Wow - July has come and gone!

Dear Readers:

So sorry it has been such a long time. I'm adjusting to a revised form of morphine and while I've been able to read and comment on other blogs, it has been difficult for me to write as I make the transition.

I'm off to a HOA meeting for the condo community where I make my home. Need to shower and get cleaned up prior to walking down.

I'll write/post more very soon. It has been a very busy few weeks - days go by so quick! But I don't feel as if I've gotten much done for myself.... except, of course, keeping my team of doctors happy with continued appointments.

Will be back soon for a longer update.

Reader Comments and Update

Wow - people are reading and commenting on the blog.
Thank You. Thank You. Thank You.
Question: Am I Preachy?
One person offered the following comment:

I really looked up your blog to see who brazenly keeps telling what other bloggers what to do/not do and was rather disarmed when I saw what you're going through. You come across as somewhat preachy but medication affects you and the way you think and convey your thoughts.

This person really nailed a problem I'm having.

I know the morphine can alter behavior and reactions to situations - and I'm slowly learning how it is doing it to me. I'm far more sensitive and can be offended very easily. One of my neighbors offended me this week in a big way - left me in tears. It was so bad I called my therapist for an emergency session. He even said my reaction was out of proportion and thought my emotions and behavior were being influenced by the morphine.

Today, when speaking with another neighbor about the situation, she mentioned many people in our little condo community have notice and discussed the change in my behavior since starting Fentanyl and then changing to morphine. (For clarification, I live in a small condo development with 29 units and by choice have a community garden, share a weekly meal, and have an active after school program for the children.) Geez - I just love being the center of attention and fodder for the gossip girls.

I asked her how they felt my behavior had changed - I wanted specifics. She gave me an example. I thanked her and told her she was the first person to have shared with me any concern or raised any question regarding the morphine's influence my thinking process or behavior beyond what I had noticed and have openly discussed. (I have been honest with my neighbors -- when they noticed I was no longer going to work or driving -- I sent them an e-mail about what was going on and why... I don't know how much of the gossip is influenced because they think they are seeing a change because they expect to see a change.

Anyway, I know the narcotics play with my mind and the thinking process - it is one of the reasons initially I took the medical leave as the medications were being changed. I knew during those weeks my mom was passing away the Fentanyl was affecting my thought process and contributing to depressive feelings.

So dear readers - I will be honest with you and ask you to be honest with me. And, most importantly, let's be kind to each other.

Question: Do I Qualify for Benefits?

There was another very wise comment/question I would like to respond to:

You might want to make sure your disability coverage covers you if you are
disabled for only your own field. If not and if your limits are mainly cognitive
the disability company can claim that you could do a job that doesn't have
significant cognitive requirements and not grant you benefits.

In the early days of my medical leave, I was in constant contact with my office. At first I was in withdraw from the Fentanyl (Duragesic had been taken off the market and no patches in my prescription could be found at any of the local pharmacies). The physician at the pain clinic prescribed Methadone and when I spoke to my office, they freaked. This is when they told me that they had wondered if it was good for me to have been working on the Fentanyl and before returning to work, they wanted a note from my doctor stating I was once again able to work and would be 100%.

The Methadone was not a good medication for me, so a week later I was back in the pain clinic. We discussed my employer's wanting a note and the 100% comment - this is when I was told and it sunk in for the first time - I would never again be 100% - I would never again be the person I was before. I started on the morphine treatment and was feeling pretty good (morphine has a certain euphoric quality to it).

I spoke with the office and discussed the doctor's comment about 100% - we acknowledged that while it was unfortunate in many ways, compared to some co-workers, their 100% was equal to my 50% or 25%. If we could work together to identify and define a "new 100%" with reasonable expectations then it could work.

And then the side effects started to settle in. It didn't take too long. The doctor said to be patient, that sometimes it takes four to six weeks for the body adjust and adapt and the initial symptoms to leave. I spoke with my office once again - at this time we'd started talking about "plan B" - a continued medical leave with my going on long-term disability.

