MS?!

Well, this isn't the blog I expected to post, but here it is nonetheless.

It looks as though I have MS. They found lesions on my thoracic spine. It may be nothing, BUT they're all on the left side (which would explain my right-sided problems), and it makes sense with my other symptoms. Perhaps the Lyme just exacerbated it. I don't know.

I can't even begin to describe where my head is at. So many people and doctors to call; things to arrange; my life to figure out. It's all very surreal.

Regardless, I am a fighter. I'll fight this to the bitter end, just like I've fought everything else in my life. There is a greater purpose to this, of that I am sure.

I'll be MIA for a while...

To the few of you that follow this blog and don't already know, I'm leaving for LA today. I'm going in for extensive testing, treatment, and possible surgery. I'll do my best to keep everyone up-dated, but since I won't have internet access, I don't want to make any promises that I can't keep.

Thank you all for being so kind & caring during all of this.

I pray that you all have a beautiful, happy, healthy, and blessed new year!!! :)

The Life of a Lymie...

Thursday, December 11, 2008

If you saw me walk without my cane, you’d swear I’m drunk. I stumble, trip; my weight will randomly shift from underneath me; I mis-step; I fall. I’m totally sober, I’m just getting weaker.

I had some minor seizures the other morning. I had 3 or 4 uncontrolled head movements yesterday. My back pain is getting worse. I have almost no range of motion in my neck or back. I’m getting worse. I’m freaking getting worse.

And yet, I can’t get any results, answers, or information. None. Why? Because they don’t have the MS blood results yet. They won’t tell me if they see Lyme in my spinal fluid. Or Babesia, or anything else. They won’t explain the MRI results. Nothing. Not until they get those damn MS results back.

Why?! My brain CT’s and MRI’s were all clear: no plaque or lesions on my brain. So, why does everything seem so dependent on this bloodwork? Did they misinterpret my CT’s and MRI’s? I feel like something is being hidden from me. I think they found something, but don’t want to break the news until they have everything, or need this blood to confirm, or something. But, dammit, it’s been 2 weeks! I don’t have time to fuck around – especially if I need serious treatments or surgery! Apparently, my pain, my condition, my needs don’t mean shit. My life is now based on other peoples’ schedules.

I couldn’t sleep last night. It was my first night without Tylenol PM. I’m trying to wean my body off it, but I am failing.

It doesn’t help that I have to do everything for the insurance company all over again! Every time I make contact, it takes them at least 10 days to get back to me. At that time, they’ll reveal VERY important information that they conveniently forgot to tell me last time I submitted my paperwork. I wrote to the president of the brokerage a week before the MRI, spinal tap & blood patch. I gave her my new address, wanted a status up-date, explained that I was having all this done & so would be in recovery for a while, gave her all the doctors’ and hospitals’ info, etc. I never heard a damn word. Amazingly enough, today she calls me. What did she say? She told me I have start over. I have to COMPLETELY re-do all my submissions & have all of my doctors RESEND their paperwork for the umpteenth time. Why couldn’t she do it while I’ve been on bed rest for the past 2 weeks? Oh, because that violates HIPAA. And she couldn’t have written back or called me to tell me that BEFORE? No, let’s have me wait yet ANOTHER 3 weeks before I find THAT out & learn that everything I have done is null and void. These people are getting paid to do what again?!

Damn. I’m tired. I’m frustrated. I’m very painful. I’m confused. I’m stressed. I am sick of the bullshit that surrounds Lyme disease. This is beyond ridiculous.

My REQUIRED Reading List ;)

Besides my own books, of course ;)

Seriously, you MUST read anything & everything by Chelle Cordero. Why? Because I said so! Because her books sweep you in right away. There is so much depth to her characters. Her plots are full of twists and intrigue. And they're just plain good!

-Bartlett's Rule
-Forgotten
-Within the Law
-Courage of the Heart

Go read them, y'all!!! :)

Excerpts from my Lyme book about the tap, patch & current status

Sunday, November 30, 2008

I'm laying in bed, and have been since last night.

The spinal tap on Friday went as well as one could go, I guess.

First, they took spinal x-rays. Not in the usual way, though. I was laying on my stomach & they took the x-rays from above me. They shot 2 films.

