Monday, December 23, 2013
Brain zap
Just had my first brain zap world flip dizzy thing in nearly a year. Sitting down. Working on the computer. Nothing out of place. Frak.
Thursday, November 21, 2013
Who will save your soul...
It goes well. *knocks on self* Don't get to say that often and the few times I've let that slip out, really bad things have followed to balance out the comment. But for now, hopefully it's safe to be honest and say it goes well.
Been mostly in remission 16 months now. The mostly is because any time I get back into my non-paleo-like eating habits, the inflammation pain returns very slowly and then gets angry. I normally wait to head it off more towards the angry point and try to ignore it until then. My stubborn streak hasn't changed. My finances are getting better, though, so that helps with the paleo cost. Biggest issue is I'm lazy when it comes to cooking; something I personally need to make a much more drastic effort to fix.
But when I stick with it, things are consistently shiny. Pain is near non-existent and only when it gets really cold or drastic weather changes do I feel anything at all. Considering it was in the 80's today and 50's tomorrow, have a feeling tonight and tomorrow are going to suck bum. It goes with the territory, though. And it's minimal and I'm happy to live with it as long as the constant daily pain stays away.
Strongly considering learning to fight again, but this time with live steel. The stage combat stuff has been put on hold due to lack of a teacher with time. Have joined up with a Viking reenactment group who are full of incredible win and awesome. Currently I'm considered a member of the Hearth, but at some point it would be nice to get back to being a Warrior. Just got to make sure I don't jack up my elbow again.
Yup, it goes well. For the moment I'm in a happy place in a lot of aspects in my life and I have to just keep praying that continues to last as long as I can hold on to it and be as prepared as one can to let it go if that's where the path leads. Still one day at a time and trying to make every day as shiny as possible.
Hope this finds all of you out in the interwebs doing well.
*hugs*
Been mostly in remission 16 months now. The mostly is because any time I get back into my non-paleo-like eating habits, the inflammation pain returns very slowly and then gets angry. I normally wait to head it off more towards the angry point and try to ignore it until then. My stubborn streak hasn't changed. My finances are getting better, though, so that helps with the paleo cost. Biggest issue is I'm lazy when it comes to cooking; something I personally need to make a much more drastic effort to fix.
But when I stick with it, things are consistently shiny. Pain is near non-existent and only when it gets really cold or drastic weather changes do I feel anything at all. Considering it was in the 80's today and 50's tomorrow, have a feeling tonight and tomorrow are going to suck bum. It goes with the territory, though. And it's minimal and I'm happy to live with it as long as the constant daily pain stays away.
Strongly considering learning to fight again, but this time with live steel. The stage combat stuff has been put on hold due to lack of a teacher with time. Have joined up with a Viking reenactment group who are full of incredible win and awesome. Currently I'm considered a member of the Hearth, but at some point it would be nice to get back to being a Warrior. Just got to make sure I don't jack up my elbow again.
Yup, it goes well. For the moment I'm in a happy place in a lot of aspects in my life and I have to just keep praying that continues to last as long as I can hold on to it and be as prepared as one can to let it go if that's where the path leads. Still one day at a time and trying to make every day as shiny as possible.
Hope this finds all of you out in the interwebs doing well.
*hugs*
Friday, July 5, 2013
A long December and there's reason to believe maybe this year will be better than the last....
Well, may not be December anymore, but as fast as this year it going we'll be upon it again in no time. Some good news is my white blood cell count has stayed in normal range for a year now. A whole year with my auto-immune issues/inflammation under control. I'll admit, I'm a big emotional about it. After the UCTD kicked in in Feb 2009, I honestly always had this underlying feeling of despair that I would always be suffering. Always on tons of medications to treat it. Never free.
I talk about faith so much, guess I should brush up on it. I'm thankful, grateful and so incredibly blessed to be at this point. I'm not cured. It's still there. "Remission" is the term my Rheumatologist gives. *shrugs* At the moment I don't hurt and I'm down to one medication to treat it and no more infusions of chemo drugs; I call this a win, even if it's temporary.
Because of the remission, I've gotten to feel like I have control of my life again. Last year I took stage combat lessons which I loved and hope I can afford to get back into again. I spent the first three months of this year working out at Sherwood Forest Faire doing pretty much hard manual labor for no pay; something I didn't think I would ever be able to physically survive again... but I did. After my right elbow surgery in December to take out the deteriorated muscle and tissues (and a bone spur they found) from my 10 years of sword fighting with Amtgard, it's as close to new as I could hope it to be. I rocked physical therapy and as long as I keep using it regularly (as opposed to constantly assuming the typing at a keyboard position), it gives me no pain.
Lots of things have changed in the last year; some good and some bad. Most I can't discuss here. I think I'm on the right path now and if it turns out I'm not, I'm open to altering my steps to see where they lead me. I'm reinforcing in myself to do more of the things that make me happy and feel right and where I feel I belong. As I try to reinforce in J, it's not selfish to put yourself first because once you're taking care of "you", there's LOTS leftover to look after others and help them find their happy. Good things are here as well as coming. I still give them no choice.
I miss C. Really hope the universe is treating her well. Still have to find a way to get her dress back to her too. Maybe through her Aunt C.
Through new friends I've gotten to meet a whole lot of new awesome folks: more people out at Sherwood Forest Faire and now the Jomsborg Viking crew through JJ and Z who I met at Sherwood. All fantastic people I and I in both places I can find a way to contribute as they're all amazing folk. Amtgard and the Order of the White Rose used to be my family. Would like to find another reenactment group again to be a part of that has the ideals of sticking together, looking out for one another, and having fun. Would just love to be in a group I can help out again. Organizing and running events was awesome. From peeling potatoes for feast to gate duty to overall making it happen... every part was worth every moment when you hear what an amazing time everyone had. I just love bringing people together *smiles*
My life is good. I'm happy. Things just keep getting better. The parts that aren't shiny will work themselves out one way or another and I'll be grateful for the time spent no matter how the final page reads. I very much look forward to continue writing my story.
There's never an end, only new beginnings.
I talk about faith so much, guess I should brush up on it. I'm thankful, grateful and so incredibly blessed to be at this point. I'm not cured. It's still there. "Remission" is the term my Rheumatologist gives. *shrugs* At the moment I don't hurt and I'm down to one medication to treat it and no more infusions of chemo drugs; I call this a win, even if it's temporary.
Because of the remission, I've gotten to feel like I have control of my life again. Last year I took stage combat lessons which I loved and hope I can afford to get back into again. I spent the first three months of this year working out at Sherwood Forest Faire doing pretty much hard manual labor for no pay; something I didn't think I would ever be able to physically survive again... but I did. After my right elbow surgery in December to take out the deteriorated muscle and tissues (and a bone spur they found) from my 10 years of sword fighting with Amtgard, it's as close to new as I could hope it to be. I rocked physical therapy and as long as I keep using it regularly (as opposed to constantly assuming the typing at a keyboard position), it gives me no pain.
Lots of things have changed in the last year; some good and some bad. Most I can't discuss here. I think I'm on the right path now and if it turns out I'm not, I'm open to altering my steps to see where they lead me. I'm reinforcing in myself to do more of the things that make me happy and feel right and where I feel I belong. As I try to reinforce in J, it's not selfish to put yourself first because once you're taking care of "you", there's LOTS leftover to look after others and help them find their happy. Good things are here as well as coming. I still give them no choice.
I miss C. Really hope the universe is treating her well. Still have to find a way to get her dress back to her too. Maybe through her Aunt C.
Through new friends I've gotten to meet a whole lot of new awesome folks: more people out at Sherwood Forest Faire and now the Jomsborg Viking crew through JJ and Z who I met at Sherwood. All fantastic people I and I in both places I can find a way to contribute as they're all amazing folk. Amtgard and the Order of the White Rose used to be my family. Would like to find another reenactment group again to be a part of that has the ideals of sticking together, looking out for one another, and having fun. Would just love to be in a group I can help out again. Organizing and running events was awesome. From peeling potatoes for feast to gate duty to overall making it happen... every part was worth every moment when you hear what an amazing time everyone had. I just love bringing people together *smiles*
My life is good. I'm happy. Things just keep getting better. The parts that aren't shiny will work themselves out one way or another and I'll be grateful for the time spent no matter how the final page reads. I very much look forward to continue writing my story.
There's never an end, only new beginnings.
Sunday, July 29, 2012
I Dare You To Move...
Just when you think you know how things are going to be in the world, the road starts getting steep and curvy. Reminds me of Clan in NM when I was in HS. Good times, but dangerous roads. Just glad we were there during the summer and not having to drive those at night.
There's nothing I can't overcome, but some things you want certain people along for the ride. One of those recently jumped out of the card and slammed the door shut. It was unexpected. I have an emptiness I'll never be able to fill where that person used to be. I was lead to believe things weren't shiny but then told they were. Feelings and thoughts were exchanged on both sides that weren't appreciate and here we are, no longer speaking. I'll admit; I still cry about it now and then. Wound is still fresh. Always sucks losing one of your oldest friends. It's like the loss when someone dies, but worse because you know they're still around, just that they want nothing to do with you. The friendship was never a lie. The worry and wanting to bring happiness was never a lie. I suppose speaking here it means nothing now, but that doesn't make it any less important to say. You're missed, C. And still loved. And still prayed for. I hope this new path you've chosen brings you that happiness you so incredibly deserve and you find someone to send you those purple roses for your birthday and valentines day that you won't get from those at home with you. You always really seemed to like them and they made you smile.
