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.

The Wolf

It has been said that a wold will devour it's own leg to gain freedom from a trap.
And even though it may die of the self-inflicted wound, it's free.
Wolf, the word, in Latin is lupus.
Lupus, the disease, is an auto-immune disorder in which the immune system attempts to devour the body it was designed to protect.
I have lupus.

Anonymous

A week of firsts

I know I am still behind on posts and updates so I am going to do a quick personal overview of what’s going on and then get into the fun happy things!

1. I am currently going through rounds of testing to hopefully find out what is wrong with me after over 10 years. I don’t know if it’s serious or not but hopefully Monday will show some answers.
2. My mothers job was up in the air for a month or so, but thankfully God came through and she got to just do a lateral move doing pretty much the same job but for a different department. Plus, she is going back to school! So proud of her!!
3. Josh started a new job and my job is expanding. Lots more work stress there as well as time.
4. My beautiful sis-n-law is a college grad! Super proud of her!!
5. My best buddy/sister from another mother is FLYING through beauty school with multiple gold stars right behind her!
6. A good friend is getting awfully close to baby time! Go tell her hello if you get a chance @ Pure Joy and Adoration

Now for some fun stuff! This has truly been a week of firsts.

I had my first Mother’s Day (w00!).

This is Drunny. He is a dragon/bunny hybrid and now lives at my desk. I also got a very sweet card from my loves. Then we had a nice lunch and Red Robin and Lizzy ate her teether :)

 

Elizabeth rolled over!! Sadly I have no pictures of this but it was an awesome addition to my Mothers Day. I do, however, have cute pigtail pictures!

Next, Elizabeth decided she wanted to start feeding herself. So now all you have to do is hand her the bottle and she takes it and goes to town!

 

Okay so , I’m exhausted from everything listed above and desperately want to just go lay on the couch with my hubby while the little one is napping. I will try and update soon!

Where there is an up, there is always a down. Where there is a zig, there is always a zag.

 

I just put Lizzy down for the night and couldn’t help but let my mind settle on…well a lot of things. My amazing, brilliant, and determined husband got a new job, which he starts in a little over a week. My mother is in the middle of a possible lay off, undeservedly in my opinion (I may be a bit bias though). One friend brings a baby into this world and another looses a parent. A gain, a loss. A win, a lose. A high, a low. Tears and laughter.

I’m currently reading Crazy Love by Francis Chan and the first chapter is a lot about “Just Stop and Think”. Notice the world around you, be IN it and not just consumed with yourself and what chaos is around. I’ve been working on that, and letting myself feel the awe of day to day things. When I start to get mad, upset, or consumed by one thing; I stop – take a second to breathe – and notice something that is amazing about my surroundings or life. It’s a simple concept, nothing radical, but how often do you actually do it? Step outside your own mind and notice what is right in front of you? I encourage you to try it. I also highly encourage you to watch this clip.

Unexpected Delays

I know it has been a long time since my last post but life got the best of me. Elizabeth got sick, I got sick, then I stayed sick, work got hectic, J had new job opportunities and studying, and at the end of the day it was all I could do to make dinner and get the house picked up. Some things had to be put on a back burner for a bit and this happened to be one of them. I’m attempting to get back into the swing of it though so stay tuned!

Elizabeth will be 5 months old on Easter! Time has flown by but she is absolutely amazing!! She is very vocal and entertains herself easily. She is almost sitting up unassisted but has almost no interest in rolling over what-so-ever. She gets onto her side and grabs what she wants and then is good. We have started experimenting with rice cereal, but only on occasion. She likes it but only when she’s in certain moods. In my last post I talked about trying out the Up & Up brand of formula. We’ve been using it for about a month and half now and nothing seems to be different than the Similac. Since then we have tried the Up & Up diapers and are about to try their wipes as well. Overall it is cutting our “baby bills” in half!

Lizzy got a few new toys. A jumper, a play gym, and an aquarium soother. She loves them all and uses them daily!

As you can see she is growing by the day! Hair accessories have become a constant because, well, she has a lot of hair! Plus, it has my curl to it so it tends to be a bit unruly! She’s beautiful in every way.

I realize that this has been a mostly picture post but today has been a quiet day for me with lots of thoughts swimming in my head so pictures will have to do. I will try to update again soon, hopefully this week!

She is blessed

She is clothed with strength and dignity; she can laugh at the days to come. She speaks with wisdom, and faithful instruction is on her tongue. She watches over the affairs of her household and does not eat the bread of idleness.  Her children arise and call her blessed; her husband also, and he praises her:  "Many women do noble things, but you surpass them all." – Prov. 31:25-29

So my plan did not go as I would have hoped. Lizzy woke up several times last night in frustration. She couldn’t breathe through her little nose but couldn’t sleep without her thumb in her mouth. So, mommy stayed up with her from about 2a.m until our alarm went off. We went about our normal morning until she spit up a few times and was just very unhappy. At that point, we decided it was best for me to stay home today instead of sending her off to daycare.

We have spent our morning snuggled in bed with her propped up on my chest so she can breathe and still rest. On the bright side, she now has an awesome cool mist humidifier!

I feel absolutely horrible each time I have to use the Little Noses saline and suction out her nose. She gets so upset! I know it helps her though, and I have to say that Boogie Wipes are just the bees knees!

The old lady of the house, Pearl, has been close by all morning. I think she knows Lizzy is sick or she just likes the humidifier, not sure which.

My sweet girl still manages to smile even when she feels icky. I managed to get her feeling good enough to sleep on her own, it took a lot of time but she’s at least resting!