Thursday, September 30, 2010
Got my new stimulator controller yesterday. Yeah!!! The rep tried to get my old one to work. He punched a button there then another button two times and then an arrow key and a couple of more times. Didn't work. So he punched a button here two times and then annother button there once and then an arrow key once and a plus key a couple of times. Ad infinitum. Made me fidgety - I just wanted to grab the thing out of his hands and say "Stop it!!! I already tried all this with the tech dude. It's BROKEN!" but I didn't. I let him go through every possible permutation three times. He then told me "It's broken." Yep. It was official. He had thoroughly examined it and now it was not only merely dead, it was really most sincerely dead - just like the Wicked Witch in the Wizard of Oz.
Apparently the only program they could salvage was the one that was active when the durn thing broke (or as I think of it - the only program that was stored in my BUTT BATTERY). Fortunately that was my favorite program (#2) which is now my favorite program (#1). He added another five programs so I have six, two that are pulsating like I had them add last summer in Cleveland. I hope to have gained a couple more usable programs because there were a couple I barely ever used. You know, you would think they could have a SIM card or a flash drive or something on the thing so you could transfer your programs, or even some type of graph where they could pencil in your programs but apparently that is a little bit too much fore thought.
Winny (I tell myself) quit getting snarky. You basically got the thing for free. Yes (I reply to myself because I'm kinda wacky this week) it was free and it works and count your blessings. However (and I know now I'm really tired because generally I am not quite this bad) you would think that something that can cost $90,000 would have a backup of some sort rather than the last program you had stored in your BUTT BATTERY. Go figure. I'm sure whoever designed it said we need a backup and the stimulator people said pshaw - these NEVER break down, we get quality parts from overseas (there I go again - forgive me the mind is in backtalk mode; maybe I need to change the program in my BUTT BATTERY).
The Headache is still acting up. I am thinking it will take a few days of the stimulator running constantly for The Headache to calm down. Trying very hard not to medicate as I need to spend time this week at work - have too much to do and not enough brain power to accomplish it. Maybe I can get a brain power boost from my BUTT BATTERY or was that lost with my old controller?? Sigh....
Tuesday, September 28, 2010
Didn't get my controller today, the representative from St. Jude's received it today, but already had a full day of surgeries scheduled. Will get it tomorrow at 1:00 at the A-Team's clinic. Can't happen quick enough.
When you have a stimulator permanently "installed" or are just getting the temporary test implant for trial purposes, the medical device company generally has a representative (who may also be a doctor or nurse) that attends the operation. They help with any technical issues during the operation, and also help test the device during surgery to make sure it is optimally placed. They also help in recovery, going over how to use the controller device and what to expect, and do some intial programming of the device. I understand why the rep couldn't work me in today, but it didn't stop me from being disappointed.
Ai yi yi yi - the brain is very touchy tonight! I am trying very hard to stay positive and to stay out of an emergency room. Today is a "bad" day per my headache cycle. Hoping tomorrow will be better. I am going to drive myself to get my stimulator controller so I will not be able to medicate at all. I keep telling myself to calmly wait, it will be better tomorrow. Stop the woebegone attitude brain, and settle your britches as my Grandma would say!
Thinking of flowers and puppy dogs and cute kittens with rainbow skies. Wondering if I skip around the living room three times widdershins I can wish The Headache away. I think I am suffering from goofy brainitis tonight. Maybe my mind will return when I get my electrical fix tomorrow!
Monday, September 27, 2010
I was told when the occipital stimulator was installed that there could be some "crosstalk" between the occipital nerve and the trigeminal nerve, the supraorbital nerve and my facial nerves. These nerves do not touch the occipital nerve network, they sorta interweave their nerve networks with the ends of the occipital nerve network. The idea was that as the occipital nerve received stimulation it could somehow influence (chemically?, electrically?) the other nerves and problems I have with facial pain could be improved.
I was looking up allodynia (which is an exaggerated pain response to normal stimulus) and stumbled upon a link from the National Institute of Health (NIH) to a site called PainAction. I have signed up, and I'm going to see if I can formulate a pain control plan utilizing their tools. There are four main sections: Back Pain, Migraine Pain, Cancer Pain, and Neuropathic Pain. I definitely have Neuropathic Pain, and I think some of the information under Migraine Pain will be of assistance with The Headache. Too bad they don't have a section called Belly Pain! Then it would be like the trifecta of pain websites!
There is a pain tracking tool, and a section on self-help, and information on alternative therapies. I have downloaded their pain management booklet, and am going to read up on chronic pain and how to manage it. Hoping to get a few new tips that I can use in addition to my daily stretches and biofeedback. I know I need to get back in physical therapy - it did help my endurance this summer as I was able to be on my feet longer without pain intervening. Also the myofacial release decreased some of the sensitivity (allodynia) I have in the radiation fields where I received treatment, so physical therapy definitely is a winner in my world!!
Sunday, September 26, 2010
While trying to divert myself from The Headache and the lack of electricity in my occipital stimulator, I started thinking about a friend of mine from "back home" and her hard work towards fulfulling a dream. I saw pictures of the mountain cabin Heather at War On Headaches stayed at and thought of my friend's log house!
