Ever since the first diagnoses started rolling in, I have been the recipient of prayers. I have received prayers for healing, prayers for good test results, prayers for strength, prayers for courage, prayers for medicine that works, prayers for no side effects, prayers for answers, and prayers for relief. And yet I am not healed. I do not get good test results. I am almost always weak and afraid. The medicines, all of them, have side effects and they usually make me feel worse than the condition they are attempting to treat and there is little to no relief. Ultimately, there is really only one answer… there is no cure.

People who care, whether they care a lot or just a little, need to have something to say to people like me when we are suffering. Nothing works better for them than “I’m praying for you” or, commenting simply, “prayers”. While that may work for them, it doesn’t do much for me. Everyone is different and many people truly, desperately covet the prayers of others because they truly, desperately believe those prayers will be the instrument of their healing. I am not one of those people. For some people, the act of praying is the single most important thing anyone can do for them. I think it’s an out. It gives people the sense that they are doing something to help me when, in fact, they are not. They cannot. Prayers do not, cannot stop my immune system from producing antibodies that attack my own DNA.

Again…

Prayers do not, cannot stop my immune system from producing antibodies that attack my own DNA.

Essential oils, supplements, cannabis, special diets, meditation, yoga, a good attitude, positive vibes, hypnosis, accupuncture, and well wishes fall into the same category as prayers. While they are appreciated , they don’t actually do anything to change the disease process in my body. Want to know what does help? Disease-modifying anti-rheumatic drugs. Yes, DMARDS help. Biologics help. Anti-malarials help. Immunosuppressants help. Pain meds help. Anti-inflammatories help. Steroids help. Chemotherapy helps. I hate to tell all you anti-big pharma folks out there, but big pharma helps. But prayer? Not so much.

I can hear it now… oh, ye of little faith. Maybe I am lacking faith. Or maybe I choose to place my faith where I can see it working. In research that paves the way for new drug therapies. In medication that can alter the way the disease progresses in my body. In doctors who have been called and trained to treat these specific autoimmune diseases. In my family, who pitches in on days that I simply cannot function. Prayer can give us a spiritual lift, but it can’t change physical realities.

Don’t misunderstand me. I appeciate people caring enough about me to take precious minutes away from their own lives, problems, struggles, and busyness to pray for me. And when someone I know is requesting prayers, I stop what I am doing and I sincerely pray for them. I guess it’s something we do for one another when there’s nothing else than can be done. I just don’t think it actually changes anything, except maybe the heart of the one doing the praying. And maybe that’s the real purpose of prayer, anyway.

Not for everyone, but maybe for me… enough with the “I’m praying for you” and “prayers” comments. I know you are and I appreciate it, but it’s a little like saying, “I asked Santa to put the cure in your stocking.” It just doesn’t happen that way. Miracles? I don’t know. I can’t say I’ve had any experience with them. Maybe they happen, but as of yet, not to me. I would rather hear, “That sucks and I’m sorry you’re going through this.” I understand that many people prefer prayers, but I guess what I’m saying is that I prefer validation to prayer. It is what it is. I would rather face the reality than appeal to the mystical.

Tuesday was not bad, either. I woke up wanting to run, but knew I needed a day off in between runs. Instead, I did 17.5 miles on my recumbent bike. I did some grocery shopping and, again, had a generally nice day.

And then Wednesday happened.

Tornado-warned thunderstorms moved into our area after dark Tuesday night and at around 2:30 am Wednesday morning, my neighbor’s trampoline came crashing into my roof, going all the way through my bedroom ceiling. The wind then carried it across my yard, over my fence, between my trees, across the side street, and into my other neighbor’s house where it put a big hole in the side of her house before crashing into her fence. When the all-clear was given and the kids, dogs, and I came out of the closet, we immediately started mopping up the water that was coming in onto my brand new wood floor and I placed a large bucket under the hole to catch the rain that continued to pour into my bedroom.

When things calmed down, I sent the kids back to bed and I began the long process of notifying the insurance company, getting a disaster team to respond to temporarily patch up the hole, and evaluating what other damage the storm had done to our home. The neighbor’s trampoline did a fair share of damage, but so did the tornado-force winds, which ripped off shingles all over my roof and knocked down a section of my fence. I secured the fence as best I could by tying it to a tree, just so that I could continue to let my dogs out into the back yard.

