Breakfast varied from place to place. In parking lots, we usually stuck to cooking inside which was either grits and toast for both of us or oatmeal for me. If we were in a hurry, Chip would eat muffins and I fixed me a bowl of oatmeal to go. I typically eat oatmeal seven days a week, as being gluten-free, sugar-free and dairy-free it limits your choices. I don’t always stick to it 100% but I rarely fudge on breakfast, unless I am at a Cracker Barrel, and then all food restrictions are out the window. When we camped anywhere but a parking lot, Chip would cook bacon and eggs for himself outside on the table-top stove and his cast-iron frying pan. There is nothing better than the smell of bacon cooking on a camp stove. I love the smell of bacon even though I do not eat it.
The next leg of our journey, Saturday, September 14, 2019, was going through the rest of Ohio, Indiana and into Illinois. We stopped for lunch at Jubilee College State Park. It is a beautiful park that once was a college but closed in the late 1800s and the land was eventually given to the state of Illinois. The park offered cheap camping at 8.00 a night, but it was too early to stop for the day. But if you are in the area it would be worth checking into. We enjoyed our picnic lunch on one of the many picnic tables they had scattered throughout the park. We decided to take a short hike to stretch our legs, but could not find the trailhead, so we gave up and were once again on the road.
We made it through Illinois, and into Iowa. As noted before the scenery though beautiful consisted of miles and miles of you guessed it more corn, soybeans and an occasional sunflower field. I would have loved to have seen the sunflowers before now, as they all are tired of standing tall and beautiful, and instead are limp at the neck, looking down, not up, even when the sun was shining. I thought I had a picture, but I can’t seem to find it. If I find it amongst the thousands of pictures, I will share it later, though I am sure all of you have seen sad sunflowers.
There were fields and fields of something that stood tall and moved in the wind that I was completely obsessed with Illinois and Iowa. Do you know what that might be? Windmills! Miles and miles of them. They looked tiny until you got up close and they were huge. Chip asked me after a while how many pictures could one possibly take, of a windmill. They all looked the same, but they were so cool looking. We even saw windmill blades on trucks. Well let me correct that; you would see one blade on an extra-large truck with lead cars displaying wide load signs. To me, it was just an amazing sight. And of course, I had to read about it. Texas has the most windmills in the US followed by, yes, you guessed it, Iowa. We saw some at times that were not turning. I learned the most common reason that windmills stop spinning is because the wind is not blowing fast enough. Most windmills need a sustained wind speed of 9 MPH or higher to operate. I also learned they are 280 ft tall and have three 120-foot-long blades. I could share a lot of windmill pictures with you, but I will spare you and share a few of my favorite ones.
Did you know the Worlds largest truck stop is in Iowa? I didn’t either. I did get a picture, but Chip wasn’t interested in stopping, as it was packed and we had a destination and Iowa 80 was not it. I did, of course, google it and learned this:
On the eastern edge of Iowa, not far from the Mississippi River, adjacent to the small town of Walcott, you’ll find a place like no other in the world. The Iowa 80 Truckstop, now the World’s Largest Truckstop, established its home here in 1964 and is now in itself a home away from home to countless drivers and a destination for travelers as well. Some say Iowa 80 Truckstop is like a small city, others have likened it to a Trucker’s Disneyland, all can agree it is a place not to be missed.
You may want to check it out if you are traveling in that area. I definitely will plan on stopping there if I am in that area again. I will hold my potty break until we are close and then “have” to stop. Yep, that is exactly what I will do next time.
I love truck stops; they have the neatest things in them for sale. I did get lost in a couple of different ones on this trip. In one of them, I was looking for the bathroom and went into the lounge area where only truckers are welcome. It was nice, but I did get some funny looks. The next mishap I again was looking for the bathroom and there was a sign that said restrooms, nothing more. I thought it must be a hallway to the bathrooms, but I walked right into the men’s bathroom. Thank God no one was standing at the row of urinals that clearly meant I was not where I was supposed to be. Though it did bring back a memory of Los Tres in Danville. I remember going into the ladies’ bathroom and seeing a urinal and going back out to make sure I was not in the wrong bathroom. I have no clue why there is a urinal in the ladies’ bathroom. This was back before all the gender things of today. I did make a purchase in one of the first truck stops we went into. Many of you remember me taking a poll about prescription sunglasses or transitional glasses. I elected to get prescription sunglasses, with polarized lenses since we do so much fishing. I was so excited to pick them up before we left. When I tried them on at the eye doctor I felt “whoozie.” By the way that is not a word, but I am sure I am not the only person who has ever felt “whoozie.” I told the lady they made me feel funny. She asked me if I could see and yes I can but they literally made me feel as if my equilibrium was off or something. I think she thought I was crazy as she didn’t even comment on it. I left feeling disappointed but I thought I would try to get used to them, but it did not work. By the end of day one I had already put them back in their case, and in the dashboard for safekeeping. I have since googled it of course, and it does happen. It has something to do with the shape of the glasses. It seems there is an optical focal point and that it is more difficult to put it in the correct place on curved lenses. At the truck stop, I purchased a pair of polarized clip-on’s and they worked just fine for the trip. It was just a pain to keep up with them, clipping them on and off. I am not sure what I will be doing about sunglasses. I wish I could have Lasik surgery but supposedly it is not recommended for people with RA. I am going to talk to my rheumatologist about that on my next visit. It is bad enough to have bad joints, why does RA have to affect anything other than joints? Trust me, it does, and that is an entire blog in itself. So back on topic. The other purchase I made in that same truck stop was Cinnabons, 16 minis to be exact. I love their logo, “Life Needs Frosting.” I had already paid for them and was holding my box grinning from ear to ear waiting on Chip to finish up getting gas and taking a potty break. I got a lot of funny looks and wasn’t sure why, but they were probably wondering why this “old woman” per my daughter’s description of me, was standing there holding a box grinning like a bird fed cat. Cinnabons are not on the safe list of foods for people who are trying to avoid foods that are known to be “inflammatory” but a Cinnabon is worth a little extra morning stiffness. Cinnabons are one of those rare treats where we live and you have to enjoy them when you get the chance. They were warm and delicious. We only ate a couple of them that night, but Chip heated them and had them for breakfast the next morning. I was glad to not have the temptation. I bet you are now craving Cinnabons…mmmm me too!
I was looking for boondocking opportunities on the webpages I mentioned while Chip drove. There are a lot of other places to look for free camping as well. One of them, which we did not elect to do because there is a cost to obtain the information, is called Harvest Host. They have done what I call the “leg work” to create a list of wineries, breweries, distilleries, farms, and attractions that invite RVers to stay in 873+ stunning camping sites. We may consider using them on our next cross-country adventure, as they have some neat places to stay, people like you and I who have agreed to “host” someone in their yard or on their property. The cost is 79.00 annually which may seem a bit pricey, but the cost of camping sites these days has drastically increased with the rise in people purchasing campers. So if you obtained this membership, it would pay for itself easily. I was just looking for completely free camping on this trip and not necessarily at unique venues since we would be going to be early and up and gone before we would even care what the view was for the most part. We just wanted to feel safe.
