Category: depression

9 Helpful Gifts for Your Disabled Loved One

Posted on by Grayson

'9 Helpful Gifts for Your Disabled Loved One' written against a wooden background with wrapped presents

While I normally don’t talk about what gifts are helpful for those of us living with disabilities or chronic illnesses, I wanted to break with tradition this year and share some of my favorite gadgets and gizmos.

What changed my mind? Well, I’ve spent the last few weeks taking care of one of my guinea pigs. He’s been dealing with inflammation, pain, and an infection since the week of Halloween. If I could, I would love to get anything and everything that would be able to help him get lower pain levels.

This post contains affiliate links. That means I may monetarily benefit from you purchasing anything on this list. That said, payment for affiliates never comes at your expense. I also would not be promoting anything I didn’t personally appreciate, agree with, or review.

 

Benepod

Benepod is a new type of contrast therapy device which utilizes both hot and cold simultaneously to fight pain. By applying both hot and cold at the same time to a particular point on your body, the Benepod engages your bodies natural healing abilities by introducing a sensation known as the thermal grill illusion.

This device is used with a USB-C cable and must be plugged into a power source during use.

The research for the Benepod started back in the 1990s, meaning the company has been working hard at improving the device design to bring us the best possible one.

You can read my review or snag the Benepod on Amazon.

 

lotion bottle

Fay Farm CBD Rejuvenation Lotion

This lotion contains CBD, essential oils, and even magnesium. It leaves the skin happy and healthy without the greasy feeling a lot of powerful lotions can leave behind.

You can read my review and snag this in 2 oz or 8 oz.

 

 

Tens Unit screen lit up blue

Tech Care Pro TENS Unit

I’ve tried a number of TENS units, and this is the best one I’ve found for my own pain. The unit itself is light, compact, and easy to use. While it doesn’t have a pause button, it is powerful and I’ve never had to use it on medium levels at all.

You can read my review and snag your own on Amazon.

 

Oska Pulse with box, charging cable, and strap

Oska

The Oska Pulse has the cutest name backstory involving helping a koala recover from injury.

The research is there that Oska works – they have a ton of journal articles and research on their site for your perusal. It’s much more a device for preventing pain than treating immediate pain.

You can read my review and SAVE big! For the rest of the year, Oska is on sale for $344 if you use the code NSSD here.

 

Image result for quell

Quell

While my review was on their first edition, the new model is 50% smaller. It’s comparable to the size of a credit card now, making it less obvious that you’re wearing something on your leg. It has more power and more intuitive – it can adjust power on its own depending on your body positioning.

You can read my review. The code HOLIDAY30 saves you $30 off the Quell starter kit for the rest of 2018 here.

 

axon optics box with glasses case

Axon Optics

I would not be alive if it weren’t for my Axon Optics and, no, that’s not an exaggeration.

My migraines were so awful over the last year that I was in a really bad place. My glasses were one the one thing that helped me get through my day. They help filter out some layers of light which have been shown to cause or worsen migraines. While these may not work for everyone, they’re a must – especially for those of us who stare at screens all day.

You can read my review and snag yours on Amazon.

 

selfie of K with short black/brown/purple hair sticking up; they have on a brown paisley Vog mask

Vogmask

Thanks to Kenzie, I got my first Vogmask. As I’ve started to remove allergens from my life due to MCAS, it’s become incredibly important for me to have a mask on me at all times. The Vogmask is compact, easy-to-carry in my bag or pocket, and look snazzy.

You can get yours from Amazon.

 

FaSoLa Portable Weekly 7 Days Pills Organizer Case Round Medicine for Travel Drug Holder

FaSoLa Pill Organizer

I love this round pill organizer! I put all of my emergency medications in them – and, yes, I have seven now. It’s compact enough to fit in my bag, but big enough to hold what I need. Plus, you push the button and the circle advances to the next compartment.

You can snag this on Amazon or at Walgreens.

 

Books

I love reading. While I haven’t read all of these books, they’re all sitting on my bookshelf waiting for when I have more time.

  • Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine | Amazon
  • Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain | Amazon
  • Backbone: Living with Chronic Pain without Turning into One by Karen Duffy | Amazon
  • When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests by Leana Wen & Joshua Kosowsky review | Amazon
  • Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery | Amazon
  • Sick: A Memoir by Porochista Khakpor | Amazon
  • A Disability History of the United States by Kim E Nielsen | Amazon
  • The Ultimate Guide to Sex and Disability by Miriam Kaufman, Cory Silverberg, and Fran Odette | Amazon

Of course, gift cards and quality time are always appreciated, too.

Looking for more chronically helpful gifts? Check out this list I curated on Amazon!

Pick Up Women’s Health This Month!

Posted on by Grayson

If you take a look at the latest copy of Women’s Health magazine, you’ll see a familiar face around page 156.

two photo collage on a black background; 1-cover of the May 2018 issue of Women's Health with Anna Farris; 2-photo of Kirsten leaning on Theron’s shoulder in the magazine

T and I are in the magazine talking about how we make love work with depression and other mental illness. Our blurb is small, but it means so much to me.

Sometimes we forget the impact we have on others just by sharing our own stories. This was a much-needed reminder to keep telling my truth.

I picked up a couple extra copies, so let me know if you want one and I’ll be happy to send it out.

white background with a photo of a pipe in the foreground and pot plants in the background and black text underneath: "Research on Marijuana and Chronic Pain" and "Not Standing Still's Disease"

Research on Marijuana and Chronic Pain

Posted on by Grayson

As a proponent of medical marijuana, one of the recent pieces of research I appreciate the most is around opiate use and pot.

Two different studies found that states that legalized marijuana across the board had lower opiate use rates and fewer opiate prescriptions. A few years ago, another paper found 25% fewer opiate-related deaths in states with medical marijuana. I personally think a lot of the hype against opiates is uncool, but they’ve also almost never worked for me.

With all of this information coming out, it’s a shame that the federal government won’t allow a lot of research directly with pot. The NIH is one of the only places that can participate in this research. Their research position hasn’t been changed in nearly half a century despite many advancements, anecdotal evidence, and changes in popular opinion.

It’s frustrating because we know that cannabis can treat chronic pain effectively for some conditions including multiple sclerosis and RA. With a lack of general pain management, especially with the opiate situation, many patients – like me – are left to experiment.

CBD oil, a non-psychoactive cannabinoid found in hemp and marijuana, has been found to have a number of medical benefits on its own. It can lower and help control both inflammation and neuropathic pain. It’s known to help with epilepsy and other seizure-causing disorders. CBD oil can also help a great deal with a variety of anxiety disorders including PTSD.

Whether the THC or CBD portions have been utilized, one thing is clear – people have been using marijuana as medicine for millennia.

It’s important to note that no insurance company covers marijuana because it’s illegal in the US. While patients are saving money on opiates as they have to take fewer if any while using pot, their out-of-pocket costs can be quite high. Marijuana always has to be bought with cash and it’s not like you can get discounts on generic pot, either. That said, a few states including New Mexico allow for reimbursement of medical marijuana costs in workers compensation cases. In Canada, however, insurance companies will begin covering medical marijuana soon!

I hope things will begin to change soon. That means, though, that those of us who advocate for the use of marijuana or CBD oil need to start showing up in the political world. That’s the only way these things are going to change.

While we’re at it, I hope that we forgive marijuana-related crimes like San Francisco as we begin to legalize and normalize pot across the board. To say it’s a shame that people are still in jail for pot-related crimes in fully legal states is a gross understatement.

