Tag Archives: cane

My Mystery Diagnosis, Faith and Forgiveness

There was no lightening or thunderbolt or exact period of time or date but it came on very gradually—so gradually that I actually did not even notice the change in my body.

I was still an avid runner living in Augusta in 2011. Hindsight is a wonderful thing and we all have 20/20, but at the time, I couldn’t even fathom that something devastating was brewing. Looking back, I remember running my regular 6-10 mile route when I began to “trip.” At first I attributed this to just being clumsy, which I never was before. It is amazing how the human mind can deny and deny something that is so obviously wrong. Running, previously my most enjoyable past time, began to be fraught with anxiety about whether or not I would trip and fall. Each time I ventured out, I would lecture myself on “lifting my right foot up.” When I did trip, I would chide myself by saying, “What’s wrong with you—PICK UP YOUR FOOT, IDIOT?” But invariably no matter how much I tried, my right foot would not lift far enough off the ground, resulting in tripping. One day, after a very frustrating and anxiety-ridden run, I checked the tread of my sneakers and I saw that the toe of the right sneaker was almost completely worn down, while the left sneaker was fine. Yet I still thought I was merely clumsy. A few days before Thanksgiving, I went to Kroger to buy food for a dish and took a huge fall in the parking lot, spilling my grocery bag. I quickly got up and tried to figure out what had happened. Apparently while getting to my car, my right foot did not clear the curb—more like dragged—and down I went. Fortunately or unfortunately I seemed to be walking normally so this pattern continued until August 2012.

As an obsessive runner I had multiple knee surgeries over the years for a ripped meniscus. In August 2012, I underwent one more surgery on my damaged right knee. I had every confidence that I would recover as I had before, although I was told I should not run anymore. I accepted that and I was just grateful that finally I would be pain free. However, my knee never got better and continued to be so painful where I could walk only with a marked limp. I tried all kinds of shots in my knee but it would not heal properly.

In addition, for a while I had bad lumber pain, especially in the morning. I thought I just needed a new mattress and, no matter how many mattresses I tried (I drove the mattress store employees crazy) my low back pain persisted. But it was not only lumbar pain—my whole body hurt and my toes were numb. I went to my internist, and after doing a cursory exam he concluded that I didn’t have any disc involvement and put me on an anti-inflammatory medication. I asked him if I should at least get an MRI, and he rejected that idea due to the cost. I emphasized to him that MY WHOLE BODY ACHED, but nothing was ordered. I finally decided that I would “self-refer” to a neurosurgeon. I went to the Neuroscience facility on Steven’s Creek Road and saw Dr. B, an osteopath, the first person before referral to a surgeon. He ordered a lumber MRI and it revealed spinal stenosis, pretty common in someone my age. We decided on a course of epidural steroid injections, which proved to be mildly successful for about a week. Then after two courses of this treatment, the pain returned and he finally referred me to one of the neurosurgeons (Dr. S) in that practice. My surgery was scheduled for Election Day 2012 and I had high hopes of becoming pain free again. At that time I was a massage therapist, and it was very difficult to practice my occupation and bend over, trying to relieve others’ pain, when my back was killing me. I went home from the hospital the next day with a plan to do lots of walking and get myself back on track for a quick recovery. However that was not the way it played out. Within a week, I was having balance trouble and within two weeks I was reluctantly using a cane to get around. My right knee was just as painful as ever and I could not walk without a limp and cane. I began to have nerve pain that I almost could not identify because I had never experienced that before. I frantically searched the Internet for some type of explanation and came up with “failed back surgery” as the culprit because I read story after story of patients who never recovered from lumbar surgery.

