Are you ready! Yes it is finally here! More ramblings of my
unique yet ordinary life.
So Christmas has come and pass, and we honestly did not
think that it would happen at all this year. But it did. So many friends helped
us out and the kids said it was the best Christmas ever! We were so worried at
the beginning of December because we knew that we would only have enough money
for the necessities. But look, God came through, yes Christmas is not all about
gifts, I know that and I teach my children that, but I was so happy to see all
their smiling faces when they were opening gifts. The house was a wreck, but we
just let them play and enjoy the time. Sometimes you just need to let kids be
kids, and Christmas is one of those days that we just say, forget about
everything!
Speaking of Christmas, here comes my part about Dystonia,
yes I am going there ha ha. A good friend of mine did something very special
for our family. She heard about the tough time we were having and came to the
house with a special delivery. Gifts for the whole family, so sweet! I just
about cried when she showed up and I was very happy.
Later that day I received a message from her, she was
wondering if I was angry and upset with her because she and others got together
to get gifts for us. Of course I was not. Well here is the part about Dystonia
I think I despise the most, my facial expressions. Because of the low dopamine
levels, it affects my facial expressions. My eyes do not smile like they used
to when I am happy. And sometimes my smiles look very forced. Well, because
they are ha ha. Not because I want them to be, but because my facial muscle
just will not do it all the way. You get kind of a masked face, similar to what
happens in Parkinson’s disease.
Before I knew what was going on with me, frankly for several
years. I always wondered, I mean I knew I was stiff, but I wondered why so many
people would think I was so high strung or stressed out. When I was diagnosed I
read about the masked face, and it was due to my dystonia. I always wondered
why in some home videos and even in some pictures, when I was happy and thought
I was smiling nicely it did not look that way, I looked kind of like a blank
person. I think sometimes its is worse than other times. Dystonia, particualry
Dopa Responsive Dystonis has so many symptoms because for me it affects my
entire body. So even just showing your emotions can be hard. I have been picked
at so many times by co workers thinking I was stressed out when I was not, or
nervous because I was stiff, had a blank face and sometimes shaking. I remember
one particular incident where a co worker (who was not very nice) stopped me
and said “Dawn, you need to relax and calm down”. I tried to tell him that I
was not stressed out at all. I remember coming home and just cried so hard
because it hurt. I was so tired of people assuming I felt one way when I really
did not and I could not understand why my body was doing what it was to me!
There have been times my kids think I am angry or upset as well. But now that
we know what is causing it, they don’t think that as much HA HA, they do still
ask me to make sure from time to time.
Yes I am on medication that helps, but I have done some
reading and it stated that if you go a long time without dopamine treatment, the
facial expression part may remain, ie the blank face. This makes me sad because
as human beings we use body language a lot. And not being able to show the
proper facial response makes it hard for people to see how I am feeling. They
either think I am upset, not happy or when it is something serious that I
really don’t care because I just have that strange blank gaze. I really hope in
time that this changes. And there are somedays that it is not like that. I can
only hope at this point right.
I have been dealing with a lot of sadness lately, and maybe
Christmas had a little to do with that. Yes all my children were happy, we have
plenty of food and a roof over their heads. But now that I am not working, we
are so broke! I go to so many doctors appointments and have to pay for so many
co pays that it is literally draining us dry. I know I have to go to the
doctor, but I have considered just not going because it is such a hardship on
us right now. I have so much guilt about all of this, even though none of it is
in my control. I have guilt because my husband is very stressed about finances.
Like I said now one is suffering, but we literally don’t have anything left for
anything extra. I know all the kids understand, but I really hate telling them
no to things sometimes. I hate saying things like … “we don’t have the money
for this… “, “I don’t have the gas money to drive here…”
For instance, the girls received gift cards for cloths from
their mom for Christmas to go shopping at the mall. They each had 100 dollars
for cloths. Normally if my children when over by a few dollars I could pay the
difference. But now I do not, so I had to calculate up everything they wanted
to include tax so that they would not be embarrassed and have to put stuff
back. Another sad thing is my boys went shopping with us, and they had to watch
them buy all new stuff and I could not buy anything for them because I did not
have the money. My older son
understood, but little Adan did not, he kept asking and asking and I kept
telling him I did not have the money. And he said, “But Hosanna and Grace are
getting to buy new stuff.” Don’t think that I did not get happiness out of
taking the girls shopping, I though it was so nice their mom did that for them,
and they did need more jeans. But it breaks my heart when I can not do the same
for all of them.