My company signed with this insurance provider in November, 2006 - since then, I have been paying the premium monthly with after tax dollars.

This is how my company's policy reads regarding the definition of a disability for which benefits are paid on a claim:

Disability and disabled means that because of an injury or illness, a significant change in your mental or functional abilities has occurred, for which you are:

Prevented from performing at least one of the material duties of your regular occupation during the first two years of disability and after two years are unable to perform all of the material duties of any gainful occupation; and,

Unable to generate current earnings which exceed 80% of your current monthly earnings from your regular occupation or any gainful occupation.

My office sent me the forms and I've met with my primary care physician to complete the paperwork. Since then I've spoken with the Rep from the Insurance Company who was very helpful: First in determining my office had an old form; he got me the the new form. Second, providing suggestions on how to best explain my cognitive disabilities and how they relate to my job (I am an architect) much of my work involves using spreadsheets, calculations and standard formulas, climbing ladders, measuring spaces, driving to client meetings, etc.

While I'm still able to express myself (put letters to paper that create words that string into sentences becoming paragraphs to finally convey a thought or idea), I am unable to do complicated spreadsheets and complex math calculations. I fell twice yesterday in my home due to dizziness - so I'm not the best person to be crawling around a building site, climbing ladders, etc. And, there is no way I would be myself or anyone else at risk by driving my car to client meetings.

So, for now, there are people at the office who can be rising stars. They aren't me and they can't fill my shoes, but they can take the opportunity and run with it. (I was heading up a $100 million project when I left and had a client requesting I manage their $300+ million project that starts next year.) The disability insurance can give both my employer and I some time to assess my strengths and translate those into billable and revenue generating opportunities. My disability insurance pays a percentage of my gross salary. Because I paid the premium with after-tax dollars, my disability income is not taxed. Because I maxed out my 401(k) and HSA, the amount I will receive on disability will be the same amount I was taking home every month.

Conclusion - Ask Away!

If you have a question or a comment - please, ask away. I'll do my best to answer. This only took me six hours - not too bad, eh?

Time Flies

And I'm not even having any fun.

I can't believe it has been almost two weeks since I last posted.

Math and Numbers are Flying Away

The cognitive losses continue and are pronounced.... and are becoming more difficult to hide.

My ability to do math problems and simple calculations in my head is gone. I still know 1+1=2... Therefore, I can still make the mental leap that 11+11=22. But don't ask me the total of 52+69. I can't do it in my head - or, if I can, it takes a very long time - and I need a calculator to confirm the result.

Speaking of calculators, if I use one, I typically do the problem four or five times to make sure I've done it correctly if it involves multiple numbers (i.e., 77+35+33+33+25+83.....).

And, then of course, there is the "everyday math" I am losing. For instance, I was in PetSmart the other day and there was a 12 year old dog (that's dog years). I know one dog year equals seven human years, but I could not figure out the human age of that dog (7x12) so I had to ask (84). Even now I had to use a calculator to confirm the answer rather than trust my memory.

This is not good. Math and my understanding/use of numbers seem to be slipping away. It is as if there is a little switch in my brain and the morphine has reached out and turned it to the "off" position.

Medication Change

I went to the pain clinic this week. The morphine I was taking (MS Contin - one tablet every eight hours) wasn't working - I was experiencing too much "breakthrough" pain. So, I've been switched to Kadian - another form of oral morphine - only this is in a tablet form that I'll take once every 12 hours. I've been on it since Tuesday - so far so good... a little breakthrough pain, but not as bad. We're trying this for two weeks. I go back the week of July 14 to evaluate this medication's effectiveness.

Disability Claim Progress

I met with my primary care physician on Tuesday and we reviewed the paperwork for the long-term disability insurance. Many of the questions have more to do with physical abilities (how long can I sit, stand, grip objects, lift items, etc.) than cognitive skills (I design hospitals - my work is done at a desk, it involves complex problem solving, math in many forms (i.e., reviewing calculations, budgets, spreadsheets, etc.). I often have to make real-time decisions based upon information and data presented to me - and numbers are always involved. How can I do this any longer?

