well I am moving my blog. I tried to customize this one and I had so many problems.. this will always be here and I linked this to my new one so I and others can go back to it. On my new one there is a link at the very top that says "older blog" that will bring you here.
my new one is : http://brielizabeth.wix.com/fearless
you can do the same as before, read, comment plus send me emails, and visit my facebook, instagram and pinterest. I am still working on it but I think it will work out well.
please visit !!! thanks!!!
Tuesday, May 19, 2015
Ugh
I know my blog layout doesn't make much sense right now. I'm trying to learn how to customize the html. This might take awhile :(
Monday, May 18, 2015
Spinal Dysraphism
Spine Diagram
Spinal Dysraphism a medical term that refers to neurological disorders related to malformations of the spinal cord. Tethered spinal cord syndrome is a type of spinal dysraphism.
( Spinal Dysraphism and Spina Bifida )
This is what I was diagnosed with. It is a little frustrating because I don't know all of my 'issues' with my spine/spinal cord. I needed to have a myelogram done to see exactly what and where the damage was, however because of my portal hypertension (causing low platelets) that test was unable to be performed. I only know what I was originally told from my MRI. I do plan on somehow having the procedure done for a lot of reasons, but overall I do want to know every detail.
Nothing new had happened with this regarding any tests or doctor visits. I just know I have not written in a while and I thought maybe it would be good to go into a lot of detail and explanations of each disorder I have. Starting with this.
What I was told:
I have vertebral anomalies in C1, multiples at C3-4 and again at C7 through T4. Basically deformities from the base of my skull/top of my neck all the way down to about the middle of my back, my spine twists in my neck. Similar to this image :
found here
I also have butterfly vertebrae which is vertebrae that have not fused each half together.
I have scoliosis and Levoscoliosis which is a little more dangerous then regular scoliosis I have just found out while researching (wonderful). It is a curvature to the left side which can have some risk to your heart as I am learning - here
As for my spinal cord: I have diastematomyelia here- which is a split in the spinal cord. This contributes to my leg pain and weakness. There are other signs such as club foot which I do not have.
As of now that is all I know about my personal case. I dont have my own images. I had a disk with them on it, but my dr has it still. I would like to get it back and be able to pull some images off to put up here.
As for how I feel and how I am told it can make me feel : my legs and arms get very numb and tingly. My legs hurt constantly. However walking down stairs or stepping down off of something, (any sudden hard pressure applied) causes almost a feeling of broken legs. Sitting too long causes complete numbness.
It is a slow progression I was told. A lot of people can go without knowing they ever had any issues. I couldn't I guess. It does concern me how fast it is progressing. While I have made it 24 years before that night happened when my knee hurt, a lot has changed in the past almost 2 years. Yes two years is a good amount of time I guess, its not like it all happened in a week, but 2 years goes fast. And at 25 years old going another 2 years only gets me to 27, I cant help but wonder how much further a long with it all I will be by then. It doesnt necessarily scare me. Im pretty sure nothing can do that anymore (until I find something else out bad haha............just kidding). Its just a concern.
Its a little difficult to write more about the condition because spinal dysraphism is a broad term for multiple anomalies throughout the spine and spinal cord, since I dont know much more about my own case I cant explain everything as of now.
Until next time :)
Spinal Dysraphism a medical term that refers to neurological disorders related to malformations of the spinal cord. Tethered spinal cord syndrome is a type of spinal dysraphism.
( Spinal Dysraphism and Spina Bifida )
This is what I was diagnosed with. It is a little frustrating because I don't know all of my 'issues' with my spine/spinal cord. I needed to have a myelogram done to see exactly what and where the damage was, however because of my portal hypertension (causing low platelets) that test was unable to be performed. I only know what I was originally told from my MRI. I do plan on somehow having the procedure done for a lot of reasons, but overall I do want to know every detail.
Nothing new had happened with this regarding any tests or doctor visits. I just know I have not written in a while and I thought maybe it would be good to go into a lot of detail and explanations of each disorder I have. Starting with this.
What I was told:
I have vertebral anomalies in C1, multiples at C3-4 and again at C7 through T4. Basically deformities from the base of my skull/top of my neck all the way down to about the middle of my back, my spine twists in my neck. Similar to this image :
found here
I also have butterfly vertebrae which is vertebrae that have not fused each half together.
I have scoliosis and Levoscoliosis which is a little more dangerous then regular scoliosis I have just found out while researching (wonderful). It is a curvature to the left side which can have some risk to your heart as I am learning - here
As for my spinal cord: I have diastematomyelia here- which is a split in the spinal cord. This contributes to my leg pain and weakness. There are other signs such as club foot which I do not have.
As of now that is all I know about my personal case. I dont have my own images. I had a disk with them on it, but my dr has it still. I would like to get it back and be able to pull some images off to put up here.
As for how I feel and how I am told it can make me feel : my legs and arms get very numb and tingly. My legs hurt constantly. However walking down stairs or stepping down off of something, (any sudden hard pressure applied) causes almost a feeling of broken legs. Sitting too long causes complete numbness.
It is a slow progression I was told. A lot of people can go without knowing they ever had any issues. I couldn't I guess. It does concern me how fast it is progressing. While I have made it 24 years before that night happened when my knee hurt, a lot has changed in the past almost 2 years. Yes two years is a good amount of time I guess, its not like it all happened in a week, but 2 years goes fast. And at 25 years old going another 2 years only gets me to 27, I cant help but wonder how much further a long with it all I will be by then. It doesnt necessarily scare me. Im pretty sure nothing can do that anymore (until I find something else out bad haha............just kidding). Its just a concern.
