Day 5: Soapbox on self care #NHBPM

Posted on by Grayson

I’m hopping up onto my health activist soapbox. But it’s okay you guys! It’s today’s prompt!

It irks me to no end when people don’t take care of themselves. I think it is one thing when you don’t know you have a health issue, but to know you have a problem or an illness and to ignore it just – uh – I can’t formulate words even.

Here’s the deal – even if you have terrible self esteem, you don’t have to take care of yourself for yourself. I mean, obviously you should, this should be something you want to do. We all have people in our lives, though, that we care about and that depend on us for one reason or another. Maybe it’s your sister who needs to have you for mental and emotional support, or maybe it’s your significant other who needs you around for that and more. Maybe you have children and they depend on you financially. Even if you don’t care enough to take care of yourself, you should care enough that these people need your support.

There are people who do a million things for others and don’t do anything for themselves including taking care of themselves and the logic is “Oh, I have to help and take care of these people first!” Here’s the deal – if you’re dying out of neglecting to take care of yourself, those people are going to lose you. Wouldn’t it make more sense to take care of yourself the right ways and be able to be around longer? There’s a reason the airlines all say to tend to your own oxygen mask first.

That little bugger should have grown up faster. Then this wouldn’t be an issue.

I wish that more people would understand the logic in this idea. Sadly it is a huge issue in the #rheum community all over the world. We think that we are not enough because we are damaged and so we have to make up for it by coddling and helping others. Our self-esteem won’t let us realize how important it is for us to take care of ourselves and we end up with infections, deformities, and worse.

I am sure that part of the issue is how society still treats women. We have come a long way from the infancy of our country, but we still get paid less than men do – and are more likely to have an autoimmune disorder than men too.

I could keep ranting and raving and explaining, but I think it would just drag down the point. We have to take care of ourselves. Or, at least, I’d rather take care of myself than end up like a pile of peanut brittle at the bottom of the stairs.

Day 4: My bare necessitiees #NHBPM

Posted on by Grayson

“Write about what’s in your bag/purse/backpack every day.”

Well, for starters I always have my wallet with me. People might think “duh” but it’s not because I’m neurotic about someone stealing the little money I do have – it’s because I have a list in there of what I’m allergic to, my meds, my health issues, and my doctors/emergency contacts. If I manage to not have my wallet, then I always have my phone with the same information. I really should get a bracelet but meeeeh.

I shouldn’t have that attitude.

I also always make sure to have a pen. When you need one you never really have one.

I always have to have chap stick and lotion also, especially heading into the drier months. I usually will have cough drops then too.

No matter where I go though, I always make sure to have my little thing of pills with me. No matter how many purse transfers I go through for whatever reasons, I always have that and I always refill it (or at least check to see if I need to) once a week when I refill my daily pill holder. Some days I don’t need that second NSAID dose or a multitude of muscle relaxers, but it’s always better to have them and not need them than to need them and not have them.

What are some of the must-haves you carry with you?

Day 3: How do you deal with relationships gone bad? #NHBPM

Posted on by Grayson

Today’s prompt is to talk about something I don’t know much about but that I would like to.

It’s tough to think about because in reality when I want to know about something I have always been the kind of person to go right to the internet or a library and learn as much as I can. I guess you could say that it’s the one downfall to how I’ve approached education – I learn enough to satisfy my curiosity on a subject and then I move on.

I guess the biggest thing would be how to deal with relationships gone bad. No, nothing is wrong between me and the fiance – I mean relationships in general. There are a number of people that I have a hard time dealing with because we disagree so much on certain subjects. Even when trying to avoid those subjects, there is still a lot of tension and hostility. It makes it even worse when someone assumes that the source of all my hostility stems from one specific event and not logic being applied to many situations.

I have always been the odd girl out, the kind-of loaner. In eighth grade, when I returned to school after having to be homeschooled a few weeks into first grade because of my Arthur, that was very apparent. I fell into a great group of kids and never had to worry about being a loaner again really. It was that way until college. Surprisingly when you move across the country and have no ties in the new place, you revert to old ways.

As someone who uses a fair amount of logic, it’s easy to say that relationships are similar to a bank account and when someone takes way more than they give you should close the account. It’s always so much easier in your head to think that than it is to apply that to people – especially if you’re a person who was taught to speak up when something was wrong and to stand for what you believe in. If you’re friend is racist, does laughing at his jokes or pretending to send a message that you’re okay with that? If someone thinks everything you do is wrong and spending time with them turns into a Bible class or an attempt to change you, at what point do you void the relationship? If someone is constantly bailing out on you, do you still try to make plans?

