Updates! 2 New diagnosis's and surgery!

So, Life is crazy.

 My Last post talked about how I was flying out to SC in August, well that got bumped to September and I just got back last Saturday.

I was flying out to see this specialist to finally see if I actually have CCI (Cranial Cervical Instability). And that is a very definite YES! But as a shock to me, I also found out I have something called, Tethered Cord. It's basically where my spinal cord is too tightly attached to my spine. This is causing a lot of my symptoms too. It's usually addressed when you're a baby. But here I am, an adult and getting diagnosed with it. So Lets see how my progress on diagnosis's are:

IBS-C

Chonic Mono ( apparently not a thing)

Bells palsy bouts

Insomnia

Chronic Fatigue Syndrome

ME/CFS

POTS ( Postural orthostatic Tachycardia syndrome)

H-EDS (Hypermobile- Elhers Danlos Syndrome) - This is the one where I felt like I was getting                 understanding more of what was going on with my body.

CCI (Cranial Cervical Instability)

Tethered Cord

Wow that is a lot! Pretty much I have Had h-EDS my whole like, just undiagnosed as a child. The doctor said that when a traumatic event happens in some people with h-EDS (car crash, physical trauma, getting really really sick) It kind of throws you down a level and messes everything up with h-EDS. Since I was never able to recover, I lost of a lot of my abilities that were always fighting against my h-EDS. 

The doctor is hopeful I don't have to get my neck fused and can just get tethered cord release, where we can fix enough of my problems, that I can actually progress and gain those abilities back. If it doesn't help enough, onto fusing my neck.  There is a lot of literature you can read about all of this. My brain is usually to fatigued to explain it well.

https://www.youtube.com/watch?v=89TMJlyVTTw

That is a great video link about the tethered cord.

https://www.youtube.com/watch?v=oTH2s1MweJE

And that is another video, discussing the EDS and the CCI. 

I do not have Chiari, but he said I have the Chiari like symptoms side of things.

So what does this mean for me? I am going to get a Surgery called Tethered Cord Release, and I get to go back out to SC and get this surgery in about a month!  YAY me!???? Anyways, brain is tired, I will try and keep you all updated.

 My life lately.

 I have been attempting to garden. I have been able to do some, but not as much as I want. I was gardening last night and rolled my ankle, its a bit sore today.

I am actually all over sore today, I tried to defeat a weed. I believe it was a curly dock, and I didn't know those things had tuberous roots (like carrots, and sweat potatoes) I got it out finally but I think we both lost the war..... My body is in lots of pain today.....what was I thinking......

I am going to South Carolina in August! I am going to see a specialist, that deals with hEDS, and CCI!  Not sure what is going to happen, but I am nervous, excited,  and scared!

My newly installed fence broke......another huge wind storm came through, and knocked the gate part over and shredded some of the panels. At least it didn't knock my power out for 24 hours.  That was strange, I didn't realize how much I relied on power until then. 

Not much emotion in this post :) My brain is tired today. Its a go with the flow kind of emotion day. Does that make sense?  

Alright cya

crazy week!

 I have really got to post more just about daily life!

I seem to have bad bouts and that's when I feel like writing things down. It seems like attack after attack, but I get breaks inbetween, I promise! lol

This week has been difficult.

My body started getting attacked by the virus that causes my bells palsy and all my cold sores. Usually if its just a cold sore, I am not too worried, but when the nerve pain starts in my neck and head, I know its time to get into the doctor! The next thing that usually happens is severe neck pain, and then half my face will go paralyzed!  This usually only happens when my immune system is really down and can't keep it under control. I'm thinking that the second covid shot had a part to play in my immune system being down. My immune system was focusing really hard on getting an immunity to that, thinking it could tell it's a real serious threat and it was too focused on that and the other virus was like "heck yes! free reign". So I am on short round of steriod and antiviral!  This has seemed to work in the past, so hopefully it works great this time.

Also if it wasn't enough, I wanted to just sit in the sun on my hammock. I brought my huge furry blanket and laid it out on the hammock. I laid down and RIPPPP, I went down on the cement and my elbow took the brunt of it. I screamed (because I was falling), and my husband ran outside to check on me and found me on the ground....under my ripped up hammock. I was laughing and crying at the same time. My elbow was bleeding and hurt like crazy....I had put my hammock right over my cement, so I fell straight on the cement.  Oh what fun......

