It’s Empty…

In my quest for ‘Better’, what ever that meant, somehow, along the way, I lost it. All of it.

What is ‘it’, you ask?

‘It’ is the ability to fill my free time with hobbies and activities. Crafts. Fun stuff… things I enjoy.

Instead. I find my free time is empty.

Completely empty!

I have no hobbies.

I don’t watch TV.

I don’t read novels.

Can’t bake- no one in my family has the same dietary requirements.

My house is spotless. For real- nothing to clean here. Move along, lady. SERIOUSLY.

Laundry is done.

Yard, eh, it’s not bad.

Everything I used to do is simply gone.

I find it virtually impossible to watch tv. It’s just to hard to get involved in a tv drama. Mostly because I have found that my life is drama enough.

For instance…

Interested in medical mysteries? I’m it. I am totally not joking. Hell, I may be bald before I have all my answers.

Want cute animal stories? I live them… I have them and I love my animals.

Family drama? Pleaaaaase! I could write a book. And half of it would be unbelievable.

Reading or novels… I just can’t get interested. Same as TV. Why in the hell would I let myself get wrapped up in fake drama? I’ve searched and searched. I have audible credits… just can’t find anything that looks interesting.

Sports and working out are gone. I can’t Botox up and inject all this shit to make it relax all those frozen muscles and then be a dip shit and try and engage them at the same time. It doesn’t work like that. Not for me.

I love my blog and FB. Love helping people and reading their thoughts and successes. But I can’t live in the sick realm too long. It causes me great anxiety. It’s awful.

I don’t work 80 hours a week and no longer have a commute. I pull maybe, maybe 60 hours a week now.

So what’s left? I haven’t a damn clue. I’ll update when I figure it out.

To be honest, I never expected to make it to this point… to still be alive and healthy enough to have waking hours that I can fill with nonsense things. Hours that need to be filled with something to do because I no longer require 20 hours of sleep a day…

I didn’t expect to get better.

Xx

LS

What hair?

Fuck it. I’m done. Melt down. Can’t stop crying. I just Feel …. really ….fucking pissed. so mad I can’t even see strait.

I’ve sacrificed everything to live. To be okay. To find a comfortable space to exist in the chaos that is me. Only to find that I have lost so much hair, I now have a visible bald spot- in the middle of my head, near the front.

I just can’t. I tried to keep it together when I found it but I couldn’t hide my shock. My anger.

I’m not stupid enough to play the- what next???-game. I know thats never a game I’m ready to play.

This may seem insignificant to some but I love my hair. It was always and has always felt like a huge part of me.

I called the doctor today and according to them, my thyroid is perfect. All my bloodwork looks- and I quote- ‘amazing’. Fuck. Me.

I’m tired of being sick. I don’t want to lose my hair. I do not want to give one more single ounce of energy to being SICK. But alas, it is not to be. I hope, beyond all hope, that I find the cause before I lose it all.

Stick a fork in me. I’m fucking done.

Happy Thanksgiving.

How close was it?

I am in the hospital tonight. For my second procedure of the year! Yes! You read that right. It’s almost the end of the year. And I have had two procedures, not 4!!! My January injections lasted soooo long.

I had a looooong day but my brother, he’s a rockstar… I love that man. ♥️ he sat here till I made him leave at 9 something. We were told to check in at 1 but we were early. Not usually a big deal until my surgeon ran late… so late that I didn’t even get all my injections in. Everything Dr. Hibner could do was done. Now, I have to try and get Dr. Hastings to do the SI joint Injections at a later date. I wanted to cry when Dr. Hibner told me today but at 530, there wasn’t much to be done about it but get the other items Hibner could do, done. Hibner was cute- he said he could do them if I insisted but he hasn’t been formally trained and preferred I wait for Hastings. I love him- I opted to stay in the safe zone… I’ll just reschedule that procedure with Hastings.

Another unforeseen drawback of a 6pm procedure is that I am super tired but here I sit. 4am. WIDE AWAKE! Been this way since I begged my Brother to go home at 9pm something.

Dr Hibner said today, before my procedure, that I look the best he has ever seen me. Remember, Hibner has seen me melt, I mean M.E.L.T. D.O.W.N. Multiple times. I made/make no apologies for all my melt downs. The last 9 years have been rough but the last three have been what nightmares are made of… scary shit.

