New to the group

March 29, 2004

Hi , Welcome to the group! You will find a lot of wonderful support here. I also have a daughter named Chelsea, she just turned 7 at the end of Feb. She is my only child. Her presentation was much more subtle. Her ped became concerned about her lack of developement at 7 mos. Her initial labs (we were told) were normal, but he referred us to a neuro anyway, who said Chelsea had some benign insult to her CNS and she should catch up. After she passed 2yrs and had met no milestones, her neuro started testing for mito. Her muscle and skin bx were inconclusive but indicated a nonspecific abnormality. Her neuro recently left his practice and I got a copy of her file and found that her labs did indeed indicate a mitochodriopathy, but her neuro felt she was doing too well to have mito. Also after the age of 2, we found Chelsea had severe silent aspiration and epilepsy. The aspiration was not making her ill until she had to start taking phenobarb. 3 months later she crashed and has been tube fed since, that was 4 yrs ago. She also has breathing issues and tends to pool secretions in the back of her throat, but so far she is managing just fine with meds and suctioning, and O2 at nite for apnea. She had a T & A last summer which has made a big difference. She also has a hospital type bed, and sleeping upright has also helped a great deal.

Basically all that is known is that she has severe CNS dysfunction due to an unknown mito disorder. She is nonambulatory, nonverbal, has severe ataxia, and a mix of hypo and hypertonia. While physically she functions at an infant level, her cognition appears much higher, she is just really hard to test because of the low physical skills. She is also very prone to lethargy and illness, and only attends school 2 to 3 days/wk. She is in a sp ed class with other kids who have similar disabilities, and she really enjoys it! Despite her severe limitations, she is a very happy girl and enjoys her life. She loves stuffed animals, balls, swinging, bouncing, being read to, tv, and going to the butterfly gardens and the zoo.

Please feel free to ask anything, or vent if you need an understanding ear.

e, Chelsea's mom(nonspecific mito)

Her is a pic of my giggle girl! I was just messing around with this in a photo program today, thought I'd stick it in.

March 29, 2004

Hi , Welcome to the group! You will find a lot of wonderful support here. I also have a daughter named Chelsea, she just turned 7 at the end of Feb. She is my only child. Her presentation was much more subtle. Her ped became concerned about her lack of developement at 7 mos. Her initial labs (we were told) were normal, but he referred us to a neuro anyway, who said Chelsea had some benign insult to her CNS and she should catch up. After she passed 2yrs and had met no milestones, her neuro started testing for mito. Her muscle and skin bx were inconclusive but indicated a nonspecific abnormality. Her neuro recently left his practice and I got a copy of her file and found that her labs did indeed indicate a mitochodriopathy, but her neuro felt she was doing too well to have mito. Also after the age of 2, we found Chelsea had severe silent aspiration and epilepsy. The aspiration was not making her ill until she had to start taking phenobarb. 3 months later she crashed and has been tube fed since, that was 4 yrs ago. She also has breathing issues and tends to pool secretions in the back of her throat, but so far she is managing just fine with meds and suctioning, and O2 at nite for apnea. She had a T & A last summer which has made a big difference. She also has a hospital type bed, and sleeping upright has also helped a great deal.

Basically all that is known is that she has severe CNS dysfunction due to an unknown mito disorder. She is nonambulatory, nonverbal, has severe ataxia, and a mix of hypo and hypertonia. While physically she functions at an infant level, her cognition appears much higher, she is just really hard to test because of the low physical skills. She is also very prone to lethargy and illness, and only attends school 2 to 3 days/wk. She is in a sp ed class with other kids who have similar disabilities, and she really enjoys it! Despite her severe limitations, she is a very happy girl and enjoys her life. She loves stuffed animals, balls, swinging, bouncing, being read to, tv, and going to the butterfly gardens and the zoo.

Please feel free to ask anything, or vent if you need an understanding ear.

e, Chelsea's mom(nonspecific mito)

Her is a pic of my giggle girl! I was just messing around with this in a photo program today, thought I'd stick it in.

