New Here and VERY scared (Long post)

[Allisonquast]

Hi Christine. I am a wife of a Wegs guy too sorry you are having such a tough time. We just began this journey in June so we are not the experts like others on this forum. I do know that a specialist is crucial and recovery is slow and frustrating frustrating. Don't be afraid to ask questions and be your husbands advocate! Some men just don't want to bother the docs with questions. I can be the nag! Good luck and keep us all posted. Where do you live?

Allison

[windchime]

Hi Christine,

Welcome to the forum. Like everyone has said there is a wealth of information on this site and people that have been through just about anything. It is a good place to get questions answered, express your fears, or to just vent. Sorry you had to become a member of our "elite little club." With that said I'm happy for the support that is here. Better days are ahead for your husband and family. Keep us posted please. I also agree to finding a good Wegs doc.

[mishb]

Welcome Christine,

I am so happy that you are here for your husband.
It must be so hard with such little kiddies as well. All our carers (mums, dads, husbands, wives, partners, friends) need to be thanked more often for all that they do, and for all that they put up with.

Ask any questions that your husband may have - we are all over the globe on here, so someone, somewhere, will be able to answer for him.

I'm glad he is receiving RTX infusions and hopefully he will start feeling better in a few weeks - just in time for Christmas.

Take care

[DJS]

Welcome to this group. I'm a caregiver also and can share the feelings of being helpless while your mate is near death.
The one good thing is the treatment that he is getting, that combination seems to bring it under control the quickest.
But it will take awhile for the new normal to kick in. In the mean time get a handicap parking sticker for all of the Dr visits for the next 6 months. Hopefully you live somewhere that will be conducive to walking for exercise. The other key is the blood tests to guide the tapering off of the pred. Read all you can about that drug and how to stop it. That will be the next big thing. Good luck from Minnesota!

[Christine1219]

Don, I saw that you were on your couch for 6 months before feeling right. What was the status with your job? My husband works for a small company that does not have short term disability. His employers have been very understanding and supportive so far, but I am very worried about his position. I currently work two jobs and since I just came off of maternity leave, I am not eligible for FMLA until May 2015. So, in addition to the constant worry about my husband's health, we also have financial and work concerns, and our 3 babies. Thank you everyone for such a warm welcome and the support. Again, I am so happy to have found you all.

[Alysia]

Hi Christine,
I don't know what is harder, to be a weggie or the one who take care of...
your husband is blessed to have you, so devoted and caring.
rtx is a great med. a miracle. but it takes time...
meanwhile you have us with you.
this forum, for me, is life saving, physically and mentally.
so, you come to the right place. welcome.

[Dirty Don]

Sighs...I have no job...just an old retired golfer!! Just kidding! But, I am retired, so my situation, other than the disease, doesn't compare to your husband's. Many on here work with WG in their lives...I know it's a struggle and very 'iffy' at times. But, if his employer is understanding AND knows about the kind of disease your husband is now stuck with...then there will come a time soon when he returns to work if only part time at first. The drugs really should help him feel close to normal again. Once he continues work, and he will, his home and daily life will change a lot too. He will be tired, perhaps depressed from time to time (depends on his attitude and ability to stave off the WG effects at times), and many of his evenings will be spent resting instead of chores/duties/meetings, etc. Depends on how bad this is for him and how he reacts to the drugs in the long run. I have a great support system in my family, and most of all, my wife...she keeps me balanced when I think I'm falling, laughing when I think I'm depressed, and she tells it like it is which, no matter how much I whine, is how I like it under these circumstances. Hang tough C...this will feel as if you have the disease too at times...and you will tire of it and try to put it in some corner of your mind...but your heart will tell you he needs your help and understanding as far as you can extend it. This will be as tough on you as it is on him...hang in there...it does get better, just not normal again! Sighs...reaches for cup of coffee...somedays it's hot, somedays it's cool...no matter, I still drink heartily from the cup! Take care!

[windchime]

Don, I saw that you were on your couch for 6 months before feeling right. What was the status with your job? My husband works for a small company that does not have short term disability. His employers have been very understanding and supportive so far, but I am very worried about his position. I currently work two jobs and since I just came off of maternity leave, I am not eligible for FMLA until May 2015. So, in addition to the constant worry about my husband's health, we also have financial and work concerns, and our 3 babies. Thank you everyone for such a warm welcome and the support. Again, I am so happy to have found you all.

The financial aspects of this disease can be depressing. I would suggest applying for social security disability. It will ask if you (your husband) expect to be disabled for more than a year. I would say yes. You can complete the application on line and the clock starts ticking as soon as you submit it. If you are approved you start getting a check in 6 months. I would apply and if he isn't down for a year then you won't need it. However, I would file the paperwork to get the clock ticking on the 6 months. The online application is easy, but you can also go to your local social security office. The United States Social Security Administration

[Christine1219]

Don, you are truly awesome! As is everyone else here. You all make me hopeful that it is possible that my husband will return to work, the golf course and playing with the children

[marta]

Hi Christine and I too am sorry that you had to search us out but glad that it is here you landed because this group of people on here has literally saved my life, possibly more than once.

All the advice you're getting is golden and I don't have much to add to it. I'm only thinking of one possible question for your husband's docs. I know that in cases where there wasn't much progress and the situation seems to be going downhill after treatment, there is the option of plasmapheresis... which is a process that removes your blood and cleans your plasma and then infuses it back into your body. It's kinda like dialysis but for your plasma. I know that Jack had it done a few times, when the proverbial poo hit the proverbial fan. But this is why you need a WG specialist... they know what the options are, and what to look for and when to jump into action. We've had many discussions on here how the biggest problem once we get a diagnosis is being over-treated or under-treated by a well intentioned but ignorant in WG health professional. I was under the care of such a doctor and it almost killed me.... it was this group pushing and pushing me (and I pushed back because it seemed impossible from my town) to get an expert, but I finally did and it was the best thing I ever did for myself and my family.

One other thought I want to share with you regarding the kids. I remember getting driven home after the hospital and seeing a mom and a kid walking down the street hand in hand.... my daughter was 3 years old at the time. I started to cry because at that moment, I couldn't even imagine being able to walk down the street holding my daughter's hand... I truly felt that physically defeated by this disease. But Hana and I go skiing now, we go for hikes, we wrestle, we squak at each other and I love every single moment of it. I can't do the physical feats I use to be able to do, but I spend quality time (both emotional and physical) with my monkey - she's 7 years old now and getting fast on her bike and running, but I can still keep up (for another year or two - ha ha)... So there is a light at the end of the seemingly endless tunnel. I promise.

Baby steps forward. The biggest lesson I got out of this disease, is the baby steps concept. Just celebrate every single little step in the right direction - focus on the positive forward momentum and deal with the negatives without giving them too much power.

All the very best to your family in this insane time. Know that this too shall pass.