Thursday Feelings – I am a Warrior

January 30, 2020January 30, 2020 Tracy2 Comments

I’m kind of excited I found a non-emergency transport so that I can get to my doctors. If I can work it out perfectly I can make my appointments for the same day. It’s nice that all my doctors are in the same building. It’s going to be so much easier going by stretcher then having to try to sit for any period of time in my wheelchair. I can’t even get my wheelchair so I think this is going to be good. I think I’ll buy a crown for that day and as they’re pushing me through, I’ll put my hand up and do the wave. 😂

I’m going to talk to my doctor about contracture surgery as well as rehab. Maybe that’s the route to go. I’ve been trying to find the perfect in-home PT group from the names the Blue Cross rep gave me, but that’s not helping. All they tell me is, “Our rehab people are good.” I’m sure they are. I’m asking if they deal with muscle contractures. Frankly I don’t think any of them know what that is. 🤔 I just want to know how in-home therapy is going to be able to help me with the pain. They don’t. I need to be in a facility if I want any pain help. So I guess I’m just going to grit my teeth. 😁 I can tell that this is going to be a lot of fun…

Now I need to get my appointments, get the certification from the insurance company, and get a time slot for the transport. Oh how I love jumping through all these hoops just to go to my doctor. Oh well, we do what we Gotta do. 😏
Time to straighten my crown and get shit done. 🖤Have courage and be kind

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

Trapped Inside

January 13, 2020 Tracy2 Comments

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 · HELL · Hope · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · RANDOM · Strength

Too Disabled…

June 19, 2018June 20, 2018 Tracy12 Comments

Well those are not the words that were used, but that’s exactly what was meant. I’m too disabled for the DMD’s. That unfortunately in my current situation I am more susceptible to the side effects. Because of my bedridden status my body is at higher-risk of infection. With my constant bladder infections it could easily lead to sepsis. Because of the cancer that runs in my family I’m more apt to the cancer side effect of Ocrevus. And, in a nutshell, it’s not really meant for the primary progressive form of multiple sclerosis. I hate being right. I knew that the big hype that this was the first medication for the progressive forms would not mean primary progressive. If I want to be on the medication they will classify me as secondary progressive… and that’s not happening. I’m numb right now and I’m trying to come to terms with this. I’m angry too. There are people out there going med free thinking that they’re beating the monster that is MS. In the background MS is still progressing and doing its MS thing. I’m scared for them because when the relapse hits, and it will hit, it will be too late for them. They are blessed to be able to be on one of the many medications out there now, and they’re not doing it. I understand it’s a personal choice, I get that. But MS is not stopping because they’re eating right and exercising. That’s not going to slow or stop the progression. That’s not opinion, that is fact! I’m angry because I want to be on one of the medications and I am not able to take one. And for me the side effects aren’t nearly as awful as the MS. I’ve had to be med free, I’ve done the good healthy eating, I do the exercise as much as I can, and I still progressed to being bedridden. I’ll trade anyone of you people to be on those medications. Do you want to trade your MS for mine? Yeah I didn’t think so.

Before anyone says get a second opinion, this is the second neurologist opinion. He did say to keep doing what I’m doing regarding exercise and eating properly. But he also explained that I shouldn’t get my hopes up because I probably will not get back the use of my legs to transfer etc.. The good thing is with exercising I’m getting what’s called muscle memory. That’s pretty awesome because it’s much better than atrophy. But it really is kind of a second gut punch to me. I know in my intelligent brain that I can’t really get back everything I’ve lost, but in my hopeful mind I wanted to believe I could. So I will keep exercising the best I can and continue on. I have to, there is no other option. I will not fall back into my negative mind. I will keep my new positive outlook going and fight through this as I have fought through everything for the last two decades.

The main thing I have to do now is to let go of the what ifs. What if I had gotten into a physical therapy straightaway when I fell November 2013? What if my doctors had been more proactive with me? I can’t go back and change any of it and I need to let it go. I need to move on from here and continue doing what I’m doing.

