Well I went to my Dr's. On Friday to refill my medications and talk to him about my pain.
And let's just say it wasn't what I wanted to hear .
My lupus has gotten worse and he has diagnosed me as disabled
I can't walk or move everything is swollen, my lower right flank is sending a shooting pain up my back that knocks me on my butt and sometimes it is on both sides . I can't walk normal anymore, the zombie walk is my normal most days
(someday's there are days i can move slowly but look sorta normal . )
My Muscles are non existent at times and by this I mean I can't hold a fork , get dressed, tie my shoes , or go to the bathroom by myself . I need help to walk. This is something that has been going on regularly for about a few months . This could be caused by numerous things It could be my kidneys for the side pain or from laying on that side when sleeping , degeneration in my body due to my MS starting ,Etc. There is so many things that could be going wrong .
I asked about my life span and based off how i am now what he thinks my diagnoses was
His answer . I may only have 3 yrs left before i pass on . Now this is not set in stone because a lot can happen from now I can go into remission or i can get worse .
I did not want to hear this. But I know he is sorta right. I mean I am so exhausted all the time , fatigued from pain that i am forced to sleep. My body just shuts down and all i can do is sleep which has thrown my sleep pattern completely off.
My pain is a lot worse at night and it keeps me from sleeping. I have been taking Ambien at night. I have had some good results so far only woken up a few times due to pain but able to manage better and fall asleep for a few hours at a time .
But I can't be dependent on this for the rest of my life can I?
I am beginning to forget even the simplest things and have to be told over and over again what is said .. It's hard for me to remember I have to put so much energy into it.. I am told this is called Lupus Fog.
Doing things on a daily basis can be very challenging for me .
Laundry is a 30 min chore and then i have to rest again before I start something else (if i am lucky enough.) Lifting anything makes me have to stop and catch my breath , walking
(when I can) is torture and i refuse to sit in the mobile scooter available so I just stay home most days . I can't use a cane because I can't hold on to it .
I am ONLY 40 . I am not supposed to feel like this I am still Young . It makes me Cry !
Luckily my Husband and Kids Understand this and They help A LOT.
My husband would rather do it all then me try to do anything that is going to make pain worse . But I have to try and he understands and is supportive .
Eating is not something I look forward to ..
Lets just say that some days I don't eat anything but a bagel with cream cheese .
I can tear it apart and eat bit by bit without being sick .
I am nauseous all the time from medications and i would rather not be sick with a full meal in my stomach If you know what i mean.
My pain is way too much for me to handle. I have never felt the way i feel daily.
Not even after labor or any surgeries. Its getting harder and harder to be happy and much easier to slip into depression and just the thought of ending it all is a constant on my mind . I should not feel like this and it's not something I would do but to hope that I die in my sleep is not something I don't think about daily.
I am loosing out on my life and I hate it.
They have no cure for this horrible disease and it is taking it's toll on my body rapidly .
Everyday i think what did i do to deserve this ? Why me? It's a always emotional breakdowns every day . I can't maintain any kind of function(if i am lucky) without my medications .
I had to go a few days before my husband got paid to get them and it was such hell. I pawned jewelry to get the money so i could .
I can't ask my family for anything without a fight. My Mom is the exception to be honest i would rather pawn my stuff then ask them anyway .
Let's just say I am the daughter they don't like I don't know why or what i did .
I have only asked for help a few times and it always backfires and I am always told it's what i deserve .. I put myself in the situation etc .. something negative .
Some would say that I have pushed them away . And you know what, I have and been given good reason too. When you go visit and your dad leaves the room when you get there and doesn't come back until you are gone . Do you blame me ?
My kids are no longer sad when there grandfather wants nothing to do with them and when they go to hug him he moves, but he is all over the other grandchildren.
Doesn't attend your sports events or takes other grand kids to Jazz games ,baseball games etc. (not just the kids but the other adults too . ) I don't know if it's because My husband and kids are quarter black? To which my father told me I wouldn't last 2 years in my marriage at the beginning . I mean seriously I have been married for 22 yrs and he treats me like a queen . It's not always perfect but what marriage is ?
Anyway, I have had countless therapy sessions for this and it's just easier I stay away .
Sorry I went off on a Tangent .....Anyways my point was You Know the pain is bad when I have to pawn my stuff to get my medication.
So many people think that this is an over exaggeration on how this disease is and I constantly have rude comments thrown at me sometimes from the people who should be there for me , sometimes from strangers, etc
There are a few people that think they need to comment without knowing my facts.
Have never been to any of my appointments and don't know a thing about me or how this is effecting me.
I need to shut these people out of my life and just move on I don't need to justify or prove to anyone that I am sick.
It has gotten so bad that these people think I am Making it all up and it's my only focus in life ?
Well When I am disabled and can't do anything on my own it is a bit.
My family is my focus in life and I know how it is effecting my kids so yea it's a bit of focus ..
Does it hurt me ? Yes
I can't dwell on it because it only causes more pain to me and i am the one who has to deal with what happens . I know easier said than done .
My mom who Has Sjogren's disease she understands , she gets it, she has pain and sometimes the same symptoms happen to her, but she knows that it's all different with this disease for everyone.
My Goal now is to just TRY to make the most of my days.
Update on Medication-
I am on a new pain medication, I can move a bit and stand to do things for an hour but that is my cut off time and I have to rest because my body still shuts me down .
I can't do things alone anymore though so someone is always with me except when i am home alone and then I don't push myself and rest when needed .
