World Lupus Day... Celebrate???

Today is May 10, 2012 World Lupus Day. I wish I could celebrate, I wish it was a day that meant good things instead of painful things. Eventually, this day will be a real celebration but until then I am afraid to even get excited about feeling a little bit better. Most of the time there are small reminders that Lupus is looming right around the corner, always. Then there are some days where it feels as if Lupus never even existed in my world. It feels as if I've gone back to the years before I got so terribly sick, before the days I couldn't even get out of bed, before the days when "I'm sorry I can't, I'm not feeling well" became a disappointing part of my conversations with almost everyone. There are days when I can walk around the neighborhood with my 5 year-old son and he gets tired before I do. There are nights that to be honest with you I barely remember because I was out with my husband doing the things that normal young couples do! But it seems like for every one day that I get to forget about having Lupus, I am charged with 2 or 3 days of being painfully reminded with every breath I take. Medication, ice packs, eye pillows, teas, pain patches, the T.E.N.S. unit and more are all things that I have in my "bag of tricks" to use during a hard "lupus day". That's what I say when I feel like lupus is just kicking my ass to any degree. Take the rainy week we had a few weeks ago. I was not expecting to be hit so hard when the barometric pressure changed as I have been doing slightly better than normal lupus-wise the last few months. But even as the barometer just began to move I could feel it in my bones. I woke up the next day and literally couldn't move. Lupus-1 Heather-0. It was terrible. I had been at a wedding the night before so I thought maybe I was just a little stiff from dancing in 5 inch heels. The next day when the weather proceeded to suck and so did my state of being, I knew that the dancing and the heels had little to deal with what was happening to me. I began collecting my lupus combating arsenal, that I mentioned above, and settled myself on the couch for however long it would take for the inflammation, joint pain and fatigue to leave me the hell alone. It took 5 days. I am not in any way exaggerating, I woke up on Thursday and didn't feel like my whole body was going to fall off and knew that lupus had loosened her grip on me. At least for the time being. Lupus-5 Heather-1.


In October 2011 I started infusions of the new Lupus medication Benlysta. After every infusion I feel a little bit more like my old self. Like I can maybe do things that I used to do! I say maybe because I used to be super athletic and played sports. I'm totally out of shape now so a few other things would have to happen before I could definitively say that I can do everything I used to do. Really the bottom line is that I can do MORE than I could before October, I have less joint pain, I can sleep and I don't need to take as much pain medicine. I think that's why I was so surprised by the full scale attack I received from my immune system a few weeks ago. I had been doing really well, well enough to be able to publicly talk about it and not thing I'm jinxing my progress or the drug's effectiveness. I feel that I need to talk about it and talk about it a lot because I have been hearing atrocious things about this medication and it is all from people that heard from someone who heard about someone. Listen, I'm on it and I know what's up. This is the score here Benlysta-8 Lupus-1. I give Lupus one point because she's a sneaky bitch and jumped me a couple weeks ago like I told you. I have spoken to a few different people and I get angry when I do because they are just not being properly educated about this medication that by all intents and purposes is working for me. Doctors need to do a better job of making this drug available and that means they need to learn more about it. I'm lucky b/c my rheumatologist is brilliant, some people don't have that. If you are reading this and you have Lupus I encourage you to talk to your doctor about Benlysta as soon as possible. Don't let anyone tell you anything about it unless they are on it, because if they aren't on it they don't know. If you have questions, ask me. If someone you talk to has questions or wants to argue about it tell them to come talk to me. I love a challenge.


One day we will be able to celebrate World Lupus Day in the real sense on the word. But for right now, let's celebrate by educating as many people as we can. We need to make this illness as well known and talked about as AIDS and Breast Cancer and until we do we won't have enough support or enough money to do what needs to be done to find a cure. At least that's how I feel. I am doing whatever I can to raise Lupus awareness, and I am trying to encourage my friends, family and followers on Twitter to do the same. We just have to keep talking about it, writing about it, singing about it. Keep it in the news, in books, on TV shows and put it in movies. Make it so that there's no way our world can ignore it! I am making a film called "What Do You Know About Lupus?" and I hope that will help in some way to get the word out. But until I can say that I have conquered Lupus, that I've kicked her ass instead of her kicking mine... I won't feel right celebrating. It almost feels like a challenge to Lupus and I don't want that kind of Karma. I'll celebrate when the score card shows we beat Lupus once and for all.


Faith, Hope & Love,
HG
(@PurpleTurtles33 on Twitter)

What I really want...

