Dear self, as you sit in uncertainty

Know this is not the end. 

Know with certainty that there is more. 

Know that for every bad person you encounter, there are 5 supportive ones.

Self, do you not see the warrior in the mirror? Do you not realize you are enough? Do not let what once was consume and encapsilate you. You are worth so much more than you’ve ever been led to believe. Those who saught to bring you down with the blade of their words know nothing of your strength. They don’t realize you can overcome this without them. In fact, they’re counting on it. The best revenge is success. Happiness and a lack of care to those that would tare you down.

I cannot always be happy,

I cannot always smile,

Sometimes I need to hide away for a while.

I cannot always dance so that others feel ok, 

I haven’t the luxury of time to live my life that way. 

I cannot always get up,

Can’t meet you at the mall,

I have 10 prescriptions to take but I try not to feel small.

I try not to feel crushed by the pressure and to keep my head afloat,

But sometimes I really want a tower protected by a moat.

People are always more comfortable when I wear a smile and joke, so much so that they expect it, and treat me differently when I don’t . Maybe I am having a hard time and maybe that gets in your way. Makes you question your own mortality. Makes you wish I would go away.

But news to you, I can’t be her. This perfect woman in this perfect box. Sometimes I need help too, and sometimes I need a lot. It’s emotional support and maybe some of your time. That’s just for me. Sometimes I need to cry. I will rise up, much as I always do, just wish people could understand....oh how I wish they knew....

Copywright: Victoria L Weter

2018

The SIJ and Insurance war!

Most people don't think about their SI Joint (Sacroiliac Joint-SIJ) but everyone has one SIJ on each side, right and left. More often occurring in women, one or both of those sides begins to experience dysfunction known as SI Joint Dysfunction. To put it mildly, it's a pain in the butt. Literally! Imagine that someone put a knife in your back to one side of your tail bone. Now imagine it's stuck there and you can't get it out. Every time you try to walk or put pressure on it, you are met with excruciating stabbing pain that stops you in your tracks. Suddenly you can't walk unassisted, if at all. You can't sit for long periods of time. Your heating pad is so much your best friend that you have burns on your back from it. You do everything you can to ease it. You attend all types of physical therapy (aqua therapy, traction, core strengthening). You go through every outpatient option that you have (Nerve blocks, Steroid injections, Radio Frequency Ablations), and though some of these methods work for some time, none are permanent in nature. You're simply buying time until your SIJ gives out again and you wind up back on crutches or bound to a wheelchair all while your legs and spine are actually still functional. You just can't stand the pain and sometimes the entire joint gives out and you can't walk on one side, or both, at all. You try to sleep but every position is uncomfortable to the max. Sometimes you just lay awake, scrolling through articles, looking for a solution to your pain.


And then one day! One glorious day! You find out about the SI Joint Stabilization surgery, but you also find out that your insurance will not cover it. So you wait, and you wait, and you wait. Until two years later you find out, supposedly, that your insurance company has decided to provide 'positive coverage' under some stipulations, for this surgery. You are sure that after the last seven years, that there is NO WAY you could not be approved for this surgery, but then...on your birthday you receive your first denial. You're crushed. Mostly because you weren't expecting it, and it hits you like a ton of bricks. You're emotionally buried under the rubble of your disappointment and frustration.


So you seek out the assistance of the SI Bone Patient Advocates. SI Bone are the creators of the Ifuse system for the fusion. Basically, laproscopically, through a 45 minute minimally invasive surgery, the surgeon drills three holes in the affected SIJ, and then implants three titanium rods into the spaces and the body does the rest. You fuse, and within a year or less, you stand a good chance of being as close to normal as you've ever been, or, BETTER! That's not to say that the fusion doesn't work for some. You are aware of the risks, but at this point, you're in so much pain that you just don't care anymore.


So, knowing that there is positive coverage, the doctors send in for the predetermination and you are shot down. The insurance company, whom we shall call Purple Cross, decides that because you suffer from Ehlers Danlos Syndrome, that you may not qualify for this life changing surgery.  They also note your instance of fibromyalgia which has been deemed to not be a factor in this area of pain. The surgeon even advises them that it is well controlled with medication and is not severe enough to consider a factor. Still, they fight back. It is here when you begin to envision them as some evil mega power conglomerate. They are sitting in leather chairs, smoking cigars and laughing at all the sick people they're not going to help this year. They pay no mind to you, or the appeals or complaints that you file. They still go home and dive into piles of money like Scrooge Mcduck in his vault.


