myusernamehere

[myusernamehere]

An Open Letter to All Who Know Me:

Hi everyone,

I have been meaning to update you all about what’s been going on with me, but it’s been hard to find the right opportunity and the right words. As many of you know, I was born with a form of Muscular Dystrophy known as Spinal Muscular Atrophy. I had a brother named Steven who died from this disability when I was 11, and he was nearly 13. My disability is progressive in nature, and thus, it continues to get worse as I get older. Over the last 4 or 5 years, my health has started to decline a great deal. I have a severe scoliosis of my spine, which affects everything from my positioning to my breathing to my chronic pain. I have also developed arthritis and nerve damage in various limbs which causes pain and swelling. And now I have IBS, which is Irritable Bowel Syndrome. This causes me a great deal of discomfort everyday.

In the past year, sleeping comfortably has become harder and sitting in my chair is no better. Back in February, my chest started to feel like it was on fire, and this pain in my chest has spread throughout my back and my shoulders. I have medicine that helps it sometimes, but it does not always work. So oftentimes I feel like I have a full body fever, even though I don’t, and I’m always so hot. My anxiety makes all of my pain worse. And lately I have been more anxious than ever.

Some of you may remember, I was hospitalized in January of 2015 because I was suctioning phlegm out of my throat and injured my tonsils. I could not swallow for several weeks and had to start pureeing my food. Although I tried to keep my swallowing function in tact for as long as possible, my muscles have continued to grow weaker and weaker, and even though earlier this year I was still able to swallow partial whole foods during the day, my swallowing crashed completely over the summer. I noticed that I wasn’t able to swallow pureed foods, liquids, or even my own saliva.

My nurse told me to go to the ER, and they set me up with a speech pathologist whom I went to see when my brother, Brian, was visiting. At the follow up swallow testing, they saw that things were actually very bad with me, and I had to be immediately admitted to the hospital. When I swallow, some of it goes into my trachea, and it can go into my lungs and cause pneumonia. Basically I aspirate on my own saliva, but the problem is that I don’t feel it because my throat muscles are so weak.  

I had to have an emergency feeding tube put into my stomach, and I am no longer able to swallow anything for the rest of my life, not even water or medication. Because of my IBS, this feeding tube causes me a great deal of pain and discomfort everyday. I’ve tried various medications and formulas, but nothing seems to be helping me. Some days are worse than others, but I don’t know how to fix it because the thing I need to sustain life is the very thing that is causing me so much pain. And then that pain spreads to my back, my chest, and my neck among other places. It also causes me to use the toilet more often than usual, which is a very time-consuming and exhausting process. The worst thing is that my swallowing gets really bad at night, and I feel like I can’t swallow anything because it just pools in my throat. This makes me more anxious, and sometimes I can’t sleep, which is bad because I need sleep to recover. I also have a lot of extra phlegm that I am constantly having to suction out of my throat and my nose. I sometimes can’t even leave the house without my portable suction, and it’s super loud. Not convenient for the movies or a concert or things like that.

The speech pathologist in the hospital basically told me that things are going to continue to get worse, and there’s really not a whole lot I can do to strengthen my throat muscles because the problem is that my brain is not transmitting the proper signals to my muscles to make them work. My spine is going to continue to get more crooked, and there’s nothing I can do to fix it. So basically my pain will continue to get worse, my breathing will likely become compromised because of my lungs, and I won’t be able to swallow at all at some point. Whether I end up with pneumonia in my lungs that I can’t cough up or I choke on my own saliva, the doctors basically looked at me and said there was really nothing that could be done.

I am in the end stages of my disability, and I’m going to die. They didn’t give me an exact date or anything like that, but everyday feels like a struggle now. My life feels exhausting all the time; even just waking up in the morning feels like a daunting task. Knowing how much pain I am going to be facing is bad enough, but the fear and the anxiety and the depression that’s come on as a result can feel debilitating. No matter what awful things I’ve been through in the past, and I’ve been through a lot, I always felt like I wanted to get up and face the day. And now I don’t always feel that way. Most of the time I don’t. I dread it.

To be clear, I am not suicidal. But sometimes I don’t know whether I am more terrified of dying, which petrifies me, or living the life that I have now. I am not writing this for people to worry about me or feel sorry for me. I just wanted to share all of the crap that I’ve been going through and get it off my chest. I am hoping that by stating this as plainly as possible, it will help me face what is inevitably coming. I’m grieving right now. I am trying to reach acceptance.

