(I updated this again on 12/31/08)
I thought I'd start this post to share thoughts on how we (I) live with progressive sarc, the kind most of us have here in our support community, many of you can relate. The old timers, or most of them, have already figured out how to live with sarc, I’m sure everyone has different ideas. I asked myself, what would I tell people who ask me, “how do you live with progressive sarc?” What would you say?
WORRY/FRET.... I choose NOT to, regardless if the day is good or bad. Scripture says worrying doesn't accomplish anything, so I just don't do it. (I used to yrs ago) Live or die, I take what I have and work with it. When I see a video of a 3rd world disabled poor person in some foreign land, dragging him/herself across the ground to get food or water, I'm reminded they do not have the luxury of worrying. As an American ...what in the hell do I have to really worry about? Money? Material things?
HOPE .... One time in my life I felt I lost all hope, it was the darkest time I've ever known. Now my hope is solidly grounded in my faith. (Christian) Hope is an area I foster, I take care of it, I push out anything that try's to destroy my hope, I've learned I "need" hope in my life, with hope I will climb, walk, crawl, to get where I need to go. Like many here, I have hope in one day I'll be free of sarc, I have hope that my family will always be there for me, .... always I will hope. I foster hope with encouragement from scriptures, with Christian music and worship songs (radio is on 24hrs most all of the day at my house), from prayer and from close family.
WHEN TO CALL THE DR .... well this is sometimes difficult, we each have to know our own limits, we have to be sensitive to our own body, without belly aching about every little thing. I read up on the drugs I get prescribed, some things are non-serious effects of the drug, I'll consider what might be going on, if its out of the ordinary I place a call into my Dr. 1st I write down what the new symptoms are that way when I speak to the nurse or, nearly always the voice recorder, I plainly and clearly convey the concern. I also include what drugs I'm taking if any. If I start to go further down hill (its happened 3x in the last 3yrs) I go to the Urgent Care.
OVERWHELMED DAYS.... sarc and what ever else has taken over my body, there is nothing or very little left. On these days I "REST". I drink fluids, read, take naps, I eat. The focus is not on work or other person, its just on giving my body some time to heal. What is an overwhelmed day …. It’ll be different for each of us, but I’d describe it like this …. I’m wearing a 100 packsack, walking up a steep grade, in 2 ft of snow at a high altitude (taking my breath away), I’ve “hit the wall”. When I hit the wall on these kinds of days, I stop and rest. Sometimes I’ll email or call an old friend or family member, I do not discuss how I feel, I’m trying to get my mind off of that. I want to know about them, we’ll talk and joke.
STRUGGLE DAYS …. This is the majority of my days as a sarc’ee, it’s a struggle, but I am able to function to a given degree. My strength may be anywhere from 30-70%, my endurance will also be from 30-70%. (I’ve not had very many days above 70% since getting progressive sarc) These days I make sure to roll out of bed, to start doing something out of the gate like I used to, but to a lesser degree. I begin everyday with reading and prayer, I then check my email and go about the days activity. Some days I’m not able to go the whole day. I sleep good about ½ the nights of the week, the other nights I get little sleep. I’ll take a sleep aid 1-3 times a week, I know that lack of sleep makes us all feel poorly with or without sarc. Sleep is important. I do not let sarc hold me back without a fight. I work with whatever I have each day, I get up and use it. I find that when I move I actually gain ground rather than give up ground to sarc. Work/activity helps to keep my mind off from sarc. We must have things to do in every day, activities or work. Its important for me not to give in, I hate sarc, I fight sarc, I’m not going down without a fight. A “struggle day” is like wearing a 30-60lb packsack, and walking up a hill … still very doable, while all together tiring.
GOOD DAYS …. While they are fewer, I do have them, I wish I could figure out what triggers give me these good days so I could have more of them. I make the best of them by doing fun things with family or friends. At best I’m only at 70% of what I used to be, but that means I’ve got 70% to work with. I know sarc is a downer for me, so I try to really enjoy the good days with my family so sarc is not a downer for them all the time. Its hard sometimes to live above ourselves, yet it’s something our grandparents and those before them had to do. I’d like to be known for living above the sarc when I finally do go. Ever see the cartoon with the frog in the birds mouth, the bird is trying to swallow the frog, but the frog has his front hands outside the mouth of the bird and is reaching around and squeezing/choking the throat of the bird! (it thus can not swallow the frog) Like the frog, we can not let sarc swallow us.
