Re: Re: rash/Becky

[Guest guest]

Hi ,

Thanks for your message :-). I have read all your messages and it sounds like you've had a very tough year. I hope you are getting over the worst of it now.

I remember when I had a terrible year with this disease, someone (I can't remember who) said "there is always some-one worse off than you" (they said it in a nagging kind of way - it was probably my mum). I found it very hard to register that comment, and tried to imagine it, but I had no spare energy to feel compassion for that poor person (whoever they were!). I repeated that comment to my best friend at the time - she is a very caring person, and she said to me "it isn't relevant at the moment if there is someone worse off than you. You are what matters and I want you to concentrate you energy on coping with this and trying to get better". When I am very unwell it gives me no consolation to think there are worse off people than me. That comment is often said to make you feel guilty about "feeling sorry for yourself" or whatever. If we are unwell we need all the love and compassion and nurturing we can get. If no-one can/will do that for us then we have to do it for

ourselves. This is one of the things I refer to when I have talked about "inner strength" and so on.

Sorry to rant on about all this, but I just think you (and all of us) deserve better than the "there must be someone worse off than you" comment!!

Lots of love,

Becky xps just think of the rest of us blowing our noses and scratching ourselves silly and have a giggle!!!

<stevens_sc@...> wrote:

Hi Becky,I think most everyone on the list can relate in some way. This disease isn't a walk in the park but I keep reminding myself that there is always someone worse off than I am. ))Itch like the dickens, they do!! Definitely an imbalance of some type or we wouldn't be having this. - New Mexico> Hi ,> I can really relate to your hives descrition, mine are very similar, but lucky for me, I do get a bit of a break. I have to say that i'm not sure prednisolone is the cause of my rash - i prefer your explaination about our bodies having a condition which puts things "out of balance".> I really do feel for you because the hives are unbearably itchy sometimes, aren't they?> Thanks

for your input,> Becky x

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[Guest guest]

Wow Trudy,

there are a lot of interesting points you have made. Firstly, how old were you when you first had Samters? It sounds like you were really quite young. I was in my 29th year and the doctors at the time told me I didn't fit the standard profile as I wasn't a middle-aged man! Judging by the people in this group a lot of younger women of childbearing age get it too.

It sounds as if people have made some fairly inane comments to you to try to make you "feel better". I have always been very wary of the view of a God who wanted to try us like this. I can't believe in a God who is anything but pure, wonderous LOVE.

I have often wondered why I have this illness, but my brothers don't (yet), my next door neighbours don't and my friends all don't have it either. Ok, so it is quite rare. I wonder what it is in all of us that make us have it. Do we have similar genetics? Personalities? Karma? Makes you think! Is it because we react in the same way to lifes trials and tribulations. Why does it appear early in some peoples lives and later in others? I have been told by my Consultant that there are some people who completely recover from it, never to be troubled again. HOW? WHY? I know one could ask the the same questions of any "dis-ease".

Becky x

ps. are you really a zoo keeper?

Trudy <iamthezookeeper@...> wrote:

Becky, you are right. People like to placate others when they themselves are uncomfortable and don't know what to say. I find it interesting they don't say things like: "There are always people better off than you" when you are doing well...lol. When I was younger and diagnosed with Samters I was a very sick girl. I spent most of my time in the hospital or on the couch. People would come over and say things like "God must love you to test you like this". I thought well...does he hate me when he is not testing me?! And if this is love I don't want it. I reached a point where so many people said God wouldn't give me more than I could bear, and it is a blessing from him, that I ended up telling "HIM" to stay away from me for quite awhile. I have since learnd "HE" doesn't have anything to do with this. Some people are sick, some

healthy, some rich, some poor, some enslaved, some free...that is life. Some people say if you have faith you will be healed. Well in my opinion...true faith is the kind that excepts both outcomes...if you don't get healed that is the answer too. Trudy.> > Hi ,> > I can really relate to your hives descrition, mine are very > similar, but lucky for me, I do get a bit of a break. I have to say > that i'm not sure prednisolone is the cause of my rash - i prefer > your explaination about our bodies having a condition which puts

> things "out of balance".> > I really do feel for you because the hives are unbearably itchy > sometimes, aren't they?> > Thanks for your input,> > Becky x> > > > > >

[Guest guest]

,

Thanks for this info - I don't seem to fit the mold (but that's typical of me!).

I can remember the start of mine - we had a very tough weekend whereby my husband and I had decided to redecorate our bedroom before a new carpet was laid. Also, unbeknown to us this would happen, our 2 young children (3yr old + baby) both came down with chicken pox and were very poorly with raised temps etc. We had a nightmare weekend with a lot of stress and almost no sleep. A few days later I developed terrible rhinitis which I thought was a cold except it went on and on and on. Then loss of smell and taste, permanently awful sinusitis and asthma (new to me) etc you must know the rest. I had already had chickenpox (twice) as a child - does anyone think this could have been some sort of trigger, or coincidence? Previous to this I had been pretty healthy with no known health problems or allergies.