Now my 4 month long nightmare began in earnest. I went back to the Neuroscience practice and spoke with the surgeon’s very unsympathetic physician’s assistant who said, “give it time” and that the “nerve root needed to heal.” So, I tried to do just that, but instead of seeing improvement, my symptoms became worse and worse. At this point, I had severe burning and tingling nerve pain from my waist to my toes. I had a mysterious pressure on my abdomen and back whenever I stood which was relieved only when I sat or lay down. My right leg was cold to the touch, beginning to atrophy, and I could not lift it properly, much less walk without a cane. What made this so nightmarish was that NOBODY BELIEVED ME. Each time I went in for a check up, I was told over and over, “Well, this is so unusual. We’ve never seen this before”, as if it must be psychosomatic in nature—that was the implication. In the meantime, I was so debilitated at this point that I had to keep crutches and a cane by my bed so I could get into the bathroom at night. I actually drove, but with my heart in my mouth because my right leg, which was partially paralyzed, didn’t function properly. I had so many close calls that I knew God had to be traveling with me each time I ventured out. I had to lift my leg up with my hands to get it in the car and my biggest fear was that I would kill a person or family while driving. When I went shopping I would try to park as close as I could to the store, sometimes abandoning my mission because it was too far to walk. Everything that we take for granted was an effort and it gave me a great appreciation for what disabled people deal with on a regular basis. I asked the physician’s assistant if she could take pity on me and write a note for me to get a disabled car tag, but she refused stating, “Those are only given to people who are totally paralyzed” which is untrue. I ended up getting one from my orthopedist instead.

I went in for another LUMBER MRI because they wanted to see if the surgical site gave them any clues, which it didn’t. I was suffering, both physically and psychologically and I began to lose hope. But I soldered on and each day I would wake up with HOPE that maybe the nerve root was finally healing and maybe, just maybe, I could at least walk a little better. Some days I would fool myself into believing that there was a tiny bit of improvement and my mood would be bolstered. But that positive mood was dashed the next day when, upon waking, it became apparent that I was not any better, and in fact, probably worse. We all know that HOPE is everything, and I had none. So, at this point, I began to consider suicide every morning, even planning the method. I believe that what kept me going was that I employed a 12 step program tool of thinking in terms of “one day at a time.” I would think, “OK, whatever you want to do, you can put this off until tomorrow” and that kept me going in the world for another day. On days that I was so depressed, I would force myself to go to the gym, and although I didn’t go into the regular gym because I was embarrassed by my debilitated state, I went to the disabled pool. It was there that I would find some gratitude because, although here I was, withered polio-like leg, ambling into the pool with the use of my cane, I saw people far worse than me—quadriplegics with happy expressions in the pool. I saw wheelchair-bound people and said, “Thank You God.”

I continued going to the Neuroscience practice for checkups, only to be shuffled back and forth to various departments. All the while, they were baffled by my deteriorated state. One day they decided to perform an EMG and I was so hopeful that finally they would find the reason for my crippling condition. It was New Years Eve of 2012 when, while sitting in my car, I received a call from the nurse stating that, “The EMG showed nothing but an old radiculopathy.” In English—nothing new and nothing that would account for my deterioration. That day was significant in that I just sat there, totally numb and disbelieving, my last hope dashed, and thought that I could not bring myself to go on in the world. A friend of mine happened to see me, and asked if I was OK and suggested we go to Starbucks, which saved me for another day.

The next person to see me at that practice was the pain management doctor who gave me the news in an abrupt manner, that he could not help me. He prescribed Lyrica and Neurontin for nerve pain, but all it did was cause me to fall because it made my muscles weak, so I stopped that immediately. I was so angry at his lack of empathy and bad bedside manner but it turned out to be the best thing that happened because he referred me back to the original doctor, going full circle. Dr. B, the osteopath, sat and actually thought about what might be going on and what my options were. He treated me as a person and his kind, thoughtful manner was appreciated. The new plan was to embark on yet another course of epidural steroid injections, but suddenly a thought occurred to him—what if we order a thoracic MRI? After the MRI I went back to his office with no expectations, but maybe a little hope. As soon as he pulled up the MRI on the screen, his eyes lit up because the MRI revealed a small benign tumor (meningioma) pressing on T3 of the spinal cord. Boom—my world exploded in a good way. He excitedly said, “Here’s your problem. This meningioma is pressing on T3, causing all your symptoms.” It was as if God came down from the heavens and blessed me—I was so ecstatic that words cannot describe it. I am brought to tears when I think of that moment. He quickly referred me back to the original surgeon, Dr. S, who was shocked and humbled. I actually did not want to use the same surgeon, but I realized she knew my case, and I could get this done very soon. Just prior to surgery I discovered an article from a Japanese case study that said, “If a patient is not recovering from lumber surgery, the surgeon should consider the possibility of a thoracic meningioma.” I sure wish I had seen that article months before, but at least it was finally correctly diagnosed. The spinal surgery, scheduled for a week later, was rough but successful. Right out of the recovery room, I clearly remember me lifting my right leg, unaided, and being elated. After a hard 5 days in the hospital, in severe pain, I was released. A home care nurse was ordered for 2 weeks and I dismissed her after a week. My walker went into the garage along with my cane and crutches. I am athletic and I began to recover so quickly due to my previous good shape and I began going to the gym again. I had to be careful that nobody slapped me on my back for a while, which would send me to the moon but other than that, it was fine. My damaged knee began to heal, and my atrophied and cold right leg began to warm and plump out, looking normal again. Here’s the thing, I was bitter at first for all the doctors who I felt failed me starting initially with my internist and I even considered hiring a lawyer to sue. But, I then began to think about gratitude and forgiveness and by the grace of God, a solution to my suffering was found. I began to think that maybe my travails helped me be more empathetic to the disabled, an experience I never would have had otherwise. On March 1st it will be 4 years since I got my life back. But, each time I perform an otherwise unremarkable feat such as walking briskly across the room, or climbing stairs unaided, I am in awe. Sometimes I am merely in Walmart and I marvel at how fast I can walk, or in an airport, briskly passing people on the way to my connection. It is amazing and miraculous and I will never stop being grateful.

