Neighbors (???)

A new next door neighbor, here in the 'fishbowl' has actually complained to the Management of the apartment complex about the noise my electric hospital bed makes at night.

Of course the new neighbor does not know it's a hospital bed making the noise that apparently disturbs his/her sleep. The complaint to the management was that I 'ran machines and played the TV all night".

I received a letter from the management. I got in touch with her and let her know about the hospital bed. And told her I did listen to talk radio at night, but kept the volume down. I also reminded her that I'd lived here almost 5 years and no one had made such a complaint before!

She said to make sure I kept the radio audio turned down as 'the walls are thin' and that of course, there was nothing I could do about the bed.

I thought it was bad enough to be sick, alone, sleepless, and worried about various things.

It wasn't! Now I also worry about how loud my talk radio is (I can't afford an under the pillow speaker), and if my bedroom window is open and how far the noise will travel.

Worse yet; I allow myself to become VERY uncomfortable, or IN PAIN, before I change the position of my head or foot settings, not wanting to bother a neighbor.

This seems to be of no avail. Every time I adjust my bed during the night, this person, this stranger, actually POUNDS on the walls, no matter the time! Which of course surely is heard throughout the building and disturbs still more people (though it doesn't bother me, as I am awake already)!

I'm really sorry I'm disturbing this person's sleep! And I've tried to correct the problem to the best of my ability.

What I'd REALLY like to do is leave a note on his/her door saying: I was a 'night worker' for over 20 years! I didn't expect the children to stop playing or the world to go on 'pause' while I slept during the day. I got a sleep mask, a sign for the door, and EARPLUGS. I suggest YOU do the same!!!

Maybe if I did that, ONE of us would sleep better!

HH, My Story!

In the fall of 2002, my older sister, Donna Carter Cook, called to tell me she was dying of primary liver cancer. I was unbelieving; she was only 59, had not been a drinker, had not had hepatitis... She has since died.
CONCOMITANTLY, my own doctors (specialists all!), concerned about my gradually rising Hemoglobin and Hematacrit values, (with MUCH coercion!) finally ordered specific tests (in order): complete pulmonary function/negative, TIBC/some questionable (but not overly HIGH) values, and lastly DNA tests for HH. The DNA came back positive for the HH genes; I was Compound Heterozygous for both C282Y/H63D mutations. Compound Heterozygosity! I don't know who was more surprised; me or the 'doubting' doc! SUDDENLY, my world came into focus. A legitimate medical REASON had been found for most of my ills!
I was NOT a hypochondriac! I was NOT lazy (well, not very!). I was NOT an attention seeking nut!!! I was NOT suffering a forever clinical depression! A weight was lifted from me; all that internal questioning, self-doubt, and blame. (One of days I'm gonna send a letter to each of those docs who so blithely gave me the brush off over the years!)TODAY, many docs are uneducated as to 'genetic' disorders, specifically IRON genetic disorders, that even with the DNA tests in hand, they refuse, or choose, not to believe! I guide them towards 'resources', then find another, more sympathetic and interested, doc!
My own DIAGNOSIS of Hereditary Hemochromatosis came too late to prevent many of the 'complications' of HH that I suffer from though further damage might be prevented with treatment, simple treatment! Therapeutic Phlebotomies! (Perhaps even further cancers or recurrences could be staid off...)
DIAGNOSIS & TREATMENT did bring a gradual 'lifting' of the terrible, fatigue. By the time I was diagnosed I spent most of my time in bed. Not because I wanted to, but because I had no choice. I didn't lie there and read; I lay there like a log. If my head itched, I was literally too tired to raise my hand to scratch it. I'd actually gotten to the point where I thought I was just going to lay there and die from tired. Yet the docs could find nothing wrong! I took consolation in that perhaps an autopsy would find the answer...UNLIKE the HH literature indicates; that symptoms don't appear till mid-life; I'd suffered from varying degrees of fatigue, joint pain and muscle weakness since early childhood. (Research continues and 'modifying' genes are being identified.)
With treatment, the pall of fatigue GRADUALLY started lifting as my Hemoglobin and Hematacrit lowered. I like to think that my blood sugars are now easier to control (insulin), but that probably isn't the case. The Arthralgia remains unchanged.
I am out of bed all day! I get dressed and comb my hair every day! I can shower daily! And I have plans for a future 'active' life! Miracles happen!
SO, if you have physical symptoms that have gone 'unexplained', if all the tests come back 'negative', don't give up HOPE of finding an answer and perhaps even treatment!
Get a different doc. And still another doc! Have the tests repeated and repeated again. Look towards 'rare' disorders and conditions. Do research on the web! Join all the 'lists' of folks with similar symptoms. Ask questions! If I hadn't done all this, I'd probably be 'dead' in my bed from 'tired' by now...