As I look around me it seems that everyone is pregnant but me. I am really happy for the girls I know that are about to know the wonderful joy of motherhood and their digs (significant others) that will soon be fathers. I have a beautiful son and I feel that my life didn't really start until the moment he began to grow inside me. However, I know that I am meant to have more children. My son needs to have siblings and my husband needs the family that I promised him, they both deserve it. The problem is that because of my health issues and the medicine I take it isn't ideal for me to get pregnant right now. I know that I should concentrate on my health but I really want to have another child. It's always been a part of me, that I would have a lot of children. At this point it might not be a lot but at least it could be two or three? I would really like to have our second child by the time Hunter is 6 but it's getting closer and closer to his 5th birthday and my healthbisn't really improving. It's breaking my heart and I can tell it's starting to weigh heavily on my husband. When we started dating we talked at length about the kind of family we wanted and I feel like a failure because I am unable to give that to him right now and I don't know if I ever will be. What if my health never improves? I don't want to have a negative outlook but, what if it stays like this forever? We have talked about adopting but I know my husband wants one more biological child before we adopt. My plan is to have one more baby in the next year and a half. Then 3-4 years from the time that baby is born we will adopt another child out of Foster Care. I really like my plan. I just need to get my health crap out of the way, ugh. Some people have told me that I am selfish and that I should be grateful for what I have. I am grateful, but I know that I have more love inside me than I can give to just one child. I know that I am meant to be the mother of more than one child, that's the only way I can explain it. I'm not sure if anyone would understand unless they were in my shoes.


xo HG

#41

No, it's not the lyrics for the Dave Matthews Band song! I just got back in to my hospital room after my 41st SPINAL TAP!!! Woo Hoo! Yeah buddy! Ok, enough of that creepy celebration. I figured that something big like that should have some sort of crazy joy attached to it. I'm not saying that I'm excited about having had a needle stuck in my back 41 times in 31 months, b/c that would be insane. I'm just saying that I thought it was appropriate to make a big deal about having 41 spinal taps, ok?! Ugh! The doctor said I have to lay on my back for awhile, I'm pretty sure I'm going to try it for awhile and then call someone crying to come and get me! hahaha! I hope that the doctor doesn't change my meds before I decide to leave, that would sadden me greatly.

Yeah, so I have to go home so that I can activate my new American Express card and use it for my Vegas reservations. I found THE BEST deal at the Luxor $915.00 hotel and airfare for two people. Not $915 each, $915 for BOTH! I gotta get home and get right on that now!!! i bet I could get it cheaper if I waited a little bit longer! They are gonna start getting desperate to sell their empty rooms eventually. HOLLER! When trying to book a vacation, I know they say the best deals are with those sites like Kayak, Priceline and Travelocity but that's not always the case. I looked through the Luxor's website and the deal that I got was much cheaper. And I could get tickets to a show included if I wanted to for cheaper than face value. So, instead of just running to these bulk deal websites, try out the hotel websites first and see what they have, write a few hotel/flight combo rates down and then go to the other sites like Priceline and Kayak and compare what you've found. I bet you'll be surprised!

I am going to have to find some cheap clothes to wear in Vegas. I don't have anything Vegas worthy to take with me. We're going for 5 days and I am planning on leaving the room for 4 reasons... The bachelorette party, spa day, gambling/drinking. the wedding/after party and that's it! I might come down to go swimming, but I'm not sure it'll be the right time for that... Laidies you know what I mean by that. My husband and I haven't been on a vacation since we went to Florida with Patch and David, and Jennie met us there. That was so fun! I think Tom and I are going to get tattoos in Vegas. It's our "vacation thing" lol. It's cool, I think. I just don't know what to get. There are 4 that I want to get at this point. Maybe one day I'll draw them and take a picture and post them on here... lol. OK, so I'm going to go lay flat and call my nurse and ask her if she can tell the doctor that I want to go home! Woooooop.


xo. H.

"I'm not sure what you want me to say" He says...

Why is it that men think that they should say what we want them to say instead of the truth? Sometimes those two things are different, how he really feels or what he really thinks and what he may think "you want to hear". That means that if he were to tell you what he thinks you want to hear, he'd be lying. I'm totally not down with that. I don't know about you, but if it comes down to lying to me or telling me the truth, I want the damn truth! For real. Anyway, every time this one girlfriend of mine tells me her husband has said to her "I don't know what you want me to say" again, I get really angry. I get angry because I'm tired of her having to be the bad guy. I can understand someone being intimidated by some body's strong personality or outgoing nature, maybe even loud voice. I just don't see how one can be so scared of some body's reaction to an original thought or comment that they NEVER  feel comfortable having or making them. I think it's sad. I also think that's it's not something this guy just developed while spending time with my friend, as a result of her behavior. I think this is something he has struggled with for years, since his childhood. I think during his most fragile years this guy got negative reactions to his opinions, thoughts or comments from the people he trusted. So, since then he has been bracing himself for negative reactions from everyone. I hesitate to get involved with these kind of things because they usually end up with some one needing therapy. Luckily I think everyone needs therapy and if it were me that's what I'd do. But it's not me, it's my girlfriend and I'm not sure she and her man are fans of therapy and talking it out. This turned out to be a lot shorter than I thought it would be, but I am getting tired and my eyes are closing on their own. Oh well. Goodnighty!


