First of all, I am sorry it has been so long since I’ve
blogged. This entry is actually a
month later than I wanted it to be, but December was a crazy month. I didn’t felt too well the majority of
the month and the end of the month was busy with Christmas festivities. Now that things have slowed down, here
is a post I’ve been writing in my head for a while but have just found time to
actually write.
Second of all, sorry this is so very long. I guess I am making up for lost time!
The first week of December marked 20 years since the
diagnosis of my illness, Juvenile Dermatomyositis. So much of that time in my life is fuzzy. Other things I remember vividly.
I remembered that I hadn’t felt well for a long time, which was very confusing for a child. At times I felt no different than my peers, and other times it was obvious to me that I was different than them. I remember not being under enough anesthesia for my biopsy
and I still have memories of it because of that. I remember being scared and confused as we waited for the
results, knowing that they suspected two possibilities. The first would be a genetic disorder
that would mean I would most likely not live past my teens. The second was Juvenile
Dermatomyositis. Of the two, JDM
(Juvenile Dermatomyositis) was the better option, even though it can still be
fatal and is much harder than I could have ever imagined at that point, there
were at least treatment options. However,
when you have a muscle disease, there really isn’t a “good” diagnosis. I remember falling on my bed crying out
to God and completely dedicating my life to Him in that time of waiting for
results. I had made a decision to
accept Christ a couple years previously, and being faced with life and death
made me realize the importance of growing in that decision. It was a turning point in my life
spiritually, and I grew so much in that time.
I also remember thinking now that we had an answer, things
would be better. I learned the
hard way that in many ways my story had only begun. Most people still incorrectly believe that you get a
diagnosis, get medication, and then shortly after that you are better. Even now, I’m often met with skepticism
from others of why the doctors can’t “fix me.” I have no idea why people think doctors have all the
answers; after all, if they did, we’d have no use for funeral homes. Truthfully, doctors are human. There are some good ones; there are
some bad ones; there are some who truly care about their patients; and others
who have such huge egos that they blame the patient if they can’t find the
answer. The best doctors realize that the human body is complex and that they
don’t have all the answers but they do their best to use the knowledge God gave
them to give the patient the best quality of life they can have. I have had doctors who have been great;
I have had doctors who were uncaring and negligent and I still pay for their
mistakes. I would learn through
the years that I would have to become my own advocate, and that I could not
just blindly trust doctors thinking they had my best interest at heart. I now think through and pray about
every decision I make regarding my medications. I have learned that even the best doctors don’t have all the
answers, and that I am much better off talking to the One who does have all the
answers.
I could definitely expand on the subject of doctors--I could write a book about doctors and what makes a good one and what makes a bad one--but this was supposed to be about my diagnosis—so back to
that we go:
As I said, many people assume that the diagnosis will be the
end of the story. You get an
answer, you get a solution to that answer, and game over. That’s not how it works, at least not
always. I wish it was! While it is nice to have a “name”
for the problem, that is only the beginning in so many ways.
With juvenile dermatomyositis, most doctors will say there
are usually three “routes” the illness will take as far as prognosis goes.
The first, and best route is that the patient responds well
to medication. This is still not
an easy process, as the drugs used for this illness are toxic and powerful and
almost as hard as the illness. It
is a rough few years, but eventually the patient reaches remission and is able
to live a normal to almost normal life.
The second, but worst route is that the patient doesn’t
respond to treatment. The illness
moves too fast for the treatments to take hold and eventually the complications
prove fatal.
The last route is the route I am in; it is a route that
varies from both of the extremes. There are varying degrees to how much the illness affects the
patient’s quality of life, and each patient may deal with various complications
that can cause disability and more limitations. Some people in this group get close to remission, while others barely escape the fatalities of this illness to fight another day. I know people who are in this
category who still struggle more than those in remission, but don’t struggle
nearly as much as I have. I also
know of people who have symptoms much more severe than mine. It is definitely a very varied group! Doctors don’t really know why some
people seem more resistant to the treatments or have more severe symptoms than others; but I
can tell you it has nothing to do with their spirits. Some of the people I know who are fighting the hardest with
the most positivity have the most severe cases and the most setbacks. One of the most incorrect things I have
ever heard is that people would be all better if they were just more
“positive”…a positive attitude is vital in surviving any chronic illness, but
it will not cure or erase the illness on it’s own.
For me there have been many ups and downs since that day of
diagnosis. I have had years when I
have been better; I have had years when I have been worse. Every year has been a struggle in some
way. Some years were just a rough emotionally as they were physically. All I
know is the JDM has been present in my life for as long as I can remember. It affects me more than anyone could
ever imagine. . I have done my best to still maintain a life of joy in the midst of suffering, but the presence of my smile does not mean absence of JDM. I could write
endlessly about everything that has happened in the span of my life. It would take me hours to
write and hours for you to read.
There have been so many things I could expand on, so many experiences I
could write about, and maybe one of these days I will—but today, I just want to
write about how I feel after 20 years of fighting.
I am tired.
