Why Do People Expect Doctor's To Remember Them?

If you have read any of my previous entries - I think my readership is still 0 - you know I belong to the long-tail. You would think that my doctors would remember me. Well, they do remember some things - the toilet tank incident seems to have caused an impression - but I know they see 100s of patients as well as deal with all kinds of bureaucratic issues. Why on earth would I expect them to be more responsible for my health than I am?

Now, I am not saying that there aren't times that doctors have been, well, just plain incompetent. And sometimes that has been inexcusable. What is the purpose of wearing a Medic Alert charm if nobody actually follows the instructions? Rather, I've noticed that many of the women in the IVF world are surprised by what I call the mundane idiocy of the medical world.

What do I mean? Oh, labs losing results. I know it is stressful and scary and you shouldn't have to bird dog the lab, but guess what, never assume competence. I have learned this the hard way. You need to tell everyone multiple times that such and such is necessary and that it was done. Do not expect that anyone else will do it. If you are very, very lucky, your husband might help with a few things - but he will whine throughout.

I find it rather annoying to hear people complain about medicines being messed up or the wrong chart being in front of the nurse if they didn't check. I check - sometimes obviously, sometimes not obviously. I know that I cannot trust medical personnel. It isn't their fault. They are human beings with all the foibles that entails.

Human beings are wonderful failures and successes all rolled into one. It never amazes me that someone who you have given up on can suddenly be your savior - while the best resource you have ever had can suddenly turn sour. We are used to it in other areas of our lives, but really, we don't expect it amongst medical personnel?

Since I know I am prone to days when my brain does not work all that well, I know that even physicians and nurses have those days. Medical personnel - despite their self-promotion - are not godlings. They are just people, like all the people you know.

Now, please, don't make the mistake of thinking I'm being casual about medical mistakes, I'm not. I am just saying that perfection belongs only to God, and man is not God - no matter what some may say. If you are seeing true incompetence, leave. But if you are seeing problems well within the normal failure rate for any activity, don't fly off the handle. If I flew off the handle every time some doctor tried to (inadvertently) kill me through prescribing a drug I'm allergic to (ingested alcohol is in everything, it seems, as is corn), I'd never see any doctor at all - not even the dentist!

Food Allergy is Hell, Infertility is Purgatory

I'm (un)lucky enough to deal with both. Why do I say allergy is hell and infertility is just purgatory?

Having food, environmental, and drug allergies I have lived with one of the most misunderstood chronic diseases which everyone thinks they understand. I'm in the category that most allergists don't even see. Oh, in the larger practices - or in research settings - you get a few like me, but most people are dealing with run-of-the-mill hay fever or eczema. Anaphylaxis is usually from bug stings. Or the food allergies that are dangerous are all in the top 8. (Ok, if you are a real allergist or food allergy sufferer you are rolling your eyes because you know that ALL food allergy can turn deadly quite suddenly.)

You see, what makes me somewhat unique is that with my true IgE mediated food allergy, I truly never get time when it isn't in my mind. I live under the constant threat of death from a wrong turn - literally. I could walk into a place, and if I'm very unlucky, react so quickly to aerosolized food particles that I would be dead before I knew it. And too many people do not understand this simple fact.

Infertility, on the other hand, has a level of choice that, no matter how hard, allergy just doesn't. Now, I am in no way saying infertility has not devastated me in ways allergy could not. When I got the initial infertility diagnosis I was more than devastated, I fell into a deep situational depression from which I am not really certain I have recovered. That's why I started this (semi-)anonymous blog. To move through some of these emotions that I haven't got anyone to talk to about. There are a small percentage of women I have run into on the boards who deal with allergy - but I don't know any who have the same issues I have. (I wouldn't expect to find any.)

Now, in contrast, when I received my diagnosis of allergy at 20 - yes, it took that long - I felt like the world was lifted from my shoulders. I had answers for why I always felt awful. If I did not eat this list of things, did not take these drugs, and did remember to always have antihistamine in my system - Seldane-D to Claritin-D - I would feel good. I nearly flunked out of my freshman year in college due to being sick from allergy. I had terrible menstrual agony - not just pain, agony - due to allergy.

