Fanny's Sarcoidosis Presentation to Sarcoid Support Group

Fanny Smith's

Presentation to the

Sarcoidosis Support Group

Meeting for June, 2005

Fanny Smith

I want first of all to thank you for a wonderful retreat. I had never been to a Sarcoidosis retreat before and it was very uplifting to me. I really appreciated Dr. Drake and Dr. Kane coming to share with us. I also know more work than anybody can really imagine went into putting the retreat together and I say “thank you” to all of you. I understand why the group from Indianapolis call Becky the Cookeville Tornado!!

I appreciated the demonstration from the police department on seat belt safety too. It was meaningful to me as I was involved in a terrible car accident several years ago where a car flipped, and I know the importance of wearing seat belts.

Now, when Becky ask me if I would be willing to speak today I felt very honored and accepted the invitation. Later I got really scared and wondered just what I could share with fellow Sarcoid sufferers – some of you have dealt with much more from this disease than I have had to endure at this point. I also know that you have as much information about it as I do – and some of you have lots more. The talks I’ve given in the past have been to people who knew nothing about the disease so this was new to me. I almost called her back and said Becky I don’t think I really have anything to share, but then I decided that maybe I could talk about dealing with it and that I could try to give some positive thoughts about it. Something that we can hold on to – kind of like the hope that Dr. Drake gives about maybe finding a cause and a cure in the future. Wouldn’t that be wonderful!!!!

Sarcoidosis is a crazy disease that affects each one of us differently – each one of us handles this disease differently and our doctors even handle it differently too. It seems to fit with an article that a friend of mine shared with four of us a few weeks ago. Each Tuesday morning at 6 AM four of us meet for breakfast at Shoneys in Oak Ridge. It is a time to share, encourage, and pray. We’ve been friends for many years and know each other pretty well – we’ve gone through lots of things together – from birth of children to birth of grandchildren to death of two of the husbands – we’ve dealt with one of us having breast cancer and me being diagnosed with Sarcoid – we’ve laughed together and cried together. I worked for one of these ladies for about 15 years and I have to tell you that she holds a very special place in my heart – both for her knowledge and her love. Our age range varies from about 50 to about 76 – a bond of love – not age binds us together.

The article that Evelyn shared is called the “One Egg Special” – it was written by Mike Cope and it goes like this.

He says - For fourteen years, I’ve been having breakfast most Wednesday mornings at the infamous Towne Crier. It’s been a wonderful time to be with friends from all over town. As things have changed in our town we’ve just smiled, enjoyed our friendship and remembered that what goes around comes around.

It’s rare for anyone to order anything other than the One Egg Special. (Yes, it may remind you of the Blue Plate Special that Barney used to order at the diner in Mayberry.)

One egg, meat, and bread. It’s $2.19 for the breakfast. Yes, those of you in Manhattan, you read that correctly. It’s less than you pay for a gallon of gas. It’s less than we pay for gas right now!!

I’m the “normal” one egg special guy: one egg over medium, bacon, and a biscuit – with water. No bells and whistles. Just pass me the strawberry jam.

Eddie orders the same thing, except that he has iced tea. That’s right: iced tea for breakfast. When the waitresses see him coming, they know it’s time to pour the tea. (One of our ladies drinks ice tea for breakfast too)

Terry’s one egg special goes like this: one egg scrambled, bacon, and a pancake (believe it or not, they’ll substitute a pancake for the biscuit). Water.

Don’s order adds an interesting twist: “I’d like the one egg special with an extra egg.” Now I’m not Einstein, but wouldn’t that be a two egg special? Apparently not. Coffee

Phil is Mr. Atkins. He asks for extra bacon instead of the biscuit. Bring on the protein; hold the carbs. Diet Dr. Pepper to drink.

So there you have it. We place five “one egg special” orders. But they look very different.

I read this article and thought that is how we are – we all have Sarcoid – it affects all of us differently and we handle it differently – same disease – different problems – different ways to deal with it.

