Fighting Multiple Sclerosis

Saturday, January 13, 2018

Heat Intolerance without an Air Conditioner

Hi everybody, it's been so long since I've posted. I think it's time to start things back up again. I missed writing as I've been on so many journies in life.

I want to talk about heat intolerance and what happens to our bodies because it's something I deal with all year round. Heat intolerance in the winter? Yes! Just today, the humidity was so bad inside my place of employment that the dreaded fatigue began to hit and rather quickly. Just 1/2 degree rise in our internal temperature can turn us into wet noodles. I would love to hear what all happens to you during a temperature hike. I get cog fog, incredibly fatigued to the point I have blacked out and my extremities turn into wet noodles.  Heat intolerance is a common issue for people living with multiple sclerosis (MS). Not only are they, in general, more sensitive to heat, but heat can also make their MS symptoms considerably worse.

I bring up this subject for two reasons. 1. There needs to be more awareness so that others can be of help when we become over heated and 2. The air conditioner stopped working in my car. This past summer I found myself not even going out if the temperature would get too high. I watched my son cry as I would tell him again and again that I couldn't go out or take him somewhere because I didn't want to risk our lives while driving during the heat. By the end of the summer I was driving around with a giant cup of ice water so when I would begin to become over heated I could poor it down the back of my neck.

The reason I bring this up is, like I mentioned above, my air conditioner went out in my car among other things. All of this happened at the worse possible time. I was medically put out of work for 7 weeks. All of the serious repairs have been completed (thanks to some amazing people and their selfless generosity)except the AC. The air compressor and belt need to be replaced and like so many others with MS, I live on a fixed income. Fixing my AC is more of a pipe dream for me. I simply can't do it alone. All my bills are paid and my son is taken care of I just simply don't bring in enough to dish out $1,000 for the repair. I hate that we have to choose things like making sure our bills are all paid or fixing an air conditioner that could literally change everything about my summers and help my health. My health just wont allow me to go out in the summer without a properly working AC.

I have started a GoFundMe and I'm hoping by mid spring I will have raised enough to have the repair completed so that I can experience a summer outside of the house.

Any little bit helps and sharing is always a big help. Share the blog post or the GoFundMe itself.

I hope all of you have been doing well. Thank you again for reading my blogs.

Monday, August 22, 2011

Learning To Live Again With Multiple Sclerosis!

WOW! Things have changed since I last posted. Have you found yourself in a slump or depressed telling yourself everyday "tomorrow I will do it" or "tomorrow will be better" but it just doesn't happen? I was there! I was stuck in what I call my funk. I woke up one day and said "NO MORE". No matter how much it hurts I will Learn To Take My Life Back. You see, I had let Multiple Sclerosis take my life from me but not anymore. It was like I was stuck inside myself screaming to get out.

It all started back in October of 2010 when I went in to my local general practitioners office just to get my pulse and blood pressure taken. After sitting for 15 minutes with no movement they came in and took them both. The poor nurse nearly fainted and did it again then ran out of the room. She came back with a wheel chair and said "your doctor wants you in the Emergency Room NOW". After lots of IV fluids and medications to get my pulse and blood pressure down they admitted me for all the wonderful testing. Thank God I wasn't having a heart attack. See we lost our father when he was just one year older than me now at 34yrs old of a massive heart attack.

After being admitted they did all the stress test. I barely started the stress test and they hurried and got me off of there b/c they just knew I was going to have a heart attack. After that hospital could not figure out why this was happening they transferred me to another, bigger hospital in the Cities. This hospital just knew I had what my fathers fate was. They then decided I had to have and angiogram to see if my artery needed to be ballooned. Come to find out my arteries were as clean as a new born baby.

During my stay in the hospital a picture was taken of me. At the time of the picture I was shocked to say at 5 "8" I weighed 290 pounds. When my mother seen me she told me "Nickey, if I didn't know it was your truck you were getting out of I would have never known it was you". She didn't even recognize her own daughter and neither did I. This picture did something to me. I didn't know the person I was looking at. I stared at myself in the mirror and had no idea who that person was anymore. I didn't recognize her. I was over medicated, over weight, depressed and ready to give up. Through my faith and looking at my little boy who needs his mommy so bad I said once and for all "NO MORE!!"

That day I started taking my life back. Without telling anyone of my plans I started my journey. I began by doing a complete lifestyle change by getting off of all those medications I didn't need to be on and eating the healthiest foods I could find. At first I couldn't add any exercise b/c I was at such a weight were just walking to the kitchen would cause me chest pains. I had also found out that one of the meds they put me on caused depression so I immediately got off of that one and OMG did the clouds clear. I could think again! I could live again! I could Love again, not just others but MYSELF!

