Living with Mastocytosis

Still kicking

2008-01-29T19:52:00.001-05:00

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.

AM
Doxepin
Nexium
Tagamet
Wellbutrin
Cymbalta
Clariten

PM
Doxepin
Tagamet
Singulair
Levsin
Atavan (2 or more)
Darvocet (pain is worse at night)
GABA

GABA is an amino acid that really helps to calm and to sleep, which is important since the itching is much worse at night.

Ok, gang, hang in there. I'll try to post occasionally but it's so terribly slow (the dial-up), I have to be having a very calm day to attempt it or I get aggravated. And we all know what happens with the masto when that happens.

Take care. Thank you for the concern. You are in my thoughts and prayers.

Government: FUBAR

2007-07-09T23:11:00.000-05:00

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 tryptase level test before I can be admitted into the NIH study. The lab work would be sent to the Mayo Clinic. And I would have to pay for it. But, I have NO money.

Seriously. I'm selling stuff on ebay to pay my bills.

So, I emailed Dr. Robyn with a nicely worded WTF? basically. I thought I was being considered for a DIAGNOSTIC study!? Do I have to have the 3 doctors diagnosis confirmed by blood work to enter a DIAGNOSTIC study??

And guess what? She emails me back that she's no longer with the NIH and will refer my inquiries to the appropriate panel.

Pointless. Hopeless.

Meantime, I've gone back on my antihistamines and am barely conscious most of the time. I had adjusted so that they hardly bothered me but now I've got to do it again.

But, thank God!! The itching is now tolerable. And I can breathe, mostly.

Kinases? Oncogenesis? Tyrosine? What language is this?

2007-07-01T01:28:00.000-05:00

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. The antibiotic geldanamycin (17-AAG), which inhibits Hsp90, is the latest recruit in the fight against mastocytosis as it destabilizes various kinases that are important in oncogenesis.

The Purple Chicken

2007-07-01T00:57:00.000-05:00

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 normal for masto, which was news to me, but since he has treated many masto patients, he would know.

Consequently, running a low grade fever all of the time doesn't assist in determining if I have another infection of some kind. But, since I had been more congested than is usual, which is still alot, and the mucus was, well, you know, ooky, more ooky than usual, I took the antibiotic.

Again, I have had the same reaction. I have felt better for more than two weeks now, since finishing the amoxicillan.

Has anyone else had this kind of experience?

I read somewhere about a week ago where masto was being treated with some kind of antibiotic and when I find it again, I will post the link.

As (my) luck would have it, the doc wants me to have a blood test to measure IgE levels, etc., but to prevent skewing the results, I can't be taking any of the anti-histamines. I have read many horror stories about masto patients trying to get diagnosed and having tests while they are asymptomatic resulting in the tests being negative. So, since I've been pretty much asymptomatic, I've been putting off the blood test.

The rashes never went away and without the anti-histamines, they have intensified greatly. About a week ago, the sinusitus and the rhinitus returned. Now, I'm having pruritus (itching randomly all over whether rashed or not).

I've continued taking the proton pump inhibitor every day but I haven't been taking the ranitidine and, amazingly, haven't been having the digestive problems, upset stomach, diarrhea or any of that. If I'm late taking the proton pump inhibitor (Protonix, now), then I'll start feeling quesy but once I take it, I'm okay. I've had little bout of diarrhea so far, which is a drastic improvement.

My mind was pretty clear for several weeks but I have been noticing a decline in the last few days. Struggling to find words. Forgetting stuff much more frequently. Scrambling words. Just yesterday, I was trying to mention a new local restaurant to my mother and instead of calling it The Purple Kitchen, I called it The Purple Chicken!! We laughed about 10 minutes over that one.

I'm going to give it a few more days before I go for the blood test. But, probably not much longer as the itching is really getting to me. If I'd had any sense, I would have taken the blood test before beginning the antibiotics, but sense is definitely robbed from me when I'm symptomatic.

Do any of you suffer these cognitive difficulties like I do?

Some optimism...

2007-06-01T01:23:00.000-05:00

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 got the impression that he may have not. Bless that child. I cannot imagine suffering like this as a child.

I had gone all prepared with info sheets about masto and the diagnosis of masto, plus my medical records from my internist and info about the NIH study (which I haven't heard from yet). While it was helpful, it wasn't even actually necessary as the doc knew all about mastocytosis! He examined my rashes, poked me here and there...I think he was checking my lymph nodes, liver and kidneys, and said that I had all the classic indications of mastocytosis. He has ordered a blood test and is going to try to find a lab qualified to do some of the other tests, like checking the tryptase level. He even mentioned that they may do a bone marrow biopsy.

For free!

God bless the good people at Taylors First Baptist Church who underwrite all these good works. I know I say that for myself and all of the other people at the clinic. Bless their hearts, also. You might think that you would see only the bottom of society at a free clinic, but you would be wrong. 95% of the people there were people just like me. Born and bred middle class, just caught with chronic conditions and found themselves uninsurable, and driven to poverty by the cost of healthcare and the deplorable situation we in the richest nation on earth have come to be in. I don't get political on this blog, but I just want to point out that every Democratic candidate for president has some form of a universal healthcare plan while the Republicans do not.

The doc was also able to give me free prescriptions for most all of my meds. I now am freshly replenished with hydroxyzine, Cymbalta, a proton pump inhibitor, loratadine, doxypin (which he uped to 25 mg), Singulair, and ranitidine. He checked my downward turning nails and I told him about the cramp like spasms I've been having in my liver area and he says that most likely I have an overabundance of mast cells in both my liver and kidneys, especially since I have wheal and flare rashes over the areas of those organs which are an indication of their involvement.

I thought that was interesting since I also have rashes in most of the areas where lymph nodes are in their most abundance, like around my navel, sides of my neck, inner elbows, inner knees, abdomen, etc.

Of course, I've thought of dozens of questions I should have asked since, but that is not unusual considering my brain dead status. Hopefully, with all the new meds, that might improve at least a little. The worse my symptoms are, the worse my brain functions.

Please continue to keep your fingers crossed for me, say a prayer, or keep me in your thoughts. I appreciate all the good wishes and they help tremendously.

I'd like to give a special shout out to Piia in Norway and Tiago in Portugal. I hope things are going well for you both and will continue to do so. Keep me posted and I will continue to keep you both in my thoughts. Let's hear from you, Tiago!

Take care, y'all.

Still hangin' on

2007-05-24T22:58:00.000-05:00

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.

I have the rashes and itching to keep me occupied. It's gone into overdrive. And I dare not use the corticosteroid to tamp it down since I know the doctors will want to see them in their full and festering glory.

I'm trying to keep a good perspective and not devolve into a depressed, overwrought heap but I'm out of all of my anti-depressants except for the affordable doxepin. I have an appointment with a free clinic on the 31st and they will provide meds, so I'm hangin' on until then.

Dr. Akin and U of Michigan

2007-05-04T20:18:00.000-05:00

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 for the NIH, and they do cover transportation and all testing and medication costs. Thank you Val and TMS and Dr. Akin!

Hallelujah!

My doctor is sending them a referral letter with my records for review in determination for my qualification for the study.

Keep your fingers crossed for me.

Meantime, I am still scrambling trying to find assistance resources while I try to get approved for Social Security. Got foodstamps, but do not qualify for Medicaid until approved as disabled by Social Security.

I was referred to Communi-Care which helps with medical expenses, but it is for the working uninsured. I'll try them and see what might happen.

Apparently, today in America, if you are too sick to work and can't afford your medication, until you can get approved for Social Security which can be time-consuming and very difficult, you may as well lay down by the side of the road and die.

Sorry for the pessimism. I'm trying really hard to not be that way. The stress of all this is making me terribly sick, not to mention having weather that is 80+ degrees one day and 55 degrees the next while I'm trying to run from DSS to SSA to doctors offices, etc. and both heat and cold are triggers. Plus, I can't even describe how difficult it is to fill out all this paperwork and talk to all these people when my brain is so foggy that I barely know my own name.

For example, I went to a free clinic to apply on 5/2/07. My DOB is 4/20/57. I signed in and was supposed to put my DOB. I wrote 4/22/07 because DOB had registered with me as today's date. AS IF 4/22/07 WAS 5/2/07! When this happens, usually I know I've done something wrong, but I have to stare at it for long seconds before it registers. Finally, I realized I was supposed to put my DOB. I wrote 4/20/07, thinking I had corrected it. Duh, no. Not unless I was 12 days old. I was too embarassed to change it again.

Then to the paper work. First up, sign and date form. I wrote 4/22/07 AGAIN!!

These are not the actions of a coherent individual. But typical of me these days, increasingly more so. My family is becoming adept at translating me.

If I'm trying to mention an individual, say Tom Hopkins, I'll more often than not have to say "his name is something like Bob Haskitt" and they have to guess until they figure out who I'm talking about.

If I'm driving to K-Mart, I'll end up in the Target parking lot wondering why the hell I'm there. I'll pull into a fast food place and drive right by the speaker and directly up to the window.

All of which is scaring the hell out of me. I'm afraid that if I don't have masto, then I might have brain tumor. If a brain tumor might also cause chronic itching, rashes, diarrhea, stomach aches, gastritis, rhinitis, sinusitis, bone pain, body aches and major fatigue.

But, I have no insurance and no money. If I cannot get into the NIH soon, I'll have no choice but to have to go to the hospital emergency room as an indigent patient, I guess.

Please pray for me.

Ruined

2007-04-28T02:31:00.000-05:00

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 to do, I contacted an attorney. They got me in right away, and we will be appealing the decision (which could take about 3 months) which will, in all likelihood, be denied. Then they will file suit. Which could take a year to be settled. A year!