Health stuff was great until a few weeks ago when the friendship world exploded. One part's been a little wonky off/on since March, but the pain didn't kick in until the super stress did. The wonky stuff a Neurologist Dr N says is a weird form of seizures. I mind my own business, can be any time of day doing everything or nothing in any position of vertical or rest and I'll get what feels like a lightening zap (has moved around a little) to my brain for a split second then there's 45 seconds of the world spinning clockwise REALLY fast (can feel it even if eyes are closed), stomach feels like it wants to be on the outside but so far I've held it in, then over that 45 seconds the spinning slows down until it's back to even keel. Downside balance is frakked and I walk around like a drunk anywhere from 5-24 hours; depends on the episode. I think we're up to 5 or 6 now. They put me on this medication about 4 weeks ago now maybe called Keppra. Taking it twice a day and since taking it have had two episodes; maybe 3. Most recent was early last week. I don't know how long it takes for this stuff to fully kick in. Personal opinion of it right now is it's not doing a blasted thing for me. They did an MRI the first time it hit me to the point where my balance was frakked and I went to the ER and found nothing. After a couple more they did an electrodes thing over 20 minutes and shined strobe lights in my fact and surprise surprised, nothing. Brain scan isn't gonna show a damn thing unless it's happening so it was a huge waste of time. Yeah, I'm a bit cranky about it. It's because I'm scared. I will absolutely admit that. Things concerning pain and inflammation; used to it and know how to deal with it. Things involving my head??? Scared me absolutely to tears some nights. I hate that the doc isn't sure about what it is so is just taking his best guess and he wants me taking this stuff 6 months and then stop and see if they keep happening. He assures me it's not a side effect of any medication I'm currently taking or anything Dr P's put me on in the past since my UCTD kicked in. Considering how many of those medication can have possible crazy side effects the answer seems easy to me that it's one of those or a combination in the cocktail, but he says not. *sighs* Just hate not knowing when it's going to hit me again. It makes me afraid to drive and getting out and visiting folks and going on road trips is ridiculously important to me. I don't want that taken away. So here's hoping this med "fixes" this and during the next 5 months it goes away just as quickly as it came on.
Dr P had me taking Cellcept for awhile which I've stopped; my own decision before I let him know about it at our last appt a couple weeks ago. Since my last infusion beginning of April, I've actually felt really great up until a few weeks ago. Normally after about 8 or 9 weeks after the Rituxan I start to hurt again, but not this time. It seemed to have finally worked the way I always wanted it to and stopped the Cellcept just seemed right. *shrugs* I just went with what my body was telling me in a weird subliminal way and Dr P said he was cool with it; just don't stop taking anything else *smiles* Well, except the prednisone. I've been on 1mg for what seems forever now. The last two times I've come completely off of it though the pericarditis has kicked in and that always sucks. So we're back to "the fear". I want off this stuff completely, but I also don't want to feel like I'm having a heart attack in 3-4 weeks after I stop taking it. Time off is short on the work front, especially with two days of infusions left this year; maybe 3 if I do another right before Christmas then another on my birthday. Probably just going to put off the next first round until Jan and have it after New Years/birthday party time. Nice to have something to look forward to. Of course comes the balancing factor of all the feeling great since last infusion. If you've kept up with this blog you'll remember I have cardinal rules. One of the few is "Thou shalt not stress". Well, losing one of my oldest friends in less than 72 hours completely shook that feeling great foundation. Hands and feet hurt again. I've refused to take more prednisone to help with it. More relying on excedrin (sp?) migraine to help with the headaches I've been having. Can't keep the stress out of my neck and shoulders. Had a GREAT massage recently to try and help, but it's going to take more than one and for me to let a few more things go stress wise before it'll really help the way I need it to. Points for effort, though :-) Next infusion is on the 6th then the second two weeks after that. Dr P and I had talked about switching to Benlista (sp?), but since the Rituxan was working so well seemed silly to change. Now I'm not so sure, but I know it was the stress that sent me back into the pain bucket. Maybe after this next round I'll find my happy-ish mental space again away from hopefully a lot of unhappy mental stuffs and get back to physically feeling like a normal person again. Here's hoping *take a drink of ice water*
B has been doing great things with the TXSG. He's really enjoying it. I was sad it caused us to miss our 1 year dating anniversary but this is a military based organization; not like he can just decide not to go to Annual Training and I wouldn't ask him not to and even if I did, he was still going to go. Hoover thing is that AT's likely going to fall on our anniversary every year forever. Still not sure why they don't have AT in like Jan and then BOT in March/April when it's still cooler and this will get everyone trained up BEFORE the fire/hurricane season kicks in instead of in the middle/end of it when they guys can't officially do squat until they've passed all the training. I'm a civvie so I have no say, but some of their choices don't make a lot of sense. I'm sure it does to them, though, so as a peon I just have to trust they're going to do what's best for those that join. Here's hoping again *takes another drink* It's always good to have more folks in the world organized enough to help the other folks that need it.
Since mid-March I'd been trying to find someone/some place to teach me stage combat, specifically sword fighting. Through some networking I finally got the guts up to contact J who met with me and put me in touch with C. We've sadly only been able to get together once, but that once was still awesome. Praying he heals fast not because I want to be able to learn more from him (that's just an added bonus), but I know what it's like to be in bad pain and I wouldn't wish it on my worst enemy. Hopefully he finds a way/person/place to get healed up soon. Auditioning for SWFF in Aug just isn't going to happen; I don't know anything yet. But I'm at least going to contact B and see if there's anything more I can do at the Faire onsite proper beyond what I'm doing digitally. Love the people and the atmosphere and the incredibly awesome happy vibes from that place. It really does have an air of magic to it and happiness is healing.
Been exercising since April-ish. Did GREAT at first. Lulled. Did better. Lulled a LOT. Went back to the gym today. Going by myself I'm having a hard time staying motivated. I know I don't want to look like I do now. I know I feel better when I exercise regularly. I don't lose a damn bit of weight, but I've at least lost some inches. That's just about stopped though returning back to a pizza and grease diet, though at least I'm still keeping sodas to a minimum and drinking a heck of a lot more water than I used to. I have such a long way to go. Trucking on is really my theme, it's prevailing that still seems to be just out of reach for a lot of things. Trying hard to keep the faith. I always have it in others, but a lot of days these past few weeks I've had a hard time keeping it in myself. *smiles a little* B still has faith in me. I will continue to say just how bless I am to have him. And he's taken such great strides to better himself but getting his exercise on double time and really working hard to be the best he can be for his unit in the TXSG. Super incredibly proud of him.
Told him the other night I wanted to spend the rest of my life with him. He didn't run screaming. I'll take that as a good sign. Told him also that were things to ever work out in our favor in a positive way I'd at least like to consider extending the fam beyond cats and some day a dog or to. He seemed ok with that concept to. Shocked is not a strong enough word to describe how I felt with his reaction as it was totally not what I was expecting, but just... wow. I'm really happy. I enjoy our time together and miss him when we're apart. I love sharing everything I can with him. He looks after me when I don't do a good enough job and keeps me smiling and telling me I'm beautiful. A man who takes care of me. I just never really expected that having to normally be on the giving end most of the time in a lot of other relationships. We have a great balance. I try hard not to frak that up. I don't always do a good job, but he takes it all in stride and sticks with me through the good and the bad days. Blessed with some extra looking out really seems to be what's going on and dearest Lord, please let it keep going on. I don't want to think about a life without him.
Ooo... Going to meet with an acupuncturist this upcoming Fri for a free consultation. Supposed to meet for an hour with him to give him the 411 on my medical life and see if he thinks he art might be able to help. I hate the thought of someone poking needles in me and the concept that it could be done in such a way as to help me seems really bizarre, but a LOT of the people at the Rituxan infusions say that doing acupuncture has greatly helped with their pain issues and some even say it helped with their allergies. Crazy stuff, eh? Well, I guess not too crazy since it's been around a looooong time. What I want to try to get out of this is getting off the drug cocktail. I want to stop the Rituxan infusions, stop the pills for keeping the inflammation under control, and get back to feeling good enough to play bass in rockband again without my hands hurting or exercise enough to get something out of it instead of constantly worrying about how much pain I'll be in after because it'll set off the inflammation. It's a stupid way to exist and that's about it is; existing. I want to do so much more than that. I have a lot of big plans and dreams I would like to start on sooner than later and maybe over time this will help me reach those without all the medication assistance. Points for effort anyways, right? *grins*
Three to four months of catching up makes for a war and peace kind of post. Sorry about that. As always, lots to get out and I don't let it out here often enough away from the world of fb and other social networking. I try really hard to keep those places light and happy as there's enough crummy stuff in the world as is and folks could always use some more cheering up. I even hear tell a dream I had might have inspired someone to get back into movie making again *smiles* Just the thought of helping inspire someone is awesome. I have no talents for anything in an artistic fashion, but I try very hard to make folks smile and inspire when/where I can and encourage others to find their talents and learn to hone them and use them for great things. There's much awesome potential in the world and the more it gets unleashed the better things will get. I still have faith in that.
Think B said it was shower time now that he's used up all the hot water for a bath :-P Things have hoovered recently, but I have survived every day since and as they always have, they'll get better before they get worse again and then wash, rinse repeat. The saying is true, "What doesn't kill us makes us stronger." Just like R has been saying, I'm gonna be She-Hulk before all's said and done at this rate and for coming out better in the end after all I've been through and will go through and will help others through, I'm OK with that as long as I don't have to be green *laughs*.
Goodnight world. Hope you have sweet dreams and life treat you most excellent.
*hugs*
There's nothing I can't overcome, but some things you want certain people along for the ride. One of those recently jumped out of the card and slammed the door shut. It was unexpected. I have an emptiness I'll never be able to fill where that person used to be. I was lead to believe things weren't shiny but then told they were. Feelings and thoughts were exchanged on both sides that weren't appreciate and here we are, no longer speaking. I'll admit; I still cry about it now and then. Wound is still fresh. Always sucks losing one of your oldest friends. It's like the loss when someone dies, but worse because you know they're still around, just that they want nothing to do with you. The friendship was never a lie. The worry and wanting to bring happiness was never a lie. I suppose speaking here it means nothing now, but that doesn't make it any less important to say. You're missed, C. And still loved. And still prayed for. I hope this new path you've chosen brings you that happiness you so incredibly deserve and you find someone to send you those purple roses for your birthday and valentines day that you won't get from those at home with you. You always really seemed to like them and they made you smile.
