And for that, I am truly sorry. The whole reason I began to blog, as I have mentioned in at least one, if not more of my posts, was to hopefully reach someone who was struggling whether it be with RSD, some other type of chronic illness or just with life. I was blown away to hear from so many people tell me how it helped them and I wanted to continue to do so but then life got crazy and blogging took a back seat. I am sorry to those who have asked me to continue and have yet to see a post from me. I did promise to continue, so here I am. Better late than never, right?
My RSD has spread once again. I now have it in both arms, starting in my shoulders making its' way down to the tips of my fingers. From there it travels through my back, down my buttocks (is there a more appropriate word?) and then skips my legs but unfortunately, didn't leave me completely untouched in my lower body as it's in my left foot, the originating point of this nasty little nuisance. I was pretty depressed when I learned of its' spreading but at the same time, wasn't too surprised as this disease is notorious for kind of taking over one's body. Some luck out and only have it in one limb, but many, like myself, have their regular body seized by this disease as it slowly makes a home for itself in a new body part. This disease is malicious and unpredictable. It is my worst enemy and I have to share a home with it. It's ruined relationships and has even toyed with my psyche from time to time. It has limited my ability to perform day-to-day tasks. Shoot, it has affected my job so much that it's on the line as we speak. I have my own personal pharmacy that I take on a daily basis just to try to limit some of the pain I experience. Pharmaceutical companies must love me because of the number of pills and the number of medications I am given each month. I resent it and everything about it, but I won't give it the satisfaction of letting me give up on everything. I will keep my job, I will attempt to mend broken relationships; I will remain positive and will continue to reach out to others who struggle in hopes to help them realize they can deal with hardship and it does not have to define them.
A lot has gone on since I last posted. While I'm not quite ready to share details of everything that has occurred, I have experienced many hardships and I've reached my breaking point because of them. My list of friends has shrunk quite drastically, although it's doubtful I would have leaned on them during these times anyways simply because I have done so countless times before and I can imagine it has exhausted many to the point of needing to end the friendship. Just to catch you up on some things, although I am sure many of you figured it out by my postings on Facebook: we moved into a new house which I love, the kids finished up the school year, Cameron graduating 1st grade, Ashlyn graduating kindergarten and my stepdaughter Aspen graduating 3rd, and then there is the most exciting change which is the reuniting that took place between my husband and me. Marriage is a sacred union to both of us although during our separation, we both had conceded that it was not going to work out between us. We led separate lives, lived in separate cities. We only spoke when it was regarding the kids or him coming to visit the kids. It was sad to see the damage in our family and how broken we were. The kids had adjusted ok to the separation, but it didn't mean they wanted it to remain that way. Come March, things were changing between us. Tensions had eased, pride was put aside and the decision was made to try and work things out. The process was long and tedious. At times, I thought the pain would kill me and I didn't think we'd make it out the other side. But I soon realized that both of us had made radical changes in our lives and we weren't the same people we were when we separated. If we were, there wasn't a chance in hell our marriage would remain in tact. Slowly, the healing process began between us and we shared a new way of communicating, loving each other, respecting each other and embracing our differences instead of fighting over them. It's been five months since our reconciliation, but I can say with confidence that we are going to make it. Ask me 9 months ago if we would and I would have given you a completely different answer full of mean remarks and spiteful comments. I think God timed it this way so we wouldn't face the challenges and hardships that we are currently experiencing, alone. And the things we are experiencing right now would tear many couples apart without a doubt. Instead, it has brought us closer together, given us a chance to lean on each other and strengthen our bond even more. If you knew us well the last few years, you'd know we had an unhealthy and complicated relationship. I guess that's what comes with marrying each other after dating for six months, but we're still standing and we are stronger than I ever thought possible. The power of forgiveness and of humility are a strong thing. They are something that in the past, I did not give much thought to, nor did I ever consider doing. Sometimes I feel several years were wasted simply because of our pride, but I'd rather focus on shaping my future than trying to change the past or live in a "what if" world. I can only attribute this change in our marriage and the miracle of our reconciliation, to God.
So for those of you who are going through an impossibly hard time in your life right now, find someone to lean on. If you're married, lean on your spouse and let them help you through it. Instead of getting angry with them or letting this hard time tear you apart, allow it to bring you closer together. Remember that they are going through something too and you took a vow that included "for better or worse". The worse portion is difficult to get through, but not impossible. And if Adam and I can make it, then trust me, ANYONE can. We were seconds from a divorce and are now best friends, teammates and share a love and bond stronger than we could have ever imagined. There are no more fights, no more yelling. All that has been replaced by love, good communication and understanding. My RSD always makes for a challenge in any relationship I have, whether it be a friend, family or my marriage. But, it doesn't define me and your circumstance do not have to define you. It does not have to negatively impact your relationships. It can if you allow it, but it can also be something that makes your relationships stronger. I challenge you to start viewing your hardships as opportunities to make your relationships better instead of allowing it to put a strain on them. Find ways to improve your relationships because in the end, you are going to want people standing by you instead of being alone.
Until next time...and I promise, there will be a next time.
Thursday, August 15, 2013
Tuesday, January 1, 2013
Exciting things are coming - edited and updated!
First off, I hope everyone had a magical Christmas and are looking forward to a wonderful New Year! I ask that you read this entire post as there is some very important information and some changes to the blog that I am going to explain. For those of you who regularly follow my blog (can't believe I actually have people who do), I am sorry for the extended gap in time since my last post. I didn't realize it had been almost month since I last said anything but quite honestly, I wasn't in the most positive of places so I needed to pull myself out of that funk and find my peace again. Dealing with the spread of my RSD, the pain, the craziness that is Christmas and all the other chaos of my life proved more difficult than I thought. I can easily throw on a smile and say I'm doing ok to those who ask, but inside, I was struggling.
The blog has taken off like I never expected it would. I have heard from family members, friends, old friends whom I haven't spoken to in ages and strangers. Many of those I have heard from have asked that I add a donation button to my blog so they may help with medical bills or treatments that I haven't been able to afford. I wanted to thank all of those who were kind enough to even think of doing such a thing, but after careful consideration, I have determined that it is not in the spirit of my blog to ask for personal donations. While I do have a link on my page for this (thank you to the friend who set this up), I will be moving it to the bottom of my page as to not call attention to it (I only say this so you don't confuse which one is to donate to the new organization. The donation button for the organization remains at the top of my page)and will ask my friend to remove it (sorry, I'm not tech savvy enough to do so myself). Please understand I am not belittling those who do have blogs for personal fundraisers. Blogs are for each individual to use as they please and some may use their blog as a means to raise money for their families, for medical bills, for adoption, etc.