I have no family in Boston. My parents are in Florida, and I need to go be near them now. They were here for a month with me, but they had to go back home to get things set up down there because I will be moving there sometime in the near future. I’m just trying to wait until I get my new wheelchair. The problem is that I cannot live in their house for a variety of reasons, so I will likely be living in some type of rehab/nursing home. And thinking about my future and how much worse it’s going to get also keeps me anxious, depressed, and sad. I’m just not safe by myself anymore.

I’ve lived on my own since I was 18, and I have no regrets. I love Boston. I love my independence. But I am scared, and I can’t do this by myself anymore. I need more specialized care than ever, and I don’t have the staff to do it. I love the people who take care of me. They are my friends and family here. But I need more help than a lot of them can give me now, and everyday I worry about whether or not somebody’s going to be able to come in. I was able to work through that before. But I am less capable now.

I also stress about having to teach a bunch of strangers who don’t know me how to take care of me, especially in a rehab type place. With all of my pain and anxiety and stress, trying to teach anybody new about my body and all its changes seems so much harder now. It’s hard in my own home, nevermind in a setting where I won’t have one-on-one care.

Thank you to everybody who has reached out to me since my hospitalization and who has sent love, thoughts, prayers, and support my way. I appreciate it more than you know. And I am trying to reclaim some sort of normalcy in my life. I am sorry I have not been around on social media or texting as much. The idea of explaining to everybody what’s happening to me is disheartening, so I kind of just wanted to do it all in one post.

I want you all to know that I have not given up, that despite the dark thoughts I often feel and the dark thoughts I have expressed here, I am trying to cope and live my life. I want to spend however much is left of it the best way I know how. But I have my good and bad days, and I will continue to have those. I love you guys. Thank you for being in my life, no matter what capacity you’re there in. Thank you for knowing me and loving me and being kind to me and being my friends and family. Thank you to the people I’ve met in person and the people I haven’t. I have friendships with people all over the world, some of whom I may never get to see in person, but you are no less meaningful to my life. Whether I talk to you every day or every couple of years, I appreciate it, and I appreciate you.

- Lisa

#personal

[myusernamehere]

Ooh ooh! Just as it turns midnight on the East Coast I gotta get my final social media birthday wish in to you! Happy birthday love, my girl with the beautiful brain and loving heart, who fills my world with wonderful tales and really smart questions, and loves the hell out of some of the funniest, smartest, most gorgeous men around. I love laughing and chatting and sharing stories and dreams. Happy birthday dear friend. I love you mucho!!!

Why are you trying to make the cry at midnight? Ha ha. I love you so much my darling Tisha. This is the nicest message. I would say the exact same thing to you my darling. Getting to know you has been one of the absolute best things about being in this fandom. Thank you for loving my brain and encouraging all of my dreams and listening to me ramble for hours on end. I love laughing and chatting with you, too. You've been such a great friend to me. And it is on my bucket list that I shall one day get to hang out with you in person. Also, thank you for recognizing my flawless taste in men. *flips hair over her shoulder* Haha. 

But seriously, I love that we can share that together. And not just our taste in men either. We have so much in common, and I love talking to you about everything and anything. To say I love your brain as well would be an understatement. You are such a beautiful person, inside and out. Smart, kind, loving, talented, open-hearted, and absolutely hilarious. Insert a million other words of praise here. Thank you for entertaining me and making me smile all the time.

#joshs-left-earlobe #Lisa gets a year older

[myusernamehere]

Happy birthday lady!

Thanks Buns! I appreciate you sending me a message.

#peetasbunmyoven #Lisa gets a year older

[myusernamehere]

It's your birthday? HAPPY BIRTHDAY!

It is indeed! Thank you for the message girlfriend! Much appreciated.

#deinde-prandium #Lisa gets a year older

[myusernamehere]

Happy birthday! Hope you're having a great day!

Hey Amy! Thank you for this message. I appreciate it. I got to spend time with my family who I rarely get to see, I went to my favorite restaurant (the Cheesecake Factory), I had some amazing carrot cake, and my favorite person in the whole wide world gave me new music. Plus, I have the most amazing friends, and I have been feeling the love all day. So yes, I would rate this up there as a fantastic birthday! Thank you for adding to it.

