life went crazy again...

 Life went crazy............

I maybe will have the brain  power to write it out properly someday ,long story short:

I flew home 3 days later, Sat around on my couch/ bed for 6 weeks. A bump started forming a day before we left, but was assured by the on call doctor that it was normal and it was probably just a bruise forming. I watched that grow in size for six weeks...finally got a hold of the actual doctor, and had to fly back to SC to have emergency surgery because it was a spinal fluid leak.  Went in on a Monday to have it repaired, didn't find a leak, was still leaking spinal fluid and had another Emergency surgery on Thursday, where he was finally able to locate the leak, which was actually two leaks..... UGH... my husband catches covid and is quarantined to his hotel room, and I get to lay in a hospital, far from home, all alone....for 7 days. 

I get out, had to uber from hospital to hotel, stay in a different room and recover enough and wait for my husband to not be in quarantine anymore.. Flew home, which seemed bumpier then normal and I was nauseous half the flight.

 I finally made it home and took things really slowly, made sure to not twist, bend, pick up anything for six weeks. Then slowly started progressing back into doing some things. I was cleared for physical therapy and started that in April. I am sad to report that my POTS is still just as bad as ever. I am gaining muscle and getting stronger, but it has not helped my POTS at all :(  I have about 3 weeks of PT left and I am assuming it is not going to change it.  I have my next appointment coming up with my Neurosurgeon soon and I think he will probably schedule me for a Fusion surgery. I will continue physical therapy as long as I can before the next surgery to be as strong as possible for that.

All in all I don't think the surgery was a bust, It has helped with other things, I do feel like it has loosened the bottom half of my body and I have been able to gain muscle from my legs down. Any kind of exercise I do with my arms and shoulders still causes a lot of pain, but hey at least I have a muscly booty now! lolol (ok not really but trying to make a joke). It also really helped with bladder urgency, I won't go into that, but just saying for future reference. I am sorry it took so long to update.....

After the Hospital discharge

My husband drove me the short drive to the hotel. It wasn't to bad because I had gotten a dose of Dilodin before I left.  I was pretty wheel chair bound by this point. Only able to to walk a few steps at a time, so it was nice that I had brought my own walker/wheel chair with me.  Got to the hotel, got comfy and slept really good over the night.   I was supposed go home on Thursday, I should have picked the refundable flight options, even though they are a bit more.  I had a follow/discharge appointment on Wednesday. For the next two days I was on a constant routine of pain meds and I was still having a terrible headache and terrible neck pain.  It was weird, where they had actually cut in to me wasn't that painful, compared to the other pain I was having.   By my appointment time came Wednesday, I was in so much body pain I just bawled through my entire appointment with him.  My appointment was with Dr. Patel's Assistant, but honestly he WAS THE BEST!  He let me cry and listened and understood. and acutally told me what had been going on and what I should be expecting in the near future.  Found out that this surgery is actually a 3 month recovery process! Before I had the surgery, I was thinking it would be about a 2 to 3 week recovery.  We switched up a bunch of medications. My body had so much inflammation, he put me on a short term steroid, and also found another muscle relaxer that wouldn't make me so dizzy!  This is where the decision came that I was not well enough to travel,  

It was within 24 hours of our flight home, and I guess if its in that time frame, it is nonrefundable.... 

One Extremely hard Week

 The Last 2 weeks have been insane! I am pretty sure I will have to have some sort of therapy! I am being totally honest and serious about that. 

This post might take a couple days to write, as I am still recovering from surgery, but I really wanted to get it all written down.

I had a Spinal surgery on December 6th 2021-  I got my spinal cord detethered from my spine.  If you have followed my blog so far, you know I was diagnosed with Hypermobile - Elhers Danlos Syndrome, and after that went to a specialist out in South Carolina where I was diagnosed with Tethered Cord and Cranial Cervical Instability.  This specific Dr, likes to take care of the tethered cord first, before dealing with the Cranial cervical instability, because in a lot of cases you can put off or not even have to have fusion surgery to fix the Instability in your neck.  The tethered cord has been preventing me from really ever regaining my strength back in my neck, and with this surgery I (hopefully) can gain all the muscle I need to help my instable neck.

