Category: life changes

Love, Burlesque, and Hockey – Oh my!

Posted on by Grayson

Back in July, I got settled into my own place. It’s felt both odd and liberating to make it my own. T and I are working through the divorce paperwork now and are being friendly.

In the time since being on my own (or as the marriage was ending at least), I’ve done a few things I’m really proud of.

 

The first? I started dating someone I am very in love with. They are also nonbinary, queer, and a Taurus. We get along so well. I’ve never had the types of interesting conversations we have with anyone before. We embrace being silly, provide each other with emotional support, and… well, we have really great sex.

On top of that, they see me as I really am! I’m able to be completely vulnerable with them in a way I never have with anyone. I straight up brought up MAS the other day in person with them and talked about it. If you’ve been reading the site for a bit, you’ll know I started blogging to explain anything and everything about SJIA to the ex because 1) he didn’t really listen, and, 2) I was afraid to share a lot with him. But Ian? I could (and do) make comments about anything and everything. They’ve helped me through so many panic attacks and rough physical days, too. They’re really great.

Go figure, it took dating someone else dealing with chronic illness and being a part of the LGBTQ+ community for me to really feel seen.

My sister says I’m more myself than I’ve been in ages, and she’s right.

 

Before the breakup, I had set up a boudoir shoot with a friend. It turned into an amazingly affirming experience to model for her. Here’s one of my favorite pics (more to come):

a B&W close up of K outside with their eyes closed

 

Embracing the sexy side of me also saw me starting dance classes! Yeah, I know! I took belly dance and burlesque… and then, last Saturday, had my first burlesque performance. It went really well, and I can’t wait until the next one. It’s weird, but being topless in front of people wasn’t nearly as scary as I thought it would be!

selfie of K wearing cat attire and sticking their tongue out

 

Now, you read hockey in the title. I know some people might be a little concerned about what that means for me, haha.

I am playing hockey with my arthritis.

K wearing hockey gear and skating; they are about to receive a pass

I’m playing with a local LGBTQ league – the largest one in the world. It’s kicking my ass but in the best way. I’ve gone from being unable to really stand on skates to being able to skate, albeit slowly.

It’s been a lot of hard work. I’ve spent a ton of time in the gym and skating and doing other exercises. I’ve done a lot of squats, haha. My physical therapist has been giving me exercises to strengthen the muscles I needed to work most on.

Naturally, being me, I’ve had two pretty rough falls. The first saw me pull some muscles. The second saw me bruise my tailbone. The latter was last Sunday and my butt is still a little sore, but it’s amazing how different my body feels. Sure, these injuries haven’t been awesome. At the same time, the pain is almost… enjoyable? It’s because I’m doing something other than just existing.

The changes in my body are just phenomenal. I’ve lost a good amount of weight, gained a bunch of muscle, and am so much stronger.

Our first game is Nov 3rd and I’m so excited. I’ll be sharing goalie duty with two pals and playing another position (probably one of the wings).

 

I was in Nashville last week with a group of SJIA parents, and it was so amazing to share all of these things I’m doing. To tell them that, yeah, things like playing hockey are possible? Their reactions alone were worth the hard work I’ve put into my physical health since June.

I’m so incredibly happy.

Self Love & Care: the danger of toxic people

Posted on by Grayson

Back in December, I wrote a beginner’s guide to self love & self care. It’s a subject that I would like to start talking about more – both because it is so very needed for the chronically ill and because I sorely need a boost of both. For this post, we’ll be talking about toxic relationships and their affects on the self.

We’ve all been in relationships, no matter the nature, where one person has more power than us. Generally that isn’t a problem. When you encounter or are forced to deal with someone toxic, it becomes a huge issue. You might notice that this person often goes on power trips. They may make passive aggressive comments or comments fishing for compliments: “Oh, that hat is so cute. I could never wear it.” We all know what they’re really trying to say…

We all do things like this occasionally, but toxic people make it a habit to be slyly rude or bring drama everywhere they go. For those people we always have to deal with, like bosses, there isn’t much that can be done to remedy the situation. However, personal relationships should not include this type of negative energy.

Toxic relationships can be hard to get away from. They can be like religious conversions, where you really have to go extreme to make the change. For some, that’s moving out unexpectedly or while this person is away. For others, it’s changing phone numbers and altering privacy settings on social media. Some even have to eliminate mutual friendships or ties with family to really get away.

People won’t often understand. They’ll misquote the blood is thicker than water thing and just no. First of all, that quote means the opposite of what everyone assumes – bonds you form are stronger than those you’re born into. Secondly, you have the right to walk away from anyone or anything that harms you. Thirdly? Who cares what other people think! The only opinion that matters in self care is yours. As long as you’re not harming someone or creating dangerous habits (I’m looking at you, credit card debt!), go for it.

