have some form of apnea, and I didn't! The fact that it came back normal, made me abnormal... Of course!
Later that day, I had PT. I was doing really well and improving, so we kept going for longer than we should have. The next day was pretty bad! I haven't been in that much pain in a long time! To add to it, my heart rate was REALLY high, even for me! My resting heart rate stayed around 120 bpm and got up to 180 bpm! It went down over the next few days, and my pain leveled back out to my "normal" pain level. I went back to PT 2 days later, and we just took it easy.
Last Saturday, I went with my mom and 2 of our friends to find my prom dress. My heart rate was still pretty high so we took the chair. I didn't want to at first, but I was thankful that I did. We searched all over the mall and had no luck! On our way out I suggested we try one more store before we left. We were all praying that we would find something I loved, and that it was inexpensive! When we got to it, we saw some gorgeous dresses that were WAY too expensive, but we decided to keep looking around. As we walked farther down the wall, we saw that almost all of the dresses were 70% off! I probably tried on 10 different dresses in there that were all originally around $400! I finally found one that fit perfectly and was just what I was looking for! We were all so excited!!! God really blessed us! It was a wonderful day with some wonderful friends!
Tuesday I went to the Hand Center to try the Silver Ring Splints again... This time I was not going in there expecting them to fit, because I knew that my joints have become very swollen. And I was right! They didn't fit, but we resized them and she reordered them. I am hoping to get them in the next week or so! My fingers really need support!
I am still doing PT and my core muscles are getting stronger. We are noticing that my joints, especially my knees, tire out really quickly! My knees are continuing to get looser, which makes it more difficult and painful to walk. I am probably going to have to look into getting knee braces, just for the days when I do a lot, or when they are looser.
This week I have a cardiologist appointment. We will go over the results of the event heart monitor and catch him up on what has been going on since my last visit. We will let you know how that goes!
Here are some of the scans from NY. I labeled the abnormalities causing some of my symptoms. I hope they help you better understand what we are talking about!
We met with my ENT for the sleep study results, which came back abnormally normal! He told us that 94% of people who have a sleep study done have some form of apnea, and I didn't! The fact that it came back normal, made me abnormal... Of course!
Later that day, I had PT. I was doing really well and improving, so we kept going for longer than we should have. The next day was pretty bad! I haven't been in that much pain in a long time! To add to it, my heart rate was REALLY high, even for me! My resting heart rate stayed around 120 bpm and got up to 180 bpm! It went down over the next few days, and my pain leveled back out to my "normal" pain level. I went back to PT 2 days later, and we just took it easy.
Last Saturday, I went with my mom and 2 of our friends to find my prom dress. My heart rate was still pretty high so we took the chair. I didn't want to at first, but I was thankful that I did. We searched all over the mall and had no luck! On our way out I suggested we try one more store before we left. We were all praying that we would find something I loved, and that it was inexpensive! When we got to it, we saw some gorgeous dresses that were WAY too expensive, but we decided to keep looking around. As we walked farther down the wall, we saw that almost all of the dresses were 70% off! I probably tried on 10 different dresses in there that were all originally around $400! I finally found one that fit perfectly and was just what I was looking for! We were all so excited!!! God really blessed us! It was a wonderful day with some wonderful friends!
Tuesday I went to the Hand Center to try the Silver Ring Splints again... This time I was not going in there expecting them to fit, because I knew that my joints have become very swollen. And I was right! They didn't fit, but we resized them and she reordered them. I am hoping to get them in the next week or so! My fingers really need support!
I am still doing PT and my core muscles are getting stronger. We are noticing that my joints, especially my knees, tire out really quickly! My knees are continuing to get looser, which makes it more difficult and painful to walk. I am probably going to have to look into getting knee braces, just for the days when I do a lot, or when they are looser.
This week I have a cardiologist appointment. We will go over the results of the event heart monitor and catch him up on what has been going on since my last visit. We will let you know how that goes!
Here are some of the scans from NY. I labeled the abnormalities causing some of my symptoms. I hope they help you better understand what we are talking about!
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We finally were able to schedule the appointments ordered by Dr. Francomano! It was a lot of back and forth with rewriting the order, but we have an appointment at MUSC on March 24! The people in the imaging department were so helpful and were even able to fit my appointments all in one day! I am very excited to go there and see the results of the scans and ophthalmologist appointment!
Surgery... I am still not sure what I think about it... I don't want to do it, but I know I have to! I just keep praying that this is the right thing to do, and God shows me just about everyday that I need to do this! I will continue to pray that my fears won't get in the way of me doing God's will! It is very difficult, but I am just trusting that He knows what He is doing and that there IS purpose to my suffering! I have already seen some purpose to it, and I know that there is more to come!
Thank you for all your support and prayers! My family and I can never thank you enough!
Love,
Mackenzie
2 comments:
Hi Mackenzie! I am a fellow 'Trifecta' groupie (if you can call us that!) LOL I found your site on the 'Trifecta' yahoo group. I am 24. I have had my Decompression, and Tethered Cord Release (all at TCI) and am awaiting fusion. Thanks to EDS I also have Osteoporosis and have to wait until my bone mass is built up. I also have Epilepsy and Hydrocephalus.
I read about your appointment with Dr. Francomano. That's so great that it went so well! She is the greatest, though! :) I had my appointment in October and was Diagnosed with Classical and possible Vascular.
I have a website aswell, if you would like to stop by! I would love to keep in touch. If you join my site and enter your e-mail address when you sign the guestbook, then I will have it.
My site is:
www.freewebs.com/chiariwarrior
Kristen
Mackenzie, hi, I'm an e-friend of your mom's. I'll be going to TCI to have my fusion on April 28. Maybe (?) our paths will cross?
Anyway, I wanted to say that I pray God will send you peace about the surgery.
big hugs (gentle ones)
Virginia
www.jeffersonfracture.blogspot.com
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