I've come to a point where I feel like I am so sick and tired of my family, I never threw my age out there when upset but now it's too much!!! I am twenty-freaking-seven years old!!!! I know I don't go about certain situations properly but gosh, leave me alone!!!!
Why do I have to be questioned about my every move? Who cares if I went to a friend's house? I came back home right? If I say stop treating me like a little kid, I'm going to hear stop acting like one. I just can't anymore here.....
I want to be out of this house so bad, why do I feel like this? As I am typing this I feel like crying because I mentally can't deal with these people anymore. Yes, "these people" are people who love me and care for me, this I know, but oh my gosh, please just go away.
I would love to be able to live on my own, it would be a dream come true for me, to be able to have my money right, my money issues together, a great paying job, help them from afar, and visit them when I felt like it.
Think my whole family sees me as a child, am I the youngest you may ask. No I am not. I just think so many things would be better if I was gone. You know those movies or TV shows that say "I wish I was never born?" Then take you out of yourself to see how life would be if you weren't around and you get to see how bad off people were without you. I wish I could see how life would be without me, not that I wasn't born, but that I was on my own.
This is a growing frustration for me and I feel as though it is only getting worse, my only escape is to spend a night or two at my sister's place for a bit of relief. Right now, I need more than relief I need a permanent fix, besides my bills, my family is my BIGGEST stress factor and it shouldn't even be this way.
My family should be the ones I run to, not feel like running away from, because that's how I feel in this house, like running away. I don't know how much more I can take of this and I don't want to feel like this anymore. I don't want to be here anymore...... I know as much as I am tired of them they are tired of me as well, I know that.
I'm scolded about every aspect of my life and I just can't take it anymore......
I just can't........
I don't want to be here anymore.....
Let me be away long enough to miss them and want to come back, right now I just feel like being so far away.....
Father God, I ask you to help me not feel this way because I feel like it is wrong, the #1 group of people that have been with me through my sickness and during good and bad times I can no longer stand anymore. I hate coming home, I hate being here, I jump at the chance of going out, please Lord help me before something terrible happens to me. Please God I lay these burdens with you asking for your help and guidance because I am so lost right now. In your precious Son's Jesus' name
-Amen
Wednesday, December 7, 2011
Tuesday, November 29, 2011
Leftovers
Who knows you the best? Your
family, they know the good, bad, and the ugly. Some of your friends just know
the good, some know the good and bad, a select few know the ugly. If we treated
our friends like we did our family, would we have any friends left? Seriously, think about it, the way we yell and scream at each other, storm off when we get angry and silent treatments. Some of you may already treat some of your close friends as family so they are used to it, but imagine treating all like the way you treat your family.
Being that Thanksgiving just
passed, how many turkey recipes can you come up with for those leftovers before
getting tired of them? We give our friends the best of us and leave our
families with the leftovers. Sometimes we jump with a “YES” to do something for
a friend but in turn drag our feet at a family members request, make faces, or
speak under our breath when doing so. Perhaps your family is tired of your leftovers, maybe it's time for your family to receive the first piece of you, the best piece. Don't you like being the first one to be served a meal? It's time to give your family the best of YOU.
I apologize to my family for ALWAYS leaving them with my leftovers....
(Thanks to Victory 91.5 for this message and giving me the idea of this post.)
Tuesday, November 15, 2011
Response from my GA Senator Saxby Chambliss
My concern was that Medicare will pay for everything a kidney dialysis patient needs. Once you get a transplant, not so much. They will fully pay your medications for 3 years or 36 months from the date of your transplant and cut you dry. Immunosuppressive drug are highly expensive and unless you are rich or continue to do fundraising you will eventually run out of funds for your medications.
The dialysis business is a billion dollar industry and yet they do not want to give just 1% of their income to help people pay for those life-saving drugs they need. It's always about money.....
Dear Ms. Romain:
Thank you for contacting me regarding S. 1454 , the "Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 20 11 ." It is good to hear from you.
Organ transplant recipients must take immunosuppressive drugs daily for the life of the transplant in order to prevent rejection of the organ by the body. The Medicare End Stage Renal Disease (ESRD) program pays for dialysis, transplantation, and immunosuppressive drugs for kidney disease patients. However, the program ends its coverage after 36 months for those who do not qualify for Medicare or Medicaid.