I was shocked to find out how heavily the so-called justice system in this country is weighed now in favor of the insurance companies. You would be, too.

Meantime, I am too sick to work almost every single day of my life, so I cannot apply for unemployment insurance. All I can do is apply for Social Security disability, which I should have long ago. I have just been so sick most of the time that I just couldn't deal with it, but I have had days when I could have so I have no excuse. However, The Hartford had been pushing me to use an attorney they referred me to and I just did not feel right about it. It seemed like the wrong thing to do. They are a firm located in the same state as the insurance company, not my state. I was relieved, at least, to hear from several firms I had contacted, including the one I finally settled on, that that would have been the totally wrong thing to do.

Now, I have to file directly with SS myself and it will probably be denied at which time my attorney will step in. They also want to talk to me about the allergic reactions I had to the medications which sent me on this path to illness. I have an appointment Monday with that set of attorneys.

I'm trying to find out about medicaid, welfare, food stamps, food banks, whatever.

I expect to lose my house. Or have to file bankruptcy. Or both.

I am distraught beyond words.

I will lose my internet connection when the bill next becomes due. Afterwards, I will post only when I can from my mothers or sisters computer, I suppose.

I have found the clinical trial being conducted at U of Michigan by Dr. Cem Akins which is still recruiting patients for diagnosis and testing for mastocytosis and have emailed requesting information. My TMS support group leader is also working to find out information for me in regard to testing.

Has any of my readers ever participated in such a program? Will they pay transportation costs? If so, perhaps I can get a definite diagnosis. If not, who knows?

If you don't hear from me again, ever or in a long time, I hope this blog has been helpful to you and that you have found some information that was useful.

In Memoriam

2007-04-18T03:02:00.001-05:00

To Life.

For now...

2007-04-17T04:51:00.000-05:00

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 relatively minor, with my response being outrageous.

I just had one so while the medication (Klonopin)takes effect, I thought I'd write a bit about it. Tonight, or rather this morning, since I've been so stuffed up I've stayed up all night trying to get clear enough to being able to consider actually breathing well enough to sleep, out it popped from nowhere. I finally went to bed and five minutes later was struck by panic that I had not paid my phone bill. Up I flew to dress, find my phone bill, reassure myself that I had not received a cut off notice, even to the extent of going out in the pre-dawn to search my car to be certain. My heart was racing, and I was gripped by unreasonable fear. So what? I would have just paid and it would be back on. But, no, I was panicked. Panicked not just because of my phone bill, but that disaster was about to befall me. Not the disaster of lack of phone, disaster!

This time I did not think, specifically, that I was about to die, as I do sometimes when I have one. But, still, it was lurking there somewhere in the dark recesses of the fruitcake of my mind. Tonight, it was just some vague feeling of utter, unavoidable disaster that would surely devastate me or devour me in some magical, inexplicable way.

I found my medication in a frenzy and took one immediately. A whole 1mg, not a half as when I am only feeling anxious, usually from the itching or the inability to do the things I want to be able to do. Then I checked my phone again to reassure myself (again) that it was still on, as though that would convince me that all was okay. Then, I was suddenly terribly afraid that the Klonopin would react with one of my other medicines, although I know for certain it would not, being prescribed all by my doctor and all being procured at the same pharmacist who would likely have pointed out any potential drug interactions and having read all of the accompanying literature of all the medicines. Still, I had to drag them all out and read them again to be sure, and would probably be reading them all once again had I not made myself sit down and start to write this post.

They are the most bizarre occurrences. My heart races, I begin flying or flittering about, my hands start to shake, my breathing becomes quick and shallow, I feel clammy all over, my thoughts race and I think unreasonable things when I know better.

I take the medicine, then proceed continuing the bizarreness for a while still yet, eventually I can sit down yet proceed to twist my hands and sometimes my whole body into knots for awhile while I worry, worry, worry, about something so ill defined in my head that I cannot really adequately explain it, even now and even here. Gradually, my heart calms and my breathing becomes deeper. My hands stay jittery for a while yet, as now, but will soon become less so. The clamminess will ease and I usually come to feel quite cold as I am becoming now. The tension in my back and legs begin to ease. I notice that I am no longer gripped in fear, it is just hovering, and will soon dissipate.

I will soon turn up the heat, crawl under the covers, my twisted body will ball up and I will sleep in peace for probably too long, and too late, but I will be peaceful.

Until next time.

When it will roar back for some unknown reason. Perhaps I know the reason for today. Perhaps it is the tragedy in Virginia that has brought this irrational fear and panic to me tonight. A reminder that sometimes fear does have a reason.

Baaaaack!

2007-04-13T20:14:00.000-05:00

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? I'll have to remember to tell my doctor and see if she understands why.

After 2 weeks, it began to decline again. About the same time, everything bloomed and my allergies went nuts and all of my symptoms began to come back or get worse with a vengence. Rashes flared up badly instead of remaining just visible and mildly aggravating went to wild, red whelping and insanity inspiring, stomach and digestive symptoms worsened, increasing exponentially it seems. Today has been very bad. I'm about ready to go with the astronaut diapers or something.

My neighbor from across the street was sweet enough to mow my grass for me one week ago today. I had the fan on the heat pump running at the time, but all the windows and doors closed. There were tons of garlic patches in the grass this year since I wasn't able to do much in the way of gardening or maintenance last year and I could really smell it in the house but I'm so duh all the time I didn't think, hey, maybe I should turn off the house fan. I got a little cough-y and a little extra congested but I was okay until he knocked on the door and I opened it. Within 2 seconds, my head filled with mucus, my throat closed up, and fluid started flooding in to my lungs. Bless his heart, I think I scared him. I had to grab a facemask, jump in my car and get the hell out of there and to my mom's house who lives only a few minutes away. Where I proceeded to scare the hell out of her while I wheezed and hacked and tried to get the mucus to stop flooding down my throat and get enough air in me to avoid turning blue. Benadryl and Nasalcrom (which is just sodium cromolyn) finally got me under control, but, as always, its extremely scary when I have a major, massive allergic reaction like that.

In the last couple of days, all the rashes flared up at the same time, I used the corticosteroid ointment in more places than I should at any one time and that always makes me feel especially punkish for a day or two.

The fatigue has not been especially bad lately, though. I do get tired more and faster than everyone else, but I get tired after actually doing things, not just for breathing. Don't get too excited. I don't mean I get tired after doing things like a normal person does things. I mean, I go to the grocery store and collapse in exhaustion. I sort the laundry and have to lay down for an hour. But, at least I don't wake up too tired to move.

My little dog is better and I'm counting my blessings that his illness was during this little space of time when I felt pretty decent or I never could have dealt with it.

I can't believe that I'll be 50 next Friday, April 20th. It's really hard to fathom. But, I'm glad. It's much better than the alternative, as they say!

Not really, and yet...

2007-04-03T00:14:00.000-05:00

Summer makes me drowsy.
Autumn makes me sing.
Winter's pretty lousy,
But I hate Spring

- Dorothy Parker

Actually, 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 recall. A few daffodils peeked out and seemingly the very next day, every tree, bush, bulb, and flower burst forth like a beautiful, yet deadly (to me) volcano of color and pollen.

We've had three 80 degree days already with another on the slate for tomorrow. Yet, it's likely to be freezing on Easter Sunday a few days from now.

Nothings happening to the climate, my ass. Way to go, (surprisingly) Supreme Court.

Meantime, as you can probably tell by both the quantity and quality of my posts, I'm living on double doses of Clariten and constant doses of Benadryl on top of everything I have to take already.

(crosspost)

Risky

2007-03-21T01:14:00.000-05:00

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 always been a snapper and now he'll snap if bothered at all, even though he's on more medication than I allow myself to spend on myself. Not that he has any teeth, unless he catches you with the stumps of his jaw teeth, and then its just the pressure of his jaws that hurt. Still, since he is a shih-tzu, he must be groomed or his face becomes like a sheepdog, which can't happen as it irritates his eyes. So, to be groomed, even by my sweet and gentle groomer, he has to be tranked a bit.

Afterwards, he sleeps, and sleeps. Usually for 24 hours. Last time, he had trouble getting back to walking for about 3 days. This time, its Wednesday, he was groomed on Thursday, and he still will not use one of his back legs. I took him to the vet on Tuesday for an injection and a new medicene. I'm having to work with him to get him to use his leg, helping him walk, taking him to his paper when he has to go or everytime I think he might and holding him up, massaging it, putting heat packs on it, etc.

He goes nuts barking and whining if I'm away from him more than a few feet for more than a few minutes and if I turn my attention away to anything other than him. Like if I pick up my laptop. The only reason I'm able to write now is because he's sound asleep at my feet after taking his new medicene.

So... blogging vs. devoted companion of 16 years who needs me. Hmm. That's the definition of a no brainer. I'll be back as I can when I can.

I mean, look at that face!

Never lose hope!

2007-03-10T20:40:00.000-05:00

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

2007-03-09T02:34:00.000-05:00

Sign the AARP petition for affordable healthcare and prescriptions here.

Pain, pain go away

2007-03-07T01:30:00.000-05:00

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 into bone pain, so I just took my last Darvocet. I'm really hoping to feel better in the morning.

Miserable ass

2007-03-05T20:54:00.000-05:00

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 the clariten instead and Satan was exorcised by Saturday. Perhaps it was the combination. I've decided to keep up with the doxepin for few more days and then try the clariten again. I can't tell that it's helping the rashes though because they have been flaring up again.

