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Inspirational Quote: Strong People

July 18th, 2016 · 1 Comment

For the rest of the summer, I’m sharing some inspirational quotes with you.  I’d love to hear what they mean to you.  You’re also invited to copy them and carry them with you each week for perspective and a pick-me-up when things are tough.

I've never met a strong person with an easy past.:

“I’ve never met a strong person with an easy past.  Unknown”

Have your own favorite quote?  Please share it with me here and I may use it as our inspirational quote one week.

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Pain Pathways magazine, July 2016

July 14th, 2016 · No Comments

The July 2016 issue of Pain Pathways magazine is now published.  Enjoy!

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Inspirational Quote: Don’t Fake It

July 11th, 2016 · 1 Comment

For the rest of the summer, I’d like to share some inspirational quotes with you.  I’d love to hear what they mean to you.  You’re also invited to copy them and carry them with you each week for perspective and a pick-me-up when things are tough.

“Don’t fake being okay.  You only hurt yourself.  Be real with what you’re going through, just don’t let it consume you.  Balance.”

Have your own favorite quote?  Please share it with me here and I may use it as our inspirational quote one week.

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It’s OK to Be Scared and Need Time

July 5th, 2016 · 1 Comment

This is a winning entry by Kathy for our Write Something to Share contest.

So what do I do now?

I’ve posted in the past about the headaches I have.  They are sometimes worse, sometimes better.  A lot like life, I guess.

About 2 months ago, my joints were hurting and stiff, especially in the morning.  I had a blood test and was diagnosed with Rheumatoid Arthritis.  A few days later, I’m in a rheumatologist’s office, and it’s definitely that.

In her book “Out of Joint”, Mary Felstiner says some people are struck dumb when they are told they have this.  I was definitely struck dumb.  So numb in my shock I couldn’t even cry.  I would lie awake at night staring at the ceiling in shock thinking, “What the hell just happened?!”  My first thought in the morning was, “Did I just dream that I have some terrible disease?  Is this even real?”, until I tried to roll over.  The stiff joints were all too real.  The methotextrate, oddly, put my migraines into remission but stole all my tears.  I dreamed crying all night, and woke up dry-eyed and stoic in my exhaustion.  I darkly decided that people on this drug are not brave, just too damn tired to care what happens to them.

So what do I do now?

I think it’s ok to need time to adjust.  The doctors see people like me every day, so they are somewhat comfortable with the disease.  It’s routine and they are even slightly bored with the idea.  I find that if you have a somewhat normal reaction to the news – shock and horror – they get upset, accuse you of overreacting.  They tend to expect you to be fine with the idea, immediately.  We are human beings and we need time.

It’s ok to be scared.  My first thought after hearing it was, “My life is over.”  I dared not voice it, because I would be lectured on my attitude.  In a sense, I was right:  my life, as I knew it, is over.  The disease is very scary.  I’m afraid I will look like the pictures on the internet.  I’m afraid the medicines won’t work for me.  This is normal and understandable.

This disease used to be called ‘the crippler’, but I’m not crippled yet.  I want to continue to live as normally as I can, for as long as I can.  I don’t let people do stuff for me when I can do it myself.  This is easier for me than others as my arthritis doesn’t hurt that much yet.  It is a tricky balance, accepting enough help so you aren’t exhausted but retaining a somewhat normal life.

Thanks to Kathy for her reminder to give ourselves time to adjust.

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Making Comparisons

June 27th, 2016 · No Comments

This is a winning entry by Mary Beth for our Write Something to Share contest.

We all do it.  Each of us compares ourselves to others.  As someone with chronic pain, I also compare myself to my pre-illness self.  There was life Before Pain started (BP) and then life now, After Pain began (AP).  So now, there are even more comparisons to choose from.

When you notice others’ strengths, it’s common to feel inadequate in comparison.  Your self-esteem takes a hit.  But why do we compare ourselves to others anyway?  If our observations make us feel bad about ourselves, it’s an unhealthy habit.

Having comparison-itis means you compare yourself to another’s abilities or achievements compulsively.  Comparing can be harmful if you dwell on it.

Now, think of it as a mosquito buzzing around you.  The mosquito is a comparison-itis bug.  If you step away from the insect, you can avoid being injured.  But if you hang out in a swarm of mosquitos all day, you’ll be bitten for sure.

