[joanne8]

hello everyone hope you are all ok.

i went to my dermy appointment today,with not much look,just asked a few questions how long been going on,what happens when it flares,do i know any substance what triggers it,my answer well no thats why i am here.

put me on a intense course of high dose antihistamines told me to come back in six weeks,didnt look at my skin or anything,i came out quite hurt and distressed,what does it have to take before they realize how severe it is,do i have to end up in the emergency room with anaphlytic shock.

at this point in time i am so low and scared,i feel like i cant continue no more like i am, my quality of life is very little just existing.

i just dont think this is fair on my family,my hubby is so good to me, he feels so helpless and frustrated with it all,but we are just wasting our time and banging our heads against it all.

to add to all of this i have my mother and my hubbys mother who just dont think anything is wrong with me,which is difficult especially comming from my mum as she knew the person i was before,very athlectic,loved makeup,socialising, i had such a zest for life,my mum told me tonight that she grants me that i have an ongoing skin probs,as she has seen it severe with me,so thats what she puts it all down to allergies,fair enough but anyone with allergies will tell you they are evil and very scary.

so i have totally given up now,i feel guilty for saying this but my fight and faith has gone,i am not trying anymore i have had enough, theres no more i can do, i have made my mind up i will not seek medical advise again, i think i have excepted what will be,will be.

sorry everyone i dont mean to make anyone feel sad or low,i just cant deal with anymore.

thankyou all so much for your support and friendship.

joanne dolling

 

[LoopyLoo]

((((((Joanne))))))

My goodness, no wonder you feel so low right now. You've had 18 years battling with ill health and suffered one knock after another. It's a horrible experience when you feel cheated by an appointment. u build yourself up to go in armed with what you want to say and come out forgetting it all. At least you weren't dismissed totally and you can go back in 6 weeks. Can hubby go with you, it may help to get the doctor to listen.

I'm wondering if you've had a skin biopsy at all? It may be something to suggest on your next visit.

How are your sinuses and blocked ear? Did you get to see an ENT specialist?

Sending you gentle hugs :hugbetter:

Pam xxx

 

[joanne8]

hi pam, thanks for your kind words.

my hubby did go with me as i use a wheelchair,he feels as bad as i do.

i have never had a skin biopsy,they are not interested.

no i have not been referred to a e.n.t specialist,and yes my ear is still blocked.

to add to it all for some reason i have been erased of the computer system by accident at my docs surgery, they have told me i have to go in to reregister with them again,

i have made my mind up i wont register with them or any surgery,i am going to wait until i have ran out of all my tabs, i will not be renewing them or seeking any medical advise from now on.

i cant handle anymore of this i would rather just get on with things and let nature take its course, i think we can get to a stage where enough is enough,this is definatley what stage i am at now,very sad but you can only fight so much.

thankyou so much for all your support though.

love and best wishes joanne dolling

 

[LoopyLoo]

Joanne - sweetie I'm worried. You have too much going on health wise to give up on seeking advice. I know you feel rejected and dismissed....who wouldn't?!?

Please please don't give up. Let hubby read the advice you've had here about appointments and make a plan. Write everything down and make sure you get all your questions answered. It is scary I know - I've been there but it's your quality of life at the end of the day and that's just far too precious.

Are you happy with your general doctor? If so then re-register with the surgery or maybe you could find an alternate practice. I know we shouldn't have to push for treatment but unfortunately that's the way of the world these days.

Please take good care of yourself.

Hugs,

Pam xxx

 

[LolaLola]

Dear Joanne,
I can fully appreciate how fed up you must be. You are clearly very unwell and have run out of fight right now. Please don't cut yourself off from us we all understand and want you here whatever you choose to do. I am sorry about the family stuff,it is very hard having to convince people close to you as well as Doctors.

Would you do something for me if you can? I would really like it if you wouldn't make any final decisions just yet. Don't close any doors at least until you are over your initial upset.
If you want to PM me, even just to say how unfair it all is, then please do.
I will be worrying about you.
x Lola

 

[eagle55]

hi Joanne, i am not sure if we have meet before or not. i am from central il.if you are close i will come over. i have had lupus for 23 yrs now.and i have had alot o very low spots. i wondered if i was going to be able to get out of them.If i may ask what type of skin problems do you have is it a rash or sores. have you ever taken any antidrepreeent. you can not let this get youdown gdt a pillow and scream into it i am not kidding it helps.you just might need to find anther dr. i have found sometimes you have to be very forth coming with them. they are working for you anyway.i hate to stop but i can not keep my eyees open email me anytime and hang in there.take crare sue

 

[Katharine]

Hi Joanne,

I am so sorry that you feel as bad as you do. I can understand that feeling of desperation but you absolutely must never ever give up!!!!

