Over and over I have said that what I am doing is not easy. It is the hardest path I have chosen in my life, and every day is tremendous work, start to finish. Some days my impression is that very few people understand what that means . Hard paths are the best and most rewarding ones in life.
From childhood I have been an individual of deep thought and emotion. There are things with which I connect in ways that I cannot put into adequate words. Most of these are found in nature, whether it is adventure or beauty, and if the two are combined then all the better. It has never been in my nature to just disconnect from emotions, however I did determine a long time ago that if I do not do the work necessary to manage it, then it will be my undoing. There are times when that does not set well with others, and they do not understand why I am not being soft and sympathetic. They may think I am being cold when in reality I could be raging inside, usually because I want to scream for them to do something proactive to rescue themselves. Do you really not think I have been in your shoes? My case of Lupus might look mild to anyone just meeting me today (or anyone not paying attention). My true friends that have been there from day one, and made themselves trustworthy for my confidences, can tell you otherwise. I can accurately say that NONE of you were there when I couldn’t even stand up off the floor for months on end. That was before the support groups entirely. I went through that alone. It is part of what has made me the individual that I am today. Where do you think I built my foundation? At rock bottom, baby.
That ugly place I left behind.. the one full of agony, Vicodin, muscle relaxers, and despair… it’s been behind me since 2007. It was not however until two years ago that I really shook free of it and started to climb the rest of the way out. I know people that have never hit their rock bottom (though they may believe they have), and I know people that hit it and set up camp, and I even know a few that like me they stopped halfway up the ladder to enjoy the moderate reprieve. It’s still dark in there, and you don’t have to stick around. I am speaking metaphorically and I do that a lot. If it doesn’t apply to you, skip it. If your world is really dark.. then it probably applies.
Pain is inevitable. Sooner or later it touches all of us. Suffering is optional. I am going to keep repeating it until someone else gets it – and then some more until someone else does. If there are no military or good Veterans in your life, maybe you need to make friends with some. You can learn a lot from them, and I guarantee they will loyally be there to help you through the lessons. They’ve taken on the responsibility at it’s grittiest level to let themselves be torn down, rebuilt, molded, and perfected into beautiful strengths that only the most disciplined training can bring out of a human person. Professional athletes have to call on the same internal fire, and chose to drive themselves to new achievement for the intangible rewards it brings. We all have that choice, no matter what our level of capability is. We just have to choose to tap into it.
I grew up hearing the irritating words “the truth hurts” far too often. The philosophy was (I believe) abused. The truth is that the truth HEALS. It’s just that not everyone appreciates the mending process, and some are unwilling to accept that parts of it can be unpleasant, uncomfortable, distasteful, and even painful at times. Look at surgery as an example. Damage has to be inflicted in order to correct and repair, but it is sometimes necessary and when it is necessary then it is the right choice. Maybe something needs to be surgically removed from your inner workings, metaphorically speaking. When you hear a “cutting” truth, you react to it, and many chose to react negatively rather than to consider what is being presented. I’m sorry but I don’t have any anesthetic to present people when I am sharing concepts, and while I can mince words by choice, I tend to believe that for some people it dulls the message too much. Even in medical procedures, sometimes it just can’t be done that way. If you’re asleep when this message hits you, you’re not going to hear it. This is a wake-up call.
There is not a morning that I wake up and automatically want to get my shoes on and go for a jog. I have to stretch and move slow, and consider the messages my body is sending me. I have to converse with myself about what I want to do, what I am up to doing, what I need to push through, and what benefits and risks there are. This is after four years of treatment, the latter two including a fitness routine, two major surgeries in the midst, and a complete dietary overhaul for the last year. I will ALWAYS have to be circumspect with every move I make, every activity that I undertake, and every morsel that I consume. I committed to it because I decided that my life and living it was important to me – that I did not want to spend it miserable. This starts on the inside, dear ones. It is a decision. You cannot manifest a reality without first imagining it. There are days when I want to roll over and cry and go back to sleep. If I want the things that I desire to manifest, I do not have that luxury. This is MY choice about my own life.