April 15, 2004

Welcome aboard .

Ann

July 23, 2004

welcome to the group. i been with the group now for about 4 yrs and I have learned alot from the group. I have had lupus now for 17 yrs I am 37 yrs old and live in Florida. One thing about this group is that we can cry whine laugh and that everyone understands on what we are going through too. i have been in remission since Nov of 2003 first time I have ever been in remission. I wish you all the luck in the group and I hope you will enjoy the group as much as I have. They are like a second family to me. You are in my prayers and thougths.

Love Kimi

Hello. My name is . I am new to Lupies (I always knew I was a little loopy, so this must confirm it). After living with Lupus for 30 years, it is good to finally have a group who understands. I know there are all sorts of support groups out there, but have never joined any. I have been an island trying to make those around me understand why I am always tired. I was diagnosed when I was 13, but they can trace it back to age 9. I had a wonderful group of doctors from the University of Minnesota who originally diagnosed it. All I had to do was walk in the door and they knew what it was. High doses of prednisone threw it into remission. I have had odd-ball symptoms every once in awhile. February of 2003 I had my aortic valve replaced (this is where the Lupus did the most damage at age 13). Things went wonderful, for awhile. A few months after that I had a rash on the back of my neck. Nothing big, but just annoying. It didn't go away, and the doctor was not sure what it was, but here is some cream and come back if it doesn't go away. It went away there and then showed up on the front of my neck. Still did not go away. After that it started spreading. I got the following: drug induced re-action, or allergy, or maybe it is the Lupus. We don't know. Do a biopsy and we will let you know. Biopsy came up negative, but rash spread, back was covered and now was infected. FINALLY, my general practicitioner sent me to a dermotologist. They did another biopsy. No antibodies were showing up in the biopsies, so no one was quite sure was happening. What a rollercoaster ride. Try this med, now add this med, now add this med. I am on Plaquinil, Accutane, Prednisone, and nothing is working. Now they want to try Imuran. I am hoping this works. My children just want their mother feeling better. My husband is frustrated that he cannot take this all away, and is afraid he is losing his wife. With Accutane and Prednisone altering my emotions, I need someplace safe to cry when it all gets to be too much. I found this site in my search. I am hoping and praying it will help hold me together through all the trials. I wish to be that bright, positive, encouraging person again. Thank you for listening, and I am glad I am part of the group.

July 23, 2004

welcome to the group. i been with the group now for about 4 yrs and I have learned alot from the group. I have had lupus now for 17 yrs I am 37 yrs old and live in Florida. One thing about this group is that we can cry whine laugh and that everyone understands on what we are going through too. i have been in remission since Nov of 2003 first time I have ever been in remission. I wish you all the luck in the group and I hope you will enjoy the group as much as I have. They are like a second family to me. You are in my prayers and thougths.

Love Kimi

Hello. My name is . I am new to Lupies (I always knew I was a little loopy, so this must confirm it). After living with Lupus for 30 years, it is good to finally have a group who understands. I know there are all sorts of support groups out there, but have never joined any. I have been an island trying to make those around me understand why I am always tired. I was diagnosed when I was 13, but they can trace it back to age 9. I had a wonderful group of doctors from the University of Minnesota who originally diagnosed it. All I had to do was walk in the door and they knew what it was. High doses of prednisone threw it into remission. I have had odd-ball symptoms every once in awhile. February of 2003 I had my aortic valve replaced (this is where the Lupus did the most damage at age 13). Things went wonderful, for awhile. A few months after that I had a rash on the back of my neck. Nothing big, but just annoying. It didn't go away, and the doctor was not sure what it was, but here is some cream and come back if it doesn't go away. It went away there and then showed up on the front of my neck. Still did not go away. After that it started spreading. I got the following: drug induced re-action, or allergy, or maybe it is the Lupus. We don't know. Do a biopsy and we will let you know. Biopsy came up negative, but rash spread, back was covered and now was infected. FINALLY, my general practicitioner sent me to a dermotologist. They did another biopsy. No antibodies were showing up in the biopsies, so no one was quite sure was happening. What a rollercoaster ride. Try this med, now add this med, now add this med. I am on Plaquinil, Accutane, Prednisone, and nothing is working. Now they want to try Imuran. I am hoping this works. My children just want their mother feeling better. My husband is frustrated that he cannot take this all away, and is afraid he is losing his wife. With Accutane and Prednisone altering my emotions, I need someplace safe to cry when it all gets to be too much. I found this site in my search. I am hoping and praying it will help hold me together through all the trials. I wish to be that bright, positive, encouraging person again. Thank you for listening, and I am glad I am part of the group.

