Nightmares…

So its 2:15am and I cannot go to sleep for fear of having a nightmare. To some that probably sounds extremely childish but I can’t help but wonder what if. What if these dreams do come true how would they end. I definitely DO NOT want any of these nightmares to come true because most of them is either basically running for my life or having to shoot and kill to save my life or my family’s life. The only bit of relief I can think is I’m a somewhat skilled shooter and if it came down to it I could probably do it. I don’t want to but I could if my or my family’s life depended on it.

I can’t help but wonder if these nightmares are associated with something such as a medicine. In July I was diagnosed with Syringomyelia, which those of you that’ve read this blog will know, and my neurosurgeon sent me to see a neurologist because my migraines had gotten worse. So the neurologist started me on Cymbalta, which I think that’s what’s triggered them to start. I had a nightmare maybe every 6 months before starting the medicine and now I’m having 3+ per week and that makes for a horrible sleep schedule! I’ve also noticed that if I sleep on my back or when I’m awaken by one I’m always on my back. I’m also wondering if it may have something to do with Sleep Paralysis because when I wake up I physically cannot move and I can lay there for up to 10 minutes without being able to move. I did some research a while back and learned some tricks to bring you out of the sleep paralysis but it definitely doesn’t make it any easier to cope with!

I’m contemplating going to see someone but who in the world would you see about sleep!!! I had a sleep study done when I was in my teenage years but I don’t remember who I seen that sent me to have it! I do remember from that study that my brain never shuts off and I do not go into R.E.M. sleep, or so it said then. So I guess when I see my PCP I will ask her or either I will schedule a follow up with my NL.

One good thing I can report is in March of 2012 I had a surgery done for some female problems and since then I’ve lost about 60 pounds! I’m pretty stoked about that, even if others are doubting I actually have.

Oh and one other thing, any and all prayers will be appreciated! My 5 year old daughter who has CVS had an episode tonight, we’re hoping its over but we really never know!

So I guess that’s it for now! Will update again soon!!!

Much love and God Bless!!!
Amber

Christmas time!!! :-)

Hi everyone,

I know its been a while since I last posted! I’ve had quite a bit going on. My baby girl has been sick for almost a week and I am so glad she’s feeling better. She’s going back to school tomorrow! 9 other kids in her class has or had the flu, I just hope she doesn’t catch it!

So its Christmas time again! 21 days told Christmas and 19 til we leave for our new annual tradition of taking a vacation during Christmas! Its so nice to be able to do what you want on Christmas without having to go 101 different places! I know our families do not like it but in the last two years we’ve come to realize that we have to do for us, not everyone else. We went to Pine Mtn, GA last year and had an absolute blast! If you ever get to go there during Christmas go see the lights at Callaway Gardens, they for a phenomenal job! Also check out the Wild Animal Safari, definitely worth the money to get that close to so many different types of animals, with quite a few being exotic! This year we’ve decided to go to Collinsville, AL. They have two of the biggest and most awesome flea markets I’ve ever seen! And not to mention the natural beauty of the landscape. There is 5 waterfalls, I believe, in that area and they are magnificent! We are planning to go to Christmas at the Falls, which is Nocalulla Falls and we are stoked.

So to update on me:

I went to my family doctor about two weeks ago and got her to give me referrals to the two new doctors I found and I’m trying to get in to see. I have BCBS and technically didn’t need referrals but it was a requirement of the doctors office so now I’m waiting to hear back from them on an appointment. I finally found a neurosurgeon that has experience dealing with Syringomyelia!!! Yay! I called so many people in the southeast and when I would ask if they’ve ever heard of it, they would be like Syringo-my-awhat!!! So its nice for someone to know what I’m talking about! The cold weather is definitely taking a toll on me. My pain meds are not working as good since my doc changed me to the extended release version so its been a wild ride for sure! So I will keep y’all updated on my journey when I can! Oh and my family doctor told me that my B12 is extremely to low, so I’m having to take shots every 2 wks – a month. She’s gonna recheck in March and I hope its up because I’m sick and tired of being sick and tired!

Merry Christmas!

