Disability Case Manager Updates (Nov 2013)

So, I wrote this back in November 2013, but apparently didn't get it posted... and, have been away from the blogging world since then. I'm hoping to be moved to update soon, but I thought I'd at least get this one out there.

One thing that I really dislike is talking to disability case managers. Thankfully, I've been blessed with some really good ones, over the years. But, they're still asking questions that can really upset my anxiety and depression levels. And, knowing that they're just doing their jobs doesn't necessarily make it easier for me.

I talked to my disability case manager today. She was following up on how things have been going and any treatment changes. I had my second round of Botox a week ago, and have an appointment set up with my doctor mid-January. I told her that it's too soon to know whether or not the Botox will provide relief.

All of that is normal and expected... but, she also asks me every time we talk if my doctor and I have discussed what's next:

• what treatment to try next, if this one doesn't work

     or, in the case of today,

• what the plan is for returning to work, if the treatment provides any relief. 

I hate both of these!

The first one makes the assumption that the treatment isn't going to provide any relief. What a quick way to deflate your entire being. Even if you don't really expect a treatment to help, there's normally at least a small amount of hope deep down. Then, you have this external voice asking you to think ahead, as though you have everything already figured out, to when it doesn't work.

The second one makes the assumption that the treatment is going to provide relief. While that's not negative in and of itself, it assumes that the treatment will provide enough relief to allow you to actually return to work. Of course I'm hoping for relief! But, even if Botox is successful, that doesn't mean that I'm suddenly going to be able to return to work.

I responded to her in the best, most honest way I could. I told her that it depends what degree of relief Botox were to provide. And, if it does provide relief, my doctor probably wouldn't immediately have me return to work, since I have a history of treatments providing some relief for a few months and then stop working / helping.

Considering Botox (Part 2)

This is a continuation from Considering Botox (Part 1).

APRIL 6, 2013

I found out that my insurance has approved me to try Botox for my chronic migraines (I believe once between now and the end of August). My doctor's office called and let me know that they've found out that the Botox should be covered completely by my insurance (NO deductible and NO co-pay... covered 100%, done in office)!

What an enormous blessing! Of course, insurance companies change their minds all the time, so hopefully they'll hold true to their claims. But, I trust that God will provide, when / as He moves us forward.

I'm still not sure if I'm quite ready to set an appointment to start the treatment. I'm doing my due diligence in researching and familiarizing myself with the treatment itself, as well as possible outcomes... perhaps over-researching...

I find myself hesitant for several reasons:

• I HATE needles! I know "they're just small needles," but they're still needles! It's hard for me to imagine being calm through the treatment, even after taking some anti-anxiety meds.

• I'm concerned about the possible side effects / reactions that might occur. I may be variably sensitive to the treatment aspects of a medicine, but I'm overly sensitive to the side effects. I think what frightens me most is that there can be horrible reactions, and there's not a whole lot that can be done. You can't flush the system of the medication, or just wait a matter of hours of days for the medication to wear off. It's in your system for months, and it can affect every part of your body.

• [Let me preface this by saying that I'm aware that this is illogical and incorrect] There has always been some comfort knowing that I haven't tried / exhausted every possible treatment out there. I know that I haven't because there are numerous different combinations of treatments. But, it's been somewhat comforting (however illogical) knowing that I have not yet tried Botox as a treatment. It seems to have a higher chance of helping than trying to go back through and find a balance of medications and side effects that's agreeable.

• I need to get my mind right. There's a fear of it working (but side effects being really bad) or of not working (and exhausting yet another potential treatment option). This can really mess with the mind, and I know that I need to have my mind in a better place, so that I can give it a fair chance of working.

So, I find myself waiting and wondering if I'll ever know that it's the right time for me to try Botox. Will it ever feel right? I felt that having my neuro-stimulator implanted was the right thing to do, and at the right time... but, it hasn't provided the relief I'd hoped for (and actually experienced during the trial).

