What medications are you taking?
It has taken us years to find medications that keep me somewhat balanced. I have been on an off numerous medications trying to figure out what works and what does not. At times, I need to take a specific medication for a designated time period and then not at all. These trials continue as new medications become available and as we learn more about my body.
What I think is most important to consider is that although we all have DIGITS, each one of us, our symptoms, and needs are unique. Medications I am take may not be fitting for someone else. I cannot tell you what medication works for me, may be a success for you. We are fortunate to have a doctor who takes into account each of our needs and responds to our needs, opposed to a generic formula for all of us.
This is not to say I am not willing to share my personal experiences with medications, treatments, and surgeries that I have had, but our care plan is best in the hands of the experts.
This is a challenging question to answer. Prior to being diagnosed with DIGITS, I was on an extremely high dosage of narcotic medication. As time went on, my tolerance and dosage continued to increase. By the time I met Dr. Taylor, he could not determine what was either an illness or side effects from the high dosage of narcotics. In order to see what was happening, I was taken off all the narcotic pain medications I was on. That experience was awful and frightening at the same time. We soon found out it was not the narcotics and I needed to be on TPN and have surgery.
From my experiences from all of the narcotics I have had in the past, my allergies, and back surgery, it remains extremely difficult to find a safe dosage to control my pain after I have any invasive treatment and surgery (and I have had many).
I learned at a young age how intrusive some medications can be despite helping with pain control. I have since been very careful about using narcotic medications and have had to be as only extremely high dosages seem to work for me. With that being said, I also find it very hard to function on narcotics and doing any other type of activity is practically impossible for me. This is definitely not to say that there are times when I have needed to use these medications because we all know how important pain management is with this illness. Yes, there are times when I am in need of narcotics to keep my pain and spasms under control and to find some relief.
I still needed help for day-to-day living with DIGITS and decided I wanted to find help for my symptoms and pain management that went beyond medication. Over the years I have tried: chiropractic’s, acupuncture, acupressure, therapy, osteopath, naturopath, walking, reiki, yoga, and meditation. What I have found for me is that walking, yoga, meditation, and reiki are the practices that have aided me the most. What has been most helpful with each of these inclusions in my life is each one makes me feel that I am doing something to make me feel better. I need to know that I am trying my best and that I am active in my healing. I also have needed to accept that I have DIGITS and each of these practices have helped me come to terms with living with DIGITS.
Walking has been a staple for me in helping with DIGITS. I find it helps keep my bowels moving and relaxes me. I go for walks a couple of times each day and find a huge difference in how I feel. When I do not go for a walk, I find Oscar struggles a lot more. The walks do not need to be a huge distance; I usually just go by how I feel. Dr. Taylor suggested walking as an aid when I first was diagnosed with DIGITS and I am very grateful for the strategy.
I am definitely not saying that each one of these practices is helpful for everyone. You need to find what works for you and your body. But what I love about meditation, yoga, and reiki are each one is very simple to engage in. I can do any of these with very little energy, without movement, anywhere, anytime.
Over the next couple of weeks, I will be posting specifically on meditation, yoga, and reiki and how each has helped me with DIGITS.
Dealing with DIGITS mentally is definitely a feat. Honestly, one day at a time has been really most helpful for me. Over the years I have been struggling with DIGITS, I do believe I have improved but new obstacles continue to rise as time goes on. I continue to encounter further symptoms of DIGITS and as my life changes. In the past I did see a psychologist and I found that was profoundly helpful. Not only was I provided with someone who would listen but she taught me a lot about self-healing. From attending therapy I was exposed to many strategies through books, yoga, and mediation. These sessions helped foster a journey of self-discovery that I continue to embark on.
I don’t have a perfect solution for the mental effects of DIGITS. I wish I did. I still have bad days but what I do is set small realistic goals for myself. It is when I make a huge list and think I am invincible that disappointment and further complications follow. I also have to appreciate that even though I may have something in mind that it might not work out that day, for a few days or not at all depending on my body.
What I find most difficult mentally about living with DIGITS is being honest with myself and others about what are realistic expectations for me. I am extremely self-conscious about say no and worry people will not think I am strong enough or trying hard enough. I have also realized on the time I have had off is I need to first figure out what works for me and then go back and add things in that work. I need to stop agreeing to things that do not work. For example, a few weeks ago we had the DIGITS support group meeting; I had my mom’s surprise birthday party, and the following day a get together with friends. I thought to myself prior to this it is only 3 days; I can do it. Well those 3 days knocked me on my butt for about 2 weeks. My body was completely out of whack, my symptoms were crazy, and I felt awful. The lesson I continue to struggle with is I still need to be more careful. The progress I am trying to make with time off does not work if I engage in unrealistic
expectations both mentally and physically about my body.
I still struggle with the mental obstacles of living with an illness and truly find that some days are better than others. Some days I feel I can do it, I can live with DIGITS and other days I feel living with DIGITS is simply too much. I said this at our support group meeting that really it comes down to being okay that I have DIGITS. And it is okay, it is not easy and it is not something I would wish on my worst enemy but we are worth it and living with DIGITS does not make us any less of a person.
I hope my responses to your questions are helpful.
I look forward to continuing to hear from you.