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quarantinewithbean · 4 years

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Dirty vs. Clean

I think these terms are constantly consuming our minds at this point. At least, they are mine! I have always been a clean person, but this pandemic has brought my thoughts of contamination to a new level. When I get home from work, I take my shoes off outside of our house in our garage. I then walk into our entryway and set my bags on the ground, set my phone and keys on a table, take my coat off and hang up. I walk to the kitchen and get some disinfectant wipes and wipe down my phone, keys, bags, hang the bags, and wipe where everything was sitting. Wipe the door handles and light switches and anything else I may have touched. Then I throw the wipe away and wash my hands. Then I change my clothes. I also wipe down all hard surfaces, cupboard handles, railings, etc. in our house on a regular basis.

Any packages or mail are left out for a day to try and kill “dirty” virus germs that may be on them. And if we handle mail or a package, we are sure to wash our hands (for at least 20 seconds) when we are done.

Going to get groceries does not happen in person anymore as we get all groceries delivered. We put our order in ahead of time as we know it will take a few days, then we disinfect everything in our order and let it dry on the counter. Then we put it away, disinfect the counters, and wash our hands. God bless the Instacart delivery people who are in charge of shopping and bringing our groceries to us...we are sure to tip them well each time.

At work, I take even more steps to disinfect things. It’s almost distracting. Even though I am the only one who uses my office, I still wipe down my workstation with sanitizing wipes when i get in. Before eating lunch or snacks I wash my hands. I open any doors/microwave/fridge using a paper towel. As I think I’ve shared before, my office is in a small little building not attached to the main hospital and I typically only see 2-3 people when I go in, and all of whom are at least 6 feet away from me if I see them at all. I wash my hands just about every hour (as that is how often I’m having to pee now in my almost 7th month of pregnancy) and my hands are looking dry, cracked, and chapped. But at least they’re clean.

I feel like this invisible enemy is making me paranoid and I’m sure I’m not the only one! Even though I know it is the safest thing to do, I feel GUILTY assuming that any other person has the virus. It feels so abnormal. Every person I see I automatically think “Are they infected? Could they give this to myself and my baby?” It makes me feel judgy and I hate that feeling and pride myself on being the opposite! We aren’t even letting our family members come over to our house unless they have been completely isolating for at least 2 weeks, “just in case” they have been exposed to the virus. My dad has been building a crib for Bean and has been purposefully isolating himself from all other people so that he can drive it out to us safely and without exposing us - even putting off a carpentry job just so he can avoid being around others. Partway through his first attempt at isolation, he had to go into the clinic to have a procedure done, and started his isolation over. So he’s coming a week later. Because as we all know, if you are around one other person, you are essentially exposing yourself to the germs of EVERYONE they have been around, and we know people can shed/spread the virus before they are symptomatic, etc. etc. etc.

All of this is so much and so unpleasant to think about! I know it is necessary, but it is hard. It’s hard not to be social, not to give hugs, not to sit close to others, not to let friends and family touch my ever-growing bump. But I know it is for the best and won’t be forever.

I am VERY grateful that Aaron works from home and we don’t have to deal with him being exposed to anyone at an office. I’m also glad that we enjoy spending time with each other (still, somehow! lol). If you have someone to share this time in isolation with, consider yourself very lucky! It is so much harder for those who have no one else at home. Be sure you call and check on your loved ones who are all by themselves. I promise you they will be happy for the contact. Aaron and I have been doing some new fun things to beat the quarantine blues, including me teaching him how to play Mancala (my favorite childhood game), and watching a family of jackrabbits play in the field that is across the backyard from our house. They are ENORMOUS!! I knew that they were a mascot around here but was not aware of just how big they are in real life! We at first thought it was just a mom and dad and baby and named them Jack, Jill, and JoJo. Now we see that there are actually 3 little ones, so we have 2 more to name :) It is super fun to watch them tear across the field running after each other. I just cannot get over how big they are! We thought they were dogs or baby deer at first and then realized, nope...they are MegaBunnies. Aaron brought his rifle up so we could get a good look through his scope when we watch them. I also just ordered some binoculars online so we can have a better way of viewing them instead of having to hold up that rifle :)

I had my prayers answered this week when my supervisors and senior leadership approved my work from home request! I honestly never thought it would happen as they have not allowed hardly anyone to do so, but they made an exception for me because of my pregnancy AND because I already see the majority of my caseload using video/telehealth. I will still need to be in my office on Tuesdays and Wednesdays, but am not expected to go over to the hospital for in-person visits anymore and can just hide out in my safe little office sanctuary and see patients from my computer. This will drastically reduce the number of people I see on a daily basis as well as the number of potential exposures for Bean and I. We set up an area in the spare bedroom downstairs that is a perfect, private, quiet space for my workday. I even have a cute little coworker/sidekick that keeps me company when I’m not in session (see pic at the end of this post).