These advocates though...they are amazing. They call and speak to you for hours on end and keep attacking back at the insurance trying to push approval like a Trojan horse banging on the gate to the castle of approval. And so you wait. And waiting is the hardest part. The insurance takes their time reviewing. You have to wait yet another thirty days for them to decide if you are worthy enough to be healed. This has been my life for a while now. I've suffered from SIJ Dysfunction for around 7 years and am currently in and out of a wheelchair. I'm braced up, taped up, and equipped with ergonomic crutches. There is a heating pad at my desk, and CBD oil in my medical bag. I've tried lidocane patches and pain killers and NOTHING touches this pain that my insurance seems to be so casually ignoring. Under their instruction, we even repeated diagnostic injections and provocative maneuvers. A provocative maneuver is where they position your body to replicate the pain. I've shown positive to all testing for SIJ Dysfunction and I am one of the many being denied, for what seems like, the sake of being denied.


I recently spoke to someone who was post op one year. She is doing great! She also had to wait through three painstaking appeals, one of which was an External Appeal that finally got her approved. I'm looking forward to this but it seems so far off. It seems like it will never happen. But I know when things seem darkest, is when I must keep my eyes on the light. There is an end to this. This will happen, but it's going to take more strength than I've had to muster in a long time. It's pulling from all reserves and wasting all of my spoons. In short, your spoons are your energy and your warned not to waste all of your spoons, but I've been left with no alternative then to fight. Because in the end I'm fighting for my life. For the quality of my life. I'm not sure when insurance companies began to think that they know more than medical staff, but I hope in time this is not the case. I know I'm being fairly optimistic, but they say that the only constant thing in life is change. So change is coming. It's just a matter of when and if I'll be strong enough to face it. Mark my words...I plan to be.

What do you do, when people don't believe you?

Many chronic illness sufferers go through similar experiences where you may feel that you need to act or look a certain way to be believed.
There is one thing that outsiders just don't seem to get...
We're not faking being sick, we're faking being well.
Just because we wear eye shadow one day doesn't mean we are feeling better. Sometimes we just want to look better than a trash panda.
Just because we wear a nice shirt once in a while doesn't mean that we are cured. It means we still didn't want to look like a trash panda.
Just because we manage to make it outdoors sometimes doesn't mean that we are Munchausen's patients. It means that we also need sunshine and vitamin D like everyone else on this planet, and maybe we just want to live as close to a normal life and not...you guessed it...like a trash panda.


But even though this information is already out there, we (chronically ill) still face people both in and out of the medical community that pass premature judgment or judgment based on only their perception.


What people don't get is that every time you pass that judgment directly to the ill person, that it does way more harm than good. These are warriors who've already had to deal with their fair share of pain, embarrassment, and exhaustion explaining and proving themselves to other people. I'd like to say I've adapted and it doesn't hurt anymore to hear...but..I'd be lying. Every time it happens I'm equally frustrated and hurt. And talk about anxiety! It makes you feel like you need to do more or something new or print off things or start a public blog (just for example).


But then you start to wonder...why certain people go through this and certain people may not. For example, for those with a more visible illness. Usually if your leg is broken and your casted, no one thinks anything differently (well...usually). If you wear makeup, people have no doubt that your leg is still broken. If they see photos of you outside, they don't think you snapped your leg yourself or think that you're wearing a cast for sympathy. They understand that your leg is broken.


For a person like myself, we have braces and things that we wear intermittently and this is where the human confusion comes from. For an EDS patient we may be up on our legs one minute, and trapped in a wheelchair or bed the next minute. All it takes is one movement. It can even happen while sleeping. You roll over and BAM! Your sternum subluxes and your ribs pop and you feel, in those moments, that you're going to puncture a lung! But you figure out what to do over time, get things stable again (if able), and go about the rest of your day whether it be resting or taping yourself up so you can get to work. But people don't see all of that. They don't have an open door to your life. All they see is what you present to them.


