I feel like I am at a crossroads in regards to my health, nutrition, and exercise lately. Merriam-Webster dictionary defines the word crossroads as: a crucial point, especially where a decision must be made. I am not certain that my decisions are necessarily crucial but you get the point.
Over the past two months I have slowly been weaning off my prednisone which was at very high doses to begin with between the oral tablets I was taking and the IV infusions. I finally came off of it three days ago. I knew it was going to be difficult. Historically I come off prednisone for a while and then ultimately go back on it at varying doses because my symptoms return. However this time I am determined to stay off of it for as long as I can unless I am in a very bad or urgent situation such as literally not being able to walk or if I am having extreme difficulty breathing. The reason I feel so strongly about staying off the prednisone is because I am forty-one years old and I believe that my doctor and I need to try another course of treatment. The risk of long term side efefects is high. Not to mention the ones I have to live with when on the medication. It is a toss up most of the time as to what is worse: the disease or the treatment. At this point, it has become a quality of life issue.
But I am in a lot of pain. The joint pain that notoriously feels like someone is driving a chisel into my bones. It is not the worst pain I have ever had but it is pervasive and it is starting to affect my daily life again. I know that if I call my rheumatologist, she will immediately put me back on the prednisone and I just can’t do that to myself again right now. Also, the adrenal gland gets shut off when you are on prednisone and they need time to work on their own again. While this rebalance is taking place, it is common to have symptoms like joint pain. I am hoping that this is all this pain issue is: a response to coming off the prednisone.
I am also at a crossroads with my exercise program. While I was on the prednisone, I was able to do a lot more than I can now. At this point, I cannot even swim without being in significant pain afterwards. And this upsets me. I have come to rely heavily on regular exercise to not only manage my weight but also my emotional well being. I am currently reevaluating the exercise program I have put in place to see how I can work it so that I can still exercise without paying such a heavy price afterwards. It is difficult though when I have made so much progress over the past two months in regards to my fitness level. All I want to do is keep going forward, not backwards.
The final issue to my diet. I have been working so hard on changing my lifestyle over the past six months and my dietary changes have been drastic. And now I am ticked off. Why? Because I have busted my butt for the past five to six months eliminating all gluten and dairy from my diet. I have drastically eliminated sugar as well. I did these things because it has been shown that gluten, dairy, and sugar can contribute to inflammation. I have sacrificed a lot to make this eating plan work for me and yet as I sit here typing, the joints in fingers are swollen and painful. I know I may be jumping the gun a bit because once my body chemistry evens out, maybe the pain will be better. But it is hard to not be discouraged when I had a lot of hope placed on my dietary changes making a huge difference in my illness. Not to say that it won’t but time will have to tell on that issue.
So what do I do now? Do I give up my gluten and dairy free diet? Do I let myself start having sugary dessert more often? Do I just sit back and use my pain as an excuse to not exercise as often or even at all? Most importantly, do I go back to my medicine cabinet and give in to the pain; knowing that relief may just be as easy as a 10mg tablet of prednisone?
Hell no.
Here is what I am going to do instead. I am going to go to acupuncture more frequently. I will keep reading and learning about pain management techniques and use them as much as possible. I will eat even healthier than I already have been. I will use regular pain medicine when I need to give my body a break from the pain. And I will still exercise. I am not quite sure how but I am resourceful. I will figure it out.
The most important thing I will do is….
Not give in.
I will fight to be stronger than this current flare up of pain. I will not use my illness as an excuse to eat crap or be a couch potato twenty-four hours a day. However, I will also be kind and gentle to my body in whatever ways it need me to be. I will have faith that this too shall pass. One day and one hour at a time.
Photo Courtesy of: Image Crossroads (C) by www.martin-liebermann.de
Oh Chris, you know I've been in your shoes. It is so easy to feel discouraged when it seems like we're doing everything right yet still feel sick. As I was reading your blog I realized that our 'invisible illnesses' aren't so invisible sometimes. We have swelling, bloating, sweats, flushing, weight fluctuations and on and on. On top of it all, we have to fight every day to have our disease (S-j-o-g-r-e-n-'-s)recognized as existing. I find the balance I need is between not giving up and doing what I can with accepting that certain symptoms will come and go as they please. I'll be right here beside you all the way – trying new diets, meds, and whatever else it takes. You are fighting the good fight.
It is so difficult to tell if diet helps out or not. There are many so called experts out there. My wife believes that there is something out there that will help my Sjogren's and has put me on all types of diets. I am off gluten and dairy, and antiinflammatory diet as well. I no longer enjoy eating as their is nothing I can eat. Now she wants to cut out all sugar including most fruits for awhile to see if it helps my nerve pain. I do believe going gluten and dairy free has helped with stomach issues . I think it might have helped with joint pain, but the nerve pain has drowned that out. But I am just not sure anymore. I am really not looking forward to going without sugar. I do not like these deprivation diets. My thought is, if there was a diet that really helped autoimmune diseases, don't you think all of our rheumies would put us on it??
Good for you! You can do this!!
Thank you! 🙂
LOL about S-j-o-g-r-e-n-'-s!! I know you will be by my side throughout this journey and thank you! Your support and friendship is an incredibly important part of my life!
I see your point about the diet issue. I think the first problem is that western doctors, for the most part, do not care about nutrition. Of all the zillion docs I have been to, no one has EVER mentioned diet/nutrition to me whether for the Sjogren's or for anything else. That is sad.
The other problem is that nobody does any controlled studies on the effects of certain types of eating because there is no money in it. Even sadder.
Some advice on the sugar thing: don't go cold turkey. You will be miserable. I have not completely eliminated sugar from my diet and therefore I do not see it as deprivation. But I have reduced my consumption by maybe 75%, not including fruits.