Let’s consider the comparison-itis bug at work.  Your neighbor, Susan, is healthy and has a full-time job.  Alternatively, you can’t work due to your pain and disability.  You see Susan outside, tending her garden after work, and jealousy starts to build.  She’s already worked 10 hours, and now she’s planting seeds on her hands and knees.  You’d love to be able to do either of these.  Susan has stamina, while you don’t, and then, suddenly—buzzz – you’ve been bitten.  You’re obsessing about Susan’s accomplishments, and feel deficient as a result.  The comparison-itis bug found its target.

But, in reality, measuring you against Susan is like comparing apples and warthogs.  It’s ridiculous.  Apples are great to find in your kitchen.  But if you wander in the kitchen at 6 am and find two warthogs cleaning out your pantry – yikes!

But what can I do?

If the comparison-itis bug bites you, there is an antidote to protect yourself from future harm.  When you feel it sneaking up on you – stop – and change gears.  Then shift your focus to gratitude.

A gratitude practice is an excellent first line of defense.  Once a day, write down 3 things you appreciate in your life.  It can be your dog, your apartment or having a car to drive.  Consider what makes you smile during your day.  Look for the little things, like getting a parking spot, talking to a friend, or watching a favorite TV show.  When you make gratitude a habit, you start looking for positive things to record.  This is quick, easy and free.

A second way to repel the comparison-itis bug is to look at what you envy in others.  Then, use it as an opportunity to work on a goal for self-improvement.  It could be related to what you admire in another or not.  Make it something within your control.

Let’s say your friend goes to yoga 5 times a week, and you feel jealous of her abilities.  Find a form of exercise you can do.  Next, set a realistic goal, such as working out for 15 minutes, three times a week.  You shift the focus back to what you can do.  Then your progress gives you a sense of accomplishment.

Overall, you feel more content after practicing these approaches.  You can even be happy for others’ good fortune.  After all, life is not a zero-sum game.  When one person gains something, it doesn’t mean you lose something.

People will always compare themselves to others.  But you can keep the comparison-itis bug at bay.  If you see it coming, stop and change your direction.  Focus on your own path.  So stay positive, work on yourself, and remember – you’ve got this.

Thanks to Mary Beth for her wise thoughts.  Here are 2 more articles that you might like about a gratitude practice:

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A Saga About Pain

June 20th, 2016 · 1 Comment

This is a winning entry by Carolyn for our “Write Something to Share” contest.

When I was 17, I was diagnosed with scoliosis and was watched for 6 months by orthopedic surgeons to see if the curvature would continue to bend.  (The joke was on them.  It takes longer than 6 months for the spine to bend!)  The doctors then dismissed me and said I was good to go.  Twenty-eight years later, married with two children and living in the Boston area, my husband and I were in the office of a scoliosis specialist for children.  He saw me because a friend of my husband’s told him I had scoliosis.  When I walked into the room, he took one look at me and said, “You don’t have scoliosis.”

“Yes, I believe I do.”  I didn’t know what else to say.  “Well, we’ll see about that.”  Then he ordered a set of x-rays.  After a little while, his assistant called me back into the doctor’s office.  “Mrs. R, you most definitely have scoliosis, and you need surgery as soon as possible.”  I stared at him for a few moments and said, “I need my husband in here if you are going to talk about surgery.”

From that point, I had Harrington rods placed along either side of my spine to help the 65-degree curvature of my back.  It was less than a ¼” from my lung, and if we waited too much longer, I wouldn’t be here to write this article.  During that surgery, arthritis was found in the lower part of my spine, but it wasn’t mentioned to me.  Since that surgery, I have never had problems with my upper back and the fused rods of my spine.  My problem has always been in my lower back.

A neurologist in NC promised me he could take my pain away and performed a lumbar fusion on my lower back.  But that didn’t work.  Five years ago another doctor in NC performed a sacroiliac joint fusion on my lower back.  He told the insurance disability company that he cured me, but he told me the different activities I should not do, including not to go back to work.  With that mix-up, I ended up getting a lawyer and paying him 1 month of my disability payments so the disability insurance company would begin the payments again.

