InvisibleDisability

Dueling Banjos

2009-02-23T22:06:00.001-05:00

This could be long and rambling.

Basically, it comes down to me having fought with and stayed angry at my sponsor and my sister.

I keep looking at the arguments, what I was trying to say, how I said it, how they perceived it, how they responded and then how I reacted.

I'm just not seeing me over reacting in it. If I did, I have no problem saying so, apologizing with full contrition, but I just.don't.see.it.

So, I've decided that it isn't me and that my cousin's husband is right - people say they want to help, but when it comes down to it, they won't.

The fight with my sister was the hardest for me. I'm not sure why. We've always had a hot/cold relationship. I think what angered me most was her saying I wasn't working my program. By saying I couldn't manage anymore, I'm not working my program? Whatever.

It's my conscience I have to live with. No one else's.

But a lot of hurt was dished out this week, buy 3 people. Mom, who thought I was going to go against her will on an issue that is very important to her; Sister who basically switched her thinking to my brother's and isn't going to help anymore; Bonnie, by telling me I'm projecting.

Well, I have to project. Being as disabled as I am, I don't have the luxury of letting things sneak up on me. I've got to be able to look ahead at what will be needed and slowly work toward it, so that when it is needed, I am or whatever is ready.

So this week, I've learned that I am indeed alone in this - being a disabled caregiver. I have an older brother and sister, the first is unemployed, the second lives out of town, and I'm all alone in dealing with my worsening dementia father, and lazy, non-compliant, almost in renal failure mother, a house that is 140 years old and in constant need of work and a pile of bills that doesn't shrink, but a DSS check that doesn't keep up.

It's actually a relief. I don't have to deal with my sister texting me about whatever BS TV show she's watching that either her partner doesn't want to watch or isn't home to watch. I don't watch much TV if I can help it. I've got too many other things to do or that I want to do to waste my time in front of the TV.

I don't have to hope that either of them will come to help. They won't. Period. They say that expectations are premeditated resentments. Some things you expect because you're family. But, I'm not expecting anything. You can't lower them any further than nothing.

And with guilt through association, I won't be expecting anything from my aunt either. Her husband isn't well and they are either catching up from being on a trip or preparing to go on a trip, so there's no way she can come over to do anything meaningful around here on a regular basis - which is what I need.

Plus, I don't have to expect anyone to come over to give me a break. That sucks, but since no one ever does anyway, I don't have to hope for it. It's as much a relief that the guy I was seeing doesn't come over anymore. I can get more done around the house.

It's odd how these things that should be added burdens are relieving. Trust me, disappointment is a heavier burden than knowing you have no choice but to be alone in your struggle.

I guess that's enough rambling for 1 night.

Progesterone Induced Anaphylaxis News

2009-02-03T14:02:00.004-05:00

First, two other posts I've written on the subject:
My first Encounter With Progesterone Allergy

More Info About Progesterone Allergy
Please read the comments below each post - you'll see you're not alone!

And since I just got another email from an incredible husband researching to find some answers for his wife, I've done a little more digging...

I've found another term for it:
Catamenial Anaphylaxis is a syndrome of hypersensitivity induced by endogenous progesterone secretion. Patients may exhibit a cyclic pattern of attacks during the premenstrual part of the cycle.
There are several Catamenial syndromes - this being one of them. It may not be just progesterone related, as some women have it occur when the progesterone isn't being secreted. However, that doesn't mean it isn't all related and not part of the problem for one of you out there.

As for the research on Progesterone Induced Allergy (or Anaphylaxis):
A single case in Australia was treated successfully with a COX-2 inhibitor (Vioxx type). Nothing more has been written about it since 2001.

Another individual case in the US was treated with a chemical menopause - which ceased her symptoms untill she had her ovaries removed:

Treatment with an LHRH analog causes the pituitary to become unresponsive to endogenous LHRH, with subsequent reduction in the secretion of follicle secreting hormone (FSH) and leutinizing hormone (LH), which in turn leads to a reduction in estrogen and progesterone secretion. LHRH analog-treated patients cease menstruating and enter a temporary state of menopause. This agent caused a complete cessation of her attacks. After a period of time on an LHRH analog, this patient underwent an oophorectomy with sustained remission of her attacks, which was still present at follow-up five years later.

My thinking
I know my efforts work wonders for me and fully believe additional efforts would work as well.

Benadryl - I take 50 mg a day. Since I have hay fever type allergies, which got worse after my first bout with PIA, I just take it daily. Once in awhile I can decrease the dose to 25 mg, but not often. If I start getting itchy, I also use a benadryl cream. That works wonders.

Zantac - if you do an acid reflux type med, it must be the H2 inhibitor type. Not all are, so do your homework. Zantac is OTC, so is easiest for me.

Methylpred 21-pack. My doc gives me a script to keep at home in case I need it. If the symptoms break through the benadryl and benadryl cream, I just start the methylpred. I know it's going to be a bad episode, so why wait until it's time to go to the ER? It's far cheaper and better on your body to not wait so long for the help, when you can do the same thing at home.

Herbal Therapy

So then I got thinking about other ways women may be exposed to estrogen, phytoestrogen and phytoprogesterone - yes, there is such a thing!

Basically, any of the herbal supplements for women having difficulty with their mensies or getting pregnant or for menopausal symptoms can have the phytoprogesterone in it.

The major players:
Red Clover
Chaste Tree (Agnus Castus)
Wild Yam
Black Cohosh

The Minor arcana
Alfalfa
Apple
Dandelion
Dates
Dong Quai
False Unicorn
Green Beans
Hops
Liquorice
Motherwort
Pomegranates
Sarsaparilla
Saw Palmetto
Willow

I fully believe with girls maturing far earlier than ever in history, as well as the use of chemical birth control being used by more and for longer periods, AND the advent of many that suppress mensies for months at a time, this will be far less common.

So fight with your doc! Keep a journal of when symptoms start, end and how severe along with your menstrual cycle. Then you can prove to him/her that it isn't in your head, it's in your ovaries.

You're not alone!

Another Year, No New Allergy

2008-08-03T23:06:00.002-04:00

Amazing! I can't say I've had any new allergies pop up. I've figured out another one, but nothing new has happened.

AND, I've gotten rid of one by eating far more carefully. The latex allergy is real. But by not eating foods that are sort of co-allergens to latex, I don't have the constant rash in the summer time.

In the summer, I wear jog bras when I work. It's just easier than regular bras. Straps don't fall, cups to move out of place and then STICK to whatever spot they happen to land. Jog bras stay in place and soak up some sweat besides. But, with all of the latex in them, I had a constant rash from them. And my underwear. Talk about maddening!

But, but cutting out the main food - peanut butter - and significantly reducing others such as every fruit except blueberries (practically), melon, some grains and some veggies, I've eliminated the rash! It's been 8 years at least since I've not had the summer rash. It's such a small thing, but truly has made life far less stressful. Constant itching is an amazing distractor.

The new discovery

Wheat is another enemy. I knew oats were - they make my heart race - but only in the morning. Not in the evening. I don't get it, but that's fine. I'll quit eating oatmeal for breakfast. Which I did. I started making pancakes for b-fast. Oat flour was bad, so I cut with wheat flour. Even cut with corn meal, it wasn't good. Started using rye flour. That works.

When I run out of pancakes (I make a big batch that'll last me 3 days), I'll have toast or a bagel. Well, the days I ate the toast or bagels, my asthma would flare. I finally noticed the pattern. It only took 4 months or so.

Which is when I knew I had to just start eating pancakes, period. Rye flour gets old after awhile. So I've branched out. I just tried a new grain called quinoa - keenwah. I think it has proteins in relation to wheat because my asthma really flared up by the end of the 3-day batch. Brown rice flour - nice! I have yet to try the Spelt. I didn't realize it was related to modern wheat and my asthma is still up a bit. I want it back to baseline before I move on to a new flour. I'll continue to try different flours, just so I know what works and what doesn't. If it can help someone else, that's worth the trial and error.

If you do a search on "Athma from Wheat", you'll get a good number of sources. Some call it "Bakers Asthma", but it isn't. If you're not inhaling the flour dust, it isn't bakers. But it is a well known antagonist for asthma.

More evidence against wheat

My sister, who has worse asthma than I, decided to try a "green" kitty litter for her two apartment cats. It is wheat based. Wheat hulls I think. No matter. She went into the worst asthma attack she had in over a decade, and took months to get over. And that was with the litter in the house for not a full day. And only because I just decided to search asthma and wheat, did we connect her severe attack and the litter.

It just shows how carefully you have to watch your environment when you have sensitivities.

I doubt our nation would have these issues if we didn't rely so heavily on so few food stuffs. Corn, wheat, soy, peanuts. Allergies to these things are exploding. Why? They're in everything. Everything!

More on Progesterone Allergy

2008-04-14T21:30:00.006-04:00

I've gotten more than one person emailing me about this possiblity of hormones inducing an allergic response.

I've done a little more research using different words and have come up with some more links. I'm also thinking of a theory to state. Not that it'll be of any use, but you never know....

First, some of the articles I've found:

http://www.onlineallergycenter.com/treatments/hormone_imbalance.htm
While I don't completely agree with some of the observations and theories, the article makes some very good points.

Here's another:
http://www.clinicalmolecularallergy.com/content/2/1/10

And an excerpt:
While many women complain of worsening acne and water retention during their menstrual cycle, there exist a small number in whom the menstrual cycle is associated with a variety of other skin manifestations such as urticaria, eczema, folliculitis, and angioedema. This condition is known as autoimmune progesterone dermatitis (APD) due to the fact that progesterone is most frequently identified as the etiologic agent. In women with irregular menses, the diagnosis may remain elusive for years. We present a case of APD, and review the current literature in regards to clinical features, pathogenesis, diagnosis, and treatment options.

And another:
Current therapeutic modalities often attempt to inhibit the secretion of endogenous (body-made) progesterone by the suppression of ovulation. Table 2 lists some of the pharmacologic strategies used in APD. Oral contraceptives (OCPs) are often tried as initial therapy, but have had limited success, possibly due to the fact that virtually all OCPs have a progesterone component. Conjugated estrogens have also been used in the treatment of APD. These did show improvement in many of the patients, but often required high doses [2,16,22]. However, due to the increased risk of endometrial carcinoma with unopposed conjugated estrogens, this treatment is not commonly used today [39].

2 of the sources that might be of use:

Snyder JL, Krishnaswamy G: Autoimmune progesterone dermatitis and its manifestation as anaphylaxis: a case report and literature review.
Ann Allergy Asthma Immunol 2003, 90:469-77; quiz 477, 571. PubMed Abstract Publisher Full Text
totext()
Return to text
Slater JE, Raphael G, Cutler G. B., Jr., Loriaux DL, Meggs WJ, Kaliner M: Recurrent anaphylaxis in menstruating women: treatment with a luteinizing hormone-releasing hormone agonist--a preliminary report.
Obstet Gynecol 1987, 70:542-546. PubMed Abstract Publisher Full Text
totext()

Another article excerpt that I had to sign on to PubMed to get to:

Alternatively, leukocytes have progesterone receptors, and progesterone, like many other steroid hormones, can affect immune function. Progesterone can potentiate immune responses to other stimuli, so it is possible that progesterone could be a factor in enhancing allergic reactions or skin reactions caused by other substances or conditions. For example, some women with chronic urticaria (hives) experience cyclical exacerbations of their skin condition corresponding with the menstrual cycle, and it is possible that progesterone plays a role in this process.

If this doc's theory is correct, I'm thinking Singulair might be a good treatment. Leukotrienes are produced by leukocytes and are the cause of allergic inflammation throughout the body.
Please note that Singulair is being watched for mood alteration - as in depression and suicide. Since I am already on an antidepressant, I'm avoiding Singulair.

