Re: CAITLIN__new member

[Guest guest]

Welcome Caitlin,

I'm Helen 56, from NW Ohio... (I live out by the airport) Tell us about how you cope with this dreadful ailment, it must be awful hard to deal with... Do you have family support??? Post when your up to it...

((( Welcoming Hugs )))Helen

Helen-Angelbear1129's Ailment's:1-F.M.S.--Fibromyalgia 2-C.F.S.--Chronic Fatigue Syndrome 3-S.L.E.--Systematic Lupus Erthematosis 4-M.V.P.--Mitral Valve Prolapse 5-Hyperthyroidism/Graves Disease 6-Hyatal Hernia 7-Acid Reflux--(Gerd) 8-Migrains 9-Poly Neuropathy 10-Osteoporosis 11-Idiopathic Edema 12-Hypertension 13-Degenerative Arthritis in head,neck, shoulders, spinal column, arms 14-R.L.S.--Restless Leg Syndrome 15-Hypoglycemia 16-I.B.S.--Irritable Bowel Syndrome 17-Arrthymia's--P.B.Cs--P.A.Cs---One other I don't remember the name of 18-Emphysema19-M.P.S.--Myofacial Pain Syndrome20-Polymyalgia21-T.M.J.--Temporomandibular Joint Disorder22-Corneal Leukoma23-Chronic Sinusitis24-PSVT--Paroxysmal-Supraventricular TachycardiaWHAT HAS HAPPENED: Blind in Left Eye--eye accident-age 3 Rheumatic Fever--almost died-age 17 Pericarditis--almost died-age 17Light Stroke-age 27Goiter Bad/Graves Disease--almost died-age 28Full Hysterectomy-age 40 Gall Bladder out Diseased--almost died-age 48 Anemic twice real bad

Hi my name is Caitlin Kinner. I just thought I should indroduce myself as well. I have a rare gentic disorder called xeroderma pigmentosum. There are only about 1 thousands cases known world wide so there is no cure, but I keep my head up, I mean what else can you do? Well talk to you all later.

Caitlin Kinner

sniff_lover2003

[Guest guest]

It is pretty hard to deal with but you kinda get used to it. I have tons of family support and everyone's always calling me and making sure I'm okay. If I'm really careful and cover up completely I'm fine but most of the summer no one sees me except for at night. During the winter I bundle up tightly for two reasons and head outside, wth tons of sun block, just in case. That's pretty much it. Thanks a bunch, Caitlin angelbear1129@... wrote: Welcome Caitlin, I'm Helen 56, from NW Ohio... (I live out by the airport) Tell us about how you cope with this dreadful ailment, it must be awful hard to deal with... Do you have family support??? Post when your up to it... ((( Welcoming Hugs )))Helen Helen-Angelbear1129's Ailment's:1-F.M.S.--Fibromyalgia 2-C.F.S.--Chronic Fatigue Syndrome 3-S.L.E.--Systematic Lupus Erthematosis 4-M.V.P.--Mitral Valve Prolapse 5-Hyperthyroidism/Graves Disease 6-Hyatal Hernia 7-Acid Reflux--(Gerd) 8-Migrains 9-Poly Neuropathy

10-Osteoporosis 11-Idiopathic Edema 12-Hypertension 13-Degenerative Arthritis in head,neck, shoulders, spinal column, arms 14-R.L.S.--Restless Leg Syndrome 15-Hypoglycemia 16-I.B.S.--Irritable Bowel Syndrome 17-Arrthymia's--P.B.Cs--P.A.Cs---One other I don't remember the name of 18-Emphysema19-M.P.S.--Myofacial Pain Syndrome20-Polymyalgia21-T.M.J.--Temporomandibular Joint Disorder22-Corneal Leukoma23-Chronic Sinusitis24-PSVT--Paroxysmal-Supraventricular TachycardiaWHAT HAS HAPPENED: Blind in Left Eye--eye accident-age 3 Rheumatic Fever--almost died-age 17 Pericarditis--almost died-age 17Light Stroke-age 27Goiter Bad/Graves Disease--almost died-age 28Full Hysterectomy-age 40 Gall Bladder out Diseased--almost died-age 48 Anemic twice real bad Hi my name is Caitlin Kinner. I just thought I should indroduce myself as well. I have a rare gentic disorder called xeroderma pigmentosum. There are only about 1 thousands cases known world wide so there is no cure, but I keep my head up, I mean what else can you do? Well talk to you all later. Caitlin Kinner sniff_lover2003 Caitlin Kinner sniff_lover2003@... 4632 Naomi Dr. Toledo OH 43623 (419) 471-1769

Don't get soaked. Take a quick peak at the forecast with the Search weather shortcut.

[Guest guest]

Hi Caitlin,

Having family support helps out a lot!!! A lot of folks don't have that...Does this cold weather make any difference for your ailment??? Keep in touch when you can...

((( Caring Hugs )))Helen

It is pretty hard to deal with but you kinda get used to it. I have tons of family support and everyone's always calling me and making sure I'm okay. If I'm really careful and cover up completely I'm fine but most of the summer no one sees me except for at night. During the winter I bundle up tightly for two reasons and head outside, wth tons of sun block, just in case. That's pretty much it.

Thanks a bunch,

Caitlin

"When life's problems seem overwhelming, look around and see what other people are coping with. You may consider yourself fortunate."

