After a brief hiatus, most people would say that they took time to stop and smell the roses. I did do some of that but most of this week was spent preparing for 13.1 miles of insanity on Sunday. That’s right, I might have Gastroparesis but I’m still going to cross the finish line of a half marathon on Sunday!
I was always a runner growing up and it is in my blood. I was never extremely fast but have learned the insane ability to get over the mental hurdle of physical endurance and pain. There are times that I attribute growing up running long distance for my ability to remain positive amongst the pain of Gastroparesis. When you are running for 2-3 hour long practices, you definitely learn the ability to have mind over matter. There are times when this is easier said than done, but in general you have learned the odd skill of being able to torture yourself.
Last year I was able to complete 2 half marathons and was incredibly proud of myself. I even had a race shirt made that says “At Least I’m Faster Than My Stomach”! It is quite the conversation piece back amongst the slow pokes of the race. There are periods of each race where I must walk due to Gastroparesis, but I don’t mind because I am proud of myself for being out there. This are also the points in which other walkers ask me about my shirt and are in complete shock that I have a screwed up stomach and am still out there. It always brings some tears to my eyes and I doubt that there will ever be a time that it won’t. It means so much to be able to educate while taking on such a lofty goal.
My first half marathon was last year at this time. I was quite ill for the months leading up to it and was not able to train. I was worried and confused as to whether or not I should still attempt it. My wonderfully supportive boyfriend egged me on to give it a shot. (We are both competitive in a fun manner and I wasn’t about to see him with a medal and miss out on mine!) There were several times during the race that I thought I was going to have to drop out, but then I would hear a Johnny Cash song coming from a band along the route. He was one of my grandpa’s favorites. My grandpa had recently passed away and we were extremely close. I felt that all of the Johnny Cash songs were my grandpa also egging me on to keep putting one foot in front of the other and cross the finish line. (Really? What are the odds of 5 out of 6 bands playing Johnny Cash?)
This also got me thinking about Gastroparesis. We have to keep putting one foot in front of the other and keep moving. We have to keep fighting to find treatment options and cures. We have to keep putting one foot in front of the other to try to remain positive. We have to keep taking steps to try to maintain some “normalcy” in life. We have to keep moving both physically and mentally. It might seem like the race will never end, but one day it will. Hopefully it will in our lifetime!
So my 13.1 miles on Sunday will be dedicated to all of the GPers and all of you will be in my mind as I keep putting one foot in front of the other!
Okay, for these who have been following my Adventures with Gastroparesis will not be surprised when I say that I’m not shy about trying know things. I learned years ago (prior to Gastroparesis) to view everything in life as a life experience which will at minimum make you a more rounded individual. It will also give you more topics to discuss and provide you the ability to strike up a conversation with people from all different walks of life.
The pursuit of life experiences has had me intrigued by aqua aerobics for awhile now. Due to all of my running, my joints get sore easily and I have a knack for overdoing it. Then my mom started taking aqua aerobics for her physical therapy for a hip replacement (hi mom!) She was telling me about the classes which made me even more interested. They classes seemed to be really helping her and let’s be honest, they just sounded like fun. I don’t know how to swim, but I wasn’t going to let that stop me!
As it turned out, my gym offers aqua aerobics at one of their other locations nearby. It was time to see how Gastroparesis did with this adventure. I was optimistic because it was much less impact on the body but still got your juices flowing. As it turns out, one of my good friends has also been intrigued by aqua aerobics for a long time. This meant that I had a partner in crime and would help keep me accountable for going to class.
Today was our first class and it was a blast! We were at least 30 years younger than the majority of the class but all of the ladies were so nice. They also can run pretty fast through a pool! The class was just as I had hoped. My muscles feel like they have been used, the blood is flowing, and it gave me an energy boost. All of this came without the joint pain that usually accompanies such workouts and it was just plain FUN! When we were holding on to the side of the pool kicking our feet, I felt like I was a little kid until I realized we were going to be doing it for awhile.