If cutting off all contact with a toxic person in your life isn’t an option, you will want to alter the relationship so that you can gain the upper hand. There are too many ways to do this for me to be able to list them here, but moving out or changing your personal circumstances will often lead to this. You can then control just how much contact you have with this person, and in what context that contact happens. Maybe you can handle being around this person for an hour, but that’s the maximum. You can make sure to make yourself busy or unavailable for more than an hour at a time.

Perhaps, like myself, you deal with family members who can’t understand what no contact means. Dealing with the stress of my family situation right now is very difficult. The toxic people in my life have been trying to squeeze information out of family members, which makes it difficult to know who in my family is okay to talk to. This severely limits my abilities to communicate with family or family friends which is really hard.

After reflection though, I know that not having contact with the toxic people in my life is what I need. It preserves my mental and physical health, as I’m not as anxious or depressed or holding in emotions which is known to make me flare. I have more integrity because I’ve stopped lying to myself or trying to force myself into uncomfortable situations. I’m also a hell of a lot less angry. True, some of the things I’m processing about my past are hard and bring up anger or fear. I am sharing more of those emotions with others in healthy ways and looking at things logically.

In the last year, I have grown in so many ways. I think my visit in March of last year to DC with the Arthritis Advocacy Summit really helped cement in my mind that I was not dependent on anyone else. Sure, there are people in my life that I love and want in it. I would be sad to lose them. But I learned that I am self-sufficient, something that I was told I would never be – whether due to my illness or the fact that I didn’t react to things as some thought I should.

Regardless, the personal growth I’ve had is amazing. I like myself so much better right now than I did a year ago. I even wore some crop tops over the summer! I enjoy the things I’m doing at work. They’re challenging but fun and really (eventually at least) helping patients. I love my boss. She and I are so similar and, having kids about my age, she is incredibly nurturing. I enjoy the other health care providers and administrators I work with.

Whether your toxic relationship is with a parent, a significant other, a friend, or someone else, I hope that you realize how very worth the fight you are. You deserve to be happy. That happiness cannot be dependent on others though.

One more story…

Before the last year of shakeups in my familial situation, I was plagued by doubts. When I was alone – whether in the shower for 15 minutes or on a 90 minute car ride – I would sit and think about what I had done or was doing wrong. I would think about how I wasn’t good enough or the mistakes I made. It was so bad that I was barely sleeping unless I had some alcohol at our weekly trivia night or took a muscle relaxer. I wondered if I was good enough to meet my dad, to marry my husband, to be in my niece’s life. I felt very stuck because I couldn’t get past these roadblocks set up for me by others.

I won’t say all of that is gone. There are still times where I struggle with decisions or mistakes, like being less than understanding for my sister when she’s faced hard things. I’m not fussing over my shock when I ran into celebrities years ago though. I’m not plagued by thoughts of how I should’ve told Bob Uecker how much I think he’s awesome or gotten his autograph… and it’s not just because he returned an RSVP card from the wedding.

Okay, it might help.

The point is that without the toxicity in my life, I can finally learn how to allow myself to make mistakes and to forgive myself for them. I’m learning how to love myself because, without that influence of toxic people and the issues they bring, I’m FINALLY getting to learn who I really am. I’m learning more what I like, what I think is funny, and what I really want out of life.

Perhaps the best thing is I’m no longer held up to standards that I can’t reach. I’m never going to be the president or a high level diplomat. I’m not going to run a crazy successful business. I’ll never be model thin… though I wouldn’t want to be either. I will do what I can in my current job to help kids. I will do what I can to help chronically awesome peeps with my advocacy and to help open the eyes of some of these toxic politicians. I will love the heck out of my little guinea pigs, my niece, and my soon-to-be-born nephew. I will create whatever relationship with my father and the family that he and I want. I will spend time with friends and not be restrained by the expectation that I should be at home locked away. I will travel and goof around with my husband. I will laugh deeply and love more strongly.

Right now the only expectation that I hold myself to is to be happy and to rock this one life that I’ve got. I couldn’t make those decisions without eliminating the toxic elements in my life. I hope that you can make any changes you need to in this area as well. It has been the biggest change for my health, mental and physical.

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!

3 weeks into the new job and life updates

Posted on by Grayson

And I’m hooked.

I can use my skill for real things. I work with doctors who LISTEN not just hear what you have to say. Granted, for treating kids you kinda have to? Still though.

I have gotten through two of my three monthly meetings intact. I also have met probably 85 people out of out 400ish people unit… and others that don’t count towards that total. I work somewhere where my organizational skills are appreciated too, and that’s awesome.

It’s been a busy couple of weeks, and I’m glad to say that things will start to slightly slow down soon.

I hope.

