Sunday, October 25, 2009

new attitude

Hi everyone... new look, new attitude. It's been a hard month, but I am coming out of a funk. I am newly diagnosed with supra-ventricular tachycardia... a heart arrhythmia. It looks like I am moving home to California in mid-December for financial reasons and I miss my family and friends. There were some job offers this past month, but problems with licensing. There is still a possibility of a job in Grand Rapids. But mostly, I am ready to go back. I am subbing some, and luckily have not caught anything yet! Swine flu is rampant around here. Take care, Laurie

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Monday, September 21, 2009

Slowly improving...

Just a quick note that things are going better. I was lucky and was able to go to the University of Michigan this past week and have a head honcho doctor prescribe a new treatment plan, plus have a sleep study. I wasn't supposed to get any of this treatment until November, so I am feeling good that I'm not lost in the crowd.

My new Medicaid hearing is this week too. No job interviews lately. No news from my family to report about. I'm slowly becoming more positive and hopeful about my future.. Laurie

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Saturday, September 5, 2009

still here...

It's been an eventful couple of weeks, and I am doing okay. I have been emotional about all the medical issues and all this hate I see spewed out in my world. Job-wise, I was "hired" on Friday last week in Columbus, Ohio. On Monday, they called me. The woman I was replacing, who was pregnant and giving up the job to dedicate herself to the baby, miscarried. So she wants to come back to work. While I am disappointed, this is something that I can understand. I feel so sorry for the woman who miscarried.

Other than that, life has been interesting. A little jinxed. I waited for 5 months for my "expedited" Medicaid hearing on August 23rd. The building blew a transformer!!! I was the only member of the "public" allowed to stay. We still had phones, but we could only call out. We were able to get the judge in Lansing on the phone, and then he connected two other people in Lansing onto the phone line. He swore all of us in, and started to read my complaint. We lost the phone! I guess there was a real funny moment realizing, "Houston (aka Lansing), I think we lost Benton Harbor". Luckily my hearing is rescheduled quickly for September 22nd.

Healthwise, I have slowly been going down hill. My carbon dioxide level jumped 9% in one month, which signals there is a problem with my sleep apnea. I don't have carbon dioxide poisioning yet, but if I continue to decline, I might. I am now going to the University of Michigan to do a bunch of new tests. Still no oximeter! It didn't make it through Medicaid prior authorization in August. So I had to have all these people do things so that it could go through prior authorization in September. Luckily, all six people, did everything they needed to, and so it is already submitted to Medicaid for this month. It's all a game that the government is playing. It is rationing care for me not to have this oximeter for 7 months, when it is something that can save my life. Our medical system is so screwed up.

Anyways, that's the news. No interviews pending. I go back to sub teaching next week. It's been a long summer!

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Thursday, August 20, 2009

Not quiet anymore...

Well, it's not quiet anymore. I had a phone interview yesterday with Columbus, Ohio. Then another district near Columbus called, and I have a phone interview on Friday morning. And then a district here in Michigan near Lansing called, and I have an in-person interview tomorrow there. And then the Columbus, Ohio district decided they want me for an in-person interview on Monday. Where did my quiet go??

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Monday, August 17, 2009

Quiet days...

After all the turmoil this summer, this past week has turned into a quiet, sweet time. No work, no interviews, etc. I do have lots of preparing to do. I finally have my "expedited" hearing from Medicaid on the 27th! I only have had to wait since April for it! I also have lots of paperwork generally, so I have put the computer in my bedroom, which helps because there is air conditioning in that room only. I didn't realize how much I have been "heat sick" in recent weeks. But I am cool now!

Also this week, I'll be working the booth at the county's youth fair for the Democratic club. That will be fun!

Enjoying my "quiet"...

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Thursday, August 13, 2009

Not going to Cleveland.

After yesterday, I decided to write the school district near Cleveland and tell them that I couldn't afford to come because of the cost. They are going to do a phone interview instead. Maybe it will work out, in that they were willing to consider a "real life" problem. Who knows.

Still discouraged from yesterday. I can't change my past or my lack of opportunities that others have. I've made good choices most of my life and that's all I can do.

I have had a headache all day. I probably had a bad night with the sleep apnea, and maybe the heart arrythmia. Since I still don't have the oximeter with alarms, I am unmonitored at night. I got an apology from my doctor's office today for delaying it 10 days in their office by not sending the prior authorization back to Apria, which may cause another month's delay with Medicaid. It's totally frustrating. Yeah, we have the greatest health care in the world, don't you know? Not, when someone like me can't get a needed piece of medical equipment to save my life in 5 months now because of insurance, Medicaid, home health care companies, and doctors juggling whose responsibility it is. So tired of the struggle,

Laurie

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An emotional day...

Just a post about another job rejection. Basically she said at the interview that it was great that I was different and an independent thinker--that my gift to the profession is being "out of the box". But then her reasons for not hiring me, was that I wasn't "in the box".

Here's part of a letter I wrote describing my day:

received this email during my lunch break at Blossomland. I was in a class where I can be myself. Basically, the aides knew my skills, and wanted me to physically work on the kids (actually they are 15-20 years old, but still kids to me). All of them have some kind of problem that needs either occupational or physical therapy to resolve. Not one gets therapy. They are in pain. Once I had worked with them, they all became more animated and smiling and happier. Their negative and self-stimulating behaviors stopped. They started talking (some of them can talk, but don't). It was amazing what was happening, and even the aides noticed a great difference in their functioning,

This was great, but also was making me feel so sad, as I could do this everyday, these kids deserved it, yet I can't? That I have to leave to survive despite this great need?? Then I got the email at my lunch break. When I came back, I didn't tell the aides about the email. But this low functioning girl, came up and sat on my lap and put her head on my shoulder, like she knew I needed comforting (this hadn't happened before). After five minutes like this, she started crying. I started crying. I have a gift that not many people have with these kids, and I always have--people saw this in my past--I won human service and humanitarian awards in California. But because of money, I can't share this gift with these kids I care so much about? Even the lowest functioning kid can sense how wrong this is, but these so called professionals can't?

I did "pull myself together", as I realized my sadness was affecting the room, and became lively and fun to compensate. I then went to Fred Upton's for the "sit-in". I have told so many people about these kids needs, including him. Yet, I was politely not welcomed there. They had taken the chairs out of the reception area, so really it was not a "sit-in". I was told I could leave a message for him. How do express all I feel about this lack of health care for these kids in a message, and what my situation is because of my need for medical care? I explained who I was, and that I would send an email to him directly with my concerns, as it isn't something I could say in a sentence. I left.

Anyways, it's all getting to me. Even if I have a great interview, I'm not going to fit into their "box". While this should be celebrated, that I am an independent thinker, and have great intiution and care for those I serve, they want a drone. I am still emotionally split on going to Ohio on Friday. Even if I have a good interview, things like what happened with the Illinois ISD could happen there. And I can't afford it either financially, even though I have made reservations.