Now I have a spinal cord stimulator implanted in my body.  A spinal cord stimulator (SCS) is an interesting instrument and has given many people their lives back.  I did a lot of research on the SCS and interviewed people who had them implanted to find out how they were doing.  Everyone seemed to be pleased, so I decided to take a chance on it.

First you have to go through a psychological test to make sure you understand what the SCS is and what the doctor will be doing.  Before the doctor implants the SCS, you go through a trial of the SCS, which worked wonderfully for me.  Although the doctor was only able to get 1 lead along my spine, I had no pain, not one single bit of pain on my right side.  But my left side was a different story because the lead was not hitting the nerves on the left side.  I was on cloud nine.  Finally, here was the hope!

Do you know what it is like to have pain, chronic pain and how it changes your life?  I used to teach, choreograph, and dance line dancing.  I worked out and walked.  I played with my granddaughter and enjoyed picking blackberries for pies.  I vacuumed, mopped, and dusted the house.  But I wasn’t doing much of anything now, and I was mostly depressed.

So we finally found a doctor who agreed to put the stimulator in my back.  Every doctor before this one was afraid to implant it due to the instrumentation and scar tissue in my back.  But this guy said he didn’t see a problem.  That was a year ago, and I can say with full confidence that it didn’t work.  Oh, I may have 20% less pain, but that’s on a really good day.  A few weeks ago something happened with my lower back.  The pain was worse than it has been since before the stimulator or even the SI joint fusion.  It hit me from the lower part of my back straight down my legs.  It felt like knives going in and out, and sometimes it was throbbing or aching or stinging.  There are days I don’t even remember because of that pain.  You can ask my husband how much fun I was to be around.  I saw my doctor, and he decided to put me on the Fentanyl patch.  I don’t like to mention the patch even to my family.  There is so much controversy over the patch due to the misuse of it; most people don’t follow the instructions and end up using the patches more often than they should.  It’s been a week now, and I finally feel like this might be the ticket.

But the pain can change so fast that you learn to enjoy what you have today and try not to worry about tomorrow.  How do you cope with pain?  The best way you know how.  And if you don’t know how, then you ask for help.  Because there are people who can help you.  Check out The American Chronic Pain Association.  But get help.

Thanks to Carolyn for sharing her story!

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A Story of Looking for What You Can Do

June 13th, 2016 · No Comments

This is a winning entry by Tara for our “Write Something to Share” contest.

“But I Still Look Fine”

I used to be a very active woman.  I proudly served as a corpsman in the United States Navy for five years.  I went to nursing school and loved working in Obstetrics for twenty years.  I climbed the difficult back of Half Dome in Yosemite National Park twice, and felt alive while cycling many hundreds of miles a year.  I loved training with weights, power walking, skiing, kayaking, yoga, and many other outdoor activities.

Like many other women, I made a very poor choice of a first husband, though got a wonderful daughter out of the deal.  Raising her by myself with microscopic child support but tremendous family support, I’ve watched her bloom into a lovely woman in her own right.  Although I didn’t realize it at the time, my inner light was shining brightly.  I looked fine.

It started out as carpal tunnel, although I did not have the typical presentation.  My wrists ached and I couldn’t even get my left (dominant) arm in a position that didn’t produce horrible nerve pain.  After surgery, I fully expected to return to work as a nurse until retirement.  But, it didn’t work out that way.  My pain changed after surgery but never went away.  I made an attempt to return, because that’s what nurses do.  Diagnosed with Complex Regional Pain Syndrome, my hands, wrists and left elbow felt like they were on fire or had hot wires shoved in.  I only made it a few months.  But, I still looked fine.

It took two years for the guilt and shame of not being able to work or “pull my share” to slowly evolve into acceptance.  Needing purpose in my life, I turned to the American Chronic Pain Association and became a Facilitator for the Sacramento area.  I wanted to help others suffering from debilitating chronic pain.  Luckily, prior to being hurt, I had met the love of my life and we married nearly two years later.  God knew what he was doing when he gave me an engineer.  I would need his wonderful skills many times over.  So that I could continue cycling, he designed time trial bars so that I could ride (yes, I was always peddling) as a stoker in the back  of a tandem while he controlled everything from the front.  We toured Europe and nothing gave us more joy than the freedom in Grand Mother Nature on a bike.  A health nut, I continued exercising with my legs and taking care of myself.  I was still disabled, yet I could still do many of the things I so loved.  But, I still looked fine.

