Family, Friends, and Dumbasses…part one

“What doesn’t kill you makes you stronger!” “The Lord promises never to give you more than you can handle with His help.” “You do not look disabled.” “Why do I have to pay for lazy freeloaders in society?” “They just want pain medication, I do not think they are suffering as bad as they think they are.” “What do you mean you need my help with that…you have always taken care of this stuff!?” I work all day and you expect me to help with housework when I come home?”

            Above, a few shining examples of phrases offered or questions asked out of good intentions, frustration, ignorance, and/or just plain stupidity. When you are disabled it feels as if you are always required to defend your actions, choices, or inactions.  Most of the healthy in society will expend volumes of energy pretending you do not exist. This is very prominent if you have an obvious physical ailment. People will not meet your gaze as if they might somehow catch what you have just by treating you as if you were a fellow human being and not an obstacle in their day. Due to the complexity of all relationships, I will attempt to limit the subject to a disabled person’s reactions to family, friends, and dumbasses in society and their reaction to the disabled person.

            Okay, you have just begun to deal with all the medical, emotional, and psychological crap associated with living with a chronic disease and now you must learn how to keep your own relationships healthy despite all the changes. Moreover, you will now face a horde of people that range from well-intentioned folks to completely ignorant dehumanizing monsters. The transition time from “normal” to very “different”  is long and  highly stressful. People who love you will be lost and confused because they do not know how to fix the situation. They offer suggestion after suggestion to try this, that, or another thing that might offer a cure for what ails you. They strongly recommend that you get half a dozen second opinions until you decide that you have had enough. They too, must transition with you and when your world is falling in around you and you feel as if you are flailing in the dark trying to grasp something to halt your decent you are in no position to set the course. Some couples do not survive this time period. We, as human beings, are fixers and need to be able to face a problem and divine a solution. When a solution does not exist and we must then accept the inevitable truths we are shaken to the core. Everything we thought we knew as certain is no longer certain. Some of the plans we made together as a family may not be able to see fulfillment. Everybody who loves you will need to make a decision to support and love you or to flee the situation. Sadly, some spouses and/or friends tend to flee. The vow declares…”in sickness and in health…” but no one expects their ‘happily ever after’ to be disrupted by an illness. Family and friends will now have difficulty interacting with you especially as your lifestyle changes.

            In the beginning you will continue to do everything you did before determined that nothing is going to change. You consider the feelings of those in your life above your own and agree to tasks or outings that you know you will pay for later in the degree of pain you suffer. Nevertheless,  you will suffer in silence so as not to disrupt their good time. That may go on for years before you come to the realization that you cannot keep it up any longer. You are the one in pain, you are the one doing the suffering and you must start making changes. As it becomes obvious to both you and those around you that things need to change to accommodate  your illness, the relationships will strain. The level of strain depends heavily upon you and how you are handling your illness. Having the initial pity party and then reserving the right to have one every now and again is fine but if you choose to live in the land of pity, self-loathing, and depression then you will become a very lonely person. Is this situation depressing and pity worthy? Hell yes, BUT neither of those factors will help you survive and thrive. Yes, things are going to change but those changes may be great opportunities that you had never dreamt possible. You may lose a few friends who cannot handle watching you get worse throughout the years. Fine, if they cannot handle it you certainly do not need them around whispering their doubts and fears in your ear. You have plenty of your own with which you must control.  You will find inner strength that you never knew you had. Are you going to be strong 24/7? Ahhh, …no…who do you think you are superman? No one is strong all the time but you do need to be strict with yourself because once you barrel down that road of self-pity and self-loathing it is very, very difficult to get back. There are a billion valid reasons to stay in bed and bemoan your circumstances.  When it hurts to sit up and swing your legs over the side of the bed it is then that  you need to concentrate on a couple other reasons that are strong enough motivators to get your butt out of that bed. Every morning is a battle and whether it arrives in the am or pm is of little consequence but the status of victory or defeat is entirely up to you. Is that fair? No. However, it is reality and that is the land in which you must dwell because it is a waste of time and precious energy to indulge in  the stream of thought concerning the unfairness of it all. You cannot afford to take a dip in that stream because it has dangerous undercurrents that will pull you to the depths. In the iconic words of that absent-minded blue fish, “Just keep swimming…”

