Weekly Progress

I got my first weekly progress report from FitBit. Not bad, if I do say so myself. I've been working really hard on shedding the weight and getting my strength back. Ultimately, I'd like to be strong enough to do Christmas in NYC again. I haven't done it since before my accident, and it's one of my favorite things to do. It's all walking though.

A Spoon Full Of Sugar...

I've been doing TONS of stuff lately. I've been a busy busy girl. Great for me, not so great for my blog. By the time I actually sit I'm generally way too tired to do much of anything. I've actually been sleeping lately too. Crazy, I know!

But, I've been committed to getting this baby caught up! So at the very least I'm pumping out some little blogs before I fall-out, rather than a long catch up. If anything, I am adaptive!

I'm currently armed with coffee and a can-do attitude! I've had a really scattered morning. I got allergy testing yesterday which was terrible. I had to get the scratch test and injections, because my control didn't work on the scratch test, and then I wound up reacting to everything and my immune system freaked out. I'm allergic to pretty much everything but mold. It's pretty bad, and I'm not quite sure how it's even possible considering all the steroids and immunosuppresants I'm on. I'm going to try allergy shots since my insurance is willing to cover it in full, and there's a chance they could help calm my psycho immune system down.

It was all riled up last night from the testing and I felt super shitty all night. I hid in bed and slept. I'm still not at 100% today. I've been all over the place trying to find something that I feel well enough to do. I worked on my magnet board for a bit, but ran out of magnets. Started taking a walk, but by lap two decided I really wasn't up for that yet, and it seems I decided just in time as it's pouring now. I did my chores around the house, but that didn't take long. So now here I am working on this!

I finally got my garden going! It looks great. It started out looking like this:

But, after a ton of hard work it looks like this:

It's something I've been wanting to do for a long time, and I'm incredibly proud of it. I never would have been able to accomplish this last year.

I have even more pepper and tomato plants in my Pop's garden out back. I ran out of room.

I saw a quote that I think really encompassed some of my feelings about gardening.

Gardening is a huge investment, and sort of ties you down to the area you're in. I think there's a sense of home attached to it, as well as future. It's a long term commitment for reward.

We have a ton of interesting plants along the woods-line of our property. I know what some of them are, but not all. I went out the other day and took pictures of a bunch of interesting ones. I want to try to identify some of them, and some I just took pictures because they're pretty. I'll put a blog up full of them in the future. I need to finish editing them.
I've been nursing a wicked sun burn. I set up a yard sale outside the other day, and it was cloudy out so I didn't bother with sunscreen. Yeah, terrible idea. I learned my lesson on that one. My skin is so sensitive from all of my medicine too which doesn't help. I had nausea and chills from it. Not my idea of a good time. I've been seeing a lot about the woman with MS who got over-heated outside a few days ago and wound up dying. Scary shit, and a brutal reminder that even though I'm feeling better I can't under estimate the heat and what it does to my diseases.

It's supposed to be cooler out the next few days which I'm looking forward to.

Our hummingbird feeder is becoming a busy place! I see a hummingbird there about once an hour now. It's pretty cool. Tuxington enjoys watching them. And by enjoys, I mean he wants to eat them.

Anyways, time to get busy again. I shall leave you all with this educational food for thought on sugar intake. I quit drinking soda awhile ago, and that alone has made a huge difference in my calorie intake. It's ridiculous how much sugar is in it!

Harmony Bear

Yeah, yeah. Save it; I know. I'm a slacker. I've been meaning to blog all week. And once you get behind on something like this every passing day makes it harder and harder to catch up. Which makes it subsequently easier and easier to procrastinate. It's a vicious cycle. Plus I've been on the move. I've been a busy girl. I haven't even been sitting enough to write this damn blog lately.

Today's been a bit of a lazy day though, so it was about damn time I do some writing. I have a wicked sunburn that I'm pouty about, and I finally slept decent for the first night in weeks. My walk was cut short by a torrential down pour, and I have yet to get back out there. I'll be amazed if I come in under my calorie goal today, especially tracking wise because I have my FitBit on the charger for awhile. Shit happens. Lazy days that are the exception to the rule won't wreck the goal.

Memorial Day

Every year there seems to be confusion about just what this holiday is all about.

Many businesses close, a number of people get the day off of work. We have picnics, parties, fireworks. Get drunk, open the pool. Light up the grill. For many it's the official start of summer.

