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Category Archives: Christian Faith

Inspirational vistor

I was thinking about a visitor I had after my first surgery when I first had my colostomy (this is going back 25 years ago). I remember a very joyful woman coming into my room and exuberantly sharing that we had something in common. I could barely lift my head from pain and here she was just as happy as can be what could we have in common? It turns out she was a cancer survivor and she wanted to share her experience and encourage me to have hope for recovery. She was, in fact, very encouraging and maybe that brief visit was just what I needed that day.

I retell this story because I recently discovered a Facebook page of a very inspirational woman who reminded me of the visitor I had that day. Barbara, like my visitor, has no prior relationship with the people she visits at the hospital, but she does it out of a compassion for others. To many its inexplicable, but to the people who dedicate their time to visit cancer patients, children and/or hospice patients it’s unexplainable how life changing and rewarding it is.

“Barbara Taylor Vaughan is 89 and in the beginning stages of Alzheimer’s. She started a Facebook page to help chronicle her illness and put a face on Alzheimer’s. Barbara hopes educating others will inspire them to volunteer to help ease the suffering of those with the disease, families, caregivers. She recently shared a post chronically a story of when she belonged to a group that would sit with hospice patients that had no family or friends.” I would like to encourage you to check out her Facebook page and read this encouraging post.

“I expect to pass through this world but once. Any good therefore that I can do, or any kindness or abilities that I can show to any fellow creature, let me do it now. Let me not defer it or neglect it, for I shall not pass this way again.” ~William Penn

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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Love Your Body (Haves vs. Have-Nots)?

We read about body image and how we’re meant to love the skin we’re in. However, I haven’t read many articles about how body image impacts those facing post-cancer and post-raditation/chemo side-effects.

We’ve become more sensitive to those struggling with body image; however, what about those struggling with physical limitations. Can we be thankful for our bodies? How do we beat body image issues related to our limitations resulting from cancer?

What’s Driving Our Perceptions

The tendency is to view our body image through the eyes of what media might suggest as being beautiful. We focus on the ‘have-nots’ instead of what we have. We struggle with self doubt when we wake up and look in the mirror every morning.

Bottom line

We must remind ourselves this time was not promised to us. It’s true each day is a gift so let’s do the best we can with what we have by using all we have. Remember a time when pulling through a surgery or treatment was the most important goal. Now walk humbly and seek love and kindess towards others and also love and be kind to yourself.

We’ve all enjoy singing along to the popular lyrics from the song originated in the 40’s “You’ve got to accentuate the positive Eliminate the negative Latch on to the affirmative Don’t mess with Mister In-Between”.

The pertinent message conveyed in the song is still relevant to this day. Enhance the positive features, personality traits and gifts that you have going for you.

If we allow our thoughts to mess around with “Mister in-Between” we’re making an active choice aren’t we? I believe we are choosing to focus on the ‘have-nots’ instead of the beautiful ‘haves’ … the gift of LIFE!

You are beautiful my friend, you are fearfully and wonderfully made (Psalm 139:14)!

Haves or Have-Nots ..which side are you on?

 

Sunshine – Are you neglecting your emotional health?

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)

 

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Be anxious for nothing, Learning when it’s OK to tune in or tune something out

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,

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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Guest Blog Post 7: Our Family’s Story by Josephine Angst~ My Daughter’s Diagnoses (Pituitary Dwarfism/Growth Hormone Defficient due to Ectopic Posterior Pituitary)

This is another guest blog post that is so very near and dear to my heart. We’re sharing this story from a friend who is truly more like a family member to us. It’s my desire by sharing this story we will help bring awareness to the challenges of  Pituitary Dwarfism/Growth Hormone deficient due to Ectopic Posterior Pituitary.

So please scooch in closer and get ready to read this inspiring family story about little 4 year old girl we’ll call MIGHTY MIKAYLA.

Guest Blog Post 7: Our Family’s Story by Josephine Angst With this blog we are hoping to bring awareness and sensitivity to all People across the world big or small. We believe with knowledge comes compassion, and we hope to pass on the knowledge we obtain along the way.