However, since it has been approved for adult allergies (allergic rhinitis, sinusitis, etc.), and not just asthma, it might be worth it to see if your doc will prescribe it for a 3 month trial.

Another note about Singulair - I did take it before I was on the antidepressant. While I did not note a significant improvement while taking it, the rebound of symptoms worsening when I quit taking it was profound. If you take it and decide to stop, please don't stop suddenly. It might not be pretty.

One of the articles I read has a theory about the connection between hormonal birth control (the pill) and this progesterone allergic response. This makes total sense since prior to the recent SLEW of pills on the market, the incidence of this type of allergic response was virtually unheard of. When the pill first came on the market, it was almost completely estrogen and at very high doses. Since then, it has become a mix of hormones, mostly synthetic and at far lower doses.

Women are taking them for longer periods of time - decades versus a few years. My part of the theory takes this one step further. How many women go on the pill, go off, then start having issues? Mine actually started after my second round of birth control that lasted for a whopping 12 month period. Then WHAM - I was in the ER with hives allllll over my body.

I'm willing to bet there's a very link and the med companies will do anything they can to keep this from being found out. The bottom line, not the patient, is what they care about.

I'd like to work with someone who has the time and ability to go into women's chat rooms to ask if any of them have allergic responses on a monthly basis. I'd like to come up with a FAQs file for them, and I'd like to find out exactly how prevelant it is now. I'd like to know if there is a connection between hormonal birth control (and then subset it into the oral, transdermal and intradermal administration).

Anyone game?

A Vascular Surgeons Dream

2008-04-14T21:05:00.002-04:00

That's what Mom's surgeon calls her.

To recap the last few months, Mom has had 4 angioplasties. Actually, 1 ended up being an angioGRAM, which means the docs just looked around. But we got some great pictures!

Our local renal vascular dude couldn't, well, revascularize her kidneys. 1 is dead. DRT - Dead Right There. Her other was about 85% occluded and he couldn't get the catheter into the arteries (she has 2 to that kidney), so couldn't stent. The only option was renal bypass.

Now, when I started this blog, it was covering just ME. It was a pity party. Still is, mostly. But there are so many hidden medical problems that cause morbidity (disability) and mortality (death) that it's coming to me that I need to expand. So - I'm going 1 step out and talking about my mom.

With Mom having 3 very inquisitive children, she soon found out that there were other options besides renal bypass, the odds of success with renal bypass, the frequency with which her condition (renal artery stenosis, or RAS for those in the know) occurs, signs and symptoms of RAS, survival rates after going into renal failure with RAS, and a slew of other odds and ends. I'll write about those later.

What my sister found out is the hospital she works at has a head surgeon who actually advertises his email! Ha! So she had no clue he was the grand poo bah (her words) of surgery when she emailed him. Had she known, she probably wouldn't have, thinking it not appropriate and we wouldn't be where we are today. And where we are - is in the best dream a vascular surgeon could ever have.

He was able to stent her kidney. The first artery - which he thought would be the most difficult - went flawlessly. That stent was placed just like it had always lived there. The second artery was a bit more problematic. It took an hour just to get the catheter placed. But, then went beautifully.

Since then, she has had her right arm (subclavian artery) stented, which means she now has a pulse in that arm again and is scheduled to have her right leg (femoral) done April 24. Her right arm is now warmer than her left, which means she'll probably have to have that one done sometime in the future.

One good note - her carotid artery (the one open one in her neck) is staying at about only 60% occluded which means they won't touch it until at least next year. Since it's been at 60% occlusion for about 5 years, I'm guessing it'll hold its position. We all are since her cardiologist down at my sister's hospital says she can't handle a stent being placed and would need a full endarterectomy. We don't want her sliced open if we can avoid it.

But her right femoral artery is 80% occluded. Which brings me to another post - how pissed I am at her local docs.

For YEARS she has complained about her leg being weak, getting tired quickly, aching and feeling numb. For YEARS they stated it was NOT vascular. Even last year during her open heart surgery, the vascular surgeon stated there was no way it was a vascular condition. And here we are, hoping it can be stented since a bypass would most likely be out of the question.

So, between her RAS being totally missed and BOTCHED, her right leg is in danger as well. Smooth move exlax.

And so this year continues. 3 trips out of town so far, and at least 2 to go.

Her blood pressure is coming down. Before the kidney work, it was holding steady at 180-190 systolic. After the kidney, it was holding steady at 160-170 systolic. Since the arm was stented, it was holding in the 140's, but over the weekend crashed to 90 systolic. We reduced one of her meds by half during the time it crashes to keep it up between 140 and 160. Considering how quickly it has dropped (within a month's time) and her risk for stroke, I am not letting it get that low again. Ischemic stroke due to a shock-like BP - take your BP and then drop it by half within 30 days. See how you feel. Anyway, a stroke due to her BP crashing is not the way things should end.

We take her pressure at least 3 times a day to make sure all is on an even keel.

Slowly, she is feeling better. Each stent brings more relief, more energy and more hope.

For me, it brings no physical relief, but hope things will improve for all of us in this house.

10 months and counting

2008-02-01T20:38:00.000-05:00

Actually, 10 months, but who's counting?

Me. that's who.

Mom is getting sicker. I can actually deal with that. I'm worried as hell, but not knowing is so much worse than having all of the facts.

Her renal arteries are 60% clogged. So, she's got symptoms of kidney failure. She sees a doc Wednesday in hopes of scheduling surgery for stents.

So I'm back to taking care of the entire house. Dizzy. Such is life.

My doc bumped up my anti depressant. It isn't helping yet.

Here's hoping it starts soon.

Christ

2008-01-08T11:17:00.000-05:00

I walked some time away today.

Got thinking.

Christ made the decision to die. It was courageous. It was selfless. It was the supreme sacrifice.

When some of us make the decision to die, it's cowardly, and selfish.

Why is that?

He knew life would not get any better while he lived. So he chose to die.

I know life won't get any better while i live, so i choose to die. Life has gotten worse, not better.

I wonder if anyone has ever given in to the thought that only those brave enough to sacrifice life here in hell are the ones who get into heaven - not those who tarry on just to bitch, complain and make things worse for everyone and everything around them.

To me - the latter is the most selfish. To do nothing to make the world a better place for everyone - to only trudge along in a miserable existence, hoping someone else makes it better for THEM. That's the narcissistic.

Accepting that you can do no more and that it's time to move on - letting go. That isn't the selfish.

Prayer

2008-01-07T18:33:00.000-05:00

Now I lay me down to sleep
I pray the Lord my soul to keep
If I die before I wake
Forgive me for being thankful

No preservation of body
No casket of metal
Pine is all I want
No vault to protect in death which wasn't protected in life

No stone marking my existance
Let me be invisible again to the world as I am to my family

I pray that God forgive me my sins
My wish for death
My plan for death
My need to give my soul the comfort of silence

Comfort me in my terror of hell,
what hell could be worse than inner torture
Of no escape

Darkness, silence, solitude have no pain

So Tired

2008-01-06T22:40:00.000-05:00

I am so tired of it all. Repetative, huh?

Well, I try, and I try. And I keep trying. Keep hoping. Keep thinking tomorrow will be better. And it just so rarely happens that I think I have hope.

I'm tired of being suicidal every year. I know I don't have it so bad compared to other people. I know it's a pity party for the most part. But my brain just isn't set up to understand that and cope with it.

I've had my meds increased - only to have the insurance company refuse to pay. So, it's been dropped back down suddenly. Not fun. Not helping.

But, I was this way last year, the year before and now this year.

I'm ready to be done. It's just not worth it.

I hate being so psychotic.

3 Weeks

2007-12-23T22:50:00.000-05:00

IT's almost Christmas Eve. Joy. I'm still in a very ba-humbug kind of mood.
Vertigo will do that to a person.
Try decorating a 5' tree and being nauseated just trying to get the lights on. So nauseated that no food for the rest of the day would be just fine by you.
And you still have to put the ornaments on.

This is where the story gets a bit comic... Not that I'm in a comic kind of mood. I keep trying, it just doesn't flow right now.

Anyway, we got the tree into the house and in its stand. We set it on an antique sled my great grandfather made to make it look a bit bigger, and to take up less room. So - I water it. I look about a half hour later and it needs more water. Woo! How cool! I water it again. My cat is looking. Then I notice the stream. The stand has sprung a leak.

Great. Just what I need. 1 and 1/2 quarts of sugar water in the rug that I just shampooed a week before. Dad goes to K-Mart for another tree stand while I shampoo that spot and dry it out as quickly as possible so we can put the tree back in position.

Today - I mop the floors with a brand new mop. It left a bloody film on the entire floor - kitchen and diningroom. I get to mop the floor again to get rid of it. Yeah - I need to do every job twice around here. It's what I live for.

And now we have a front racing through that is wreaking havoc with my balance. All I can say is, I'm going to bed. I feel like shit, I have to go out tomorrow and I'm not sure I'm going to feel like it.

50 bucks a week

2007-12-18T23:22:00.000-05:00

12/19 - Life is just getting too comedic.
Vertigo - bad enough.
Then, add having the entire house disrupted getting two new floors in.
Worse. But, not much I can do about it. Meclizine helps a little.
Feel better for about a day between floors.
Have killer allergic "thing" the day after the second floor is put in.
Nasty ass snow storm nails me to the couch the day after that.
Asthma starts kicking up. Get the inhaler and pred pack.
Yeast infection the next day. Well, that's what I get for self-medicating with chocolate. LOL
Period comes right after the discovery of the infection. Life is just too sympathetic.
Turn water on for shower and a water main down the road breaks. Literally - same time.

We never lost power. At least not yet. LOL

So - what else can happen? I'm sure it will and I'll let you know!

Oh - looked online and found out that national average for cleaning is 30/hour. We've got some real gougers around here. I'm going to keep looking. Hopefully will find someone willing.

L

It'll cost $50/cleaning to regain my sanity.

That's to dust the first floor, clean the tub, the toilet and the sink in 1 bathroom.

Cleaning the kitchen sink and counter would be extra.

WOW. I should have gone into cleaning houses. M&D have no clue how much they're saving by having me as a slave. I had no clue how much I was paying in sweat rent.

I'm feeling some better. Allergies are down. Asthma is still up. Hives and itching are still around, but at least they're decreasing substantially. Methylpred is a great drug. So's albuterol. And meclizine. And alka seltzer cold/allergy. And Effexor. LOL

Not much of a chemical cocktail there, huh?

I still have a headache.

I know I want out of this situationg. I just don't know how to get out.

Was able to air the house out quite a bit. That felt good. It gets so stuffy. So close. Too prison like.

Merry Christmas.

6 Months and No Change

2007-12-16T20:30:00.000-05:00

I'm laughing because it's been just about 6 months since I last wrote. I say no change, but the doc bumped my meds up a bit, hoping to help snap me out of my funk.

It helped some. But now winter is here and I'm trapped inside the house with 2 parents who do nothing.

I know I'm ranting. Tough titties.

My sister says to quit enabling my mom. Well, I would stop enabling her couch potato existance if I could survive the transition period.

But my allergies won't allow that.

Snow - well, Dad's knees won't let him shovel much. More than he does, but not by a whole lot. Mom's heart won't let her shovel any. Where I get resentful is when she says she wishes she could help. I keep telling her that helping would be to sweep and vacuum. Oh - well, I didn't mean THAT kind of help. No shit.

House work - I went to my sister's for a week - some laundry had been done. The floor swept, but nothing dusted or vacuumed, kitchen hadn't been wiped up the entire time. Cataracts or no, after awhile, you've got to at least SMELL the food.