Much Love,
Amber

Deep in thought…

I am a big social media person! I’m on Facebook everyday and as I scroll through my news feed I can almost tell you who is gonna have the drama, broken heart, and numerous pictures of themselves posted in one day. Granted I’ve had some drama filled days in the last two years, losing two of the best friends I thought I had because they stabbed my family and I in the back and didn’t want to own up.to what they did. BUT I cut my losses and moved on! How can some people be so unhappy all the time?! Since being diagnosed with the Syrinx I have been living my days and carrying on as normal as possible because I never know when its gonna be my last day of “freedom!” If you have that much heartache, despair, relationship problems wouldn’t at some point you step back and say hey, maybe its me! Sometimes that’s not always the case but most of the time it is! And what is the deal with taking half naked pictures of yourself where you junk is about to pop out! It drives me up the wall when ladies my age and older are doing this! Anyways, back to my point! I can’t even begin to count my blessings each and everyday because there are so many! I have a beautiful, smart and funny little girl, a loving husband that I have no clue where I would be without him, an awesome family and some of the best true friends a girl could have! Since being diagnosed with the Syrinx I have found out who my true friends are. I have some friends that in had for a very long time that have basically just chunked me off to the side because I’m friends with someone else. OK, whatever! Obviously I wasn’t very important to begin with! That’s OK though, I know who I can count on when the going gets tough!

On another note:

My neurologist started me on Cymbalta for migraines and increased the Lyrica to 3 times a day. It really doesn’t seem to be helping because I’m still getting at the very least 3 a week and its getting old, fast! I go back to see him this week, so we will see where we stand!

My baby girl is going to be seeing a neurologist this week also because she has started have more frequent headaches and they’re afraid that they will cause her to have a stroke because her father had two strokes when he was a child. So were starting 50mg of Co Q 10 a day and they may start her on Periactin when we go back. She hasn’t had an episode with the CVS in a while so I’m hoping were clear of that for a long while!

Well I’m off to bed! I hope everyone has a wonderful Monday and week!

Love to all and God Bless!

Waiting…

Well I am sitting here at the Urgent Care Center in town because I am on Day 4 of having a migraine and I’m running fever, body aches, chills, and I just flat out hurt all over! So they’ve tortured me and did a Flu and Strep swab and is checking my urine. We’ll see what they say!

Pins and Needles…

The pins and needles in my right side is getting worse and more prominent. I’m having around four headaches a week and they aren’t small ones, they’re raging migraines. My left hand or should I say my pinky and ring finger were pretty much completely numb and it scared me to death! Well I go back to the neurologist this friday I believe it is. I need to make an appointment with my family doctor but I’m wanting to wait until one of the old doctors come back to town because I can’t stand some of the office staff my current doctor employees. I cannot stand being talked to like I’m stupid and that’s exactly how she always talks to me. I don’t know what that lady’s problem is but I’m not gonna stand for it anymore. Anyways I’m hoping things start getting better as far as the headaches!!!!!

It’s a Beast!!!

The rain is a silent beast that slides
right on in while you’re not looking! I’ve been in the bed the entire day today, other than going to get my baby girl from school! Ever since I started the new medicine last week I’ve kept a migraine! Today with the rain like it is my back has been screaming at me and the medicine I’m taking is giving me absolutely no relief today! Hoping to have a better day tomorrow! I have to finish getting my house in order before I go postal on someone! I’m trying to decide what color to paint my hall, dining room and kitchen. All three basically run into each other so I’m thinking the same color in all three will be awesome! I’ve also got cabinets to paint as well! I need help, any suggestions will be greatly appreciated!!!

Love to all and God Bless!!!

WAR EAGLE!!!

New Neurologist!

Hey guys,

Its been a little bit but I’ve been doing some crafts and its been keeping me pretty busy!

I went to see the new neurologist, Dr. Perrien last week! He was awesome, might I add! He did some nerve studies in his office because I’ve been having some really sharp, severe pains in the back of my arms, primarily the right one and my right foot keeps getting the pins and needles sensations. Everything looked good on the nerve studies and he sent me to have some labs done because he is thinking the sensation in my right foot could be caused from diabetes. I had an A1c, Thyroid panel, B12 and something else but I can’t remember what it was. Well the nurse called me at the beginning of this week and my B12 is really low and she said that I was borderline diabetic, although my A1c was only 5.6. So now I am going to follow up with my family doctor so that she can treat me for those things. He started me on Nortriptyline (I think I spelled that right) to try and help with the migraines and see if it will help with some of the pain in my back and legs.

Last Thursday, I seen Dr. Clark, the neurosurgeon, again and he said that I don’t have to come back to see him until next August!!! YAY! He seems to think that I Hydromyelia instead of Syringomyelia. Its basically the same and carries the same risks, except with Hydromyelia it is connected to the fourth ventricle of the brain. In the womb you have a cord thar runs down the center of your spinal cord and after birth it is suppose to close up. Obviously mine didn’t. So he is just going to keep an eye on it before we proceed with the shunt.