It was a long day — one that did not include a nap or a workout — and it just about kicked my butt. I spent most of the day on the phone, trying to get the repair and claims processes underway. Sometime after lunch, I was sitting in my chair about to doze off when my phone rang again… this time, it was my son telling me he’d been in an accident. An 18-wheeler had run him off the road.

I ran to the car and drove to where he was, thankful that he was okay and very angry that the truck driver had left the scene. We waited for the police and a tow truck, which meant sitting out in the sun. This is a no-no for people with lupus on the medication I take, but I had no choice. Because the truck driver did not make actual contact with my son’s truck, he was not considered to be responsible. The cops were very nice and helpful. They were terribly empathetic. But there was nothing they or we could do. And since the truck was just a beater, we only had liability on it. Yep, my kid is out a car — his first car, a combination 18th birthday and high school graduation gift from us — through no fault of his own. It was heartbreaking.

The next day — Thursday — we signed the title over to the towing company so they could auction the truck, thereby negating our towing bill. The truck was totaled and couldn’t be repaired. We couldn’t get enough from a salvage yard to pay the towing bill. This was really the only option we had. Maybe if my husband were home we could’ve come up with some other plan, but he’s not and my son and I made the best decsion we could at the time.

I was so exhausted when I rolled into bed that night. I thought I would sleep the sleep of the dead, but the power went out at around 3:00 am and the sudden shut-down of all things electric in my home woke me up. I reported the outage, then couldn’t go back to sleep. Thus started another day with not enough rest behind me to fuel my day.

The weekend was a blur; Friday and Saturday sort of bled into one another. The neighbor got me his claim number from his insurance company. My insurance company sent out an adjuster. The disaster repair people came and did a really bad temporary patch job that left me with a piece of blue tarp between me and the elements. I did load after load of laundry, since we used just about every towel in the house to clean up the water that leaked into my bedroom. I caught a nap or two in the midst of the phone calls and repairmen knocking around my house, but it wasn’t enough and I could feel myself sliding back downhill health-wise.

Sunday came and so did another round of storms. It rained all day. It rained INSIDE MY BEDROOM all day. I called the disaster people, who said they would send someone out, but they never did. I had to drag the big ladder out of the garage and to my bedroom. I got some screws, a piece of wood, and my husband’s drill and I reinforced from the inside the crappy patch job the disaster guy did up on the roof. I don’t know if it’ll stop the leaking 100%, but I feel better that there’s something more between me and the outside than a thin piece of blue tarp.

I still have plastic on the floor and a big bucket under the hole. The last thing I see when I go to bed at night and the first thing I see when I get up in the morning is this giant hole in my ceiling. It pisses me off. It pisses me off because this is the second time in fourteen months that this guy’s trampoline has put a hole in my house. Same. Exact. Trampoline. There is no “resting” when I go to bed. There is laying in bed, angry and seething, until I fall asleep. There is waking up, not bright-eyed and bushy-tailed, but furious. This is my bedroom. My sanctuary. This is where I go when my illnesses get the better of me and I need to recharge.

Today is Monday again and the week that has passed has done a number on me. I woke up with pain in both hips, both feet, and both hands. My butterfly mask is back. My head was hurting. My throat was hurting. When I got home from dropping my daughter off at school today, I sat down in my recliner and fell asleep hard. I slept for two solid hours. When I woke up, I was still tired, but my heart was racing. This is all just too, too much. Too, too much.

My husband has been in Japan for almost four months. I have been up and down with my illnesses. I’ve gotten steroid injections in my left food, left hip, and both sacroiliac joints. I’ve started new medicines and stopped other medicines. I’ve had up days, where I was able to accomplish things, like painting my sitting room. But I have also had horribly down days, where I would not have gotten out of bed if I had not needed to take my daughter to school and let my dogs out to potty. Some symptoms have improved, others worsened, and there are some new ones.

Through all of this, I have learned that the medicines I take can do only so much. The absolute best medicine I have at my disposal is sleep. Without it, my health takes a nose-dive. With it, I can function when I need to, most of the time. After the week I have had, I will never again allow myself to feel guilty for taking a nap, going to bed early, or sleeping in. This week has illustrated to me very clearly how important sleep is to someone juggling chronic illnesses.

