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.
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
If you would like to get all my new blogs, please LIKE my Facebookpage: https://www.facebook.com/dutchalien
If you want to get my posts the minute I post them, please make sure you scroll over the 'following' button and then select 'See first'.
Or you can type your email address in the box below and click the 'create subscription' button, I just love how my subscribers list gets longer and longer.
My list is completely spam free, and you can opt out at any time.