A Painful Chronic Illness – My Journey

By Marcy Sowers

No one I ever know expects to be debilitated.  No one I have ever met dreams of growing up with an addiction or need for pain medication.  10 years ago I was a physically active, busy single mom.  I raised three children by myself for many years, worked full-time, and didn’t have a moment where I sat down to rest until the end of the day.  I was a substance abuse counselor, and I had become highly proficient at conducting assessments.  I would type the majority of my assessments as I met with my clients and the last full-time position I held was as a substance abuse counselor in a maximum-security prison.

Prior to this I had odd medical issues come up over the years, a lot of back pain, hip pain, weird allergies, hives for no reason (and I am talking full-blown fat lip allergic reaction out of nowhere), migraines, Alopetia Areata.  My back first went out when I was 22 working at the bank.  I bent over to get a tray of coins out of my coin vault, and my back completely went out.  It took a week to recover and that was my first experience with not being able to walk because of my back or joints.

By the time I was 40, I was completely and utterly at a loss for what was going on with me medically.  I spent the next several years trying to figure things out with my doctors (who honestly didn’t delve very deep or, I believe, look at the whole picture.)  Had they given a more detailed look, I might have avoided an auto-fused thoracic spine.  This disease horrifes me when I think of my children and pray to God that none of them end up with the same type of issues I did.  My sister is currently experiencing severe back pain and bone spurs.  I am thankful I am aware of what to look for and can help them if need be.  I went to many specialists, including Virginia Mason in Seattle trying to find some answers to the issues I was having.  The most telling thing from that particular foray into a diagnosis was that I was positive for Anti-Alpha Fodrin IgA (uncommon) and that I had no detectable levels of B2 in my system, which was very for odd for a Western Diet.

My disease fully manifested itself in 2010.  I was not able to walk, and had severe stabbing pain as if a joint was broken.  It didn’t just affect my feet/ankles, but it also affected my hands.  I would find myself unable to hold a cup of coffee or even a fork to eat.  This pain was so debilitating I was at a loss.  I had never been one to sit on the sidelines at my kids’ events.  I was on the go, recently remarried and completely perplexed.  I couldn’t fish anymore, for any length of time.  Sure, we have photos of me fishing, but gone were the days of me holding the fishing rod, fighting the fish to the boat.  I couldn’t do it anymore; I could take a picture and hand off the rod and reel – something I would have never done before.  My joints and my back were even far worse than ever before.  I spent so much time battling pain it consumed my life.

I ended up having my C5-C7 spine fused at the native hospital on 01/31/2013.  The surgeon there told me that if he could he would fuse the entire thing as he could tell the entire neck would deteriorate and it was just a matter of time. After the surgery I followed up with the PA at the native hospital.  Now I will tell you that almost ever appointment I had in the recent years I asked someone to accompany me.  I had become jaded with the care I was receiving and saw too many instances of the clinic utterly failing others.  I somewhat joked that if I could be the Erin Brokovich of native healthcare I would.  And if my body had the energy I would have.  But I had to focus on myself first.  I couldn’t help a single person if I wasn’t in a better place.

The PA told me after my surgery, upon physical examination, that my neck wouldn’t heal if I remained as locked up as I was.  He told me my back muscles felt like cement and my healing wouldn’t improve.  He prescribed a short course of pain medications and a benzodiazepine for muscle relaxation.  I followed through with every recommendation, physical therapy and so forth.  Several months later I was experiencing daily migraines.  I had always been susceptible to migraines but this was out of this world in the experience.  This was daily – crawl away and want to die type of migraines that did not appear to want to go away.  I continued to follow up with the native clinic and wanted answers why this was happening.

I was told that it was simply failed back surgery.  I told the doctor that the pain medication wasn’t helping so he prescribed me Meloxicam.  (Meloxicam is a strong NSAID).  This did nothing to alleviate my pain.  It helped for a very short period of time and I suffered many hours of pain.  I continued to struggle with the migraines.  He gave me one course of valium, which helped my muscles a bit but did nothing to quell the ever-present migraines that were plaguing me, in addition to the joint and back pain I had been suffering for several years now.

Now I could respect my doctor’s concern about opiate addiction; I had seen enough destruction by opiate (heroin and illicit use of opiates) in my career as a substance abuse counselor to be very cautious about the use of these medications.  But I also couldn’t function as a human being with any level of quality of life without some type of pain relief.  I had three children in school, all very busy children and I was running between football, tennis, volleyball, student government meetings and three different schools.  I was also the kind of mom who even in the worst of pain would make a full meal for dinner.  Now I have never been one for packaged meals or pre-made food.  Going to McDonalds was a yearly event for the kids and I.  I refused to give them crap food even when I was in pain.

