My Thanks to You

It gets hard to write a meaningful Thanksgiving Day post when one tries to be meaningful and thoughtful every day.  You read my blog, you know I am grateful and thankful for my family and friends (mostly) all of the time.  So this year I thought I would do something a little different and thank YOU!

Yes, you reading this blog, you who come as often as you can to check in on how Grant, Tyler and I are doing. You who really care about us.  You who read me during the fun times or the times that I am not doing so well.

You are the reason I write.  Your comments, whether on my blog, Twitter, or Google+ keep me going and your support helps me when I am low and your “thank you for writing this!” encourages me to keep writing.

With the permission of these ladies, I thought I would name some of you personally.  My mind’s not the greatest as you know, so I looked back on my past posts to people who commented often on my blog to name the following people.  If I didn’t name you or ask you, please feel free to leave a comment to let me know that you are here and that you come often.  Even if you never commented before, take a 30 seconds to let me know who you are!

Okay, here goes…

Most bloggers who tweet do so first and foremost to promote their blogs.  How surprised I was to learn that I actually could make some good friends out of the bargain!  Karen, @KRDRE1974, has been a great friend to me and we crossed that border between friend on the internet and friend in real life earlier this year.  Karen, it has been my pleasure to meet and know you and to commiserate with you!

Another Twitter friend, Cindy, @momBto3, helped me out when I was in a tight spot because she could and because she understood and because she trusted me.  She was there for me when there was no one else and I will thank her and owe her always, even though my “debt” has been paid.

I met Michelle of Hope In Bracelets when I approached her to do a contest with me for the first time.  Not only does she make beautiful jewelry, she also makes a beautiful friend.  Hey Michelle, I was going to ask you about doing a holiday contest, what do you think?

I met Beth through a blog hop and even though the hop no longer exists she hops over to my blog every so often to say she cares.  Thank you, Beth!

I met another blogger through Mama Kat’s Writer’s Workshop, Caroline of I See You Looking at Me.  We connected because of our mutual mental illnesses and she has given me comfort.

Meredith, I don’t know where I met you…Twitter, through the Blogosphere…but it seems like we have been friends forever!  Even though Meredith has Lyme Disease and I have Lupus, the two of us can get along!  Thanks for crossing over, Mer!

I met Shannon through Twitter.  We have Fibromyalgia in common and Shannon posts some great info about Fibro.  She also comes to my blog and gives me some great advice and it is so evident that she cares!  It is much appreciated, Shannon!

And finally, there are a couple of people, who behind the scenes, have helped me all year long that definitely deserve mentioning.

I met Amy of Selfish Mom, when we wrote for the now defunct Silicon Valley Moms Group. Any time someone offers me a proposal, an ad or a promotion, or I’ve got a troll on my blog, I email Amy with the subject line usually something like “Heeeellllppp!”  Amy has been blogging a lot longer than I and she is always my “go to” person and she writes back really quickly.  Thank you, Amy, for assisting me with the many questions I had this year, and for helping me make good decisions and for helping me to learn.

Finally, I met Brittney of The Nerdy Nurse, through LinkedIn.  I had put a discussion topic on there asking people if someone could please help me out with some technical issues on my blog that I could not fix on my own.  The only problem was that I could not afford to pay them.  Brittney was the only good soul who fixed my blog for free. Mama Sick’s little quirks were ironed out and looks a little sharper thanks to Brittney!

I know there are many more to thank, again, this is all my foggy head could bring to mind. Please leave a comment today to let me know you are here too!

And to all of my readers and friends who keep coming back to read about my problems, even though I know you have plenty of your own, thank you!

Happy Thanksgiving to all and I hope that those of you who are chronically ill get a break today and are able to enjoy the holiday with your family and friends.


Losing, Keeping and Making New Friends

Inspired by Mama Kat’s Writer’s Workshop.

Prompt 5)  This message has been floating around Facebook for a couple of weeks:

“If someone wants to be a part of your life, they’ll make an effort to be in it.  So don’t bother reserving a space in your heart for someone who doesn’t make an effort to stay.”  

