Putting My Foot Down (is extremely painful).

*Warning- Venting Ahead*

Have you ever said “It can’t possibly get any worse than this.” then it gets worse, like way worse. That is how much pain I’m in. I seriously didn’t think it could get worse, but it can, and has.

Something is going on with my right foot. The top of my foot is in a constant state of flare. I made the image above to show the general pain area and how I feel. Just add an elephant stepping on all those knives, and we’re almost to the right pain level. Thankfully it isn’t in that state ALL the time, but it is anywhere between a 7 and 8 at any given time (10 for really bad flares). When you legitimately consider cutting your foot off, you know there is a problem.

My doctor thought it could have been a hairline fracture, so I had an x-ray… nothing. I’ve got an MRI scheduled, but I have to wait another week and a half since I got a new tattoo recently (apparently that is a big problem). So, for now, I just take very strong pain killers and hope for some relief.

I’ve also bought a “boot” to keep my foot as stable as possible. It helps, as much as anything can. I’m able to walk easier, but I’ve had to use my wheelchair more often than usual. I had to do something, I missed over a week of work and I could not afford to miss any more.

In other news- I got the results back from my genetics test and have an appointment tomorrow to go over them. Over the phone they did tell me that I definitely have the gene associated with EDS, so getting that (official) diagnosis will be a huge step forward for my treatment.

I’m also meeting with a Social Security Disability Attorney to go over my options for filing for disability. I should have done it years ago, but I was just too determined to keep working and not allow my conditions/pain to control my life. Well, I’m to the point where work is a huge trigger for my pain. I’m sure I’ll do a whole post just about the SSDI when I know more about my case.

So, that’s what’s going on in my world right now.

I hope everyone is having a wonderful, pain-free day! (((gentle hugs)))

Changes, Challenges, and Resolutions.

It is finally a new year and that means New Year’s Resolutions. But for some people (a lot of people) they are extremely difficult. This is so much more than the typical “lose weight” or “save money”. For people with chronic illness, a new year can mean a whole new year of challenges. Our resolutions often combine the typical with our own brand of unique pleas for a better life.

For those of us with “moderate” pain (I am in NO way making light of any level of pain), a resolution may be simply to work out more so our symptoms don’t get worse. For others of us with more progressed symptoms, we may resolve to look for alternative options that allow us to keep moving with as little pain as possible. But even those things just scratch the surface of our wish lists for the new year.

I know for myself, something has to actually change! I’ve been doing my resolutions a little differently the last few years and (even though my physical body hasn’t agreed with my choices) it’s been a big improvement over the typical set of lists people make. I look at the things in my life that I need to change or adjust and I write down what those things are, then look for consistencies in the list. What is it that I really need out of my year? Last year I noticed that I wanted to eat less, spend less, and so on. So I focused on it being the year of “LESS” in my life. For the most part I did… ok with it. I could have done WAY better, but I won’t get down on myself (that’s not how this works). This year when I really thought about my needs, I saw another very interesting pattern.

This year I need “MORE”. I want to be more active in my kids lives, write more on my blog, make more money, be more available, etc. So, I am letting it be known that I am stating my resolution for all to hear, and that I am going to do more this year. More for myself, more for my family, and more for my community.

I encourage everyone to find that one thing that you need this year. Maybe it’s wisdom. In life, work, with your doctor, etc. Maybe it’s strength, or care, or faith. There are so many possibilities! If you need some more examples and have questions about the origins of the My One Word resolution, check out the website myoneword.org. It has helped me a lot!

Now, in the spirit of sticking to my new year’s word… (I usually HATE doing this)… I’m going to put my gofundme page back up. I’m trying to be more upfront and honest, I can’t do this on my own, I need help. Ignore if you like, I’m just trying to practice what I preach. https://www.gofundme.com/2htvauy4 Thank you!

It’s Been A While… and I’m Struggling

I haven’t written anything in about a month, because I’ve struggled to find my words. I’m still having a hard time, so please hang in there with me and I will do my best.