Five Years

I was diagnosed with systemic rheumatoid arthritis at the age of five. I was born to a steelworker and a housewife. We had good insurance and income until my father was laid off and then we had very little. I was raised to think nothing of the arthritis; instead, I was told by more than one health professional that the RA would likely go away by the time I was a teen. In 1974, there were few options for anyone who had arthritis let alone for children with the disease and even less was known about it among the lay population. By the time I reached adolescence the disease was not the only major thing going on in my life so it took a back burner to everything else life dished out. In fact, I never considered myself sickly and was always surprised when someone showed me sympathy for the disease. I had no idea what it all meant and no one in my family knew more than just the basics. You must remember that it was the 1970’s and personal computers were in their infancy and far, far, out of reach for my family even if it had been offered to the public. Hence, there were not many places to look up information about childhood diseases. Additionally, I was one of three children and that left precious few hours in the day. The mindset in those days was to listen to the medical professional as if they held the only truth and this was even more pertinent to the blue collar sect and all those below.

            The good that came from being raised in this type of atmosphere is the fact that I did not even think to feel sorry for myself, nor was I allowed to baby myself. The thought not to do everything the other kids did never crossed my mind. I was sick, a lot, but I never thought of myself as a sickly kid because I was not treated as such. I do not remember a day without aches and pains so this became my “normal”. I just assumed everyone dealt with what I had to each day. This was my life and I did not question it; instead, I lived it. It was not until I was in middle school that I began to realize that there was something that set me apart from the rest; however, it wouldn’t be until I reached college that true understanding would come. Even then the disease was pushed into the shadows because I did not have the time, energy, or desire to deal with it. I had been determined to be “normal” ever since grade school when the other kids began treating me differently. I did not have medical insurance between the ages of 17 and 27; therefore, I treated the symptoms of the disease with high doses of  OTC aspirin. I was never attracted by the drug or alcohol scene so that factor never became an issue.

            At 42 years of age, I have been dealing with inadequate care for this progressive and aggressive disease for the past 37 years. It has not been an easy path to walk, both literally and figuratively. There have been moments when I could not bear the thought of spending one more moment in pain let alone the next 60 years. If you allow it, this type of disease will rob you of everything. It will destroy who you are, who you hope to become, and how you are remembered years after you have passed. It will steal your happiness and contentment. It will annihilate your dreams. It causes hatred, bitterness, and envy to build to nuclear levels of destruction until you do not even want to be around yourself. However, it can only do any of these things if you allow it too. The only thing this disease will do with 100% certainty is corrode your body but it is up to you to decide if you will spend the rest of your life waiting for the torture to finally cease or spend each moment living toward fulfillment and peace. Trust me when I say that these words are not spoken lightly, for I continue to carry the weight of this burden even now.  I have made plan after plan for my life but they have not come to fruition. Despite the strong desire to do otherwise, I have not given up.  I am not a super human person resolved to be tough regardless of the pain. On the contrary, there are many a day where I crawl into a hole and pull the dirt in behind me caring little for anything outside my misery. Each moment is a battle. Some are victories and some…are not.

            What is the key then? What turns the tide? Hope. Hope will give you strength; therefore, you must become determined to find that which gives you hope. For me, it is my relationship with my heavenly Father. My hope rests in him and I take comfort in knowing that my body will be whole again someday and that there does exist a day when I will awake without pain. There may be no cure from the medical community; therefore, I do not waste my time hoping for one. Instead, I pray for strength and endurance. I pray that I might glean wisdom through my sufferings. However, there are many a day where I pray for all just to stop. When you are chronically suffering, I would consider you ill balanced if you did not think, ask, or pray for release from the pain at some point or another. I draw heavily upon the strength of Christ Jesus because this frail body cannot do it alone.

