I spend most of my time at appointments but, when I am not at the doctor's offices I sit here in front of this world of technology. I read and read, and still all I look for are related to histamine and prostiglandins arg..I love pizza and spaghetti with meatballs, not anymore. I would like my life back, I would like to sleep without worrying and waking up not breathing. I thought I was a strong person before, well I never knew how strong someone had to be to handle something like this. I can't turn the heat on right now for fear of dust which will cause me to have life threatening reactions, what am I going to do? I need to go out with my husband have a corona with lime and just have fun..that can never happen either. Life is so short enough to begin with and I don't think I can stress enough to everyone..Live a good life one that has so much fun in it.. while you can, Live a life not being a token in any game, keep your loved ones as close as you can for as long as you can. Don't sleep with people you don't love..fight with every breath for your kids and keep them safe and secure. When you find love keep it and hold it with both hands..never let it go.
Don't take your health for granted there are things that come out of nowhere, so do your best with that one! Once your health has failed you all these things are true..I know there are more and they will come as I go but, this is just me telling you how this makes meaning in your life change...You don't worry about what you are going to be wearing out on Saturday night..no longer do you worry about how old you look these things are not of any value..you worry about your family and friends..about where your getting the money to cover all the medications that aren't covered or if you pay the cable bill. I know that people who haven't been affected with these kind of things have no idea how to understand this yet but, If it happened tomorrow you would be probably be adding to this..
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Mastocytosis changed everything
- By Cocoapuff68
- Posted September 30, 2009 at 11:12 pm · 5 replies
- In How my disease has changed my life
- Shared with the public
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- By Poetessa
- Posted October 1, 2009 at 5:06 pm
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You have an incredible way of making me cry my dear because what you write is so true and hits home so much for me... as I sit here and mop up I reflect on how mastocytosis has affected my life, what it took from me, how it changed me and what it gave me....
It took a lot of my freedom from me, I am fearful about running around alone now, especially to travel... the old what if something happens routine! And I just feel crappy so much of the time!!! A prisoner in my own body when I am feeling too sick to go out.
It took my ability to work in the film business away which is one of my great passions, now I wonder how I will find a new career at my age with limited physical ability to run around each day... I don't do a whole lot of running!! Though it has made me concentrate more on my writing... silver lining!!
It took my horse back riding away, one of my biggest passions through out my life. My body aches just thinking about it!! It's on my mind most days!! I miss it all the time!!
I can't make plans with people, everything is "well, I'll see on the day" Though more and more I am pushing myself to make plans and keep my fingers crossed.
It showed me who were true friends in my life... eeek... not many unfortunately, so many people scattered like cockroaches when the light comes on!! That hurt ALOT but at least I know now and I don't have to wonder. The ones who are with me, know the drill and accept me for who I am, what I have and all the lovely symptoms too.
It cost me my marriage yet it gave me the strength to leave an already miserable one... in a way it gave me something I never knew I had, the will to live a happy life, the knowledge that it can be taken away in a blink of an eye and to never settle. Emotionally I now am stronger than ever before in my life, I am now thinking for myself and not letting someone treat me badly or make me feel worthless, I am not and no one else is. I give Mastocytosis full credit for that. Had I not gotten sick I would have taken the abuse and given up.
Also, when I was diagnosed I watched my beautiful daughter and only child pull away from me and that broke my heart, she became cold and distant when I needed her love so much though I don't blame her and I know in time she will come around though now I hide everything from her, I pretend to feel fine when she's with me, I push myself too hard so she sees me as a "normal" mom who can do fun things, I know it's wrong for me but I need her so much and want her in my life.
I also never thought anyone would want to be in a relationship with such a bag of problems like me!! I felt I would be alone, outlived my usefulness....
I also know what it's like to see someone look on in horror when I go into anaphylactic shock in the back of an ambulance or on the floor in agony from a gastro attack or can't even move my head an inch from the bone pain or can't walk upright... I hate what it does to others. Recently someone has come along who says he doesn't care about that, says he'll be there whether it's on the floor, in an ambulance, in the hospital etc...
I wonder if that's fair to him? I keep thinking I should push him away for his own good, does he really know what he's getting himself into?.... I never want to cause anyone pain.... he sure is making it hard to resist though! A real sweetie!! :-)
What you say is so true about the value of life! There are so many who could never understand what we are saying here. They are consumed with trivial and or material things that mean nothing, just distractions from what matters most. Love, health, happiness, family, peace and contentment. And if we have had our health taken away this means we have to find even deeper meanings in all else. We have been given the gift of knowledge in what we are enduring, to educate the not so enlightens ones and to discover inner strength like we never thought imaginable. I have see it in me and so have others in my life. I know the power of positive thinking can move mountains, I know if I can stay happy in my life and avoid stress I feel better, maybe we can even cure ourselves, this is what I am being told and hoping for... every happy thought or action might just zap one masto spindle mutated obnoxious cell!! So we must agree to think happy thoughts and get zapping!!