Health stuff was great until a few weeks ago when the friendship world exploded. One part's been a little wonky off/on since March, but the pain didn't kick in until the super stress did. The wonky stuff a Neurologist Dr N says is a weird form of seizures. I mind my own business, can be any time of day doing everything or nothing in any position of vertical or rest and I'll get what feels like a lightening zap (has moved around a little) to my brain for a split second then there's 45 seconds of the world spinning clockwise REALLY fast (can feel it even if eyes are closed), stomach feels like it wants to be on the outside but so far I've held it in, then over that 45 seconds the spinning slows down until it's back to even keel. Downside balance is frakked and I walk around like a drunk anywhere from 5-24 hours; depends on the episode. I think we're up to 5 or 6 now. They put me on this medication about 4 weeks ago now maybe called Keppra. Taking it twice a day and since taking it have had two episodes; maybe 3. Most recent was early last week. I don't know how long it takes for this stuff to fully kick in. Personal opinion of it right now is it's not doing a blasted thing for me. They did an MRI the first time it hit me to the point where my balance was frakked and I went to the ER and found nothing. After a couple more they did an electrodes thing over 20 minutes and shined strobe lights in my fact and surprise surprised, nothing. Brain scan isn't gonna show a damn thing unless it's happening so it was a huge waste of time. Yeah, I'm a bit cranky about it. It's because I'm scared. I will absolutely admit that. Things concerning pain and inflammation; used to it and know how to deal with it. Things involving my head??? Scared me absolutely to tears some nights. I hate that the doc isn't sure about what it is so is just taking his best guess and he wants me taking this stuff 6 months and then stop and see if they keep happening. He assures me it's not a side effect of any medication I'm currently taking or anything Dr P's put me on in the past since my UCTD kicked in. Considering how many of those medication can have possible crazy side effects the answer seems easy to me that it's one of those or a combination in the cocktail, but he says not. *sighs* Just hate not knowing when it's going to hit me again. It makes me afraid to drive and getting out and visiting folks and going on road trips is ridiculously important to me. I don't want that taken away. So here's hoping this med "fixes" this and during the next 5 months it goes away just as quickly as it came on.
Dr P had me taking Cellcept for awhile which I've stopped; my own decision before I let him know about it at our last appt a couple weeks ago. Since my last infusion beginning of April, I've actually felt really great up until a few weeks ago. Normally after about 8 or 9 weeks after the Rituxan I start to hurt again, but not this time. It seemed to have finally worked the way I always wanted it to and stopped the Cellcept just seemed right. *shrugs* I just went with what my body was telling me in a weird subliminal way and Dr P said he was cool with it; just don't stop taking anything else *smiles* Well, except the prednisone. I've been on 1mg for what seems forever now. The last two times I've come completely off of it though the pericarditis has kicked in and that always sucks. So we're back to "the fear". I want off this stuff completely, but I also don't want to feel like I'm having a heart attack in 3-4 weeks after I stop taking it. Time off is short on the work front, especially with two days of infusions left this year; maybe 3 if I do another right before Christmas then another on my birthday. Probably just going to put off the next first round until Jan and have it after New Years/birthday party time. Nice to have something to look forward to. Of course comes the balancing factor of all the feeling great since last infusion. If you've kept up with this blog you'll remember I have cardinal rules. One of the few is "Thou shalt not stress". Well, losing one of my oldest friends in less than 72 hours completely shook that feeling great foundation. Hands and feet hurt again. I've refused to take more prednisone to help with it. More relying on excedrin (sp?) migraine to help with the headaches I've been having. Can't keep the stress out of my neck and shoulders. Had a GREAT massage recently to try and help, but it's going to take more than one and for me to let a few more things go stress wise before it'll really help the way I need it to. Points for effort, though :-) Next infusion is on the 6th then the second two weeks after that. Dr P and I had talked about switching to Benlista (sp?), but since the Rituxan was working so well seemed silly to change. Now I'm not so sure, but I know it was the stress that sent me back into the pain bucket. Maybe after this next round I'll find my happy-ish mental space again away from hopefully a lot of unhappy mental stuffs and get back to physically feeling like a normal person again. Here's hoping *take a drink of ice water*
B has been doing great things with the TXSG. He's really enjoying it. I was sad it caused us to miss our 1 year dating anniversary but this is a military based organization; not like he can just decide not to go to Annual Training and I wouldn't ask him not to and even if I did, he was still going to go. Hoover thing is that AT's likely going to fall on our anniversary every year forever. Still not sure why they don't have AT in like Jan and then BOT in March/April when it's still cooler and this will get everyone trained up BEFORE the fire/hurricane season kicks in instead of in the middle/end of it when they guys can't officially do squat until they've passed all the training. I'm a civvie so I have no say, but some of their choices don't make a lot of sense. I'm sure it does to them, though, so as a peon I just have to trust they're going to do what's best for those that join. Here's hoping again *takes another drink* It's always good to have more folks in the world organized enough to help the other folks that need it.
Since mid-March I'd been trying to find someone/some place to teach me stage combat, specifically sword fighting. Through some networking I finally got the guts up to contact J who met with me and put me in touch with C. We've sadly only been able to get together once, but that once was still awesome. Praying he heals fast not because I want to be able to learn more from him (that's just an added bonus), but I know what it's like to be in bad pain and I wouldn't wish it on my worst enemy. Hopefully he finds a way/person/place to get healed up soon. Auditioning for SWFF in Aug just isn't going to happen; I don't know anything yet. But I'm at least going to contact B and see if there's anything more I can do at the Faire onsite proper beyond what I'm doing digitally. Love the people and the atmosphere and the incredibly awesome happy vibes from that place. It really does have an air of magic to it and happiness is healing.
Been exercising since April-ish. Did GREAT at first. Lulled. Did better. Lulled a LOT. Went back to the gym today. Going by myself I'm having a hard time staying motivated. I know I don't want to look like I do now. I know I feel better when I exercise regularly. I don't lose a damn bit of weight, but I've at least lost some inches. That's just about stopped though returning back to a pizza and grease diet, though at least I'm still keeping sodas to a minimum and drinking a heck of a lot more water than I used to. I have such a long way to go. Trucking on is really my theme, it's prevailing that still seems to be just out of reach for a lot of things. Trying hard to keep the faith. I always have it in others, but a lot of days these past few weeks I've had a hard time keeping it in myself. *smiles a little* B still has faith in me. I will continue to say just how bless I am to have him. And he's taken such great strides to better himself but getting his exercise on double time and really working hard to be the best he can be for his unit in the TXSG. Super incredibly proud of him.
Told him the other night I wanted to spend the rest of my life with him. He didn't run screaming. I'll take that as a good sign. Told him also that were things to ever work out in our favor in a positive way I'd at least like to consider extending the fam beyond cats and some day a dog or to. He seemed ok with that concept to. Shocked is not a strong enough word to describe how I felt with his reaction as it was totally not what I was expecting, but just... wow. I'm really happy. I enjoy our time together and miss him when we're apart. I love sharing everything I can with him. He looks after me when I don't do a good enough job and keeps me smiling and telling me I'm beautiful. A man who takes care of me. I just never really expected that having to normally be on the giving end most of the time in a lot of other relationships. We have a great balance. I try hard not to frak that up. I don't always do a good job, but he takes it all in stride and sticks with me through the good and the bad days. Blessed with some extra looking out really seems to be what's going on and dearest Lord, please let it keep going on. I don't want to think about a life without him.
Ooo... Going to meet with an acupuncturist this upcoming Fri for a free consultation. Supposed to meet for an hour with him to give him the 411 on my medical life and see if he thinks he art might be able to help. I hate the thought of someone poking needles in me and the concept that it could be done in such a way as to help me seems really bizarre, but a LOT of the people at the Rituxan infusions say that doing acupuncture has greatly helped with their pain issues and some even say it helped with their allergies. Crazy stuff, eh? Well, I guess not too crazy since it's been around a looooong time. What I want to try to get out of this is getting off the drug cocktail. I want to stop the Rituxan infusions, stop the pills for keeping the inflammation under control, and get back to feeling good enough to play bass in rockband again without my hands hurting or exercise enough to get something out of it instead of constantly worrying about how much pain I'll be in after because it'll set off the inflammation. It's a stupid way to exist and that's about it is; existing. I want to do so much more than that. I have a lot of big plans and dreams I would like to start on sooner than later and maybe over time this will help me reach those without all the medication assistance. Points for effort anyways, right? *grins*
Three to four months of catching up makes for a war and peace kind of post. Sorry about that. As always, lots to get out and I don't let it out here often enough away from the world of fb and other social networking. I try really hard to keep those places light and happy as there's enough crummy stuff in the world as is and folks could always use some more cheering up. I even hear tell a dream I had might have inspired someone to get back into movie making again *smiles* Just the thought of helping inspire someone is awesome. I have no talents for anything in an artistic fashion, but I try very hard to make folks smile and inspire when/where I can and encourage others to find their talents and learn to hone them and use them for great things. There's much awesome potential in the world and the more it gets unleashed the better things will get. I still have faith in that.
Think B said it was shower time now that he's used up all the hot water for a bath :-P Things have hoovered recently, but I have survived every day since and as they always have, they'll get better before they get worse again and then wash, rinse repeat. The saying is true, "What doesn't kill us makes us stronger." Just like R has been saying, I'm gonna be She-Hulk before all's said and done at this rate and for coming out better in the end after all I've been through and will go through and will help others through, I'm OK with that as long as I don't have to be green *laughs*.
Goodnight world. Hope you have sweet dreams and life treat you most excellent.
*hugs*
Wednesday, March 7, 2012
It's been awhile...
Have a feeling looking back I say that a lot. Taking the time to empty out the brain pan and let it settle is something I should do more often here yet always find myself running around and making excuses not to. I will try to work on it. I realize Yoda says "Do or do not. There is no "try".", but try is what I'm currently willing to put up to the table in hopes that life get back to a dull roar at some point.
Of course I've never minded the noise, but on occasion it would be nice to just have some quiet moments of reflection *smiles* Points for effort, at least.
