NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Kam, if you go back and read some of your old posts in this thread compared to now, there's a world of difference.
You're definitely on the right track to health, unfortunately, it takes a long time. Chroniciling your experiences has been a boon to many people here, and a living testimony of what lyme sufferers go through on a daily basis.
You're a wonderful person, with an indeflatable spirit, and many here long for the day when you kick this horrible illness. You will.
I think Buster was a great idea. He's a handful, but a great companion. Pooches are wonderfully loyal, and trusting. It seems you can make a bond with them that almost borders on a sibling relationship.
My Dad trained a lot of dogs over my youth, and some of it actually sunk into my thick skull. If you need help with Buster, don't hesitate to ask.
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kam
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NP,
I logged in to log in. HA! I was feeling defeated today, but your post helped to encourage me.
The brain and body are not working today. Not sure why. I did take a spill in my power chair first thing this am...just laid on the asphalt for a while. Buster stayed with me and licked me in the face.
I got my left foot caught under the power chair and my ankle is swollen, bruised and is missing skin.
My whole body feels like I fell off of my horse or motorcycle.
Hoping to take a epsom salt bath tonight. Hoping it helps.
Doctor's office called and wanted some forms faxed to them. I was not able to do it today. Wish I had what it takes to get the Lexmark all in one printer figured out so I can fax from home.
Wish I had the paper work filed instead of in boxes so I don't have to go through a lot of papers to find one.
NP...this does take a long time to overcome.
And I do know I have improved. Thanks again for your post. Sometimes I wonder if I am on the right track.
I am also frustrated today because I need to figure out how I am going to get to the lyme specialist appointment this month.
He was booked for the usual meeting place.
So, it looks like I need to travel to his main office. Amtrak does have a station in that area.
But, I would need to stay overnight as I can not make the trip in one day.
I am just not feeling strong enough right now to make such a trip.
Perhaps tomorrow will be a better day.
I sure don't know how the people do it that are dealing with much more than this.
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NP40
Frequent Contributor (1K+ posts)
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posted
Kam, what type/model Lexmark printer do you have ? Post it here, and I'll post the instructions for getting it set-up.
Sorry to here about the spill you took on the power chair. You weren't speeding were you ?
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kam
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posted
I got a last minute appointment with lyme doc in Southern CA. This is good.
I also was able to find someone to take me to the bus/train station. Need someone to load and unload power chair.
They also had an opening with Amtrak. This is good.
And I can stay at my friends house in Southern CA. This is good.
Buster will have a play mate and a yard to run around in. I also am hoping we go to dog beach.
My friend will pick me up at the train/bus drop off but will be a little late.
Her daughter will take me to the docs the next day and my friend will pick me up.
Just need a ride to the family reunion on Saturday now and to make arrangements for the ride home.
I also was able to do the dishes and take out the trash and find a few clean clothes to pack.
I am exhausted, but it is good to get these things done. The body hurts and the brain is starting to shut down. I also continue to have shortness of breath or feel as if I am climbing a mountain in high altitude with a backpack when I try to stand on my feet and do these things.
I wanted to stop and get a cup of coffee this am while taking Buster out to toilet, but didn't have what it took to do this.
I also was not able to talk to my mom when she called yesterday asking when I would see the doc next. She spent too long talking about things that happened 40 years ago that she had already told me. My mind can only process so much and then it is gone.
I tried to say the word Friday when she asked when I was seeing the doc next and all that came out was Fa...Fa....Fa.
I also had difficulty last night when I tried to communicate to my friends answering machine and my other friend about a ride to the train/bus station over an hour away.
The good news is that I was able to cook the Chicken Tortellie (sp?) soup last night. I have tried several times before but the vision, processing, and limb/brain connections were off line.
It was easy last night. But, I tried it after being down for 5 or 6 hours.
I tried talking to my mom right after coming in from Bible Study yesterday morning so I was at my limit before she started talking. She is one of those people who zap your energy so you need to be in pretty good shape before you tackle talking to her.
I had been out and about from 7 am until noon yesterday. Two or 3 hours at the Bible Study and the rest of the time cruising in the power chair with Buster.
I had left early to go to the Bible Study because I thought I would let Buster run off leash in the fenced in area at church.
But, they were spraying pesticides in that area so I had to wait a hour or two until he was OK off leash in the area.
So, we cruised around town.
Now, to cruise on over to the grocery store to get cash and hopefully be able to get a strong cup of coffee at STarbucks.
Perhaps I will just purchase some fraps at the grocery store to help me endure the many hours in a vehicle, train and bus today.
I don't know why but the coffee and excedrin seem to help me to be able to sit upright for longer periods of time. Doesn't make sense to me.
