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 my Dawgs plastic rubbery slide thingies. They are not pretty. 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 🤣. 27 Years and Counting 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".
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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, out I went 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. 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. 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 meadow by 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. 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. 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 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. I tried to find my picture of it, but alas it has disappeared so I had to find a royalty free image. Here's the recipe: MY SMOOTHIE For my 72 oz. Blender: INGREDIENTS:
NOTES:
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 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. Curved Tree 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? 1/15/22
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. It was an amazing, productive day. 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. Switching over to the Weebly format 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. To fill in some content, here's a recipe. I've made it before and loved it. We serve it with veggies of choice and Quinoa and Wild Rice by Seeds of Change. Yum: Chicken With Creamy Curry Sauce
Ingredients:
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. Bidens Alba grows like a weed (🤣) here in Florida. It is a wonderful pollinator attractor and the birds love its seeds. I always reserve areas for this wonder daisy-like native in our yards. Read an entire article on this amazing plant by clicking "read more" below. RECIPE: Making a Broad-spectrum Antimicrobial Tincture with Bidens Alba 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. Click below to see the entire article including uses, cautions, and more. Today I went to get my medical records from Advanced Imaging and the pulmonologist to bring to the Mayo. It took forever!😬 But that’s okay, I met Kathy and we went shopping. Me for some new PJs and a couple of new tops for my Mayo visit, and Kathy got a cute shirt and an over the door mirror. Then we had lunch. It was a long day, and now I have a headache, but it was worth it. We had a nice time together. David rubbed my shoulders with some Sageworks magnesium cream, and that really worked to cure my headache. I swear by this stuff, I use it for neuralgic pain, Achilles tendonitis and plantar fasciitis, everything that hurts. I'll include a link in Resources for their company, too. No, I am not paid to advertise this product, I just use it! I've purchased it for myself, my mom, David's folks - and given some to people to try. I got an appointment at the Mayo! 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 Doctor I 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 sounds so disgusting…” 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)! 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. I have 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.
Here’s what I’ve done starting yesterday:
…or, don’t get mad, get busy 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. 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. That’s enough for the morning’s reflection. 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. WTH? 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. — Later that day — 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. ...But I Can't Wake Up
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 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 dependent 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… |
Author's NoteThis is my personal journal as I navigate life. What I say is from my perspective, it is my truth. I realize the implications of this kind of honesty, it is risky. Welcome
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