WATCH OUT WORLD HERE I COME

Our Story about our daughter who just happens to be Growth Hormone Deficient as is relates to Ectopic Pituitary Dwarfism.

Our story begins with our 4 year old daughter Mikayla (AKA: MIGHTY MIKAYLA)whom I also admire and am so very proud of. I don’t think many would be as brave and strong as she, by four years old she has been through more than I have been in my entire 37 years.

Mikayla 4th birthday

Mikayla 4th birthday

 Mikayla is the 3rd of my four children; she has been diagnosed with Pituitary Dwarfism/Growth Hormone Deficient due to Ectopic Posterior Pituitary at 1 1/2 years old (learn more about Growth Hormone Deficiency online at the Major Aspects of Growth In Children (MAGIC website). Our journey with Mikayla has been a long one and unfortunately with no end in sight but still we thank God everyday for the medical break throughs that have made her quality of life possible or even life at all. My pregnancy with Mikayla was just like any other I had prior (2) but right from birth I knew something was different (mothers intuition is never wrong). I was admitted to the hospital to deliver Mikayla a few days earlier than planned because my amniotic fluid was low so doctors thought it would be in her best interest to be induced. That plan did not work out because apparently she went into distress and I needed to have a c-section. All went well though despite the drama. A healthily (so we thought) 6lb 11oz beautiful baby girl was born. I knew something was different from the start I didn’t have such small babies, my two prior babies were 8lbs, and 8 lbs 9 oz (even my last baby after Mikayla was 9lbs,3oz) so I wondered from the beginning why she was so small, but everyone told me she was fine.

Throughout her first baby months Mikayla seemed little different to me as compared to my other two children. She seemed a little more tired, weaker and not as hungry. Mikayla would drink a 4 oz bottle and spit back up half of it. I was so worried but it was not until her 4month well visit that her doctors finally agreed with me. Something was not right; she had fallen of the so called CURVE. All mothers know what I mean by the dreaded CURVE. It is a national standard that all babies are compared to that guides doctors to know if your child is growing normal.

Normal what is that, four children later discovered there are many different kinds of normal? Mikayla’s pediatrician thought the best place to start out to find out why she was not growing properly would be the Feeding and Swallowing Center at St. Joseph Hospital. He thought that maybe it was nutritional being she was spitting up so much and eventually found she did have GERD.

He also suggested we make an appointment at and Endocrinologist at St. Joseph Children’s Hospital as well. I left that doctors office that day heartbroken. I was so scared and couldn’t believe what I had just heard “FAILURE TO THRIVE” what does that mean anyway, were they telling me she was dying? I know now they were.  I made the first possible appointment at the FASC (Feeding and Swallowing Center) where I spent 2 days a week for the next year. They would watch me feed her through a double sided mirror window. Maybe it was me maybe I wasn’t feeding her correctly I thought. Oh my God how horrible this was. Mikayla also received OT (Occupational  Therapy) there for her trunk muscles, her GERD had torn right through her stomached muscles and they needed to be repaired with exercise and she needed to have her abdomen taped with this tape that looked like packing tape. I would watch as this therapy went on through a window and I was instructed that no matter how much she cries I should not come in unless I am called. They told me this was going to be very hard work for her and I needed to be strong. Strong was an understatement, my baby would call for me and I would watch and cry behind the window because I know I couldn’t help her. They would tape her legs together so she could learn to crawl and so many other things that I couldn’t bare to watch. Although the therapy went well, it still didn’t solve her growing issue. Week after week they would measure her and weigh her and still nothing.

We finally got an appointment with an Endocrinologist (took a few months to get one) we were nervous but anxious. We needed to know what was going on and we were hoping she was our miracle. We went into the doctor’s office and she took Mikayla into her hands and called her “floppy” like a rag doll. I was in shock I haven’t even noticed this. The doctor pointed out her bossing forehead, and thought that the white of her eyes were bluish color (which could of meant she had x factor or Brittal Bone Disease) that would have been very bad. She couldn’t help us and referred us to a Genetic Counselor. The Endo had also suggested that we call in Early Intervention Services which is a program the state runs to help children receive all the therapeutic services they need. We followed her instruction and soon after Mikayla was receiving in home therapies such as (physical therapy, occupational therapy, speech therapy, and DI direct instruction) these service would continue until she was three years old several times a week.