State of life, the universe, and everything: It still goes. Hmmm... perhaps that's too short. A bit of elaboration is needed. It still goes... well? In general, that's true. I'm still sad about drama from last June that has kept one of my oldest friends from speaking to me and splintered my group of friends; truly hope and pray that resolves itself. Not going to say "sooner than later", though that is my hope. I just really do hope that it resolves itself at some point; any point even if it's later would be better than not at all. Health stuffs.... *sighs* Holding pattern. Which I suppose with this flavor of condition is to be expected. Meds haven't changed since the last time I posted. Prednisone is down to 3mg/day; mininum I can take without constant pain and risk of the pericarditis flaring up. Could be worse, so I'll take it gladly. Infusion coming up in a few weeks. Minimum amount of time in between is still 4 months and it's sadly just not enough. Next meet-up with Dr P and we'll see what other options we've got out there. As the infusion starts to wear off and my body starts to boost my immune system again, it starts to rebel against me.
B brought it to my attention the other day something I hadn't even thought about: everything I do that helps "boost" my immune system is wearing off all the things I'm taking to keep it lowered that much faster. Exercise. Eating/drinking things that are healthier to help boost it. Sex. Every one of those things and I'm sure more are combating the meds/infusion I take that are trying to intentionally trash my immune system to stop attacking me. When he brought this up I just had this clear vision of an incredibly vicious cycle. The more I do to try and better take care of myself the more things I have to take to counter their effects. I just boggled about that for a bit. Still do. It makes me question why I bother trying to improve on all these things healthy folks improve on if it's just going to hurt me more in the end. Color me confused and feeling more than a little lost. I know I'll "feel" better on the short terms (few days) eating better and getting my exercise on with the goal of losing weight to take pressure off my joints and muscles, but all that work is boosting my immune system which is just going to attack me harder the better it is leading to more pain to where I can't do things like exercise until I can get the pain under control again.
Yup. *boggles* is the word for it. Something else I guess I'll bring up with Dr P here in a few weeks.
On happy front news, B and I have been officially together 8 months as of Feb 27th. Not long I suppose in the grand scheme of things, but the time together so far has been awesome. I've found so much support in him on all fronts that I just didn't know it was possible to put that much incredible person into one body. He keeps me honest on taking care of myself as much as I can (even if I'm grumpy about it) and helps take care of me during the moments when I find I can't. I really am truly blessed. Happy isn't a strong enough word. Truly hope and pray this trend continues :-)
I find myself in any spare time I have rummaging around through fb and the interwebs finding bits of happiness and wisdom to share with the world. I guess I try to be a conduit for which others might find something to make them smile, perhaps help them gain wisdom or insight or on the lucky rare occasion, brings inspiration. My fb world is incredibly random, but I love sharing the bits of the world I find with others hoping that even just once they'll find something positive they have take away from it and go share with their own world. Perhaps I'm being a little too "Zen" about it, but I truly do believe we are made up of everyone we've ever had any contact with; physically, socially, digitally, etc. I think this is what makes us unique. We really are snowflakes *grins* And with this compilation of our "touches" of others throughout our lives and all over the world, we are stronger and wiser and able to take on anything life brings us and can help others do the same. I sometimes imagine a painting of myself compiled of every person I've ever had contact with and wonder just how "colorful" I would be or what shape I would take on *smiles*
And no, I haven't been smoking any of the "good" stuff. Being hold sick today with what seems to be a sinus infections has finally given me one of those rare "dull roar" in the chaos moments so thought I would bring folks up to speed.
Life isn't always as shiny as I would like it to be, but it's still pretty darn shiny and I'm happy. Currently, can't ask for more than that. And if I can ever get back to better than breaking even on the shiny I look forward to sharing the excess with others :-) Now back to my regularly scheduled strawberry halls chewing and funk getting-rid-of....ing. :-D
*hugsNlove*
Of course I've never minded the noise, but on occasion it would be nice to just have some quiet moments of reflection *smiles* Points for effort, at least.
State of life, the universe, and everything: It still goes. Hmmm... perhaps that's too short. A bit of elaboration is needed. It still goes... well? In general, that's true. I'm still sad about drama from last June that has kept one of my oldest friends from speaking to me and splintered my group of friends; truly hope and pray that resolves itself. Not going to say "sooner than later", though that is my hope. I just really do hope that it resolves itself at some point; any point even if it's later would be better than not at all. Health stuffs.... *sighs* Holding pattern. Which I suppose with this flavor of condition is to be expected. Meds haven't changed since the last time I posted. Prednisone is down to 3mg/day; mininum I can take without constant pain and risk of the pericarditis flaring up. Could be worse, so I'll take it gladly. Infusion coming up in a few weeks. Minimum amount of time in between is still 4 months and it's sadly just not enough. Next meet-up with Dr P and we'll see what other options we've got out there. As the infusion starts to wear off and my body starts to boost my immune system again, it starts to rebel against me.
B brought it to my attention the other day something I hadn't even thought about: everything I do that helps "boost" my immune system is wearing off all the things I'm taking to keep it lowered that much faster. Exercise. Eating/drinking things that are healthier to help boost it. Sex. Every one of those things and I'm sure more are combating the meds/infusion I take that are trying to intentionally trash my immune system to stop attacking me. When he brought this up I just had this clear vision of an incredibly vicious cycle. The more I do to try and better take care of myself the more things I have to take to counter their effects. I just boggled about that for a bit. Still do. It makes me question why I bother trying to improve on all these things healthy folks improve on if it's just going to hurt me more in the end. Color me confused and feeling more than a little lost. I know I'll "feel" better on the short terms (few days) eating better and getting my exercise on with the goal of losing weight to take pressure off my joints and muscles, but all that work is boosting my immune system which is just going to attack me harder the better it is leading to more pain to where I can't do things like exercise until I can get the pain under control again.
Yup. *boggles* is the word for it. Something else I guess I'll bring up with Dr P here in a few weeks.
On happy front news, B and I have been officially together 8 months as of Feb 27th. Not long I suppose in the grand scheme of things, but the time together so far has been awesome. I've found so much support in him on all fronts that I just didn't know it was possible to put that much incredible person into one body. He keeps me honest on taking care of myself as much as I can (even if I'm grumpy about it) and helps take care of me during the moments when I find I can't. I really am truly blessed. Happy isn't a strong enough word. Truly hope and pray this trend continues :-)
I find myself in any spare time I have rummaging around through fb and the interwebs finding bits of happiness and wisdom to share with the world. I guess I try to be a conduit for which others might find something to make them smile, perhaps help them gain wisdom or insight or on the lucky rare occasion, brings inspiration. My fb world is incredibly random, but I love sharing the bits of the world I find with others hoping that even just once they'll find something positive they have take away from it and go share with their own world. Perhaps I'm being a little too "Zen" about it, but I truly do believe we are made up of everyone we've ever had any contact with; physically, socially, digitally, etc. I think this is what makes us unique. We really are snowflakes *grins* And with this compilation of our "touches" of others throughout our lives and all over the world, we are stronger and wiser and able to take on anything life brings us and can help others do the same. I sometimes imagine a painting of myself compiled of every person I've ever had contact with and wonder just how "colorful" I would be or what shape I would take on *smiles*
And no, I haven't been smoking any of the "good" stuff. Being hold sick today with what seems to be a sinus infections has finally given me one of those rare "dull roar" in the chaos moments so thought I would bring folks up to speed.
Life isn't always as shiny as I would like it to be, but it's still pretty darn shiny and I'm happy. Currently, can't ask for more than that. And if I can ever get back to better than breaking even on the shiny I look forward to sharing the excess with others :-) Now back to my regularly scheduled strawberry halls chewing and funk getting-rid-of....ing. :-D
*hugsNlove*
Friday, July 1, 2011
"I've got sunshiiiiiiiiiine... on a cloudy day......"
Bout time I updated. All manners of stuff going on since the last post. So, without further delay...
Was able to get in with Dr P when he got back. Don't remember the date; think it wasn't until the week after the hospital/pericarditis "incident". Had "the conversation" with Dr P about the prednisone factor and my standard unhappiness about it and asking for other options.
