Tuesday, 25 October 2011

1 Year anniversary of my "Window Re-Opening"

Crikey, I can't believe it's been a year since I decided to get myself together.

I have been pretty bad ALL year with my eating, but still managed to lose 11kgs. Practically every month saw a loss which is all I care about!

I know I could have done better, but I didn't.

Hundred of reasons, but the main one being I love wine and take away food too much.

A lot of my time these days I spend drinking nothing before midday (cos I am never up before then) and then drinking tea until about 2pm. Then I grab a couple of cuppa soups around 2-3pm - Mushroom and Chicken and veg being my faves -  and then dinner from 8pm onwards.

I say 8pm onwards because on Monday, Tuesday and Wednesday I don't get home until 10pm and at that time I have to then come in, clear up the carnage that no one else bothered to clear up and then finish off my work by updating my files etc before I forget. On a good day, I then have to have several cups of tea - usually a BIG pot - before I can feel the band freely letting fluid pass before I take a bite of whatever has been left for me. This is usually about 11pm. Then it takes me until 11:30 on a good day to eat the dinner. On a bad day it's gone midnight as sometimes the tea drinking doesnt start off too good.

On a bad day I can feel the first glurp of tea sit on my band. If I have it nice and hot it usually goes through and melts whatever gunk is in there although, there seems to be a critical temperature! If it's cold or luke warm then it will glerk. Then I stand between the kitchen and the living room snatching some TV while I constantly microwave and re microwave cups of tea until it starts to move.

I also should mention that it's not possible to sit down during the tea loading stage of my evening. I can only sit down once I can feel the fluid moving. I also have to be 'sans bras'. If, for instance, we are out for dinner, then I have to stand up to drink and eat. Food does not pass through my band if I have a bra on. Sucks to be me.

Anyway, back to a Bad Day - It is often the case that I have to spew the first 4 or 5 sips - and normally this produces a lot of bubbly spittle too which is obviously blocking everything up.  Then get a nice hot cuppa (38 seconds seems to be ideal!! LOL I wish I was joking!) and things start to roll.

I find the band is a constant battle to be honest.

Now I know what you are all thinking. TOO TIGHT!!!!!!!!!!!!

I'm sure I'm not.

Sometimes - rarely but not that rarely - I can eat anything. Drink goes without me noticing, food goes though. Sandwich, pizza, burger, roast dinner etc...

If I had fluid out, I could eat all day long and therefore I would put on weight. If I leave it like it is, hopefully as I lose weight it might get looser.

I am avoiding slider foods so thats at least a step forward from all the currys and stews I used to live on!

We shall see. If I try and behave myself a bit more things might improve. I am off on holiday 2 months today, so I have 8 weeks to be size 8. It's obviously a totally achievable goal! HA!

No, seriously though, I might make it to a size 20 before I go, that would be good and mean I can wear the swimming costume I wore to Sri Lanka which was lovely. I also didnt mind wearing a bikini at that size either, so I would be very glad to lose a couple of kgs before then.

So that's it. Same old crappy crap. But I'm still here. :)

Onto other things, as the lap band theme is getting lame.

My health is a serious cause of concern. You all know I have Cutaneous Lupus (and an off on relationship with SLE too), but I now have another couple of joys.

My foot pain that has stopped me going to the gym - initially diagnosed in June as a Morton's Neuroma - is still nowhere to being resloved. They are thinking that it is actually lupus attacking the nerves in something called a Mononuropathy - or as I like to put it - 1 sick nerve! I am going for Nerve Conduction Studies on Friday.

The reason for this is because:
When I saw the consultant physiotherapist in August, the said it could be 1 of 3 things
1.) Bad gait - needing orthotics (she didnt think likely)
2.) Lupus - Rheumatic involvement/Mononuritis ( she didnt think likely)
3.) Morton's Nuroma - (she thought most likely even though x-ray soft tissue was neg - the squeeze test was +ive)

She said she would talk to the Rheumatologists and ask whether there was any likelihood of Lupus involvement and then would either follow their advice, or - most likely - send me for an ultrasound and see if there was a Morton's Nuroma (small tumor) on the nerve and if there was - Orthopedics for surgery, if there wasn't - Orthopedics for Orthotic inserts.

She did a bucket load of blood work - like several arm fulls - and sent me on my sweet way.

After 2 weeks she rang me.

She told me that after looking at my blood work the Rheumatologist asked who I was seeing for my Lupus. She replied "No one." (Cos apparently I don't have it!!??!! dumb asses) He was shocked and said because I had APS (Antiphospholipid Syndrome) and SCLE (Subacute Cutaneous Lupus Erythametosus) I actually had SYSTEMIC Lupus Erythamatosis. (SLE)

You don't FREAKING say.