Memorial Day is in honor of all of our troops that gave the ultimate sacrifice for our country. All of the sons, daughters, mothers, fathers, brothers, sisters, husbands, and wives that didn't come home to their loved ones.

I can't imagine the pain of that loss.

No Rest for the Wicked

So, my FitBit is pretty damn awesome. I synced it with my FitnessPal app that I've been using off and on for a few years. I'm suddenly a calorie burning machine! But no, it's pretty awesome. It holds me accountable for burning more than I take in, and keeping moving.

I love that it tracks my heart and my sleep for my doctors, and helps motivate me with badges and bullshit. I don't see a 10k step badge in my near future yet though.

I pulled some tickers and badges from the FitnessPal app to put on my blog so all of you can see my progress on my journey as well! That should help hold me more accountable too.

I didn't take an Ambien last night, and as usual lately I didn't sleep for shit. Now you can all see just how fabulously I sleep.

Mail Timeeee!

What a day! I should have taken Ambien last night again. I didn't sleep for shit. I was up most of the night. I gave up earlier than usual and got up and got started on my chores for the day awhile. Around 9am I ran out with my grandmother to the post office and the pharmacy.

The post office was exciting! I had tons of coupons in the mail, my FitBit, and my HDMI splitter came already! I also got a giant pack of paper work to fill out for the digestive diseases doctor. Not looking forward to getting that done. Not doing it today. I'm too tired to focus. My appointment isn't until August, but I need to get it done awhile because they have me on their cancellation list and it's not anything that can get done last minute.

When I got home I cut up and sorted the new coupons, and went through and tossed some expired ones I had in my bag. 

Bloomin' Bullshit

Yesterday turned into a busy day.

My Pop's been socializing with the construction crew that rebuilt our local bridge pretty much since day one. He watches them work and bullshits with them. They've been working on black topping the past few days, and yesterday he was talking to them about how he wants to get stone for our drive way because it's getting such bad dips and holes. Didn't they bring their equipment over and fill in and tamp down all of the problem areas for free. It was really nice of them.

Fawn

I saw this this morning and I can totally relate to it:

Chris says that's giving my grace too much credit, dick.

A Different Person!

When we were in Redner's yesterday looking for sauce for our wings, a lady approached us and asked if we remembered her. My response was, 'No, but that's not saying much. I don't remember any one.' Hah! I looked to Chris for respite and he looked just as confused. It turned out she was the employee of a local dollar store we go into occasionally. She apparently quit a few weeks ago. Once she said that, I could place her. She then said when she was first approaching us she noticed Chris right away, but until she saw my face she thought he was with a different woman! Haha. Apparently I've lost that much weight. It was pretty flattering and she went on about it for awhile. No one else around me has really mentioned my weight loss at all. I'm usually the only one that brings it up. So, it was nice encouragement. I mean, sixty pounds is a lot, but sometimes it's easy to lose the sense of accomplishment when you look at how far you still have to go.

After talking about taking advantage of sales and loyalty offers last night I decided it was time to actually use my Wal-Mart app. I've been saying that I wanted to try their 'savings catcher' since this past October. Hahaha. My Aunt has saved like 100$ with it already. I'm going to try to add my Mom and grandmother's receipts too since they don't bother with technology. It's really easy to add the receipts to your account. You can either scan the QR code or you can type in the barcode number at the bottom. If anything was on sale/cheaper anywhere else they give you the difference that you can accumulate.

Iced Coffee

Our local grocery store recently started carrying a new brand of coffee in their milk section called StoK. It's a cold-brew black coffee with a slightly sweet variation as well. It seems that they make even more variations than my local store carries right now.

It's amazing.

It's everything I've been looking for in an iced coffee. Since it's black cold-brew you can make your iced coffee however you damn well want. Strong, light, add flavor, whatever. Chris and I generally like our iced coffee pretty differently so it works for both of us.

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. 

Split Combo

It's been a quiet week as expected. I've mainly just been doing a ton of cleaning and organizing projects. Tackled the entertainment center again last night which had me ridiculously frustrated. I hate wires, a lot. I need to get an HDMI splitter at Best Buy this weekend so I can have all the devices plugged into the TV. Finally set up Chris' PS2. Once everything is all plugged in I want to tidy up the wires. I still need to find a VHS player too. Maybe I'll see if Best Buy has one cheap. The internet is making it look like you can only get combo players, and I need another DVD player like I need a hole in the head. Plus they're way over-priced. I was expecting to find a simple VHS player somewhere for like twenty bucks, bah.

