slhaas
CH.com Veteran
 
Offline
Posts: 181
West Allis, WI, USA
Gender:
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Hey everyone,
I've been an on/off type visitor to clusterheadaches.com for years. I don't know if any of you remember me or not. I guess I'm kind of typical in that regard in my showing up when I'm hurting and dropping off when I'm not. I check back from time to time to read some posts and offer suggestions here and there when I'm off cycle, but a simple check of my history here shows me I'm really only active during cycles. It's tough with the daily grind of life to keep up with such things, and when you're PF it's not always something you want to think about.
I came here originally in the midst of a bad cycle with little income and a doctor that was fighting me at every step. I didn't have anywhere to turn, and found this site. It truly changed my life. I found people dealing with the same issues, a ton of suggestions, and often just moral support that made all the difference in the world. Things got worse before they got better because I lost my job, had no insurance, and entered into a monster cycle about a year later. Again, this board was salvation. The moral support and suggestions turned into personal assistance, help with getting medicine/oxygen and even a clustermasx. People stumbled over one another to offer me kind words, advice and help as best they could, and I'll never forget it.
I again turned away when things got better and made only my token stops here and there. Since then my life has improved on all fronts. I've gotten a great job and started to pull myself out of debt. I have good insurance and a great doctor, and a wonderful supporter at home; though I try to insulate her from this beast as much as I possibly can. Though it's not the best of times for any of us in the US with our economy, job losses, etc., I look back and compare where I was 2-3 years ago, and am so very thankful to be where I am now. A lot of that came from the support starting right here that helped me live with this and start my life over instead of dreading each day and shutting down for months at a time during a cycle.
I realized that I should pay some of this back, and started visiting more frequently even though I am under control. The first thing I noticed was how I've missed out on all of these meet & greets and conferences. One was in my own back yard. What a waste. I found that even when I'm not seeking advice or support that the people here are truly some of the kindest I've ever met. I went to see Brew & Brew Jr.'s band and we talked about possibly getting a Wisconsin area meet going, all from a simple interest check post, and again, they couldn't have been friendlier (and Chapter 2 was awesome - Sorry I didn't see the other band).
I can't promise that I'll be the most active member here as I tend to get side tracked a lot in life, but a recent tough cycle is proof that I'll always have a reminder to help out here. I can promise that I'd like to try to be a bigger part of this community and help as many people as I can. I don't know exactly when or how I'll do this, but I'm going to keep the door open.
I've become somewhat of an expert as to how CHs work with employment, FMLA leave, ADA protection, short term disability, etc. I've even found a few people locally that will deal on O2 outside of your insurance as long as you bring the tanks in for refills (medical grade). I've tried just about every herbal/natural remedy there is for this with varying degrees of success including some of the not-so-legal offerings. I can offer assistance in those areas, local support if possible, and even just a person to vent to if that will help. If I ever strike it rich I'll pump a bunch of money into the cause, this site, OUCH, etc., but until then I guess you'll just have to make do with my moral support.
Besides the Brew/Brew Jr. for their show and Brew's recent help in trying to arrange a local meet, I'd also like to thank Chopmyheadoff, Guiseppi, BobW/Bobwold and Melissa (the last two apparently being ex-members now) for their help in the past.
I'd especially like to single out and thank Kcopelin, Ben_uk, Bikerbob for their remarkable help over those years.
Well enough sap, but thanks again to everyone for being here, and please let me know if you need anything!
Steve
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