June 30

So er on a Saturday @ duke: downright awful. We arrived around noon & didn't even get to a room until 8pm. Just sat in the lobby. The triage doc didn't listen & had photos done of my brain instead of my stomach; bc whenbshe heard shunt she automatically assumed brain. I was honestly at the front telling the to take my iv out when they said they'd get me a room. & finally when we spoke to several sets of docs, they said all was normal. Why did I have to wait around 8hrs to hear that? So we asked to discharge & @ 11pm the nurse come back & says they want one more ct. So we didn't get out of there until around 3am. 

My er nurse was pretty absent in all of this. But she did do one thing for me that has confirmed my suspicions. They insisted on giving me a migraine cocktail of iv benadryl, compazine, & fluids (refused torodal). That actually took away the pain in my stomach. I believe that my mast cell (mcas) is rejecting the shunt. So I'm having a huge flare up of histamine driven pain, anywhere the shunt is. Of course that was rejected. However if I have to keep this in, I will have to find a way to make my mcas happy. If I don't I will go down the road of not eating again just to avoid any pain.

Anyway, to sum up I'm still alive & all is well I guess. I will be sleeping most of my day away.

Thanks for the concern & prayers!

June 29th

So the night before my aunt left, she made me promise no ER this Friday. Well I kept her promise 🙄. Otw to the er now. When will this end🤷‍♀️

Will update when I know more.

June 22

So I want to stop a sec & take note of a few things. Yes I am having a treacherous domino effect from a surgery that will likely be a difficult recovery. However, there have been so many people that have helped us along the way, showing us how amazing this world can be.

From my aunt coming to spend time & be my support while my parents work, when she definitely has other things she could be doing.

My father who goes out of his way each late night er trip that is way past his bedtime.

My mother taking time from work & vivi to sit with me in the hospital, when the drive is torture on her foot.

Our amazing neighbors, who have cut & weed whacked our lawn; sent fruit baskets & cookies; and are constantly checking in to see how I'm doing.

Then their are those who cant necessarily give of their time, but send cards & flowers to brighten my day.

I appreciate each & everyone of these acts of kindness & don't want anyone to think otherwise. I sometimes just get so overwhelmed with the current situation that I forget the little things.

6/21

 edit: it turned out to be a cut. Clearly no telling how I got it, could easily be from contacts or from one of my many surgeries. Will be getting steroid drops as soon as the store opens.

Well positive note: I think the shunt is working. What feels like leaking must be the fluid flowing into the shunt.
Negative: otw to the er again (kannapolis so not as far). I think I have allergic conjunctivitis or allergic pinkeye. Hurts like crazy! & seeing as I'm maxed out on my antihistamines, I don't know what else to do 🙄

June 18th

I'm finally home!! Discharge took forever but I got home around 1pm. I've gotten myself on a strict med schedule which will hopefully keep me from having any severe pain. Unfortunately that involves me taking caffeine pills for my migraines (I was caffeine free for over 10 years).
So looking back over my posts I realized I didn't explain what this past surgery was. Friday I was in the er and admitted; and Saturday I had surgery. Basically they put a shunt in my back where the leak is coming from. The shunt redirects the leak from the incision to my abdomen where it is theoretically absorbed. That was probably one of the methods every doctor tries to avoid at all costs, but given I had leaked a large volume at least 3 times in such a short window, they felt it was the only viable choice.
I feel like the next couple of days will be crucial I'm determining whether this surgery actually worked.
One of the main problems I'm having, besides deep pain @ the incision sites, is severe positional headaches. This is due to the shunt & is why I'm on the caffeine. The caffeine is supposed to be temporary until my body can adjust to being upright again. I also believe I can feel the pain from the shunt when it is working. I'm hoping over time that too will change.
Anyway thank you all for your continued support & prayers. I am so grateful for my neighbors, my family, & friends who have stepped up to help out!
I have a follow up on July 3, so hopefully my body can keep itself together & heal so my veins don't have to experience any more torture.
I'm planning on making a blog for those who aren't on fb. It will basically say the same thing. But I didn't realize even if i made my posts public, the only way they could be viewed was by having an account.
Thanks all & hopefully the worst of it is over!❤❤❤

June 17th

Update everyone. Yesterday was 1 day postop. I was doing pretty well; I was eating and even started walking. However early this morning, I started feeling terrible. The chest pain I had when standing turn into shoulder, back, & spine as well. The docs weren't concerned & they began the process of discharging. That's when the severe headaches hit. Anytime I sit or stand up I get a severe debilitating headache. Everyone was telling me to push past it. I got up to go to the restroom, & I vomited. Finally everyone decided it might be smart for me to stay one more time night. I'm still struggling keeping my head upright, & while of course I'd rather be home, I'd also rather not get home just to turn around & come right back. So we'll see how this night goes....

