Sunday, June 26, 2011

This is gotta be a good life

When you’re happy like a fool, let it take you over. When everything is out, you gotta take it in.

Hopelessly, I feel like there might be something that I’ll miss. Hopelessly, I feel like the window closes oh so quick.    Hopelessly, I’m taking a mental picture of you now; ‘cause hopelessly, the hope is we have so much to feel good about.

---One Republic

Something a lot of people don’t realize is that when you get diagnosed with a chronic illness that there is a huge mental factor. You have to accept the fact that for the rest of your life you will be sick. Every moment of every day. Whatever regimen you need to be on to be okay is a life long thing. You may be perfectly fine and live to see your grandchildren graduate or you may go downhill fast and loose the battle. I’m not trying to be depressing but this is the reality of what we, I, face. I am currently facing. I love my life, I love my family and friends. Most days I am happy and I just do what I need to stay that way. Other days, it’s all I can do to get out of bed.

Luckily, my doctor knows this. He takes it seriously and attacks it head on. That seems to be his way with everything.


My daughter is growing so fast. She turned 7 months last week and is just amazing. I can’t wait to see what her future holds.

Tuesday, June 21, 2011

A penny for my thoughts, oh no, I'll sell them for a dollar

If I die young, bury me in satin
Lay me down on a, bed of roses
Sink me in the river, at dawn
Send me away with the words of a love song
Uh oh, uh oh
Lord make me a rainbow, I'll shine down on my mother
She'll know I'm safe with you when she stands under my colors, oh and
Life ain't always what you think it ought to be, no
Ain't even grey, but she buries her baby
The sharp knife of a short life, well
I've had, just enough time
If I die young, bury me in satin
Lay me down on a, bed of roses
Sink me in the river, at dawn
Send me away with the words of a love song
The sharp knife of a short life, well
I've had, just enough time
And I'll be wearing white, when I come into your kingdom
I'm as green as the ring on my little, cold finger, I've
Never known the lovin' of a man
But it sure felt nice when he was holdin' my hand there's a boy here in town he says he'll love me forever
Who would have thought forever could be severed by
The sharp knife of a short life, well,
I've had, just enough time
So put on your best boys and I'll wear my pearls
What I never did is done
A penny for my thoughts, oh no, I'll sell them for a dollar
They're worth so much more after I'm a goner
And maybe then you'll hear the words I been singin'
Funny when you're dead how people start listenin'
If I die young, bury me in satin
Lay me down on a, bed of roses
Sink me in the river, at dawn
Send me away with the words of a love song
Uh oh (uh, oh)
The ballad of a dove (uh, oh)
Go with peace and love
Gather up your tears, keep 'em in your pocket
Save them for a time when you're really gonna need 'em, oh
The sharp knife of a short life, well
I've had just enough time
So put on your best boys, and I'll wear my pearls

--The Band Perry

Sunday, June 19, 2011

Father’s Day Weekend and Running out of Spoons

Happy Father’s Day to all you Dads out there! Fatherhood: When a good man goes dad! I got my husband the Logitech Harmony One remote for his gift from me and Lizzy gave him a beautiful letter with her foot prints on the bottom. His father and step-mother came and watched her for a few hours on Saturday so we got to actually be a couple for a bit! Very enjoyable. However one of our activities was outside and I spent a bit too long in the sun. The sun causes lupus to flare up rather bad. I went to bed rather early yesterday after a long hot bath and lots of medication. This morning I was still running very low on spoons (The Spoon Theory) but had things that needed to get done. So, like most mothers out there, I pushed forward.

Here was my to do list for the day:

  1. Coupon clipping!
  2. Feed the babe
  3. Grocery Store
  4. Target and pharmacy run
  5. Feed the babe
  6. Wipe down kitchen and bathroom
  7. Mop
  8. Laundry (work in progress)
  9. Make dinner for my hubby for F-day
  10. Feed the babe and get all of us ready for bed

I figure I’m doing rather well. I’m still in the process of learning my new diagnosis. It seems I learn something new every day. I have a big doctor day this Tuesday that includes a trip to the Ophthalmologist (apparently blindness is an issue with my meds), my regular weekly trip to my rheumatologist, and a trip to my OBGYN. Not to have a major TMI moment but they are stopping my cycle for 6 months to a year due to my hemoglobin levels, if I drop 2 points lower I will need a blood transfusion and iron infusions for up to 6 weeks. Like I said, learning things every day. Everyone I know is being very supportive and trying their best to keep up with all of my doctor appointments and new developments.

The biggest development as of late has been the child bearing issue. Lupus patients usually are on some form of immunosuppressant but with that comes issues of having children. It can cause miscarriages and malformations. J and I are in the process of figuring out how long I can be on this without having that be an issue. As well as how long before trying again would I have to stop. I have already spoken to my OBGYN about my diagnosis and she has dealt with many lupus pregnancies and feels confident she could get me through another one. I would have to stop all my medications except for 2. I feel I can do it but it’s a long ways down the road. We want to ideally have Lizzy out of diapers before having another. But we are trying to be realistic with my disease that the younger I am the easier this may be. I will find out much more detail on Tuesday with my march of the doctors.

Emotionally, I am handling this all pretty well. I have my moments of waning to shout “WHY?!” at the top of my lungs and wishing it was all just  a joke. I pray and talk to those close to me and trudge on. This is a marathon, not a race after all.

Sunday, June 12, 2011

I have Lupus

But it does not have me.

That in short explains my absence from the blogging world. I was diagnosed with lupus about 6 weeks ago. I’ve undergone so many tests I’ve lost count and I think I’ve had so much blood work done that I’m going to call my phlebotomist a vampire. I go to the rheumatologist every week, neurologist every 6 weeks, my general doctor every 8 weeks, and now a geneticist and high risk OB (no not pregnant). In short though, I have Lupus SLE and it’s currently affecting my brain and nerves.

If you do not know what lupus is, follow the link. I also would recommend reading the following articles.

Outside of my medical drama. I now have a very active 6 month old! She is rolling over in all directions she can, holding her own bottle, eating oatmeal and lots of fruits, scooting but not crawling, standing with assistance, and just gabbing away in baby jibberish.





She makes all my days worth while. That’s for sure! Now, I’m sure a lot of you that actually read this have questions. Feel free to email me or anything like that and I will do my best to answer them. I do intend on updating this more now with details about my treatment and how this journey is going. Stay tuned.