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January 2010 - Posts
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Notice: Not for the squeamish
The past three days have been very frustrating. I’ve been so fatigued and having a lot of diarrhea. Today I have these sores in my mouth on my tongue and on the inside of my right cheek going down to the gum. This evening the runs are back too.
I think I find fatigue the most frustrating symptom to deal with and the one that causes me the most emotional distress. Physical maladies and pain are no picnic, don’t get me wrong – but at least for me, they don’t evoke the same emotional fallout that just plain being so tired does.
Friday I did get a lot done, even though I felt tired all day. Saturday I accomplished nothing. No housework. No HPS work. Nothing. I was in the bathroom every 30 minutes to an hour. By evening the Lomodel had taken effect and the runs were slowed down, but I felt wiped out by the day. I also felt dehydrated.
Dehydration is a funny thing. At first you might feel thirsty, but once you get past that, at least for me, I don’t desire anything. I don’t feel like drinking, or eating. I just feel like sleeping. I have to fill up a big glass of water or juice and force myself to drink it because intellectually I know I need it.
I have a theory that if you get dehydrated before you realize it (because you’re sleeping a lot), that it somehow affects your brain and it’s harder to snap out of it. You’re not aware that you need to make yourself get some liquids in you.
Today I got up at eight. I haven’t been to church in a while (seems like I’m never home or if I am, I’m not feeling well.) I felt like today was the day I was going to get my schedule back on track! I felt good. I felt awake. I took a shower, washed my hair, put my church clothes on and as I was brushing my teeth I looked down to realize I had dripped blood all down my front. My nose was bleeding.
Great! Just Great!
The nosebleed wasn’t severe and I had it stopped in 10 minutes – but it made me late enough for church there was no point in going.
By noon I was having a code brown – guess it’s a good thing I didn’t go to church or I would have been there. I’m at a much higher risk for code browns when I’m having a lot of diarrhea as the liquid seems to seep under the seal easier.
I changed my appliance and then lay down on my bed to apply the necessary 10 minutes of pressure to the stoma site. That was about 12:30 pm. Sometime around 8:00 pm I woke up.
Total frustration!
The entire day got away and I have SO MUCH to do.
It’s hard not to feel a lot of guilt about fatigue because you feel like such a lazy person. Even if you know there’s a good reason why you feel so tired – when you are so tired it’s as if someone else suddenly takes over your body. When they give it back to you – when you get enough rest and you wake up feeling great, and you realize how much time has gone by, it’s just downright frustrating.
This leaves me with the dilemma tonight. Do I go to bed at a normal time? If I do, will I sleep?
I almost feel like I need to pull an all nighter in hopes of getting my schedule back into a normal pattern. I also want to pull an all nighter because I need to feel a sense of accomplishment. I haven’t accomplished anything for several days and that list of things to do is in my brain eating at me. I need to get something done.
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I feel like I’ve been neglecting the blog. I’ve been very busy working on HPS projects and so it’s distracted me from self reflection.
I have this growing stack of grown-up things to do on my desk that I’ve been avoiding. I dread these sorts of things that are really just part of life.
Tomorrow I need to take a good chunk of the day and make phone calls, one after the other. I’ll probably spend most of the day in voice mail hell.
First, there’s the strange letter I got from the Kansas Department of Revenue. It’s on the right stationary etc. but it seems so strange that I can’t help but wonder if it’s a scam – thus the need to call.
Essentially, the letter tells me that my 2008 taxes have been “adjusted” and I was found not to be eligible for the food sales tax deduction. I have someone do my taxes, but we go over the forms very carefully together. In 2008 I took the standard deduction. I don’t remember, nor have I ever heard of, this food sales tax thing. Why would they be telling this now, a full year late?
Even stranger, the letter seems to indicate that I owe money, but I can’t tell how much as it never just lists an amount. There’s an attached chart in five point type I can’t make heads or tails out of. Maybe that’s supposed to tell me what I owe? Groan….
The letter also has numerous grammatical errors – another red flag.
Then there’s the latest insurance issue.
My new lung doctor decided that to treat my acid reflux, we should double the dose of my evening medication. My reflux was getting so bad that even with a CPAP etc. I was having a lot of reflux at night – sometimes even to the point of vomiting. My dry cough was also worse and that can be brought on by reflux.
I had enough of the medication that I just doubled up for a month to see if the solution would work. Sure enough, the improvement is noticeable.
Here’s the trouble.
