One Sick Mother

Setting Goals: The Reading List

I have always been a very driven, goal oriented person.  It is one of the reasons I did well in the software business for so long, I was able to strive toward a goal;  work to a deadline and pull many (sometimes unwilling) colleagues along with me, by sheer force of will (and occasional threats of violence).

But it is very difficult to set goals when you are chronically ill. Surprisingly (to me), even the small goals proved a challenge. 

I tried. I took some classes. I had to drop out of the PhotoShop class halfway through because I was having seizures or auras.  I stopped the yoga class because they were doing a lot of moves that are ill advised for a person with Ehlers-Danlos Syndrome and/or Syringomyelia. I kept having to bail on my neighbour for our dog-walking runs because of seizures and fatigue or pain. I was fired from Physical Therapy because I kept having seizures there. And I grew tired of missing goals I set for myself around the house (like repaint the upstairs bathroom, which is tiny); unable to perform them due to pain, fatigue, seizures or dizziness.

There are a lot of things I would like to do and learn. Ambitious (and currently impossible) projects like an MBA aside; there are many classes I would like to attend, just for laughs: Knife skills, sewing, ballroom dancing,  (an ambitious one, that), yoga, pilates, pottery, jewelry making, beading, painting -... the list is endless! But right now, I can't do it. I cannot spend money I don't have on a class I may not be able to attend.  It is very limiting. And soul destroying.

Recently, my seizures and dizziness have been even worse, leaving me even more bored and isolated. I have been spending less time on the computer because the screen bothers my eyes. I was stuck for something to do, because I CANNOT sit and watch telly for hours on end.  I knit until my hands hurt. I listened to all my CD a gazillion times, got bored with all of them, but was too poor or stingy to seek new music.  So I finally renewed my relationship with the public library. 

Cool.

And I decided that now is the perfect time; -while I am pretty disabled, and until I can get some decent treatment, to do something I had been meaning to do for many years. Read some classic novels.  Oh yeah baby!  Here is an opportunity to set some goals AND to improve my tiny little mind.  My butt may suffer, but it was suffering anyway. Without good medical guidance, there is no helping the butt right now.

I  decided to set myself a list of 26 classic novels to read, one for each letter of the alphabet. When I am finished that list I will assign myself another one. I was unsure where to begin, so I shouted out to my Facebook friends for some recommendations which they readily gave (thank you!).  And then I gathered a few "100 best..." lists off the Internet, went through those and -somewhat randomly- came up with my final list. I thought to keep it to one per letter of the alphabet where possible, because that would place some books on there that I probably would not have chosen otherwise -just to mix things up a bit. And it stops me from reading only books that start with "G" or "H", or from reading six books by the same author at once; both habits towards which I gravitate.  

There are some obvious holes in this list because I may have read the book already a gazillion times, (Wuthering Heights) or because I just couldn't be arsed (Ulysses).  I couldn't find any J, K, X and Q books, so I substituted those with  a few other letters.  I am sharing this list just to keep myself honest (but I reserve the right to stop reading a book if I hate it)!

A

Anna Kerenina by Leo Tolstoy

Atlas Shrugged by Ayn Rand

B

Blood Meridian by Cormac McCarthy

C

Cat's Cradle by Kurt Vonnegut

Crime and Punishment by Fyodor Dostoevsky

D
Dracula by Bram Stoker

E

Enders's Game  by Orson Scott Card

F

Frankenstein by Mary Shelly

G

Germinal by Emile Zola

The Grapes of Wrath by  John Steinbeck

H

A Handful of Dust Evelyn Waugh 
(Mrs whatsername with the hand-knit Fair Isle sweaters from high school will be happy that I finally crossed something off me High school reading list after all these years.  Although I didn't realize until today that Waugh wrote "Brideshead Revisited", which I had read  before high school, or I might have lost one less brownie point from her.)

The Heart of the Matter by Graham Greene

I

I , Claudius by  Robert Graves
(loved the TV series with Derek Jacoby!)

L

Loving by Henry Green

M

Madame Bovary by Gustave Flaubert

N

Nostromo by Joseph Conrad

O

One Flew over the Cuckoo's Nest by Ken Kesey

P

Play it As It Lays by Joan Didion

R

Ragtime by E.L. Doctorow

S

Shirley by  Charlotte Bronte

T

Tender is the Night by F. Scott Fitzgerald

U

Under the Volcano by Malcolm Lowry

V

V. by Thomas Pynchon

W

The Wide Sargasso Sea by Jean Rhys

Y

Yarrow by Charles de Lint

Z

Zuleika Dobson by Max Beerbohm

 

I have no idea how long this will take me, and I am setting myself no timeframes for completion of this task. The satisfaction should be in the journey, anyway. 

I hope.

An Updatey Kind of Post

I guess you guys are due an an update on me and my situation.  When I start getting phone calls along the lines of "How are you?  What's going on with the diagnosis?", I know I am overdue a personal update. After all many of my readers are my good friends, who rely on this blog for the latest in my medical woes (it saves me repeating myself!)

• I finally got my medical records from the cardiologist. It only took about 5 weeks.
   
• I have been trying to get into the Dysautonomia lab in NYC for extensive dysautonomia testing, which my rheumy fully supports. This place is harder to get into than the Freemasons!  They already rejected my prescription from the Rheumy, saying they need more information on my symptoms -but not from me (who do they think experiences the symptoms, Barack Obama?). So I am off to see #25, so I can give him a list of my symptoms and history, which he can then re-package and send to the lab.  It is completely ludicrous.
   
• We had the Middle school IEP meeting for Joe (Middle school! Bloody hell! I'm not ready!). It went well, but it was a bit disconcerting to see the amount of backup I got when I asked for an aide for him. No fewer than FIVE (5) of the people who work closely with him nodded emphatically  and said he would need a full-time aide in middle school. I am grateful for the support (and of course we got the aide). But now I am kind of terrified of middle school. And Joe will hit the roof when he learns he will have a 1-one-1!  Too bad. He will definitely need it -at least for the first year. 
  
