Graduation day from Bootcamp has come. I did GREAT! Today’s marked the final episode, the 42nd day of the series – and I am beyond chuffed. I am down 7 pounds, and I feel like I’ve hit my stride with the healthier eating plan, exercise, meditation, and other aspects of my lifestyle change. My jeans and undies are baggy – isn’t that awesome?!? Yes, yes it is. There has to be some pay-off for hiking the enormous hills around here. I think my breathing is less labored, too. That was the hope. The non-CF bronchiectasis phlegm-iness will never get better, in fact that seems to be increasing. Allergies? Higher humidity? Worsening of the disease? I don’t know… all I know is I will keep on trying to increase my lung capacity and stamina as long and as hard as I can, while feeding and healing my body.
In other exciting news, my daughter and her husband will be here tomorrow on their way down to Sarasota. They’ve been planning their Florida move for years, and this year’s the year! They will look around Sarasota to see if the area clicks with them. Then they’ll be back to MaidenShade cottage to visit and work for a few days. After that we are all going to the Orlando area (where I think they belong) to check out the areas in and around that locale. They love cruises, the theme parks, neighborhoods – everything that is around Orlando. Either direction is about and hour and a half from us, so distance isn’t what forms my opinion, they would just be a good fit Orlando way.
My son and my two littlest grand-girls are coming at the end of April so we are really looking forward to that visit, too. I am so grateful we have such a great space for people. We have our little guest cottage, an above ground pool, a hot tub, and fun places to visit within a reasonable distance. Our kitties are fun for them, and the chickens offer enrichment as well as eggs. Blessed, so very blessed!
The never-ending Shady Nook renovation story marches on, too. Our garage slab is FINALLY done, so the steel building can now be put on it. Hopefully that will be this coming week. The driveway is now slated to be paved, and the screen porch off the cottage is now able to move forward because an engineer certified it this morning. Our renovation and addition plans for the main house are being finalized, and we are meeting with our contractor this week to go over finishes for pricing our project purposes. Good thing this guy specializes in kitchens, because our stove died this week and one side of our fridge’s freezer died, too. Suddenly we need appliances! Last but not least, I can now schedule my next round of doctor visits at the Mayo. Whew. That’s a LOT of stuff happening.
The last few days have been busy. That meant I had to choose between writing or doing. Doing won.
My daughter and her husband are coming to visit, and they have never been here. That means getting our partially packed house in order and getting rid of all of the boxes I had saved to continue the job. They were stacked EVERYWHERE. That was a huge endeavor. There was much moving around of stuff to make our tiny house and our tiny cottage a bit less cluttered (this is where guests stay and we will be living when our gut job/remodeling starts). So much more was involved.
I painted some really blue dressers (I am using temporarily) so they didn’t clash quite so much with the rest of hodge-podge furniture in the room. I’m waiting for some new knobs, then I’ll take a picture and add it below. I also painted an old vintage hutch top that was left at one of our houses that I used to use as a display piece. In spite of a happy accident with the color, it turned out SOOOOO cute, but stenciling that backboard was a beee-otch! A really cute bench I painted a few months back, sold this weekend, too. I loved that thing, but we have no room for it.
I had a baby shower coming up and so I went for a shopping day with my sister. She has officially ruined me by introducing me to Home Goods. OMG, I love that place! We also got a bit of Christmas shopping done at Michael’s where doo-dads and thing-a-maggigies for little grand-naughties were 80% off. I couldn’t resist! Driving is apparently on my “do not attempt or you’ll be sorry” list. Why? Doing it made my back go out yet again… not a week goes by without it doing that!
But through it all I was faithful to my routine. I only rested one day from exercising, but I did meditation and breathing work that day. Since talking to my doctor, I started using a tiny bit of salt on particularly tasteless things, but I am still being careful. I keep my food journal with as close as I can get amounts of sodium (just to keep an awareness of my intake) and calories. My calories are always around 1100 to under 1500 a day. I am slowly losing, I mean super slowly.
Also affecting my writing was a heavy heart. I do give things to the Lord, but sometimes it overwhelms me. Our family has had lots of loss and/or illness in the last couple of years. We all were emotionally rocked with my mom’s illness and unexpected death, then my brother’s, then my dad’s younger brother, my uncle.
My son’s partner has been suffering for years from complications related to her autoimmune disease, scleroderma. More recently (even though she was declining and couldn’t even fly anymore) they have been driving back and forth across the country trying to find out wtf is wrong. Test after test, doctor after doctor – and all the while her breathing has become more and more compromised, she’s been on increasing amounts of oxygen and trying to get on transplant lists. It’s been brutal. Then my diagnosis of Pulmonary Hypertension which came just weeks after hers.
Dad was diagnosed with Merkle Cell skin cancer. He is to undergo a very invasive surgery, then cancer treatments. At 92 they will attempt to remove the big tumor from his arm and lymph nodes from the surrounding area. How can that be worth it, when his quality of life will suffer so? He’s been so, so amazingly healthy for his age. Now I’m afraid his remaining time will be spent in recovery and treatment, both severely compromising his quality of life.
Oh there’s more, but that is enough. It has been one blow after another, and we are all suffering from a kind of PTSD, wincing every time another horrible thing gets revealed. We all are just over it already – STOP IT! But God has been with us, we’ve leaned on him and he makes it bearable. Just.
My point with all of that is that I am so proud of myself to have kept going in spite of obstacles, physical and emotional. I encourage you to find support and create an action plan for yourself. Maybe it will be something like Pulmonary Wellness’s Dr. Noah and Bootcamp. It could be a program at a gym, church, or a FB group – or make one up. Doing something took my focus off of the negative, and put it and my energy into healing.
I feel that kind of Sjogren’s tired that tells me to fall over on my bed and just close my eyes. I wonder if I’m just hungry? I did a little Qigong with Brian, but it was so relaxing and sleepy. I’ll have to go eat some lunch, rest a bit, and then go for a walk. I have this horrible fear of allowing my exercise and eating practices to roll back.
Have you heard of the Spoon Theory? The idea is that everything you do in a day requires energy. That energy is represented by spoons. A “healthy” person has an unlimited supply of spoons to get through their day. But people with health issues have a limited supply of spoons.
If you only had 12 spoons to get through your day, how would you spend them? And sure, you may be able to borrow against tomorrow’s spoons for an activity today, but where does that leave you tomorrow?
This can be a great tool for explaining to others why you either can’t or choose not to do things that you may have once done. What do you think? Does this sound like what you experience?
It’s a variety of conditions, mostly related to Sjogren’s ravaging my body.
It’s not PH, so what is it?
I’m going to start this by letting you know I am changing the by-line. It makes sense. It is no longer a journey through Pulmonary Hypertension, is it? No, it’s really just a journey through my life.
If life equates my illness, it’s a journey through Sjogren’s Syndrome, because that is what is driving all of my illnesses, really. But because this latest diagnosis affects the breath – and that is essential to life – that seemed to be the focus this last month. But I don’t want my illness to be my focus, it throws one out of balance to become nothing more than your ailments. More on that in an earlier post.
Here’s a list of what my Mayo Doctor came up with. It isn’t everything, but rather what he is focusing on in my immediate care.
#1 Bronchiolitis (Cylindrical Bronchiectasis). Irreversible thickening, widening, and inflammation of the bronchioles. For me, it is a result of Sjogren’s, exacerbated by GERD (acid getting into my lungs and causing damage). There is no treatment for it, no cure, and it is progressive. Evaluation in 1 year to watch for that progression. #2 Sjogren’s (Sicca) Syndrome (HCC) #3 HypertensiveChronic Kidney Disease (CKD), Stage 3a Glomerular Filtration Rate (GFR) 45 To 59 (HCC) #4 Obstructive Sleep Apnea. Getting an evaluation from a Mayo sleep medicine doctor. #5 Gastroesophageal Reflux Disease. Going to a Mayo gastrointestinal doctor to get GERD under control and for the strictures etc. #6 Gammopathy Monoclonal Nonspecific. This pattern is suggestive of acute inflammation; however, the presence of a monoclonal protein cannot be ruled out (can lead to various cancers, kidney lesions…). Recheck bloodwork in 6 months. #7 Back Pain, Chronic. I’m going to a Mayo physical doctor for my back.
That’s it in a nutshell. There’s still no cure or restoration, it still progresses – but maybe it’s not as deadly? I don’t know. I was hoping for “it’s nothing”, but knew it was something. I have damage to my lungs, kidneys and my blood is whacked, among other things. But it’s great news, wonderful news. I can keep exercising (especially if they can get my back stabilized so it doesn’t go out every week…), eating healthy foods and staving off further damage. In Jesus’ name, AMEN.
I have to say, I am surprised. 🙀 Losing weight is on purpose, of course. I’m downright obsessed with keeping track of calories and sodium. I keep a log and write down every morsel that passes through my lips.
But except for the loss of salt🧂 enhancing my food’s flavor, I don’t feel deprived or starved. If I am hungrier, I eat more. I eat approximately 11 low sodium potato chips with a sandwich or wrap instead of as many as I can. I cut out all deserts or sweets, but for the rare occasion. I don’t add salt to meals I cook, and choose lower sodium options to replace ingredients, condiments, and table salt. But if that steak is crying for a titch, I sprinkle sparingly. I am avoiding, but not religiously, wheat. I’ve increased veggie intake by a lot. I probably eat 4-7 cups a day. It depends. My morning smoothie alone has about two cups of crushed, raw vegetables. Plus about a cup of fruit. That’s instant raw vitamin power there!
The biggest thing that has contributed to my couple of pounds loss has to be my exercise routine. I do take rest days, probably 1 per week or 10 days. But with the support of Bootcamp, Dr. Noah, and David I feel really great about this. One day when it’s not ugly out, I will do a video of our woods and hills. You’ll see why I am so impressed with myself. 😉
There are a few things you really have to watch out for if you have a chronic disease. One is over doing it. I’ve got that one down. The other is allowing that disease to be your entire focus, which narrows and restricts you. It is something I intend to change my mindset from, to one of living life and loving God to the fullest.
