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Today I didn’t grieve for my health issues

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How many days do I get up in the morning and say “Maybe my hands will work for me to get dressed without difficulties. Maybe I can get through my morning without a bathroom mishap. Maybe the pain in my body is manageable and doesn’t interfere with my quality of life. Maybe multiple sclerosis will behave and allow me to run some much needed errands.”?

Sometimes feeling lonely overwhelms me. I have sensed a feeling of abandonment more times than I care to admit. Not because of anything in particular, but just because I find it’s not that easy to get some much needed help for everyday events like preparing a meal or cleaning the house.

Recently I have noticed that I get upset easier. I have been in arguments or quarrels for no reason at all. My emotions are just on edge and have a tendency to overwhelm me. I feel like people I used to count on have moved away from my life which in a way is something to be grateful for… but still unnerving. I don’t need complicated people to complicate my already chaotic life.

Today I didn’t grieve for my health issues… I looked at my life and was thankful for my doctor which I will be seeing later in the day hoping it’s a good appointment. I looked out at how hard the wind was blowing and was thankful that I have a roof over my head, heat in the house and food in the cupboard. That I have friends and some family members who love me and contact me just to see how I’m doing.

My back porch has been setup with comfortable seating to enjoy the warmer weather when it comes and it’s been cleaned… the spring cleaning way. It was a much needed job to get done. Family came by unexpectedly and helped me out. That was a much appreciated thing to have happen. How can I show my gratitude? I feel like just saying thank you to everyone in my life isn’t enough gratitude, but it is.

I can do acts of kindness. I can perhaps slip a card of encouragement to someone secretly that I know can use it. Often, many people I see just want to talk to someone. That doesn’t cost a penny. For the most part, my time is free to give. Maybe some people won’t understand how special those kinds of times are, but I do and will still cherish them.

Today, ask yourself what you have done lately to show your gratitude for the day? Sometimes all that’s needed is our attention and looking around just to notice what’s actually there. There’s always something. What are you grateful for?

 

 

Finding the rainbow in the storm

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I woke up Monday morning to a strange sound coming from my bathroom. I wheeled myself into the bathroom and found water pouring from the bottom of toilet tank. There was at least a half an inch of water on the floor. I shut off the water behind the toilet, opened the tank and found the entire flush valve system needed to be replaced due to a faulty rubber washer. Not something I wanted to tackle.

I went to the local home improvement store and bought a new one then came home and changed out all the needed components. It was then that I discovered I needed a replacement braided supply line for the toilet that connects the water to the toilet. The plastic nut attached to the hose had broken off in the night. That was one of the reasons for the leak. I made a second trip to the store, made it home, fixed the toilet, opened the water line, adjusted the water level in the tank and all is well. No more leaks.

To repair the leak I had to mop up a ton of water from the floor. I got more wet cleaning up the floor than taking a shower. Of course I had to take a shower afterwards anyway but wasn’t planning that kind of adventure.

The unexpected happens though, doesn’t it? Sometimes it can be really sneaky and creep up on us, but it happens. Each day is a journey into the unknown. One day you may wake up and discover the sun shining and the next day find yourself in the middle of a storm that is spinning out of control. That’s just how life is. Add multiple sclerosis into the mix and it becomes an outright adventure.

We have gone through our entire existence up until this point in time knowing that each day is unique and filled with change. We try to find ways to predict those changes, but even the weatherman gets it wrong most of the time. Living with MS is no different.

One day you may wake up with a new symptom starting to develop…but you may not. You may notice numbness increasing…but you may not. You may feel more weakness…but you may not. Just as with life, MS changes day to day, and sometimes minute to minute.

When you are newly diagnosed, that can be a scary thing to face. Change isn’t easy. But as time passes you begin to find a routine in a life of change. As strange as that sounds, you do.

This morning, don’t focus on the storm MS has brought your way… look for the rainbow. All storms have them if you know where to look. Put your rain boots on and go splash in the puddles. Find something to smile about. Do something you enjoy. You might get wet in the process, but that’s all just a part of living.

Then dry yourself off and find something to smile about. I’m smiling about having the sense to be able to repair my toilet without calling a plumber to help. No huge bill to pay. Anytime that kind of thing happens it makes me smile.