On in a bit of a positive note I did finally get my x-rays done. That fiasco is for another blog. LOL I’m hopeful this will give them some more information in combating my pain. Right now that’s my focus. If we can figure out what’s causing my pain and get it under control I may be able to be in my wheelchair more. So that will be my next journey, the journey for pain relief.

If you’re able, go out and seize the day, because you never know what tomorrow will bring.

Have courage and be kind…

Craziness · Family · Fear · FUCK · Happiness · Health · Hope · Love · Medical · Multiple Sclerosis · Primary Progressive MS · Ramblings · RANDOM · Sarcasm · Silly · Strength

Must re-charge…

April 18, 2018April 18, 2018 Tracy2 Comments

Yesterday I went to see my neurologist. I finally got to use my new wheelchair.

When the doctor came in the room he looked at me and said, “You look so good!! No one would know you have primary progressive MS.“ I’m never really sure what to say when I hear something like that, so I just smile. We discussed the infusion, the newest DMD (disease modifying drugs), Ocrevus. He said he would get an appointment for me and the drug rep as soon as possible. He is very worried about the ‘serious‘ side effects. We all know that the medications for MS do come with very serious side effects. The problem for me, is my urostomy. I am prone to kidney and bladder infections as well as kidney and bladder stones. Because my immune system is overactive, it’s fights off some of the infection. If I am put on a medication that suppresses my immune system, I could very easily become septic. So I’m kind of screwed. At least he is giving me the option and I will be talking to the drug rep about it. Hell, I haven’t had a cold or a flu for so many years thanks to my overactive immune system. The only time I have gotten sick was when I was on a couple of the DMD‘S many years ago.

Then I did my normal, “I need prescriptions“. The main medication I need is the daily antibiotic I have to take, twice a day, for my issues. Rapture! LOL and we definitely cannot forget my antidepressants. Without those no one wants to be around me. 😈

After that we went to Walgreens to pick up my new prescriptions and then we went and got some dinner. I was only up for about three hours, but it totally kicked my ass. Today I am running on empty.

Sadly that is what MS does to us… At least the majority of us. It’s very rare that we can go and do things, and then be able to go and do things the next day. It’s very depressing, especially when you were someone who was always on the go. This disease changes is and takes away everything we once were. That is why we must be stronger than our MS. We must fight it every day, which sucks hairy balls, but that’s what we have to do. And we do it because we are warriors!

Have courage and be kind

** I will be back with my positivity journey very soon. So much love to all! ♥️

Craziness · Fear · Health · Hope · Love · Medical · PAIN · Primary Progressive MS · Quotes · Ramblings · RANDOM

The Strength Inside – part IV

April 14, 2018 Tracy4 Comments

I had entered the hospital on February 16 and by now, with my best recollection, it is February 22. I had agreed to go to the rehabilitation Center at Palmdale regional. Or at least that’s what I thought. Again, I was heavily medicated with morphine and being in the hospital I wasn’t sleeping the best. I was just about to fall asleep when two very, umm, loud women came in my room.

Hurting my ears

The one woman mentioned that she was from a rehabilitation center in San Bernardino which was an hour plus away from my home. She and the other woman, the hospital case manager, both explained how ‘their’ rehab center had been in business for 22 years (maybe 24) and they were the best. Now in my morphine haze, I thought they were actually talking about Dr. Nasser’s rehab center. If I had been in my right mind I would’ve realized that his (Dr. Nasser’s) center was not an hour plus away from my home. But these women were so forceful in their ‘sales pitch’, that I just sat there nodding my head saying yes. Somehow they had heard about my interest in going to a rehab center, and ended up in my room pushing their place on me. I was a little taken aback because the case manager from the hospital was with this person. In my mind, this was a conflict of interest. [ya think] I felt as if these women were tag teaming me. 😂 I don’t remember much more except, I think, I agreed to go to their place. When they left I was very anxious and in tears.

