Struggles

Today I am struggling mentally with anger, sadness, and hurt. Questions of why me, will this ever end, and how much more can i handle?

Having MS can put you in some pretty dark places, places I try to avoid. Like everyone else, I have days too and it is ok, just as long as you don’t let it get the best of you.

Ms has taken, my dreams, my ability to be the mom I wanted to be, the wife I wanted to be, a successful working women and the very independent confident women I once was. I wanted to provide for my family. I wanted to be able to give my kids the best childhood ever, the super mom l, and the mom others were jealous of. I wanted to love my husband like he deserves to be loved, and cared for romantically, emotionally and physically.

Now, I can sit here and tell you all my daily issues, problems, and struggles, but it’s not helping me feel any better. I’m terrified of what next year will bring, for my health, my family and me but I also have faith I will be ok. I am not dying, even though I feel a huge part of me has died and I will never see it again. My favorite quote is “courage is being scared to death but saddling up anyway,” by the only and only John Wayne. I am scared to death about my future with ms, but everyday, I get up get dressed, and take on another day the best I can. I smile and push thru my rough days, as I know I will have a better mental day in the near future. I am a fighter, I am strong, and I am not a quitter.

So if you are struggling today, just know you are not alone! You have fellow MSers or strugglers out there trying to push thru just like you.

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Be positive

I hear people with so many different issues, health problems or diseases say things like “you don’t understand what I am going thru” , “my symptoms are not the same as yours” or “do not compare me to you, we are different.”

Yes, we all may have different elements to our lives, causing us pain, but my pain is not better or worse than yours. I truely believe how we handle and deal with the fact that we have MS or any other disruption is how it impacts our outlook on life.

You can choose to see all the negative this disease has caused you or you can choose to look at the positives that are going on in your life.

I was 29 when I received my official diagnosis. In 10 years, I have gone from running to barely able to use a walker. Majority of the time I get around using my scooter. I am considered to have Primary progressive multiple sclerosis.

Now I could have chosen to quit working and collect disability, but I never felt that to be an option. My hands still work, I can still see and my brain is intact even if it is invaded by lesions. I am too young to stop working. Luckily for me, I have fantastic coworkers and bosses who understand. I get up every day, go to work, do my job as a Billing Specialist in a very busy construction company. I work a 40 hour at least work week too. I made the choice to keep working, because i know for me, i would go crazy staying at home.

Focus on the good. I truely believe there is always good in every situation, you just need to choose to find it. Figure out the new you and what makes you happy. Get yourself a good, positive, encouraging support group. Every negative find two positives about your day, your life or just your abilities.

We have MS, but MS does not have us!! You are not alone! We are MS Warriors!!

1st Full dose of Ocrevus

Its been a week an a half since my 1st full dose. The infusion went well. I had a slight headache. Other than that, the infusion went well. Out of the last 7 days, I have been able to climb 1 step with right leg and 1 with my left. Today I almost made 2 steps with my right leg.

I can also tell now from having steriods 4 separate times, I absolutely hate coming off of them. They made feel as if I was extremely depressed, nothing felt right and I just wanted to cry. If you have ever been depressed you will know what I am talking about, but recognizing that I feel this way about two days after the infusion or ending the steroids, I know it will pass. I chose to stay in bed and sleep it off.

I can say I am happy with Ocrevus and for me I am glad I was able to give it a try. I will do two more treatments and possibly switch to something else .

I am patiently waiting for a reversal drug more than a cure, unless that cure will fix what MS has taken from me.

I hope you all are staying positive, fighting and pushing thru everday. We are MS warriors!!

Yes, MS sucks

Yes, MS sucks, but you do not have to let it define you. You are strong! You are still breathing! You are a fighter!

Maybe you even still can work. Maybe you can still walk without assistance or a break. Whatever you can still do is amazing and a reason to be happy!

Find something that makes you smile. Find that one person or thing that will help turn your bad day into a better day.

