Just Walking is Hard to Do

While the vast majority of my spine surgeries have been on the c-spine (cervical), I did have surgery for Tethered Cord Syndrome (my form of TCS is also referred to as tight filum terminale) that was a bit difficult to fix thanks to a benign tumor getting in the way of everything.

For the last week I have been having excruciating stabbing pain in my lumbar region, and it has worsened daily. It has become severe enough that my DH took the last two days off work without telling me beforehand because he could see how badly things were. These last two days have been extreme in terms of pain and limited mobility. If I try to move my upper body just a couple of inches in any direction, the screaming pain makes itself known. Leg movement does the same, so walking must be done with great caution and only with small and the slowest of baby steps.

Yesterday I called the spine doctor I see here in Tucson for an appointment (I see him when I want an opinion on what my neurosurgeons in NY say) but he cannot be seen until Tuesday. I called back today and there is just no way around the wait. In the back of my mind I am afraid of there being damage to the area that was worked on for the TCS. Will I do permanent harm if I wait until Tuesday? I hate going to the ER but in the back of my hole-y head (must maintain humor, & thx to my permanent craniectomy I DO have a hole in my head) I can't help but think this time it might be warranted to make sure the EDS isn't making the spine deteriorate any further.

Ehlers-Danlos sucks.

Brain Injuries in Monsoons, & How to Anger a Plane w/o Trying

The monsoon is alive & well in Tucson. The changes in the weather always do a number on my head, especially this time of year with the crazy summer monsoon storms in southern Arizona. It started after the first craniectomy, and only got worse after they had to expand it a year later. Most people with craniectomies get the piece of skull put back on at some point down the road, but having this disorder means never reuniting with the missing piece, my squishy brain missing its cover. It's pretty unnerving & admittedly a bit frightening when I'm in the car with thoughts of accidents enter my mind. I imagine my brain bulging through that hole in a wreck. That would surely feel tons better than how I feel right now though; I am 99% positive I have a small CSF leak, something I experienced with the brain surgeries, the spine surgeries, and more lumbar punctures (a.k.a. spinal taps) than I care to recall, so I am all too familiar. One of the areas that has been operated on has been giving a lot of trouble the last 3 weeks or so, and there was a sudden change a couple days ago and since that moment I've had the CSF leak-like issues. It's awful but I always remind myself of something I wrote down and stuck on the fridge: it came to pass, it did not come to stay. I'm still here after almost two dozen surgeries, and there must be a reason why. I'll keep reminding myself of that while the monsoon weather wreaks havoc in my swiss cheese brain.

In other news, the day after the kids finished school the three of us flew to Oregon to visit my parents. They moved there a year and a half ago but were about to move again, this time to Germany, and I wanted to see them before they left. Oregon was also one of the few states I had never visited, so I was particularly excited for this trip. The only downside was that my husband could not come because of not having any time off yet at his current job.

My son (DS) had just turned 10 and my daughter (DD) is about 9, so it's getting easier all the time to travel with them. Still, traveling with a brain injury and EDS is a challenge, exhausting and difficult even when I have to fly alone (I have on occasion traveled to New York alone to see my neurosurgeons). Getting through security with the kids is the hardest part though, guiding them through, keeping a watchful eye with the seemingly constant chaos that is the TSA, and getting myself through is difficult, plus playing swap-a-cane. TSA requires the use of their wooden canes since private ones must go through the scanner. Some airports I've been to had TSA security without their canes at every line, causing a wait for the disabled.

We had a smooth flight from Tucson to Denver, my kindred spirited but timid- and afraid of heights- DS grew more confident about gazing out the window from time to time. We boarded the flight from Denver to Portland, and moments after take-off I knew something was not right. I was doubled over with constant abdominal pain and nausea. We were in the very last row of the plane, the row nobody ever wants (this famous hysterical letter from a plane passenger to an airline is awesome). I writhed in my seat, trying to not moan or cry for the sake of my children, focusing on my breathing exercises and wishing the fasten seat belt sign would hurry up and turn off so I could get into the bathroom. I spent probably 2/3rds of the flight in the bathroom, vomiting and feeling the need to urinate but as anyone with kidney stone experience knows that instead of peeing, you just sit and have spasms. I spent the flight going from my seat to the bathroom, squeezing out in labor-like contractions a total of 5-6 drops of urine the entire 2 1/2 hours.