One of the places that I saw in the Harvest Host was in Iowa on a farm and you were welcome to pull up in between some of their grain bins and set up camp for the night. They even would offer a hosepipe to get fresh water and would say you were welcome to drain your grey-water tank if you needed to. Some of the others I read seemed the “host” families were really into “hosting” and made friends with the people who stopped, gave them fresh vegetables from their garden and one even gave homemade apple butter to some boondockers who stopped at their farm. Now, that is my kind of people. I do think it would be neat to meet people along the way because if you know me you know I do not meet a stranger.
Their free camping guide below is where I obtained the cute, catchy names of camping locations. Boondocking we have of course already talked about. The others that you will see me refer to are Wallydocking and Blacktop Boondocking. https://rv.harvesthosts.com/ultimateguidefreervcamping
We decided to not get too far off track for the night as some of the best boondocking opportunities that I could see from my free webpages would have been miles out of the way so we elected to stay in the Walmart parking lot in Denison, Iowa. We have of course, like many of you, have seen trucks and campers in Walmart parking lots, but never had experienced what it was like to be “one of those” campers. Wallydocking I can honestly say wasn’t that bad. This Walmart in Dayton, Ohio, was open all night, so we strategically thought about our camping spot. It was dark and almost abandoned-looking by the garden center, but honestly, that scared me a little and I told Chip I would be more comfortable if we could sleep under a light in the lot because if someone was going to mess with us, I wanted others to be able to see them too. The light was no brighter inside the camper than a full moon so it wasn’t bad at all. The noise wasn’t bad either. We both slept like babies.
Join us on day 3 for the best part of our journey. We drove hard to get to our next destination, you will not want to miss this one for sure.
This story is not about our trip but just a story, because I like to tell stories.
So as you know I have RA, aka, Rheumatoid Arthritis. RA can be painful and definitely limiting, but it has never taken away my drive to be independent. Chip often gets frustrated at me for not asking for help. Just last night I was trying to put an air vent filter up on a shelf, that was obviously out of my reach, but I was bound and determined to do it myself. I could sense someone standing behind me and knew it was Chip waiting for me to give up. Which seems ridiculous because I rarely do. I started laughing before I even turned around because I knew he was there. When I turned, there he was holding his phone out videoing me. I told him to go away and went back to my task at hand, which this time I did get it in place. He, of course, missed that on the video. It truly does drive him absolutely crazy that I just don’t ask him to do things for me.
We love anything to do with the water and Chip and Bailey had kayaks but I never had one. Now don’t feel sorry for me because that is where the Princess comes in. Chip bought this really nice kayak/canoe combo thing, he calls it a battleship. I think technically it is called a nucanoe. It is made for two people, and it is very comfortable. We have taken it to the coast, river and lake. We, meaning Chip, but I am always tagging along, the Princess. I gave myself that title when I rode at the front of the nucanoe never doing anything but riding, like a Princess. He did let me paddle once, in the beginning. Though I had canoed many years ago, and I am talking many, like in girl scouts at Camp Shawnee in the early 80’s. But anyway he told me how to paddle, as if I didn’t know how, but I think he was more concerned that he wanted me to paddle in sync with him. I really did try, but my timing seemed to be off and after hitting his paddle more than once, he told me to just enjoy the ride. I offered to help paddle many times after that, but he always told me no he had it. At first, I thought he was afraid I would hurt myself, or at least flare a joint up, so he always did it himself, with me the Princess setting up front. But I really think he knew I would never get my timing down with his and gave up on me.
Princess Kathy in the Battleship
Fast forward, wherever we went Bailey always had her kayak with us, and she seemed to be able to just take off and fly around the lake. Chip said it was because ours was big and heavy like a battleship and hers was low to the water, light weight and could go faster. Well, I wanted to kayak on my own but never had the chance as Chip was afraid I wouldn’t be able to do it. And honestly there was a part of me that thought the same, so I just enjoyed being along for the ride with a small part of me longing to do it on my own.
On a recent camping trip to Lake Reidsville, I finally got the chance. Chip and Chip, yes two Chips, go figure, had gone out on the nucanoe fishing, so I took Bailey’s kayak and tried it for myself. I was so proud of myself. Not only was it fun but I honestly had no pain later in my shoulders or wrist, which I usually do when I have over done it. So that is when it began, my love for kayaking.
Since then, I was able to try out my skill on the river, well not a rip-roaring river, which honestly I think I would rather be a princess on, but the Smith River which was just perfect for me. I love tubing, and when I say love tubing, I truly do but on the last 3 tubing trips I have gone on I had severe leg cramps and thank goodness my King Chip was riding along in his nucanoe and rescued me. Every time there would be a tubing trip, Chip would shake his head and ask “why?” and he would remind me of the outcome of all previous trips. I would assure him, not this time, I ate bananas and I would be okay, but unfortunately on my last time in a tube, it was one of the worst ever and my cramps brought me to tears as it took several people to get me out of the water and into Chip’s boat. Even then I had to stand flat, while two dear friends, Pam and cousin John, he is not really a cousin, but we have made him an honorary one, rubbed my legs and I drank Gatorade courtesy of a real cousin, Joe. I decided then my tubing days may be over. I say, “maybe” because I am not giving up hope. But on the next tubing trip I was excited to try out my skills on the river. It was so much fun and I was hooked. I was able to ride along beside of the “tubers” and talk as well as ride along a fellow kayaker, Kristin.
There was only one downfall of kayaking for me. Well, you see when you have RA it has to play a part in everything, no matter how hard you try to be normal and it unfortunately has given me bent bony fingers.
I have this small sore that started as a terrible blister from my river kayaking trip. It is the way I hold my paddle and though I have tried other ways to hold it, I just don’t feel as comfortable as I do holding it “the way I hold it”. Chip said I may have to get gloves, but I definitely think I will resist that. It would definitely draw attention to my hands if I had to kayak in gloves, and I am not talking about while I am kayaking but later when I have brown arms and white hands. I tan super easy so it would definitely be obvious even after an hour on the water. Back to the blister. This blister has never healed, and that was well over 5 weeks ago. It looked terrible at one time and with my job in health care I had to keep it covered and I can assure you there was no band aid that lasted on a knuckle and not just a knuckle but that particular knuckle is where I pull my pants up and down and the band-aid inevitably would get pulled loose. There is nothing worse than a band aid that won’t stay stuck on one end. The sore is better and I can at least go without a flapping lose band-aid.
My friend Sarah recently told me when I talk, I am like a lazy Susan, I always have spin off stories. So to get back on the topic, after falling in love with being in a kayak on my own, I had a task which was to find my own kayak. I thought I really wanted to get one with feet paddles, and some day I still may, but not unless I catch one that is a really good bargain. They cost way too much. But it would be perfect because if my shoulder hurt I could use my legs to paddle, plus it would be a wonderful exercise. But anyway, I could not find the perfect one for me. It needed to be just like Bailey’s as her is the perfect length and just “fits me.”
