This is what it has come to...I have Medicare A & B, seperate drug insurance, supplemental insurance. I think that is about it...but when you add it all up, wheew! I probably should've stayed on my husband's insurance. IDK, things change from day to day. I worry about everything, everyday or at least that's how it seams. My medication can be so pricey that I would stop taking or take less than what I am supposed to take. Everything is so expensive these days...for instance, I stopped taking all of my anti-seizure drugs. I know that it is a bad thing to do. I have to make sure that I stay home all the time. Going out a seizure just can happen. I find that when I am home it is more calm and I make sure to get a lot of rest. Sometimes that's not enough, but I do what I have to. Now I am experiencing dizziness, inability to see what I am reading and then it blurs out to the point where I have to take a second look and have it explained to me more clearly. This is not a good thing, to skip your medication, but I can't say that I don't because I do, financially, it helps me to get through month to month. Unfortunately, I have so many medical bills (which is a lame excuse, but it is life). Food or medicine, that is what it has come down to...and I have a child to care for...I know that my ability to do many things have ceased, but I still try. I definitely pay for it. I can't walk down the block. I can't watch movies. I can't even get down my stairs on certain days. And the others...I can't even get out of bed. But that's life and I have made my own decisions and deal with what I can.
To: Dorie, I'm sorry that you are going thru so much right now. I have fibromyalgia as well. It sounds like you & your husband aren't doing so well. It is hard on our partners to deal with our disabilities. It is the same for me, I depend on my husband for everything. If he wasn't here...I don't know what would have happened?? SSDI can be a long and excruciating matter. It was practically two years in one month! When, I finally got it!! I was really scared before my hearing as well. I didn't know what we would do if I didn't win. I prayed a lot. My husband took off work to come with me to my hearing. Your attorney will come with you. Be prepared to answer questions...in case the Judge asks you directly, which I assume he/she will. Your attorney will prep you for your hearing. Or at least that's what they are supposed to be doing. The only advice I can give you is to be honest. The other advice about your marriage...I would open a seperate account. You can keep it at the same bank or a different one, but make sure it is only in your name. You should do this way before your hearing. If and when you get approved. Then ask for your disability check to come through your bank automatically. Make sure your attorney knows this as well. This is just some preparation for your future. I guess that's all I can really offer to you. Good luck and I wish you the best.
Showing posts with label Scared. Show all posts
Showing posts with label Scared. Show all posts
Monday
Family?
I flew out, last minute, on a whim to meet my other half...I never really knew my father's side of the family, nor did I really know him. I bring nothing with me and just hop on the plane. I call my friend to pick me up from the airport. The stress alone...almost did me in.
I met my grandmother, it is like a long lost memory, that I just plucked from a flower. She is very old now. My grandparents raised me for about 5 to 6 years, while my parents, who knows what they were doing, dumped me there and picked me up - as if I was dropped off at daycare, but 6 years later. The last time I saw my grandmother was about 15 years ago. The last time I spoke to her was about 21 years ago. I was an emotional wreck. I decided to stay with her, only for one night and day. It brought back emotions and memories that have been long stored away. Feeling like I found a piece of my heart. It was very emotional for two of us. The biggest problem we face now is the language barrier. I used to speak her language and she used to speak mine. Since we haven't talked to each other, we stopped speaking each other's language.
I've asked her to come and visit me and possibly let me care for her, at the end of her life. But realistically, how can I ask someone that I haven't seen in so many years to pick up and leave? The rest of her family and friends are where she lives. But they don't physically care for her. She lives alone in a small apartment, part of a senior center home [imagine "In her Shoes" with Cameron Diaz]. But she acts so strong, she can walk on her own and make her own food still. As we spent more time together, I find that no one massages her aching hands and feet. No one helps her groom her nails. I felt so overwhelmed by the need to take care of her, as she did me. Of course, I didn't even ask my husband, but I sent her a letter that I translated into her language asking her to come and visit [at least]. I miss her now that I have found her. I don't even know how to describe my feelings about it.
I find that my cousins, her grandchildren, don't spend any time with her, but see her maybe once or twice a year. They consume all of their time on becoming that successful doctor. One of her three daughters take on the responsibility for caring for her. I feel that she is somewhat lonely, but she spends a lot of time at the Senior Center.
