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sara akhtar
10-14-2008, 10:07 AM
Hi all, I am awaiting diagnosis for my 'illness' and don't know what it is yet - maybe Lupus or maybe Myositis. Does anyone recognise these sypmtoms please:
Mouth ulcers and painful hand rash for a month or so then went (almost - tips of fingers still have painful red dots) also had headache at that time and felt generally ill. Next had muscle spasms in back which made me shout out in pain - very bad at night.Now, three months on, have muscle pain in legs and back sometimes arms and always in left base of thumb - very painful! Chest xray shows partially collapsed right lung. Tend to get worse as the day wears on and very very tired and feeling a bit fed up.

Ring any bells with anyone?
I know you can't diagnose for me but would like to gather info if I can before going back to rheumatologist.[/list]

rob
10-14-2008, 10:47 AM
Hi Sara,

Some of your symptoms do ring a bell with me. I was diagnosed with Lupus in 2004. The mouth ulcers, rash, headache, and muscle spasms are symptoms I deal with constantly. The general feeling of being ill, is something I deal with every day as well. As for the lung problems, that's not a symptom or a subject I have any experience with personally.

Lupus is notoriously hard to diagnose, and there are many other diseases which have many of the same symptoms. Lupus is often referred to as "The Great Imitator". You are doing the right thing by preparing for your next rheumotologist appt. An informed patient is much better at articulating their symptoms to the rheumotologist than someone who's in the dark about the subject.

Please, make yourself at home, and welcome to the group.

Rob

sara akhtar
10-14-2008, 10:53 AM
Thanks Rob, I've also posted on a myositis forum too so that I can gather as much info as poss from people who know the most about it. Starting to look like a hyperchondriac aren't I? Daren't post anywhere else in case this all turns out to be a storm in a tea cup - they'll be locking me up :roll:

rob
10-14-2008, 11:09 AM
Hey there Sara,

First and foremost, you do not sound like a hypochondriac to me. And if anyone tries to tell you that you are, IGNORE them. I hope that what's happening to you is indeed "a storm in a teacup", none of us want to see another person diagnosed with Lupus, or any other disease. But that does not change the fact that you are having real symptoms. Those real symptoms have a real cause, and you need answers.

I was told that I was a hypochondriac. Yet, I knew there was something happening to my body that was not right. You believe that there is something "not quite right" with your health, and you deserve answers. If there is something wrong, then you need to know what it is in order to treat and manage it. Trust your instincts. As far as being "locked up", it's not going to happen here. And you do not have to have Lupus to post here and talk. This place is about living with Lupus, but it's also about determining what the problem is. Many of our members still do not have a definite diagnosis. You need to know that you can talk to people here and not worry about being told it's all in your head. We have some amazing people here with loads of info, and understanding. I'm glad you are here.

Rob

sara akhtar
10-14-2008, 11:17 AM
That's made me feel surprisingly emotional Rob - thanks so much for that. I know you are right - I do need to sort this out. I already have hypothyroidism so I guess I know that there is a chance that I may have Lupus too but I really really don't want to have it. I want to wake up tomorrow and feel 'normal'. I have managed to be in work every day so far and I'm determined to keep things as normal as possible for the sake of my two daughters - I don't think I have symptoms any where near as horrid as lots of people on here thank goodness. You are all so brave I think it's incredible. If I am diagnosed with Lupus I am going to be very shocked but I'm going to try and make some lifestyle changes to enable me to live as full a life as I have always done. Let's wait and see - I just need to know what I'm up against. Thanks again Rob. :D

KathyW1958
10-14-2008, 11:23 AM
Hi Sara,
Welcome to the forum. I am glad that you found this site. There are a lot of us with Lupus and like Rob said there are some still waiting on a definite diagnosis. Lupus is a really hard illness to get a diagnosis for, because like Rob said, it mimicks so many other things. I can not tell you how many times the doctors treated me like I was a Hypochondriack. Like you I knew there was something terribly wrong. I hope that you get some answers as to what is happening with you soon.

Hugs,
Kathy

sara akhtar
10-14-2008, 11:28 AM
Thanks Kathy I'm glad I found my way here too. Going to feel a complete fraud though if it turns out to be something else - I know you all won't mind though so thanks for being here. What a great job you are all doing - lots of people must be very scared when they first get sick and don't know where to turn. So well done to all of you.

rob
10-14-2008, 11:31 AM
You are very welcome Sara. When I was trying to get a diagnosis, I had not a single person to talk to. I went through the whole diagnosis, and the fear that goes with it, all alone. I would have given anything to have an understanding person listen to me. I hope no-one else ever has to go through this alone like I did. Some of our other members should be along shortly to say hello. Make yourself at home, and let us know what you find out.

Rob

KathyW1958
10-14-2008, 12:53 PM
Hi Sara,
If you find out that it is not Lupus, please do not feel like you are a fraud. I am serious. I hope that you don't have this illness and even if it does turn out that you do not have it you are still welcome to post here at any time.

Hugs,
Kathy

sara akhtar
10-14-2008, 01:08 PM
Thanks Kathy, in the meantime I think I'm going to start thinking about diet and exercise to get myself in as good a shape as possible to face what might be to come. Having repeat chest xray tomorrow (no lung pain until I was told about the collapse :wink: ) and MRI scan on my thigh muscles next Wednesday - the Rheumatologist sent me for blood work so when I go back to see him in 3 MONTHS (way tooooo long) I might have some answers. Then electric current through needles into thighs and then muscle biopsy on thigh yuk all sounds horrid - hope something comes up in the blood work then maybe he'll cancel the rest and save the NHS some money :lol: Well one has to stay optomisitic :)

sits_inthe_corner
10-14-2008, 02:19 PM
Welcome sara

I'm in limbo for a diagnosis.

You are right on the money about improving your health now. You will be able to handle thing better if you keep yourself in as top form as you can.

Remember not to over do it though :lol:

Glad you found us :)

sara akhtar
10-15-2008, 08:28 AM
Thanks, I'll try and remember that - though I'm sure you know how it feels when on occassions you don't feel so bad so you try and squeeze in as much living as you can before you the inevitable crash! I guess I haven't been sick for long enough to have learnt my lesson yet :roll: Had a full day at work and off to Uni now to work on my MA - don't know how the heck I will drive myself home if the leg pains kick in hahaha guess I'll worry about that later :roll: Hope that's not a portrait of you in your profile pick or I'm extremelly worried what the future holds for me :lol:

sits_inthe_corner
10-15-2008, 12:06 PM
LOL sara,

Actually it is! Stupid medications make me froth at the mouth, but oh heck what's a girl to do! :lol:

And trust me...no matter how long you've been dealing with these issues you still cant resist to Seize the day when you're having a good one and push it a wee bit too far just cause the opportunity is there. :lol:

sara akhtar
10-15-2008, 12:45 PM
Hey look I've been promoted from 'Newbie' to 'Not So Newbie' :lol: Don't know your name - can't keep thinking of you as frothy mouth - what do you like to be called?

sits_inthe_corner
10-15-2008, 12:59 PM
LOL

You can call me sits or susan, which ever strikes your fancy.

The pic is a character called Hammy from the movie over the hedge. He makes me smile.

rob
10-15-2008, 01:02 PM
Hey look I've been promoted from 'Newbie' to 'Not So Newbie' :lol: Don't know your name - can't keep thinking of you as frothy mouth - what do you like to be called?

Yes, you have been officially promoted to the rank of "Not So Newbie, 1st Class" with all the responsibilities, and priviledges the title carries.

Sharp Salute

BTW, it's good to see you not only participating in the serious stuff here, but also in the not so serious stuff too. A little laughter goes a long way!

sara akhtar
10-15-2008, 01:29 PM
Yes I agree laughter is a good tonic. No doubt there will be some tears to come in the future but hey that's then and this is now. I believe in making the most of things - I feel so very sad when I read how poorly some people are feeling on here. I have had down days but I thank my lucky stars that I'm better off than lots of others. Hopefully when I have got to grips with this whole damn situation I will be able to be of some support to others just as you have been to me.

Well Susan and Rob I'm off to get my beauty sleep (don't want to end up looking like Susan's pic now do I?). Night night God bless. Chat again soon. xx

sara akhtar
10-15-2008, 01:34 PM
*Holy Censor, Batman* where did that come from ???? did I do that???

sara akhtar
10-15-2008, 01:36 PM
Oh my word - now I'm called Sea Monkey hahahaha what's happpening???? Help!!!

rob
10-15-2008, 01:52 PM
*Holy Censor, Batman* where did that come from ???? did I do that???

Oh, that. That's the automated censor program that the site uses to screen out any "colorful" words. It will insert funny little phrases in place of various four letter words. Don't worry about it. We all trip the censor from time to time. And the funny titles you see under your name are automatic too. I posted my 400'th comment a couple of days ago, and now I'm a "Rabid Pitbull". The site owner and admin have a great sense of humor, and the titles are pretty funny.

sara akhtar
10-15-2008, 01:58 PM
hahahaha the funny thing is there wasn't a word there at all lol - that's all I typed 'whole situation' :D How strange - somebody is trying to make me more interesting than I am hahaha!

sara akhtar
10-15-2008, 02:00 PM
oh yesssss i remember there was it began with d and ended in n - i cant believe that was censored :shock:

sorry folks
xx

sits_inthe_corner
10-15-2008, 02:18 PM
:lol:

Sara you're a breath of fresh air, I bet you hear that a lot!

Rest well.

rob
10-15-2008, 02:19 PM
Sara

It's goofy sometimes. It will pick up on some fairly common words from time to time and censor them. Other times some mild cuss words get through. Anyway, no apology is needed. The program runs on it's own without any actual human input, And it screws up once in awhile. I don't want you to think that it's personal or you are being somehow singled out because you are not. It's just a computer progam that gets confused sometimes. I'm a moderator here and it accidentally censors me too from time to time. No biggie, don't worry about it Sara.

sara akhtar
10-15-2008, 02:22 PM
Goodnight friends - I'll try to breath fresh healing air on you all :)

xx

sara akhtar
10-15-2008, 09:22 PM
5am and I don't feel good at all. Had a very painful and swollen thumb in the night in the base. The veins in my wrist all stuck out and I thought it my dislocate. My back hurt too! Took some codeine and a diazapan that I had left over from when I was having muscle spasms - got me back to sleep for a couple of hours. Rash on my hands has come back in the last day or two as well :mad: Oh well I guess I better go back and try and get a bit more sleep - have to be up at half 6 for work :shock:

sara akhtar
10-15-2008, 11:49 PM
Hey I'm beginning to have an identity crisis - now I'm a tadpole??? :) Needed something to make me smile before I go out to face the world today - thanks mystery-name-changing-person :rofl:

xx

sara akhtar
10-15-2008, 11:54 PM
Whoops having a :rofl: moment was not a good idea - now i cant get up off the floor :silly:

sits_inthe_corner
10-16-2008, 03:00 PM
Hugs sara

Sorry you had a rough go of it. How are you feeling now?

I had a thought about the rash on your hands. I get the same thing when I have too much acid in my system.

I can't eat oranges or lemon juice or grapefruit limes any citrus at all.

Also if I peel alot of carrots or eat to many tomatoe based foods.

The palms of my hands get hot and very itchy, break out in little water blisters then they dry up crack and bleed. Very painful.

So .... what have you been eating lately that may be too high in acid content?

coltsfan
10-16-2008, 05:55 PM
Hi Sara, I'm Robyn.
I'm sorry you aren't feeling well, I just wanted to stop off and say that you are really hilarious. I am sure my hubby and kids think that I have lost my mind. Sitting here, looking at the screen and laughing.
However, I am not going to tell them why. It's better to have them a little on edge. :lol:

sara akhtar
10-16-2008, 11:42 PM
Hi Susan, the rash seems to arrive before a really bad crash of pain - sometimes a day or so before. doesn't seem to be associated with food but definitely with stress. The thumb pain is horrendous :shock: feeling better this morning though - only woke up once last night for about an hour so feel quite refreshed. Hope you are feeling bright eyed and bushy tailed yourself? :D

Saraxx

Robyn, you keep right on laughing and keeping the family quessing :D Just wait 'til I'm really suffereing then the censor will be blowing a fuse :twisted: It's great to laugh when you can though isn't it? Are you well at the moment? Please drop by as often as you like - the more the merrier.