I've long since stopped wearing any kind of make-up or jewelry to physicians apt. (well for the most part). I currently and finally have a really good doc that doesn't ask why I've worn or haven't worn something. He seems to understand that the symptoms change and one week maybe I'll be braced up and one week maybe I won't need them as much. I'm thankful for this and I wish others would follow suit. Sadly...that seems too much to ask for.


I'd like to imagine a world where these words worked miraculously and changed the hearts and minds of society but....I'd be fooling myself. There are some things that will just be until society comes to a deeper understanding of these issues. There is so little coverage of some of these disorders. Not all of us have the exposure to have a day, week, or month dedicated to our conditions. Though we wish we could. For some of us that do, it's still not widely known enough to get enough exposure to the public. It's usually just another post they scroll by.


Now this doesn't make them evil people. It just means they don't understand. In truth, there isn't a way for them to really understand. Until you've had to walk it, how could you possibly really grasp it? The truth is you can't. You can empathize. You can be supportive, but you may never understand the day to day that some people have to face. Where each day that they rise, it takes almost every ounce of their energy to get up and roll out of bed. When we say we are tired, we don't mean your typical run of the mill sleepy. We mean, we slept for 10 hours (either all the way through or intermittently with waking periods) and still wake up like we've only slept for 5 minutes.


I try my best to understand why people think the way that they do, or how things may look from an outside perspective, but sometimes I don't want to be a good person. Sometimes I want to scream at the top of my lungs and cry at these events when they happen. Sometimes I don't want to explain to another person why I do actually need my crutches and braces. Sometimes I don't want to feel as if I'm under constant examination by the public. Sometimes I just wish that a person would say...I've read about this and though I never knew about it before, I now know this is a real documented condition. I won't hold my breath.


There are some that really know what it means to be supportive. They don't pass judgment on you. They are just there for you, and when you talk to them they aren't harboring internal voices telling them falsehoods about you. They aren't afraid to be around you and they don't talk about you when you walk, hobble or roll away. They don't find it fun and entertaining to talk in a group that your not in, and put you on trial without your knowledge, pass judgments without your knowledge, and don't offer you the dignity of defense. They're like hungry, bored wolves stalking a slow moving target. They cackle like the Disney Hyena's in 'The Lion King'. They seem to enjoy watching you do everything. How you walk. How you exist. Waiting for a slip up so they can prove their false narrative that no one, let alone at your age, suffers in this way and they're going to prove it to the world.


I want anyone reading this to hear me loudly. "A Lion does not worry about the opinions of sheep" (George R.R. Martin). The sheep are those following the herd. They hear something that may be untrue and they latch onto it and absorb the drama like a sponge absorbing dish soap. They get a buzz. Some Seratonin from waiting until you are gone and making commentary that they are never bold enough to confront you with. Truth is that they don't actually care about the truth. They've set their sights on you like Robin Hood to a target.


Just remember that what they think, has nothing to do with what you have to go through. They are wrong and you know that they are wrong. You know exactly why they do what they do and here's the secret...usually it's because they have things going on in their own lives. You are the distraction. They don't have to focus on what's going on if they can shift the focus to you. It makes them feel as if their lives are at least a little better in comparison to yours. What they will find is that it is a very hollow way to live (well some of them, because some never seem to arrive at that conclusion).


I've spent years not knowing what was wrong and being told that there was nothing that could be done, or dealing with them calling mine and others chronic illness conditions out incorrectly. Like saying hypermobility is not painful. While it isn't for some, for others it is a pain that is present everyday to the point where sometimes we wonder if pulling off our own limbs would be preferable to this kind of life.


If you are reading this and you've been guilty of it, think for just a second about that other person. Really think about them, and then ask yourself this question....
Does your judgment of them make your life any better?
Do you realize that the person may be hurt by what you are saying and doing?
Do you realize that every time you present a false narrative about their situation, you are further adding to the stigma that they are already facing in droves. They don't need more party members in the peanut gallery heckling them.
Do you realize that you add to the struggles of these people with your voice and through the spreading of your message?
Whether you think so or not, your words do matter! You have an impact you make on the world whether you realize it or not.
Start thinking about how you want to leave this impact and how you want to be remembered as a person.
If this fails, just try this one simple thing for us...


