kam
Honored Contributor (10K+ posts)
Member # 3410
posted
It has been 6 years now since my health went south.
I keep thinking I'd like to go North to Alaska but need to wait until my health is better or have a good traveling companion.
Never thought I would still be this low functioning when this hit.
Wondering if abx were really helping or if I was just learning to adjust and pace myself better.
So, I stopped all abx.
Wow. I forgot about a lot of symptoms that I use to have.
Went back on abx.
It is a combo of pacing oneself and abx and diet and many other things.
Never thought I would still have the workmen's comp case and CALPERS unresolved.
That is a case of me not having what it takes to complete the next step.
Hoping to be able to do this soon.
But, not today. Very low functioning today.
What will the next year bring?
I hope more water therapy and improvement.
I was at a point where I was not in pain all the time. I'd like to get that back.
I think it was a combo of getting sleep, the abx, diet and water therapy.
All of the above stopped at the same time and the pain returned.
Started back on abx. It has helped but still not back to where I was.
Waiting to see if insurance will approve more water therapy.
Waiting to see neuro to get help with sleep. Sleeping meds I was taking just stopped helping.
I hope to find a way to get sleep every night.
I hope to resolve the CALPERS and workmens' comp claims.
I hope to be able to do even more.
I am able to get out daily now with Rosie for her outings and exercise.
I have times when I can do my own grocery shopping but I would like that to be more consistant and reliable.
I would like to get a hitch/lift for the car so I can have more independence....got to church, go to the grocery store, go for outings.
I'd like to figure this provigil thing out.
I did well on it one day while my friend was here.
Took some the first day and was still in a fog but able to ride in the car for about an hour.
We were in it for an hour because I was so out of it I did not realize we were lost.
Nice area to be lost in though. Beautiful country.
I'd like to get the small invacare power chair sold so I can use the funds to purchase the lift and hitch for the car for my larger power chair.
Need to make sure there is even a lift that will support my power chair.
I'd like to be able to do the hot tub or sauna thing more routinely at the gym.
I'd like to keep in better contact with my lyme doc.
It would be great if I had doctor support from a doc with my insurance too but not realistic.
I'd like to be able to take more showers doing the week..sit down or stand up showers.
I'd like to be able to sit upright and move the computer to the desk instead of next to my bed.
I'd like to be able to go to the movies.
I'd like to be able to put the dishes in the dishwasher and put them away.
I can now take the trash out whenever I need to for the most part.
I am able to usually eat 3 meals a day and do one or two other things.
I am higher functioning although I have a long way to go.
I'd like to be able to do my own laundry and put it away.
I'd like to be able to get my things unpacked and organized.
I'd like to be able to go to church/bible study at least once a month.
I'd like to be able to read novels again.
I really miss the outdoors. I like to be able to be outdoors more either via the power chair or on foot.
I'd like to be able to listen to music again.
I believe these things are all do able the next year.
But, I also believed I would have been doing these things by now.
I have a lot to be thankful for the past few months.
I had a car donated to me. The starter in it replaced with no cost to me.
Two power chairs donated to me that recline and have made a world of difference.
Moved to a quieter more friendly apartment that I can get to more things via my power chair.
Have had others provide supplements and xango.
First time since seeing LLMD I am taking the supplements he has recommeneded to me too.
I have had help with household chores and there has been food in the frig that is lyme friendly.
There have only been a few days since moving to new place that I have not been well enough to get Rosie out to toilet myself.
STill getting the head stuff but it is not as bad as before. I am usually able to keep water and food down when it hits this time.
My hope is it will continue to become less and less.
Able to go for short drives now and see more of the beautiful area I live in.
Had a computer and monitor donated to me when my very old one retired.
Slowly becoming more of the part of the living.
I have gone from being bedridden for the most part to being able to be out and about daily in the power chair for short periods of time.
I also have noticed the brain improving.
It is rare that Rosie barks at me now because my brain has gone somewhere without me or I am out in the middle of traffic in my power chair wondering how I go there.
(This has only happened once since I have had Rosie.)
I am more aware of my surroundings when I am out and about now and able to do a little more multi tasking.
Hair has started to grow on my legs again and under my arms. I am now needing to shave again.
I also am getting sticky and sweaty and in need of a shower. Don't know if I was not sweating more or what.
Went through a stage when I had the night sweats again, but they seem to have stopped again.
They come and go.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hey there Miss Katherine,
I'm pleased to know that some things have improved in your 6 years of dealing with this illness. That sure is a long time to try and keep your spirits up, but you do a tremendous job at it.
Hoping that your next anniversary finds you feeling a whole lot better!
Much love, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Kam,
Love your positive attitude. You had mentioned that when you stopped the abx, you were hit with some symptoms you had forgotten about. Do you mind if I ask how long you were off them before this hit?
I do hope you make it to Alaska. Change of scenery is good for all of us. Keep that carrot in front of your nose and good luck. You are a real trooper.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
You have also managed to
Be an inspiration to me
Be an incredible friend
Be a Gift from God.
Missed your postings.
Was getting ready to PM you.
You are always in my thoughts and prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
you are truly amazing, and a huge inspiration to me.
i want you to know that.
i'll definitely keep you in my thoughts & prayers.
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Kam, What all the more eloquent people before me said!!!
In the 2 years, and probably more the last year, I feel like I've witnessed you making tremendous strides. Way to go, Katherine! Keep up the good work.
So, what kind of novels would you like to be reading when you start again? I'm not reading much lately, either, but I have access to a lot of books. We can start reading and releasing them in the 'wild' in AZ.
(and I'm sorry about the having to shave thing; i'd give that one back)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Thanks for all the replies. Going through a rough time right now so will read them when the brain clears.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
OK The two days of the head stuff seems to have broken.
RE: how long I was off abx.
Sorry, I am not sure. I seem to loose track of time.
I just know I had the head stuff. Started to cut back on abx to help. Tried stopping all together to help after just taking the ketek and actually feeling worse.
I am guessing perhaps a week. I felt better at first but then as before, started feeling worse.
RE: What kind of books I would like to read. Hmm
I had some in mind the other day and know can't recall. Nevada Barr perhaps. She writes mysteries based on her experience as a ranger.
I also like the pioneer period.
And Christian Fiction.
I think I have read all of the Thoene's books.
I liked Amy Tan's Joy Luck Club but that was when I was higher functioning. Not sure I could handle a novel like that now.
It would need to be simple.
I'd like to read the one that the writer of Into Thin Air wrote...his name starts with a K.
He recently put out a book about a guy which I can't recall enough about right now.
Just recall it was a true story and about the outdoors and took him years to write.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Kam,
I just thought of this, but can you listen to books?
I know our library and even some "used" book stores carry the audio tapes for many types of books.
I am going to look for you later this week or next if you think you would enjoy
Listening to a book.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Geneal, I tried that when this first hit and it did not work.
I was able to listen to a couple of story tellers recently which surprised me.
I had taken provigil that day so assume it was the provigil that helped me be able to process what was being said...plus the tone of voice and the rate of presenting the story.
Recall is still a problem.
It might be time to try books on tape again to see how it goes.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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