“You may encounter many defeats, but you must not be defeated. Please remember that your difficulties do not define you. They simply strengthen your ability to overcome.”

~ Maya Angelou

 

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September is Pain Awareness Month and I am extending an invitation, to join me on my journey navigating chronic pain. Let me first warn you that, this blog will be longer than my usual blogs and some of the things that I discuss are not at all pretty. But to make this an accurate accounting of my pain journey, I can’t leave anything out.

I’ve had migraine disease since I was 16 years old, episodic and treated well with Propranolol for many years. Then as life often does, it threw a curve ball in the form of Adult Onset Asthma. I did okay for a couple of years with inhalers and was able to stay on the Propranolol. Until I started having more asthma attacks and being hospitalized, at this point my doctor took me off of the Propranolol. We tried a couple of different beta blockers, but I couldn’t tolerate them and breathing is kind of important. 

It was at this time that everything went to hell in a hand basket. My migraine became uncontrollable, this was seventeen years ago and I knew virtually nothing about migraine, except that it caused my head to feel like it could explode and I vomited all the time. The first thing my Internal Medicine Doctor did was treat the pain with Demerol injections. Nothing was mentioned about a preventive to take daily, so when I would get another horrid migraine I would call his office and ask about a pain shot. Next thing I know my doctor was talking about me being a drug seeker. When it was he who started giving me the Demerol for pain! 

On top of all of this, the doctor’s office I was working for tried to fire me while I was in the hospital. The head of Human Resources let them know that they could not do that. The Family Practice Clinic I was working in, was owned by the hospital that I started working for when I was 16. To make a long story short, they found another way to fire me. When I was discharged from the hospital that last time, before going back to work, I had seen three different doctors as consults. Between all these doctors, I left being on twenty-three different medications. Yes twenty-three, that was not a typo! It’s a wonder I knew which way was up!

They used the excuse that I wasn’t doing my job properly, not because of my illness, but because I was overmedicated. Move along now, you’re defective you can’t do your job properly, as for the 21 years you’ve worked for this hospital, they don’t mean crap! The many times that I had worked a double shift, in a department because someone called in. My loyalty to the hospital counted for nothing! That was one of the lowest days in my life! One of the doctors was especially unkind to me, a couple of years later I heard he had started getting migraines. Then he had an affair with his office nurse, the entire practice split up. He no longer works for that hospital. The hospital itself was bought out by SSM a few years later and is now in the process of being bought again by The University of Columbia, the hospital I use. Karma is a bitch!

In July of that year I had a Total Hysterectomy, in October I was diagnosed with Fibromyalgia. When I asked my doctor what could be done for the pain, his response was to take hot showers. So helpful…like a person can stand in the shower all day. Now remember I had a hysterectomy, fibromyalgia and chronic migraine. Giant moods swings from the surgery and horrible pain from the chronic migraine and fibromyalgia, neither which were being treated. I was also deeply depressed, very deeply depressed. Our oldest son Nathan, had just moved out on his own. Our very best friends at that time, moved away. I retreated into myself and sat curled up in a ball most of time.  I started cutting myself, it was something I could control, I had absolutely no control over anything else in my life.

I was headed for a crisis, I just didn’t know it at the time. I started having thoughts of suicide and of course I kept all of this to myself. The depression, hopelessness, cutting, the big black hole that I felt myself falling into. Driven there by such horrible pain, with no end in sight. All I wanted to do was escape it all! I had no one to talk to, who was going through the same thing I was. No one to reach out to, it was just me and my thoughts. But when my thoughts actually took me to the point of making a plan to commit suicide, it scared me so badly that I called my doctor’s office. I really didn’t want to die, I just wanted help. Their Nurse Practitioner was there and I knew him very well and vice versa, he was gentle and very kind! He set everything up with the intake counselor at our local Psychiatric Unit. That phone call was the best thing I’ve ever done for myself! I spent seven days inpatient there, the Psychiatrist helped me more in seven days, than my Internal Medicine Dr. had in a year. He started first with the depression and anxiety, them the pain issue, he actually prescribed pain medication for me. Basically because he realized that all of my problems stemmed from the same source. Pain! Treating my pain, depression and anxiety, made a world of difference. No more cutting, no more suicidal thoughts, I began to feel like myself again. I continued to see him and a therapist for quite a while, as for my Internal Medicine Dr. I fired him and got a new one. By not listening to me, he almost caused me to take my life. I learned a lot from that and will never again put up with a doctor who is not willing to listen, or treats me with disrespect.