Saraxx

coltsfan
10-17-2008, 04:06 AM
Hey Sara,
I am not too bad at the moment, thanks for asking. Compared to what alot of you are going thru, mine seems light. I have a lot of ouchies right now and last night I woke up with bad night sweats. My first rheumy visit is a ways off, so I am trying pain management with over the counter meds.
Hope you have a wonderful day! Is your rash getting better?

sara akhtar
10-17-2008, 07:14 AM
Hi Robyn

Know what you mean about the 'ouches', it's all so inconvenient isn't it? Especially when we have kids to look after. My rash is less active at the moment - had a couple of days of blisters which have now dried to little holes on my fingers. The blisters are more prolific on my sore thumb which seems to suggest to me that they are associated with the pain but the Drs just don't seem to get it :mad: Never mind - we are luckier than most on this forum, as you say. Some stories here make me feel very humble and I wonder what the heck I'm moaning about - at least I manage to get into work every day even if I have to drag myself there sometimes. Some folks on here can hardly get about at all which must be soooo terrible - let's hope we are the lucky ones who only have minor ouches in the future :) I daren't even contemplaint being totally imobilised - some people on here seem to cope with such a brave attitude don't they? Been to get my hair done today after work which is always great medicine I find. Going to do some work on my MA this weekend - trying to keep on top of things so they don't build up - that's when the stress kicks in for me and with that comes BIG OUCHES :!: What are you planning for the weekend?

Saraxx

sara akhtar
10-17-2008, 07:17 AM
Do you ever look back at what you typed and wonder if you are at all literate??? :onfire:

rob
10-17-2008, 08:06 AM
Sometimes I look back at what I typed and not only doubt
my literacy, but also my sanity. Sometimes I think my cheese
has slid off my cracker!

sara akhtar
10-17-2008, 08:09 AM
I love that expression hahahahaha yeh but I'm an English teacher hahaha

coltsfan
10-17-2008, 08:38 AM
Sara,
I feel the same way. I do manage to get to work everyday. However, I do sometimes call the pizza man, cause I am just to worn down to cook.
I don't have a lot of plans for the weekend. Watching some baseball and football on TV, read, relax. Been kinda hectic this week at work.
Getting my hair done, that would be great! I will be happy if I have a weekend without the kids fighting. They are 14 and 15. It is a toss up sometimes if they are going to get along, or drive me crazy.
Your sore thumb. I am curious. Does the whole thumb ache and spread down to your forearm? Both of mine have been like that for a couple of days. Notice it mostly if I try to pick up something, even a piece of paper.
What kind of english teacher are you? Young kids, teenagers...

Just so you know rob, I have never doubted your sanity. Yet! :wink:

sara akhtar
10-17-2008, 09:43 AM
My kids are 14 and 17 year old girls - fortunately they never have a crossed word so that does make life much easier. They are lovely but they do want to be with me to chat and laugh a lot of the time so even if I sneak off for an early night in bed watching TV they tend to be sprawled out on the bed with me giggling about something or other. I teach English language to adults - used to teach teenagers in school but I enjoy this much more. Actually I am going to be assisstant centre manager in a couple of weeks so that'll mean longer hours and more stress I suppose - but when you've got 2 kids to put through university there's not much option is there?

Do you reckon the Invisible Name-maker is all knowing and can actually see us through our monitors? If so, Robyn, we have to wonder about anyone labelled 'Rabid' don't you think :wink:

rob
10-17-2008, 10:14 AM
I had to laugh at the title "Rabid" Pit Bull when it suddenly appeared. Although I'm pretty much a regular meat and potato, outdoor type of guy, I'm not a dog lover at all. I have 3 cats. go figure. As for not doubting my sanity, stick around Coltsfan!

Sounds like you have an interesting, and satisfying job teaching English to adults Sara. Before my lupus fog and other cognitive problems got really bad, I volunteered with Literacy Volunteers tutoring illiterate adults in my area. It was really a great job. Felt like I was really helping people better themselves in a small way. In that program, most of the students were there because they wanted to be there, so having a person who was eager, and ready to learn was nice.

I always thought about the Bill Murray movie called "Stripes". In one scene, the actor Harold Ramis is an English instructor for people wanting to get their American citizenship. He asks his new class if anyone can speak even a little english. This little Asian fellow in the front row smiles and puts his hand up. The teacher calls on him to say the words he knows. He then says in a heavy accent-"Son of a Beech! Sheet!". Then the whole class repeats it. It's hilarious. Anyway, I've never actually had that happen, but it would have been funny if it did.

Rob

sara akhtar
10-17-2008, 12:22 PM
I absolutely love my job Rob and it is so true what you say about people wanting to learn, making the job worthwhile. When I think back to the totally disengaged, bottom set year 11 (16yr olds) boys and then I see them coming through the door now at aged 40 - well not exactly the same ones obviously; I'm not that old, but you get the gist. It's like I'm there to say 'See, I told you to work harder in my class' hahaha. They are very very motivated and we have some great laughs. The big problem with most professions here in the UK is that there is soooo much paperwork that it makes the job almost unmanageable. Do you work at the moment Rob or are you too busy being outdoorsy? I love dogs by-the-way and my dog loves cats (I think she could probably eat a whole one).

Sarax

coltsfan
10-17-2008, 12:34 PM
Sara,
mine are 14 year old boy and 15 year old girl. I sometimes think they fight because they are so close in age but not quite the same. There is 20 months between them. They think they should be treated equally, with the same privileges. But they are really great kids.
That is so cool, that you teach adults english. By then, they should have lost most of their attitude.
Rob, my scottish terrier would LOVE your cats. :lol:
I am curious as to why they thought you were rabid though :o
Is there a secret you are keeping from us?
Robyn

rob
10-17-2008, 01:18 PM
Oh, the whole rabid thing is just from the list of made up names the site owner has programmed in to show up as you have more posts under your belt. You guys will be Rabid Pitbulls when you reach the 400 post mark. It's funny to see your "name" change as time and posts go by. It's a totally automatic process, so there's actually nobody physically choosing any certain name at any certain time. It's all pre-programmed.

Sara, as far as work, I am almost totally unemployed now. I recieve full Social Security Disability. I used to own my own company. I was a Smallarms Engineer. I used to design various firearms systems and accessories for the Dept. of Defense. I would work with various agencies or branches of the military on projects where I was required to go out into the field to evaluate a certain weapon or component with the people who were actually going to be using the item. Then come home to the factory, and either re-design, modify, or come up with an all new design or concept as needed.

Now, I do some volunteer work at a local museum to keep busy. Since I'm a volunteer, I don't feel that bad if I can't do the job every time. It's a military museum, and I'm basically building some model aircraft for them to display. I enjoy it, and it's zero stress. Many years ago, I was also in the Army. Used to drive a tank. Pretty much everyone in my family is involved in Law Enforcement and/or the military on some level. My sister is the administrator at the local Veterans Hospital. I have a nephew in Army Special Forces. My Dad is retired federal law enforcement.

Have you always been a teacher Sara? I actually have no formal training as a teacher. I do have formal training, but it's in the field of mechanical engineering. I just saw an ad one day and thought I could help. And, I was just an assistant/tutor, we did have people with credentials doing the really involved parts of the course. It was rewarding. I'd like to be able to work again someday, but I'm a realist. My SLE is in a constant state of flare. I feel sort of OK for a day or two, and bam, I go into a full flare about every 3 or 4 days. And earlier this year I was also diagnosed with Multiple Sclerosis on top of SLE. It's called an overlapping illness. That's original, huh. So, managing all these health issues is now my job. Not fun, but what can you do? You just have to face it and keep on going. Anyway, I love your sense of humor. Laughter is something we need plenty of around here. Have an enjoyable Friday. I'll talk to you later.

Rob

sara akhtar
10-17-2008, 01:26 PM
At least we are safe Robyn as you are a growing guppy and I'm a tadpole and rabid dogs have a fear of water :lol!:

sara akhtar
10-17-2008, 01:44 PM
Hey I'm a little guppy - been reborn :bday: Phew thank God I'm still in the water to escape any rabid pit bulls :wink:

coltsfan
10-17-2008, 06:41 PM
Rob,
How interesting that you were a small arm engineer. I work in the engineering department of a radio frequency connector manufacturer. We design and manufacture small connectors for use in aircraft and test equipment.
You must be extremely proud of your family. I would be. That is a very impressive list. Is your nephew deployed currently?

Sara, I didn't even realize that I had evolved into the growing guppy. We are like a guppy gang now. :lol:

sara akhtar
10-18-2008, 01:47 AM
Rob

You have obviously led an amazingly interesting working life which I guess is more than a lot of people have to look back on. I should imagine that it has been difficult for you to slow down when you have been so active in the past. I have to agree that not doing paid work is wonderfully stress free - I went back to work in January after being at home for 18 months. That 18 months was gloriously relaxing - unfortunately our financial situation changed and I needed to go back to work. I opened the newspaper and saw the ad for this job which takes me 4 mins to drive to from my driveway!!! It seemed like fate stepping in so I applied for it and here I am lol. working life is going to get more stressful as my role changes into more of a management role but I need the extra oney for the girls' uni fees over the next few years so I'll try to pace myself and cope. I do love the job though, so that's a bonus - many people are stuck in jobs that they hate aren't they?

Tell us more about your life Rob - so you work in the museum, making models, and you have a sister and a nephew and a Dad. You used to make guns (what a boy's dream job hahaha), oh yeh and you have cats. Do you have a family living with you? Tell me about the place where you live - is it rural or city location? Very important incase Robyn and I decide to drop by for a week (don't panic - that really WAS a joke Rob lol). MS too - Gosh that's not fair :cry:

I live near to Manchester in the UK - I wold really like to move to somewhere more rural like the place I grew up but I love the convenience of the city. Can't afford to move house anyway so no decisions to make there then :roll: Haven't always been a teacher - I did an English degree whilst the kids were small and I looked after other people's kids to earn money so I could stay home with my own two. Then I went to Uni for 2 years to do my teaching post grad and then went into high school for 2 years. My eldest then had an accident and I gave up work to get her back on track and stayed off for 18 months lol.

What about you Robyn? Life story on a postage stamp please :lol:

Off for my clarinet lesson now folks - I'll check in later.

Saraxx

rob
10-18-2008, 01:24 PM
Hi Sara,

Hope you are having a good day. I'm feeling a bit rough today. Lots of brain fog. I'm going to wait until I have a clear head to tell you my story. Gotta try to get some sleep for now, but I'll be back. Talk to you later.

Rob

sara akhtar
10-18-2008, 02:29 PM
Hope you feel better after a good rest Rob. I'm off to bed myself now as it's almost 10.30pm here and I've had a busy day. Overdone things a bit and forgot to take my anti inflams and codeine at lunchtime so I think I'm in for a rough night :bad-words: Going to have to resort to a DiazapanI think :sleeping: Sometimes when I feel OK I start to doubt that there is anything really wrong with me and then I suddenly feel like I've been run over by a truck and it reminds me that it can't be normal to feel like this every other day for months on end. I never have more than one good day at a time and even then I usually pay for it at night! I think the pain in my chest and back might be because my lung is getting worse :( And my stupid thumb is really sore now too :!: I hope this all goes away one day - I don't want to be like this for ever. It seems trivial compared to what lots of you are all going through but it's all so frustrating all the same. Anyway - enough self-indulgence from me :) You take good care of yourself and feel better soon. I promise to be more cheerful next post :D

Saraxx

coltsfan
10-18-2008, 04:13 PM
Sara,
Life on a postage stamp, hmmm.
I am 37, married my high school sweetheart. We will be married 19 years in December. He served in the Marine Corps for 4 years. (I was a Marine Corp dependent.) My daughter was born in North Carolina, while we were stationed there. We moved back home to Indiana. I had my son about a year later. We have a cute little house in a small town. You would probably call in rural. The four of us and our dog.
My brother was diagnosed with lupus in 1993. I went to the doctor a couple of months ago, had blood work done. He is sending me to rhuemy in Dec.
Found this website and love all of the people on it. Can't hardly wait to get on and talk to everyone.

