I have written a book about my expereinces .This is on a sister site -

 

 

I have pondered how to write this and have decided on a time line from my first becoming ill to current .

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Authors Symptoms as lived

18th of August 2008

 

I was exhuasted and felt unwell .

 

Went to the doctor who checked my urine with a dip stick -showed protien so ? urine infection -so gave me antibiotics .

 

I went to bed , had drenching sweats, and became short of breath on minimal activity and my legs were weak on stairs meaning I had to take one stair at a time holding on to a bannister .

 

Monday back to GP, thought ? chest infection -so changed my antibiotics .

 

Next week -No better - struggled to walk vvvvv slowly to the GP , did heart trace -showed change - so went o hospital , no conclusion , ? chest infection 2 more weeks of antibiotics .Home the next day

 

Week later more short of breath and lower back and side pain - went to GP sent to hospital -remained for 2 weeks .

Week 1 - excluded heart infection .

Legs began feeling burning hot in the evenings , temperture every evening

Week 2 -began retching +++ , exhuasted after meals . Because of pain on upper right side by liver ? gall stones .

has Ultrasound of abdomen -gall bladder big - Thought gall bladder inflammation -My response seems fair- Im not fair but Im fat and nearly 40

Saw Surgeon -NO, all is well

Sent home friday -On antisickness . With breathing masks called nebulisers . (see medications )

 

Sunday- had been in bed staurday, slept all day, hot day, minimal fluids -sweats ,

 

10pm -began shaking all over head moving by itself and arms . had sugar as ? low blood sugar .Ambulance- went in given fluids , drip paracatamol and diazepam . Was re admitted .has episodes all week .

Had camera down into stomach -inflammation only -No hpylori done

CT neg- apart from -lung changes and an enlarged lymph node in my arm pit .

On antisickness via drip all week . But NOT metrocopamide

Friday-more fluid in my pump than was put in there -sent home to get over my gastritis

Heart infections

Endocarditis

 

Shows with night sweats -drenching , short of breath on exertion without a chest infection . High temperture

 

Test- blood clutures-blood grown in the lab to see if bugs are present .A scan of the heart - called an ECHO - to see if bug "vegetations "on the valves in the heart.

 

Treatment 6 weeks of intravenous-into a drip antibiotics and possible repair if valve is damaged

Gall Bladder

Can be inflammed or have stones in the body or tubes .

 

Causes pain +++ on the upper right of tummy , radiating around into back , white poo , Jaundie -going yellow feeling sick-  called cholecystitis

Scan of abdomen with an ultrasound .

Common in ladies - fair ,fat and nearly 40

 

Treatment -

ERCP -which goes in under xray and removes stones in the tube and puts astent in to keep tube open or

If the gallbladder has loads of stones or the body of it is inflammed - a gall bladder removal witha cmara in the belly button and 2 little hols for inplimets -uusally day procedure -Cholecystectomy

H pylori is the bug which causes stomach ulcers .

 

It can be checked for with cameras into the stomach-endoscopy or with a breath test after taking a sepecfic medication .

 

Treated with tripple therapy of 2 antibiotics and an acid reducer Normally a PPI ( see mediations )

 

H Pylori has been connected ,in several studies internationally, to heridatory angiodeama

H-PYLORI

Stress causes Mast Cell Activation

Discovered Since - Metroclopamide reduces histamine breakdown

Paracetamol -prostoglandins ,

Cyclizine -histamine and

Serotonin

In the months before I got ill . I had high stress on many levels .

1) Job- i was job hunting attending 6 interviews . I got the job on the wednesday and ill on friday. They hold the job for 3 months

2) Money-due to job situation . I took a job in Mc Donalds .

3) My children ,I was in hospital and missed a visit due to being in hopsital.Which upset me hugely

4) My car had to go off road because of not enough money for insurance

Paracetamol stops prostoglandins being made - which cause muscle shaking and airway restriction .

 

Cyclizine is an antihistamine - used for antisickness .Look at histamine symptoms

 

Serotonin - causes shakes ,serotonin syndrome

September-October-November 08

So through September I took my treatments for the stomach - a acid reducer -Omperazole and antisickness -cyclizine .

I found I was feeling exhausted after meals .

I would have days were I could do a little then sit down . My legs were getting weaker. I had constant right hand side of stomach and lower back pain . Other days I wouldn't move , was absolutely fatigued and exhaused, I had never felt like this before .

I had a salad at a cafe with salad cream and walking back vvvv slowly I was short of breath and dizzy .

In October I saw the chest doctors in clinic and explained my pain was getting worse . I was till short of breath and my walking was so agonizingly slow .I was getting no sleep because i had 30mins were i could possibly manage to every 4 hours of pain relif cover .It took an hour to work and began wearing off at 2 hrs . My GP was concenred about sarcoidosis .I had raised level of ACE, which is made in the lymph nodes in the lungs were sarcoid builds up .

