Yep…I skipped some days…but here’s day 20.

Sorry I’m a little late. I’ve been in the hospital for about a week. These damn headaches really suck at times.

So anyways….let’s continue what I’m thankful for.

I’m thankful for my Mom and sister Cin for my stubbornness.

That stubbornness has saved my life on many occasions. It’s given me the strength to fight for what I think is right….regardless of others opinions.
I’ve succeeded in my treatment because every time I didn’t give up…I chose another Dr and moved on. Yeah…it’s hard and really complicated…but I have the dream team of medical providers. I’m literally on first name basis with the majority of my team. They’re great, always asking how my family is…how the kiddos are doing in school etc. My Mom goes with me to most pain center appts so if she’s not with me, Lindsay (my Dr) immediately asks “where’s Mom?!?” I am grateful to have some really great Drs on my side.

I hear or see how some Drs treat their patients like crap…usually not even remember the patients name. *smh*

I’m really blessed to have such great Drs and Nurses in charge of my care.

I’m grateful for them all…even the annoying ones.

Any amount of time effort and money are soo worth it to get time with my husband and kids I may not otherwise have.

To see Michael go on his first date…fall in love…get married.

To see Jesika get all excited about boys liking her. Wedding dress shopping…grand babies.

To watch Jon excel in music…go to culinary school to become a chef.

To watch Steven be the next all star in baseball or football…watch him live his dream…

To watch Bam grow big and tall…sweet yet tough. That kids soo smart. He’s got the world in his reach. Watch his first date…dance with him at his wedding…

To watch Heath take on amazing things and conquer them all. To watch his face when we finally are having a baby of our own and watch him hold OUR child for the first time. To watch him teach the kids to drive or be there when there’s a broken heart to mend. Just to watch him breathe…I’m happy.

To watch my Mom get to know my kids better. Watch her hold my first biological child in her arms. I wonder…will he or she have my Daddy’s nose? My brothers drive to take on the world…who knows. Maybe start a family dinner tradition on Sunday’s. Who knows. The world is ours…whatever the future holds…I’m happy to be able to be there. Hopefully sometime soon I can at least start to get a relationship with my brother back. He’s really the kind of Uncle I want my kids to have.

Oh…about my brother…so remember that email I sent him as a last ditch effort to try and have some sort of relationship? He messaged me back! He agreed to meet up to talk! It’s a small step…but I’ll take it!

All in all…it’s been a good day…and I’m a very happy girl.

Oh…and just to update everyone…my immunologist doubled my immunoglobulin today. I’m on 10 grams a week now. 15 starting next week. If it’s raised any more I’ll be forced to do it IV. There’s a lot more risks with IV so I really hope we can keep it sub-cutaneous.

Nicci

IMG_0372.JPG

IMG_0404-0.JPG

IMG_0396.JPG

IMG_0395.JPG

You asked…I answered.

Okay…so I’ve been getting a lot of questions about my medical stuff requesting medical updates.

It’d take paragraphs so I figure a short update should suffice for now.

Everyone asks me what I’ve been diagnosed with…so here’s what I can remember.

1. Osteomyelitis/Discitis
2. IgG deficiency (immune deficiency that causes pneumonia (which I’m fighting off now, meningitis and sinus infections.
3. Hypothyroidism
4. Herniated discs…meaning L2 down.
5. Chronic Daily Headaches
6. Fibromyalgia

There’s a few more but those are the main ones.

As for Drs I see…

An Immunologist
Spinal surgeon
3 Neurologists including one for Botox for the headaches
Pain management
My regular PCP
Cardiologist

And then I also have a home nurse (well…3 really but normally just 1)

Right now I’m doing immunoglobulin therapy to try and get y immune system at least somewhat healthy. It’s hard and the side effects suck but I’m willing to do anything for more time with my family.

It’s hard when your sick to do everything required for daily life. About 2 years ago I could normally stand…yet now I can’t even cook dinner on my own. My incredible family (hubby and kids) help with what they can…and I’m forever grateful for my lovable group of helpers. I love them all to pieces.

Anyways…time to make an attempt at housework.

XOXOX
Nicci