Rob,
Sorry that you are feeling so poorly today. I hope that your rest helps you. I can't wait to read your story too. I have never been to Maine. I have always thought I would like to go. The closest I have been is Connecticut. My mom-in-law used to live outside of Hartford. Have you ever been to the midwest?

sara akhtar
10-19-2008, 11:21 AM
Aawwww you married your high school sweetheart - that's such a rarity these days well done!! I thought Lupus didn't run on families but I'm hearing more and more on here that people's relatives have it too - worried now that if I have it I might have passed it to the kids. No signs so far though so that's a relief.

Hope Rob's feeling better - amazing how you quickly begin to feel part of the community on here and feel concerened for people who live on the other side of the world. Hope your kids behaved this weekend :wink: Mine have been out most of the time - youngest at a sleepover and th eldest at her weekend job - so life was peaceful :D

How have you felt over the weekend? I've felt pretty good today - usually do on a Sunday - must be due to slowing things down a bit for a couple of days I think.

I'm struggling with the time difference, as when I get up in the morning and look at my post you are all asleep :mad:

Are you working tomorrow?

Sarax

coltsfan
10-19-2008, 04:46 PM
I agree, the time difference thing is weird. Yeah, I have to go to work tomorrow. YUCK! But it is mostly a computer job, so I don't have to do a whole lot.
The kids were pretty good this weekend. Oldest has a part time job at an apple orchard so she was gone for half of it. The youngest helped me with the heavy stuff around the house.

I hope Rob is better too. If you're reading this Rob, we miss you. Get well soon so you can chat with us.

Was your weekend very relaxing?

Robyn

rob
10-19-2008, 06:10 PM
Hi Sara, and Coltsfan,

How are you two doing? You both sound like your doing OK. As for me, I'm just having a usual flare. About every three days it gets bad, then it subsides for a day or two.

As for my story, well, here it goes. Lets see, I'm 40, and live alone with my three cats. I'm also divorced. I live in a fairly remote area on the coast of Maine. I have a ranch style house on 2 acres with a view of the ocean. The closest town to me is a small fishing village called Searsport. My closest neighbor is almost a mile away.

Job wise, I spent about 16 years in the firearms industry. I also spent 4 years in the Army, used to be a crewman on an M-1 Abrams Tank. I was also a firearms instructor. After the Army I went to various universities and tech schools to learn the specific engineering needed for weapons design, and then I started my own business. I was basically a govt contractor. Used to work with various branches of the military as well as federal law enforcement agencies on new weapon concepts. After 9-11, all the various special forces teams were given huge budgets to invest in new equipment. Things really took off business wise. When I sold the business because of my health, I had 20 employees, and a small factory with all the machinery needed to fabricate the stuff I designed. It was my dream. I do miss it, and I miss my employees who were also good friends of mine.

Most of my family live close by. My parents live in Bangor, and I have two older sisters who just live a few miles down the road. My father was in the Marine Corps, and later a policeman, and then he got a job with the feds. Dad worked for the Secret Service and was at the White House during the Nixon/Ford years. Mom's a retired hospital admin. One sister is the admin for the local VA hospital, and the other works for child protective services. I have a nephew in the US Army Special Forces who is at Army med school right now stateside studying to be a combat surgeon. I have a niece who is an agent with the TSA. And another nephew who is an engineering major at MIT.

I'm on full disability now. I do volunteer work for a local military museum building model aircraft for various displays. They supply the materals, I donate my time building them. I do this from home. I do it at my own pace, and since I'm doing it for free, it's very stress free.

Tell me some about you guys. Sara, you mentioned an accident with one of your children? Scary. Is the area your in big city, or smaller suburbs? Coltsfan, what is the name of the company you work for? Working with comm equipment and plugs/connectors sounds very interesting. I have been in the midwest many times. Got to travel alot back when I was working. How long was your husband in the Marine Corps?

Well, I'm getting cramped fingers, so it's time to go for now. Gotta go feed my three "kids". Hope you both have a good night. I'll talk to you all later.

Rob

PS Thank you both for the kind words and well wishes.

sara akhtar
10-19-2008, 11:45 PM
Oh my God - a house with a seaview - you are sooooo lucky Rob. That is one of my dreams. Problem with living on a small island like the UK is that you are lucky to have a tiny back garden let alone 2 achres! Lucky too for having your family living close by - I have my old Mum but nobody else and my husbands family are all spread out around the globe. You must really miss running your company - hope selling it made you a packet :wink: Actually you are beginning to sound like a very good catch young man :grab:

Robyn, we need to keep an eye out for single women in Rob's area I think they'll be queueing up, don't you?

My daughter fell off her bike going over a speed hump and landed awkwardly, destroying her knee which she then had to have reconstructed. That was actually the least of her probs as the stress of the whole thing gave her non epi seizures which meant that she often wandered off and would be unconscious for 20 mins or more - very scary. She was 14 then but now she's 17 and gorgeous - clever too, and has a great work ethic. She never comes home drunk - doesn't talk back - adores her little sister and grandma and cant be bothered to have a boyfriend yet (says she doesn't want to have to consider anyone else when she has things to do). She just went to India for the summer and did volunteer teaching - travelled on sleeper trains and camped in the dessert on a camel treck! She went to see the Taj Mahal and stayed in the pink city of Jaipur.

I have a younger daughter who is 14 and she is the true academic of the family. She wants to do medicine and is one of those lucky people who fits everything into their life without a struggle. She plays 3 instruments, has singing lessons, is in a girls' choir, a musical theatre group, a drama group, is an A grade student and has a great social life with her friends! She is also one of the nicest, kindest people I have ever met.

My husband is of Pakistani origin but was brought up in Kuwait. He and my 2 girls are all muslim whilst I am a Christian. The best thing about that is that we celebrate everything - especially as our best friends are Hindu :lol: We are all fairly liberal - my husband never drinks but doesn't object to the girls and I having a glass of wine occassionally with Sunday lunch. Hubby works very hard and very long hours both at work and then when he comes home. He is a website purchaser for a growing company and it is very stressful for him.

Oh yes and then there's Jazz my lovely dog. We bought her from the dogs' home when my daughter refused to walk on her poorly leg. The girls had always wanted a dog and it seemed like the perfect way to get her to have the confidence to leave the house. It worked! The two of them spent the summer in the park in the sunshine. Of course now neither of them ever walk the dog unless they are told to hahaha. I think Jazz has something really special about her - she would have been great as a dog for the disabled I think. She's a collie-cross and very pretty.

That's my life folks. Now off to work - split shifts today so I will be hurting by 9pm tonight :cry:

Have a great day you two - you must be snoring away at the moment!

Sarax

coltsfan
10-20-2008, 04:38 AM
Hey Rob,
Welcome back. Are you feeling any better?
I work for a company called Connectronics. I have been there for 14 years. It is very interesting most days. Some days, I just want to stay home in bed. But that's the way it goes, I guess.
My husband was in the Marines for 4 years. He worked in the motor pool, working on the trucks and such. Spent 18 months in Okinawa, during the first gulf war. We loved the military life, but when my daughter was born, we decided to be near family.
Wow, you have a very bright and industrious family tree. Is your company still up and running under the new ownership?
Sara,
How great that your girls can grow in such a diverse environment. And you must be very proud of them. My daughter (almost 16), is very bright as well. Does her homework without any prodding at all. Does extra credit work all the time, just for the bonus points. Very athletic as well. Softball, volleyball, tennis, track...she had tried them all. And she is so pretty, sometimes I wonder how she is mine. My son (14) however. He is very bright but sometimes has difficulty in applying himself. Currently, this is what I battle. He will spend the time to do all his assignments, then FORGET to turn them in. :? He is an excellent tennis player.
Is your oldest better now? Wow, to be 17 and a world traveler. Very mature.
Are you originally from the UK?

rob
10-20-2008, 03:12 PM
Hi,

I'm feeling a little better today. Not 100%, but tolerable.

Sara, thank you for the "good catch" compliment. You really have a diverse group of family members and friends. To celebrate Muslim, Hindu, and Christian holidays is very cool. And your daughter spending time in India, wow. To see the Taj Mahal would be an unforgettable experience.

Although I've yet to travel to the UK, I know that land is a finite resource there. Here in the US we tend to take all the space we have around us for granted. My 2 acre lot is considered small. My oldest sister's house sits on 60 acres. Land in a remote, relatively undeveloped place like northern Maine is dirt cheap.

Coltsfan, I sold my business to my shop manager and two of my employees. They pooled their funds, and it worked out great for everyone. My shop manager was one of my best friends back in tech school days. He has done things with the company that are beyond my wildest dreams. The company now has around 50 employees, and has moved into a much larger facility. The dissapointment, and the sadness and anger I have for having to give it all up is made alot less knowing that my dream, is now in the hands of people who are making it their own dream. I am very, very proud of them all.

What was it like living on Okinawa? From what I know about it, it's a beautiful place. Oh, I pulled up the Connectronics website. Really cool stuff. Yes, I'm a technology geek at times. Your 14 year old sounds like me. If I had a dollar for evertime I was told "you're not applying yourself" back in school, I'd be semi-wealthy.

Well, It's time for the evening pull the string session with my cats. If I don't do this twice a day, I usually wake up with one or more of them sitting on my chest staring at me with their string in their mouth. Duty calls. Have a good evening all.

Rob

coltsfan
10-21-2008, 05:21 AM
Hey Rob,
The pictures that he sent me back from Okinawa were absolutely beautiful. A different culture, but all in all it was an experience that he treasures. I stayed in the US when he was deployed. For me to go, he would have had to stay for 3 years.
Thanks for the hope for my son. If you were that way, yet went on to start your own successful business, then there is light at the end of the tunnel. :lol: What is your former business called?
From what I gather, it is a boy thing. He is always telling me, I'm just not organized. Whatever.
Wow, your sister has 60 acres? Is it ocean side too?

rob
10-21-2008, 04:25 PM
Hi Coltsfan. How are you today? I'm hanging in there. My business was called VCG Incorporated. V is for my last name, and the CG is for Custom Gunworks. There was a subsidiary of my company called Coating Technologies. That part of the shop was for putting the various finishes on the completed weapons and components. We ended up doing alot of metal coating on non firearm items for various manufacturers, so we needed the reference to "Guns" removed for various reasons.

My sisters place is inland about 15 miles, so no ocean view. It's beautiful rolling green hills, and they have a large pond out front.

I had some rather rough times in my gradeschool and high school years. I only "applied myself" to those classes I thought I needed. There were other problems that were out of my control as well. Long story short, my grades were terrible, and I barely squeaked by. But, in college I had an almost perfect 4.0 average, and I did go on to be successful. So I'd say there certainly is hope for your son. Hope you have a good night, I'll talk to you later.

Rob

sara akhtar
10-21-2008, 11:58 PM
Robyn, if it's any comfort to you - I left school with absolutely nothing at all! I went to a very typical English girls' grammar school and didn't even stay long enough tosit my exams - no point as I had truanted so often that I was way behind lol (I blame that on the boys' secondary modern school across the road). I did all my education as an adult - some kids just aren't ready in their teens. I agree about it being a 'boy thing' though - I noticed that when I was teaching in high school. Often though boys pull it off at exam time but don't do the work throughout the year. You obviously love your lad to bits which is his best defence against the world - he may have a spurt later on when he panics and realises that he has to pull his finger out and get some work done. I know what you mean about kids being disorganised too - my eldest is terrible! I clean her room and an hour later you can't get through the door!!!! Good job I have learnt to pick my fights and room tidying isn't one of them hahaha. She has forgotten to go to sit a GCSE module at school because she went to the dentist!!! She was very disorganised at 14 but now at almost 18 (3 weeks time phew we got there) she is much better - though I think the room is worse lol. Just love and enjoy him would be my advice - not that you asked for it but hey, we're women we give it anyway hahaha.

