Strife

angry-kids

strife – noun – angry or bitter disagreement over fundamental issues; conflict. “strife within the community”

synonyms: conflict, friction, discord, disagreement, dissension, dispute, argument, quarreling, wrangling, bickering, controversy

For two weeks, my beloved online community for Sarcoidosis has been dealing with strife. I have successfully stayed out of the fray but feel compelled to write about its impact.

Let me start by saying that I have not felt this level of strife since I became sick. My so-called friends just faded away when I could no longer be their good-time girl, their shelter in a storm, their staunch supporter, or their financial solution. There were no angry words, no fall-out fighting, no insults, no bickering. They just walked away, no phone calls, no e-mails, no slowed progression of contact, just gone.

I felt abandoned at first. I got over it. I had too much to deal with having Sarcoidosis and trying to live. A social life was too much to ask for anyway.

A few years in, I found this awesome on-line community of Sarc sufferers just like me. They were kind and supportive, funny and compassionate, sick and sometimes sad, creative and passionate and I was so very grateful to have this venue in my ‘new’ small world. Like any group of friends, we can debate, argue, make-up, agree to disagree and move on. However, unlike most groups of friends, we come from all over the world. We have different religions, politics, upbringing, attitudes, and experiences.

It is awesome. I can log on any given day and get a boost to my spirit, read a funny story, cry about someone who is facing issues I wouldn’t wish on anyone, and give or receive sage advice on just about anything. Sounds like a sick person’s Utopia, doesn’t it? Well, it is. To some, it is the only social lifeline we have. When the world cannot understand us, we can understand each other. We can talk about things that our family and friends will never
hear. We feel safe, protected, empowered with the others that are just like us.

Just like any community, there is a hierarchy. There are those that are more knowledgable, more sympathetic, more seasoned, more vocal and yes, even more confrontational when challenged. And, as in any community, there are many more that stay quietly ‘behind the scenes’ reading, learning, drawing strength from those that speak out. All of these people add value to my daily life.

That is why I choose to stay out of it. I am an underdog supporter. I will stand for the weak. The strong can speak for themselves and make decisions based on what is best for them. I respect those choices. And, therein lies the rub. This recent strife has disrupted our support system. It has placed a burden on numerous people, a burden that should not be there. Some have left the site, possibly for good, and some are just not coming around
much. Like any space that is created, it will be filled. I can only hope that it is filled with the same level of personal fortitude and wisdom that has been lost.

So, while I understand strife to be an important element to experience and learn from, sometimes, I think it is better to look to the greater good. The newly diagnosed, the extreme circumstances, the lost and the lonely. They are the ones that need this community. They are the ones that will benefit. They are the ones that will go on to help others. But have you ever heard the term, ‘you can’t get there from here’? That is how I feel. I am conflicted in responding because I care about those people. I do not want them to skip my posts because I show an ugly side. I do not want them to turn a deaf ear when I could have valuable information or insight to share. Sounds egotistical? Probably because it is. I have put myself out there many times and feeling so vulnerable can not be in vain. That is unacceptable to me.

My intent here is not to stir the pot. I do not want excuses, reasons or to rehash what is right or wrong. I want to encourage, I want to inspire. I want to learn.

What have I learned? I have learned that people will come and go in my life. I can accept that but don’t have to like it. I have learned that no matter how I feel about strife, I can not stop it, change it, or redirect it. I have learned that I don’t have to fight everyone’s battles for them but allow them do what is best for them. I have learned that change isn’t always good. I have learned that resiliency is about the only thing I can encourage.

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Side Effect Reprieve

1st chemo visitI never tolerated pharmaceuticals well, not even the simplest over the counter types. It kept me away from being a pill taker and led me in the direction of ‘natural medicines’.

But, since I began meds for sarcoidosis, I have a great track record for getting most of the side effects of most of those meds.

I am meticulous about researching every med that is prescribed. Being an informed patient is important to me.Why than, am I always surprised when my body gets hijacked by a side effect? I suppose trying to keep a positive attitude that this will be the ‘magic’ med, only thinking of the good that might come of it and burying the bad.

The thing with meds is, you don’t know until you know. There is no prediction, no safeguarding, and no way to prevent your body not tolerating the med. There may be ways to mitigate after the fact, such as, lowering dosage, discontinuing use, assigning another med for a med, or bite a stick and tough it out. In my personal opinion, all these options suck.

You can imagine after years of getting bad side effects, a person could grow a bit cynical and self protective, maybe even hyper sensitive. So I was pleasantly surprised when, it appears, the universe has given me a break on my Cytoxan experience. It is week 2-3 after my first Cytoxan infusion and I haven’t had any discerning side effects.

Nausea is very mild, no mitigating drugs needed. Pain has been worse on some days but nothing a seasoned sarkie can’t handle. Quite a few of the side effects of Cytoxan are also sarc symptoms so hard to tell, really. Hair thinning but no excessive loss. No bladder or kidney issues at this point and lab work looks like it should.

