The struggles of living life with complex regional pain syndrome and gastroparesis are always present on the good days and the not so good days. I’ve not written on my blog the past few weeks because sometimes the struggles try to take us under.
The past two months have been difficult for me. I can honestly say that there have been several times over the past two months that I thought I might be facing the end of life. On top of my CRPS and gastroparesis, during the past two months I’ve had a kidney stone, a urinary tract infection, fluid in my ears, diverticulitis, several migraines, and shingles. I realize my daily fight against CRPS and gastroparesis causes dehydration, sudden drops in blood sugar and blood pressure, and probably weakens my immune system. That’s the only link I can find between my recent health issues and my long-term chronic conditions.
I volunteered at a five-day camp in July and have basically been absent from life since. I’ve been out for doctor appointments and tests and to go to the store for food and supplies. On several occasions, I’ve just asked my family to pick up what I need.
I’ve spent most of my time the last few weeks in bed. Not feeling well takes its toll on the body. Not feeling well for weeks at a time really takes its toll. Have I slept all that time? No. I’ve done a lot of laying with my eyes closed and thinking.
Life isn’t easy with sickness. I’ve spent a lot of time thinking about how hard I have tried over the years to hide my illness. I thought I needed to be like others to fit in. Honestly, trying to hide my chronic conditions has done nothing except leave me exhausted and miserable. I’ve realized over the past few weeks that there is nothing wrong with being sick and there is nothing wrong with allowing others to know your sick. I’ve realized that I didn’t choose my chronic conditions and there’s no reason I should try to pretend they don’t exist. I’ve learned I need to embrace my life the way it is and enjoy what I can of it. I’ve also learned to let go because I can’t do it on my own. If someone wants to help, I need to let them. It’s not that I want help, it’s that I need it.
So, while I may have been absent from my blog and public view, I’ve been very much present in my life. I’m slowly learning to embrace my life as it is. I’m realizing that I need to be the person I am and quit trying to be what I think others want me to be.
It’s not my usual posting time and honestly I’m not sure why I’m blogging right now. There’s not a lot of other choices of things to do at 3am, so why not blog?
Some may be wondering, why 3 am? Well, because I’m awake, dealing with nausea, vomiting, and pain. Let’s be real… sleepless nights are not a rare thing for those of us with CRPS and/or gastroparesis. Today has been a rough day. For the past couple of weeks I’ve been more sick. I don’t know why, I just have. It seems as if everything I eat is just sitting in my stomach. As gross as it may sound, I see what I eat twenty-four hours earlier, being vomited up undigested. I’m not sure if it’s just my stomach being extra sluggish or what. I’m also having muscle spasms in the area around the gastric stimulator battery in my abdomen. I tried calling my GI motility doctor today. I left a message. Maybe they will call me back on Monday.
I’m also having some new joint related pain. It was my knee and ankle last Saturday. Today it’s my shoulder and wrist. I’m not sure what is going on with my joints. They feel like they are popping out of place. My primary care sent me for labs today to check for arthritis. It may just be my CRPS/RSD causing problems. I guess we’ll find out Monday when the lab results come back.
I realize this isn’t my normal blog post, but sometimes I guess it’s good to share the tough times. I’ve learned to put up a front and hide my trials from the world. As I told a friend from church this week, “Sometimes we feel like crawling into bed and just crying, but instead we put on our church face and tell everyone we are okay.” Well, the truth always finds you out and we all have good days and more challenging days. If we don’t share our challenges, people get the idea that we never have bad days. For me, rough days often out number the good, but no one sees me on those days. When I don’t feel good, I stay home.
There’s one thing that I can assure you of though, CRPS/RSD and gastroparesis can’t keep a good girl down. I refuse to give up and let chronic illnesses out do me. I know God is in control and He and I are going to get through this. We are a team and with Him, nothing is impossible. I may not be able to do many of the things I want to do because of pain and sickness, but that doesn’t mean I have to give up. I have hopes and dreams just like every one else. CRPS/RSD and gastroparesis may have changed my path in life, but they can’t steal my happiness.
I’ve been told that I’ve had stomach issues since I was a baby. I don’t remember being a baby, so I’ll take mom’s word on that. What I do know is that from my childhood years on, I’ve had a vomiting issue that I had no control over. All my life, I assumed I was either allergic to or had an intolerance of many foods. However, about two years ago I found out I have gastroparesis. Now I know why I vomit so much… my stomach doesn’t empty. August is gastroparesis awareness month, so throughout the month I’ll be posting about my experiences with gastroparesis. I’ve met several people with gastroparesis, so I’m not sure how rare it is, but here’s some info.
The past couple of days have been rough with my complex regional pain syndrome and gastroparesis. I’ve been more nauseated. I’ve vomited more than common. I’ve been in lots of pain. I’m exhausted. I’m not looking for pity… just stating the facts. When faced with these not so good days… which I’m forced to deal with on a weekly basis, I have to make a choice… do I lay in bed and cry because I feel miserable or do I find something to do to keep my mind busy. I’m not ashamed to admit that there are days I cry because I don’t feel like doing anything else. Some days I just sleep because I don’t have the energy to do anything else. However, some days I don’t feel like getting out of bed so I spend the day in bed with my tablet searching for inspiration. It never fails that Pinterest has something I’ve never seen before that brings a smile to my face.
