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Providing emotional support for a loved one with Sarcoidosis

Jrs_Mom
0 Recommendations

Many of you have probably already heard my story. My 25 year old son, my only child, was diagnosed with Sarcs in February 09. He continues to get worse and is now on Prednisone but he is in a lot of pain. He lives alone, works alone pretty much all day and is, in my mind, very depressed and on edge.
I think he is suicidal, or at least at the point where he just really doesn't give a shit about anything or anyone, including himself. He hates his job and it is very stressful but he needs his job for the insurance.
My question to all of you is what do I say when he is in so much pain he cannot walk, and he is having problems seeing and talking and he cannot breathe. I certainly cannot say "It will be alright" or "You will get better." I cannot guarantee that so what do I say to comfort him, to keep him from going over the edge? He is already distancing himself from everyone because he doesn't want to be a burden and he doesn't want the pity. When I talk to him I try to be strong but then he says something that I have no answer to and I just feel so helpless. When he says the world sucks and people are mean and he feels like crap ! what do I say to him?
If I cry he distances himself even further because he doesn't want to worry me. Please help!!!!

Explore topics in this discussion:

Chronic pain Back pain Oxycontin Suicide Pain Prednisone Valium Depression Sarcoidosis Methotrexate Stress

26 replies

thatsryt

Hi Jrs. Mom:

I started to write you a long winded post about your scenario but scrapped it. What I can tell you is that you joining this site is a great step. This group has helped me in so many ways. I know I am not alone and there are others that I can relate with and share my experiences with. If your son has not joined this community I reccomend he does. I was exaclty where he is when I was diagnosed. Alone, scared and closed off from my family and friends. The community has really helped me. I wish my parents took the same level of interest as you have for your son. But they have thier own issues LOL. If your son has questions you cannot answer this is the best place to get them if they are questions about the disease, symptoms and treatment options. You and your son will learn if you have not yet that alot of physicians no little about the disease and how to treat it. How long has he been on prednisone? Steroids can casue physcologial symptoms. If he is worsening on Predinisone then he may be one of the few that do not respond well and other treatments should be explored. Sarcoid is a very slow disease. If he has drammitcally gotten worse in 4 months and while on Prednisone get a second opinion. If he has only been on presnisone a week or so it may need more time as a positive response can take a while. It also depends on what doasge he's taking etc.. Again get a second opinion. Let me stress that predisone can cause alot of nasty side effects and there are options (valium can counteract some of the behavioral symptoms). I do not know what kind of insurance he has or if would be possible to try to get him to a clinic that specializes in sarcoid if you haven't. What large city are you near? There may be others here that have found decent doctors in your area and may make a reccomendation.

I can't tell you what to say to your son to make him fell better. What I can tell you is he is not alone and he has an extended family here. Wait you can tell him something. Tell him I feel like crap too and would be happy to talk with him personally. I know when my mother or father has tried to talk to me I found it difficult. But talking with others that are goign through the same thing really helped and improved my mental outlook.
Not sure I helped you but if your son wants to talk to me he can so here: mindracer@hotmail.com or 618-670-4909

Mark

shelam

Hi Jrs Mom

I hate writing on here because it always ends up being your life story instead of being what you want it to be - which is supportive and hopefully helpful - but here goes.

I really really feel for you; caring for someone who is ill is never easy and when they distance themselves from you it is so hard to accept, and yes I do have experience, and yes I have been there and worn the tee shirt and no I don't know what you can do other than just be a Mom and be there when and if your son wants to talk to you.

My own son died last year; he had been paralysed for 15 years and had been so very brave but there comes a time when you have to decide for yourself whether you want to go on with the struggle or just wait and see what 'life' or God or whatever has to offer, and go with it. In my son's case he couldn't fight any more and went away; life just was too much to bear. It has been dreadfully hard to face life without him but at least we know he is at peace and not suffering any more.

We never ever pitied him - he would have hated that; instead we just carried on as though he was fine - right til the day he died; we talked to him as though he was fine, made jokes and laughed with him - as though he was fine; and always always loved him. You really and truly can't do more than that.

If you can persuade your son to join this group, to write down what he is feeling, and to read what everyone else is going through perhaps it will help him to believe he is not alone and come to terms with his own awful situation. No one knows if it will get better, but it will get easier, I am sure, if he knows he is not alone in his illness, has someone to confide in, and vent to, someone who really understands where he is at.

I wish I had a magic wand to wave to make everything better for you - but mine's broken just now!! I just wish you strength to cope and pray that today is a better day and maybe the start of something better for your son.

