Haven't been here in a while.
I hope you're all still doing okay.
I've been thinking of how to start this post over the past hour, and I realized that every time I went over it in my head, it started out as an apology. It was an apology for being absent, an apology for how whiny I think my pain posts are, for how I've neglected my journal. And while it sucks that I've not been on and I've surely missed out on a lot of my friends' posts, it struck me that I was apologizing for my fault of being a bad friend, and not faulting my pain.
This happens a lot. I end up neglecting things because of my pain, and then I make up excuses and put myself down in the process when I really didn't have any control over the situation. I can't tell how I'm going to feel in a week, let alone a day, so when I have to cancel things because of the pain, I shouldn't feel guilty. Except I do.
I know I'm not the only one who suffers from this. Lately, I feel like I'm just plain worthless. What's the point of my existence? I don't do anything. I'm horribly embarrassed of myself. I don't work. I can hardly move some days. I can't get the assistance I sorely need, I can't see the doctors I need to see and get the treatments I need to get. At least not all of them. I'm doing my best to see who I can, when I have the extra money. I babysit a kid here and there when I can (the sweet, easy kids who aren't hard on me) for a few extra dollars to go to my Rheumatologist or my Gynecologist, possibly pick up a bottle of pain medicine if I can afford it.
This college educated, 28 year old who had everything going for her can't take care of herself.
It's embarrassing, even though it shouldn't be. I didn't choose to get these diseases, and I certainly tried to work, even when I could hardly move. It's just, with so many "professionals" telling me this is all they can do, I think, "Oh, it must be me. I must be making it worse than it is."
Well, I've come to the conclusion that, No, I'm not. Every single time I try to go about a "normal" day, I fail. I simply can't do it.
Some of my friends have helped me in the past here and there, and every time I post one of these entries, I feel like I'm telling them, "Well, I appreciate what you did for me, but it just wasn't enough" and that certainly is NOT the kind of message I want to send. You know who you are, and you know how much you mean to me, and I want to make it perfectly clear that I love you and
appreciate you more than I could ever express.
I just can't seem to catch a break these days.
But I'm still trying. God willing, I will always at least try.
So, I am still trying. I promise.
I know my last few posts have been pretty down. It's a roller coaster of emotions and I appreciate how supportive you've all been of me.
Last night was strange for me. It was a mix of good and bad. Bad as in I threw up so randomly, in the middle of conversations with Kalli, but I also had some really good conversations with her and my friends about everything that I kind of feel closer to everyone right now. So yeah, a mix of good and bad.
Most days I can't keep anything down. I'm going to speak to my doctor about it when she's back from vacation because I know it's really unhealthy to continuously throw up for any reason. I'm not sure if it's the pain or the medicine or a mix of both. I usually throw up more when I've actually gone out and exerted myself. I feel okay at the time, but when I get home and the pain starts to sink in, I can't keep my food down. I've been living off crackers and ginger ale mostly, trying to get some fruits in there if I can, and protein. I'm going to have to think about vitamins, too, and take them in advance of any activity so I don't just throw them back up. It's all a balancing act.
If you have a few moments, tell me how you're doing? I'm so focused on myself lately that I've been neglecting you all and this isn't something I want to do.
As always, I love you very much, my dear friends.
What I want most is to feel like I'm not just getting through the day. When I wake up, all I think about is what I have to do to make it through the day, just to get back to lying down, rinse, wash, repeat. I don't get to live. I don't get to do things I love to do. All I think of is pain, how to try and make it through the pain, the nausea, the collections agencies calling, all while trying to stay strong and tell myself and everyone that I can do this.
It's really hard and I don't know if I can do this.
I spend most of my days throwing up and nauseous almost 24/7. I believe it's a mix of the pain and the medicine I'm taking. It's incredibly frustrating when I go out to the store to pick up a few things and come home in pain and start throwing up a few minutes later. My body is ridiculous.
The medicine I'm taking doesn't seem to help as it had in the beginning, but I knew in the back of my mind that this would eventually happen. It never fails that I become used to medicine very quickly. My Gynecologist in high school had me try somewhere around 8-10 different birth control medicines because they would work for a few months and then stop. Same with antibiotics, and pain medicine.
