Living with Mastocytosis

Still kicking

Published on 2008-01-29 18:52:00

I have not died, I only have dial-up connection to the internet just now.Healthwise, I am about the same as I have been since I've been receiving treatment by the oncologist and he has me on the mastocytosis protocol. Altogether, I take about 14 pills a day. Unless I take more.AMDoxepinNexiumTagametWellbutrinCymbaltaClaritenPMDoxepinTagametSingulairLevsinAtavan (2 or more)Darvocet (pain is worse at night)GABAGABA is an amino acid that really helps to calm and to sleep, which is important since

Government: FUBAR

Published on 2007-07-09 23:11:00

I had my blood tested last Thursday. I'd started having some stomach problems and the rashes and itching had gotten so bad I could not tolerate it anymore. My rashes had turned into sores, they had gotten so bad.They took about a quart, it seemed, so I hope it shows something.I see the oncologist again on the 18th and I'm hoping he will have found some way for me to get the tryptase levels tested.My internist heard from Dr. Robyn at the NIH and her office is telling me that I have to have the

Kinases? Oncogenesis? Tyrosine? What language is this?

Published on 2007-07-01 01:28:00

Here it is:For example, the NIAD researchers recently discovered that patients with a particularly aggressive form of the disease have a mutation in c-kit tyrosine kinase; such patients respond spectacularly well to the cancer ‘wonder drug’: imatinib mesylate (Gleevec). However, the most frequent mutations—those in c-kit D816—are relatively resistant to imatinib. “If you don’t find the 816 mutation you can tell parents that their child’s chances are pretty good,” says Metcalfe. T

The Purple Chicken

Published on 2007-07-01 00:57:00

Back on April 13th, I posted how much better I had felt for awhile after finishing a Z-Pak (zithromiacin antibiotic) for a sinus infection.Well, when I went to the clinic at the end of last month, the doc put me on a 10 day round of amoxicillan, as we suspected that the sinus infection had returned. It's hard to tell. While I used to have a temperature of less than normal by a degree or two before I became ill, I now run a low grade fever all of the time now. The doctor told me this was norma

Some optimism...

Published on 2007-06-01 01:23:00

I had my appointment at the free clinic at 6pm this evening. 4 1/2 hours later, I finally saw the doctor. But, I'm not complaining. I am very grateful for every one of those fine people there who are all volunteer. God bless them.Best of all, the doctor was a retired pediatric oncologist who actually has had a systemic mastocytosis patient!! Unfortunately, it was a little child and my heart immediately went out to him. I was afraid to ask if he had survived, as the way the doctor spoke of him I

Still hangin' on

Published on 2007-05-24 22:58:00

To my internet connection, at least for now. Trying to get to a point where I can sell some of my stuff on ebay. I have lots of stuff. Way too much stuff.Still waiting to hear back from NIH. My doc mailed the referral letter almost two weeks ago, so not time to start worrying yet. Waiting on Social Security. Waiting on long term disability. Waiting, waiting, and running out of money fast. Running out of time to catch up on my mortgage payments. Waiting and running out of time and money.

Dr. Akin and U of Michigan

Published on 2007-05-04 20:18:00

Dr. Akin did reply promptly and was very helpful. U of Mich does bill your insurance for the tests and does not pay transportation costs but he says there are organizations to help with such costs which TMS has info about. He suggested I contact them for info about an NIH study.Not having insurance, U of Mich was not a good match for me. I contacted Valerie Slee who is over Research at TMS (The Mastocytosis Society) and right away she put me in touch with Dr. Robyn who is over a similar study fo

Ruined

Published on 2007-04-28 02:31:00

I received a wonderful birthday present on April 20th. A letter from The Hartford informing me that as of the 17th, my meager benefits were terminated. I no longer have any income whatsoever.The decision was fraught with errors, from what my job title had been to my diagnosis. They had mastoiditis, which is an inner ear infection. My doctor assures me that she has it clearly stated in her notes that I have systemic mastocytosis and am permanently disabled from any type of work.Knowing not what t

In Memoriam

Published on 2007-04-18 03:02:00

To Life.

For now...

Published on 2007-04-17 04:51:00

Ever since my accident, the treatment for which ended up causing my mastocytosis, I've had panic attacks. I had three, at least, the night of the accident, and I've had about a dozen since, in varying degrees.About a dozen in almost two years does not qualify as often, so when they hit, I'm frightfully taken aback, which, I think, is an excellent way of putting it. I am hit with sudden, unaccountable fear of nothing in particular, everything in general. Sometimes it escalates from something r

Baaaaack!

Published on 2007-04-13 20:14:00

Sorry for the neglect to this blog lately.Here is something I think is very interesting. For about 2 weeks after I finished the Z-pak of antibiotics, my mental dysfunction cleared considerably. Does anyone know why or why it would? I have no idea. I don't even know if it was connected, but it was definite and very noticeable.During those two weeks or so, I also had almost no days of myalgia and the fatigue disappeared.I don't guess it's possible to remain on anti-biotics all of the time, is it?

Not really, and yet...

