#“tests came back negative” is the most frustrating thing to hear at the doctors office

[pitiless-achilles-wept]

Always Waiting: The Cost of Never Being Done

Hi all,

I kept waiting for a time when I felt like I had time and energy to write and...surprise! It turns out that's not just around the corner when you have a chronic illness and are still working full time (not to mention trying to keep up a social life and maintain all your relationships). But I figure some information is better than none at all, so I'll get through what I can. 

You all remember (I think) that I went to Dana-Farber after my December CT scans showed significant growth of my primary tumor despite the metastatic sites holding steady. I came out of that meeting with two recommendations for clinical trials. One--my top pick--was being run out of Massachusetts General Hospital and Dana-Farber and involved an antibody-drug conjugate (IMMU-132) that has been shown to be super effective for triple-negative breast cancer but which got held up at the FDA approval stage. Doctors are pretty frustrated that the approval is still pending and that the only way to use it is on a trial, but there's hope that it might get approved in the next 6-9 months. The other is being run out of UPenn by the same doctor whose study I was on before and who I really like. It looks at the effect of chemo + an immunological agent vs. just chemo.

There were several reasons to prefer the MGH study (even though it would have necessitated traveling to Boston during the coldest months of the year), among them that I wouldn't have to endure chemotherapy as part of the trial. And it looked for a while as though I was going to be able to join it. It wasn't actively enrolling but there was a spot. I waited, in the days right before Christmas, to hear. And my doctors all worked hard, calling the PI and discussing the option of enrollment at either location. But it didn't work out. Another patient made exactly the same call I would have made--and I cannot fault them for that--and I am several places down on the waiting list. Spots open up when people leave the study, so presumably when their disease worsens or a better treatment option opens up. It only happens every couple of months. Doing the math, it seemed more likely that the drug would get approved by the FDA than that I would get to enroll.

I was pretty angry. And it was hard because there was no single person to be angry at. Not at my doctors, all of whom knew my preference, did all they could, and gave sincere apologies when it didn't work out. And not at the other patient who took the chance that I so hoped I'd be given. If anything, I was angry at the FDA for not approving the drug faster, or at whoever was funding the study for not allowing there to be more than 68 patients on it at any given time. The fact that groundbreaking, life-saving medical research is also a business constantly makes me angry. Sometimes it works in my favor (IMMU-132 will likely get fast-tracked on its second go through the FDA because someone will make money) and sometimes it doesn't (why fund more spots than you need on a clinical trial just because people want to be in it?).

So then there was more waiting. So much of having Stage 4 cancer is a waiting game. Waiting for promising new research directions. Waiting for that research to get funded. Waiting for those studies to enroll and complete. Waiting for FDA approval. Waiting for insurance approval. And, the biggest one by far, waiting to see if it works.

I was home for the holidays, not meant to see an oncologist until mid-January. A third option was proposed, which was staying on the study I had been doing with the PARP inhibitors but first doing a short course of radiation on the breast tumor. When I got home at New Year's I booked in to a radiology consultation, even though I felt a suspicion that it wasn't the best option. (Several oncologists told me that if the PARP inhibitors had stopped working on the initial tumor it was only a matter of time--and likely not much of it--before they stopped working on the metastatic sites too.) After spending nearly an hour with yet another very helpful doctor who had studied the whole history of my case (and a little bit of my research, once I told him what to Google) I saw that I was right. A tumor this size, he said, would only benefit from a pretty lengthy radiation course and we only had a grace period of 2 weeks for me to get back on the PARP study. He reminded me that it would be an option later and wishes me luck.

I'd like to pause here to do something I haven't done before and ask you all a favor. I understand exactly why this happens but please, to help me out, don't ask anymore about why I am not (yet) having surgery or radiation on the tumor. Yes, the primary tumor is the biggest and nastiest and pains me every day. You can be sure I'm also asking that question of my doctors, not only when there's a treatment change but when I tell them that it's hurting me. I know that it seems simplest to just cut it out (even if this means altering my body in a way that I am not eager to do) or try to shrink it. And I know that's why people ask. All the time. ALL the time. Unfortunately, it leaves me feeling defensive--do they not know that I have thought of this option every single day as I carry around the painful, swollen weight of a 6cm tumor?--and like I have to justify my decision. I imagine one or both those things will happen immediately. I have many (medical) reasons for not doing them yet. When I decide to do them, you will know and I will tell you more about why. But it would make me feel a lot better if I knew people weren't going to keep asking. Thank you.

Ok, back to what happened one I decided that radiation was out. Essentially, last week I officially consented to the study that's at Penn and that involves chemo. My first session will be on January 30th. I'll be going every 3 weeks. The agent I'm receiving is one of the oldest (carboplatin) and will be given in a higher dosage than when I went every week. This means it's likely to make me sicker. (The doctors did say that I'd feel worst on days 2-5 and better as the cycle wore on.) No one told me that people tolerate this one especially well and, having been so relatively lucky with side effects before, my worst-case-scenario brain assumes my luck will now be bad and that I will really struggle, lose all my hair, not be able to work, etc. Unhelpfully, although they can speak in averages, no one can predict how anyone will react to chemo. So just...wait. As usual.