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kam
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NP Still trouble shooting that all in one printer. Can't recall what the next step is at this point. It is a Lexmark X2250
I just got back from the trip to see the lyme specialist and the family reunion.
It takes a village to get me places now a days. I am so thankful for the person who drove me an hour or so away to the Train Station, for the people who loaded and unloaded the power chair, for the person who picked me up from the train station and the Amtrak person who helped load the power chair into my friends SUV, for the person who dropped me off at the doctor's office and the one who picked me up, and the person who let me stay overnight at her house, and took me to my daughter's house, and for my daughter and son in law taking me to the family reunion, not minding me staying at their place, and took the power chair apart so we could get it in the Honda to load on the Amtrak Bus, and the person who picked me up at the train station and took me home and the people who helped load and unload the power chair again. Whewph!
One of these days I will just get in the car and go. I am ready to give driving a try again. Well. I think I am ready until I do something stupid in the power chair due to lyme brain.
I had tried to help my friend out by sweeping the dog hair up at her house while I was there. (She has two dogs and then Buster made 3.) I also was able to take a shower, and put the dishes away. But, by the time I got to the doctor's visit in the afternoon...I was in a fog. I will not do that again.
It looks like I will be adding rocephin to my treatment plan again.
I wish that I had written down or remembered to record what was said.
I also recall Juice Plus or some other product being suggested, but my friend has the paper work on that as she is thinking of ordering it for herself.
I need to contact her about that.
It is so good to meet with a doc that still has the same goal you have.....to regain your health...and who believes it is possible. It seems docs such as this are difficult to find.
Buster is in his crate trying to recover from the hoopla.
I need to be in my crate too. HA!
All in all...I was able to sit upright for long periods of time. I did have difficulty with processing and talking at times.
Not sure what is going on with the communication part of the brain. I try to break it done to one thought at a time and one word.
But, even that doesn't work at times.
It happens when I am over doing it and need down time.
But, even with over doing it...I don't have the feeling that my body has been run over by a Mack Truck most of the time.
I feel I am slowly getting back on track.
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kam
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Took it easy today. Had too. Took Buster out for a walk in the am and pm and went to the grocery store.
The grocery store was rough.
Need to recover from trip to doc.
Hope to get more done tomorrow. Plants really need a drink of water.
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GEDEN13
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glad you are back.it was nice of all those folk's to help you on your trip.
i am also glad you get along with your doc.make's your treatment,alot easier.
kam
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posted
Finally got a good nights sleep last night. I would still be in bed if it were not for Buster getting me up and out.
While I was out, I thought like I did when I was well. I had lots to do on my mind and made a list.
But, after I came back and fixed breakfast....I was so exhausted it was down time again. Hopefully, I will recover soon and be able to get some of the things done on the to do list.
I also did not use the power chair to fix breakfast as it needed recharging. Being on my feet continues to take a lot out of me.
My mom called yesterday and after listening to her for a ? amount of time, I had to cut the conversation off. Once again, my brain felt as if it was swollen or something after trying to listen to her. The processing part is still not coming easy yet and takes a lot out of me too.
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kam
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Still trying to recover from the trip to the docs and/or the heat. The heat just may be here to stay until the end of October.
I took a shower this morning, got dressed and ate a bowl of cereal. I was feeling pretty spiffy because I recalled when I couldn't do all those things without resting in between.
But, my body and mind soon crashed afterwards. I had difficulty talking and thinking again. At least my body is not hurting all over like it use to nor does it feel like a truck ran it over.
I got in my reclining chair and stopped fighting it.
Then took Buster out for a short walk in the park. I need to feed him and myself next, rest and then take him out for a longer walk when it is cooler.
I found out that MediCal is paying for the Mepron today. This surprised me but I am glad it worked out that way.
Tomorrow will be Friday and I still haven't gotten the thank you notes off to all those who helped get me to the docs, the paper work for workmen's comp done nor other things which I can't recall right now.
The good news is that the housekeepers/caregivers came today and I now have clean clothes, a clean house, food in the fridge, and a clean bed to sleep in tonight.
It frustrates me that I still can't do these things for myself but I am thankful for them and that the county is paying for this.
They asked me what cold fish oil was on the grocery list and I had a great deal of difficulty saying it is a supplement.
All that came out was s...sss.sss.
I also had a great deal of difficulty signing my name on the form for them to get paid for their work and on a check.
I do this when I have over done it and need down time.
I did try to contact Brian Fallon about a doctor of psychiatry that is lyme literate for workmen's comp. I left a message.
The phone rang a few times today but I didn't anwer it because I wasn't able to talk yet. No one left a message. I guess they weren't able to talk either. HA!
Time to find the scarf's to keep Buster and I cool.
I think the cooling hats would help too.
