Say goodbye to my beautiful custom liner :(

Custom liner

Today was my second round with Prosthetic company… Two more check sockets were made, to try two different systems using the custom liner they had made for me… Summary of the visit. FAIL… Plan A, Plan B and Plan C are all a bust… Now we’re reverting back to system I was already in, which was working when first made and I just started bottoming out really bad and they couldn’t seem to pad it or add socks to help it fit right. So now they’re molding the socket I already have and going to create a smaller version of it and try that. Weird route to take. I think they should be re molding me wearing the liner that only this system can use, which is how the leg was first made last year… But then what do I know, I’m not the Prosthetic guy. lol.

His opinion is I should be having more revision surgery. My Ortho doesn’t agree, nor do I… I think it’s possible to get me in a prosthetic that will not add more pain than I already have. I understand pain free one isn’t an option, but it should not give me even more pain, or create pain in places I don’t normally have either. Today it was squeezing on the base of my stump so bad, and pressing on nerves or something that connect to a foot I don’t have. All my toes were moving, as was my foot and it was hurting. I do not suffer from phantom pain at all normally. That has been one blessing in all this, so adding phantom pain to the mix is not something I would welcome. Geez… I now have a very pissed off stump AGAIN. It’s very red and was already bruised before we even left the Prosthetics office. Not a fun day and not a successful one. Matt made a good point that they don’t realize that not only is it ridiculously painful doing these fittings, having to keep forcing your stump into something that is to small, too tight, and applies pressure to the areas they specifically were told by your Doctor not to ever do… anyway, but they don’t realize the emotional part of these visits either.

I’ve been told my whole life I have such an incredible tolerance to pain, but I’m sure this guy thinks I’m a big wimp, haha. I didn’t cry or anything while there. I save that for the hour drive home. haha. Oh well, you know me I have to find a silver lining in everything, so I guess this one would be, sometimes you have to rule out what doesn’t work in order to rule in what does. And sometimes what you had to begin was the right route and just needs to be improved upon, adjusted or re created to properly fit….

I never went in to get a new system. He was just so excited to get me in one, and so excited about the custom liner, which excited me about it. I loved all this new technology and options I’d have… Sadly they just aren’t the right ones for me. And that is ok… Just hoping to have success with his new way of molding my old socket and shrinking it a little. I don’t agree with this route, but will leave it to the professional… should it not work out, Matt and I discussed it together and feel I may need to go somewhere else … or perhaps explain again the importance of molding it from start to finish the way you would any new system and socket… I get why he’s going the route he is, because he feels it once worked and modifications that he may not know of could have been made by the previous tech who made it, and he wouldn’t know what those were… I think it’s more a short cut, but that’s just me. I’m not a real short cut kinda person. As long as it works, I’ll be a happy camper. If it doesn’t we will keep at it, till something does. I’m going to get creative myself this week and have a few ideas to make the leg I have fit a little more comfortably in the meantime…

Yes, this was me venting… all better now. Even I get frustrated and emotional. I just want to be able to be in a prosthetic and be able to get out of bed, put it on and walk in it all day. I want to workout. I want to hike. I want to rock climb. I want to surf. I want to wear my leg all day and night until bed time. I want a lot of things, like anyone would in my situation. I won’t give up until it happens. And it will happen. My Mom reminds me that I’ve never done anything in my life the easy way, so why on earth would I expect this to be different… ahhh it would just be nice once maybe to experience that tho. haha. Loving the people I love comes easy, and it’s about the only thing that does, haha. And it’s probably the best thing in the world to be able to do, so I’ll quit my bitching now. But I will never quit striving for all that I know is possible. I refuse to believe I’m not a prosthetic candidate or that I need hack off more of leg to be in one. We got rid of the necrosis and there is no reason to remove more of my leg. When it was my life on the line, it was the right thing to do. Pain itself isn’t reason enough and doesn’t guarantee a damn thing in the end. So no. lol. Nuff said.

There is reason behind everything we experience…

I shared my CDiff story a little over 3 years ago online, on cdiff forums, on any forum I could possibly reach out to let others know they were not alone… It was the end of Feb and 2 days after sharing my story, I relapsed with this nasty bacterial infection… With the help of Dr. Stollman and his guidance, we repeated the FMT procedure (at home- without the surgical portion that we’d done in his clinic in February)… One this very day 3 years ago, with the miracle of my husbands poop we kicked Cdiffs ass!!! My story may be something that is TMI for some people. If you are someone who can’t handle the “ick factor” in it, I apologize, and you need not read on of course. But it’s worth reading, esp if you don’t know what CDiff is. Esp if you will ever spend time in a hospital, a nursing home… esp if you have other physical issues that lower your immune system.