Angie and her husband started building a log cabin/bed and breakfast a few years ago on a beautiful lot in Beaver Bay, Minnesota, but like all of us in our middle years bad health intervened. This year they have picked up where they were forced to leave off, and are on road to finishing the Rasberry Ridge Bed and Breakfast with a target date of 2012.
The Silberbergers are going to great lengths to make sure their business is "green": using downed trees from a storm for building materials, using only earth friendly treatments for the wood, and starting their own organic garden so it will be well established before they start receiving visitors. Not only is their desire to have minimal impact on their surroundings admirable, but for those of us who have chemical sensitivies it is great to find someone that is thinking of this BEFORE a structure is built and guests arrive.
I have been watching their progress all summer long on Facebook. They have the cutest grandkids who "helped" grandma and grandpa with the garden - and now they are far enough along to start a blog about the adventure of starting a B&B. I know Angie from way way back (how far back I'm not saying!) and she always was a woman of determination and purpose, and watching her work towards her dream of an Inn in the wilderness has been inspiring...and a welcome diversion from The Headache!
Saturday, September 25, 2010
Friday, September 24, 2010
My stimulator controller is officially broken. I can have the stimulator set at HIGH, which after a while causes pain from "over stimulation",or I can turn it off. It is now off. The Headache pain has returned in all its glory without the stimulator to fool my brain. I'm trying to go without any medication tonight so I can go into work tomorrow. Not sure if this will work as I'm not certain I can bear with the pain very well.
I missed work today. I have been up and then back to drugged slumber most of the day. I didn't even catch on to the time until a friend called and I happened to hear the phone ring. It was almost five o'clock - where did the time go? Strong medication is not always my friend.
My new stimulator controller won't be in Springfield until MONDAY. That means it will be 4 days until I can get my headache back in submission. Luckily the A-Team and Dr. Hannibal Smith are on the short list of people that St. Jude works with so the controller is going to be Fed-ex'd to them.
I may call Dr. Smith and see if anyone there has a suggested strategy to get me through the next few days without a stimulator. I hate to be just zonked out of my mind for four days - but if the alternative is unbearable pain, I'm going to zonk out! I'm using antihistimines tonight to see if the pain can be controlled with out the heavy hitters, but it's like trying to put out a forest fire with a water pistol - not too effective.
Hoping everyone else has a pain free Friday and a good weekend!
Thursday, September 23, 2010
Today has not been a very good day. It is just a little over a month since my last Bad Headache Day, and I'm in the midst of another one. The Headache has been rebellious and I am still not over it. What is really bad is that I have had an equipment malfunction with my headache controlling occipital stimulator. I tried most of the morning to get The Headache under control, finally resorting to very strong pain medication, and had to call in sick today. I'm not very happy at all about that.
I don't change the settings on the stimulator unless my pain changes. As pain increases I start changing up the programs. I had not messed with it since coming back from Arizona. When I tried to turn it on today, the LCD display that shows me which program I am using did not light up. I could hear it beeping, and THEN it turned itself OFF, as in no occipital stimulator working at all. Panic!!! Disaster!!! Woe!!! I messed with it, replacing batteries, shaking it a little, poking the buttons and finally my head buzzer started up again. Whew! The display never did light up.
I called St. Jude/ANS but by then The Headache was going into the horrific stage in spite of strong medication. I couldn't find my rep's name so I just called their general customer service line, and they got me to research department. Yeah! My name and address were in their database! I think they are going to ship me a new controller since the tech dude couldn't get it to work either. I wonder if somehow being scanned at the airport has ruined it. I worry that my current settings will be lost, and they work so well most of the time.
Later this evening (or technically yesterday evening) I tried to turn down the stimulator, and it started beeping randomly and then turned itself off again. Panic!!! Disaster!!! Woe!!! It took almost an hour of poking buttons but I got it started again. I guess I'm going to have to be "over" stimulated until I get a new controller, because by the time I got the occipital stimulator restarted I was in a world of hurt and I don't want to repeat that. Even the right side of my head is ouchy now, wishing I was through with this episode already.
The Legs and The Belly are also being non-cooperative today. Maybe its the fall equinox that is setting everything off. The hives are worse even with the increased thyroid medication. I was so hoping that the change in dosage would do the trick. Sigh. The problems all seem to feed off each other. Have debated going to the ER, but just don't want to face the wait once I get there. It's going to be a long week. Patience, patience, patience.
On an unrelated subject - just so I'm not the totally self absorbed whiney person I want to be tonight - my sister brought over some homemade pickled okra. I'm not an okra fan - it's just too slimey for me - but her pickled okra was crisp and crunchy. She threw some jalepeno's in with the okra so it had a little kick to it. Hoping there are some left by the time I can really eat something of substance. My sister also makes some delicious home made ketchup and she does it all without a recipe. I shall never be that type of cook - I'm so envious of her cooking skills! I can only follow in her footsteps if she writes it down!