The allergy diagnosis did change a lot of things. I found out that I could no longer trust anyone until they were thoroughly vetted. Not doctors. Not nurses. Not family. Not friends. Not employers. Doctors would prescribe things that I am allergic to and claim it was not possible to be allergic to that. Friends no longer wanted to be with me because I could not go to certain restaurants (soy, rice, corn), go to the movies (popcorn), go shopping at certain times. Even work became a problem. I actually had to file an ADA complaint at one place of employment. Trust me, this is not a fun process. But if you can literally die, well, what option do you have?

Emotionally infertility kills. Literally allergy kills.

There are a plethora of studies showing how the depression around infertility is similar to that around cancer. Personally, I believe it is because infertility is a kind of death. I may tackle that issue in a later post - but it isn't imminent danger of death. There are other options in many cases to pass on your history - sometimes even a piece of your genetics.

There are also a plethora of studies done internationally showing that the majority of doctors - especially Emergency Room (ER) doctors do not treat anaphylaxis (aka, allergic shock) properly. A Harvard Allergist recently came out about this. There is only one recommended course of treatment that is only contraindicated in very specific circumstances. Intramuscular epinephrine followed with a course of steroids and H1 (benadryl) and H2 (pepcid) inhibitors. If the patient does not receive this treatment, even if the patient recovers in the ER, the patient can have a secondary even more dangerous reaction. And yet, most medical personnel do not take allergy seriously.

Now, those dealing with infertility know that short shrift is given to the signs of infertility in many women. Most of us had a gut feeling something was amiss before we could get a referral to an RE. Imagine trying to vet an RE who was also qualified to deal with the hyper allergic infertile patient? There won't be too many who understand the dangers involved.

Now, take a moment and think about dealing day-in and day-out with a disease that just plain acts weird but can kill at any moment. Even those with very real IgE allergy can get away with occasionally being exposed to the allergen with no significant reaction, then suddenly have a severe reaction. This makes some physicians dismiss all allergy. Immunologists have a theory known as "bucket theory" to deal with this - the more stressors, including allergens, the patient is dealing with, the more likely a severe reaction is to occur.

Infertility is socially isolating in one way - the need for people to talk about children. The co-worker who insists on talking about his child when you want to go to work to not have to think about that problem (infertility) is very real. Avoiding baby intensive events is another reason. Infertility's isolation is nothing compared to having a food allergy.

A study was done among all different kinds of chronic illnesses - food allergy was found to be the single most socially isolating disease there is. Everything in every society revolves around food. Everything does not revolve around children - even though it feels that way when dealing with infertility.

When my allergies got worse, I literally had people tell me they could not be my friend because I could not go out to eat with them. My social circle got much smaller - but they also, I feel, are of a much higher quality. The only relationship I lost due to infertility is my brother and his wife - but that was probably gone well before this. I will probably write an entry about that in the future. I really believe that relationship died due to food allergy as well.

I do not want to be defined by either allergy or infertility - but I am. I am the allergic girl. Everyone knows me as the person allergic to half the universe. There are people who think it is so funny to say stuff about popcorn popping or some other item since it is so alien to them. They don't really understand that, in reality, they are threatening my life. I know the people in question don't understand what they are saying.

These people have never seen me involuntarily recoil in horror when I so much as see popcorn - the first reaction that almost left me dead. These people do not understand the utter despair and fear I sometimes feel because so much of life is permeated by a food that will kill me. Imagine being afraid to go into a gas station because they pop popcorn. I must use the "pay at the pump" option because of the popcorn popping in most gas stations. And yet people think it is a joke.

And then there are the people who question whether I should reproduce at all - not because of infertility. Rather because of my hyperactive immune system. Modern society doesn't have parasite problems, instead they have allergy. It is the anti-parasite subsystem of our immune system that causes IgE allergy.

Oh, and then there are the faux infertiles. The people who claim they had problems because it took them all of 6 months to get pregnant. Imagine the faux allergics who claim to have an allergy to steal recipes - something someone really does - leaving those of us with real allergies in danger of being lied to. And every person in the allergy community has been lied to by a food, or drug manufacturer, or a restaurant about ingredients. Or about how food is prepared. Why? Because some people think it is trendy.

Just as the magazines give people who are "pretend" infertile more space than the really infertile, they give the faux allergic space with a one line disclaimer.

Allergy has prepared for me for dealing with infertility. Oh, there is more, but that is for a later post.

