I know this diagnosis has nothing to do with guts directly, but since my blog is about surviving chronic illness with a smile by God’s daily help, I figured I would share this new challenge which also explains why I haven’t written much lately.
On December 2, 2012 I was walking with my cane. I had gained a lot more mobility and some more strength in my legs since about May of 2012 and I was more active. It was great. I didn’t take it for granted. However, on Dec 2, something went really wrong. I felt what I thought was either nerve shocks or muscle spasms in my left leg from the outside of my calf and through my ankle. It was so bad I could barely think straight or talk, and I had not fallen, tripped, or even walked funky on my leg. I had no idea how it started.
I have low bone density in my legs and I’ve had over 20 stress fractures. Within a few days, the pain felt similar to stress fractures I’d had in the past so I stopped weight bearing and made an appointment with my doctor. Given the fact that I had not fractured badly for about 1.5 years, I had this feeling I really needed to get this one checked out. By the time I made it to the first podiatrist, the swelling was localized to the 3rd and 4th metatarsal area which was also the area of increased pain. The first podiatrist said he could not see a stress fracture but that, given my history, we should treat it as one. He ordered two air cast boots so that we could also protect the right leg from injury/fracture from having to take all my weight when weight bearing on crutches.
After a few days, however, I began getting a gut feeling that I wasn’t experiencing just a stress fracture. I decided I needed a second opinion, as the stress fracture was not seen on x-ray. The second podiatrist said basically the same thing – “I think it’s a stress fracture. Your bones look weak on the x-rays, and your fractures are pathogenic. You need to go to a teaching hospital to get this diagnosed properly. We’re missing a link.” So I went to several other doctors and on January 4th I saw an orthopaedic surgeon who came highly recommended by several friends. By the time I made it to his office, my pain and swelling had increased even though I had been non weight bearing (NWB) for a full month! The orthopaedic surgeon touched my leg and I felt like I was going to bless him with a fistful of fingers as I yelled “Stop! Don’t touch me!” He backed off and said, “Wow, you are REALLY hypersensitive. I was touching you really lightly.” ”You call that LIGHTLY?!” I asked, unbelieving. We talked about the test results – my CT was “clean” except for the bone demineralization showing in both legs. And my bone density scan (DEXA) was “normal” for my age. This didn’t add up.
I asked him if he thought I had a neuroma. ”I don’t think so,” he answered.
Finally, I hesitatingly asked the question I wasn’t sure I wanted an honest answer to. ”Do you think I have Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy?”
“How did you put that together?!” he asked, quite surprised. ”I noticed the discrepancy in bone mineralization on my CT and density tests. I know that localized bone loss is a sign of CRPS/RSD, and I can’t stand things touching my legs, especially my left leg. I’m NWB and not getting better, and if it was just a fracture I’d have some relief by now, but things are getting worse each week.” With eyebrows raised, sill surprised, he said, “Well, you’re a smart one! I do think it’s CRPS, and it looks to me like you have a severe case, probably triggered by your reconstructive surgeries 10 years ago. I need to send you to a top specialist.”
The news didn’t sink in until I got home; I didn’t let it. When I was an Occupational Therapy Assistant, I treated patients who had CRPS/RSD. I saw the agony they endured. I didn’t make their lives much easier, I’m sad to say, but I did my very best to let them know I wanted to support them in their quest for pain relief and improvement of function and that I earnestly cared for them.
Now I’m on the other end; the patient. Waiting to start home health nursing, OT and aquatic physical therapy. Knowing that a desensitization program and active ROM (range of motion) of my extremely tight and painful leg is going to be part of the plan to get me back on my feet. And I CRINGE.
So many thoughts, so many raw emotions, physical pain, coupled with near-sleepless nights and exhaustion have rolled together into this monster that I’m now fighting. I thought to myself, “I just recently got good control of my gut through YEARS of dedication to a gluten free diet, SCD, tons of doctors, biofeedback therapy for my pelvic floor dysfunction, and caring for my other chronic illnesses. I’m just starting to “get out” and see what I can do for the first time in many years. I’m getting to know myself again for ME, not for all my illnesses. And now…THIS?!” It’s been a crushing blow.
Some days I handle it well; other days I break down and cry from frustration and, like today, simply want to punch someone. Finally, after bottling it up all day, I screamed at the top of my lungs in my bedroom. It felt good to let it out. I just needed to scream for a few minutes and let it go. After I finished yelling like someone was being murdered, I yelled “It’s all okay – just needed to scream” to my neighbors who doubtless heard me through the walls. Probably shoulda used a pillow…..afterthought. :P
Then I played my flute and sang some hymns. LOL. Quite the opposite, eh? :) That felt good too. I desperately needed something to distract me from the main thing I’ve been thinking of for several days – how I’m going to manage my leg problems and get the medical services and equipment I need. I was too unsettled to read and get much out of it, so making music and just playing by ear and praising the Lord hit the sweet spot and I finally sighed with relief.
