Mastocytosis- Bringing Awareness through my Experiences

2012 Update

2012-01-31T15:19:00.001-05:00

I don't really have anything major to report. I wanted to check in with you who read my blog, and let you know I am still chugging along. Just still itching on legs and backs of arms....especially at night. I have had some flushing on my torso, again, especially in the evenings.

As for diet and products in my home, I have a fairly natural approach to both, avoiding packaged foods, plastics, and added perfumes, flavorings and dyes.

Whenever we go to the local Chinese restaurant, I always get the itchies. Also, I like to swim in the pool, but limit myself to twice a week, also due to irritation and itching. I have seen no improvement with Claritin or Zyrtec. If I have a really bad spot of itching, I will apply cortisone, or take a Benedryl if it is near bedtime.

So, that's the latest. I would love to hear from you!

Oh brother...

2011-04-27T19:44:00.000-04:00

I have been having some severe itching on my arms lately. I saw the dermo 2 days ago and she confirmed that the UP is spreading to my arms. I said a bad word in front of the doctor. And she was really sweet about it, said it's ok to be upset. I had resigned myself to spotty thighs. I don't go showing them off much at my age anymore, anyway. But my arms, on the other hand, I am really quite proud of. They are strong and shapely, they look good in the summer. Now I will be checking them for spots. I wonder if some sun this summer will help?

2011 Update

2011-04-20T00:28:00.001-04:00

Not much has changed with me. I have the occasional itching, the occasional flushing on my chest and abdomen...spots still there. I have gone back to using some perfumes, I have relaxed about a lot of things. I hate shorts weather, tho, as then I am reminded of the spots.

I know I shouldn't complain. I mean really. I have it easy compared to many I read about.

I am going to see my dermo next week, just to for a look-over and conversation about everything.

I just wanted to check in as I see there are still a few visitors a month here. Feel free to post a comment and say hi.

Update-2010

2010-04-14T01:42:00.000-04:00

Things are going well for me. I still have the spots on my thighs, and I still itch a lot at times. I recently developed GERD (what a stupid sounding name, for such a painful condition!!!), which I wonder if it might be related to the UP...a lot of people with mastocytosis have digestive troubles. Maybe it is just stress, as it is for most of the population!

We moved back to the west coast, so I have let my docs here know about my diagnosis. They don't seem to think it is a big deal, which is kind of nice.

As for diet and lifestyle, I am still doing pretty well. Avoiding alcohol (but not totally- and champagne really makes me itch), perfume, and chemicals in general.

Depressing discovery

2009-03-09T08:17:00.007-04:00

About a week ago, I discovered that one of my triggers is chocolate. WAH!!!!!!

I guess this is not so strange, as for most of his adult life, my father has been allergic to chocolate, but it makes him dizzy and throw up. Me, I get the itchies, this last time on my elbows, bad enough to leave marks afterward.

I normally am not one of those people who needs chocolate. My husband eats a square or 2 of dark chocolate every day. Mostly I just watch him eat it, as it does not appeal to me all the time. But, the other day, it just seemed that it would go really well with my little cup of espresso...within 2 hours my elbows were bugging me like crazy, and had red welts on them....not hives exactly, not puffy, just red. SO, I can conclude that I should stick to cheesecake and skip the Death by Chocolate--ahaha!! There, my first anaphylactic shock joke!!!

On the subject of static and fabric softeners:
When the static reached its highest point, I felt like I was going through some sort of negative reinforcement experiment, except it involved kissing my family, petting the cat, and opening the car door. Confusing, to say the least.

So I went back to dryer sheets, and am much happier. I have not noticed any difference to my skin. Will go back to my natural alternatives in a few more weeks when the warmer weather is here to stay.

where did they go?

2009-02-04T08:24:00.005-05:00

Went to bed last night, and noticed that the spots were almost invisible. I also have not had very much itching lately. Why? What did I do? I am positive that the spots will come back soon, probably right now as I talk about them...this is a really big deal for me as I am already dreading summer and shorts---what if it is not that bad after all?

Changes I have made:
no more dryer sheets
no perfumes
no alcohol (I think this is the main one, unfortunately!)
less meat/ no red meat
less nuts (although yesterday I did get cozy with the jar of peanut butter)
home-made bread past 2 weeks.

