I am giving up now

Hey guys,

As some of you well know I have asked 4/5 times now about a GI appointment since my last scope 2nd Dec where I gave my consultant a hand written letter asking some questions that he said he would discuss with me in clinic.

I got an email from one of my gastro nurses last friday saying they were having a meeting this week to go through my case and I would be hearing from them!

I heard from them alright. My next appointment is June 1st at 1615hrs.

I have mailed my gastro nurse and said I have had enough now and am tired and drained and dont have the energy to do this any more. I will go for my remi regularly, take all the meds I am on but would much rather my GP managed things for me from now on because at least I am not bounced about from pillar to post. I have said I get the message loud and clear. I know I am not an urgent case (my gut isnt going to rupture) but I want some better stability and I dont think that is too much to ask for. I have told the gastro nurse in the past that if this isnt possible then I need to figure out a way to manage. So I have been reasonable all the way through and dont feel I am asking for the sun, moon and stars here.

I phoned the gastro clinic to cancel the appointment and she asked me why so I told her. She wanted to put me through to my consultants secretary immediately but I said there was no point. I knew he was busy etc and I am tired of asking and just to leave it. She said she was going to notify the secretary anyway and I said that was her perogative.

I have had similar problems with Rheumatology in that they sent me an appointment for May 09 and I am supposed to be seen April 1st. When I phoned about that I was told they may not be able to move it as I wasnt the only patient! I pointed out that I was going by the registrars request of seeing the specialist nurse around April 1st AND then the reg again 8wks later. The app in May for the nurse is 2wks before I would be due to see the reg again (if that makes sense) and I am supposed to be settled back on Methotrexate by then!

So basically I just dont see any point in continuing to put myself through this hell in constantly having to fight my corner and constantly ask for the "appropriate/right" thing!

I rang my GP surgery to see if I could see him this afternoon and have been told I have to ring back at 2pm and see if he can fit me in as he is fully booked. I have an appointment booked for Friday week so will leave it til then as its unfair to put him under pressure.

As I said "I am giving up now".

No one should have to go through anything like that. Isn't it easier to control a disease when it isn't severe, then wait for a person to be critcally ill just to get an appointment? How bad do you have to be to get an appointment in a reasonable time frame? Good Luck, hang in there, it has to get better.

Aww Soup!

My heart went out when I read the title of this thread; then when I read that it was from you my heart just lurched!!! I know things must have gotten real bad for you to get to this point 'cos you've always been so strong.

I really know where you are coming from on this. That's why I haven't been around much myself. I am so sick of the whole damned thing. Last time I saw my doc she was going to call my GI and get back to me. That was about four weeks ago. I couldn't be bothered ringing up her offices and finding out what happened. Obviously I am not a priority here either.

So I've just been plodding on and getting through each day as best I can. I take my pain meds, my anti-nausea and anti-D tablets, eat antacids like candy and all the rest but I feel like I am getting nowhere. Problem is that we need those damn docs to make progress eh?:yrolleyes:

Don't give up. You are going through a rough patch (have been for some time) and you are simply worn out. That's understandable. But if people like you don't stand up for yourselves, what hope do the rest of us have? Insist on an earlier appointment with your gastro doc. Tell them it's not good enough. As Mommy1st says, it is best to get on top of it when it isn't an emergency.

I dont think it is unfair to ask for an earlier appointment with your GP either. If he can, he will fit you in... you need the support if nothing else. Why are you less worthy of an appointment than anyone else?

I've been in hiding and haven't had the energy to post but I really felt I had to crawl out of my hole and answer you here 'cos you've been so supportive to me in the past. I hope I've helped you a bit in return. Hang in there Jan. Just take it day by day. I am thinking of you.

Thanks guys for your comments/thoughts.

As I have said its not just gastro but rheums too. On top of that I had to fight from beginning Nov til last week to see a dietitian again as my previous one left the team and they kept "forgetting" to contact me or mention I had phoned yet again.

In the end I had to see a completely new dietitian last week and trawl through my whole history with her. She in the end says I am doing everything right and she wants me to see my GI and she will contact him herself. If she couldnt contact me in the first place how the heck is she going to manage that?! What is point in doing it when several folk including me have contacted my GI and I am still no further forward.

I went to my surgery this afternoon and said to the girls at the desk including the one I had spoken to earlier in the day that I knew my GP was fully booked and they all agreed. So I handed in a letter to him outlining my situation and saying I would see him tomorrow week as planned. I explained the situation to the girls at the desk and no one offered to get me in to see my GP so why should I have to push yet again for something I should be able to ask for without a song and dance?