We recently went to Greensboro shopping and of course as usual had to check out kayaks at one of the hunting stores Chip loves. The store had a nice selection of kayaks, nice ones too, but there were none that “fit me.” So I came up with a brilliant idea. I told Bailey I could have her kayak, and she could get her a new one. Well didn’t that just work out perfect when she admitted she never liked her kayak anyway. Now was she just saying that to make me feel better because she knew I really wanted hers or did she say that because she really wanted a new one. Either way it doesn’t matter because in the end she got a new kayak and better, yet I got hers. I told her it could be her Christmas. She said,”now wait a minute, let me see if I understand this correctly. You took my kayak and told me I could get a new one and now it is my Christmas?” Well, I thought it seemed like a good idea, that way I wouldn’t have to spend money at Christmas. I am always trying to save a buck.
Today, she got to try it out, as we had to go to the lake to work on something and the new kayak got to go too. It wasn’t even her idea. Her dad was the one who was excited about trying it out and couldn’t wait until spring. It appears they both like how it handled, the stability of it and all those other things I heard them talking about. I am not sure how important those things are, it floated and I got my own kayak, what else could be more important.
So we are all set for the spring and a kayak trip. I have this sneaky feeling though Chip will be on the look out for him a smaller kayak too, since he doesn’t have to paddle the Princess around.
Day 1: Leaving Pelham, NC
Our first stop was to go by Bailey’s work and tell her good-bye, again, on our way out of town. We thought she might be embarrassed with her parents looking like gypsies, as we pulled up, loaded to the max. She was excited for us, and it definitely made the trip easier with her being home to make sure things were secure, the dogs, chickens and plants were cared for and the piles of mail and newspapers were picked up every day. Just Bailey and her Glock 43, which she wouldn’t mind using if she needed to, and the dogs were at home while we were gone. I knew she was well-trained for defense since she had passed the state BLET (Basic Law Enforcement Training), and would be fine at home without us, but as a mom, I still worried. We like many, did not publicly share our trip while we were “on the road” and are going to share our journey with you now. It will take me weeks to share it all, so I hope you enjoy my recount of the trip over the next few weeks as I share some of the many things that made this a trip to remember.
We left Danville and traveled through Virginia, West Virginia and Ohio. When we left Danville it was hot! As we went through lovers’ leap and the Meadows of Dan it was around 1:45 pm and the temperature dropped to 69 degrees. I thought, “Oh Lord, Chip was right, we have barely changed our altitude and it was already getting colder than I had really prepared for.” I sent Bailey a snapshot of the screen showing the temperature, and she too said, “I hope you took enough warm clothes.”
Instead of it getting cooler, the further we went the hotter it got, at 4:51 pm in West Virginia it was 97 degrees, and I was considering going back to the Meadows of Dan and spend our time. I love warm weather but I love fall camping with cool nights sitting by the campfire and sleeping with the windows open. We thought we were going to listen to a book on a CD, but we quickly discovered we were talking more than listening, so we turned it off and surprisingly to us we never turned it back on. I say surprisingly as we both love to listen to books on a CD and I had packed a couple of perfect ones since we were going to be on the road for so long. We talked about it later and realized we only listened to the radio, probably no more than 15 minutes the entire journey and that was as we were leaving town. We truly enjoyed all the scenery as we laughed and talked. I will share specific pictures and scenery ongoing that support the story. It would be easy to say that I am interesting to travel with. Just ask Chip and Bailey. I easily get excited about things and have scared both of them more than once with an exclamation from my mouth. I told Bailey I might need to duck tape my mouth as to not startle Chip when I saw something amazing, she laughed and agreed. I entertain myself and those around me whether they like it or not in the car, such as when rounding sharp curves I may just make weird noises as if the wheels were screeching, or when going through long tunnels I see if I can hum all the way through. I am the “I think I can, I think I can” when going up steep hills. Chip told me before we even left for our journey that there could be no “weird noises” in the truck, of course, I had no clue what he was talking about.
I also entertain myself on all of our long-distance trips by marking off the states I see on license plates. So, before we left town I printed off a map of the United States and packed a highlighter. I also like to track where we are on maps so if we passed a visitor center as we entered a state, we stopped and got a map. There were times I had multiple maps on my lap because I would have the current state open and one looking at where we were going to be in the next state. I will update you on my success or lack of with finding license plates of all the states.
I also had fun looking at other campers. You can see in some of our pictures I was fascinated with campers even smaller than ours. Bailey had mentioned getting her own camper, one small enough she can pull, so when I saw cute little campers I took pictures and sent them to her. She is not interested in one quite as small as the pictures I sent her, she said her camper had to at least have a bathroom. I agree with her one hundred percent. Years ago Chip and I camped to Maine and back, in a tent. I will have to tell you all about that trip someday down the road. Though I loved tent camping and it was one of the most memorable trips of our lifetime, the need for a bathroom during the night would not work for me in a tent these days at all, it is called age.
One of the things we have noticed in the couple of years we have had our truck camper is that on the east coast truck campers were far and few in-between. When we go camping with our friends, our truck camper is very tiny compared to their huge, and I mean huge, campers they have. I am pretty sure we could put our camper in their living room. I have attached a picture of a recent camping trip with some friends, so you can see the comparison. I hope they don’t mind me bragging on their camper. Though large campers are very nice, we could not have done this journey, our way, with that type of camper.
As Chip planned our trip, he told me truck campers were popular out West and I would see more on the road the further we went West. I was ready, when I saw my first truck camper I marked it on my map page, so I could keep up with how many truck campers I would see. You will have to check back in to get my results. I wondered when other truck campers passed us if they were as excited to see us as I was to see them. When I would see a truck camper I was ready with a wave, you know like Harley riders and jeep owners, but no one seemed to have a “truck camper” wave back for us. I guess in the end they were not counting campers like I was.
I learned quickly that the tunnels in Virginia were just a bit longer than my hum would last, but I had fun trying. And we went through several, so I had several chances to practice. I never hummed all the way to the end, probably because Chip would make me laugh. I usually try to hold my breath from beginning to end of the tunnel and to show that I am not breathing I just hum out. He reminded me more than once that weird noises were not allowed in the truck.
Trust me, there were noises, not weird ones, but entertaining ones, as went around sharp curves, and boy through some of those mountain roads there were a lot of sharp curves. We did like how West Virginia had such descriptive road signs, “Bump” and “dip.” A bump is a rise in the pavement whereas a dip is a low spot in the pavement as if you didn’t know that. Now in a car that sign may not mean a lot, but I can assure you in our truck camper we liked to know if there was a bump or a dip, as it was important to let off the accelerator. The truck still made weird noises when we “bumped”, well okay maybe it was not the truck but the passenger that made exaggerated weird noises, but it was a pretty big bump and warranted a noise or two.