I didn't become congested anymore than usual without the clariten. But, I slept very fitfully Friday night and woke up feeling badly. I had to cancel the dogs appointment as I didn't even feel up to taking them to the groomers. Sunday I felt worse and decided that I needed to finally admit that I apparently have some kind of sinus infection that I've been suspecting for weeks. I've been running a low grade fever and just haven't felt good even on days when I haven't had any significant symptoms for weeks and weeks. I've had bad, ucky yook coming out of my left sinuses (which has a deviated septum) and headaches on that side and ear aches and periods of almost deafness on that side. But, at times it would seem better. I had meant to mention it to the doctor when I 'd seen her but my mind is so bad I had forgotten. I hadn't written it down like I had everything else (otherwise I wouldn't have been able to tell her anything).

I called today and got a Z-Pak and took the first dose this evening. Now I have terrible myalgia but I don't know if its connected. It started immediately after taking the dose. I mean immediately. Within minutes. That doesn't seem reasonable, but nothing about this disease seems reasonable, so who knows?

Anyway, the myalgia is so bad I just took a darvocet, so I'll feel better soon I hope.

I have some letters from a reader I want to post, but maybe I'll feel up to fooling with it in a day or two.

Oh, one more note. Very, very early Sunday morning I had another panic attack. I've only had about 5, all since after the night of my accident. I'd had 3 that night while in the emergency room, beginning when they had me in that big head contraption to keep me from moving. I started to feel like I was suffocating even though I could breathe. And that is how they have been everytime since. I had slept a few hours, awakenend, and after a few more hours I felt like I could sleep again. So I went back to bed and I was breathing find, I wasn't stopped up or anything, but all of a sudden I became convinced I was suffocating, although my rational mind kept telling myself that I could breathe, I was breathing, but it didn't matter. I was suffocating. I got up and took a Klonopin which the doc has given me for them (and also for restless legs which I occasionally have). Then I went outside on the porch and tried to breathe deeply and calm myself down. It was cold as hell and I was barefooted but I didn't care, I just had to get out in the night air so I could breathe, even though I could breathe anyway. It's the weirdest thing. Almost impossible to explain to anyone who has never had one, which I had never had prior to the accident. Very strange.

Ooops. Just had a little tachycardia. I've been having little bouts of that for weeks and weeks now, after none for quite a while. Thank God they pass quickly.

I feel bad sometimes for just writing about my miseries. But, that is why I started this blog, as a kind of diary, not so much for readers, but more to keep my miseries out of my other blog where I have a little fun and rant about stuff. Still, though I'm very happy you're here. And you are the reason I try to keep up the links... for your research and edification, not so much my moaning and groanings.

Sunshine and Starbucks

2007-02-28T17:45:00.000-05:00

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. The pain had eased off by around 11a.m. and I managed to get a little bit done around the house. Very little, but still a little bit. With a lot of breaks.

By 2:30p.m. I was exhausted, of course, and very, very sleepy despite the massive jolt of caffeine from Starbucks. So, I napped from 2:30p.m. until 4:30p.m. and woke up feeling good.

Yeaaaaa!

I called the dog groomer to set appointments for my shih-tzu and Australian Shepard and got her recording. There was a locked door in my brain though, and I could not think of my phone number for the life of me. Now, this happens to everyone occasionally and has certainly happened to me zillions of times in the past but you always remember it within a few minutes, right? Lordy! Not me. Not with this brain fog. All I could remember were the first three digits. Finally, I started calling all of my relatives to ask them!! I couldn't get them and called the groomer again and this time, thank goodness, she answered.

I still don't know my phone number. I'll have to ask someone. Now, that, ladies and gentlemen, is brain fog.

Another bizarro day in the life

2007-02-27T22:37:00.000-05:00

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 Monday morning. So, of course, by last night my tummy was torn up and three new fever blisters popped up.

Oh. The fever blisters are new to the tummy upsets connected with the disease. In the past, I've gotten them anytime my stomach was upset because of the flu or whatever, but I hadn't had one for a year despite all the tummy upsets since. Then, when I went through the bad spell recently, I had five! It sucks. Of course, it could have been a virus.

It's pretty bad when you're so sick so often that you can't even notice when you catch a virus!

Anyway, I was feeling much better this afternoon. I took my mom to shop at Target and while there I got my $4.00 prescriptions filled. While I'm grateful for Wal-mart for starting the $4.00 prescription program, I still have a lot of problems with them, so I choose to go to Target who matches the program.

And, boy, am I glad. The professionalism and service at Target was superb, while all my experiences with the Wal-mart pharmacy have been nightmares. So, I got my prescription strength ranitidine, loratidine (Claritin), and doxepin. I haven't ever taken doxepin yet, and will start in the morning. Also had the Klonopin filled, which should help me get my circadian rhythmn back. Klonopin is great when you are anxious and really makes you go to sleep. When I get the least bit anxious, my symptoms go haywire. Not being able to sleep at night when I want causes anxiety. I've been taking Serex (oxazepam) which is what I keep on hand when I need an anti-anxiety med and still need to function. It doesn't make me sleepy, it just makes me calm and eases my mind. Unless I'm really upset, then it really calms me down. It adjusts itself somehow to the level of anxiety being experienced. It will let me go to sleep even if really anxious if I lay down then, and I always wake up without a "trank" hangover.

Anyway, then we went to a little diner which has really excellent southern cooking. I had country fried steak with gravy, potato's and onions, steamed cabbage, and fried green beans. It was soooo good. But, I guess there was a trigger in there somewhere.

Ten minutes after finishing, the bone pain started. For some reason, it always starts in my right arm, moves across the back, then starts down to my hips and legs. Then my stomach started rumbling with the first signs of diarhea. My mom gave me a Tramadol which she had and made me take it before it got too bad.

That was a good thing. By the time I got home, I still had to go to bed for a couple of hours and I still hurt some, but it was nothing like the last time about a week or 10 days ago when I waited until it was bad before I took a Darvocet. Both times, the bone pain had occurred on days when I had taken a Cymbalta (yes, I dole them out to myself every few days or so), so Cymbalta does help the myalgia but has no effect on the bone pain when it hits.

The bone pain is crushing.

Anyway, now, about 5 hours later, there is a general ache in the bones when I move, getting a little worse so I'll probably have to take another painkiller before bed, the diarrhea has passed for the most part and I'm left with only a bad queesiness.

Still, I am getting out in the morning and going to the library. My family is helping me get out and about more, and that helps. It really does.

It also really helps when I hear from my readers. Thank you all. It inspires me and keeps me going to know that I am helping others by sharing my days and helps them to not feel so alone. Yes, there are others like you and like me suffering from this strange, bizarro illness. It's something that is so very hard to understand unless you actually experience it, and it takes time and patience for loved ones to understand sometimes, not to mention the medical community. But, we can understand one another and we can all help one another through another day, every day.

So, please, let me hear from you. Post your comments or email me at livingwithmasto@aol.com.

Wow!

2007-02-27T22:13:00.000-05:00

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

2007-02-24T05:18:00.000-05:00

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, getting up in the late afternoon and by the time I'm well awake, the sun is setting. I simply cannot make myself do my household chores at night. I try, but end up doing little more than piddling around. Coming after a long spell of simply not being well enough to accomplish much, I end up with a very messy house, a ton of laundry, and badly in need of a dusting and vacuuming. The dust is a problem and starts to make me feel badly again, and I know that as soon as I do get the dusting and vacuuming done, it will stir up so badly that I'll end up being very sick again for at least 3 or 5 days, even though I take precautions like wearing a face mask and showering immediately afterwards.

It's a vicious cycle and it sucks. No one in my family is in a position where I would even consider asking for help. My mom is 82. My sis works full time and has a heart patient husband. My niece has two little boys, one 2 and one 4, and a career. It would be so much better if I did not live alone. I wish I'd managed to find a good man when I was in good shape as I can't imagine a guy wanting to take on such a pile of a ragheap at this point. Too bad that I'm neither of the inclination nor would it be legal to marry an actual maid!

Perking up

2007-02-15T02:11:00.000-05:00

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 Mastocytosis Society.

The Mastocytosis Society has accepted me as a member under their Angel program, for which I am very grateful. They seem to be a great group of people and I encourage everyone visiting this blog to go there first in their search for info.

Me. Lately,

2007-02-12T06:05:00.000-05:00

Itchy witchy

2007-02-07T03:17:00.000-05:00

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 nothing. Still, it was good to get out of the house. I simply have to and jump at the chance to go anywhere, although I invariably end up sick in some way from it. Not that I'm a gadabout. I don't dare go to the mall or anywhere I might encounter heavy doses of perfumes or dyes. About once or twice a month, I get out to a family dinner out, accompany someone on an errand. See a movie once in a blue moon. That's about it. I don't care. I'll go insane if I don't get out. Then we grabbed a bit to eat. I had fish. Perhaps I will have to eliminate all fish/seafood/shellfish. I dunno.

All I know is I've broken out in several new rashes. Just gave in and took an Atarax. From all the prescriptions I have, you'd think I take a pill every hour on the hour, but I very rarely take anything but ranitidine and Prilosec, and an anti-depressant. I'm very averse to taking medication, especially since it is what got me in this situation to start with. I go for spells without taking an H1 blocker and only do so when I must. I did get RX's for all that I should be taking, and some are the Wal-mart $4 prescriptions so I have no excuse for not getting and taking them. And I have renewed my intention of pursuing the PPA program Rx's. I don't know why I am having such a problem taking care of that. I think it seems like charity to me and I have always hated to ask for anything from anyone, but I've really got to get over that. And I will. I will. I swear.

Oh. One more thing. I've noticed recently that the ends of my nails are turning downward, drastically. This is weird. My nails have never done this before. I asked the doc if it meant anything and she couldn't think of anything. So, I looked it up on the internets. Supposedly it MAY denote heart, liver or respiratory problems. My heart was thoroughly checked out a year ago. I have asthma that kicks up periodically but that has never made my nails do this. That leaves liver. Maybe masto is impairing my liver functions. I don't know. I don't want to think about it. My best solution: Cut the damn nails off to the quick and toss 'em into the river of denial. Don't really have much of a choice otherwise.