Rob I'm so jealous about where you live - do you walk on the beach in the mornings? Do you ever sit by the sea and read a book? Please tell me you don't - I don't think I could bear it :mrgreen: I'm green with envy.


Off to work now. MR scan later :cry: got to keep still and be quiet for half an hour :?

Have a good day you two
hahaha just realised you are both Robs reminds me of the two ronnies - the two robs :rofl: .

Saraxx

rob
10-22-2008, 07:41 AM
Hi Sara,

Hope your MRI goes well. I've had three of them this year. Boring stuff. I do indeed sit in my yard and listen to the ocean while I read. I enjoy watching the lobster boats and schooners that go by from time to time. We don't have much of a beach as it's a 200 foot cliff strait down to the water. The entire coast is incredibly rocky with high cliffs. I've seen pictures of the UK coastline that look very much like our own here. And of course, the North Atlantic is an icy cold 50 degrees year round.

I do like the cliffs though. The water makes a really unique sound as it crashes against them. In the summer, I paddle my kayak out to an island about a mile out thats still rocky, but flat. I can spend my days there and totally lose track of time, and my worries go away for a little while. I enjoy the wildlife as well. Harbor seals, bald eagles, moose, and once in a great while, a blue whale shows up. A significant portion of the coast here is either a National Park, or a protected area. It will remain pristine, and never be developed or exploited. I do love it here. Anyway, I've been up all night again with joint pain and my usual insomnia. Gotta try to get some sleep. Hope you have a good day.

Rob

sara akhtar
10-22-2008, 11:46 AM
Oh my God - where were you when I was choosing a husband :mad: You are living MY dream :mrgreen: I tried kayaking this summer for the first time - thought I'd never straighten at the hips again :shock: Great fun though - even if we didn't go far from the shore - and it was only a four mile lake rather than the ocean hahaha. Only really did it to show my teenage kids that I wasn't past it (actually I am but wasn't going to admit it to them!) I know it's bad news having all this pain Rob but you are so very lucky in lots of ways. Think of poor me in pain in rainy Manchester - I feel soooo cheated now thinking of you sitting listening to the sound of the ocean whilst I'm trying to block out the sound of the yobs walking past :rofl:

MRI scan was a total bore - and they were running an hour and a half late so I was too late to go to Uni tonight :mad: Felt fairly painfree since about uummm Monday night - that's quite a record for me :lol: I looked on the Myositis forum tonight - if I'm diagnosed with that I'm still coming here :!: Their's is not very active compared to this - you could be dead a month and no one would notice :twisted:

Anyway I'm going to stop ranting now - off to bed to watch Silent Witness. Take care - hope you sleep better tonight. Have you tried meditation - I'm thinking of joining the local Buddhist Centre. Can't be botherd to do anything whilst I'm in limbo though.

Nite nite
Sara




Robyn where are you - you've been AWOL for 2 days now. Hope you are feeling OK?

coltsfan
10-22-2008, 12:42 PM
Hey Sara,
Here I am. I've been here, but I've been very absent minded the past couple of days. I think I am daydreaming about living at Rob's house. Except for the winters and I don't do seafood. I could paddle out to an island and be lost for a few days. Sounds wonderful.
How long til you get the results of your MRI?
Rob,
We don't have a lot of rolling green hills where I live, we have a lot of corn and soybean fields. But I miss it when I am gone. Funny how you get so used to everything. It is started to get cold here. It got down to 27 degrees last night.

coltsfan
10-22-2008, 03:08 PM
I just had to jump on and tell you this. They are saying snow flurries here on Monday. YUCK! Make it stop, I'm not ready yet. :!:

Rob,
Did the new people change the name of your company or do you get to live on forever as a weapons designing genius?

sara akhtar
10-23-2008, 09:01 AM
Ooohhh lovely - sledging :P

rob
10-23-2008, 11:13 AM
Hi guys,

How's everything going? Good, or at least tolerable I hope.

Coltsfan, it's getting pretty cold here too. 25 last night. Lots of frost in the mornings now. They say it may snow tomorrow. If it does, I'm going to have to write a strongly worded letter to Mother Nature letting her know that it's way too early for the white stuff. The name of my old business has been changed. The company is going in a new direction, and they needed a new name to reflect the change. I don't mind. I had my day in the sun.

Sara, for many years I lived in an apartment in a noisy place, so I know what you mean. And where were you when I was choosing my now ex-wife? :lol: My father kids me about some of my past relationships, and the train wrecks that they turned into. Live and learn I guess. Honestly, ever since my last relationship ended, I don't know if I'll ever get into a serious relationship again. My divorce was 15 years ago. After I put all that behind me, I met a girl who I thought I'd spend a lifetime with. We dated for 5 years when I popped the question. She said yes, and we ended up being engaged for a year and had our wedding plans all laid out and ready. Then I get the SLE diagnosis. Not long after that, she came home one day and told me she was leaving. She told me that she needed someone with a future, not some sick guy who will be dead in a couple of years.

In rapid succession my career ended, and most of my friends and family stopped calling, and stopped coming around. They basically wrote me off, and moved on. I decided to take a huge handfull of xanax, and washed it down with a pint of vodka. I thought the booze and pills were not killing me fast enough, so I got in my car and turned left in front a semi truck. That almost did the trick. I woke up 3 days later in the hospital with multiple broken bones, and banged up pretty bad. Of course, they had to counteract the overdose as well. I'm glad I don't remember any of that.

That was the darkest period of my life. It was bad. I've since put much of that behind me, and my family and I have mended fences. Despite having SLE and MS, I enjoy my life. I have new friends, new interests, and many other wonderful things that I would have missed out on if I had died that day. And, despite my former fiancee's prediction of my lifespan, it has been 5 years this month since I was diagnosed, and I'm very much alive. And, the house on the coast of Maine was a dream that she wanted to make true as much as I did. As far as I know, she lives in a tiny studio apartment in the middle of the city, and I have the house on the ocean. Ha! I've never spoken to her since, and I never will. Too bad for her I guess.

Anyway, when I told you guys my story, I told you mostly about the good stuff. I thought I should tell you the the other side of the story, as it has shaped who I am today. Life is good. Anyway, have a great day all. Talk to you later.

Rob

sara akhtar
10-23-2008, 11:38 AM
Well she was obviously out of her tiny mind - not least because she let you keep the dream house. I'd definitely have had that off you :twisted: I'm glad you've moved on my friend - and it's lovely to think of you kayaking to that little island and reading whilst watching the lobster boats. We've all had dark times but yours were truly the pits - she didn't deserve you obviously. Her loss is our gain :D She wouldn't have let you spend so much time chatting to your friends on here I'm sure.

Have you seen how many hits this thread has had hahaha we three are like soap stars :BIG: I'm thinking we are going to have to start a fan club forum soon :wink:

Sara

coltsfan
10-23-2008, 06:38 PM
HAHA :lol: soap stars. I love it. I can't hardly wait each day to see what you guys have posted.
Rob, she was an idiot. And I am glad that your short bout with the ugly stuff didn't work. I know that I, for one, consider my life a little richer having 'met' you. Each day that you wake up to the sunrise over the ocean is one more day that she is probably kicking herself in the rear for leaving.
And if you need another signature for that letter to Mother Nature, let me know. I have a few things to say to her myself. Like what happened to chilly. We went from mild to possible snow flurries. How wrong is that!?!
Man, I wish I had a single sister. I would try to hook you up Rob. Then I would get the best of both worlds. My friend would have a companion and I would have a reason to visit the magical island. :wink:
Sara, how are you feeling? Has the pain in your thumb gotten any better?
Gotta run, want to catch a few innings of the baseball game before I am off to bed. Gotta work early in the morning.
Talk to you soon,
Robyn

sara akhtar
10-23-2008, 11:53 PM
Come on you two - at least you have sunshine in the summer months to offset the winter. All we ever get is rain all year through.

And Miss Robyn - good job you haven't got a sister DO NOT BE TRYING TO MOVE SOME WOMAN INTO MY DREAM HOUSE!! How would I be able to daydream that I am sitting on my clifftop, reading the latest Phillipa Gregory novel, listening to the gulls, WITH SOME SIZE 4 BLONDE IN A BIKINI IN THE BACKGROUND!!!!!!! IT IS NOT GOING TO HAPPEN!!

Pheew, sorry about that folks, getting a bit territorial there for a moment :twisted: Anyway Rob needs to run it past us before he starts down the road of road crash - ooops sorry I mean romance again :evil: Robyn start drawing up a list of criteria - she needs to be someone who can look after us at the house when we are old and cranky and nobody else wants us so she needs to be very young oh yes and very ugly so she won't ever have any other offers and bugger off and leave us to take care of ourselves. I'm sure we can find a suitable homely lass :lol: Oh yeh - make sure she's strong too so when Rob's old and falling to bits she can paddle him in his kayak :P

Any particular requirements from you Rob? You see what good friends we are - we are thinking of your happiness :angel: ( :wink: make sure she's fat too Robyn - good for our self esteem)

Sarax

sara akhtar
10-23-2008, 11:57 PM
Whoopee I got 'bugger off' passed the censor :smilecolros:

sara akhtar
10-24-2008, 12:10 AM
Rob
Just incase - road crash/romance was a reference to your dad's comment about train wrecks not the other car crash. Just had to clarify that before I went to work (just dashed back from the car) or it'd have been on my mind all day :)

Have a great day - or night which ever it is with you two.

Sarax

coltsfan
10-24-2008, 03:15 AM
you know Sara, I like your way of thinking better. I apologize for trying to move someone in. However, if you saw my hips, you would know that any sister I may have had, would not be a skinny size 4 blonde :lol:
I'm sorry about the rain. I see your point. I woke up this morning to rain. But I really do hate snow Sara. And the cold.
Hope you have a great day at work. It is the weekend almost!
Rob, I retract my offer of the non existent sister. If you see the previous posts, Sara had a much better idea. :angel:

sara akhtar
10-24-2008, 08:19 AM
He's ignoring us Robyn, he's scared we're going to move in with our bikinis on hahaha. And believe me you ain't even seen hips 'til you've seen mine :roll:

Wrap up warm against the chilly weather you two - cold weather is sooo bad for the aches. Nothing like a hotwater bottle - think it's phsychological. OOhhh and fluffy bed socks and sloppy Joe sweater (no wonder I only got pregnant twice - sound like a gorgeous sex kitten don't I?)

My chest xray came back clear whooppeeeeee. Lung collapse sorted itself out all by itself - don't know hwy on earth I got it in the first place :? The pain in my chest and shoulder blade area when I breath in must be a bit of muscle aches I assume. Decided to stop the Diclofenic and codeine for a few days and see what happens. Haven't had anything since last night besides thyroxin - feel OK -a few aches and pains but maybe they are old age setting in. The rash on my hands gets a bit worse when I don't take anti inflams -no idea why that would happen :shock: I'm going to stick it out as long as I can otherwise I'm never going to know if I'm better or not.

I'm going to do normal stuff this weekend like clean the house and tackle the supermarket - always got stuff to do for work and uni too. Hopefully be OK to have Mum for dinner Sunday evening - that has come to a standstill the last 4 months. I'm going to give it all a go anyway - fingers crossed that I'll be getting back to normal soon and then can assume that it was all a nasty virus that caused the muscle inflamation and lung probs. Just need to ditch the rash,the sore thumb, back and chest and I'll feel a bit more normal :lol:

Obviously I am still going to be coming on here to wind you two up even if I am better :twisted: You can't get rid of me that easily :wink: Not when I have my house to check up on. Don't want Rob having any wild parties and wrecking our place do we?. I'm thinking he may as well have the stair-lift fitted now and then it'll be ready when we need it - what do you think Robyn? Or maybe the big, fat, strong girl we are marrying him off to will just give us a fireman's lift up the stairs :idea:

Keep cosy over there - snow is definitely on its way - I checked.