I really honestly dont want to know any more.

Its not about waiting 6mths for an appointment its about constantly "falling through the net" on every single front in every single clinic I attend and having to constantly chase and ask about when I am next to be seen.

I really just dont have the physical or emotional energy to continue with this on top of everything else I have going on. So it stops now. That means no more clinic appointments for me and as few GP appointments as possible. I am tired to the core of trying to make myself heard. Tired of going over the same old ground and tired of having to push myself to the front and folk thinking I am wasting their time or am making a mountain out of a molehill.

Thats it in a nutshell..

If you honestly think that your GP can handle your health for you, then I guess it's fine to give up on your doctors. Just don't give up on yourself! I will think some good thoughts for you.
(You might want to keep your June appt, just in case you find yourself needing it.)

I am quite confident you know much more about your condition and what you need to treat it, than any of those specialists. You will need them for an occasional test or procedure.

If your GP is a good one, you both should be able to handle this with all you both have learned. You need to give yourself more credit and trust your own judgment.
You have been dealing with this much longer than many of us.

Your GP will not let you get too far out of line. I like the "Pillar to Post" thing. You Brits have a way with words that crack me up.

Best Regards

Dan

Oh dear soupdragon. You're probably hating me for being able to see the same guy privately

Sorry you're having such a sh*t time of it.

don't get discouraged My dr always said if you're sick just show up on my doorstep. I've never done it but I've gone to the ER when I don't know what to do anymore and they usually get you in to see your GI dr.

I understand how you feel soup. I'm just about there myself. I hate to say it, but you may be right in a lot of ways. I'm afraid practically no one physician-wise is going to care about anything but extreme cases and complications. I see it every day, and I know you do too. The doctors don't care about a crohn's patient who's suffering and having a hard time getting through day to day life, but a crohn's patient needing a resection or who's got a bladder/bowel fistula practically has the doctor's pager number. Of course they're all the same patient, just at different times.

It's no different for other problems. Blood pressure 170/100? Here's some diuretics, come back in 6 months. 5 months go by and the patient has a stroke, and all of a sudden they're patient #1. Asthma? Bah! Everyone has Asthma. Come back when you've turned blue.

Might as well just give up and wait until the ambulance ride to think about treatment. One of the reasons I liked my GP treating my crohn's so much (both times) was that I was their sickest and most fascinating patient. They always had the time and desire to work on my case. My recent GP couldn't even stop himself from interviewing me about my case when I took my wife in for a respiratory infection.

I feel for you, and I wish things were better. A lot of it is just luck of the draw though. We can't all get lucky all the time and come up with good doctors. I'm sorry, and I do hope you start feeling better despite the doctors.

ugh soup i really wish they would pay attention to you. everyone deserves and needs to have their doc be attentive. and i feel like especially so with someone who is a veteran of their disease who can tell when they need attention themselves.

good luck. i hope it works out somehow.

I'm so sorry to read that it's come to this point Jan but I understand how you feel. I'm nearly at that point myself. It's as if you're not taken seriously unless you show up at a clinic or hospital doorstep near death or in so much visible pain for them to realize that something is wrong. It's disgusting how we're treated by the medical establishment sometimes.

I hope and pray (though I'm not much of a religious guy) that you feel better on your own somehow and that you get some much needed relief in your life.

Hey Jan,

Sorry to read of your frustrations. Hopefully, you will regroup and battle on.

Hey Soup,
Really really really frustrated to hear that you want to give up and can also hear where you are coming from !!!!

I haven't been online for a few days and this is the first thing i see, it cracks me up !!

You extended me a warm welcome when i first logged in here. For that i am forever grateful, and i cannot condone you giving up and really want to convince you that you should keep that chin up....and play them at there own game or just find a way of getting seen to.....i know it is a nightmare.....especially if you are suffering along the way..........

Please think carefully !!.....i hardly know you at all ,but i can tell you have spirit !!!

Kind regards from me anyway

Bruscar

i feel for you so much, but i understand where you are comming from, the cothat nsultants in the uk are terrible, i also have to wait 6 months just because he forgot to book me an apptm. and its so important for him to see me as we are just starting treatment of imuran to get off steriods and he should have reduced them just after xmas when he was supposed to see me!!!
i am doing it myself now as i cant stand the side affects of preds and have been on them to long.