  He is going to be in a co-teaching class: A mixture of GenEd and SpecEd kids and two teachers. One SpecEd and one Gen Ed. I think this will be a good setup for him.
   
• Grace turned 9 in May.  She is halfway to (official) adulthood now. Mother of God! I'm not ready for this!
   
• Guys may want to skip this one: I have been feeling especially shitty of late. Seizurey, headachy, numb-footy, unsteady, interspersed with short periods of feeling like my pre-seizure self. I think a lot has to do with the fact that my cycle is completely messed up. I have been trying to get in to see a new gynecologist, recommended by the rheumy, who I trust.  However this new doctor is somewhere between the Freemasons and the NYC dysautonomia clinic on the scale of 'difficulty to get into" I have considered going back to my old gyno, but I have rejected this notion on grounds that she is a bitch.
   
• (Yes. I am a bitch too. I have never denied this)
   
• I stopped taking Limbrel.  This was kind of an unconscious decision. I forgot to take it for a day. When I remembered that I had forgot, I realized that I was feeling marginally less bloaty, so I went right on forgetting! After a(nother) day or so, the severe right-side abdominal pain I had had for a month, which I had thought was an ovary, started to abate.  It has not recurred.   The rheumy says it was the right decision. Another med bites the dust!
   
• My hands are slightly better, but I think this is because the weather has been warmer.
• My good friend Wynda, who left this area about 10 years ago, returned for a visit and it was lovely to see her. She was amazed (naturally) at how big and interesting the kids have become. When last she saw them, there was only one, and he was just an eating and pooing machine back then (albeit a cute one!).
   
• I have not lost the 10 pounds I gained while on Limbrel.  I went back on Atkins for about a week, but ...Man!  -steak aside  (and I love steak, but it is expensive); it is so bloody BORING! I don't know how I did it for so long...

I'm sure there is more, but that should be enough to be getting along with. 

Oslo Health Solutions: Preying On The Sick Part I

Every now-and-again, on a support board or some other website, I will run across a person who is asking about a herbal remedy they found on the Internet. Had we heard of it?  Has anyone tried it? Does it work? What are the side effects? Is the money-back guarantee for real?  Now, it very easy for a well person in the cold light of day to spout hackneyed phrases like "stay away from miracle cures" and "if it sounds too good to be true, it probably is". Those who are well and relatively pain-free don't understand the desperation some of us with chronic conditions (and our families) can go through when faced with an incurable condition and very little help. It is easy for the well to warn that cross-border herbal remedies are not regulated and that we have no clue what we might be getting.

Yes, it is easy to say if you are well.

However,  if you are looking down both barrels of a chronically painful and potentially disabling condition like Syringomyelia, for yourself or your child (or your  mother /aunt /brother /grandchild /father /sister /uncle /niece /nephew... etc) and it is three in the morning and you can't sleep for pain and worry, can't find a specialist who knows about the condition within 300 miles and then maybe some of these solutions may seem like they are worth a try.  How many among us would not spend a hundred dollars to try and help a loved one?   

Sick people and their families can be easy pickings for unscrupulous product developers and sales people.  I remember a couple of years ago, -in Feb '07 actually, I came across a product called Syrotab  mentioned on a message board. The product claimed that  “Syrotab is a completely guaranteed and clinically proven herbal treatment for Syringomyelia.

An admitted bold claim, but they say they can back it up.

If you look at the web site for Syrotab, it looks legit. 

 

The site is slick and professional looking, with a picture of a beauitful but rather vacant-looking bi-racial woman, flanked by a couple of handsome guys in the background; one serious and one trying to look sincere. The site has a short but accurate description of what Syringomyelia entails and then they get to their -self-acknowledged "bold" claims of treatment (not cure!) within a few weeks. They back up these claims with promises of clinical trials and money-back guarantees up the wazoo.

Back in February '07, I did some analysis on Syrotab.  I checked their site to try and find details on their clinical trial results. but the link said it is "coming soon"  For a laugh, I checked again today. Guess what?  It is still  "coming soon"!  Shocker!   Did you ever hear the Jamaican expression "Soon Come" (i.e. never)?   Yep. It's the same deal.

Back in '07, I cut and pasted some text from their website:

“Syrotab is a completely guaranteed and clinically proven herbal treatment for Syringomyelia.

It consists of a formulation consisting of purely natural ingredients based on the Unani (Greek) system of herbal medicine blended together in a specific proportion to fight and treat Syringomyelia effectively.

Thousands of patients have been successfully treated with Syrotab over the past few years. Syrotab is a completely outstanding product and there is absolutely no alternative to its unique formula. Had the effectiveness of Syrotab not been proven beyond any doubt, it would not be possible for us to make such a bold claim.

The main ingredients of Syrotab tablets are:
Magnesium Murakab
Zinc Murakab
Berberis aristate Ext
Egg Shell Calcium
Sulphur
Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.
Treatment with Syrotab is very rapid obvious results can be noticed within 40 days of use. A complete course of treatment lasts three months.

Syrotab is taken in an oral pill form and the normal dosage is two tablets twice a day, mornings and evenings. There are absolutely no side effects and the treatment is safe and sold over the counter.

Syrotab comes for a fixed price of $230 for a one month supply….”  Update: the price is now $79.99.  Bargain!     ...NOT!

I researched some of the ingredients mentioned, which was an education in itself.  I will get into all of that in part two of this piece.

When researching these ingredients, I came across something very interesting.  Amylotab! Here again, was my friend,. the vacant biracial woman.

...and here is the text from the "about Amylotab" page...

 
Amylotab is a completely guaranteed and clinically proven herbal treatment for Cutaneous Amyloidosis.

It consists of a formulation consisting of purely natural ingredients based on the Unani (Greek) system of herbal medicine blended together in a specific proportion to fight and treat Cutaneous Amyloidosis effectively.

