So, over the last couple weeks, I have implemented a few changes. I'll list them later but, suffice to say, the combo is working. I feel more functional, have more energy, good, stable mood, low-level headaches, manageable physical pain, and more cognitive skills than I have had all together at one time, in years. Years. Honestly, I don't know if it will all hit a wall again and in spite of my new changes, I'll find myself feeling pretty limited again or not. For today, I am enjoying life, and I wanted to document and share. So often, I write in report of pain. Today, I write in report of joy.
I am trusting my body again. With less physical pain to interfere with the actions I ask of it, it performs the tasks I want it to perform. Easily. Comfortably.
I feel happy. All The Time. I rarely stop singing.
Yesterday was a test for me because I had a therapy appointment in Dallas. The last time I went on the paratransit bus without a wheelchair was a disaster. It was 2 years ago this month. Those memories have kept me conservative, using my chair for those trips even when I didn't feel like I necessarily needed it. Just wanting to have access to it out in the world in case I did. Not able to trust my body to behave predictably. If I travel under 10 miles or so, I usually use a ride share car. But, most of my doctors are further away than that, and I save my household a lot of money by taking the paratransit bus. Using this service helps me feel like I'm contributing financially. The appointments must be kept, especially my therapist. Anyway, I digress. Yesterday, I went with only my cane. And it was successful. I implemented all the tools at my disposal to keep myself as comfortable as I could be on a fleet vehicle. I used breathing and humor to help me through situations that could have made me hold tension. I arrived there after having a lovely conversation with Stephen, a driver I know well, who had never seen me walk before. Had a lovely session, reporting my positive direction changes and discussing each. The ride home included a wait for 45 minutes, which I did inside the waiting room, since the building has no indoor benches, and the outdoor bench was not a good choice. While I waited during the last 10 minutes or so, I walked up and down the stairs as many times as was comfortable. FitBit says it was 12 floors, so 6 times, I guess. The bus brought me straight home. And I went right into cooking dinner. I didn't need to lay down, to nap, to rest, to recover even, at all. I felt fine. Minimal head pain. I enjoyed the whole evening with Tim and the dogs and Norway. I could get up easily from the couch for all the little reasons that arose. I wasn't uncomfortable. That has never happened before. An outing on my legs was successful.
The courage it took for me to try that was big. Really, really big. Courage comes from knowing you are doing something from which failure will be very uncomfortable, whatever that means to you. I have summoned courage many times in my life. And I'm so pleased I mustered it again yesterday. Now, I have a successful historical experience to draw from as proof that it can be done. It has been done in the past, so it can be repeated. My courage is sound. I am brave. I face stuff. And I'm so proud of myself for it.
I'll list my changes now:
1. Commitment to walking a half-marathon in Novemnber 2019. This decision was inspired entirely by Lara Bloom in London. I began making the decision to try this before the her documentary, Issues With My Tissues was finished. At the end, I decided to go for a half-marathon, and knew that I had well over a year to train myself for it, a totally doable goal. I walk every morning at 4am with my spouse and dogs. I'm not relying on my cane, just carrying it, except for one random armadillo vs dogs moment. I've learned to take extra salt the night before, to take care of my plantar fascia, to salt again before I leave the house, to wear my ice hat and Frogg Towel while I walk, and to TRUST myself. I have a FitBit which shows my data. And I love doing this. I pop up out of bed at 3:50am to stretch for a few minutes and get my gear on and leash dogs while T readies himself. Then we walk. And I love it. Being up that early is fabulous. My day is reinvigorated. My body is active again!!
2. THIS MIGHT BE TOO MUCH PERSONAL INFORMATION FOR SOME: After the first sentence, you'll know whether or not you need to skip to 3.
I do coffee enemas twice a day. 8am and 8pm. For a while, I don't have a goal in mind, I am taking the workload off my colon. This has minimized my migraines even more than the chiropractic work. I can reliably do ce and bring a headache down 2 notches on the pain scale. I have been able to do this day after day after day. Reliably. And the energy I feel because of the detoxing is unbelievable. My level of energy might be what it would be if I didn't have chronic illness. And because of the detox of my hepatic vein, and the additional salt in my blood, I can THINK. I didn't know the secondary effect of doing this was that my physical pain would be treated. I am doing very well on that front, too. I am walking, confidently. I am going on outings without my cane. I only brace my knees, recently. My body feels fairly decent, much of the time. Cancer patients very often turn to ce as the treatment for pain and toxin removal.
