Well this is a random thoughts and updates blog now isn't it? I have been thinking about this whole activism thing. I am pretty sure that I am clueless on how to be an activist but I am pretty sure all you need is passion. I have passion but what I think lack is energy. Isn't that what it really takes to be an activist? Now there are many things that I would like to actively go out and get the word out about but in my world right now that would be of course FMD and how this disease is affecting more people the previously thought. A friend told me a couple of weeks ago about a man who I believe was 43 (may have been 47) died instantly FMD of the coronary arteries, and it caused a heart attack. It was only found after his wife who pushed for a autopsy because he was so young. It was a rare form of FMD but no the less it was FMD and it killed this man it is sad and tragic! This is scary people, this disease is killing people and its being missed because doctors don't know what the hell they are looking for, nor do they know what the hell they are looking at! We need to get the word out, we need to be talking to the our doctors, we need to question them if we have high blood pressure (as this could be a warning sign of FMD in the renal arteries). We need to get the word out to our friends and family as too many MEN, WOMEN, AND CHILDREN are not getting the proper diagnosis and treatments and they could then suffer the same fate as this young 43 year old man did.
As some of you already know, but many of you may not my paternal grandmother died at the age of 34, she passed from a brain aneurysm. With my doctors and piecing together what family history I have, we have concluded that she too probably had FMD. So there is the strong possibility of a genetic link as well, but then again I wonder a lot about this, considering how many people we are finding with this damn disease.
Anyway, maybe this is my way of being an activist by writing to all of you on my blog, because maybe just maybe some of you will tell someone that you love about this friend you have that has this shitty disease called Fibromuscular Dysplasia. And in turn they will talk to their doctor and another friend.
But that's all for tonight,
Peace**Chane
Monday, November 15, 2010
Friday, November 5, 2010
The Value of Crying?
Went to occupational and speech therapy this week, and found out I need to go to occupational therapy for an hour for the next eight weeks. 'My tone in my head is nothing like how it reads on here, it is rather sarcastic and blah really.' I am not even quite sure why (okay I do, but I really don't care to admit why), the strength in my left wrist and hand is nowhere near the "normal" range, according to the therapists scale book. For example my right arm squeezeablity is at a 76 my left arm is at a 35, that is a -2 deficiency, which according to her and her book is not good. Also as I have been saying, my thought processes and memory functions are kind of messed up. Oh joy! We haven't gotten into how were going to work on that yet.
The question I most had lingering that the therapist was able to answer for me, that nobody else thus far had was, if TIA's left no lasting "damage" how is it that I am having these problems with my left arm? And her response was "if you have repeated TIA's in the same area (like the same spot is affected) then you can have lasting or permanent damage". Well finally I know something, considering each TIA I have had has been in the exact same area.
My mood however has not improved much over the last few days-weeks, this could be due a number of factors. 1. its getting cold out, and being on what I like to call a medium level blood thinner (Plavix I think) I get cold easier. 2. I am not sleeping again, and I have yet to figure out the cause. 3. the holiday season tends to give me a case of the "blues" anyway 4. I think all the medicines I am on are making me kinda crazy 5. I need a break, but I am not even quite sure what that means. Maybe I am just going a bit crazy in general with all the stress of everything going on and I can't seem to just take it one day at a time lately? Even though I try so hard to do just that. I am not one to cry, and lately I have been crying over the littlest things. The truth is I hate crying, I hate people seeing me cry. And I keep crying, I have almost cried in front of instructors at school, friends, my kids. I did cry in front of one of my instructors, how embarrassing. Who knows how many people have figured out I was crying while I have talked with them on the phone. I want this crying shit to stop! I feel like I need to be stronger than this! So my question for all my readers is what is the value of crying? What does it do for you? Do you ever feel weak when you cry? Have you ever been told its not okay to cry? Have you been given that "look" like what the hell are you crying about? If crying is okay then why don't we do it more often? Or why do we look the other way when we see people crying? You don't have to answer in the comment section, but I really would like some feed back on this one cause I am struggling and I have argued with my partner over this one a lot, she believes crying is okay and very therapeutic. But as you may have guessed I disagree. So please feel free to email me and we can discuss it connersmom32@yahoo.com
Thanks,
Chane
The question I most had lingering that the therapist was able to answer for me, that nobody else thus far had was, if TIA's left no lasting "damage" how is it that I am having these problems with my left arm? And her response was "if you have repeated TIA's in the same area (like the same spot is affected) then you can have lasting or permanent damage". Well finally I know something, considering each TIA I have had has been in the exact same area.
