No, no, NO...not AGAIN!!

So as I lay here with my swollen feet propped up on four throw pillows, my two phones laying beside me, quiet when they should be ringing with news of my future, and my trusty Kindle in hand, I can feel the panic I've buried deep down under my outward appearance of positivity, confidence, and faith starting to build to an uncontrollable level! Why Alia, you may ask. Well, I'm going to lay it out for you, so don't go anywhere!! Grab a drink, get comfortable and getting ready for long ass story, but it need to be told and I appreciate you asking, but I hope you're ready for the full and honest truth. You ready??

So I posted in June about my spinal headache, but like always I didn't want to get bogged down with the nitty gritty detail of pain, my pain, that effects my life on a daily basis because I like to appear strong and I usually am.....but not today. I admit defeat today and decided that although it's admirable to not complain, it's also not real! So it's about Damn time for the truth, like it or hate it, it's my truth.

So about 12 years ago I ended up in the ER with horrible pain, pain up until that point in my life had never experienced. They discovered I had an ovarian cyst in each ovary and was pregnant, but that for the stage of a pregnancy to show up, my hormone levels were low and I needed to see an OBGYN the next day. So I went to the man who basically has a monopoly on babies in Doylestown, Dr. Denison. At my appointment he asked me to fill out a 10 question surgery, and of course I did because I listen to what my doctor's tell me to do. They know everything. I was young and scared and he's going to fix me. Anyway, I scored 9 out of 10. I was pretty proud of myself! I've always been smart. But this wastes test I want to pass. It was a questionnaire about symptoms of a disease called Endometriosis. Now I had only just heard about this crazy disease from my future Sister-in-law and future Mother-in-law who both suffer from it. I knew they both were very sick and in a lot of pain and had to take a lot of medicine but didn't know much besides that. He gave a vague explanation that it's when your uterine lining grows outside of the uterus and implants on your internal organs and causes pain. Painful periods and painful sex, which I had just answered yes to on that stupid test. It took everything in me to not ask for it back so I could change my answers. He told me that since it was now confirmed I was having a miscarriage that he wanted to do an D&C to clean out the uterus of the leftover tissue from the miscarriage, but he also wanted to perform a Laparoscopic surgery while I was under to confirm his theory of endometriosis. Two days later on a Wednesday in January, three weeks after I became engaged, I had my first Laparoscopic surgery and my doctor diagnosed me as having very bad endometriosis and removed what he was able to. I have NEVER been out of pain since that surgery! Before this I had bad menstrual cycles which I always missed school for and sometimes had to miss work for and I never had sex that wasn't painful but my pain was easily controlled with a few IBuprofen. After this butcher was finished burning away these spots of endometrial growth with a cautery iron I was never the same. I spent about four years going from doctor to doctor trying to find help, the help most women with Endo usually never find unless they pay out of pocket for the Holy Grail for women like me, excision surgery. During my engagement I had another miscarriage and was basically so over prescribed with heavy duty pain killers that I became a waste of life! My doctors truly couldn't help me and I believe they felt bad about this and got sick of hearing me cry about it and just fucked me up to shut me up. I lost my fiance, my apartment, ended up being moved home as I was at the hospital watch my niece Lola enter this world, and basically was a complete asshole. Obviously I couldn't work thanks to this debilitating condition and pain and the damn pain meds, so after a while I filed for disability benefits and to everyone's shock was approved within a month. I decided a little over a year after Lola was born to stop cold turkey all of my pain meds and decided to go to detox, but honestly once I stopped I didn't need to be there. I stopped on a Thursday night and didn't get a bed until Sunday and was dead sober by the time I got there. Everybody thought I was an author, there undercover, secretly studying them all, so I could write a book about rehab. Lol!! I guess when someone walks in happy and sober everybody there needs to make up some fantastic tale. Anything but that they could ever have been an addict! Gasp!! But I stayed for the five days and depended on muscle relaxers for pain relief for a full year. A very unproductive year, a very painful year but I had something to prove, if not to myself, then to my family which I had put through hell. And I had a niece and I wanted to remember every joyful moment I spent in her company!! Also, thankfully, I did find an amazing doctor who is a reproductive endocrinologist named Dr. Birnbaum who has been treating me for over eight years and helped me get my life back after six years of treatment under his care. And after that year I did start taking pain meds again, but as prescribed, a novel idea, because the pain didn't scare me like it had before. It had become so much bigger in my mind, sort of like the monster under the bed, and I was desperate to never feel it, so I took my meds early and then I took two, and then three...a never ending cycle!! I've NEVER been afraid of ANYTHING before or since then!  Fear has never been my problem, except fear of that pain. But Dr. Birnbaum, after a couple surgeries every few years, got me on the right balance of birth control and pain medicine that I was feeling ready to start back to work!! I even feel in love after seven years of being single!! So everything was great! But after a year of this awesomeness Jeremy and I started talking about our future. We had recently lost his sister tragically to horrible treatment at the hands of a well known, top rated hospital and their mistreatment after seven months of misdiagnosis of a brain tumor on her brainstem. The day after she passed, surrounded my her family and I and her love Demetrius on August 15th, 2013 Jeremy woke up on that Friday morning and said, "Alia, losing Jenn makes me want to have kids." My response was, "Well honey I was just thinking losing Jenn makes me want to get married, to you, as soon as humanly possible." So we had our plan, not in any particular order, but our desires were stated and taken to heart. But as an Endo sufferer on continuous birth control for over seven years and dependent on pain killers to even function, just suddenly deciding to start trying for a baby takes some planning! I talked to Dr. Birnbaum about my options and he referred me to a pain management doctor name Dr. Saulino to discuss my suitability for a Medtronic pain pump. Now they don't just do this for anyone. You have to have tried EVERYTHING under the sun to try to get out of pain before it's even brought up as a future possibly. So in at the end of August 2013 I went for my first appointment and after Jeremy and I asked every question under the sun, we were convinced this was the best thing since sliced bread!! I would be pain free, or close to it, I would have minimal side effects, and since the medicine is delivered directly into my nervous system and doesn't effect my blood system at all, I could safely have pain control while ttc, while pregnant, and while breastfeeding!! I called the doctor the very next day and scheduled my trial for October 14, 2013!! Before that though, I had to pass a psych evaluation to make sure I wasn't suicidal. Wait what? Yes, because apparently some suffers of chronic pain have in the past used the pump to kill themselves. Because it's such a low dose that is used to control the patient's pain, it's up to the patient to tell the doctor truthfully how it's working. If they lie and the doctor in good faith increases it too much, which I guess is the patient's plan, you can die. Sucks, but that's the honest truth. So anyway, I passed with flying colors and was told my the psychiatrist that considering the things I've been through in my life I'm extremely well adjusted, have a great outlook on life, and really very sane!! Ha!! Fooled him! Lol!! So with his blessing, along with my entire family and of course Jer, I checked into the hospital on a Monday, and on Tuesday I had the lumbar puncture to insert the catheter which was connected to an external pump. He turned that baby on and within an hour I was completely out of pain!! None, zero, zilch!! Of course I felt AWESOME so I got up and walked all around the hospital, snuck outside a few times to catch a smoke, and woke up a 5a.m. on Wednesday with the WORST headache of my life!! And when I sat up it impossibly got even worse!! They explained I had a spinal headache. WHAT!? I had no idea such a thing even existed!! Apparently when they "recommend" that I lie down for hours after my procedure this was the reason. Ohhh....Well I accepted my fate and my doctor decided to remove the pump because even though my head was killing me, the trial had been a huge success!! I headed home on Thursday and suffered with this spinal headache until the following Friday!! My boss was not happy I had to miss another week, but thankfully it went away unaided and I was never so relieved in my life! When I say a spinal headache is unbearable I mean that in the absolute definition of the word unbearable!! It's truly the absolute worst headache in the world! Take the WORST migraine headache and multiply it by 100! I prayed to never experience that misery ever again!!