The surgery Day was pretty typical. Arrive at hospital- get checked in- IV put in, meet with all the doctors, then go in for surgery. It was about an hour and a half surgery, and it went well. No complications doing the surgery, I have even read all the notes from the surgery, and it was found that my filum (a part of the spinal cord) was non elastic. Which is exactly what they were looking for, when doing a detethering surgery. Basically my spinal cord was way to tight and causing lots of issues.  

I remember them waking me up, of course, I was extremely tired and don't remember  a lot except for being wheeled around to a couple of different rooms, I don't even remember exactly when my husband started talking to me.  They started me on a regiment of pills, and this is where it gets complicated. Apparently I have a very bad reaction to Oxycodone,  I remember having a slight headache after my first dose and told them and they suggested,,, of course...more pain meds...which meant more Oxycodone. After it kicked in I was greeted with the worst head pain I had ever been in, It was so bad that I was suicidal! I literally couldn't handle the pain in my head and I wanted my life to end so the pain could be over! This was in the evening, and so it was harder to get a hold of doctors, I begged the nurse for something else to relieve the pain! But all they kept wanting me to take was the stupid Oxicodone, I was in so much pain I couldn't get out why I didn't want Oxi any more.  I really feel like this was a newer nurse and didn't exactly know what to do. the only medicine I knew was Ibuprofen and that is what I begged for, she didn't try to get me on any other pain meds. I wish my brain could at least of expressed to, please ask the doctor to get me anything else besides oxy, If my brain was in the right frame of mind I could of asked for morphine. I feel like this nurse failed me a bit, as in not giving me any option then to just suffer. They finally let me have a dose of Ibuprofen and I finally fell into a very unrestful sleep.  I also forgot to mention, I was on strict orders to lay flat until the next day. .....ok I have to stop.... I am giving myself to much anxiety thinking about it....

Alright - I am back :) Took me tow days :)

The next morning I was still pretty miserable, but they were allowing me to sit up more and that relieved some of my body pains, I still had the headache, but it was at an 8, instead of a 10.  It was just a miserable day, because of the pain and they kept trying to give me more oxy, for it....by this point ...I was just getting frustrated at the nurse because I didn't feel like I was being heard! OXY was what was causing me the pain! After the shift change though, I got the most amazing nurse! She had been been a nurse for 19 years, and definitely new the ins and outs of everything. She got me another headache medicine, and helped adjust me into a position that got my headache pretty much gone! It was a big relief! I slept a lot that day, and by the evening they had physical therapy coming in helping me sit up and actually stand up. I was pretty dizzy standing, but It felt so good to just be sitting up! I felt like I was for sure going to be released the next day!  I slept ok that night, I mean as good as you can in a hospital.  

This is where is starts to go downhill again.... I woke up by another nurse putting my bed back to a laying flat position. I was confused, and asked her what she was doing. This nurse (which I had for two days) didn't have the greatest bed side manner. She simply stated I was back on bed rest, and to lay flat today.  She didn't really give me a good enough reason as to why either! I was really mad, My husband hadn't even been in yet and when he came in, I couldn't give him an answer as to why I am back laying flat. We both thought the day before had gone so much better. Oh, so a little side note here,  I had been visited by a doctor at like 5 or 6 in the morning. I can't remember what we talked about, but seriously why do they have the doctor come in when I am so out of it! 