Hard to believe I am tolerating the most toxic drug I have ever taken, but, I will take this gift and appreciate my reprieve for as long as it lasts.

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The Wheels of Sarcoid Go Round and Round

PURPLE BUSJust like the wheels on the bus go round and round, so does the grind of health insurance, pre-authorizations, prescriptions, follow-ups, etc… I have spent two months trying to get approved for a medication called Humira that has had some success with treating Sarcoidosis. The end result, after many phone calls, written statements from my Rheumy and myself, copies of case studies and a 30 day appeals process, DENIED. The reason given, Humira is not on the FDA approved list for Sarcoidosis. Seems to me that looking up the list in the first place instead of wasting precious time might have made the wheels turn a little faster.

Ironically the back-up plan was a chemotherapy drug called Cytoxan that does not require any pre-auth. It has greater side effects than Humira and I am almost sure that it is more costly. I was given the go ahead in a 3 day time frame and scheduled for next Wednesday for my first infusion.

I have had a few months to prepare myself for it but still feel some intense trepidation. I honestly don’t know how cancer patients process it. I have been through 6 years of this sucky unknown disease, ups and downs that most people can’t dream of, and more medicine than I want to think about. Why does this next step scare the crap out of me?

I haven’t quite figured it out. Maybe it is not knowing how my body will react to extreme poison. It’s not like I haven’t had nearly every side effect from every new drug I have taken. Been there, done that, too poor to buy the shirt. I know the reality of chronic illness, pain, doubt, hope, defeat, anticipation, having been run over by the wheels on the bus as they are going round and round. My brain tells me it couldn’t be any worse than anything I have already been through.

My heart is singing a different tune. Maybe, just maybe, I am afraid of failure. Maybe this won’t help me and my life will not change for the better. Maybe it will make me sicker. Maybe this will be the last option for treatment. Maybe my doctors will take their balls and go home. Maybe, just maybe, I am taking this too personally. Over achievers for the win.

Given the current climate of the health insurance industry, I am grateful for the opportunity for treatment. I am always amazed at the consideration of the health care professionals that I have, even when they don’t understand my disease. Not that I haven’t had my share of frustrating quackadoodles throughout these years, but they don’t last long with me. I learned early in life not to take things lying down, ironically.

So, I suppose it is time to put on my big girl panties and jump on that bus. Beep, Beep, Beep.

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Ur In Trouble

Urine Sample

 

I hate peeing in a cup.

Razors are no longer my friend and quite honestly, being ‘natural’ just makes the damn urine stream all kinds of crazy. Too much information? Too bad. It’s one of the few times I wish I had a penis.

It’s not that the instructions aren’t clear. Wipe/pee a little/stick the tiniest cup they can find near your hooha/pee some more and hope you hit your target. Mostly you don’t, and, most women, myself included, do not find the feeling of warm pee on our hands to be an enjoyable experience.

For some reason, no matter how many times I wash my hands after, I am still grossed out for a while.

And what’s with only giving you one antiseptic wipe? It usually is a woman handing it to me. When I ask for another, why do they have to look at me like I am wasting precious hospital resources. So much for vaginal sisterhood.

Also, why is it so much anxiety to determine how much urine is actually needed. Do I roll the dice, tempt the fates, rebel and only give them the bare minimum? Or, do I exhibit my misguided, overachiever side and fill it to the brim? Wayyy too much analyzing and stress for my fragile psyche.

Remember when they used to have the pass thru in the bathroom, a little cupboard you could just slide your cup into? Shutting the small door thinking, “good, the world doesn’t really want to see the color and clarity of my sample”. Well, that homey touch is gone.

Now, you have to walk around with your warm lil’cup’o’pee in hand, trying to find the obscure little box in which to put it. Here’s a hint: It’s behind the group of people waiting to get their blood drawn and shouting ‘EXCUSE ME, BODY FLUIDS COMING THROUGH’ surprisingly does NOT make them move any faster.

I suppose I just wish that urine collection could step into the 21st century. I also suppose I should be grateful for all medical tests, no matter how inconvenient.

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There’s More Than One Way To Skin A Cat

cat kitty

Whoa, what does that even mean?

I can tell you what it means to me. It means sitting in a rolling chair in the middle of the room and using several straight attachments to vacuum my floor. It means cooking a meal in 5 minute intervals. It means allowing more time for the simplest task, a lot more time. It means mostly sitting in the shower to get clean. Quite simply, it means finding different ways to do things that used to come so easily.

Skinning a cat, it seems, would be a fairly challenging task. Such is my life. And, if there is more than one way, then those options need to be explored. No sense sitting around telling myself I can’t do it. Grab that kitty by the tail and get to work.

In my circles of chronic illness, people call it ‘finding a new normal’. I never really like that term, even though it describes it accurately. Maybe it’s my distaste for all things trendy. Maybe I prefer the ol’ timer proverbs of my parents generation. Maybe the irreverence of skinning a cat is just too twisted to pass up. I do appreciate a bit of sick humor.

Regardless of how that became an expression, I can honestly say I have applied it, figuratively not literally, and have found many new ways to skin a cat.

