A day in a life with rheumatoid Arthritis – Part 8: What Do I Do Now?

Holy moly, I give up. Why is it, just when you think things are going good, something happens to burst the bubble?

The blog post I planned to write last week was to say good-bye to “A day in the life with RA” titles. Yes indeed, it felt so great that symptoms were at an all-time low. I decided that I would not focus on RA any longer in blog posts, in fact, I made the declaration to not even think or talk about RA. I would seal my lips and never utter another word on the topic.

But. Those thoughts quickly vanished. It started on Thursday evening when I suddenly realized that my eyes felt very scratchy and bothered by light.

In the morning, I called the optometrist and went to her office right away to get my eyes checked. The exam showed they were extremely dry and the tear glands were somewhat clogged. The optometrist indicated that “dry eye” is one of the symptoms of RA as well as with other autoimmune disease conditions. “Oh joy”, I thought.

I left the office with instructions and lubricating drops.

In addition to the dry eye, my throat was extremely dry and the inflammation level was up significantly in my feet and ankles. Getting around was tougher than normal. I thought back to what I had to eat the previous day. Hmm, that’s the day I decided to try an omelet. It had been about three months since I’ve eaten eggs. Maybe that accounts for the flare-up, I reckoned.

Over the weekend, the inflammation in my feet and ankles seemed to subside a bit, I think. However, who knows why, but Monday brought increased inflammation again.

Today was the kicker though. Today, Miss Hop Along was escorted arm in arm by two of the tenants who live in my building after they saw me inching my way from the parking lot after getting out of my car.

See the squirrel climb the wall.

Hmm, I thought back over my diet of the last few days and wondered if it was the pecans in the gluten, dairy, egg and sugar-free muffins I’ve been eating. Maybe I’m sensitive to nuts. Maybe I am a nut.

Or, maybe the increase in symptoms is due to the fish oil supplement I began taking recently because it’s recommended to reduce inflammation.

I just don’t know. And, quite frankly, this is getting ridiculous.

I’m at the point where I ask myself, “What do I do now?”.

In my last post three weeks ago, I mentioned a much improved situation with test results to back it up (click here to read).

Now, I feel as though in reality, the dietary changes did nothing. Could it be that my body is reacting finally to the gradual decrease in prednisone by becoming more inflammed? Who can really say for sure why my symptoms improved and now seem to show little improvement.

So, do I scrap it all or do I keep going?

I can’t let my rheumatologist hear about this setback. I can see the glimmer in her eye as she says, “So, are you ready to try the new RA drug I recommended to you way back in September? You know, the one that is a IL-6 receptor inhibitor and is given intravenously once a month.”

No, we can’t let her know about this situation. We have to find another answer.

Sometimes I wonder why it seems to be so difficult to get well. Then, I remember.

I have access to a plethora of pharmaceuticals at a cost of $2 per prescription. Some of the RA medications cost upwards of $1,700. per month, but in my case, the government pays the bill. Thank you, government.

But here’s the thing, I view pharmaceuticals as a win-lose scenario, where the patient is the loser. I prefer the notion that the body will heal itself, once it is given the correct environment to do so.

Unfortunately, the medical system I’m under does not adhere to the; body heal thyself notion, nor, will it tolerate freedom of choice. Sure the government will fork over $1,700 per month for pharmaceuticals, but it won’t cough up a nickel for non-pharmaceutical treatment.

The Sun is on the horizon.

I guess, I have to keep going to find the correct environment for my body to heal itself and forget about trying to figure out why this flare-up is happening.

I need to keep focused on the goal: Make the best of each day no matter what seems to be going on in the moment.

You can do it, Marianne!


15 thoughts on “A day in a life with rheumatoid Arthritis – Part 8: What Do I Do Now?

  1. (((Hugs))) Praying for you right now, Marianne.

    It is very frustrating that insurance won’t pay for alternative medical practice, either.

    And yes, yes, yes to making the most of each day. Have you read Ann Voskamp’s book, “One Thousand Gifts?”

    • Thank you for the prayers, Patricia. (((Hugs))) back at you.

      As you well know, chronic disease is frustrating in an off and on way.

      It’s a beautiful day, my brother from Calgary is visiting me today. What could be better than that?

      I’ll check out the book you mention. Thanks Pat. πŸ™‚

  2. I think you’ve hit on it there at the end: Forget about the why and stay focused on the goal. Of course, you do need to be aware of the possible “whys” so you can narrow down the correct environment for your body…but don’t dwell on the frustration.

    I know it sure does get tiresome to have setbacks all the time. And dealing with government programs…don’t I know it! It’s as if they were designed to keep us down.

    Don’t give up. Live your beliefs. A life without integrity doesn’t do our bodies any good. You can do it!

    • Hi Nancy,

      Thank you for your encouragement. Your words bring tears to my eyes (which I need right now).

      It’s heartwarming to know those who understand the trials and tribulations of others. I’m blessed with empathic blog readers.

      I won’t give up. I’ll keep experimenting to find the correct environment that will allow my body to heal.

      Thanks for reading and commenting, Nancy.

      Hope you have a wonderful wonderful day as well. πŸ™‚

  3. I’m sorry you are having to deal with this, my friend. Government sponsored medical insurance leaves something to be desired–at least my Medicare here in the US does. Hang in there, Sweetie. You are in my thoughts and prayers.

    • Thanks Kathy. I will hang in. It would be too easy to let discouragement overtake me.

      Hugs to you, my friend. Thanks so much for reading and commenting. Blog neighbors help give me strength.

      Hope you’re having an excellent week. πŸ™‚

  4. Big hugs to you, Marianne. I hope you find the culprit soon and that you’re once more on the road to healing naturally. Like you, I’ve found that trying to stay off of medication can be so much more difficult than just giving in and doing what the doc wants. The medical/insurance culture doesn’t do much to make it easier.

    Hang in there. Sending healing thoughts/energy your way.

    • Thank you, Robin. Big hugs back to you as well. I may have found the culprit. I spent the day in bed Thursday. It seems I’ve come down with a virus. This likely explains the extreme flare-up of RA symptoms. I feel a bit better today. Time will tell if and when I need to re-visit the meds situation.

      Thanks for reading and commenting, Robin. Hope you have a great weekend! πŸ™‚

  5. Oh, Marianne…I am sorry for this set-back. I hope it was just a virus, and that you’ll continue to feel better. This is so hard–with all the meds scenarios. Hugging you, wishing we could pause for tea and talk, talk, talk.

  6. Hi Marianne, I just stumbled across your blog and this post completely resonated with me today. I also have RA and have been looking to find what will heal my body naturally. I have just completed a round in the HCG diet which was complete heaven as my body loves HCG and I have no symptoms, off the drugs and have been over the moon about it. Today my symptoms have flared up as the HCG is out if my system and am feeling sad and lost, what next? I like you have the choice of drugs but have stuck with prednisone as I feel that the side effects of anything else is not exactly great for your body.
    Great to see you writing about it, it’s nice to connect with people going through the same thing, feels less lonely.

    • Hi Alicia, Thanks for visiting my blog. Sorry to hear you have RA. Chronic disease can be frustrating to live with at times. It’s so up and down. The rhyme and reason is hard to pin down. It’s good that you got some relief from symptoms for a while. Sorry to hear of the flare. Hope you’re feeling better soon. Take care of yourself and thanks so much for your comment. Best, Marianne. πŸ™‚

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