Issue	Infertile	Allergic- especially food
Medical Community does not understand the disease well.	Yes, but getting better.	Yes, and getting worse.
Disease has clear, recognizable presentation.	Not immediately, and not ever for "unexplained."	Yes, but no one actually reads the symptom lists except for allergists and PCPs with patients like this.
Socially isolating?	Yes, it becomes too painful to be around kids before you heal, somewhat.	Yes, food allergy considered most socially isolating chronic illness due to the prevalence of food in all social activity. Friendships and other relationships invariably lost.
Medical Professionals "get" the disease.	More and more do.	Nope, unless you are lucky enough to find a really, really good doctor.

Trying to Start IVF

Ok, I know I shouldn't be surprised that I can't get off the ground running. It just seems like every time I turn around there is another obstacle.

First we had to go over several tests again. I had no objection since, it seemed, not one test had been accurate. Thankfully, nothing more was found. I did this in record-breaking time, and if I had had my appointment 4 days earlier, I could have started one month earlier than I did - due to the injection class.

Do I expect I am going to remember anything once I start the injections? Nope. My memory is a sieve. Has been for quite some time. I have got to learn to pay closer attention. I was just too happy that the actual needle was no bigger than an allergy shot needle! I couldn't get past that point.

Now it needs to be said, that IVF has only a 20% success rate. That is an 80% failure rate. Of everyone, I am the least confident of this working.

Well, we try to start and I have a cyst on each ovary plus my E2 is 59. With cysts this is a bad number. Follicle growth, according to one literature survey I found, is almost always unsuccessful in these cases. Well, I don't tolerate birth control pills (BCPs) very well.

What do I mean by "not tolerating BCPs"? You know how most women take them to help with painful periods? Well, if I take them - and I tried 3 different types - I get the most excruciating cramps imaginable. I cannot walk. I fall down on all fours in pain. Obviously, we want to try and avoid that if at all possible.

So, considering my history, the RE wants to wait a cycle.

The next cycle comes. There are more cysts or follicles: 30 and 20 on right; 17 and 14 on left. The nurse said something about there being some smaller follicles as well. My E2 is only 51, but they decide to put me on BCPs.

I remind the nurse about my issue with BCPs. The RE on call decides that it would be best to give me a progesterone only BCP. It comes with mood swings.

That is where I am at now. Let's hope that the BCPs don't cause pain and quiet my ovaries. It is going to be a long cycle.

Who Am I? How Did I Get Here? Part III The Surgery

My mother came into town the day before surgery. Now, I have mixed feelings about this. A part of me wishes she would not have come with us to the surgery, and another part thinks she is right that my husband needed the support. My husband, it seems, did not expect to get news at the surgery.

Yes, my husband did not realize what DIAGNOSTIC SURGERY meant.

So, that morning, we had to be up at 3:00 AM to get to the hospital at 5:30 AM. The RE had fit me in due to the delay. Those of you familiar with fertility related laparascopy realize that it must happen during a particular set of time - after you bleed, but before you ovulate. I ovulate on the early side. We were not awake.

A little prehistory:

I had had trouble getting in to get my pregnancy blood test - yeah, infertility treatment and you have to prove you aren't pregnant. Problem was, I went to one of their centers with my order dated January 2006. Yep, the kind of thing that happens to all of us. From the previous posts, you can probably tell I was somewhat discombobulated and hadn't noticed this. It was the Saturday before the Tuesday I was to have my surgery. The computer system was down. The girl at the desk did not think to call. I was in no shape to think of this.

So, Monday morning rolls around and I call the office - they have me rush over to get the blood work done. I get there, they draw the blood.

The lab never reported the blood work. I had to try to pee to do a pregnancy test. I had not drunk anything since midnight the night before. There was nothing in my bladder. All things considered, the doctor believed me and my husband that between ER and doctor visits we hadn't managed to have s.ex for the entire month. (Trust me, you do not want sex right after anaphylaxis. It just ain't gonna happen.)

So, then the anesthesiologists asks if I have any allergies. To save time the RE hands her a copy of the printout I gave him at our first appointment. At least she knew enough to say: "Corn is in everything." And, yes, it is. There is exactly one type of saline solution delivery method that does not contain a corn derivative available in the USA.