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Go Ahead. Judge Me.

JUDGE : form an opinion or conclusion about.
synonyms: form the opinion, concludedecide;

regard as, look on as, take to be, rate as, class as;
informal: reckonfigure

You hear people say it, “Don’t judge me”. The reality is, we all judge others. It is only human, based on personality, upbringing, environment, belief systems, experiences. Most people will never transcend to the level of zero judgement. I’m sure there are some who believe they are so enlightened and prophetic that they are above a common humanoid trait. I would probably be judging them while they think they are not passing judgment on me. No one likes to know they are being judged but are naive to think it’s not going on everyday, all the time.

If we didn’t care how others judged us, we wouldn’t be bound by what would be considered material objects like cars, jewelry, homes and even electronics. The 35 billion dollar cosmetic industry would be in chapter 11. Don’t even get me started on elective surgery, you know what kind I mean. Some people would not wait in line for hours to get into the ‘hottest nightclubs’. Every overweight person would have no problem walking down the beach in a bikini. Brilliant kids wouldn’t hide in the bathroom because they can do trigonometry in their sleep but can’t throw a football.

There is a definition for ‘judge’, but there is no definition for how to get there. It doesn’t say HOW to form an opinion or conclusion. It doesn’t say consider all the facts then judge. It doesn’t say take into account why, who, what, where and when. Judging is a knee jerk reaction. That’s why people don’t want to be judged. It seems pretty arrogant, self-serving and ignorant.

It would serve society better if we could gather the information, process it than ‘reckon or figure’ whether or not that person gets our judgment. If that is the standard than I say go ahead, judge me. See me, hear me, know me and judge away. Because even if you deem me lazy, faking, melodramatic or just plain nuts, you will be walking away with knowledge of this sucky disease called sarcoidosis. You will have a greater understanding of chronic illness. You are entitled to judge me after you hear my circumstances and the hourly, daily, monthly, yearly effect they have on me.

I say bring it on…

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Reformed Conscientious Pill Objector

medicine sarcoidosis

A ‘few’ of my meds.

I used to hate medicine. The threshold for taking even an aspirin had to be nothing short of mind-blowing pain, which in my case, was hardly ever. I did not have a medicine cabinet full of OTC medicine. I went to a naturopath and, if needed, took homeopathic medicine.

You know the old saying, ‘never say never’? Well that was a lesson learned the hard way. When I became ill, I was not eased into pill taking. I was not given a choice. Sarcoidosis was the master and I was just the unwitting victim. Sarcoidosis hit me so hard and so fast, literally overnight. I was fine the day before and woke up sick, sick, sick. When the docs starting finding all that was wrong and copious amounts of meds were required to save my eyesight and other organs, I honestly did not object. I couldn’t, I was too weak, in too much pain and completely confused about what was happening to my mind and body.

There were so many meds with different dosages, multiple times a day, some weekly, that it was difficult to manage. I had to get into a routine like no other routine I could possibly imagine. Some days it was hard to remember if I had taken a dose. I would try daily pill boxes but that would confuse me. I decided to write it down when I took it and that seemed to work for me. The shoe box on the counter filled with pill bottles became a permanent fixture. It was brought to the table with every meal like it was part of the family.

The first couple of years with sarcoidosis was spent switching drugs, lowering and raising dosages, adding more meds, because nothing seemed to work,  making it harder to keep a routine going. I miss those days. Strange statement? Probably. But, in addition to continually feeling like crap, I also had great hope that the next new med would bring relief. You see, sarcoidosis does not have an endless amount of treatment options and I was blowing right through most of the standard ones. As the years went on, alternatives became scarce.

I became a chronic patient. For the last year or two, the pill regimens have stayed the same for longer periods of time. I have become accustomed to taking the same ones day after day. Autopilot pill taker. I am not getting any better and in some cases have gotten worse, but, I’m not dead, yet. One would think after such a time that symptoms would improve and/or stay the same. One would be wrong. As a chronically ill person, I have had too many ‘new’ symptoms to count. It’s an unfortunate reality that some sarcoidosis symptoms are eerily similar to the side effects of the very drugs used to treat it. The worst part is leaving the doctors shaking their heads with the inability to properly treat this sucky disease.

Now, as I appeal to the insurance company for approval of Humira, I once again find myself wishing to be the holder of the winning lottery ticket of medicine. My options are running out. Maybe this will be the med that will allow me to live a life like the others I watch around me. I had almost no hesitation when my rheumy suggested it. I suppose my hatred of pills has faded as I face another challenge to regain my health.

Why? Because I am partial to keeping my organs, I still have hope for a cure, and LIFE is precious.

So I take out my shoe box twice a day. I count out my pills into a ramekin. I swallow the big ones first, one by one. Then pour the little ones into my hand, and in one last gulp, the deed is done. It is always followed with me saying in my head, ‘fire in the hole’. Sometimes, that is how it feels. I am at war with sarcoidosis and the pills are my arsenal. I have become a reformed conscientious pill objector.

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