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View Full Version : Not exactly what I wanted for christmas



snowbear
12-20-2008, 04:08 AM
Hello

following the great combination of a miscarriage, a sunny holiday and a lot of stress I've been off work for the last four months with an increasing range of problems that I didn't have previously - including breathing problems chest pain, pins and needles, joint pain, anaemia and and interesting facial rash and getting increasingly frustrated with the medical profession while they try to work out what is wrong.

Despite the fact I have a close relative with Lupus/ MCTD and Hughes syndrome, a history of autoimmune problems in the family and an ever growing list of symptoms that get longer each visit to my doctor I've had to fight to be listened to and to get a referral to a specialist.

I've been told everything from its depression - when I don't feel depressed ( I had to get my husband to come along and say I live with the woman and she's not depressed before the GP would listen), when I couldn't breathe and had chest pain - before they looked at an x ray it was suggested that may be you are hyperventilating from stress, 'its a virus' when the fatigue was enough to knock me out, 'its carpal tunnel '- when I started with tendonitis, and my favourite from a haemotologist who tried to work out why I had anaemia, B12 deficiency 'I haven't a clue what's wrong' :roll:

I can tick all the boxes on trigger and risk factors and the inital blood tests, symptoms, family and medical history all indicate an autoimmune problem and even my GP has finally asked is it SLE and arranged for me to see a rheumatologist after christmas (good job it wasn't anything to serious......)- but will anyone call it .... well not yet so I'm here looking for information and a little support while they work it out

:painting:

sits_inthe_corner
12-20-2008, 04:47 AM
Welcome snowbear

You've found a great support site here. I'm not diagnosed .... not sure if I ever will be at this point.

I'm 48 yr old female. My mother had lupus and my sister has been diagnosed. I've had rashes and other symptoms since I was in my late teens, but no one ever thought to check me back then.

I've had a couple of possitive ANA tests and a couple of negative over the past few years.

It's very frustrating to try and get the doctor's to listen let alone do anything.

Best thing I can say, is get stubborn, keep at them, keep going back. Once a week or twice a week. Specially when you are in pain.

For me it was the swelling...I was going twice a week begging for them to find out what was wrong and to do something about it.

I'm now on a combination of arthrotec 75 and plaquenil, which is working well for me.

I'm sure the others will be along soon to add their welcomes...

Glad you found us.

Angel Oliver
12-20-2008, 04:49 AM
Hi and welcome!!

Oh i am so glad you found this site. I am so sorry to hear of all your terrible heartache and the ignorance and stress you have been through and are still going through. I am also new to this site and totally understand the frustration you have to go through on a daily basis. I am was diagnosed with a nervous breakdown.....then when that went on too long they called it ME....then derpression.....now Lupus, but awaiting blood work. You need to know ''YOU ARE NOT ALONE!''. I am so happy you found us here as all the people here fully understand, are loving, supportive and will help you with any questions i am sure. Im sure you will meet lots of people who will help here. You keep as strong as possible and take one day at a time.My name is Angel and i understand.xx

Love
Angel.xxxx

snowbear
12-20-2008, 09:00 AM
thanks :)

I'm glad to find you. After weeks of feeling ill and miserable and going through complete shock and every emotion under the sun i'm finally getting my head around things.

The irony is not lost that the one time when I really needed a doctor to look after me and be supportive I've had to argue my corner and be pushy to the point I feel exhausted just dealing with the medics and I know I've not got too far yet. The worst thing at the moment is my brain is foggy - I can't remember half of what I need to. I phoned up my sister this morning and asked if it was 'normal' to put the cornflakes in the fridge.

My sister has just been through 4 years of exactly the same diagnostic fun and games so its a familiar path. She's currently being treated by a rheumetologist for a condition that last year he told her she didn't have and is completely exasperated by it all. I just didn't think a few weeks ago I'd find myself walking the same road.
love
SBear

sits_inthe_corner
12-20-2008, 12:34 PM
My sister had just had her 5th miscarriage when they finally diagnosed her with lupus. My mom passed away before my sister was diagnosed.

She now has two healthy happy teenage boys. She's been in remission for many years, and I hope it continues for her.

I think every one deals with brain fog ... lol caught my husband pouring pepsi in his coffee the other morning...yuck.

snowbear
12-21-2008, 05:39 AM
caught my husband pouring pepsi in his coffee the other morning...yuck.

Mmmm tasty - I was thinking of starting the alternative lupus recipe book for all those not so yummy accidental cooking mistakes I've made lately

rob
12-21-2008, 06:08 AM
Hi Snowbear,

Why is it that the default position of Dr's and Rheumo's in this situation is always "Oh, You're Just Depressed"? These people are supposed to be intelligent, but in my case, I'm the one who ended up doing all the reading and research in order to obtain a diagnosis. Intellectual laziness is the only thing I can think of for it being this way. And last I checked, it took a Psychiatrist/Mental Health specialist to diagnose someone with depression, not an M.D. or Rheumo. Sorry, I tend to grab a soapbox and rant when this subject is brought up.