“You can become your disease unless you resist it” – Dr. Noah Greenspan
“Make sure you are using the right tools, materials, and are operating out of the right paradigm.”
The Right Tools: 1. Eating 2. Exercise 3. Meditation 4. Prevention of infection 5. Medical (care team and medication) From Thoughts and Motivation Bootcamp Day 26
Notes from: Thoughts and Motivation Bootcamp Day 26
“You can become your disease unless you resist it”
I started out good watching Dr. Noah on Bootcamp (Day 25) and joining in on one of his “FB Lives”. But the day never warmed up above a drizzly 55 with a sullen, unrelenting cloud cover. I need sun to recharge my batteries, to give me impetus.
By 10 a.m. I was drained, my energy spark doused under the dreary grey day. As it grew to mid-day, and Dr. Noah signed off, I realized how cold I was, and could not get warm.
Maybe it has something to do with my low pulse rate and low blood pressure. I guess it could be my Sjogren’s. It’s not because I don’t have fat on me, I’m well insulated. I waited in chilly anticipation for years for hot flashes to warm me up, but no such luck. All I got from menopause was a constant migraine and a strange urge to sew vintage wall hangings.
1 p.m. found me under my covers with my heated mattress pad thingy up to level 3 with the heat booster on. (David got it for me for my birthday.) By 3:00 my one foot and leg were still cold to the touch even though I was set on bake under covers and laying on top of my electric hot pad. Yesterday at this time I was out for a 30 minute hike in the sun. Today, hibernation continues at 4, 5, 6:00 – until I fall asleep.
I feel like one of those iguanas in Naples that falls off a tree limb, frozen from the cold. What is wrong with me? It’s amazing I survived growing up in Minnesota.
I always did hate the cold there though. In late summer I’d start writing dark prose about “July, it is the beginning of the end, the flowers are beginning their descent into the icy grip of winter”… I could see the signs in the dying leaves and I dreaded the inevitable grey, cold, desolation that was coming. 6 months of inescapable sub-zero freezing and dark.
Then one happy late Fall day in 1999 I moved to the Sunshine State 🌞. When it’s cold here, I just fall off my branch and wait for the sun to reappear to thaw me out.
“All I got from menopause was a constant migraine and a strange urge to sew vintage wall hangings.”
I wanted to make sure and give a shout-out to Jax Country WSOS, 94.1. They played the best country I’ve heard in over 30 years, at least. I quit listening to country all of those years ago, because it quit being country about that time… or sooner really. I sincerely wish I could get that station in this area.
So, Jax Country: Hey Y’all are doing a great job playing REAL country, and I want to say “thank you” for touching those reminiscing threads in my heart!
I have a question, and Jax-ites, I’m sorry in advance if I offend you, but I really want to know.
Does that general area by the coast and in towards the Mayo… smell … to anyone else? I mean like the sulphurous gases of hundreds of leaking septic tanks kind of a stench? It coated my nose and made me not want to breathe through my mouth. Or at all.
In the hotel I even cast dispersions at David for what he’d obviously done in the bathroom. But then we went out into the hall and the sewer smell was there, too. It was, in fact, inescapable.
“Low tide,” David said, as we jumped into the car, me holding my breath. But we’ve lived in and around that before down in the Bonita Springs/Naples/Ft. Myers area, it was nothing like this.
“GAH! I could never live here! Why’d they build on a tidal plain swamp?” I said, suddenly wishing I did need oxygen. That mask would’ve come in handy, just sayin’.
Dropped off the equipment at the Mayo, and now we are on our way home. This was the best doctor experience I have ever had. I am so grateful for God’s hand throughout the entire process and for each of my loved ones who upheld us in prayer and sent positive vibrations our way. I’ll update my blog with details once I get home and back to my computer.
Many thanks to sister Kathy, who came every day to sit with our furry babies. We love you and appreciate your sacrifice, Auntie!
PS: I’m sorry for your war wounds suffered at the hands of the attack cat… but the danger is clearly posted in the window.
It is TWOSday. 2.2.22, Tuesday, and Mayo, Day 2. It’s worth repeating that God’s grace is evidenced in this entire journey. I can’t tell you how astounding it is to see his hand in the details. This morning, once again, he helped me.
We arrived early, as suggested. I asked to be put on standby, and registered early for my 8:45 appointment. I barely had time to finish my smoothie, when I was called back early for picking up the oximeter. The nurse explained how it worked, and told me she’d gotten me a 10 appointment for the exercise test!!! I was so happy. She said I could leave and come back, if I wanted. I told her I would stay and wait. Not 10 minutes went by and I was called back AGAIN! This nurse explained a patient was running late, so she was going to get me in quick.
I had thought the “exercise” was going to be a treadmill test, which I’ve done before. Nope. It was something called “Shape” (me in my deafness thought she’d said, “shake”, lol. Oh the visuals…). This entailed putting heart monitor leads on and a diver-like mouthpiece in and getting your nose plugged. The next 8 minutes were spent in not swallowing or being able to burp (smoothie, remember?) because I couldn’t figure out how without blowing my eardrums out. It wasn’t pleasant. Anyway, then you step up and down at varying speeds for about a minute each time. Like with my walk test, my heartrate and pulse were very impressive. I’m sure my breath intake and output was, too. Yay me for hiking up and down our enormous hills and building up my stamina!
I was hoping I’d get in at all, and we were done by 8:15. OMGOSH! So we went to breakfast. David found a great place called The Broken Egg Too, or 2, or Two – it’s Twosday, so of course he did, 🙂 They have really cute mugs, and healthier food alternatives. I ate like a pig. I think I was so relieved to have gotten that last test scheduled and done that I gave in to just eating. Yes, there was salt, but still well within the limits. I had chicken sausages, 2 eggs, 1 toast, 1 butter, and a few bites of fruit. I could’ve eaten more.
On to the Pampering There was a Great Clips next door, so David got his curls clipped and then we went next to the hotel to get our toes done. It was heaven sitting in those massaging chairs and being pampered. I wasn’t done as quickly as David, so I encouraged him to get his nails done, too. Then he wasn’t done, so I got mine done! My nail professional was an angel, we prayed for one another and she allowed me to hug her. See? God.
We went back to the hotel and rested. David scored TWO naps! TWO!!! I couldn’t sleep, but it felt good to lay there. Then we got ready for our second meal of the day, dinner. It was beyond yummy and I ate every bit of that meal, too. They even had a local pilsner for David to enjoy, which he did x’s 2 because, well, it was 2’s day. Here are some pictures from this wonderful day.
God so has me covered. His hand has been on me every step of the way on this Mayo journey. Actually, on every step of my trek through this life. If I go back over the last few days, it is evidenced from packing through to day 1 at the Mayo.
Our day started early, and we arrived at the Mayo about 15 minutes early. Dr. Burger’s nurse took time to correct my “allergies” -sensitivities really- and get the remaining answers she needed from me. Then the doctor came in. Briefly: he noted that although it isn’t unheard of, and “is mentioned” (in the annals of some great book of diseases apparently…) it is not common for Sjogren’s to cause pulmonary hypertension. So he wasn’t quite sure why the original pulmonologist jumped right to PH as my diagnosis. I felt a small but mighty twinge of hope. Maybe it’s NOT PH, or maybe it’s just at the beginning – but if it’s not that, then what is it? I hoped and believed I’d find out through this man.
The blood pressure threshold in the heart for pulmonary hypertension is above 35. Mine is 34. They will retest with their equipment. Not that I don’t have it, my pressure is only 1 away from the diagnosis. If his tests indicate I don’t have it, he’ll move on to why I have the symptoms I do. If he confirms the diagnosis, he’ll do the heart cath. When he was finished the emotion broke me. I felt my face crumple, my head bow, and I cried. I left the doctor’s visit feeling like I was in the best hands possible, it was an unbelieveable relief to have confidence in the person I was entrusting my care, MYSELF, to.
The scheduling process for all of the tests is absolutely amazing, when you consider the thousands of people who descend upon the Mayo and her resources from out of town, every single day. It runs like a well-oiled machine, but that doesn’t guarentee you’ll get into every test during your 3-day stay. My scheduler got me into almost all of the tests today. He told me how the ECHOs are impossible to schedule, because there are so many covid patients as well as heart and lung patients, and EVERYONE is from out of town and need them immediately. After about 10 minutes of trying he said, “I can’t believe it! I got you in for an ECHO – this is unheard of, in fact, I couldn’t get the guy before you in for his!” Thank you Jesus.
The first two tests were located on different floors and in a different building. From the bloodtest (which took forever as the lab waiting room was set up like a a Disney line for check in, then you’re emptied into a gymnasium where there were hundreds of people waiting). We had to hurry to the covid test which was an 8 minute walk away. The next test (the impossible ECHO) wasn’t for an hour and a half, so we drove the 6 minutes or so back to the hotel, ate and stretched out for a few minutes.
Here is the afternoon schedule: ECHO at 12:25, walk test at 2:15, chest x-ray at 3:10, 3:45 electrocardiogram. Bear in mind, these are all on different floors, then up and down long corridors. It felt like a blur, a diagnostic marathon. But I was so happy everything was getting done in one, fell swoop. No going home, making and coordinating 6 completely different appointments, driving to each separate one, then going back to the doctor for the results. All taking weeks, or in my experience, at least a month or two, to find out what’s going on.
I’ve had an ECHO before. This was so much more thorough, plus my doc ordered a “bubble test”. Say what? That entire concept creeped me out. I was like, ” EXCUSE ME – can you please explain why injecting air bubbles into my vein won’t kill me?!?” 😬😱 Right? That’s how untraceable murders are committed, you can’t fool me. I read mysteries and watch movies, I know how it’s done!
Anyway, I was given an IV and bubbles were inserted into the line to see where they went in my heart. The IV made me smell and taste the solution, and in spite of the explanations of how “Oh we do this all the time” or “it’s not great BIG bubbles, more like disturbed saline…” I wasn’t convinced. A quick prayer was all I had time for. I mean, those murders are committed by “disturbed” humans.
