It never fails
Posted 18 June 2008 - 08:41 AM
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.
Posted 18 June 2008 - 10:58 AM
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
It is what it is...........
Posted 18 June 2008 - 11:08 AM
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.
Posted 18 June 2008 - 11:09 AM
Posted 18 June 2008 - 11:57 AM
Posted 18 June 2008 - 12:27 PM
Posted 18 June 2008 - 12:45 PM
I really appreciate your kind responses.
Posted 18 June 2008 - 01:55 PM
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.
Posted 18 June 2008 - 10:37 PM
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
Thanks for the advice though. Maybe one day I'll be relaxed enough to have someone with me.
Posted 19 June 2008 - 03:14 AM
Julie (Bird Lady)
Posted 19 June 2008 - 08:26 AM
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!!
Posted 20 June 2008 - 10:55 AM
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...
Posted 20 June 2008 - 11:29 AM
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!
Posted 20 June 2008 - 12:19 PM
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.
Posted 21 June 2008 - 03:24 PM
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!