PAIN GAUGE …. I’ll be frank, many people I know are whiners. They like attention for being sick, when they don’t get it, they exaggerate what’s going on trying to get more attention. If a doctor tells them they “might” have something new, they can not wait to tell others, almost like they are glad to have it. They get a cut, and want the whole world to know. I frankly dislike whiners. Once I cut all the way thru the upper thigh just to the bone with a chain saw, I walked out of the woods with my chain saw, self dressed the wound, (7” across my upper leg) and drove 40 min to the ER. I could have called 911, but I knew I hadn’t cut a major artery. I didn’t take anything for pain when they cut my nuts, I told the doc, “I want to feel what you’re cutting down there”. But I’ve also been on the ground rolling in pain, I’ve had pain so bad it wouldn’t let me get up off the floor. One time I spent an hour trying to get up off the floor. I was sweating and exhausted from trying to get up, but the pain was too intense. The scariest pain I’ve ever felt …. It was when my little daughter was in pain I didn’t know what was wrong, I felt totally helpless.
So everyone has a pain level, so what is a 10? A level 10 pain has me doubled over, on the ground or otherwise I do not have the ability to function. I can’t carry on a conversation, its ER time.(911 or have someone drive me in but I’ve never called 911) Being kicked in the groin is at this level.
At level 8-9, I hurt, its intense, my concentration is not good, I shouldn’t operate equipment or drive a car, but I can converse with people. I’m skipping any regular activity I might normally do including eating or drinking much at all. Knowing me, I’ll drive into the Urgent Care. I let my wife know about the pain just in case something turns quickly for the worse.
A level 6-7, I’m able to do most things, I’ll drive, I’ll converse, I’ll take aspirin, or Tylenol, or Ibuprophen to knock it down. Some of the bone/joint pains are at this level. Hitting my finger with a hammer is at this level, the chain saw accident above was at this level. I’ll consider working thru it (lots of stuff just goes away) and see how the day progresses.
At level 4-5, I’m annoyed by the pain, its not stopping me from doing what I need to do. Much of the sarc pains fit into this level. The chest pains come and go, they do not debilitate me, they are annoying. The bone/joint/muscle pains go in and out of this level. Sometimes I take OTC pain pills, mostly I do not.
At level 2-3, I’m aware of the pain, but it doesn’t direct me from anything I choose to do. Again, lots of the sarc related pains are in this area. Hey, I’m getting older, I been prep’d by my elders, stuff just hurts more than it used to. Pain is not our enemy it’s our friend. If we wisely listen to pains they’ll tell us about stuff that is going on. Some pains we should ignore, others are giving us a warning sign before something bigger is going to hit. We need to know our own bodies.
KEEP MY RECORDS …. I preach this message to everyone with a serious disease. No one is going to care more about you, than you. If we keep our medical records, if we look thru them, if we do the research, we will be better able to ask good questions to our Dr’s. Also, putting all of our tests into spreadsheets lets us see trends the Dr’s might miss. If sarc is going to take away a chunk of my life, I’m going to learn about it, how it affects me, and help those who are trying to help me.
MY FAITH …. for me, Christian faith, I can’t tell you how much that means to me, its everything. In my old life, I was a bad ass, my slang name was “mad dog”. Every other word was a cuss word, I lived for myself, but I was empty. Only after I came broken and repentant to Jesus Christ did I begin to feel fulfilled. I’m not talking about the “half ass just go to church” conversions that most people have, I’m talking about the; “tell I die, I’m going to try to live for God” kinda conversion. The kind of conversion that says, I’m a mess, I’ve got to change me, not everyone around me. Oh yes, I still have crap in my life, things I’m still working out, things I’m not proud of, but I came to know a God who accepts me just the way I am, but He helps me change to be better. I do not fear death, I have compassion I never had before. It’s very comforting to know, this life is not what it’s all about, the next one is going to be over the top.
