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#1 enjoytheride

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Posted 27 May 2011 - 12:52 PM

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.

#2 Joelf

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Posted 27 May 2011 - 01:36 PM

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!

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#3 debonair susie

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Posted 27 May 2011 - 02:30 PM

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!
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#4 Lynnie

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Posted 27 May 2011 - 03:28 PM

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

#5 ladyhawke

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Posted 27 May 2011 - 06:22 PM

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
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#6 Shelley Ensz

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Posted 27 May 2011 - 08:38 PM

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
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#7 debonair susie

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Posted 29 May 2011 - 01:36 PM

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,

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#8 ladyhawke

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Posted 29 May 2011 - 03:06 PM

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.

#9 debonair susie

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Posted 29 May 2011 - 03:25 PM

How disheartening that is to read, Lisa, but I am so glad for your support network and here are Soft :emoticon-hug: s for you...
Special Hugs,

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#10 enjoytheride

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Posted 01 June 2011 - 11:48 PM

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?

#11 Joelf

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Posted 02 June 2011 - 06:35 AM

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! :)

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#12 miocean

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Posted 02 June 2011 - 06:47 AM

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
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#13 debonair susie

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Posted 04 June 2011 - 10:28 AM

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!
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#14 enjoytheride

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Posted 05 June 2011 - 09:45 AM

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.

#15 Joelf

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Posted 05 June 2011 - 10:03 AM

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.

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#16 Amanda Thorpe

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Posted 05 June 2011 - 10:27 AM

Hello ETR

Well if that's not an invite for a formal complaint I don't know what it! Ring the hospital and ask who deals with your type of complaint. Although you will have to say what the topic of the complaint is do not go into details aout it until you are speaking to the right person and be clear that you won't go into details until you are speaking to the right person. It's human nature for people to want to get in on something but you don't want to end up speaking to someone with no authority to resolve your complaint.

Once you have established who to speak to, do you want to make a verbal or written complaint? The benefits of a written complaint are that a formal reply has to be made, you control the content and you give yourself time and space to express yourself fully. The down side is the lack of immediate satisfaction that you get from talking to someone.

Take care and let us know what happens.
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#17 debonair susie

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Posted 05 June 2011 - 10:57 AM

Yes, I really like Amanda's suggestion of a paper trail, ETR.

May I also add that should you send a written complaint, you might also send to others involved medically, with a "cc" at the bottom of the letter. In doing this, it's called "covering your sources", as well as making it known to all "interested parties" that this complaint WIlL be addressed, (more than likely by all).

Also, if it were I, I would include the hospital administrator in this correspondence, as it is their responsiblity to make sure problems get "nipped in the bud"!

Supporting :emoticon-hug: s coming your way...
Special Hugs,

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#18 Shelley Ensz

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Posted 06 June 2011 - 05:19 PM

Hi ETR,

With all of our input, please keep in mind that none of us are professional patient advocates nor lawyers of any kind.

From what I've heard, some doctors or centers are not very receptive to patient complaints and are far more focused on sidetracking or preventing lawsuits than they are in solving the problem at hand. It's very easy for any person or institution to get more wrapped up in avoiding lawsuits than in straightening situations out.

When topics devolve into things that might represent real legal issues, our policy is to pull the thread in question -- only because we aren't lawyers and can't provide any sort of legal advice, not because we don't care. This situation is kind of borderline right now. So if things worsen at all, you can ask us to pull the thread (just email [email protected]). On the other hand, if you are able to make some positive progress in resolving things with the clinic, we'd surely love to hear about it!

Here are some warm hugs to help tide you over.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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#19 enjoytheride

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Posted 12 June 2011 - 11:39 AM

Shelley, I finally looked at this post again last night and wrote something then decided it needed more thought. So I'm back again. I thought.

First this forum has people's helpful thoughts and I found their ideas useful as I was stuck in a bad place- being angry and feeling helpless and disheartened. Depressed even.

But the forum is not responsible for my actions. As my good ol' Mom said to me- "If someone said to jump off of a bridge, would you do it?" That remark must have been learned in Mom 101 as it is still trotted frequently by mothers everywhere.

It took a lot of thought and effort and money to make the trip. I am more than a little bit of a hermit and going to the big city is never something I would do willingly. So I really wanted the best advice I could get. It was important.

And that hope was frustrated. Not by my illness but by a clerical misunderstanding.

Of course medical people are interested in avoiding lawsuits, which is not at issue here anyway. But that does not mean they should put that burden on me. I should not be left hanging wondering what is going on. I am not "a mistake" and best forgotten. Even the messiest buck has to stop somewhere.

If I am wrong, I still should have an explanation. If I am not, then I need someone to rectify the problem.

#20 Shelley Ensz

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Posted 12 June 2011 - 12:25 PM

Hi ETR,

I'm glad the forum has been helpful and especially in working through the emotions of all this. Of course it has to be sorted out, and you know, we are all for it getting sorted out; and I know you understand that and accept full responsibility for your own actions.

In a way, you have already received some sort of explanation, I.e. that the referral said CREST instead of scleroderma. This most probably means that the appointment powers-that-be had no idea that CREST is an old term for systemic scleroderma. It has fallen out of use by scleroderma experts, over their frustration that local doctors were only diagnosing CREST and then not properly categorizing it as limited or diffuse systemic sclerosis, after that. Given how few people know about scleroderma, it would be even more likely that an appointment person may not have any idea was CREST stood for and in the absence of the key "scleroderma" word, they made a mistake by reassigning your case.

Therefore, their concern might be that you have gotten an explanation (however lame it is), but that you aren't happy with it. The patient representative would probably want to know, at minimum, what would make you happy? Do you want to have them set an appointment for you with the real expert you thought you were going to see in the first place? (Probably very do-able, and if it is not, you deserve an explanation.) Do you want them to apologize for it in writing? (Make mental note, that sadly, that is not very likely would not happen simply because a lawyer could use it for ammunition.) Do you want them to reimburse you for your travel expense and time? (Not very likely, probably a referral to a lawyer.)

If what you want out of it is an appointment with the right doctor, then that's what you want to state right up front with the patient representative. If you want something more or other than that, it might be lawyer time, and I have no idea if it would be an actionable item or not (or if it would be worth it in the end.) None of that is for me to decide or even advise on as I have no legal training at all. The only thing I know is that institutions can be very pesky when it comes to complaints because of our very litigious society.

If it helps at all, and I hope it does, I feel sorry for what you went through and that it was a wasted trip. I've had some unpleasant and many unproductive medical experiences and I know how disappointing it can be. Many of us go through years of pretty much useless appointments and opinions on the way to diagnosis, sometimes seeing a variety of out of state experts before getting our first accurate diagnosis (not to mention, treatment), so it's not like you are alone in this, either. I'm not saying it is right, I'm only saying it happens and we all feel it when there are unsatisfactory situations.

: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.