[pamela b]

Hi

I know I ahve been talking to some of you on the not yet diagnosed page.
I had my first rheumy visit today and he has said that he is very happy to DX me with Lupus staright away based on bloods from my Gp , history and clinical signs.
After 3 years of total **** I should be pleased but I am absolutley devasted and cant stop crying.
He is going to do a battery of extra testing and move me into his clinic as I was in the wrong clinic and he was brought in for me
He is so sorry he cant prescribe me tretament until after the test which will be done next week as they will throw everything in the tests.
He is absoltely lovely and said he felt so sorry for what I have been through but it will get better now
Sorry guys but I know you are all theer for me but I guess I had sort of hoped I was wrong.
Pam

 

[granny weatherwax]

((((((Pam))))))

Hi and Welcome

I am glad you have a nice rheumy to see you through your diagnosis and treatment. I think you will find that most of us here have gone through a range of emotions once we have that diagnosis. Initially I felt relief as I knew why I had felt so bad for so long, I had an answer and it isn't all in my head!! I have also felt frustration mainly at myself with the brain fog.

I hope that your wait for the results of your tests is not too long and you can start treatment and feel better soon.

Do not feel that you are alone, all the people on this site are really supportive and have a wealth of knowledge and experience to share.

Take care
Claire xxxxx:hug:

 

[lazylegs]

Hi Pamela,

Your emotions are going to be all over the place for awhile. Try not to be too hard on yourself, what you are going through is totally normal. At least now you can get the treatment you need to get the disease stable.

Take care,
Lazylegs

 

[pamela b]

Thanks

Hi
A bit better now, shock over
He says I also ahve quite severe sjorens which is why my face is so swollen and that my major organs ( heart and lungs ) are effected as well as joints and clearly brain ( cant you tellt he spelling !
He was lovely and although i had said I wantd blood copies told him not to bother as I trusted him
I am pleased to ahve found someone nice.
He asked what I knew of autimmune and told him my dog had it.
He said " If you ahd taken your symptoms and bloods to the vet they would have picked it up at once "

So I am on the road at least but determined not to change my life except the guilt trips for crying with pain an fatigue and lack of housework sometimes are over
I think maybe I should mention it at work what does anyone do ? I guess that I will have to have time off for tests and it will help to explain the silly mistakes I make.
Pam

 

[Katharine]

Hi Pamela and (((((((hugs)))))))

I think that we all hope secretly that we are wrong and many of us who have been diagnosed longer catch ourselves thinking that it is just a bad dream and that we'll wake up soon :hug:

Having a good cry is all part of your grieving and healing process but just know that when you are ready to face into this we well be there to help you along and it sounds like you have a doc who will be too.

As Lazylegs has said, diagnosis is indeed a roller coaster of emotions. There will be highs and lows but soon, with adequate treatment the lows will smooth themselves out more and you will feel a lot better.

I would wait before saying anything at work. What you say and how much needs to be carefully thought out and your emotions are maybe not i the right place for that now. Just my opinion, feel free to ignore me - lots of people do :lol:

huge gentle hugs :grouphug2: :grhug:

Katharine

 

[pollianna]

((((( Pamela)))))) Am sorry your being hit like this, like being run over by a truck at first. You will come round and even out a little. try to feel the feelings and have a good cry to let it out.

Thank goodness you have a treatment regime in place. :hug: Hope things seem a little brighter soon xx

 

[samiyya escape]

hi pam

im sorrry to hear about ur recent news, but isnt it beter that ur get diagnosed earlier so that you can get treated. u have to think postive and hopefully everything will be ok. But dnt worry i remeber when i was diagnosed i cudnt stop crying for whole 2 weeks, evrything will work out. my thoughts are with u.x

 

[WanePoetic]

I was super devistated when I was diagnosed. I spent 5ish years with chronic fatigue, weird rashes, and swollen glands, visited tons of doctors, and no one ever came up with anything... I had come to terms with it all just being in my head. I thought I was a hypochondriac, or maybe even a mild case of Munchausen's. So when the chronic fatigue got worse when my husband left for basic training during my last semester of college, I went to the doctor and told him I was sleeping too much because I was obviously depressed. My doctor (this is the new GP I had never presented my symptoms to before) is very thorough, and insisted on drawing blood. A nurse called me and said, "Good news! It's not in your head, you have lupus!" First I was shocked because there was actually something wrong with me, then I was super pissed because the nurse presented it as "good news," then I was sad/terrified because it was lupus, now I waiver back and forth between sad and scared, and resignation and thinking it makes an awful lot of sense.

