XLII

I dreaded today, but it's here.

I turned 42 today. Statistically my chances of getting pregnant just dropped into yet another abysmally low category. But with 43 they will be something like 5%. Gulp.

J is sick. Fever, diarrhea, frequent urination, aching testicles, lower back pain. IT all started with what seemed like food poisoning after dinner at a place in Jack London Square on Sunday night. By the time we got home J's bowels were on the warpath. J's freaking out that Dr. Hungarian's diagnoses are coming to haunt him. In the back of my mind, I worry that J's encounter with the dildo cam (for checking his prostate) didn't cause this flare up. No...it's probably just a combination of stress, overworking, and a bit of food poisoning.

We had plans to have dinner tonight at a really nice place here in town but he's just feeling poopy. I made him a 7:30AM appointment with the local urolgist...that will put a damper on any late night plans we have. I was thinking I might just reschedule our dinner for another night, but on second thought, I can go tonight with mom, and the have J take me to Manresa another night. Maximize my dining adventures while I can. Capice?

On the IF front: Dr. Next hasn't called us since reviewing our file and I can only wonder what that means.

I met with Dr. E up in Daly City yesterday. He's a doc that specializes in Infectious Diseases with an interest in STDs. Dr. Hungarian, in NYC, faxed over our lab results to Dr. E's and I showed up at Dr. E's for my 5pm appointment.

Dr. E all but said that he thought Dr. Hungarian was a quack. I was prepared for this. I know that Dr. Hungarian's treatment protocol requires one to think outside of the box, and that I can do, but most doctors are so regimented in their ideas as to "how to treat" patients that they just can't do it.

He took a cervical culture and put it under the microscope. Loads of squamous cells and rbcs as I still had my AF to contend with. "Not a single flagella in sight" he mentioned. But I reminded him that there are non flagellated forms of trich. I felt a bit uneasy being the one to point that out to him, the doctor. He conceded that was true, but didn't offer any reassurances.

I returned to the room while he fetched an "order out" book of lab test. He commented that aren't any blood tests for trich, but according to his wet mounted slide, I don't have it. Hmmmmm... He did a culture for it and also offered to run a couple serum tests for the big C.

He said he couldn't do Dr. Hungarian's IV protocol for J or I because Dr. Hungarian was using the drugs in non approved ways (ie, the treatment protocols were either too long, used IVs when oral drugs would suffice, or the drugs were in excessive quantities). "Let's wait and see what the results show" before doing anything else. "Should I have J come up for testing?" I asked. He said no. I reminded him that J is the one that tested positive for four things. But he said that after being together for over six years that he should have everything that I have. But I've been on a slew of antibiotics this year from the two IVFs and one FET, not to mention my surgery. There's a valid reason my clock is clean and why J's wouldn't be.

Why do I have to be the doctor?

I left with labwork to test for the big C at Mills Hospital in Burlingame and I headed directly there. They tested me for IgG and IgM forms of it but there was a second test. I don't recall the other test they ran. Results will be in within one week and I'm to call him next week.

So I'll beat my head against the wall trying to find a doctor that will give J and I an IV full of clindamycin and gentamycin for our ills. I don't know where on earth we'll find a doctor that will do the uterine lavages or prostate injections that we need...but it is starting to feel like we'll wind up being forced to return to NYC for 10 days for treatment since docs here aren't comfortable treating us.

Not that taking yet another impromptu trip is anything I'd gripe about. Grin.

Day Tre in Bologna: Chocolate Fest

Third day in Bologna.

Last night we dined at Golem, a nice restaurant named after the famed Golem of Jewish lore. We had a Bacon Fritto Insalate with fried pancetta, mista, limone, noci, e fromaggi (8€), cheese il tortelloni in a porcini mushroom cream sauce (9€), prosecco Villa Sandi (4€), and when the time rolled to 1AM and we thought we'd overextended our welcome, our waiter Ricardo brought by two very generous glasses of house limoncello. You could have made a flame thrower from the fumes of our breath. We rolled home about 1:45AM and I didn't even get into bed until 2:30AM.

Morning came way too early. But by 9AM I was up and on my way to the local open air market. My Italian sucks in a big way, and despite a few people actually capable of speaking French or Italian, I just never got around to buying anything. The quality of clothing at the open air markets is just not there, but it's affordable enough that it allows the locals to buy some of the new fashions. A sharp contrast to this is a few streets on the other side of the main drag where you can find Hermes, Giorgio Armani, and Dolced & Gabanna.

