kam
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head stuff again this am. took 2 excedrin. hope it helps.
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momindeep
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Will pray for you.
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kam
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thx. so far the exxcedrin nad the cold morning air have helped.
Hope I am not making it worse by using the braint to try and do a few things
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GretaM
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Kam-Are you able to eat a bit of food today?
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Hi Kam - sorry to read about your struggles here - just curious - have you been able to figure anything out about what triggers your head stuff? And the converse - what eases it?
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poppy
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Are you getting ANY lyme treatment? Prayers are nice, but it doesn't sound like you are getting any treatment apart from some supplementary things like acupuncture.
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kam
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i have an appt in Oct to see a LLMD. Hoping health allows me to handle the trip.
A friend is driving me.
When I had a LLMd I asked him about the brain inflamation stuff and he asked me what I thought was causing it.
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kam
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It is a guessing game at this point as to what is causing it.
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kam
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Primary care doc and anotehr couple of docs I saw wante dme to do an MRI of the brain/spine with and without contrast...but health couldnt handle it nor could my poscket book.
I dont' think taht is the answer. I think it would just rule things out.
Had the MRI of the brain when I first came dowwn sick.
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kam
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Able to eat the past two days. STill have pressure/pain in brain but nothing lie it can be at this point.
Hoiping it lets up soon.
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Re the doctor asking you what's causing your head inflammation, um, isn't it Lyme that's doing that?
Have you ever taken any remedy at this point that helps ease your symptoms at all?
It's not your physical head, is it? I had cranial work done that eased head bone pain.
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kam
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Would medicare cover cranial work?? I am sure it would help.
But, I am behind now and making payments on my share of costs for what medicare did not pay..cuts into food budget.
Woke up with a clear head this am. Rare indeed and very nice.
But, it is starting to flare the more I try and do things. So veggie now.
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Medicare would cover cranial work as long as it's done by someone covered for Medicare, like a chiropractor who accepts Medicare and knows how to do it, for example. You could call around to see if there's anyone in your area.
Do you keep any kind of daily diary to see what helps or exacerbates symptoms? First step is to see that pattern, next step is to come up with strategies to help/not hinder.
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kam.. Did you have a positive Western Blot once upon a time?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kam
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Robin...I live in a small town...but I will look into it.
Good to know medicare might ocver it.
It is rare I can use the phone so will see if I can find some business on FB and eamil them.
Tutu..yes..in 2003 after 2 yrs of eeing doc and searching for answers an ID doc knew enugh to test me via igenex. I then saw a lyme specialist.
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kam
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Took 2 excedrin this am arond 6:30 am...taking excedrin in the am is th enorm.
But, the pressure is bldg so asking for prayers so I can get some releif.
Just put the intnse muscle spray on head.
Getting up now to get some ice packs.
Going to see if I can watch a moive and hoping that will ehlp at least take my mind off of things.
I had a moment yesterday when I felt just about normal as I lay in bed. it was a werid feeling.
I knew once I got up that "normal" would go away.
REalizign now, the "noraml feeling was due to not having the inflamation in the brain for a while..it was very nice. ..need mor eof those meoments.
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kam
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OK Sent an email to one place in town. They were not the one voted the best chiro in town.
I'll have to do my research and see what the name of that business was.
But, they had a web site so I was able to send an email.
I do know that they had an office in town but moved it to their residence.
And it is less expensive than the accupuncturist.
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kam
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OK Able to find the chiro/accupun..spp? taht was voted the best thsi eyar in town
they are not open today. no web site but a facebook page. I think I sent a pm in the past but it wasnt' answered. i look into it again.
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kam
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OK Sent them a message via FB
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kam
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Forgot to ask them if they did crainial work. I just asked if they took medicare.
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It wouldn't hurt to ask about both Medicare and cranial work in your text, because what if they don't do it but they know someone else who does?
So I'd suggest asking do you or anyone else you know accept Medicare and do cranial work.
Very important to keep pursuing the possibility of cranial work. I've had it done and it's been powerful.
Again, we never know till we try something whether it's going to work.
