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Tag Archives: Neuropathy

Your Story: What’s changed your life (milestones, health, spiritual, family)?

Dear Friends,

Once again thank you for stopping by! Today I’m writing to all of you to ask for ‘your stories’. I am so blessed to have this opportunity through the Chat with Dee Dee blog to get to know so many new people and slowly develop acquaintanceship(s) along the way.

When I started my blog in 2010 my first vision was to share my cancer survivor story and things I’ve learned along the way. What I never anticipated was how God would use this blog as a format for others to share their stories and to give me so many opportunities to learn and grow. 

I have had some of the most amazing guest blog posts and as a result I’ve been so fortunate to share a variety of topics with my blog, Facebook and Twitter readers:

As many of you know from corresponding with me or from reading my disclaimer, I’m in the process of writing a book. I’m using ‘my stories’, ‘your stories’ and sharing other helpful information and tools I learn about along the way that impact ‘our lives’.

So now I’m writing to you once again to ask for your inspirational stories. If you’re like many of the people who have written or spoken with me, you’re probably thinking to yourself but I don’t have anything to share. Well your wrong, we all have a story our life experiences though familiar to us are new, inspirational and so very helpful to others.

Write now some of you are experiencing or have experienced a life changing event whether medical, financial, relationship or spiritual it’s your story and it’s so valuable. I get so excited when I am blessed to hear from others and learn about your journey and how you’ve conquered and learned to overcome or live joyfully despite the circumstances life brings our way.

Romans 8:7  No, in all these things we are more than conquerors through him who loved us.

I would be honored to hear from you. It is my desire through my blog and outreach ministry to share my survival story to help others and a great part of my ministry and possibly the most rewarding is meeting others and hearing their story and learning tips and advice from others. I know we can collectively learn and benefit from each other.

Please send me an e-mail and share your story and/or comments or question email: Dee Dee (Click Here).

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Give thanks when you’re waiting – Timing is everything!

I enjoy life the time with family, friends and my time with the Lord. He is my rock and strength I’m so grateful. I’m happy to celebrate with loved ones my family, friends and new acquaintances. God has also given me the compassion to come alongside others when life is difficult.  

When I got neuropathy I didn’t know anyone could understand what it was like to be given a medication and wake up the next day in my case paralyzed in one leg and then left to deal with all of the ongoing symptoms. When I started sharing my story about neuropathy God began to show me I was not alone there were many people who could relate. I began meeting other people who just like me who have also encountered neuropathy due to an adverse drug reaction. I’ve connected with another woman on Facebook who’s also made it her mission to share her story and educate others about alternate ways to treat neuropathy symptoms. I found a site CureTogether that aggregates data by disease, treatments and efficacy. I shared with the Co-Founder my treatments and how it’s greatly improved my circumstances they immediately added The ReBuilder Treatment System  to their website which I hope will help others find relief too. When my dear friend wrote a guest post about how she encountered and dealt with change when her husband went to be with the Lord others knew they too would be okay. In another guest blog post my friend shared the importance of leaving a legacy sharing her family’s story about the love her parents had for each other and for their family others were reminded how important traditions are in life. When my new acquaintance shared about how he discovered he had prostate cancer at a routine check-up and how he navigated through surgery and treatment others we’re encouraged to get tested.

So when you think you’re the only one facing the problem God will send someone your way but His timing is everything.

I worked for many years as a hair stylist in a predominately Jewish community and during that time learned many great Yiddish expressions like “A man plans but God laughs”. 

What it means is God has a plan in our life he doesn’t leave us all alone to figure it. But know that our choices affect our own lives and those around us. We live in an instant gratification generation and it’s difficult to wait or sometimes it’s difficult to respond when God says it’s time. 

In his heart a man plans his course, but the LORD determines his steps. Proverbs 16:9

We may complain during the waiting periods but know this…. God is always right on time!!! No matter what you’re facing He will provide you strength, power, energy and enable you if he brought you to it he’ll bring you through it. Find things during the drought to be grateful for like you woke up today and it’s a new day, your able to walk, talk and breath. Don’t take these privileges for granted.

Waiting commands your attention to trust and stay strong when the pressures of other people or your own negative self talk weighs heavy on you. Oh but a wise person will move in boldness with confidence, strength and assurance when God calls him to act and respond. You’ll never be called to act alone God will keep His promise.

 But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint. Isaiah 40:31

I never knew that I would be able to blog about my journey and experiences with cancer and the other post-radiation complications I’ve encountered but I know now that I would not be who I am today. I pray today that before we step out we pray and wait on the Lord’s timing.

With love and God’s Blessings,

Dee Dee

Email Me: littledeet@yahoo.com

E-mail the techie behind the Chat With Dee Dee (Blog, Facebook & Twitter pages) who happens to be my daughter.

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When Life Gets Messy: How I Handled an Adverse Drug Reaction (Side Effect Neuropathy)

Note: I am NOT a paid representative for the product mentioned in my post, but I am sharing my experience as an advocate to hopefully help others in a similar position.

When I was thinking about this new blog, I thought to myself the title should be “WHEN LIFE GETS MESSY”.

