Recently I got a Vectra Da blood test done on request of my
wonderful rheumatologist. A Vectra D or as I’ll call it VD, is a way to
determine how your disease activity is. VD tends to be the preferred blood test
for RA because it measures 12 markers of RA unlike the C-reactive protein (CRP)
and Erythrocyte Sedimentation Rate (ESR) test that only measures one marker.
When you have RA it’s important for you to know your RA
number. Your RA number determines what level you fall on under level of disease
activity. In my case my number is 45 which means my disease level is high. When
it is high, symptoms tend to be more severe and a high level can mean an
increased risk for future joint damage.
Even though I’ve just now been diagnosed with RA, I’ve
always suspected I had it. I began having joint pain at the age of 5 and I
remember notifying my family that my joints were in a lot of pain. Back then, I
guess my family didn’t think anything of it. As my joint pain continued as I
grew older and into my pre-teen years I brought up the pain to my physician at
the time and he said that it was just growing pains.
As I heard this, I knew it wasn’t true. When I got into high
school my pain worsened and particularly affected my wrist the worst. At this
point I seeked help and began seeing a rheumatologist. Knowing that my
grandfather had RA, my rheumatologist did an RA blood test to see if I had an
RF or rheumatoid factor. It came out to be negative back then.
When my wrist pain became so severe it was hard for me to
write in school. I struggled with this because I was in Advanced Placement
classes and with AP; there are a lot of notes.
My pain was so severe one day that I decided to go to the
nurses office at school to get something to dwell the pain so I could bring
myself to write. The nurse when hearing upon the fact that I had wrist pain was
very rude. She said that I needed to suck it up and when she said that, she
showed me a little cut she had near her arm that was by her wrist and said
“Look what I have, this hurts and I still do my work.”
I just nodded my head and went back to class. It made me
upset that she compared what she had to what I had. Hers what simply a small
cut that would eventually heal and mine was pain that I had endured all my life
that was getting worst and had no answer as to why. It also made me upset at
the fact that she said “Suck it up.” I do suck it up, I have dealt with health
issues all my life and I only might mention about pain when it is very severe.
I have a high pain tolerance so when I do mention about pain it’s really bad.
Now that I do have a diagnosis as to what caused the pain, I
really wish I could go back to my old high school and tell the nurse, “It turns
out the pain was caused by a disease that attacks my joints and tissues, do you
have a disease that attacks your body constantly?” I really wish I could do
that.
The school nurses at my high school always thought I was
faking being sick since I was in there so often. At one point they even asked
me, “Do you just not like school?” I then replied “No, I love school, I’m just
always sick.” They pursed their lips and said “You know if you keep missing
school, you aren’t going to graduate.”
This really made me upset because I didn’t fake being sick,
I was sick. I also was going to graduate and even though I was behind on my classwork
due to being in and out of school due to illness, I was going to do it. As you
can see the nurses at school and I didn’t have the greatest relationship ever.
Living with Rheumatoid Arthritis has been difficult but it’s
just part of my life. There are days when I’m constantly in pain and even the
slightest movement is dreaded. I feel very fatigued a lot as well. People
usually compare being tired by using the word fatigue. Fatigue is a whole other
level, it is nothing compared to the word tired. With fatigue, I can’t even
move. I don’t have the slightest energy at all and it takes a lot of energy for
me to get out of bed in the morning due to that fatigue. I also get a lot of
fevers due to RA and so I constantly need to check my temperature.
Asthma. Asthma is something I have been dealing with my
entire life. People tend to think that asthma just causes difficulty breathing
fixed by an inhaler but that’s not the truth. For me, my asthma is hard to
explain but to put it in the best way, it’s like I’m breathing through a Capri
Sun straw. I use Capri Sun straw since those straws tend to be very narrow.
For me, Asthma hasn’t just caused difficulty breathing but
has caused constant severe lung infections several times throughout the year
every year since childhood. I have tried numerous medications but no matter
what my Asthma still finds its way to deliver me presents called lung
infections.