June 16th

Hey everyone, I want to apologize if I haven't responded to you in the past day. I had my surgery yesterday super early, & everything went well as far as I know. But I have been in unbearable pain since getting out. I tried eating a bite of something & the pain escalated to every time I took a breath. I honestly can't say if all of this was worth it because I've been dealing with so many complications that my body is ready to shutdown.
I'm in the ICU again & they had initially planned on discharging me by the end of today (Sunday). I personally can't see that happening. 
So I truly appreciate the prayers & those checking in. Please keep them coming! I promise @ some point I'll get back. But right now I have to focus on my treatment (because if I don't who knows what these docs would do).
Ps: for father's day, dad wants one of the hospital recliners 😄

June 14

Soooooo.........
I'm back @ Duke er again. My sutures are leaking 😒 I hope they get things right this time. Please send prayers & good wishes!

June 12th

Hopefully last update for a while.
I was discharged yesterday. I'm glad to be out of there. I got amazing care from the nurses but the doctors treated me like any other patient, which clearly I'm not. They took away everything iv including fluids which are necessary for another condition POTS. I kept being told I shouldn't even be there anymore; most patients recover in just a couple days; I was there for 12.
My pain is still severe most times, but my hope is it will at least lower over the next few days. The main concern that lays in the back of my mind is that the leak still isn't sealed. Time will only tell.
As always, thanks for the support & prayers!  I am so grateful for those who have reached out  & for my parents & aunt (who is helping me now that I'm home)!!❤❤

June 10th

Blood patch is done! Flat for another 24ish hrs. Then hopefully home!

june 10th

MRI results came back. Doc was being overly paranoid & the fluid has cleared up significantly. They are trying to fit me in with radiology today to have my blood patch. It's looking like I may (she says cautiously) have a chance at going home tomorrow! 🙏🙏❤

June 9

Well everyone, this shouldn't come as a surprise anymore, but plans have changed again. I've started leaking @ the drain site, which makes the doc concerned there is more fluid buildup in there. He wanted to stitch it close. But after discussing things, it made more sense to do an MRI to see if there's any extra fluid forming so we could determine our next course of action.
So no blood patch tomorrow. & I can't imagine I'm going home Tues.
I think for people who stay over a week inpatient, there should be a suite or room upgrade. My room is so small the bed is maybe 2 feet from the parallel wall.
I hope everyone is doing well. Thanks for the prayers❤

June 7th

Today had it's ups & downs. Once everyone was on the same page with the med protocol, my pain has been for the most part tolerable. However, because of EDS I have really crappy veins that look good but actually role & collapse. After having 3 ivs fail & 4+ attempts to get an iv which resulted in blowing the vein or collapsing it, I insisted on another option. The only thing they would allow was a midline, which is a long catheter the goes up a main vein in your upper arm, so it stays in place longer, but it's not as risky as a picc line
 Even though I was scared because everything vein related causes me severe pain, the procedure went smoothly. The rest of my day will probably be spent making up for the days of sleep I've lost due to pain.
They are starting to incline the bed to see how I tolerate it. Either tomorrow or Sunday, they will try to get me walking. Monday I will receive a blood patch & if all goes well, home on Tues.
Thank you all for keeping me in your thoughts & prayers!

June 6th

Edit- I've been moved to my old floor, room 4122.