So I procrastinated scheduling my surgery, due to missing that extra week of work and my extreme fear of the dreaded spinal headache which my chances of getting were much higher with the actual surgery than with the trial and look how that turned out!? So eventually I put on my big girl panties and in January I spoke with Dr. Saulino and he and my surgeon picked the soonest date available, which was March 4th, ironically Jeremy and my 2 year anniversary!! On February 17th I headed into center city to travel to three different offices containing three different Thomas Jefferson doctors, the a last being the office of my neurosurgeon Dr. Sharan!! He was brilliant and funny and totally confident in his abilities to place my pump as I desired deep under my stomach muscles on my left side and said I would look awesome after I lost all my extra weight which he rightly assured me I'd lose (although I'm pretty sure he assumed I'd lose it differently than I did) and no one would be able to see the hockey puck sized reservoir hiding in my body. We went over pre op instructions and I felt really good about the whole thing. I was only nervous because this was my first major surgery, where all of my 7 previous surgeries were Laparoscopies and same day surgeries with between 3-5 very tiny incisions and a recovery time of at the most two weeks! This surgery they recommend 3 MONTHS until you're fully recovered and they were talking about 4+ INCHES for the stomach incision AND the back incision!! Of course having the job that I had I could only reasonably take a month off for recovery and since I had been working only 30 hours a week I wasn't even eligible for one week of paid time off so it was a big decision and I was hoping to not be to much of a burden on everybody. Jeremy and I arrived at the hospital at 5:30 on Tuesday morning the 4th of March and I was bravely wheeled away from my mom and my love around 6:30. I saw Sharan again, got my IV poorly put in (why do anesthesiologist get paid so much again??) and was wheeled on back into the operating room where I remember nothing and woke up in recovery the new home for a Medtronic pain pump! I stuck to my plan and laid completely horizontally after I got to my room and was waited on hand and foot by Jeremy, who brought me my favorite red velvet cupcakes to celebrate our special day, my mom who has never missed a single one of surgeries and is an old pro by now, and Kira who brought me beautiful tulips and was sweet. I got a horrible roommate and got no sleep after everyone left...longest night of my life, and I didn't get up for my promised 24 hours of being horizontal until the next day about an hour before I was released!! My mom and Kira picked me up and that was the start of the most painful car ride of my entire existence!! If you're from Pennsylvania, you'll remember how BAD the roads were after the winter we had, and ever bump, pothole, and jolt was just BAD!! Anyway I got home and never got the dreaded spinal headache and recovered extremely well!! My surgeon was extremely proud of his work on me and at my post op he wished me an awesome six or seven years of pain free living and he'd see me when it was time to replace my pump!! I got the pump turned on exactly two weeks after surgery, on March 18th and that was pretty bad too. They inject a big needle through your belly and into the pump to withdrawal the saline or old medicine at refill times and then inject the full supply of medicine that should last about 3 months. And then....we turned that baby on!! It took about 24-48 hours to feel anything and of course that first-time I didn't feel much of anything but every two weeks I went back and they used a remote control device to check it and update the new dose which again doesn't take effect for about 24-48 hours after the increase. I had a couple nights at work where I was suddenly slammed with extreme sleepiness and would have to clock out and go to sleep for an hour, but when I woke up I was fine and felt great, although my coworkers about had a nervous breakdown! I got to a level of the pump where I was able to completely stop all of my oral pain meds, and started weaning off everything else and completely stopped my birth control!! My dreams were finally coming true!!