The purpose of this blog is to share my journey, raise RSD awareness and to help others. I am excited to announce, I am in the process of developing a non-profit organization (working on obtaining an LLC as we speak) to help those with RSD! After meeting so many wonderful people who share this disease and through my own experiences, I have learned there are many that struggle to pay for even the basic care of this disease such as doctor visits, medications and other necessities. Some of the treatments proved to be most successful such as nerve blocks, injections, spinal cord simulators, pain pumps and Ketamine infusions are out of reach for most RSD patients due to the cost. Unfortunately, some of the other treatments which have proven helpful are still labeled as "experimental" even though many have used these treatments have since experienced lessened pain and in some cases, put it into remission completely. Any treatments that are labeled experimental are not covered by insurance and typically, patients are required to pay the full cost of the treatment upfront. It is my belief that many of the treatments have not had the experimental label removed because there is not enough funding to complete the necessary trials and research for RSD.
Living with this disease is not living. What may be easy to you, like getting out of bed in the morning, getting dressed...all that is a huge chore for us. Without proper medical care and the right treatments, RSDers miss out on life. I don't know about you, but I'm not ok with that and I am forming this foundation to change that. Once it is up and running in its' full capacity, my organization (still working on the name) will allow people to apply for grants to assist in paying for their treatment. Everyone deserves a chance to live a life as close to normal as possible and if my organization can help someone pay for the medication or treatment that will allow them to do that, then I consider it a success. I will talk more about it in my next post, but in the meantime, I just wanted to let everyone know that if you use the donate button at the top of the page, all of those proceeds will go towards this new organization. You will be helping someone possibly get their life back which will not only benefit them, but everyone around them. Thank you for considering helping someone. All donations, small or large and more than appreciated!
xoxo
The blog has taken off like I never expected it would. I have heard from family members, friends, old friends whom I haven't spoken to in ages and strangers. Many of those I have heard from have asked that I add a donation button to my blog so they may help with medical bills or treatments that I haven't been able to afford. I wanted to thank all of those who were kind enough to even think of doing such a thing, but after careful consideration, I have determined that it is not in the spirit of my blog to ask for personal donations. While I do have a link on my page for this (thank you to the friend who set this up), I will be moving it to the bottom of my page as to not call attention to it (I only say this so you don't confuse which one is to donate to the new organization. The donation button for the organization remains at the top of my page)and will ask my friend to remove it (sorry, I'm not tech savvy enough to do so myself). Please understand I am not belittling those who do have blogs for personal fundraisers. Blogs are for each individual to use as they please and some may use their blog as a means to raise money for their families, for medical bills, for adoption, etc.
The purpose of this blog is to share my journey, raise RSD awareness and to help others. I am excited to announce, I am in the process of developing a non-profit organization (working on obtaining an LLC as we speak) to help those with RSD! After meeting so many wonderful people who share this disease and through my own experiences, I have learned there are many that struggle to pay for even the basic care of this disease such as doctor visits, medications and other necessities. Some of the treatments proved to be most successful such as nerve blocks, injections, spinal cord simulators, pain pumps and Ketamine infusions are out of reach for most RSD patients due to the cost. Unfortunately, some of the other treatments which have proven helpful are still labeled as "experimental" even though many have used these treatments have since experienced lessened pain and in some cases, put it into remission completely. Any treatments that are labeled experimental are not covered by insurance and typically, patients are required to pay the full cost of the treatment upfront. It is my belief that many of the treatments have not had the experimental label removed because there is not enough funding to complete the necessary trials and research for RSD.
Living with this disease is not living. What may be easy to you, like getting out of bed in the morning, getting dressed...all that is a huge chore for us. Without proper medical care and the right treatments, RSDers miss out on life. I don't know about you, but I'm not ok with that and I am forming this foundation to change that. Once it is up and running in its' full capacity, my organization (still working on the name) will allow people to apply for grants to assist in paying for their treatment. Everyone deserves a chance to live a life as close to normal as possible and if my organization can help someone pay for the medication or treatment that will allow them to do that, then I consider it a success. I will talk more about it in my next post, but in the meantime, I just wanted to let everyone know that if you use the donate button at the top of the page, all of those proceeds will go towards this new organization. You will be helping someone possibly get their life back which will not only benefit them, but everyone around them. Thank you for considering helping someone. All donations, small or large and more than appreciated!
xoxo
Friday, November 30, 2012
The craptastic week
Today was a rough day for me. Well, truth be told, it was
a horrible, couldn’t wait for it to end, never want to do it again, kind of
week. After I logged off of work for the day, I sat in my bed and cried. The
tears just kept coming and I cried for about an hour. The thing is, I rarely
cry. I used to be a crier, but after all of the things I went through over the
past few years, I learned how to stop the tears before they surfaced. Since
then, crying is just something you won’t catch me doing, well, except for today
apparently, oh and the days when the pain is so bad I wish I could cut off a
body part. So, once my pillow was soaked and the tears subsided, I sat there
questioning why today, I did something I hadn’t done in a long time.
I knew I had a hard day at work. Typically work is my
escape from my crazy life. During work I don’t think about my marriage that is
almost non-existent, I don’t think about what is waiting for me when I leave my
parents and go back to Austin. I don’t think about this disease and what place
it will attack next. Work is the place where I know I can succeed and I am not
defined by ANYTHING except what I produce. But today I realized, I can no
longer rely on work to be my escape from reality and that was what sent me into
Sob-Fest 2012. Well, yes, it is what
sent me into Sob-Fest 2012, but there were many events leading up to it, too.
I went to Austin Monday to visit both my neurosurgeon and
my doctor who sees me monthly for my RSD. The neurosurgeon told me my recovery
was going well and just advised me to keep an eye on the surgical site for
about six more weeks. Victory: one down, one to go. But then I visited my pain
doctor. During my visit, we discussed some new symptoms I was experiencing in
new places, he checked me thoroughly and gave me the news that I already knew
was coming, but was still just as hard to swallow: my RSD, which used to be
isolated to my left leg and neck, had spread to my right leg, shoulders and
ears. As he sat there, figuring out the new cocktail of meds I would be on this
time and what other symptom treatment options there were, I sat there, feeling
nothing. No sadness, no anger, no frustration. Nothing. Given this disease is
the worst thing that has ever happened to me, one would think I would have some
sort of emotion over the fact that my disease has spread, but nope, not
me. Not Julie, the Icequeen (nickname compliments
of my estranged husband). As I said, over the years of heartache, distrust and
sadness, I had learned to shut off any negative emotions as a coping mechanism.