Tuesday, September 21, 2010
Spent the day today taking a relative to a "Parkinson's Clinic". This is some clinic administrator's idea of how to market adjunct services to an already ill clientele. If you weren't ill before you got there, you would be ill and exhausted after you escaped. Got there at 8:00 in the morning and finally left at about 3:00 in the afternoon. According to my relative a lot of time back in the warren of offices there was spent waiting on the doctor to appear. They get you captive back in one of the little exam rooms and it becomes almost impossible to leave, and at a certain point you have so much time and effort invested in "sticking" it out to see the doctor you hate to just walk. The supposed advantage was getting to see a social worker and a physical therapist at the same time as seeing the doctor, except there weren't any physical therapists there. Augggghh!!!
My blood tests have come saying I am not taking enough thyroid hormone (synthroid). Since I have autoimmune thyroid disease and autoimmune hives, my hives are believed to be linked with thyroid dysfunction. More circulating thyroid stimulating hormone (TSH) can mean more autoimmune activity, which in turns causes more hives....which may be why my hives have doubled since discontinuing the prednisone. My TSH should be in a range of .5 to 3, and it was an 11 - meaning my pituitary glad is working overtime trying to jump start my thyroid. I am to give try a week on the new dosage and if the hives don't get better, I'm to go back to the immunologist. Sigh. I have been on a stable dose for the last two years, I guess my body has decided to go into attack mode again. Why can't it attack something other than me??
I am sooooo tired my thoughts are "echoing" in my head, ricocheting around my skull like a superball in a handball court. I have tiny little red hives all over my forehead, in my hair, on my back, and on my legs. I have even bigger hives on my stomach and my arms. The Headache is not happy with me (too much walking I fear) so I am going to take many antihistimines and try to go to sleep. Maybe I can sleep for years just like Sleeping Beauty. You really have to be sleep deprived to wish that a witch with a poison apple would drop by for a visit!
Saturday, September 18, 2010
Per popular request (well, truthfully for my blog, popular means a couple of comments!) I am showcasing my cane BLING tonight.
I started using a cane last spring when I started having foot drop and increasing disability from my plexopathy issues. At first I bought the basic black aluminum cane, guaranteed to go with most of my work outfits and my sensible flat heeled work shoes.
Sensible shoes are sooooo boring. I had to give up wearing heels about 3 years ago because of the plexopathy. Somehow the heels made me feel like a grownup in a grownup world. I am a short little hobbit lady so anything that makes me feel grown up is a plus, because even at 51 I don't feel like an adult most days!
My coworkers decided that a plain black cane was too blah, and threatened to bedazzle the one I had. I had nightmares of shiny rhinestones and feather boas hot glued to my cane. I decided to circumvent their nefarious plans by buying the blingiest cane I could find. I live in a fairly small town, so I don't have a lot of choice of shopping venues but I was pleased to find my cane of BLING at the local pharmacy.
BLING is a basic black cane (again this goes with my business attire and my sensible shoes) but it has silver shiney "scales" carved into the aluminum that catch the light and make it sparkle. In traveling I have compared canes with fellow cane users, and none have seen the same model I have. Many have admired it because it is like jewelry on a stick, but I can't tell them where to buy one. I have looked on EBay and online medical supply and cane suppliers and I can't find any that appear to be the same (I sorta would have liked to buy a couple more in different colors). I am sure there is supplier out there somewhere, after all my pharmacy ordered it from someplace, however once I bought BLING they have not replaced that model.
Carrying BLING makes me jolly about having to carry a cane and wear sensible boring shoes. I am dangerous traveling with BLING because I forget I am holding it and wave my arms around with BLING attached. Sometimes this is really handy, because people keep their distance, and sometimes it is kind of scary especially in airplanes: BLING really starts hitting people in their heads and poking them on their shoulders and stomachs as I try to stow away carry on luggage. I can't handle BLING very well on those moving pathways at airports either - I get it stuck while I am whirling away from it or I can't hold onto the handrail because BLING's handle is in my hand. Shopping with BLING is a challenge because BLING gets stuck in the merchandise and trys to knock stuff off in the floor.
The Headache is not happy today, and The Hives starting popping out again yesterday because I've tapered off the prednisone. My pancreas enzyme lipase runneth over normal - could have gone to the hospital this week, but I am determined to get better without being stuck in a hospital bed. I have plans for once - I am going to meet an old friend who is volunteering at the local MS bikeathon in town. I am sure The Headache and The Belly and The Hives and The Legs are conspiring against me having a nice relaxing visit. Fie on you - you rebellious body! I will have fun regardless...and I will carry BLING with me. All onlookers beware!
Wednesday, September 15, 2010
Back from the mouth of Hell, 1. The illnesses I live with are: hemicrania continua, diabetes, chronic pancreatitis, mast cell activation disorder/mastocytosis, autoimmune hives and thyroiditis, radiation induced lumosacral plexopathy
2. I was diagnosed with it in the year: Hemicrania continua 2008, diabetes 2003, chronic pancreatitis 2009, mast cell issues 2007, autoimmune issues 2009, plexopathy 2009
3. But I had symptoms since: I turned 45 - things went down hill fast.
4. The biggest adjustment I’ve had to make is: not being able to do what I want when I want and living with virtually no sleep oh, and no french fries. :(
9. The hardest part about nights are: headache pain almost every night a 2-3 AM. sigh.
10. Each day I take 17 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have not had success, found it an enormous waste of money but so were most of the real treatments.