Getting a FitBit is very much on my to-do list as well, it would really help me track things for my doctors. I need to have another yard sale. It's so hard to try to pick a weekend to do it. It's so much to drag down from the attic if the weather's going to suck. We've had non-stop rain here lately.

My Mom's down for work for the weekend as usual. Scotty is here too. He looks very handsome with his haircut. My Mom sent me this pic a few days ago, but it doesn't do it justice.

He's really growing. I may have to kidnap him. He has a really adorable personality.

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:



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.

Static

Things are really rough for me right now. My doctors have me tapering down off of steroids so they can see what symptoms all flare up exactly. They're hoping to figure out if I possibly have systemic vasculitis, and how to treat me well enough that I don't need steroids to function. While they're great for calming down a messed up immune system; steroids are really bad for you and come with a myriad of side effects such as thinning bones, muscle wasting, organ damage, and weight gain.

I dropped to 10mgs, my lowest tolerance on Monday, and by Wednesday I could feel everything start to flare up. My entire existence hurts. I emailed my doctor and let her know that things were flaring up already and she messaged me back that she put in a standing lab order to evaluate my inflammation markers that she'd like me to get done weekly before our Monday follow-ups on my taper. I got it done today in hopes that she'd have it in time for our appointment Monday morning. Within a few hours she emailed me, lab results were back already. My inflammation markers almost doubled within a few days. Higher than they've tested in months. I expressed that not only was I not kidding about feeling like shit already, but that I was quite serious about not being able to get under 10mgs of Prednisone. While she said she didn't doubt me (she yells at me for under exaggerating), having the frequent labs to track the process for Jefferson makes it even better.

The Cycle of Shitty Self-Care

Yesterday I had my Tysabri infusion. I'm down to 10mgs of Prednisone a day, my lowest tolerance. And it's methotrexate day.

To say I feel like garbage is an understatement.

I've found that the days you need proper self-care the most, are the days that it's the hardest to do.

Last night I wouldn't even get myself a drink out of the fridge because the juice was behind a whole bunch of crap, and I just couldn't be bothered to move it all.

Feeling like crap literally sucks all of your motivation like a vampire.

While doing things that wind up making you feel even crappier isn't very smart, it just happens. I forgot to take my night time meds last night, in which was half of my steroid dose for the day. I woke up this morning feeling absolutely terrible. I took my morning dose and it took about two hours until I could stand myself again.

Forgetting to take a med I'm already sick from tapering is not good, but when you're not feeling well these are the things that happen.

Nutrition goes to hell because you don't have the energy or pain tolerance to cook a decent from scratch meal.

Dehydration happens because you don't feel well enough to even go get yourself a drink.

Med doses get skipped because you fall asleep early and forget.

Muscles get even stiffer and sorer because it hurts too much to move.

It's an ugly ugly cycle. One you have to do the best you can to control. I've learned to ask for help. Chris is in the kitchen right now cooking dinner, which he rarely does. You have to learn to leave other things go. Some things really just don't need to get done right now.

What do you do to help maintain self-care when you're not feeling well?

Schwoopieeeeee

I'm a giant child from time to time. Being able to have fun and laugh is important. We were at the dollar store the other day to pick up animal cookies and crackers. They've been my go to snack as of lately. They're cheap and not all that bad for you. A coin machine thinger caught my eye that had 'rocket balloons' with 'schwoopie sound effects'.

After nudging Chris and insisting he look at it, he bought me one.

He blew it up for me, and the results were hilarious. It takes a ton of lung power to blow it up for a few seconds of laughs, but it was totally worth it. Especially since I wasn't the one blowing it up, hah. The animals were freaking out about it. It eventually broke and I was pretty sad, but it was the best fifty cents we spent in awhile.

You can watch some funny videos I took of it below!

Schwoopie Balloon!

Posted by Trisha Amanda Archeval on Wednesday, January 27, 2016

Schwoopie Balloon!

Posted by Trisha Amanda Archeval on Wednesday, January 27, 2016

Schwoopie Balloon!

Posted by Trisha Amanda Archeval on Wednesday, January 27, 2016

Schwoopie Balloon!

Posted by Trisha Amanda Archeval on Wednesday, January 27, 2016

Snowmageddon!