[Guest guest]

The cold affects me just like everyone else. I can't really do to much so I have to stay inside. But at night I do go outside and freeze. I watched the sun start to rise for the first time in quite a few years and I loved it. It was so pretty, but I had to go inside before it was over. Thanks for the hugs and I'm sending some back to you. angelbear1129@... wrote: Hi Caitlin, Having family support helps out a lot!!! A lot of folks don't have that...Does this cold weather make any difference for your ailment??? Keep in touch when you can... ((( Caring Hugs )))Helen It is pretty hard to deal with but you kinda get used to it. I have tons of family support and everyone's always calling me and making sure I'm okay. If I'm really careful and cover up completely I'm fine but most of the summer no one sees me except for at night. During the winter I bundle up tightly for two reasons and head outside, wth tons of sun block, just in case. That's pretty much it. Thanks a bunch, Caitlin "When life's problems seem overwhelming, look around and see what other people are coping with. You may consider yourself fortunate." Caitlin Kinner sniff_lover2003@... 4632 Naomi Dr. Toledo OH 43623 (419) 471-1769

Everyone is raving about the all-new beta.

[Guest guest]

I'm glad that your able to get out some, it sure has been cold here this week, its suppose to bottom out by the end of the week worse than it is now... Stay warm...

((( Caring Hugs )))Helen

The cold affects me just like everyone else. I can't really do to much so I have to stay inside. But at night I do go outside and freeze. I watched the sun start to rise for the first time in quite a few years and I loved it. It was so pretty, but I had to go inside before it was over.

Thanks for the hugs and I'm sending some back to you.

"When life's problems seem overwhelming, look around and see what other people are coping with. You may consider yourself fortunate."

[Guest guest]

I'm glad that your able to get out some, it sure has been cold here this week, its suppose to bottom out by the end of the week worse than it is now... Stay warm...

((( Caring Hugs )))Helen

The cold affects me just like everyone else. I can't really do to much so I have to stay inside. But at night I do go outside and freeze. I watched the sun start to rise for the first time in quite a few years and I loved it. It was so pretty, but I had to go inside before it was over.

Thanks for the hugs and I'm sending some back to you.

"When life's problems seem overwhelming, look around and see what other people are coping with. You may consider yourself fortunate."

[Guest guest]

Yea I can't wait for that to happen. Not! Lol I'll try to stay warm if you do as well. (Huggs)angelbear1129@... wrote: I'm glad that your able to get out some, it sure has been cold here this week, its suppose to bottom out by the end of the week worse than it is now... Stay warm... ((( Caring Hugs )))Helen The cold affects me just like everyone else. I can't really do to much so I have to stay inside. But at night I do go outside and freeze. I watched the sun start to rise for the first time in quite a few years and I loved it. It was so pretty, but I had to go inside before it was over. Thanks for the hugs and I'm sending some back to you. "When life's problems seem overwhelming, look around and see what other people are coping with. You may consider yourself fortunate." Caitlin Kinner sniff_lover2003@... 4632 Naomi Dr. Toledo OH 43623 (419) 471-1769

TV dinner still cooling?Check out "Tonight's Picks" on TV.

[Guest guest]

I haven't been able to warm up all day... I bundled in sweats and a blanket and still ice cold... That's from the neuropathy the doc says... I have bad circulation... Does the cloudiness we've been having help you out any??? Or is it still too bright for your skin?

((( Caring Hugs )))Helen

Yea I can't wait for that to happen. Not! Lol I'll try to stay warm if you do as well.

(Huggs)

"When life's problems seem overwhelming, look around and see what other people are coping with. You may consider yourself fortunate."

[Guest guest]

It is helping a little bit. I still have to be careful but I can go out and work on things with my skin covered so I love the clouds. It is cold. I freezing all the time no matter how many warm clotches I put on. **HUGS TO ALL** angelbear1129@... wrote: I haven't been able to warm up all

day... I bundled in sweats and a blanket and still ice cold... That's from the neuropathy the doc says... I have bad circulation... Does the cloudiness we've been having help you out any??? Or is it still too bright for your skin? ((( Caring Hugs )))Helen Yea I can't wait for that to happen. Not! Lol I'll try to stay warm if you do as well. (Huggs) "When life's problems seem overwhelming, look around and see what other people are coping with. You may consider yourself fortunate." Caitlin Kinner sniff_lover2003@... 4632 Naomi Dr. Toledo OH

43623 (419) 471-1769

Be a PS3 game guru.Get your game face on with the latest PS3 news and previews at Games.

[Guest guest]

It is helping a little bit. I still have to be careful but I can go out and work on things with my skin covered so I love the clouds. It is cold. I freezing all the time no matter how many warm clotches I put on. **HUGS TO ALL** angelbear1129@... wrote: I haven't been able to warm up all

day... I bundled in sweats and a blanket and still ice cold... That's from the neuropathy the doc says... I have bad circulation... Does the cloudiness we've been having help you out any??? Or is it still too bright for your skin? ((( Caring Hugs )))Helen Yea I can't wait for that to happen. Not! Lol I'll try to stay warm if you do as well. (Huggs) "When life's problems seem overwhelming, look around and see what other people are coping with. You may consider yourself fortunate." Caitlin Kinner sniff_lover2003@... 4632 Naomi Dr. Toledo OH

43623 (419) 471-1769

Be a PS3 game guru.Get your game face on with the latest PS3 news and previews at Games.