I am disgusted that in this one thing — this one thing that should be held as sacred — politics divides us who suffer. It is an Obama vs. Trump thing. It is a poor vs. rich thing. It is a healthy vs. sick thing. The way the Obamacare replace/repeal debate is being framed in the media pits Americans against one another in such a way that no meaningful solution can ever be found, because none of us is focused on fixing the real problems. All that’s really happening is that we are fighting amongst ourselves in the very places we go to seek a little commiseration.

If you are lucky enough to be an American citizen, then you should know we have a document called the United States Constitution, which does NOT outline our rights, but which LIMITS our government. Unlike other countries, our rights are not given to us by any government and, therefore, cannot be taken away by any government without our consent. Although you wouldn’t know it today, the actual duties of the federal government are quite small: provide for the common defense, protect our Constitutional rights, print money, establish federal courts, maintain a postal service, protect copyrights, establish universal weights and measures, and raise taxes to do these few things.

The Constitution contains our Bill of Rights, which speaks to our individual liberty and which prohibits our government from infringing upon it. Everyone knows the first amendment: “ Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the government for a redress of grievances.” Most know that the second amendment speaks to our right to bear arms. Many know there are protections against illegal searches and seizures and cruel and unusual punishment. My favorite amendment is the tenth, which states, “ The powers not delegated to the United States by the Constitution, nor prohibited by it to the states, are reserved to the states respectively, or to the people.”

There is nothing in the Constitution about healthcare or health insurance. Nothing. But if there were, it would probably sound something like this: “Congress shall make no law respecting the establishment of a health care system, or prohibiting the people from choosing medical care and health insurance that best meets their needs.” You see, our form of government is not one in which the government tells the people what to do. The people tell the government what to do. And yet we have somehow gotten ourselves into a situation where We the People are forced to purchase something many of us do not want and cannot use and we are penalized via taxes if we do not comply. It’s unAmerican.

Incidentally, the right to “life, liberty, and the pursuit of happiness” is not found in the Constitution. That was written to King George III in our Declaration of Independence.

Today we are all watching and waiting for the Affordable Care Act (“Obamacare”) to be repealed and, hopefully, replaced with something better. Judging from some of the commentary I read in various forums addressing this matter, some of us are not only willing but actually desirous of trading our medical freedom for governmental interference and dependence. How on earth did we, as Americans, get here? We are forced by our government to purchase health insurance that we cannot use because the deductibles are too high or we have no money left after paying the premiums. Some people pay more, some people pay less. More people may have health insurance, but less people have adequate health care. Health INSURANCE and health CARE are not one in the same!

No one in any of the forums I’ve visited can answer this question: “Since the government has no money it does not first take from someone else to give to you, what percentage of your healthcare costs should a total stranger be forced to pay and how much should their health suffer so that yours may be improved?” If you have an ounce of American integrity, the answer to that question is ZERO.

Now, that is not to say that we should do nothing to help the plight of the chronically ill population, to which I belong. It is never a question of should we help, but how should we help. I want our government to put my tax dollars into incentivizing American college students to become doctors, especially those who specialize in autoimmune diseases. I want our government to stop paying for abortions, which is not healthcare, and invest in medical research. I want our government to work with pharmaceutical companies, healthcare providers, insurance companies, literally every entity involved in the heathcare industry to find ways to cut costs. I want to eliminate waste and duplication and corruption. I want competition and free markets and patient-based solutions. The government does not do healthcare well. If you don’t believe me, visit a VA hospital. Why does Congress get one health plan and our veterans get another?

What if health insurance was so cheap you could buy it without the government forcing your nextdoor neighbor chip in? What if healthcare were so inexpensive that you didn’t even need insurance for the basics? What if your doctor prescribed a drug and the insurance company just paid for it, without requiring you to fail on multiple other drugs first? What if there were so many well-trained physicians that they competed for our business and gave us thorough, excellent care instead of trying to cram a complex visit into a 10-minute slot? What if there were so many insurance companies offering so many different plans that we could each craft something that would suit our specific situation the absolute best for the absolute lowest price?

