HI I'm new here and trying my best to get through the emotional part of finding others like me.I joine monhs ago, but couldn't read far without crying.
 It was because of this very forum that the doctors and I started to suspect my problem to be a mast cell disorder. Sadly we discovered this during the last week I was covered by insurance and the tests needed to confirm havent been done yet.
 Maybe in the end this won't be the diagnosis.All I know is for the first time here I saw others living in the same hell as I do.
 Three years of doctors , putting me through hoops, and looking at me like I had gone insane as I tried to describe my symptoms, like so many others here.
 I have gone down in anaphylactic attacks in weird places , for no apparent reason, been DRUG tested , because doctors assumed it was due to drugs, questioned and requestioned. Had emts tell me they never would have believed it , if they hadn't seen it.
 So I'll start at the begining for me, 6 years ago I started getting weird symptoms. I was so tired all the time, my eyes swollen, post nasal drip , and started breaking out in hives about 4 or 5 times a week. Over 2 years time the hives got more often and during the attacks my speech and thought would slow down, I would get dizzy , naucious , and my stomach would lurch as my bowels tried to empty everything I had ever eaten. I ate more and more over the counter antihistamines , until I worried I was going to kill myself. Finally I went to the doctor when I was able to get medicaid. I was sent to multiple allergists in North Carolina , some of which were quacks, and have lovely pictures of myself that look like I have over 100 cigarette burns down my back. (from the allery test one did) and took almost two months to heal. They did blood tests urine test and though things came up abnormal here and there , they had no answers.
 I had a seperated rib, that one doctor diagnosed as gas pain. Started to feel like I had to urinate all the time, and feel like my liver crawls beneath my ribs 24/7. My stomach will be flat one day and swollen like I'm eight months pregnant the next. I have hives now 4-5 a day , even on meds. My feet have swollen and gone down so many times I have large deep wrinkles in my heels My bones and joints ache and I could sleep a month if left alone.
 I have a list of over 200 things I can't go near, and never leave home without my teenage daugter with me.
 When I have an anapylactic attack and have to go to the hospital ( I don't go unless I'm about to meet the reaper) I cannot find words in my mind. I can unnderstand them , but my brain cannot find words to respond. For example when asked my address all I could say was 1. I am looking for words in my head and it's like an empty warehouse. I lose conciousness, feel like someone is sitting on my chest. My heart rate is around 160. The flushing feels like I'm being burned alive , and I have more hives than normal skin. I am a red woman with white spots at that point. It takes about 6-8 hours to get me lucid, and by that time I am facing a doctor demanding to know what kind of drugs I took.
 I am on hydroxyzine, and often have to take benadryl with it to get past the hives. I take prednisone 20mg a day.
 I have to go to the doctor this week, and since my prednisone RX had expired I'm scared they will take me off it. Without it , I can't go outside when it's over 75 or sweat even a little without an attack. I'm scared. I'm a mom of 5 and I need to be better.
 I'm sorry for the rambling nature, but as I said I'm emotional right now.

Thanks Lisa ,
 I'm working on the emotional. Thank you so much for the welcome and the great advice. I wish I had found you sooner , but I was suffering from the delusion , that Doctors, not me, would figure it out.
Silly me.
 I hope to have better news to share in time to come, as I get more of a hold on everything.
*kicking my shoes off*
Joanna

Welcome!

So sorry about everything you've gone through and I understand the mixed feelings.

Lisa has given great advice. She helped me loads when I was at my worst.

Just to add I needed steroids at first to stay stable but after a year long slow taper and starting some other meds (which may or may not have helped) I am off steroids and feel so much better. I have to say the steroid side effects were making everything so much worse and while I still am battling reactions and sorting out triggers I at least feel like "myself". You will get through this and it is wonderful that you have been so determined to sort yourself out.

Each of us is unique as far as triggers, meds etc, so keep us posted on how things are going

The rejection and misjudgment by the ill informed can really wear a person down. Stay strong! We are here to support each other.

you've probably already done this but keeping track of everything you ingest and are exposed to, temperature, emotions and symptoms can help sort out triggers.

Amazing that you are raising 5 children through this. You deserve many hero medals!

Hi Joanna and welcome to the forum,

  I agree with your needing to see a mast cell disorder specialist, and can't urge you enough to get on the phone or email and make an appointment asap.  It's so hard when you don't have adequate medical support.

  The biggest impediments to feeling better are often too little and/or the wrong medicines, a diet that makes symptoms worse, and stress.  If you want to post your daily medicine schedule, dosing, etc., people on here can tell you if it appears you need more, less, or different meds to help control your symptoms.  Of course you'll want to follow the recommendations of a mast cell specialist, but the forum here will help you learn what kinds of and how much medicine most people with this take to minimize symptoms.

  If you think you react from foods, it's important to find those food triggers and eliminate them from your diet.  A good place to start might be the low histamine diet which is discussed in posts by Deborah under the Nutrition topic.  If you try that diet for a month of so, you might notice some foods that contribute to your symptoms.  