IP's, even MORE red tape... (Thanks Arnold!)

My state, county, pays for a certain number of hours per month for specific aged and/or disabled people to have the 'help' they need to stay independent.

This CAN include, depending on your needs: laundry, general housework, help with personal hygiene, shopping, cooking, general errands, and medical transportation.

In itself, this is a great and good concept, but the program itself is set up on a 30, or more, year old model. AND to top it off, was really set up to 'compensate' relatives who care for the disabled of any age, with a pittance.

I am currently 'assessed' to receive 12 hours a week in services. Which roughly breaks down to three 4 hour sessions per week.

The 'tasks' I'm approved for include: shopping, errands, laundry, food preparation, general housework, and shower/dressing help.

The problems are:
1) Few if any people want to do this work, even as a part-time extra job. If you don't have a willing relative (and many of us do not), good luck in finding someone reputable to hire, even it they don't speak, read, write your language.

2) The pay is minimal. There are NO perks (like mileage, vacations, sick leave, etc) for the caregiver. Not only are all the routine deductions made from the caregiver's check, BUT mandatory MONTHLY union dues are deducted, even if only 2 hours are worked that month!

3) Many of the services are DUPLICATES of services now available in the community, through companies/corporations that really do it better (and probably cheaper). But we, as recipients, are not allowed these choices.

SHOPPING: My pharmacy delivers for free. My wheelchair service folks come here. I use a 'Mobile Physician' that comes here for my Primary Medical Care.

And I now do all my grocery/household shopping on line. I get exactly what I want for a small delivery fee. Which is not reimbursed to me, nor is the 'time' deducted from the IP's hours!

HOUSECLEANING: I'd much rather have a professional service, trained folks, come in and do this, even it it were not so often. There are many, many companies out there who'd love to have the work!

LAUNDRY: BUY me an apartment sized washer and dryer and I can do my own laundry! And there are still 'fluff & fold' pick up and delivery services available.

MEDICAL TRANSPORTATION: We now have public Disabled Transit that will take us anywhere AT any time (NOT just during the time an IP might be scheduled to work). Curb to Curb service. Wheelchair accessible. Cost $10 round trip. Again, this would be cheaper for the county (on a limited basis) and much more workable for those of us trying to keep medical appointments. But we are not given this option. We all USE this service, but are not in any way reimbursed, nor can we get monthly 'tickets' instead of the scheduled 'medical transportation' hours!

FOOD PREPARATION: Give me that $$$ and I'll order more 'frozen' foods and individual serving canned fruits & veggies from the online grocer!

Not to mention restaurants that deliver, or a neighbor that would not mind going by a Fast Food place once in awhile.

There is only me: I don't have a great need for a Dutch Oven full of rice or stew or soup. Then too, there is MEALS ON WHEELS, but that costs $8 DAY here if you are not over 65, no matter HOW disabled you are!

These well meaning, government services for the aged/disabled REALLY ought to come into the tech society so that people's needs are better met, and their budgets would probably be reduced GREATLY.

Recently, there have been MAJOR budget cut-backs in our state. Many of these programs have been drastically reduced (Thanks Arnold!). And I foresee that many people who could remain independent with just this little bit of help, will end up in 'nursing' homes (that CAN NOT pass state or federal inspections), where they don't belong and wont be happy, and the state will be saving a few bucks on one side and paying out a fortune on the other...

And, by the way, I feel that Adult Children should be BILLED for a portion of these services to their parents if they choose not to help provide for them!!!

BUT is this what America is about - making the sick and elderly pay the bill???

Bread & Butter Pickles

Twice a month I order groceries (and related household items)from www.albertson.com.
They are delivered the next day.

Thank heavens for this relatively new online service! For without them, what would the sick/disabled do??? Not only do I have a complete online selection of routine and usual items, but they only charge me $10 for the delivery. (I'm sure THAT will increase with the gasoline prices.)

Currently, my power wheelchair is awaiting approval for repairs; I can not take it to the local stores. And the current housekeeper will not take me anywhere in her car! (Both these things will be changing eventually!)

But I digress! I LOVE grocery day! Buy the time I order, I am likely to be OUT of several necessities.

Not to mention the 'extras'. Like today I recieved a jar of Bread and Butter Pickles, something I haven't had for years, shouldn't have spent the $1.99 on now, but just had a 'taste' for 'em, and couldn't resist.

Once I'd decided to get some pickes, I had a difficult time deciding between Dills and Bread & Butter. It's been so long since I've had either! I finally opted for the Bread & Butter slices.

