Unpredictable Seasonal Cycles With Mastocytosis

Dear Gang, I just thought I would share what's been happening and see if anyone else has noticed anything similar.
Being that this is my second year since diagnosis I am seeing obvious cycles with this illness from last year to this and there doesn't seem to be anything I can do to break it! As I mentioned in Mel's discussion just now, I was doing very well in August and early September, I didn't really change much other than I was finally able to do very gentle workouts slowly but surely and each week I felt better and better with less symptoms and I increased the workouts little by little and began to see the old me coming back in the mirror which was nice. I talked myself into believing this was all my doing, watching what I was eating, little workouts, staying incredibly positive, avoiding stress and the people who cause it.... so I was on cloud nine up until Friday when everything unraveled and I can't for the life of me figure out why other than this follows the exact pattern of last year! Each month from last year to this year was identical no matter what I did.

Thursday night the lymph nodes in my neck began to swell and ache which is new for me and my ultra sound showed a lymph node enlarged around my liver a month ago... coincidence?? Friday I was scheduled to take my first trip alone since this all began, to Toronto for the big film festival and shmooze fest!! I was so excited to go and to travel again like a big girl all by myself!! LOL Then I awoke Friday and all my joints felt inflamed, bruised and very stiff. I could hardly move I was in so much pain and my gastro cramps were acting up too and I just shook my head...I was going no where fast!! There was no way I could have packed and even carried my suit case never mind hauling myself to the airport and do all that needed to be done... but the lymph nodes were concerning me. I had my GP come to the house and what an exercise in futility that was!!! I really wonder how some people managed to graduate from medical school....did I say that out loud??
He confirmed they were enlarged... duh.... and said I most likely had a viral infection.... I explained I had no symptoms of a cold/flu/ear infection etc.... and was concerned it had something to do with my masto.... he accused me of being incredibly negative and I've lost my care-free attitude of years gone by and I'm letting the illness win.... OMG!! That was just because I didn't agree with his invisible virus diagnosis!! And further more I never get colds or the flu anymore!! So that was frustrating to say the least!! All that for a wompin $100! I won't do that ever again!!

And the funny thing is, I sent this amazingly positive email to my masto doc who must think I have multiple personality disorder by now!! LOL I went on and on about how great I feel and I was giving this illness no power, I was living my life no matter what and doing what needs to get done.....yeah... that sounded really good on paper on Thursday but then Friday came... I don't even want to email him my latest update, it's embarrassing how quickly everything went down the drain on me and I can't make any sense of it!! I even tried Reiki for the first time last night, I heard amazing things about it and considering I actually do it to other people you think I would have tried this a long time ago but.... I did last night and nothing.... NOTHING!! I hear amazing things from those I do it to and I actually felt worse when I left!! How is that even possible??

I meant to post a discussion last week and the power of positive thinking and how it helped me so much and I guess I was too busy feeling fabulous and that brings me to the present.....
Does anyone else notice a seasonal or month to month cycle? I have noticed that several people on here complain of worsening symptoms at the same time or say they feel great at the same time, I find this interesting. Maybe it's the lunar cycle..... as long as we don't all grow hair and howl at the moon at the same time.... sorry.... kidding!!! haha
So here we are in September, this time last year I was steadily going down hill and October was the absolute worst month of the year!! I stayed in bed in agony for a month!! God I hope I can somehow head this off at the pass.
So if anyone else has noticed anything similar I'd love to hear from you, not sure what this will accomplish but always trying to find a rhyme or reason to this and a way to change it!!
I am sending out healing hugs to everyone and hoping you all are feeling better!! And to Mel, wishing your gastro flare calms down!
All the best,
Leslie

By Megdalina
Posted September 13, 2009 at 8:13 pm
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Poetessa hope you are feeling better already. All these autoimmune things are seasonal but the season can be different for each person. There is a grinch out there I am convinced because as sure as I brag about feeling great I get knocked back on my keester! hugs and prayers

By paldotty
Posted September 14, 2009 at 9:37 am
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Poetessa, sorry to hear you're having a rough time...but these things ARE seasonal. I live in Wales, whinge in the winter when there's constant rain, but only seem to have seizures when the temperature gets above 15 degrees...I still feel cold, but have noticed this cycle over the past 7 years, that I HAVE to keep out of the sun (I have cerebral vasculitis), and haven,t been down my local beach in what seems aeons! Hope you are feeling better...and as for travelling anywhere...that's a big NO for me!...Keep on in there...