Can I handle another failed treatment right now? I know that's a negative way to think about it, but I have to protect myself from getting blind-sided by another failure. The same must be asked about having a treatment be successful - am I in a place that I can accept and grasp on to a treatment that provides relief? I know this may sound ridiculous to some people, but it's something that people with chronic pain really do deal with.

***************
I was looking back to see how I was thinking and feeling prior to getting my neuro-stimulator implanted, and I came across something that I wrote. It fits NOW as much as it did THEN (primarily, the first link below)!

• Anxiously Hopeful
• Anxiously Hopeful, continued

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Considering Botox (Part 1)

FEBRUARY 13, 2013

I went to my migraine doctor a couple weeks ago. I've at least gained a pound or two (finally, thank goodness!). He's going to make the pill counting issue better. We discussed Botox, again...

Talking about potentially trying Botox is a HUGE thing for me, and something I have such mixed emotions about. I'm scared to death of needles (big, small, long, short... it doesn't matter). It's never felt right to try Botox (not just because of the needle phobia). I know a lot of people don't understand that at all, especially since I've had a neuro-stimulator implanted (i.e., surgery), but haven't yet tried Botox. But, it just hasn't felt like the right thing to try / the right timing.

Perhaps I'm starting to feel that it might be time to give it a try yet, but there are still hurdles ahead. My anxiety skyrockets when I so much as think about it. But, I don't want to continue to have chronic, debilitating migraines and never even tried Botox as a treatment. I believe, though, that treatments may work differently at different points in time... maybe it wouldn't have provided migraine relief had I done it a few years ago, but maybe now it might. Who knows?! My doctor's office is contacting my insurance company to see if they'll cover it, how much it'll cost, etc. Then, the ball will be in my court.

This will be continued in Considering Botox (Part 2).

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Social Security Increase in Benefits

Medicare costs to offset Social Security hike
(CBS News, Oct 19, 2011)

Social Security payments will be increased next year! There hasn't been an increase in benefits since 2009. 2010 and 2011 have been the first two years without a cost of living adjustment (COLA) since automatic increases were enacted in 1975.

Medicare is expected to announce the 2012 Part B premiums early next week. The expected premium will be $106.60 per month; which will lower the paid premiums for about a quarter of those enrolled in Medicare Part B, but increase the premiums for many others.

According to the article I read (here), the amount of wages that will be subject to Social Security payroll taxes will increase from the first $106,800 in wages to the first $110,000. (I think that all of one's income should be subject to taxes, but whatever). Currently, workers pay 6.2% Social Security tax on wages (which is matched by employers), but the tax rate was reduced to 4.2% for 2011.

Government Program Rant (Jan 22)

Medicare remains an obstacle course that I feel tangled up in. But, no matter how confusing the intricacies of Medicare are, it's something else that bothers me more right now.

All of the state and federal financial assistance programs that say they're for "low income" families LIE! They're for "low asset" families. My husband has no job (and no unemployment income... a whole different battle...), so our ONLY income is Social Security Disability and a little bit of private Long-Term Disability (= low income). However, we do NOT qualify for financial assistance because we started saving our money when we were very young. I started a 401K with my first full-time job, and I made sure to save before and while I was working. The mere fact that we did the right thing and put our money away in savings means that we now have to suffer the consequences. What the heck?! We could've just spent the money, and then had the government pay for our Medicare premiums and other financial assistance (e.g., Supplemental Security Income).

Don't get me wrong, I know that there are people out there that are in situations that they truly do need these programs. But, I think the way the programs are set up leave them WAY too open for ABUSE. I mean, the only way to get an increase in Social Security Disability is to have a child (or more children)... me now having a spouse doesn't matter, but if we have a child... I think it's the same way with Welfare. Really?! Does that make any real sense? Think about the implications of a system that works this way.

Please don't get me wrong! We're NOT looking for free handouts. We've worked hard for the money we have, and we intend to keep doing so (just as soon as we can find my husband a job...).

LTD and Doctors

So, I've been having a horrible case of anticipation/anxiety about my upcoming surgery. It's showing up in my mood and sleep disturbance (i.e., terrible insomnia). I woke up yesterday with a horrible migraine, and then listened to a missed voicemail that spun my day even more out of control...