In sharing my story, which I have continued to do over these past 3 years, 512 people that I know of have had the FMT procedure in their local hospital, at clinics near and far from their home cities, and in their own homes, and are ALIVE today because of it. I know the exact number only because it’s been 512 people who emailed me, called me, texted me and let me know first hand where they’d found my story and reached out… I have no idea how many others have read it and not reached out. But 512 people alive and kicking is incredible. And had I not got CDiff I would never have been able to tell this crazy story and reach those 512 people, because I didn’t know a damn thing about Cdiff until I lived it and almost left this world because of it.

When I was diagnosed, I was relieved to finally know what I had and knew I could not get treatment and get healthy again. I didn’t even know it was a possibility that the medications wouldn’t help. I was so focused on the relief in knowing what I had, and getting the meds and hearing the Doctor say in 2-3 days I’d start feeling myself again. OMG thank God… For those of you that know my story, that didn’t end up being the case at all for me… For those who don’t know it, please read the full story and share it. All of my family and friends have told me how much more careful they are now when in medical settings, when having surgery, etc… the name CDiff became something they all were now aware of. And awareness is one of the hugest things needed to help not get this nasty bitch. Sorry but it sure as heck is. Millions of people get CDiff each year- MILLIONS. A HUGE percentage of people take their round of medication and cdiff is no longer ever a concern in their lives. Others relapse within days to weeks after the medication course is completed. Others get no relief. Everyones body reacts differently and CDiff effects far more than you GI system. The millions of people who took a 2 week round of medication and ridded this nasty infection don’t share their story, because it was for them like any other infection, esp when diagnosed early on. The stories shared are those who started by reaching out, by feeling alone and in search for help and support, by those who want to help support others and let them know they aren’t alone in this.

The next time you look down at your antibacterial soap, hand wash, little bottle in your purse that you never go without, look at it good and not where it says KILLS 99% perfect on germs bacterias etc… Guess what the 1% is that it does not kill? CDIFF!!!! Good ole fashioned soap and water after someone uses the bathroom is a MUST DO… Bleach in hospitals is a MUST and I’m happy to report that in the last couple years sooooo many hospitals are now using bleach. So many new measures are being taken to reduce the risk in clinics and hospitals all over the world. The studies showed in the last year that have been published that the hospitals that took part in them had a 80% decrease of CDiff. 80%… That is incredible. Also at the time that we flew to Oakland, CA to get my Fecal Microbial Transplant done there were less than 5 places that openly admitted to doing FMTs in the US… Now hundreds of hospitals and clinics are doing so…

My heart goes out to so many who have lost loved ones to CDiff and it’s complications. My heart goes out to those still fighting it, still trying to find the right treatment for their individual body… My body still 3 years down the road hasn’t fully recovered… The damage done to some of my organs is still an issue, but I’ve also seen small improvements as well as large ones. And I truly have faith that one day each and every cell in me will be new and strong and replace all those that were damaged by this beast. As you know I contracted CDiff while in the hospital on antibiotics that were necessary since I was undergoing surgery for having my forefoot amputated and ankle fused… The antibiotics do not give you CDiff, something I often hear people say. The CDiff is not in them, lol. It’s that while you are on antibiotics to help rid bad bacteria, or to avoid infection which was crucial in my amputation surgery, you are then exposed to CDiff and have no immunity towards it, cause your health flora, healthy gut bacteria goes bye bye along with the bad stuff while on the meds… Most people live in a constant fear if they’ve ever relapsed with CDiff of taking antibiotics. I am happy to report that a year after loosing my foot, I had my leg amputated and was on antibiotics again, and in the hospital, and I DID NOT relapse with CDiff… Less than a year after I was again on antibiotics when the tumors were removed my stump, and AGAIN I did not relapse with CDiff… I truly believe that this is because unlike antibiotics which rid bacteria, the FMT helps populate the gut with so much healthy bacteria that it did far more than rid the bad bacteria, it rid the spores… And thankfully I have the peace of mind that if ever we needed to reinforce my troops again, well Matt has an unlimited supply of my cure. lol. Sorry I couldn’t resist. :)…