Atlas Lifted

2007-02-04T00:15:00.000-05:00

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 early in the morning, and when I've awakened, I've been awake rather than in a stupor.

I did have quesiness and some stomach upset the first few days, but I was having it before being in the midst of a spell of gastronintestinal symptoms so I cannot say for sure that it contributed to it. It has faded now and I've only been having the regular stomachaches.

The myalgia is much better, but I have no idea if the Cymbalta has anything to do with it. It comes in spells and can last for weeks, then passes for the most part. I'd have to be on Cymbalta for several months before I'd really know. I have still had the pain, but mostly only when I've been out and about, going to the grocery store, running errands or visiting relatives. The ads for it on TV do say it's supposed to help pain associated with depression.

It's a serotonin and norepinephrine reuptake inhibitor. The Wellbutrin I've taken for years is a dopamine and norepinephrine reuptake inhibitor. I had the bone pain while on Wellbutrin, but not as badly as recently while I've been off and since it's been better with the Cymbalta, perhaps the norepinephrine may help.

My brain fog is a little better also. The brick wall in my head seems a little more mud brick rather than concrete block. I actually enjoyed watching Jeopardy tonight for the first time since I can remember. I used to love to watch it, trying to beat the contestants and doing quite well, but since I've been sick it's been an exercise in frustration. I might as well have been beating my head against the wall. I know I know the answers but couldn't answer for the life of me. Tonight, I actually came up with a few answers while the show was still on. Triumph!

Attention-Deficit/Hyperactivity Disorder
Norepinephrine, along with dopamine, has come to be recognized as playing a large role in attention and focus. For people with ADD/ADHD, psychostimulant medications such as Ritalin/Concerta (methylphenidate), Dexedrine (dextroamphetamine), and Adderall (a non-racemic mixture of amphetamine salts) are prescribed to help increase levels of norepinephrine and dopamine.

I've also found this link to be very helpful. I did not know that fibromyalgia also caused brain fog. The rhematologist said that I had strong indications of fibromyalgia but that it might be the symptoms of mastocytosis also. I know that I had severe pain in probably 85% of the places she touched. I was very surprised to feel pain in most of those places, since I had simply felt pain seemingly everywhere. In reading the personal stories of a few masto patients, I've seen that several had also been diagnosed with fibromyalgia. There must be a connection.

If I get a chance, I'll ask the doc on Tuesday, though she probably won't know. I had to reschedule from Thursday due to the snow storm we had.

UPDATE: Cymbalta is commonly prescribed for fibromyalgia with depression. See here.

Visitation

2007-01-31T11:02:00.000-05:00

I'm glad to see that so many people are finding this site in their search for info on mastocytosis and/or related symptoms. There were 30 visits yesterday alone.

In addtion to the U.S., the site has been visited by people in:

Delhi, India
Berlin, Germany
London, Leicester, and other folks in England
San Juan, Puerto Rico
?, Colombia
Ontario, Canada
Dublin, Ireland
?, Saudi Arabia

230 visitors have found this site in January alone. I hope some found the answers they were seeking.

Digging out from under

2007-01-29T23:45:00.000-05:00

Gastrointestinal symptoms started slamming me shortly after my last entry, then massive, bone-crushing fatigue jumped on-board and I have done little but toddle from bed to toilet to couch to toilet and round and round again since. By Friday, I began to realize that I was seized in the grip of profound depression and just wanted to crawl into a hole in the center of my bed and burrow down to hell. I immediately took my one last remaining Wellbutrin I had been saving for such an occurrence, just in case.

Luckily, I wasn't too far gone to reach out to my mother and sister. Just that simple act of reaching out and getting that support system set up can save a person's life in the grip of depression. As incredibly hard as it may seem, anyone battling depression MUST do this one thing - reach out to someone, somewhere - a relative, a friend, a clinic, a social service, a help line - anything. You CAN do it, and you MUST. I know. I have battled clinical depression for decades, but I had it so well controlled as to be non-existent with medication and after years of psycho-analysis and therapy. The level of it at it's worst never approached the sheer pernicious persistence and massiveness it has displayed in the year or so as my masto symptoms have intensified, and thinking that I could get by without my medication for it has been a major mistake.

My sis is being a rock. Unfortunately, my mom had a minor car accident Sunday and is distraught, which has added to my situation, but I have managed to pull up a little support for her and I expect she'll be back to herself tomorrow. They have helped me realize that there is simply NOTHING more important than taking medication for my depression.

I had a whole bottle of Cymbalta, which my doctors had wanted me to try in addition to the Wellbutrin and Ritalin last year. I had tried it and it made me nauseous, nervous, jumpy and shaky. Since I've been off the Wellbutrin and have been hoarding the last half dozen Ritalin, I thought I'd give it a try and see if it gets me to Thursday, when I see my doctor.

I made it through today and the side effects were nothing like what I'd experienced before in combination with the other drugs. Yes, my stomach has been upset and I've had diarhea, but I was having that before, so I can't say it worsened it for sure. Since it is a serotonin reuptake inhibitor, I'm thinking it may give me an indication as to whether the doxepin might be enough to keep my head above water. I'll still get and RX for generic Wellbutrin. I've found a Canadian pharmacy where I can get a months worth for about $40. Wellbutrin is a drug to maintain dopamine levels and since it works so well for me, as does Ritalin, which also affects dopamine levels, it's been pretty well established that keeping that brain chemical stablized helps me.

Now, however, with my brain obviously awash with God knows what chemicals causing this mental dysfunction, who knows what all will help. (Gastrocrom will, dammit, for $680 a month!)

Just to note, while I was taking Wellbutrin and Ritalin on a regular basis, the brain fog was not abated. Of course, it's all worse not taking anything, but the brain fog persists despite any depression symptom alleviation.

"Brain fog" is like cement clogging your thinking processes and ability to understand and remember just what the heck is going on at any given time. With me, its not like I wouldn't know what to do it the house started burning down or a child started choking or something like that.

Lemme see if I can give some real life examples. As I've explained before, the right words don't come easily. Similar words to the words I am trying to write or speak come out instead. I've always been a superb speller, but now I cannot spell very familiar words and when I look up a word, I can't remember how to spell it one second after looking it up. If I have to go to the store for more than two things, I have to make a list and then try very hard to remember to bring the list and remember that I have the list once I get there. When I am driving to a particular place to do a particular thing, more often than not I will drive right past the place, even if I have someone with me and we are actually discussing the place I am driving to. There's been lots of burnt toast, food forgotten in the microwave, and sitting down to a meal is a chore since I have to get up to get a fork, then a napkin, then the salt, then a drink, etc. etc. Filling out a form, or trying to compile my bills or figure out expenses is an insurmountable mountain. It's pretty ridiculous.

Also, sometimes I will get incredibly angry over the tiniest thing and not know why. They are usually very short bursts, and I am able to realize that I have to apologize immediately, but they are upsetting and I try to take something to calm me down so that my system doesn't go haywire. If I don't, then the itching comes or intensifies and more than likely I will be off and running to the bathroom before I know it.

Okay, like right now. Itching like crazy and bout time to run. See ya later.

Here is your answer...

2007-01-24T03:12:00.000-05:00

I noted that one of my visitors found my site while searching for the answer to the question: Can you die from mastocytosis?

Via Wikipedia.

Hubertus Czernin (more fully, Hubertus Alexander Felix Franz Maria Czernin von und zu Chudenitz) (17 January 1956 - 10 June 2006) was an Austrian investigative journalist.

He died in Vienna of mastocytosis.

UPDATE: I actually came upon the news report of the above which was apparently the source document, on some Jewish news mag or such, but didn't think to ref it.

A few notes

2007-01-23T01:39:00.000-05:00

Haven't been posting because I've been wracked with the bone pain/myalgia the last few days. It's been rainy and very cold which seems to make it worse. And I've just been bummed out because the disability insurance company has led me to believe that I may lose my disability because I haven't been going to the doctor regularly since I've lost my insurance. When they asked me had I seen the doc, I said no because I couldn't afford it, which is true, but I did have an appointment in November which the doc's office had rescheduled for December because of an emergency, then they had cancelled that because she was out and I can't remember if they had rescheduled it, I don't think they did. But, during the phone call, I didn't remember all of that. My brain does not freakin' function! So, I called them back to tell them and meantime that I had an appointment for the 1st, at which time the doc will fill out the forms they need. Hopefully, I won't lose it, because I sure as hell cannot work.

I was a business analyst. Now, I can barely spell the words. I couldn't waitress or even fix fast food because I can't remember what the hell the orders would be, I imagine.

Sometimes, just posting upsets me which brings on worsening of my symptoms. I'm even trying to avoid the news, even though I've always been a news and political junkie, because my system just cannot withstand it. I'm going to have to find more soothing hobbies.

Tonight, I've avoided the State of the Union for just such a reason. I flipped over once just to hear about the millions and billions we are spending to help other countries. That's great, really. Yet, we cannot manage universal health care for our own sick. Tax credits for health care. Oh, whoopee. If you don't have the $300 to $600 a month to pay for health insurance, what good does a tax credit do? It benefits those who can afford it to begin with, of course. Amazing. Plus, I don't pay taxes on disability income. Ridiculous.

Whatever. I won't be posting much until I have finished all the paperwork and such that I am trying to get done for Social Security, even though I have little hope of it considering that I cannot afford the tests I'll probably need. My depression is so severe though, it's possible that I will get in for that alone. I cannot describe how depressed I've become since I've been ill with this disease. I've battled it for years, but I was winning. Masto has put me over the edge. Especially since I cannot afford the medication.

