Medium Term - Get paid?

Now I need to work on a Medium Term Plan. 

I made up my mind on the short plan (read the previous post) the night before I published that post.  I'm surprised at how many people want me to not go down that path.  So, before I got into the medium term, lemme just share some of the comments I'm getting.  

The first I got from mom.  She doesn't want me to throw away ten years of work.  She especially doesn't want me to touch my 401k and ruin (or at least greatly diminish) my retirement.  I guess I shouldn't be surprised by her opinion as I don't want to do these things either.  But I feel that I'm just not explaining it well enough.  Here's the simplest way I came to my plan:

• I need to do something now.  I'll run out of FMLA in days and can get fired if I continue to call in. 
• Once that thing is done, I'll need to pay for my bills until I'm medically able to return to work.  That might be in a few months, in might be a couple years.  
• Out of the three options, Medical Leave, Waived Rights Leave, or Resignation, the Medical Leave is the only one that can take days/weeks/months to get approved.  I could literally get fired before I get it approved.  
• Sure, I probably wouldn't get fired as I'd be working toward the leave, but what happens when it gets denied?  Would they continue to let me call in if I try to appeal?  Would I still have to give two weeks, when I wouldn't have any FMLA?  Would I get fired then?  
• Again, probably not, but I don't want my future return to state employment in a 'I hope so' or 'Probably not' type of scenario.  
• I could continue to seek my LTD, but I couldn't get my 401k.  In other words I might have to go without money for awhile and might even get denied, making living expenses a HUGE burden on my family. 
• In short, it might not get approved and it might be a problem financially.  So medical leave isn't an option as far as I'm concerned. 
• The Waived Rights Leave could happen almost immediately.  
• I could continue to seek my LTD, but I couldn't get to my 401.  
• This isn't a real advantage as it doesn't even save my job.  It just saves my seniority if I can return in a year.  And at this point I'm not sure if I'll be able to return in a year.  
• With the LTD being a 'hopefully' and the 401k being out of reach, this would still not be an option as far as I'm concerned.  
• Resignation gets me my 401k within a few weeks at most.  
• My job is gone, but I have confidence enough to believe I could re-apply and return to either my current job or a job back at one of the prisons.  So no real big problem there.  
• The 401k access means I don't have financial problems.  
• Not having financial problems isn't just about the wallet.  It's a MAJOR source of stress, so it's a BIG deal that I can get the 401k.  
• Resignation is the ONLY surefire way to protect my job (getting to put two weeks in) AND to protect my financial situation.  

To me, that's just a clear and straightforward path.  I appreciate that Mom doesn't want me to ruin my retirement, but neither do I.  I just don't see a good path that lets me save it.  Making the decision to just accept that was a relief of stress.  Having to justify it is a source of stress.  

The other person to give me trouble on the decision is my HR representative.  She's been a pain for a long time.  I wrote her almost two weeks ago now asking about these situations.  She never responded.  Now that I gave her the two weeks notice and asked her specific questions about disability benefits, insurance options (COBRA), and how long it will take to list me as a former employee (that determines when I can get my 401k), she has TWICE ignored my questions and tried to push me into medical leave.  I've TWICE explained that I don't like the 'roll of the dice' medical leave is and I really can't afford to go without work AND without access to my 401k.  She just continues to ignore what I'm asking and pushes me to go for medical leave.  

Last night I wandered around the state's website, looking for information about the disability benefits.  I believe i mentioned it before, but if I can qualify for disability benefits the state will continue to pay for my health insurance.  It's a HUGE deal, and if I can get that I won't need to worry about paying for COBRA insurance.  I found the place and wrote the a message explaining what was happening and asking for information.  They responded this morning saying they would mail me the application and that I needed to get it back to them before I resigned.  In other words, the longer my HR rep DIDN'T help me, the more chances I had of NOT getting it.  And she finally said she had nothing to do with COBRA and directed me to a different department.  I called that department and guess what... they don't do it either.  They directed me to the correct department and I'm on the path of setting up COBRA insurance.  

In case you don't know, COBRA insurance is continuing your group insurance at it's reduced group pricing.  It can last 12 or 18 months.  I found out that at the end of the pay period in which I quit, my benefits will stop.  That's September 16th.  They'll then mail me an application for COBRA and I'll have to apply for it and send in a payment.  Once they get the application and payment, the COBRA will go into effect and be back dated to the 16th.  The problem is that my MRI is scheduled for the 17th.  If I don't have insurance on that date, I might get a bill for a brain MRI (with and without contrast).  That can cost between $1500 and $8000.  My insurance co-pay for that would be $0 as I've already met my annual maximum.  

Yeah, it's important that I have my insurance ducks in a row.  

