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Josies book of her experiences in the last 2 years . (Read 4989 times)
Josie
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Josies book of her experiences in the last 2 years .
04/02/11 at 06:46:44
 
Since December 2009 ( 18 months in ) , I have been writing a book about my experiences with my illness and my path to becoming disabled .

I thought I would start with my Dance of the specalists Wink This is lifted directly over . So this reflects where I was at in December 2009 .

The Dance of the specialists

The pace of investigations can be painfully , in my case literally ,  slow . I saw many specialists . The first round , in summer 08 , led to the conclusion of gastritis , but very little else and no explanation for the excessive nausea and fatigue and night sweats . In October , after being discharged from the medics with very few conclusions , my gp referred me to rheumatology due to the muscle pain . The rheumatologist did his work up , excluded everything and concluded I had fibromyalgia . This fitted in some ways but not in others .  

In November  ,my back and side pain was worsening and I was needing increasing pain killers . By this I mean , no sleep , rocking in pain .  This was concerning my GP so he referred me back to medicine and to neuro , to exclude MS and brain problems ( no not mad cow disease ) . The neuro Drs started their work in Feb. 08 . In early march , I went to see the medics but they didn’t feel there was any more work to do . This concerned me as they didn’t have the recant letter from my gp and my pain was so much worse and I hadn’t had my back or pelvis scanned at all  .

A week later Dave and I managed to get away to see my children but when we went onto Northampton I had to spend 3 days in bed with the pain , sweats and my walking was so painful . This led me to write a letter to the PALS department at the local hospital . Because I was living at the refuge I was between Gps . One had my notes but couldn’t treat me , the other could treat me but had no idea what was going on .I was concerned that no hospital consultant was taking responsibility for me and I felt the one I was referred to hadn’t given my detioration in condition any credence . I was also very worried that by this point I had had 5 reactions requiring adrenaline and the A&E staff were getting concerned that I hadn’t seen an allergist and that we couldn’t pin down what I was reacting to.

The lady from PALS was helpful . She contacted the consultant responsible re medical issues and advised me to ask my gp directly for referral to an allergist and gyne .
This was all in march

In April , as I have said I had 4 reactions . After the 4th I spent 3 weeks in hospital having investigations and getting stronger . The Drs had many thoughts about what may be wrong but the testing came out negative . The neurologists in particular took time to scan my back and pelvis to exclude any cancer in this area . It was all negative This was good . It also meant that we knew what I didn’t have which allowed me to begin to settle into being .

The conclusion to all these tests was a condition called fibromyalgia made worse by endometriosis  and allergies . Fibromyalgia is a pain condition in which your body feels pain and sends pain signals to your brain , when it is minimal , or not present .  This gives lots of connected problems . Shaking in arms and legs ,headaches ,  extreme fatigue , pain in chest and jaw , irritable bowel  syndrome  , headaches, and raynards disease where your fingers and legs  lose circulation . I have had most of these . Fibromyalgia is a diagnosis by exclusion so every other cause for the symptoms’ has to be excluded .
My time waiting for the neurology tests was interesting. For me  personally , MS or another long term progressive illness was more scary than a ( treatable ) cancer . I don’t know if your aware but the scariness of cancer is most dependant on where it is and how early its caught . So a nice early lymphoma to me was less scary than something that would be with me forever.  So its MRI brain day and im in the scanner . No music as they cant play it for head scans . It was at that moment it hit me . A huge sense of relief that we would find the answer , coupled seconds later with the “OH shit “, moment of they will find the answer .

Endometriosis is the growth of womb tissue in other places in the abdomen other than the womb. It then behaves the same each month , by building up then bleeding . Because it has no escape route it leads to extremely bad pain which needs strong pain killers to deal with .This also leads to scar tissue forming which affects the bowel and other abdominal organs . It can grow as far away as the diaphragm ( under the lungs ) . So the endometriosis was giving its own pain and  was irritating the fibromyalgia every month .  I wanted to kiss the gynaecologist when he said that he thinks I have this and he would like to plan an op to confirm and ( hopefully) treat it . So im on a waiting list .

The allergies became a major problem ………………………….  I have had 16 in total now with an A&E requiring reaction. These consist of rashes , intense itching , swollen face and mouth ,  sweating , shortness of breath and throat closing. They wipe the floor with me and each  irritates the fibromyalgia.  

I now get tired and my lips go blue and I get short of breath on more than 3-4 steps The reactions I am having now are being controlled by pills as emergency treatment on top of my normal meds. These reactions though are taking me through the same recovery process  as  before  .  But   my  recovery  point is now furniture walking  + wheelchair scooting on a good day . Wheelchair inside on a bad day pushed by someone else  , using a commode and having everything done for me .
This inculdes personal care .

