galed7956's Journal

Tomorrow I go to see the Endro doc for the first time and here's hoping that alll this feeling horrible or sick ends.  This color is really .  There that's a little better.  I hope that he can help me because from what I hear from people here and from the National Adrenal

Assoc. I am supposed to have some kind of steroid plus an emergency kit.  So lets see what happens tomorrow.  I know that my Neurologist doesn't want me on steroids although I think there are some in the Florinef.  So far the blood pressure is holding up good and I think that I didn't take my med's on Thursday and that's why I had the "crisis" if that is what it was.  I still can't remember if I took the medicine or not.  So it's over and I will mention it tomorrow because I want to find out if it truley was a "crisis" and if it was why is it taking so long for me to get better from the other day.  Also my Neuro doesn't want me on steroids because my knee is about to blow and there are other reasons.  I wish I could get a doc that could take care of everything plus would know EVERYTHING that has happened in the past.  It used to be that way when I was a kid.  We had doc's that took care of everything and also did house calls.  Even the dentist's back then did everything that needed to be done.  I wish that everything was like it was back then but as time goes on everything changes.  I was talking to the guy who usually works for the place where I get all my durable medical equipment from (everything from the Permobil that I just got down to the nebulizer I have) and this company has been here for over the 24 years that I have been ill.  They had a store in the town I live in and the only things that it carried was besides braces canes,  hospital beds, and other things except electrical wheelchairs and scooters.  They had maual wheelchairs and I think had oxygen equipment but until the end when one of the owners had a major heart attack they had these little black scooters with the batteries under the seat made by Invacare (Ed said they are stil made).  But then the brothers sold the stores out to a company called Air Supply Seating and Mobility.  The name of the store stayed the same - Youngs Medical Equipmnt but moved outside ot town more towards Mt Pocono.  Well now today Ed told me that a new company has bought the whole company and the new owners took over Oct. 2.  I had ordered the chair before that so I am alright still with service on whatever I have.  I don't know yet about the O2 machines because Medicare is working on trying to change the laws to so that people can  own them instead of always renting them.  Eveything that I had rented besides that is mine now.  I was renting the hospital bed but I guess after awhile I eventually own that because I got notification from another company I used that I was the owner and no longer a renter.  The manual wheelchair I own and now the Permobil also.  The Scooter I got from somone else and I have always owned that.  So the only thing I rent now is the O2 machines.  I pay rental for service every month and the machine rental is included in the cost.  The thing that gets me is that they say they were here to check the equipment in the rental charges but that's not true - no wonder Medicare is so messed up.   But I asked about owning the 02 equipment and they said it's got to be rental now but their trying to have it either rental or ownership.  I have already had to have the filling machine changed because of problems with it.  I also have an air pad on my bed and that's supposed to be rental but I haven't noticed a charge on that for awhile so maybe I own that also.  Dr Gupta told me that when I move we will get together on ordering an air mattress for the bed so that I can be more comfortable.   I always kept the air mattress a rental because if it gets a hole in it then it has to be changed.  I had one go bad already it ripped apart at the hoses because someone didn't put it on the bed right after we moved and it stressed the rubber around the hoses that fill the pad.  But now this company that took over is making Youngs a pretty basic business like it used to be.  Ed said that they are going to offer Invacare and Pride (Jazzy and I hate them had one piece of crap) electric wheelchairs.  He said that the Permobil I got people that can use their head to control them get them.  In other words parapeligics that have to use their heads to control the wheelchair can get them but the only 2 that will be avbailable with the new co is the one's that I mentioned.  The name of the business will be changed and just basic stuff will be sold.  I asked him to come over here to chedk out the Permobil because it wasn't going as fast as it was supposed to a couple of times.  Then he told me that Medicare feels that anything electrically run like scoters and wheelchairs should be used in the home only not outside to go to appointments,  etc.  I heard that already from Medicare and told them how I felt about that decision because I don't ever hold anything back.   They are afraid someone will get injured outside and Mediare will be involved in a lawsuit.  I told hte woman and also Ed today that the Permobil was my freedom and he shook his head and agreed.  I asked the woman on the phone how she expected people that couldn't drive or walk because of a disability to get to the store,  etc?  She didn't have an answer but she reiterated that according to Medicare they are only supposed to be used in the home.   I wonder why we have ot have ramps on our homes for then.  I also wonder what the world is coming to for handicapped people because we have enough problems living and feelling like a healthy person but yet they take us down the spiral even yet.  