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kam
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This morning I was in and out of sleep. That seems to be how I deal with things when the brain is not working or feels like it is swollen or has pressure in it. The ears were also doing the pressure and high pitch thing.
Not sure if it is a herx or if it is because I used the brain too much yesterday.
I find that as with physical use....mental use also needs to be limited.
And both seem to be stronger at times and weaker at other times.
The only constant I have found is that if I don't use either for a while, I am able to use them normally for short periods of time.
As if I was running on batteries and needed to recharge my physical and mental part of the systems.
Need duracell batteries. I must be using those cheap ones because they do not keep going as the ones in the bunny commercial.
When my head is doing better...which there is a little improvement from this morning but not enough....I will go back and see if this is possibly herx time. It seems it has been happening about once a month now for two or three days.
I haven't been able to read at night again lately. I sure hope that doesn't last. I really liked being able to read.
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kam
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Not doing well this am. I have that head and eye stuff going on. Did not take meds last night. Don't think I can eat or take meds this morning as I will most likely throw it up. Hoping that if I stay down and don't move it will go away.
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kam
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Hopefully today will not be like yesterday. I was shut down yesterday and couldn't keep anything down. Throwing up even when there was nothing on the stomach. Those days are the hardest for me and the most scariest. IT isn't the vomiting. It is the fact that I am so off line mentally and physically. I have had these days since it started in Oct. 2001.
I am hoping it is over with today and I will be able to function a little bit today.
It seemed to last about 12 hours yesterday. I am still low functioning right now but at least I can open my eyes and am sitting upright. I also am not vomiting.
The next step is to see if I can get dressed, eat breakfast and take Buster out to toilet and run and play.
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kam
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I was able to take a bath, open the windows to let some fresh air in the house and take Buster out to run and play yesterday morning.
But, that was it. So discouraging.
I don't know what today will bring. I woke with the head stuff again...took two excedrin..hope that helps.
I also know I need to get lots of water down me today. I have been short on getting water in me.
The weather was much better yesterday. In fact, I was too cold when I was out and about in the early morning and evening.
I was still dressed for the hot weather and hadn't noticed it changed until I was out in it.
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GEDEN13
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i hope you can salvage a little of the weekend.sorry you are not well right now.food and water should be at the top of "the to do list"...
kam
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Back from taking Buster out. Body is shaking and very low functioning. Not sure if it is because I was not dressed warm enough or over did it.
I have not taken meds yets this morning. This feeling is not new. I just have it less frequently since I have learned to pace myself, give myself lots of down time and wait it out.
Guess I pushed it this am. I will probably recover if I let myself just veg out for a couple of hours.
My mind doesn't want to veg out but wants to get a few things done. Since the body is not co operating, I will veg out.
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kam
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Checked Dove's nest this am. One egg, one baby. Sure hope these little ones make it.
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kam
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I was very discouraged this morning. I took Buster out and once again he broke the ties and hook to the power chair. There were two stray dogs out and he wanted to play with them. I was too weak to do much about it so I just followed him in the power chair for a while until I could do something about it.
In the meantime, one of the large dogs jumped in on my lap and covered me with mud.
I was too weak to get him off. Talking was also very weak.
A lady saw what was going on and helped me.
I came home and took a shower. I was too exhausted to dress so I reclined in my camp chair to try and recover.
I don't know how long I was asleep...two or three hours.
I thought I was making progress and then felt discouraged this morning.
I got dressed and went late to the Bible Study. I met everyone at the leaders house for a pool party.
After staying in my power chair for a hour or so, I decided to try and put my swim suit on.
Walking and dressing were still a problem due to weakness.
But.....my body did great in the pool. I was able to stay in for quite some time.
A big improvement from the last time I tried swimming. Two years ago, I was only able to do one lap and then had to sit on the steps until I got the strength to get out of the pool.
I also was upright from about 10:00 to 3:00 pm today. Hurray.
Yesterday, I went into the next town with a friend to pick up meds, eat dinner and do a little window shopping.
I did very well. I think that was why I was so weak this am.
I am still weak and will most likely be down the rest of the afternoon until it is time to take Buster out.
Buster did very well around the kids. He really likes water and was in and out a lot.
He also helped me get out of the pool. I used his back. He braced his self and I was able to lift myself out of the pool. He also helped me get in the pool the same way. I used his back to steady myself as I got in and to hold myself up.
It is so nice to have his help. The alternative is to get on my hands and knees and crawl until I find something to use to pull myself up.
I still had trouble with Buster laying down and staying down at the patio table as we were eating. I still haven't called and talked to the trainer about this.
I am waiting until my brain can handle that sort of thing.
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kam
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It also bothers me that I can't recall the ladies names in the Bible Study. I do have the leaders first name memorized.
