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!
5 comments:
first of all, thank you for visiting my blog and commenting. it's always reassuring to know that you're not alone, you know? :)
i was lucky that my diagnosis came as fast as it did...behcet's is rather uncommon and my primary care physician had never even heard of it! luckily, the dermatologist she sent me to had, and the testing and diagnosis only took a few weeks. others go years before being diagnosed and by that point the disorder has progressed ten fold and sometimes they are unable to live a functional life (due to the pain, possible blindness, arthritis, etc. that comes with the territory). before the diagnosis, they thought i had lupus but the symptoms weren't all matching up. and oddly enough...my mother was going through testing at the same time and they think she now has crohn's disease.
reading your blog gives me hope and understanding. i know many don't like the "i feel sorry for you" approach, and i don't want to go that way. i feel empathy. even though i haven't had to file for disability or anything through an employer (ha! because they fired me for being "sick"...can we say lawsuit? yeah.) i know that in the future if we can't keep the disorder at bay...i may be looking at social security benefits and disability depending on whether or not i am able to work.
anyway, i have bookmarked your site (I couldn't find an RSS feed to add you to my feed reader...not sure if blogger sites have that?) and i will definitely be dropping by every now and then.
i wish you luck with all you are going through, and i'm glad you took the time to "introduce" yourself. (i also have a more personal blog over at http://beautiful-addiction.org if you're interested. i like to separate my finance and personal ramblings lol)
I have tried similar drug therapies; I have taken MS Contin, Duragesic, Hydrocodone in various strengths,Kadian (totally useless),and am currently on oxycodone 80 mg/6 a day along with Demerol and muscle relaxers.I also have medication for breakthru pain called Fentora, which is a buccal delivery system i.e. under the tongue or between upper teeth and side of mouth. You might want to inquire about this drug. I have intractable pain in my neck and right shoulder, inoperable. I have been on SS disability since 2003. I just turned 60 but sold my business and retired in 2002.I also had a responsible job along with a factory that my husband and I owned. 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.
If you think I could help you in some way, I don't blog but can be reached at ambler@northstate.net.I know about pain.My name is Diane and I've been getting worse for at least 35 years but still here.
I can't say I know what you're going through because I don't. All I can do is offer best wishes that in time the situation will start to turn around. Until then, stay strong.
I found you through frugal zeitgeist. I'm so sorry about what your going through and I hope that the 2nd half of 2008 brings you lots of offsetting sugar.
Good luck with everything!!! I just saw your comment on my blog, thanks so much for sharing :) I'm sorry i don't have anything to add to help you, but i'll keep you in my prayers for sure.
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