As I was falling asleep, a man entered the room. Instantly I felt calm. He was good looking, he was dressed nicely, had very nicely trimmed and well-kept beard going on, and he was Zen like. He told me his name was Scott and that he was from the rehab center at Palmdale. So now my mind was going in all different directions. I explained about the two women that had shown up in my room and how they told me theirs was the best rehab center around. He smiled and told me that they are a well-established rehabilitation center. He explained that the rehab center at Palmdale was fairly new, only a tad over one-year-old. I knew immediately I was going to go with Palmdale. Not just because it was only five minutes from my home, but because this guy made me feel calm. His voice was even, he had a pleasant laugh, and he was not throwing me a sales pitch. I know I was high on the morphine, but he also made me feel high just talking to him. I told him my mind was made up and that I wanted to go to ‘his’ place. We talked a few more minutes and then he left. I was so calm by then I just remember falling asleep for a good four hours.

When I woke up, that evil little voice inside my head was making me very nervous. Telling me I wasn’t strong enough, that the pain would be too much, that I can’t forget I have primary progressive MS. As usual, I started to weep. And yes, ugly cry. And yes, snot running down my face. But then, as if a fire was lit inside of me, I dried my eyes wiped my nose and said to myself, “I CAN do this! I know it will be hard, but I know I have the strength and the courage to do it. My life and my families lives depend on this. I’ve got this!”

The next step…Life!

Love and Light

Health · HELL · Multiple Sclerosis · PAIN

Hell Hospital pt.4a the Colonoscopy [2nd and last time]

February 13, 2010February 15, 2010 Tracy16 Comments

January 29 – February 4 – Antelope Valley Hospital, Lancaster California. Second Floor East.

*********************

This is the day I have dreaded. This is the blog where I will be ‘naked’. We will call the nurse tech in question ‘S’, so as not to use names. This blog, again, may have some TMI moments, so do not read if you cannot handle it.

And remember, “My tears are not a sign of weakness!”

*********************

She was wheeled back to her room in her bed and slid back into the bed 4 slot. Her minded raced as she knew she was going to have to go through the another Colonoscopy tomorrow morning at 8 am. She also knew this meant drinking more of the cleansing drink. Bed 4 was the first bed on the right as you walked into the room. No one was in the bed 2 slot, so she asked to be moved to there as it was by the window and had a bit more privacy. The commode could be put against the wall, not next to a person’s bed, and she would be far from the door there. The nurse checked and said they would move her. She asked for them to roll her bed to the spot. One of the nurses asked why she could not just walk to the bed there already!! OK, Really! What part of, ‘I have MS and am unable to walk’ haven’t you understood since I have been here 5.5 days already!! Needless to say, the rolled her bed from bed 4 to bed 2.

The nurses got her all set up and moved her things over to bed 2. Commode against the wall, far away from all. In the bed next to her was a pregnant woman, approx 34 weeks. This confused Tracy completely as the hospital had spent lots of money in the previous years for a fully equipped Maternity ward. Not enough room at the Inn, so they shove this poor girl in a ward with sick people. [Tracy still scratches her head over this today]

On her mind now was getting mentally ready for the ‘drink’. She told the nurses in no uncertain terms she would NOT drink the go lightly!! She wanted the sour tasting drink from the 1st night she had to cleanse. It was not much better, but it was less to drink and she could stomach it.

There was one amazing moment, when her husband brought her newly 16-year-old son to visit her. She was in the hospital on his birthday [Jan. 31] and they would not let him in as he had no ID saying he was 16. He’s only 6′ tall and looks every minute of 16. Somehow daddy got him on this night. Even sitting on the commode, covered up, her baby hugged his mommy and told her he loved her. This was the one light in her stay. They only stayed for about 10 minutes as it was getting late, but that 10 minutes was worth a lifetime!