I know this may sound hard but I would try to see the "positive" side of this. The dermy did say to you to come back in six weeks. For me that is a positive. Docs can often be very distant and I remember I used to think my rheumy didn't really believe me ( I think we get paranoid after a while for being told it's all in the mind). At one stage I felt my rheumy had dismissed me and I lft about 6 months between visits. I later read in her reports that she was surprised I hadn't come back in between. In the end I worked out that she did believe me, she just didn't have the answers at first. We now have a great relationship

Now, this doc you are seeing my not be the best, maybe he/he will never suit but despite our moaning about docs many of us here have fantastic docs who do their very best to help in any way they can. They ARE out there!!

Have you thought about posting here to find a good doc in your area and just go privately to begin with, just to get over that problem of diagnosis and initial treatment plan? I don't know where you live or the system there so this may not be possible for whatever reason but I know it is sometimes worth it.

I don't know what more to say but please don't give up. You are FAR too important for that and I don't see why the ignorant docs should win and keep rebuffing people like that.

My doc was so ana positive oriented that I like to think that through her experience with me, she will now be far more open to others as she has learnt that the bloods are not always there to begin with.

I wish I could help more,
Katharine

 

[Maia]

I can certainly relate to what you're feeling. It's very understandable and I have gone through spells where I avoided doctors for a while too & just didn't want to go back ever again. I am hopeful for you that you will not give up on yourself though after you get over this initial feeling of rejection having walked out of this doctor appointment without much hope given the immediate result.

Asking you back in 6 weeks does seem to be a positive sign. Do you feel unable to really "stand up for yourself" at the doctors? Or do you do it and they still don't listen or don't have any good answers/solutions for you? Perhaps a list written up in advance, and your husband could be sure to ask the things if you are unable to bring yourself to do it. Include on it why they don't feel biopsying the areas affected will do any good for example.

Take some time off if you must, lick your wounds, then keep searching for answers for yourself. Giving up is not a good option.

((((hugs Joanne))))

 

[elisabethm]

Hi Joanne

What a helpless feeling to read your post do you not have a friend that you can spend some time with it is hard for us to deal with everyday life without having no support from your doctor we know there is somthing wrong within our own body maybe nothing shows on the outside for every one to see but dont give up if you want to send emails to me feel free to do so i truly hope you get through this rough patch we all have them speak to you soon best wishes i send to you and your hubby elisabeth

 

[melanie ann]

(( joanne )) we havn't met, but i feel for you, i had to say something to you...i have felt like you for many reasons, a few weeks ago i was ready to give up on everything...my health, my kids ,nearly my life....beacause for one reason or another nobody could hear what i was saying.... but with a step back, a few strong words from close family... and my god the wonderfull surport i got from the wonderfull ladies on here....i chose to re start my fight.. it is a fight joanne but it's a worthwhile one....sometimes we just need some time to recharge find strength and start again.... you sound a strong and brave lady.... saying from my dad..... don't let the bastards get you down...go back in 6 weeks armed with everything you have, including your hubby.... make a diary,photos, vidieo cam, anything....just makeself heard...
sorry for ranting, but this damned condition is ******
be strong... be brave.... keep talking on here joanne
lots of hugs and wishes for you
take care

 

[mysharonna]

Joanne,

Please dont give up on your quest for answers..you are far too IMPORTANT for that!! Dont give up on yourself, there are so many who care about you (everyone on this site included!)

I think we have all fallen into the pitfalls of miserable doctors at one time or another. Keep looking until you find the one who suits you best. Frustrating yes, but definitely possible!

Until you have your strength back, keep coming here to vent and lean on us as much as you need.

