What does CIDP feel like?

Kelly
I hope it is stress. Combined with so much that you have read on this forum. I had neuropathy in my feet for several years before I was dx’d with C I D P. Neuro does not seem to connect them. That is not to say they are not connected. I kind of think it is a reawakening of a former frost bite. We all understand that wierd unexplainable numb type feeling. Keep an eye on it, but don’t fret. Mention it to the Dr next time you have Emily there.
Mary Ann

Mary Ann,

I really hope it’s just my mind playing tricks on me. I told the nurse a few weeks ago that I thought I was going crazy from reading so much about CIDP. She suggested that I might be having sympathy pains. I don’t know what it is, but it sure is irritating.

I’m just going to pray that I’m losing my mind & I’m not getting some type of neuropathy, LOL.

Thanks,
Kelly

Meadow –

I spoke with a scientist that said that we are safe staying here as long as we stay out of Emily’s room where the mold is growing. Mold spores that are just laying on a surface are not that dangerous. Of course, you don’t want to be around them though. They are most dangerous if they are disturbed because that is when the spores are released into the air. If you leave it alone the mold spores are not being released.

We WANT to leave. We have no where to go. Emily has infusions she needs to get, I can’t just do those anywhere. The only family that I have near me are my mother (no room for us at her house) and my sister (who has cats that make it impossible for Emily to sleep & my sister refuses to lock the cats out of the room because she’s a crazy cat lady). We’ve stayed with my sister quite a few times & it was just not good for Emily. She was exhausted & her CIDP started acting up because of it.

My husband’s family is about 20 minutes away but they are all smokers & I don’t want Emily to be around cigarette smoke. There is no way that they will allow us to live there & them have to go outside to smoke. They do it when we visit but they don’t want to do it all of the time. Besides being around cigarette smoke makes ME extremely ill. I’m an ex-smoker & now I’m very sensitive to it.

We can’t afford to go to a hotel. We can’t afford to move. Every bit of money that we had in savings has been used up to pay for bills from when my husband had to take off of work when Emi’s been in the hospital. He only gets 6 sick days a year and after that he’s pretty much screwed. He had to use 4 of them when he hurt his back & could not even walk. He went back to work against his dr’s advice because he knew that we could not afford for him to have anymore time off. The dr wanted him to go on medical leave but that would have meant that he had to take 5 days unpaid (that’s part of his sick bank rule). Missing a whole week of pay would have destroyed us financially, especially since we are already just getting by. Our credit card is near maxed out (we keep a lower limit on it) and we had to take out a loan over the summer to catch up on our bills after Emily was in the hospital for 5 days in August with the catheter infection. The bank won’t extend the limit on our card because they know that we are struggling. They see the zero balance every month in our bank account.

It’s expensive to have a child in the hospital. All of Emi’s food is free but I have to pay for mine and since I stay with her all the time, it get’s expensive. It is $6 for breakfast, $6 for lunch & $7 for dinner – flat rate. Since I made my husband go to work on some of the days (because we couldn’t afford for him to miss them) I didn’t have anyone to bring food from home. There used to be a kitchenette that had some food (like cereals) that we could eat from for free but the hospital got rid of that. Also, it used to cost $4 everyday for my husband to park at the hospital. They finally got rid of that over the summer though. Thank goodness! So we had to pay for all of that ON TOP OF having to bring food from outside for when Emily would refuse to eat the nasty hospital food. And to buy her the bribes that we had to use sometimes to get her to do things that she just didn’t want to do.

The apartment complex has offered us another apartment but as soon as we leave this one they will remove (or throw bleach on) the mold. They know that there is a problem here but they aren’t taking care of it properly. So we can’t take that other apartment then have the mold tested here. I’ve thought about just leaving & being thankful that more damage wasn’t done to us. BELIEVE ME, it would be SO much easier. But then I think that I know this info now, the apartment manager has told me that this is not an ethical corporation & he just wants to throw bleach on the mold & call it a day. They don’t want to take care of the problem properly because it is opening up a can of worms for them. There are already 3 other apartment in my complex that have been deemed unsafe to live in beacause of mold. What if some other young family moves their child into that room & they get sick too? I knew about this problem & I didn’t pursue it. I would forever feel ethically responsible for that & even if I never found out about it, I’d always worry that it happened.

If the mold is the problem then the damage is already done. It’s not like it’s going to make Emily worse. She already has the darned disease. She does NOT enter her room. The door is barricaded & she knows that she is to stay out of there.

So that is why we can’t leave. We need to find out what is growing in her room. If it is a mold that can cause neurological problems then the dr’s will treat her with an antifungal along with her IVIG. I can’t get a dr to give her the antifungal without knowing for sure that she needs it.

I’m stuck. I want to get my kid better. The only way to make sure that she gets the treatment that she needs is to get the mold tested. We’re between a rock & a hard place.

It’s easy for people to say that we should just leave but they aren’t in our position. I have a 5 year old child that is sick with a disease that kids don’t get. She’s been exposed to mold since she was 6 months old. Is there a connection? I think so. Will I do whatever it takes to find out for sure. ABSOLUTELY!

And yeah, I’m really hoping that these wierd pains are just stress. I’ve been very hesitant to even mention it to people because I don’t want to make a big deal out of it. I didn’t tell the dr because I didn’t want her to think that I was a looney.

Now that I’ve aired all of our business, I’ll go now.

Kelly

Meadow –

I do appreciate your advice but what you aren’t understanding is if the mold is making Emily sick then she needs to be treated with an anti-fungal. I can’t find a dr to just give her an anti-fungal without knowing for sure that she needs one. Thus the need to get the mold tested.

And I have a lease. That means that I just can’t leave. It would cost me more money to break my lease than it would to get the mold tested.

I could take another apartment in my complex but there are at least 3 others that have been deemed unsafe to live in due to high levels of mold. What happens if I move into another apartment that has a more dangerous mold growing in it? That would be taking Emily from a bad situation into a worse one.

There are lots of things to consider with this decision. Believe me, I second guess myself constantly but I feel that getting the mold tested is the BEST way to help my daughter. It’s easy to say to just leave when it’s not happening to you or your child.

We don’t spend much time at home anymore. Emily is in school during the day & then we try to go visiting friends & relatives, go to the library, the mall or play outside if it’s nice enough. We do sleep here because we have no other place to go. We are also here on treatment days because it’s not possible to do it some other place. There is too much medical equiptment to cart around & I’m just not comfortable with that anyways.

Put yourself in my shoes. My kid is sick. I’m pretty sure that the mold growing in her bedroom is contributing to it, if not the cause of it. The apartment complex has been covering it up for YEARS. My daughter’s medical treatments cost $25,000 a MONTH. We have a MILLION dollar lifetime cap on our health insurance. After that is up, I don’t know what we are going to do. If I don’t pursue this then the aprartment complex gets to continue on covering up this problem, possibly making more people ill & my daughter gets to be put on Medi-caid & have her IVIG treatments denied. Not an easy decision to make.

Thanks for your input though.
Kelly

Thanks Liz,

The more I think about it, it probably is just stress. I was so hesitant to say anything about it because I’m not one of those crazy people that thinks they have a disease because someone else has it. I have a person like that in my family & it drives me NUTS!

I guess I started thinking about it too because the new neurologist said something about Emi’s neuropathy being hereditary. Of course I started thinking back over my lifetime trying to figure out if I ever had numbness or any other wierd sensations.

I’m trying to de-stress myself. I’m taking it 1 obstacle at a time. It’s just that they seem to be piling up very quickly. But I know that is how it always works. I’ll be fine.

Thanks for your input,
Kelly