S. 1454 was introduced on July 29, 2011 , and was referred to the Committee on Finance. This legislation would provide immunosuppressive drug coverage through Medicare Part B for all ESRD transplant recipients beyond the 36 month coverage limit. Should this legislation come before the full Senate , I will keep your thoughts in mind.
I understand the need to improve benefits under the Medicare program, and we are making efforts to guarantee the viability and vitality of the program. As a member of the United States Senate, I will continue to work to make sure our federal health care programs provide the best possible treatment our country has to offer.
If you would like to receive timely email alerts regarding the latest congressional actions and my weekly e-newsletter, please sign up via my website at: www.chambliss.senate.gov . Please let me know whenever I may be of assistance.
Tuesday, August 30, 2011
Don't cry...
I'm glad I didn't waste too many tears just then, the guy who called me called me back with GREAT news! My medication will be covered for this month and a few after that.
Medicaid would pay 20% of my medicine while Medicare covered the 80%, but Medicaid is not doing that anymore. I would have to come up with that and that would have been about $500 a month (more than my car note). He checked my account and saw that the Medicaid is paying for my Medicare premiums. One of my medications were in the $200s but the co-pay now comes down to $2.50!
I'm not out of the clear yet, this buys me some time but I have to do some research on different coverage out there that would be right for me and my case.
I have suck a headache right now, but I'm on steady ground and doesn't change the fact that after discussing with my friend (Domanie) that I need to re-connect and re-focus on who is supposed to be in that #1 position and that is God, He has done way too much for me to leave Him behind.
Medicaid would pay 20% of my medicine while Medicare covered the 80%, but Medicaid is not doing that anymore. I would have to come up with that and that would have been about $500 a month (more than my car note). He checked my account and saw that the Medicaid is paying for my Medicare premiums. One of my medications were in the $200s but the co-pay now comes down to $2.50!
I'm not out of the clear yet, this buys me some time but I have to do some research on different coverage out there that would be right for me and my case.
I have suck a headache right now, but I'm on steady ground and doesn't change the fact that after discussing with my friend (Domanie) that I need to re-connect and re-focus on who is supposed to be in that #1 position and that is God, He has done way too much for me to leave Him behind.
The End of the Road...
The phone call came in, the one I wasn't even thinking about yet. Your funds are coming to an end. What does that mean to you? It means that I will no longer have money to cover my expensive drugs to help me keep tricking my immune system into thinking the kidney in my body is really mine and belongs to me.
My normal first reaction is to cry, sob, wail, whatever you want to call it, THEN tell myself God will make a way. I really can't afford to do that this time, even though the tears will come because of the uncertainty, I will have to make some phone calls.
Getting insurance is not that easy when you have a pre-existing condition, they are quick to deny you because they see you as dollar signs and honey, you have too many dollar signs attached to your sickness.
I have to start taking action quick because I don't want to lose my kidney and go back to doing dialysis. I just want to tell you guys that I am really scared right now....
.
My normal first reaction is to cry, sob, wail, whatever you want to call it, THEN tell myself God will make a way. I really can't afford to do that this time, even though the tears will come because of the uncertainty, I will have to make some phone calls.
Getting insurance is not that easy when you have a pre-existing condition, they are quick to deny you because they see you as dollar signs and honey, you have too many dollar signs attached to your sickness.
I have to start taking action quick because I don't want to lose my kidney and go back to doing dialysis. I just want to tell you guys that I am really scared right now....
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| I really don't want to go back to doing this again..... |
Saturday, August 20, 2011
What have I done?
In my previous post I went on to tell you about my trip to NY and how my parents were not too happy about it. Well I've been back now for 10 days now and they haven't spoken to me. I don't know why I assumed they would have talked to me like nothing ever happened. I just didn't realize the extent of the damage I have created.