I have more links to add. I'm gratified to see that a number of people are finding this blog and hopefully benefiting from the links every day. No one is leaving coments. Please comment. I'd like to hear from you. I'd like to know if it's being useful.

I'll probably get up some ads that might generate a few pennies if any of my visitors would be nice enough to click on them, and a PayPal donation link soon, in case anyone might want to contribute a few dollars for finding a wealth of info on mastocytosis all in one location. Trust me, the links are found from hours spent searching, so they will save you having to go through all that I have to find this information. Still, they are freely given, so I hope they help.

Out of it all

2007-01-18T06:35:00.000-05:00

Cold is gone. Added a lot of links. Spent yesterday in excruciating pain for the most part, and the day before mostly tranked out from an upsetting time on the phone with disability insurer. Will probably end up homeless and dead on the street from not having insurance and hence the money to see the doc and have the tests and whatthehecknot. Feeling hopeless and can't post more for risk of getting sick from getting upset and stressed, being now out of tranks.

Akins Book

2007-01-17T07:15:00.000-05:00

Description of Cem Akins book, Mast Cells and Mastocytosis, An Issue of Immunology and Allergy Clinics, on Elsevier:

Mast cell activation is a central event in development of allergic disorders and contribute to pathogenesis of many other inflammatory and neoplastic conditions. Improved understanding of normal and pathologic mechanisms regulating mast cell differentiation, survival and activation may therefore lead to development of new therapies for these disorders. A number of important breakthroughs have recently been realized in our understanding of mastocytosis, a disorder characterized by pathologic mast cell growth and activation. Significant advances were made in such key areas as uncovering genetic basis of disease, establishment of objective diagnostic criteria, and emergence of novel treatment concepts based on its molecular pathogenesis. This issue of the Clinics brings together many of the experts who made these breakthroughs in mast cell biology and mastocytosis possible.

Daily Diary - Yesterday

2007-01-15T01:26:00.000-05:00

Very painful day. Too much pain to do anything, including typing.

Update: Can't sleep. Back on the Phenavent to breathe as I woke up nearly suffocating after trying to get through the night on the Coricidan. I think the damn cold is in its final throes though.

This site had 17 visitors yesterday. Amazing. I guess I'd better be more careful about what I write. I have a smart mouth.

I've found a lot more links, actually from following links to searches that brought folks to this site. So, thanks. I'll get them posted when I feel up to it.

As I've said before, I need a keeper. This morning, I totally phased out on taking my morning dose of ranitidine and Prilosec. It was the first time if forever that I hadn't taken either. I haven't had any terrible bouts of the diarrhea in a while now, so I guess I got a little lackadaisical. Well, actually, between the cement in my sinus cavities and the cement in my actual brain, I just didn't think of it. I was too busy trying to get myself able to breathe.

I ate some oatmeal and a little bacon for breakfast and a few hours later, it was time for a nap. I was exhausted from doing nothing again, as is usual every few hours. I slept awhile and then awoke with what hasn't happened to me in quite some time. A bout of the sudden throw-ups.

Let me explain what this is. This isn't nausea. Nausea usually comes on in waves during bad bouts, usually when I'm also having diarrhea. This isn't acid reflux. I'll have no indigestion or any other feeling like it, no heartburn, nuttin'. This is where my body suddenly decides it wants to reject anything in my stomach, violently and without warning. It either makes it all the way out, or if I can, I am able to keep it from getting up in my esophagus at all by tensing my diaphragm when I feel my stomach start to constrict. Apparently, that is, since this is the first time I've ever been able to do that, perhaps because I was in a relaxed state already and because I had nothing much on my stomach.

Anyway, I laid very still and I was able to avoid throwing up. Then, about 15 minutes later, I started burping. Not once. Not twice or three times. About 15 times. About once every 2 minutes. No kidding.

When I got up, and dived for my meds, I could barely move. The myalgia was terrible and has stayed terrible all day but seems to be letting up a bit now. As soon as this cold is gone, I'm going to start to take walks at minimum, even though this pain is nothing like the achy-ness I used to get when I slept too much or laid about too much before. It's entirely different. And, my rashes will definitely flare up like crazy as they do from the slightest exertion or heat. It'll be choosing my poisons, but maybe the release of endorphins will help the myalgia. If something is going to exacerbated one way or the other, at least walking will get me out of the house. Ahhh, for the days (even the days directly preceeding my accident) when I had the body and the money to work out 3 times a week with a trainer in the gym. Good golly, I was in such good shape. Now I'm a sick blob.

I think I'm going to try taking baby aspirin because in my latest searching I have seen that aspirin supposedly causes slow leaks of the chems keeping the body from high peaks and lows. I dunno. Just something else that might help that I can actually afford. And since I've had terrible gas all day, no more forgetting the H2 blocker and proton-pump inhibitors for me.

Daily Diary - Yesterday

2007-01-14T03:07:00.000-05:00

Felt better with no myalgia and only two bouts of extreme fatigue that passed, and just had the general fatigue as usual. After two doses of the Phenavent, I went back to the Coricidan since it seems to be able to keep me cleared up once I am, just not clear me up once I'm stopped up. Hopefully, the cold is clearing out some.

Managed to get a bit done in the kitchen, washed a load in the dishwasher.

Have been laying off on the Nasalcrom, thinking it probably wasn't helping much, but I think it may be as I have had a few bouts of stomach cramping while not using it. So, maybe even a little cromolyn in the system helps some. Doesn't hurt.

Daily Diary - Darwinistic

2007-01-13T00:06:00.000-05:00

And late.

This crud keeps getting worse. Skipped a dose of Phenavent (brand name: Entex) and by this afternoon, head felt like it weighed a thousand pounds. Tried Coricidan. Hah.

I understand some idiotic kids (these days, yes, I'm getting old as hell) are using it to get high and hallucinogenic. (Dude! This med will freakin' kill you if you do. Try another... geez, whatever happened to hooking up with a friendly neighborhood dealer and taking real drugs? I mean, if you're going to do it, do it right slacker! Support third world countries, not pharmaceutical giants, heh.)

Anyways, it sure ain't effective against this crud. Went back to the Phenavent and breathing easier now. Maybe I'll find something better tomorrow. So hard to find a good OTC decongestant these days since so many have changed their formula because of stupid, slack-ass kids so rebellious and brave enough to endanger their lives with cooked up meth (from Sudafed) and DMX, but not so brave and rebellious enough to chance good, choice street drugs which might get them busted and released into juvy but won't, in all likelihood, kill their stupid asses. That, my friend, is not in the interests of your friendly neighborhood capitalistic drug dealer. Cuts into their profits to kill their customers.

Whatever. It's Darwinism at work.

What a segue. Mastocytosis, when you come down to it, is Darwinism at work too, only in the opposite reaction with the same potential results. Our bodies immune system, designed to keep us alive at all costs, is in maximum overdrive, basically killing us in an attempt to keep us alive. What a joke.

Life is truly absurd. What could be better proof of evolution if not this? For any intelligent designer would surely not have designed this.

Anyways. The myalgia is extreme today, but not as extreme as it was last night. I can walk and move okay, but it's killing me just to sit here. Yep, you got it. Today, the myalgia is worst at rest while yesterday it was worse at movement. You go figure. My head's too full of crud.

Opening Eyes

2007-01-12T16:43:00.000-05:00

Since I finally have up some really useful links, I've decided to open up the blog to the world by joining Blogging Chicks, and, later, TTLB. This will elevate teh blog's Technorati rating and bring it up much higher in the Google search returns, once I've registered it there, too. Maybe my research will help someone out there doing research on their own.

Daily Diary

2007-01-12T00:21:00.000-05:00

I'm going to start forcing myself to make a Daily Diary entry every day, no matter how terrible I feel. It may be helpful for when I do, finally and eventually, file for Social Security benefits. Which I swore I would two within two weeks of January 1st, so I better do it this weekend, huh? Of course, I would get a virus. I suppose I have a virus anyway. It's really incredibly hard to tell the difference between regular bad masto days and even a heavy cold.

The entries may be short, terse, and boring, but it is for me and not any readers who may stroll by. There will be two parts: 1) how I felt, and 2) what I accomplished. I've sworn to accomplish something, no matter how minor, each and every day. I may include a third, what meds I take, depending on what time I post, and the previous days meds might be more applicable, I don't know yet.

1) Today, the bone pain, myalgia, or arthritis or whatever you want to call it has been very, very bad. It's difficult to walk. I can gently squeeze a finger and it hurts badly. 10 minutes later, I can squeeze and it feels fine. 10 minutes later, I can squeeze and cry out in pain. It's freaking ridiculous. Joints ache. Bones in joints ache. Shoulders, legs, back, everything aches at one moment or another or all at the same time.

The fatigue is terrible. I had a hard time going to sleep last night and didn't get to bed for real until about 9am, but I still slept my usual 6 hours, not getting up until around 3pm. Still, I've had to go lay down in the bed twice for 30-45 minutes lest I fall out of my chair and down to the floor.

The Phenavent really interferes with my sleep. I've got to try to get some OTC cold medicine tomorrow and see if that helps better. The Phenavent just really helps me breathe from my nose and my lungs are more relaxed and I can take a little deeper shallow breaths and don't cough so much. It also holds off the asthma I'm especially prone to when having a cold.

The rashes behind my knees have flared up badly so I applied Vanos. No sooner had I, than the rashes on my abdomen flared up. I'll hold off a day or two before applying the corticosteroid, as its for small areas only.