We weren’t sure what to expect from the appointment with the Genetic doctor but we couldn’t wait to get there, someone had to know why Mikayla wasn’t growing and was so weak. So many different theories were explored (Celiac disease, Hypo-Achondrplysia, Brittal bone disease, Cystic fibrosis). Mikayla had a full genetic screening done and no answer. I can say I have never been so afraid in my life. Time was going by and still she wasn’t growing and even though I would have dreaded to hear she had one of the horrific things, at least I would finally have an answer. Our lives were on hold how could I go on being happy if I didn’t know whether my daughter would live or die. From here we were told that she should be re-tested in 6 months to a year for Hypo Achondroplysia or Dwarfism. This is a kind of Dwarfism that isn’t the typical; you are proportioned correctly however you remain very small. This seemed like a reasonable answer but it could never be confirmed. We couldn’t just wait and see and let it sit. We saw a skeletal dysplasia specialist in NYC Cornell, she had x-rays of her long bones and plenty of blood work and there they found that she definitely did not have any form of Skeletal Dysplasia. The doctors there referred us back to the Endocrinologist. For the first time we heard the words Growth Hormone Def. they felt it fit the pattern of this and it should be explored. So back to the Endo it is.

This appointment with the Endo would be better and help lead us into the right direction. The doctor scheduled a MRI of her Pituitary gland. We waited for the results and then finally an answer. The doctor confirmed she had a problem with her pituitary gland. Ectopic Posterior Pituitary Gland with a small stem. The Growth Hormone that we all naturally produce she couldn’t make enough of. I didn’t know it at first but I soon learned that Growth Hormone does not only effect your growth (how tall you will become) but it also contributes to your muscle tone and your body’s ability to maintain its sugar levels (hypoglycemic). This explains a lot, Mikayla had very low muscle tone and was very Hypoglycemic she had even been hospitalized once for it.  The Endo had to order another test before she could start treatment (this one is for the insurance companies) it is called a STIM test. What a horrible test, she couldn’t make it through the whole thing. This test requires a series of injections to raise and lower your blood sugar levels while they collect your blood samples. Mikayla’s blood sugar dropped to 32 that day and the test was canceled.  The doctor saw all she had to see and we were told we had nothing to worry about the diagnoses was clear she was definitely Growth Hormone Def. The plan of action was that she would have to wait until she was two years old to start on her Hormone replacement therapy. I was told that I would have to learn to give her a daily injection of GH. This would continue at the minimum until puberty or longer depending on her situation it would be a wait and see thing. Mikayla had to have further x-rays called a bone age. This tells how old your bones are and usually determines how much growing you have, the longer the better. Mikayla has approximately 9 months delayed bone growth. 

One day after Mikayla’s second birthday she started her GH Therapy. I had to be strong and give her these shots even though she begs me not to. Mikayla’s life depends on it. Most people do not understand and feel it is just a vanity thing. We have learned that it is so much more. Yes because of the Hormone replacement therapy Mikayla will be taller than her expected height of 4’2″ she will reach only her growth potential based on her on family genetics which anyone who knows her parents know that isn’t very tall any was she will probably be around 4’11” to 5’2″ . Mikayla will also have stronger muscles (includes heart muscle) and her Hypoglycemia is under control. This has affected many things along the ways and Mikayla has many physical and learning delays but she is THRIVING and for the first time since she was four months old she is on the dreaded CURVE!! She went from -5 to the 10% in two years.

