Being Defeated is NOT an Option!

April 27, 2018April 27, 2018 Tracy4 Comments

Yesterday was not one of my better days. I had in-home physical therapy in the morning and then my appointment with Dr. Nasser in the afternoon. I was feeling okay in the morning and after physical therapy. All of a sudden it felt like a Mack truck had run over me. I just started feeling queasy and was having a hard time sitting up. At around 1 PM we started getting me ready for my appointment. I am unable to dress myself so I need to be rolled and moved a lot. The pain was unimaginable. By the time I was dressed, leg braces on, and Hoyer lifted in to my power chair, I was done! I could’ve canceled my appointment, but I knew I needed to go. He deals with my pain management, so I needed to go badly. The drive was excruciating. When we got there it was 83°, and heat is not my friend. The combination of everything started to bring about a little bit of depression. I was angry. I’ve been trying so hard to get better and to feel better… then this hits me. I felt like I was being punished for getting dressed. LOL I know that sounds crazy, but that’s how I was feeling.

Bottom line, I was feeling defeated, I’m not gonna lie!

By the time I got into his office I felt like I was going to be sick. Then I realized that my Hydro flask had leaked water all inside of my purse. It looked like I peed myself. Which, I’ve done before, but this time it wasn’t me. LOL Roger took my purse outside and dumped all the water out. He left to go upstairs this doctors appointment and I went into the room for my doctors appointment. The room was so small and it was so hot in there I thought I was going to pass out. Thankfully Roger’s appointment finished before my doctor came in the room, so he came in with me. Sometimes I just need my hubby. Sometimes! 😉

My doctor finally came in the room, we exchanged pleasantries, and then took care of business. I got my medications refilled and hopefully four more physical therapy appointments. I explained I was a little perturbed that someone had dropped the ball because it took three weeks before I even got physical therapy started after I left the rehab. But, I have to let that kind of shit go because all it does is upset me. Those of us that deal with chronic illness and doctors know that many times we are not the priority. While my time in rehab was awesome, follow has not been the best. Luckily, I am a little bit of… okay a-lot-a-bit of a bitch, and when I set my mind something… nothing will stop me!

We wanted to go grocery shopping after our doctors appointments, but that wasn’t happening! By the time we got home my pain was so intense I just wanted to get into my bed and hide under the covers. And that is what I did! There were a lot of tears and, again a lot of feelings of defeat. I started second-guessing myself. All I could think was, if doing the little stuff that I did was going to knock me the fuck out like it did, then what’s the point? Is it ever going to be easier? Do I want to keep putting myself through the horrific pain every time I move? The answers are: I’m primary progressive and yes the little things probably will kick my ass, it’s probably not going to get easier, and I do have to put myself through the pain if I want to get better.

I may be down right now, but I will never be out.

Have Courage and Be Kind

** again, I’m sorry for bad grammar, typos, run on sentences. I’m a business major not an English major. LOL PEACE!

Craziness · Hope · Love · Multiple Sclerosis · Primary Progressive MS · Ramblings · RANDOM · Strength · Stupid Stuff

Sofa King Tired!

April 23, 2018April 23, 2018 Tracy2 Comments

Randomness:

I went to the doctor last Thursday. After the doctor we went to Walgreens to pick up my prescriptions and then we went to get something to eat. I’m still exhausted from that day. I’ve had two in home physical therapy appointments and the pain is intense. Nevertheless, I got through them both. On the days where I feel like I just can’t go on, I just want to stop everything. I ask myself why I’m doing this as I know it’s going to hurt. I start to second-guess myself. I truly am my own worst enemy!

So, instead of quitting, I push on. I remember why I’m doing this, and that makes me focus.

Just had a surprise shower after PT day 2. [not my normal shower day] I am back in my bed resting and re-charging for tomorrow!! Peace out … for now!

Have Courage and Be Kind

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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! ♥️

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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

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The Strength Inside – part I

