Living with Sarcoidosis: Jacki

Here is an interview based on last weeks conversations concerning Sarcoidosis. This interview has been posted on the group Sarcoidosis on Facebook. It is my hope that as we have more and more words you can be more and more empowered as you talk with your medical people. In time we will discover patterns that will be beneficial in both the diagnosis and treatment of sarcosidosis. The interviewer is Carl DeLine, administrator of the group Sarcoidosis and the interviewee is Jacki Cindy Hemmings Parsons

carl   Hello Jacki,

carl   Thank you for sharing with us. It is my hope that as we talk it will prompt others to think of specifics they can share as well. This will be an open forum and is not intended to reveal “personal” information other then what is opinion, concept, or historical information relevant to the words/conversation we are having. Because this is an open group our discussion will be available for all to see. Thank you again.

carl   How long have you been diagnosed with sarcoidosis?

Jacki   Diagnosed in May this year.

Sorry should be last year now. Just over 7 months

carl   Was this diagnosis done in hospital?

Jacki   Yes. Had a CT scan to put my mind at rest as they thought it was just a sinus problem. This showed nodules in lungs and swollen lymph glands. Told it could be cancer or sarc. Had an FNA which was inconclusive so then a gland removed from the supraclavicular region which presented with Sarcoidosis.

carl   What is an FNA?

Jacki   Fine needle aspiration. They go down through the throat, airway or feeding tube to take a biopsy.

carl   At the time of diagnosis, what type of support was discussed with you?

Jacki   None. I went online and found two sites myself. Had never heard of it so needed to find out as much as I could.

carl   Now that you are beginning to understand more, what kind of support do you believe will be helpful? My next question will arise out of your words so say as much as you want here.

Jacki   If my gp knew more it would be useful. Out of 11,000 patients there are 9 of us with it. They are fantastic but I have to feed back to them anything I find out. Local support groups, there was one running in a town about 30 minutes away but it’s since folded as the lady in charge is poorly. There’s one in London once a month but it means travelling by train etc at night after work. Knowing exactly where to look for literature would be good too. My nearest sarc clinic is in London too, my local hospital has no experts .

carl   Thank you, excellent description.

carl   As I listen to the group these are the consistent words I hear.
1. On line,
2. local clinic/hospital,
3. neighbor or client based group,
4. library type resources,
5. some type of way to have medical people hear the story process.

How do you think these group situations would be of benefit to you?

Jacki   I think they would all be beneficial. Whilst the online groups can literally be a lifesaver I do find I while away too much time with them now I have a more up to date phone. I really should get on with other things. A local clinic/hospital would be ideal as travel is obviously tiring. Neighbour or client based group would mean you could set aside that time and speaking with people face to face is sometimes easier. I have met with another lady with sarc who lives across town and her son goes to the school I work at, so we have now other topics to chat about when we meet which is nice. Library resources, I would love as I do like a good read! A way for the medical profession to listen….maybe open meetings with ‘them and us’. I have begun to keep a log-these could be shared and compared. I think at some stage we all feel very alone, I certainly had some very dark days in the beginning but the more I find out the better I am able to cope now.

carl   Thank you, I will now move on to the next thought. How has the willingness of others to share their story benefited you?

Jacki   Enormously! All the ailments that have cropped up over the last 8 years or so are coming together to complete the jigsaw when others bring them up. I gain strength from seeing how others cope and don’t feel so alone.

carl   yes, it is like being in a room full of people and standing there while others talk right by you, and other times as if they walk right through you not knowing you are there.

carl   just a point of clarification. 7 months or 7 years.

Jacki   indeed.

Jacki   7 months diagnosed but I believe from my symptoms it was triggered by my hysterectomy back in Feb 2005.

carl   That is a long gestation period for a diagnosis.

carl   This leads me to the next point of mental health. Others often have a hard time living with our sarcoidosis. Can you share a little on how that “relational ambiguity” may have affected how you survived?

Jacki   Again the putting together of all the pieces-symptoms.

carl   By the way we have almost reached the 1 hour time I asked for. I can continue but want to be sensitive to your time.

Jacki   Not sure if I understand you but here goes.

Jacki   I’m fine for time.

Jacki   Having a diagnosis made everything a lot easier. My husband-who had by now moved out- researched it which enabled him to understand my behaviour etc. My eldest daughter did the same and again this has helped enormously. Another daughter will listen to everything I tell her and we can have some dark humour about it all. My son and youngest daughter(16) don’t really want to discuss it. I am much calmer now I know what is wrong with me and that I need to take things easier which means all my relationships are improving. Is that the kind of thing you mean?

carl   Right on. I believe/hope that as this group grows and develops it may empower people/families to understand that this “junk” is real and has tentacles into many facets of our lives.

Jacki   Oh my goodness it certainly does!

carl   The next question has to do with diet/food.
carl   How have you adjusted your eating patterns because of this?

Jacki   Ah now that is a good one. I had begun to replace some meals with veg and fruit juice not only lose weight but for general health as am very overweight. However, the sarc doc I saw recently who started me on steroids emphatically told me not to do this. Even though it’s almost a given that I will develop diabetes now. Unfortunately over Christmas all good intentions went by the wayside but again now portion sizes are smaller and I will be juicing because it makes me feel better. I am cutting down on wheat and dairy too because this does make a difference. I just have to lose weight as my daughter gets married in September this year and as I did nothing much more last year than sleep I didn’t manage to lose much then.

carl   I am sure the whole group will say- we understand. LOL

Jacki   haha oh yes.

carl   As I look at the remaining words I see that we have touched on most of them. I think I will stop here and give time for us as a group to ponder your GREAT input. I will now cut and paste this discussion, dress it up a little, send it back to you for approval and then post it for discussion. Can you share your email address with me and I will send a final copy to you. Thank you again for sharing. This will be a great start for us.

Jacki   It’s a pleasure, anytime. I truly believe that the more we know about this disease the better we are at coping with it.

carl   To re-say the introduction, Thank you for sharing with us. It is my hope that as we talk it will prompt others to think of specifics they can share as well. This will be an open forum and is not intended to reveal “personal” information other then what is opinion, concept, or historical information relevant to the words/conversation we are having. Because this is an open group our discussion, your comments, will be available for all to see. Your returned email to me is what will be posted. Do I have your permission to post this?* Thank you again.

* Because Facebook claims ownership of everything on their site (with your permission) I will also post this on my personal blogsite. This will guarantee the integrity of the whole interview as approved.

Carl DeLine

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