The other tests were uneventful, but I was wiped out. I had 0 spoons left and just wanted to go to bed. But it was a beautiful, sunny day and I felt like we should see something of this new city. After discussing it, we decided to take a drive. David found an entry into the beach so we zipped up our jackets and went for a blustery and refreshing walk along the Atlantic coastline.
Tomorrow’s another day of testing. I have to be here at 7 to be on standby for an “exercise test”, otherwise I have to come back Feb. 10th for it. I am also going to pickup an oximeter for a sleepover sleep apnea test. We bring back the equipment the next day on our way home. Whew!
I’ve been faithful to my exercise and diet regimen, I promise. I’ve been dealing with freezing temperatures, autoimmune exhaustion, and the logistics of the Mayo trip.
I started my day with making my smoothie for breakfast and the next couple of days while out of town. I did my breathing, 20 minutes of arms/aerobics, and took a 30 minute hike through the woods and over hill and dale. Then I showered, finished up packing and off we went!
1:25 We just left to drive to the Mayo. My appointment is tomorrow. 3+ hours and a nice portion of an audiobook later later… We arrived in Jacksonville, and found the correct building at the Mayo. Now to the hotel.
David found a great alternative to fast food or high sodium restaurant fare. It’s called Kathy’s Table. They have prepared bowls of good food with lower sodium than anything else we’ve found. It wasn’t exactly delicious, but a great find for me. He is so good. More tomorrow!
Heres a recap of my missing days (for my journaling benefit: Friday, January 28 – Today was breathing, a 25 minute hike/walk, and Qigong meditation. Rooting for this gorgeous, sweet, and brilliant girl who’s always #ourqueen. Love her so much, and over the moon proud… Can’t wait to hear if she’s the next Queen of Snows!
Saturday, January 29 – This was the coldest day in 10 years, or so I read. I did arms, Bollywood for 30 minutes, my bike for over 2 miles. The rest of the day was spent with sister Kathy. I had her do some Bollywood with me, to show her what I do. While the guys went to a gun show, we finished tying off a baby blanket, made egg salad and took a nap. Later, we had to finish covering all of the tender plants and reinforce some areas with extra coverings. It’s an arm workout all on its own! David grilled some fancy pre-spiced burgers for he and Kathy, and EJ and I had plain ones.
Sunday, January 30 – I was so tired and my back hurt, so I took a day of rest although I did do meditation and breathing, and we went shopping. That always entails a lot of walking! We packed more for the trip, did laundry – and other miscellanous chores.
Exercise Journal: I have done so well, in spite of my tweaky back. Yesterday I did yoga which incorporated breathing, stretching, and therefore, flexibility. I also did arms while on my feet and moving, so I did get some aerobic activity. In addition I did 10 minutes on my new bike AND went shopping after my dentist appointment. I had a headache all night, getting up about 1 to eat a rice cake and take a Tylenol. It didn’t work.
Thank goodness Dr. Noah did 30 minutes of neck and shoulder stretches with self massage and structured breathing today, it helped. Later I warmed up on my bike for 6 minutes and hiked with David for a half hour. Whooo hooo! Here is my favorite part of the day. I fed her some clover, scritched her face, and she came in for a kiss. So adorable!
It should say, “you’re a bad back…” or, “you’re an autoimmune disease, PH, plantar fasciitis, hiatal hernia, trigeminal neuralgia…”. I’d have LOTS of answers for any of those. 😡
Here’s my attempt to consider the question instead of giving focus to my injury: Take 1 of each sock. Put some of them around and under the washer and dryer. Put others in other logical lost sock places… Save 2 for the house elf so they can be a free elf. What’s yours?
PS: So I am watching Dr. Noah’s Bootcamp, day 17b, thoughts and motivation and he’s ending with his adorable fur baby, Monkey on his lap. He says, “just know that me and Monk have your back…”. All I can think of is, “Noooooo, you don’t want my back!”. 🤣
Today is about 44, drizzling, and grey. Not very inspiring – and yet, I stuck to it, listening to Dr. Noah doing what he does, making a healthy breakfast of my extremely nutritious smoothie, and about a half of a cup of steel cut oatmeal with a few pecans and apples, some cinnamon, a drizzle of honey and a splash of almond milk. I had to split my drink up because I can’t shove that much into my belly at once… also, I had to give the last two bites of oatmeal to David. That stuff might be good for you, but it turns to eruptions of acid after eating it and later, horrible gas pains that double me over and amount to nothing. TMI? Well, I was just wondering if it affected everyone like that.
After digesting, I thought I would try venturing down the driveway hill (no mean feat, it is very steep and long), and out on to the street. I noticed that I walk much more quickly on the street. Also, my low back aches more noticeably. I found one of my favorite Florida wildflowers as I walked through the drizzle, Innocence (Houstonia procumbens) below – it has a link so you can go read more about it if you’re interested. Moving on, I came back to MaidenShade cottage and did almost a half hour of aerobic Bollywood upper body work. That’s enough for anyone!
It’s been a solid 28 since about 1 a.m. in southern Floral City, up on our woodsy sandhill. Birdbaths are frozen and it feels like Minnesota out. We covered, but that doesn’t completely protect things with these sustained freezing temperatures. We put a chick heating light under the papaya tent we made. It’s full of fruit that will probably fall… But if it survives the frosts and freezes, it will live to bear again. Our bananas have baby nanners, too. I hope they make it.
I’m in the middle of the 3rd week of my pulmonary hypertension lifestyle change. I’ve lost 4 pounds and I know my body is grateful for the healthy measures I am taking. Most of the time the pressure in my upper chest is less. Moments of anxiety and too much salt increase that sensation. I’m actively listening to my body and mindfully doing, and being.
Bootcamp has been very helpful. The team that they’ve assembled to teach the different relaxation, exercise modalities and breathing techniques makes it interesting and fun. Yesterday I did an arms up session that was challenging for me. It is hard to keep your arms up and moving for 15 minutes! I do use water bottles to increase the difficulty. Then I did 20 minutes of Bollywood dancing moves with beautiful (and nimble) Aastha Joshi. Oh joy, yet another humbling experience. 😂 You’d never know I was in a Romanian dance group! I’ve become so stiff, slow, and uncoordinated. But I wobbled and tripped, gestured and jiggled along, quite enjoying myself.
After a shower, we went shopping for a few hours. I got a few more things for our Mayo trip. Some long sleeved shirts and another pair of Sketchers relaxed fit, D’Lux Walkers. I highly recommend this style of shoe if your feet get bruised wearing normal ones. They have memory foam and are squishy enough that I am able to walk with minimal pain. Not 100% pain free, but bearable if I give it a rest for a few days in-between walks so the bruising on my heels can heal. Today I tried them out, I did a 30 minute walk up and down the woodsy hills (as well as my education, breathing and meditation). They were better than to looser model, but not as rigid as they probably should be for the kind of hiking/walking I am doing. But I do like them.
In other exercise news, I ordered a recumbent bike for us. Me to get off of my feet for aerobic exercise, David for his knees and hip and upcoming rehab from an inevitable replacement surgery. Some reasons to get one for home were that we are at minimum 30 minutes from any exercise facility. We live in Florida, it is unbearable to exercise in the summer humidity, and I am actually very good about utilizing my exercise equipment. I had a Stairmaster for years and used it. Cons were the cost and lack of space. Still, this wasn’t an easy decision for us, and not just because of the price. I am 4′ 11.75″ and David is about 6′ 1″. Getting anything from chairs and toilets to bathroom vanities, countertops, and cabinet heights to exercise equipment, to fit both of us is next to impossible. Once again it is mostly my fault. My height is the anomaly, although in this case David’s weight stretches weight limits on cheaper machines. After much research I chose this one. It has the most adjustable seat range, smallest footprint (our house is 1000 sf), and is rated as the most comfortable, smoothest, best customer service, sturdiest etc., by 80% of buyers.
That’s enough for now. It’s already after 9, and I haven’t done anything towards making my smoothie or watching my daily dose of Dr. Noah. Have a blessed day and like they say in my circles, breathe easy.
Hello again, it’s Monday 2!
After blogging, I got very, very busy. I washed and prepared a ton of veggies to make a Dr. Terry Whals recipe, Mitochondrial Miracle Soup. Her main focus is healing oneself from MS, but I used her diet to try to heal my Sjogren’s. I figured even if it didn’t heal me, it sure wouldn’t hurt! It’s a diet that basically, (and simplistically stated), has you eliminating certain things like gluten, dairy, sugar, and eating clean foods (organic and grass fed…) and about 9 cups of differently colored vegetables (I can’t ingest that much so I adapted it to fit my body) as well as taking specific supplements.
After doing all of that, I walked for the half hour. I didn’t think I’d be able to, but I did it. Then I had some of that soup with a wrap. Heads-up, okay? It is NOT delicious. It has 0 salt except what’s in the bone broth I used. To be honest, I have to just think of something else and eat it – but I am determined to help my body heal. So just like walking when it hurts, I eat and drink stuff that is less than appetizing. I hope my stupid betraying body appreciates all of this, or I am going to be pissed. Lunch done I got back up onto my aching feet and measured out 10 containers of about a cup each and froze all of that soup but enough for the coming week.
NOTES: I amended my batch as I had different ingredients. She says to use a soup pot to sauté stuff in, then to transfer it to a slow cooker – but I don’t have enough energy to wash even one more dish, so I just KISS and use a big soup pot.
Mitochondria Miracle Soup Ingredients: 3 tablespoons olive oil 3 large onions, chopped 3 large leeks, chopped 6 cloves garlic (or more!), pressed 3 large carrots, peeled and chopped 3 small stalks celery, chopped 1 medium turnip, peeled and chopped (I also put in a parsnip) 2 huge leaves chard, deribbed and chopped 4 leaves each black kale and Scotch kale, deribbed and chopped (I used about 3 cups of baby spinach) 1/4 head cabbage, chopped 1/2 teaspoon dried thyme Sea salt and freshly ground black pepper, to taste (0 salt) 2 small sweet potatoes, peeled and chopped 2 (14.5-oz.) cans diced tomatoes, un-drained (0 salt kind) 4 quarts homemade bone broth or 4 quarts low sodium chicken broth (I used 2 quarts of bone broth, added water and a bunch of raw chicken thighs to make my own broth, as I didn’t have either of her kinds. Also, I wanted meat in it.