I will never sugar coat my life with MS

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Have you ever had one of those days when you wished you could just curl up into a ball and hide away under the covers in bed because life was simply too much, too crazy and too overwhelming to bear? That was me yesterday. I woke up in tears… literally. That happens to me from time to time, only yesterday it hit me really hard. Harder than usual.

I hate when that happens. Sometimes no matter how hard I try to remain upbeat, positive and steadfast, I fail. It just goes to show that even people like me who strive to find the good in everything around them actually have times when they wish their out of control life could be put on hold and the pain had a pause button.

I’m human and I’m real. I will never sugar coat the difficulties of living with multiple sclerosis and I never want people to think that MS is a breeze to manage. Too many people out in the public don’t hear of the struggles we go through because too many MSers don’t talk enough about the truth of living with a chronic disease.

I am thankful for those living with minimal symptoms and that can handle the pain with ease at any given moment whether it be physical or emotional. But I know for a fact that’s not me. I talk about the struggles I face because I believe the more the public is made aware of what we experience, the more they will come to understand the reasons we have our unpredictable mood swings, cancel seemingly simple plans and spend so much of our time at home.

It’s not always easy for me to voice my needs. That’s because many times I don’t even know what I need in the first place. So when someone calls or stops by and asks how they can help out, I don’t always have an answer. It’s not because I’m being rude, antisocial or don’t want their help. Most of the time it’s because I simply can’t see past the pain in the moment to know what I truly need. That kind of thing requires too much thought and most of the time my brain just blanks out.

But I can tell you this, what ALWAYS helps is genuine care, concern, support and love. Those things help at any given moment and can be expressed through a simple “thinking of you” text, help around the house, offering to pick up some groceries, or just stopping by for a chat.

My greatest fear is to be forgotten in this fast paced, on-the-go world. It’s easy for that to happen too because many of us get to a place where socializing becomes  extremely stressful and is filled with too many uncertainties and obstacles.

Getting out of the house requires great planning and considerations that many people don’t really think about. Will the place I’m going to be accessible for my needs? Will I have quick access to a bathroom when needed? Will I be in a place where I can remain cool? If a meal is involved, will someone be there to help me cut my food? If I get too tired (which is normally a given in my case), can I leave early? Does it cost because I live on a limited budget and even small expenditures are impossible to afford?

Any number of questions have to be considered in order to leave the house. Some days those questions are easy to answer, other times they are simply too much to face.

I woke up yesterday with my laugh-box broken because the questions in life smacked me in the face as soon as I woke up. If that ever happens to you, give yourself a break and allow yourself the needed time to grieve. Grieving is a real part of living with MS, and it’s okay to have those moments. Just try not to stay there.

I had my good cry already yesterday. The world may never see my tears, but they will always hear my pain. I refuse to be silent in the struggle.

Never stop asking questions

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Making my way through the medical insurance nightmare has been a challenge since being diagnosed with multiple sclerosis. It wasn’t something I thought much about before MS came along. I never really got sick so health insurance and my own wellbeing just wasn’t a priority. Talk about a learning curve. I was thrown into things head first and then bounced around a few times before landing hard with a thud.

My life was suddenly filled with doctor appointments, medications, unpredictable symptoms and massive medical bills. I found myself in this new world of the chronically ill and I didn’t like it one bit. To be honest with you, it scared the crap out of me more than anything I had ever been through.

I think the first year after I was diagnosed, I spent much of my days in a mind numbing fog. I became overwhelmed with the vast amounts of information I found online about MS and the high costs associated with it. The more questions I asked, the more questions I had.

I became more concerned with being able to afford my co-pays and medical insurance premiums than with the latest phone apps or music downloads. I found myself searching for insurance plans that made MRI’s and durable medical equipment more affordable. I researched Medicare, SSDI and early retirement. I looked for ways to afford home modifications and accessibility aids.

I discovered that no one can look out for me better than me.