I’ve had some new problems the past few weeks – right before memorial day I started running a fever and having chills at night – went to see my family doctor – he did an x-ray and didn’t find anything – thought it was a virus. Our family went to the mountains over memorial day and I ran a fever and had chills all weekend – upped my prednisone and took advil to get through the weekend.

After we got home I got really sick – called my pulmonary doctor and he called in an antibiotic. Then I went back to the family doctor (actually, he was on vacation – saw another one) and he put me on five more days of antibiotic. Everything seemed to be getting better after all the antibiotic except I had had this terrible pain in my left side so I mentioned it to Dr. Banick when I went in to see him. He did an x-ray and it showed a spot in the left lower lobe of the left lung – had a CT scan – Dr. Banick ordered a needle biopsy – went in Tuesday to have the needle biopsy done - all prepped and ready and the radiologist came in and said that he had looked at the last CT scan made two weeks ago and wasn’t sure he wanted to do a biopsy – he wanted to do another CT scan with high level resolution – we said great – the spot was almost gone – no needle biopsy. Worked out okay but several weeks of stress and worry and concern.

However, I've always believed that looking for the positive is the best way to deal with stress, so I try not to dwell on the negative but to look for the positive. I'm not always good at it. Some days it is easier than others. When I get too concerned about me, I stop to think of the many good things in my life and I do have many - my husband of 41 years (we married as little kids you know), two wonderful boys, two very special daughters-in-law, four precious grandsons and a little eight month old granddaughter, my church, my friends, a job where the people I work with are very caring and concerned, my home, my country - the list goes on and on.

It is hard for Ray or the boys to talk much about the fact that this doesn't go away - Mike (our oldest) said one time, "it is just so hard to talk about you being sick" - (that was kind of a shock - I had never really thought of myself as being sick, I had just felt this was temporary and it would go away, but I have had to accept the fact that Sarcoid is a form of sickness - that I can't always do the things I want to do – and that it may never go away).

I sometimes have to pace myself and do what is the most important at that time – that it may never get better - that is hard). Even though it is hard for my family, they are also my strongest support system - all of them - Ray, Mike & Maggie, Zane & Laura, and even my grandchildren - Logan (he is eight) had me put on the prayer list in his class at church not too long ago.

I know they are there for me and that I am always in their prayers. The grandchildren are such blessings – our oldest three (Jake 10, Logan 8 and Sam 4 are coming to spend a few days next week and I can hardly wait - we kept Luke (our little 3 year old) and Kate (our little 8 month old) from Tuesday to Sunday in June while their parents went to Colorado. I feel very fortunate that I can keep them. Now, don’t think I don’t get tired but it is worth it to get to keep them.

Anyway, The next weekend Zane, Laura, Luke & Kate came for Y-12 Family Day and when they got there on Friday night Luke came running in the house – jumped in my arms and said “Dranny, I came back to help you water your flowers.” I picked him up and hugged him and said Oh, Luke I have missed you so much and he said Oh, Dranny I have missed you so much, too. My goodness – my day was made – who could ask for more. Sarcoid or nothing else can damper the love of family and those little arms around your neck. He called me the night after the biopsy was called off to tell me that “Dranny, I’m so glad that you are feeling better.” If I hadn’t been feeling better I would have felt better then.

Support from friends and coworkers is another tremendous help – I have learned throught the years who to turn to for support and who to just let go. it isn't always easy to explain to people what is going on with my health - I don't always look sick - just heavier than I used to be from the prednisone - and it is hard to explain why I can't always do some of the things that I used to do or why I stay so tired. Fatigue is another symptom of the disease that I deal with on a regular basis.

I’ve learned several things through the years about me and about this disease. I’ve learned that I can’t explain it and most of the time I don’t even try anymore. Someone says – “how are you” and I say ”fine” except to a few special people. If someone wants me to do something that I can’t handle at the time I just say I can’t do it or whatever and let it go at that – I don’t try to explain anymore.

