[gabathomew3]

Hello everyone,

I am struggling with denial since being diagnosed with lupus and RA in October.

Thanks to everyone that pushed me to take the medrol pack the doc prescribed. I listened and took it, but the joints in my hands are still pretty bad.

I have been on the methotrexate since Dec. 9 and will go for first set of blood work next week, then back to rheumy on the 17th.

Everyone in the family is being so loving and supportive, but I keep going into denial feeling like I am going to go back to see Dr and she'll say that she was wrong and it's not either of those diseases. I guess it's because the symptoms are so all over the place it almost feels unbelievable. Also, I can't believe I am going to have to deal with this for the rest of my life.

Can I ever go in the sun again? Can we take Florida vacations? Will I be on this methotrexate forever?
I just feel so out of control and confused and I am afraid I am making everyone sick of hearing my complaints. My husband is being great, but I know his patience level is spread thin. I have always been the strong one and the care taker. I guess I am scared he won't be able to deal with me and all my aches and pains and if I continue to gain weight on the prednisone!
I am glad I can come here and hopefully someone will understand and maybe even relate to what I am going through.

Thanks for listening to me babble!

Gabrielle

 

[tbunny1]

I have taken that boat trip down "de Nile" many a times, and all I can say is that it took time, years actually, for it to start to settle in. Ditto for my family, they struggle with the denial in their own ways, and only time has helped the situation.

If you have always been "the strong one" or the caretaker of the family, there will naturaly be a period of readjustment. Change is frightening to most of us. You can't control other's emotions, so best to just work on your own.

I take yearly vacations to Hawaii, and just have to realize that I can't do all the things I used to, but have an oppourtunity to try things I might not have if I weren't ill. You can go to the tropics, and the beach, just in spurts, with sun screen, hats, cover ups, ect. I try to find beaches with shade, and plan my outdoor activities for the morning hours.

The site has been invaluable in helping me work through my realization, know that we are all here for one another.:grouphug2:

 

[karen.w.]

hi gabrielle

big hugs to you :hug: I can definitely relate to how you are feeling.

I was diagnosed with RA for 14 years then to be told the diagnosis was wrong & I had lupus instead!I went through nearly a year of not truly believing it & convinced it was a mistake,I buried my head in the sand!...It was only when I joined this wonderful forum 6 months ago that I finally started to accept it.


I think it's quite normal to feel this way as tbunny said its a period of readjustment..I also have a very supportive family & friends but I too feel guilty of complaining!sometimes I just wish for a good run of feeling well but there always seems to be something else I am guilty of worrying about my weight when on prednisone & wondering if I was good enough for my husband etc feels silly now when I look back but I think your confidence & self-esteem drops when coming to terms with a chronic illness & the big change in your life.


regarding holidays gabrielle I have had this same worry as we go away a few times a year....we go to florida every year but after last time I flared up pretty bad,my own fault really as I was still in denial so wasn't as sensible as I should have been we are going back in march & my plan is to be out in the morning,with lot's of high factor cream,long sleeves & pants etc with my big sun hat too (completely covered) I will relax indoors in the afternoon when the sun is at its strongest & then will be fine in the evening....

I don't like to be out in the sun at all anymore but I do feel I have to compromise for the sake of my family as well as my own enjoyment of course :wink2: I did go to great lengths to avoid the sun last summer (& on my recent holiday) so with the right protection I'm hopeful a bit of exposure only on holidays wont be too damaging

I hope you feel better soon gabrielle..talk as much as you can,try not to bottle things up & remember we are here for you & do understand what you are going through...
I hope the methotrexate kicks in soon for you too.hang in there,things will get better..

take good care
karen x :love2:

 

[Katharine]

Hello Gabrielle,

I have heard people who have been diagnosed for years question their diagnosis. Indeed, my own mother has done so all her life to one extent or the other. I think it's only natural and is probably not "helped" by some people having such a tough time (and often many years) to reach diagnosis.
I get bouts of this denial pretty frequently but my rheumy has told me there's no doubt at all! The only doubt in her mind is that she thinks I have a myositis overlap on top of my sle diagnosis.

I have had a bit of a job with this recently as I have got to the stage of being severely fed up of not being able to go back to work and wanting to just "get on with it". So, every time I feel half "normal" (sometimes a couple of hours in an evening), I keep thinking that I'm mad, and "why am I niot working?" and "what's wrong with you?"... Unfortunately I keep crashing back to reality every morning and the most part of the day. I'm hoping that one day I will feel normal long enough to actually get out there and do what I want to do but in the meantime I realise that I'm expecting too much too soon and have to be patient.

It sounds like, more than denial, you are having trouble adjusting. That too is completely normal. And, to a certain extent, there will always be times (hopefully very brief) where you feel you haven't quite accepted what's going on.

I think you have taken an important step in writing down your fears and "talking" to us about them. It's very important to talk these things through and can make things seem so much clearer.

