Tuesday, April 8, 2008

Hitting a wall...

Friends, I need to complain. I need to gripe, grouse, whine, cry and SCREAM. I am hitting a wall today in a big way and I don't know which way to turn.

My husband got a wild hair today about his Tysabri infusions - he has decided that it is just too inconvenient for him to drive the 35 miles to the infusion center to have this treatment and started looking for alternatives. He has called his doctor and left a message, called an in home infusion company to see if he could get it set up in home. I told him that Tysabri is restricted and can only be given at authorized infusion centers. BUT some little bimbo who doesn't know what she is talking about at the infusion center told him sure they could do it so now he is accusing me of not being on his side.

I tried to explain to him what I know - he accuses me of hiding things from him because he doesn't remember how hard I fought to get this all set up in January. He is so pessimistic at the best of times but today for some reason he is worse. He sent me a long email that included this line: "Is it time for me to just give up? Is it time for me just to say goodbye and alleviate the trouble from everyone else who treats me and worries about me?" What am I supposed to do about this? Part of me thinks he's just having a big ole pity party and part of me wants to have him admitted on a psych hold because I worry he might be a danger to himself. Of course he would not forgive me for something like that.

He is convinced he is going to get fired for using too much time - BUT he has been approved for FMLA on an intermittent basis so legally they cannot fire him. He won't believe me.

His memory is shot, he is not making reasonable and rational decisions. The MS is taking away some cognitive function and I see it but he doesn't. He fights every step but he's not winning and I watch and can't do a thing. I have spent the past 3 hours trying not to cry. I have work to do - it's not getting done.

By the time I get home tonight he'll be acting like nothing ever happened. Meanwhile my heart is breaking. This sucks.


Deutlich said...

I'm really sorry you have to go through this. I KNOW it's not easy and for what it's worth I'm sending very positive vibes your way.


Maxie said...

I'm so sorry. I think everyone who is sick goes through a period where they just don't want to listen to anyone else. I hope things get better soon.

verybadcat said...

Tricia, this sucks. I hate it for you. I can't tell you what to do, only that you know best whether Pete's just being a jackass or having a life-threatening problem. I'm here for you.

Tricia said...

He calmed down - now he's on to his next area of intense scrutiny - making a shadow box of all his military medals and ribbons.

The bad thing about short term memory problems is he forgets things I NEED him to remember. The good thing is he forgets why he was mad rather quickly.

I just needed to SCREAM for a few minutes - sat in the bathroom stall sobbing for about 20 minutes hoping no one would come in - that helped too.

I'm better, for now.


As a mental health professional (yes, I DO get paid to render my opinion...just not on your blog! LOL), I am wondering what support YOU have to talk about/deal with the disease affecting your husband? The truth of the matter is this: He will most likely worsen slowly over time while YOU will not. You need someone in your corner to talk to/discuss/cry with about these issues that affect YOU deeply. He may have the disease of MS, but you run the risk of trauma by association...sometimes a far more difficult ailment to deal with.

I'm just sayin'! Please take care of YOU...

Linda D. in Seattle


"my heart is breaking"

I absolutely agree with Linda. Who do you have to talk with? Here's where a professional could assist YOU in processing YOUR emotions arising from MS.

Your husband may get frustrated, may become depressed, may have difficulty mentally processing information...but you are the one who must deal with the consequences as it potentially gets worse.

Re Tysabri: TOUCH Protocol and infusions

Re FMLA: Overview

Maybe having official references readily available can help.

I'm sorry for your frustrations and slow loss.

Jennifer McKenzie said...

I have no words of wisdom. Only hugs and hope that it'll get better soon.

Lauren said...

Hi Trish,

I am so sorry you are having to deal with your hubby's frustrations and that he is transferring his anger on to you.

Two questions:

1) have you discussed having your husband on an antidepressant with both him and his doctor? It is not uncommon for MS patients to suffer such anxiety, anger, and frustration;

2) have you called MSActiveSource at 1-800-456-2255 to ask if there is a closer Certified infusion center to you that actually does administer Tysabri to patients? Biogen adds new Certified infusion centers every week. Just call your husband's Tysabri Case Manager and provide them with your ZIP code... they should be able to identify and provide you with three names and numbers of Certified infusion centers near you.

As a last resort, you could ask which infusion center his neurologist uses and find out if there are Touch Certified... if not, it only takes Biogen approximately 1 to 2 hours to certify the infusion center, so why not ask?

I am sending you many supportive hugs, hang in there dearheart.

All my best,

Lauren :)

Tricia said...

Oh I gave him the info from Tysabri's site about Authorized Centers. He chose to believe "Asia" at the In Home place who is just a receptionist BTW and not a trained medical professional.

He works at a hospital - they had someone from Biogen there this week. They will be able to administer his Tysabri at his workplace in another few weeks.

It's not that he doesn't have options it's that he is a stubborn pig headed ITALIAN! LOL He wants to argue with me about something.

Now he's back to driving me crazy wanting to get rid of his truck and buy a new one. He basically nagged me into getting rid of my car and buying a new one in December. I'll give in eventually cause it's easier than having the same argument every few days.

I shouldn't blame all of this on the MS - his mom says he comes by some of it honestly from his dad. LOL

I just needed to vent. I'm thankful to have a place to do that. :)

lumpylumps said...

Just surfed on here and wanted to say that I was so moved by your post. I can tell you feel so badly and that you love him so much! I can only offer that I hope the situation improves!

Meghan said...

Wow, Tricia...I just saw this post for the first time for some reason. I'm really sorry you guys are going through this...it sounds like it's eased up for now, and I hope Pete sees the light and continues with his injections. *big hug*