Living with a Chronic Illness

By: Tina Cameron

Not many people know that my two sons and I have a chronic illness that has no cure. It all began when my oldest was 9 years old. He was injured in his karate class (kicked accidentally in the head) by another kid. He was close to having a detached retina, had a black eye, busted blood vessels and spent 8 weeks wearing an eye patch. What we didn’t realize for several weeks was that this kick to his head turned out to be a blessing in disguise. He started having a “clicking” sound when he would move his head up and down or left and right. He thought it was a party trick. Little did we know that it was actually very serious. From his pediatrician’s office we were sent straight to Palmetto Health Richland for STAT CT Scans of his neck and spine. I began getting nervous as they kept coming to get him for more scans. At last, I heard my name being called and looked up and it was the radiologist with my son and tons of CT films in hand. She said Dr. Fred Piehl (pediatric orthopedic surgeon) is waiting for you now. I said, “it is 4:50, they are closing”. She replied, he is keeping the office open for you, you need to go now. I called my mom and my ex-husband and they both met us there.

As we all set in his office, I feared the worst. Corey was in the hallway and he spoke to us first and informed us what his condition was and that it could be life-threatening, and that Corey needed to be aware of it. He was diagnosed with Atlanto-Axial Instability of his Cervical 1 and 2 spine. He could turn, cough, sneeze or get in his head and it cause him to break his neck and with that he could break it and be fine, break it and become a quadriplegic instantly, or break it and it kill him instantly. We went home in shock. Everything changed, from how his bed was positioned, to never being able to play contact sports, diving in my parent’s pool, and his karate career was over. He was also home-bound from school for 9 months. He was 9 hours short of getting his black belt. He what is edsalso taught two classes of karate a week. We were sent to a neurosurgeon and neurologist as well geneticist. After our first visit to the neurologist, he said I think you all have this rare connective tissue disorder called Ehlers-Danlos Syndrome, Type 3. He told me to look it up and then sent us immediately for lab work on another floor in his office building. Shortly after his labs were drawn and we were waiting to leave, Corey grabbed his head and said, “I don’t feel well”. He proceeded to fall out of the chair, had a Grand-Mal Seizure and quit breathing and his heart stopped. I am a nurse and at that moment, I freaked out and was only the mommy. Thank God there were two other nurses there for lab work that revived him. We were on campus of the Children’s Hospital, so we were admitted from the emergency room for the weekend. He was also having incontinence of urine and numbness/tingling in all his extremities. Seizures also go with the Ehlers-Danlos Syndrome (EDS).

Once we had the official diagnosis from the geneticist, I became obsessed with finding everything I could about it. My friends who are physicians had not seen cases in over 20 years. It can affect your heart and affects all your connective tissue in your body, it affects your skin. The type we have, type 3 is now called hEDS (hypermobile Ehlers-Danlos Syndrome). There are now 13 different type of EDS. It is a group of inherited connective tissue disorders caused by abnormalities in the structure, production and/or processing of collagen. So, we have faulty collagen. Collagen supplements do not work for us, because it is our DNA that is screwed up. Basically, the boys and I have easy bruising, easy bleeding, incisions after surgery do not stay closed and we are extremely hypermobile and have soft, stretchy skin. We are prone to multiple dislocations daily, pain all over, bruises that come from something as simple as rolling over in bed. EDSers also have multiple medicine and food allergies and Corey and I do. This condition is hereditary, so unfortunately if my children have kids, there is a 50/50 chance their kids will have it as well. The most serious type is vEDS (vascular EDS)-this is where most people do not live past 35 and they usually die unexpectedly from an aortic dissection. My older son has the most serious case of hEDS out of the three of us and I have it moderately and my youngest just has it mildly.

When Corey was growing up, he began having dislocations from changing his shirt or raising his hand in class, to hip dislocating from walking in the school halls. He went through extensive physical therapy for 3 months and to this day must work out daily. We ended up not having the rod placed in his spine and gradually the numbness and incontinence went away. His instability in his C1 C2 spine has closed some which is wonderful. He learned how to put his shoulder or hip back in place on his own to avoid trips to the ER.

