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Rollercoaster Kind of Day


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I blogged not long ago about enrolling in our County disabled transportation program. Today I used it for the first time. I never really intended to use it too often but I really needed a back-up for those trips Aunt Sis either couldn't or wouldn't take. Aunt Sis, like me, is NOT a morning person, so I knew the second I heard "The doctor can see you at 8 am" that Aunt Sis wouldn't be going. So I scheduled the bus. It actually worked out great.

 

This was an initial visit so when the receptionist said I needed all the ID and insurance cards, I went looking for and realized I had lost my wallet. So, I went to the appointment--it was too late to cancel, but they wouldn't see me without the documentation. So home I went and called the office to my next appointment to see if I would encounter the same there. I would so I had to reschedule the appointment but when I hung up, I found my wallet so called them back and today's appointment was still available. I was back on track. I was glad this second appointment was going to happen because it was for a new PCP. Our town is small but fairly well populated so all the doctors practices in town are filled or they're new practices recently opened outside of town--too far to walk to. Anyway, with transportation available, I could easily get there. Today was my first appointment and once there the rollercoaster ride started in earnest.

 

The first "up" was I really like this doctor! So refreshing since for almost three years I've struggled to find a doctor who saw me as a patient rather than a list of symptoms and mental disorders. The second they see those in your chart you can literally see their expression change and the way they treat you changes. That didn't happen today except when it was justified and he treated me like I still have two brain cells to rub together.--whether I do or not! well, what goes up must come down--and it did.

 

Just about a month ago I was taken by ambulance to the ER again with what they THINK may have been a mild silent heart attack. After the initial symptoms subsided I was just really weak and felt yucky but I was allowed to go home with some new meds and the requirement to see a doctor and my cardiologist. I got discouraged because since my bypass I've been working so hard to do what I should and this happened anyway and I'm just plain tired of it all. So I cancelled all the appointments and tests. I usually get through that attitude and this time was no different so today was the start of that. The news was not good and when this is done I think I will have seen just about every kind of specialist there is. A cardiologist an oncologist, gyn, endocrinologist, neurologist and whatever they order...and the bad news? After all of that, not immediately, probably in 3-5 years +/- I will need to have my legs amputated. Unless something can be done to slow down the problems...but only slow it down and maybe give me another year or three.

 

I realize this was a preliminary visit and he said it could be the result of so many things, which is why so many tests and specialists so I've told myself to chill out and see if things change but just hearing all of this is a bit much to swallow at once.

 

On the bright side I'll probably be so busy this month that I won't have time to think about it.

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Jamie, live life to the best of your ability. Don't worry about how long you live, just have fun doing it. The doctor who refused to fill in my life insurance forms to increase my life insurance because I was a bit overweight died aged 60 and I am 65 now. What can you say about that?

 

Sue.

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Thankfully there was no discussion about life span because my ears automatically stop working when they do that and I'm not yet at the point of seeing the fun in having my legs lopped off although that would take care of my foot pain!

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If someone told me that I, or Ray, would have to get our legs amputated, whether now, or in three to five years, I would be in a panic: Glad to see that as usual, you are so level headed about it all. Get the tests done and see where you are then, things like this should be broken to you gradually. The doctor must have seen what a strong person you are. Right around when Ray had the stroke, a friend of mine had your kind of situation but with no warning, they don't even know exactly why; he was a fighter though and always kept a good attitude. I guess that's all you can do really, and we are experts in that, aren't we?

 

I'm surprised your doctor told you this on your first visit, instead of waiting for all the results, but then again he seems like a good guy so maybe he's doing you a favor. Or making sure you keep all your appointments this time! It's a good thing you like him, so that you will be able to communicate with someone you trust until you get this all figured out. Oh Jamie, I feel so bad for you, but just do the day by day thing and maybe it will work out somehow. We never know what tomorrow may bring!

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Sting,

 

Thanks you. I'm not really in a panic, I think because I've already been there right after stroke when I was in the wheel chair and I know I can handle it. Another thing is with amputation there are prosthetics nowadays that are very good and though maybe not as good as the real thing they work for most needs.

 

The doctor is very down to earth and laid back and he might have handled me differently because I'm very much at the end of my rope and I told him right off the bat to be direct with me and not to sugar coat anything. He may have used a softer touch with someone else but he was just right with me. The test results are mainly to rule out things that could be causing it but he's leaning more toward the thinking that it's a combination of things I already have and the test results will help him know exactly what is happening so he can treat it more aggressively.

 

He did admit that it's possible that we find something unexpectedly works well enough to turn things around but he wasn't going to try to hinge my hope on it. He was very honest and straightforward about possibilities both ways but just wants to deal with today and what is right now. For now, that means do the tests and go from there

 

.

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I was going to go into that, the excellent prosthetics that my friend got and even more so for younger people like the veterans (he was a veteran but of the Korean war), anyway just didn't want to jump the gun. And you're right, I don't think of a wheelchair as a scary thing anymore, as a matter of fact my husband can walk if he wishes, but prefers the chair.