So you do better lying down than up, re your head symptoms? Just still trying to understand what makes it better, what worse, because I've long thought symptom relief is so important for us, whatever we can figure out to do.
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kam
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i thuoght i was doing better...got up and able to make the pizze and take rosie out to toilet
but laid back down and head is being weird.
putting ice pack back on but i think i will be ok today
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kam
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robin..tried to read fyour post but tha tpart of the brian is not working..i'll try again later
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GretaM
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Praying for you Kam.
You are doing a good thing taking Rosie out. I am sure she can sense how hard it is for you.
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Good for you for taking care of Rosie through all this. You deserve a hero award, or is it a hera award for females?!
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kam
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Woke without the pressure/pain as intense. But, thinking I will still take a cople of excerin to help me be able to do a few things aroun dhere this am.
Got email from one of the chiro's in town. Sh eseceduled a 5 pm appt for me yesterday. I was able to go.
She does take medicare.
She wants me to come back on Saturday. I was just able to pic up a word here and there.
Saturday she wants to do bio something..which means i need to be able to sit uprigh tfor 4 oor 10 min and it will help undertand more how my body is processing nutrition.
For some time now, I have felt the body is really not doing a good job of that.
AS I lie ther ethe head pressure/pain is building..so weak this am. weaker than usual.
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kam
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Vision is not good this am as far as being on the computer ..typing thsi with eyse closed.
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Good - see if the chiropractor knows anything at all that could help you. And please keep looking for the cranial person, basically to rule it in or out whether it's affecting you.
If you have vision problems, have you tried drinking mangosteen juice? Again, not everything works for everyone, but just to find out.
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kam
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Wondering if it is the meds that cause me to wake up with one part of the head stuff. Beginning to see there is several things gong on with the head stuff.
Wtg for excedrin to kick in. Taking tramadol, gabapetin and temezepan. Gaba and temeezaepan at bedtime along with magnesium.
Going to try and some how lower dosage to see if it helps.
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kam
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Robin. She said she does cranial something..she added words to it which I couldn't take in.
I was taking xango at one time and really liked it.
But, it si not in my budget. I have just enough for food each month and sometimes don't have enough for that. No extra's.
I think it was $100 a month for xango. Just about a week's worth of groceries.
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kam
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Robin...I am bedridden 90% of the time. I do try and get up but can't be on my feet or upright for very long ...est 6 or 10 min.
For some reason I do better when moving in the car. I can drive the 3 miles out to the forest area on the backrorads.
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kam
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Laying on ice pack on back of head. I'd have one on my fore head and top of my hand but not doing well enough to figure out how to get them to stay ther ethis am.
I have an appt in an hour with the chir for the crainial stuff.
Took 2 excedrin at 5:30 am
Praying this goes away soon. AMEN
vision is also an issue. Cosed all the blinds which helps.
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kam
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called and left meesage for doctor that chiro suggested.
She is a neuro muscular skeleton doc and D.O.
1st mesg was to see if she takes medicare.
ASked to email me or text me but usually people just call and since I can't use the phone it goes into the black hole.
So might have caregiver call the office on Tuessday when she comes.
Concerend about having another $200 plus bill to pay for my part that medicare doens't apy and the same things done that have been done in the apst but ddint' really make any difference.
WAsted money. Told neuro this when I saw her and before making the appt. I was ignored...she shoke my hand and billed me adn medicare...my part was $150 on her bill
She is not longer practicing in town but she was part of a corportation so I am still getting the bill plus $30 added to it each time.
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kam
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went to chiro this am. She did this tap , tap tap thing on my back and brain...I think I heard the word disaster
She wants me to come back on Tues.
Wondering what my part of the bill is goign to be. I think she said from $5.00 to $10.00.
But, if she has me coming several times a week this could add up quickly.
She wants me to do some kind of exercise...swimming was mentioned..
i could send antoher email to the PT place. I did not get an answer last time.
But, I was paying out of picket lst time for amonthly feet and was only able to go twice a mnth for 10 min.
