Whereas March 21st, 2012 is also an important day (that's the day I was diagnosed), it stands for completely different things-it was the start of the battle with an illness but it also brought hope of finally knowing what was wrong. Today stands for a more accurate representation of what my life actually is and feels like-uncertainty, sadness, loneliness and above all: change. It's been a rough day emotionally and what a more fitting way to spend it then all day at the doctor's. However, my friends (as always) were a source of constant encouragement through out this particularly tough day and my family (as always) did the best to bring a smile to my face . My mommy got me my favorite Panera salad for lunch (chicken bacon avocado with blue cheese and hard boiled egg on the side. you have to try it), baked my "safe" favorite chocolate chip cookies (I have a major sweet tooth) and my family and I went out to Aspen Leaf (my favorite fro yo place) tonight for desert.
It used to be that the 21st for me was hard, as just so many things have happened on the 21st, but now it's mostly just January 21st (the date I first became terribly sick), February 21st (the date I went gluten and dairy free) and March 21st (the date I was diagnosed) that give me the most trouble. I've been working over the past two years on making the 21st of each month less of a hard day (trying to tell myself "it's just another day") and I've been somewhat successful, but I think that those three dates will always be especially tough days for me as they symbolize major change in my life.
When I think about the fact it's been two years, it's rather shocking to think it's only been that short amount of time. You may think, "two years oh that's not that long" but to me it feels like twenty years. When most everything you once knew is no longer a part of your life and you live through days that seem like endless hell, 730 days (and counting) is a long way to live in that state. I know there's an end in sight, but I just don't know when that end is. That makes it very difficult to fight and stay happy each day when you're unaware how many more days you're going to have to live in this condition.
I've had a very tough past three months, one of my toughest stretches since I first became sick. I've had eight IV's, countless tubes of blood drawn and new problems have arose. My IV that I've had in since last Wednesday is still in and is remaining in through Saturday (which isn't particularly safe, but I'm being very cautious and my parents, doctor, nurses and I are monitoring the site closely) because I am still passing out, despite receiving fluids and steroids for over two weeks now. If I'm still not doing well with the IV in now, it's fairly scary to think of what kind of shape I'll be in once it's removed. We went into my appointment thinking he was going to remove it as the catheter had already been in for over it's limit so I was overjoyed when he told me I could keep it in for a few more days (my mom said she never thought she would she her daughter so excited to keep an IV in). Because at this point, I'm just willing/wanting to get better, and this seems to be one of the very few things that works, as troublesome as it may be.
One of the problems with passing out so much is with staying in bed so much and crawling or being carried from place to place, your body starts to deteriorate and your legs begin to atrophy. I've been doing yoga each night (sitting down or laying down poses) in an effort to keep my body in some sort of shape (and to make myself feel better) but nothing is as good for my legs as actually walking. (Before this decline, I was able to walk around my neighborhood at a fairly steady pace for a half hour, to give you a reference.) I wasn't able to walk anywhere but down the hall to the bathroom and down the hall further to my parent's room until Sunday afternoon. Now, I'm able to walk from the front door to the car when needing to go to doctor's appointments, so that's an improvement. However, one of my biggest challenges is the fact that our house is a two story and my bedroom (as well as the rest of the bedroom's) are upstairs. The stairs are a constant drain of energy. (Extreme Makeover: Home Edition one story handicap accessible house where you at?) When my dad isn't home and able to carry me up and down the stairs (God bless him) I have to crawl. Now I'm only passing out around two times each time I go down/two times each time I go up (better than passing out every other step), but that's still not good and it's an annoyance. I know eventually I'll need to be able to stand and do the stairs in my house to be functional and independent, but they're currently a hindrance.
The latest set of problems I've been having the past three months are stomach issues and indigestion. (Those were the two out of the 20 POTS symptoms I didn't have when I first started getting sick two years ago so go ahead and congratulate me, your girl now has all 20!!!) Currently, I've been experiencing almost daily nausea (yay for nights where I sleep in the bathroom), vomiting, days where I can only keep down liquids (God bless Starbucks smoothies and Jamba Juice), and stomach pain where I feel like dozens of knives are being stabbed into my stomach and twisting and turning leaving me in excruciating pain, indigestion and restroom issues, among other things. We're going to a POTS GI doctor (My best friend Hailey goes to her and recommended I go to her) to figure out what's wrong, but we were unable to get an appointment until late April. We're trying to see if Patel can have some influence in getting us in sooner, but she's a busy woman so I don't think we'll be able to, honestly. In the mean time, we're doing a stomach work up so by the time we get to her, hopefully a lot of the tests she wants to run will have already been done and we won't have to wait for tests to be run/get results, we can go straight to treatment. However, April seems a long ways away to live with constant stomach issues daily.
The past three months have been extremely difficult and in all honesty, physically/mentally/emotionally I don' t think I can do another three months like this. I've gotten to the point where I'm too tired to even cry, how sad is that. Nothing makes me happy anymore, nothing makes me smile anymore, nothing makes me laugh anymore and nothing even sounds like fun. I don't feel pretty, worth it or smart. (I'm not suicidal nor have I ever thought about harming myself, don't worry about that.) This is the most depressed I've been in a while, and I know a large reason why is because I've been feeling absolutely awful and spending so much time in my house, simply because I don't have the energy to get up and go anywhere. Your mental health and physical health and emotional health are very closely related, and it's very hard to have all three poor and fight all three bad at the same time. I'm having a difficult time focusing on things such as studying for my SAT (which I take for the first official time Sunday, please say prayers), history or even making plans for prom because at this point in my life I feel as if there's much more important things to think about and focus on-how does my IV site look? Did I take my afternoon meds? When will my next fluid bag need to be changed? Very rarely do I feel like a teenager and I haven't felt even relatively close to one in a very long time. My teenage years are flying by me as I sit here planning my life around my next doctor's appointment or my next tutoring session. It's no way to live your life, especially what are supposedly supposed to be some of the "best years of your life."
Options are getting slim, risky, expensive and dangerous; it's a tough spot to be in. I feel as if we have almost stumped Dr. Patel, which is saying something because he is without a doubt one of the smartest people, if not the smartest person I have ever met. Please pray and hope that he is able to come up with something soon, because I really don't know if I can do another three months of this, like I mentioned above. It's very hard also on my family and friends to see me like this as well.
I'm sorry for such a long and feeling-filled post, but emotionally I just haven't been able to blog lately. I can't particularly describe it, but between the mix of low self esteem, brain fog and depression I couldn't get myself to type something. It's also very difficult to type/write (or do anything for that matter) when you have an IV in your dominant elbow, but I thought I was getting it out today (which I didn't, remember) and I had said I would blog tonight and I knew it would make me feel better, so I powered through it and followed through. Thank you all for keeping up with me and my journey and thank you everyone who encouraged me not only today, but who encourages me every day. It's been an emotional day and I really am very happy it's over. I'm ready to snuggle with my puppy and watch Netflix and go to bed, I'm worn. It really is hard to believe that it's only been two years. What a journey it's been and what a adventurous, difficult journey I'm embarking on and still have ahead of me.
"Trust in the Lord with all your heart and lean not on your own understanding;" -Proverbs 3:5
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