If anyone has access to a pool, I would definitely recommend going and at least walking back and forth in it. It loosens up your muscles and makes you say: Take that GP!
Now if those pesky GP Elves wouldn’t have stolen my underwear out of my duffle bag for my return trip home!
PS…My swimsuit & belly cooperated for the majority of class! YEAH!
Anyone with Gastroparesis has been there. The time when you start to come out of a flair and you realize just how “funky” you are. (And I don’t mean funk in a good way, but in a smelly way!) You wonder…how…on…earth…have I become this stinky. What happened the last few days? Did the GP Elves throw me into a pile of used gym clothes? Did they spray me with “sweaty luxury” perfume? Is this smell coming from me or the dog? Can I pretend that it is the dog? Did Pig Pen have Gastroparesis? He sure exemplifies what we look and feel like at the end of a flair!
It is AWFUL! During a flair you have limited energy and there are certain things that just still have to be done. This means that you don’t want to spend precious energy getting a shower. You also know that if you attempt to get a shower that you might collapse from exhaustion at any moment. Then you not only have an issue with a Gastroparesis flair up but also the issue of a cracked open head. Hmmm…I wonder which is worse….hmmmm. Okay, staying on target. (The GPers out there, know just how difficult it is to stay on target at the end of a flair.)
Today, I FINALLY had enough energy to get a shower. Although there was not enough energy left to dry my hair, so into the ponytail it went. I think that I have somehow lost 5 pounds in pure “funk”. My skin is rejoicing the fact that it can breath again! You might think that I am exaggerating, but anyone with Gastroparesis will tell you that I am not. You quite literally wake up one morning and think “was that all a weird dream”? Did someone take over my life for a few days? It is one of the most bizarre experiences that you can have.
It was amazing that once I washed the Gastroparesis funk off of me how productive I was today. I was on a roll and smelling great! I’m anxiously awaiting my first aqua-aerobics class with a friend tomorrow and I’m sure she will thank me for not having a ring of filth surrounding me in the pool. Although I will make NO guarantees about my swimsuit and Gastroparesis belly combination!
No matter how much you think you have Gastroparesis beat, you never fully do. There will always be a setback that hits you. For me, it always seems to be when there is a large shift in the weather. It is so incredibly frustrating to be on a good path and then something completely out of your control throws a wrench into the whole scheme. It’s in these moments that I hate Gastroparesis the most. It’s in these moments that I struggle to stay positive and keep fighting. It’s in these moments that I have a hard time fending off the depression and self-doubt. Today has been one of those moments.
The weather had a giant shift yesterday which wreaked havoc on me and my Gastroparesis. I have been fatigued and this morning had extremely horrible stomach cramping. I stand by my acupuncture post from yesterday, because even though I faced this setback I noticed that my body is bouncing back faster than it did before the acupuncture treatments. It still doesn’t bounce back as quickly as I would like, but something is better than nothing.
This morning was not only filled with fatigue and severe stomach cramps but was also filled with self-doubt and depression. What is my point in life? Why was I changing my diet, taking supplements, blending my food, getting acupuncture just to remain sick? Why do I always have to get sick? Why don’t more people know about Gastroparesis? Why keep fighting it? Is the blog really helping anyone? Should I keep doing the blog? The list goes on and on and on. These moments are EXTREMELY difficult to pull yourself out of. Once the snowball starts rolling it takes a giant yeti to make it stop.
Somehow, someway I was able to get the snowball to stop. Maybe it’s because I had to force myself out of bed to get some work done.. Maybe it’s because my dog was insistent that I needed all the kisses she could give me. Maybe it’s because I saw an adorable photo of my friend’s baby in a safari hat. Maybe it’s because my amazingly calm and supportive boyfriend was saying all of the right things. Maybe it’s because I know I’m meant to make a difference for the Gastroparesis community. Whatever the reason was, I was able to slowly snap myself out of the funk today. I’m not fully out of it but still slowly getting there. I saw the image for today’s blog & I think it will be my new motto: Chin up buttercup!