I'd rather go for a wlak in the forest if I am able.
I think I will try atht again when able.
Or see about a reclining sit down bike I have sen ..but cost is a factor here too...
righ tnow, the brain/pain is too much to think.
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kam
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11:45 2 more excedrin
got the depends on but hopng I dont need them
also put some of the intense muscle spray stuff on..spraying is not working so just used my hands to put it on..fingers...i think i need mor eof it on but don't want to get up right now..need to lay here and settle a little
then i'll get up and get som e liquid..also dehydrated
and stuff up..
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kam
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hat this...hoping the excedrin gives me a break and ends this
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kam
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excedrin usualy kicks in by now.. Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Hang in there, kam! Been drinking enough fluids today??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kam
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1 more hr to go then I take the sleeping pill and gaba and hopefully get a break from this. Wake up able to do a few things.
Goal is to get out o fthe apartment and set up camp next week to see if it helps with health.
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Get out of the apt? You think you're reacting to it as in chemical sensitive? If so, there's a lot of precedent for sensitive people camping out instead.
Good for you for at least seeing the chiro - that may be a step in the right direction if anything she does helps. If not, well then you've ruled it out.
She probably said cranialsacral - that's the whole system. You just need the cranial check. Ask her for her feedback too, what she's finding. It could be useful info for you.
$5 or $10 is pretty good, as payments go - so just watch it.
Yes, follow up re the doctor the chiro recommended, but do watch finances. It's best to have coverage.
Do you feel better hydrated than dehydrated? Have you noticed that being dehydrated leads to any symptoms?
So did your eyes do better with Xango? That's the pure juice. There are cheaper juice blend options. I like the Mango-Xan one - that will run you around $20/month. And there may be others in any nearby healthfood stores, if you have them? The juice is also anti-inflam in its nature, so just good for us.
Interesting that you said you did better with movement in a car. Wonder what that's about, if anyone knows, re Lyme symptoms?
See if you can come to understand what each interaction does, whether your private actions or with others. If you're going to see an LLMD in October, it would be really helpful to bring that research to them - it will give them more info about you to work with.
Don't know if it would be helpful to have a diary to record your observations or whether you can just remember how you respond to stuff.
The whole point of this discussion is to keep moving forward with investigations, to see what helps. And at your own pace.
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kam
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Woke this am wtihout the over the top pressure/inflalmation/pain in the brain.
Still have the constant flu like cold like symptoms and other things going on.
Took one gabapetin last night and one sleeping pill.
Did not get much sleep last night until I took the 2nd gabapetin about 3 ish ...then nodded off as I listened to wild africa on netflix.
Woke around 4:30 ish or 5 ish.
Vision is still not good as I look at this screen and type.
I'll be back to read what others wrote when able.
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kam
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Robin...not able to take in all that you wrote but you were on my mind and I was hoping to find your post to read.
It was good to see you had posted another one.
Because I was curious as to what this chiro stuff was about. She is doing the full body thing.
She swichted tools this last time so it only makes one tap instead of the tap, tap, tap..I was going to pu in tmy ear plugs ..dang air conditioning unit outside my window just turned on..i have 4 under my window for 4 different apartments ..one seems to run all the time..having trouble typing now so need to get up and close window to shut out noise.
What I meant about moving in the car is I can last a bit longer if the power chair is moving me or the car while slouching or sitting upright..usually slouching
vs just trying to slouch while I am still...
same with standing..can't just stand..need to move about and then both things are very limited on how long I can do this.
Need to fnd a way to communicate via phone so i can make the apaprt with the doc she remommened..
or perhaps drive to office and talk with them in person..depending on what their hours are..
at least if I drive there they might have the hours on the door so I can see if they are open when my health is working well enough to walk in.
i set up what is called purple relay on my computer and on my cell phone but the brain usually is not working well enough to do what is needed to communicate that way also.
i am able to type away this am as i took a couple of excedrin..that always helps.
but doctor's offices are not open at 6:30 am and by the time they open...my brain has gone out to lunch without me.
