Upside Down Life

I have so many things that I’d like to blog about… MS related issues that have kept me from blogging over the last several months, and I’m not sure where to start.  Maybe I’ll work backwards.

My week has been overwhelming.  My husband and I have been preparing for massive life changes.  I woke one night/morning at 4:00am.  I couldn’t fall back asleep because my mind instantly continued the planning that it’s been obsessed with for the last several days.  With the temporary state disability I’m receiving about to run out in December and no word from Social Security since I’d sent in my functional reports, we were in super planning mode.  Several family members have most generously offered us a place to stay until the disability process was complete.  From sources I’ve spoken to, it could be up to three years!  We were preparing for the long haul… the big fight.

But the offer of places to live – this is an amazing and beautiful thing to me.  It touches me to my soul to know that we have loved ones who are willing to let us invade their lives and homes – with three old cats to boot!  These generous offers have really made me think about a lot of things – how many people get lost in the system?  In the long process?  How many homeless people are out there on the street because they were just like me, an able, working person who got diagnosed with a debilitating disease, who did what they were supposed to, filing for assistance, just like me.  But they didn’t have family or friends who were able to help them, and so they end up on the street, homeless, poor, with nothing.  We live in an area with an enormous population of homeless people and it’s truly made me see them differently.  It’s easy to just think of them as people who didn’t want to work… or people with addictions who are desperate for their next fix.  I forget there are people who just got lost in the system and had no other option.  It’s heart breaking.

I also laid awake in those dark hours thinking about everything that had to be done.  It’s just the beginning of October, but I’d have to start packing up our house now, because I only have so much energy during the day and my husband works a full time job that can be quite stressful.  There are some days he comes home and he just needs to chill, so I want to help and do as much as I can, because he’s also doing so much more around the house that I can’t.  This won’t be like moves I’ve made before, where I could pack for 12 hours and stay up until 3:00am doing it.  I now have to really pace myself, but we probably wouldn’t have to move for two to three months, so what can I box up and put away that we won’t need for three months?  All the DVDs.  The CDs.  The knick knacks decorating the house.  Some of the dishes.  The closets haven’t been cleaned in years – they need to be emptied out and we can probably get rid of a lot of stuff.  (I like purging.)  We’d have to borrow a truck to make a dump run… we don’t have a lot of friends, and the one friend we do have that’s like family – her truck just stopped running.  So I guess we’ll have to rent a pickup at U-Haul or something.

Where ever we end up living, we’d have to rent a storage space for all of our stuff until we got back on our feet and in our own apartment.  Should we keep the old couch that we got for free?  No, probably not.  What about the ginormous 300lb old school box television?  We’d get rid of that.  So those are all things we’d have to buy again.

Where will we put three litter boxes in someone else’s home that’s already crowded with two new tenants and three new cats?  How will they feel when our old cat, who gets dehydrated and constipated, poops wherever he can sometimes because he’s just in pain and stopped up and if it’ll finally come out, it comes out, ya know?  Sometimes he has sinus issues and gets congested and snotty and sneezes and green snot shoots everywhere.  It’s totally gross (and I’m a weirdo about germs and bodily fluids – I’m so skeeved out).  But he’s our old cat.  And he suffers from these ailments and we try to make him comfortable – we love him, so we begrudgingly follow him around and clean up his messes.  Make him nasty tuna water soup to hydrate him.  I don’t expect other people to be okay with it!  They’ll be so grossed out.  I’ll feel so terrible.

These are all things just rolling through my head for days.  Waking me up and driving me crazy.  My life has never been so out of control and as you can see, I get a little anxious when I can’t control my life.  I’m a very organized person.  I plan.  It brings me peace.  When I can’t plan, it brings me massive anxiety.  Trying to plan for a dozen different life possibilities is nuts!

I have been fighting with the state and the county regarding my health insurance.  It’s been a mess.  The state has screwed me over once again with this insurance, I won’t even go into the mess that’s going on this time.

It’s just been frustrating.  It’s crazy to think that I can’t even really think about how MS is affecting me physically, because I’m too wrapped up in how it’s turned over my entire life financially!

