enjoytheride

Small whine

20 posts in this topic

As you may have read on a previous post, I ended up going to the wrong specialist. For me it was a big deal to go, taking days and travelling on the Greyhound bus for hours and hours.

 

I thought I would be seeing the internist a couple of weeks after that trip but since then he has rescheduled my appointment twice. I thought that maybe all the blood tests would show something. But now I am worried that something is going on with my best doctor source too- he never cancelled ever before this. I have yet to see him.

 

But I have found myself being angry over the whole thing but, and here comes the whine, I can't seem to make myself do anything about it. I haven't called to ask why I didn't get to the right clinic, I haven't written, I haven't done anything. I can't make up my mind to do anything at all.

 

I need a good talking to- So I think that is what this post really is. I'm giving myself a good talking to.

 

Thanks for letting me have a place to do this.

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Hi Enjoy,

 

How very annoying that you've been having problems getting to see your doctor. :angry:

 

I know myself how important it is to be proactive over doctor's appointments and treatment, but sometimes I think the whole thing can become a bit overwhelming and it can become rather an effort. Fortunately,the feeling usually passes quite quickly and I'm back on the ball again but it can be very wearing, particularly if you're not feeling 100%.

 

It may not be anything personal with your internist; perhaps he's been busy and has had a genuine reason for not being able to see you. I really don't think you should beat yourself up over it; :emoticon-bang-head: maybe you'll feel a little better next week and be able to pursue your appointment with renewed vigour! ;)

 

Here's a comforting :emoticons-group-hug: to help you on your way!


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi enjoytheride,

 

Like Joelf, I can appreciate your feeling as you do. As a matter of fact, it can really take the wind out of one's sails, for sure. The energy factor also figures in, so many of us can relate to.

 

Just enjoy your weekend, try not to think about this and then if you are refreshed by Tuesday, or so, maybe you can refer back to your previous thread and regain your momentum :emoticons-line-dance:

 

In the meantime, here is a :emoticon-hug: for you!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Enjoy

 

I can totally appreciate where your coming from! sometimes in our world sorting and getting through our days are enough to deal with and a kind of apathathetic mood pops in with " oh I just cannot be bothered with it all" or "whatever" its ok, please dont beat yourself up about it!.The endless rounds of appointments and tests and follow-ups are wearing to our battered bodies and minds.

 

Your doctor may have had issues of his own to sort out you know they are human with responsibilities of their own after all,may have needed a holiday or to go to a meeting etc the reasons are endless! plus im sure its not just you he has had to re-schedule.

 

Have some "time out" recharge your deflated batteries and then get back on the bike as it were! you will get your get up and go back and chase things up dont give up ok.

 

Heres a warm hug to keep you going ok :emoticon-hug:

Lynn

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When I first got sick, I had a general practitioner who is a germaphobic (no kidding). This guy was so bad...he ran a walk in clinic and lost his license to write prescriptions for pain medication. There was a big sign in the waiting room. I went to him, they had to help me in and out, I couldn't walk on my own, couldn't roll over in bed etc etc. Legs and feet so swollen they didn't even look like feet. He wrote me a prescription for premarin and said, "well, your 50, it's menopause". He said he couldn't refer me to anyone. I layed in bed, "knowing" that I was going to die. Then my husband and I realized that no one is going to take you by the hand and walk you through this. It's just the way it is. You have to get off your butt and "handle this". My sister and husband got me out of bed and into emerg. Over the next year I was diagnosed with polymyositis, and scleroderma, not the one that effects the skin (so far), but the one that is internal. At one point my husband phoned a rheumatologist office and argued with the receptionist. She finally gave him an appointment for me but not for months later, he told her that I wouldn't need it as I'd be dead by then. When they faxed through my bloodwork that afternoon, she called back the next day and said, bring her in tomorrow. I was very lucky to have my husband and sister to stand with me and help me to be strong. You know how they found out I had the polymyositis? The doctor in emergency, his mother had it and he recognized the symptoms and did the bloodwork. So what I'm telling you is....get mad....(you have every right to be)... then get on the phone, explain to them what happened and TELL them that you need to get in and see this doctor. What happened was just a miscommunication, unfortunately, "you" are the one who has to correct it and if you don't get it started, it won't happen. So go girl.....this is your health that we're talking about here and THAT is important. Sending you much love and many hugs - Lisa


Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

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Hi Enjoy,

 

Did your talking work? Did it help you make any headway on the issue today? I can understand it, wanting answers but not wanting to rock the boat over it, either. Here's some hugs to help you tackle it, whenever.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Oh boy, enjoytheride,

 

Lisa spoke very well to your thread and what really needs to be done; I coudn't agree MORE, either! :emoticons-i-care:

 

 

Lisa, I am SO HAPPY that you have such wonderful/reliable advocates as you have in your husband and sister :emoticons-clap: (Please give them each "Thank you" hugs for all of us. Lisa, as they truly ROCK in my book)!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Thank you Suzie, I will. They rock in my book too! I can only speak for my own situation, it was almost a shock to find out that I was pretty much on my own, when it came to my healthcare.


Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

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I finally drummed up the nerve to call and check things out. I spoke to a sweet reception person who said that I was originally scheduled to see the scleroderma specialist but was changed to the rheumatoid arthritis speciallist because my "referral said CREST rather than scleroderma." I mentioned that didn't make any sense to me. She said that she would call the doctor I saw and ask or the scheduling person and one of them would get back to me. Which has not yet happened.

But I do feel better for having the information that my local rheumatologist's office made the right referral and that any problem is with the specialist's office.

I now have a direction and can be very persistant once I have a clear direction to go.

Does anyone know the title of the person or department I should contact if I don't hear from the doctor's office? Ask for an office manager? Who solves problems like this in a hospital?

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Hi Enjoy,

 

I'm not sure of the procedure in the US but in the UK I would probably ring my consultant's secretary if the query was with them. When I've had to reschedule appointments there's usually a hospital extension number to ring for a specific department.

 

I'm glad you're feeling more on the ball now! :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Dear Enjoy,

I was told to contact the Nurse/Patient Advocate if I ever had trouble in a hospital. I never had the need to so I don't know how it works or if it applies in your situation.

 

I hope you are able to work everything out.

 

miocean


ISN Artist

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Hi enjoytheride,

 

I am SO proud of you for taking the step and calling :emoticons-yes:

 

Should things not fall into place and you need to contact someone who will help you see things through, miocean's suggestion is very good, if the hospital does have such an advocate.

 

Keep us posted!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Thanks for the idea- it will probably go that way. After carrying the phone around for three days, I decided that at 6:45 pm to go feed and forgot the phone. The doctor called- she left a brief message that's sort of encouraging me to never, ever, never call again.

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Hi Enjoy,

 

Hmm, that doesn't sound very helpful! :o

 

I am sorry; it does sound as if you'll have to go with Miocean's suggestion of the hospital advocate.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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