Published on 2007-04-03 00:14:00

Summer makes me drowsy.Autumn makes me sing.Winter's pretty lousy,But I hate Spring- Dorothy ParkerActually, I've always loved Spring. It is the season of my birth, and every year since it has seemed like the season of my own rebirth. Until, that is, I developed a disease where my immune system is on overdrive all of the time. And until Spring no longer springs but pounces like a lion with everything, and I do mean everything, blooming all at once! I've never seen a Spring like this that I can r

Risky

Published on 2007-03-21 01:14:00

I don't have much time for blogging right now because I'm tending to my little 16 year old shih-tzu, Risky. He has had bad arthritis in his back legs for a few years now, in addition to the after effects of canine vestibular syndrome for three years now, displays some symptoms of cognitive dysfunction syndrome and has gone blind in one eye with cataract in the other. In other words, he's very old.He has to be sedated to be groomed. Only 1/4 of a tranquilizer, barely a speck. But, he has alway

Never lose hope!

Published on 2007-03-10 19:40:00

I'm doing fine right now. Trying to get some things done while I can. Finished the anti-biotics and they really helped a bunch.

Petition

Published on 2007-03-09 01:34:00

Sign the AARP petition for affordable healthcare and prescriptions here.

Pain, pain go away

Published on 2007-03-07 00:30:00

The myalgia was so bad that the Darvocet only eased it some so I had to stay still or feel the pain. I finally fell asleep around daybreak, only to awaken with excruciating bone pain at 9:45am. It was agony.I had to take another Darvocet and slept all day. Got up about 4:30pm as my family had been calling all day and their calls finally woke me up. By 7:30pm, I had to go to bed again and slept until 11:30pm. Still in pain, it seemed to be mostly myalgia but now seems to be turning directly i

Miserable ass

Published on 2007-03-05 19:54:00

So, Wednesday was a fairly good day, though I still didn't feel like doing much of anything. Started on the Clariten that night and doxepin on Thursday and I was sleepy all day. Then on Friday, I became possessed by Satan.Geezuslouisis was I ill-tempered! Seriously, I was possessed by Satan. Mean. Rotten. Hateful! I probably could have chewed puppies and kittens.I thought it might be the doxepin but might wear off after a couple of days once I adjusted. Its only 10mg. So I laid off of t

Sunshine and Starbucks

Published on 2007-02-28 16:45:00

Whoohoo! Woke up this morning at 9a.m! I was still very achy so I stayed in until around 10a.m. but it was so good to wake up in the morning for once.I'd had to take another painkiller at bedtime and once more during the middle of the night, but managed to get enough sleep in the hours of darkness. Thankfully!Ran out and got a biscuit and a grande mocha frappichinno as a special treat. It was a beautiful, warm day and I just stood outside and soaked up the sunshine for a little bit. It felt good

Another bizarro day in the life

Published on 2007-02-27 21:37:00

Except for the general fatigue and malaise, I've been feeling pretty good the last week or so.My sis and my niece dragged me out into the world Friday and Saturday and it was so wonderful getting out to a real restaurant and the mall and being around my two beautiful nephews. We had a great time and except for the usual rhinitis, I didn't have any problems at all.I had run out of ranitidine by Saturday night, so I missed two doses, then forgot to take either the ranitidine or the Prilosec Monda

Wow!

Published on 2007-02-27 21:13:00

Wowzers, we are getting about 70 hits a day here now. Hope folks are finding the linkages helpful. Please feel free to leave comments. I'd really like to hear from you.

Whining again

Published on 2007-02-24 04:18:00

Well, I wasn't posting because I was sick until I wasn't posting because I was feeling pretty good.Unfortunately, one lingering side effect from going through a long phase of being sick to the point of taking to my bed at all hours around the clock is that my circadian rhythmn gets all screwed up for weeks on end afterward. I just haven't been sleeping at night, for the most part. Even when I take something, I cannot seem to get sleepy until the sun rises.So, I end up sleeping most of the day,

Perking up

Published on 2007-02-15 01:11:00

I'm coming out of a bad spell with my tummy and massive fatigue. Feeling better today and will try to pick up with some posts in the next while.I want to add a list of medications commonly prescribed, as I see that a lot of people find the site on just such a search. Of course, only your doctor can know what will be best for you, and it will be with this caution that I'll list H1 blockers, H2 blockers, etc. I advise all to look to the very bottom of this blog for the info sheet from The Mastocyt

Me. Lately,

Published on 2007-02-12 05:05:00

Itchy witchy

Published on 2007-02-07 02:17:00

Aaaarrrggghh! It's the middle of the night and I'm up again, this time because of the itching. There's always one symptom or the other that's giving me hell. Who knows why? It could be the stress of seeing the doctor, though it wouldn't be stressful for any normal person. She is a very lovely and caring doctor. I didn't feel stressed but that doesn't mean anything to my body.Afterwards, I accompanied my 82 year old mom to her doctor and basically napped in the waiting room. I get so tired from n

Atlas Lifted

Published on 2007-02-03 23:15:00

Taking Cymbalta for a week now has really helped me get my head screwed back on better, and it has lifted the immeasurable heaviness that seems to sit on my shoulders when depression grips me. The fatigue is still around, but it is easier to bear without the weight of the world on my shoulders. I've gone from sleeping with a few hours of wakefulness to being wakeful with a need for two two hour naps a day, which might sound like a lot, but is a vast improvement. Most days I have awakened fairly