Another day, another doctor

I went to the new neurologist yesterday. He gave me a prescription for Indomethacin suppositories ~shudder~ to be used 3 times a day since I can't take oral NSAID's, and one for Neurontin. The suppositories aren't usual. They are only supplied in one pharmacy in the area and it's 50 miles from here. I called them this morning and they told me if I can get the doc to call the prescription in they will send them to me in the mail. What a great attitude! I like them already. The lady I talked to said it's not worth driving that far for one medication with gas prices the way they are these days. I didn't know pharmacies would still do that. I guess it's not all glitz and technology after all.

He's not sure it's ATN. He said we'll know more after I try these new meds and see how they work or don't work.

I guess in the meantime I can go get the Neurontin and start on that. I can only start one med at a time because of my tendency to have weird reactions to things - that way I know which drug is causing the problem if there is a problem.

He tested me with a cotton ball yesterday against the right side of my face and it left me with a killer headache. It was not pleasant but it did confirm that I have allodynia. I guess that's good because at least we know that component of things.

I just talked to the disability lady and she said they have everything they need...they're just waiting to hear from the people who make the decisions and that I'll hear from them about the same time the lady does. Now it's just a matter of waiting. I hate waiting. It's not my strong suit.

I'm learning, though.

just stuff

I joined an online Yahoo support group for people with TN. It helps me to know others out there are going through the same things I am...loss of social life, intolerance of heat, light, cold, activity, smells, sounds...I felt really isolated for a little while there.

I go see Neurologist #3 on Monday. I'm hoping maybe he will be the one who I can stick with and who won't treat me like a moron. I'm no dummy. I've researched these conditions and I know my body well enough to be aware of what I do and do not tolerate. I know him from the hospital I used to work at so maybe that will help.

The ringing in my ears won't go away. It keeps getting louder and more annoying. Yesterday I had the tingly-scalp headache again. I let hubby drive to his post-op appointment. I would have stayed home but there's no way he'd have made it to the office without getting lost. He's good at going from point A to point B but when it goes in an out-of-the-routine way, forget it. I rode along and then took a nap in the car while he went in to see the doctor.

I need to find a way to make money while I'm sitting here. I'm thinking of online writing classes once my disability kicks in. Maybe I can do some freelancing.

I'm almost done with the mystery quilt top. I need to get on the ball so I can make the new grandbaby a quilt before the shower. I also need to fill out the invitations and stuff this week and get them in the mail.

My head hurts again today. I'm trying to lay off the Vicodin but it's about the only thing that helps other than sleep.

It's time for a nap.

A frustrating week

I've had a hard time already this week. My headaches the last two weeks have been worse than normal for me, and this week my neurologist dropped me like a hot potato after I cancelled some appointments because my head hurt too badly to sit in the van for an hour each way to go to some appointments where I'd see the doc for maybe 15 minutes. I gave as much notice as I could, but obviously dollar signs mean more to him than how I'm feeling so I'm off his list.

I did manage to get an appointment with a neurologist I know who is a bit closer than this guy was, and I'm pretty sure he's not gonna be pushing the intrusive stuff the other one wanted to try and rush me into. He'll start out with the benefit of having all the pertinent tests at hand, barring the spinal tap, of course, which they wouldn't reschedule till I saw the doc that won't see me...but I have a list of meds, and the MRI and MRA and CT results in my bedroom. I also have my latest labs.

It just frustrates the socks off me that doing what I was told to do and taking the meds when I was told to take them led to me getting dumped.

My daughters didn't like that doc, anyhow. They said he was arrogant and had a pushy know-it-all attitude, so maybe this was for the best. And, honestly, I didn't feel comfortable with him trying to pressure me into a rhizotomy and other things when he'd only been treating me for 3 months.

In the meantime the headaches have gotten more intense and frequent and the ringing in my ears is louder. The back of my head hurts more now than anywhere else most days. I'm having nightmares and talking so loudly in my sleep that I'm waking myself up. I don't like this.

Chronic illness sucks.

again and again

Ouch...my head hurts again. It's an occipital headache again today. I've been having more and more of those lately. I'm not sure why.

I'm supposed to go to the doc today, but if this doesn't back off a bit there's no way I'm driving all the way to St. Louis. It's hard enough to get around town when I hurt; if I take my meds, driving is out of the question.

I would give about anything right now for a pain-free day.

rough day

I was awakened this morning with a tingling, peeling-up kind of feeling on my scalp. Now I've had these headaches before, but not so bad they woke me up. It was only 4 o'clock. I'd rather not be awakened like that.

I called the doc's office to have them reschedule the spinal tap and they told me the hospital told them I had to see the doc again before I could reschedule. That's not what they told me. They just told me I had to have the doc do it. I'm not really happy with their lack of honesty with me. I may have to see if I can get this done somewhere else. After all, it's not my fault life got in the way of the procedure. It does that. And I did call and let them know I wasn't coming, so at least I notified them instead of just not showing up.

So anyhow I go see the doc tomorrow at 1050 in the morning. I know he's gonna ask me why I didn't have the tap done yet. Well, I'll be more than happy to tell him. Migraines, my ride has to change plans because her husband has to work, severe URI's, husband with a ruptured appendix...like I did any of that on purpose. I certainly didn't plan on having 4 months solid of daily headaches, either. I wanted to work and make money and life a happily-ever-after life or at least a semblance thereof.

Some days life just frustrates me.

day 122

I'm waiting to hear from the disability people. They said 90 days and it's been 90 days. I'm prepared to get a lawyer if I need to.

My head has been up and down lately. I made myself work through my headaches last week while hubby was in the hospital with a ruptured appendix. I didn't have much of a choice. There were things that needed to be done that he couldn't do, and it's just the two of us, so there we were. I took down the garbage and brought the can back up after the people emptied it. I've been doing my work around the house and yard and most of his lately, and it will stay that way for another 5 weeks or so. He had an open surgery so he has to take it easy as far as lifting and stuff for 6 weeks.

After he got home I had a bad day. I had 3 headaches on Saturday after one very bad one Friday evening. I took Vicodin Friday night and Vicodin and DHE on Saturday. It kicked the headache out for a while, but it came back. I tend to do that - have the worst headaches after the stress passes and I start relaxing. Hopefully now that he's back to work, on light duty, and out of the house, things will settle down and get back to somewhat normal again.

Once again I need to reschedule that darn spinal tap. It's been a battle getting that done. If it's not schedule conflicts with my daughter, who has to give me a ride home, it's sick family or sick me. Hopefully this time we'll get it done and over with. After that I need to reschedule the neurosurgeon appointment and then I can go back to my doc.

It all falls into a routine after a while...