Instructions: In a large soup pot, heat the olive oil over medium-high heat; add the onion and cook until nearly translucent. Add the garlic and sauté for a couple of minutes, but don’t let it brown!
Add remaining veggies; sauté for just a minute or 2 (you’re not cooking them, just getting the wonderful flavor this quick step will infuse in your soup). Add the thyme, salt and pepper while sautéing.
Simmer the mixture in the soup pot on the stovetop for at least 1 hour. Just before serving, gently mash some of the sweet potato chunks against the side of the slow cooker or soup pot to thicken the soup; give it a stir and serve.
Soup Variations (Don’t do this to the whole pot of soup, just the amount you pull out to fix yourself for lunch, etc.): –Tex-Mex Soup: Add some salsa for a little heat (and a dash of cayenne if you like), a little ground cumin and chopped cilantro. Top with some diced avocado and more chopped cilantro. – Tuscan Soup: Add some fresh chopped basil leaves, chopped tomato and gluten free and nitrate free sausage. – Autumn Soup: Add some diced acorn or butternut squash, a sprinkling of ground nutmeg and some chopped parsley. I also add an ample sprinkling of curry powder.
It’s one of those “you’d better listen to me when I’m talking to you!” days. My body is rebelling, so no exercise for me. I am headachey and snorty. My heels hurt and my back is threatening to lay me out flat for a week.
I worked on my anniversary post instead. Helped cover tender plants and not much else. I felt that kind of cold you can’t get warm from. I felt so icky, I took my temperature. It was 98.4, about a degree and a bit high for me. Was it from bad food? Not enough food? Did I do too much? From weaning off the estrogen? Who knows. That is all…
Today I managed 30 minutes of walking the hill, stairs, and everything in-between. I did Qigong and breathing, and listened to Dr. Noah. A milestone day – and I should be proud, but I am afraid to be. My body is telling me to stop. My heels are hurting worse each day. My back twinges are warning me it is on the verge of going out. I feel that familiar cumulative exhaustion building, the brain fog descending. Why do I always feel worse when I try to exercise??? It is so discouraging. I will talk to the Mayo doctor and see what he says, I guess.
On a happier note, today marks 27 years of marriage for us. Our successful marriage is more precious to me than anything. It is my miracle from God, and answer to decades of despair, I am blessed beyond measure and so very grateful for my husband.
We had a really nice dinner out with my sister and her husband. That might sound like no big deal to you normal human beings. But for me it’s a huge deviation from the norm. I am not only a recluse, but you never see me out at night. Maybe once ever couple of years for something like this I’ll ignore the tiredness, and rue the fatness as I struggle to find something that fits me, anything suitable for evening wear.
For one thing my feet will not cooperate with normal shoes. I need squishy soled things that allow the painful bits a total cushioning. Hard hurts so that means I have to wear my Dawgs plastic rubbery slide thingies. They are not pretty and for sure don’t go with anything dressy. For another I no longer own anything but PJs, jeans, sweats, and long sundresses. Partially because I don’t work or go to church, or keep “polite” company. But also because we live out in the boonies on our 7 acres of woods with our 5-6 cats and chickens, none of whom care how I look as long and love me just like I am (as I’m cozy to sit on and feed them). With Sjogren’s makeup is a thing of the past, my eyes can’t take it and my skin repels any form of face makeup making it look like alligator scales with those tannish hued creases of gunk. It’s so hard to fight feeling ugly, fat, and honestly, I am too weary to fully engage in conversation or with others. I am lucky if I stay up until 9. Then there’s the low sodium, no sugar, reduced gluten (etc.) diet… So my point is doing that last night was huge for me, and it was very nice in spite of myself 🤣.
I wanted to repost something I wrote in an old, old blog. It is very long, and very romantic. It’s the story of us. I tried to find all of the appropriate places to change the number of years. I may have missed a few. To read it, click “read more” (if it works).
I was going to write a post for today, January 21, 2022, and wanted to find the picture of us kissing that first night we met. I found this post (probably written after 8 or so years) and also found, well, I couldn’t say it any better. So in lieu of new – REPOSTING:
Too much salt? Use less. Ingredient you can’t have? Substitute with what you can. No need to take the joy out of snacking with ideas like these around!
Cruncy Baked Broccoli
Preheat oven to 375° • Chop a head of broccoli (do not rinse, immediately prior to preparing.) • Mince 2-3 cloves of garlic • Put broccoli, garlic, 2 tbsp. olive oil, and salt and pepper to taste in a ziploc bag. • Shake it up. • Spread out on baking sheet, place on top rack, and bake for about 30 minutes.
Broccoli will be crunchy and delicious!
Zucchini Ingredients for 4 servings • 2 zucchinis • 1 cup panko breadcrumbs (or healthier alternative) • ½ cup grated parmesan cheese • 1 tablespoon garlic powder • 1 tablespoon dried basil • 1/2 teaspoon salt (to taste) • 1 teaspoon pepper • 2 eggs
GREEK YOGURT CHIVE DIP • 1 cup plain greek yogurt • 1 tablespoon lemon juice • 2 tablespoons fresh chives • Salt to taste • ¼ teaspoon pepper
Preparation • Preheat oven to 425°F (220°C). • Cut zucchini into fries and set aside. • In a large bowl combine panko, parmesan, garlic powder, basil, salt, and pepper. • Whisk eggs in a shallow bowl or dish. • Dip zucchini in eggs, coating evenly, and then toss in bread crumb mixture. • Place on a baking sheet lined with parchment paper. Bake for 15-20 minutes, flipping halfway. • Prepare dip while fries are baking. Combine all dip ingredients in a small bowl and set aside in the refrigerator until ready to use.
Preparation • Preheat oven to 425°F (220°C). • Cut sweet potato into fries and combine in a large bowl with olive oil, rosemary, salt, and pepper. • Place in a single layer on a baking sheet lined in parchment paper. Bake for 20 to 25 minutes, flipping halfway through. • Prepare dip while fries are baking. Combine all dip ingredients in a small bowl and set aside in the refrigerator until ready to use.
Preparation • Preheat oven to 425°F (220°C). • Cut off about 1-2 inches of asparagus ends. Set aside. • In a large bowl combine crushed almonds, parmesan, garlic powder, oregano, salt, and pepper. • Whisk eggs in a shallow bowl or dish. • Dip asparagus in eggs, coating evenly, and then toss with the crushed almond mixture. • Place on a baking sheet lined with parchment paper in a single layer. Bake for 15-20 minutes, flipping halfway. • Prepare dip while fries are baking. Combine all dip ingredients in a small bowl and set aside in the refrigerator until ready to use.
Tips • Make sure bread crumbs (I used croutons) are fully crushed • I didn’t have enough almonds so substituted with panko bread crumbs. • I also made sriracha mayo. • Add red pepper flakes for a kick.
Preparation Preheat oven to 425°F (220°C). • Cut carrots into fries and combine in a large bowl with olive oil, parsley, paprika, salt, and pepper. • Place on baking sheet lined with parchment paper in a single layer. Bake for 20-25 minutes, flipping halfway. • Prepare dip while fries are baking. Combine all dip ingredients in a small bowl and set aside in the refrigerator until ready to use.
Garlic Parmesan Potato Wedges Ingredients for 2 servings • 3 potatoes • 3 eggs • 1 cup grated parmesan cheese • ¼ cup fresh parsley, chopped • 1 tablespoon dried oregano • 1 teaspoon paprika • 1 teaspoon garlic powder • 1/2 teaspoon salt (to taste) • 1 teaspoon pepper • ½ teaspoon red pepper flakes
Preparation • Preheat oven to 375ºF (190ºC). • Slice potato in half then take the half and quarter it. • Whisk 3 eggs in a small bowl. • Combine remaining ingredients in a medium bowl. • Coat each wedge in egg wash, then coat in dry mix, until entirely covered. • Place on a greased baking sheet and bake for 30 minutes. • Allow to cool for 5 minutes.
OMG – I completely forgot about this! Let me preface by stating that I am not on any drugs whatsoever. All though I am a Christian, I didn’t consider myself one of those fanatical standing on the corner preaching doom, types. This was like a vision that tore me out of a sound sleep, I was then compelled to write it down. Please excuse the ginormous run on sentences. It was the middle of the night and the words seemed to write themselves. Phrases just tumbled out, begging the question, “Who am I channeling?”
The pledge of the 13, is a Christian song stating, “if I can be believed when the unbelievable still hold sway, so shall I stand”.
Meaning if a faithful person can get through, be heard, understood; in spite of the prevailing perversions, upside-down thinking, moral-less lies of today’s popular culture – then I, too will pledge, thereby adding my faith and voice to the others, forming a barrier of belief against the enemy – a spiritual hedge of protection around the world, reaching out into God’s universe. The verse changed slightly 13 times to lay down the “spell”, to cover all ground or circumstance, to cut off all avenues and loopholes of the deceiver and its followers.
In my dream/vision it was my recently deceased brother, Jimmy, who opened the door to outside, which let Sassy our cat out, who I went after, and that’s where I heard the song he was singing, the forcefully powerful words he was speaking into the dark.
There was one phrase building upon the next like an immensely powerful secretly timed pledge of allegiance to uphold righteousness. As it was recited it brought or released light, and began turning the tide back to sanity, to God. It was visceral as it continued all around me, as if sung by heavenly hosts (or some kind of universal surround sound), even though Jim stopped singing and turned toward me and said, oh, it’s you.
I could feel the thundering enormity of it, sense the repercussions as each syllable, each repetition strengthened the border between good and evil. I could feel its unique vibration in every atom. It was apocalyptic and biblical, but entirely modern and current. I began singing as if the words were inside of me, like I knew them personally, intimately, as if I was reciting an old standard like the Our Father. But it was a statement, not a supplication. It came from the place of ultimate power, it originated from our Source.