Now, I need to pick one other person and memorize her name.
I also am not sure which child goes with which adult yet.
I am not ready for the classroom yet.
But, I was able to stay tuned in enough to keep my eye on the kids in the pool for awhile.
They all did fine. There was just one moment when I thought I might need to jump in and help someone out...ha...I wonder if I could have done this?
I tried several times to jump off the diving board. I finally figured out I could do it if I just got the end of the board and stepped off.
The brain was not working well enough to jump up and out and in. I still need to keep things simply.
Getting on the board was a problem too although it was very low.
I also had the pressure in my ears but this time it was from trying to dive to the bottom of the deep end. It is the same pressure I feel at times when it is a normal day and I am not in high altitude or diving in the deep waters.
It really felt good to move the body in the water. I know it was good for the body too.
I am thinking I will ask Dr. H if I can't wait a couple of months before starting the PIC line for the rocephin again.
[This message has been edited by kam (edited 04 June 2005).]
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I noticed that you have been having a problem with nausea & vomiting again. I have a huge problem with nausea, and had tried a couple of meds to no avail. Finally I was given a prescription for Zofran and it really helps. It may be worth a try if you have not tried it yet.
kam
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posted
D. Lee Muse...I forgot to mention the head stuff, vomiting, light, no movement, etc about once a month to the doc.
Thanks. I am too low functioning right now to know what to do with the info you gave me.
I really don't want to take more meds, but need to do something.
I over did it yesterday and was not able to move until about noon today. I slept off and on in the recliner. Carpenters were even pounding wooden boards by my head outside and I was too out of it to care or wake up.
Received a note on the door from management regarding checking the apartments tomorrow for cleaness.
My housekeeper was supposed to come yesterday and didn't show. I called again today and was told she had been out of town the past two days.
It is so discouraging not being able to take care of things myself and not having reliable good help.
I think if I just rest more today, I will have a different outlook tomorrow and hopefully be able to do a few things.
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kam
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Hired a new housekeeper/caregiver. I have good feeling about her and think all will work out fine.
I tried to do the laundry while she was here. It was frustrating because it took so much out of me to do so little.
I used the power chair to get to the laundry room, but the multitasking and movement to sort the clothes, put them in the washer and dryer and get them out is still a problem.
The laundry is on my bed and I don't know when I will be able to fold it, put it away, and make the bed.
But, the housekeeper is coming Monday so if I am not able to take care of these things this weekend it will be taken care of then.
I reclined from 1:00 pm until 5 pm yesterday. A friend from where I use to work called and invited me to a retirement dinner for two of the teachers.
She would pick me up, we would then go to the train station an hour away and meet others, ride the train into Fresno and then eat a restaurant across the street from the train station.
I left at 5 pm and didn't get home until midnight.
But, I did fairly well. I had to leave the bar area while we were waiting for them to set the room up at the restaurant. The noise and heat was too much.
And I had to leave the dining room area for a short time and go into a quiet room and regroup as my body was beginning to shut down.
But, I was able to be upright the whole time. Getting up the steps to the second floor of the train was difficult due to weakness but I made it.
I also had the shortness of breath as if I was climbing a mountain with any movement after dinner.
But, all in all...it was great to be out and fake normal. I also was able to listen to the talkative Father sitting across from me at dinner time and when we were waiting for the train. Learned he has been in 3 Who's Who's book and is not only an ordained Father, but a psychiatrist and many other things. He has 8 degrees and was shot 4 times while in the Viet Nam War. I assume that was all at one time.
I wasn't able to take in a lot of what he said but got the main picture.
They also had a picture of Mooney Falls and Havasupi Falls in the Grand Canyon at the restaurant. I had hiked both falls and hope to go back some day.
It was a Basque Restaurant. Great choice. The food was brought out in large bowls and we served ourselves the side dishes which were excellent. We all order main dishes and were served those individually.
The train ride was a joint adventure so the cost was $5.00 round trip. Amazing. Also an enjoyable way to travel and visit with co workers if you have the ability. I just waited until they came to visit with me and did my best at faking normal.
The teachers are so isolated in the classrooms each day, it was a good way to get us all together to visit.
The only thing about the retirement party is that I would have liked someone to have given a little bit of history about the two that were retiring. I know they have done a lot at work. it would have been nice to give them some recognition.
It also would have been nice to know what their plans were for retirement.
The one lady retiring started work the same time I did. We had interview appointments back to back. I recall thinking that if I was doing the hiring I would hire her while I sat and talked to her. I was glad when I heard she had been hired too.
I learned another teacher has been to Australia 4 times since the last time I talked with her. She just came back from a trip and is taking off again.