The night I came back, I arrived before my parents did, I was already tense about going home and facing them but this just added to it. I was in my room when they came home, they arrived after 10pm, separately. I asked my younger sister for advice, "should I knock on their door or just open it to say hello?" We came to the conclusion that if I knock I was guaranteed an answer, right? Well I knocked and got no answer, my sister was laughing in the living room, usually when you knock you would have heard "yes?" but that didn't happen. I opened the door and walked in, said "hi" to them, they response was very very dry and low. I stepped out backwards out of the room. Everyday since then I've said "good morning, hi, hello" I still get the same dry returns.
I took the opportunity to stay at my sister's place while she is away in NY for a few days, I know my parents won't miss me since I already was gone for two whole weeks. I got a weave put in yesterday for the first time and I knew this would get their attention! Did I do it for them, hecks no! It was for a friend and a photo shoot to promote her sister's business. It was a short weave, but when I got home I got the dry "hellos" my mother looked at me as if she didn't know and my father never looked up to see me, not even sure if he saw my head at all.
Typing this right now brings tears to my eyes, I feel like I let them down so much and they have reached the point of giving up, oh wait not "giving" because they did give up and don't know what to do with me anymore.
In the end I realized I dropped my family, who is always around me for my boyfriend who lives miles away from me. What a sacrifice, huh?
My friends say give it time they'll come around, but how long?
The night I came back, I arrived before my parents did, I was already tense about going home and facing them but this just added to it. I was in my room when they came home, they arrived after 10pm, separately. I asked my younger sister for advice, "should I knock on their door or just open it to say hello?" We came to the conclusion that if I knock I was guaranteed an answer, right? Well I knocked and got no answer, my sister was laughing in the living room, usually when you knock you would have heard "yes?" but that didn't happen. I opened the door and walked in, said "hi" to them, they response was very very dry and low. I stepped out backwards out of the room. Everyday since then I've said "good morning, hi, hello" I still get the same dry returns.
I took the opportunity to stay at my sister's place while she is away in NY for a few days, I know my parents won't miss me since I already was gone for two whole weeks. I got a weave put in yesterday for the first time and I knew this would get their attention! Did I do it for them, hecks no! It was for a friend and a photo shoot to promote her sister's business. It was a short weave, but when I got home I got the dry "hellos" my mother looked at me as if she didn't know and my father never looked up to see me, not even sure if he saw my head at all.
Typing this right now brings tears to my eyes, I feel like I let them down so much and they have reached the point of giving up, oh wait not "giving" because they did give up and don't know what to do with me anymore.
In the end I realized I dropped my family, who is always around me for my boyfriend who lives miles away from me. What a sacrifice, huh?
My friends say give it time they'll come around, but how long?
Tuesday, August 2, 2011
Keep it in the closet...
This trip that I am currently on in NY has brought me so much happiness and distress at the same time.
Point blank, yes, I came here to see my boyfriend and up to today I have seen him everyday except Sunday (no religious connection for this, I was just too tired). We spent his birthday together (8/1/11) and had a great day. Every time I think about him or see him I just smile so much.
The distress comes from what I left behind, my family. I think I disappointed all of them so much, my 2 sisters along with mother and father. I already told you guys what happened when I mentioned NY to my mother and how she went off and sent my father after me. Well, I never gave them the full details of my trip, what day I was leaving, what time, or when I was even coming back. I figured why go through all of that again so I just kept it to myself while leaving them in the dark.
The night I left, I said bye to my mother and she asked where I was going, I replied to my sister's place because I was getting a ride to the airport in the morning. She looked at me with disdain as if her face said "you're going to get what's coming for you." Went to my father and told him goodbye and asked where I was going, I told him and he shrugged his shoulders, I turned away with my head hung low.
Since I've been here they have not accepted my house calls so I gave up. I spoke to my younger sister about it and I feel as though she has taken their side, actually there are no sides to take in the matter, I went about all of this wrong. So how can I possibly expect anyone to side with me when I'm in the wrong... I can't.
How did I disappoint my older sister? By when I asked her to send me my medication. As a person who takes medication you need to be sure you have all your meds for traveling. By the time I called in my refills I knew it was too late but hoped it would make it the day before I left.
I see I am the type of person who does not think things through and just acts, I don't think of the the after I think about right now, I don't think about others, I only think about myself.