Thank you Cocao for sharing this wonderful note with us and for ruining my make up.... it was worth it!!! I am here for you anytime you need to vent or a cyber hug! Nice to know I"m not alone in this and others understand!!
I didn't mean to write a novel!! haha
Big healthy hugs to you!!
Leslie
- By Cocoapuff68
- Posted October 1, 2009 at 10:44 pm
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OMG I love your novels!! it makes my day to know that we both can make each other cry !!! ty very much lol. When you where talking about you found someone who said he didn't care and would be there for all of it and you said exactly what I feel everyday for my husband, I love him so much...but sometimes now I wish we never met, because he wouldn't have to deal with this and he could have married someone that was healthy...But I love him..more than any man ever in my life and I am telling you that if this man says he will be there then give him the chance, our lives are short enough to have all this bad in it, if you get and give some happiness then it is worth anything and I would rather have 10 minutes of happiness than none at all. I also so get the horseback part when you said that I started my crying session because I loved to dance and sing even if it was just in the house with the kids..now I can't both my hips are so bad...and miss it so horribly and know that will never be again just those little things that where us...made us who we where are not there anymore ..so who am I ? What do I do to find what I am supposed to be? I am lost kinda walking in the fog never mind brain fog lol.
I so very understand the need for your daughter, When this started with me I couldn't stop holding her every second and crying. I know that I was so torn at that time between keeping her from seeing me crying all day and telling an 8 year old everything. I sat for days on my porch trying to breathe, sitting in the same chair turning red with throat clinching constantly like I was being choked and going to pass out. I finally started telling my friends that they needed to promise me to be there for Zabrina..she was going to need these women in her life to tell her about me. I know I will not go down easy and I will do everything in my power to fight this for her! she will grow up and know that I was sick and I did what I could. Just like your daughter will too kids all grow up and when they do they get it, the whole story and they figure out they love their parents! We can only do what we can no more and we strive for no less! If we can do this we can put on a red cape when we really need to!!! I'm not going to tell you to stop crying ever....because we have a right to our real feelings and we really got a crappy hand dealt to us!! We should really write a book...My life alone you would never believe lol kk I am sending you huge hugs and I am going to take some more meds cause thats what we do ;)
- By Poetessa
- Posted October 2, 2009 at 5:53 pm
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It's so nice to know someone really understands!!!
Just remember, you can still sing, I was trained in opera and I find singing really helps me through the bad nights, my neighbors must love me at 5am when I am belting out a Sarah Brightman song!!! But these are things we still can do, I am writing all the time now, I am working on my autobiography and I am also planning on a new career as a healer which I have been doing for a few years now though I can't heal myself, I can help others!! I will do whatever I can do to keep myself occupied and feeling fulfilled in my life and I will do more films but they will be different, they will have more meaning and about issues that you and I face everyday because it's my duty to reach out and help others in all this!!!
You will find new things you love to do that will give you a sense of satisfaction as I am doing and as everyone else who gets hit with something like this, we can't curl up and croak, we must fight every day for the small pleasures in life!! I am starting a new life now, soon I will find out if I am getting the home I put an offer on.... I will feather my new nest and begin a new which is very exciting!! The someone special in my life is amazing though I am so guarded, got burned a few times so I'm giving him a run for his money!! hhhaha He promises nothing will scare him away but he hasn't seen one really bad day yet, except when I looked at my new home and I stepped wrong down the stairs and immediately couldn't stand up right ..... that was attractive!!! What an old goat I am!!! haha
And go out with you husband and have fun, you don't need a Corona to have fun, I haven't had a drink in 8 years and I still can go out and laugh and act tipsy.... or ditsy I should say.... pain meds make me stupid but everyone gets a good laugh!! hahaha You will find your way my dear... I am trying everyday to do the same and if we can draw on each others strength and the others on here for the bad days which we all have and support each other on the good days..... this will not be as bad if we were alone in all this!!!
Look at this as if it will not be the end but a new and different beginning of a new chapter, a different chapter that we weren't expecting but you still have many good years ahead of you, don't accept anything less!! If your mind tells your body you are done then you will be done!! You must watch the film "What the Bleep Do We Know" and you will understand how important positive thinking and being happy is to our bodies, we control so much with our minds!!! Kill the masto with kindness!!
I am here, anytime day or night!! Remember that!!!
And smile, laugh, giggle, watch funny movies... do whatever you must to keep a smile on your face and things will improve day by day and when you feel terrible, ride it out and know that the good times are coming soon!!
I am off for my first over night getaway in almost 2 years... since my diagnosis!!! I am so excited, I have only been at hospitals for my vacations so this is so great!! But I'm in my jammies and have 10 minutes to get ready!! hahaha That is so "me"!!! haha
Have a wonderful weekend my dear and we'll touch base soon!!!!
Sending you tons of healing hugs!!
Leslie
- By Poetessa
- Posted October 3, 2009 at 7:37 pm
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Thank you!! I did and still am!! You too!!!
Hugs!
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