Now, I was diagnosed with that in 1998. I was under like the best people in the UK at St. Thomas's Hospital for ages. We moved house and when I had some complications I was then told by some junior Rheaumatologist in a backwater hospital that I didn't have it in 2002.

I actually burst into tears in front of her as I was so gutted. I had been Sterilised at 22yrs old and everything because it was imperative that I had no more children. I lost 6 little babies and my only Darling Beautiful Son survived because I would not terminate and was delivered healthy at 32 weeks by sunroof exit and me and he both nearly dead. We had a 10% chance of survival.

I had so much going wrong with me that I was even near coma at one stage.

So to be told I didn't have this evil thing - and I truly wanted to believe I didn't - meant I could have more kids and I was immediately thinking about sterilisation reversal, and that it would be done on the NHS as they had made a bad judgement and how many kids we could have - 6, 10 However many I could!

Thankfully we didn't go ahead with the reversal (and someone up there must have been looking out for me) because something just didnt sit right, we had gorgeous DS and I had been so terribly terribly ill and we just could not face that again.

And just as well because I was then told I DID have it again in 2004.

Then I was told I didn't again in just June THIS YEAR.

Lupus is the master of disguise and it seems that doctors know JACK about it. You actually have to have your own doctorate to get somewhere I swear!

I have ALWAYS considered myself to have SLE as I have a lot of symptoms etc and the thing often does not appear for the cameras on routine blood reports. So to be told I do have it - from the head Rheumatologist at Addenbrookes is a BIG deal.

I had been praying and praying for this to be sorted and finally things have come to a head.

This is something I have been fighting for to get recognised for a long time, so because Head honcho says I have SLE, they think that the pain is more likely to be from dysfunctional nerves as opposed to Morton's Nuroma (and the X-ray shows no evidence of a tumor either) and are therefore sending me for conduction studies where they send electric shocks up the nerves to see how well they work.

Tragically, all this was the first part of the call.

The other part of the call was to draw attention to my blood work. It shows that I am seriously deficient in Folate or Folic Acid. My serum Iron levels are also extremely low,  although I am not Iron deficient.

Now on the surface that is contradictory. How can I have low iron but not be iron deficient? Well it's to do with the folate. You need folic acid to produce red blood cells and lack of it causes the body to produce abnormally large red blood cells that cannot function properly.
The main symptoms of folate deficiency anaemia are:

lethargy (lack of energy)
heart palpitations
spoon nails

and others!

I had all the above and felt grim. The way my blood work looked I have low serum iron, normal iron available and low folate all indicating chronic illness.

The chronic illness? SLE.

So yeah, SLE is stopping me absorbing folic acid in my gut they now think.

This was all put on a nice letter to me after the phone call and it clearly went to my doc too. It said "please follow this problem up as a matter or urgency" on the letter. I figured they would call me to make an appointment.


I waited 2 weeks and went myself. I told the doctor that I had gotten the letter from the hospital regarding the floate/iron crap and I was worried. He was like
"hmm oh yes it's low"
I was like "......(really?????).....yes, so is it the SLE?"
"Oh do you have SLE confirmed now?"
"......(W T F'ing F????)... well.... that's what it says on the letter DOCTOR.
"right.. well I will give you some folic acid tablets. It could take 4 months to settle so come back in January"

Ooooooh Boy.

I feel like setting myself up as a doctor, I think I would at least GIVE A RATS!

Anyway, after sitting with the gormless prat for 5 minutes and wondering why he gets paid a shed load of money for ME to do his work, I took the scripts and I am now taking folic acid tablets and it will take 4 months to see if its making a difference. Which, by the way, I knew it would take before he told me. Sigh.

So, along with my Squameous cell metaplasia in my bladder - familiaraly called my 'pisston pain' I have folate deficiency anemia, SLE and a heap more drugs to take.

I am currently feeling worse than ever with sugar on top. My whole body hurts like I fell down a cliff and my foot pain is beyond hell.

I cannot wait until friday to get the nerve studies done and then I only have 4 more weeks to endure before I see the heamatologist/rhematologists.

Current Daily Drug chart:

Gabapentin 1000mg - 1g (4 tabs) - for Neuropathic pain
Hyroxychloroquine - 400mg (2 tabs) - For Lupus
Detrusitol - 400mg (1 tab) - For Piston Pain
Folic acid - 5g (1 tab) - for anemia

And as if things could not get worse - today my new lovely lodger who moved in 4 weeks ago after the grim plumers just handed her notice in as she lost her job last friday so is going home to Mum. Such a shame as she is so lovely and she fitted in sooo well into our little home.

So now we need a new lodger. Anyone want a room?

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