I was discharged .

I had dinner with my Mum and the wine made my face flush and swell a little .

 

My GP referred me to rhumatology as he knew there was something .

In Novemeber I had sinistis which made the left side of my face numb

December

Friday - 5th

 

I was out all day and missed lunch . About 6 I had some Pizza, garlic bread and wine . My face went bright red and burning , also my chest, arms and back . i was pacing a bit for no reason . Then my heart was banging -like fast +++++ out of my chest .Then i went dizzy. This passed and I asked to be taken to A&E. My face swelled . As i went accross the recptionts window she buzzed for help and I was taken into resus -the top serious treatment room in A&e .I was connected up to the heart monitor by 5 leads with little sticky patches . It was beeping -180 beats . They gave me an epipen -well A&E eqivelent . Which has more adrenlaine in .

they puta plastic thing in my arm and gave me fluids, antihistamine -piriton and steriods -hydrocortisone .I also had some oxygen and nebulisers .

 

I was in there for 3 hours .They then moved me and watched for another couple of hours.the treatement worked 100% .I went home .

 

I was fine over the weekend. Most stauarday, slept some of sunday .

 

On monday I saw the rhumatologist . the steriods reduced my pain .i was on them for 5 days after . he thought probabaly fibromyagai.I wasn't convinced and why the anaphylaxis ? he did loads of tests .

 

The 12th - i went othe GP because I was in unbearable pain. he started anew medication and saw how bad my pain was he thought-this is more than fibro-maybe ones of those funny syndromes set off by alochol

 

The 16th - I saw the rhumatology nurse and told her about the new bad pain and she said - its fibro =hmmmmm

 

I had some reactions on boxing day .

 

27th -anaphylaxis 2

I had driven to my partners parents and had a nice lunch . At 6pm I had some juice -hijuice . then half an hour later had a magners . Immediately my mouth itched and I flushed , my heart went fast and my chest wheezed . An ambulance was called and I gave myself my first EPIPEN . The ambulance came and I began wheezing again to a squeeky noise coming from my throat -so they gave me more adrenlaine . they have me anti histamines and 2 nebulaisers . Off to hospital .

I met a nurse called Clive who I never met before but had dreamed about 2 nights before.

I had some steriods and remained until 3 am .

I slept until lunchtime . At 3pm I was feeling itchy and my chest was getting tight So I went with hubby to get my steriods as I had a prescription . I had dose streight away .This relived the chest tightness and itching .I kept up my antihistamines every 4 hrs . During dinner I felt hot ++ and my hands were so sweaty I was dropping my fork , but i got through it. it was yummy .

 

I had small reactions 30th, 31st . Anti histamines worked

 

No alochol for me

 

 

 

An empty stomach

and Alcohol

I have noticed I react quickly when my stomach is empty . Most if I have missed a meal .

 

This is a known "fact "with alochol consumption .

 

Alochol and Mast cell .

50% of mast cell patients don't tolerate alochol . many do tolerate it then one day it chnages .For me, my alcohol tolerence is NIL .In anything-inc creama and lotions and potions, medical treatments, skin swabs in hospital, alochol skin clensing gel-just close to me not matter touching me , make up, personal care products.

 

Sulphites acommon trigger and a big one for me are made more potent as triggers whn coupled with alochol . Wine anc cider are high sulpite.Pizza's and garlic breads have sulphite ingredients .

 

High histamine ingredients - were cheese , wine, cider .Ingredients with mast cell activating possibilities are tomatoes

Pain - daily and in an event

Pain was feature of my illness from the outset.In my sides - flanks - which made my cry when the tecnician did my ultrasound of my abdomen and was pressing over my liver and kidneys . i had pain which was more than 7/10 for nearly a year ;-( i was beyond exhausted .

 

The back pain and my legs being weak made me walk beyond slow . Think old ladies overtaking me on zimmers, tutting as they pass .

 

Abdominal anaphylaxis is a real thing - youll see more of the reactions going to my abdomen as we go through .

 

Pain discussed in more detail in medications second page

Fatigue and daily symptoms

The fatigue was one of my early symptoms . It fluctuated , has never gone away but was often were I couldnt hold my head up or my mobile phone .

 

I now know histamine , serotonin and IL1 mess with sleep patterns and histamine cuases low blood pressure . So the fatigue is not a surprise . It remins and continues to fluctuate but my antihistamines have taken away a huge amount . i ran out of my best antihistamine and i was out of it, dizzy for amorning until more was delivered .

EPIPEN and

Hospital /Paramedic doses

Epinepherine /Adrenline is availble as EPIPEN's for home use and in prefilled syringes in hospitals and glass vials to be drawn up for paramedics .

