Ok so I am stuck in this panic, can't get up and have whatever life I got, Syndrome! I know that I can get up and do even small things but I seem to be in this spot where all I want is my truck and my radio blaring! Saturday night I grabbed my friend Liz and said bye guys you got the kids, took dvd recorder and the camera and off we went. I recorded our drive all the way to a towing shop in our area and took pics of me on the trucks, drove to our other friends house to jump on her porch get pics and run lol found it quite Ironic that they where all out in the front yard ..we couldn't stop laughing because we got busted before we began..Stayed for a few minutes laughing at ourselves..Took off from their and went all over the city of lowell taking pictures on the police station sign...in front of the station..was stopping in traffic throwing on emergency flashers, and taking random pictures everywhere lol ...I think I lost my mind this weekend ? Can I blame the Masto's for that lol !!!
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Mastocytosis / MCAD
- By Cocoapuff68
- Posted September 25, 2009 at 8:54 am · 8 replies
- In How my disease has changed my life
- Shared with the public
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- By Poetessa
- Posted September 28, 2009 at 6:30 pm
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Yes!! Absolutely!! Blame it on the masto!! haha
It sounds like you needed to have some fun and let your hair down!! Good for you!!!
I am so happy to hear that you are having some fun!!!
Wonderful to hear!! Cherish the days when you feel good and get out there and have some fun!! That's what I try to do and when I am feeling like total crud I can plan for the next spot when I'm feeling better!!
And laughter is such a great remedy for whatever ails you! If you can laugh that gets right in the fibers and makes us feel great!!!
Wishing you continued good days and tons of laughter and love!!
Leslie
- By Cocoapuff68
- Posted September 28, 2009 at 11:36 pm
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Well I went to Boston on thursday and she told me my histamine was in the range but my prostiglandin D was 585..she said that was high? I have no idea what the range of normal should be....but I now have to take 4 to 6 oscal a day oh my lord this is getting expensive argg..How you are doing great!!
- By Poetessa
- Posted September 29, 2009 at 4:39 am
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I never even heard about that level!! So I can't help you by comparing mine! She never told you what normal was? uuurggghh
And I haven't heard of oscal, what is that and why?
I know it's an expensive proposition to be sick!!
My masto is up and down lately but my head is a bit better. I almost posted something about 4 days ago but it was so bloody depressing I figured that it wouldn't do much good for anyone else... hence the name "Team Inspire"!!! I had some nasty sobbing fits which seem to come and go and I don't know why! Last winter they were nightly for a couple of months and even a few times a day but they only started up about a week ago... part of the masto? Life? Being in pain? Never making plans for fear of canceling them? Being alone? All of the above?
But I feel like a new person now, I have some nice changes coming up and I am being so positive and upbeat!!! What a yo yo I am, no wonder everyone thinks I'm nuts!!! She's UP then she's down, then UP..... down again!! So tired of that!!! LOL
How are you feeling? I think driving with the stereo blaring is amazing therapy by the way!! You go girlfriend!!!
Healing Hugs!!
Leslie
- By ilovevt
- Posted September 29, 2009 at 7:44 am
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questions for anyone who may know. i have been diagnosed with masto...had it for 7 months just started having symptoms got lucky and diagnosed right off...does anyone know how this disease progresses? i have lots of symptoms but feel lucky not to have pain. is that what is coming next????
- By Cocoapuff68
- Posted September 29, 2009 at 8:08 am
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poetessa, the os-cal is just calcium with vitamin d, nothing special just they end up adding up on my end I have kids and we don't have that kinda extra ya know. You should have posted anything you where feeling, whether it was a hysterical crying rampage or not! HENCE team Inspire... lol ..That is what this disease does lots of tears for most of us usually more in the AM and late nights. Sobbing fits come with this due to whatever chemicals are high in our body at the time. Think about hormones and how they affect us. The high prostoglandin thing can effect a bunch but seems sleep and the brain fog part as far as I can figure out from reading and the DR... you been listening to Katie perry (up then your down hee hee) well I hope you are feeling better today ..sending you big Cocoapuff hugs! :)
- By Cocoapuff68
- Posted September 29, 2009 at 8:12 am
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Hi I lovevt, first question ? Are you actually in VT? because I trying to get idea of if the rumors are true about this becoming an increasing diagnosis in the New England area? As for symptoms, they range in everyone! Did you have a bone marrow biopsy yet? Do they know which Masto you have? and what do you have going on right now?
- By CSIII
- Posted September 30, 2009 at 2:36 am
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Hello All, What a great evening Cocoapuff had! It must have felt great to let your hair down and howl at the moon. I haven't done anything like that since I don't remember when. I miss it. It has been months since I've been out of our valley except to go to a doctor at UCLA. Nothing against our valley, but there is so much out there I would love to do. Can't seem to get it done, always afraid of what might happen if I have a serious attack and can't get help quickly enough. I'm not relating this to scare you, ilovevt. You are so fortunate having been diagnosed so quickly. What have your symptoms been? Personally I am a gastro shocker. Other that that, just the normal bone pain and swollen feet that seems to affect many of us. Don't be a stranger. We all seem to learn from each other. And Leslie, so you had a bad day, we've all had them. Don't hesitate to let it all out. No one understands better than us. Good, bad, or indifferent we all need to share and sometimes vent. Vent on us and we will scream right along with you. You are not alone. We're all in this together. My best to all. Dale
- By Cocoapuff68
- Posted September 30, 2009 at 8:58 am
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Dale you are so sweet! I love you poetessa and miss your chatting where are you!
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