Some people have tried and had some success with gluten-free diets, additive-free diets, low salicylate diet, and more.  Unfortunately, food intolerances/triggers of symptoms are individual, and it's pretty much trial and error to figure it all out.

  Stress can be physical or emotional, happy or not.  Heat is often a trigger.  There are very few things that cause flushing, and mast cell disorders do.

  I was told to see a psychiatrist, there was nothing wrong with me, and had doctors give up on me repeatedly before I got diagnosed.  You're very close now and with help of a specialist and figuring out your triggers, you should start to feel better soon.  It's baby steps and not a straight line to feeling well, but the worst of it should be in the past soon!

Joan

Joanna, without a doubt STRESS is a MAJOR trigger for us and this is due to the fact that the stress system has a number of mediators which are direct mast cell degranulators.  This is why physical stress as well as emotional/pscyhological stress are very important to keep under control.   And this is also why extremes of temperature are as well for the body sees these as a threat and by seeing it as a threat it triggers the stress system which in turn triggers the MC.   So, as you can see, anything which is going to trigger the stress sytem is going to make you "feel" it.  

As to the heat, if you must, get a t-shirt wet and wring it out well and put it on over you bra and stay in front of a fan.   I live in Brazil and this is my summer survival gear.  And yes, I´ve got 3 children, sons, and being a consciencious mother, I am careful as to how things appear and so I make sure that the T-shirt is dark and won´t cling.  Or I am in my bathingsuit with a wet-tshirt over it.  This is surival gear we are talking about here and since I don´t have AC in my house I must find other means of keeping COOL.  not cold.  I live with fans going all the time and even at night, if it´s too hot I will get a wet towel and sleep with that over me.  If I don´t, I´ll go into anaphylaxis it´s that simple!        And where I go, the fan goes with me, I´ve got to have constantly moving air on me in the Summer, whether I´m cooking, sleeping, watching TV or working in the house or if I´m at work in front of the computer the fans must be always on the go.   And if I begin to feel bad in some way, then if it doesn´t pass within about 10 minutes, it´s time for extra antihistamines then.  It´s the only way I can manage to keep stable.  Otherwise, I´m always taking a beating.

So, with 5 kids, PEACE is also a big issue.   There are times, Joanne, when you´ve got to find time ALONE - TOTALLY ALONE.  Just the commotion that a big family gives is stressful to your nerves - the sounds, the needs, the just living of life.  You must find time to be alone and to just STOP especially when you are reacting.  If you are reacting, then keeping your body´s physical activity down to a bare minimum is essential!!!   Anything which causes you extra stress, be it physically, emotionally or psychologically is going to cause MC degranulation.  So, when you are reacting, you must just force yourself to STOP.  So, if that means getting your kids to do some cooking, be it grilled cheese sandwiches or heating up some soup or whatever, and giving you the day off, then PERFECT!  This is what teens are all about, wanting to become INDEPENDANT and the more independant you can help them be, washing their own clothes, cleaning the house, making meals when you are sick, this is GREAT for not only are you teaching them to be responsible, but you are helping them to take care of you when you are needing it.   A win/win situation!


Oh, and one more thing.    Joanne, we all know how tight things are and I´m one of 6 kids and have 3 of my own, so I understand how tight life can get.   I know that you said you lost your health insurance, but sometimes it´s worth paying privately for a doctor and I think that if you speak with Dr. Lichtenberger, since he is closest to you, he may help you to work out a means of paying for his fees.  Another thing is, Joanne, this is a RARE disease.  I know that it´s not easy to accept that not just any doctor is going to know about masto, but they aren´t.  You are making an INVESTMENT in your health and well being and even if it is a couple hundred dollars to have to plunk down, would you not do this if it were one of your kids and don´t you end up spending in a blink of an eye that much money on silly stuff at times?   Besides, if you speak with the doctor, explaining your situation to him, you give him the opportunity to see what he can do to help you for there is not a person in the world who is not feeling how tight life has become!!!    I was so blessed when I had doctors at Cornell University, upon hearing that I had no insurance to be operated on within the US decide to totally wave all of their fees and donate their work in order to save my life!!!   The senior surgeons of the university chose not to accept my case for surgery so my surgery went on down here in Sao Paulo, but I was so blown away at the incredible generosity and graciousness of Dr. Basson and his colleagues who were willing to operate on me for FREE!!!!  

So, even though you may feel embarrased by your situation, don´t be ashamed for it´s nothing to be ashamed about.  You never know how the doctor may respond.  He may not be able to wave his fees, however, he may make it easy for you to pay him and still be treated by him.   These doctors, Joanne, they really do understand that we go through YEARS of suffering because nobody recognizes the disease.  They also know that we are very often in serious danger due to the risk of anaphylaxis.  We need help NOW and YESTERDAY and many of us instead go through years of crisis after crisis without any relief or attention and we must have help IMMEDIATELY.

So, please, reconsider waiting to go see Dr. Lichtenberger.  He´s the closest to you and he may be much more receptive of you than you think.  


Lisa

I also wanted to warn you that colored benadryl can be a trigger!  I have found the blue (marketed as a sleep aid) is the safest for me!

