Tuesday, January 29, 2008
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.
Atavan (2 or more)
Darvocet (pain is worse at night)
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.
Monday, July 09, 2007
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.
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.
Sunday, July 01, 2007
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.
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?
Friday, June 01, 2007
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.
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.
Thursday, May 24, 2007
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.
Friday, May 04, 2007
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!
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.
Saturday, April 28, 2007
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.
Tuesday, April 17, 2007
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.
Friday, April 13, 2007
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!
Tuesday, April 03, 2007
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.
Wednesday, March 21, 2007
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!
Saturday, March 10, 2007
Friday, March 09, 2007
Wednesday, March 07, 2007
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.
Monday, March 05, 2007
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.
Wednesday, February 28, 2007
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.
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.
Tuesday, February 27, 2007
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 firstname.lastname@example.org.
Saturday, February 24, 2007
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!
Thursday, February 15, 2007
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.
Wednesday, February 07, 2007
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.
Sunday, February 04, 2007
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!
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.
Wednesday, January 31, 2007
In addtion to the U.S., the site has been visited by people in:
London, Leicester, and other folks in England
San Juan, Puerto Rico
?, Saudi Arabia
230 visitors have found this site in January alone. I hope some found the answers they were seeking.
Monday, January 29, 2007
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
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
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
Wednesday, January 17, 2007
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
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.