Every time I turn around I am finding something else out that has been taken away either money wise to help us or just general living like anyone healthy.  I told Ed today that every time I look at the Permobil I think that I would trade that in for the abilty to be healty and ability to walk and work like lots of other people.  I am thankful that I got the Permobil but it's not good news to have something that does everything except cook,  clean house,  work,  pay the bills,  etc.  What I'm trying to say is that it reminds me every time I look at it about what has happened in the past an all that might happen in the future.  i just don't want to look at it anymore.  And I'm not going to stop using it to enjoy being outside to go to doc's appt. and the such.  The woman from Medicare told me that even though Medicares policy was to use electrical scooters and wheelchairs inside people of course aren't don't listen to them anyway and still use them outside.  I was also talking to Ed about  my next door neighbor's son and losing his manual wheelchair that they were renting from Youngs (Air Supply or new co) because he had gotten a Jazzy from a co that advertised on TV.  He said that's the reason it was taken back by Youngs.  He said that if they would have bought the Jazzy though Air Supply then they would still have the manual wheelchair.  He told me that there was a gentleman that needed a manual wheelchair and was interested in an electric wheelchair.  So Youngs rented him the manual wheelchair and he went to the wheelchair clinic at Good Shepard where I went to try out all the electric wheelchairs.  After awhile of trying out what they had a Rep. from Youngs was there to help with measurements and the paper work when he told the girls that he decided to deal with another co.  Well Brett the rep from Air Products (or youngs,  new co) immediately took back the manual wheelchair.  The gentleman asked him what he was doing.  He told him that if would have dealt with Air Products and gotten the electric wheelchair then he would have been able to keep the manual wheelchair.  I guess it was a very uncomfortable situation but it was Brett's job to take it back based on his decision and the man had to get home using one of Good Shepards wheelchairs to get him to the car and then make his own arrangements at home.  I also have learned that the scooter store doesn't fix their own scooters.  I was talking to the Rep for the Scooter and he told me that he felt bad for the elderly and also for the young who have disabilities because they make the mistake of buying an electric wheelchair or scooter from a drug store or Scooter Store and  then if it broke down they would call the place that they brought it from and tell them that their chair or scooter broke down and they needed someone to service it and then they would be told that they didn't service that equipment.  He said then the people that need service are told to call him because he handles parts for several companies including my scooter and he hears these stories and tells the people that he only sells parts he doesn't service them.  He says he feel so bad at times and feels like gettting out of the business on those days.  He said to me one day that he couldn't do something because he "lives in Chicago and it's quite away from here."  I am fortunate because I have Ed who looked at it and gave me a basic idea on what is needed.  I can see what is needed as far as the shroud is concened.  So since the hole in the bar that is the problem is oval now instead of round that means that bar is no good so that has to be replaced along with other parts.  Jim offered me a used front end that has been improved and is not the same as the front end that I have and he'll knock so much off and then I mentioned I want the shroud and also the inside handle bars that are there for people with carpal tunnel which I have but you can rest your hands and wrists on those bars instead of hanging your arms down.  I want to use the scooter to go shopping and for the times when I have to get things and the Electric for doc's appts. and going on Pocono Pony like tomorrow when I go to Allentown.  The scooter rides harder than the Wheelchair which rides like a limo but with the wheelchair I'm a little uncomfortable because there is nothing in front of me.  But this is the whole lousy truth about how things are and I know that it's going to do nothing but go downhill.  For every  8 Medicare/Social Security agent that  retire or leave they are replaced by 1 person.  Now you know why you have to wait so long if you call Medicare/Social Security.  I hope I don't have to get more than the air mattress because I don't know what the future holds.  I also have to make sure that I don't put a hole anywhere in the air mattress even though an air mattress has individual chambers of air.  I had one in the hospital once and it was llke trying to lay on a balloon.   I would try to lay down on that mattress and I would feel like my body wasn't straight that my butt was down and my legs and arms were up somewhere.  My upper body was even with my legs.  It was so weird.  It was also a struggle to get the bed the way you had to get it to be comfortable but once you got there you were in heaven.  Nothing hard or poky or causing parts of your body to hurt.  Well I better go now because I have to use the razor and cut my hair,  replace my Mother's dial phone with a push button,  take a shower then come down and change my sheets then off to bed.  Take care everyone and I will be writing a journal entry to tell you what happened at the Doc's tomorrow.    xoxoxoxoxo to all    galed