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.

I’m ready for that new vagina, please.

Whoa. Today sucked. Pain wise, I had been bad lately, not horrible but bad enough to make me call Hibner for my next Botox, hydro, pudendal nerve and si joint Injections.

First, a couple weeks ago, my huge puppy rammed his snout into my left pelvic floor. It was so painful, I Instantly fell to my knees and cried. But half an hour before that, I just told my love that it was time for more Injections and I was going to call Hibner for his first availability. Then the dog takes me out.

It’s been a mildly stressful due to some money shifts to logistically cover some bills and stressful because I find myself at a job that I didn’t initially see was rewarding for me all while praying I can figure out how to build my independent consulting name and open my own company. Not gonna lie, tears and more tears were shed. Then add a pain level of 6 back on top and it was a recipe for stress.

I know my body responds to stress by shutting down and this was NO exception. My stomach responded by not asking for food. At all. Then if I forced food, it sat all day and required zofran to keep it there. 3 damn days I at lactose free yogurt and lactose free cheese and crackers. I can’t loose more weight… fortunately it was only 3 days this time. My overall Inflammation is high. My belly is swollen like I’m pregnant. My joints are painful and swollen. I have low back pain and my toes are cramping horribly… all that means about a 6 on my pain scale.

….

Then.

…..

Freaking Charlie horse hell. The left side of my pelvic floor was spasming and causing Charlie horse after Charlie horse cramp to rip through my whole vagina. I tried to find a pressure point to stop the spasms but I simply couldn’t reach the area. I cried. My pelvic floor continues to Charlie horses like that for most of the morning. Bad. I was instantly at a ten on the pain scale. I decided I better not bladder train during that time and push my bladder since my pelvic floor was locking up. Hubby and I were at a local favorite hole in the wall eating lunch and I said I was going to try and pee to see if my bladder was causing the Charlie horse issue… I go to the women’s bathroom and promptly discovered I could not relax enough of the muscles to let urine out without causing massive ripples of Charlie horses. I saw stars and then black… and almost passed out… in the local roach coach bathroom. Thank God I didn’t because that particular bathroom floor is not where I want to wake up at. It took a good few minutes to get it to stop long enough to pee but i managed to relax enough and I’m so thankful it did otherwise I believe I’d have ended up in ED for urine retention. Whoa, it took my breath away. This went on all morning, for hours. Then at about 1pm, just like a switch was flipped, it stopped. Abruptly. No rhyme or reason.

I’d like to say it stopped so everything is fine now. No. My body kicked up the pain receptors and their little feelers are all freaked out. Translation; now, I hurt all over. My toes are cramping in the left foot now, the sciatica on the left is pissed and now the whole clitoral area is hypersensitive. While none of this is the 10 on my pain scale from earlier, combined It’s a steady 6.

The good news, I’m scheduled to see Hibner on September 11. The bad news, I have to wait to see Hibner until the 11th and it’s only a follow up to justify to the Insurance that I need these things done. again. It’ll probably be 6 weeks after that to get on his injection schedule.

Until then, it’s calm and self care for this girl. Rest and scheduling and planning for the next 3 months. Otherwise, the pain will easily overtake me again.

And, I’m determined to not sink again.

For the first time in years, years- my house is spotless- SPOTLESS. Laundry is done and folded and put away (not couch surfing until it gets worn/washed again and ends up back on the sofa). All the bills are paid & current– at the same time. I’m not spending $1000 a month on prescription medications, copays and surgeries. There is a little bit of money in savings. The kid is wanting to find a hobby she can excel at and find college scholarships….

I guess what I’m saying is this: for the first time in years I am out of complete darkness and into shades of contrast and color and I’ll be damned if I don’t fight for every single color of beauty I can now see… because, I know I can achieve calm in my body and I’ll always seek to regain it since I know that it’s obtainable.

Pray I make it to the 11th and then that they have a quick schedule opening after that.

