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dragonfyre
Male, 58, Bremerton, WA
"missing the Dragonlady. physical pain is terrible"
2:55am, September 6, 2009
My New Reality Mood
Tuesday, September 8, 2009 | A Sad story

Judging by the progress made and even taking in my account the joy of having a good dr again there are some things that I need to get used to I guess. My new reality if you will. At least at this point no one has come up with a way to work around these problems. No one seems able at this point (so I suppose there is still hope, I sure hope so) no one has been able to define the cause of most of my new symptoms or problems much less figure out how to resolve them.

 

I haven’t been able to really work since 92 when I went on social security disability. In that year I was in the hospital 4 times in 2 months and they were unable to resolve anything, only to relieve the symptoms and that only partially. (Chronic DVT or thrombophilia (they finally came up with a name for it)) accompanied with intense pain, heart attacks, pulmonary emboli, and the occasional stroke. That has not changed over the years. If anything it has gotten worse. Under social security disability I ended up in a local clinic that did a sliding scale and not very good care at all. During that time things just got worse and worse but with social security to live on I didn’t have much choice. They were managing the thromboses ok I guess. But any new stuff that came up you can forget it. But it’s what I could afford. I knew I wasn’t getting the help or treatment I needed but didn’t have much choice. They didn’t even have hospital rights when any of their patients ended up there. Including me of course. The only reason they found out was because I filled them in when I went in for follow-up work.

 

That sort of sets the stage for the current stuff. Fortunately I was able to recently find a good dr. that accepts Medicare assigned. Made me feel like I had died and gone to heaven. He even listens to me. LOL  Anyway, I had some problems that resembled a stroke (do to bad care and bad prescriptions and went to the ER where they were able to diagnose it properly, adjusted my meds (I quit one of them entirely and it was totally unnecessary and caused the primary problem that put me in ER) However in the mean time I have fallen many times, lost my focus completely making it difficult to do that little bit of work that I do (web site development) with any consistency. Fortunately my clients are very understanding and are willing to still work with me in spite of the delays. Apparently in one of my falls I damaged my spine. Now the pain is even worse then before, my ability to focus on work is almost gone, I still fall a lot in spite of my cane, I have extreme difficulty walking and at times even just standing.

 

At this point I am hoping my new dr will be able to resolve things so I can at least function in some way or another but my hope is slim. Part of that is sure to depression I am sure but regardless of its cause I still have to deal with it along with the depression that seems to accompany it.

 

I don’t know what to do. I will keep the new dr and hope that he will be able to fix some things or if not at least advise me properly as to what options are available. At this point I want to retreat into my cave just wait for the end even though I know that isn’t the proper thing to do and will not allow myself to do that. Apparently this is going to be my new reality and one I  am not at all happy about but don’t see any options. Such is life I guess.
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New Dr and pain Mood
Sunday, September 6, 2009 | A General Update story

I saw my new Dr today under very unusual circumstances. In my previous entry I discussed the new pain and what not. It just got worse and worse. I was trying to hold out until my appointment but today I just couldn't handle it any more. Called the new dr and spoke with his assistant and explained the situation to her and on a Friday before a holiday they saw me. I was even just  a touch late. Again he took the time to do a complete job. Ran through the tests and diagnosis and stuff. Overall He probably worked with me about 40 min or so  (very unusual) and made an educated guess (which is all any dr does) on the cause of the pain, gave me some sample pain pills and also did an INR for my blood and stuff and we discussed his diagnosis and what I could do to alieviate the problem or at least get it down to a managable pain level.  Last night was a little rough (aprox 2 hr sleep) but today the pain is down to a manageable level and was even able to get a little bit of work done and expect to actually sleep tonight.  My first impression of him from the original consultation is even better then before. 

I'm still falling and bumping into things but that is something I expect to take longer to fix if it is even fixable.  My biggest problem of the moment was the pain. I did a couple of extra things and that made it even better. Won't say back to normal but at least I can function and work a little bit and expect I will be able to sleep tonight. Anyway I am still a mess but I do see things as improving overall with this dr.

He seems to take the time to actually listen to me, addresses the root problem rather then try to make something up as my previous dr did and I fully expect that this will continue to work out to be an excelent patient/dr relationship. All of this after almost 5 years of substandard drs. I am totally pleased and impressed with him.

 

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Adjusting the scale again Mood
Thursday, August 13, 2009 | A General Update story
Over the years I have discovered that I need to adjust the pain scale. several years ago I learned that what I once  cosidered to be a 9 or enen a 10 on the pain scale was curretnly about a 2 or a 3 as I had gotten used to the pain. I am afraid that the scale has to be adjusted once again. What I as little as 2 or 3 weeks ago would have scaled out at an 7 or 8 I would now call a 4 or a 5. I will probably get used to it again. As well as the noticable lack of mobility. I don't dare bend over to pick up something from the floor   unless I have something to brace myself with. Walking with a can was mostly for when I needed or wanted to take longer walks or knew that I would run into (gulp, shiver) stairs.  Now I need the cane just to walk anywhere plus I'm sure someone looking on was sure I was either high or drunk as walking in a straght line was getting more and more difficult.  I guess we all learn to adjust both our thinking or our actions based  upon the progression of our illness or condition. I am not at all happy with it as I had worked hard on dealing with the pain and the physical problmes that went with it. Now I  apparently have a whole new set of rules to learn. I am sure I will be able to but needless to say I am not at all happy about it. I was used to things as they were and had learned to deal with it so I was able to get done the things that needed to be done. Not at all sure about my abilities under the new system that is now imposed upon  me. Not a lot of choice but such is life I guess. I will persevere regardless.
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