Friday, August 28, 2015

The End of August

This has been such a long month and so stressful. The results came back from the radioactive scrambled egg test and the solid food portion was abnormal. My doctor says he thinks I have gastroparesis, which means the stomach doesn't function normally. Basically it's paralysis of the muscles of the stomach. I heard this from his nurse over the phone with the results so there wasn't much information. I'm still waiting for the test in September to see if there is an obstruction causing this.

Meanwhile, my symptoms with the pain, cramping and not eating much are getting worse, but I can't take time off work to go see him again or I will lose my job. I really thought I was going to be terminated last week, but I got another stern warning. I don't think it's a question of "IF" I'm going to be a fired, but more of a question of "WHEN."

I'm starting to miss the days when I was just worried about my migraines. They are still going strong, especially now with my allergies. I haven't used my cpap machine in weeks cause of all the congestion. And my ADA claim was denied, but there wasn't enough evidence for an accommodation.


migraineur said...

Yet more hugs. The job thing sucks. There's no better word for it. If it helps, I was battling that same when, not if issue at the last job. In some ways it was a relief when they fired me, as it took away the pressure of how am I going to manage to keep it together enough to keep the job.

To be utterly rude, what accommodations were you seeking? Did your doctor help you with the paperwork? And did they get to the correct person at your work? I was having trouble with my paperwork at the current job, and HR closed the claim without acting on anything I requested, not even denying it, just closing the case. I ended up hanging up on the rep at the outsourced firm that handles the HR claims and I wrote a polite but very firm and frustrated email to the head of HR. I explained why I was jumping straight to them, about the closed ada request for reasonable accommodations (all I needed was to move desks, so I wasn't sitting under the fluorescents). Then, I dropped the heavy ammo and asked if I should consult with a lawyer, then have them assist me with my request. The HR person rubber stamped that thing within an hour.

Basically, I'm trying to figure out what you asked for, and why it was declined. Then I can try to help you get what you're needing.

So Neuro was this morning. I'm green lighted, so once I've had my insurance ok things and I have a little PT to strengthen my neck, I'm getting botox. I should have guessed that the doc would want me in pt, since this paralyses some muscles, they want me to have the other muscles in shape to handle things. Crossing my fingers that my insurance will not sit on the request too long. My first pt session is on September 14th, so they're moving right along.

We're also going to try a different preventative, as the amitriptyline could be aggravating my inability to drop my weight. I'm going back on a blood pressure med in the same family as the version that was very helpful at one point. We're also swapping my muscle relaxer. The doc had had good luck with using a med designed to help MS pt's with muscle pain, she noticed that I'm almost in full tetanae in some of my shoulder muscles (spasmed to the point where that can't relax)

Really wish we could have just begun botox, but I know they're trying to get things settled so I won't have any issues, either insurance/financial our physical.

Migraine Chick said...

The accommodation was for future time off for medical procedures, tests...but since the doc didn't have concrete dates yet, they couldn't proceed and I wasn't asking for a physical accommodation in my office environment. I had the botox shots a while back and it did affect the muscles in my neck, but they didn't give me any PT, which I think would have helped a great deal! I hope the new scripts and the botox shots help!

migraineur said...

I had a huge post, and my phone ate it. Sorry, I'll get you an update on the meds after I'm not mad at my phone. So far, the muscle relaxer had been amazing!

Migraine Chick said...

I hate when that happens! My phone has eaten things too! Glad to hear the muscle relaxer is helping.

migraineur said...

OK, so far, I like this new med (baclofen, if you're looking for a different line of possibilities). I'm really really sore, like more fond of the heating pad than the hubby- unless he's rubbing my neck, sore. But I can feel that I'm sore because I'm not in a constant cramp, so I keep hoping it will improve, it's just been on the uphill part of the path, not the downhill yet.

I'm in the middle of a bad stretch at the moment...I picked up some sort of throat is so sore it feels raw. And I've missed 2 more days of work last week, between the throat, the neck, and the going on 8 days migraine; all of which scares me. Boss has been amazing, but I'm worried that I'm pushing things too far, there's no way I could have managed 8 solid hours of talking on a phone. And somewhere in the back of my brain, the hamsters keep throwing the possibility of Meningitis onto the mental panic button, which certainly doesn't help.

Got the first PT session done, they're happy with my range of motion, and flexibility, and so I've got some exercises I'm supposed to do twice each day. I'm trying really hard to do them, but I've not felt up to putting on shoes that tie, or routine household stuff, so.... :p

So, gastroparesis. I've wondered about that myself, especially since I'm now on daily narcotics. I picked a fellow suffers brain, and I've got some of those same symptoms. I can't remember the med, but there's one she said was amazing. However the FDA were their usual jerk selves and pulled it. She mail orders it from Australia in a 3 month supply, says its the cheapest way to find it. Let me know if you need that info, and I'll try to get it out of her when I'm able to take notes.

You're very close to the next scope date, by the timeline your put out earlier, know I'm thinking about you. As always, you've got lots of HUGS from me. Take care of yourself.

Migraine Chick said...

I would love that info about ordering the meds from Australia. I've never done anything like that before. So sorry to hear about the sore throat. It's so hard when we already have chronic pain to deal with. Glad to hear the PT session went well! Hugs!!!