Long Time No See...or as the Japanese say "O Hisashiburi"

I'm sorry I haven't blogged in a LOOOOONG time. I have been in the murky muds of depression me thinks. So many anaphylactic reactions (1 a week or so, or more...), recovering, feeling isolated, and continuing to try and figure out WHO I am now.

I've started writing a collection of poetry, tentatively called "Finding Abraham's Daughter"...as you can perhaps imagine, it is what it sounds like - an exploration of the Jewishness that perhaps has always been inherent in me? If that makes any sense...And I mean I've STARTED. I've just written a few things. But I have been able to see a vision for this as a COLLECTION, so that's why I'm holding to it as such. One must have goals.

It's time for me to return to the land of the LIVING. I haven't read much of anything; listened to much of anything; seen much of anything; made much of anything; engaged in much of anything. I've been sitting and sleeping on this same spot on this couch for months now and it's not getting me ANYWHERE, is it?

It's a sad, sad state of affairs if ALL you've done in a day is have Facebook open on your desktop.

So...I've ventured out of my shell today...here I am...

I hope you've all been as well as you can be. Please, drop me a comment, let me know how you've been. And if you blog, I'll be catching up on what you've written...

I'm Jewish!!!

Yah, you heard me right.

I'm Jewish!!!

How is it, I've managed to make it to 42 years of age and only just found this out???

I recently took part in a DNA study for Myeleoproliferative Diseases, of which Mastocytosis is one, and got back a whole bunch of DNA information about myself from my spit. Pretty amazing, actually. And one of the things I learned was that I'm of Ashkenazi Jewish descent on my Mother's side. My DNA profiling could only trace my maternal line because they need a brother, Uncle or Father sample from my family to do the paternal side of the family. This came as a HUGE shocker to all of us, who up until now, thought my Mother's family was pretty much Anglo-Saxon white bread. Turns out there's some heavy duty Eastern European blood coursing through those veins.

I burst into tears when I read the report that told me this. NOT because the report was actually telling me I was carrying the three gene markers for breast cancer and that there is an 80% chance that I will develop breast cancer before the age of 60, but that these three gene markers are specifically Ashkenazic Jewish gene markers...because it felt like this huge piece of my life's missing puzzle was neatly plopped into place. And I KNEW who I was. A peace washed over me.

I cried really hard for about 3 hours. My husband, between loving bouts of comfort, was laughing at me. "So I was right, you ARE a Jewish Princess!?!?!"...all these years, he's joked about me being one...and it turns out, I may well be one.  I cried because I was relieved, like I said, I FINALLY sort of had a sense of WHO I was/am/ARE; but more than that...I was crying because I was thinking about EVERY single time I have been treated badly by a Jewish person for being lesser of a human being than 'them'; for being a Gentile; a Goy...things I've been called by a former roommate and her friends who used to return from Synagogue a couple of nights a week to hang out at our apartment and proceed to rip said Gentiles and Goys to pieces, including me and I was present.  It was the first time in my life I experienced racial profiling and was routinely belittled for being what I was - me. Which is to say, not one of 'them'. Because that's what the world seemed to be divided into for the Jewish people I was experiencing..."THEM" and "US".  Even the two extremely successful millionaires I worked for as personal and executive assistants who were Jewish...they made sure I understood that there was "US" and "THEM" and the world was divided; one was better and we (that is to say, my kind, non-Jews) were lesser.  

I did take the time, during the course of knowing those people, to ask why they felt this way. Interesting to me was that all them shared the same response: "We are God's chosen people."

Apparently, this gives you a sense of superiority over all men and other races?

I don't know.  I can't imagine that this is ACTUALLY the case for all Jewish people.  After all, it turns out that I am one.  And I don't feel that way about human beings.  

However, I'm the first to admit, I don't know the first thing about being Jewish.  I'm eager to learn though.

