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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Karenlee

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Posted 18 June 2008 - 08:41 AM

Well I had my follow up with my Rhumetologist today. Everytime I go, (it's an hour drive each way) I have an arsenal of questions in my mind and have iron will that I'll ask all necessary questions, talk about recent changes, blood work, etc. But somehow, for some unknown reason, once I'm sitting in the exam room I'm like a deer caught in the headlights and all I can think of is getting out of there as soon as possible. :huh: I think a lot of it has to do with denial and anxiety. I really don't want to know everything, because most of the time it's bad news, so I kind of get into the mindset that I'm fine and I just need a refill for my script. I used to walk in with a list on paper so I wouldn't forget anything. Now I just want in and out at lightning speed. I know that's not the right approach and I just drive back in a daze thinking of all the things I missed.
Thankfully, they know enough to ask ME the questions, and leave no stone unturned. I'm scheduled to have a dopplar on my thyroid gland, and a PFT test in July and a consult with a pulmonologist. I was told that my echocardiogram came back fine (whew) and had more blood drawn for ANA etc.

Anyway, just wanted to share that for some reason. I'm not proud of it but that's the way it went today. I'm just happy to be home and not have 3 difft doctors poking, prodding and touching me.

Karen

#2 truman

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Posted 18 June 2008 - 10:58 AM

Hey toots:

You are me in mirror image, although I gotten to the point where I ask, because I feel I can receive <_< <_< .

Hey, just put some sausage and peppers on, let's dig into a good sandwich and enjoy the good weather :lol:
Tru

It is what it is...........

#3 KarenL

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Posted 18 June 2008 - 11:08 AM

Hi Karen,
I kinda know how you feel, but not how you act. I guess my feelings are why even bother knowing, when there's nothing that can be done anyway, as Tru says, it is what it is. Thankfully, my husband comes on every single visit and asks all the hard and scary questions, and my doctor is the best of the best. I sit there sometimes checked out like they're talking about someone else! It's not easy being us! Keep the faith and do what you can. Don't beat yourself up for that you don't do, it sounds like you get done what needs doing. Treat yourself well.
Peace,
Karen

#4 Karenlee

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Posted 18 June 2008 - 11:09 AM

Now that sounds good to me! And we'll need something good to wash it down with ;)

#5 Peggy

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Posted 18 June 2008 - 11:57 AM

I think you are no different than all of us. I will even go in with a list of questions and it never fails that when I get home I think of a ton of things I meant to ask about. Congrats on your heart test! I'm glad it went well and wish you luck on your upcoming tests.

Warm hugs,

Peggy

#6 Guest_Sadie_*

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Posted 18 June 2008 - 12:27 PM

Hi Karen, What you are going through is very normal. Like Tru, I had times like that when all I wanted to do was get in and out of the doctors offices fast but that has gotten better. Anytime you need to talk, we are all here for you!

Sadie

#7 Karenlee

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Posted 18 June 2008 - 12:45 PM

Thanks everyone! You're all so kind to make me feel less dork-like :P
I really appreciate your kind responses.

Karen

#8 Cheryle

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Posted 18 June 2008 - 01:55 PM

Karen,
Do you have someone who could go with you and ask questions for you like Karen L? I sometimes have my husband or my daughter go with me.... I ask the questions from my list, but I have them write down the Doctors responses.

I'm sort of the opposite... I sometimes feel I don't have enough time with my doctors.
Glad your Echo was good.
Cheryle

#9 Karenlee

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Posted 18 June 2008 - 10:37 PM

Cheryle,

I have an abundance of people to choose from to bring with me (hubby, mom, mom inlaw, sisters) and they offer all the time, but I am an odd bird. When I have people with me, it makes me more nervous and jittery. I think because I am worrying about them being worried, also seeing concern on their faces makes me feel worse. I know it's silly but I'm just hard wired that way. I have the need to do things on my own. Plus it gives me the opportunity to present the info to them the way I want to, in a less intense manner. Again, I know it seems silly and nonseseical (is that a word? lol) but I never claimed to be rational :P
Thanks for the advice though. Maybe one day I'll be relaxed enough to have someone with me.