Living with diseases that most medical staff don’t believe exist, being dismissed by the medical community, exhausting Mayo Clinic… the million dollars my husband and I have paid in copays, insurance premiums, surgery after surgery, doctor after doctor, traveling to see other doctors, seeing arrogant doctor after arrogant doctor. Loosing my job of 12 years and my promotion… losing my mom.

I can keep going but the point is that I really just didn’t want to live anymore. I had reached the lowest I could go without taking action to actually end my life. Horrible, intrusive thoughts of how to do it. All because I wanted … to let go of this shadow of pain for the final time… that’s what I dreamed of. My world with no pain. A place I could find some peace. A zone where anxiety wouldn’t make me want to shred my skin just to find release. I just needed a quiet body. I needed some calm in the utter chaos that is my BODY.

It’s hard to write that. Only I’ll know how close my end was.

I know some will wonder what stopped me, why I didn’t do it. How did I resist ending the pain? …the answer is easy- The knowledge that the pain my daughter, husband, sister, bother & dad would feel would be a pain more intense than anything I had ever physically felt. And it would last the rest of their lives. I simply couldn’t choose to inflict that type of pain on them.

So what changed, you ask? I assure you, it was a HUGE combination of things. First and foremost, the love and support from my family never weakened. Oh, and friends- some amazing friends that accepted me for what I could give them. Some texted daily to check on me. Never demanding anything more. I feel like the 2nd reason with the most weight is the complete success of the blocks in January. I got months of pain management/relief. I hadn’t had months of relief in YEARS! I finally felt like I had all the pieces to my pain puzzle and it was REAL! Fucking Real! Documented by one of the worlds most respected surgeons in the Endo community. I wasn’t crazy like they told me I was and tried to make me believe. And there are treatment options still available. I quit my high stress job (with my lovely husbands support). And I finally took my power back in the professional realm. Found another less stressful job while I worked to build my consulting name. Recently, I went full time as a consultant and found a lovely business partner that accepts my craziness and I love her for it. Of course there are other amazing things that happened but those are the key pieces of change that helped settle my soul.

Suicide wasn’t the answer. I want to be clear. Suicide is never the answer because Suicide transfers the pain you feel, tenfold onto the ones you love the most. That is and was a pain I just could not inflict on my family because even if my pain ended, theirs would just begin.

I am not healed. I’ll never be healed. I’m not well. I’ll never be well. There is no end date to being chronically ill like this. I don’t have cancer that is cured. I will always be sick but it doesn’t get to always control my life anymore.

My brother told Dr. Hibner that he is finally seeing his old sister in there again. ♥️ I plan on sticking around. I’ll never be the person I was before my body hi-jacked my life but I can finish healing my fractured soul and live my life for all it’s worth. That’s all I wish for now as I fix my environment.

Xo

LS

#oldgirlintheendogame #interstistialcystitis #PGADwarrior #MMJalltheway #TeamHibnergirl

Happy Birthday, to me.

Yesterday, I survived my birthday.

<singing> HAPPY BIRTHDAY, TO YOU….

But not before having to figure out how old I was. *giggle*

<singing> HAPPY BIRTHDAY, TO YOU…

For real though, the husband had to get the calculator out because for some reason, I couldn’t remember if I was 44 or 43. Hubby did the math, in the wee hours of the morning… figures never lie. 43.

<singing> HAPPY BIRTHDAY DEAR LILLY….

I wish I could tell you I felt like celebrating. But, I didn’t. I didn’t get a cake, didn’t ask for one, and there wasn’t any fuss. Hell, we didn’t even eat dinner together. I made the kid and I grilled cheese sandwiches. And, of course the dog swiped half the kids sandwich so even he had some grilled cheese. I ate some of my stash of cashew milk, salted caramel ice cream and went to bed at 930pm. Everyone else was already asleep and I had to be at work today at 6am to grant access to the building for maintenance. I didn’t tell anyone at work it was my birthday. I couldn’t stomach the thought of pretending I wanted to celebrate with people I hardly know.

<singing> HAPPY BIRTHDAY TO YOU!

