It was late-Summer, 2015 when I knew I had to deal with an irritating pain in my fingers. I told my husband that I was going to have this issue checked out, and please, please don’t analyze it (engineering mentality), it really was no big deal. OMG, this was so far from the truth. I had no idea what was about to hit me. I had no idea that my life, as I knew it, was over. I didn’t want this issue that was overtaking me. I didn’t realize that my body was over reacting to a minor pain and was causing me increasingly more and more pain. It was doing so without my knowledge or understanding. All I could do was to say, “huh”? I wasn't really interested in understanding the idea of pain. I just knew that my fingers were becoming more painful; they were lightly tingling more and more. At that time, I was primarily just interested in learning how I could “fix” the issue. All I wanted was to deal with this irritation and simply get over it so I could return to my enjoyable, fun, busy life.
I had a very busy job, and I wanted to get over this “pain” and get back to work. The pain that I am referring to was very specific. It began immediately past my wrist on my left hand and then covered my entire hand (palm to fingers). When at work, the tips of my fingers would randomly feel different and slightly tingly. Come Christmas 2015, the pain in my hand was becoming exhausting to deal with. I remember not being able to hold up a plate to get food at a work Christmas celebration. I was having such a hard time at work and felt embarrassed and nervous. At this point, I was doing anything to help my fingers from not hitting the keyboard. I even tried wearing winter gloves while keyboarding. Unfortunately it only got progressively worse. I remember sitting at my desk in the early part of the afternoon one day at work thinking that if I could just get to work, and really focus, that I might actually catch up! But I wasn't able to; my left hand hurt too much. This strange feeling lingered off/on for many months before tingling and then the needle stabbing pain took over. At first, this feeling that was just an irritation was slowly turning into my own personal hell.
I felt my life shift dramatically. Everything I loved to do required help from my left hand! Every simple thing in my life just became complicated. Before this pain, I had a job that I really liked and a great relationship with my boss. I usually worked about 45-55 hours/week. It doesn’t sound like a lot, but it was a lot of hard work. I traveled frequently. My husband and I would take a winter and a fall trip anywhere from California to Florida or somewhere special closer to home. I would go on a trip with my sewing friends, or just go on a girls weekend somewhere. Because I am addicted to sewing clothes, I attended sewing classes, sewing group meetings, sewing retreats, etc. I loved riding bike on my own, or with my husband. We would also golf together. Before we married he taught me the game. It's been a special time for the two of us or also with another couple to be out on the green. I was happy; nothing was stopping me, except for the pain.
My life was suddenly filled with doctor visits, appointments with specialists, numerous tests, countless surgeries and physical therapy...a new and different lifestyle. Medical professionals were my new friends and completely took over my life.
Due to this over powering pain that had now gone on for months, I noticed that my communication skills were deteriorating. It was beginning to be hard to hold a conversation, even with a few people. I was becoming noise sensitive. When I was in a small group of people I could barely tolerate the sound of their voices. I found that noise caused my left hand to be more painful. My husband had to be with me when I left our home. I was becoming scared of being away from the safety of our home and being with others. For an extrovert, such as I am, this was very hard. The pain was ultimately ruling my life; it always stole all of the attention. I felt like I was not a part of the world. I felt like I was floating in a cloud of pain, unseen, un-relatable and could not fit in anywhere, anymore.
I couldn't watch a movie with any of violence in it. If I did, I would fall apart and cry uncontrollably. All of this emotion would make my hand hurt so much more. I had to be concerned about any emotions I could feel as emotions led me to more pain in my hand. It was ridiculous and I was growing weary; I cried out to God, wanting this to end! I kept asking God to help me thru this horrific situation.
Family and friends slowly quit calling me. They did want to know that I was okay, but couldn't find the words to encourage me beyond that. I felt very lonely.
I would have loved to have had someone drop by just for a little bit. They didn't need to talk much. Maybe we could play a game or something...anything.
