The Holidays and NOT ME Monday

Well it has been a long weekend. My mast cells over reacted to something and I spent most of the weekend in a funk. I most certainly did not lie to my husband and say everything was ok. I would not risk my health that way!! I would never take a nap in the middle of the day when my chest hurt, and I didn't have nightmares about having a heart attack. I mean really who would do that.

My inlaws were 90 minutes late for dinner and I would never curse their name because of it. In all my frustrations I would never tell my daughter to leave me alone. Not me, no I could never do that. I love my children way too much. On Friday I didn't guilt my friend into going to the casino with me as she promised, instead of letting her out of it. I am not that kind of friend, and would never do that.

I would never contemplate what death would be like. I mean I have so much to live for, but some days when masto takes hold I just want to let go. But I would never think of such things, no NOT ME. I would never feel sorry for myself and my disease. No NOT ME.

My favorite Christmas as a child

Well we all have that one great childhood Christmas. Mine was the year after my grandfather passed away.

My mom was a single mom with 2 jobs and no money. We lived with my grandmother, trying to take care of her in her grief. When my grandfather was alive she always made homemade chicken and noodles for Christmas eve. She would roll out the noodles lovingly and I would watch in amazement as my gram made the best meal of the entire year.

The year after he died, gram didn't want to make noodles or anything else. My mom having no money for gifts decided we were going to build our own bikes!!! We went from garage sale to garage sale, the auction, junk part places, until finally we had everything we would need. We then had to sand the bikes down, paint everything clean all the chains, and the spokes, removing all the rust. My mom, brother and I worked for weeks on those bikes in my moms spare time. While working 2 jobs and caring for gram, mom was stretched pretty thin. Well Christmas rolled around and I asked what we were going to have for dinner. Gram just sat there at the table,, chain smoking, looking sad. So my mom and I decided the next day Christmas Eve, we would attempt to make homemade chicken and noodles. Well needless to say there was flour all over the kitchen, my brother was squealing in laughter and my grandma cracked a smile!!

She then shooed us away and took over the monumental task of making our Christmas Eve dinner. The next morning, my mom wheeled in our finished bikes with baskets and name plates (something we didn't know about), and my grandma bought us each a new outfit including cute socks. I also got a pair of roller skates!!!

To this day I remember the Christmas my grandma came back to us. That was in 1981!! She is alive and kicking today at the age of 80. And yes she can still make a mean chicken and noodles.

Merry Christmas to you and your families, and may God bless you every day.

Not Me Monday 3rd time around

I did not smirk at my hubby when he tossed out there to buy me something sparkly for Christmas. I did not say "we can't afford it", knowing darn well that we could, its just that then my present to him wouldn't seem as nice, no indeedy I did not do that.

I did not get into a fight with my teenage son just because I was grumpy. I would never do that. I would never overcook dinner, toss it out in the garbage, and order pizza because I was too embarassed!! I would never be embarassed in front of my family, no NOT ME.

I did not ditch out of the book club Christmas get together because I was feeling down. Why would I ever do that, I mean come on, its Christmas!! I did not forget to buy something for my hubbys stocking, I mean how could Mrs. Claus do that.

And finally, I did not feel so bummed that I curled up in bed and fell asleep. No I would never do this on a cold blustery day just because I was blue. NOT ME!!

Sunday Blues

Well being a chronically ill person tends to lead you to the blues. But being a mom really should have more ups than downs!!!

My son refused to go with my husband Christmas shopping for yours truly. He is 13 and we butt heads fairly constantly. Lately its all "you don't get it mom", and "your so lame mom". All because I want to talk with his 'friends' parents prior to 'hanging out'.

Now I know I am not perfect by any means, I get crabby easily, and sometimes say no out of fear versus real reason. But I ask you, isn't a mom entitled once in a while?? With all the stuff going on in life, and the holidays coming I just feel very out of touch.

Well off to clean the kitchen yet again and do more laundry. I will post my Not Me Monday probably first thing in the morning. Good night to all and may your teenagers be nice to you!!!

My masto story

Well since I haven't posted in a few days (been busy) I figured I would let those of you out there who want to know my mast cell disorder story hear it. Its long, but worth it in the end.

Well, where do I begin??

