I realized on my walk this morning that for the last few days I have felt angry.
Tomorrow is my appointment with the rheumatologist and I have decided to listen to what she wants me to do and then follow it. This, along with a list of other things this morning makes me feel angry.
I feel angry that yesterday when I was sitting with friends I ran my fingers through my hair and the hair kept falling onto my clothes reminding me that even when I am enjoying myself and forgetting about RA, it is still there. I am also angry that I then couldn't stop running my fingers through my hair to see if it would stop falling out. It didn't.
I feel angry on Saturday mornings when I wake up to nausea from taking my methotrexate the night before.
I feel angry that on my walk this morning I was hit with the scent of some one's dryer sheets. I try so hard to keep chemicals out of our house but still get hit with them, even when doing something as simple as taking a walk.
I feel angry that our dog Izzy has to walk through fertilizers in order to get exercise. Our holistic vet mentioned that Izzy's recent all night vomiting could have been from something as simple as licking fertilizers off her paws.
I feel angry when I read alternative newsletters that say with a little work and determination I can heal myself. (Well, I still believe the body wants to heal but feel angry that with all my work my rheumatoid arthritis has become more severe rather than improved.) I just feel angry reading articles that make it all sound so simple.
I feel angry that I am no longer Steve's bike riding partner. I truly miss riding with him but so thankful that it is my son Alexander who has taken my spot.
I am angry that we are continuously pouring out money to make sure our family has foods that will fill them up with nutrients rather than sugar and artificial ingredients and that we have to pay extra to have clean water to drink and bathe with. Shouldn't everyone be guaranteed these things?
I feel angry that if I don't prepare my own meals I have no guarantee that I am eating meat that was humanely raised or veggies that were grown without pesticides or washed without chemicals. I often wonder how years of being exposed to chemicals contributed to my compromised immune system.
I feel angry that in the last few months I have enjoyed some meals out with family and friends and immediately PMS symptoms returned. I am also grateful for this because it does remind me that clean eating does pay off.
This is a list of what makes me angry today. I don't like putting negative energy into the universe for others to read and apologize to my readers. Yet, I felt this need to share today. I feel I needed to let this anger out of my body so that I could find the real reason I am angry today because the list above are things that bother me on a daily basis.
So, what I am really angry about today? I am angry that I wasn't one of the rheumatoid arthritis people that succeeded without drugs. I wanted so desperately to be different. I wanted to be unique in my approach to rheumatoid arthritis and felt deep in my soul that I would be different.
I ran into a holistic friend the other day that asked how I was doing. I said, "I am back on meds." She replied, "You really gave it a good try but it is nice to know the drugs are there to help." I felt a sense of relief that she seemed to understand the commitment I have made to dealing with this alternatively but also felt ashamed that I wasn't able to make it work.
Yesterday I read a commencement speech given by Erica Goldson, a valedictorian in New York. It is definitely worth reading if you have any interest in education. She started her speech out with the following story:
There is a story of a young, but earnest Zen student who approached his teacher, and asked the Master, "If I work very hard and diligently, how long will it take for me to find Zen? The Master thought about this, then replied, "Ten years . ."
The student then said, "But what if I work very, very hard and really apply myself to learn fast -- How long then?" Replied the Master, "Well, twenty years." "But, if I really, really work at it, how long then?" asked the student. "Thirty years," replied the Master. "But, I do not understand," said the disappointed student. "At each time that I say I will work harder, you say it will take me longer. Why do you say that?"
Replied the Master, "When you have one eye on the goal, you only have one eye on the path."
As I read this story I realized that since my diagnosis in 2004, I have only had one eye on the path. My sole goal has been to get off medications and stay off medications. There hasn't been any room for anything else. My naturopath realized quickly this high expectation I have placed on myself and asked me to list what I am missing in my life that I would like to change. Hearing my list, she recommended going on medications for now. What I like about her approach with me over the rheumatologist's is to stop thinking of this as a life sentence. Right now my goals are stating that I want a better quality of life and I am emotionally and physically drained from trying to do this without medications. So, think of this as a two year investment in feeling good and doing the things in life I want to be doing because in two years, who knows what other holistic paths I will have discovered that may allow me to reduce or wean off the medications again or perhaps scientists will discover some amazing new research into rheumatoid arthritis. There is hope for my future with rheumatoid arthritis.
This all makes sense and I want to accept it, but I haven't. So, this morning I feel angry and I am sure I will feel angry tomorrow as I go for my appointment. But, the good news is my sister arrives tonight and I will have hours to share these thoughts with her and in her amazing way, she will make me feel better.
Cathy, I am sorry that you are feeling this way. I want to tell you not to be angry but I can’t, considering I go through the same reasons to be angry on a daily basis. We all go through the why me’s and what if’s – it is part of living with chronic illness. What I am going to say is that it is OKAY and you are not alone. If you need to feel angry or sad, you give yourself that time, and we will keep reading sending healing thoughts your way. (((Hugs))).
ReplyDeleteCathy, You know I always admire your ability to express your feelings. I think all of us who read and follow you feel angry and can relate to every thing you write. Sending lots of love to you.
