Finally heard of another person having scleroderma. Unfortunately, she's not living due to the disease. It would have been good to meet someone with my disease (because it's so rare) so that I could get some info and insight with dealing with it.
People think that by ignoring it (acting like I'm normal still) or by 'giving me space' about it, that their actually helping me through this. Well...their wrong! I'm not going to talk about it or bring it up because that's just how I am but for my friends and family (not everyone, you know who you are) to disregard this disease like a case of freakin eczema is slightly eff'd up!
This disease is real and there is a GREAT possibility I will DIE sooner than we all think. Now, don't get me wrong, I believe in GOD, in the power of the TONGUE, the LAW of ATTRACTION and hell everything else that involves positive thinking toward a positive outcome. But the reality is this DISEASE is REAL, not a figment of mine nor anyone else's imagination.
So being that it is real and IM the only one that has to deal with this reality DAY to DAY, it gets real HEAVY. VERY HEAVY to be exact.
If you truly know me, you know I'm always planning to do this or planning to do that. Sometimes I never follow through with those plans cause in the back of my mind, I knew whatever it was I was planning for wasn't going anywhere and I'd have another chance to plan for it again.
All that has changed. I'm at the point that I have to live day to day FOR REAL (not for fake or just to say this cliche). I'm no longer living for tomorrow. I have to make the best of each day (even if its just making sure I can catch my favorite show THE COMMUNITY and watch it uninterrupted)! I also resolved that I'm not be a service nor helpful to others when I'm not completely BEING MYSELF. That means speaking my mind (respectfully) being upfront, honest and sincere each and every time I'm interacting with people. Most people think I'm very blunt or whatever word you would choose to use to describe me when were interacting but I'm actually very passive.
So here comes the rudeness (some people have already been getting it-west philly). I Love you all but I love myself MORE and I want to make however long I'm still on this earth, the best years of MY LIFE, not yours.
Can I Live??? (~compliments of Ashy bka Ashley Henderson)
Peace, Love & LIVE LIFE!
Thursday, October 8, 2009
Tuesday, August 25, 2009
And the story goes...
Load of things have occurred in the past few weeks. Let's see....I've been back in forth to the hospital and had the most horrible procedure done. (I only say this because I've regained my fear of needles with my veins being hard and hard to find-hell that shit hurts!) So, I had a heart catheter performed to check if I have high blood pressure in lungs which in turn would help explain why I have constant shortness of breath and I'm always tired (& ready to go to sleep). Checking my heart and lungs for high blood pressure was a breeze! It was the numbing of my neck the made me cry like I tore my ACL all over again. :( I was so scared (by then I had been stuck two times very deep for an iv) that I begged a worker to hold my hand through it. After like 3-4 mins of the doctor poking my neck to numb me, it was pretty much over from there because I couldn't feel the actual catheter going in my artery.
Good news... I got my refund from school and I just knew I would have a car by now but I don't. whomp, whomp, lol! I pray that I have one by this weekend cause I truly have no clue how I'm gonna get to work monday (1st day) from 8-4pm then go to class at 5:20 and then get home after my last class at 10:40pm. It's too long of a day to coordinate catching the bus and getting rides. : (
Reunion...I've been planning a pseudo-reunion for my class, that's supposed to happen labor day weekend and there is hella work that still needs to be done! Ask me how the I'm gonna get it done without a car? (see why it's important I get that car asap? I got shit to do, like yesterday) Anyway, the update is I had an associate that jumped on my idea to throw this reunion way back in November while I was still in the N.O. Having this person involved didn't work out because in some twisted way, this fool thought that he was running the show and I was his peon? WTF! So, I told him (politely-well as polite as most of yall know I can be-not polite but no cuss words) that his services were no longer needed. Why the hell this fool sent out fliers two weeks ago for his own reunion for our same class on the same day as mine? He even invited me like I was gonna come to his event and not my own? (he has to be stupid or slow, really) So I call him up and he lies talking about he's throwing an after party to my party, even though his flier clearly said 9-2am. I said whatever. Well last week I go to my group on facebook that I established for the reunion I'm throwing and this fool posted his flier to my group, like they had something to do with one another. I called him and went off (no cuss words-promise). I made it clear that his busta ass was not welcome to any of my events and in case he decided on still showing up, I would make sure at any cost to get him escorted off the property. I promptly hung up after making my grand announcement, lol.
Needless to say he tried to get in good with me after this conversation and as I suspected people are very confused about Both of our events for the same purpose. BASTARD! This is one reason why I left Akron. It's like a bunch a crabs in a barrel that instead of lifting someone up and supporting them when they try to do good, their pull you back down to their level. I can't wait to leave here...again, lol.
Well good night all, peace and love!