I can’t believe I will be getting into my 7th month of pregnancy this weekend! Things that are getting harder for me are: putting on socks/shoes, wearing pants, shaving my legs, dealing with heartburn, getting in a comfortable position to sleep in (and sleeping in general, which is weird as I’ve never had that issue before!), sitting up from laying down, and dealing with having to go to pee about every 5 minutes. Also, not sure if other people who have gone through pregnancy have had this, but it feels like I have to pee mainly when I stand up and not when I sit down. So I stand up, run to the bathroom, sit, and then feel like I don’t have to go anymore. LOL! Like, JUST KIDDING! I know that my doc says that is normal due to the pressure that baby is putting on my bladder and gravity but, man, it’s annoying.

I have my next checkup on Monday and will be going solo as the hospital I go to is now requiring patients to come alone unless under the age of 18 to stop potential COVID spread. Aaron has been with me at nearly every appointment so this will be a change. For my 32 week ultrasound I will Facetime him in so he can see Bean - and we always get printouts of babe from those appointments, too. I only have 2 in-person appointments left, one on Monday and then my 32 week, and all other appointments will be via telehealth. Thankfully we are not in an area of the country where they have outlawed spouses from accompanying mothers during birth - both hospitals here have vowed not to do so at any point in the future, either. It is just crazy to me that some places have done that!! I can’t imagine having to go through labor without my husband there. Although things have definitely looked differently for me during this pregnancy than I ever thought they would, I am just focusing on the fact that as long as myself, family (including Bean), and loved ones make it through this pandemic OK, I will be very very happy.

I hope you are all staying happy and healthy!

xoxo - Miranda

My cute little coworker. Don’t mind the floors, we have to redo them...

Taking a 6+ foot social distance walk with my mom, complete with masks.

There’s me wearing my mask and shield that I needed to wear in the hospital before they allowed me to work from home. I wanted a pic to show Bean someday the crazy time that preceded his/her birth!

The crib my dad has made for Bean!!

Aaron watching the MegaBunnies using his scope :)

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phawareglobal · 5 years

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Lorraine Bourne - phaware® interview 269

Pulmonary hypertension patient Lorraine Bourne on the frustration in getting a proper PH diagnosis and the importance of connecting with other patients who share her rare disease.

I'm Lorraine Bourne and I'm a pulmonary hypertension patient.

I would say the first time I heard the words pulmonary hypertension, and in my case, pulmonary arterial hypertension, because that's what I have, I was feeling like I was going to pass out every time I exercised. It had been going on for about two years. I went to three different doctors. I talked to my heart doctor first and he ran a few tests. He said, "Oh you're perfectly fine. Just keep doing what you're doing." That was the first year. Then I went to my annual checkup and I had all my three doctors lined up within three weeks of each other.

I went to my general practitioner and she says, "Oh that's a heart problem. So talk to your heart doctor." I said, "I already did but I'll talk to him again." I talked to him again and he says, "We're not running anymore tests. You're just the same. We'll just keep on doing what you're doing and don't worry about it." I thought, either there's something really funny in my head and it's all in my head, or there's something going on.

I'd been seeing my pulmonologist for probably five or six years with sleep apnea, but he had never seen my tests, he had never seen anything. He didn't know what was going on in that respect. When it came to my heart problem I told him what was happening. He said, "I know exactly what's happening to you. I am positive you have pulmonary hypertension. You need to have a right heart catheterization. If you want to go ahead with it we'll do it. Great." I said, "Do it." Because I had fatigue, I felt like I was going to pass out all the time anytime I exercised. So we went ahead and did it.

When we got through he said, "You have pulmonary arterial hypertension." I said, "what's that?" Then he started explaining to me the condition and what it was about. But at that point in time I didn't know anybody. I hadn't heard of anybody who'd had it. It was after my second right heart catheterization and my oxygen had dipped down to 86, so I was on oxygen. I had just gotten out of the hospital. My husband was over in Japan or Korea or somewhere like that and I said, "I don't care. I'm going to this pulmonary hypertension conference because I have to know people. I have to know who they are. I have to know that I have. I need to understand what I have.”

So just within a few days of getting out of the hospital I hopped on the plane and the last conference was the first place I ever met people that were just like me. I had rented a scooter because I knew that I wouldn't make it through without a scooter, and the minute I drove through the halls and saw the first person with a scooter, we both just reached up and high fived. It was just like, “yes, there's someone like me!” It was just so fulfilling to know that I wasn't alone anymore. You feel like, “am I really thinking this up or is it really something real that I'm having inside myself?”

