Risky

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!

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

Sign the AARP petition for affordable healthcare and prescriptions here.

Pain, pain go away

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

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

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

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!

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

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

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,

Itchy witchy

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

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

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

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...

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

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

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

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

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.