I was so overweight that my cholesterol was off the charts. They couldn't even calculate it. My blood pressure was crazy high and my blood sugar was on the brink of me being a diabetic. Just from changing my portions and what I ate I lost 60 pounds. After the 60 pounds was off I began exercising to get my legs working again. I am happy to say that I am now down 80 pounds and weigh 210. My goal is 150-160. So I still have some work to go.

I now juice all my fruits and vegetables, which is so good. I also upped all my vitamins. I had my labs drawn again and I am happy to say that everything came back perfect. My blood pressure is perfect, my cholesterol is perfect, my sugar is in the normal range but a little high. I no longer eat meat unless it is turkey or fish and eat or drink lots of fruits and veggies.

My latest add on to my journey has been getting a recumbent bike. All those spasms I was having in my legs are now cut in half if not more. I make myself do a minimum of 30 minutes a day and if I am having a good day I do an hour. My energy is up and I am feeling better. Don't get me wrong MS'ers I still have all the wonderful pains and aches, fatigues and struggles that come with MS but life is so much better. For the first time in 4 years I feel like I am living again. You see it's all in how you look at yourself and were your mental status is.

With all this said I want you all to know that no matter your weight or if your in a wheel chair or using a cane like I was YOU CAN DO THIS. Never give up and always push yourself to do something everyday to make yourself feel good about YOU. It can be something as small as looking in the mirror and saying to yourself "I love myself and like loving myself". If you feel lost or hopeless remember you are never alone and Never Give Up. I am a spiritual person and I believe through mindful breathing, meditation and pushing ourselves past that mental block we can get our lives back. Never say Can't but always try.

To all my readers out there we may have never met or may not have even spoken with one another but please know you are not alone in this battle called life. Life is so much better when we fight for ourselves. I will be writing more about the juicing and bike riding.

With Love and Hugs NEVER GIVE UP!!

Wednesday, May 25, 2011

Something Happens!

Something happened to me this weekend. The Cystic Fibrosis Foundation was brought to my attention. I had asked how I could be a help and my friend told me about a walk coming up, right here in town. I have to admit, I did the what most people do "Oh yeah, that would be great". Then kinda hit and miss on the topic. Two days prior to the walk I felt a push to find out more and did so. The push or pull or tug or whatever name you want to call it had it's grips on me and I knew I had to do this walk. I felt so pulled to do this walk for a little girl named Emma! So with less than 48hrs left till the walk began I got myself registered and actually wondered, how was I gonna do this physically and financially. I just kept thinking of Emma and how strong she is and that I had to find her strength within myself and do what ever it took to make this walk happen.

I began doing fundraising on Facebook and I made it were over 7,000 people could donate. The entire first day I didn't raise a dime. The 2nd day I woke up on fire to get the fundraising begun. I finally got my first donation by a very special mother and also a fellow MS'er. Along with her, 2 more friends donated. The 3rd day, walk day, I woke with a mission that I was going to raise the last bit and before I knew it 2 angels donated and off to the walk we go.

I was very worried and heard an excuse go through my head but my thoughts always staid on Emma and how important this walk is for her. It was raining scattered T-Storms all morning. When we arrived at the walk it was poring and we all got soaked but that wasn't stopping the people from coming and we were so excited now. Pulled by God and Emma to do this walk! Ten minutes before the walk the sky opened up and allowed the walk to happen. We began walking and enjoying all the new people we were meeting and how excited everyone else was for the cause. The rain stayed away the entire walk. Once we finished the walk the sky decided to send down T-Storms again followed by Tornado. We had just maid it out of down town and I was so worried about the other walkers but thank goodness they only got the storms not the tornado. Isn't it amazing to have the skies open just long enough for this walk to happen for Cystic Fibrosis?

So by now your probably saying "but Nickey you have PPMS, you can't do this walk". Well let me tell ya, when you have little Emma and God on your mind you can do anything. This walk ended up being 3 miles long. I told myself at one point,"Nickey, you can't do this long of a walk" and I even said "you made it and that counts right?". Well let me tell you NO, NO it doesn't count not when you have a child depending on you. I have never felt so much joy than I did while walking for Emma. With every step there would be a little discomfort and when that happened I said to myself "Look at what Emma pushes through every day" and "Dear God, please use my body to complete this walk to raise awareness for the Cystic Fibrosis Foundation". Keeping God and Emma on my mind made every step so easy and pain free. Now you may not believe in God and that's fine but you have to believe in Emma. When thinking of Emma you will become transformed into almost super human and can push trough any pain to make sure you don't let her lose hope.