As of now still in the ICU. SE-18. Had a rough night. Docs wanted to pull all forms of iv pain control just 1 day postop after having 2 back surgeries in a 3 week timeframe. I have multiple conditions, one of which slows down my ability to digest things. Since they had not really gotten me on any consistent schedule for a decent timeframe, I was not able to feel the relief from oral meds. Around midnight, the first one finally kicked in. So it can take my stomach a good 24hrs to feel any relief from oral meds.
Let's just say last night was a huge battle. I finally came to an agreement with my surgeon to adjust oral meds & have an iv one on hand for breakthrough pain. His concern is if I take too much iv then when oral finally takes effect I will be too sedated to function.
So we'll see how this pans out.
Thanks for all the continued support & prayers ❤❤

June 5th

Ok! So I had surgery yesterday morning. They had to cut through muscle, shave bone one 3 different sides, put in a membrane patch. Packed it. Glued it. Sutured it. & put in a lumbar drain for safe measures.
When they got in, the realized my tear in the dura was much larger than expected. About the size of a half dollar coin. The surgeons could easily see dura was very thin, which is why it tore so easily. It was tearing as they were stitching it up. I will mention I asked my previous surgeon who did my tethered cord surgery if the dura seemed thick or thin, & his response was that all dura is the same in eds.

I was taken to the ICU. I've been in there over night. I was in severe pain & had to receive multiple forms of pain management including iv. I was able to get some help from Ashley Reber initially to get the nurse to understand the depth of my pain.
I am on flat bed rest for at least another 24-48 hrs. After they will slowly start to incline the bed. Eventually they will clamp the drain to make sure it has sealed, then plan on a blood patch to cover up the microscopic hole left by the drain. The surgeon believes I will be here until at least Monday.
I'm so grateful for the help & support from friends , family,  & even practical strangers. & I love my nurses. Once I figure out if they want to keep me in the ICU, I will post the room I'm in.
Thank you for the continued prayers & support ❤❤

June 3

So this update is brought to you by the girl who is starved to death 😁. Today I was without food & water waiting on my procedure to be schedule. Well, neuro, ortho, interventional radiology, & others have now decided that doing the drain is not the best choice (wish I knew that earlier so I could have eaten). They've all had multiple meetings over my awesomeness & complexity & decided that going back in to surgery is the best option. They intend on doing multiple techniques to seal up multiple layers hoping to stop this leak. It is scheduled for tomorrow.
I have been told that just stitching the top layer of skin would have by no means fixed the leak I have given the size. So I'm glad I didn't continue my care with my previous doctor.

Depending on recovery & methods used, I will be here 3-4 more days.
Thank you all for the prayers & support. I've met some amazing people that I barely know with the kindest, loving open hearts, ready to help me as much as they can! ❤❤❤

June 2

Because I don't have any update quite yet, I want to say something. Many people in my life past & present, know that I have a severe phobia of needles. But most don't understand what triggered that phobia. Because of my EDS, I was never numbed properly before a procedure, still am not, so the anesthesia used such as lidocaine, would wear off in seconds compared to an bc average person that would get at least twice as long. During procedures I would scream I could feel it, & the doctors would think I was just being dramatic & keep moving forward.
I also have mast cell (mcas) at play during these situations. Whenever a foreign object enters my skin, my body sees it as an attack. So what should be a quick & easy numbing or iv where you say ouch, ends up being a traumatizing & severely painful experience. So my histamines over fire causing that severe pain.
This is just something to consider when people tell you about their pain. We all have things that may make our pain tolerance worse or better than the average person. Always ask before you jump to conclusions ❤

June 1st

After a long night in the er & an MRI, a plan has finally been made. I had a meeting with neuro. They feel my leak is too large for a blood patch. Their idea is to put in a drain (I've insisted on twilight due to my anxiety & hypersensitivity to pain) & let it collect in a bag for a few days. This will hopefully allow it to seal. This is their most conservative option. I will be here for probably at least 5 days. I do feel like these doctors are taking my leak seriously & I'm in safe hands. I'm still in significant pain but they are treating it.
A side note, the er @ Duke is one of the best I've been to. So if you ever have an emergency 😅
Prayers are always appreciated & I will update when I can. Thank you so much Dad for staying through the night in an er room!

