when is rains it pours

[Guest guest]

Hi all,

You all know me as the newbie who was just diagnosed about 6 weeks ago with PA

and who is trying to find the right DMARD that will help me with few side

affects. I should be starting Arava any day now(once the doctor gets me the

loading dose which is being sent to her office). Anyway, there is more to my

story. Lately, the expression " when it rains, it pours " has described my life

perfectly in the last 4 months. On July 5th, my mother who had suffered with

Multiple Sclerosis for the last 17 years entered the hospital for a UTI , she

was very sick and stopped eating, she was put in Hospice care and died on July

30th. Her last 4 years were very hard. She became wheel-chair bound 4 years

ago, and soon after was not longer able to carry on a conversation. She could

give you one word answers, but had no more spontaneous conversation. She was in

and out of hospitals for UTIs and Aspirated Pnemonia often. My father devoted

his life to her these last 4 years. He even

retired early from being a Pediatrician to take care of her at home with help

from Attendants. We miss her greatly, but I know she is in a better place and

that she is no longer suffering. My father already has a girlfriend, and that

bothers me a great deal, but that is another story(that is my problem not his, I

just want him to be happy). Anyway, it seems that since my mom's death, things

in my life have gone down hill quickly. 2 weeks after she died, I started

waking up with painful joints in my fingers and my feet and I starting limping

for the first hour every morning. That is when I saw a Rheumatologist and was

diagnosed with PA after a MRI and a bone scan. The day I was diagnosed with PA,

my brother called me up to tell me his almost 3 year old twins were both

diagnosed with Autism that day as well. Now the " rain is really coming down " .

That was a very sad day. A week later, my daughter's 3rd grade teacher called

me up to tell me that Emma is struggling in

class with constant erasing . She was erasing so much that she wasn't able to

get her work done and she was missing every recess because she was in study

hall. She was also straightening things in class constantly like the soap

bottle by the sink and her lunch box. I began to cry. I told the teacher that

Emma has always had a few Obsessive Compulsive rituals at home since she was 5,

but that the Pediatrician told me to not worry and that since it was never done

in public or in the classroom(I always had asked her teachers and they never saw

anything) that Emma would be fine. I always kept an eye on it, since OCD runs

heavily on my husbands side of the family. Anyway, I noticed since my mom's

death, her Obsessive Compulsive tendancies were becoming an issue, it was

becoming full blown OCD. She went from 4 to 20 rituals a day in our home and

now she was doing stuff in the classroom. We started Cognitive Behavioral

Therapy last week with her, and it is already

helping. Even before therapy began, she started really improving in school.

The last 3 weeks, she has gotten her work done on time every day and is erasing

less and less. We are working on her rituals at home, but sometimes it is hard,

because when a child like her holds in her Compulsions all day long, they come

home and sometimes explode with the OCD because it is a safe place for them. I

worry sometimes that my son, who is 7 does not get the attention he

needs when we have to spend so much time with Emma. Anyway, that is what I have

been dealing with. I know I am a very blessed person. I have a wonderful

family and wonderful friends and a lot of faith. However, there are days I am

scared. I am scared of what the future holds with my disease and I am scared of

what the future holds for my daughter. I am sure you have all been scared at

times too. Thank you for listening. Sorry it is so long.

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