I think it's so sad that the aged, disabled, ill in America can't afford pickles! But, let's send some more BILLIONS to rebuild Iraq this month!!!

Peas & Carrots

My dinner was almost ready. The white plate was sitting on the stove awaiting the placement of the last item: peas & carrots.

I eyed the food hungrily but resisted temptation to take a bite. Just then the microwave dinged and I opened it to retrieve the container with last night's reheated veggie.

But my attention still must have been focused on the plate with the food already on it; I reached in for the peas & carrots, slid the container out, and somehow managed to slide it right off the counter!

It tipped right into my body, much of it's contents sliding on down to the kitchen floor. Luckily, I'd drained the veggies well BEFORE nuking them, so I had little or no liquid to deal with. Just peas & carrots.

A fast grab saved the entire container from hitting the floor. I carefully evaluated the remaining contents to see if there was enough left for dinner. There was. I scooped 'em out onto the plate.

Then I made the fateful decision; clean the floor now, or clean it after eating. Well, I was hungry!

After a leisurely, and good, may I add, meal. I took my plate, glass, and other stuff into the kitchen. I was fully prepared to clean up the peas & carrots from the floor in front of the microwave as soon as I washed my dishes.

Except there was no longer a little pile of peas & carrots. There was a pile of squarish bright yellow carrots. The peas had traveled all over the floor! In fact, they were traveling as I watched, dirty dishes in hand.

Lucy & Ethel, my kittens, had discovered a zany fact of life, peas roll!

It took me 2 minutes to wash my dishes, being careful to not step on a stray pea. It took me half and hour to separate the kittens from the peas, gather all the peas, and mop the floor.

When bedtime came, as I drifted off for the night, I was wondering how many peas were under the refrigerator, stove, shelves, that I hadn't been able to find. And how long it would take them to shrivel and dry up. And what the crew who'd clean the apartment when I moved out, would think. I almost couldn't go to sleep because I was giggling...

Time to get Down & Dirty?

I KNOW that many won't agree with me...

But I believe it's time to get hard-core, down and dirty, with the Saudis (and perhaps other Muslim country nationals?).

First, American civilians in Saudi Arabia should come home; cancel their passports and visa's! It is not safe for them there, (though they may believe otherwise) and the Saudi kingdom has proven to be unable to protect them.

Next, I think all visa's and passports should be revoked for the Saudis that are HERE. Send these people back to their own country to study, live, deal with their politics, extremists, and terrorists. Barring that, I think all Saudis living and working in America should be 'shunned' in the 'old fashioned' meaning of the term by Americans.

Don't talk to them other than simple yes/no's.
Don't rent to them.
Don't sell them anything but basic necessities.
Don't socialize with them.
Don't employ them.

Now this may SEEM harsh and even un-American. Especially as most Saudis living and/or working in America PROBABLY have absolutely nothing to do with terrorism or the death of Paul Johnson.

BUT, these people obviously need to go HOME and take care of business! Perhaps our government, indeed, world governments, can not take such a severe stance. But, each and every one of us in our personal daily lives CAN.

We can each wage our own war on terrorism. Individually, we can choose how we act and react to these strangers living amongst us, these expatriates of Saudi Arabia (and other problematic countries). I urge each of you to take the small actions mentioned above in your everyday lives; without being cruel, certainly without any physical violence, when and if you can.

Perhaps if it's not so pleasant HERE for them, perhaps if we don't make it so EASY for them to remain here, they will return to their home countries, and take charge...

Just one mad poet's opinion!

The Kitty Project

In December of 2003, I lost my feline companion of 16 years, Bebe. I was devastated!

I cried for days; walked around in a fog for weeks. Then I started looking forward to 'kitty season' and finding some more feline companions.

Little did I know... Spaying & Neutering programs have been SO effective (thankfully!) in the city where I live, that finding kittens turned out to be a crusade of sorts. Even the local animal shelter only had adult cats and one kitten here and there! Since I wanted TWO KITTENS from the same litter, you'd have thought I was searching for the grail itself. I followed up every newspaper ad, every lead. Let all my friends and acquaintances know I was looking... I did find some kitties; ALL FOR SALE. Even the plain ole 'housecat' variety kittens cost a bundle. The price for ONE kitten ran the range of $30 to $125!!! The purebreds, Siamese, Persian, etc, were much more! I was ready, since I live close to the border, to send a friend to Mexico to get me some kittens! (Wonder if ya can bring THEM across the border?)