Its a little difficult to write more about the condition because spinal dysraphism is a broad term for multiple anomalies throughout the spine and spinal cord, since I dont know much more about my own case I cant explain everything as of now.
Until next time :)
Wednesday, April 29, 2015
Doctors
Hi guys!
So today I had a doctors appointment with a doctor for disability. I received a letter saying they wanted more information about my back/spinal issues.
Well it was a longgggg day. My appointment was at 11:40am and of course because I'm always early I was there at 11. Good thing because I couldn't find the place at first. Anyway.
Had to wait over 2 hours! Then they took me back for X-rays of my lower back and my knee I had surgery on. Wasn't sure why. Specially since my big spine problem is in my neck and upper back. The tech wasn't sure but he said it was probably that they had all the other info and wanted this as well. I never had my lower back checked.
Laying down for the X-ray he had to straighten me out to line me up evenly and let me tell you, I am so crooked. OMG. Worse then I thought. I guess since I can't lay straight ( I never realized that) I never knew. I felt so out of place and crooked once he moved me. I could feel how uneven things felt. My one leg is longer then the other. Same with my arms. I felt like I would fall off the table. Yet I was completely straight. So weird and really uncomfortable.
I had to go wait again after. Finally in to see a dr. She was very nice. Everyone was actually. She just asked me how everything started. And how I got to this point. Then I explained how I feel and my symptoms. Then she did some tests. Had me walk back and forth. Stand on my heels and walk. Which I can't do. My feet immediately fall to the floor as if someone pushes on my toes. Then she had me sit and poked me with a paper clip. Didn't feel it really. Then we discussed what she found as she wrote her notes. She doesn't know what happens next. So I don't either. I hope to hear soon though and hopefully some good news. I could really use this.
Anyway all that and I finally got home around 4! Ugh so long.
And as I just stood up to go get something I see my back is killing me. Probably from the tech moving me all over. Oh well. I don't have anything else this week.
Oh on another note it has been 4 weeks eating better following weight watchers points and I am down.......7.6 pounds!! Woo hoo haha. I feel like that is really good. I know a lot of this is from all the medication and that may be way it is coming off easy. I do hope it keeps it up though. I'm starting to see a difference. And Marqui told me yesterday he does as well :) :)
That's all for now. I really need to update more often. It is hard though when I am home now all the time and don't have anything new going on. I wanted this to be mostly about my health but maybe I'll talk about other things.
Tuesday, April 14, 2015
Never ending
It's be a while again. Oops.
So last week on Monday I had to go to an appointment with my neuro, my original dr who found my spinal problem and referred me to Columbia University. I've applied for disability but it had been too long since I've seen him and I had to go. No big deal I thought. I've had a few things I really wanted to see him about anyway but was putting it off since I can't do any surgery to correct the problem.
The things that have been going on are not really all new. My back still hurts my knees are still not they way they should be, walking down stairs still feels so strange and awkward. But the new things, my legs going numb when raised ( if I put my leg up to shave in the shower) or when I sit in the car has become worse, and my arms constantly go numb and tingly. I will wake up during the night with both of them 'asleep'. I usually just have to shake it off or change positions but it will happen through out the day as well and obviously isn't right.
Well I first explained everything, going to Columbia, my platelets, cirrhosis, my surgeries and being unable to have anymore surgeries.
He did some tests, had me squeeze his hands, lift my legs as he pushed them down, I did ok I guess. Checked my reflexes, very little in my right leg. Absolutely none in my left. He told me the things I'm experiencing are to be expected as progression happens but that it usually is slow. He also confirmed there is nothing I can do besides surgery, so there is nothing I can do. He then told me he wants me on disability, I said how I already applied and he told me he would send my records in. He then asked about kids and if I planned on that because that's not a great idea/ not safe with my spine and that I need to talk to my gyno about it. Also that sooner is better. Not a conversation I'm looking forward too. I'm really hoping she has a different view. I don't even know when I will really look into that. All that I'll probably be keeping private and not go into any more discussion over until I really come to the time I need to figure it all out and talk to people about it.
Overall I was glad he supported the disability decision. It isn't necessarily a good feeling though, I'm pretty sure no one wants to be on disability.
Everything else has been ok. Nothing too eventful. The weather is getting nice which is good.
Oh I have my interview with disability next Monday. Maybe next update I'll have some good news.
Sunday, March 29, 2015
So. Tired.
I so over did it this weekend.
Friday I didn't do much but Marqui and I were up late for some reason watching shows. Didn't fall asleep till 2am about. Then I was up pretty early Saturday at 7.
Saturday was spent with Marquis mom and sister. We hung out, had pizza, it was a nice visit. We were there most of the day. Getting back home around 5 I received a text from a family I use to have at the daycare when I worked there. Asking if I was available to babysit from 8-11. I figured I would.
It was so good to see them! They have 2 girls. Big change from the 3 boys I'm use too. They were great and we had a good time. I got home around midnight and I was so tired. Marqui was up and on his computer. I was asleep so fast. I don't even know when he finished on the computer.
Today I decided to clean and that turned into straightening up a little to cleaning the whole place for 4 hours. I'm glad I did it but oh man. Everything hurts! I lifted heavier things then I should have. I felt ok at the time. I'm so tired now. Laying here typing this is even exhausting and I'm just on my phone haha.
It was a very busy, long days, weekend. But I'm glad I got to see how far I could push it.
Tomorrow I can't just relax. Well I can but I have to exercise first. I'm starting weight watchers and exercising. I need to get In the best shape I can to help with my health. So I'll push in the morning and then relax.
I plan on writing about it all on here a lot to help myself stay accountable. It's going to be tough but I know it's best for me and I know I can do it. Hopefully I really learn to love it haha.
Alright. Time for bed! Have a good week :)
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