No matter your capabilities, there is always something you can find that you enjoy to take your mind off the laundry, dishes or cleaning you just do not have the energy for. “If there is a will. There is a way!! ” I truely believe that statement.

Find the time for you to just enjoy you and what you are capable of. I can’t walk very well anymore but I love shopping, so a scooter it is! I can go all day long and feel I’m still capable of having a good time.

Don’t stop doing the things you love, just adapt to new ideas or ways, to get you out there and doing what you love. Trust me…you won’t regret it.

You got this and you are not alone!! Be an inspiration and show the world you can take whatever this disease or world throws at you!!

MS sucks, but it doesn’t have me!!

Taking one day at a time

Taking one day at a time can be very hard at times with MS. As my MS has progressively taken over my body, without my permission. I have gone from running alone to barely walking with a walker in ten years. I have found it difficult to not think about what my future holds.

I am still working full time, with the wonderful help of my husband and coworkers, but how much longer can I do this, I ask myself? Everday I get up, go to a job I love, that makes me feel so good to be a part of something, that I can’t imagine not being a part of. I know one day, it is a big possibility that, I am going to have to give up my job because MS has taken so much from me that I will not be able to do my job. I can’t focus on when my last day will be but I have to focus on today and I can still do my job, today.

So many what ifs can go thru my mind on a daily basis. What if I get let go from my job? What if I break a hand or a leg? What if I can’t bathe myself? What if I lose my gripping capabilities? What if i die before my kids are gr

own or married? These are all depressing, scary thoughts, that may or may not happen, which I do not need to waste my energy or time on. What if they find something that will reverse the damages of MS? I will have focused on the bad what ifs for nothing. I have better and brighter things to focus on. I have a husband that loves me, two beautiful children, family and friends that support me, what more do I need.

Live in the moment. Show the ones you love that you love them. Enjoy what you can do. Find what makes you happy, despite MS, and take one day at a time.

What you take in

I worry about taking to many pills, not so much vitamins, but pills that have to be prescribed.

My opinion….doctors are suppose to be there to help you, some are but most doctors I think they care more about their kick back from pharmaceutical companies. I think people trust and believe their doctors wouldn’t prescribe them too much medication, but you have to be in control of you and what goes in your body, too much medication can harm you.
Everything you ingest effects your body, some good, some bad, it is up to you to decide what is good and bad. I’m a firm believer natural is better, but there are times you need something stronger, but that something stronger comes with side effects. Those side effects could make other things worse, while fixing the issue you went on it for. Too much medication and not enough of good food, minerals, exercise and vitamins could make you more sick. Treat your body the best you can before you add medication.
Trust me I’m not the healthiest person but I can tell what makes me feel good when I have it and what makes me feel worse. Some Vegetables and fruit seem to boost me, others wear me out. Such as anti-inflammatory verses inflammatory. Junk food may taste good but it makes me feel sluggish and really tired. Sugar or caffeine can give me a high for moment, but then the dizzy, lightheaded, upset stomach and just want to sleep kicks in.

Bottom line choose carefully what you take in.

2nd 1/2 dose of Ocrevus

Friday, September 14th, was my 2nd 1/2 half dose of Ocrevus. My husband and I left our home at 6:30 am, to drive to Columbus, Ohio to the Ohio State Neurology for the infusion. We arrived promptly 9:45 am. My husband, Ryan, went to get gas while I checked myself in, since I knew where I was going.

I use a scooter so I headed right in the building, up the elevator to the 3rd floor thru the double doors into the infusion department. I was so proud of myself to do this on my own. Once I arrived, a nurse, said “oh you forgot to get your bracelet downstairs.” With little disappointment I went back downstairs to get my bracelet. I had to wait for it about five minutes, so not so bad. Go back upstairs to the Infusion department, they promptly place me in space 2.

The stiff black leather reclining chair with brown arm rests and a tray attached seemed newer than the one I had last time. It still wasn’t the most comfortable chair, but it will have to do. The space was decent size, being I had my scooter to deal with. I had a Samung 32 in tv and an extra hard offwhite chair for Ryan to sit in.