While one might think the physical pain would be the worst part, for me the emotional side of it is probably the hardest at this time. I feel like my life hinges upon avoidance of everything. I avoid gluten because of severe celiac disease and gluten ataxia. Gluten is EVERYWHERE outside of my home and I have to be extremely careful and take all my food with me. I have to be aware when people touch my wheelchair, my cooler, or anything of mine because they will often have gluten on their hands (food and church functions go together) and I can get glutened through the most minimal contact. I avoid illegal foods on SCD, and I avoid nuts and foods to which I have verified food allergies. I have also become sensitive to chemicals in the products that people use in their homes and on their bodies. When I hug folks (I’m the huggiest person alive!) or spend too much time in their homes, I break out in contact dermatitis. My head and neck and face itch the worst, but also any skin areas that come into contact with these chemicals. I’m tired of itching and I shave my head regularly now so I can apply medication directly to my scalp without all the hair gunk which helps somewhat; I’m too tired with everything else to mess with hair…it’s optional IMO. So I avoid people and human contact to keep from itching and rashing so badly. I avoid places and activities that aren’t accessible to wheelchairs due to mobility limitations. I avoid movies, driving at night, watching television, and plays or concerts where there’s darkness and bright lights because of my migraines. I avoid leaving my house in cold weather because it hurts my joints so badly and triggers my asthma. I avoid so many things, and to now be guarding my leg so carefully due to pain and not wanting anything to touch it….it’s just another avoidance to add to my list. I feel like someone should seal me up in a bubble! How do I keep living without developing some off-the-wall phobia or stress disorder when I’m constantly being bombarded by all the things that make me sick and which I’m trying to avoid? I guess only by the grace of God.
It’s not just keeping my leg from getting bumped or touched that I now have to avoid. If I have CRPS/RSD for realz, I have to be careful to avoid any activities in which I could sustain even minor injuries because those very minor injuries could cause the pain to spread to other areas of my body. This is frightening to me. Spreading? Shudder. About 77% of folks who get CRPS/RSD will have the pain spread to other parts of their bodies. I don’t want to be part of that statistic.
I feel like I’m made out of glass. Frequent fractures just from walking a little or standing (I don’t even dream of running anymore…my legs might just fall off…and then again, that may be a blessing!). I just break so easily and in so many ways. Eat the wrong food, and my GI and mental health fall apart within 24 hours. Hug the wrong person and itch for two weeks. How can I be so fragile? In my mind, however, I’m not fragile. I’m a fighter. I’m determined and unwilling to give anything less than my best to any cause or purpose in which I’m engaged. I’m an all-or-nothing type of person. ”FRAGILE” just doesn’t fit into my image of myself nor into my plans for the future.
Part of me is maybe a little relieved to have a more definite answer for the burning pain I’ve had in my legs for 10 years or more. When the orthopaedic surgeon asked why I use the wheelchair, I said, “my leg burn like they are on fire, they break so easily, they hurt, my back hurts, and I was using it more for ataxia and balance issues but I’ve made good progress there in the last 3 years”. I have the answer to that question memorized because it always catches me off guard when a doctor in particular asks why I use my wheelchair. I guess I think it’s so obvious, but that’s because I live in MY body…they don’t feel my pain.
There is no cure for RSD/CRPS. There’s only treatment, most of which is intense and invasive. Everything from narcotic drugs and no-joke therapy to spinal blocks and nerve blocks, spinal cord stimulators, pain pumps, and in worse case scenarios either cutting the sympathetic nerves to the affected limb or amputation. A few people recover spontaneously. I’ve had this burning for 10 years so that’s not likely except for a miracle. But I’m hoping perhaps the more acute issues with my left leg will improve. I don’t know how to keep from losing my mind if I think it won’t get at least somewhat better.
So that’s what I know today. I made my New Year’s Resolution which is: I am going to do everything I can, through the strength God provides me, to get back to walking as soon as possible. I will do all of my PT and OT exercises, continue to eat right, take supplements and meds, push thru the pain as is more beneficial than detrimental, and improve at ASKING FOR HELP when I need it (i.e. before I hurt myself).
God has pulled me through so many hard times and situations in my life. I know He will do it again. Doesn’t mean I look forward to the process, however. Like most everyone else, I prefer to take the path of least resistance/suffering. While this detour was not on my agenda, I know it was on His and He’s ultimately in control; a comforting thought when I feel like I have little to no control anymore. Devout Christian men and women throughout the ages have found His grace to be enough. I need more faith to believe that deep-down most days. It’s hard to smile when the pianos keep falling on my head, but I’m hoping they will at least make nice music as they fall and crash. There’s got to be a silver lining here, somewhere. My challenges have made me more sensitive to others than I ever would have been had I not been through the fire. I’ve learned a lot about what not to say to someone who is suffering and what people really want and need when they are hurting (hint: often it’s either just someone to listen or to volunteer their help in specific and practical ways).
In the end, I do a lot of work each day to keep this disposable body working. But it’s not forever. I have a lot to look forward to when this life is over and you better bet I’m going to have a good time in Heaven with no need to avoid anything at all!!!! Tons of hugs, no fear of food or gluten, no limitations on what I can do or where I can go, no pain, no sadness or frustration or anger, no doctors except the Great Physician, no medical bills (Ha! No bills, period!), and all joy and contentment, peace, and freedom in Christ. That sounds sooo good to me. And that gives me reason to smile.
This song I hear on the radio frequently has been set to Replay in my mind this week. The lyrics of the chorus is what I’m holding onto.
Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come
Please pray I will endure.