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kam
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last time i had the bad brain stuff..i went thru the change in the braint oo that makes things appear as if i have been lving daily for years with the brain stuff and don't want to go thru it again.
my mind went thru different ways i know that people have thrown in the towel..but none i would do..as i want to die a peaceful death.
and i would not leave Rosie, service dog like that. i would make sure she is ok first.
so i do need to make an appt with the local doc and see if she might have something that will help during these times
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I talked with a medical professional today. He said dehydration can cause headaches, also lack of minerals.
Water intake should be body weight divided by two, in ounces -ie, if 200 lbs for example, divided by two to 100 ounces. A cup is 8 ounces, so at least around 12 cups of water a day. Could also be as juice.
The first two cups of coffee provide water, then each after that is subtractive. Drinking tea, he said, does not count.
Minerals can be taken in liquid minerals drop form.
If you can swing it, to do as many of these experiments as possible before you see the LLMD on October so you can report on what's helping and what's not, at least as far as you're aware.
And hopefully to find someone in the community who can do the cranial work experiment with you. I experienced it as providing a great deal of relief from whatever head symptoms I was going through.
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kam
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Woke with the head stuff this am. Hoping that it will go away.
Prayers appreciated. It is not as bad as it can get at this poing and praying it does go away asap.
I have a chiro appt tonight so hoping that helps. Last time it did not help that day but the next day it was gone I think.
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Hi - if you can recall what happens during and after each modality you try, great. If not, it might be helpful to keep a small journal.
Can you ask the chiropractor what equipment they're using on you, also whether they're doing any cranial work?
When I had 25 undiagnosed years, I tried all kinds of things, and I always asked what it was. We need to know what helps us and what doesn't, to build up understanding, is my view on it all.
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kam
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1 more hour to go then the sleeping med and gaba and hopefully sleep.
hoping to wake up with this gone.
chiro's office had a note on it saying sorry closed...sorry for any inconveneince (SP)
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kam
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Robin...my brain is out to lunch most of the time without me.
I do know she was using something that made a tap, tap, tap sound.
But, then switched to a tool that just made one sound as I started to put in ear plugs before the session.
Brain flares up with sounds
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kam
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Thanks tutu.
I did sleep thru the night. Woke at 5 am. not sure when i fell asleep.
brain was ok this am. But, took 2 excedrin at 6 am as i was in pain and wanted to be able to do a few things this am.
I know it is probably not good to hav e my head or neck like it is as I layin bed all day.
I prop pilows up and go back and forth from watching TV to playing mindless easy to see games ont he computer just to take my mind off of how i feel daily.
I considered getting one of those table that to put my computer screen on and moves the screen in front of you...but think the best way to go at this point is to get a lap top when i am able ...computer is being werid and is old ...but it is still gettign the job done so thankful for that.
not sue why i was in so much pain this am..more than normal..usually in taht kind of pain when I have been on the trail for 5 min or moving about a bit more than norm but no movement yesterday.
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kam
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Woke at 3 am with the inflamed/pain/brain stuff.
Took a couple of excedrin at 4:15 am.
Prayers this goes away soon.
So far three trips to the toilet due to loose bowels taht seems to go along with this pain in the brain.
Getting depends on now as in the past i haven't been able to get tot the toilet in time
better be safe than sorry
i was hoping to set up camp this am as i use to ffel i felt better outdoors.
body hurt more because of moving about
but the brain stuff was less i tink
haven't been able to be at camp long enough to really know yet.
i was hoping to camp for 4 nights this time.
i recall i had the finalmbed brain lst tuesday. the stuff that cahnges the thinking to how did others take their lives and how can i do a peaceful, painless death
but then i have rosie and i don't want to do that to her. i would need to find homes for rosie and the cat first.
so asking for paryers to help me get thru this and for it to stop so i can ge to the campground and see how i doo.
also prayes that i have what it takes to fill out the form for a local doc and that she does help.
gettign to the primary care do i have now isn't really do able
she is an hour or two awway and i dn't ahve anyone to drive me there.
i see a llmd next month.
