Rotting from the inside out

The only place some of us can feel normal and not in pain is in our dreams. It's a sad reality but a reality for a lot of us that feel like virtual prisoners in bodies that are horribly broken and doctors who do very little to help. I recently got a second diagnosis that my bone disease had spread further. It had spread to my ankle and my Talus is in collapse. I can't put any weight on my foot. Don't forget can't put any weight on my hip because I am in stage 4 collapsed and my hip is collapsing. I feel like my body is an old house that is falling apart and the house is on fire. Different areas of the house are on fire at the same time so you really don't know which way to run to avoid the fire or what is the safest path to get you out alive.  It's hard when you feel like a prisoner in your own body. No one knows what to tell you when you tell them that you have a degenerative bone disease that is basically eating you alive from the inside out. You hear a lot of wow I'm sorry!  gee that sucks.  I mean what can people really say when you are wasting away before their eyes. You become a spectator of life. Watching from the sidelines. Everyone experiencing the things that you've only dreamed about because you can't move and every step is agony. And then there is the frustrating task of trying to get relief from the pain that haunts you and keeps you awake morning noon and night. Doctors won't hesitate to prescribe you medicine that might kill you or leave you with side effects that will cause a lovely slew of other problems. But give you something that might actually improve your quality of life? No sorry out of the question. You might become addicted even though you are in chronic pain and what you currently take doesn't even remotely touch your pain. Oh by the way have you tried ibuprofen? But don't take too much because that has its own set of side effects that will also ruin your life. It is an endless frustrating Circle that leaves you asking the question to those that are supposed to improve your quality of life then what do you expect me to do?  All you ever hear about are the people addicted to the opioids and the pain meds. And I'm not downplaying any of that however there is another side to the opioid epidemic that no one talks about. What about the chronic pain patients? The people who legitimately need pain medication to just get out of bed in the morning and be able to function and do the bare minimum. What about them? Virtual prisoners in their own body. Reliant on a system and constantly living in fear that you won't get your medication that you need to function and live your life. I will use myself as an example I literally have two collapsing joints as we speak. What I take currently is the equivalent of taking a placebo that does absolutely nothing. First I get told to take Ibuprofen then I get told don't take too much ibuprofen. So what is the solution? Why are we as chronic pain patients constantly dismissed and told our pain is not that bad. Pain is a subjective thing. Meaning you cannot see it. And for medical community who has based their entire existence on the things you can see, I think how they operate when it comes to controlling someone's pain is something they are still seriously lacking in. Because I can honestly tell you from personal  experience I can stand in front of you being an excruciating pain and I am an expert at wearing the mask of I am fine and I can stand there and pretend like I am not in pain and normal. Masking at its best from Decades of telling people I was fine. When in reality I was the opposite of fine. I didn't learn how to advocate for myself or give my opinion on my own Healthcare till later than I should have. In the early years it was do whatever you have to do to save my life. These days I want a say in what happens to my body and you can damn well bet I'm going to have an opinion about the treatment plan. When I started this journey with the new ankle addition to the bones disease, the first person that treated me said something that I hadn't heard in quite a long time in healthcare. That you treat the whole person not just one part. That is what is missing today. Treating the whole person and also not treating them like a cash cow. Until Healthcare can relearn how to spend time with patients and get to the root of the problem. Instead of ushering them in and out of a turnstile to see how many people you can see in one day to make as much money as possible. Only then can we get back to treating the person as a whole person and not as a giant dollar sign. Chronic pain patients need to be heard and we need to be treated as people and not have our pain dismissed by people who do not live in our body. Who make decisions about you based on a 15-minute visit where they see you every 6 months. We deserve to be treated as human beings who happen to have bodies that are failing us and working against us.  Not like hampsters trapped in a game of healthcare monopoly. 

RIP to who I used to be

This month will make 25 years since I was diagnosed with lupus. Also in that time frame came diagnosises of Avascular Necrosis, Fibromyalgia, Raynauds, and a slew of other fun diagnosis in the process. I'd like to sit here and tell u after 25 years you get over all the medical trauma that you went through and u embrace the new you you've become. But that's not how it goes for everyone. Thats not how it went for me. There's still things from the early days that Im traumatized by.  I was still a kid when this started. A kid making adult decisions about a disease I know nothing about, and at that time neither did the doctors.  Decisions that would have life long impacts and later being told well we did what we had to do at the time to save your life.  Getting diagnosed with a chronic illness changes the whole tradjectory of your life. I still mourn the me that never was. The person I could have been before my life changed forever. I always wonder what great things she would have done in a body where she was free to take on the world.  One of these days i will share my diagnosis story. Thats a story ill share with time. I don't really remember being pain free or life before lupus. Life is in flashes from that time period. They say that happens with trauma.  Its faint memories since I got sick so young. For others, they got sick later in life and remember life before an illness completely sidelined their life. I don't think its something you ever get over. I think you just get used to living in a body that runs like a bad car. One that's been in multiple car wrecks and is running on fumes and a prayer.  After so many years I feel like i should be an expert.  I still dont have all the answers. I wish I did. There's no guidebook to chronic illness how to deal with it or how to live with it.  Every day its get up, put one foot in front of the other and keep swimming. You either keep swimming or you drown.  Recently had someone ask me how do you do this every day? Meaning function with my conditions. To be honest with you I kind of looked at her like she was crazy. I just responded with honesty and told her I had no other choice. I did whatever I had to do to make it in life. I recently got dealt more bad news as far as my health goes I am not ready to share it publicly yet but it's definitely another blow. I look at it this way you have two choices in life give up or give it all you've got. At some point in my life I've wanted to do both. There were many times I had no idea how I was even going to put one foot in front of the other and get through the next moment let alone the next day. When you're chronically ill a phrase you hear a lot is you are such an inspiration. I promise you when we became sick being inspiring was not something we all initially wanted to be. I remember just wanting to be normal. Not inspiring just  normal. Go on my senior trip, go away to college and just live a normal life like everyone else. But I didn't get the normal life and that's okay. Because if somewhere along the way I can be inspiring and be someone else's guidebook to chronic illness then I've done my job. Good, bad or otherwise you play the hand you were dealt. There is no magic guide book. All you can do is just keep swimming. 