When my mother's mom got old, we didn't put her in a home, one of my aunts took care of her at her home until she passed away two years ago. I guess it is part of our culture to take care of our elders. How much longer can they live? This is like when we were a baby, who cared for us? Our parents. As our parents get old, who will take care of them? I guess some of us think our children will and some of us just knows that in the end, we might just end up alone.
My grandfather passed away about 20 years ago. So my grandma does not have a companion. Who should care of her?
As I suffer from lupus, my husband and daughter are constantly caring for me. I can't imagine what hardships they both go through for me. But here I am, trying to care for another. I am not sure if I can do anything anymore. I haven't been able to make any decisions without "thinking" it out too much. The confusions as to what I want and may want. I have become a totally different person. I don't think that I could be as strong as my grandma.
I met my grandmother, it is like a long lost memory, that I just plucked from a flower. She is very old now. My grandparents raised me for about 5 to 6 years, while my parents, who knows what they were doing, dumped me there and picked me up - as if I was dropped off at daycare, but 6 years later. The last time I saw my grandmother was about 15 years ago. The last time I spoke to her was about 21 years ago. I was an emotional wreck. I decided to stay with her, only for one night and day. It brought back emotions and memories that have been long stored away. Feeling like I found a piece of my heart. It was very emotional for two of us. The biggest problem we face now is the language barrier. I used to speak her language and she used to speak mine. Since we haven't talked to each other, we stopped speaking each other's language.
I've asked her to come and visit me and possibly let me care for her, at the end of her life. But realistically, how can I ask someone that I haven't seen in so many years to pick up and leave? The rest of her family and friends are where she lives. But they don't physically care for her. She lives alone in a small apartment, part of a senior center home [imagine "In her Shoes" with Cameron Diaz]. But she acts so strong, she can walk on her own and make her own food still. As we spent more time together, I find that no one massages her aching hands and feet. No one helps her groom her nails. I felt so overwhelmed by the need to take care of her, as she did me. Of course, I didn't even ask my husband, but I sent her a letter that I translated into her language asking her to come and visit [at least]. I miss her now that I have found her. I don't even know how to describe my feelings about it.
I find that my cousins, her grandchildren, don't spend any time with her, but see her maybe once or twice a year. They consume all of their time on becoming that successful doctor. One of her three daughters take on the responsibility for caring for her. I feel that she is somewhat lonely, but she spends a lot of time at the Senior Center.
When my mother's mom got old, we didn't put her in a home, one of my aunts took care of her at her home until she passed away two years ago. I guess it is part of our culture to take care of our elders. How much longer can they live? This is like when we were a baby, who cared for us? Our parents. As our parents get old, who will take care of them? I guess some of us think our children will and some of us just knows that in the end, we might just end up alone.
My grandfather passed away about 20 years ago. So my grandma does not have a companion. Who should care of her?
As I suffer from lupus, my husband and daughter are constantly caring for me. I can't imagine what hardships they both go through for me. But here I am, trying to care for another. I am not sure if I can do anything anymore. I haven't been able to make any decisions without "thinking" it out too much. The confusions as to what I want and may want. I have become a totally different person. I don't think that I could be as strong as my grandma.
disturbing...
I went to see my rheumatologist today. I haven't seen him in a long time, well longer than usual. I was given a page long of items that I need to do before I see his nurse practitioner in a month. This week alone I have two appointments scheduled. I guess I didn't think it was a big deal that I had been bleeding or having my period for two weeks. I have been bleeding for quite some time now. I haven't had a period in over four years. I thought I had gone through menopause. My rheumatologist feels that this is a second priority problem. I have a first priority problem, which seems to be hardest to talk about. I am not sure why? So I have to see a cardiologist. So I have to have a full work up of my heart. I had blood slowly drawn from my arm which was nice [because taking it from your ankles is quite painful!]. Then, comes third priority: gasterintologist [sp?]. When one thing goes away...many accumulates? I had a seizure this past weekend, on Saturday. I have been taking my medication and I just don't know what else is left to do. I have yet to tell my husband and daughter. I have requested the time off from my administrator and hope that it won't be a problem. I think that I shouldn't worry until it is a real problem, right?
depressed??