Oh! The Tues before that, went to dermatologist. Lets start there. On my right elbow I've been losing pigmentation and hair and even my freckles to the left side of it in an ever widening area for about the last two months. Hard to describe just how it looks; almost translucent with a reddish/pinkish tinge. Weird. Also very smooth and soft now that all the hair's gone and has a really funky feeling to it from its side, not my fingertip side, when i touch it almost like it's raw. Has been hurting to sleep on. So as I looked a few weeks ago and noticed it has gotten HUGE since I first noticed it and hadn't been paying attention, called up Dr P's office and showed it to nurse J and she had doc take a look at a pic she took of it and he said go see Dr M. Well, been about a year so was time to see her anyways for regular checkup and she being ever suspicious, took a chunk out of my arm. She said it could be one of two things: if you get cortisone shots at any point sometimes about 6 months after the skin around the shot area can have a reaction just like mine OR there's a condition that's not fun that some inflammation patients can get that looks the same. Thus her taking a chunk out of me to make sure it was the former and not the latter. Told her I'd had some "tennis elbow" pain I was pretty sure was back in Dec or Jan and doc had given me a cortisone shot in the elbow so thankfully that scenario fit. Chunk came back neg on the bad stuff so she said to just wait it out and color and hair and hopefully freckles in the are will return. Whew. downside, about 6 or 7 days after she took out the chunk I broke the stitches on it and never went back to get them put back in. Going to have an incredibly ugly scar, but it can join the collection of other two like it from the two chunks she took out last year from my right leg when we discovered the inflammation in the medium/large blood vessels causing that funky discoloration. Happy to report that that's not NEARLY as bad as it used to be. Isn't gone, but my legs almost look human again ;-)
"The New Plan": So back to Dr P's visit. -1 chunk of flesh and +too much prednisone I head in to share my mind. Have learned I get a lot further in life in the last few years just saying what I think and dealing with consequences later and accepting I have absolutely no control on how people choose to react to what I say. Makes being honest a lot easier and with a bit less guilt for doing it. Anywho, I speak my peace. Same ole same ole. Please don't make me keep taking the prednisone. Please help me find an alternative. Dr M actually said if I was told prednisone was my only option that I was getting hoodwinked and to insist on other options. Ok, done :-)
Here's what we determined was the current situation: Rituxan at the last infusion rate kept UCTD pain completely away for about 8 weeks. Minimum amount of time Rituxan can be administered is minimum 16 weeks from the last infusion date. Rituxan SHOULD have also kept the pericarditis at bay, but didn't. Pericarditis symptoms started back up about 3 weeks after the last infusion, but came and went until they came and stayed a few weeks ago when I finally ended up seeing Dr C and hanging out in the ER unnecessarily for a day. The prednisone DOES keep the pain away on all levels; UCTD and pericarditis. I took the 30mg/day Dr C told me to for about 3 days. Then I went down to 20 for a few days then down to 10 then 5. 5mg wasn't quite enough to keep the pericarditis pain away so went back to 10 but the last few days I've got back up to 20 because the percarditis symptoms were starting to get a little worse and was starting to feel the UCTD pain again *grumbles*
Future situation discussion: Go ahead from the July 15th date of my second round of this infusion phase, plan the next one for Rituxan 16 weeks out from there. If the Rituxan doesn't keep at least the UCTD pain away for 16 weeks, we're going to look at other infusion options *sighs* We know this works, but we have to have something that lasts at least the minimum amount of time between infusions and Rituxan is 16 weeks. There are others that are shorter, but they're also not as stout. Will cross that bridge when the time comes. Prednisone conundrum - two options: keep taking it and shut the heck up cause it works and just keep adjusting threshold as needed to keep pericarditis away should infusion stuffs still not cut it OR take something else and drop prednisone and hope for the best. Alternate drug recommended was Arava (link is to generic version). Was supposed to take 10mg/day. Here's the thing: it's pretty much just an alternative to methotrexate. Yeah, that stuff that I was taking from Aug 09 to Aug 10 when I finally stopped because enough of my hair had fallen out to where I actually had a bald spot I couldn't hide anymore. And yes, this medication has the same possible side effect. ALSO it has the same anti-munchkin issue as the methotrexate; guaranteed birth defects. Thankfully, IUD is still firmly in place so chances of munchkins are remarkably nill. But the thought of putting something in my body (again) that could damage any future munchkin I may have the honor of bearing just squigs me out, even if it helps my pain in the mean time. I did fill this prescription and I did take it for about two weeks. Stopped about 3 or 4 days ago just because the mental factors of dealing with losing my hair again and botching the munchkin factor, even if it's not a factor yet and may never be, just was too much to deal with in the brainpan. Reporting no diff between taking it and not taking it pain wise since I was told to keep taking the prednisone until at least getting through the second round of this infusion. I've pretty much concluded that even though I hate the side effects of prednisone, I will take them over the alternatives.
I'm down 22lbs as of today. The prednisone is keeping me steady, but I'm watching what I'm eating and how much and in the last 3 weeks, haven't gained anything. I believe I now have the willpower and the knowledge to eat healthier and eat less. Also going to kick WiiFit back in (frak you downstairs neighbor, deal) next week once this infusion has had a few days to sink in and settle and hopefully that along with still taking the prednisone will allow me to get the weight loss going again and NOT be in pain. After second infusion, going to stop prednisone again cold turkey just like last time and go without as long as possible. When I have symptoms of either the UCTD or pericarditis come up, will start it up again. Know how much it takes to get ahead of the pain and can steadily lower from there once it's under control to find new threshold. Prednisone and plaquenil just mean should munchkin ever come along, no breast feeding. Like the concept of doing it, but just being able to have the miracle of munchkin at all would do me fine. Rituxan is still a class C drug. This means no studies have been done on women taking it and having munchkins. Can still only find the one documentation of one woman who had a munchkin while on it and munchkin was fine. Of course that was birth; no telling any long term side effects now that it's probably two or three years old since that record. But here's hoping it's still peachy and didn't inherit mom's UCTD issues *crosses fingers* Down side to the 50/50 genetics of munchkin having; toss up between what all gets put in from who. Lots of prayers if I ever get to have that decision and some serious hard thinking on the matter, but right now I would still like to take the chance as the meds I'm on as of this moment, I believe I could still have a healthy munchkin.
Know I have been going on about that a lot since R and I divorced. There are a lot of factors that keep bringing it to the forefront of my mind. Mainly him holding me and my condition he refused to try and understand solely reponsible for not being able to provide him the family that I, as his wife, was supposed to give him and the fact that now that I'm 30, this is the same age my mom was when she had me. Yes, I feel it is somehow my obligation to go forth and populate the world with smart gamer munchkins. But outside factors sadly always have to be taken into consideration, like health of the momma. My mom was in pretty good health when she had me and while I was growing up, but with the single mom thing she was working back to back 16 hour shifts at the hospital/nursing home over the years on the weekends so I never really got to do a lot of "family" fun stuff with her cause poor lady was always tired and worn out, understandably. I don't want to be that kind of mom if I can help it as I thankfully, currently, don't have the kind of job that keeps me ridiculously long hours or requires me to always be on my feet. That and with the right combination of drugs and sticking to my cardinal rules, I can not be in pain and not let it effect my ability to interact with any future family if I take care of myself. Yeah, I want a family some day if God's got it in the cards. If he doesn't? Perfectly happy dying an old cat lady some day with Munchkin (cause we agreed when she was a kitten she has to live forever) and Drusilla. Life's been rough, but can always get worse. And tends to, but then thankfully it gets better. Is just always trying to find that balance that gets things futzy, but learn a lot on the way.
Currently, things are pretty shiny. L is still barely acknowledging my existence which isn't shiny because I miss our friendship, but back to what I said initially; I have no control over how he chooses to deal or not deal with things and I simply can't stress about it anymore. Everything outside of our now 'barely even friends' is shiny. Roomie's world got upturned recently in a non-shiny way, but hopefully things will be shiny again for him again in the next few months. Gaming stuffs has its drama now and then as we're back to a large-ish group, but it always goes back to a dull roar eventually and the gaming awesomeness goes on. I try to hold on to optimism but it's not always easy. Had a hard time last week with it. Had a really rough Monday. Broke out that honesty in the most honest message to someone I think I've ever written. As in, I said everything I was thinking no matter how much it terrified me of how they may react and just prayed for the best. Yeah, change of shiny outcome was fairly non-existent. Especially with the content. I believe I left nothing out and was as completely forward and open as I have ever been with anyone. A long talk over coffee with my good friend C that night about life, the universe and everything and then finally checked in to see what the aftermath was to my moment of honesty (*laughs* moment... took all day to write and was more like writing war and peace) and all in all, positive outcome. The absolute LAST thing I expected. Guess after the last few years, positive outcome is the last reaction I've had to honesty. Maybe a delayed one later after it sinks in, but never initially. Concerns were discussed over some of the content, other things were ignored completely and probably for the best. But still have a good friend out of the whole deal and for that I am incredibly thankful. It's nice to know there are a few out there I feel I can say absolutely anything to, good, bad and ugly, and still have a close friend after. I truly am blessed with the friends I have and hopefully the future friendships and relationships I'll make as time goes on with those I'm close to.
Today, life is good. Not all that came before were shiny, but most were. What comes ahead is likely to not be shiny, but there will be a balance. After getting so much out of my head in the last week and finally making a decision on how I want to go about managing my health and determined to stick with it until such time as things possibly change, I almost feel lighter. Oh, which apparently I am *grins* To end on a really happy note, MULTIPLE people in the last few days, including ALL of the staff here in the infusion room here today who haven't seen me since Jan ALL commented about how I looked so different and better and healthier and happier and they could really tell I'd lost weight. I still blush every time someone compliments me. I'm just not used to them and definitely not used to taking them well, but I really have been making a conscious effort to thank people and not instantly blow them off as just being polite. Maybe I really am looking better and doing better unto myself and the happiness shows on the outside. I hope so. Happy is good when it happens and I like to maintain that as long as the powers that be allow. Made a lot of hard decisions in a short amount of time recently, but with honesty and faith and God and great friends, I've definitely come a long way in the last two weeks and learned so much about how well things have the potential to turn out when you take the time to identify what you think will make you happy and just go for it and not stress about the consequences until there are some there to deal with; may be pleasantly surprised when there aren't any at all. First time for everything, but I'll take it as often as I can hopefully get it in the future.
Still lots in the brainpan, but for now it's a quiet controlled murmur that's completely managable. Will take life as it happens and try to keep as good company as I can through it and keep telling myself for every bad that happens, good will follow eventually. Just gotta keep smiling and holding hands and not lose faith. When I'm happy, I have lots of happy leftover to share with everyone else and that just adds more happy for me. The circle is complete :-)
Was able to get in with Dr P when he got back. Don't remember the date; think it wasn't until the week after the hospital/pericarditis "incident". Had "the conversation" with Dr P about the prednisone factor and my standard unhappiness about it and asking for other options.
