Fear · Health · Medical · Multiple Sclerosis · Primary Progressive MS · Ramblings

Am I alive or do I just exist?!

Remember these from July 2019. My wonderful bladder stones thanks to my wonderful urostomy. So I was supposed to get this taken care of back in August 2019. Didn’t happen because that’s when I had to go to the hospital because I thought I broke in my hips and my back when I was trying to get in to rehab. Thanks to Independence Blue Cross not allowing me rehab I was unable to get out of my bed so we kept rescheduling. Now with the virus I was rescheduled twice, and today they called to tell me it had to be pushed back to May 26. But it’s really only a tentative date because it may change again. So basically I’m filling up with so much bacteria and that’s probably why I feel a little clammy and not well at times. I try to do everything right but nothing ever goes right. Possibly because I am left-handed. 😂😂 I’m joking… Or am I. 🤔

I am trying to find the humor in all of this because that’s the only way I survive. But man, it’s getting harder and harder to laugh. I know I know, I should be glad because I’m alive. Am I alive or do I just exist. You’ll be the judge. 🤷🏻‍♀️😕

Twins

There’s an alien in my bladder

I’m wondering how many more are in there now. 😳

Have courage and be kind.

Anger · Medical · Multiple Sclerosis · Primary Progressive MS · Ramblings · Sarcasm · Strength

Round and Round We Go

I’m probably the only bedridden person that can actually jump through hoops. Actually I’m probably not. I got an email, not a phone call, giving me the same information regarding non-emergent transport. Not sure he actually spoke with them regarding accepting Blue Cross as only one of the three actually accept this insurance. I completely understand why the other two don’t, as Blue Cross doesn’t pay! That in itself is disgusting to me. I was told once I found one that could help me that I should call to get pre-certification. Today I did that with the one company that actually takes independence blue cross. But alas, it is not I that calls for the precertification. I called the pre-cert phone number which took me to Accolade, not Blue Cross. Accolade informed me that I need to go through my doctor to show proof that I need an ambulance ride to and from my doctor to be allowed this service. You know being taken by stretcher to and from my doctors. Yeah, because everyone wants to go by stretcher to their doctors appointments. Are they fucking kidding me?! The Accolade rep did help me out by calling and taking care of all of this BS for me. The first person that actually helped and has done what they say they’re going to do. And she isn’t even a Blue Cross employee. As of now, I have an appointment on the 28th and will be picked up at 7:30 AM so I can finally see my doctor again. But, I’m not holding my breath.

I wish I could say that I am no longer stressed regarding this, but this is only the beginning. I need to get to my neurologists office as well as my urologists office. I had to put off surgery to remove all the bladder stones because of my inability to get out of my bed. Yes I will say that again, I had to keep putting off my surgery because I could not get out of my bed and was turned away from Independence Blue Cross for inpatient rehabilitation. I wonder, do I have to go jump through these hoops every fucking time I need to see my doctor(s)? Do I need to prove that I need to go by stretcher again and again? I truly am disgusted by Independence Blue Cross. ^^ Me, every time I have to talk to these people and every time I have to send an email when they cannot return an actual phone call. And I will say it again and again, how the fuck do these people sleep at night knowing that they are withholding care from another human being that needs specific care?! I will get my inpatient rehabilitation! I will get the care that I need! I will not allow this despicable company to be in charge of my health care over my own doctors!  People we need to stand up and say no more! We need to write to our representatives, call them out, acquire an attorney if needs be, we need to say… We are not going to take this any more! Do I seem angry, a little pissed off… You have no idea! 

Have courage to those who try to keep you down, and be kind!! 

Anger · Craziness · Health · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · Sarcasm · Strength · Stupid Stuff

Trapped Inside

This GIF popped up on Facebook and when I saw it I felt empty. I decided to post it because it really does sum up my life. I have been trapped inside my decaying body for approximately 6 years 2 months. It is actually a bit more but I removed doctors visits, visits to the store before my surgery in June 2014, and the occasional visits to my dads. In that time it equals to approximately 28-30 days that I’ve been out of my bed. I don’t know how it happened. What I mean by that is, I don’t know how it got so bad. October 10, 2013 I fell. I was transferring to go to the bathroom, and as I stood up my legs went limp like cooked noodles. They did no x-rays at the hospital that I can remember, they just really chalked it up to MS. The hospital and my doctors knew that I was unable to stand sit up, pretty much paralyzed from the waist down, etc. They did the Solu-Medrol bullshit which did nothing for me. Then they basically sent me home with no real after care.