It was nice to not have all my energy and strength go towards just being there.
I also don't feel like a truck ran me over this morning as I would have before. I think the stamina is increasing....I know the stamina is increasing.
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kam
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Still having trouble with recognizing people. I had 4 people call out my name to say hi yesterday while I was out with Buster.
I just wave. I still don't have a clue who they are or what their names are.
At the retirement dinner, I would not be able to recall names 90% of the time. I just said the lady in pink or the man with the cowboy hat, etc.
It is more than just the name recall. It is recalling more about that person and making the connection as to what contact I have had in the past with them.
I know I know them...but it is all what I see in front of me right now.
I would not have recognized the head of the department if she had not stopped by to say hi and ask how I was doing. This is not good.
One of the teachers is calling me the silver fox now due to the change in my hair color.
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kam
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Very low on resources today. Like the battery in my power chair, I need to be plugged in and charged.
I did take Buster out to the fenced in area to let him run. Someone opened both gates while I was there and I didn't notice it until it was time to go. Glad Buster didn't notice it either.
I also did my 5 minute walk as I was feeling stronger this am. Wondering if that is why I lost my strength. Hopefully it will turn up again.
Have any of you seen it? Perhaps it went out the gate.
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kam
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A couple of cop cars showed up at the site I take Buster to run off leash.
I learned that it is not OK for me to be there. They were very pleasant about it.
What bothered me is that I tried to fake normal while talking with them.
But, whatever it is that told me before whether I was talking to a city police officer, CHP or Sheriff went out the door.
I also recall looking at what was written on his shirt but the processing was gone or something.
I know that a spark went off, but my mind couldn't compute. He pointed out that it said K-9 on his shirt. I wasn't able to read his name right about the K-9 either. I could see it so it was not a vision thing....I think it was a processing thing.
Since I worked with several different law enforcement agencies in the past and automatically checked name and department, it really bothered me that I wasn't able to take this information in this time.
I also am having difficulty with Buster. He does his task work fine if he doesn't have the vest or gentle lead on.
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kam
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I also tried to make a sandwhich on my feet today and was so exhausted afterwards I feel asleep. It was a struggle making the sandwhich. I think it has something to do with the multi tasking. I seemed to be OK on my feet, but perhaps if I had stayed in the power chair it would not have been an up hill battle.
I tried to find my P.J.'s tonight and noticed that the last housekeeper who was here had mixed my sweaters, P.J's, sweatshirts, tops, and other things all together. I need to seperate things again so it will be easier to get something off the shelves instead of having to go through a large stack with a bottom here and a top there.
Frustrating day. Little things became big obstacles. An uphill day in high altitude.
Glad a friend came over and took me out for dinner. All I had to do was sit there and eat it. Didn't have to figure out what to eat, prepare it, pay for it..which is a tough process for me when the mind is not on line, or put things away afterwards.
The less the mind has to deal with the better.
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kam
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Don't know if I wrote it down, but I did get the Abbott form off for the next meds. I think I did that yesterday finally.
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Wow never really sat here and read this topic before and here i was wondering how you were doing... duh just read the post.
Your story is amazing. I think of you everytime i change an ink cart. LOL I actually packaged up 8 more to mail in on Monday can you tell i am a printing fool???
I sure hope you start feeling better and that Buster starts behaving for you.
kam
Honored Contributor (10K+ posts)
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posted
I am down for the count again today. I just threw up again so I am able to write this. It seems I am a little better right after I throw up.
I need to go back through these posts and write down days like this to get an idea of how often this happens.
These days are the most difficult for me.
I am wondering if the glasses of strawberry lemonade and 1/2 of fish hamburger I had yesterday have something to do with it. In other words...sugar and white flour.
Starr,
I will respond to your message when I am doing better.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Had to post a note: I've hiked to Havasupai Falls too, many moons ago. Maybe when we are both better, we can go back together. Oh well, its a thought. Going down might be easier than coming back up that trail. Do you think Buster could give us both a pull uphill?
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kam
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I am moving today but very slowly. I took the power chair to the grocery store. As I was waiting in line, I had several people ask if I would like to go before them.
My response was thank you but I am in no hurray. I reflected on the many times I stood in grocery store lines in a big hurry before lyme.
I also was aware that I needed to just sit and not move in the air conditioned store for a while. I needed to recharge because it had taken a lot out of me to pick up a few items. I could not have done it without the power chair.
And I will most likely not move for a couple of hours now in order to build my strength back up to take Buster out later this evening for his exercise and change of scenery.
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kam
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posted
Lou,
LOL. I too think I can do the going down part. But, I think if they still have burro's, I will ride one of them out.
On the other hand...if we could get a cat in front of us for Buster to chase...we might have a chance!
