Healthier Stay


My 30 Things: Invisible Illness Week 2015

30 Things About My Invisible Illness You May Not Know

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Donna Kay and Jules at our first in-person meeting! So much fun!

1. The illness I live with is: Crohn’s Disease, Ulcerative Colitis, Chronic Functional Abdominal Pain and AutoImmune Arthritis
2. I was diagnosed with it in the year: 1997
3. But I had symptoms since: 1995, but I have had some minor symptoms for most of my life.
4. The biggest adjustment I’ve had to make is: Changing my plans for my life.
5. Most people assume: That Crohn’s is like eating bad food.
6. The hardest part about mornings are: Managing my medicines so that I don’t get an attack, also the stiffness and swelling in my joints is usually worse in the morning.
7. My favorite medical TV show is: Kingdom Hospital
8. A gadget I couldn’t live without is: My Medtronic Remote
9. The hardest part about nights are: Managing my sleep hygiene so that I can stay as healthy as possible.
10. Each day I take __ pills & vitamins. (No comments, please) 26
11. Regarding alternative treatments I: Am open as long as I research it and can find a reputable practitioner to work together with my other team of doctors.
12. If I had to choose between an invisible illness or visible I would choose: Neither, I would choose health.
13. Regarding working and career: I have adjusted to my new surroundings and I have found other ways to stay social and to keep current with my peers and the world.
14. People would be surprised to know: That I love Karaoke.
15. The hardest thing to accept about my new reality has been: Feeling like I had been taken out of functional society.
16. Something I never thought I could do with my illness that I did was: Find happiness in all of my relationships.
17. The commercials about my illness: Can be silly, but has also brought a TON of awareness.
18. Something I really miss doing since I was diagnosed is: Eating fruits and vegetables.
19. It was really hard to have to give up: School and the plans for my career.
20. A new hobby I have taken up since my diagnosis is: Advocation and crochet.
21. If I could have one day of feeling normal again I would: Eat anything I want and lots of extreme sports.
22. My illness has taught me: To find the positive in as many situations as possible and to look deeper at the people I meet. 
23. Want to know a secret? One thing people say that gets under my skin is: Why don’t you just suck it up.
24. But I love it when people: Treat me like a regular person…but special!
25. My favorite motto, scripture, quote that gets me through tough times is: Proverbs 15:1 A gentle answer turns away wrath, but a harsh word stirs up anger. 
26. When someone is diagnosed I’d like to tell them: Take my hand and a deep breath, you are not alone! . 
27. Something that has surprised me about living with an illness is: The amount of time it takes to try to be as healthy as possible.
28. The nicest thing someone did for me when I wasn’t feeling well was: Brought food with recipes and continued checking.
29. I’m involved with Invisible Illness Week because: I want everyone to know that we can do so much and that we are Chronically Awesome!
30. The fact that you read this list makes me feel: Grateful and humbled.

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Gratitudenal Haze

Gratitude is a quality similar to electricity: it must be produced and discharged and used up in order to exist at all.  ~William Faulkner

Thanksgiving starts the holiday season. We gather together to give thanks for our bountiful harvest and everything that we have been blessed with this year. I know the holidays can be stressful and sometimes overwhelming, but I am always thankful for every one of my family members at home and far away. I have had a great year so far and I am so very grateful for all of my fantastic readers, followers, FB friends, tweeps, G+’ers, fellow bloggers and for any other type of cyber connection I have to you guys! I can go on and on about my year but I will save it for the Christmas card.

As I sat down to reflect on everything I am so darn thankful for I fell into a type of stupor a type of Gratitudenal Haze, if you will. It’s easy to lose your focus when you are inundated with so many blessings. I was quite overwhelmed at what all has transpired. I launched http://www.healthierstay.com, started writing this blog, met Jules and began working with What The Jules; professionally it’s been a big year. So many wonderful reasons to be thankful and it left me rather dazed. So I have decided to focus on the great medical achievements my brother and I have discovered and undergone this year.

My brother Nicolas also has Crohn’s, he has had one surgery and was resigned to perhaps having to have another one for a 90+% blockage in his colon. He had been so sick he almost died 3 times and had been in the hospital over 12 times in 10 months, it was getting to be a bit ridiculous. As a last ditch effort, one of his doctors suggested an intestinal stent. The stents were first used to help cancer patients whose disease made it impossible to resect their intestines. Since then it has been used with balloon ablation therapy as an alternative to surgery. Since his stent placement my brother has been taken off prednisone and many other medicines and is feeling much better and there is a chance that he could go into remission! For the doctors, my brother, his wife and children along with the stent inventor, I am eternally grateful.