At 11:30 I met J at the Neptune fountain in the Piazza Majore for what would be the focus of our day. A bit of history.

So I understood, before coming here, that this place is the gastronomic heart of Italy. Modena is the next town over, famous for its Balsamic Vinegars, the yearly truffle festival is held here in Bologna, and the foodstuffs of Ferrera and Florence are also closeby. But last night about 10PM, J and I discovered that there is a country-wide chocolate festival going on a few streets away. Literally less than a 5 minute walk from our front door we can find just about every single chocolatier, or so it seems, handing out samples and selling chocolates at greatly reduced prices.

How could we have gotten so lucky?

Chioccoshow 2006

Definitely a trip worth the price of admission. We spent a mini fortune on chocolate and, famished, J and I were off to find a panino and caffe, talking about how we might find a way to buy a place here and start up and export business to the US, literally we were in th e midst of this conversation when a flying rat hoisted onto me, not one, but three turds, taking out my only coat and a nice big one landing on the top of my head.

Too coincidental, considering our conversation, I think this visual display of Italian "good luck" means that I'm definitely coming back.

J took a warm towel and carefully removed the bowel contents of the flying rat from my hair. I think the residents three floors down must have heard me from our 4th floor (5th floor in the US) apartment.

J is arranged, and then rearranged, our chocolates for her food blog and then we were off to buy more. I bought some chocolate macaroon/candies, not sure exactly what they are, but they're from Piedmont and damn are they good. J bought something that I can only explain as being a chocolate panforte.

Needlesstosay, going through customs will be quite entertaining.

As the evening ran on, J and I stumbled onto the local antique flea market. The night got cold and our stomachs were yearning for real food. However, before we could move onto something substatial, we passed by a bakery where a miniature sfogliatelle (0.50€) filled with lemon scented ricotta beckoned to me from the other side of the glass. J chowed down a tiny lemon custard tart (.80€) topped with sweet strawberries. Both amazing bargains and quite successful at whetting our appetites for more. Not quite satisfied, we turned town a narrow cobble stoned street and made our way to the little taverna we went to the first night.

Wine in hand, we ordered a plate of small breads (think crumpets without the bubbles) topped with cheese and salmon (8€), cheese and prosciutto, shrimp...and then moved onto insalata con tonno (8€). The waiter accidentally brought us some bread that was moldy, which I pointed out to him. I guess he was rather embarrassed. He returned with a basket of freshly baked bread and topped up our nearly empty wine glasses. Nice thing that he did as the waitress "accidentally" overcharged me 2€ for my wine (a delicious Liano Sangiovese at 9€ instead of 7€).

Dessert was located around the corner at the Gianna Gellateria, a chain gelato establishment, where the lady behind the counter asks you how much you want to spend then proceeds to fill the cup to obscene levels. For 2€, I tasted their ciocolatto, caffe, and the "inferno", a concoction of vanilla and cherries. The ciocolatto was dense and thick, and the other two had been whipped and had a tiny bit too much air for me. But the same amount of gelatto in Los Gatos at Dolce Spazio would have set us back nearly 5 bucks each. Dolce Spazio makes a nice gelato, dense with a nice texure, but they're quite expensive, which makes for a rare treat.

So we started the day with chocolate, and we ended it with chocolate. Walking home with gelato in hand, I proposed a rule for Monday whereby it would be illegal to pass by a gellateria without stopping to sample their goods. I think that despite the extensive walking we are doing, and the 5 flights of stairs we take multiple times a day to get to our apartment, I fear that I will be coming home with a few pounds attached to my arse.

This display of gluttony is what we did today rather than take a train to Florence. The museums are closed on Mondays so I'll likely take a train to Florence on Tuesday by myself. Tomorrow J and I will climb the taller of the two Due Tori and then she is off to photograph another local artist. I plan to explore the eastern area of the city by foot to see what there might be that I'm missing.

On Tuesday, we're invited to lunch with a rather well known local artist, but I'm torn between whether it's a better use of time to go to Florence while I'm here, or to sit on the top of an Italian baside, having lunch, drinking copious amounts of wine, and enjoying the view of the valley. Wednesday is our last full day in Bologna and as it stands, J has nothing planned as far as photographers are concerned, but our artist friend Lorenzo Pugliesi (his site is temporarily down) is having his show and J needs to be there. So perhaps Florence will happen that day just so long as we can return in time.

