Being Thankful in the Midst of Chronic Pain.

November is a month (typically) filled with posts of gratitude and daily updates on what people are most thankful for, but when you have chronic pain/illness Thanksgiving can be very difficult.

I am not going to sit here and say that being thankful is easy… it is NOT. I’m lucky enough to have things in my life that keep me grounded and that I am extremely grateful for. But more often than not I feel quite the opposite. I grumble at the prospect of another medical test, I moan about how desperately I want to eat the foods I used to be able to eat, and I cry for the life that I “should” have had before my body rejected me. I don’t like feeling this way, but I recognize that it is my human nature to want something better than what life has given me.

I used to suppress that part of my personality. I would always put on my mask of gratefulness and fake my way through life. There are a lot of times I still have to do that (I work in customer service, I have no choice), but I refuse to be an artificial version of myself with those I care about. They deserve better and so do I.

Some people can’t take it. There are people that look at me and all they see if that bubbly girl that used to have so much life! Now I’m always so “cynical”, when did this happy person get so cynical?! A- I’m not, I just roll with what life gives me. If life gives me one piece of crap after another, I can’t be held responsible for my attitude. B- I have always been this way, now I’m just not faking my way through my day.

Does that mean I’m never grateful? No, of course not. As I said above, I have so many things to be grateful for and I am, very much so. I just find that when in constant pain, it can be difficult to express properly. Just typing a daily “today I’m thankful for…” post feels empty. I’m in no way saying people shouldn’t do those posts! If that is helpful for them, go for it. For me, it’s just another thing I have to fake my way through, I can’t do that anymore.

Every day my gratitude is expressed in the things I do, not in the words I say. I tell my kids how much I love them. I thank my husband for all he does for me on a daily basis. I work until I can hardly stand it anymore, because I love my job and I appreciate the opportunities it provides me. I do whatever I can for my extended family, because they’ve done so much for me.

I’m blessed to have people in my life that care about me, I know this. I wish everyone could experience that love. I also have pain, I do not wish that pain on anyone… ever. So when I say I’m grateful for anything, it is huge. Monumentally huge! My body is literally fighting me, every single minute, of every day. I will not make empty promises, nor will I pretend to be grateful for what I do not have.

For those that do not have someone in your life that helps you, there is still hope. There will always be that one thing to get you through. Simply find it. Grasp on to it and do not let go. Don’t let anyone push you to be anyone or anything you’re not. If you’re in pain, never let anyone invalidate that feeling. You’re allowed to express how you feel! You are important. You. Are. Important!

Finally, I am thankful for you… really.

An Open Letter to President-Elect, Donald Trump (from a disabled citizen).

We’re on edge. There is really no way around it, people with disabilities are worried about their future and understandably so. This has nothing to do with partisanship, or who voted for who. We recognize that you have won the electoral college and will become our President in January. This is about so much more than that, this is a plea for recognition.

Our plight is two-fold, we need access to essential healthcare and protection from ableism.

Ableism has always been a problem, but has just recently started getting some attention. It encompasses an over-all belief that people with disabilities are not as “good” as an able-bodied person. In Nazi Germany, people with disabilities were killed just for being sick, but here in America it is much more subtle. From jobs that discriminate based on physical ability to harassment in a parking lot by the uninformed. We struggle to find a compromise between wanting to be well and wanting others to accept us the way we are.

Many people with disabilities are dealing with incurable illnesses, chronic conditions that they have no control over. Sometimes they end up in a wheelchair, sometimes they’re able to blend in to the fabric of society without notice (sometimes it’s a little bit of both). Invisible illnesses outnumber the visible. So many people deal with pain on a daily basis and find little to no compassion or understanding, even from friends and family. I am a person with an incurable illness, and I know there are millions of us (yes, millions) that are begging to be heard, but just don’t know what to say.

Most of us have spent years going to specialists, spending every dime we earn on doctors that try to help, but often can only prescribe medication to lessen the pain. We’ve tried physical therapy, holistic/eastern medicine, vitamins/supplements, and everything under the sun to find relief. But in the end, all we can do is live with what we’ve been given. Some people find medications that relieve enough of their pain to allow them to function on a day to day basis, others find that medical marijuana is the only option.