Who does this make you think about?

Usually Mama Kat’s Writer’s Workshop is an opportunity for me to step out of my usual, for my audience to get to know me in other ways through writing prompts that allow me to talk about my childhood, my teen years, and my life before I was sick.  There is usually nothing about the fact that I am disabled by my chronic illnesses in these posts, and if you were visiting from Mama Kat’s and didn’t look at the title of my blog, you may not even know that I was sick.  And that is exactly why I like Mama Kat’s weekly writer’s prompts.

But if ever a prompt screamed out “Emily’s Blog!” or “Emily’s Mission Statement!”, it is this one.  We all lose friends through one way or another.  Like divorce, sometimes friends just grow apart in their ideologies.  A friend may move away and life makes it impossible to keep up with each other. Sometimes their can be a huge blow-out between two people and they never talk again.

When you are chronically ill, the loss of friends makes a huge impact on your emotional and physical well being.  You are going through the toughest times of your life, and the ones who are your true friends, and who believe that you are actually that ill and will never get better, stay.

As a person that is living a chronically ill life, I am finding that the sicker I get, the more friends I lose. I have been extremely ill for four years now, although I was diagnosed with Rheumatoid Arthritis in 2003.  This year I have been to the hospital four times.  I have lost hair, I have gained weight, I have picked up infection after infection.  This has probably been my worst year and I am still surprised to find friends whom I have known over a decade distancing themselves from me with no explanation. I feel they are afraid to see me this sick and are afraid that I might be contagious to them or their children, when it is they who are dangerous to me.

So what do I do to make up for old friends leaving?  I find other people like me; through support groups, Twitter, Facebook and Google+.  There have been a few people whom I just needed to tweet out that I needed support and were right there with their phone number so I could talk to them.  I have met true friends through blogging and certainly met them through my own blog, a unexpected bonus.

Tyler’s friends’ mothers are becoming some of my friends too.  Perhaps it is because they have only known me as sick, they do not have to feel sad and compare me to the way I used to be.

I have about three friends that date back from junior high, high school and college.  They are the ones consistently trying to make the effort to stay in my life, even if it is only a couple of times a year, or if we have to take out our planners and find a date two months in advance that is good for the both of us.  They understand when I am too sick on a planned day and have to cancel.  They believe me.  They are not afraid of me.  They accept me for the person I am NOW and whatever may come my way, they are going to BE THERE FOR ME.

I understand those whom have had to “drop out” of my life because they just could not take hearing any more bad news.

I have heard that if you end up with two or three people in your life whom you can truly call a friend, then that is really all that is important.

I guess I am still doing okay.





You Are NOT The Only One

(As Invisible Illness Awareness Week continues, I am dedicating my posts to those with Chronic Invisible Illnesses, and to helping those who may know of someone with an Invisible Illness better understand them.  It is an honor for me to be a part of this cause!)

Not only do I blog about chronic illness, I “talk the talk” as well.  Having been chronically ill since 2003, I seemed to have developed somewhat of a “sixth sense”.  it is weird, but I have this instinct for being able to “see” people who have Invisible Illnesses.

This summer I was getting coffee at a Dunkin’ Donuts and I saw this pretty young woman carrying her infant in the removable car seat.  Everyone was remarking how beautiful the little girl was and she had one of those traditional names like Charlotte or Lily that I love.

I said to the woman, “How are you doing?”, and I told her how I remembered how heavy carrying a 20 pound car seat with a ten + pound baby was.  She said, “Yes it is hard and…it’s not just that…I have M.S.”  I told her that I had Lupus and I had Rheumatoid Arthritis when my son was born.  “You did?  You do?”  I told her my story, the short form, about how I used to have to crawl to Tyler when I could not walk and Tyler was crying or needed to be changed or fed.

And then, she started to cry.  “There’s no one else like us in the world!”  And she broke down.

I put my arm around her.  “Aren’t you on any support groups for your M.S.?”

“Oh, no. Those places are just depressing. People just moan about how bad they feel.  And they don’t understand what it is like to have M.S. and have a baby.”

