Surviving

It's been a rough couple of days here. Work has been busy for Chris. Finances are tight as the animals needed a ton of items replenished this week. I saved about 50$ with coupons though which helped. My immune system is up to no good. I've been noticing small things the past week or so layering on top of my recent extreme fatigue. Missing when I go to grab things, frequent stumbling, mixing up words, dropping things. While it's sparse and barely noticeable to anyone else, it all stands out like an emergency siren to me. Symptoms of my MS are generally rarer anymore unless there's a trigger like heat, and they've been increasing in frequency and severity all of the sudden. Last night when we went to the store I developed a bad tremor in my left hand while pushing the cart, and I stumbled about six times. Then I later developed spasticity in my right hip and it has yet to give me relief. I'm struggling with stairs, and limping when I walk. I'm hoping with some rest it will all calm down, but it's starting to look like it's adding up to a relapse. If it continues to get worse in severity I'll need to go see my neurologist and get on a solumedrol drip before I lose my ability to walk all together. As much as I hate solumedrol, I enjoy walking. I'm trying really hard to be optimistic that it's just a passing exacerbation from stress or whatever, but as the frequency and severity builds I'm soon going to have to be a realist.

Punch the Sun!

Today Chris and I have been married for six months! And some how I still haven't found a home for some of his stuff, hahah.

But no seriously, wow! I am very very lucky to have found him. To get to experience love in this degree. To have the luxury of such confidence and safety. It's something I wish for all of you to experience. I see friends celebrating huge milestone anniversaries, and can only imagine the things we will have experienced in that time.

Friday the 13th!

Chris' birthday kicked my ass. I'm not particularly certain why. It's not like our plans were extremely physical or anything. I've been paying the price regardless though. I've been fighting major fatigue all week, and pep talking myself into doing anything beyond basic chores.

Yesterday I spent some time working on one of my closets. I have some bags of stuff in it that Chris brought with when he moved in that I still haven't found a home for. One of them was all paperwork; which I spent yesterday sorting between our important papers tub and keepsake box. The other is all electronics and cords. It's been my looming project of the day today, which I've only slightly dented. I've been working really hard on getting our entire home organized and free of unnecessary clutter.

Last night I made grilled chipolte chicken and swiss cheese sandwiches for dinner and we watched The 5th Wave. It was actually a really good movie. We stayed up way too late watching it. It's one of those movies that makes you think.

Chris' Birthday - 2016

Yesterday was my husband's birthday!

Holidays are a big deal to me. I need very little reason to celebrate with those I love. And a celebration all about the man I love most? I mean c'mon.

Monday afternoon I spent getting some cards ready to mail and getting my husband's birthday card ready. I don't know how to just give a plain card. It's so impersonal.

So I broke out my sticker box and got to it. Chris thought the stickers I put in his birthday card were actually part of the card! Haha, I thought that was sweet. A card I was sending to a particular friend of mine is a long over due Christmas card. The post office has failed me twice now on this. It better not fail me again. I had trouble getting a card to another person too. Different states for each of them.

I still have a few more cards to make and send out, but I felt productive nonetheless.

Popular Much?

I was tinkering with my Google+ profile for a bit last night. I've never really dedicated much time to my Twitter or Google+. Facebook's always been good enough for me when it comes to social networking.

Google+ integrates seamlessly with my blog and other Google products and features that I take advantage of. So, I figured I really should make some use of it. It's really great for sharing my blog posts and categorizing them. I've spent some time off and on prettifying my Google+ profile and filling it out after all these years.

I decided to tinker with it a bit last night when something caught my eye.

94 thous... - excuse me?!

Happy Mother's Day!

Chris and I stayed up until almost 5am this morning. We got up around lunch time and ran up to Hamburg to take care of some errands. Our first stop was the pet store whereupon entering I was greeted immediately by swarms of squirmy puppies up for adoption. I wanted to herd them all into our car. I resisted though.

My Uncle Keith stopped by with a birthday card for Chris. It was really cute and funny. Drop a guess in the comments as to what the inside says!

Chris changed the oil in the car with my Pop when we got home, and I struggled to stay awake. I've been ridiculously tired all day. I'm fighting sleep just trying to write this blog. I'm trying not to give in and nap in hopes that I'll be able to sleep decently tonight. We'll see.

Diets are Bullshit!

Diets are bullshit.

Yes, that's right. I said it, and I'll continue saying it.

As an over-weight woman with auto-immune disease and metabolic issues, that's continuing to lose weight, I'll still say it.

Diets are bullshit.

Now, don't get me wrong. I have nothing against being plus sized. If you're happy with your body, health, and the weight you're at live and let live! Shine on. But if you're unhappy and trying to shed some pounds, dieting is not the answer.

This is how Google defines a diet:

Go the Fuck to Sleep!

Today hasn't been very exciting. Chris woke up feeling better after being sick for less than a day. I'm still fighting it off on day number four. I'm almost back to myself though.

I did my regular chores around the house and a little bit towards my organizing projects. There was plenty I should have gotten done, but I just didn't feel like it. I have a billion messages on the answering machine I need to return. I totally forgot about my port flush appointment and missed that yesterday so I have a concerned message from the infusion nurse.