Lately there has been a “crack-down” on pain pills and the doctors that prescribe them. The risk being that many people that start on opioid medication eventually turn to heroin. Unfortunately, this witch hunt has turned on its heels and we’re now seeing that when patients are taken off of their opiates, that is when they turn to heroin. So with all the doctors being forced into cutting out their pain patients medications, there’s a huge influx of drug addiction. Not the other way around.

Another option for chronic pain patients (like myself) is medical marijuana. Several states have just legalized it, but there are still too many that it is considered a crime. Based on hundreds of studies and tons of research, it has been proven that marijuana/cannabis causes far less harm to the human body than most medications that are passed by federally funded corporations. People in pain need to have access to this natural medication, it is as simple as that.

“Obamacare” is a loaded topic, one that often divides even the closest of friends. Personally, there are aspects of the Affordable Care Act that I like, others that I don’t (at all). But the importance of making sure everyone has availability to medical treatment is the real issue and should never be overlooked just because of party affiliation. It is well known that in your speeches and campaign promises, you said you would “get rid of Obamacare”. First and foremost, we need to stop calling it Obamacare. That is a nickname and not official in any way shape or form, let’s call it what it is, The Affordable Care Act. Then, let’s make it actually affordable! Assign a team to the task of making it work for us, for everyone. It CAN be done.

No one should have to fear losing their health insurance just because someone else has taken a political office, but that is the reality many face right now. It is up to you now to make sure that does not happen.

Finally, I want to say this… please be a good person. This position is about so much more than just being a powerful person, it has to be about being the right person. You claim to be a person of faith, I want to believe that is true. I want to believe that you will stand up for those that cannot stand up for themselves. I (and many others) just have not seen that in you as of yet. It is time to be “presidential” and calm our fears. ***Be the good.***

Monsters Living Among Us and Feeding on Our Pain.

*Sits down at the campfire, with flashlight in hand*

Are you ready for the scariest monster story you’ve ever heard?

Over the course of thousands of years, an evil has been growing in our world. It invades people’s bodies, it feeds on their pain and fear. It spreads throughout the body, forcing constant agony on the host. That is how it breathes, that’s the energy it feeds on. So the person slowly declines and suffers an unseen struggle. Others do not (and often cannot) believe them. For many years they were accused of being monsters themselves. They were cast out as demons, or tried as witches. All while the monster inside them feasted on their misery. In later years people assumed it was something that individual could eradicate with herbs and special foods. When in fact, the only relief came when the pain subsided. Sometimes they could reach out to others and find help, but not everyone believed the pain was real. In many cases the monster was so strong that someone infected just couldn’t battle it anymore and took their own life to stop the pain. Even still, people without the monsters didn’t believe. They looked at those in pain and saw only a person, not the struggle inside. These monsters cannot be killed, but they can be quieted. Their food supply can be cut off, by finding people that believe the pain is real and are willing to help them the way they need to be helped.

The scariest part of the story is that these monsters exist, and they occupy millions of people all over the world. They come in the form of auto-immune disease, chronic pain, genetic disorders, and so much more.

We fight every day against the monsters! All we want is to be heard, and to have people believe our pain is real. We want research on pain medication that will once and for all HELP people in pain. We need to stop assuming everyone that takes pain meds are drug seekers. We need to recognize the impact of pain on mental health and take this in to account during treatment. We HAVE to do better! We HAVE to BE better!

We can’t let the monsters win.

Why do most people think everyone in a wheelchair is paralyzed?

During a recent conversation, it dawned on me that so many people in wheelchairs are capable of walking/standing, but are afraid to because of what other people will say. There has to be a way to bring awareness to this and stop the fear of persecution.

There is this concept among the able-bodied that anyone in a wheelchair is paralyzed, which is incredibly narrow minded. But think about it… have you seen someone in a store using the electric scooters and then stand to get an item off the shelf. How does that make you feel? When you see someone in a handicapped spot (even with a placard) walk into the store, do you automatically think they’re faking or using a tag that doesn’t belong to them? Think hard, we’ve ALL done it at one point in our lives.

The truth is that people with invisible illness often need assistance, but not necessarily every day. That person you see walking in to the grocery store could very well have been completely unable to walk the day before. That person using the scooter, most likely is having a bad pain day and wouldn’t be able to get their errands done if it weren’t for the help. Often reaching for something off a high shelf can be just as painful as walking around the store, so standing to get it is the better option.