This is where I don’t know how it all happened. The fall definitely started it, and then I go blank. The depression I remember was paralyzing just like my body. Then in a weird whirlwind of doctors appointments the next thing I knew I was scheduled for colostomy and urostomy surgeries for June 10, 2014. Was this medically necessary or was it done to make it easier for everyone around me? I don’t really know anymore.

Why wasn’t I offered acute rehab? Why wasn’t I offered in-home nursing care? I don’t know! 🤷🏻‍♀️ I do know that a friend, an RN, had to come to my house to catheterize me so I didn’t piss my bed every five minutes. Not sure why my doctors or the hospital didn’t do that for me. I also know, looking back, that I was completely fucking lost. I have never been someone to lie down and be stomped on, but I guess I could not find my strength back then. The surgery, for me, what horrific.  and the next couple of years were literally lived as if I were in a dream.I will fast forward to now, because I don’t have the energy to really talk about it much more. All I know is I am trapped in a body that is destroying itself from the inside out. Since I was denied rehab August 18, 2019 my body is deteriorating more and more. i’ve exhausted, in their mind, all appeals. DENIED!! 🤬  Because of this, my legs are becoming more contracted. Independence Blue Cross basically feels it’s not medically necessary for me, acute rehab! Because their doctors I guess are my doctors now and they know better. Are they fucking kidding me! I’m the fucking poster child for acute rehab! Here is a link of what is happening to me and what I sent to the insurance company thinking they would actually understand it and help me. Bahahaha They either cannot read or they just don’t care. I’m going with the latter. People are telling me I should contact news agencies, attorneys, etc., but the places I’ve contacted obviously don’t think that any of this is wrong. Either that or they’re just scared to death to take on Independence Blue Cross. I guess in the world we’re in right now it’s OK for companies like this to throw away the disabled, people with chronic illness, because we are the people no one really gives a shit about. And quite frankly, I’m tired!!! I have no help whatsoever! Mentally, physically… Nothing. 

I am 100% in prison for crimes that I have never committed. The prison that is my body and the four walls of my bedroom. There is only one or two people that completely understand what I’m going through that I know. And when other people say, they know what I’m going through, they completely understand, yet that person/persons are shown standing up in pictures and going places with family… no, you have no fucking clue what I’m going through. And you should be really fucking glad you don’t. If I were able to even stand up I would never be in this fucking bed. So please don’t talk of things of which you know nothing about. You may share my illness but you don’t share what’s happening to me.

What I hate the most about all of this is the person I’m slowly becoming. I really do believe I’m going to little mad, I can no longer see the light at the end of that tunnel, and I’m not sure why I even bother anymore. Yes it’s a new year blah blah blah… but for me there will be no changes. AND I am NOT being pessimistic, I’m being realistic!  I will add that you don’t need to worry people, I’m not gonna kill myself, off myself, end it, whatever. Do I think about doing that every fucking day… Yes I fucking do! But, I won’t and believe me it’s not for the reasons that you are probably thinking. And now, I think I’m done for the day and I think I’m going to medicate so that I don’t care what’s happening to me. And for those of you that act like I’m a stoner or something, fucking A right I am! Cannabis isn’t going to kill my kidneys or my liver like Norco and Xanax and all the other drugs they want to put me on. So yeah I love my weed. And to anyone that says that’s bad for you or it’s addicting or it’s a gateway drug, educate your stupid ass! Or better yet go pour yourself another drink or take one of your sleeping pills and then talk to me. OK I’m getting off base and I’m starting to get pissed so I’m going to end this for today.

So are you loving my new unapologetically me yet?

As always, have courage and be kind!

Anger · Fear · FUCK · Health · Hope · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · RANDOM

Surgery – not so much…Graphic

Surgery, June 10, 2014

****WARNING graphic photos below****

I did not come out of the dark until June 26. Sixteen days of what they call ICU Psychosis. Sixteen days lost to me. To everyone around me I was awake. For me, I was in a dream, not knowing where I was.

