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!

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.

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. 

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.

A Light at the End?

Tuesday was a really big day for me. I had my second appointment with the rheumatology specialist at Jefferson University Hospital, and my first appointment with the head of the neurology department at Jefferson Neuroscience.

My doctors here are awesome, and doing the best they can with the resources they have. The science and equipment available at Philly to help is remarkable though, and offers fresh hope for me. I'm so glad all the doctors are on board with working together and understanding. I was originally worried someone would wind up butthurt because I was seeking another opinion. It's thankfully not the case at all though.

I'm really glad we left as early as we did because commuter traffic at that time was terrible. It took almost three hours, double what it should. We got there literally just in time for my first appointment. This was my third trip there so figuring out parking and where I was going wasn't nearly as time consuming. I'm starting to get the lay of the land. We had to check in and get security badges made up. The guy who did ours butchered Chris', but I'm sort of glad he did because it added some humor to the entire day. The black & white copy of his license photo looks like a terrible serial killer mugshot. Plus, I don't even know how to explain what happened to his last name. So, we have an alias now if we ever decide to go all Bonnie & Clyde if I become terminal or something. The Arcob's causing mayhem abound! I mean fine, there wouldn't be much point of an alias if I went terminal, but it was the star of some pretty imaginative scenarios and good laughs. Humor and a positive attitude is a powerful thing. Never underestimate it.

My first appointment was the neurology one. The entire appointment was unreal. It was exactly how you'd expect an appointment with something as serious as brain damage to go, but something I've never experienced. Technologies not available to us here yet. Once we were checked in a medical assistant took us back and took my vitals. Some serious vitals. It was a good twenty minute process. She even measured my balance & gait! I had to walk the length of a hallway on this mat full of sensors. It uploaded my steps onto a computer that measures your balance, weight distribution, stride, etc. They can monitor how your gait changes that way with time to see if you're progressing or getting better! It was really cool. I know, I know. The weird things that excite you when you're sick.

After that we got taken to an exam room where we met my nurse practitioner. My doctor has two practitioners that work with him constantly and I was assigned one that will be my treatment advocate is the best way I can think of to explain it. She hung out with me for awhile and took down my entire history since I started having MS problems, went over medications, pulled up labs and MRIs, and talked about what I was hoping to accomplish. She did a thorough neuro exam. I didn't do bad on most of it, but I tanked some spatial awareness tests. When the doctor came in she presented all of it to him for me, made sure she didn't miss anything, and then sat in for the entire appointment. When the doctor left she hung out with me for awhile still and made sure I understood everything he said, didn't have any unanswered questions, and knew what I needed to accomplish next. When I call for anything she'll always be the person I deal with, so I never need to worry that I'm talking to someone that has no clue what's going on. I really really like how they do things.

The doctor's really cool. He reminds me a lot of my neurologist at home, Kolva. He's this stocky unkempt Russian guy, with a deep accent and a unique sense of humor. Not only is he the head of neurology at Jefferson, but he's an immunologist as well. He's fascinated that my immune system pretty much attacks everything. While I have brain damage consistent with MS, I also have some aggressive atypical damage which has him concerned about a rare severe type of systemic or CNS vasculitis coming from my RA. And could be why I'm progressing even while on proper MS treatment. It's pretty much still your immune system being a dickhole and fucking up your brain, just for a different reason. A reason they know how to stop.

Interestingly enough, severe vasculitis is treated with chemotherapies like Rituxan. Rituxan was the treatment that made me feel the best so far, but I had severe reactions to it so they wouldn't let me stay on it. Reactions that could have been the result of massive cytokine death because it was working that well. I really think this dude might be on to something. Which is everything I've been praying to the universe for with going to Jefferson.

It could be that I have damage to my brain that they know how to stop. Damage that's currently unchecked because I could be taking the entirely wrong medication, aimed at the wrong part of my immune system. A super rare CNS vasculitis further complicating everything else I have going on.

