Update on us.....

iVillage Member
Registered: 11-22-2000
Update on us.....
Thu, 05-15-2003 - 7:44pm
Hi everyone...sorry I've been MIA, but it's been a really sucky couple of weeks around here!

First of all, I've been VERY sick. This has been going on since my endometrial biopsy in April. I've been dizzy, fallen and almost passed out several times, had shortness of breath and swelling in my legs and ankles (to the point that I gained 12 pounds in 2 days!) and had chest pain and tingling in my arms. I really thought I was a goner for a while there.

I've had every test known to man, and they can't find out what's wrong with me. My neurologist gave me something for vertigo and that's helped a lot. On the way out of his office, though, I got very short of breath and fell again. I guess if you're gonna do that, the hospital is the place to be when it happens. Next thing I knew there was a lady asking me who to call to meet me at the ER and a guy with a wheelchair ready to take me there. Joel was with me and was very scared, but he did a great job! They did more testing there and still never found anything, but gave me a breathing treatment which helped, so they prescribed me an inhaler.

The next day I went back to my dr and got clearance to go back to work...and when I got there, they fired me!! They need someone who will be there and get the work done. I could've argued with them but you know what...I was too busy grabbing my stuff and leaving! I'm so happy to be outta there! I got my final paycheck today and have an application in for rent & utility assistance if I need it at the end of the month. I go tomorrow to get Joel on Medicaid. I'm really not worried about it at all. This is a great opportunity for me, I think.

I've sent out about 30 resumes in the past couple days. There are alot of jobs in the paper and online, so I'm sure I'll be able to land something soon.

Joel's been a butthead today and I'm ready to run away from home. He'll be in bed in a few minutes...thank goodness!!! His baseball tournament at the beach was last weekend, and I obviously couldn't take him (it woulda killed me, I swear) but my sister took him. It was nice to have a break so I could rest.

Hope everyone's doing well. I'll try not to be so scarce, now that I have lots of free time during the day!


iVillage Member
Registered: 04-05-2003
Fri, 05-16-2003 - 10:17am
I am glad you are looking at all this with your job as a positive thing. Who knows, maybe you will land a job that is just the perfect one for you. Also, I'm sure it will help your health to have some good rest for a while. It's one of those things where you want them to find the cause so they can fix it yet it's good they don't find anything wrong. But I guess you know there is something wrong to be that sick. I will pray that is passes.

I know what you mean about wanting to get kids in bed at night. Somedays that's all that keeps us sane!!

Jenna has been happy lately but I can't get anywhere with her therapy. When she cries I just hate doing it and my mind tells me "what's the use?" Why make her misserable and myself along with her, every day and everyday for nothing? She used to reach for toys better than she has been lately and that worries me. Are we just going backwards? Jenna's OTs father died and it has been hard on her. So that's kind of on hold and the PT is sick and going on vacation and so is the speech therapist. She is going on an Alaskan cruise for her honeymoon. It's hard not to be jealous, isn't it?!? I am sounding like I hate my life which isn't true. I have so much to be thankful for. We also noticed that when we put Jenna in her stander, which she hates, her legs turn purple. When we roll her over on the floor and her arm is under her it also turns purple and in a short amount of time like less than a minute. We have a different type of stander on order and now I don't even know if I want it. But they tell me that in order for bones to grow and become strong there has to be weight on them. She goes to the coordinated treatment center on the 4th of June. Maybe we will find something out then. I am feeling alone in Jenna's overall needs. I mean is this all they are going to tell me? They just say they don't know and that she has CP which as I understand is a pretty broad term. I see babies born just as early who are fine and who had brain bleeds that Jenna did not. I know they are all different, but I want a more specific diagnosis instead of just figuring out on my own that she will never walk, talk or eat.

Today is the last day of school for my boys. My parents are picking them up and taking them to their cabin in Minnesota for a few days. They always have fun there. Well better go. My "boss" is calling! Netti
iVillage Member
Registered: 11-22-2000
Sun, 05-18-2003 - 11:42am
Netti, I totally understand your feelings of frustration and aloneness (is that a word?LOL) when dealing with Jenna's treatment. I've had a lot of that too, and it really wears on you.

My ex, Earl, had the same type of disease that Joel has, and they were never able to diagnose it. When Joel was about 2, our neurologist told us that the only way we'd ever get a diagnosis for Joel would be to do an autopsy on Earl....there was just no way without looking at Earl's actual brain to know what was going on.

Earl died when Joel was 6.5, and the first thing I did when I heard the news was call the neurologist and tell him to GET THAT BRAIN!!! So they did, and after 18 months of studying it and trying to match it up to any other case in any other database in the world, they still weren't able to identify it.

In other words, we're the guinea pigs. Any future people with this disease will look to Joel and Earl for what to expect. We don't know what to expect. Joel's case is already different enough from Earl's that we can't really go on that, and since Earl committed suicide at age 40, we have no idea about issues such as life expectancy, etc. It's very, VERY frustrating. Every trip to any dr brings the same response...we don't know, come back in 6 months and we'll look again. I just want to scream, "I've been coming here every 6 months for NINE AND A HALF YEARS!!! What do you possibly think you'll know different 6 months from now?????" Arrrggghhhh.....

Anyway, I'm sorry to go off on that tangent but I wanted to let you know that you definitely are not alone in your frustration! I hope that things will improve, people will come back to work, etc, so that you guys can have a bit of an easier time.

(((HUGS))) to you guys!!