But its not good enough that people with such a horrible disease should be left to suffer on their own, i told my consultant that until he had the condition himself then he could tell me what i should feel like, ( prehaps thats why i left waiting so long!!!)
Dont give up, you need to fight your corner, they need to know you cant be pushed around anymore, phone them every until they will see you, you desvere it, you are important and without us they wouldnt have their well paid job, they work for you. p.s sorry for rant but the uk nhs is something that really gets to me.
Take care,
mandy

Hang in there Jan. I also can't imagine having to wait so long for an appointment. Except when I was first hospitalized and didn't have insurance. I had to get a job with insurance and then wait 3 months for it to take effect. Those were a horrible 3 months.

You have a lot of medical knowledge and experience to draw on at least. Hope you will do okay until you can get more advice/treatment. Don't give up though. You will make it.

mandy said:

p.s sorry for rant but the uk nhs is something that really gets to me.
Take care,
mandy

Click to expand...

Don't worry, the US's private health care has all the same problems and a bunch more. You've got one of the best health care systems in the world. Unfortunately, the best still isn't very good.

Thanks so much everyone for all your thoughts and wishes..

I got a shock today..

My GI got his PA to call me at 9am. She said he wants to see me next Tues if possible at a time that suits me. I am on hols from then for 3wks so I know I can go.

The gastro nurse I sent the email to last Thurs saying I was calling it quits took it to his PA and him and got them to read it.

He is really upset apparently that I had fallen through the net. He has told his PA that from now on she must track me and make sure that my appointments are organised appropriately.

He said that if I cant be fitted into a clinic then he will see me ANY Friday when he has NO clinics at all.

They have fitted me into a small bowel transplant clinic on Tues at 1320hrs to get the ball rolling and so he can see me for a reasonable length of time. The PA said she thinks I would be better seeing my GI on a Friday after that.

I explained to her what I had been through with them, rheums and dietitian and she was shocked. She said without the human touch none of us would manage.

I also have just come from seeing my GP and he was hopping mad at the way I have been mucked about by Rheums and he wanted to write to them on my behalf and tell my consultant what was going on with his staff! I have said no and I will try to sort it myself.

My GP has agreed to oversee my Methotrexate now and wants me to start on an even lower dose (rheums reg said 10mg) of 7.5mg on Monday as he realises my liver is every sensitive and we discussed my concerns about it. I said I didnt know what other options I had left on this front if the Metho knocks my liver off again and he didnt either.

I have to keep him in the loop. At least folk seem to be listening to me now. I told my GP I had dropped 21lbs intentionally (gained due to all the steroids from last August til 3wks ago either IM injection or oral) in recent weeks and he commended me for that then said but I dont want you looking like Kate Moss! LOL I said I didnt want to look like a weeble either!! So he is going to monitor me on that front also.

Am still extremely drained and down and just need some time to bounce back I guess. I am still warey of the whole thing and that the appointments will be a waste of time but we will see eh? At least the message got through to my GI finally!

Will keep you all posted...

Well done Jan, sounds like you've really stirred them up. Dr Middleton does seem to be a decent caring bloke.

Hope you'll now get progress!

I have resently felt like giving up, instead I have been fighting 10 times as hard, not only for myself but for all Crohnies out there, sometimes Dr's like pretend they dont hear us and it is up to us to make them listen. I am glad to hear that this story has a good ending, by the time I managed to read it looks as tho things are looking up for ya. Dont ever give up, I for one look up to all the people that have been going through this fight longer than I have for strength and support, that is why I joined in here to begin with! Reading your story here makes me feel both hopeless and filled with hope. Alot of things on here have me torn. If someone just got diagnosed today and asked me for advice, I for one don't know what I'd say anymore. I know that everyone on here can agree... Life will never be normal and nomatter what med you are on this will never go away completely. The only thing that keeps me going anymore is looking up to people like you soup (that goes for you also Colt, GoJohnnyGo, Drew, Kello, My Butt Hurts, Jed, Katie, and everyone else that I didn't mention, but I have seen and read alot of post's from certian people and they are starting to stick out to me) I look up to you for hope, so this time I hope that I have given you something to fight for.

Jan - I'm glad someone is finally listening to you! I hope you get some results.

Lisa

Can't really add to what Pen said. But I hope you've turned a corner and get the treatment you need

ah so glad to hear that you caught their attention. and also that your gi was upset that you slipped through, he cares about YOU and those are the best drs.
well done on sticking up for youself

Wellllllllllllllll I saw my GI this afternoon....