Then, nerve problems reared their ugly heads in my left leg.  I stumped physicians because none of my symptoms fit neatly into any category.  Multiple nerve entrapment surgeries later, I could still keep going.  I could still worship Mother Nature by cycling and long walks.  The recoveries were tough, but with my wonderful husband by my side, I could still be me.  And, I still looked fine.

Now, as I write this everything has suddenly changed.  I tried to do too much too fast, and I find myself suffering anywhere from walking on needles, to electrical jolts, to exquisitely painful electrocutions.  I am praying for the courage and hope to go on, and choose to stay in denial.  I can do no more than walk around the house, to the mailbox, or a light, short errand.  My physicians are trying, but I have many “extra” inflamed nerves trying to fit into the space made for one.  I’m a big scar producer requiring a repeat of previously done surgeries, and even produce scar formations the physicians have only heard of or seen at conferences.  But, I still look fine.

I continue to Facilitate for the ACPA and have added phone banking as much as possible for my heroine and Presidential Candidate, Hillary Clinton.  (This, too, is difficult as I have one paralyzed vocal cord from thyroid cancer).  I cry all the time, yet cling to hope.  As a child’s life broadens from home, to school, to the whole world; mine is diminishing just as quickly in the opposite direction.  I will go down fighting and clinging to denial.  My inner light is fading fast.  But, I still look fine.

Thanks to Tara for sharing her story.  It’s an excellent example of re-grouping and looking for what you CAN do.

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Pain Pathways Summer 2016

June 9th, 2016 · No Comments

The summer 2016 issue of Pain Pathways is out.  Great summer reading!

Click for the Pain Pathways Summer 2016.

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The Challenges of Pain When You’re Young

June 6th, 2016 · 1 Comment

This article is the prize Georgia requested for her winning article, Being Diagnosed with Chronic Pain

I don’t have to tell readers here that coping with pain is difficult.  There is the pain itself…  for some 10/10 in severity, for some enduring it 24/7, for some 10/10 and 24/7!  Having pain also means coping with the consequences of pain – the changes in relationships, in work, in hobbies, etc.  While coping with pain and its consequences is difficult at any age, there are specific challenges to having chronic pain when you’re young.

1.  Lack of skills to cope

When you’re young, you may have not yet acquired life skills to cope with pain, depression and anxiety, such as deep breathing, meditation, and relaxation exercises.  You may not have the life experience to know that life gives us ups and downs, that all of us cope with challenges, and may not yet have the wisdom to accept what is.

2.  Difficulty with not being “normal”

Adolescents have a strong wish to be just life everyone else, to be “normal” and not different.  There’s a strong desire to fit in with the crowd and be accepted.  Having a chronic illness often makes you different, strange and limited – not characteristics that help you be just like everyone else.  Someone with chronic pain may look different, perhaps due to an injury.  A person may have a rare, misunderstood disorder (like CRPS), and because she doesn’t look sick, no one can understand while she’s at school some days and not there on other days.  Chronic pain often imposes physical challenges, so a teen can’t play sports or stay out late because of fatigue, and so misses being part of the fun.

3.  Being Dependent

Adolescents also are driven to be more independent, to establish a life separate from their families.  Being dependent on family members to be driven to doctors appointments and to have your meals made for you counters this push towards independence.  Family members, especially parents, often become very involved is an adolescent’s healthcare.  This often is for good reasons, of course, but this may prevent a teen from feeling like he’s more and more responsible for himself.  Parents often check in very often about symptoms, (“How’s the pain today?  Can you walk today?  Did you take your medication at noon?), and this can feel intrusive and make you feel like a little kid.

Adolescents also don’t want to ask their friends for help, ask them to slow down, to say that they can’t do something, or change plans at the last minute.  Having chronic pain can cause all of these things to happen.

4.  The Burden of Pain

Adolescence is a time of growth – learning academic subjects, learning about yourself, figuring out relationships and sexuality, considering strengths and weaknesses, figuring out career options, etc.  The energy and time required to cope with any chronic illness takes time away from the rest of your life.  It can feel like your disease is not leaving you enough time for anything else.