Keep it in the closet...why is it that your friends will know all the minute details but your family is the last to know? The people who live with you, know your ways and have supported and put up with you for years are now treated as strangers.
No matter how old I get I still need to grow up.
Point blank, yes, I came here to see my boyfriend and up to today I have seen him everyday except Sunday (no religious connection for this, I was just too tired). We spent his birthday together (8/1/11) and had a great day. Every time I think about him or see him I just smile so much.
The distress comes from what I left behind, my family. I think I disappointed all of them so much, my 2 sisters along with mother and father. I already told you guys what happened when I mentioned NY to my mother and how she went off and sent my father after me. Well, I never gave them the full details of my trip, what day I was leaving, what time, or when I was even coming back. I figured why go through all of that again so I just kept it to myself while leaving them in the dark.
The night I left, I said bye to my mother and she asked where I was going, I replied to my sister's place because I was getting a ride to the airport in the morning. She looked at me with disdain as if her face said "you're going to get what's coming for you." Went to my father and told him goodbye and asked where I was going, I told him and he shrugged his shoulders, I turned away with my head hung low.
Since I've been here they have not accepted my house calls so I gave up. I spoke to my younger sister about it and I feel as though she has taken their side, actually there are no sides to take in the matter, I went about all of this wrong. So how can I possibly expect anyone to side with me when I'm in the wrong... I can't.
How did I disappoint my older sister? By when I asked her to send me my medication. As a person who takes medication you need to be sure you have all your meds for traveling. By the time I called in my refills I knew it was too late but hoped it would make it the day before I left.
I see I am the type of person who does not think things through and just acts, I don't think of the the after I think about right now, I don't think about others, I only think about myself.
Keep it in the closet...why is it that your friends will know all the minute details but your family is the last to know? The people who live with you, know your ways and have supported and put up with you for years are now treated as strangers.
No matter how old I get I still need to grow up.
Friday, July 8, 2011
In his eyes....
He doesn't know what to say anymore, but it's all in his eyes. The pain of not knowing what to do or say anymore shows in his eyes. When he looks at me I can see it in his eyes though he may act as if everything is alright. These eyes belong to my father. I am a 27 year old female who at times makes decisions on my own without consult from anyone and not caring about the backlash.
My father is a special man, who observes things before commenting, but aren't most fathers this way? Lately he has been quiet with me, but I get the usual 'good morning,' 'have a nice day,' and 'may God be with you.' Though, now I believe he is at a loss for words.
There is no manual given to any parents on how to raise your children, when to say what, or how to say it, this is a lesson that you go through blind at times. I believe my father is a quiet man or is it that he thinks why speak when no one will acknowledge what I have to say anyway? I'm sorry dad if you feel this way...
The recent decision that I made, well it's not really recent I bought my ticket to NY last month but it was just this week they found out about it, July 6th to be exact. My mother had been discussing a wedding event that is coming up and I said something about hoping to be here for it. She asks where will I be and I told her about NY, wow, she was livid! She went off saying that "if the man wanted to see me then he would come" talking about my boyfriend in NY. After that I heard her say "I know you're not going up there to look into each other's eyes and smile," which I laughed about, until I really understood what she was getting at. I really hate when she thinks that way about me, it makes me feel sad. For those of you who know me, I'll let you decide whether or not I am flying miles away from home just to have sex with my boyfriend. *makes a face* Mind you I love NY and I would go there whenever possible, so I really don't mind going up there.
I don't like making my parents upset but I need to do things that make me happy sometimes, right? My mother went off to her room and next thing I know my father came out. "What's this I hear about you going to NY? What's in NY for you?" Lol I love him, my mother will come right out and say it that I looking to have sex, but my father can't seem to utter the words at all, the man still won't talk to me about dating which is a way passed due subject, smh see no parent's manual. That talk should have happened as a teenager.
There he is getting ready for work, straight faced and head down, wordless. He truly does not know what to say to me or he is doing that other thing he does, which is collecting his thoughts, making ready his case before presenting any materials at all. If that's the case then I'll be in for some sort of speech when he is ready to give it.
My boyfriend maybe viewed as the enemy just about now, sorry babe.