Or, so I thought!

On April 24th I had just worked five days in a row, it was a Thursday night around 11pm and after putting on my pajama pants, my hand brushed over my incision and I was shocked to feel a pretty good sized lump a little to the right! I freaked out and decided to call Reina, who I've decided is the last person to call if you're freaking out!! But I didn't want to scare my mom, so she was the next choice! "Alia, call 911! This is REALLY BAD!" After I calmed her down we decided I'd go to sleep but set my alarm for two hours from then and we'd see how it was doing. Woke up at 2am and it was gone! Like it had never existed. Thank you baby Jesus!! I didn't work that Friday or Saturday so it didn't come back until Sunday after my shift I got home and there it was again. And this is how it went until the end of May when my nightly lump turned into a permanent lump. My Doctor's were worried but every time I saw them up until that point the lump was never there because doctor's don't do evening appointments!! Unfortunately it came and stayed and everybody got to see it, but the general consensus was keep my binder on and pray whatever was happening would heal on it own. I had a Cat Scan and all it showed was collection of clear fluid but because the hole that could be causing the leak wasn't able to be seen by anything due to the fact that it was most likely extremely tiny. Even the catheter can barely be seen since its about the width of angel hair pasta! So we all prayed and adopted the "wait and see" mind frame. It was the wrong mind frame! On June 2nd my worst fears were realized as the predicted spinal headache started to rear its ugly head and by June 7th I went home after work and admitted it's here and I don't think it's leaving. So I got on the horn the Monday and called everyone and anyone I could think of!! I had already called my work and they assured me it was okay and to focus on getting better. Dr. Saulino I continued to see every two weeks but as a pain management doctor he could only decrease my meds in the hope that when and if I had surgery I wouldn't be bombarded with a high dose  of my pump meds and since my pain relief had gone from amazing to abysmal and I had to basically double my previous does of oral pain medicine. My surgeon in between his weeks of vacation referred me to a different Jefferson doctor to do a blood patch. I was desperate at this point even though I knew with every part of my being it wasn't going to work. The blood patch is when they quickly withdrawal 20cc of blood from you hand with the biggest gage meddle the can use (woke me up out of dead twilight sleep it was so painful!) and inject it into the back over the spine in the hopes it will cover the hole in the membrane surrounding the spine, thus sealing the leak, curing me of my headache, and helping the lump go the hell away!! It didn't work. I waited the week they told me to, even though it was obvious to me it had failed, which isn't that uncommon, but at this point I was completely convinced they needed to go back in, surgically, and see for themselves what the fucking problem was!! I was desperate to get rid of this headache!! My boss kept saying to focus on getting healthy and that my job wasn't going anywhere but damn people, I have a life!! I have a job! I have respobiliteies and bills and a boyfriend and my dogs to get back to!! HELP ME PLEASE!! So we thankfully got me scheduled for August 19th which was weeks away, but my surgeon, the world traveller, was off in China, I'm sure having an amazing time! Now I just had to get through  mourning the loss of Jenn which had occurred just a year ago on August 15th, and my 34th birthday on the 17th. So a year after our conversation we had accomplished nothing of what we had planned and in fact everything looked extremely grim. We spent the morning of my birthday with Jeremy's mom and boyfriend Jim, remembering Jenny and nobody broke down, which I thought was amazing. We travelled back to my parent's house and actually had a really nice night, even though everything in me just wanted to curl up in the fetal position with my hands over my ears and weep. We ate a delicious meal of Syrian food, Jeremy brought a cake and cupcakes for the kids and spoiled me with my first real piece of jewelry, from him, New headphones so I could still read by listening to my books, and another adorable stuffed animal to hold after surgery. He even brought a pinata that he stuffed full of candy for the kids to break (which we never got to do but is hiding in the closet and will hopefully be smashed next weekend) and Lola did her ice bucket challenge. Of course I'm the only one who was willing to do it the next day even though I felt like complete and total Shit but my sisters bailed. The following day, Tuesday, I had my surgery.

