kam
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Able to take Rosie out to toilet...thankfully it was a very short outing...
put antoher ice pack on brain
had the dry cough and felt like tossing my cooies whiel out and brain presure got worse
put on peltor ear muffs to keep noise level down but was still effected by cars and air conditong unt
smell of neighbors cigarett smoke was worse too
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kam
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can't think righ tnow what i ate...
i am wonderin ghow much i drank yesterday
i think hydration is alo aprt of this
since i have started the lemon cuke drink the pain brain is not as bad as it could get
tried drinking one of the pitchers this am and not sure if there is lemon or not in the drink..tastes more like just cucmber adrink...but i ll try again alter
nto sure what i ate yesterday...brain cant handle tha tprocess right now
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kam
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got rosie feed for this afternooon
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kam
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sent email to local acupuncturist but told her i needed to write a check and hav eher not cash it until next month.
i haven't heard back but i knwo she doesn't read her emails very frequently..she is one that needs to be contacted via the phone
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kam
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got up to put some more intense muscle spray on the temples, brain etc but forgot
dished up some applesauce but forgot it n the kitcnen
put some gr giant mixed veggies in microwave
need to just lay still for awhile and then i'l get up and go to kitchen
3:45 pm
4 more hours before I can take sleeping meds and hopefully get some relief form this
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kam
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i know i didn't do a good jovb of eating yesterday or drinking due to health
i recall having some gr giant creamed spinach for dinner
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kam
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ok took a tramadol and gaba
had a few bites of the gr giant mixed veggies
trying to decide whether ot not to take a couple more excedrin or not
pressure is bldg again
laing on ice pack but not sure if it is helping or making thins worse
put the infalmed ..no intense muscle spray stuff on
maybe I wil try the hot water in the plastic bin and soakign my feet in there next...need to lay still first
lord, lease take this away from me amen
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steve1906
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The only things that ever help me is---(very dark room)---(lots of ice)---and---(Any drinks with lots of ice.
Feel better Kam!
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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GretaM
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Kam-the brain pain makes me have to go to the bathroom more also.
It is like my body is trying to empty itself when I get the bad brain pain.
Vomiting, frequent BMs, no appetite.
I'm sorry you're going through this.
Steve is right, icy water helps me also. So do the gel packs tied to my head.
I take lots of meds to survive it but can't each much food either with brain pain.
Cigareete smoke, even others burps, I can smell . Also hair smell and even leather smell makes me gag.
Praying for you Kam.
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kam
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thanks greta
Took 2 more excedrin at 5:30 pm. Drove Rosie a shosrt distance up a hill to let her do her business
it was nice there...cool breeze...i didn't realize how hot and stuffy the house was.
opened windows
need to put ice pack back in freezer and need to put ice in other pack when able
hoping to put ice on head and feet in hot water..not sure if it helps or not but worth a try
just logging in to try and remain sane.
i'll have to read steve's post in a bit
2 more hours than I can take the sleeping pill and gaba and hopefully sleep and get some relief from all of this.
for now..not movingI did drink a littel bit more of th elemon cuke drin..pitcher is just about empty
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kam
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Got a break during the night. The sleeping pill and gaba helped me to sleep.
Typing with eyes closed.
Took 2 excedrin this am. 5:45 am
Took Rosie out to toilet via power chair...not doing well and Rosie kept wanting to stop and eat the bgrss.
NOt even sure if she went peee. I know she went poop. Need to go back and pick it up when able.
Tried to talk to a neighbor who was also out toileting her dog in a power chair...but it was too much.
Looked up how to kill yourself with sleeping pills yestrday but couldn't read what it said.
I wouldn't do it with Rosie in the house. NOt sure I have what it takes to do it anyway.
I have always told myself to wait unti this pain breaks and then see about it.
But,after it breaks I have the fight the good fight back.
Still not at thta tpoint yet today.
Trying to get some Kind GF cereal down me this am. Had one spoon full so far.
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kam
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Learned the maratron (SP) almond butter I ate yesterday is one on the recall list.
I have been eating it all month adn the month before that. Ugh.
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kam
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Needd to put more ice in ice packs..but not doing well enough righ tnow to do it. Drove Rosie out to do her busienss but not doing well enough to had her get right back in the car before she could do her business.
She should be OK...
She hasn't even ate her morning breakfast yet.
Need to maek the pitcher of the lmeon cuke drink but not doing well enough to do that yet eiter.
So, Laying here..hoping I can get up in a bit and do both.
Brain is flaring up or pressure is getting worse
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kam
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Greta..it doesont' make sense bu *** helps to know you go thru this too.