In his eyes he sees his daughter growing up and possibly growing apart, but no matter what I will always love my dad.
*Daddy's little girl*
My father is a special man, who observes things before commenting, but aren't most fathers this way? Lately he has been quiet with me, but I get the usual 'good morning,' 'have a nice day,' and 'may God be with you.' Though, now I believe he is at a loss for words.
There is no manual given to any parents on how to raise your children, when to say what, or how to say it, this is a lesson that you go through blind at times. I believe my father is a quiet man or is it that he thinks why speak when no one will acknowledge what I have to say anyway? I'm sorry dad if you feel this way...
I don't like making my parents upset but I need to do things that make me happy sometimes, right? My mother went off to her room and next thing I know my father came out. "What's this I hear about you going to NY? What's in NY for you?" Lol I love him, my mother will come right out and say it that I looking to have sex, but my father can't seem to utter the words at all, the man still won't talk to me about dating which is a way passed due subject, smh see no parent's manual. That talk should have happened as a teenager.
There he is getting ready for work, straight faced and head down, wordless. He truly does not know what to say to me or he is doing that other thing he does, which is collecting his thoughts, making ready his case before presenting any materials at all. If that's the case then I'll be in for some sort of speech when he is ready to give it.
My boyfriend maybe viewed as the enemy just about now, sorry babe.
In his eyes he sees his daughter growing up and possibly growing apart, but no matter what I will always love my dad.
*Daddy's little girl*
Friday, May 20, 2011
Insurance vs. Assurance
I love how Georgia works (sarcasm). I'll tell you my story with insurance. When I was first diagnosed with Lupus in NY at the age of 14, my doctor (Dr. Smalls) told my parents that I have an expensive disease. I had HIP insurance but once I got sick they were an absolute nightmare, I needed so much authorization before seeing any doctor and it had to be one of their doctors. I remember when my hip joints started to deteriorate I had to jump through hoops to see any doctors (no pun intended). After having enough of that NY had a great insurance from Center Care and I got Medicaid, we were blessed because I was seeing many doctors. (I couldn't stay on my parents coverage because of my illness)
When I reached the point of kidney failure I received Medicare to pay for my dialysis treatment. (Medicaid is in each state and Medicare is nationwide, just wanted to let you know the difference). When I told one of my doctors my family and I were moving to GA they seemed to be concerned and I now understand why. Once I came down here it took some time before I could get insurance because it takes a year to be a resident of the state. Paying for things out of pocket was tough.
Once I got my kidney transplant in 2008 I was told that I would lose my Medicaid coverage one year after transplant and the Medicare would stop 3 years after the date of transplant. Yippie! Here's your kidney, now since you have it we don't have to pay for you anymore. I honestly thought maybe I should just stay on dialysis if that means I get to keep my insurance.
March 2011, I got the notice that my Medicare insurance would be up by the end of April, I knew this day was coming but I didn't know what to do. I was seriously very scared and I think my family shared the same sentiments. I thought to myself God would not bring me this far as with having both hips replaced, all these tests I've done, all these hospitalizations since my teenage years, and a kidney transplant to just drop me. Best believe me God did not drop me!
I once had Medicaid when I got to GA but for the life of me I can not remember why or when it stopped. I printed out a Medicaid application and filled it out, they received it on April 29th, maybe about 10 days after I received a letter saying that I was approved and they would cover any medical expenses that have accrued from the beginning of the year! My family was so happy and relieved! God is good!
Insurance vs. Assurance? Yes having insurance is a good thing but having the assurance that God is working in your favor is a blessing! Thank you God for loving me!
When I reached the point of kidney failure I received Medicare to pay for my dialysis treatment. (Medicaid is in each state and Medicare is nationwide, just wanted to let you know the difference). When I told one of my doctors my family and I were moving to GA they seemed to be concerned and I now understand why. Once I came down here it took some time before I could get insurance because it takes a year to be a resident of the state. Paying for things out of pocket was tough.
Once I got my kidney transplant in 2008 I was told that I would lose my Medicaid coverage one year after transplant and the Medicare would stop 3 years after the date of transplant. Yippie! Here's your kidney, now since you have it we don't have to pay for you anymore. I honestly thought maybe I should just stay on dialysis if that means I get to keep my insurance.
