My Healing Journey
It's hard to put into words everything that one goes through having to deal with the aftermath of an auto collision.
Intense pain, not knowing what is wrong with you, dealing with all kinds of doctors, going to constant appointments, anxiety riding in a car when a car gets to close to you, mustering the energy to go to therapy, doing your home exercises every day, trying to organize your thoughts and make sure you tell the doctor all that you want him to know, writing down all your questions for the doctor, filling out new patient questionnaires, anxiety while in the waiting room before your appointment, waiting to be able to ask your questions, not given time to ask your questions, a rushed appointment, taking care of medical bills, not knowing when you should go back to the doctor because you are still in pain, "giving it time", dealing with lax attorneys, dealing with legal matters, switching attorneys, going through litigation, filling out paperwork, driving to appointments, taking time off, dealing with bosses when you need time off, dreading when you check your mail because of legal and medical bills, making phone calls to medical billing, not wanting to answer numbers you don't know because it may be a medical bill collector, becoming a self advocate, organizing the massive amount of paperwork you receive, answering the 1-10 pain scale at EVERY SINGLE APPOINTMENT, dealing with unexplained symptoms, worrying about paying your monthly expenses when you can't work, paying for out of pocket supplements, paying for insurance when your insurance runs out, finding new doctors when insurance changes, trying to find a chiropractor that accepts Medicare, applying for disability, being denied, reapplying, hiring an attorney, waiting, Getting disability, Disability being taken away, Appealing disability, dealing with the unknown, not knowing all the answers to your questions, not wanting to be a burden to your family, missing out on the things you once enjoyed, mourning your former self, accepting your new normal, giving up the "why me?"questions, trusting God, not wanting to be judged, feeling misunderstood, wanting to be understood. Wanting to share your story.
This is my story.
On October 14, 2006, I went salmon fishing with my Dad and his girlfriend, Jackie. We never made it. It was still dark when we set out. We were in my Dad's truck, pulling his fishing boat. We stopped for gas and I got a hot chocolate. I was sitting in the back of the cab on the bench seat. We set out for the Coast taking Highway 22 toward Lincoln City. I remember commenting that the construction had finally finished near the Dallas interchange.
He said he didn't see us. My dad tapped on the brakes. He continued to pull out. It felt like the collision was in slow motion. My dad tried to slow down. There was nothing he could do. We hit. T-Boned. I can remember it so vividly. Broken winch. Boat on the top of the truck cab.
I pulled out my cell phone and called 911. I don't remember the police or ambulance arriving. I was left in the cab for quite a long time. My Dad got out and talked to the Dump Truck driver. I remember the EMT's talking but I don't remember what they said. Jackie was taken to the ambulance to be checked out. I had hot chocolate all over my hair. Eventually, someone helped me out the driver side because the passenger side seat was broken in front of me.
I took pictures. We stood there in shock. My mom and brother arrived. My brother turned around with tears in his eyes after seeing the scene. It started to get light out. My brother drove the three of us to the hospital.
About a year later, I was in another car accident also as a passenger. A lady and I were heading home from Portland on a Civil War game day. The traffic came to a sudden stop and the guy behind us didn't. This increased everything that was already hurting!
For two years I didn't know what was going on in my body. I was really in a bad place and was barely holding on. I went from doctor to doctor, specialist to specialist. I was in physical therapy, massage therapy, vision therapy, issued prism glasses to wear all the time, chiropractic treatments. That first year, I ended up in the Emergency Room where I was barely able to walk because of a massive headache and head pressure. Test after test. Everything came back okay. I was told to "Give it time" multiple times by multiple specialists. Eventually, I found my way up to OHSU and was going to a Pain Specialist who referred me to a Pain Psychologist and another Physical Therapist all at OHSU.
In January of 2008, I ended up on my bathroom floor unable to move my entire body. I felt like a rag doll. After an ambulance ride and overnight stay and more testing, I was sent home. Advised once again to see a Neurologist. (I was already trying to schedule an appointment with a Neurologist at OHSU but the paperwork was being delayed.) Since the bathroom floor incident at any given moment by body would become like a rag doll and I would loose the use of my limbs. It also affected my posture and I would try to hold myself up and keep myself upright. It would last for a little while and then my body would return back to my new normal.
I was a Preschool Teacher at the time of the accident at the YWCA/Teen Parent Program. The job became too physically demanding so I ended up switching jobs to a Life Skills Assistant position at Cascade High School. I was trying to go to work every day. I was 24/7 nauseous, had trouble following conversations, I felt like I was going to fall over, lights were too bright, everything was too loud. I became visually overstimulated every time I left my home. My body was in constant pain. My neck hurt all the time. I fell asleep with ice packs around my neck almost every night. It was a very miserable and trying time. I was closely coming to the end of my rope.