2) I took out the trash today. Emptied the bins, picked up the trash around the house, put it out in the trash can and rolled it to the curb. Had to take two breaks because I got so hot and so breathless. Then, I got so cold. I'm constantly changing the temp in the house. I get hot at 67 degrees and freezing cold at 73 degrees. It's sick.

I dressed long enough to go get a salad and a burger for dinner. Rather, for lunch and dinner. Just ate the burger, then later the salad. Mostly. Appetite not great. Then back into the gown and robe. Life is grand. (I'm being sarcastic.)

No, I hate that feeling sorry for myself bullshit. I'm alive. I have loved ones, even if I have no immediate family, I have my mother and sister and brother in law and nieces and nephews. I have my pets, my house, my neighbors, and a community I could participate in, an income, a lot of medicines that are affordable, too many belongings, a car.

I still have a few friends though some have seemed to dropped me inexplicably. I've done nothing to them, nor have I talked about my problems or health or done anything I know of that should drive them away. But, that's okay. I think in at least one case it's a matter of passive aggressiveness that's been shown many times before, especially when one doesn't kowtow to her overbearing bossiness and brow beating.

Ok, don't know where that came from, but there it is. So what.

The Mind Meltdown

2007-01-10T20:30:00.000-05:00

I found this via Wikipedia entry for mastocytosis.

To me, this is the most devastating, foul, annoying, and soul destroying symptom of masto that I suffer from. And I suffer from it greatly. Having been a professional analyst with a very high IQ (no brag, just fact... never did me that much good!), and now being unable to spell some of the simpliest words or barely write a coherent sentence, it just kills me.

The one month I had on Gastrocrom, I experienced a great alleviation of this symptom. What right do they have to charge $680 for one months dosage of this medication!!!!?????

I asked my pharmacist, and he told me that you can buy a pound of cromolyn sodium for about $150!!! The raw powder. He recommends I check with a formulating pharmacy to see if I can get it encapsulated locally, as it used to be available.

UPDATE: I've found out in my recent research that 200 milligrams of Gastrocrom four times daily is NOT comparable to the 5 milligrams of cromolyn sodium in Nasalcrom. I had misunderstood the 5 millimeters of the oral solution in the vials for milligrams. Still, Nasalcrom does seem to help the rhinitis, so I will continue to use it. I guess that explains why it doesn't help the stomach and cognitive problems so much.

1: Psychosom Med. 1986 Jul-Aug;48(6):437-47.
Related Articles, Links
Mixed organic brain syndrome as a manifestation of systemic mastocytosis.
Rogers MP, Bloomingdale K, Murawski BJ, Soter NA, Reich P, Austen KF.

Systemic mastocytosis is a disease characterized by an excessive accumulation of mast cells, and associated with skin lesions, flushing, diarrhea, tachycardia, and psychiatric manifestations. In order to define more clearly the psychiatric manifestations, ten patients with this disorder underwent unstructured psychiatric interviews and a battery of psychologic testing. Both revealed a pattern of cognitive and affective changes in the majority of these patients, best categorized as an atypical or mixed organic brain syndrome. The cognitive changes consisted of diminished attention and memory, and the affective changes of anger, irritability, and, to a lesser extent, depression. These manifestations fluctuated with the level of disease activity, and appeared in some cases to respond to histamine antagonists and disodium cromoglycate, medications used to control the excessive mast cell activity. It is important for psychiatrists to be aware that mental status changes can represent psychiatric manifestations of mastocytosis, a readily treatable medical disorder.PMID: 3749421 [PubMed - indexed for MEDLINE]

Extra Crud

2007-01-10T19:52:00.000-05:00

A little over a week ago, at my little nephew's 4th birthday party, I unthinkingly sat across from one of my dearly loved nieces who had bronchitis. As I've mentioned before, I've had over half a dozen intensive rounds of Prednisone which weakens the immune system, so later, my mom pointed out that that had probably been a very bad idea for me and that she had tried to get me to sit somewhere else. Me, being a virtual mental incompetent with this disease, did not get the hint.

So, once I got to my mom's place, I thought it would be a great idea to gargle with Listerine, which I hadn't used in years. (I do occasionally use Scope.)

Badder idea.

I quickly swished a bit in my mouth and spit it out, and took a bit more in my mouth. In those 2 seconds, maybe, it was enough to cause my throat to slam shut and my head and chest to be filled with mucus. I had to spew it out of my mouth and ran to my purse, unable to speak or breathe, gesturing wildly to mom.

I was able to get some of my Albuterol inhaler in me enough to open my throat enough to swallow a couple of Benadryl between severe bouts of coughing. Eventually, I was able to get down a hydroxyzine (H1 inhibitor), a couple of ranitidine (H2 inhibitor), and a Phenavent (a molecular equivalent of epinephrine and ephedrine).

I had no Epi-pen as I haven't yet been able to swing the $90 bucks for it, having no insurance.

After gagging and coughing and gasping and near vomiting for about 10 minutes, I coughed up/vomited up an entire handful of mucus.

AN ENTIRE HANDFUL!! I swear, it was about 3/4 of a cup! It was the most revolting experience in my life, that I can recall.

I don't know if this was anaphalaxis or not, but I seriously thought I was going to die for about 10 or 15 minutes.

Gradually, my system calmed down, but for several days I was a good bit sicker than usual, especially wracked by the physical pain and exhaustion.

Now, I am apparently suffering from a cold on top of the general misery I live with daily. About two days ago, my head became stopped up non-stop, despite my usual use of the nasal spray which is the only remedy that allows me to breathe between blowing my nose, which is a constant. My doctor says to just keep using it since it's the only thing that helps. I mean, when you're shoveling in antihistamines like Allegra, and hydroxyzine, (and whatever else is available sometimes) and your nose still won't quit running and you still can't inhale through your nose, you do whatever works.

So, last night I started back on the Phenavent regularly which I've been hoarding for use during my worst times. It's helping with the congestion which is now filling my chest, also. The sneezing, coughing, watery eyes, and back and chest pain I'm just living through. The usual myalgia is kicking up a little more strangely than usual. The Relafen is helping, then not, then is. What the hell.

It's a little hard to tell where the virus picks up and the masto leaves off.

All Advisors Appreciated

2006-12-14T06:12:00.000-05:00

I've done nothing to promote this blog, really, as it's just been a place to put my "stuff" and feelings, so I was surprised to recently find out that someone had noticed it. I've been exchanging emails with another masto victim, which seems like the proper word, rather than patient. Some of the following is taken from some of that correspondence, but I thought I'd put out a call for anyone who can contribute general information or information about resources to please contact me.

I live alone, so no one really sees me when I'm sickest as I'm home alone in bed. It took awhile for my family to come to understand that I was actually sick. Now they do, but I hate to talk to them much about it as I don't want them to have a perception that talking to me means talking about sickness. Who wants to do that? I wouldn't and I don't want them to come to avoid me. Hence, this blog, to help me get things off my chest without bothering anyone. It, and a kind of political blog I also do, plus writing in general (and rewriting, as all of it now comes out a mess and I have to mold it into something readable with real and proper words... for example, I will often type the preceding more like "mole it into someone readable with reel and proofer works", no kidding, I don't know why), are my efforts to keep my brain functioning, too. I used to read the classics, now I have to reread paragraphs in magazines repeatedly.

I'm sure now that I'm in another bad phase as I doled out one of my last few Wellbutrin and two Ritalin's plus as much caffeine as I could stand yesterday to try to get some things done around the house. I achieved about 1/4 of what I used to be able to do working normally with little urgency and I was going as all out as much as I possibly could. I still ended up having to lay down twice. From 10am to 10pm, I managed to take a shower, gather some various spread out messes into sorted piles of messes, wash and dry one load of clothes, strip the bed, wash and dry the linens, remake the bed, throw out a bunch of trash, including most, not all, of moldy messes in the fridge. That was it. It's hard not to be disappointed in myself, but I know I did all I could manage. Much better than most days.

For that, today I spent mostly in bed, racked by the fatigue, myalgia, diarrhea, stomach cramps and quesiness, and my rashes have gone into overdrive, even though I've been taking hydroxyzine, an H1 blocker and Prevacid.

It's my third day since I've run out of ranitidine, my H2 blocker. I have to take 300 mg a day, plus Prevacid when I can get it or Prilosec OTC. I stay broke trying to live on disability, but I'll have to scramble around and try to get some more ranitidine tomorrow. It's pretty cheap OTC so that tells you how broke I am. Still, my system has gone haywire without it.

When I say haywire, what I mean is that I pretty much feel like I have to burp or poot all of the time. Constantly. Only, if I poot I'm just as likely to poop badly so I'm always running to the potty. And, if I burp, I'm just as likely to barf. Yet, I have no heartburn or indigestion. Probably because I have no desire to eat anything. If I try, I just manage to choke down a little. This is new, this time. No appetite. None. No hunger, either. Totally new for me.

My mental capacity has diminished so terribly, I can't imagine working or studying anything, even without the physical symptoms. The few weeks I had on Gastrocrom alleviated the brain fog greatly, but without it, and not to use the word in a derogatory way but rather descriptive, I get more and more retarded every day. So far, I've only had about two months, April and November, when I have felt somewhat better, except for the last 10 days or so I was taking the Gastrocrom. It was like a miracle, clearing up my rashes to a large degree, clearing the brain fog, and really helping the gastrointestinal. It even helped the fatigue some little bit, though I noted nothing different with the myalgia.

I've only had two Singulairs in the last two weeks. I have two left. I save them for severe attacks.