Lisa I am taking all of your advice to heart. I'm trying to process this week. Does it sound stupid to say I'm grieving a bit?
Thanks to all for the advice
Joanna

Joanna, you're experiencing LOSS, grieving is part of the process of healing!!!  

I know what you mean and I suspect that it takes a while to come to the place of finally accepting this kind of loss.  That is because it's not a one time type of loss, like a death is.  Sometimes it's a little here and a little there as you go along and realize what you are unable to do anymore or what has limited you.   Just today I came home from church feeling this very kind of grief and that's because I was always very active in singing cause my church loves to sing.   Unfortunately this triggers me due to changing my breathing rhythm and putting pressure on my abdomen.  I've not been able to figure that one out yet, but this is what happens.  So something I've always LOVED has been taken from me and I may never get it back!  And since I'm a pastor's wife, it was VERY, VERY important in my life!!   It's very hard to accept this!

But, I've got no choice to have to restrain myself from participating for if I do, then I begin to get sick to the point that I've gone into anaphylaxis due to all of the repetitive triggering!   (it isn't just singing which will do this.  When my doctors tell me to hold my breath for an exam or to breath deeply so they can listen to my lungs, only 3 times of this and I'll be out like a light!!!   This has also stolen swimming from me for you can't swim properly without certain breathing rhythms!   )

So, Joanna, I FULLY understand your grief!   I now recognize that this is what people who are elderly feel when they tell us "kids" that they can't do certain things anymore.   Our brains are still young but our bodies have reached their limits and this is where the grief really lies, that of coming to a place in life to recognize your mortality.  Since we are not of that age where we would normally have to recognize it, we continue pushing ourselves to do what we feel is our RIGHT and OBLIGATION and then what happens is that we get the backlash for that pushing and it only hits us that much harder the reality.

Yet, allow me to give you some HOPE  

When you begin recognizing those things which trigger you and avoid them like the plague, and when you learn what your limitations are and LISTEN to your body and begin to be KIND TO her, THEN you will find that your health will begin to turn around.   You see, Joanna, MASTO is a very SELFISH and SELFCENTERED disease.  It´s like a very spoiled teenager who DEMANDS attention and if you don´t give it the attention it wants it will TAKE IT!!   This means that you must not ignore it when it´s acting up, or try to push through it.   You must, MUST, MUST give in and spoil it!!  

Example - when you are tired and you´ve had a hard day and the kids have been tough and you are feeling frazzled and you feel shaky and on the weak side and you´ve been having stomach issues most of the day and you feel like you´re right on the edge.   It is NOT the time to push through it! If you do, you will only PAY for it and so will your familyl in return.   This is the time to recognize your body has come to it's limit and the shakiness and malaise etc are the signs of those limitations.   You MUST STOP and that means physically and sit down and put your feet up for the rest of the night if you must.  You can't get back up untill everything has stopped and you are feeling MUCH BETTER!  This is a rule of thumb when it comes to being right on the edge of a crisis, and the other rule is to take some antihistamine to help settle it down.  

Listen to your body, Joanna, this is the  2nd rule of thumb.  You must get to know your body over again and listen very carefully to what its saying in order to keep yourself from going over the edge.  Only by doing so can you improve your health for it's that constant pushing it past it's limits which cause you to stay so sick.  So, you must stop, slow down, rest lots, let the house be less than perfect for when you really evaluate it all, what is the perfect home if the wife is prostrate or even not there?!!   Your family NEEDS YOU and a you which is as healthy as can be.  Teens must have that constant sounding board and supervision.  I've got 3 of my own and my older two are now in their early 20s and living at home (which is normal and considered good here in Brazil) and they live their adult lives and things have settled down and much easier going but this is partially because my husband and I raised our kids to be responsible for themselves - their rooms, their laundry, buying their own necessities and clothes and even putting themselves through university.  As adults they pay their taxes, are on time for their work and are extremely responsible but this is because we began this when they were small children where they had to make their own beds by the time they were 2 (with help of course) and pick up their toys and fix their drawers and help with cleaning and dishes, etc.  Granted, it was always at their own age levels and abilities but they grew up knowing how to help even though I did the majority of the work.  Now, when I'm trashed, my daughter isn't home often due to her job, but if they can manage it, they will buy dinner (pizza) or they will do dishes or whatever knowing I'm unable to.   They know I will only ask when I'm needing it and if they see me pushing too hard, they'll fuss at me knowing that I will get sicker if I don't take it easy.


So, I know it's not easy and I know its hard to not grieve, but give yourself only just enough time to shed a tear or two but then buck up and get your attitude back in line and continue living life but only within the limits.   As you get better, you will see that it really is not a serious loss, but that of an ajustment and one for the better!!

I rather look at it like someone who is morbidly obese and must diet or die.  The changes in the lifestyle and habits seem like a punishment at first, but as the weight comes off and the person begins to see the very obvious benefits to these changes, the situation becomes easier and more positive and the improvements are such that the person wonders why they didnt' do it earlier and no longer considers it as a punishment to have to make those changes and sees that their prior behavior was an open threat to their lives!!

This should be our viewpoints!!


I hope this helps!

Lisa