I guess, long story short, I’d like to know more about how to make relationships work for me better and to try to limit the drama and stress that they seem to cause… maybe I could be sane then?

Day 2: Tony Snow was a smart guy #NHBPM

Posted on by Grayson

Today’s prompt is to pick a quotation and run with it.

The secret of learning to be sick is this: Illness doesn’t make you less of what you were. You are still you.

-Tony Snow

Oh Tony, but what if you fell ill so young that you didn’t really have a ‘you’ to begin with?

I always talk about how I’m lucky to have fallen ill at such a young age, how I wasn’t like a high school track star who fell ill or a marathon runner or an archaeologist in the desert climbing up to perilous caves for excavating. I was a little girl in kindergarten. In fact, I fell ill on November 14th, 1993. In a fortnight, my illness will be 19.

It’s hard to think about the kind of person I might have been without this. Surely I would not have been picked on every day in school for being heavier, because I would have been able to be more fit. I wouldn’t have gotten weird looks for having an ace bandage on for one day. I would have been able to participate more in PE. I would have finished graduate school and probably have a better job than the one I have right now. I’d feel a hell of a lot more useful that’s for sure.

But I am me, the little girl whose sexual abuse started not too long after the onset of this odd illness – the little girl who was homeschooled and finished ‘normal’ high school with honors, with an international baccalaureate degree, and as a valedictorian. I think that was all related to my illness though. What do you do when you can’t play sports? You spend time with friends and, if they’re brainy, you all end up as valedictorians together.

I like who I am and I know that the decisions I have made have led me to where I am right now. It is always hard to wonder what I would have been though without my illness.

My favorite thing about social media #NHBPM

Posted on by Grayson

November brings with it the start of National Health Blog Post Month and since I’ve been lax on updating things, I figured it wouldn’t be a bad idea to have to write a post every day this month.

Today, I had the choice between ‘why I write about my health’ and the topic you see before you. Since I wrote about the former earlier this year, I figured I wouldn’t bore you with it again 🙂

To me, social media has opened up a whole new life. At first, I used these things to stay connected with my extended family 2200 miles away and my high school friends who, six years after graduation, I still miss dearly. But as I did start to share the battles I go through with my illness – and the battles I’ve gone through since childhood – I was able to meet so many people who helped me to realize that I am not alone. For me, social media is an online health community. On twitter, I will rant about things with my family, wedding planning, and more – but the bulk of what I share all has to do with the health community that I am a part of.

Social media not only allows me the ability to watch my cousins grow up through pictures posted on facebook but also lets me ask questions about situations and in reality has probably saved my life. Back in July when I had C-diff (UGGHHHHH) really the only reason I got help was because a number of friends kept pushing me, kept checking on me, and really forced me to go – as much as you can from 9 hours away.

And even more than that, social media has given me a family that I did not have before. My extended family is full of people who share too much with each other and gossip and it ends up being a very catty situation. My social media family never judges me like that and they are always there for me, whether they’re in England and I’m up at 4am or they’re just an hour away from me.

Without social media, my only real rock in my support system is my fiance. I love him to death, but we all need more than one person to share woes and accomplishments with sometimes – and to push us when we’d rather not move.

So, with that, I love you all and you’re awesome 🙂

Something Borrowed, Something Blue

Posted on by Grayson

It’s 663 days until I get married. All the crazy emotions that I didn’t necessarily go through a month ago when he proposed are slowly making their way out now.

I knew from the minute I met him that I’d spend the rest of my life with him, so maybe it is finally really hitting home as the ring has dug its place into my finger and I really start looking at venues and ways to make things cheaper myself.

(Can we talk for a minute that I’m actually wearing a ring 24/7? I didn’t think that would happen. Awesome.)

Perhaps it is the reality of a wedding as a chronically ill person hitting me instead, or the idea of spending my life with someone when statistically speaking I’ll live a shorter life. Maybe it’s just the fall-going-into-winter-blues or some combination of everything.

In any case, I’m freaking out and having existential crises all over the place. I’m sure it doesn’t help that I’ve been dealing with a lot of pain and fucking disease issues lately so I’ve missed more work and feel in general pretty useless. It’s really hard to be positive and look on the bright side when you can’t do what you want or what you need to do – and even how much worse things can/could/might get. I’m tired of being no negative and feeling so angry all.the.time.

As far as weddings go, we went to two this year. Well, one I officiated in January because I’m a freaking minister (yuuuup) and the other we went to and I had no role. In between the ceremonies and the receptions for both, I had to rest. I’m not talking just go and have a sit down – we’re talking like borderline napping. I danced a bunch at the one in January, drank a little, but also kept going up to our hotel room to rest again. I missed most of the reception at the one in September because of resting and skipping out on the dinner because of my food allergies. Between the time at the ceremony and the reception, we were there maybe an hour and a half to two hours.