It was frustrating: The application was written for someone who works in a stockroom, not a designer/architect who needs to be in full possession of various cognitive and problem solving skills.

Wednesday I spoke with a representative from the insurance company, it seems the form my office sent me and my doctor and I filled out was the old version. I'll need to go back to my doctor with the new form and have it redone - which isn't a bad thing. After talking with the rep, I know more now about how they want the answers and comments structured to show and support how my cognitive losses have impacted my ability to perform and do my job.

All-in-all a very productive week. No wonder I was so exhausted today. No energy to shower, wash my hair or get dressed. I tried to read a book but my concentration is shot. It's taken me over three hours to write this post (in the past, it would have been 15 to 30 minutes - tops).

Request from Readers

If any of you have experience (or has a family/friend story to share) filing for Long-Term Disability, I'd love to hear about! Remember, I'm not yet applying for Social Security Disability (SSDI)- what I'm applying for is the Long-Term Disability (LTD) offered by my employer as a benefit and group policy that I paid for with my "after tax" earnings. I'd also like to know more about anyone's experience with SSDI - but that still years down the road, and hopefully with some retraining and occupational therapy and time a new career or job opportunity will become possible.

Thanks - have a great 4th of July!

Disability Claim – Cognitive Function Loss

Before I share more about my finances or budgeting process, I wanted to give you all an update on the disability claim process.

I saw two of my doctors today. They both are in agreement I have significant cognitive loss. I tried to do some simple arithmetic for one doctor and failed horribly. Both doctors have no doubt the morphine has impaired my ability to think clearly. Yes, I’m able to write – but my posts take up to eight hours to draft and edit. And, of course, in my everyday job, writing is not what I do. My job entails more numbers, math and calculations - not to mention driving: both to client meetings and job sites.

Tonight I was looking at the disability forms – it was sad because so much of the forms are geared towards physical disability: the ability to walk, sit and stand. And, yes, while I am in pain – the morphine just isn’t as powerful or effective as the fentanyl – which does limit my daily activities and endurance, the skills which are involved for my ability to do my job center on my thinking, thought process, and problem solving abilities. My daily job doesn’t require physical strength but mental gymnastics. And at the moment I'm not able to perform.

Both doctors are in support for filing my long-term disability claim and I have appointments in the coming weeks with them to start the paperwork process. I hope it won't be too difficult and the insurance company is easy to work with.

Thank God For The Emergency Fund

There is no way I could or would be taking this medical leave if it weren’t for having my Emergency Fund (EF). Without the EF I would have tried to work, be making horrible mistakes, my performance would be suffering, my sick days would be sky high, and by now I would have been either on probation or fired. This was a situation where it was best I was honest, and take myself out before doing irreparable harm. My employer even shared with me that they had been questioning as far back as last November and December if it was appropriate that I had been working.

To make this medical leave work, I try to keep my finances simple – yet at the same time, I do need to keep some funds segregated, if only to keep them from becoming co-mingled.

Financial Accounts – Liquid Assets

Currently I have two checking accounts. “Old Checking” and “New Checking” – and in a future post, I’ll explain why this is so. I also have three money market accounts. One account is where I keep my deposits given to me from the tenant’s of a rental unit I own. I also keep in this account added funds to cover “emergencies” – such as needed funds if I should have to evict a tenant, clean and change the locks – as well as two to three months of “cushion” money equal to the monthly carrying costs (mortgage, HOA, utilities) in the event the unit sits empty between tenants. Every month I deposit a little money into this account to increase the “cushion” for future maintenance and repairs.

“Life Tossed Me a Lemon” EF Funds

The second money market account is where I keep the “Life Tossed Me a Lemon” Emergency Funds. This account has $5,000 for general – like when my car went on the fritz a few months ago – it was a $1,100 bill to my mechanic.

