This will be an unnecessarily long post because I will likely ramble quite a bit, and it’s been a really long time since I’ve posted, and I started writing it well over a month ago, wondering how much of it I was actually going to include once I hit “Publish”. If you get bored before the end, it’s okay…even I’ve gotten bored with it quite a few times, LOL. My original intent of this blog was to be able to talk about this journey, mark milestones, track my progress, and just have a place to “let it all out”, knowing that even if nobody reads it, it’s a safe place to just vent. I haven’t posted in a while. I’ve been keeping it all in. This isn’t healthy and I’ve reached a bit of a breaking point. I need to put it out there into the world so I can get rid of some of this heaviness that has been all-consuming lately (please note, I wrote this first paragraph over a month ago…which after reading the next part, I now realize perhaps I should have solidified this post sooner, lol)
This will be a little backwards and as usual I’ll jump around a bit. But I’ll start with the latest news. Apparently, I had a heart attack. Who knew? I sure didn’t. Okay, let’s go back a little. Last week, my home health nurse (Rebecca, who I love!!) noted that my blood pressure before, during and after infusion was unusually high. She wanted me to keep an eye on it, which I usually do. It’s been pretty good lately which I’ve attributed to my continued use of beef organs (and I’ve been on 2 BP meds for a long while now also). My BP however, wasn’t going down. I meditated, took a Xanax, did everything to relax and the following afternoon, it was 185/120. I texted my nurse and she said to go to the ER. Me, being the great listener I am, went to urgent care. They did an EKG, which was abnormal, they ran cardiac enzymes, which were fine… but apparently the first ones many times are. But my HEART score put me at, in his words, “high risk for significant cardiac event within the coming weeks”… he actually said 2 weeks or 6 weeks but I can’t remember and I could even be wrong about that… I was just sitting there in shock after “significant cardiac event”… I’m forty freaking seven. I asked him if it would be okay for me to go grab my dogs to drop off at my parents house and he said yes, as long as I went to the ER after that. So I called my parents and Karen, we all went into panic mode (when I look back, panic mode would have been if he sent me by ambulance… but still, I was a cross between total panic and complete numbness). Karen met me at the house to get the girls, dropped them at mom and dads and we all headed to Duke Raleigh. Once there, everything slowed… to a crawl, lol. (the entire ER experience could be a long post on it’s own). When I finally got back, I got gowned up, they did a chest xray, another EKG, and ran me through the wringer to try and start an IV (port wasn’t an option, and although she finally got an IV started, it ended up never being used… yay for useless procedures!). The ER PA was very nice (no clue what he said, he was hot… I knew my mom and sis were listening, or hoped they were, lol). He didn’t see a difference in my EKG from January 2017 and this new one (so we were all at this “huh?” moment. The next set of cardiac enzymes came back okay. So the goal became getting my BP down… which didn’t come easily. Mom and I finally left the hospital around 2am… BP still elevated but relatively stable. Both EKG’s would be read by cardiology, I would be seeing my Cardiologist in a couple of days (again, so much of this seems like it was done in the wrong order, but that’s just me). They quadrupled one of my BP meds and all was okay… with the exception of me not being able to unhear “high risk for significant cardiac event within the coming weeks”. You can’t unhear it… no matter how hard you try. Especially when your BP is continuing to average 170/118’ish. So I saw my Cardiologist the other day, and everyone is clueless why all the sudden my BP is so high, but I’m the only one that actually seems to care about it because all he did was add a THIRD BP med in addition to the quadrupled med and come back in 2 weeks. And I might have let it go at that moment, been able to relax a little… until I got the email that his notes had been uploaded. So I’m reading them and it states, verified and signed by him, who I had just seen hours earlier… “Septal Infarct is now present”. So I respond with something similar to a WTF? and he says “yes, that indicates dead tissue in the middle of the heart caused by a heart attack but EKG is 100 year old technology and it’s not 100% definitive so we are just watching it for now”, something like that. So wait… You are solely using 100 year technology that might mistake a boob for a heart attack to rely on for my heart health, and the fact that my BP is suddenly at stroke level, and at some point in the last year I may have had a heart attack, doesn’t warrant further testing “at this moment”????? Yet, stay calm… you don’t want to increase your stress or blood pressure. So, at this point… we don’t know if I have had a heart attack, we don’t know the state of my heart since my stress echo a couple years ago and I’m just supposed to be easy breezy lemon squeezy about all of this… gotcha. Not like I wasn’t already stressed about the oxygen deprivation… yeah, that is the original reason we thought my BP was spiking… or that I missed almost 8 weeks of infusions. Oh yeah… if you haven’t eaten, you may want to grab a snack and a drink at this intermission.
