Saturday, March 31, 2012

The Boyfriend Speaks!

I always talk about how wonderful my boyfriend is and how very lucky I am to have him in my life. It's true. I asked some of y'all to send me some questions via my facebook page and some wiseguy wanted me to ask him the first three questions. Apparently he didn't prepare amazing answers to them. But I've gotten a lot of good ideas from you guys, and I had a lot of questions I wanted to ask him too. I get really shy and emotional around some things though, so they're never things I would have normally asked.

But like I had to remind him during some of his answers, this is a safe space!

I hope you guys enjoy reading my interview with my honey as much as I enjoyed asking him some of these questions.


K: I am awesome. Thoughts?

T: I agree! There is a lot about you that I admire.

K: Ok, so then if I’m so awesome, where is my spa day? Is it because you don’t make more money? Does that bother you?

T: Wait, what?

K: Why don’t you make more money so I can have a spa day?

T: Cause I’m lazy.

K: Ok, fine. I’ll ask normal questions. Pssssh.

I know it’s been a long time, but can you remember your initial reaction when I told you about my illness?

T: You brought it up really early on.

K: Yeah, it might have even been on our first date.

T: Maybe. You were pretty open about having it. I kind of just thought of it as another fact you learn about someone else. It was interesting, but I don’t recall any weird reaction. I just thought it was one of those things.

K: We used to be a lot more physically active in the earlier years of our relationship. Are there any things that we don’t do as much that you miss?

T: it seems more like we did those things because it beat hanging out in a dorm room and we didn’t have to work 40 hours a week. A few weeks ago, we went hiking and today we walked State Street, so I think we’re plenty active.

K: When we first began dating, you wanted to learn more about my illness but I was really afraid to share some of it with you. How difficult was it when I didn’t share?

T: It doesn’t really stand out in my mind. It probably bugged me a little bit, but more from a standpoint of I didn't know what things were okay to do sometimes. I figured you would share more when you were ready.

K: Part of how I was finally able to share my illness with you was through my blog, which you encouraged me to do. Does it still help today with communication on how I am feeling?

T: I think you communicate more directly with me now than in the past. I think you should blog more often though.

K: I sometimes share a lot of information on our personal lives on here. Does it ever bother you?

T: No. Like I said I think you should blog more. You share personal stuff, but it’s pretty nonspecific. If someone really wanted to, they could easily figure out who I was. But I don’t think that’s a big deal.

K: We have really begun to do a lot in the past year with the Arthritis Foundation and other organizations, like IAAM, to raise awareness about the many different types of arthritis. Do you feel more involved with my illness because of it?

T: It’s fun to do the walks and do fundraising things. I like feeling like I’m helping. I mean, I wonder sometimes how much it helps but I like feeling like I do something. I like that you are so involved with organizations and WAAD. I think it would be really neat if you could turn it into a career... You know, if you wanted to.

K: How do you think the dynamics of our relationship have changed as my illness has progressed?

T: I dunno how much things have changed. I sometimes wish we did more, even cleaning and such around the house. But then I don’t do it either. Sometimes I forget too, because of our schedules, that you work 8 hours a day. I think that if you weren't sick, you'd get frustrated with me not cleaning and such as much too.

K: What are the three things you hate the most about my illness?

T: Hmm. Sometimes it takes a while to get going on days. Like Saturdays [our shared day off], I want to go do things sometimes more quickly than we can. I don’t like that it makes you stiff and that you hurt all the time. I wish that I could fix that. I dunno, it all just comes down to I wish that you weren’t sick and didn’t hurt. I wish that you could be like me and lay around out of laziness and not because you’re being forced to because of your illness.

K: What is it like for you emotionally when I’m having a string of bad days or a bad flare up?

T: Sometimes it’s vaguely annoying because it seems like my sad days seem to coincide with your bad days. Sometimes it feels difficult because I want to be able to be whiny and have my own bad days, and I feel bad saying it because it is so, so much for you… but sometimes when you have bad days, you get really good about sharing things and I feel like it’s so much going on that it gets annoying. I like that you share though. I feel like a jerk saying that. Don’t be mad at me.

