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.

Mourning the Alive

It's no big secret that I've been a little emotional lately. Hormones, multiple sclerosis flaring, pain, and stress are all taking their toll.

We made a run out to the lab to drop off samples, and decided to stop at the rebuilt Sheetz in Shoemakersville on our way home to check it out. Neither of us had been there yet since it reopened.

It's really nice. They have an indoor and outdoor seating area, an awesome soda and milkshake bar, the new MTO is snazzy, and they have a soft-serve icecream and frozen yogurt section with a ton of topping choices.

The increase in steroids has me starving but we're flat broke. I wanted a frozen yogurt bad and had quite the sad that we couldn't get one. Then I noticed a sign bragging about their wage increase and had the realization that if I was still working I'd be making over $50k a year by now.

I can't even afford a damn frozen yogurt to satiate my Prednisone fueled hunger.

Next thing you know, the tears started welling up. It really caught Chris off guard as he was trying to figure out what happened. Trying to explain what was wrong made it that much worse.

Sleeping with Multiple Sclerosis

Tried to go back to bed last night after I wrote my blog hoping that would wind me down enough, but it didn't work. I had a rough night trying to sleep. I was up and down I don't know how many times to pee, tossing and turning. When I finally did sleep it wasn't for long before I was awake again.

Multiple sclerosis messes with my sleep bad. I had a sleep study done last year because of it. I got absolutely no REM sleep, and woke up hundreds of times throughout the night. i wish that was an exaggeration. While I have no sleep apnea or anything of that sort, sometimes my brain just doesn't want to sleep. There's a ton of things that happen that let your body sleep, chemical changes, etc. Because of where my lesions are on my brain things don't always happen properly, and then I don't get to sleep very well. Everyone's MS is different. Hell, sometimes I think mine changes day by day. One thing that remains the same though is that it loves to mess with my ability to sleep.

Between a Rock and a Hard Place...

Bah. I am so worn out, and as a result I've been so lazy. The little bit of stuff I am getting done around the house is taking some tremendous inner-dialogue pep-talks. My Tysabri infusion didn't make my stomach as bad as it had been this time. Thankfully so, the increase in steroids has me starving. I'm constantly hungry. It did make me itchy as all hell though. So.itchy. That's annoying.

I've been getting some serious nerve pain in my right hip/leg/foot the past few days. This is the same hip that I broke in a car accident a few years ago and had major surgery on. I'm not sure if the nerve pain is a result of the slow nerve regrowth reaching a certain point after all these years, or if it's my MS. I hate things like this that could be from multiple things. Especially when there's really no way of telling which. If it is from my MS I likely have a flare starting, which is bad news. Last time I had nerve pain in my leg like this that turned into a flare I fell down a set of stairs randomly when my leg went numb.

Monkey Business

Chicken noodle soup last night got really good.

Got up this morning and did a few things around the house. I felt like crap. Being sick is kicking my butt. Shortly after I got up I headed off to my Tysabri infusion with Chris. I took some of my homemade candy with for the staff.

There's a new girl during my infusion time slot. She's pretty cool. Has a lot of stories. She works two jobs still, one full time and one part time. Her MS isn't very advanced yet. She's been doing Avonex, but started to have some cognitive decline and switched to Tysabri to nip it in the butt. Plus Avonex came with weekly flu symptoms. She has eight dogs, they're small, but still! She also has two mini-pigs. I don't know how mini a sixty pound pig is, but they're cute. She used to do exotic wildlife rehabilitation and had mini-deer, various types of monkeys, etc. She's full of stories, so it'll be pretty fun to have infusions with her. She's actually one person that I could see myself getting along with. Most of the others I don't have much in common with besides MS.

....Not Even a Mouse

When Chris got home from work on Saturday we had Christmas part three! We headed over to his brother Clyde's house. Clyde was one of his groomsmen in the wedding. We took over their presents and hung out for awhile.

Clyde and Janelle gave us a pretty ornament for on our Christmas tree, and a handmade candy cane pin. Both were really pretty.

I even got to see two of my new nephews for a bit! They had lots to say about Star Wars. I really need to watch the movies so I have a clue what any one's talking about. I haven't seen a single one yet. Everyone really liked the candy I made too!

We hung out there for about two hours, and then headed home. Chris and I finally got the WiiU set up, and I finally got to work on writing these blog posts. We stayed up until about 2am. Him playing video games, and me watching as I blogged. I fell asleep a few times in between though.

Happy Sammich Day!

Today was as busy as expected, if not busier. Started off the day being sabotaged by the stupid time change. Forgot to change the time on our alarm clock, so we got up an hour too early for my infusion. Considering how late we went to bed, I tried to go back to sleep for an hour but was not successful.

Started undecorating from Halloween. Ran up to Hamburg and stopped at Dietrich's Men's Shop. We lost our ring bearer very last minute, and we had paid for his tuxedo rental. Thankfully it wasn't so last minute that we couldn't cancel the rental and get our money back. A day later and we would have been screwed and I would have been mad. I really enjoy Dietrich's. The owner is very nice and helpful. The shop is well kept, well stocked, and reasonable. If you're looking for something nice for the man in your life it's a good place to look. They carry lots of interesting things on top of nice clothing.

No matter how well prepared and organized you want to be as a bride, chaos will ensue as your wedding gets closer.

It Feels Like Midnight

Well, we never did get our pumpkin carved yesterday. Sometimes that's just how it goes. It will live to see another holiday and hang out for Thanksgiving now. Tomorrow I'll probably start taking the Halloween decorations down.

Our chicken got really good yesterday. It was probably the best chicken I've ever made, and I've cooked quite a few chickens in my lifetime.

We slept in super late today. I actually got the handfasting ceremony done for the wedding though. So that's a plus.

Chris was a prince and made dinner. Hot dogs with chili and mac & cheese. He's now lost in Fallout 3. He's gearing up for Fallout 4 to come out apparently.

Everything feels so weird today between how late we slept in and the time change. By the time we woke up it was pretty much getting dark again.