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Wednesday, August 5, 2009

I'm defintely not McKmama with my readership...

I was surprised today that the health club gunman yesterday had a blog. I read it. For a year, he had been planning his "final exit". I guess no one read his blog. Maybe it could have been prevented. But I understand this man's loneliness but not his actions. Maybe his blog was a way to reach out to people, just in case someone was reading his blog.

Over a month ago, I stated that I was sexually assaulted. Yet, not one comment. I've come to conclusion nobody is reading. I'm not McKmama, with thousands of replies, mostly of support of what she is going through. I go through all of this alone. Everyday. The fairness of it all is getting to me. It's unfair that I am treated badly by Michigan as far as Medicaid. It's unfair that I have to move out of state to get a job when their is dire and desperate need here in my county. Everything is about money. I can't even get an oximeter to save my life after 5 months. I just don't get the unfairness of this all. Stellan can be flown to Boston on a private air ambulance, but I can't get a $1400 piece of medical equipment? I have to deal with the sexual assault alone? I don't see many bloggers who have to live on $335 a month after Medicaid like I do in Michigan. Yes, I am jealous. But I have a right to be. I am ill, so I should lose everything??

I try to be a good person, I really do. I reach out to those I can. I'm just tired of being ignored. Blogging doesn't seem worth it to me anymore. It's more like my private journal now. And I don't see a benefit to keeping it on-line. I'd better sign off. I'm still hopeful for a better future, but today I am totally down in the dumps.

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Friday, July 31, 2009

Job rejections abound!!!

Too many job rejections to count. I'm down to one school district, but it is one I want. Freaking that I may have to stay here and try to live with no changes to my financial situation with Medicaid. Health though is going well. Medicaid mess is getting settled. Progress is being made. It's just hard sometimes to keep the faith that life will get better from here.

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Saturday, July 25, 2009

"Hot property"

I am feeling like "hot property" career-wise. There are at least two districts in Illinois that I think will hire me for the next school year. That's in three weeks!!!!! I wish I had a firm job offer though. It's hard to make definite plans, i.e. applying for an Illinois license, without a firm offer. I am just going to let everything happen as it may. I know how to solve some problems that might come up, i.e. going to an office to pick something up directly than waiting for mail.

Emotionally, I am pretty much back to normal. Not to go into detail, but also I was vindicated with a situation from last fall. In October I had to report a non-profit agency regarding their bad business practices, including missusing state funds to the State of Michigan. If I didn't report these illegal actions, I would have been seen as colluding to provide falsified records to the state, which is grounds to lose my occupational therapy license. I lost friends and job opportunities because of the situation. Rumors were spread that were cruel to me. Well, in recent months, 5 more people came forward to report the agency to the state. The agency I reported to, is now in trouble with other state agencies for not doing anything after I reported.

The state came down and closed the agency on Monday, and seized their financial records. It's terrible that hundreds of people will lose their services. But it is the director's fault. The agency was salvageable after I reported. But she kept up her corrupt ways, even after I reported her. She dug her own grave, and finally, the consequences of what she did is rightfully being directed at her. The rumors were that I caused all of this, i.e. the agency to close, but finally the truth is making it through the grapevine. There might be more ramifications. It's not public yet, i.e. local newspapers on what happened. That's probably because the state of Michigan screwed up so bad, they want to keep it under wraps. But anyways, it says a lot about my character that I stood up against this, had terrible consequences, but persisted. I did what was right and truthful. I am proud of how I handled this situation.

Life has definitely been "interesting" lately!!!

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Tuesday, July 21, 2009

Much better...

Everything is much better--physically, mentally, and spiritually. I am coming out of a major post-traumatic stress episode pretty well now, and life is returning to a semi-normal. I have 3 job interviews in 2 states in the next two days! I will update more afterwards... Laurie

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Friday, July 3, 2009

rough time

Everything has been a whir these past few weeks, mostly with good things happening, i.e. job interviews, etc. But what I haven't mentioned to many people is that I was mildly sexually assaulted last week in Chicago...think groping..it only lasted about 2 minutes. I did the right things, i.e. pretending to press an emergency button on my cell phone and saying I was going to scream if he didn't leave. It's not the worst that has happened to me by far, but I am in a full-blown PTSD episode because of it, mostly physical symptoms.

My body is doing weird things...such as I gained 12 lbs. in 5 days, and it's not because of eating or any known medical cause. I think my body/hormones are trying to store weight...my weight has always been my armor against sexuality and men paying attention to me. I have repeated sexual assaults/rapes throughout my lifetime. I've been in counseling forever, and have made great progress. It is so scary though that I am having such physical symptoms...either extreme pain throughout my body or completely numb. I also seem to be having problems with my sleep apnea/breathing at night. I've increased my oxygen, and pressures on my sleep apnea machine.

It's difficult also because I am really in need of medical advice because of my medical conditions, but I am not at a point of telling my doctors yet. My counselor knows, and gave me advice, but I don't know if it is enough to handle it all. Plus it's a long holiday weekend to top it off.

Please pray for my well-being and recovery from this. I know I'll do well, but I need to face that it has happened again. Thanks.

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Monday, June 29, 2009

Crazy week!

It's been crazy ever since I came back a week ago. The good news is that three school districts are interested in me, in north central Illinois. After a 7 hour train ride each way, on Thursday, I interviewed with one. I would have to say that it wasn't my best interview yet, but give me a break...it was 103 degrees outside, and I had traveled so far. Today is a two day trip to Grand Rapids to have an appt. with my sleep apnea doctor. Again, on the train!! My car is acting up, so that is why all these train trips.

The diet is going well. I am down another size... I have lost 45 lbs. since the surgery. I went to the orthopedic surgeon, and we are beginning to do the tests for shoulder surgery...my clavicle needs to be hacked off at the end! It probably can't be done in July, but possibly early August. If I am to return to work, this is important.

Still lots of stress on the homefront. Medicaid people drive me nuts. Still no Medicaid. And my "expedited hearing" request is now three months old and the hearing hasn't been scheduled. I just love the State of Michigan. I ended up in the ER on the way to a meeting with them -- prescription drug reaction, I'm okay... but I can't get one person to call me back at Medicaid. I think being in the ER is a valid excuse!!! My town, Niles, is becoming a ghost town. So sad.. everyone is leaving (including probably me) because there is no work to be found, and all but one major business has closed down in recent months.

On a more happier note, I had my hair colored and cut yesterday. It looks great. Need to get moving, Laurie (lovey)

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Sunday, June 14, 2009

On vacation...

Just a short note that I am on an extended vacation. I took the train from Michigan to Seattle and stayed two days, before my family from California joined me. Then we took a 7 day Alaskan cruise...fun, a great time. Tuesday, I am flying from Seattle to San Francisco (my family is flying into Santa Rosa) and I am staying two days. Then I take the Amtrak train back from San Fransico to Michigan. Having fun.. Laurie

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Saturday, May 30, 2009

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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Sunday, May 24, 2009

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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Wednesday, May 20, 2009

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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Tuesday, May 12, 2009

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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Monday, May 11, 2009

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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Sunday, May 3, 2009

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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Monday, April 27, 2009

Feeling yucky...

