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

Read more...

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

Read more...

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

Read more...

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..

Read more...

Lap-Band surgery Monday a.m.

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

Read more...

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

Read more...

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

Read more...