How in the fuck am I going to dance at my own wedding? How am I going to have energy to take picture and visit with friends & family? How am I going to be what the bride typically is – the life of the party? I have a long time to worry about this and a long time to get better or to get worse, to switch meds or to need surgeries. I would love to put this from my mind. I really would.

I had some of the other important questions answered by my body already – I’m clearly not rocking the high heels and in all honesty probably won’t be wearing any shoes walking down the aisle. If I do, they’ll be converse or flip flops. I don’t want to worry about tripping all over my dress so I’d really like something tea length or at least higher than my feet. But then in looking at dresses, that’s not what I’m drawn to.

I’m torn between having the wedding I probably need and the wedding I’ve always wanted. Growing up, I knew I was sick and I knew the kinds of things that could happen to me. I either never thought it would affect me getting married or I readily assumed I was broken enough (emotionally and physically) that no one would want to even entertain the idea of spending the rest of their life having to most likely take care of me.

I always dreamed of my wedding day as a big celebration with all my family and friends. I envisioned getting married on a beach or in a lush garden. I thought that my reception would be full of fun and dancing and love. I would dance all night with the people I care most about until I’m whisked away by my new husband to our hotel. Reality dictates that it is going to be much different. Reality has already dictated my life is to be far different than I had planned or scheduled or even paid for. Eighty thousand in school loans, with half being for a masters degree I couldn’t even get halfway through, can prove that. A job working in a call center for 10 bucks an hour instead of working in education or public policy or anything else can prove it too.

Arthur has done so much to rob me of experiences and accomplishments. I don’t think it is fair for it to be robbing me of my wedding plans before I even can make them.

Son of a bitch is about to get kneecapped.

Savor the Flavour

Posted on by Grayson

So last night the fiance and I went to the 14th Annual Savor the Flavour event to benefit the Arthritis Foundation. It was pretty cool, especially with it being a wine tasting.

Mmm wine.

What? Oh sorry.

I had a great time despite feeling very under-dressed, under-money-ed, and under-prepared.

I wish I could go back over my speech and that I could have made it better. I should have prepared by reading it out loud more. Oh well. I got a lot of pat-on-the-backs for even speaking so that was nice. I also am pretty sure I’ve made a few great friends as a result of going.

And also the wine.

We ended up winning a few things from the silent auction and Ron Dayne, former Wisconsin Badger and NFL football player totally initiated a hug as he was leaving.

It was really hard to come home and not feel cocky. But then this morning Arthur reminded me I had already been cocky enough by going in less than comfy clothes and shoes.

I stayed home from work for the second day in the last two weeks. I hate doing it because my paycheck just gets smaller but I just – I had no choice really. I was already dealing with a spasming back upon waking up and my knees and ankles were just killing me. Surprisingly my right knee is the most angry, but my left side is always the worst. Huh. All those things only get worse if I’m at work though. My hands are pretty poofy today too unfortunately. Blech.

Hopefully tomorrow is better. The more removed I am from the speech the better I feel, but if I speak again at an event I totally need to not freak out when I say ‘um’ or feel the need to go over my note cards really meticulously.

Oy.

A Letter to Arthur on World Arthritis Day

Posted on by Grayson

Dear Arthur,

There was one point in my life where I was fine to have you. For some reason, I thought that other kids didn’t have to deal with you, that our relationship was exclusive. I thought this despite my sister also knowing you very well because she doesn’t complain a lot and I hope that means she’s not as sick. Still, just for the pain I’ve watched her go through because of you… if you were a person, you’d be dead meat you bastard.

As I grew up though, I learned that you have hit 300,000 children in the United States. I also learned that specifically 10% of those are kids like I was, sick systemically. I now know toddlers who are dealing with you, practically babies. How dare you. They are so much more vulnerable to depression issues, disfigurement, even death. Again, if you were a person, I’d seriously fuck you up.

You’ve legitimately scared the shit out of me and my family on several occasions. Remember when you had me so sick they thought I had leukemia and was going to die within six weeks? Remember getting blood drawn every fucking day to try to figure out who you were? I remember too, trust me.

But I have also seen the miracles that drugs can do in the fight to end you. I have seen parents of little girls scared so badly that their daughters would lose their sight to you cry. But I have seen them beat you, to take back their eyesight just like I once had to do.