This medication is available over the counter at 20 mg. I need 40 mg. My insurance doesn’t want to cover it because although the 40 mg dose is by prescription, technically I can double up on the OTC version. The problem with that is a month’s worth at the higher dose is a couple of hundred dollars. And, since it’s OTC, it doesn’t get applied to my Medicaid spend down total.
There is an alternative drug that is by prescription only I can try, but the doc thought this would be a cheaper solution. I have to call the insurance company and find out if the other drug is covered – and if so than for me, the cheaper option is actually the more expensive drug (even though the “cheaper” drug is working fine.) I think this is an example of the waste in the system. It’s also a pain for me as to resolve this will not just involve calls to the insurance company, but also the doctor and the pharmacy etc.
Then there’s social security. We’re still trying to work out what is a “work expense.” I’ve got to work on that tomorrow too.
I hate paperwork!
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I suspect I'm not the only one that has wondered what happens to people with disabilities in times of natural disasters such as what has happened in Haiti. We'd be an easy population to ignore, forget and leave behind. Here's a press release that was posted to the Genetic Alliance online group. While it doesn't say much about what's happening right now, it is nice to know the thought occurred to someone. Perhaps as the ground settled, there will be special ways those of us with disabilities can pitch in to help. If I hear about them, I'll pass them along. I also hope that efforts are not limited to only those with mobility impairments. I suspect, for example, that the population with albinism is in dire need of sunscreen as so many people are afraid to stay inside for fear more buildings will collapse. USAID – Response to Disability Issues in the Haiti Response and Recovery Efforts
“Disasters are always inclusive. Response and recovery are not, unless we plan for it.”[1]
USAID is actively working to ensure that the needs of people with disabilities are being addressed amidst the response and recovery efforts in Haiti . USAID’s is acutely aware of the access and functional needs of people with disability and is working to offer service providers and coordinating bodies the information required to guide inclusive response efforts.
A Working Group (WG) of technical experts from USAID, the Federal Emergency Management Agency (FEMA), Department of Homeland Security (DHS) and the U.S. Department of Health and Human Services (DHHS) has been formed and has begun to establish guidelines and procedures for a coordinated U.S. Government response to the functional needs of Haitians with disabilities. The WG is also developing strategies for the emergency, transitional, and long-term phases of the recovery efforts.
Immediately, the Working Group will:
- Recommend that disability issues be formally represented at Task Force Meetings.
- Consolidate information on U.S. Government (USG) agency involvement in Haiti and expand the USG Working Group as necessary.
- In consultation with Disabled People’s Organizations (DPOs) and other experts, develop and disseminate resource documents and tools on best practices to ensure the response and recovery is inclusive of people with disabilities.
- Compile information on who is doing what in Haiti with regard to disability in order to access existing capabilities on-the-ground to rapidly expand services.
- Ensure Federal Agency response to disability issues is documented and disseminated.
In addition to working directly with other Federal Agencies, USAID will coordinate its efforts with DPOs and the Global Partnership for Disability and Development (GPDD), who has established a Working Group focused on the reconstruction of Port-au-Prince .
USAID’s Leahy War Victim’s Fund, Wheelchair and Disability programs have extensive experience in restoring mobility (through provision of physical rehabilitation, artificial limbs, wheelchairs, mobility devices) and have promoted inclusive development practices in over 50 countries worldwide. USAID will engage with its development partners to assess their current level of involvement in Haiti , guide recovery efforts in a coordinated fashion and make funds available for recovery and development efforts in the future.
If you have questions or need additional information, please contact: Rob Horvath, rhorvath@usaid.gov or Sue Eitel, seitel@usaid.gov
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Oh how I'd love to have a good vent about this - but I'm so swamped with trying to work with Donna and the office on the HPS Conference, that I just haven't had the mental energy to tackle it. This is another summary from the American Thoracic Society's newsletter. It's very brief. I chose it becasue they write a nice summary. Keep in mind it is a summary though.
Health Care Reform - What Next?
While House and Senate Democratic leaders are still scrambling to make sense of Sen-Elect Brown's victory in Massachusetts, it is clear that the election results will have a significant impact on the health reform legislation. Prior to the special election on Massachusetts, Congress appeared headed towards tweaking the Senate health reform bill and attempting to pass the bill before President Obama's State of the Union address.
Now both House and Senate Democratic leaders are appear to have abandoned the Senate bill and are considering a number of other options, ranging from passing only those provisions that have bipartisan support, to using budget reconciliation (which requires only 51 votes) to passing the more controversial elements of health reform, to restarting the process from scratch, to giving up all together.