My long-term disability (LTD) carrier is currently reviewing my claim to determine whether or not they're going to extend my LTD benefits. The nurse that's reviewing my claim called me because they had received information from my headache specialist/neurologist regarding potential for improvement and release for return to work date. My doctor mentioned the former, but not the latter, at my previous appointment with him (at the end of October). Apparently, he put a release for return to work date as 11/29/10!!! WHAT?!?!?! Are you kidding me?! Yes, my permanent neurostimulator was supposed to be implanted on 11/16, but that would only allow 2 weeks for recovery. 2 weeks!!! The doctor that is doing the surgery told me to expect at least a 6 week recovery time. Heck, it took me most of the time I had the trial in (a week) to even start to heal from that... a more minor procedure.

Once I recover, the process isn't done. It's NOT a magic bullet! I'm SOOO sick of everyone thinking that this neurostimulator is going to be implanted and everything is just going to be peachy. Okay, it's possible... but not probable. I'm still on all kinds of meds. So, whether I get off of them or adjust the doses, there's a process of medication adjustment after the surgery recovery.

Why on earth would my doctor even put a date on the form? He's been asked this question on millions of forms for me over the last 19 months. He normally responds by saying something like:  "expected return to date - 6 months, but will have to re-evaluate at that time." I called my doctor's office and expressed my frustration with the situation. I'm still going to bring it up with my doctor at our next appointment (in January) because it really ticks me off!

I didn't get nearly enough sleep last night, but I was able to function a little more today than yesterday. I got ahold of my LTD carrier, and talked through the situation with the nurse. She's going to report to my case manager that my claim should be extended and then revisited around the end of January. But, she does't make the decision.

My migraines yesterday was bad... and, to top it off, I ran out of my abortive meds after my second dose. Didn't occur to me to this morning that I could've sent Jeremy to pick up the refill I had my doctor call in to the store for me (his work is giving them 2 weeks off... sure hope this isn't a sign of another job loss). I hate that my mind just stops working altogether like that.

On a more positive note, though. We'll be heading to Texas in the next couple of days, and then I'll be having my surgery on Wednesday. I can't believe it's almost Christmas!

Considering Medicare

Something made me break today. I received an information packet in the mail about Medicare benefits, since I'll have been receiving Social Security Disability for 2-years in April 2011. I received a form last week to fill out to get reduced premiums for Medicare (though we don't qualify), but it didn't hit me until today. In this packet, there was a Medicare Health Insurance Card with my name and everything on it. That's what hit me like a ton of bricks. I'm only 25 years old! The fact that I'm holding a Medicare card for myself is beyond surreal. I don't even know how to explain it... So, now I'm faced with all these decisions that have to be made now/soon regarding Medicare coverage.

My permanent neurostimulator implant surgery is a week from tomorrow, and I have no idea what life will look like once it's in and I really have a chance to heal from the surgery. I'm trying to balance hopeful and realistic...

Approved & 'Who Am I'

Renewed hope...
Answered prayers...
Lingering anxiety...
          ...of/for new freedom.
          ...of/for new opportunities.
          ...of/for a new future.
          ...of/for a new life.

I received word today (after a lengthy story of back and forth between me, the insurance company, and the doctor's office)... I've been APPROVED for my permanent implant!!! The surgery won't be until December 22, but I'm SOOO happy that it's finally approved and a date has been set. Merry Christmas to me! :-) Although, I'm not quite sure how I'll feel for the holiday weekend, which usually consists of 3 days going from family party to family party (4 parties) and Christmas Eve service at church. I'm just so relieved that I'm going to be getting it implanted before the new year! So, now I've just got to work on getting over this horrible sinus infection (and stopping these recurring migraines) and getting my immune system as strong as possible, so that my surgery and recovery will go as smoothly as possible.

I appreciate all of the prayers that have been lifted up, and I would ask that you continue to keep me in your prayers as I wait for, go through, and recover from the surgery / procedure.

Below is a song that I have always loved, but it really touched my heart today when I ran across it on YouTube.