May: The Ultimate Awareness Month

Posted on by Grayson
May 1st marks the start of an awareness month practically tailor made for me – asthma & allergies, arthritis, mental health, and fibromyalgia.
My asthma is, honestly, getting worse. When I eat or laugh or sneeze, I have a hard time getting my breath back to normal… which is probably a sign that I need to use my inhaler more. My allergies always pick up this time of year, though tend to affect my asthma more than causing problems on their own.
My arthritis is steady. I’ve come a long way in two years, thanks to my daily injection and other medications. When the weather is rainy and humidity is high, though, I’m reminded of my limitations – especially at night, when pain relief just won’t come. My hands, neck, hips, and knees are furious.
Mentally, I’m in a good place. Depression and anxiety are staying at bay for the most part, thanks to all the things I’m doing. My PTSD is another story, but that’s alright. With April being my birthday month and May being the month I cut contact with Mother (and having Mother’s Day in it), I know this won’t be an easy time of year.
My fibromyalgia is doing okay right now. I have had fewer skin-aggravating symptoms like allodynia, which is that thing when normal sensations like clothing on your skin or holding hands can feel excruciatingly painful. Today, that’s a thing that’s started and is spreading. I’ll push through cause I have some errands to run, but I’ll be glad when I’m home and can get naked as quickly as possible. I wanted to shower today, but I don’t know that I’ll be able to – the water feels like daggers on allodynia-affected skin.
I always feel conflicted when people say things like “don’t let your disease define you.” My conditions all do – they’ve defined my life from a very young age. They’ve also given me a level of appreciation and compassion that isn’t always a thing for abled people. I’ve gotten to do amazing things, meet the best people, and enact some real change – things that I don’t know I’d be interested in if I was okay.

 

Can you be depressed and function at the same time?

Posted on by Grayson
In the past, some have questioned if I can be depressed, have anxiety, or deal with Post Traumatic Stress while I still accomplish so many things.
Via Tumblr
Depression, Anxiety, and PTSD have been, historically, some of the fuelers of the greatest things we’ve known – paintings, music, plays, books, etc.
Van Gogh was super depressed. The dude cut off his own ear.
Self-Portrait with Bandaged Ear
Come on.
Yet, he created some of the most beautiful art ever known.
Other notable awesome people with mental health issues include:
  • Michelangelo: OCD.
  • Tchaikovsky: Depression.
  • Beethoven: Bipolar Disorder & Depression.
  • Edgar Allan Poe: Depression.
  • Johnny Depp: Panic Attacks.
  • Isaac Newton: Bipolar Disorder.
  • Howie Mandel: OCD.
  • Demi Lovato: Bipolar Disorder.
  • Abraham Lincoln: Depression, Anxiety, and PTSD.
  • Buzz Aldrin: Depression.
  • Ernest Hemingway: Bipolar Disorder.
  • Marlon Brando: Depression.
  • Darrell Hammond: PTSD.
  • Carrie Fisher: Bipolar Disorder.
  • Calvin Coolidge: Depression.
  • Stephen Fry: Bipolar Disorder.
  • Kurt Cobain: ADD & Bipolar Disorder.
  • Agatha Christie: Depression.
  • Teri Hatcher: PTSD.
  • Jacqueline Kennedy Onassis: PTSD.
  • Whoopi Goldberg: PTSD.
  • Beyoncé: Depression.
Here we have world leaders, scientists, and entertainers. These people have changed the world despite their mental health issues.
Many of the people on this list are or were very open about their struggles with mental health as well. We discuss our mental health issues because we want others to stop feeling alone or like they have no one to turn to. When mental health issues are so prominent in the chronic illness community, why wouldn’t we discuss these as being just as valid and debilitating as other chronic illnesses?
Isn’t that the point of being a patient activist and blogger anyway?
Via Wisdom to Inspire
If Abe Lincoln can run the world, help fight a war, care for his wife’s mental health issues, and raise his kids while living with the very same three conditions I endure daily? I think I can conquer whatever lies ahead of me.

 

Post-injection life and therapy

Posted on by Grayson

My ortho told me not to get cocky. I’m really trying not to get cocky. I know that the kenalog takes 3-5 days to take full effect… but it also doesn’t kill me to go up the stairs anymore.

Something I’ve more or less dealt with my entire life that just got worse recently isn’t a thing at the moment.

I seriously don’t know how to handle this.

Don’t get me wrong – I was sore after the anesthesia wore off after the injection. I was sore yesterday morning (it was also snowing so maybe that?). Today I feel a lot better.

Ironically for just having gotten steroids injected, I’m really tired today.

Yesterday I started therapy again. We agreed that I need to learn some of the more basic social skills, namely how to set different kinds of boundaries. We also agreed that it would be beneficial for me to figure out what types of relationships I want with those in my life and talk with the people about them. I don’t know how real families work, so talking with my dad and his family and figuring out what we want our interactions to be would be good. I also need to process my emotions related to various events in my childhood and this situation with my mother who still is causing problems.

