No. 8 – Find Community

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When I get asked what positive things RA has brought to my life, I usually burst out laughing because the question is so absolutely ridiculous. Except for the fact that without RA, I never would have found the amazing community of people with RA. It has been my strength, my inspiration and my passion. I think this is critical to anyone with a chronic disease like RA.

Read the full article here: https://rheumatoidarthritis.net/living/no-8-find-community/

No. 7 – Enjoy Your Life

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Sometimes it seems like RA can suck all the positive things out of your life, but it’s important that you enjoy your life as much as you can. In the seventh of 10 things I would like to tell my newly diagnosed self, I share some of this journey on rheumatoidarthritis.net here: https://rheumatoidarthritis.net/living/no-7-enjoy-your-life/comment-page-1/#comment-17987

28 More Pills + A Red, White, Blue, Green and Purple Knee

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So I had the second esophagus procedure this week, and that went pretty well. Hopefully that will solve the problem although there is a chance that I may need some additional testing, but not for a few weeks. Fingers crossed.

That’s the good news. The bad news is that the doctor discovered that what we thought was acid reflux is actually bile. So instead of taking one additional pill first thing in the morning, I have to take a huge tablet four times a day — 28 times a week. And I can’t take them with other pills or with food, so I’ve got this 4X a day thing that is completely offsync from anything else I do.

I counted the pills I take and it comes up to 30 pills per day which breaks into 20 prescription pills and 10 supplements. (Some of these are a single medication that I take multiple times per day.) That’s 210 pills per week or almost 11,000 pills every year. That’s not taking into account if I need Tylenol or other pain medication or Claritin for allergies, or anything else. In addition, I have a daily injection, a weekly injection, and an infusion every six weeks. Sheesh.

In other news, my knee has been bothering me since we came back from Havana. I wound up walking up (and down) three steep flights of stairs. Since that time, my knee has been getting more and more sensitive to pressure to the point that I actually nearly stopped walking. I was down to walking/limping the minimum 30 minutes a day then having to stop and rest/ice when I was done. Not a happy girl.

Last Friday I had an appointment with my orthopedic surgeon, since this is the replaced knee. Everything looked good on the Xrays. Where I indicated it was painful is on the bottom part of the knee where a tendon inserts into the knee joint and, assuming horses instead of zebras, my doctor did a steroid injection in my knee right there, just below the actual joint. Which is a good thing because you really can’t/shouldn’t inject into a replaced joint.

By the next day, Saturday, things had actually improved.

But then I did my personal impression of falling and not being able to get up. Directly on the knee.

We were at the movies and I had gone to the ladies room. On the way back I somehow tripped on the part of the floor that turns and starts to incline up into the theater, smacking my full (over)weight directly on the replaced knee joint. I couldn’t stand, I couldn’t breathe, it hurt so bad I couldn’t even cry. Of course it was a very loud movie and I didn’t think anyone could hear me, so I crawled/dragged myself along the floor until I got far enough into the movie theater that I got someone’s attention who went to find my husband and theater management.

Long story short, I found out that titanium is harder than flesh and bone (good thing). We went to the ER and, after Xrays and a couple of hours, they determined that the artificial joint was still firmly attached and none of the naturally occurring parts had been broken.

By the time we got home, I was able to put enough weight on it that I could get around with my walker and by the next morning I was walking without assistance, although with a limp. A week later it’s still very sore. I must say, however, that I don’t think I’ve ever had a more colorful bruise — even when I had the knee replaced originally. I was going to post a picture but it is still a bit too colorful for good taste. But it definitely has red, white, blue, green and purple hues.

The next couple of weeks are going to be busy with travel so I may be offline for a bit. In the meantime, I wish you the best health and happiness, and I thank you for checking in.

No 6 – Ask for Help

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This is the sixth of ten things I’d like to go back and tell my newly diagnosed self about living with RA.

Being the micro-managing control freak that I am, asking for help is completely contrary to my nature. Having RA puts a whole new perspective on the situation. I share some of the things I’ve learned about asking for help (including how hard it sometimes is) in my recent article for RheumatoidArthritis.net here: https://rheumatoidarthritis.net/living/no-6-ask-for-help/

Havana Pics

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Since (most of you) asked, my wonderful photographer husband has posted pictures of our recent Havana trip to his SmugMug account: jwktexas.smugmug.com. Click on “Cuba” on the left hand side. When the gallery opens, you can flip through the pictures individually by clicking on the > under the big main picture, or you can click on the individual thumbnails. Photo albums of some of our other trips are also on the site if you’re interested. Enjoy!

 

Updates – #Havana and Esophagus

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This time last week we were just returning from our trip to Havana. Given that President Trump is supposed to tighten restrictions on Cuba again, I feel lucky to have been able to visit.

We went on a Norwegian Cruise Line cruise that gave us two full days and a night in Havana. The experience was amazing and impacted me in ways I couldn’t imagine. The people are incredible — friendly and well-educated. But it was a strange sensation to visit a truly communist country. While the populace may be leaning toward freedom and capital endeavors, the effects of the revolution (recent in terms of global history) are still very much apparent.

In other news, this week after our return from Havana I went in for corrective surgery for my esophageal stricture. This is a narrowing of the esophagus that makes it difficult to swallow and where food can get stuck, sometimes requiring emergency surgical intervention. Basically, I was under anesthesia and the doctor put a tube down my throat with a camera and a type of balloon that inflated and stretched out the narrowing. The camera also allowed the doctor to do a visual exam of my esophagus and stomach. The procedure went well, but there were some surprises. (I’m not much for surprises anyway, but I’m really against them when it relates to surgery.)

My esophagus was so constricted that my doctor couldn’t dilate it fully. In these instances, there’s a risk of rupture or perforation if you try to stretch it too much. This would require major surgery to correct. So he dilated it as much as he could safely and sometime after three weeks, I will go back in for a repeat procedure to finish things up. But in the process of the exam, he found some erosion of the stomach (probably caused by all the medication I take) as well as some indication of celiac disease. I have to take MORE medication now to protect my stomach. Biopsies will tell us if there are any infections or more serious issues like celiac disease or cancer. Sigh.

But other than being a bit sore and hung over from the anesthesia, I’m doing well. No pizza or crunchy chips and hot salsa for a few days but other than that, I expect a good recovery.

I hope you all recover well from any adventures in your life and, for those of you who celebrate the holiday, a happy Father’s Day this weekend.