My hip has dislocated once, my shoulder 3-4 times from rolling over in bed when sleeping. I am in constant pain all over almost daily. My knees are bad and slip out at times, so I have braces to wear as needed or when I run. Bruises on my body, stay about 8 weeks where on normal people, just a few days. I even get bruises from fire ant bites.

Both boys have had complete knee reconstructions, at age 16 and age 26. We know we will be facing knee and hip replacements as we age. This condition affects our eyes, our teeth, and pretty much our whole body. Most people with hEDS also have Fibromyalgia, chronic fatigue, migraines, and more.

Knowing that you have a chronic illness with no cure is a hard pill to swallow. However, I try not to let it run my life. I deal with the pain and take Advil with me everywhere. There are days, I hurt so much all over I cannot get off the couch. Many physicians have not ever heard of EDS and many do not believe the patient and think they are hypochondriacs. Family members also doubt us (not mine), but people that I have met in online support groups. We started calling ourselves Zebras because in Med School, thewhy the zebra students are taught to that when you hear hooves, think horses, not Zebras. In medicine, the term Zebra is given to a rare disease or condition. That is how we became known as medical Zebras. Because of the complex nature of our disorder, we are followed by primary care, rheumatologist, geneticist, cardiologist, physical therapist, gastroenterologist, urologists, neurologists and many more specialists as things arise. Some of the friends I have made in my support group are already on disability at 22 and 32 years of age, so I feel blessed that as of right now, my joints have tightened up, I can deal with the pain and that thank God, we do not have the vascular type. I thank God everyday that my boys otherwise are healthy and that Corey’s doing much better and is in great physical shape.

eds scoreSo, the next time you see a contortionist on America’s Got Talent, more than likely, they have Hypermobile Ehlers-Danlos Syndrome. And, if you see someone parked in a handicap space get out and they can walk (just slowly) or is young and, in a wheelchair, —do not judge. Not all disabilities are visible. Because of so many people in the medical field not knowing or even understanding EDS, awareness needs to be widespread globally. Fortunately, May is EDS Awareness month and with numerous online support groups on social media, we are getting the awareness out on what this disorder is. What we need most is for our physicians to believe our symptoms and not dismiss us, or think we are hypochondriacs. There are genetic markers for vEDS, so I am not sure why medical professionals are not believing genetic testing.

eds meme

Summer Fun

By Lisa Baker

Hope you are all having a great summer.  We have had quite a few activities already. At this point we have Dad on hospice care.  He continues to be aggressive at times, however, changing his medication has helped some. My last visit with him I stayed exactly 12 minutes.  He was busy trying to take the closet doors down in his room.  Of course, without any tools he wasn’t going to get that project done, but he had no time for me at all. I tried to get him to sit down and visit with me.  He sat for one minute and was back up working on the closet doors, so I left. He has lost weight and is now wearing pull ups most of the time.  Hospice helps out by providing the pull ups and his medications among other things.

pic 1_fallen limbDuring a bad storm a week or so ago, we lost electricity.  We live close to Dreher Island State Park. By that evening my husband decided we would go to a motel for the night. I’m not sure exactly when our electricity came back on, but when we got home Sunday morning it was on. It’s amazing we didn’t have a tremendous amount of limbs down in the yard.

That afternoon, I went out to take some pictures. Our yard has several areas that are rocky and uneven.  I somehow managed to fall right on the rocks. Yes, I had shorts on, so I really hurt my knees, especially the left one.  They are all scraped and scabbed over. I also sprained my right wrist and managed to hit the side of my head, breaking my glasses.pic 2_sprained wrist

I hurt so bad that I told my husband to take me to urgent care. Thank God nothing was broken. I have never hurt so bad in my life. The doctor gave me a work excuse for the whole week and I hurt enough that I followed doctor’s orders. I’m still sore even this week, but not as bad as last week. I’m slowly healing.

pic 3_Lisa and husbandOur summer has been not so much fun but full of adventure for sure. Through it all, my amazing husband continues to be my rock.  He always supports me in everything I do. 