After countless visits with neurologists, taking tests, minor day surgeries, etc., my husband was told of a doctor that was really good with the pain what I was dealing with. Up to this point, no one could tell me what was going on to cause this pain. Then one day I was in such horrific pain that my husband literally took me to the emergency room. There was a doctor at this hospital that my husband was told that could help me out. Unfortunately, we had no time to make an appointment; my pain was out of control. At the ER, an MRI was taken and the results indicated spinal stenosis. Very scary! Surgery was required immediately. A neuro surgeon came to do my surgery, and ultimately never left my side for the next couple of years. The doctor repaired the spinal stenosis but did not know if the pain would subside. Unfortunately, the pain grew steadily worse after the surgery. Fortunately this doctor came to be the person that showed me the way out of this mess. In the beginning, he would fit me into his schedule anytime the pain got out of control. The doctor wanted to support me and guide me through this mess. As rare as this is for a doctor, we would text all the time; he wanted to know what was going on with my situation. This doctor was a God send! We will never forget him.
This pain was ultimately named Complex Regional Pain Syndrome (CRPS), a neurological, complex case. This syndrome is so rare, I've only heard of a few people who've lived with it. Their ages vary from 17-years-old and up. My doctor, who works mainly with complex cases such as mine, taking about 5-10 cases at a time as to give the necessary study and attention to it. In the beginning, my doctor prescribed me five milligrams of Oxycodone every 4 hours, and ten milligrams of Oxycontin every twelve hours. I took both Oxy's orally.
Later, the oral medications were replaced by a pump that was installed into my body, by the spine. My doctor initially filled the pump with a drug that gave me an hallucination. In this hallucination, this guy was in bed with me and I heard him speak to me. Because of this, my Doctor removed this drug from the pump and replaced it with Dilaudid. The pump is now programed to constantly flow Dilaudid into the blood veins. Week by week, my Doctor added more Dilaudid to the pump. Depending on how much pain I felt, he would add more. Ultimately, I had twelve milligrams of Dilaudid in my pump.
To ease my mind, body and spirit, I often read from a devotional book. These devotionals were short enough for me to focus on an entire message. I did not drive and could not work. I lost my love for food and lost a lot of weight. I lost so much weight that I now weighed what I did when I was a teenager! As I mentioned before, this was such a lonely existence for me. I only thought about myself and how to deal with this pain.
Throughout this entire time there were 2 things that I missed so much. One was doing things with my husband, and the other is my strong passion for creating clothing. I missed the entire process. When I sew, first I have to find what I want to create. This entails looking through fashion magazines or pattern books for some inspiration. Then, I have to find the fabric. I usually look through my stash of fabric before going to find fabric in a store or online. When I know what I want to create and have the fabric, I get the desired pattern out of my collection of patterns, and I cut the pattern out. I tissue fit the pattern onto my body, which is just loosely pinning together the tissue of the pattern pieces. Next, I figure out what I want to change or manipulate about the pattern. After this is done, I lay the pattern pieces onto the fabric, cut it out and then sew it up.
The sewing process can take anywhere from a couple of days to a couple of weeks. It all depends on the complications that arise. I love when I add my own creativity, as I do not sew just to mimic the pattern, but to add my own touches to the clothing. These special, and unique ideas are what it’s all about!
I have battled with this pain, studying it, understanding it, hating it, and dealing with it for about 5 years. I am a totally different person than before. Now, I am more spiritual. I needed hope and I found hope in my relationship with God. If I could put my faith into this invisible King, I could hope and have faith in the power of prayer and a constant support. My prayer life grew at this point and has been supporting me in more ways than I knew possible. I am continually surprised by the peace passing all understanding I gain through prayer, Bible Study Groups and my Christian community.
I am incredibly grateful to my doctors, nurses, physical therapists, house cleaners and counselors. Because of their support and unconditional care, I can sew again! I can drive where I wish! I can’t work yet because I still have some issues with this pain. I just cannot type for more than an a short while and then I have to stop.
If I could give one piece of advice to someone in a rare and like situation, I would highly suggest to have something/someone to live for. Having something to look forward to when the pain clears. I will share with you what meant the world to me; something to live for.
It doesn’t matter what you choose, you need a vision and to feel you have a purpose in being here on this earth. It is so hard to focus on getting through such a dilemma, if you do not have something to bring you joy! Think about being involved with something like a group or hobby. Intentionally, create goals like stepping stones to reach the ability to achieve this desire.
I am not a dreamer, but I firmly believe in visualization. Visualize your future. It can be as simplistic or complex as you want. Life will carry on and you will float with it as you wish, just don't do it alone and work to restore that purposed driven life! I did and I am thankful. With baby steps, I am working my way through this pain and have a future!