Despite all the bitching and whining I’ve just done, I think this story has a happy ending!  As of today, I think things are looking up.  I spoke with the Social Security office and I believe I was awarded benefits.  I think we will be able to live on our own still.  I’m not 100% sure yet because the paperwork that says so was “supposed to get to you first”, but I haven’t seen it.  Being that it’s the government, and the experiences and difficulties I’ve been having with them and their red tape, I’m not going to count on it until I have it in my hands.

Still, the relief is immeasurable.  I hung up from my conversation with Social Security, and I just sat there and cried in relief.  I hadn’t realized the mountain of stress that I was carrying on my shoulders,  trying to pretend that I could fix everything when I couldn’t fix anything.  Suddenly the massive weight was lifted… and I just cried.  I think things are going to be okay.

Over-Emotional

I find myself crying more than I’ve ever cried before and I’m so tired of it.  I’m so sick of being weepy, and I definitely don’t like crying in front of people.

I go to the doctors and they ask about how things are going and I start crying.  I go to the case manager who’s helping me file for disability and I have to explain to him my lack of function and I start crying.  I go to the people who help me with my insurance and explain to them all the frustration we’ve gone through with it and I start crying.

I suppose it’s just that I feel so incompetent now and our future is so uncertain.  I do not have the “necessary skills to do something successfully.”

in·com·pe·tent

inˈkämpədənt/

adjective

1. not having or showing the necessary skills to do something successfully.

We got a letter in the mail yesterday from Social Security, and it was a denial.  I thought, “Well this came faster than was expected,” and we read through it all, saying they were denying us basically because I have temporary disability and I live with a husband who has a job.  Unbeknownst to either of us (until this morning), we both fell asleep with our future on our minds.

Surprisingly, I did not cry yesterday when reading the letter or last night as I laid in bed wondering about what will happen.  I called the case manager up this morning and told him about the letter.  He gave me great news – this was just a denial for supplemental income, which of course, we do not qualify for.  It’s part of the process.  (I wish he would have remembered to tell me this so I could expect it.)  I should still get something in the mail with functional reports to be filled out.  So… there’s still hope.  And hope is a good thing.

But of course, I ended up crying as I was messaging my husband online about the “good” news and he explained that he laid awake last night thinking about the uncertain future too.  I’d like to just be able to turn these emotions all off and power forward like a robot!  I’m sure I’d be more productive than I am just crying all the time!

Anyone Have Experience With M.S. and S.S. Disability?

I’m going through the process of filing for Social Security Disability since I’m no longer able to work.  All I hear anyone say is, “Start now, it’s a long process and you’ll probably be denied.”  So I started now.  I have a case worker through the federally funded clinic who’s helping me.  He’s proclaimed that he won’t do cases that he doesn’t think he can win, and he thinks I have a good chance of winning.  He had 9 that were approved in December alone, so he feels confident that he knows what they’re looking for when they’re making judgment.  After two appointments with him and a lot of paperwork that’s being faxed in today, I should get a ruling in 4-6 months.

What I’m wondering is if any of you with MS have gone through this process?  Were you approved the first time around or were you denied?  If you were denied, did you have to get a lawyer involved?  I’d just like to hear about other MS patients’ experiences if you’re willing to share.

I was real good about holding my emotions in check until the very end of today’s meeting.  As the case worker was quickly explaining the routine of the waiting period, the denial, lawyers getting involved, my mind started spinning and I made the mistake of asking, “What do most people do financially during this process, especially if they’re denied?”  “They end up homeless.”

That’s when the tears started slipping out.  I know my husband and I won’t end up homeless, we have a lot of family who’d be willing to take us in.  But man!  No beating around the bush there, eh?

And so the wait begins…

M.S. – The Office Job I Don’t Get Paid For

I’ve worked in billing (accounts payable/receivable) for about seventeen years and today felt no different.  I spent my morning going through a mountain of medical invoices and statements, sorting them by “vendor” and date, filing them in my little accordion file.

Then I went through all of my EOBs from the insurance company, making sure they paid everything how they are supposed to.  Swear, my premiums are so damn high because they send me about a ream of paper every month… out of about 13 pages, only 2 pages have info I need and I get about six of these “packets” a month.