Especially since while my story didn’t end at diagnosis, it
also didn’t begin there. We know I
had symptoms for at least two years before my diagnosis; but reflecting on my
childhood, I was a fragile kid from birth. I could have begun my journey with dermatomyositis long
before we even knew it. Yes,
twenty plus years of fighting a beast like DM is absolutely exhausting.
I am tired of
years of doctor’s visits, with very little progress. I am tired of medications that make feel worse instead of
better. I am tired of wanting to
be better so badly, that I often push myself to hard and end up causing a
flare. I am tired of rash flares and agonizing pain. I am tired of a body that reminds me of all the things I can't do. I am tired of being at the
end of treatment options and wondering if there really is any help or hope for
my condition.
But I believe
that the Greatest Physician knows my every cell and fiber, and can choose to
make me better even with treatments that are unconventional or unproven. That
He can choose to heal me even though my state seems helpless. That He will lead me to the right
medications in the right timing.
The strange thing about this last year is the medications that have
helped me with my dermatomyositis symptoms the most are ones that are not even
typically used in the treatment of dermatomyositis. I started taking them for other reasons, just to find an
ease in my DM symptoms. That is
not coincidence; that is God and the answer to prayer.
In the meantime I
will pray that God opens the right doors and gives me guidance on steps I need
to take in my medical treatment.
That He will lead me to the right doctors, medications, and therapies
that will best benefit me. I will
praise Him and thank Him for answers, medications that help, and doctors who
care. I will accept and trust that
healing much come on His timetable.
I will constantly submit my will to His, and pray that He uses me in the
way that glorifies Him the most, even if that means suffering. I will love Him and serve Him even if
healing isn’t a part of my story. I will praise Him through pain and uncertainty.
I am tired of how
being sick affects relationships.
I am tired of feeling so isolated. I am tired of being a chronically sick person in a world
where most people my age are healthy and don’t understand. I am tired of being gossiped about
because I don’t “look sick.” I am
tired of having a hard time trusting people because I have been so hurt in the
past. I am tired of having
to spend so much time at home alone, and having very few friends who understand
the importance of visiting me, or who are just so busy with their own lives they are unable to visit me.
I am tired of being a person who loves so deeply but feels so
disconnected from the majority of the world.
But I believe
that I have never lost a true friend.
This illness has its setbacks, but eventually it reveals who is truly
there for me and who is just pretending.
The people God removed from my life didn’t need to be there in the first
place. I may not have a lot of
friends, but the ones I have are worth more than gold. I believe the ones I am close to now,
are ones God has clearly placed in my life. I believe the friendships I have developed through online
support groups are also very important, even if these people live so far away I
may never see them in person, that doesn’t mean that we don’t impact each
others’ lives. I believe that I have friends who I may not hear from much who still pray and think of me. I believe if He
sees fit, He will bring the right friends to me in the right timing, and I know
He can make this happen when I least expect it, because He’s done it before.
In the meantime,
I will cherish the friends I do have with all my heart. I will be a loyal and compassionate
friend to each and every friend I have.
I will thank God for them and invest in them as I feel He leads me. I will thank God for things like online
support groups while I can’t get out much. I will pray about new opportunities and trust God as I allow
Him to open new doors.
I am tired of
this illness stealing things from me.
I am tired of wondering if dreams and desires of my heart are just impossible. I have wanted to be a wife and a mother
for as long as I can remember, and sometimes it breaks my heart to wonder if
that is even possible.
But I believe
that if God sees fit, He will make all things possible in His time. I believe that if marriage is part of
my story, He will lead my future husband and I into that relationship in His
timing. I will trust that God can
make any obstacle obsolete if He so chooses. I believe with my whole heart, that if that day comes, our marriage will
glorify God more because of my
suffering, not in spite of it. As
for being a mother, that seems even less possible considering my health; but I
know God can change things and I also realize that you don’t have to give birth
to be a mother.
In the meantime,
I will pray and continually give these desires over to God. I will submit all these things to Him
in reverence. I will ask Him to
change these desires if they are not part of His will for me, while still
believing that He can make it possible if it His will for me. I will pray that if marriage is part of my story, that He will already begin work in my heart to prepare for that, and that He will do the same in the heart of my future husband. This may sound strange to some, but I will also thank Him for my
cats; yes, I may not be a mother to a human child, but I am thankful to be a
“cat mom,” and they honestly do help fill a void. They are God’s creatures to and I do not take the fact that
God has given them to me lightly.
May I honor Him in my care of Ariella and Toby, as He reminds me of His
love for me through their sweet personalities and beautiful faces.
I am tired of not
being able play with my niece the way I would like to, the way I would have
been able to a five or six years ago when I was stronger. I wish I could get down on the floor
and play with her, chase her around, really interact with her the way I would
if I was stronger.
But I believe my
life can teach her to love and accept people who are sick or disabled. There are so many people in this world
who are quick to judge those who are sick or disabled, and I surely do not want
London to become that. I hope and
pray that my life teaches her to see and love people differently.
