does anyone else worry about this?

Oh yes, I am in the same situation. What got me worried is two friends of mine have lyme and co. and one of them could not remember her name or where she lived. She fortunately has her husband and adult children to watch out for her, she did get diagnosed and treated and still has short term and trouble finding words during conversation.

My other friend has lyme and babs. He fainted, luckily where he was around people, he lives alone too but has many close friends and adult children that lookout for him. he hit his head and now has almost lost all his site. He had initial issues with his eye in addition to the infections from lyme and babs.

I worry about who would watch out for me if my mind really trips out and if i ever fainted, i work at home so it's not like I'm around people every day. I do have some family near by, but they are toxic to me and i keep my distance, they don't know I'm sick, only told my friends and of course my clients.
Most are understanding and many don't understand, like you said we don't look sick, when i feel good i get out to do my errands, but i am usually in a heap sitting or laying on my couch.
I have been educating myself since i got sick and learning so much, i agree not many people will take time to learn about it to understand how devastating it is.
I don't know what else to do, but that has been weighing heavy on my mind too. :(

Dori—
How unusual to have two friends who are so ill with lyme. Although I bet that will become more and more common as lyme becomes an epidemic. I also tried to keep the diagnosis private but I very quickly hit a wall on that and had to come clean.

Healing 98—
Yet another disappointing encounter with a doctor. Sorry you are experiencing the gastro problems—for awhile they took over my life. I'm doing a little better now but just waiting for the shoe to drop.

I had my meltdown for the day. It's been 9 days since I had my IV port installed and was forbidden to take a shower until incisions healed. Everyone told me over and over and over and over that I couldn't get the area wet. But no one told me how to do that.

Now, this isn't just a short term restriction—for the next 12-18 mos. I cannot get this area wet. There is a non-water resistant bandage over it right now but it has to be covered with something—the nurse told me to get "press on" cling wrap and tape it down with waterproof medical tape. I did. IT DID NOT WORK. It was a mess.

And I couldn't let water spray on it directly so I am literally facing away from the shower spray and bending backwards to wash my hair. Now, as most of us know, it i exhausting taking a shower and washing hair with your arms above your head. I am completely warn out. But try bending backwards and washing with one hand while trying to hold the plastic down with the other.

I was so so desperate to shower after 9 days but this was so exasperating I just stood there sopping wet, soap in my eyes, and cried. Pathetic. Plus, the area still really hurts—the nurse changed out the huber needle yesterday and put in a smaller needle—whatever the hospital put in was the biggest she had ever seen. So that's partly why it still hurts but she reprimanded me for being too active and not allowing it to heal.

I don't know how to do this. Baths will work but I don't know how to wash my hair—it took me over an hour to do it with a pail over the tub last time and my arm cramped up.

I guess maybe I am going to have to cut it all off. I can't afford to get it washed at a salon or anything - maybe for a special occasion I can do that although I rarely feel like leaving the house anymore. I suppose I will also need to drape plastic completely over my shoulder so that I'm not relying so much on the tape?

Anyway, any suggestions would be appreciated.

-p

Sorry about your situation Pirouette,
sounds like you have long hair, maybe cutting it for now will lift some burden for you. I used to have long hair, down to da butt. It was a lot of work as a healthy person, had to keep it brushed all day as it would get tangled, close it in the car door on windy days, have to braid it before bed, or i would wake up looking like cousin it in the morning, but then had to worry about strangulation during the night from the braid! haha.
I cut it 5 yrs ago and now is just above my shoulders, will never go back to long hair! So much easier.

Yes, my friends are in the same town, also another acquaintance/friend in the same town ended up in the hospital with Lyme. Seems this area is bad!

An attachment on your showerhead that has a hose and you hold in one hand may help.

Also, with my PICC, I can't find anything to keep the water out either, so I wash my hair in the kitchen sink (my hair is ultra-short, because longer hair never has worked out for me). I lean forward with my head down in the sink as far as I can stand it, and use the sprayer on the sink to wet my hair.

It works very well, and I can just wrap plastic wrap (regular plastic wrap, not that crazy press and seal stuff that sticks to everything except what you want it to) around my PICC site and that's all I have to do.

For bathing, I just do sponge baths with a wash cloth and a small washtub of warm water, washing one part of me at a time. It works way better for me this way, since I can't use my tub for bathing anyway (our hot water tank is too tiny).

And my doctor wondered why I didn't want one of these! Herbs are hard enough to deal with, but at least I don't have to go through this stuff too!

I'm so sorry that you all have to deal with this!!!

I am sorry for your situation. I am sure if it got to that point your family and friends would come get you. I pray that you feel better and that you experience a complete healing. Blessings!

GrandEliasDad

Thanks RedWingInCo! I hope so too! ;)

jrpsf—
So, I got to thinking about this. I live in a very old house and can't retrofit the kitchen sink. But I bet I could get a hand-held for the bath—I could just stand in the tub and bend over and wash quickly. I was not aware of cleansing packs—I looked on your link and I have some chemical sensitivity so they might not work long-term but until I can get myself situation they would probably work very well! Thank you so much.

-p

"Oh yes, I am in the same situation. What got me worried is two friends of mine have lyme and co. and one of them could not remember her name or where she lived. She fortunately has her husband and adult children to watch out for her, she did get diagnosed and treated and still has short term and trouble finding words during conversation.

My other friend has lyme and babs. He fainted, luckily where he was around people, he lives alone too but has many close friends and adult children that lookout for him. he hit his head and now has almost lost all his site. He had initial issues with his eye in addition to the infections from lyme and babs."

This is so absolutely terrifying. This is why I can only log onto these boards once a month or so. This might set off another panic attack for me. I just want to curl up and die. How long did they have Lyme for? Please tell me this is atypical.

I do worry about this too. I feel selfish but I want somebody to know what I'm going through but I don't like talking about it. It is strange how you can seem like a regular person while experiencing hell. It's so strange how there seem to be three schools of people who know about Lyme.

1. People who think you get bit by a tick and feel funny
2. People who have heard that Lyme is really hard to get rid of and a lot more intense then just "feeling funny" but who still have no idea
3. People who have Lyme (or is a very close friend or partner of someone who has Lyme)


Pirouette - I am so sorry that you're feeling bad. My best wishes go out to you! Way to keep a positive attitude! Very inspiring!

Post Edited (bryguy27007) : 11/14/2014 4:58:18 PM (GMT-7)

Bryguy,
didn't mean to terrify you with what i posted here. The people i know that are sick are in their late 60's early 70's, i believe it may be harder on people of that age and up.

I am not sure how long one of them had it, but i know the other friend has had it for 2 yrs, and is using a regular Dr. and NOT being treated properly.
He also mentioned he has mold in his house, and his diet is a lot of sugar and processed food. All these things i believe, has so much to do with his recovery and general health.

So researching and educating ourselves and finding a LLMD is crucial to our recovery, and this forum is a world of information and help.

Everyone is different with symptoms and different infections. I find reading through the posts helps me to cope, but that's just me. Didn't mean to terrify you :(

T -

I would be more than happy to be on "speed dial". If I were a little more organized you could add some of my previous posts to the "welcome" thread. Maybe as things progress I can consolidate them appropriately. I only wish my contributions were consistent like some of the other posters here, who seem to engage very regularly and effectively. Hopefully with some improvement I'll get there.

Sincerely,
Stinky. ;)