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Random Thoughts

Monday, March 8, 2010
I'm really glad that I recorded the "good day" last
Friday because I haven't really had another one since. I'm not whining, I'm just observing. One of the most frustrating aspects of being diagnosed with a disease like Pulmonary Hypertension, is that many times the symptoms are very subjective...based a lot on how you feel, but are not things that you can actually document. Sure, several of the symptoms are easy to document, like low oxygen levels, rapid heart rate, elevated pulmonary pressures (of course, that can only be done in a medical setting), etc. But, there aren't machines or tools that can document how tired you feel, when you're light-headed, when you have achy muscles or even feeling short of breath. The lack of tools to document these feelings/symptoms have left many of us without a diagnosis and sometimes, even accusations of being depressed or "faking it." Unfortunately many people with PH were delayed in getting a diagnosis and treatment, sometimes for YEARS because of these subjective symptoms.

When I was diagnosed, I discovered the fabulous Pulmonary Hypertension Association and their website, http:///www.phassociation.org where I actually found other people who were feeling like me and going through the same frustrations. It was life changing to have these subjective symptoms validated by others, people just like me!

Even though I've been doing the "PH Dance" for over 5 years, I still forget that when I feel like crap, I actually do feel like crap and am not making it up, feeling sorry for myself or milking the situation for attention or sympathy.

So, when I decided to post about my "good day" I was actually helping me deal with the "not so good days" and remember that it's not me, it's the disease...
I'm not sure this is going to make any sense to you, my dear reader, but, to quote the infamous Dr. Rod Markin,

"It is what it is."

Given all of that, I have now decided that my favorite part of the day is bedtime. Yes, it's partly due to the actually "getting to go to sleep time." But, for me, it's really about finally losing the pressure of feeling like I need to push myself to feel better so I can actually get something done. When it's the end of the day, all expectations for getting anything else done for the day are gone....pressures off.

"Hello Father God. I love you so much. Thank you for giving me "bedtime" so I can rest, recharge for tomorrow and have the pressure of feeling that I have to accomplish something today taken off my shoulders for the night. Thank you also for always giving me hope that tomorrow will be a better day.

Thank you so much for checking in.
Thank for so much for reading.
Thank you so much for your hope and prayers for all of us to have a good day tomorrow.

4 comments to Random Thoughts:

Anonymous said...

I like what you said about bedtime.
You said it so perfectly that the pressure of feeling like I need to push myself to get more done is gone.
How great you are at describing the facts. Thanks again for your informative post.

Anonymous said...

Don't ever forget that you have given all you have to give--women always do! Just rest (sleep!)--you are worth it! I've sent my full comments to you in an email via Facebook. You continue to be such an inspiration to me! And congratulations to all of you on the naming of Dr. Rod to the College of Medicine Interim Dean position! I'm still waiting for him to accomplish something! (That's a joke!) MJ

Bonnie,NV said...

Annette, I too feel the way you do about sleep and the time to good to bed to rest and try and relax. I have Fibromyalgia and the last 3 days have been he-- but I am starting to feel better. The pain can be so bad but I remember what I told you about enjoying your good/great days when you have.
Thanks for blogging Annette.


Anja said...

Hi Annette - I feel just like you. Bedtime is my favorite. How odd - I never thought, that it had to do with my PAH illness. But it has - I see it now - it almost made me cry reading this post. I feel strong most days, but alone in knowing have tired I am. Thank you for sharing this.