I was out one evening for dinner with my youngest daughter and her close friend and her mother. We were all having a nice meal and enjoying one another’s company. But I felt funny and knew something was wrong so I excused myself and went to the ladies room. I found that I was bleeding excessively and knew immediately it was a urinary tract infection (UTI). You see I am no stranger to UTI’s since this is another side effect I encountered from post-radiation burn. I went back out and whispered in my daughter’s ear that I needed to go to the hospital that I had a UTI and so politely excused ourselves without alarming our dinner companions.First let me back up a little and explain that ten years after my surgery and radiation treatments I discovered yet another effect of the radiation burn, I was diagnosed with lymphedema in one leg (http://en.wikipedia.org/wiki/Lymphedema). I learned to manage this by being a fighter, a survivor, a woman determined to live life to its fullest. I accomplish this by a daily combination of compression pump therapy, leg wrapping, compression stockings, elevating my legs, and specialized lymphatic massage therapy.

Back to this particular evening which was about five years ago when I got to the hospital they immediately began to treat me for a UTI, wanting to stop the bleeding which was excessive I was given a strong dose of Leviquin through an IV drip. It was odd because my family thought this might be the drug I took orally a year prior and had a negative reaction in the form of seizures but in the moment we couldn’t recall.

The Levaquin stopped the bleeding immediately but the next day, I woke up paralyzed in one leg. We later realized that this was in fact the same drug that I took in a much lower dose orally and now at a stronger higher dose IV it resulted in a more severe adverse reaction causing Neuropathy in my weakest limb, the leg with lymphedema. It was so devastating to wake up and not be able to stand. The pain was so severe and I screamed and cried for a long time until they regulated my meds.

After several months, I had regained some mobility but due to Gabapentin Rx treatment. It took away a lot of the pain, but still causes increased numbness, instability, and poor balance. I was determined over the last few years to search for the right treatment. It’s a funny thing my daughter actually found this treatment early on when I was first diagnosed but when we asked my doctors and case manager they said there are so many treatment systems that are not FDA approved and they advised me against it.

But I am so pleased that my daughter and I were so persistent. Several months ago my daughter noticed that the Cancer Treatment Centers of America (CTCA) uses this same treatment system which I noted on their site under post-colorectal cancer survivors treatment and neuropathy. The system was still too costly at nearly $2000 plus. The suggestions I found through my research were that this treatment should be coupled with therapy which meant co-pays on top of the initial cost. But oh how God is good. We prayed that he would make a way that would enable me to afford to purchase the system. As we continued to research via the web, read books and forums to our surprise the system’s website had a special offer the price was half price through their Canadian vendor for a limited time. I purchased the ReBuilder Treatment System (http://www.rebuildermedical.com). Since I’ve started using it, I’ve regained movement in my toes, which were previously numb and lifeless. I can now feel temperatures again, and I even walk better at times without my cane though I am still careful! The greatest result from this treatment is that it has virtually eliminated all of the painful neuropathy symptoms. I am so grateful to God for this miracle and for finally gaining some relief.

I highly recommend investigating if you have neuropathy to determine whether or not this treatment is right for you. It is also covered up to 80% by Medicare.

I am now pursuing measures to avoid future poly pharmacy adverse drug reactions. I had a negative reaction to in the past but didn’t realize at the time of my medical emergency. What happened at the hospital may have been avoided if we were able to identify this medication as something I had adversely responded to in the past.

Questions To Ask Your Doctor About Neuropathy (link)
Alternate Treatment Options: ReBuilder System (click here medicare and insurance form Original Medicare pays 80%. If you have Medicare and a supplemental plan, you may be eligible for 100% coverage) 
can help eliminate the painful symptoms of peripheral neuropathy (This treatment worked for me). ‘Canadian vendor’, link to www.ReBuilderMedical.ca Note from the vendor: “The 2407 model offer has a 30 day money back guarantee in North America. Purchasing through our site has become a viable option for those who are unable to get insurance or Medicare coverage, or for those who wish to have the 2407 model, which MediCare does not cover. All orders are shipped from the manufacturer in Charles Town, West Virginia.  In an effort to make the unit more available to those who cannot afford it, we have also been able to reduce the price of the 300 model basic package to about $500.” Please write to me to request special coupon code to save 10% off the purchase of a ReBuilder 2407 system from now through May 1, 2012.

Discussing Side Effects with Your Physician
Another thing I’ve learned are many times doctors aren’t familiar or don’t necessarily agree with all of the side effects listed on official drug brand website.

Its important to document any side effects you have to medications/treatments and make your doctor aware. Not disclosing something to your doctor can be harmful.

Healthcare treatment data mining sites like Cure Together http://curetogether.com/ can give you insight on success of treatments categorized by disease and patient response/outcome to treatments.

You might also referr to reliable sites like http://health.nih.gov for helpful literature.

I had a doctor wanted to prescribe a medication that is now in litigation for sever side effects. Glad I decided against it and found another option that worked well for me with no side effects. You can also referr to FDA medication guidelines found on official pharma rx site. (e.g. Levaquin http://www.levaquin.com/sites/default/files/pdf/Levaquin%20Med%20Guide.pdf#zoom=100)

Today I am so grateful I continue to see improvement because I wouldn’t settle for mediocre. I keep my mind set to live life to its fullest every day! I don’t think about or worry about next week. I choose to live today for today! When I get up every day I ask my God to be my strength and when I can’t walk he is my legs. I want to be the VOICE for those who can’t fight. I want them to WIN like I am a WINNER. LIFE IS MESSY at times but we can choose to clean up the mess when it comes our way.

With love and God’s Blessings,

Dee Dee
Email Me: littledeet@yahoo.com
E-mail the techie behind the Chat With Dee Dee (Blog, Facebook & Twitter pages) who happens to be my daughter.

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