March 2011, I got the notice that my Medicare insurance would be up by the end of April, I knew this day was coming but I didn't know what to do. I was seriously very scared and I think my family shared the same sentiments. I thought to myself God would not bring me this far as with having both hips replaced, all these tests I've done, all these hospitalizations since my teenage years, and a kidney transplant to just drop me. Best believe me God did not drop me!
I once had Medicaid when I got to GA but for the life of me I can not remember why or when it stopped. I printed out a Medicaid application and filled it out, they received it on April 29th, maybe about 10 days after I received a letter saying that I was approved and they would cover any medical expenses that have accrued from the beginning of the year! My family was so happy and relieved! God is good!
Insurance vs. Assurance? Yes having insurance is a good thing but having the assurance that God is working in your favor is a blessing! Thank you God for loving me!
The Last Day!
Today is my last day getting treatment for this BK virus! Today my younger sister Arleen has accompanied me. I kept asking her "are you sure?" Lol! It's such a long process so I had to make sure she was willing to do it! I warned her that I would be here for hours! Today in particular is a longer day because I had to get my labs drawn in other building then walked over to the building where I would be getting the infusion. She told me she wanted to be here because she is under the impression that I hate her. I know we have our differences but I do not hate my sister. I do know and understand that she hates hospitals.
At 10 o'clock I went up for my blood tests and got to the infusion building (Building 95) at 10:26 for a 10am appointment (yeah yeah, I know I should have gotten here earlier, but I hate mornings). It was 11:33am before anyone could tend to me, it seems as though they were overbooked for today. Found a vein on one try but not before searching long and hard for it (I appreciate that very much). It is now 1:43pm and I may be here for another 1 or 2 hours <sigh>. I have a graduation I am attending tonight, I am not worried about that, but my sister will be using my car to go to work after we get home. If she can make it back within the 6 o'clock hour than it's cool.
I mean these random health issues I get come at me and I'm like whatever, not that I don't care but because I know God is with me and by my side, so the punches can keep coming. I think that is all I have for today, so thank you for reading this and have a blessed day!
At 10 o'clock I went up for my blood tests and got to the infusion building (Building 95) at 10:26 for a 10am appointment (yeah yeah, I know I should have gotten here earlier, but I hate mornings). It was 11:33am before anyone could tend to me, it seems as though they were overbooked for today. Found a vein on one try but not before searching long and hard for it (I appreciate that very much). It is now 1:43pm and I may be here for another 1 or 2 hours <sigh>. I have a graduation I am attending tonight, I am not worried about that, but my sister will be using my car to go to work after we get home. If she can make it back within the 6 o'clock hour than it's cool.
I mean these random health issues I get come at me and I'm like whatever, not that I don't care but because I know God is with me and by my side, so the punches can keep coming. I think that is all I have for today, so thank you for reading this and have a blessed day!
Friday, May 6, 2011
Be my guest...
I'm back in the hospital for my second treatment, actually found out today I'm receiving "chemo." There is such a stigma that comes with that word and no, chemo doesn't only apply to cancer patients. Today it took over an hour to find a vein in my either of my arms and was stuck 4 times with needles. Sometimes I'm so numb to these things, they try to relax you by saying "take a deep breath in and let it go." I just look at them straight in the face or directly where they are sticking the needle, I've been doing this since 14, but it doesn't mean that sometimes on a rare occasion I don't feel pain, today I felt it.=( They used a baby needle on me as usual because my veins are so tiny and scarred up from over the years of endless poking. The nurse asked me to keep drinking for awhile to try to make my veins plump, also warm compress was added (not quite sure the significance of this). When they finally found a vein the nurse said that my blood was dark and further explained that it means I'm dehydrated. I need to help them help me by drinking plenty of fluids the previous day of getting anything done that has to do with my veins.
Today I am here alone, my parents had to work today, my older sis had things to do and my younger sis has finals today (she doesn't like hospitals anyway.) Yes, I know "you came in this world alone and you leave alone," but in that brief time in between I like to be with people. I'm telling you, if I didn't have my laptop I don't know what I would do with myself, they do have TVs here so I guess that could help.
