Sunday Talk with Alexandra Mars

https://anchor.fm/alexandra-mars1/episodes/Sunday-Talk-with-Alexdandra-Mars-e103up5

I am starting a new series for my podcast; where I will sit down, talking about things that are going on in my life and other topics. In today’s podcast, I discussed my goals for May and what is happening in my life. I hope you will check it out.

Feb 7, 2019

Yesterday, I was doing my grocery shopping. When a twelve-year-old boy called me weird as a grown man smiled, that was with him. The second man just kept pushing the cart.

I walked and moved differently because of the Rheumatoid Arthritis that affects my joints. I am still human!

This wasn’t the first time that a child made rude comments, but it was the first time made in front of adults. Those two adults taught that boy it is okay to bully somebody. That’s wrong!

Some Parents are not teaching children to respect others in the home.

Respect keeps our society sane. If future generations lose respect, then their future society will be filled with chaos.

It is time to teach respect.

Jan 19, 2019

Living with rheumatoid arthritis isn’t easy. Today, was no exception. I took it easy because my knees have throbbed all day since I woke up this morning.

I don’t know how to describe the pain. It feels like there is something putting pressure around my knees even if I’m laying down they are throbbing. When I move, the pressure and the pain intensifies; I want to scream.

So, I’ve put on a brave face not alerting my family of the ordeal or the pain because I don’t want them to worry.

Sometimes, I can’t hide it and just accept the offer of help. It makes life easier for me when I’m having a terrible day.

I focus on moving to keep my joints limber. The intense pain in the joints can become stiff, making me unable to move without assistance. I value my mobility so I keep walking.

When I was a teenager the years of therapy taught me to move despite the pain. Back then, it was harder for me to move the arthritis was more aggressive and fewer treatment options were available.

Back then, a terrible day affected all the joints including my knees. It took me forever to do anything or to walk anywhere and have people wondering what was wrong with me. I walked like an old person. People didn’t understand that arthritis can affect anybody at any age.

The internet has brought more knowledge to people understand arthritis can affect anyone at any age. The older I get, the less I hear of the myths.

The thing I struggle with the most is how fast the pain can hit suddenly. Here is an example, yesterday I felt good my knees ached, but the pain went away when I took some extra meds. I went to bed I felt good. No pain. Then this morning, I woke up with my knees and my hips throbbing. I took extra meds and the pain in my hips went away, but my knees continue to hurt.

The main factor is most likely the weather. A snowstorm hit my area earlier today. Now the temperature plummeted as bitterly cold air settles in for two days.

So, I will take it easy, take extra meds, watch some TV, and maybe read. I will pray tomorrow will be better.

Horse Pills

Why do doctors like to prescribe horse pills that people could choke on? I’m not talking about actual horse pills for horses. My rant is about huge pills to swallow. I’ve discussed in previous posts about dealing with rheumatoid arthritis since I was seven years old. The arthritis affects my neck and jaw joint, which makes it difficult to swallow huge pills.

Every few months, I need blood work done to check different things. This past summer, my blood work showed that my potassium was low. So, I added a potassium supplement, hoping to void a potassium prescription because the pills are huge.

About a week ago, I had my blood work done; the lab order indicated that my rheumatologist and my primary doctor wanted to check my potassium levels.

That Friday, I received a call from my primary doctor’s nurse, and she informed me that my potassium was low. She asked if I was taking any potassium. I explained that I was taking a supplement and how much. She said she would tell the doctor and to see what he wanted to do next.

Well, I knew what my primary doctor would prescribe a potassium prescription that were horse pills. An hour later, the nurse called me back to say the doctor had sent a prescription to my pharmacy and wanted me to start that night.

I asked, about the dose, and soon learned that the pills were horse pills. Then I explained to the nurse, I couldn’t swallow those pills simply due to the huge size. She told me to cut them in half. I explained, that I had and still had difficulty swallowing them. What most people don’t understand a huge dose of potassium comes in a tablet form and once the pill is cut, still leaves it thick, and there’s a bitter chalky taste afterwards. Then she suggested the liquid potassium which it tastes nasty. It does! Yuck!

I explained that I took it before and I can’t handle it.

The nurse lectured me the importance about potassium and how it could damage my overall health, which is true. She acted like there were no other options available to my problem.

I was mad, my temper was about to roar. I don’t like to be treated like a child just because I’ve health issues. I had explained many times to my primary doctor I have difficulty swallowing my pills, and when the pills are huge I can’t swallow them. I wasn’t against taking potassium because I need it, but I was looking at the situation that I would probably be taking potassium for the rest of my life; I wanted a pill that I could swallow.

During the nurse’s lecture it was up to me to discover a solution. So, I ask, what about a smaller dose?

She said, that I would have to take two pills.

That was fine with me.

So, I went to pick up my prescription and learned that my doctor order capsules, when wet, these pills are slippery. As a bonus, they are extended release I can take one in the morning and evening! Yay!

What I battle

Living with JRA (Juvenile Rheumatoid Arthritis) in my adult life is combating the crippling fatigue. Yesterday, I had a hideous day, since I spent my whole day lying down. Now, I’m paying the price my aching joints are refusing to move. 

JRA’s fatigue never dissipates, lurking in the dark crevices, and desiring an opportunity by launching an energy-draining web on me, causing a never-ending tiredness.

There’s my ADD mind longing to write or work on other tasks on my to-do-list. At times, the struggle can be overwhelming, where I desire to release a powerful scream, eradicating my frustration by rattling the windows.

What keeps me sane is focusing on my goals and tasks I want to achieve by reducing the stress and pressure. Like today, I’ll prioritize what I want to accomplish, and figure out which of my household chores needs to get done to keep my joints moving at my pace.

Today’s plan to create Deadman’s Planet episode 2’s premise before working on my household chores. 

Arthritis Awareness Month

I am writing on a subject I deal with every single day of my life, and there is no escaping from it. JRA is better known as Juvenile Rheumatoid Arthritis, and since May is Arthritis Awareness Month, I thought I would write about it.

When I was seven years old, in the mornings I would feel stiff and achy like my joints were frozen in time. My mother dropped me off at school, she noticed I was limping in the mornings and after school I was fine. She questioned me if I hurt my leg, and I said no. Then my mother took me to our family doctor, and the tests revealed the diagnosis of JRA had already begun attacking my knees and ankles. Since this was the early 80’s, there wasn’t much information, support, and hope for my family and me.

After my diagnosis, it seemed that society had written me off, I remembered the adults in my life whispering ‘that I would be in a wheelchair before I was twenty-one.’ I was determined not to let that happened to me, neither were my parents. Thank God for my parents.

One day, I went to the store with my mother, and I was perfectly fine at the beginning of the errand. An hour later, I was sobbing because my aching knees and ankles refuse to bend and the pain radiated throughout my body. My mother finished her errand, taking me home where I could recover. Throughout my childhood, I fought against a crippling disease that was determined to transform me into a living statue by using invisible chains to bind my joints in place.

At the same time, I dealt with a society who still clung to a 50’s attitude towards the disabled that shouldn’t be seen. Another side too, I was a bright, beautiful girl who walked like an elderly woman. Let’s face it; a child should be happy, healthy with a promising future. I wasn’t that child; my reality stunned people by eradicating their illusions about life in the 80’s leaving people petrified.

What I longed most as a child was to be set free from the pain and desiring acceptance. 

That’s what a person with RA or JRA craves for support, understanding, and acceptance to endure the everlasting war. If you know someone that is fighting this awful disease just ask what can I do, or give a hug to show your support.