Trash - the kitchen garbage isn't 15' from the trash cans. And yet she can't make that walk with something that weighs less than 2#. Smell! Awful! Someone who can smell cinnamon 2 rooms away surely can smell garbage 2' away. Ditto on the fridge.

Bathroom - that is the ONE room that makes me dizzy enough that nothing else gets done in the day if I end up cleaning it. But waiting for Mom means waiting a month. It's the only bathroom in the house. I can almost take it. But again, the smell (thank you Dad), is what gets me.

Allergies - I've got allergies. Dust mites are literally the worst for me. So, keeping it vacuumed, dusted and swept is important to my breathing. If I dust, I'm plugged for the rest of the day. She knows this. And yet, if she dusts monthly, it's a miracle.

We have discussed these issues time and again. I'm not discussing them anymore. Why? It isn't going to change anything.

No living on my own. No escape.

I haven't even had a chance to work with the long-arm quilter I worked SO hard over the summer to get brought in. It's been MONTHS. But because of my normal autumnal vertigo, Mom deciding she needed new flooring put in NOW v. any time my vertigo isn't as bad, or I could get outside while saws and such are running. That's kicked the V up 5 fold, easy.

It's about 845PM and I'm ready for bed. It's that bad.

No reading, little writing, no sewing, no thinking. Virtually no talking. I can't. Speech is slurred, english is not understood. Facial nerve is all sorts of pissed off. Brain death. Critical thinking - nope.

Between the noise, the furniture moved, the smell, the fumes and now the weather, I'll be lucky to feel human by mid January.

I think I'll go cry now.

Sick of it ALL

2007-06-17T16:25:00.000-04:00

I am so sick of life. My life actually. I'm sure I'd be happy with someone elses at this point.

I hate crying because it just makes the vertigo worse. But here I am, crying.

And it all started with a simple phone call. My ass of a brother.

Calls to say Happy Father's Day - which makes him golden even though he forgot last year. Dad's all aflutter over it and David bought a big umbrella for the fish pond.

It's a water feature, not a pond. It has 4 gold fish in it, 4 plants - 3 of which I bought, and so much algae it's irridescent. I said I'd keep trying to get the water clear without hurting the fish until July 1 and then all bets are off. Well, I'm not trying anymore. I've told Dad at least a dozen times we needed more plants to cover the surface of thw ater 50-70%. Well, that'll interfere with his fish watching. But, so does the algae so I'm not sure what the problem is.

So, all we - meaning *I* - will have to do is sink a pipe in the ground to put this big umbrella in and it'll shade the pond. What is it about guys dying to be trailer trash? Never mind that there's a flower bed around it that could look good if it didn't have a big umbrella in the middle of it.

And then there's the quilt shop. Mom bought a prefab shed and is buying a long-arm quilter. I'm doing everything in my power to keep that fucking thing as simple and as inexpensive - both now and when in operation - as I possibly can. I have been dizzier this past week than I have been in a YEAR.

My brother waltzes into the picture and professes an oil stove to be the best heating option for out there. Mom just waits with baited breath for his pearls of wisdom. Never mind I've done all the research and am thinking a pellet stove will be far easier AND cleaner to use. David wants to buy a used oil furnace from a mobile home. Oh - I am just tickled senseless over that notion. That alone is a deal breaker. I will not do anymore work on it, I will not work IN it. I will not clean up the oily film left from it, I will not clean up oil spills everytime the asswipes come to fill the tank.

and then there's friends. 1 friend has stopped coming over all together - just can't find the time.
another friend's visits are slowing down considerably - work ya know.
and the other friend just stopped by for the second time in a year. Woo.

I can't get out. I can't drive. I can't do public places with all the noise, movement, people and unfamiliarity.

I'm sick of it. I'm tired of trying to remember all of the things Mom starts, but forgets to finish. I'm tired of trying to remember what to reminder her of, and hope she doesn't get pissed because I'm reminding her. I'm tired of reminding Dad all the time, knowing he'll probably forget. I'm tired of trying to keep the things I *want* to do going while trying to get the things I should or even have to do done AND keep the house clean.

I'm tired of being responsible for 2 other adults when I can barely be responsible for myself. I'm tired of not stepping on toes and trying to make things so Mom doesn't keep saying, "I'm sick of it".

All of the flower beds - she's sick of them. I've spread those flowers everywhere and she's sick of it. That's not the surgery talking either. She said it last year too.

Well tough shit! I like them and they beat mowing! Don't fuckin' look at them if you're so sick of them! It's not like you set foot outdoors anyway!

And she hates rehab. That makes me so angry. I'd give just about anything to be able to go work out for an hour and still have the ability to drive to a store, get groceries and come home alive and not puking.

I can't escape. I hate that.

Latex Allergy Shows Up Late

2007-06-07T07:31:00.000-04:00

Well, I'm having a fine and dandy spring. I won't go into details right now because I just keep shaking my head about it.

BUT - have, by process of elimination, found I am becoming more and more allergic to latex.

Wanna know HOW I figured this out- that's the long part of the story, but unprotected elastic has been making me break out BIG time. Just figured that out. I have 2 socks wrapped around my waist under my undies right now. Sub undies. Crap - only me.

Here's what I just found out about co-allergies to latex:

Guess what are co-allergies to latex/rubber?

"avocados, bananas, kiwifruit, papaya or peaches" - all have same or similar proteins to latex.

Now, I've noticed bananas lately - really making my mouth sore, and obviously if I eat too many peaches, and definitely kiwi.

http://dmd.nihs.go.jp/latex/cross-e.html

food allergies ranging from itching and pruritus around the oral cavity (oral allergy syndrome: OAS) to generalized urticaria and even anaphylaxis.

List of the Suspected Vegetables
"banana, avocado, potato (sort of. I just don't cook them for myself, but eat them if someone else makes them), tomato, kiwi, chestnut, walnut, passion fruit, pear, grapefruit, mushroom, bell pepper, mango, pineapple, celery, cantaloupe, apple, papaya, almond, buckwheat, fig, lettuce, peach, orange, peanut (have needed to elimate, just haven't), strawberry, pepper, mustard, watermelon, bamboo shoot, carrot, coconut, apricot, loquat, peppermint, soybean, cherry, nectarine...

OK - the highlighted ones are mine - the ones I have stopped eating just because they do something non-allergically adverse to me - or so I thought. That's just a little too freaky for me.

So - as of today, I'll eliminate most of these starting today to see if things settle down.

I am no happy. Are most of these nightshade plants?

Crap. Am on methyl pred right now and it's helping. You have no idea how distracting ITCHING is until it happens to you and you can't get away from it.

AND - read the section on food allergies - they're starting to classify them better so it isn't just anaphylaxis.

1040PM
It seems like every year something new happens with my health. And it's rarely, if ever, good.
I've always been confident about living until 100. My childhood wasn't very healthful, tonsils were the culprit. So I figured I was certain to have a great adulthood.

So now I have the vertigo. I don't think anyone, doctors, patients, researchers, etc., have a clue to how much stress this constant imbalance, dizziness, cognitive dysfunction, vertigo attacks and everything else that goes with it puts on a body. I feel like I'm aging 2 years for every 1.

And every year, a new allergy. I keep trying to minimize them, but every once in awhile, I just can't. I see life in a more realistic perspective. I'm not going to live until I'm 100. I'll be lucky to make it to 70. How am I supposed to live life to the fullest, knowing how few years I have left if it's life itself making it so I can't?

Having grown up in the true American spirit of fairy tales and living happily ever after, I know that at age 41, disabled, increasing medical problems and virtually no way to socialize, I'm NOT going to find someone to call a life partner/husband/significant other. Considering the last one dumped me because of my allergies and then the vertigo, how in hell can I expect someone to accept me this way? I've seen it too many times that the woman is dumped when she gets sick. But by God she better stick around if the guy has something happen.

If, when I die, I find out there's no heaven, no 'reason' for this life other than to pass oxygen and carbon around, I will find a way to haunt every clergy person of every faith on the planet until they go insane for lying through their teeth at us sheep, saying there's a reason we are alive.

Ya think I'm tired?
Niters

Global Warming Theory

2007-06-03T19:16:00.001-04:00

Short and sweet...

Combustion engines are the least efficient energy source know. This included all mammal bodies. Their primary byproduct isn't gases, but heat.

And while mammal bodies are the most efficient of all combustion engines, it's still only in the 30% range, with human bodies giving off just a bit more heat than a 100 watt incadescent bulb.

So - forgetting green house gases, look at every combustion engine on Earth today. Record numbers of human bodies, record numbers of new manufactured combustion engines on an annual basis in both developed and developing nations (US and China respectively).

Could global warming be very simply attributed to the heat given off by all of these combustion engines?

It would be interesting to figure it out. I just don't feel like it.

Disappearing

2007-04-29T19:10:00.000-04:00

I feel as if I and my entire identity is disappearing. Everyone else can leave, but I can't. I can't escape this latest ring of hell I'm in.

What did I do in a previous life and how do I make it right so I don't go through this shit again next time?!

Good news - both cats tested negative to feline leukemia. I've basically decided there's no catching "Black Guy", so will never know about him.
Not so good news - Jaspurr (aka J-man, The Great Jaspurry, Punkin Puss, Red Head, Agent Orange, Monster Mash, Gargantua) has asthma. Probably from his skunking episode 2 summers ago. He got nailed in the face by a direct hit and just hasn't been the same since. So - will have to keep watching him for asthma attacks.

More not so good news. Mom has become non-compliant again. No walking, no drinking, barely eating and not taking her meds in a timely manner.

Things have stalled on the quilt shop. She's lost interest and if that's the case, I'm sunk. LOL - there's no way for me to do that on my own.

Bad news - the garden house needs to be replaced. Most of the rafters are rotted, so I knew I'd need to replace it, but have been hoping for next year. That's a pipe dream. It has to be replaced this year. The roof is leaking massively and with the rafters rotted, there is no way to get up there and have it support whomever trying to repair the roof. Sides have been rotting as well, but have tried to ignore that. LOL

Good news - am trying to keep enough energy to quilt - give me some sanity outlet. Am working on a seaside quilt for my brother's niece. He commissioned me to make it 3 years ago for her college graduation, which is in a month. He finally OK'd the design and such, so am getting to work on it.

But I'm still not able to read 1/10 of what I was a month ago. Can't really understand English when it's spoken to me, and am having a hard time speaking it again.

I woke up killer dizzy from my nap and just want to go back to sleep. Not for another 3 hours.

Lost Wax Method of Life

2007-04-26T21:14:00.000-04:00

Goes hand in hand with Meltdown.

Well, life continues to be a series of adventures.

Good news, Mom is doing much better.

Bad news, one of my cats tested + for feline leukemia.

This means I get to have 2 others tested, and if I can catch the third, him tested as well.

Which means I take them all down by myself, which means driving. Which means vertigo.

I got one out of the way today - Mini. She's a doll. Little, pudgy, bowling ball of a doll. But she's negative, so that's good. She's Mom's cat, so I was very worried about the results. Next is Jaspurr on Saturday. He's mine. Then Black Guy - who started this whole thing.

He's got a bum paw and doesn't put weight on it. I put the have a heart trap out and of course I got my other wild child, Cicero in it. He's pictured in http://invisibledisability.blogspot.com/2006/08/wild-child.html from last summer. Sweetest kiddo around. But, he had a warm, safe place to sleep this winter, ate better than most humans and hadn't gotten sick yet when he tested +. So, not a bad way to go I suppose. Better than getting hit, or attacked or caught in a trap and starve, in a fight and die of infection, etc.

