With the return of my lupus symptoms during the holiday ‘flare’, I’ve been making a more conscious effort to notice the decisions I make in treating them.
Usually, I only take two medications to manage my lupus and it’s affects on my kidneys. Those two medications are an immunosuppressant CellCept ® and the ACE inhibitor/diuretic brand name Lisinopril . I have been through many more pills and higher dosages over the years, but have been consistent in this current regimen since 2007. In all honesty, there have been some hitches in dosages from time to time. However, I’m fortunate to have a physician who trusts me to be responsible and upfront with him if I really change things up, other than just a missed dosage or two.
I mention my meds because I know that taking pills bothers many of us and that, even though these are the only pills I have to take on a daily basis, I still fight taking them. You may notice that I don’t list supplements and that is because, well, I hate taking pills. I am changing back to my original medication program to include calcium/vitamin D, though. I stopped taking them for about four months to rule out some of the digestive issues I was having and now believe it was the brand, not the supplements themselves, causing the trouble. I’ve just been lax in buying more and starting up again. I DO NOT recommend that you do not taking them, especially if you’re doctor has told you to take them. Please do as I say and not as I do. Listen to your doctor.
As I get back into paying more attention to my lupus and the methods I use to re-connect the dots (so to speak), I see that I practice a great deal of mind-body therapies instinctively. That means, I don’t resist standardized medicine completely or consciously. I merely automatically seek ways to tie together what I think about my health with what my body tells me that I can understand. With kidney disease, we just can’t know all that is going on, because there are very few outward symptoms to notice until things are in really bad shape. With my lupus, though, there are other symptoms that are familiar to me and easy to track. It is still advisable to run them by your doctor, but you may be able to take some steps to address them until your next appointment.
These familiar and less intrusive symptoms are what I focus on when I practice my self-care to help heal the over-board immune response that is my lupus. These symptoms include headaches, fatigue, “brain fog”, heat and swelling in my tendons (ankles and wrists, mostly), eye sensitivity, mouth sores, sun sensitivity, stiffness in my joints, indigestion and so forth. Although sometimes these can be extreme and are then shared immediately with my physician, I have found that I can minimize their impact if I get to dealing with them as soon as I notice them coming on. There are some other non-traditional lupus symptoms, but still seem to be involved in my immune ‘surveillance system’ reacting to threat. Most common include hot flashes/sweats, sleeplessness, confusion, dehydration and appetite changes that I suspect have more to do with the fact that I’m nearing fifty and/or not managing my stress levels effectively.
One of the mind-body ‘therapies’ I use quite often is Autogenicsˡ. In a nutshell, this therapeutic tool is simply using self-guided verbal instructions addressed to specific parts of my body.
Although I sometimes feel like my dog listening to me tell him what to do all the time, there is something about actually hearing me tell myself “Stand up” when I’ve been at the computer too long. I’m not kidding, saying it out loud makes all the difference! Let me clarify that I’m not bullying myself into standing, but simply (and with stern encouragement) motivating myself to practicing some self-care. The reason it is more effective if said out loud, which has been known to create some confusion in social settings, is because we need to get out of our heads sometimes to take ourselves more seriously. Only thinking to myself that I ‘should’ stand can be, and is often, ignored by my stubborn disposition. Besides, “should” is not a word I am particularly fond of nor respond to favorably.
I started with simple ones, such as “sit”, “eat”, “stretch”, “breathe.” I’ve moved up to more specific, but still short-and-sweet, ones like “go to bed”, “drink some water”, “park farther away” and “grab some fruit, not that cookie.”
This really simple tool, and many mind-body therapies are, get me to listen to my gut instinct through practice. Making that connection between serious self-care and recognizing the partnership between what I’m thinking and what I’m doing, has truly helped me address my constant dehydration and develop more consistency in remembering to take my pills. Introducing the supplements again will be my new ‘trick’ to learn and, yes, there will be treats involved.
I’m going through my list of favorite mind-body tools and will post them all next week. Some you may already know about a few of them or maybe you haven’t tried them yet. I encourage you to think about giving at least one a try and to come back here to share your experiences. If you have resources (online or classes) that you have found to be helpful in learning more about any of the techniques I cover, you are more than welcome to send them in and I will include them in the next MLWT Musings e-newsletter.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Source:
1. Maizes, V. & Low Dog, T. (Eds.). (2010). Integrative Women’s Health. New York, NY: Oxford University Press.