I’ve also learned that when I start getting really tired the disease is usually presenting itself somewhere else and it is going to mean higher prednisone again, more tests etc..However, even though not everyone understands most of them are supportive and encouraging and when I do look bad are quick to comment on it. I have a wonderful group at work who are supportive and encouraging. You would not believe all the hugs and comments I’ve received from people this week about not having to have this needle biopsy.

I also sometimes have to remind myself to be thankful for the doctors and the tests because without them this would have never been diagnosed and things could be a lot worse. I have to be thankful that they have prednisone or I would be in real trouble. In September 2003, a lung was beginning to collapse because a bronchial tube was blocked with Sarcoid - the Prednisone has helped that - without it I'm not sure what would have happened.

Karen Duffy, (that name is probably familiar to some of you) is someone that I admire because of how she seems to handle this disease - a former model, actress and still a spokeswoman for Revlon and Almay - she has a very serious form of Sarcoid called Neurosarcoidosis - Sarcoid of the central nervous system, which left her partially paralyzed for a while, in pain, and at times near death. She has been on very strong treatment for a long time and she is improved but her disease is still not in remission, however, her attitude about the effects of this disease is wonderful and what I admire. She said that she can run from life or she can run toward live - she chooses to run toward life and enjoy every minute of every day. Her objective is to turn something negative into a positive in her life by helping others. What a wonderful attitude – I already see that in some of you even though I have only known you a short time.

That is the attitude that I want to develop. After all none of us have a promise of anything beyond right now on this earth. I realized how true that really is on July 14, 1991 when I was in a car wreck that I could easily not have survived. I had a hard time with it but it also made me realize how fragile life really is – another incident happened this year that reinforced that same thing – one of the doctors that I have seen so often this year is a dermatologist – I’ve been up there enough that everyone knows me.

Well, I went in the last of May and on the way back to the room the nurse that was with me said have you been in since Michele had her car accident – I said NO – she said well, she was on the way to work last Wednesday – she flipped her car – she didn’t have on her seat belt – it threw her out and she is paralyzed – Michele was one of my special nurses – she has a husband and four children. I tell you this just to reinforce how fragile life really is – One Thursday night in June we got a call from the Oak Ridge Police Department hunting a chaplain (Ray volunteers as a chaplain for them). A lady was driving into Oak Ridge from Knoxville and looked down to change her radio. When she looked up her car had veered over onto the shoulder of the road and there was a man riding a bicycle directly in front of her – she hit him – he died at UT Medical Center a short time later – two families lives changed forever in the blink of an eye.

So, I can worry about Sarcoid or I can live - why waste time worrying about what the future may hold - I can worry about bridges that I may never have to cross or I can choose to just deal with where I am today. That isn't always easy to do, (or at least it isn't easy for me) but it is something to reach for and an attitude that sure helps deal with the stress.

Now out of that terrible accident that I was in came a good thing too - two wonderful ladies at our church decided that if that little 2 year old boy had had something to hold that night he might not have been as hysterical so they came up with a wonderful idea called “Love Bears”. Our church makes these little bears and gives them away to children in crisis. They are at MMC, they ride in Oak Ridge police cars, they are at Ronald McDonald house, they are at ADFAC, the Women’s Shelter, and they sometimes ride Lifestar. They have even been to Russia and Romania and a mission team from Nashville took them to Honduras and even taught the ladies there how to make them.

To date we have given away somewhere between 9,000 and 10,000 of them to children in crisis. We know they are now being made in Nashville, Florida, South Carolina, and Louisiana. I’m really not sure where all people have asked for our pattern. They have also become popular with our older people. One lady took one into surgery with her, another one slept with one in her bed while she was in the hospital. The thing about Gladys was that when someone commented on it – she’d give it to them and then call someone to bring her another one. You’d have to know Gladys – she is 95 – she has Sarcoidosis – she is an inspiration to all of us and lives her life to the fullest. She has even had the retirement center where she lives make the bears for us. We’ve got cards – phone calls – all kinds of response from them.