 

I like your doctor without even meeting him, we should all be so lucky!

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One of the hardest things for me has been this possitive attitude thing and feeling unheard. My idea of positive attitude and others seems worlds apart. To me,saying yesterdays news was no big deal is just delusional not postive. I think what scares people is what ifs so the thought of prosthetics comforts me rather than worries me. It gives me a solution. Perfect? not at all but I know I can live with it.

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Wow I missed allot. I think the guy should have sugar coated it a little. You still have more tests to complete. And I think it is way to much information for a preliminary visit. Is this the cardiologist or you PCP ? And doctors do not know everything. They mis-diagnose everyday. And their is hope and other probabilities. Can you see another specialist for another opinion? I seen two nuero's when I had my stroke. One said I had a stroke the other said I had MS. The guy that told me I had MS was wrong. It was my first visit with him. Wait until all the tests come back in. You are a survivor.

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Know what's under all that sugar-coating? The truth...the truth doesn't change no matter what you put on it and all that sugar will rot your teeth! (if I had any) I can do better and make better choices if I know the facts. And though three years doesn't sound like much, alot can be done in three years to make things better. For now other than lots of doctor visits nothing has changed. I am still in one piece

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Jamie, I am so sorry to hear your news. Just stinks. It would definitely rock my world. But we all know about that, don't we? It does sound like there is quite a bit more evaluating to do and that may give different answers. Clearly, there is something going on that brings the doctor to that conclusion. I say, good on him for listening to you and being honest. You asked for it and that's what he gave you. He also qualified it but he treated you like you wanted to be treated.

 

Just remember that a lot can change in 5 years in medicine. I was an ER nurse for a number of years and took 5 years off to raise my kids. When I went back, we were able to give medications to people having a heart attack that reversed the damage before our eyes--changed the EKG back to normal. It was stunning to me at the time. Now, of course, that can be done for some strokes as well. We couldn't do that when I left and we could 5 years later. Certainly no guarantee anything like that will be true for you but there might be something on the horizon that can shift your outcome too. Of course, as you have already mentioned, this same transformation is going on in the world of prosthetics as well. There are much better options now than there used to be. I wish you all the best as you go through the additional visits and testing.

 

I'm so glad the transportation has worked out! That gives you so much more freedom to get out when you need or want to.

 

You will be in my thoughts and prayers (if that's okay with you...). ~~Donna

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Thanks Donna. Of course that's okay with me. All things being equal, the posibility of amputation doesn't bother me. It's other things that will be effected that do, but again things could change there too. I'm sure I'll have my "stinkin' thinkin': moments but I'll be okay one way or the other.

 

Jamie

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I read this, and then everything here hit the fan, and I didn't get a chance to respond. So, I'm dragging back to do it. I must be the only one here that doesn't know why they would need to cut your legs off, because everyone else seems to be accepting it, sadly, of course. Tell me, is it diabetes or what? I can't even concentrate on the other things you said, because my mind is still going, why would they need to cut her legs off?

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Sandy,

 

I don't know this but I don't think other responders have accepted anything but are just supporting me in what I was told. I'm not accepting anything yet either except a likely/strong posibility based on what the doctor saw and my medical history. As most have said, three years can change a lot and test results could show other options. At this point, while this looks to be what the future looks like, nothing is set in stone.

 

Diabetes is one of the contributors but also heart disease and others. Alone, any of them wouldn't be as hard to manage but combined (assuming that's all there is) stopping the progression is less likely, so that's why they're going to do tests.

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Thanks for answering me, I guess I have one of those minds that just latch onto the details and can't stop thinking what? why? ack! Someways strokes are good teachers. That sounds weird... but I think the fact that a friend of mine had a stroke years ago, helped me a lot when Bob had his. If his had been the first bad one I'd seen, I'd been a lot more wigged out, but I knew how my friend had made it thru it. So, I see where you are thinking you are kinda used to the idea of wheelchairs anyway. You never know how things will turn out, with the future and new discoveries, but you have your strength to hold onto while time sorts it all out. Again, thanks for the answer.

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I think I understand very well. I question everything too. way too much sometimes but it's how my mind works but sometimes while I'm busy over analyzing, I don't notice how it appears to others and to them it looks like I'm freaking out. I often say that I'm strange because most people say "Look at the bright side" but then I think "I am not worried about the bright side! Bring it on!" It's the other side I need to figure out lol

 

It confuses people sometimes but works for me. When I was younger I thought I'd live forever...and so far so good!

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Jamie I just saw something you wrote at the top. About how some think of looking on the bright side as being delusional. Many years ago, during a psych visit for Ray, I was telling his doctor how Ray's whole family does the glass half empty thing and I couldn't relate, since my family could always find some kind of bright side to any situation, no matter how dire. You know what she said? That my whole family was in denial. Thanks for that diagnosis, doc, and have a nice life, if you can!

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My psychiatrist said the sae thing, and my psychologist spent a lot of time with me talking about it because of my family history. People deny reality for different reasons and not all are malicious but still, I just can't get anywhere except by facing the hard facts.

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