{"id":528,"date":"2014-12-12T22:18:05","date_gmt":"2014-12-12T22:18:05","guid":{"rendered":"http:\/\/michelledevon.com\/?p=528"},"modified":"2021-01-02T22:19:28","modified_gmt":"2021-01-02T22:19:28","slug":"so-much-stuff-so-many-thoughts","status":"publish","type":"post","link":"https:\/\/michelledevon.com\/index.php\/2014\/12\/12\/so-much-stuff-so-many-thoughts\/","title":{"rendered":"So Much Stuff, So Many Thoughts"},"content":{"rendered":"

I come here nearly every day to write something and almost never end up posting anything. Sometimes, I write for hours and nothing I say is what I want to say so I don\u2019t post it. I feel I\u2019m better for having written it. I guess I needed to get it out. But it\u2019s not what I wanted or needed to say to someone else to read. Sometimes, I start typing and realize I don\u2019t have a clue what I want to talk about. Other times, I have so much to say, I have trouble focusing my thoughts in a direction to write about. Any way it goes, I end up not putting up a new post.<\/p>\n

Tonight, I spent a good portion of my evening with my head over a trashcan, trying to keep the contents of my stomach on the inside of my body and not the outside. I was partially successful, and that\u2019s all you likely need or want to know about that. Zofran didn\u2019t rescue me this time.<\/p>\n

I don\u2019t know why it happens sometimes. I don\u2019t now what causes it. I don\u2019t know how to make it stop, and I hate it. When things aren\u2019t spewing out that end of me, ti\u2019s not unusual for them to be spewing out the other end of me. This is the lovely side effects of being chronically ill and some of the medications I\u2019m taking.<\/p>\n

Over the past week, my diuretic seemed to have stopped working, so I had some fluid weight gain. It\u2019s always miserable when that happens, because my saturations go down. That makes it hard to breathe and being hard to breathe sort of sucks rocks.<\/p>\n

I told the doc in my appointment that I have learned how to live with pain, but I still haven\u2019t quite figured out the trick about living without breathing yet.<\/p>\n

I\u2019m working on it.<\/span><\/p>\n

I\u2019ve got some new developments going on, but I can\u2019t publicly talk about them yet. When I can, I will be sharing them here. If I share them now, it might affect my timeline if my current docs and such were to see what I wrote. I might just be being paranoid, but I\u2019d rather not take my chances. I hope you\u2019ll check back late next week to read about those developments though.<\/p>\n

My kidney function on my last blood work was good. That\u2019s always a relief when I\u2019m taking such a high dose of such strong diuretics. The rest of my blood work all looked \u2018normal for me\u2019. As we\u2019ve learned, Michy\u2019s got her own version of \u2018normal\u2019 going on.<\/p>\n

I learned at my last visit that my condition is likely more severe than *I* thought it was. But then I thought, you know, that doesn\u2019t change how I have to live, how I\u2019ve been living or anything I have to do\u2026 all that\u2019s change is what I know about it, so what\u2019s there really to be upset about? It\u2019s still the same sucky disease and conditions, so why let it bum me out?<\/p>\n

Well, the why it bummed me out is likely because I was stupid and sort of accidentally went off my antidepressants, and from the way I responded, apparently, it wasn\u2019t a good time to do that. For three days now, I\u2019ve been staring at walls. It\u2019s what I do when I\u2019m depressed. I sort of just\u2026 you know\u2026 stare.. at walls, for hours. Without thinking, really. Without\u2026 doing much of anything, really.<\/p>\n

Depression sucks.<\/p>\n

I\u2019m working on that too. Been back on antidepressants for two days. These ones really work well for me. Haven\u2019t ever had any problems or any noticeable side effects from them except for feeling better and having deeper emotions. I\u2019m still bummed about things on the antidepressants, but they don\u2019t seem so bleak and hopeless. I still get sad and cry and get angry when I\u2019m on them, but it lasts for a shorter period of time and is easier to get myself out of those moments into other emotions. when I\u2019m not on them, though, I tend to get triggered and just keep going down and down until finally there\u2019s that point where numbness kicks in and everything just stops. Oh, God, I\u2019ve rather be in deep, hair and clothes tearing grief than to be numb. I\u2019d rather be in tremendous physical pain than be numb.\u00a0I\u2019d rather ITCH than be numb, and I gotta tell you something, there\u2019s not much worse than itching uncontrollably. I know whereof I speak.<\/a><\/p>\n

So stick with me. When I go radio silent, sometimes, it\u2019s because I need someone else to reach out to me\u2026 you can do that, any time, you know. Other times, it\u2019s because I just don\u2019t know what to say or how to say what\u2019s going on with me inside.<\/p>\n