The nice thing is that my antidepressants are working well. As helpful as I know medicine is, there is still a part of me that was concerned to go on them at all. Growing up in a household that loved learning about medical care but thought it wasn’t okay to use it can be very confusing.

I’m spending more time with friends and family lately. Having my own car is helping with that for sure, but I think I’m also allowing myself to finally really be my own person. I also am trying to make up for some lost time… I feel as though I’ve needed so much more from my friends in the last year than I’ve given, though I know a lot of my friends don’t agree. Maybe it’s a little guilt over needing so much with the wedding.

These are my people!

My theme this month is all about healing, and I think I’m off to a great start!

 

Antidepressant update: day five

Posted on by Grayson

When this posts, I’ll be freaking out in a surgeon’s office over the whole torn labrum issue… so let’s talk about happy things!

I started my antidepressant Friday following a doctor appointment on Thursday… in the middle of having food poisoning, but no biggie, right?

As much as I felt awful from that all weekend, I noticed that I’ve laughed more – and not just more, but more deeply. I’ve felt more in the moment and my brain has been able to function quick enough to not only get T’s punny jokes right away but to also make my own.

Seriously, so nice.

I also slept in my bed for the first time in a WEEK Sunday night. My hip is a little less happy today because of it, but it was so worth it.

Playing with the guinea pigs was easier and I got quite a bit done because I had motivation. Part of that was likely due to the fact that I’ve eaten more than two bananas now that I’m recovering.

T and I also are consolidating finances so we can look at getting a house next year-ish. I was actually surprised what a good position we were in to get everything moved around the right way to pay off. It’s pretty awesome… plus now I can continue my HGTV obsession because it’ll mean something in a while.

I do still feel like I’m not up to speed at work.

But I’m being challenged in a great way and I can handle that. It just means I need to work a little harder at this, and with the mental fog lifted a little bit, I think that’s doable. Plus I’m working on some amazing projects and helping to keep patients more at the center of things which I LOVE.

For now, I’m off to be more anxious about my surgery consult. See ya on the flipside!

Mental Health Ableism: what our support groups are getting wrong

Posted on by Grayson
I need to rant a little bit about the ableism present against mental illnesses… mostly because holding in my frustrations about it worsens my own mental health issues, but also because it’s not talked about.
First, some stats…

In January, I was poking around in EPIC’s MyChart, an EMR system, to try to find information on both my MRI results (because waiting a week was nerve wracking) and what exactly my former rheumatologist was treating me for… Turns out NOT SJIA, but polyarticular JIA. Frustrations abound.

But I digress.

I found an after visit summary from my therapist I was seeing a few years ago starting before Laura passed away. He was helpful in dealing with the grief from her loss as well as the issues I had with my family situation, but wasn’t necessarily as helpful for other issues. I knew that I had been dealing with depression and anxiety, but he put down two diagnoses that I hadn’t seen for those – Generalized Anxiety Disorder (GAD) and moderate depression.

It would’ve been nice to know what was going on with me the last couple of years before last month!

I had a lot of life changes in the last year, so dealing with both was very difficult for me. Wanting everything with the wedding, with my family issues, etc, to go right brought about a lot of anxiety. I’m go grateful for how wonderful that day turned out to be. I’m just floored at how much laughter, fun, and love there was.

I met my dad and his family, which was awesome but a little scary. I’ll admit that. There are no words to describe it. My sister moved out to California and then discovered she was pregnant again. T and I moved and I changed jobs as well as having worse health issues. We adopted three adorable guinea piggies. T’s therapist retired, who has been a huge help to us both. He’s known T a few months longer than I have, and so he’s seen our whole relationship. I think around October I was doing really well, but when my hip issues started in December things went downhill again.

Me? Maybe

I have noticed with that change in my mental health how differently I’m approached by others in the chronic illness world. When I was doing well and putting more inspirational things out there, I was getting more feedback – mostly positive, but still. Now, when I’m a little more in need of that support, it seems that others aren’t always as willing to give it. People think I’m being extremely negative all the time by discussing what’s going on with me, my fears, and my anxieties. As an optimist at heart, that bugs me.