Sarax

sara akhtar
10-24-2008, 08:21 AM
How can hot water be *Fartknocker*??????????????????????

rob
10-24-2008, 09:37 AM
Hi ladies,

Had two rough nights in a row. I've gotten almost no sleep for a couple of days now. Terrible fatigue. I get the shakes when I have a bad flare. Shaking like a leaf. Fog and confusion are bad. Not fun. Too bad, it's suddenly warm today. 60's and sunny. Hope you two are doing ok. Sounds like you got good news Sara. Need to sleep. Getting a prescription for a sleep aid called in today. I can't remember what kind it is. Sister is picking it up for me. I'd drive, but when I'm like this I can't rember where I am going, and I gforget how to shift gears. I'll be ok, just need some quality shuteye. I'll talk to you guys later.

Rob

sara akhtar
10-24-2008, 10:32 AM
I hope some good quality sleep refreshes you Rob. I'm glad you have the good sense not to drive when you feel bad. There'll be plenty more sunny days, don't worry about that. We're not going anywhere - we'll be waiting here for you when you get back won't we Robyn?

Rest well - we are both there with you, in spirit, stroking your brow to sooth and comfort you. Can you feel it? It's all in the power of thought :wink:

Get some zzzzzzzzs and chat later
Sarax

coltsfan
10-25-2008, 06:25 PM
Oh Rob, I am so sorry that you feel so crappy. Are the meds helping?
It's great that sis is going to be there with you. Just in case. I know I always feel a little bit better when I am not alone.
Sare, whooppeeeee. Great news on the xray. How are you doing without the stuff? Are you on the path to recovery or not quite there yet? I am thinking we better not rely on the big fat strong girl too much. She may throw us down the stairs or off the cliff just so she doesn't have to share.
Gonna try to go get some sleep now. Have woken up around 4 in the morning the last three nights. Sleep is decent for the first few hours. Gonna try again.

sara akhtar
10-26-2008, 02:23 AM
Hi you two

Why is it that we don't sleep? I was up at 2am this morning and came downstairs to read in the end - I wasn't even in pain :mad: Maybe we have woken up so often when we are in pain that we get into a cycle??? I hope you two are managing to cath-up on some zzzzzzzzs and feeling better. I'm so glad I'm in the middle of a great book at the mo - makes being up in the night less annoying.

I am managing without any medication and my aches are minimal - they are still there but in a sort of 'stiff, achey old woman' sort of way which is fine. I had a really busy day yesterday - pushed myself 'til bedtime - shopping and baking cakes and didn't exactly feel like I could run a marathon but I was OK. I think I may need to think about building my muscles back up because after 4 months of doing nothing but get myself into work it's bound to have had an effect -I am going to start by walking my dog again I think - hubby has taken on that task hahaha. A year ago I used to wear my pedometre and make sure I walked 20,000 steps (10 miles) a day - didn't have a job at the time so it was lovely 'in the park' kind of walking.

I keep dropping things and can't unscrew jars anymore - do you two ever have that problem? Did manage to open a bootle of veg oil last night and then dropped it on the floor - you know the scenario, kept trying to grab it mid-air but it was so slippy I ended up squeezing it all over the kitchen :P I feel like either this is finally going away or it's just giving me a little rest before it hits me again and I don't know which yet. Hopefully the MRI results will bring some good news.

Well it's a fine but chilly Sunday mornng here. I've got a mountain of stuff to do for my teaching and uni and I've invited Mum for dinner tonight - trying to get some normality back into our lives. Think I'll sort things here then try a walk - actually that makes me feel a bit nervous incase I can't do it :shock:

Take care you two - get plenty of rest and good food. How's the weather?

I hope you are feeling a little better today Rob.

Sarax

rob
10-26-2008, 12:46 PM
Hi ladies,

This is one of those days that just, well.. I don't know. It would be really easy right now to get really down, so I'm trying not to. Perpetual nosebleed last night, no sleep. I get them from time to time, and they usually stop quickly. Last night it took 3 hours to get it to stop. The whole time all I can think of is the fact that I finally can sleep, if my faucet of a nose would just stop. Frustration beyond belief. And my right leg is numb/tingling. It's a result of CNS involvement from MS. It came on slowly though, and it's not complete, so thats good. The first time, it was like somebody flipped a switch. Bang, leg no longer works. Split my head on the kitchen counter on that one. I'm 6'1" 220 lbs, so when I fall, I fall pretty hard. Got a regular Dr. appt. tomorrow, going to look into the nosebleeds. Probably blood pressure related. I know what you mean Sara about not being able to open things. I was the guy, you know the type, that people always come to to open things. Oh, just take that jar to Rob, he'll open it. That lug nut is frozen? Give Rob the tire iron, he'll break it loose. I was notorious for breaking wrenches and screwdrivers. Not anymore. My hands are just so weak now.

I hope you ladies are doing well. If I repeat myself, or sound loopy, it's just the fatigue. The stuff I was prescribed is Ambien. Makes me sleepy, but the darn nose thing overrules the sleepiness. Just want a break from all this for a day. Sorry to be a downer. Anyway, I'm going to watch one of my favorite movies, and escape for a couple of hours. The Shawshank Redemption is my all time favorite. Morgan Freeman is absolutely brilliant in it. Hope you ladies have a good Sunday afternoon, and evening.

Rob

sara akhtar
10-27-2008, 08:25 AM
Chin up Old Boy :)

So sorry you are going through a bad spell - red hot poker up your nose should do the job. It's very strange because I had a nosebleed yesterday evening at about 4pm our time - were you sending me subliminal messages Rob? I agree about it being a blood pressure thing because that's what I thought as the old girl next door had just popped over to say her husband passed away and I reckon that it must have put my BP up a little. Hopefully the Dr will have a better suggestion than the red hot poker :twisted:

You must get really fed up when things are like this Rob but just remember that there will be better days to come my friend - be kind to yourself and concentrate on the good things in your life. You have family and friends and a beautiful home (which I am kindly letting you borrow for the time-being - it's OK you don't have to thank me) and lots of folks here wait to hear from you daily.

All muscles and no brain is soooo boring in a man anyway - so what if you can't swing a wrench any more; your superior intelligence is obvious for all to read :lol: I baked fruit gingerbread - wait a minute, I'll send you some to make you feel better. Got it? See I knew that would help :wink:

Well I'm back to work now - only popped home to make sure the kids have dinner to eat whilst I'm teaching tonight. Thought I'd check on you whilst I was home - and a good job I did young man :!: No more sad thoughts today please - promise? Let us know what the doc has to say.

Look for something to smile about today :wink:

Sarax

coltsfan
10-27-2008, 09:33 AM
Hey, I want some fruit gingerbread too. Although I don't know what it is? What is it? Sounds like a warm comfort food.
I'm kinda bummed today. My husband left early this morning for a week. He is a contractor and they have a job a couple of hours away from home. He hasn't done that for a long while. Now I am home alone with two teenagers :shock:
How are you feeling today Rob, any relief yet?
Is sis there still, helping you out?
Please know that I am there in thought and in spirit. I look forward to getting on here every day and reading what you and sara have left for me. Wait, I just realized how pitiful that sounded. :o I meant, I get excited to see what is going on with my new friends. :scatter:

coltsfan
10-27-2008, 09:37 AM
Hey look, I finally evolved into a mammal! :rofl:

sara akhtar
10-27-2008, 01:57 PM
I'm still in the early stages of evolution Robyn - not even grown legs yet. Ahhh so that's why they are so weak they're really fins haha. It's not easy being a fish out of water you know!!!

OK here's some fruit gingerbread for your hips - got it? Mmmm deliscious isn't it? Do you think it's a little too spicy - too many sultanas? Try putting some butter on it - that's right. Enjoy :lol:

Well you see how sad we all three are Robyn - we all reply within 24 hours hahaha. And we have over 1100 viewings too - hope we're raising some smiles (and eyebrows lol).

Come on people join our conversation - don't be shy out there in cyber space. JUST KEEP YOUR MITTS OFF THE DREAM HOUSE AND YOU'LL BE SAFE :twisted:

sARAX

coltsfan
10-27-2008, 04:23 PM
We are a little sad aren't we? Does anyone else out there think we are a little sad?
I rather enjoy it myself. I can have fruit gingerbread and not gain a pound. I can have conversations with people that don't start with What's for dinner? Can I have some money?
And what else am I gonna do, we have a freeze advisory out tonight. I can't go outside. :wink:

rob
10-28-2008, 04:05 AM
Hello,

Got some sleep last night. Dr. say my B.P. is up, though i can't remember the numbers. Talked about monitoring it, and doing things to get it back down. I got an anti-biotic cream to stick up the old nose to moisturize it and help it heal. I'm so tired of this that if a red hot poker would fix it, I'd do it! Dryness is part of my problem. Still exhausted this morning. Going back to bed. Feel like I could sleep for a week. It's a cold and rainy day here. What exactly is Fruit Gingerbread? Sounds interesting.Thanks for all the encouragement, and for making me laugh ladies. Talk to you later. Zzzzz time again.

sara akhtar
10-28-2008, 12:49 PM
Fruit gingerbread is pure comfort food Rob - I made it especially for you so enjoy!

I feel fed up today! I can't use my left hand properly - the tip of one of my fingers has cracked on my right hand so thats got a plaster on it :cry: I'm feeling very tired and FED UP! I don't want to take any more medication so I'm not going to take it (until the middle of the night when I'll be crying for the diazapan hahaha)....I wish I could afford to give up my job because I am dragging my carcass in these days......winge winge winge

Make sympathetic noises please you two. Actually I think I'd be better if you just tell me to belt up and get on with it :roll: Oh to heck with it I'll have another peice of cake :evil:

Off to bed with a hot water bottle - it's almost 8pm - can't believe I'm up so late :shock:

And by-the-way if it makes you feel any better guys - it's almost down to freezing here in the UK :x

Rest well

Sarax

coltsfan
10-28-2008, 03:24 PM
Sara, will you please quit teasing Rob and I and just tell us what fruit gingerbread is? We are now hungry for something that we have never heard of on this side of the pond.
I would tell you to just belt up but it isn't in me. Just eat the cake and be happy. And take a feel good pill if you have to. It is better than the not sleeping. Speaking of sleeping. I had the best rest last night. That is sad because it was the first night that my hubby was away working. But the doggie didn't make a peep all night and he curled up next to me so I wasn't freezing. I think I was just so exhausted that I just crashed.
Rob, eewww, cold and rainy. Sounds like a good day for a book, a bed, and a cup of hot chocolate. We are cold and breezy. Wanted to stay in the bed, but you know, bills to pay, yada yada yada.
Off to the school for a choir program. Talk to you soon.
Robyn

sara akhtar
10-29-2008, 10:40 AM
OOOhhhh I love choirs - my youngest daughter is in a girls' choir and it's sooo lovely at Christmas when we go to lots of church and cathedral services and concerts. Who's in the school choir your son or daughter? What was the occassion?

It's been soooo cold here - had to spend ages de-icing the car this morning bbbrrrrr. One of my legs has been a bit achey and weak today so I think the anti-inflams must be really getting out of my system. I'm going to stick it out for a while longer though and see how bad it gets just so I can measure it against how bad it was 4 months ago.

Hope you are feeling a bit better Rob??? Haven't heard from you in a couple of days - hope you are OK.

Am I the only one who can't wait to snuggle up in bed at 7.30pm every night? I used to have a social life but now all I do is work and sleep :roll:

Oh well better go and stuff my face with fried chicken and then off to bed for me.