Saturday night scared me. I still feel yucky and not myself. I contacted three of my doctors today, and not one got back to me. No news on the new job... which is probably a good thing after the ER visit on Saturday night. I hope they are just deciding and checking my references. I can't concentrate and everything is overwhelming to me today. I have lots to do, yet nothing is getting done. Tired and grumpy... Feeling like I have to make some decisions whether it is still safe for me to live alone when I am going to have medical emergencies like this one. Ugghh. Too much to think about.. good night...

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Sunday, April 26, 2009

Okay...back from ER

I am back from the ER, 3 hours later... They think I had a hypoxic episode related to my sleep apnea. They are beginning to see a pattern that anytime I have fast weight loss, they trigger these hypoxic episodes. I am supposed to consult my doctors and specialists, including the bariatric surgeon on Monday. My electrocardiogram and blood tests at the ER were normal.

So, just another bump in the road....

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Scary episode tonight...

I woke up from sleep tonight, and was gasping for air, and in extreme pain in my right upper body. I put on my oxygen and laid back down, and after 1/2 hour I was back to "normal". This was probably a "hypoxic" episode caused by my sleep apnea, where despite my sleep apnea machine and oxygen, my oxygen level went too low. Scary!!! It's hard because I live alone; if someone was here, they could have rushed me to the emergency room.

But now I see fine, but I am "packing" for the emergency room. I am the only person I know who has to pack up for the ER! I have to pack my sleep apnea machine, my crushed medications, and copy my recent report from the University of Michigan...

It's just probably either I wasn't get enough oxygen or I am dehydrated or something. But I need to be monitored and probably have some blood tests, so off I go. Just a bump in the road, to remind me I'm not "normal", in that I do have medical conditions...

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Wednesday, April 22, 2009

Possible new job and 100 volunteers!!!

I had an interview for a pediatric occupational therapist position today. I had been pretty down the last few days, because I realized it was an independent contractor position, and wouldn't have medical benefits, and that unless it was only a few hours a week or many hours a week, I couldn't accept the job, because I have to be able to be on Medicaid (very low income) or I have to earn enough to pay my COBRA health insurance and the expensive co-payments that Medicaid pays. I hated that medical issues were once again crushing down on my opportunities these past few years.

Well, it turns out it would be a perfect position! Right now, there is only a few children in therapy, so it is only a few hours a week. But they so much want to expand the program, into many areas including teens, many summer programs, and OT play groups. I meet with the agency director tomorrow, but it looks like I am hired. I explained my whole situation to the therapy supervisor, and she thinks we can work around Medicaid in that we can make a contract up to the maximum Social Security and Medicaid income levels before it changes my benefits. And if the Freedom to Work Medicaid reform bills in the Michigan legislature pass, then we can renegotiate my contract!!! This is the best possible situation that I could have at this time.

It also means that I will be able to actually do occupational therapy with the children in Berrien County that I have been advocating for more therapy services for over a year, as there is a lack of therapy services (and actually any type of services) for disabled children in the county. There is potential that I could help write grants to start new programs and finally help these children be served. The down side, is that my position is tied to agency funding, and their funding has been recently cut because United Way cut the agency's funding because of the economy. But, if the agency hires me, there are tax credits because I am in vocational rehab... So it might be best for the agency to hire me over others because of the credit!!!

I am very excited!!! And the other good news today...an email I sent to the local democratic club about the Freedom to Work Medicaid reform bills in the Michigan legislature (that help fix the broken Medicaid system here in Michigan so that it rewards people of SSDI for work instead of punishing them) has been going around the Democratic party leaders here in Western Michigan. I received an email today from the Michigan Democratic party, offering me a phone campaign to get these bills passed that has over 100 volunteers!!!! I don't even know what to think of this yet, as I want to get through the job interview with the agency director first, but this is exciting news also. My advocacy efforts are finally paying off...

Great day!!!

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Monday, April 20, 2009

"Dirty" pure oxygen!

Well, the guy came out from Apria Healthcare to exchange my oxygen concentrator. He discovered two problems...I had it in an outlet with a extension to share that outlet, so it was not getting enough electricity. This one was my fault.

But the other problem is Apria's fault. When they delivered the oxygen concentrator in December, they didn't tell me about its filters! They are supposed to be washed every other day. Mine were caked with dust and such since they hadn't been washed since Christmas!!! He says I have been breathing in all that dust and dirt through the oxygen concentrator... so my "pure oxygen" is dirty!!!! Live and learn,
Laurie

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Sunday, April 19, 2009

Getting back into the groove of things...

Everything has settled down a bit. Good news -- I have lost 23 lbs. since the surgery 1 month ago. The bariatric surgeon and the dietitian were concerned, until they analyzed my nutrition and calories, which were great. They just think it is my body responding well to what is going on. I was a little behind in that I was vomiting a lot of soft foods, and had to go back to liquids for awhile, but during this week, I've caught back up and am on "normal" foods. It is so complicated right now with the nutrition, supplements, medications, and keeping my hydration levels in balance, given that I am on 3 diuretics for my heart. I'm having to actually look for signs of low blood pressure, and dehydration, since the lap-band surgery has put this all out of whack.

Add to that, that my oxygen concentrator (the machine that produces oxygen from room air), seems to be malfunctioning. I use oxygen at night now, that flows into my bipap (sleep apnea machine) Last night, it was turning itself off (an alarm goes on when it does), and making buzzing noises. I've been having some trouble with insomnia and not feeling rested after sleep the last few weeks, which I attributed to stress, but maybe it was the oxygen concentrator. It hadn't even occurred to me to think that the oxygen concentrator wasn't working right. I have an "emergency" oxygen tank that will last through tonight, but I will have to stay home tomorrow to have them bring me a new oxygen concentrator. I have been enjoying going to sub teach this past week, so that is a bummer.....

I may have a job interview this week as a pediatric occupational therapist here in Berrien County!!! There is a small clinic in St. Joseph, which is a large town next to Lake Michigan. There are only 2 therapists, and I thought neither of them would be leaving. I actually volunteered with them over 3 years ago, when I was first starting at my previous OT job. My previous employer gave me no training, but sent me out to do therapy right away with no mentor. So I sought out these OT's to help me learn mostly how to communicate pediatric occupational therapy to their parents. I am awaiting a call back with the time of the interview.

I also had a good doctor's appt. with my new primary care doctor. I "fired" my other primary about 3 weeks ago, because for the millionth time, he deferred my primary care to my specialists, which is not good, because the specialists don't want to do his primary care, and I end up not getting care for the problem. One of his partners, a woman doctor (yeah!), is taking over my care, and we had a great appointment, which ended with hugs... I am excited that things should be better from now on. And it was my last scheduled doctor's appointment for a month!!!! Yippee!!!