PLANNING THINGS …. I’ve never been much of a planner in my personal life, preferring the spontaneous approach. I do get concerned now that I may not be functioning at a level that allows me to contribute much, so I try to make the best of each day. I got progressive sarc after my wife and I had set up a 25th aniv. trip to Maui, I felt like crap leading up to the trip, I told my Dr I was going to cancel as I thought it would be a waste of $$. He recommended otherwise, and told me to go. I did, I had a great time and we have memories we wouldn’t have today if I had not gone. Was our trip impacted by sarc? Oh yea, my wife had to eat alone a couple of nights as I just couldn’t and some afternoons I jus stayed in the room. So, I still plan things, less of them and with more hesitation than before. I do not take on anymore debt for fear I may not be able to pay it off. I have made a real effort to get my affairs in order, also getting my will up to date. I know this, when I go, I’m going standing up! My wife’s grandpa died while taking a walk with a friend … wow, what a way to go. I’d like to go during worship at church, I’ll just move from praising God down here to praising God in heaven. A quick massive heart attack or 12 extra months slowly dying in bed, that’s no choice to me. If I can breathe, I’ll be moving, if that movement kills me, great, it must have been my time to go.
FIND A GOOD DOCTOR …. Then stick with him/her. Doctors are no different than any other profession; there is a bell curve to their experience and knowledge. Most doctors are average, a few are really bad, a few are really good. With sarc, you need to get with Dr’s who are above average. Sarc presents to many symptoms related to multi organ involvement for the average Dr. I inject that any doctor who really cares, will find the causes, but alas, many don’t really care, its just a job. I’d guess that perhaps 50% or more of those in the Inspire sarc community were not diagnosed properly and had to go elsewhere to get proper treatment. I’d also venture to say, 90% of those of us with progressive sarc still do not know all the organs that have been affected, and yet we have many other symptoms that have not been addressed. We likely won’t be fully diagnosed until that organ begins to fail us in some greater way. Some Dr’s (like mine) believe the best use of time and $$ is to begin treatment and watch the organ that is known to be affected. If it gets better, the others are supposed to get better as well. This approach does make some sense.
BALANCE …. Everything in moderation, sleep, food, work, rest, etc. Don’t get consumed by anything; do not let compulsions drive you. If anything seems to push me, I push back. I’m not going to drink away my sorrows, but I will have a beer with my meal. If I’m barely moving, I’m also not going to eat much so I do not turn into a blimp.
RELATIONSHIPS … I learn more everyday to foster them. I used to start fights, now I seek to end them quickly, when my wife and I hit a snag, we will join together and pray asking God and each other for forgiveness. We do not let anger win, bitterness is not allowed to damage our relationships. Love can conquer all, forgive, forget, why hang on to it? In spite of sarc, plan for family stuff, plan to do things with friends, if you end up not being able to, fine, cancel, but try. Don’t become a sarc hermit.
PREPARATION & SIMPLICITY… I read a book many, many years ago. It told the story of people who lived a simpler life, they didn’t extend themselves and they laid up food like the generations before us. Then when sickness or famine came, they were prepared. Do I need a new truck … no I don’t, I’ll just fix the old one to keep it reliable. Do I need a boat? No! A new TV? Nope, I really do not need anything that I have to borrow money for (except a home). When anyone gets a serious disease they should "simplify" portions of their life. The management and issues around the disease will take up larger portions of any month, so cutting back to more of the basics will prevent frustrations and disappointments. I think everyone should have several months of food laid up. A dozen or so of our governments own websites are telling Americans to have emergency preparedness plans. Our grandparents and all the generations before them always had food stored up for unexpected emergencies.
WHAT ABOUT DISABILITY …. SSDI or SSI I’ve not filed, but think about it once a month or so, mostly on the bad days. The whole idea of having the tag name “disabled” is not what I’m about. And I’m dam sure not going to steal money from tax payers by taking it and not really deserving it. Yet, progressive sarc falls somewhere between the lines for most of us. We can actually function fairly well (30-70% of norm) much of the time, but we get kicked down by sarc so very often too. No employer wants a person that they can’t depend to be there 5 days a week, 8 hours a day. I might be able to split some wood for a couple of hours one day and not be able to roll out of bed a few days later. Hey, when we can’t work we need some money. If you’ve tried filing and you have sarc, you already know that sarc alone is not enough to qualify for disability. Your bodily functions have to degrade to a point that you can not work.
