A husbands cry...

Hi every I'm L-Jay's husband.

It's so stressful for me as a husband that cares for my wife immensely to go to her to a doctor's appointment and see the doctors act as though there are mental issues wrong with my wife. I have to literally show my emotions in a plea with her to get the help that she needs. On one occasion the doctor said that he was going to refer her to a psychotherepist. After he had informed us they yes she does have Sarcoidosis and that all the effects of this disease has yet been determined. To me it fills like everyone one of these physicians are just there to collect our money and refer us to one of their freinds to get a piece of the pie.

My wifes level of activity is almost in existance as of now and it is so hard to stand by as everyone does nothing. It kills me to see her hurt and the thought of knowing that she is in pain is unbearable. Another thing that kills me is that I explained to the doctor that my wife started having seizures on a regular occurance now. The doctor had the audacity asked me how do I know it was a seizure. People don't get me wrong, but if your lying next to your spouse sleep and wake thinking that he or she is trying to wake you and look over to see that their eyes are rolled in the back of thier head and their body is convulsing wouldn't you say as I did that, that was in fact a seizure.

All I'm trying to say that it is us you with Sarc as well as us loved ones that have to make a stand and even talk to our doctors to make sure this is world wide known. I say to myself for my wife that I will make a difference and they will know. I thank God for this site and you that share so much with my wife. She thought she was alone in this but now we see different.

God bless.
Mr L-Jay

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30 replies. Join the discussion

Mr L-Jay,
I am so touched you came here and spoke so lovingly about your wife. She is a lucky lady to have you and your support.
I think I needed your post. My husband feels the same way you do. I know he worry's about me every second of every day. He tries so hard to be emotinally supporotive of this woman who some days is an emotional wreck.
Keep insisting the drs listen. If they don't , find new ones!!!
thanks for posting.
Michelle

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Mr L-Jay,
Your wife is very lucky to have a husband who is so caring.
Unfortunately, there are many doctors out there that have the God-Complex! Perhaps you should -run- don't walk away from this doctor and find another.

It would be nice (in a perfect world) if a doctor does not know something about Sarcoid (and a lot of them do not) they would just say that as of now, they do not know that answer but, "I will search it out and get back with you at our next appointment".

Keep positive thoughts and remember, your wife knows her body better than anyone and she (and you) are her own best advocate!

Take Care,
~Tonya

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Looks like somebody tapped into my page!! ;-) JK

Honey, I want to say, thank you for taking the time out to read and learn. Thank you for going to the Dr's with me and holding my hand when I am afraid. I KNOW its hard living with someone with sarc. Its hard watching someone that you love, suffer. Trust me, I know. I know that you are here for me and I thank God for you.
Together we ARE better!!!! Love ya

Thanks to my Sarky family also. You all have helped US immensely in the past week.

LJay

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Hi Mr. LJay,
The best thing that you can do is like tonya said be your own advocate it is so important, and if you and your wife are not comfortable with the doctor find a new one.
My husband has this disease and i have been his advocate you have to go in there with all of your research and ask them questions. Do not be afraid, it is a wonderful thing what you are doing it great having a spouse that cares enough i think that you are doing a great job!

God Bless you both
Connie

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Hi you wonderfully supportive husband!

First, your wife is a real trooper. She will manage this disease and help others on this site as she does. (she's already doing that!)

Go with her to as many appts as you can manage. My husband takes notes at the appts. Besides getting all the info, the doctors react very seriously to someone writing down all they say.

It doesn't sound like your doctor understands Sarc. Yes, depression can be a symptom as you work through the fact that you just found out you have a non curable disease.. but his comment seems like he doesn't know sarc at all-almost a dismissal.

Remind me what tests you have had done, LJay? Your new symptoms (seizures) sound serious. You can have other issues too with sarc. I was wondering if you've been tested for Bell's Palsy or any of the other auto immune diseases. Is it a Rhueme you are seeing?

Blessings to BOTH of you!

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Hi LJay,

Bravo for you. But you honey have to stand up for your wife and stand up right now. What you described sure sounds like a convulsion to me. Your wife should have a PET scan or MRI of her head ASAP. The only kinda head doctor she needs right now is a good neurologist. There ain't nuthing your wife has that needs psychiarists. What she needs is your support. Your wife is suffering. I suggest you try and contact a patient advocate on behalf of yourself or your wife. Don't be put off by doctors' learning, they are only human and make mistakes. Learn all you can about sarcoidosis so you can stand up to the doctors. Sarcoidosis can affect nerves and brain. It can be deadly, so you really have to put pressure on the docs. Tell 'em you ain't budging from their office until they do something positive to help your wife.