            At five years old, I had no idea why I could not walk. I had no idea why I was in so much pain or why my mother cried. I had no clue of what was to come or how difficult the road would become but I still hold to my hope even if it has been translucent at times. Do not give up, do not surrender, and never tell yourself that the fight just isn’t worth it.

Wait a sec, hold the phone, put the ponies back in the corral…

 You’ve now had time to digest the information. Actually, you may be more confused and frightened than ever because you may feel as if an information “bomb” has knocked you out of the realm in which you were sure of how things worked. Now nothing makes sense. How could I develop this type of disease? I am far too young. The doc said there was no cure but “we” had plenty of treatment options to try. He said it like it was a good thing but now fear of the known replaces fear of the unknown. You thought a diagnosis would make you feel better and on some level it does but the more you learn the more frightened and disheartened you become. Your friends and family act as if it is nothing serious and you may find yourself beginning to resent their reaction because you are in pain and it is not going away. This isn’t some minor problem, you are going to have this the rest of your life. What was the term the doctor used…progressive? That means…this is going to get worse, much worse but it is not going to kill me? Your mind begins to race again as you try to process this overload and subsequent realizations. What are you going to do? How are you going to work? What kind of future do you have? What is my future going to look like?

            As your good days and bad days hit at seemingly random times, you begin to take note of what circumstances surround each type of day. You quickly find that the weather plays a huge role in your pain. The higher the barometric pressure coupled with the rapidity of the change will dictate whether it will be a day of dread or of your new level of “normalcy”. No one understands that your lifestyle must change. Heck, you are having great difficulty understanding the changes you must make. This is not an easy transition and you will fight it every step of the way. You start off by lying to yourself and ignoring the symptoms until they knock you on your butt because they will not be ignored. You refuse to ride in a scooter type vehicle because those are for “disabled” people and you are NOT disabled…are you? My God, what if you cannot work…will you become a “burden” on society? How will you pay your bills? What kind of insurance do you have?  You are nowhere near retirement age so what are you going to do, how are you going to live? If you have children it becomes more complicated especially if you are the bread winner.

            Depending on how you react to major life stress will dictate the order in which you arrive at the various coping mechanisms. I have found that people who have developed arthritis during childhood have stronger and more effective coping mechanisms in regards to their disease and life in general. People who develop disease onset after a relatively long period of normal activity, say in their 30-40’s, have a much more difficult time accepting and coping with the disease. You see, folks who were essentially born with the disease have never known a day without pain and/or limitation in some fashion. People who have lived their lives with no real incidents of serious health issues experience mourning when they are hit with this type of life altering disease. Likewise, folks who develop arthritis in middle age experience a very active voracious level of the disease. It’s almost as if the disease were making up for lost time. This type of disease is devastating on every level. You will question your faith, your relationships, and your own sanity at times. Nothing is “normal” any longer. Life, as you know it, is over and the journey begins to rebuild your future. There are six stages of grief and you will revisit them time and again throughout the progression of the disease because your mind and soul need answers and when it is faced with the impossible it has to try to make sense of everything. Very soon you will come to a horrific realization. That day in the doctor’s office when you felt relief when told that your ailment was not terminal was borne out of ignorance, for now you realize what he was telling you. People with chronic deteriorating diseases are given a life sentence of torture, ridicule, condemnation, self-defamation, depression, pain, deformity, a constant fight for treatment depending on their socioeconomic level in society and no possibility of release. So what are you supposed to do…give up, give in, and accept societal labels and live down to their stereotypes? No…Hell No!

“Just Arthritis…”

“Just” Arthritis…

          Yes these two small words are quite possibly the most heinous example of  blatant ignorance. There exists a host of despicable diseases out there that ravage the body, mind and soul. Each causing pain and heartache regardless of what label the medical community hangs on it.  Chronic pain, disability, the loss of self and the abandonment of hope are just a few of the things that can result from chronic ailments of any kind and/or origin. Anyone who suggests one disease or ailment is worse than another lacks knowledge, experience and/or compassion. There are numerous factors that affect how a person copes with the ailment with which they are trying to survive.  So many exist that I will come back to that factor a little later.