Next Thursday I see another rheumatologist for her thoughts. She’s treated Still’s before and was puzzled why I’m on TNF drugs instead of kineret, actemra, or others. I’m glad someone else was as confused about that as I was! Am? I hope to report back good things! The welcome packet the team sent me for her clinic is already way better than anything I’ve gotten from my current place.

That night I also am getting together with some of my fabulous former coworkers who I’m missing like crazy.

My hip pain has lessened to the point where I don’t have to take the few precious narcotics I have every day anymore. We upped my NSAID so that’s helping too. I’m also realizing how out of it taking my flexeril makes me, so I’m stopping taking that at bedtime at least during the week. If I can sleep in and need to have it to sleep or for my spasms, I’ll use it. This will also help me see how well my lyrica is working for my fibro pain/sleep.

Hopefully I’ll hear back the week of Feb 2nd from the surgeon. While the pain has lessened, it’s not gone and it’s definitely still restricting my range of motion. I can only hope dude thinks I’m a good candidate for the surgery.

I’ve got more books to read, so you’ll start seeing more reviews posted in the coming months.

I’m back to the old me again – or, how a medium helped me figure out my life

Posted on by Grayson

If you’ve followed me for a few years, you know that the last few have been really hard on me. At the end of 2011, I made the tough decision to stop going to graduate school because I just couldn’t function well enough to go to school and work. I began to grow really bitter, sad, and angry with the world. There were multiple occasions where depression was really high just with that decision. And then in December of 2012, Laura passed away of complications relating to our disease – complications a good medical team should have seen coming and caught. Any sadness I had left turned into fear and a burning anger. That anger became directed especially at those who believe in going all natural and stopping (or not starting) treatment that is life saving. I did some really great and meaningful work as a result with different organizations, but that anger never really went away. More stressful life changes happened – some of them sucked and some of them were amazing. I’ve had a few breakthroughs in the last several months where I’ve been able to be the real me again, but they never lasted too terribly long. I always went right back to huge amounts of anger, anxiety, and overwhelming fear. There have been many nights where I’ve cried myself to sleep because I get stuck in a loop of what ifs and whens and thinking about what will happen in the future. In the last few weeks, it really hit me that I’ve become a super unhappy person.

A large part of that was explained within the last several months as I began to learn and remember more how I was raised and the things I went through or witnessed while growing up. Everything just really came to a head at once, even though it came on slowly.

On Monday of last week, I got some news that someone close to me was diagnosed with lupus. Her symptoms started about the time we connected, which made me think of Laura. I won’t go into specifics because that is something I hold sacred, but she gives me signs pretty regularly that she’s around in some way. In death, she connected me with some amazing friends who have continued to give me support in her absence. I’ve been wanting to see a medium for some time, but this experience was just too close to let pass by. Thursday afternoon, I went and saw a medium. I wasn’t really sure what to expect. I’m still not sure how much of what she told me I believe. She encouraged me to incorporate some more natural aspects into my care, which I’m taking steps to do. She also told me some things about my future that have really helped to put my mind at ease, some of it coming from Laura. That alone was worth the trip to see this medium. To have some of the issues I’ve faced validated by another woman who grew up in a very similar home situation was just icing on the cake.

I don’t know how much the steps the medium asked me to take will help me improve my health. Some of these are things that I’ve fought against for a long time, and others are things that I just don’t know will help at all. However, I’ve gotten back to the point I was at several years ago, where I’m willing to try, to make the effort. I’m ready to fight this with all I’ve got again, instead of being as passive and go with the flow as I’ve been lately in my care. There wasn’t a whole lot she shared with me that I hadn’t heard before in some way, but this time I was open to it and ready to hear it. This is a part of a major set of lifestyle changes for me. I’ve made some dietary changes and started making a lot of healthier changes in general. This, of course, on top of what I’ve already done this year to cut out toxic and abusive people from my life. I’m looking at changing rheumatologists as I’ve found one here in town who knows this disease and doesn’t understand why I’m on a TNF drug. She’s excited to work with me, and I’m excited to get a little more focused care. I’m eager to see what will happen as a result of all of these changes.

So, say hello to the new (old) me? I’m writing more, working on more projects, and eager to get started on making these changes. I hope you’ll join in on this new journey with me.

In 2012, during a really hard day for me, Laura said that that year was going to be my year as I was accomplishing a lot – writing here and there for a few different big name places, giving a speech for the Arthritis Foundation, getting engaged, etc. I honestly think she was a couple years too early. I couldn’t have written my life the way that it’s played out so far, and I’m ready to start the next chapter.

Wedded Bliss & A Crazy 2014

Posted on by Grayson

I can’t believe I’ve been married over a fortnight. It’s all a little weird. Aside from feeling more comfortable in my relationship, I didn’t think anything would really change. And yet, here I sit feeling like a very different me than I expected. Some of that, no doubt, comes from the fact that I spent so much time thinking about and planning this wedding that I feel a little empty now. I’m not sure what to do with myself, other than to mother our new guinea pigs Gus Gus and Jaq… which means they’re kind of possibly spoiled piggies.