5.  A Different Future

One of the best things about adolescence is that your future is in front of you.  And your future is wide open, something for you to create without limits.  Chronic pain can squash that!  Chronic pain can put limits on what you can do in the near term (I can’t take a full course load at college), or in your future (I can’t be a pilot because my energy levels and pain levels are unpredictable).  It can feel like what you are is just a patient with an illness, not a well rounded person with a full life.  It can also be daunting to imagine having chronic pain for 50, 60, 70, or 8o years.

Readers, what else do you think is hard about being a young person with pain?  And, more importantly, how do you cope with these challenges as a teen?  Thanks to Georgia for this question.

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Being Diagnosed with Chronic Pain

May 31st, 2016 · 9 Comments

This is a winning entry by Georgia for our “Write Something to Share” contest.

The moment my life changed forever was the summer of 2014; I was at a neurologist, the 3rd doctor appointment of that week, trying to find some sort of explanation for my constant joint pain. The pain is preventing me from doing anything I want, laying on the couch being my main activity nowadays. This doctor was older, white hair and a gray beard, definitely more known for his medical abilities than his bedside manner, and actually wore a doctor’s lab coat, making me think he’s a lot more important than I anticipated. At this point in my life the depression has set in and I feel I just need an answer to be able to move on.

My mom and I give the doctor the whole spiel we have said at least 100 times now to every doctor we’ve ever met about how the pain started, where it is, blah blah blah. Once we were done he looked at my blood work, checking the numerous things I’ve been tested for (all negative) and he finally says, “Well I know what this is”, in such a nonchalant way like he isn’t about to change my life forever with his next words. He says with my heart racing “its complex regional pain syndrome”. I know, kind of anti climatic, because I have no idea what it means yet, but when people ask me I finally have a name to call it, not just “I don’t know” and brushing it off.

He explains to my mom and I that I have chronic pain.  Right when I hear the word “chronic” all hope is pretty much lost in my mind. CRPS is basically what I like to call a “process of elimination diagnosis” because there’s no test for it, you only know you have it if you don’t have anything else. I lean back on the plain beige wall behind me, missing the pediatrician’s walls with the smiling fish and the chipping paint, a much simpler time in my life for sure, and study the floor. You’d think my mind would be going one hundred miles a minute, but no, its silent. I can’t really think much at all.  My mom is asking questions and getting all the information she can while I just kind of sit there, taking it all in.

The doctor tells us that there is no cure for this disease, but it can be managed with medicines and physical (and usually emotional) therapy. They ask me how I’m doing with all this and I say “good” with a soft voice, knowing my mom won’t believe it but knew she would let it go until we were alone. The doctor makes an effort to comfort me (spouting off medical stats about remission and helpful medicines) and I flash a quick smile at the lousy attempt, knowing his intentions, while I exchange looks with my mother. He starts writing down the diagnosis and tells us to go to children’s hospital to start planning out what we are going to do because this isn’t his field.

We leave the doctor’s office and I’m completely silent.  My mom starts to send out texts explaining the diagnosis to my dad, stepfather and grandparents when she stops and notices I haven’t said a word. We get in the car and she says, “Let’s get some lunch, you pick” which isn’t something my mom does often, she isn’t big on eating out, and I’m quiet for a while, acknowledging the gesture with a few solemn grunts. She stops driving in the middle of the parking lot and holds me tight, kissing my head. Her need to fix everything that hurts me can be great, but we both know she can’t fix this, so the hug was mutually needed. I hate to hurt and she hates seeing me hurt, so this isn’t a good day for either of us, so naturally we go to my favorite Chinese restaurant.  It’s completely empty so if we feel the need to cry our eyes out at least we can do it shamelessly.

We ordered some crab Rangoon and talked, not about a strategic plan about how we are going to overcome this as my mom would usually be thinking up, but about how I felt about this, my emotions, my worries. We talked for like two hours before we went home and told my brothers. They are not the kind to hug me and tell me it’s alright, and I know that, so it was completely expected when my older brother Chase went, “Eww, get away, I don’t want to catch it.” I had already talked about my feelings with my mom and had some really good Chinese food so I wasn’t as upset anymore.  Chase and my relationship mostly consists of showing love by making fun of each other so I knew what he meant. He always provides a laugh when I need it. When my stepdad comes home he tells me he’s sorry, but he’s glad I have an answer, as does everyone else my mom called to inform of the diagnosis, and I thank everyone, appreciating the support, but not yet ready to share my feelings until I have processed a bit more. It feels great to have everyone behind me, but knowing this is only the beginning terrifies me.