This interview just got real, yo’

K: Do you worry about little things hurting me? Are there ever times when you are afraid to do something with me because you’re worried it will hurt?

T: I’m always conscious when we are walking to walk slower, because I walk really fast [he does!] and I know that walking faster like that probably hurts you. There are other times where I want to go do things, like go hiking, and I mention it but then I realize that it’s probably not the best idea that day.

K: I could probably be more direct about things like that too though. When you say hiking would be fun and I say maybe, I should be saying more directly that it’s probably not a good idea that day.

T: Maybe ;)

K: You are always so, so good at helping me when I’m not doing well. Do you ever get tired of it?

T: Yeah. Some days it feels like I have to clean up after you, but then I realize that you’re probably not feeling well. I generally like helping. If you are feeling crummy and needed me to get something, I would do it but you never do that. I feel like you should be more open about that.

K: Do my limitations ever frustrate you?

T: Sometimes, like if we go hiking or something. But I always overestimate my own physical ability too. I wish we could do things more, but you don’t have too many limitations.

K: What do you think are the most difficult aspects for a spouse or loved one of someone with RA to understand and deal with?

T: I think it’s just tough to realize what being in pain all the time means. I don’t have any concept, and we’ve been together for four and a half years. And just knowing that you can’t do everything. Yeah, it would be fun to play tennis and things like that, but it’s not worth you being in pain. There are other fun things we can do though. I think it can be a good thing. You can find other fun common interest things to do… like seeing giraffes! Or morning sex on the weekends.

That might fall into the too much personal information category. Oh well.

K: Do you have any advice for fellow couples dealing with autoimmune arthritis?

T: I would advise the person with the illness to just be open. If the person really wants to be with you, they want to know that stuff anyway. If they don’t, then they’re not worth being with anyway. I guess that advice doesn’t really apply to people already together where one develops an illness. 

I would advise the significant other to be open and understanding – realize that any sacrifices you have to make are small compared to actually being sick. Your sick loved one doesn’t want to be sick and limited. Just be nice and do the things you’re supposed to do, whether that person is sick or not. I know that’s a tall order for some people though.
__

I'm really glad that I was able to interview him, because I think it really helps me understand the things that he goes through more too. I think sometimes I make myself feel bad about being sick and bad that he sometimes has to do more, and I probably do it more often than I need to. And we all need to have our days to whine. I'll still share what is going on with me, but maybe I'll tone it down once in a while so he can have a whiny day :)

I think it would be a really cool project for all of you coupled people to interview each other with some of these questions. It can be sometimes surprising what you find, and it might just help you guys grow closer.

Friday, March 30, 2012

Health Activist Writer's Month Challenge 2012

Here's your mission if you choose to accept it:

Read a lot more of my blog. 

No, seriously.

The month of April is the HAWMC for this year for WEGO Health. That means that for every single day in the month of April, you will read at least one post from me every day!

Well, okay, you don't have to read them every day. But I have to post them every day. If you're a blogger, you can still join at the link above! All the cool people are doing it ;)

This blog post will self-destruct in... Wait, that's not a Blogger feature?

Dangit.

Side note: I'm forgoing one of the prompts, meant for Sunday 4/1, to post an interview with author Carla Jones!!!!!!! Super excited!

Tuesday, March 20, 2012

Mmmm breakfast

So delicious.

I doubled up on my steroids since my humira is now 2 days late because of a stupid mix-up between my doc's office and Abbott. And I added some supplements - CoQ10, Zinc Magnesium and Calcium, and a probiotic. 

Hey! Do you want to read something awesome about juvenile arthritis? Or Glee? What about both! Check it out here. I legit got teary eyed at the vision of the adorable Kurt with the giant foam hand saying "Raise your hand against arthritis."

Sunday, March 18, 2012

What does an Autoimmune Arthritis cure look like?