Thinking of you

Shelagh

kbrown3112

I have chronic pain with sarcoidosis and know how hard it is to want to wake up every morning. I know this is NOT the best answer, but my doctor put me on oxycontin to deal with the pain; it has helped tremendously. Also, I am VERY sensitive to prednisone. 20mg gave me "prednisone psychosis" where I was extremely depressed, had rage, etc--basically scared myself and my parents with what I was doing/feeling because it seemed to come out of nowhere (I'm small though, not even 100 lbs, so 20mg was too much for me). My doctor lowered my dose to 10mg and I have been on that for 6 months now and have responded positively. Prednisone is a very powerful drug and can cause a lot of the symptoms your son may be feeling, although the daily struggle of having a chronic disease no doubt plays a role. If he is willing, maybe he can see a MD or psychologist about starting therapy or possibly taking an antidepressant or something until he is feeling better.
The best thing my parents did for me was to let me know that they would be there for me no matter what. They offered to come to doctors appointments with me, they helped me with my meds, stayed home on weekends to watch movies with me, etc. Just having someone else there with me was very helpful. I wish the best to you and your son. I hope he joins this support community, I have found it to be very helpful.

Krissy

Thankfully you have some really good answers here. I really don't know what to say to you. I understand when you describe your son's reactions. He has only be diagnosed this year and already his symptoms are pretty full on. I imagine this means that he was experiencing symptoms before the diagnosis, not knowing what was wrong. This was probably quite frightening. Now he has a period of adjusting to all of this, which is quite hard. Your son has to keep going, so he can't experience the luxury of feeling sorry for himself and he definitely isn't feeling sorry for himself. He probably has some anger. I think most of us dealt with that for a while. I don't know how to deal with my immediate family (parents & my son) regarding this illness, so I don't know what advice to give to you. Has he had any contact with other sufferers so that he can let off steam to someone who actually is experiencing a similar thing? I think about you and your son often.

Jrs_Mom

I guess with all of the input I have received here I have come to the conclusion that all I can do is be there for him when/if he needs someone and to encourage him to keep going every chance I get.
I also know if I spend time on this site, he too will eventually ...right now he doesn't have internet access where he lives. I share what I learn with him and read all of your replies to him, even between the tears sometimes. I let him know what I am writing and asking and then I read him the answers I am getting.
The past few days have been better, he started Prednisone just the other day and last night he called me and said they weren't lying about wanting to eat everything in site. He said he'd eat his arm if he could right about then. We had a laugh. Then I had to yell at him because he was on his way to get some donuts and I told him he needed to eat healthy and forget all that sugar or he was going to feel worse and he'd be 300 lbs by Christmas. We laughed again but I still think I lost to the donuts last night.
I will be spending the day with him at a family lake party so we will just float in the tubes all day, eat some great food and laugh, and probably cry some more. Thank you all for the words of encouragement. I really do think you will be meeting my son here pretty soon. He's not one for opening up to strangers but I think he realizes talking to people who can relate to all that he is experiencing will help and he will like this site a lot. I am like a bad cold that way, I won't go away, and he knows it so I am going to kindly, gently, pull him by the ear to get him motivated to do more about Sarcs and dealing with it and understanding it so he can fight it. I have a recent pic of him, I am going to try to change my profile pic to this new picture so you can all see how healthy he LOOKS. God Bless

Shae44

All I can say is... this group has been a true lifeline for me! It's so hard living a world where everyone in your life is "normal" and although they mean well, nobody knows unless they have truly experienced what is now our "New Normal". My fiance found this site for me a while back because he had a sense of what I needed and I love him so much for that! I am so proud of you for caring enough to try to do all you can to support him. It's not always what you say more so than what you do! It will mean the world to him that you care just enough to reach out in anyway you can to help him! There is nothing worst than feeling like nobody understands what is going on inside you and everyone here does.

I had a rough week this week, having symptoms, yet no answers... famous people dying and it makes you think about your own mortality because this disease is such a mystery. Normally after going to the doctor I would come home and try to close myself off from my family, however, the first thing I did yesterday was to come home and talked to my sarcoid family. I kept checking back to see if anybody had responded and it took a while to get some responses... and when I did, it was from people who had some idea of what I was dealing with and wow, it feels so awesome. Even though everybody may not deal with the same thing, the community is so big until you are bound to find that one person that could make a big difference in how you feel.

After getting some responses... I was like a different person because it gave me some hope and you know what.... instead of sitting around worrying... I got up... put on me some music... I am blasting the "Blues"... you see I'm a Mississippi girl and some of these songs are so funny that they make me laugh... I am even trying to dance a little gig and shaking my hips a little bit! I will probably pay for it later, but hey... it's worth it for right now!

