kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I think/hope I am finally coming out of that hole I was in...black hole...Hawkins could have gotten lost in there.
But, still to low functioning to do much but lie here.
So, how about a thread on checking in....when you got dx, how bad you were, how well you are doing now...
...Or....
How is your day going now. What's happening in your neck of the woods.....
.....Or...what is your average day like?
...how long have you been visiting lymenet??
...or....????
I'll start...
oops..be back later...got to give my brain a rest..wore myself out just starting this thread
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Kam -- I just want you to know that I think you are the most amazing person that I have never met. Sorry that you are struggling right now, but I think that things will get better for you soon.
No matter how you are feeling . . . good or bad . . . and no matter how others are feeling . . . good or bad . . . you are there for other people here on Lymenet.
Your concern for others is the sign of an angel here on earth.
Thanks for being the wonderful angel that you are.
So "others" . . . keep in touch here on Lymenet. Kam cares about you. And we care about her.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Thanks for giving me permission and a forum to vent today...
I am sooooooooooooo sick today and I hate sympathy but at the same time I want to be able to get it out.
yesterday I had more energy than most days and baked cookies , two banana breads, squash souffle...today slept all day, can't move, can't lift head off pillow...
I have been herxing since starting Ceftin and Biaxin on Dec 27; maybe two ok days since then when I could actually get up.
Today slept all day, in so much pain, wrists, fingers, lower back, ankles, neck, shoulders, eyes burning
Exhausted, cranky, can't even move head or lift it up...im on laptop in bed
CAn't keep eyes open, feel liek crying but don't have the energy
My feet sre burning and stinging on the bottoms
I am drenched in sweat and so is the bed but I'm too sick to change sheets
can't move can't move can't move
everything hurts
need a bath and massage but I'm too tired ot form the words
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I feel like one of those paralyzed people who can only comunicate by peckng out a few words on teh keyboard with the only working body part; a couple fingers
anyone ever feel so sick you just can't talk you don't have the energy to form the words
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
quote:Originally posted by Tracy9: anyone ever feel so sick you just can't talk you don't have the energy to form the words
yes, I have unfortunately more times in my life than I wish to count.
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
"So, how about a thread on checking in....when you got dx, how bad you were, how well you are doing now..."
got sick 1987
diagnosed 2000 (by then I was disabled)
Now - I am still disabled.I am better than my worst but still feel horrible all day every day.
I never get past doing the things that need to be done. And they take everything and then some from me (and I still never get them all done)
I forget when the last time was I got to do something I really WANTED to do ... something just because it makes me happy. I have NOTHING left for that....
except HOPE that someday I will wake up in a body that cooperates. Hope that someday doing stupid little stuff necessary to survive won't take ALL I have.
After over 7 years trying to get better, I still have hope that someday "it" will get better... even through the loss of everything I wanted my life to be and the wear and tear this disease inflicts.
Hopefully I will keep hoping... I just keep thinking someday these huge dark clouds will blow on by... and reveal the starry sky I used to live under... I try to have faith that all the stars in the universe haven't burnt out and abandoned me.
Hope you find your way all the way out of your black hole quickly Kam
I started visiting lymenet in 2001 I think. Some periods I was too sick to walk or anything so I wasnt on during that time. Also I think that I couldnt for a couple other period of times cuz my moms computer had issues.
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Hi Kam.
I am glad you are coming out of that "black hole".
Don't know when I was infected.
Diagnosed in Oct. of 2006.
Under care of a LLMD since Nov. 2006.
Better now (overall) than one year ago for sure.
Had a strange day. Not too much pain but feeling shakey
All day. Had to gather up all kinds of dead tree branches to burn.
Pulsing flagyl over the weekend and I can't talk.
I hate that. I know what I want to say, but just can't "find" the words.
My husband asked me where something was. I knew.
Stood there with my mouth open trying to figure out the words to say where this thing was.