 

Its strength is 1mg/1000 mcg per ml

In epipens

Children have 150mcg - 0.15 ml

Adults over 30kg - 0.30

The doses permitted are

Children

0.15 up to 0.3 per dose dependnat upon child size

 

Adults

Hospital doses are 0.5ml (500mcg )

Paramedics can give 0.15- 1ml ( 150-1000 mcg)

in multiple doses  

 

My first dose was ahospital dose of 0.5ml/500mcg and this worked perfectly .

 

My second dose was an epipen - 0.3ml -300mcg , but I needed a second dose .

 

Most anaphylaxis needs at least 2 doses .the epipen level has been decided what is best for home admisnstration, but is far below amaximum dose but will hold the person until they have medical help.

 

EPIPEN's are now prescribed in packs of 2 because of this .

epinephrine-injection images (18) Epipen

January -Febuary  2009

Janaury 3rd - I had the morning after pill . I also needed thrush treatment because I was given antibiotics with my second anaphylaxis .

 

Through the day I was itching and a bit wheezy as the antihistamines wore off . At 8pm , I was itchy and had had 2 doses of antihistmine - piriton. But was still rough so I went to A&E. they gave me a nebuliser . I spent some time retching which meant it went south .

 

Jan 4th -5th

Again through the day I was itchy feeling unwell , wheezy. I woke at midnight itchy , lips big. had some anti-histamine .Went back of to sleep . then i woke at 3 hot, flushed and wheezy.i had nebulaiser and woke my sister. Then my throat went itchy and my voice dropped . I had an epipen and went off to A&E.

 

I had also had a huge amount of stress the day before and over christmas . Family finances .

 

 

 

On the 8th I moved house suddenly . Domestic violence .

 

The next day i went to my appointment with the neurology doctors . they ordered a few test an appointment with an eye doctor and an MRI of my brain -scary .

After I went to housing and they found me a place to go - I moved to a refuge. I had various random reactions , possibly to cleaning products .

 

14th Febuaury

On valentines day.i had stressful phone call from my mum . We then went and had a fish and chip supper . With vinegar and A fizzy drink xxxx During the pudding I felt all hot and unwell , a bit shaky.  I had some piriton . On the way out I felt dizzy but walked very slowly to the car . When I got in I needed my inhaler . Then as we drew out of the alley we were parked in , My throat swelled up suddenly I couldnt talk or breathe -my throat was makinga swquueking noise .

It was so scary, he pulled over and called an ambulance . he got out to direct them. We were parked just at the top of adrive but it was dark. I used my epipen and passed out for a while. The paramedic bought me round . Soooo scary .

 

I was given some oxygen and taken to hospital there they treated me with antihistamine and steriods . By 11:30 I was ok and went home . I slept for 2 days .

 

I had random reactions through the next month . A horrendous migranine -dark room time . A day with such unbearable pain I was taken to the doctors by the staff  - abdomen again, both sides-stabbing, cramping in the middle and on the upper right so I couldn't take even a shallow breath without wincing ;-( .The lower back pain was constant and still messing with me. I was also having my leg dragging when I walked more than 20yrs . The evening tempertures and night sweats all continued .

 

I know I needed different pain killers but the option was strong ++ ones and thats would mean I wouldnt return to work, which I still hoped I would xx So I continued and was referred to the pain team . We were working with the idea of fibromyalgia but my first GP didnt think it was the case . The pain was constant . I still find it hard to explain it , to put it into words .

Hormones ,Alcohol and corn flour

The morning after pill didn't register as the cause of this for many months . Until I found a group of others like me and I was told hormones are a major trigger - Ding - penny dropped.

 

Now I know horomones directly activate mast cells ,through the month and at period time . Around my pregnancies I was unwell at times of horomone shift .

 

I thought it was the alcohol in the thrush pessery treatments and the cream.

 

Alochol is an issue -absorbed slowly it will give me symptoms . Slow burn .

 

Since I have found corn flour to be a problem , which also gives a constant level of symptoms- bowel - rethching , coughing , diarrhoea, pain in the badomen from bwoel muscle spasms and airway - muscle spasms of the muscles around the airway tubes - narrowing them causing wheezing on breathing out.

The squeeking Noise

The squeeking noise - is called a stridor . It  because the throat is swollen inside , so that air struggles to get throat and it just keeps on swelling up .

 

There are some examples on you tube. i can't make the noise now . I will always hope I won't ever again . But I know it may.

 

This has a wheeze with it you can hear accross the room . I know its starting if I have an itch in my throat were I can't get to it . By were men have the adams apple . I also feel my chest tightening, can't take a breath to fill my chest. I may be coughing or double or triple swollowing saliva . My voice will drop - call it my sally sexworker voice .