House Democratic leaders are currently considering a two-step plan to scale back the reform legislation and pass budget-related measures through the budget reconciliation process, which requires only a simple majority vote in the Senate and a series of smaller individual bills on issues such as insurance regulations.
The issues that are under consideration for inclusion in smaller bills are insurance regulations that have some support among Republicans, such as a prohibition on coverage denials based on pre-existing conditions, eliminating lifetime and annual caps and prohibiting insurance companies from rescinding coverage when individuals become sick. Medical malpractice reform, transitioning provider payments to a value-based system and expanding coverage through tax credits are also being discussed. The House Democratic leadership has not yet commented on these proposals, so it appears that it will be a few more days at least before a clear House-Senate strategy on health reform emerges.
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This is an independent film I watched a few weeks ago while recovering from one of my headaches. It was released in 2009 and is rated PG – 13. It’s about a divorcee from Palestine and her son who immigrate to the United States in hopes of a better life.
Like so many that migrate, the United States wasn’t everything they expected, nor was life as easy as they’d hoped – but in the end they manage to settle in and start to build relationships in their newfound home.
The film moves a little slow in places. It isn’t an action film for sure. It does, however, almost have a documentary-like quality to it in the way it follows the family and their emotions.
There is one scene in particular that reminded me much of my own family’s migration to the United States. The mother has carefully hidden her life savings in the baggage to protect it. Unfortunately, she hides it in the wrong place and it disappears.
When one of my great great grandfathers and his family came to the United States from England in the 1800s, the same thing happened to them, only with a happier ending. He had hidden their money in the pillowcase at the place they stayed their first night in America. The next day they set out for the day not thinking that the stash would be discovered by a hotel maid. The maid took the money – everything they had in the world. When they returned, the money was gone!
You can imagine how sick they were. The next morning a maid knocked on the door and had the money. She scolded my great, great, grandfather for not hiding it better. She had taken it so one of the other maids wouldn’t.
God was definitely looking out for them!
At any rate, I’d give this movie three and a half spoons out of five.
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This is a movie I remember my family renting when I was in high school, and it was a delight to watch it again. It’s about the last Emperor of China, who ascended the throne at the tender age of three. As history would have it, China was in the midst of undergoing great political change.
In the midst of it was this poor little last Emperor of China who, it seems, never really had control of his own life. The movie follows his life story from his crowning at three, to his spoiled upbringing inside the walls of the Forbidden City, to his forced abdication, to his role in Manchuria with the Japanese during the Second World War, to finally his existence as an average Chinese citizen.
This is a movie for adults, although with the exception of a sex scene it isn’t too family unfriendly. The content, however, is historical and would probably be of little interest to younger viewers.
I give it four and a half out of five spoons.
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I'm copying this information from www.igive.com. Anyone who could pass this along and help us we'd greatly appreciate it. Hi Heather,Last month, we tried something new to help Hermansky-Pudlak Syndrome Network and all the causes listed at iGive. It worked better thanwe ever expected. We donated over $5,000 in less than 24 hours, so we're going to try it again!It requires your participation, but it is free and definitely easy.For each person who joins iGive using the special link below and does just one qualified web search on our site between now and noon Thursday, we'll give Hermansky-Pudlak Syndrome Network a dollar. 5,000 new members, $5,000. No purchase necessary. That's 5,000 new members for all causes, not just yours, so it's a bit of race.Of course, if these new members search more (or buy something at an iGive store) they'll earn even more money for Hermansky-Pudlak Syndrome Network. Right now, we're donating a special $.02 per search and a bonus $5 for that first purchase plus the usual percentage.Here's where you come in. The only way Hermansky-Pudlak Syndrome Network will get new supporters and that free $1 (or more) is if you invite them. Send your friends, family, and colleagues the following link in an e-mail, tweet it, do a Facebook posting, put up posters, shout from mountain tops (you know the drill) and let them know you think Hermansky-Pudlak Syndrome Network is pretty cool and deserves their support, especially since it's free! You can even just forward this e-mail.This is the link: http://www.igive.com/welcome/warm_reg_promo.cfm?m=427355 We're really proud of our search capability, powered by Yahoo! We've made tons of improvements over the past five months, so we want lots of people to try it out and put it to the test. If they keep on searching or shopping after testing us out, so much the better for Hermansky-Pudlak Syndrome Network.The details: - Offer active between now and 11:59 a.m., January 21, 2010 (Chicago time). - New members only (never have been an iGive member previously). All the normal rules of membership, searching, and purchasing apply, our site has the details. - Once we've given away $5,000 in total, the offer ends. - The special link is important. No link, no qualified web search, no $1.That's it. Don't forget to try our search yourself (http://isearch.igive.com). You may need to login first.Yours,Robert N. GrosshandlerFounderP.S. We've added a little something new. If you want to track how you are doing, just visit http://www.iGive.com/html/referralsreport.cfm. If you want to track how your cause is doing, please visit http://www.iGive.com//html/causestats.cfm .