And it would be wrong of me to leave you thinking that I've only been treated badly by Jewish people...that's not true. I have a lovely and dear Mastocytosis friend who is Jewish, and in one of my hours of need, she kindly and voluntarily helped me with medication that I couldn't afford at the time, and I remember thinking at the time...WOW, this wonderful woman is Jewish and is helping me and isn't treating me badly because I'm Goy or Gentile, she is just a beautiful human being and I am soooo grateful for HER (and her family.) I'm not sure even she knows how that small act of kindness helped shift what had been up until that point a VERY negative experience with pretty much every Jewish person I had encountered. But she did.  So, Julie, thank you. :)

But here I am, 42 years old and I've just found out that I'm Jewish.  It's funny but all my Jewish friends (I do have lots of Jewish friends it turns out...) all quickly wished me "Mazel Tov" and welcomed me to "The J Sisters"...and I like it. But I have to be mindful that I don't segregate the world into "them" and "us" and start enjoying belonging to a club that refused to have me as a member before now.  At the end of the day, we're all human and aren't we all made in God's image and loved by Him? Am I being too idealistic??  

I know it's not as simple as all this....I mean, there's being Jewish by blood and then there's being Jewish by faith.  I know NOTHING about being Jewish by faith, but I want to know. I have a genuine curiosity and fascination with it (and always have) and for years have wanted to go to Synagogue.  I'm not even sure how to begin though.  I have no Elders in my community to look to for answers or guidance. I have no Grandmother or Grandfather or Parents to ask in the ways and traditions of my people. When I've asked my Jewish friends to help me understand and learn about being Jewish I am politely silenced.  I may be asking the wrong people. (That's just occurred to me.)  So for now, I will use the internet and the library to learn what I can, as I can.  I guess I have another 42 years to learn what the first 42 years was missing.

And so, there you go, one more gift that Mastocytosis has given me...now I know my genetic background and I'm Jewish.  I would NEVER have known this if I hadn't gotten this crazy disease and taken part in this DNA study...see, you just never know where life is taking you....that's one heck of a gift I tell you. It's crazy good. I'm thrilled!

JINX!

So, last week when I wrote that I was afraid to jinx myself but what the heck, I was almost a week anaphylaxis free? Well, lo and behold, I ate something Thursday night (I wrote the blog on Wednesday night) that my body didn't like and whammo, I was in anaphylaxis pretty quickly. I did everything wrong too. I left the room, gagging and ran to the loo. I shut the door (thankfully didn't lock it) and proceeded to vomit into the toilet. Pretty sure the only thing keeping my airway open was my vomit forcing it's way UP the airway. Antony was frantically searching for my epi kit downstairs because it had fallen out of my bag and was nowhere to be found. Thankfully, it was found, he came upstairs to the loo and stabbed me with an epi pen...and then...sigh...everything got better. I stopped gagging and choking on my own mucous (well, the mucous slowed down...), felt like a bear had been lifted off my chest and air could go IN. Oh, it was painful not having air go in.

So, we got through that.

My cold left.

And then we had beef stir fry for dinner again tonight. And again, I threw it up, hived up, flushed up and got short of breath, felt like a bear was sitting on my chest. The dog was going crazy around me. It's made with whole ingredients...so what is in it that I'm reacting to? The ginger? Brown sugar? Soy sauce? Garlic? Any of the veggies? The beef? All I know is, it's bloody painful to wretch it back up, so that's the last time I eat it. It's sooooooooooo delicious and is soooooooooo colourful and 'good' for you. SIGH...

The dog didn't settle down until we'd used an epi pen.  He's become really attuned to what's going on when I'm reacting. He seriously starts pacing, whining, wagging his tail and whining AT us with this sense of urgency and he jumps up at me, paws at me and whines a lot. He KNOWS. At first, we thought he wanted 'out' or food or water or fuss, but once we'd ruled out these basic needs/wants, and it was obvious that it was something else that was bothering him, we let him tell us what was wrong.  He danced around me and paw'd at me and whined.  How does he know that I'm short of breath? Once I've had the epi pen, and am feeling better, he settles right down and cuddles up beside me. Won't leave my side.