Karen

#10 Bird Lady

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Posted 19 June 2008 - 03:14 AM

Hi Karen, I usually just sit there in a fog. I can't seem to think of the right questions to ask. BMW always goes with me with her list of questions and manages to cover everything. My doctor gives us all the time we want and will stay with us until every question is answered. Try to get comfortable with someone close going with you. That way you can double-team the doctor. Good luck, Birdman
Hugs for All,

Julie (Bird Lady)

#11 Snowbird

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Posted 19 June 2008 - 08:26 AM

Hey Karenlee

Good to hear your heart test went well. I motion with the others, we're all like that...and I can't offer any advice they haven't already offered you...so have that big sandwich and a really good drink to go with it!! :)
Sending good wishes your way!

#12 CraigR

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Posted 20 June 2008 - 10:55 AM

Regarding the questions for the doctor that you forget to ask--

I got so bad with that that I always wrote them down on a 3X5 card for the appointment, or I was sure to forget half or more of them...

Craig

#13 KarenL

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Posted 20 June 2008 - 11:29 AM

Hi again Karen,

I used to be like you and in so many ways I still am. You are trying to control this disease and make it bend to your will. You are trying to spare other people who love you from feeling scared and trying to make it less scary and less intense for you as well as for them. I totally get it. BUT---you are tobbing yourself of the opportunity to have people care for you and may be avoiding some things that you need to do. Imagine if one of those people who love you was in your position and they were trying to make it "less intense" for you by maybe leaving out important issues, symptoms, or treatments?

My husband is on top of this disease sometimes to the point of annoyance. I too have always been private and independent, I drove my self to the emergency room twice in my life, before this man! Once I had severe ulerative colitis and once a heart attack! That's not so smart! Sometimes our prde and our care for others clouds our judgement for ourselves.

It really sounds like you need an advocate with you. Ignore them during the exam! My hubby sits quietly and lets the doctor and me talk, and then if he has questions he asks. We talk on the hour and a half drive there and back, write down questions and discuss it all. Then, we follow through and if I get sick he reminds me to call the doctor. If he gets too intense I ask him to back off a little and if I get lacidasical he makes me do my thing. (Take your meds, vitamins, exercise, sleep etc.) It's very very good for him to hear what really going on with me, this way he understands my exhaustion, my lack of sexual desire, my aches and pains, my tears. Sometimes, you have to let someone in. They WANT to be there!

You are such a good hearted sweetie pie, Karen, you deserve to be taken care of. It doesn't make you weak, it makes you stronger! Peace girlfriend!
Karen

#14 Karenlee

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Posted 20 June 2008 - 12:19 PM

Hi Karen, my name sake ;)

Yes, I probably should be letting others in and I'm sure if it were reversed I'd be incesnsed that they didn't do the same. I'm somewhat of a coward in that I cannot bear to see fear on my loved ones faces. That to me is a sign that there is something to be afraid of. Maybe in time, when the dust settles I will be able to have someone with me, but for now, my coping method is to be a loner.

I remember first trying to explain my diagnosis and the pannick that my family and loved ones conveyed. It really didn't help me emotionally. I didn't want them to pity me or fear for my health. I'm sure it's a form of denial and until I can wrap my brain around what's happening, I just have to deal with it in the only way I know how.
I absolutely appreciate their concern, and love them dearly for it.

And for some strange reason, the more people that are in the exam room with me the more freaked out I get. My last appointment with my rheumatologist, there ended up being 3 people in there hovering and touching, taking blood, asking questions, bending my hands, taking blood, BP, notes, questions, and I really felt like I was going to pass out. No matter how many Xanax I pop before I go in, I'm just in a fog and a nervous wreck. Go figure, I'm a complete mess. I must sound like a complete head case to you guys for admitting all this, but it's the truth and I can't hide from it. Maybe I'm just cowardly. :(


Again, thanks for the wise words. I truly appreciate it. I'm so happy that you have a pro-active hubby that cares for you and is involved.

Warm hugs,
Karen

#15 smac0719

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Posted 21 June 2008 - 03:24 PM

Karenlee,

I'm glad to hear your tests went well. At first I didn't want anyone with me at my visits, but eventually I found it comforting. I too take a list of questions and concerns with me and have whoever is with me, write down what the doctors say. I find I don't capture everything on my own. My Sclero specialist is 8 hrs away from me so someone is definitely always with me for those visits. I had a girlfriemd clear her work schedule to accompany me on the last visit. At first I told her no and was not going to allow her to go, but I realized she only cared and wanted to support me. We had a great time!
I may have Scleroderma, but Scleroderma doesn't have me!