Yet… we shy away from it because of all the judgemental stares. We will park without our tag, just to keep people from being cruel. Bullies come in many forms.

Then there are those of us that use a wheelchair on a regular basis, but are NOT paralyzed. We can stand if needed and sometimes sitting all day is just as bad for us as walking. We may have to get up just to stretch, but that’s not what people see, so we confine ourselves to the chair and pray for comfort. That fear is brutal!

Personally, I use a wheelchair any time I would have to stand our walk for a long time. If I don’t, my knees and hips give out and I’m considered a fall risk. So I have to use the scooters at stores, especially if I need several items. Otherwise my pain will be too much, even with my cane. My manual chair is not as helpful in stores, so the scooter is the best option. I’ve started using my cane to get in to the store and keep it with me on the scooter. This is no easy task! But it is a visual for people that I really do need mobility assistance.

What NEEDS to happen is an awakening of understanding to the struggle of people with invisible illness! We need to dispel the myth that everyone in a wheelchair is paralyzed. Yes, some are… but many are not! To judge someone without knowing their circumstances is plain and simple bullying. It is ableism and needs to stop (even among those with disabilities). It is not our place to judge.

(On a side-note. If you’re not disabled and take up a handicapped spot just because the lot is too full, or you just don’t feel like walking that far… stop it! Seriously, leave those spots for people with disabilities. Even if you’re just running in somewhere “really quick”, that’s not a good excuse. You never know when someone with a real need will drive up.)

So, don’t be afraid to be yourself. Stand to get what you need, stand to stretch, and most importantly stand up for your right to stand.

What does “Ableism” mean to me?

Ableism (officially means)- a set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities. But what qualifies anyone to asses these “practices and beliefs”? How has it that ableism has gone unchecked for SO long? This is more than just discrimination against disabled individuals, this is about able-bodied people going out of their way to find fault in our disabilities.

It may not seem like it, but one of the worst forms of ableism is unwanted/unsolicited help. “Help” is a very vague term; sometimes it can mean physically helping someone with a difficult task, this is not the kind of help I am talking about (although there are cases it can be the case). I’m talking specifically about the times that able-bodied people suggest they are helping someone with a disability by giving them “advice” (whether we want it or not).

Let me make this VERY clear… not ONE case of invisible illness is exactly the same. NOT ONE! So, we don’t care if you know someone else with our condition that magically got better (insert enormous eye-roll here), or if you read an article one time that said if we did……. all our pain would disappear. You’re not helping! It’s ableism, whether you are meaning to or not. You’re assuming to understand how we feel, but you don’t, you can’t.

So, how does this factor in to the official definition? Perfectly, that’s how. Unwanted/unsolicited advice is both a belief and practice (on the part of the advisor), because they’re assuming the disabled person does not have the ability to properly care for themselves. When in fact, most people with disabilities are significantly more versed in their illness than most doctors (not necessarily specialists, but it can feel that way sometimes). When anyone without disabilities suggests that they “understand” what we’re going through and offer advice for potential cures, it is like a knife in the back! Unless you are my doctor… I don’t want to hear it!

advice

Another significant issue is people asking if we’re feeling better. No, we’re not and that’s a horrible question! Better than what? Better than when? We’re used to the common “How are you feeling?” it sucks and we have to lie every time, but at least we have an answer for it. Some of us completely lie and say “I’m ok” or “Good”, others say “Fine” and leave it at that. Personally I’ve found that saying “I’m here” is a good way to stop the conversation, without making anyone too uncomfortable. But when someone asks “Are you feeling any better?” I cringe! It’s ableism to assume that I will get better at all. “But don’t you WANT to get better?” I do, of course! But I have an incurable disease… this is not up for dispute. Think before you speak.

If we want to complain, we damn well are allowed to complain! If any able-bodied individuals out there think differently, see ya. Does this mean no one else can complain about anything else, of course not! But do NOT compare your headache to my chronic migraines. Never compare your back pain to my dislocated ribs and curved spine. Don’t say “I know how you feel” until you’ve been diagnosed with something comparable. Period.