ReplyDelete(((Hugs))) we all go through angry times with our RA. With you being angry that shows you are still fighting it so keep up the fight! Have you tried Biotin for the hair loss? I was losing hair on Synthroid and started Biotin and it really slowed it down a lot! I agree on being angry about paying more for food that is healthier for us....it's frustrating! As far as the meds...you gotta take what helps...simple as that! The goal is to prevent future damage and whatever works to do that then do it :) You are definitely not alone in this fight! <3
ReplyDeleteI can just echo what the others have said - this disease makes us VERY angry at the world sometimes. It's not fair and it's frustrating, even when you do all the 'right things' and it doesn't get better. I really hope the medication helps so you can go back to living your life well and even recommence your bike rides. Like you yourself said, you don't know what will happen in a year or two, we need to focus on enjoying life today!
ReplyDeleteDear Cathy,
ReplyDeleteIt seems we're both having angry and somewhat fearful weeks. You amaze me, though. Just the fact that you've fought like this - that you've found energy to be an amazing mother and wife and still find alternative approaches... it inspires me tremendously. Don't like at this as a defeat - you're right when you say you don't know what options are coming down the pike. None of us do. Right now, you just concentrate on that better quality of life you wrote about because you deserve it. Thank you for this post, as always.
Love,
Maya
It's OK to be angry, to feel angry, and to talk about being angry. It's good that you're able to pinpoint your anger so you can give it a good, honest thinking about. I'm glad you're doing this, Cathy. I'm also envious of your strength, your determination and your self-knowledge. You've worked SO hard on this!
ReplyDeleteThat said, while I understand your feeling angry about not being able to beat your RA naturally, I have to point out that very few people DO beat this disease, naturally or otherwise. The drugs, as hard as they are on our bodies, do at least seem to work more often than natural suppliments. That sucks, I agree. But that's how it is, for now.
I'm sorry you feel ashamed about the natural approach not working for you, though. This is one of those situations, I think, where it's useful to look at the GOOD you got from the attempt and see it all not as a failure, but as a valuable learning experience. For the last two years you've completely changed the way you eat, choosing only the healthiest foods, etc. While doing it might not have sent your RA into remission, it DID make you much healthier and probably much stronger overall. That's no failure. That's success.
And for the record: I, too, have wondered many times about how the chemicals I've been eating, drinking and breathing for most of my life might be connected to my hyperactive autoimmune system. I have a feeling that someday, we'll learn that many of the preservatives and additives we've eaten for a lifetime are actually terrible for our bodies. I hope that science will recognize them sooner rather than later, so the generations to come won't suffer from them.
Live and learn. Be angry. It's all good.
Love you,
Wren
OK let me tell you something. I walked this path and am still doing so as you know. I ended up on strong immune suppressants and got infections that led to lymphoedema (all this is a risk you already know about) so I don't tell you this to freak you out. But, this is how my compromise panned out....I came off the big boy drugs, still take anti-inflamatories, and have damage. I know this is the big thing you want to avoid, and it's the B all and end all to the doctors. But even now I think I'd chose the same path, because I compensate the damage by as much exercise as I can do, and lots of healthy stuff (but get too evangelical about that and it can really do your head in, beleive me). This way I still have to deal with the arthritis, dampened down a bit by the less harmful drugs, my health is boosted by the good stuff and I don't suffer from the side effects and stress caused by the stronger drugs. The arthritis is slowing down, big time,although of course I worry about old age etc. etc. It's a real double edged sword, but you know I wish you well and hope you don't mind me putting my two cents worth in. It's just food for thought xxx
ReplyDeleteWow, Cathy, this is such a great post. I say get it out, and get it all out. You don't have to apologize to anyone. I really hope your appointment went well today. I often drive home in tears after my appointments. They are just downers for me and I always need to release.
ReplyDeleteYou stated so well the struggle to live healthy in this world. It takes such a physical, financial and mental toll. Sometimes, I get so tired of eating well and making everything from scratch. It's exhausting to feed a family all the time, right?! That ashamed feeling you were talking about--kick it to the curb, girlfriend! I am so impressed with your diligence to provide a healthy lifestyle for your family. Bravo! Rheumablog said it so well--"that's success." The fact that you have chosen to fight RA with med.s as well is a bold and brave move. Not something you should feel ashamed about! (Hope you don't mind my two cents.)
Trying to manage my RA without med.s for the last two years, while it has gotten worse, has brought an emotional roller coaster. It has also brought the criticism of friends who judge me for choosing the path I have. When I recently decided that it was time to fight fire with fire with med.s, I didn't even want to share what was going on in my life.
I get the bike partner thing--same here. Pooh. My bikes sit and collect dust in the garage. I'm glad you are able to get out and walk. I think the thing I've missed the most in the past year is being able to take my baby for walks. I'm so sorry for the awful side effects. Praying for you, Cathy. I'm in the same boat with you in regard to giving it everything we could absolutely give it to try and fight this without drugs. : ) But the fight isn't over, right?
I am so happy that my speech gave you insight!
ReplyDelete