July 23, 2004

welcome to the group. i been with the group now for about 4 yrs and I have learned alot from the group. I have had lupus now for 17 yrs I am 37 yrs old and live in Florida. One thing about this group is that we can cry whine laugh and that everyone understands on what we are going through too. i have been in remission since Nov of 2003 first time I have ever been in remission. I wish you all the luck in the group and I hope you will enjoy the group as much as I have. They are like a second family to me. You are in my prayers and thougths.

Love Kimi

Hello. My name is . I am new to Lupies (I always knew I was a little loopy, so this must confirm it). After living with Lupus for 30 years, it is good to finally have a group who understands. I know there are all sorts of support groups out there, but have never joined any. I have been an island trying to make those around me understand why I am always tired. I was diagnosed when I was 13, but they can trace it back to age 9. I had a wonderful group of doctors from the University of Minnesota who originally diagnosed it. All I had to do was walk in the door and they knew what it was. High doses of prednisone threw it into remission. I have had odd-ball symptoms every once in awhile. February of 2003 I had my aortic valve replaced (this is where the Lupus did the most damage at age 13). Things went wonderful, for awhile. A few months after that I had a rash on the back of my neck. Nothing big, but just annoying. It didn't go away, and the doctor was not sure what it was, but here is some cream and come back if it doesn't go away. It went away there and then showed up on the front of my neck. Still did not go away. After that it started spreading. I got the following: drug induced re-action, or allergy, or maybe it is the Lupus. We don't know. Do a biopsy and we will let you know. Biopsy came up negative, but rash spread, back was covered and now was infected. FINALLY, my general practicitioner sent me to a dermotologist. They did another biopsy. No antibodies were showing up in the biopsies, so no one was quite sure was happening. What a rollercoaster ride. Try this med, now add this med, now add this med. I am on Plaquinil, Accutane, Prednisone, and nothing is working. Now they want to try Imuran. I am hoping this works. My children just want their mother feeling better. My husband is frustrated that he cannot take this all away, and is afraid he is losing his wife. With Accutane and Prednisone altering my emotions, I need someplace safe to cry when it all gets to be too much. I found this site in my search. I am hoping and praying it will help hold me together through all the trials. I wish to be that bright, positive, encouraging person again. Thank you for listening, and I am glad I am part of the group.

July 23, 2004

, Hello, and welcome to the group. And, yes, honey, we are here 24/7 for each other, with

members in every time zone around the world. I, too have had Lupus for more than 30 years. In

fact, it took most of those years for the docs to remove the word "suspect" from my chart and just

label it SLE. My tests, my rashes, my pain, fatigue, etc. did not fit any known pattern. Duh. Don't

they get it, yet, that that is why Lupus is such a challenge? Sheesh, what a bunch of "Maroons", as

Bugs Bunny would say.

I went through years of skin biopsies, creams, steroid and non-steroid, ointments, special baths (and

believe me this one was the hardest as I cannot get in and out of the tub without help), you name it.