My mood however has not improved much over the last few days-weeks, this could be due a number of factors. 1. its getting cold out, and being on what I like to call a medium level blood thinner (Plavix I think) I get cold easier. 2. I am not sleeping again, and I have yet to figure out the cause. 3. the holiday season tends to give me a case of the "blues" anyway 4. I think all the medicines I am on are making me kinda crazy 5. I need a break, but I am not even quite sure what that means. Maybe I am just going a bit crazy in general with all the stress of everything going on and I can't seem to just take it one day at a time lately? Even though I try so hard to do just that. I am not one to cry, and lately I have been crying over the littlest things. The truth is I hate crying, I hate people seeing me cry. And I keep crying, I have almost cried in front of instructors at school, friends, my kids. I did cry in front of one of my instructors, how embarrassing. Who knows how many people have figured out I was crying while I have talked with them on the phone. I want this crying shit to stop! I feel like I need to be stronger than this! So my question for all my readers is what is the value of crying? What does it do for you? Do you ever feel weak when you cry? Have you ever been told its not okay to cry? Have you been given that "look" like what the hell are you crying about? If crying is okay then why don't we do it more often? Or why do we look the other way when we see people crying? You don't have to answer in the comment section, but I really would like some feed back on this one cause I am struggling and I have argued with my partner over this one a lot, she believes crying is okay and very therapeutic. But as you may have guessed I disagree. So please feel free to email me and we can discuss it connersmom32@yahoo.com
Thanks,
Chane
Monday, November 1, 2010
The headaches:
Having had headaches most if not all of my teen years and all of my adult life it doesn't come as a shock to me any longer. What does come as a shock is that I can't get the right combination of medicines, or rescue medicine to finally go a day without one. Can I get a collective GRRRRRR Its been what just over 2 weeks since my TIA? And I have had a headache or a migraine everyday since. <<insert another grrrrr here>>> I know that my neurologist said I have to give the blood pressure medicine time to work, but I am getting impatient. I guess impatience goes with the territory when having FMD, since there are more questions than answers with this disease. What else does not come as a shock is having a headache everyday for so long (meaning having repeated heads for weeks on end), I have gone on like this before, not knowing any better. But I now know better and that it is my FMD that causes my headaches. And just a reminder in case your new to my blog or need a refresher FMD stands for Fibromuscular Dysplasia- a rare or rarely diagnosed non-inflamitory vascular disease for more information please visit this web site http://www.fmdsa.org/.
So anyway the point, well the point is, I keep having these headaches, and in the past as annoying and miserable as they would make me, I could fight through them. I am not having the same luck now. Its ticking me off. My focus isn't there, my fatigue is higher, my crabbyness level is off the charts and I feel like i need and IV drip line of caffeine. Speaking of caffeine THEY wanna take away my RED BULL! So now not only do I have to quit smoking, yes I know I should have already done this and its an evil horrible addiction, but on top of that they want me to give up Red Bull too. So I guess this blog goes with the one entitiled anger and frustration. HOW IN THE HECK AM I SUPPOSED TO CHANGE ALL OF THIS STUFF AT ONCE? Here is the list of things I need to do to hopefully survive FMD longer:
Quit smoking (I agree fully)
Lose 50lbs (okay but could I get credit for the 34 I've already lost to the other rare disease I have MALS)
Exercise more (fine cause chasing after 3 kids is never enough)
Eat right (okay doing that and I hardly eat due to the MALS again)
Lower stress (really some explain how this is possible after you come over and we have a nice long chat)
Okay now after you have read this list I must tell you I have been told NOT to do any strenous exercise that can raise my heart rate to high, no weight lifting, no softball, no skiing, no contact sports, nothing at all that could potentially cause me to strain my neck in anyway. Guess I can walk and swim and golf in the middle of January in Minnesota sounds like a blast... NO NO I'm not negative at all really I'm not... Just bitter party of one.
Finally I have no clue where I was going anymore on all of this so I think I will close by saying please feel free to book mark my blog in your favorites as I will not be posting it to my facebook wall every time I write any longer. I think enough people now know I have a blog and I don't feel its necessary do it every time so considers this a heads up. Secondly and MOST importantly MWVA got into the Pepsi Refresh Project so PLEASE please please please go vote everyday, we need this money for research and our support group! It only takes a minute and I would be ever so grateful! Oh and pass it on to your friends and your friends friends! Thank you http://www.refresheverything.com/search/?q=Mwva
Love to all Peace! Chano
So anyway the point, well the point is, I keep having these headaches, and in the past as annoying and miserable as they would make me, I could fight through them. I am not having the same luck now. Its ticking me off. My focus isn't there, my fatigue is higher, my crabbyness level is off the charts and I feel like i need and IV drip line of caffeine. Speaking of caffeine THEY wanna take away my RED BULL! So now not only do I have to quit smoking, yes I know I should have already done this and its an evil horrible addiction, but on top of that they want me to give up Red Bull too. So I guess this blog goes with the one entitiled anger and frustration. HOW IN THE HECK AM I SUPPOSED TO CHANGE ALL OF THIS STUFF AT ONCE? Here is the list of things I need to do to hopefully survive FMD longer:
Quit smoking (I agree fully)
Lose 50lbs (okay but could I get credit for the 34 I've already lost to the other rare disease I have MALS)
Exercise more (fine cause chasing after 3 kids is never enough)
Eat right (okay doing that and I hardly eat due to the MALS again)
Lower stress (really some explain how this is possible after you come over and we have a nice long chat)
Okay now after you have read this list I must tell you I have been told NOT to do any strenous exercise that can raise my heart rate to high, no weight lifting, no softball, no skiing, no contact sports, nothing at all that could potentially cause me to strain my neck in anyway. Guess I can walk and swim and golf in the middle of January in Minnesota sounds like a blast... NO NO I'm not negative at all really I'm not... Just bitter party of one.
Finally I have no clue where I was going anymore on all of this so I think I will close by saying please feel free to book mark my blog in your favorites as I will not be posting it to my facebook wall every time I write any longer. I think enough people now know I have a blog and I don't feel its necessary do it every time so considers this a heads up. Secondly and MOST importantly MWVA got into the Pepsi Refresh Project so PLEASE please please please go vote everyday, we need this money for research and our support group! It only takes a minute and I would be ever so grateful! Oh and pass it on to your friends and your friends friends! Thank you http://www.refresheverything.com/search/?q=Mwva
Love to all Peace! Chano
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