Random pictures in Virginia that I thought were interesting and beautiful.
Of course, you cannot travel into other states without taking the typical, “Welcome” state sign. Unless of course you miss the “welcome” sign and have to catch the “come back soon” state sign. Still not sure how I missed the welcome to Ohio sign.
Leaving West Virginia we entered into Ohio. We definitely decided the only thing we saw through Ohio was a lot of corn. I honestly can say I have never seen so much corn in my life. I am pretty sure I had nightmares about corn, I just don’t remember most of my dreams, so I cannot say for sure. I will not bore you with all of my field pictures but wanted to share some, as the crops were so amazing. There were cornfields and soybean fields as far as the eye can see. I thought they were beautiful because you could see how the rows were so perfect. It was hard to capture it on camera, running 70 miles an hour. We had always thought the fields in eastern North Carolina were huge. That was until we hit Ohio, Indiana, Iowa, and Illinois. These were in Ohio, they were even bigger and better in the “I” states. Those pictures will be later.
We like to be spontaneous in our journeys. That is one of the reasons a truck camper works so well for us. It is a lot easier to immediately stop a truck camper to make a quick turn than it would be with a huge camper following us down the highway, There were a lot of times that we would see things that we would make a quick turn around and go back. There were also plenty of times that Chip told me we would never get where we were going if we kept turning around so I became more selective in my requests as we traveled.
In Ohio, we finally saw something other than corn. We saw a sign for the Bob Evans Farm in Rio Grande, Ohio. We knew Bob Evans was a restaurant but we were curious about the “farm” and since it was getting near dinner time, we thought we would check it out. We had not planned on eating out and had food in the camper we were going to prepare once we found our camping spot for the evening, but we knew we would not get the opportunity to visit Bob Evans original farm again so we decided it was worth checking out. Everything we did on this journey I would “google” it and learn about it. Whether it was a memorial highway sign, a historical marker or a tourist attraction, if I saw it and Chip didn’t know what it was (he knows just about everything) then I looked it up and learned about it. What I learned about Bob Evans was he had a small diner back in 1948, and he had a hard time finding what he thought was good sausage. So he started making his own. His diner started off with twelve stools. The restaurant grew of course and the one we ate at could hold 134 people. And as we all know there are Bob Evans restaurants all over, more than 500 to be exact. The restaurant we ate had several historical markers, trails and even camping at special events. They would have a big festival coming up in October that looked like an amazing event, if you lived in the area, though I would not drive back there just for that. There was an adorable homemade tiny camper in the parking lot that I had to take a picture of as we left. I sure wish I could have seen the inside. They had all kinds of toys attached to the tops and sides. They definitely looked like they were on the road for an adventure.
There were a lot of things I saw along the way that Chip would not let me take a picture of. We stopped at a rest area, and I saw a car with the trunk open and all their luggage spread out carelessly on the pavement. I thought about how sad they must have a flat tire. As we approached them, we noted the people in and around the car were police officers and the car’s occupants were handcuffed and quietly sitting on the bench. We went to the road to walk instead of the sidewalk obviously and tried not to look, not too much anyway. On the way out of the bathroom, I had my phone out, and Chip said: “what are you doing.” I said I wanted to take a picture, he very seriously said Kathy put the phone away and come on, “DO NOT TAKE A PICTURE”, in his daddy tone, I knew he meant it. Too bad, though, because I would have been able to share my picture here, minus the car’s occupants of course. I really did think they had a flat tire. I bet they wish that a flat tire was their problem that day.
Our first night on the road we stayed in a Cabelas parking lot in Centerville, Ohio. We already knew Cabelas was a boondocking friendly place to stay the night. There are a lot of great web pages to help identify camping places. Some are listed as free, state parks, even county parks, which Walmart allowed parking and which ones did not. These sites were very helpful in our journey. Our two favorite sites were https://www.campendium.com/ and https://freecampsites. We found some great places to camp from each of these sites, as well as where we could dump our tanks and refill with fresh water. Some of the dumpsites cost, but most were free.
This was our first time sleeping in a Cabelas parking lot. There was a sign that directed trucks and RV’s to the far side of the building, and trying to follow the rules, we did ride over to that side and looked around, but it just seemed more isolated than we liked. We elected to stay in a far corner of the parking lot under a light. The light was no brighter inside the camper than a full moon so it wasn’t bad at all. The noise wasn’t bad either. We both slept like babies. We had read a lot of forums about sleeping in the Cabelas parking lot and though it is “free” sometimes the stay may cost you hundreds of dollars. This was not the case with us as we were up and traveling before they even opened, so no expensive receipts for us, not this trip anyway, we have had our fair share of receipts from Cabelas, though. Chip has a Cabelas credit card. I have a Marshalls credit card. I guess you can tell what our favorite stores might just be.
An appropriate sign I saw at Bob Evans that fits Chip and me perfectly. I did not buy it because I am a tightwad but took a picture to share.
You have always heard a picture is worth a thousand words, but to me, the story that goes with it makes it worth a lot more. I hope you have enjoyed Day 1 of our journey through our pictures and story.
We will see you soon at breakfast on day two.
In late February 2019, early March, Chip went to the doctor after a week of severe pain in his right side that we thought maybe his gallbladder or appendix. The doctor told us those organs looked fine, however, there was a huge mass in his kidney that was of concern and immediately set up an appointment for a scan at the imaging center. The word mass, of course, was enough to set off the panic alarm, but we were optimistic and prayed that it was nothing to it. By the time the scan was completed, read, and a follow-up appointment was made it was mid-March. We went to a urologist in Danville who informed us Chip had kidney cancer and his right kidney needed to be removed. He recommended that we go to Duke to see a specialist, an Oncology Urologist. We met an amazing young doctor, he was younger than us, so we can call him young, who told us the same thing, the right kidney needs to be removed. He told us there may be some lymph node involvement based on what he was seeing, but he would not know for sure until he was performing the surgery. Additional cancer care would be determined after the kidney was removed and tested.
Chip asked that I keep all of this private, and I did. We did not even tell our immediate family until after the procedure was done. All along we, of course, we’re praying that everything would go well, which it did. Many of you prayed when I posted on FB prayers for a dear friend, that dear friend was my best friend, Chip, so thank you for those prayers. Chip had his right kidney removed in May and it was cancer, but no lymph node involvement. The doctor felt that they were able to get everything and there would be no need for additional cancer care at that time. Chip would go back in September for blood-work and again in December for a scan to assure there was no further sign of cancer. Septembers blood-work was what we expected, his kidney functions were out of whack because one kidney was trying to do the work of two. It may take a couple of years for this to improve.
Our summer was different as we were not able to go to the lake, beach or camping, as Chip had a lot of restrictions on what he could not do related to lifting and such. It took a couple of months for him to get his strength back and feel normal again. We canceled all of our trips, some that were planned the summer before, but enjoyed being at home and praising God that the cancer was caught so early, which from our understanding was rare, as it usually went undetected. Thank God Chip had a pain in his side, besides me, that he actually was concerned enough about that he went to the doctor. This was the first time in our 32 years together that he had been to the doctor. That in itself tells me there was divine intervention.
