A Growing Faith
(RSD Journal from 7/10 - 9/11)
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So much has happened since I wrote the first book. The great care-giving supervisor I had back then quit her job and even left the home health field altogether. I can tell you honestly that I was calm and trusting in God. I knew the pressure she was under at work and that she needed to make a change for her own well-being. She is so much better off now, which is good. She’s an exceptional person, to whom none can compare. Sadly, though, that leaves me without a buffer/ally/support. Hence, I have a lot more challenges and battles again. .
Also in the past year, I have incurred new injuries that present horrendous pain and greater limitation. These added disabilities could in time, apart from God’s grace, lead to not living or functioning on my own. God is still God, and He is still faithful and this is yet another level of trust and faith for me to climb. I don’t doubt His provision but I feel somewhat resistant to walking that path. Not that I would have a choice in the course of my life but there’s always a choice of attitude; whether we go peaceably or resentfully.
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In the marketing stage of the first book, I sent out letters to RSDS support groups to announce the book, and some people responded back; which lead to new friendships or acquaintances. This was great, of course, but it was also like culture shock because suddenly I was interacting with people who understood my disease/situation. There were so many stories; with both commonalities and differences. I was amazed at the number of people who were crusaders for the cause; through blogs, websites, events, etc. I kind of felt guilty that I had waited so long to get involved, that I had not acted sooner, that I had been an island unto myself, so to speak.
Now I’m seeing this vast movement of people, rallying together for the cause. The numbers are astonishing and there’s strength in numbers so, no doubt, there will be great effect. I have such hope for strides in research, leading to treatment and a possible cure. Though, at the same time, I have great sorrow that it may come too late for me. I have an e-mail friend who went to the hospital this weekend in an ambulance and was shocked that none of the ambulance crew had ever heard of RSD and later, at the hospital, only one person had heard of it. Because not much is known about the disease, those affected by it are subjected to standard protocol which could jeopardize them severely. Yet, in the same week, news broke that “researchers have identified a gene related to chronic pain; thereby, signaling a significant step toward better understanding and treating of the condition.” What exciting news that is!
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One of my closest friends hurt her foot two years ago. She has suffered intense pain and was recently diagnosed with RSD. The diagnosis came as no surprise because her symptoms were identical to mine. Her pain was so bad that the doctor had her on Morphine, until recently, when she went to an acupuncturist and it took away all her pain. She does quite well with the acupuncture as long as she goes three times a week, but if she misses a treatment she will re-lapse. Apparently, it’s like everything else out there; a band-aid , not a cure. But to be fair, she hasn’t been going very long. Time will tell if a cure is on the horizon. Yet, even without a cure, relief is welcome.
Ironically, I had gone to an acupuncturist years ago but, when he discovered I was also seeing a chiropractor, he stopped treating me. He said he wouldn’t treat me if I was seeing someone else because, when I get healed, he can’t take the credit for it. Since I would not give up my chiropractor who I had been seeing for probably a decade, I forfeited the chance at acupuncture. I hate that it worked out that way but I do understand his point. Eventually, even the chiropractor stopped treating me because I was too frail. He said I had the body of a 90 year old woman, and that was like twenty years ago.
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The new injuries I referred to in chapter one are injuries to the shoulders. Note that is plural. The left shoulder got injured first when I was stripping the bed. I tugged at the sheet and suddenly pain exploded in my shoulder, which radiated down my arm; encompassing the elbow and hand. The pain has lasted a year, so far. That limb is so vital to me maneuvering in and out of bed as I have to scoot across the bed on that elbow in order to get up. So now, much of that movement involves crying or screaming out in pain. Using my right side for that is not an option, as my right side is even more limited than the left side. And, because of the “mirror image” factor, my right shoulder has now been injured just by reaching for something. Needless to say, life has become even more challenging and faith is needed more than ever. I know not everyone believes in God and I know to them I may sound fanatical, but I know He is real by what He has done inside me. I often wonder…if pain and debilitation are so hard for me, a believer who leans on and trusts in a mighty God, how on earth does an unbeliever cope? Who do they lean on and trust in that is big enough or capable to effect their situation? Where do they get the strength to overcome trials and sorrow?