Good can come from the worst of situations. Not too long ago I was in the waiting room at the hospital and a little boy went by swinging one in his hand – I have to admit there is no way to tell you how it made me feel. One of the cutest things is a little boy who phoned to thank us and said I got the Blue One! Yesterday, Will, was 14 years old – his mom was 6-1/2 months pregnant with him when the accident happened – she didn’t survie but because she had on a seat belt he did survive. UT said if this baby can breathe we can save his life – he could breathe and they save his life. The little 2 year old is now 16. Things to be thankful for.

Now I know that each one of us will handle the stress of dealing with this disease differently but the point that I think is so important is our attitude about it. You may get strength through other sources, but I really believe that a positive attitude helps us deal – when I came here for your first meeting I was a little nervous about what I was going to find – what I found was a wonderful group of people who are dealing with the same disease that I am and I found such a beautiful spirit in all of you – such a positive attitude – and what a blessing that is – to be able to help each other through the hard times and laugh together through the good times.

None of us know what tomorrow holds, so why should we waste time worrying about it. I’ve known people who spent their whole life worrying about something that never happened. My grandmother always said if you can laugh you can live and she lived to be in her 90s, had lots of heartache but she never forgot how to laugh. She has been with Jesus for over 30 years and yet I don’t think our family ever gets together that “Granny” doesn’t come up – how we miss her – how she influenced our lives – what a wonderful woman she was – how she made us laugh – how she listened to us – all the many things that helped form who we are – my children never got to know her but they know about her because I talk about her so much. She never worried about tomorrow – she just lived today – she ran toward life and she left a legacy that will live and influence generations to come.

Now, I don’t know where most of you get your strength but I can’t finish this without telling you that I get lots of my strength from God - Two scriptures that are favorites of mine are a tremendous help. I keep them on my refrigerator -

Phil 4:13 - "I can do all things through Christ who strengthens me" - that verse is a real source of strength to me.

Isaiah 40:34 - "But they that wait upon the Lord shall renew their strength - They shall mount up with wings of eagles - they shall run and not be weary - they shall walk and not faint."

A third scripture Malachi 3:3 says: "He will sit as a refiner and purifier of silver." This verse puzzled some women in a Bible study and they wondered what this statement meant about the character and nature of God. One of the women offered to find out the process of refining silver and get back to the group at their next Bible Study.

That week, the woman called a silversmith and made an appointment to watch him at work. She didn't mention anything about the reason for her interest beyond her curiosity about the process of refining silver. As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest so as to burn away all the impurities. The woman thought about God holding us in such a hot spot then she thought again about the verse that says: "He sits as a refiner and purifier of silver." She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver was left a moment too long in the flames, it would be destroyed. The woman was silent for a moment. Then she asked the silversmith, "how do you know when the silver is fully refined?" He smiled at her and answered, "Oh, that's easy - when I see my image in it."

If today we are feeling the heat of the fire, remember that God has His eye on us and will keep watching us until He sees His image in us.

Knowing that God is on my side - no matter what the future holds helps me deal with the stress of the unknown - we all deal with the unknown whether it is from illness or whatever else life has to offer.

There is a little saying that says: "God never promised smooth sailing - but he did promise a successful landing." He promised to be there - it is up to me to believe that he meant it.

I have looked for later information on Sarcoid that I might share today, but I think Dr. Drake has the latest out there. It does seem that there may more than one researcher going with the idea that it does have a specific cause and might be bacterial, so we can just keep hoping for the best. Until then I’m going to RUN TOWARD LIFE!!!

I hope somebody found something helpful in what I have had to say today. I can’t really give you new information on Sarcoidosis that you don’t already know. I do thank you for allowing me to share my thoughts on dealing with Sarcoidosis with you today and thank you Becky for finding me and telling me about this group. I look forward to getting to know each one of you more personally as time goes on, and I know that I am going to love you all. I also want to be helpful in the group – so I’m willing to help do whatever you need me to do that I’m capable of doing.

I don’t have answers on how to heal Sarcoid but I do think I’ve found some answers on how to deal with it – a positive attitude helps more that anything.

Go to: Sarcoidosis Information Information that describes in some detail what is known about Sarcoidosis