That was another awful day! My pain came back to my head (laying flat on my back, gives me headaches) My Neck killed me, my whole body ached! Those hospital beds are just awful, and the pillows are awful too!  I have learned that with hEDS, comes a very sensitive body.  After a lot of trial and error, I finally found things that help my body not ache so much when I am in my own home. Of course, at a hospital, I had none of those things!  I didn't even care about the place where I had actually had surgery, because the pain everywhere else was way worse! I missed my favorite nurse so much!! My anxiety spiked again and I was just balling my eyes out that night (thursday). Thankfully I had another amazing night nurse! She got me on stuff to help my anxiety, and noticed a med that I hadn't tried yet for my pain. It was a short lasting narcotic that was given through my IV,   (dilodin). and boy oh boy! it zapped all the pain I had been having all week away within minutes! I felt like it was a miracle! WHY didn't the other nurses suggest this??? Maybe they  did? who knows I was pretty out of it half the time. Anyway, I fell asleep and slept about 4 hours straight when I woke up in pain again. Another dose of the Dilodin and I fell right back asleep. I was on other pain meds, but this one seemed to actually work.  The next day I was back with the nurse with the not great bedside manner and do you know what??? She made things worse....again.....She kept denying me the dilodin, even though I new I could have it every 2 hours, I was only asking for it every 4 hours! What the crap?!   Also I was still on orders to lie flat! Which was really just hurting my body more in my opinion. I feel like the nurses need to get on the same page....some were like oh, your still having pain after the other meds, ok lets get you something else, and others just plain refused.....What really bugged me is when this nurse ( I am sure she was trying to joke) suggested that we switch places! like "I wish I was the one laying in the hospital bed, and you were the one up and doing stuff!" Seriously??!?!?! Did she really say that? I actually was so out of it, I didn't get the joke until she left the room and my husband started saying how rude that was to say.  I would have switched her  places in a heart beat! I have been chronically ill for 12 years, been in the most pain I have ever been in all week and she wanted to switch me spots? Man, she needs to sort out her priorities (lol, Harry potter reference)!

Anyway, Thankfully, I had another good night nurse, who was willing to give me the dilodon every four hours to help the break through pain, and guess what?! The next day my most favorite nurse was back!!! Honestly,  one nurse can change everything! I felt very well taken care of anytime she was my nurse!  By now, I had finally an answer as to why they kept laying me flat. Apparently my drain was putting out more then normal amounts of fluid, and along with the stupid headache they felt it was best to keep torturing me. Ok, yes I know now that it was for my own good, but back then I felt like I was purposely being tortured because I had given the doctor a grumpy look for waking me up at 5 am everyday. Your brain doesn't quite think logically in the hospital, when you have been in so much pain, and on many different medications. It was Saturday by this time and they finally took the bed/lay flat orders off and I was allowed to sit up 20 degrees! It felt so good on my body to be able to even do just 20 degrees.  Next thing I new, the doctor (who kept waking me up at 5 am) was coming in to take my drain out!  Again, both my husband and I were confused at the sudden switch, but since my husband was there and I had written a list, I could actually ask coherent questions (along with my husbands help). Since my output from my drain was consistent, my doctor came to the conclusion that I was one of his patients that just produced more fluid then the average patient. It is uncommon, but since he is worldwide known for doing this surgery,  it does happen from time to time.  They were also worried about a spinal fluid leak, but determined that it was (if any), small enough to heal on its own. So I could still have a small leak, but they just aren't 100 percent sure. 

I was able to get out of my hospital bed in the late afternoon and take a walk around the hall! It felt good to be up and getting all the kinks out of my body. Yes, my back hurt, but I didn't care, I was finally up! I guess I did so good that they said I would probably be discharged on Monday (it was Saturday) . A whole week in the hospital, when it was supposed to be a 3 day stay! Even better, thankfully, I was discharged on Sunday evening!

I would really like to thank that one nurse, because she made the biggest difference! And Also My Amazing husband! He was right with me through the whole thing! I know it was extremely hard on him to see me in so much pain, and I never would want to have to see him go through what I went though, but he was right there, the whole time holding my hand, stoking my head, or telling me random crazy stories to keep my anxiety at bay! He is truly amazing!

Stay Tuned for more of my story! Yes, there is more! But for now this concludes my hospital stay story

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!