To join the study, of course, there are a great many hoops all of which involve trips to Philly. I had a biopsy yesterday (Wednesday) and am spending tomorrow (Friday) getting CT and bone scans. There was an ongoing fight with my insurance company today when I got a phone call first thing in the morning telling me that they had canceled tomorrow's CTs because I didn't have authorization. Without authorization, no CT. Without a CT, no joining the study. Without joining the study, no starting chemo on time (lots of rearranging of my work and ride/support schedule). Lucky for me, my doctor's office was the one to do the calling and arguing. But it's frankly absurd to deny authorization for a CT scan to a documented Stage 4 cancer patient. I cannot even imagine what further information they would need for that one. And if I hadn't been joining a trial there would have been no rush and, likely, I would have been the one calling. The amount of admin involved in being chronically ill is frankly staggering. The end result, luckily, is that I am going in tomorrow.

And that's why I must get to bed. I know I make it sound like swinging by the hospital for a biopsy is no big deal - it's an outpatient procedure with only local anesthetic! I ate Shake Shack afterwards and went to work today! But, in fact, it's stressful to the body as well as the spirit to be on an operating table, numbed up with local anesthetic, and pierced in the lymph node or breast by an ultrasound-guided needle ten times (because you are doing so many studies and they all need research samples). The scans tomorrow will be easier - all I have to do is not eat beforehand, drink barium, lie in an x-ray contraption while having contrast dye injected through the port that's plumbed into my artery...then take a break before being injected with a radioactive tracer that will infuse my bones for a couple hours until I lie perfectly still and have them imaged. Easy, right?

I like to say that this stuff is no big deal--that it's just a lot of waiting in different places. And that's true, to an extent. The CTs don't hurt and they aren't physically demanding (although I'm not great at drinking that much barium milkshake that fast). The bone scan is kind of cool and I plan to wear my "Biohazard" t-shirt. But my normalization of the massive apparatus surrounding being ill and my incorporation of it into my everyday life does, I think, minimize the physical as well as emotional toll I pay each time I have a test or treatment. Not only are those reminders of the insidious disease that has taken so much of my life from my control--I'm not even thinking about that consciously most of the time--it's just all so relentless. There's always another call to make, appointment to keep, symptom to track, bill to pay, person to text or call. I am never, ever done.

On that last item, I do often feel burdened with guilt. I want support, but don't feel that I can always pay it back in the form of updates or thanks to those who so generously give it. But I do hope you all know that I'm here, appreciating each and every piece of it that I get. Social media may not be great for some things but it is wonderful for the small kindnesses that can buoy me up on a tougher day. This has been one, so I'm off to bed. But I send you gratitude and love.

Bex

#health update #clinical trials #my life as a cancer patient #mbc #stage 4 #chronic illness #bex writes

[chusset]

Leon’s Plight (Or, “Klaus and ELoise’s House Is Fucking Exhausting”)

I literally couldn’t come up with a decent title so here’s this. Part 2 baby and I’m reaching for 3 because I’m loving this plot of Leon realizing that batshit crazy Jo is the most normal part of his life. @carolionel

--------------------------

Leon thought he could have a pretty decent time staying with Klaus and Eloise for a while. They insisted that the guest room was his as long as he needed it, and that they didn't want any sort of payment, though Leon intended to figure out some way to do that without them knowing. But by day three of being apart from Jo, he didn't know how well he could handle 'a while'.

For one thing, the guest room was directly beneath the master bedroom. The first night staying over, Leon was reminded of being in 2-Fort and frequently being disturbed at night by Klaus's sneezing. Leon gripped at his hair in frustration after the third time of waking up. "Jesus Christ, how did I never smother him with a pillow?” he asked himself aloud, wondering how Eloise wasn’t an exhausted, cranky mess every day.

The next night, he moved to the couch in the basement, which was done up nicely as a den. Leon insisted to Klaus and Eloise that he just wasn't terribly comfortable in the guest room, so he wouldn't offend Klaus with the real reasons (He didn't care too much if he did offend, but he had seen Eloise go absolutely apeshit over someone hurting Klaus's feelings, and he wasn't interested in his name being added to the list of those who had suffered at her hand). Unfortunately, the basement was directly beneath Klaus's office, which was apparently one of their favorite love-making spots. After hearing Eloise's desperate gasps of her husband's name each time the pictures on the walls shook, Leon couldn't help but feel like he didn't know these two quite as well as he thought he did. He hadn't expected this out of Eloise and Klaus. Eloise, so prim and proper and soft, and Klaus, so nervous and self-conscious. Of course, they were adults we were sexually attracted to one another, and sex was a basic human urge. Maybe he always pictures them in a meek missionary position with the lights off. God, why was he imagining them in any position?

He did miss sex, though. He missed holding Jolene afterward even more. 

Another thing was that Klaus and Eloise's home was a bit more open than Leon was used to. He nearly had a heart attack when he went into the kitchen early the next morning to find Spencer comfortably having a bowl of cereal at the breakfast bar.

"Hey! 'Sup, Sasquatch?" the ex-Scout asked casually around a spoonful of Fruit Loops.

"You--! Mein Gott! What the hell are you doing here!?"

"Having breakfast. B forgot to get milk again."

"Again? How often does this happen?"

"Meh....once, twice a week?" Spencer shrugged before swallowing quickly and grinning when Eloise came into the kitchen with baby Leon on her hip. "Hey, little Rozzy!" 

Little Leon, who had previously been sleepily resting against Eloise's shoulder, immediately brightened and grinned at Spencer. "Ayyyy!" he cooed in the closest thing to 'hi' that he could manage. 

"Oh, good morning, Spencer!" Eloise smiled, about to set her son in his high chair before Spencer held his arms out. She chuckled and handed the baby to him. "Would you like some waffles with that? I was just getting ready to whip some up for Klaus before he goes to work."

