Changes...

I havent written in a while.. thats not because stuff hasnt been happening.. its because stuff has been happening but i havent been ready to tell the world..

Everyone knows i have fibromyalgia.. everyone knows i have hypermobility syndrome.. but not everyone knows that i am big.. as in very big.. this is a mixture of several things.. steroids... not having correct portion size for a large portion of my life (over the age of 16) due to stress factors.. and also in the last few years being unable to exercise.

For the last 18 months i saw dieticians and was eating correctly but was unable to lose weight.. eating two wheatabix in the morning, cupasoup at lunch time and a cooked tea time. We dont have crisps or cakes or biscuits in the house so i never snacked.. but yet my weight still crept up it was in the end detirmied to be lack of excercise was the reason for this.. as i am on crutches and a wheelchair and only able to stand with crutches for about 1-2 minutes at a time so ten mile hikes are out of the question!

Just before christmas after much desicion making we.. (being me and my fiance) decided that i wanted to go for a gastric band as that would help me lose weight.. I saw my General Doctor and she filled in the paperwork and in febuary i had a appointment at the local hospital baratric centre. I saw about 8 doctors, shrinks etc who knowing more about the subject than me told me that a gastric band would not be a good idea as gastric bands are better for people who are able to a) exercise and b) are over-eaters. So a gastric Bypass it was! I was due to have the operation in May but in the Pre Op it was found that i had MRSA and it took alot of testing, medicating and too-ing and throwing before i was " most people still think it was a mix up as i had to have three MRSA swabs, the first two were clear and the last one came back infected which is pretty bizarre surely all of them would have been.. oh well there was no arguing with them and had to go through all the treatment!

In July after all the all clears came back i went for another Pre-Op i hadnt actually gotten my hopes up that the operation was going to go ahead because of the screw ups previously but the tests came back clear and i am due to have my operation on the 11th of August 2011. At the moment i am on a carbahydrate free diet, i started last thursday it is suppost to help you lose weight before the operation and also to shrink your liver to make it easier and cause less complications during surgery.

I am not that nervous at the moment i am hoping it is going to help with alot of things, that it might make my asthma a bit better, it might help with my sleep apnea although it is possible that the sleep apnea is due to fibromyalgia or it being hereditary as several members of my family have it and not just being due to being overweight. Losing alot of weight is also going to help with my legs.. well i am hoping so i may find it easier to walk.. i may not.. i am not naive.. i dont expect the operation to cure everything and to be able to jump and dance.. i have had fibromyalgia quite a few years now and i was born with hypermobility i am still going to be screwed up.. even if it helps my legs a bit.. my hands.. arms.. back..feet.. migrains.. twisted shins etc are all still going to be there.. I am looking forward to losing weight and not having people stare at me.. blaming my weight for all my problems.. i am not stupid i know people do.

I had some of my medications changed today at my General Doctors as my stomach wont be able to process some of them.. and i will require daily vitamins as i may not be able to absorb them as easily..

I know the next few months is not going to be easy.. maybe eating for the rest of my life is not going to be easy.. for at least four weeks after the operation i am on "babyfood" style food.. then on food with some substance.. by christmas i might be able to eat properally but from then on only child sized portions.. but it will be worth it to be "normal"

I have the rhemotologist on thursday so will have to see if he makes any changes to anything.. wednesday is my birthday.. and on the no carb diet i am not allowed cake.. lol sucky.. oh well it will be worth it! I will just have to tell myself that!!

I haven't written in ages.. not much has been going on to be honest..

My toe.. on my right foot the one that was totally removed back in September/October time has started being a pain.. its been growing spurs apparently. I am going to have to have them removed surgically. Great! just what i need.

I had a bit of fun with carers back about a month ago. My regular carer which i have via an agency through "social service assisted direct payments" left.. Now Social Social service assisted means basically that i don't have to pay for my carers.. some people have to.. it is means tested, they look at how much money you earn.. how much savings you have etc and work out if you can contribute towards it. I don't and cant pay towards mine. Assisted means that i don't deal with the finances.. Basically everyone is assessed and given an amount of money depending on what their needs are and then they can choose if they want to deal with the money and hire someone there-selves or whether they want Social Services to deal with the money and have an agency. Well when my carer left, the agency told me they didn't have anyone who i could have per-mentally, eg every day so i would have to have random people wash and dress me etc.. i didn't like the idea of this so i thought about dealing with the finances myself.. as a few people i know do.. but then the agency heard i was planning to leave them and magically found someone! I had alot of concerns about dealing with it all myself for example what happens if you hire someone and they call in sick. At the moment with an agency if my carer is sick i just get someone else..it is all alot of hassle! So i have a new carer.. she is very nice and very good at her job :)

I am having an operation soon, i went for a pre operation assessment about a month and a half ago and had to have some tests.. one being for MRSA and they apparently found i have (had) it i had three swabs, the first two came back negative for it, the last one came back positive for it. Everyone.. my Doctor included said that its pretty impossible and chances are it is a false positive.. however i still had to have the treatment.. covered in pink goo daily and nasal cream.. yum yum.. i have had three clear swabs now so i am waiting for my general doctor to write to the hospital to re-refer me so hopefully i can have the operation soon!

I have been having alot of problems with my left hand recently.. I have always had tingling in both hands with the neuropathy and hypermobility.. both thumbs mostly numb.. well both little fingers went numb a while ago.. however my little finger on my left hand feels really odd.. the numbness has travelled down my hand to my wrist and across to my middle finger.. so four out of five fingers are numb.. with the little finger being the worst.. i have a really odd sensation from my little finger to my wrist.. like the skin and muscle is too tight and i cant move it properaly.. like my finger is being held in an odd position.. its hard to explain.

I haven't written recently.. alot of things are either up in the air so i dont know what is going to happen so there is no point in happening or not much is going on.

There are to be changes in DLA changing to some new benefit. People are to be moved from Incapacity to ESA Benefit with many people moved onto Jobseekers Allowance which is going to cause alot of problems for many. I am just sitting and waiting for my form telling me that it is time for me to change over. Even social Services Funding is stopping for anyone of middle or lower care needs! i have phoned Social Services and checked luckily.. or not.. i checked with them and i am higher needs so phew.

I awaiting the future of the Daycentre i regularly attend as its future hangs in the balance unsure whether it is going to to be kept as it is, closed down.. or turned into a place for the elderly..

As i said there is little to write with everything hanging in the balance.

My vitamin D is still not getting any better; i have to make an appointment to see the nurse to have an injection of Vitamin D. Surely it cant keep getting worse and worse forever its going to hit rock bottom at some point i suppose.. lol maybe it will go into negative figures!!

The injection I had for pain the cortisone one from my specialist in November didn't seem to work I have still been suffering alot from the pain in my leg and the trapped nerve, I have another appointment with him in March where hopefully he will be able to come up with some ideas, I don't know whether he did the injection in the wrong place or whether it didn't work.. it was only the second time I had it!

It is the Fibromyalgia meeting tonight which I am looking forward too, it was the awareness meeting last month and we had a "healthy" number of people I made a new friend and I am hoping he is going to come tonight he is in a similar position with his Fibromyalgia as me. Most people at the group are still walking easily or working.. my new friend has what I call "severe" Fibromyalgia and has to use a wheelchair very often and can not walk very much. I feel a little bit bad, feeling happy that there is someone else like me.. i know that sounds weird.