So little time to get ready!

Good news. My mom is paying for me to go on vacation this coming week. I will be taking the Amtrak train to Seattle, then meet up with them, and then we are going on an Alaskan cruise for 7 days. Then I am flying back to California with them, staying a few days, and then taking the train again from San Francisco, home to Michigan. They have great train rates for people with disabilities, and they have lots of services to help me, i.e. special car, outlets for my sleep apnea machine, people to assist me in transferring in Chicago, etc. It's about half the cost of flying there, and so much less hassle. Plus every flight was booked to Seattle...I didn't want to be on overcrowded flights and have terrible experiences like I had last Christmas vacation.

My mom is doing this, because we all have had a very hard year, and we also need to make some future decisions about our family... my mom is 72, and doesn't want to live alone and far away from either of us, and it's a decision we need to consider. Plus my brother can't get a teaching job in California and may need to move to find something. All of this needs to be figured out.

I have so much to do!!!! But at least it is for something good. Take care, Laurie

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Back early

I had a great trip up to Traverse City, but I had car trouble both ways. I had to drive all the way home early today, because of the trouble. The problem is that my "small, slow" leak in my radiator, turned into a major flooding event along the way. A mechanic in Honor, MI, took a look at it and gave me advice on how to drive it home. Randy's Auto Service will replace the radiator on Tuesday or Wednesday...until then, I shouldn't drive much!

But I had a good time. I hit some great deals. I went to the goodwill outlet store in Grand Rapids, and got some needed stuff, i.e. new frying pans, stationary, a shredder for $1!!

Then I went up to Motel 6 in Traverse City. I had left a part of my sleep apnea machine at home!!!!!! I rigged it up with packing tape, plastic, etc...it was quite a sight. Luckily, the home medical company there had a replacement.

It was great is the moisture in the air there is so thick, I could breathe so much easier for both days I was there. The job interview was good...I think there are about 8 of us, and I have a good chance. They will let me know within two weeks.

I went around downtown Traverse City...it's beautiful...definitely money there...nothing is run down at all. Lots of things to do, great services, etc. I definitely want to move there!!!

Then I went to the best museum I think I have ever been to-- the "Music House" there. It had everything from jukeboxes to player pianos, church pipe organs, to these huge dance hall "orchestra" instruments with 800 pipes and other instruments in them. I stayed there for 3 hours...they had to kick me out because they were closing!!

Then I went to Honor, Michigan. The motel was funky, 50's style. The owners were great and helpful. The mechanic was across the street, so I arranged for him to look at my car in the morning. From there I went to the Cherry Bowl Drive-in theater. If you ever go up there, go there!!! It's the last continuously run drive-in in Michigan since the 1950s, and they haven't changed much. It's like being in the 50's. I had an Elvis sandwich there for dinner--peanut butter and bananas. Great fun, and it's so cool to be in a drive-in with 300 or so cars like the olden days (I remember from my childhood).

Then I drove to a casino, and enjoyed myself for 2 hours and $20 worth. Then I drove to Holland, and stopped at the Salvation Army Store. They were having 49 cent Saturday night madness on two colors of tags on the clothing. I think I bought every plus size item they had in those two colors from sizes 20-26. I think I bought about 30 items, for $15. Woo Hoo!

Then I drove back to Niles non-stop. Back to reality.. But I got great perspective on my life and how I don't deserve what has happened to me in the last few years, and feel ready to move forward, and hopefully towards a better life. I was surprised how ill I looked on Friday morning for the interview.. I wore lots of make up to brighten me up. These last few months have been rough!!!

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More "action" at my apartment building...

More "excitement" from my apartment building. Last month a gunshot through my apartment, thought to be connected to another apartment. An hour ago, the woman in that apartment, jumped from the 3rd floor to the cement. The police were at their apartment earlier today for a domestic disturbance. Her boyfriend seems high and denying everything. My part is I called the landlady, who was here in 5 minutes. too much.. Glad I am going on vacation tomorrow!

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A test back...

I received a fax back today with my results from the oximetry tests this weekend--fast! Anyway, it's not great news, and proves something is going on even when I have my oxygen on, and my sleep apnea machine (cpap). On Friday night, I didn't desaturate at all, and was able to keep my pulse and oxygen up. But Saturday night was quite different. I had a sore throat and fever when I went to bed. The test looks like I had some kind of event...a long apnea???, that sent my blood oxygen down from 96% to 79% within 3 minutes (way fast). Then, pulse went up to 250...which is severe tachycardia (fast pulse/heart rate). Then, for an hour, I seem to recover and have no problems (huh?) and then for the next 5 hours I go in and out of hypoxia with my blood oxygen levels mostly between 70-80% (hypoxia is below 88%). And then there are hours were my pulse is low 32-48 beats. Obviously, this is not good--it might be showing what happens to me when I have any illness that affects my breathing and sleep apnea. I am not sure what it all means, so hopefully my specialists can figure it out. I sent the test to the cardiologist. The sleep apnea doctor got it today. Hopefully, I'll know more tomorrow.