"Ah, hey, that'd be great! Thanks much!" Spencer beamed, giving the baby's cheek an affectionate pinch as he held him. "Are you gonna have waffles, too? Are ya?" he hummed, and the baby reacted with another delighted squeal. 

"Do people frequently just...waltz in whenever?" Leon couldn't help but ask Eloise while Spencer was busy with the baby. 

"Oh, all the time!" Eloise smiled, clearly delighted with having her friends around whenever. 

Leon couldn't help a depressed sigh as he went back down the hall, thinking of how Jolene would probably punch somebody's teeth out if they went into their home unannounced. He missed her terribly. 

That third night, Leon opted out of the guest room and the basement, and instead lay on the cozy loveseat in the nursery. Little Leon snuggled against his chest, sleeping comfortably with a blanket tucked around him. The doctor had tried sleeping on the love seat while the baby stayed in his crib, but the latter wasn't very happy with someone being nearby and NOT holding him, so Leon eventually just scooped him up. Leon himself was nearly asleep when he felt a presence, and he opened his eyes a crack to see Klaus standing in the doorway.

"Oh! Sorry...." Klaus said softly. "Eloise and I can usually hear the baby breathing on the monitor..." he said, looking to the small device situated on the side of the crib. "I-I got a little worried...."

"It's fine.....he's comfortable like this...." Leon said, gingerly rubbing the baby's back. "He's very easy to please...."

Klaus smiled softly and nodded, about to go back to his bedroom before coming to sit at the edge of the loveseat. He was quiet a moment before asking, "You don't like staying here, do you?"

Leon looked down to Little Leon when he stirred slightly. "It's not that I don't like staying here, Klaus, I just..."

"You miss your own home, of course...."

"And Jo," Leon sighed. 

Klaus nodded before looking to Leon. "Maybe it's not my place to say, but....Maybe you should talk with Sebastian." When Leon only glared at him, he fumbled over his words to continue. "Er--well--I know you two aren't fond of each other...But Jo has known him for years and trusts him...And he only wants her happiness..." Leon snorted and rolled his eyes. "He wants her to want him. That's why he only comes around when his allergies are giving him grief..." "To be fair, the man seems to be allergic to most things, so I doubt there are many times when he isn't suffering in some way or another..." Klaus shrugged. "I-It's something to think about...I would suggest asking Phineas to intervene, but Dahlia is still recovering from that rough birth of hers a few months ago...I doubt this is the sort of thing they'd want to deal with at the moment....What about Lionel?"

Again, Leon rolled his eyes. "What's Lionel going to do? Cry? Hide behind his Pyro girlfriend?"

Klaus was prepared to argue before nodding. "Ah, true....Well, with Phineas and Lionel out, I think Sebastian is the only real solution you have....Unless Jolene decides she wants to see you again. Which doesn't seem very likely at this point. It's hard to tell how she's feeling...."

At this last word, Leon straightened up. "Feeling! Eloise---"

"Please, please don't ask that of Elly..." Klaus winced. "She hates to tap into people's emotions without permission..."

"Then she can get Jolene's permission!"

"Shhh, you'll wake Leon..." Klaus shushed him softly, though the baby remained sleeping soundly.

Leon shook his head and sighed. "Look, Klaus, I know it's hard for her. But I think it's harder for her to know how much pain Jo is in...."

Klaus considered this a moment before biting his lip. "...I'll talk to her. But you know she'll say yes just because she loves you so dearly...."

Leon briefly felt a touch of heartburn, before realizing it was the warmth of knowing she cared for him so much. "And I'll tell her how dearly I love her, too," he said softly, hoping Klaus knew how desperate he was for this. "You know I never even consider uttering something like that...."

Klaus sighed and reached to place a hand on his son's back. "Like I said....I'll talk to her...."

---------------------------

"So?" Leon couldn't help but practically pounce on Eloise the next morning when she came back through the door. "How is she feeling?"

Eloise sighed and ran a hand through her wavy dark hair. "She feels like she never wants to see you again."

"I know, she already told me that..."

"No, you don't understand," Eloise said in a serious manner that was a little unsettling. "People can say whatever they like. You could look me in the eye right now and tell me that you were excited to do something, but if you really were dreading it, I would feel it. I felt the hate in her heart, Leon. Well, I did before she threw a test tube at me and screamed for me to leave. Her emotions are on a rampage and she's losing her mind. Not to suggest that it was all there before...."

Leon swallowed a fierce lump at her description of Jolene's damaged heart. He groaned and rubbed his temples. "I....I suppose I have no choice but to go to Sebastian...."

"Oh!" Eloise beamed, all smiles once again. "I just love Sebastian! Let me get my coat, and I'll go with you!" ------ He shouldn't have brought Eloise.

"Did you bring me my ex-daughter-in-law so she could ensure that I don't mercilessly tear you limb from limb for what you said to Jolene?" Sebastian hummed pleasantly to Leon, pouring Eloise a hot cup of tea.

Leon desperately wanted to snatch this pompous ass by the collar, but he knew that would only earn him further anger from Jolene. Eloise smiled kindly to Sebastian, and Leon couldn't help but feel a pang of resentment that she didn't defend him right away. He could instantly tell that she felt this negativity, and she gave him a calm expression that read, Just wait. "Sebastian, you're an absolute gem. I was wondering, and you're more than welcome to say no, but...." Out of nowhere, her smile faded. Eloise's plump bottom lip trembled, and she sobbed weakly into her hands. 

Sebastian's polite expression faltered, and his brow knit worriedly. "Eloise? Dear, are you quite alright?"