In the last year, I have watched you ruin relationships between people who really do love each other but can’t take you as a damn third wheel. I have watched you break up families and cause people to just stop talking about their pain because no one understands that it isn’t all in patient’s heads.

But I have also seen the dedication that my sweet fiance has to me in spite of you or because of you. I have been crying myself to sleep because of you and the havoc you reek on my body, only to be comforted by him. I’m stuck with you for the rest of my life, but I choose him.

The last year has been incredibly tough because of you. I failed a few medications and had nasty reactions to others. I had several infections, one of which is like the top killer of people in the hospital. I have had to stop graduate school – something that as a high school valedictorian type just infuriates me. I have been so depressed that I thought many times about ending my life. You have caused me so much pain I didn’t want to breathe anymore. For months, I had a hard time even walking the little bit one must. I had to give in and buy a cane. I had to admit that you, you fucking asshole, were really here and not ever going away. And seemingly like my rash you are just always there. UGH.

But I’ve also done amazing things. I performed two weddings as an officiant, one of them being my sweet sister’s. I walked one 5k and failed to finish another. I have restarted relationships that were tough for me because of you and I’ve cut unnecessary people out of my life. I have climbed around civil war battlefields and towers and hiked around on rocks. I have spoken up about pain you cause and pain you don’t cause to try to get it taken care of. I have become so much more of an advocate than I ever thought I would. I have seen one of my favorite bands play in person, and heard Hugh Laurie’s beautiful voice belt out old blues songs. I made friends because of you and your pain. And best of all, I said yes to marrying my best friend… and consequently spend the bulk of my computer time on pinterest looking at wedding ideas.

The point of this letter is to tell you that I hate your fucking guts, but that I also hate you so much that instead of wallowing in my hate I am going to go for the critical strike points. That’s right Arthur, it’s time for a blow to the balls.

And that is what World Arthritis Day is about – raising awareness and supporting research for a cure to end you. And we aren’t going to stop, we aren’t going to rest until you are over. Just remember that next time you try to fuck up my day.

One ring to rule them all

Posted on by Grayson

The boyfriend and I went on a trip for our 5 year anniversary to Dubuque, Iowa. We’ve been planning it for a little bit cause I decided I wanted us to do something special. And why Dubuque? Because it’s on the Mighty Mississip. Stop asking silly questions.

Friday was kind of the best day of my life for several reasons. I felt really good all day and that was nice. Plus I broke out a cute outfit I hadn’t worn yet and I must admit I was rocking it hard core. We stopped at the car place to get a new battery, then I got a pumpkin spice latte and then a gluten free pumpkin muffin. I also got tweeted at by one of our favorite comic makers, Mister Ryan North of Dinosaur Comics. BAM!

Oh, and I ate freaking amazing gluten free pizza at Pizza Ranch.

Mmmmmmmmm pizzzzaaaaa.

Once we got to Dubuque, we explored the National Mississippi River Museum – and Aquarium! – and I totally freaked out because there were super cute otters yawning at me and also snuggling. I had a Kristen Bell sloth moment. If you feel out of the loop, click here… though I will say it was like towards the end when Ellen tricks her and not when she’s fetal in case you were worried.

There were so many things there though! The coolest was probably between the otters, the huge abundance of turtles, and this giant fish that probably could have eaten Theron.

HOLY CRAP IT’S A FISH YOU GUYS!

There was a steam boat there too! It was pouring down rain and I was in flip flops (Theron: what else?) which meant I was slipping and sliding and my left leg is still a little sore from almost biffing it on some stairs.

We stopped in a casino and blew literally a single dollar on slots, thought it was stupid and left. (Theron says I’m failing to mention that we won ten cents… which then basically got added to our slot credits. Is that really winning?)

We went back to the hotel for a little bit before heading to Carlos O’Kelly’s (yes this is a real place) and I got a jumbo margarita!

Then we went for a walk around downtown, chasing steeples and golden domes before making our way to the Fenelon Place Elevator.

Especially at night!!!

We got up there a little after dusk and it was really pretty. It was cool to see all the places we had walked around from such a great view. We walked around the block up there and it was nice. The houses were really fancy though. We headed back to the overlook spot for a bit before we went back down.

I will admit I had kind of a feeling about what was coming. 2 different times Theron really wanted to go to the store by himself and I thought that was pretty silly cause he always makes me drive. But in all seriousness, after our walk around the block I sensed what was going to happen with my sloth skills.

Theron was talking about how it was pretty up at the overlook and then that I was pretty and I was all psssssshhhhhhhhhhhhh.

And then he was all “I like going on trips with you.”

Me: “Yeah, it’s pretty fun.”