 

[Lily]

(((((((((Pamela))))))))))) I remember similar feelings when my concerns were finally validated :hugbetter: Many of us can I think. Especially if we have suffered a lot and have not been taken seriously by some docs we saw on the way.

Your state of mind will improve, it's like a grief process and will take time. Do me a favour though, when you reach the anger stage make sure you get your own back on the doc who said this to you :

He wont find anything and maybe then you will take my advice and have something for depression

(I think it was your GP?) I am still fuming over that statement some people should never have got their licence to practice medicine and sadly this person is one of them.

sending hugs,

love
Lily

 

[keebler]

(((Pam)))

It is a whirl wind of emotions when you get told that you have lupus. I felt all those emotions.

I was told on the phone by my GP that me labs showed I had lupus. All I could say was no, no,no. I didn't want to believe it. I was diagnosed straight away after only once going to the doctor about my pain and fatigue.

You have us here to understand and help you threw all this.
Love,
Lyn

 

[pamela b]

Thanks everyone

Thank you so much for your support
You are corrrect Lilly that my GP did say that.
I think I am lucky in that i have now found a lovely rheumy who will after he has done his test start making life so much better as the last 3 years have been impossible.
He says that there were numerous flags she could ahve picked up,, particularly thats he agve me eye drops and for dry eyes, anti histomine for rashes on repeat 3 years ago and also that I ahev had many tests for sugar for dry mouth and that the heart probems .
But onward and upward and my husband said that he wants to make an appointment with the haed of practice to discuss the attidtude of this GP but dont think it will do any good.
I have not had any sleep for a week with pain and look like the elephant man but I am looking forwarda nd not back

Thank you being there and I am so happy I found you all last week
Pam

 

[LolaLola]

Dear Pamela,

So many of us can identify with what you have been through. I know you are sad but I wonder if there is going to be a bit of anger mixed in for the way you have suffered and been minimised. We are all here for you. You may well find you are a lot better with treatment so don't think this is as good as it gets!

I think you are owed a big apology by this idiot GP.
x Lola

 

[pamela b]

Apology ?

Hi Lola

Yes I agree that I do needa an apology from my GP but dont suppose I will get one do you ?
As she is going to get a letter by e mail by Monday telling her that i quite clearly have Lupus, Sjorens and that my major organs have been effected I wonder if I will get a message to go in ?
He was so nice and wonderful and caring that it sorts of makes up everything as I will now be under him and not her
Thanks everyone without your support dont know where I would be
pam

 

[orangelily]

Hi Pam, I can only repeat what others have said in that the shock does go away. Your are very fortunate to have such a good Rhuemy.

Please take care of yourself.

Sending gentle hugs and kisses

 

[Douglas]

" I should be pleased but I am absolutley devasted"
Exactly! I remember my feelings on finally (after about three decades, because who thinks of Lupus in a man?) receiving the Dx of SLE. It seemed the ultimate good news/bad news joke. The good news = we have a diagnosis; the bad news = you have Systemic Lupus. My wife's comment said it best, "You should get a sign that reads, 'I TOLD you I was sick!" Maybe you could get a tee shirt made.
All the best!
Douglas+

 

[onetay]

Pam,
It is a shock to know you are right and that everything has been real from the beginning. We have all been were you are and you may not believe it now but it will get better. You will have your dx, see your doctor on a regular bases, have your labs watched better for changes, get treatment for your illness, and in time when the meds start to work will feel better physically.

Having lupus does not mean the end of anything, only a life change and learning new things. It is a bright beginning for you. You will have the treatment you depressly need and the meds that will help you the most. It sounds like you have a wonderful doctor that will work with you wonderfully. It takes time to adjust to the news and you will be ok and you are right we are all here for you. Be well and feel well also.