Thousands of patients have been successfully treated with Amylotab over the past few years. Amylotab is a completely outstanding product and there is absolutely no alternative to its unique formula. Had the effectiveness of Amylotab not been proven beyond any doubt, it would not be possible for us to make such a bold claim.

The main ingredients of Amylotab tablets are:

Magnesium Murakab
Zinc Murakab
Berberis aristate Ext
Egg Shell Calcium
Sulphur
Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.

Treatment with Amylotab is very rapid obvious results can be noticed within 2 months (60 days) of use. A complete course of treatment lasts four months.

Amylotab is taken in an oral pill form and the normal dosage is two tablets twice a day, mornings and evenings. There are absolutely no side effects and the treatment is safe and sold over the counter.

Amylotab comes for a fixed price of $290 for a one month… (now a virtual bargain at $79.99!)

I saw a theme emerging. Something smelled very fishy indeed.  I did some more searching and found  Osteotab

It was probably a mistake on my part. But at that point I left the whole business behind me, thinking it was small scale and well, that it wasn't really my problem. Surely some other people would come along and blow the whistle on these guys?

Then yesterday, when I got started again on the theme of false miracle cures for a completely unrelated reason, I found all these sites still happily operating. I also found this!

 

 

Oh no, they Di-n't!!      (Oh yes. They did!)

...and after that, I went completely mad on Google using all sorts of combinations of keywords and search strings. I hit the motherlode!  I have summarized and collated the data.  The list is at the end of this piece with links and all that good stuff.  If you check it out, you will see the evidence is indisputable: Oslo Health Solutions are total rip-off artists.  What makes me so mad is the scale of the operation, as well as the people targeted. Most of the conditions they claim to "treat" are chronic and incurable. many cause serious pain, disability or death.  Talk about preying on the desperate!

Even worse, some of the conditions they claim to "treat" are progressive, dangerous, cancerous  or pre-cancerous. I don't think anyone would be stupid or desperate enough to try one of these treatments in lieu of real medical help. At least I hope not! But then again, there may be desperate people out there with no insurance, who spend what little money they may have on acquiring false hope.

There are two primary templates used on these sites. The most-used by far is the vacant woman one as show previously.  

However there is another template, even more slick,  which I have dubbed the "laughing couple"  (aren't they lovely?)  template. 

 

Although this site looks completely different to the others mentioned so far, read the text: 

Peritab is a completely guaranteed and clinically proven herbal treatment for Peripheral Neuropathy.

It consists of a formulation consisting of purely natural ingredients based on the Unani (Greek) system of herbal medicine blended together in a specific proportion to fight and treat Peripheral Neuropathy effectively.

Thousands of patients have been successfully treated with Peritab over the past few years. Peritab is a completely outstanding product and there is absolutely no alternative to its unique formula. Had the effectiveness of Peritab not been proven beyond any doubt, it would not be possible for us to make such a bold claim.

The main ingredients of Peritab tablets are:

Magnesium Murakab
Zinc Murakab
Berberis aristate Ext
Egg Shell Calcium
Sulphur Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.

Treatment with Peritab is very rapid. Obvious results can be noticed within one month of use. A complete course of treatment lasts two months.

Peritab is taken in an oral pill form and the normal dosage is two tablets twice a day, mornings and evenings. There are absolutely no side effects and the treatment is safe and sold over the counter.

Peritab comes for a fixed price of $180.00 for a two months supply (240 Tablets) and can be ordered from our website. We do not charge any shipping price.

Treatment with Peritab is fully guaranteed. We are so confidant about the effectiveness of Peritab, that in the rare case you remain unsatisfied with the improvement in your condition, you may simply return the empty packaging along with the original receipt and claim a refund of the amount you paid us. The guarantee is valid for 120 days from the date of purchase. Since all payments are made via credit card directly to CCNOW (our credit card processing company), your money is completely safe. CCNOW will ensure that we honor all claims for refund. The only condition is that you have to be persistent in your treatment with Peritab for a complete course of the treatment. Skipping pills or being irregular will only delay the treatment.

If it sounds familiar, it is. It is exactly the same wording as for Syrotab, Amyltab, Osteotab, MD-Tab and several others, right down to the ingredients list. A straight cut-and paste job, with just  product name and pricing changed.

 

Proof of Cut and Paste: Check out the title of this "Thyrotab" about page. They forgot to rename it from "Psoriasis Tab"!

Although there is no company name or address listed on the Peritab site that I could find, the "Order Now" button gives it away

CCNow is an authorized retailer for OSLO HEALTH SOLUTIONS

Bastards.

Just to clarify, I think CCNOW is a legit operation, however they don't issue refunds without their client's approval. Their client is Oslo Health Solutions,-not the consumer.  

Do Oslo Health Solutions back up their promises?  Well, this person will never know. OHS never sent the Ptosotab that was paid for.

 

The next person actually received some bottles of pills (I must admit I was surprised to see this) but returned them and got no refund (quelle surprise!).

 

Another report; -this time for Sarcotab:

But what about the clinical research, I hear you ask?  They say there is some.

I didn't check absolutely every site for clinical research, and most of the ones I did check, had the very familiar "will be posted soon" message.  However, Vitiligo Tab (Vitiligo Tab is our 100% guaranteed and clinically proven permanent cure for Vitiligo.) has a research report attributed to Gaurang Clinic and Center for Ayurvedic research. 

I tried to cross reference this by searching Guarang's own site for the paper -I thought they would have it listed among their 49 other reports, but it wasn't. Curious.

Then I read the report. It seemed a bit low on actual research to my somewhat-trained eyes. There is a of information about Vitiglio itself , and some interesting if rather vague claims made.  But the information on the study itself and the findings thereof seemed somewhat hazy. They look great at first blush, but there were some things that seemed a little ...off.  First off, the study was not double-blind. There was no placebo.

