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Deborah, Ramona, & Lisa are gifts from above (Read 1211 times)
nelson1600
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Melissa, TX
Deborah, Ramona, & Lisa are gifts from above
05/17/11 at 09:46:18
 
I came to this site almost a year ago (ok, the old site, but you know what I mean)...  I was nervous, scared, and thought that I was about to experience an ultimate low in my life after receiving word from my allergist that he feared I had SM after experiencing symptoms that lead him to perform a test that included a tryptase level.

Like many I began to search for answers online that would help me figure out / understand the possibilities that could lay ahead if my Dr. was correct in his assumption.

Upon finding the forum; Deborah, Ramona, and Lisa alike each made me feel immediately accepted and along with other members promptly aided in answering each and every question that I had.

As a business owner and stay at home dad I slowly realized that I was becoming obsessed with the disease and found that I possessed a desire to understand it.  Over the last few months I have realized that "understanding" SM is almost as likely as discovering a working model for perpetual motion.

It has been some time since I have posted or contacted members of the forum and for that I GREATLY APOLOGIZE.  Especially to Ramona and Lisa;  I feel like in an effort to understand the disease that I was inadvertently allowing it to take over every free minute of my life.  At the end of it all I felt that I "HAD" to take a huge step back and reclaim my life by redirecting my attention.  Don't get me wrong, I never forgot about anyone here; for lack of a better example, I had to get over my SM to get on with my life.

I had a 2nd BMB completed in January of this year and thanks to Deborah, Dr. Akin was able to review my slides in Boston (He was great, communicated via email, and only asked that if my condition worsened or treatment was failing that I would try to follow up with him in person at the clinic in Boston).  So my results were a little odd; where my Dr.'s in Texas stated I did not have the disease and only acknowledged that there were some "suspicious" cells that showed up in my BMB; Dr. Akin explained that it appeared based on an exam of all of my slides and labs that I had a "limited" form of the disease that may or may not ever worsen.

So time has gone on; I am learning my triggers, I seem to react at my worst on days when the pollen count is up, as well as to heat, and insect bites (oh and alcohol, I'm not a big drinker but I had a few drinks with my brother one night last month and OMG).  I feel lucky because mine is unfortunately not the case for so many others.  I do have stomach related issues that are odd; one day I can eat anything without issue and the next day I can repeat the same menu and end up sick as a dog.

Anyway, the point that this long winded rambling is supposed to make is that even though I had to take a huge step back for personal sake, I hope that Deborah, Ramona, and Lisa each know that I am forever in their debt.

Over the last several months I have focused on the launch of a couple of new projects that will hopefully become successful ventures and have learned how to manage my symptoms for the most part.  I still have attacks and encounter times when I feel like I am about to just black out.  I think out of it all the fatigue is the only thing that still makes no sense to me; some of you probably know exactly what I'm talking about; you feel like a $100 bill one second and the next second you feel like you just can't function anymore.

The three of you are more like "Guardian Angels" than anything else and I hope that after all of this time of silence that I am still an "accepted" member of the forum, as I gain more of an understanding of my ailment I would like to continue to be an active site member.


~Lucas
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Doctor's are glorified auto mechanics of the human body; make sure you find one that you trust...
 
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Riverwn
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Gainesville, Florida
Re: Deborah, Ramona, & Lisa are gifts from above
Reply #1 - 05/17/11 at 09:57:59
 
Hellooo Lucas!!
Of course, youre accepted here and its thrilling to hear from you! Hey, EVERYONE needs a time period to back away and remember who they were before the masto--and that they are STILL that person.  Every now and then you wont see me here for about 3 days because I am taking a disorder free vacation--as long as I stay on my meds Smiley

There are so many different categories of mast cell disorders and we are similar but not the same. That means that we must remember to take our meds, NOT overwork, see our fatigue as a warning and take it easy for a few days and there are people who will NEVER worsen in their masto. Even those who do, will find it is slower and easier to handle if they remember to take care of themselves.

Lucas, you are an easy person to help. You listen to advice and you took it! I am so thrilled to know there are times for you that you can forget all about this (and take your meds of course).  YOU are the biggest reason for your success and Im so glad that Dr Akin saw you to put it all in order Smiley

Keep in touch!
love
Ramona
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~~~Count  Your Blessings!~~~
 
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