At one of my earliest doctor appointments about my joint pain, I explained to the PA that I had severe joint pain and swelling, around the joints, but not the joints themselves.  She chastised me and told me it was probably too much sodium in my diet.  That prepared foods contain a lot of sodium.  I was a bit miffed because she assumed that I fed my family a diet full of packaged foods and fast food.  She then insinuated that it was too much soy sauce in my diet.  I was more than perturbed because I had made a conscious effort to not only avoid those things but to limit even soy sauce in our household. We used Bragg’s Amino Acids on our rice.  This was the first time I had really experienced racial stereotyping or racial profiling as it were. aside from people in high school being jerks that I was accepted into Stanford because I was native.

And this was the *native* clinic.  I had so many bad experiences over the years in the native clinic I never went without a witness.  I had seen my friends father be sent home with a stroke with ibuprofen. Thankfully his family took him to the ER instead, and sadly the effects of the stroke lingered and we will never know if it was from lack of rapid response.  I saw my uncle who had just been at the native clinic about a sore on his leg—and sent home—the same day wind up in Intensive Care and ended up staying for a week.  I had been chastised by a PA, for wearing a walking boot when my joint pain was so severe I couldn’t walk.  Normally I had episodes where just one foot was in severe pain but this instance I had both and I couldn’t put pressure unassisted on both of my feet at the same time.  I remember being pushed out of the clinic in a wheelchair crying.  The nurse whispered to me, “Use them if it helps and don’t bother with what she said.”  Several years later I felt “vindicated” by my podiatrist not only giving me two boots to wear and telling me my instinct to wear them was the right treatment but it didn’t do a thing for the shame and pain I suffered for years before.

I cried more hours than you can imagine that year in dealing with the migraines.  We had the opportunity to move to Wasilla due to my husband’s job which was in the Arctic.  He flew back and forth every two weeks from Juneau to Kuparuk, AK, and the cost of the flight to Anchorage was a big one.  We took the chance when our lease needed renewal.  Instead of signing on for one more year we chose to relocate.  We only had one child at home at the time and were happy to stop paying several hundred every month for airfare.  We wanted to purchase a home and the cost of living in Juneau was exorbitant.  So we found a place to rent in the Mat-Su Valley, giving us a year to figure out where in the Valley we truly wanted to live.

During the packing up of our home I threw my back/neck out.  I called my doctor to see if he could see me, but his nurse told me he was away in Italy.  Now anyone who has had to sit at the native clinic knows that if you go in you could be in and out, or you could be sitting in the lobby for hours, especially if you didn’t have a scheduled appointment.  So with the short time period we had I opted to go to the Urgent Care.  The physician there gave me a prescription for one week’s worth of pain medication and muscle relaxers.  I was completely okay with that as I knew that was more than enough time and I could see the native clinic up in Wasilla once we got settled.  Which I promptly did after we arrived and got into our new home.

The native clinic here told me that I wouldn’t be getting my regular medications (Tramadol for pain) any more. I had been deemed by the Opiate Review Board to be a drug seeker.  My going to the Urgent Care prompted a review of me and in it they listed my scheduled follow up appointments with the surgical team as drug-seeking appointments.  Mind you I never asked for pain medication, the PA prescribed them to me based on his assessment after physical examination and told me if I didn’t get the back loosened up it couldn’t heal.  They also said that I had failed UA tests in the past.  I had never been approached about failed UAs.  I know that if they had I could have said what the issue was.  I had battled migraines for several months and had been given prescriptions for pain medication for them.  I almost never used the entire amount prescribed, but saved them for a future migraine. Had I been asked I could have said “Yes I had a few left from my last migraine and took them on a later date.”  I was never told not to do that, and honestly sitting for hours in the native clinic was not the top of my list of things to do in a busy household.  So if I could treat myself and I was using the medication as it was intended, to treat a migraine, not get high, I would have been able to actually explain what happened.  However NOT ONCE did anyone ask me about any of that.

I can say with certainty that this was one of the best forced decisions of my life, to leave the native healthcare system.  They had not looked any further into my neck/back pain.  I was told that Tramadol was a safe medication at the time and honestly it was so horrific to stop I pray that no one I ever care about takes it.  They are uncertain about the mechanism of action in Tramadol; it affects serotonin reuptake and I will never take it again in my life.