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kam
Honored Contributor (10K+ posts)
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posted
Starr,
Thanks for continuing to send those cartridges in. This is a good thing you do you printing fool.
Katherine
PS I have a couple myself I need to get off in the mail.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
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posted
Feeling sad tonight until I reflected on the day. I was able to take Buster out in the am and pm, I was able to fix something for me to eat 3 meals today, I was able to transplant a couple of plants, and I was able to do a short lap in the pool.
I was sad because it was the first night of farmers market and I didn't have what it took by the time I got there to get my money out and make a decision on which fruit I wanted to purchase.
But, after I sat for a while and recovered from getting there, I was able to take the task on if I wished.
I also was able to get a few things off of the bookshelves so there would be less clutter.
I wasn't able to do the clay detox today. Didn't have what it took to do that today..perhaps tomorrow.
There were other things I wanted to do also. Hopefully, I will be able to take care of some of these things tomorrow.
I also was able to work on the budget for July and record a few checks in the ledger.
Small steps.
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kam
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posted
So far today, I have been able to take Buster out for his early morning walk, read the local paper...it had my article about Buster in it, go through a few drawers and closet to take out clothes that no longer fit me..still need to sort which ones to keep and which ones to box up, call Dr. S and Dr. F for doctor of psychiatrist....I even was able to record that I had called and left a message, enter a few more checks in the ledger...missing a check book..hoping it is in box with all the papers, record when I last had one of those days when I couldn't move or think or keep anything down...hope to record others later, talk on the phone to a friend for under 3 minutes, call in a refill...this is a most unusual day. Sitting upright at the computer feels like the brain is not getting oxygen or blood to it so I need to recline again now.I also went to the grocery store next door and brought home a couple of boxes that were used for fresh seafood. They are airing out in the front yard right now. My guess is they will be too stinky to use to pack the clothes in. Wasn't funtioning well enough when I picked them up to know one way or the other. I also called CALPERS re: medical retirement. They are still waiting to receive the necessary forms from my doc, work, workmen's comp, etc. Hopefully, I will have what it takes to follow through on this tomorrow...most likely not...I have noticed after a day like today...I am pretty much out of it for a while. I even walked to the local grocery store and picked out a fathers day card...I need to do this in 20 minutes or less because being on my feet is still very limited. And I got the card mailed.
Rest of the evening will probably go towards eating cold leftovers and getting Buster out to exercise.
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kam
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It took awhile of reclining for my body and mind to recover. But, I was able to and Buster and I went out for an hour or so. He laid down in a mud puddle so I had to bathe him before letting him in the house. I had the strength to do this.
Now, I am hoping the day is done and I can recline and veg until bed time.
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kam
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posted
I had the pressure thing today, but no vomiting this time if I stayed down and didn't move. I also was able to take Buster out in the am and in the pm and for a short time to toilet in the afternoon.
He seems to be satisfied to rest right now and I am hoping he will continue to rest until morning.
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kam
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posted
Bit of a problem or two lately. The batteries in the power chair are not recharging.
So, I just took Buster out on foot. I had it in my mind that I could be on my feet an hour. Wrong. Again, 20 minutes was my limit.
Trouble shooting the obstacles for the batteries are like climbing Mt. Everest again. I don't know how they make life and death decisions on that mountain with so little oxygen going to the brain.
My brain was really low functioning this am and keep changing channels on me. I called the number on the power chair and found out that number was no longer in service.
I called a local battery place and thought I had hit pay dirt. The owner came out and checked the batteries and the battery charger. It is the batteries. They are 4 and a half years old. He said batteries usually last 3 years.
He checked the cost and called me back. It seems reasonable. The only problem is I do not have the funds.
I called MediCal and found out I need to find a company that accepts MediCAl, get the code, call MediCal back with the code and then I will know if MediCAl will pay for it or not.
I also ran out of Biaxin. I called the pharmacy to see if they can mail it to me since the pharmacy is an hour away. Left message.
No return call.
I may be able to use a Medical Transport System but need to be in my power chair in order to ride it to the pharmacy.
I need a break from asking for help. It is getting to me. I miss my independence.
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kam
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It has been over 12 weeks and I still have not received the money for the Change of Life Grant. It would be great to be able to pay back those who loaned me the money to do the two week training. IT is discouraging to check the mail box the past 12 weeks and still find it not there.
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kam
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I made a few more contacts regarding the batteries. I am waiting to hear from a medical supply place to see if MediCAL approved the batteries.
I left a message on my LLMD's phone requesting them to fax a prescription to the medical supply place.
I also asked the medical supply place if they would work with the local battery place. I sure hope so.If not, I will have the obstacle of getting the batteries.