This is nothing new, depression comes with the territory of having lupus. I guess I have had it for a while now...being on a whole cabinet of medications, uppers/downers/happy pills, etc. Who knew there was a pill for almost everything? I don't want to dwell on being sad...but I have made my decision to slow down on my treatment. I have decided to cut back on dosages. I just can't handle any more BAD news right now. Everytime I go to the doctor, it's always bad news. I can tell my body is deteriorating...it's like that feeling in the baground that you know that is happening, but you just ignore it. The odors from when I urinate. Sometimes when I lay down my abdomen hurts. I am not sure if it is my kidney, but it is probably. The urine isn't foaming, but it smells pretty bad. I haven't said anything. I have cancelled all of my appointments with the exception of my cytoxan therapy on Friday, July 13. Am I going to make it worse? Maybe. But I think I am willing to take that risk. My life has been fulled with so much and maybe it is my destiny. I have always been known to be a stong person. I even thought of myself as being strong [does this sound like pride?] maybe. But I am just a regular person, trying to live liife in a body that hates me. I want to be normal, but I am not. Am I so special that life has to be so difficult? I suppose.
The man i loved [or maybe thought I loved] - I finally told him last year that all these years I had reserved feelings for him. I never let him know all these years because I guess I was too ashamed. Back in the day, I knew he was right, he would treat me well and we were like peas in a pod. I think it scared me. I ran the opposite direction. The direction of my husband now. My life with my husband has been tumultous. We have been through a roller coaster of emotions. From having a child in my teen years, getting married & having lupus.
We started wtih nothing, my family rejected the fact that I had a child out of wedlock. But we did ended up getting married. I learned to love him. Although, I don't know how much he loved me. The first year we were together it was good. The second year...well he left me, for another woman. Left me alone with an infant child to raise. I had no idea what i was going to do. He was having an affair with his friend's girlfriend. A girl that I be-friended because I felt sorry for her and kind of obliged my husband to help her. And this is how I got paid back? I was very angry. I was abadoned. Something that was very common in my life is abadonment. When times got hard, I got left behind.
Just like this disease...I feel like my doctors are a step behind what I need. My body is not responding to me, not responding to my medications. My body is trying to abandon me. Why? I ask myself that question all the time. I know that I will never get an answer, but it is something I always wonder about. Will life give me a chance? Will God give me relief?
I worry too much, which could be another factor in my crazy life. Some might say I worry about things that doesn't matter. Which I know [in my head] but in my heart...it is different.
I am so lonely. You might say, how can she be lonely?? She has a family, a full house, extended family, yet I am alone. No one understands what I go through, except for other Lupus sufferers. My family has no idea. I have written various letters, in depth, in length and in detail as I can be, but no one understands. Why? Why can't I just be happy with what I have? I guess because I want more. I want relief. I want not to hurt anymore. I ask for that sleep that I desperately seek from God.
The man i loved [or maybe thought I loved] - I finally told him last year that all these years I had reserved feelings for him. I never let him know all these years because I guess I was too ashamed. Back in the day, I knew he was right, he would treat me well and we were like peas in a pod. I think it scared me. I ran the opposite direction. The direction of my husband now. My life with my husband has been tumultous. We have been through a roller coaster of emotions. From having a child in my teen years, getting married & having lupus.
We started wtih nothing, my family rejected the fact that I had a child out of wedlock. But we did ended up getting married. I learned to love him. Although, I don't know how much he loved me. The first year we were together it was good. The second year...well he left me, for another woman. Left me alone with an infant child to raise. I had no idea what i was going to do. He was having an affair with his friend's girlfriend. A girl that I be-friended because I felt sorry for her and kind of obliged my husband to help her. And this is how I got paid back? I was very angry. I was abadoned. Something that was very common in my life is abadonment. When times got hard, I got left behind.
Just like this disease...I feel like my doctors are a step behind what I need. My body is not responding to me, not responding to my medications. My body is trying to abandon me. Why? I ask myself that question all the time. I know that I will never get an answer, but it is something I always wonder about. Will life give me a chance? Will God give me relief?
I worry too much, which could be another factor in my crazy life. Some might say I worry about things that doesn't matter. Which I know [in my head] but in my heart...it is different.
I am so lonely. You might say, how can she be lonely?? She has a family, a full house, extended family, yet I am alone. No one understands what I go through, except for other Lupus sufferers. My family has no idea. I have written various letters, in depth, in length and in detail as I can be, but no one understands. Why? Why can't I just be happy with what I have? I guess because I want more. I want relief. I want not to hurt anymore. I ask for that sleep that I desperately seek from God.
Thursday
a New day!!
