kam
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posted
Need prayers again.
Tried excedrin, ice packs, putting feet in hot water, peppermint on temples, etc.
Prayers to know what causes this and that it will go away.
Thanks
Hate this
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Jane2904
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Sorry Kam that you are feeling so badly.
Do you think it could be the full moon this time?
Hope it goes away quickly.
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GretaM
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posted
Praying for some relief for you Kam.
The brain pain and inflame is super tough on one's will. I am praying it gets better soon!
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susank
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posted
My head hurts.
Researching - my head mess could be from Doxycycline.
Are you taking Doxy? Ever taken Doxy?
It's not as "innocent" as I had thought.
Headaches - mental stuff etc.
Reading patients reports.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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kam
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Just took 2 more excedrin.
5:15 here..3 more hours and then I can take the stuff to help me sleep.
praying I sleep and wake up without it in the am
Gut is blaoting too...can't recall but seems gut and brain inflaamtion usually happen at same time.
Vision is off so typing thsi with eyes closed.
Thanks for ht prayers...thought it was going away but flared back up
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momindeep
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Prayers for you Kam.
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kam
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posted
one more hour I think. Breath in. Breath out.
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Dekrator48
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Praying for you, kam.
Hope you are feeling better this morning.
-------------------- 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
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I think it has broke. Wishing and hoping and praying. 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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4:45 am Woke with the head suttf. Just took 2 excedrin. Prayers it goes away.
Ove rheated too but too out of it righ tnow to do anything about it. Bouncing off of walls.
When able, need to get up and close windows and turn on air contiditiong.
Hate this.
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LisaK
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praying!
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kam
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I think I am OK. Laying low...need to get back up and put my ice on the brain and the spray and the ppermint when I think I can move without making things worse.
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kam
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posted
it hasn't broke yet. Might take a couple more excedrin.
One of those days when a peaceful death sounds more do able than fighting this.
But, I knwo from past experience that once this lifts I will get the fight back
Thankfu for Rosie.
Looking forward to when I see the LLMD and can ask him or her about this.
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momindeep
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Thinking about you and asking the Lord to help you.
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kam
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Doing better. Got out of the house in the car.....storm clouds came in and cooled thing sdown...
a few rain drops..
but brain inflamation went down...nice...hope it is ok the rest of the night now that I am back in the house..
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kam
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need prayers again. Wondering if supplements can trigger this??
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kam
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doing b etter. i think it has lifted.
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kam
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Woke at 3 am with the head stuff although it was rough day the day before but not as bad as 3 am
Still struggling...wearing the depends but so far able to make it to the bathroom thankfully
but hard on the system..not tossing my cooies yet but close
Need prayers again...thanks
Using ice packs
excedrin
intense muscle spray
dark room..trying to watch a movie but that isn't working too well..making brain hurt more
typing with eyse closed
medical examer is coming at 1 ish today for the eval to get long term care aproved
i have been thru this beofre and have been denyed several times
superviors of caregivers keeps putting me in to be evaluated
it would be a good thing to get aprpvoed but the process makes my health wworse.
told person i can' do a verbl interview...she said that is the way it has to be
i will protect my health and put my earp protection muffs on when she si here
gong to see if maybe it can be rscheudeld as i am just too sick and don't want to get to the point where i think being dead is a good idea
the intervie will make me worse.
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GretaM
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Prayinf for you Kam.
Hope interview goes good- maybe them seeing you vomiting will help convince them.
Praying for good interview also.
XOXO
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kam
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almost 11 am. just checking in. i thought i was doing better.
i thought i might be able to do something in the kitchen
but first had to go to the bathroom.
that did me in..brain flare dup again and i am back own...need to get back up and get ice for the brain in a bit.
the past two days i am reminded that if i were a dog they woudl have put me ut of my sufereing by now
i know that i will have the will to fight the good fight once this breaks
i just need to wait this out
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kam
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Got an email from the supervisors of the caregiver organization. She said she spoke to the person with long term care and I scored a 20 last time.
I need a 60 to get in the system so they will not be coming out today. Finally some answers.
I do think I need the lyme doc to help me get that medical need up.
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kam
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It is a relief to know I don't ahve to deal with them today.
But, brain inflamation still needs to come down.
Getting up to get some more ice now
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randibear
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posted
there is a product called migrainerelief. I may have misspelled it but it worked wonders for me.
jus checked. its called migrelief. I believe it's on Amazon
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kam
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thx i'll give it a try
i jus ttoook a couple more excedrin and sprayied my head with atht intense muscle spray. Need to get up and see about more ice .