Oftentimes, I find myself wishing I was either better or worse off health wise. Obviously, the clear choice is that I'd like to be better, to be 'normal' but at least if I was worse I could get disability and maybe that would help things. I find a lot of my energy disappears to work, and while my current job is 99% less stressful than my last one, eight hours of work a day is still eight hours. My body hates sitting most of that time in those horrible office chairs, especially with whatever in the world is going on with my spine lately.

I have often said that I feel as though I have an advantage in being chronically ill, having gotten sick at age 5. I can barely remember a time when I could run around and play like a crazy little kid without wiping myself out. Don't get me wrong - I abso-f'ing-lutely hate this disease. If Arthur was real, his death would be so slow and painful and he'd probably end up looking like a Jack the Ripper victim. But I wonder, if I'm around when a cure is developed, how will that change my life?

I've never been normal, in health or anything else. How much of my personality is based on my illness? Is my inability to really blend in a result of the fact that my body stands out?

In any case, my weird philosophical whatevers aside, I asked a question a bit ago on what a cure for AA would look like. I didn't get too many responses, but the ones I got really made me think.

Tiffany, CEO and founder of IAAM (who developed the term 'Autoimmune Arthritis' btw), offered her thoughts: "Realistically speaking a cure would be to put us into remission - so no more symptoms and you just stop wherever you are in damage." She talked about how she misses participating in sports, and how she longs for the day when she can do so without being sent into a horrible and long flare.

Jennifer of The Feeding Edge/Art Apple a Day also shared her thoughts. Despite being in 'medical remission' from her AS, she still deals with flares and fibromyalgia. She very quickly points out that remission in Autoimmune Arthritis is not like it is with other diseases like cancer, where your body is completely free of disease. Like so many of us, she craves for a cure not only out of personal reasons but to benefit the hundreds of thousands of children who develop these diseases: "I'd be thrilled for a cure - in any form it appeared in."

Heather, who commented on the initial blog post for this topic, is facing several surgeries right now as her multiple autoimmune disorders have terribly taken their toll on her body. For her, a cure means that these issues would need to be fixed. There is enough damage already caused that Heather, like so many other chronically ill people, needs a cure that doesn't simply stop the disease, but helps to undo this damage.

Lorna shared not only her thoughts on the subject, but her husband's too. For her, she would be happy to just have the disease stop attacking her. Like me though, she wonders how she would act and is afraid she would party too much. Her husband would love the body she had before the disease back - without the deformed bits and steroid-induced poofiness - but her personality to stay exactly how it is now, with the knowledge she's gained from her experiences.

In all actuality, I completely agree with Tiffany. Cures for diseases don't go back in and fix the permanent damage done. And, to be honest, the thought of being able to run around and play sports or be more active without feeling like death for it... that's all I could ever hope for. To be honest, I don't know how different I would be then... But I know that the pains with this disease are the worst. I could handle the damage, because shoot, athletes deal with them all the time. But the ongoing pain, the flares, and the fatigue are just too much to handle.

On the other hand though, I don't truly know the extent of my damage myself. And wouldn't it be wonderful to chew some ice and be normal? I may have mentioned this in my initial post on the subject, but as my disease began to get worse, my boyfriend was confident they had made a mistake and that I would be fine. I just had some weird disease that would be cured by chewing ice everyday :)

But, damn, like many of the people, I'd just be happy with something that eliminates the bulk of this damn disease from my life. Thanks everyone for your responses. It really is interesting to look at the range of responses here.

___

In closing here, I'd just like to reach out to another person who spoke on this issue, but wished to remain anonymous. He or she said simply said that s/he never thought s/he "could be this sad and feel so helpless and worthless this much in my entire life... but happy to be alive for my kids."

It is really hard to handle these diseases. We often feel like we are not in control of anything in our lives. Sometimes, the only thing we feel we are in control of - and that's debatable even at times - is whether we live or die.