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Life is so different since the shoulder injury; not just the excruciating pain but also the added limitation. It doesn’t accommodate crafts like before. My new pastime is reading, my new endeavor is marketing and my new mission is raising public awareness of RSDS. Through publication of In the Blink of an Eye, I have created Facebook, My Space and You Tube accounts. Technology changes so rapidly there is always something new to learn, and I enjoy that. Do I mourn the lesser pain and the loss of crafts? Yes! But I appreciate the ability to be productive in any form.
In the years that I’ve had RSDS, it’s been my faith in God that has kept me going: the faith that He would sustain me through everything…and He has. But I remember one time when I resisted God. It was when I hurt my left hand, and I felt that my problems were too big for even God.
Now, with my shoulder so bad, I found myself resisting again…telling God I didn’t want to walk this road (pulling my hand away from his, like a child does to a parent). Naturally, that was unsettling. I knew my resistance was separating me from God, and ultimately I concluded that I was better off with God on this road than going my own way without Him. With that realization came the prayer that I would walk in sweet fellowship and submission to God.
I believe there are no super Christians; just ordinary people called or expected to do extraordinary things (like losing a loved one, living with disease, etc.) I can only pray (figuratively) that each time I fall down I will get right back up and, too, that I will finish well.
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Most all the people I’ve met who have RSDS are speaking out about it and working toward change. One woman has a website, a blog and a support group. Another woman has a wellness store, a website and a support group. Yet another has yard sales to benefit the RSDSA. The internet is loaded with blogs and websites related to RSDS. So, the classification of rare disease is not from the number of people affected by it. Rather, it is because so little is known about it. This past weekend (Labor Day) was the Muscular Dystrophy telethon and Jerry Lewis was saying that 45 years ago when they first started out, the chance of a cure was very slim. Now the chance of a cure is very good. Imagine what feelings of hope that stirred in me (and every other person with a debilitating disease) as it means there IS hope of a cure for RSDS.!
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In this heightened state with the new shoulder injuries, I have also had leg ulcers for 6 out of 10 months. Leg ulcers are dangerous and painful and require wound care treatment. In my case, poor circulation causes body fluids to seep out the pores, which leads to ulcers; but, with or without ulcers, the moisture from the weeping creates fungus (which is neither fun nor easy to deal with). When cleaning the ulcers and/or fungus, the wash cloths can’t be re-used, so that can be quite costly, buying wash cloths each week only to use them once and throw them away. Plus, linens need laundering every day from the weeping. That, too, is costly if you use commercial machines.
With regard to the shoulder, it may have a torn rotator cuff in addition to RSDS but, since I am not a candidate for surgery, we’re not pursuing it.
With regard to venous stasis ulcers, I have had them yet again and worse than ever. From the end of my toes to the mid shin was one big oozing, bleeding, mess that became one gigantic scab, which landed me in bed 24/7. Sadly, this was the fault of my nurse who saw the ulcers coming back and wouldn’t increase my visits/care. When my condition got this bad as a result of her neglect, we talked about it and she admitted her wrong but did not apologize. I had been very fond of her, but jeopardizing my health like this was too much for me to bear; not just pain-wise, but more so robbing me of my independence. However limited it had been, I treasured the ability to get around my apartment for things I needed; and now that was lost to me. It remains to be seen whether or not I will walk again. It doesn’t look good but faith and determination are powerful forces to which I cling. Regarding the nurse and what had transpired, I decided to let her go. So I changed agencies and ended up with someone better who was far more gentle and came every day, rain or shine. Another contention for me with the old nurse/agency was the standard treatment called “Debriding” which had worked for me in the past but was not working for me at this time. So I came away from that experience with a fierce determination to take charge of my own care and well-being, meaning that I would not sit back and let people dictate to me what would or wouldn’t be done concerning my care. So with the new agency I specified what I wanted, based on the uniqueness of my body i.e. special needs. With my doctor’s consent, the new nursing agency agreed to try this unorthodox treatment plan which worked out wonderfully for me. The ulcers , though, (being so bad) required total bed rest and took 2 months to heal enough for me to even attempt sitting up. Because of the many disabilities (particularly, the shoulder), the now healed ulcers were just the start of the road to recovery, as my body had weakened over two months and I had to begin the journey back with only 15 minutes of “sitting up” per day; increasing it a little more each week. When combined with the shoulder injury, I am not yet able to sit up on my own; though I’m determined to get there. And even if I manage (at some point) to do that, the next step would be ”getting up”. All of this is a lengthy process and a scary one in light of my limitations, but my faith in God sees me through. Although I am still in bed, I have no complaints of discomfort or discontent; which I find amazing. In addition to that, He has…at the worst time of my life, given me the best care possible. A skilled and caring provider, a close friend who came and stayed with me for several days at the height of the pain when I could do hardly nothing for myself. Plus, a friend who took over my grocery shopping to help out the caregiver; as well as assistance from neighbors who let me call them day or night, who also ran errands and cooked some meals. More stories of grace, just like the first book. I am also amazed that a wound that size did not scar one iota. Kudos to my doctor, who works with me, adapting to my special needs, and a nurse who does likewise. I am so blessed!…And if telling my story can help someone else, that would be an added blessing!