So, I have Mom to deal with being intermittently uncooperative regarding her recovery efforts from her surgery. I have the cats to get tested, vaccinated (normal time for it), put down or surgery as the moment requires. Already having Mini going in next Friday for dental work. She has death breath, so I knew this was coming. Have been saving up for it.

Have normal spring clean-up and crap to do. Have the house to take care of. And now have my brother to contend with on a building Mom and I are putting up for a quilting business.

I barely have the eye power to do the research I need, and to now have him pulling out of the work he agreed to do - which is to grade the spot the building is going in and nothing more - is more than my brain can do.

I tried to do my research tonight and it just isn't going to happen. I'm too dizzy. Between taking Mini to the vet and then having to mow - didn't even finish - and cook and clean and do a load of laundry, I'm toast. I want to go to bed and it's 930.

Oh well. Life goes on. I'll figure it out tomorrow.

Meltdown

2007-04-22T09:19:00.000-04:00

Well, it finally happened. I finally had a total meltdown. It only took about 3 weeks to happen.

I've been good with everything that's happened with Mom until 2 days ago.

I overdid the day before by going to the bank and the drugstore - both within a 2 mile radius of the house and then went down to Mom's church - less than a half mile away. That much driving did me in the next day.

How sad is that?!

So, it was then I realized I can't do this. I can, I just think I can't. LOL Make sense?

My limits are so extreme that it just astounds me. All I wanted to was to get away for just a few minutes, all by myself for a change - and I crashed the next day.

And because of the disability, I have everything very carefully scheduled. If I crash one day, it puts the whole schedule in jeapordy. If I get behind on the schedule, things don't get done. And with me being the only one doing them, I can't get behind.

I took yesterday and played outside while doing laundry. Thank GOD for washing machines! It allowed me to get outside where I really feel alive and NORMAL while still staying on schedule.

I have to cook and do some cleaning today, then maybe deal with my brother and his wife this afternoon. I hope he keeps his promise to not bring his dog anymore. I have an injured cat that the dog would be able to catch with no effort. And yes, the dog is a cat-killer. We have 2 indoor and 2 outdoor cats.

Dealing with Dad. Oy. I try to let him do his own thing since the dementia is at a point where adding anything can totally screw him up. But he does have to empty the dishwasher and go to the store once in a while. I really wish "awhile" would become accepted in the English language rather than "a while". Hell, he's pissed as a hornet that he has to change his underwear more than twice a week because I wrote it on his calendar. I'm still feeling the affects of that edict. Oh well. Shower AND change underwear? I am SO cruel.

I also have to rearrange the freezer upstairs so we can have meals to thaw and eat rather than in the big freezer down cellar. You have to understand the fridge freezer is sort of a black hole. You so don't want to start rummaging around in it. But, it needs to be done. So will probably be done today. On the second warm, sunny day of the season. Yeah - just what I want to do. LOL

Oh well. The rules of life have changed.

L

More Theories on Bees

2007-04-22T09:15:00.000-04:00

5/9 Letter To The Editor I Submitted Re: Article Below

Cell phones. Pagers. WiFi. Remote controls. Garage door openers. Portable phones. The list of items using frequencies that “didn’t exist” 40 years ago expands daily. Just because we hadn’t used them doesn’t mean they weren’t being used.

German scientists have found a causal link between Colony Collapse Disorder and wireless usage (http://news.independent.co.uk/environment/wildlife/article2449968.ece). Could it be our latest scientific advances are driving honeybees insane, deaf and blind? It is a distinct possibility.

Noise pollution could, quite possibly, be what is killing this link in the food chain. It is our “canary in the coal mine”.

The silence is deafening.

Sincerely,

Are mobile phones wiping out our bees?
Scientists claim radiation from handsets are to blame for mysterious 'colony collapse' of bees
By Geoffrey Lean and Harriet Shawcross
Published: 15 April 2007
It seems like the plot of a particularly far-fetched horror film. But some scientists suggest that our love of the mobile phone could cause massive food shortages, as the world's harvests fail.

They are putting forward the theory that radiation given off by mobile phones and other hi-tech gadgets is a possible answer to one of the more bizarre mysteries ever to happen in the natural world - the abrupt disappearance of the bees that pollinate crops. Late last week, some bee-keepers claimed that the phenomenon - which started in the US, then spread to continental Europe - was beginning to hit Britain as well.

The theory is that radiation from mobile phones interferes with bees' navigation systems, preventing the famously homeloving species from finding their way back to their hives. Improbable as it may seem, there is now evidence to back this up.

Colony Collapse Disorder (CCD) occurs when a hive's inhabitants suddenly disappear, leaving only queens, eggs and a few immature workers, like so many apian Mary Celestes. The vanished bees are never found, but thought to die singly far from home. The parasites, wildlife and other bees that normally raid the honey and pollen left behind when a colony dies, refuse to go anywhere near the abandoned hives.

The alarm was first sounded last autumn, but has now hit half of all American states. The West Coast is thought to have lost 60 per cent of its commercial bee population, with 70 per cent missing on the East Coast.

CCD has since spread to Germany, Switzerland, Spain, Portugal, Italy and Greece. And last week John Chapple, one of London's biggest bee-keepers, announced that 23 of his 40 hives have been abruptly abandoned.

Other apiarists have recorded losses in Scotland, Wales and north-west England, but the Department of the Environment, Food and Rural Affairs insisted: "There is absolutely no evidence of CCD in the UK."

The implications of the spread are alarming. Most of the world's crops depend on pollination by bees. Albert Einstein once said that if the bees disappeared, "man would have only four years of life left".

No one knows why it is happening. Theories involving mites, pesticides, global warming and GM crops have been proposed, but all have drawbacks.

German research has long shown that bees' behaviour changes near power lines.

Now a limited study at Landau University has found that bees refuse to return to their hives when mobile phones are placed nearby. Dr Jochen Kuhn, who carried it out, said this could provide a "hint" to a possible cause.

Dr George Carlo, who headed a massive study by the US government and mobile phone industry of hazards from mobiles in the Nineties, said: "I am convinced the possibility is real."

The case against handsets

Evidence of dangers to people from mobile phones is increasing. But proof is still lacking, largely because many of the biggest perils, such as cancer, take decades to show up.

Most research on cancer has so far proved inconclusive. But an official Finnish study found that people who used the phones for more than 10 years were 40 per cent more likely to get a brain tumour on the same side as they held the handset.

Equally alarming, blue-chip Swedish research revealed that radiation from mobile phones killed off brain cells, suggesting that today's teenagers could go senile in the prime of their lives.

Studies in India and the US have raised the possibility that men who use mobile phones heavily have reduced sperm counts. And, more prosaically, doctors have identified the condition of "text thumb", a form of RSI from constant texting.

Professor Sir William Stewart, who has headed two official inquiries, warned that children under eight should not use mobiles and made a series of safety recommendations, largely ignored by ministers.

Twists and Turns for The Dizzy

2007-04-17T22:07:00.000-04:00

Well, I'll try to keep this on point and at least a little focused.

Mom had her surgery. It went well, but not as planned.

They couldn't replace the valve because her aorta is too calcified. The surgeon flipped because Mom had NO signs or symptoms to indicate she was in this bad of shape. The catheterization could have killed her. But it didn't. And she came through the surgery just fine.

She's pinker than I've seen her in over a year, but she's very depressed. Life defined in singular years must be pretty hard to swallow, so I'm not arguing.

I have to research hospitals in hopes of finding another technique that might be used on her. My bro, while GREAT during the initial part of this has slacked off severely, only researching to discount my ideas. I don't get that. But I guess I don't have to.

My sister leaves tomorrow, leaving me to deal with it alone all day long.

The latest storm nailed my ass hard - leaving me dizzier than a dirvish for 4 days now. I'm trying to do some exercises that will bring me back up, but I'm not sure how well it'll work. I'm always behind right now on the learning curve and it'll take me at least 4 more weeks to start feeling 'normal' again.

My aunt will be a Godsend. She's doing errands for me and is willing to do just about anything I ask as I need it. She'll practically live here soon! And that isn't necessarily a good thing. [big smile]

We get along, but it would truly strain our relationship. Mother v. Sister in relationship - I can see huge butting of heads if we don't dance very carefully.

so - that's where I am right now.

To all those at Va Tech - my prayers are with you and your families. It's beyond comprehension how 1 man's torment turns into a community's tragedy. I am so sorry.

Life With A Twist, On The Rocks Please

2007-04-05T22:23:00.000-04:00

Well, my life has become far more interesting.

2AM 4/3, my mom had a heart attack. A very mild one, mind you, but a heart attack just the same.

Her lungs filled up, she fought the medics like a wild cat, and finally got enough oxygen that she didn't have to fight for her life by 6AM.

12 hours later, the blood work and EKG finally showed she had one.

After finally getting her O2 sats up in the 90's on oxygen, they sent her for a heart cath. That showed her aortic valve and 1 coronary artery needed massive repairs. Replace the valve, bypass the artery and all will be well. But since the valve means cracking her chest, they're goign to do both at once, this Tuesday.

So, during this time, I'm "the woman of the house". She's sleeping a lot - which I would expect fully. She has 2 new docs who, along with the family doc, have changed her meds alllll around, and so her body needs to adjust yet again.

AND get off cigarettes.

I've abandoned my work for hurricane recovery. I can't do it all. Life is all about choices, and so hear it is. It's changed, I have to change.

It's making me twirl like a dirvish, but hopefully it'll settle down soon. The house is mostly in order. She's mostly stable and needs little supervision. The phone has mostly stopped ringing.

Like all of those mostly's?

So - It has become very interesting and will become more so starting Tuesday when she gets her chest cracked.

GM Plants Destroying Bees?

2007-03-23T13:13:00.000-04:00

Excerpt:
As far back as 2005, Haefeker ended an article he contributed to the journal Der Kritischer Agrarbericht (Critical Agricultural Report) with an Albert Einstein quote: "If the bee disappeared off the surface of the globe then man would only have four years of life left. No more bees, no more pollination, no more plants, no more animals, no more man."

Mysterious events in recent months have suddenly made Einstein's apocalyptic vision seem all the more topical. For unknown reasons, bee populations throughout Germany are disappearing -- something that is so far only harming beekeepers. But the situation is different in the United States, where bees are dying in such dramatic numbers that the economic consequences could soon be dire. No one knows what is causing the bees to perish, but some experts believe that the large-scale use of genetically modified plants in the US could be a factor.

and

But that could soon change. Since last November, the US has seen a decline in bee populations so dramatic that it eclipses all previous incidences of mass mortality. Beekeepers on the east coast of the United States complain that they have lost more than 70 percent of their stock since late last year, while the west coast has seen a decline of up to 60 percent.

Pet Food Recall

2007-03-23T09:56:00.000-04:00

You know, I have a penchant for conspiracy theories. I laugh about them usually because they usually are very far-fetched. Such is the life of someone who has way too much time to just sit and think.
Don't worry, I'm not buying Catcher in the Rye compulsively just yet.
But, here's my theory on the pet food thing:

Monsanto - maker of Round Up. They have an incredible lobby and also own several seed companies. They have genetically engineered many grains to withstand Round-Up's toxic nature so farmers can use their product. They've also lobbied so that farmers can NOT save grain from the previous year to sow the next year - hence, needing to buy the latest and greatest GE seed.

Countries world-wide are refusing this grain, due to its untested nature. Who can blame them? Fish genes in grain just doesn't sound like a good idea. Even African nations with populations starving to death refuse this grain. And yet, we keep growing it.

