enjoytheride

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About enjoytheride

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  1. 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.
  2. I heard that many doctor's were not taking new Medicare patients but continuing to see their established patients. But your doctor actually said he will not see you anymore? That's scary. His office should at least make arrangements for you to be seen by someone else. And give you time to make the change. Is there any chance that you have been caught in the office machinery and that he would not want this policy to apply to you?
  3. How great to talk to someone who will explain things. I know that if I don't understand something, I am constantly worried over everything. Congratulations on having achieved something really good with your visit.
  4. I had one removed from the fold under a knuckle. It was done in the hand surgeon's office with a local. The surgeon said it was tricky due to a nerve that ran right next to the spot but it was totally pain free. I wasn't even aware of when the doctor finished til he showed me the thing. I even sneaked a peek (very briefly) while he was working. I have also had another one taken out with a general anesthesia and I can honestly say it was not worth the bother. Both ways had some pain when the meds wore off but even that was not as bad as I was expecting. Whatever you choose to do, I wish you every success.
  5. I just want to reach out and hug you. To be told something like that is so hard. All I can say is that nothing is so sure in this world. And that goes for the bad as well as the good.
  6. 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.
  7. How wonderful to hear of your daughter's success. Only a first for goodness sake. I hope your problems resolve as successfully.
  8. 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?
  9. That is rough about the digestive problems. So far my problems are much less severe. But I have found that if I limit the different types of food I have at any one time, I do better. So I tend to eat some fruit (for example) then wait a couple for hours for an egg, then some vegetables, etc. Commercially prepared foods are frequently harder for me to digest. I don't know why but I definitely do better on stuff I make from scratch and whole foods. But everyone is so individual. I hope your medication comes soon.
  10. OK- with the warning that I have been retired from SSA for years and it might have changed......... On Social Security- not SSI- a disability is defined as a condition that keeps you from doing "substantial gainful activity (SGA)." Earnings has under a certain level is assumed not to be SGA (amount changes each year- you need to look it up.) Earning over the higher level are considered to be SGA unless some of the earnings are discounted as a subsidy. Between those two levels- it may or may not be SGA depending on a number of factors. This is for wages- for self-employment, it is the value of the services as a person can do real hard work yet still have a loss due to non-disability related factors. Some of the things considered in this evaluation are hours of work, whether it is equivalent in time and duties to other who earn their livelihood doing the same work, etc. This is the short version- I used to spend hours and hours doing these evaluations and they were always difficult. There are also things like trial work periods where the work is evaluated only after a certain length of work. There are lots of rules for this too. If you want the straight scoop, go the the SSA website and look up the "pamphlets" for Substantial Gainful Activity, Trial Work Period, Continuing Disability Review. Be careful to review the rules- a return to SGA within 12 months of the onset of your disability can mean immediate termination. If you've been disabled longer than 12 full months, all the other Trail Work Period rules apply. Sorry but there is no cut and dried answer for all cases except for the lowest level of earnings.
  11. 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.
  12. I had been told that I had them but had never worried about them until someone mentioned out of the blue that I had a "rash" on my face. Surprisingly I don't worry about them. I worry over every ache, pain and irregularity- but not that.
  13. Miocean- good for you- go get 'um.
  14. Little holes or big holes?
  15. Thank you all- I appreciate the sympathy. In fact I needed it. I did not have a clue the whole time except for the doctor's confusion about what I wanted. All the signs said "rheumatology" but they run different clinics on different days. What was really funny now that I understand better was the note of glee in the doctor's voice when she looked at my hands and said, "Looks like a bit of osteoarthritis there." It was probably the first thing she saw that fit into her specialty.