Where there seems to be a problem is the reaction others have to cutting truths. If it’s not for you, then it’s not for you, but you don’t have to get upset about it in that case. Something unimportant in your world is a thing that you can walk by without a thought. If you reacted to it, maybe that’s what you need to be examining instead of getting upset at me or anyone else. When I share what I am doing, it is because I love other people enough to not want them to unnecessarily suffer. At no point have I presented anything as a cure-all for disease, but I do guarantee that you will see changes if you do the work. If you’re not willing to do that, then just admit it and drive on brothers and sisters. The hard fact is this… until you actually do what I have done, and make the sacrifices, the hard choices, discipline yourself, say no to “wants”, and stay consistent with it at length, then you cannot rightfully criticize those of us that are living proof of what can be done. You can’t have it both ways. Either admit you don’t want to do it, and accept where you are at, or make every effort that you can drag from the depths of your soul and give yourself a righteous voice with which to speak. If there were no successes, I would not share suggestions. I would not share the words of others that I admire, if I saw them to be hollow and unfounded. It is a basic truth that we are all individuals, and a disease like Lupus affects us all differently, but it does not discount the basic truths of how the human body functions. I promise you that 100% of the time how you treat your body will affect your outcome. You may not think it is enough, or significant, but it is still the truth. You are the one that decides whether it is worth the effort or not. It’s up to you.
There are people that I find quite inspiring to watch. Some of them are like me, and they have catastrophic illness to manage. Others are disabled physically in an obvious way, either missing limbs or unable to use them. Others still are amazingly fit and blessed, but they have been through horrific injuries that would make an ordinary person want to give up. Virtually all have been told NOT to do things, or that they would not be able to anymore, and they chose not to accept that prognosis. In the end, each of them has made the same choices that I did… that I continue to make. Life. Motion. Desire. Joy. Passion. Fire. Get some. Or don’t. Just don’t get mad at those of us that do. In embracing that you will be free.
It may be time soon for me to make a new video – one of me just talking to you about where I am at. Sometimes that reaches people better than plain text. You have not yet seen the changes that have taken place. I am living proof of what can be done. I am also completely sincere about wanting to help others. Truth.
Am I relieved? Sure, in a way. Am I sad, kind of. Am I scared? No, not really. Nothing has changed except that some person decided to get with the program. Sad, only a touch because you really always hope that some Dr. will walk in and say “Well, Ms. So and So, you have Blahblahblee and if you take this pill for a few days, it will all go away.” Not really hope, just a nice fantasy. Secretly though, we all wish that a Dr. would DISprove to us that we have something incurable and say something truly encouraging instead. Right now I just kind of wish I still had access to the rheumatologist that showed me the most that he cared about me for real, and spent so much time with me trying to get me back pieces of my life. Instead I have to navigate a half-assed system paid for by half-assed insurance, which altogether makes for one big complete ass, I think. Peachy.
Where is Dr. House when you need him?
Wouldn’t it be nice to actually hear, “It’s not Lupus… it’s never Lupus.” and get another diagnosis that’s just easier to manage? You know, one of those stupidly simple things that the team overlooks through a bunch of other failed treatments and then they all go Oooohhh DUH and fix it? Our choices seem to be Lupus or Mystery Disease. Yay. I can definitely accept Lupus better than Mystery Disease though.
Now that it’s in black and white, even if the current Primary isn’t on board, his opinion really doesn’t make any difference. I’m thinking of laminating this piece of paper for posterity.
By this time I’ve been on the Lupie-go-Round for about 6 months. For some that sounds like a short hop, considering it took them many years to get a diagnosis. To me right now it seems interminable because I’m going nowhere fast, and nobody in the HMO system (to remain nameless, even though I’d like to blast them to kingdom come right here) is listening to me. I’ve been advised to pay out of pocket for a non-HMO physician, as I’d have a better chance, but who’s going to pay for that for me? I can’t afford it. That would kind of be WHY I have insurance in the first place.
For the record, I’m also getting really tired of the question (from people outside the Lupus community I mean), “Do you have an official diagnosis yet?” The answer is no. That doesn’t make the symptoms go away, or the fact that I plainly had a positive ANA result that is slightly above a low positive… which means it’s not a low positive… it’s a positive. I won’t debate that fact with anyone. I know what I read. It also doesn’t change the documented fact that you don’t have to have precise labs to actually have Lupus. I don’t mind explaining that part to anyone that isn’t educated in the matter, but I do mind the disbelieving attitude I get from some people because I don’t line up with a textbook. If there’s one thing I’ve learned in my months of conversation with many SLE diagnosed individuals, it’s that there is no such thing as a perfect profile on anyone. We’re like a bunch of snowflakes and there’s no way around that fact.