Sarax

coltsfan
10-29-2008, 06:54 PM
My daughter is in the high school concert choir. It was their fall performance. It was just wonderful. They have a concert choir and a show choir. They kind of mix and match with the two for the entire concert, so you get a little singing and a little dancing. We go again in about a month and a half for the Christmas concert. Just wish she was always hidden by some tall kid. :lol:
I understand the stopping the meds to see how you feel, just don't let it get to bad that you are down and very sick.
(and no, I would love to be in bed by 7:30, but they all make fun of me when I put my jammies on to get ready.)
Sorry about the cold, haven't had to deal with the de-icing yet, but I am sure it is coming. BOOO.
Well, I am exhausted, gonna try to get some sleep. Got my cup of hot tea almost gone.

rob
10-30-2008, 04:16 AM
Hi guys,

I'm doing so-so. Finally got some sleep thankfully. How is everything in the UK, and in Indiana? Funny weather going on here. Had a rain storm with 60 mph winds, then we had a day where it was almost 70 degrees. This morning, it's 25 and there's frost everywhere. The ocean is a steely grey color, winter is on the way.

I like choir music too. Every Christmas the Bangor Symphony has a concert with a full choir. It's really great music. We're celebrating Christmas this year at my parents house. The whole gang will be there this year. Well, it's off to bed, and more sleep for a few hours. Hope all is well with you ladies. Talk to you later.

Rob

sara akhtar
10-30-2008, 11:01 AM
Hi you two

I'm very very disappointed today - goin back on the meds :cry: I thought it may have all got better but today I've been hobbling due to the leg pains and muscle weakness coming back, I've got funny little lumps on my upper inside lip, my hand is getting useless due to the pain and swelling from my sore thumb (can't even turn the car lights on with the swivel thingy) and my nose bled whilst I drove home from work :roll: I just don't get it - I wasn't too bad until today and I have been off the anti inflams and painkillers for 6 days!!! So why today? It's 6pm and I'm off to bed to read and watch some TV. Sorry to be such a wet blanket :cry:

Chat tomorrow

Sarax

coltsfan
10-30-2008, 11:23 AM
Sara,
It must be the day. I have felt worse today than I have ever felt. I hurt everywhere and I just want to curl up in bed and boo hoo.
I am so sorry that you feel so bad. I know that you wanted to come down from the meds and be better. Get some good sleep and take some feel good stuff.
Hey Rob,
I am glad you have finally got some sleep. Maybe you'll be on an uphill swing now.
The only good thing about the cold weather coming is Christmas. I love all the family time we get. Sometimes, my mother in law gets to come home for a week. She lives in Florida now. The kids only get to see her once maybe twice a year. We'll see how it goes this year though, with the economy so bad.

rob
10-30-2008, 11:25 AM
Threre's no rhyme or reason to all this Sara. Symptoms just show up whenever they please, for as long as they want. It's all so unpredictable. I know what you mean about the pain, swelling, those lovely mouth sores, and of course, the nosebleeds. Don't worry, we're all wet blankets from time to time. Get some rest, and go easy on yourself. I'll talk to you later.

Rob

rob
10-30-2008, 04:00 PM
Hi Robyn,

I know you are not feeling well today. Just do what you need to do to take care of yourself. If that means curling up and stayng in bed, so be it. I know how you feel. Go easy on yourself, and I'll talk to you later.

Rob

P.S. Look at the bright side, you are now officially, a Ferret!

sara akhtar
10-31-2008, 01:15 AM
Hi folks

Had good sleep and feel more bright eyed and bushy tailed this morning. Top lip's a bit swollen but Hey it's cheaper than Botox :lol: TGIF. Teaching my Friday student this afternoon - 40 year old man who can't read. Just started with him but it looks promising! Below freezing again here so going to have to de-ice the car in a mo. Wrap up warm and give yourselves a big hug both of you. At least we have your election to look forward to :wink Who is it going to be do you predict?

I love Xmas too - not going mad financially this year. It would seem a bit obscene to spend loads of money when so many people are losing their jobs. My husband and girls love the whole thing - despite being Muslim :rofl: My Mum comes over too - but she only lives 5 mins away so we see her all the time. No novelty factor there then :twisted: My sister usually comes too - don't see her any other time so thats a bit of a chore :roll:

Right I'm off to work - scarf and gloves on. You two be good and take care of yourselves. Watch that windy weather on the clifftop Rob - need you fit and well to look after mine and Robyn's house :P Nearly weekend Robyn so you can have a lie-in tomorrow :lol:

Chat soon

Sarax

rob
10-31-2008, 04:54 AM
Coltsfan,

How are you feeling this morning? Hope you're doing better. Cold here this AM. Brrrr. in the 20's. One of my cats has a toothache, so it's off to the Vet we go. Have a good day. I'll check in later, and say hi.

Rob

KathyW1958
10-31-2008, 05:31 AM
Hi Rob,
Sorry to hear about your kitty. I sure he will feel better once he gets done at the vets and gets that tooth pulled. Keep us posted ok.

Hugs,
Kathy

coltsfan
10-31-2008, 07:25 AM
Hey Rob,
I feel a little better today, I think. Don't know if I have become more accustomed to the aches, but I don't want to go to a corner today. Could be because it's Friday finally. It's supposed to be nice this weekend too. upper 50s low 60s. Poor kitty. :( Did the vet make him/her better. I hate it when your pet is sick. Breaks my heart when my doggy is battling his allergies.
Sara,
no predictions from me, I am just ready to vote and be done with it. All the signs, the commercials, the news...
We usually go to my Grandma's for Christmas Eve dinner. There are about 35 or so of us total. House is really crowded but I love it.
Christmas Day, (after we see what Santa brought) we go to my parents later in the morning, eat breakfast, open gifts, then I cook dinner at my house for my husband's family, and anyone else who drops in.
I'll bet it is very interesting with two different religions.
Hi Kathy,
glad you came to join our sometimes crazy conversation.

rob
10-31-2008, 08:29 AM
Howdy all,

Haven't been to the vet yet. It's at 2:00 this afternoon. Funny how I get far more concerned about a health problem with one of my cats, than I do with myself. She'll be OK. This just started a couple of days ago. She's only about 8 years old, just middle aged by cat standards, and she's playful, eating and drinking, so she's not too bad off. Don't want to let it slide though.

Sara, I'm glad you're feeling a bit better. Teaching a 40 year old to read. Wow. I'm 40, and I think of all the of books I've read. Your student is going to have a whole new world open up. And it's better late than never! As for the Elections here, I think we're all getting a bit weary of the whole thing. In the tradition of keeping WHL politically neutral, I'll just say that I hope the best man for the job wins. All the divisivness and fighting is getting old to people on both sides of the political fence.

Coltsfan, if you're afraid to take a corner, just stay in the middle. It's a shorter trip in either direction from there. It's already shaping up to be a nice weekend here too. It was in the 20's last night, but now it's almost 60, and sunny. The water is as flat as a mill pond today. If it's not too windy, my father and I are going flying our R/C model planes tomorrow. He has a big old gas powered Piper Cub he built, and I fly a Helicopter I built last winter. it's great fun.

Kathy, thanks for the concern. The cat with the bad tooth is Sophie. She's pretty healthy otherwise, and still only middle-aged, so I'm sure this will be minor. When an older cat has a bad tooth, it can get serious, but she's only 8. We talked about favorite authors the other day. I'm going over to my parents house tonight to help them pass out candy to the kids, as they always get a crowd. The crowd is always coming, and going from Stephen Kings house, which is two houses down. He doesn't have trick or treaters up to the house, but he always has a huge display in the yard, and sponsors a couple of local halloween parties in Bangor. I'll be thinking of you! Boo!

Have a good afternoon, and evening ladies,

Rob

sara akhtar
10-31-2008, 08:37 AM
Hi Kathy

Great you could stop by - the more the merrier - please stay. Even though this thread gets a bit bonkers sometimes :rainbowafro:

Poor pusskins - how do you know it's a toothache Rob? Unless your cats are like my dog and can talk of course :P Freezing here today. Just finished work but going to go in and provide some staff training tomorrow for my assistant tutor :roll: . My dog is at the vets for her booster jabs tomorrow so she won't be too happy :cry: Im sure she thinks I just take her there for the fun of it :?

I just called the hospital to get the 5 week old blood test results and 10 day old MR scan results but she wouldn't tell me over the phone :x Got to wait for a letter - she says it's data protection but I don't get it because my GPs surgery tell me results over the phone. How annoying that she could see them on a monitor infront of her but couldn't tell me :bad-words: I hope it doesn't mean bad news - I was hoping they would say it's been a virus and it's on its way out. Can that happen for 4 months do you think? I think the after affects could linger don't you? Oh well nothing for it but to wait and see I guess :cry:

Have a good weekend everyone

Sarax

KathyW1958
10-31-2008, 08:48 AM
Hi Sara,
I know how frustrating it is to call and try to get results from tests only to be told that they can not tell you anything. I have had that happen to me several times. I hope that when you get the news that it turns out to be good news.

I can imagine how your dog will like the visit for the shots lol. I hate taking my cats to the vet, especially the female as she scrams the whole way to the vet from the time I get her in the cat carrier until I get her back home and out of the carrier. I mean lordy she fights going into the carrier with a passion. My male kitty, Stubby Tail, does not give me any problems at all. He is a real mild mannered kitty. Both of my cats are orange and white tigers with short hair and came to me as strays. Oh well.

Hugs,
Kathy

coltsfan
10-31-2008, 08:55 AM
Rob,
How cool that Stephen King lives so close. I love his books. That would be especially spooky at Halloween though.
We are set to pass out candy as well. There is a tradition in our town, going back to when I was a kid. I live in a very small town with just a four way stop in the middle. All the neighborhood kids get together and thoroughly toilet paper the four way stop. No harm as it always washes away in a few days and it keeps them all out of real trouble.
Sara,
How long to get the letter? Is this for the diagnosis?

sara akhtar
10-31-2008, 10:10 AM
Stephen King - Oh my- on your doorstep. What was the one about the horrible infectious disease called? You know the one where they were dripping snot everywhere? Ooooh it was nasty :shock: Robyn, I'm hoping the letter is for a diagnosis but I'm not holding my breath - you know what these doctors are like :roll: The secretary said she will speak to the consultant and hurry him along but that might mean I get it in one month instead of two :x Hoping it will be next week.

I'm being a miserable old crow and keeping my door firmly locked tonight - both kids out, hubby working late and me and the dog, Jazz, in bed with a hot water bottle. We get loads of horrible thuggy type teens knocking and being intimidating - we call them Hoodies here because they wear their hoods up to scare people :roll: I think maybe I'm just getting old and grouchy! (OK this is where you tell me I'm not old please).

So Rob and Kathy you two are cat people and Robyn and I are dog people - they say there's a difference don't they? I used to have cats so I must have had a personality change :D I hate it when my pooch is sick - I love her to bits. She is my baby. Hubby took her to have a shower and trim at the poodle parlour last Saturday and it took her 2 days to forgive us all :cry: She looks so gorgeous now though (smells a lot better too).

Keep us posted about Sophie Rob.

Sarax

BonusMom
10-31-2008, 10:45 AM
The palms of my hands get hot and very itchy, break out in little water blisters then they dry up crack and bleed. Very painful.

I have had this for years and was told it was "eczema". My daughter has eczema and it looks nothing like the itchy blisters I get on my hands. It's incredibly painful-especially when it begins to crack. I have often wondered if it was something besides "eczema".

I don't get any type of rashes on my face, but for the first time in years, I had a tan this summer. Now that I'm out of the sun, I am noticing bumps all over my shoulders. It doesn't look like acne in particular, but small red bumps.

Could these be AI related skin issues?

KathyW1958
10-31-2008, 11:16 AM
Hi Bonusmom,
My name is Kathy. I get the same type of rash on my hands and feet. It is called Pompholyx Eczema. Not all Eczemas are alike. I think as far as the bumps on your shoulders I have no idea. You will have to see a doctor about that. I am wondering if you are sensitive to the sun? There are a list of symptoms that they look for when they are checking for Lupus. You have to meet 4 of the 11 Criteria before they will even consider a Lupus diagnosis. You can go to your doctor and have them run blood tests on you to see if you may have Lupus or any of the other Auto-immune disorders and Pompholyx Eczema is an auto-immune disorder. I have several auto-immune disorders as you cansee by my signature. My Rheumatologist put me on Imuran for the problem with Eczema and that has helped me a lot. Welcome to the forum and I hope that you can keep posting. There are a lot of good folks that come in here and they may have more answers for you.