At the very least....mind your own business if you have nothing constructive or supportive to add.


See! Easy, breezy, beautiful...Covergirl!

Patience is a virtue...that I still don't have.

SOOOOOOOO.... 'Victoria! How's that feeding tube working out?'
Self: 'Well Self....I would be happy to talk about it if it happened yet'


So what's happening here. Well we agreed on a feeding tube but getting it set up has proven difficult because you can't just go into a med supply shop and get everything you need and the internet has not furnished a lot of info. The biggest part is because I technically can swallow, the procedure goes down as 'voluntary' even though I've experienced steady weight loss for a bit now. I'm down to around 140 lbs.. I'm showing signs of being malnourished (low prealbumen and all that, around 16 last time we checked).
So what am I doing while I wait on supplies to come in? Forcing myself to eat which has been like trying to force something your dog tried to eat but your trying to wrangle it from their mouths. On my own, at the most, I can ingest around 1000 cals, but many days it's less than that.
Why?
Because...pain. fiery, burning pain in my gut lighting up like a really screwed up Christmas Tree. This is of course followed by either, extreme nausea, vomiting OR, my personal favorite, diarrhea OR really painful constipation.
So this morning, I'm catching up on my YouTube Christina Doherty videos. She is an EDS Vlogger that I follow and I ADORE all of her videos. They're really informative and have carried me from diagnosis to now.
So I cut my hair this week also. I look like a cross between Julia Roberts as Tinkerbell in 'Hook', and 'Alice' from Twilight. So I LOVE IT!
How goes the joint pain?
Not so much fun. Right hip feels out of place and hurts like a beast, Costochondritis is still flared up and raging, and my knees started to have some pain.
The worst thing is that I'm soooo freaken' tired sitting here! I'm sipping water because I really need hydration right now but what I really want is my Queen Memory Foam mattress, and SLEEEEEEEEEEEPPPPPPPPPPPP. I'm so tired, I envy Sleeping Beauty and Snow White. I'm so tired right now that I envy everyone who is currently sleeping instead of being up, working and writing right now. It's not even 9 a.m. and I already want to sleep. I want the land of Nod more than anything else on this planet right now. I'd say a favorite food but we all know how that would end.
This week I did get out of the house and even cooked a bit. I got out and went to, of all things, an arcade which wound up being a lot of fun and apparently I can still shoot zombies with the best of them, though apparently playing Tetris is still not a strong point of mine.
I also made homemade guac and deviled eggs! Now I could only have a small amount but seeing my hubby that happy was so worth the effort! He loves food. He gets this sly, half-smile of pure contentment around good food. Which, of course, made me feel like Wonder Woman! You laugh now, but with my energy reserves being this low, it's amazing I could stand in the kitchen for a couple of hours and get this done and not turn it into monster sludge instead of edible food. In the past, I'm pretty sure I messed up literally everything including instant oatmeal and mac and cheese. Now I ask you....who messes up instant oatmeal. Add water and milk. That's it! Not for me. I overflow it with milk or water and then forgo the entire thing, retiring to my room defeated to plot my next attempt.
At least the sun is out. It's very deceiving though. Kind of like false advertising. It's sunny but FREAKEN ICE AGE outside! I'm pretty sure I saw that squirrel from 'Ice Age' running around chasing the same nut that always eludes him until he inevitably sets off the next catastrophe. Someone wrap me in a parka and send me south. I'm done.

There goes that girl with the braces and chair. Hurry! Before she notices us! Feeding tube hooplah!