19. It was really hard to have to give up: my work towards my Masters Degree.
20. A new hobby I have taken up since my diagnosis is: making new bracelets for my Medic Alert symbol. :)
21. If I could have one day of feeling normal again I would: go visit my nieces and nephews.
22. My illness has taught me: the value of compassion.
30. The fact that you read this list makes me feel: hopeful and glad I participated.
Tuesday, September 14, 2010
Monday, September 13, 2010
The Headache woke up today. Maybe because I did not medicate as much as I did yesterday when traveling home, maybe because of the plane rides yesterday, maybe because of the change in weather, maybe because I am almost stepped off prednisone - who knows?? In order to divert myself I have been researching mast cell biology, histamine and how it works in the body, and H3 histamine antagonists. Light reading, eh?
In my research I found the following article in the online archives of the American Journal of Clinical Nutrition: Histamine and Histamine Intolerance (Maintz and Novak, Vol. 85, No. 5, 1185-1196, May 2007) and it had some information on histamine and migraine as relates to women that I had not read before.
Histamine intolerance is not the same as allergic reactions to food. According to Victoria Groce at about.com (Histamine Intolerance, June 10,2008)
"Histamine intolerance refers to a reaction to foods that have high levels of naturally occurring histamine; in contrast, during a normal allergic reaction, the body itself produces high levels of histamine in response to a food it perceives as an invader. People with histamine intolerance often have low levels of either of two enzymes -- diamine oxidase (DAO) and histamine-N-methyltransferase (HNMT) -- that bind to and metabolize histamine. In these people, histamine can build up over time and cause symptoms throughout the body."Other causes of histamine build up can be diseases such as mastocytosis or increased intake of substances that contain large amounts of histamines (AJCN, Maintz, et al, 2007). The symptoms caused by histamine intolerance include migraine headache, gastrointestinal issues, allergic reactions such as hives, runny nose, and even heart arrythmias (Groce, 2008, about.com).
Some of the common triggers for headaches are foods and drinks that are high in histamine, including alchoholic beverages, foods containing yeast, and fermented foods like saurkraut. Groce states in her article that citrus fruits, while not high in histamine, cause mast cells to release stored histamine so citrus should also be avoided if histamine intolerance is suspected. She states that DAO capsules can be used to supplement deficient DAO levels to assist in histamine regulation. Doing a quick internet search I found various formulations of DAO that could be purchased as nutritional supplements fairly inexpensively over the counter.
Maintz and Novak state that "histamine-intolerant women often suffer from headache that is dependent on their menstrual cycle and from dysmenorrhea." Besides histamines that are brought into the histamine intolerant body by diet, the female reproductive organs also produce histamine in their cellular structure. These histamines work with the estrogen/progesterone cycle and enhance the "contractile" properties of the uterus (thus the correlation to dysmenorrhea and higher concentrations of histamines) and also increase concentrations of estrogen. Perhaps this is why birth control helps some women with menstrual migraine and for others it makes it worse. I'm theorizing (see what happens when I can't sleep?) that high histamine and/or low DAO levels combined with augmented hormones could make histamine intolerant women at higher risk for repeated migraines, rather than helped by control of the menstrual cycle.
DAO levels increase up to 500 fold in pregnancy, which may be why some histamine intolerant women have migraine remission during pregnancy (Maintz, et. al, 2007). Histamines are linked to vasodilation in migraine, and increased number of mast cells (which store histamine) have been measured in other headache conditions like cluster headache (also known as histamine headache) or headaches caused by other health problems like multiple sclerosis. Triggers such as alcohol can be tied to almost all headache conditions, showing that histamine mediation or intolerance could be part of the mechanism. The AJCN article gives lists of medications that increase histamine or depress DAO levels (suprisingly verapamil was one), foods high in histamine, and foods that cause histamine release. Maintz and Novak give guidelines for how much histamine can be tolerated safely in higer histamine foods, but feel, based on studies, that sensitive individuals might have problems when consuming histamines at about 75% of the upper limit.
There are other articles out there linking H3 histamines (the histamines that directly affect your central nervous system) to sleep and mood disorders, cognitive dysfunction, weight gain, schizophrenia and the functioning of the hypothalmus. One article, "Histamine H3 Receptor Antagonists: Preclinical Promise for Treating Obesity and Cognitive Disorders " (Esbenshade, Fox and Cowart, April 2006 vol. 6 no. 2 77-88) in the online pharmacological journal Molecular Interventions, states that H3 receptors act
"as..presynaptic autoreceptor[s] to modulate the release of histamine, a neurotransmitter that plays a role in vigilance, attention, impulsivity, and feeding/weight regulation... presynaptic H3 heteroreceptors modulate the release of other important neurotransmitters, such as acetylcholine, norepinephrine, dopamine, and serotonin"Knowing the concomitant incidence of depression with migraine and associated headache disorders I was not surprised to see that histamine levels in histamine intolerant individuals could also affect such mood regulaors as dopamine and serotonin. Some medications that are commonly prescribed to headache patients and chronic pain patients (amitriptyline, verapamil, narcotics) either directly affect histamine release or inhibit DAO synthesis. Just wondering if DAO supplementation would help this also? Wishing there was a wonder drug that could help every thing for every body!