What we were reminded with this diagnosis was life is precious and none of us are promised tomorrow. We tried not to think about, “what if”, but we both did. I thought about how I could not live without him, and he thought about what he could do to make my life easier if he was not here. We thank God that for now, we don’t have to worry about that, that we know of. I couldn’t help but think of my time with hospice and all the many families I worked with that were my age or even younger, that had traveled this same journey with a different outcome.
Like most, we have always talked about what we were going to do when we retire. Our dream had been to truck camp our way through every state, except Hawaii, as that may not be cost-effective to get our camper there. After this scare, being reminded tomorrow may not come, we started talking about trying to make our dream happen, in small pieces, until we had camped through every state with our truck camper.
We started planning our first trip. I don’t think Chip missed a night that he was not on the computer planning our journey. I was fortunate enough that for the first time in my career, I was in a job that I could take extended time off. Chip spent extra time getting his job “ahead” in everything and had a co-worker cover him on the week-to-week things that might come up. Chip would be able to talk to loggers and land-owners as needed on the phone while we were on the road.
We packed for weeks, checked things off the list, and were ready to hit the road. I, of course, had all my clothes completely packed and in the camper two weeks before we even left. Chip, of course, said if I didn’t need those clothes for two weeks then surely I had too many clothes in my closet at home. Of course, the clothes that were packed were not my everyday clothes, they consisted of hiking pants and t-shirts. I love to dress down and was definitely looking forward to no dress clothes, curling irons or other necessities of my work life. I was going light and simple. Though I thought he was crazy, Chip told me I needed to pack for winter as well as the higher altitudes weather was unpredictable, and we needed to be prepared for anything. I did pack at the last minute a pair of gloves, my winter coat, a head-wrap, and a scarf. Surely, I would not need these things as I packed them on a day it was above 90 degrees, but I did pack them, just in case. I definitely did not want to be told: “I told you so.”
We had no set destination, we just knew where we wanted to go and what we wanted to see. Our list included South Dakota, North Dakota, Wyoming, and Montana. Chip planned out or direction going, and we would discuss things as we went.
Let me tell you about our camper and our plans to “boondock” our way to Yellowstone National Park. We purchased our truck camper several years ago after Bailey was away at college as we wanted to have some spontaneous weekend getaways without pulling our tag-along, which is a wee bit bigger than a truck camper, and therefore not easy to hook it up on a Friday afternoon and take off for a quick camping trip. We wanted something that was small since most of the time it would just be the two of us, but we also wanted something, so we would able to get off the beaten path. Truck campers have some advantages over other types of campers. The reason we like our truck camper is mainly that we can go anywhere in it. Places that most people would never consider taking any other type of camper, that is where we like to go. It is small, kind of like a tiny house on wheels, but has everything that we need. The other reason is we love to take our boat to the lake and coast which meant taking two vehicles, one to pull the camper and one to pull the boat. Or even worse was Chip would pull the camper to the lake on Thursday to set it up at the campground, come home, work all day on Friday and then come home, get me and Bailey, hook the boat up and go back to the lake. On Sunday, we luckily had family who would come spend the day with us and then pull one of our toys home. This was not quite as easy when going to the beach. We literally took our boat to Wilmington one weekend and were fortunate to leave it at a friend of a friend’s house. The following weekend we pulled our camper down to the KOA campground and spent the week. Toward the end of the week, my brother and his family came down, spent some time with us and pulled the boat home while we pulled the camper. Now with our truck camper, we can easily hook anything up, a boat or a trailer with our side-by-side and head anywhere we want to go. But there has been a hiccup with what we thought was a perfect solution. Chip quickly learned to not let me be the one to go park the camper pulling an empty boat trailer after unloading the boat. The first time I did it, I was so proud that I made it all the way from the boat landing, into the campground, through the roads, and into the campsite. I didn’t have to back-up at all so no chance of jack-knifing the trailer, so I had it made. There was a turn, pretty sharp into the site. Not thinking about the boat trailer having a huge crank handle, I turned to the left, sharp, but not sharp enough jackknife or anything. I parked the camper, so proud of myself and went back to see if the trailer was in a good spot for Chip to be able to unhook it and leave it parked. That is when I saw the crank was in the camper, and I mean literally in it. The crank handle where you tighten the boat on the trailer went into the back of the camper, through the tail light. It was stuck and I did not know what to do. Chip couldn’t get to the site fast enough with the boat. I met him at the water crying. I was so upset. Chip was not mad at me, though I am sure he was mad at himself for letting me do it. But we had a good weekend, and he had it completely repaired by the following weekend and you can’t even tell where it happened. It hurt my feelings more than it did the camper. I now am the one who drives the boat from the dock to the campsite while Chip parks the camper. This is a good decision on his part, that is until I take to boat dock out or something, which I pray never happens, but trust me I do worry that I won’t be able to dock it. I am so thankful for the weekends that Bailey or my brother is there when it is time to leave.
Here is a great article on the reasons people like truck campers, and you will see in the article pictures of the kind of places we like to go.
So now let’s talk about “boondocking.” Boondocking is also known as camping off the grid. It is simply camping without any hookups outside developed campgrounds. Our favorite place to boondock is on National Forest Land. You can usually find somewhere off the road to set up camp. The general rule of thumb is to park at least 100-feet away from any water source. We love to find a remote site somewhere off the beaten path. When you boondock you have to learn to be conscious of your water use and using lights as they will run down your battery. We have had no problems being able to camp comfortably for 2 days with no amenities, as our tanks hold plenty of freshwater and storage of what is used. When you are on the road, the batteries from the truck recharge the camper battery. There are a lot of places that allow you to dump your tanks (gray water is the sink and shower and black water is the toilet) and refill your freshwater tank. In our camper, while boondocking, we can watch tv and or at least watch a dvd, take showers, use the stove and fan. We cannot use the air-conditioner or microwave without the generator so you have to make sure where you are staying allows generators if you plan to camp when it is hot. The refrigerator runs off-gas as does the heater so you just have to make sure your propane gas tanks are full.
This is our model truck camper and some of the pictures are ours, but I am having a hard time getting some of the pictures to load so here are some generic ones so you can see spacing. I love that it is small and yet has everything we need. It is easy to keep clean. I made the bed every day n our trip, It is important to keep things put away and things “neat” or it would drive me crazy is such a small space.
Though our camper is perfect for two, Bailey has stayed with us plenty of times. The table folds down into the bench to make a bed. The three of us have spent plenty of hours at the table (it slides out) playing Yahtzee or putting together a jigsaw puzzle on a rainy evening. The bed is big enough that all three of us have comfortably watched a movie though I am not sure we could all sleep together as one of the three wiggles a lot in their sleep and I can assure you it is not me or Chip.