Finally just gave up and went to retrieve the darn thing!
I have struggled all weekend with this.
Really hard for me as I am a Speech Pathologist.
Still hoping to maybe get back to work at least part time this coming fall.
However, not ethical when you can't find the words to speak.
My husband and I are to meet with the builders today.
Hope to be able to effectively communicate.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
It is so reassuring to read your posts and although we are isolated, we are not alone.
Azure Wish...I keep hoping for a time when I am doing well enough I can drive out of the city lights and look at the stars.
It is something I miss since coming down with this.
I think we might be close to the same as far as how long we have been battling this.
So, it is good to know.
Geneal, I don't know why but you always put a smile on my face. What a trooper you are.
Lou...thank you.
Tracy...those days after being able to do more than usual are always the toughest for me too.
And a mystery as to how to avoid them.
I had them even when I was not on abx or had a dx.
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
Came down with cold flu in Oct. 2001 but different than anything I had ever had before..just didn't know what to call it.
Felt like I needed a wheel chair to get to work.
REnted a scooter and learned that didnt' work either..could not sit upright for the most part.
Still wasn't able to return to work although I tried 3 different times. Collasped the last time. They were not able to get a pulse from me or blood pressure.
Was told not to come back until I could promise I would not scare them like that again.
Still not able to make that promise 7 years later..i think...2001 to 2008
Finally learned that a reclining power chair is what I needed instead of scooter.
REceived a reclining power chair a few months ago. Very nice.
Received lyme dx in 2003 and started treatment.
Gradually improving but it is slow going....very slow going.
had daily help when I lived in CA. MOved to AZ and county would only allow 4 hours a month.
I am at the point that I want to be able to do things myself and no longer want help..but still need it.
I like being able to find things when I need them and know where I put them vs someone else putting things away and me trying to find it.
I especially like having my clothes and towels dry before they are put away. Sheesh. Homemaking 101.
Able to do a little dishwashing this am. HOpe to be able to do more later.
At least able to prepare meals for myself if I keep them simple.
Purchased some premade meats at butcher Friday which has gotten me through the weekend.
I just need to put them in the oven and heat them up for 30 min.
Also helps to heat the house which is a plus.
I eat in my recliner on a tray as I recline. EAting at a table or upright is usually not an option.
Had a burst of energy last month and pulled boxes out of storage. Need to get them back.
No walking room or power chair room in house now.
Waiting for another burst of energy so I can get them back. Problem is bursts of energy only come about once every 2 or 3 years like that.
Have appointment today with new counselor. I hope she becomes a postive, encouraging part of the team.
I think I will be able to drive to her office. But, will need to lie on floor during intake.
Had scheduled senior van to pick me up so I could take power chair that reclines, but they are not able to.
Could reschedule but it has been several months to get to this point so not sure about rescheduling and not sure I will have what it takes for intake.
Thought I would just try. If it doesn't work, I will then reschedule.
Have tried several times to meet with others who also have health problems in the area but meetings are few and far between due to health.
Had a friend in CA who I miss and hope to find another like her in my new town.
I have learned I can not be around complainers, negative people, or those who try to get you on their page....
especially when I am having enough trouble staying on my own page.
I'd just like someone who walks along side of me...doesn't lead...does't push..doesn't bump into to me or get in my face.
Wasn't even able to get out while living in CA. Didn't have a clue who my neighbors were.
I am able to say hi to a few friendly faces here if I keep the conversations very short while I am heading out the door to toilet Rosie while in my power chair.
Discovered I have movies on the cable I get lately.
I thought I had channels 2 through 99, but one day kept pushing the forward button and noticed there were more channels.
Have found Hallmark usually has some good movies when I am able to watch them and some of the other channels.
I know if I learned to use the remote control I would be able to see what is playing but my brain is not there yet. Still keeping it simple.
WE have an 8am whisle, a noon whisle and a 5 pm whisle left over from the lumber mill days.