She had drunk the drink a bit before her hubby and son had come. Her cleansing [she thought] was pretty much done. Strangely, she was still not running clear. For a moment she smiled and laughed to herself that when the next time someone told her she was ‘full of shit’, she could say ‘yup I was’!! 😛

Her neighbor across the way awoke and started vomiting, badly. She grabbed the call button and told them that the woman needed help now. After a few minutes, she hit the button again, this time not really needing it as she is sure the whole floor heard her. GET IN HERE NOW, SHE IS SICK AND SEEMS TO BE HAVING A HARD TIME BREATHING!!!!! They finally came and helped her. Tracy was pissed off and disgusted by the treatment she was receiving and the treatment of others. She heard a man’s cries almost everyday for help. Was she in a horror movie, where were the cameras?!

At this point she was exhausted and figured she could finally get off the commode and go to sleep until the next day. She cleaned herself, got into the bed, and fell asleep.

She awoke in complete terror and humiliation. She thinks it was around 1-1:30 am or so. She knew she could not clean herself this time. Tears streamed down her face. She knew she had to hit the call button, but how could she? She was horrified and shaking. How could this be happening to her? She slowly reached for the button and pushed. A voice asked her what she needed and she said she needed some help. She could feel the burning and finally S came in to the room, to her bed. She quietly told S that she thought there was a problem. As S removed the sheets and protector covers she knew there was by the sound from S. S would have to go and get some things to clean her. She heard S making a gagging noise and a eeech sound as she walked from the bed.

She tried to hold back the tears from flowing, but after that she was fighting a losing battle. She kept apologizing as she felt so de-humanized and humiliated by this person. S came back with a bucket of warm water and cleaning cloths. She haphazardly wiped Tracy down quickly to get her off the bed and back on the commode so she [S] could clean the bed. As she got on the commode she took off her gown and fumbled with the snaps on a clean gown so she could put the new one on. S was more concerned with getting the bed cleaned than getting Tracy cleaned.

Again, she apologized to S. The comment back stung in her ears, ‘Well there is still a lot more to clean!’ Tracy took some of the wipes she had and tried to wipe herself in the spot she knew S had missed and was not planning on re-doing. By now she knew she would not get back into that bed. The fear was too much for her to handle. Once S got the bed made she asked her to help set up her MAC on the bed so she could play games as she did not want to fall asleep again. S leaned over Tracy and they grabbed the MAC and set it all up. Tracy was not to see S again!

The next thing she remembers is waking up on the commode [3:45am approx], legs numb, pain in her back, and her game over. Her bottom was burning from the negligent cleaning S had done and she reached gently for the call button. S did not answer the call, but the RN did. She took one look at Tracy and went and got a new bucket of warm water, cloths and ointment. She gently helped her to her feet, leaning over the bed and thoroughly cleaned her. Her legs, her lower back, her bottom. Then she applied and ointment to the burning area. Tears fell from Tracy’s eyes, she felt dirty, De-humanized, humiliated. The RN’s were not supposed to do this, but S never returned. [probably better for S not to return!]

After she got her all cleaned up, the RN got her back in to the bed, and gave her something for her pain. She tried to fight sleep, but she could not.

She woke up to a new batch of nurses, shift change. The NT she liked, K was there. Again, still not running clear, so time for a fleet enema. K was caring and compassionate and helped her through it, and cleaned her when needed. They had postponed the procedure from 8am for about 30 mins or so. After the fleet and a warm water enema, she ran CLEAR!!

This time a gurney came for her. They asked her to scoot over to it… Really!! I’ve been here 6 days now and you still do not get I need help doing this. OMFG!! Finally, with help, they got her on the gurney and headed to the GI part of the hospital. The two amazing nurses she had the day before were not on her procedure. She was very sad by this. When they came in they change the chart so they would be in on her procedure. This made it things so much better.

The next thing she remembers is waking up and the GI nurse telling her it worked and all was good. She was so relieved! They came and took her back to her room. By now she was hurting and a bit thirsty and hungry. Almost directly after she got all settled in, her hubby got there the Nurse came in and said she was being released. Nothing for pain, no food…

**to be continued**

Blessings and Hope!