So this is where we stand right now as far as doctors go, hoping I can take a couple weeks off from going to the doctor because it seems that since diagnosis in July, that’s all.I do anymore!

I am going to have to call my family doctor because my blood pressure is staying high. Has anyone else experienced this? I would love to hear your thoughts, comments and stories!

Hope everyone has a wonderful weekend and God Bless!

WAR EAGLE!!!

OUCH…

OK, I know since I’ve shared my page on Facebook there has to be other SM sufferers following and I have a question!!!

About two weeks ago I started having this thing I guess I could say because it’s not really a pain but its not a cramp, in the back of my arm, tricep area. You know the feeling in your calf muscle after you get a bad Charlie Horse, how it almost feels like the cramp is still there but its kind of painful? Well that’s what the back of my arm feels like! It hurts for anything to touch it, especially if it lays on something like the couch for example.

Any tips of what I can do to help ease it off because my pain pills are not helping!!!

What signs and symptoms do you have? What treatment have you had or are contemplating? Where are you located and who’s you doctor?

Hope to hear from you all soon!!!

God Bless and Love to all!!!

Its just a waiting game…

Well, I’m sure if you’ve looked at the news (if you’re in the South) or maybe the Weather Channel, you know there’s a storm a coming! I’m in Baldwin County, AL and its not projected for the eye to come across us but we will be on the east side! 😦 Just in case you’ve never dealt with a hurricane, the east and northeast side are the worst!!!

Well this thing is all over the place! My thing is, wherever it hits its gonna affect someone so please keep everyone in your prayers!

So, enough about Issac! I had the 2nd set of Bilateral SI injections done Friday and they have tried to kill me! It probably didn’t help that my miniature cow (aka Ally, our dog who’s pushing 100 lbs) decided to jump on my hip when her Daddy got home! Well its starting to feel somewhat better, hoping it continues to progress! I go back to get the third set on the 10th, so lets just pray that my streak of luck continues!!! I also go back to the Neurosurgeon on Thursday and to the Neurologist on Thursday, the last guy didn’t do all that much, and then to my Ortho on Friday. All of this will depend on our wonderful friend in the Gulf of Mexico!!!

On a side note, Zoie has began her 2nd week of school and she likes it some days and others she doesn’t! I think her deal is that she doesn’t want to take a nap! I’m trying to tell her that she will be wanting a nap in a couple of years, LOL! Just hoping for a great year! OK, I am fixing to step up on my soap box for a moment! Yes, I pay good money to send my child to a private school and it is my husband and I decision! I love how people say, you really pay that much, YES WE DO!!!!! It could be a whole heck of a lot more and to get the chance to have our “2nd” Moma teach her, yes I will pay it! Our “2nd” Mom’s, is a lady that started watching me and my sister when I was about 6 weeks old and watched us up until I was in Elementary school I believe it was.

Well, I am on day 4 without the Lyrica, only because I couldn’t afford my Rx, and I can definitely tell a difference! The crawling sensation is starting to come back more and more especially when I am laying down.

Has anyone else noticed something like this? What symptoms or sensations do you have? Has anyone noticed a change in their voice?

On another side note, please keep my Nana in your prayers!

Well I guess I will update more later!

Love to all and God Bless!!!

Zoie on her 1st day of school!

This is Ally and Zoie on our way to school this morning!

Sorry y’all…

Hey guys and gals!

Sorry I’ve been MIA this last week, we’ve had a lot going on! In four days my baby starts “big girl” school and I’m kind of sad because she is growing up way to fast!!! I also want to ask that you all keep my Nana in your thoughts and prayers! She is most likely going to have surgery today, its either her appendix or gallbladder. Poor thing has been put through the ringer this last year but she is stubborn and hard headed and she is a fighter!

Well, back to the doctor again today! I told my Mom’s boss, I think it was yesterday, that I think were running a race to see who can go to the doctor the most! LOL

I had my SI injections done Monday and these last couple days is like a breath of fresh air! I haven’t been in constant agony and I’ve been able to enjoy the last couple days if summer with my baby girl! I’m hoping and praying that it will last a long time!!! The appointment today is for the Neurologist. Dr. C wants me to go to him so that he can rule out things like MS, ALS, Lupus. He said he could go ahead and do the shunt but he’s wanting to try and hold off because its a risky and very painful procedure because of the dissection of the muscle! On my last MRI they found yet another bulging disc!!! Its so aggravating sometimes but I know the Lord will not put more on me than I can handle and he knows my master plan, so all of my faith is in him!!!

Well, I’m fixing to head back to bed to try and rest some.before going back to the hospital!

Love to all and God Bless!!! 🙂