Honesty #4

MDA 1 Comment »

The big challenge of the day is: Do I take something for pain and fatigue or not?? I hate taking medication! I don’t care what anyone says, it is all bad for you in one way or another. It may help one thing but it will cause another problem and then you need more medicine for that. I think taking something ounce in a while is usually ok but everyday or multiple times a day can be a problem. Pain medicine like Advil or Tylenol is not good to take all the time which is what I would need. I don’t want to be on narcotic’s for the simple fact of I have a family to raise. I’m afraid I will keep needing something stronger and stronger and will end up on a morphine pump or something. Or I will be a zombie and not be able to function anyways so why bother. So I take a prescription non narcotic a few times a week. It helps so much but if I take it every day I end up needing more and more. Also when I took it before regularly and decided to stop for awhile because I was having some issues with feeling nauseas all the time, which can be a side effect. Turns out I was addicted to the stuff. Even though it is not a narcotic it is highly addictive which my Dr. failed to inform me of. I have never been addicted to anything other than chocolate (lol) and it made me feel horrible. I tried to stop a few times but would get so sick with diarrhea, vomiting, chills and hot flashes and pain all over like I had a fever or something. The first time I just thought I had the flu. When it happened again and I felt better when I took it I googled the medicine. I knew when I saw all the warning’s that it is highly addictive and what the sign’s were that that was what I was experiencing. I was only able to come off of it while in the hospital after a hip surgery and on morphine. Problem is I have tried several other things and it seems to be the only thing I’m not allergic or have severe side effects to that works for me. I talked to my Dr. about this and she said to try to just take it every other day or so. Not on a regular basis like I did before and I should be ok. So that’s what I do. Every day I wake up and try to decide is today the day I feel like I have a lot to catch up on around the house or errands to run. Truth be told I feel that way every day. So I just have to suck it up and do what I can without it some days. So far so good I do not get sick when I don’t take it so that is a good sign. I know God made me this way for a reason and try not to question him but some days it’s just a battle. Why me? Why my children? Then I see or hear about other’s who are so inspirational to me and it puts me back in check. That is one reason I choose to share things with the world. I can only hope and pray it helps someone else get through the day. Maybe just maybe it will be the push someone needs to donate the last dollar needed to find a treatment or cure. Please keep this challenge of mine in your prayers. I truly believe that is what gets me through. Love and hugs to you all, Nicole

Honesty #3

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Today is a very rough day. I felt good this morning for a change. But this afternoon I am dragging. It is a battle to even just move a couple steps or even move my arms. It sucks because in my heart and soul I have so much energy but my body just can’t keep up. I think it’s partly from being outside this morning for an appointment and couple other stops. I get cold and then it ruins the whole day. I feel like I have so much to do and just keep going best I can. What I really need to do is curl up with warm hubby and take a nap. He truly is who I was meant to be with because he is like a human furnace even when he says he’s cold. People are always telling me I should rest more and although I may need to I don’t see how this will really help me. The more I rest the less that gets done and the more behind I get and the more anxious I feel. So if I don’t rest and stay on top of most things then it’s not so bad other than I feel like I got hit by a semi truck. And yes I do know what that feels like because I was rear-ended by one. Every muscle aches, even muscles you didn’t know you had will ache. I still need to do dinner and clean up around the house then get everyone ready for chess club at the Neighborhood center. I am excited about this and hope it will help me feel better. Doing things for others always makes me forget about myself for awhile.

Honesty #2

CMT, MDA No Comments »

A shower and all the other necessary things women do to look good on a daily basis make me wish I were a man. Not in the way that most women jokingly say it either. My arms hurt! To lift them for more than 30 seconds above my head burns. So ladies imagine all the 30 seconds your arms are above your head during your morning prep time. Pay attention next time you’re getting ready for the day. Shampoo, rinse, conditioner, rinse, hairdryer, brushing, straightening, curling, pinning up, make-up, and I’m sure you all can get it, MY ARMS HURT after the first step :( but I keep going. So don’t let my beauty lol fool you it comes at a price :( that I choose! Again please know pity. I just want awareness that such is the life of a CMTer! Please if you’re able to lift your arms better than I think about helping by donating $30 to MDA/Team Peachy or donate 30 minutes of your time to help in other way even if it’s learning about MDA or CMTA and all they do. Thank you and I pray you all have a Peachy Day :)

Honesty #1

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This morning I had an overwhelming feeling that God wants me to be brutally honest with myself and with others. To let people know how it feels to be me and be honest with myself about how I feel. I usually ignore or hide what is going on with my CMT symptoms physically and mentally. But what is that telling my kids, who are also affected by CMT. I don’t want them to hide things or feel different or weaker than me. But at the same time I don’t want them or anyone else to think I am weak. So everyday I am going to post something knew about me that I may not normally share. I don’t want your pity and I’m not asking for anyone to “do” for me. What I want is support and motivating people to surround me with encouraging words. I want better understanding of what Team Peachy is all about. WE NEED A CURE! They are so close between MDA and CMTA and they need your support and awareness. Please help me and my children with this. I will attach a link to my website that shows all you can do to help and other information. Thank You and God Bless


MDA No Comments »

When people first find out what my children and I have they always want to know what can we or they can do to help it from progressing.  All we can do is protect and conserve what we do have.  It is possible to build muscle, the younger the better because when it starts to deteriorate they say it can not be built back.  So the more muscle the better.  Also remember that although it is good to participate in therapeutic activities such as swimming, horseback ridding and physical/occupational therapy that we have to be so careful to not over due it.  If you exert yourself to much it can cause faster muscle deterioration. From what I have read and experienced there is a fine line and if you cross over it it can take days to get back to your normal. It is also good to stretch, practice balance, and moving toes and feet to keep mobility and balance as long as and as much as possible.  Again the younger the better with this which is why the physical/occupational therapy, therapeutic activities and at home exercises are so important as well as early diagnosis.  Please remember this is just my opinion based on what I have researched and experienced or have been told by my Doctor