April 10, 2018April 11, 2018 Tracy5 Comments

I truly believed that my life was only my MS. I was no longer Tracy, my new name was MS. For years I was told that with my type, Primary Progressive, that there was nothing I could do. I would slowly progress and there was nothing that would stop it. For some reason I actually believed the people that told me that, hell they were doctors. Basically, I gave up. On January 30th, someone I loved very much, passed away. I don’t remember much after that until February 16th when I came to a crossroads. During those 2 weeks I lost the use of my left arm, and most of my right. I had told my family that when my arms went, I’m going too. So on that night, with the only hand that was working, I opened a bottle of my pills, and was ready to go be with my beautiful friend, Carolyn Baker. Then something amazing happened. You see normally my dogs sleep with me. That evening none were in my room. At the moment the bottle touched my lips my beautiful girl, Soloh, jumped on the bed came to me and snuggled. I could hear Carolyn’s voice telling me to STOP, that I’m strong, and to get the HELL up and get some damn help!! I knew it was Carolyn that sent Soloh to me at that moment. She loved my lil’ PitMix. I looked up, and smiled through tears, and put the top back on the bottle and set them down, and said ‘ok, girl…I hear you’! I called to my husband to take me to the hospital. He said we could wait until the next day. (Note: My MS has tried to break my family. There is much anger because of it.) At the time, my urine was very very dark almost black. I knew I had an infection for at least 3 weeks by then. So that’s why my husband thought I wanted to go to the hospital. I didn’t fill him in on the real reason…yet. I told him, “okay” and I found an ambulance that took our insurance, and called. About 5 minutes later there was a knock on the door and my husband came in and asked me if I called an ambulance. I laughed and said, “yes”. He smiled and let them in…

survive

In this moment, my life has been changed forever…

My arms are getting tired, part 2 will be up tomorrow. Please stayed tuned. And, miracles really do happen.

Have Courage, and Be Kind

Health · Hope · Ramblings

The Padded Room featuring Carol Urban!

May 13, 2010May 13, 2010 Tracy3 Comments

This week’s guest is Carol Urban. She will be sharing her story of courage and strength in the face of adversity.

Carol was diagnosed with Stage III colon Cancer September 2007.
We hope you join us for this amazing story of Hope!

http://www.blogtalkradio.com/rlrn/2010/05/13/the-padded-room–unlocked-and-unplugged

A Life without hope is like living behind the locked doors of a padded room. Ruby and Tracy want to help you find the hope needed to unlock those doors.

Two crazy girls, passionate about being real in the midst of their own real-life health and emotional challenges, are here to encourage you in yours.

**Disclaimer** Aside from being certifiable, the ladies from The Padded Room hold no certificates, licenses nor are medical professionals in any area related to mental or physical issues. Please seek professional treatment if you have questions or concerns about your health.

Blessings and Hope!

Craziness · Family · Health · HELL · Hope · Multiple Sclerosis · Ramblings · RANDOM · Sarcasm · Strength

Making it Through the Rain…

March 14, 2010 Tracy17 Comments

This blog is my blog. It is for me to share my life with my friends and my family and anyone who has an interest. It is to tell the stories of a crazy lady living with MS…moi!

When all the crap happened to me at the hospital I used it, MY blog, to reach out to my readers for support through a time that encompassed my world in a not so good way. I never wanted nor asked for your sympathy or pity. That’s not what I want. I needed…NEEDED support and friendship. That is why I shared my experience with you all.

This past year I have progressed more than any year previous, but still found the humor and tried to always add something in my blogs for a giggle. Even in my Hell Hospital blogs I tried to add humor.

During my stay in the big house, I was informed that I have acquired 3 new active lesions on my spine. With all the hospital terror and the issues of late, I put that aside and put it to the back of my mind. I am terrified of what these lesions could mean. No one can really give me a definitive answer. Is this the reason I can no longer use my walker and rely on my wheel-chariot now more than ever? Am I on my way to total paralysis? Again, no one knows. But either way I will deal with it as it comes. My inner spirit is strong.

There may be days I will be down, happens when you have a chronic illness that takes from you every day. But, as I have said before, NEVER confuse my tears or sadness for weakness as you will be wrong. I am strong in mind, heart, and soul. I do make it through the rain EVERY day of my life. I do this with the help of my family and my friends that accept me for who I am and not what they want me to be.

I was told I look for sympathy and feel sorry for me cards [whatever the fuck that meant]. In this case this was one of the ‘the pot totally calling the kettle black’ things. Sympathy and the feel sorry me BS is something I have no time for.

This is a blog about a woman who lives with Primary Progressive Multiple Sclerosis. Of course there will be blogs that might be a tad depressing. DUH!!! But, you will always find HOPE in my writings. I end every blog with ‘Blessings and Hope’! Why, because there always is Hope!!

I am only me, and will no longer apologize for that! No one should ever apologize for being who they are.

So, here it is, take me as I am and I will do the same for you. If you feel I have wronged you, talk to me, come to me and I will show you the same courtesy. I am not a liar as I have no reason to lie. I am not a manipulative person, but have found that many have tried to manipulate me. Do not do it again!!

I will now be back to my former sarcastic, a bit crazy, mentoring blogging in hopes that maybe I can help someone in a similar situation. Maybe we can help each other. And btw, I do still make some wicked tasty lemonade from the lemons life has given me.

Thank you for being here and reading me. As new details arise regarding the hell hospital situation, I will update. [if you do not want to read em, then move the fuck on] 🙂

And, as always…

Blessings and Hope!!