I’ve been a little harsh today, more so than usual, but for good reason. The disabled community deserves to be heard and have our rights upheld! Let’s put an end to ableism!!!

stop2

 

Sometimes the Pain is Just Too Much

So, it’s been a few weeks since my last blog post and I apologize for that. I have had a lot going on in my personal life, but more than that, I have been suffering. I’ve tried to do too much and my body is reminding me why that’s a bad idea. I’m tired. I get a lot of rest, but I’m physically, emotionally, and spiritually tired.

This week is my husband’s 40th birthday, and I wanted to make it special. We don’t celebrate our birthday’s. We have kids… they get parties, not us! But for his 40th, I wanted it to be different. So I set up a very small surprise party, just close family and a fun theme (Lord of the Rings, “Over the UnderHill”). I thought by keeping it small and not going crazy with decorations, I wouldn’t be over-doing it. I was wrong. I’ve spent the last few days practically bed-ridden. It was a fun party and he was surprised, but I have a feeling my days of party planning are over. Which is tough for me, as I LOVE to plan parties! Things may be different once I get my electric wheelchair, but I just don’t know yet.

I also had my 20 year high school reunion a couple weeks ago. It was quite fun and I’m glad I went, but (once again) I over-did it. I took a manual wheelchair (as an electric one was too expensive to rent) and my arms were killing me by the end of the night. Also, the back of my legs hurt horribly! How do people sit in those things without thick cushions? Now I know better! Add to that travel time in the car and sleeping (well, attempting to sleep) on an unfamiliar bed, it was another several days before I “recovered” from that trip.

I’ve started several blog posts within the last few weeks, but nothing has felt “right”. I’m not sure why. I wish I did! As many of my followers know, pain is so much more than just physical distress. These past few weeks, I feel like my pain has engulfed me. I hate that feeling. I’m supposed to be the one helping people through their pain, not hiding my head in the sand whenever I struggle with it myself. But the reality is that I have chronic pain, I’m going to have days and weeks like this. I know that! I also know that I cannot let it drag me down.

So, for all of you out there saying to yourself “No one could possibly be feeling this way!” I hear you! I am there with you! You are not alone!

I’m not going to say the cliche answer of “Just think positively and don’t let the pain win.” That isn’t helpful, I know that. It may be a true statement, but it’s not what we need to hear. We need to hear that people are there for us THROUGH the pain! We need to know that our support system believes our pain is as bad as we say it is. Unfortunately, it doesn’t always work that way.

My hope and prayer for you today is that everyone reading this has someone in your life that understands your pain, and supports you unconditionally. Never take that for granted. (((gentle hugs)))

On-line groups… support, friendship, and much more.

For those of us with invisible illness and chronic conditions, Facebook Groups have become a staple! Not that long ago, social networks were not considered a place for support. It was where the younger generation went to connect, share, and play. But it expanded and now allows people from all over the world to come together and find a common ground. Groups are everywhere and can be found for almost every subject. Some are open to everyone, others are closed (requiring an invitation or friend in the group to join), or secret (where the admins has to accept every request to join). Each kind of group can be helpful for people with chronic illness, especially closed/secret groups that tend to become very personal.

But how personal is too personal? Why is it that we find it easier to open up and talk about personal problems to strangers on-line than our friends irl (in real life)? I have a lot of experience with this! Even though I am very open about my pain and illnesses, there are so many times that I want to vent or complain about how much pain I’m in, but the thought of posting it on my main feed just feels… wrong. I’ll look back at my recent posts and see the last time I “complained” and think twice about hitting send. I feel like a burden to my friends and it pains me even more. So I’ve started leaning more and more on my groups for support. These are people that know what I’m going through! They are dealing with the same pain I am, so my venting isn’t an annoyance, it’s an average day to them.

It’s easy to get “hooked” on that feeling of community and join every group imaginable, but I caution against that. I have made that mistake and had some bad experiences. Some groups are extremely supportive and have people in them that offer information as much as they do consoling words. Other groups are all about drama and gossip. They commune under the guise of chronic pain support, but all they do is talk about how horrible people are to them. I cannot stress this enough, don’t allow anyone to bring you down! Whether it is on-line or irl! Venting and complaining is one thing, but if all someone does is make you feel small or unimportant, they are not worth your time. Period.