It proved beneficial for a while, but once I separated myself from the toxic
relationship I was in, I thought my emotions would come back. Well, they
didn’t. With a smile on my face, I took my pile of prescriptions and left. As I
was exiting the office while digesting the most recent news, I received a string
of rude and angry texts from my husband. Very nice way to top off an already
unpleasant situation, but still, I was not fazed and carried on with my day. We
got home Monday evening and I went straight to bed as I was in a considerable
amount of pain. Most RSDers I know don’t tolerate car trips very well and I am
no exception to that.
My RSD continued to be pretty unbearable through the week;
I suffered from every symptom this
disease has to offer. I know I mentioned some in my first or second post, but for
the record, they are(and yes, they all happen at once):
· burning pain (like, several of my body parts are
on fire, pain)
· stinging pain (like, a million bees are stinging
me all at once, pain)
· spasms (like my muscles were doing their own
excruciating exercise)
· insomnia (such as not falling asleep at all or
not falling asleep until 3am, then waking up at 5am, falling asleep, waking up,
you get the picture)
· allodynia (sensitivity to touch) (I had to wear spaghetti straps and
have my hair up because anything that touched my neck or shoulders (yes, even
clothes or hair) caused pain worse than anything you could ever imagine). I cannot paint my toenails because even the brushstroke of it hurts like heck.
· inflammation (also causes discoloration of the flaring body part – visual below)
· brain fog (I could be telling a story and mid
sentence, completely forget where I was going next)
· irritability – we all know what that is. It
sucks.
On the left, you will see my foot in a flare. I do not normally have cankles, but my ankle
and foot are very swollen. You can also see the discoloration - usually a mix of a bluish,
purplish, redish tint but it's not always the same. And no, my toes aren't cutoff, they are
curled in completely due to the pain. With my new stimulator, sometimes my toes will
loosen up, but not completely. In some cases, this can be permanent. My toes have been
this way since February. On the right, you can see part of my shoulder flare. My shoulders
seem to turn bright red and it covers the back, top and sometimes rolls over to the front of
my shoulder/chest area.
Yes, I suffered from every single one of these symptoms
this week and now they were in new places. Yesterday, I woke up and there was a
sore on my ear. It looked like I had scraped my ear on the pavement and it was
now scabbing over, but the pain from it was so bad I couldn’t even lay my head
on my pillow. All of this courtesy of RSD.
So, just to recap what led up to today: I had a doctor
appointment at which I learned my RSD had spread greatly, I
received very angry and unpleasant texts from my husband and I experienced
EVERY symptom RSD has to offer all week long, not to mention, I try to hide the pain I am feeling as to not overwhelm everyone I'm around and that takes A LOT ouf of me. OH and I forgot to mention, I got
to stop by the office on Monday to pick up a few things and realized how many
people there were in Austin that I missed terribly – my few friends, my very
small Austin-based support system.
So now today: I signed on early to work because that’s my
thing: I always work. Two days after I was released from the hospital, I was
back working. Some say it’s a bad thing, I think it’s dedication, an escape (or
used to be), a good use of my time and a way for me to avoid 5,000+ emails
piling up in my inbox. But just because I can normally suppress all my emotions
and focus all my energy on working, doesn’t mean it is fail-proof. And today, I
learned just that. I attended a meeting right before my shift ended and
received some unexpected news. It was nothing horrible, I wasn’t fired or
demoted so no one panic. Like I said, it was just unexpected. Well that unexpected news hit me harder than
I could have ever predicted and it kicked off Sob-Fest 2012. Along with the
crying, I felt every negative emotion I could think of: anger, betrayal,
frustration, lost, hopeless, hurt, upset…the list could go on and on.
If you haven’t read any of my blog posts so far, stop reading
this right now and go read my first three. For those of you who have read the
first three, you know I take life in stride and have learned to be happy,
content and positive, despite my situation. Today made me question if that was
really the case. Was I really happy? Content? Positive?
And then I read a personal message on Facebook from a
newfound friend. It reminded me who I really am and what I was feeling, while
it was valid and ok, was simply temporary. Yes, I am struggling right now, but
that does not mean I have to have a negative outlook on the world. Things
happen and they always will happen. My job can’t be my escape; honestly, I
don’t know if it ever was. I could wake up tomorrow and not be employed, so
then what would I do? Seriously, I asked myself this question. And then I
realized, I would be ok. But come to think of it, nothing should ever be my escape. I live in reality and I do just fine. I should have never dubbed something my "escape" when I am ok living in my own reality and facing what I have going on in life. My week has been bad. Everyone has bad weeks. But I
refuse to let this week change the way I truly feel.
So if you are having a hard day, week, month, even year, it
doesn’t have to negatively impact the way you think or feel in general. I am
saying this because it is true and I’m also saying it because now I have it in
writing and I can refer back to it when, not if, but when I have another hard
week. Right now as I am sitting here writing this, I still feel some of those
negative emotions. But, I can promise you they will fade away before I wake up
in the morning and my outlook on life won’t change. I will still be happy. I
will still be content. And I will definitely, most certainly, be positive. If
you go through life struggling with unhappiness or surrounded by negativity or even struggle with it from time to time, then do me a small favor and stop for a moment, close your eyes and think about this: what makes you happy? What makes you feel content? What is something positive in your life? If you ever again find yourself feeling negative emotions, then turn your focus to those things and I guarantee you will feel better. It's what helped me get through today.
Until next time :)
Friday, November 23, 2012
My quest for control
Control is defined as the
power to influence or direct people's behavior or the course of events.
It is something I have
chased, something I have demanded to have for years, but regrettably, something
I’ve never been able to acquire. The more out of control life became for me,
the more desperate I grew to solve the mystery of this untouchable, unreachable
goal to gain full control of every single aspect of my life. This post is hard
for me. There are many things I am going to say aloud that I haven’t before and
I feel very vulnerable. But, I’m going to put my pride aside, because this is
very important to me and I know there are others who are dealing with something
similar. I truly hope my feeling of being exposed does not go to waste and this
helps someone out there.
It was on the eve of my baby
boy’s first Christmas when a drunk driver came barreling through my life, sending
me into a tailspin. I could have lost my son, my unborn daughter, my sister and
the thought of that, which tormented me for years to come, was terrifying. After
that horrible event, I craved control and did anything I could to have it.