Ports should be used at least once a month. Which was easy peasy when I was getting monthly infusions. Now I get two infusions every four months, so if I'm not getting labs drawn I have to schedule a port flush to keep the works from getting gummed up. When I first got my port in it was constantly clogging despite constant heavy use. My body was just not a fan and kept trying to 'heal' it. It's been working famously lately though. Sitting around for a few hours waiting for Activase to hopefully work isn't much fun. Nor are the nosebleeds I usually get afterwards.

Mariana Trench

Last night we made use of some of the bass we caught for dinner. I made a long and wild grain rice and sauteed mushrooms, onions, red pepper, and garlic in lemon juice, salt, and pepper. We stuffed the bass with the mixture and baked. It was pretty damn good. 

We ate it with some bruschetta Chris brought home from work.

Frail, not Whale!

Ugh, one of my friends shared this meme tonight. Everyone's quick to chime in and laugh.

Everyone that isn't affected by this on a regular basis that is.

Being chronically ill has taught me a great deal in life. One thing is to be kind in judging others.

We all judge. It's a fact of life. I've learned to not be so quick and harsh in my judgements, and if I cannot be kind in a needless judgement, to be silent.

My diseases greatly affect my ability to get around. Multiple sclerosis affects my balance, gait, energy level, and my heart. Rheumatoid arthritis makes my joints feel like glass is crunching inside of them with each movement.

A little less than a year ago I had hundreds of blood clots in my lungs and wasn't supposed to attempt shopping after I was released from the hospital for months. I did it anyways.

And I did it without the assistance of a scooter. Much to my husband's dismay.

Why? Because people are fucking assholes. I would rather struggle walking through a store half dead, struggling to breathe, with vertigo issues and extreme pain than deal with all of the fucking assclowns that are going to stand there and judge me for being a 'lazy whale' because I just so happen to be overweight as well.

Forget the fact that I've lost over fifty pounds this year, or that my weight is a result of my diseases and medication.

All that you will see, is that I am fat and on a scooter. Nothing else will matter. You will judge me, and I will be that lazy whale.

The pain of that judgement is so disheartening that I would rather physically hurt and endanger myself while buying a gallon of milk, than accept the assitance of said scooter.

So next time you laugh and share a post like this take a second to think of all of your friends and family that may be struggling with a similar issue. People you may never see use a scooter for assistance. People that really should, but refuse to out of shame.

People that struggle due to your cruelty and judgement.

Maybe one day I'll live in a world where people won't laugh and whisper because my body betrays me and I need help, but today sadly is not that day.

You Never Know Who's Watching...

I haven't blogged in quite some time.

I've been busy living life and adjusting to my new normal.

Even though I'm not quite sure what that is yet.

I started a new chemotherapy in March that has worked wonders for my ability to function day to day, yet my inflammation markers continue to climb up and up.

Today's actually the crappiest I've felt in quite some time, but I'm hoping its just a result of over doing it. I do that a lot, still. Learning new limits is hard.

I got a long awaited tattoo.

Did some fishing with my husband.

Expired Patience

Nothing wanted to go right today. Chris and I had a ton to get done today. We started off going to see our accountant and sign everything to file our taxes. The e-system went down so she's not sure when exactly she can get them filed or when we'll get our refund. Next we went over to Wyomissing. I needed to pick up my oxy script and get some Rasuvo samples. I haven't re-met my out-of-pocket max yet on my health insurance policy, and a number of my meds are really expensive. Rasuvo's one of the most effective meds I take, but it's also not cheap. A month's supply clocks in at $200 despite insurance.

When I realized how pricey it was going to be to refill I contacted my rheumie to see if he had any sample pens left. He did, and put a months supply aside for me to pickup. Last week when I went to get my labwork done, the labs from my rheumatologist were still in my maiden name so the lab wouldn't run them. They had to call and get a new lab order, and I followed up when I got home. I had to request medical records for Jefferson and asked them to make sure my name was switched properly in their system. She got my oxy script for me, and it was in my maiden name. There's no way the pharmacy would fill it, especially considering my insurance is in my married name and the laws on narcotics are super strict. I was annoyed, because I took care of this, and here it was still screwed up, but at least we hadn't left before I noticed it. I asked them to fix the script, but it turns out my doctor was out on vacation for the next two weeks. He goes on vacation a lot. There's so many rules for narcotic prescriptions now to discourage abuse and drug-seekers. But it really hurts real patients that have a legit need. You're only really supposed to get narcotics from one doctor. The pharmacy's weird about filling narcotics from more than one doctor, other doctors are weird about writing them. It's a pretty big deal. A pretty big deal that was about to become a pretty big problem for me. While I did nothing wrong, crossed all my t's and dotted all my i's, the doctors office dropped the ball. While I'm not addicted to oxy, I am physically dependent on it by this point (Yes, there is a huge difference. I am physically dependent on my depression medicine as well for example). If I suddenly stop taking it I will get really sick. I'm sick and in pain enough right now from my steroid taper. I started to panic, and get really pissed. After the situation was explained to the on-call they agreed to rewrite the script in my married name, but I'd have to come back Friday for it. Annoying, but it could have been much worse.