Mikayla still receives speech and physical therapy and is in a special services preschool. It is hard for Mikayla to make friends with peers her own age as they see her as a baby. We see her doctor every three months to have her medication adjusted and to monitor her growth. This has also affected her teeth as they are also bones and do not grow properly. Mikayla has had a lot of dental surgery. Sometimes it seems like every year we discover something new that is affected by her condition, from her ability to learn to her physical health. We don’t know what the future holds but we do know how far we’ve come and are so very thankful to God for this chance he has given her to THRIVE to the best of her ability.

Thank you for this opportunity to spill my thoughts and thank you for listening.

Josephine

Resources:

http://mightymikayla.blogspot.com/ Meet Mikayla our little blessing. She is a vibrant and beautiful little girl. She will capture your heart and make you smile who just happens to be Growth Hormone Deficient as is relates to Ectopic Pituitary Dwarfism. We have finally learned the world must conform to Mikayla not Mikayla to the world.

With this blog we are hoping to bring awareness and sensitivity to all People across the world big or small. We believe with knowledge comes compassion, and we hope to pass on the knowledge we obtain along the way to all that stop her.

Major Aspects of Growth In Children (MAGIC) is made up of 25,000+ families whose children (and affected adults) have growth hormone deficiency or other medical conditions which affect their growth. While growth hormone deficiency is the most commonly known disorder it is not the most common cause of growth failure. We- the parents of MAGIC, fought to find answers for our children’s lack of growth. It was not an easy road. And because our children were finally diagnosed with growth hormone deficiency and a variety of other growth disorders, we are passionate about getting information “out there” for other parents.

Welcome Luci Magic Foundation George The Race Blog and Pics Donate Learn more about…
Donate Here! http://www.luciandgeorge.com/on The Magic Foundation web site. Please visit this site I know that once you read it you will feel as touched and eager to help as I was, having a child with a illness can be challenging and life changing but if we all lend a helping hand in some small way it will make a BIG difference to a family.

Maybe there is someone in your life right now that is dealing with a difficult medical, physical, financial and/or emotional challenge and maybe you’re not quite sure how to respond to them.  The good news is you don’t need to have the all of the answers or be an expert counselor to have a positive response. I know we are often compelled to give advice it’s quite frankly a natural first reaction. But from my experience as someone who has dealt with my share that’s not what we really need when we’re facing difficult situations. So that’s why I feel pretty strongly that we can more positively respond by praying with the people we encounter and/or praying for them and by being a great listener. I find caring is best expressed by just being there for the people in our lives when they need us most.

If you would like to write to Josephine with questions please send your letters to me littledeet@yahoo.com with subject line “Questions for Josephine about MIGHTY MIKAYLA”.

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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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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Guest Blog Post 6 – Enterocutaneous Fistula (ECF) By Donna B.

I know I’ve said this before but it is still very true and poignant. We don’t plan for illness and when it happens we are too busy trying to pick up all of the pieces that it’s difficult to pay attention to the details.  

I recently received an e-mail from a lovely new acquaintance I made through my blog. Donna wrote to me to share her healthy story and how she was diagnosed with Enterocutaneous Fistula (ECF) and what she has to go through between diagnosis, prognosis and treatment. She was inspired and motivated to share her story because of her 8 year old daughter.

The reality is none of us, including me, would ever plan for a health issue. We don’t foresee ourselves or our loved one incurring a life altering medical condition so when it hits us we’re almost always unprepared.  I want to help bring awareness to the topic of external fistulas (specifically ECFs) and help others who are suffering to get help and feel comfort in reading a story from someone who’s been there.

The good news is we’re not alone. I’d like to share a few external resources I discovered that might help someone with ECF.

No insurance/co-pay assistance:
Patient Advocate Foundation
http://www.patientadvocate.org/help.php?p=153
help@patientadvocate.org
421 Butler Farm Road
Hampton, VA 23666
Phone: (800) 532-5274
Fax: (757) 873-8999

On Sunday Dr. Stanley spoke on the topic of Impact vs. Impression.  He put it in very plain terms…. an impression is what a person leaves behind like when he brags about his possessions or lifestyle. Often something people tire of hearing about. An impact is something that changes another’s life. We don’t always remember all the specifics of what the person did but we know that they impacted our lives in a positive way.