Life got a little better,
giving me a false sense that I was actually in control. I don’t think I was alone
that I felt I was in control when life was good, but it’s just a delusion; no one
is ever truly in control. I got married, made a home with my new husband, my
son and shortly thereafter, my daughter. But a mere four weeks after her birth,
I was once again reminded, I had control over nothing. My daughter was
hospitalized for an infection, right in the middle of a move into our new
place. While my family packed our clothes, moved our furniture and I hovered
over my daughter’s tiny little body covered in tubes, my husband, unbeknownst
to me, was spiraling out of control, relapsing after years of sobriety. Life
became chaotic. Over the next few years, I tried desperately to control my
husband’s addiction after that first relapse and the many that followed. I
tried to control the demise of our financial stability, as I had become the
sole breadwinner for our family. Even during the periods of time in which my
husband was sober, I tried to control where he went, who he saw, where our
money was spent, all out of fear I would lose the control I thought I had over
his sobriety. The more control I tried taking over our marriage, his sobriety,
and our children, the more out of reach it became. When I was diagnosed with
RSD and Fibromyalgia it was just one more slap in the face: I could do nothing
to control the fact that I was facing a ruthless and horrifying future filled
with pain and torment.
About nine months after my
diagnosis, my husband and I separated. During a time that most would think
difficult or challenging, a calm came over me; something I had never
experienced and could not begin to describe. I was now a single mother, the
sole financial provider for my children, had a good but hectic career, had one
of the worst chronic pain diseases known to exist, yet I was at peace. A few
months after our separation, I was t-boned while driving home and it not only
made for one of the worst flares I had ever experienced but it worsened my RSD,
something I didn’t even think possible. It was the drunk driver who sent me
into a chase for control, so one would think this accident would do the same,
especially because of the subsequent worsening of my disease and finding out
that I would require a surgery because of it. But funny enough, there was no
more yearn for the control that I chased for so many years.
Here’s the thing: you cannot
control life. You cannot control what happens to you. You cannot control what
your husband/wife, your children, your friends or even strangers do. You can’t
control what diseases choose to infest your body. What you can control is the
person you choose to be; how you handle yourself in the worst of times and the
best of times. I COULD play the victim, but I choose not to. What I can control
is what I choose to do with the life lessons I learned throughout the years of
hardship. I learned to care for others. I learned to be compassionate to those
who are going through a difficult time. I learned to be grateful for the small
things in life. I learned that God’s plan for me was to go through those
difficult times that at one point, I didn’t think I would survive, only to show
me that what I endured has made me who I am today. I will be the first to
admit, having an addict in your every day life, struggling financially for
several years, having a marriage that is on life support with the plug half way
out of the socket and having to deal with the pain I do, the pain that I would
trade for labor (yes, the child birthing labor) pains any day of the week,
sucks. It is truly, terribly, awful. But, after trying for so many years, I can
finally admit I cannot control ANY of those things.
My advice: stop chasing
control over things you can’t and start controlling who you are. The many
people I have been blessed to meet who share this disease or other health issues
have been a pillar of strength and many role models to me. Most aren’t victims;
they don’t wallow or want pity. They simply want people to understand them and
what they deal with. This disease has humbled me a great deal and has shown me,
my circumstances don’t define me, but rather I define me. This change didn’t
happen over night. It began when I was diagnosed and progressed ever since, so
I will be the first to say it isn’t easy, but most importantly, it’s NOT
impossible.
To those who are going
through difficult times, whether it be the demise of marriage, a cruel disease,
financial strain…whatever it may be; are you going to waste your time trying to
control everything around you or are you going to admit you have no control,
and start deciding what person you want to be not despite of what you are going
through, but because of what you are going through?
Until next time :)
Monday, November 19, 2012
Diagnosis/Treatments...oh the treatments.
Ok, so I am just going to admit that I do not know proper blogging etiquette and quite honestly, if there is such a thing, I am probably not going to follow it. If this offends you, I am sorry, but I truly hope no one would get bothered by such things. To warn you, this post is a bit long. I thought about breaking it up, but I felt it better to get it all out in one long post, rather than several subsequent posts. It just wouldn't flow right. Oh and one more thing...I am still heavily medicated from my surgery, so my first post, today's post and any in the near future may have some grammatical errors. Catch me on a good day and it should be perfect. After all, that's kind of my career.
So, my pain started about six years back. I was practically pregnant twice in a row, but during my second pregnancy, on Christmas Eve 2006 with my sister and 7 month old son in the car, we were hit by a drunk driver on our way home from our church's service. The driver who hit us was going about 80 and we were going 35 (that was the speed limit). Our car spun more times than I can count, jumped a curb and right as we were about to start flipping, we slammed into a pole on the driver's side. Long story short, chaos ensued, we were all rushed to the hospital and my son was kept over night. Since that time, I had horrible back/neck pain and my foot was always bothering me. I was pregnant, so back pain was normal, but once I got her out of me, the back pain didn't stop. That's when I decided to start seeing a doctor to figure out what was going wrong.
Over the next few years, I saw many doctors who either thought I was crazy, a junkie looking for a quick fix or just had a pulled muscle. No one took me seriously and I began losing faith in the medical community. I quit seeing my neurologist for my brain cyst, quit seeing my urologist for my kidney stones, put off seeing a doctor for the cysts I developed under my tongue and refused to go to any check-ups. If no one was going to listen to me and they were either going to write me off or write me a prescription, I was done paying them one more cent of my money. I wanted help. I wanted answers. Most importantly, I wanted relief.
And then, one glorious day, I passed out while getting in my car. I was sent to the hospital and admitted for a heart condition known as SVT (Supraventricular tachycardia- say that five times fast). During my stay at the hospital, I fell in the bathroom, either from the heart condition or because my blood pressure dropped too low, too fast. I was already having pain, which they dismissed but because I fell, they decided to do an MRI to make sure nothing major had occurred. Well, the results came back and showed I had a herniated disc. HALLELUJAH!! Seriously, go with me, this really is a good thing. The cardiologist recommended I see a specialist for pain management. I had serious reservations as I envisioned walking into a room full of people waiting for their next fix. But, I bit the bullet and made an appointment.
