Extraordinary Machine

If there was a better way to go then it would find me
I can't help it, the road just rolls out behind me
Be kind to me, or treat me mean
I'll make the most of it, I'm an extraordinary machine

--Fiona Apple

Quick Health Update:

• Started on immunosuppressants
• Still taking lots of vitamins!
• My hemoglobin and iron levels have gone up (yay! no blood transfusion!)
• The rest of my meds are starting to work
• I’m loosing a LOT of hair and have bruises everywhere
• Doctor appointments can now be every 2 weeks, thank goodness!!

A teething 7 month old:

Lizzy is teething! Two top teeth are starting to make themselves known. So on top of the normal freeze teething rings I’ve added some things!

This little baby works wonders! They come in sterile one dose little vials and are all natural.

She actually likes the taste of it, or maybe it has not taste. Hmm, now I might have to taste it. Then we have her favorite teethers! Her Sophie the Giraffe from Vulli and her Born Free teether.

Granny got her a Taggie blanket because Lizzy will find the tag on anything (clothes, toys, bags) and play with them, chew on them, and just be all about them.

New product alert!!

I have the pleasure of getting to try a new product and share the results with you all through Vocalpoint! I am doing a trial on Downy’s new UNstopables in wash scent boosters. I’m trying out the fresh scent but they also have it in a fragrance called lush.

It smells super yummy and I’m going to try it out tomorrow for the first time! It says it will hold the fragrance for 30 days! I will keep ya’ll posted.

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.

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.

• The Spoon Theory
• My roulette kind of life
• Pay no attention to the girl behind the smile

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.