Well, I have emails to write to the Michigan legislature...they are up to no good, diverting Medicaid monies from the Economic Stimulus to other programs, instead of helping people like me have full Medicaid. Uggghh...it's all about the money....
Take care,
Laurie

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Friday, April 10, 2009

Lazy week...

It's spring break, and there is no sub teaching work this week. No medical appts. I've been very lazy this week. I've watched some videos, read, and went to a few movies. I haven't wanted to exercise...I am not being good on that side of my weight loss.

I am physically though feeling back to normal. The "high anxiety" is lessening. It is sort of nice to be bored at times this week, after all that has happened in the last few months!!
Take care all,
Laurie

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Wednesday, April 8, 2009

Another day...

It's been an interesting day. I am developing some sleep problems... I think it is because the gunshot was at 5 a.m.--when it was dark... I am up all night the last two nights and sleep all day. This is okay this week because it's spring break, and there are no sub teaching jobs and no medical appointments.

I was referred to Adult Protective Services by someone at the Department of Human Services. They called my counselor at Riverwood Center, and had him do a "welfare" check on me. This just ticks me off. I say I am too stressed to come to the meeting, so suddenly I need psych intervention that I can't arrange on my own? Adult Protective Services is for people who don't have the capacity to help themselves out of a situation...such as elder abuse or abuse concerning someone with a disability.

Yes, I am concerned disabled, but I am quite capable of asking for help and I know what is best for me. If the person had actually called me from the Department of Human Services and had a conversation with me (nobody actually talks to me from there), he/she would have found that I am having a stress reaction within the "normal" range for such an incident, and my thoughts and fears are rational, i.e. I fear somebody coming back and mistaking my apartment for the "drug" apartment next door, which is the theory I most believe as motive for the gunshot.

I just ended up feeling like people there at DHS were trying to discredit me, in that I have some valid complaints on how they are handling my Medicaid case. It seems to be a tactic popular these days against me. Last October, I whistleblew on a agency to the state that I was on the board of directors of, for producing fradulent documents. I did this to protect my occupational therapy license. The director and the president of the board were my friends. They haven't spoken to me in 6 months now, but I am okay with it, as I have a moral compass guiding me, and can sleep at night knowing I did the right thing, not like them. But in retaliation, they have been telling people that I am psychotic, and the state didn't believe my accusations, as they were "psychotic ramblings". This is so untrue...the state believed every word, and added items to a plan of correction for the agency. So this is not the first time the "let's just label her crazy, so we don't have to change or deal with the truth" has been used in my small world lately.

Well, it's 4 a.m. -- I think I'll try to sleep again. If I don't get back into a good pattern soon, I'll talk to the docs about medication to regulate me. Such fun...

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Tuesday, April 7, 2009

Trying to not let it get to me...

It's been rough the last couple of days. I have been in "high anxiety", but it is easing. I was freaked out yesterday, and didn't leave my room, because it is behind a brick wall. But today, I got out more, and went to counseling (we tried not to use the word "emergency", but technically that was what it was). The police think it was random, and a gang initiation rite, but my neighbor is under investigation for selling marijuana. I think the gunshot has to do with my neighborhood. I thought of putting a sign in my window with an arrow to the drug dealer, but I think that might be going overboard!!
I'm back to rational fear though. If it is the neighbors, then the people might come back to finish the job. I am being careful, in that I look if I am going to the kitchen or living room to see if anyone is in the parking lot. My "good" neighbors in the apartment complex are looking out for suspicious activity in the parking lot too, so that is easing my fears. The police are checking our parking lot more often than usual. Maintenance for the building came today and patched up the bullet holes...but I still am aware they are there.
I vomited anything I tried to eat or drink on Saturday, and I am sure it was because of anxiety. I went back on liquids for awhile, and tonight I was able to go back to ground/blended food...meat that is tuna-fish texture. I also had hives all weekend, but they went away today too.
I was much better in being able to concentrate today, and I finished tons of Medicaid paperwork. I think I faxed 25 pages!! There is supposed to be a meeting tomorrow with 3 people at the Department of Human Services about my case, and what happened with my worker. I am supposed to go, but after the gunshot incident, I said it was too much of a stressor to drive a distance to get there, sit in a waiting room with a bunch of people who I am not comfortable being around on a good day, and talking to a group of DHS workers I have never met. I have a fax machine and I have supplied them plenty of information all along. They need to be able to actually do something without me there.
I've lost 20 lbs. since the lap-band surgery. I'm fitting into many of the clothes that were given to me last year. I see the surgeon next week for my one-month post operative appt.

Well, off to bed...

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Saturday, April 4, 2009

Gunshot through my wall.

Scared sh@itless! At 5 am, I heard a loud pop. Thought it was my oxygen machine. I woke up this morning to a gun shot through my wall and into my kitchen ceiling. My landlady says the people in the next apartment are selling drugs. Police are here investigating...

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Friday, April 3, 2009

Newest letter and responses, Grand Rapids...

I had a great time in Grand Rapids. I went to an IMAX theatre and saw Monsters vs. Aliens, and then a great museum I spent 4 hours at. Then I went to the Taj Mahal of YMCAs--the Grand Rapids YMCA. They had a steam room and whirlpool just in the locker room. And then I went to a Goodwill thrift store outlet, that sold goods by the pound. I got 4 down pillows for a $1. The doctor's appointments went well, and the sleep apnea doc gave me good advice. The dermatologist did quite a few things, including taking off 3 moles on my back and sending them to be biospied. I'm not worried anything will be wrong as far as the biosopies.

Medicaid is still giving me heck. I got a call this morning from my worker's supervisor, ordering me to a meeting on Tuesday with her, my worker, and the supervisor's superior. I'm not sure how I feel about the meeting yet.

On with better news. I wrote a new letter to the Michigan legislator's and I am getting phone calls and return emails about it this morning. Here's the letter:


Re: dreams deferred...
Friday, April 3, 2009 11:26 AM
From:
"District 80"
To:
"Rep. Jimmy Womack (District 7)" , "Rep. Lesia Liss (District 28)" , "Rep. Tom McMillin (District 45)" , "Rep. Jim Slezak (District 50)" , "Rep. Kenneth Kurtz (District 58)" , "District 81" , "District 91" , "Rep. Tim Moore (District 97)" , "Rep. Andy Neumann (District 106)" , "Margie Hadsell" , "Michuhcan" , SenBHardiman@senate.michigan.gov, SenGJacobs@senate.michigan.gov, SenMJansen@senate.michigan.gov, "senator jelinek" , "Laurie alderman" , "Tracy Madden" ... more
hideAddress('addrExpand_to');
Cc:
"andy District 17" , "District 20" , "Sharon tyler other Rep. Sharon Tyler (District 78)" , "district District 105" , "fred upton" , "mr. ahmed" , "debbie stabenow" ... more
group",
----------------------------------------------
Laurie

Thank you for the e-mail and I appreciate your support and advocacy for House Bills 4707 and 4708. As per my voice mail, I wanted to give you a little more information on the status.

