This is a conversation I had with a NEW friend from Australia. She accepted me into a group from Australia that discusses the disease Sarcoidosis. It happened within the last 20 hours.
J- Welcome Carl
C- Hi Janise- thank you for your kind words.
J- This is a very supportive group.
C- i am enjoying researching and talking with people. I love my Australian friends
J- We have a wealth of knowledge between us and we need to share
C- I am developing a 12 days of Christmas sharing that will start and develop around what we want the special people in ours lives to know about sarcoidosis.
J- So what does that entail Carl ? I am curious, although i am not feeling to Christmassy this year having only just come to terms with our diagnosis’s
C- I am in the process of writing the introduction to that as we talk. I will post that introduction in a couple of minutes.
J- Ok no problem I will be back in a minute just supervising my son getting his sausages off the griller. lol risky he is probably feeding them to the dogs !!
J- what time is it over there here is is almost 8 pm and way past dinner time but better late than never !
C- It is 5:42 a.m.
J- OMG ! Ok and it is probably cold there ? Here it is summer time and we are in for a scorcher of a week almost 40 degrees and could well hit that on sunday !
C- We are not that far apart. -30 in the morning and we will warm up to about 3 or 4
J- here is the intro. does it make sense to you?
C- We are 13 days away from celebrating one of the greatest holidays of all time. It is a time to celebrate a gift of life that overcomes, a gift of life that does not dwell on the oppressions of life but on the hopes and expectations in life. It is a time to understand that out of the darkest moments comes a glimmer of light that encourages us to move toward greater light. This is not a celebration about brokenness. It is a celebration of how in the midst of a dying world one new life has made the difference. A few weeks ago I asked you to think about things you wanted to talk about. As I scanned your words and the words of people from other groups one immediate desire kept coming up. The desire was to help others understand . With that in mind I have followed various threads of thought. As I kept these thoughts in mind I found myself becoming stronger. In the next few days I hope we can share in a journey that illuminates what sarcoidosis is and how we live with it on a daily basis even though we may “not look sick.” Please identify a person you want to share this journey with, ask them to follow our collective posts and then talk together with you about it.
J- Sounds good Carl, so a wee bit cold over there is it ?
C- no this is warm. last week it was cold. lol
J- OMG !! i can’t even imagine it ! Excuse my ignorance what exactly is Sarcoidosis Carl. Myself and my now adult children have just been diagnosed with an assortment of Lyme related diagnosis 25 years post tick biters. I have joined as many sites as possible as i need to learn about what we have and absorb it has been a bit mind blowing to say the least !
C- one of the things that will come out in the next days is the “mass” confusion about what sarcoid is. The many experts add to this confusion as each expert speaks as if they have the final word.
C- sarcoid manifests itself in multiple ways and has unfortunately become a catch all term for many. the problem with this process is that the diagnosis then gets minimized, things get worse and massive amounts of steroids become the “quick fix”
J- I just googled it so is it connected/triggered by Lyme or just made worse by Lyme Carl ?
C- the quick fix doesn’t happen and then the solution begins to add a whole series of new symptoms
J- not sure what you mean ?
C- mine never had lyme even mentioned with it
C- mine apparently started in my blood
C- then went to my eyes
C- then to my lungs
C- in each case each symptom was treated
C- as things got worse sarcoidosis eventually was identified
C- treating sarcoid didn’t happen until after blood treatments, eye treatments failed
by the time the lungs were treated 70% of both lungs had been affected
C- sorry – did I lose you?
J- No I think I understand now as in no doctor ever looked at you as a whole person just bits of you and treated that ‘bit’ according to his/her area of expertise and never mind the collaterol damage it caused. Is that what you mean ?
C- yes, and what wonderful words. I hope you share those with the group as this discussion evolves. I really like how you said that.
J- Thank you Carl after what seems a lifetime of trying to get Doctors to look at both of my children as whole beings. wouldn’t it have been lovely for a doctor to step back and say “Ok now lets look at the big picture, why is this and this and this happening and what correlation do they have with one and other . It has taken a while but at last we have a lovely Lyme doctor who is doing just that and “God bless his Little Cotton Socks” ! At last !! I wish the same for us all !
C- amen sister preach it. please carry this intensity into the sarcoid group. we have a wonderful group of people who often struggle with not so much what to say but how to say it.
C- would you mind if I enter this conversation onto my blog. http://carldeline.com/sarcoidosis
J- That’s fine Carl no problem at all.
C- thank you. and please take a hug and pass one on.
J- Thanks Carl and one for you also. stay safe and stay well and keep fighting and never ever give up !! nite
I HAVE ENTITLED THIS BLOG ENTRY and so, an evening, a morning, a new day
The longer I live I discover more people who are living with some form of terminal illness. I hear people say, “I would just rather die. Why can’t I?” Damage is done not only to the individuals but also to the families that want to be supportive to those who are living with dying. Patients suffer guilt over the cost of time and money that doesn’t produce the miracle cure, families suffer with guilt and anger about not being able to wave that magic wand and see healing happen. Stress in relationships grow to breaking points. In the next days you are invited to join in this discussion. Sarcoidosis is only one of many diseases that has an unknown origin and an often unpredictable path of destruction. Please take the time to share your input while inviting a friend or family member to join with you at https://www.facebook.com/groups/22602590155/