 

Then it becomes a wheeze only I can hear and goes from there . With me breathing faster and then not being able to speak in whole sentances .

 

I am smurf bird at this point - blue . I am having many other serious symptoms as well . Dizziness, fast heart , desperately thirsty suddenly , angry-confussed , flushed ++++, sense of doom .

 

I epipen when my voice drops and if I do i can avoid passing out /BP drop- dizzy, fast heart

 

March 2009

In march the reactions continued . Small ones to begin .On the 18th I had a really good day, saw a freind who I hadnt seen for years . Met my sister -in -law for subway ;-) I had my tea bout 9pm , cleaned up after ( used cleaner ) , emptied tumble drier . Then I suddenly felt very hot and wheezy . I went up to my room and grabbed my inhaler and went by the office .

 

As I got down there my chest was wheezy were others could hear it and my throat was itching. i used my inhaler and had a piriton tablet . My mouth and lips and face were itchy . I was flushed +++ Then I couldn't talk and an amabulance was called , I used my EPIPEN and waited for it to work .

 

10 mintues later it worked and my throat settled . The throat squeeky noise was happening by then . My breathing rate 40 .

 

I was worried about being OK as I was due to go and see the kids the next day .

 

The epipen worked really well .In A&E they gave me a nebulaiser and steriods and I got home .

 

Over the next week ,I had amoment every day were I felt unwell, flushed ,BP dropped .One was in boots and I went very muddled and I think the lady thought I was going to go down .

 

After the kids we went to see hubbies freinds . I was a mess. In bed all day, drenching sweats again. Horrible pain in my back , making me walk slowly holding onto stuff . Those I was staying with were so worried about me . id had enough . i spent one 2 hr period I was out of bed writing to PALs - patients advice and liason service at my local hospital .

 

I was between gp's my old one had my notes but  couldnt treat me -and the new one could treat me but had no idea what was going on .the week before I had been back to see the doctor who discharged me in october who didnt have my GP lettter. He did nothing -zilch-discharged me  .  So I was now getting iller and iller with no hospital consultant having me in his care . The neuro was testing but not keeping on top of me .

 

I spent a night in a cat house and was itchy but got away with it. I think because of being on steriods .

Again - what this time ?

Insert body text here ...

Conflicting advice

I had the same paramedic the last 2 times .this time -when he got there I could talk -He said that if I overused my epipen it wouldn't work properly .

 

This scared me 100% .So I made a mental note to only use it when I thought i really needed it .

 

Youll know more of what happened after ina moment.It took me  until june to ask another paramedic if it was true-ITs NOT . EPIPENs -epinpeherine works well while its in your body but is very safe and doesnt leave symptoms behind. This was such a relief .

 

EPIPENs are used in hospital when BP is 90/50 or below .At home we MUST NOT wait . Our symptoms profgress at different rate and you will know if you are feeling unwell -trust your instinct xxx

 

Symptoms of low blood pressure - swelling , dizziness, lightheaded , passing out /or nearly , fast heart beat .

 

Being your own health advocate

So your ill and getting iller and NO doctor is taking responsibility for you .

 

All hospitals have patient liason . GP's have complaints procedure through their management structure.

 

I wrote a detailed account of my symptoms and what (lack of ) action I had had . I had response which was -she would discuss me with the consultant and told me to ask my GP for a referal to an allergist- as I had had 6 anaphylaxis by this point. And more dialy reactions than I cared to count. i was also very concerned about my back pain as I hadnt had any pelvic scanning .So she told me to insist on being reffered to GYNE .Which I did .

 

We are all entitled to an second opinion . If you aren't happy with the care you are getting .

You can -

1) Ask for a second opinion on a specific issue

2) See a different GP

3) Contact the surgery manager

4) Change GP

5) Contact the GP managers

 

If your struggling with this please contact me.

 

True Allergies

After my first anaphylaxis i was tested for allergies .

 

True allergy happens when you meet something your body thinks is bad and it makes antibdies to it .These are attached to mast cells . Then when you meet the allergen again - it joins with the IGE-antibody-which makes mast cells split open and splill contnets .the amount of IGE present for that allergen decides how serious the reaction is .

 

Normal IGE is less than 0.35

 

My total was 188 -over 100 is anaphylaxis level

 

for cats it was 20, house dust 12 and grass 5

 

So no rolling in the hay sniffing cats for me -but this didnt explain my anaphylaxis . In summer 08 I had 1 cat and 8 kittens in my bedroom. 27th of decmeber hubby had been hugging thier cat at home . I had 2 of my own cats . My freind I visited in march had a cat .

 

I rehomed my cats with my kids ( with their dad ) so they stayed in the family but I wasnt at risk .

