"The Life of Someone Disabled: The Genesis"
February 17th, 2008 derailed me from one life and onto a busted up roller coaster ride of horrors. I was rear ended in a car accident by my now ex fiance'. His truck was fine, but my car was totaled and I would come to find out I wasn't much better - the accident tore and bulged my L3-L4 in my spine which led to a Posterior Spinal Fusion on September 30, 2008. I was 23 years old. I was later diagnosed with Failed Back Syndrome; meaning the bone they took from hip fused, however, there was too much scar tissue that developed in between the titanium and bone leaving me with lower back pain for the rest of my life and 3 types of nerve damage which makes walking very painful. For 4 years I couldn't walk without a cane and I fell often due to my pain and weakness in my right leg until I was introduced to Radio Frequency Ablations. My doctor takes a hot laser and severs the nerves in my spine, consequently cutting off the communication to my brain and it has been nothing short of a miracle! Nerves do regrow so, I have to undergo bilateral RFAs every 6 months.
So much has happened since the accident. It's been like an awful game of medical Jenga... Before my fusion, we tried to save my disc and I was on Medrol Dosekpak (steroids) for 3 months and also had 3 Corticosteroid injections with Fluoroscopy. Obviously, it didn't work. After my Fusion, I was sent to a pain managment center and, there, during the course of a year, was given SEVEN corticosteroid injections back to back every month I went. He said it would help and I was in so much pain I trusted... and in my naivety came something absolutely horrendous. Around August 2009 I was with my family at a restaurant about to eat breakfast when I suddenly felt ill.. I made my way to the bathroom and, thinking I was going to be sick, barely made it onto the floor. The latter was all I remember. My Mom finally came in to check on me 15 minutes later. She roused me and I was pale, drenched in sweat and still on the floor. This would be the beginning of many times I would lose conscientiousness.
It was until January 2010, a trip to the ER... a roundabout with the cardio guys (and cleared) and finally to the Endocrinologist that I found out I had Pseudo Exogenous Cushing's Syndrome. I was fighting for my life right before everyone's eyes and I had no idea what was going on. In regular Cushing's your Cortisol is very high, but since mine was Pseudo (meaning looks like) Exogenous (from an outside source, aka STEROIDS), mine was low, as in Addison's. Normal Cortisol is around 20, when I finally saw my Endocrinologist in May 2010 my Cortisol was 0.6! All we could do was wait for my Pituitary gland to "reboot" so my adrenals would work normally. When my P.E. Cushing's arose, so did many other chronic ailments. Literally every month I was being Dxed with something new - from Stage 4 Endometriosis (I've undergone 2 surgeries for it now), Hypothyroidism, Gastroparesis, Interstitial Cystitis - all sorts of fun stuff! 30 chronic crap in total. From ONE accident. I finally went into remission from P.E. Cushing's at the end of Dec. 2012. It was a living hell and when I got my blood work back with everything normal I literally cried! I thought nothing else could possibly happen and this would just be my life now.
2013 was somewhat uneventful as far as health issues, except I felt like I was being drained of all my energy - I almost didn't believe my P.E.Cushing's was gone. I felt something was wrong. When I listen to my body I'm never wrong. Which would come into light in 2014. My family did have some family hardships: My Mom lost her Father in October and then My Dad had a heart attack on my birthday, November 13th and ended up spending 21 days in the hospital; many of them in ICU! It's been a very confusing and hard time. But I am so thankful to have both my parents and that my Dad is still here!
Dec. 31st 2013 I had surgery and hemorrhaged which was absolutely scary and painful. I recovered from the surgery and moved onto the next item on the list which was a bilateral RFA in February and it took me about 6 weeks to recover because something wasn't right. Then I saw my Endocrinologist in May (2014) and he asked if anything else was bothering me and I described my upper right quadrant pain near my ribs. I had to get 2 MRI's done for my pain doctor and so I also scheduled the ultrasound he wanted for the abdomen. I did the ultrasound and then the MRI's and I come out and the tech said the person reading the scans wanted more of my liver... I said, "Hmm well that can't be good..." I get a call a few days later on a Thursday from the nurse at my Endocrinologist's saying there's something wrong with my liver and I need to find a Hepatologist within 24hrs. I was in shock, but I had a great Gastro doc and there was a Hepatologist there and surprisingly was able to get in the next day... She ordered MRI's, now we're in June. She says I have tumors on both my left and right lobe. There were/are 8 tumors on the left lobe and the 1 large on the right lobe. She told me, however, they're Focal Nodular Hyperplasias and not to worry because they don't become cancerous. I was referred to a surgeon though since the one on my right lobe is so massive. (It was pushing on my kidney and literally had no room in the area so it just tried to 'make" space).
My surgeon agreed to do the surgery after I said I've listened to my body and I need this out! I went under the knife July 2nd...The surgery was very telling and the recovery challenging. It turns out I had an Adenoma which looks like an FNH on the MRI... he removed my entire right lobe, the huge tumor (he's 6'4 and had to hold it with both hands - he said it was the size of an ostrich egg) and my gallbladder. They had to do a lot of redirecting of things as well.