What could it mean? Is some modern day revival imminent, issued forth via a Christian rap song? It was presented like a viral TicTok challenge, getting the furthest reach imaginable through social media, video, and song. I knew it spanned the globe.
This was “Ding dong the witch is dead”, and the Who’s holding hands singing praises after Christmas has been stolen, or, “Look, up in the sky!” as a superhero swoops in to save the day… It was portentous and hopeful, a relief. Good does prevail, it is written.
I got up to 34 degrees that quickly rose to 63, sunny, and gorgeous. When it got warm enough, which came after listening to Dr. Noah and doing some basic yoga stretches with breathing, I went out to take off sheets and boxes, to release all tender and captured plants to the soft day.
Yesterday was a good day. Sticking to my newly amended diet, but allowing enough of things like salt (lower sodium choices, tiny amounts or no added salt) and sweet (in dates and fruits) has become less burdensome. It helps so much that David is in on the fun, and as always, he helps with most of the preparation and cooking, too. Speaking of diets, why is it that although I am the one on one, and I am the one exercising, walking, meditating, etc., my husband is the one losing weight??? It just isn’t right. A woman diets and her husband loses weight. It sounds like an old Yiddish saying or something. Oy.
My breathing has been feeling that restricted way, even though my blood is fully oxygenated. It started last evening after a 15-minute hot tub and subsequent warm shower. But I was so cold and I ached, I regret nothing.
Anyway, I had been about to go into my studio to write, but it was too brilliant and amazing outside. I set my alarm for 25 minutes and started to walk. Bootcamp is supposed to take 6 weeks to reach 30 minutes of walking, but I am blessed enough to be able to take that portion of the program more quickly. The woods called to me, and they didn’t disappoint.
As I walked I appreciated the soft carpet of pine needles and earth under my feet. I tend to look down, as the ground is fraught with giant pinecones and trippy-uppy branches – it is an actively living entity, and it is messy. I do NOT need a broken hip to add to my list of fun. There, shining in a patch of sunlight was a white feather. “That is portentous, if I remember right”, I said to myself, intending to look it up when I got back. I picked it up and felt its softness. Then I stuck it behind my ear as I moved on through the woods, up the big hill.
Also because I look down as I walk, my deaf ears are tilted just right to hear my next encountered miracle. Even though it’s been freezing, which puts into hibernation or kills many insects, I could hear buzzing. LOUD buzzing, like thousands buzzing. Bees of course. I looked up into the tree I was passing, and they were everywhere, happily drinking nectar or gathering pollen. It was like finding a burning bush.
Bees! bees! come to the trees Where the Lime has hung her treasures; Come, come, hover and hum; Come and enjoy your pleasures! The feast is ready, the guests are bidden; Under the petals the honey is hidden; Like pearls shine the drops of sweetness there, And the scent of the Lime-flowers fills the air. But soon these blossoms pretty and pale Will all be gone; and the leaf-like sail Will bear the little round fruits away; So bees! bees! come while you may! – Cicely Mary Barker
I followed a deer trail down into the lower meadow and checked on the ancient, gnarled plum trees to see if there were any buds. Not yet. There were little terrestrial orchids, standing like sweet, tiny soldiers. On the way back up the hill (I went the way I came), I found an amazing old piece of a tree. It was white and twisted, and had just the right angle to put into a garden where I’ll plant something in its crook. I rescued it from its nest of tangled grasses and carried it part way back up the hill, until my heaving chest felt like it would explode. I put it by until next time when I’ll carry it a bit further.
At the hill’s crest, in the little meadowby some downed trees, there were treasures of small red pavers, and big old concrete-step pavers we can use on our hill. There were also some strange Lincoln log type of concrete building blocks that previous owners of this property had left for me to find. One day I’ll have someone gather them all up and put them together.
So you see? It was a wonderful walk and I couldn’t wait to tell you.
Angels have white feathers, and thus finding one is a message of peace, love, protection and light. A white feather is a powerful message and blessing from God, and is a sign that all will be right for you soon. It tells you God has sent his angels to be around you. White feathers symbolize hope. They speak as a beautiful reminder to ‘fear not, because your heavenly father has given his angels charge over you’.
Thu 3/31/2011 6:24 PM Dear J, I shared your writing with my sister. She said “I’m speechless” too … And she loved it.
Sent from my iPad
On Mar 31, 2011, at 12:52 PM, Two Hopkins wrote:
I’ve been thinking and thinking about you, Mary – I wrote more too, just had to. xJ
Dear Mary, It is time my dear. Time for us to pull up our stakes and become the pioneers trekking through what we fear within ourselves. Tough, hard-working women of this desolate, but lovely prairie of life we inhabit, create. Plodding stalwartly through circumstances we choose, but seem somehow destined for and are therefore made to wander. Yes, we are explorers, journeyers – who learn to use every available item wisely, lest we suffer the consequences of want later.
Did I say wisely? I think I did, silly me; wise then, except for our hearts. Those we use up again and again as though they have no bottom, nor limit, certainly no expiration date. Plodding on, throwing out our hard-earned caring to strangers, scavengers and scoundrels like so many pearls before those swine they taught us about in parables and clichés.
But like Grinches, by now they are 4 times, 5 times, 10 times too small, our poor shrunken hearts. Still, remember every time before, when our sentimentalities filled those depleted cups up for us yet again, didn’t we gulp them down like passengers on the desert caravan? So dry, we get so very, very dry. No wonder we luxuriate while we can, there in the possibility of true love.
But enough of that, it is late and we have to set out for a new destination. Let’s call this one a “holiday”, a term borrowed from those foreigners across the puddle. Like traveling to the wilds of Africa, China, Spain or Mount Ararat it will be exotic and wonderful, I promise.
We will stare the inscrutable Sphinx in his hollow, ruined eyes and not turn away, not even when he breathes out his decrepit, ancient dust at us! And this joy of becoming will not run out, it will be self-fulfilling like a prophecy we breathe into life. It will begin with our belly-lurching excitement at our brilliance and audacity, and continue through that exhilarating satisfaction of being on that new road we travel.
We will believe in mercy this time, and forgive ourselves for endangering dwindling resources. Reckless now for ourselves, of ourselves – getting back fully what we give. Accepting responsibility and the ease of putting one foot in front of the other, moving away, on, and beyond.
This morning I watched a couple of very … different… breathing techniques on the YouTube Bootcamp channel (day 8, C I think). There was humming, PUHing, pointing, coughing, and more. All of the different exercises were done with an open mouthed, pursed lips breathing. Having Sjogren’s and being extremely dry, it didn’t work so well for me. I think it’s aimed at people whose lungs produce lots of phlegm. 🤮
We worked for an hour or so covering tender plants as it is supposed to be freezing tonight, and then went to the grocery store. I counted that as enough for me. I need a day of rest from walking.
For the first time in ages/years, I made my morning smoothie. I drank this religiously for about 6 years before I somehow wandered away from it. Here’s the recipe:
MY SMOOTHIE For my 72 oz. Blender:
INGREDIENTS: ½ Cup Plain Low Fat Greek Yogurt 2 Servings of Bluebonnet Whey Protein Isolate, Natural Flavor (has NO sweeteners) 1-2 Ripe Bananas (to taste/sugar desires) 2 Carrots, chunked (washed, not peeled) 2 Celery Stalks, chunked 3” Cube Of Fresh Ginger (peeled) or to your taste (I forego this as it hurts my belly) ¾ Cup Frozen Blueberries ½-1 Cup Pom Brand Pomegranate Juice 4 Cups Organic Girl brand Baby Kale (I don’t measure, I shove in as much as will fit) Water to thin it out
NOTES: I try to buy all organic fresh veggies and fruits, if at all possible. Sometimes it isn’t. I wash and scrub all the veggies well. I generally put things in the order above as I have learned that kale is very “poofy”, and if you try to put stuff on top of it – you’ll end up with a big mess. At the very least put in the yogurt and protein powder first. I hold onto my carrots and celery one at a time over the blender jar, and slice the chunks down into it. I break my bananas in ½ and place them into empty areas. I use the highest setting and let this grind/blend for about 2-3 minutes. The result is a very pulpy, chewy drink that has tons of antioxidant benefits, fiber, and of course vitamins. This will feed me for 2 days, it seems like a lot, but it’s mostly air. I drink my fill day one, and put my leftovers into an airtight container for the next day.
You can experiment and use different fruits depending on your body’s needs. This combination was based on my research for my Sjogren’s, RA, fibromyalgia, and chronic fatigue symptoms. I am incorporating the best raw “super” foods for me.
I cannot tolerate any artificial or “new” sugar substitutes, like stevia, guava, and so on, which means no flavored protein powder for me (most times I don't even use it). If it has flavor, it has sweeteners. I have to make sure my protein powder has nothing like that in it. I find I don’t need or miss added sweetness, in fact after putting honey in there once, it was cloying. I’ve tried adding beets (if you try this, use only a tiny amount, blech), tomato (horrid), and other greens (bitter, unhappy tastes).
Brrrrr. The temperature is dropping, and by tomorrow it’s going to get even colder. Tomorrow night and the next, it’s getting down to freezing. Next week off and on, too. I don’t do well with cold.
This morning I decided not to use my Evamist. I feel okay so far. I did my meditation and breathing, ate a healthy veggie-filled breakfast, and then went on a 20 minute walk through the woods with David and my handy walking stick. I had him snap a couple of pictures, here’s one.
This afternoon (well, it’s already 2:35…) I intend to rest and do my exercises later. I’m kind of sore from yesterday’s marathon! I hope to take a brief (safe) hot tub, I know it’s forbidden, but dang I ache. This is one of those tough ones for me. Hot water has saved me so many times with my owies, we spend a lot on a therapeutic spa for me. I can’t just quit using it, can I??? I promise I won’t stay in long… Not being under a doctor’s care yet, I feel like “it” hasn’t really started yet. Funny how the mind works, eh?