We all handle our physical illnesses differently, just as we do with our mental health struggles. Mental health is paramount to physical health and vice versa, which is a huge part of why those with issues on one side often end up with issues on the other. There just seems to be a huge disconnect in the chronic illness world between those who discuss one or the other.

A related issue seems to be the lack of support if you don’t fit one mold. A lot of that depends on those you know or what subcategory of illnesses you have, but it’s still an issue. I know some people who have been treated poorly because they’re able to do more physically, but I’ve also seen that go the other way. Right now being laid up, I see it a lot more.

Being MIA from being active is driving me nuts

In line with that, there are those who believe that if you’re positive you’ll do better. There are studies that go along with that, but that also state not to deny your emotions… Personally, if I hold emotions in, they build until I have a major mental health issue or flare up physically. I’m not the only one who knows/thinks that you have to give yourself permission to deal with your feelings.

There is a difference between encourage positivity and kind of pushing it on people, remarking things akin to “if you just focus on the good/light/etc, you’ll feel better.” That type of thinking is actually a form of victim blaming.

It’s not as easy as a choice

It’s so similar to when someone says “my uncle’s brother’s former roommate had that and he just started thinking happily and he’s fine now.” It really bothers me, especially always being someone people refer to as the ‘Pollyanna’ of our friend group or at work, etc.

I think we all know the problem with that type of thinking. It invalidates all the hard work we’ve done to try to get better. If someone suggests copper bracelets or what have you, they may want to truly find something to help you. That’s great and I love that there is support there, but it’s misguided and misdirected. Again, it invalidates your hard work, your feelings, etc, and you end up having to put on a happy/polite face so that people don’t get frustrated with your response.
Telling someone to ‘choose’ happiness invalidates the emotions they are going through. That’s not what we should be doing in the chronic illness community or as loving and compassionate people in general, not even close.
If you want to encourage others to be happy, that’s great! Encourage them to find things that make them happy, to try new hobbies they’ve wanted to get into, or to practice self care/love/compassion. Be there for them when they’re going through hard times. There is a difference between support and lecturing, and advice without the support is the latter.
If you want to encourage or coach someone, you have to acknowledge what they’re dealing with. You can’t simply say things like “Oh, it’s not that bad. You’ll be fine.” Invalidation does not work. Active listening, compassion, and empathy do.
I think it’s funny that these are things we want our doctors to do, and yet we as patients don’t do it to help each other!! We cannot honestly afford to be hypocritical when we’re trying to change the whole healthcare system!
I would love with all my heart to be ABLE to choose happiness over my depression and anxiety. I honestly would love nothing more than to be as calm in the face of adversity as my stepmom or handle frustrations as well as some of my other chronic illness friends. Believe me, I’m not choosing to feel the way that I do. I’m not choosing to lose sleep over not handling situations correctly or coming up with a great comment I should’ve made for a conversation I had with someone two years ago or to want to cry when I’m alone.
I’ll admit a lot of that is not helped by uncontrolled pain with this hip though oh my god. It keeps me up and my brain tries to keep me ‘entertained’ in the meantime.
Not being in a position to choose happiness, I ask that we stop acting like it’s always a choice. The idea of some methods of promoting positivity being akin to victim blaming isn’t going to be a popular one. Many people won’t see it that way, and that’s fine. I fully acknowledge that my ideas on this aren’t for everyone. I recognize that I’ve lived a very different life from many other people. I’ve been through all sorts of abuse and, honestly, could probably add a bit of PTSD to my mental illness repertoire. Not everyone deals with these issues, and some people deal with more.

Honestly I just really hope that this post gets people talking about mental health more than just stating that there is a problem with how we approach it as a society. We need to start asking how to treat others and ourselves with more compassion. I’ll start – Thursday at my appointment with my primary care doc, I’m going to ask about medications for depression. Things aren’t super horrible right now, but they’re not as good as they were… and being laid up and dealing with recovering from a surgery is going to make them worse. I’m going to take some proactive measures and see if I can’t get myself to a better place mentally with medications since I can’t balance it on my own with coping mechanisms and meditation. They both help tremendously, but not enough.