This label of “Preclinical Disease” has been a source of entertainment for me since the rheumatologist handed it to me. While I appreciate his demeanor, professionalism, education, and the time he spent with me in our two appointments… it still isn’t right. I considered it the words of someone tied by the system who might otherwise say that yes, this looks like Lupus to me even though you’re not full-blown at this time. That, partly because he offered me Plaquenil if I wanted it. In looking up the definition of that diagnosis however, I am bothered by what I found. Here it is: Of or relating to the period of a disease before the appearance of symptoms. Now… what part of I have pain of all types, a malar rash, serious digestive distress, photosensitivity, drug & venom sensitivity, a sulfa drug allergy, blood pressure drops when I stand up, memory loss, hair loss, splinter hemorrhages under my nails, hyper and hypo pigmentation, anxiety, breathing difficulties, and a tendency to develop infections did he miss??? It isn’t like I have all those symptoms, in overwhelming capacity, at all times, every single day, but the major ones are ever-present enough to cause me concern and change the way I function daily. I struggle to maintain normalcy because I don’t want to be a burden or chore to anyone else. There are still many wonderful things I want to see and do in my life – and plan to. I do like being self-sufficient, more than anyone realizes I guess… but I digress. That definition bothers me. I have symptoms. How can I have a diagnostic label that states that I do not? So they didn’t find the precise lab result they were looking for. That’s not a symptom. It’s a technical analysis. Where are we trying to go with this? (Besides out the door so I’m not taking up their precious time.)
I know a woman who was told recently, as she was handed some prescriptions, that she didn’t have Lupus and NOT TO COME BACK. What??? I mean, my response to that is 1. Thanks anyway you self-righteous S.O.B., I won’t. and 2. I’ll be looking for a way to get you sanctioned for negligence in care and 3. Doesn’t anyone take the Hippocratic Oath and believe in it anymore? Maybe that SHOULD be required by law for a physician. Military requires an oath… Police service requires an oath… Why not the person that is supposedly there to make sure you stay healthy and don’t die before your time unnecessarily? Where are the Drs that actually care how you feel? I need one.
Call it what you want, something isn’t right. It isn’t like waiting will make it any better, and in the mean time one of the important tests that could show a variance in disease activity was NOT repeated at the time I actually had pain, even though I requested it. The explanation I was given was that the ANA is a “nonspecific test”. Well if it’s so unimportant, why did my positive result prompt you to run more tests back in February in the first place? Not only that, why is it that every Lupie I know has the ANA repeated when there seems to be a change in their well-being? If it’s an indicator of disease activity, CHECK IT! But no. She refused. After five long years of payments into the insurance plan, I’m relatively certain I’ve paid for the tests several times over. I would reassign myself simply because I’m sick of looking at her smug face, but I know that the system will provide me with someone under the same limitations. It’s become a what-does-it-matter situation. I also might have to drive 17 miles (further than now) to find someone I can tolerate. While it might lower my blood pressure a bit to have someone new, I don’t know if I want to add that kind of driving distance to my problems.
In conclusion, I can only surmise that the good Dr. Rheumy decided that he had to come up with some sort of diagnosis for me so I would stop worrying. It doesn’t make me not worry. It makes me angry.
I can remember as a young person being unwell so much of the time that I missed almost as much schooling as I got. Even when I was there I couldn’t really absorb what I needed to, and the system in those days was not designed to accommodate special needs unless you were REALLY special needs and had to be in a special class or held back. They didn’t really recognize learning disabilities and emotional issues in the same light that they do now. No one ever considered something like social anxiety or panic disorder, just dyslexia and I didn’t quite fit the profile. First it was my hearing under suspicion so I had a hearing test. No problems. Then it was eventually my eyes so I got glasses. That solved one problem – not being able to see the blackboard. It did not however adjust the attitudes of my tormenting classmates and arrogant teachers. The entire environment did more to tear me down as an individual than build me up as I believe an educating institute is supposed to. It wasn’t at all understood why I couldn’t run and play like other children because my ankles and feet hurt and I was exhausted physically. No one had a clue that the heat and the sun did terrible things to my energy levels and aggravated my sensitive digestive system, or that the food in the cafeteria might not be good for me. Nobody considered that the milk I was drinking could be the source of any of it either.
