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Love Papa

In 2019 I did something I honestly thought I would never do. I got a tattoo in a noticable spot. My right forearm.

What did I get?

Love Papa in my Papa’s handwriting in a brown to match my freckles.

Why did I do this?

Because my Papa was my world and seeing this every single day brings me joy. The signature is taken from a letter he sent when I was a YMCA camp councilor at 16.

I am so happy I did this and thankful for technology because I only had a picture of the letter to show the artist and think he did a bang up job recreating it perfectly.
He had to enlarge it and study Papa’s handwriting.

This is the picture I sent him and I was unable to find the card in question when searching my memory box this summer. So- this picture taken from an Instagram post might just be all I have left.

The lesson learned here is take pictures of memories because they can be damaged, stolen, or go missing.

Cheers,

Crystal Jean

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When the ER strikes…

A Spoonie tale with a happy ending.

After three tough days and two awful nights… I ended up in my least favourite place, the Emergency room.

You never want to have to go to the ER for pain- you especially, however, never want to go to the ER for pain in a totally different state.

There were so many ways this could have gone terribly wrong and it started out looking like a complete waste of my time. It was three and a half hours before I saw the Resident.

My medical history is complicated, at least a half-hour to get out, and rather unbelievable. I have heard more than once, “Oh, there is the open heart surgery scar. I kind of thought you might have made that up.” (Yes, that has really happened…)

 

The Resident had to go talk to the main doctor and I admit, I was expecting the worst case- where they basically insinuate you are a total liar/drug addict and throw you out without helping you in any way.

I was also dreading the procedures that I knew would cause my already high pain to go off the charts.

What I got, was a miracle.

 

The doctor listened to me, believed me, and treated my pain going off the assumption that what I was telling him about the body I live in was the most likely cause of my swelling and pain. He didn’t argue with me when I explained ‘this is not my chronic pain, this is an acute incident.’ He agreed with me and told me that the plan was to treat my pain, rule out anything emergent and get me home.

Ruling out anything emergent can mean a lot of things. It is an ER doctor’s way of making sure to dot the I’s and cross the T’s.

For a Lupus patient, the biggest test is checked my kidneys to make sure everything was good and taking a ton of blood before we did the first round of pain medication. (You live and die by that urine test as a Lupus patient.)  If that urine shows anything off, medicating you can be rather dangerous.

I wasn’t worried, even though my kidneys did hurt. Abdominal pain is strange, it radiates out to your back, pelvis, hips- it is out of control. What usually happens when you treat it can be incredibly frustrating. The first round of pain medication isolates the pain by removing the radiating pain and you suddenly realise exactly where you are hurting. And because it is the only spot now hurting on your body, it makes the pain ten times more potent.

For me, it was right where I had expected. That evil left ovary.  Now, 90% of the time doctors are not willing to do another round of pain medication for just one spot, even if you would rate the pain there above an 8. They gave you one round of pain medication and expect you to sort it out with your medication at home.

I somehow managed to get a doctor who understands pain. When I explained what was going on and asked how we could fix it, he decided to go ahead and do another round of pain meds so that we could bring my pain level back down to at least a 6, which is manageable for me with my home medication.

 

Sure enough, before the nurse had even left the room after giving me the IV pain medication my pain was down to a 7 and as I continue to blog the pain is continuing to go down.

Just this alone makes this ER visit spectacularly wonderful.

But tonight I didn’t just get an awesome doctor, I got amazing nurses. All the little things added up to make this trip remarkable.

*When I told the nurse I needed oxygen when given a medication she didn’t argue, she didn’t go check with the doctor, she put me on the oxygen.

*When I told the nurse he could try for that tricky vein on my left AC but probably wanted to blind stick it a bit lower- he listened to me and went low and pushed through the valve and we got all the blood we needed and a 20 in me that flushed beautifully.

*When I told him that as strange as it sounded he needed to take the Blood Pressure cuff off and put on a regular tourniquet or the labs would be off, he nodded and did just that.

*When I mentioned that fluids needed to go on the IV or it would go bad, the nurse put some on right away. She didn’t argue with me, or tell me not to worry she had just flushed it.