Oh! The Tues before that, went to dermatologist. Lets start there. On my right elbow I've been losing pigmentation and hair and even my freckles to the left side of it in an ever widening area for about the last two months. Hard to describe just how it looks; almost translucent with a reddish/pinkish tinge. Weird. Also very smooth and soft now that all the hair's gone and has a really funky feeling to it from its side, not my fingertip side, when i touch it almost like it's raw. Has been hurting to sleep on. So as I looked a few weeks ago and noticed it has gotten HUGE since I first noticed it and hadn't been paying attention, called up Dr P's office and showed it to nurse J and she had doc take a look at a pic she took of it and he said go see Dr M. Well, been about a year so was time to see her anyways for regular checkup and she being ever suspicious, took a chunk out of my arm. She said it could be one of two things: if you get cortisone shots at any point sometimes about 6 months after the skin around the shot area can have a reaction just like mine OR there's a condition that's not fun that some inflammation patients can get that looks the same. Thus her taking a chunk out of me to make sure it was the former and not the latter. Told her I'd had some "tennis elbow" pain I was pretty sure was back in Dec or Jan and doc had given me a cortisone shot in the elbow so thankfully that scenario fit. Chunk came back neg on the bad stuff so she said to just wait it out and color and hair and hopefully freckles in the are will return. Whew. downside, about 6 or 7 days after she took out the chunk I broke the stitches on it and never went back to get them put back in. Going to have an incredibly ugly scar, but it can join the collection of other two like it from the two chunks she took out last year from my right leg when we discovered the inflammation in the medium/large blood vessels causing that funky discoloration. Happy to report that that's not NEARLY as bad as it used to be. Isn't gone, but my legs almost look human again ;-)
"The New Plan": So back to Dr P's visit. -1 chunk of flesh and +too much prednisone I head in to share my mind. Have learned I get a lot further in life in the last few years just saying what I think and dealing with consequences later and accepting I have absolutely no control on how people choose to react to what I say. Makes being honest a lot easier and with a bit less guilt for doing it. Anywho, I speak my peace. Same ole same ole. Please don't make me keep taking the prednisone. Please help me find an alternative. Dr M actually said if I was told prednisone was my only option that I was getting hoodwinked and to insist on other options. Ok, done :-)
Here's what we determined was the current situation: Rituxan at the last infusion rate kept UCTD pain completely away for about 8 weeks. Minimum amount of time Rituxan can be administered is minimum 16 weeks from the last infusion date. Rituxan SHOULD have also kept the pericarditis at bay, but didn't. Pericarditis symptoms started back up about 3 weeks after the last infusion, but came and went until they came and stayed a few weeks ago when I finally ended up seeing Dr C and hanging out in the ER unnecessarily for a day. The prednisone DOES keep the pain away on all levels; UCTD and pericarditis. I took the 30mg/day Dr C told me to for about 3 days. Then I went down to 20 for a few days then down to 10 then 5. 5mg wasn't quite enough to keep the pericarditis pain away so went back to 10 but the last few days I've got back up to 20 because the percarditis symptoms were starting to get a little worse and was starting to feel the UCTD pain again *grumbles*
Future situation discussion: Go ahead from the July 15th date of my second round of this infusion phase, plan the next one for Rituxan 16 weeks out from there. If the Rituxan doesn't keep at least the UCTD pain away for 16 weeks, we're going to look at other infusion options *sighs* We know this works, but we have to have something that lasts at least the minimum amount of time between infusions and Rituxan is 16 weeks. There are others that are shorter, but they're also not as stout. Will cross that bridge when the time comes. Prednisone conundrum - two options: keep taking it and shut the heck up cause it works and just keep adjusting threshold as needed to keep pericarditis away should infusion stuffs still not cut it OR take something else and drop prednisone and hope for the best. Alternate drug recommended was Arava (link is to generic version). Was supposed to take 10mg/day. Here's the thing: it's pretty much just an alternative to methotrexate. Yeah, that stuff that I was taking from Aug 09 to Aug 10 when I finally stopped because enough of my hair had fallen out to where I actually had a bald spot I couldn't hide anymore. And yes, this medication has the same possible side effect. ALSO it has the same anti-munchkin issue as the methotrexate; guaranteed birth defects. Thankfully, IUD is still firmly in place so chances of munchkins are remarkably nill. But the thought of putting something in my body (again) that could damage any future munchkin I may have the honor of bearing just squigs me out, even if it helps my pain in the mean time. I did fill this prescription and I did take it for about two weeks. Stopped about 3 or 4 days ago just because the mental factors of dealing with losing my hair again and botching the munchkin factor, even if it's not a factor yet and may never be, just was too much to deal with in the brainpan. Reporting no diff between taking it and not taking it pain wise since I was told to keep taking the prednisone until at least getting through the second round of this infusion. I've pretty much concluded that even though I hate the side effects of prednisone, I will take them over the alternatives.
I'm down 22lbs as of today. The prednisone is keeping me steady, but I'm watching what I'm eating and how much and in the last 3 weeks, haven't gained anything. I believe I now have the willpower and the knowledge to eat healthier and eat less. Also going to kick WiiFit back in (frak you downstairs neighbor, deal) next week once this infusion has had a few days to sink in and settle and hopefully that along with still taking the prednisone will allow me to get the weight loss going again and NOT be in pain. After second infusion, going to stop prednisone again cold turkey just like last time and go without as long as possible. When I have symptoms of either the UCTD or pericarditis come up, will start it up again. Know how much it takes to get ahead of the pain and can steadily lower from there once it's under control to find new threshold. Prednisone and plaquenil just mean should munchkin ever come along, no breast feeding. Like the concept of doing it, but just being able to have the miracle of munchkin at all would do me fine. Rituxan is still a class C drug. This means no studies have been done on women taking it and having munchkins. Can still only find the one documentation of one woman who had a munchkin while on it and munchkin was fine. Of course that was birth; no telling any long term side effects now that it's probably two or three years old since that record. But here's hoping it's still peachy and didn't inherit mom's UCTD issues *crosses fingers* Down side to the 50/50 genetics of munchkin having; toss up between what all gets put in from who. Lots of prayers if I ever get to have that decision and some serious hard thinking on the matter, but right now I would still like to take the chance as the meds I'm on as of this moment, I believe I could still have a healthy munchkin.
Know I have been going on about that a lot since R and I divorced. There are a lot of factors that keep bringing it to the forefront of my mind. Mainly him holding me and my condition he refused to try and understand solely reponsible for not being able to provide him the family that I, as his wife, was supposed to give him and the fact that now that I'm 30, this is the same age my mom was when she had me. Yes, I feel it is somehow my obligation to go forth and populate the world with smart gamer munchkins. But outside factors sadly always have to be taken into consideration, like health of the momma. My mom was in pretty good health when she had me and while I was growing up, but with the single mom thing she was working back to back 16 hour shifts at the hospital/nursing home over the years on the weekends so I never really got to do a lot of "family" fun stuff with her cause poor lady was always tired and worn out, understandably. I don't want to be that kind of mom if I can help it as I thankfully, currently, don't have the kind of job that keeps me ridiculously long hours or requires me to always be on my feet. That and with the right combination of drugs and sticking to my cardinal rules, I can not be in pain and not let it effect my ability to interact with any future family if I take care of myself. Yeah, I want a family some day if God's got it in the cards. If he doesn't? Perfectly happy dying an old cat lady some day with Munchkin (cause we agreed when she was a kitten she has to live forever) and Drusilla. Life's been rough, but can always get worse. And tends to, but then thankfully it gets better. Is just always trying to find that balance that gets things futzy, but learn a lot on the way.
Currently, things are pretty shiny. L is still barely acknowledging my existence which isn't shiny because I miss our friendship, but back to what I said initially; I have no control over how he chooses to deal or not deal with things and I simply can't stress about it anymore. Everything outside of our now 'barely even friends' is shiny. Roomie's world got upturned recently in a non-shiny way, but hopefully things will be shiny again for him again in the next few months. Gaming stuffs has its drama now and then as we're back to a large-ish group, but it always goes back to a dull roar eventually and the gaming awesomeness goes on. I try to hold on to optimism but it's not always easy. Had a hard time last week with it. Had a really rough Monday. Broke out that honesty in the most honest message to someone I think I've ever written. As in, I said everything I was thinking no matter how much it terrified me of how they may react and just prayed for the best. Yeah, change of shiny outcome was fairly non-existent. Especially with the content. I believe I left nothing out and was as completely forward and open as I have ever been with anyone. A long talk over coffee with my good friend C that night about life, the universe and everything and then finally checked in to see what the aftermath was to my moment of honesty (*laughs* moment... took all day to write and was more like writing war and peace) and all in all, positive outcome. The absolute LAST thing I expected. Guess after the last few years, positive outcome is the last reaction I've had to honesty. Maybe a delayed one later after it sinks in, but never initially. Concerns were discussed over some of the content, other things were ignored completely and probably for the best. But still have a good friend out of the whole deal and for that I am incredibly thankful. It's nice to know there are a few out there I feel I can say absolutely anything to, good, bad and ugly, and still have a close friend after. I truly am blessed with the friends I have and hopefully the future friendships and relationships I'll make as time goes on with those I'm close to.
Today, life is good. Not all that came before were shiny, but most were. What comes ahead is likely to not be shiny, but there will be a balance. After getting so much out of my head in the last week and finally making a decision on how I want to go about managing my health and determined to stick with it until such time as things possibly change, I almost feel lighter. Oh, which apparently I am *grins* To end on a really happy note, MULTIPLE people in the last few days, including ALL of the staff here in the infusion room here today who haven't seen me since Jan ALL commented about how I looked so different and better and healthier and happier and they could really tell I'd lost weight. I still blush every time someone compliments me. I'm just not used to them and definitely not used to taking them well, but I really have been making a conscious effort to thank people and not instantly blow them off as just being polite. Maybe I really am looking better and doing better unto myself and the happiness shows on the outside. I hope so. Happy is good when it happens and I like to maintain that as long as the powers that be allow. Made a lot of hard decisions in a short amount of time recently, but with honesty and faith and God and great friends, I've definitely come a long way in the last two weeks and learned so much about how well things have the potential to turn out when you take the time to identify what you think will make you happy and just go for it and not stress about the consequences until there are some there to deal with; may be pleasantly surprised when there aren't any at all. First time for everything, but I'll take it as often as I can hopefully get it in the future.
Still lots in the brainpan, but for now it's a quiet controlled murmur that's completely managable. Will take life as it happens and try to keep as good company as I can through it and keep telling myself for every bad that happens, good will follow eventually. Just gotta keep smiling and holding hands and not lose faith. When I'm happy, I have lots of happy leftover to share with everyone else and that just adds more happy for me. The circle is complete :-)
Tuesday, June 7, 2011
Welcome to the jungle...
And so the balance continues...
Spent my Monday going between a Rheumatologists office I didn't know (Dr C) as Dr P's out on vacation until today and the ER as he didn't seem entirely too sure what to do with me.From about May 26th I've felt the pericarditis come back. I lie. From about 3 weeks after my second infusion I've felt it. Off and on. A bit of pressure in my chest like the world is slowly starting to sit down on me and then.... gone within about 48 hours. Never really got too bad. Just... here and there. But on May 26th it came and sadly didn't go away on its own. Started like it always does. Hurts to breathe in deep, so breathing in becomes more shallow. Then it hurts to try and breathe and lie down at the same time, but it isn't too bad just yet so only losing a few hours sleep. Then step those up half notches every day for the last week and a half until Sun night. Yes, there was sleep, but not a heck of a lot. I couldn't sleep on my right side because the pressure on my heart and lungs from the inflammation was too much. Back was a little better, but still couldn't breathe in too far. Left side was a bit better than that, thus my few hours sleep when the not breathing in deep without pain thing wasn't waking me up. Tried face down which wasn't bad but haven't been able to sleep like that since I was a kid so no go.