Speaking of home-made bread, besides causing me to gain 5 lbs (you have been warned), the Artisan Bread in 5 Minutes a Day book is simply the best thing that has happened to our family in a long time. We love good bread, having lived for a couple of years in France. Nothing is like a good baguette, and it is near to impossible to find here, or it costs $4 a loaf.

I ate lunch at a friend's house a few weeks ago and she served these beautiful, crusty, light, amazing loaves of bread that I thought were impossible for someone like me to make. I ate far too much (this is where the 5 extra lbs began) and immediately ordered the book from Amazon.

The recipes have proven to be EASY, FAST, and DELICIOUS. Everyone at home is eating the bread, and making comments like, "ooooooh I would like some of your bread". This, coming from kids who normally are indifferent to food unless it has a cartoon character's endorsement, is pretty cool.

So although I realize that I need to slow down on my own bread consumption and hit the gym, I LOVE this book and the bread is literally the best thing ever. I hate also to give away my secrets, as I have all these plans for impressing my friends with fresh baked bread. So, friends, ignore this posting and act impressed when you eat my bread, ok?

not much news

2009-01-25T10:28:00.003-05:00

Not much news, not many changes....I have not noticed much of an improvement. I am feeling lazy and unable to cope. The spots are still there, the itching has lessened. I have to say that stopping drinking (I was a 1-2 glasses of wine a night drinker) was one of the best things I did since quitting smoking all those years ago...I hardly even miss it now.

Granted, I don't do much socializing, but even if I did, I would be perfectly happy with a seltzer water or a diet coke. The differences I feel include loosing 3 pounds without trying :) , more energy at night for putting the kids to bed, more patience, LESS headaches --I used to take tylenol almost every day for a headache, now it is a couple of times a month! It makes me sound like an alcoholic! I did look forward to a drink, even need a drink, but was rarely ever drunk. If someone had told me I would feel better without alcohol, I would not have believed them. But I do feel immensely better.

In addition, we are eating several vegetarian meals a week. This has taken very little effort, and I am also enjoying food more. My husband hadn't noticed, which is great. I think the last time we ate red meat was sometime in October...it has been very gradual, and so no one has really missed it. I am not going to dictate what my family eats, but just serve less meat at home.

I am also trying a new bread recipe--from the 5 minutes to artisan bread book----am eager to see how it turns out. Many of my bread attempts lately have failed, so am very hopeful!

It was hard to cut out nuts, and I am having trouble with it. I have had more luck cutting out perfumes---but have not noticed any difference in my skin. I still moisturize like crazy (eucerin) and put on the cortizone cream when I remember it....

Intersting show on Masto

2009-01-12T17:17:00.004-05:00

I just downloaded from itunes TLC's Mystery Diagnosis---Season 5 Episode "The Woman Who Kept Falling Down". The first half of the show is about a little boy who is finally diagnosed with Mastocytosis, after suffering from birth to about a year...very interesting show, and I will share it with my family and friends.
While fantastic that it was on t.v. and brought awareness of the disease to the public, it is a bit depressing that it was a show entitled *Mystery* Diagnosis...it said that fewer than 200,000 people have sympotoms of the disease....I wonder how many of us never know that we have it??

More on Static and Laundry

2009-01-06T10:53:00.005-05:00

I slid my cat away from my feet the other night and actually saw the sparks jumping from her fur...so now I have a humidifier running all the time.
A cup of vinegar in the wash helps soften, and then I found these things on the web, made in Canada, that you keep in the dryer. It reduces static a lot- enough to make a difference. They are called Static Eliminator, and well worth ordering--about 10$.
I miss the fragrances. Maybe it's a girl thing.
I have done so much laundry these past weeks as we have had lots of guests, and then everyone (except my mom) got tummy bugs---oh, the cleaning and laundry have been non-stop.
I was so happy to get back to work, now Sophie is home sick again- it's like I can't get a break.