When I let the nurse know that they might need to do a cathader procedure if I couldn’t get her the urine she needed because I knew she had to have my kidney scores before medication she nodded and said we can do that. (I avoided that, thankfully, but the point is she listened when I gave an alternative.)

When I asked for a bag of fluids because I had only urinated once all day but drank over 100 onces of water and had Sjogrens, the doctor said, ‘absolutly”.

Sometimes things go right.

I had forgotten that, to be honest.

Now I am waiting to be discharged and typing this up because I think it is important to not just blog about the ‘awful’ ER visits.

Sometimes things go right. Sometimes it’s a one stick night.

I freely admit that I am guilty of not remembering these nights as much as I should.

My BP started out 155/114 high enough to set the alarms off.

Right now it is 99/70 (close to my normal of 100/70)

My pain was a 9, and is now a 6.

I will probably not get to bed until close to three thirty in the morning. But, I will go to bed with my pain under control for the first time this week.

It sucks that I have to be here and I am not sure that I will be able to do what I wanted to do with the kids tomorrow.

But, I just had a great ER visit. So, whatever I do tomorrow, buying a lotto ticket should be on the schedule. 😉

Cheers,
CJean

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Endo Diet update.

With my endo I have been experimenting with my diet. I have cut out corn and anything but natural sugar (honey and berries are okay)! I have cut back on dairy and am only eating healthy grains. I’ve upped my protien and good fats.

I’ve cut out pork and limit red meat.

With my GI bleed and issues I am still mostly using shakes but I did manage to get some good food in me while in California to put on my 20th reunion.

It was hard, I am not going to lie. I passed sooo many In & Out burgers and just wanted to pull over.

But, I did my best to stick to my diet.

Pic 1 is grass fed organic steak with bears and carrots grilled and toasted rosemary potatoes.

Pic 2 was my snacks while in town. I seem to do fine with ranch so I pick out the good stuff and roll with it. Rainbow carrots are the best, so yummy. Peppers are my true love. Sugar peas work for me.

Pic 3 is organic roasted chicken with the beats again and I tried brussel sprouts but couldn’t really eat them to be honest.

Okay, I did steal some bites of this amazing lemon cake my girl made just for me.

It was a huge hit at the reunion. If you need a cake and are in California I will get you in contact with her. It was AMAZING.

My other meals were shakes or vegetables and proteins. Ch

I ABSOLUTLY noticed that I had more energy eating healthy. Sadly though it did make the GI bleed worse so I am back on a liquid diet until the end of this month when we figure out what is going on with me.

It could be as simple as a polyp or as awful as my cancer is back. (They found a large cancerous polyp stage 0 in 2012, I got very lucky)

I can verify my swelling was better without sugar, corn, and soy.

But, it is early in this trial yet. My pain was the same.

It is such a complicated situation and unique to every endo woman.

But, never give up looking for what works for YOU.

Cheers

Cjean

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Dance night!

We all went to the elementary school for the Halloween dance. It was a loooong afternoon of lost unicorn make up and me trying to tame my hair and Dad rushing home. But, we made it and had an absolute blast.

We had a shadow and a unicorn. The original idea which would have had them matching will have to wait till next year.

I love that they each decided on their own costumes.

Unicorn costumes were rather popular. But, it didnt bother my girl. She loved it! The world needs more unicorns.

Yes that is my daughter leading the karaoke on stage.

Jude found Harry Potter

I was a cat! One of my fanfic peeps got my cheeky nod to Hermione. I was vert impressed.

Lenna was our dancing queen

Daddy came as a dentist!

He freely admits he cant dance. As I cant either let’s hope a miracle happens for our kids.

My favorite moment was when my kids dance like no one was watching.

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As soon as I can break into Aaron’s phone all evidence of the Macerena will be erased.

I ended up in the hospital after this adventure. My BP went wonky and I fainted twice and fell hurting my already swollen endo belly.

But, all the pain, all the awfulness of being called a drug addict by a doctor, was worth it to dance with my kids.

I do not know how many days, months, or years I have left. I want to make memories outside of doctors offices and Emergency Rooms.

So, swollen belly or not. I danced the night away- with the help of pharmaceuticals- I won’t lie. That two hours to get ready had me wiped long before I got to the dance.

Worth it.