3. I have omitted 3 things from my nutrition. I took a food sensitivity test, and it came back showing a severe sensitivity for a few things I never eat. But tea was on the list. So, it's gone. Beef was on the list of moderate reaction. Beef, gone. I have had it a couple times and on both instances, I didn't feel as well as I might have afterward. And HFCS, which we all should avoid, shows as highly reactive for me. I'd been drinking G2, diluted and salted as my main hydration throughout my days. That is out. Now I have a sugar-free, chemical free option.
4. Increased salt intake. I was taking 4 g salt tablets daily, in addition to what I put in my drinks and on my food. That is what was originally recommended for me last year by my nutritionist. I need more. So, I slowly increased. Now, I'm up to 7g a day, which is still below the 8-10 g POTS patients usually are told to have. I feel such improved mental clarity. I know it's because of the salt. I don't retain it. I must consume an excessive amount for my body to function. And the more active I am, the more I walk and sweat, the more I will need to consume.
So, my symptoms are all at a simmer, rather than a roiling boil. Headaches are cooking at a heat a bit above simmer, but still are letting me get on top of them with my various treatments, and have a functional life. Physical pain is quite low. Depression and anxiety are non-issues. I stopped Botox treatments when CE turned out to be effective and reliable for me. I see good things all around.
I am just grateful for my COURAGE to try these changes.
Feel well and happy,
Marie
I am trusting my body again. With less physical pain to interfere with the actions I ask of it, it performs the tasks I want it to perform. Easily. Comfortably.
I feel happy. All The Time. I rarely stop singing.
Yesterday was a test for me because I had a therapy appointment in Dallas. The last time I went on the paratransit bus without a wheelchair was a disaster. It was 2 years ago this month. Those memories have kept me conservative, using my chair for those trips even when I didn't feel like I necessarily needed it. Just wanting to have access to it out in the world in case I did. Not able to trust my body to behave predictably. If I travel under 10 miles or so, I usually use a ride share car. But, most of my doctors are further away than that, and I save my household a lot of money by taking the paratransit bus. Using this service helps me feel like I'm contributing financially. The appointments must be kept, especially my therapist. Anyway, I digress. Yesterday, I went with only my cane. And it was successful. I implemented all the tools at my disposal to keep myself as comfortable as I could be on a fleet vehicle. I used breathing and humor to help me through situations that could have made me hold tension. I arrived there after having a lovely conversation with Stephen, a driver I know well, who had never seen me walk before. Had a lovely session, reporting my positive direction changes and discussing each. The ride home included a wait for 45 minutes, which I did inside the waiting room, since the building has no indoor benches, and the outdoor bench was not a good choice. While I waited during the last 10 minutes or so, I walked up and down the stairs as many times as was comfortable. FitBit says it was 12 floors, so 6 times, I guess. The bus brought me straight home. And I went right into cooking dinner. I didn't need to lay down, to nap, to rest, to recover even, at all. I felt fine. Minimal head pain. I enjoyed the whole evening with Tim and the dogs and Norway. I could get up easily from the couch for all the little reasons that arose. I wasn't uncomfortable. That has never happened before. An outing on my legs was successful.
The courage it took for me to try that was big. Really, really big. Courage comes from knowing you are doing something from which failure will be very uncomfortable, whatever that means to you. I have summoned courage many times in my life. And I'm so pleased I mustered it again yesterday. Now, I have a successful historical experience to draw from as proof that it can be done. It has been done in the past, so it can be repeated. My courage is sound. I am brave. I face stuff. And I'm so proud of myself for it.
I'll list my changes now:
1. Commitment to walking a half-marathon in Novemnber 2019. This decision was inspired entirely by Lara Bloom in London. I began making the decision to try this before the her documentary, Issues With My Tissues was finished. At the end, I decided to go for a half-marathon, and knew that I had well over a year to train myself for it, a totally doable goal. I walk every morning at 4am with my spouse and dogs. I'm not relying on my cane, just carrying it, except for one random armadillo vs dogs moment. I've learned to take extra salt the night before, to take care of my plantar fascia, to salt again before I leave the house, to wear my ice hat and Frogg Towel while I walk, and to TRUST myself. I have a FitBit which shows my data. And I love doing this. I pop up out of bed at 3:50am to stretch for a few minutes and get my gear on and leash dogs while T readies himself. Then we walk. And I love it. Being up that early is fabulous. My day is reinvigorated. My body is active again!!
