SIJ injection day.

The SIJ injection appointment went off like I expected! Completely successful!

But, Dr. Gossler is a pro. The injections were easy. But I’ve only ever done them under anesthesia so I did take two Xanax for the appointment. One 2 hours prior and the second Xanax one hour prior to the scheduled Injection time. I was anxious and knew not to tempt the PTSD and I wanted to be relaxed during the procedure. So, I took 2 Xanax to cover my bases. Also, the wonderful husband drove me so I didn’t have to do anything but have my injections.

The Injections were not pain free but they certainly were not a deal breaker. I lay on my stomach, all propped up and comfortable and talk to the assistant the whole time she set up the injection tray. Doctor comes in, we chat and then Dr. Gossler reminds me these injections eventually stop working for people and then he said how LUCKY I am they work for me.

…WTF…. ** …luck? Who.The.Fuck said lucky and my name in the same sentence???… cause they’ll need a good ‘momma smack up the back of their head’ and it needs to be hard!! Fucking luck didn’t land me here, today. Sheer will and determination to live, that’s why I’m here.

But… remember. I was prepared and had a good amount of Xanax on board. I calmly remind him… he only gets to do TWO of my over all injections so I don’t consider myself lucky in any realm. But, until the day the SIJ injections don’t work, just do your part and shoot me up! I then took the opportunity to remind him to look for other pelvic diseases when his SI Joint injections fail for other patients. Since my pelvic diseases are all related. And CONNECTED!

Dr. Gossler quickly agrees that I am a complicated case. He started the procedure… He was quick and the worst part was the actual steroid injection as it fills the space completely. Dr. Gossler said I’d feel pressure and man, did I ever! Wow. But then it was over.

By the 8th hour after the injection, my pain went from a steady 7-8 to a 2. Thank God I didn’t Rambo this one and try and drive myself, although it’s harder to trick this system than the hospitals. LOL… anyways, my right leg was not cooperative after the injections and it took a couple hours to regain enough control to be able to walk on my own.

Here is what the injection sites looked like:

Overall, would I do it again? Hell yes. If you’re on the fence about doing the shots, don’t be. Do them. The pain you suffer daily is less pain than these injections… and if it works for you then you’re one step closer to finding the key to unlock your pain puzzle. If they don’t work, don’t give up on them, add other injections on, it may only be a percentage of the pain and not the total cause!

Today, I am 6 days out from the shots. Overall, pain is decreased systemically. Relieving the SIJ pain released the knotted neck and mid back muscles. They also released the butt and hip pain and the sciatica. Having that pain relieved allowed me to relax enough to calm the pelvic floor. I haven’t had a Charlie horse since Monday.

Fuck yeah! Success… however long it may be. I’ll take it. I do believe I’ll go ahead and schedule a procedure for ALL of the injections again in about 3 months. Go visit the amazing Hibner then the next week, SIJ’s again. Then, I hope to get a year between injections. A WHOLE year! A WHOLE YEAR! Wow… to dream. I’m dreaming of the day.

Xx

LS

Silence that marquee

I woke up with it on my mind and then immediately I felt the heaviness in my heart. The anxiety instantly set in… my vision fuzzy. Tears in my eyes

My first thought of the morning. UGH

I can’t stop it…

Scrolling through my mind like a marquee… you know the one. The sign that is out of place and too bright and has that really loud, odd buzz…

…new doctor… new doctor… new doctor…

I know it’s a fear response. A history of being doubted. But I’m powerless to stop it. I haven’t even seen the doctor and I’m already in panic.

The auditory marquee immediately rolls into visual images of these previous doctors. Like ghosts of my past, they roll together fluidly from one doubtful doctor to the next. Each one here to haunt me all over again. They’re all arrogantly standing over me…. taking turns calling me a liar. Telling me to seek psychiatric care for a pain that was ‘Obviously’ in my head.

The marquee keeps scrolling… it’s amps up in intensity. I can hear the labels they tacked onto me. Like they’re playing pin the tail on the donkey at a kids birthday party…

…she’s a hypochondriac, she’s a drug seeker, only drug addicts use fentanyl, have you thought you are your own problem…

The marquee rolling through my mind and the subsequent panic and anxiety level would normally have been enough to make me cancel the appointment. Why cancel? Because, Fuck it… I still have more pain managed days than non-managed days so there is no need to deal with hypocritical… NEW DOCTORS…. right this minute.

But.

That isn’t healing. Cancelling the appointment isn’t what will help me get this pain back under control.

