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kidneyadvocate · 6 years ago

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Chronic Pain Sufferers Should Win Emmys

Warning, there will be times this is too much information for some.

I could never wish pain and suffering on another person, but there are days where I wish people that don’t understand chronic pain could feel what I go though in a day, what my husband goes through, what all people with chronic pain and/or chronic illness go through. For those that understand, thank you. For those that understand without having to have experienced something similar, double thank you; you probably helped a loved one through chronic pain, or work in health care. Kudos.

Well to do, healthy people, make comments that to the ears of someone in pain almost every day, or every step of every day, sound absolutely asinine. One of the worst is, “But you look great, why are you complaining?”

Why thank you, yes we do look great! Because we feel obligated to put on a show to protect the feelings of everyone not suffering from our pain. We put on a show to get through work everyday. We put on a show for our friends, even our families. We may be a little more relaxed to those closest to us, and sometimes the kids or our parents can see how very real it is. But we will do our best to comfort them too.

Behind my husband’s smile, that I find quite attractive, is chronic kidney disease and dialysis on top of other aches and pains associated with being a steel worker and putting in extensive hours.

Some of the first signs of kidney failure don’t cause pain, and can be hardly noticeable. Ammonia breath, mild low back pain, foamy bubbles in the toilet after you pee. You can get as low as 19 percent total kidney function before you have a single symptom. As that function gets lower the pain starts, the back pain increases, the restless legs start, and then the leg cramps start waking you out of your sleep multiple times a night. Cramps that have you walking and stretching sometimes for hours, and sometimes to no relief. Oh, and the headaches. Sometimes high blood pressure causes kidneys to fail, and sometimes kidney failure causes high blood pressure. It kind of goes hand in hand. With the high blood pressure comes the headaches that can make migraine pain seem week. But no one can see a leg cramp, no one can see a headache. It doesn’t require a cast and leaves no scars. Later stages of chronic kidney failure, also called end stage renal disease, can be as terminal as cancer yet it doesn’t have near the awareness.

“But you can go on dialysis, right?” Yes, you can. I will save most of why my eyes roll at that statement for another day’s rant. I will just talk about the pain associated with it. Dialysis tries to do what healthy kidneys do in a fraction of the time. My husband is on in facility hemo dialysis, so that will be my example (there are 3 options, all with different reasons to be unfavorable). A body with healthy kidneys has 168 hours of cleaning in a week, kidneys never sleep. A hemo dialysis patient’s body has to go through the same amount of cleaning in an average of 12 hours. But hemo only cleans the blood, not the organs. So they still do not come out in the same shape as the healthy person standing next to them, and feel as though they just ran the Boston Marathon, but are often expected to perform as that healthy person does. The pain this creates knocks the previous 10 out of the park, on the scale of 1 to 10 (10 being worst). It gives a whole new meaning to the concept of leg cramps. Have you ever had a charlie horse? Okay, now have one in every single toe, then your calf, and how about your right thumb. No, you can’t stand up and walk it off, because you are cabled/tubed to a machine and you might pass out if you try, because of how fast all of your blood is being taken from and put back in you. So that’s over, it’s a new day, your off day (from dialysis), this should be a good night. Not so much. Yesterday while on dialysis your phosphorus was low (because for the safety of your other organs this is one of the nutrients necessary to be low). Since your phosphorus wasn’t within a normal range, the dialysis also caused your calcium to be sucked out of your bones. Poof, have some joint pain in your hips and knees... But no, you don’t need prescription pain meds for this because you are young and no one wants you to be addicted. Now, smile for the rest of the world and keep up with the healthy person telling you that you look great.

Oh, and there are over 100,000 people in America on dialysis desperately hoping to receive a kidney transplant, so the smile no longer has to be an act for them too. Not to mention those on dialysis that don’t qualify for a transplant. Yeah, that is a thing.

So that was how my husband’s days go... I have stopped replying, “Okay,” to the questions from concerned people as to how he is. I am slightly more truthful. I have started using phrases like, “The same,” and “Hanging in there.” Followed by, “Until we get a kidney he will stay the same, or get worse, there is no getting better from here without one. Thank you for your concern.” What I often don’t say is were it not for dialysis I would be a widow within two weeks. But we will still smile for everyone else’s comfort... Now lets move on to my pain.

I am diabetic, have irritable bowel syndrome, and have chronic cluster migraines. The diabetes and the irritable bowel syndrome aggravate each other regularly. Because things with carbs are what helps the IBS, and what makes the diabetes worse. So I have to choose between having stomach cramps, or potentially destroying my pancreas and kidneys amongst other/worse unfavorable consequences... The diabetes generally doesn’t hurt (me), I don’t have neuropathy yet and am use to the needles.

So lets talk about the stomach cramps. I have to know where a toilet is at all times, because sometimes I have about two minutes to get to one. I usually have warning on days that will be like that, so I know when not to travel. Yes this could be a last minute decision that I feel horrible about cancelling on you for. Sorry. Warning is a weird rumbly sick feeling for a few hours prior. So the two minute notice arrives, and I am not within two minutes of relief. So I have to hold it. Holding it results in horrid pain. I will have cramps, followed by contractions that start in the back. But these contractions don’t come with a beautiful reward like birth does. Yes, they are as painful, and I do qualify to speak for the good kind. So I make it to the bathroom, but now I have to wait for the contractions to stop to be able to ‘go.’ But the anxiety is in full swing, so the contractions keep coming. If I find something to read I can calm myself some, it helps this process... Now I will bounce between relief and contractions for a while. Then it will be safe for roughly 20 minutes until the next bout. This will go on for anywhere between one hour to four, occasionally a day. Then I can function a little better.

