Yesterday I went to see my doctor about the fact that I have been having a lot of dizzy spells for the past 2 months. The most concerning part is that two of them were so massive that I almost passed out and I was very scared. My doctor is going to look into the possibility that these have been caused by my Rituxan (the chemotherapy used to treat my RA). After doing some of my own research online, it seems as though this may be the case. Dizziness is a potential serious side effect that can show up within weeks to months after the last infusion and requires immediate medical attention. If this IS the case, I will likely need to start looking into new treatment options. I have finally started to see what life can be like when a medication starts to work (after failing several other serious medications) so it will be heartbreaking and disabling to start over again. I pray that I don't have to start back at square one but it is a very real possibility that I may lose my mobility again for months to years until we find the right medication.
The other part of all of this is that if it is not the medication (and even if it is), I may need to see a neurologist. It puts extra strain in trying to get to where I need to be (including my training sessions and appointments if my husband is working) because I've decided not to drive for a while, but I have an amazingly supportive family who have agreed to help out whenever they can.
On top of this news, I finally got in touch with my rheumatologist today because I hadn't heard yet when my follow-up appointment would be. Usually when you start a new medication, he will see you every 3-6 months to ensure that things are going smoothly with no major side effects or problems (and to ensure that the medication is working). My next infusion should also be scheduled around the 6-month mark. I last saw him in January and my infusions were in February. Today when I called, I was informed that I didn't have an appointment booked until late January!
Needless to say, I had very disappointing news over the past couple of days. However, I am persistent and I they managed to squeeze due to a cancellation, so I see my rheumatologist in two and a half weeks. Now hopefully I will be able to get some answers.
After all of this negativity, I was ready for something good to happen...and it did. A few things happened. One of them is that as soon as I got home tonight, I had a package in the mail from the Arthritis Foundation in the states with 10 "Cure Athritis" bracelets! They shipped to me for free and they said they would send more if I need them. I am wearing it with great pride!
Then biggest news is that a few weeks back, the Arthritis Society of Canada contacted me after I had met several members while working as a volunteer during our Walk to Fight Arthritis in June. They told me that they were wanting to send out a letter to potential donors as they do every year. They always highlight someone's story and they felt that mine needed to be told. They asked me if I would be willing to share it and of course, I agreed. I sent them a copy of a speech I did in April and told them that they could use any part of my story for their campaign. This afternoon I received a phone call letting me know that their letter was complete and that they were emailing it to me to approve and make changes. I made no changes. It was perfect. I couldn't believe it when I read it. The whole letter is all about my story and how it relates to others, the national stats and how people can help those like me. I am so moved and humbled. If telling others my story can help to make a difference for others with arthritis, then it is worth every struggle. I finally feel like getting this disease has happened for a reason.
Even through all of the struggle this week, I was feeling very down but thanks to this whole journey with Biggest Loser, I have learned how to get back up again. Not so long ago news like this would have made it hard to get back up and keep pushing. Today when I called my mother in a good mood, she told me that she has seen a 180' change in me since I started this program. Adrian was very smart in naming his gym 180' Fitness...
For those who are interested in reading my full story, below is the speech that I submitted to the Arthritis Society:
Imagine owning your first house; planting your gardens that first spring. The good aches that follow, a sign that you’ve worked hard and can be proud. Now imagine if that pain stayed…forever.
In May 2009, that’s exactly how my life was turned upside down. In July 2009, about a week shy of my 27th birthday, I was diagnosed with Rheumatoid Arthritis. RA is an auto-immune disease caused by my immune system attacking my healthy joints.
I spent the next six months in shock and fighting to hold off depression, so that Christmas we decided to fly south to visit family, but everything went downhill. By the time we landed in Toronto Caribbean in bed sleeping and in extreme pain. While on vacation, my sister called to inform me that on Christmas Eve she had also been diagnosed with RA. I will never forget that moment as I was lying painfully in bed. At that moment, my heart hurt more than my body did.
Eight months later, after watching and knowing the signs, we were not surprised but still stunned when our father was also diagnosed with RA. Three of us in fifteen months. That is a lot for one family to handle and I worry every day about passing it on to my daughter.
After my trip, I began a more aggressive treatment involving weekly injections. I responded quickly to the medication and I knew exactly what I wanted to do to celebrate the first day I felt a lot better…I picked up my three-year-old, for the first time in six months.
Unfortunately for me, the medications seem to stop working almost as quickly as they start. Thanks to work by organizations like the Arthritis Society, I’ve been able to try several medications as there are many to choose from. However, my medications cost over $20,000 per year. I am blessed to still be working full-time with wonderful insurance to cover the costs, but not everyone is so lucky.
I am now 3 years into my disease and I have failed four drugs from three drug categories. I am now on chemotherapy infusions and continue to hold out hope that they will work. In the meantime, I have learned to swallow my pride and to ask for help. I have learned that I’m stronger than I ever imagine I could be and that my pain threshold grows with my disease. I’ve learned how to appreciate the little things like being able to brush my own hair or get myself dressed in the morning because I sure miss them on the days that I can’t. But even more, I’ve learned that support – from family friends and the special people at the Arthritis Society – that is what keeps me hopeful and helps me get out of bed every day. If we continue to work together, we will one day find a cure and I will one day be pain-free.
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