Lucky for me, I'm not sensitive to some of the derivatives. Can't be anywhere popcorn is even cooking, but I can tolerate small amounts of cornstarch and certain derivatives when necessary - but not corn oil. I think it has to do with the specific chemical treatment to create these items.

So, soon, I don't remember much of anything. I do remember going into the operating theatre - helping in getting (fat) me onto the operating table - and then, not much until the doctor was talking to me.

The whole of what I remember of our conversation that day:

Doctor: "I had forgotten about your pneumonia."
Me: "Huh?"
Doctor said something about being a member of some group that I recognized
seeing him associated with on Google and that they were having a meeting.
Me answering that I knew about that - meaning the group.

Now, my next memory is of my husband saying we are doing IVF. I remember getting home - sort of. And sleeping.

My husband seemed to think I would remember the conversations of the previous day since it seemed I was coherent during the conversations. He got mad at me when I started to ask him what the doctor had said. He kept saying that I was acting really coherent questions. Thing is, I don't remember him being there. The doctor had told him point blank that I wouldn't remember much due to the anesthesia in my system.

I was terribly hurt by his anger.

Finally, he went over the diagnosis with me. Bilateral hydrosalpinx with lesions - no fimbrae found. Fimbrae are the fingers that catch the egg and send it down the fallopian tubes to the uterus - on the way they meet sperm. Except, in me that was impossible. A hydrosalpinx destroys all the cilia along the path and cuts off the egg and sperm from one another. There was never any way we could get pregnant without IVF.

When I googled it, at first all that came up was C. trichomatotis. I had never had the STD version of chlamydia and never engaged in high risk behavior from what I knew. I started searching for other reasons for bilateral hydrosalpinx:

Strep infections that migrate through the body
Almost any pneumonia
Any disease of the bowel/appendix/intestines

I was numb, and angry. But, because I couldn't hurt anyone around me - the sick are not supposed to be an inconvenience to the well, after all, I said nothing. But inside I railed.

In my childhood, my menarche came early and exceedingly painful. I would pass out from the pain. I always had diarrhea with my oncoming period. This did stop once I was diagnosed with allergies - no thanks to my pediatrician - at 20. The damage was probably already done. No one ever referred me to the appropriate specialists until I demanded it - but I didn't realize that I should have seen a Gyn since I was not sexually active at all until I was 27. The only thing I was ever told was how horrible the experience is. Never how important it was.

It seems that the doctor hypothesized that the injuries looked old - as in childhood disease old. Until my mother, who was there, started to freak out. I think he had to spend more time calming down my mother and husband than I would have liked.

Like I said before, I'm an analyst, I wanted to know more. I searched and became appalled. Almost all research after about 1940 (last study I found) was around STDs. Then I found a case study from the late 1980s / early 1990s. It seemed that a number of young girls in Spain who went in for appendectomies were found to have hydrosalpinxes from Pelvic Inflammatory Disease most likely caused by streptococcus infection. I ran across a study about the zoonotic nature of Chlamydia Psittaccae - from which C. Pneumoccocus had been isolated - indicating PID infection in those women who were exposed. It was a later study. The doctors from before would have had no way to know about the pneumonia factor. I did get asthma out of it, though.

By the way, I do not blame the allergist or pulmonologist for the effects of the treatment that gave me asthma - or even this to deal with (tubal factor could have been there before, even) - I had to breathe. If you don't breathe, you will die. And I value my own life. I am angry at the pediatrician and my mother because my illnesses were never taken as seriously as my brother's and I may have paid for it with my fertility.

It was always assumed that I couldn't possibly be sick. I must be faking it. Even my grandmother admonished my mother that I shouldn't be in as much pain as I was, but no one helped me. No one. My brother so much as stubbed his toe, off he went to emergency. Yes, I am bitter. No, I don't bring it up to my mother. Or my father. They wouldn't recognize that, yes, it is the fact that they ignored how sick I was that may very well have led to this.

I learned a long time ago - at age 20 - that the only one who would ever look out for me regarding my health was me. My parents and brother totally ignored my requests not to cook things that caused me to react. I remember falling down in pain from beans and corn being cooked and no one coming to help. It is a wonder I lived as long as I did.

I know parents are just human - and often stupid. I'm pretty sure that my pediatrician catered to the idea that I was just faking since at this point, I'm pretty sure she wasn't all that competent to deal with me.