Well, knowing the public isn't too keen on the idea of GE foods, what ever will we do with all of this grain we have stored? I know! Put it in Pet Food! We'll have a captive market since we can sell it dirt cheap (and farmers get subsidies for growing it and then selling sub market prices) to a completely unregulated industry that grosses billions per year. After 5 or 10 years, we can say, "hey, it's been in pet food for 5/10 years with absolutely no ill effects. Therefore, it's safe for humans to eat."

Only, our pets have become the canary in the coal mine. They're dying en masse because of a new strain that might grow spectacularly with Round Up on it, but isn't compatible with any other life form.

And because pets are considered property, there's no huge risk of lawsuits that would put anybody out of business. Monsanto is safe, Menu foods is safe. Iams, Eukanuba, and a host of others are safe.

Who wants to research the true owners of the Menu company? I'll put money on it being a back door subsidiary of Monsanto.

Progress - I think

2007-03-18T17:39:00.000-04:00

I survived the St Patrick's Day Storm of '07. Then we got another 6" in lake effect snow - all powder. Gorgeous!
Well, I went out to take the crows some old bread we had and found this:

It's the wing print of a crow taking off, right by the foot path he made walking around looking for food. THIS is why I loved going hiking in the winter - to find things like this.
It came to me this year. Very peaceful.

This is the chair in our back yard that I put together last year. I've been waiting for a decent day to take its picture during the snow. In MARCH, it finally happens! LOL

Photos

2007-02-28T10:34:00.000-05:00

Prophecy

2007-01-10T22:41:00.000-05:00

The Second Coming
Turning and turning in the widening gyre
The falcon cannot hear the falconer;
Things fall apart; the centre cannot hold;
Mere anarchy is loosed upon the world,
The blood-dimmed tide is loosed, and everywhere
The ceremony of innocence is drowned;
The best lack all conviction, while the worst
Are full of passionate intensity.
Surely some revelation is at hand;
Surely the Second Coming is at hand.
The Second Coming!
Hardly are those words out
When a vast image out of Spritus Mundi
Troubles my sight: somewhere in the sands of the desert
A shape with lion body and the head of a man,
A gaze blank and pitiless as the sun,
Is moving its slow thighs, while all about it
Reel shadows of the indignant desert birds.
The darkness drops again; but now I know
That twenty centuries of stony sleep
were vexed to nightmare by a rocking cradle,
And what rough beast, its hour come round at last,
Slouches towards Bethlehem to be born?

W.B. Yeats
1920

Weary

2006-12-26T18:48:00.000-05:00

Last night I realized how weary I am. Weary of life.

For so long I've dealt with health issues. And while I'm not dying or letting it slow me down, I get weary of the fight. The fight to get beyond the health problems.

I asked how long do I have to deal with this. This fight. A little while longer. Well, I want to know what a little while is really. My little while or God's little while? I suspect there's a large difference between the 2.

It just makes me feel so undeserving. Like, who - WHO - would want to be with someone with continuing health problems? I've been dumped twice because of my problems, and know so many others who have been as well. I also don't know of one who's found another understanding enough to accept them as they are and stick by them AFTER meeting them.

I'm weary.

Christmas Family

2006-12-26T09:19:00.000-05:00

Well, Hell Week is almost over.

It's actually been 8 days, so it might become Hell Fortnight. We'll see how the rest of this week goes.

I had to deal with my sister in law prattling on incessantly about her business she's going to start up. It's a long story I don't want to talk about righ tnow.

Then there's my brother trying to take credit for our collective gift to our parents. I corrected them on it almost immediately. Well, yeah, but. No - no yeah buts. Everything following but is bull shit. Remember that.

He wasn't even on board with it until a couple of weeks ago. Sorry Charlie, when you say M&D like living without and leave them be, I have a hard time with you trying to take credit for the gift of improving their lives. Asshole.

My eye is mucked up again. Huge honkin' floater that has that wonderful spider appearance and never goes away. It's a full 5% of my visual field.

Killer dizzy after having my brother over. Joy to the world. Hoping it goes away, but you never know.

He and his wife are sucha drain. And I know he made everyone else uncomfortable with absolutely no gift to me. Hell, even I gave them a card.

Very soon I'll be suggesting strongly that I'm left out of the festivities when he's involved. He just isn't worth my time or dizziness.

Blow Out

2006-10-10T23:05:00.000-04:00

Well, I've definitely found out a few truths in my life. This house is too small for the 3 of us. I've been having incredible difficulty with everyone bumping into me, getting into my space, making me move unexpectedly.

I don't know when this started, or if it's always been this way. But it isn't working for me right now. And there's nothing I can do about it.

Last week I had a major blow out. I was mowing, opened the radio shack/shed to find standing water in it with water marks 3" up the furniture. The more I mowed, the angrier I got. I'm mad that I'm here and had to find it. I'm mad at myself because I feel responsible when I live with 2 other adults. I'm mad at my brother for pushing so hard to have M&D get this damn thing. I'm mad at Mom for thinking it was a great idea. I'm mad at Dad for the same reason. I'm mad because I've been telling them all summer long there was a water problem and they didn't do anything. I'm mad at Mom because she's playing the victim. I'm mad at Dad because he's playing the martyr - and yes there's a difference between victim and martyr. Subtle, but there. I'm mad because I can't do anything about any of that.

I got so angry that I'm still recovering. I'm still highly irritable. I'm still tired. Still dizzy.

I recognized that I had to let go of the whole thing that day, but am still paying for it. But - it's not my building and it's not my stuff.

But I'd like a chance for it to be my stuff. It was all wooden antiques that belonged to my grandparents. I've always loved that bedroom suite - and it's ruined. There's a really long story that goes with it besides - baggage - but it's ruined now. My sister always loved the diningroom set. Well, the chairs are toast. I'll try if I ever feel up to it, but I doubt they can be restored.

I'm heartbroken that the stuff is going to end up as pretty firewood when it didn't have to be.

I'd really like to know what Karma I'm dealing with right now.

So here I am, still trying to figure out a way to make that stupid shack work. I started a conversation about it with Dad. He took it personally, so we ended up snarling at each other with him buying roofing sealer to smear over the entire shack. If I hadn't donated the feather pillows, we could have some fun, but since I did, I'd rather not have a sticky black cube sitting behind the garage waiting for the nearby maple to start really shedding leaves. Just not what I think of as attractive or functional.

So I hid the sealant. When in Rome, learn Passive Agressive behavior.

So, back in rage hangover mode. Not a pretty place to be. Not as bad as last time, but still not a great place to be.

Am going to try to talk to Mom about warning me when she wants me to move rather than just charging me. Wish me luck.

Pissed

2006-10-05T11:37:00.000-04:00

Sister, you need to come get me. Mom and Dad are pissing me off.

I definitely do better in a brighter atmosphere. This house is dark, and Dad decided he didn't like the halogen lamp that bright so he broke the bulb. You have GOT to love passive aggressive behavior. Trumping that is his dementia. So you always wonder if it's on purpose or accident. But the halogen lamp was definitely on purpose.

On bright spot - pun intended - is the antique brass lamp with original glass needs to be put out of service because the one piece of glass has a crack traveling. Any breaks will make the glass fall out and ruin the lamp both from a family perspective and a value perspective.

So, that damn yellow light will be gone! Life doesn't always suck. I'll be replacing it with an Ott light - true color flourescent lamp. Darn. LOL

But this house, with all the small rooms and twists and turns is killing my vertigo. I felt better at my sister's than I do here.

And this AM, a friend stopped for coffee. Not a problem. He's a great old guy. But all of a sudden, I'm in the kitchen and so is everyone else. Not only that, right up near me so I can't move without bumping into someone. That just makes me spin out of control - so much so it usually creates an instant rage reaction. I was ready to body slam them all. I finally asked if anyone else could step into the kitchen because I still had some room to move. They got the hint.

It's not like I just had this vertigo hit. It's been 5 years. I try to be alone in a room for a reason. Which is WHY I don't COOK! I can't have even 2 minute alone in that fucking room, much less the hour it would take to make a meal the way *I* like. I get too dizzy trying to work around everyone and so I just don't bother. Mom gets pissed because she's the only one cooking - well too fucking bad. You can't keep your fat ass out of the kitchen long enough for me to do something, you don't get any time off from it. Period.

Time to go outside and mow. Get rid of some of this rage. Then shower. Then nap. LOL It works every time.

L

Parable Of The Week

2006-10-03T11:20:00.000-04:00

From a friend who also has vertigo:

Just up the road from my home is a field with two horses in it. From a distance, each looks like every other horse. But if you stop your car or are walking by, you will notice something quite amazing. Looking into the eyes of one horse will disclose that he is blind. His owner has chosen not to have him put down, but has made a good home for him. This alone is amazing.
If nearby and listening, you will hear the sound of a bell. Looking around for the source of the sound, you will see that it comes from the smaller horse in the field. Attached to her halter is a small bell. It lets her blind friend know where she is, so he can follow her. As you stand and watch these two friends, you'll see how she is always checking on him, and that he will listen for her bell and then slowly walk to where she is, trusting that she will not lead him astray.
When she returns to the shelter of the barn each evening, she stops occasionally and looks back, making sure her friend isn't too far behind to hear the bell.
Like the owners of these two horses, God does not throw us away just because we are not perfect or because we have problems or challenges. He watches over us and even brings others into our lives to help us when we are in need. Sometimes we are the blind horse being guided by the little ringing bellof those whom God places in our lives. Other times we are the guide horse, helping others see.
Please listen for my bell and I'll listen for yours. Good friends are like this . . . You don't always see them, but you know they are always there.
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."

Free Education

2006-09-27T10:50:00.000-04:00

http://www.lifehacker.com/software/education/technophilia-get-a-free-college-education-online-201979.php

Not headed back to school this fall? You could be, minus the exorbitant tuition and without even leaving your chair. The web has made it easier than ever before to get a free education, and you'd join the ranks of great thinkers in history who were also self-taught, like Joseph Conrad, Albert Einstein, Alexander Graham Bell, Paul Allen, Agatha Christie and Ernest Hemingway. You, too, can be an autodidact; the breadth of free educational materials available online is absolutely astonishing.

An Answer To 1 Question

2006-09-26T23:52:00.000-04:00

Every 5 weeks, almost to the day, I got "anaphylactoid" symptoms. What WILL the medical community think up next for terminology?!

My doc thinks I'm crazy, but the first one brought about an ER visit. No airway involvement, but my body was pretty swollen and ITCHING. Ever since, I've had varying degrees of symptoms, but never that severe.

Well, I started itching tonight. I've become used to it. My sister was looking at me, so I went and took my starter dose of benadryl and zantac. Sounds stupid, but stomach acid is triggered by a hystamine receptor. H2 to be precise. Allergies are H1 receptors. So - both get a kick in the pants when allergies rear their ugly heads. Knock both down with the appropriate meds and life is much better.