Along with Rep. Jim Slezak, I introduced the most recent Freedom to Work legislation this week. The bills will also be introduced in the Senate by Senator Gerald Van Woerkom and Senator John Gleason. We are hoping to arrange an organizational meeting in the next two weeks to determine if the proposals will need any changes. The meetings will include representatives from ARC of Michigan as well as the Disability Network. I will make sure that our offices keeps you up to date on any activity and we will do everything we can to get this issue moving.

Again, I appreciate your e-mail and please do not hesitate to contact my office directly if you have any additional comments or concerns.


Sincerely,

Tonya Schuitmaker
80th House District
(517) 373-0839


>>> Laurie alderman 4/3/2009 7:24 AM >>>
I spent a few hours yesterday watching the Michigan House and Senate tv broadcasts of a very busy day in the legislature. All it ended up doing was making me angry. I did not see one mention of health care. All the bills that were asked to be "sped up" for reading, didn't include 4707 or 4708, the Freedom to Work Medicaid reform act. Yet, health care reform is supposed to be a priority. Yes, you need to help fix the economy. But even the unemployed will need to remain healthy in this time of need. That is an immediate need..none of your "economy fixes" will produce short-term and needed help like health care reform would.

I watched a program on PBS this week on Frontline about health care. I can't get out of my head one of the points of the program, that under the American health care system, people's dreams are crushed or deferred because of health care needs or situations. One example was a talented college student who became sick during college. In order to get adequate medical care, he had to drop out of college and work at Lowe's. This is just one example of squashed dreams. How many other millions of people in the U.S. have had their dreams squashed because of health care needs??

My need for adequate health care, has trampled on my dreams. When I came back to the U.S. from Australia, where I received my master's degree in occupational therapy 4 years ago, I had great dreams and visions of my future. But at the same time, my health started failing... First, I had to deal with having a full time job (more than full-time--70 hours a week), and a crappy employer health insurance policy. I spent around 50% of my income on medical, even with insurance. I had to endure more than I should have with this employer...but I had to "put up with it", so that I could keep my health insurance during my illnesses. My need for access to health care came before my well-being or health. This situation nearly killed me 2 years ago.

From this work situation, I went to the "welfare" situation, and suddenly the Social Security Administration, the MI Department of Human Services, and Medicaid/Medicare rules were imposed on me, so that I could have health care access. This access has been life-saving, as I have recently learned from the University of Michigan. Yet at what price??

I am a highly educated person, who loves people, espeically others with little or no voice, i.e. the disabled. I am able to break barriers of the hardest to reach people in our society, i.e. I have a "gift" in reaching those people with autism. I have won human service and humanitarian awards. I've been called a saint more times than I care to admit as it embarasses me.

Yet, every decision I have made in the last four years and in the present make, is about health care access. My lifestyle is crappy, and I live in extreme poverty because all of you in the chambers of both parts of the MI legislature have chosen to do so. I fight with Medicaid and the DHS every week, just to have my income limited to $420 a month after my Medicaid spend-down, because all of you in the legislature can't enact fair and just legislation, that allows people like me health care access. You can't even make a bill that would help me and from what I gather 19k cohorts in Michigan, a priority, to allow us on SSDI awards above the poverty line, fair access to Medicaid under the Federal Freedom to Work Medicaid act. You all allow this unjust situation in that you have done nothing, as evidenced by a report I found from 2005 stating the unjust nature of the MI Medicaid system and need for reform. You have failed to make Medicaid a fair and just program for those us on SSDI. Instead, you reward laziness and make incentives for people not to work. How many dreams have you all caused to be deferred or crushed because of this inaction?? You have caused my dreams and hopes to be crushed over the last four years.

I didn't understand until now, the true reason why socialized medicine and universal health care is so important to those residents of countries practicing it. It is a matter of dreams and providing for equal access to those dreams for all. Universal health care allows people who are ill, and who work hard to achieve success, to have the same shot at achieving their success as healthy people. What cost has the U.S. as a whole had in that people have their dreams and achievements crushed by health care needs and costs? Yet, we are the country that believes in the American dream, that if you work hard enough, you can achieve your dreams and have equal opportunity to do so?? I guess the writers of the "American Dream" forgot a caveat that you have to be healthy or not need health care to do so.
Please, please, put House Bills 4707 and 4708 (the Freedom to Work Medicaid reform acts) on the fast track, instead of burying them. Give me an opportunity to dream again about my future and be hopeful again.

Sincerely,
Laurie Alderman

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Tuesday, March 31, 2009

Grand Rapids tomorrow...

I'm off to Grand Rapids tomorrow, which is about a 2 1/2 hour drive. You wouldn't believe the problems I have had with getting Medicaid to pay for a hotel--a whole $40 expense to them. But my doctors all agree I shouldn't do it round trip because of the surgeries, and my sleep apnea/tiredness.

I've been having a rough time sleeping lately. Partly it is pain. My left shoulder hurts slightly and is inflammed from the anesthesia still. My right shoulder has an impingement and I will have surgery in the fall. If I sleep on my stomach, the incision sites (5) hurt, and I don't think it's good for me. If I sleep on my back, my sleep apnea goes out of control.

So this leaves me with few options!!! I am going to see if the sleep apnea has any ideas. I am also going to talk to him about adjusting the pressures and upping the oxygen on my sleep apnea machine. The surgeon says I am not even supposed to drink out of a straw because of the extra air, yet all night long I suck high pressures in from my sleep apnea machine...aaghhh.

I also have a dermatologist appointment for a skin check...there are no local doctors that take Medicaid here. Proves that medicine is all about the money here.

I'll be staying overnight, and then on Wednesday, going to a museum before heading home.
I'm looking forward to getting out of town.. Laurie

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Friday, March 27, 2009

What a difference a day makes...

I woke up and read amazing news. I get an email each day about what is happening with the Michigan legislature. Yesterday, they introduced a bill to reform Medicaid, that would allow me to earn up to $75k and keep Medicaid. It would allow me not to have a Medicaid spend-down of $950. I would not have a pile of paperwork each month with Medicaid. I could give up my expensive COBRA health insurance. I would actually have enough money to live on, instead of the $420 limit I have right now for "living expenses".

It was written by two representatives I don't even know! I have been emailing back and forth to the speaker of the house of representatives, so I don't know if he was involved or not. But at least I'd like to think right now that I was heard and that I am going to be partially responsible for great changes for the disabled here in Michigan.

I loved the little kiddos this morning. I have glue all over me from the kids doing their art project. I then went to the orthopedic surgeon. Yes, I do need shoulder surgery. But he wants to wait because of the recent surgeries and to see if I lose weight, whether that will effect the structure of my shoulder. He thinks surgery would be good in six months to a year.

Then a letter from the CEO of the hospital...a little apologetic, but I guess that's all he's allowed to say.