So, why do I go on about this? If you have a daughter who is in pain from her period, make sure the doctor checks her. You could save her a lot of pain. It isn't always endometriosis that causes pain.

So, there I was with a diagnosis that precludes any way to get pregnant other than IVF - no IUI. And since, IVM is not really available in the USA yet, no IVM - or other newer technology.

What's next? The treatment cycles start.

Who Am I? How Did I Get Here? Part II: The Reaction

The Reaction

I took M.onistat for awhile while this yeast infection was taking its own sweet time to heal. I knew it would take some time, but it itched like nothing ever had.

Again between Christmas and New Year's something awful happened. Soon after Christmas, my husband took our dog for a long walk and I decided to apply the topical creme to cut the itching. The next thing I knew I was looking up at the toilet paper holder and hearing water running. I was confused - I hadn't flushed the toilet. Then I saw. The toilet tank was shattered. The bowl was intact - not overflowing. I started screaming.

No one came.

I calmed down enough to crawl around and turn off the water supply to the toilet tank - or at least mostly. I start picking up stuff and think I hear my husband return. I start screaming again.

No one came.

I had been expecting a phone call, so I had my phone on the vanity. I couldn't reach it. I couldn't get help. I couldn't stand up. I was in terror. I started screaming again.

My husband came. He found me trying to pick up peroxide. He thought I was pouring peroxide. He didn't know what to do.

At some point he helped me get to the bed. Before we got there, I threw up - falling to all fours - I threw up. At that point, I knew I was in the throes of anaphylaxis. I just wanted to go to sleep.

My husband was panicked. He didn't know what to do. He was trying to get his mom - a Registered Nurse - but he couldn't find the phone.

My phone rang. It was my Mother-in-Law. She was dropping something off at our house. Thank goodness she had her nurse's bag with her. My blood pressure was 90/20 and falling. I presented with glassy eyes and flushing. She said that she would have thought it was diabetic shock except that my blood sugars were normal. This is called shock.

No one was getting my epi pen. I thought I was telling them to, but they tell me I wasn't coherent.

At some point my husband called the EMTs. They were less than helpful in some ways. They asked my husband if I was safe to move. Um... they are the EMTs. They read my medic alert, asked where my epi pen was, and never got it or used it.

Instead, they kept trying to get an IV line into me. 90/20 BP and falling? Baby veins? Think they were successful? I was screaming in pain.

They then had the two little girls - where there were 4 large men - carry me out on the stretcher. Truthfully, I had no bruises except for the ones I got from them trying to carry me out.

The ride on the stretcher was so bumpy I had to throw up. I told them this before I got to the stairwell - but they didn't listen. My brain said, "F*&K them!" and I sat up as they were yelling to throw up. I was actually thinking, wrongly, that I could walk without them keeping me on the stretcher.

I didn't know where my husband was for a short time and I was terrified as I didn't trust these people. Anaphylactic shock includes a sense of impending doom - you are convinced you will die - not a pleasant place to be. Trust me on this. He was in the front of the ambulance. His mother followed us to the hospital. He tells me that the ambulance driver had to ask him for the best route to the hospital. The hospital is a straight shot down the main thoroughfare for our neighborhood.

Things didn't get much better at the hospital.

I was not 100% conscious when I was first there. I know that my husband was there for a little bit. He then sent his mom back while he was doing paperwork. During the time no one was with me, there was a student nurse there. At some point, someone gave me oxygen - I have no idea when.

Soon, his mom was back there with me. I know I told the young (idiot) ER doctor I was in anaphylaxis. He and the attending nurse argued with me. I told them to call my allergist. It was his late day so I know he would have been there. They didn't. I kept telling them to call.

For what seemed like hours they did nothing. I seemed to be drifting in and out of consciousness. At some point they send a nurse to try and get an IV line in.

The American Academy of Allergy, Asthma, and Immunology (AAAI) clearly sets the following guidelines for
the treatment of anaphylaxis:

Intramuscular Epinephrine injection followed by Benadryl + H2 Inhibitor +
Prednisone

This was obviously not being followed. They wanted to put an IV line in. This is somewhat inadvisable as I was conscious. (It is the preferred treatment for the unconscious.) In order to get the proper treatment I had to say that I had "atypical anaphylaxis." It wasn't.

