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

And just like that…

It’s a go.

I got a call from Jaffee’s office. A call I quickly declined and sent to voicemail. I haven’t had the mental bandwidth to answer that voice mail, still figuring it was for info only… until today. So I dial in and listen.

.~. They were calling to get me SCHEDULED for my procedure. Holy shit. .~.

They called on Wednesday or Thursday of last week but it’s been a hell week at work. … I know, what week isn’t hell week … for me… However, when the call came through I was in training and it almost made me have a panic attack so I quickly pushed it out of my mind and decided I’d come back to it later. Plus, I figured they just wanted a shit ton more information and I had zero time to answer anything.

Anyone that knows me knows these things… I despise phone Calls. Nothing good comes from a phone call… ever. Day or night. It’s always: Someone has died, you owe money or someone’s looking for someone I don’t know. And RoboCalls! Aye!!! Anyways, phone calls panics me and I rarely answer a call if I don’t recognize the number and even numbers I recognize, are difficult for me to answer. Full body panic upon my phone ringing. I often times just let my voice mail fill up and leave it there. Then, you’re forced to text me if you’re close enough to get to me. Another way I’m jacked in the head… a scaredy-cat cat over a damn phone call.

I finally listened to that VM today. Holy shit! How in the hell did he get the trial approved so fast!? Shit. My research isn’t even done. I’m not prepared for a yes. Guess I’ll call her Monday and get the lead placement details I’ve been putting off. Then see how far we can go out in scheduling. Then get my ass in gear on my research.

I’m already experiencing pelvic floor Charlie horses. And a collision with the dog ensuring a mild right SI joint injury. The pain is starting to intensify now. But, I want to be in a lot of pain before I do this trial and the pain I’m in right now is a 2-3 of what I can handle… that’s fucking chump change to me in the pain world, a 2-3, I’m used to experiencing.

I am now 4 months post injection/procedure.

More details as I round them up. Just can’t believe it’s time to schedule.

Xx

LS

Interstim

The appointment with Dr. Jaffee didn’t go according to plan. But I’m not sure why I thought it would be okay… Or why I thought it would go anything like what I wanted it to. Pffffft… how arrogant of me.

Remember when I asked Hibner to send me for PGAD, not the bladder? And I was assured, this is the place to go! I explained I didn’t want to see a urologist for bladder pains, just pelvic pain. And again, Betty, Hibner’s triage nurse assured me that Jaffee was where I should be. Hibner said so! Ok, now, remember when I called and made an appointment with Jaffee and asked that this be for PGAD? Made sure they knew it wasn’t bladder related… they promised it would be okay…

I am sad to say, none of the above was true. I freaked out and I almost bolted out of the exam room.

Jaffee never touched me. Never examined me and, He had never even heard of PGAD.

My whole body froze. Dead. Froze. Then I panicked. I couldn’t breathe. I couldn’t focus. I couldn’t stop the tears. I jumped to bolt….

And my brother stopped me. (((Ha! And to think, I had tried to talk him out of meeting me… nah, I said, I didn’t need him, it was just a consult to get some info… Hibner says he is good.)))

I don’t remember what all I said as I tried to bolt but my brother somehow made eye contact with me and got me to sit still. Here is the condensed version-

dr comes in. What can I do for you? I say, discuss interstim for PGAD. Dr smiles and says, what’s that again? I say, PGAD. Dr- *blink*blink* well, not sure what ‘that’ is but there are three reasons insurance will pay for an interstim. He recites them. I say ok but the bladder is a nuisance and not my concern. I can dismiss it. I have my whole life. I say, I’m here for PGAD and what experience you have with the interstim helping with pudendal neuralgia , pelvic floor dysfunction and PGAD. Dr says, again, insurance will only cover it for these reasons…. (I can’t even remember what the reasons were now). I say, again, I don’t care about the bladder. Hibner said you could help me. If you don’t even know what PGAD is then there isn’t a reason for me to be here. I made a mistake. You can’t help me. I’m out… I stand to bolt and brother says: Hang on… dr, I’d like to speak for my sister. I’ve watched her fight this pain her whole life and my other Sister and Its at a point that she is not well and we are worried. This is bad. She is withering to nothing. All through out childhood, Our mom told her to suck it up and dismissed her and then as an adult when she sought medical care, she was dismissed again. Doctors and anxiety are her reality. But… he turns to me and says- sister. Listen to me. He said he has to code it for bladder pain… code it. Not that it won’t help. Remember, how it’s coded doesn’t mean anything. What if it helps some of the pain? What if it takes care of some pain. It’s okay… let’s finish this.