Did I mention that this trip is all about the food?

Where are the stinking windmills?

So yesterday I found killer airfare to Milan, and today I'm sitting in the airport in Amsterdam wondering what the hell happened. I shit you not. This is one hell of a whirlwind trip. (I did a little wave and smile to Madame Pamplemousse as I flew over Scotland :) I flew over on KLM...insisted on it as a matter of fact, thinking that it would be a hell of a lot better than Delta. Or at least as good as Air France. But honestly, I was not at all impressed by the vittles on KLM. I ordered the "Asian" Dinner, and it was a plate of dry white rice and steamed carrots, cauliflower, and beans. BEANS. As in lima beans. What Asian country eats LIMA BEANS? It was one of the worst airline meals I've ever eaten. Screw being dairy free...I'm ordering the regular menu on the way home. I'll suffer with the casein allergy just so long as I don't have to eat that crap again.

And yes, I'm regretting not flying Delta, cuz I'd already be in Milan by now. So much for KLM. Live and learn. Better yet: I'll fly Air France next time. That is probably one of the most amazing planes I've been on.

So I'm off to Milan in about an hour and a half. It's 4:45AM in SF, and 1:45PM here. Four hour layover. Egads that's a long time to sit in an airport. And I don't dare sleep lest someone off with my bag and cash.

I'm landing in Malpensa airport...31 miles north of Milan...so I'll have to take a shuttle bus or train to Milano Centrale (the big train station) and from there it's another hour and 42 minutes to Bologna.

So a 9 hour flight, a 4 hour layover, another 2 hour flight, a 1 hour bus/train ride, then a 2 hour bullet train. Oh yeah, then we walk from the train to the apartment. Think I'll be tired after 18 hours of travelling? HELL YES. And ready for some vino rosso. :)

The reason for this impromptu dash across the planet? My best gal pal, JS, is in Bologna with an apartment til the 15th of November. Years ago when she was living in Cairo, working as an Egyptologist, she tried to get me to visit her over and over. I missed out on all sorts of neat sidetrips that she took off on from there, too. So this is kind of a "we're finally doing something together" trip...as well as a "My brain is full of this infertility bullshit, I'm tired of cooking for my mom, and I just have to get the hell out of here" trip.

I've been totally stressed out since I started taking the dexamethazone in an attempt to get my hair to stop falling out. It's not working. It's still falling out and I feel pretty crappy. So I guess I'll wean down to 1/2 a pill of dex, and up to a 1/4 pill of synthroid. My TSH on Monday was 2.2, so it's on the rise again, and higher than DS wants it. They told me to go back on it if I ever wanted to get pregnant...so I'll go back on it, but I'm starting with tiny doses to see what happens. Manana....

Lamenting my Hair

The hair is still falling out in handfuls. I left today's mini-wig of hair in the toilet so J would see it when he comes home tonight. Not to freak him out, but because he seldom believes my despair over things of this nature. He thinks I exaggerate.

The lady doth protest too much.

While I do tend to sometimes get passionate about things in conversation, this sort of thing just has to be seen to be understood. I want him to SEE, understand why this is disturbing me so much.

So today I lost another huge handful of hair. When I run my fingers through my hair it feels different. I can tell hair is missing in significant quantities. Yesterday a girlfriend returned an old hair clip to me that even though it is huge, it used to not be able to hold the weight and volume of my hair. Yesterday, it held it ALL. With room to spare.

sob

DB's nurse said to me: "I lose that much hair everyday." She is Turkish and has a headfull of thick wavy dark hair. Yes, I know that there are some women that can actually lose that much hair without it being noticeable. But not me.

One girl from the Yahoo Immunology Support board wrote to me in a private email,

Do not worry as I said the hair thing looks worse than what it is and it is reversable.

I measured my hair today from crown to end. It's long. Nearly to my waist. Twenty four inches in length. Dr. Google says that hair grows about 1/2 an inch a month. Do the math. Reversible? It will take me four fucking years to regrow what I have lost. If I cut off half of my hair, to 12", it will still take me two years to get it to the same health that it was just a month ago. Even if I dump miracle grow on my head and it doubles in growth rate we're still looking at two years. And no, my hair doesn't grow THAT fast.