The third account includes are the funds earmarked as my “six months of earnings and salary replacement” should I not be working. In reality, these funds are usually kept in a variety of investment vehicles and CDs – but given my current situation and market volatility, it was best to have the funds consolidated into this account for the time being.

Why I Call it an Earnings Replacement Fund

I’ve heard many people refer to this type of an account as their “X months of living expenses” funds. However, it is my honest opinion that the first month or two of whatever catastrophic event (illness, termination, layoffs, resignation) that created the situation necessary to be using these funds, most people don’t curb their spending enough to live within what their revised budgeted amount should be. So, I figure it best to anticipate my spending as I always have for the first month or two as I adjust. Six months of take home salary replacement is $18,000

Current Financial Picture – Net Worth IQ Report

As of today, I have $29,165.23 of liquid and available cash in the accounts described in this post. I have $71,000 in retirement funds which include traditional and Roth IRAs, plus two 401(k)s. Also in the positive column, I own my own vehicle (2003 Volkswagen Jetta with 40,328 miles) and have a ton of beautiful expensive jewelry (that is a long story). The value on my condos are based upon the tax assessment – not a comp or internet appraisal.

On the debt side, I have $14,000 in student loans and the mortgages on my condos (the primary residence and rental unit). Because I’m thinking of selling the condo I live in and moving into the rental unit (more about that in a future post), I have been buying furniture and new light fixtures and other items to finalize the decorating and remodel of my condo. When I get the credit card bill (0% interest for 9 months), I’ll update the debts column.

Experiment: Budgeting

Over the years my finances and financial health have mirrored my physical health – ups and downs. It was only as recent as 2001 I had virtually no retirement and a net worth of negative $15,000. In a future post, I’ll share more about my financial past and how I got to where I am today. In the meantime, I’m starting an experiment – YNAB (You Need A Budget from www.youneedabudget.com) has a free 10 day on-line course to help people start and establish a budget. I’ve been very loose with my budgeting process (only at home, never at work), so I’m going to give it a shot.

I’m also doing this as a “self test” to see where I am with the morphine and how it is affecting me. Remember last week’s Excel test? This will be more of the same. I know there has been no improvement on my math skills – simple equations I was able to calculate in my head before I can no longer do – and it is frustrating me!

Character, Karma and all that Crap

I don't know who said it, but here's a quote I found in my inbox one day:

If God brings you to it, He will bring you through it.

People talk about character. Sometimes they'll say that a challenge in life, such as a medical illness or financial hardship, is a "character building experience." People have also told me, "God never gives us no more than we can handle."

I say, "No Way."

I was not at the end of some line and born character deficient, and now in life am subject to all sorts of negative karma to build character to assure my spot in heaven. Nor am I some amazing person who can handle infertility, divorce, and long-term illness. And, my best friend isn't the Senior VP of an international software company with a loving husband and two great kids because God decided she can't handle the crap I got.

I think things happen in life. It is what we do with what we get, the decisions we make, the paths we follow, and the journeys we take are what guide, define and shape us. We have free will. We all have capacity for kindness and compassion. And, when we need him/her, God is there for all of us - equally.

Sometimes life just sucks. And when it does - grab the tequila - or make some lemonade.

Disability – Shame, Stigma and the Ultimate Price of Pain

I have a long complicated medical history and now, for the first time in my 20+ year career, face filing long-term medical disability. I've not been to the office in nine weeks. Technically, I could qualify for benefits in 25 days. With each passing day, I feel the hard earned success of my career spiraling down the drain.

My situation is this: I have had this disease/condition for over 20 years. I've had eight surgeries - the most recent being at Stanford two years ago. That surgery was done by the best physician/surgeon in the world and was considered the surgery of last resort. When the pain started back up, I consulted with my doctors: They were all in agreement I am no longer a candidate for surgery and at this point would benefit from a long-term pain management program.

