chronic illness Archive

13

Guilt Ridden

Love

“Negative emotions like loneliness, envy, and guilt have an important role to play in a happy life; they’re big, flashing signs that something needs to change.” – Gretchen Rubin

Physically, I’ve been feeling okay, but emotionally I’m ridden with guilt.

I’ve come to realize, the more I have trouble accomplishing task, the more it leaves my loved ones around me, picking up my slack. And that deficiency makes me feel guilty, grateful and sad all wrapped up in one.

When I’m tired, my husband literally has to dress me. He also has to feed me and help me use the restroom. To be honest, from time to time, I lower my head in shame when he’s helping me in public because it makes me feel like a dependent failure.

I know, I should be celebrating I have so much support in my life. But instead, I sometimes spend my whole day grieving over all the things MS has taken away from me. I just get caught up in dwelling on my old life and career. I get so engrossed with my problems; it causes me to dismiss other people’s issues as trivial as compared to mine. I’ve never been a fan of running from difficulties but the pain from MS sometimes has me wanting to hide away from the world. The disease consumes me and all the independence I have lost because of it, rings in my head.

So when I’m feeling sorry for myself, I sometimes forget how much my husband has to give up for me. He use to jog in the park but doesn’t do that anymore because I’m afraid to be left alone. That sucks for the both of us. Especially, since he always makes sure I make it to all my workouts and physical therapy.

The problem is, I don’t know how to show him how much I appreciate him. So, what can I do to express my immeasurable love and gratitude? I need ideas.

What are some small things you do to show your love?

14

My Own Pace

MadeStrong

“In three words I can sum up everything I’ve learned about life: it goes on.” – Robert Frost

My body seems to find a new disaster every week, so why should this instance be any different. I just know it’s going to be one of those days.

I’m weak. I’m tired. I’m frustrated.

It’s like the odds are stacked against me. My life is starting to feel like a game and I keep getting sent back to start.

The world can move very quickly. Because of that tempo, I find myself being absent-minded for more times than I would like to admit. I see everyone moving at the speed of light, while I’m slowing down. I get lost during basic conversations. My memory has begun to leave me. I’m not able to construct whole ideas. My thoughts are choppy images and concepts that I try to piece together. My reasoning is impracticable as I struggle to think of the words to use in simple everyday situations. I am constantly apologizing and asking people to please forgive me for my lack of attention to detail.

I’ve become detached from everything because my mind is focused on more pressing efforts. Like trying not to fall as I attempt to go into the next room or remembering why I was even going into that room.

Between texting, phone calls and the Internet, everyone I know is always “plugged in”. They are constantly moving. I’m starting to realize, I have to live at my own speed. I can’t keep up with everyone else nor should I have too.

Once I learn to give up what I want, for how it is, I will be in a much more satisfying position. Then I’ll be able to experience the sweetness, not just the bitterness of life. And that can only happen when I start living at my own pace.

26

Another Day, Another Drug

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“What can we take on trust in this uncertain life? Happiness, greatness, pride — nothing is secure, nothing keeps.” ~Euripides

I am changing my MS medicine after having a recent consultation with my medical team. (By the way, I only have one doctor but saying medical team makes me feel important.)

The last time I was in the hospital, the doctors executed an MRI. I am secondary progressive and my current neurologist has not ordered a routine MRI in a while. Personally, I think it’s because there are no drugs approve specifically for progressive patients. When my doctor received my results from my hospital visit, he quickly ordered another repeat MRI because he saw something abnormal.

I was worried and my fears came to fruition when he informed me I had enhanced lesions on my brain.

He suggested a medication change and gave me a few days to do some research and think about it. The most surprising thing I learned was the new maintenance medication he suggested is also used to treat certain types of cancer.

A couple of days later, I agreed to the treatment and set up my first infusion session.

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I reported to my local hospital’s infusion room and I was there from 8AM until 5:30 PM. Yes, 9 hours! The medicine is administered through IV infusion. Luckily, it is only once every 6 months. Besides being bored, everything went smooth.