Not sure (due to lack of sleep or lack of brain cells) if I'm just spouting junk science or if I'm comparing apples to oranges here [guess the oranges should be off the list - citrus = histamine release]. Maybe I am making sense, maybe not, but I am thinking maybe I will order some DAO and see what it does. My luck I will have an allergic reaction to the DAO instead of it helping with my overall histamine levels. The best consistent pain relief I have on a day to day basis are from very old histamine blockers, benedryl or vistaril and phenergan (promethazine). Compazine, which I have been given in ER's for headache prophylaxis, is another very old histamine blocker.
Thinking of trying to eliminate more histamine containing foods from my diet. I cut out quite a few last year, but have added some back. Maybe that's why the sudden "flare" of hiving/angioedema? Fresh fruit is my downfall I think. Sigh. I guess I will go to the International Chronic Urticaria Society web page and check out their low salycilate/low histamine diet lists to refresh my knowledge. Thinking about the low salycilate diet because aspirin is on the list of histamine releasing/DAO inhibiting drugs and almost all foods contain salycilates (aspirin family). I have walked this road before, but it doesn't hurt to go down it again to see if now it no longer is a dead end.
Probably no good amount of sleep tonight for me, as I have amassed my full array of non-narcotic remedies tonight yet The Headache persists. I have a PCP appointment I forgot so hoping to get a few minutes sleep! Hoping The Headache will behave before then! I need to be at work.
Thursday, September 9, 2010
Just a quick post from the hotel communal PC. Good business trip, getting a lot accomplished. The Headache has behaved itself, but The Hives and The Legs are not happy. Last time the boxelder bugs had hatched, now huge cicada's are hopping their way around as big as frogs, but at least they are not in my hotel room. I swear they are about as big as a house - scary like alien bugs. They look like they could just carry off small children and pets.
Tomorrow is our last day here for awhile. Very positive group of people here, very excited to learn new methods for doing things. Sometimes when clients go through a system change over anxiety rules because it is the unknown that is scary and the known that is comforting. Everyone here has just calmly taken all the changes in stride, moving forward with determination and cheerful effort. I'm just going to have to refresh my faith that I can move forward in my life in the same way.
I fly back home Saturday hoping maybe I can get an earlier flight on standby in Dallas or else I will have about a 4 hour layover. I guess that will give me some time to get some reading done!
Tuesday, September 7, 2010
Prednisone and my allergic reaction are still keeping me from sleep. I did nap a little yesterday and today, so I think I may have had a total of 8 hours of sleep in the last six days. I don't think I will even bother to try tonight - I need to be at the airport by 7 am since I have to be hand patted down because of the stimulator and I'm carrying a bucket load of medication including a fair amount of liquid medication and that throws the TSA screening completely out of whack.
I bought a backpack today that I can carry my laptop in if needed. I have a laptop case on wheels but its just too large for these little planes I have been hopping. I'm not going to take my ancient laptop with me this time; its very heavy. It contains some legacy software that won't load on the newest versions of Windows, so the old thing is necessary but it weighs a ton. I went into work and printed off some materials, gathered up some thumb drives with info, and worked on a couple of more projects that I just didn't have the concentration to finish. I'll use the backpack this time to carry my medication, my plane pillow, my plane blanket, my reading material, my printed training materials and my chewing gum (my ears pop too much when I fly so I chew gum).
I'm still having swelling in my throat, my lips, my baggy eyes, and a lot of edema in my lower legs. All that fluid has to go somewhere and gravity dictates where. It seems to be somewhere my kidneys can't grab it until it gets down to my feet and then it gradually will disappear. Hoping that flying this week won't aggravate it - in the past I have blown up like a balloon during the flight when still in the process of hiving. Not sure why - maybe it's the inactivity or just the crowded closeness you can't avoid with nowhere to put your feet up or maybe the pressurized cabin. I'm glad to go see our clients - wish I had been able to go last week but since I had this durn flare of hives it probably was a good thing I didn't.
I guess I will sleep on the plane flights tomorrow if I can, and on the ride to the hotel. That is a definite advantage of being very very very very very sleepy. I quit driving for work purposes this summer - the medication levels and the daytime sleepiness were not good combos for driving, nor were my tingley numb legs. I just don't want to expose the company I work for with any liability for my impaired ability to drive, so I will be chauffered by coworkers all week. They are all great drivers so I'm happy to ride. If I wanted to strike out on my own in the evening the hotel is just a couple of blocks from fast food places and Wal-Mart so I could walk there easily.
Haven't packed my bag yet. Not sure what I am waiting for. Procrastination is not my friend. I think my brain is just so tired from not sleeping and being on prednisone overdrive that even making small decisions is hard. With the swelling still active and the hives and angioedema trying to revive about 18 hours after I take the prednisone I don't think I just stop taking it. I will be in trouble if I try. I did buy some liquid benedryl capsules today, as they are a little more quick acting than the tablets. I'm out of my benedryl/phenergan skin cream so until I get it ordered at the compounding pharmacy I will have to depend on oral dosing.