Managing my spots

2008-12-24T14:21:00.002-05:00

I have had a very bad cold the last few days, and have been really out of it due to lots of cold medicine. The benefit, besides sleeping very well at night, is that my spots have diminished remarkably. I was thrilled the other day, after having 2 days of constant medication, my legs actually looked really nice. Not that the spots are ugly. They are not big enough, or numerous enough to really upset me. But if I could find a med that perhaps does not make me so sleepy, I think I will be able to manage how the spots look. The steroid creme has also helped- I put in on every other night, as I feel that it is a very strong medicine for every day.

When this cold is over, I will start Claritin, as Benedryl puts me to sleep, and makes me dehydrated and light headed in the morning. Not a good combination for starting the day!

I am really disappointed in the nature of the posting on the masto list-serve. What a bunch of maniacs- so angry! I would have thought it a great forum for sharing, but it is vitriol. Such a shame. I guess these smaller blogs are a good way to check up on others with this condition- I appreciate all the comments from fellow masto-tonians. Masto- ites? ;)

I wonder if any adult has ever been "cured" of this?

How can I soften my clothes without dryer sheet or softener? Static? I wonder if vinegar would help. It seems to do everything else...

Well, Merry Christmas, all!

How I feel now

2008-12-19T19:31:00.002-05:00

Oh, I am beginning to think I am a very bad person. Or just very very resourceful. I seriously bounced back. To the point of losing sight of the important things. I get very panicky when I travel and we just traveled to my sister in law's this weekend, through ice and rain. I was way too stressed about everything from packing for the kids to holding the mail and paper.

When we arrived, my mother in law asked me how I was feeling, and I had forgotten how upset everyone was--it wasn't just me! I said fine, and she said how relieved I must be-- a great reminder of how lucky I am. I want to hang on to that feeling. The feeling that I am lucky and that every day is a great day.

As for symptoms, I have itchy legs and arms most of the time. I have been thinking a lot about when it started, and I think it was about 3 years ago. Since my daughter was born. I am pretty sure of that. I think when the spots started I thought they were eczema so I used moisturizer and payed them little attention. I think they were small to begin with. I used to use a loofah on my legs and lots of perfume in the bath and after--also would wash clothes with harsh detergents...now I am almost perfume free- how boring. But if it makes a difference, that will be great.

Will keep at it- am considering small changes in my diet, like removing nuts, then eggs, then milk...but I am so dependent on milk and yogurt and eggs and cheese it will be very very hard!!! Nuts first!!! That's easier.

Results

2008-12-17T13:14:00.003-05:00

I went in today to see my doctor and the results are very good. I do not have any abnormalities in my bone marrow, and the tests that they have done on my chromosomes are normal, except for one test they are still waiting for the result. They found a little mutation (my super-mom gene, probably) but the doctor says for me to not worry about it at all. He will call if there is a problem.

He also said that I must manage my symptoms on my skin, and try to figure out what are my triggers. He said it is very very unlikely to ever turn into systemic.

I am in shock, as I was convinced this morning that I was going to be diagnosed with systemic. Every itch and pain felt like a sign that I was in trouble. I am especially relieved, and thankful, that I do not have to worry anymore. I suppose I will always worry, but not in the same way. Not with the same intensity.

I am also extremely thankful for family and friends, who have supported me, read my blog, and sent me love and prayers as I went through this stressful time. God bless you all for giving my your love, prayers and support. It helped, every little bit of it helped.

I will work on awareness and be very vocal about this condition, as I have now read a lot about it and I feel especially for the moms whose children have it. Life must be very hard for those families. My thoughts and prayers are with them now.

one more day to go

2008-12-15T20:31:00.002-05:00

I go in for my results from the bone marrow biopsy on Wednesday, and I will post them as soon as I can.

We did make it to church on Sunday, and it was very nice. The prettiest little church with a real bell and beautiful stained glass windows. The sun was shining and the organ music (Chopin) was lovely. I felt like crying the whole time. But it was crying in a good way. Happy/sad crying that feels good. I almost always cry in church, and I am not sure why. I should remember tissues and I never do.

I am just waiting waiting waiting. Thank goodness for family and friends. My husband was being especially silly today, and kept me laughing to the point of helplessness. He is a wonderful person. And my best friend called and I always laugh with her. How blessed I am.

I am happy?