Basically it boils down to this..

He could and would happily switch me to Humira (which he raised, not me) but says its not as potent as Remi. It MIGHT prevent the peaks and troughs I am having and the big dip 10-14 days pre remi BUT because it isnt as potent, in the end I will end up sick sick sick.

He says my job is highly stressful and even though I get great satisfaction from it and dont find it stressful in any great way I really really need to look at changing jobs he says.

Also that because I have FIVE MAJOR CHRONIC health issues diagnosed I need to stop having such high expectations of myself - erm I dont see them as high I just see them as trying to live a reasonable level of "normality" or "life" and rest and pace myself as much as possible.

He is doing a synacthin test to look at my adrenal gland function because of being on steroids from last Aug til mid Jan then again from Feb 4th either oral or IM injection.

He wants me to try going onto my elemental 7-10 days pre remi to see if that helps me.

Says my last scope showed no ulceration and mild inflammation only. I pointed out that at that time as with the previous 3 times I had been on steroids and antibiotics for at least 2-3 wks beforehand but there was minimal comment to that except along the lines of it showing that the inflammation wasnt that bad to begin with.

Says that I am vastly better to what I was when I first went to him. Overall I agree and did agree with him. He says that "we have the crohns on the run and your disease is under control but you are still showing symptoms". He said this 3 times to me and I am damned if I know what THAT means!

He said they have tried all treatments with me and the impression I got overall is that I have to live with it and quit work.

Came out of there in tears. One of the clinic nurses grabbed me at the reception desk and said "I have never seen you so upset! You are coming for a coffee" So I told her what was going on and she said it was ridiculous.

I never got to ask my GI about my fat soluble vits although I did bring up about my Vit D being low last year and what happened and I did point out that I wasnt obviously absorbing the supplements etc.

I also told him again about my swallowing problems and food and tablets getting stuck - at the minute about 5 times a week and didnt know if it was just spasm or something else. He didnt comment. Pointed out I still have ongoing nausea despite stopping all meds that could be contributing to it. Also that I get stomach pain after eating. All these things get progressively worse as the weeks go by. Nothing at all has been resolved or suggested about any of this.

I still think its a waste of time overall as he did also say at one point that I could be alot worse - which I said I knew. He wasnt nasty by any means and seemed quite understanding BUT nothing has been resolved really except that I am supposed to quit work or change jobs which will lead to me quitting work etc in the long run.

He wants to see me again in 3-4mths. So I am booked for mid June.

The whole thing has just left me even more depressed. I see my Occ Health Consultant tomorrow morning and my GP friday morn.

I am supposed to be handing in an assignment tomorrow afternoon for my last module in my degree before my dissertation and I have lost total interest in finishing it this evening. I just really dont care any more.

oh Jan! jeez.. i don't know what to say, what i can say to make you feel any better.

i think the doctor has a good point in his remarks about your job.. i know you just want normality, and it shouldn't be too much to ask, but for some of us, other people's normality is out of reach, sadly i would say that if it's true that your job is stressful, or even that having a job is stressful, then that is one area of your life you could do well to change. it's one thing that IS in your control to change.

i hate to see you say you're giving up, that you've lost interest, don't care. that isn't the Soupdragon we all know & love. c'mon, you're a fighter.. you have everything to fight for, and we are all right behind you.

there has to be a reason for the things you're experiencing, like the swallowing pills issue, the nausea etc, and yes maybe these symptoms are going to hang around, but that doesn't mean there isn't some chance of alleviating them! some doctor somewhere must be able to suss out what's going on, and get you on something to manage your symptoms.

i'm so sorry you're feeling so bad, and so down ((hugs))

Jan - can you switch doctors? Not that a different one could give you better treatment medically, but maybe emotionally.
You are not wrong to expect as normal of a life as you can get.
Is taking a leave from your job possible? I remember that your doc recommended it a while back. Is that something you can get temporary disability for? Maybe it IS in your best interest to take a break from it for a while.
And as hard as the elemental diet is to stay on, you do extremely well on it usually, don't you? Maybe JUST elemental and nothing else until you feel better?
And can you get an extention or put a hold on your school work until you feel well enough to do it? Your health is more important than it is right now.
Jeez - I hope something I said helped you feel better.
I am NOT a forum hugger, but for you - here is my first. ((hugs))