Well, I decided to look around. After a couple of different wordings, I came up with one that worked and found this:

Summary Statements
Unexplained episodes of anaphylaxis may be caused by unusual reactivity to progesterone. Anaphylactic symptoms tend to be premenstrual but may occur anytime during the menstrual cycle. [this part makes sense for me because I'm perimenopausal.] In one report, lactation caused complete remission of symptoms. The pathogenesis of this disorder is unknown, but laboratory studies have shown that progesterone may either induce histamine release from basophils directly or make mast cells more susceptible to other mast cell degranulators. Treatment options include a leutinizing hormone-releasing hormone (LHRH) agonist analog (e.g., Naferelin) or oophorectomy in particularly resistant cases.
A differential consideration that may be confused with progesterone-induced anaphylaxis is catemenial anaphylaxis, which is not related to progesterone reactivity. Anaphylactic symptoms occur during menses, and full recovery after oophorectomy has been reported.
Among the causes of recurrent anaphylaxis in females is an uncommon syndrome caused by hyperreactivity to progesterone. It should be suspected in any female who is menstruating or pregnant and experiencing unexplained recurrent episodes of anaphylaxis. Although the anaphylactic episode tends to be premenstrual, it may occur anytime during the menstrual cycle.
This syndrome was first recognized in the evaluation of a patient who had unexplained recurrent anaphylaxis with total remission during lactation.
1 When the patient became pregnant, the frequency and severity of the attacks became worse. After delivery and the institution of breast feeding, she had complete cessation of the attacks. When lactation stopped and her menstrual cycle resumed, this patient had a recurrence of severe anaphylaxis, including laryngeal edema.
As part of her subsequent evaluation, she was provoked with both progesterone and luteinizing hormone-releasing hormone (LHRH), both of which induced anaphylactic events. Progesterone was suspected as the inciting agent because provocation with follicle-secreting hormone (FSH), LH, and estrogen were uneventful. She was treated with a long-acting analog of LHRH, which competes with LHRH at a receptor level in the pituitary gland. Treatment with an LHRH analog causes the pituitary gland to become unresponsive to endogenous LHRH, with subsequent reduction in the secretion of FSH and (LH), which in turn leads to a reduction in estrogen and progesterone secretion. LHRH analog-treated patients cease menstruating and enter a temporary state of menopause. This agent caused a complete cessation of her attacks. After a period of time on an LHRH analog, this patient underwent an oophorectomy with sustained remission of her attacks, which was still the case at follow-up 5 years later.
To determine if other women with unexplained recurrent anaphylaxis might have progesterone-induced anaphylaxis, four women experiencing recurrent anaphylaxis were recruited into a 4-month, double-blind, placebo-controlled cross-over study of the effects of LHRH analog on their anaphylaxis.
2 All four women thought that their attacks occurred more frequently during the premenstrual portion of their menstrual cycle and that the attacks during these times were more severe. In preliminary screening of the patients, two of the women experienced systemic reactions after challenge with methylprogesterone and LHRH. Only one of the patients who experienced anaphylaxis after provocation had a positive skin test response to progesterone. These two women improved during treatment with an LHRH analog, whereas the other two women did not. Urinary histamine levels, which had been elevated before treatment, were reduced in the two responsive women but not in the unresponsive women. Both women who responded subsequently had an oophorectomy with complete remission of anaphylaxis.
Patients with idiopathic anaphylaxis that worsened during the luteal phase of the menstrual cycle did not release histamine after incubation with progesterone.
3 However, a subsequent report demonstrated significant progesterone-induced histamine release in a patient with documented anaphylaxis after challenge with both synthetic and natural progesterone products.
4 In addition, incubation of her basophils with progesterone appeared to augment anti-IgE induced histamine release.To confirm progesterone-induced anaphylaxis, a controlled challenge may be necessary. After insertion of an intravenous line and with life-saving equipment immediately accessible, the usual approach is to inject progressively 1, 2, 5, 10, 25, and 50 mg of progesterone in oil in the arm every 60 to 90 minutes while keeping the patient under close supervision. Reactions usually are restricted to urticaria and flushing, although systemic anaphylaxis can occur.Treatment choices include an LHRH analog or oophorectomy. Most of the patients treated with an LHRH analog had total remission of anaphylaxis. However, side effects such as loss of secondary sexual characteristics and osteopenia may limit long-term use of this agent.
One woman has been reported to have episodes of anaphylaxis only during menstruation (a low progesterone state), with full recovery after hysterectomy with oophorectomy.
5 This apparently represents a syndrome of catamenial anaphylaxis not caused by progesterone.

References
1. Meggs J, Pescovitz OH, Metcalfe DD, Loriaux DL, Cutler G, Kaliner M. Progesterone sensitivity as a cause of recurrent anaphylaxis. N Engl J Med 1984;311:1236-8.
2. Slater JE, Raphael G, Cutler GB, Loriaux DL, Meggs WJ, Kaliner M. Recurrent anaphylaxis in menstruating women: treatment with a leutinizing hormone releasing hormone agonist, a preliminary report. Obstet Gynecol 1987;70:542-6.
3. Slater JE, Kaliner M. Effects of sex hormones on basophil histamine release in recurrent idiopathic anaphylaxis. J Allergy Clin Immunol 1987;80:285-90.
4. Scinto J, Enrione M, Bernstein D, Bernstein IL. In vitro leukocyte histamine release to progesterone and pregnanediol in a patient with recurrent anaphylaxis associated with exogenous administration of progesterone. J Allergy Clin Immunol 1990;85:228.
5. Burstein M, Rubinow A, Shalit M. Cyclic anaphylaxis associated with menstruation. Ann Allergy 1991;66:36-8.

Basically, there are two cycle related anaphylaxis symdromes women can get. I don't know which I have and I don't care. It's just nice to know there's a reason and I'm not nuts. Well, at least not about this.

Quote Of The Week

2006-09-25T18:17:00.000-04:00

10/5
"Each step was so small, so inconsequential, so well explained or, on occasion, 'regretted,' that unless one understood what the whole thing was in principle, what all these 'little measures'. . . must some day lead to, one no more saw it developing from day to day than a farmer in his field sees the corn growing. . . . Each act. . . is worse than the last, but only a little worse. You wait for the next and the next. You wait for one great shocking occasion, thinking that others, when such a shock comes, will join you in resisting somehow."-- Milton Mayer, They Thought They Were Free. The Germans: 1938-1945.
http://educate-yourself.org/cn/thoughttheywerefree20apr05.shtml
http://www.quaker.org/quest/issue-8-milton-mayer-3.htm

10/5
A tyrant must put on the appearance of uncommon devotion to religion. Subjects are less apprehensive of illegal treatment from a ruler whom they consider god-fearing and pious. On the other hand, they do less easily move against him, believing that he has the gods on his side.~~Aristotle

9/25
“When fascism comes to America, it will be wrapped in the flag and carrying the cross.” - Sinclair Lewis

Sinclair Lewis (February 7, 1885 — January 10, 1951) was an American novelist and playwright. In 1930 he became the first American to win the Nobel Prize in Literature, "for his vigorous and graphic art of description and his ability to create, with wit and humour, new types of characters". His works are known for their insightful and critical views of American society and capitalist values. His style is at times droll, satirical, yet sympathetic.

Colors

2006-09-23T20:26:00.000-04:00

I don't have the cognitive ability anymore, so please bare with me.

There is red/green color blind and blue/yellow color blind.

Many people with severe learning disabilities are told to read through yellow or blue screens when reading items printed on white paper. One or the other color will work. They never know which one, but one of them will.

Many people I have met online while dealing with the vertigo find yellow light works very well for them - very soothing and doesn't exacerbate their vertigo. For me, I need blue. NEED. Yellow sets me off.

So - what if there is something to this? What if dizzy folks worked with different colors to see if one helps reduce their vestibular symptoms? What part of the brain is connected to they eyes and ears that would cause this?

I know flourescent lights kill all of us when in buildings filled with them. But I actually do better when I have a combination of flourescent and incadescent.

Broader spectrum, yes. But why would the combination be better when the one makes me worse?

I'm wondering about this because my mom finally got a new bulb for the halogen light. It's been burned out all summer. Well, my vertigo has sucked all summer. But when that worked again, we didn't have those bloody dim yellow lamps on that were just killing me.

So - is there something to the color? I'm tempted to try some blue tinted lenses to find out if it helps.

L

Quote of The Day

2006-09-12T11:53:00.000-04:00

I sit here, feeling like crap from vertigo, and have the GREATEST quote sent to me.

Yes, my politics are showing:

“The power of the Executive to cast a man into prison without formulating any charge known to the law, and particularly to deny him the judgment of his peers, is in the highest degree odious and is the foundation of all totalitarian government whether Nazi or Communist.”
Winston Churchill

Secret prisons, Gitmo, detainees, bullying those who question, controlling the information given to the people, an opaque government are the building blocks of a new curtain - Made In The USA.

Suicide Prevention Day 9/10

2006-09-08T11:22:00.000-04:00

The Full Article from MMWR

An Ad Campaign For Hurricane Survivors

World Suicide Prevention Day Information.

US Suicide Prevention Information

ABC Primetime - BrainPort

2006-09-06T14:12:00.000-04:00

There is supposed to be a segment on Primetime on ABC tonight on a newdevice called the BrainPort. It is supposed to help blind people see. It also has an application inthe field of vestibular dysfunction also know as vertigo or dizzynesswhich I have. It's still in the testing phase trying to get FDA approval.I would urge you to watch. It's on at 9 pm central and 10 eastern.

Check your tv guide.

Thanks,Diane

Just Thoughts

2006-09-05T22:41:00.000-04:00

I'm finding it interesting - while I'm feeling better both physically and emotionally, I'm still pissed. I don't remember feeling this way.

Anyway, I had a great day yesterday and a very not-so-bad day today. I was able to eat at a Chinese buffet yesterday for the first time in about 5 years without being flat on the couch for 3 days from all the stimulous. Too many notes!

Today, I pinned a quilt that I hope to have finished by the weekend since my friend is getting married Saturday. 3 weeks to put together a queen-size quilt with over 300 different fabrics, 1400+ pieces and a specially designed quilting effect just for this quilt.

I've gotten about 1/8 quilted thus far. Not bad considering the size. Queen-size are roughly 90"x90". That's a LOT of ground to cover when you figure you're quilting at about 15 stitches per inch. And yes, it's by machine, not by hand. But not a long-arm quilter. No $$$ for that.

I've also found that my asthma is definitely affecting my vertigo. No wonder life has sucked so bad this summer. I knew my asthma was up, but didn't really bother controlling it. Then it got bad enough that I had to. Only when it finally got under control - which it isn't really, but I'm actually using my rescue inhaler - did I notice the profound difference in the vestibular symptoms. WOW. Life doesn't suck anymore!

I had also decided - a few weeks ago - that getting pissed off because no one else around the house (there are 3 of us) was cleaning, that I would just do it myself. I'd rather resent them for not doing it, but having clean anyway, than resent them and have the stress of a dirty house. I set up a schedule that I knew I could handle - dizzy or not - and have stuck to it. Having the house cleaner and more orderly each week has dropped my stress level far more than I thought it would.

I do some cleaning every day - but never more than 15 minutes. This little bit every day has made the house look better every day, let me not stress about something because it'll get done on its proper day and when people come over, I'm not stressed about how it looks. Plus, doing these chores is good occupational therapy for me. Just another way to overcome the dizziness. So - yes, I resent M&D for not doing their fair share. But it does me so much more good than the resentment does me harm, that I am totally fine with the situation.

So, with baby steps, I'm getting better. I'm climbing out of this tomb I somehow crawled into. I'm still dreading winter. I'm still dreading the season changes. But my brain is calmer, more peaceful. That makes anything more tolerable.

L

Something Clicked

2006-08-31T22:52:00.000-04:00

I truly don't know what clicked in my brain, but something did. Monday, 8/28, life became far less dizzy, off-balance, clouded.

With Ernesto tracking up the East Coast, I may be flat on my back again - I don't know. Normally, large coastal storms - Nor'Easters as we call them - make my brain spin like no other. I have guesses as to why, but I truly don't know. Generally, coastal storms are travelling quickly and gaining in power as they come northward. I think the combination of the 2 dynamics is too much for my inner ears to deal with at once, and so sends my brain into a hissy fit of great proportion. I hope not, but we'll find out.

The asthma seems better - which will always make my mood improve. Breathing has a way of making life better.

So, I'm still bitter, still angry and still have a huge chip on my shoulder. But it seems as if maybe, just maybe, the true depression is lifting. The venom has left and now it's just residual again. I feel like quilting, am quilting, and feel like working on the blogs again.