 

 

 

 

 

 

 

 

April and May 2009

April 6th

I picked up my cats to take them to my children in Bristol. I kept my meds high, because of my cat allergy .

 

April 8th

 

I had dinner with gravy - half an hour later I got itchy mouth, tounge, pallete and face . I got a taxi to A&E. My face was swollen and my pulse high.

 

I went into resus and was given antihistamines and steriods into a plastic thing in hand.  It was hard to get in . My JVP was up- pressure in your vein going up to my head . The doctor didnt know why .

 

I stayed 4 hours and was then discharged . With a week of steriods

 

April 13th

I took the cats to bristol and had to clean them up in their box of the way and my throat tightened a bit xx making my squeeking sound

 

April 14th -Itchy at bedtime but settled down

 

April 15th/16th -11pm I was itchy and a bit wheezy after leftover of spag bol . We went to bed at 12ish.I had had avery long day and felt like I had pushed myself too far .i got wheezy again and had more piriton and my inhaler. At 12:30 we called NHS direct -to ask advice on steriods.I has just reduced my dose to 20mg that day .

 

While I was on the phone , my breathing changed and I went dizzy and incredibly itchy .

I made my way to the exit. With me getting dizzy and my breathing getting faster then the squeeky noise starting .

I sat down and glazed, gave my epipen . I missed some time .

The NHS direct lady put us through to the ambulance - we didnt know the postcode - we found it .

 

The paramedics arrived got in a plasic thing - gave me steriods and got me out to the ambulance . My breathing - my throat had reduced in swelling inside . I walked down the steps and got into the ambulance . My breathing went again- fast and tight . They gave me more adrenaline . i was sucking the oxygen dry-called air hungry ( kessmel breathing ) with fast very deep breathing . I was grey I could see my arms were grey . theydrove quickly and I went to freinds A&E .

 

My boyfreind stayed behind because he wasnt safe to drive .

 

I was ok, abit itchy -until 6am ,when my lips itched again when they gave me some antihistamines into my arm and that settled me. I slept apart from the doctor being there . He suggested Mastocytosis as a cause .

 

I was discharged at lunchtime, slept for 3 hrs then hubby bought me home to Sussex, cutting my time with the kids short ;-( .

I was shaky and could only stand for a very short time, was going pale and sweaty .

 

21st -another medium at home, didnt need an epipen but was feeling unwell tablets did the trick .

 

22nd - I continued , every 4 hrs flushing but at 9pm I went bright red, itchy, fast heart and dizzy .I had meds and called an amabulance.they took me in .I had loads of bruises . I had steriods and antihistamines at 11pm .This settled me down. At 2am my pulse went up to 160 and my breathing went tight and very very fast.  i was ina side room and had to bang my phone on the trolley to get attention . I had nebulaiser which helped abit. the senior doctor came and said have an epipen , so they put me on a heart monitor and I gave it myself .This worked .

 

I had an anethatist come to see me -Intensive care doctor . he was happy with me . When I passed urine -it had sugar and protien in it . My blood test for sugar was normal. So it seems my kidneys let out protiens when I have had an anaphylaxis .its logical because there are blood vessels in the kidneys and these become porus letting through white blood cells and plasma-protien .

 

I was sent home at 10am .

 

I rang hubby and waited for him.he took an hour and ahalf.I had saved hima nights sleep by not ringing to say i was in .

Went home to bed

hubby was ina mood because he hadnt had a coffee.This wasnt recieved well by me . When we pulled up at mine.I said if you are going to sort out your attitude you can come in otherwise you can explative explative. he sorted himeslf out.This was the culmination of me going to hsopital alone when we were away and that when we got back he went to a planned event for 3 days leaving me alone .

 

24th

I had breakfast at 1pm . As soon has I had 3 mouthfulls I flushed, itched , swelled and my heart went fast, breathing fast and my throat went to the squeek.I opened the front door as i knew very quickly, called an ambulance -and used my epipen . When they arrived it had worked .I had oxygen ,went to the ambulance - had piriton IV and steriods into my hand.

 

20 mins into resus I needed more adrenline . An hour later a nebuliser of adrenlaine. At 5pm more antisickness and antihistamines as i was itchy and feeling sick .

 

On thw ard round they suggested apheocryocythoma as my cause and the doctor wanted to see me in clinic  after discharge .For a test, heart monitor for 24 hours and blood pressure 24 hour machine

 

At 11pm -more steriods .3am more antihistamine .At 5am my pulse went up to 180 , chest went and my throat went. the doctor thought I was panicing until he listened to my chest then I has 2 nebulisers and I settled down .

 

I tried to sleep but at 7am breakfast arrived . I am tuned into medical convos.I used my phone to blot them out. By 5pm I was exhuasted but couldnt sleep .

