Why I Write About my Health

Posted on by Grayson

“Reflect on why you write about your health for 15-20 minutes without stopping.”

Oooooh my.

I started writing about my health as a way to tell the boyfriend what I was going through and the tough things I might go through in the future. I used it as a tool to communicate with him, to say the things through writing that I couldn’t bring myself to say to his face out of fear of rejection.

Then, I did it because it was nice to be able to get out my feelings and my anger especially, holy cow.

But then something amazing happened. I began to get emails and comments from others with rheumatic diseases. People not in my immediate family and circle of friends were actually reading my blog. I felt so amazing, knowing that I was being able to help people.

It just grew and grew. I began to get more emails from people, comments, likes on facebook. As I write this (like 2 weeks early I might add), I exchanged emails with a twitter friend today on a piece I wrote. Her response was tear-jerking – because I had tear-jerked her just with my story and a mirror of how other children with juvenile arthritis go through life.

For now, my main focus is to raise awareness about these diseases – and especially the fact that children suffer these horrible, horrible pains and complications. Arthritis is not osteoarthritis by default – it instead consists of many, many diseases. I’m tired of people looking at me like I’m a fraud when I park in my handicapped space (whatever old guy, keep walking!). I’m tired of not being able to get people to give up their seats on the bus for me. It’s time that people understand that these diseases happen, they’re not pretty, and they can maim and disable very very quickly.

I write so that the children I know with JA have someone to talk to, so that they don’t have to go through staring contests with cranky old people. I want people to know, to understand, and to help. One day, we can get a cure, but we’ve got to fight for it.

Superpower Day

Posted on by Grayson

“If you had a superpower – what would it be? How would you use it?”

Dude. I don’t know.

It’d be cool to fly. I’d love to visit family without distance being an issue. But then, think of what that would do to my already aching back!

I’d love to use telekinesis. When I can’t move, I can move shit with my mind. But I would get lazy and use it when I don’t need to, like my handicapped placard.

Talking to animals would just be friggin’ amazing.

Ultimately, though, I’d have to say that I’d love the power to heal. I hate being sick. It has definitely made me what I am today, and I’m grateful for that at least, but I’m SOOO over it. I’m sure others are too.

And who the hell would turn down the ability to go heal all the little kids with illnesses? Seriously.

Quotation Inspiration

Posted on by Grayson

“Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.”


“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”
-Lao Tzu

My whole life, I have been very lucky to have a huge support system. My huge family is crazy, and some of them often ignored my side of the family for things. I’m not bitter about it – we did it too. Ours was a family that was centered around chronic illness, with my great grandmother having been the uniter having suffered with MS for much of her life. When she died, the big together family split off even more. But still, some of us keep (kinda) in touch.

My mom saved my life, literally, by refusing to believe my disease was leukemia, refusing radiation/chemo and biopsies. She fought tirelessly to find the real disease, to document my symptoms, and to deal with my father (read: douche; sperm donor) deciding that maybe he did want custody of me if he’d have to pay support. As my sister fell ill as well, she and I fought often as girls tend to do. But our illnesses have brought us even closer.

As a child with a chronic illness, other kids felt bad for me but they didn’t understand. They were my friends nonetheless. In middle and high school, I found my niche – the best group of friends I’ve ever had. Together, we suffered through bullying, thesis papers, projects period, and International Baccalaureate exams. Some of us got full diplomas, graduated with honors, and became valedictorians (North Scholars) together.

And in college, I met the best friends I’ve ever had – my old roommate Katy and my boyfriend of over four years. I can share anything with the two of them. Katy and I don’t get to spend as much time together as we’d like, because our schedules don’t match up well sometimes. But when we do, it’s wonderful. She intently listens, and we can both gripe about things and share our worries.

But my boyfriend is, and has been for so long now, the biggest help in my life. When he looks at me, he doesn’t see illness, a collection of swollen joints and misfiring nerves. He sees me for me – or maybe sometimes more than I am. I am not gorgeous when I wake up… usually. He is so helpful and most of the time really really good about not judging me… and when he does get frustrated, he keeps much of it to himself. So he’s pretty cool I think.