The noon whisle just went off. The whisle's bring me comfort is some strange way.
Well, my brain is going and my body is starting to shake inside. Still very weak and low functioning as I type this on my back in bed.
Wating for telephone consult with lyme doc the end of the month to see what's next treatment wise.
Trying to decide what to do about needing help with household chores. I have two people who were helping but not sure I want their help again.
Trying to decide what to do about seeing primary doc..only have a couple more days of lunesta.
Insurance will not provide it so doc gave me samples. Nice to be able to sleep.
Also insurance denied water therapy. I would like to get back to doing that again and wanted to see what if anything I could do to get it back.
Also need to see where I am in the budget for food. I need to be careful or I will find myself without the funds for food the last two weeks of each month.
Which is not good.
I have gone to local food banks. So far it has not been worth it since i am on a gluten free/sugar free food intake.
Still debating on whether to keep trying or not...canned goods I received last time were dated from before I got sick. Not good.
Threw them out to be on safe side.
Not stuff I eat anyway and no nutritional value.
Told myself last time I would try one more time before making a decision about continuing to go or not.
Keep thinking I will find something I can do to bring in funds.
Can't seem to keep my mind focused so will stop now.
Big part of my day is either on my back next to computer or in recliner watching a movie.
Need lots of quiet so dont' really do that much TV.
Movement on screen also is a problem wth TV
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
Came down with cold flu in Oct. 2001 but different than anything I had ever had before..just didn't know what to call it.
Felt like I needed a wheel chair to get to work.
REnted a scooter and learned that didnt' work either..could not sit upright for the most part.
Still wasn't able to return to work although I tried 3 different times. Collasped the last time. They were not able to get a pulse from me or blood pressure.
Was told not to come back until I could promise I would not scare them like that again.
Still not able to make that promise 7 years later..i think...2001 to 2008
Finally learned that a reclining power chair is what I needed instead of scooter.
REceived a reclining power chair a few months ago. Very nice.
Received lyme dx in 2003 and started treatment.
Gradually improving but it is slow going....very slow going.
had daily help when I lived in CA. MOved to AZ and county would only allow 4 hours a month.
I am at the point that I want to be able to do things myself and no longer want help..but still need it.
I like being able to find things when I need them and know where I put them vs someone else putting things away and me trying to find it.
I especially like having my clothes and towels dry before they are put away. Sheesh. Homemaking 101.
Able to do a little dishwashing this am. HOpe to be able to do more later.
At least able to prepare meals for myself if I keep them simple.
Purchased some premade meats at butcher Friday which has gotten me through the weekend.
I just need to put them in the oven and heat them up for 30 min.
Also helps to heat the house which is a plus.
I eat in my recliner on a tray as I recline. EAting at a table or upright is usually not an option.
Had a burst of energy last month and pulled boxes out of storage. Need to get them back.
No walking room or power chair room in house now.
Waiting for another burst of energy so I can get them back. Problem is bursts of energy only come about once every 2 or 3 years like that.
Have appointment today with new counselor. I hope she becomes a postive, encouraging part of the team.
I think I will be able to drive to her office. But, will need to lie on floor during intake.
Had scheduled senior van to pick me up so I could take power chair that reclines, but they are not able to.
Could reschedule but it has been several months to get to this point so not sure about rescheduling and not sure I will have what it takes for intake.
Thought I would just try. If it doesn't work, I will then reschedule.
Have tried several times to meet with others who also have health problems in the area but meetings are few and far between due to health.
Had a friend in CA who I miss and hope to find another like her in my new town.
I have learned I can not be around complainers, negative people, or those who try to get you on their page....
especially when I am having enough trouble staying on my own page.
I'd just like someone who walks along side of me...doesn't lead...does't push..doesn't bump into to me or get in my face.
Wasn't even able to get out while living in CA. Didn't have a clue who my neighbors were.
