Invisible Illness Awareness: 30 Things…
Invisible Illness Awareness Week runs from September 14 – 20. This list is intended to create awareness and understanding about Gastroparesis, an invisible illness that affects thousands of people of all ages.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with: Gastroparesis. My stomach is “paralyzed” and doesn’t digest food properly.
2. I was diagnosed with it in the year: 2004
3. I’ve had symptoms since: At least 2003, but I believe it was several years before that.
4. The biggest adjustment I’ve had to make is: Learning how to navigate social situations. Everything revolves around food – holidays, birthdays, weddings, meetings, simple get togethers. Not being able to eat means that you always feel at least a little bit like an outcast.
5. Most people assume: That I look fine, so I must feel fine.
6. The biggest misconception about my disease is: That I just get a stomach ache sometimes or simply have to follow a certain diet. Unfortunately even eating little more than baby food and fruit loops, I’m still sick every single day. It’s like having a stomach flu that never goes away.
7. A gadget I couldn’t live without is: It’s not a gadget, but the internet has been invaluable. It’s allowed me to interact with other Gastroparesis patients and do my own research.
8. The hardest part about mornings are: Knowing that as soon as I eat or drink, I won’t feel well.
9. The hardest part about nights are: They’re long and lonely when you don’t feel well.
10. Each day I take: Chewable vitamins, Boost/Ensure, probiotic, laxatives, and Iberogast, an herbal supplement from Germany. There really aren’t any effective medications for Gastroparesis.
11. Regarding alternative treatments: I’m a big believer that medicine doesn’t just equal drugs and highly encourage GPers to explore complimentary/alternative treatments. I have tried: acupuncture, massage, CST, supplements, herbs, iridology, chiropractics, etc. Aside from acupuncture and herbal supplements, most of these things didn’t helped much…but neither did traditional medicine.
12. If I had to choose between a visible or invisible illness I would choose: Hm. Well, I can almost always hide how I’m feeling, which is helpful in some situations. But on the downside, very few people understand the extent of this disease because I typically “look good.”
13. Regarding working and career: I feel like I’m five years behind. I’ve had to put that part of my life on hold for the most part.
14. People would be surprised to know: That I’m technically malnourished. I’m always told that I “look great” but looks are apparently deceiving.
15. The hardest thing to accept about my new reality has been: The stress it puts on those closest to me.
16. Something I never thought I could do with my illness that I did was: I try not to think in terms of “I can’t”…other than “I can’t eat that,” of course!
17. The commercials about my illness: There’s relatively little money to be made on GP patients, therefore there are no commercials, no big research studies, etc.
18. Something I really miss doing since I was diagnosed is: Having dinner with my husband.
19. It was really hard to have to give up: Birthday cake. I haven’t had one in five years!
20. A new hobby I have taken up since my diagnosis is: Yoga. It’s made a huge difference in my life.
21. If I could have one day of feeling normal again I would: Go on a date with my husband, eat a real meal, and not worry about whether or not we’d need to go right home afterward.
22. My illness has taught me: A lot! In general, I’m a far more positive person now than I used to be. I’ve also learned that I am physically and mentally stronger than I would’ve ever imagined.
23. One thing people say that gets under my skin is: “I wish I could have your problem so I could lose some weight!” It’s ridiculously ignorant and offensive.
24. But I love it when people: Ask intelligent questions about my illness because they are truly interested in learning more about it.
25. My favorite motto, scripture, quote that gets me through tough times is: “If you’re going through Hell, keep on going!”
26. When someone is diagnosed I’d like to tell them: Never, ever, ever give up. Be your own advocate in every sense. Do your own research. Try alternative treatments. Keep a positive mindset. It makes all the difference in your outcome…I’ve seen this repeatedly.
27. Something that has surprised me about living with an illness is: It’s actually made me a better person. I’m stronger, more compassionate, and more grateful now.
28. The nicest thing someone can do for me when I’m not feeling well is: Make me laugh.
29. I’m involved with Invisible Illness Week because: I want to spread awareness about Gastroparesis. It’s a very isolating disease, especially when you feel like nobody understands.
30. The fact that you read this list makes me feel: Grateful.
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10 Responses to “Invisible Illness Awareness: 30 Things…”
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[...] Crystal – http://gpadvocate.wordpress.com/2009/09/02/hello-world/ [...]
i really have to thank you for writing this. i’m 21 and i’ve had a 5 intestinal surgeries over the past 5 years. i was diagnosed with gastroparesis a few years ago, and this list brought me to tears. most of the things you’ve written are word for word my feelings, and it’s so wonderful to read someone elses experience. i’ve recently been looking into gastric pacing and am definitely planning on speaking to your surgeon at mayo. i’ve been there before for surgery as a pediatric patient and it really is such a wonderful place. i’m so glad you’re seeing some improvement from the pacemaker! i wish you all the best and i hope things keep improving. thank you again for posting your experience. it’s really a comfort to know you’re not alone.
Hi there my name is mandy and i also suffer from the horrendous condition gastroparesis.. Im 30yrs old and was diagnosed 3yrs ago.. Ive had 5 major operations to try and correct/improve my condition with no long term success.. I am going to see a top surgeon in glasgow to discuss the gastric pacemaker.. my everyday symptoms vary from mild to severe on any one day they include vomiting uncontrolably, severe stomach cramps, hairloss, terribly dry and sore skin, weightloss, taking vast amounts of medication, extreme tiredness, no energy and so on.. The hardest thing to deal with is outings and situations that involve food.. you dont realise how food domonates ones life and social life untill you experience the condition gastroparesis… there is soooo much more I could tell you all about the condition and the previous surgerys i have had to try and correct or reverse this condition i.e. I had my gallbladder removed, and 4 major operations at 3 different hospitals inwhich they tried to re-construct my whole stomach area… so i now no that im certainly not alone with this condition and that gives me great comfort.. my name is mandy mcguire I am 30yrs old and I live in Paisley which is in scotland hope to hear from anyone who is going through the same or similar circumstances to myself take care all and hopefully hear from someone soon… xxxxx
Hi Mandy. I’m so sorry that you’re struggling with gastroparesis as well. Would you be willing to share the surgeries that youve had? I’ve also had 5 and the last one left me with less than half a stomach, which still doesnt empty. Best of luck with the surgeon in Glasgow, I hope to hear back from you!
