My personal thoughts about life with a disability and all other things I consider important in my life.

Monday, February 23, 2009

Dueling Banjos

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'

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.

Tuesday, February 03, 2009

Progesterone Induced Anaphylaxis News

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
Dong Quai
False Unicorn
Green Beans
Saw Palmetto

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!

Labels: , , ,

Sunday, August 03, 2008

Another Year, No New Allergy

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!

Labels: , , ,

Monday, April 14, 2008

More on Progesterone Allergy

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:
While I don't completely agree with some of the observations and theories, the article makes some very good points.

Here's another:

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
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

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?

Labels: ,

A Vascular Surgeons Dream

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.

Labels: , , , ,

Friday, February 01, 2008

10 months and counting

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.

Tuesday, January 08, 2008


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.

Monday, January 07, 2008


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