Until then, self care. ♥️

Love and prayers

xx

LS

My vagina doesn’t hurt

Let me say that again. My Vagina does not hurt.

It’s rare I can say that. It’s been calm for a couple months… close to 2 months and I was cautions about saying anything but here it is.

Why be cautious? Jesus. BUT-Why feel better now? That’s always the big question I want an answer to mostly so I can repeat it and find relief again… and I can honestly say I know my personal stress level plays a huge role in my overall pain experiences, but man. I didn’t realize how tightly it was tied.

My pain level and PGAD was calmer post blocks in January … but work. One day, a couple months ago, my boss pushed me too far and I quit my job. Abruptly. A job that I loved. That I was rocking out at and moving mountains to be successful at… but it just was not to be. No longer mine and a shitty situation forced me to leave a horrible job. The most toxic place I’ve ever worked at.

Normally a job loss, again, in a way that wasn’t what I would have chosen… didn’t cause an increase in any pain or anxiety levels for me. The job loss relieved so much stress. Instantly. And I had another decrease in pain and symptoms.

I have already secured another position. I hope its a spot I can heal in. Rest up and build my Independent consultant business while making a difference for my employer. It seems like a win/win! I start in a week so I had some time off. I wanted to rest but I honestly didn’t know how. I felt this deep need to clean out my disgusting house! And clean it is!

And- the best thing about my new position- it’s not a job that drug tests! I’m not starting out there as a liar already.

Medically I have decided to put treatment on hold. All treatments. I haven’t had any treatment since January. I don’t want to do the interstim yet. I want to see if I can regain some of the weight I lost. I want to see if the super fluid pelvic floor is helping the SI joint dislocation issues I’m currently dealing with and if Botox is helping all those issues along and making them worse…. but basically, I’m tired of being poked. I needed a break from it all especially the mental break. I will go back when my pain days surpass my pain free days. Or sooner. Depends on the pain.

I know now that I needed this break. Mentally. Emotionally and physically. I needed to do everything I’ve done and now it’s time to rebuild. I’m trying to live in the moment. Not stress over tomorrow’s pain status. Acknowledge any anxiety and deal with it and finally, just… be. I’m enjoying the quiet my body has gifted me with. The sun and the desert with my love.

*Thank you to my love- the gift of time off was all you. Thank you for everything but most of all, your support.

I’ll update again soon. Until then, I’m off to enjoy the calm of a 2 on the pain scale. Who knows what the Universe holds tomorrow but today, she has brought me a calmness I desperately needed. And the opportunity to use it and enjoy it.

Xx

LS

To my love, Happy Anniversary.

Happy anniversary to my beautiful husband.

This road of ours… man, I’m looking back and I see that we’ve walked a least a million miles together. We’ve walked some miles alone- side by side, held each other up through some and carried each other through the rest. We’ve cried huge 5 gallon buckets of tears and bottled all the laughter we could catch.

And for what???

I’ll tell you.

.

.

.

.

19 years married. Over 25 years together.

Holy wow. I instantly think to myself, how did I get so lucky?! 19 years of marriage on the books, to the love of my youth, the love of my now. The man that has been my rock for every one of those 19 years. Doesn’t matter if I was leaning on it, banging my head against it or hiding behind it. You are my rock. Always have been. Always will be. I’ve told you before and I’ll tell you again, I still chose you.

But all these years together was not luck. Our 19 year history was spent fighting for every minute together. Defying family and ditching friends to just be together. I’ve followed you from Dakota to Louisiana and a couple other places around and in between. Our journey has carried us through so many challenges and I must say, I’ll forever envy the freedom ‘normal, non-sick’ couples have because they’ll never know how blessed they truly are.

Being married to a chronically ill person changes things. For instance, I know that most men haven’t had to take their sick wife all over the Southwest to find medical treatments but you did that for me. All in search of pain relief for me. You were always the one in my corner. Despite the years of searching, you never believed the doctors… Despite one Gastrointestinal doc telling you I was crazy, while I was still drugged up after a procedure. When I couldn’t fight the doctors, you did it for me. The surgeon from Mayo that dismissed me, you reminded her she failed me. Time and time again, you cleaned up after I threw up food for no reason. Found nausea medicine and pain pills for me. Helped put me to bed and promised it would be better in the morning.