 

They moved me to a gyne ward , nice and quiet . Abt 11pm I was itchy and my breathing was jiddery ,my tounge and mouth were itchy inside .

 

I was moved to a medical ward were they were better placed to help with my situation.

 

I had regular nebulisers for a few days . They tested me for all sorts . Neuro Doctors thought ? myloma - bone cancer . So i was scanned head and back .my walking remained very slow and painful and wobbly . I felt drunk sometimes as well, like I did often xx They checked for causes of anaphylaxis - thyroid low -which is caused by hashimotos thyroiditis -inflammation due to you making antibodies to a thyroid chemical .

 

Over the next 3 weeks ..............

 

I was weaned off steriods and was bursting into tears for no reason. They checked my cortisol and it was non exiatant and they then did atest called short snachten and my adrenals didnt respond . But they didnt do the timing right . 2 weeks passed and they checked again and my adrenals had begun working. No test was done to see if I made enough in stress but i was seen as being ok .

 

They were testing me for a pheo but they used the wrong bottle for the wee

 

So, the PALs lady was checking up on things - that I was unhappy that I didnt have a consultanat . She came on the ward and said Consulatant 1 didnt feel i needed further investigation -when consultanat 2 was throwing everything at me .

 

I had CT of my pelvis as well and abdomen again . After I went flushed and itchy and meds worked

 

My pain was continuious .they treid 2 stronger pain killers but in week 3 called the apin nurse- I cried when i saw her -relief .they selected oxycodone for me and I had it. i slept that night and woke up, not in excurciating pain ;-) Some in my lower back but noting like it was .

 

I went home 3 weeks later none the wiser but with a referral to a London doctor .

Personal life -things outside of medicine

So all my stuff was in storage , I was having a hard time with hubby.

 

Money wise I had my benfit of £80 a week. I had to pay towards my rent .£10 aweek , I applied for disability living allowence -which is anon work related disability benefit .   It takes 12 weeks from application .

While I was in hospital I was turned down for this benefit . I couldnt reapply for 3 months .

 

I had also applied for a community care grant -which is to help people get settled on moving out of adifficult situation to get settled. I applied and this also was turned down . This meant that I couldn't get my stuff out of storage .

I had no coooker , fridge , carpets . All I wanted was to get my home sorted so I could see my kids .

 

When I got home I had a housing support officer who helped me geta tax rebate -from working at mcdonalds,  a mother & baby hostel and bank nursing. he also helped me apply for some grants which were the cruical help I needed .

 

This money paid for a cooker ,fridge , rugs , furniture .All the things I needed .

 

Without him I dont know how I would have coped because I was having one "good" day a week which =sitting on the sofa . It was late june before I felt recovered from the April run of events .

 

Whilst I was in hospital i split with my boyf, final straw moment.i was being investigated for cnacer and he didnt come in on the day of chloes birthday and was asking me for money to park . he had said he would take any work but was waiting for boss he hadnt had work from in 6 months. I jsut couldn't deal with his stuff and mine .

 

Some I came home form hospital to an empty flat.

 

Air hungry -Shock

In shock you body has 2 stages -compensated and complete shock .

 

Download has a description of shock .

 

The body needs to keep blood acid level very level . This is known a PH . It goes for 1-7. 1is acid and 7 is alkeline .

 

In shock or other illness your body builds up acid in muscles - from working without oxygen , high staomch acid (esp in mast cell ) bacteria and virus activity.

 

When blood becomes acid the body has ways to make it more alkeline . One of these is to breathe fast- this builds up carcbondioxide- which makes the lungs have more bicarbonate-which is alkeline .

 

So breathing fast and deep is not about needing oxygen -its about needing air . The person will suck the oxygen dry . Oxygen masks have a bag on -this will be sucked empty .

 

This is also known as kessmul breathing- which in diabetics is a sign the they are very unwell .

 

When diabetics get poorly -they have no insulin to get suagr into cells (even though there is lots in the blood ) - so the cells think there is none so begins breakdown of fat - this break down - causes ketones - which are acid - this when it reaches a set point - is a medical emergency called

diabetic ketoacidosis . So kessmul breathing is an attempt by the body to sort out how acid the blood is .

 

PH below 7.2 leads to rpotiens called enzymes which are involved in all processes not to work .

 

Type 1 diabetics test for ketones .

 

A patient like this would need intensive care.

Leftovers and triggers

Stress and changing routine

It is well documented stress causes mast cell activity .

 

At this time I had now moved into my new home but had all my stuff in storage -apart from some basic bits . I wasn't communicating with my siater, her husband (domeastic violence) my dad . i was talking to my mum but was seriously struggling with things .

 

Changing routine hit me hard -

It has in febuaury after suddenly moving . Now in  April chnage of routine again hit me. Late nights , eating different foods a different envirionment ,with possible triggers .