Anyway, two epi pens since last Thursday. This has to stop.

Ok...One More Crack At It...

I hate jinxing myself but here I go...I've made it to ONE MORE WEEK ANAPHYLAXIS FREE!!!! It IS Tuesday, right? Oh no, it's Wednesday...it's a week and one day! Ok...a week ago, two days ago was my last one. Last Epi Pen. NOW...to make it to TWO WEEKS.

What I'm not telling you is that I've had this horrendous cold. HA HA...it's ok, I LIKE colds. Because when I get a cold, my mast cells and eosinophils leave me the BLEEP alone...weeeeee hooooo!!!! I get a rest from puking (unless it's stomach flu...) and bone pain (unless it's bad flu but even then, I'll take flu pain ANY day over bone pain) and no hives or flushing or itching....and usually, anaphylaxis and allergic reactions. I can't say the fatigue is any better because, they are comparable. And fever, well, I don't get fever with Masto. or Addisons. And I had a two day fever with this baby. But not even any green boogers. THAT's how great my immune system is. Lucky me.

Which got me to today.

On the tail end of the cold. The fever subsided last night. The cough left. The runny nose ceased up overnight. Sore throat disappeared quickly last night. Everyone else who had this cold was knocked out with it for over a week and needed antibiotics for sinus or lung infections. But no, not me and my SUPER DOOOOOOOPER IMMUNE SYSTEM, no, I only got it for 2 and half days. (Sounds like I'm complaining, doesn't it?  I just like the rest from myself...) SO TODAY...I FELT NORMAL. Only slightly congested sinuses (nothing serious) and slightly raspy voice (not enough for good phone sex) so...what does Fiona do when she feels NORMAL?!?!??! She...cleans her house.

WHAT?

Yeah, you heard me.

Cleans. The. House.

I know. Someone shoot me.  I get a good day and I waste it CLEANING my house!??!?!?  

But it's almost compulsive with me.  I think I feel guilty for what I'm not doing most other days and feel like as soon as I can, I MUST do this.  I'm looking at it now, and it's not like you can even TELL that I toiled over what I toiled over.  

And here's the worst part...I'm now sequestered on the couch because I OVERDID it, and taxed my adrenals and maybe set myself off with some dust and upset my mast cells too? It was cleaning the stairs that did it. It's a tough job that one (to do it properly.) And there was SOOOOO many dust bunnies on them. AHHHHH, it was horrid. We have a combination of wood and carpet on the stairs.  Dust bunnies in the corners of the wood and little white dog hairs and lint caught in the carpet slap in the middle of the stairs.  I was sweating buckets by the top stair, had the shakes, sneezing and was ready to vomit...oh, and then I did. But didn't stop there, had to make supper, so I started it and realized I was likely going to pass out in the kitchen. So I called for help. Hubby came, took one look at me and helped me to the couch. I proceeded to vomit. I continued to shake. I required help to medicate myself.

THEN, get this...our dog Jack (a mellow Jack Russell...forgive the name, he came with it...) started freaking out. We ruled out the usual suspects. He didn't need to pee. Music coming from the computer wasn't bothering him. He had water and food. He kept jumping up on the couch next to me, and pawing at me. What I wasn't saying to anyone is that my tongue was tingling, my bones were starting to hurt and my chest was feeling a bit tight. Jack kept whining and pawing at me, then started pushing me with his face. He can be a vocal dog. Not yappy but vocal when he is actually communicating and he was trying to say SOMETHING. My husband and the kids were trying to figure it out. So, I finally said "someone grab my kit, I need some epi spray, ventolin and benadryl, please." Bea ran to grab my bag. Jack barked at Bea and wagged his tail at her bringing the kit. I used the meds. He stopped being vocal and was just wagging his tail and looking at us like we were such silly humans. Then he started pushing me with his face and paws again and did so until I was lying down on the couch and he was lying down on top of me. He wanted me to lie down. My family was gobsmacked. "That dog has more sense than you do" my husband laughed. Jack then moved to the end of the couch and tugged at the folded blanket sitting on the back of the couch. I hadn't said anything to anyone, but I was cold. Our usual blanket is in the dryer being washed/dried. HOW did the dog know that I was cold!?!?? I had literally just thought it "whoa, I'm cold..."  This dog has seriously blown me away tonight.  As I write this, he is curled up on my legs on the spot where they hurt the worse. HOW does he know???