Let’s all go to the lobby, let’s all go to the lobby, let’s all go to the lobbyyyyyyyy and have ourselves a drink….
Okay… so, life with Alpha-1 continues to keep me on my toes…or on my back with as exhausted as I have been over the last couple of months. First thing, my old insurance ended on 3/31. My last infusion through Aetna was 3/30. I didn’t have another one for almost 2 months thanks to incompetence and lack of communication and just failure. So, I’m finally back to getting infusions. I have a home health nurse, Rebecca, who comes each week to give me my infusion. Right now I’m having it done at Karen’s simply because the mere thought of having it done at my house with my girls, well… blood pressure and all. Plus it gives me a chance to get out of the house… see Karen, Grayson, sometimes Ant, (Jack and Abby too!!) and last night my parents came so we all had dinner together. So while I miss my ladies at the infusion center SO much, this isn’t such a bad change. Having a little trouble with my port… it’s moving quite a bit right now, and the huber needles I’m being sent are too large, so we are going through a couple needles each week at this point but if that is the worst thing that happens during the week at this point, I’ll take it!!!! So, this exhaustion. In talks with my Pulmonologist, it was believed it could be due to my oxygen desaturating at night. Over a year ago, when I had my 2nd sleep study for my CPAP titration, my O2 sats were dropping in the low 80’s… So I had a nocturnal oxygen study last month which showed that my O2 was staying in the low 80’s for a significant part of the evening so I need to bleed 2L O2 into my CPAP. Easy enough right? Wrong. Insurance won’t approve it without another full sleep study, and oxygen is ‘spensive (who’da thunk it right??). So, now I’m waiting for that. I’ll say, my previous insurance policy was expensive, but it was AWESOME! My experience with this marketplace plan has been that they would rather me die than pay for anything that’s going to help keep me alive… and it’s only been 2 months. It would be comical if it wasn’t so serious. We knew eventually I would need supplemental oxygen, and hopefully it will just be for the evenings right now, as well as air travel… but I’ll be going through testing in August to determine if it’s needed during the day or for exercise. If you remember the post I posted where my lung function had increased a bit after a while on my infusions… well, I lost that and then some due in some part we believe from not having them for 2 months. So we’ll check my lung function again in August… and I’m due for my annual liver biopsy next month, so I’m really hoping that it hasn’t advanced further. Just hoping for some good news for the 2nd half of the year… surely due some soon!!
So, another thing I’m dealing with but has a funny story that goes along with it (it’s time for some of that right? lol). I have a large uterine fibroid that is happily resting on my bladder. Due to my lungs, surgery isn’t an option unless it becomes an emergency so we are treating it a few different ways… one with “hormonal treatments”. So the first time I picked it up, my favorite tech at Medicap calls and says “Your birth control pills are ready”. I almost peed I laughed so hard!!! I said “you realize I’m not taking these for birth control right??” and he says “hey, I don’t judge, and people are having babies in their 50’s now”, lol. Okay, it’s probably not as funny reading it… but it was one of those moments when I really needed a laugh, so I was really excited that my birth control pills were ready 😉
So, a lot of this part has been written over the course of a few months, and I condensed most of the “drama” into one section… Have you finished your snack? Maybe it’s time for a glass of wine or a cocktail?? (I should get a winery to start sponsoring these intermissions)
So, when I first started blogging, I stated something to the effect of “it won’t always be easy, but it will be real”. A little more than a year later I’m realizing that being real is WAAAAY easier said than done. It’s so much easier just to be quiet. Stay off social media, avoid the phone and just let what happens happen. The “real” can be tough to talk about, and just as tough to write about (if not tougher at times). Real is being accountable and vulnerable. Real can be very humbling, embarrassing but also freeing and empowering. I look at the person I was 10 years ago vs the person I am now, and it breaks my heart. I miss HER so very much. I took for granted how strong and independent she was. I took so much for granted…I put her down quite a bit, didn’t appreciate the small things about her, focused on superficial attributes but I look back and realize, she was really awesome. She was fun, and funny… she laughed… a lot. She had a zest for life and loved being around people. She had a lot of friends that truly seemed to love and care about her. What sits here now is a far cry from that vibrant, fun-loving girl. If I’m honest, I don’t like her very much most days. And I’m trapped with the crazy bitch 24/7. Many days she can be boring, grouchy, sad, and exhausted. She whines (she used to wine, and that was MUCH more fun, lol). She’s scared, terrified at times. And she’s tired…really, really tired… physically and emotionally. She’s lonely. I (same person as she/her… don’t get confused) am very grateful for the support I have had from friends, many on Facebook…some I’ve never met, or barely know are there to hold me up when I feel like I’m falling. I know there are people that are going through so much more. Everyone has their own struggles, spoken and silent, and again, I wish I could be there for all of them (especially Shef who probably isn’t reading this, but checks on me always even when he was going through 2 tragic losses of his own)… I think all of us wish we could be a better friend, and all of this has really opened my eyes to trying to be a better one myself. I am also SO grateful for my family, words will never be enough to thank them for their love and support. So, while I know that the superhero donning a cape with her fist in the air is still in there, she’s hard to find lately, and many days it’s hard to muster up the energy to look for her (she’s probably off wondering a Lido deck somewhere in the middle of the ocean, sipping a cocktail and looking for her lost shoe). Yet I will never stop trying… and every so often, I see a glimmer of that girl. As long as there is that glimmer, there is hope… my glimmer today? Slow dancing with my lab Izzie for a few minutes, lol. She jumped up with her paws on my shoulders, so we danced. It may have only been a minute, but I said out loud “there she is”. Who knows, tomorrow I might shave my legs!!! Yeah, you’re right… let’s not get carried away, lol.