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 Thanks for all the lovely notes about the painting. I do plan to start trying to sell more of my artwork. It feels funny to sell something you just love doing so much. This painting is now sold. In another week or two I should have another one finished. I'm working on two right now. One is a watercolor. It's a picture of the front stoop of an old house I just thought was interesting looking. The other is another landscape, but this time not in the winter. It's at hay making time and it's a very midwestern looking farm scene. They are both smaller than this painting.
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It's getting to be that time of year. Those of us in HPSland are anxiously counting down the days until our next conference. I'm going to start posting "conference teasers" in hopes of enticing some of you to join us. In the meantime, the registration forms have been mailed out. If you haven't recieved one, they should be available on the Web site any time. Matt is working on that as I type. This year's theme is "Believe in your Dreams!" The dates are: March 19 - 21st. Check out the HPS Network Web site at www.hpsnetwork.org.
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Today was a frustrating day. My computer was experiencing “technical difficulties.” I still don’t know why, or whether any of the tricks I tried actually fixed anything, or whether these difficulties will return. As Chris put it, these computers are like people. They have personalities of their own.
So true – and in fact I was experiencing the cranky side of my computer, nick named “Baby” this morning. Baby was having a tantrum this morning and Mommy wasn’t happy at all.
What is it about human beings that we feel the need to attribute human qualities to non-sentient objects? We’ve done it since the cave days when some humans thought Gods lived in the trees or the rocks or the camp fire. Are we so different, so progressed? I’m convinced there’s somehow intention behind it when this machine crashes.
Does it somehow make it easier for us to understand malfunction if we can attribute feeling to it?
I wonder, do the technically gifted, more versed in the malfunctions of machines, feel the same need, or is it just a superstitious tradition left for us technophobes?
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 These are photos from the jam session at Echo and Karen's house at New Year's Eve. The big black dog is Ashley, a long lost friend as much as any of the human guests. Ashley is my friend Tina's retired guide dog. The family that has him now brought him to the party to see everyone. Of course, everyone that knows Tina knew Ashley. Yes, that's Ashley, as in "he" - think Gone with the Wind. "Ashley, I always loved you.....Ashley....." We alwasy joked among my girlfriends that Ashley was the token male in our group. He's quite a character. Some of his more memorable moments: Ashley always thought he was a lap dog, even though he probably weighs 70 pounds. If you sat on the floor, he'd come running over to literally sit in your lap! One time while Tina was cantoring at Mass, Ashley proceeded to eat the berries off of the Christmas decorations on the alter. The whole church didn't know what to do - to stop the Mass and tell her or to let him chow down. I once saw Ashley steal an entire dessert off a tray without so much as pausing - he didn't lose a step! He was a sneaky fellow sometimes with a one-track mind - food - where's the food........maybe that's why we liked each other so much. HA!
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 The mountian in the distance here - behind the tree - is Cheyenne Mountian - home to NORAD. In the big bad cold war days, this was the hub where the nuclear war would have been managed from - where the orders would come to launch the nukes. I'm sure they've got all sorts of new missions now. If you're a child of the 80s and you remember the movie "War Games" this is where the computer lived......they used to give tours until 9/11. It's a shame. I'd love to take a tour!
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 We interrupt this blog for a completely self-serving advertisement. Usually I donate all the funds from any artwork I sell to the HPS Network. This time, however, I'm selling some artwork for me - however its for the Network indirectly. Some of us are planning to stay an extta week in New York and thus if I sell this painting, the funds are going to my New York or Bust coffee can. The asking price is $80. This is a 16 by 20 acrylic. The title has a double meaning. It's a winter scene yes, but it's also what I did while I was getting over a bad cold in December/January. Sometimes when you feel bad it's hard to do higher thinking things, like writing a grant. But you can do mechanical things, like paint. When I couldn't seem to focus on the other HPS things I needed to do, I worked on this. I don't do many sunsets, so my technique there is, well, a little lacking. But hey, it's art. It isn't supposed to be perfect. I wish I had a better way to photograph my artwork.
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