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.
Wednesday, January 31, 2007
Monday, January 29, 2007
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.
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.
Wednesday, January 24, 2007
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.
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.
Tuesday, January 23, 2007
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.
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.
Thursday, January 18, 2007
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.
Wednesday, January 17, 2007
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.
Monday, January 15, 2007
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.
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.
Sunday, January 14, 2007
Daily Diary - Yesterday
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.
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.
Saturday, January 13, 2007
Daily Diary - Darwinistic
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.
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.
Friday, January 12, 2007
Opening Eyes
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
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 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.
Wednesday, January 10, 2007
The Mind Meltdown
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]
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
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.
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.
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