You are AWESOME!! You are doing a wonderful thing for your son and it will mean the world to him. Please tell him that we love him and are here for him. Also, give him a great big hug for us!

carosu

My daughter was diagnosed with Bechet's Disease 5 years ago. This is a rare vascular systemic disease that has no cure nor any real treatment except to treat the symptoms. (sound familiar?)

The diagnosis came after she had been treated for many diseases... most of which made her worse. One day I put a list of her symptoms and "googled" them. The only disease that came up was Bechet's.
There was a specialist in New York City and she flew by herself to see him. His father runs the Bechet's clinic in Turkey.

So, yes I know how awful it is to have a child so sick and to not be able to help. When she was/is in a flare.... I sometimes say..."If I can do anything to help....let me know." If she is having a bad day.... I offer to help and sometimes she lets me. Her attitude is better than mine. "It is what it is....this is the life I've been given and I intend to enjoy it."

Choice? Sarcoidosis or Bechet's? Knowing what I know I would choose Sarcoidosis.

When I first came on this site I was reluctant. I think I had been like an ostrich burying his head (do they really do that?) not wanting to know what may or may not happen. Now... I collect any information I can....

My best tool to fight this disease. My journal that I input whatever is happening with my body...keeping records...

Your son is lucky to have you. One of the side effects of this disease is depression so you are right to watch over him when you can. Keep posting. All of us would help if we could. Mother first.... sarkie second. Carole

Mani

Jrs_Mom

Wow, my heart aches for you, having two amazing sons of my own aged 20 and 17 I have no idea how you manage to stay strong...but Godwilling you will.

The only advice I can give you is simple......

1. cry with him when it feels right (when he wants you to cry with him, beleive me you will know)

2. rage with him when it feels right

3. and laugh with him when you both forget even for a moment how sick he is.

Please, please encourage him to join "our family" he is not alone and neither are you.

Hearing "everything will be okay" from people who are not dealing with this disease can be so difficult at times, because in our heart of hearts, we know the truth, that sarcoidosis sucks!!! but, we also know that we have to live each day for what it is....a gift, a gift that we have been given....that's what I try and do every single day, not always successful, but hey, 8/10 isn't bad.

Lean on us....we are here for you....

From one loving Mom to another,

Mani from Canada

Jrs_Mom

Well, earlier today I posted that today was going to be a good day because I was going to spend the day with my son at a family lake party. Well, I was wrong. My son shut me out, turned off his phone and never showed. I was so disappointed and hurt. Obviously I haven't spoken to him yet but right now I want to ring his neck. Don't get me wrong, I spent the first 5 hrs or so worried and trying to track him down and then I found out he was sitting at home in his front yard...what pisses me off is that he doesn't have the decency to call me and tell me he changed his mind. I don't think it was his Sarcs getting in the way either, he knew he was disappointing me and couldn't face me. So, when I do finally talk to him do I yell at him or pretend I am not mad and it was no big deal so he doesn't get stressed? This is not the first time he has done this (unfortunately he takes after his dad this way)...AAARRRGGGHHHH, after all I do for him and being the only one really trying to help him and support him and he continues to let me down while his Dad and his friends can turn on him, piss him off and he will go running to them. I just don't get it. And I learned something new today, part of the problem with me dealing with his Sarcs is trying to help my family understand just how sick he is. They all think because he doesn't look sick that this disease is no big deal. Back in Feb, when he was first diagnosed I called my step dad who I am fairly close with and I was trying to explain to him what Sarcs was and what his grandson was going through and do you know he interrupted me mid sentence to tell me this stupidest criminal show was on and proceeded to tell me about how some guy just drove his semi under a bridge and tore the whole trailer up and my step dad was laughing. He never even acknowledged what I had just told him. My heart was breaking and it was if I was talking to a brick wall. Now that his symptoms have worsened I never even bothered to tell my step dad. It makes me so angry. I will never forget that conversation. I am so frustrated right now just over a lot of little things and I guess I needed to see my son more than he needed to see me today. It hurts.......I had better go to bed before I kill someone.

Krissy

Jrs Mom, You know, I think that you are really suffering just like one of us. It is worse for you than having it yourself. Unfortunately for you, you do understand what we go through. I have no one close to me that understands. My son tries to and his science background means he comprehends, but half the time he says things like "Maybe you've got something else, not sarc". It is a pretty far fetched tale, the old sarc. You are amazing that you understand and have such empathy for your son. The way you describe him to us tells me you understand too well the physical and emotional toll.
Hey that lack of communication you just went through with him happens with the healthy ones too!

shelam

I just read what Krissy said and I have to agree - I reckon all of us with boys (and girls too) have reached a stage sometime or another where neck wringing is a definite option!!