Hi Jan
Funny thing about work... I hate work... but whichever way you look at it, it's all bound up with your self-esteem (I mean one's self-esteem really, not you in particular). Even though I'd like to give up work (finances willing) I feel as though I'm becoming increasingly sidelined here, probably because I'm off sick so much... and it's a rather unpleasant feeling. I have after all invested 30 years in this job, and i have come to regard myself as being quite good at it (in my better moments). If I really enjoyed the job and was more ambitious about it, I think I'd be REALLY upset about it. If you have the option to take a break and return, that might be a good solution... I mean taking a break when you don't feel so bad, rather than taking a break because you're so ill you can't get out of bed.
Stress is a strange thing too. like you inferred, you may may suffering from it even if you fell OK. I also have a theory (I have a lot of theories, I'm afraid) that once the cause of stress is reduced the effects don't just go away like switching off a lightbulb, I think it may take a very long time for even a healthy system to recover from the effects
When I first read your posts, it did occur to me that all your problems are multiplied by having so many chronic illnesses. Thankfully (???) I only have two. In my lighter moments I play "chronic illness roulette" and wonder which chronic illness I'd have cured, if I had the choice. If I had the peripheral neuropathy cured, at least I'd I'd be able to run to the toilet without falling over!
I don't what to say about the doctor... he may be competent but maybe his "empathy" could be improved... like my doctor, when he first put me on azathioprine, kindly pointed out that he'd only had one death resulting from prescribing the drug. Don't think empathy is something you can learn in medical school
As for the degree, now is probably not the best time to be making decisions about it... I've made some bad decisions when I've been down... but it does seem like something that will help you focus when you're feeling better
Sorry I've rambled, but I'm not very good at the huggy thing.
Keep posting

you said that doc said that your crohns is under control but youre still symptomatic. could that be the IBS then? sorry if that is a dumb suggestion, i honestly dont know what im talking about. you are dealing with far more complicating factors then i have dealt with. but, i feel that that would make sense. but is there really anything to relieve IBS symptoms? gah!

i am also frusterated that your swallowing problems and pain after eating werent resolved! those are big deals and need attention in my opinion. has anyone looked? can you get and endoscopy??

ahh i dont know what else to suggest! i just want you to get better jan, or at the very least, go through less frustration while you are TRYING to get better. this is all so much to handle.

sending loving thoughts....

I don't see how the doctor can say your Crohn's is under control but also acknowledge that you are still having symptoms - that doesn't make sense at all! I can see why you are so frustrated and upset. I agree with Kello - have you had an endoscopy?

I sure wish I knew what to say to help. Please don't give up - you have to much to look forward to. Hang in there, Jan. I'm thinking of you.

Lisa

As far as most doctors are concerned no ulcers means under control. To a lot of doctors no ulcers means inactive and in remission. To some doctors, no ulcers means it was never there in the first place.

Kello, I've had quite a bit of success (still there but I can live with it) with elavil (adrenaline and serration reuptake inhibitor) and bentyl (anti-spasmodic/muscle relaxer) for IBS but I think soup's already on something similar to these.

Hey folks,

As you probably know I havent been around for a while and yes I have been very down and still fighting it.

Thank you all so very much for your thoughts and I hope I can do your suggestions justice now..

I had an upper gastro scope in Autumn 06 and it was from that report that I was able to work out I had crohns and it was just a case of figuring out where.. At that time there was no ulceration etc on that scope just abnormal cells in a specific layer of my gut lining. My GI the other week never contemplated another upper scope when he asked when my last one was.

You are very right Colt that I am already on anti spasmodic drugs for my IBS. Are you ready for this? My GI told me it was very hard at times to tell the difference between IBS and Crohns! You are also right about the no ulcers meaning under control etc too.

Steve you are very right about multiple health issues and most run screaming from me when I try to explain for instance I cant take NSAIDS for my arthritis due to my crohns and that things like tramadol slow my gut function down and then ask what CAN I take? LOL

My boss wants me to move up the ladder again to deputy sister level (I was one when I was on the education side for almost 2yrs in an attempt to ease my exhaustion but working 5 x 8hrs a week rather than 3 x 12 was worse for me so I went back to clinical practice) and I need to decide what to do..

I saw my Occ Health Consultant the next day after my GI and its why I havent posted recently.. She told me that if gastro and rheums are struggling to treat me AND as I owned up to I had been working full time since my phased return for 4 weeks and the last 2 wks prior to my hols I was just mentally begging for my hols to arrive that we needed to be looking at early retirement on grounds of ill health!

I was totally stunned. She is sending for a report from both Rheums and Gastro and will send for me when she has them. Meantime she has asked that I start looking at the finances of it all.