I have had UP (Urticaria Pigmentosa) for 30+ years. When I was diagnosed 1979 the doctor at Loma Linda University told my mom that if it didn't go away before puberty it would kill me. I had a few spots since I was born and she was like "I don't think so" and for the following 12 years I really received no treatment. My mom cut off milk and other things that "made me red", I would take oatmeal baths and I tried to hide my body from the world.

Then lets jump to 1991 because any one of us can fill in the years of pain and suffering in the middle!! I went to get my "spots" checked on because they were taking me over. The dermatologist was so happy to see a spotted person!!! He rubbed his hands together and asked if he could bring his colleagues in. Well needless to say I had 15 doctors and students crammed into my little room scratching and asking questions. I got scheduled for my first bone marrow biopsy and proceeded over the next 6 months to become stable with medication.

1995 found me giving birth to my son (when the doctors didn't think I could conceive) and that quickly followed with the birth of my daughter in 1997. I did not take any medications for 3 years and in November of 1997 I was ready to die because I was so sick, when I found TMS. Linda Bucheit took my call and I believe saved my life. I went back to the hospital that dealt with me in 1991 and they diagnosed me (based on gi biopsy and symptoms) with systemic mastocytosis. I now had another name to my hell.

Well after the WHO criteria came out for diagnosis I really didn't fit the mold so to speak and I decided why worry about the mold, I have SM and nothing is really going to change that. Then in 2006 I started having trouble walking and by the spring of 2008 I was ready for the grave. Lord knows I figured I would be there any time. I took the big step and decided to go to the Mayo Clinic and see Dr. Butterfield.
He is a wonderful man and with my previous tests being inconclusive (1997) bone marrow biopsy was stained wrong!! He ordered a 3 day series of xrays, tests, and a bone marrow. The hematologist I saw there was horrendous stating " I think you only have spots and don't have SM" Well I was happy for about 3 weeks. I mean he said I probably didn't have it, my mind refused to review my symptoms or my journey. So I went back to Mayo to meet with Dr. B and get the results of all the tests. He sat there so calmly reading from the computer, bone marrow involved greater than 5% mast cells, + c-kit mutation, unable to test for Jak 2 mutation, bone scan- osteopenia in spine and osteoporosis in left hip, on and on he went. I am sitting here alone, thinking OMG why did I ever believe that other doctor and give myself a little bit of hope. Needless to say I barely made the drive back home. Crying all the way. Wanda in Texas was my lifeline this time. Talking with me and comforting me from thousands of miles away!!! Wanda is the first person I ever compared spots with, and she has been stuck with me as a friend ever since!!

So now I have take a leave of absence from my 1 job and I work part time with the other. My job as my hubby put it was to get healthy, work out, and find time for me. He would like me around for a long time. I am on aspirin, claritin, doxepin, gastrocom, viactive, MVI, omega 3's, And have found life a little easier to live. The change in medications was life changing for me. It gave my part of my life back. I also stand in a NB-UVB light box for the spots. I had one installed in my house, so no more doctor appts. Life is getting better, day by day. Well that is my long drawn out story!!!

AHHHH the holidays can be so trying...

So being that it is snowy and well below zero here, I decided to take on the monumental task of making my annual fantasy fudge and peanut butter balls. I love doing this every year. My husbands clients have received homemade fudge from us since the inception of our business in 2000. They have come to expect that fudge delivery is the week before Christmas.
So with 3 batches done and 3 batches to go I sit here aching and flushed. My body didn't like all the work I put in today and my mast cells are crabby with something I ate.
Maybe with just something I did, they get crabby no matter what I do!!! Winter is usually a good and peaceful time for my mast cells. Not this year. Then again there has been lots of "not this year".

So what do you do when a teenager says to you "I can do what I want and you can't tell me that I can't" Whats with that???? All I said was do your homework... Well I just shook my head and walked away. When dad got home, suddenly its time to do homeowork. Funny, not as much talking back with dad, thats what makes my hubby and I a good team!!!!! Good cop/ Bad cop, we switch off every now and again.

Off to package the fudge for tomorrows deliveries.