Any advice anyone can give me would be greatly appreciated, about meds or anything, especially about anyone's experience with the PPA program or what help the Mastocytosis Society might have been to them. I would be especially interested in hearing other peoples stories, and how you were diagnosed, and whether you think my doctor's clinical diagnosis will hold up or not as I will have to pursue social security disability. My disability insurance company has provided me with attorneys but I haven't been able to get the paperwork done yet. I have to do that paperwork and the paperwork for PPA, but it's hard to do complicated paperwork when first you have to peel yourself up off the floor.

Any tips you might have as to how I can deal with the health insurance company who has denied my medical coverage extension by claiming that there is no evidence I cannot work as a business analyst, despite my doctor's assurances, would also be helpful. I can appeal their determination to deny extension of my medical coverage.

I was only diagnosed a month before my insurance expired and I was terminated, and only then due to my own research. My doctors were stumped and just kept giving me round after round (6 or 7) of prednisone and then not understanding when I would just come out even sicker.

Needless to say, I haven't had a bone marrow test nor have any of the doctors I've seen had any idea how to test me, nor know who could, nor could I afford it if they did. I have to admit some anger at the doctors who were treating me originally as I don't think this would have developed if they had responded to my numerous complaints about the reactions I was obviously having to the Levaquin and the anti-biotic ointments, instead of telling me it was normal. According to my research and the doctors, adult onset of mastocytosis is triggered by an allergic reaction. An internist and an allergist have both clinically diagnosed me with systemic mastocytosis, probably centralized in my gastrointestinal system. Tellingly, the broad spectrum anti-biotic Levaquin I was on for my injury and which the pulmonologist determined I was having an allergic reaction to, was originally developed to treat gastrointestinal infections.

I would like to open up this blog to posts by other masto victims, if anyone would like to make contributions. You can post a little or a lot, once or as many times as you might like. Just email me and let me know and I can set you up to post as you'd like.

Otherwise, any medical, experiential, or even legal advice or expertise you may have for me would be greatly appreciated.

Medication

2006-12-12T02:24:00.000-05:00

Two of the best medications for mastocytosis are on the Wal-mart $4 list. Doxepin and Hydroxyzine. Here is the link. I haven't been on Doxepin yet, but I plan to get an RX from the doctor if she will, because I've only just learned that it is a good medication for mastocytosis because of its inhibition action of H1 and H2 blockers. Hydroxyzine keeps me sane from suppressing the itching and the anxiety that it causes. I have to find out it Wal-mart has only the syrup or what. It's not clear on the list.

As for Wellbutrin, the best price I've found is here. The dopamine reuptake inhibition of Doxepin is minimal, so I will still need the Wellbutrin for that, probably. The doctor had wanted me to add Zoloft because it won't cause me to gain weight. Doxepin might. So I'm not sure what she'll say.

Since I also have ADHD, I take Ritalin, but an affordable alternative is dextroamphetimine (Dexedrine), so I'm hoping to maybe take that which should counteract the weight gain, maybe.

It's ridiculous having to do all this research myself, but my doctor is no expert on mastocytosis. Of course, all masto patients experience this since there are only a handful of experts spread around the world and even they are treading on unknown territory most of the time. OK, actually, I'm just procrastinating, which is easy to do when you feel like shit anyway.

I still have to do the paperwork for PPA. I think I just wanted to do some research first so I know if I'll be better off switching or staying with whatever I can get on the PPA program.

Singulair is my main concern. I have found no affordable sources nor any alternatives whatsoever. As you can see here, the patent is extended until 2012! Merck gets 20 years of patent protection on this medication. 20 years! However, I do think they participate in PPA, so I'll update on this.

Symptom List

2006-12-08T09:04:00.000-05:00

As I've said before, November was a fairly good month, all in all. Mid-October, I was well into a long masto phase that had picked up in May. April had been fairly decent, but every month prior back to the date of the accident, the triggering event, had been hell.

Now, I'm obviously going into another phase. I don't really know what to expect. So, it seems like a good time to post my symptoms as they were as of October 12th, which I had prepared for my doctor in case she needed it for the clinical diagnosis. Apparently, she felt she had enough info. Now, if only the insurance company would agree that her clinical diagnosis, prognosis, and disability determination were enough.

I've got to bite the bullet and call the insurance company and ask just what it is that they think they need. I've got to make myself do that on Monday. I have no idea why they think they can second guess my doctor. They aren't challenging the diagnosis, just the disability from what I read in the letter. How can they think I could hold down a job is beyond me.

I digress and ramble. Here is the symptom list.

CONSTANT

1) Runny nose
2) Stuffy sinuses
3) Inability to concentrate, focus, failing memory
4) Extreme indigestion
5) Extreme excess gas (not to worry, controlled with meds!)
6) Coughing, ranging from mild to unable to talk normally
7) Itching (both rashes and other places)
8) Rashes
Inner wrists (small pale bumps)
Inner elbows (redness, or plaque-like patch)
Back of knees (red-brown patches)
Around clavicle (red bumps)
Sternum (red plaque-like patch)
Around navel (red bumps to plaque-like patch)
Abdomen, above ovaries (red to brown plaque-like patches)
Down sides of back (red bumps to plaque-like patch)
Center of lower back (large red brown patch and red bumps)
Both sides of neck (red bumps to plaque-like patch)
(Note: Vanos ointment, a very powerful corticosteroid ointment, will clear these symptoms, but can only be used on a small area at a time, so by attentive rotation, they can be kept under some control at varying times in varying degrees.)
9) Extremely susceptible to bug bites as never before, with mild to severe sickness for hours to days afterward
10) Daily “sick” headaches lasting for hours to all day
11) Extreme pain from bone spurs in injured foot and ankles
12) Urinary urgency (steadily increasing from normal in last few months) (Note: this may have been a side effect of Gastrocrom? Haven't noticed it continuing at this point.)
13) Substantial fatigue

VERY FREQUENTLY (4 TO 5 DAYS OUT OF 7)
13) Diarrhea
14) Painful stomach aches
15) Extreme fatigue
16) Mild flushing -
Feeling very hot or very cold without relation to temperature/activity
Feeling very hot with even mild activity or mild warmth

FREQUENTLY (3 TO 4 DAYS OUT OF 7)
17) Nausea
18) Painful body aches, bones and joints
19) Bouts of unreasonable irritability, flashes of temper

OCCASIONALLY (1 TO 3 TIMES A MONTH)
20) Sudden onset of vomiting with no warning and little nausea
21) Severe flushing, lasting for a few minutes to an hour or more, usually when mildly stressed (doctor offices, social gatherings, remembering accident, etc.)

Bizarro Allergies

2006-12-08T08:28:00.000-05:00

When I am in a masto phase like I am now, it's downright stupifying what I'll have an allergy attack for. Just now, I was feeling fairly ok, and I went and brushed my teeth with the almost used up toothpaste I've been using for weeks now I guess. I immediately got completely congested and slammed with body aches and bone pain. Coughing now.

I've noticed a reaction to hairspray I've used for years, a drink of orange soda, almost anything, for gosh sakes. It's ridiculous.

This time, I'm having a hell of a time sleeping. The fatigue and constant itching is wearing on me. All I can do is try to keep myself occupied to keep my mind off of the itching, but by not doing anything physical because I not only have zero energy, but even minimal activity causes the chemical cascade to begin and my world falls apart.

I had no choice but to get outside the other day and mow the smallish front yard. I know, I know, it could have killed me, but it had to be done and I had no money to pay anyone. I was very careful and dressed fully covered, kept my medical mask on, drank tons of water, and pumped myself full of H1 and H2 blocker and Singulair and Prevacid. I had to take a break about every twenty feet, so it took me 4 hours. Thankfully, a neighbor came and took over, so I managed to survive. God, the pain afterwards was almost unbearable, but I still have a few Darvocets and I can afford to get them refilled. I wasn't able to sleep, both from the pain and the congestion and the labored breathing and coughing. It took about 48 hours to get back to awful.

The house is a holy mess now though, and that stresses me. Family matters is a stressor right now. No matter how I try to tell people that I cannot be exposed to stress, it doesn't seem to register. I understand that I don't look all that ill or disabled, except when I'm in respiratory distress, so it's easy to dismiss it or forget it. But, a good hard look will tell anyone that I'm not well, too. And, when I feel like this, I even slack on what little medicine I have left and so I just feel worse.

Oh, pshaw. It's not their fault.

I need a freakin' keeper.

Chills

2006-12-08T05:37:00.000-05:00

Haven't been able to find any reference about the weirdness I described in my last post, but I did find the following. I have experienced this also, I can't even say how many times. It's funny how once something like this happens a few times, you start to not notice it when it does. Especially when you're functioning on about half brain capacity than previously. Hopefully, keeping this blog will help me keep a handle on things.

Question: Every time I have had an attack, I have terrible shaking, as if terribly chilled, although I may or may not feel chilled at the time. I totally cannot control it no matter how hard I try to stop shaking. What is the cause of this?
Moderator: And actually that question several people asked. We have combined it.
Dr. Theoharides: I don’t know the answer but I am confused by the question. Chills are one thing, shaking is another. Are we asking chills, meaning someone feeling cold or trembling because they feel cold? Or shaking because….
Moderator: They look like they are having chills but they are not, they actually are not feeling cold, they are just shaking. Is there anybody here that asked that question that could clarify it?
Audience member: I have that.
Audience member: I have that too.
Audience member: I have that.
Laughter in the group.
Moderator: Do you actually feel cold?
Audience member: What it is, is that if someone is actually looking at you, they would think that you are cold, but you are not really cold.
Audience member: Have you taken your blood pressure when this happens?
Audience member: Yes, and it drops.
Dr. Castells: We don’t really know what it is due to but that question is very important. If the blood pressure is going down, then there is poor perfusion to the muscles, in the legs, in the extremities, in some parts of the body so the body is actually trying to help that the blood vessels can continue to provide circulation to those muscles and that might induce some twitching of the muscles so the blood pressure and the release of histamines and the other mediators to the blood stream can actually induce those rigors.. Truly we don’t have any animal data to support which of the mediators or which one it would be. I have encountered the phenomenon in a lot of my patients with mast cell activation syndrome, where they start to shake but shortly after they recover from the profound attack of hypotension. And this is the only explanation, why the blood pressure is recovering. The muscles are trying to get the blood flow continued.
Dr. Butterfield: I just want to use this as an opportunity to suggest having a mediator kit for these times. Doing a sample, that is only way we find out. You have to do the basic stuff here. Basic information.