The ACA does not deliver on any of this. Rather, it creates more government involvment, more government dependency, more loss of liberty. I don’t know if the Trump administration’s replacement will achieve any of this, but I know we’re not getting it now with the ACA. I choose to hope for something better. I choose to advocate for solutions that make healthcare and health insurance better for everyone, not just the select few. And I choose to look at this as an American issue, not a political one.

Here’s a paraphrased example…

Person: What are you doing?

Me: My lab report just came in and I’m looking to see if there are any important changes.

Person: Are there?

Me: Yeah, a few. My ESR and CRP are elevated. I expected that; they show inflammation and my joints are seriously hurting and my skin is flaring on both hands, so… But a couple of things are a little off — low lymphocytes and high neutrophils. plus low anion gap with normal electrolytes— and I’m not sure what that means, if anything. I’ll ask my doc tomorrow.

Person: Didn’t you go to the doctor yesterday?

Me: Yes, I went to the spine doctor. I have bursitis in my left hip and inflammation in both sacroiliac joints. I have to go back today to get steroid injections, one in my left hip and two more into my SI joints. Hopefully, the steroids will knock out the inflammation that’s causing the back and hip pain. They offered me anesthesia or Valium for the procedure, but since I don’t have anyone to drive me home and watch over me, I’ll have to do it without. I’m a little freaked out about it.

Later in the conversation…

Me: It’ll be time to mow the grass soon.

Person: Well, better get on it!

Me: Yeah, I’ll get right on the lawn mowing with my back pain and my cracked hands and my arthritic fingers.

I wanted to pound this person’s head into the cement and scream…

I AM SICK! I AM IN PAIN! PULL YOUR HEAD OUT OF YOUR ASS AND HELP ME!

But I didn’t. I changed the topic. Nothing I can say or do will ever make a difference. You can’t make people care about you. You can’t make them take you seriously. You can’t make people who don’t give a shit feel empathy.

You can’t make people listen when you speak if they have zero interest in you.

I have told this person that I have psoriatic arthritis in my hands, feet, and SI joints. I have told this person that my psoriasis is flaring, causing cracked and bleeding skin on my hands. I have told this person that the lupus continues to cause me soul-crushing exhaustion most days. I have told this person I have been down with a nasty cold this week and a skin infection last week. I have told this person that even my HAIR hurts, because even my scalp is inflamed. And I have told this person I have to stay out of direct sunlight because it is contraindicated by the disease and the meds.

But this person? This person’s only concern is that I mow the grass and take out the garbage. “Oh, and make sure you don’t leave cardboard on my table saw because the damp will ruin it.”

Yeah.

Some of test results are a little hinky. Most likely, it’s nothing. I’m sure I’m worrying over nothing. When you put the picture together, though, there are some signs that could be indicative of blood/bone marrow cancer. Since there is a significant family history of blood/bone marrow cancer, I am a little concerned and I am anxious to speak to my doctor and have him tell me it’s nothing to worry about.

But even if the news is not good, you can bet your sweet ass I will take it to the grave before I tell this person about it. From now on, I’m fine.

Yet here I am, propped up at my desk, refreshing my email every so often to see if my results are ready. I’m not sure what to expect. I feel like homemade hell and that tells me my sed rate and c-reactive protein could be up, but I’m also on two new meds, which might be keeping those inflammation markers in check. No one has ever done a complete and total work-up for all of these things until after I started taking medication, so there is no baseline. I have the basic CMP and CBC results from a routine physical in 2013 for comparison, but no sed rate, c-reactive protein, dsDNA, etc. from the time before diagnosis with which to compare my current state.

With no prior healthy values to compare to my current sick values and with no pre-medication values to check against my current medicated values, how does any doctor anywhere know anything about what is really happening with me? If certain results come back “within normal limits” is it because I’m healthy or because the drugs are helping? The goal is not necessarily to get back a perfectly normal lab report. The goal is to get back a perfectly normal lab report AND FEEL PERFECTLY NORMAL.

How do we get a doctor to see beyond the numbers into the actual life of a patient? If the normal range for a sed rate is 0–20, is 14 really normal if your five previous sed rates were 1–2 and you are experiencing increased pain and joint stiffness? If your sed rate was 25, but drops down to 18 after starting meds, then is it really normal? Is there a difference between “normal normal” and “medicated normal”?