The stats are that apx 60-70% of sarc cases clear up on their own. (not anyone in this group as we wouldn't be here unless sarc was active)
Of the 30-40% that is left, about 7 of 10 of those will respond favorable to some form of treatment and or the sarc will go into remission after 2 years or so. So that means statistically only about 9 sarc people in 100 are not responding well enough to treatment and thus impacted severely enough so as not to be able to work. This is closely matched with the sarc death rate that claims about 5-10 in a hundred people will die related to the complications of sarc.
I guess this is up to each of us, my pride says “no”, until there are no other option left. For workers who truly deserve it, who have worked for it, it infuriates me when the system doesn’t help them asap, that’s what it is there for. However, not much makes me more upset than to be made aware of a person stealing from the disability system when others who really deserve it are doing with less. If I file, I’ll be honest, and I’ll do what I honestly feel I needed to do and my Dr will be in agreement.
DEPRESSION .... I've passed thru this dark cold tunnel filled with fear and uncertainty, but sarc is a disease that can easily steer us back to into it, many sarc'ees suffer from it. Despair, feeling overwhelmed, the fear of thinking we are really crazy and nothing can fix us, the emptiness, the feelings of being all alone. It seems like the weight we are expected to carry is far too much to bear, we climb one mountain only see a dozen more in front of us. Life goes on around us, in color, we see but it’s like we are in another world that’s black and white. Its like we are trapped on the other side of a thick dark glass wall, we want to be on the other side, but there seems no way to get back. We see others happy and functioning, but we are not certain we will even make it thru the day. They do not seem to understand, and we cannot explain what’s wrong because we do not know ourselves, it seems like a heavy darkness has settled upon us. Hope ... we're not sure were to find it we are convinced nothing can help us, we are now “to far gone”. Before I had personally experienced depression, I used to say, “its all in their head, they just need to snap out of it”, I know better now, depression is a monster that surrounds us and seeks to crush us, if ever so slowly. For a man, if we can’t provide for our family, we truly feel worthless. I’m sure a mother feels the same way when she can not take care of her family. The word “failure” grips us and drags us down deeper. Like we are drowning but get just enough air to stay alive, we long for the “last breath” so it will be over.
If you are depressed or suffered from depression, you know my descriptions are right on. So here is the 1st bite of hope I want you to have. I’m out of it, many, many, other are also out of it, you will be free of it too. We know what you’re going thru, its real, and your not alone. Lets walk together.
So what does a sarc'ee do about depression? Now on the other side, the best defense is a good offense. As I mentioned in the topics above (no more “worry/fretting”, foster “hope”, “faith,” “balance”, “relationships” …. all of these are keys to keeping depression at bay. Becoming a sarc hermit is the easy road, participating in life is hard, but participating is what will keep us out of the cold dark tunnel. Now on the other side of depression, I say “bullcrap”, I’m not going down that road again, I’m going to beat it down by doing the things mentioned above.
What about if you’re in the dark tunnel now, how do you get out? I want to suggest a few things that got me out, perhaps others have suggestions. 1st I went to the doctor, if something was physically wrong with me that was causing the depression, I wanted to get that out of the way and then I’d hopefully be better. Thyroid issues, chemical or environmental toxins, brain chemistry imbalances, etc can all bring on depression in addition to worry and stress. In my case they prescribed a “chemical imbalance drug” thinking that was the problem. I didn’t like the way I felt so I stopped taking it. (other people I know it works great for!) I found a book that talked about “adrenalin and stress”, it helped me tremendously. From that book I learned I was running on adrenalin all the time, coming off from it, was a huge downer, as I had been running on it for many years. I would unknowingly make my adrenalin flow just on perceptions (not even actual needs) something was going on, so my body was always in “flight or fight mode”. My wife went into intercessory prayer for me one night; she sought God and rebuked evil stuff. She said she saw it lift, and I woke the next day unaware of her prayers and my road to emotional wellness began with a jump start. My story is perhaps unique, but its one of many. If you are in the dark tunnel, be assured, your normal, it won’t last, you will get out. This is were we start to foster the hope, once the flicker of light in hope begins to shine light in the tunnel, our day of deliverance from depression will indeed come. Your “normal”, you “WILL” get better.