Gratitude

Every so often, I find myself getting impatient with someone ambling across the street with a cane. It’s so easy to forget that less than a year and a half ago, that was me. Sometimes when I quickly get up from a seat, and stride very briskly to the other side of the room for something, I find it amazing. Unlike most people who are not impaired, I am acutely aware of how well I simply “walk” and never take it for granted. I know that just plain “walking” without losing balance, fear of falling, or having to hang onto the walls is a gift. Sometimes I become aware that my feet, belly, legs, and back are no longer numb and tingling. I look at my right leg, which was withered as if I had polio, and see a nice, plump muscular leg again. I know that not having my crutch parked beside my bed for help in the middle of the night, is something I never thought I would experience again. Just like anything, it is human nature to not appreciate what you have until you lose it. Things that I thought I would never do again, such as running (a run/walk now) I am doing. I was a prisoner to my disability, never being able to just pick up and go, and I will be forever grateful for that miracle bestowed upon me. OK, if I had not persevered and kept insisting that something was wrong with me, and not just accepted a life of an invalid, I would not have had that “miracle.” So, it all went together and my tenacity was in itself, divine intervention, I believe. When I remember to practice gratitude and appreciation for how I was literally given my life back from the brink, I have a better day. When I focus on the same old petty, annoying, neurotic insecurities (which I will probably never totally lose) I am lost. I know that I have been given a daily reprieve and there are no guarantees in life, but for now, my life is infinitely better than it was, and I cannot forget that.

Surgery Log 2013 – Spa Service

Tuesday, January 29, 2013

Last Monday I agreed to do a spa service and massage on Saturday. Saturday morning I woke up practically unable to walk at all. My right leg kept giving out on me and I was going to cancel the service, but as the morning wore on, I started to walk decently. I was very nervous about the service but it came off OK. I still feel like a freak when I “walk” because if I don’t use my cane, I have to limp extensively. But in the massage room, I could at least hold onto the credenza and wall, or lean a bit on the table. I took off my shoes and I walked much better with better balance. I think I did a good service and the client gave me a $25 tip; she also seemed to enjoy it. So, apparently, if I am not feeling too bad, I actually can do massages. I sent out some texts to clients who said they will call, etc. One client said she is so glad that I am back to work now—little does she know that I am really just as bad as I was a month ago because there is absolutely no improvement at all; I just learn to “live with it” for now and do the best I can. I went to a meeting and everyone has a pitying expression and say, “I’m so sorry” to me over and over. That makes me feel so terrible and I want to not go out in public any more. Each night I pray that I find a doctor to help me feel better and at least get a little improvement, but each morning I awake with the same exact symptoms and feel so let down. This morning my clock radio played “Evil Ways” by Santana and it brought back memories of me dancing to that when I was a teenager. I have to be careful to not keep reminiscing because it brings on depression, something I cannot afford. I am also dealing with lots of jealousy of people doing just mundane things and not thinking about it, such as running, walking normally, just living their life without having to constantly be monitoring their every move or their body. I think the people in the Midday Group are used to me being “crippled” and they don’t keep telling me how “sorry” they are and that makes me feel more accepted and less freakish. I am scared to death that this new doctor will give me the same old song and dance about how he cannot help me and I will simply fall to pieces at that point. God, please help me find the doctor to help me get better and get a life back.