Let's see - I will be carrying at least 18 medications with me. There are probably a couple I have forgotten. Almost all of those medications this time are to manage my hives. Costly problem. Wishing it would go away puhleeeese. Ah well, enough fooling around - I better decide what outfits I'm going to wear next week and get things done. No one's going to do it for me. At least when I leave on a jet plane I know when I will be back again - next Saturday this time!
Monday, September 6, 2010
In 2004 I was diagnosed by endometrial biopsy with complex endometrial hyperplasia, probable endometrial cancer. I was just a month shy of my 45th birthday. I scheduled a hysterectomy as quickly as possible, not knowing when I went into surgery if the cancer was too far advanced for surgery or I would come out with a hysterectomy and early stage cancer.
Endometrial cancer is the fourth most common cancer in women. It is over 90% curable if caught in the earliest stages. There is no easy test to see if you have it. My pap tests always came back OK. Most ladies that are diagnosed are past menopause so symptoms like unusual uterine bleeding are more obvious, but a small portion are like I was, still fertile. This is my story of how I was diagnosed and how I should have listened to what my body was telling me rather than a physician. Do NOT do what I did and put off fully investigating female health issues.
In 2000 I began having symptoms. I had them checked out, since almost all the women in my mother's generation of her famiy had hysterectomies and I did not know what a normal menopause was like. I thought I might be going through premature menopause. I was working more than full time as a manager, and finishing a college degree so I was spending a lot of time at work or doing homework. In 2002 I decided that the corporate climate was not for me and decided to move companies. Before looking for another position and quitting my very lucrative job with great insurance benefits I again had everything checked out because I didn't want a new employer to have the burden of someone who was going to right away have a hysterectomy. I had an ultrasound of my uterus, a CT scan of my abdomen/pelvis, and an IVP of my kidneys. Again I was told not to worry, everything was just fine, I didn't need a hysterectomy. My gynecologist told me I just had fibroid tumors, don't come back for two years. Relieved I found a new job and changed career paths from giant MegaCorp Insurance Company to the small software firm I work for now.
In 2003 I started having urinary tract infections that wouldn't clear up. My new PCP (for my new insurance) sent me to a urologist for a cystogram. I was told there were structural problems. I agreed, saying it feels like my right kidney is being pulled down and my bladder was being stomped on. Something did not feel right. The urologist pooh poohed this and said I was just overweight and I needed a "bladder sling" operation to hold up my bladder. Yes, I was overweight and gaining more and more in my lower abdomen as if I was pregnant, yet I knew I was not pregnant. I was eating less and less trying to control the weight and I started feeling really tired. I started having clear mucous like discharge between periods and the bleeding was getting heavier. I started getting a round face, very puffy, and my legs and feet started swelling so I couldn't tell I had calves and ankles. I saw myself in a window reflection once and didn't even recognize me. I refused to have the bladder operation - it didn't seem right for some reason.
In the December of 2003 I was traveling for work and was actually trying to run across the Atlanta airport to catch another flight carrying my laptop case. Halfway across the airport I started to bleed profusely even though it was not time for my period. The gynecologist in 2002 told me that I might have some trouble like this because of perimenopause. I had to stop, buy something to wear, change clothes and missed my flight - it was another 10 hours of misery until I got home. It was so bad I debated about going to an Atlanta hospital to be checked out, but decided to make an apppointment when I got home.
Because of my prior diagnosis of fibroids and perimenopause, and the holiday season, I did not get an appointment until February 2004 to see a new gynecologist because I refused to see the old one - I didn't like the fact that he kept telling me nothing was wrong. My abdomen was getting larger, the puffiness was worse, I was exhausted, and the bleeding now happened if I picked up anything, or moved too quickly. I should have been more concerned, but I was still thinking it's just fibroids.
Some cancers are staged by the surgeon, and some cancers are always staged by the pathology. My surgeon staged my cancer as stage IIB uterine cancer because the cancer had superficially started to advance into the cervical neck however the pathologist staged it as stage IC, grade 2 endometrial cancer, adenocarcinoma . The surgeon did not remove any lymph nodes since he knew that I would need radiation therapy regardless, but that makes the pathology incomplete (no nodes taken). The treatment is the same for both stages, so I guess it doesn't make any difference, but I use the pathology staging because the prognosis is better. The cancer had invaded into the myometrium approximately 75% through from the endometrium invading the vascular and lymph layers of the uterus. I received 25 treatments of external beam radiation therapy to my abdomen, and 3 high dose rate vaginal brachytherapy treatments. I have been cancer free since but have complications from the HDR brachytherapy.
If I had been more agressive with questioning my first gynecologist, my old PCP, and the urologist I might have been able to have the hysterectomy way before the cancer got the size of a football. I pulled all my imaging reports from the past after the diagnosis of cancer, and found that the radiologists who read them years before my hysterectomy were suggesting that I needed further investigation, possible biopsies due to abnormalities, and not one mentioned a fibroid tumor, just a suspicious mass at the top of the uterus and a grossly enlarged uterus with a very thickened endometrial lining.