Pris from Downunder

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Mr LJay,

I was so touched for your love of your wife. You are both so lucky to have each other. I know it has to be difficult watching your wife go through this. I definitely agree with Pris about getting the PET scan or MRI. That is how they found that I had chronic sarcs was with a PET scan. If the doctors you are seeing aren't giving you the answers or helping, I would look for a different doctor. I was diagnosed 2 weeks ago. When my doctor was trying to explain it to me I was not understanding. It was very frustrating for me. She then told me to research it on the internet. Grrrrrrrr to me that wasn't the answer that I was looking for even though that is how I found this wonderful site and the wonderful people on here that have helped me so much understand this mess of a disease. I don't live in a big city. I think I am going to have to venture further into Chicago to see if I can find someone that specializes in this area. My doctor that I am seeing is an oncologist/hematologist that is trying to get my anemia under control. I think she might be as baffled about this disease as much everyone else. She is a wonderful doctor in her field of specialty.

I will keep you, LJay, and your family in my thoughts and prayers so that you will be able to find the help and answers you are looking for. Just please stay strong for her even though I know it has to be hard at times. Like I said before, you both are so lucky to have each other. I am single and am pretty much going through this on my own and it's hard too!!! I am just so grateful to the wonderful people on this site that help me get though this!!!

Hugs!!!
Cindy

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Hi Mr and Mrs L-Jay,

Mr L-Jay, you are a wonderful man standing by her right now during her trying times. My best suggestion to you right now is to read the different symptoms on here and save them, show them to drs. Get some pamplets from the site here.

I have faxed info over to drs before another useless repeat appt and I am sending out more now because the drs tell me I can't have Sarc in this part or that of my body. I know I can and this foundation also states it and it looks like I already shown a dr through 1 major surgery but not enough tests where done to check so I suffer. That was before I learned so much.

Have you tried or can you go to Cleveland Clinic. I here nothing but good from them.

And I agree that your wife needs a contrast and non-contrast brain and neck mri NOW along with a PET Scan. Dr just told me gallium is old school and PET's show a lot more. Don't have dr's push you around. Just go to one that is adult enough to want to do more tests promptly.

Another thing I learned is the MRI machines in bigger hospitals show more and have better pictures then your local hospitals or out patient mri centers. I just had an mri of my knee done in Boston and they admitted they don't have the best machines but they are better then where I live.

My companion is so tired of me seeing drs and in the ER or in pain he just leaves now or doesn't talk about it. He is disgusted with the whole thing and can't figure out why the medical field can't make me have just 1 full good wk.

Take care Mr and Mrs L-Jay

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Hi; my husband Rich stands by me as well. I've had the Dr.s look at me as though I have two heads. I've gotten the go to a shrink business. That always hurts when a dr. passes the buck like that. it's just that that particular dr. is stupid. hahahahaha It.s true. They aren't God and they don't know anything more about sarcoid than you or I. there's no cure, face it. however; you can get help so that it doesn't hurt so bad, something to stop seizures (been there). I see an Endocronologist and found that I had low cortisol; because of that I had seizure activity he gave me a as needed perscription to jump start cortisole. boy is that great; it works. That took two trips to the hospital (2 week stays each time), MRI's, CAT Scans, bla, bla, and of course the usual "I think you're having an anxiety attack". Yea, that's what's wrong. Doesn't it just erk you to be put down as a mental patient. when I was working I worked with mental patients all my life then went into special ed; so I can tell them where to put there diagnosis. I have asked my husband to go with to several appts. because I needed someone to back me up in case the Dr. wanted to go the mental route. Thank God for Rich. If I didn't have his love and support I wouldn't even want to bother to live. He gets it. He knows what to do when things happen and I'm out of it. I thank God for his memory. Mine isn't the best when I am having a huge problem because the problem takes every bit of mental energy you have to keep it together. My husband builds power plants; you don't have to be a medical professional to be of more help to a person with Sarc and all the other things you get that stem from the Sarc. He knows me, he feels my pain, (I wish he didn't; I see it in his eyes), and he is my best advocate and friend. Seems like you are that way to your wife. good for you.