Him: “You know what would be cool?” *cue hug from behind* “Going on trips forever with you.”

*ring box to the face*

Okay, it didn’t hit me in the face but it was all up in my face and I was all “Is this a joke? There isn’t an onion ring in there right?”

For a good ten minutes, I felt the need to double check that he did indeed ask me to marry him… as it was more of a statement and I was like freaking out kind of inside. After much kissing, he reminded me that I didn’t really answer his (not-really) question to which I replied “okay” like a four year old.

 

You totally do not have a ring as cool as this one.
There was much kissing and snuggling to be had.
The ring is sapphire with little diamonds on the side. It is so pretty. Theron got the sapphire because we met in September and because I like blue and he says blue looks good on me cause of my eyes 🙂

So Saturday we kind of alerted everyone on Facebook and Twitter (well, I did anyhow :-p). Then we did some more exploring – riding a trolley, walking along the Mississippi, staring into three states at one time, and more gluten free pizza (can you have too much pizza? I think not). We also found the Knippel store.

And it’s right next to Hammer Time!

 

And we of course rode the elevator again where I got this fancy pants shot:

My phone is fancy with panoramas!

 

And then I took this of myself because I felt like it.

Damn, I’m hot. I would want to marry me too.

Then today we hiked around – like literally hiked.

Think this times a bunch and add some stone steps too. Yeaaaaah.

 

I haven’t been able to do that in a really long time. I was out of shape and my left leg, still unhappy over Friday’s slipping, was pretty close to a breakdown. But I am very grateful for everything that happened this weekend and I can’t wait to spend the rest of my life with the boyfriend… I guess fiance?

For now, it’s time for Monty Python and the Holy Grail.

Life of a Spoonie!

 

Fibromyalgia Suuuucccckksss

Posted on by Grayson

Another week gone by and no posting. AH!

In truth, I haven’t been blogging as much due to my hand pain… which I’ve just found out is fibromyalgia after months of complaining of hand pain and pain in the hips, inner knees, neck, etc, etc, etc. I think part of the problem is I tend to see my rheumy and then her NP and then her again and so forth. I also think that my rheumy, while awesome, has some selective hearing in that she hears the complaints she thinks are vital to address and ignores the others. Kathy, her NP, is a little better at looking at the things I feel are important. I also feel like we tend to get along better and, as the wife of someone with chronic pains, she seems to understand me more.

YAY!

So I met with her on Monday to evaluate what was going on with me after a note I sent to my rheumy regarding my latest health issues and huge amount of pain. One of the things I’ve learned about Kathy is that she also appreciates my experience with my illness and so if I bring in evidence – a picture, notes, etc – she is more apt to look at them. I spent Sunday night writing up a two page list of what was going on with me, highlighting the most important things to me first. She took the time to read, highlight, and ask me to expand on my carefully worded bullet points. She then took it and made it a part of my medical file all without me asking her.

I seriously love this woman.

We went through a very thorough exam, where she meticulously checked my hands first before moving onto a whole body exam. I had some swelling in my left wrist and another lower body joint I don’t remember. However, she also checked the trigger/tender spots for fibro and the majority of them were tender – and some hurt so badly that I yelped. And I have a pretty good tolerance for pain.

She ordered a ton of labs to make sure that it wasn’t anything else and also had me get a kenalog shot right in the butt. My tests all came back clear, with the exception of my sed rate which is always high and my CRP which, until now, has never had a value attached to it for me.

I also got some gabapentin to start taking. I was nervous about this med at the beginning because I had done some research for a friend and her daughter on it. But now I definitely have different thoughts. I’m only taking it at bedtime for now and while I feel that it’s helping I a) can’t super tell if it’s helping because then I go to bed and am not using my hands and such, and b) still am waking up very groggy to the point where I’m tripping over myself and basically am asleep while trying to put myself together to drive the boyfriend to work and whatnot.

But tomorrow I will conduct an experiment. Instead of taking only 100 milligrams of gabby (my new drug street name, you like?), I’m going to also take a dose during the daytime to see how drowsy it makes me. If it is really helping my body not hurt as much, there is no place that needs to happen more than at work – where I spend the bulk of my day like friggin’ typing. Oy.

I miss my pain the way it was when I was younger. It was mainly in my lower extremities, so I learned to do more with my hands. Instead of going out to play with a swollen knee, I fell in love with trivia computer games and such things. Now even that is hard for me and it is really tough to handle. I can’t really run away from my illness the way I used to be able to. I actually have to admit that I have a disease – well, now 2 diseases – that very often cause disability. I don’t like that thought at all as a 24-year-old.

Ugh.