Been away for a bit, lots to tell, most of it boring me stuff.

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Date Joined Feb 2007
Total Posts : 1050
   Posted 6/23/2007 8:14 AM (GMT -6)   
about a week ago my router fried in a nice little electrical storm we had. Everything in the house was surge protected, except my wireless router. That was plugged into the wall next to the phone socket. After about 10 power surges in a row, I went to hide out on the stairs (no windows and slightly muffled sound). When he storm had gone away, came back to my computer, found out internet had gone. My router only had a couple of lights on, reset it and still only a couple of lights.
Got a new router now, free through an internet provider. Were paying less a month for usage and run on 3gb rather than 1. SO slightly faster internet:)
Before last week I'd not been feeling too great. I was covered in spots, Erythema Nodosum, which are red, painful to touch and hurt when I move, they also leave me with bruises. 2 weeks ago I got told I had these because of an nfection, so they were going to have to work harder to keep my chest under control. They gave me a 2 week course of Ciprofloxacin and sent me home.
I finish my 2 week course on Monday and still feeling no better. Phoned the hospital yesterday to tell them this, and my normal doctor and consultant, who have obviously not even glanced at my notes, phoned me back later in the afternoon, to tell me that I have asthma and that I should start using a blue inhalor (Salbutamol). They were very shocked to hear, infact far too shocked for my liking, that I've been diagnosed asthmatic for over 5 years now, and was using inhalors before then. What made my day though, was that they told me that I should start a steroid inhalor. Something I've told this 2 professionals about 50 times now, I will not go on long term steroids as I'm not very good with keeping taking them.
Best bit of that is, they actually listened to me about this over a month ago and started me on a green inhalor (Serevent.)
Anyway, I'm confused and annoyed as I've been told by one Consultant that these spots are down to infection, which should be treated aggresively. Then my Doctor and other Consultant, from the same CF team have told me I don't have an infection (even though I've been colonized with Psuedomonas for god knows how long, and I'm growing Staph Aureas again.) it's just my asthma playing up. Even though I'm using 4-6 puffs of Salbutamol about 3-4 times a day now, and it's not doing much good. I still have something that's stopping me taking a full breath in, leaving me breathless, and I'm tired and sore from these spots.
Whatever though, there getting a call on Monday, going down the asthma route, I still have no answer to these spots, and I want one as no painkillers will ease it, and I'm sick of looking like I've been in a wrestling ring with Tracey Smother's.
On another unrelated CF topic. Physio's are mean. My physio and Consultants and Doctor of my CF team, keep trying to take my crutches away after a letter from my neurologist saying I didn't realy need them. So, 2 weeks ago they were all doing there best, each member of staff, coming in to try prise away my crutches. I stuck to my guns though as they may say they will weaken me if I continue using them out of the house. But, as I pointed out several thousand times, they weren't taking them away, as without them I just wouldn't leave the house, which would make me even weaker than using the crutches anyway.
Annnnnyway, an Occupational Therapist came out to see me after that, she was really nice, and helped work out where I was really struggling around the house. She's got me a swing contraption for my kettle, so I don't drop the kettle on weak days, and still can have a cuppa. As it was on weak days, I was having a fun time of playing dropsies with absolutely anything I picked up. I don't have the strength to grasp things properly, so I'd just been avoiding hot drinks on those days, as I didn't even want to imagine me dropping the kettle, trying to make a drink.
She brought me a board and seat for the bath, so I can have a bath without having to call for paul to help me out, as my muscles go all tense after a bath, and I physically can't lift myself out.
She also got me a banister for the stairs, which is actually helping a lot with my breathlessness, as it's less effort to try get upstairs now, I can pull myself up, and I've not fell while trying to climb the stairs since getting the banister, as I can balance myself better.
Best of all though, was she got me a physio, one who's used to working with people with neurological problems. She was able to find where I was having problems straight away, just by doing a couple of normal movements while layed on the floor.
Someone who actualy believe's and can see that I've had ths problem since childhood. It's such a nice change to have someone believe me, rather than forcing me to do things I can't.
I got told I shouldn't have gone out without my crutches. I'd gone out for a drink with my mate, and because of my CF physio's comments, I went out with no crutches to try to proe to myself that I didn't need them. It was a stupid idea though. I ended up not moving from the sofa for 3 days, as I went all weak and limp and in SO much pain. Usually I'd have Nefopam (pain killer) and would only have to worry about spot pain, which hurts but, I can still do normal tasks with. But until I finish Ciprofloxacin, I can't have them, as it could cause fits.
In one way though I feel better because I know now what I am capable of, which will make it a lot easier to ignore my CF team when they start trying to talk me out of crutches again. And my neuro physio is giving me some excercise's, just really tiny ones like tightening my stomach muscles 5 x in a row. To try to regain some of the normal mobility that I've lost.
Oh, and diagnosis for the Muscular Dystrophy thing, I should be getting in 4 days. I was told I should have expected results 6 weeks after my muscle biopsy in Febuary. So hopefully, they have the answers this time.
That's al from planet Gem anyway.
Hope everyone is keeping well
Huge hugs all round
Co-moderator in the: Cystic Fibrosis Forums
 Woe to the child which when kissed on the forehead tastes salty. She is bewitched and soon must die.
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Tobi nebuliser, Serevent, Salbutamol, Sertraline, Odansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Omeprazole.
Had a Port-a-cath fitted on chest wall since 11th Nov 05

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