It’s Time for a CHANGE

I am usually a very private person, but then I thought… as supportive as my family and friends are, do they truly understand what I am going through?  Maybe there are others out there that are experiencing the same thing I am and they need to hear they are not alone.  They need to hear if something worked or did not work for me to maybe help them if they are going through hard times…. So, I decided what better way to get the weight off my shoulders by expressing myself to “vent” while possibly allowing others to vent as well and learn from my life’s ups and downs in living with MTHFR? 

They say change is good.  You’d think I’d be used to change and “going with the flow” by now but I am having a hard time adapting to all the changes that I need to make. I have to keep a positive outlook, however, and I think that over time, things will turn out just fine.

Here are my most recent changes (diagnosis):

After finally finding a neurologist that tested me based off my symptoms: numbness and tingling in my feet and hands, varying degrees of muscle weakness, multiple-system atrophy, painful sensation of tickling, tingling, burning, pricking, or numbness and problems with autonomic nervous system….. I was diagnosed with peripheral polyneuropathy with axonal loss. She sent me for Nerve conduction velocity (NCV) and electromyographic (EMG) testing.  The good thing is that it is not Multiple Sclerosis!  The bad news is that it does come with its own set of problems.

The definition of peripheral neuropathy can range from a condition in which there is damage to nerve fibers within the peripheral nervous system to the more traditional distal symmetric polyneuropathy which multiple and usually bilateral large fiber peripheral nerves are involved.

What I found in my research and talking with the doctors is Polyneuropathy is a serious, unpredictable, occasionally progressive, and life threatening neurological disorder that occurs when many nerves throughout the body malfunction simultaneously. It may be acute and appear without warning, or chronic and develop gradually over a longer period of time. Many polyneuropathies have both motor and sensory involvement; some also involve dysfunction of the autonomic nervous system. These disorders are often symmetric and frequently affect the feet and hands, causing weakness, loss of sensation, pins-and-needle sensations or burning pain.

Such patients usually present with varying combinations of altered sensation, pain, and muscle weakness in the extremities. If loss of proprioception in the lower extremities occurs, patients will have difficulty with balance and walking (sensory ataxia). Symptoms are usually relatively symmetric and most predominant in the lower extremities. If cranial nerves are involved, patients may present with symptoms of cranial neuropathy, especially facial weakness which helps explain my multiple tias that I experience.

My changes now include aquatic therapy three times a week and a change in my attitude each and every day.

I was also recently diagnosed as border-line diabetic.  This is good news to me considering that it was caught prior to becoming an actual type 2 diabetic.  The change here is fairly easy because I know what I can and cannot eat and make changes to my diet and nutrition.  As frustrating as it can be to read all the labels and menu items, I think it will be a fun challenge and a great way to try out new recipes.

I’m hopeful that all this change will result in something wonderful and I know that I just need to stop worrying about the “what-ifs” and focus on the positives. Are you good with change or are you like me and sometimes worry about the changes in your future?

 

Penni M.

I just want to me again? Is there a “new” me?

I am usually a very private person, but then I thought… as supportive as my family and friends are, do they truly understand what I am going through?  Maybe there are others out there that are experiencing the same thing I am and they need to hear they are not alone.  They need to hear if something worked or did not work for me to maybe help them if they are going through hard times…. So, I decided what better way to get the weight off my shoulders by expressing myself to “vent” while possibly allowing others to vent as well and learn from my life’s ups and downs in living with MTHFR? 

I want to be me again!!!!!!!!!!!!! 

I want to be happy!  I mean TRULY happy again and banish these feelings of helplessness and worthlessness which causes me to be angry and feel frustration towards most everything that I am encountering lately.  I feel like some days I am on the edge of a cliff just waiting for the next “thing” or “person” to push me over….

HAVE YOU EVER FELT THIS WAY?

I used to be able to do anything I wanted and pretty much had a full schedule.  I have always had a positive attitude in my life and could pretty much handle whatever anyone through at me.  It made me learn from my mistakes and it made me grow stronger in anything I ever did to handle the next situation that life may have thrown at me.

What causes me to feel more frustration lately is that in my mind, I can still do what I did before and “think” that I can handle the next stressor that is up coming.  However, my body and my emotions are not on the same track as what I think in my mind.

I do have good days and bad days, but can I just tell you… They are nothing like the old days when you always saw a smile on my face and I was the one everyone depended on to keep the family in motion. I did it with pride and felt like I was a good mother, companion, and friend and wore my many hats (never ever complaining).

See, I love my family so very much and I have always been there for them.  I feel now that I am unable to be the “mother” I really need to be and I feel as if I am disappointing my children and grandchildren.

This to me is the greatest disappointment and frustration that I am encountering emotionally.  They deserve the best of “me”.  But what “me” has to offer some days is really not much.  It is all I can do to give me… “me”.