Woopdedoo

Hello, 

I have seem to add a new symptom to my symptoms....gagging like crazy for about an hour after I wake up (and don't even dare think that it is because I am pregnant). I look at my pills I have got to take...gag..gag..gag... I look at food....gag..gag...gag.... It seems to settle down about an hour after I wake up... Hopefully this is just a random symptom and it will be gone in a week or so like other symptoms I get.

Pregnancy is getting to be a touchy subject for me, It used to not bother me, but as I get older it is getting to me more and more. Do I want kids? Yes, the answer has always been yes, but after getting sick I kept thinking "I have just got to get over this, and then I can think about that", but It seems like after 11 years, I am not getting over this. If you understood, truly, what I go through each day, you would not want a baby to be added to this situation. I feel I will need a lot of help, and who even knows if I can have a baby? I already know I will need to be seen by a high risk pregnancy doctor because one of my condition. This is a personal subject for me, but I fet the need to write down some of my thoughts.

Recent Happenings here:

After a long time, my fence finally got installed! It is beautiful, the company did a good job I just wish they would have been better at keeping me up to date on what was going on and why it was taking so long. I was the one who had to keep reaching out to them.

We rescued a kitten, Or mostly my husband rescued it. Since I have this stupid sleep paralysis going on, he was the one getting up every two to three hours to feed the cute little thing :) Of course, my husband ( and me) fell in love with him and now he is ours forever.  Ollie is his name, and he has helped a ton with my winter depression :) He is a cuddle bug! Meep was never really that cuddly as a kitten, but Ollie is and I love it! 

Trying a new medicine, I really can't decide if its helping. I think I will stop it, since it might be the reason for my new gagging fiasco. Oh the joys of trial and error with a chronic illness. Moslty with me, it seems all to be my body going "error....error"

I have started playing a new game, and I am kind of addicted. This ark dinosaur game, it is kind of like minecraft but with dinosaurs! Yeah, it keeps my mind active, and not thinking about how yucky I feel at times :)  

Can't wait until warmer weather and when I feel a little better! I need a trip to Florida or something, but ya know, stupid covid! 

About covid, I am so excited to get my shot! Yes, I know half the people are scared of the shot, but I have done a lot of research! I hope I can get out and do more stuff! 

Yellowstone???

I have been looking at all the blogs I used to follow...none of y'all are updating your blogs for years....lol

I have consistently gone down in posts. I need to do better.

This year has been quite crazy and crappy for all of us. 

Needless to say Yellowstone was a big bust for me. I was so anxious about going and the corona virus, I maybe should have just stayed home, but I didn't. Lo and behold, I got the stomach flu/food poisoning, the second morning day in, and of course that is just miserable. But then my husband also got it...He is the one who absolutely loves to be out on the geyser basin, so I felt really bad for him. Of course he felt 85 percent better the next day and I am still super weak and nauseous anytime I do anything. 

I cut my trip short.... It was just getting to torturous for my body to be somewhere not home while feeling really really really sick. I know it is going to take me a minute to get back to my normal chronically weird self and I knew that wasn't going to be before the Yellowstone trip was over. 

LIFE

My life lately

My black out spells are worse.....my rate is constantly above 100 anytime I am standing.....so that is my update.......on my life :)

I went to Yellowstone a week and a half ago, wasn't able to do much,  Left early, did to much when I got home, and I have been sleeping a lot and at the weirdest times.... So I am in a bit of a funk, and trying to get back somewhat of a normalized schedule back. 

I hate having a chronic illness, and people who don't even know my situation giving me a hard time about missing an appointment (a rude doctors secretary) should live in my shoes for a couple of days, and then maybe she wouldn't be so rude, and it is the doctor giving her a hard time and she is passing it onto the patients, then the doctor should live be given a chronic illness for a couple of days.....

YOU SHOULDN'T"T GIVE ANYONE A HARD TIME IF YOU DON'T KNOW WHAT THEY ARE GOING THROUGH FIRST!!!!!!!!!!!!!!