I am able to say hi to a few friendly faces here if I keep the conversations very short while I am heading out the door to toilet Rosie while in my power chair.
Discovered I have movies on the cable I get lately.
I thought I had channels 2 through 99, but one day kept pushing the forward button and noticed there were more channels.
Have found Hallmark usually has some good movies when I am able to watch them and some of the other channels.
I know if I learned to use the remote control I would be able to see what is playing but my brain is not there yet. Still keeping it simple.
WE have an 8am whisle, a noon whisle and a 5 pm whisle left over from the lumber mill days.
The noon whisle just went off. The whisle's bring me comfort is some strange way.
Well, my brain is going and my body is starting to shake inside. Still very weak and low functioning as I type this on my back in bed.
Wating for telephone consult with lyme doc the end of the month to see what's next treatment wise.
Trying to decide what to do about needing help with household chores. I have two people who were helping but not sure I want their help again.
Trying to decide what to do about seeing primary doc..only have a couple more days of lunesta.
Insurance will not provide it so doc gave me samples. Nice to be able to sleep.
Also insurance denied water therapy. I would like to get back to doing that again and wanted to see what if anything I could do to get it back.
Also need to see where I am in the budget for food. I need to be careful or I will find myself without the funds for food the last two weeks of each month.
Which is not good.
I have gone to local food banks. So far it has not been worth it since i am on a gluten free/sugar free food intake.
Still debating on whether to keep trying or not...canned goods I received last time were dated from before I got sick. Not good.
Threw them out to be on safe side.
Not stuff I eat anyway and no nutritional value.
Told myself last time I would try one more time before making a decision about continuing to go or not.
Keep thinking I will find something I can do to bring in funds.
Can't seem to keep my mind focused so will stop now.
Big part of my day is either on my back next to computer or in recliner watching a movie.
Need lots of quiet so dont' really do that much TV.
Movement on screen also is a problem wth TV
Was doing better while on ketek but am going down hill now that i am off of it.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
I've been really struggling with my hip pain, but I had a WONDERFUL day yesterday. My husband and I put my daughter in the backpack and went hiking at Raven Rock State Park. I haven't been able to hike, really hike, in years! We went about 4 miles.
I have been following the diet again (thanks to all who helped to get me back on track), and definitely notice the difference. Now if I can just get the joints on track....
I could really go for a few more hikes. I finally felt alive again.
Posts: 49 | From Holly Springs, NC | Registered: May 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
fetz, that is very good news. If you don't mind, would you post your hiking trek on this weeks Hiker's/Walker's club thread?
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Dear kam, you are a brave soul.
Do you have Meals on Wheels in your area? They deliver to elderly/disabled. I received it for three months after meningitis last September.
The food was pretty nutritious and you could request certain modifications. It helped a lot when I was in bed all the time.
I got diagnosed in 2003 just three days after a tick bite. I had a bull's-eye rash. I got one month of amoxicillin and that was IT.
Two months later I was paralyzed from the neck down, felt like I had the worst flu ever, and was in bed for weeks. I was hospitalized several times and kept being told my illness had nothing to do with my tick bite and rash - I was "depressed" and had "conversion disorder".
I didn't have access to the internet and had no clue why I was not being treated for obvious tick-borne disease. At my worst I couldn't read, watch TV, or move, and I had vertigo and drenching sweats.
Thanks to the persistence of my husband, today I am fairly active though by no means well. I have a lot of neurological problems that need to be solved. I think I have my co-infections defeated at last!
That's my story in a nutshell, kam. God bless you. - Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
julie, thanks for telling your story in a nutshell.
I think it helps to know we are not alone and it helps us to remember what it was once like and that we are making progress.
In the town I lived in CA, they did not have meals on wheels.
When i moved to AZ, I did have meals on wheels once a day and was very thankful for it.
I am able to fix my own meals now if I keep it simple.
Meals on wheels here is full of breads, white rice, potatoes, sugar, deserts, etc, pizza and many other things I can not eat.