The attendants were kind, swapping out the barf bags regularly. They remembered seeing a doctor's name on the passenger list so they went to talk to the person. Sure enough there was a young female doctor on the flight and the flight attendants had her come check on me. By that point I was so severely dehydrated that I couldn't keep any drinks down and had a hard time speaking because my gums, tongue, and lips were so dry and they all just stuck together, making my speech rather garbled and hard to understand. I told her how I'd had a CT scan the day prior to see if I had stones again (I had kidney surgery in September after 4 days in the hospital with marble-sized stones blocking anything coming or going out of my kidney, getting it swollen and infected). The doctor felt I did likely have stones again, and the altitude was bringing them down quickly. She recommended I go straight to the hospital after landing, as I couldn't keep anything down due to the dehydration, and the possibility of another kidney infection. And as always with Ehlers-Danlos and severe abdominal pain, aortic dissection has to be ruled out right away. The flight attendants asked if I would agree to them calling the cockpit and updating the pilot of the situation so that he could request an ambulance to meet us on the ground at the gate, and I agreed. At that point, I was in such horrible pain I could not even imagine not going in for help, or delaying it by doing something like picking up our one bag at the baggage claim and then having my parents drive me to the ER. I knew I needed to go straight there from the plane.

After what felt to be one of the longest flight of my life, we finally landed. As we taxied toward the terminal, my children were excited as they cried out, "I see the ambulance! It's right there!" I groaned but was relieved help was on the way. The passengers were unbuckling seat belts and shifting around when the flight attendants came on the intercom, asking everyone to please stay in their seats because paramedics needed to come on board to remove a passenger with a medical emergency. Sitting in the last row, I could see everyone looking around as the paramedics came on, pushing the airplane aisle wheelchair (funky narrow thing). They got me loaded up, took my bags, helped my kids, and went out into the gate seating area.

They had me sit in a seat there, where there were a bunch of other paramedics, airport security, and Portland police. They called my parents who were in the baggage claim, and told them to pick up a security pass waiting for them so they could come up and get the kids. My poor mom, at security TSA wanted to go through my Mom's purse, do a pat-down, go talk to her, etc. They said it was luck of the draw. She was ticked and told them she wasn't flying, look at her pass, her kid was on a gurney right down the way! Sheesh. Anyway, my blood pressure was low, among other things, and they set up IVs right there at the gate.

The care at the hospital was awesome. I was seen by 3 doctors in my room in under 5 minutes. They did my tests themselves right on down to giving me nasty potassium drinks at discharge because my levels were still low from vomiting for so long. They came for updates on me constantly. They were fantastic with their knowledge of Ehlers-Danlos, thus I had multiple levels of ultrasounds to make sure wasn't having aortic aneurysm which kills people with Ehlers-Danlos. They also diagnosed ovarian torsion, something I wasn't expecting. They did a great job tracking down someone in Tucson who could tell them the results of the CT scan I had the day before; my flight was on a Saturday, so the imaging center was closed. They were able to find out I did indeed have multiple stones. There is no reason they could not have told me while I was there. It was right in front of them, while I was there, in the machine. Instead of marble-sized ones though, this time it was the size of two marbles put together.

I did learn a couple things from this experience. When 300 people have to wait to get off a plane, they aren't happy people. I feel like I ticked them off in one fell swoop without even trying. And flying at 31,000 feet writhing in pain,vomiting uncontrollably

I did learn a couple things from this experience. When 300 people have to wait to get off a plane, they aren't happy people. I feel like I ticked them off in one fell swoop without even trying. And flying at 31,000 feet writhing in pain, vomiting uncontrollably, is not only awful but it made me feel incredibly trapped and frightened. While the kidney stones were certainly awful, had it been an aortic dissection, it would have been too late. I'd say I was being watched out for, with all of the people that were there to help me along the way.

What a snot!

I was keeping an eye out the front window today for my neighbor to pull up with my children from school. Suddenly a little beagle comes wandering down the sidewalk across the street, no human in sight.

I can clearly see its collar and tags. Going outside my front door, I call it and it comes across the street right to me, licks my arms and hands, a happy critter.

Within moments it starts to lightning and hail.

2 of my dogs flip out and are NOT keen on this beagle so I got it (not easily) into Shelby's crate and shut the bedroom door with the help of my kids.

The number on the tags is disconnected.

I post at Freecycle begging if anyone can even please drive it to the shelter or something, that I'm a disabled mom and it's illegal for me to drive.

I call no less than 8 places--PACC, Humane Society, breed rescues, animal control, you name it.

Suddenly I receive two NASTY emails chewing me out, telling me everything I SHOULD have done in their eyes (that I already DID), including DRIVE IT TO THE SHELTER and continuing to chew me out.

They obviously could read since they emailed me but how nasty! Cookie (yes it's real name) would have been run right over in that blinding storm had I not grabbed it. Bunch of snots! No good deed goes unpunished, I tell you.

And yes I finally found a rescue group with someone available that is on the way over.