Luckily, the husband stirred about 20 minutes into my anxiety filled, marquee rolling, panic attack.

He acknowledged that he could see why I was struggling. But was quick to then remind me that we don’t need this guy for answers. We don’t need diagnostic stuff, just maintenance and access to care. -And, husband says, if he’s a dick, just leave. We will find someone else.

So, how did it go?

Well, I got up and took a Xanax. Lol

Then I got dressed. Curled my hair and put my makeup on. Shoes, perfume and Jewelry. ~~It’s necessary for me, you see. It’s a survival tool, really. I learned early on… If I’m put together, not hysterical or wild eyed, their more likely to believe me…

I drove to the doctor and almost bailed in the parking lot but the husband was there to text with me… we don’t need him to believe you, only agree to the injections. It’s okay… you’re okay….

So I went in. Alone. Believing in the power of my own story. And my own survival…. but still, hoping I like him.

Dr. Gossler comes in. Shakes my hand and we do brief intro’s. He asks why I’m there and I immediately explain that I have PTSD that is trigged X1000 when I see new doctors, please if he could be patient with me while I process what is said and if I ask you to repeat yourself, it’s only to ensure I understand what you mean.

…fuck…

…….FUCK.

I didn’t mean to say that! Ugh!

Dr. Gossler looks at me and calmly says, okay. Thank you.

…Then he starts… I read your last records from Hibner. He asks, Who was Dr. Hastings again?….. and off we went, answering questions and then his exam. We discuss how I added procedure onto procedure until I found the powerhouse COMBINATION to deal with PGAD and bladder, frozen pelvic muscles and SIJ injections… Dr. Gossler said he doesn’t want any radiology tests. He is comfortable continuing Hastings injections…

He asked if I had another diagnosis of some hip thing. I said no…I must have looked wild eyed, he backed off. I didn’t ask what he meant as I was so focused on making sure I controlled my ptsd. I’ll have to ask what he thinks is happening to the hips at my next visit.

Then he surprised me. He offered additional treatments to consider when the SIJ Injections stop working… radioablation of the nerves (that can last up to a year at a time) and then fusing the joints. I immediately rejected fusing and he asked why. I said I was afraid of it causing more damage down the road. He said unlikely and explained the dowels they use are triangular and don’t go through the whole pelvic floor. It isn’t one single rod but 4 small ones. He said it’s an option for later, not now. He told me I am lucky, that only 30% of people who get SIJ injections get any relief.

Now that I think about it, I don’t think it’s luck at all… Blood. Sweat. Tears. Withdrawals. And I can’t help but think maybe if the doctors did more powerhouse injections, listening and adjusting based on each patients needs, together then more people would report successful blocks…. if I had done one block at a time and moved on to the next after it didn’t help ‘enough’ then I’d be saying none of them work… it honestly took them ALL, being done together, to get any significant pain difference for me.

Anyways, I did it. A successful visit. By myself. Hahahahaha haha…. unsupervised. To a new doctor! Hells yeah!

And, I see Dr. Gossler again on February 17th for bilateral SIJ injections. In clinic, no anesthesia and I can’t fucking wait! Bring on the pain of those injections so I know I have relief coming… bring it!

Come on Feb 17!

Healing is hard but the reward is beautiful.

Updates after the injections.

Xx

LS

Unexpected chapter

I am trying to keep a peace about my world. A world where stress and anxiety simply don’t have a place to thrive. While also trying to detox off Xanax and muscle relaxers. While the muscle relaxers are easy to not take… my Xanax is a different thing all together. I may never be off it.

I’m trying to learn new tools to deal with the anxiety so now, when anxiety strikes, I ask myself if it is justified. If so, is there something I can do immediately to relieve the anxiety? Sometimes it’s something small like, log in and pay a bill. If those things don’t work to relieve anxiety then, can I get my husband on the phone to talk and work through the anxiety? Is it work related? Can my business partner help me? What can I do to relieve anxiety before it builds?

Overall, now that I work for myself. My anxiety is typically a low 3. But it is still a buzz of energy that just can’t be snuffed out. When it peaks, my vision fades and my heart races and I know I am close to a panic attack. Luckily, I haven’t had a panic attack like that in a long time.

It’s been over 6 months since I left a position that I should have left a long time ago. While it has helped me immensely to have a different job, it hasn’t removed all stresses. I still have deadlines. I still work with awful people. Only now, I’m the consultant. It is very rewarding to build your own legacy but it isn’t with out anxiety.