Leon remained quiet, only able to blink in surprise at her sudden change.

"It's-- I'm so sorry, Sebastian, but...This has taken such a heavy toll on me..." she breathed, taking a handkerchief to dab at her eyes. "I feel everything Jolene is so heavily, and....she's so miserable...I've tried everything to get her to open up...But I think the only thing that could possibly help her is reconciling with Leon...."

Sebastian frowned as he looked to the other German gentleman. "Why would that assist her, my dear? All he's done is break her heart."

"He IS her heart, Sebastian," Eloise said softly, sniffling as another round of tears streamed down her cheeks. "She loves him with every inch of her being...we just have to get her shell to crack so she can remember that..."

Sebastian rubbed under his chin as he considered this. He looked between Eloise and Leon before sighing deeply. "...Fine," he said to Leon. "I'll help you."

Out of the corner of his eye, Leon caught a brief glimpse of Eloise's calm, victorious smile. Her acting abilities were honestly a little frightening. He wondered if she whipped out those tears and trembling lip to get what she wanted from Klaus. But then, Klaus would probably run naked in public if it was what Eloise wanted from him.

"D-Danke..." Leon said to Sebastian, and showing that appreciation towards this bastard felt like it drained a decent five years off of Leon's lifespan. "Whatever you'd like as payment, it's yours...."

Sebastian smiled kindly once more. "Oh, don't worry about that. I'll have a lovely time with this as well."

"O-Oh...you will?"

"Of course! I'll get to stab you, so that alone will provide a nice afternoon."

Leon bristled, thinking he surely had to be joking. But Eloise smiled encouragingly, as if the promise of being stabbed was somehow absolutely ideal. "Trust him. Everything will be just fine, Leon!" she promised with a confident nod. 

Or, maybe she was just acting again.

[kaciejdavis]

Not What We Have Dreamed Of.

Craig and I have decided that we are going to share our journey that we have been on since December of 2017. From miscarriage to infertility. If you choose to follow the post we are asking for no negativity. If you have something negative to say keep it to yourself. We know by bringing this out into the open we are opening it up to peoples opinions and thoughts. But we ask that you please just be positive with us through our journey. We are also not sharing for sympathy. We are sharing shed light on this because honestly this is not a very talked about topic. And what I’ve been learning is it should be. We should be more aware.

I will be trying to make a post a day until we are to current day/situation.

This does get pretty emotional and pretty detailed. Continue at your own risk.

———————————————————

When Craig and I started dating we would often talk about our future. What kind of jobs we would have, where we would want to live and the family that we would want to start. We had always agreed on three kids. In hopes that maybe it could be two girls and a boy. Though we don’t really get to pick that. We had names and everything picked out. Who knew the journey to get there would be so hard and heart breaking.

We got married April of 2017. We knew we wanted to start trying for kids in 2018. We felt we were ready to begin to have a family. November 2017 I stopped taking my birth control to be able to prepare to have a baby. We figured I had been on it for a while so it wouldn’t happen right away.

Well we were so wrong. I hadn’t been feeling well, but I shrugged it off. I had a cold and was working a lot. I just figured I was sick. Especially since I seem to get sick so easy! I should of realized somethings were early pregnancy symptoms but I didn’t. Not until I was late. I figured well it could just be late. I seemed to have a super late period once or twice a year. But something told me to take a test.

I remember the day pretty clear. It was Saturday December 23 2017. We had some Holiday cookie making planned with my Sister in Law and a Friend. We were making cookies and we talked about how I was late but figured it would start any day. However after I left drove to Target and bought a pregnancy test.

I left Target and went straight home and into the bathroom. I peed on the stick thinking it would blare negative. Little to my surprise there were two lines. So I tested again the next day. They were still there. I was pregnant and super excited. Craig on the other hand was still in shock or really just couldn’t see the lines. We didn’t think it would happen so fast.

It was Christmas Eve and we were busy helping get things ready for Christmas that we didn’t want to say anything to anyone yet. I mean we had just found out so we wanted to wait to tell. I hadn’t been feeling good so I had to call it a night around 12am. I went to bed and work up the next day. It was Christmas. It was an exciting fun filled day!

Later in the afternoon I began to spot. I was a little freaked out. But I figured it’s early this is normal. Then I remember feeling something weird. Like a gush but when I went to the bathroom there was no blood. But my pad was wet. I definitely thought it was odd. But there wasn’t blood and I wasn’t cramping. Until the next day.

I woke up and the pain was unbearable. And I had started bleeding. But not light like my period just started. It was a lot. We had family coming over for breakfast and some were already on their way. So we got up, got the house ready and I forced myself to push through. When everyone went home I decided we need to go talk to my parents.

We drove over there and I was just scared. I wanted to talk to them face to face. I was still on my Moms insurance and didn’t need her shocked to see an ER visit. We explained what was happening. My mom said it was best to go to ER so that’s what we did. And that’s where the real nightmare began.

We went to McLaren and told them what was happening. They asked for a urine sample and had me wait to go back. I gave them the sample and we went on back and got the results the test was positive. They drew my blood, did a cervix check and an ultrasound. The ultrasound showed nothing. And according to ER my cervix was shut. But the HCG level were very low. They stated they could not confirm anything and told me it was probably my period and to go home.

I was so upset and frustrated. I knew this wasn’t my period. The pain I was feeling was so much worse than if it was my period. I went home and was crushed. Emotionally all I could do was cry. Physically all I could do was lay in bed and hope the pain would stop.