Out of Sight Out of Mind

I was recently asked to speak at a function about the anniversary of the ADA and why it is so important for people with disabilities. I had to turn it down for multiple reasons. #1 the surgery. #2 I dont think my style is what they are ready for. I tend to come out with guns blazing and pulling no punches and telling it like it is. Like that line from a few good men where Jack Nicholson is screaming you can't handle the truth. Yea...thats me. I tend to ruffle feathers. Not give the warm and fuzzies people like.  I've never been a well behaved woman who kept her mouth shut and don't plan on starting now. So yea. Why is the ADA important?  So people with disabilities are given equal opportunities to our healthy counterparts.  July 26, 1990 the day the Americans with Disabilities act was signed into law. Up until that point people with disabilities were considered second class citizens. A group within society that was once institutionalized just because they had a physical or mental disability that they had no control over. Getting a disability is like a roll of the dice. It can happen at any time to anyone.  Disability doesn't discriminate in who it affects. People with disabilities wanted more than to be locked away from society and forgotten and Out of sight, Out of mind. They wanted to be seen as more than their disabilities. Seen as people with dreams to be produtive members of society and treated with respect.  But from the outside for centuries people have viewed those with illnesses as pariahs. But we are so much more than what society has and still does think of us. Some of the most amazing people I know are the ones who have had horrible physical roadblocks thrown in their path. The ADA has helped people with disabilities a lot. But there's still a lot that needs to be done to help people with disabilities live their best lives possible.  We are a long way from claiming victory at the top of the mountain. When employers finally treat employees with illnesses as an asset instead of an inconvenience then we will have victories. When we have more accecessability options for people with all disabilities. More wheelchair friendly access to things,  more options and accommodations for everyone who just need a litte extra help in life to participate in life because they weren't delt a fair hand.  

But have you tried ibuprofen?

Greetings ladies and germs so much for being a consistent blogger!  Sometimes life happens what can I say? I took a break from blogging to focus on my health. Sometimes it just starts to backslide and you have to step it up in the game of my body is a raging shit show. But what else is new right?  So my life became a revolving door of doctors. More like interviews since you never know how in the world that will go. Will they be an asset? Will they try to kill you with their nonsense, or just flat out think you are crazy? Its always a roll of the dice. So after feeling like i saw every specialist this side of the Mississippi I finally found a team that works. It took lots of google skills and persistence to find people that fit my needs but i found them.  Then it became a matter of  addressing the things I had ignored for decades because I was in survival mode and there was no time to take care of myself. Just keep swimming and try not to drown. Since this time last year my hip has since collapsed and in a few short weeks I will become the bionic woman with a new hip. Never thought I'd become a real life terminator but here we are. It became harder and harder to mask the pain and pretend I was fine when internally my bones were screaming at me because they were rotting from the inside. I have lost count of how many times I've pretended to be fine to outsiders but internally I felt like I would collapse and my bones would snap right there from the pain.  Yay for Avascular Necrosis, fun times from steroids. I eventually gave in and started using a cane and put my pride on a shelf about using one.  First I bought a leopard print cane, then a shiny purple and gold one. If I absolutely had to use a medical aid it was going to be cute damn it. Now if only someone would improve the look of hospital gowns. Any fashion design companies wanna look into that one? Walking around without your ass hanging out would be nice. Depending on who you ask. So I got a cane, a new team and am playing the waiting game until I get my new hip. But a date is set and the count down is on. Its been amazing to me what ive heard in the past year from doctors as far as medical advice that was supposed to pass as helpful. I heard the usual. Have you tried exercising? Why yes i have but it renders me unable to walk at all for 2 whole days. Have u tried losing weight? See response above and also I eat pretty healthy. Just cant move because my hip is in constant pain. Then my favorite. Have you tried ibuprofen? The over the counter band aid for everything. Its the medicine version of have you tried turning it off and then back on again? Sometimes it works sometimes it doesn't. Kinda like the rest of my body. I'd be lying to myself if I didnt admit how bad the pain is some days. Most of the time in a medical setting your pain is measured using a smiley to sad face graph. Which for someone in chronic pain is a frustrating scale. Explaining to medical staff that well my baseline pain is a 7, flare day pain is an 8 and doing any activity past my usual is an automatic 9. Wanna see their head spin around like the exorcist? That's the way to do it. But these days the pain dictates my life and what I can and cant do. I will stay off my soapbox about the headache and taboo that comes with asking any provider for pain relief. It is generally met with hesitance, a speech about addiction and have u tried ibuprofen? Oh and yoga.  I think I speak for a lot of us in chronic pain when I say. We are looking for general relief from pain that is with us morning, noon and night. A constant reminder of bodies that are pushed past their limit and most of the time the limit being the absolute bare minimum before the pain renders you immobile. To say I am beyond ready for replacement surgery is an understatement. Im sure that in itself will present a bunch of new challenges.  But you gotta do what you gotta do to make it to the other side. I look forward to the simple things after replacement. Walks with my partner being number one.  Right now every step takes everything I have and is met with waves of pain as I wait for my surgery date. But hopefully brighter days are ahead and many beach walks with my partner are in my future. And just like Nemo we just keep swimming.