Changing treatments is routinely done in multiple sclerosis. I know many people who have been on various drugs. This is especially true for those who have a more progressive form of MS. But I don’t know of many MS patients on this particular treatment. That worried me, but I still pressed forward. I just really hope this works because the whole changing medicine again thing has taken a lot out of me.

26

The Fall Girl

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“Pain is such an uncomfortable feeling that even a tiny amount of it is enough to ruin every enjoyment.” – Will Rogers

Saturday night, while taking a shower, I fell. The weird thing is, I was sitting down when it happened. I was on a bench in my shower washing myself when I lost my balance, tipped side ways and ended up face down on the tile floor.

The pain was incredible. I screamed and within seconds my husband rushed in to help me. He asked me if I was all right. I wasn’t sure so he sat me up and inspected me for damage.

I had cuts on the inside and outside of my bottom lip. And yes, blood was flowing and quickly filled my mouth. I felt a little lightheaded but the feeling was fleeting. As I sat on the floor, I ran my tongue around in my mouth. I could feel something was out of place. I glanced around the room and saw what looked like a tooth next to the sink. Before I could panic, my husband instructed me to smile. It revealed that I had chipped my front tooth.

As bad as that sounds, besides the pain, I felt reasonably well for such a severe fall.

Over the years, I have taken many precautions in my daily life to prevent falls. So I thought I was fairly safe. But wow, this took me by surprise. For goodness sake I was sitting down! Who falls while they are sitting?

I realize the busted lip and chipped tooth can be fixed. So I feel fortunate and grateful to be all right. But my memories of the pain from that fall will stay with me for some time.

NicoleTooth

11

Living On The Edge

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“Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad.” ― Henry Wadsworth Longfellow

I feel as if I’m slipping into depression. I know the signs. Not only because I’m a nurse by profession but also because my own father has dealt with it the majority of his life. Over the years, he’s come a long way. Of course, if you ask my mother, she may have a different story to tell. She’s the one who has to live with him everyday.

So, I have been proactive about this slide down hill into that unforgiving black hole. I returned to my psychiatrist. I’m trying to avoid sleeping all day. And I started reading again.

What made me even realize I may be having a problem is my support group leader asked the question to everyone, “What do you do to improve your quality of life?” I personally had a list of answers, which included therapeutic horseback riding and visiting the local gym as often as possible. But these things don’t always work because when it’s raining there is no horse back riding. And here in Louisiana, it’s always raining. Plus, sometimes I just cannot make it to the gym because of other obligations or I’m just too tired.

And although I have my husband, I just get plain old lonely. It seems as if the lives of my friends are rolling along smoothly. While I’m stuck, stuck in the muck of multiple sclerosis. And it stinks.

I haven’t been doing the things that I usually enjoy. For example, it took a lot for me to even blog today. I spend a lot of time resenting those around me that are physically able-bodied. This is wrong, selfish, and unhealthy for me. And I know this. But that’s how my mind works when I’m living on the edge of depression.

34

Never Apologize

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“I felt sorry for myself because I had no shoes — until I met a man who had no feet.” ~ Jewish Proverbs

I’m Dying!

Or at least that’s what I feel like.

MS tends to put me in a fragile wavering psychotic state.

Between the optic neuritis, numbness, fatigue, dropping things, tripping and falling I think I may be losing my mind.

My dream for normal used to be so strong but now it is slowly withering away. Each passing day brings me less confidence that I can get my former life back. I always keep a little hope alive but that may be because I can’t face the reality that I will never get back to normal again.

MS just makes everything suck sometimes. Like when I can barely push my wheelchair two feet without getting tired. Sometimes I can only do two rotations before my arms begin to give out. I don’t think that hardly being able to move about is a good sign at all.

Despite that limitation, since my home is small, you would think that making it to the restroom would be easy even for someone who occasionally has trouble maneuvering around. But that’s not always the case.

