At the end of March, I returned to the Seattle area for a year’s worth of medical care in 10 days. Even though my medical insurance covers me throughout the United States, I feel it is important to maintain centralized healthcare while I am on the road, especially with my chronic disease.
There is a lot to be said for taking care of all your annual medical appointments in less than two weeks. My PCP wanted a fasting blood sugar. No problem – I fasted for a colonoscopy and asked the nurses to draw my blood before the procedure. The dentist recommended replacing a filling. Easy peasy – I was already scheduled for a cleaning anyway.
The annual physical went well. The full-body dermatological exam – no issues; this pale white girl with lots of moles and a history of sunburns as a child didn’t need anything cut off or burned off. The mammo looked good. I’m not a big fan of dental appointments, but I got through deep cleaning, the re-seating of a crown, a root canal, and the re-filling of a cavity. I got my every-two-months Entyvio infusion for Crohn’s. I am off anti-depression medications for the first time in 10 years after meeting with my psychiatrist, a wonderful development which I attribute to ceasing the practice of law and living a much less stressful life.
There was even some good news at the office visit with my gastroenterologist. I made my pitch to go off methotrexate, which I injected in my abdomen once a week to help prevent rejection of Entyvio. He replied that most rejections occur within the first year of getting the infusion, and I have been on Entyvio for one year. In that year I initially took Azathioprine to help prevent the development of antibodies, then methotrexate. I recounted my miserable experience with methotrexate, which is poisonous chemotherapy, citing terrible nausea and hair loss. The doctor agreed that I could stop taking it! Yay me!
The following week I returned to my GI for my colonoscopy. Here’s where things get encouraging, yet confusing and frustrating. My colon looked the best I have seen it in 20 years. Biopsies showed inflammation only in the rectum. The polyps found were not pre-cancerous, which is a welcome change. The doctor’s impression was that Entyvio is working, obviously, that I should continue it, and we should recheck with another colonoscopy in 1.5 to 2 years. No colonoscopy again next year? Heaven!
I am grateful and relieved to get this news. But I am still having symptoms of diarrhea and “gotta get to the bathroom right now” every day. I discussed why this could be at length with my doctor.
The inflammation found in the rectum could be a culprit, and he is prescribing medication for that. Also, in addition to Crohn’s disease, I could have an additional overlay of IBD or IBS – lucky me. Regarding urgency, all those years of my poor muscles fighting to keep it all together have likely taken their toll, and there’s absolutely nothing that can be done for that. To assist my doctor in drilling down on the continuing problem, I have begun to keep a journal of daily activity. Yep, folks. I’m keeping a poop diary. Oiy.
Now that I am no longer taking methotrexate, there is also the specter of antibodies developing in response to the drug, which would, at some point, cease Entyvio’s effectiveness. I vowed not to futurize about this, especially in light of the comforting news that two more drugs are in trials right now.
So where does this all leave me for now? Still having daily symptoms of up to three events per day, still thankful I travel with a toilet, clearly much better than I was last year, but with that aura of “mystery illness” that no one can quite explain. But, as when I was a litigator, I will take my victories where I find them and be thankful for the good news.
This Post Has 27 Comments
That is good news. The glass is half full. Changing the subject, after reading your blogs I was thinking that you should visit the Northampton, MA area and check it out as a potential place to land some day. I think you would really enjoy the area and fit right in. One big plus is the fact that there are 5 colleges close by so lots of interesting cultural and lifestyle options. Yes, it does get cold in the winter but that’s why you have an RV.
Jeff, I am so looking forward to Massachusetts! I’ve never spent any time there, including Boston. Can you believe that? I’ll be sure to check out Northampton. My plan is to spend next summer and fall on the East Coast.
Sounds like you had a great check-up visit. Yay, for taking one less pill! (The anti-depressant). It’s amazing how much stress exacerbates everything. Finding joy and relaxation are incredible healers!
Wow! Sounds great! Congratulations Tammy 🙂
So glad things have improved! I have to agree with Marivic about the stress factor though. Be happy and continue to enjoy life. After all, you are in the City That Care Forgot. Lassais le bon temps roulez! Hope to see you soon!
Love you so much, Aunty! I am glad you were given some good news! Seems like the open road has been the best medicine for your depression. You’re such an amazing, strong lady and you inspire me.
Glad to hear things are looking good, mostly. I hear you on the removal of the stress, I am looking forward to seeing if I can get off my blood pressure meds this year now that I am not ‘on call’ 24 hours a day, 7 days a week. I feel 20 years younger!
Robin, that would be great!
Glad to hear that you are doing better. It is amazing what destressing can do for the body. I think if I didn’t have my knitting I would be some kind of axe murder or something, lol. By the way, speaking of destressing, I am on a total house cleanse and I have in a way have you in my head as I have been doing it. In my mind, I pretend that I will be living in a tiny space and I can only have the things that I truly love and are really needed. Needless to say, my yarn, needles and my vintage dresses are not to be messed with! Everything else is fair game.
Cocoa the Axe Murderer does not have the same ring to it as Cocoa the Knitter! I wrote about the Japanese book on the art of tidying in another blog. Have you read the book? Some of the stuff was just not me, like taking off your coat and thanking it at the end of each day, but a lot of it was very helpful to me as I downsized.
Good news all around. I think you are an inspiration for people who have a chronic condition; you show others that there is still life to be lived! Two weeks of medical mania is behind you so now you can look forward to the next stop on your adventure.
Thank you, Debbie!
Excellent news. You are motivating me to do the same (leave the practice of law and travel). Stress sucks. Keep it up!
As I wrote in a previous blog, becoming a lawyer was one of the best things I ever did. Ceasing the practice of law was also one of the best things I ever did. The 20 years in-between were, for the most part, pretty good. Then, the years began to get harder. We all have our tipping point, and 20 years was mine.
Congratulations on being the master (mistress doesn’t quite work) of your “chronic condition” – not the other way around, which so often happens. If you ever pass through Pendleton drop me a line!
I will, Linner, and thanks!
Tammy,
I really look forward to meeting you one day soon on the road! So much to talk about.
We are shopping for our RV now, bath and a half, for the same reasons you just detailed. And I’ve just finished a book on ‘living beautifully with chronic illness’ – it is at the publisher’s now.
Looking forward to all the new medical stuff coming out of research, and celebrating the improved health we have right now, is where it’s at!!
Happy for all of your good news!
Donna
(Sexypast60.com) and FB – sickandtiredandsexy page
Donna, looking forward to the book!
Sounds like progress. Congratulations.
Do you have a plan to stop in Pittsburgh? Aside from crappy winter weather it meets a lot of your list of needs!
I do plan to stop there! Thanks!
Yay, Tammy! Positive outlook + improving health = vivid justification for your brave changes
“Vivid justification.” I love that phrase!
If you send me the poop data I can make so excited fancy charts and graphs.
That would be hilarious!
I came across your blog quite by accident and I’m so inspired by you and your positive/inspirational postings. I’m a 58 yo battling Crohns for the past 9 years. As of today ( we know how fast that can change) 80 mg. per week of Humira seem to be doing some good.
I will continue to follow your blog as I intend to travel as well all the way to Nigeria to visit my daughter and 2 grand girls.
Happy Traveling!
Ginger from Seattle
Ginger, thank you for saying hello! I’m glad to hear the Humira is giving you some relief. Nigeria? That’s wonderful! You go, girl!