I have only taken this for a week now but so far the results seem manageable ..Crossing fingers ....
I am ending it on that note but as always thank you so much for taking the time to read my blog .
As always Keep Fighting and stay strong.
MISTY
And let's just say it wasn't what I wanted to hear .
My lupus has gotten worse and he has diagnosed me as disabled
I can't walk or move everything is swollen, my lower right flank is sending a shooting pain up my back that knocks me on my butt and sometimes it is on both sides . I can't walk normal anymore, the zombie walk is my normal most days
(someday's there are days i can move slowly but look sorta normal . )
My Muscles are non existent at times and by this I mean I can't hold a fork , get dressed, tie my shoes , or go to the bathroom by myself . I need help to walk. This is something that has been going on regularly for about a few months . This could be caused by numerous things It could be my kidneys for the side pain or from laying on that side when sleeping , degeneration in my body due to my MS starting ,Etc. There is so many things that could be going wrong .
I asked about my life span and based off how i am now what he thinks my diagnoses was
His answer . I may only have 3 yrs left before i pass on . Now this is not set in stone because a lot can happen from now I can go into remission or i can get worse .
I did not want to hear this. But I know he is sorta right. I mean I am so exhausted all the time , fatigued from pain that i am forced to sleep. My body just shuts down and all i can do is sleep which has thrown my sleep pattern completely off.
My pain is a lot worse at night and it keeps me from sleeping. I have been taking Ambien at night. I have had some good results so far only woken up a few times due to pain but able to manage better and fall asleep for a few hours at a time .
But I can't be dependent on this for the rest of my life can I?
I am beginning to forget even the simplest things and have to be told over and over again what is said .. It's hard for me to remember I have to put so much energy into it.. I am told this is called Lupus Fog.
Doing things on a daily basis can be very challenging for me .Laundry is a 30 min chore and then i have to rest again before I start something else (if i am lucky enough.) Lifting anything makes me have to stop and catch my breath , walking
(when I can) is torture and i refuse to sit in the mobile scooter available so I just stay home most days . I can't use a cane because I can't hold on to it .
I am ONLY 40 . I am not supposed to feel like this I am still Young . It makes me Cry !
Luckily my Husband and Kids Understand this and They help A LOT.
My husband would rather do it all then me try to do anything that is going to make pain worse . But I have to try and he understands and is supportive .
Eating is not something I look forward to ..
Lets just say that some days I don't eat anything but a bagel with cream cheese .
I can tear it apart and eat bit by bit without being sick .
I am nauseous all the time from medications and i would rather not be sick with a full meal in my stomach If you know what i mean.
My pain is way too much for me to handle. I have never felt the way i feel daily.
Not even after labor or any surgeries. Its getting harder and harder to be happy and much easier to slip into depression and just the thought of ending it all is a constant on my mind . I should not feel like this and it's not something I would do but to hope that I die in my sleep is not something I don't think about daily.
I am loosing out on my life and I hate it.
They have no cure for this horrible disease and it is taking it's toll on my body rapidly .
Everyday i think what did i do to deserve this ? Why me? It's a always emotional breakdowns every day . I can't maintain any kind of function(if i am lucky) without my medications .
I had to go a few days before my husband got paid to get them and it was such hell. I pawned jewelry to get the money so i could .
I can't ask my family for anything without a fight. My Mom is the exception to be honest i would rather pawn my stuff then ask them anyway .
Let's just say I am the daughter they don't like I don't know why or what i did .
I have only asked for help a few times and it always backfires and I am always told it's what i deserve .. I put myself in the situation etc .. something negative .
Some would say that I have pushed them away . And you know what, I have and been given good reason too. When you go visit and your dad leaves the room when you get there and doesn't come back until you are gone . Do you blame me ?
My kids are no longer sad when there grandfather wants nothing to do with them and when they go to hug him he moves, but he is all over the other grandchildren.
Doesn't attend your sports events or takes other grand kids to Jazz games ,baseball games etc. (not just the kids but the other adults too . ) I don't know if it's because My husband and kids are quarter black? To which my father told me I wouldn't last 2 years in my marriage at the beginning . I mean seriously I have been married for 22 yrs and he treats me like a queen . It's not always perfect but what marriage is ?
Anyway, I have had countless therapy sessions for this and it's just easier I stay away .
Sorry I went off on a Tangent .....Anyways my point was You Know the pain is bad when I have to pawn my stuff to get my medication.
There are a few people that think they need to comment without knowing my facts.
Have never been to any of my appointments and don't know a thing about me or how this is effecting me.
I need to shut these people out of my life and just move on I don't need to justify or prove to anyone that I am sick.
It has gotten so bad that these people think I am Making it all up and it's my only focus in life ?
Well When I am disabled and can't do anything on my own it is a bit.
My family is my focus in life and I know how it is effecting my kids so yea it's a bit of focus ..
Does it hurt me ? Yes
My mom who Has Sjogren's disease she understands , she gets it, she has pain and sometimes the same symptoms happen to her, but she knows that it's all different with this disease for everyone.
My Goal now is to just TRY to make the most of my days.
Update on Medication-
I am on a new pain medication, I can move a bit and stand to do things for an hour but that is my cut off time and I have to rest because my body still shuts me down .
I can't do things alone anymore though so someone is always with me except when i am home alone and then I don't push myself and rest when needed .
I have only taken this for a week now but so far the results seem manageable ..Crossing fingers ....
I am ending it on that note but as always thank you so much for taking the time to read my blog .
As always Keep Fighting and stay strong.
MISTY
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