Anyway, I hope I feel good by morning, I have a meeting with a client to discuss a writing job for website copy; and in the afternoon I'm doing some vocal and Self-assertion coaching with a student. I thought for sure I'd still have a cold by tomorrow and would be ok. My immune system is TOO good. 

Gut Hell, Anaphylaxis and How To Help My Girl...

That'll teach me to post on Facebook that I made it to two weeks anaphylactic-FREE. Then no less than 2 hours later, I ate a Ferrero Rocher chocolate and immediately started having a reaction. Started off with severe flushing, including the ears, then hypotension and then my throat started closing in and I started gagging. Mum and Antony called it right away. Epi worked her magic and then all was well.

This on the heels of spending most of the day on Thursday in hospital as well. I had had 5 days of severe, and I mean SEVERE, diarrhoea (including two rather undignified accidents in my clothes) and I can't remember ever sleeping that much. Then I woke up thursday morning to rather nasty puking too, along with what I thought felt like a dehydration headache.  

I got through the morning, my kids came home for lunch and I was doubled over in gut pain, wrenching and on the loo (with bowl in hand...hate it when you're dealing with both ends) and had the shakes. HOW I made them lunch is beyond me, but Mothers do all sorts of things through all kinds of situations, so...I did.  Anyway, after the girls went back to school, I called my husband at work and said I needed a ride to Emerg. He came and got me.

I expected to spend ages sitting in the waiting room. But when I got to triage, I puked in front of the nurse (a really nice man), explained I had Adrenal Failure and am supposed to come in after 3 days of this sort of madness but I'm on day 5, and I have Mastocytosis and it's ok if he's never heard of it. He asked me a bunch of questions and I realized then WHY I should've had someone with me...I was having trouble answering basic questions. I apologized.  He said they were sending me to lab for immediate workup but first to go get registered at the next desk.

I was getting registered at the next desk, having more trouble answering basic questions, but still trying to be helpful. The nurse said to me at one point how pleasant I was for someone who lives with so much serious illness and how refreshing that was. Then she asked me if I'd like a wet cloth to wipe my face (because I was still puking while all this registration was going on, and I kept apologizing for it...) So she gave me a nice damp facecloth. Then she took me to lab personally and got me settled.

I seriously thought, with ALL those people in the waiting room that I would sign in and have to go have a seat out there and wait forever. But no. I waited in the lab for a while and then a nurse came and got me and said the lab could come to my room to take my labs and they were going to get me comfortable. They kept coming in to change my puke bowl for me. They commiserated with my gut hell.

It was pretty obvious that I had a stomach bleed going on.  I've had one before. Throwing up brown, coffee grounds/curdled looking coke and gut searing pain in one area...tell tale signs.

My labs came back and the Doctor came in.  I had just assumed my Masto. was acting up (even though I don't usually get diarrhoea THAT bad for THAT long....) My labs showed I was badly dehydrated and fighting an infection, so she thought I had one of the nasty tummy bugs running around Winnipeg right now. She saw my puke bowl and said "stomach bleed too, huh?" and examined my tummy. We talked about how I'd one before and what we'd used to treat it. They don't carry Pantaloc at Urgent Care Misericordia Hospital, where I went, because they don't have a Gastro. Doctor on staff, so she decided to bag me with ranitidine instead and maxeran for the vomitting. I haven't had maxeran before. Usually we use Stemetil but she said they haven't used that drug since the 90's. Weird...all the hospitals I've been to have used it. Anyway, we used the maxeran and it worked BUT I reacted to it. I hived and flushed with it...but nothing else.  I got two big bags of IV fluids, steroids (hadn't been able to keep my own in) and my headache totally subsided. I slept.  They let me go home later that night.

