Where to start. It has been a rough couple of days and my symptoms with my
Lupus have taken a turn for the worse. My pain that I felt in my back is gone which is a great thing, But now I am no longer able to put any weight on my
right leg without hellish pain. I can’t walk and if I try I am in so much
pain I can’t breathe. So I have been in bed
not able to move. WTHeck
My husband thinks that because I am laid in bed most days
that my leg is going into muscle atrophy. I mean seriously this disease is cruel when I have enough energy to do anything I can't walk now . Talk about more things that scare me about being sick . I should go
see my Doctor but I know that if it’s part of my Lupus what is there to do besides
pain management? Plus I just saw him a few weeks ago . I guess I should get use to It Right ?
I have been pushing
myself to stand up and walk a bit every hour or as much as I can. I am not
going to lie It frickin sucks so bad, the pain is so intense it’s hard for me to breathe, The pain is so bad that even sitting down it
hurts, to move from a sitting to standing position is hell and when I am up all
I want to do is collapse . I continue with this every chance I get No matter what or how bad the pain is . I start to walk around the room or
even back and forth.
I can’t let this disease win!
The
pain comes and goes I can sit with my legs crossed and feel nothing. I know that
this is bad for me to do so I try not too, but it’s the only way I get any relief.
And it’s not all the time. I would say at least 90% of the day it hurts and
I want to die! The remaining percent is when I am on my pain medication or asleep.
I am going to try to explain my pain.
The pain shoots through my thigh down to my calf .It's a sharp piercing feeling like someone is cutting me from my thigh down . I am unable to put any weight on it and sometimes I shake so much I can't step down because I know I will fall .
It's one of those pains that you can't help but scream or cry every time you move . Once I am up and have put pressure on it for a couple of minutes it subsides but then starts again and you feel like you are going to collapse . The pain makes you so sick you feel like you are going to throw up .
I try not to let my family know how much pain I am in so I down play the symptoms . My husband was watching me walk back and forth one night and he said that It looked normal. But if he only knew how much pain I was in and the agony I was putting myself in He would probably just add that stress to his self and I don't want that . I have started to try to sleep in a sitting up position and it helps a bit.
On
top of being already sad and depressed this does not make things easier.
I got up out of my bed to make sure Mayson got to school,stepped down and fell on my face . this scared my 13 yr. old Camden that he insisted to stay home and lay next to me all day .He was crying so hard that I let him .
I got up out of my bed to make sure Mayson got to school,stepped down and fell on my face . this scared my 13 yr. old Camden that he insisted to stay home and lay next to me all day .He was crying so hard that I let him .
No matter what excuse I told him he would say “Mom I am not a
little kid I know what is going on when we are in the computer lab I research what
Lupus is and I am trying to find a cure because NO One should have to go
through this hell”. Man, That kid stayed by my side Literally , My arm got so
tired from it laying around him that when I couldn’t hold it up anymore he
would hold my hand . He made sure I had something to eat and that my
medications were taken at the right time.
I just couldn’t help but smile that God had blessed me with this kid.
Mayson who is my 10 yr. old is having a hard time with this all. He is so scared
that he is going to come home just to find out I died. I have reassured him that I will be okay but
I can’t promise that. Who knows what could happen and this makes me so
heartbroken. I am not going to lie to my
kids, especially with all the technology available they can find out on their own. Point proven by Camden .
My husband has been struggling with his sleep he has had horrible dreams that I have passed on and I am no longer around and so he tosses and turns all night . This breaks my heart that He has to worry about this kind of thing due to how sick I have been . it's hard to reassure him that i am okay when he can see the damage and the pain in front of him.
(I did end up one night having to go into the ER because I couldn't move and the pain was so much that I just couldn't handle it anymore I was put on morphine for pain and Valium to help ease the muscles in my leg . I had a 104 temp that just wouldn't go down . I also had an Ultrasound done and it came back ok NO BLOOD CLOTS. The diagnoses Either Sciatica or like my husband thought Muscle Atrophy . They don't think it's sciatica because it doesn't shoot down my leg and is only in one spot of my thigh . My Oxygen was so low (it was in the 75 range) so I had to be put on Oxygen and because it would not go up but kept going down That meant a Hospital Stay for me !
I was okay with that because I was on Morphine and really couldn't feel any pain and was able to sleep . I was told that i should talk to my Doctor about being put on oxygen at home . So when I see him again I will ask .
On a happier note My skin looked amazing and my nurses could not believe I was In my 40's. At one point I was asked if KJ was my husband ...)
Lonnie did not go with me this time because he was exhausted from work .
So KJ took me and stayed with me Even though I told him to go home and rest. He just layed on the floor and went to sleep . Chairs were not comfortable .
Speaking of my son .
(I did end up one night having to go into the ER because I couldn't move and the pain was so much that I just couldn't handle it anymore I was put on morphine for pain and Valium to help ease the muscles in my leg . I had a 104 temp that just wouldn't go down . I also had an Ultrasound done and it came back ok NO BLOOD CLOTS. The diagnoses Either Sciatica or like my husband thought Muscle Atrophy . They don't think it's sciatica because it doesn't shoot down my leg and is only in one spot of my thigh . My Oxygen was so low (it was in the 75 range) so I had to be put on Oxygen and because it would not go up but kept going down That meant a Hospital Stay for me !