A quick glance in the mirror reveals yet more scalp showing through today. What's even weirder is that my normally dry hair and scalp now feels greasy, oily. My hair is normally so dry that I can make do washing it every 3 or 4 days, but now it looks rather untidy after just two days. It just feels WEIRD. It's almost as if I've lost the hair that was soft, and all that remains is wiry coarse hair and, of course, the grays. The gray hair shows up even more so now that the others are falling out in droves.

I can only wonder this:

What will grow back once this hellish episode is over? Will the hairs that died be replaced with gray hairs?

If so, I will be probably 1/3 gray. That is if it stops falling out immediately. If it continues, I'll likely be 1/2 gray.

Although I understand the science behind why this is happening to me, I just don't understand the why me.

DB on Hair Loss, Centrifuges, & Travel Plans

Before Dr. Beer died, he left a mass of information in the way of written dialogues between himself and patients. In these, we find lots of great advise, that is, if you're a believer in immune issues causing RPL or implantation failure.

So why am I losing hair? Here's what he had to say on the matter for patients in the past:
**********************************

Patient: I have moderate to heavy hair loss each day. When I got pg, my hair stopped coming out totaly - not one strand. It hadn't been like that since I was 21. I thought it was because of the pg hormones etc. After the m/c's, my hair started to come out like it did before I was pg - heavy again. I haven't been able to get pg since (over a year) I recently tested + for anticardiolipin and antithyroid antibodies. I am on prednisone and baby aspirin. Since I have been taking the prednisone, there is a major difference in my hair. It comes out much, much less - almost like as if I was pg. No chance of that yet, I'm still waiting to o and we haven't bd'd since my flow started. I'm wondering if there is a link to supressing the immune system and hair loss. Sounds crazy...eh? But I seem to think and feel that there is some connection.

DR. BEER: WOMEN WITH THIS CONDITION HAVE IT BECAUSE OF:

1. ANTITHYROID ANTIBODIES WHICH LEADS TO HYPOTHYROIDISM AND HAIR LOSS
2. ACTIVATED NK CELLS PRODUCE TNF-ALPHA (A CHEMOTHERAPY DRUG) WHICH CAUSES APOPTOSIS OF THE FOLLICLE CELLS (GLUES THE DNA OF THE HAIR SHAFT CELLS) SO THAT THEY CANNOT REGENERATE OR RECYCLE AND HAIR FALLS OUT JUST LIKE IN WOMEN WHO RECEIVE CHEMOTHERAPY. ......

**********

Patient: I have TONS of hair loss and right before my last IVIg I had TERRIBLE RLS. Did the IVIg and it cured the RLS but now I still have more fevers, body aches and terrbile immune feelings. IS this causing baby B to be smaller?

Dr Beer: You need more IVIG.

Patient: What can we do besides IVIg? Can the IVIg cause my fevers and aches and hair loss?

Dr Beer: No, this is not caused by the IVIg. It is caused by the immune activation.

********************
Dr. Beer,

I am hoping you can help me understand why I am losing hair daily and most importantly, how to stop the hair loss. It falls out in the shower, when I
brush it, all day long I find it on my clothing, every night my bedding
is covered with hair. I am getting worried about it continuing to fall out and
about why this is happening.

DR. BEER:
LOSS OF HAIR IN MY EXPRIENCE STOPS WHEN THE THYROID CONDITIONS ARE STABILIZED AND THE CATEGORY 5 IMMUNE PROBLEMS SPECIFICALLY THE CD56+ TNF ALPHA PRODUCING CELLS ARE SUBDUED IN TISSUES.

Just so you have an idea of where my immune system is right now, my latest NK Assay was done two weeks ago and is as follows:
50:1 is 5.4 [note: this is LOW, excellent]
25:1 is 3.3
CD3 is 72.5
CD19 is 18.3
CD56 is 4.8
CD19+CD5 is 14.6

DR. BEER:
THESE BLOOD NUMBERS ARE OK. IT IS THE TISSUE-RESIDING NK CELLS THAT I BELIEVE CAUSES THE DAMAGE. WHEN NEW HAIR GROWTH BEGINS AND THE PROBLEM IS CORRECTED THE OLD HAIR SHAFTS ARE RELEASED AND JUST BEFORE THE PROBLEM IS SOLVED, GOBS OF HAIR FALLS OUT. DO NOT DESPAIR. THIS MAY BE A TURNING POINT FOR YOU.