The past few days have been crazy, and I've been slacking on writing a blog. Friday night started Blizzard 2016, otherwise known as Snowmageddon.

Chris and Daisy kept an eye on the progress outside Friday night.

Tux experienced his first snow, and snow ball. He was not amused. He wanted to murder it.

Daisy and him kept an eye on the snow from our TV room window.

Gotta Get the Milk!!

Today was a SUPER busy day. I had a huge to do list from my doctors and I was determined to make a dent in it. 

Chris and I stayed up until about 4am, our sleep schedule is all screwed up. I was fasting since ten so I could get all of my labs done today. Chris attempted to hide in the kitchen to eat yogurt because he felt bad I couldn't eat.

By six my sugar was tanking bad. I woke up drenched in sweat and it was in the low 70's. They put me on medication to lower my glucose levels because the steroids were making it go so high. Now that I'm on lower doses of steroids though I have to snack constantly or my sugar crashes. That doesn't mix well with fasting.

As soon as the lab opened we headed up to Hamburg to the Reading Hospital satellite lab to start getting stuff done. I had lab orders from four different doctors. Jefferson orders and what not needed to be manually entered into the computer, and then she had to sort through between all the orders for duplicates and put in a bagillion diagnosis codes. It took forever.

Phlebotomists aren't allowed to access my port, you need special training, so she had to hunt around and find a vein. My veins suck and blow really easily. I'm sure partly from heavy chronic steroid use, but also maybe because of this whole vasculitis theory. The first few tubes went okay, but the last three the blood was flowing so slow. It was painstaking until she could get enough to complete the orders. The poor million people in line behind me were probably all 'Gawrd!'.

After the blood draw Chris stopped at Taco Bell and grabbed me two breakfast taco thingers from their value menu before I died. I nommed on them on the way to the Quest lab in Hamburg. I finally got my JC titer drawn that I'm super overdue on. It has to get run by Quest because Biogen (the drug company that owns Tysabri) pays for it and uses that lab specifically. The lady that works at the Quest is really good. She can always find a vein on me no problem. When she saw my other stick she was all '???' and I explained I had just had other labs done. She tried to convince me to get my routine labs done there, but I like keeping my labs all in the Reading MyChart system. Having as much accessible in one place as possible is crucial when there's so much going on.

After that we headed home for a bit. I made a bunch of phone calls and emails to my local doctors, tried to follow up on insurance approval for Tysabri this coming Tuesday, and then Chris and I went back to bed for a little bit. We had only slept like two hours so far by that point.

I couldn't sleep very long like usual, but Chris was sleeping really good. I called my grandparents to see what they were doing and they weren't busy so I snuck back out with them. I dropped off samples at the Reading Satellite lab in Leesport, and then got some X-rays done for Jefferson. I went along with my grandmother to the grocery store while she stocked up necessities. Which reminds me of this funny video my Mom sent me the other day.Don't  react like this guy:

Just a heads up, there is a chance of snow tomorrow during the day. Don't react like this guy:
Posted by 92.9 The BULL on Tuesday, February 3, 2015

When I got home I made some phone calls to the records release department at the hospital to get some discs made up for Jefferson that I have to pick up tomorrow. The PCP called for Chris; he has to go back in on Monday to follow-up on this damn infection he has. I'm hoping they give him a note to return to work when he's there, but they think he may need another round of antibiotics. I should find out tomorrow if I'm positive for it or not.

Chris stayed up and played Saints Row: Reelected and I laid down for a nap. The busy day had me pooped. Our schedule is so screwed up. Now we're both up watching Netflix, and trying to plan our day tomorrow. I need to make a meal too. Tomorrow I have to go to the hospital and pick up records for Jefferson, and I'm hoping to go to the Social Security office. I still haven't changed my name there since getting married. It sucks that Chris is missing work, but I'm trying to take advantage of the time he's home and get stuff done. And we get to get snowed in together in our first blizzard this weekend!

I have to wait for insurance approval of my MRIs and then I have a bunch of tests I need to try to schedule all on the same day in Philly. That'll probably take about two weeks until I hear back about that. I haven't been up to 25mgs of Prednisone for very long, so we dumped me back down to 10mgs today. Anything under ten is when things seem to go to complete shit. After a few days of being back down to ten it'll be time to start tapering lower. The longer I'm under ten the sicker I'm going to get. It's going to start to get rough after awhile.

One day at a time. Hopefully some temporary discomfort will turn into permanently getting better.