No Time To Process

So to continue from that dreadful day my poor GI doctor told me the “C” word. I waited in the doctor’s office for my husband who left work to be with me. (God bless that man’s soul.) I remember going into the restroom to splash my face with cold water. passing by the receptionist on the way. She knew , I could tell by the look on her face. She didn’t know what to say. Everyone seems to be at a lost for words at this point. I just needed to feel that cold water on my face, to feel anything at this point. I was completely numb, in some sort of trance. Staring at my reflection and just thinking WTF!

By the time my husband met up with me, I had decided to go home. I couldn’t stand all the looks I was getting. I already felt I was given a death sentence , I didn’t need the looks to confirm it. My love gave me the tightest of hugs. Looked into my eyes and told me everything will be alright. As long as we were together we can get through anything, even Cancer. At that particular moment it was exactly what I needed. I took comfort in his arms, felt his strength flow through me as I quietly cried to myself over fear of the unkown.  Fibromyalgia has already taken the life I was so accustomed to , now Cancer wanted to rob me of what I had left. Little did Cancer know, is I’m a fighter! You picked the wrong person to fuck with!

I met with my PCP the following day. She already was informed of pathology results. She told my husband and I these words I will never forget. “There Is No Time To Process”. We had to act now. Start treatments as soon as possible. She set up my appointments with a thoracic surgeon at Memorial Sloan Kettering Cancer Center. All was taken care of by her office. The same people who had just the day before didn’t know what to say.  One less thing for me to worry over, thanks to them. Even when faced with great adversities I have found to come across the most wonderful of souls. For that I will be forever grateful . And so my new journey began.

a-new-journey

A Little Over A Year Ago…

On April 15th, 2015 is a day I will never forget. On this beautiful spring day, I went in for a follow up with my gastroenterologist for issues with my IBS. I could tell something was wrong , he didn’t know how to tell me. I remember feeling so bad for this man, my doctor, this kind hearted soul, seeing him struggle to find the words. I had to just ask him to tell me already, and he did… “You have CANCER” My brain felt like it was going to explode. How could this have happened? I had no symptoms that would had sent up flags. Apparently what he originally had thought to have appeared to be an ulcer on my esophagus was in actuality a tumor. My life flashed before my eyes. So many thoughts came into play and all I could say to myself was, I don’t want to die! I broke down and cried. I sobbed so hard I couldn’t catch my breath let alone breathe. I was asked if there was anyone they could call, my husband was the first person who came to mind, my rock, my support system when it came to fibromyalgia would now have yet another burden added to his plate.Life will never be the same.Again…

.cancer

It’s So Much More Than a Feeling of Sadness

                       Depression, it’s so much more than a feeling of sadness. It’s a feeling of hopelessness, defeat, and fear all rolled into one ugly being, a monster. I normally pride in myself as being and optimistic person but there are some days it takes over, so exhausted fighting it ,too much work and I give in. Life shouldn’t have to be so hard, and then I start thinking…is my faith being put to the test? Am I seeing the world through false rose-colored glasses? Does anyone care?

I’m tired of mourning the person I use to be. I tell my brain snap out of it , you been through this before , you’ve come out stronger on the other end but my heart just doesn’t want to listen. I just fall deeper and deeper into that infinite black rabbit hole not knowing when and how I will come out. I should already know how this cycle goes, this has happened many times before and I’ve come out roaring like the lioness I am, ready to conquer any obstacle in my way. I’m a fighter, a warrior,

Fibrowarrior.

So my fellow fibrowarriors, always remember you are not alone, it’s ok to go into that lonely rabbit hole as long as you don’t stay there too long. When you are ready to come out you will and if you can’t do it on your own know there is always someone to lend out a hand.

Much Controversy With Renaming of SEID

SEID , Systemic Exertion Intolerance Disease formerly known as Chronic Fatigue Syndrome or CFS has been the big buzz as of late. With equal amount of people for and against the change. In my belief it was a good change, actually naming it as a disease and not a syndrome. It’s difficult enough having to deal on a daily basis when there are those who still have the mentality “this is all in your head”.

According to the IOM report Systemic Exertion Intolerance Disease will be defined in both adults and children with the following :

1) a substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest;

2) postexertional malaise (often described by patients as a “crash” or “collapse” after even minor physical or mental exertion);

3) unrefreshing sleep; and

4) cognitive impairment and/or orthostatic intolerance.