I constantly get severe bronchitis and pneumonia which
usually leaves me having to either being admitted into a hospital or being home
ridden for long weeks or months at a time. I also get constant sinus infections, cough, and mucus build up.
As I type this I am currently enduring bronchitis and have
been given an injected steroid along with antibiotics, cough suppressants,
nebulizer medication, and more steroids.
I have also been checking my peak flow lately and I am in
the red zone. Usually Asthma patients will have a peak flow meter and a peak
flow meter is used to determine your asthma severity at times. To use a peak
flow meter, one must blow as hard as they can into the peak flow to determine
what zone they are in. Green zone means you are good and where you need to be,
yellow zone means you need to take caution because your asthma is acting up, and red zone is really bad and means that you need to seek medical attention
immediately.
Therefore, after taking my peak flow several times and being
very low on the red zone area my mother suggested going to the hospital since
that is what one should do when in the red zone. However, I was reluctant
because I was pretty sure that if I were to go, I would be admitted. Therefore,
we went to an urgent care instead.
The doctor there didn’t seem to know much on the peak flow
meter but he did give me a breathing treatment and prescribe me multiple
medications. It was quite funny because the medical assistant who took my
vitals suggested I had the flu and had absolutely no idea what a peak flow
meter was and seemed to not know very well what having Asthma entails. She
basically implied that Asthma only causes difficulty breathing and not any of
the other symptoms. I then had to explain to her what Asthma entailed and what
a peak flow meter was, but I don’t think she quite understood.
Now, I’m going to steer towards talking about life and
family in general for the rest of this post.
Mom. My mom is honestly the best mom I could ever ask for.
She is always there for me and if I didn’t have my mom, my experiences with
illness would be so much more difficult. She is my life line, and without a
life line you can’t live. She has been extremely supportive through everything
and even though at times she gets frustrated and breaks down, I am so glad I
have her. I can’t even put into words on how much I admire my mom for being
such a strong woman.
Dad. My step dad who I am now going to mention him as Dad is
a blessing. Even though he and I argue often, I love him so much and I am
eternally grateful for him filling the void I had in my life from not having my
biological father. He has shown me what it’s like to have a father and he has
been there for me through thick and thin and even though I don’t have part of
his DNA, he is my Dad and he is the best dad I could ever ask for.
Grandma. My grandma is my second mom. She helped raised me
and she has taken care of me a lot at my worst times. I love her with all my
heart and she is the sweetest grandmother in the world. Even though she has six
grandkids, she still manages to show all her love to each and every one of us.
Grandpa. My grandfather is the wisest man I know. Whenever
I’m in need of really good advice, he is always there. He has a way with words
and he can instantly put a smile on your face the second he starts talking. He
views his life in such a positive way despite his hardships and his love for
god is infinite and he reminds us to be close to god and for that I am
grateful.
God. God is my number one. God has saved me so many times
when there have been instances where I should have passed away. He constantly
looks after me and I love him with my whole heart and soul. He continues to bless
me and he is the one I go to when needing help. He is the one who created me
and he is the one who loves me no matter what.
Of course there are other people in my life that have
affected it greatly but it would take too long to mention all of them and
explain just how precious they are. Maybe I’ll talk about them in my later
posts.
I know that not everyone is religious and I’m not one of
those people who pushes religion onto others. If you make it clear once you’re
not into having a relationship with god then I step back and never mention it
again. This is not a catholic blog but I do mention god from time to time
because he is very important to me.
Whenever I mention to people about my illness(es), they look
sad. I don’t understand why, I mean I know why but I don’t feel like it’s
something to be sad about. Illness is just something that’s a part of life and
even though some endure and others don’t, it doesn’t make it any less of a
reality.
I think those that are healthy are aware of illnesses in the
world but they’re not aware on the fact that some people who are ill don’t
expect a sorry look or an “I feel bad for you.”
We just want to be treated normally because well we are
normal. We just have extra obstacles to deal with when it comes to being ill or
disabled. Being ill or disabled doesn’t
define us as a person; it’s just an extra component we need to deal with.
“You’re illness does not define you, you’re courage and
strength does”-Anonymous.
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