Let see if I can write all this down

I know this is littered with many errors....ugh my brain doesn't work well some days, but I would love anyone to correct the mistakes and give me insight on how I can make this more of a piece that can be understood. because my brain literally is doing this... I promise I won't be offended :)

I have had this dilemma brewing in my mind and I guess literately my body for a while now.

I really feel like if I would to just write it all down then maybe my brain will feel a little bit better and not so unorganized.

I guess I should start at the beginning, of where my brain started going crazy. I got a genetic report done, just for the fun of it to see where my ancestors are from. It was fun to see, but I also had the option to download my RAW DNA. I found this really cool site, that you can pretty much get all  the data that is out there about DNA. It's a research based company. The health reports that are generated from ancestry sites usually get their data from this company. So I was able to pay only 5 dollars and get a 40 page genetic report. Wow, it was a lot to sift through, since it wasn't in a easy readable format, but that is ok, I figured most of it out.

It came back with a bunch of new things for me to research! It was great! That's half sarcasm :) I got a lot of things that were heterogeneous and did the research and determined that I didn't have those conditions, but towards the end of my digging,  I came a crossed a term that I hadn't really hear of, called Elhers Danlos Syndome, or EDS. Now this wasn't a Heterogeneous or homozygous Gene for EDS it was a  "this Gene is related to a ton of people who have EDS and we haven't quite figured out the connection". So I started researching this EDS.....and the Hyper mobility EDS was me to a T!

https://ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf

Just in case you were wondering, I added the picture above explaining a bit about when I filled out the document. It isn't that pretty, but I think it gets my point across.

This is the new criteria and I according to this I qualify at being diagnosed with EDS, but the one problem is that it seems the only doctor who will diagnose me is  a geneticist, And there are only two in the state I live in and they both have year waiting lists. Even if I get in I am not sure how long it will take to get an actual diagnosis, maybe that day? but who knows.

My thinking is that I have always had EDS but it didn't effect me enough to get a diagnosis and it is super rare. And when doctors know that it is super rare, they just assume not to check for it.

So here I am doing research on this EDS when I notice that the lady who has ME/CFS (the condition I have also been diagnosed with) that made a very popular documentary, had a ton of updates on her story about what has happened after her documentary came out. She was contacted by an EDS doctor who had watched her documentary and was like "hey, that MRI of your brain was not actually normal"

https://medium.com/@jenbrea/cci-tethered-cord-series-e1e098b5edf

Here is the story, because I do a terrible job at reiterating it.

So next thing she knows, she is basically diagnosed with EDS and there are a lot of people with EDS that after a really bad viral bout get whats called Cranial Cervical Instability that caused them to have a whole slew of other symptoms including the very debilitating POTS! SO if you you have kept up on my story, you know that I was pretty dang healthy until I came down with the Epstein Barr virus about ten years ago. So my thinking, I have always had EDS, but led an active lifestyle and it didn't give me any big red flags to actually get diagnosed.  I get hit with an incredibly stupid virus, and my life is never the same. I have been diagnosed with POTS, if you were wondering. I feel like I am just connecting the dots. One of those dots, are my face tingles and bouts of face paralysis, that is a sign of  Cranial Cervical instability.

 I am adding a lot of the resources I have found of my journey, this is from a PDF about connecting the dots on EDS, POTS, and CCI. The above picture is from one of the pages, I checked everything I had. I have pretty good vision, so of course I didn't check that.

https://www.ehlers-danlos.com/pdf/2018-EDS-Webinar-Chopra.pdf

This link above is where a great resource on all things EDS, CCI, and POTS. Its crazy as I am reading through the article I just keep shaking my head in agreement.

I could keep putting article after article in about why my brain is heading in this direction.
If you read the whole story of Jennifer Brea and you know me personally I am not nearly as bad as she got.   I am not sure what my next steps are, I would love to get rid of my POTS, but it seems like it will be a long road to even see if I qualify to get my neck fused together ( if you don't understand how I jumped to neck fusion surgery, go back and read the first link I put in).  and honestly I would rather go down any other avenue to see if I can find relief from my symptoms before having to go through what Jennifer Brea had to go through, to just see if she qualified for surgery....ugh talk able rods in neck, being woke up after rods are placed, get a bunch of test done on rods, then put back under anesthesia to take rods out.......just read her story and you will know what I am talking about.