Peace. H

Maybe I'll Explain... a little.

I haven't really got the hang of regularly posting here. One of these days, I'll be able to make it something I do every other day. At this point I'm so turned around health-wise that I can hardly get a good night's sleep! I have Lupus, which I'm not sure I've even said on here before. And it has been taking over my life in the worst way. Right now, I'm even writing from my hospital room at Evanston Hospital. I have a condition called Pseudo Tumor Cerebri which causes my cerebral spinal fluid to build up in my head and cause terrible headaches. At this point I have to go to the hospital every 2-3 months for a spinal tap to relieve the pressure by draining fluid. My health problems can make my life pretty hard to deal with. One of these days I will give some time to fully explaining all of this and what it means for my life. Right now I just want to write some things that people want to read and I think a blog is a good way to do it. Maybe my friend will tell their friends (hint, hint) and tons of people will be reading what I've got to say? I don't know, but it doesn't seem as far fetched as it once did. I love the ides of someone reading something that I've written and asking me questions about it or leaving me comments. I'm excited to start telling more people about this. For a long time I have been scared, and now that the things I've written thus far are far enough in the past I won't be too freaked out to see what people have to say about them. I don't know if that made any sense at all... It did in my head. Hahaha! Well, this is going to be it for now, I'm getting tired and it's time for meds soon. I'm sure I'll get the urge to write about something soon enough. Maybe after I've slept.

xo Peace,

Heather

p.s. - I'd like for anyone who reads this to comment and either ask me a question, or give me an idea of something to write about. I think this might be a good way to really get started. Anything goes on here. It is what it is, after all!

Songs...

Some songs make me happy. Some make me sad. Some make me laugh. A lot of songs make me cry. A song just came on by Jimmy Eat World that took me straight back to the summer after high school graduation. Songs do that to me. Each and every song I've ever played has some sort of meaning to me. They remind me of times, places, people, feelings... anything. When I hear a song it's like I can be exactly where I was when it meant so much to me. Feeling those same feelings about those same people or same things... One person in particular ruined a very large amount of love songs for me when he broke my heart. It's so crazy because I'm somehow wired to put song and feeling together and I always have. I heard the song that my husband decided would be our song while we were still dating when I was at a party recently. I haven't heard it in awhile so it caught me off guard. So off guard in fact that I was stuck to my spot with tears in my eyes while in my mind I saw us in his mom's van holding hands, him singing his heart out to me on the way to Navy Pier. Music consumes my life in a way that nothing else does... There's a Dave Matthews Band song that always makes me feel really safe and calm and it's not even really a slow song. But when I was in high school I was blasting it in my room and turned it down when I noticed my dad was home. He asked me why I did that, told me to turn it back up and said "this is that Dave Matthews Band that you love so much? I like it. Keep it on. And turn it up!". During a time when I felt so angry with him, unsafe, stressed out, and just not good enough a song wiped that all away and I feel that sense of calm whenever I listen to that song. We even listened to it together while I was in labor with my son, and I felt that calm again. It's beautiful that music can tell a story in itself and in my life it can be used to tell my story. If my life were a movie my original soundtrack would be sick!



xo HG

Vegan or no? I need input.

I like to type to music, it's rather therapeutic. I'm listening to Michael Bolton. Yes, I said it! Anyway, I have been having some really serious stomach issues (severe pain, terrible digestion, nausea, vomiting), and food has a lot to do with whether or not I feel good or bad. I have been experimenting a lot with my diet and I'm pretty sure cutting out dairy all together could be really helpful. I have thought about going gluten-free or just dairy free, I have also thought about going vegetarian because meat can be really tough on my digestion, too. But, in the last week or so I have thought about going completely vegan. (Shocking!) I know. The ONLY problem I would have with that would be giving up my beloved... CHEESE! I don't really know how that would work... I know there are cheese substitutes but if you're expecting real cheese you'll be disappointed. So, I dunno. I guess I could start out allowing myself only cheese and then work my way up to taking it away? Help?! If anyone reads this, comment, ask questions, help me out. I wanna help my tummy and I think going vegan could work for me but I am very weary about giving up cheese b/c I really love it a lot... such hard choices in life!!! Should I or shouldn't I?


xo HG












HOLLER.