          A doctor who dares  utter these words should be run from at warp speed, for he or she has zero knowledge or competence in the field of auto-immune disorders. The fact is that there are numerous types of arthritis that affect multiple areas of the body at various times in a person’s life. Although arthritis is commonly thought to be an “old person’s disease”, it is not. As a society, we have been groomed to think of it as a common and inevitable ailment for all old persons. One Hollywood skit after another since it’s very inception has used arthritis as a gag joke downplaying the seriousness of the disease. Most of us can remember the one liners from some old codger predicting a storm because his “rheumatism” was acting up. It was meant to be funny, it was meant to personify a specific type of character and we accepted the misinformation because we had no reason to counter it. Therefore, when someone says they have arthritis we often have a skewed view of the reality of that diagnosis.

          First, there are numerous types of arthritis making the term more of a generic label than a definitive diagnosis. The two most common types are osteoarthritis and rheumatoid arthritis. The first usually results from life-long wear and tear on the  joints. This type of arthritis can also result from an injury. The cartilage between the joints cushions the intersection of the bones so that the bones do not rub directly together. There is also a “pillow” of fluid around the joints termed synovial fluid. Over time the stress on the joints wears down the cartilage and causes an inflammation of this fluid causing swelling and pain. This is the type of arthritis many people could develop in the later years of their life; however, the onset of the disease can happen at any age.

          Arthritis is usually symmetrical, meaning if you have it in your  right shoulder then you likely have it in your left shoulder as well. Hands, feet, knees, shoulders, and hips are the most common points of joint destruction. However, there are levels of severity that range from causing mild pain and deformity to severe pain, massive deformity, disability, and possible death.

          The second most common type of arthritis is rheumatoid and this is where the auto-immune system turns on the body that it is supposed to protect. It can develop at any age and at varying degrees of severity. It can hit one or more joints and organs. Additionally, the activity of disease has a host of consequent ailments that create further pain, deformity and/or disability,

          For some unknown reason, the immune system wrongly interprets the body’s normal systems as invaders and it attacks them aggressively. The specialists, rheumatologists, do not know what triggers the immune system in one person to go haywire and not in another. Sure, they have identified all kinds of amino acids and other chemical compounds within a person who has rheumatoid arthritis that are misbehaving but they have not figured out why these chemicals are not doing their job properly. However, there exists a plethora of medications and treatments that target each of the chemicals and/ or hormones that are identified as misbehaving in some fashion. Arthritis is a multibillion dollar business as are all other chronic diseases.

           All of the disease modifying medications in the mainstream market suppress the immune system or attempt to control the “discomfort” resultant from the activity of the disease. All of the medications are toxic to varying degrees. The worse your arthritis is, the more out of control it has become the more dangerous and expensive the medications become. Presently, the rising star in the treatment of arthritis and other auto-immune disorders is something called a biological. Hundreds of commercials flood our televisions advertising the miraculous results of these biologics. Each commercial ends with an equally long list of possible side-effects. The biologics do work for many people because they suppress the immune system that is ravaging the body. Anyone considering these medications should make certain they are fully informed of all the possible side-effects before beginning treatment. A few problems arise with this new star in the medical community. Suppressing the immune system is very dangerous because it leaves the body open to all types of cancers and other diseases. Some patients have developed serious infections that have claimed their lives. Additionally, this family of miracle drugs are very expensive, $1500 a shot, which causes the insurance companies to recoil and find any number of reasons to deny treatment to the patient. Since the average prescription for biologicals is two injections per month, the insurers are less inclined to approve the drug. The hope of the medical community is that these biologics will replace the more toxic drugs traditionally used to suppress the immune system like steroids and cancer medications such as methotrexate.           Both these medications suppress the immune system, are far cheaper than the biologics and have a host of deadly side effects. Nevertheless, they generally do the same job as the biologics so the doctors have to fight the insurance companies to obtain the less dangerous option for their patients. If the doctor is competent and a stellar human being then he/she will fight the insurance companies so that you can obtain the better treatment. It took me a lifetime to find such a stellar human being, Dr. Lori Lavelle. she is the best rheumatologist with which I have ever worked.