I guess I had been living in a bubble.  I had thought if you had a major disease in this day and age, you would be on at least one internet support group.  And that if you were a mom with a major illness you would be on several!

But I live in the world of Social Media.  I am a blogger, a tweeter, I am on Face Book, Google+.  I never would have made it, literally, not have been on this planet today without the support of my friends that I have found on the internet.

“Rachel, you are wrong about you and I being the only ones!  There are hundreds of thousands of women just like us who are raising children while dealing with not just one disease but many!  They are doing it every day.  They are getting through it, and you will too!”

I told her about sites like But You Don’t Look Sick and Chronic Babe.  That they weren’t the depressing, “poor us” sights she thought they were.  That they were fun and the people on them were interesting and cool and beautiful and they were from all over the world.  And that we laugh and that I have made REAL friends that I can share my life with, and yes, when I am in trouble, I have their phone numbers because sometimes I need to speak to someone…

Just like me.

BlogHer Conference 2012: Looking Ahead and Wondering

For those uninitiated, the BlogHer conference 2011 is coming to a close.  To read my devastation over not being able to go BlogHer’s past click here and here.  This year I was only able to once again, watch from the sidelines.  Next year, God willing, I will have the money to go.  We will have Grant’s disability money and we will hopefully have mine.  It won’t be a lot but we will be like millionaires compared to the way we’ve been living.  We talk a lot about traveling and Grant knows that this is the third BlogHer that I have missed and he wants me to be there next year very much.

(You may want to stop reading here if you do not want to be shaken to your core and be made very upset.  Okay, you have been warned.) 

People always say that I have got to be more positive, more optimistic.  Well friends, I tell them that I am not pessimistic, I am REALISTIC.  These past few weeks I have come the closest I have ever felt to dying.  Two weeks ago I was having a fever every day, freezing, sweating, nauseous.  I had wounds that were not healing, that would bleed profusely by me absent-mindedly scratching a mosquito bite.  The pain was off the charts, the medicine for it, a joke.  Two weeks ago, when my fever was running and I could not get out of bed or barely speak, I swear I felt God next to me.  “Do you really want to die?  Well here is what it feels like.  Be careful what you wish for.  Death is not the peaceful, calm you think, at least getting there sure isn’t”.

I was crying.  I thought of Grant and Tyler and my cat.  I thought about the things I enjoy, just for ME, writing this blog, my voiceover work, my book club, Twitter, Google+, and then I realized…life is fun.  Not just with Tyler.  There are fun things in MY life.  There are still books to read and places to go and candles to be lit and beautiful but cheap things to have. Money is coming.  I WILL travel.  I will take Tyler to Disney World one day.  And then I said to God, “Stop!  Stop!  I don’t need to see this any more.  I don’t want to die.  I thought I did but I DON’T.  I want to live, not just for Tyler but for ME, God please let me live, I still have living to do!”

And then, it was either God the steroids or both, I got better.  Not better like I am trying out for the Olympic team but…my fever went away.  My mouth sores were gone.  My wounds healed.  I bought that “Imagination” candle I had been thinking about from the Disney Store and the Alice in Wonderland Vinylmation and my surprise “Buy one get one free” Vinylmation “Pete” from the Mickey Mouse Club House show.  And all three things are with me right now, bringing me joy.

Last Tuesday, I went to the hospital again.  I had horrific abdominal pain, with all of the symptoms of an appendicitis.  Unfortunately whenever I go to the hospital I am such a complex patient that they often do not want to treat me.  They gave me an ultrasound on my stomach and then up my…well let’s just say I could have had a career in pornography, I took it like a champ.  There was a lot of waiting, a lot of blood-letting and peeing in cups.

Throughout this my feet were swelling, like they have never swelled before.  They were purple and red, as if I had not been walking on them, as if they were starting to clot.  They looked like….like the way my father’s looked as he lay dying.  Like the feet of death.  The only feet I had seen looked like that were my father’s.  All discolored, painful.  I kept asking if they would examine my feet, if they would treat my pain, but they didn’t want to do much until they figured out what was wrong with me.  Alone, in a private emergency room, I started to pray, I started to beg and cry.  “Dear God, Jesus and Daddy.  I have a little boy that I have to make it for.  You can take me, but please, not now, not until he is a teenager and he no longer needs his Mommy.  That’s all I want!”  People on Face Book were praying for me, people on Twitter and Google+ were praying and I thank them very much.