This quote is mainly directed at him, more than the others I’ve listed. I was so afraid to start medications and to get the medical attention I needed. He encouraged me. With his love, I felt strong enough to go to the doctor. And because of the courage I have – and the dreams I have for the future – I carried out my plans and began walking on the path I am on today. I am so, so very grateful for everything he does for me, and helps me to do.

Interview with Carla Jones, Author of Death by Rheumatoid Arthritis

Posted on by Grayson

You guys, I am soooo excited to share this with you! A few weeks ago, I noticed that one Carla Jones was following me on Twitter. The name seemed really, really familiar. Upon taking a closer look at my Kindle App on my phone, I quickly realized why.

Carla Jones wrote an e-book about her mother’s battle with rheumatoid arthritis and how, sadly, complications from the disease caused her mother’s death. Carla is so, so very brave for writing about this, and is using her mother’s story to promote better understanding of the severity of RA.

As a loved one of someone who suffered with and died due to RA, I thought that she would be able to offer a unique perspective on my recent focus on our support systems. I am so, so thankful that she agreed to answer my questions.

So without further ado, enjoy this awesome interview!

In the introduction to your book, you said that you would want to know complications associated with RA if you were diagnosed. Do you think that organizations should be making this a goal of raising awareness?

Most definitely.  I think it’s great that many arthritis support groups and organizations have a positive approach to a life dominating disease, such as RA.  However, [I] strongly believe that patients need to get a well rounded education, on the multiple complications that can accompany rheumatoid arthritis.
Or, to put it another way, do you feel that sometimes organizations put too much of an emphasis on the positive, avoiding the negatives of RA and like diseases?

Yes, and I’m not alone.   I’ve heard this comment from one of leading spokesperson for RA, Kelly Young, founder of The Rheumatoid Patient Foundation, as well as an employee from a well known arthritis organization.   Patients need to have a balanced education on positive interventions, yet need to understand the negative attributes associated with RA.  The online arthritis community of patients are the true forerunners in this arena.  I know that as we work together, that eventually, people will learn how to better take preventative measures to avoid serious complications from RA.

Your mother seemed to be a very positive person. Were there ever any moments where you could see a change in that due to her illness?

Her continual optimism was forged by her faith as a Christian.   Seeing past the physical to the spiritual core of every situation enabled my Mother to experience hope, in a person; not a circumstance.  This spiritual vantage point allowed her to keep going mentally and emotionally.  Alongside any chronic illness, depression and anxiety are present.  Thankfully, she made a daily choice not to allow these traits, to dominate her attitude. 

Were there ever moments where you had to stop being a dear daughter and instead use tough love regarding your mother’s illness and treatments? If so, how difficult was that for you?
Yes, my sister and I needed to be hard-line advocates on a consistent basis, in order to aid my Mother at every turn of her treatment.  Ultimately she made all the choices about her care, but we did our best as a team to investigate all treatment options beforehand.  The biggest challenge our family faced was getting her a proper diagnosis and regulating her excruciating pain. Due to the advancement of her disease, her pain was difficult to get under control.   Frequently my sister and I would question the doctors about switching or upping her pain-killers.  This was a terrible, ongoing problem.  As she lay there, I remember literally seeing the tormented waves of pain wash over her face, in spite of the fact that she was pumped up with high doses of narcotics. It was a terrifying and helpless feeling.  One E.R. nurse told us that she had never seen anyone in the E.R. taking so many narcotics and functioning as normally as my Mom.  
Were there ever moments where you felt taxed and worn down by caring for your mother? What are some ways that you handled the stress and pressure that go along often with being a caregiver?
Thankfully, she had help from many nurses and nurses aids so I was not alone, for the last two years of her life. There were periods of feeling completely overwhelmed with taking care of my Mother but, I knew she needed me and I was going to be there for her. 
Prayer helped me through this long dark period, for it is the number one way I handle stress in my life.  Conversing with God and reading the Bible put my circumstances into a healthy perspective.  A verse that aided in my stress:  Romans 8:28 – And we know that in all things God works for the good of those who love him, who have been called according to his purpose.  This one simple verse was a huge comfort for me.  I also distinctively recall sitting on my couch and just thinking the words, “Trust me.”  Sounds far-out and bizarre to some, but I know this was God’s way of redirecting my thoughts back to Him. Talking things out with my family and friends helped immensely.  Where there is understanding, there is validation, after validation, peace follows.
I have seen you list several medications in your book, but no biologics. Was your mother ever on those? If not, do you ever think things might have turned out better if she had been?