Well I'm kind of excited today. I get to leave work early today to go home and be with my daughter at her school [probably embarassing her] which is more like it. Today is some sort of school event and she will have her last band concert today. Her band teacher is retiring due to her RA [rheumatoid arthritis] something that I know too well. I sent her a lei - in celebration of her new beginning, retirement. I hope she enjoys it. I still need to pick up a card for her and probably give it to her tonight.
Today, I also get to see my Best Friend. She will come out to see Sam's concert and go back to Denver to be with her friend for one more day, then will come to stay with us Friday night until early Tuesday morning. I miss her so much! I got her 30th birthday present, but I wanted to put a more recent picture in the frame I got her so I will take a new one of both of us being trendy, flirty & thirty, ha! I took that from her blog! Although, you could take out the flirty part on my end cause I have a man and no need for more drama in this woman's life, ha!
I did get up early this morning and got a list going of stuff my husband needed to do for my office. I have decided to get moving on some projects instead of leaving them half way done. I tend to do that these days because I get tired. Then I loose all concentration and my health just always [I mean ALWAYS] gets in the way. I needed a break from my health.
This morning, I woke up sweating, feeling like I was being held down. So strange, I was kind of scared. Two nights ago - I had incontinence in a store. I was just browsing around a store looking for a desk in my "official" office. It was quite embarassing. I just threw my panty away [well I wrapped it up several times - like a tampon] and just went bare. I couldn't see out of one eye [yes, I know it sounds really bad], but I was close to home and instead of having my husband come and get me, I just drove home [yes, that is really bad]. Today, as I was driving into work, I literally fell asleep at the wheel, almost hitting a couple of cars as I came out of the HOV lane, people were honking [yes, I was quite embarassed and yes, I know how dangerous that was]. I usually chew gum, but my daughter had taken it out of the car, but that is no excuse. I need to get this thing under control. I have had it with these damn seizures or whatever they think they are?? Now talking about a heart condition, umm...I don't think so. I'm tired of being probed, tested & looked at like some gone bad science project. I just want to be a normal jane for now. I want to be a mother, wife and a loving friend - who doesn't forget everything! I feel like I have suffered a loss [like death]. I need to mourn the fact that I can't be all that and more, anymore. Okay that rhymed, hee:)
I'm super bored at work...been reduced to watching movies and doing word searches. Yes, very eventful. At least today won't be as long because I leave a noon, yeah!
Today, I also get to see my Best Friend. She will come out to see Sam's concert and go back to Denver to be with her friend for one more day, then will come to stay with us Friday night until early Tuesday morning. I miss her so much! I got her 30th birthday present, but I wanted to put a more recent picture in the frame I got her so I will take a new one of both of us being trendy, flirty & thirty, ha! I took that from her blog! Although, you could take out the flirty part on my end cause I have a man and no need for more drama in this woman's life, ha!
I did get up early this morning and got a list going of stuff my husband needed to do for my office. I have decided to get moving on some projects instead of leaving them half way done. I tend to do that these days because I get tired. Then I loose all concentration and my health just always [I mean ALWAYS] gets in the way. I needed a break from my health.
This morning, I woke up sweating, feeling like I was being held down. So strange, I was kind of scared. Two nights ago - I had incontinence in a store. I was just browsing around a store looking for a desk in my "official" office. It was quite embarassing. I just threw my panty away [well I wrapped it up several times - like a tampon] and just went bare. I couldn't see out of one eye [yes, I know it sounds really bad], but I was close to home and instead of having my husband come and get me, I just drove home [yes, that is really bad]. Today, as I was driving into work, I literally fell asleep at the wheel, almost hitting a couple of cars as I came out of the HOV lane, people were honking [yes, I was quite embarassed and yes, I know how dangerous that was]. I usually chew gum, but my daughter had taken it out of the car, but that is no excuse. I need to get this thing under control. I have had it with these damn seizures or whatever they think they are?? Now talking about a heart condition, umm...I don't think so. I'm tired of being probed, tested & looked at like some gone bad science project. I just want to be a normal jane for now. I want to be a mother, wife and a loving friend - who doesn't forget everything! I feel like I have suffered a loss [like death]. I need to mourn the fact that I can't be all that and more, anymore. Okay that rhymed, hee:)
I'm super bored at work...been reduced to watching movies and doing word searches. Yes, very eventful. At least today won't be as long because I leave a noon, yeah!
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