Last Friday, July 8th, I had my 3rd Remicade Infusion. It went like a charm, although I may have been a little tired, especially since I slept through most of it! It takes about 3 hours, so I brought lots of stuff to read and listen to... instead I slept.
Weekly, I've been tapering Prednisone and as of today am officially on 30 mg. That's not a lot if you're on a regular course of it, but I still have a lot in my body due to the many days of being on IV and then taking it orally. Tapering off prednisone can be tricky, and anyone on it knows that. I still have moon face, and my worst problem is walking up stairs, or as I think of it the mountain, which is where my computer is. My hips and legs don't have much power. It's a good thing I know yoga moves (I took it 4 years) so I'm able to leverage myself up off the floor. I have always been very flexible and that's reduced; the one most common problem people on Prednisone have is gaining weight, and I don't have that... I've lost weight. I keep wondering if it will sneak on in the night! I've lost enough weight that the people around me have this image of me being very frail. Well, I'm not, just slow, ok? And give me my space, and let me get where I need to go without trying to take over for me! And quit telling me I'm doing too much! I'm so full of joy now, you're only dampening the spirits of someone who is destined for more.
My next step is a visit to a trusted friend's chiropracter. While I've seen chiropractors in the past, they haven't been visits I gained much from. One was like a free x ray then a group consultation in which we all had subluxations. The other was a complementary DC connected to Kaiser, and he really didn't explain anything other than crack my neck as I remember it. I didn't feel any better or worse, but I have to say I was probably 50 pounds heavier then.
This new chiropractor also uses nutrition, which I find to be a bonus, and I believe suggests some supplements. I definitely have some skeletal issues, and he will certainly take into account my gut disease and medications. When I really start taking supplements is still up in the air. Right now it's just probiotics and pretty generic vitamins from Vitamin Cottage. I'm really looking forward to this visit.
Another thing I plan to try next week is Ivengar Yoga, which emphasizes more structural changes to your body (I think). That and a gentle massage with Tina!
My diet for the last several weeks has been glutein and corn free, non dairy, although I do sneak in a bit and use lactaid. I'm trying Feta Cheese, cause what's life without cheese? My 2 downfalls are non dairy coffee creamer with my coffee at breakfast and some Walgreens cherry balls or the extra special treat of candy fruit slices from the kids candy store in the mall. Otherwise I'm pretty strict with what I eat, usually things like nuts, nut butter, eggs, etc. And yeah, I still eat meat but that's getting harder and harder.
So here I am, your favorite gut woman, finding her guts, acknowledging what's in them, an important part of the path. One of my IBD docs did an awesome job of talking to me about the physical aspects of the gut... how the nerves are connected to the vagus nerve which leads right straight up into the brain, the hippocampus, the primordial organ! In other words, our past and current traumas are stored in our bodies, and the gut is a particularly interesting place to have them stored! This dovetails so perfectly with what psychology has been saying lately, that trauma is stored at a cellular level. Interesting stuff.
So I'm listening to my body. If I need rest I rest, if I need sun I go outside and absorb it. If I need space, I do my sitting meditation practice. If I need sleep, I lay my head down. And the other day, when I fell off our retaining wall, in front of my neighbors who helped me up, I tried to go through the pain in my left leg, but after a few seconds, said no I need to take care of this, and went it and iced it. No problems with the knee!
We could all do better at listening to our bodies, I think. Do you? What's it telling you right now?
Tuesday, July 12, 2011
Tuesday, June 28, 2011
The Punkinsoul Path to Heal
In October of 2007, I was diagnosed with an auto immune disease, mild Left Sided Ulcerative Colitis, one of two Inflammatory Bowel Diseases (IBD). The other is Crohns Disease, which effects much more of the digestive tract than UC. At the time, I didn't think much of it, was given a prescription for a drug called Asacol and after a few weeks, thought it really wasn't such a big deal and quit taking the drug.
Little did I know that 3 1/2 years later, I would wind up in the hospital for 16 days to control bleeding from my severely damaged colon. Throughout those years, I became progressively worse physically, emotionally and mentally, becoming virtually a hermit for long periods of time. I tried various medications, probiotics, diet changes, and tried the Specific Carbohydrate Diet for awhile, making my own yogurt and then eating glutein free. But nothing prepared me for the "retreat" I had in the hospital (Good Samaritan Exempla in Lafayette, CO). After the 3rd day, after some major realizations, I understood that every single nurse, nurses aide, food service employees, and housekeeping crew were there because they wanted me to HEAL and help me, so I just let go and let them do their jobs.
