As I’ve said many times it would have been so comforting to have someone come beside me and share with me their journey. Just discovered this gem of a resource today CSC’s TOLL-FREE Cancer Support Helpline is open Mon-Fri 9 am- 8 pm ET call 1-888-793-9355. http://www.cancersupportcommunity.org/MainMenu/Cancer-Support/Cancer-Support-Helpline.html
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I’m reposting my May 2011 blog post ‘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”.
- When Life Gets Messy: Adverse Drug Reactions, I Was Treated For A UTI and Woke Up Paralyzed On One Side
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.
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.
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,
Co-authored post Dee Dee and Stephanie
I am not a skeptic-honestly! However, my experience leads me to believe the current system is inefficient.
I live seasonally in two different states which makes it necessary to keep my medical records current. To avoid adverse drug reactions from polypharmacy I need share copies of my records with each of the multi-prescribing physicians across the miles.
I sent two letters in writing with my signature, ID and specific instructions of which records I was requesting to which doctors I wanted copies sent. Letters were signed for since I sent them certified/return receipt. However, we never heard or received the copies I requested for my own personal records.
. How do I request copies of my records?
Typically you should be able to write a letter to your doctor including the following (excerpts from about.com “How to Request Your Medical Records”:
- your name, including your maiden name (if applicable)
- Social Security number/ID number
- date of birth
- address and phone number
- e-mail address
- record(s) being requested
- date(s) of service (months and years under the doctor’s care)
- delivery option (whether you prefer to pick up, fax, e-mail, etc.)
- make a point to request a copy of your records at each doctor’s visit.
- note: there may be a per page copy fee charged (e.g., $0.75 a page). If you have financial limitations and cannot afford to pay for copies of your medical records, make a notation in your request letter that ‘I cannot afford to pay’.
- NOTE: Diagnostic lab test records, for such tests as blood tests, CT scans, x-rays, mammograms or others, should be requested from the doctor who ordered them, or your primary care physician. In most states, the lab will not provide them to you directly.
So why then did it take a trip to see the doctor and a visit to the hospital to get copies of my records?
1. Medical office staff are in inundated with work
2. There is a per page copy fee
3. You may not have been specific enough about which records you need released. There may be too many notes in your file to send the entire record along to another doctor.
4. You need to call or visit the office in follow-up to your written request.
Although EMR (electronic medical records) are gaining in popularity and availability in both doctor’s office and hospitals, there are still many flaws in the system. In my experience, the best method for obtaining and keeping your records is to request a copy at the time of each office visit and/or hospital stay.
Dee Dee & Stephanie
Speak encouraging reaffirming words; the hearing is often still intact when the patient is unconscious
My husband can attest that mind; spirit and emotions are essential for recovery. I recall my spouse and family rallying around me with reaffirming words, praying, singing, reading scripture versus and even when I was in the ICU and/or unconscious for other reasons I could still hear. The wonderful thing is my husband knew this, and he felt that it was critical to remain positive. I thank him for this.
I’m speaking to anyone visiting a loved one who is maybe in ICU or not coherent for whatever reason. Please remember your voices and words can still be heard. Stay positive and be a part of the healing.
Let’s Partner Together to Share Nutrition and Recipe Tips
Some of my more popular blog posts have been on the topic of Ileostomy nutrition (Ileostomy Nutrition: What can I eat after my surgery? and Having an Ileostomy and dealing with ER visits resulting from dehydration)
I received an e-mail recently, from a new ostomate, seeking feedback from fellow ostomates on nutrition, recipes and wellness tips that work well for them based on personal experience. Because my blog posts on the topic of ileostomy nutrition have received positive feedback, I thought it was a wonderful idea to try and solicit the input of other ostomates to develop a collaborative blog post on this subject.
When you see a ‘Call to Action’ that is inspiring and/or thought provoking, how do you respond? If you’re anything like me, your inspired and feel a sense of urgency that something must be done. You might say to yourself that someone with more education, ability, expertise, experience and connections will be the likely candidate to take action. I often wonder what qualifies me to write, inform and inspire others. After all, many others, like me, have encountered cancer and have had several surgeries, radiation/chemo and have even encountered post-treatment side effects and live. What is it that qualifies me?
If not us, then who?
Every significant vision, product or concept first starts with a need, spurred by a desire that is initiated and finally ignited by an individual’s response.
The famous quote from nobel laureate, Sir Alexander Fleming. “One sometimes finds what one is not looking for”.
His research during his military stint inspired him to develop a natural antispectic enzyme which years later led him to stumble on the discovery of penicillin. The need to treat bacteria infections, followed by his persistence and intelligence led to one of the great discoveries in science and medicine. What if he wasn’t persistant in his research?
Statistically, I’m not educated, connected or experienced enough to make an impact that creates change and hope. However, what I do offer is a willingness to respond, a desire to help, and my personal experiences and that, to many, speaks volumes. Some observers might say you’re unlikely to have a significant impact, but you’re living a legacy anyway!
