Tired and drained

[Sandrapez]

I have all these rare diseases and the doctors don’t have a clue how to treat me! I have mild copd, a rare cancer disease, of the lungs, now it looks like it’s spreading, I have problems with my gum bone, and serious problems with the feet...I have some thing called reactive hypoglycaemic which doctors don’t know how to treat! I’m biopolar, also have bad arthritis...not sure how there going to treat the Langerhans cell histiocytosis, as I have been diagnosed in feb, 2016, with no on going treatment, just see the oncologist once a year and the blood doctors! So tired of feeling unwell!! I give up!

[Caspiana]

Dearest Sandrapez .

Sometimes it really feels hopeless, I do understand. You have so much to cope with, and you mentioned the doctors not knowing how to treat you. That must be extremely frustrating. Are you under specialists or general practitioners?

I cannot offer you any advice about your conditions, but please, please know you can come here anytime and share your feelings. It really does help.

Remember there will always be a totally dreadful time, and just when you think you've reached your limit , there's a tiny light ahead. 🌞With a new day brings new thoughts and renewed strength.

With warmest wishes.

Cas xx 🍀🌱

[Sandrapez in reply to Caspiana]

Thank you for replying, I’m under several consultants, oncologist, blood consultant, and I have to go to children’s clinics, cause the Langerhans cell histiocytosis, is normally in children! Only 886 adults have it in the world!

[Caspiana in reply to Sandrapez]

I am well reminded not to moan about my illness when I read your answer Sandrapez . 😕 Keep your chin up. Better days there will be for sure! xx 🌹

[donut43]

Poor you it does not rain but it pours! Never give up there are always some one worse off than you. Keep in touch with your GP and use this site to get loads of info and share your problems.

Dan

[Sandrapez in reply to donut43]

Thank you dan.

[sassy59]

Please don’t give up but push harder to get much better treatment from all concerned. If you can’t do it then please try and get help from family and friends.

I wish you better days ahead. You have such courage. Xxxx

[Sandrapez in reply to sassy59]

Thank you so much for taking the time to read my message, and also replied very much appreciated! X

[breatheeasy1]

Hi it certainly sounds like you have a lot on your plate, and I'm sorry you've been so ill, you must be such a strong person to cope and keep pushing on regardless. As Cas said, just when things seem at their lowest there is always a tiny glimmer of hope out there somewhere. And don't forget that the medical profession is advancing all the time...

Do come on here and have a rant when things feel tough, everyone is here to support each other, and I know from experience that it really helps!

Sending you hugs and wishing you better days ahead...xxx

[Caspiana in reply to breatheeasy1]

😘😘😘

[Sandrapez in reply to Caspiana]

Aaaaw thank you...😘😘😘😘

[2greys]

Hi Sandrapez, welcome to the community.

You never alone here, many of us have multiple, varied, chronic conditions and know how hard it can be to cope with their symptoms. It is also fair to say that most carry on with their everyday lives as best they can, as I'm sure you do as well.

Not everyday is a bad day, there are good days too which we appreciate all the more and make the most of them and can share. On the bad days we have each other to talk to, knowing that we really understand and relate to how you feel because we go through them as well.

[Sandrapez in reply to 2greys]

That’s so true thank you so much! Xx

[Lyd12]

What a beautiful young lady you are, lovely picture.

They are working on these rare diseases all the time, youneverknowwhen a cure might be found. Lots ofgood people on here, so you now have many friends, but I hope you find some closer to home too.

[Sandrapez in reply to Lyd12]

Aaaaw blesss you thank you for taking the time to reply.xxx

[Carnival567]

I so feel for you. I too am collecting rare diseases, but not as rare as yours! I just wish all the different specialists would get together. All the best xx

[Ergendl]

All the best, Sandrapez. I hope the consultants find some breakthrough treatments to help you improve soon.

[Sandrapez in reply to Ergendl]

Thank you really appreciate all your thoughts 😌😌x

[Hacienda]

After reading all your problems, I shall never moan again.. You Poor Girl, The advice from Cas and Co is so genuine and everyone here will wish you well. Please do keep us updated, have a good old moan and we will listen and try and lift your spirits, never give up, you know your strong and Beautiful.. Keep Positive and allow The Doctors to guide you. Sending Love n Hugs Sweetie. XXXX

[Sandrapez in reply to Hacienda]

Aaaaaaaaw bless you thank you..x

[mskpjb]

In your position I'd be having a really loud rant. Life just isn't fair is it ? To have one problem's bad enough but you have quite a few on your plate. All these doctors and consultants we see only fleetingly. I wish there was an official " care" person we could see when we needed reassurance or advice. That's why this site is so valuable. We can share our fears, our misery and even our joy when we need someone to talk to. Wish I had a magic wand for you pet but I'll have to send lots of love instead. Sheila xx

[Sandrapez in reply to mskpjb]

Thank you Sheila, especially for taking the time to reply. Xxxx