Undiagnosed: A Story of Purgatory, Part 2

I’m going to knock on any wood available surrounding me right now.. because it’s now April; a time for seasons to blend & transitions to make us feel brand new.

January didn’t start out great & February was not what I expected to say the least. March? Things got worse. I am not that person that says “well Jan & Feb & March didn’t go as planned were shit, is this really how my 2017 is going to be!?” But I am also not the person to sit back & wait for things/watching things happen. So far in 2017, it has been an extremely painful “hurry up & wait” game, and my patience has thinned with each moment.

Between my Neurologist, my Gastroenterologist, my OB-GYN, my Rheumatologist, my Opthamologist, my Primary physician, my Endocrinologist, my Proctologist… one thing is consistent. None of them agree with one another.

Here is a wall ||||. (here is me). Here is a rock O.

In January, I had to undergo some routine tests & procedures; one of these procedures included a spinal tap. To be honest, I don’t think I experienced any pain. maybe a 1/10 & I think this is mostly because of the way science has advances. It was smooth & easy and only took about 1/2 hour – normally they are very short, but my site would not stop bleeding. After they got it to clot, I was back in my room & had to stay a few hours, per hospital instructions. When I left radiology after my spinal tap, I did have a little headache, but it was mostly because of the lights. After waiting, the headache got better and I got to go home. I had to lay flat for about 12 boring hours. Overall, a quick and painless procedure.IMG_0121

Until about 2 days later. I began puking & couldn’t see a damn thing unless I was in the dark. I couldn’t sleep, but when I did, I woke up with a worse migraine. Around 1am, I decided I needed to be seen. I was told by the on-call Neurologist that he will put in orders to get a blood patch done. He quickly explained that it was a simple procedure from taking blood from a vein & injecting that blood into my spine where the spinal tap was done.

When I got to the ER, I was given pain meds, a lot of anti nausea meds & many bags of fluids. Then the anesthesiologist came in & explained the process to me. “Shouldn’t take more than 5-10 minutes, then you have to lay flat again.” Okay, I thought, since the spinal tap was a breeze compared to scary stories you hear!

There was 6 people in the room, including my anesthesiologist & 5 nurses. With this many people in the room, I was a little overwhelmed but they were very kind. He explained the process that he would be giving me an epidural and then injecting blood straight from a source that has not been used by another IV. Since they had a hard time getting access to my veins already, they were smart enough to ask which vein is strongest when I need it. I told them, and they inserted my IV for meds in a different location so they could save the good vein for access to take blood directly from the good vein & hand it over to the Anesthesiologist. Here was the tricky part… Every time the nurse(s) went to grab something, they would contaminate the source, contaminate the vial or contaminate a key piece of equipment that needed to be 100% sterile. 

What should have been a short procedure became painful and verbal. The Anesthesiologist went over the procedure 3-4 times before we started, to make sure everyone understood what to do. Each nurse had a task to complete & everything had to be sterile. One of the nurses kept taking off a pair of gloves and contaminating things, because she forgot/didn’t realize how to de-glove. All the while, two needles are in my back & I’m sitting over the ledge of the bed against one nurse that was responsible for keeping me as still as possible when the needles went in.

It wasn’t easy, but about 45 minutes later, we were done.
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If you aren’t familiar with a blood patch, it is often used in patients that develop “spinal headaches” after spinal taps. Not everyone gets them, but some people get them immediately following their tap. It’s caused when spinal fluid finds a way to leak out, causing the pressure in your spine to change drastically. They took a lot of fluid out, and that’s why you lie flat after the procedure.

About 1/2 later, Doc came back in my room and asked how I was doing. I wasn’t great. Usually, the blood patch immediately “cures” spinal headaches, but there are very slim chances you can develop a spinal headache from getting the blood patch done. I did. They believed in addition to the spinal headache, I developed a migraine mid way through my procedures, especially the epidural, so I was in for a long few days. I spend the next week in & out of the hospital trying to get my vomiting, nausea & pain in control.
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The epidural caused awful pain in my hips the morning after I had the epidural and I cried every step I took. I loathe going to the emergency room, but I had no choice.