It's pretty scary to know this happens when I sleep, but in some ways, I've known I go up and down like this for months, so it's not a big shock. Hopefully, tomorrow, the specialists will insist that I get an alarm that sounds when my blood oxygen goes too low. It's been held up by my primary care doctor being in "classes" now for 2 weeks and she won't be back until next Tuesday. I got on their case today, but still no call back. This is after last week, they delayed these tests for 7 days by not calling me or setting them up after my sleep apnea doctor called them....aaaghhh. Medical care here is not "top of the line"....

But there is also good news. I have a job interview to be a school occupational therapist. It is in Traverse City, Michigan, which is about 4 1/2 hours due north of where I am living now. It's full time and great pay and benefits. It would get me out of poverty. But I am having mixed feelings about it, as when I applied a month ago, I was doing so much better. I guess I'll just have to hope that my health improves enough to work full-time by September. My interview is in Traverse City on the 22nd. It's a wonderful little resort town on Lake Michigan--very cold--frozen tundra in the winter. The intermediate school district I would work for covers quite a big geographical area though; four counties I think, because it is so rural.

So that's the news in my life this week. Oh, I am still fighting Medicaid. Nobody has called me back in weeks, despite my many attempts. But I am trying to concentrate on getting the medical care, not worrying about Medicaid...eventually, I will be found to be correct as far as Medicaid laws go. Lovely Michigan government though we have.

Take good care all... Laurie

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Monitoring all week...

Life's been better healthwise. Until today, I was feeling better and better, but now I have a sore throat...aaghhh. I had two different types of overnight monitoring this week. The first is the Holter Monitor (continous electrocardiogram) which I had on for 24 hours from Tuesday to Wednesday...the electrodes were so itchy!!! And this weekend, I have a overnight pulse oximetry for 3 nights, which keeps track of my oxygen levels. Friday night the stats looked good when I would wake up, but last night they would be in the low 80's a couple of times. This is not that bad, but you have to consider I was on oxygen and my sleep apnea machine. Hopefully, though, this will give the doctors some ideas of what is going on.

The cardiologist's theory is that my sleep apnea goes bad episodically, and I start retaining too much carbon dioxide. This through some respiratory processes, becomes respiratory acidosis, which is a serious condition. Unfortunately, since my ER visit was so bad, they can't confirm it for sure, as they didn't take my blood gases which would have confirmed it there. Anyway, it's basically the same as I have carbon dioxide poisoning occassionally. I think it is a good theory, and hopefully they can confirm it with some tests. The treatment is to have me have an alarm on an oximeter when my blood oxygen goes too low, and I would wake up, turn up the oxygen or wake up for awhile to deal with it. It is manageable and preventable.

Bad news in our town this week. The largest employer, Tyler Refrigeration, is closing and laying off 500 people. There are no jobs in this town for them to go to anymore. They can't go to South Bend or Elkhart, Indiana nearby--they have the 2nd highest unemployment rate in the U.S. already. I think we are going to look like a ghost town in a few months when people try to leave to find jobs. Sad, sad, sad..

The Michigan government has just plained pissed me off this week. They stole $1 billion dollars from Medicaid from the federal stimulus to balance the state's budget. They weren't honest about the money...the state budget director kept referring to it as "flexible stimulus monies"...yeah, right. And even after stealing the $1 billion from Medicaid, then they made cuts to existing Medicaid services. It is terrible news for people like me who are already in a terrible situation, where those people on SSDI--people who have worked many years and qualified as social security disabled are forced down to living on $335 a month if we need the medical care. People who don't work on Social Security Disability (SSI), are allowed to keep their full benefit ($700) and get full benefits with no paperwork. So we in the SSDI category are penalized for having worked in our lives. I have been actively advocating for these reform bills for Medicaid to change this unjust system. But with the MI Government's actions this week, the bills aren't likely to pass, because there is no money left. It's criminal to balance the budget on the disabled, children, and elderly who receive most of the Medicaid in Michigan. But believe it or not, I can't get anyone to listen to me why this is so wrong...

Well, tired... I probably won't sub teach tomorrow because of the sore throat, but I still should go to bed...

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Doing better...

I ended up getting more care--On Thursday. I wrote (another!) complaint letter to the hospital about my ER treatment. It was not appropriate for hypoxia. Anyways, lots of blood tests, a chest x-ray, blood gases, etc. on Thursday, so if there is anything wrong with those, I should know tomorrow. I have been referred to my cardiologist to see if he thinks it is cardiac.

Not much sub teaching work. No word from the job, but they have been checking my references. I am doing lots of writing and emailing to Medicaid--such stupidity going on-- and advocacy for MI Medicaid. I've been asked to join lots of projects/advocacy groups in the last week, but unfortunately, I've not been physically up to the challenge.

I had a scare on Friday. The drug-dealing neighbors were yelling at a white car (same color as the gun shot) and wouldn't leave. I called the police and hid in my room. It seems to be handled. I don't know if they got the white car's license plate or anything. I sure hope so. It could have been coincidence though.

Hoping for a better week!

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