It's really difficult to see what good you do when you consider it all an exercise in futility anyway. LOL I don't see it as such today.

One Day At A Time. ODAAT.

L

Olberman Pontificates

2006-08-31T22:49:00.000-04:00

Keith Olbermann last night (excerpts):
"The man who sees absolutes, where all other men see nuances and shadesof meaning, is either a prophet, or a quack.
Donald S. Rumsfeld is not a prophet.

And he quotes Edward R Murrow:

'We must not confuse dissent with disloyalty," he said, in 1954.
"We must remember always that accusation is not proof, and that conviction depends upon evidence and due process of law.
"We will not walk in fear - one, of another. We will not be driven by fear into an age of un-reason, if we dig deep in our history and our doctrine, and remember that we are not descended from fearful men;
"Not from men who feared to write, to speak, to associate, and to defend causes that were - for the moment - unpopular.'

http://www.crooksandliars.com/2006/08/30/keith-olbermann-delivers-one-hell-of-a-commentary-on-rumsfeld/#more-9932

The Day

2006-08-23T20:47:00.000-04:00

I really need to learn to shut my mouth and just hang up the phone.

Just hung up on a creditor. We want to resolve this peacefully. Do the right thing. Borrow from other people. Make your parents dip into their retirement.

Like I haven't tried all of those options in the last 5 years. But the last thing I will do is jeapardize my parent's retirement to take responsibility for my debt that I thought I'd be able to pay but got disabled in the middle of.

So, we had a bit of a discussion that ended with me saying goodbye in the middle of his sentance and hanging up. When he calls tomorrow - which he will - I'll get his address and mail a cease and desist letter. Thankfully they can't call more than once a day.

Went to the doc today. He's such a great guy. I wish he could be cloned. So understanding. More than most.

Anyway, he got a first hand glimpse of my asthma, my scarring and my allergies. While coughing and hacking up what felt like a half a lung through a cocktail straw, he said Singulair would work on all of the symptoms except the scarring. Hey - if I can breathe and stop itching without taking 100 mg of Benadryl, I'll take it.

So, hopefully the prednisone will still be working when the singulair starts working so I don't have any time with major symptoms.

Just to have one little thing gone will feel so good.

Bleepin' hornets. Oh - there was an article about them - very scary. I think I'm glad I don't live in AL:
http://www.montgomeryadvertiser.com/apps/pbcs.dll/article?AID=/20060717/NEWS02/607170317/1009

Giant yellow jacket nests popping up all over with multiple queens. Like *12* queens and counting in one nest that's been destroyed. They estimated 100,000 bees in the size of a VX Beetle. The largest "normal" nest has 3000. Mine only had about 25-100.

But why AL? I could understand the other more badly hit hurricane states because of all the trees that have gone down - material for nest building, and all the garbage around for them to feed on, plus a mild winter. But AL? It should be interesting to see what theories they come up with.

Maslow

2006-08-22T21:25:00.000-04:00

I want to respond to a comment I just read about finding peace after acceptance.

I've been pretty accepting of my disability. But I also know that any long-term disaster has far reaching emotional consequences. What many people who become disabled are dealing with is a long term disaster. Professionals in the "disaster industry" state the realization that this situation isn't going away anytime soon is at about 3 years. Well, for me, it was 5.

This spring became that epiphany. This isn't going away. I have no income. I have no home. I have virtually no friends. I'm pissed about it. To speak to me of peace at this moment is condascending and ignorant.

My only income in SS. We all know how much that pays. I live with my parents in their home. When they die and I am still in this position, even if they left the house to me, I couldn't afford taxes, upkeep and utilites, much less food. Because I can't get out and socialize, my social network is slim pickin's. Which normally is fine. But when I need something done - like now I need a hand rail installed on our stairs for my father - I have no one to fall back on.

So - yes, I will find peace again. I will accept the nature of my life as it is now. But so many of the people who have been thusly afflicted have spouses that haven't divorced them. I'm not that lucky. Peace is a hell of a lot easier to find when you've got some assurances of where you're sleeping tomorrow.

It's all about Maslow's hierarchy of needs.

5. Actualization
4. Status (esteem)
3. Love/belonging
2. Safety
1. Physiological (biological needs)

The base - Physiological, must be met before anything else can happen - eat, drink, sleep, etc.
The second level is Safety - Security of employment, revenues and resources
Physical security - safety from violence, delinquency, aggressions
Moral and physiological security
Familial security
Security of health
The third step up is Love/Belonging - friendship, intimacy, family.
The fourth step is Status - The lower of the levels relates to elements like fame, respect, and glory. The higher level is contingent to concepts like confidence, competence, and achievement.
Fifth - Actualization:
Maslow writes the following of self-actualizing people:
They embrace the facts and realities of the world (including themselves) rather than denying or avoiding them.
They are spontaneous in their ideas and actions.
They are creative.
They are interested in solving problems; this often includes the problems of others. Solving these problems is often a key focus in their lives.
They feel a closeness to other people, and generally appreciate life.
They have a system of morality that is fully internalized and independent of external authority.
They judge others without prejudice, in a way that can be termed objective.
In short, self-actualization is reaching your fullest potential.

(all found on Wikipedia - http://en.wikipedia.org/wiki/Maslow's_hierarchy_of_needs)

I was at the 5th level. And now I don't even have the second one locked in, the third is laughable right now. I'm not even looking at the fourth. I know I'm a LONG ways away from that. And the 5th - I'm so angry for having lost that, you can't imagine.

I have glimpses of it through my work for Hancock County, MS, and hurricane relief. But I'm beginning to think that glimpses are a bad thing. I don't know yet.

More Health Crap

2006-08-21T22:49:00.000-04:00

8/21 You'd think the vertigo would be enough. But no - I need more.

I referenced not being a stranger to the chronic ilness universe. I had Chronic Fatigue before it was called Chronic Fatigue. It took a few years, but I figured it out and actually became stronger, so was thrilled and probably a little over confident coming into the vertigo.

I also have asthma. It started after a couple of incidents. First, the airbag in my car deployed. Second, I assisted ventilating a house with several CO poisoning victims. Breathing was NOT easy after that one.

Then, right before and during the initial vertigo, I had chronic sinusitis brought on by the glorious air quality of Dallas TX. I had some environmental allergies, but nothing like there. It's taken me close to 4 years to regain my immune system from that 14 month stint. I also had surgery to open up 1 set of sinuses (frontal) that were literally swollen shut and infected.

Carpal Tunnel. Had surgery on one hand. Should have had it on the other. But - they still work even if numb, so what do I care? Plus, I found several exercises that work GREAT at easing the symptoms.

Vitreous detachment. This is a fun one. I'm very near sighted. Myopic - you can say it. No biggie. And I knew I was at risk for retinal detachment, but no one every mentioned this. One day, I had flashes in my left eye - whenever I moved it. Plus, floaters like you wouldn't believe. I kept thinking I had a bug flying around, or a hair in front of my eye. This can lead to RD. Sweet. I keep getting checked, and they keep finding all is ok. Just a huge 'thread' of vitreous hanging out in my central vision. The brighter the light is, the more pronounced this is.

And the latest - bee stings. I get stung every year. It comes with playing with flowers. And normally I don't mind. But this year, I got stung about 10 times by yellow jackets (ground hornets). My allergies are way up, my asthma's way up, I have heartburn like never before, I'm scarring - which makes NO sense. The tiniest scratch becomes this dark ugly thing that makes it look like I'm burning myself with cigarettes. I was on pred, am back on pred. Was on a steroidal inhalor - had to quit because of acute laryngitis. Have increased my antihystamine by 50-100% to keep the itching down.

And of course, when any of these are worse, it seems as if the vertigo is worse.
Lucky me.

8/22 - Last night, I was able to breathe right for the first time in I don't know how long. It seems as if I've been living with half lung function for a month now. You take the deepest breath you can, and you feel like you're going to push your stomach out your belly button, and it still isn't enough. I'm finally able to take a full breath, know it's a full breath, and be able to do it without "stepping" my breathing - breath, hold for a second, breath a little deeper, hold for a second.

It really cuts down on the anxiety. That's for sure. Maybe the pred is finally kicking in. That and a couple of hits of albuterol before you lie down.

I hate that. I feel like I'm speed balling. Benadryl and albuterol together. It's the worst feeling and i have NO clue why druggies do it.

Paperwork

2006-08-21T22:30:00.000-04:00

There is little else I hate more than paperwork.

I'm not stranger to chronic illness, but I've never had to be on disability before.

Oh, My, God. I have never seen so much paperwork - AND to have to fill it out annually is just beyond me.

I have a life insurance police - well, if I hadn't borrowed against it, SS would have made me cash it in. So, at least I got to keep it. The insurance company has a disability clause that states it will pay the premium for you, should you be unable to. Woo! But, you have to refile the information annually and bug your doc to fill out his portion of the crap to send in with it.

Then there's student loans. I'm still holding off on permanently getting a forebearance or whatever it's called because I keep hoping I'll go back to work and pay them off. Problem is - you have to send that paperwork in every 6 months.

And bad debt. Writing letters of cease and desist in the phone calls, replying to their requests, filling out the paperwork when served for court.

Going to new doctors - I'm not doing that anymore. But still - pages and pages of forms.

Going on disability! That was a hill of forms. I was so bad back then, I had to get a paralegal to help me. I couldn't read and comprehend. I just couldn't. And it was so overwhelming for Mom. I thank God I don't have to do that crap annually. But give them time - they'll figure out that people would rather drop off the radar then go through that every year. It would save the Feds tons of cash.

I'm sure many people find it frustrating, annoying, and probably overwhelming. But for me, I cry. Almost every time. Trying to figure out what information they want is virtually impossible for me. I just don't get what they want from the way the questions are worded.

I just filled the one out for the life insurance. I'm getting ready to have the information tattooed on my body. I've got a couple already - might as well make 1 useful. At least I'm going to my doc in a couple of days. He can fill out his part - which I try to do for him - and sign it and send it.

Why is it always such an uphill battle?

Call Me Jaded

2006-08-21T00:41:00.000-04:00

I joke about how many gues are going to come to my door asking if there is a disabled, dizzy 40 y.o. female wanting a long term relationship.

Truth is, I don't. I'm lonely as hell, but I don't want one.

First - the man I thought I was in a LTR with - the one who said at least a half dozen times that he wanted to marry me - refused to help me when I became ill. Actually, that's a lie. He was willing to loan me $1G at 1 point over prime to be paid back within 6 months. True love, Baby.

Considering that G was a drop in the medical bill bucket, I not-so-respectfully declined and left as soon as I was healthy enough. I still ended up taking 3 weeks to go from DFW to upstate NY, taking time to recover again in KY at my best friend's house.

So, needless to say, I'm not thrilled with the possibility of such a stellar arrangement again. Besides, I figure the only guy who would find a nearly house-bound, dizzy broud attractive is an abusive controlling SOB who would delight in his own personal slave. Thanks anyway.

2nd - I feel relationships are an equal partnership. While I didn't make the money the above AH made (he worked at Texas Instruments), I did bring in landscaping, interior design, and house maintenance. During one of my more spiteful moments, I figured it out. If he had paid for all the crap I did around that house, compared to me paying half of the bills, he'd owe ME money.

Well, I can't do that now. I bring nothing of value to the table. I can't even keep the promise of a clean house, clean laundry and meals on the table. Everything would need to be built to my needs - an open floor plan (fewer bruised shoulders from turning corners too quickly), double decker dishwasher, elevated washer and dryer - front loading, etc. I can't even cover my own expenses. I'm doing my own bankrupcy because I can't afford the attorney.
So how can I trust anyone to not become resentful and use this kind of ammunition against me?