After that, I got on the phone with the insurance company to file appeals for two visits to the neurologist at the beginning of the year.  You see, we only have one neurologist in our remote area “behind the Redwood Curtain”, and she is currently out-of-network with the ACA insurances, something I was not aware of when I went.  After those two visits, I was able to call the insurance company and get the third visit approved as in-network (something I’ll have to do every time I go to the neurologist now), but I’m going to see if they’ll cover those first two visits as in-network as well.

While on the phone with the insurance company, I thought I’d just double-check some info with them.  You see, I’m due for another round of three MRIs: brain, cervical spine and thoracic spine.  The imaging center told me they were in-network with the ACA insurance.  I thought I’d just double check with the insurance company since I had them on the phone.  The first rep told me no, he did not see them, they are not in-network.  I logged on to my insurance account to find someone else to go to, and bam!  The one I asked about pops up as in-network.  I call the insurance company back again and explain to the second rep.  She looks in her system and says she doesn’t see them.  I tell her I’m logged into my account and it’s popping up as an in-network option.  She puts me on hold to speak with her “provider relations department”, comes back and tells me they’re at lunch, so she can’t check.  I’m waiting for her to tell me she’ll follow up, but that’s wishful thinking.  I just have to call back in an hour, explain it all to a third rep, and ask them to check with their provider relations department.

Now… let’s talk about what I’ve been dealing with as far as MRIs go.  As stated above and previously, I live in a remote part of northern California where medical options are few and far between.  My only options for imaging are two hospitals in the area.  I didn’t think about “shopping around”!  But my neurologist’s office informed me of a program that the Multiple Sclerosis Association of America has to help fund MS patients’ MRIs.  You have to qualify financially and they will only help with the cost of one MRI every two years, but that’s better than nothing!  Here is a link if anyone is interested.  The lovely woman who spoke to me about my application informed me that she’d done some checking around in my area and they didn’t have an imaging center here signed up with them.  I could go to the hospital and they would still help me, but she told me hospitals were generally the most expensive places to go, and their funding is limited, so they try to discourage people from going if possible.  Well, being that I have to still pay the portion of the bill that my insurance won’t cover, it’s only going to benefit me, too!

I ended up calling my local hospital to ask how much my three MRIs would cost.  Without my insurance, it would be $20,500.  With my insurance, they can only charge $15,000.  I called an imaging center (the one that may or may not be in-network) that’s a four hour drive away, and the cost of the same three MRIs there:  $5500.  I’m going to have to make two trips down and back for all the MRIs, but guess what?  My gas STILL won’t cost $10,000!  Ridiculous.

This is pretty much what a work day in billing would consist of.  Paying and organizing bills and resolving discrepancies.  I guess I can count myself fortunate that I have the experience of all of this crap to help steam line it as much as possible.  I can only imagine how hard it might be for other people who don’t have a billing background to keep track of all of this, stay on top of it, make sure things are correct.  I’m having such a hard time with cognitive things right now, that every time I accomplish something, I’m a dork and think, “Go me!  You remembered to do it!  Alright!”

Conflict

I find myself struggling with accepting this diagnosis (which is ICD-9 medical diagnosis code 340).

There are a great many days where I feel like I have accepted it and don’t feel a conflict.  But I feel like I’m having more and more days where I’m trying to figure out just how I feel about it.  Today is one of the more difficult days.  I’m having what is probably one of the worst days I’ve had, symptom-wise, since I got diagnosed in December.  I awoke crying from a dream that a loved one had eight days to live.  Because of the dream (I think), I felt physically and emotionally exhausted before I even got out of bed.  Then I realized that I was having a very hard time focusing my eyes and my brain.  I’m brushing against every corner I turn, bumping into doorways, tripping over my feet, fumbling objects from my hands.  I can’t concentrate on anything… I was trying to watch the current episode of Vikings, which is only forty-five minutes long streaming, and I paused about eight times and it took about 2 hours to watch.  I don’t usually have these issues.

