World Arthritis Day 2017: It's in your hands, take action!

For some reason I only just found out that today is World Arthritis Day. I had no clue that a special day like this existed. It's still very necessary to spread awareness about rheumatic and musculoskeletal disease, especially because you often can't see it on the outside.

world-arthritis-day

I was diagnosed with rheumatoid arthritis on July 27th of this year. I remember sitting in the doctor's office, just crying an crying. Crying because he finally (after a lot of visits) said out loud that I had RA. Crying, because I had no clue what my future with RA would look like. Crying, because I didn't want to start taking (more) medication.

I was already taking medication for my IBS and I am not a strong proponent of taking a lot of medication. I soon found out that without medication, my RA would progress, and of course that's not what you want. If a medication can slow that process down, you'd better take it, right?

I found out that there are different kinds of medication to treat RA:

  • NSAIDs. (Nonsteroidal anti-inflammatory drugs): these can relieve pain and reduce inflammation. For example: ibuprofen and naproxen sodium (over the counter). There are also stronger NSAIDs, but you have to get a prescription for those. Side effects may include: stomach irritation, heart problems, liver and kidney damage, ringing in your ears.
  • Steroids. (Corticosteroid medications): these reduce inflammation and pain and slow down the joint damage. For example: Prednisone. Side effects may include: weight gain, thinning of bones and diabetes.
  • Disease-modifying antirheumatic drugs (DMARDs): these can slow down the progression of RA and save the joints and other tissues from permanent damage. For example: methotrexate, leflunomide, hydroxychloroquine and sulfasalazine. Side effects may include: liver damage, bone marrow suppression and severe lung infections.
  • Biologic agents (biologic response modifiers): these drugs can target parts of the immune system that trigger inflammation that causes joint and tissue damage. These are most effective if paired with a nonbiologic DMARD. For example:Orencia, Humira, Kineret, Cimzia, Enbrel, Simponi, Remicade, Rituxan, Actemra, Xeljanz. Side effect may include: allergic hypersensitivity, increased risk of infections, injection site reactions, low blood pressure, cancer, congestive heart fail, anemia.
  • These lists are by no means complete.

I started with one week of Prednisone. I felt so much better, until I had to stop it. I (think I) felt like a junk rehabilitating. Then I had some time without any meds. Then I started Prednisone for a week again. And again I felt much better (until tapering down, during my vacation). My rheumatologist said that if the Prednisone still works the second week, I did not only have Fibromyalgia, but also Rheumatoid Arthritis. Of course, by then I could have known, but instead of believing it for a 100% I kind of denied it, I think.

After the doctor diagnosed me (I also had a very high rheumatoid factor, pain in my joints for more than 6 months and I was very tired), he put me on methotrexate. I started with 4 tablets; once a week, then 5 tablets; once a week and after that 6 tablets once a week. My IBS certainly didn't like these tablets. I spend a lot of time in the restroom.

That's when I asked my doctor if I could start injecting myself with methotrexate, because I heard that was easier on the digestive system. And so I did. After one injection (that I did with the help of my husband at home, after a short course at the dr.'s office) I had a very severe migraine attack, that lasted 5 days. The most scary was that I couldn't see anymore and couldn't walk. It was like my legs didn't know how to walk anymore. My IBS was also still very bad. I just couldn't do anything. A few of the less important side effects for me were: tiredness (even more than before), a lot of hair loss and just simply feeling 'off'.

I contacted the doctor, who said I had to stop taking methotrexate immediately. I did. I felt better after two weeks. Then I had to start injecting half the doses of the methotrexate. That went okayish the first week, but the week after that, I was constantly in the restroom again. I couldn't do anything. I wasn't myself anymore, I felt so miserable. I had no clue how to keep this going for the rest of my life.

Again the doctor said to stop taking it. I am finally back at how I felt before I took the methotrexate (that took me 2 weeks) and I have an appointment scheduled at my rheumatologist for next week, to look into other medications. I am so hoping that these will be accepted by my body. I know that I need to take a medication that will slow down the progression of my disease. I am kind of scared of trying something new though. My body always responds really sensitive to medication, no matter what I take.

If I look back at the whole process so far, which took me more than a year so far, I can say that this disease did make me look different at life, in a positive way. It made me appreciate my health on a good day, it made me not want to waste anymore time on stupid things, such as worrying. Worrying doesn't help anyone. Not me, not the people surrounding me. I am not going to be the victim of this disease, I will look at what I can still do. I have to learn how to balance my energy. I still do too much if I feel better.

I have to look at sports that I can still take part in, if my new meds work. I would love to try yoga and swimming. I do think running, which I used to do before, is off the hook now.

I still have a lot of things I want to accomplish in this life, and I am sure I will accomplish them. It's just a matter of setting clear goals, thinking about what stops me to get to my goal (other then my disease) and start working on them. I've always been a person that lives in the now, not in the past. I do always think about the future. Now is the time for me to start actually planning what I want in my future and how I can get there. It's time to start giving myself permission to live the life that I choose.

If I have to answer these questions (from the book Straight Line Coaching by Dusan Djukich): Will my life be a warning to others? Or will it be a powerful example of what's possible for a human being to do? 

I want my life to answer the second question, so that's what I am going to make happen.

I ordered myself a Panda Planner, which is described as 'best daily calender and gratitude journal to increase productivity, time management & happiness'.

When it arrives, it's time to start answering these questions (also from the book by Dusan Djukich) ON PAPER, instead of in my head:

  • Who am I?
  • Why am I here?
  • What do I choose to create?
  • What do I really intend to achieve?
  • Am I willing to get it?
  • What would guarantee it?
  • How can I ratchet up my accountability level?

And I will make a plan!

I will have a purpose and then I will know what's the next step to take. I will start planning all of this out by setting honest goals, I will start choosing my own path.

We either make ourselves miserable or we make ourselves strong.

The amount of work is the same.

~ Carlos Castaneda

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