18 replies to this topic

[libertyrebekah]

Hi,
Ive only been paralyzed T11) for about a year and a half and I have my first pressure sore because I was in and out of hospital and laid up most of this year on and off because of cancer and other issues and lost all my arm strength and all sorts of reasons. Anyway, the sore is right on the butt bone where the leg meets the butt so Im on my back all day and can do the usual like watch tv, read, go online, and other than that I dont have much to do and I guess was looking for ideas.

My other problem is, and Ive never heard anyone else with this before, that I have to use this little lap tray with the computer called a cozy or else it gets too hot and I actually burnt my knee very badly not being able to feel it so I need this. The tray isnt that big or heavy but I feel that even this is too heavy or going to put pressure on the area but maybe Im being overly careful, but I dont think so. So what do you guys do about this? I think the computer shouldnt get that hot or even warm but my husband said its normal and Im really questioning that now.

The only other suggestions Ive had for keeping busy are crafts with my fingers like sewing type activities with my fingers. Im a 29yo female and open to all suggestions. Thank so much. This community is a Godsend-thank you all!!

[airart1]

i don't know what to say i spent almost 3 1/2 years total and 4 surgeries, u just have to stay off the area as much as possible, spent alot of time on my stomach.....same thing, had all the luzuries, read alot, or had my computer do it for me........anything to pass the day.....hope u get well soon.......

[Edinburgh Colin]

libertyrebekah, on Apr 30 2010, 10:25 PM, said:

Hi,
Ive only been paralyzed T11) for about a year and a half and I have my first pressure sore because I was in and out of hospital and laid up most of this year on and off because of cancer and other issues and lost all my arm strength and all sorts of reasons. Anyway, the sore is right on the butt bone where the leg meets the butt so Im on my back all day and can do the usual like watch tv, read, go online, and other than that I dont have much to do and I guess was looking for ideas.

My other problem is, and Ive never heard anyone else with this before, that I have to use this little lap tray with the computer called a cozy or else it gets too hot and I actually burnt my knee very badly not being able to feel it so I need this. The tray isnt that big or heavy but I feel that even this is too heavy or going to put pressure on the area but maybe Im being overly careful, but I dont think so. So what do you guys do about this? I think the computer shouldnt get that hot or even warm but my husband said its normal and Im really questioning that now.

The only other suggestions Ive had for keeping busy are crafts with my fingers like sewing type activities with my fingers. Im a 29yo female and open to all suggestions. Thank so much. This community is a Godsend-thank you all!!

the computer getting hot is normal you could try raising the feet/corners only somehow, sticking something to the tray with tape will help the airflow and stop the tray geetting hot.
Or howabout a hospital table that fits under and over you bed to hold it, get more on it as well.

You can also get trays with beanbags attached to the back which will be more stable, spread the koad and help with the heat issue

either that or get your husband to entertain you more when he can.

good luck

[airart1]

i've got mine on a simple eating tray that i put 2 pieces of wood in the back and it tips it up and staysup so i can use the keyboard or i can fold the legs out and it will fit over my lap as i lay, i also bout a cooler it sits on........works great, and cheap....they make a real nice one on the web, just google laptop tray for bed from about 50 to 100 bucks.......

[guido]

How about creating your own website - everyone has a story to tell.

And the creative process of writing can work its magic in surprising ways.

I came across this website this morning www.weebly.com
It enables you to create and host your own site for free, and the promo video on the home page makes it look pretty easy for all.

[libertyrebekah]

Thank you all so much for your advice, Ill look into things for sure!

[doublelibra]

Hello, and I can say I feel your pain. I'm in the same situation, although I don't have a husband. I live with my daughter and her 7-year-old daughter. My 20-yr.-old grandson is here with us, too. It's great to have them around me, although I'm in bed in my room. I have other family and a lot of friends, so people come into my room and hang out with me quite a bit.

I had a Stage 4 sore in that gluteal fold area, like you describe yours. It is now very tiny, almost a pinpoint, and less than 1 cm. deep. It just doesn't seem to want to close. Through all this time, I've only been allowed to be up in my chair for 2-hour intervals. I have been in bed for 3 years now, and I am definitely sick of it! I don't get bored, though.

There is unlimited stuff to read and learn online. I belong to a bunch of groups. My most active site is Care2, which is an activist website. You might like that if you are interested in any causes such as human rights, environment, animal rights, etc. My name on Care2 is Judy C. if anybody wants to look me up there.