Two days later...I am no longer puking and I have a prescription for Pantaloc to get the stomach bleed under control and my whole gut is feeling less acidic and nasty generally. It still hurts/burns to drink/eat but improving. Because of the anaphylaxis, I am now sequestered and on prednisone for 5 days.  I am taking benadryl every 3-4 hours because I'm still flaring if I don't. This will probably go on for a few days. At least I'm not puking...mind you I'm not really eating (it hurts!)

ALL of this on the heels of my 10 year old having a major meltdown, after about 6 weeks of explosive behaviour, night terrors, not wanting to sleep in her bed, stalling at bedtime, irritable after school, being nasty to her sister and then it started with her speaking badly to my husband and me too. We kept speaking to her about it but it just kept going on. Then on Tuesday, it all came to head after she exploded at her sister AGAIN, and when I stepped in she blew up at me (over a painting project we were supposed to be having fun with at home). So I asked her what her problem was and after a bit more pushing, she blurted out that she is terrified of waking up and me being gone or dead; coming home from school and me being gone or dead; of one day the epi pen not working and me dying; that she's angry that I'm sick and that anaphylaxis could kill me and she's sooooooooo scared I'm going to die from it...and she broke down in a heap of wailing little girl and I held her tight, and cried with her and thought "dear God, HOW do I make this better!?!!?!?"

We had a long talk and hugs.  I'm not sure if I handled it properly or well, but I handled it the only way I could think to at the time.  I told her she had a right to be scared, angry and frustrated because what she lives with creates ALL of those feelings. I thanked her for sharing her feelings.  I told her that I am doing and will do everything in my power to be well, stay well and be around for a long time.  She interrupted me here and told me that she was angry with me because I DON'T look after myself properly. I take chances. I go places and eat things that can hurt me and I take risks. (Here I was thinking I needed to show my kids that I wasn't afraid to LIVE life...) So, with her sister present too, I asked them both if they both felt the same way about the taking risk thing...and they do. They are both angry with me for not being more careful. So I promised them I will be more careful hereon in. We have agreed that there ARE things that I just don't yet that can hurt me and that we will be understanding of these things that are unknown yet.

I have been sleeping with my 10 year in her room, in her bed, with her the past few nights in order to give her a sense of security. She continues to wake up several times in the night screaming "Momma?!?!? Momma!??!? ARe you there??? MOM!?!?!?" and I gently pat her hair, tell her I am there, it's ok, and tell her she can rest and go back to sleep. And she leans in, snuggles, sniffs me and goes back to sleep.  I'm hoping that this kind of nurturing will help her get some good rest and will ease up with some time.

SO imagine Thursday afternoon, after telling me all of this...she goes back to school at lunch time. Comes home after school and I'm not here.  One of her greatest fears HAPPENING.  My husband said she was really upset.  She came home from school and I was at the hospital. She totally melted down. I was happy that she melted down though, instead of bottling it up. He said he just held her and told her that he'd seen me and they were giving me medicines and they were taking good care of me and I was going to be ok and home later.  When I got home from the hospital, she ran and hugged me for dear life. That night, she woke up, I'm not kidding, about 11 times. Serious night terrors. All about me dying. So at 4 am, when she was awake, I suggested maybe tomorrow she not go to school.

Yesterday, then, she had a 'personal' day off of school. We snuggled all day on the couch and watched movies. She kept saying to me, all day long, "Mom I love you."  I just kept telling her "I'm here. I love you too."  She is more relaxed today.  She only woke up 4 times last night.

Think I might have to pick up a book on 'attachment' parenting or something.  It's going to take some serious love to help this little girl grow up healthy.  I mean, I know we can't help this reality we're living with, but there's GOT to be something we can do to help her through it. If anyone has suggestions...I'm all ears.