Perhaps your dsDNA is positive and your rheumatologist diagnoses lupus, starts lupus meds, then schedules you for a retest in several weeks. Your dsDNA may be lower. It may even fall within normal limits. There may even be zero antibodies to your double-stranded DNA seen. Does that mean you no longer have lupus? Are you in remission? Are you suddenly well? Did the flare end on its own or did the medication stop the attack on your dsDNA? At my last check-up, my dsDNA was still positive, but the number was lower. I didn’t feel any different. Was the flare ending? Was the medicine helping? Would it be higher if the test was done when I felt my worst? Better if tested when I’m feeling relatively good? Who knows?!

I want to be healthy. I want to be 100%. But if I’m not, then I want my test results to show accurately what I am experiencing so that my doctor can help me get closer to 100%. Unfortunately, the numbers on those lab reports do not always reflect reality. One of the most frustrating things for those of us with chronic illnesses is that our routine labs are a look from the outside of a house through the window… they show what is going on in one room, but they cannot see what is inside the rest of the house.

The worst part of being sick with this kind of illness is feeling like you have to prove you are sick. A doctor looks at normal results and says, “Well, this is great news! The meds must be working!” But the patient? The patient is exhausted, losing her hair, experiencing increased joint pain and stiffness, hoarse, freezing one minute and burning up the next, unable to remember how to spell her own name, and beginning to question her sanity. This is not normal. This is life with a chronic illness.

That spring and early summer, I continued training with an eye towards a half-marathon that I do every year. My runs got longer and faster. I was finally, with my symptoms mostly controlled and my body adjusted to the meds, able to train consistently again. In the back of my head, I was entertaining full marathon thoughts, as well. I’d had to wage comebacks before after minor running injuries, but this comeback was after a two-month break to deal with my psoriatic disease. I was afraid I wasn’t ever going to be able to get myself back into half-marathon shape, so the sub-30 5k and the ten-miler I did a few weeks later had me feeling good about my progress.

And then my dad died. My psoriatic disease was flaring and I was dealing with both skin and joint symptoms. I travelled home to be with him when he passed and stayed on for three weeks to help out my mom. I noticed in the photos from the wake that I looked downright awful, but then we were all grieving and that grief showed on all of our faces. When I went home, though, and resumed normal life, I noticed that everyone else returned to looking normal. I still looked like I’d been hit by a truck. I wasn’t able to run at all most days due to foot pain and just sheer exhaustion.

I’d been home for about three weeks or so when my husband had to leave for a business trip. He was out of town for a couple of months and it was during that time that I tried to get back out on the road again. I forced myself up and out the door three or four times a week, but I was stunned at how rapidly my speed and endurance had evaporated during a three-week break from running. It felt way harder than it should have and even short, relatively easy runs seemed to be taking more out of me than they should have. Thirty minutes of run/walk intervals would often require a three or four hour nap. I knew something wasn’t right.

It was during this time that I was diagnosed with lupus. I had the malar rash on my face, joint pain, extreme exhaustion, hair loss, a positive ANA test, and a positive dsDNA test. Yep, lupus. I had no idea the diagnosis was coming. I thought I was seeing my rheumatologist for a routine follow-up for psoriatic arthritis. I was floored.

Since then, I have not run much, if at all. I’m just too tired. And “tired” isn’t really even the right word to describe it. I call this thing I experience “soul-crushing exhaustion”. It’s awful. I was put on steriods, stopped two medications, started two other medications, and run ragged going to have my blood drawn for labs every ten minutes. Today, as I write this, most of my symptoms are starting to improve and I can tell the new medication is beginning to make a difference. But I just can’t shake the exhaustion. I have a brand new pair of running shoes just waiting for me to put some miles on them and I cannot seem to make myself put them on.

I don’t mind starting all over again. I do mind starting all over again, then again, then again, then again, then again. I never seem to get back to where I was. Each period of starting over moves me two steps forward, but each health crash takes me five steps back. I can’t seem to get back to Square 1. I don’t mind starting over from a solid, healthy position, but I do mind starting over at a deficit.

Today I am wondering if I even should consider starting all over again… again. I miss running. I miss feeling strong and powerful and invincible. But each failed attempt to regain lost ground leaves me feeling demoralized. I am wondering if maybe my running — or at least my racing — days are over.