Hugs,
Kathy

BonusMom
10-31-2008, 11:20 AM
You can go to your doctor and have them run blood tests on you to see if you may have Lupus or any of the other Auto-immune disorders and Pompholyx Eczema is an auto-immune disorder.

Hi Kathy-
Thank you for the response. I also posted in the Newbie section "Interpreting Blood Tests" as I'm trying to make sense of the labs that I just received. Perhaps you will have some insight.......

KathyW1958
10-31-2008, 12:38 PM
Ok Bonusmom,
Let me go and check that out.

Hugs,
Kathy

sara akhtar
10-31-2008, 12:43 PM
Rob and Robyn what's the time difference between us all? I'm trying to work out if Sophie's been to the vets yet :mad: or if your still flying your chopper with your dad Rob :P Bedtime here. Catch up with you tomorrow.

Sarax

rob
10-31-2008, 12:57 PM
Hi Sara,

I'm home, and it's just about 4:00 EST right now. I believe there's a time difference of seven hours from the eastern time zone to the UK. Sophie has a abcessed tooth that needs to come out. Nov 10th is the appointment for that bit of fun. Other than that, she's quite healthy I'm happy to report. The sun is just about down, and I need to get over to my folks house to help. Sara, I believe the story you are referring to is "The Stand". A biological weapon that comes to be known as the Superflu gets out and wreaks havoc. It's a great story. One of King's best. Have a good night all, gotta run!

Rob

sara akhtar
11-01-2008, 07:09 AM
Rob

That's the one 'The Stand' it was sooo gross! You can tell SK that from me lol. Glad Sophie's doing OK - did the vet give her antibiotics? Jazz was not happy having her jabs this morning! Last week hubby took her for her new hairdo in his car and this week to the vets - she now hates his car :cry: She thinks something horrible is going to happen everytime she gets in it lol.

Hope you and Robyn had a good Hallowe'en - lots of kids with toothache this morning from all those sweets you handed out last night :D I've been working this morning - giving training to my new assistant tutor. It was very a productive session. Home to do some chores and stuff for uni now. It's very chilly here - it's a balancing act between saving on fuel and not freezing to death.

Stay cosy

Sarax

coltsfan
11-01-2008, 06:30 PM
Sara, of course you aren't old. If you are old, you'll never make it across the ocean for our rally at Rob's house. :lol:
Trick or Treat was so disappointing last night. We only had about 12 kids, but they were so cute!!!! However, I woke up this morning and looked outside. You will never believe what happened after I went to bed. We were toilet papered in the night. It was across the house, the fence, the bushes, everywhere. I am sure it was friends of the kids. A little harmless fun, but it took me about 20 minutes to clean it all up.
My puppy pouts when he gets a haircut too. Doesn't he know he looks so much more handsome when he's all clean and cut.
I agree, the Stand was gross. The Shining and Pet Semetary are my favorites though. Good and scary, but not disgusting.
Did you have lots of trick or treaters Rob? I'm glad that Sophie is healthy (except for the tooth). She is gonna really be made at you for that trip. :wink:

sara akhtar
11-02-2008, 02:39 AM
Hahahahaha you must have got such a shock when you looked out of the window Robyn! I love kids - I could even eat a whole one on a bad day :twisted: How did it go for you Rob?

Talking about SK novels has reminded me of how many I read years ago - I wouldn't enjoy them now but I certainly did then. I really love Phillipa Gregory at the moment - probably not of much interest to you two as she writes British historical novels. Very informative - she bends the truth a little but it makes great reading. She's a bit raunchy though - sometimes you have to put the book down and take a breather and have a quick look around to see if people are staring at you lol (or is that just me?) :oops:

Just thinking Robyn - when we move into the dream house, WITH OUR DOGS, I wonder if Rob's cats will mind at all :twisted: We might have to bring the Dog Whisperer in for a week until things settle down :wink: At least we'll have the big, strong, ugly, fat girl to walk them for us :D I'm starting to really take to that dear girl - I don't know what we'd do without her in our old age :lol:

I'm in pain today :cry: was last night too :cry: Got a muscle crampy type pain in the back of my left thigh which really hurts when I sit down and it touches the chair and last night my thumb pain was in my whole hand and up my wrist (like when the Dr hits a nerve) and my back hurt too - it all seems to be coming back like 4 months ago. Hope I get the blood and MR results this week - don't know where to go from here if they say there is nothing wrong with me because all the tests are clear :roll:

Does it sound really terrible to hope that my tests aren't clear? I'm not saying I want it to be Lupus or Myositis - both equally horrid diseases - but it will be difficult to be told that there is nothing wrong with me when I am in so much pain. Just a very small insignificant little virus would be nice - extremely treatable with a course of antibiotics and lots of chocolate. One of us has to be healthy to oversee the strong girl's housekeeping duties at the des res :wink: Don't want her running off with the silver or the radio controlled planes (or trying to escape).

Right I've got to go shopping - really don't feel up to it but it's hubby's b-day tomorrow and haven't got him anything yet. I'm working tomorrow evening so we are having birthday dinner tonight.

Take care - you will be snoring in your beds at the moment (if you have had a good night)

Saraxx

rob
11-02-2008, 04:50 AM
Good morning all,

Had a good time Halloween. Lots of kids, and adults milling around. Everyone finished up their activities early thankfully. Steve's house was pretty cool, as usual. I think he's out of town. My sister and her husband know him better than I do. Brother in law has been friends with him since they were kids. Many of his books take place in the fictional town of Derry, Maine. Many of the movies made from his books are filmed here, and my sister got to be an extra in the movie Pet Sematary. She was a nurse/EMT in the movie for about 30 seconds. She had great fun. My favorite book of his was the series The Green Mile, which wasn't a horror story at all. Actually, the best movies have been based on his non- horror books. Shawshank Redemption, Stand by Me, The Green Mile, and Hearts in Atlantis were great movies.

Didn't go flying yesterday, too windy. R/C planes, and to a larger extent, R/C Helicopters can be quite dangerous if they get away from you, so flying in bad conditions can be an accident waiting to happen. The blades on the heli are 5 feet from tip to tip, and will remove fingers, hands, whatever they hit if you lose control.

I know how you feel Sara about wanting a name for what is causing your symptoms. I certainly didn't want SLE, and MS. But I couldn't fight the enemy without first knowing what I'm fighting.

How are you feeling Coltsfan? Did you end up getting any of that good weather you mentioned?

I've always wondered what the difference is between cat lovers and dog lovers. Both of my sisters are dog lovers. Personality wise, one sister is a quiet introvert, the other is an in your face outspoken type, and I'm told I'm an extrovert, life of the party type, or at least I used to be. My parents are cat lovers and Dad is a party animal and Mom is a tea-totaler. Go figure. For me, the dog thing is related to two dogs that attacked me when I was a kid. I don't have a phobia, but I'm wary of dogs, and always will be. I just love cats. I find them facinating. My three cats have personalities that are very individual. Some people see cats as aloof, but I find most cats to be very social and affectionate.

Well, gotta go scrounge up some breakfast. have a good day all.

Rob

sara akhtar
11-02-2008, 02:04 PM
Well you are really educating us now Rob - I never knew Green Mile was an SK book or that Shawshank was based on one of his either! Green Mile is the one with the black guy in prison who has special healing powers isn't it? I've just finished Wise Woman by P Gregory so I'm off to bed to start another one - doing a book swap with my daughter.

My dog is suffering at the moment due to all the fireworks that go off here around 5th November for Guy Fawkes Night - she's petrified poor thing. We are trying to be very positive and upbeat with her to give her good energy - it seems to be working quite well. You would be cured of your wariness by her Rob - she's a very special dog. She is very kind and gentle - once when my girls were messing around doing press-ups the dog thought that the eldest couldn't get up off the floor and she put her body underneath her and tried to lift her up. Another time when I was linking my hands for my youngest to stand on to reach something off the top of the cupboard Jazz put her head under my hands and tried to help lift her up :) She is very tuned in to how people are feeling and although she is a shy reserved little dog she always tries to help us. I think I told you before that we rescued her from a dogs' home to help my daughter walk after her acident - I think she was sent to us as a Guardian Angel because she has brought us all much closer together.

You are so lucky to have family around you - it sounds such fun. You too Robyn - I love the sound of your Christmas day. I really wish I had lots of family. I have a sister that I am not close to and I used to have a brother but he died a few years ago - he was only 42. Hubby is one of 6 but they are scattered around the globe - MSN is a wonderful thing though. One year we all gathered in Pakistan - it was brilliant! We have 2 kids each now so it would be fantastic if we could all get together again.

I'm going to try and get some rest now because I start my new role as assistant manager of the learning centre tomorrow and I've had a bad weekend as far as pain is concerened. Maybe my letter from the hospital will come tomorrow and all will be revealed :roll:

Night night friends

Sarax

coltsfan
11-03-2008, 05:35 AM
Hey Rob,
Yes, we had a wonderful weekend weatherwise. Sunny and 70 both days. Supposed to be like that on Monday and Tuesday also, but then the bottom falls out and snow by Saturday. I did a whole lot of nothing this weekend. Hips and knees feel a little better, but hands and elbows still yucky.
My dad likes to fly the R/C planes as well. He is all the time out in the garage putting them together (or back together) and fine tuning. That is a HUGE helicopter. Bet it is pretty cool when you finally get the hang of it though.
Sara, I hope your test results come in soon. It will be a relief to have a name to put to it. Even better if you really could use chocolate as the meds. Poor puppy. :( My dog really hates fireworks too. And anything with wheels on it, unless he is in it. Barks like crazy at my sons bicycle. Give her a good scratch behind the ears for me.
Gotta run, have to go to work. Talk soon, Robyn

sara akhtar
11-04-2008, 11:25 AM
Dear agony aunt and uncle

OK I really need advice here folks - just called the DR and receptionist said that my notes say tell patient blood tests normal :shock: Still waiting for the MRI results but where the heck do I go from here because I am really struggling with the pain. It's weird because earlier today I was limping due to thigh pain and now I'm not - last night I was in excrutiating pain with my hand and could hardly use it but now it's not too bad (still can't use it properly but that feels like the normal state of affairs these days). I feel really confused - am I sick or not???? I know the pain is very very real but what if they don't find anything??? Does that mean I'm exaggerating it in my head??? I don't get it!!! AAArrrgghhhhh! I've really tried to push myself into being well but it's not working so far so I don't think I'm being self-indulgent. What shall I do now? Do I just wait for the Rheumatologist appt in a couple of months? I've asked if my GP can give me a call after surgery so I can ask him what I should do and I've asked for a copy of the results too - do I need them or should I accept that they should know if they are normal or not? It's not normal practice here to be given your blood results.

I think I'm sounding as though I'm wishing something bad on myself - I do want to be well but not sure how to be if this is 'normal'!

Sarax

KathyW1958
11-04-2008, 11:58 AM
Hi Sara,
I don't think that your illness is all in your head. There are folks with Lupus that are Sero-negative and it does not show up in the blood. I think that you have a right to request all of your lab results to take to the Rheumatologist with you. You should also right down everything that you can think of all your life and let the Rheumatologist know. I know I did that and that is how he pretty much pinned it down to the age or either 5 or 7 years old. There are other folks that come in here that are sero-negative. I am not one of them, but there are definitely some that are. I hope one of them comes on and posts. Let us know how your MRI goes ok.

Hugs,
Kathy

sara akhtar
11-04-2008, 12:08 PM
Thanks Kathy - I'll keep you posted.

xx

coltsfan
11-04-2008, 12:24 PM
Sara,
I agree with Kathy, get everything they will let you walk out with. Something is going on that is causing you so much pain, maybe the rheumotologist can figure it out as he/she is more specialized.
Keep your chin up ole girl. They will get to the bottom of it. Hopefully your GP will call soon and elaborate further. I hate when the nurse says the chart looks good. I want more details.
How is puppy today? Over the scare of the fireworks now?
Hubby have a good birthday? Did he get lots of presents?

sara akhtar
11-04-2008, 12:51 PM
Jazz and hubby both happy puppies :D not so many fireworks this year which is odd - maybe folks not wanting to waste money this year. Pups coping brilliantly with the few bangs and whooshes that there have been so far.