          If you are looking to conduct further research into your specific type of arthritis then I recommend utilizing the databases of the Arthritis foundation or the Mayo Clinic. One positive factor to the rampant number of people living with this disease is the amount of research available to the general public. The best advocate for you is you. If you go on this journey of fact finding, you will discover that arthritis is anything but, “just”.

So…I’m not dying?

You have been feeling like crap for a long time and have run out of excuses to explain it so you give in to the pressure of your family and friends and make an appointment with the doctor. He/She then takes you down a path of diagnostic testing to find out what ails you. After weeks or months, all the test results are in and you are to have a meeting with the doc.  While awaiting this “disclosure” meeting your mind races with all the worst case scenarios that you can conjure. Don’t worry, if you lack a good working knowledge of possible medical ailments there are always helpful friends, family, and the occasional stranger that will be more than thrilled to detail their experiences with the medical community.

The big day arrives and you walk into the doc’s office carrying all your own worst nightmares and those of everyone else you know. You hear an almost audible creek from the chair as you sit straining against the burdens you bear. The doc is not in the room yet and you and whoever accompanied you make nonsensical chit chat waiting for the boom.  Your mind races to fixate on anything that doesn’t concern the reason you are there. In fact, by the time the doctor arrives you know how many stick pins are in the round container sitting on the desk.  You begin praising yourself for accomplishing the simple task especially since you were able to count each color individually.  Voices  beyond the door behind you snap you back to reality and you become irritated because those voices are happily discussing their upcoming vacations. You begin a mental rant of the insensitivity of those disembodied voices when the doctor swings the door wide and quickly wipes the broad toothy grin from his face.

He greets you and your companion then sits to look over your chart and subsequent test results. You stare incredulously at him thinking how much time you have spent over the past month waiting for these blasted test results and he just decides to look at them now??? After a cursory glance at the notes, he looks up and provides you with a sedate smile then begins to barrage you with medical techno mumbo jumbo that you do not understand.  You catch a few recognizable terms here and there…arthritis… discomfort… treatments… prescriptions… non-lethal…wait, he said non-lethal, right?  “So, I’m not dying…?” Your question, which broke his steady stream of medical babble, reflected as surprise in his expression. Whether it was surprise that you dared interrupt him or that you thought your condition terminal, you could not tell. A slight chuckle and a flood of reassuring words convinced you that you were not going to die from this ailment and that there were many treatments for the condition.   Yet, it was his next statement that would later consume many hours of your thoughts. “It’s just arthritis…and it will not kill you.” After the relief swept the dread away,  your mind struggled to get around the idea that a 40 year old could have arthritis. Arthritis is an old person’s disease so how on earth can I have it? The doc was explaining the different treatment options he was going to try and assured you that you needn’t see a specialist because he could prescribe you the medicine you will need. “Do you have any questions?”, the doc finally asked. Of course your mind that had just been overflowing with every imaginable question goes completely blank.  You mutter something that indicates that you do not have any questions and are then ushered out the door with a fist full of prescriptions and a pat on the back. The front desk nurse looks down at the paper and says, Looks like the doc wants to see you again in 3 months?  Wow, 3 months what the heck are you supposed to do for 3 months? You have been in a lot of pain, are this prescriptions going to work? What happens if they don’t? Your mind now fills with all the racing questions it had forgotten just a few moments before.  She hands you the appointment card and you shuffle from the office. The person that came with you is all smiles, patting you on the back congratulating you that is was “just” arthritis and nothing serious. There is that word again and it is already starting to annoy you but you are not quite certain why…  Instead of saying anything, you smile back and agree. Over the next three months it becomes painfully clear why the word annoyed you and why it makes you angry now. Angry at the doc for saying it in the first place and then at everyone else who has said it since.   You begin a crusade of fact finding all information about arthritis trying to determine what you are really facing. After all, you reason this pain cannot be simple arthritis…could it?