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kam
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After a week without meds and not being able to get to the nearby town to pick them up, I just heard from the pharmacy. They said that they usually do not mail meds but will this time. Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Carol in PA
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posted
Kam, Well, thank goodness the pharmacy will do that for you. I was on the edge of my seat, wondering what would happen.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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posted
Kam, There is a company called Express Scripts and they do meds by mail order. You mail the script to them and they send the meds by mail. They may be an option that keeps you from having to get to the pharmacy to pick up meds. The envelopes are postage paid and there is no shipping cost unless you ask for overnight delivery. The phone # is 866-454-7118. They have decent prices usually. Hope this is of some help. Wizard
Posts: 252 | From USA | Registered: Sep 2003
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kam
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posted
Thanks Wizard. I will give them a call and see if they take my insurance.
I have been going down hill. It seems that it is difficult to know what causes what with this since I have yet to have one variable change at a time.
This time it was the lack of biaxin and the lack of having my power chair to move my body.
The good news is that I have been able to be on my feet twice a day to take Buster out to toilet. We are out for very short times but at least I am out. It seems 20 minutes is my limit still of being on my feet.
I am waking up with the head stuff again too. Hopefully this will go away once I start the Biaxin again.
And the body is so uncomfortable it is tough to do anything but hold down the lounge chair for too many hours a day. I wonder if I can get a job testing lounge chairs.
I also have times when the body goes numb in different areas as I recline in the chair.
I heard from a teacher who will start traveling next week. I look forward to the time I can hit the road.
The only thing that is stopping me now is the lack of funds.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
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posted
Still waiting for meds to get here and for power chair batteries.
Not able to walk Buster this am so I took him next door to a fenced in area that I have been told not to go into because it is Chevron property.
It has a bench I can lay down on. I laid down on it while Buster roamed. Don't like the place because I can't keep an eye on Buster and he gets into too many things there.
But, the brain and limbs were not working well enough to walk him for that short time to toilet this am.
Hopefully, the power chair batteries and meds will be resolved today.
If they have not mailed the meds, a friend said she was heading into the next town to pick up some money from a bank so she would take me in to pick up meds.
I also left message with Medical Supply place to see if they have received doctor's note for batteries and if it looks like MediCAl will be paying for it.
If not, I ran into another guy with a scooter in town and he is getting a new scooter. He said the batteries were just replaced in his scooter but that didn't solve the problem so I could have his batteries if they are the right ones.
He will be getting his new scooter July 6th. First I need to see if his batteries are even the right ones. Then, I need to figure out how I am going to survive without a power chair until then.
Brain is in a fog and body doesn't want to be upright. Time to be a couch potato again. DARN DARN DARN
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kam
Honored Contributor (10K+ posts)
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posted
I was able to get checks recorded in my ledger yesterday. I am still trying to troubleshoot a couple of bills that I thought I had paid but received notice I did not pay them.
I can't find several of my used check books anywhere.
So, I used the banks web site to record the checks onto my ledger. I am missing about 4 checks.
But, so far...I haven't been able to find any record that I did pay those bills although my mind recalls paying them.
This means that the funds will come out of next months food budget leaving me very short for money for food unless I can think of something else.
Stress Stress Stress
It had been a long time since I had recorded my checks. I noticed that in March, I was writing May on my checks. I also noticed that the check book numbers were all screwed up. I use to be able to do a good job of this.
Before lyme, I keep a record of my income and expenses in Quicken and tried to set up a budget every month and stay between the lines.
After lyme, I was doing good if I could just recall how to write a check...or get the limbs and brain to work together to write a check. Many times I needed someone else to write it for me and I would just try to sign it. I still have to do this if I have over done it.
I also need to get the medical receipts together for the apartment manager. If they accept it...my rent will go down. But, don't have what it takes to do this right now.
And it would help if I could get the CALPERS stuff followed up on...but don't have what it would take to do this too.
I have sent an email to the church asking for help. But, haven't heard yet.
I have had 3 people stop by and ask if they could help with anything but they did not have the skills to do this type of work.
I should have least asked them to water the plants out front that are dying.
Perhaps this afternoon my mind and body will be working well enough for me to pick one of the above and work on it.
If I could get my income increased it would relieve some of this stress.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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This sounds so difficult, my heart goes out to you. You helped me when I first came here almost 2 years ago, now it is time to repay the favor. My husband's lyme is only affecting the household from the stand point of things falling down around us. Fortunately, my Lyme ( I am sure from him, STD) doesn't impair me like his neuro does. I do all the banking, bill paying etc. and am fortunate that this is my field of work and can still do it.