Could be.

I have a ton of tests to get done. A buttload of work on my hands, but it could mean answers. It could mean getting better. It was a conversation a doctor hasn't had with me in a long time, and one of the main highlights of my trip to Philly. I could actually still get better. It's something I haven't thought about in a long time. I've just been trying to not get worse. Hope is a dangerous thing to hand someone, but it's something I desperately needed.

I have stacks of paperwork, prescriptions, labs, and tests to deal with. Most of which need to be done in Philly, and scheduled as efficiently as possible. It's not easy needing all of these tests and appointments so far from home, but totally worth it.

Chris doesn't want me to get my hopes up too high. It's really rare. It's also really dangerous (it can be fatal for tons of reasons, unchecked continuous brain damage, BLOOD CLOTS *cough*), but it's fucking treatable. You can read about it here if you'd like.

My mind is blown. No one's ever talked to me about this. I guess because it's that rare. I had no idea there was anything besides MS that could cause such severe brain damage. Going to Jefferson has beyond exceeded my hopes. I kind of want to make an appointment with my PCP just to give her a hug for making me go and rattle on about this exciting theory.

Every ounce of me wants to run with it and start treatment now. I want it to be right, I want to get better. But, it might not be the case. I need to do my due diligence and wait and see. The most pain staking part of being sick. Waiting for the tests, waiting for someone else to piece the puzzle together and shout 'Eureka!'.

Another awesome aspect of this angle is that it would open up a universe of treatment options for my RA. Which brings me to my next appointment!

After Dr. Leist blew my mind we went back to the car to regroup. My neurology appointment had taken about three hours. We had a little under two hours left until it was time for my rheumatology appointment across the street. Chris wanted to nap in the car because we hardly got any sleep. I attempted, but I was way to excited and full of questions and theories. I fidgeted around organizing paperwork and lab results, cleaning the car. I'm a nervous cleaner, and ruined Chris' hopes of a nap.

He wandered out with me to find a bathroom and hit up the food truck I've been dying to try the past two times we were there. They had an awesome chicken and rice platter for five bucks. Everything about being ServSafe certified and immunosuppressed says that food trucks are a terrible idea, but I like to live dangerously. Plus, steroids. I was not disappointed. By the time I was done nomming it was time to go see the rheumatologist.

She confirmed what I already knew, that I most definitely do have rheumatoid arthritis. I don't know if my damaged brain could have handled one more potentially life-changing differential diagnosis. She was fascinated by the neurologist's theory of systemic vasculitis resulting from my RA and eager to discuss it with him. She said I also most definitely have severe fibromyalgia. She added neurontin onto my list of crap I'm supposed to take, but after personally researching the side effects and what not I'm not sure of the risk versus reward yet.

Our main topic of conversation was steroids. I want completely off of them. She fears I may have developed Secondary Addison's from long term use and wants to get me down to 2.5mgs a day for now just in case. It's going to suck. The steroids are a gigantic band-aid right now. But it's a band-aid causing a whole other plethora of problems such as Cushing's syndrome. Ripping the band-aid off no matter how slowly is going to make everything flare that isn't under control. I want off, and they want to see what happens when I'm off. They're committed to fixing whatever happens, but until they can figure out how it's going to suck asshole.

We talked about lifestyle changes Chris and I have been making. We're trying to live healthier to create a better foundation over all. One of those big changes is how we eat and snack. We've cut out a lot of processed foods, and snack primarily on yogurt now. Yogurt is great for me on a probiotic level, plus some of the proteins in yogurt will help me get rid of the Cushing's syndrome. And, it's a healthy delicious snack.

Just look at our fridge, that's a lot of yogurt! I think we have pretty much every flavor in creation.

A fact that surprised both myself and my doctors is that I lost over thirty pounds since last year despite my heavy steroid use. I knew I lost some weight, but I didn't think it was that much. It makes them and me that much more optimistic that the weights going to shed off when I drop the 'roids.