a friend from out of state is coming to drive me there ...doc is out of state..prayers my health can handle the tirp and that all goes well.
loosing hope
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kam
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also have ice pack on brain
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kam
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i don't know how long but i am bedridden for th emost part with the computer next to the bed. I paly monopoly and cananast on pogo games and watch tv...brin can't do much and either can body i do drive rosie out to the forest area 3 miels away on the backroad trhru housing developments in town at least once a day
we usuallly are there only 10 min but htose 10 min make a big diffrence.
i also get out of the aprtment to toilet rosie int he power chair but usually don't leave the aprtment grounds...i use to be able to go around the block but not any more..can't be upright in the power chair long enough to go around the block.
dang ..got to make a trip to the bathroom again...trip 4
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kam
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not able to talk to neighbors or be on the phone to even make business calls. that part of the brain broke down when i first came down sick in 2001 and has yet to get fixed.
not able to use relay service as it is too much for the brain
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kam
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Member # 3410
posted
dang..another trip to the bathroom..loosing count..rough way to clear out the system..being in pain
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Sorry you are not feeling well, Kam.
Hope it passes quickly.
Hugs
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I think the awful stuff in the brain is gone...I hope.
But, something is going on.....i have the usual wekaness ..more so than baseline after the pain stuff
but something else is going on..the body being so over tasked movin git not a good idea adn maeks things owrse as well as the chills or coldness.
just yping this out to think via th ekeybaord and keep afloat
had some applesauce...need to get up and get some tea when able and ?
Just waiting for this to pass too. Breating is not back to baseline yet
trips to the bathroom have slowed down
increased flu/cold like symptoms I guess..I have them all the time but to different dregrees
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
10:20 am just trying to stay connected and afloat
weird stuff stil going on...funny because if i were well and going thru semthing like this i would go see a doc or go to the ER...but with lyme and company we have learned that just makes things worse unless the doc is lyme literate
got something to eat and took tramadol and gabag
still would like to atke a shower and see if it helps...very uncomforatble in my own skin right now..but i think it would rock the boat so watg it out.
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
Wondering if it was due to intestines needing cleaning out this time.
I also keep getting the smell of my neighbor and firneds on her patio cigareeete smoke.
I have my bedroom window closed but the screen door is open and the front room window. I know she doesn't alway sleep at night and sits on her patio at night time smoking too..I had my bedroom window open last night and the other windows.
Getting up now to close all the window. I think. I will check temp first. I am hot and sticky in bed but dont' alwasy trust my termperature body guage...i was cold and had the chills earlier.
Could also be the peaches I had yesterday...fruit equals sugar..had frozen peaches..i thought i would be ok if i just had a few
i know i need to get the stuff to help with ..dang can't think of the name now...frluconoze or the diflucan...but getting to the priamry care doc down the hill is too much
hooping to find loacl doc to help
need to be doing wlell enough to fill out the forms first then an appt can be made.
also i have an ppt in oct out of state to see llmd so adding diflucan to the list
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
The inflamed brain stuff is not going away so once again asking for paryers. It seems to be getting worse. Ic epacks are not helping.
Getting up to put the intense msucle spray stuff on tempses etc to see if that helps.
i trid to do what i wanted to do insted of lstening to my body and brain this am .
I forget it makes things worse at the moment.
I recall later..after the fact...i live in the momentn with this most of the time.
It is 11:45 am now.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Praying for relief for you, kam!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
thanks dek
2:30 pm...breath in breath out
I know I went many hours without eating yesterday..ate in am and then again at bedtime...
difficult to know what causes the inflamtion..guessing game...
most likely not just one cause
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
One person I talked with said even just hydration matters re headaches, so to make sure you're drinking enough - and obviously, Lyme could be doing a number too -
Did you ever find anyone to try cranial work with you?
Posts: 13116 | From San Francisco | Registered: May 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I think I am OK now. But, I did notice this am that the pitcher of lemon cucumber drink I try and drink each day is just now needing to be replaced.
The caregiver made it on Monday and today is Wed so I haven't been getting as much of it down as I usually do.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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