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Everything posted by enjoytheride

  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. 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.
  15. I'm not sure why I'm posting this except partly as a whine and partly as a heads up to those of you making such appointments. I had asked my local rheumatologist for a referral to a scleroderma center. I did not hear back from them directly but I did get a call from the scheduling people there. That lady said I had an appointment within a week but I told her that it needed more than that amount of time to make arrangements so she scheduled me with another doctor in 3 weeks. Great- whooeee for me. So I make the 10 hour trip down on the bus, have a two day stay at a hotel and show up first thing Monday May 2 at 9:15 am at the clinic. They were running late but I did see the doctor. With my extensive file in hand. But her exam was puzzling to me. I explained the things that I had felt were unresolved with my local rheumatologist and the problems I was having with meds. It took a bit for me to realize she didn't know why I was there. So I told her about the differing diagnosises and the conflicting statements from my local doctor. She said okay. Looked me over, said it was nice to see someone with CREST doing so well and sent me off for a lot of blood tests which she said she would discuss with my local Internists. I headed home. I've not heard from her since but the whole thing seemed very superficial. Certainly not informative. I started looking up her bio on their website. She is a specialist in osteo-arthritis forcusing on hip problems! So I scouted around the site some more and found that the appointment I had was with the arthritis clinic, not the scleroderma clinic. Aargh! I have just spent a $1000 (hotel, bus tickets and co-pays) to get to the wrong doctor. Hopefully some good will come of all the blood tests but at the least I will not feel that I have had the best advice. I don't know if my local doctor got the referral to the wrong place or the scheduler was incorrect or I never made it clear enough to begin with although I can't ever remember complaining of arthritis although my fingers are swollen and the joint twisted. I could just cry. Or at least whine a lot here...
  16. I think I know what you are mentioning. The word sort of seems to drift off to one side until you re-focus on it. And this repeats. But of course it is not the word moving, it is the eye moving. I can remember it happening to me. It was when I was really stressed at work. It did not last long for me and just disappeared on its own. Good luck on your appointment.
  17. Re: boxes. I have moved a lot in my life and can tell you that letting boxes sit for awhile has one good result. By the time I got around to unpacking, I had forgotten the things that were in them. It was like holiday when I opened them and found so many wonderful things. The nicest part is I usually loved everything I "got" because they were just what I wanted. At least that is what I thought when I bought them originally. And pretty material over boxes make lovely end tables. And who knows what boxes hide behind the sofa. So many options. I'm glad you feel more upbeat.
  18. It will be good to get the latest information and treatments. Thank you for letting us know about your appointment and it will be very interesting to hear what they have to say. Outside of knowing the Beatles (sigh) started in Liverpool, I have no idea what it's like there. If you all have been having the sort of winter that my end of the USA has, that might account for some of your depression. I really react to the weather and always brighten on a sunny day and crash on a gloomy one. By June, you will have your appointment and hopefully beautiful weather to go with it. Warmest wishes.
  19. That's great- I'm sure it will come back.
  20. I was writing a long and involved reply to your post when the power went off. So I'm taking it as a hint to keep it short. Maybe you have a pharmacist who can go over your medications and help you group them to minimize side effects? I know that some of the pills I take make me have to get up many times a night which of course makes me feel really tired. Changing when I take what pills has helped lessen that effect. Otherwise, if you are not satisfied with your doctor, then a second opinion is never out of order. Oh and put some sand, a seashell and some ocean water in a bottle and take it home with you. Then you will at least have a reminder at home of what you love. (((hugs)))
  21. A very warming thought and loving expression- thank you.
  22. Sorry about the post- I thought you were talking about long term care insurance, not long term disability. I can see that would be a real problem to obtain after any medical problems.
  23. Long term care policies are very expensive even if you enroll at an early age and keep it up. I have had one for about 10 years and every month I wince at the cost. It is burdensome. One thing that might help you , if I remember right, is part of the Obamacare legislation. Didn't they have as part of it, a creation of long term care insurance? I think it might be part of the "pool" aspect of the law. You might have a look on the net about this- you might have an opportunity there. Good luck as I know that Medicare does not provide coverage for custodial care which is what most people really need eventually.
  24. Today I felt so good I was looking for something to do (determined to ignore the giant dust bunnies in the house.) I decided to take my old horse for a walk down the road since I no longer have a dog to walk. I haven't ridden in two years so my girls have not been off the place in that long. The weather was great, the neighbors amused and my 19 year old mellow mare stuck her tail straight up in the air and stepped like a show horse. After the walk I stopped in front of the drive and stood there while she "mowed" the grass for me. All around pleasing couple of hours.
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