Atypical anaphylaxis? Nope, not even close to atypical as anaphylaxis does not always present with swelling and/or hives. A sudden drop in blood pressure is a pretty sure sign of it. The (idiot) ER doctor told me syncope (fainting) was not a symptom of allergy. Yeah. If your blood pressure drops, you are gonna stay conscious.

Finally, my mother-in-law asked what my allergist did when I was in reaction. I told her the AAAI treatment - which is the same. She told the nurse to go get the doctor. Finally they gave me the proper treatment plus diflucan and a diflucan prescription. The (idiot) ER doctor came over and said he didn't think an IV line would be hard to find. I told him I could have told him if he'd asked. He and the attending nurse said they'd never heard of anaphylaxis like this. I suggested they read past the first three symptoms.

This started at about 3:00 / 3:30 and ended at about 7:00.

The Other Doctors Don't Think Much of ER Physicians

I had gotten orders to get into my primary care physician. I talked to the nurse since he wasn't in. She was appalled at what had happened - but my PCPs partner did not want to see me. I went on to call my RE. He wanted to see me that day. (This was the next day.) Unfortunately, my allergist had closed for the day by the time I called and wouldn't be back till after New Year's. Since I knew I would see the RE, I was ok with that.

We told the RE the whole sorted story. He muttered something indicating the lack of knowledge on the part of ER doctors. The term vaso vagal was thrown out. He checked the yeast infection and gave me a prescription for diflucan. The fact that I somehow escaped major injury while destroying a toilet tank amazes the medical staff.

I get in to my PCP that Monday - after returning to work. I also called the makers of M.onistat who want a full report on everything, so I give them permission to contact everyone involved. My husband and I tell our Family Practitioner everything and he insists on a consult with my allergist. He also mumbles about ER incompetence without saying it outright. He is upset that they did not call him and writes me a prescription for diflucan.

So, we get the referral to my allergist who sees me the next day. The allergy nurse hears this and rolls her eyes when I tell her that the ER doctor said "syncope is not a symptom of allergy." You must remember, these nurses are trained to watch and pull in trouble patients into the back room if they start reacting to a shot without realizing it. I know. I've been there. Did I mention I can't take allergy shots because they constantly caused reactions?

We tell my allergist what happened. He is completely unsurprised by all that happened. He actually says ER doctors don't know anything about allergy! I find out that the AAAI thinks ER doctors don't know anything about allergy through a literature search - and that even the international allergy associations have a similar opinion.

Honestly, this scares me to death - possibly literally.

My allergist starts saying something about a vaso vagal reaction. Now, you must remember that I was heavily medicated on benadryl. It completely wipes me out. I had also had a major reaction. For some reason, my husband did not understand I would not bounce back immediately. Psychologically, I'm still not 100% ok about this, in all honesty. So, I'm getting irritated with people using terms like vaso vagal for my allergic reaction where, as far as I'm concerned I almost died. He explains to me that vaso vagal is a type of thing that can happen and what probably saved my life was the fact that I had antihistamine in my system.

I take Claritin-D every day. No matter what. I like breathing.

The allergist gives me another script for diflucan. He doesn't think testing will be necessary since, well, we know I hadn't eaten anything that caused the reaction. All self-prepared food that I had eaten since with no reaction. It was definitely the M.onistat.

So, now, I'm very paranoid about everything and am preparing to go into surgery.

I know at this point that I can't rely on anyone to save me. I'm angry and hurt that neither my husband, or my mother-in-law (a nurse) thought to give me epinephrine.

My husband claims it is because he was afraid I would jerk and hurt myself further. He was concentrating on the fall. The fall was secondary in this emergency. All the doctors told him point blank that if it happens again, use the epi pen. It could mean the difference between life and death.

So now I'm nice and paranoid and prepping for surgery. How would you feel?

After all, 3 physicians had said the same thing:

• ER Doctors Don't Know Anaphylaxis
• I Need To Have Diflucan On Hand
• Husband Admonished To Give Epi Pen Next Time - Everyone seems to think something bad is bound to happen again.

Next is the Surgery.

