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!
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.
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).
Today I have one simple question, “Where did the energy go?” I would really like to know. Although I did need quite a few naps throughout my chores this weekend. However, I feel like someone pulled the plug or hid the batteries. I can barely open my eyes.
I’ve written about this topic a handful of times, but it is one that continues to haunt me. I’ll be on fire getting things done for a couple of hours and then have to take a recovery nap for 3-4 hours. It absolutely amazes/dumbfounds/confuses me. I feel that my body is still in recovery mood from becoming ill on Thursday night. I’ve also been battling stomach cramping this morning which has not been fun. I wonder if our bodies put us in hibernation mode so that we don’t feel the pain.
This weekend I took my prescription strength Vitamin D pill. I’m only supposed to take 1 per week so I can only imagine how much Vitamin D is jammed into that little pill. However, I think that it is having the opposite effect of what it is supposed to. Vitamin D is supposed to help with your energy and brain function, but both of mine have tanked.
I feel like a slug. This feeling is the part of Gastroparesis that I have the hardest time with. I can accept the pain, nausea, vomiting, etc. However, I can’t stand the feeling of knowing that things need to be done and I am rendered useless on my couch. My brain doesn’t want to cooperate enough to even watch some TV shows. As a result, I have been laying there falling in and out of sleep listening to a bird in the back yard sing and my dog snore. Both very pleasant sounds, but not as pleasant as actually getting work done, making my smoothie, reading a book, putting a glass in a dishwasher, or really doing anything at all.
I couldn’t stand laying there anymore so I did what I always do to try to break the spell. I set myself a goal to accomplish just 1 thing and then hope that the 1 thing will lead to more. If not, it will at least wear me out enough to go back to sleep and not think about being unproductive. So I decided to hobble over to my computer and type today’s blog.
Hopefully, it is turning out coherent because I think I see the GP Elves fluffing my pillow for me. Maybe they can drive me to my acupuncture appointment in hopes of it knocking this bad energy and cramping out of me!