For my story, I owe all to God and I want NO credit b/c it truly wasn't me. I thank little Emma's parents for allowing us the honor to do this. If you have MS and you think you can't do something I have something to overcome that. Find a charity or a foundation that you can donate your time to. This cause must mean something to you and drive you beyond all pain and all of MS's troubles. Make your cause something so dear to you that you feel called from God to walk for them. Yes I had my cane to support me and I encourage you all to bring your canes, walkers, wheelchairs and motor scooters. Because you see, it's not about how much pain your in or how bad MS is attacking you. In fact it has nothing to do with you and you should never worry about how you look or come across to others b/c this walk is for the charity. People aren't going to be looking at you for you, there looking at you for raising awareness to that cause. You have to let all your pride go and leave all your insecurities at your car when you get out and close the door on them. Once you have made this an experience for the cause that you are letting yourself donate your times You are giving them your love and your broken bodies for there cause, It's then you will start to feel that wonderful blessing that you get when you give of yourself without any expectations. If you feel yourself wanting to do something bigger than yourself but you don't think your body will let you please remember my story. God works wonders in us all even when our bodies are broken and don't feel well.

I could have not done this without God! God put everything into motion and allowed me to make it. I want all of you out there to find your own little Emma. Get online, open your phone book and find that cause that makes you want to be a part of something bigger than yourself. There has never been great exercises for me but by the power of giving yourself anything can happen. Something Happened for me!!

If the Cystic Fibrosis Foundation is something you are looking at doing I have added the website were you can contribute directly to them online or find local walks. I am also adding a link for the National Multiple Sclerosis Society b/c this one is near to all our hearts.

Cystic Fibrosis Foundation:

National Multiple Sclerosis Society:

Little Emma is doing well and loves to play on computers with her mommy and daddy. The walk went great and is truly a blessing to be able to do something like this for someone else. Please never go in expecting something b/c it's then that you will receive absolutely nothing. Go in with the right reason, the reason for the cause and you can do anything and will receive the ultimate gift in return, joy and love!

Please remember that no matter our mobility and our pain level we can still push through to some extent if the cause it right. This is my story of encouragement that I pray can inspire others to donate there time to some great causes.

Friday, May 13, 2011

Depression And Multiple Sclerosis!!

Do you ever have the feelings of:

*Loss of energy
*Feelings of hopelessness or worthlessness
*Loss of enjoyment from things that were once pleasurable
*Difficulty concentrating
*Uncontrollable crying
*Difficulty making decisions
*Increased need for sleep
*Inability to fall or stay asleep at night (insomnia)
*Unexplained aches and pains
*Stomachache and digestive problems
*Decreased sex drive
*Sexual problems
*A change in appetite causing weight loss or gain
*Thoughts of death or suicide or
*Attempting suicide?

Everyone at one time or another has felt depressed, sad, or blue. Sometimes the feeling of sadness becomes intense, lasting for long periods of time and preventing a person from leading a normal life. This is depression, a mental illness that, if left untreated, can worsen, lasting for years and causing untold suffering, and possibly even resulting in suicide. It is important to recognize the signs of depression.

What causes depression in MS?

Why are MS patients at such a high risk for depression? The easy answer to this question is that living with MS in and of itself is depressing. Studies show, however, that those with other serious chronic medical conditions do not suffer
from the same high rate of depression as do those with MS.

Depression is very common in people with multiple sclerosis (MS). Symptoms of depression can even be severe enough to require medical intervention and can affect up to half of all people with MS at some point during their illness. Please talk about your feelings. Confiding in a trusted friend or family member about difficult feelings or thoughts can often improve your mood. Depression is an illness,and just like MS, it deserves the time,attention, and treatment that any other illness would be given.

So we have to ask ourselves are we suffering in silence from depression? If you are it is time to break that silence and know that you are loved and cared for and that you no longer have to suffer alone. It is very understandable that someone would fall into depression after being given a diagnoses of Multiple Sclerosis. So please don't feel ashamed or alone when you have these feelings and if they last for more than a few hours or a couple days please talk to someone about it. The amount of people suffering with depression and feeling completely alone is too high. We as a people need to find our humanity and compassion again. If you see someone who you even think might be suffering, remember that something as simple as a hello or a hand reached out in care can help change a life. Never ever forget to tell everyone around you how much they are cared for and loved b/c sometimes it's easy to forget that. It is especially easy to forget when you become lost in your own thoughts after being given a diagnoses of any disease not just MS.