I do know this business of being sick sort of sucks rocks on steroids\u2026 and I\u2019ve had quite enough of it. But like I also told my doctor this week:\u00a0I\u2019m not anywhere near where I used to be before I got sick, and I don\u2019t care what anyone says about my \u2018chances\u2019 or \u2018odds\u2019 or \u2018numbers\u2019, I\u2019m not ever going to give up trying to gain back all I\u2019ve lost. There\u2019s no point in having lived through everything I should have died from if I give up now.<\/em><\/strong><\/p>\n

On a really positive note: I\u2019ve joined an online support group of other CTEPH sufferers, and it\u2019s been such a blessing to me. I\u2019ve met some of the most amazing people, and all of them \u2018understand\u2019. They get it in a way no one else really can. I\u00a0 know my FB friends mean well, and I love them for all the support they give me, the love, the encouragement\u2013I\u2019d be so lost without them\u2013but at the same time, I realize they don\u2019t always understand what I go through from my perspective, or I have to remember they won\u2019t really recognize the terminology I know from medical stuff, or what the risks of this or that procedure are. When I talk to the folks in the support group, they not only know the terms or about the procedure, but many of them have already gone through it themselves! I\u2019m the type who HAS to know what\u2019s going to happen before it happens. I want to watch, see, hear and know what\u2019s happening through the entire procedure or test or whatever. If I don\u2019t know something, I\u2019m terrified about what\u2019s next. When I know, even if it\u2019s bad, I don\u2019t have to be scared.<\/p>\n

Well, these people have helped me so much with feeling less anxious about things. They\u2019ve understood when I\u2019ve vented. More than that, they\u2019ve shared their own stories\u2013successes, failure, treatments and more\u2013and I learn so much from reading their words and realizing they are just like me, how they feel, what they think, the things they fear. And in turn, I have some information sometimes for a newbie that can help them too, and I feel like I make a difference too, like these other folks make a difference for me.<\/p>\n

And it was this blog right here that sort of indirectly led me to finding this support group. For that alone, this blog has done its job for me.<\/p>\n

This is such a rare condition that, in the entire world, there\u2019s only thousands of people\u2013not even hundreds of thousands\u2013with this condition. And of the ones they know about, only a handful correlatively have ever had the PTE surgery that I hope to be eligible for in the future. Without the internet, we would be quite isolated and alone. With the internet, we can share our stories, and most importantly share our treatments that work with one another. It\u2019s like an ongoing, living, breathing (we hope to stay that way!) clinical trial of sorts. I think what doctors can learn from us all talking to one another would be immeasurable if someone would just come in and do the work! We\u2019d all likely be quite eager to help out!<\/p>\n

I\u201dm finding so many similarities amongst us, and yet we\u2019re all from different walks of life and ages and locations and races and ethnicities and weights and all other factors that might influence things medically. But I learned today alone that a whole lot of CTEPH patients were diagnosed, erroneously, with sleep apnea before they discovered the CTEPH. I already knew a lot of us had been diagnosed with asthma (I never was, but many, many were), only later to learn it never was asthma! I also learned that for those with sleep apnea or who use a positive airway pressure machine for any reason, most of the CTEPH patients can\u2019t tolerate CPAP and have to be titrated on BiPAP instead. There are many other strong correlate and causative associations I\u2019m seeing as patterns. I think a doctor with more knowledge on what to look for and the questions to ask would find there are even more similarities, from commonality in misdiagnoses, to commonality in the path to proper diagnosis and treatment, to working treatments desperate doctors tried or failed ones too (\u2019cause failures can often teach as much or more than successes!)<\/p>\n

Our support group and small corner of the world is a wealth of information to the right researcher or doctor\u2026 and we\u2019re such a great bunch, I know tons of us would jump at the chance to further research so maybe this horrid condition can be prevented!<\/p>\n

That would be so awesome!\u00a0I just want to give a big shoutout to the CTEPH support group folks on\u00a0 Facbook<\/strong>. You guys have been amazing to me. If anyone who reads my blog has CTEPH and wants to get into this group, message me and I\u2019ll send you the link. These are very welcoming people\u2013no cliques here, all warm, open and inviting souls who will laugh and cry with you, pray with and for you, and get pissed off with you and for you when you need it!<\/p>\n

Anyway, enough for now. My head is pounding and I\u2019m ready to call it a night\u2026 only 1am. A little early for me, actually.<\/p>\n

I love and need you all!<\/p>\n

Love and stuff,<\/p>\n

Michy<\/p>\n","protected":false},"excerpt":{"rendered":"

I come here nearly every day to write something and almost never end up posting anything. Sometimes, I write for hours and nothing I say is what I want to say so I don\u2019t post it. I feel I\u2019m better for having written it. I guess I needed to get it out. 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