2008-12-12T10:52:00.003-05:00

This is what I have been feeling lately. Happy? Really?

I am in the liminal phase of waiting for a diagnosis...and yet I am happy. Really.

This is probably one of the most stressful times of my life, and I am not really thinking about all the bad things. I am half convinced that I just have UP, and half convince that I have systemic, and either way I know that I am going to enjoy my life! That is a wonderful thing for me to have decided.

A little religion.

2008-12-09T09:41:00.005-05:00

Here is a great photo of my 2 kids (on either end) and their cousin, who visited at Thanksgiving. They made a gingerbread house, which they demolished for dessert a few hours later. We have done a lot of fun crafts this year- from paper snowflakes to oranges stuck with cloves. I love giving my kids those warm holiday memories. It brings back all the fun things I did with my mom as a little girl.

I have had a few days to think about this and I am more and more convinced that I am being called to go to church.

Since we moved across the country last summer, I have not been looking for a church. It is too nice to sit at home on a Sunday in our pyjamas, make waffles and spend time together as a family. And I think that is important for us, as we are so busy during the week, that it is difficult to just be together and relax.

But I have felt that I need to find a church and I need to take my family there with me. I was sitting at soccer practice on Sunday afternoon, feeling that I had missed another opportunity to go to church, and a woman came directly to me and sat next to me. We started chatting, and I felt that I had met her before. She talked to me about her children, home schooling and her faith. I asked her lots of questions and she was totally present and open and kind. I felt like it was a sign that I needed to get my act together and get to church.

Then, that night, a very good friend called that I had not heard from since we moved. She said how much she missed us all and wondered if we had found a church yet. At that point I knew I heard God calling to me.

I know we all need this. This Sunday, we will go to the church I have had my eye on for a while.

All the things I am NOT allergic to

2008-12-07T21:25:00.003-05:00

Since I don't know what I am allergic to, I thought I would write a list (not complete, of course) of things that I am NOT allergic to:
hugs
brie
compliments
traveling
children
drawing
painting
sleeping
brownies
toothpaste
cats
email
reading
working
listening to music
kisses
cleaning
laughing
tea
chocolate
day-dreaming
singing
baking cookies
cutting out paper snowflakes
gardening
*my big brother*
loving.

epi pens and other handicaps

2008-12-05T10:36:00.002-05:00

Got my epi-pen 2 days ago. I had received the prescription several weeks ago, but have been putting it off. It feels like I have a handicap now. I never wanted that feeling. Certainly not when I feel fine, and am doing so well otherwise.

When I was in grad school, a nice guy took me to a restaurant for dinner. We were all dressed up, coat and tie etc...he spent the entire dinner telling me about his experiences with being allergic to nuts. He described in detail how he saved his own life with a straw after accidentally eating banana-nut bread. He carried an epi-pen. It was our one and only date. I have told this story several times as an example of what not to do on a date. I couldn't imagine living like he does, never knowing when you will ingest something you are deathly allergic to...now I am living it. And I have no clue what I am allergic to---at least he knew it was nuts.

I really hate the epi-pen. It is big, ugly and I know it is gonna hurt if I ever have to use it. I am resentful of being "sick". Afflicted is maybe a better word.

I checked out a list.serv, but found it full of recipes for chopped salad....nothing about masto...my disappointment and dismay was acute and almost comical...maybe will check them out another day.

Carrying on...

2008-12-04T15:51:00.003-05:00

Had a rather disturbed night due to discomfort from the wound site...I took a Benadryl at 11 pm for my nose (have a slight cold) and found that it really helped my legs. No itching, and the spots were not red but rather a faded brown color...this benefit lasted through til the following morning.

I took Benadryl to help me sleep many nights since my daughter was born in 2004. Actually from about June 2005 to Jan 2008...I would take a pill around 8 pm and be falling asleep by 10.30...I realize that it was also helping diminish the effects of U.P. So that is why I am not sure when it all started. I suppose it is the type of thing that creeps up on you anyway.

Many people probably go undiagnosed for years.

I think I am lucky that I know what it is. I am telling myself that I am going to be really lucky and just have it on my skin, not systemic.

I had this dream today that I would raise money for this disease. I imagined myself sailing in a laser competition (and winning) while raising money and awareness...So now I have something to shoot for!