I’ve made several wonderful friends through on-line groups! These are people that “get me”, they know what I go through on a day to day basis and don’t judge me when I need to let it all out. I also know that they will have practical advice for me if I need it on certain subjects. Do I know for a fact that if I had known these people irl, that we would have been close? No, of course not. But I know we are now, and that’s all that matters.

Some advice I would give if you’re thinking about joining an on-line support group. Contribute. Contribute. Contribute. Don’t feel like you have to be a spectator, unless that is where you feel comfortable (especially at first). But the more you contribute, the better you will feel about opening up and asking for help when you need it. Contributing isn’t just posting images and/or articles. It’s commenting on other people’s posts with some insight that you’ve learned through your personal life, it’s reacting when people say they’re having a rough day, or it’s offering a virtual hug when that’s all you can do for them. You’ll find that your experience with groups will be more rewarding and that it will take less time to incorporate into the fold.

A message to my friends (on-line and irl): Thank you! Thank you for being there for me whenever I need you. Thank you for listening to me whine and moan about every aspect of my life, especially my pain. Thank you for being you!

What Does “Pain Awareness” Mean?

September is Pain Awareness Month. For some people it’s an opportunity to share images that represent their particular chronic illness, for others it’s a chance to research methods of pain relief and their effectiveness, but for most it seems like just another awareness campaign that makes no sense. Well, here’s a little insight as to why it is so very important!

Everyone has been in pain… everyone. Ok, there are some people in this world that have a disorder where they literally cannot feel physical pain, but it is actually very dangerous and they tend to hurt themselves quite a bit (like burning their hand on a hot stove) because they don’t feel the pain. But even they have felt emotional pain. All pain is relevant! Yes, National Pain Month is specifically for physical pain, Mental Health Month is in May, but that is not my point. Stick with me.

Pain goes so much deeper than just the nerves in our skin. When someone deals with chronic pain (and I mean 24/7, all day-every day), it is exhausting. It drains every bit of energy out of a person, and it often breaks down the barrier between the physical and mental pain receptors. This is why the majority of people that have chronic illness also deal with some form of depression and/or anxiety. The longer we deal with pain, the worse it can get. More people with chronic and invisible illness die from suicide than any other complication of their disease.

Pain awareness is more than just saying “Hey look, I’m in pain and you should be aware of that!” It’s saying “Pain is a serious condition and it needs considerably more research, we need awareness/funds to make this happen. My life is hard and I need people to know how hard it is, so that we can keep other people from dealing with the same issues I have.”

That is what pain awareness is, that is what it should mean. Let’s spread the word and make people sick of how much we talk about it! Let’s make sure people know that pain is not something to keep hidden. If you’re suffering and feel like you can’t talk about your pain because you’ll just be branded a “complainer”, now is your time to speak out! Make people aware of the fact that chronic pain is a serious condition that can impact every part of your life. No one should have to go through that alone.

So for September (and beyond), spread awareness and share how pain has affected your everyday life. Make the invisible, visible.

My Pain is Being a PILL!

***Fair Warning! I wrote this at 2:30 am… really hoping it makes sense!***

 

What happens when you think you took your medication, but might not have? Well, that’s a crazy question, because you’re meticulous about putting every pill in each days slot of the weekly medication holder, so why wouldn’t each pill be in each slot? Good question! One could deduce that a random fairy or gnome stopped by and noticed I had left Sunday mornings pill box open, so they decided to rummage through to find a……. ok I’m over making up stupid stuff. I messed up! Somehow I didn’t put my pain pill, my most important (well, to me) medication into the Sunday morning slot in my pill box. When did I notice this? Sunday evening when I could barely move the pain was so intense. I had chalked it up to the weather being bad, which does usually set me into flare mode, but this was different. By night I was shaky and my temp wouldn’t regulate, I knew that feeling… withdrawal. I hadn’t had my pain pill! What the holy hell! It was time (anyway) to get my pills set out for the next week, so I got started on that and took a pain pill (which I don’t usually do in the evening, but it wasn’t a “usual” kind of night). After making a 1000 percent sure every pill was in every slot, I took my evening pills and prayed that I could get to sleep at a decent hour. That was at 11 pm, it is now 2:30 am. Now, just to give you an idea how bad that is… I take multiple sleeping pills and supplements that are supposed to knock me out because of my terrible insomnia. Still awake.