I did not take pictures of all the storage in the camper, but I can assure you we packed everything we needed for 15 days on the road and had room to spare. We took spare paper towels, toilet paper and such. The only items that needed to be replaced on the road were milk, bread, water, and ice for the cooler where we kept cold water in the backseat. Otherwise, we had everything we needed with us. I took enough clothes for the entire trip with plenty of extra, but Chip does not own enough clothes, so we had to wash clothes for him once during the trip. I think Santa will be bringing him more socks and underwear this year.
Chip and I tied up the loose ends with work, home, dogs and family and pulled out of our driveway, more excited than kids on Christmas morning, on Friday, September 13, 2019.
We graduated from college and moved away to Lumberton NC where we rented our first house. It was huge for us, with multiple bedrooms and bathrooms. We filled it up with our “stuff” from a one-bedroom one-bath apartment. Guess we were packed in there now that I think about it. It needed updating and the owners allowed us to do whatever improvements we wanted to do. We loved it and thought we were all grown up.
We both had our first “real” jobs. If I told you how much my annual salary was you would laugh, but to us we were rich.
I was determined to never let RA get me down and did everything I could to stay a step ahead of it. Medicine was still not working for me and I had good days and bad days.
On the days that were bad and, there were many of them, they were bad. I recall many days that I would wake up and my hands hurt so bad that I couldn’t even pull the cover-up on me without excruciating pain. Worse than that is that many times they hurt so bad that I could not even scratch my own nose. Can you imagine that? It was bad, but I was determined to not miss work and would do all I could to get dressed.
There were plenty of days that I could not do it on my own and Chip would have to put my pantyhose on me (yes, I thought if you dressed up you wore pantyhose) and he even mastered a ponytail many times. On these days, he was telling me to please stay home and not go to work, but not me, I was going to work.
I remember times that I could not turn the key on my ignition to crank the car but learned I could use a screwdriver as a lever and it worked better for my hands. My hands hurt to even grip the steering wheel but I knew from experience that I just had to keep going, and not give up. I know it sounds crazy but it is true, for me, that the more I did the better I felt.
I didn’t always win though as I remember several times that I ended up in Duke on IV steroids as my inflammation was so bad. But I was always blessed and bounced back quickly.
In this job, for the most part, we were assigned floors that we were responsible for the patients on those floors. My boss told me one day that there was a young girl on my floor that was there for RA and wanted to make sure I was comfortable seeing her. I told her that it didn’t bother me and it didn’t but what did bother me is that I didn’t tell her my story. See I have learned that everyone’s journey is different and the worst thing I can do is to tell someone who is in pain and suffering to not give in, keep fighting, no matter how bad you hurt, don’t stay in bed, but you see when someone looks at me, and I am saying those things they look at me and think “well you don’t hurt as bad as I do, or you aren’t as bad as I am.” So, see when someone has that mindset you can’t convince them otherwise. They must learn for themselves. I can only be an example of how even with RA you can go on, you can lead a normal life, and that even when you are hurting, there is the payoff for not giving in, for me anyway. Today that encounter would be a lot different, but you cannot go backward, only forward and that is why I have chosen to share my journey, so maybe, just maybe there is someone that can benefit from my story.
It was at this same job that I discovered that truth is more important than lying. I will never forget that day and can see the corridor as clear as day that I was on. I was limping, not hobbling, just a slight limp, in one of the long corridors of the hospital and as the employee who went to pass me said, “did you fall off your horse again” and I said, “what, I haven’t been on a horse in years.” She gave me a really strange look and said, “you told me last year that you had an accident with your horse.” It was then that it hit me I had lied to her a year before when she had asked me about limping and I had said I had fallen off a horse. I recall using this line many times before. This time though it made me think how stupid I looked getting caught in a lie and it was that day that I vowed to never lie again about my disability. Now I am not going to say I have always been forthright but I have not lied. You will see those stories later.
Welcome back… I know my next blog was going to be about my first job, however, my current job has had me super busy lately, with me being “out” of town more than “in”. It was on these overnight stays that I had revelations about the little things we often take for granted, so I decided to change-up my topic and share those with you.
Modify means to make partial or minor changes to (something), typically to improve it or to make it less extreme.
Modified has become my new favorite word. Let me explain. It all started with a commode. Yes, a commode. For many, that may seem weird, but let me share with you some of my experiences and it will make a little more sense.
Usually, in story writing one starts from the past and moves forward, today I am going to start with the present and reflect back.
So, like I said I have been in hotels a lot lately with my job. On this particular trip, I stayed in a hotel for 4-nights and though the room was nice, the commode was low, really low. I literally used the countertop to lower myself down and pull myself back up. I know, I really need to strengthen the muscles in my upper legs but who has time to exercise these days, not me. Okay, so I need to make time to exercise so I will put that on my to-do list.
After the first several uses I had gotten used to it and I was better at expecting the long dropdown. On the 3rd day, we had checked out of our rooms as we expected to finish our survey and return home. However, that did not work out as planned, so in the late afternoon, we were not able to find rooms to stay at our home away from home that week. Therefore, my boss made reservations for 3-rooms at a different hotel and when we arrived separately the woman working the counter said they have one king suite, one queen suite and a double modified. I like having 2-beds as I use one to put all my stuff on, so I took the double. She had called it a modified, I had no clue what that meant at the time, and it really didn’t matter as long as it had 2-beds, plus I knew my coworkers liked the “big” beds so I wanted them to get what they wanted as well.
Upon entering my room, it looked like any other double room to me. But then it hit me, the need to go to the bathroom that is. This is when I realized that “modified” must be the new friendly term for handicapped. Yes, my room was handicapped and the quick need to use the commode made me smile when it was “just my height.” It was what is known today as “comfort height.” I know that commodes are often called this because when we built our home 19 years ago we installed a comfort height toilet. And trust me when you have used one as long as I have, it is a big deal.
I had to laugh at myself that I was so excited to have a tall toilet. I am sure no one else would be so happy, but it is the little things in life that bring joy to my day. So of course, I then had to reflect back on my toilet experiences over the years. And yes, I have had plenty.
The first bad experience that I have never forgotten is using the handicapped bathroom at Value City back in the 80s. I came out of the handicapped bathroom and a woman was rude to me about a young person using a handicapped bathroom and didn’t I know those were for people who were handicapped and I should be ashamed of myself. I was so embarrassed I couldn’t even tell her that I really needed to use that bathroom. I will never forget how she made me feel.
It doesn’t bother me now and honestly look forward to the day that someone says something to me so I can say something back. I have rehearsed in my mind many responses. It won’t be a rude response but a thoughtful insight or maybe something funny that will make me laugh anyway. I can sometimes be witty. I have gotten plenty of “looks” but no comments from any of the lookers, so I haven’t been able to try out my creative responses. I wish I could say I just smile and walk away but I don’t, I usually try not to make eye contact and quickly wash and go. I guess some things still do bother me, a little anyway.