Next, I noticed that the report uses a timeframe of 1996-2001. However, Vitiligo Tab -according to the site copyright- wasn't introduced until 2007. Was it in development for 19 years? (no wonder it is so expensive).  And finally, it doesn't say how the results were measured and over what timeframes.  It used terms like "cured" and "90% Improvement, but does not break it down into the different types or extent of vitiligo, which had been painstakingly outlined in the beginning of the paper. It looks like it does: -uses terms like "both sexes are equally affected by Vitiligo"  but it doesn't say how they genders are affected by Vitiligo Tab!  Hmmmm.  

 Psoriasis Tab was another with a research paper published from the same source (different attributed author) 

 

Again, if you read this paper, it is heavy on waffle and very light on actual research and concrete findings. And again, that paper it is not listed on Guarang's site.

I have mentioned a lot of "tabs" in this post, haven't I?  A lot of products called something-or-other-Tab that claims to treat  well... something-or-other?  Do you want to know how many I found?  Almost 50 (forgot to put clustotab on the list). And I don't think I have found them all. Some have been discontinued (like cardiotab) but have left footprints around the web, showing that they *used* to exist. Oslo Health Solution have around 284 domains registered, so I am guessing there are other um.. products out there that I haven't found yet. Anyhoo,  have a little look at this list. It is in alphabetical order. Check the links and see for yourself if you come to the same conclusion that I did. That these people -Oslo Health Systems (formerly Botanical Sources) are total rip-off artists.

Here it is: The Grand List of Oslo Health System's (and related sites) "completely guaranteed and clinically proven" herbal treatments

Blastotab

Product	Condition	*Formulation #	Price	Duration of supply
Absotab	Skin Abscess	10	$79.99	One month
Amylotab	Cutaneous Amyloidosis.	1	$79.99 (was $290.00)	One month
Anemia Tab	Anemia	Not listed	$89.99	Two month
Archotab	Arachnoid Cysts	2	$79.99	Two month
Ascotab	Ascites	2	$79.99	Two month
Atrophtab	Multiple System Atrophy	2	$79.99	Two month
Ameloblastoma	2	$79.99	Two month
Chordotab	Chordoma	2	$79.99	Two month
Clearotab	Dark Circles and Bags Under Eyes	1	$79.99	One month
Cronkatab	Cronkhite-Canada Syndrome	2	$79.99	Two month
dentotab	Teething!	2	$79.99	Two month
Emphotab	Emphysema	6	$79.99	Two month
Fascitab	Muscular Fasciculation	2	$79.99	Two month
Guillatab	Guillain-Barre Syndrome	1	$79.99	One month
Hornotab	Horner's Syndrome	2	$79.99	Two month
Lennotab	Lenox Gastaut Syndrome	2	$79.99	Two month
Leukotab	Leukemia	13	$79.99	One month
MD Tab	Muscular Dystrophy	1	$79.99	One month
meglatab	Megaloblastic Anemia	2	$79.99	Two month
MG Tab	Myasthenia Gravis.	8	$59.99	Two month
Myeloditab	Myelodysplastic Syndromes	2	$79.99	Two month
Osteotab	osteomyelitis	1	$180	Two month
Parkotab	Parkinson's disease	5	$79.99	Two month
Peniatab	Idiopathic Thrombocytopenic Purpura	3	$160.00	Two month
peptotab	Peptic Ulcer Disease	4	$180.00	Two month
Periotab	Periodontitis	10	$160.00	One month
Peritab	Peripheral Neuropathy.	1	$180	Two Months
Picknotab	Pick's Disease	11	$230.00	One month
pp-tab	Post-polio syndrome	1	$79.99	One month
prismatab	Benign Essential Blepharospasm	2	$79.99	Two month
Pseudotab	Pseudotumor Cerebri	2	$79.99	Two month
Psoriasis tab	Psoriasis	Not listed	$139.99	Six week
Ptosotab	Ptosis of Eyelid	9	$79.99	One month
Raynotab	Raynaud's Disease	1	$79.99	One month
Sarcotab	Soft Tissue Sarcomas	5	$79.99	One month
Sclerotab	Scleroderma	1	$79.99	One month
Sightotab	Age-related Macular Degeneration	9	$79.99	One month
Syrotab	Syringomyelia	1	Now $79.95 (was $230.00)	One month
Thyrotab	Thyroid Nodules	7	$79.99	Two month
Ticknotab	Tick Bite (?)	12	$190.00	Two month
Tonsotab	Enlarged Tonsils	2	$79.99	Two month
Tortitab	Spasmodic Torticollis	2	$79.99	Two month
Trematab	Benign Essential Tremor	2	$79.99	Two month
Vertigo Tab	Vertigo	Not Listed	$49.00	One Month
Vitiligo Tab	Vitiligo	Not Listed
welnatab	Kugelberg-Welander disease (SMA Type III)	2	$79.99	Two month
Wiskotab	Wiskott Aldrich Syndrome	2	$79.99	Two month

*I have figured out that Oslo Health Solutions and their affiliates use around 13 different formulations to "treat"  over 60 different diverse ailments. I will discuss these in Part II.

Stay tuned.

Enter #29, Stage Left Field

I sorta lost hope after the last new doctor, which was officially #28 but really #30 on the list. I had hoped she would be able to help me, or at least have some interest or curiosity to do so. But she was relieved, not challenged when I told her that 29 other doctors had failed before her. "At least I am not alone" was what she said.

And I wanted to scream at her: "But I AM!!!. I am totally alone in this and how many disbelieving and uncaring fecking doctors do I have to see before someone will actually come up with something?"

But I kept my mouth shut, instead settling for a stern raised-eyebrow-hard-stare combination.

I don't think anyone who hasn't lived something like this can really, truly understand how very alone and isolated one feels.   Despite repeated arduous searches, I have not met one single person who seems to have symptoms which are related to mine.

I really started to despair. I started to wonder if maybe it really IS all in my head, and if so, I should just go to a shrink and get some Happy Pills (and hope for none of the hideous side-effects for which I am famous)? I didn't think Happy Pills would make the fits go away (because still in my heart of hearts I know the fits have a physiological basis), but maybe I would care about them less?  Maybe the Happy Pills would somehow inure me to the awful horror of numerous potential seizures a day?