2. THIS MIGHT BE TOO MUCH PERSONAL INFORMATION FOR SOME: After the first sentence, you'll know whether or not you need to skip to 3.
I do coffee enemas twice a day. 8am and 8pm. For a while, I don't have a goal in mind, I am taking the workload off my colon. This has minimized my migraines even more than the chiropractic work. I can reliably do ce and bring a headache down 2 notches on the pain scale. I have been able to do this day after day after day. Reliably. And the energy I feel because of the detoxing is unbelievable. My level of energy might be what it would be if I didn't have chronic illness. And because of the detox of my hepatic vein, and the additional salt in my blood, I can THINK. I didn't know the secondary effect of doing this was that my physical pain would be treated. I am doing very well on that front, too. I am walking, confidently. I am going on outings without my cane. I only brace my knees, recently. My body feels fairly decent, much of the time. Cancer patients very often turn to ce as the treatment for pain and toxin removal.
3. I have omitted 3 things from my nutrition. I took a food sensitivity test, and it came back showing a severe sensitivity for a few things I never eat. But tea was on the list. So, it's gone. Beef was on the list of moderate reaction. Beef, gone. I have had it a couple times and on both instances, I didn't feel as well as I might have afterward. And HFCS, which we all should avoid, shows as highly reactive for me. I'd been drinking G2, diluted and salted as my main hydration throughout my days. That is out. Now I have a sugar-free, chemical free option.
4. Increased salt intake. I was taking 4 g salt tablets daily, in addition to what I put in my drinks and on my food. That is what was originally recommended for me last year by my nutritionist. I need more. So, I slowly increased. Now, I'm up to 7g a day, which is still below the 8-10 g POTS patients usually are told to have. I feel such improved mental clarity. I know it's because of the salt. I don't retain it. I must consume an excessive amount for my body to function. And the more active I am, the more I walk and sweat, the more I will need to consume.
So, my symptoms are all at a simmer, rather than a roiling boil. Headaches are cooking at a heat a bit above simmer, but still are letting me get on top of them with my various treatments, and have a functional life. Physical pain is quite low. Depression and anxiety are non-issues. I stopped Botox treatments when CE turned out to be effective and reliable for me. I see good things all around.
I am just grateful for my COURAGE to try these changes.
Feel well and happy,
Marie
I am so encouraged by your progress, Marie. I am really happy to hear that you are feeling better. I have made a few life changes, recently, as well. When we first moved I was in such a state that I truly told Stan "Maybe I'll even open the garage door". We keep my car in the garage and rarely drive it because it's a high performance vehicle and needs premium gas. He said that we can store it, just remember to go out and start it every couple of days. I hate virtually every single minute of every single day I am in Kokomo. It got to the point of near immobility. It still does, sometimes. Some days I count my blessings, I have a wonderful husband, 2 great sons, a job I do from home, a roof over my head and food on the table. Other days I can't stop thinking "These things would be so much better if I lived back home" (as in Hamilton County). I had to make a change. I still hate Kokomo. I will never get over that, but I have done some things that make it more tolerable. I joined a gym. AJ and I go together to keep each other accountable. I have already lost 2 lbs (working toward 30, which would give me a grand total of 85 start to finish). I had to go on a "no refined sugar" diet at the advice of the breast doctor (that's the tough one), and 2 weeks ago, for my birthday, I did something I've wanted to do for 30+ years. With the encouragement of my husband, and the okay from my doctors, I got a tattoo. It's not a butterfly tramp stamp that will turn into a pterodactyl when I'm 60. It's an open shamrock with a purple rose growing inside. It's on my ankle and can easily be covered up for job interviews or anything formal. The shamrock represents my beloved grandpa and our Irish heritage. The rose represents Daddy, Grandma and my brother, Scotty, who have all passed. Daddy had a rose tattoo as a nod to his mom who loved roses and had the most beautiful rose garden. Her favorite was the blood red American Beauty (that's where the red in the rose comes from). My brother's favorite color was blue (that's where the blue in the rose comes from). I am really proud of it. I love showing it off, and Stan thinks it's kind of sexy (I know, TMI, but I'm 48 and things are sagging where I don't want them to).
ReplyDeleteI pray for you and Tim every night, always. When I see posts like this one, my heart fills with utter joy. I pray you have more better days.
Love and Hugs, Always.