My point this year was low key. SUPER low key…

<singing> AND MANY MORE….!!!

However,

What I did get, was a sweet, sleepy ‘Happy Birthday’ wish from my husband, first thing in the morning. Then my sister called with the kid in the car and I got sweet hugs and kisses from the kid and well wishes from my sister. Then, the brother called followed by my dad. My favorite niece messaged to wish me a happy day. I also had family wish me a great day on facebook and instagram. My close friends and other loved ones all messaged me (the GIF’S were hysterical) and or left voicemails.

Driving to work yesterday, my mom visited me with an 11:11 on the screen in my car and a song that reminds me of her. It was nice she remembered my birthday this year, even if she is in heaven.

My love had the day off so he drove to town to take me to lunch. He enjoyed, for the first time, one of my little favorite gems, hidden in the center of Tucson. Then he took me for a cookie and a Starbucks coffee (he knows the way to my heart).

It was a great day. Quiet and calm. Just what I needed.

Happy Birthday to me. If this is what 43 feels like? Then, I’ll gladly give up claiming age 29 and just be 43.

And, I can’t leave with out an update on the medical procedure I’ve been trying to get scheduled and on the books with Hibner and Hastings for two months. Carina called from Hibner’s office. She said Hastings is now splitting her time between two organizations. GREAT. Because of this, She has no idea what Hastings schedule will look like and is unable to schedule until administration works out the details. *SIGH* Poor Carina. I asked her to remind administration that there is a patient caught up in their lag and I’d really like to know my date for relief. She said she’d tell them and call me as soon as she knew something. My pain has been about a 5, it spikes to an 8 but hasn’t really gone higher. This is a whole body inflammation response. Joints, sinuses, eyes, feet- everything is swollen. Hopefully I’ll have a date soon.

Until then, Pray. And, Be nice to yourself.

Xx

LS

Appointment Eve

It’s appointment eve.

aaaaaaaaaaaaaaaand

I’m fucking dying here. This pain is constant. It never lets up!

A. Constant. Deep. Ache.

And it just doesn’t stop. And you can’t find relief. I’m at a constant 6 on the pain scale now. This is my new, full time pain level. And, any spike in pain just gets added onto my already level 6, full-time pain. Which means…

I am super nauseous. I can’t eat full meals anymore. I lost two pounds. <<total palm to the forehead emoji!!>> I’m again resorting to super small handfuls of food. I alternate between looking 6 months pregnant and looking normal. My joints are swollen and painful. Zofran is my bff.

Yeah, so, the pain sucks but the worst thing for me now, is that my brain feels fuzzy again. Currently, I’m juggling so many things…starting my own business, working full-time, a 2 hour daily commute, my beautiful husband and our kid, our puppy, maintaining a clean house- to include laundry! And pain. Always juggling pain somewhere in that mix. But I simply cannot be fuzzy!

I know I had a lot more to say but my belly is finally full… yummy enchiladas and rice. Zofran to top it off, so it stays that way… and I’m heading to a hot bath full of oils and Epsom salts for a deep soak. I am trying to remember self care first. Rest. Tomorrow is only a damn consult… I’ve got to survive to the actual procedure date.

Wish me luck or say a prayer… hell, send me some good juju. What ever your thing is, I’ll take it. Tomorrow, I’ll be able to schedule my procedure and know how long I have to wait for pain relief, at least for a little while.

XX

LS

Ex- LTOU

… *sigh*

The last couple days, I look 4 months pregnant when I wake up.

At night, I appear to be 6 months pregnant.

Jesus. It hurts. Takes my breath away to have something hit my belly. Particularly, a beautiful -huge- puppy that loves to ram his snout into my body to get my attention. He is smart and learning not to do that but the couple of times he has nailed me is enough to make my vision fade to black for a sec.

I saw my PCP last week. I’ve got to better manage the anxiety I feel daily. It doesn’t matter if everything is right in my world or not, I feel like clawing my skin off to give the anxiety an exit! I’m on Xanax but it is more of a rescue than a viable management solution. We discussed the fact that I really need both, anti anxiety and antidepressant but in discussing my options, I’m left with SSRI’s as the antidepressant options. Fuck that. I cried. Of course.