I then saw my GP on Friday of last week and when I told him he said "you dont really want this do you?" and I said no. He knows I dont feel I am at the stage where I am ready/need to give up work on the retirement front. He told me he thinks the chances are very high that I will end up on low dose long term steroids and if thats the case he will monitor me closely. He also said that he finds folk who give up work totally then have massive flares of their health problems which are almost impossible to manage because they have stopped.

He had my Disability Living Allowance Report request from the bods that do it and said to me "do not worry about this I will make sure you get what you need". If I get DLA at a reasonable level it means I can still continue to work BUT might be able financially to reduce my hours. So am hoping to hear in the next couple of weeks..

As I said I am on hols at the minute and my GP wanted to put me off sick again but I have said I will wait until my 3.5wks hols are almost over (go back 10th April and see him 8th April) and see how I am then.

When I went in for my Remicade last Tues I discovered they had not been giving me a high enough dose and they sorted it out and the dose went up by almost 100mg! I have felt a bit better since then even though very very drained energy wise - wonder why I felt better!!

I also saw a new gastro nurse and a rheumatoid specialist nurse and both were a total waste of time. I asked the rheums nurse if my methotrexate impacts on my liver again what are my alternatives? She wrote to my cons who I have never met, never mentioned my question and then said I told her I couldnt cope with the pain until I was in clinic mid April which I never said! I know I am irish but I am pretty sure I speak clear enough english!!

I am back on my elemental full tilt and have said I will stay on it approx 2-3 wks minimum as its the only time I feel better apart from steroids.

So as you can see I am still chasing my tail trying to level the playing field as it were. I have also had episodes of my finger tips turning blue on both hands which I told the rheums nurse about but she wasnt concerned...

So still cant win on any front at the minute. I am not allowed to go back to Ireland as per my GP because I am so exhausted and having alot going on family wise I have to say I agree as I couldnt cope with it all right now.

I turned 40 yesterday and am still waiting for life to start!! LOL

Hope you are all doing ok. Will post when I can...

Thanks again for all your support.. it truly means alot.

Blimey Soup! never just rains for you does it. I've no idea what I would do in your situation. Just hope something comes right soon.

WOW, sounds like you and I have the same Dr almost. Seriously the ups and downs and yo-yo effect gets old , I am starting to see it myself. Keep your head up, I'm trying to....HAPPY BIRTHDAY w0000t!

Jan,

All I can say is "I'm sorry!" It really hurts when it feels like the people who would understand the most, people in the medical field who deal with this daily, can't squeeze you in, you feel like where else can you turn? *Hugs for you*

Happy belated birthday Jan! If 50 is the new 40, then 40 must be the new 30. I hit the mark next year.

Thanks everyone for the kind thoughts and birthday wishes! Sojourn, I have to say I really enjoyed the thought of turning 40 believe it or not! Could well be the new 30 LOL Think its because within myself I just feel settled.. about me as a person and who I am etc. Does that make sense?? Just need my body to follow suit LOL

The latest news is I have been turned down for Disability Living Allowance here on the grounds of "although you need some help with your personal care from another person this is not for a significant portion of the day or frequently throughout the day"

And

"you do not have a condition that physically restricts your walking"

On the first one they listed TEN different areas I did need help with but still threw it out on the basis of the above. On the second they discounted my inflammatory arthritis totally!

Having talked to them on the phone yesterday I am asking for a review under a different assessor. I am going to get my GP to write a letter (despite him filling in all their forms before) when I see him this wednesday. I am going to ask my Occ Health Consultant to write a letter also. Finally, I am going to keep a diary for 24-48hrs as they have suggested and send the whole lot in with my fingers crossed.

The review will take 11-13 wks. I have to have the info in by 27th April at the latest. If I then appeal that decision then they have told me it could take up to 12mths for an answer!

I was on my elemental drinks for a fair bit of my annual leave and started eating again last week but find I am so uncomfortable an nauseous that I am going to try a combo of both elemental and small amounts of food for a while.

Since my last remi infusion and trying to eat again last week I have had formed stools again (first time in over 6mths) so I think that says alot for the increase in dosage they did and that I was right it was my Crohns and not ruddy IBS the whole time!!

I see the rheums nurse friday week and also find out today (from my blood results) if the methotrexate is being increased OR stopped depending on its impact on my arthritis (which is nil to date) and my liver function due to the problems before. Will be working it all out on wednesday with my GP and then following through with the rheums nurse either on the phone or wait til my appointment. To be honest am not one bit interested in going near them and would rather my GP sorts me out which I know he will!