I am very luck that I do have a supportive family, but it just weighs so much on my mind, that I have not been able to overcome this.  Since you may not be aware, I have finally started going to counseling to have someone to talk to.  I used to be embarrassed by this, but now I think it was a good thing and may be what keeps me going on my bad days.

They recently diagnosed me with “severe depression” My immediate reaction was, well, no wonder!  What can I positively find in my life any more?????…. I wake up not knowing if I am going to be okay, am I going to be able to walk on my feet that hurt so bad every morning or even sit up straight because I have tremendous amounts of pain in my lower back and belly, or I am going to start my day off thinking I am okay and then end up in the hospital again from an unexpected a mini stroke?  Am I going to be able to breath enough to go up and down my steps to do the laundry or even get to my bathroom? Am I going to make it to my daughter’s basketball game, cook my family supper, or even attempt to go to the grocery store?…. And the list goes on…. I am thinking would you not be depressed?

Then, in my mind, I smack myself across the face and think, “you idiot”.  You are still here for your family (your children and grandchildren).  You are still here to breathe the fresh air and gather up the sunshine or sit in the cold snow and watch them make snow angels in the amazement of the numerous amounts of beautiful snowflakes. You are still here to watch the sunrise and sunsets (things I am sure I took advantage of before) and you still can try to make the MOST out of each and every day.

I say to my inner self,  “No, you can’t and will not be able to do the things you used to be able to do, but hey, let’s try finding some new hobbies that you can do!  Let’s try doing little things at a time each day starting with one thing and feel some sense of accomplishment for doing the dishes or dusting the table.  Let’s take on a new perspective to get that positive attitude back for what I can do!”  No, I am not crazy for talking to myself…. At least I don’t think so at this point… But I am trying to keep a positive attitude and rearrange my lifestyle according to my day.

I think this is the only way I am going to survive this journey with MTHFR. 

I have realized that the moment I see I am headed into frustration, agony, sorrow and low self-esteem – it is important that I learn to shift my thoughts! Sometimes it might just help me to think about something completely unrelated, but it helps me more when I find the positive in everything that is trying to bring me down.

 Here are a few examples that I am trying to re-train my brain:

My hair is falling out –  it’s okay, I now have a new summer haircut AND if I have to, I will wear my wig, then I will never experience another bad hair day, right?

I can’t eat my favorite foods anymore –  that’s okay, now I can experience a new taste pallet and find another favorite food that I can eat without having a bad reaction. It’s a great way to try out new recipes.

Oh wait, you can’t cook today because you can stand up or are too weak – that’s okay, maybe I could not prepare a gourmet meal and cook (which was one of my favorite things to do) BUT… you can put something in the microwave and your family still has food on the table!

I can’t plan on much this week because I have 3-5 doctors’ appointments – well, this gives me time to take a new scenic route, spend time with my mom who drives me sometimes, and hey, I don’t ever have time to read… so sitting waiting at the offices gives me time to pick up a good book, right?

I can’t remember this morning, yesterday or last week –  that’s okay,  I make myself notes and have been creative in writing daily journals. (something I would have never taken the time to do before). I can watch a movie I previously watched before and not know how it is going to end! I can read something I read before and it is interesting to me again.  Plus, some things I do or read jog my memory and I can begin to remember bits and pieces.  I will be okay with that!

I can’t do… (whatever it was I want to do) because I am too weak or sick –  that’s okay because there has to be at least ONE thing I can accomplish today even if it is something minor.  I am not going to just stay in bed and let the day pass by me! Maybe I can relax and soak in the tub (find some “me” time while relaxing my sore, weak muscles) Yeap, that is something positive!

You get my point, trying to find the positive things in life (NO MATTER WHO YOU ARE) will always outweigh focusing on the negatives!  The power of remaining positive, whatever the situation, can never be underestimated. It may take a lot to find it…. But it is there!

Here are some examples of what I want to accomplish:

*No matter how unfortunate my current situation may appear, I realize it is important to recognize the beautiful lessons waiting to be discovered.

* I start thinking about the blessings and miracles I have in my life. I find that once I start looking for them, I realize just how lucky I am with all the abundance of blessings in my life.

*I keep an inventory of memories that I can go to that will immediately make me smile and find that positive attitude and my blessing if I cannot get out of that funk on my own.  I actually am realizing that my new hobby is actually photography.  I love going back to my computer and looking at the pictures I took of my family or videos that help me remember and relive the happy times I experience with my family and friends.

My new philosophy is living life to its fullest!

I am working on this constantly!

If you feel or have felt this way too, “I am right here with you, working towards better understanding of my emotions and becoming a better person. I hope that something I have done or said will help you in your journey as well.”

Penni M.