In particular, my Kaiser IBD team was beyond any doubt invested in me, and their caring for and about my health, sharing of information and ability to explain my treatment was phenomenal. I can't ever thank them enough. I have some ideas that I believe would help them do their job even better for more people.
Eventually I was released in much better health, on a high dose of Prednisone, which I'm slowly tapering now. In addition, I'm on a program of infusions called Remicade, which seems to be healing me, too.
Following my release, I began to explore alternative therapies as an adjunct to Western Medicine, met with a nutritionist, and had something called a Visceral Massage by a fantastically intuitive massage therapist/healer, Candace. This is a practice that has been used in France and is also taught in Florida. I don't have the academic specifics of the doctors who do the teaching yet, but they are impressive. From a layman's point of view, Visceral Massage is massaging the organs of the body themselves. It may have been the most gentle and relaxing massage I've ever had, yet had phenomenal results. Candace was firm in telling me that I could not have another visceral massage for 3 more weeks, during which time she was going for further training anyway.
My other healer was a nutritionist, who certainly had a lot to deal with all the Western meds in my system... Remicade, which stays in the system several weeks, followed by 16 days of 60 mg IV prednisone followed by anothe week of 60 mg prednisone. I came to her with kind of a toxic soup. She suggested several supplements based on my health history, which I promptly went out and bought at Vitamin Cottage (who has a great reputation with me now, and I hope to interview them soon.) However the clerk was not as well trained as I would have liked, and I ended up with a bit of a mish mash.
I really started to have symptoms from the prednisone... I described myself as feeling like the Tinman from the Wizard of Oz. I got moon face (right during the full moon!) and ankles/kankles. Otherwise, I felt pretty good and shopped in Manitou and old Colorado City, meeting some wonderful people there, too. It was truly a retreat and path to healing.
Then home again, with 2 weeks of walking twice a day with my buddy the Jack Russell Terror Winston! The healing was gradual but I was finally on my way back from hermitage.
Little did I know that 3 1/2 years later, I would wind up in the hospital for 16 days to control bleeding from my severely damaged colon. Throughout those years, I became progressively worse physically, emotionally and mentally, becoming virtually a hermit for long periods of time. I tried various medications, probiotics, diet changes, and tried the Specific Carbohydrate Diet for awhile, making my own yogurt and then eating glutein free. But nothing prepared me for the "retreat" I had in the hospital (Good Samaritan Exempla in Lafayette, CO). After the 3rd day, after some major realizations, I understood that every single nurse, nurses aide, food service employees, and housekeeping crew were there because they wanted me to HEAL and help me, so I just let go and let them do their jobs.
In particular, my Kaiser IBD team was beyond any doubt invested in me, and their caring for and about my health, sharing of information and ability to explain my treatment was phenomenal. I can't ever thank them enough. I have some ideas that I believe would help them do their job even better for more people.
Eventually I was released in much better health, on a high dose of Prednisone, which I'm slowly tapering now. In addition, I'm on a program of infusions called Remicade, which seems to be healing me, too.
Following my release, I began to explore alternative therapies as an adjunct to Western Medicine, met with a nutritionist, and had something called a Visceral Massage by a fantastically intuitive massage therapist/healer, Candace. This is a practice that has been used in France and is also taught in Florida. I don't have the academic specifics of the doctors who do the teaching yet, but they are impressive. From a layman's point of view, Visceral Massage is massaging the organs of the body themselves. It may have been the most gentle and relaxing massage I've ever had, yet had phenomenal results. Candace was firm in telling me that I could not have another visceral massage for 3 more weeks, during which time she was going for further training anyway.
My other healer was a nutritionist, who certainly had a lot to deal with all the Western meds in my system... Remicade, which stays in the system several weeks, followed by 16 days of 60 mg IV prednisone followed by anothe week of 60 mg prednisone. I came to her with kind of a toxic soup. She suggested several supplements based on my health history, which I promptly went out and bought at Vitamin Cottage (who has a great reputation with me now, and I hope to interview them soon.) However the clerk was not as well trained as I would have liked, and I ended up with a bit of a mish mash.
I really started to have symptoms from the prednisone... I described myself as feeling like the Tinman from the Wizard of Oz. I got moon face (right during the full moon!) and ankles/kankles. Otherwise, I felt pretty good and shopped in Manitou and old Colorado City, meeting some wonderful people there, too. It was truly a retreat and path to healing.
Then home again, with 2 weeks of walking twice a day with my buddy the Jack Russell Terror Winston! The healing was gradual but I was finally on my way back from hermitage.
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