Make memories and have a safe summer!

Lisa 

Summer of 2019: Trial Run of an Empty Nest

By Janet Prince

pic 1This summer, Gary and I have had the opportunity to have a trial run for when we have an empty nest. Our youngest has attended two trips leaving us home alone for the first time in almost 22 years! We have always joked that when the nest was empty, we would start dating again, and we did!

We went out to dinner alone one of the nights. Having time to have dinner alone in a restaurant with out the girls and their friends was a rarity. But of course, what did we talk about? The girls! Our life has always revolved around them and it seemed that not having them with us put us a little off balance. In our little family we have always moved as a unit. We go most places together and even when we are home, the girls have always spent time with us on the porch talking and watching TV. On another date, we made it a double with Ashlan and her husband Joe. It was a lot of fun getting to hear everything going on with them and it let me get my “mama fix”!View of beach at Huntington Beach State Park, South Carolina, USA

Summer has always been a great time to travel and to relax. The beach and the mountains are always our go-to places. We have our favorite places to go eat and our favorite things to do in both mountainsplaces. We always do the same things, but they are things that make us happy and things that the girls always looked forward to. I guess we can be called creatures of habit. Every place holds a special place in our memories.

Summer also means some separate traveling for Gary and me. The last weekend in June each year is when I travel with many others from our state to the GFWC Annual Convention. This year we were in Austin, Texas. We had lots of laughter and catching up with members from across our great country. Although it can be tiring it allows me to come home rejuvenated. Spending time with my girlfriends on these grand adventures is something I look forward to each year. Gary also gets to travel, but his is for work.

Our trial run of an empty nest has been good for us. We have had time to talk about whatever we wanted, and we learned that yes, we will be alright when the nest is really emptied. But for now, we are glad our nest is still full!

Until next time,

Janet

Honoring our Dads

By Rachel Sircy 

This past weekend was Father’s Day, my sister’s wedding, and my nephew’s birthday party. Sound busy? You have no idea.

I want to dedicate this blog post to the man who made all three of these things possible at once, that is my stepfather, Bob Wachenschwanz. He’s a man with a big last name and a bigger heart. Not only was my sister’s wedding this weekend, but my parent’s backyard was the site for the reception. A party tent had to be erected, tables and chairs set up, decorations set out and then all of it had to be cleaned up that same day. Bob – with help from my sweet husband (also a wonderful Dad whom I would like to honor), my brother, new brother-in-law and the groomsmen – did all of this, and still managed to walk my sister down the aisle, take my nieces and nephews on a wagon ride, and host a dinosaur-themed birthday party. At one point before the wedding, a strong wind knocked over the party-tent and badly damaged one of the poles. The groomsmen gave the tent up for lost, but then Bob showed up with his multi-tool in hand and straightened out the pole by himself. One of the guys said that he must be Macgyver, which is actually what my sisters and I used to call him when he and my mother were first married. We also referred to him as Bob the Builder – after the children’s TV show character, because the theme song to that show goes, like this, “Can he fix it? Yes, he can!”

I am sharing this story because this weekend I was reminded what a treasure I have in my stepfather. I wanted to thank him and let him know how much I love and appreciatefather and kids him. Men who put in the time and effort to love and care for their children are hard to come by and I don’t want to take Bob for granted.

I want to encourage all of you readers out there to take some time this week, or this month, to think about and show your appreciation for the wonderful Dad in your life – whether he is living or is gone, if he’s your stepfather, uncle or just a dad you happen to know. Let him know that you see his hard word and you are thankful for him!

Summer Road Trip Series Part I: Go West Young Man

By Marianna Boyce

arizona sign (p1)Have you ever heard of Sierra Vista, Arizona? It’s a great little city in Cochise County about twenty miles north of Mexico, but 1,921.5 miles west of South Carolina. You’ll discover the reason Sierra Vista holds a special place in my heart as we travel west for my summer road trip series.

rocky wall w flag (p2)In a day where everyone is in a hurry to do everything, flying the friendly skies makes more sense, but my preferred method of travel is the traditional American ‘let the top down’ road trip to see the beautiful sights our country has to offer. Gerry and I have done both—many times.