*Sometimes I feel like a big cry baby. Thank god I’ve survived enough, lived enough to not care what others think.

With tears rolling down my face, that I just couldn’t stop, I ask Dr. D to help me understand the long term, physical effects of being on opiates like I was. I said that even though I was never considered an ‘addict’ in the traditional sense of the word, what if I should be physically treated as such?

He quickly corrected me… trying to tell me I wasn’t an addict.

I admit, We argued.

Dr. D said: You never used more meds than allotted… never called me for a refill before it was time.

Me: I never allowed myself to run out. Pffft! I even stockpiled that shit!

Dr. D: but you didn’t deplete your body for addiction. Your use was legit.

We settled on ‘EX Long Term Opiate user’. EX-LTOU for short. Hahahaha… poor Dr. D. Putting up with my ass for so long. I’m gonna sob when he retires.

So, I say, again, am I missing something we should be replacing since I was an EX-LTOU?

Dr D said the only studies are of addicts & their long term replacement needs are hormonal in nature. We both laughed- he said we know that’s not an option for you. They don’t have research on patients like you. He accentuated- most people who go on fentanyl don’t come off.

I say: Of course, I *wink*wink* wouldn’t have either if not for medical marijuana.

We end the visit with a new script for Buspar. It isn’t an SSRI and it’s anxiety only. He gave me permission to play with my dose, as he knows is a requirement for me when trying new meds, and he gave me the parameters I could play with.

I am reestablishing with my Tucson therapist this month. Maybe I can work through the anxiety with the help of buspar and counseling. Maybe some depression too. One can hope.

I see Hibner the 11th. Then I have to wait to schedule for the procedure(s) date. I find I’ve been trying to talk myself out of one procedure after another.

…I don’t need the bladder installation… then the bladder flips out and I feel like I need to pee 24/7.

I moved to thinking I didn’t need the Botox.

…Maybe, I can skip the Botox and then the procedure(s) won’t be so physically taxing… Then I remember the stabbing pains a couple weekends ago. And a couple that tip through there daily to remind me what pain really is.

…Maybe I can just do the SI joint Injections…

*ugh*

It really is all or nothing now. I have to do them all or I risk not getting the same relief as last time. It’s a risk I’m just not willing to take. I quietly resign myself for the physical whammy I’m about to absorb. My poor little body is tired.

Love and kindness, as my friend Callie says. Time for MORE self care and maybe a full ‘Netflix and chill, homemade pizza, ice cream and popcorn’ kinda weekend AT HOME is in order…

Xx

LS

That’s a wrap

And just like that, with the click of a button on social media, I am “un-friended”. Not typically a big deal, ever. If you don’t want to be in my life then exit. Hell, who am I kidding, I’ve helped kick a shit ton of people out of my life these last couple years. Family or friends, blood or not… GTFO if you mean me harm or wish me ill.

We all have friends that circle our lives, they fall in and out, depending on a need or want- on either side. That is how friendship usually works. If you’re blessed or lucky, you’ll find people that only want the best for you and help you survive ‘life’ along the way.

It is always sad to look back and see a friend has faded away and into the memories of your past. That is typically when a person just gently fades out of your life. Those are the ones where you tell funny stories and then say… what ever happened to so and so…? Every one has warm memories and full hearts with these memories because they warm your soul.

Then you have the ones where you get into an argument. Something maybe is said or done and it hurts. There is maybe a blow up or something said/done that isn’t forgivable. Those alway hurt. Maybe you learn a valuable life lesson or discover you just don’t jive. Maybe it was alcohol or drugs? Either way, you always know why that person exited your life.

But the worst… losing someone you weren’t ready to lose. Someone that just walks out. No explanation. No opportunity to understand why. No reasons given or explained. The kind of loss where you figure it out on your own that they left. Because they never say a word. Those… those fucking hurt. The friends where miles were traveled together. Lots of tears. A lot of trust, acceptance and love. The friend you believed would love you to the end because its been that way so long now, why would it be anything different? And… you would have loved them to the end. They were yours and you were theirs.

That loss… it is just too much.

It is with great sadness that I acknowledge my circle is tighter now. I’ll survive but this one… it’ll always sting.