Mandy & Joanna -
Wow, I’m in awe of your stories. I cannot imagine what both of you ladies have been through with all of these surgeries. To be honest, I wasn’t aware that many patients had operations related to gastroparesis. If you’re comfortable, please share what types of operations you’ve had.
I will keep both of you in my thoughts.
Hugs,
Crystal
My first surgery was due to a blockage in my duodenum, not to GP, but since that first surgery which made a bypass of my intestines, i still havent been able to eat properly. I had another surgery to remove the blockage, one to taper or make smaller my duodenum (because both my duodenum and stomach were very stretched out that even if the path was clear) And my most recent surgery last summer, was a partial gastrectomy, which we’d hoped would leave a functional bit of stomach left, though that doesn’t seem to be the case.
Crystal – I’m looking into possibly seeing dr swain, and i was wondering how you went about with the pacemaker. I want to be able to kind of have a sure thing before i fly all the way out to MN. Were you able to speak to him about your case before you went there, or did you just make a consultation and go? I was also wondering if you could share anything about what the price of the surgery ended up being? I have GHI and i’m pretty sure they’ll cover a good amount once i’m in the hospital out of state, but that’s also a big consideration for me, as I feel awful that my family has payed so much these past few years.
You’re in my thoughts as well. Thanks!
Joanna –
First of all, you are one tough woman! You’ve been through so much and I really respect the fact that you’re still searching for an answer and refusing to give up. I truly believe that makes all the difference with this disease.
Regarding the pacemaker surgery, I actually didn’t start with Dr. Swain and I’m not sure that you can see him about it without first seeing one of the docs in the Motility Clinic. My doctor is Dr. Fox. I’ve also seen Dr. Kraichley. Both of them are part of the pacemaker program.
It’s my understanding that a GI/motility doc first determines that you’re a good candidate for the gastric pacemaker and then you meet with Dr. Swain. Dr. Swain only does the surgery, not the follow-up appointments/adjustments, etc.
The total cost for the gastric pacemaker surgery is about $37,000. My insurance (MVP Health) covered all but about $200 in co-pays.
Hope this helps. Let me know what others questions I can answer for ya!
Crystal
thank you so much! i’ll let you know if i can think of anything else.
I know exactly how you guys feel. it is really hard. Honestly reading that makes me think what u have written is exactly what I am feeling. It is very hard not being able to eat what you want, literally anything i eat makes me belch constantly, even water. My stomach bloats out like I am pregnant, I get a lot of air and gas and I constantly feel paranoid about how I look. The thing is I am very thin, I did lose half a stone, but half a stone now put back on, but I still have symptoms. i have done various tests, including endoscopy, colonoscopy, barium bowl meal follow through, ct scan, x rays, blood tests, I’ve been to see homeopathic doctors, Chinese, I even went to India to see a specialist there, which shows my desperation. It all started four years ago. i am nearly twenty five in December, and you are rite people think u look fine, I can easily hide the bloating, and now the tablets I help helps a little bit with the bloating, but it’s not taken my problem away. I take ‘ beat the bloat’ tablets online, I drink peppermint tea and green tea with lemon and honey every day. I am going to start the gym again to stay healthy, and people r like ‘ u don’t need to go to the gym’ you’re so thin, bla bla. But its how I feel and everyday is a nightmare, I would just love to know and feel what it feels like to be normal again where u can enjoy food without worrying about what is going to happen to you.
I see people eating in front of me every day and I think’ I remember the days when I was just like them’ before this horrible horrible disease. I don’t know what caused it, it just happened out of the blue. Sometimes I think, ok people in the world has cancer, can’t see, r dying which makes me think at least I’m still living, but even then u can’t help but feel down sometimes. I had a surgery for SMA syndrome which the doctors thought it was at first, I’ve given it 6 months, no luck! Still the same symptoms, I just wish I could have my life back sometimes soon; u can’t give up, pray and have faith. I am still searching and taking the right supplements, but they only help a little, technically my problem is still there. I have read about the pace maker, so I’m thinking of looking in to it, I don’t vomit, I just get the bloated stomach, funny noise in my stomach which almost sounds like a river. belching, a lot of flatulence, just even by eating small bites, even by drinking water/ it’s actually got nothing to do with what I eat or drink, it’s how my symptoms operates, maybe delayed stomach emptying. I really don’t have a clue. I’m not going to give up and will keep searching, but honestly u guys I totally understand how u feel. My heart goes out to you all. I hope u all find a cure 1 day.
I have recently been diagnosed with Gastroparesis and have had a really hard time with it. I am vomitting even after drinking too much liquid. This blog has been very inspirational to read and left me in tears. I don’t know how to describe how I feel and this site has taken the words right from my mouth. I am currently on reglan, zofran, & phenegran and the nausea will not quit or ease up. I feel as if my stomach is on tumble dry mode like the dryer. If anyone has any suggestions I would be very appreciative. Thanks again for all the hope and encouragement that this site has created. I will keep in touch. It is good to know that there are many more out there!