On top of all this my mum had a Total Hip Replacement last Tues and got home Fri so I have had constant phone calls day and night because she suffers with panic attacks and has also had big pain issues. She is getting there but am glad I am in England and not Ireland as just doing that has floored me never mind physically being there!

Anyway, will keep you all posted. Am not great at the minute as my asthma has now decided to play up due to the changing weather at the minute! Will be around when I can.

Soup - another aspect to think about regarding filling in your appeal for DLA. dunno if you've heard of D.I.A.L. - they offer really great advice and support with all kinds of disability issues, and their counsellors will actually help you fill in forms for benefits in the best possible way for you and your circumstances. (going to enlist their help myself as i also got turned down for DLA).

here is a link to the branch location page of their website http://www.dialuk.info/findadial/index.asp

hope your mum is ok soon!

Hey Ding,

I hadnt heard of D.I.A.L and looked at the link you supplied. I phoned them as there is one here in my village.

He is going to send me some info in the post but said from what I read out to him from the DLA letter that it certainly sounds as though I have a good case. He said they only help with initial filling out of the forms and not appeals.

He also took my phone number and said someone would give me a ring and see how I was doing.

Will see what he sends out to me in the post.

Oh, Jan, I am so sorry you have been turned down for disability. That is just unbelievable!! I don't even know what else to say. Good luck with the review. Hang in there, girl. Something has to go your way soon. Hope your mom makes a quick recovery.

aw i didn't know D.I.A.L. didn't help with the appeal papers, Soup

i hope your appeal is successful, let me know how it goes.

Dont worry Ding it was the thought that counts and maybe some useful info will turn up from them in the post.

I saw my GP this evening and he thinks I have Raynauds Syndrome now along with trapped nerves in both shoulders due to inflammation from the arthritis.

Wont increase my methotrexate because of how I feel for 48hrs after taking it. My blood tests this week are just below the top end of normal so he doesnt want to rock the boat on that front either.

Came out with double strength antibiotics for 2wks as my chest/asthma is deteriorating and he also gave me steroids to keep at home in case I get worse over the hols and need to start them.

Was stunned I didnt get the DLA and said to go back and see him when I was ready for another letter from him to help the review so we could discuss it before he wrote it.

Not really any further forward at the mo but am seeing the rheumatology nurses friday week and intend on doing a list of what joints, muscles and nerve pain I have and how it impacts/restricts me. My GP checked my hands today and says I have restricted movement in my thumbs now.

He mentioned that I might have a Gamma Globulin problem which relates to low antibody levels and needing them topped up when you have auto immune problems. Its kind of blown me away as I cant work how that would impact on the remi etc. Rob Peter to pay Paul eh? Sigh..

Wanna just shoot me ding? Its a heck of less stressful all round and less costly! LOL

Hey Soup.. Hmmm, you neglected to add Raynauds Syndrome to your signature..

It really galls me that they turned you down. And that you have to go through the appeals process. Considering the stress we endure, is it any wonder we're sick? Anyway, positive thoughts. My prayers go out to you. God bless.

After my disease struck, and my career evapourated,,, well, I was doing OK for the period my severance and settlement package were in place, but after that, my life changed drastically. No income, money pouring out just to live, drugs, all of that.. I was forced to find something, ANYTHING, just to earn a few $$$.
Resorted to private investigation.. wasn't able to work much, wasn't physically well enough. The money was laughable.. I made less doing that (about 1/5th) of what I'd paid in taxes the previous year. But it was at least an income, and no matter how sparse, better than nothing. And it fit within my limitations due to health. BUT, I saw so many cases of people who really didn't need aide, all of them fudging to get it, then abusing it, living the high life at the expense of those who needed it, yet didn't know how to play or beat the system to get it.
God, that really, really made me ill. I know we live worlds apart, but I'm willing to bet it happens there too. As a nurse, you may have witnessed it first hand.
Anyway, my fingers are crossed. I'm routing for the good guys to win one for a change. I know you were so tired of fighting the good fight, but don't give up.
The whole point of programs like this are to help those who really need it, and in your case, welll, I think getting you into the program will help balance things out. Besides, us idealists need to have hope that things will work out right in the end.

LOL Kev.

I had two reasons originally for putting up my "list" of problems. One it helped me to work out if I really had some major things going on - sort of a mental registering and trying to get my head round what direction I needed to go in.