So that's why I chose resignation.  I'm not happy about it but I believe it's the best decision I can make.  I'm going for three (or three and a half?) things along with the resignation.  I'm going to continue to try and get the disability benefits as, obviously, it helps if my health insurance continues for 'free'.  I'm going to seek out COBRA insurance at the same time just to make sure I have health insurance one way or another (that's the half as 'insurance' is more or less one thing).  I'm going to continue to work on the long term disability as getting paid $5000 a month is better than not getting paid $5000 a month even if it's only for a couple years.  I'm also going to cash in my 401k as having money now is important.  

And for those thinking ahead and seeing that I might get the long term disability and not need to cash in the 401k... that's true.  But it's another 'might' that I don't want to rely on.  Worst case scenario, I get the 401k and the LTD and can simply pay off my bills and sock the rest away.  Then when I get a job I can put it into some investment or even add it to a 401k later at the new job.  Plan for the worst, hope for the best.  

I talked about my budgeting in the last post.  Something happened today that makes it a little easier.  I mentioned that I'd gotten my student loans forgiven (yay!).  Evidently the credits I got made it so that I not only qualified for the forgiveness, but made it so that I 'overpaid' by several months.  I got a check today for $2900 as a 'Student Loan Overpayment'.  It's from the US Treasury Department via the Department of Education.  Yes, it's already been deposited into my savings account.  That's a nice little buffer.  

And that's basically the medium term.  Quit, get insurance either from the state or COBRA, either get the LTD or not, and get the 401k to pay off my debts and possibly live on.  At the longest, that should be in place in October (probably earlier) and will easily go through the next couple years.

That leads to Long Term.  I know I ended the last post dramatically saying that the long term is talking about treatment, healing, and living the rest of my life and saying that if I can't get these migraines under control within a couple years I'd kill myself.  

First, I'm completely serious about that.  No, it's not because I couldn't live with that kind of financial future.  Yeah, it'd suck to go on SSI disability and Medicaid as those would be the only things I could afford but I could suck it up and do it.  I'd have my friend and family and I'd get through.  No, the reason I couldn't live with these migraines is that they're that bad.  

I know I've gone over having migraines before, but let me focus on one part that just scares the living hell out of me.  Brain fog.  Confusion.  Inability to think.  Whatever you want to call it.  I'm getting it in one degree or another with just about every day of every migraine.  When I have the brain fog going full steam, I can't think.  I just sit here like a lump on a log.  I generally have youtube on in front of me but I can't watch it full time as the light hurts.  Worse, I can't concentrate enough to follow a plot.  I sometimes put on old movies or old TV shows as I've seen them often enough that it doesn't matter if I know what's going on or not.  I can notice it when I have a clear moment, enjoy what I'm watching, and let the brain fog just come cover me up again.  I can't plan, I can't think about my family or friends, I can't write, I can't talk.  And I mean that last one literally... I can't talk.  When I try, I forget what I'm talking about halfway through a sentence.  I sound like an idiot or a drunk/high person.  And worse... I KNOW I sound like that.  I'm not gone, I'm just foggy, slow, and inconsistent.  It's not as bad writing, but writing takes forEVER as I forget what I'm trying to write halfway through a sentence.  Halfway through a word.  I constantly have to go back and re-read not just whole sentences, but entire paragraphs, just to get an idea of what i was doing.  

In short, I'm not me when I'm in that condition.  

Pain sucks, but I can deal with pain.  Light and sound sensitivty sucks, but I can cover my eyes and avoid loud noises.  But I can't deal with or avoid my mind being lost.  It's a nightmare going through it once or twice a month.  It's worse considering that I've been going through it more and more each month, more and more each week.  For the last couple months it's been almost five days out of seven.  In August it's been three days of NOT being like that.  

I'm at my wits end now.  What am I going to be like when it's been two years?  And that's just thinking about if it doesn't get worse.  I have to consider the possibility that it WILL get worse as its been getting steadily and more rapidly worse for the past 10 months.  

My grandfather had Alzheimer's.  He died when I was about 10 years old, so I had a child's skewed perception of it.  I just saw an old man that sat in a chair and would mumble occasionally.  As an adult I learned that the current thinking is that there's a genetic component to it and that it seems to skip generations.  I imagine that this might be what Alzheimer's might feel like and I've had that nightmare for decades.  Ending up like that.  Being stuck inside myself, realizing that 'something' was happening around me but not being able to perceive exactly what it was and being unable to communicate with those around me.  

Now I'm living that nightmare.  

No... if I'm going through this for that long without major improvement, I won't be able to continue.  I can appreciate people not wanting me to die or take my own life, but at that point I honestly wouldn't see it as ME.  I would have died long before that.  

So that's why I wrote that.  I wasn't trying to be dramatic or scare anybody... it's just how I feel.  

With that said, lets look at the next stage of treatment and diagnosis.  

My neurologist was very concerned about the escalation of the migraines over the past few months and especially concerned about the brain fog.  When I mentioned it and explained how it was forcing me to quit, he stepped out to 'look into it'.  When he came back, he had a plan.  He ordered a bunch of labs and the MRI.  