I helped take care of my mother for ten years and I'm pretty positive she has exactly what I had. I helped take care of my grandmother. I'm pretty positive she had what I had. So it's like, you're saying in your mind, "I know this is real because I've seen it." And yet the doctors are telling you, "Well, you're okay, just keeping doing what you're doing." Especially your heart doctor. When your heart doctor tells you that, it's like, "Well, do I really know what I'm dealing with or am I just thinking that I'm going through those things." So it's really frustrating and it's really discouraging, and you wonder if you're going to be all right.

There's been a lot of changes in my life over the last three years. I've been diagnosed for three years. I would say I've learned a lot more about my condition. Learning to ignore the crazy things out there, like you're going to die tomorrow, or within two years. You hear some of those things sometimes when you're first told that. I've actually learned that I'm going to live and I can move forward. I've learned that there's so many technologies. Just in the three years that I've been diagnosed, so many more medications have come out. Like combination medications that more and more people are using.

There's so much more to life and there's so much more to live for. There was a time when I got really depressed and felt like I am going to die. I learned to get over that hump and say, "Okay, I can't do everything that I used to be able to do, but there is so much that I can still do, that I love to do. So focus on the things I love doing and forget the rest."

The other thing that I've done is I've been involved with a support group. We started it up about 24 months ago. I was one of the original members, and I kept telling my doctor, "I want to be part of this, I want to be part of this," because I feel like support is so essential, so, so, essential. I remember how I felt when I first felt I was alone and didn't know what I had. If people start to understand what they have, then they have more hope and they can go forward.

Awareness is really important, because you have to be your own advocate. There are too few doctors who know or understand what we're dealing with and going through, and if I am not aware, I cannot be my advocate. But it's also important to be aware to let other people know around you what's happening with you, because when they're aware then they start understanding what you're dealing with. Awareness is essential no matter what.

Early diagnosis, as well. There's so many things that are important with awareness within myself, within people I help. The whole community. The more people that know, and the more people that are aware, the better off we are because the better we will be treated and the more potential we have of being taken care of properly. I'm Lorraine Bourne and I'm aware that I'm rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me

Listen and View more on the official phaware™ podcast site

#pulmonary hypertension #phaware #rare disease #lung disease #clinical trials #podcast #PH #asthma

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theliterateape · 5 years

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Long Train Running: A Chicago Marathon Story | Chapter 2 — The Cost of This

By David Himmel

It’s just past dawn on a Saturday morning but it is still dark. The sun hasn’t shined for days. It hides behind clouds of ash and poison. We’ve been attacked. It was likely Iran. But it could have been North Korea. Even Mexico and Canada are suspects. We’re not sure. Telecommunication is dead. The satellites still orbit but the processors on the ground do not compute. America is no longer an empire or world power, but a writhing pest struggling to stay alive under a cold, deadly mass of putrid toxins. All our centuries of technology building means nothing. We have been reduced to relying on our most basic human survival skills. This is a struggle for even Bear Grylls.

Bomb shelters, makeshift bunkers mean certain death. To survive, we must keep moving. Word of clean air has spread like gossip. It’s always just over that ridge or two clicks beyond that hill. And so we run. Speed, strength, and endurance are our only hope for survival. This is our marathon.

We’ve trained for this. We’ll be fine. But the gear we’ve come to rely on has either been destroyed or rendered useless. Without our Garmin watches set to intervals we cannot determine our best pace. We can listen to our bodies but our bodies have been wrong before. You recall when our bodies told us we could handle another shot of Jägermeister when we really could not. Our Garmin watches, the running and training apps on our smartphones never let us down. And so we’re not running smart because essentially, we’re running blind.

Our Saucony Vigor Jacket, which protected our skin from rain and wind so well was lost in the initial attack. So, too, were our Salomon S/LAB XT-6 LT ADV running shoes. And our Nike Running Dri-FIT shirts and shorts. We have no Gatorade chews or gels. If seeing our spouses and children being burned alive in a slow instant didn’t leave us feeling overwhelming despair, running without all of our high-tech, expensive gear has. Yes, we’ve stretched. We think we know our cadence. But without the gear, we might as well have died the moment the warhead struck.

✶

How in the world did anyone run a marathon, or be a runner in any fashion without all this stuff? GPS watches and running/training apps didn’t exist twenty years ago. How far more difficult it must have been for those poor, primitive beasts. A cotton T-shirt? Don’t be a fool. Cotton absorbs your sweat and hold sit there and can limit your movement and weigh you down and oh God! I have a Timex Ironman watch. Though presented as a watch ideal for training for an Ironman, it is incapable of timing out intervals. Two weeks in to the Bank of America Chicago Marathon training and I see how detrimental that is.

