September is Chronic Pain Awareness Month!
I am so beyond thrilled that Chronic Pain is getting talked about and that people are sharing their stories from all over. I truly believe Chronic illness and pain never gets enough awareness.
Chronic pain comes in all different shapes and sizes, and it is definitely not one size fits all. When you wake up, its there, when you go to sleep its there, when you are trying to get to class or work on time its there. The reason why chronic pain is chronic is because it is always with you, and never goes away.
I want to bring as much awareness as I can to this issue because, in the past I would get accused and treated differently. I would get accused by some doctors, other adults, and people around me, if I was faking the pain, if the pain was in my head, or if I was making up some elaborate story to gain attention. The anger and hurt inside of me grew so much when this would be brought up, because how could someone stand there and downgrade a traumatic journey. This unfortunately happens to more people than you think.
There have been times where I would be screaming in agony and I would be sobbing to my mom, and we both didn’t know what to do. I can recall driving to our family’s lake house, which is a 6 hour ride and we had to pull over on the side of the road because my back was in spasm. my mom was rubbing all over my legs and lower back to try to relieve some of the pain as I was laying down in the back seat, screaming. I would always be so reluctant to take long drives, or do something that would take all day because I never knew if I would be able to make it through the entire trip, and or if during the trip I would be laid up in bed because the pain would be so horrific that it would take a few days to get back to baseline.
I never knew what was going to cause my back to “flare up.” It could come from sleeping the wrong way, sneezing funny, standing too long, lifting something, or sometimes it came on for no reason. During this difficult time I journaled and took notes one my phone pretty much everyday. I wrote about how that day went and how my pain was so I could keep track of it, and I could look back and remember. Here are a few that stuck out most to me:
- “1st day of school was one of the worst days of my life. I am so drained, sick, nauseas, in tremendous pain, and I am Forced to do it all over again. I’m so done and so ridiculously in pain and I’ve been crying since I got Home. And I passed out when I got home. I’m drained beyond belief.” This is a passage from my saved notes that I wrote on ( September 5th, 2013.)
- “Up all night, walking around, watching tv, writing, stem unit, ice, heat and repeat! !!! trying to get out of this painn!!! Doing this all night takes a toll on me mentally and I am in so tremendous pain…..It’s not healthy for me and I can’t deal with the aftermath that comes with this SHIT…” ( September 6th, 2013 )
- “These passed three days I have never expirienced so much pain in my life. The pain in my back, butt, hips, and legs Is not normal. And to add to it I am so nauseas, sick, and dizzy, from the pain and feel like shit. I am missing a lot of Shool. We have decided to homeschool again, And today is the first football game of the season. It’s SO hard not to be there and not to participate because of this injury. Nobody understands how difficult this not only on my back but mentally. And I’m breaking and can’t deal with this… I have been crying all day because I am missing out on life.” ( September 12th, 2013)
These passages are just a few that stood out to me. There are easily hundreds more just like this that go on from 2012 until now. I don’t want these to sound like I am feeling sorry for myself. I just wanted to share them because these are as raw as they get, and so many people out there deal with this every single day and sometimes can’t talk to anybody about it. I have to admit I was VERY nervous and apprehensive to share certain details about this journey because this was such a traumatic, and fragile time in my life and sometimes you don’t get the best reactions from others. But, I want to be able to help as many people as possible and the only way I can do that is to be as honest and raw as I can!
No-one knew the extent of how bad the situation actually was, they would see a picture of me smiling and figure that I was healing, meanwhile in reality our lives were in shambles. Pain has brought on Sleepless nights, break outs from stress and pain level, hot flashes, and nausea, all came with the territory of my chronic pain.
I went through at least 2 dozen rounds of different injections into my spine. Some of them were steroid injections, which caused my face to become extremely swollen and I gained a lot of weight. This was a huge, separate struggle for me that I had to cope with but, there really wasn’t anything I could do about it. I was on several different pain medications, many MRI’s, and unique treatment sessions, you name it, I’ve tried it. I have had many complications due to medications, like ulcers, and an inflamed liver. I have dealt with many issues with migraines that I am still dealing with today. I can no longer count on two hands the amount of times I ended up in the Emergency Room for uncontrollable pain. It came to a point where the nurses knew me and my mom…
One of the biggest turning points that we had was one visit to the emergency that turned into a 7 day ordeal. I went into the Riverview ER because I was having a flare up that we could not subside and I needed assistance trying to at least get my pain down to an 8 or 9, to where I could at least manage it with ice, and medication. The doctors at Riverview informed me that they wanted to keep me overnight for observation but because I was no longer a pediatric patient, I would have to be transported to a different hospital.
On January 12th, 2014 I was transported to Jersey Shore Medical Hospital via ambulence where I stayed for several days. This was one of the most difficult times during this entire experience. I was terrified, and I was loosing hope. During my time at the hospital I met with many doctors and specialists, some were helpful and some were not, and my pain level was still beyond a 10 therefore, I was put on a pain pump. One doctor unfortunately accused me of creating the pain in my head, and I thought my mom was going to jump out the seat and attack this woman. However, I did meet with some doctors who ended up changing the game for me. They set me up with other doctors in the area and we were very productive from that point forward. I have worked with so many people from neurosurgeons, orthopedics surgeons, pain specialist, pain management doctors, you name it. I am very grateful for the hard work that everyone has put in, and we’re not done yet! I have found a new doctor recently that I am working with that has changed how I will live with pain. I travel into Manhattan for his treatments and appointments. This will continue to be a long process but I am very hopeful.
Throughout the past 5 years, pain has been a part of my life. It’s been a part of me, and it has made me who I am today. I don’t really remember what it’s like to live without pain, and how it feels to not have it with me 24/7. I still wake up with pain, go to sleep with it, and deal with it day-to-day. I have learned to how to manage it the best way that I can, and to try to do a schedule that I can physically be able to cope with. I will never be “normal” and this pain will never go away. However, I am hopeful that it continues to diminish, and I will continue to work hard to try to create awareness, and try and find different treatments plans that may help me now and in the future.
I always explained my pain and status as, “I’m holding onto a very short rope that is ripping and I just want to let go.” It makes me cry every time I think of my life this way. I have had to deal with the mental health side of things more recently than before. Depression and anxiety played a huge role in battling this journey. But, I am grateful that this process has happened to me because I wouldn’t be “me” without this struggling journey, and hardship. I continue to deal, and cope with this situation on a daily basis, and it will always be a part of what make me “Madison.”
I had to give up my young adulthood to deal with this injury, and severe situation. The only thing I can do now, is learn from that, grow from it, and continue to do my best to live a life that I can be proud of. If you are struggling with pain or chronic illness, you are most definitely not alone and there are so many people in your corner!! You got this…My best advice is DO NOT GIVE UP, because even though the light at the end of the tunnel may be extremely small, there’s still a light and there will always be hope! I was that girl laying in a dark, cold, hospital bed, thinking that it would be so much easier to give up right now…I’ve hit rock bottom, and I know what it’s like to be in a dark place. Never give up, please, even if you think it’s the only way out!! You have people who care about you, and there is a reason for all of this negativity that is being brought into your world. YOU GOT THIS.
If you haven’t read my medical journey and story check out my previous blog post that go into more detail about my surgeries, and struggles.