Good news... I got my refund from school and I just knew I would have a car by now but I don't. whomp, whomp, lol! I pray that I have one by this weekend cause I truly have no clue how I'm gonna get to work monday (1st day) from 8-4pm then go to class at 5:20 and then get home after my last class at 10:40pm. It's too long of a day to coordinate catching the bus and getting rides. : (
Reunion...I've been planning a pseudo-reunion for my class, that's supposed to happen labor day weekend and there is hella work that still needs to be done! Ask me how the I'm gonna get it done without a car? (see why it's important I get that car asap? I got shit to do, like yesterday) Anyway, the update is I had an associate that jumped on my idea to throw this reunion way back in November while I was still in the N.O. Having this person involved didn't work out because in some twisted way, this fool thought that he was running the show and I was his peon? WTF! So, I told him (politely-well as polite as most of yall know I can be-not polite but no cuss words) that his services were no longer needed. Why the hell this fool sent out fliers two weeks ago for his own reunion for our same class on the same day as mine? He even invited me like I was gonna come to his event and not my own? (he has to be stupid or slow, really) So I call him up and he lies talking about he's throwing an after party to my party, even though his flier clearly said 9-2am. I said whatever. Well last week I go to my group on facebook that I established for the reunion I'm throwing and this fool posted his flier to my group, like they had something to do with one another. I called him and went off (no cuss words-promise). I made it clear that his busta ass was not welcome to any of my events and in case he decided on still showing up, I would make sure at any cost to get him escorted off the property. I promptly hung up after making my grand announcement, lol.
Needless to say he tried to get in good with me after this conversation and as I suspected people are very confused about Both of our events for the same purpose. BASTARD! This is one reason why I left Akron. It's like a bunch a crabs in a barrel that instead of lifting someone up and supporting them when they try to do good, their pull you back down to their level. I can't wait to leave here...again, lol.
Well good night all, peace and love!
Sunday, August 9, 2009
Being Thankful...
My dad has told me this so many times that when he begins this sentence, I can easily finish it. "Remember, when your doing bad and down on your luck, there is always someone out there that is worst off. So thank GOD that your not in their shoes."
My problem is how can I or continue to be thankful for not being worst off when my frame of reference of worst off is what I'm currently experiencing? Is it wrong that I can't look beyond my own issues and put on a happy face day in and day out? Is it wrong that though I have an enormous amount of empathy for those persons who are permanent disabled or ill, that I sometimes lose hope (and/or faith) that my situation will get better?
My dad would say, "Yes!" Some times I agree and other times I beg to differ. Until a person is pushed to their limit or better yet their threshold, you have no clue how you will look or deal with what has been dealt to you. I truly want to wake up each day and smile and thank GOD that I'm here another day to make right all the wrongs from the previous day but then comes my current hurdle.
My mind is 30 and telling me, "Go for it Asya! Just a few months ago you were working an 8 (sometimes more) hour shift, then you would come home and cook yourself dinner, maybe even wash and dry 3 loads of clothes and if you were convinced by one of your good friends, you would step out for a drink or something."
So I get up with all the intention of doing these things that I SHOULD be able to do but the outcome is very sad. I'm too exhausted to walk up and down stairs, so I sit and think, "What all do you need to do up here before you go downstairs because the next time you come back up, your going to bed?" So... I do everything I need to do before I go downstairs and the next thing, I think about is, "What is it I have to do today?" My main priority was to look for a job. Thanks to some great friends of mine, I had the luxury to hold off looking for a job till this past June. But when I was looking for a job, I had to coordinate catching the bus and that took a lot out of me because they didn't run very often. So on top of not getting much rest (joints hurt to bad to sleep well), I have to wake up at the crack of dawn to get on a bus that takes 40 minutes to get to a downtown that's 5 minutes away! *WTF!*
I wont drag this out but I would be gone for 8 hours and only visit possibly two jobs due to poor transportation and my joints stiffening, making it extremely painful to walk. Long story short...I reverted to applying online only ; ) It takes too much out of me to do anything "normal" these days. Cooking, I don't do much anymore cause it's hard to grasp things and again I get worn out. I don't work out anymore cause my range of motion is non- existent with my skin tightening. Hmmm....what else. Pretty much I'm like the shell of my actual self. I secretly try to do dances like the stanky leg or the jerk and my body just doesn't seem to receive the correct message from brain any longer. I get sad but those are the moments that I'm like, "Well at least I don't need help standing up or walking." LOL, some times I need help standing but I only ask for help when I'm around loved ones. Other times I grit my teeth and bear it cause isn't that what I'm expected to do?
You don't see people on Oprah who had trials and tribulations and gave into those urges to give up. No... the people you see on her and anyone else show are the people who don't complain or complain minimally but muster up the strength to persevere through it.
I want to be one of those people and I think with the continually support I get from my family and friends (including yall),I will gain membership in that club of perseverer's (might not be a word but yall get the drift).
Thanks for reading....Peace.
My problem is how can I or continue to be thankful for not being worst off when my frame of reference of worst off is what I'm currently experiencing? Is it wrong that I can't look beyond my own issues and put on a happy face day in and day out? Is it wrong that though I have an enormous amount of empathy for those persons who are permanent disabled or ill, that I sometimes lose hope (and/or faith) that my situation will get better?
My dad would say, "Yes!" Some times I agree and other times I beg to differ. Until a person is pushed to their limit or better yet their threshold, you have no clue how you will look or deal with what has been dealt to you. I truly want to wake up each day and smile and thank GOD that I'm here another day to make right all the wrongs from the previous day but then comes my current hurdle.