On one of my particularly bad days, while trying to stand, my right leg decided to give out and make me better acquainted with the floor. I was trying to go to the restroom and ended up on the bathroom tile, only a few feet away from the toilet. To further humiliate myself, while face down on the floor, I could no longer stop myself from urinating. It began to trickle and I knew I had only seconds left before I was at the point of no return. I crawled and actually made it to the side of the toilet but that was about as far as my arms could pull me. Then my bladder could not hold it back any longer. Suddenly the urine broke free and it was a full-blown gusher.

I began to cry.

Yes, I was lying on the bathroom floor crying and peeing at the same time.

The worst part was that I could hear my husband, Tommy, coming into the front door. He was back from a 30-minute workout at the gym. He rarely leaves me at home alone for more than an hour. I knew he would be heading straight to the restroom to cleanup after his workout so I only had a few moments. I quickly tried to close the door by kicking it shut but my legs would not respond. Before I could think of a plan b he had turned the corner and was standing over me.

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The funny thing about Tommy is that he always appears so stoic.

He asked me, “Are you alright?”

Totally embarrassed, I shook my head yes and continued to softly cry.

He lifted me to my feet and walked me over to the toilet. I sat there while he helped me get my clothes off and then assisted me as I got into the bathtub. I ran the water and he got me towels. As I sat in the tub soaking he cleaned the urine off the floor. It was taking him a while as it had spread throughout the bathroom. I sat in the tub watching him. I started to think that he didn’t sign up for this. If I were only normal again this would have never happened.

I just kept saying, “I‘m sorry. I‘m sorry. I‘m sorry.”

From his hands and knees while crouching in urine, he looked at me and said, “Don’t ever apologize for having MS.”
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This article was first published by MultipleSclerosis.net.

9

Biogen’s PLEGRIDY

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The Food and Drug Administration (FDA) approved Biogen Idec’s multiple sclerosis drug Plegridy as a treatment for adults with relapsing forms of MS or RMS. This encompasses people who experience periodic MS attacks, such as those who have relapsing-remitting MS or secondary-progressive MS with relapses.

The new drug was green-lighted based on the results of a 2-year long global ADVANCE study. The research included 1,516 people with relapsing forms of MS. It showed that PLEGRIDY reduced annualized relapse rates at one year by 35.6% in patients getting injections every two weeks and by 27.5% in those on four-week dosing compared with placebo. It met all primary and secondary endpoints by significantly reducing disease activity including relapses, disability progression and brain lesions compared to placebo, and showed favorable safety and tolerability profiles at one year.

Similar to Biogen’s multiple sclerosis drug Avonex, PLEGRIDY belongs to the interferon class of medicines. But unlike Avonex, PLEGRIDY has an extended half-life, allowing for a less-frequent dosing schedule. It is dosed once every 2 weeks instead of once per week.

PLEGRIDY is administered with an autoinjector or a prefilled syringe subcutaneously instead of intramuscularly. This means PLEGRIDY is injected under the skin with a smaller needle, which can be less painful.

Biogen expects PLEGRIDY to eventually replace its older best seller Avonex, which has compiled global sales of more than $1.5 billion in the first half of this year. They also want to take market share from other rivals even as overall sales from the class declines with the increasing popularity of oral treatments. The company said it would continue to support Avonex for patients who are comfortable with the treatment and not looking to switch.

The most common side effects to PLEGRIDY are injection site reactions, flu-like illness, fever, headache, muscle pain, chills, injection site pain, weakness, and joint pain.

PLEGRIDY is expected to be available by prescription in mid-September 2014.

So far, the news about PLEGRIDY seems very promising. I think it’s encouraging to have additional treatment options available. Too me, PLEGRIDY sounds like a new-and-improved version of Avonex. It’s especially great that the injections are once every two weeks.

The question is, overall what does this mean?

Does the development of new drugs like PLEGRIDY bring us closer to a cure?
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*Source- BIOGEN IDEC’S Press Release- Friday, August 15, 2014 6:32 pm EDT http://www.biogenidec.com/press_release