Sometimes I really hate being an adult….

image image imageDon’t get me wrong, I love brig able to have ice cream for dinner if I want….but bills really are much harder than I ecpeted. Staying up to date with my SUV….house, electricity, water, cable, phones PLUS the 1100 a month we’re currently paying for the kids is just insane. Technically we could have changed the child support in February but we wanted their mom to have time to adjust because now the new child support is $75 plus the $450 we pay for insurance on them. Apparently even us giving her an extra 10 months makes us jerks. It’s frustrating when we suffer with zero extra money trying to help her and she has zero appreciation for it.

Now on top of everything out kitty Twix got bit by our neighbors dog and has a huge bite mark in his leg and we can barely if at all afford Christmas….so we definitely dont have $500+ for a vet so I’m not sure what to do. He’s suffering and needs stitches and I feel like a horrible cat mommy.

It breaks my heart when the kids ask if Twix is gonna be okay……cuz I just don’t know.

Below is a link where you can help with medical bills. Amy help is soo appreciated.

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Well…this is a first!

Usually after my immunoglobulin injections…I feel like crap for several days. However waking up with my hubby this morning….I feel great!

I’ve already showered…did my makeup and now I’m just waiting on my hubby and then I think we’ll go check out thrift stores or yard sales. Pretty much just a chill day together. 🙂

It’s been over 2 years since Heath had time like this off work. 9 days in a row! I really can’t wait to spend some time with him. I’ve missed him lots!

Needless to say I’m a happy girl today!

XOXOX

Nicci

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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

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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

Day 13….the Hubby.

So it’s day 13 of What Im Thankful For.

This may be the most important. Heath…my husband.

My husband is more than just a man I love. He’s a man I have true respect and faith in. He’s a man raising 2 kids that aren’t his own (my son Michael…and his youngest Sebastian.) He’s a man that would do literally for a friend and expect nothing in return. He works 6 days a week…happily…to provide for his family of myself and our collective group of 5 kids.

I never realized how much of a difference there was between an average guy…and a man.

I knew from our first date Heath was in a class of his own. A well educated man with 4 kids he loved and adored including one not even his? Most guys can’t take care of the kids that ARE theirs…but to him Sebastian was just as any of his other kids. Throw in he had a steady job…his own vehicle and true understanding and regard for words like Faith…Love…Trust…Respect and Loyalty? I was hooked. He was quite literally the man of my dreams.

Heath is truly an amazing person. 5 kids and a new wife with potentially life threatening illnesses is quite a combo. Truly a lot to take on. He could have walked away when he got a first hand view at my medical problems when just weeks into dating I had a sort of seizure and had to be admitted into ICU. During that stay I didn’t know who my mom was or anything else going on. What’s weird is all I remember before I completely blacked out was being extremely combative and freaking out. I recognized nothing and no one. My last memory is Heath standing over me looking me straight in the eyes and me recognizing his eyes…his amazingly beautiful blue eyes…and seeing him instantly calmed me. All he said was “Nicci…I’m here. You’re okay…calm down sweetheart.” I did. Next thing I knew was waking up in ICU. I thought for sure after seeing me literally go nuts I’d lose him. Nope. He’s still mine…

I’ve been through some some rough things in the 2 1/2 years we’ve been together.

A month after we started dating…my sister found a lump in her breast. Oct 4, 2013…my sister Cindy lost her battle with Breast Cancer. He held not only me together…but also my Mom. I don’t think I could have gone through that without him.

Heath goes soo far beyond what would even be asked of a husband or Dad (to his kids and mine)…let alone a son in law to my Mom. He’s a truly great man…and I really think Hes the best thing that could’ve happened in my life.

As him and I say:

Him: “You’re my favorite.”

Me: “You’re my only.”

Him:”You’re my always.”

Me: “You’re my forever.”

So…to my sweetheart…I love you to the Moon and back…and all the stars in the sky. 🌜⭐️⭐️⭐️⭐️⭐️🌛

*on a side note… Nov 12th marked our 2 year anniversary of our engagement. 💖💖💍💖💖

A tad late…but very important to acknowledge.

Okay…I skipped a day or 2…but let me get back to what I’m thankful for.

Sounds crazy…especially from me…but my health. The good AND the bad.

These last few years have been hard. When you have a serious medical condition…let alone several…things get hectic. Birthdays get missed….anniversaries pushed back…vacations IMPOSSIBLE. I have learned more about myself and my strength as a person in this last year or 2 than the last 30 combined. It takes immense perseverance to complete even simple tasks. But you know what? I may have been a little slow going…but I’m getting things done. 🙂

We were able to take a 2 day trip to San Diego this year! Our first vacation EVER as a couple!

Some of you may not know this…but in Feb I got pneumonia that almost took my life. I know that Heath and I did not tell many people the seriousness of the situation…but we didn’t want anyone to worry. Thankfully because of the severity they called in the top Pulmonologist. He took one look at my medical records and said there was no way this could be without some sort of immune disorder. Coincidentally he also has the best Immunologist in the state in his group.

As soon as I was released I was sent to the immunologist. Julie (yep…I’m on 1st name basis with my medical team) looked at my file for not even 5 mins and then came back with…”I’m not a gambler…but if I was I’d bet with 100% certainty you have an immune disorder. No one gets life threatening infections this commonly. No one.”

1 month later…my labs confirmed it. I have an immune deficiency. A rare one at that.

So let’s get back to now. I’m on immunoglobulin therapy 1x per week (Gammagard). $50,000 a month for my current dosage. Thank god for insurance!

I’m currently in to my 5th week of treatment and doing well. It’s been a while since I had actual hope and faith things would get better. I am soo incredibly lucky for the circumstances that put me into Julies care. She’s saved my life. She’s given me time with my kids I otherwise wouldn’t have.

Also…I have to admit this last year I found myself using my sister Cindy as inspiration. I can literally hear her telling me it’s hard…but “suck it up and do it!” it seemed cold at the time….but she was right.

Of course as always…I have Heath to thank for standing by me and giving me the strength to keep searching for answers. I love you sweetheart.

So the good…bad and ugly all merged in this case. Without the failures I wouldn’t have the solutions.

I’m incredibly lucky.

So…as I sit here tonight about to do my infusion…I thank my lucky stars for everyone involved in my care. I love you all! 🙂

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A typical morning in the Crockett house…

So as I sit in my fuzzy jammy pants to write, Heath is getting ready for work at his new shift time ( putting him and all 5 kids getting ready for school/ work at once)…which I gotta say I’m surprised no ones yelled thus far. From my bedroom at the end of the hall all I hear are the kids hurriedly getting dressed for school, hoping the kid in front of them is out of the bathroom in time for them to A: Not pee their pants, and B: be able to brush their hair (or spike it for the boys), or wash their face and brush their teeth. Thankfully with Jes (one of the triplets, at 13 we don’t allow her to wear makeup, otherwise the morning routine would be WAY different and long lasting…LOL)

As for me, since I have yet to actually sleep, I’m gonna eat some Ben and Jerrys Chunky Monkey and snuggle in my warm bed til its time to do housework. Also at some point today I need to list my grand-fur babies on Craigslist now that their weaned and litter box trained. I love those little furr balls…so I’m really not looking forward to finding them new homes.

Hope everyone has a great day today… 🙂

Nicci