June 1st

Surprised to find happy mail, a get well card, from my uncle Randy & aunt Bernie today! It really helped brighten the super crappy day I was having ❤

may 31st

So I was all prepared to give a positive update today after having my sutures removed. Well instead I'm otw to Duke ER for another csf leak  😒 in a terrifying hail storm! The leak is actively coming out of the sutures & is much worse than last time. My neurosurgeon wanted to have a local er put a stitch in to solve the problem, even though we've already done that. & his pa told me I'd be best going to Duke or chapel hill than coming back to Charleston. So, here we go again! 🤷‍♀️

may 23rd

I am otw home to Salisbury. I was  told that even though I am still in intense pain and could stay in the hospital, it would have no effect on what meds I received because I'm getting as much as they allow. So we decided to pack up & head home so I can be more comfortable (& family can get back to work). I am on strict restrictions for at least 10 days. Just sleeping, eating, moving as tolerated with no bending, twisting, lifting.
This will give my cerebral spinal fluid a chance to hopefully get back to normal & allow my spine a chance to heal. I'm so excited to get to see my animals again (& not be a lab rat anymore)!
Thanks for everyone's support & prayers. & for the amazing help from the nursing staff & family & friends who've have been helping ❤

may 22nd pt2

Ok last update for at least a day.
They finally saw the leak. They have stitched it up & plan on watching me for 24hrs to hopefully discharge & send me home the next day. Thanks for all the prayers & support ❤❤

& here's some stitches for your viewing pleasure.

May 22nd

So I'm on a new floor, different from last time, but the staff is even better!
I want to make a comment about something I've just started dealing with, because this is important. Everyone feels & deals with pain in there own way. Some cry, some deflect, some scream, honestly I've probably done a bit of everything under the sun. I am in constant severe chronic pain because of my various conditions. All pain to me even when severe I just get used to. So even if it was making me scream one day, the next I'm biting my tongue, next smiling.
 People especially doctors & nurses should not judge anyone when they say there pain is severe but they're not screaming. It's unprofessional & it loses that trust within the relationship. It's tough enough being in the er with my conditions, I don't want to have to have every single step & word I say evaluated!

may 21st

Update! So my last day recovering in Charleston to prepare to go home tomorrow has been put on hold. I am having a possible cerebral spinal fluid leak from my incision. They had done an MRI & I'm borderline so I'm in observation again!
The day has been taxing on me & my mom. With 2 early morning scares then being here since 10amish. I so wish I hadn't sent everything home with my dad🙄
But I will be back on the floor that took care of me last time, so they should be prepared. The er staff was a bit eh...
My mom is being sent home for sleep so she can get back to her awesome self tomorrow.
Prayers are appreciated & much thanks to my mom!

may 15

I made it through! My surgery was quick, & the staff here is amazing! I am in a ton of pain but hopefully after a day or 2 I'll be feeling better. Thank you once again to my aunt & dad. You 2 have been wonderful! Thanks for all the prayers & keep them coming❤

may 14th

Well I've made it to Charleston. Got through preop & pt consult & took time to go to the beach (it's been over 5 years!) My surgery for tethered cord is tomorrow & I will be around for another week recovering. I'm so grateful for the help from my aunt & dad!

may 2

May is Ehlers-Danlos awareness month! My journey to my diagnosis has been anything but easy. I am blessed to say that I don't experience the severe everyday common joint dislocations that the majority of people do. My dislocations are invisible (like my disease). Over the last year I've been collecting diagnoses like candy that confirm my EDS dx. I am dealing with constant subluxations (partial dislocations), tmj with severe jaw deviation/dislocation, craniocervical instability (my occipital bone is completely detaching), tethered cord (my spinal cord it attaching to my spine but hopefully a hard collar is all that is needed to correct it), EDS again, mast cell activation syndrome (mcas) which causes severe & worsening reactions when exposed to triggers, mastocytosis enterocolitis (is inflammatory & only effects the gut), POTS, & much more! All of these conditions are way more than any one person should have to handle but clearly I was given the strength of 1000 men to continue on this fight!
In 2 weeks I will be planning on going to Charleston to get my tethered cord surgery done in hopes that it makes some of my daily routine a little easier. But I am a severe risk for surgery so my family is worried. I believe I will have to start going out of state to get the best care for me.
I carry on this fight for everyone out there & to help bring knowledge to a growing medical field. They refer to an EDSer as zebras because in medical school they are taught when you here hoofbeats think horses not zebra & with eds they have to think out of the box, a zebra. Well I think I'm even further out of that box, because most doctors don't even know what to do with me. I'm a unicorn!
Anyway I digress. Please I ask for prayers & support. I am always an open book to kind inquiries 💜🦓🦄