Meeting with the doctors at the pain clinic I was given three options for pain management – all opiate medications. Because it came in a patch form, I chose fentanyl and started taking the generic prescription last fall. The side effects were considerable and I was unable to drive. Once we established the generic product didn’t work, the insurance company allowed me to be treated with the “brand name” drug: Duragesic.

Duragesic, however, was not without its problems, and in February of this year, the drug was recalled and there is now nothing available at local pharmacies. Due to the recall and problems with manufacturing process, my choice was to go back to the generic fentanyl patch or change to another medication. We tried an alternate medication.

When the change in medications first started, I needed to take time off from work to treat the withdraw symptoms I was experiencing from no longer wearing the Duragesic patch. The first drug my doctors chose to replace the Duragesic with was methadone.

Throughout this process, my employer and I have had frank and honest discussions. When the methadone treatment started, my employer shared with me was that when I was on the generic fentanyl and unable to drive, they were questioning my ability to work. They knew it was important for me to work, but they could see the changes in my performance caused by the medication.

Like most people, my employer is familiar with methadone’s prescribed use for only one thing: heroin withdraw. They aren’t familiar with its use as an acceptable alternative for pain treatment. With the start of the methadone, they asked I not return to work until I'm 100% with a note from my doctor that I’m able and capable to return to work.

I knew within a week methadone was not going to be an alternative pain medication and the morphine therapy started. I am not at a therapeutic dose for the morphine (I'm experiencing way too much pain) but I'm suffering tons of side affects that make it impossible for me to perform my job.

The ability to drive is a good benchmark for how I am doing. Last week, when we were increasing the frequency for when I could take the morphine, the pain doc and I spoke of my employer’s desire for me not to return to work until I’m back at 100%. The doc shared with me then that I may never be 100% like the way I was before.

It could be he’s said this before, and I’d just been in denial, but I really heard and understood the doctor for the first time during that visit. I saw all the years of education and hard work magically vaporize and disperse out of the room.

I have lost so much to the morphine these past few weeks, not just my ability to drive. I can no longer do easy or complex math (I'm a designer at an architectural firm; math is an essential function of my job).

This weekend I tried creating an Excel spreadsheet – a simple task which would normally take me 30 minutes to 1 hour took me almost 4 hours. Writing a post for this blog takes up to six hours. This loss in cognitive function is significant, for me, my employer and my clients. I'm expected to make real-time decisions that affect the lives, health, welfare and safety of many people and can't do so with any confidence because morphine clouds my thinking.

This is all very scary and sad to admit. I ask myself constantly if, by making this admission, I am doing lasting harm to my career and reputation? If other medications or pain treatment alternatives can be used successfully without the side effects of the opiates and I've made this admission and gone on disability, will my current employer ever take me back? Will a future firm take the risk and hire me?

My feeling is I've paid into the system... the future when I paid my premiums was uncertain - I may or may not have needed the benefits. Unfortunately I do need the benefits. Without them, I would be homeless. The private disability insurance pays 60% of my gross salary and is not subject to tax. It is good for 24 months. Later, I could apply for Social Security Disability... but the monthly payment will be far less.

I really want to work – however the effects of morphine at its current dose is significant – I fail self-administered field sobriety tests, doze at my computer constantly, suffer from dizziness and double vision. (In the plus column, I appear to have adjusted to the nausea.) All that said, and the morphing isn’t really touching the pain, which today, on a scale of 1 to 10 (1 being light, 10 being the worst imaginable) has be consistently between a 6 and 7.

I have two older sisters who are now on social security medical disability. One sister has Lupus, the other MS. Both suffer from fatigue, and then each has her own sets of symptoms for her condition. They find no stigma or shame in applying or accepting their SSDI payments. They’ve worked over their careers, would continue to be working if they could. The only difference between my sisters and me is they are both married and their husbands are the primary financial bread winner in their households. Being single, the responsibility is all on my shoulders.