I know how it can feel if I let it go. I've honestly already let it go on longer than I would have in the past just because I was being stubborn and stupid thinking it would just go away on its own. Just like the few times it'd come up since the Rituxan infusion. Just kept hoping this time would be just like those. Those, of course, were flukes. Roommate B pointed out that as I'd been taking the prednisone so long about 3 weeks after going off of it cold turkey after the last Rituxan infusion, it probably took it that long to completely clear my system. I sadly have to admit that I think he's right. It was naive of me to think for even a second that it was the plaquenil keeping away the pericarditis. Stupid even. But it's what I desperately wanted and needed to believe so that I could convince myself I would never have to take prednisone again or experience it's side effects. Per usual, God's put me in my place and shown me that I have absolutely no control over my body and what it decides to do or when it decides to hurt.
After seeing Dr C and telling him exactly what the issue was and that I only needed to have two tests to confirm that it was the return of the pericarditis, he sent me down to the ER to get 4 tests run where I spent about 5 hours of my day. I explained to him as nicely as I could manage that the EKG and chest x-rays never show anything. They didn't for 10 years before the last two I haven't had to deal with this so why should they now. In his father stubborn old man voice, God bless him, he told me that things change over time and it's possible something might show up. Yes sir, you're right, it's possible. But I know what this is. ALL you need to do is the ECHO to see right there on the screen the inflammation and fluid inside the paracardial sac around my heart and bloodwork to show my white blood cell count has skyrocketed again outside normal parameters (which it has been for awhile with my starting to feel the UCTD pain in my hands, elbows, feet and knees) and you prescribe me an anti-inflammatory (I begged nearly in tears for anything but prednisone) and I get to go home and take this and not lay down into later Mon night and hope by that point the pressure around my heart has lessened enough to where I can sleep.
Well, he of course has other things in mind. I applaud him wanting to be thorough, but I'm not made of money by any stretch of the imagination. Even with insurance, I'm dreading the bills of yesterday when they come in. And of course, the last test they got on me was the ECHO and sure enough while I was talking pericarditis tech talk with the awesome tech guy running the test (who by the way apparently thought my tech speak on this subject was shiny enough to ask me if I actually worked at the hospital *grins*), there was it. I told him the two places he would really be able to get a good view of it. Thankfully, it wasn't awful yet. I hadn't let it go as far as to where I couldn't lie down at all so most everything you could see was just the shiny bright white from the inflammation, but just there towards the bottom as he maneuvered his picture wand of awesome under my ribs to check out the bottom, that's where the worst of the inflammation normally resides. And with it being angry more on the backside, it pushes onto my lugs thus leading to the painful to breathe thing.
I really didn't think I would ever have to go through this again. As mentioned earlier, that was naivety on my part. When I was diagnosed with UCTD and put on so many different flavors of things until we found something that worked, one of those was keeping the pericarditis at bay. I had really hoped that it was the plaquenil but deep down I knew better. I had the Rituxan infusion last July and was able to go from the 15-20mg of prednisone I was taking a day to 5mg as the new threshold and come off of the methotrexate completely; still no signs of the pericarditis so mustn't have been the methotrexate keeping it away. Then second round of Rituxan end of Feb/early March of this year and my going cold turkey off the prednisone and still not pericarditis symptoms.... for a few weeks. Yes, I should have mentioned something to Dr P when I started feeling it again. But when it went away within a couple days of starting, I really thought the Rituxan was going to be able to keep it at bay. What I don't understand and will have to ask Dr P later this morning is why is it that the Rituxan can replace the prednisone for keeping away all the pain that I have with UCTD (for however short lived it is), but it doesn't seem to remove the symptoms of the pericarditis. You would think if it's for assisting with inflammation and pericarditis is an inflammation based health issue I would be covered. Guess that's a mystery for about 4 1/2 hours from now.
Dr C and the ER Doc (nice lady) and my old cardiologist that gave up on me many years ago and sent me to Dr P when he couldn't figure out why my pericarditis kept re-occurring to the point of showing up almost every 3 weeks by the time my UCTD kicked in appear to have had a pow-wow earlier today after x-rays and bloodwork and what not and agreed that I needed to go back on the prednisone to get ahead of this inflammation. I tried to reiterate to the ER Doc and then Dr C when I got back upstairs post ER the side effects of prednisone that I had and absolutely begged for an alternative. Apparently there isn't one that's this strong. Back in the day 800mg of ibuprofen 3 times a day (equiv of indomethicin) would have taken care of it, all be it over the course of about a week to week and a half. Joy of steroids is they are a heck of a lot stronger and work a heck of a lot faster. But I keep getting told prednisone is my only option for this issue. They put me back on it at 30mg for the next two weeks.
And guess where I am and 2:45 in the morning on Tues until now (just about 3:45). Awake. Ravenous. And raiding the fridge. Thanks to my diet, I have non-crazy options around for late night snacking, but it's still going to cause me to gain weight. I'm eating more as of right now raiding the fridge tonight and if I make it back into bed, digestion I'm sure is going to be angry at my snacks of a glass of tea, yogurt and 3 cheese sticks. B went grocery shopping and has all sorts of tastier things to snack on, but I know what happened last time. The 20lbs I gained in the 1st month I was on prednisone in May/June 2009 I just got off from mid-April 2011 to June 4th 2011. It took me two years to lose those 20lbs and not even a week after I'm back on prednisone and feel like I'm starving in the middle of the night. And thanks to the cardinal rules of though shalt not go to bed hungry lest ye be in pain, I've got that going on too. I didn't want to eat more before bed even though I could feel it. B in his awesomeness let me borrow some pillows and a quilt and building a soft ramp that I could sleep on trying to keep me elevated without sitting straight up or lying flat. I could still feel the pressure when we were done, even after the 30mg's of prednisone around 5pm Mon when I finally made it home, but not eating has caused my legs to be angry something fierce. And since I'm already on the prednisone, I can't take anything but more prednisone to try and help with the pain. Welcome to my vicious cycle.
At nearly 4am, I'm wide awake writing up my last 24 hours still hungry, still hurting, and feeling rather devastated about being back on the prednisone. Talked with B about my history with the pericarditis condition earlier in the evening (thanks for the shoulder and sorry about the snot) and I told him that when I had the first Rituxan infusion and found my new prednisone threshold that J, Dr P's nurse, told me that in the grand scheme of things if 5mg's was my threshold, it wasn't going to be that bad for me over time. ... I just know what this drug does to me. The side effects are awful. And I JUST lost all that weight and with the chest pain, it's not like I can go for a walk; can barely make it up the 3 flights of stairs or even off the couch to the kitchen without having to stop and try and slow down my heart so I can breathe until this inflammation goes away.
Maybe there's an alternative to the Rituxan that will cover both the UCTD and the pericarditis. Maybe I'll be stuck having to do both the Rituxan and the prednisone at a low dose forever. I hate pills. I hate drugs. But unfortunately they're the only things that let me feel "normal". That let me feel a world without pain. I try really hard to stay optimistic, but I find I continue to fail a lot. Told B earlier that I know we're always told that God has a plan, but I sure wish he'd get the big reveal on for sooner than later. I really do feel lost. Yes, I have many many many things to be appreciative of as there are so many out there with worse conditions than my own. Heck, one nice lady I know from my old church back home has been battling cancer a really long time with crazy chemo stuff of awful and so far has come out on top and I have faith God's going to keep it that way for her. I never want to imagine having to go through those kinds of levels of chemo; my infusions of the Rituxan and having gone through the methotrexate injections are plenty. But by golly... I really wish I knew what I'd done to make the poo list to spend my age 18+ years in constant physical pain without the help of drugs. I really am sorry, Lord, for whatever I did to piss you off. Glad I'm not really having to burden anyone else with this right now. I know L would be here for me if things had turned out different, but I hate anyone seeing me in this state. Even embarrassing having B the roommie have to see me break down in tears earlier. I just try so hard to understand it all and with all my 12 years of experience going through these inflammation based issues... I still can't seem to get a handle on the emotional side of it. It's still hard to accept that these are conditions that will never truly go away, they'll just be masked as best we can with drugs the rest of my life. Guess it means I'm never moving out of the Austin area because I never want to have to explain all this to another doctor somewhere else in the future and have them decide what's working isn't the best course and start me all over again. Really couldn't take that. Good thing I like it around here and have awesome friends who support me when I let me and sometimes even when I don't. As much as I try to handle all this on my own, I know I can't. God + Friends = Awesome Support Network. Is just a matter of my being able to let go of the emotional side and share; I truly do hate being a burden and I can't even get rid of that feeling when I directly talk about this stuff to anyone. For whatever reason God gave me this to bear on my own and sharing seems like I'm trying to divvy it out and folks already got enough issues to deal with without worry about me. The conditions themselves aren't going to kill me; just makes you want to not exist every now and then when they're at their worst. As of right now I can still move and breathe so we're far from our worst.. least for now.
Appreciate the digital world letting me ramble. As I said in the beginning, that is what this is for. So that I only burden those who choose to take the time to read this and listen to me ramble. Venting all this here helps me not bombard everyone elsewhere who could care less about what's going on with me medically. Not the kinds of things you normally want to share with the world anyways I suppose. I for the few days a year there's absolutely no pain, I absolutely must learn to enjoy them to the fullest. Go swimming or something... play lots of bass on RockBand and hopefully have lots of smiles and laughs and good stories to tell and maybe some more to make. It's easy to get lost in the dark void of pain. Must really try to keep a firm grip on the rope that leads out and take advantage of being let out of my hole when I can. There's so much I've missed out on since I was 18 and even more since Feb 2009. Never know how long we've got here so I guess I need to start making the most of it once we get this meds thing figured out again.