I recently went through some of the toughest days I've ever had with my Still's and what I think is fibromyalgia trying to pop up too. Last Monday, I was crying at work. I was in so much pain. I could barely see straight and my breathing was labored. My hands were freezing up, hurting so bad they were shaking. On top of that, whatever the fuck (sorry!) is going on with my back is getting worse, and has migrated from my lower back up to the cervical spine, neck, and also is causing intense headaches. And I get all of that lovely shit (again, sorry!) on top of my normal lower body joint pain. For a few minutes, I thought of ways I could somehow hurt myself more to get relief. Nothing too horrible, you know, just maybe crash the car on the way home... which, with my hands, could have been a possibility anyway right? Then maybe I could get real meds to treat my pain - or heck, maybe I'd end up, you know, not having anymore pain... Shortly before I left work, the pain broke along with my fever. My rash subsided. I was so grateful, but so afraid that it would start again. Crashing the car was still a thought in my mind.

That damn cliche about how it's always darkest before dawn? Sometimes, it's true. It's so hard to make it through. Thankfully, I have so many friends now via social media who understand what this disease forces me to go through. If you're dealing with these kinds of issues, please reach out to someone - even if it's just lowly ol' me :)  So many of us go through time periods like this, where we are afraid to tell other people. I didn't even talk to the boyfriend about this, and we talk about everything. I was too ashamed to admit it to him, and honestly I don't know what I'll say if he brings it up after reading this other than just break down. But I can talk to others about similar issues, and it really helps.

If you have the means to, it probably wouldn't be terrible to talk to a professional... but I hate them. I have trust issues and talking to strangers, for me, just doesn't work. Every time I've tried, it just gets awkward and I can't deal. And that's why I write, so y'all get to be my therapists. So I guess a thank you is in order? :)

Thursday, March 15, 2012

OH MY GOD YOU GUYS WHAT THE HECK?

This is totally unrelated to me blogging at all. I'm just really excited and need to share it.

The boyfriend and I both got called back for JEOPARDY, BITCHES.

"Partners in Healing" - A Review

As you may know, for the next little while we will be focusing on people in our support group, the unsung heroes of the chronically ill. In keeping with this theme, I picked up a book recently designed to help our loved ones handle the pressures of the effects of illness in their lives and how they can help us the most.

If you have followed my writings and crazy rantings for a while, you might remember that I kind of have a thing for Buddhism. And I've also discussed a few other Shambala publications in the past, mostly relating to handling abuse and negative memories. Honestly, though, I picked this book based on description. I totally didn't even know it was a Shambala book until I finished it.

Dr. Collinge has a background in alternative medicines, which I also didn't know before starting the book. While it's not a horrible thing, this explained the few chapters in the book I didn't much care for - on things like Reiki and other healing exercises. I'm not completely discounting those therapies. There are some people that are helped by them. However, from what I have investigated on my own, they are not as viable as others can be. This includes talking with Reiki healers who tried very hard to get me involved each time we met, almost telemarketer-like. It was off-putting to say the least.

Some of my favorite sections of the book include the bits on massage and snuggling. I happen to be a very touchy person, and snuggling has a very calming and pain relieving effect on me. If it's only a finger touch mine, that's enough to be helpful if the intention is there.

Speaking of intention, another section I enjoyed was chapter 28 on tonglen mediation. If you don't know tonglen, please click here and let one of my favorite authors, Pema Chodron, explain in more detail! Short version: essentially, it's a meditation practice in which you breathe in the bad and breathe out the good. It's sounds counter-intuitive, I know, but it is also a kind of healing energy. You breathe in the pains, worries, and sorrows of a specific person (or region or the world - that's a little much though!), and you breathe out good thoughts, hopes, and dreams for him or her (or them!). It's all about the intention with with you practice tonglen. Collinge notes that the idea of taking on the pain of the suffering person is a crazy overwhelming thought. Again, it's one of those things that might not work for everyone. But I can tell you from my experience that, when someone I love is hurting, this practice really helps me slow down and realize that a) their pain is not related to me, and b) I can help the most by just being there to listen and absorb and support.

One of the things I liked the most about the book is how it touches on the importance of taking care of yourself. In a caregiver/loved one role, it is really easy to ignore your issues because sometimes it seems like the other person has more pertinent issues. You don't want to seem like you're trying to complain or get into a competition on who feels worse. But remember, you cannot take care of another if you don't take care of yourself. If you spend all your time helping others, but neglect to eat right, you're going to suffer a heart attack. And then what happens to the people you help?

