Frances? Please, get your husband involved!
Have him, no make him read this board and learn that HE IS NOT ALONE! When you first get this? You DO feel alone and that not one other person is as miserable as you are! I felt that way until I met people with other immune issues during IVIG infusions. That and reading about others on IG Living! I realized that there are many different kinds of problems and that IVIG can help ever soo many. Also to learn about the other options. There is a lot to learn. And in this whole process? You, the caretaker, are alone to many degrees as well! You have to start doing things for YOU so you can be well enough and strong enough to hold his hand when/if he want’s to FIGHT IT!
Most important for you and your husband is to learn to sort of speak ‘doctor-speak’ and be as articulate as one can be about what you do and don’t feel. Then how it affects your life!
BUT? Only HE can speak up for himself! And he better learn to do it soon.
More bluntly? There can be paralysing misery or limited functional misery. I’ll take the latter any day. I chose to get outta my misery and try [at least] to be a bit assertive or aggressive in getting help and treatment! It’s mostly worked, but it’s not always perfect. I think he can too, once he really LEARNS about ‘IT’ and what can and can’t be done. Then what’s cooking in research for the future!
If you were nearby to me? I’d visit you both and give HIM a lecture!
IF I can still speak in almost complete sentences after having: Cataracts [both eyes]; dead thyroid; cancer and CIDP? Not to mention a few ‘suspected’ other goodies? I think your husband can beat me to a pulp any time he chooses, IF he chooses!
There are times for pity parties? But they have to end and life to begin again.
PP’s are really good to have at times, but not all the time!
I hope and pray that you can get him to read this board. To pick and choose what he wants to learn and how he can learn about it!
Keep some of your strength in reserve, never know when you’re gonna need it! Hugs and hope and super good things, and SOON! You both are overdue!!!