It brings to mind Amos, a farmer and prophet from a small town outside of Jerusalem, was an unlikely choice for a spokesman for the Gospel. Amos didn’t measure up by any means according to the qualifications expected to carry during those times; not only was he a blue-collar worker, but he wasn’t the son of a prophet which is usually the case.
So what should we say qualifies us? Chuck Swindoll said it well, the Power of God is the only clout you need!
How can you help? Share your ileostomy friendly nutrition tips, recipes and restrictions list.
I was talking with a friend the other day who is going through a difficult time and I couldn’t help but notice how dark and dreary it was in her home. The blinds and curtains were shut tight; not a drop of sunshine leaking in. I was immediately reminded of a time when I first came home from one of my surgeries. It was all so overwhelming the lack of strength and will to do much of anything but sleep. Thankfully a friend of mine came to visit me during that time and counseled me about how something as simple as letting the light shine in my home would be beneficial to both my physical, emotional and spiritual recovery.
She opened all of the windows in my home and pulled back the curtains and blinds. Wow this was truly another turning point in my healing.
I realized how by making the conscious decision to let the light in home I was also allowing the light of God and joy back into my life. I was reminded about the most important and powerful light of my life… Jesus! John 8:12 “I am the light of the world. Whoever follows me will not walk in darkness, but will have the light of life.”, John 9:5 “As long as I am in the world, I am the light of the world.” and John 12:46 “I have come into the world as light, so that whoever believes in me may not remain in darkness.”
Maybe you’re going through a tough time and find yourself dwelling on the things that you can’t change. Remember the Lord will always be there to renew your strength. And by taking small steps every day (like allowing the light to shine through your windows) the light of the Lord will shine in your heart and life today.
So what a dear friend did for me a number of years ago I found myself doing with a friend recently and now sharing this with you. Together we opened all of her blinds and started to straighten up her rooms and it immediately felt like hope was pouring back into her home. It was a new start and a new day.
Power verse: Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. (Isaiah 40:30-31)
I received an e-mail forward titled “The Purple Hat” in honor of women’s history month and in memory of Erma Bombeck who lost her fight with cancer. I normally don’t read forwards but I decided to read this one and I’m glad I did because it was the gentle reminder I needed to put things into perspective. I’m learning as I get older to listen more and speak less. We don’t think often enough about the importance of tuning the things out that hinder our growth. Let me explain. I was a hair stylist by profession so I learned to tune out the sound of the blowdryer, radio or the stylest and client next to me. This skill has come in very handy in life. Just recently I was out with my youngest daughter and there was a noise that was really bugging her and I said to her why don’t you just tune it out and she said … how could I do that? When we learn to refocus our minds on something positive we can ignore the negative more easily.
I wanted to write about this topic because when we’re focusing on having ourselves, our homes and families in perfect order before we can start to live this often makes us way too busy for God and we end up missing out on His blessings. God doesn’t call us to be perfect; He calls us to be Godly women (Proverbs 31).
In the writings below by Erma Bombeck, she points out what she would have done differently in life after she found out she was dying from cancer. When I look at the list below I think about how critical it is to learn to tune out the negative chatter in our minds – I can’t have anyone over my home because my carpets are stained, my sofa is faded, my home is way too small especially in comparison to other homes I’ve visited. I need to go on a diet or I’ll just hold you back. But my friends we don’t have the luxury to wait for everything to be perfectly aligned in life before we can start living.
Prayer: Let’s look to Jesus to help us change our whole mindset: Dear Lord, Please give me a mind that is focused on you and others centered so I will not allow my insecurities to postpone my life any longer. I pray that YOU I will do whatever we could and should to take part in life that’s happening around us everyday.
Power Verse: Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus (Philippians 4:6-7)
The Purple Hat: IF I HAD MY LIFE TO LIVE OVER – by Erma Bombeck
I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren’t there for the day.
I would have burned the pink candle sculpted like a rose before it melted in storage.
I would have talked less and listened more.
I would have invited friends over to dinner even if the carpet was stained, or the sofa faded.
I would have eaten the popcorn in the ‘good’ living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.
I would have taken the time to listen to my grandfather ramble about his youth.
I would have shared more of the responsibility carried by my husband.
I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.
I would have sat on the lawn with my grass stains.
I would have cried and laughed less while watching television and more while watching life.
I would never have bought anything just because it was practical, wouldn’t show soil, or was guaranteed to last a lifetime.
Instead of wishing away nine months of pregnancy, I’d have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.
When my kids kissed me impetuously, I would never have said, ‘Later… Now go get washed up for dinner.’ There would have been more ‘I love you, more ‘I’m sorry.’
With love and God’s Blessings,
Email Me: firstname.lastname@example.org
E-mail the techie behind the Chat With Dee Dee (Blog, Facebook & Twitter pages) who happens to be my daughter.