Then, a call from my primary doctor's nurse. She said the letter was written (by my doctor's partner) and wanted to know where to fax it.

Then, a call from my sub teaching employer. They have complained to Michigan Medicaid that I got a threatening letter. They had been submitting reports too. It's the government that is messing up.

Then a call from the sleep apnea's doctor nurse, saying that he had called my primary doctor and made it clear that I should not drive long distances, especially now after the surgery.

So what a difference a day makes...
Laurie

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Thursday, March 26, 2009

So angry I'm seeing double...

The last 24 hours have been very stressful. Everybody I talked to let me down today. I am so stressed, that I have exotrophic eyes...I see two visual fields at times, because my eyes won't converge. I had it right after surgery last week, but the stress of today has brought it back. Luckily, right now I'm seeing normally.

Where do I begin? I guess with health insurance. When I went to pay my monthly health insurance premium, I found it had increased by $85 on March 1st to $695 a month. No notice, not a word from the insurance company on this. It messes up my Medicaid paperwork terribly. But I can't get an explanation.

I received a letter from the Michigan Department of Community Health in Lansing, threatening to cut off my Medicaid eligibility in ten days, if I did not fill out the form from an workman's compensation accident in September--an autistic boy headbutted me in the mouth and I had five loose teeth. My dentist monitored them for months, but luckily I didn't need more dental work. The workman's comp claim is for $85 for the dentist visit. I have filled out the accident report 3 times, another 15 pages or so of other forms from insurance etc, and took about 5 calls on this. My employer is the one who is not doing their job. But they threaten to take away my Medicaid because of what my employer didn't do???


Then, this morning I receive a call from my Medicaid/Department of Human Services worker. I have done tons of paperwork based on what a head lady at the State Capitol of Lansing had told me to do, i.e. that my Medicaid spend-down had to be re-figured each month on my actual income, rather than their overestimated income from sub teaching. I have been doing all this paperwork for a week, and calling my worker repeatedly to no reply.

My worker called and said that she wouldn't work on my medical transportation, redo my budgets, help me book the hotel in Grand Rapids through Medicaid for my sleep apnea clinic up there, etc. When I told her that she was legally required to do this work under Medicaid laws and policies and that she had been told this by the Lansing Medicaid policy supervisor, she said "This is how we do things at Berrien County DHS, and I am not going to do any more work than I have to do my other 600 clients. When I pointed out that Lansing had told her to do the work, she said she didn't care what Lansing wants, this is how it is going to be. Then she ranted on about how I expected too much, i.e. my trip to the University of Michigan in Ann Arbor. She was nasty and rude, so I hung up on her.

About an hour later, I receive a fax from her with 3 more forms to fill in, all that I have filled out repeatedly. I had sent her a paycheck stub to validate my March income, but she wanted to ask me to send a lengthy form to my employer, and have them estimate my future income. Umm, the company can't even file a workman's comp claim right. You can't estimate substitute teaching income, and especially now while I am recovering from surgery.

I wrote her and told her I wasn't going to fill out the forms, if she wasn't going to follow the policies and Medicaid laws. She left a patronizing voicemail asking who my doctor was, and insisted I fill out her forms.

I realized that my doctor probably hadn't filled out a form and wrote a letter to her, as he promised on Monday. First, Dr. Gomez makes this lame excuse that I need to be seen for a surgical followup, and that's why no letter. I had seen him last week, and my surgeon on Monday of this week, so I told him it was no excuse and to write the letter asap. I actually had wrote the letter to my worker...all he had to do was concur that because of my sleep apnea, I should not be driving long distances. He had this letter request for over a week, and did nothing until today.

My doctor always defers to the specialists, and has them do his primary care work. He never makes independent medical decisions. He even did it last week, dumping his work on the surgeon's office. So today, he has his nurse call me, and say that he did not have enough evidence to support that I shouldn't drive long distances, that he needed my sleep apnea doctor's opinion on the matter. My medical record at the primary doctor's is over 5 inches thick, and there is plenty on my sleep apnea. The nurse then said that actually everybody thought that my sleep apnea doctor should do the letter, and I should bring in my sleep apnea records to him tomorrow.

Then, the nurse calls back and says that my Department of Human Services worker called and was wanting to know why I couldn't be seen by a local doctor. It was none of her business!!! I travel 2 hours to see the Grand Rapids doctor because the doctors around here are incompentent. They nearly killed me 2 1/2 years ago at a hospital in South Bend, letting my oxygen go down to the 50%s for over 10 minutes without doing anything. I sought out a respected sleep apnea doctor in Grand Rapids, and mostly I have received good care from him. But my primary doctor's nurse was insisting that I could see a local sleep apnea doctor.

But my sleep apnea doctor and my primary doctor really screwed up from September to December. I couldn't get any response from my sleep apnea doctor's office to my suddenly deteriorating health. I finally convinced the primary doctor that I needed an overnight pulse oximetry test to find out if I was destating at night. I was--up to 2 hours under 88% with my sleep apnea machine on. Every respiratory therapist in town said I needed oxygen.

Well between bad communications, a physician's assistant of the sleep apnea doctor who labelled me psycho, my primary doctor, and their staffs, insurance problems, Medicaid problems, I waited 7 weeks for oxygen. I had to have a second overnight oximetry test that showed the same pattern of destating each night. My cardiologist had a fit that nobody prescribed oxygen for me, so he got things going. By mid-December I started on oxygen, and within a week, there was a great improvement with my health.

So I was not going to go through a nightmare of being bounced between the sleep apnea and primary care doctors this time. I wrote a letter to the primary doctor that didn't mince any words. I told him to contact the sleep apnea doctor and have this resolved. Then I sent the letter and a cover letter to the sleep apnea doctor telling him what was going on. This better be resolved tomorrow. I refuse to do anymore. I'll pay for the transportation rather than go through this ordeal.

I called the Medicaid lady in Lansing very upset this morning, asking for help. Not a word from her. I called the legislative aide that is supposed to be helping me. He was reluctant to help, because the State Representative was new. I told him that it is a state agency, and the representative's predecessor had clout and things got done, so there is no reason the new representative should not do anything.

The only decent call I got today was from the nursing director of Lakeland Hospital. She was very unhappy with what I told her happened as far as my nursing care and whole experience after my lap-band surgery. She was going to have a few "choice words" and a "powwow" with a few nurses, so this will never happen again. My bariatric surgeon is threatening to pull his program out of the hospital after what happened to me, but I didn't let on that I knew that. She apologized on behalf of the hospital and promised change. That's all I ask.

So see why I am stressed!!!! Anyways, tomorrow morning, I am going back to work and will teach preschool/head start for 4 hours. Then an appt. with the orthopedic surgeon. He might do surgery on my shoulder next!!!!! Aaaghhh... But I might as well get it all done at the same time.

Take good care all, Laurie

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Wednesday, March 25, 2009

Update...

It's been an interesting nine days since the lap-band surgery. Basically, the surgery went well. It's what happened afterwards that is overwhelming.

