Monday, January 14, 2013

Invisible Illness

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:   Fibromyalgia, pinched nerves in C6 &C7, peripheral neuropathy
 2. I was diagnosed with it in the year: 2011 & 2012
3. But I had symptoms since: 1998
4. The biggest adjustment I’ve had to make is: . Accepting my limitations and letting go of those things I can not do any longer
5. Most people assume: that just because I try not to show it, everything is fine with me.
6. The hardest part about mornings are:  knowing that once I can get up,  I will fight all day with the pain until I return to my bed when I get home.
7. My favorite medical TV show is: Greys Anatomy
8. A gadget I couldn’t live without is: My Iphone
9. The hardest part about nights are: Trying to get comfortable to fall asleep and knowing no matter how long I do won't be enough
10. Each day I take  one day at a time...sometimes one hour at a time
11. Regarding alternative treatments I: am open to trying some but scared as some treatments(alternative or otherwise) make the pain worse.
12. If I had to choose between an invisible illness or visible I would choose: Invisible because I choose who knows.  At least this way, some of the time I can keep my privacy.
13. Regarding working and career:   Currently, I find it so very hard.  I honestly am not sure how much longer I can struggle through my days.  I am trying to get the accommodations necessary to continue working.  The last thing I want is to have to give up this part of my life.  Financially, it would cripple my family.  Emotionally, I would truly have to adjust as I have worked since I was 12 with a short period of that work being at home with my children.  I truly don't know how I would adjust but with my pain being at the level it has been and how much of a struggle it has been lately, I just may have to.  On a positive note, I've become an Independent Sales Representative with Avon in the hopes of having a business that works with my limitations.  Feel free to peruse my web site at   ;)
14. People would be surprised to know: the extent my life has changed from 2 years ago.
15. The hardest thing to accept about my new reality has been:  just how extensive my limitations have become.
16. Something I never thought I could do with my illness that I did was:   start to open up about it and find so many other people in my life that have it also.  Almost like a secret society that no one actually wants to be a part of but we are thrilled to find others that truly deeply understand exactly what you are going through.
17. The commercials about my illness: Can often be misleading causing some to think they know exactly what it is that I have.
18. Something I really miss doing since I was diagnosed is: spending time with my friends at karaoke
19. It was really hard to have to give up: the freedom of choosing what to do with a day in advance.  At this point, my answer is always " I would love to but we will see how I'm feeling that day and if I can, I will be there"
20. A new hobby I have taken up since my diagnosis is: sewing(when I can) and learning all I can about my illness & using the online support group I have found.
21. If I could have one day of feeling normal again I would: Its so hard to say with only one day...I would do whatever my children wanted ....I would get my entire house clean & all the laundry done...I would go out to karaoke with some friends(and try to get some new friends to come too)...I would dance...I would sing...I would have a few drinks....and yes, I would make wild, crazy, loud love to my man!
22. My illness has taught me: Enjoy what you't dwell on what's lost...accept your limitations
23. Want to know a secret? One thing people say that gets under my skin is: Oh I've heard of that, you just need a good psychologist because it's caused by depression so it must be in your head. (And yes...I've had several people actually say this to me)
24. But I love it when people: recognize that I need help and just help without me asking. Bring home dinner to surprise me, do laundry & fold it without me asking, make sure the kitchen is clean so I can make dinner.  My daughter has been known to tell me, Mom, You can't do that, go sit down and let me help you.
25. My favorite motto, scripture, quote that gets me through tough times is: It's just a reminder to myself.  I've survived worse...I can get through this too.
26. When someone is diagnosed I’d like to tell them: 1. Do as much research as you can to learn about your disease.2. Find a support group either online or in person, You will need people that know exactly how you feel because unless they are living it, no one is going to fully understand it. 3. Listen to your body  If you don't, it will force you to.
27. Something that has surprised me about living with an illness is: how you find out who your friends are.
28. The nicest thing someone did for me when I wasn’t feeling well was: they told me to go rest and took care of making dinner & cleaning up the kitchen.
29. I’m involved with Invisible Illness Week because: If all of us do our part, write a blog post, re tweet this post, share on facebook, pass on info.. whatever. Each step is a step closer to awareness, understanding and acceptance. It is the easiest thing we can do, but collectively will make a difference.
30. The fact that you read this list makes me feel: thankful that you are trying to understand.  Thank you!

Friday, January 11, 2013

You Lose

It's no matter.....
you still lose....
look at yourself,
your a lonely, miserable miser who's only joy is in NOT supporting your children....

How's it feel to know that another man willingly does more for your children in a day while you take pleasure in paying a lawyer to prevent you from doing the morally correct thing?

How's it feel to know that my daughter....yep that's right MY DAUGHTER, never wants anything to do with you ever again for as long as she lives? ......Why?   Because you showed your true colors & she wasn't wearing the proper rose colored shades to ignore it.  

How's it feel to know that she is and will achieve her goals?  She is going to France....She is going to college while in high school...she is going to college after high school....She is a member of the honor society!.....She is going to make one awesome teacher!  She will be whatever she wants to be....AND she will never have any reason in the world to thank you.....because you have done everything in your power to escape the responsibility of helping her to achieve her goals.......

You've done everything you can to keep MY BOYS down....and I am doing EVERYTHING that I can to raise them up and make them see their potential!  And guess what....IT'S WORKING....slowly...ever so slowly...but I see progress.....And they will find their way and achieve EVERY SINGLE GOAL they set also....once again...without any help from you......

So NO you don't win.....once again....You LOSE....You will not keep me or MY CHILDREN down....We will be happy despite your best laid plans....and you can sit in the dark, all alone with your anger and your money....enjoy it because it's all you have left.

Monday, January 7, 2013


As those of you that know me are aware, I have been recovering from surgery on 12/26 to remove my tonsils, part of my uvula and part of my soft palate.
There were 2 reasons for the surgery.
1. I have spent the majority of my life with tonsillitis .
2. I have sleep apnea.
Now #2 is most important in relation to my fibromyalgia . One of the symptoms of fibromyalgia is fatigue that is often compounded by lack of healthy sleep. My thinking is that sleep apnea is not helping the situation. Since there was a solution available, it was in my best interest to try.

All that being said, I have had a lot of time to look inward as well as be a quiet observer outwardly.

Looking inward has brought forth some important questions and possibly some answers. I came to wonder: what is a good friend? And naturally the next question that came to mind is: Am I a good friend?

A good friend is someone who is there for you without you necessarily having to ask them to be. Good friends are few and far between but I do have some. Distance becomes somewhat of an impudence but that doesn't change the fact that there are people in my life that I know I can pick up a phone and they will answer.

Now the second question had me very worried because I don't think I can just unilaterally declare myself a good friend. I know that there are some that no matter what time day or night, I will answer their call and help to manage their latest crisis . But I also know that I have made some promises to help a friend proofread something but due to dealing with health, kids & work, I didn't do it. Just doesn't feel very friend like to me. I also wonder if a crisis should arise for certain friends,who have always been there for me, would I be the person they call? I don't know. Does that make me a bad friend?

Or is there a balance? Are we constantly paying it forward? I listen to Jane meanwhile Jill listens to me. With all my introspection, I didn't come to a firm I a good friend?

Only a true friend could answer that for me.....and if I'm not, please tell me, how can I be better?