I reached out to new physicians and a pain management doctor.  I went in openly and explained how much pain I was in, not only in my joints but in my neck and back.  The doctor was very thorough, explained a lot to me that I had never had explained before, and took my pain seriously.  I had never been one to respond to medications the way most people do and I requested that I get the genetic testing to determine which medications I don’t process.  Lo and behold I was an intermediate metabolizer for two separate CYP categories.  This explained why some pain medications didn’t work or work well for me, why Meloxicam (a very strong NSAID) did nothing.  But more importantly she determined that I did indeed need surgery again on my neck.  So she set out to refer me to a physician.  The first surgeon took one look at my referral and history (now including drug seeker from the native clinic) and didn’t even bother to schedule an appointment to talk to me.

Several months later she found a surgeon to look at my case.  He had MRIs and X-rays taken and met with us.  My C4-C5 had been ruptured, and by the looks of it, had been for a long time.  I had been going to physical therapy and every time my PT would work on me he would need to use a metal bar to help “beat” my muscles into submission to get them to relax.  However quite often I had such severe pain in my neck that I would feel as though I would throw up when they pressed on it.  I lived on Zofran, an anti-nausea medication and I followed everything they told me to do.  The new surgeon, after looking at my completely collapsed disk, which was pressing on my spinal cord, scheduled me in his very next available surgery slot.

When he did the surgery he discovered that a piece of the disk and broken off and was lodged between a nerve and a muscle.  This explained the severe pain any time pressure was placed on that area and why I wanted to throw up. In fact my surgeon told me right then that I “had a very real reason for my pain, it had been that way for a while. This was validation of my complaints, legitimacy to my pain and as bittersweet as it was I still had an incorrect label attached to me

 

The recovery was a long one with my autoimmune issues also rearing themselves.  We discovered that I healed better with steroids involved.  I was finally starting to feel relief and didn’t have the daily migraines.  The native clinic had dismissed me for almost 8 months. I battled another 8 months of daily migraines while trying to establish that I wasn’t full of crap, that I did have legitimate pain and thankfully the surgery taking the disk off my spinal cord gave me the LONG awaited relief I needed.

I continued to have back pain and sharp stabbing pain in my pubic bone.  One of the ways my autoimmune affects me is gastrointestinal issues. I had battled daily chronic diarrhea and I was referred to a surgeon to do a colonoscopy.  The surgeon did an MRI of my abdomen before and the radiologist saw a mass in my mediastinal area.  They rescanned me to get a view of my chest and in it they saw that my thoracic had fused. I had what appeared to be shark fin shaped bone spurs growing everywhere into my lung area.  This led my spinal surgeon to ask my other doctors if I possibly had Ankylosing Spondylitis.  I mean, the spine usually doesn’t fuse, it doesn’t usually create shark fins growing into the spine, and the deterioration and pain in my SI joint and hips all along could be related.

Ultimately I ended up with an Ankylosing Spondylitis diagnosis. This painful chronic disease has no cure.  The standard treatment are NSAIDS and Disease Modifying Drugs or biolgoics, some of which I happen to not metabolize very well (as in I metabolize them far differently than most), and suddenly all things started to become clear.  My back pain started in my twenties and the symptoms I had suffered finally made sense.  Despite years of back problems, strange symptoms the native clinic completely brushed it off.  All the strange autoimmune reactions that I had, pain and swelling, the severe GI tract issues, the water retention – it all fell into place.  I can only imagine what my life would have been like had I been diagnosed and treated early but I really can’t even allow myself that luxury.  The anger would be too great.  I hated the native system for pushing me off as a crackpot, for deeming me an opiate seeker without **even looking** at my spine which was actually pressing on my spinal cord.

I fought a battle that no one took seriously; many providers assumed I was full of shit and didn’t take the pain I was in seriously. I cannot condone their dismissal, nor can I accept that their assumptions which were based on a preponderance of evidence skewed to support the idea that I was indeed a drug seeker.  I have no problem admitting where I’ve had issues and fully accept responsibility for things based on fact and truth. But I have never been addicted to a substance other than nicotine or caffeine. I abused alcohol when I was younger but I stopped that long before I was 25.  If I at any time truly felt I was an addict I would seek treatment. Anyone who truly knows me knows I can’t even drive the wrong way in a parking lot. I’d be such a wreck if I was just out to get high id check myself into treatment.   The worst part for me was that I never even got the chance to be formally evaluated and contest their claims. The funniest part about all this is that given my work experience, had I actually wanted to I could have found drugs outside the medical system, but I never just wanted drugs.  Sure I wanted, and on a humane level deserved relief, but more than anything I wanted answers and appropriate treatment.  But that was not to be had in the native system; I was just another low-life drug-seeking person in their eyes with NO real problem except being overweight, begging for pain meds (not heard begging for answers), and I was pushed in and out without serious thought to the issues.