...For the rest of my life????

I even wrote an e-mail to my sister, expressing my doubts and saying I might as well give up. The next day, there was a mail in my inbox; something along the lines of "It is NOT all in your head. EDS III is causing your seizures."

And this e-mail wasn't from my sister! Intriguing...

I wondered briefly if the sender, who I didn't recognize, might be a nutjob? But then I read the message, and realized that the sender was a doctor; a real live educated in the USA doctor of medicine, (I checked!) who had happened across this blog and wanted to help me.

So that is how #29 came into my life out of left field -actually out of state (which is a bit of a shame!), and we have been in quite animated communication since then.  She arrived in the nick of time, too -just when I was about to give up entirely. 

I need to come up with a better name than "#29" so I have decided that this lady, who is engaged and genuinely curious to unravel the mystery that is OSM, Will be known as Dr Curious from hereon in.  By "Curious", I mean someone who has curiosity -not someone who is a curiosity, although it could be argued by unkind people that a curious doctor is a curiosity in itself... But I don't wish to be unkind tonight.

...except I just was.  (you can't always get what you want)

So Dr Curious has been reading old records, asking lots of questions and making some suggestions. She does have something of an ulterior motive. She has a relative who has similar symptoms to mine. By pooling our resources; i.e. combining my copious history of tests and failed treatments with her medical knowledge, we are hoping to find an answer for all of us.

So in one e-mail I discover that:

• I am not the only one. There is at least one other like me out there.
• There is a doctor out there who is genuinely interested in getting to the bottom of this and helping us.

It's amazing the difference a day makes. It truly is.

Is It Time?

I am overdue a personal update, for those of you who follow this blog to keep tabs on my progress.
So here goes, with my apologies:

Last week was some week. I had booked the nuclear stress test and the new endocrinologist (#28) for the same day: Tuesday.

On Monday, Himself woke me early. "I think I have a kidney stone. I'm going to the ER"

OK, so I got up and ready, threw the kids on the bus and then, after making a cup of tea (priorities) I went over there to see how he was doing. Yep. It was a kidney stone. They eventually released him with a prescription for some good pain drugs (and how come he gets the good drugs?  I have a chronic pain condition and all I get are NSAIDs and sympathy (OK that question is to be funny -I know why and that's OK)) and instructions to follow up with his urologist.  He made the appointment for the next day.

So on Tuesday, off I went for me stress test. I am now officially "hot" by the way, I have a little thingy to bring with me to airports to tell them I have recently been injected with a radioactive substance. The test went OK -I think.  I don't have the results yet. I felt kind of dizzy afterwards and had to be sat down and fed juice (I told them it was low blood sugar, actually it was IT -that thing which gets me, but they can't help IT, while they can feel better by treating hypoglycemia). The juice did help, in fairness.

So after taking a break to ensure I wasn't going to seize, I headed off to meet a new doctor: now known herein as #28, until I can come up with a better nickname. She is a little skinny woman aho purports to specialize in adrenal diseases, but seemed ...unimaginative. She was very critical of #10's testing methodologies (#25 had been critical of them too, which is why I sought another endo opinion) but she didn't seem to really want to run a comprehensive set of tests for herself (hmmm). She ordered ONE test, and a CT scan to check on the lump on my left adrenal gland (which I said I wasn't going to go ahead with anyway, since I just got blasted with a goodish amount of radiation)

I was in the office with #28 when my cellphone rang. I shamelessly answered it. (I have special needs kids. I ignore the 'turn off cellphone signs' in doctor offices). It was Himself: "He wants to admit me. Will you be able to drop me off at the hospital?"  So I booked out of there as fast as I reasonably could (and subsequently thought of a million things I hadn't told her and points I had failed to make). I drove back home, collected Himself,  dropped him off at the ER (as instructed) and then went back to collect the kids off the bus.  Tuesday was an eventful day.

Himself was in for two nights. He is back now, and doing fine.

But the thing which got me and has me thinking was something the new endo said: She suggested I go to The Mayo clinic.  My own PCP (#2) has been at me to go there or to the Cleveland Clinic for months. and I am wondering if it is actually time? I have asked #25 for a referral to the undiagnosed program at the NIH, but that was not granted. I asked #28 about this, and she said something like "it has to be something really severe" I guess having fits up to three times a day, after eating or exercise and having horrible reactions to anti-epileptic (and other) drugs is NOT considered serious?  Well, in that case, I feel really sorry for other undiagnosed people who have more serious conditions than I. They are welcome to my place (I feel entitled. I do...) on that program and I wish them luck...

And I was wondering when does a girl know it is time to go to somewhere like Cleveland or Mayo? Honestly, the thought scares me, not just because of the expense -even if the visits were covered by insurance; the travel, food and accommodation would not be.

With all my mental meanderings on the subject, I had words from my favorite poem wandering around my head.


There will be time, there will be time
To prepare a face to meet the faces that you meet;

That's the other thing, I would be alone there. And although I am a big girl, I also know that it helps a lot to have someone you trust along for things like this. The other person can provide company and ask additional questions, take notes and then afterwards, tell me what happened, because I am likely to forget a lot -my short-term memory is not the best, especially if I am actively seizing.

There will be time to murder and create,
And time for all the works and days of hands
That lift and drop a question on your plate;                               

Like, what if I am incapacitated for any reason (even for a short time), say by a drug reaction?

Time for you and time for me,
And time yet for a hundred indecisions
And for a hundred visions and revisions
Before the taking of a toast and tea.

But I think I am out of other options. Out of visions and revisions.  #28 was the last hope.

  And indeed there will be time
To wonder, "Do I dare?" and, "Do I dare?"
Time to turn back and descend the stair,
With a bald spot in the middle of my hair—       

...and like Prufrock, I am afraid.  But unlike him. I am going to pluck up the courage and go for it.