I tried to go to work the next day just to be a total wreck and for my super understanding boss to send me home. That I will never forget. I ended up taking a couple days off. And going to my primary doctor. Who knew things would just keep going south.

I went to my doctor for a follow up and for an OB Referral. The Nurse Practitioner I saw just said I’m sure everything’s fine. Go get your blood drawn and we will call you with the results and a referral. I said okay and made my way to the lab. They drew my blood and I went home.

I returned to work as normal and continued to push through even though all I wanted to do was be at home. I waited for the call. A week had gone by and no call. I finally called them on my lunch break. They couldn’t find my labs and hadn’t sent a referral out. I was livid. They said they would follow up with the lab and call me back. Well they called back and told me the lab claimed I never even came in. Now my emotional self was just angry.

I took it upon myself to find an OB since they didn’t seem to care. I went to Alliance which was recommended to me by several people. I remember calling them and just crying on the phone explaining everything to the receptionist. I was so over it all and so frustrated and sad. They got me in the next day. And we would finally get answers!

They were able to confirm I was pregnant and about 6weeks along when I lost the pregnancy. They were able to find the lab work that my Primary office claimed I didn’t get done. And on top of that they asked if I knew I was RH-. I looked at them and said no.... what is that. I had never seen a Doctor get so frustrated. Turns out the hospital tested my blood type and failed to disclose that I was RH- and needed a shot. So I could carry the next pregnancy. Let me tell you, that was one of the most painful shots I have even had. But I was thankful to find someone to hear me out and listen and give answers.

We thought that this would be the end of the crazy. We thought it will get better from here. Little did we know this was just the beginning.

❤️KJD

[phawareglobal]

Debra Hines-Bruce - phaware® interview 261

Pulmonary hypertension patient, Debra Hines-Bruce discusses her PH diagnosis and how a chance encounter at a patient conference turned into a marriage proposal.

My name is Debra Hines-Bruce and I am a pulmonary hypertension patient.

It started out in November of 2015. In 2008, actually, I decided that it was time to take over my life. I was 326 pounds, miserable, in a class teaching health and a light bulb went off. “How can you teach health and you're not healthy?” So at that point, I decided to start dieting and exercising and that's exactly what I did. I worked hard, I changed my diet. I worked out every day, sometimes twice a day, and I was successful. After two years, I lost 140 pounds, and I continue to keep it off.

After that, I kind of plateaued and weight wasn't coming off the way it should. So, I decided to join a boot camp. And I did, I joined the boot camp and it was awesome. Life was great. So, I normally have a yearly exam with my doctors. I have wonderful doctors, and I just have a yearly exam just to do a yearly checkup to see how I'm doing. It was Friday morning, November 20th, 2015. I had taken the morning off to go to my doctor's appointment. Now, prior to my doctor's appointment, I did my normal boot camp, 4:30 a.m. boot camp. For some reason, that boot camp just didn't feel like it did enough. So, one of the ladies that was in the camp with me asked if I wanted to go to the gym afterwards, and so we did. We decided to go to the gym after boot camp. I felt it then. It was good. It was a great boot camp.

So, after that I went home, showered, and went to the doctor's office for my exam and he said, "Deborah, your lab results are awesome. You are my hero." I laughed because he's been my same doctor for over 20 years and we have that relationship. So, I laughed it off. He was like, "Well, why are you here today?" I was like, "Well, it's for my yearly exam, you know, just to check up and see how everything is going." Then he asked me if I had any complaints and I told him, "You know what? Not really, but every now and then I notice that I'm short of breath." He was like, "Okay." So he puts the oximeter on my finger and it was at 76. From what I hear 92 too is normal. So he said, "Well, since you have a history of asthma, let's do a breathing treatment." We did the breathing treatment and right after the breathing treatment, he checked my oxygen levels again and they were at 86. He said, "I'm still not happy. I want you to go upstairs and have a chest x-ray."

So, I did and came back down and he didn't tell me what was going on or anything. He looked me directly in the eye and said, "Are you comfortable driving yourself to the emergency room?" I said, "Yeah." He said, "Just get there and tell them I sent you and they'll be ready for you when you get there." So, I got to the emergency room and they started triaging me and everything, and unfortunately, I had to park far away from the emergency room itself. At that point, they can really see my shortness of breath and I really noticed it then. I don't know if it was anxiety along with the exertion, but I was short of breath, and he told me that we have to run several tests on you so we're going to keep you overnight. I was like, "Okay, cool, I'll be going home tomorrow."

Well long story short, I ended up staying in the hospital in ICU for 10 days. My hospital stay was a total of 13 days, and then they told me that I was diagnosed with pulmonary hypertension. Basically they told me, and this broke my heart, that well you really shouldn't go out and buy a house or a car because the life expectancy is two to three years. That broke my heart, as well. When I did research on the internet, there was nothing saying anything different. It pretty much the same information that this is the life expectancy. I was at Long Beach Memorial.

At that time they didn't have a specialist for the pulmonary hypertension, so they referred me to UCLA with Dr. Shapiro. But this was November. Her first appointment was February. I couldn't get in until February. Now mind you, I had to go home with oxygen, wear oxygen 24/7. At that time, I was being a little vain. I was 48, I'm too young for this. When I thought of oxygen, I saw older people with oxygen. I'm like, I'm too young for this. So I pretty much stayed in the house for about a month before I decided to go out.