• Cognitive Changes

  • Memory (acquiring, retaining and retrieving new information) – yes
  • Attention and concentration (particularly divided attention) – yes
  • Information processing (dealing with information gathered by the five senses) – yes, burn myself a lot before realizing how hot something is; and I go from feeling cold to hot in regards to body temp
  • Executive functions (planning and prioritizing) – yes, tried doing the budget today, wasn’t working at all
  • Visuospatial functions (visual perception and constructional abilities) – yes, go to pick something up and it’s not where I thought it’d be when I looked
  • Verbal fluency (word-finding) – yes, man… i’m having such issues with “finding my big girl words”!

  -National Multiple Sclerosis Society

I’ve found myself feeling a lot of anxiety lately as I try to balance our household budget with all of the additional bills from the uninsured hospital visit that gave me this diagnosis combined with a loss of income, as I have recently lost my job.  My boss has had to replace me with someone who can work full time.  I can only seem to work two to three hours a day, and when I do, I’m exhausted the next day.  Though I am currently on temporary disability, it’s quite a pay cut to take when expenses have only increased.  Then I find myself anxious about what the next step is – do I have to go on permanent disability at 36 years old?  (I have an appointment next week with my physician that has me on temporary disability and will have to discuss my options.)  I hear a lot of people have difficulty and are denied the first time they apply.  Will we have a period where there’s no income on my behalf?  Finances stress me out and drive me mad.

So I’m feeling extremely melodramatic, and I’m a person who abhors drama.  I will actually go out of my way to avoid drama.  This diagnosis has me feeling like a drama queen… like when I say this whole reality feels so unfamiliar to me.  I’m a creative person, I’m always creating stories in my head, and I feel like this is something that I made up while daydreaming (day nightmaring?).  It’s so completely different from the life that I led pre-diagnosis, that I often feel like I’m looking at myself from a third person perspective – like it’s not real, or watching it happen to someone else.  I wonder if this isn’t a form of denial?  Denial is supposed to be the first stage of grief (then anger, bargaining, depression and acceptance).  My order feels all mixed up.  I actually was very accepting of it initially, and I’m fairly certain I wasn’t in shock.  Then I got angry.  I’m not sure what I could bargain for, and depression has only come in short 2-3 hour long infrequent bouts.  So maybe not feeling like it’s really happening to me could be denial?

I’ve been really emotional too!  I start crying at everything and I feel horrible for my husband, who’s been really patient with it.  But I’m so tired of being a weeping mess!

I really just don’t know how I feel about it. I don’t think I can even really say I’m pissed.  Inconvenienced.  Annoyed.  Irritated.  Baffled.  Bewildered.  Bored.

Bored!  Man, that is an accurate word!  I’m just bored of always thinking about MS.  I read a lot of other people’s posts about how they don’t let MS (or other diseases) “define” them.  I don’t want it to define me either.  But fuck if I can’t stop thinking about it All.  Of.  The.  Time.  I keep trying to convince myself that it’s normal because it’s still so new to me, so I’m in an adjustment period and I have to first learn to live with it and how it affects everything I do on a daily basis, and then it’ll become second nature and I won’t think about it all the time.  But I’m at about four months in, so should I be used to it by now?  I don’t know.

I don’t even have a good summary statement to make.  I think this post probably jumped around a little… like I said, I’m having issues focusing and keeping a clear train of thought.  And I’m self-medicating to help the symptoms, so I’m double-whammied on the thinking game today! 

Today’s Symptoms:

• Cognitive problems
• Vertigo
• Issues focusing visually
• Motor skill issues
• Numbness on right side at a medium level
• Light muscle spasms

20% Off Sale Today On Handmade Jewelry

While this might not seem like an MS-related post, it really is.  I’ve lost my job due to my MS-related chronic fatigue and with all the outrageous medical bills, I’m making attempts to earn money elsewhere, so I thought “Why not post my sale on my blog?” Just in case any of you are interested!

For today and tomorrow (4/1 and 4/2), I’m having a 20% off EVERYTHING sale on all my handmade jewelry!  Use the coupon code APRIL20 during check out!

ZINK DESIGNS ETSY STORE

What We Worked For

It’s ironic.  I’ve worked full-time for all of my adult life.  I’ve never liked working.  I’m a good worker and I do take pride in my work and my work ethics.  I’ve always gone over and above my duties at every job and I’ve always done my job with gusto and a smile.  My work history is office work – bookkeeping, accounts payable/receivable, reception, etc.  There was a two month stint where my husband and I lived on a billionaire’s remote ranch as ranch hands… but I’m 95% sure he was a mobster and we left that job fairly quickly.  That’s not really a story for my MS blog, though.

