The Curse of Kimbangu- A Scotsman's tale....

[coffeelover]

Hello and welcome Kimbangu!

I too had what I called "traveling pains" that would come and go with not cause or effect. Many times, I felt that I could tell when the weather was changing prior to the meterologists that are typically not correct in their assessment. It got to the point where my husband would ask me how I was feeling so he knew what to bring in the car with him on his sales calls for that day. (eg-umbrella, snow pants etc)
I had always had sinus issues, but did not get any REAL help until my tracheal stenosis became an issue. Even after passing out numerous times, I was just "wishing" it away, but eventually smartened up and went to get ENT help. He in turn threw me into surgery to open my airway and did some WEG testing.
That anxiety you talked about came for me too when the ENT was Testing me for WEGS. Because all the online "stuff" you find regarding this disease makes it seem so scarey. Unfortunately, my ENT is not a WEGS specialist and his testing proved inconclusive to WEGS and so I convinced myself that it was not what I had...UNTIL I went to see my rheumy who was treating me with malaria pills for a disease she called palendromic rheumatism. She noticed my trach and decided to do further testing in which the results were....... that I get to be a part of this forum and wonderful group of people.
I too try to stay away from Stress...quite difficult as I have 3 children in college and a job that deals with people on a regular basis and sometimes too much family. (did I say that?)

On a side note....I am most impressed with you people that have traveled. Sangye, 20 years in the Peace Corp! Commendable!
Kimbangu-Africa...WOW!
Jack Italy---beautiful!
Katwoman-South Africa-awesome!

I am out of adjectives, but equally impressed with everyone on this support group. Just the roads we all have traveled with this disease is adventure enough and I am proud of all of you. Your journeys inspire and encourage the rest of us.
coffeelover

[Sangye]

Sangye, 20 years in the Peace Corp!

It was just 2 yrs in the Peace Corps (20+ years ago)! But it was one of the best things I've ever done. I also lived in Spain for 3 years and taught school in the early 90's.

Maybe that's why my Wegs joint pain stopped being so migratory after 3 months-- it was all traveled out....

[katwoman]

[QUOTE=coffeelover;7874]

Katwoman-South Africa-awesome!

It's a great hobby (but expensive) and opens your eyes to a big wide world out there! I've been to places and seen things around the world that is shocking/sad but also amazing/breathtaking but most of all it makes me appreciate where I live and what I have...with or without WG!!

[Doug]

[QUOTE=katwoman;7886]

Katwoman-South Africa-awesome!

It's a great hobby (but expensive) and opens your eyes to a big wide world out there! I've been to places and seen things around the world that is shocking/sad but also amazing/breathtaking but most of all it makes me appreciate where I live and what I have...with or without WG!!

I have to agree with you. The devil you know, you know!

[Kimbangu]

Looking back, there's a strange aspect to the "denial" part of it all. We live and learn.

[katwoman]

Yet I was trying to "laugh it off" , mainly because the symptoms were so weird- I even gave it a nickname - "the Curse of Kimbangu"... as though it was just some African thing that would go away of it's own accord. We live and learn.

Laughing it off was my usual way of dealing with things, I remember my mum getting so upset and saying to me in hospital 'this isn't a joke' - I knew she was right but that is just the way I could cope with things, it seemed more logical then crumbling into a heap.

[elephant]

Laughing releases stress, so it is very appropriate for us to laugh when were going through hell.

[Sangye]

I laugh at the whole mess, too. Why not? You can laugh at it and still do what's necessary-- take drugs, follow dr directions, etc.... I think it 's funny that others put their judgments and "stuff" on sick people. They want us to "take it seriously" yet they also think it's "inspirational" when we can laugh through our troubles. Bleh to them.

[Sangye]

The elevated intracranial pressure condition I have is called Pseudotumor Cerebri. That literally means "Fake Brain Tumor." It almost killed me when it began, almost blinded me completely within one day. So it's a serious condition. If I thought about it all the time, I'd never come out from under my covers. So I never refer to it as Pseudotumor. I always call it "My Fake Brain Tumor."

Pred is one of the causes of it, and when I had to go back on pred this summer it was pretty scary. My JHU docs took it quite seriously and said, "We're going to get clearance from the JHU Pseudotumor Team." I almost split my sides laughing. "The TEAM? Is it a FAKE brain tumor TEAM or a FAKE BRAIN TUMOR team?" It still cracks me up. None of them even chuckled. I guess the blood I was coughing up while laughing made it hard for them to find the humor....

[pberggren1]

Hi Sangye:

I have been to Spain twice. Where exactly did you live in Spain?

Over and Out,
Phil of the north