We embarked on this long journey with our daughter Tiffany and her family in 2015. Our son Cody was unable to go with us, but he expressed interest in our taking the same exact route to this special little dot on the map the following year. He knew it wouldn’t take much to convince me of another opportunity to drive west.

I had kept a journal of our original trip, so we easily charted the same course in 2016. It was awesome knowing exactly where we were going and how long it would take to get there; but for this adventure, we made no hotel reservations. We threw caution to the wind and prayed God would protect and have us in the right places at the right times. Talk about faith. Be sure to read my future posts to see how that worked out for us.

Of course, as a woman, I packed everything but the kitchen sink days in advance. It was neatly organized in the dining room waiting for our departure day of June 8. I even packed lime green spray paint…

Gerry was slated to drive the first leg of the trip, so he took the day off to rest while Cody and I worked. Once I arrived home, Gerry neatly arranged everything in the trunk of my light sage-colored Lincoln MKZ. Over the years, I’ve learned this process is much easier when I’m not involved. His goal was to leave the backseat open for whoever needed to rest or just enjoy the ride. The only thing he tossed inside the car was a comfy pillow and my purse.

We planned to leave that evening in order to travel as far as we could while traffic was light. Have you ever driven through Atlanta at lunchtime? Exactly!

After a quick burger, fries, and frosty at a local fast food restaurant for supper, we embarked on our wind-in-your-hair road trip. I chose the backseat to start our journey, but took a silent vow to leave my backseat driving instructor mentality at home. I can’t express how difficult that was for me.

blinding sun (p9)The sun was blinding as it set in the western sky, so I put on my sunglasses, placed that comfy pillow behind my back, and propped my bare feet up on the console in front of me. “Go West, young man,” I recall saying to my husband. “Life is good!”

We drove west on I-20 all night and left South Carolina, Georgia, Alabama, and Mississippi in our rear view. There’s not much to see at night, so Cody—being in line to drive—catnapped. My job was keeping whoever was driving awake, but I was still careful to leave my backseat driving wisdom at the house.

early morning sunrise (p11)After twelve hours, we decided to stop in Monroe. The sun was peeking over the eastern horizon, so we thought stopping for a hearty breakfast at Waffle House was a great way to greet the new day. Not to mention, we were also in desperate need of strong coffee.

For those who remember the television show, Duck Dynasty, the Duck Commander store was only a few miles down the road from Waffle House, so we stopped by to see if Phil, Willie, Jase, or Si were there. It was still very early, so their store was closed. We walked around in the parking lot for a few minutes before heading west again on I-20. It felt good to stretch our weary bodies after the long ride.

 

With the first leg of our trip in the books, Gerry took over the coveted backseat to get some much-needed sleep. Cody gladly took the wheel while I rode shotgun. I gave him a gerry sleeping (p13)tough choice between me or Siri as his trusty navigator. He chose wisely: Siri it was.

From Louisiana, we headed toward the great state of Texas. Of course,cody driving (p14) any amazing road trip wouldn’t be quite as good if you didn’t sing, “On the Road Again,” in your best Willie Nelson twang. In spite of mine and Cody’s bellowing, Gerry was asleep in mere moments…

*The photos used in this post are personal photos from my amazing road trip. They may not be the best quality, but they are all near and dear to my heart. Enjoy!*

God is good!

By Lisa Baker 

Hi everyone,

Yes God is so very good isn’t He. Let me explain…

 

With everything that has happened in the last few months there are still blessings to be had. Mom has passed and I have had some tough days almost immediately. About a week later was her birthday and then Mother’s Day. It’s been a hard few months. My son and his wife are expecting and their due date was May 19th.  My daughter in law started having high blood pressure, so they admitted her to keep a close watch on her. They decided to induce.  Their sweet baby boy was born in the very early hours of Mother’s Day.  What a blessing.  

pic with baby

No way can you top Mother’s Day with anything else.  Meet my handsome and very precious grandson, Baylor.  I’m so in love! God took a holiday that would have been very tearful and gave us a brand new reason to celebrate and give thanks! In other areas, dad yet again has been sent to the ER.  He was very aggressive, kicking and punching a few residents.  The ER basically just let him sleep and did not run any tests. They sent him back to his facility.  The nurse was going to try to get him to give her a urine specimen so it could be tested for a UTI.