I have now learned that I will be needing another surgery in a year to remove the left lobe tumors, which continue to grow... and apparently, they are in a "grey area" and are turning into Adenomas! Which NEVER happens... I could develop liver cancer between now and a year all because I'm trying to heal enough to have the other surgery. And the tumor they removed was very close to becoming malignant. The pathology was frightening. My Hepatologist said one month later and we would have been looking at this much differently. So, now, I'm trying to heal from this awful surgery, knowing I will have another while hoping I don't develop anything malignant! I feel like I'm in a race, but all I can do is wait by the sidelines while these tumors get to do whatever the hell they want!
All the while my rib has popped out of place, but I can't go to my neuromuscular masseuse because I can't lie on my stomach or side yet. And my spine hurts per usual. This is the life of someone disabled. I have no friends, I feel like a drain on my parents, I'm almost 30 and I have a lot to give other than my ailments, but when I reach out, no one reaches back.
I wish I knew the answer. At this point any form of human contact and interaction would be most welcomed. If you're disabled and have someone, hold them as tightly as your aching body will allow, because when you're alone for years on end and don't have the comfort or embrace of another, it's a very empty feeling. Even if you aren't disabled, don't take love or friendship or kindness for granted - they all seem so sparse these days. Or maybe it's just in my world. Hopelessly unfortunate.
With all of these things that have happened to me and the things I do have knowledge of in my future still to come, I hope I haven't lost my spirit. I lost my soul once to abuse and vowed never to lose it again; that was a despicable time and something I still have trouble letting go of since the actions of that day are still affecting me and everything in between before I made him leave when I lost who I was... I know i am stronger for it, but how vile to treat another human being in such a way - especially when they are ill and in pain.} Even then I didn't let him break my spirit. I'm afraid all of this, everything I have written... and more... has taken too many swings at my spirit and small pieces are beginning to fall away. I just want to BE and LIVE with moments of peace. How do I find people around me with commonalities when I have trouble leaving the house due to pain or because I just don't want to leave? It's not Agoraphobia, i'm not sure what it is. I have nowhere to go. It's similar to my life - I want to move forward, but I don't want to take a step...
Every time I have, look what has happened... [re-read from beginning].
In the Fall of 2015 I underwent an Embolization to reduce the size of a few of my Liver tumors. It was not successful. My new surgeon has said it is currently up to me and the surgery is "on the table" for me to choose to have or to wait. To wait... basically for them to get large enough to HAVE to remove. I'm overwhelmed from that. If only it were only that. After 2 years, I finally had another MRI of my lumbar spine. I now have 2 bulges and a fissure. If that fissure turns into a tear, I will have no choice but to undergo another fusion... The amount of time to recover from both of those surgeries would put me around 36 years old. Makes me feel sick. Also, P.E. Cushing's is still biting at my heals and I still have Cushinoid features which is not only detrimental to my self-esteem, but to my overall health.
I wish I could add positive events or uplifting memories to this update, however, there is none I can recall or to be written. I have so many ideas and plans for a future that I still cling onto with a hopeful heart; but my logical brain and breakdown of my body swings me right back into reality... a nightmare of existence where pain accompanies me every moment of every day, and more surgeries loom over the horizon where a downpouring of tears wash away my hopes and my dreams for a better tomorrow. No matter how hard I fight, something seems to always be there to drag me back down. I am in a spiral of complacency and am terrorized by pain. I wish and pray for strength and motivation daily. I just hope I am able to break free from 8.5 years of existing as a hermit in this malignant pattern.
More Recently.... As of August 7th, 2018:
I have spent the past 2 years trying to improve my stamina and quality of life. I've been able to lose 60lbs with the help of a weight loss program (through the hospital- amazing people!) I'm still extremely depressed and extremely concerned about the future... What future? Yeah... exactly...
It's taken me 2 years to have, on average, 3-4 "good" hours in a day (usually not consecutively...) I'll be 34 soon. I feel antsy because it's been nearly 11 years and I haven't traveled, or had a career or gotten married or had a child.....
I'm still not well... I have 2 bulges and a fissure in my Lumbar region, as well as a bulge in my thoracic (new areas to feel strange lol)... I get my MRI done in September for my liver tumors. They haven't grown the past 2 years, so there's a positive! I knew there had to be one of those somewhere! :)
Other than that, I am still learning what interests me as I am slowly accepting the fact that I'm no longer an able-bodied person.
I may not have been traveling or falling in love or feeling that "I've made my parents proud" thing -- but I've learned a helluva lot about who I am. I'm stronger than I give myself credit for. It's the pain that drives out any positive thoughts for myself and others; like a continuous battle to "control" this organic machine that my spirit calls home. This exhaustively stubborn, slightly damaged, amazing wonder that can relate to so many of you. I'm tired of feeling alone; being alone... It's become too hard to continue fighting on far too many days.
And, I'm trying. Most days.
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