Why didn't my physicians interpret the results the same way the radiologists did? I don't know but I pull all my medical records on a regular basis now, and read the results myself. The gynecologist who twice told me there was nothing wrong is no longer practicing (thank heaven). The old PCP I had is working as a college physician giving out flu shots and birth control pills to students - appropriate for her skillsets I think. The urologist who told me I was just over weight and needed a bladder sling apologized and admitted he had made an error in judgement. I no longer see him.
So don't do as I did and blindly trust professionals to do their jobs correctly. Don't do as I did and ignore your body and obvious symptoms. Don't do as I did and delay getting an appointment with a gynecologist if you feel your problems need quick attention. If it is possible find out what problems were found in the female lineage of your family. There was a strong history of endometrial cancer in my mother's very large family that goes back 3 generations, and also colon cancer - these two types of cancer can be related, but I had never asked. Please check out the NCI cancer website concerning women's cancers at http://www.cancer.gov/ and familiarize yourself with what symptoms to look for and what preventative steps to take and what testing needs to be done in order to live a longer healthier life.
Sunday, September 5, 2010
Diana Lee at Somebody Heal Me has surprised me by nominating this blog for the One Lovely Blog Award. I am sure it is all the beautiful renderings of my all time suffering big old head that is the Lovely part! Thank you so much DL, I needed the uplift tonight!
Here are the rules from Diana Lee:
- Accept the award and post it on your blog with the name of the person who has granted the award and his or her blog link.
- Pass the award to 15 other blogs that you’ve newly discovered. (if possible)
- Remember to contact the bloggers to let them know they have been chosen for this award.
I am kinda worn out - I'm hoping to link to 15, not sure if I will make it that far, but I will try!!! I hope I don't renominate anyone Diana has already nominated - my mind is a bit disorganized on day 3 of no sleep.
1) Bits and Odd Pieces of the Kingdom by the Princess of Everything (and then some)
2) Bury My Blackberry in Africa by the Partners for Care
3) Chronic Migraine Warrior by Jamie Valendy
4) Confessions of a Gypsy Princess by Gypsy Princessa
5) Donna's New Day by dmlsexton
6) Drivel and Whatnot by Heather The Driveler
7) Elizabeth's Migraine Blog by Elizabeth Wakefield
8) How I Visit Mickey Every Day by Kristen
9) Living with Mastocytosis by Bridget
10) Mama Bears Thoughts by Debbie Jean
11) The Masto Mama Chronicles by Masto Mama
12) Migraine and Other Headache Disorders by Nancy
13) Through the Words of Chronic Pain by A Fighter
14) Walking on Water by tmkimberly
15) Sally's Adventures at MD Anderson by Sally
Check these out - some may be new to you, some may not but they are all "good reading"!!! It's 3:30 AM and no sleep yet - I guess I'll see dawn without sleep one more day.
Saturday, September 4, 2010
Thursday, September 2, 2010
Went to my new immunologist Dr. Calm today to see about my hive outbreak. He has reviewed my records and thinks I may be having a flare up of mastocytosis. I told him that I have had intestinal biopsies and a tryptase level taken and they were all negative for mastocytosis, and he said that negative tests did not rule out mastocytosis, and that there wasn't any single test that could rule out mastocytosis - symptoms said more than tests decide the diagnosis unless you showed a definite postivie test. My continued allergic reactions and growing list of medication sensitivities (apparently muscle relaxants are a known issue for persons with mast cell disorders so no wonder I had problems) hives angioedema and the abdominal cramping I get with a bad hive "flare" are all symptoms. Headache can be a symptom and multiple chemical sensitivity problems.
I got a bunch of blood tests done (ha ha - I was prepared and drank a lot of fluids before going there!!!) No problem with the blood draw although they had me marked to use a hypodermic and butterfly instead of the standard vacutainers so I guess they keep track of people like me who have trouble with blood draws - efficient for a change!! I am on prednisone with a taper per my request because my hives tend to double back (get worse) if I don't taper prednisone.
I am going back on Gastrocrom, a medication you drink four times a day with water - it is supposed to decrease the number of mast cells in your digestive system. It's not very convenient to take because you have to carry these little plastic vials of liquid with you everywhere. The pharmacy has to special order it, but I had some from the last refill I did about a year ago that should still be good (it's light sensitive so you keep it in a box of foil wrapped packages in a dark cabinet). Dr. Calm said that it won't help my hives (it certainly didn't do that before) but it should help some of the belly pain. Hoorah for that! I have to take 8 vials per day, and its sorta flat salty tasting even diluted. Guess its no worse than Gatorade!
The hives are some better tonight after prednisone although my angioedema (swelling of the lips, under the eyes, ears, inside the ears, my vocal chords, inside the nose, and it feels a little like my tongue at the moment, plus my feet and hands off and on) is worse. It always is worse on day two - don't know why but when the hives starting popping back this morning inspite of my medication of the night before I knew I better get to Dr. Calm to get something to stop the progression. I worked a couple of hours, but didn't get to stay as my face had started to swell. I tried to skedaddle before the lips became Angelie Jolie lips.
