Recap - Part 2

(Email from 15 December 2008)

Hi, again.

Sorry I haven’t given any updates, but there really hasn’t been anything helpful until today. I’ve still been having headaches and dizziness and, as of this morning, nausea. So, here’s the update since the ENT visit last week (was it really just a few days ago?).

Thursday late afternoon/evening
Went to ER as headache pain was beyond bearing. My doctor was hoping they’d admit me and do some more tests in the hospital. The ER doc did not agree with that plan. She did some basic neurological tests, which I apparently passed. Again, all the standard vital signs were in the normal range (of course they were – after all, I take those pills daily for a reason!). She did decide to do a spinal tap to rule out meningitis and stuff. Good thing needles don’t bother me. Anyway, the spinal tap was just fine. Darn it. ER doc sent me home.

Friday
Spent all day waiting for my doctor to return my call to follow up on the ER visit. I spoke with the receptionist at 9:00 a.m. and she said she’d give him the message as soon as he finished with his patient.

Saturday
Oh, boy. Just when I thought I knew what was going on, it got worse. The headache that had been fairly localized (if in varying locations) all of a sudden changed. The pain started just above my eyes (basically the width of my eyes), went across the top of my head, down the back of my head and into my neck. I suddenly couldn’t move my neck (!) without pain. Joy. At Bobby’s
suggestion, I tried a heating pad, and that seemed to help. So I spent most of Saturday in the recliner with the heating pad at my neck. Except for a trip to Aldi with Bobby, since we really didn’t have food left in the house. ;-) That wore me out and I was happy to get back to my recliner and heating pad.

Sunday
Repeat of Saturday, minus the Aldi trip. Decided to try and go to work on Monday, with Bobby’s help.

Monday (today)
Got up, took a shower, put on work clothes (it’s been over a week!) and Bobby took me to work at 6:00 a.m. as I didn’t want to drive in case of dizzy spells/neck pain. No neck pain or dizziness initially. Yay! However, by 7:00 a.m. the pain was building in my head and had returned in my neck. And, for the first time, I had nausea. It just doesn’t get any better than this, does it? I went and talked to Linda (my boss, who had just got in to work) and explained that, no matter how badly I wanted to stay, there was no way I could work due to the pain and lack of concentration (no multi-tasking for me, that’s for sure). Gary (co-worker) drove me home about 8:00 a.m. So much for being able to work.

I left a voicemail message at my doctor’s office which was returned by the nurse fairly quickly. She had never heard anything about my ER visit on Thursday. If the girl who took the message actually passed it on, the nurse had never heard about it (which would be unusual..these nurses know everything). I explained what was going on and got an appointment for 10:30. I then texted Bobby and asked if he could leave work and take me to the apppointment, which he did.

Went to the doctor, who, while filling out paperwork for my FMLA leave (I’m officially off work until at least 31 December…I have no idea how much will be paid), put his nurses to work trying to get me a same-day MRI and/or neurologist appointment. By finagling the system, Kami got me a 12:30 appointment for the head MRI. The doctor also said he’d give me prescriptions for Percocet (to see if it helps the headaches) and Phenergan (for the nausea). Kami rushed us out
to go to the hospital to get the MRI. Said she’d follow up on the prescriptions.

Got to the MRI place and discovered Kami had forgotten to give me back my insurance card which she had borrowed while trying to make appointments! Fortunately (?) my info was in the system due to my very recent ER visit. Kami called while I was checking in and said she had faxed a copy of my card to the hospital, so everything worked out just fine. Had the MRI done and went home.

I had left a message for Kami, letting her know the MRI was complete so they could start trying to get the results. I also said I’d be by later to pick up my insurance card and the prescriptions. I called back an hour later and Kami said they still hadn’t heard from the radiologist. I decided to go get the card & prescriptions, anyway.

So, we go back to the doctor’s office and I went inside to grab the stuff. Bobby waited in the car. Kami spotted me in the waiting area and told me to hang on, the doctor wanted to talk with me. So, I spent more time in the waiting area (Bobby still outside – I thought it would only be a few minutes). Finally, between patients, Dr. Bernhardt called me in and said he had the results! I was so relieved! He went on to say that the MRI did not show any tumor/mass but that there were several 5-6 millimeter “spots” across both sides of my brain.

He explained that there were several possible causes, ranging from vasculitis (inflamed blood vessels) to an entire spectrum of autoimmune diseases (MS, lupus, rheumatoid arthritis, etc.). He had spoken with a neurologist who said he’d see me, but has no open appointments. They’ll be calling at the first cancellation (pray that it’s quickly). Meanwhile, the neurologist told Dr. Bernhardt to order a slew of blood tests (in addition to the ones we’d done over the past few weeks). I had the blood drawn and left. Bobby was still waiting in the car. :-)

We went and dropped off my prescriptions at a very busy Osco. We’ll pick them up in a little while.

I looked up info on vasculitis on the web and learned there are bunches of different types of vasculitis, all varying in severity/treatment/prognosis. I’m just so thrilled to have a direction to go with the testing and stuff that the diagnosis itself is not bothering me (yet). At least now I know possibilities and I know my job is safe (or at least as safe as any right now) thanks to FMLA. I may have no money in the near-term, but Bobby and I will figure it out. [BTW – Christmas won’t have many packages from Lori, except for a few things I had already ordered.]

Please pray that I get to the neurologist quickly. After that, we’ll have a better idea of what we’re up against. Mom will go to the neurologist with me…she can answer medical questions about autoimmune diseases in our family, which may help the doctor. Also, say a prayer of thanks that there was no tumor/mass - - - that’s what we had been dreading.