The wedding went so much better than I could’ve ever expected. There was no drama. Things did actually stay pretty close to our schedule. I got to spend time with each of the important people in my life, and those people all got to meet each other. I danced most of the night, but what can you expect when they send a DJ who could be your musical twin and teaches you how to do the dances? I got to dance with my sisters, even the ones who aren’t related to me at all, and with the awesome men in my life. I also got to spend some time with some of the cool spoonies I know, for which I’ll always be grateful.

One of my favorite parts was being able to dance with my dad, even for a short time. For most girls, that’s a no-brainer. Personally, I wasn’t sure that would ever happen. You see, up until the beginning of August I had never gotten to meet my dad, and I had only talked to him a few times. I feel like I share an awful lot with you guys, but I haven’t been able to share everything lately. One of the big things I learned this year was that there was a reason my little family seemed askew, and it’s definitely been a part of the lack of new posts here. I really don’t want to go into too much detail, because it’s hard and I’m still recognizing a lot of it, but I learned that abuse comes in many forms. Dysfunction and abuse are different. Unfortunately, most abusers do not change and we have to cut off contact to live our lives safely and happily. My dad didn’t even know I existed until I was five, until this disease had hit and brought with it too many bills to handle. A custody battle ensued. They were told I was fine and happy where I was, while I was told he only wanted custody so he didn’t have to pay child support. I was told growing up that the lack of insurance was why I couldn’t try new things or get hurt, when dad had to keep insurance on me the whole time. I didn’t see a doctor or dentist from the time I was maybe eight until I was a senior in college, due to that supposed lack of insurance, and now have spent a very large amount of time and money to try to fix those things… which I’m still working on. My dad gave us money so I could get a hot tub to do water therapy daily. The money was spent elsewhere, and that was always a dangling promise *if* I did well enough or acted nicely enough. I’ve already talked a little about the abuse I’ve gone through due to people outside of the family too, and I’ve realized a little more about who knew things about that and didn’t do anything. I could go on, but I won’t, mostly because it’s hard. I don’t want to be a bitter person or focus on the past, as much as it seems it would be good to get a lot of it out.

I won’t lie – I’m having a hard time dealing with everything. Dealing with coming to terms with how I grew up is being very difficult, and part of me is so very angry. I feel like I’m having to discover who I really am now too, and that’s not an easy thing to do when you’re in the middle of living your life! It’s a lot to take in a very short amount of time, especially when I’m physically feeling okay. I wish my physical pain matched my emotional turmoil. It usually does, and the fact that it really isn’t is both great and unsettling since I’m so used to it.

I think one of the most comforting things to know is that I am not alone in anything I do now like I felt I was growing up. I’m so grateful to have a sister I’ve known since she was born, and now to add a brother and another sister onto that is amazing. I have a dad and a stepmom who are more amazing than I could’ve hoped for. I don’t know that I could be their kid more than I am if they had raised me. I have T’s family, who are so caring and so helpful. I have some of the best friends in the world, including other spoonies and the person who helped me to really open up my eyes to the abuse I’ve gone through and has really and truly helped me get through all this without going bonkers. And, of course, I have T too.

All these great people make up my FOC, or Family of Choice. I couldn’t be happier to have them as a part of my life going forward.

A lot of changes

Posted on by Grayson

Fun things I’ve been up to:

  • Moving this week (until Monday)
  • Unpacking and getting organized (forever)
  • Skipping my Cimzia because I’m bad and didn’t want to do the shot in the middle of moving so I’m on my fourth week post-shot. The med is working well for me though, so that’s happy news.
  • Practicing my ukulele because I’ll be performing in public for a few performances later in the month (WHAT)
  • Finalizing a bunch of the wedding planning – alterations and a hair trial at the end of the month and I still have to buy a good amount of stuff for decoration, etc. Shower and bachelorette party are coming up too!
  • Cutting toxic people out of my life. I may elaborate in the future, but I’ve come to realize who I want to spend spoons on and who sucks the life out of me. Life is too short, especially with limited spoons, right?
  • Starting PT again because my left knee just sucks. He’s got me doing a lot to strengthen the left hip, because he thinks that is where a lot of the issue is coming from. He also thinks that my leg length discrepancy is actually caused by my scoliosis and not the other way around – laying down it’s only maybe 1/8 of an inch, so that makes sense.
  • I want to revamp the site a little bit, so please feel free to share information on what would be helpful for you to have easy access to (journal articles? doctor lists? JA resources?)
All in all, I’m feeling like a chicken without a head haha. Things will improve at the very least after the move is over, and I really get down to business on the other things.
Hope you’re all doing well!