Who Am I by Casting Crowns

Who am I?
That the Lord of all the earth,
Would care to know my name,
Would care to feel my hurt.
Who am I?
That the bright and morning star,
Would choose to light the way,
For my ever wandering heart.

Bridge:
Not because of who I am,
But because of what you've done.
Not because of what I've done,
But because of who you are.

Chorus:
I am a flower quickly fading,
Here today and gone tomorrow,
A wave tossed in the ocean,
A vapor in the wind.
Still you hear me when I'm calling,
Lord, you catch me when I'm falling,
And you've told me who I am.
I am yours.
I am yours.

Who am I?
That the eyes that see my sin
Would look on me with love
And watch me rise again.
Who am I?
That the voice that calmed the sea,
Would call out through the rain,
And calm the storm in me.

Not because of who I am,
But because of what you've done.
Not because of what I've done,
But because of who you are.

Chorus

Not because of who I am,
But because of what you've done.
Not because of what I've done,
But because of who you are.

Chorus
I am yours.

Whom shall I fear
Whom shall I fear
Cause I am yours.
I am yours...



"Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here!" (2 Corinthians 5:17)

Still Sick and Waiting

A frustrating and stressful few days/weeks have left me wondering "WHY?" Why does it seem that things just seem to fall in place for some people... other people? I feel like my life it stuck in a muddy paste.

Here's where life stands right now...

I'm still sick as a dog. I went back to my doctor today. He said the steroid shot and the antibiotic I got last week don't seem to have killed the infection, so I'm on a different antibiotic and continuing the cough syrup I've been on.

I've been a few rounds with my doctor's office and the insurance company. I've been super-frustrated with things. And, quite possibly the only thing keeping me from completely flying off the handle is the fact that I'm sick, and it wouldn't be a good idea to have surgery with my body fighting an infection like it is (has been) right now. So, I'm still waiting.

• "Cast your cares on the Lord and he will sustain you; he will never let the righteous be shaken." (Psalm 55:22)
• "Cast all your anxiety on him because he cares for you." (1 Peter 5:7)
• "Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight." (Proverbs 3:5-6)
• “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” (John 16:33)
• "but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." (Isaiah 40:31)
• "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help
• you; I will uphold you with my righteous right hand." (Isaiah 41:10)

Procedure/Surgery Postponed

Apparently my computer was cranky yesterday as well, so this didn't get posted... this was supposed to get posted yesterday afternoon...

The past week or so have been an emotional roller coaster. I was somewhat like this before my trial stimulator implant, so I attribute it to nerves. But, it's been a lot worse this go-round (i.e., leading up to the permanent stimulator implant). I've been on edge, irritable, moody, crying for no reason, etc... It can all pretty much be summed up one word: ANXIETY. But, that all changed in an instant today...

I'm not sure exactly how to express what I'm feeling right now... I'm in shock, angry, frustrated, upset, disappointed, defeated, and worn down. My procedure/surgery to get the permanent stimulator implanted has now been POSTPONED because the insurance company has been dragging its feet in approving the authorization request for the procedure. AAAAAAAAAGGGGGGGGGHHHHHHHHH!!!!!!!!! I just want to scream... and cry...

So, the insurance company is supposed to make a decision about the authorization request this Friday, at which time we'll set up a date/time to have the procedure done... right before Thanksgiving, when my doctor is going to be on vacation for a week... excellent! So, I'm left, once again, with more PAIN, ANXIETY, and WAITING.

I rode down here to Texas yesterday with my in-laws to be here for the procedure and recovery process. Don't get me wrong, I love to visit family. But, if I'm just going to be here waiting for a few weeks, I'd like to be home with my husband and my normal surroundings. What really drives me crazy is that my parents and husband were planning to take off work for this, we had to last-minute cancel my husband's flight down here... and now, all of this is CANCELLED / POSTPONED. I'm used to my migraines changing and affecting MY life (and even, to some extent, my husband's) to where we can't really plan and stuff, but now it's spreading to where it's affecting my other family members' lives?! What the heck?! I HATE THIS!!!