I calmed down enough to discuss the pain I’ve lived with my whole life and the effects on me. Dr. Jaffee asked about the bladder pain, urgency and frequency. I then felt like I had to shift the whole appointment to the bladder and discuss only bladder. Of course, living with interstitial cystitis means that shift isn’t a problem for me because of the daily bladder struggle I’ve known since childhood. As i talk to Jaffee, I exaggerate how the bladder bothers me. *{It’s important to code it correctly, after all}* In reality my bladder has bothered me since I can remember… no memory is without bladder issues. I also discussed with him the need to be out of all current blocks and ‘in pain’ before doing the procedure so I’ll have to throw myself into a huge pain flare. *~makes me sick to think of it*!

Jaffee did make it a point to tell me there was no one in AZ, maybe even the west coast that’s done more interstims and if interstim is what I want, he’s the best for that procedure. It wasn’t an arrogant statement. More of a factual statement for him.

The next day, I picked up the Information he sent home with me and it’s complete bullshit. It’s a introductory Booklet on the machine and how it can ‘help’ with bladder pain, urgency and frequency. What the fuck! That means I have to call his office to get the info I am looking for or do a mass online search. Grrrrrrrrr Where is the meat to the procedure? Where are the leads places? What are they made of? Does approach to placement of leads change outcome?

Dr. Jaffee was nice and very professional. He didn’t dismiss me after I almost bolted… even after my panic attack! [{[and luckily he didn’t make the dumb ass comments about PGAD and it being a ‘good thing’ to have… He also didn’t make the mistake of saying it doesn’t exist]}] Despite all that, Jaffee failed to give me the one thing I was desperate for. He failed to reassure me that he believed the interstim would help what I wanted it to help. Or would help anything but the bladder. Hell, even help the bladder at all! I don’t know why I believed he’d have any experience with PGAD… maybe because Hibner sent me? The fact that he avoided it and wouldn’t even have a convo about me, about my pain, my life, my goals, my personal expectations and wishes with this procedure was, in my opinion, just an epic failure on his part.

I left feeling angry. Disappointed. Embarrassed. Heart broken.

The thought of coming home, facing my family with the emptiness of what felt like another failed doctors appointment had me crying the entire drive home. Feeling empty handed and loosing hope of an interstim helping me… the ‘loss’ of another potential procedure puts me WHERE exactly? Besides fucked? Made me face the reality of my situation even harder. I’m almost at the end of ALL possible treatment for what is MY pain. What a horrible thought. It steals my breath to think I’ve almost exhausted all of my resources.

When I got home, I was very raw. Trying not to cry. Pretending it was okay. My poor husband said something about- what now? Well…

Before I make the decision on doing this procedure vs the DRG (dorsal root ganglion), I need to now know the difference between and interstim and a DRG. The placement of both to compare the two, why/how they are different… but, It takes energy to examine these and I’m fresh out lately. I hope one of my PGAD ladies will pitch in an opinion…

While you debate on the answer to that question — these thoughts keep crossing my mind since the appointment: some pros on why I’d think of doing it: I have zero clue on where the *most pain is actually coming from. This could decrease the pain by 10% or 50%… I don’t know. Being a hot ass pelvic disaster kinda means my pain is just layers of this pain on top of that pain. While I think of the bladder as a bother and not important… Maybe it’s more and I don’t know it? What if I can do it and see if the interstim helps my overall pelvic pain and PGAD symptoms? What if I can help the other 300 people in the PGAD support groups I’m part of? It’s a trial. If it doesn’t work, worse case scenario? Remove the trial? Please weigh in…

I’m currently 3 months and three weeks out from my last Botox. I have zero idea how long I can go before I can’t stand the pain anymore? Pray I withstand the pain storm coming.

I’ll update with more information once I get all the pieces together.

Xx

LS