I was a bit upset this morning, not only because prednisone kills my stomach and pancreas, but because Dr. Calm wanted me back on the Gastrocrom which is a pain in the patootie and he wants me to consider taking cyclosporin, a heavier duty immune suppressant, to get things back in control. I know the longer the hives stay flared up the more danger I have from anaphylactic reactions, which is truly life threatening, but more medication is not what you want to hear when you already have to travel with a handbag full of medication.
I go back in a month and maybe the blood tests will be the decider for me on the clyclosporin. My blood sugar goes too high on prednisone, my body rebounds from it so maybe this will do the trick quickly. Dr. Calm did say I probably should only take Botox for The Headache if I have a tiny tiny test dose first maybe in the upper arm to see what happens, and it would be no guarantee that I would not an allergic reaction. I guess Dr. Hannibal Smith is going to have to take that off my possible treatment regimens, because kind of like The Headache I try very hard not to rile The Hives.
I'm traveling next week. Praying that I will be able to stick it together for another week. I would love to have a full month of good health and feel back to my normal level of work. At least now I thank heaven my very very nice bosses have a trainer, and now a medical billing/coding specialist! If I fall by the wayside like the walking wounded I am I won't be leaving them in a bad place personnel wise. I just need to hang on for a few more months and get the new guy (who is soooo organized and willing to learn!) trained, then some of the sleepless nights where I worry about my employer I can worry about something else! You know, if I didn't have supportive bosses and co-workers I would be SOL (or FUBAR as we said when I worked with military veterans). This is a great advantage of working where I do, and the awful dilemma of having landed a job I love with people I enjoy but physically difficult for me to be well enough to work productively. FUBAR indeed.
My boss, The Big Guy, turns 60 tomorrow. In my family not a lot of people live to hit 60 so I hope he can celebrate with happiness. I'm gonna be dancing the happy dance if I make it - only nine more years to go! At the rate I seem to be accumulating maladies I fear its going to be a tight race to the finish line for me.
I am including some links to discussions about mastocytosis by specialists, and how it is often missed as a possible diagnosis. Most adults who are diagnosed with mastocytosis are middle aged by the time they get a diagnosis. Maybe it is my causitive agent for everything - The Headache, The Belly, and The Hives. I'm afraid The Legs can't be blamed on it. Worried about the cost of additional meds. Sigh and sigh again.
Wednesday, September 1, 2010
Urticarial Wheals Are Being Served
Woke up this morning feeling a little out of energy. I went to bed last night earlier than usual and was awake and stirring earlier than usual. There was quite the rainstorm going through the area, so I waited a little to start my commute to work. I thought maybe the lack of energy was due to the storm. The weather moving through the area had caused The Headache to poke and stab several times in the night. I had my daily 2 am jab to the temple to complement the other stabbing pains, but they all only lasted a few minutes so overall it was not too bad. Stopping the Klonopin brought The Headache back into the almost manageable range again, so I was correct in thinking it was the medication.
Went to work, had to have my heater on in my office because I was way too cold. Ate a fast food lunch which is an uncommon occurance since The Belly and I agree not to eat at work. Eating makes the continence issues or lack thereof more of a problem, so I try to limit food and drink during working hours. Didn't feel too well for most of the day, had taken zofran for nausea before lunch, and then was not feeling too hot after lunch - which I attributed to the amount of fat in my food : there was much more than the 5-6 grams of dietary fat I try to keep to with each meal, but it might have been the hives starting to act up.
I always have some hives somewhere on my body, have since 2007. They almost disappear some days but in the evening they are always worse. I've been diagnosed with autoimmune chronic urticaria so I'm allergic to myself more than anything else. Driving home I looked in the rear view mirror and noticed my forehead and face were getting bright red, and my ears and the inside of my nose were feeling mighty itchy. This is not a good sign for me. It means the hives are getting ready to pop out, the mast cells are gathering to degranulate, and I am going to have a miserable night trying to resist itching.
Are You Being Served?"
I have now taken 25 mg hydroxyzine (Atarax/vistaril), 50 mg diphenhydramine (benedryl), 25 mg promethazine (phenergan), and 5 mg montelukast [Singulair] but I'm still broken out and still getting new hives. They are not as large or as tightly grouped as they were so maybe this combo will slow things down. I have epipens but really don't want to use them unless it is totally necessary. The interior of my nose is a little swollen but I don't feel my vocal cords swelling so hoping I knocked the hives back enough that I won't need to use epinephrine. I feel like I'm starting to get hives on the bottoms of my feet which is not great either. I have ranitidine (zantac) which is an H2 blocker I can also take. Most of what I have taken have so far been H1 histamine blockers with the exception of Singulair which is a leukotriene inhibitor. Generally the H2 blockers don't help me too much.
Wondering if the fast food restaurant cross contaminated my food with fish or seafood products. I have to be extremely careful when eating out but most fast food places have good processes where either they warn you that cross contamination is possible or they just don't cross contaminate seafood/fish with other foods. The inital help from the medication is already wearing off, and it's only been about an hour since I took it. Gonna be a long itchy night at my house tonight! Trying very hard not to be whiney but I itch so badly. Waaaaah!