Surgery Log – Christmas Eve

12/24/12 – Monday – Christmas Eve – I woke up with the usual stiff and sore body. I decided I would go to the gym and to a meeting. I also did not feel like doing my usual chores in the house today so I went to Starbucks and just sat down with a Pumpkin Spice Latte. I came home and redesigned some of the earrings that Lisa gave me for my “birthday.” Janet’s family usually celebrates Christmas on the 25th but this year things were very different. Due to all her children having plans on Christmas day, they all decided to come over on Christmas Eve. That was fine but it left Christmas day empty, but this was not my call so I had to accept it. In the meantime, my legs for some reason were especially wobbly and my balance was way off. This was very upsetting and I almost fell while everybody was there. That just made me sick. I totally do not understand why some days my legs don’t feel that bad and even feel strong, and other days, I am so weak. When I came home I watched the tail end of It’s A Wonderful Life.

12/25/12 – Tuesday – Christmas Day – My walking was not too bad but a little wobbly again. I even walked outside with my cane for about 20 minutes or so. Then I got ready and went to a meeting. I was ranting a little before the meeting due to my wobbly legs but for some reason, after the meeting I felt a lot better. I wanted to go to Starbucks with my laptop but when I found one open, it was so packed to the gills that I just left, without even getting anything; very disappointing. I came home and put my leg brace on which helps me walk better—sort of (in a peg leg kind of way). Then more cleaning, something I seem to be obsessed with since I got crippled. Janet thinks this is because I at least have some control of this part of my life, and that seems like a good explanation. I am starting to feel depressed and hopeless even as I write this at 7:00 pm, so I will try to go to bed early tonight. I still think about ending everything each day but if I put it off long enough, I usually find something I can hang on to; some hope to keep me going for yet another day.

Surgery Log – 2012 – Walking with cane

11/23/12 – Friday – I try something drastic this Friday morning; I go out walking again. I’ve been so scared to do this without a cane since my balance has been so off and my stupid right knee/leg, in its infinite wisdom, decides arbitrarily that it doesn’t want to hold my weight out of nowhere. But I seemed to be walking better last night and this morning. It is a Catch-22 situation; when I don’t walk or try exercising my quads, I don’t have the pain when I go from sitting to standing. Yet, if I don’t use my leg it gets weaker and weaker, with my quads atrophying as well as my calf. My leg then gets so weak that my knee stops healing and I never get better. I simply do not know what the answer is at this point. It is so frustrating because today I was proud and almost happy that I could somewhat walk halfway decently—-albeit on my right toe because of the uneven hips–but not too bad. Then I did some light squats holding on which do not put stress on the knees. Nevertheless, when I sat in my car and went to get out, BAM, same old shit. My knee locked up like glue and I had to wait until I could straighten it out (painfully) to walk at all. Some days I have hope, when I can walk without pain and then out of nowhere my hope is dashed when my stupid knee decides to not work again. So, should I do no exercise and not rehab my back, continue the further deterioration of my right leg through atrophy, or do the exercise and not be able to walk at all afterwards. I pray and pray for some kind of help and suddenly it seems to come in the form of simply being able to walk. I then feel like I have finally turned the corner and then there is the cruelest joke of all, my knee is back to being painful and stiff. Part of the problem is that my leg(s) are still stiff and numb. My knees are especially numb due to the spinal nerve still being inflamed. The continual numbness probably prevents my knee from healing properly. Since the biggest problem is my entire right leg, the knee never gets better. As always people have to comment on my limp and cane (when I use it) necessitating me to explain my problems. I am tired as hell of doing this. I am afraid to get up because I figure my leg will be so stiff I won’t be able to unbend it for a while. It is so sad and I am tired of all this. I go to Starbucks to have a pumpkin spice latte, YUM. That always makes me feel better temporarily. I go home and I feel really good—-the best I have felt in a while. All of a sudden my right leg seems to have strength and I can walk relatively well. Since I feel decent, I decide to do tons of cleaning. I then go over to Janet’s house for “Thanksgiving” and have a surprisingly good time.