#muttpeeta #Lisa gets a year older

[myusernamehere]

I just remembered I still haven't replied to your message! But happy birthday girlfriend! Hope you have a great day!

LOL, I was like, "Where did she go?" But thank you my darling Patricia. It was indeed a great day. Thank you for the birthday wishes. I love you!

#pachipachiko #Lisa gets a year older

[myusernamehere]

Happy Birthday!!! 😍 Hope it's as fabulous as you are!! (And some new Justin fur your birthday!! It's on repeat here!)

Aw, thanks lovie! It's been a really great birthday. I was happy to spend it with my family who I rarely get to see. And yes, new Justin for my birthday. He gave me "Motherlover" a few years ago on my birthday. Ha ha. But, this is the ultimate. Clearly he loves me.

#everlylark #Lisa gets a year older

[myusernamehere]

Happy birthday!

Thanks girlfriend! I appreciate it.

#notanislander #Lisa gets a year older

[myusernamehere]

Lisa!! I know we haven't talked in a long while, but just wanted to wish you a VERY Happy Birthday! :D

Thank you love! It's been a great birthday. Have you been obsessing over Justin's new song as much as I have?

#letitreign #Lisa gets a year older

[myusernamehere]

Happy birthday my love! I hope you have a wonderful Justin filled day!

Thank you Kelly! I love you doll. It has indeed been a wonderful Justin filled day. Let's face it, it's been a Justin filled life. My husband dropping new music as a present to me, clearly. Ha ha. I hope your day has been good sweetie.

#allhailthehutch #Lisa gets a year older

[myusernamehere]

HAPPY BIRTHDAY LISA!!!! I hope your day is wonderful!!

Thank you, my darling Irene! My day has been really lovely. I love you too, sweetie.

#ombradellaluna #Lisa gets a year older

[myusernamehere]

A little love from JT and me on your birfday! 🎉

This is the best thing ever, @burlesonspride. Never gets old! I love you, Mel. Thank you!!

#burlesonspride #Lisa gets a year older #submission

[myusernamehere]

Hi Lisa. Happy Birthday my dear. I saw on an earlier birthday post that you had a wonderful day with your family and went to the cheesecake factory. Yummm.. carrot cake. I'm glad you had such a lovely birthday.

Carrot cake is the best thing ever. Carrot cake from the Cheesecake Factory? Food orgasm. Seriously! But I did have a really great day with my family. My parents are visiting from Florida, my brother, my sister-in-law, and my beautiful nephew came up from Connecticut, and my sister-in-law's mother is in town from Seattle. I've never actually gotten to meet her before, so it was really really nice. Thank you so much for the beautiful birthday wish, Tracy! I really appreciate it, love.

#lostmyselfinparadise #Lisa gets a year older

[myusernamehere]

My dear Lisa, happy birthday!!! I hope you are having an amazing day!! Sending you lots of hugs!!!

Thank you so much Jackie! It's been a really great couple of days for me. I appreciate you sending me this message, love. Hugs and kisses right back to you.

#underthedesertstars #Lisa gets a year older

[myusernamehere]

Happy birthday, sweetie! I hope it's been a good one!

Thank you, Cynthia! I know we are birthday twins. Is yours the day before or after mine? I can't remember, but happy birthday in case I missed it! It's definitely been a good one. I really appreciate the message.

#titaniasfics #Lisa gets a year older

[myusernamehere]

Thank you so much love! This graphic was perfect a couple years ago, and it's still perfect now. Of course going strong. I can't wait to see you next month again. And thank you for your beautiful and kind words as always. Plus, what's in my email. I love you! (And you had me at Driver. <3)

Wishing my dear friend and editor (myusernamehere and rainmadeofechoes) a wonderful and happy birthday today! Your two favorite men join me in saying, Happy birthday, Lisa! Love you bunches!

Lisa, you are one of the strongest and nicest people I know, and your kind-spirit as you face your life struggles inspires me more than I can say. You deserve nothing but the best.

#hutchhitched #Lisa gets a year older

[myusernamehere]

Happy birthday beautiful xxxxxx

Thank you so much Cerys! Love you girlfriend.

#peetamellarktossedmebread #Lisa gets a year older