I don’t want for one second to let either of my autoimmune diseases dictate such things to me, but I have to be realistic. I have psoriatic arthritis which affects my feet. I have lupus which affects every single part of me. I take drugs that add side effects to the mix. I can get good control over the symptoms for a good portion of the time, but these diseases are incurable and flares are unpredictable. Maybe it’s time to put running away in a box with other momentos from better times and try to figure out who I am now.

Ugh.

Can we please just stop? Please? Just. Stop.

I understand that half of America did not vote for President Trump. I get that many people are concerned about how various important issues are going to shake out. I have issues that concern me, as well, and President Trump was certainly not my first choice, but come on. The hysteria is neither legitimate nor healthy. It solves fewer problems than it creates and causes more stress in the lives of Americans who are stressed enough already. So just stop.

Yes, the ACA will likely be repealed, but it will also be REPLACED. I hope it will be replaced with something better. I think it will be. I know the replacement will not make 100% of Americans happy and I don’t care. If the replacement does more good for more people and harms fewer people than Obamacare, them I’m all for it. No one — Republican or Democrat — wants to take away anyone’s healthcare. But Obamacare is not healthcare… it is health insurance and the expense of this health insurance prohibits the receiving of actual health care for many people.

Those evil Republicans have friends and family members who are impacted, too. There actually are alternative plans out there and have been for years. No one wants you to die so that you can’t vote. No one wants to take away healthcare for people with pre-existing conditions. No one wants to punish sick people. This is not a political thing, so let’s not make it into one. Everyone needs to avoid stress, especially sick people, so I wish the media would stop lying to us with their doom and gloom slant on all things connected to repeal and replace and I wish we, as Americans, would stop allowing ourselves to be used by political game-players. Just stop.

The Department of Education is not suspending IDEA. They can’t. It is a FEDERAL LAW. It was passed BY CONGRESS. Betsy DeVos can’t repeal it. She has no power to take away anyones rights under IDEA. Period. She may have some poorly-explained ideas about the states and their involvment in the enforcement of the law, but she can’t end or change the law. Maybe, just maybe, instead of adding to the stress load already being carried by parents of special ed students by perpetuating the irrational fear that IDEA rights are under attack by Betsy DeVos, maybe we should dial it back a bit and see what happens. Maybe things will get better! Things are certainly no worse than they were on January 19th or on February 6th. I have no idea what kind of Secretary of Education DeVos will be, but I do know that the public schools that are failing now are not her fault. Why are we anticipating the worst? Does that alleviate our worry? No. It doesn’t. Just stop.

Oh, and just because the website experienced server issues and was down for a short time doesn’t mean Betsy DeVos single-handedly took away the Individuals with Disabilities Education Act. It just means there was a server problem. It’s been fixed. It may look different going forward. New administrations often make changes to government websites and this one is no different. That doesn’t mean your son’s teacher will be ripping up his IEP tomorrow.

As for the deportations… so what? The Trump administration is doing what President Trump promised to do throughout the campaign and is removing criminal aliens. Again, so what? So law enforcement officials aren’t supposed to enforce the law? So only white legal residents can be arrested for committing crimes? So if you’re here illegally and commit a crime we’re supposed to just — what? — look away? Let you return to the streets? Give you a Voter ID, food stamps, and a Medicaid card? I’m not torn up about this. Separating families? Hey, that was YOUR choice, when YOU came into this country illegally and then YOU committed a criminal act. If I rob a bank, I’ll go to prison. That will separate me from my family, right? It’s not about your race or your nationality. It’s about your CRIME. Don’t want to be deported? It’s easy. Don’t come here illegally and then commit a crime once you get here. Problem solved. How hard is that to understand? Just stop.

The “Muslim ban” isn’t even a thing, yet it’s all we hear about. It’s not a “ban” and it doesn’t pertain only to “Muslims”. I’m more concerned about why the FBI was listening in on Mike Flynn’s conversations and why operatives from the Obama administration seem to be working towards the destabilization of their own government. Smells a little treasonous to me, but whatever. I’ll withhold judgment until I see what unfolds.

My point with all of this is that we need to stop, take a deep breath, and investigate. A page I follow on Facebook posted an article today about Betsy DeVos taking down the IDEA website and the link had already been restored. Why? Why did that editor not take two seconds to CLICK ON THE LINK just to see if the story were even true? I’ll tell you why. It’s because there’s a political motive to every freaking thing anymore and I say JUST STOP!