I worked diligently to show my providers I wasn’t just a drug-seeking addict over the years.  During this we have learned that I can only take certain medications based on my metabolism.  My allergies to things only continue to grow and added to the laundry list of medications that can cause severe allergic reactions you can now add to it adhesives.  The wrong bandage can cause me to feel as though I cannot breathe.  My ribs don’t fully expand either due to the fusion of my thoracic so extra care is taken when I am in surgeries.

The constant pain of my joints and neck are still there.  I had a few years reprieve after the second neck surgery, but back again is the constant and nagging, wearing pain in my neck.  There is some deterioration of my C4-C3 and it bulges slightly. I am afraid that I will end up with my entire neck fused, and actually hope that some of that can relieve some of the pain I live with daily.  I take buprenorphine daily for pain, and it allows me to clean house, make meals, walk the dogs, plant a few flowers.  But this level of pain is something that I live with all the time.  I don’t think I even really know what a life without pain is.  I cannot imagine it. I live with pain so great I think it might drive others mad if they experienced it suddenly without the long build up of pain tolerance that I have had the misfortune of experiencing.

I find myself hating the drug abusers who get high.  I find myself hating that I spent so many years helping people who make it harder for me at this time to get legitimate pain relief.  I hate the very idea of being catalogued into that group.  But guess what?  There is no cataloging of people who live with a very painful chronic illness.  To the world at large we are nothing but drug seekers.  Cancer pain, is the only real pain that people who sufferers it deserve treatment.  Having battled both cancer and chronic pain I can tell you that – pain is pain.  It didn’t matter what kind of pain it was—it still hurt.  But apparently one is legitimate and the other well—is just something people should suck up and deal with.  I have battled and fought cancer myself.  I spent months being dismissed with extreme fatigue, change in my bowels, change in my mood, body temperature, blood pressure and I had cancer all along.   But the labels from the past just follow you and don’t lend themselves to being taken seriously—until someone else discovers a tumor growing.

These painful illnesses affect everyone in our lives, our spouses, our children, family and friends.  We do not have a world of folk advocating for us.  We have ourselves, armed with the knowledge of our diseases and essentially are overlooked in the massive push for legislation and market reforms.  Insurance companies dictate who, what are how we are treated based on formulas and denials abound.  We fight these things on a daily basis and there is no outcry to help us.  We are treated the very same way opiate addicts on the street are by many.  This makes little to no sense to me.  I used to be appalled at the idea of “death panels” but they do exist, death by a thousand cuts—this med is no longer approved, one is approved but denied later and guess what? Interruption of that medication can sometimes result in the loss of efficacy.  So that denial was effective in stopping an expensive treatment that was working leaving me with a search for another.  We do have to fight for every ounce of care.  There is not one person I know who has been affected by a painful chronic illness that wouldn’t trade it all in for health, the ability to work every day and no pain.  But we do not have the choice or the luxury.

There are many people with debilitating chronic illnesses that get lumped into the same categories as people who use pain medication for recreation, to soothe their psychological pain and simply because they love the high.  I have never “loved” the high-I resented having a need for the medication to function and there was no pleasure in it, only relief of pain.  The only thing I have ever wanted was a bit of relief from the incessant pain in my body.  There is no greater loss than the loss of self-worth and you can imagine that battle is one that someone who is ill must fight all the time.  What I wouldn’t give to go back 15 years, and even with back pain, I’d love to remember what it is like to go all day and night without stopping, without constant pain.  My former life has been stripped away from me and it is something I had to grieve and mourn and come to terms with where I am now.  I don’t want to be here but I have no choice, and the only choice I have is to make do with every day and do the best I can.

This fight is a real one and I am so very tired.  Who will take up the cause?  Who cares enough to fight for people who have to fight to get out of bed every day, when we have to chose between vacuuming or cooking dinner as the extent of our abilities for the day?  When showering is too much physical pain to consider, but we do it anyway because of course we have to.  We are seen as lazy drains on society.  Our loved ones look at us differently.  We lose so much of who we are, the dreams we planned, and it takes it’s toll.  We lose more things than just our physical abilities.  We lose the things everyone takes for granted.  I wouldn’t wish this on my worst enemy.  But I haven’t given up and I will keep up the fight as long as I am able.  Human strength comes in many forms and I hope I never lose mine.