GENERAL DAY I woke with the realization I had slept all night. This is a once or twice a year occurrence, a gift! Before I knew it, I had done all of my morning chores, had coffee, and caught up on my Bootcamp work (more on Bootcamp later). The Bootcamp catch up took over an hour – I was amazed at my stamina.
We got dressed and went to do some running around. I had to return things from my Wednesday shopping, and got some more clothes for the Mayo trip, too. I also got some Sketchers Super Walkers for my exercise and walking. I hope they work to save my feet from the crippling plantar fasciitis and Achilles tendonitis. My feet were killing me by the time we got home. Up they went and ice-ice, baby! We stopped at a favorite fish place for lunch, and for the first time I ate “healthy”, as much as possible at this restaurant. Grilled grouper, collard greens, a quarter of baked potato, and water. Aside from the excessive salt on the fish and in the greens, it was a good lunch. I’m not going to lie though, there is nothing like fried grouper. ‘sob.
While out I called my snowbird-sister, Kathy, to see if she and EJ wanted to come for dinner. We both had stuff for each other, and things to show one another. I iced my feet and we chatted while the guys went down the hill to shoot their guns at our range.
David made a pork roast with carrots and onions, gravy, mashed potatoes, sweet potatoes, and green beans for dinner. He also made some Texas toast as an extra treat for he and EJ. OMGosh it was so full of comfort and deliciousness! He is a very good cook, he does laundry, and more! I am eternally grateful God blessed me with him as a husband. Anyway, a couple of glasses of wine-over-ice-with-water and a full belly later, I said my goodnights, thank-yous, and went to bed.
BOOTCAMP So this Bootcamp I am engaged in is a very good way to take action (facilitated by Dr. Noah Greenspan and the Pulmonary Wellness Foundation). It doesn’t matter at which level you are currently operating physically. It has valuable information, even if you think you know it all… Ask me how I know 🤣. Dr. Noah encourages you to follow your body’s voice. Feel like a stretch just there? Do that. Catch up later with him. Can’t do 4 minutes? Do 2 now, 2 later. Anything is better than nothing, and sometimes that’s as good as you can do. It’s okay.
Because I was working on my Weebly blog site, I missed a couple days of education and exercises. I did walk those days though. This morning I did all of my catching up resulting in over an hour of breathing exercises, upper body and leg work, and learning about Qigong. After following along with Brian Trzasko, Qigong is my new favorite practice. It resonates with me on all levels – I can’t do yoga, but God willing, I believe I’ll be able to do this. David even participated!
In Bootcamp Day 5C, Brian taught that this is a mind/body practice. It has 4 mindful “baskets” of practice. Movement, meditation, breathing and self-massage. What I really like is the gentleness, and forgiving nature of the practice. You are only encouraged to do what your body tells you to do, no more. No pushing the limits, going beyond the pain, or any of the techniques I am used to get myself to the next level when working out. Maybe one arm can go higher, the other isn’t able to – you simple do what you are able. Can’t stand? Sit. It’s that gentle, loving, accepting nature that is essential for someone who has breathing difficulties, autoimmune exhaustion, and injuries (spinal and feet in my case). “Our bodies are always moving toward a state of healing…” With this practice I hope to eliminate those unhelpful elements (like inflammation), and allow my body to regenerate, and heal.
This week of healthy eating has been interesting. I’ve completely dropped all sweets. I mean like desserts. I have to work my way up to salad dressings, condiments, and fruits. I’m only human! I’ve substituted dates once when I had a craving. I also haven’t had any chips in between meals. You may think that’s no biggie, but for me, it is. I love potato chips. Love.
To you WordPress fans, I’ve been switching my blog over to Weebly because I hate this cumbersome format. Now I have followers, soooo, I’m going to do both. LOL@jenniferswanhopkins!!! Anyway, doing that has absorbed every ounce of energy and all of my time for days now. I haven’t been faithful to my exercise and education. I’ve vowed today is my make-up day. But now it’s after 1, and I have lunch, resting… well, I’ll have to do it later. 😁 The blog has made me re-engage with doing, learning, and thinking. So it’s a good thing. Actually I feel better for all of the steps I’m taking, I can tell a difference especially in my anxiety level.
Here’s a recipe I’ve made it before and loved. We serve it with veggies of choice and Quinoa and Wild Rice by Seeds of Change. Yum. Bear in mind, I alter recipes to fit my dietary restrictions. You can too!
Chicken With Creamy Curry Sauce Ingredients:
4 to 6 boneless chicken breast halves, without skin (or the equivalent of thighs)
Salt and pepper
1/4 cup flour
2 tablespoons olive oil
1 tablespoon butter
1 cup chicken broth
1/2 cup dry white wine
1/4 cup chopped fresh parsley, or about 1 tablespoon dried
4 green onions, thinly sliced
4 cloves garlic, finely minced
1 1/2 teaspoons curry powder, or to taste
3/4 cup heavy cream
Salt, to taste
Preparation: Lightly sprinkle chicken all over with salt and pepper. Dredge in flour to coat both sides. Heat oil and butter in a large skillet over medium heat. Add chicken breasts and cook for about 4 to 5 minutes on each side, until lightly browned. Add the chicken broth, wine, parsley, green onions, garlic, and curry powder. Bring to a boil; reduce heat to medium-low and simmer, uncovered, for 5 minutes. Cover and simmer for 5 to 10 minutes longer. Stir in cream and add salt, to taste. Heat through. Serve chicken breasts with a little of the sauce. Serves 4 to 6.
Making a Broad-spectrum Antimicrobial Tincture with Bidens Bidens should be tinctured using fresh leaves. The whole plant is active so you can use the seeds, leaves, stem, and roots if you like. It’s still early in the season and I am hoping to get another harvest of leaves before Fall, so I only took the leaves, flowers, and immature seeds in my harvest today.
Ingredients: • 4 cups of freshly picked bidens leaves, compressed • 6 tbsp. of pepper, freshly ground (omit if the person has diarrhea) Note that dried herbs and spices lose their effectiveness over time, so if your pepper is old, buy fresh whole pepper berries for this recipe. See caution below. • 1-inch piece of fresh ginger, peeled and coarsely grated • 100 proof Vodka to fill a quart jar
Directions: • Place fresh Bidens leaves, pepper, and ginger in a wide mouth quart jar. • Fill with vodka or whiskey with the highest alcohol content you can find. In BC we are limited to 40% alcohol and this is sufficient. But if you can buy vodka or whiskey with a higher alcohol content you can use that. • Macerate for 6 to 8 weeks, shaking the jar as often as you think of it. Strain. • Bottle in colored glass bottles and cap tightly. Store in a cool dry place. The tincture should last several years. • Dose: 45 to 90 drops in water up to 4 x daily.
Bidens, a common weed of pastures and vacant lots, has antiviral and antibacterial superpowers. Get to know it better. You never know when you might need to call on it as your herbal ally.
Invasive plants are God’s way of making sure we notice his medicines.
Bidens, an overlooked weed that will help you in the fight against MRSA infections If you spend any time walking through pastures or vacant lots in July and August, you may have met Bidens. And if you haven’t met it, your dog probably has. Bidens sticks like a needle into your clothing. If your dog walks through a patch of Bidens, you’ll be picking the needle-like seeds out of his coat for hours. Also called, “beggarticks”, “Spanish needles,” “demon spike grass,” and “needle grass,” 1000 Biden seeds weigh less than a gram. If you walk through a patch of Bidens in the fall, and you’ll probably have 1000 seeds in your socks. Hint, wear jeans not your yoga pants when you go looking for it.
Most people hate getting tangled in Bidens, but when I tell how amazing it is, you’ll be tending your patch with love – and harvesting it before it sets seed. And that’s a win-win! In fact, this weed could save your life.
Bidens is prolific and one of the first plants to colonize disturbed ground. It is originally from South America and was spread by the Spanish during colonization. It is now widespread all over the world, growing at every elevation, and in most eco-ranges on the planet. Bidens will even grow in the desert. You probably have some growing near you, but if you don’t, you soon will.
The plant actively colonizes disturbed land. Like alfalfa, it gives off a toxin that inhibits the growth of competing plants, and therefore reduces domestic crop yields. But it is not toxic to grazing animals.
The Best Kept Secret In 1929, Alexander Fleming discovered Penicillin. It began to be readily available with WWII. At that time new antibiotics were being discovered daily. However, Dr. Fleming noted as early as 1929 that numerous bacteria were already resistant to Penicillin. At that time 14 percent of staph bacteria were resistant to penicillin. By 1995, with decades of widespread use of antibiotics, 95% of staph were resistant to penicillin. In 1960, when resistant staph had become the most common hospital-acquired infection, physicians started using methicillin to combat resistant strains. In just a year, MRSA (methicillin-resistant staph) emerged. 70 years from the introduction to antibiotics, some staph bacteria have become resistant to all known pharmaceutical antibiotics. Bacteria seem to be winning the “war on disease.”
Herbs are different than pharmaceuticals. Bacteria can develop immunity to pharmaceuticals because they represent only one, or a few, compounds. Natural herbs, on the other hand, are made up of hundreds of complex compounds that bacteria can’t develop immunity to. Bidens is a natural antibiotic that will successfully treat antibiotic-resistant bacteria. It outperforms penicillin, tetracycline, methicillin, and other antibiotics for both gram-positive and gram-negative bacteria.
How to Grow Bidens Bidens is an annual. It grows easily from seed. If you do decide to plant it, be sure that it isn’t considered noxious in your area, first. Plant the seed 4 cm deep in moist soil in early spring. You can broadcast it or sow it in rows. Keep the soil moist until it emerges. Bidens lacy leaves are attractive and it is used as a potherb in much of the world. If you are using it for food, harvest the leaves when they are young, and use it as a spring tonic food. The plant gets more astringent as it ages, but don’t make it a major part of your diet. The high silica content can lead to problems.
If you are growing it medicinally, remove the flowers as they appear to extend the harvest window, retard seed maturation, and encourage leaf production. You will be able to get several harvests of leaves before Fall, depending on your climate. Older leaves are more astringent and drying than young leaves. In my tincture, I used a combination of both older and young leaves.