Backtrack… The surgery was to help me get some semblance of life back. To be able to go out more and to help those taking care of me. It did not go as planned. All seemed well when they finished and stapled my tummy back together. Sadly they soon knew there was a problem. I’m no doctor so this is in layman’s terms. The stoma was not producing and I was filling up with bacteria. After a week of excruciating pain and testing, of which I have no memory, they realized I needed emergency surgery as my white blood count shot up over night and they new right away I had a serious infection.

Once the un-stapled me they realized they had to stop the colostomy and re-route everything by ileostomy. Sadly the area was highly inflamed and the wound needed to be opened more. So, now, I have a large open stomach wound which will take some months to close.

***GRAPHIC PHOTO***

open wound

At this time I have to have a wound vac done twice a week. Sorry, but it’s fucking painful every time.

After wound vac is placed:

vac

Basically once it’s covered, it vacuums out any type of infection, and helps the wound the slowly close back up. Mostly I’m bummed because I might lose my cute belly button. Kind of sucks. ;-P

At this time it has closed up over 6cm in a short time. My surgeon says I’m the strongest person she has ever met. That even when it got really bad and they the I might go septic, my body fought hard and won.

Honestly, I don’t feel strong right now. The nausea is awful, it’s hard to sleep, and I’m in constant pain… but I will NOT give up now. I’m looking forward to the day they can hook me all back up.

My biggest issue is the anxiety from all of this. It’s a fight not to just break down in tears. But crying makes it hard to breathe and I have to be careful. Sneezing is a bitch as is coughing. But, again, this too shall pass.

I’m thankful to be home. Sadly the second day I got home my house flooded…

Go figure! 😛

Peace

Multiple Sclerosis · PAIN · Ramblings · RANDOM

OMG, he’s cuttin’ my neck open…

That was my reaction when my port was put in a few months back.

Let me backtrack a bit. In February I had a port put in my chest. With the monthly  2 hour Tysabri infusions it was the best option. Me ole veins are gone and sticking me each time was getting painful and harder to do. So cool, a port, a lil contraption with a tube under my skin in my chest going in to a vein. Easy peasy, right?

First problem when we get there is no ‘twilight’ sleep or meds, as, well, no veins for an I.V. Hence the need for the port. But it’s all good! The area will be numbed up and I’ll get a shot of Ativan [not that it would work on me]. I finally get wheeled in and the doctor comes in. He looks at the area for the port, then lifts the cover from my face. He says from his charts he assumed I’d be older but when he saw my skin and how ‘young’ it looked he had to see me. ummm hmmm smooth talker! lol Meanwhile Ativan not kickin’ in… they proceed to give me some injections in my chest to numb it up! OUCH! But then he injects my neck!! Um, WTF why are you injecting my neck. **shivers. Meanwhile Ativan not kickin’ in… He starts the incision into my chest, no real pain just pressure. Then I feel my neck getting cut. Okay, I speak up. “Why are you cutting my neck?” He asks me if I understood the procedure. I told him that I was told it was a a lil contraption with a tube under my skin in my chest going in to a vein. He explains it in a bit more detail. He tells me how the lil contraption [the port] goes under the skin in my chest, then a tube is brought up through my neck, around and down towards the heart into a vein. Okay then!! I guess it’s too late to turn back now! 😉 Meanwhile Ativan not kickin’ in…

All in all, it wasn’t too bad. I hung out in recovery for a bit and then we headed home. On the ride home… the Ativan finally kicked in!! Go figure. lol

on the way home
BAD reaction to the tape and bandages. owie
today

I figure, dudes dig chicks with scars right! 😛 I tensed my neck a bit so you can see the tube going up through my neck! Cool right. When I do this it freaks out my kids!! lol

Peace out all!

Hope · RANDOM

Please help Lucky!

Click to help Lucky

Lucky is an awesome doggie. I had the pleasure of meeting him personally when we went to the lake. If you are able, please help Erik and Caroline with the high cost of making him all better. Either way Lucky will get what he needs done, but I just want to help them with the costs.

Please click the link above if you can help!

——————————

Lucky’s Journey

I have personally met Lucky. He found his forever home with my nephew Erik Bol and his wife Caroline. They are true dog whisperers and now he is home with them and their 5 other furbabies.