Anyway, it doesn't really matter how it started. Does anyone else remember the start of theirs?Becky x <stevensnm@...> wrote:

Becky,I have found several references to the classical view of a Samterite1. female, middle-aged and going through the change2. middle-aged male3. female, 15-16 of age and it starts with an infection or virus4. babies around 6 months but not diagnosed till older Mine is # 3 but I was also given hormones at the same time and they can actually trace back my symptoms to when I was younger than 15-NM> Wow Trudy,> there are a lot of interesting points you have made. Firstly, how old were you when you first had Samters? It sounds like you were really quite young. I was in my 29th year and the doctors at the time told me I didn't fit the standard profile as I wasn't a middle-aged man! Judging by the people in

this group a lot of younger women of childbearing age get it too.

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[Guest guest]

Trudy, I had a feeling that you were referring to your 6 children! I feel like a zookeeper with my 3 sometimes! I really am very impressed that you have managed to have and raise a large family with this disorder - a huge credit to you. I have had 3 miscarriages but they were all before Samters. Also, with my first two children I had pre-eclampsia and had to stay in hospital to be monitored. They were both born a bit early. When I announced to my family and friends that I was pregnant with my 3rd child everyone thought I was totally mad to do it with my previous history and then Samters on top - luckily it went very well and as far as the baby was concerned it was my healthiest pregnancy! So, it can be done.

I'll try to find the photo of you, I haven't figured my way around the web yet!

Becky xTrudy <iamthezookeeper@...> wrote:

Becky, I got this when I was 23 and now am 46. That seemed quite young to me to be so sick. Especially trying to raise a family. I was diagnosed right away so I might be one of the "luckier" (??) ones as my specialists were well aware of what it was and how to treat it. I did have a few years with touch and go treatment, resulting in a miscarrage, respiratory arrest, zero quality of life, suicidal thoughts, and depression. That was at the lowest point of this disorder. I too wonder just what component we all have in common and hope it will be found along with better treatments soon. As for the "iamthezookeeper"....I have six children and that seems like a zoo to me at times! They are my saving grace in this life...they have kept me alive and sane in all this. My pic is in the photos of the group with Dallas...my youngest.

Trudy.> Wow Trudy,> there are a lot of interesting points you have made. Firstly, how old were you when you first had Samters? It sounds like you were really quite young. I was in my 29th year and the doctors at the time told me I didn't fit the standard profile as I wasn't a middle-aged man! Judging by the people in this group a lot of younger women of childbearing age get it too. > It sounds as if people have made some fairly inane comments to you to try to make you "feel better". I have always been very wary of the view of a God who wanted to try us like this. I can't believe in a God who is anything but pure, wonderous LOVE. > I have often wondered why I have this illness, but my brothers don't (yet), my next door neighbours don't and my friends all don't have it either. Ok, so it is quite rare. I wonder what it is in all

of us that make us have it. Do we have similar genetics? Personalities? Karma? Makes you think! Is it because we react in the same way to lifes trials and tribulations. Why does it appear early in some peoples lives and later in others? I have been told by my Consultant that there are some people who completely recover from it, never to be troubled again. HOW? WHY? I know one could ask the the same questions of any "dis-ease".> Becky x> ps. are you really a zoo keeper?>

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[Guest guest]

God, what a nightmare. It often results in a crisis sometime, doesn't it. In my first year before I was properly diagnosed, I had 3 emergency visits to hospital in an ambulance, all due to massive asthma attacks from taking aspirin to help cope with sinus pain. I never had asthma as a child and was very reluctant to accept I had it. Uncontrolled asthma can be so frightening - luckily we know what causes ours.

Becky

ps, I live in Somerset, England, UKTrudy <iamthezookeeper@...> wrote:

Oh yes. I was eight months pregnant. I had NEVER been sick a day in my life. I had never even had an aspirin up until that point! I had a massive sinus infection that was treated with antibiotics for two weeks. After that cleared I kept hearing this "pinging" sound in my throat. I went to my parents in Michigan while my husband was in flight school...(I lived in Kodiak, Alaska) to have my daughter. A month after she was born I couldn't stop coughing, to the point I couldn't breathe. I asked my mom to watch my daughter while I drove to ER (NOT A GOOD IDEA). By the time I got there I was stopping to cough until I vomited. Dragged myself into ER and they immediately took me to a room, gave me EPI, put an IV in with prednisone and kept me a week. Said I had asthma and sent me home to a pulmonologist in Seattle. OH, I had been using

that OTC inhaler for tightness...Primatene Mist before this...could have been the problem heh? Trudy. > ,> Thanks for this info - I don't seem to fit the mold (but that's typical of me!).> I can remember the start of mine - we had a very tough weekend whereby my husband and I had decided to redecorate our bedroom before a new carpet was laid. Also, unbeknown to us this would happen, our 2 young children (3yr old + baby) both came down with chicken pox and were very poorly with raised temps etc. We had a nightmare weekend with a lot of stress and almost no sleep. A few days later I developed terrible rhinitis which I thought was a cold except it went on and on and on. Then loss of smell and taste, permanently awful sinusitis and asthma (new to me) etc you must know the rest. I had already had chickenpox (twice) as a

child - does anyone think this could have been some sort of trigger, or coincidence? Previous to this I had been pretty healthy with no known health problems or allergies.> Anyway, it doesn't really matter how it started. Does anyone else remember the start of theirs?> Becky x

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