Cheers

Cjean

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Recipie for my ‘Fall Shake’

I use Vega Vanilla Protien and Greens

(AMAZON PRIME IS THE BEST DEAL)

Also found at Target.

Okay here is the recipie:

1 scoop vanilla Vega

3/4 cups frozen mangos

3/4 cups uncooked raw carrots

2 tbsp flax seed

1tbs chi seeds

1tsp cinnamon

1tsp turmeric powder

1 1/2 cup almond milk (you can add and subtract to taste or use something else besides almond milk)

Ice to taste (I usually only use 2-3 cubes)

Blend and enjoy!

Play around with it. I personally love this shake a lot.

Cheers

Cjean

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20 Year Reunion!!!

It was a massive success. It was also a ton of work. Three years of dreaming and planning and six months of working with Suzanne who volunteered her talents as an event planner.

But we pulled it off. I wanted to share the pictures with some stories so you can feel like you were there with me.

First: I arrived with the flowers three days before the event because we had to get them in the vases.

DETHROWNED INSTEAD OF DETHORNED. 😂🤣😂

It was so much fun helping to make my friend Suzanne’s vision a reality.

We did a cornhole toss to raffle off and I made rather a mess of myself helping to paint it.

All the alumi signed it. Bummed I missed getting a pic of it finished. Hopefully, we can track that down through the winner!

There was also an amazing Lion painting that was donated.

What Suzanne pulled off on the budget we had was a miracle. We kept tickets as low as we could and got a huge discount on the venue thanks to another alumni and committee planner.

She knocked it out of the park on these roses. They were are school colors and beautiful. They were also named `friendship roses’ too perfect right?

The balloons also worked because of her. I might have begged for them, but she made them look amazing. Thanks to another committee member for the helium tanks to blow them all up. Appreciate you Peter.

The photo booth was a huge hit.

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I found those the day before for 1$ and had to get them. Cheers to Michael’s clearance bins. I also got the bubbles and Suzanne found the sticker tape to put around them in our school colors.

My dress was the perfect color. Which was amazing.

The necklace was originally given to me by my Papa for my 17th birthday and I wore it my entire senior year and all through my 20s. It was lost and this version is the one I had made for his funeral in 2008.

Baby Crystal Jean and proof I can not smile sometimes. I think my hair is about the same length and just like highschool I was working the door getting everyone in.

It was so fun to steal a Letterman jacket that I wore often 20 years ago. Eric wrestled and that jacket was pimped out. So, when he got too hot or had to wrestle guess who kept track of that thing? Me, and when I got cold he handed it over with a laugh and a smile.

I was lucky to have boys who were my protectors and like brothers in highschool.

These guys were who I spent most of my time with. I traveled a lot with sports teams (I was the bookkeepers girl, the coaches had known me all my life) and these are a few of the amazing boys who watched out for me. Getting to thank them and see them and meet wives was a highlight of the night.

Sadly, we still can not take pictures together without dying of laughter.

Horrible blurry laughing pictures aside let’s get back to the event. The food was awesome but the deserts…..

The deserts were so yummy and all made by Suzanne. Pumpkin pie, chocolate and vanilla cake.

Then there was the lemon rose cake.

That lemon cake was my special request, but the decorating of it was organic and unplanned. She decorated the cake this way in honor of my Nana.

My Nana baked me a rose cake for my 17th birthday. We had extra roses and she surprised by doing this after I told her the story.

I will admit to some tears seeing this finished cake.

Here is why it meant so much to have this at the reunion:

Nana worked at my highschool from 1973 to 1997. She was honored with a rock at the memorial table. As was her best friend. Yes, I was named for her. Jean was her middle name that she went by because she was named for her own mother. The name? Lenna. Yes, my daughter is the third Lenna and named for my Nana.

The memorial table was beautiful. We had 50 white roses in a vase in the center and the six faculty rocks there for everyone to look at. Three on each side.

Dropping off her rock was super emotional.

Nana grew this plant in her backyard and was always so proud of it. It was just too perfect.

I had a good cry and got to say goodbye to Nana and many faculty who meant the world to me.

Thank you class of 2009 for this amazing spot on campus.

As I was working the event I didn’t get many pictures, but like a true 90s child I have the memories.