Have a cuppa!

If you’re looking for resources on self love/care/etc, wander up above to the resources page.

What do you think? Are you an optimist, realist or pessimist? Does thinking positively help you, or does it frustrate you when people suggest that as a solution? What’s your experience been like?

Perhaps more importantly, what are you going to do to start showing more compassion and empathy towards others?

2012: A Year in Review

Posted on by Grayson

2012 was an… interesting year for me. It’s not like it was horrible – and yet there were definitely times it was. It has been a tough year.

In January, I officiated a wedding between two good friends. It was wonderful to be a part of their special day. I always knew they would end up together. I also had a good ophthalmology appointment, thankfully, after dealing with some more uveitis off and on in the end of 2011. I also started MTX injections to see if I could handle them better than the pills to help boost Humira. It seemed like it was okay, until the back spasms that still plague me today started and the MTX had too much of an affect on my energy levels and my body function. I was coming to terms with the fact that this semester would be my last in graduate school, as my illness was worsening enough to cause too many problems.

In February, I learned that I was on the verge of getting fired because of misunderstanding poorly explained attendance policy information at work. I brought a note from my rheumatologist about the flare up nature of my disease and stated that I shouldn’t be in as much trouble as I was because I wasn’t missing days to go dick around or go to concerts – I was missing days with illness. I got to play the waiting game. I also saw a PT a number of times for my left knee and back.

With March came the JAM walk in Minneapolis at the Mall of America. We took a long weekend and drove up there, enjoying experiencing the shopping and food nearby. I also had been taking Arava instead of the MTX – but even with that, Humira was definitely not working.

By April, I had run out of my free shipments of Humira from Abbott anyway and it was as good a time as any to make an appt with my rheumy about switching to Enbrel. Even though we decided on switching in April, it would be May before I could start it. I set up a new GP since having one at the university I was no longer attending wasn’t helping anything. I also got to see one of our favorite musicians, Eric Hutchinson, right before my birthday.

May brought with it another arthritis walk, where my sweet boyfriend got an ‘arthritis hero’ sign for me. Doing the whole walk was really tough, as my hips were definitely not excited about a 5k. I had a bone density test, which came back perfectly normal. I participated in the first ever World Autoimmune Arthritis Day (WAAD) by preparing a number of documents and a presentation on living life to the fullest with autoimmune arthritis. The same weekend that was going on, the fiance and I got to go try out for Jeopardy. I have literally been training for that since I was very little and it was great great fun to be a part of it. I had to stop Enbrel after my first injection for about a month due to a sinus infection that got so bad as to swell my entire face. At the end of the month, my rheumy’s NP cleared me for Enbrel again and I got to spend some time with a few friends in town running a marathon… which turned into a half instead because of the horrible hot spell we were having.

By June, dealing with the mental issues of having an illness caught up with me. Though I wasn’t suicidal by any means, I was having thoughts that scared me and I had my first appt with my therapist. The Enbrel was working well enough that we decided I should try it without the Arava as it was upsetting my stomach. The boyfriend and I also went on a wonderful vacation, seeing some sights associated with the Civil War and Abe Lincoln, taking in a Cincinnati Reds game, and meeting one of the best spoonie friends I have ever had. I was able to do so much more physically than I thought I would because of the Enbrel. I also had some dental work done.

As a result of that dental work and taking antibiotics as a precaution, July saw me dealing with C-diff – an infection that is one of the leading killers in hospitals every single year. I dealt with it for 11 days before seeking treatment, thinking it was just salmonella or food poisoning. I am very lucky I got better and didn’t have to face hospitalization. I did drag the boyfriend to Urgent Care on his birthday though, and scared the crap out of him when the nurses came to get him to bring him back to the exam room where I was getting my first IV of fluids due to terrible dehydration. This meant another month with no Enbrel. I got to see Dave Matthews Band, one of my favorites since I was little. I could’ve done without the copious amounts of drugs being done around us but it was neat nonetheless. I went with my sister to her last prenatal visit, and tried to talk to my GP about pain meds. He sent me home with ten pills total. UGH. But I also got  a nice haircut and color, and saw the new Batman movie all by myself.