So I had leftovers .............. cooked that day . At lunchtime ,eaten at 11pm .

There were other factors I wan't aware of -

-Corn oil

-Cheese

-Cleaning materials

-Bed linen stored with paint tins -vloitile organic compounds .

-Tomatoes

Those I was -

-Cats

-reaction the previous week

 

So no huge surprise I reacted

Snowball reactions and recovering

Mast cells opening causes more to open and mast cells to be more sensitive to triggers (either establised or new ) .

So weekly or less epipens and daily serious symptoms =snowball.the aim of treatment is no symptoms - but relaistically 1 anaphylaxis year .

 

Recovering from a shock. I have a day awake per dose of adrenlaine (epipen) or anyway if its near epipen .

 

Then 2-3 days sleeping (per epipen )

a day sweating it out

a day passing the fluid

Then the emotion hits

then I get back to normal

After mast cells open -they take 2-5 days to re seal .This is why steriods are given for 3-5 days . I keep my general meds level high as well

June and July 2009

I lasted until early June . then I had a freind over and had pork pie and salad and melon for pudding .

 

I felt unwell 20mins after and had some piriton and painkillers . 30mins later I went-itchy, fast heart, fast breathing throat closing -my freind called the ambulance and I used my epipen.I had waitied though because of what I was told . I had some oxygen and went to hospital and had the works . I thought melon - so avoided that .I  had found about oral pollen syndrome -in triggers which is connected to my grass and pollen allergy.

 

In the morning -after ilttle sleep I had a busy day -Gyne - about my pelvic pain and abdominal pain.

 

I was disachrged at 9am -went for an ultrasound of my pelvis -ata sister hsopital - then went home and got changed out of hospital treated clothes -then went back to the site of hospital 1 to the private unit-as thats were I was seeing the doctor .i told him the scan was ? poly cystic overies . He said well.I think you have endometriosis - so I was happy about this as it would explain my pain in my back and abdomen . he said I would need a procedure to look inside and treat it.

 

At least a possibility of improvement in my pain and condition generally -8-12 week wait.

 

I had an appointment for St Marys in London .

 

I got back with my boyfreind .

 

On the 15th i had some opcorn and there was work going on in my boyfreinds shared house .i went in felt horrible-went upstairs had popcorn and piriton .then rejoined him, felt anxious .then my chest got tight.I went and got my epipens and got downstairs , telling him to call an ambulance - i used my pen -by then I was wheezy and the squuek was back.i was itchy ,flaushed and swelling as well .

 

The pen worked in 10 mins,When the parameidcs arrived they checked my oxygen and it was low -90 % .in a weell person its 96-100% . So they took me off.I had anebulaiser in the van as i got wheezy again .

i was in A&E about 30minutes and i felt vvvv hot, my arms went red and i wanted ti lie down. They gave me anther dose of adrenaline (epipen ) .I had 4 trying to get a line in a nurse/doc on each arm and leg . I was scared .

 

It worked and I settled down with meds into a baby cannula-plastic thing in my hand . Which they put meds in and some fluid ina drip.  I spent overnight in the ward by A&E .

 

I woke and didnt know the nurses name , so i rang the call bell . The nurse said I could shout out nurse-but i will never ever do that. A nursing thing . I had a wee and settled down to sleep . Again it had protien in it .

 

The time flew in resus. My boyf said he was waiting for 2 hours .

First hint of geltine as a trigger

The pork pie was the culprit .i didnt make this connection for some time .

 

Gelatine was the ingredient which was a problem .

 

At this point I thought sulphites were my only trigger.I had found out (after ) that the animal skins are soaked in sulphites -bringing the link .

 

I thought my second reaction was purely popcorn . recently i found out how reactive I am to apin fumes from gloss paint and to building dust particularly of old paint and deep wall drilling -which recnetly had me very very close to an epipen -

 

I walked through past work, went vauge , then ashen then flushed ,itchy ,fast heart. Another 2 minutes and i would have needed an epipen . the door was closed and covered and fans were put on to blow dust away.

 

Which helped.

Not scared anymore

So the paramedics were worried that i waited to use my epipen . So i told them waht I had been told and I was sacred to overuse it .They reassured me and said to trust my body and use it .

I have since found that using it when I know I need to and it makes me better quicker .In the moment and over the next few days.

Doctor day

June 18th 2009

 

I traveled to london across London to St Marys hospital . I saw a consulatant in allergy . i didnt bring my results-has assumed the GP put them in . He had no notes - from my A&E. Said I couldn't be allergic to sulphites and what did I think had set me off .

 

I treid to not have my lunchtime antihsiatmine -so some of the tests could be done -but i was itching and flushed in victoria train station .So i had some. they took blood for test they can do on anti-histamines . I was releived as I was scared of reacting during testing.