I have also had a medical breakthrough this year. I went bionic. In August I had surgery for an implantable pain pump (IPP) placement. I was taking Morphine Sulfate, Dilaudid andNorcofor my pain every day and the pain was still really bad. I finally ended up in the hospital in April (the first time in five years) and I decided I needed to change my regimen. My pain doctor recommended an IPP; he had used them before for different types of patients and thought it might be a viable option for my Crohn’s pain. I love my pump, it is completely invisible under my skin and I am using 400% less medicine. I will write a post with all the gory details later and share with you the pros and cons. I feel better, no more withdrawal, or waiting for my pills to kick in so I can function. I still have pain, just like I would with pills, but the management of my pain is much better. On pills I was always between a six and a seven, now I’m usually a four or a five, unless I’m having an attack. Plus, as a Sci-Fi geek, being bionic is a bonus. Hmmm Lady Vader, I like the sound of that. Padme was pretty awesome until she wussed out at the end. Anyway, I am so thankful for my doctors, nurses the mad scientists that came up with the IPP and my family for supporting me and helping me stay away from the dark side.

I hope when you are sitting around the table or hanging with family this season that you get a chance to ruminate on some of the circumstances that you are thankful for and don’t get caught in the haze.  Have a wonderful holiday season.

Crohn’s Has Hit the Big Time

When I was a kid, my Dad was in the hospital a lot. Trying to explain what was wrong with him was definitely an arduous task. There was not very much information available. When I was four years old, I would tell people that my Daddy’s tummy was trying to eat him. That’s how I understood the situation because Crohn’s was such an enigmatic disease. Some of his guts were bad and the doctor had to remove them because they did not play well with others. In less than 30 years, Crohn’s has exploded from a rare, enigmatic disease to an all star ailment. Crohn’s has hit the Big Time. For years, my dad was the only one I knew with Crohn’s and now almost everyone I meet has heard of Crohn’s disease.

Obviously, there are pros and cons to this development, these days approximately 500,000 people are diagnosed with Crohn’s in theUnited States. There are definitely more occurrences than when my dad was diagnosed. It is also much easier to pinpoint the symptoms of Crohn’s these days. Tests and biopsies are usually outpatient and no longer have to leave permanent scars, so more people are properly diagnosed.

The reason I think Crohn’s has become a “Big Time Player” is we now have public exposure (the good kind not the trench coat kind). We have resources that have not been available in recent years. I’m really happy because there is a plethora of information about Crohn’s and other Inflammatory Bowel Diseases. There are commercials, Public Service Announcements, web sites and Celebrity Spokespersons. Heck, there are even Class-Action lawsuits! Crohn’s and IBD are in the spotlight and I am thrilled. More awareness means more research, which leads to better chances of a cure!

With the new celebrity status, and celebrity patients, the internet is teeming with information for patients. That’s fantastic, but with great exposure comes great consternation. It can be hard to know which resource is the best for your needs. There are lots of books, web sites and WebTV channels out there; these are the sites, channels and organizations that I use. *Disclaimer-I am not a health care professional. I use these resources to research my posts and my own illness. Any information or regimen changes should be discussed with your own medical team.*

Websites:

The Crohn’s and Colitis Foundation is the foremost expert about Crohn’s and IBD and also the most well known.

Webmd.com is known for their helpful information and a user friendly site.

Health.com I like this site a lot. I think it is very easy to use and answers a lot of the questions I have in slide show form. Fun!

Emedicinehealth.com is another great resource that explains the disease, symptoms and procedures.

Everydayhealth.com easy to understand and explains Crohn’s from the early stages through remission.

Wegohealth.com a web TV service where patient advocates share their stories and advice on the Crohn’s channel.

Painchannel.tv is more for the chronic pain that accompanies Crohn’s and other chronic illnesses. Each episode deals with different types of pain care and management.

Of course I also recommend www.healthierstay.com andwww.whatthejules.comfor more info and interaction with the Crohn’s, Patient Advocate and Chronically Awesome community.

I hope these will be of help to you. So much has changed since I was little and we now have great resources. I’m always trying to find new developments that will help us, as patients, lead healthier, more normal lives. One thing I have learned is Crohn’s is an autoimmune disease and my four year old explanation wasn’t so far off.


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