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!