My mind is 30 and telling me, "Go for it Asya! Just a few months ago you were working an 8 (sometimes more) hour shift, then you would come home and cook yourself dinner, maybe even wash and dry 3 loads of clothes and if you were convinced by one of your good friends, you would step out for a drink or something."
So I get up with all the intention of doing these things that I SHOULD be able to do but the outcome is very sad. I'm too exhausted to walk up and down stairs, so I sit and think, "What all do you need to do up here before you go downstairs because the next time you come back up, your going to bed?" So... I do everything I need to do before I go downstairs and the next thing, I think about is, "What is it I have to do today?" My main priority was to look for a job. Thanks to some great friends of mine, I had the luxury to hold off looking for a job till this past June. But when I was looking for a job, I had to coordinate catching the bus and that took a lot out of me because they didn't run very often. So on top of not getting much rest (joints hurt to bad to sleep well), I have to wake up at the crack of dawn to get on a bus that takes 40 minutes to get to a downtown that's 5 minutes away! *WTF!*
I wont drag this out but I would be gone for 8 hours and only visit possibly two jobs due to poor transportation and my joints stiffening, making it extremely painful to walk. Long story short...I reverted to applying online only ; ) It takes too much out of me to do anything "normal" these days. Cooking, I don't do much anymore cause it's hard to grasp things and again I get worn out. I don't work out anymore cause my range of motion is non- existent with my skin tightening. Hmmm....what else. Pretty much I'm like the shell of my actual self. I secretly try to do dances like the stanky leg or the jerk and my body just doesn't seem to receive the correct message from brain any longer. I get sad but those are the moments that I'm like, "Well at least I don't need help standing up or walking." LOL, some times I need help standing but I only ask for help when I'm around loved ones. Other times I grit my teeth and bear it cause isn't that what I'm expected to do?
You don't see people on Oprah who had trials and tribulations and gave into those urges to give up. No... the people you see on her and anyone else show are the people who don't complain or complain minimally but muster up the strength to persevere through it.
I want to be one of those people and I think with the continually support I get from my family and friends (including yall),I will gain membership in that club of perseverer's (might not be a word but yall get the drift).
Thanks for reading....Peace.
Tuesday, August 4, 2009
The Diagnosis...
So...I visited the dr. here in Ohio for the first time last Friday and it went well to say the least. My brother (from another mother) was there to support me and that helped a lot. The dr. was crazy funny and quick-witted. "Scleroderma is what it is", he said. "Depending on if its just skin related or lung related, it can be gone in at least five years." The tears began to fall. After 10 months of practically being hopeless and afraid of what life would be with an illness no one seems to be able to diagnosis, I was relieved to finally hear some good news. Though the good news came with some bad..it will get worse before it gets better. I'm glad (at least for now) that I will not have to adjust to living with this the REST of my LIFE.
Today I went in to see a pulmonologist and my dr. to determine if its lung related. The pulmonologist suggested that I may have PULMONARY HYPERTENSION. Something wayyyyyy separate than previous thought. I had to take 2 PFT (pulmonary function tests), a walking test (determines my O2 levels), a chest x-ray and they took 16 tubes a blood. After all of this I took a well deserved 3 hour nap. My hopes I won't have to go through 6 additional months of these types of tests before beginning treatment but I understand it may be a necessary sacrifice...but this sacrifice sucks! I go in again Thursday for an echocaridogram and something involving molecular imaging?
Funny side note: my dr. asked,"Have I told my new job about my health?" I responded, "No, I didn't want to hinder my chances of being employable." He then asked, "They did notice how hard it is for you to get up from chairs or how you walk?" I told him, "No, I don't think so because I fake it." He laughed, "How do you fake being in such bad condition." I laughed and said," I just do." ; ) Men...they will never have a clue.
I'm still trying to figure out do audio clips instead of typing my blogs. As soon as I figure this out, I will try to blog at least twice a week, until then I will only blog once a week.
Peace.
Today I went in to see a pulmonologist and my dr. to determine if its lung related. The pulmonologist suggested that I may have PULMONARY HYPERTENSION. Something wayyyyyy separate than previous thought. I had to take 2 PFT (pulmonary function tests), a walking test (determines my O2 levels), a chest x-ray and they took 16 tubes a blood. After all of this I took a well deserved 3 hour nap. My hopes I won't have to go through 6 additional months of these types of tests before beginning treatment but I understand it may be a necessary sacrifice...but this sacrifice sucks! I go in again Thursday for an echocaridogram and something involving molecular imaging?
Funny side note: my dr. asked,"Have I told my new job about my health?" I responded, "No, I didn't want to hinder my chances of being employable." He then asked, "They did notice how hard it is for you to get up from chairs or how you walk?" I told him, "No, I don't think so because I fake it." He laughed, "How do you fake being in such bad condition." I laughed and said," I just do." ; ) Men...they will never have a clue.
I'm still trying to figure out do audio clips instead of typing my blogs. As soon as I figure this out, I will try to blog at least twice a week, until then I will only blog once a week.
Peace.
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