Eventually.

But I think I need help finding my big-girl pants for this one. As for the funds;  ...well, I'm sure I will find them from somewhere.

It's courage I lack.

P.S. The poetry in this piece was excerpted  from "The Love song Of J. Alfred Prufrock, By T.S. Eliot, which rocks the yard, BTW -even if the author was a seriously messed-up pervert. (OK that's my personal theory and not one widely held)

Setback

And I thought things were going so well.

My blood pressure has been on rather a roller coaster.  When I had the flu, it was 90/52 even with Florinef.  I saw #25 on Monday, and my BP was 150/100.  That was when I realized that the stupid BP monitor I have at home isn't working properly. It is measuring low. Like at least 20 points on both numbers low.

And #25 gave me a severe bollocking for taking Florinef "despite high BP"  (although I did explain that at the cardiologist's last week, it was normal before, during and after the stress test).  He also said that according to his records, my BP runs high.  Most of my other doctors (and I have several) tell me it runs low. I don't know why #25 sees this discrepancy. Either #25 needs a new BP cuff, or my BP gets higher later in the day -#25 usually sees patients late in the evening. whereas most of my other doctor appointments are earlier in the day. Of course, if I had a BP cuff that worked, I could test this theory.

Oh and #25 was very skeptical when I told him the Florinef helped my fits. He acted like it was a placebo effect (at best). I told him "just because you can't see the connection doesn't mean it is not there or that it is not real".  That endeared me to him, I'm sure. Well sorry, #25, I am your patient, not your friend, and you are supposed to be providing a service for which you are paid: i.e. getting me well. It has been over a year and I have just gotten worse.

I am very, very tired of this.

So the next day, when My BP was still apparently high (no way to accurately measure this, but if the size of my ankles was anything to go by, it was HIGH -I could have given a Grand Piano a run for it's money. Thank goodness it is winter), I decided to stop the Florinef.

It is now day 2 and my blood pressure has not gone down.  I am very confused. I don't know what is going on.  My foot is numb again, but I have not had any more seizures.   Yet.

I'm sure they are in the mail.

Rules, Damn Rules and Statistics

I have been thinking about rules a lot recently. I live in a house with two ASD kids, so rules are a big part of my home life. Here are examples of some of the more colorful rules we have had in the past:

• We keep our shoes and clothes on in restaurants.

• No rocks in the house

• We don't growl at friends (or at anybody).

• We don't lick Mom

• No sniffing the Dominos man (it really freaks him out!)

• No feet on the dog

• We wear clothes and shoes when we go outside.

Most rules are good. Most rules are sensible and designed to help in some way. We don't put our feet on the dog or he might bite us. We wear shoes and clothes outside so we don't freeze to death, don't cut our feet and don't freak out the neighbors. Rules created with thought and purpose are good.

In diagnostic medicine there are a lot of good commonsense Rules. If a person arrives into the ER complaining that their knees hurt, there is no point in giving them a chest x-ray.  You know, stuff like that.

Damn Rules, however are another story. Damn rules are arbitrary and seem to have little logic or purpose. Damn Rules are rampant in diagnostic medicine.

I remember when Grace was about 9 months old, I took her to the doctor.  She was vomiting with a fever. It was my second trip to the pediatrician's that week. I had been there a few days earlier with a feverish, vomiting Joe, who was about 2½ at the time. They had tested Joe for Strep, it was positive. Antibiotics. Done.

I figured it was only a matter of time before Grace got Strep too -those guys were complete germ factories. So as soon as she threw up, I took her to the pediatrician's office.

The Pediatrician walked in to see Grace.  "What's the problem?" he asked before he was through the door.

"She has a fever and she vomited. Her brother has strep, so I thou..." He interrupted me quite brusquely "It's not strep" he said in a very finite way.  He had barely looked at her, hadn't laid a hand on her. What is this? I thought to myself Psychic Medicine?
"How do you know?" I asked, agog.
"Babies under one don't get Strep." he said, dismissively.  "It's probably a virus"
"...But  ....but her brother has Strep and she has the exact same symptoms."
"It doesn't matter. Babies under one don't get strep"

He started to examine Grace, while I pondered this statement. Finally I asked a question that was bothering me.
"How does the strep know?"
He was confused: "What?"
"How does the streptococcus bacteria know how old she is?  How does it test her age (and why does it care)?"  How can it tell the difference between an 11 month old  baby and a 12 month old one?

He looked at me for a minute. spluttered, stopped, looked at the child then asked "what does she weigh?" I told him.  He muttered something very grudging about being big for her age and tested her for Strep. And what do you know? It was positive!  He acted AMAZED.  "But babies under one don't get Strep!"  I struggled not to shout at him.

And afterwards I thought and thought about this and I figured maybe that Damn Rule  was almost true 50 or 100 years ago, when kids were smaller and less well nourished, but not today.

When I took Grace for her follow-up to be sure the Strep was gone, I saw a different doc in the practice.  "Oh! She had strep? and she is  ...what?  ...9 months old?  Wow! I wouldn't even have tested her! Babies under one don't get Strep, you know...". I indicated Grace with a flourish of my hypermobile wrist: "Exhibit A" I said with heavy irony

I think she missed the irony.

You know, it's funny, I never read the paper about the stunning case of Grace-the-nine-month-old-baby-with-Strep in any of the on-line research I have done over the years. 

Sorry. That irony just keeps coming back.

There are many rules like that in medicine. Rules which rely on arbitrary formulas and measurements without looking at changes in the trends or other factors. -Damn Rules, as I like to call them.  In our example, Grace had a sibling with Strep (which is highly contagious) and had the exact same symptoms, but these factors  were completely ignored in favor of a Damn Rule with no real logic behind it. It wasn't until I went all Mr Spock on the guy and challenged the logic that she was tested (but I am sure many mothers would not have dared to challenge the doctor, which thought scares me). I still don't know how the Streptococcus bacteria knows the weight of the child, BTW  -or why it cares!