By SM_30
Posted September 14, 2009 at 9:57 am
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Poetessa, I hear you on the seasonal cycle. I've only had bad rashes several times and it's always during the same time year and almost the same month. I think for me it's the new exposure to the sun...getting out of the gray dreary winter.

Anywho, I am a true believer in positive thinking. Just because you had a flair doesn't mean you can't kick this diseases ars! I know this sounds a little like I'm in denial, especially because now they aren't sure I even have SM, but either way I've got something! But anyway...one day about a year ago I just stopped talking about how bad I feel and wouldn't you know it, I started feeling better. I just took a mental break from being sick and it helped get the old me back. Now, I am still the old me...but with modifications. I used to cry everyday and I just said to h#ll with that! I have power over my body. I was well at one point in my life, and I can be well again.

Now I do want to make a special comment about what I just wrote. I, in no way, believe that someone's thinking and attitude can make their illness go away...I mean for gosh sakes, we all have biological dysfunctions/mutations and there is no way have a certain kind of thought can make you ALL better. Though positive thought has a lot of power, just not the power to fix our mast cells from being nutty!!! :)

Any other thoughts on positive thinking? It's hard to think positive when you're laying on the bathroom floor for hours. :) All in your sense of humor I guess.

By Poetessa
Posted September 14, 2009 at 5:43 pm
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Hi Gang! So nice to hear from everyone, I am still trying to remain very positive but things are getting worse, I guess we must really value our good times and just ride through the bad times like troopers, I had terrible gastro pain last night, serves me right for having toast!! haha
Right now I'm flushing like a maniac, taking meds and praying I don't have to go to the hospital and of course my bones all feel like someone took a baseball bat to me but aside from that I am ready to go out dancing... who's with me??
And positive thinking is key, I don't know that it can cure someone but it certainly can make a difference and that's why I true to stay up and positive even when I'm feeling like this!!
Just curious if others felt the cycle, I am wondering if people who live in parts of the world that don't have the 4 seasons feel the same cycles... I might have to move!! Here the weather is starting to change to fall which is gorgeous but hell on me!! I have so much to do and how will I do it feeling like this??? Aaaarrgghh!!
The next time I'm feeling great I am keeping my big fat trap shut and not jinxing myself!!!
By the way, I hope the pregnancy is going well SM30!!
And I hope you get a diagnosis soon, I know it can be tricky with meds and treating the symptoms with a baby on the way. Get lots of rest and don't push yourself!!
Thanks to everyone for the words of support!!
Love and light,
Poetessa Les

By Cocoapuff68
Posted September 14, 2009 at 9:49 pm
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I hear you on the dancing part! I was the matron of honor at my best friends wedding this weekend and I had a blast but paid for it on Sunday morning...Hip joint pain so severe I could barely walk or stand up. I was so sad that I couldn't even have just one drink with them! I have blue veins coming from everywhere and they are dark?? this is all new to me.. I hope you are feeling better but I notice that all my things happen in the Spring every year, just this year was the most severe ..hence diagnosis that I didn't have in the prior years..I'm thinking of you and I hope you can catch my big warm and fuzzy hug!! hee hee..

By Poetessa
Posted September 15, 2009 at 12:33 am
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I am so happy you were able to make it to the wedding, it does really suck that we can't drink but you just have to be yourself and watch everyone else make fools of themselves and we get no hang overs... even though I usually feel like I have a hangover without the fun the night before!! That's not fair!! haha
Spring is actually good for me, last year fall was horrible, especially October!! I am not looking forward to it if it's like last year, I didn't get out of bed hardly for the whole month!! But I am remaining positive and hoping this year will be easier on me!! I know about joint pain... uuurrgghh!! Two mornings ago both my elbows were swollen and aching and my wrists and hands... that was fun, I have no idea why!! I don't remember doing gymnastics the night before!!

Keep your spirits up and wishing you pain free days and sleep filled nights!!
Sending warm fuzzy hugs back!
Leslie

By CSIII
Posted October 8, 2009 at 4:36 am
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It's an interesting observation about seasonal triggers. Living in an area that does not have extreme seasons, Southern California, I find that the worst times I have had seem to be associated with heat. We do get pretty warm here in the summer, sometimes 110+. The other trigger I seem to have is stress. When I am having a bad time it seems, looking back, to have been a stressful time. It may not seem to be particularly stressful at the time, but hind sight is 20/20. This seems to have hit me later in life than many of you. I was almost 61 when the diagnosis was confirmed. My best to all. Dale

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