Section 34, to me, is the most important section of the entire book. It talks about communication and choosing the right words when you speak. I think a lot of issues in relationships where one (or both) have a chronic illness stem from communication issues. One party is afraid to speak up, or another doesn't know how to express frustrations.

One of the most important things in this section isn't even a recommendation, but a list of results from a study on relationships and illness. Patients in the study seemed to respond best when their partners shared their own feelings and concerns, used humor to relieve tension, and be present in that moment and those feelings without jumping ahead to how to fix everything. Other studies point out that women with breast cancer say that they feel more connected with their partners when they express their feelings on the patient's illness, and that they do better with partners who can empathize with them and could make it through emotional conversations. Less communication between patients and their partners surrounding illness seems to be destructive in a relationship as well.

The section goes on to talk about the bonds that are formed when those with illnesses disclose their feelings, essentially bearing what may be their most vulnerable and intimate parts/thoughts to partners. That's probably part of why the thought of doing so is so intimidating and scary. Being a partner is about sticking through the good and the bad - if a partner doesn't know all of the bad, don't expect him or her to really stick around for the good. To be honest, sometimes I wonder if my boyfriend and I would still be together if I hadn't started this blog and begun to show the weakest, most vulnerable parts of myself. It's an ongoing process, obviously, and can't be done overnight. There are still parts of me that I have a hard time sharing, and the same goes for him. But we work on it, and that makes it work.

In some of the following sections, Collinge makes reference to the importance of thinking positive along with your patient/partner. In doing that, it helps to appreciate the things you can do together and with each other rather than what you miss doing. If I dwell on the fact that I can't run anymore, my pain seems to be worse. It's just simple as that.

The rest of the book talks about ways to improve relationships centered around illness, from enjoying some good tea to running a spa like bath for your sick chick *hint hint to my handsomest blog reader*

One of the interesting things I'd like to touch on is on sleeping... separately. The boyfriend and I live in a two bedroom apartment, which sometimes gets me crap from my friends who think it's weird. Sometimes it's hard for me to handle too, because I SO much love to snuggle and it really helps me feel comforted, especially at night. Sometimes (like the night I'm writing this for instance!) it's a good thing, because my energy at someone's bed time is a little too high for sleeping. I also have a hard time hearing my alarm in the morning and then hitting snooze A LOT, which I know really can be extremely annoying... It is from the other room anyway I'm sure :)  Collinge actually recommends sleeping alone. It can help, especially illnesses like fibromyalgia that are heavily affected by loss of REM sleep. And it doesn't really hurt that it limits my exposure to someone having a cold or something like that, should that happen.

Overall, I think that much of the information in this book is going to be so so helpful for partners and loved ones of ill people. I might not agree with everything in it, but even as a partner to a non-ill person (he's so much better than normal by any means :) ) I found the tips helpful and easy to relate to, just for everyday life. The biggest things to take away from the book are that communication is even more important in illness-related relationships, to try to stay positive, and that a care giver/loved one HAS HAS HAS to be able to focus on their own health as well. If you're not there to support me on my hard journey, who is going to do it you know? Sometimes I can be distant - we all can - but I really do need you around and I so much appreciate everything that you do to help me, more than you'll ever know.

If you're interested in the book, use the info below to find it!

"Partners in Healing: Simple Ways to Offer Support, Comfort, and Care to a Loved One Facing Illness" by William Collinge, PhD. Published in 2008 by Shambala Publications, Inc. ISBN: 978-1-59030-415-0

Wednesday, March 7, 2012

IAAM and Awesomeness

For those of you who don't follow me on social media, you might not know something awesome! I've begun the track to volunteering with IAAM, or the International Autoimmune Arthritis Movement. Right now, IAAM has been working on creating a number of awesome posters to raise awareness for the first annual WAAD, or World AA Day!

Here's mine!



Yay, poofy sumo face!

