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

Next step in process

I did it. I called Hibner and got more info. He doesn’t do the interstim and I wanted to cry. I knew it would be too good to be true if Hibner did them too! That means, I have to leave my comfort zone and go see a urologist Hibner recommends. Hibner immediately spit out the name: Dr. Daniel Jaffee at Affiliated Urology in Phoenix.

I was assured by Betty, Hibner’s triage nurse that Dr. Hibner immediately said great idea and send her to Dr. Jaffee. She reassured me that Jaffee has experience with more than just urological interstims… like- PGAD???!! Pudendal neuralgia interstims too… yes!

I didn’t stop there, as is typical for me. I actually called Jaffee’s office and asked for a consult to discuss interstims. I stressed it is not for my interstitial cystitis. I want PGAD and pudendal neuralgia interstim consult. The amazing receptionist was not only knowledgeable but confident Jaffee could help me. She is familiar with the complicated cases Hibner sends Jaffee and is getting records faxed over for me. Jaffee’s receptionist goes a step farther and makes a sweep thru his schedule and can get me in in this month. By the end of April, I should know if I will begin my interstim journey with Jaffee or make a move to visit one of the other potential surgeons for this procedure.

I’ll post more after my consult!

Xx

Lilly

Make me. Please?!

A couple nights ago, I had been crying for a couple hours. I was angry because it was bullshit and it made me mad that I just couldn’t stop crying. Here I am, a week later and I can’t stop crying. Again. The pattern is always the same. just varying times of the day.

Work is ridiculous… there are zero words to explain the stress level I endure daily. I’m cool with the job, love it actually. Hate the toxic leadership. I despise that I feel less able to do my job and be successful because of the toxic environment. I can’t find any happy balance at work.

I know my previous work experiences are clouding my judgement at the current work and it makes me sad. Driving to work requires anxiety pills and a rubber band on my wrist to stop the panic… it’s miserable because only half of that is even from this job. The rest of that is a stress that today is the day I’ll lose this job and my medical marijuana card can’t protect me. It didn’t the last time and it won’t again. Nothing can protect me from losing my job again for managing my pain, opiate free.

Update on physical and medical… I am at a good 2-3 pain level with rare spikes to a 7. I think I can live with this pain level for a while. Mentally, I can’t bear to schedule another Botox /bladder hydrodistension appointment. I just can’t do it. I am due soon and haven’t even scheduled yet. My soul is tired of being poked. I’m actually going to try and delay the injections until I can’t anymore. I just don’t want to do it again. It makes me nauseous and my body hurts at the thought of all that. Again. Another Epidural- this time, I hope it’s just one poke. More Anesthesia- wake up hours later. Can’t feel anything below my waist. Can’t walk. Another Catheter and peeing blood for hours or days. I just can’t stomach the thought. For now, the pain isn’t unbearable and I’m managing to keep it at a 5-6 or lower.

I feel like I’m a shell trying to put the pieces together to make a whole person again. But these pieces don’t look like they used to. They’re different- all different. The colors aren’t the same. The size or shape is nothing it should be. It’s all different. A kaleidoscope of oddities that make zero sense. Where once stood a smart, confident person is now a skeptical, anxious person. It’s hard to reconcile the differences. I know that person is gone and I’m okay with a lot of her dying but I am not okay feeling so unstable in the aftermath. I feel like it takes me twice as long to make a decision or to defend myself when I used to take care of the problem immediately. Maybe if I’d just had one thing go wrong and not all of them… maybe if I’d just lost my job and not my reputation, relationships and the thin grip on my health… maybe one but not all of them at the same time.

The anxiety I feel daily makes me want to shred my skin to release the pressure my whole body feels. Constant. It never ends. My body has turned on me and I can’t make it return to normal state. No matter what procedures or surgeries I endure or how much I try to feel okay, it’s never going to be okay. I’ll never not be sick.

I keep trying to reconcile in my head, how does one agree to live like this? And then do it with a happy heart? It would be awesome if someone could make it all be okay! Make me be okay! I’m in counseling and it’s hard to make myself continue to go. Not because I don’t like her or she’s doesn’t know what she’s talking about… but because She can’t make me okay. She can’t make me healthy. She can’t make the medical procedures stop. She can’t erase the past mistakes and trust I placed in the wrong hands. She can’t change the fact that I can’t live with out some sort of pain medication/pain relief options. She can’t make me okay.

I did make a follow up with Hibner for sometime end of June. That’s his first available appointment. I took that appointment. It was a weak effort, I know. I should call him and see if I can get a message to him and see about interstim and if he can even do them… but that requires a ready-‘ness’ on my part to go to Phoenix and ask for more time off work… and I don’t have it to give. So I’ll chill until the pain drives me back to see him.

Until then. I’ll keep trying to survive this mess. Lots to do today and no time to fix makeup… done with the cry pretty shit for the day. Anxiety pill in and off to work I go.

Anyone got any advise on how to accept this medical nightmare that is my life? Maybe a ‘make me’ wand?

Xx

LS

More weight loss. Post procedure update.

I am the lowest I’ve weighed in my adult life. Most people would be thrilled but I’ve mostly always been small. Size 2-4 when I got pregnant. After a crazy hard pregnancy, I gained weight and hovered/fluctuated around a size 8-10-12. I was happy with my curves and would have loved to be a good size 6 again. So, Being the smallest I’ve ever been means I weigh 100lbs. I just recently saw 110 but then got sick with some stomach thing and now I’m at 100lbs. I assure you the 110lbs now didn’t look like 110lbs looked 20 years ago.