Why I Started This Blog

I started this blog to write about my struggles with anger and frustrations, depression and anxiety, self-esteem and self-worth, inner feelings and emotions about life …(the list goes on…..)

I thought it would be a good idea to help educate others and raise awareness along the way. I want to share what I have learned and what I continue to learn through counseling, self-analysis, talking with other doctors/nurses, hours of research, and other people’s personal experiences with this diagnosis.  My hope is that I will not only be helping myself heal, but helping others in the process. This is a blog about starting a healthy lifestyle to keep MTHFR from running my life!

My advice:

It is always OKAY to cry. It’s absolutely okay to NOT be okay. It’s perfectly okay to NOT be perfect.

I was first diagnosed with MTHFR in 2010. 

At the time, I thought, okay, whatever that means???

But then all my symptoms, illnesses and conditions started to make more sense to me after my research. I have been keeping my illness away from my friends and even some of my family for a long time but when things started progressing, I felt it was time to talk to them and my doctors and eventually publicize a “journal” for a lack of better words, to help everyone understand MTHFR and its effects on yourself and your family.

After about five years, I realized that I am not alone in all of this; there are many others that suffer the same things!  I was not alone and I was not crazy. I was “NORMAL.” We all have our issues and it’s nothing to be embarrassed about or ashamed of.  It’s life. Well…over the years I have reflected even more on that and have come the conclusion, it is going to have be my responsibility to continue my research and change my lifestyle to help make my life appear as normal as possible!!

I am not a doctor, nurse or nutritionist, but I have been directed from others to research this and want to share with everyone what I have learned.  Please use it as a tool to help you further your own research as everyone with MTHFR has unique disorders and symptoms that may not be exactly like what I have experiencing.

THE MAIN UNDERLYING DIAGNOSIS THAT DOCTOR’S FEEL IS CAUSING ALL OTHER SECONDARY CONDITIONS:

Methylenetetrahydrofolate reductase (MTHFR) About 95% of the doctors that I have met are not familiar with this condition. MTHFR is an enzyme that in humans is encoded by the MTHFR gene. I have copies of C677T x’s 2 mutations.  Although there are actually about 50% of the population with one of the 50 gene mutations this causes, I was told from a Dr. from John’s Hopkins that this form is caused by mutations results in 0-20% residual enzyme activity, Severe MTHFR deficiency is rare (about 50-100 cases worldwide) It has been explained to me that symptoms of MTHFR deficiency vary from no symptoms to severe neurologic and blood vessel disease. So far with all the testing and medications the local doctors have tried to control this issue , I am still multiple complications from this disorder and no one yet has found a proper treatment plan!

This is what made me start researching this genetic condition and be my own patient advocate.  I have researched and talked with doctors/nurses throughout USA to help me inform my own doctors and specialist in my area so I would begin receiving proper treatment. So far most all have just simply masked the symptoms with medications and have not been properly educated on this condition to run proper testing.

After experiencing this frustration, I wondered how many other people are receiving the wrong type of treatment and being prescribed medications that their body is unable to absorb and not finding the right doctors in our area to treat this.

A note for everyone to share with their family who needs to support them:

Most of us who suffer MRHFR look fine on the outside but suffer on the inside. Our family and friends need to know:  It is just like any other disease.  You wouldn’t tell a diabetic that it was their fault they had diabetes or that they could wish or pray it away, would you?  No…you would encourage them to take care of themselves and get the help and resources they needed in order to live their lives to the fullest, right?”

After living with this, I have learned and would like others to learn the same.

We can’t change who we are.  But we can learn to take care of ourselves and cope with the symptoms of the disease. Even if it takes every last bit of energy, courage, or brain power you have left…DO SOMETHING!

I have also learned that sometime you feel your family may not understand or be supportive.  Here are some of the things that were told to me that are helping me cope, maybe they will help you as well.

Tell someone close to you.  ANYONE WHO WILL LISTEN!
Don’t worry about what they will think. It is good just to find someone that will listen to you vent.  Keeping something like this to you may make it harder on yourself and it builds up more frustration and may lead to unnecessarily self-destruction. It is not going to just go away!

Talk to someone who can help.  Find a professional that is an impassive third party is paid to listen to you. They do not have a personal bond or emotional attachment.  Sometimes they may have great suggestions and other times, they may not understand themselves, but they should have enough experience to point you in the right directions to access resources you may not already have.

Avoid medication pushers.   I have researched with the help of other doctors the medications people with MRHFR should avoid. (will add a post with this information)  It is important that you talk to someone that is willing to help you without masking the problems or creating more.  Try to avoid doctors that are quick to access their prescription pads for a quick fix of your most current medical issues.

Always seek professional medical advice.   There is nothing wrong with leaving a doctor that you feel is not properly caring for you.  Find one that will! Find a doctor that will discuss all your issues openly and is willing to learn more information that is specific to you!