There are many examples of Damn Rules in medicine, and I have seen many people refused treatment -i.e. hurt because of these Damn Rules (hello Hippocratic Oath?). 

Some of the Damn Rules I have encountered recently:

• A brain herniation of <5mm is not a Chiari Malformation (regardless of symptoms)
• A Small syrinx does not cause symptoms (said to a blatantly symptomatic person with a small syrinx)
  And my personal favorite:
• He makes eye contact, so he cannot be on the Autistic Spectrum.

In addition to -and conjunction with- Damn Rules, Statistics is another diagnostic tool which has absolutely no bearing on symptoms or circumstance and yet, like Damn Rules, Statistics are often taken into account and indeed used to rule stuff out before symptoms or circumstance are considered.

How many times have I been told that I can't have an illness -say Ehlers-Danlos Syndrome, because it is "rare"?  There seems to be some kind of blinders set up in the medical world, some unwritten Damn Rules that go along with Statistics. I think they read something like this:

• "Rare" is actually another word for "mythical" or "non-existent"
• Even if it exists, I, Dr. OfSickMother cannot possibly have a patient with a rare disease in my care because:

• Nothing interesting ever happens to me
• It is too scary a prospect for me to handle

The problems with this thinking -with using Statistics as a diagnostic tool at all; is that it becomes self-perpetuating. So-called "rare" disease and conditions remain undiagnosed or labeled psychosomatic because they are "rare". This causes the incidence rate for psychosomatic illness to rise in the Statistics because so many people with "rare" illnesses end up in that bin. With the rise of these (usually unqualified) psychological diagnoses in the statistics, the relative incidence of real "rare" diseases fall...  Rinse and repeat.

It's enough to make me sick. 

Oops. Too late!

Two Huge Revelations

Yesterday, I finally realized something huge:  The Florinef seems to be going a long way towards controlling my seizures. I think I finally got the dosage right on Saturday. I felt good that day until almost midnight, when I had a massive seizure.  This seizure had kind of come up suddenly, with none of the usual triggers and I wondered in my head if it was the medication wearing off? 

The next day, I took the same dose and I felt good until about 3:30pm and again: I felt awful and I knew it was a prodrome. Sure enough: Two huge fits ensued.  I wondered if the medication was wearing off, and this was why I was seizing like that?

I am supposed to take this medication only once a day. However, on Monday, I thought I would try something different, when Himself was going to be home. I took the same dosage in the morning. Then at 2:30-ish I started to feel crappy again, like the med was wearing off. I took another half a pill, taking me up to the full dosage the doc had recommended.  I beavered away at the computer, hoping to get some research in before the seizure came.

It never came. I realized a while later that I was starting to feel well again.

WOW!

I mean, really: I have tried all sorts of things to stave off a seizure in the past: eating, drinking,  fasting, salt, sugar, exercise, laying still, taking anti-epileptic drugs, even Excedrin Migraine (when Migraine was the working theory). Nothing worked. NOTHING.

Until yesterday.

Now some people might say I was naughty to mess with my meds, and normally I would agree. However I searched the Internet high and low for some kind of information on Florinef or Aldosterone (the hormone which Florinef replaces) and seizures, convulsions or epilepsy. Nothing. I searched for information on Addison's disease (the closest searchable condition I could come up with that related to Aldosterone deficiency) and seizures, convulsion or  epilepsy.  Again, nothing. So I figured this situation is pretty much unprecedented. I could have called the endo or the neuro, but they wouldn't have a clue. So  I chose to listen to my body.

Sometime after 4pm, I had figured out the Florinef had definitely staved off the attack. I kept searching the Internet for possible reasons why and coming up empty again and again.

I hit bottom.

I started to lose the conviction that had kept me going thus far. I started to thank that maybe it *was* just a very elaborate placebo effect. I was starting to wonder for the first time in 2½ years if I might actually be going mad? I didn't in my heart think "mad" really explained all my symptoms. I don't suffer with anxiety, like most people with psychologically based seizures do.  But maybe I was a particularly clever and elaborate madwoman? Maybe I don't even know I was anxious (at specific times of day and after meals) and that anxiety was causing the seizure, as the "experts" (who spent less than an hour with me) have suggested?  And I didn't feel mad ...but I think people usually don't if they are truly insane. 

I was really starting to question ... everything.

Then, in the midst of my increasingly frantic searching of th Internet and questioning of myself,  I noticed a new person had commented here on OSM. At 4:32pm Tara had left a very nice comment. I wandered over to her blog (the other one) to have a little look at it.  Tara has a beautiful daughter with special needs. I  clicked on the link to Chloe's background story and read it. I froze when I read this paragraph:

"A Google search quickly made me realize that Infantile Spasms, aka I.S. or West Syndrome, is a very BIG deal. I read that 90% of babies with I.S. end up with mental retardation and they have a 60% higher mortality rate before the age of 10. The medication used to treat it, ACTH, cost $20,000 a vial..."

Hang on: ACTH isn't a seizure medication! I know them all. In fact, from all the research I had done in just the past few days, I recognized the name ACTH immediately. It is the hormone the body produces to stimulate the adrenal glands, which in turn produce cortisol and...

you guessed it: Aldosterone. 

The stuff I am virtually missing that the Florinef is replacing.

WOW!  Talk about a bombshell!  I was stunned!

OK ACTH does not directly produce aldosterone, but that close relationship is more than a coincidence. it has to be!

I did some searching on West Syndrome. West Syndrome -by it's very existence, proves that there can be a link between seizures and adrenal hormones. I missed it because I wasn't searching on ACTH.  Unfortunately, when I researched a little further, I realized that this particular therapy has only been researched in young children.  Not in adults at all.

I guess "they" don't think a hormone deficiency can cause seizures in adults. Therefore I suppose all the other adults who might have this have been chucked into the "psychosomatic" bin by their doctors.