People get on my case for how many prescriptions I take, but what they don’t understand is that those meds are the culmination of the research that companies have put into that which I am suffering from. Yes, there are side-effects! Yes, I take that risk upon myself when I take that drug. Yes, I would prefer to have anther viable alternative (but as of right now it is not legal in the state I live in). So, for now I will do what my doctor tells me to do and take my 15 prescription medications and 7 vitamins/supplements that I know based on research have helped some people in my situation. I will not reduce myself to snake-oil because it “cured” a bunch of people (which is a statistical impossibility). I can’t help being a realist, it’s just who I am. I look at things how they are, not how they could be. So, how things are for me… I need these medications to function on a daily basis. If I do not take them on a daily basis, I cannot function.

Like today.

On a Personal Note

Most of my blog posts are about awareness for invisible illness, social acceptance of disabilities, food allergies, and so on. But it is also important for me (as a person) to just let everyone know how I’m doing and what is going on in my world. It is very possible that this is arrogant on my part, but it’s my blog and I can do what I want. 🙂 Just kidding, kind of.

Well, I had a follow-up with my new Rheumatologist yesterday and sure enough, I do have Rheumatoid Arthritis (possibly Lupus as well). Some of the tests for Lupus were inconclusive, but everything for RA came back positive. They’ll be keeping an eye on the Lupus, but going forward with RA treatments. As for the Ehlers-Danlos diagnosis, I am still waiting for that to become official. She agrees that I “most likely” have it (I know I do, and I can tell she does too, but just won’t say it). She is insistent that I get genetic testing before she can move forward with an official diagnosis, even though I know that H-type does not show up on genetic testing and may not be covered by my insurance (we’re still working that out). Mine is a typical story though, one I’ve heard over and over on-line. People go years without a diagnosis, just to have every doctor shoot down what they KNOW to be true.

That’s one of the main reasons I’m doing what I’m doing! People just don’t know how devastating it can be to KNOW you have this debilitating disease and still have doctors question you. Just because we’ve sought help and answers on-line, does not mean we’re hypochondriacs. Just because we’ve spent countless hours researching symptoms, does not make us obsessive. Just because we’re relentless in our pursuit of a diagnosis, does not make us pushy patients. If we don’t stand up for ourselves, we eventually won’t be able to stand at all!

Ok, off that soap-box (for now). The other big thing that came out of my appointment was a prescription for mobility assistance. Yep, I’m getting a scooter! Not something I will use all the time. I have every intention of keeping attempting to walk for as long as my body will allow me to, but recent activities have been extremely difficult and kept me bed-ridden for days. So, when I told her about it, she agreed I needed that option. I have people coming to my house at some point to asses my mobility needs… yippee! Come see my messy house that I can’t clean because I’m sick! I have blankets I can throw over stuff, that will work, right? The other important thing is that my temporary handicapped placard is being upgraded to permanent. No more renewals and begging for a new one. No more waiting months for doctor visits and having him tell me that they really should just go to people that “really need them”, just to have him reluctantly write one for a couple months because I’m in extreme pain. Justification… I have to say, it is sweet.

Some other (smaller) things to come out of the appointment would be that she took me off of a med that was probably the cause of some severe dizziness. At one point this past week I actually had to be helped out of church because I almost fell over, fun times. My Sjogren’s isn’t getting any better, but we’re going to see how things go once my other treatment starts. I have to get a few immunizations before I can even begin the infusions for the RA. She also gave me steroid injections in my knees, which hurt like CRAZY! I’m hoping it’ll be worth it, because the next day it still feels like the needle is in there! Ugh.

I do have one other big “story” to tell, but I’m going to do so in a separate post. It was a pretty upsetting situation and I have had to collect my thoughts in a big way before posting about it. But no worries, you’ll get the full story very soon! For now, I wanted to give you a little insight into how things are going for me. Other than a very stressful situation (again I’ll post about that later), things are not too bad. Getting a diagnosis is always bitter-sweet. Knowing what’s wrong is always good, but finding out how they’re going to treat you can be daunting! Changes in medication, infusions, steroid injections, all kinds of “good times” ahead. I’ll make it through, I always have and I always will. For now, God bless and have a wonderful, pain-free day!