I love music, and listen to LOTS of it. I also belong to some online music groups.

I'm quadriplegc, so can't do many artsy-crafty things, but since your hands work, that might be fun.

The table I use is an over-the-bed table that my daughter-in-law got at Wal-Mart or Target. It's made like a cheaper version of the kind they have in the hospital. I think it could be bad to add the additional pressure by keeping the computer on your lap. Good luck!

[cdieter]

The best thing to put your lap top on would be a moulded tray that will fit your pc on some have a fan in them that cools he pc and all you need to do is plug it into a usb . kmart sells them or maybe ebay. mine works well .I had the power supply burn my leg petty bad so i know what you mean

[Scribbler]

libertyrebekah, on Apr 30 2010, 10:25 PM, said:

Hi,
Ive only been paralyzed T11) for about a year and a half and I have my first pressure sore because I was in and out of hospital and laid up most of this year on and off because of cancer and other issues and lost all my arm strength and all sorts of reasons. Anyway, the sore is right on the butt bone where the leg meets the butt so Im on my back all day and can do the usual like watch tv, read, go online, and other than that I dont have much to do and I guess was looking for ideas.

My other problem is, and Ive never heard anyone else with this before, that I have to use this little lap tray with the computer called a cozy or else it gets too hot and I actually burnt my knee very badly not being able to feel it so I need this. The tray isnt that big or heavy but I feel that even this is too heavy or going to put pressure on the area but maybe Im being overly careful, but I dont think so. So what do you guys do about this? I think the computer shouldnt get that hot or even warm but my husband said its normal and Im really questioning that now.

The only other suggestions Ive had for keeping busy are crafts with my fingers like sewing type activities with my fingers. Im a 29yo female and open to all suggestions. Thank so much. This community is a Godsend-thank you all!!

I can understand your frustration. I've not been in bed for years but recently had to stay in bed about a week. After 2 days I was going mad, and if I had any hair I'd have probably pulled it out!..

I found it very difficult to use my laptop but came up with this idea to make it easier to use. It still took ages to type things, but the day went much faster.

Anything creative is good for morale, so try writing a story, or reply to Threads that interest you on the site.

[Scribbler]

guido, on May 1 2010, 02:52 PM, said:

How about creating your own website - everyone has a story to tell.

And the creative process of writing can work its magic in surprising ways.

I came across this website this morning www.weebly.com
It enables you to create and host your own site for free, and the promo video on the home page makes it look pretty easy for all.

That Weebly looks good Guido, I've bookmarked it for later, but you don't get anything for free so I'm wondering what the catch is.

Scrib's

[airart1]

most of your isp's will let u have space also, like my charter.net that my high speed internet comes from, gives me 10 megs to store, so you can have a web site/home page, but u can't sell on it, but u can build a nice little site, i hadnt fooled with mine in years, or put anything back up there for a long time, since i took my commercial site down...........which they have gotten cheap also, i think my last one i had was 10 bucks a year, but i believe i've seen them for 5 bucks........i need to by up my name again now that its back and not used, we had retail stores called Airbrush USA........i just hadnt fooled with it in years, nothing really panned out on the web for anything, got more business word of mouth and just did alot of artwork freelance.........decided i just wanted to do it for my own pleasuree for awhile as long as i could afford not to get back into it commercially........scribbler, thats what i was talking about, but i used just a bed tray from wally world and cut some angled blocks and put on it, so i can raise it up over my body when i'm on my back, used it when i was fighting a sore, and just kept using it after the fact......plus it holds all kinda crap, also have it hooked up to my flat screen in my bedroom so i can watch a movie or use it as a second monitor.......

[stillgotswag]

Playstation 3! ;)

Playstation 3! ;)

[mellowgator]

doublelibra, on May 1 2010, 10:53 PM, said:

Hello, and I can say I feel your pain. I'm in the same situation, although I don't have a husband. I live with my daughter and her 7-year-old daughter. My 20-yr.-old grandson is here with us, too. It's great to have them around me, although I'm in bed in my room. I have other family and a lot of friends, so people come into my room and hang out with me quite a bit.