 

He prescribed fenoexidine - telfast ( Allegra US ) once a day. I was to return in a month . He also gave me a steriod regeiemn to use for reactions

 

I had also seen gyne and so I asked about how safe a general anesthetic was . His response- don't tell them otherwise they won't do it -hmmmm

 

I asked if my children would get this -he said no . its not genetic .

 

Preparing for my appointment

I took details of all of my reactions inc the one from the friday before . I find it hard to remember exactly what had happened ( due to histamine ) . So i sent myself text messages -for march when I was bought a new phone on contract.

 

I wanted to have them printed out but didnt have time and hoped he could look at them-on a memory stick he wouldnt.

 

The stress of the appointment - made me itchy and anxious. I got upset in the appointment. I was still hoping to go back to work .

 

I thought i could reclaim my travel money - I could but I didnt have the right form .this made things very hard . As the trip cost £80 - a weeks money .It came back in time but it was hard week .

 

Train up for 2 hrs then taxi across London and back again

 

Endometriosis

August & September 2009

In August I was reacting most days.not to epipen level but still enough to document .

On the 8th i had unbearable stomach pain and swelling. i had a pain in my shoulder tip which is a sign of stomach problems .

 

So went to A&E .Because of the gyne opinion it was endometriosis, I was moved to the gyne ward at 6pm . I was examained ina clinical room but werent convinced it was gyne . Within 5 minutes of the examintion finnishing I felt jiddery and dizzy .Then hot and flushed and itchy. I came out of the room and spoke to the nurses . Had piriton then 5 minutes later steriods as it was progressing quickly . I got on the bed and had some oxygen.

 

In 10 mins the meds began to work . 20 minutes later the steriods began working and my breathing slowed down. I kept the oxygen on and went to sleep. I next woke up at 10pm . I was moved to a surgical ward .

 

On tuesday they scanned my stomach, when he pressed on my liver it was so painful i was crying, horrid . The ultrasonographer asked if I had had surgery on my liver -No i haven't

 

That evening they crossed off mysecond dose of fenofexidine and i didnt have any .About 10pm I got itchy and red ,so was given 30mg of steriods .This settled me down after an hour or so .

 

13th - the day things changed in my life .

15;30 -I was taken down to a CT scan , I assumed they had seen something on the scan . I had my cannula chnaged and was given the contrast .The scan scanned and i was bought out and i was instantly itchy.i was given some piriton but quickly was struggling, breathing fast and wheezy and itching. i was taken back to the ward. had my epipen and steriods . This worked but 30 mins later I went again and had second epipen this settled me down .

 

i had my tes at 6pm and put salad cream on .

 

8pm I went off agin my thorat cloed couldn't breathe

8:30  - again

9pm -  again

10 pm again

10.30 -again -all epipenned -so 7 doses + steriods, antihistamine and finally diazepam to shut down the stress which was perpetuating the reaction .

 

i slept until morning .

 

So on the friday i went home .

 

On the ist of spetember my boyf had to go away for work . So i was alone . i wasnt coping .On the 8th i had another anaphylaxis and ended up in overnight . the doctor asked -how are you coping-i said.im not .i applied for disability befit in july and now rang social services because i needed help . 9see big chnage for the english system  .

 

On the 16th -my freind took me to bristol for 6 days were I stayed with another freind . I got back on the 19th and went and stayed atafreinds house because I needed care . i wasnt safe to be alone .

 

After 2 weeks I jsut wanted to be home , so i went and "coped"

 

 

At 9:30pm they said they were going to take me to high dependnacy.this is part of intensive care but were your not ona life support machine / braething machine .

 

i was ok with this as i was getting tried with everything that was happening in my body .

 

An hour later I settled and the intensive care doctor - anethatist said to keep me on the ward ,but still be watched closely and he visited me regualrly through the night .

 

Scared-hell yeah.but mainly because i was feeling so ehxuasted. not because I didnt want to go to HDU .

My boyfreind was with me in the arly part of the reaction . when he went i gave him instaruations incase I ended up going to intensive care .My children live with their dad and I wanted him to inform their stepmum if I nee him to .

 

but later I was alone .my boyfreind had to have medication at night and this meant that i asked the nurses to say i was ok.

 

then I had a moment-scared.i rang his parents -because i didnt have mine and then relaised I wanted my dad

 

i wasnt talking to my family -but that night -I wanted my dad and my siater.the staff called my dad and he came in the next day .

 

Day 2 post my dad was in the hospital with my neice and nephew as my small neice was in special care .i wanted to see the elder one and asked if that could happen .as soon as i hung up i wanted to see my sister and that happened .

 

It can take something like this to focus your mind .

Family

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