In the meantime I
will do what I can for her. I will
love her and pray for her. On a
less serious note, I will buy her really cool presents. I may not be the strong aunt, but I can certainly be a cool aunt with good taste that buys really cool toys and cute clothes. :)
I am tired of
being able to do so little for myself and by myself. In 2011, I lost so many abilities and I am still fighting to
get them back. The last few years
have worn on my soul the most because so many things have become extremely
difficult, things most people do easily and think nothing about. I am talking about needing help doing
simple, simple daily things, like dressing myself, getting off the couch, or
getting out of the shower (just to name a few.) I have gotten better than I was in 2011, but the progress
has been painfully slow. I
literally feel like I am fighting just to survive somedays. I am tired of having to have
accessibility equipment everywhere when I am only 29. Though the invitations and opportunities are few at the moment, I am tired of not being able
to do simple things like, just go out to eat with friends, because I may need
assistance they can’t give me.
But I believe
that God is honored in the fact that so much has been taken from me yet I still
praise Him. Though I have my days
when I feel like given up, I haven’t yet.
I believe that is a testament to my faith. I believe God is glorified when my mom so selflessly serves
Him by taking care of me. I
believe God is glorified when people who don’t even know me, pray for me. I may not be where I want to be, but I
am so much better than two years ago.
I believe, with patience, some of the opportunities I long for will
open.
In the meantime I
will thank God for the people who help me, especially my mom. I will thank Him for accessibility
equipment because I know there are disabled people all over the world who could
desperately use it but have no way to access it. It may not be fun to use accessibility equipment so young, but it is a blessing to
have when you need it. I
will thank God for any and all progress, no matter how small, and keep fighting
to get stronger, no matter how hard that is feels sometimes.
I am tired of
trying so hard to do everything, but still having people not understand and
accuse me of “not trying hard enough.”
I get this from healthy people, but I have also at times sensed or been
flat out judged by other people who are chronically ill but are still able to do more than I
can. This has even happened in my
myositis groups from time to time, as some people there are much milder cases
or cases that respond better to treatment. Being judged by them is often worse than being judged by a
healthy person! I am tired of
wondering why I don’t get better faster despite my best efforts. I am tired of the times I feel so much
guilt I start to believe those lies, pushing myself, and causing flares and
injuries.
But I believe, no
I KNOW, I am trying with all my might.
I may not have much to show for it, but I am still here, I am still
fighting, and I am stronger than I was two years ago. I believe I would not have made the progress I have made if
I hadn’t been trying. I also know
that it is much harder to keep going when progress is coming slow, than it is
when it comes rapidly, and the fact that I keep going is a testament to my
strength, not my weakness.
In the meantime I
will try as hard as I can, but be more concerned with my spiritual strength
than my physical. I will do my best to ignore those
negative comments and feelings. I
will use the strength God gives me to get through each day, and let His grace
be sufficient for the rest.
I am tired of how
this illness makes me feel, about my self esteem and my self worth. As hard as
I have tried not to over the years, there are so many times I have felt ashamed
for being sick. I don’t know why;
I did nothing to cause this and I do the best with everything I have been given
to get better. It is just
sometimes so hard to separate the illness from me as a person. I realistically have to factor it into
so many decisions that sometimes it is painfully hard to realize that the
illness is not who I am. When you
can do so little, it is hard at times to feel you have value or purpose. I miss the times when I was more
involved in church and feeling like I made a bigger impact than I feel
now.
But I believe
God’s ways are not our ways. He
may be using me in ways right now I can’t see or even comprehend. Yes, I am a person with a chronic
illness; but that doesn’t make me a “sick person.” Instead it has made me a fighter. It has taught me lessons about compassion, love, strength, humility,
grace, forgiveness, and patience that I would never learn in any other
way. Dermatomyositis has been a
curse in so many ways yet, it has been a blessing in others. How can something so miserable be made
into things so good, like the qualities listed above? There is only one way I can explain it-only through the
miraculous grace of Jesus. God is
in the business of making beauty out of the ashes.
In the meantime I
know I will still have days where I doubt my value. This is one reason I put this all in writing, so I can
remind myself on those days of doubt. I will lean on those who God has placed in my life to
remind me of value on those days of doubt, but more so I will lean on God to
remind me that yes, this illness has been a part of my testimony; yes it has
greatly changed the course of my life and I don’t understand that sometimes. However, I also know it has helped me
become who I am today. Yes, I am a
person who fights a chronic illness everyday; but I am also a reverent
daughter, kind granddaughter, loyal friend, caring cat mom, supportive sister, cool
aunt and so much more. In
2014, I will try to define myself by these things more than I try to define
myself from the illness. Most of
all, I will try to define myself first as a daughter of the King of Kings. Because it is in Him my weakness is
made perfect, and that is why I am
worthy and have value. I can still
serve Him and love Him even in my weakest moments. I may not be able to do a lot, but I can still praise Him
through pain, love and cherish the people He has blessed me with, I can care
for my cats, I can listen when a friend needs me, I can encourage…. I will be
faithful in the small things, because one day when all is said and done, I may
just find that the small things were not so small after all.