This is a road you don't want to be on, I know. But look at the positive side, you are taking control and being an educated and assertive patient. That can be really tough for alot of people to do. You need to be an advocate for yourself, and it sounds like you are doing that very well.

Cornflakes in the fridge, too funny. We had a thread a few months back about all the goofy mistakes "lupus fog" can cause us to make. I actually got up one morning and grabbed what I thought was toothpaste and proceeded to brush my teeth. It tasted awful, and I realized that I was brushing my teeth with Preparation-H. Granted, Prep-H and toothpaste are both useful items, but they are hardly interchangeable. Sometimes, you just have to laugh. Whenever I can't find my capn' crunch or ritz crackers, I just automatically look in the fridge. I once put a bottle of windex in the freezer. Fog can be terrible, but it can also be funny sometimes. BTW, welcome to the group!

Rob

snowbear
12-21-2008, 01:36 PM
Hi Snowbear,

Why is it that the default position of Dr's and Rheumo's in this situation is always "Oh, You're Just Depressed"? These people are supposed to be intelligent, but in my case, I'm the one who ended up doing all the reading and research in order to obtain a diagnosis. Intellectual laziness is the only thing I can think of for it being this way. And last I checked, it took a Psychiatrist/Mental Health specialist to diagnose someone with depression, not an M.D. or Rheumo. Sorry, I tend to grab a soapbox and rant when this subject is brought up.

This is a road you don't want to be on, I know. But look at the positive side, you are taking control and being an educated and assertive patient. That can be really tough for alot of people to do. You need to be an advocate for yourself, and it sounds like you are doing that very well.

Cornflakes in the fridge, too funny. We had a thread a few months back about all the goofy mistakes "lupus fog" can cause us to make. I actually got up one morning and grabbed what I thought was toothpaste and proceeded to brush my teeth. It tasted awful, and I realized that I was brushing my teeth with Preparation-H. Granted, Prep-H and toothpaste are both useful items, but they are hardly interchangeable. Sometimes, you just have to laugh. Whenever I can't find my capn' crunch or ritz crackers, I just automatically look in the fridge. I once put a bottle of windex in the freezer. Fog can be terrible, but it can also be funny sometimes. BTW, welcome to the group!

Rob

Hello Rob

my sister is a clinical psychologist- she was outraged when the GP tried to class it as depression and she certainly is qualified to judge. I don't think i can post exactly what she said as it would violate the terms of service but its summerised as get a second opinion and a new doctor.

You have no idea how good it is to hear I'm not the only one. I am 40 years old and suddenly I can't remember names of friends, I thought I had another 30 years before I had to worry about forgetting to change out of my slippers before going shopping :silly: but I'm learning the value of post it notes and not to get to frustrated with myself when I forget why I went upstairs for the third time in a row. I tell myself the exercise is always a good way to lose weight and take the pressure off sore joints . :D

sbear

DrinkofWtr
12-21-2008, 07:01 PM
Dear Snowbear:

I'm glad to know I am not the only one who has concocted "yummy" lupus recipes. They are usually lacking an ingredient or two that should have been added, but occasionally they have baking soda for baking powder or some other substitution that doesn't mix with the recipe.
The garbage disposal has eaten them more than once.

Saysusie
12-22-2008, 09:33 AM
Hi Snowbear;
I see that you are being well taken care of here by our members. I just wanted to pop in and add my welcome to those you've already received.
I had to chuckle about your "post-it" notes as I've gotten to the point where they don't always work for me! I have to program things in my computer and on my phone, write them on a calendar and post them on my mirror (all of this for ONE thing that I need to remember). So, don't feel alone with your memory issues. I've gotten up, gotten dressed, gone out to my car and then, I have completely forgotten where I was going. I've sat in my care for 10-15 minutes trying to remember. Finally, I go back in the house. Sometimes I remember, but more often than not, it never comes back to me! :lol:
Welcome to our family. I am glad that your husband and your sister are there for you to help you to be aggressive with your doctors and to make sure that you are listened to and treated appropriately.

Peace and Blessings
Saysusie

KathyW1958
12-22-2008, 11:22 AM
Hi Snowbear,
Welcome to the site. My name is Kathy and I have SLE Lupus. I am sorry to hear the way the doctors are treating you. Believe me you are not alone. A lot of us have been through the same thing and some are still going through it. You have to make the doctors listen to you or they will brush you off every single time and that is sad. Do you have Pernicious Anemia? Did they decide if you have a B12 deficiency? I am just wondering is all, because that is what I have also been diagnosed with last May.