Then one day, a woman called me from out of the blue. Someone had given her my phone number. She worked with an Animal Rescue group and someone had left a cardboard box of 6 week old kittens on her porch the week before. Was I interested in two, for free??? You would think this would be the end of the story, but not! First of all, I had to undergo a 'home visit' (which I had to wait a week for!). I offered to give references, Vets, etc. But no, my home had to be 'checked'. This nice retired teacher came, checked out my apartment, and chatted with me. Would the cats be kept inside? (Yes.) Who would care for the cats if I were vacationing, in the hospital, or died (My adult daughter.) She was concerned about placing the kittens with me because I am a smoker! Would I be willing to smoke outside??? (No!) I told her I hadn't ever had a cat die from lung cancer and she got a little ticked. And I thought I'd missed my chance with those particular kittens...

Well, a few days later, she phoned again. She could bring me the two kittens early the next day (right!). Of course, I got everything ready. Set my alarm and got up early (I am a night person!). And she called and rescheduled for the NEXT day. But the next day, the same thing was repeated. Finally on Thursday June 3, 2004, (after noon, though I'd again gotten up early) she bought me two adorable 7 week old kittens. They seemed to be happy, healthy babies; no runny eyes, noses, though a touch on the thin side. The Rescue lady told me they had been defleaed, dewormed and checked by a vet.

I was enchanted; fell in love on sight. They were exact twins: female, tiny, very short hair, and totally black. I invited my friends in to meet them. I named them Lucy (the larger outgoing one) and Ethel (the smaller, shyer one). And my apartment didn't feel nearly as empty. The quest had been worth it! That was Thursday afternoon. By Friday night it was obvious they were ill, at least with eye infections. Yet they ate, slept, played, etc. So I was planning a visit to the vet the first of the next week, yet I wasn't really very concerned.

Over the week end; they both got more and more ill. I even thought they might have kitty fevers. I was starting to get worried... Yesterday MY vet saw them. They both have pneumonia AND eye infections, which of course, they probably contracted at the Rescue Facility...

They each had an injection of antibiotic and steroid. They each got prescriptions of oral antibiotics, high powered vitamins, and eye ointment. He warned me that they would probably get worse before they got better... Last night, I didn't get much sleep. One of them was so ill, I honestly thought it could die in it's sleep. But we all made it though that long night.

Today, they are not quite as lethargic. They have eaten well, took their meds. But no playing, no visiting, they eat, potty, then go back to their chosen 'bed' and sleep. I'm STILL worried, but knowing they ARE getting the proper meds, and that they are eating, not 'quite' as worried as last night. Still, might be a long night...

If you believe in 'prayer', keep these two little 'fur' babies in mind. They did not deserve this!

Ocean Beach where the living is easy!

Ocean Beach is a community of San Diego, California, Zip Code 92107 (a semi-famous zip code; poems and tee shirts have been done). Where Interstate 8 ends at the Pacific Ocean.
Ocean Beach is place where the new is mixed with the old. New condos and old, small, square, wood frame beach houses. Long boards and Boogie Boards. New antique shops and other stores that have been in business for many decades.
The denizens of OB also run the gamut. They range from the semi-affluent (who seem to have only recently found the place), to the poor (the elderly, new immigrants, the disabled), to the not so invisible homeless. Poets & Artists, craftspeople, surfers, shop owners, bikers, we all share the same small corner of San Diego.
The beach is small, western facing, and beautiful. The dogs even have their own beach! The pier is one of the longest & oldest in the country. There are tidepools and cliffs...
I found it twenty years ago, and fell in love with it.
It has been said that Ocean Beach is more of an attitude than a place.

A Blog???

What's a blog???

I've spent some time researching this question. I've now read a goodly number of 'em, and I still don't know exactly what they are. Or more practically, how to 'blog'. (But I'm gonna do one anyway!)

I've even spent a lot of time finding 'blogging' services (free ones!), and compared what was offered. Then I tried some of them out. Finally (leave it to Google!), deciding on 'blogger' as offering what I needed in a 'blog'.

I have developed a vague idea of what I want to do (and why) with a 'blog':

• I want it to be first and foremost, readable
• I want it to 'share' my lifestyle
• I want to make a 'statement' regarding being sick and poor in America
• I want it to be honest
• I want to 'share' my life as a poet
• I want to create a column of sorts
• I want someplace to SAY the things I wish I had
• I want to explore my life; past & present

More importantly, I know what I do NOT want my 'blog' to be:

• I do not want some black background with unreadable text
• I do not want it to be graphics heavy (the 'word' is the thing)
• I do not want it to go unread
• I do not want it to be 'just personal angst'
• I do not want it to be wishy-washy; if folks get mad, oh well...

So, hold on to your socks folks; here we go!!!