You can look up the event with our hashtag on Instagram #AHS20YR789

Until next time AHS.

Cheers

Cjean

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No pelvic pain clinic.

It seems to be official. There is no pelvic pain clinic anywhere in Washington or Oregon.

I am about to change that. If there are any Oregon or Washingon pelvic pain or endo women interested in a new way to treat pain. I want to talk to you.

Then I am going to figure out how to get Oregon University Hospital to start a clinic like I had in Denver, because I refuse to settle for a life of pain when I KNOW how to help.

PLEASE SPREAD THE WORD.

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My journey to healthier curls.

The curly girl method. Curly Girl Explained
I am not gonna lie. It sounded crazy. Not wash your hair? Mostly use conditioners. Throw away half my hair products?

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But, I live in Washington State now. Curls are going to be the norm. The first few months I rebelled. Side braid for the win

But my hair was getting dry and my split ends had split ends.

The first cut was a bust.

Next was a bit better but I needed more layers.

Groupon for the win I got a cut that brought out my curls.

But apparently only in Virginia….

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Nope, not kidding. The curls have gone flat since I got home.

Now that I am back to the drawing board. The products that worked so well in Virginia do not perform their best here.

See my previous post here

My only winner on both shores and high altitude is my magic spray.

You can get this amazing product HERE
Tell them Crystal Jean sent you!

I admit- I resorted to straightening my hair just to feel pretty and not have to fight it. I do love my hair both ways and I am never going to limit myself to one or the other.
See my blog post of shame here

Back to the curly girl dilemma.

I am double conditioning and not using even the wide tooth comb. I’ve given up on bouncecurl, it simply isn’t working for me here. It did in Denver, never in Washington. I hate when that happens.

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They have a hairspray everyone is raving about that I will save up my pennies to try. It is alcohol-free, check it out here

I’ve also had to learn that less is more with my righteousroots oil. The amount I used in Denver leaves my hair greasy here.

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I’m still trying moisturizing shampoos and using what I call the ‘Blake’ method. Deep conditioner on my roots as I scrub my scalp. (I read somewhere that Blake Lively puts mayonnaise on the end of her hair to protect it when she washes it.) Or, I just made that up, I am honestly not sure. Let me go look….

Nope, it is true:
“My mom taught me this really great beauty tip,” Lively told Byrdie. “She used to put oil or mayonnaise on the bottom half of her hair before she would shower. That way, when she would shampoo, the soap wouldn’t strip the bottom of the hair and dry it out, making it brittle.”
The article can be found here and claims to have a better version of this crazy sounding trick.

I still have to scrub the bottom of my skull when in a lupus flare, but I am super careful not to let the castile soap touch my roots.

I think I need to read up on hair density testing. I know I need a few more products that I will be adding to my birthday list.

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For those of us on a budget, I love this site: Products that won’t break the bank

I am taking my biotin and vitamins in hope that I can get my length back and do longer layers.
So, it’s all trial and error. But, something has to give with the back of my hair. This is a mess.

Totally tipping my hair back to make it look longer. 

And I have to work on my scarf skills at night.

All the blogs and Instagrams I read seem to show my same problems when they started. It’s a commitment, rebuilding your curly hair.

I think the next thing I will be trying is a homemade cleanse of some type.

My dream curls look like this. Her story can be found here

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Obviously not blond, and yes I know I will probably never have these perfect ringlets, but I said ‘dream’ what are we if we are not dreamers?

Cheers

Cjean

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Timber….

A story of why writers for hospital drama shows should interview me. 
I had an appointment with the kids to get all of our ears checked from the viral infection.
Things were going well, both kids were pink ear free. I was stressed as my kids had played the- I am still hurting and sick card- when they were obviously over their virus.

It was my turn on the hot seat.

(I did a condition today but put in no products, I didn’t have the energy or time and ran out with wet hair, ugh.) 

My blood pressure was high, I had a migraine, so I wasn’t too concerned. We talked about my GI bleed, the fact I had lost 11 pounds in a short period of time because it was so hard to eat.

We decided to do some blood work just to be on the safe side. My migraine was easing off and I was putting some pain cream on my sore belly and back. I had leaned down and back up but do not remember feeling dizzy.