Develop a spiritual interest. Defining spirituality is a very personal decision. Spending time in nature, prayer, meditation,or a religious setting, are all forms of spiritual practice. How you define spirituality does not really matter; the important thing is that you feel connected with something greater than yourself. When
firmly grounded in a spiritual belief, one can come back to this centered place – especially during times of stress or sadness and find great comfort.

If you have found yourself reading this and you do not suffer from MS or any other disease but know someone who does and they just don't seem themselves anymore, please reach out to them. We are people to and like you, it means a lot to know that there is someone out there who does care. We have feelings also and all we want is to be loved, accepted and welcomed into your lives. Don't forget us because we haven't forgotten you.

So many Hugs, thoughts and prayers to and for all my brothers and sisters out there who are battling these diseases and any other disease.

Sunday, May 8, 2011

A Mother's Love Is The Strongest Bond In The World

Happy Mothers Day To All You Mother's With Multiple Sclerosis

To all you mothers out there who battle with Multiple Sclerosis and other Autoimmune diseases I would like to take this time to wish you the most blessed Mother's Day Ever.

Happy Mother's Day!!!

I to, am a mother who battles Multiple Sclerosis and if you are like me we push all our pains and worries back to make sure our children are taken care of. I know that battling MS is a tough road but I am so happy that my little guy can make me laugh and keep my mind off the pain and instead on him and all the joys he brings me. Being a mother is the greatest gift I have ever been given. Mommy Loves You Michael!!!

Too all the mothers out there who put all there aches, pains and worries away and become the selfless person who always puts your children first, I wish you the most blessed Mothers Day ever.

I know this fight is hard but always remember as long as you show your children the small acts of kindness, unlimited acts of love and never let a day go by without telling them you love them and give them a great big hug you have done the greatest thing a mother can do for her children. A Mothers Love is the greatest gift a mother can give children that will never be forgotten. Hugs and Blessing to all of you!!

Friday, April 22, 2011

Neuropathic Pain Problems

How many of us out there deal with the burdens from Neuropathic Pains? I Myself deals with these pains and find it hard to get a doctor to listen or even believe this is happening. I wanted to share some things I have found out about this problem. The causes, symptoms and some treatments. Unfortunately I currently receive no treatment for my pain and am forced to deal with it with a smile every day of my life.

So what is Neuropathic Pain?

Neuropathic pain is a complex, chronic pain state that usually is accompanied by tissue injury. With neuropathic pain, the nerve fibers themselves may be damaged, dysfunctional or injured. These damaged nerve fibers send incorrect signals to other pain centers. The impact of nerve fiber injury includes a change in nerve function both at the site of injury and areas around the injury.

One example of neuropathic pain is called phantom limb syndrome. This occurs when an arm or a leg has been removed because of illness or injury, but the brain still gets pain messages from the nerves that originally carried impulses from the missing limb. These nerves now misfire and cause pain. Simply put Neuropathic Pain is the result of a damaged nerve.

What causes neuropathic pain?

Neuropathic pain often seems to have no obvious cause; but, some common causes of neuropathic pain include:

Back, leg, and hip problems
Facial nerve problems
HIV infection or AIDS
Multiple sclerosis
Spine surgery

What are the symptoms of neuropathic pain?

Symptoms may include:

Shooting and burning pain
Tingling and numbness

Here are some ways Neuropathic Pain is treated.

Some neuropathic pain studies suggest the use of non-steroidal anti-inflammatory drugs, such as Aleve or Motrin, may ease pain. Some people may require a stronger painkiller, such as those containing morphine. Anticonvulsant and antidepressant drugs seem to work in some cases.

If another condition, such as diabetes, is involved, better management of that disorder may alleviate the pain.

In cases that are difficult to treat, a pain specialist may use invasive or implantable device therapies to effectively manage the pain. Electrical stimulation of the nerves involved in neuropathic pain generation may significantly control the pain symptoms.

Unfortunately, neuropathic pain often responds poorly to standard pain treatments and occasionally may get worse instead of better over time. For some people, it can lead to serious disability.

So how many of you fall under this category? Are you suffering from Neuropathic Pain as a result of your Multiple Sclerosis or another Disability listed above? If you are dealing with this does your doctors believe you and are they treating you. If so how are they treating you? Like I said in the beginning I suffer from this and my doctors do not believe me and or have decided not to treat me for it. So in my life God, friends and family are what get me through this. Do you have any advice to give me on speaking with my doctor about this? All comments and advice are wanted and welcome. Have a great Good Friday and God Bless All!!!