In the near future as the FDA of course has to find a way to make money off things before they’d ever put their stamp on it, lol, there will be a day where every state has clinics, hospitals and treatment centers where properly tested donors will help provide cures to others… Will they ever truly let it be what it should be? That I doubt cause they can’t make enough money off it. But I do believe the “POOP pills” will be something that in the coming years comes avail to others in need of the treatment. As gross as it may sound to you, I promise you one thing, if ever you experienced CDiff first hand, nothing would sound to gross if it meant you could survive… Just my own personal opinion. I simply support whatever works and helps a person live… 🙂

everything happens

You want it – FIGHT for it!!!

ABC

This is a great message for everyone… We all have things in our life, whether physical, emotional, mental, spiritual, or a list that I could write for days on that we may struggle with at times. Look around you, see how many friends or family members you know first hand that are fighting to breathe, to live, to be… I don’t have enough fingers and toes to count the dearest of people in my life that are battling, Cancers, MS, Diabetes, HIV, Hepatitis, ALS, Psychological Disorders, Abuse- from alcohol and drugs to physical and mental abuse…. again the list goes on and on… But the one thing all these incredible people have in common, is the WANT to be here, to be in this life, to be more than alive, but to truly LIVE… So they FIGHT…

Often we don’t even know just how much fight we have in us until we’re faced with the hards… Some battles we win, some kick our ass… The one thing I do know is that everything serves a purpose. You may ask yourself what on Earth would my having ____________ (fill in the blank of whatever your difficulty, challenging or battle may be… ) do to serve a purpose? Well take a look around you at the people who love you, the people you inspire, the people who gain their own courage and strength to get through their day, to fight for more in their life, from themselves and from life itself, because of YOU. The purpose behind what you go through may not always be seen or understood by you directly, but I truly believe it’s always there…

This post goes out to you all, and you know who you are, that fight the fight every day to more than survive, but to thrive in this life, whether silent or out loud!!! I cannot even believe how many truly incredible human beings I know and blessed to call “Ohana” in every way that truly matters. Love you all!!!

Prosthetic process continues… We will GET the right fit!!!

Mold for socket

Yipee!!! My custom liner arrived and were casting for my check socket today!!! This is going to be the fit we’ve been waiting for!!!

Cocktail

Soooooo… He had us go next door after casting my leg cause they needed to make the check socket and lets just say I should have had A LOT more of these yummy margaritas. This being the first cocktail I’ve even had since New Years and had I known what I was in store for I would have had a dozen more instead of just one! Ok so it didn’t go great but at least now I think he’s getting the difficulty of fitting me with the obstacles of not just the shape and size that were all he seemed to think we were faced with but also the insane pain and nerve issues, the adhesions and neuromas etc… After hours of torture squeezing into something that took my pain level from a 6 when we began quite quickly to a raging, screaming, nerve firing like crazy 10 he seemed to get why my Surgeon and all Doctors who’ve dealt with my stump said no stump wearing PERIoD!!! And to make sure the prosthetic holds me in at the patella and consular area only and never ever the stump! Matt was there and watching the tears in his eyes and hearing him say how much he remembered now how difficult and painful it is to watch me for through fittings almost made me cry. But I gutted it out and did my best to communicate what I was feeling and what wasn’t working. Matt explained to him and reiterated things and finally it sunk in and he said I was not a candidate at all for all surface weight bearing and that he didn’t realize how severe the damage and issues were… Soooooo it’s ok and part of the process and we just have to step back and reboot. Lol! We did another new cast and this time the check socket will be designed to hold me in where the doc explained, where I explained, where Matt explained… Ahhh! And then we will go from there… I have faith that WE will get it done right and it will all work out in the end. Why on earth would I have thought it would be smooth and easy? I’m always a pain in the ass so some things never change lmao! We just have to let it calm down and get the swelling down and move on to plan B:) The positive in this is that sometimes you gotta the wrong road to get back on the right road… And one way or another you’ll get to the right road, just can’t let the potholes, speedbumps and crazy whiplashes stop you! Lol! Oh the other positive is this was the best margarita ever and the chips and fresh salsa, guacamole and tamatio were friggen yummy and were so going back to this place. Haha!