There’s no question that running tech improves the running experience. It certainly makes tracking your training easier. But is it worth it? That depends on how you value money. And how much you have.

I’ve seen the haves and the have nots. Those with the gear and those with cotton T-shirts or watches that don’t do intervals. And I’ve been the guy who, when running with the team, watches and listens for the pace leader to announce an interval break. And then I don’t feel like a chump for not having a more high-tech watch. If my training regimen calls for me to run intervals on my solo runs, I may just have to adjust the training that day. And the coach says that’s allowed, so it won’t break me.

What will break me is the cost of running. If I let it.

I’ve been training for the Chicago Marathon for, officially, a week-and-a-half. I’ve already spent close to $400. And none of it was on a watch or hydration systems or new shoes, or chews or gels (but I did pocket a nice grip of free samples the other day — thanks, Gatorade!). But I’m sure those purchases are imminent. I’ve got that Saucony Vigor jacket in my cart right now, waiting for me to click buy. Do I need it? Probably not but will it make the chillier and wetter runs more comfortable and allow me to warm up sooner and remain comfortable on those longer runs? Probably. And hey, it’s on sale! Just $99.99! That includes FREE SHIPPING! Oh, and look! There’s an additional coupon!

And as you pass, those dying at the roadside use their last breath to call out to you, “Way to go, runner! Keep it up!”

Time will tell if I ever spring for a watch upgrade. I don’t need to blow four hundred bucks on one. I’m sure I can find one being resold by a marathon retiree or a half-marathon dropout or as part of an estate sale from someone who died after completing a marathon — or died because they were wearing the wrong shoe for their gait. The risks are real, yo.

I don’t want to fall victim to the marketing. Not yet, anyway. It’s still early. I want to train a bit more and figure out what I actually need. Maybe I do need more Dri-FIT running shirts and shorts. If not to improve my running experience then to improve the foul stench emanating from the reheated old sweat held in the fibers. Because even Dri-FIT holds enough moisture to stink eventually. Options are good when you can’t do laundry every day.

But the most expensive part of this training so far has been, and likely will be, the physical therapy I’m receiving for my weak parts that caused so much pain last week. I need to be strong. I need to be flexible. And in the two sessions I’ve had, along with the homework stretches and strength-building exercises assigned to me as homework, coupled with the cross-training routine and the easing-back-into-it running I’ve done, I’m feeling remarkably better. So I’ll shell out the $150/visit from the zipper pocket of my new Nike Running Dri-FIT shorts to pay for a little one-on-one professional assistance to get me where I need to be so I’m well enough to take the helm and man my own engine.

Why out of pocket? Because my Blue Cross Blue Shield plan is shit. Thanks to the Great American Health Insurance Scam that is the crux of our healthcare system, I’m unable to secure a plan that covers much more than emergency room visits, surgeries and annual checkups. Athletico called me to tell me my plan wouldn’t cover treatment. I didn’t get the message. So when I walked in for my appointment yesterday morning, they looked at me like I was crazy.

“Did you get a call from us?”

“Probably.”

“Your plan doesn’t—”

“Oh, I know. I’d be surprised if it did. It’s okay. Whatever it costs.”

They must not get that response often. It seemed to blow their minds.

Why such a crap plan? Because I work for myself and I can’t afford to shell out much more than close to half a grand a month in principal payments. But this gripe is not mine alone and is part of a much larger, far more dyer conversation. I digress…

But I also move forward. Stronger, faster, better. Poorer.

✶

Along the roadside are fellow humans bent over in pain from side cramps and charley horses and shin splints and torn hip flexors. It’s a gruesome scene. They stew in their own sweat without a breath of wind to be found. You want to stop and help them. Let them know that it’s okay to run in cotton. It’s okay to not monitor their pace-per-mile exactly. You want to stop but you can’t. To avoid your own cramps and injuries, you’ve got to keep moving. Never slow the momentum, never stop the inertia.

The hellish cloud is overhead. But you believe that you can almost see the clear skies and that clean air and a second wind just up ahead. You don’t know how far you’ve run. You only know that that you can keep going because it doesn’t hurt that bad.

And as you pass, those dying at the roadside use their last breath to call out to you, “Way to go, runner! Keep it up!”

Catch up and keep the pace! Previous Long Train Running chapters

Chapter 1 — Ready, Set, Ouch

If you’d like to help Gilda’s Club Chicago, an organization the provides free cancer support to anyone impacted by cancer, please make a donation to my Team Gilda running page. I appreciate your help. More importantly, so do the thousands of Gilda’s Club members who would be lost without it.

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