I walked into the office: nice staff, big waiting room, normal looking people. This place was not nearly as scary as I thought it would be. I told the doctor why I was referred to them and he seemed kind and genuinely concerned. Then, he asked the questions: what kind of pain are you having, where is your pain and how long have you had it? I spent the next 30 minutes crying, trying to talk through my tears explaining how many doctors I had seen, how I was written off, what my pain felt like, where it was located, etc. Once I was done, I looked up at him expecting to see the look I had seen so many other times: the "wow, this girl is crazy and needs to be institutionalized" look. But instead, to my surprise, I saw a look of compassion and understanding. He started talking, explaining what I was experiencing is a real thing, with real symptoms with a real name. He gave me information on both the Fibromyalgia (which I self diagnosed thanks to all those commercials on TV years back) and RSD/CRPS. Fibromyalgia I knew. This one with all the letters, I didn't, but I knew one friend who had told me of her diagnosis, so I thought I'd start there. My doctor started me on a huge medication routine and told me of the many different treatment options. That night, I went home and sent a message to my friend who also had both of these diseases. She cried, I cried and she told me all she could about what I was facing. But the thing about RSD is it's fickle. Some people experience the symptoms in stages, some have it come on all at once, some never get all symptoms...you get the picture. Everyone is different. I began educating myself on this disease as I wanted to know exactly what I was facing and I'll tell you what, I wish I hadn't. It was about the scariest thing I ever read about. Shortly thereafter, we started treatments.
1. Medications - I was given eight medications, some which were three times a day, some four. I'm not the best medicine taker when it comes to remembering to take a dose, but this disease doesn't let you forget. I got my routine down pretty quick.
2. Injections - I couldn't tell you the names of all the different injections we did, but some of them worked to an extent (like the nerve blocks) and others did nothing at all except make the area sore where they put the gigantic, and I truly mean gigantic, needle. We did injections about two times a month, which required sedation, a driver and some downtime after they were complete.
3. Ketamine - well, I never got to try this one. I had never heard of this, but my doctor said it was actually a drug being used on the streets. He said it was in the class of hallucinogenics. Uh, WHAT? But as he explained it to me, it didn't sound so scary and I began to be hopeful about this course of treatment. We had the time, date, everything all set up and then I got a call from the place where ketamine would be administered telling me each treatment (and he prescribed five) would cost $5000.00. I'm pretty sure I fell over when I heard that number. $25,000 for this course of treatment. Oh and insurance refused to cover it. For once split second, I wondered how much I could get it for on the streets. Ok, joking. Seriously didn't consider that. In all honesty, I still hope that one day, somehow, I will be able to afford it and pursue this treatment option. I've heard it does wonders for people and I haven't ruled out the possibility that it's in God's plan for me to be able to have this treatment. Clearly, it's just not in His plan now.
4. SCS (Spinal cord stimulator) Trial - so here's the one we finally followed through with. It starts with a trial. Leads are placed on the epidural part of your spine, on either side of it. For the trial, the leads were about as long and thin as spaghetti. They made two holes in the lower part of my back for the leads to be placed and then they ran about half way up my back (on the inside, not the outside of my skin). The battery/brain of the machine was just taped to my back since after all, it was just a trial. The only scary part was, because the leads had to have a place to come out of my back, it left two open holes where bacteria was free to enter, meaning an immediate spinal infection was a serious danger to this procedure. I wore the trial SCS for 8 days. It's purpose is to send a sensation into the affected parts to replace the pain sensation we normally feel. It's not 100% effective, but the goal during the trial is to achieve 50% improvement or better in your pain level. After wearing the trial, we decided to go ahead with the permanent implant. It's a riskier procedure and cannot be done by the pain management doctor like the trial could, so I was referred to a neurosurgeon. Again, for the visual learners, here is what the trial looked like. Just think, EIGHT days of that on your back. Not as fun as one may think.
Controller Implant - sealed to avoid infection
5. Permanent SCS implant - After about 3 1/2 months of waiting, I got a call from the neurosurgeon to have a consultation for the permanent implant! With my doctor's help, I went with a model made by Medtronic. Since the leads are placed on your spine, the sensation can change when you sit, stand or lay down as the leads are either closer or further away from your spine, depending on your position. Medtronic has a great model that has a sensor which determines what position you are in and adjusts the sensation accordingly. You can get up to two stimulators (we call them stims), implanted as the area of coverage is dependent on the placement of the leads. My stim covers from about my lower back down to my feet. I had the permanent implant about 8 weeks ago. This time, they didn't use the "spaghetti leads" but rather paddle leads. Paddle leads have a better chance of staying put rather than moving around like the "spaghetti leads". I'm sorry, I don't know all the technical terms, so just go with me. This surgery was much harder on my body. They had to chip away some bone where the leads were placed and it's hard enough having one incision, much less two, which is what is required with the permanent implant. I have one incision about midway on my spine for the leads and the other incision was on my right, lower back/upper buttocks area for the battery. Because of my tolerance for pain medication and the complexity of the surgery, I was in the hospital for about three days after the implant. That's when I got my fancy ride back to Houston in the Navigator/hospital bed on wheels. Of course I'm giving you visuals on all of these things. How can you picture it without them? Anyways, I came back to Houston to recover as you aren't allowed to bend, reach, lift anything heavier than a pair of shoes or twist. Basically, everything you have to do to take care of kids. About four weeks into my recovery, I noticed my battery, which was supposed to be anchored down was practically flipping inside its' little pocket of muscle it was in. It was painful and I had difficulty charging the battery because it wouldn't stay in place. I called the doctor who said he'd need to see me to determine the course of action. Long story short, I ended up having go back in and have the battery stitched down. Or so I thought. When I actually got into the pre-op room, they decided moving the battery to a new location would be the best option, so I got to do half of the first surgery all over again! WOO HOO! After another three-night hospital stay, I was back at my parents house and am stuck in bed, hence all the time for typing all of this out for everyone to read (I just had the second surgery on Nov 14th and was released from the hospital on the 17th). While I do not experience full relief from it, the SCS has by far been the best move yet. It only covers my legs, but since I have RSD in my legs, neck, shoulders and the newest place, ears, this is just a dent in the road to symptom management. I am hopeful and excited for the future. Although it's no cure and I still have parts of me which are burning and stinging as we speak, there is one less part of me that is experiencing the full pain of which this disease has to offer.