If you really are having trouble coping with this all in a major way, I wouldn't hesitate in finding some form of counselling to help you through. The danger of keeping things to ourselves is that we tend to turn things over so much in our own minds that things lose all sense of proportion (especially with regard to how we think others see us and how they can "cope").

sending plenty of warm hugs and positive vibes your way,
:grouphug2:

Katharine

 

[halfpintfl]

Hi, I also, have been in denial, I think everyone is for a while. With me it was almost two yrs. and I still have some trouble. We want a label to put onto our hurting and our pain, and it takes forever for someone to give it to us, and then when we finally get it, it is such a shock, that it is hard to believe. I am the very old fashioned kind of person,; the husband goes to work, I take care of the household, the kitchen is mine, etc.,etc. I think you get the idea. I still have guilt tugging at me today when I see the laundry basket and I know I am behind, or when hubby helps me change the sheets on the bed, or when I don't feel like cooking, but hubby just say's;"good, lets go out and eat"I was on pred.for a short time, and I blew up, and went off,and will not take it again. It takes time to find a drug combo that works for you. But the one most important thing, other than comming here, is to be honest with your family , or you will just continue to get worse. For me, only an antidepressant pulled me out and gave me the courage to talk to family openly. Don't stress,be well:wink2: ​

 

[LoopyLoo]

Hi Gabrielle,

I too can relate to how you are feeling. In a way it was a relief for me to finally know that there was a name for my symptoms and I wasn't imagining things.

I was diagnosed with SLE in June 2006 and I was convinced that I was dealing with it but I now know that I wasn't. Outwardly everyone thought I was coping but in my head there were alot of very dark thoughts and I was convinced my life was over. I was scared to relax or have quiet time as my mind would run all over the place.

Making adjustments to my life hit me hard too as my hubby and I love our sunshine vacations. I treat myself to nice beachwear including a hat so that I look chic in the shade. I also apply a good fake tan so that I can feel and look good.

Everyone deals with things differently - I probably should have seen a therapist but I was scared that if I opened up I'd fall apart. The best therapy for me was to actually meet another lupie! We could talk our heads off with no one to get bored listening to our moans, fears or expectations.

It is easy to think that the doctors made a mistake - some people have been known to stop their meds just to 'prove them wrong', this can be extremely dangerous. Your meds will also add to your mood, especially pred.

I put together an easy to read fact sheet for my close family and friends to help them understand how Lupus may affect me.

Take each day at a time and allow yourself to take time out when you need it. Is there a local group near you where you could meet up with like minding people.

Sending you comforting hugs :hugbetter:

Pam xxx

 

[Douglas]

I have a PhD in denial. If it is a river in Egypt, I must be the captian of the steamer.
Over two years and with each new symptom I think, "Well that proves it. Can't be in denial now!"
A few days later, "Oh, that must have been my imagination. It's all my head. I can cut back on the meds."
I suspect denial comes with the territory of auto-immune diseases....
Douglas+

 

[Stacielee1967]

Denial

Gabrielle,

Denial is something we all do when it comes to accepting something devistating. When we have good days we say oh the diagniosis is wrong and when we have bad days we wish we were having a good day so we can go back to denial mode. I am sure everyone on this site has said to themselves I will beat this and try as hard as I can to keep going on resulting in devistating consiquences such as a flare or more damage to our bodies. One day you wake up and say, well, I can no longer fight. I just don't have the energy anymore. I have to accept this and make ajustments in my life to work around this chronic disease. Then we start to feel sorry for ourselves. We often wonder what we have done so awful to deserve this. If you research the seven stages of death, NOT SAYING WE ARE DYING!! It will help you understand why you are reacting to your current situation. I do not think these seven stages should be associated with death, it should be used as a guideline on accepting bad news! Cheer up!

Stacie

 

[lazylegs]

Hi Gabrielle,

The beginning is always the toughest. You will eventually adjust to the idea that your life has permanently been changed. In time you will learn how to listen to your body and adjust your activities accordingly. Once I learned the trouble signs to watch for I was able to resume most of my activities. I found working and caring for the family helped me block out some of the pain.

The hardest thing for me was learning to say "no" and not backing down. I too had been Super Woman and took on anything I had ever been asked to do. I had to learn to prioritize what was the most important to me and drop everything else.

My family had an adjustment also. The best thing for my husband was going to one of my doctor's appointments and asking his own questions. It made him realize that this was long term and there were times when I would just be in bed unable to do anything. He and the girls started doing things to help out. After 20 years they still hound me not to overdo even when I feel what I now call "my latest Normal".

The weight gain is just an insult on top of misery. You look into the mirror and see an entirely different person. I finally bought different sizes of clothing to semi flatter each stage I was at and never got rid of them. It also factors into you sex life. Who feels appealing when you hurt and are carrying extra pounds. I made this one of my priorities though. Fine I can't always go all the way but just cuddling helps keep the relationship close.

Just remember anytime you feel the need to vent we are here for you.

Take care,
Lazylegs

 

[dudley]

I was never in denial. I just thought that the docs would come up with the majic coctail of drugs (not my first dx of an aoutiminus disease (sp).

This never happened for me with lupus but it does happen for about 90 percent of people with lupus. they go on to live a normal life.

Elaine