Hugs,
Kathy

Danica01
12-22-2008, 01:12 PM
Hello snowbear!!!!! I am so happy you have found us and you will be wrapped in love and support!!!! I am so sorry you are struggling with the doctors at this point. I wish I could tell you that gets easier , but it doesn't :( We have to be our own advocates 90% of the time and sometimes we have to educate the doctors :wink: Just keep your head up and keep pushing through this! We are all here for you!!! The brain fog is definatly something we all battle with :? I actually will put things I need in the fridge on purpose because that is where everything ends up :!: Hang in there and I am sending you happy thoughts and gentle hugs! Welcome :angel:

:x-mas:

snowbear
12-22-2008, 01:44 PM
I had to go for a schilling test last month - anyone else had that? - they handed me a large plastic bottle and told me it was going to be 'my new best friend for 24 hrs' so I asked if I was expected to take it to parties and what did it like to drink, but as i'm still waiting to see 'my favourite' :twisted: haematologist to get the results so the jury is still out on the b12 and pernicious anaemia. At this point nothing would surprise me. (well except a really helpful intelligent medic)

it was nearly socks in the toaster and bread in the tumble dryer today because my daughter interrupted my train of thought... I think I shall try to remember that one for my autobiography.

I'm still getting over the delight of going to my works do for a few minutes , using a stick to stop me keeling over, feeling like five day old semolina only to be told i looked 'blooming'. I feel worse than I ever have in my life and yet I have never 'bloomed' in my life before. This is such a puzzling illness. must be that lovely rosy facial blush I've been wearing. All natural too.

Happy thoughts I'm trying to surround myself with those- I organised christmas, the tree is up, the food came by delivery as did the presents, the duck is on the freezer, santa is stashed at grandma's so the kids don't find the presents, the inlaws are in new zealand, I'm going to the theatre as my treat, and my husband likes cooking.

if I can find a way to stop myself tearing the heads of loved ones when I'm too tired to think then it will be perfect. This is going to take a lot of work though. i keep finding myself feeling so angry. Mainly at me for not having the energy to do even little things.

sits_inthe_corner
12-23-2008, 06:09 PM
Oh snowbear

I'm all out of nerves for dealing with my brother. Johnny sad sack. I could just scream.

He calls and goes on for three hours on the phone about family and the importance of it. Then he asks me for my other brothers phone number which I've given him many many times...well I finally snapped.

In ten years he has NEVER called my brother or visited my aunts or uncles...grrrrrrrrrr.

Now he has arrived for three weeks....and I've already had my fill of him. I really don't know how I'm going to get through xmass dinner with out shoving stuffing up his b um and shoving him in the oven.

Sigh...fa la lala la lala la la

Family... :D aint it grand...

I promise to take care of myself over the holidays, to rest when I need to, step back when I need to, and not to stuff my brother in the oven cause santa doesn't smile kindly on that type of behavior :lilangel:

snowbear
12-24-2008, 05:27 AM
Oh snowbear


Now he has arrived for three weeks....and I've already had my fill of him. I really don't know how I'm going to get through xmass dinner with out shoving stuffing up his b um and shoving him in the oven.



ah family, got to love them - nearly did that to my husband last night but it was a good job we were no where close to the fridge - he took us to London to the theatre last night but insisted on parking a mile from the theatre and then tried to walk in the wrong direction because he 'lived in london for years' and couldn't believe he was wrong. I had a hissy fit and hailed a cab. :mad:

On the good side he is finally understanding just how difficult life is at the moment.

sits_inthe_corner
12-24-2008, 12:47 PM
Gentle hugs to ya snowbear

Hope you are not too sore today from your outing....and MERRY CHRISTMAS!

snowbear
12-24-2008, 03:12 PM
this is one of the few occasions when I'm glad not to be able to feel my feet (they go numb sometimes).

Merry Christmas all (santa is due in just under two hours) and I'm off to bed :D

Angel Oliver
12-25-2008, 12:01 AM
Oh Snowbear,

I had a little chuckle at your post. Not funny...but sooooooooo funny! Merry Christmas and i hope you dont put him in the oven today hehehhehe. Hope you are feeling ok, i bet your are achy if you had to walk a distance, hope not though.

Love Angel.xx

Danica01
12-25-2008, 10:11 AM
Merry Christmas Snowbear!!!!!

:x-mas:

snowbear
12-26-2008, 08:06 AM
santa was very good to me this year though he brought me lots of chocolates which my GP 'you must lower your cholesterol' will hate .

I'm not sure I currently appreciate my Dad's gift though... a House DVD and t shirt with 'its never lupus on it'....

:?

Danica01
12-27-2008, 12:49 AM
A little understanding goes a long way when it comes to our issues :wink:



quote="snowbear"]
Oh snowbear


Now he has arrived for three weeks....and I've already had my fill of him. I really don't know how I'm going to get through xmass dinner with out shoving stuffing up his b um and shoving him in the oven.



ah family, got to love them - nearly did that to my husband last night but it was a good job we were no where close to the fridge - he took us to London to the theatre last night but insisted on parking a mile from the theatre and then tried to walk in the wrong direction because he 'lived in london for years' and couldn't believe he was wrong. I had a hissy fit and hailed a cab. :mad:

On the good side he is finally understanding just how difficult life is at the moment.[/quote]