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My Story Matters
June 12, 2015
In February of 2013, I began a new career as an interventionist and street outreach employee. I had previously been an emergency dispatcher for 8 years and a part-time police officer for 2 years. This new opportunity was quite a pay cut for me but my dream position. I would be outside all day, responding to calls dispatched by the largest police department in the state, and helping people experiencing mental health crisis's. I felt like I was born to do this work. About a month into my new position, I began to experience pain up the side of my legs and in my calf muscles. At first I thought it was just getting back in shape. With the career change, I would walk up to 14 miles a day. I just ignored the pain in the beginning. I have a high pain tolerance due to having several other painful conditions. The main one being interstitial cystitis. Basically my bladder doesn't have a lining. The pain continued and became way worse. My symptoms expanded as well. For example, I was experiencing numbness in my feet and my calfs literally felt like they were going to explode. I finally couldn't take it anymore so made an appointment with my orthopedic surgeon who had previously performed both a knee and ankle surgery on me. Unfortunately it was a 2 month wait to see him so I saw a PA at his office. At my first appointment, I explained the pain and numbness and that I have had plantar fasciaitis for 12 years but this pain was different. The Dr was very short with me and said I needed the layering method and needed to attack the fasciatis from all angles. I explained I've done that for years and this was different. She blew me off sending me to PT and home with gel heel cups. At one point she stated that my calf muscles were really tight and I may need to see a massage therapist to work on them. When I asked if insurance covered that she stated: "honey sometimes in life you need to pay for things!". Easy for someone making a PA's salary to say. Needless to say, I felt defeated. Little did I know, this was the beginning of a very long and windy road. I started going to Pt immediately. Within a couple visits, the therapist told me that he thought I had something called compartment syndrome. He told me it was rare and the drs may not believe me at first but he was positive I had it. I was finally able to get into my orginal surgeon within a month. He stated the condition was rare and he highly doubted I had it. He sent me instead for an EMG (nerve testing). The EMG came back negative and of course it was several more weeks to wait to go over those results with my surgeon. When he came into my room, he said I think you have a very rare condition called compartment syndrome (have to love how noone listens to patients it seems) and I needed to see a Dr who preformed pressure tests to confirm it. Of course it was several more weeks before I met with that dr. If you aren't familiar with the compartment pressure tests, be glad. They basically take this huge needle with a gauge on the end of it and insert it in each of your four compartments on each leg after numbing you. This gives your resting pressures. They then had me get on the treadmill and tell them when the pain was worst. It only took two minutes for the pain to show its ugly head. They asked if I was sure…trust me I was sure. Another note to add is that while you are on the treadmill, blood is running down your legs. I dont recommend wearing a new pair of socks when having this test. They then retake the pressures. Normal pressures are around 5. My resting ones were in the 30's and after 2 minutes, in the 90's. The Dr told me I shouldn't be able to walk 10 feet let alone miles everyday. I was then referred to the orthopedic surgeon who told me all the details of having my fascia released. He told myself and my Mom once the compartments are released then there will never be any problems again. He also said I'd be out of work a max of 3 months. At the time 3 months seemed like forever. I'd never taken more then 10 days off since being an adult. My boss was amazing about everything. He even wrote me an email saying how valued I was as an employee and that it seemed as if I had done the job all my life. Fast foward to August and it was finally my surgery date. My date had been pushed up two times due to my pain level. The surgery took a couple hours but the dr told my Mom and I that everything went smoothly. It was shockingly an outpatient surgery so we headed home to my parents in NY which is 2.5 hrs away. I honestly don't remember a ton about the ride home. When I arrived home, we were able to get me in the house. My Mom had my Dad stay at our other house (my parents live in a house on the property that she manages so we still have our house I grew up in) with our 2 dogs. Luckily I was still pretty doped up at that time and slept pretty well through the night. The next following days were regular post op days. My Mom was a gift from God (she always is anyways) when it came to caring for me. Lots and lots of icing and always elevated. I was unable to get out of the chair by myself so she would have to help me and then I'd shuffle along with a walker. The first week or so, my right foot was at a 90 degree angle outward and I was unable to straighten it. The pain was well pain. I was taking oxy for the pain so that helped. The high pain tolerance helped even more. I later found out that this is considered a very painful surgery for most people. About 4 days after my surgery, I noticed I had a UTI. I am prone to them because of my bladder condition so have a standing rx for them. My Mom drove the 30 minutes to the pharmancy for me (like I said, she is a saint). I was able to take the rx around 1pm that day. Around 5pm, I began not feeling great. I had a bout of