The point of this long story is that there is a program here where Elder Services will match a person with a volunteer "money manager" This person will come and assist the impaired to pay bills, reconcile bank statements etc to help and impaired person continue to live independently. Would you be able to check to see if such a program exists in your area? This may be the answer to getting your documentation together. I hope to become one one day when we are well again. Also, I am sure you have tried, but how about legal aid services to get stuff together for CALPERS?
Secondly, if you e-mail me privately with your insurance information, I will gladly call Express scripts to see if they take your insurance. Then I will ask them to contact you by phone or e-mail, whichever you prefer to set up services.
I also have some other med ideas that I may be able to help with.
We are on opposite coasts so it may take a bit of time for me to get the calls made and a response back to you, but I will. Hang in there, happy to help from the other coast! Wizard
[This message has been edited by WIZARD (edited 24 June 2005).]
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Wizard,
Good idea about contacts for helping with the paper work. I did get the number to an organization called Independent Living. I will contact them to see if they have someone in this area that might be able to help me keep on top of the checking account, etc.
I did call the drug company you suggested and it is like the one I had when I had Blue Cross. But, the idea of looking into pharmacies via mail is a good one.
I did get the meds today which is a big relief.
I had a pretty good day today. I was able to walk (not normally) into town today. I went into the local coffee shop and promptly feel asleep for an hour as I laid down in one of the booths. I know the owners and it was not a busy time. HA! I had an appointment in town. Town is about a 20 minute walk. I then had a meeting for about 20 minutes and then walked back home.
In the evening a friend took Buster and I to the fenced in area so he could get his exercise.
I walked back with him. That went well too. Although I had to talk my legs back home. I sang an old song I use to hear many moons ago when my husband was in boot camp. I started out with left, right, left, right...they say in the army the chicken is mighty fine...but one jumped on the table and started marking time...I wish I could recall the rest of the verses. They work well for keeping the legs going and taking our mind off of how the body is feeling.
I also rode into the next town today with another teacher in town. She talked all the way there and all the way back...approximately 2 hours total. It was good conversation, but my mind still has difficulty processing and taking things in.
Later, I tried to go to a meeting for a Bible Study on the Purpose DRiven Life.
My mind was like a pressure cooker. I just couldn't not take anything more in and I wanted to punch the speakers lights out.
I tried just closing my eyes and breathing deeply, but that didn't help either.
I then stepped outside to the quiet and felt like crying. It was such a relief. The quiet was just what I needed. Strange.
I guess I used up my brain listening to the other person talk.
I also lost vision at the meeting as far as looking at the paragraphs in the chapter we were studying.
I think I have had enough. I don't think I will go to anymore meetings. I will just finish the book at home.
Still waiting to see if the batteries for the power chair will be approved by insurance. The medical supply place is still waiting to get a prescription from my lyme doc.
I noticed that he will be in the office next week.
A friend has offered to purchase the batteries for me but I am not sure what to do about that at this time. I will sleep on it tonight.
I just wish I knew for sure that it is worth the wait. It may be that the insurance company will not approve them.
It also may be that the other guys batteries will not work in my power chair.
I would like to know if it is worth the wait.
I contacted Canine Support TEams again about the Change of Life Grant. I tried to call the numbers on the paper work that I had but could not get through on any of them. This is not good.
I sent an email again. I know they received it because I checked the box to notify me when it is picked up.
The people who loaned me the money to go to the two week training or not pressuring me about paying them back. I just don't like the fact that it is taking so long to get the check.
Hopefully I will be able to deal with the CALPERS stuff tomorrow.
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kam
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posted
I was able to walk Buster to the park this am and walk down one path and back. Highly unusual for me to be able to be on my feet that long and be OK. I was almost normal.
I was up and down all night with Buster. He had the ****s.
I have noticed in the past that when I do not get my sleep at night I seem to be able to move my body better in the morning. Strange.
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
I was able to walk Buster to the park this am and walk down one path and back. Highly unusual for me to be able to be on my feet that long and be OK. I was almost normal.
I was up and down all night with Buster. He had the ****s.
I have noticed in the past that when I do not get my sleep at night I seem to be able to move my body better in the morning. Strange.
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
I am doing better. At first there were so many things going on that I couldn't seperate one symptom from another.
Lately, I have been trying to figure out how to get the brain to work well enough to get some of this long over do paper work done.
I started clearing the dining table of all the paper work, etc. on it. I could not finish it. The cogs in the brain were the biggest problem.
So, I decided to take a break and clear my head. I went to the frig to get a slice of lemon to put in my water. Getting the water was not a problem but when I opened the frig I had to stand there for a while before the head cleared enough to recall that I was there to get a slice of lemon for the water. The body also was affected by the brain. The brain had to clear before the arm could move.
Why? How do I fix this. I can hear by lyme doc now...when the lyme clears up this will clear up.
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