Stop letting your innards be tangled. Stop letting your buttons be pushed. Stop letting your bell be rung. Just stop. Every single one of us should have the exact same initial reaction to every bit of news we consume and that reaction is this: PAUSE. TAKE A DEEP BREATH. INVESTIGATE. Only after we have done this can we respond, rather than to react. The people pushing the political agendas don’t care about our responses; they only care about our reactions. So stop giving them the reactions. Stop allowing them to play fast and loose with your physical health and mental well-being. Just stop.

I have psoriatic disease that primarily affects my hands and feet. When my condition is flaring, routine things become difficult. It’s hard to hold on to a coffee cup, a pen, or even the steering wheel. Holding a hairdryer is tricky. Tying shoelaces is impossible. Turning a doorknob is excruciatingly painful. Anyone who has any kind of autoimmune arthritis knows you just have to make adjustments when you are hurting. Maybe you wear the slip-on shoes or ask someone else to drive. Those adjustments are easy to make, but there is no getting around doorknobs!

By the time I was diagnosed with psoriatic disease, I had already developed some workarounds to get me through times when my condition flared. One evening, though, I was tired, hurting, and frustrated and I vented to my husband about our doorknobs, for which I had no workaround. Between the skin pain and joint stiffness, doorknobs had become my enemy. Several times a day I open the door to the garage to get to either the recycle bin or my car. With two dogs wanting in and out what seems like every fifteen seconds, our back door gets quite a bit of use, also. The doorknobs on the two doors I use the most were painful for me to grasp and turn. And so I vented to my husband, hoping he might hit them with WD-40 when he got home from work. He said he’d see what he could do.

I got up the next morning and found that all of my round doorknobs were gone. In their place were these delightful door handles that pop the latch open with just the slightest pressure. No more gripping! No more squeezing! No more pain! My husband had stopped on the way home from work at 1 am and bought new door handles, which he then installed before he came to bed. He left a sweet note for me at the back door, also, saying he loves me and hopes the new door handles help. Oh, they helped and then some!

It wasn’t Valentine’s Day or my birthday or Christmas or anything like that. It was a random day in September. And although my husband wouldn’t call himself a hero over it — “I was just tired of hearing her bitch about letting the dogs out,” he’d say. — it was medal-worthy to me. If the circumstances aren’t perfect for celebrating Valentine’s Day this year, then I am going to celebrate the circumstances that show me perfectly that I’m loved every day of the year.

Over the past couple of years, though, I have learned that “avoid stress” is not unreasonable advice to give. The greater the stress, the harder it is for me to get through a flare. I had to take a hard look at how I handle stress. I am in a situation where I am sometimes not able to choose or decide or plan things; I can only react to whatever is on any given day. Feeling powerless is probably the greatest cause of the stress I feel on a day-to-day basis. The harder I try to control things that are beyond my control, the more stress I feel. And no matter your health status — perfectly healthy or less so — we all know that more stress makes everything worse.

I have not perfected a system for eliminating stress from my life yet. I don’t even know if that’s a reasonable goal. But I am trying to adjust my thinking on the things that cause me stress. First, I ask myself if there is anything I can do about it. If there is, then I decide whether or not I want to do that thing. Once the decision is made and the thing is done or undone, I move on. If there’s nothing I can do, then I do nothing and advance straight to moving on. Pretty simplistic, but it helps to pause and ask myself whether or not I really need to or want to react to something. Most of the time, I don’t. That pause and making the decision whether or not to react helps me feel more in control and diminishes the stress I allow myself to feel.

This is how I am approaching the uproar over the probable repeal of the Affordable Care Act (“Obamacare”). Is there anything I can do about it? Well, I can educate myself and vote in every election. Check! I can make sure my government representatives know how I feel about the issue. Check! Beyond that, there’s nothing else I, personally, can or would do. Others may be involved in activism or lobbying and would do additional things, which is great for them. Once we have done what we can do, though, I don’t think there is any point in continuing to stress out about it, whether internally, online, or in our conversations with others. It just makes me feel worse.