The physical therapist at OHSU during a session finally got to see first hand what I had been trying to explain to all the doctors. I became like a rag doll right before her eyes. She got a wheel chair and sent me to the Emergency Room at OHSU. More testing... Later, she referred me to a Nurse Practitioner, Cheryl Hryciw that specializes in trying to get people to the right doctor. I had to wait four months for her appointment. She suspected a Vestibular Disorder and said I needed to see Dr. F. Owen Black at Legacy Health also up in Portland.
After two days of multiple testing including a couple I couldn't complete, Dr. Black confirmed that I indeed had a Vestibular Disorder with multiple things going on. My balance was horrible for my age. He said I had Bilateral Perilymph Fistulas and Endolymphatic Hydrops. He said no work until further notice, and no driving. He said I was an accident waiting to happen. He put me on Fistula Precautions which included no bending, no lifting over 10 lbs, no head or belly pressure, no drinking from straws, no chewing gum. I was told that I couldn't go over 400 ft in elevation, couldn't fly in a plane and that I couldn't lay flat. My head had to be above my heart at all times.
I needed Vestibular Rehabilitation Therapy for balance. I needed surgery on my inner ears. Dr. Black wanted to try a strict bed rest first to see if my ears would heal up on their own. If not then we would talk about surgery. He said the VRT before bed rest would help me recover quicker from the bed rest. I started VRT. Part of the therapy had me harnessed in and standing in a Moving platform Posturgraphy.
I voiced my concern about my neck pain and how sleeping three pillows high would not work and aggravate my neck even more. Eventually Dr. Black referred me out to a Consultant Neurologist, Dr. Grimm. Two days of appointments with him (One being very frustrating when he seemed to forget everything I had mentioned the day before) and he referred me out to a Neurosurgeon, Dr. Brett. At my first appointment Dr. Brett told me there was nothing he could do for me. Back to Dr. Grimm. Dr. Grimm had me put my leg up on his knee and asked me if anything was happening. My hand and arms were starting to go numb.
Dr. Grimm went to bat for me over the phone. Dr. Brett's office called me right away to schedule an updated Neck MRI. After the MRI results he scheduled a Cervical Discogram on my neck, right before Valentine's Day. A Cervical Discogram is a pre surgical test.
I had neck surgery in 2009, the day before my 30th Birthday. He did an Anterior Cervical Fusion going through the front side of my neck and inserting a steel plate at C5-C6. The rag doll symptoms ended. I knew it had to be something with my neck!
Dr. Black brought me off the bed rest due to chronic headaches. I had a headache every day all day long. He said the headaches didn't sound Vestibular related so he sent me out for a brain MRI. I saw yet another neurologist, Dr. Kellogg. He said the headaches were coming from C-1, C-2 of my neck and referred me to a specialized physical therapist at Rockwood Specialist Manual Physical Therapy up in Portland, Oregon. I directly came off the bed rest and started going to Portland three times a week! The therapy was successful. The headaches became manageable and was able to stop taking the prescriptions. I regained full range of motion. Before I was barely able to look up, down and side to side.
Now back to the ears. Dr. Black was gearing up to retire. He refused to do surgery because of the elevation of where I was living. So in 2010, I moved to a lower elevation and showed him a mapped out safe route from the hospital to my new duplex. I met the new doctor who would be taking over Dr. Black's practice. Dr. Wackym ended up changing the order of operations. I had the Endolymphatic Sac Decompression Surgery in September of 2010 on my left ear. He went through the back side of my ear.
I didn't feel any change right away in symptoms. If anything I felt like I traded symptoms. My walking was slowed way down. My legs would drag when trying to walk. One at a time and sometimes both. I had troubles on inclines. I was experiencing extreme fatigue. I used trekking poles when I left the house to help with walking. Dr. Wackym said the walking should gradually return and to "give it time." I had really bad days when I would be in bed all day trying to rest up. I could go a couple days and then have to rest 2-3 days. It was an endless cycle. Stores were too overwhelming for me. Being in crowds or going anywhere wiped me out.
In 2013, I finally had the Perilymph Fistula surgery on my left ear. It was a little Deja Vu of having surgery right before my birthday again. I did 2 months of bed rest following. I didn't feel better right away like the doctor said could happen. Again, Dr. Wackym said "give it time." My Husband Shawn (boyfriend at the time) came down on the weekends and took time off work to be with me at the hospital. My Mom helped me again during this second round of bed rest. This one was a little shorter but for some reason was a lot rougher.
I finally got put on Disability and Medicare. Dr. Wackym didn't take Medicare so I had to seek a new ENT doctor, Dr. Wackym suggested Dr. Angh at OHSU.
I also had to find a new place for Vestibular Rehabilitation Therapy. I ended up returning to Northwest Rehabilitation Associates for VRT and got to work with Mike Studer. I was extremely weak from the bed rest experiences. After assessment Mike also had me see the Occupational Therapist for strength building. I was so weak I could barley hold myself up while laying on half of a foam roller. I gained strength and my walking improved dramatically working with Mike. I was able to walk down the aisle without any shuffling when Shawn and I got married in 2014!