Rhuematologist must have sent results to the GP so he must have said they are fine :roll: Wonder what the MRI scan will show up.

Thinking back over last 4 months symptoms:
[/list]
muscle pain - bloods showed inflammation (are these now clear because of the high dose anti-inflams?)
muscle spasms in back (diazapan worked wonders)
pain in thumb (sounds daft but this has been the worst pain)
partially collapsed lung (better now)
hand rash (worst on sore thumb)
mouth ulcers
cold sore (horrid - can't play my clarinet)
disturbed sleep
oooohhhh soooo tired!!!!

Poor me :roll: What a moaner - getting on my own nerves now :D

Saraxx

coltsfan
11-05-2008, 10:34 AM
Hey Sara,
I was just thinking about you and wondering how you were doing today? Any relief yet? Last night, my daughter made a pan of really rich and chocolatey brownies. I thought about you and wished I could send you one to smother your pain with. Since I couldn't, here is the wish of gooey chocolate for you..... :D Yummy, don't you think.
Robyn

sara akhtar
11-05-2008, 10:54 AM
Yum yum Robyn - I love comfort food.

Just collected 'normal' blood results

ESR 22 ? Mild inflammation?

Rheumatoid factor - 0.01 ? borderline Dr says?

got hundreds of other results here but they are the only ones he has written a note on - any ideas what I should be looking for

XX

sara akhtar
11-05-2008, 11:11 AM
PS - will the fact that I'm on max dose anti inflams have affected the results?

KathyW1958
11-05-2008, 11:27 AM
Hi Sara,
I think that that will affect the ESR and a couple of the other tests. Maybe someone else would know more and they will post.

Hugs,
Kathy

sara akhtar
11-05-2008, 11:50 AM
Thanks Kathy - I'm thinking that even though the GP thinks these results are normal perhaps the rheumatologist will put these slightly raised levels together with the other stuff and come to a conclusion. My lungs have cleared up with the anti inflams and I just think it must have collapsed for a reason because I haven't had a cold for about six months. Also the rash is sore on my painful thumb so that must be connected to the pain I think but the rheumy and GP don't think it's connected - frustrating isn't it? My thigh pain comes and goes and when it's bad I limp badly - thing is it comes and goes within a 24 hour period! I think it could be myositis - have to wait for the MRI result I guess - if that's normal then I don't know what to do next really. The rheumy will want to do the electric needle thingy and muscle biopsy yuk! Thing is if it's only in early stages then I want to kick it in the head right now and not wait until it gets worse before they do anything. I want my life back!!!!!

Sorry to moan Kathy - hope you are feeling good today?

Sarax

KathyW1958
11-05-2008, 02:36 PM
Hi Sara,
I am sorry that you are having so many problems. I don't think that you are moaning at all. There is something really wrong and you do not feel well. I think that the Rheumatologist will take into consideration about the test results and the fact that you are actively on anti-inflamatory medications. A person's lungs do not just collapse for no reason at all. You could have had Pleuresy that caused the lung to collapse and that is seen in Lupus sometimes. I hope that the Rheumatologist can figure out what is happening and treat you and get you better. I have had the pin test and the electrode test done to test for Neuropathy in my legs and it was not that bad to go through. It sounds worse then it is. I never had a muscle biopsy done, but I am pretty sure that they numb the area up so that you will not be to uncomfortable. Sara I sure hope that they can figure out what is happening. I will have you in my prayers and let us all know what the results of the MRI are ok. Please keep posting and I will try to help as best that I can ok.

Hugs,
Kathy

Kcflannery
11-05-2008, 03:01 PM
hey there,
I can relate to a lot of your symptoms (mouth ulcers, feeling ill, fatigue, joint pain and inflammation) and I know how awful you can feel. The thing about Lupus is it's such a hard disease to diagnosis because it has so many common symptoms with other diseases (as people have told you). My advice to you is to ask your rheumatologist whatever questions you may have and to always be open with him/her.
Keep your head up...the road may seem long but it does get easier.
Kat

sara akhtar
11-06-2008, 12:25 AM
Thanks girls

I checked the copy of my results and the GP obviously only glanced through them because there are about 40 of them! Two other things were flagged up- one high and one low - and I have Googled them and they are indicators of inflammatory or muscle wasting diseases such as Myositis and Muscular Dystrophy.

I am guessing you are in USA so hope you are sleeping well both of you. I'm just taking the kids off to school then myself off to work.

I hope your new Pres serves you well.

Saraxx

coltsfan
11-08-2008, 01:07 PM
Hey Sara,
How are you doing? I haven't heard from you in a couple of days, thought I would check in. Are you feeling any better than you were a couple of days ago? When is your rheumy visit?
Robyn

sara akhtar
11-08-2008, 02:18 PM
Hi Robyn

How're things with you? I'm in so much pain today I don't know where to put myself. I can't just carry on waiting for the docs to make a decision in their own time - I'm going to make an appointment to see my GP and tell him to get me back to the Rheumy ASAP. I have to be proactive - I want my life back now! All I do is work and come home to bed - it's miserable!

A year ago I used to wear my pedometre and make sure I did 10 miles a day - now I struggle to make the stairs some nights. This is riddiculous - I'm 45 and I feel as though I'm disabled without even knowing why! I had another look at the blood results I insisted I got from the GP and they are old ones that he sent me for not the most recent that the Rhuemy had done so I'm none the wiser.

The rain is coming down in torrents here tonight - bonfire weekend has been a washout for families with little kiddies - such a shame.

What have you been up to this weekend - tell me you've been doing something nice to cheer me up :D Hope your aches and pains have not been too bad.

Off to bed now - the back of my thigh is too painful to sit any longer - need to lie down.

Sarax

KathyW1958
11-08-2008, 02:36 PM
Hi Sara,
I am sorry to hear that you are having such a terrible time. It is not right that the doctors do not want to listen to the patient and work their hardest to figure out just what is going on. I don't blame you for demanding to see a Rheumatologist asap. Everyone has the right to feel well and to find out what is going wrong with them when they are ill. I hope that you can get in to see the Rheumatologist and that the Rheumatologist can sort out what is happening with you and have some answers for you.

Hugs,
Kathy

coltsfan
11-09-2008, 06:44 PM
Hey Sara, there you are. I was worried about you. Great Idea. Call the GP and tell him to get moving.
I have had it kinda rough with my hands hurting the past few days and today I am just exhausted and achy all over. But I have stayed in pjs and did mostly nothing all day. It was wonderful.
Yesterday, my hubby and I went to the city (Indianapolis) to a wedding reception. A nice fancy brunch. It was almost like a date. :wink:
We left the kids at home, so it was just the two of us. Then yesterday evening, all of us went to dinner with my nephew and his wife and their 3 month old baby.
Sorry about the rain, that just makes you feel even more yucky.
Talk to you soon,
Robyn

lainy
11-09-2008, 08:41 PM
HI Sara.

Sorry to hear about all your troubles.
I was interested to hear about your hand rash - is it just very small dots all over your hands?? sore? it sounds exactly like what i get - which the doc seemed very confused about - i should have mentioned it to the rheumy,

anyway hope you are feeling a bit better today?

elaine

sara akhtar
11-10-2008, 02:30 PM
Yes Elaine that's exactly what it's like - my docs keep saying it's not related but I KNOW it is! It flares up mostly on my painful thumb when it swells up - prob is drs don't see it when it happens like that. It dries into little holes of peeling skin and the tips of my fingers are a bit wrinkly - does this sound like yours? Keep me posted Elaine.

Hi Robyn - sounds like you had a romantic weekend :wink: Sorry to hear about your ouches - a PJ day sounds wonderful. I've got people over on Saturday - first social thing I've attempted for nearly 5 months! Don't know how it's going to go but I'll dose myself up and give it a try.

Kathy - thanks for your kind words. I called my GP today and have an appt on Wednesday toget him to rush my next rhueumy appt along. You're right we do all have a right to know what's wrong with us and I'm definitely going to be more proactive in my approach. I'll let you know how it goes. Hope you are well Kathy.

Rob if you are reading this thread -Hi hope you are doing OK.


Sarax

coltsfan
11-12-2008, 06:37 PM
Hey Sara,
How did your doc appt go today? (it was today, wasn't it?)
Robyn

sara akhtar
11-17-2008, 01:49 PM
Hi Robyn

Yes it was - consultant appt letter came through on the same day! 4th December. Can't wait - hope they get it sorted - I'm sooo fed up!!! How are you - what have you been up to? We had a get together at our house on Saturday for my daughter's 18th which was really nice as I haven't seen anyone for months. Have you got snow yet?

Sarax

rob
11-17-2008, 03:43 PM
Hi,

Just thought I'd say hello. It's the same stuff here. Good days, bad days. New mind boggling symptoms almost every day. My cat, Sophie had not one, but three teeth pulled. She was not a happy camper. That was a week ago, and she's back to her old self, and doing well. I'm very happy about that.

Sophie, and my two other cats are fighting a war against the mice. Every year when it gets cold, the mice look for warmth. That means inside. I seal this place up tight every year, yet they still get in somehow. Right now, the body count is five mice. A decisive victory for my courageous feline commandos.

I hope you guys are hanging in there. Sara, you sound so frustrated. I wish it could get a little easier for you. Coltsfan, there's no snow here yet. It's cold though. We are in a rather odd climate in this part of the state. We have cold winters, but we don't always get heavy snow that lasts. We could have a white Christmas, or not. Go about 20 miles inland, and it's like Colorado. Tons of the white stuff.

I was supposed to see my new Rheumotologist last week, but it had to be re-scheduled. It's next Thursday. I hope the effort, and long drive is worth it. My last Rheumo was, shall we say, fired in a rather public way. I don't have much faith in the medical community sometimes.

Anyway, how are you guys coping overall? It's easy to get into a bad state of mind with this disease, even if you have not been diagnosed yet. I hope you are OK. Gotta go. I'll talk to you later.

Rob

sara akhtar
11-18-2008, 12:39 AM
Hey Rob

Sorry to hear you are feeling so unwell lately - can't you get someone to drive you to see the rhuemy? At least Sophie is back in action. My sister is a cat person and she reckons that if cats bring 'goodies' to you they are offering a gift - you have 5 gifts so far but wait 'til those mice have to escape the snow. You'll be like the Pied Piper! I haven't seen a white Christmas since I was a kid - actually as I remember I was not at all impressed because I couldn't ride my new bike that Santa brought! You are right I am very frustrated Rob - I am in constant pain now, there is no let-up. If I stopped the NAIDS and pain-killers I wouldn't be able to walk at all. I have lost some of the function of my left hand (thank God I'm right handed) and I am so sick of it all. I'm counting the days 'til my next rhuemy visit on 4th Dec - I think I'm going to do something drastic like refuse to leave his office 'til he sorts this mess out. Maybe you'll see me on Sky news being dragged out by security men :wink: If he tells me to come back in 3 months again I don't know how I'll cope to be honest. Still draggin myself into work everyday - feel like lying in bed for the rest of my days but I guess then we'd all starve to death :roll: OK I'll stop moaning now. You all take care. Sarax

coltsfan
11-18-2008, 05:32 PM
Woke up this morning with a thin layer of snow on the grass and on my car. :o
Rob, we have the same problem. Our house is old and you can't plug up all the holes well enough. Each year as it gets colder and the farmers begin the harvest, we get a few mice. Unfortunately, don't have a cat, and my terrier just whines at them. Have to get them the old fashioned way.
Sara, I am so sorry that you feel so badly. I was beginning to get worried about you as I hadn't heard from you in a while. I am glad you got the appointment though. Hopefully they will be able to really help you feel better.
I haven't been doing ANYTHING exciting. Stay covered up with a blanket and a good book. Too cold to do much else.
Gotta run now. Bath time for the kids. Talk to you soon,
Robyn