But that’s not all, there are days/weeks/months where it is the opposite. And not just your normal constipation. Look up fecal impaction if you like, I will spare you most of the details. Will just leave it at: it requires gloves, and mine has never gone past my rectum.

Which by the way, I am sooooo very sorry that my discomfort and pain taking too long in the bathroom is a problem for YOU, thanks for being concerned. Ha.

So yes, I know counting carbs and watching the diabetes is more important, but it is the least painful currently. It is very difficult to balance these, especially if you ask me to join you for dinner at Old Chicago for calzones. I have gotten better at having my boring tea and a salad while you have red wine, an appetizer, and a calzone. But there are absolutely times I reach a point that I just don’t care about counting anything.

Most people are aware what migraines are, the pain that makes you vomit, the loss of vision, the nausea, dizziness, auras, sensitivity to sound/light/scent, etc. So we will brush past that, though they are truly horrible and crippling; yet not visible. Mine are a result of a head trauma at age 12, leaving me deaf in one ear and with no vestibular activity in the same ear. Make your kids wear bike helmets.

But all of this is noting at all compared to my spine and joints. In which my current non-diagnosis is a toss between, “You are just unlucky,” “It could be because your father was exposed to agent orange in Vietnam,” “It is probably an immune disease, you have lots of symptoms of many things, but not all the symptoms of anything, so we just have to wait and see what happens,” and my favorite, “You need to loose weight.” Because I have been loosing weight and all that has done is make the diabetes worse, cause me to need a cardiologist (oh yeah, I forgot to mention the essential tachycardia for no reason), leave me hungry all the damn time, continue degenerative issues, and increase the daily pain because it means increasing my activity. FYI, I am far from lazy; hospital/clinical phlebotomist full time, have two entrepreneurships (balloon art/children's entertainer and yarn craft/traveling vendor), volunteer day camp director, kidney advocate, on top of wife and mom to active school age children. And news flash, I am not the only fat person on the planet. Find a new excuse.

All of these non-diagnosing statements follow after viewing my MRI’s and saying, “Well this is normal wear and tear for someone twice your age that played hard their whole life.” I am 38 on the outside... The translation of twice your age is: bulging/herniated disks (one of which is in my neck and pushing against my spinal cord, and has caused the protective membrane to become very thin and has increased the migraines), torn discs, degenerated disks, spondylolisthesis (no disc left so the bones are grinding), advanced osteoarthritis, bursitis, something about sacroiliac joint arthritis and facet arthritis but I haven’t understood why it is different than all the other arthritis, and for a bonus Forestier's disease (another fancy arthritis that causes spurs on your vertebra that in turn cause calcification of your ligaments). Eventually it will most likely lead to stenosis of the main spinal cord, I already have this in other areas. None of these arthritis issues are the kind you can slow down with the help of medications by the way. Oh, and I have a congenital defect at C4/C5 where a disk just never showed up for the job because of premature birth; and my right leg is longer than the left causing my tail bone to twist around and knock my pelvis out of place, creating more bursitis. There is like a one in eight chance you have the leg thing too, you should check and get corrective shoe inserts/lifts before it hurts, if needed, please.

All this degenerative crap effects my joints too, but they just grind, pop, and occasionally give out. Knees have had ligaments replaced and repaired in the past, but that’s not a huge deal yet.

What all that means is that my muscles work twice as hard as a healthy persons just to keep me upright. So I get exhausted from the muscle fatigue and pain much faster than you, and still have the same work day. Because I am certain if I went on disability I would rot and die before my 45th birthday. I have to have a reason to get up everyday. Yes I have my spouse and our children, but they are mostly grown. I need to have a purpose to get up, and a place that relies on me to help serve others. Because despite my pain, I feel we are all given gifts/talents that are meant to be used in service to each other. So I get up, take my first daily handful of meds, and go about my day. I will probably be slower than you at some point in the day, probably hobble some, and am definitely in pain you can’t see on the outside every single step of every day.

My next treatment step is a series of three spinal epidurals to inject steroids into my spinal cord. Doesn't that sound fun? Then when that stops working, surgeries.

But, I look great, right? Suppose I am glad the pain isn’t more visible. I don’t want pity. I want fixed. I want understood in the mean time.

Remember what you just read is about two people. There are far too many people with these kind of stories, and so very many more ailments causing them. They look great too.

If you want another thing to research, look up Chiari Malformation. It is the awareness month for Chiari. I care greatly for a friend’s two amazing and normal looking teenagers that suffer this. Most likely because of their grandfather's forced exposure to agent orange... I read that stuff can have congenital defects for 5 generations, but no one will study past the first born of the first generation of offspring. What I suffer is just a portion of what persons fighting Chiari face.

Mike and I do have good days though. Some that just aren’t as bad as others, where the pain meds are actually enough. We don’t have days without pain meds, period. We will take advantage of these days to make truly good memories with our loved ones. We will also suffer even more the day after because we did. We will also smile and do our best to act as normal/healthy as possible to try and blend in, and avoid conversations that make others uncomfortable. We will push forward, and always fight, because we have to. This is the story for most people with chronic pain and chronic illness as well.

Hollywood, you are missing out on some wonderful talent. But that’s okay, I prefer working behind the scenes in health care anyways.

If you made it all the way through reading this, you deserve some ice cream.

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