Not me Monday second installment

Well I didn't have a house full of people this weekend for an early Christmas. I did not eat more than I should of, nearly putting me into a food induced coma. I didn't yell at my kids for messing up the house before the guests arrived. I did not over indulge on wine Saturday night at the company Christmas party. I most certainly did not swell up like a balloon because of said overindulgence. And you know I most certainly would never insult my mother in law for being late again and leaving early to the family get together.
And I would never leave opening my presents till last because I know they are clothes, and after said weekend I don't want to look at clothes that probably won't fit. I didn't cry when said beautiful clothes were indeed beautiful, and shrugged off trying them on because I did not call myself fat.
My daughter will forgive me for not yelling at her when I got frustrated because she is on crutches and can't clean up after herself. I didn't shrug off my sons swollen finger and just taped the broken finger next to another finger because the doctor wouldn't do anything about it anyway.
And finally I am most certainly not just sitting here in my living room on a sub zero degree day, with a long list of to do's and dreaming of crawling back into bed. That is certainly NOT ME!!!

Tough Thursday

Well out Christmas shopping and getting the groceries and sloshing through the snow left my bones a aching, and my feet a crying. My skin is beat red, my spots are pissed, and my body feels like it has been hit by a mac truck. All in the name of this wonderful holiday we call Christmas. Whatever happened to the simple times when a handmade wooden toy was the cherished gift. Or gesture or hug meant so much?? Now its ipods, itunes gift cards and running from store to store to find just the right thing.
I think we had it right last year, we went to Hawaii and spent 12 glorious days relaxing and sightseeing the 4 islands. Tremendous fun was had by all, and I have never had such a relaxing holdiay. AHHHHH maybe next year. This year its Vicodin, antihistamines (extra), gastrocom and a large bottle of wine....

Worse Wednesday

Well I definitely woke up on the wrong side of the bed this morning. I started the day out crabbing at my kids and itching from head to toe. My masto reared its ugly head most of the day. Itchy, crabby, bone pain, stomach issues, to speak nothing of the frequent trips to the bathroom!!! 50 of benadryl and all my masto meds couldn't put me back on track. I sit here miserable wishing I had another persons body if only for a 24 hour period.
Then I think about well what if that person had cancer, or was bald, or stuttered. Would I be any happier?? Would I feel better?? I don't know, because I am me, I am spotted, and I have a rare disease that rears its ugly head during times of stress. And yes I am stressed with the holidays coming, and 20 people coming for dinner at my house on Sunday, the company party on Saturday, and the book club party on Friday.... So yes stress is currently my middle name.. but so is itchy!!!!
Tomorrow is bound to be better, dear Lord, help me to see it that way.

Let it snow, let it snow, let it snow!!!

Well 2 more inches of snow and of course the dog needed to go out nice and early to do his business. The cold makes my spots angry, and the kids grumpy. What a combination. My 13 year old son decided last night that his mom..... well lets just say he snuggled, sat and chatted with me and pointed out how he wears the mastocytosis society bracelet every day. I think for a while I was cool to hang out with??
He told me how he tells his friends about his moms spots and how that its a disease so don't make fun of her!!! I was in tears, just listening to his explanation of my suffering. I work really hard to shelter the kids, and with the expansion of my disease this summer, they are no longer as sheltered as I would of liked. But wow my son is amazing in so many ways!!
My daughter and I spent the morning in the Orthopedics office. He broke a bone in the side of her foot during her gymnastics floor routine on Saturday night. She also has a fractured big toe, we figure she did that 3 weeks ago!!! She is one tough girl. Amanda finished her floor routine and placed 2nd in the event. She has to wear a special stabilization boot for 4 weeks. The doctor doesn't feel there is anything wrong with her bones. Thank goodness. I am always worried that my kids will end up with Masto. That scares the bageebies out of me!!
Well off to work, lots to do today!!

Not Me Monday the beginning

I didn't decide to start blogging so I could vent about life to people who might understand. I didn't decide to start blogging to persuade people to understand that people can be sick without "looking" sick. I didn't use my daughter as an excuse to take a nap in the middle of the day on Sunday. I didn't forget to take my meds, making me miserable for the last 2 days. I didn't snap at my husband for not moving fast enough to suit me. I would never tell my daughter to suck up the pain of her broken foot because I was tired of hearing about it....NOT ME.