I actually fell worse and finally figured out that was what was causing the head stuff and the poke in the eye thing...I think..everytime I think I have it figured out I learn I don't and it sticks its ugly head 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
Tracy,
Wondering how you are doing.
It looks like I am coming out of whatever it was that zapped me.
Looked back and it was 10 or 12 days ago when I was able to fold the towels and put the laudry away.
Don't know if I over did it and that is why I was zapped or if it was the combo of no more ketek, no help, the cold, and of course lyme.
STill struggling just to type this out. Typing it with eyes closed.
But, was able to pick up some more ready made meats from butcher...I think about 5 days worth or 5 meals.
Finally able to order something that is within my budget for my grandsons for Christmas.
Able to get to bank to get $6.00 to put in grandson's birthday card for his 6th birthday. It was yesterday.
And folded up Christmas bags and tissues and put them in Christmas bin.
All of this had to be done what a fellow teacher called piece work..
I did a little, rested a lot and then did a little more.
I plan on doing some more tonight..dishes I hope.
But, I also do not want to over do it to the point that I am down for several days again.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
kam, You are one remarkable lady. I'm always amazed at how much you accomplish with all you're dealing with. You, and others who tell similar experiences, are an inspiration to the rest of us.
Haven't been on LymeNet much the last week.
Caught the "sore throat/cough/congestion" thing that's going around. Ran some fever a couple days and had laryngitis one day.
Feeling much better so now I'm trying to catch up - especially packing up Christmas decorations and getting the house straight.
....or at least put the clutter back where it was before Christmas so I'll have an idea where to start looking for things. Can't find a thing right now.
My Lyme story goes back to late 1970s or early '80s. Removed tick (maybe 6 hr attachment) had small bull's eye rash & no other symptoms.
Diagnosed 10 or 15 yrs later (1992) by Dr in New Jersey. Treatment off and on since then. Once I thought it was gone, but 2 yrs later, symptoms came back.
Info from LymeNet led to additional diagnosis of Babesiosis and Bartonella 5 or 6 years ago.
I've been blessed that I've never been as sick as most of you....don't know why unless it's the strain of bacteria that I got.
My father, who was mis-diagnosed with Alzheimer's, was correctly diagnosed with LD by the LLMD in NJ in 1992.
He was in his 80s, very advanced stage of LD, NO LOCAL Dr to work with us, more complications than I can list or you'd want to read....so IV treatment was stopped. He spent several years in a nursing home and died in 1996 of Lyme complications at the age of 85.
Because of my work with the Lyme Disease Network of South Carolina, I met a lady from North Carolina whose son had Lyme symptoms identical to what my grandson was experiencing at the age of 12.
Long story short, grandson was diagnosed with Lyme. Thanks to the wonderful people here, he is being treated by Dr J in CT.
I've given the condensed version of our Lyme stories. I hope they make sense.
Sending a BIG THANK YOU to everyone on LymeNet who shares valuable info about Tick-Borne Diseases and their experiences with them.
I don't even want to imagine where my grandson and I would be without the info and support I've received here.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Yesterday was not so good a day since I actually took a double dose of Zanaflex (my muscle relaxer). So I left work and came home and slept for 3 hours, then went back to work for a few hours. Oops.
Generally, I've been doing pretty well lately. I think it's because of the Zanaflex and doing IV nutrients (a modified Myers Cocktail plus B-12 and glutathione). But well still means my apartment is a permanent mess and I can't get everything done.
I'm off any high dose antibiotics because my body can't handle it. I have pancreatitis and maybe a liver problem. So I'm turning to herbs soon.
And I've found out I've got high mercury levels. Hopefully chelating the mercury will help me improve more.
The best thing going on is that I'm about to enter my last semester of law school. I take the bar exam in July, and then I have a normal life back - just work with no school. I think I'll feel a lot better when I actually have free time again.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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