The honeymoon is over...

So much has happened since my last post in 2011! It is nearly the end of 2015, people! I'll admit my blog has been neglected for good reason. My MS has been relatively dormant until this past May. The disease decided it wanted to rear its ugly head right as we were making our second cross country move in two years... this time to California. Why was this move more stressful than our last move when I'd just had major surgery and had a 4 month old son, our third child, in December of 2012 when we moved from MN to GA. Maybe it was because I'd had a few symptoms over the last year, numbness mostly and an MRI in Nov 2014 showed some lesion activity on my spine suggesting that the disease was active, not debilitating, but silently reeking havoc. And then boom, I woke up with numb legs in May, days before our move to MI to stay with my parents til our house was ready in CA... I could still walk and it didn't hurt really but they were definitely numb. My feet were numb too so walking became a very focused activity, especially carrying an almost three year old around. I'd love to tell you I relied on my village to get me through but we were moving and my health came last... wait is there a place past last? That's where my priority of me was, somewhere beyond last place. When the kids and I got to MI, I decided I should go to an ER to get help because I knew the numbness was worsening and I just wanted to feel better. Well for those in medicine, you know you don't like it when someone with a chronic condition and an out of state drivers license walks in asking for drugs. I tried to get my Mayo clinic doctor on the phone with the ER doctor but ironically the nurses at Mayo were both off that day in the MS center. Go figure. The ER doctor said to follow up with my primary and the on call neurologist wouldn't even see me. I felt totally defeated. I moved my family, our stuff and our lives to a temporary location and then tried to make myself a priority only to be made to feel that chronic patients in transition can't be helped. This is just plain wrong. I left that ER with a 5 day dose of oral steroids, knowing it would do NOTHING for my condition. I begged to even get this, which as someone who worked in an ER for a year and saw all kinds, begging rarely makes you a more credible patient. As I suspected, I felt no better but I managed. I felt the numbness improve from time to time but it didn't go away and frankly it didn't get worse, thank goodness. My Mayo team offered no support, calling me a week after my SOS to check on my condition. Explaining I saw no improvement, they still had no suggestions other than I seek care when I arrive in my new state. Thanks Mayo. For nothing. We arrive in California and well we bought a fixer...A real one. Not the cute ones you see on Property brothers with all the potential and of course the cute contractors to get you through it. So I started unpacking and pushing myself to get the house livable while my husband adjusted to his new demanding job and our children got used to their new surroundings...there I went again, to the bottom of the bottom on the list... To top it all off, we decided to do a full kitchen remodel... rip out the old and in with the new. We did it on a budget with a lot of help from my oldest brother, a plumber friend and little help from my Home Depot associate. It's done. It's beautiful and I love it. As we were in the midst of this stressful rehab, I started to have trouble seeing... It happened around Labor day weekend while visiting my other brother and family in San Francisco. We've never lived close to my side of the family so being able to drive to my brothers (both of them - the oldest is in Vegas) is a dream come true for me. Back to my vision, it started to shake... like I was on a roller coaster that wouldn't end. I would just try to close my eyes in my free moments (HA!) and get more sleep (double HA!). Well it didn't get better... I called Mayo and asked for my records to be transferred to UCLA, where a state of the art MS center exists. The guy I spoke with at UCLA made me believe as soon as my records arrived, I could make my appointment. Well he wasn't lying but the first appointment I could get was November 24. Ummm, yeah. No. I bawled on the phone to the nurse, told her my vision was now double and the numbness was increasing again my legs... her advice. Go to the ER. Really, people?! It shouldn't be this hard to get care and the ER is not the place for chronic care! WebMD will tell you that double vision warrants an emergency visit but that's WebMD. I've worked in an ER and they would have either sent me to an eye doctor or given me follow up with a neurologist and a big ol' ER bill as a thanks for visiting present. Did I mention we were demoing our house?! An unnecessary ER bill was not what the doctor ordered... (did you like that pun?) We have good insurance but the bill would have been $500 easy and after a worthless ER visit in MI complete with a $500+ bill, I wasn't going to do it. I bought an eye patch and my son would go around the house saying, "yo, ho, ho" when he saw me. I thought the vision might heal on its own because when I had optic neuritis six years prior, it healed after two weeks with no treatment. Well I haven't been as lucky. It's been six weeks and it didn't get better, maybe worse even. Some days I'd trick myself into thinking it was better and drive with both eyes open, only to panic and shut my "bad" eye immediately. Just so you know, it's legal to drive with only one eye. Don't worry, I checked. Last week, I decided I was done waiting and was going to try a loop hole method to get treatment. I got an appointment with an ophthalmologist. He was terrific. Funny, friendly and agreed this was my MS acting up. Oh did I mention, I started to go cross-eyed. Yeah that was the last straw for me. I just couldn't bare for my eyes to look weird to kids and my husband. The doctor did the exam and said he would try to get me into a neurologist sooner. And boy did he. My eye appointment was on a Friday and my neurology appointment was the following Monday. Thanks for that one, God. The neurologist was nice enough. They are a unique breed. Geniuses studying the intricacies of the nervous system and this mysterious condition. Bedside manner is a bonus not often seen in neurology, in my experience. He said it was a bit late to treat my eyes. He said I should have been seen two weeks into my symptoms. I wanted to punch the wall. Really. I TRIED TO BE SEEN! I tried to follow the rules and do it the right and most cost effective way... But back to my eyes. He said we could go ahead and try intravenous steroids for three days and it may or may not work... we also needed to do three MRI's - brain, thoracic spine and cervical spine. We would also need some blood panels for more baseline information to what was going on. Here we go... Two days later, a nurse arrived to start my home IV. Having done this six years ago, there have been some improvements. This time I didn't have to have an IV pole on display in my living room and mix my own drugs. Everything came prepackaged and this little tennis ball sized bag was self regulated to deliver my medication right into my IV. Great! After six attempts and two nurses, the IV was in and my first dose down. I waited... I hoped. I want instant gratification at this point. To wake up and see normal. Nope. Didn't happen. Hasn't happened. It is now day two and the IV is still in tact. I am grateful for that! The second dose... still no miracle. There is just one more day. Now it doesn't necessarily work overnight but hey, a girl can dream right? So now it is your turn. Pray this works. Pray I get better. Pray I make good decisions regarding my long term care. Pray for a cure for this stupid, dumb disease. I really hate having MS. I could go on and on about how this is not fair to me. I've had my share of life experiences and this just isn't what I imagined my life to be like... what a terrible statement, right? There are starving children in Africa, even right next door, perhaps. And here I am whining about my medical condition. I have good insurance, I have a house, I have a husband who does his best to take care of me, I have three wonderful kids... There... my reality check is setting in. I have it made. This is minor, nothing really. I'll still take those prayers, though. Til next time... Jaime