While I had hoped being at home would help me gain weight, it hasn’t helped much. I had hoped to be 15lbs heavier by now. Ha! While I have gained a touch back it is not enough to need new clothes. All my double zero’s still fit like a glove. Guess I should be happy the weight losses seem to have stopped (although, I’m not sure what the fuck is less than a double zero???… seems like I’ve already lost all there was to possibly lose).

Since my last procedure was incomplete (Hastings didn’t show up to my injection appointment since Hibner ran late and didn’t start me until 530pm) and I got everything but the SIJ injections, it showed me that those joints alone compromise about 40-50% of my total pain now. I feel like knowing this will allow me to stretch the next Botox appointment a year!! Because, duh. My logical thought… if I can increase the SIJ injections and control the start of the pain, then maybe, just maybe, by keeping those little bastards in check, it will allow for my body to need less Botox! So. I have started the daunting task of looking for a new, local, pain management doctor to manage my SIJ needs. If I want to have better, faster and more improved access to the SI Joint Injections, it’s time to look locally.

For a new doctor.

…Fuck…

A new doctor.

…<<<<Insert PTSD reaction now>>>>…

…Fuck….

New doctor…

Breathe in. Breathe out. I can do this.

I need to do this.

I call a clinic (that I’ve not fired before -haha-) and ask a ton of questions. Poor gal that had the misfortune of answering the phone… patiently answered my questions about the clinic. I mean everything: the providers, their skill set of doing SIJ Injections (they all do them), do they have a unit in clinic to do the injections or must it be done in the hospital (clinic procedures)…. and then finally- the biggest question of all- their medical marijuana policy (they allow it- with active Medical Card only). So far, so good.

Of course, she asks for the history to know *where to put me and with what doctor. I explain my high level issues and why I know exactly what needs to be done. ~I’m not your typical case… I exhausted Mayo Clinic. Landed with Hibner. Over the last 4 years we’ve added injection on top of injection on top of injection on top of bladder hydro and 300 units of pelvic floor Botox until his partner, Hastings, diagnosed me with SI Joint dysfunction. Hastings did the first SIJ injections in conjunction with everything else Hibner does and I was pain managed for the first time in forever. I don’t want pills. I only want the Injections Hastings did.

She wanted to talk to a provider and look at their schedule and see what could be done. She said she’ll call me back…Sure but I figured I’d have to chase her down. Nope. She called today. I have an appointment for SIJ Injection consult the 7th and I hope to follow that with the soonest Injection slot they can give me.

Wish me luck! Anxiety and PTSD flare around new doctors. The thought of explaining my medical life. My journey and pain… sprinkled with PGAD always makes me cry. I somehow live those pains again.

However, this time, I finally have a new , unexpected chapter to add…

How I survived it all. ♥️

Xx

LS

The best gift of 2019

It’s that time of year.

Haha- nope, not Christmas. No- this is even better!

Tis’ the very END of the holiday season!!

Hahahahaha hahahahaha!

Thank you baby Jesus! And everything Holy.

Fuck.

Seems awful to say but the year end holiday hustle is not the most joyous time of the year. Most people experience a lot of stress this time of year… Financial, relationship, family….

For me, holidays usually mean a whole new level of anxiety. One where Xanax is required to survive. However, the holidays this year came with the development of something new. Something that should have been put into place years ago but never was. Something that gives power back to me, not removes it.

This year, I was given the gift of setting boundaries. Boundaries that my husband helped set, and then helped me hold onto, despite pressure to ‘just get over it’…

It’s most unfortunate that these boundaries were absolutely necessary to protect me from people that aren’t on my team. These people quit cheering for me a long time ago, despite me cheering for them.

Setting boundaries didn’t come with out tears. A WHOLE lot of fucking tears. A lot of anger and pain. Panic attacks. CONFUSION. More panic attacks. Then, sadness. Oh, Extreme sadness. How, how do people that have been in my life for over 30 years just stop existing in my world? How am I supposed to be okay with that…????? How do I just stop, caring?

I’ll tell you… Every time I feel my heart soften, I will remember the hate slung against me and I will remember those days of raw pain. My heart breaking as I removed these people from my life. It’s not my responsibility to fix anything. I don’t have to do anything but hold to my boundaries… they’re there to protect me from people no longer here to cheer for me. I no longer have to try explain myself.

How…freeing.

#noproofneededanymore #itsanintuition #empathOUT #superoverit

Set boundaries.

Be okay with others not knowing your side of the story.

It’s okay. The world doesn’t end when you set boundaries. I promise. ♥️

Xx

LS

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