Now don’t think Adan does not have cloths! My friend that
made that delivery gave him so many cloths and they were so so nice! Yes they
were used, but you could not tell and Adan was so happy to get them! He has
been trying new outfits all week LOL. But I guess its just the fact of
shopping, of course he is going to want to shop too when he sees his sisters
doing it LOL. I think next time I will just take them, that way I do not have
to feel bad for Adan, even though I know he has everything he needs and nice
stuff. He did receive a brand new pair of shoes from the church, and he was so
excited when he got them! He had been wanting a new pair of converse for a
while lol. I normally get all of our stuff at thrift shops, but I know its nice
to have something like new shoes every now and then. Me, I love getting cloths
given to me and from thrift shops LOL you can find really nice stuff, and I
have received really nice cloths. I am definitely not in any need lol
So yes I have been sad. But I know eventually all this will
be better and things will get better, we just had a lot of stuff hit us all at
once.
I had to stop working because my Dystonia reached the point
I had to stop working and figure it out! I could not walk without a cane, I
could not use my hands due to tremors, I could not talk clearly and I would
choke when I ate, Just to name a few symptoms. My body felt like I was
turinging into a trembling stiff statue! So then why to I feel guilty? Because!
I love working and I get joy out of providing to my family! I used to go and
get each of the kids something special all the time, or I would decided to have
a movie night and get all kinds of candy, chips, popcorn and etc. and make it
super fun! I once went and bought grace a bunch of baking supplies and pans
from the dollar tree for her to practice baking! I hate not being able to do
that right now! ARRRRRGGGGGGGGG
But I can do other things with them, like I am here everyday
when they go home. Adan loves that! I am not so exausted and such from work. I
have more time for them and my husband. And they love that I can cook more now
LOL Well Grace likes to cook as well so she does some of that. I just let her
do what ever she wants! She looks and recipe books and makes stuff up, I think
that is so sweet. So I have to focus on all the good things.
Yes I am tired a lot, but I get most of my rest in while
they are at school. And now since it is break they sleep in and so do I. They
are all very understanding though, they know I am trying to get used to all these meds.
About my meds, some days I am symptom free, and well some
days I am not. Some days I am in horrible pain, but that is most days and I am
used to that. Yesterday I had tremors and my neck and legs and back were
dystonic, and it sort of frustrated me because I just want to be normal again. But
I have my family and that is what matters the most of anything! They all love
me and they seem, and say they are very happy!
I guess this is it for now, I will get through all of this!
My doctor says I will need to at the very least be on temporary disability for
a while so I can get all the care to get better. Physical Therapy, biofeedback,
pain management and counseling to deal with having a chronic illness, I don’t mind
any of it. But I really wish Duke would approve my charity care to at least
cover the co pays because going to the doctors every week adds up. I have a
lidocain infusion procedure next week and I have to go to PT. But I am worried
how much the co pay will be for the infustion, and if I will have enough money
to pay for the PT co pays AHHHHHHHH
Yep you guys, you got to hear me truly vent! This is just
how I feel, and I am an honest person. Some people say I am strong, but
remember everyone has to grieve and that’s what I am doing. I have been dealing
with it better the past couple of days in regards to coming to terms with all
of this and accepting it. Its funny, I thought I would be happier just knowing
what I have. And now that I do, I am like wow… just wow… seriously… I lost my
career… my dream…. I worked so hard for!
But life is more than that, I have my family… and frankly
things could be much much worse!
Have a wonderful blessed week everyone! And wow did it feel
good to vent LOL
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