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On this journey of restoration, although I am intent on sitting up every day and regaining strength, there are times when new injuries prevent me from doing so; like today (a hip injury) and last week (a hand injury). It’s disappointing because it causes me to lose momentum, but I can’t dwell on it. I have to be tenacious in my pursuit. And I need people close to me to “go with the flow” by moving on when possible and holding back when necessary. Whether it’s a nurse, caregiver, friend or family member, they need to trust/believe me, not judge me. If they don’t trust/believe me, their perception will hurt and hinder me. Common perceptions (of people unrelated to the medical field) are: thinking I’m lazy, that I don’t try hard enough, I’m a drama queen/attention seeker, etc. These attitudes are toxic and may need to be weeded out of your life. Surround yourself with supportive, nurturing types. It adds so much to your quality of life.
Well, it is now weeks later and I have had a barrage of injuries, each worse than the last, which have all lingered. It‘s pretty discouraging. And my toes are falling more and more each day; also discouraging. Yesterday I cried because it’s looking more and more like this might be permanent. That doesn’t mean I’ve given up hope. It just means that I have to consider this might be the will of God, for a particular purpose or plan. As much as I dislike that thought, I’m trying to be yielded.
Here I am again, weeks later still. Not only have I not healed from the injuries I incurred while trying each day to sit up, the accumulation of injuries to the shoulder, back and buttocks have rendered me more impaired. Plus, my shoulder and hip have become concave; meaning atrophied (which prevents me from even trying to sit up). I am beside myself! How does one explain (or live) a total trust in God despite feeling the weight and heaviness of despair? How does one abide with the almighty when everything dear and vital to them has been stripped away? I started to say “I don’t know.” Then I realized that actually I do know. I’m referring to the love…the love that surpasses any I have ever known, a love that is truly unconditional and cares and provides for me better than any other ever has; strong enough to give “peace that passes all understanding” and “calm amidst the storm”.
If I couldn’t abide in the Lord, I would have TOTAL despair and darkness.
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I started a blog recently, hoping to help and affect others with RSD; hoping to raise public awareness, as well. I try to write in it only when I feel inspired of God, instead of my natural ramblings. I recently wrote a song about my journey with RSD and it has been put to music. I heard it sung today for the first time and it brought me to tears. I pray that God will expedite the full recording of it so I can share it with the RSD community. The world of chronic pain sufferers is increasingly vast and it’s important for everyone to tell their story for the sake of awareness and research. So, herein, is Part Two of my story. Why do I call it A Growing Faith? Because the less able I become, the more obvious His provision is. I could go on but that’s the bottom line.
At present, I am still in bed; unable to get up on my own and too frail to be lifted by a person or a device. Since being in bed, I have found it very hard to read lying down, although I am able to craft lying down. Who knew?! Lastly, believing there is a divine purpose in this, how can I complain about my suffering to the Lord Jesus Christ, knowing all that HE SUFFERED FOR ME?