I quickly learned that even with a comfort height toilet, sometimes you still need a little more. After hip surgery, I really needed the arms to help me up and down. We had a bedside commode that we had used in the past so we brought it from the basement and placed it over our commode. Well without too much detail I learned that there was open space between the seat of the bedside commode and our commode and that can be a wet mess. Lesson learned is that they make an item called a splash guard for bedside commodes for a reason. On the bright side, I have been able to share this story with others to help them from making the same wet mistake. Plus, it gave them a little laugh as well. Laughter is such good medicine. And I don’t mind others laughing at me or with me, I do it myself all the time. My husband and daughter have more than once looked at me when I am so tickled that I can’t even tell them what is funny and said, “you are weird.” My thought is “tell me something I don’t know.”
Handicapped bathrooms are wonderful but not always practical. We went out-of-town once and the only room available was a handicapped room which worked fine for us as we were accustomed to handicapped living. However, some things “just don’t make sense in a handicapped bathroom.” This one and I have since then noted the same issue, had a flat roll-in shower, with a shower curtain that did not reach the floor. Our niece took a shower, and she called out to say there was a problem. And boy was there, we found the entire bathroom floor standing in water because it was flat and the water did not all run into the drain as quickly as it was coming out and because the curtain was too short even more water was in the bathroom. The worse part was that we used all the towels to dry the bathroom. We were a little worried that we wouldn’t be able to get enough towels for our group, and yes it was a small group as we don’t like to spend money and as usual, had more people staying in the room than we were supposed to have. You can pile kids just about anywhere and they don’t mind. In the end, we were able to tell the front desk the dilemma and get more. I think it was Ryan, my brother, who is quite a talker, that was able to get more, probably more than we had to begin with knowing him.
Several years ago, I had surgery, and we were going out-of-town to one of Bailey’s travel ball games, and they did not have a handicapped room available, so we had to “pack a raised toilet seat” and take with us. Bailey was embarrassed and wouldn’t carry it in for me go-figure. It was lightweight and packed easily into a white kitchen garbage bag. It worked great for me, but no one else wanted to sit on my seat so it was a little of a pain in the butt to have to take it on and off and more than once it was off when I would need it and need it quick. See I have this bad habit, my friends will agree with this, that I hold my water a long time, and then when it hits me I better be close to a commode. What is it about getting close to a commode that makes your body have “to go” even worse? Or is this just me…that might be an entirely different story so for now, I will end on a note of being happy that I am modified-in more ways than one.
Thanks for checking back in and continuing this journey with me as I reflect on my life living with rheumatoid arthritis.
High school was over and I enjoyed my summer like everyone else with the senior week trip to MB, cruising Riverside and endless Caswell County style “gatherings” making memories with my friends.
As the summer was coming to an end I was so excited about my new journey-college. I came from a family of six with parents who worked and had limited income and therefore college was an incredible opportunity for us. They worked endlessly and did without so we had every opportunity we could have, that they didn’t. I was going to college, me, college, I couldn’t have been more excited. I had applied to UNC-Greensboro and had been accepted. It wasn’t until later that I decided to go to NC State and in hindsight, I saw that I most likely would not have survived my freshman year without the support of my big brother, Jeff, who had already been at NCSU for a couple of years when I arrived. Divine intervention for sure.
Little things helped me survive college. One of the first was that my papa bought me an electric typewriter, a very nice one, for back then. Writing often hurt my hands so it helped me to be able to type. I was even able to help others out and would type their papers too.
For college, I was labeled as handicapped which was, of course, embarrassing to a teenager, but later realized I would not have been able to make it without the support of the handicap student support program at State. I was assigned to live on the 2nd floor of my high-rise dorm since I was not able to do steps. What a blessing when the elevator didn’t work, but I did have to endure mean looks when I rode the elevator and pushed the 2nd floor. You know the look, the “are you kidding me look.” Sometimes when I was hurting and needed to take the elevator I would look around and if no one was coming I would wait for the elevator. If someone walked up I would act as if I was tired of waiting and would take the steps simply because I hated the “looks.”
Because I was handicapped I could sign up for my classes ahead of time because I could not stand in the long lines they had back then. Now signing up for classes is online. The downfall of getting to sign up for classes early was that I got any of the classes that I wanted, which I thought was cool until I was in a class with all upperclassmen. I even had one of the students ask how I had gotten in as a freshman and I had to be quick on my feet and come up with “I guess someone dropped it in front of me” they didn’t question my response.
I was also able to opt-out of PE 100 which required the participants to run and do other things I could not do to pass. I took a handicap swimming class instead which I loved and made some special friends at the time with other handicapped kids, who were more handicapped than I was, or at least I thought. They may not have seen themselves as handicapped at all and may have been like me “labeled.” I ended up taking a lot of swimming classes which was fun and good for my arthritis as well.
College went well for a while with no one ever knowing I had RA. I did have a handicap parking pass which I did not use unless I was hurting badly. I learned that I had to get where I was going early to park so I could sneak out of my car when no one was coming by, it honestly was easier for me to walk in pain than the stress of someone “seeing me in handicap parking.”
However, with all the walking my hip gave out and I barely made it to the summer of 1986 so I could have my hip replaced. Every step and movement for months was excruciating but I never missed a class, even on cold rainy days. God was my rock and gave me the strength I needed to endure. Philippians 4:13 “I can do all things through Christ which strengtheneth me.” As soon as classes ended I went home with surgery already scheduled. I had my first of many surgeries in early May with only a few close friends knowing that I had it done. Summer wasn’t a lot of fun that year as I was on a walker for 6 weeks but my goal was to simply get well so I could go back to college on schedule. I returned to college semi-normal by August. Normal may not be the best word to use for me as most would say I have never been normal. With my new hip, I didn’t have a lot of pain but I did have my shoe built up (which again is rather embarrassing for a teenage girl) for a little while, as one leg was longer than the other. You know you have seen them, old folks shoes with a higher heel on one than the other. And yes it was “old people” shoes and now I am that person. Funny how our perspective on age has changed. Anyway, my leg being too long was actually comical as after surgery the doctor even questioned if he had put in the wrong size joint and after x-rays and determining it was muscular he said I had caused him to have to go home and drink that night. He really thought he had “messed up” per him. Eventually, that worked itself out and I was back better than before because I no longer had excruciating pain during walking. For those that know college campuses, it is a lot of walking so this was a blessing.
I did well for the rest of my college years. I met Chip, pronounced “Ccchhiipp”, my husband to be and did well to not let him know anything was wrong with me, physically that is, you can’t hide “not normal” otherwise. Honestly, I don’t even remember telling him that I had RA and if I did I am sure I was nonchalant about it. It wasn’t until we decided to get married that my parents shared with us both that my doctor had expressed concern that my last checkup revealed that my disease was rapidly progressing and at the rate, it was going, I very well may end up in a wheelchair in my 20s. They had not told me this information when the Doctor had told them. Chip was so sweet and supportive and said he didn’t care that he would push me around in a wheelchair. And boy he must have meant it as he has been with me through the good and bad every step of the way. You will hear more about that as we go along. We were married on December 19, 1987, during our Christmas break.