I’m devastated. I look like a Skelton. Like a person who has suffered years of anorexia or bulimia. I am doing all I can to stop the losses but it just keeps rolling off. My daughter saw me get into the shower the other day and she gasped. I assured her it was okay but she had tears in her eyes.

I had to buy new bras today. I had been crying all damn morning about it. I just gave in and took a Xanax so I could finally get this done! Last time I was measured, they told me they don’t carry bras in my size if I go down again, chest size. So, that means I am smaller than a size 0 model. Where does one buy bras that small? It’s given me massive anxiety and I made a comment to a coworker that I’d needed to do this… she said stop complaining because she has to now buy clothes at Lane Bryant and I said, who cares! I’ll be buying clothes at Justice! We both teared up. Laughed and hugged.

~~~~~~~

Procedure update. I still feel good and that makes me feel a little like I’m crazy. It is absolutely astonishing to me the amount of pain my body can endure and my mind will dismiss as ‘not that bad’ when it is actually calm. And damn it. That’s makes me think I’m crazy! My saving grace today, the blog. I love this blog and how it’s reminding me that my brain can play all the tricks it wants, but when it’s written by me during horrible times, I have my own personal reminder of what it’s really like when it is bad.

The PGAD- a calm 0-2 most times and only flares to a max 5. That’s from a constant ten, pre procedure. For that, I’m always grateful.

Pelvic floor- still have Charlie horses rip through there and some days are bad but most are good!

SI joints- still dislocating but since I can pop them back into place, I refuse any additional treatment. Their idea of treatment seems like mid evil torture! Fusing both of the SI joints was recently recommended as a viable treatment.

I still need to call Hibner and get a follow up. And my next procedure scheduled. 😔 I now dread the complete exhaustion the anesthesia will cause. The pain of the epidural (I’m still trying to get my spine to stop hurting from the last procedure). I’ll see if I can stomach the thought of getting another procedure on the books for April/May.

Still searching Dr. Google for any auto immune clues.

I’m waiting and watching as another PGAD sufferer gets her interstim trial for the treatment of PGAD. I hope, pray and beg the powers that be for her treatment to be successful. ♥️ she deserves calm!

Xx

Lilly

Time for change.

I am a month past my last procedure. I always hate to post these, ‘I feel good’ updates because it usually fucks me and I end up in pain the next day… like Murphy’s law kicks in and surprise!!! The pain reappears and says- I’m back.

The IC is calm. No crazy spasms or urgency. The pelvic floor is calm 96% of the time. Experiencing A Charlie horse in a muscle you can’t reach really bites! The SI joints, while still hyper-mobil are relaxed enough to where I can at least pop them back into place on my own when they shift out. It feels good to be able to relieve my own pain. I’m at a two. Pain managed with half the MMJ I’ve been needing, and I am still opiate free.

The plan for next? As presented to me by Hastings from MRI results. Two phase recommendation: I was supposed to make a pain management appointment and discuss injections into the SI ligaments to ‘scar tissue them up’. That will supposedly help with the hyper mobility issue. Then, I was supposed to go see Hibner about the super vascular area that needs his attention. Almost a pelvic congestion syndrome needing coils vascularly inserted in the pelvic cavity. My thoughts? No thank you. To both recommendations.

I will be perfectly honest, I didn’t do very much research on either procedures because If I allow ligament injections, my husband and I both know, I’ll end up in a wheelchair in ten years. If I allow any type of vascular surgery in my pelvic area, it can never be undone… never return to pre-surgical state and it’s all a crapshoot and I’m so sick of being a medical guinea pig. I’m sick of treating one thing and creating more problems. I’ve said it over and over, my body has proven it doesn’t do what you expect and then stop, hell no. This body goes so far to the extreme it requires procedures on top of more procedures and still more to fix the damage and fuck ups of prior surgeries and procedures, dismissals and ignorance from the medical community.

I am going to make a follow up with Hibner. I want to discuss this AMAZING vast reduction in pain and overall symptoms, with all the right blocks in and active together. I need to understand where he placed the two, bilateral pudendal nerve blocks. And see if it’s possible to start looking into the implantable nerve stimulator devices. Or interstims, as I refer to them as.

I don’t want to do quarterly procedures.

I don’t want anesthesia and epidurals anymore.

I can’t even begin to describe the spine pain I constantly feel in one general area… epidurals hurt. Especially botched epidurals. I wonder, is that area healed before they’re punching another huge needle through my spine three months later?… If I’m lucky, and I mean IF- the anesthesiologists gets me on one poke. I’ve come out of there with 9 visible, ‘attempts’ to get a spinal placed for one procedure. The last anesthesiologists said because I’m so super skinny, it’s actually harder to get an epidural placed. Who knew…

I just can’t do it anymore. I sound so ungrateful and believe me, I’m not. I’m just very battle worn. Body and mind.

I feel like the vulvodynia, PGAD, pelvic floor dysfunction are all nerve related secondary to muscular. I’ve had the two conditions my entire life. As long as I can remember, I have had pain and remember hypersensitivity including orgasms in kindergarten but didn’t have a clue what they were. I didn’t have very many of them. I remember oddities like that for as long as I can remember… always pain. Always hypersensitive.

So, it’s time for a long term alternative. I need to know what being hyper Mobil will do to leads being placed, can one device implant in two separate areas of the pudendal nerve, bilaterally? Can one device control 4 leads?

I have a lot to learn and a lot of support from fellow pgad badasses that have already gone before me! They Blazed this trail… and lit it up so I could see the option is there.

I’ll update soon. Once I have a Hibner appointment scheduled or the blocks wear off… Let’s see how long the blocks work. I’m a month in. They last 6-8weeks. Eek

Xo

LS