As they were taking me to my room from recovery, the main fuse of the elevator blew. I was stuck with 2 nurses in between floors on the elevator for 1 1/2 hours. We all remained calm, and they worked up an extension cord to the elevator, so the nurses were able to keep track of my vitals, etc. The only thing that ticked me off, is that the nurses told other staff to tell my mom in the waiting room that I was stuck in the elevator. They didn't tell her anything...they kept telling her I'd be up in a little while... My mom thought that "a little while" in Michigan was quite different from what it would be in California. The maintenance staff gave me a teddy bear, which I nicknamed "Elly" after the elevator and some gift cards. They say this is the first time the elevator has broken down with a patient on it in the history of the hospital. Just my luck!

I had horrible care in the ward of the hospital. First of all, they combined two floors because the census count of the hospital was low, to save money. They put me in a what is usually a private room, with a women with a respiratory illness (I think pneumonia)... since I was post-op surgical, this is a great risk for infection and illness to me. This woman was the worst roommate ever. She had up to 6 very loud visitors for over 5 hours. They had no respect that I was in the room. She took up 2/3 of the room, crowding me. She butted her nose into every conversation I had...I had no privacy.

The nurses were not surgical nurses. I had a labor/delivery nurse. I had some unusual side effects of the surgery, such as exotropic eyes...where I see two visual fields and my eyes don't converge. I called my nurse, and asked her to note it in my chart for my surgeon to see. I found out yesterday, that it wasn't even noted in my chart. The doctor's orders were for me to be walk and be escorted every hour with the walking, after 5 hours of recovery. I was the one who at 3 a.m. asked to walk, and I did for over an hour. I was not escorted, as the doctor ordered. There were other things, such as my IV went dry, and I called, but nobody came for 30 minutes to give me a new IV bag.

Then at 6 a.m. I was given my meds and this bottle of liquid to drink. I was told I was having a GI series, and I thought it was some kind of laxative in preparation for it. Then at 9 a.m., I am sent down to radiology. There is a long talk of where my order was. The radiology people then left me for about an hour alone on the x-ray table. When they came back, we figured out what had happened. I was supposed to be in radiology for a swallow study. The bottle of liquid that I thought was a laxative, was actually the contrast liquid that I was supposed to swallow for the swallow study. And my surgeon told me yesterday, that they gave me too much of the contrast liquid to begin with.

So, the swallow study couldn't be done, and I was told I'd probably be spending another night in the hospital. Luckily, my surgeon came and sprung me from the hospital in the late afternoon, without a swallow study. Generally, my recovery has been good. What is surprising is that my shoulder hurts badly...it's a side effect of the anesthesia, and my incisions look good.

I've lost at least 4 lbs. this past week--the surgeon thinks it is much more, as I am retaining water, and yesterday he put me on diuretics. I am up walking -- I am walking a mile a day, and I am supposed to walk 2 miles a day by the end of the week. I just finished also giving myself 2 injections a day of heparin. My big accomplishment yesterday, was that I was able to put on my own socks!! I have been on a clear liquid diet for a week (broth, jello, etc.), and today I got to start "opaque" liquids, i.e. yougart and cottage cheese, milk, applesauce.

My mom went home to California today. I really enjoyed having her here. It made me realize how much I love her and my brother. I am hoping that we can come back somehow to live together in the next few years.

As far as the hospital goes, I have written a letter to the hospital administration and today, I mailed it to the nursing supervisor, etc. My surgeon is furious about what happened to me, and is threatening to pull all the bariatric surgery from this hospital. As far as elective surgery goes, bariatric surgery is the most profitable program the hospital has. It could be interesting what happens because of my bad treatment by the hospital.

As far as Medicaid/health care reform and my legislators, nobody is calling me back or answering my emails. I had to fill out a stack of forms the day after discharge for Medicaid. I still have another stack for medical transportation with Medicaid for my out-of-county visits to doctors. Nobody does their jobs around here, and nobody cares what happens to me.

It is horrible that I have had 2 surgeries in 2 weeks, am oxygen and power dependent for my medical equipment and the State of Michigan, in all it's wisdom, allows me $420 (of my $1500 disability and sub teaching income) to live on this month, when they know my rent alone is $495. But not one action has been done to help me or change the situation. The government rewards laziness and people who have never worked, not ill people like me who have paid taxes for 30 years of working.

Generally in good spirits, but writing this is getting me down... I'll update again soon..

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Sunday, March 15, 2009

Lap-Band surgery Monday a.m.

Off to lap-band surgery in the morning!! Back Tuesday afternoon, if no complications!

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Saturday, March 7, 2009

Newest letter to legislators

Well, since I haven't gotten a reply or response from anyone who would actually help my situation, I have been planning my future, given that I am only allowed between my wages and my Medicaid spend-down, $420 to live on, when my rent alone is $495. I really did like the look of the Mackinac Room in the Anderson House Office Building in Lansing when I was there last week. Is there a local store that takes Food Stamps?? But I might want a change of scenery, so I might want to go look at the meeting rooms in the MI Senate's office building. Or maybe somewhere else in the Capitol, i.e. governor's residence. All I need is an outlet to plug in my oxygen concentrator and my sleep apnea machine. If I don't want to roam too far from Niles, I could plug in at Fred Upton's, MI Representative Jalinek's, or Sharon Tyler's local offices. What's the worst that could happen to me? Arrested?? I'd get free housing, electricity, medical care, and meals, all 24/7. It's a much better situation than I have now.

There are a couple of other alternatives I could pursue for my future. I could get pregnant. Yes, it is still possible. I am sure I could find a sperm donor, willing and able. I would qualify for so many programs if I was pregnant or had a child. What sense does this make?

My other option is to be hired by you all. It's not like I'm unskilled. I have a masters degree in occupational therapy, a graduate certificate in Holistic Health Care, a graduate certificate in Public Administration, and a Bachelors in Business Administration with a minor in social welfare. You all have spent the dollars in helping me achieve my success, mostly through the excellent services I have received over the years from Michigan Rehabilitation Services. Anyone that hires me, receives tax credits. If you all hired me, I could get out of the system. I could give up Medicaid, and actually be "allowed" more than $420 a month to live on. I mean a government job is the way to go. When I read the MI legislative journals, all that seems to be enacted on, is securing government workers futures and health, and preserving birds and battlefields. I am officially (electronically),am putting out my cardboard sign, saying, "Will move to Lansing for a government job, so I am allowed to live on more than $420 a month".

Or I could run for office. Oh yeah, you have to have money to run, and there are no elections right now. Not to pick on my local legislators, but Fred Upton's family owns Whirlpool. Sharon Tyler's family runs the only sustainable business in Niles. I swim at the Y in the Tyler swimming complex (thank you Sharon). But I'd contribute so much to "reality" of all of your decisions. I spent 3 years in Sydney, Australia, getting my masters, and can tell you from an insider point of view, a wonderful model for universal health care that exists in Australia.

