Pincushion day

This morning I had my lumbar MRI. I haven't heard otherwise so I'm guessing the x-rays ruled out tumor etc. since I got the call to come in for an MRI. They ordered it without contrast but once the people at the imaging center saw how many spinal surgeries I've had, they showed the doc in charge and he did an override. So, contrast it was.

We headed over to my clinical trial check-up. I didn't realize visit 4 was a labs day. So, there went some blood. The lady didn't do as nice a job as the MRI girl, constantly shifting the needle around, wiggling it, pushing and pulling, trying to get me to bleed. Anyone who knows me knows I bleed like a stuck pig and my draws are notoriously easy...if you know what you're doing.

My chair is going to take longer than expected; it has an expected ship date of July 2.

I hate being stuck in this situation. I need all my brain stuff replaced, need my right subclavian artery fixed, and God only knows what I've messed up in my lumbar where they did the L2-3-4-5 laminectomies, tumor removal, and filum terminale release (followed by 4 month leak).

And of course I was denied a Medigap supplement by the only company that offers one here. Screwed. We can't pay 20% of all of those surgeries, not again. Not an option. Just doesn't seem right to live in America and not be able to get the care needed to live.

Sick of hospitals

Thursday I came home after 6 days in the hospital. My seizures were occurring 3-4 an hour and becoming increasingly violent. After DH being sure I was not breathing, he took me to the hospital. Seizures in the ER confirmed he was right; with each one, the monitor alarms went off. My 02 sats dropped to the 70's and instead of my heart rate skyrocketing, it plummeted. And long story short, I was admitted for 6 days.

I came home on another AED (seizure med). DH thinks they're helping a bit. I'm still seizing but not nearly as often.

I have a clinical trial check-up Tuesday morning and pain man appointment Friday afternoon. My mom is here from out of state so thankfully she can drive. I am anxious to tell Pain Man how his staff refused to give him messages about my situation not once but three times.

My pain control is not doing much at all. I dread getting up, sitting down, getting in and out of bed, whatever.

I don't know what to do any more. I am exhausted, and tired of relentless intractable
pain.

Here's a pic of me a few days ago in-patient, waiting for yet more imaging.

Mother's Day camera man

The camera man from the local NBC station came over this evening and filmed with us for about an hour. I think it went fine, but I had frequent trouble with my lips and tongue all sticking in place, not allowing me to get things out right. Ah, the pleasures of Zanaflex and its side effects!

My 6 year old went back to the pediatrician after school. He went a month ago after spending a week with chest congestion and a nasty cough. He spent 2 weeks on Amoxicillin and ended up worse than ever, followed by 2 weeks on Ceolin. He improved a touch but clearly still had a problem. He went to the doctor after school today and had chest and head x-rays. He is going to take 3 days of the steroid prednisone, sudafed, and ProAir inhaler with microchamber/spacer. He swallowed pills for the first time tonight!

Yesterday I had my first clinical trial visit. It took 2 1/2 hours, well over what they said it would. They had to find a proper approved document to put all of my surgical history on since the provided papers had only room for 2. Heck my 5 year old had 2 surgeries by age 3 and this is for adults! Anyway after paperwork, an EKG, urinalysis, bloodwork, and a physical, I was off to start my first trial. I actually don't get the meds for 3 more weeks, after I prove to them (via answering the nightly questions the PDA system they provided me with that transits answers immediately to their office) that I can be trusted to complete their question system at least 70% of the time.If I can't, I'm out. So I'd better do it because we need the money something fierce.

Our home phone and cable were turned off yesterday. Kind of stinks but there are worse things in life.