diarrhea and then a terrible tightness in my chest. I went to lay down and it got progressively worse. I began shaking so bad that I could barely speak. I was freezing cold and felt like my chest was going to explode. I remember thinking this is what it feels like to die. My pulse was 104 and my blood pressure was around 200/100 and something. Long story short, the ambulance brought me the hour ride to the hospital with my parents. We later found out that I had developed an allergy to the rx I had always used for my UTIs. Add that to my list of issues. The next couple weeks were filled with me developing a reaction to the disolvable sutures so my body "spit" the stitches. It was quite painful and very nasty looking. I ended up staying with my parents a week longer then anticipated. The next month or so was filled with lots of pt. It seemed like the pain was gone but it was hard to tell from the post op pain. The spitting of the sutures delayed pt at one point as well. Before I knew it, the 3 months had come and gone. I went from short-term disability to long-term. I went from making over $45 grand the year before to around $17 grand a year. It makes you realize just how fast you can lose everything. If it were not for my parents, I would have for sure been homeless. I also have a horse (Ernie) which is my child…my life. I still am able to have him thanks to my parents and amazing friends (who I also consider family) who took Ernie in at their farm. Overall the severe pain seemed better as did the numbness. Unfortunately, my left foot went into a major flare. My ortho sent me to their podiatrist. This of course took forever to get in and lots of pointless appointments. They put me in a walking boot for several wks. This was followed by 2 removable hard casts and being completely non-weight bearing for around 4 months. When it hit about 8 months of being out of work, it finally set in that I was not returning to work. It was very difficult and sad for me to accept. My boss was again amazing. They had held my job for me the longest they had ever for an employee that had only been there for 6 months. By August, I underwent a partial fascia release of my plantar fascia of my left foot. Several more months of a boot, forearms crutches, and a knee walker followed. Still, zero relief. I began going to a new PT who was highly recommended by Mary and Jerry who own the barn where Ernie is. We made a small amount of progress and I went back to my original ortho from before my surgery. He put me in a walking cast for 8 wks and gave me hope again. That was short-lived when after the cast was removed he told me he had nothing else for me. I saw another specialist who was brilliant. He said the surgery should not have been performed on my foot with my track record. He also said that they had injected my heel so many times that there was no fatty pad left there. He agreed I needed to see a vascular specialist and continue with pt. December of 2014 I headed back to pt. The ladies there were amazing. They agreed that many blew me off because of my weight which angered them. I had gained 75lbs since the leg surgery. Ive always battled with my weight but working out has helped me keep it down. I hadn't been able to be physically active in well over a year. They even took pictures of my legs and sent them to some of the best vascular pt specialists in the nation. They agreed my legs were not from being overweight. There was some sort of mechanical flaw in my body but not sure what. I finally was sent for an ultrasound, doppler testing, and etc at the vascular department to check for intermittent claudication (where your blood flow gets cut off). I won't even get into how terrible the tech was. He said there was nothing wrong and the dr probably wouldn't even be willing to see me. After filing a complaint and my pt reaching out to the vascular surgeon, she agreed to meet with me. My appointment with her gave me hope again. She told me she would figure it out no matter what. She scheduled an MRI/MRA with plantar flexion and said after that we would do an catheter angiogram to check for PAES. Popliteal-artery-entrapment-syndrome-paes is where your nerve becomes entrapped in the back of your leg. It is very rare. I had to search myself to even come up with that possible diagnosis. About a week later, I had the testing done. I was in excruciating pain during the 3 hrs of testing. I was told , I'd hear back in less then 4 days. 5 days later, I called and a nurse told me the results were negative. She then called back the next day and said she was wrong and they were still reviewing the results. Another week went by and I finally heard back from the dr. She stated you do not have a vascular issue. Go back to your primary care. I asked about angiogram and she said there is nothing vascular wrong with me. Talk about blowing me off and ripping my hopes apart. I then deceided to call another hospital. In the begining of May 2015, I met with the new vascular surgeon. Upon exam, he stated that he believed I still had chronic compartment syndrome. I was astonished at this. He said 11% of people can still have it after surgery and need to have the fascia completely removed. Due to my extremely high pressures the first time, he believed this was definitely a possibility. If this is the case, the surgery is much worse the second time around and then there is a 30% chance it doesn't work. He also said there could be more then one problem. I can not explain the relief that this surgeon believed me. 2 years of an indescripable pain that has taken over my life. I have an appointment this Monday, June 15th to have my pressures taken again. I'm praying for answers. I also have an appointment on the 30th to have my upper back injected (I also have thoracic disc degenerative disease and thoracic spondylosis without myelopathy) by my pain management dr. He is also going to check to see if I have CRPS as well. Complex regional pain syndrome (CRPS) is a chronic pain condition most often affecting one of the limbs (arms, legs, hands, or feet), usually after an injury or trauma to that limb. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. The central nervous system is composed of the brain and spinal cord, and the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body. CRPS is characterized by prolonged or excessive pain and mild or dramatic changes in skin color, temperature, and/or swelling in the affected area. It is an extremely painful condition which is considered number 1 of the top 10 most painful conditions. I have nerve damage from the leg surgery and my right leg will literally feel like someone is stabbing it with a hot poker. I'm afraid to say I'm hopeful again because I've lost hope so many times. I keep my life and pain well hidden from most who aren't around me from day to day. I'm still battling for my SSDI but am making progress. On a daily basis, I can't fall asleep until around 3am. My sleep is not good sleep. My leg pain is often so bad that I'll have disturbing dreams where something has happened to my legs such as they catch on fire and etc. I go see Ernie around noon and can not stand or walk longer then 10 minutes without having to sit. Sitting is also painful so there is little relief. Around 4pm everyday, the pain is so bad that I have to take a 3-4 hr nap with my legs elevated. I then head back to the barn to see Ernie again. He's my mental therapy. He's so used to my disability that when my leg gave out last week, he actually moved not to step on me and braced to catch me with his shoulder. At 32 years old, it has been very difficult to adjust. I look normal on the outside and don't have a diagnosis such as cancer that catches people's attention. The stress of no income is unbelievable on top of the physical pain. I dread going to bed everynight because my stairs are so painful to climb. You begin to feel like people forget you and have no clue what you are going through because you "look normal". I feel people looking at me when I pull into the handicapped space. They don't need to say anything. Their expressions say it all. My life is forever changed. I often feel that it's such a waste of a life. I'm so incredibly blessed with my family and loved ones who remind me daily that just because I'm disabled doesn't make me worth any less. I can not put into words the love I have for them and how I will be forever grateful. My parents have taken care of me after every surgery. I feel like my Mom and best friends get the most of the burden when I tell them my pain level from day to day because there are so many I don't share it with. I'm writing this to make others aware of my story. I want to remind everyone to always be kind to eachother. You have no clue what struggles others are facing. Your kind hello that takes 1 second to say could be what makes someone like myself feel like you care. I will never give up even though there are many days I need to remind myself not to.
This blog was originally posted at www.maryleejames.com on June 19, 2014.
THIS IS WHY IT MATTERS – TO ME
The car was cold, and very quiet. Too quiet. It was not going to start, this time. There we sat, the car and me, alone in the middle of an empty parking lot at the community college. It was a little past midnight, and raining hard enough to make me think a boat might be a better choice than the car, but there were none of those around, either. This was a few decades ago, before cell phones. I wouldn’t have called anyone that late, anyway. I had choices to make. The most immediate choice was whether to get out in the rain and walk, or go to sleep in the car. It was eight miles home, through the most dangerous part of the city. On the other hand, the solitude of that parking lot just outside the central city was not appealing, either.
I was a nurse at the jail at that time, recently divorced, and taking courses one at a time in search of my dream to obtain a liberal arts education. I had saved up just enough money to register for the next term; that’s why I was so late leaving the college after the last evening class of the semester. My advisor and I had been discussing my academic future, and he was encouraging me to pursue my dream. When we left, he went to the faculty parking lot and never realized the personal drama I had going on in the student lot. In that drama, I was remembering that the money I had saved for tuition was just the amount it was going to cost to fix my car.
The heady dream of continuing my education crashed into the reality of the present loss. I got out of the car, reached for my umbrella but then left it behind. The inmates at the jail had told me never to walk alone at night under an umbrella because it makes you look vulnerable. “Walk with your head high,” they advised, “with your fists in your pockets. It suggests you may be carrying a weapon in your hands.” So I took their advice, and began the longest walk of my life.
In my misery, I reviewed my belief that nothing would ever go right in my life. Then, I began the internal discussion that would lead to yet another choice. As the nurse at the jail, I knew many people in the city on both sides of the law. There were some who, aware of my deep longing to go to the University, were increasingly insisting that I take an offer from them seriously. That offer was to essentially set me up as a drug dealer, so that I could make a living and pay tuition at the university. These were people who had both the means and the authority to do this, while at the same time protecting me from the legal consequences. So, as I walked through the city, tears mixing with rain streaming down my face, an internal argument was building.