Arrhythmia and weirdness

2006-12-05T00:45:00.000-05:00

Had a bout of heart arrhythmia today. I've been having the chest pains for several days, Thursday evening was the first time, this go-round.

The fatigue is still overwhelming. I cannot be awake longer than 4 to 5 hours without having to lay down and sleep for awhile. Yesterday, I took one of my last few precious Wellbutrin and Ritalin, plus drank a 1/4 liter of Pepsi and half of a venti Starbucks and only managed to stay up about 5 1/2 hours before I had to sleep for 4 hours. I have no real sleep cycle. I sleep when I have to because I cannot stay awake a minute longer. Today, I got up about 9:30am, couldn't stay awake, went back to sleep until 12:30pm, napped from 4pm to 6;30pm, up until 8:45pm and slept until 12:30am. That's after a whole venti Starbucks. It's bizarre.

As of yesterday, the myalgia and stomach upset had gotten considerably better. So, that's something.

One note, during the few weeks I'd had while feeling somewhat normal, I had another bizarre experience twice, both lasting only seconds, the first one longer than the second.

I cannot describe it other than by calling it internal chills. I was not cold. I was warm. I felt nothing on my skin or muscles. My body didn't move like it does when I shiver. I only shivered on the inside from about the center of my mid-thighs, through my internal organs, and up through what I imagine was my brain stem. The first episode lasted maybe 4 seconds, long enough for me to feel it, analyze the sensation and ask myself "what the hell is this?". The second time only maybe 1 1/2 second, just enough to feel it and acknowledge it.

Internal chillblaines? Weird.

Brain Fog

2006-12-01T18:11:00.000-05:00

I either took another Relafen an hour ago, or I didn't. I remember thinking about it. I remember picking up the bottle. I don't remember whether I took one or not. I was sitting right here when then. I haven't done anything else in between.

This is how your brain fogs on mastocytosis.

Oh yeah. I could analyze complex computer programs and write specifications.

I've got to figure out what to do, somehow. Maybe I should see a lawyer and see if he can get me my medical benefits. How I could afford to pay him, I have no idea.

Myalgia

2006-12-01T11:09:00.000-05:00

I felt simply horrible yesterday, but feeling a little better today except that the myalgia has set in badly.

I wish I could take an NSAID, but I dare not. The doctor gave me Relafen which I'll probably take in a bit to see if it helps. Doesn't usually. Not sure if its an NSAID or not. Got it before the diagnosis. I've taken Tylenol but this is some major pain.

I looked up Relafen, and it is an NSAID. I've taken it before though and didn't notice a problem. I never know what will happen.

But, I'm hurting badly so I may chance it. Stomach is still upset, but what the hell.

I need to call the mastocytosis society and see if they can help. Maybe Monday. Still have tons of paperwork to do, both for Social Security and PPA. Hopefully, I can get at least some meds at an affordable price through them.

The worst thing to go without, besides the Gastrocrom, is the Wellbutrin an now the doctor wants to add another....not Paxil, the other one, I can't remember right now.

I've been taking Wellbutrin for years but could go off for quite awhile before I really missed it. Not now.

Damn, this is such a drag.

Bad News

2006-11-30T02:35:00.000-05:00

Good times are over, had an allergic reaction today, so a new episode begins, no doubt.

Aetna has refused to extend my insurance benefits. They say there is no evidence that I cannot work, despite the fact that my doctor is certain that I cannot and filled out the paperwork appropriately.

I cannot work. I barely live.

My job was a Technical Business Analyst. I was responsible for compiling huge amounts of data, sifting through it and writing up specifications for complex computer programs.

You can read what I've written and see that I can't think well enough to do work like that anymore. I used to type perfectly. I was an amateur writer with perfect spelling and grammer and a real way with words. Now, I drop words, I transpose words, I use similar words to those I mean to use. I can barely type a sentence without pausing over and again to try to think of what it is that I am writing, search my memory for ordinary words, etc. I can't even put together a grocery list, let alone write complex specifications. It's pointless to try to proofread. I won't catche the errors.

I have to stay cooped up in my house in an attempt to avoid contact with anything that will cause an allergic reaction. I have had severe reactions to perfume, lotions, grass, insects, clothing dyes in new clothes, detergent, soap, various foods, leaves, dust, medicines, any type of exertion, sunlight, heat, cold. You name it. And the weirdest thing is that I will have a reaction to something, then not have an allergic reaction to the same thing, then have it again. There is no rhyme or reason to it.

I never know what I'll be allergic to. I have never even had a whelp from a mosquito bite, yet, during the summer nights, I mean months, I could step outside for a few minutes and come in with dozens of whelps from mosquitos I guess. Once, in fifteen minutes, I got over thirty whelps. I took four steps out into the grass once, and the foot which was injured received 23 bites from what must have been noseeum's. Tiny, invisible bugs. My foot was covered with sores for weeks and weeks. I still have the scars. That was in August. It's now November.

After any allergic reaction, even a single tiny bug bite or a whiff of perfume for days or weeks I will have an upset stomach. Nausea, diarhea, cramps. I get terribly congested in my head and in my lungs. I get extremely tired and achy. Generally, the full package deal.

I have had a few weeks of almost feeling normal this month, November. I felt pretty okay this afternoon, even though my mom said I didn't look as well as I have the last few weeks. I felt very fatigued but have come to think of that as normal, even though I've had more days of not feeling so tired lately. I went out to dinner with my mother today. I had shrimp cakes which I've had at least 3 times over the last 3 months with no reaction. I had an allergic reaction. My windpipe became constricted, my head filled with mucus, I could hardly talk. I had to use my asthma inhaler and down a H1 inhibitor, Allegra, and 150 milligrams of an H2, ranitidine, just to get to breathing without great labor. I can't afford the $72 Epi-pen, but if I'd had it, I may have used it.

Now, as I write, even after using Afrin, saline spray, and Nasalcrom repeatedly, I cannot breathe through my nose. My chest is very tight. I have a terrible stomach ache. I have diarhea and stomach cramps. I ache all over. I'm very tired but I can't lay down because it makes breathing even more difficult. My limbs feel like lead. I'm only typing to try to stay awake because I can't lay down.

I know I'll be sick for two weeks from this. When I say sick, I mean all of the above, all of the time.

Oh, plus teh itching! Ohmygosh, how could I neglect to mention the itching???!! It's almost second nature now I suppose. Except that the rashes that had begun to flare up badly again in the last few days despite applications of Vanos have now gone hog wild. And not just the rashes. I am itching in dozens of other places right now, all over my body. The itches jumps from here to there constantly. I have to grit my teeth and just try not to scratch because once I start, it starts to look like I'm doing the St. Vitus Dance, scratching wildly all over. So I grit my teeth and twitch instead.

That alone is extremely stressful. The itching is bad right now because of the attack, but it comes and goes all of the time regardless. I have fits of itching. It makes me extremely anxious. I have to take anxiety medication often just for that alone.

I just took a Prevacid, another 150 of ranitidine, a couple of extra strength Tylenol, and one of my last few Singulair. In a bit, I'm going to take one dose of my last four doses of Gastrocrom I've been hoarding.

I've been trying to substitute Nasalcrom for the Gastrocrom. It has the same dosage of cromolyn sodium as Gastrocrom. I has seemed to help, though not approaching the helpfulness of the Gastrocrom. It seems to help the headaches, some of the congestion, maybe the stomach aches but that might be stretching it a bit. The pharmacist said that it would be getting into my bloodstream, not as well as the oral Gastrocrom, but if I did feel some inprovement, it probably wasn't all in my head.

I've been hoarding the samples of Prevacid I've gotten from the doctor, too. It works best, but I can get by with over the counter Prilosec as long as I take it like clockwork and take the 300 milligrams of ranitidine a day.

I dole out the Atarax, too, and try to make do with over the counter when I can, or my little hoard of Allegra. Every H1 blocker sits on my like a ton of rocks though. I can't do anything, but maybe type stream of consciousness like this. If I lay down, I'll sleep for 12 hours straight, at least.

Now, do I sound like someone you would be able to hire to work full-time as a business analyst? Maid? Nanny? Secretary? Gardener? Come on. I'll probably have 3 weeks out of every six months when I'm able to actually get to work. Maybe half of the time I'll be able to get out of bed for 4 or 5 hours a day, maybe shower and dress every three days or so. Won't you hire me and pay me $40,000 a year?

Aetna thinks you will. Aetna sees no problem with me being able to work despite my doctor telling them in writing that there is no way in hell possible.

Full benefits? I only need about $30K worth of medicine a year, a bone marrow test, and medical care at the Mayo Clinic.

Guess I'd better delete that if Aetna finds out about this blog.

Still no word

2006-11-03T20:36:00.001-05:00

No word on the insurance. I'm getting paperwork from lawyers the disability company has contracted with to try to get me on Social Security.

I've just been begging samples from my doctors office. I've been sick continuously now since around mid-May. I had a brief spell of feeling fairly okay April to mid-May.

Being without the Gastrocrom is the worst, since I had a few weeks of feeling better while on the medicine. Not great, but better.

I just have to do the best I can and try to hope.