May Flowers My Ass!

According to a local newspaper it's rained 16 of the past 22 days in our area. I like the rain, but c'mon! It makes gardening tricky, shopping annoying, and yard sales damn near impossible.

And I need to have some damn yard sales. Shit, I'm still finding more stuff to sell as I keep organizing.

Chris and I went out around 1:30 to do errands today and didn't get home until around 5. The sad part is that we're home because we're broke, not because I got everything done. This has been a running trend the past few weeks fueled by spending 100$ on dry food alone for the animals. It lasts forever, but it's a bitch when we have to get it. You can get a smaller bag for less of an immediate investment, but you wind up paying over 50$ extra long-term. Plus we were totally out of litter, treats, and wet food on top of it. Daisy and Tux soon need their yearly exam and boosters too. Having pets and properly caring for them is not cheap. And yes, sometimes we go without so they can have what they need. This has been one of those times. We'll be caught up eventually. My list has grown shorter at least.

I did manage to get some supplies to work on a really cool organizing project for my make-up and beauty supplies. I'm making a magnet board! Painting some aluminum dark purple to contrast our bedroom wall, and then using magnets and what not I'm going to hang my make-up. If it's half as cool as I think it's going to be I'll be happy. And it'll open up another drawer for organizing clothes. I feel like I'm never going to be finished organizing this house.

Also, we got a hummingbird feeder! I've been wanting one for a long time and they had one really nice glass one on super-cheap clearance at the pet store. I couldn't resist. We need to find something to hang it from though. I'd really like to put it in our front yard. My Pop likes to chill on our front porch, and we sit out there too. And Tuxington likes to watch the birds out the screen door. I've seen hummingbirds buzz past out front before. I guess we need to find something like a pole for hanging flower baskets from? We don't have a tree there to hang it from. 

You Too Can Lick Your Cat!

This morning was my great-grandmother's funeral. Chris went with me, and it was nice weather outside for her burial. Death is so sad. It feels so strange to leave someone you love alone in the ground.

When we got home Chris took a nap before work and I worked on making lunch. He did my methotrexate injection before he left. It bled pretty much this time for some reason and it's really sore. Not too sure what that's all about, meh. After he left I got caught up on all the chores around the house I didn't get done in the morning. I may have snuck a nap in there somewhere too.

I've been brushing the animals more since it's getting warm. They are really shedding. I could probably make a pet-hair pillow. Tuxington is an obsessive groomer, so when he's shedding if I don't brush him regularly he gets super hair balls. I don't have much experience in cats and hair balls, but brushing seems to help.

I really think I should get this, and let Chris and Tux have some bonding time while I brush Daisy:



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.

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.

Pulling the Plug

Sometimes people can really surprise you. Today definetely turned into one of those days. There's a lot of people helping Chris and I squeak by right now. Especially my Mom. My health insurance alone costs more than our rent a month. When so much focus goes into simply affording survival, there isn't room left for certain indulgences. Especially not without the guilt of what other thing could be being handled instead. 

I wrote a post yesterday about our visit to Sheetz, and some of the emotions it invoked. I worked there for over six years, my life was vastly different. Including being much more financially secure. I talked about my grief related to mourning that life that's now gone. I also mentioned being sad that I couldn't get a frozen yogurt.

A Fork in the ...Toe?

Oi have I been busy. My body's been going crazy for some reason. Getting sick probably riled up my immune system good. Rheumatoid and fibro have everything hurting. MS has my fine motor skills all screwed up, shocking nerve pain, tremors, balance issues, and some serious verbal vocabulary problems.

The insomnia isn't helping much either. When I do sleep I've been having such vivid nightmares that my screaming wakes Chris up, and he in turn wakes me up.

 

It's frustrating, but I'm doing the best I can to manage despite it. I've settled in to 10-15mgs of Prednisone a day again. That's been helping a great deal with symptom management, but I've been constantly starving in result.

I really need to go get lab work done sometime very soon. My JC virus testing is way past due. I haven't gotten my regular labs done for my rheumatologist in awhile, and my PCP has wanted some labs from me for awhile now.

Chris was off on Monday; it was also his pay day. I didn't really press to run errands though because I knew he's been feeling a bit run down since he's been sick. We didn't really have anything of urgent need either. We filled the gas tank, hit up the bank, grabbed some lunch and went home. Spent the day together playing video games and what not.

I've been super busy. Undecorating from Christmas, working on some little projects around the house, and a ton of fun stuff from the wedding is showing up. We got videos from my Uncle, pictures from the photographer, and a lot of memory keeping to do! The pictures are gorgeous. It's hard to decide what to put where.

Yikes!

I've been seriously slacking in the blogging department. In my defense life has been crazy. Shortly after my last post Daisy was attacked by another dog. She had to get emergency stitches. She's healing up nicely at this point. Chris was also in the ER for kidney stones.

I've taken up some major redecorating and reorganizing projects in our house that have had me pretty occupied. While I should be documenting and sharing them with all of you, it's been pretty exhasting just getting it done.

My rheumatologist is switching me back from Rayos ($12k+ a month) to prednisone (a few bucks a month) at my request so I can once again try to cut my ties with steroids. It's not easy, and I've found that now my sugar is crashing again in the middle of the night. Nothing can ever be simple.