Bidens pilosa, also called Bidens leucantha, is the main species used for medicinal studies, but there are a number of other varieties in the Bidens genus that historical use and early studies suggest can also be used. The entire plant is medicinally active, including the roots. A lot of scientific studies have been done on the constituents of Bidens pilosa, identifying around 100 different plant chemicals so far. The most promising are the flavonoids, and the poly-acetylene compounds, having the broadest anti-microbial activity.
Herbalist Michael Moore was the first modern herbalist to recommend Bidens as a mucus membrane tonic. It not only removes the pain but also heals the tissue.
“Bidens may be our best herb for benign prostrate hypertrophy, usually decreasing the membrane irritability both in the urinary tract and the rectum, and often, over a few weeks of use, noticeably shrinking the prostate and giving its connective tissue better tone.” (Michael Moore, Medicinal Plants of the Pacific West, p.71.)
Bidens increases the efficiency of the kidneys to excrete uric acid from the blood, decreasing the likelihood of a gout attack. It also acts as a tonic and preventive in gastritis and ulcers, diarrhea and ulcerative colitis.
“Because it is a mucus membrane tonic and is astringent, powerfully anti-inflammatory, and strongly antibacterial, it is specific for a number of diseases caused by resistant pathogens: UTIs, chronic diarrhea and dysentery, gastritis and ulcers (anywhere in the GI tract, from mouth to anus), inflamed mucous membranes in colds and flu and respiratory infections of any sort, sore throats from coughs or infection or even overuse of the throat, and vaginal infections.” (Stephen Harrod Buhner, Herbal Antibiotics, Natural Alternatives for treating drug-resistant bacteria, p.137)
Bidens is active against: • Bacillus cereus • Bacillus subtilis • Candida albicans • Human cytomegalovirus • Entamoeba histolytica • Enterococcus faecalis (Streptococcus faecalis) • Escherichia coli • Herpes simplex 1 and 2 • Kiebsiella pneumonia • Leishmania amazonensis • Mycobacterium tuberculosis • Neisseria gonorhoeae • Plasmodium spp. • Pseudomonas aeruginosa • Salmonella spp. • Serratia marcescens • Shigella Flexneri • Staphylococcus aureus • Staphylococcus epidermidis • Bidens is not very active against Aspergillus, a fungus that affects people with a weakened immune system.
When to Harvest Bidens: While Michael Moore suggests harvesting the leaves during the growing season and drying the plant for tea, the antimicrobial actions of the plant are strongest when the fresh leaves are juiced or the fresh leaves are macerated in alcohol to make a tincture. Many of the active ingredients in the plant are soluble in alcohol but not in water.
For use as an antimicrobial, harvest the leaves fresh and make a tincture. Black pepper is synergistic and enhances the actions of Bidens. Use 5% freshly ground black pepper in your tincture for maximum synergy. However, black pepper should not be used if the tincture will be used in the treatment of severe GI illness. See the caution below.
Cautions: Bidens possesses anti-diabetic properties. It lowers glucose levels, increases insulin sensitivity, and stimulates the release of insulin from the pancreas. It should be used with caution in people with insulin-dependent diabetes. Definitely speak to your doctor before using Bidens for its glucose-lowering properties if you are on insulin.
If you are using this tincture for severe intestinal infections such as E. coli or cholera, omit the pepper in the tincture. The pepper can increase intestinal permeability, which can allow the resistant organism access to your organs in greater numbers, making you much sicker.
Bidens in the treatment of Malaria Alcohol tinctures of the fresh plant showed a 90% inhibition of the malarial parasite in vivo, while the dried plant tinctures showed a 65% inhibition rate and the water extracts only a 38% inhibition rate. This was the same whether resistant or non-resistant strains were used. In comparison, chloroquine-susceptible strains, when treated with chloroquine, will show a 99% inhibition. So Bidens is almost as effective as the drug on chloroquine-susceptible stains, but not quite.
On the other hand, when the parasite becomes resistant, Bidens continues to work. So when using Bidens for malaria, larger doses need to be taken for longer periods and only use the fresh leaf tincture.
Bidens effect on blood pressure and heart rate Bidens has a relaxing effect on the vascular tissue, is a vasodilator, and relaxes the heart. It reduces the aorta resting tone and inhibits the KCL and CaCl2 induced contractions by 95%. The effects are long-lasting. It lowers blood pressure.
Pepper is synergistic to the actions of Bidens. Ginger is also a catalyst to the actions of Bidens, increasing circulation and moving the plant compounds throughout the body. The following tincture recipe contains both to help increase the effectiveness of Bidens in treating antibiotic-resistant disease.
Bidens, an overlooked weed that will help you in the fight against MRSA infections
Making a Broad-spectrum Antimicrobial Tincture with Bidens Bidens should be tinctured using fresh leaves. The whole plant is active so you can use the seeds, leaves, stem, and roots if you like. It’s still early in the season and I am hoping to get another harvest of leaves before Fall, so I only took the leaves, flowers, and immature seeds in my harvest today.
Ingredients: 4 cups of freshly picked bidens leaves, compressed 6 tbsp. of pepper, freshly ground (omit if the person has diarrhea) Note that dried herbs and spices lose their effectiveness over time, so if your pepper is old, buy fresh whole pepper berries for this recipe. 1-inch piece of fresh ginger, peeled and coarsely grated 100 proof Vodka to fill a quart jar Directions: Place fresh Bidens leaves, pepper, and ginger in a wide mouth quart jar. Fill with vodka or whiskey with the highest alcohol content you can find. In BC we are limited to 40% alcohol and this is sufficient. But if you can buy vodka or whiskey with a higher alcohol content you can use that. Macerate for 6 to 8 weeks, shaking the jar as often as you think of it. Strain. Bottle in colored glass bottles and cap tightly. Store in a cool dry place. The tincture should last several years. Dose: 45 to 90 drops in water up to 4 x daily.
Notes: Bidens is used to remediate toxic waste dumps and will absorb cadmium and arsenic. Don’t harvest leaves where they may have been exposed to toxic waste.
My appointment is February 1st and I have to be there at 7:00 a.m. They tell you to plan on staying 2-3 business days in a hotel in case they are able to schedule tests and procedures. I am on a cancellation list, too. I’d prefer to get in sooner with the DoctorI have chosen. I could have gotten in sooner with this Doc, but my gut said to go with the other one. I don’t know why… The Mayo in Jacksonville is 3 hours away. I wonder how many times we’ll have to make that trip? I wish we had a camper to save on hotel bills (and so I could bring a kitty)!
Last night’s dinner with Kathy and EJ was delicious, so good I ate it for breakfast. I don’t think it would matter what kind of fish you put on there, just so it is firm enough to hold together. We had salmon or grouper to choose from. The salsa is what makes it. I’m telling you that stuff is good enough to eat with a spoon. I’ve made a believer out of another “fish tacos? YUCK” person. (No, not EJ. He brought a sandwich to eat.)
Today I did my education, breathing and exercises in the Pulmonary Wellness bootcamp. It had the addition of upper body work in concert with the correct breathing techniques. I did a walk-about outside for 8 or so minutes, too. It was very crisp, even going up and down the hill. I chose to go inside the yard vs going on the road. We are so blessed to have such a beautiful yard! Only those who know how flat most of Florida is would appreciate the uniqueness of this property with our little house perched into the hill.
I always swore, “YUCK! I will NEVER eat fish tacos, that sound so disgusting…”
011022 Grilled Fish Tacos with Vera Cruz Salsa
Ingredients: 1 1/2 pound piece halibut or any firm fish that will hold up to grilling 2 tablespoons ancho chile powder Black pepper to taste (salt optional) 2 to 3 tablespoons olive oil White cabbage, shredded for topping 8 to 12 white or yellow corn tortillas, warmed on the grill
Directions: Heat a charcoal or gas grill to high for direct grilling. Sprinkle the halibut with the ancho powder, salt and pepper. Grill until golden brown and charred on both sides, and just cooked through, about 5 minutes per side. Remove to a cutting board and let rest 5 minutes.
Vera Cruz Salsa Oil, for grilling 3 large plum tomatoes 2 jalapenos or 1 big pablano, stems removed 1/2 cup chopped fresh cilantro Black pepper to taste (salt optional) 1 small red (any) onion, finely diced 1/2 cup manzanilla olives, quartered (reduced from 1 cup due to salt) 1/4 cup extra-virgin olive oil 3 tablespoons red wine vinegar 1 teaspoon dried oregano Juice of 1/2 lime
Directions: Toss the tomatoes and jalapenos with a few tablespoons of (canola) oil and season with salt and pepper. Grill both until charred on all sides and just soft. Remove from the grill and let cool slightly. Halve the tomatoes, remove the seeds if you want, and cut into a small dice. Dice the jalapenos, including the skin and seeds. Put the tomatoes and jalapenos in a medium bowl. Add the onions, olives, olive oil, vinegar, cilantro, oregano, and lime juice and seasonings. Let sit at room temperature for 30 minutes before serving.
Take a warm tortilla and put some fish, top with salsa and cabbage. OMG, so good (just ask Kathy)!
“I’m so tired, my mind is on the blink…”
It’s a Sjogren’s Kind of tired
Today was a “Sjogren’s” tired. That comes after I try to do anything besides the bare minimum, meaning, “how dare you think you can get away with exercising for several days in a row!” It’s the chronic fatigue kind of exhaustion that makes you stop, drop, and don’t move. I kept at things though.
I did my dishwasher emptying and other morning chores. I worked on this blog (so frustrating on a phone). I even went out and did a bit of gardening as my physical activity portion. Then it was lunch time and I prepared it all for us, while David worked outside. I laid down a while (stopped breathing and woke myself up gasping), and created a loose meal plan out of healthy recipes I had gone through earlier. Then I created a shopping list for David. Thank GOD for him. Now I’m at the 5:00 hour, showered and wrapping up my day. I wish I could just go to bed now. Relating my day is all I have left in me though.