2:20 pm. 6 mor ehours until I take the sleepin gmed combo and hopefully get some relief and wake up with out this pressure stuff.
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kam
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For some reason I thought I had put the this stuff behind me.
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kam
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3:20 pm. Difficult to know if the excedrin helpe dor not. I am not getting any relief but at laeast it is not getting worse I hope.
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Jane2904
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Hope this passes soon for you Kam. So sorry you are in pain.
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kam
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Thx Jane
one more hour to go
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kam
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Woke in th emiddle of the night without the inflamation in my brain.
But, it started to increase
Not as bad as yesterday
Just took 2 excedrin and hoping it will go away.
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GretaM
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Kam-is it very hot where you are?
Does cold towels on your neck help?
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kam
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Yes that helps.
One more hour to go then I will take the sleeping pill and gabapetin.
Hoping they help me fall asleep and I wake up without this.
Took 2 more excedrin at 5:30 pm but I don't think it helped much.
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kam
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thanks fro the preayers. it lifted last around 8 pm after i had taken the sleeping med and gabapetin
i considered getting up to see if i might be able to take a shower or do some dishes but decided not to rock the ooat.
i am doing ok this am
hoping it doesn't start back up again
again, considering taking a shower and or doing a few dishes
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kam
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Need prayers again. The brain inflamation has yet to let up this am.
Thx 11:30 am now.
Laing on ice pack
When able, I will get up and use the intense muscle spray..the spray part of it broke so need to come up with plan b for getting it on the brain or skull
MIght need to takae a couple more excedrin too..but hope not.
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LisaK
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prayers for you!
I hate head stuff!!!!!
can you take some red wine?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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kam
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thx lisa. i have the gut thing too..next time i see a yme sepcailist i am going to ask them for suggestions on the bloated gut as if i were pregannat and the inflamed brain combo...
it seems to go hand and hand although i get the bloated gut thing by itself too
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kam
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i think the sugar in the wine would make things worse for me...i haven't had any wine, alchol in years and years
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momindeep
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Hope you are feeling better.
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kam
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thx momindeep...doing better. i was in and out of sleep for ? hours.
I think if I just continue to lay low I should be fine now until bedtime.
Tomorrow is new day
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posted
The bloating is usually candida/yeast, kam. And it does indeed affect the brain.
Hope it lets up very soon.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kam
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posted
NO blaotin gthis am but I do have the inflamed brain thing. Laying on ice now.
Took 2 excedrin at 5 am.
8 am now.
Praying ti lets up soon.
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kam
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10:45 am. I hve been in and out of conscouness.
Several trips to the komad...lot of BMs'
not sure why but it seems to go with the head stuff.
Typing with eyes closed.
Just put some intense muscle spray on.
Still using ice pack
Nt sure what to do next to help...mabye the feet in the hot water thing next but any movement at this point makes me feel worse. And I reallly am ot stron geough righ tnow to try and sit on the handicap bench in the shower to pput my feet in a plastic tub
I will lay here a bit and then maybe try..bowels are stil acting up..I still have dpeends on but so far have't had to use them thankfully.
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kam
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Took a couple of exceedrin.
I think soakeed feet for 10 min...nt sure but couldn't sit upright for any longer
Forgot to put ic e pack on hed while soaking feet in hot water
At first water was too hot...then put feet in again and couldn't feel anything..excedrin must have kicked in??
Back down now...going to see if I can handle watching a slow moving mvoe.
11:33 am. Need to get up and get another ice pack but fo rnow..moving is not a good idea
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kam
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had another BM...i hve lost count on how many I have had this am..it always amazes me how full of it I am. 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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I think it is pain that cuases me to keep havin gto go to the bathroom. I
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posted
Kam .. any chance you can keep a food diary?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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momindeep
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Asking the Lord to help you.
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kam
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I was trying to figure out how to do that as I usually can't go bck and red what i wrote.
Maybe on here and others might be able to see a pattern.
I just had half of a almond butter and strawberry (fruit only) gf sandwhich...still trying to take a few more bites.
So weak
And took the tramadol and gabapetin
A couple of things I wonder are about the gf pancakes with pure maple syrup
and the gf chicken tenders
I'll start a food diary soon on here
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kam
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Food is tricky as I can eat some tings and be fine and maybe have a reaction aontoher time.
I also know that not getting food in me can cause problems too with brain pain
So, it will help just ot keep the food diary to make sure I am eating. I know I odn't eat enough each day but do the best I can
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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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posted
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
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GretaM
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posted
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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posted
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.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
That's a lot of money. Maybe it will help calm things down.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
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.
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
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
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
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.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
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
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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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: 96222 | From Texas | Registered: Feb 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
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.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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