Also on the aspect of lifestyle changes, the neurologist would like me to attempt to afford a Luminosity subscription to help with my cognitive function, and my rheumatologist wants me to take up an at-home yoga or Tai-Chi. I'll be stalking +Tara Gregory's stuff to figure out my own fat-kid yoga routine. Maybe I can even get +Chris Archeval to give it a go with me. While they'd prefer I go to physical therapy or legit classes it's not feasible. We have very open and honest communication because I need results and real manageable changes. Physical therapy and classes are exorbitantly expensive, and we can't afford it. Plus there's the transportation issue. Figuring out an at-home routine is a compromise I can manage that will yield results. Patients are quick to agree to treatment options that are not lifestyle compatible just to make their doctor happy and it results in failure on all ends.

If only I was as flexible as my adorable bastard of a cat whose chilling with me while I blog.

Daisy and Chris are still in bed in a coma practically. It was a long day in Philly, and took us about two hours to get home. We went to bed around eight. We were that tired. We got up around 1am for about two hours and ate something, and went back to bed. Chris is still sleeping like ten hours later.

My grandparents surprised us and got some stuff done around our house for us while we were gone. While I've been big on being independent with upkeep and projects for numerous reasons, it was a nice break. Plus she actually didn't hide half of my shit for a change. Open, honest, and respectful communication is a beautiful thing.

It's time for me to wake my husband, as we have much to do yet before the world shuts down for the day. He's still fighting off this damn campylobactor infection which is trying to ruin our lives. I wish that was the least bit dramatic. I still need to get tested for it too. Phone calls to doctors and the health department must be made, I have my pile of amazingness to dig into for Jefferson, and all of my local doctors to update.

Life is about to get a bit crazy for me for awhile, and I'm going to be in a world of hurt and suck in the very near future. For a change though, there's a tiny light at the end of the tunnel. Or is it just the beginning?

Meth

Today, has been a terrible terrible day. It all started out with getting our mail. All we got in the mail today was a single piece of mail, from the PA Department of Health. So I was all 'Heyyy derpenstein this looks important!' And Chris was all 'garbleaksgjwoiegaslkbna' because he was still in bed, but he said I could open it. So I open it and see this:

Unpacking My Baggage.

The story of how my diagnosis came to be, is one that very few people know the whole of besides my husband, until now...

Growing up my step-father was a raging alcoholic. My Mom and I were both abused, while she got the brunt of it. I think we both broke in different ways. We moved around a great deal. A lot of things got lost, broken, or left behind along the way. So many places and tubs became a catch all of things important that were saved yet never used. Never unpacked, or found in the obscure box they were shoved into. It's only recently I've been finally working through those things. Finding proper homes for that worth keeping, and moving on from what was not. I've cleared through a ridiculous amount of storage from my childhood. Sold vintage toys on Ebay, burned old love letters, found homes for precious trinkets.

A few items bring back precious memories, other items acting as the only proof of an event's existence. I've recently began sorting through an old jewelry box, my latest project. I have an updated more functional version to organize my jewelry better, and I have another on my 'to purchase' list to assist even more. I have a habit of collecting pressed pennies from places I go. They got their own drawer. Some of the trips I remember well. Some trips the copper trinket serves as the only convincing element that I was ever there.

I document my life meticulously now, especially moments of importance. My memory is terrible due to having multiple sclerosis. It's one of my most affected areas of brain damage.

It's safe to say that over time we all become a different person. We grow, mature, make mistakes, and ultimately become a summation of our experiences. What happens though when you can't remember the experiences you're a summation of?

Email Palpation?

Flip-flopping through a lot of insurance policies right now. My Geisinger policy ends tomorrow, and I start a policy through Blue Cross on the 1st. In February I'm switching to a policy through Cigna.