So there it is , more offerings soon Wink

Endometriosis was later excluded . But at this point it was my explanation for my abdominal pain .

Josie
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DeborahW, Founder
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Re: Josies book of her experiences in the last 2 years .
Reply #1 - 04/05/11 at 09:29:25
 
Josie,

I finally got around to reading your chapter. Very interesting. I am looking forward to reading how you figured out to ingratiate mast cell disease. Have you written about that yet in your book?
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Feel well!
DeborahW, founder
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Josie
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Re: Josies book of her experiences in the last 2 years .
Reply #2 - 04/11/11 at 08:50:24
 
Hi all :-

This is my first 4 months of reactions and i i coped

During my admission in April . I finally let myself feel how scared I had been . So the fall out was immense . Think , 9 near death experiences in 4 months .  
I had been using very coping mechanism known to Josie- busy , joking , watching , thinking of everything -  to put off acqnodging how scared I was.  With my first reaction  I had  hoped , rather naively as I had had the full run of treatment - that it was a one off and I wouldn’t get so ill again  . Many thoughts. Like I have not had that wine before and it should have happened before now if it was serious . So I didn’t  allow myself to feel  how scared I had been . In all honesty I knew immediately I was in trouble . The bright red face was a dead give away !!!!! Think major instant sunburn . When my heart started banging away I knew . By banging away I do not mean a bit fast . I mean properly banging out of your chest , dizzy . On the journey up to the hospital my brother in law passed an ambulance and said - joking - do you want me to stop . I said no ,  I am ok , but get a move on . But once I had begun to settle after an injection , immediately I was laid down and hooked up to the monitors , My boyf was staring through the window at me . I asked the nurse to ask him to sit down as he was looking at me as if I was dying !!!!!!!!!!!! I had In fact been exactly that .
So I put the brave face on and quietly  watched out for sulphites and got tested  Again only because I felt I should.   It was later that month , when I had my first 2 adrenaline reaction , that I realised that this was with me forever and  I needed to be care full . I turned my fear over what had happened into caution over what I was eating . Again not really allowing myself to acqnolge that I had been very poorly  .
How can I adequately describe scared - it doesn’t feel an adequate enough word . Petrified , traumatised , anguished.
In February  came my first throat closing ( stridor) and apparently random reaction. We had a lovely evening our valentines meal was at a chippie . He gave me a stone he had carved for me and we bought each other the same card . At the end of the meal I itched and shook a little . I took some piriton .  I got back to the car . I settled . We the reversed out of the car park and it started. A whole body itching and wheeze you can not describe or do .  It was extremely scary not being able to convey anything to my partner being in the car and it happening in 2 mins max. When we stopped he called an ambulance . I used my epi pen . My throat was closing , he was out of the car directing the ambulance  - I was in a dark alley alone .My throat really closed now I was holding my throat . Couldn’t speak and could not breathe . Then I lost some time - passed out . I came to . Then a paramedic came to me .  I cant work out how long passed out for because of the effects.
This was the first time Dave had ever called an ambulance .
It was at this point I realised that we needed to see this as long term and something we needed to be confident in managing . I set about finding out more about sulphites and where I might have ingested them that evening . Again not really allowing myself to be scared.
In April , I had 4 . Maximum 7 days apart .  The second was on a visit to see my children , I had an anaphylaxis in the night in the pub we were staying in . It began with a mild wheeze and itching . I called NHS direct - who half way through the call heard my breathing change . Tight, wheezy , I was shaking and glazed . They put us through to the ambulance service .  It was very scary as the pub was out in the country and I didn’t know the postcode when he spoke to the  ambulance and where the nearest ambulance station was . How long would they be . Would they find us ??????? I made my way to near the fire exit then gave my epi pen . I was seriously struggling by now . The crew found me . I needed a second dose of adrenaline as I wheezed again , went blue on getting into the viechle . I was breathing all the oxygen and my arms were blue . This event has made us realise how unpredictable reactions could be. Im still not entirely sure what caused it .
So I  set about Dave learning how to use the EPI pen and getting more confident at what he needed to say on the phone to the ambulance. So I could concentrate on giving myself the EPIPEN and getting near an exit .
It was only when we got to reaction 4 in April and  I  acqnolged the long term threat to me posed by the allergies that it really hit me how close I had been to dying on at least 2 occasions. At first I backed off from my partner as I felt I couldn’t be a good girlfriend. I seemed to be stressing him out all the time and I couldn’t help him with his stuff as I was so randomly poorly all the time . Just when I felt like things were ok . I would  have another reaction.

Jose
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