Fast forward a few weeks & enter Botox – the answer to my prayers that I had been waiting for my insurance to approve since June. I thought this was my end-all answer to finding relief. I was given a piece of paper regarding the shots at one of my many Neuro appts, but after we were done with my first set, he realized after looking through me chart… that hey! this is my first one! Ugh.

The next day, I woke up in unreal pain in my neck. Though the injections themselves were a bit painful, the unreal pain in my neck lasted for 2 weeks. It wasn’t fun.

When I went back to the doctor to find out my spinal tap results, I found very little answers. I haven’t had my follow up MRI yet, but just before I went back to the procedure room, I had a CT scan, and from what I was told, that appeared normal! That meant no meningitis, no blood infections that they were able to see. (more to come in blog 3.. just privacy & things that aren’t confirmed.)

During my follow up, I was sweating. I had a headache at the time, so it was hard to focus. I asked him to please walk me through my scans, since they hadn’t been discussed with me in at least a month. He explained that it takes so long to see things & grow things out in the lab, I may not have any answers any time soon. But I was so relieved it wasn’t anything systemic, like meningitis or something else. When I asked him straight forward if this means that I don’t have any type of Neurologic disorder, he was quick to say, “I don’t know. These things take a lot of time; in the lab, in testing & especially letting them grow out.” Gee, that’s reassuring.

Then came side effects of Botox.

The migraines I’ve had since I’ve had botox have been the worst yet. Almost immediately after my injections, I was unable to see small things in front of me. Words on a computer, the newspaper, a book. I even worked on coloring books to see if that would help train my eyes to focus a little bit better. I called my Neuro & panicked. “Go see an eye doctor. This is not Botox related.” I disagreed and was very stubborn about it. I know my body better than anyone else. My Neurologist disagreed with me when I told him that I believed I was having a side effect from my injections. I could not see words, I could not focus on anything in front of me & I was terrified. When I went to the Ophthalmologist, I had very blurry vision that day & had no idea how that would affect my tests. They took a lot of different pictures, and did tests that were very hard to focus on/read. They wanted to make sure that there was no inflammation in the back of my eyes, so they dilated them over 3 times, making me completely freaked out. I waited about 15-20 minutes alone in my room before I got very panicked. Up until then, it was only my close-up vision that was affected. When my eyes were dilated, it looked like the entire world was what I had been seeing IMG_0118when trying to read text. I became very panicky and started to cry. I was having a panic attack at the eye doctor’s office.

My vision is still an issue. I am wearing readers in order to see objects close up. I wear them 24 hours & if I don’t have them, I’m in a panic.

Then came more hip pain, the foggy disorientation & side effects of new RXs. some were scary. I’m finally in the last 1/4 of bumping my med for tremors up. The end is near.. but the pain & tremors have also increased. Also, I’ve lost bladder control 2 times in the past 2 weeks – I mean, 30 & flirty, right? More like almost 30 & I should be in a Depends commercial.

My hips have had more episodes & each one gets worse. My neurologist has a lot to try & fit in my appt on Monday. While most of my results (lab grown) have not finalized, I’m trying to breathe & think I’ve done pretty damn good. I have supportive people around me. Andimg_1373 after my last fall, I gave my neighbor a key to my house if she hears something or has a bad feeling… it’s made me laugh because one day I was hanging a picture & was hammering into her side of the wall & she snuck in & I laughed so hard. I’m so thankful for her to be willing to help with things when things go wrong. I’m blessed that her background is similar to mine.

And just when you have waited hours, days, that turn into months & years.. you hear what had feared all this time. & in that moment, I wished I could go back in hours, days, months & years.
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Thrush, kidney infections, pneumonia, pleurisy? Leave & stay away.

An answer..? More elaborate than you’ve ever imagined.

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