When I was searching for a supplemental insurance plan that would cover all the things Medicare doesn’t, the monthly cost was too high for me to be able to afford. So, what did I do? I got online and through asking tons of questions came across a foundation that helps people with MS pay their monthly insurance premiums. That was something I would have never known about if I didn’t dig around for answers myself.

I found that asking questions is the best thing anyone can do for themselves.

When the cost of my pain medication went up, again I got online and found that my Medicare drug plan had an exception form that can be submitted to request a lower co-pay. I had my doctor help me fill it out, sent it in and the cost of that one medication went from $45 a month to $3. The insurance company won’t tell you about that option in bold print on their home page. It’s something you have to ask questions about and search for yourself to find. Even the doctor didn’t know about it.

Then there was the time a few years ago when my powerchair was damaged in a car accident. I was okay but my chair got banged up a bit. I discovered that my homeowners insurance covers things like that. I was able to get a new chair to replace the broken one. Who knew homeowners insurance (or renters insurance) worked that way? I sure didn’t. Another lesson learned by again asking lots and lots of questions.

I don’t think I will ever understand insurance or how they calculate the costs associated with their services, but through asking tons of questions and digging around for answers I have been able to ease much of the costs associated with MS and living with a disability.

You have to be your own advocate, do your own research and never stop asking questions! You may not be able to control the progression of your MS but that should never stop you from taking control of your own health care.

Housing decisions while living with multiple sclerosis

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What do you do when your neurologist suggests that you move to an assisted living facility because your safety is more important at this stage with your multiple sclerosis progression? You don’t want to wind up in the hospital with a broken hip all because you fell and no one was around to help since you live alone.

What do you do when making meals becomes too difficult so you choose a bowl of cereal over making a well balanced meal? How about when taking a shower is more complicated because your hands won’t co-operate when you try to wash your hair or rinse the suds off your body after you lathered the soap. Or when getting dressed in the morning is such a chore that you decide to stay in your PJs the entire day. If you’re in anything else people that see you want to know why you are so dressed up even when wearing jeans and a t-shirt.

I’ve looked into the assisted living facilities where I live and the costs start at about $3,700+ a month which is not affordable for me and my insurance won’t cover the cost. I’m not on a government run program which would make it a little more affordable. I have Medicare and private supplemental insurance which thankfully covers all my medical bills to date but not long-term assisted care. There are limited long-term care housing that they cover.

I spent the weekend contemplating all of my options and of course I don’t want to lose my independence so I decided that I will hold onto my own home until I am no longer able to care for myself. It’s already wheelchair accessible and meets all my current needs. There are still some things that need to be improved on around me but for me it’s home. And besides the people in the assisted care facilities are much older than me so that’s another issue that I don’t think the facilities take into consideration. I’ve heard horror stories of younger people not fitting in and being miserable without people their own age around.

In-home care is much more doable but will still require help in paying the bill, but if I budget it correctly I can at least get someone to help me with bathing, meal preparations and housekeeping a couple of times a week. My current SSDI pays my monthly bills with little left over for anything else.

Thankfully a nurse comes to see me once a month to change my urinary catheter and I have access to the organization for weekly physical therapy and speech therapy in my home. I had put PT on hold but now that the weather is getting colder I am going to ask to start PT for my legs and hands. They always work to keep my muscles moving and help me to stretch my muscles which I need much more in colder weather anyway.

I decided that when my family is gone and I don’t have their support around me, I will sell my house and move to a retirement community. This way I won’t have to do any yard work, home repairs, meal preparations or housekeeping and there will be others around to do things with so I’m not isolated. I will still have my freedom to live the way that I want and hire in-home care to help when needed. That’s still a far away goal but one that I’m comfortable with.

None of those things may happen but I’m prepared mentally if they do. My goal is to live my life enjoying each day that I am given whether I’m weak and frail or full of energy and purpose. You always have a choice in how to live your life. Always expect the best to happen and do your best in every situation.

The constant motion of our lives means looking ahead, thinking through, making plans, and continuously checking off to-do list boxes. It means being one step ahead of something you can’t really know, planning for things without all the details and making decisions based on incomplete information. Each day with MS is an adventure in a world of uncertainties. MS may be taking away my ability to do everyday things but it won’t take my will to live the best life that I have.