Things that can help: find out if anything else is wrong. It happens. I now have osteoarthritis; didn't before, you can get help for that. Find out about low-cortisole (fainting feeling and seizure activity types of things), temporal artieritis (can cause face to hurt and jaw), Facial Palsy ( cheek, jaw and head hurt) could be neurosarc, osteoarthritis (pain in hands, feet and other places; it's on the bones), Pulmonary things (hard to breathe, chest pain), If you go to a Rheumatologist and you think the Dr. is worthwhile otherwize go to another one get a work up. i hope anything I had to say is of any interest to you. who knows right? i've been sick for going on 5 years. i just want my life back. Tell your wife she's not alone; we have each other here. God Bless, Renee

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Hi Mr L-Jay
Thank God for husbands like you. My husband is the same he has supported me, looked after me and been my advocat. He has spoken up for me when doctors have tried to dismiss me and has made sure I have nothing but the best of care. We have gone through 5 specialist before finding one who really cares and understands my disease and I feel really comfortable with him. Keep working together and you will get there to get good care. Never be fobbed off that it is 'all in your head'. Keep smiling even though it is difficult. Love Jane

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I suggest finding another doctor if at all possible. I can understand based on insurance or other factors finding and getting to new doctors can be difficult. I have had to put my care on hold for such reasons. I have gotten so frustrated with doctors that want to just throw anti-depressant meds at me and say my symptom or symptoms are stress/anxiety related. I had stress/panic/anxiety problems for years before I ever was dx with Sarc. I kept telling doctors there is something wrong. My body is telling me there is something wrong. All they did was here take this Paxil or effexor or Zoloft. here throw in an occasional Xanax or Ativan. I took these meds for years. Eventually After many tests and biopsy they found the Sarc. I wanted to go back to every doc that wouldn't listen and slam that report on their desk and say "I TOLD YOU THERE WAS SOMETHING WORNG" but it wouldn't solve anything. I just learned to move on and find someone that is willing to listen. I don't want to just be a Mercedes or BMW payment for idiot doctors. I want doctors engaged in my care. It is hard to find one that cares.

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Hello Everyone,

Once again it is I Mr. L-Jay. First and far most I would like to thank everyone for this overwhelming responce. You truly are God sends and all of your notes of care and direction are greatly appreciated. Thank you from my heart to yours.

As for seeking out other doctors we have done that, inaddition we have take MRI's Cat Scans, as well as numerous blood test chest xrays and others. So like many of you we continue to strive to regain control over something that seems to have no end.

My wife is going to be in the hospital next week for up seven days so that they can monitor the seizures. Is there anyone else that has begun to experience seizures as well. About seven months ago my wife started having them out of know where and now they seem to be more current. See this is exactly what I'm saying who really knows the limit to this disease?

Never the less, I want everyone to know that I prayed for a long time for the right women to come into my life and was blessed with my wife. I feel shes truly an angel in disguise. I made a commitment before God and my wife to stay by her side no matter what and shall never fault. Baby if you read this your my sunshine for you truly brighten every day of my life.
There's not a minute nor second that I don't thank god for you.

Everyone has their perfect match in this world and God gave me mine.

Thank you all and as always God bless. We will keep you in our prayers.

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PoofTheMagcDragn, your not alone in this you now have a wonderful support team that is here for you everyday. Always remember that.

God bless.

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Ljay's husband. Man you are supper cool!
Hang in there with her-learn everything you can about this diease so that you can represent her with the language of this diease. Do not let them tell you just anything read the test,x-rays ect.. yourself. If you donot understand something this site has people who are knowledgeable and will send you in the right area for an answer. Be watchful and prayful. Peace Val A.

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This week its so on. I have our recorder, note book and lots of information for this site as well as you guys so I feel I'm truly prepared this time.

Thanks everyone.

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Hello L-Jay

I hope and pray that things get better for you. It is difficult when you just have doctors who want to collect money and you still feel the same way. I have learn something new about sacord. I did not know it involved seizures. You and your husband just have to keep on trying until, you can find the right physician. I feel you pain. God, bless!!!!

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Bootsey,

Thanks a bunch. It is frustrating but I havent given up yet.

God Bless you

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Thank you myhealth,

I believe you are correct!

God Bless you and yours

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Hi Val,

We should go in there with our laptop amongst other equipment and when he tells us something that sounds wierd, shoot an email to everyone on this site so we can give him the "real" answer!

Lol

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Sounds good to me! lol.... Praying you have a better day. Praying your doctors learn about you and work to make things better,praying for your husband's strenght and his fears. Be slow to speak, quick to hear, and slow to angry. We can't think when we are angry. Peace Val A.

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Sarcoidosis and the Body
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