I got labeled so many things. Crybaby. Sensitive. Stubborn. Lazy. Rebellious. I have to ask the question… who would have a good attitude if they felt ill and were being teased and called names? I’ll cop to stubborn happily if it keeps me alive. I’ll claim sensitive all day long because I’d rather be that than a cold-hearted brute. Calling me a crybaby was just childish stupidity on the part of most of my classmates, considering they had no idea how bad I felt or why I didn’t want to be there. Shame on their parents for not teaching them better manners. I don’t care how young you are, no one has to be an ass. If there’s one thing I have never been however, it’s lazy. I have always loved the outdoors and activities. I have adored camping since I was too little to hike the trails myself and was being toted around Yosemite in a child-carrier backpack by my dad. I love to garden, I used to be a dancer (both ballroom and theatrical), and I was very fit when I was in my late teens and early twenties before the pain became an unwavering companion in my life. I posted a commentary about this issue on a site recently and someone picked out one phrase that they loved, which was, “When I can, I do.” Sometimes, I just can’t.
Sadly, the ones we look to for understanding are often not the best source. I am a member of a very large online support group for people with Lupus, those waiting for a diagnosis, and their supportive family & friends. More often than not, I see the same story reflected over and over of a family not grasping how difficult it is to be chronically ill and disbelieving there is anything truly wrong. As if it’s not enough that we have to deal with Drs that tell us we need to see a psychiatrist or read more books to improve memory function, and tell us they won’t run a test or prescribe a med that might help. We also have to face relatives and loved ones that tell us to get out and walk more, or get off those meds, or what we need is to eat less or take some vitamin, or think positively to cure all our ills. I can think of a handful of ladies I know that would love to take that walk if they wouldn’t collapse before they made it back into the house. I can think of about 2000 of them that would love a med-free life if it meant they could survive it. Every one of them would like a better quality of life if there were a simple solution. Doesn’t anyone ever consider that if it were as simple as that, we’d all already be doing it and not be going through all of this?! For the record, there are no miracle cures in a bottle for Lupus either, so don’t go there.
I am told that because I have an HMO, and my labs aren’t textbook perfect, I will never get a sensible diagnosis. For me that means I can’t get one at all because I can’t afford out of pocket expenses. Basically, I’m screwed. Mind you, I’ve arbitrarily placed myself on an anti-inflammatory diet and it does help. I also have a rheumatologist with a great personality, a sense of humor to keep up with my own, and good professional demeanor. He’s highly intelligent, well-educated, and tied by the throat by the HMO he works for so he’s not going to give it to me either. He did offer me Plaquenil but the side-effects scared the hell out of me. I think unless I go critical again I won’t be taking that, thanks. You have to decided as an individual which is the lesser of two evils. I look at it this way… Plaquenil slows the progression of SLE but he says I don’t have SLE. If it progresses later and he’s wrong, then I guess it’s his ass I’ll be chewing out for failure to diagnose, right? Maybe I’ll be fortunate enough to stay manageable, who knows. In the mean time, I have new labels. Osteoarthritis. Rosacea. Preclinical Disease. Degenerative Disc Disease.
Check that third one and tell me what you think it means. Looks to me like someone sees a real problem but is afraid to tell it like it is.
While we’re playing at this little dance, nobody at all has an explanation for my mysterious development of photosensitivity either. It’s supposed to be rosacea on my face but then why do even my arms fry like a trout after 2 minutes in the sun? Why do I itch and feel exhausted from heat and sun exposure? Why do high temps send me running for an air conditioned environment because I’m shaking, in a cold sweat, and in severe digestive cramps? Why am I so sensitive to so many meds that I can’t take most of what they throw at me? Why am I having so many problems with my memory and comprehension at my age? Why do my hands hurt when it isn’t even cold? Why does cold make them ache so bad I want to cry? Why any of it?
There is no answer. All the HMO wants is precision. I’m a number not a human to them. I’m just trying to get my quality of life back as best I can. It’s a shame there isn’t a real physician for me that wants to do what their oath states. I’m stuck managing it myself as best I can. Mine is not a unique story. Chances are, someone you know has Lupus…