Spaghetti Leads Paddle Leads Battery/Brains
My bed on wheels (Navigator hospital bed referenced above)
The treatments are far from over. This disease is known to spread until it takes over your whole body. Fortunately for me, I'm not there yet, but I know several people who are. This disease is known as "the suicide disease" because the pain is so intolerable, people choose death over living with this pain and loneliness. It is sad to me there isn't more awareness about this disease and the effects it has on people because maybe, just maybe, one of these deaths can be avoided. There are several doctors out there who know nothing about this disease, which is unbelievable! The RSD community is a tight-knit group and everyone is so supportive of each other because we understand what others are going through. I wish I could say this monster was the only thing I have going on in my life right now, but it's not. Because I have already made this so long and half of the people who started reading quit due to its' length, I'll spare you all on the details of my other struggles for another post. I promise not all posts will be consumed with RSD details, but as you can see, it's a major part of my life. It's a lonely, depressing part of my life, but I choose every day not to let it take over my happiness. I think, for some reason, I was chosen to have this disease and if I can use this blog to make a difference in someone's life, then maybe that's why. We all have our struggles and I always say it's not a contest who has it worse. I think the better way to think is how we can help someone else through their hard times. I challenge you to think of something you can do to help someone, no matter what you are going through. I promise, it makes all the difference in the world. I look forward to continuing to share my journey and life with you all. Thanks again for reading.
Until next time :)
So, my pain started about six years back. I was practically pregnant twice in a row, but during my second pregnancy, on Christmas Eve 2006 with my sister and 7 month old son in the car, we were hit by a drunk driver on our way home from our church's service. The driver who hit us was going about 80 and we were going 35 (that was the speed limit). Our car spun more times than I can count, jumped a curb and right as we were about to start flipping, we slammed into a pole on the driver's side. Long story short, chaos ensued, we were all rushed to the hospital and my son was kept over night. Since that time, I had horrible back/neck pain and my foot was always bothering me. I was pregnant, so back pain was normal, but once I got her out of me, the back pain didn't stop. That's when I decided to start seeing a doctor to figure out what was going wrong.
Over the next few years, I saw many doctors who either thought I was crazy, a junkie looking for a quick fix or just had a pulled muscle. No one took me seriously and I began losing faith in the medical community. I quit seeing my neurologist for my brain cyst, quit seeing my urologist for my kidney stones, put off seeing a doctor for the cysts I developed under my tongue and refused to go to any check-ups. If no one was going to listen to me and they were either going to write me off or write me a prescription, I was done paying them one more cent of my money. I wanted help. I wanted answers. Most importantly, I wanted relief.
And then, one glorious day, I passed out while getting in my car. I was sent to the hospital and admitted for a heart condition known as SVT (Supraventricular tachycardia- say that five times fast). During my stay at the hospital, I fell in the bathroom, either from the heart condition or because my blood pressure dropped too low, too fast. I was already having pain, which they dismissed but because I fell, they decided to do an MRI to make sure nothing major had occurred. Well, the results came back and showed I had a herniated disc. HALLELUJAH!! Seriously, go with me, this really is a good thing. The cardiologist recommended I see a specialist for pain management. I had serious reservations as I envisioned walking into a room full of people waiting for their next fix. But, I bit the bullet and made an appointment.
I walked into the office: nice staff, big waiting room, normal looking people. This place was not nearly as scary as I thought it would be. I told the doctor why I was referred to them and he seemed kind and genuinely concerned. Then, he asked the questions: what kind of pain are you having, where is your pain and how long have you had it? I spent the next 30 minutes crying, trying to talk through my tears explaining how many doctors I had seen, how I was written off, what my pain felt like, where it was located, etc. Once I was done, I looked up at him expecting to see the look I had seen so many other times: the "wow, this girl is crazy and needs to be institutionalized" look. But instead, to my surprise, I saw a look of compassion and understanding. He started talking, explaining what I was experiencing is a real thing, with real symptoms with a real name. He gave me information on both the Fibromyalgia (which I self diagnosed thanks to all those commercials on TV years back) and RSD/CRPS. Fibromyalgia I knew. This one with all the letters, I didn't, but I knew one friend who had told me of her diagnosis, so I thought I'd start there. My doctor started me on a huge medication routine and told me of the many different treatment options. That night, I went home and sent a message to my friend who also had both of these diseases. She cried, I cried and she told me all she could about what I was facing. But the thing about RSD is it's fickle. Some people experience the symptoms in stages, some have it come on all at once, some never get all symptoms...you get the picture. Everyone is different. I began educating myself on this disease as I wanted to know exactly what I was facing and I'll tell you what, I wish I hadn't. It was about the scariest thing I ever read about. Shortly thereafter, we started treatments.
1. Medications - I was given eight medications, some which were three times a day, some four. I'm not the best medicine taker when it comes to remembering to take a dose, but this disease doesn't let you forget. I got my routine down pretty quick.
2. Injections - I couldn't tell you the names of all the different injections we did, but some of them worked to an extent (like the nerve blocks) and others did nothing at all except make the area sore where they put the gigantic, and I truly mean gigantic, needle. We did injections about two times a month, which required sedation, a driver and some downtime after they were complete.
3. Ketamine - well, I never got to try this one. I had never heard of this, but my doctor said it was actually a drug being used on the streets. He said it was in the class of hallucinogenics. Uh, WHAT? But as he explained it to me, it didn't sound so scary and I began to be hopeful about this course of treatment. We had the time, date, everything all set up and then I got a call from the place where ketamine would be administered telling me each treatment (and he prescribed five) would cost $5000.00. I'm pretty sure I fell over when I heard that number. $25,000 for this course of treatment. Oh and insurance refused to cover it. For once split second, I wondered how much I could get it for on the streets. Ok, joking. Seriously didn't consider that. In all honesty, I still hope that one day, somehow, I will be able to afford it and pursue this treatment option. I've heard it does wonders for people and I haven't ruled out the possibility that it's in God's plan for me to be able to have this treatment. Clearly, it's just not in His plan now.
4. SCS (Spinal cord stimulator) Trial - so here's the one we finally followed through with. It starts with a trial. Leads are placed on the epidural part of your spine, on either side of it. For the trial, the leads were about as long and thin as spaghetti. They made two holes in the lower part of my back for the leads to be placed and then they ran about half way up my back (on the inside, not the outside of my skin). The battery/brain of the machine was just taped to my back since after all, it was just a trial. The only scary part was, because the leads had to have a place to come out of my back, it left two open holes where bacteria was free to enter, meaning an immediate spinal infection was a serious danger to this procedure. I wore the trial SCS for 8 days. It's purpose is to send a sensation into the affected parts to replace the pain sensation we normally feel. It's not 100% effective, but the goal during the trial is to achieve 50% improvement or better in your pain level. After wearing the trial, we decided to go ahead with the permanent implant. It's a riskier procedure and cannot be done by the pain management doctor like the trial could, so I was referred to a neurosurgeon. Again, for the visual learners, here is what the trial looked like. Just think, EIGHT days of that on your back. Not as fun as one may think.