Bone Marrow Biopsy Aspirates!

2008-12-03T19:40:00.004-05:00

Yes, it sucks in more ways than one.

I think the dreading it was worse than the procedure. I should have had something to calm me down, as I burst into tears as soon as it was over!

I got home, felt pretty good, a little bit of an ache. My crazy, wonderful neighbor locked herself out of her house and showed up just as I was beginning to feel bad. She really took my mind off of it, making jokes about my bandaged booty. Now, almost 6 hours later, the Novocaine has worn off and I am feeling it! A dull ache in my hip. Would love to have a couple of glasses of wine to take the edge off...oh well.

Now I have 2 weeks to wait, and I will go in and see the doctor for the results. He and the nurse were really great during the procedure. Lots of laughter and jokes, which made the whole thing go by more smoothly. When he started talking about how they use power saws in Orthopedics, I suggested we could switch topics to puppies or unicorns. It was pretty funny.

Tonight I am enjoying my kids, my husband, my home. Thankful yet again that I have all that I do in my life, as it makes it all worth it, so very, very worth it.

Thinking about symptoms.

2008-12-02T10:53:00.000-05:00

Ever since my diagnosis, I have been thinking about symptoms, of which I do not have many.

About 9 years ago, I noticed that when I sunbathed, I would get red spots on my thighs...it faded within a few hours, and I thought I should stop sunbathing. About 6 years ago, I did stop sunbathing. My skin was clear and I had no allergies, hives or anything, other than a stuffy nose at night (managed with Nasocort and salt water).

In the past 2 years, the red spots came back and did not go away. They did not bother me, other than cosmetically. There are not a lot of spots, but I wondered if they were perhaps something serious, so I went to a dermatologist. She said they looked like eczema, and gave me a steroid cream. I came back 2 months later and she gave me a stronger cream. I found that it worked while I applied it, but they came back shortly thereafter. I gave up on her.

My 9 year old son asked me what the dots were as we swam at the pool this summer, and I couldn't tell him. Last month (having moved to the east coast over the summer, new doctors, new beginnings), I decided that I should really get them looked at and solved.

My fantastic new doctor did a biopsy on the spot, and told me that she thought it was UP, and not to get upset by things I read on the computer....I guess she had seen it before.

Currently I have itchy thighs- it feels like wearing wool next to my skin. It is not enough to bother me much, I have no trouble sleeping. I don't like to wear tight jeans, I prefer looser trousers, as the rough material right against my skin feels prickly.

Other little problems that I have (joint pain, headaches, occasional hives) I have always attributed to other things. Now, naturally, I am wondering if that is related to Mastocytosis.

Having cried so much yesterday, the last thing I am going to do today is go there again. If I have had this for 2+ years already without it negatively affecting me, I can go on as before (just without my wine...). I will not allow myself to feel sorry for myself again. I have too much to live for, too much to do in whatever time I have here.

As for the biopsy, scheduled for tomorrow, I am less nervous about the pain than the results! I want to know the extent of the disease, and then I will move on with life.

Mastocytosis- Diagnosis 11-2008

2008-12-01T20:10:00.000-05:00

It has been about 2 weeks since I found out that I have Mastocytosis- definitely Uticaria Pigmentosa. I am going in for a bone marrow biopsy on Wednesday to determine if it is systemic. In all the days that I have know about this, today was the first day that I really broke down and let myself feel low. It was a day for crying and feeling sorry for myself, feeling afraid and alone.

I have spent countless hours on the computer, researching and reading about the disease. Probably frightening myself more than helping myself at this point. I just want to know what I can do, what a doctor can do, what a drug can do---the worst part is knowing that there is no cure.

That is where the self pity comes in...hard.

There are countless people in more dire circumstances than I, but that doesn't change the fact that I am different today than I was a mere two weeks ago.

I want to volunteer for a study- I want to be a part of the cure. I don't want to sit back and let this rule my life. I am going to blog this and hope that others out there will write to me and tell me about their experiences with this disease, or with life in general. I am going to tell my doctors, friends and family about this disease and raise awareness. It is all I can do for now.

That, and wait.