Tuxcasso?

I managed some determination to at least get the dishes done last night, and Chris was kind enough to cook dinner. Now of course, it looks like I did no dishes. I got a whole lot of nothing done yesterday. Today seems a bit more promising, but I'm still not back to what I usually do in a day.

Relaxing when I feel like garbage is really hard for me. I feel like I need to tough through it. Show the disease who's boss! All that really does though is make me feel like garbage for even longer.When I just rest though I wind up getting anxious about all the things that aren't getting done that are going to pile up into a monstrous disaster. 

Chris is really great about helping me with things that I need done. When it comes to regular chores though he's the King of 'It can wait till later'. He doesn't understand how the piling recycling, dishes, and laundry lying about cause me anxiety. Things are easier for me to accomplish in small doses. Mountains of shit to do all at once make me sad. So as I watch them turn into mountains it makes me anxious.

But I'm trying to let it go until I feel back to normal. Trying.

White Flag

Tux is extremely talkative today.

He's usually only this talkative when he wants something, but he has all the basics so I'm not sure what he's up to.

He was laying on top of Daisy earlier giving her a bath. It was adorable, and in his defense she really does need one.

I woke up this morning feeling awful. I've been down to 10mgs of steroids for a little over a week now and I assumed it would get better with time. Instead though it's getting worse.

My joints were all ridiculously stiff and painful this morning, and it's not letting up. I don't want to feel like crap for our wedding and honeymoon so I surrendered and went back to 15mgs.

Honestly, feeling like this makes me worry how I'm ever going to tolerate totally getting off of them. Which sucks, because I really want to.

The way I'm feeling today not much is going to get accomplished.

Snowball Fight!

Steroid withdrawal is kicking my butt today. My joints and back are hurting something fierce. There's so much I want to get done but my body is just not agreeing.

Finally made myself something to eat. I made corned beef hash and dippy eggs with toast. I somehow managed to burn the bottom of my eggs, but I was hungry so it didn't really matter.

I have two baskets of laundry to put away and I'd really like to finish the bathroom closet at the very least, plus I have forty more wedding programs to do. I just don't see it all happening.

Just took a pain pill an hour early, which I rarely do. Hoping that will maybe catch up with my pain level enough that I can get motivated to get some stuff done.

In my organizing yesterday I moved my bedroom touch lamp from the top of the one bureau onto my nightstand. Last night Tux turned it on not once, but twice. And not on the soft light setting either. He committed and turned it all the way up to prison escape neon bright.

Have I mentioned lately that he's an exceptional bastard?

Anywho, it seems Chris is finally done playing football so I'm going to procrastinate my day some more and play Frozen Freefall Snowball Fight!

Possibilities

So, I never did figure anything out to eat last night. In fact, I still haven't. Chris ate the other half of his cheese steak we got the night before. I didn't feel like cooking for just myself that late anymore, and couldn't think of anything easy.

I woke up at like 4am starving and remembered we got burritos the other day that we never wound up eating with our potato skins. What the hell, I thought, and went out to make one. I discovered like a moron I got myself hot burritos. I don't do super spicy stuff. Mild spice, sure. Super hot stuff gives me the hiccups for hours though. Fuck that.

Damn my lack of observation to hell.

I went back to bed defeated.

I've since been up for a few hours doing things around the house. Chris is still sleeping. I still haven't eaten, I really need to do that.

Moon Face

Chris and I worked on our wedding programs tonight. I somehow only got enough card stock to make eighty, so I'm going to have to get another pack and do some more tomorrow.

I was glad when we were done with this batch. Even with Chris' help it was time consuming, monotonous, and tiring. I did a couple on my own while he downloaded a free Frozen game on the Xbox One for me. It's something like Bejeweled. It's pretty cool. Then he started putting them together and I lined up the pages and stapled. They still need to be cut down to size.

Daisy kept climbing onto Chris' shoulder like a parrot while we were trying to work. Then her and Tux kept making themselves comfy on our page piles.

It wasn't exactly helpful.

It's 11pm and we have yet to make a meal today. We snacked on some chips earlier, but that's been it. The days are going by too fast lately. Way too much to get done.

I've been tapering down on steroids too which I think has been playing with my appetite. A little over a month ago I was up to 60mgs, and I'm down to 10mgs. My joints aren't very thrilled, but I'm determined to get off of it this time. Probably not going to drop below ten until after the wedding though. I don't want to risk feeling crappy for the wedding.

I've learned from all of the times I tried and failed at getting off Prednisone that you must do it slowly.

While Prednisone does a great job at covering up some of the symptoms from my diseases, the Cushing's Syndrome side effects got to go.

My vision's been pretty bad off and on the past few days. Worried my MS is misbehaving with the lower dose of steroids. Hopefully it will calm down. The Xeljanz seems to be working surprisingly well for my joints this time around. Soon time for another dose of Tysabri already.

It's amazing how understanding Chris is with all of it.

I suppose I better figure out something for us to eat before I fall asleep! Haha. Tomorrow shouldn't be super busy, but Thursday we have a lot going on.