Who Am I? How Did I Get Here? Part 1

Who I Am

I'm 38 and allergic to the world. I make allergists cringe when they see my chart. I'm the patient that even allergists don't see everyday. I don't just get to be allergic to the normal airborne allergies, no, I'm lucky(?) enough to be allergic to the base component of the American economy - corn - and several of the common elements in the US market: soy, milk, legumes (any bean, pea, or peanut), and tree nuts. And I have anaphylaxis - and not the type that ER doctors recognize, either.

I'm also infertile.

To add insult to injury, I can't even get drunk to numb the pain since even 0.001% ingestible alcohol content. So, slipping alcohol to me can literally kill me. Adds a whole new element to the situation.

In my late 20s / early 30s, I was lucky enough to contract asthma and GERD due to Chlamodiphila Pneumoccocus - a disease seen only in those immunocompromised. I spent about 6 months on prednisone. This is not the same disease as Chlamydia Trichomatotis, but they are related. When I got it I thought I had researched all about it, but I didn't look at Chlamydia Psittacae - which very rarely has caused tubal infertility. So I had a false belief I was fine - but as I learned more, the damage might have been even earlier.

To those of you who think I was promiscuous, I was not. Sure I indulged in m.utual m.ast.urbation and some o.ral s.ex - but I was careful. I always used a condom even for that. The first man I had "real s.ex" with was my husband.

The Infertility Journey

At 37 I finally convinced my husband something was wrong and we needed to see someone. I had been trying since I was 35. We got married when I was 35. His response was always to be patient - even then I was crying at night because I knew something was wrong.

At 35 I started where most women start, asking my OB/GYN why I wasn't getting pregnant. She told me not to worry. The next PAP smear appointment - at 36 1/2 - she told me to try for 6 months with an ovulation detector. Between that time and the time I called about this I bled abnormally during the week between Christmas and New Years - and no one would see me.

The ovulation detector didn't work. I called and she referred us to the first RE (Reproductive Endocrinologist) we saw. All of you struggling with infertility know how hard this is on a marriage - to have s.ex on demand is not a fun thing.

I was already 37, late to the table as it were.

The first appointment she had a student take my history - I should have objected. Hindsight is everything. Why didn't I? I firmly believe people need to learn, but I'm not sure that the student fully understood the impact of my medical history - as a later consult bore out. I know I told this person that I had had chlamydia pneumonia - but from what I understood that was not an issue. I also told her all the medicines I thought I was taking. I said I was taking A.xid, but I was really taking cimetidine - this is a very big deal for some test results. But I will explain more about this later.

When the doctor came in, she was all positive and happy. My husband disliked the clinic from the beginning, I think, and infertility is a couple's disease - not a disease of either the man or the woman. It is very important that you both be comfortable with the physician's competence. My husband and I are very analytical people, this makes a difference in how we want to be dealt with. We prefer an analytical physician to a "perky" physician.

We did the initial tests, except for the HSG due to my allergies. (Seafood is not good for me!) From these, it is determined my tubes are open, but my FSH is high (16).

I will never forget that day. My husband had actually argued we should meet at the clinic. He wouldn't admit that there might be a need for one of us not to have to drive. I was right about that, and he knew it. He was just being a p.rick. We did end up going there together.

We ended up being turned off from this clinic from the way the news was delivered:

• I remember the doctor talking about all the childless couples at the vacation spot she returned from. My heart sank as I knew she was basically saying, "You can't have your own children." It may not have been rational, but that was the feeling I had in my heart.
• To my husband, there was a student in the room who didn't have enough sense to stop smiling. I don't remember her seeing there.
• To me, even after I said "That is not an option." to DE - I will explain why later - she continued on and on about.
• When I asked her about other reasons for the high FSH, she said there wasn't. She was wrong. I'm a trained librarian, maybe not a medical librarian, but I know how to use Medline and MeSH.
• I asked why this was the first month I had not seen an LH surge. (I had taken Clomid.) She said some months you don't ovulate.
• There was a cyst on my ovary.

The first thing I said was: "You made me wait. I told you we didn't have time." The doctor stopped us from having the conversation. Yes, I am still angry that I'm in this situation. I knew something was wrong but NOBODY listened to me. It was devastating to know that my husband had made me wait as much as anyone else had. I had had to pull teeth to get him to agree we needed to see someone.

My husband had the presence of mind to get the records right there and then - no actual pictures from the Saline Tests, but enough to move to a second opinion.