I worked throughout college on campus, first as a receptionist at handicap student services and then later in the Dean’s Office at the College of Veterinary Medicine. I then worked in the Admission Office at the College of Veterinary Medicine until I graduated. There I made some incredible friends and still have the flowers that Carmen, my direct supervisor, made for my wedding. I also learned that I hate to file because you cannot even begin to imagine how much paper there was to file for each person that applied to vet school. It was a huge pile that seemed to grow and never shrinks. To this day I attribute my hate of filing to that part of my vet school experience.
Prednisone, which is a steroid, was my lifeline and helped me function and lead a semi-normal life. I did not know then what I know now about the long term effects of steroid use. We will talk about that ongoing as well. Throughout college, I had to take a lot of prednisone, so instead of the freshman 15 (I don’t remember ever weighing or having scales) but my pictures revealed I must have put on the freshman 30. I blame it on the medicine but I also know that I was trying to be the perfect little housewife and made a lot of homemade biscuits and gravy. We loved our little apartment and the “home” we made for ourselves.
Life was great and things could only get better after graduation, or so I thought. See you next time as we talk about work……..
I remember when all I ever tried to do was keep “my secret” secret. After years of doing so, I remember the day that I made the conscious decision to not “lie” anymore to keep “my secret”, which comes much later in this journey.
I have decided to share “my secret” story in hopes that it helps someone else and maybe will bring a little smile into your life as well, as yes there has been a lot of humor in this journey. What I don’t want is anyone to ever feel sorry for me, that is not what this is about, and is often why I keep “my secret” secret. I have never felt sorry for myself and never ever plan on doing so. I am blessed beyond measure every day of my life, good and bad days included…so remember this is to share how and why I keep my positive attitude and how maybe, just maybe, someone can be helped by my experience.
You will have to come back often to travel on this journey with me. Some friends that do know about “my secret” have often told me, “you should write a book.” Since books have endings, and this journey will never have an end for me (until the end) so instead, I decided this would be a fun way to share my story. Plus “journaling” is good therapy and we all could use a little more therapy.
Let’s start by telling you “my secret.” RA-noted in the title of this blog is short for Rheumatoid Arthritis. A lot of people hear that and say “oh, man I got arthritis too.” And yes, I do sympathize with anyone that has pain, however, Rheumatoid is more than “just arthritis.” Rheumatoid Arthritis defined a chronic progressive disease, causing inflammation in the joints and resulting in painful deformity and immobility, especially in the fingers, wrists, feet, and ankles.
My RA journey began a long time ago, though me being 15 wasn’t really that long ago, was it? According to my daughter, I am ancient but in my mind, it wasn’t really that long ago that I was a teenager with not a care in the world…well maybe once you read my story you will see that I did have a “care” a care of what others thought, that now looking back made my life more difficult than it needed to be.
I honestly don’t recall all the details of when it started, but what I do remember is having pain that was not tolerable at times. We were raised at a time that people had gardens and I remember my parents telling me that they felt guilty for thinking I was lazy because I would have to sit on the ground and scoot my butt along the row, and oh how long those rows were, to be able to pick beans. I simply could not squat at all. I know my parents could have shared many stories here, but, for me, I guess it is good that my memory “isn’t as good as it used to be” or that time in my life was more painful than I want to remember.
I heard my mom share the story before when she knew it was time to take me to the doctor. My mom reminded me of a trip we took where after sitting for a long period of time that when we arrived I could not get out of the car and walk and it was then that one of my grandparents told her that she needed to take me to a doctor.
I honestly don’t remember going to the doctor at that time, though I know we did. But, what I do remember is having a “flare-up” and spending my 16th birthday in a hospital bed at Duke running tests and getting IV steroids. I had my “sweet 16” the weekend before so I guess it wasn’t too bad to be in the hospital. I remember my parents were eagerly awaiting test results, either MS or Rheumatoid, and they were so happy that it was Rheumatoid Arthritis. I did not understand that then, but I do now. This would be the first of many hospitalizations over the years for me. I am pretty sure they should have named a wing at Duke after me since between my parents and me and my husband, we have paid them enough to do so.
Then the journey began. I was in high school, the best years of my life. I did not allow RA to get in my way, but I can say it was often challenging.
My memories of high school-related to RA…
I was not able to participate in PE like my friends yet I did not want to be asked why I got to sit out of certain activities like I couldn’t do pull-ups, squats or run. I am sure there were others but I specifically remember those. I had a note from my rheumatologist that released me from PE however that would only spark questions from friends, so how do you handle that? You become creative. I had a supply of arm slings, ace bandages and such that I would wear during the semester of PE class. That way I was “injured” and did not have to explain why I wasn’t participating. If anyone gave it any thought, which I doubt they did, I would have seemed clumsy. I had “good stories” of what I had done to make me seem cool instead of the “sick” girl or “handicapped girl.” Yes, those things even back then, meant a lot to a teenager who just wanted to “fit it.”
Then came the tornado drills. For most, it was an excuse to get out of class even if only for a few minutes, but for me it was sheer panic. For me to get down on the floor in front of others and then trying to get back up was impossible, without looking awkward in my eyes, so I would not go to school that day (I worked in the office some so I knew when they were planned) or some other creative reason that I didn’t have to participate if I failed to know when they were.
There were lots of doctor visits for treatment over the years. The ones I remember the most were going to a doctor in Stoneville NC who was known to practice more holistic treatment and my parents, like most with a child with medical problems, would go to the ends of the earth to find a cure for their child. I remember being old enough to drive myself and would go monthly to get a B12 shot and see the doctor. Looking back, he had some great treatment ideas but to ask it of a 15- year-old in those days was too difficult. I could not eat red meat unless it was wild, i,e, deer meat, and rabbit, thank God we are country folks. I could eat anything that swam, flew or walked on two legs, but it could not be fried, no flour (back then I wasn’t aware of coconut flour or almond flour). So, what did you do when you went to McDonald’s with your friends? Exactly, so of course, this did not work for me. This was “back in the day” before you could buy “semi-healthy food” at fast-food restaurants. So my pain and discomfort continued and it wasn’t until later that I learned what long-term inflammation does to the body.
I did truly enjoy my high school years and have incredible memories of those years. I never let the pain or discomfort win and tried to be as normal as possible in the eyes of others, okay as normal as possible for me. I couldn’t play sports or even be in the band as my body would not allow me to do so, but I sang in chorus, participated in clubs and maintained good grades through it all. I also drove a school bus and worked after school at Rax Restaurant. I did learn though that sometimes no matter how hard you try, sometimes RA does win, physically. I recall specifically one time that I had to close at Rax and the manager made us clean, clean and clean some more. I ended up with a flare-up so bad that I had to be hospitalized. I never had to close again (not sure if any of my co-workers ever picked up on that one) though I did continue to work.
As hard as it may have been, I never let RA get me, even as a high school student, just trying my best to be normal.
Come back next time to go with me from high school to college…..