I can't.

Add the inability to drive any distance and not owning a vehicle, escape would be impossible. I will not succomb to what amounts to a debtor's prison.

I mean, how many guys are willing to do ALL the crap they did when single, but now for a second person - which adds to the amount you already do? I don't care what anyone says, it's more work when it's two than when it's one. I've done it. And while a relationship is work, it's also supposed to make things easier and more enjoyable, not more cumbersome.

I have hung out with guys all my life - out of the hundreds I have grown up with, gone to school and college with, worked with, managed at work, had clients of, friends of, there isn't one. And if I haven't found a single one in 40 years, what can you do to prove to me there's one out there? Not a whole lot.

Call me jaded. He doesn't exist.

8/21 - I forgot to add - don't start giving me that crap about "you have so many good qualities" and the infamous "I don't consider you disabled". They hold NO water with me.

My only social network is blood relatives and the internet. I'm able to take baked goods down to our local police department about twice a month, and I go to my chiropractor's twice a month. That is the extent of my socialization. I see 7 people regularly. Another 3 or 4 once a month and another 5 or 6 quarterly. That's it. You count the number of people you see 4 or more times a month, and then start giving me that crap.

Ups and Downs

2006-08-20T13:53:00.000-04:00

There are some days where I think, "I'll beat this thing and get back to living." And then there are days like this summer.

Last night and this AM, I had hope. I was day dreaming about taking on yet another profession - a skilled trade like electrician. Plumbing would be cool too, but they have a lot of heavy lifting that I really don't feel I'm up to. I'm 5'3". Strong for my size, but still short.

And then, this afternoon hit. I went to a fabric store and have come home twirling. Brain is just trying to rip my eyes out of their sockets to spin in my skull. I hate that tug.

Plus, I'm still not over the stings. I got stung about 8 weeks ago by a yellow jacket nest. I was put on benadryl and prednisone with a script for an epi pen, which I got just in case. I've been stung once or twice since then (I'm outside a lot and generally get stung berry picking). Yesterday and today - a full 2 months after the major stinging - I've had to take oodles of benadryl to stop itching. That's being on another round of pred too - asthma is the worst in 4 years.

So - optimism isn't as high as it could be.

But, I keep on keeping on. I'm making 2 quilts for a friend - 1 in process now, the other patiently waiting. I have cukes and summer squash soaking in salt water to make bread and butter pickles later. And have done my normal cleaning.

Odd as it sounds - that's where I find my hope. I started my rehab with cleaning. Sweeping the floors was all I could do. But I did that every day. Graduated to sweeping AND vacuuming. Ooo. And just kept adding to the list until I was able to do yard work like mowing, making a couple of retaining walls, etc. So, I'm going back to that. The dizzies are killer, but I can still sweep and vacuum. So I will.

Going to the store was too much, and was only there for 15 minutes, but with the past few weeks having been what they were, it was too much. But I did it anyway.

That is the life of a vestibular patient.

Wild Child

2006-08-19T12:55:00.000-04:00

I've been working on taming this cat for, oh, 3 months now. He's just a kitten, and has obviously reversed his starvation enough to find squirrels a worthy adversary. LOL

We ended up setting a tall step ladder against a radioshack/shed behind the garage that he could jump down to, luring him with BBQ chicken - he'll risk his life for that stuff! Once we let him get down without being watched, it took 2 minutes and he was strolling across the yard for more chicken.

Cicero is his name. It was Chamille before we saw definitive proof he was a boy. Chamille due to being a chameleon.

You can see the tarp covering the radioshack's roof - what he jumped down on and then figured out the ladder in no time! Since we all know there will be a next time, I'll get pictures of that.

Hallelujah

2006-08-19T10:22:00.000-04:00

I don't know why, but this Leonard Cohen song really hits home. It's been stuck in my brain for days - along with a Cowboy Junkies tune You're Missing.

Now I've heard there was a secret chord
That David played, and it pleased the Lord
But you don't really care for music, do you?
It goes like this
The fourth, the fifth
The minor fall, the major lift
The baffled kind composing Hallelujah

Chorus of Hallelujah

Your faith was strong, but you needed proof
You saw her bathing on the roof
Her beauty and the moonlight overthrew you
She tied you to the kitchen chair
She broker your thrown and she cut your hair
And from your lips she drew the Hallelujah

Chorus of Hallelujah

You say I took the name in vain
I don't even know the name
But if I did, well, really, what's it to you?
There's a blaze of life in every word
It doesn't matter which you heard
The holy or the broken Hallelujah

Chorus of Hallelujah

I did my best, it wasn't much
I couldn't feel, so I tried to touch
I've told the truth, I didn't come to fool you
And even though it all went wrong
I'll stand before the Lord of Song
With nothing on my tongue but Hallelujah

(Chorus - repeat)

What I lost

2006-08-18T20:33:00.000-04:00

Most disabilities mean the loss of some freedom, some abilities. Often, these are replaced by an enhancement of other abilities. It's just the body's way of compensating for the loss. Also, when there is a loss of ability, there is generally a second half of the body that can help assist with the bilateral side of loss. You lose an arm, a leg, an eye, a kidney, a lung. All of these have a second half - they are one of a pair that allows you some form of maintained ability - albeit limited.

Vestibular systems aren't like that. If you lose half, you basically have lost it all. It's both mechanically and electrically driven. If the electrical system (nerves) get shorted out like mine, it doesn't matter if the mechanical (inner ear fluids, crystals, etc.) is working perfectly. Shorted wires will never transmit the proper signals no matter how much it tries, and as in my case, the doctors will tell you "either your brain will rewire it or it won't". Sweet, huh?

So, you have signals from your eyes and feet that are working fine but are in complete conflict with the nerves in your ear. Hence, the dizziness, imbalance, and outright vertigo.

Because of that, any signals you get from your feet - say, from walking - will make you dizzy. Any signals from your eyes - say, from reading - will make you dizzy.

For that reason, I have lost just about everything.

Not only have I lost my home, my job, my car, my savings, my credit rating and my social life, I have lost my ability to read much, write much, drive, walk any distance, use any type of power tools, talk on the phone, be in crowds, watch action movies (like Runaway Bride) and work for more than 20 minutes at a time, for no more than 4 hours in a day with a 2 hour nap in the middle. Even if I did get enough money to have my own place, most days I can't cook, most weeks I can't do my own laundry, and the general upkeep of even the simplest construction project lands me on the couch for a couple of days.

Drugs help (as do prescription meds) - just kidding. Meclizine - Antivert, helps, but only masks the vestibular system. It doesn't fix anything. So, if you take it too often, you end up worse than before you took it. They can give valium, but I'm not into addictive meds, thank you very much.

So, life is give and take. I can go for a walk, but only if I'm willing to spend more time than usual napping. Ditto for reading, writing, talking on the phone, blah blah blah. I can drive a total of about a mile a day. That's it. I can ride in the car, but again, more than 20 minutes, and I'm toast for a day.

My life is all about trades.

A humorous example of my social life:

A friend who's in construction was putting a new roof on my parents' house. I asked him if I could bake anything for him (I'm The Muffin Lady to those in the know). He told me I didn't have to do that. I told him that he and the two other guys were the first men not related to me and under the age of 70 that I had seen in a year. The least I could do is make some muffins.

He almost fell off the roof laughing. But it was true! THAT is my social life.

6 Weeks

2006-08-18T09:49:00.000-04:00

First off, I live similarly to the blind. I have the layout of the house virtually memorized so I don't need to use my eyesight to figure things out. This saves the brain so much effort!

So - when things change, life is difficult.

My education through exercise physiology tells me the body needs 4 weeks to become familiar with new moves, new motions, new weights, etc. BS. Maybe for 'normal' people. But it takes my brain and body 6 weeks to figure things out and become familar with them.

Let's take the last 2 weeks as an example. My father moved a cabinet out of the house. I was given a new printer (way cool! - thank you Mom and Sister!) which meant the office needed another shelf unit and rearranging of half the room.

My body will need 6 weeks before it's used to this arrangement. And this comes after changing the bathroom door 4 weeks ago. Because of these changes, I'll be dizzy for a total of 8 weeks, figuring no more changes to the layout of the house.

My aunt visits 2-3 times per week. She also goes to FL for 10ish weeks in the late fall. When she comes back, it takes me 6 weeks to not be dizzy after she visits.

Visiting my sister for a week makes me dizzy for at least 2. The week I'm there and the week after to readjust to my surroundings. Better than 12 - 6 there and 6 back. But it really gives people an idea as to WHY I don't like to travel. Forget the actual vertigo from riding in a car for more than 20 minutes.

And all through this, my cognitive ability is shot. Thinking, understanding English (which should be my first language), simple concepts, simple addition, writing, understanding the written word, speaking - are all so difficult I tend not to do any of them.

6 weeks. You try it.

History

2006-08-18T08:57:00.000-04:00

I know it's probably wrong of me, but I get so sick of people telling me that I should be thankful for what I have. Look at all the people who have lost so much through natural disasters, wars, injury, illness, etc.

You really don't want to know what my telepathy is stating to these people.

Natural disasters - yup. They lost it all. So did I. They can rebuild. I can't.

I moved away from my home town over 10 years ago. Loved it! I lived the life of a gypsy. I moved, on average, every 14 months. I finally got through college, worked in my field, LOVED it, and was enjoying life.

I lived in several towns in NYS, lived in Louisville, KY area and in Dallas, TX area. Loved L-ville. Hated the Big D.

I got sick in Dallas. That's the beginning of the end. I went deep into debt trying to get healthy and live there all at the same time. It didn't work. I ended up moving back to my home town where, rural as it is, had more aggressive medicine than DFW. I had hoped to have my sinus surgery, get healthy and move on.

Nope.

Lucky me, I got what is affectionately known as Vestibular Neuritis. I should have been done with it in 3-6 weeks, but because 90% of Dr's don't know you need rehab within that time limit, I became one of the even luckier few that doesn't recover. So, with some research, I found out that half of those who don't recover in those first weeks will do so in 8 years. 8 YEARS.

OK. Fine. I can deal with that. 8 years out of my life. But, if I recover, no big whup.

Well, I've entered year 6 and have hit a plateau. If anything, I've regressed some. And from what I've seen with others in my shoes, that's normal for the half that don't recover. Ooo. Doesn't that just thrill me all to pieces?

Another thing the docs don't tell you is that season changes affect you. I'm OK for the latter half of the summer and winter. But spring and fall are killers. So - here I am, having regressed some over the summer - which is supposed to be a good time for me, and autumn is rapidly approaching.

People tell me not to "project" or play the "what if" game. Well, there's also the saying that insanity is doing the same thing over and over expecting different results. I know autumn and spring suck. They have for 5 years, so why it would change now is beyond me. And expecting it to change is crazy. So don't give me that crap that I'm worrying over nothing, that I'm mourning something that has yet to be lost. My loss is real. And that I will lose more over the sucky seasons is real.

5 Years and Counting

2006-08-17T23:16:00.000-04:00

I have Vestibular Neuritis.

Did you know there are 13 different diagnoses for being dizzy, off balance, vertigo or other "vestibular disorders?

While this blog is about mine specifically, I'd love to hear from folks who also have "invisible disabilities". Those which people can't see, but you have to have one of those disabled signs for your car. The ones that people give you dirty looks over.

Or better yet - the "You don't look disabled to me", "I don't consider you disabled." That's my personal favorite. And then there's, "you're only disabled in your mind."

Well, until one of these statements pays the bills, allows me to have a social life, allows me even just one of the things I no longer am capable of doing, I might actually listen. But they don't. So I tend to tell people to go bugger themselves and walk away crying yet again.