Yesterday I officially started my PH homework. I am proceeding without any clinical supervision, because I am mentally incapable of doing nothing until “they” decide to grace me with an appointment. I don’t know who I’m madder at, the unprofessional actions and attitude of the pulmonologist who delivered the diagnosis and cut me loose without so much as a referral, or the system that is completely unconcerned with the time sensitive disease I have. Between the two factors, this has been an anxiety-ridden nightmare.
Begun an exercise program using the suggestions from the above.
Cut down from 2 cups of coffee, to 1.
From 2 sprays of estrogen to 1.
Turned off the humidifiers.
Taken cooler showers.
Turned down the heat.
Cut down alcohol, salt, and processed foods with the goal of eliminating what I am able without failing because of over-stringent rules.
Today I did my morning chores like feeding the cats, emptying the dishwasher and filling and putting out the feeders. David and I went for a nice 20 minute walk, it is gorgeous here in central Florida. We are going to visit my sister after our lunch and nap. I got so much done today – Bravo, me!
010722 Today I have decided that it is better to die with hope in my life, than fear. That means I read that some people can live 10 years after being diagnosed with Pulmonary Hypertension, David said 20. I’m believing for a high-quality, well-managed 15… I know the art of compromise. 😁 They want to make me crawl through the hoops at a snail’s pace when the clock is steadily ticking? Fine. I’ll start working toward healing myself, myself.
I’ll take action, and I know actively doing something, taking charge of my life and being in control, will ease the anxiety. The actions are the usual ones involving diet and exercise as well as education and looking for support. Back on our modified Wahl’s. Less salt. Wean off the estrogen. Simple exercise. Meditation. Lower humidity and temperature. Limit caffeine and alcohol. Turn to God, build up my faith, trust in and believe his words.
010622 Okay, if this is such a rare disease and fast killer, why is getting in to see a specialist so hard? I haven’t even made progress securing an appointment anywhere yet! I’ve sent my info to 2 different clinics that specialize in this disease, one is in Orlando the other is in Jacksonville. My case has to go through clinical review and be approved before I even get to set up an appointment… I feel like I have filled out applications to get into a college and I’m waiting for acceptance or denial letters. WTF?
I’m assuming I’ve had all of the standard initial tests that showed I have it. I won’t know anything more until I get the right heart catheterization and any further tests to tell me why I have it, or, God willing, IF I have it. — The prayers are working!!! 😃 I had tried the Mayo in Jacksonville and was told to call back in a few months to try to set something up. So in addition to calling the Mayo in Minnesota (where I was told they don’t take my insurance so go pound sand), I also asked for an appointment in Jacksonville using the online form but instead of Pulmonary, I tried for an internist. Well, I got a call!!! I actually said, “Praise You Jesus!” instead of “thank you” to her 🤣.
I have had my records faxed to them for review and determination. Now I pray I am accepted to be able to request an appointment.
Please don’t tell someone who has received a fatal diagnosis “it could be worse”
100522 How do I feel? Reactive as though I should do something. Reflective and evaluating. Relieved to have a diagnosis, and like my sudden cleaning out and stuff-purge had an intuitive purpose driving it. I am also validated because, unlike with Sjogren’s, I can prove I haven’t been putting on, faking, lazy. I have scientific proof!
Suddenly my perspective has been altered. Nothing matters, so why do I fret about definitives?
But after walking around in my beautiful yard, feeling God’s grace, the warm sun, seeing the golden green lushness of the trees and brilliance of the azaleas in bloom, looking at our home and things, I had these almost peaceful revelations. So, I am trying on these thoughts on by verbalizing them. I say things out loud to see if they fit, resonate, fill the black hole or remove a question. I say them to David, Kathy, Adrienne, everyone and anyone.
I say, “I am happy. My life is so good, I feel extremely blessed. I don’t feel the panic or regret of not having traveled enough or not having done something” or I say, “I don’t feel the desperation of my age in relation to an earlier death.” (Don’t get me wrong, I don’t want to die soon, and it sucks to feel it hanging over me, but it is new yet and I am still processing. What I don’t want to face is the worsening, the struggle up until death. Also there are places like up in the hills and forests of mid-California where I would have liked to live and experience again. I always wanted to write there, I felt such an affinity to that area, it felt like a magical realm. Too, the UK would have been nice to explore. But I have been so diminished physically, I didn’t seriously consider striving for a trip.)
I know that we put our resources, creative energy and vision into our homes; planning, designing, instructing, directing, (bossing…) and sculpting the properties. My love and affection has gone into our family and our kitties. It has been enough. My life has been filled with gratifying, exciting, hard work. I have found what I most enjoy doing and have been able to pursue it. I have known giving and receiving love. I have made grievous mistakes, felt convicted, been forgiven (or not) and grown. I can trace my upward mental, emotional and spiritual growth – I don’t think everyone can say that. So, no regrets, is what I am thinking. I am happy with my life, up to now, and grateful for all of my blessings, especially the one where through God’s grace I am saved. I’ve known and felt Jesus since I was a child. #1: I thank GOD I have him to give this burden to, lean on, yell at, get comfort from and go to when I die.
But what I hear in return to my statements tells me more about those I say them to, than me. I don’t know exactly how I feel – but they seem know how they feel. They speak it to me like it’s fact, in “that settles it” tones of voice. It’s just opinion, though. They cannot know how it feels or what my truth is, they aren’t facing a slow death by asphyxiation.
In my verbal testing, I’ve discovered I am intolerant of platitudes I get back to my testing statements of “maybe this is how I feel”. Please don’t tell someone who has received a fatal diagnosis “it could be worse”, or “at least you’re not (fill in the blank) alone, a baby, 5, 20, living in a 3rd world country…”. No to “you’ve got to go sometime”, or when I say I’ve received my death sentence, please don’t blithely say “well I could get hit by a bus tomorrow, no one really knows”…
Way to completely invalidate, discount and minimize what I am going through. This isn’t about your maybe’s, it’s about my reality. I’ll take your mourning, sorrow, fear, trepidation, questions, prayer, even conjecture. Those are what I am experiencing, you can emotionally be with me, share in them and understand how it feels. But I am not able to identify with that other and don’t want you to try to humiliate me into gratitude that it’s not some other horrific scenario I’ve gotten as my death surprise. I want your terror for me, damn it – this is fucking scary!
010422 It’s the first thing I think about when I wake up. It’s the first thing I feel. I can’t breathe, there’s a pressure in my upper chest. Is it the disease, or anxiety? I wish I had a Xanax to answer that question.
What does this diagnosis mean??? Do I get the hearing aids, build the addition, do the remodel? Should I liquidate everything David doesn’t want of mine (while I am able) so he doesn’t have to? For sure update my legal documents. Other than that, I am frozen and don’t know how to proceed.
After spending hours upon hours trying to find a doctor, we hugged. “Maybe this is just some horrible mistake.” I said, and we both let ourselves be buoyed by that possibility. But even if it isn’t this, it is something.
I’ve told everyone I want to know for now. I appreciate the “I am so sorry’s, I love you’s”. I don’t know if I should rally against the will of God, which I have to assume this is. I guess it doesn’t hurt to ask…
“For sure it’s cancer because I smoked” was my first thought.
“I feel like my life force is dwindling”
Look how I was grinning in this picture. Back then I didn’t know what I know now. Here’s what’s going on.
I feel like I am declining and have been telling my husband David for a good year that I’ve felt like I am slowly dying. Or as someone so eloquently described, ‘like my life force is dwindling’. We’ve been eating like crap, and we know better. The last 4 months I have told him it is making me feel sicker, I need healthy food. Suddenly I could sense the salt in foods and was repelled by it. I didn’t want the processed, easy food – but didn’t have the energy to buy, prepare, and cook good meals. Believe me, when you are dependant on the work of others, you don’t want to ask them to do more. I tried for buy in – but David works, does other house stuff, and has enough to do. He didn’t feel like doing it either. So I kept eating garbage.
My complaint is shortness of breath, increased heart palpitations, a hacking, choking cough at night, occasional dizziness and nausea. There have been occasions when I couldn’t even talk when walking a short distance, had to bend over, sit down, and recover before I could go on. Because of this, I made this appointment a good 6 months ago, but it took 3 months to get in, then the testing took time and I was just diagnosed with pulmonary hypertension Monday. All my symptoms are so close to my autoimmune disease (weakness, exhaustion, being out of shape from sitting), I just thought it was progressing, or I was in a flair. Except the shortness of breath. I thought I had something related to my esophagus narrowing, reflux, COPD, or lung cancer. “For sure it’s cancer because I smoked” was my first thought. Nope. At least there are treatments for that, there is remission, even a cure. I don’t even have COPD and only minimal scarring on my lungs from who knows what. Probably because I worked in an autobody shop and was around asbestos, fiberglass, construction stuff like sawdust, sanding mudding compound, sheetrock dust, gardening dust and so on.
I have to find a doctor who can do a right heart catheterization for a more precise diagnosis and treat it. Unfortunately, I live in the middle of nowhere so there isn’t anyone close. I have been trying for hours a day to get an appointment in Tampa, Ocala, Jacksonville, and Orlando, but no luck so far.
How’d I get it? I also have Sjogren’s Syndrome with its complications, and other autoimmune diseases like arthritis, any of which could be causing it. It can be because of undiagnosed kidney disease (which I know I don’t have because I just went to my urologist in October), blood clots in the lungs, and it can also be hereditary.
Because I am not that old, I was simply told by the diagnosing pulmonologist to follow up immediately with a clinic that could perform the right heart catheterization to discover the source of the pulmonary hypertension. She gave no definition of what I had, no explanation of what to expect, no “do you know what this is or what the implications are?”, “do you understand?”, or, “do you have any questions?” Not even a referral. Just a general appointment phone number to Tampa General where, after 2 days of trying, I was told, “we don’t do that, this is the wrong number…”. And no, they didn’t have a number or suggestion of who I should be calling. What kind of doctor does this, treats someone that way?
If you’re having shortness of breath in the Brooksville Florida area, I can tell you which pulmonologist NOT to see…