The day before Thanksgiving I got a letter from my insurance telling me that my electric wheelchair had been declined. This was a huge blow to my progress and to my emotional well-being. I’d been going back and forth with my doctors office and the supply company trying to get that chair before the end of the year (out-of-pocket met). To get a denial after months of waiting, was a kick in the gut. So, now I have to appeal and start the whole process all over. I know that it is very typical, and I’m not alone, but it’s still devastating.

I also started my IV infusion treatments for the Rheumatoid Arthritis. Some things about it were expected, others were not. I knew I would be tired and sore, but I was still unprepared for just how tired and sore. I was told it would take five hours, when it actually took seven. I did not know I would have to have my blood pressure taken every half-hour, which is one of the most painful things ever for me. I left there with a huge bruise on my right arm and unable to even lift my left. I was grateful there were kind people there that are good at their jobs. They took good care of me, and understood when I had to get up to go to the restroom about ten times over the course of seven hours. I was pleasantly pleased to have a large screen TV and Netflix that kept my focus away from the pain in my back from the uncomfortable chair. Four full-length movies later, I was done and my husband took me home to rest. I was unable to sleep due to the pain, even though my whole body cried out for it. For days my arms hung at my side like bricks, I had to take off work and could barely lift a glass to drink water. I’m also starting to lose my hair. I knew this was a possibility. Its been a while since I’ve dealt with major hair loss, it’s one of the reasons I’ve had to chop my hair off (I used to have very long, gorgeous hair, now it’s a pixie cut). My last shower, the tub was covered in hair, not encouraging.

I’m still hopeful these treatments will relieve some of my pain, I just wish the process weren’t so destructive. I have another treatment in a few days and I am (obviously) not looking forward to it. The worst part is that it will be the day before Christmas Eve. Which means (based on the experience from a last time), I will be very little good to anyone over Christmas this year.

I have a tradition every Christmas (every since my first was born 14 years ago), to stay up and wrap gifts while watching A Christmas Story on Christmas Eve. Then arrange the gifts under the tree for the next morning. Over the years it has taken me longer and longer to complete this task, as my pain has gotten worse. But it’s something I enjoy doing, so I make it work (and I get the watch the movie several times, so that’s fun). I save up my spoons and use them all on that night. But not this year. I have to be practical, I just can’t do it. I’m going to wrap the gifts on Thursday, the day before my infusions and on Christmas Eve watch the movie while I lie on the couch, watching my husband set the gifts out. Maybe I’m wrong, it’s possible I’ll be okay. But I have to be realistic and when I look at the facts, I will be out of commission.

Another big stress in my life right now is work. I wish I didn’t have to work, but I do and that is that. I’m at a place now where the person I work for is actually very understanding and accommodating, but there are still outside factors that are pushing for that to change. It is upsetting and my anxiety level triples when I’m confronted with it.

Then there’s the weather! I live in a cold climate… for now. Where I live there are amazing schools, it really is the only thing that has kept us here. My son is Autistic and does much better when incorporated in a regular class, our school district is one of the best in the country for this. They’ve bent over backwards to accommodate his needs and make sure his education comes first. That being said, I am SO over living here!!! I need to be in a warmer climate. My body is screaming and begging me to move. I need to be in a place where there is little humidity and less extreme changes in weather. I used to live in Texas, but the allergens there were horrible for me (even though I love the Hill Country and would move back there in a second if it weren’t such a huge problem for me). So, we’ve talked about moving as soon as both kids have graduated high school, probably to New Mexico or Arizona. Our youngest is in 5th grade… there are times (like right now) that I feel like I’m never getting out of here!

I’m sorry this has been such a negative post! As most of my readers know, I always try to add at least a tiny little bit of positivity into everything I write. Right now I’m just in a lot of pain and having difficulty communicating any semblance of strength or inspiration. I will say this though, I did see the new Star Wars movie! It was really, really good. 🙂

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.***

Warning… Spoon Shortage! Enter at your own risk!

Anxiety is a a$$h@le!!!