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kam
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steve thanks...sorry ouu go thru this too
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kam
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I also need to get up and pull the shades or blinds when able in my bedroom and the rest of the parmtne
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kam
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Able to make a pitcher of the lemon drink to help with hydration...body got the chills durng trying to amek it and i am still very cold now even tohugh I have a down comfoter on and ti si not cold out.
able to close the blinds in my bedroom.
resting now, then hing to get up and get something to eat...and take tramadol and gabapetin
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kam
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Got an email from the accunpuncturist. She is coming today at 11 am in our community room.
Very nice of her to do this. Tehre goes a weeks worth of groceries for next month though.
But, righ tnow, it seems worth it if it helps.
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posted
That's a lot of money. Maybe it will help calm things down.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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kam
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It is $70 tutu
able to eat but if my brain were a balloon it started blowing up agan from getting up to fix something and from eating..hoping it goes back down now as I lay here.
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kam
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slept most of the afternoon after the accupuncturiest left
i still feel like i coudl sleep some more
i still have pressure/pain in the brain but not as bad as yeseterday
mostly i was able to feel my limbs after th accupunturiest left and while seh was here..whole body was in pain...noticed the limbs started to feel almost normal..nice
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momindeep
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Been thinking and praying for you. I use acupuncture and have for years...I think the benefits of a good practitioner are worth every cent.
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GretaM
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Hi Kam,
I hope you are able to sleep soundly tonight.
Acupuncture helped me with insomnia, maybe it will help to distract your brain from the pain so you can sleep.
I know exactly what you mean Kam. When the head pain debilitates me, I beg for mercy via death.
Literally lay there and pray for death, for some relief from the pain. The pain makes me paranoid also, and I feel like all of us with lyme are just big science experiments under observation.
But when the pain subsides, I go back to wanting to beat lyme and make a difference with the denialists.
It is weird what pain with do to thought processes.
I wouldn't wish the kind of brain pain with the nausea and food-choking, and bladder control loss on my worst enemy but it does reassure me that other have also experienced it this bad, and helps to keep me calm.
I am sorry you are in a bad stretch Kam.
I think there is something about this time of year. Last year around this time was bad also for the encephalitis.
Do you feel like the brain swelling is a shadow you cannot shake off? Even on the good days, there is a 'something not quite right' with the sensation in my head...
Anyways, hope you are able to stay hydrated and get some food in you.
Sending prayers and hugs and also daydreaming about our Shade Tree we rest under when the going gets tough.
XOXO Greta
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posted
Sounds like the acupuncture helped the pain and relaxed you some! YEA! Hope it at least lasts through the night!!
See you tomorrow for a new day. Let's hope it's a good one!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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kam
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I had about an hour lsat night where the brain was also just about normal bu then it started up again..but just the usual pressure I always have going on.
Tying this with eyes closed.
Greeta, it was last year at this time that I also had a really bad time of it with the brain inflamation. too.
I only know this as a friend from CA came and we went to some cabins about 30 min from herre.
She sent me an email and let me know it was this time last year that we did that.
I had been going thru several days of the brain stuff and It broke right before she came.
I was the closest to throwing in the towel than I had ever been with this. I was too sick while going thru it to do anything unless I had a gun.
So was waiting until it was over and then had planned on figuring out how to end things so i would never have to go thru it again.
Even while at the cabins aing on the cot on the doors I keep wondering if it was worth it..I was still remembering how it was with the pain. .and life with lyme.
But, here I am a year later.
Pressure in the brain again thisa m. HOping to get up and get dressed and drive up one of the hills to let Rosie do her business.
Lately while I have been there, I wished I had a better way to transport my power chair so I could cruise around on the undevleoped housing track streets with Rosie.
Or that my health would get strong enough to load the power chair on the lift on the back of the car, unload it, load it and unload it again.
I usually can only cruise around for 10 min in the small upright chair.
I think I would be able to last longer in the large big boy power chair but tha tone will not fit on the lift.
Bottom line is I am wondering once again if I could get out of the aprtment more if I the brain stuff would improve.
Time to go camping..and see.
Ringing in ears was louder than normal yesterday and again today.
That seems to be a bit better when I am out of doors too.
So thankful for the accunpunturist actaully coming to the apartment complex.
We were planning on using the community room but there was too much traffic coming in and out so she came to my apartment and I laid in bed.
The back stuff was OK.
But, I was uncomfortable whe it came to havin to lay on my stomach for treatment.
She wantee some feed back from what I could understand but I ws too out of it to give her any feedback.
She said a few sentenes to me but I could only take in a word here and there.
I did understand she wanted me to eamil her so I wil do that and let her know I was only able to take in a word here and there when she was talking.
So much of the time I can't reall explain what is going on. My bdy and brain just shut down.
I dint' even know that my whole body had been effect by the brain stuff until she started with the accupuncture and I started to be able to feel my limibs again.
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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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posted
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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posted
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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posted
kam.. Did you have a positive Western Blot once upon a time?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | 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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