The other reason was I seemed to be saying alot to folk here "Yep I have that" and I thought that there might well be some who would think I was attention seeking and having their doubts about me.

Its something I have seen happen on other forums and the individuals ending up banned. Also that some have come onto a forum (at that time it was Asthma UK) pretending to have a problem for the attention and then being found out. It created alot of mistrust funnily enough.

I have never had those feelings here though and was just playing safe as it were.

Does that make sense??

One piece of good news is I phoned and applied for a "blue badge" here. It allows me to park in disabled bays so I wont have so far to walk when going to the market etc. I have been out with someone who has one and it has made a huge difference to me.

There are set criteria for it but she said even though I didnt get the disability this time round she was going to recommend me for one. So I pay £2 and send in a mug shot and hope that the powers that be there agree with her.

no i don't wanna shoot you Soup, for one thing we'd miss you, and secondly it would make an awful mess lol

ok... so, on the DLA, it looks like your GP is fighting your corner - that's good! how about getting loads of other backup letters from all the medical people in your life including nurses, consultants etc. bombard the benefits agency with evidence, and make sure you put every single thing down on the form that affects you with regard to your health issues, even if it means attaching umpteen continuation sheets....

i hope your chest clears up soon - that's just another thing you could do without worrying over right now

Hey Soup...

It never ceases to amaze me how I can write something with the best intentions, yet it is only on the 3rd or 4th re-read that I realize it might be taken the wrong way. I don't think you did, at least I hope you didn't, but I certainly didn't mean it as a criticism. Far from it. I admire and respect folks who tell it like it is, spell it all out. It certainly helps feeble minded farts like me who are prone to assumptions. All the best, keep your chin (and spirits) up, okay?

Kev

WOW, Soup!!
What a time you've been having!
It almost makes you want to take the low road and fudge whatever you have to, to get the results you want!!!

AAARRGGHHHH!!!

I will be wishing you all the best with your appeals!

And I agree with Ding, way too messy!!! LOL

Ding, I got a letter yesterday from them allowing me an extra 10 days to gather the info. Apparently they count from the day you tell them you want to review/appeal rather than the date of the letter they sent. Certainly will take the pressure off me with so much to do! My Occ Health Cons and GP are both going to do letters. I might see if I can get something from Rheums and Gastro too..

Kev, Of course you didnt upset me in any way. I laughed when I read it!! I think it would be easier to put up what ISN'T wrong me the rate I am going!! LOL I also agree with you that there always seems to be those with lesser issues getting tons of support but I try to think to myself that they may have something going on not so visible. It helps me to cope better. Bit like us using disabled toilets and someone challenging our need! LOL

Lady B, I will get there in the end I always do. I just have to take the scenic route every single stupid time! LOL

Thanks everyone for your support. Just being able to rave here helps me to sort things out in my head and work out a direction to go in. Also to have your thoughts in case I have missed something out!!

((hugs))

jeez soup. everything you are dealing with makes my head spin. i think i would just duck under the covers and stay there for a good bit.
props to you for keepin on, girl. you are a tough lady

i hope SOMEthing, ANYthing, is clearing up for you.
all the best.

Ach Kello I will get there in the end. I dont have a choice really eh?

Does get me down at times (and moreso of late hence I have been having a rave here) but I manage.

I went to see the rheumatology nurse last friday and ended up with an injection of slow release steroids which are starting to kick in now thankfully (hence wide awake at 3am lol) as I was in alot of pain and restricted moving again. She is hoping that they will tide me over til the methotrexate is increased and starts to perhaps help me on the arthritis front.

I see my rheums registrar mid june so am hoping to have some things to kick around with her plan wise by then.

Glad to see you back with us post op honey - you have been missed alot!! ((hugs))

If Jan can still smile, there's no reason I should be down on life.

i second that motion

See Benson and Kello I think I am fortunate because the only surgery I have had in my life was facial surgery over 10yrs ago due to my inner nose collapsing and contributing to breathing problems LOL

The health issues I know you both live with and yet stay upbeat about it all helps me to keep things in perspective.

I thoroughly enjoy reading both your posts and learn much from you.

Variety is the spice of life and without it life would be dull eh?

((hugs)) to you both. I think alot of you both and continue to count myself lucky to have met you in life.

Jan, I'm glad the steriods are starting to kick in.
Hopefully you'll get some rest, tho!!
((HUGS))

Hooray for steroids!! Hope things turn around for you soon, Jan!