Speaking of pain medicine, my RA doc called in a pain killer for me, since I've not been able to move much, except it costs $73. It's the cheapest, apparently. And generic. So I'm going to just do what I'm doing and try not to throw up so much. Sort of at a dead end, as it is.
Everything hurts. I never thought I'd see myself in this situation, and yet here I am.
I'm not breaking my promise to be more open and honest. Here is what has happened since I last posted:
I keep worrying that I'm neglecting people so much that I push myself. I don't want to completely cut myself off from the world and never do anything, but I've been in ridiculous amounts of pain over the past few weeks. I'm getting worse and worse as they days go, in more and more pain, having to take pain killers every day. My hands shake, my body feels stiff as a board. This is why I haven't been online or making much of an effort to text/call/chat. I apologize for that, but I also know you all understand.
Everything hurts terribly. It makes me sick to my stomach and makes me throw up and sweat and shake. I'm still getting the lupron injections, and yet I've gotten my period this month. My body is so resistant to medicine that I have to keep changing what I take to get results. This is another reason why things get so expensive and why I can't afford so many medicines that I need.
Despite that, I keep getting really sweet texts from my friends telling me they love me. I got a package from Pat and her boyfriend, Brandon, with little Iron Man and Captain America dolls. That made my whole morning.
I had a long talk with my father about what's going on with me. His RA is so advanced that he's had surgeries, and he's worried that mine is going down the road of his, considering my left hand is a bit warped like his (the doc said even without the blood test she knew I had RA, when she felt the knuckles in my hands). My thumb, as I've mentioned before, is deformed, and now my little pointer finger is going the same route. I can no longer straighten it.
I've tried home remedies and natural remedies that friends have urged me to try. So far, nada. I'll keep trying though, so any suggestions you have, if you know of any, do let me know.
Thank you all for your continued support. You mean the world to me, and even though I'm not around as often as I used to be, I still love you very much and will always be here for you.
I want to reply to my comments, and I really do plan on it, and I apologize for not being more active in your lives, LJ. I'm still working on health stuff, and I promise to still keep you updated.
A couple weeks ago, my older sister had surgery and they found endometriosis in her. She was hurting really badly, and she's had issues on and off for years now, but this just confirmed what we all figured. Between mom's menstrual troubles all her life, and my sister's confirmed endometriosis, my gynecologist said that it's very very likely that I also have it, and that we're on the right track. As it is, I had my third lupron injection yesterday. It's giving me annoying side affects, more annoying this time than the last two, but I'm working through it. I have a lot of support through you guys.
Still haven't found a pharmacy or program to get my medicine for the RA, so I'm still on and off the steroids. The pain is getting worse, and I just really hope that someone is willing to work with me. I can't afford the medicine otherwise, because it's way too expensive and I just don't have it. All of these medical visits and my other bills just got in the way, way before I thought it would have. So taking it one step at a time.
Also, at the end of the lupron injections, if my bladder doesn't ease up, my gynecologist said he will refer me to a urologist. It'll be the same one I went to a couple of years ago. He's really thorough and gives discounts, and he was the one who told me I needed to go to a gynecologist to get checked for endometriosis.
Something I'm doing for the next 10 months is, I'm staying with a 15 year old whose father is being deployed. He had someone set to stay with her, but they backed out the week before his training, so he was asking around if there was anyone to stay with her. He's friends with a very dear friend of mine, and he's been calling me a blessing for the past month. I couldn't leave this guy hanging, you know? His daughter is wonderful, too. She's pretty self reliant as it is, very mature but still very much a 15 year old. She's super creative, loves to sing and write music and play her guitar, a really wonderful artist and just an all around great kid. I've spent the last two weeks living with her to see if we got along, and it'll be good. It'll just be good. She's a sweetie and I like her, and I like that I can help a soldier out when he needs it.
Anyway, I'm going to stop the post here because I'm all loopy from pain medicine and need to lay my head down for a while. I really appreciate all you do for me, my friends, and for staying with me and supporting me through all of this. You don't know how much you mean to me. <3