That may sound really weird to people who don’t suffer from chronic anxiety, but those of us that do will get it. Sure, everyone gets anxious. Everyone feels that pull of suspense that only comes from being terrified of what might happen. But for those with chronic anxiety, it is like a living being that squeezes the very life out of those that experience it day to day.

One of the biggest struggles for me this year has been my overwhelming restlessness about everything going on in my life and around the world. That may sound very broad and maybe even somewhat whiny, everyone is apprehensive about world events. I’m talking about the ingrained need within myself (and so many others) to fix/control things. These are thing I cannot fix! I can do my part. I can  advocate for people like myself, I can vote, and much more. But what cannot do is control the outcome, and it drives me crazy.

Many people with chronic anxiety are considered “neat freaks” or “OCD” (which is misleading, because Obsessive Compulsive Disorder is it’s own thing which anxiety can often be attached to).  We want to be able to keep our “world” in a little bubble and defend it from anything that might make it pop. Unfortunately, that doesn’t always work out too well. Ok, usually doesn’t work well at all.

This approach keeps us at a constant state of readiness, a perpetual tension that can be torn apart by the slightest change in our environment.

For me this includes a plethora of medical changes, worry over my sons health (it looks as though he may have a similar condition to me, on top of his other problems), worry over the rest of my husband/daughter’s health, and strained relationships with friends/family. On a global and national scale, I’m sure my concerns are similar to everyone else.

The election (both for President and my local races) has been so polarizing! I can’t get on any social media without seeing attacks from both side of the aisle. I see family members supporting hate, I see friends attacked for expressing their views, I see stories of harassment, and just the worst of mankind (this does not mean just men, it encompasses everyone). I’ve had to unfriend and/or unfollow far too many people this past year!

I’m very thankful it will be over soon, but I recognize that this election has forever changed our society. We’ve seen each other for who we are, the dirty underbelly of politics has exposed the reality we have kept hidden for years. Our fears and prejudices are out there for all to see, no matter which candidate we support!

But it’s not just politics that have me breaking apart from the inside out.

Hate seems to be a way of life now, and it terrifies me!

There is so much hate for law enforcement, African Americans, Hispanics, refugees, even victims of crimes! Where have we gone wrong?! Why is our automatic response anger? Why do we immediately gravitate to the worst possible action? Hate and fear are in control, not reasoning and compassion.

One of the biggest contributors to my extreme anxiety breakdown has been the stand-off at the Dakota Pipeline. I am part Native American (which a LOT of us are, but the side of my family it comes from has an amazing history and I am passionate about preserving it), so the desecration of Reservation lands really hits home for me! If I could physically and/or financially afford to be there protesting with them, I would! I’ve signed petitions, I’ve checked-in, I’ve shared, and I wish I could do more. Just thinking about it makes my heart hurt.

Another source of anxiety for me, has been accepting my physical limitations. In the summer I took a trip to see my sister, niece, and nephew (and great-nephew). It was extremely difficult. I miss them beyond words, and it was my first time meeting my nephews beautiful son. But I realized that travel was just not in the cards for me anymore. Or if I do, it will have to be with significant assistance. I can’t just hop in a car and drive 12-14 hours anymore. I can’t go to the beach and expect to be able to walk the next day. This is my life now, no matter how much people doubt that reality.

This fact hit home this past week as my niece married her long-time boyfriend (that I had finally met when we went to visit this summer). I couldn’t go and it’s eating me up inside! I’ve always had a special bond with her, even across the miles. I desperately wanted to be there, but I just couldn’t.

I am also very nervous about the infusions I am starting next week. I was supposed to start them a month ago, but miscommunication regarding what vaccinations I needed before treatment pushed the time frame back. I desperately want them to give me some relief, but the realist in me is trying to keep me grounded.

There’s PLENTY more things I could write here, but I think that’s more than enough to get the big picture.

My post really isn’t just a huge vent (even though it is a perk), this is a confession that people with anxiety are not just stressed. We take everything going on in our lives and internalize it. Our struggle is more than just day to day dears, it is an all consuming ball of fire that lives in the gut and engulfs us when the world closes in.

So today, I will breathe and hope the fire subsides.

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.