She was on Enbrel, Humira and Remicade. Unfortunately, they did little or nothing to slow her RA.

Were there ever days where you considered alternative treatments, like massage and healing touch? Why or why not?

I asked her if she would consider massage therapy. Since her frame was incredible frail and brittle, the thought of anyone rubbing her skin, turned her off.  She was concerned that a therapist might accidentally break one of her bones. 

If you could offer any advice to people in a caregiver/loved one situation, what would you say?

I would tell them to surround themselves with empathetic, positive people.  This may mean family members and or a support group.   Take care of yourself!  Don’t feel like your loved one solely depends on you to do everything for them.  Learn to take time out daily for relaxation to get your mind on something you enjoy.

Your mother became pretty religious during the course of her life. What kinds of effects do you think her faith had on her illness?

Her faith was her life-blood and sustained her.  God transformed and was the center of all areas of her life.  Studies show that those with faith in God fare better than those that do not.  This could be mentally and or physically depending on the person.   

Was it difficult to write about your mother’s passing, or was it more therapeutic?

It was a combination of both.  Initially, I just started journaling about my relationship with her and of how I had missed her.  As I have said before, she was my Mom but honestly was the best friend I ever had.   Before she died, I read her a “Thank You” letter I composed, for all the many things she had contributed to my life. Afterwards I wrote a short note of the many ways she impacted my life with her faith and love, at her funeral.  Then I started getting mad.  Mad that she was not able to be saved and very well could have been.  I thought there must be others people that have died from complications due to RA, even though I had never heard of such a thing. She can’t be the only one.  I immediately felt the need to inform others of the reality of this agonizing death.  At this point I began researching all that I could on the topic.  It definitely was an emotionally draining process, having to relive the grief throughout the course of writing the book.
For those who haven’t read the book, your parents separated quite some time before her illness set in. However, your father seemed to be around a lot during times when you both must have needed him the most. How did he handle the situation? 

Yes, he was very supportive and understanding.  The two were the best of friends.  He was in constant communication with the three of us.  My Dad was his usual positive self and always had helpful advice for my Mother through every stage of her decline.  Her death was extremely difficult for him.

Do you have any advice for newly diagnosed people and their loved ones?

Get informed:  Seek out well rounded education on RA. Don’t limit yourself to whatever information your doctor is able to share with you.  He or she has a limited amount of time and knowledge. Read up on RA and ask specific questions suitable to your symptoms.  Get support: Online support groups for RA are wonderful!! I’ve had nothing but positive feedback from those involved in on the social media sites.  Getting empathy is so important when you are struggling with any difficult situation and I’ve met such caring people from this source including you! [YAY!] I find your blog information to be helpful, informative and personal.  I respect and applaud you for raising awareness to Still’s disease and RA.   Another person to connect online with would be Kelly Young, aka “RA Warrior”.  Her blog contains an array of helpful information for those fighting the disease.  She’s a dynamic, educated woman with thousands of followers, including doctors.   I met her on a trip to Florida last year and I now have the extreme privilege of calling her my friend. 

In closing, I’d like to note that you are donating all your proceeds from the sales of your book to the Arthritis Foundation. I think that’s pretty kickass, pardon my French 🙂

Thank you kindly for the compliment, Kirsten. It’s the least I can to do contribute to those fighting this precarious disease.  My hopes are that one day soon, a cure is found and I believe it will happen in our lifetime.  It was an honor being a guest on your blog. You are an inspirational support for many.

Thank you SO much Carla for agreeing to do this interview, and for your kind words 🙂  It has truly been an honor to be able to learn more about your relationship with your mother, and how you handled this very tough time in your life! I hope that your mother’s story continues to touch the lives of others as it has touched mine.

The Boyfriend Speaks!

Posted on by Grayson

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.

Health Activist Writer’s Month Challenge 2012

Posted on by Grayson

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!

What does an Autoimmune Arthritis cure look like?

Posted on by Grayson

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? 🙂

“Partners in Healing” – A Review

Posted on by Grayson

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

IAAM and Awesomeness

Posted on by Grayson

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.

An Idea!

Posted on by Grayson

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!