Living with gastroparesis, I’m constantly having to defend my choice not to eat when I’m at church dinners, family picnics, and other outings where food is the main attraction. I know that if I eat certain foods, that more than likely I’m going to vomit. Many times, people want to know why I am not eating. I explain gastroparesis in as simple terms as possible and with as little detail as possible. While people are eating isn’t the best time to explain that I vomit nonstop when I eat the wrong foods or wrong amounts. While they are eating isn’t the best time for me to eat and vomit either. That makes for an award situation. However, some people persist and want to know more. So, I’ve grown tired of making the situation seem less complicated than it is. For a long time I blew my gastroparesis off as no bog deal, even though I knew it was. Now, when people persist, I give the details. They don’t usually ask twice. 😀 So, I explain it’s not that I don’t want to eat. When I eat fatty foods, fresh fruits and vegetables, meats, and food high in fiber, I vomit. Then I usually get a look of pity, which I completely despise, and am asked, “So what do you eat?” I found this picture on Pinterest today and while it may be referring to a gluten-free diet, I feel it portrays my gastroparesis diet perfectly. I don’t know from one day to the next what I can eat. A food that may be safe today may make me sick tomorrow. That is how my life works and I’ve adapted. I carry a roll of trash bags at all times because I never know what the day is going to hold.
This next sign really made me smile. I was diagnosed with complex regional pain syndrome when I was fifteen years old. I started having issues with gastroparesis in my early twenties, but wasn’t diagnosed until I was in my thirties. Many times, I’ve been told I’m too young to have the problems I’m having. For those who have told me that… this sign is for you. Unfortunately chronic illness does not discriminate based on age.
For those of you out there that are also facing chronic illness this one’s for you. While many people don’t understand what we are going through, we have to stick together and
hang in there. On bad days we need to reach out to each other and help each other along. On good days, we need to educate the world and bring awareness to invisible, rare, and chronic illnesses.
I clicked on my blog and realized it has been a month since I last posted. My last story was a sad one, but the month since then has been even harder and sadder. With a close relative having a brain bleed and a good friend suddenly passing from this life, it has been a stressful few weeks. I’m surviving though and I’m thankful for my tight-knit family and friends. We’ve supported each other through it all. God brought us to it and He is going to see us through it.
I did have some fun this past month though. My niece and I made a birthday cake for her sixth birthday. We made a Candy Land cake. We got the idea from Cookies, Cupcakes, and Cardio. I thought it turned out cute and it was very easy to make. Thanks Cookies, Cupcakes, and Cardio for the great YouTube video. We baked a sheet cake, put a layer of butter cream frosting on it, and topped it with candies. We followed the YouTube video, but my niece wanted us to add the people from the game board (Grandma Nut, King Candy, Mr. Plum, Queen Frosting, etc.), so we copied, laminated, and attached them to popsicle sticks to put them on the cake. We also made edible gingerbread man playing pieces by molding airheads candy using the actual plastic playing pieces from the game. We pressed the airheads on the playing pieces, cut away the excess candy, and peeled it loose. We ended up having to stick toothpicks in the playing pieces to hold them up because the airheads drooped when they got hot. If I had found a way to mold them out of the Wilton candy melts, they would have held up better, but I was short on time and didn’t get that figured out. Everyone loved the cake and my niece is already trying to pick out her birthday cake for May 2018. LOL
Today I took some time for myself and did some browsing on Pinterest. Self-care is important and I enjoy browsing Pinterest for decorating ideas, inspirational quotes, etc. I can’t afford to buy a lot of things, but I can make a lot of cheap decorations for my house. I must admit that the following sign made me stop and chuckle. Those of you living with chronic invisible illnesses can probably appreciate it. I hope no one takes the sign as me being rude or disrespectful. I promise I didn’t have any specific person in mind when I saw it. I don’t consider any of my friends stupid. I just saw it and found it funny because I often hear people talking about how good I look even though my big weight loss was caused by gastroparesis starving me. Being sick doesn’t necessarily make us look bad.
I’ll try to post more in the upcoming days about what life has been like the past few months with CRPS and Gastroparesis.
While the song may state “the sun shine’s bright in my Old Kentucky home,” the weather man is predicting cloudy skies and the possibility of rain Saturday May 6, as the 143rd Kentucky Derby is being run at Churchill Downs in Louisville, KY. I must admit, I’ve never been to the derby or paid much attention to it. The news describes the Run for the Roses as the greatest two minutes in sports history. While other people are focused on betting and buying the perfect hat to wear, the derby caught my attention this year for a different reason.
While scrolling through the news, I saw an article about Patch, a horse with one eye. According to the news, Patch is the fourth horse with one eye to run in the derby. Patch is described as being the underdog, but is quickly becoming a fan favorite.
While some might see a horse with one eye running in a race such as the derby as unimportant or useless, for me it’s worth cheering for. Living with chronic illnesses, there have been times in life that I’ve been viewed as “the underdog.” Since being diagnosed with complex regional pain syndrome in my right leg, several people have made comments to the effect that I should be thankful I’m not a horse because horses with bad legs are put down. I’ve never liked that comment. I may have a weak and painful leg and there are things in life that I can’t do because of it, but there are other things I can do. Just because Patch had inflammation and had to have an eye removed, it didn’t stop the horse from running. Patch may be considered disabled because Patch is lacking one eye and can’t see the way other horses do, but just as the news pointed out, that disability hasn’t sidelined the horse. Just because Patch lost an eye, trainers didn’t give up on the horse. In the same way, I’m thankful that I’ve not let pain, inflammation, and weakness cause me to give up my dreams of walking again someday and I’m thankful that my doctors and physical therapist haven’t given up on me either.
We live in a world where the underdog is often overlooked. I’m cheering for Patch because as a chronic illness warrior, I’m inspired by a horse with one eye running in the Kentucky Derby. I’m sure Patch, the trainer, and the rider had to make changes as they adapted to Patch only having one eye, but they haven’t given up. In my eyes, it would be wonderful if a horse with one eye won the derby, but whether Patch wins the race Saturday or not, Patch is a winner in my eyes. Go Patch! Go chronic illness warriors!