This isn’t all due to Alpha-1, but just a perfect storm of events that occurred over a rather short period of time that I think anyone would have a tough time wrapping their arms around.It’s hard to put it out there and talk about it because people see it as weak, or looking for pity. For me, part of working through all of this is again… letting it all out so that I can try to heal my heart, so I can forgive myself and my body for betraying me… so I can try to find out why this is the path God chose to give me and make some sort of sense out of it all. I also hope that someone else reads it and knows they aren’t alone… that the feelings they feel are normal, they aren’t losing their minds, and it’s okay to expose your weaknesses sometimes and still be a fighter. Even fighters get tired… As for looking for pity? I don’t think most of us seek it out (contrary to some thinking), but there is nothing wrong with every so often needing to hear “you are thought of”, “I’m praying for you”, “I love you”, or simply “I’m sorry you are going through this”? We’re human, not all of us can be superheroes…and thanks to my liver I can’t sit at home and hide my emotions in a bottle of wine every night (but damn I sure wish I could sometimes!!!! LOL!). The truth is, like many other chronic diseases, this disease SUCKS. That picture I posted a while back “Alpha-1 sucks the life out of you”, it’s true in more ways than one. It’s a very scary disease… not being able to catch your breath is and will always be one of the scariest feelings in the world because you truly don’t know when you won’t be able to succeed in catching it. Living alone has always made that a larger reality… Being without my infusions made the reality harder when I realized that literally, I cannot LIVE without these infusions (without a lung transplant). Reality is sobering. It ain’t all rainbows and unicorn farts around here boys and girls… sorry, LOL. The GOOD thing is, I WANT to LIVE and will do whatever it takes to do just that!!!! I’m loving watch my nephew grow into this awesome young man! He’ll be driving soon, then graduating, going to college… and one day, I’ll be there to watch him shed a tear as he watches his bride walk down the aisle, and then love the beautiful family he raises (and HOPE he STILL calls me Aunt Chrissy when he’s 40!!!)… so if you read through this and thought this sounded like I have given up? I WON’T GIVE UP! NOT a FREAKING CHANCE!!! There are days when it’s really tough… and I won’t lie, some weeks, it’s a lot of days. But I still have a tremendous amount of hope that the best is yet to come. Alpha-1 has one hell of a fight on it’s hands with me (and I mean that in the nicest way, Namaste… you know, blood pressure and all).
Lastly, it’s been almost a year since I had full time employment and I somehow still have my house and my dogs aren’t going hungry. It has NOT been easy!! But my business is slowly growing, and I am freelancing whenever I can. I’m also forever and beyond grateful for the fundraiser my sister set up last year and all those that have graciously helped. You will never, EVER know the extent of my gratitude to each and every one of you. It has been an experience that has gone far beyond humbling. It’s been my reality, and I never thought it would be. Just like so many right now think it will never happen to them… but I’m here to tell you, it certainly can. Life can change so quick. I know many are prepared, but I know there are many more that are like me and not prepared at all! And I don’t know how you get prepared… but try to have a plan b, or c, d and e. But no matter what you do, live every single day to the absolute fullest… smile every chance you get, laugh even when you… no, especially if you are alone, tell those you love that you love them… and breathe with purpose.
And one more thing!!!!!! If you pray, pray for my main man Mills! One of the dearest men in my life since I was a baby girl… and a total badass!!! Love you Alan, YOU GOT THIS !!!!!! And all of you fighting your own battles, you are never far from my thoughts or prayers!!
Hugs and love,