None of that even touches the hours and hours spent in hospitals! Holy shit… hours and hours and hours and hours! From check in lobby’s to pre-op check in areas then over to surgical waiting rooms… and finally overnight with me in my room. So many hours in the hospital and not one single time has it been for you! All this time you’ve logged at hospitals and not one single second was for you.

Seriously, I could go on and on but…

It’s been a hell of a ride. I’m so honored to be your wife and I can’t wait to spend every second of the rest of my life with you.

Happy Anniversary my Love.

My song for you. When I Die by Quinn XCII

Xo

LS

Hello Pain

And just like a flip of the switch, my low back pain is a 7 out of 10 and climbing. I have a mini-migraine as is typical with a high pain level. I’m nauseous and ready for a hot shower, heating pad and bed. Maybe a Percocet in there… not sure yet where this pain will lead me now that it is here. While I despise Percocet and opiates, there is a time and a place and last time the pain was super bad, I knocked it out with Percocet, sleep and heat and battled the pain demon away for another time.

~~I wrote that last night, 7pm… I didn’t take a Percocet, i just went to bed. ~~

Today, I feel the weight of pain. It’s a dull 6 at wake up, what will a full day of work do to it… A Heaviness in my hips. A wrap of pain that hugs my hips like a huge rubber band. It tightens with every move. The pain flows through the inside of the hip bone and down the inside on my groin and finally radiating Down to nothing my by knee. Both fucking sides!

Anxiety like a mofo. It’s super hard to breathe with the weight of this internal anxiety. I honestly know why people self harm to release. If I could cut the top, it’ll relieve the pressure inside. Unfortunately, logically, I know that won’t solve anything for me. It’ll just leave me with cuts and shredded skin. And I’ll still be full of anxiety. Anxiety over work. Anxiety over medical. Anxiety over health. Anxiety for my family- living with me can’t be cool. Anxiety is my vibe. I hate it.

I can’t stop crying today. Been crying since I got up. I’ve had half a pot of coffee and it’s just not enough to shake the heaviness I feel. Mostly because I feel a sadness that Every day I wake up I actually ask myself if I’m okay living this way another day. Luckily, every day, the answer has been yes- mostly because I believe I am stronger than this pain. I know I’m meaner… thanks to my momma. So, Today, I can do it again. When the day comes, and that my answer to that question changes then I’ll reach out and let my family help me through it. I had a beautiful person tell me to hold onto the small joys and keep them in the front of my mind, especially when it gets rough. I promise I’m trying.

I did call Jaffee’s surgery scheduler. Explained that I needed more info. Where are the leads placed? Does he even think the procedure will work for me? She left a message for doctor to call me. Dr Jaffee called me back. Poor guy. I almost feel bad he has to deal with me and the after effects of years of dumbass doctors mis-treating me and dismissing me but what ever, nothing I can do about that now.

Anyways, Jaffee calls and said he does think the procedure will help me. He consulted multiple other specialists and while there are two placements available for the leads:

1. S3, anchored to bone

2. Direct Pudendal nerve placement

He states that he will only offer me one type, S3 with anchoring. He said placing the leads in the direct pudendal nerve wasn’t a viable option for me because of lead migration. The leads can’t be anchored in direct pudendal placement and with my hyper Mobil pelvic floor, he won’t even try it. I asked his opinion on waiting as long as I could pain wise, to do the procedure and he said there wasn’t a need to wait since I have pain all the time.

When I’m ready to schedule, she said it’s a week, two week lead time to get me in to do the trial. Holy crap. That means if I chose to do this, I’ll be in surgery for more pokes soon.

Time to analyze all my info. When I make my final decision, I’ll update the blog.

Prayers please.

Xx

LS