 

[Pink Pearl]

I empathize with you on your diagnosis. It took 30 years to diagnose me with lupus from the beginning symptoms at age 5.

Something that really helped me to make peace with lupus was to take an exercise from one of the Bernie Siegel, MD. He was a cancer surgeon, but wrote several books on how to live with a dread disease. One of his ideas was on how to make peace with your diagnosis. Draw the following pictures:
1] your disease
2] you with your disease
3] your medical team and your disease
4] you, your medical team, and your disease
Ability of art is NOT a requirement. The point is that once you know what your disease looks like to you, you have an idea of how to battle it. You can use crayons, colored pencils, whatever medium you choose. For those really talented, you can do it on your computer, [NOT my ability level.]

Then, give yourself permission to grieve that a part of your, before lupus, life is no more. This does NOT mean that life is over, but you will have a different way of living life.
If you are having trouble accepting or working out how to live a new way of life, perhaps it is the time to seek professional counseling. Being guided into accepting and understanding a new way of life can help to go through it easier and to not abandon the new concessions you must follow to keep yourself safe. Some of us take medications which are often used in psychiatric conditions, but use them for a different reason. My suggestion is to listen to the reasons if you are advised to start with neuro/psych medications. Then, make an informed decision.

To survive this change, find something which gives you pleasure. This is totally subjective, but you need to find something you can do and that on days when you need a boost, you have it to fall back on. But, find it while you can so you have it when you need it. ie: cooking, painting, writing, poetry, needle work, sewing, reading, gardening, whatever brings you pleasure. Track down a meditation cd or tape. When you are having trouble sleeping, resting, pop that tape or cd on and give yourself the time of the tape/cd and rest. You'll be surprised how handy it is to have these things done so you can rely on them to settle down.

Learn how to protect yourself from the sun exposure. Look for a sunscreen of at least 30. See if you do better with using the sunscreen and then use it daily.
Remember, we are here 24/7. Come, talk, listen, learn, and share with us here. Many of us have lived through similar situations so we can relate to your concerns.
Sally

 

[pamela b]

Hobbies and challenges

Hi All
Doug, I am sorry that you took so long to get dx, sada nd very frustrating.

I have taken on board all you have said and hopefulyl some of it will sink in although with my braint he way it is be forgotten straight away !
I think I need to talk to my employer I think as I ahev made a lot of stupid mistakes and considering I ahve a BCs ( hon ) and am doing a half time, typing, reception posts they need an explanation, plus I keep using fleix time and leave because I simply cant make it it and last year with the pericarditis afolloed by pneumnia I was off for 6 weeks and was hounded daily about my health so didnt dare take time off.

At easter in the hope of attempting to get myself better ( fromt the depression thatw asnt there ) I bought a sewing machine, a joke between me an dmy best friend because we hated it at school and it took 2 years to make an apron and I set about learning how to use it.It was my challenge.
I have taken up a pair of trousers and am determined to make her an apron for her birtythday in June although at times I dont even ahve the energy to lift it onto the table I will do it.

As for the doc, I will never see her again except maybe to tell her what i think, I will see someone else. I am just wondering if they will contact me this week at all as my repeat liver function bloods are due and I ahvent made an appoint for it but have put it in a repeat prescription ?
Will let you know and thanks guys so very much
Have the best day you all can and wish you knew how very much your support means
Pam
X

 

[pollianna]

Pam, took ten or so yrs for me to get a DX. My Gp let me see a Rheumy at my insistence after yrs of suffering and seeing every specialist in my City who all came up empty handed

In the end I pulled a swifty at the referral stage and got myself to the Lupus unit . How sad to have to be so devious. My Gp told me the fact I had CTD was " interesting" Bless him tho he didn't find it but he was willing to have give me the benefit of the doubt even tho he clearly thought me mental :lol:

 

[pamela b]

T shirts

Doug

Just thinking the T shirt idea is just great and might actually get one done that says
" I was never depressed, I was sick, "


Pam