They even sent me to two teaching university hospitals for tests. Nada. Then I took matters into

my own hands, and figured that if it was this persistent a rash, maybe I was having an allergic reaction to something, and we just couldn't find the something. So, I started taking Allegra, and using Bag Balm on my skin. My rashes are so much better after about six months of this, that I am

continuing the treatment. The docs are amazed. When the itching becomes too much for me to

handle, I also use Pramazone 2.4 cortisone lotion, or Sarna lotion to soothe the nerve endings and

take away the itch. I hope this info is helpful for you.

As for the isolation you feel, that, I believe, is the single most devastating aspect of Lupus, or any

other chronic illness. As "advanced" as we are supposed to be, we are still fearful of what we do not

understand and can't change. So, we tend to avoid it. That's why support groups started in the first

place, because patients found their loved ones couldn't handle discussing the illness and it's challenges, frustrations, etc.

Again, welcome, and I hope you write often, give advice where you can, and just enjoy making new

friends, here. Hugs, MM aka: Mike, one of the moderators

July 23, 2004

, Hello, and welcome to the group. And, yes, honey, we are here 24/7 for each other, with

members in every time zone around the world. I, too have had Lupus for more than 30 years. In

fact, it took most of those years for the docs to remove the word "suspect" from my chart and just

label it SLE. My tests, my rashes, my pain, fatigue, etc. did not fit any known pattern. Duh. Don't

they get it, yet, that that is why Lupus is such a challenge? Sheesh, what a bunch of "Maroons", as

Bugs Bunny would say.

I went through years of skin biopsies, creams, steroid and non-steroid, ointments, special baths (and

believe me this one was the hardest as I cannot get in and out of the tub without help), you name it.

They even sent me to two teaching university hospitals for tests. Nada. Then I took matters into

my own hands, and figured that if it was this persistent a rash, maybe I was having an allergic reaction to something, and we just couldn't find the something. So, I started taking Allegra, and using Bag Balm on my skin. My rashes are so much better after about six months of this, that I am

continuing the treatment. The docs are amazed. When the itching becomes too much for me to

handle, I also use Pramazone 2.4 cortisone lotion, or Sarna lotion to soothe the nerve endings and

take away the itch. I hope this info is helpful for you.

As for the isolation you feel, that, I believe, is the single most devastating aspect of Lupus, or any

other chronic illness. As "advanced" as we are supposed to be, we are still fearful of what we do not

understand and can't change. So, we tend to avoid it. That's why support groups started in the first

place, because patients found their loved ones couldn't handle discussing the illness and it's challenges, frustrations, etc.

Again, welcome, and I hope you write often, give advice where you can, and just enjoy making new

friends, here. Hugs, MM aka: Mike, one of the moderators

July 23, 2004

Kimi,

Thank you for the welcome. I do believe this group will be very good

for me. I am looking forward to the laughs (for we all need those),

cries (for there will be some of those, too), and encouragement

(which is where I am lacking right now). I have been so strong for

so long that I have worn myself out, so I am frustrated with myself

during this flare and am trying to not take it out on anyone. I am

always open to lifting others up in prayer. It has been my help in

times of trouble, and is one of the few things you can do inside -

out of the sun.

How do you survive in Florida with all that beautiful sun? It was

hot here in Minnesota this last week and that really aggrevated

things. Of course it would help if I had air conditioning in the car

(I drive 50 minutes to work and 50 minutes back home).

It is a pleasure meeting you and hope to have many " discussions " in

the future.

> welcome to the group. i been with the group now for about

4 yrs and

> I have learned alot from the group. I have had lupus now for 17

yrs I am 37

> yrs old and live in Florida. One thing about this group is that

we can cry

> whine laugh and that everyone understands on what we are going

through too. i

> have been in remission since Nov of 2003 first time I have ever

been in

> remission. I wish you all the luck in the group and I hope you

will enjoy the

> group as much as I have. They are like a second family to me.

You are in my

> prayers and thougths.

>

> Love Kimi

>

> Hello. My name is . . . .

July 23, 2004