After our honeymoon I came back with an ear infection from snorkeling in Hawaii. I ended back in Dr. Angh's office and also found that I had a perforated ear drum. Before the wedding, I had found out that I had significant hearing loss also known as Conductive hearing loss. It was possibly due to my last ear surgery. I was told the surgeon may have fused the bone that normally vibrates for hearing. This was the only symptom of a Vestibular Disorder that I didn't have so it was pretty frustrating to now be experiencing it. Dr. Angh said we could revisit the hearing loss after we were married.
In January of 2015 my walking issues returned. Symptoms held on. The fatigue and general body pain continued to be my every day experience. The nausea was more tolerable. I could tolerate going into stores and being in church a little better now. Although it still effected me. I never felt rested when I woke up. My mind felt tired all the time as well. Now, that I was on Medicare I had a general doctor, Dr. Eller. I kept going back to him. He did tests and blood work. Everything came back relatively good. I was also having increased pain in my left hip. I had a hip xray that came back good and a hip MRI that showed I had a labral tear in my left hip. I was referred out to Hope Orthopedics. I was given the option of surgery and said they will be here for when I need them. I have decided to wait on the surgery.
At the end of June 2015, I had surgery to insert a BAHA to help with the conductive hearing loss in my leaft ear. A Bone Anchored Hearing Aid. A screw was drilled into my skull to hold the abutment. The Processor snaps onto the abutment and is turned on to hear. The surgery site had to heal 3 months before I was able to use it. At my pre operation appointment I got tears in my eyes when the lady strapped an example of how it would sound. I was shocked at what I was missing hearing wise. I've had some issues with it which included having a second surgery. Dr. Angh opened it up to see what was causing the skin irritation around the abutment. Other than that, I love it and being able to hear better.
Finally, at an appointment Dr. Eller explained Fibromyalgia to me. (It was in my chart from 2015 but was not explained to me) I kept asking about it and he finally agreed to send me to the OHSU Fibromyalgia Clinic. In August 2016, I got a confirmed diagnosis. The lady at the appointment said I indeed have Fibromyalgia. It was a one time appointment. The take aways were to pace myself during the day and to find sit down hobbies. Feeling a little disappointed, I decided to try to change my mind set and incorporate breaks during my day.
In September 2016, I got a letter in the mail saying they were going to take away my Disability. They didn't have any of the Fibromyalgia information. I drafted an appeal letter, got it stamped at the Social Security and was handed more paperwork. I ended up going back to the attorney who originally helped me get on Disability and handed the copies over to him.
About the same time, I discovered a Fibromyalgia Clinic in Salem. I went to an appointment and the doctor had a bunch of in home testing that I did and mailed out. Shortly after it was brought to my attention that my Insurance ended. I also found out the benefits ended too. The attorney was unwilling to help so I fought for 9 months trying to get the $4,000 worth of medical bills paid for and the benefits to be reinstated during the appeal process. So thankful that is taken care of now!
In May of 2017, I had surgery for the the perforated ear drum by Dr. Hullar. He said while he was in there he could do an exploratory surgery to see what is going on with the hearing loss. This would be a stepping stone for a second surgery to possibly reverse the conductive hearing loss. He would put a steel piston in the bone. He ended up drilling my ear canal wider to prepare for the next surgery. I was told the recuperation time would be up to a week. My recovery was over two weeks and was very rough. I think the surgery put me in a constant Fibromyalgia flare. My whole body was in constant pain and I experienced really bad fatigue. Dr. Hullar said I can have the second surgery later in the year.
Today, I experience constant wide spread pain, tinnitus in my left ear, some nausea, never feeling rested when I wake up. Some mornings when I wake up, my body is so stiff that I have to take a hot bath to relief pain and walk better. I experience visual and noise sensitivity. Every day fatigue. Some days it is physical fatigue, some days its mental fatigue and some days it is both. I can go 2-3 days and then I am down 2-4 days. It is an endless cycle. When my body gets really run down my body gets so fatigued that my legs start dragging. Sometimes my legs completely stop working. I have to rotate my body side to side and slide my legs to move. Other times my Husband has to help me walk or carry me when my legs don't work. It is not fun at all!
I started this blog as one of my sit down hobbies. I have a strong desire to share encouragement to those living with chronic pain or to anyone walking through something tough. To share the wisdom I have gained over the past 11 years of living with chronic pain and other not fun symptoms. I want to be an encourager and a light to others.
For the past two years, encouragement has been big on my heart. I've struggled finding a place for this feeling to be expressed, to give it and receive it. I'm not always able to go to church and when I do go somewhere to be social I know I will be tired from it later. I love how social media provides a platform to be able to share and stay connected.
Thanks for reading!
Love and Prayers ❤