My life is not supposed to be this crappy. I worked hard to achieve my successes, i.e. education and overcame enormous obstacles to do so because of my disabilities. Any of you could be in the same situation if you became ill. You all have destroyed the Freedom to Work Medicaid legislation in Michigan, and every program rewards those who have never worked or are not wanting to work, and the "system" rewards laziness. Heaven forbid, I might want to work to the best of my ability when I am able to be well enough to do so. It's a matter of pride. But I am punished in many ways, especially over the last year, for working.

And, just to let you know, I am not one of those "welfare cases" that society complains about. I have never taken any recreational drugs, smoked, drank alcohol or done anything in my life to hurt anyone else. I have repeatedly been a victim of crime, though. I don't trade my Food Stamps for crack or smokes. I followed the "rules". I used to have a good life in California, where I won a few humanitarian/human service awards before my health deteriorated.

I need help, and Michigan needs change. I am disabled..federally disabled; I am supposed to be a "protected" individual. Instead, I am treated worse than a criminal for the only "crime" of being ill and disabled. Please actually work on legislation to help me, rather than ensuring all of your futures and health. Or you are only working on legislation that helps birds and preserving battlefields. I think there are many more pressing issues right now.
Enable me to have Freedom to Work Medicaid, so I have some kind of future. If not, I am willing to travel to have that outlet for my life-supporting equipment in your offices....

Sincerely,
Laurie Alderman

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Friday, March 6, 2009

Well, after 5 months of waiting, I was finally seen by the University of Michigan Sleep Disorders clinic. I ended up being seen by 5 doctors---they each kept getting their supervisor...
What it get downs to, is that my sleep apnea is so severe, there is a high mortality rate. 3 years ago, when they did the first sleep study, I stopped breathing 450 times in 6 hours. And even though I have been very compliant with using my sleep apnea machine (cpap), people usually deteriorate over time, and usually have a stroke or heart attack or they simply die in their sleep within a couple of years.
But I am the exception to the rule. I have improved in the last three years, in that my heart is in better shape and my apneas, most of the time each night, are much less. However, because I have been losing weight, this has upset the homeostatis/balance that I have achieved with the sleep apnea, and this is causing "destating" episodes. They think though that the added oxygen at night is helping me compensate during these episodes, and that's why I have seen great improvement since I am on it.
They think the only reason I am alive is because of the weight loss (100 lbs. in 2 years). The main option for treatment is for me to continue to lose the weight. They feel I have a good prognosis to overcome or greatly lessen the severity of my sleep apnea. They like that I am having the lap-band surgery in a little more than a week. The other thing, is that when I am closer to my goal weight, is to have a boob job (breast reduction). The weight of my boobs is causing some of my problems.
This has been a lot to take in, but it is good to know that I have done everything I should have to make myself better. It also strengthens the need for my weight to be dealt with now, rather than later.
I'm trying to set up a bigger support system, because this is much more serious of an issue, and will need support to reach my goals. Everyone take care of yourselves, Laurie

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Saturday, February 21, 2009

February happenings...

Things have been quite overwhelming lately. Now I am not "allowed" to read or talk about anything I can't control, especially the government, i.e. the economic stimulus or Medicaid!! There are some good things going on:

1. My lap-band surgery is scheduled for March 16th. My mom is coming from California on March 13th to help me for a few weeks. I'm excited, but scared at the same time...it's even more of a life change than I have made in the last few years. I have lost though 100 lbs. in 2 years. The lap-band will help me lose the rest to be at "normal" weight.

2. My health is very much improved since I have been on oxygen at night (since mid-December). It took only 7 weeks for the doctors and insurance company to approve it for me. There are great signs that it is working. I am going to the University of Michigan in early March to the sleep apnea clinic, so hopefully they will be able to figure out what is going on with my sleep apnea.

3. I am also possibly going to have shoulder surgery in April!!! Let's get it all done why I am covered so well for my medical care...

4. I am going to the state capitol, Lansing, this week to a legislator's luncheon. I will be an example of "how even with Medicaid and having a brain, the government screws those on disability".

5. It's another birthday for me next weekend...

6. I got my federal and state tax refunds :) !

7. I am enjoying lots of snow days here in Michigan. I've really become a Michigander now. Nothing gets to me now with the weather.

8. Sub teaching has been a blast lately. One fun job was alternative education (17-19 year olds), and I learned many things, like how the economic crisis has changed the local illegal drug trade. I would never have thought about this, without subbing. In March, I will be subbing in a preschool for Head Start (4 year olds). I love those little guys!!!

I've promised a little on my story, especially how I went from Sydney, Australia to Niles, Michigan. I "transferred" to the University of Sydney in Lidcome, Australia, (where the 2000 Olympics stadium is), because I was being discriminated and retaliated against at a U.S. university because of my disabilities. I was not being provided my Americans with Disabilities Act accommodations. I had at that time, some lingering affects from being hit in the head by my autistic clients --- I was hit over 200 times over two years. I fought for accommodations, and ending up taking them to the U.S. Department of Education/Office of Civil Rights. I did "win", but the university continued to retaliate against me. Meanwhile, my family went on vacation to Australia. I went in and talked to 5 universities when I was there. I loved their philosphies on occupational therapy. I went back to the U.S. and applied to all 5 and was accepted! The University of Sydney was wonderful to me...I got every disability accommodation I asked for the first day, plus even more, that I didn't ask for! So much for the American's with Disabilities Act.

My course in Australia was wonderful, and I had very caring professors. I still love Australian occupational therapy. Here is the U.S., it's all about money. I lived in the nurse's quarters in a local hospital for 2 1/2 years, while attending the University of Sydney. Life was great there. Unfortunately, I did become a victim of a crime while there, but I was treated much better than I would have been here in the U.S. I had a whole new life set up in Sydney after graduation. Unfortunately, at that time I started having cardiac issues, and couldn't pass the medical exam for becoming a permanent resident. Australia is very strict on their immigration, mostly because of their socialized medicine. So I had to return to the U.S.

I couldn't afford to live in California after graduation, so I went to a place with a low cost of living, where I had a few friends living there...Niles, Michigan. It's very economically depressed, and definitely "midwest". The first year after I returned, I had to wait awhile, and study/take a U.S. National test for occupational therapy. I did pass on my first try. I went to work in early intervention (birth to 3 year olds), and worked for 2 years, travelling over 500 miles a week. It was just too much for me physically, and getting worse from working so hard. In July 2007, I stopped working and in December 2007, I finally got approved for Social Security disability. I enjoy working though, and substitute teach, mostly in the special education classes and the local severely disabled school. There have been no pediatric occupational therapist jobs listed in this area for over 2 years!!!!

I now am working on getting my health better, advocating for those who have little voice in matters that affect them, i.e. disabled children, and developing a life here in the frozen tundra.
It's not the life I imagined, but it is good.

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Friday, January 30, 2009

Well, I guess it's finally time to start a blog. I have quite a interesting history, which I will write more on later.

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