Take care,
Sharon

 

[halfpintfl]

Joanne, please, hon, don't give up That makes everything that you have acomplished and done all these past yrs worth nothing. Remember> there is only one you, that is why you are so very special, there is no body else on this entire planet like you. So if you have to lock yourself in a quiet place for a few days, and tell hubby that you are not ready yet to talk, do that. If you want to talk it out now, tell him. If you only want to come here , in the middle of the night, and just let it all out, do that, and do that every
night till you feel new, cleaned and just plain good. You
have the fight in you hon, I know that you do, or you would not have ever come this far. That alone ia quite a feat of acomplishement, and you should look back on that with pride. Continue writing us here, it will get you more different views. But, please, don't ever forget that fight that you have in you. ((((hugs))))):wink2: ​

 

[BigSis]

Hey Joanne,
Huge sympathies to you:hug:

I'm sorry you feel you've had enough....... I do empathise.

When I felt similarly hopeless just before christmas because ..........oh just the usual stuff and nothing but more stuff to look forward to:worried: , this site was a great help to me.
The simplest and best advice I received was just to get through it a bit at a time.
Don't give up on the docs....some just can't cope with not knowing what's wrong. They like to think they are all seeing and all knowing
Perhaps just give them up until your appointment in six weeks then go in with all guns blazing.

Stay in touch.......

 

[Sage Hen]

Joanne,

I felt so bad for you, reading your post. It sounds like you have every reason to feel like giving up..but, please hang in there! It sounds like your husband loves you very much...I am sure, he feels like he wants you around.

All, of my husbands family thought I was faking it.. to get out of entertaining them..Now, they believe I am ill, but most of the damage has been done to our relationship, because of that and more.

You may have to get yourself really worked up, and get plain angry at a few people, for self preservation's sake Joanne. I am by nature, a very passive person, but..I was very ill, and tired of being treated by my G.P. and husband's family like it was all in my head. Before, I finally got my diagnosis..my husband was diagnosed with Cardiomyopathy. His parents came to town from out of state, and got angry with him, because he put in 8 hour work days..while they stayed here, and was ready to go to go to bed by 9:00 p.m. His mom called on their drive three times, to tear my poor husband up. She later denied knowing anything about his heart disease..of course. She told everyone in the family, that I had not kept her informed about his heart condition..The only thing was..she didn't realise, that my husband was the one, that was mailing all the info, that I had printed off of the computer, and mailed to his parents.

My G.P. ended up apologizing to me in the end..He blamed it on the local lab..(they, always have to blame someone else, of course.)

You don't need your mom in law's approval, or your mom's either, for that matter. Granted, it would be ideal to have it, from both of them..but, you don't need it. in the end they will likely, feel terrible for treating you so badly, and with such suspicion. In the mean time, you are probably adding to your stress and illness by worrying about what they are thinking. I know, in my case that was true.

I had three friends, that thought it was great fun to talk about me faking both my illness, and my husband's heart disease (hypertrophic cardiomyopathy) for attention..too.

I can't even begin to tell you.. how painful it all was for both, my husband and I. We pulled together and got through. We have our faith and relied on it also. I am no longer friend with those women..

Life is too short, to waste on such people. We can find a smile around every corner and a real friend..if, we are one too..

Try and focus on you, and your wonderful family, and getting the proper diagnosis..and.. hopefully, all else will fall into place.

I was really in a bad place about two mos. ago. I went in and got on Depakote..and It is helping me so much. A good head med, can make all the difference in being able to keep on keeping on...I hope you do keep fighting Joanne..You, have a beautiful family..I saw the pictures in the Gallery.

I hope, I have helped you in some small way..I remember, my fight to get a diagnosis..The Dr. thought I was nuts..because, when he told me..the first words out of my mouth were " Thank, God. " It took years also.

Keep The Fight.
Sandy

 

[joanne8]

dear sandy, how awful what you have been through to, i am so glad you are getting to feel better, and your poor hubby not well, bless him to.

your kind words have made more than a difference, you have all touched my heart, i couldnt believe the support i have from people i have never met it has overwhelmed me with all your good wishes.

my hubby is a wonderful man i am truely blessed to have found him,he gave work up to take care of me 6yrs ago,he has never complained once,he sees to all my needs, my family,hubby and two boys are my life, i think is what effects me more when i am in a dark place, i look at them and think you shoudnt be going through all this pain, it is so not fair at times.

it was my b/day yesterday, i had a wonderful day all my family/friends rallied around to make it so special for me.

i am starting to feel a bit better, and i know i will get through this.

i am sincerely grateful to all of you.

love and best wishes jo8