Then they "prepped" me. They tucked sterile drapes in, on, and under me. They scrubbed my back with Betadyne. Then the real fun began.

They injected my spine with Lidocaine. It burned and stung. Just when I thought I was ok & able to handle it, they went deeper and injected more. I tried not to grunt, and tightly gripped the table.

As they advanced the needle from which they would actually draw the fluid, I found that that pain compared to muscle spasms. Since I get muscle spasms in my back on a frequent basis, that actually wasn't too bad.

They slanted the table in increments to have gravity help them obtain the samples since it takes a while to get spinal fluid. By the end, I was almost completely vertical!

After what seemed to be an infinite amount of time, they were finally done. They slowly lowered the table, cleaned me up and put a band-aid on my "ouchie."

Then they drew a blood sample as well. They're testing me for MS again. All of my brain CT's and MRI's show no plaque or lesions on my brain, but I guess it needed to be done.

Slowly, I rolled onto my side to start to get up after it was all over. Instantly, I experienced the "spinal headache." That term does it no justice. Let me just say this: I've had migraines since childhood. Debilitating, nauseating migraines. This made them seem like a walk in the park.

The headache came & went Friday night, but it was tolerable.

Saturday morning, though, was another story. The pain woke me up. Even laying down, the pain continually increased until I could not take it any more. By 10:30 am, I was on my way to the ER.

They placed me in a room about 30-45 minutes after I arrived. Not bad for this particular hospital.

I eventually got an IV & they ran 2 bags of fluid into the line. One was just regular saline. One was saline with caffeine.

The caffeine drip did help to take some of the edge off.

At around 4, an anesthesiologist arrived. It was time for me to get a "blood patch."

What they did was almost like an epidural. It was much stronger than the lidocaine. It burned and caused tremendous pain in both my legs. Then they drew 20 cc's of my own blood, then they "transfused" that blood back into my spine to form a clot over the hole from the tap. The hole from the tap caused me to leak spinal fluid, which caused the unbelievable head pain. This second procedure was like "fix-a-flat" for my spine!

About 60-90 minutes later, a new anesthesiologist came to check on me. He made me sit up in the hospital bed. The headache was significantly less than what it had been before. By 6:30 pm, I was on my way home.

No headache today (thank heaven!). My back is very sore & my legs still hurt to some degree, but I feel so much better. It was well worth it. I'm on strict bed rest for the rest of the day & I have to be extremely careful for the next 3-5 days, but I'll be ok. Now all I have to do is wait for answers…

Wednesday, December 03, 2008

Still no headache. That blood patch pretty much instantly cured me! It's been an amazing relief. My back is still very sore. I'm taking Tylenol 2 – 3 times per day. My mobility is extremely limited, and I am only comfortable lying in certain positions.

I'm still waiting on my results. I pray they come today. I desperately need answers!

I Might be MIA for a While...

Hey all. As many of you know, I have my spinal tap later today. I'm supposed to be in bed for the rest of the afternoon today & all of tomorrow. If I can, I'll try to go on-line to at least up-date you, but I can't make any promises.

Additionally, we're moving Sunday (talk about timing!!). Due to my limited mobility (and ability to hook up my comp), as well as just the usual moving transition, it may be a few days before I'm back on-line. Please understand that I am not ignoring anyone, and that we are working hard to getting back to running at 100% again.

Please be patient with me for the next few days or so. You're all in my thoughts & prayers. I'll be in touch when I can.

Much love & many blessings to you all!

Medical Up-date

I had my MRI Wednesday afternoon, and the Spinal Tap will be on Friday.

I have contacted a lawyer to begin the process of getting social security disability (it’s an absolute must at this point), as well as a possible medical mal-practice case against the original infectious disease doc.

I'm not worried about the actual procedure, but I pray that my spinal MRI will be enough of a diagnostic for disability. I pray that the Lyme (and possibly any other tick-borne diseases) show up in the tap to confirm what we already know to be true.

The MRI went well. We could get the results as early as Monday (they said figure sometime between Monday & Wednesday). All I can do is pray that we can use my screwed up spine as a reason for disability.

As for the tap...All I can do is pray for strength, endurance, and REALLY good drugs ;)