Now, as a nurse I can appreciate some of the labs.  Looking at my depakote level makes sense as that can mess you up.   But I've been on depakote for a couple years now without problem.  Looking at basic bloodwork (CBC, Comprehensive Metabolic Profile...) looks for anything just randomly out of whack (magnesium problems can cause mental lapses).  Vitamin B12, TSH, and T4 free, can look for metabolic problems (on the outside they could cause mental lapses, but it would be strange).  Folate serum can look for underlying nerve problems.  Sed rates can indicate inflammation while other labs look at how my liver is doing.  All of these are looking for shadows or problems as none of them are 'AHA!' tests.  None will indicate a direct reason for why this is getting bad, it will just point to --> A <-- problem that will require more tests to see what's going on.  

The MRI one scares me.  MRIs are not used to diagnose migraines.  There isn't a 'thing' you see on an MRI that indicates a migraine.  An MRI can show all sorts of problems that have nothing to do with the migraines or the increased intensity of the migraines or the increased intensity of the brain fog... but they might.  Take for instance aneurysms.  You can have an aneurysm in your brain that's doing nothing bad at all.  It's been sitting there for years and will continue to sit there for years without any indication it's even there.  BUT if you see it on an MRI and it's in an area that can be operated on AND you have symptoms... brain surgery has to be considered.  Brain surgery obviously has a LOT of risks involved with it.  So if my MRI shows an aneurysm (or several), do I need to get them surgically dealt with, even though they may have nothing to do with my migraines?  Might I go through something like my mom did with her heart bypass surgery where she had the surgery with major failure and ended up worse off without correcting the initials problem?  

And then there's the even scarier thought.  What if the MRI finds a tumor.  What if it finds cancer?  Per the American Cancer Society "An MRI with contrast dye is the best way to see brain tumors."  Let's face it, I smoke like it's my job and I'm at massive risk for cancer.  

Anyway, that's the diagnostic side.  I'm both thankful that my neurologist is going to these levels to see what's making this happen (or at least what's making it worse) and scared that he believe these actions are necessary.  Treatment wise, he has a three part plan.  First up is Emgality.  It's a once a month injection that works in a similar manner as Nurtec.  Normally Nurtec is more effective, but it can work in instances that Nurtec didn't.  I could even keep taking Nurtec while on Emgality, although I'm going to stop as it's just not that effective.  He said if its not working in three months I can contact him and we may go to the next step.  

The next step would be Namenda.  I'll be honest, I haven't ever heard of nor researched Namenda.... fuck, talk about scary.  I just looked it up and Namenda is primarily a drug for Alzheimer's.  Okay, I'll read more on that later.  

If the Namenda doesn't work we'd then look into low-dose naltrexone.  Naltrexone is a drug similar to naloxone, the drug you give to someone overdosing on opioids.  In low-doses it doesn't work like that, instead reducing a type of inflammation in the brain.  

What I find both relieving and frightening is that neither Namenda nor low-dose naltrexone are approved for migraine prevention.  They're being used like that and have limited trials, but Emgality might be the last 'traditional' medication I try for my migraines.  We're going into new areas of treatment.  I think it's obvious why I find it frightening... there aren't large studies of people on migraines being treated with these drugs and there might be unknown side effects.  But I find it relieving as my neurologist just listed these off as the next possible three steps.  He'd already given my case thought and had a plan.  I love that he's not just going by a standard treatment book.  

I think, if the labs and MRI don't find anything to push us someplace else, those three treatments can take between three months and a couple years to work through.  I like having a plan that goes that far out.  Let's just pray that I get some improvement soon. 

I'll do my best to keep you up to date.  For the next few weeks there probably won't be much to report.  September 13th will be my last day but lets be honest, I'll probably call in for most of that time.  I'll start the Emgality as soon as its approved by the insurance and delivered (if it's not improved, my neurologist said there are several other drugs that work the same that he can try to get approval for... they all work the same so he doesn't care which I use).  I'll have the MRI on the 17th and know how medical tests like that go... bad news travels fast, good news travels slow.  The disability benefits, COBRA insurance, and long term disability all may take a month to get rolling.  And finally the 401k should be in my account by the end of September or early October at the latest.  

Hell, the next thing you might read from me might be me taking a vacation.  I need to get away and just get my head back on straight.  Migraines or no.  

Oh... one last thing.  During dinner my brother mentioned a friend that has had a stroke recently.  He said he thought it a little scary that his friend said my brother might get a call from his wife... if he dies.  It got me thinking that while I don't think my death is a possibility... well, an MRI scan is scary.  I'm considering setting up a list of people for my brothers to contact should I die.  It'd include my close friends A and E... but maybe it should include someone in this community.  

Explaining that might be a whole new level of explaining and a discussion I'm not ready to have.  "Hey, if I die I need you to tell this person about it.  Oh... but tell them Caitlyn died."  

Yeah, it's something to think about.