The nurse came over promptly with my iv saline solution, gave me two tylenol and two benadryl. She was looking at my arms trying to decide where to put the iv. Last time I had a blown vein in my left and I didn’t want it there and the right arm halfway between my wrist and elbow is where they did place the iv, so I didn’t want it there again either. The nurse sees in the bend of my right arm I have nice big puffy vein and smiles and says, “oh that’s a good one, can I use that one?” I said, “I really didn’t want the iv there, because I use my right arm so much more than my left.” I could see the disappointment in her face. She says, “I can put up higher so it wont be in the bend of your arm.” I could tell she really wanted to put there. I said, “I can tell you really want to put it there.” She says “Oh I won’t if you do not want me too.” I could see the disappointment in her face. I knew it was my choice, but I was also thinking, maybe she is still learning to do iv’s and the bigger the vein less chance for her to screw up, so I said, “ok. Let’s put it there.”

After a little bit talk, she got started cleaning the area with the little stick with a round foam soaked in. I assume alcohol. Gets the iv in just above the bend of my arm. She asked,”do you bruise easy?” I said, “No.” “Oh, I hope I didn’t blow this vein,” said the nurse. She called for a fellow nurse to come check it. The 2nd nurse looks at and says it’s fine, I will just have a little bit of bruising. I said, “it burns.” They injected some saline in hopes to relieve the burning. Three tubes of saline and one tube of steroids later I felt better.

The nurse gets my Ocrevus to inject into my iv bag. I’m now ready to start the slow 4 hour drip of my 300 millagrams of Ocrevus and its 10:30 am.

Now that I was settled in, I shared on Facebook I had checked in to the Ohio State University Neurology and “I’m ready.” Turned on the tv to see if anything good was on. Flipping thru channels and found Who wants to be a millionaire, is on, watched a couple questions, and turned the channel. I didn’t find anything I wanted to watch. I ended up watching some show on Lifetime, about a boy whom went missing and returns ten years later at 18 years old called, “Wrong Boy.”

Around noon I had my husband go down to the cafeteria and buy me a bottle of water and broccoli soup. The soup was delicious, but very hot. It took me sometime to eat it.

I started to notice I was getting some itching on my right hand. I asked the nurse to give me some benadryl. I was given a dose thru my IV. Which as soon as that benadryl hits your bloodstream you feel it.

As I lay there, not even five minutes later I realised i had to use the restroom. I can barely walk as is, but with the benadryl I felt really drunk and could hardly function. Heavily noted, to go to the restroom before you get the benadryl. I made my husband walk with me, just in case I needed help, being I did use my scooter. My concern was getting out of the bathroom.

I new it was going to be rough. Once I drove my scooter in the restroom and get the door shut. I struggled to get my legs to move. I really had concrete feet, in other words my feet felt so heavy I couldn’t move them. Finally I was able to move with the help of handicap bars. I get myself adjusted well enough to sit down, and do my business. Now time to get back up, think it to myself, “I can do this!” Trying to pump myself up, while worried. “How am I going to do this?””ok,let’s do this!” I was able to rest my arm on the horizontal bar while grabbing the vertical bar to pull myself up. Thank God they hard those bars, because I wouldn’t have made it.

My legs were weak and stiff. Trying to keep myself standing long enough to button my pants. It took me about 5 times, but I succeeded. Now the struggling of moving my feet around to sit back down on the scooter without missing the seat or sliding off. Trying to psych myself help. “You got this!”and with alot of effort and energy I got myself on my seat and had to struggle to get my legs to bend to get them on the scooter one at a time. Man that was rough, but I did it, all by myself! Woohoo!

I leave the bathroom to go back to my infusion chair. Only a few more hours to go.

The rest of the infusion went smoothly and I headed home about 3:15. Still a little tired from the Benadryl but 2 hour car ride allowed me to sleep for a little while.

Once I was home I felt pretty good just slight headache. Saturday and Sunday I was pretty weak and stiff, but otherwise I was doing well.