Finding a good headache specialist is not an easy task, especially if you live in a rural area. My sister had some contacts in the Chicago area, who told her about The Diamond Headache Clinic. So I was able to make an appointment and she drove me there for my first appointment. Chicago is a six-hour drive one way from where I live. My appointment was with Dr. Seymour Diamond. I went prepared to stay and I was admitted. Their standard operating procedure is to take new patients off of any medications that have addictive properties. It took me seven days before I started having any withdrawal symptoms, but when they hit, WOW! Not pleasant at all! I went to Diamond for three years, until an insurance change caused me to be unable to continue. I learned a lot about migraine will going there, much more than I had before. Their inpatient program included, group therapy, biofeedback, physical therapy, dietary classes, art therapy, pharmacy classes, tai chi, they covered the whole migraine.

I’ve been with my current headache specialist for over tens years and I absolutely love him. From day one, he has worked with me on my treatment plan. He is kind and considerate, he doesn’t just treat my migraine, he also treats my fibromyalgia, insomnia, depression and anxiety. When I’m in a long migraine cycle and need to come in for DHE infusions, plus the other medications we add-on. I can just email his office nurse, to let them know what’s been going on and they set up the admission. He has never once doubted my word or questioned me about the need to be hospitalized. We show each other respect, a partnership that has worked very well for more 10 years.

The hospital that I use is a teaching hospital, so I’ve seen many residents over the years. And have educated many about migraine, during my last hospital visit, I had a resident who for whatever reason, couldn’t wrap his brain around fibromyalgia. As I tried to answer his questions, his arms began to cross against his chest, I knew then he wasn’t buying what I was selling. My husband even explained that during a flare, the slightest touch from him caused me great pain. I just left it at that, fibromyalgia is often stigmatized as much as migraine is. As he watched me struggled with pain over the next couple of days, his demeanor changed, he became more considerate of my pain. His seeing was better than words I could have continued to throw at him.

Barring a miracle, I’ve come to accept that I will live with chronic pain everyday of my life. My baseline migraine pain level is a three, pain from fibromyalgia fluctuates depending on, the weather or if I’ve done too much. I also have degenerative disc disease throughout my spine, I have been dealing with a lot of low back pain from that. Sometimes the pain is so bad that I can hardly walk, I feel like a 54 year woman in 90-year-old woman’s body’s. I have an appointment with Pain Management to work on some of these issues.

How I live that life, is up to me. On my good days, I enjoy time spent with my husband and my kitties, Belle and Sugar. Reading, which is my passion!  On bad days, I will still enjoy time spent with my husband and kitties, I just might be asleep on the couch! I will still read, unless migraine pain level is too high. But I will never again allow migraine to steal two years of my life! I am not trying to trivialize pain, not by any means, living every single day with chronic pain is hard, no it’s hell! I’m so very thankful that I don’t have to do this alone anymore! I have support now, friends who know what’s it’s like to go through such pain. Friends that I can reach out to and I know that I will never, ever get to that awful place I was years ago, when I felt the only way was to end to my life. Supporting and encouraging one another is vital, I’m living proof! Tears are running down my face as I write this, if only you could see inside my heart and understand how much I love all of my fellow pain warriors. Never give up on one another!

“Pain nourishes courage. You can’t be brave if you’ve only had wonderful things happen to you. ”    

~ Mary Tyler Moore

Live with hope,

Roni