for the spouses and partners out there

1 Recommendation

In this day and age, it is almost a badge of honor to be a "Military Wife" because these two words let the world know the sacrifices that you make everyday of your life. I am a military wife. For me, this is nothing. I wish I had a hat or a t-shirt that said "SARC WIFE" or something similar for two reasons:
1) to remind those that are going through the disease that they are not alone. We are there to support them and help them in anyway we can. We are also going through this with them.
2) to make people ask questions about the disease and spread the word. Breast cancer has a pink ribbon, women's heart health has a red dress, old age has the red hat club. Even Lance Armstrong has a color and this seems really unfair.

I read posts occassionaly from other sarc partners who are unsure what to expect, what to do, how to act, etc. Some of us choose to ignore the disease. This action brings retalitory posts on this site from people who don't understand why their partners ignore the disease. Some of us choose to get really involved and find out as much information as we can. However, when we ask questions, we are often treated with "It's just the medicine" or "I had that too and it's terrible". These responses do not help us in our quest for information or help.

So, if you see a post requesting help in some way or another from a sarc partner, please come to their aid. We understand that the disease sucks and that the medication sucks and that the doctors all suck because they don't understand it. What we want to know is how to make your world a little better because this will make our world a little better. Things can only improve from there.

Irish

5 replies

Irish,
I applaud your incentive and motivation. I am one of the extremely lucky ones with a hubby that has been supportive beyond belief. The other day I was thinking along the lines of your train of thought and being a primary teacher Dr. Seuss came to mind with the Lorax and who will speak for the trees. Or in our cases our carers and who will speak for them. They have pain, and grief and would give all to take on what we bear if only to give us a break. When our brains are foggy and our thinking brain is like swiss cheese full of holes, they are the ones that fill in the gaps.
Cheers to all who walk this journey with us, you often don't get the credit or thanks so deserved. Thank you.

We do have two identifying symbols, the snowflake because each person presents differently and the purple ribbon.
TT

I only wish I had known about this site 4 years ago when my husband was going through all the testing, getting no answers, feeling weaker and wearker, sicker and sicker each day,falling into depression, and withdrawing from life.
We, the spouses, are the cheerleaders. We try to encourage, inspire, and litterally keep them from going over the edge. But there isn't anyone there to help us get through this life changing disease.
If nothing else I hope the spouses on this site find some comfort from those of us that have lived through the worse and now are on the other side looking back. It does get better, your spouse will come back to life again. They may not ever be the way they were, but for some period of time you will feel like exhaling.
I don't know how long my husbands (remission?) good times, will last but I am embracing it while we have it. When or If the disease does get worse agian I feel confident we will be more possitive about enjoying the good days and just hanging on during the bad.
I admire all or you that have loved, encouraged, and been the rock for your sarcoidosis spouse. This is a devastating disease that destroys, not just the patient, but families that don't know how to cope with it. Let those of us that have lived through the good and the bad be a source of comfort for those that need us.

You are all amazing. I am very new to this site and all ready I am thanking God for it. You are all inspireing me. My husband was diagnoised 6mo. ago and I was feeling alone. Thank You, Thank You. Keep up the encourageing words.

I just want to say thank you!!

Laura7 E.

Irish....nice name! I also am a spouse of a Sarcoid patient (Heart and Lung). I came here hoping to get my husband to join so he would have somone to vent with about the disease and it's complications in life. He, unfortunately, isn't a "group" person and I ended up chatting with people with Sarcoid to help myself (and him). I have made a few friends here who I correspond with regularly. It is a great group of people (both Sarcoid pts and their spouses!) I read some of the reponses and questions to him and he listens...I think this has made him feel less alone in his struggles. It has been a long 3 years...he was originally diagnosed with Lung Sarcoid 3 years ago....and in the past year found out he also has Heart Sarcoid. Yesterday's pulmonary doctor appt was uplifting...the good days make such a difference! His ACE test was 72 when he was in the hospital in May...Yesterday it was 4. :-) He has been weaned off prednisone....and is excited about getting his "life" back...as restricted as it has been. After med changes and some pretty scarey moments in May, I think we are on a positive road...but we all know there is always the possibility of relapse in the backs of our minds. I pray for anyone who has this disease as well as the caretakers...we are a fortunate group to have each other. Sarcoid pts--Thank you for saying THANKS to us and we thank you for putting up a good fight and staying with us in our lives!

Robyn (and Bill) Florida

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