Politics is stressful. The political climate today is ugly. It is hard to distinguish truth from fiction sometimes, especially when extremists from every party, belief, or “side” are screaming their version of it at you. People are fearful their pre-existing conditions will no longer be covered once the ACA is repealed. Some of us are anticipating a future where we will not have health insurance that covers our pre-existing conditions and none of us wants to think about having to come up with the cash to pay for the specialists and expensive medications that we require. I watch the news. I hear the dire warnings. I feel the stress.

Somehow, our election of President Trump has translated into the immediate threat of all of us losing our access to healthcare. I just don’t think this will happen. I don’t think that’s a realistic assumption and I have decided that, for me, the potential repeal of the ACA is just not stressworthy. After all, every single Senator and Congressman — even President Trump himself — has a friend or family member with a pre-existing condition that will be impacted by this decision. It’s not an “us versus them” thing. They are us, too. There is no special class of people who don’t get health problems.

I go to my Congressman’s town meetings. I hear what he has to say. I think, on this issue, he has my back. I choose not to react to the anxious hand-wringing of political pundits on TV attempting to scare us with their “what ifs” and worst case scenarios. It’s a shame that our very real health problems are being politicized to sway our opinions one way or another on this issue and it is causing division within this community. I get that this is huge, but I also get that making myself sick over it won’t change anything.

Here are the differences I noticed…

No pinching!
With the Humira pen, the instructions advise pinching a chunk of flesh into which the medication is injected. The Cosentyx “Sensoready” pen is just held against the flesh, no pinching required. This is important if you, like me, are taking the drug to combat psoriatic arthritis. Sometimes it’s hard to pinch that inch.

No pain!
Well, not NO pain, but very little pain. As compared to the Humira shot, the Cosentyx shot hurt much less. I don’t know if it’s a smaller gauge needle or if it’s a less viscous medicine, but it simply hurt less injecting the Cosentyx. I did hit a blood vessel on the second leg which bled a little, but it was nothing a small Band-Aid couldn’t handle.

No plunger!
The Humira autoinjector pen has two caps, one covering the needle and one covering the plunger. The Cosentyx Sensoready pen has one cap covering the needle only and no plunger. Again, this is very helpful if you have stiff joints, because you don’t have to hold the pen steady while simultaneously pushing in and holding the plunger button at the top of the pen with the same hand. With Cosentyx, you hold the pen tightly to your skin and it does the rest.

No question about the injection!
With the Humira pen, you will hear a click after you push the plunger to let you know the medicine is injecting. You’re advised to count to ten and then make sure the yellow marker in the window stops moving before removing the pen. Cosentyx clicks once as the medicine starts flowing and clicks again when it is almost done. Once the green marker in the window stops moving, you know to remove the pen. With the Cosentyx, I could look away (read: distract myself visually) while the medicine loaded. I heard the second click telling me it was almost done, looked at the window, confirmed it was finished, and removed the pen. With the Humira pen, it was a little hard to see sometimes inside that window, but the Cosentyx pen gives you that second click so you know for sure.

No waiting!
Okay, maybe not NO, but it seems like LESS. This could be all in my head, but it feels to me like it takes less time for the Cosentyx pen to shoot the medicine into your body. Or maybe it’s the pain that makes the Humira pen seem to load so slowly.

No bi-weekly shots!
Cosentyx is once a month; Humira is every other week.

No methotrexate!
I should add the qualifier “yet”. I had to take methotrexate with my Humira, but am not currently taking it.

And for the negatives…

Missing alcohol swab!
The Humira box does come with two pens and two alcohol prep pads. The Cosentyx box does not. These are not hard or expensive to purchase, so no big deal. Both drug manufacturers have websites that offer welcome kits, information, sharps containers, etc.

Hello, side effects!
I don’t remember ever having any side effects from the Humira, except maybe some nasal congestion. Within a half-hour of injecting the Cosentyx, though, I developed a headache. Not a migraine-intensity headache, but a pretty solid headache.

Bigger loading dose!
I injected two Humira shots the first week, then once a week for three weeks, before the regular dose of once biweekly. The loading dose for Cosentyx is two shots a week for six weeks, then once a month. To be fair, I was on the lower dose of Humira and the higher dose of Cosentyx, so…

I have high hopes for this medication. We’re getting off to a good start!