 

dementia picWe are still having our own ups and downs dealing with the loss of Mom.  Some days are great.  Others not so much.  I’ve had a few dreams with her in them.  I have recently gotten her life insurance in and have paid her bill at the funeral home.  I have also gone to Probate court to handle her affairs and file her will.

 

Sometimes I will get ticked off easily over little things it seems.  Thank God for my amazing husband, Carl.  Somehow he knows just what to say or do to help me out.  He is a true blessing. Then my sweet new grandbaby, Baylor, makes all seem right with the world.second pic with baby 

So now our next step will be to pick out and pay for a headstone to mark Mom’s grave. One that will have both Mom and Dad’s name on it so later all we will have to do is get dad’s date of death engraved on it. I will let you know how that goes at a later date.

death changes nothing quote

 

So until next time, make memories!

 

Role Models…

By Shannon Boatwright

We’ve recently celebrated Mother’s Day and I’ve just started a grad class.

These two things got me thinking…

For Mother’s Day, I had the privilege of enjoying a whirlwind of a weekend full of special time with family. I consider my greatest accomplishment ever, that of being a mother. My two incredible children never cease to amaze me and the fact that I carried them, survived giving birth to them and get the honor of helping raise them, well, it seriously blows my mind.shannon

The day after Mother’s Day I began a grad class on the nature and needs of gifted students. One of my first assignments was to take a quiz about Distinguishing Myths from Realities concerning the nature and needs of gifted students. It was definitely an eye opening little quiz.

So between celebrating Mother’s Day and then reading this grad class material, it got me really thinking about the role models in my life. Within the quiz, one of the statements that I had to choose whether I thought it was a myth or reality, stated, “Primetime, commercial television offers inadequate and inappropriate role models for gifted children.” In the response for why this is a reality, it is stated, “Reality: Only 9% of all the new programming during the past decade has had one or more children in the starring or title role, despite that over 17% of the nation’s population is under 13 years of age. Gifted children are also highly underrepresented and typically depicted as social misfits (Ableman, 1992).”

Interesting indeed and definitely thought provoking. Today’s primetime television is definitely VERY different from the days when I grew up watching television. I feel like there were WAY more positive role models on television back when I was growing up.

But instead of battling my way through a discussion on this topic of the current lack of role models on television, I’d like to focus on what this topic stirred in me. This issue, along with Mother’s Day, made me think about all the amazing female role models I have in my life. When I stop and really think about it, I recognize how truly blessed I am to have so many strong, super and spectacular female role models in my life. Ranging from the incredible women in my family, to close friends, to colleagues, to mentors, even iconic leaders, actors and other famous female warriors who inspire me.download

In an age when equality is still a prevalent issue, having positive female role models should be a very important part of your life. We need positive examples that lead the way and inspire us ladies. As a mother, I know I make it a goal that my children see me being a good person, doing extraordinary things, contributing to society, bettering myself and making a positive difference in others’ lives. Like the pride I have in my own mother for being such a strong force of a woman, having a beautiful teacher’s heart and for sharing her awesome talents with others, I want my own children to be proud of my accomplishments and what I do with my own talents and strengths. My prayer is that they’ll be inspired and admire. I could write a book about all the outstanding, female role models in my life and I am ever grateful to be blessed with so many super women to have been influenced and inspired by throughout my lifetime.we can do it

Take a moment to think of all the positive female role models in your life. What have you learned from them? How have they inspired you? Then ask yourself, how am I a role model to others? As intelligent, incredible and strong women, we owe it to ourselves and to those we love, to be a shining light for others.