Lucky’s diabetes is under control, but he now needs surgery to restore his sight. They have taken on all his costs up to now and will continue to do so. I wanted to start this page to help get them some donations for his eye surgery. I hope you can help this amazing couple! ~ Tracy – A Dog Named Patrick — Below is their story! ?

Background: Lucky was abandoned on the side of Consumnes River on Hywy 49 between El Dorado and Amador County in January of 2010. My brother William Fallscher discovered Lucky on the river’s edge, he was blind, emaciated, ravaged with open cuts and scrapes, and clinging to life. Lucky was rescued later that night by William and my husband Erik Bol. Erik and I (Caroline Bol) gave him refuge in our home so he could have the best chance at survival. Initially, Lucky laid in our garage on a dog bed for close to 3 weeks, unable to crawl more than three feet as not to soil where he rested. He finally was able to officially stand to do normal things, like go to the bathroom and eat food, it was so exciting. During those first weeks a veterinarian visited our home multiple times, her initial estimation was that he had been on the rivers edge for weeks and that it was especially troubling because he appeared to be diabetic and should have died due to lack of treatment, which is more than likely the reason he went blind. We sought to determine the status of Lucky’s health, the vet said she would see what she could do, because of her love for animals she was determined to help Lucky as best she could. Blood work was ran and it was conclusive that he was in fact a diabetic and needed to be treated ASAP. We began treating him immediately for his diabetes, helping him through his recovery.

Then

When we took Lucky into our home he weighed approximately 30 lbs., currently he is at his ideal weight of about 70 lbs. He has completely integrated into our household, plays with our other dogs, and sleeps on a dog bed right next to my side of the bed on the floor. His diabetes is now completely controlled by my husband and I, but he is still blind. Our mission is to give Lucky a second chance at life, ultimately enabling him to see once again. He is the sweetest dog and my husband and I would not have changed anything, we are so happy to have Lucky in our lives. Every time I see Lucky warm and safe in our home, protected from the elements and any wildlife predators that he certainly had to fight to protect his life, I am overcome with joy. He is the ultimate fighter. Unfortunately though, he will remain blind until we can find him some help getting his eyes fixed. Currently he does not see anything and runs into everything. It would be the greatest thing if he could see again.

Vet information: Bronwyn Szignaroitz, DVM- she is a mobile vet, Phone # 916-673-8890

Now
xx, Tracy…
Hope · Ramblings · RANDOM

The donations blog…

Some clarification here. I am in agreement that it is a quirky and kind of pathetic blog and request. Here is my reasoning for it. Read or not, it’s up to you.

My hubby would let me put us in to debt to get this done, as he knows the struggles I go through daily regarding my MS and my feelings of low self-esteem regarding my body. My c-section with my twins lost me some lower tummy muscles and is something I would not trade for the world. lol I am 6′ tall when walking, but now I am 4′ feet or so as I need a wheel-chariot. At one time I was 6′ and weighed 153. I looked good. 😛 Now thanks to my MS and my medications and weight gain due to these issues, me self esteem is low. I can not bring myself to look in the mirror anymore as I do not like what I see. This is my issue and no one elses.

I’ve had people say to just deal with it, I look fine, etc. But to me, I do not. The MS took so much from me, and I want something of the old me back. My body will never be the way it was, I’m not stoopid! lol But, it can be what I feel good about. I will continue to eat right, do what small exercises I can and move forward. My neuro stated the only way to get rid of my ‘issues’ most likely would be surgery in the future. He meant it in a good way. 🙂 It’s hard for me to sit up most times, so tummy exercise are few and far between.

So, there it is. My dream, is maybe just maybe, someone will see this and offer their services. But, I will not hold my breath!! [quacks need not apply]

BREATH!!

The ideal doctor would be Dr. 90210, Robert Rey. Wow, he does some awesome work.

So, there it is. Why the blog, why the donation button. I just can not see me spending that kind of money on me. Thanks to amazing people I’m getting the bathroom of my dreams, and more needs to be done for handicap access to my home. So that’s where we need to focus our funds, there and our 3 teenagers! lol

My motto when things seem far fetched and off base…’It could happen!’

Blessings and Hope!