Maybe now they will see this is not a figment of my imagination, that the tiredness and fatigue I feel after completing even what some may think is a simple task is in fact REAL. Real enough to impact my daily activities, making me incapable to work in a profession I had grown to love.
Physicians will now have no choice but to listen, and diagnose or else be faced with malpractice and incompetence. After all we are our own advocates.
Until then I must listen to my body and pace myself , do what I can and accept without regret the things I no longer am able to do.
Still learning…still accepting…slowly
Be well my fellow fibro fighters, stay strong!

“There comes a time when you have to stand up and shout:
This is me damn it! I look the way I look, think the way I think, feel the way I feel, love the way I love! I am a whole complex package. Take me… or leave me. Accept me – or walk away! Do not try to make me feel like less of a person, just because I don’t fit your idea of who I should be and don’t try to change me to fit your mold. If I need to change, I alone will make that decision.
When you are strong enough to love yourself 100%, good and bad – you will be amazed at the opportunities that life presents you.”~ Stacey Charter

It’s Alive…

So yesterday was my day to be the human electrical pin cushion. In other words it was my day to have a test known as EMG (Electromyography). My muscles response to a nerve stimulation was measured ,due to the chronic lower back pain I have been experiencing. MRI showed herniation and impingement of L-3 L-4 & L-5 and this was the next diagnostic step to make.

The technician started the procedure with the nerve conduction test, this measures the flow of current through a nerve before it reaches the muscle. That was the electrifying part no pun intended. There were moments it was very uncomfortable but I believe it was due to  technician having trouble locating the nerve. (the nerve of my nerves) When this part of the test was completed the Neurologist came in to perform the EMG. For this part I had to lay on my stomach for the human pin cushion segment of my day. I know it might sound weird but it is the only way I can seem to describe it.  It felt like multiple needle pricks on different locations , calves, side of thighs and back. Most likely to the origin of my pain complaints. So it’s safe to assume everyone will be different.

Just like that it was over, all the anxiety and worry I had from the night before was gone.  No special instructions given other than being able to return to normal activities without restrictions. Now the wait for the test results. Crossing fingers and anything else I can. 

Continue reading

Importance of Pacing Myself

“Paying today for living yesterday”

How many times has this happen to me? Too many times to count. Pacing myself is still a learning process for me. I tend to over do it especially on the days I feel better than others. And that is exactly what happened to me yesterday. I woke up fairly well rested and pain level was at a minimal. I was excited for meeting up with a fellow fibro sister for lunch and I continued my day with visiting my mom only to end the day meeting up with my hubby at his job for a late dinner date. By the time I got home I started to feel the pain levels soar. I thought I would be able to have a good night sleep for an early appointment with my doctor but to my disappointment sleep had eluded me once again. Still learning what works for me. It’s ok if you stumble in your journey as long as you never give up and continue finding your way of living. Everyone is different and what might work for one person may not work for another. The tip is to find your own way.

How Do I Pace Myself?

A lot of pacing strategies can help you live better with your condition. They include:

  • Knowing your body
  • Short activity periods
  • Scheduled rest
  • Routines
  • Prioritizing
  • Switching tasks

Don’t feel like you need to use them all — experiment and see what works for you.

Pacing: It’s An On-Going Process!

Pacing takes some effort and self-discipline on your part. Once you see the difference it can make, however, you’ll find that it’s easier to pace yourself than to deal with the consequences of NOT doing it.

Happy Ground Hog Day! Not!!!!!

groundhog-day-comment-008

First for all the Patriots fans, much congratulations are in order, it was definitely an exciting game. Now comes Phil the Groundhog…Pfft. so he predicts six more weeks of winter and my bones are not happy to say the least. Hope everyone’s weekend was pleasant, mine on the other hand was spent with excruciating back pain. You see I have  herniation and impingement on the L-3, L-4, & L-5 of vertebrae. I usually do gentle yoga to decompress the spine but nothing was working so I pulled out the big guns….My TENS Unit. It eased the pain enough to be able to sleep a little bit longer which is always a plus for me and for many of us with Fibromyalgia.  So if anyone is interested please speak to your physician regarding acquiring one and I will also attach a link of placement of electrodes if anyone has a TENS Unit handy.  

{{{GentleHugs}}}

http://www.tensunitstoreonline.com/placement-guide-for-tens-electrodes/