Controller Implant - sealed to avoid infection
5. Permanent SCS implant - After about 3 1/2 months of waiting, I got a call from the neurosurgeon to have a consultation for the permanent implant! With my doctor's help, I went with a model made by Medtronic. Since the leads are placed on your spine, the sensation can change when you sit, stand or lay down as the leads are either closer or further away from your spine, depending on your position. Medtronic has a great model that has a sensor which determines what position you are in and adjusts the sensation accordingly. You can get up to two stimulators (we call them stims), implanted as the area of coverage is dependent on the placement of the leads. My stim covers from about my lower back down to my feet. I had the permanent implant about 8 weeks ago. This time, they didn't use the "spaghetti leads" but rather paddle leads. Paddle leads have a better chance of staying put rather than moving around like the "spaghetti leads". I'm sorry, I don't know all the technical terms, so just go with me. This surgery was much harder on my body. They had to chip away some bone where the leads were placed and it's hard enough having one incision, much less two, which is what is required with the permanent implant. I have one incision about midway on my spine for the leads and the other incision was on my right, lower back/upper buttocks area for the battery. Because of my tolerance for pain medication and the complexity of the surgery, I was in the hospital for about three days after the implant. That's when I got my fancy ride back to Houston in the Navigator/hospital bed on wheels. Of course I'm giving you visuals on all of these things. How can you picture it without them? Anyways, I came back to Houston to recover as you aren't allowed to bend, reach, lift anything heavier than a pair of shoes or twist. Basically, everything you have to do to take care of kids. About four weeks into my recovery, I noticed my battery, which was supposed to be anchored down was practically flipping inside its' little pocket of muscle it was in. It was painful and I had difficulty charging the battery because it wouldn't stay in place. I called the doctor who said he'd need to see me to determine the course of action. Long story short, I ended up having go back in and have the battery stitched down. Or so I thought. When I actually got into the pre-op room, they decided moving the battery to a new location would be the best option, so I got to do half of the first surgery all over again! WOO HOO! After another three-night hospital stay, I was back at my parents house and am stuck in bed, hence all the time for typing all of this out for everyone to read (I just had the second surgery on Nov 14th and was released from the hospital on the 17th). While I do not experience full relief from it, the SCS has by far been the best move yet. It only covers my legs, but since I have RSD in my legs, neck, shoulders and the newest place, ears, this is just a dent in the road to symptom management. I am hopeful and excited for the future. Although it's no cure and I still have parts of me which are burning and stinging as we speak, there is one less part of me that is experiencing the full pain of which this disease has to offer.
Spaghetti Leads Paddle Leads Battery/Brains
My bed on wheels (Navigator hospital bed referenced above)
The treatments are far from over. This disease is known to spread until it takes over your whole body. Fortunately for me, I'm not there yet, but I know several people who are. This disease is known as "the suicide disease" because the pain is so intolerable, people choose death over living with this pain and loneliness. It is sad to me there isn't more awareness about this disease and the effects it has on people because maybe, just maybe, one of these deaths can be avoided. There are several doctors out there who know nothing about this disease, which is unbelievable! The RSD community is a tight-knit group and everyone is so supportive of each other because we understand what others are going through. I wish I could say this monster was the only thing I have going on in my life right now, but it's not. Because I have already made this so long and half of the people who started reading quit due to its' length, I'll spare you all on the details of my other struggles for another post. I promise not all posts will be consumed with RSD details, but as you can see, it's a major part of my life. It's a lonely, depressing part of my life, but I choose every day not to let it take over my happiness. I think, for some reason, I was chosen to have this disease and if I can use this blog to make a difference in someone's life, then maybe that's why. We all have our struggles and I always say it's not a contest who has it worse. I think the better way to think is how we can help someone else through their hard times. I challenge you to think of something you can do to help someone, no matter what you are going through. I promise, it makes all the difference in the world. I look forward to continuing to share my journey and life with you all. Thanks again for reading.
Until next time :)
Sunday, November 18, 2012
Here I go...
I've never really understood blogging...I kind of thought it was for people who didn't know what a journal was. Judgmental, yes. But in my defense, I didn't completely understand the world of blogs. We have Facebook, Twitter, Myspace (which I'm not sure anyone uses, but still). My point being, we have one too many ways to put our personal life, or rather what we want people to see, on display, so having a blog was just one more way of sharing life with the internet, aka anyone knows how to use a computer.
Well, I've decided to start a blog. I don't know if anyone will read it, but my hope is because of what I share, it will help someone. Even if it's just one person, I will have achieved my goal. I'm going to try to summarize so you will have an idea of what I will be sharing here. Disclaimer: things not posted in this so called "summary" is not a complete list of what I will be sharing here, but it gives you an idea.
My name is Julie. I am 26 years young, mother of two and I have RSD/CRPS (whatever you want to call it), Fibromyalgia and a list of other random, unexplained ailments. RSD/CRPS and Fibromyalgia have consumed my life for the past two years. It's an invisible disease and also one not well known or understood by friends, family, strangers and even worse, doctors. I don't even know where to begin when describing what it is like to live with this disease. The description I have used thousands of times (and I ask you close your eyes for this so you can get the full effect. Well, read first, remember what I said and then close your eyes and invision): imagine emptying your veins of the blood that runs through them and then refilling them with lighter fluid or gasoline: your pick. Now, imagine lighting that match and placing it on your vein, letting the fire consume the inside of your body, flowing through your legs up into your back, spreading across your neck and shoulders, all the way down to your fingertips. And then once your body is full of fire, invision thousands of bees stinging that skin which already feels like it's burning from the inside out. If you really want the true feeling, go turn on the burner on your stove or light that fireplace and then stick a body part, any body part, right in the fire. Not above it, beside it, but right on it. Now that you have done that, hold it there for weeks, months, maybe even years. That is what a flare feels like to us. You may think it sounds a bit overdramatic, but this is what life is like for me and for the countless others who suffer from this. And the worst part is, while sometimes you can see the damage of this godforsaken hell our bodies go through each day, most days it is all internal and the only evidence of our disease is the pain we feel. To really get a good understanding, my family and friends have read through www.rsdhope.org. If you can't still can't envision the pain of this disease, maybe you're a visual learner and this would give you a better idea. See the nice red lettering? That's what I have and I like this visual because it puts it into perspective just a bit.