A few months later my mom and I are on a tightly packed schedule consisting of school (which is now only half days with online classes because walking around the entire school is an unattainable goal at the moment), physical therapy, emotional therapy, children’s hospital for pain meds, and a psychiatrist for the depression and anxiety meds since both have skyrocketed since the diagnosis.  This is of course not where I want to be in my life right now, losing all my friends to doctors appointments and not being able to concentrate in school because there is too much pain.  But I’ve gotten past denial and am moving on to acceptance. Grieving my old life was certainly a challenge, for both my family and me. The anger stage lasted quite a while, I’m certainly not proud of it, but I took it out on my family, especially my mother, for a long time. She deserved none of it of course, she is the one who understood more than anyone, but still I made her miserable. Every time I was in pain, I guess I decided she needed to be in pain too, so I’d yell at her for something stupid, thinking it would make me feel better but it only made me feel worse, which I’m sure you predicted. My mom put up with more than I thought was possible and I don’t know if I’ll ever forgive myself for putting her through that. I honestly want to pretend like it never happened and act like I’m the victim of this illness, but my mom suffered right along with me, for no reason but my selfishness. I know it was wrong, I sometimes still cry when I think about how much I hurt her, but I just have to try everyday to make sure she knows that that period in her life is over, I’m not going to take her for granted.

During these medicine changes I’ve been going through about every month or so due to my body’s extreme sensitivity to medicine’s and their side effects, the pain is getting worse. I have stopped playing piano because my wrists can’t handle it, and my depression keeps me from doing anything my pain actually allows me to do, a great combination, I know. I finally found a pain medication that took the edge off, (finding a medicine that takes the pain away is almost impossible, so “taking the edge off” is a miracle in itself).  The medication was called Gabapentin, but in return it made me suicidal so I had to go off of it. This medicine had me biking to my best friend’s house 2 miles away. Of course it hurt but I could do it, and that was a lot with this illness, any little accomplishment is huge. So when I had to go off it you could imagine my disappointment. We searched for a medicine like Gabapentin but you usually don’t get more than one medicine that helps you like that. We found a pain patch called Butrans that isn’t even close to Gabapentin but does the job (and is the only medicine we haven’t tried so I didn’t get much choice). The side effects are pretty bad, but it’s worth it for even a little less pain.

At this point in my illness, the depression and anxiety have overcome me. I’m dragging my feet behind me as I go through my days, not really caring about anything anymore. I end up going to the hospital for having suicidal thoughts. I hadn’t done anything yet but my mom and I decided it was time, and it was an amazing decision. They taught me not only about coping skills and things to deal with my depression and anxiety (as well as my pain), but I made friends with some people who go through what I do, we shared experiences and learned together, it was so comforting to know you’re not alone.  To physically see people just like you get better, or even just exist, is priceless to me. When I got home from the hospital, after about a week, I was different. I know it would make for a great story if I was miraculously cured and the depression and pain went away instantly, but this is a true story not a fairytale, so sorry. But I did change. I realized that my life was valuable, I realized that it could be worse, I realized that people are behind me, love me, and want me to succeed. I finally realized that if I let the depression rule my life, then I’ll never get better. It sounds stupid because everyone I know has been saying that to me all through this, but until you realize it yourself, they are just words. I don’t believe that there is a specific moment in your life where you are cured from depression, but I do believe that there is a specific moment where you realize you want to be, and that you’re willing to fight, through the depression, the pain, the anxiety, the fact that you’re willing is good enough.

To this day I’m still in pain, and I’m still depressed sometimes, but I feel better, and that’s all I’ve wanted. I think I’m finally aware (with the help of my big sister) that the world isn’t all rainbows and cupcakes, but it doesn’t completely suck either, and that’s all the balance I need.

Thanks to Georgia for sharing her story!

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