I actually really had reservations about using my poofy face picture. I HATE looking like that, and it's happened several times now. Once, as a young girl, it was so bad I couldn't see out of one eye. And my sister lovingly called it 'sumo face' - and the name stuck. Thanks Kelsey ;)

If you haven't heard about IAAM, please check them out! Volunteering with IAAM is an amazing feeling, and I LOVE how I've been able to connect with so many people so honestly about the issues facing those of us with a form of AA.

Tuesday, March 6, 2012

An Idea!

The boyfriend had a wonderful idea for a question to share!

I know! Pretty cool, huh?

He was thinking about a cure for autoimmune arthritis and what it would look like. What would we, as people dealing with these diseases, be okay with? Would it be a medication that stops any further damage, but halts you where you are? Would it have to reverse all damage? What if you still had tough days, but fewer of them?

In a perfect world, obviously, we all want to be completely 'normal' - but what would we accept?

I know I'm biased, but I thought this was such a great idea that before I wrote about it I would love to hear what others have to say too!

So! Please send me your ideas! I would love to share them, kind of blog carnival-y. If you have a blog, I'd love for you to post there and then send me a link to that entry so that I can showcase it in my response! If you don't have a blog, feel free to start one! Oooor just email me your thoughts ;)

Oooh, but just one thing - I'd love to post this in a timely-ish fashion soooo we should set a deadline! How about I need submissions by next Sunday, March 18th, by midnight pacific whatever (savings?) time.

Thanks in advance for your input! I look forward to reading your ideas!

Monday, March 5, 2012

So lame

Welcome to a day with a huge number on the pain scale.

Felt sick last night. Had to do Humira and that didn't help.

Today, could barely walk in the morning and rocked my cane at work, which was not easy. Hands hurt like crazy. Thinking it's fibro and will keep track. Now ankles are hurting. Right now, at an 8 on the pain scale.

Fucking sucks.

Sunday, March 4, 2012

Male (mah-leh)

Noun, Italian, meaning evil or ailment.

I love that it means both things. Seriously.

During the JAM walk this weekend, I realized how horrible JA is. I mean, obviously, I always knew growing up that these diseases sucked. Hell, I'll even definitely share that during my early teens, I didn't want to be alive because of it. I hated that I was always in pain, that I never felt good, that I could be as physical as other young people. I was dealing with other evil things too though, including issues stemming from sexual abuse.

To be honest, I've always been a big talker. I talk about what I'm going to do, or think about what I'm going to do, but I don't follow through with a lot of things I do. Being depressed and on the verge of hurting myself, well, sometimes I wonder if that was my brain going through the same.

The point is, though, that I saw little babies, children younger than when I was diagnosed, with orange shirts on (at JAM, you get an orange shirt if you have arthritis and a white one if you don't). I thought about them feeling the same pains I have. I thought about them feeling as hopeless as I do sometimes. It was really overwhelming.

Something that can attack children, that can force them into wheelchairs and onto crutches for years, that can blind and cripple them before they even really have the chance to experience life - that, to me, is what evil is.

Odio questo male, con tutto ciĆ² che sono

Friday, March 2, 2012

We're Jammin'

And I hope you like jammin' too!

If by jammin' you actually mean JAMming for a cure for juvenile arthritis!

This weekend, I'll be pretty much AWOL from the blog... which I guess isn't too different from normal. But this time it's important! Really!

The boyfriend and I will be in Minneapolis at the Mall of America shopping... err... participating in the arthritis walk specifically for raising awareness and money for children affected by any form of juvenile arthritis (JA).

In fact, as this is being posted we should be on the road for the wonderful 5 hour drive from Madison! We are taking a break half way through and switching the driving.

I'm working on paying off debts, so um, we didn't really donate. I'm down to only about $600 from about $5000 on credit cards since January (thank you extra student loan money and tax return!). But I figure it'll be fun to head out there. And maybe I can rock my Dr. House cane while I'm at it! Plus it's been 2 months now since our last mini vacation :)

Soooo if you're going to be/in the Minneapolis area, come check out the march! You can register the day of! And come hang out with meeee!

Doooo ittttttt *peer pressure*