So how can we make an impact? We are to “Bear one another’s burdens” (Gal. 6:2)

It’s my hope that his message will encourage someone who has been diagnosed or living with ECF.

Guest Blog Post 6 – Enterocutaneous Fistula (ECF) By Donna B.

My name is Donna and I am a stay-at-home mother, going to college online, fulltime alongside my husband of nearly 10 years. I was motivated to write and help others because I believe in sharing my story; others who are in the same boat as I am will feel better about their personal situation and know they are not alone.I must let you know that I am not a cancer survivor. I have not been diagnosed with having any kind of cancer, at least not yet. There has been talk that I might have some sort of cancer, but after blood tests, endoscopies, CT scans, bronchoscopes and a colonoscopy, nothing has been determined, there is no known cause for my fistulas and I am still losing blood somehow. My doctor now thinks that I might have an autoimmune disease, but because I don’t have insurance I can’t go get blood tests done. My situation is unique because I had two enterocutaneous fistulas erupt, the first one in September of 2010 and the second one a few months later. The second one started out much as the first, a hard spot and the original fistula was misdiagnosed as ‘cellulitis’ and was treated with antibiotics which did nothing because it was not ‘cellulitis’ obviously as less than a week after I was treated with the useless antibiotics and more than one kind, mind you, the spot expanded up (like a balloon being blown up) and erupted during the night, spewing blood, pus and human waste onto my bed sheets. I woke up the next morning to it, knowing full well to expect it. I know my body really, really well.  
 

At that time, since I didn’t know about ostomy bags, I used gauze pads and tape to cover the opening and did that for a while until I found a new doctor (after going to the emergency room for it) and started seeing him on a regular basis for this new journey I had begun. A few months later, another hard spot developed below the original site, I went and saw my doctor. He was as befuddled by my situation as was the first doctor, but, instead of doing nothing about it; he went and got a bottle of what I am guessing was a local anesthetic and a syringe. He filled the syringe with the liquid and proceeded to poke and inject around the site, all the while I am screaming and crying in pain. Once the site was numb, he withdrew some pus and said it was just a site that didn’t tract down far and sent me to the hospital for a CT scan to determine if it was a fistula or not. The CT confirmed it was not a fistula. Well, that turned out to be incorrect about 4 months later as I started spewing pus from it and now it is a gaping hole, bigger than the top one. Still spewing pus, but that’s it, so far. I now wear two ostomy bags and I hate them. But they are much better than gauze pads and tape – which only cause the skin to break down and I would be in much worse shape than I am now, so I am very grateful for them. 

I will not have any kind of surgery to correct them, because to this point I have had 6 major abdominal surgeries, am not a great candidate for more, and I am afraid that the remaining three feet of small intestines that I have left would end up being taken out and I would end up in much worse medical shape than I am now. I have an 8 year old daughter who needs me to be in the best mental and physical shape as possible and I can maintain that, with an internal pouch or something other than what I have now, I am not so sure. So… 

As for valid resources, I would say contact your local American Cancer Society. They have free ostomy supplies and support. I found a local ostomy support group in my area through United Ostomy Associations of America, Inc. (UOAA). I also have an online support group called C3Life and another one with the Oley Foundation. I still haven’t joined the Short Bowel Syndrome support group; however I did find them on Facebook. I never knew there were so many different places that offered support and free or nearly free supplies for ostomates who have limited or no insurance.  Thank goodness, too because without these places, a lot of people would be in dire straits and that is no way to treat your fellow human beings. 

My inspiration and motivation for sharing my story is my 8 year old daughter.I am surviving this for her. Granted, I don’t have cancer, but I am suffering and am in pain every day. Until I get my insurance back and am on pain meds. 

Thank you for allowing me to share my story.

If you would like to write to Donna with questions please send your letters to me littledeet@yahoo.com with subject line “Questions for Donna”.

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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Posted by on July 18, 2011 in Christian Faith, inspirational

 

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