Hope all of you are resting soundly, my friends, and thank you for being awesome and really hope the world treats you well and allows you to live life to the fullest, as they say.
*hugs*
Spent my Monday going between a Rheumatologists office I didn't know (Dr C) as Dr P's out on vacation until today and the ER as he didn't seem entirely too sure what to do with me.
I know how it can feel if I let it go. I've honestly already let it go on longer than I would have in the past just because I was being stubborn and stupid thinking it would just go away on its own. Just like the few times it'd come up since the Rituxan infusion. Just kept hoping this time would be just like those. Those, of course, were flukes. Roommate B pointed out that as I'd been taking the prednisone so long about 3 weeks after going off of it cold turkey after the last Rituxan infusion, it probably took it that long to completely clear my system. I sadly have to admit that I think he's right. It was naive of me to think for even a second that it was the plaquenil keeping away the pericarditis. Stupid even. But it's what I desperately wanted and needed to believe so that I could convince myself I would never have to take prednisone again or experience it's side effects. Per usual, God's put me in my place and shown me that I have absolutely no control over my body and what it decides to do or when it decides to hurt.
After seeing Dr C and telling him exactly what the issue was and that I only needed to have two tests to confirm that it was the return of the pericarditis, he sent me down to the ER to get 4 tests run where I spent about 5 hours of my day. I explained to him as nicely as I could manage that the EKG and chest x-rays never show anything. They didn't for 10 years before the last two I haven't had to deal with this so why should they now. In his father stubborn old man voice, God bless him, he told me that things change over time and it's possible something might show up. Yes sir, you're right, it's possible. But I know what this is. ALL you need to do is the ECHO to see right there on the screen the inflammation and fluid inside the paracardial sac around my heart and bloodwork to show my white blood cell count has skyrocketed again outside normal parameters (which it has been for awhile with my starting to feel the UCTD pain in my hands, elbows, feet and knees) and you prescribe me an anti-inflammatory (I begged nearly in tears for anything but prednisone) and I get to go home and take this and not lay down into later Mon night and hope by that point the pressure around my heart has lessened enough to where I can sleep.
Well, he of course has other things in mind. I applaud him wanting to be thorough, but I'm not made of money by any stretch of the imagination. Even with insurance, I'm dreading the bills of yesterday when they come in. And of course, the last test they got on me was the ECHO and sure enough while I was talking pericarditis tech talk with the awesome tech guy running the test (who by the way apparently thought my tech speak on this subject was shiny enough to ask me if I actually worked at the hospital *grins*), there was it. I told him the two places he would really be able to get a good view of it. Thankfully, it wasn't awful yet. I hadn't let it go as far as to where I couldn't lie down at all so most everything you could see was just the shiny bright white from the inflammation, but just there towards the bottom as he maneuvered his picture wand of awesome under my ribs to check out the bottom, that's where the worst of the inflammation normally resides. And with it being angry more on the backside, it pushes onto my lugs thus leading to the painful to breathe thing.
I really didn't think I would ever have to go through this again. As mentioned earlier, that was naivety on my part. When I was diagnosed with UCTD and put on so many different flavors of things until we found something that worked, one of those was keeping the pericarditis at bay. I had really hoped that it was the plaquenil but deep down I knew better. I had the Rituxan infusion last July and was able to go from the 15-20mg of prednisone I was taking a day to 5mg as the new threshold and come off of the methotrexate completely; still no signs of the pericarditis so mustn't have been the methotrexate keeping it away. Then second round of Rituxan end of Feb/early March of this year and my going cold turkey off the prednisone and still not pericarditis symptoms.... for a few weeks. Yes, I should have mentioned something to Dr P when I started feeling it again. But when it went away within a couple days of starting, I really thought the Rituxan was going to be able to keep it at bay. What I don't understand and will have to ask Dr P later this morning is why is it that the Rituxan can replace the prednisone for keeping away all the pain that I have with UCTD (for however short lived it is), but it doesn't seem to remove the symptoms of the pericarditis. You would think if it's for assisting with inflammation and pericarditis is an inflammation based health issue I would be covered. Guess that's a mystery for about 4 1/2 hours from now.
Dr C and the ER Doc (nice lady) and my old cardiologist that gave up on me many years ago and sent me to Dr P when he couldn't figure out why my pericarditis kept re-occurring to the point of showing up almost every 3 weeks by the time my UCTD kicked in appear to have had a pow-wow earlier today after x-rays and bloodwork and what not and agreed that I needed to go back on the prednisone to get ahead of this inflammation. I tried to reiterate to the ER Doc and then Dr C when I got back upstairs post ER the side effects of prednisone that I had and absolutely begged for an alternative. Apparently there isn't one that's this strong. Back in the day 800mg of ibuprofen 3 times a day (equiv of indomethicin) would have taken care of it, all be it over the course of about a week to week and a half. Joy of steroids is they are a heck of a lot stronger and work a heck of a lot faster. But I keep getting told prednisone is my only option for this issue. They put me back on it at 30mg for the next two weeks.
And guess where I am and 2:45 in the morning on Tues until now (just about 3:45). Awake. Ravenous. And raiding the fridge. Thanks to my diet, I have non-crazy options around for late night snacking, but it's still going to cause me to gain weight. I'm eating more as of right now raiding the fridge tonight and if I make it back into bed, digestion I'm sure is going to be angry at my snacks of a glass of tea, yogurt and 3 cheese sticks. B went grocery shopping and has all sorts of tastier things to snack on, but I know what happened last time. The 20lbs I gained in the 1st month I was on prednisone in May/June 2009 I just got off from mid-April 2011 to June 4th 2011. It took me two years to lose those 20lbs and not even a week after I'm back on prednisone and feel like I'm starving in the middle of the night. And thanks to the cardinal rules of though shalt not go to bed hungry lest ye be in pain, I've got that going on too. I didn't want to eat more before bed even though I could feel it. B in his awesomeness let me borrow some pillows and a quilt and building a soft ramp that I could sleep on trying to keep me elevated without sitting straight up or lying flat. I could still feel the pressure when we were done, even after the 30mg's of prednisone around 5pm Mon when I finally made it home, but not eating has caused my legs to be angry something fierce. And since I'm already on the prednisone, I can't take anything but more prednisone to try and help with the pain. Welcome to my vicious cycle.
At nearly 4am, I'm wide awake writing up my last 24 hours still hungry, still hurting, and feeling rather devastated about being back on the prednisone. Talked with B about my history with the pericarditis condition earlier in the evening (thanks for the shoulder and sorry about the snot) and I told him that when I had the first Rituxan infusion and found my new prednisone threshold that J, Dr P's nurse, told me that in the grand scheme of things if 5mg's was my threshold, it wasn't going to be that bad for me over time. ... I just know what this drug does to me. The side effects are awful. And I JUST lost all that weight and with the chest pain, it's not like I can go for a walk; can barely make it up the 3 flights of stairs or even off the couch to the kitchen without having to stop and try and slow down my heart so I can breathe until this inflammation goes away.
Maybe there's an alternative to the Rituxan that will cover both the UCTD and the pericarditis. Maybe I'll be stuck having to do both the Rituxan and the prednisone at a low dose forever. I hate pills. I hate drugs. But unfortunately they're the only things that let me feel "normal". That let me feel a world without pain. I try really hard to stay optimistic, but I find I continue to fail a lot. Told B earlier that I know we're always told that God has a plan, but I sure wish he'd get the big reveal on for sooner than later. I really do feel lost. Yes, I have many many many things to be appreciative of as there are so many out there with worse conditions than my own. Heck, one nice lady I know from my old church back home has been battling cancer a really long time with crazy chemo stuff of awful and so far has come out on top and I have faith God's going to keep it that way for her. I never want to imagine having to go through those kinds of levels of chemo; my infusions of the Rituxan and having gone through the methotrexate injections are plenty. But by golly... I really wish I knew what I'd done to make the poo list to spend my age 18+ years in constant physical pain without the help of drugs. I really am sorry, Lord, for whatever I did to piss you off. Glad I'm not really having to burden anyone else with this right now. I know L would be here for me if things had turned out different, but I hate anyone seeing me in this state. Even embarrassing having B the roommie have to see me break down in tears earlier. I just try so hard to understand it all and with all my 12 years of experience going through these inflammation based issues... I still can't seem to get a handle on the emotional side of it. It's still hard to accept that these are conditions that will never truly go away, they'll just be masked as best we can with drugs the rest of my life. Guess it means I'm never moving out of the Austin area because I never want to have to explain all this to another doctor somewhere else in the future and have them decide what's working isn't the best course and start me all over again. Really couldn't take that. Good thing I like it around here and have awesome friends who support me when I let me and sometimes even when I don't. As much as I try to handle all this on my own, I know I can't. God + Friends = Awesome Support Network. Is just a matter of my being able to let go of the emotional side and share; I truly do hate being a burden and I can't even get rid of that feeling when I directly talk about this stuff to anyone. For whatever reason God gave me this to bear on my own and sharing seems like I'm trying to divvy it out and folks already got enough issues to deal with without worry about me. The conditions themselves aren't going to kill me; just makes you want to not exist every now and then when they're at their worst. As of right now I can still move and breathe so we're far from our worst.. least for now.
Appreciate the digital world letting me ramble. As I said in the beginning, that is what this is for. So that I only burden those who choose to take the time to read this and listen to me ramble. Venting all this here helps me not bombard everyone elsewhere who could care less about what's going on with me medically. Not the kinds of things you normally want to share with the world anyways I suppose. I for the few days a year there's absolutely no pain, I absolutely must learn to enjoy them to the fullest. Go swimming or something... play lots of bass on RockBand and hopefully have lots of smiles and laughs and good stories to tell and maybe some more to make. It's easy to get lost in the dark void of pain. Must really try to keep a firm grip on the rope that leads out and take advantage of being let out of my hole when I can. There's so much I've missed out on since I was 18 and even more since Feb 2009. Never know how long we've got here so I guess I need to start making the most of it once we get this meds thing figured out again.
Hope all of you are resting soundly, my friends, and thank you for being awesome and really hope the world treats you well and allows you to live life to the fullest, as they say.
*hugs*
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