I had a Stage 4 sore in that gluteal fold area, like you describe yours. It is now very tiny, almost a pinpoint, and less than 1 cm. deep. It just doesn't seem to want to close. Through all this time, I've only been allowed to be up in my chair for 2-hour intervals. I have been in bed for 3 years now, and I am definitely sick of it! I don't get bored, though.

There is unlimited stuff to read and learn online. I belong to a bunch of groups. My most active site is Care2, which is an activist website. You might like that if you are interested in any causes such as human rights, environment, animal rights, etc. My name on Care2 is Judy C. if anybody wants to look me up there.

I love music, and listen to LOTS of it. I also belong to some online music groups.

I'm quadriplegc, so can't do many artsy-crafty things, but since your hands work, that might be fun.

The table I use is an over-the-bed table that my daughter-in-law got at Wal-Mart or Target. It's made like a cheaper version of the kind they have in the hospital. I think it could be bad to add the additional pressure by keeping the computer on your lap. Good luck!

doublelibra,

bless your heart. i have never heard of anyone being in bed for 3 years due to a pressure sore. you must of had some other complications. i hope you heal soon and are up and at it in no time.

mellowgator

[airart1]

i don't know i was in the bed for 2 years over a place that was no bigger than a toothpick but it was 6 cm deep....we got it to 1 cm deep but it wouldnt go any further, so i finally let the va go on and do surgery, they were great i have to say, theykept me the whole 4 months and took very good care of me in the memphis spinal cord unit....3 years post, going on 4, so i'm doing good, but i do limit my time up, no more 12 hour days without getting off of it, i usually split the day up, i'm keeping my fingers crossed and keep a good eye on everything, sure taught me a valuable lesson......i wish the best for anyone has to deal with this evil, and i do consider it an unbelievable evil....i wish u the best for sure......

[Meadowlarkmark]

I just got back up from being down for a week--this time I actually went to bed at the first signs of shearing on my hip..I read, slept and played with my cell and tried to not fe3el guilty for missing work!

[Tetracyclone]

well done, meadowlark.

[mellowgator]

The Dermawound is $40 a 16 oz jar. You have to buy it yourself but it is amazing and you can heal anything with around $100 outlay on Dermawound from Progressivedoctors.com. Medicare will pay thousands for the vac and the physicians obtain a higher reimbursement. But the vac does not have all the healing properties of dermawound. I had a 1 x 1 cm patch of fibrin slough on my stage 4 wound bed and it was still there after a month on the vac. Two weeks of dermawound dissolved the slough leaving a nice, clean, healthy wound bed. Google 'Dermawound." Quit wasting time and start healing.

Scooby vouching for Mellow vouching for me. We are..

Yours in the struggle,

the above is an old post from scooby gimp. he swears by dermawound. i hope this helps someone.

mellowgator

[tyvin]

Please; never put a laptop on your lap (even if your AB) without a protective surface.

People must realize the fans are on the bottom of the laptop and therefore if you block the vents the thing will heat up pronto.

That's why they sell all kind of items designed to put the laptop on top while in the lap (and don't put alot of stuff around it that could block the vents as well).

I blame the advertisers for putting out these commercial showing people in the park with their laptops on there laps with nothing to protect the person. Let's face it; the more times the laptop overheats the more at risk the laptop is to crash meaning you end up buying more stuff "That's it"; a conspiracy to get consumers to buy more laptops.

"Not"; just a word to the wise

[McRobb]

Hello - working on my 7th month down with a stage 4 pressure sore. Dr was here this evening and told me that he thought it would take 6 to 8 more weeks before the wound vac would be ready to come off. Bummer - I was hoping for only 2 more weeks but we will see.

I do the craft route - and several of the other things. I love to paint but just not possible to do that while in bed so am concentrating on other things. Have done Christmas felt stocking kits (4 of them), done 1 set of cross stitch embroidery pillow cases, stretched 6 antique crochet doileys in hoops to display, read a bunch of books, and watched a lot of movies. If I do crafts while I watch TV, things go better. Computer is good but get tired of it after a while.

If you like movies, look into Netflicks or a Roku - allows you to watch movies from the internet directly to you tv.

I am getting really tired of being down as well but hang in there.

Was watching animal planet and saw a wounded zebra with hyenas surrounding it just waiting for a chance to take it down. At least we don't have ugly animals around our beds waiting for us to give them an opening to get to us! So, I guess things could be worse - anything to keep your spirits up! Best wishes.