And suddenly, I was getting better.  My feet cleared up.  My diagnosis was spastic colon or a possible flare-up of my Ulcerative Colitis.  That was a lot better than, “You need surgery on your BLANK or your BLANK.”  They had been almost positive I was going to be needing surgery of some kind!

And then I was discharged.  And Grant and Tyler came to the hospital to take me home.

So, where was I going with this, what the Hell does this have to do with BlogHer’12?  Well, the truth is I am being REALISTIC when I say I may not be there…or here.  How lucky can I get?  When God wants me, he wants me, I can only continue to pray that I live to finish out being Tyler’s “Mommy”.

Really, where will ANY of us be in 2012 anyway?  Any one of us could get into a car accident tomorrow.  Our plane might crash, we could get breast cancer.

Yes, any one of us.  But for people like me, with Lupus and other serious, worsening chronic conditions, we REALLY have to ask ourselves, where will I BE?  Will I even be here to make it to an event that for three years now has been so unobtainable?  When I have the money for next year’s BlogHer…will I really…be here?


Wake Me Up Before I Go-Go

You know that title isn’t even funny?  Even though it is?

If you read me regularly, follow my tweets, or are on my Google+ (as Emily Cullen), you pretty much know what’s going on in my life at all times.  Lately I am starting to have as much trouble as Job himself.  As you can gather from the title, I am having a horrible time staying awake for much of the day!

About 20 years ago I was in a major car accident.  The EMT said to me, “I don’t know how you were able to walk out of that.”  Yes, I was extremely lucky.  Always wear your seat belts! Anyway, about two months later, I was finding major difficulty getting out of bed in the morning.  I felt as if I was waking from a comatose sleep and I was extremely foggy. Frightened that my doctors might have missed something, I made an appointment with my family doctor.

“Have you experienced any kind of trauma lately?”, he asked.  I told him about the car accident in October and he told me that my body was still reacting to what I had experienced.  “See if it does not go away in a month.”  And sure enough it did.

I am really hoping that this is the same kind of thing.  I have been experiencing new trauma on a daily basis, who would want to get out of bed, much less, stay awake?  But lately, it has become worst, by the day, in fact.  I noticed on Monday that I needed five cups of coffee, some with ice cream in it, just so my eyes would stay open…while driving.  Yes, driving is the worst.  Like a newborn going for a car ride, my body wants to sleep..except it is me behind the wheel!  This, need I say, has been most distressing.  I don’t drive more than an hour any where due to my pain and fatigue, but this is downright scary.

I can drink a cup of coffee and go right to sleep afterwards.

Yesterday, I didn’t go anywhere but I was having trouble staying awake anyway, from about 3:00 in the afternoon onwards.  I took a nap, but it was not enough.  I took another nap at around 7:30 p.m. for about an hour.  I still could barely stay up.  I made Grant go out for ice cream.  “But you told me that you were on a diet, that I shouldn’t buy you ice cream, even if you begged!”  “Do you think I am fat?!  This isn’t because I want it, this is an experiment!!” I hissed.

Grant ran in terror and fear to the supermarket.

I put the ice cream (coffee) into my coffee and put in some mini Reese’s Peanut Butter Cups.  I fell asleep while drinking it.

“Go to bed, Emily, I will deal with Tyler,” Grant said, both scared and sad.

So this is where I stand.  Or sit.  Or lay.  Or sleep.  Tomorrow I see my Rheumatologist.  He is supposed to judge me to be well enough to take my immunosupressant drug, Orencia on Monday. Or he may want to switch me to the newest drug for Lupies, Benlysta, since I seem to be failing on Orencia.

And now I have this narcoleptic-like issue to deal with.

As always, I will keep you posted.