That night was the most horrible night I ever had. I felt so broken - I couldn't stop crying. I couldn't move from the couch. I didn't want to talk to anyone. Both of us were in front of our computers looking up everything we could find about high FSH.

We found a lot.

First, I have more fraternal and identical twins in my family tree than is normal.

• My mother is a fraternal twin.
• My maternal grandmother is a fraternal twin.
• My paternal grandmother is an identical twin.
• My father's mother's father was an identical twin.
• My mother's double-first cousin (siblings marry siblings) had two sets of fraternal twins.
• My cousin has identical twins.

Twinning equals elevated FSH no matter the ovarian reserve.

We kept reading and I found out that cimetidine - which I thought was generic Axid (nizoral is the actual generic) - elevates FSH. When I called the doctor's office the nurse knew of what I spoke, but the doctor dismissed it. The insurance company will not accept a reading with cimetidine in the bloodstream as valid.

We started looking for a new RE to talk to. We were armed with a few literature survey.

Always bring a survey, not individual studies because that means there has been
an extra layer of scrutiny for the studies in question.

The literature survey we took that indicated that someone with my history may not allow the FSH score to be an accurate indicator of Ovarian Reserve. Familial twinning was the biggie. No matter what, I will have an elevated FSH.

My husband started to G.oogle all of the REs our insurance take in our area. I was just going to go from the top by how close they were to us on down. I was not thinking very clearly. I called my good friend who had worked with the state acupuncturist's society and found out several did work on infertility. I got the name of an acupuncturist and immediately called her.

I poured my heart out to this poor woman. I know she hears it all. She has always been in a helping profession and, even though I see her partner these days, she really helped me that day. I found out that most people love the first RE I went to. She was just not a good match for me and mine. I started acupuncture soon thereafter.

We finally found the right RE to see next. He had been in practice for many, many years. He is well-respected in the field. He pioneered some of the standard procedures in place today in IVF and fertility medicine in the USA. We did a citation analysis on him, and found that he worked with difficult cases of all sorts - not just fertility.

The first appointment we came prepared. I had written up my entire medical history pertaining to my reproductive history - except the pneumonia. Everything I knew about the pneumonia had told me that it did not cause infertility. The appointment lasted about 2 hours. He noted that TSH was elevated by the new standards of the Endocrinological society.

Reading the radiological report on the saline test, he looked confused, he read it again. Realization dawned on him. It was not a cyst, rather, it was ovulation if what the radiologist wrote was correct. The report also indicated my tubes were open - at least one was.

When I told him I had always seen ovulation surges until the month I took clomid - and had since - he said that in very rare cases it can act as a birth control pill. Considering my medical history, it was possible that that had happened to me.

He said he could not rely on the tests given due to the fact that I had had cimetidine in my system. And, he wanted to make sure my TSH was not truly elevated. He then asked if there had ever been any other major illnesses I had.

"Chlamodiphila Pneumonia, not the STD kind."

From the tests we had he thought that my tubes were open. He looked at me and my husband claimed I had never told him that. I had. (Why don't husbands remember anything?) The doctor recommended that we consider a laparascopy. I was ready to do it right there and then. My husband was not. The doctor recommended 3 Femara cycles, if that didn't work, we should do the diagnostic laparascopy.

We did 3 Femara cycles. Nothing happened. Then I got a nasty sinus infection. I scheduled the lap for December - perfect timing for the Christmas break, I thought. Well, the universe did not agree. The night before I was to have the laparascopy, I got the worst yeast infection I have ever had. It was 9:00 PM before it became noticeable. (Mind you, I often have had to be told I have a yeast infection after my pap smear. They normally don't itch that bad.) That morning the doctor had to cancel me and told me to reschedule with his secretary. He offered me a prescription for D.iflucan, but I decided to use M.onistat since it was less invasive.

This was a mistake. Continued in next post.

Why Anonymous?

There are some things that can't be said and known by everyone I know. Emotions that are coming through that make even me uncomfortable. I don't want to hurt those around me, so I am starting this anonymous blog.

There will be clues as to who I am here - if you figure it out - pretend you didn't. If you think you know, you may be right, you may be wrong. Sometimes these posts will be angry - sometimes just sad.

The next post is the "Who Am I?" entry.