PREDNISONE SIDE EFFECTS -- I had forgot about it until I read another post (and many replies) from another sarc'ee about the occasional and seemingly uncontrollable fits of anger/rage that come from taking the steroid “prednisone”. While this drug comes with many side effects and is described as a “poison and toxic” by my Dr., it is medicine's 1st line of defense for treating sarc. The side effect I hate most is the "spontaneous” fits of rage. I very rarely experienced this until I started taking pred. I’d like to say it leaves after stopping pred, but this still lingers even when I’m off pred.
It’s not an everyday thing with me, more like 2x a month. (I’m at a stable part of my life and thus experience less life stresses)
There are long term side effects associated with the pred in some regions of our brains just like it causes long term side effects with bone loss and fat redistribution, not to mention the short term side effects we have while on the drug. I described it to my Dr as now having a “very short fuse” over some things. There is no rime or reason to what triggers it, sometimes its very stupid things. While I’d be the first to say, “there is no excuses for fits of rage, buck up and get over it”, I know that pred gets control of me in this area and I seem to lose control. I thank God for an understanding family. They know me ... at least the old me. For the people who do not know me but experience the pred rage, I can only apologize to them when I calm down. I hate this area of my pred life, it saddens me terribly. (sigh)
PRIORITIES ..... what matters most? Make a short list, work on the top things, review the list and continue to work on the top things. Effective business people (CEO's) practice this, it is no excuse for not doing the little things, but its a way to make sure the things that should be taken care of are taken care of. You'll really have 2 lists, the "health" list we take for granted until something stops but its worth mentioning ....
Health list (top 5 things)
Breathing is the highest priority, followed by drinking liquids, then food, bowel movements, then perhaps sleep. We take all this for granted until we have trouble with it, then we start paying attention to it.
How is my second list structured? (top 5 things)
#1 faith, I make sure I foster my relationship with God. If I keep this in the number one slot, things go much better for me. Reading the word, prayer, worship music are all very much a part of my daily life.
#2 my wife, I have to work on this, I can't take my spouse for granted, I need to foster our relationship like we did when we were dating, I want her to be "in love" all the time, so it requires I spend time in her world. I adore-cherish my woman, but I must work at letting her know that.
#3 my child was in this slot, but she's been out of the house now for 6 yrs. Straight up, I didn't do well in keeping my daughter in the #3 spot. I put work in that spot ..... and tried to justify that I needed to to provide the best home I could for my family. I was wrong, spending time "EVERY DAY" is required. Please learn from my mistake, don't be the 2 min dad who spends 2 min a day on average interacting with their kids, be a 1 hour dad.
What comes (#4 and beyond) next changes around a lot but are things like, .... other relationships, friends, work, reading/learning, recreation, relaxation, service civic/church, keeping the house up, etc.
And finally …. My favorite section
HOW TO FEEL INSTANTLY BETTER …. I do these things many times a day. I make someone smile or laugh, when I hear them laugh or smile, I feel better. I give something to someone, again, I feel instantly better. When I encourage someone, I feel instantly better. When I eat chocolate, I feel better. When I listen to worship music I feel better. When I have sex, I feel better. When I have a cup of Pumpkin Spice coffee, I feel better. Watching “Extreme makeover, home edition” makes me feel better. (even though I might be caught crying at the end) I’ve learned some little things that can lift me up, they don’t cost me anything and they work every time.
Others, please chime in. Perhaps share this list with loved ones to help them get an understanding of what having (living with) sarcoidosis is like. But then you must “live-up” to living with sarc, don’t buckle under it.
Let your loved ones probe you and challenge you to live better. They may say, “I do not see you living up to this or this”. We must accept correction and instruction from those who love us, so lets give them the door and opportunity to “tell us like it is” and not lose our love for them. Truth above all, it may hurt, but it may also make us better and being better is what we want.
Hamles2
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