I feel like I spend most of my time talking about or explaining my RSD. But I've decided it's not going to consume my life. Since my diagnosis, most of my time is spent in bed, at the doctor's office or the hospital. I work from home, when I'm lucky, people do grocery store runs for me and friends have stopped asking me to go out because they know I won't be comfortable sitting anywhere too long. I don't feel sorry for myself: I feel sorry for my friends, my family, for everyone in my life who has done something for me because it seems I'm the one who always needs helping. My son Cameron, who is 6 and my daughter Ashlyn, who is 5, ask me everyday how Mommy's pain is today and at night when we say our prayers, they never leave out the part where they ask God to help Mommy's pain so we can all play together. My kids have learned how to do things themselves because they know it's hard for me to lean down to give them a bath or to stand too long in the kitchen cooking big meals. My kids will yell "Mommy, don't do that! Remember, your pain?" if I am doing something the doctor has restricted me from doing. They help me clean, they love putting laundry into the washer and then the dryer (we are working on folding and hanging), they try to make their beds and pick out clothes for the following morning. While I am so proud of them for their strength and level of maturity, inside it's heartbreaking knowing they have to do these things because on most days, I can't.
The funny part is, RSD is just a part of my crazy life. Since this blogging thing is new, I will spare you from further details on exactly how chaotic my life really is. There is a lot more to me than this disease, things I know others can relate to. So just because you may not struggle with a disease or an ailment doesn't mean this blog won't give you something you can relate to. I am happy where I am in my life. Many of my friends wonder how I don't fall apart because of everything life has thrown at me (and this is not just the RSD we are talking about). I hope with what I share, someone will take comfort in knowing they aren't alone. And I promise, there is a lot more to come...we've only hit the tip of the iceberg here. Whether you're a single mom, struggling financially or struggling in a marriage, have a disease that affects you every day or feel like the world is coming crashing down on you, just know, I have been there and I'm still alive and walking (well, somedays with a cane, but you get my point). Your circumstances don't define you, so if you feel they are, take a deep breath and think long and hard about who you want to be and start defining yourself.
Until next time...
Well, I've decided to start a blog. I don't know if anyone will read it, but my hope is because of what I share, it will help someone. Even if it's just one person, I will have achieved my goal. I'm going to try to summarize so you will have an idea of what I will be sharing here. Disclaimer: things not posted in this so called "summary" is not a complete list of what I will be sharing here, but it gives you an idea.
My name is Julie. I am 26 years young, mother of two and I have RSD/CRPS (whatever you want to call it), Fibromyalgia and a list of other random, unexplained ailments. RSD/CRPS and Fibromyalgia have consumed my life for the past two years. It's an invisible disease and also one not well known or understood by friends, family, strangers and even worse, doctors. I don't even know where to begin when describing what it is like to live with this disease. The description I have used thousands of times (and I ask you close your eyes for this so you can get the full effect. Well, read first, remember what I said and then close your eyes and invision): imagine emptying your veins of the blood that runs through them and then refilling them with lighter fluid or gasoline: your pick. Now, imagine lighting that match and placing it on your vein, letting the fire consume the inside of your body, flowing through your legs up into your back, spreading across your neck and shoulders, all the way down to your fingertips. And then once your body is full of fire, invision thousands of bees stinging that skin which already feels like it's burning from the inside out. If you really want the true feeling, go turn on the burner on your stove or light that fireplace and then stick a body part, any body part, right in the fire. Not above it, beside it, but right on it. Now that you have done that, hold it there for weeks, months, maybe even years. That is what a flare feels like to us. You may think it sounds a bit overdramatic, but this is what life is like for me and for the countless others who suffer from this. And the worst part is, while sometimes you can see the damage of this godforsaken hell our bodies go through each day, most days it is all internal and the only evidence of our disease is the pain we feel. To really get a good understanding, my family and friends have read through www.rsdhope.org. If you can't still can't envision the pain of this disease, maybe you're a visual learner and this would give you a better idea. See the nice red lettering? That's what I have and I like this visual because it puts it into perspective just a bit.
And it gets worse: the victims, and yes I say victims, of this disease, are not the only ones who suffer. It's the children, the parents, the siblings, friends...pretty much anyone who is in the life of an RSDer (or should I say, those who stick around after they have seen how much maintenance and time goes into this disease). I, personally, have lost many friends and even family because this was too much for them. But, for those I've lost, I've gained many more who I know will stick by me no matter what happens. It is an isolating, gruesome, depressing disease that wreaks havoc on people. But the one thing I do know is, those I am friends with who have it are some of the strongest, most amazing people I know. If it weren't for this debilitating disease, there are many people who would not have entered or left my life, both of those being of equal importance. The ones who have left my side, I don't think of negatively. I simply think of it as addition by subtraction. You may have to think on that one for a minute. :)
I feel like I spend most of my time talking about or explaining my RSD. But I've decided it's not going to consume my life. Since my diagnosis, most of my time is spent in bed, at the doctor's office or the hospital. I work from home, when I'm lucky, people do grocery store runs for me and friends have stopped asking me to go out because they know I won't be comfortable sitting anywhere too long. I don't feel sorry for myself: I feel sorry for my friends, my family, for everyone in my life who has done something for me because it seems I'm the one who always needs helping. My son Cameron, who is 6 and my daughter Ashlyn, who is 5, ask me everyday how Mommy's pain is today and at night when we say our prayers, they never leave out the part where they ask God to help Mommy's pain so we can all play together. My kids have learned how to do things themselves because they know it's hard for me to lean down to give them a bath or to stand too long in the kitchen cooking big meals. My kids will yell "Mommy, don't do that! Remember, your pain?" if I am doing something the doctor has restricted me from doing. They help me clean, they love putting laundry into the washer and then the dryer (we are working on folding and hanging), they try to make their beds and pick out clothes for the following morning. While I am so proud of them for their strength and level of maturity, inside it's heartbreaking knowing they have to do these things because on most days, I can't.
The funny part is, RSD is just a part of my crazy life. Since this blogging thing is new, I will spare you from further details on exactly how chaotic my life really is. There is a lot more to me than this disease, things I know others can relate to. So just because you may not struggle with a disease or an ailment doesn't mean this blog won't give you something you can relate to. I am happy where I am in my life. Many of my friends wonder how I don't fall apart because of everything life has thrown at me (and this is not just the RSD we are talking about). I hope with what I share, someone will take comfort in knowing they aren't alone. And I promise, there is a lot more to come...we've only hit the tip of the iceberg here. Whether you're a single mom, struggling financially or struggling in a marriage, have a disease that affects you every day or feel like the world is coming crashing down on you, just know, I have been there and I'm still alive and walking (well, somedays with a cane, but you get my point). Your circumstances don't define you, so if you feel they are, take a deep breath and think long and hard about who you want to be and start defining yourself.
Until next time...
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