People have asked me throughout my life what I’d like to do/be if I could do/be anything.  My answer has always remained the same: nothing.  There’s no job that I’ve ever wanted – I cannot come up with something I’d like to do for 40 hours a week for pay.  There are things I enjoy doing as hobbies: photography, writing, jewelry making, cooking.  People who know me always say, “You’re so good at (insert hobby), why don’t you get a job doing that?”  Once it turns into a job, it’s not enjoyable for me.  It’s work – something I have to do.  All that would do is take away a hobby from me, take away something I love doing, so I refuse to do that.  I’d rather go to a job I can tolerate, then come home and enjoy my hobbies.  I’ve always had a hard time wrapping my brain around the idea of going to work for 40 hours a week or more because I have to.  Life is so short.  I’m not spiritual, so I don’t believe I will go on to a better place after I die.  So why should I spend my short life slaving away for mediocre pay doing something I don’t want to do, because I have to.  “Because that’s just what you do.”  Says who??  And why are they in charge of what I do?

While I might be idealistic in my heart and sound like a whiny, self-entitled thirteen year old instead of a thirty-six year old woman, I’m not ignorant.  I work because I have bills to pay.  Because I like sleeping in a bed with a roof over my head and having running water.  I have been fully prepared to work as long as I have to and to do it with little complaint.

Now the idea that I may not be able to work looms ominously before me and I’m scared as hell, every single day.  You’d think I’d be happy about this – I would have thought I’d be happy about this!  There is no joy.  Just fear and anxiety and uncertainty.  This is not the way I wanted it to be, not at all the way I wanted it to be.  A tiny little bit of me wondered if I somehow jinxed myself because I didn’t want to work.  It feels like a monkey’s paw… a wish come true with dire consequences, enough to make you wish you could take back your wish.

I went in to work today for about 3.5 hours.  It wiped me out.  I’m exhausted.  The muscles in my legs feel weak and shaky (and I was sitting the whole time, not on my feet).  My eyes have become slightly unfocused.  My brain is sluggish and dull.  I know things may change, and I hope to hell they change, but I also know that I have to be prepared for the fact that I may not be able to return to a full-time job.  As it stands right now, I couldn’t even do a part-time job.  Every time I try working and don’t make it very long, it doesn’t feel like “failure” so much as I just feel a cold stab of fear pierce my chest.  That sounds a little melodramatic, but it’s pretty accurate.  Even typing this out, I feel the weight of anxiety on my chest, making my heart rate speed up and making it a little difficult to breathe.  I’m not sure I’ve ever actually had a panic attack, but I sure have been feeling on the verge of one lately when I think about our finances and our future.

I know there are jobs where one can work from home.  Right now I still have motor skills and I’ve got crazy-fast typing skills.  I have a small bit of knowledge on medical billing.  But I’ve looked into that before and really have no idea how to get into that.  I know I’m going to have to crack down and really do some serious research into this.  I guess if it comes to that, I will technically be considered disabled – will I be someone who qualifies for Equal Opportunity stuff?  Do I want to be treated differently because of my disability?  Does it even matter what I want, when it’s what’s necessary to keep a roof over our heads?

I thought as time went on after the diagnosis, things would get easier.  Hahaha!  They only seem to be getting more difficult.  My spirits aren’t exactly down – I don’t know if this post is going to sound whiny or not, but I’m not really bummed.  Just overwhelmed and slightly panicked.  I’m trying to be rational and tell myself that it’s just because everything is so new to me – it’s an adjustment period.  And learning to adjust to a completely different lifestyle is going to bring about some anxiety and uncertainty.  So I don’t feel doomed… yet.  Just a little bit freaked-the-fuck out!  😉

This is one of my favourite songs by one of my favourite bands, Against Me! and it’s been going through my head as I think about my future with work, or lack thereof.  My husband and I don’t really have any songs that we say, “This is our song!” about…. but this is one of the songs we have a history with from the beginning of our relationship together.  We’ve both always known there’s a height beyond skyscrapers and a distance beyond the freeway.