The next thing I remember is being on the floor, doctors, nurses, and my two children all around me.

I knew it must have been my blood pressure so we took another reading of my BP and Pulse. Sure enough, I had dropped 20 points on top and 10 on the bottom.

But I was dizzy and it was obvious to the doctor that something was wrong.
Pale, clammy, shaking.
My blood pressure kept going up and down.

Suddenly, we are going to take labs turned into: you have to go to the ER and we can’t let you walk the 100 feet to the next building so we are calling an ambulance.
Yes, they seriously called an ambulance for me to go to an ER that I loathe and hate that was RIGHT NEXT DOOR TO THE CLINIC.

I had my kids, I was not stable to walk or drive. If I had walked out I have no doubt I would have had a nice visit from CPS.

So, we sat, my kids and I- we sat in that waiting room for an hour and a half while I tried to track anyone down from church who could come get the kids. Finally, admitting defeat, I called my husband who rushed off to catch two buses back to his park and ride spot so he could get to us. (He works in Portland but takes the bus over the bridge from Vancouver.)

By the time the ambulance showed up, I was feeling fine. My pressure was still going up and down, but I could have made it home just fine- if they had let me.

The ER doctor left a lot to be desired. He told me he was going to do a groin blood draw.
I refused.
He told me I had no need for an IV.
I requested he give me a bag to see if it stabilized my blood pressure.
As an ultrasound was the only way he was going to get his ten vials of blood he agreed. Smart man, he was not going near my groin for a blood draw.

They got me in one stick and all their blood. They took enough to lower my BP again.

He refused me nausea medication.
I sat and watched my endo belly grow and my pain increase as the bag of fluids ran into me and cramped up my gut.

I NEVER asked for pain medication. He, never even asked why my pain was at an 8 when the nurse demanded a number.
He never checked me for a concussion even though I hit my head. No imaging was done because my labs came back fine.

I asked once more before they yanked the IV for the only nausea medication I can have, which he refused and was discharged because- as I had told the doctors and nurses- I was not bleeding out.

It was a simple case of my blood pressure doing its song and dance that it likes to do when I am in pain and dehydrated.
Dehydrated for my body that is, my labs were perfect, but my body thinks it is dying of thirst. That is sjogrens syndrome. You drink water all day and it just seems to disappear on you.

It was another awesome example of why I despise and detest St Johns ER in Longview Washington.

If I could sign a DNR to never be taken there again I would.

I have had a lot of crappy hospitals over the last twenty years of chronic illness. This one takes the cake for the worst one yet.

I even despise nurses there. I LOVE nurses. Practically every Doctor who works there is rude, unhelpful, mean, and dangerous.

I had a doctor give me 60 Toridal after I told him that I had already taken three naproxen that day. He assured me it was safe. I have a GI Bleed. It wasn’t. My GI Doctor was livid.
(This was the doctor who had me in tears for five hours and refused to do anything to help with pain or nausea besides the Toridal I should NOT HAVE BEEN GIVEN.)

Today left me very angry. I should be able to refuse being treated at an Emergency Room I do not feel safe in. I shouldn’t be held captive in my doctor’s office just because I fainted. Truthfully, I faint a few times a week from my blood pressure being unstable. Usually, I am able to lay down as I faint so it’s not a big deal.

I lived three blocks away. Let me walk home if you are so afraid of me driving.

This is just another stern warning to anyone. Never, EVER, faint in a hospital. It never ends well for you.

Now I have a nice swollen endo belly, a sore head, and am even more ticked off at the utter lack of CARE given at this ER.

If you live in Longview Washington and you can- drive to Salmon Creek or any other hospital in Vancouver. Your life might depend on it because even if they find something at St. Johns, they have NO SPECIALISTS ON CALL.

Oh, and as the cherry on the cake of this absolutely fabulous day. My blender died.
Dead.
So no dinner for me as I am really only keeping sips of protein shakes down with sips of water. Week two of my gut being a total tool hasn’t been fun.

Soonest GI can get me in to do an upper and lower scan is 10-31: unless I really do become anaemic I suppose.

Going to try and get some sleep before something else goes pear-shaped.
Cheers,
Cjean