********************************
So either I should be having an immune flare of NKs (which secrete TNF-A) ...or.. my thyoid has gone haywire. I actually have symptoms of hyperthyroidism, not hypothyroidism...and I doubt that I have ATAs as we've tested for those.

That first girl said that taking dexamethasone seemed to (anecdotally) help her problem. Hmm...I've got loads of dex laying about the house.

Centrifuges:
I unpacked the last two centrifuges that showed up on my doorstep in the last few days. They're both Sorvalls, but one is a HPC-1, and the other is a HPC-2 model. Both have the nifth HL-4 rotor, interchangeable between centrifuges, that accepts the horizontal buckets that the LIT protocol demands. I quickly grabbed one of each variety of tube I plan to use in them: a 4cc draw serum separator, a 15cc conical centrifuge tube. All fit perfectly. So the plan is to use two buckets in one for the small tubes, and two buckets in the other centrifuge for the conical ones. The first centrifuge, a meager $75 purchase including shipping (score!), is something I'm not sure if I'll have a use for...so it'll either go back onto ebay or become a donation for Dr. S (my ex the chem teacher, not DB's replacement).

Sadly, one of the centrifuges sustained some damage when shipped via FedEx ground, so I will have to put in a claim to see if there is something that can be done. The item was only insured up to $100, and I paid $150, so they might make me a cash settlement. These things are as rare as hen's teeth, so I doubt they'd be able to do anything except a cash settlement. (A repair would honestly be preferable tho...I can't even imagine what it would cost to repair such an item).

I'll try to get the other items ordered by Monday night. I'm still hoping to escape to parts "far away", departing Tuesday or Wednesday, but my travel companion, who is already at said destination, hasn't confirmed enough for my sensibilities that it is 100% okay to visit her. So I'll wait a bit longer and hope that the airfare that I've found will still be there when she does get back to me.

Itchy Feet

The last few weeks have been difficult on so many levels.

• Dr. Moustache fired us and despite my wanting to give him a piece of my mind, I haven't. I've sat on my anger and the lid is rumbling.
  
  
• We did a 3 day whirlwind trip in NYC seeing Dr. Hungarian (whom I adore).
  
  
• My mom's house went into escrow today (for $45,000 less than I listed it for in May. Ouch.)
  
  and the worst?
  
  
• My hair started falling out about a week ago. In HANDFULLS! It seems that my otherwise synthroid-ruled-thyroid suddenly decided that it had plenty of synthroid and it went "hyper" on me. I should have seen it coming when the tinnitus and the overtly warm hands ensued, but the symptoms slipped came on and I wasn't paying attention to them. I didn't put "two and two" together. Until the hair started falling out in handfuls.
  

So I've cut all of my meds, save for the daily baby aspirin, and I am trying to detox as best and as fast as I can. I'll monitor my thyroid functions in about three weeks and see where things are at. I can hear some of you saying I should stay on it and monitor it NOW. But I did a test on Oct 10 and my TSH was at 0.9. Pretty normal. So normal numbers for me mean hyperthyroidism. The doc's nurse said I can quit cold turkey if I want and, YES GOD DAMMIT, I want to. Before I am bald for god's sake. I have very long hair...it USED to be thick. Healthy. Now it's not. This is no small matter. It will take me three fucking years to get it back to where it was...unless I cut it. BAH!!! The idea makes me ill.

I want to scream, and cry, and throw a hissy fit over all of this. For the first time in a LOOOOONG time I can finally feel emotions, tears well up in my otherwise dried out eyes, and it feels like things are afoot.

And get this: I actually questioned today whether I should even continue trying to get pregnant. I felt like giving up today. My eyes are again wet as I write this. What is up with me? My god. The idea of giving up crossed my mind today. I'm getting emotional again. Coming down off of these drugs is letting something loose in me and I don't know where this is leading.

What to do when it feels like all hell is breaking loose?

Pack a bag and GO.

And go I will.

Will post more when details are firm.

==================================

Jesus christ. Just noticed that Google is pushing micro-centrifuges on my blog. That is fucking hilarious.