If you are anything like me, once you acknowledge that you are angry and experience the anger, it is so much easier to move on. Yesterday I felt a lot of anger and I shared it with my blogger friends. As I joined my homeschooling friends, I still felt the anger but as I checked messages on my iPhone throughout the day, I felt tears forming as I realized I didn't have to share this with others because I was getting so much support and encouragement yesterday from those of you who are experiencing the same thing. Thank you so much if you responded to my post yesterday. I needed to hear your words more than I knew.
Today was my appointment with the rheumatologist and I wasn't angry when I went to the appointment as I expected. My heart felt calm and as I talked with her I realized that my PCP was very smart in recommending a new rheumatologist to me.
Dr. J. started the appointment by asking, "Does the weather bother your joints?" (First rhuematologist said research didn't support that theory when I brought it up.") Then she totally won me over when she said, "this is up to you," before presenting any of her recommendations. We went over my recent lab work. My inflammation rates are still really high. We discussed how I have a lot of daily hair shedding and nausea the morning after taking methotrexate. Then she really won me over. She stood up and felt my hair and said, "If it continues to thin out, we will take you off of it." (When I had the same side effect with rheumatologist #1 in 2004 he said, "Oh, it is hard to tell since you have so much hair." I felt like I was making it up until my hairdresser asked if I was taking hormone therapy because it had thinned out so much). I appreciated that Dr. J. acknowledged that this is a concern for me and decided against increasing the methotrexate.
We then discussed Enbrel. I teared up as usual. She said, "These are scary drugs." BINGO! She was validating my concern. Rather than scaring me, it calmed me that I wasn't overreacting to the side effects of these drugs. We then discussed how RA has progressed even in recent months.
I left my appointment feeling calm and ready to start treatment. I feel optimistic. I feel like all the work I have been doing the last two years has not been a set back but instead preparing me for now. As my immune system is suppressed by the new drug, a good diet is going to be needed more than ever. Having a strong relationship with my naturopath to work on supplementing side effects of the medications is more important than ever. Yesterday I felt like I was taking steps backwards but today I see that I have only been preparing myself for today.
Hello Cathy I found your blog through Jo-Colburn's blog. I note you say you considered Lyme as a possible diagnosis.
ReplyDeleteI do hope you looked beyond the mainstream opinions on lyme and read through ILADS guidelines found on their website www.ilads.org
You might also like to check out www.roadback.org There is research that shows that many RA patients do respond to long term antibiotic protocols.
I note your aversion to chemicals and medicvations and your preference to nutritionists. You might be interested to hear that there are several natural antibiotics that some Lyme literate doctors use for treating Lyme and others use many herbal suppliments to support the immune system.
Sadly current fashion is with RA to suppress the immune system based on the ASSUMPTION that the immune system is attcking its own body. If indeed as in Lyme Disease it is thought to be because of a persistent or recurring infection then clearly suppressing the immune system will allow the infection to spread. There is an increasing body of doctors that advocate support the immune system.
If you want to read more have a look at my Looking at Lyme Disease blog. You say that your symptoms are not like Lyme symptoms I think if you read the symptom list for lyme you would tick off as having several on that list just from what I have read in your last few posts.
I do hope you find the cause of your RA and are able to deal with that cause rather than palliative care just treating symptoms.
Best wishes Joanne
Yeah! I am so happy to hear that you found a great rheumatologist and your appointment went well. I feel the same way in that eating well has been the best preparation possible now that I will be trying med.s. Such a great point. And I believe it really helps support our immune systems as we battle the fire.
ReplyDeleteVenting always helps me too. : ) Glad to hear you are feeling better. Hope your day is wonderful.
Hey: We're all behind you with your anger and frustration because we've all applauded your dedication to the holistic approach you've taken with your life. As you say, this is for now, not forever, and it moves you along the path, then there are both benefits and lessons to be had. As for Enbrel -- I'm sorry that it's not your first choice. For me, the benefits have thus far outweighed the concerns and I hope that this will be true for you as well. All the best - Carla
ReplyDeleteI'm so happy to hear your new rheumatologist is really listening to you. You're right; these drugs are scary, and I'm glad she's acknowledging that.
ReplyDeleteI hope your experience with Enbrel is as good as mine has been. It has made a huge difference to the way I feel and to the amount of joint damage occurring, and my only side effect is an occasionally itchy injection site. If your experience doesn't mirror mine, though, it sounds as though you've found a healthcare provider who will actually hear you and work WITH you to find the best approach. I'll be thinking of you.
Hi Cathy! Sorry I've been MIA for so long. It's a great feeling to find a doctor who listens! Yay!
ReplyDeleteI just started treatment for Lyme disease (no antibiotcs...just herbs!) which is why I've been a little absent. There has been a lot of die-off and I found out that I have parasites as well.
It sounds like you were thinking about Lyme based off of reading Joanne's comment. I'm curious about this...I'll see if you wrote a post on it.
take care,
robin