A key benefit I've noticed for the new year is long-distance doctoring. For my Cigna policy my co-pays have jumped to $30 to see my PCP, and $50 for a specialist. Considering the number of appointments I have in a week sometimes this adds up quick.

'Seeing' a doctor by telephone, video conference, or even email though is free.

Yeah, go ahead, read that again.

Bubba Wubba Wha?

Today has been very busy already, but very productive. I got up when Chris got up for work and started on things around the house. Straightening up, dishes, cat litter, garbage & recycling, freezing some extra holiday treats, etc. I've been running around most of the morning doing something. Finally took a break and sat down, and I find myself tinkering with my tablet now instead.

Downloaded Picasa on most of my devices and I'm figuring out Google Photos. It's pretty handy. It let's me easily upload images from any of my devices and share them between devices effortlessly, and it makes it really simple to upload them to my blog. Which in turn makes it easier to share with you guys.

Chris just came home from work about ...seven hours early.

I was all who's in our house? And he walks into the room looking like death warmed over. Apparently he threw up everywhere at work and got sent home. From one sympathetic puker to a potential-nother, I'll spare you the details. He needs a doctors note now to go back to work since he's in food service. He doesn't have health insurance yet so we'll be making a trip to the hospital later.

Having to use the hospital like a PCP is one of the many things wrong with our broken healthcare system.

I'm surrounded by sick people.

Doom.

Seriously though, my immune system gets regularly nuked, and is about to get nuked some more tomorrow. Everyone around me is acutely sick with a petri dish of crap. This does not bode well for me.

My Uncle Keith gave me a DVD of our wedding ceremony when we were at their house on Friday. I have plans to upload it to YouTube so that I can share it with those of you who would have liked to been there but were too far away.

I have to go see my regular rheumatologist today for a follow up, and then I suppose it's off to the hospital with Chris. Later I'm going to make a homemade chicken noodle soup. I can always go for a good hearty soup, and it's good for what ails you apparently.

Last night, it was hilarious, I snatched Chris' pack of cigarrettes away from him and I was holding them behind my head. Suddenly I got a spasm in my hand (yay MS!) and dropped them behind the couch. Hahahahah. I laughed so hard for about twenty minutes. Chris was far less amused, but it was funny. I guess you had to be there.

Our family likes to have fun.

In example, these hilarious pictures from Christmas 2014:

And this hilarious picture of my grandmother from Sunday:

Playing phone tag currently trying to get ahold of my dysautonomia medication. My pharmacy put in a new prescription request to my doctor last Wednesday because I ran out of refills and never got a response, and I am out of meds. Fun.

It's not like it has warnings all over it not to suddenly stop taking it or anything. *cough*

Anywho, time to get ready to get out of here!

Doctor's Orders

I went out to Philly last week to get an musculoskeletal ultrasound done on my hands. They're the only place in the country really that does it so far. It can be even more detailed than an MRI for some things. They found a lot thickening of my joint linings in my hands, but luckily no bone damage.

I'm back to trying to get off steroids again, and paying the price dearly as usual. Steroids are an interesting thing. They can vastly mask the symptoms of a great number of things; making you feel pretty okay. Even if you're very much not. When you're on steroids for a long period though your adrenal glands stop making steroids of their own. Tapering off steroids can make your body literally go into withdrawal if your adrenals don't 'wake up' quick enough. You get sweaty, nauseous. It's pretty much a 24/7 fight or flight response. Put that on top of whatever symptoms of your disease the steroids have been covering up.

I've been on steroids for so long, it's debatable if my adrenals will wake up. So slow and steady is the key, which is hard when all you really want to do is get it over with.

Why stop something that has such great benefits and such crappy symptoms to stopping? Artificial steroids are bad for you. The amount of steroids your body needs is far from an exact science, and changes throughout the day. An excessive amount of steroids in your system causes all types of crappy side effects. Major weight gain, bone thinning, organ damage just to name a few.