It’s time I give some backstory about who I am. Readers from Tala’s Reflections, my friends from the last 3 years plus, my family, and everyone that knows me from the Lupus community is caught up by now, but there are new readers and friends present. Thank you to each of you for your interest. Thank you for encouraging me in return.
I grew up loving everything outdoors. I camped with my family from the time I was a baby on up. I was never afraid of playing in the mud, or with toads, or exploring, and the older I got the more I wanted to do. Swimming, hiking, camping, cycling, and skating, all as often as I could but there were financial limitations beyond that. My love for dance drove me to find ways to learn various styles but I never had much formal training. When I had access to a gym room for a few years, I did some strength training with weights as well. When I was 17-18 however, my life derailed in an abusive relationship that lasted about a year. That left me with a concussion, a lot of bruises and trauma, and an AC joint separation in my left shoulder which continued to cause me discomfort for the next 26 years until it went critical with impingement syndrome, and the beginnings of rotator cuff tears. (I am rehabilitating now from clavicular resection and subacromial decompression on both shoulders done less than 2 years ago, 6 months apart.) Having a constant reminder of that time in my life, and those events, didn’t slow me down any but it was unpleasant. There were times when it limited my capabilities in the activities I loved most, especially when I needed a strong back or arms. Lifting and carrying a backpack is something I’ve always done in spite of the pain, but it is nice to know that I can do it now without that extra difficulty. I am very happy to report that in spite of how slow a Lupus patient tends to mend, I have full range of motion back on both sides and I am rebuilding strength in my rotator cuff muscles now. Best of all that annoying crawling sensation along the nerve path up the back of my left shoulder seems to have ceased for good. That was getting old.
During the same time frame that I was going to physical therapy for both of my surgeries last year, I also went through PT for my low back, SI joint, and sciatic nerve injuries. I was very busy. (God bless Beaver Medical and Loma Linda staff, because they are the best!) I was also very determined to rebuild, and very fed up with feeling trapped inside physical limitations. I had become someone that I didn’t even recognize from the inside to the outside, and I could see that I was at a crossroads where it was time to pick a direction. I have had PT before, several times, but this time I was in the capable hands of far better practitioners and had a determination to get more out of it. I even consulted with them about a few other issues while I had their attention, from my thumbs to my feet and ankles. I think by now I own braces for just about any joint I could need one for, because over the years you name it… it’s probably caused me pain. I have only known about Lupus for three or four years. I have been dealing with the effects of it for over a decade.
Back around age 15 I became interested in healthier foods. I was at a more self-aware stage in my life and wanted to make personal changes for my well-being. I had a childhood saturated with illness – every cold and flu that was going around, and infections that followed, plus the chronic issues that no one had a name for. When I hear people complain now about wishing to go back to the way they were before (before developing autoimmune diseases), sometimes it’s difficult for me to be tolerant, I will confess. I do not know what it is like to have a day without physical pain of some type, and that goes back to a very young age. I don’t have a memory to look back on with longing as a care-free time devoid of pain. This is my life, and most of it lived that way without explanation. I have probably had Fibromyalgia that long.
I have been asked before, “How do you live like that?” Simply put, I wasn’t given a choice. It has even been suggested by others that they wouldn’t have wanted to live if it had been them. I will admit to times in my life when it was unappealing to continue breathing, but until you have been the one being tested, you have no idea what you are capable of or the strengths you really possess. Both of my falls (age 15, age 35) had the potential for putting me in a wheelchair, but that didn’t happen. I needed one to get to and from the car for Dr appointments and PT for a while later on in 2006, but at home I refused to take the obvious route. I was so determined that I crawled when I had to, and as bad as that year was I don’t regret the fight I put up. I will also admit to hitting rock bottom that year and giving up on everything but getting on my feet again. I was even uncertain about that in my worst moments. What matters is not the depth of your despair, but rather what you choose to do with it, and whether you dwell there. As you can see from my videos, I did not dwell there. Getting a diagnosis of Lupus, Fibromyalgia, and the related autoimmune conditions was not a shocking blow to me. It was a relief. I already knew something was wrong, and I was already sick. Diagnosis meant direction, treatment, and solutions. It was just a sign post.
The most off-balance I have been in recent years from a conversation with one of my Dr’s was about my heart. When they told me I had cardiomyopathy, my medical terminology trained mind was screaming “heart disease?!” and trying to figure out what I had done wrong. To be hearing that at age 44/45 is not what you expect. It took me a few days to do what I usually do, which is get the exact name (left ventricular hypertrophy) and look it up so I could understand what was happening – and why. I learned a lot. Initially THAT diagnosis took a toll on me, and I was fearful and confused. Eventually I bounced back and decided to take charge of matters again, because it’s just what I do. I was being told a lot of negative things about what to expect and what I had to live with, and hearing the word “permanent” a lot (again?!). It bothered me more and more, every time I heard it, in the light of what I was reading about specific medications. In the end I chose a med that I knew gave me a chance for recovery. Then I added another that my Dr recommended for better control of my elevated and sometimes erratic pulse. Okay, so I may be stuck with a beta blocker for the rest of my life BUT… guess what my stress test a year later revealed? Normal function. The left ventricle now has normal output again, even when under exertion. How much life would I be missing out on if I took any of these things as a reason to just check out?
I have achieved, and lost, remission. I have good days, bad days, and worse days. I have days that I would even call great, in spite of the fact that they slow down towards the end. With Lupus, sometimes you really can’t tell what it is doing, but regardless of lab reports or symptoms either one, I am still going to get up tomorrow morning and keep moving forward. When I hear the words “be careful”, I am reminded of a teaching. It means to be “full of care”, which is not a state that I want to achieve – to fret. I might at times look a little insane to some people for the direction I have chosen, but I had to make a choice. It was not a crossroads I encountered this year, it was a clearly defined fork in the road with an insurmountable rock wall in the middle. I could give in and go after disability, try to work at home as much as possible in some capacity, and accept defeat. (This is a personal debate, and not a commentary on anyone else’s needs for their own circumstances.) On the other hand, I could choose the path less traveled that was probably going to be extremely difficult, require a lot of self discipline and demands, and fight like hell for something else. I knew from prior experience how much hard work that would mean. I mentally stood there at that division for a few days, mulling over the commitment, because it had to be all-in if I turned that way. I realized that I have been going through the motions on many things without committing entirely. I’ve been in the middle of the road. Mediocrity again? The next step was complacency. I wondered… “How is it that I am back here again?”, and I let go. I really and truly let go of some things that have been holding me back. I committed.
The bottom line is this… I am not cut out for life from a recliner. I am not okay with being stuck flat on my back, and having been there I do know. That to me is death. I am only 46 years old. I have been asked bluntly whether Lupus is “fatal”, to which I have to say birth is a death sentence. Life is fatal. Some of us may have a slightly better idea of what COULD be our eventual demise, but if we spend all of our time staring at that potential fate, we miss out on our higher potentials. I decided years ago that I was not going to waste time worrying about that. The truth that a lot of people are not ready to hear is that we don’t have a specific expiration date, and no Dr can tell you when that is if you’re not ready to go. So are you done yet? I sure am not.
A dear friend of many years has always said of me that I don’t do anything halfway. “When she does anything, she does it big,” he says. Those words have come back to me in some of my hardest times, and reminded me of who I am. (Thank you, Robby.) I am now past trying to do things carefully or within reason. I know that I will have to dig deep for what I want. Would I be me if I did not? 🙂