I think I need to start testing my friends to see who is really there for me, I should have tried to ask someone to come with me if they could. It's not them it's me really, being afraid to ask. People forget that you are sick when you "look" well and healthy, sometimes I want to forget but I can't, I have reminders everyday of what I have to deal with. Well I'll be back here again in 2 weeks so I shall see about that!
I guess I'm done, thought I had more to say.
Today I am here alone, my parents had to work today, my older sis had things to do and my younger sis has finals today (she doesn't like hospitals anyway.) Yes, I know "you came in this world alone and you leave alone," but in that brief time in between I like to be with people. I'm telling you, if I didn't have my laptop I don't know what I would do with myself, they do have TVs here so I guess that could help.
I think I need to start testing my friends to see who is really there for me, I should have tried to ask someone to come with me if they could. It's not them it's me really, being afraid to ask. People forget that you are sick when you "look" well and healthy, sometimes I want to forget but I can't, I have reminders everyday of what I have to deal with. Well I'll be back here again in 2 weeks so I shall see about that!
I guess I'm done, thought I had more to say.
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| Teeny tiny needle for a teeny tiny arm |
Tuesday, May 3, 2011
Atlanta Hair-Show
I have been natural for 3 years now and it was this past week that I have been having so much fun being natural!
On Thursday April 28, I went to a meetup with my friend (@_Doremi on twitter) and we got to meet Ms. Vaughn, Meechy Monroe, and Natural Chica! We had fun also some FBI activity in the restaurant that was next door to where we were. Actually it was a Tapas restaurant where we were supposed to meet there, but that place got shutdown, who knows what was going on, so arrangements were made with the adjacent restaurant. I can't remember the name but it had "Tavern" in the title.
I can't wait to get involved in more activities!
On Thursday April 28, I went to a meetup with my friend (@_Doremi on twitter) and we got to meet Ms. Vaughn, Meechy Monroe, and Natural Chica! We had fun also some FBI activity in the restaurant that was next door to where we were. Actually it was a Tapas restaurant where we were supposed to meet there, but that place got shutdown, who knows what was going on, so arrangements were made with the adjacent restaurant. I can't remember the name but it had "Tavern" in the title.
Sunday we went to the hair show, that is my sister and I. We saw the owners of Miss Jessie's and we made some purchases. Hair shows are a great place to buy goods, can you say DISCOUNTS?!?! Lol! We really had to keep our heads on straight so we didn't break the bank or come down with a serious case of buyers remorse! I think we did alright.
I can't wait to get involved in more activities!
Monday, April 25, 2011
Do you remember the time? (Actually I don't)
Today my younger sister was telling me that her professor called her today, to inform her that they would not be there and asked her to take roll and tell the other students what to do for today. Naturally, I laughed at her, you know the teacher's pet always gets looked down on.
I told my father of the occurrence and he said how that happened to me twice!! To my surprise I was in shock and sent a text to my sister and let her know. She felt much better after this, but I didn't. Not because I was considered a teacher's pet but because of how poor my memory is.
After being diagnosed with Lupus I think my memory got bad. They do talk about a "Lupus fog." You can find more info about that here: http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnliving.aspx?articleid=2257&zoneid=527. After my father told me that, I went back to him and told him that he is blessed with a great memory. It makes me sad at times when I can't remember things that I experienced myself, it's quite maddening actually.
I thought maybe it was me and I had selective memory. I didn't want to give Lupus any credit over me, but why would I select things that I encountered to exclude from my own memory, whether a joyous or unhappy moment?
I am a young person and when someone starts what is supposed to be a funny story with "do you remember when....." I smile and from there I have 2 choices to make. Lie or just say "No, I don't actually," either way the story will be re-told.
I feel like I should document everyday of my life just so I can remember it happened. I wonder how will I be in my old age? Only God knows!
I told my father of the occurrence and he said how that happened to me twice!! To my surprise I was in shock and sent a text to my sister and let her know. She felt much better after this, but I didn't. Not because I was considered a teacher's pet but because of how poor my memory is.