The only thing I did before I saw Dr. Shapiro was go back and forth to my doctor's office. During that time, before I even saw Dr. Shapiro, I did have two other hospital stays, which were scary. I finally saw Dr. Shapiro in February, and she is a firecracker. The first thing she said to me was, "I think it's important that you join a support group. There are so many others that you can share your story with and that can relate to what's going on with you." At that time, she wanted me to start two new medications, which were Letairis and Adcirca, and so I did. I didn't notice an immediate change, but I did start to feel a little better and then as time went on I felt much better.

We did a heart catheter six months after that, so that was in August, and my numbers were still kind of high. She said, "It looks like we're going to have to start that third medication." The third medication was the IV Remodulin, and so that's what I'm currently on, those three medications. I feel a big difference. I feel like I can run a marathon. Life is wonderful. I am happy.

Just to go back a little, in 2016, I went to my first PH conference and you know what really amazed me so much was the little kids. To see how they handled it. Oh my gosh. There was one little kid, Jack in particular, that just, my heart just broke when I saw him. To see his spirit, it just made my heart feel so much better. Then just to be around people who knew exactly what I was experiencing.

One Saturday morning, there was the breakfast where you actually met with a physician, the round table. Everyone got together and I met this young man and he was like, "I would like to hear more of your story." I was like, "Okay." I wasn't secure enough to give him my telephone number so we switched Facebook information. But he did have my room number to the hotel. I did give him that. He was like, "Well, do you think I can call you tomorrow?" I was like, "Sure, that's fine." So he did, at 7:00 a.m., and I was like, "Okay, I didn't mean that early. Can you call me back in a couple hours?" And he did and we had great conversation.

Long story short, that man is now my husband. He's also a PH patient and we have been going through this together. It was scary to even think about marrying someone with the same disease. What happens if we both get sick at the same time? So, I decided to not, to let the negative go. Think about the positive, think about the life that we have together now and let's just make the best of that. So, that's what we've done. If he's feeling bad, I'm there to take care of him and vice versa. He's there to take care of me. That has just been wonderful.

Now we co lead the PH support group for Dallas, and that has really been amazing. I love it. I think that's my purpose. I have to say that I have been blessed. The only time I really complain is when two things happen; when I totally forget that something is attached to my body and I just walk away or just want to jump in the shower and then realize that I have to cover my site or uh oh, maybe I pulled it out because I forgot. It's like I have to train myself. You have this new thing connected to you, so you have to be aware of it. So, I get frustrated with that part. Also, when I forget to mix, if it's late at night and I don't want to mix. So, that's when frustration comes. But it comes and goes because, of course, I'm going to mix.

The other thing is, I don't know why it happens this way, but as long as I am busy doing something active, moving, I'm fine. But as soon as I lay down for the night, that's when my body starts to ache. That lasts, for the most part, for about an hour every night. Every single night. I get over it, but I know it's coming. So that' the hard part.

My name is Deborah Hines-Bruce, and I am aware that I am 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 

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

[ellymackay]

Struggling With Distraction? Here’s How Sleep Can Help (Or Hurt)

The following article Struggling With Distraction? Here’s How Sleep Can Help (Or Hurt) was first published on https://www.ellymackay.com

There are a lot of distractions challenging us in modern life. There’s a pretty good chance you’re reading this article on your smartphone. That ever-present device is one likely prime culprit in your battle against distractedness.

Another major contributor to distraction? Lack of sleep. Brand new research on sleep deprivation looked specifically at how lack of sleep affects distractedness. In the largest study of its kind on sleep deprivation, scientists found that sleep deprived people have a much harder time rebounding from distractions than people who are well rested.

Distractedness can seem like a minor problem, not least because it happens to so many of us with such frequency. An incoming email pulls us away from completing a timely task at work. The blip of a news alert causes us to lose our place in an article or a book we’re reading. But distractedness is a real and serious issue, with costs to productivity, accuracy, and safety.

Here’s what the latest research has to say about how poor sleep may be contributing to your distraction.

Lack of sleep magnifies distractedness

This new research comes from scientists at Michigan State University, who looked specifically at the effect of sleep deprivation on people’s ability to complete a task that involves following directions and executing multiple steps. The study included 234 people, who came to the sleep lab in the evening. Between 10 p.m. and midnight, each of them worked individually on a procedural task that required several steps to complete. While they were working participants were periodically interrupted. These repeated distractions meant participants had to reacquaint themselves with where they were in the sequence of steps required to finish the task.

At midnight, half the group went home to sleep. The other half remained in the sleep lab, and stayed awake for the remainder of the night.

The next morning, all 234 participants gathered again in the sleep lab, where researchers had them work on the same procedural task, with the same periodic interruptions.

The night before, everyone had successfully completed the task, meeting basic criteria for accuracy established by the scientists. The next morning, however, things went very differently. Researchers found a significant divide had opened up between the performance of the rested group, compared to the sleep-deprived group.

Among the sleep deprived participants, 15 percent failed to complete the task. Among the rested group, only 1 percent failed to do so.

The sleep deprived people who were able to complete the procedural task made more errors than their well-rested counterparts. And the number of errors made by sleep-deprived individuals increased the longer they worked on the task.

The costs of sleep-related distraction

Scientists in this new study found the increased distractedness among sleep deprived people was related to a cognitive skill known as “memory maintenance.” That’s our ability to hold relevant information in our memories and retrieve it efficiently.

In the case of the study, impaired memory maintenance meant the sleep deprived people were less able to pick up where they left off in their task sequence and carry on without making errors after being interrupted.

In our regular lives, the implications of impaired memory maintenance are pretty vast.