I was okay with that because I was on Morphine and really couldn't feel any pain and was able to sleep . I was told that i should talk to my Doctor about being put on oxygen at home . So when I see him again I will ask .
On a happier note My skin looked amazing and my nurses could not believe I was In my 40's. At one point I was asked if KJ was my husband ...)
Lonnie did not go with me this time because he was exhausted from work .
So KJ took me and stayed with me Even though I told him to go home and rest. He just layed on the floor and went to sleep . Chairs were not comfortable .
Speaking of my son .
Khrystian is 18 and has put his football dreams aside to
help out with the family .I am no longer able to work and also help ease my
husband’s stress of being the only provider .
He has told me that helping his family is more important. We did not ask him to do this he just has and I am blessed to have him in my life.
He has told me that helping his family is more important. We did not ask him to do this he just has and I am blessed to have him in my life.
He is trying so hard to find that girl that is meant for him
but girls now a days are bitches, not all, but the ones he has dated. They will
talk to him on the phone but after the first date they make up some excuse as
to why they can’t date him.
Some are just plain mean, like he met this girl who
he was honest with after the first date she kissed him and he didn’t feel like
there was a connection. so he was honest and told her that he couldn’t be
interested in her romantically but that they could be friends. I mean seriously
if you kiss a girl , and it feels like you are kissing your sister . that is not a
connection you want to have.
She slandered him saying he was an asshole, mama’s
boy, he lives at home and he is a looser, and that he is so shallow that he
wanted to date a model. Etc. . . .
The
kid has a good heart and would never judge you on the way you look he was
raised better than that.
He didn’t take one second to tell her that he stays at home
with us to help out because his mom is chronically ill with Lupus and if that
makes him a mama’s boy then so be it. It made me cry...
Now honestly I would have given money to have a guy tell me
how he really felt then lie, cheat and hurt me. Is that not what girl’s want
now a days?
Sorry, I went off on
a tangent!
Talking about what I could do to make me happy most days it’s not getting dressed and going out, I am making sure that I am
doing my skin care routine and makeup.
This is something that I have been finding
helps me a lot. I am just happier when I look in the mirror
I have been
doing this lately even if my makeup is only on for a few hours.
I ordered some more of my favorite skincare brand Dermalogica
and can’t wait for it to get here. I ordered some of the products I have run out of and some new ones to try ..
I
have also purchased some new makeup palettes that I was eyeing for a bit
(Sad to admit. I didn’t want to buy anything, so many of my Lupus friends were passing away that i felt like I was going to die too. so what is the point?)
I still feel like that some days. I mean, who wouldn’t, especially now where I
can’t walk, sit or sleep without help and the pain is so intense I wish for it . Again like I said I have NO tolerance to pain so you can imagine what i deal with ..
I have tried to make my daily goal! Skin Care Makeup if I am lucky . I was so frustrated with the rash I got that I wasn't doing my daily skin care routine . If I am going to be
in pain I may as well look pretty good doing it. LOL.
Also this is something I
can do sitting down so why not? Plus I feel so much better after .My husband aslo made me pull myself out of bed and get my hair done.
So i took Jayedyn and he dropped us off at Cameo College of Essential Beauty this is where I graduated for Master Esthetics . And 5 hrs later it seemed .Me and the girl had some beautiful hair Mine was simple It was Jayedyn's that took forever ..... She wanted burgundy , maroonish colors through out so of course this took hours with her Long , Beautiful locks.
I added just a few Mocha Highlights mixed in with my regular blonde hair so when I pull it up it looks like it was melted in...
For Jayedyn's first hair color she wanted reddish strips
Let's talk Makeup !!!!!
I have purchased the Tarte- Tartelette in Bloom palette.
The
Tartelette Tease -mini palette (It's so cute I just had too!)
The It Cosmectics- Viatality lip gloss ..Love Love this stuff and a Foundation brush. Haven't used it yet so we will see how it works ...
The Too Faced Peanut Butter and Jelly palette is one I had to have and when I got the chance to pre-order it I jumped on that no second thoughts . The colors are beautiful a bit on the warm side so I will have to see what looks I can come up with....
The It Cosmectics- Viatality lip gloss ..Love Love this stuff and a Foundation brush. Haven't used it yet so we will see how it works ...
The Too Faced Peanut Butter and Jelly palette is one I had to have and when I got the chance to pre-order it I jumped on that no second thoughts . The colors are beautiful a bit on the warm side so I will have to see what looks I can come up with....
I am still debating if I want the Too Faced Chocolate Bon Bon’s
palette?
Has anyone used it? I would love to hear your reviews. Or is there your must have palette that you
think I should get Let me know in the comments below.
As always keep fighting and stay strong
I hope that we can all defeat the depression we feel, as well
find a cure for this horrible, horrible disease.
Love ya all,
Misty
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