Don't hold back on the yelling and screaming at him - you have the right to his respect and love in the same way you respect and love him; because he is unwell doesn't give him the right to be rude or uncaring of you. You haven't stopped being his Mom, with all that entails, just because he is ill. and allowing him to be rude and uncaring isn't helpful - it just seems to reinforce the fact that he is ill - you wouldn't have let him get away with it if he was well!!!

As for your step-dad, well all I can say is he is a man - and with the best will in the world, listening isn't exactly on top of their best attributes list; sorry to generalise there but it seems to be soo true!! Try to forget what happened - he might have been having a bad day himself and just couldn't cope with the pain of what you were telling him. I suppose we can never tell how someone else will deal with the bad things in life. I know my husband has this brilliant knack of going 'deaf' when I want to discuss something he doesn't want to deal with, and I bet I'm not alone there.

Goodness me, I have rambled on there - sorry! I am thinking of you, as we are all thinking of you, and hope you find a way to deal with this awful illness and the awful situation you find yourself in. I hope today is a better day for you.

Shelagh

Shae44

Awe... here are my 2 cents... I think being anti-social is part of the disease. For a while, I hibernated and made excuses for not attending certain family events. I think it was mostly out of fear. For example, we had 3 people in our family to graduate... 1 from college and 2 from high school and I missed 2 of them. 1 was my niece that lives near me. You see, I am from a very large and extremely close family and we support every aspect of each others lives. However, it seems like I have every intention of attending family functions and then at the last minute change my mind. I think it was from fear of not being able to keep up or pitied or just whatever psycho babble I could come up with in my head. Two of the graduations where in MS. I missed 1 and then after driving there to go... backed out at the last minute, had almost gotten away with it too, that is until I told my fiance that I wasn't going and boy, did he light into me... he told me that I had missed 2 and I drove all that way to go... he said, "get up, put on some clothes and go... boy... was he mad with me. Well, when we got there I just bursted out crying when I saw where other members of the family was sitting... cuz I was so out of breathe and didn't think I could make it up the bleachers. My sister was like... what's wrong... are you hurting... what... what... and when I explained how I was feeling to her, she said... we want you with us and whatever provisions we have to make to ensure that, we will... next time we can get a wheelchair.... You see... I'm to proud to go into Walmart and ride in those buggy things... I want to walk and push the buggy... I don't want people to think something is wrong with me and when I don't feel like it, I ask someone else to go in for me. I am just as normal as everybody else... WRONG... All I'm trying to say is... we sarc patients have a lot going on inside that is so hard to explain to others. My family had been babying me and letting me get away with things, although I know sometimes I may have hurt their feelings by not attending some events, however, it took my fiance not letting me get away with to open my eyes to what I had been doing.

In summary... don't let him get away with it... sometimes it takes someone really ripping us a "new one" so, we can see how we are giving into this Mysterious disease. I needed that jolt from my fiance, however, I was diagnosed in 2005 and it has taken me this long to stop feeling sorry for myself and wanting to be the way I used to be!

In the end, I am so glad that I went and that episode helped me a lot.

nitt121

Can I ask where does your son live?

boatlady

I too got worse when I was first put on Pred. They determined that they needed more than the initial biopsy they did by scope, and did an open-lung biopsy. It turned out that my MAC had not been determined in my biopsy done by scope. The Pred was worsening my MAC. They had to stop, treat the MAC for 6 months, then resume the Pred. I live a reasonably normal life now. But, I was convinced that I was dying for quite some time. Perhaps, if your son is not responding to treatment, there's more to the story!

Jrs_Mom

My son lives in Milwaukee, WI

Jrs_Mom

I woke up crabby and of course tried to call my son who still has his phone turned off. I still want to strangle him. We were supposed to spend today together too, made plans last week to do this, I insisted I come over and help him clean his house and shampoo his carpet. Now I am thinking he can do it his damn self, if he doesn't care why should I? I am in a funk today and need to take a very very deep breathe. I guess I have just had enough of being a doormat. I am alone today as my husband went to the ball game with his son. I will use this time to find peace before I kill someone.