This latest research strongly indicates that small distractions have magnified complications when we’re sleep deprived. That stands to have a major impact on our productivity. Someone pops their head into your office, and it takes you longer to settle back into focusing on the project in front of you. A text message interrupts your monthly billpaying or bookkeeping, and you linger that much longer on your phone before returning your attention to your finances. Think about all the unavoidable distractions you face during a day, and it’s not hard to see how these small, seemingly insignificant interruptions can add up to some pretty dramatic productivity losses.

As the study shows, impaired memory maintenance that results from sleep deprivation also affects our accuracy. When that question comes at you at work, and it takes longer to get back to your proposal, you’re also more likely to forget to include a key piece of information. When that text message interrupts your bill paying, you’re more at risk for transposing numbers on a check, or getting a due date wrong. Taking a test? You’re likely to have a harder time retrieving the right answers when you need them if you’re sleep deprived—even if you’ve committed that information to memory.

This increased risk isn’t limited to “small” errors alone. And let’s face it, even the smallest errors can add up, piling frustration and stress onto our days.

This study also showed us that the longer we try to focus on tasks that involve multiple steps, the more likely we are to make mistakes, when we’re sleep deprived.

When we’re talking about sleep deprivation and distractedness, safety is another huge issue. For people with jobs in sectors such as public safety, health care, and transportation, the degree of their distraction can mean the difference between life and death. Catastrophic events, from the Exxon Valdez oil spill to Three Mile Island and the Challenger space shuttle explosion have all involved human error believed to be related to sleep deprivation. We hear all too often of rail, air, water, and road accidents that involve lack of sleep. Sleep-deprived doctors are more likely to make mistakes during surgery and non-surgical procedures, misdiagnose conditions, and dispense the wrong drugs. Police officers who don’t get enough sleep make more administrative errors, become more aggressive, and are more likely to fall asleep when driving on duty.

Then there’s our own sleepy driving to be concerned with. Drowsy, distracted driving contributes to more than 100,000 car accidents a year, according to the National Transportation Safety Board—and that’s a figure that many safety experts think is actually way too low an estimate.

It’s not only motor vehicle accidents that need to concern us when it comes to sleep deprivation and magnified distractedness. Accidental injuries at work and at home all become much more likely when we’re lacking sleep.

The relationship between sleep and memory

Decades of scientific research has established the powerful links between sleep and memory. High-quality, restorative sleep helps the brain make and store memories effectively. On the other hand, a lack of sleep, as well as poor quality, restless sleep, impairs our ability to make memories, making it harder for us to learn, store, and retrieve information.

But we haven’t yet learned all there is to know about the relationship between sleep and memory. Far from it. Scientists continue to make new discoveries, and break new ground in understanding the role sleep plays in helping—and hindering–our brain’s memory functions.

Just a few years ago, we saw the first study showing specific evidence that sleeping well may improve our memory organization. Memory organization is a term that describes our brain’s complex ability to strategically sort, categorize, and summarize information, to make it the most useful and easiest to retrieve when we need it.

Another fascinating study from a few years ago found that sleep deprivation can actually increase the risk for developing false memories. And in a separate, but potentially related study, the same Michigan State scientists who conducted this latest research on sleep and distraction found that sleep deprived people are significantly more likely to sign false confessions during police interrogations. The odds of signing a false confession, scientists discovered, were more than four times higher for people who hadn’t slept in 24 hours than for people who’d slept 8 hours the previous night.

And there’s more brand-new research about sleep and memory that’s of interest. Scientists at the UK’s University of Birmingham have discovered that distinctive brain activity that occurs when we remember things when we’re awake reappears during sleep itself. Identifying memory-related brain activity that occurs during both wakefulness and sleep could help scientists gain a better understanding of how memory works, and how sleep contributes to memory working well. This new information may also pave the way for a better understanding of memory disorders, including Alzheimer’s disease and other forms of dementia.

How to cope with distractions when you’re sleep deprived

While we can all work to limit the distractions in our lives, much of what distracts us in any given day is beyond our control. To limit the negative impact of distractedness on your productivity, accuracy, and safety, keep these strategies in mind:

Get plenty of sleep. You knew this was coming, right? As this latest research reveals, getting enough high-quality sleep is one powerful way to protect yourself from excessive distraction. Schedule regular bedtime and wake times that allow you plenty of time to get the sleep you need (for most of us, that’s between 7-9 hours a night), and stick to that schedule consistently.

Don’t drive when you’re sleep deprived. This is another fundamental piece of advice that bears repeating. Your safety and the safety of others may depend on it. This is about more than not driving when you’re feeling actively sleepy. That’s a no brainer—or at least it should be. We’re pretty terrible at gauging our own sleepiness, and we tend to overestimate our abilities to focus and concentrate. Even if you’re not feeling sleepy, sleep deprivation on its own puts you at greater risk for falling asleep—or having a magnified moment of distraction—behind the wheel. Play it safe and get someone else to drive, or make other arrangements.

Schedule—and re-schedule—the time you spend in complex, concentrated work.  As this new study shows, the longer you concentrate when sleep deprived, the more likely you are to make errors. If you’ve had a poor night of rest, think about limiting or re-scheduling the time you’ll spend engaged in more complicated work until you can catch up on rest. If you can’t reschedule it entirely, at least organize your concentrated work into short stints, with plenty of breaks.

Create extra buffers against distraction. While the most sleep-friendly solution is to not be short on sleep at all, we all know that’s not realistic for everyone, all the time. When you do find yourself short on sleep, be extra attentive to removing possible distractions from your path. Power down your phone, turn off email, text, and news alerts. Close yourself in a quiet room to read, or work from home to allow yourself the additional protection you’ll need from distractions.