One of the reasons they were willing to back me in the drug business was that they knew of my inability to tolerate drugs. I would not become a user, succumbing to my own trade. That long ago, ten years into having been diagnosed with degenerative disc disease, I thought I knew everything there was to know about acute and chronic pain in a life without pain relievers. Walking in the rain, steaming with self-pity, I was losing the perspective that heretofore had kept me on the right side of the law. Why not take them up on it? At least they cared enough to help me, the discussion began.
Four miles into the walk, the dark side was winning the battle. I was not going to live this way anymore. I was going to have a better life for myself, no matter what it took.
I remember clearly that exact moment, on the cusp of making that decision. I was looking at a lighted billboard, high on a rooftop (keeping my head up, I couldn’t miss it). What I don’t remember was a single thing that was on that billboard, or why it had my attention. I only remember the part of me that was screaming inside my head: “NO! NEVER, for any reason whatsoever, can I participate in something that destroys young lives before they ever get to make good choices. NEVER, can I contribute to something so deadly to society. NOTHING IN LIFE IS WORTH DOING THIS. NO, NO AND NO!
The rage against the idea that swept over me was so strong, I completed the next half of my journey home on the adrenaline that it produced. The next week, on my advisor’s advice, I visited the financial aid director of the university and he provided the funding that began my journey toward my PhD, completely paid for by grants and scholarships. But that is a different, though quite wonderful, story.
The decades since that time were almost a fairy tale, yet one accompanied by ever-increasing deterioration in my back, more disease processes as I aged, and no more tolerance for medications than I ever had. Last year, at the lowest point of my life since the aforementioned walk in the rain, I was so physically, emotionally and mentally drained that I had to retire. I could no longer care for my home, my yard, or hold a job. Pain had robbed me of the ability to think clearly, even to remember what I was doing from one minute to the next. Unable to sleep or even find a comfortable place to be, I would cry with the pain and query the God who had rescued me from destruction years before: “Why? Why don’t you just let me die?”
That was apparently not in the cards for now. Though doctors had agreed through the years that I was not a good candidate for surgery on my back, one doctor believed that epidurals might give me some relief. The pain management physician who performs them here agreed to do it, and after two procedures I am now able to care for myself, to drive without fear that my leg reflexes would fail me, and to think in whole sentences and even paragraphs. There is still pain, but not too much for me to cope. And the condition is still degenerative, so I don’t know for how long, but I can cherish every day that I have.
Which brings me to the reason for this story. I have been writing and talking a lot about my concerns about physicians and patients (and also pharmacists, I’m learning) in the current hysteria over opioid drugs. I firmly believe that many legislators and law enforcers have made uninformed decisions that are causing untold harm to many people (not, thank God, in Indiana where we have a reasonable law).
I have been asked why it matters to me, since I can’t take pain relievers anyway. Why am I so concerned about all this? It matters to me because I KNOW WHAT IT MEANS TO SUFFER DAY IN AND DAY OUT WITH PAIN, AND NO RELIEF! Why, in any world where people claim to care for one another, would I willingly support laws made and enforced carelessly that cause people who suffer to be cut off from the physicians and pharmacists who could help them? And how long are people going to want to even become physicians and pharmacists when they could go to jail – even be charged with murder – for trying to help people who suffer?
That is why it matters to me.
A Caregiver's Perspective:
A Letter from Gil's parents
A Clinician's Perspective:
Here are some pictures my patients have drawn of their pain. I thought it might help some others, who don't understand chronic pain.
I don't understand why so many Doctors have never heard of CRPS. This disease has been recognized since the Civil War. I don't understand why the FDA has not recognized a treatment for the disease. Why is ketimine not recognized as an approved treatment? Insurance will not pay for this treatment or any other that have shown good results for years. We have a medical school where I live, how and who do I need to talk to speak with students and residents about CRPS. Why don't ER doctors know that 500 mg taken twice a day can lessen the chance of developing CRPS? How can we get more awareness to doctors?
Sorry to hear of your struggle with CRPS.
Ketamine was approved long ago as an anesthetic. There is no financial incentive for the manufactures to conduct the studies that would be required to give ketamine an indication for CRPS. This is unfortunate but studies have to be conducted and submitted to the FDA to add indications for a drug.
You are correct that many doctors are not familiar with CRPS. Even those who are familiar may have a different understanding of how it should be treated.
Lynn Webster, M.D.
I cut the ulnar nerve in my right hand. The doctor did surgery to repair, but the nerve pain never went away. 6 months later it was in both legs and now 6 years later I have pain everywhere. Looking forward to hearing other stories and finding out new ways to cope.