How glad am I that I refused to be placed in that bin?  And how glad am I that Tara happened by this blog, virtually in the very hour that I was starting to give up hope, and she (totally inadvertently) provided me with the clue that inspired me to keep going?

Very glad. Wordlessly glad.

Now, I don't know if this Florinef thing is the ultimate answer for me. For one thing, it seems to have a HUGE rebound effect. When it wears off, I start to feel unwell pretty quickly. I get the weird "sunglasses" headache, my foot goes numb and I start to feel awful. The seizures, when they hit, are WAY worse than my regular seizures. They last longer and are more intense.

And an aldosterone imbalance doesn't seem to explain a lot of other stuff, either: It does explain the meds reactions.  But it might explain some of the vitamin deficiencies. But I feel this is a HUGE step in the right direction. I guess I need to do a lot more research and speak to more doctors.   I have a few key appointments lined up in the next few weeks.

Interesting stuff, eh?  I will keep you guys updated.

Pushing Boundaries

This is  phrase you hear a lot as a parent: "Oh he's just pushing boundaries. He is trying to see what he can get away with".  And often it is true. But sometimes it is something else. Like Autism.

This is not a parenting post. This is a me post.  Again. Sorry, but it's my blog and I'll self-indulge if I want to.

So yeah. I started this Florinef thing less than a week ago in an attempt to address me low aldosterone issue. Florinef is basically a synthetic form of the hormone, so it should be the right tool for the job, right?  I thought so too.

But I have been very up-and-down since starting this medication. Now, it's not all the Florinef's fault. Mostly it is my own fault. First off, me and my short-term memory screwed up.  I was told to start on a half a pill taken in the morning, and I started on one pill taken at night (Why I don't write this stuff down is beyond me. OK I expected it to be on the pill bottle and it wasn't. Lesson learned.)  Ugh! Can you say INSOMNIA? And thirst? And a few other things (headache)?  So I called the doc and got that sorted out. I waited 36 hours between doses and took a half a pill in the morning. I was OK. However, the NEXT morning (yesterday) I was very NOT OK.  Very, very not OK.  As in almost went to the ER not OK. And that lasted pretty much all day.

I think this stuff has a long half-life. 

And now -per doctor's orders- I am up to a full pill in the morning. I guess I should wait till tomorrow to see how I feel on that.

Yes, I should wait.

But I didn't wait.  I was pushing boundaries today; -even after the day I had yesterday. I ate breakfast just to see what would happen. Would I have a seizure? Woudl I fall asleep uncontrollably?

Now, yesterday I ate breakfast and was effectively felled for the rest of the day. And it is the definition of madness to do the same thing and expect  a different result, right? But I did it anyway and GOT a different result. I ate breakfast and I felt OK. Result!

And if that weren't enough, I decided to push ANOTHER boundary. I ate lunch. I was a little thirsty (very thirsty is much more common), a little salt-cravy, but nothing major. No seizure.

Wow.

I realized I was really pushing my luck so I stopped experimenting for today.

And then I got to thinking about pushing boundaries: When you are sick, you push boundaries all the time. Every day, you push to see if you can still do X or still not do Y. And if you find it s a "good" day and you can maybe do both X and Y, you don't settle for that. You push harder. You go for the next thing (which I assume is Z!), trying to find the limitations of your limitations for that day, because they often change. And that's one of the most frustrating things about this whole illness business:

The inconsistency.

Because if every day was a known quantity, like it usually is for unsick people, you can plan. You will know the parameters to set, and you can go with those.

...and just realized I have just come full circle back to my "commitments" post.

Time to stop!

Fear Of Commitment

I never thought I had a fear of commitment. I raced into marriage with someone I had only known nine weeks (it lasted four years). Not satisfied with one dumb move, I ran off to New York with Himself, who I had only known a few months at the time (that was 15 years ago). I never thought I had any fear of commitment.

Until it came time to buy a house. I remember the day we signed the deal: Me, pregnant with my second child (no fear of that commitment!), standing frozen in my boss's office, contemplating flying back to Ireland and changing my name while she -wise woman that she is- tried to talk me down off a virtual ledge.

"What exactly is the problem? Is it the money?"
"No.  Yes. No.  ...I don't think that's it.  It's just such a lot of TIME. I mean... Thirty YEARS!"
"But you can pay it off early."
"I know, but I will still be in the same place. What if I don't like living there?"
"Ah.  ...Well, you don't have to stay the whole time. You can sell the place and move, you know."
"But we will be stuck at first. Closing costs and all that..."
"But not for that long. How does five years sound?"
That still sounded like quite a long time. I had moved 14 times in the previous 10 years. I wasn't used to staying in one place. I can't remember if I said this, of if she saw my face.
"...however your closing costs should be covered after three. Can you do three years?"
I could.
I left a lot calmer and I left to buy my house.

That was over nine years ago and I still live here.

My boss very deftly figured out the root of my problem; -that I didn't want to be tied to one location and she talked me around it to a solution I could live with. I am very grateful to her for that. I don't think I ever told her.

So fear of commitment is not always about marriage and relationships. I learned that the best way I learn:  By living it.

Since getting ill, I have a new fear of commitment. Actually it is more a fear of commitments.

You know, social ones. And community ones.

It centers around the fact that I cannot plan things easily, or I have to plan what to do if I can't make it. When you have a chronic illness and a seizure disorder, ...well, you simply can't earmark every Wednesday to volunteer at the school.  There may be some Wednesdays that it is simply not possible or safe to go.  And then people are let down. The same goes for almost anything that is planned in advance. There is that fear that on the day I may be ill. Then I face a dilemma: Do I go anyway, in pain, unwell or potentially seizurey? Or do I duck out at the last minute, letting people down? Actually, people are let down either way. Therefore I just don't make plans in the first place. I don't like to take that risk with other people.

So I don't make plans or commitments if I can possibly help it. Instead I am quite good at the spur-of the moment "seize the day" type stuff: Hey! I don't feel awful right now! Let's go out! Let's call our friends!

But of course, our friends all have plans...