Ever since I found the image, I’ve been telling myself this over and over. It seems to be working. I’ve thought of additional ideas that I can do to expand the blog to more than just my daily posting about life with Gastroparesis. I’ve thought of some possible ways to arm others with copies of the Advocacy Binder.
I’m excited about the future and hoping that you will be too. I’m hoping that you will like the changes coming soon to Adventures with Gastroparesis!
Never give up & keep your chin up! We will find a way to make our voices heard, just you wait & see!
As mentioned in previous posts, I will try almost anything in an attempt to feel better. Hands down, the best thing I have tried is acupuncture. (Gluten-Free is running a close second.) I was going twice a week to start and felt the benefits almost immediately. My reflux was lessening. My nausea was diminishing and I was developing more energy. I was also noticing a reduction in bloating. I would still become severely bloated but the bloating was not as painful.
Now I am going once per week and am still noticing a benefit from the acupuncture. I notice that I am actually hungry after a session. Hunger is something that doesn’t happen very often for me. I also feel more grounded and as if my head is in a better place not only for battling Gastroparesis but also for life in general.
My acupuncturist is wonderful. He really takes the time to get to know the issues that I have in order to formulate a treatment plan for me. He has also suggested some dietary changes that would work hand in hand with Chinese medicine and the healing process. Oddly, almost all of these recommendations matched what my nutritionist had told me. The acupuncturist also loves to hear feedback on how my body reacted over the week so that he can assess which treatment options are working best for me.
For anyone with Gastroparesis who would like to try acupuncture, I would say GO FOR IT! Make sure that you do your research and find a credible acupuncturist in your area. I would be skeptical if he/she did not ask several questions and really get to know your chief complaints or want feedback on how your body is reacting.
If you have been worried about the needles, do not! When I get an IV, I squirm like there is no tomorrow, try to curl in the fetal position, and turn ghostly white. However, I haven’t had an issue with the acupuncture needles at all. They are so tiny that you will barely feel them.
I am curious if others have tried acupuncture and what their reaction is? It seems that more and more GPers are giving it a shot.
Let me start out by saying that the photo above is false advertising. No one looks that good in a spin class. Sweat is dripping everywhere. It smells. People are grunting. If there is a pause in the music you hear people sucking wind. People’s bangs are sticking straight in the air because the people can’t handle having them on their forehead anymore and there is enough sweat to spike them straight into the air. Oh wait….that’s just me and I don’t care! I have Gastroparesis and am just happy to be there.
Okay, I’ll fess up. Several people are looking like a hot mess in spin class, but only I have the spiked bangs. I think that I might bring back the 80s headband. As I mentioned, I’m just happy to be there. Today I had A LOT of frustration to get out of my system. Frustration over how so many people are fighting Gastroparesis and in constant pain. Frustration over the lack of treatment options for Gastroparesis. Frustration over the lack of knowledge of Gastroparesis. Extreme frustration about how we receive this diagnosis and then basically told to “live with it” with no end in sight.
All of this was going through my head and the more frustrated I got, the faster I went. I was wishing that if I could pedal fast enough that a cure would magically appear for all of us. It is still absolutely mind boggling how in this day in age we are just left to the wayside to fend for ourselves and frequently treated by the medical profession as if we are a bother.
I know that there are A LOT of GPers struggling right now. My heart breaks when I read some of the posts about how debilitating Gastroparesis can be. About how the medical bills pile up. About how our lives have been ripped away from us and we have to sort out a Plan B. I wish that I could give everyone a big hug. I wish that I could pedal us a cure.
