This week I have been predominantly annoyed by my computer. Whenever I want to do anything remotely lengthy on the computer (like write this blog!!!) it freezes, crashes or just decides to get in a strop with me. I am beginning to see the advantages of switching to an Apple device….But this blog is not about my incapapilites of dealing with the lovely techonological world so let’s change the subject.

These last few days I have been directly contacting women who I see actively participating with comments in the ISS group. I am very curious whether I would get open and honest answers. I am interested in people’s stories and experiences and asked to be allowed to use them in my blog. And I am interested in their feelings and there ways of dealing with things.
I won’t do much typing here. I want to pass on what I have been told (thank you ladies for your openness). I wil also be writing about those who support loved ones with ISS, but each in their own time (and inspirational mood).

One story of many that keeps sticking in my mind since hearing it on Tuesday is this, I just had to put this one out first:

I don’t know how exactly I got ISS or when it started. I have theories, but that is all. It might have been hormones or a past outpatient surgery. When I started wheezing I was misdiagnosed with asthma. I was treated for asthma for about 6 years. The meds never worked and the doctor yelled at me for stopping my meds since “they never worked.” They told me I cause scar tissue damage that couldn’t be reversed.
My condition got much worse with my pregnancies and, I was so bad this past fall, I prepared to die. I didn’t know what was going on. I just knew nobody could help my horrible “asthma”, I lacked energy-I could hardly do anything, I lost 20 pounds and felt horrible all around. I researched asthma and COPD day and night hoping something out there could help me.
I met a friend who finally cared enough to try and help me. All of my other friends learned to ignore my horrible wheezing, coughing and phlegm. Two of my best friends are nurses and didn’t even take this seriously! My friend and I researched together, trying different asthma drugs and naturally remedies. Finally, I said that I just don’t think I have asthma at all. It had to be COPD or maybe some other horrible illness like cystic fibrosis.
I prayed and prayed for God to send me to a doctor who would listen to me and take me seriously. All the other doctors just told me it was severe asthma. I finally went to a doctor who had a brain and told me he didn’t think I had asthma either and that my problem was in my neck area. The way things unfolded were amazing after that considering I had this condition for maybe 10-15 years so far with no correct diagnosis. He sent me to a Specialist who correctly diagnosed me. A week later I got a bad cold and my phlegm became hard and got stuck in my throat and I couldn’t breath. It was one of the worst weekends of my life. I was fighting for every breath and to stay alive. They needed to do emergency surgery on me. After 10-15 years, I got diagnosed in the nick of time!
As far as my friends and family, I guess I feel VERY unsupported. Since this ailment is a breathing issue and not as apparent as something else, people tend to forget I’m dealing with anything and expect a lot out of me and seem to not care about it.

My heart goes out to her, like to everyone suffering with this illness, be it that I know the story or not.

2 thoughts on “Stories

  1. spinningman101

    As I read this, I was getting a strong sense of ….. not panic, neccessarily but maybe despair that must go through the mind of whoever suffers from this, prior to correct diagnosis.

  2. Gillian

    Thankfully I have had a lot of support, I was diagnosed very quickly as I work in a small hospital and the staff there told the Drs it was not asthma + pushed for my referral. My family + close friends are very supportive however as Im quite blase about things I dont think others fully understand what Im going through + I think people will bé surprised when they hear that I amb having major surgery in July


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