I'll start by saying that the title has almost nothing to do with this post (haha FOOl you)!
So today, I have to work myself up to finishing or near finishing one of my art projects. This week was filled to the rim with Doctor's Appts which includes a referral to Mayo Clinic. I've never been but my #1 worry is that what if I go all the way out there, and they don't know anything more than what we know in the ways of treatment? BUT what if they do know more? Then what will my life be like? What if I get back to some kind of baseline normal? I don't think I'd know what to do aside being exceedingly grateful. So far we've raised about $2300.00 which is amazing! It took the really hard work of my aunt Candace who is selling jewelry like a mad woman, all over the place and handing out cards and sharing my story. It's amazing and it's so wonderful to get to know her. Our family is a bit, segmented you could say. This experience, I feel, has brought us all closer and I'm even more thankful for that. My uncle Steve helped out greatly as well. It's amazing! I've started to hear from first cousins I've never had the chance to meet before. It's like the dream I've always wanted. More than anything, to have a closer family. Maybe this experience will spark regular contact with these people who share my lineage. I certainly hope so!
So what's with me? Well we are waiting on feeding tube supplies for which I will start overnight feeds. So what does that mean exactly? They take a small flexible tube called an NG tube, or a Nasal-Gastric tube. They feed it in through the nasal cavity (that's going to be uncomfortable), and it goes down into your stomach to essentially 'trick' your body into getting the nutrients. Without smell or taste, this may cancel out some of the nausea and lead to maintaining some of those calories going in. The feed is Ensure which, little did I know, can go through insurance under the right circumstances i.e. slowly starving to death.
What does this mean for work? Well, since it's just over night, the most people will see is the NG tube sticking out of my face. I read this post of a young woman who decorated the outside of hers with jem stones and I have to say, that looked pretty snazzy. Like what Lady Gaga would do if she had a feeding tube.
How's therapy? Going well I think, though she gave me a ton to think about. Listening more, responding less at first feeling, and looking at myself in more of a positive way.
It's been hard not to feel like a failure of sorts as a person. I can't contribute the way I would like, so I feel that I'm failing at that. And at being a mom. And at being a wife. And at being a friend. She's helping me to sift through the lies of what I consider truths. I'm hoping one day all of those thoughts snap into place and I remember that I didn't ask for this either and I'm doing the best I can with what I have. Sometimes I feel like this part is more difficult, than trying to fix the health issues. I know once I can walk again, I will feel more like an actual person and less like a blob sitting in a chair or bed binge watching America's Next Top Model (don't judge me!).
I'm at work currently, and happy to be out of the house. My husband has a cold so don't want any of that. Pretty quiet here, but at least the sun is shining through the windows (even if they don't open).

Health crap and more crap

😌So yesterday's developments are ordering what we need for the NG Tube (feeding tube) and hearing test results.
1. Malnourished.
2. Sluggish Gallbladder.
And just for a little extra element of surprise and fun...my hair is dying and falling out. Well hair isn't entirely alive per say, but you get my drift. Extreme damage from malnutrition=Mia Farrel from Rosemary's Baby coming to a Victoria near you this Friday. It's not what I had planned for my badassary, but I'll slap on some crimson red lip stain and walk...well rather roll around like a MF#$%# Boss!
Ok so maybe not quite like that, but I prefer the imagery to near bald female in wheelchair. My blog, my rules! Take a seat!
Ok, done with the sarcasm...or am I?
Moving on...I have three apt. this Friday including the hair execution. I have the last (hopefully) diagnostic injection that should last around 8-10 hours. So in short, I'm going to actually have a relatively good day. Next thing on the agenda is an infusion at my PCP which will take around 1.5 hours to which I will drift off to sleep and think of things other than infusions and injections.
I have a fun PJ day planned. Total lazy time with a friend that I'm totally looking forward to. Can't do much, but totally can lay around in PJ's and goof around. Low energy, yet fun, activity. Now now...what PJ's to wear?
It's the first time hanging out so it's a choice between standard jammies and a full on onezie though if you don't play that right, people may not answer the door. 'Sorry crazy chick! Not today Satan"!
I'm so wishing it was at least 3 p.m., but not so much luck. It's about 15 minutes to 2 pm with 2 more hours to go. There are worse things. Like drowning, or being lit on fire, so this could be worse. I just wish it would pass by faster. Like the Amtrak. HERE and gone again. Just that fast. OR maybe if I had a perfectly trained clone that could work for me that would be a feat of wonders for which has never before been seen!
I wonder what tomorrow will bring, after the fact. Will I or won't I get surgery? Will the feeding tube work? Will my fingers pull themselves off and run around because they protest to the constant art work?
Stay tuned...