However I do know this. My Gastroparesis is mild compared to most (which in and of itself is mind boggling, because I know how bad I get.) This means I have more energy available to fight for us. A fight that I take extremely seriously. I promise all of the GPers having a bad day that I have so much fight in me that I am on a mission to make Gastroparesis a household name so that one day we can have better lives. Do NOT give up hope (I know this is MUCH easier said than done on some days). We are a strong group of people and we are determined to have our voices heard and make a change!
This entry is dedicated to Kristi Jewel. You are stronger than you know! 🙂
Who ever said, “there is no such thing as a good thing” was never prescribed 50,000IU of Vitamin D. For those of you who have not insanely researched Vitamin D, let’s just say that 50,000IU is considered a “super dose”. Let’s also stop and think about how large of a number 50,000 is. This is the new wave of prescription for those of us with a severe Vitamin D deficiency, take 50,000IU once per week for 12 weeks and then woohoo…your deficiency is cured!
However, Gastroparesis means that your stomach does not digest things properly and it takes a looooong time. So does anyone have a guess as to the solution for the following equation:
slower than a turtle in mud stomach + insane super dose of Vitamin D = ?
Did you guess, “One screwed up body”? Ding…ding…ding…we have a winner! I have been sleeping 12-14 hours per day since I took my super dose of Vitamin D. I also am having a difficult time staying awake for more than 3-4 hours at a time. I’m not a medical professional so I have no medical way of saying if these two items are directly related, but I can’t find another logical conclusion. I scoured the internet and only found a small handful of people with the same complaint in regards to these “super doses”.
I would say that I am the most in tune with my body than I have ever been in my life and I have a gut feeling that the super dose screwed me up. I always say that I have a gimpy gut that’s 99% accurate. It really is quite phenomenal. It seems logical to me that a smaller dosage spread over an even number of time would have a better result for me. This meant that last night was spent searching the internet for a good D3 supplement without fillers in a gluten-free, dairy-free casing. (No easy fete!) This also meant that I was scouring the internet for a coupon for the supplement that I found. (As mentioned before, Gastroparesis is not a cheap disorder to have and every little bit helps.)
So today I am going to do what almost every GPer before me has done. I’m going to adjust my treatment from what my doctor has given me. I wouldn’t recommend this to you. You should ALWAYS check with your doctor before changing your treatment plan, but unfortunately GPers live in a different reality. We do an insane amount of research and the knowledge that we have gained about our bodies is INSANE!
So now I know that the GP Elves weren’t slipping me sedatives but rather were in cohoots with my doctor for one “super dose” that I don’t think is super at all.
We have made it 1/3 of the way through Gluten-Free April so I felt that it was time to give everyone an update on how it is going. So far I have only had gluten 2 days this month! Both of which were minimal amounts: 1 English Muffin. For some reason, I gave in and had an English Muffin on 2 days. No binge gluten eating here!
I’ve found some really amazing recipes and gluten-free blogs which have been helpful in making Gluten-Free April successful. In particular, I found a great turkey meatloaf recipe and peppers and chicken recipe. I’ve also enjoyed chicken with gluten-free soy sauce and rice. During the day I still stick with my smoothies, but it is nice to have a delicious gluten-free dinner.
However, my body seems to be going into a hibernation period without gluten. I’m hoping that it is just a matter of my body adjusting and working all of the residual gluten out. Even though I can’t seem to ever have enough sleep, I think that once my body adjusts that i will feel a lot better. I have already noticed a reduction in the stomach cramping and bloating.
My additional goals for April have also been going well. I’ve only missed 1 night of my nightly prep work. It is so much more relaxing to go to bed knowing that my clothes are ironed and smoothies are made for the next day. I’ve also stuck to my 10 pm bedtime except for Wednesdays because I’m a sucker for the Wednesday night TV line-up.
As far as coffee is concerned, I am under 10 cups per week but need to work on reducing that further. Right now it appears that May is going to be “Caffeine-Free May”. (Consider yourselves warned!) All in all, I am really excited about continuing to reduce the unnecessary items going into my body. Prior to April, I had already eliminated almost all chemicals from my food and I stay far, far away from GMOs. I’m convinced to getting back to organic home-grown food is the best thing for the body.