August started off with a bang. On the 1st, I was lucky enough to get to be around for the birth of my niece Marissa Mae. I got to spend time with my best friend when she came along with the boyfriend and I to the Irish Fest Arthritis Walk in Milwaukee. I wasn’t able to walk all of it and almost had to break out the cane to retrace my steps. It was a tough tough day. The next day though, I got to see my idol Hugh Laurie in concert playing the blues. It was one of the most amazing things I have been able to do. I cried out of happiness and being moved by his music. We finished the month off with a Milwaukee Brewers game and spending some time with the boyfriend’s dad.

And then came September. We started the month off with a friend’s wedding and then having to miss Marissa’s blessing because of horrible fibro and rheum pain. It was a horrible day pain wise, but even worse knowing that my family maybe didn’t understand and thought I was an atheist freaking out about going inside a Mormon church again. We went to a Juvenile Arthritis Family Network meeting, along with Megan and Mia and Megan’s sister who deals with AS. It was wonderful to get to meet them after talking so much with them since June when Megan found this lovely blog. I had an appt with my rheumy’s NP, only to get diagnosed with fibromyalgia on top of my Still’s. On the 20th, the boyfriend and I had our 5 year anniversary and headed out to Dubuque to celebrate for the weekend, where he proposed 🙂

In October, I got to spend some time with my best friend and now maid of honor. I was also finally granted FMLA at my job which has made things a lot easier. I babysat Marissa for a while so my sister and her hubby could go out on a date for their one year anniversary, and we found out Marissa likes ukulele music.

November was a hellish month though. I had four appts between the 8th and 9th, one of which was a sleep study. I had to stop Enbrel AGAIN (seriously??) because of an issue with my throat and all doctors involved not wanting to see that end up as an infection. I gave a speech at an Arthritis Foundation fundraiser and got a hug from a Heisman Trophy winner. I also celebrated the 19 year birthday of my Still’s on the 14th and we made a cake. In two years, I am having a 21st birthday party all over again I swear. I also started seeing 2 PTs for my neck/spine, one being pool based therapy.

December has been an incredibly tough month. Cold weather always makes Arthur an ass, and it is definitely doing so now. I’m mid flare as I type this even. And what’s worse for sure is losing someone that I was so close to, that always had ideas and advice and help even if she was going through worse. Losing Laura has made the rheum community come together in a way I have never seen before. She was truly an angel and I am grateful that she isn’t hurting anymore, but I am so sad not only for myself and our other friends but for her fiance and families. As so many others have put it, her death makes me feel numb and I know that I am having a hard time dealing with it. There is a void left by her absence that will never be filled.

While I was lucky enough to go through some amazing once-in-a-lifetime kinds of things this year, I am ready for it to be over and to start anew. Dear 2013, bring a bunch of kick ass things like 2012 had but can you leave the crappy parts behind? I could really really use a break.

Arthur, the emotional vampire

Posted on by Grayson

There are days where I can barely move, where I have to change my plans because of Arthur. Many days grocery shopping I have to lean on the cart for support. Those days are tough and it takes a lot to get through them but it is doable.

The worst of it though are the days where the emotional toll of living with Arthur gets to be too much. It’s more debilitating than the physical effects of this disease. I can get help with the physical – the fiance can do xyz for me when I am unable. But I can’t get him to quell the negative thoughts that I constantly have. No one can listen to my thoughts for me and no one else can bear that load.

I always talk about how lucky I am to have gotten ill when I was so young that I don’t remember ‘normal’ but that also means that all of these negative thoughts have plagued me for far longer than they should. An 8 year old shouldn’t be so depressed and overwhelmed with pain that they don’t want to be alive. I know that others have it worse, but it is so hard to deal with.

Thanks to Arthur, I have always been a fighter. It has been something that served me well my entire life. But there is a point where you get tired of fighting your way through everything. I don;t want to fight to make it through a work day or a special event or just to be able to breathe. I just want to be able to rest without worrying about what comes next, without thinking about how painful it is going to be when I get up or go to work or to therapy.

I need to take a break from Arthur, a vacation from my illness. Too bad he follows me no matter what.