rarity

I am going to be blunt get him on drugs or one morning you will call and get some bored police detective describing his suicide. He is cutting himself off he loathes his job and now he is not making room from you and the pain he is suffering makes him think the world sucks get him to a primary doc and get him on narcotics to ameliorate the pain. It is better to have a son addicted to pain medication that he is taking properly than to be memorializing one. My uncle could not stand the pain of my heart condition so he shot himself, my brother in law could not stand back pain so he hung himself and both of them did the same things that your son is now doing. Now narcs can depress respiration but in his case it may have an anti-anxietal effect that will counter this effect and give him more air to breathe that is how it works for me Good luck and God bless and if you or sunshine wish to discuss this with me give me a shout adroit406@hotmail.com

nitt121

Sorry for my long delay.. I am sorry to hear of your son at such a young age with so many symptoms. My boyfriend was extremely healthy and lively when we got together and about 2 yrs into the relationship he began to get sick (Aug.07) with the sweats, headaches, body numbness, etc. Well it took 9 months to diagnose him and during that time it only got worst! Sarcoidosis had him just about paralyzed unable to move on the couch. He caught a blood clot from laying which traveled to his lungs. I rushed him to the emergency room just in time the dr. stated. That is when they said something is wrong with him...wow we had been going to the dr for close to a year and they kept saying it was mental- prescribing psych meds. I say all of this because then they put him on 60mg of prednisone. After months of the high dose he went back for a MRI and no changes!!! We went to Cleveland Clinic. They did full body MRI/CT and said he has neurosarc and that is why he wasn't make drastic changes with the prednisone. The prednisone was alleviating the sarc from spreading more but it was not going to do anything for the neurosarc. They suggested remicade (Dec. 08) and methotrexate. He began the treatments in January. The progress has been unreal. He has gone to needing my constant care to life again. He gained 55 pounds on that dang on prednisone (sneaking donuts/ pizza). But now we go to the gym daily. He is off the couch!! It was a struggle-- a real struggle!! I will tell you like I told him. I wanted to leave, I mean he was a boyfriend--not a husband or a son but what I realized was he needed someone to push him so he would push himself. Sometimes we as people will work harder because someone else counts on it, someone else is believing in us and we fight on because of that. I understand the isolation from your son, the cutting off of the phone, and the pain. While I don't have the sarcoid-- I have witnessed its wrath. Stay on him, stay on those drs, if you can go to the dr with him so he knows he is not alone!!!!!! See if they can do a brain MRI and see if his sarcoid is brain affected as Melvin's was. But mostly tell your son he will make it and you believe it. I think with him being even younger than my boyfriend was when he became ill (39) that it is a prideful thing as a man. I will keep him in my prayers and pray that he stays strong through this obstacle he has come to.

Jrs_Mom

Well this morning didn't start out so good. After still trying to reach my son now for the past 4 days I finally called his dad last night and left a message for him to call me. He called me this morning at 7am and so I told him that I had been trying to get a hold of Jr now for the past 4 days and that I needed him to try to talk to him because of all that I read about how Vitamin D and Calcium may not be good for him and that it could actually make him worse. So we hung up, my ex called our son to tell him and my son went off on him and told him that he was sick and tired of me going through other people to try to talk to him and if I wanted to talk to him I should call him. Then he also said, 'What? am I supposed to disregard Dr's orders to take Vit D and Calcium because mom read something on the internet?"..My ex called me to tell me what he said and I was totally flabergasted. What did he mean I should try calling him, I have tried for 4 days? He has caller ID so he knows I have tried calling. I also immediately tried calling him thinking maybe he'd pick up this time and he didn't. Then my ex tried again and now he won't pick up for him either. Personally I am just tired of this. I am trying to help, trying to be strong but it seems all I do these days is cry. It hurts so bad, all I can imagine is burying my child. I know you're all going to say not give up, he needs you, it's the prednisone, get him on meds for his psych, go to the dr. with him etc...but if he won't let me in how the heck do I do that???? I swear I am going to have a nervous breakdown.

shelam

I'm not going to say don't give up; I'm going to say leave him alone for a while to come to terms with his illness himself and then he will get back to you.

It is the hardest thing in the world to help someone who is hurting and scared; everthing we do and say is reinforcing their feelings of fear and panic - 'My Mom's worried, my Dad's worried - I must be in a dreadful state' - and so on, and conflicting advice from his pcp and from others on the internet can't be helping - I mean, we all have sarc and we don't know what to do for the best - we get conflicts of opinion and we worry that if we take the wrong advice the whole thing will end up even more pear shaped than it started off. It's a horrible situation to be in

I feel so bad for you; I don't know if you can stand back a bit and just let him make up his own mind how he is to deal with things - but i truly believe that it is the only way forward for you and for him. He will come back to you - he will realise that he needs you and that you love him and are only trying to help.

You can't afford to have a nervous breakdown by the way. You're needed.

Hope today is a better day for you. Thinking of you.

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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