It also feels great to exercise and sweat out additional toxins from my body. I’m hoping to start attending an aqua aerobics class on Saturday mornings with a friend. (Be prepared, because I’m sure that will turn into some interesting blog topics.) My mother recently has gone through several hip surgeries. (Yes, several. Due to complications but she is doing well now.) She was doing aqua aerobics as rehab and has inspired my friend and I to give it a try. (Hi Mom! I know you’re reading this!)
On a general whole for my April goals I would rate myself as a B+. I’m almost to an A level but still have a ways to go, but I’m pleased with the progress thus far in April.
Now if only the GP elves would stop sedating me into day long slumbers!
Take that Gastroparesis!
Guess who made it to spin class two nights in a row?!
I must confess that tonight I wasn’t completely motivated to go. On the way home I hit a rather large traffic jam and was beginning to feel a bit nauseous. Fortunately I had some time for a nap before spin class was scheduled to start. I also knew that I was meeting a very good friend there and really wanted to say hi. (Plus, she was making it to class at 8 months pregnant so it is a constant motivation that I can do this!)
I barely made it to class in time and within the first 5 minutes I was so glad that I did. I was spinning out all of my frustration with Gastroparesis and how it has been dictating my life. Then I began to think about how I was conquering it and that I wasn’t going to let Gastroparesis have the majority of my days. I was becoming stronger and stronger as the class went on. I was becoming more and more determined to show Gastroparesis whose boss and who was going to start reclaiming as much of her life as she can. I was pedaling as fast as I could away from those pesky GP Elves! (Seriously, I closed my eyes and pictured that at one point. When I opened them, my RPMs were the highest they were all class!)
Now I am exhausted, but so glad that I accomplished something two days in a row. There is a storm brewing outside that rivals that of the Wizard of Oz and I’m clicking my heels saying “There’s no place like pre-GP life, there’s no place like pre-GP life”. Although I don’t want to go back to pre-gastroparesis life. I want to continue living my life with a purpose and that purpose is to continue to educate and advocate for Gastroparesis. I couldn’t imagine life without all of my GPer friends. Life is so much more interesting with my fellow GPers and so much more fulfilling sharing a clear purpose with them!
Inevitably when you are sick (with Gastroparesis or any sickness), your time clock becomes completely inverted and screwed up. Then you look like the photo above and lay awake about laying awake. It becomes a viscous cycle and one that is hard to break.
With Gastroparesis it becomes particularly interesting. You know that the best way to feel better is to sleep. You could also say that the best way to feel better is to hibernate and you would be using a better description. You sleep for days and in the process lose days. You have no idea what day it is, what time and you begin to realize why retired people have no idea what day it is. Awhile back I had a good laugh about this with one of my friends who is home on leave with a newborn. We were chatting and neither one of us could figure out what day of the week it was without looking at one of our cell phones. I have become so bad at knowing the day of the week that my boyfriend makes a morning announcement, “Today is Tuesday. It isn’t a holiday and is a work day. You have acupuncture tomorrow not today.”
I’m not sure how much of this is due to Gastroparesis Brain Fog or how much of it is due to insomnia, but either way I become extremely stressed when I can’t get to sleep. Although, I’m not sure it should be called insomnia if it just so happens that you come out of hibernation at night time. Either way, it is hard to lay awake at night and not contemplate Gastroparesis and your day ahead. If you can’t get back to sleep, will you have enough energy to make it through the next day? If you can’t get to sleep, will you become ill again? If you can’t get to sleep, is it Gastroparesis or something else? The list goes on and on. Yet another loop.
However, this morning I am awake. Starting to feel refreshed and getting ready to tackle my day. I’m hoping to not overdo it today and knock out the last bit of this “mini-flair” (if there is such a thing).