Things that have helped me go through this is another lyme patient that I email almost every day. She has been a good support person and I think started treatment a year or two before I did.I have seen her go from being bedridden to having days of an almost normal life.
Seeing my lyme doc every 3 months has helped too. He always gives me hope. He has been through it himself.
Answers to prayers and some prayers that I didn't even send up.
Coming here to lymenet and reading a post of another success story.
And I think last but not least....those days when I am able to get out and about for a short time or those moments of being reminded of what it is like to be normal.
They keep me going in hopes that I will have more of them.
I do believe I will recover. I just didn't think it would take this long.
I also made a trip to pick up a power chair that a man with AL's disease donated to me.
I was tested for AL's disease due to my syptoms. I am so thankful that I have lyme instead of AL's.
This man had a positive outlook. I forget how long it took him to get to that point.
He was in a reclining power chair all day. Had to have his cup of tea held for him and drank it through a straw.
He was thankful that he was still able to enjoy food. He said that most people with AL's who were at his stage were being fed intervenously.
I also know others who are going through much worse than I and have to remind myself of this.
I also avoid negative people. I am amazed at how quickly I can get pulled down by being around complainers and negative people.
And I do have my down days. I just went through 4 days of being flat on my back after being able to sit upright for 3 hours a day and getting out and about for about 4 weeks.
I wouldn't have been much help to you during those times. Those are the hardest for me.
Finances are also a big issue. I am still struggling with that but doing what I can to bring bills down and increase food and household income.
While at a doctor's appointment this week, I met a lady about my age who said she was sleeping in her car. She had applied for SSDI, but still hadn't heard anything.
She also had applied for low income housing but the waiting list was over a year long.
I, too, could have very easily had been this lady if friends and family had not helped me keep a roof over my head while I waited for low income housing and SS to be approved.
I also try to count my blessings or focus on the positive when I start to feel defeated or loose hope.
I continue to look for stats to give me some kind of clue as to how many are able to return to a somewhat normal life.
So far, I haven't found any.
You might want to listen to a hearing that was held this year in Sacramento.
It is encouraging. You will hear several people talk about their story. The good news is that they were able to travel to the hearing and talk about their story.
One of the doctor's presenting doesn't mention he was misdx for 5 years before being treated for lyme disease. He is another success story.
If interested, go to www.calchannel.com
Click on webcast
Type in February in the archives
Scroll down to Feb. 25 Health and Human Services
Click on watch.
There is a 9 minute lead in.
It is a two hour presentation so get comfortable.
It is a great resource of information and gives one hope.