After being diagnosed with Lupus I think my memory got bad. They do talk about a "Lupus fog." You can find more info about that here: http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnliving.aspx?articleid=2257&zoneid=527. After my father told me that, I went back to him and told him that he is blessed with a great memory. It makes me sad at times when I can't remember things that I experienced myself, it's quite maddening actually.
I thought maybe it was me and I had selective memory. I didn't want to give Lupus any credit over me, but why would I select things that I encountered to exclude from my own memory, whether a joyous or unhappy moment?
I am a young person and when someone starts what is supposed to be a funny story with "do you remember when....." I smile and from there I have 2 choices to make. Lie or just say "No, I don't actually," either way the story will be re-told.
I feel like I should document everyday of my life just so I can remember it happened. I wonder how will I be in my old age? Only God knows!
Friday, April 22, 2011
What you need to know about me...
- I was born in Brooklyn, NY (whoop, whoop!!! lol)
- I am Haitian-American
- Diagnosed with Lupus when I was 14; December 1998 (Merry Christmas to ya!)
- Medication for the Lupus messed up my hips, got both of them replaced, one in 2000 the other 2001.
- My kidneys took the hit of the lupus and had to do dialysis
- Was on dialysis for 5 years before I got my kidney transplant in April 2008
- Now dealing with this virus that's in my kidney =/ {BK virus}
A day in the hospital
Hi reader,
My name is Samanta. I felt like blogging today because I'm not in the happiest mood right now. I am in the hospital getting an infusion for a virus that I have. I know right, YAY!!!!! -_- Even though this is an outpatient procedure, I still feel some type of way. Maybe that is due to the fact that I am here alone, while my sister told me she's going to sleep in the car....thanks! I feel like crying because I've been in and out of hospitals since I was 14 and I am now 27. Don't get me wronged, I am truly blessed because when I was younger I was in there a lot! No tears.
I'll tell you about this infusion I'm getting today, it's for this virus I have called the BK Virus. Ask me what it is and I wouldn't be able to tell you. I know you're thinking I should ask but I'm at a point of not caring anymore. I'm getting an anti-viral solution through IV, which I just found out today while here that it's going to take 3 hours (an hour for hydration, then medicine, and hydration), so just imagine the kind of face you would make not knowing what to expect. I mean I didn't have any plans for today but still, give people the full details so they can plan accordingly, smh. I feel bad because my sister is here, we're pretty much in Atlanta an hour away from where we live. I told her she could go if she had things to do, she went to the bookstore.
I had asked her to take me because I let my younger sister use my car and I didn't know how this treatment was going to make me feel, after today I'll have a better understanding of what to expect. Oh yes, I have 2 more treatments after this, two weeks apart from each other. I guess that's it for now, thought I had more to say. Any questions for me, feel free to ask!
God bless!
My name is Samanta. I felt like blogging today because I'm not in the happiest mood right now. I am in the hospital getting an infusion for a virus that I have. I know right, YAY!!!!! -_- Even though this is an outpatient procedure, I still feel some type of way. Maybe that is due to the fact that I am here alone, while my sister told me she's going to sleep in the car....thanks! I feel like crying because I've been in and out of hospitals since I was 14 and I am now 27. Don't get me wronged, I am truly blessed because when I was younger I was in there a lot! No tears.
I'll tell you about this infusion I'm getting today, it's for this virus I have called the BK Virus. Ask me what it is and I wouldn't be able to tell you. I know you're thinking I should ask but I'm at a point of not caring anymore. I'm getting an anti-viral solution through IV, which I just found out today while here that it's going to take 3 hours (an hour for hydration, then medicine, and hydration), so just imagine the kind of face you would make not knowing what to expect. I mean I didn't have any plans for today but still, give people the full details so they can plan accordingly, smh. I feel bad because my sister is here, we're pretty much in Atlanta an hour away from where we live. I told her she could go if she had things to do, she went to the bookstore.
I had asked her to take me because I let my younger sister use my car and I didn't know how this treatment was going to make me feel, after today I'll have a better understanding of what to expect. Oh yes, I have 2 more treatments after this, two weeks apart from each other. I guess that's it for now, thought I had more to say. Any questions for me, feel free to ask!
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| Me with the IV in my arm |
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