Pulling Back from the Brink

Hi Sigrid,

I’m from Smyrna, TN, but I moved to Chicago seven years ago where I met my fiance who got GBS in 2/05.

I know what you mean about watching your husband deal with his pain. I tell Ben all the time that when he hurts, I hurt too. I don’t think there’s anything I can really do when Ben is in excrutiating pain and just wants to be left alone, but when he’s feeling good, I try to make those times really count by letting him know how much I love him and that my life wouldn’t be the same without him. It also helps that Ben is very religious. A few weeks ago when he was in a lot of pain and could only think about wanting to end it, he stopped for a moment and said a prayer. That got him through the night, and 24 hours later, after he was full of medication and no longer in pain, he was glad to still be around. It also happened to be his 39th birthday, and I was able to spend the night with him in his hospital room where we stayed up talking all night long. What had started out as a nightmare for us ended up being something very special that we will always remember.

Since your husband’s pain seems to be pretty predictable, maybe you could remind him that it will only last for a day or two until he gets the IVIG, and everything will be better in a short time if he can just hang on.

I wasn’t sure if I should throw this in or not, but being a Southern Belle, I always try to be extra attentive to Ben, whether he’s feeling good or bad. I bake his favorite desserts for him and try to give him a comfortable home to live in. I’ve even been known to baby talk to him when we’re cuddled up in bed. Since I work full-time, it isn’t always easy going from my professional life to my personal life, but it’s important for me to do the best I can to keep him happy. I truly believe it’s all these little things that have helped to keep us both going over the past two years.

I hope things get better for you and your husband soon!

Love,

Shannon

By the way, I know of people on this forum who receive IVIG every three and four weeks. Could your husband start getting it more frequently so he doesn’t have to suffer? Jerimy is a liaison in Michigan who receives IVIG more frequently. I don’t remember his e-mail address right now, but I’ll send him a message and let him know to get in touch with you.

Hi Sigrid, I am sorry to hear that your hubby feels so badly that last week prior to his infusion. I too was having a similar problem, I was getting my IVIG every 4 weeks. During that last week prior to my next infusion I felt absolutely horrible, like I had a bad flu. They ended up doubling my dosage of IVIG (went from 30 grams every 4 wks to 60 grams every 4 weeks) so that I would have an adequate amount in my body for the entire month and not have that bad week.

Having said all that, I would make sure his Neuro. is aware of how poorly he is doing in that last week prior to his infusion. Ask about increasing the frequency of the IVIG to every 4 weeks at the current dosage to see if that does the trick. If that doesn’t work I have also heard of people that need it as frequently as every 3 weeks. Because of the cost and difficulty of getting IVIG currently his Neuro. may not want to increase the quantity but it doesn’t hurt to ask.

If I can do anything to help please feel free to email me [B]jerimyschilz at hotmail dot com

[/B]Jerimy
[quote=supersij]Can I ask other caregivers how you help your loved ones in their most despondant hours?
My husband gets very sore the week prior to his 6 week time frame for IVIG for his CIDP. Nothing helps the pain. Today, for Thanksgiving, we had to decline 2 invites for dinner- I cooked at home, and he was in bed all day. He is so sore he just wants to ‘end it all’. This is a cycle which comes usually right before the IVIG is due.

How do you support your loved ones? How do you keep positive? How do you keep the suicidal thought monsters at bay?

I’m in a small town, and there are no counsellors or support groups. I’m a professional, and thought I could help us both through this- but sometimes it gets so hard.

Thanks for your help,

Sigrid and Todd[/quote]

Is Todd on prednisone? That often makes life so much darker . . .

My husband would often say “Honey, I am here now and will still be when life gets brighter”. And he was always pointing out ‘the rainbows’ in life. So, many times he would acknowledge my pain (physical/emotional) and then say, “I can’t ask you to stay and suffer BUT I would like to see one more rainbow with you”. And that would give me the fortitude to keep going.

NEVER underestimate the power of a loving Caregiver 🙂 Hugs to you both.

Sigrid – I met two men with CIDP when I was home a couple of months ago. One lives in Smyrna, and the other one is in South Nashville, right near LaVergne. They’re also members of this forum. If you want to e-mail soapy and/or Eric Vance, they may know of some good neuros in the area. I believe soapy gets IVIG on the more frequent side, so he may be a good contact for you. His e-mail address is: [email]klangley@comcast.net[/email].

Judi, that’s so sweet. I’m really adoring your husband!

Shan

Sigrid,

Please keep in touch and let us know how everything goes! I’m glad Todd was doing better after those two rough days! I know it’s got to be like a rollercoaster for you both right now.

Love,

Shannon

Just know that “The Family” is here to help however we can!

[QUOTE=supersij]….- but sometimes it gets so hard.

Thanks for your help,

Sigrid and Todd[/QUOTE]
G*d bless you both. During my hard times, I felt very isolated. It is hard on the afflicted, but just as hard, if not harder, for the loving mate, who wants to help but feels helpless and isolated at times.

he is very lucky to have you, and may G*d bless your soul for being there to help. don’t forget to take care of yourself first.

one thing that would have helped me would have been to have someone keep after the meds and the neuros for me. i found having to do so very straining and hard to pursue. the forum did a lot for me, more than the meds, in my case.

keep the faith, and don’t forget to take care of yourself,
ferenc

Sigrid,

There are quite a few factors that can lead to him feeling poorly after his infusions. A few things to try that I do which help me a great deal:

1. Hydrate well for 24 hours prior to the infusion, sounds insane but it really does help.

2. Pre-med with Tylenol and Benadryl, helps keep the hangover in check afterwards and the Benadryl helps prevent/lessen any allergic reaction.

3. Tell your infusion nurse about how he is feeling afterwards. Sometimes slowing down the rate of infusion helps a great deal with tolerance of the IVIG, which lessens the issues post-infusion.

4. Sometimes a certain brand will just not work well for a person, they are all manufactured/processed differently. Trying a different brand can sometimes make all the difference in the world. When you find one that works well make sure your Neuro. knows. I only receive Gammaguard now because it is the only one I have no issues with.

Just some ideas that have helped me.

Jerimy

[quote=supersij]Thank you so much for your help everyone.
Judyz- we don’t use steroids- had a bad manic episode last year. Our neuro had only ever had one other person go this manic!!

We are currently using our compounding pharmacist to create a cream for Todd’s feet which has 1% lyrica, menthol 10% and camphor 11%. It is like tiger balm but with the lyrica added. Is working quite well.

Our last dose of IVIG Todd had 2 bad days afterward, but is much better this week. Do you ever see bad days directly after the IVIG followed by a better period?

I appreciate you all so much- and will email the TN people separately
Sigrid[/quote]

It is so good to hear from you guys! 🙂 I wish all of you “well” at Vanderbilt. Please let us know what your experience is.