If you feel challenged by distractions in your life, that’s yet another great reason to pay more attention to getting the sleep you need.

Sweet Dreams,

Michael J. Breus, PhD, DABSM

The Sleep Doctor

www.thesleepdoctor.com

The post Struggling With Distraction? Here’s How Sleep Can Help (Or Hurt) appeared first on Your Guide to Better Sleep.

from Your Guide to Better Sleep https://www.thesleepdoctor.com/2018/10/16/struggling-with-distraction-heres-how-sleep-can-help-or-hurt/

from Elly Mackay - Feed https://www.ellymackay.com/2018/10/23/struggling-with-distraction-heres-how-sleep-can-help-or-hurt/

[coffeewithmom]

Chronically Ill and Chronically A Woman

Breath Deep. Relax. Meditate. Stretch. Release your stress.

Sounds like I am attending a yoga class, right? This is the advice I received from my doctor regarding my chronic full body pain. My story isn’t unlike many shared by women all over the world but I’ll tell it anyway. At 19 I was awakened out of my sleep by a deep pain in my shoulders and arms. A week later I lost consciousness and laid on my bathroom floor for hours until I was found. A month later I was lying in bed and unknown to me I experienced my first seizure. I say unknown to me because one minute I was talking and the next minute I feel myself shaking and unable to talk but when it was over I recounted it as a sec and found out it lasted almost a minute. At that point I decided maybe I would see a doctor and make sure nothing was going on. This was when I realized that my gender influenced the care I receive. I sat in that doctor’s office being asked repeatedly if there was a chance I was pregnant, HOW MANY kids I have (not IF I had any), or if I could have contracted an STD and despite responding in the negative I was still given test after test to confirm what I had already stated and my original reason for coming in had yet to be addressed. It was also in that same visit that I realized the negative impact being honest with my health care provider could have. In giving my history, I mentioned my prior gymnastic experience, full time job, and relationship and in that brief conversation it was decided I was perfectly healthy just experiencing after effects of my years as an athlete (they said it was a muscle spasm, as though I wouldn’t know what that would feel like after 15+ years of athletics), and that as a woman I don’t handle stress well and so it manifested as my other symptoms.

Feeling defeated I left with no answers and a recommendation for a therapist. BULL SHIT, RIGHT? No CAT scan, no X-ray, not a single diagnostic test except those related to my sexual health because of course the only real issue was if I was a teen parent or carrying some disease I could spread. Furious and frustrated that I was being reduced to my sexual organs and stereotyped as an “emotional woman” I realized doctors may be of no help to me. This would have just been a bad day if this was an isolated incident but over the next 5 years I would have over 10 ER visits and the consistent response of,” your too stressed and need a therapist,” all while my symptoms progressed from my shoulders and seizures to loss of feeling in my legs, excruciating back pain, joint swelling, and migraines. It wasn’t until I tore a ligament in my knee after falling on icy stairs that I was informed that not only was the pain not” in my mind” but that I in fact had Degenerative Joint Disease, Fibromyalgia, Nerve damage, and sciatica. After the initial shock came the relief of finally having an answer but it was short lived.

"To quote Camille Noe Pagan from the New York Times ,” Women are also more likely to be told their pain is “psychosomatic,” or influenced by emotional distress. And in a survey of more than 2,400 women with chronic pain, 83 percent said they felt they had experienced gender discrimination from their health care providers. And then there are the stories that physicians themselves share about their patients. “I can’t tell you how many women I’ve seen who have gone to see numerous doctors, only to be told their issues were stress-related or all in their heads,” says Dr. Fiona Gupta, a neurologist and director of wellness and health in the department of neurosurgery at the Icahn School of Medicine at Mount Sinai in New York City. “Many of these patients were later diagnosed with serious neurological problems, like multiple sclerosis and Parkinson’s disease. They knew something was wrong, but had been discounted and instructed not to trust their own intuition.” "

At my first appointment with my rheumatologist my very male doctor told me that meds would help my pain but before he would prescribe them I should SEE A THERAPIST because women don’t cope with pain well. I couldn’t believe it! Even with a solid diagnosis I was still being told women who deal with menstrual pain, birth children, and cope with more stress a day than most men do in a month can’t handle it well so I should get my mind treated BEFORE my body. I stormed out of that office and he in turn filled out my disability paperwork and instructed his assistant not to schedule me again because I was non-compliant! Over the next few years I retreated into myself, self-medicating, using ER’s when needed and in turn letting my disorders go unchecked which resulted in addictive behaviors, medication misuse, and further damage to my body all because I was afraid to go to a doctor again and be told I was mentally weak. As a healthcare worker I listened as doctors did the same to women all over this country, having hall conversations calling women whiners, wrote in permanent health records that women with real issues don’t know how to cope, and taught new generations of doctors that when women say they have pain instead of treating them they should first test her limits and wait a little longer before giving medicine because it may be “all in her head”. Even today as I received yet another diagnosis I hesitate to inform my doctor when things get bad because I don’t want to appear as drug seeking or mentally weak things I know are untrue but know can affect the help they give me. Every day you hear of women dying in child birth after being ignored when they say something is wrong, diseases going unchecked and yet the medical climate stays the same.

To be a woman and be chronically ill is to have 2 disorders and both can go untreated because of biases that are costing women all over the world their quality of life and sometimes their actual lives.  And I for one have had it!!

#Womanhood #WomenBloggers #WomensHealth #issaBlog #ContentCreator #WritingIsPassion #SharedStory