Living with Sarcoidosis from a wife s perspective

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  • Hi I'm Jan

    I was diagnosed with pulmonary Sarcodosis when I was 33.... I'm 71 now.....

    I've had sarcoid in my lungs and eyes. On prendisone for 5yrs then remission for over 20 yrs. One day couldnt catch my breath. Went to pulmonary doctor.

    The Sarcoid. Left permanent scars in my lungs. I now have pulmonary fibrosis and use oxygen on a daily basis and advair inhailer. I've also had to have cataracts removed from both eyes.

    I retired on Jan 1st and I've been in hse since with cough that won't quit. Ugh

    I am a worrior.. I get depressed etc but I never really give up! My goal is to hold my grandbabies babies and that won't be for a while I hope!

    Don't give up the fight my Sarcodosis friend ☺

  • I'm sorry for what you're going through. I'm lucky that my symptoms are not as severe, but it's always a worry, as the sole earner for my family.

    Just a comment about the night sweats. I don't know if it's your husband's case, but for me, it was the prednisone causing the night sweats. Once I moved on to Methotrexate, the sweats stopped. While I was on them though, I slept on towels, often having to shower half way through the night and change my PJs several times. It was a nightmare.... Not to mention the actual nightmares.

  • Brittany, first let me tell yo how lucky he is to have you. You have stayed by his side and not left him. You are truly a good person.

    I was 39 when dx, I'll be 57 in a little over a month but, I believe it came from a bout of pneumonia I had in 1992. They thought I had it in 1995 but remission. But on December 17, 1999, I hit a wall.

    Have him keep appealing ssdi and get a ssdi lawyer. Most people, especially young ones, get turned down the first two times then get it when you go in front af the judge. But you need a lawyer.

    His story could be my story.

  • He is lucky to have your love and support. Prayers your way.

  • Yeah that was a big part of why he was sweating, hes not on that medicine now and he doesn't sweat as much. Right now hes on a sterioid inhaler.

  • Thank you, i hope you get to hold your grandbabies someday too ;)

  • Thank you, that means a lot. We got a lawyer and his hearing is coming up in a few weeks actually. This was actually my letter to help his case and i thought i would share it all of you. Nerve wracking. But he has a good lawyer, the lawyer he has actually had a wife who died recently from sarcoid so he knows first hand what its like, thank goodness, not that hhis wife died, thats terrible but you know what i mean. Hes aslo my lawyer who won my case 4 years ago. I have fibro and borderline personality disorder, social anxiety, depression and OCD. I have so many problems, leaving my husband was never an option. We have two kids together and we're both in this together. We both have health problems so its easy for us to understand each other, we're a team and we work together. ;)

  • Aww thanks girl, means a lot.

  • That's my wife and i.

  • Xxxxxxx Yzzzzzz thats good. I have heard so many stories of ppl leaving their spouse because of this illness and i cant imagine why. I love my husband, he was the first boy i ever kissed and he'll be the last. Sick or not hes my person :) sorry, been watching too much of Greys Anatomy haha.

  • By the way, everybody on this site hates the words "gee you look good"

  • May GOD Bless you and your husband. I have had Sarcoid for years I'm going through the coughing thing now. This is a very difficult disease, it took years for doctors to diagnose this disease. You are so right when you say we don't look sick, but nobody but our families and (sometimes they don't understand) and GOD know what we go through. I'm glad Mike has your support, that is so important. I pray that he gets better. I pray for a cure.

  • Thank you, im sorry you've had to deal with it for so long. :(

  • Hi Brittany, I'm so glad you two are supporting one another. Sarcoidosis is rough on its own, but when folk say, "you don't look sick" or the one that took me down was "everybody's got a story, no excuses". I was officially diagnosed (lung and lymph nodes) 2005 after five trips to the ER by ambulance, the doctor in the hospital giving my family the crazy sign with his finger and finally passing out in a doctor's office and an almost thirty day stay in hospital. I was 53 at the time and I believe I've had Sarcoidosis for much longer but no one ever figured it out. You sound so much like my husband when he tries to explain that I can feel great one moment and totally out of it the next. I pray that he is approved for benefits. I'm going to say when and not if, he is approve, remind your lawyer to of his first denial which can give him credit for an earlier onset date. God's Blessings

  • Oh that is a horrible thing to say, "everyone has a story, no excuses" yeah everyone does have a story but everyone has a different story and i find that ppl who say that to be among the more bitter population. Im drawn to people who even when healthy can still look at you and have compassion. No one wants to be sick, thats what we need to remember. Sometimes people just want to feel like they're heard.

  • I had a funny thought the other day. It was about the Apple watch (I think) and he's riding his bike on a Baja track and it shows his pulse at 134 so I looked at my wife and say that's nothing, I can do that going up the front steps!

  • It's no fun having this illness but it's hard to love someone who has it as well, my husband decided that I was crazy and treated me that way. If we went to the movies, he would park as far away from the theater as possible and I would want to cry trying to make it inside. That kind of mean, when he knew every step hurt. Just being supportive is so helpful. God bless you and your husband. Hope he has a good day, every day

  • Are you still with him?

  • Yes, but we also have a disabled daughter and a very big house! I live like single lady and it works for us. Easy to judge, folks, but it's complicated

  • I'm so glad he has you to support him. I did file for Disability right away when I got sick because there was no way I could go back to work. I got it the first try. I think sometimes people need help in filling out the paperwork. Unfortunately we have to make is sound even worse than it is to get disability. It has been 4 years and there is no way I can work. I can't remember what I went into the other room for. Let alone trying to remember what I am doing at a job. Then there's the physical issues. I pray your husband get his disability and that they have to pay him clear back.

  • Have you ever been driving and suddenly have no idea where you are or where you're going even though you've been driving around the area for 35 years?

  • Lol! Brain fog

  • Scariest thing that's ever happened to me.

  • I'm sure. "Of all the things I loved and lost, I miss my mind the most"

  • I got a great memory, I just wish I knew where I put it!

  • Xxxxxxx Yzzzzzz least you have a great sense of humor, it helps.

  • Some people don't understand but it's a coping mechanism for me.

  • Xxxxxxx Yzzzzzz how i cope too. Most of the time im standing in the kitchen alone laughing at myself because no one else gets my humor lol. Oh well, watcha gonna do.

  • Im not sure that made sense but im gonna go with it cause im half asleep lol.