When I got there I informed everyone I was not spending the night that if I gave myself a spinal headache by getting up I sure wouldn't notice and I was NOT putting myself through the hell of a roommate again. They gave in and off it went after another horrible IV placement, after she messed up the first attempt. In fact I woke up with a another attempt on my other arm and another IV so that should obviously confirm my earlier statement of why in God's Holy Name do these people make so much money!? They told me since this was the 9th surgery I was having they were going to use Ketamine as part of my anesthesia and although that freaked me out, as long as I stay asleep, have at it. I woke up I think in recovery but all I remember is them telling me they had to give me a valium and asked if they could look at my back, which I was lying on...I'm thinking that's why I maybe was a tad upset!? I woke up again to my mama sitting next to me and the nurse giving me more pain meds. Getting coherent enough to convince them to let me leave was maybe the best acting I've ever pulled off in my life! The ketamine packs quite a punch and then add a valium to the mix and I could barely walk in a straight line or even feel my legs!! But I did it and got the fuck out of there!! My mom informed that my catheter was in fact cracked and that's where the leak was coming from!! So the blood patch never had a chance of working because blood doesn't heal plastic! My instincts were right and the "wait and see" approach was an utter and complete FAIL!! I woke up the next morning and my spinal headache was GONE!! If I could've I would have done a dance of joy! I wish people would listen to me because I know my body well enough to KNOW when something is wrong. Two weeks later I saw my PM doctor and he was so happy for me, and of course apologized for being wrong, and we refilled my pump, upped my dose, and I headed off to go see my boss. Mind you the Friday before I had had my post op where I thought I would see my surgeon to discuss how he fucked up my life, but he didn't show and the nurse informed me that I was not to drive for four weeks! That would be September 26th!! Well I was not going to just sit around for four weeks broke, bored, and finally feeling well enough to do, well, ANYTHING. So I called my boss to see if I could come in to talk to her, hoping she would send me home with leads so I could at least start making commission again. So after my appointment with Saulino off to King of Prussia we drove. All my coworkers were thrilled to see me back on my feet and happy and feeling great!! I got to see Scott, the guy who trained back in December 2012! He had come to PA to work a few weeks ago and I remember saying to Jer the only thing that will keep me from getting my job back is him. Well I unfortunately was right on that count too. Kayla informed me that it had nothing to do with me, that I was a very good TM and brought great energy to the office but the head guy (her boyfriend) had brought Scott over from our competition and he was doing great. Basically they thought Scott would save them. As of today when I write this, he hasn't. But basically my position they promised me wasn't going anywhere, had gone to him. I adore him so please don't think I hold anything against him. I NEVER in a million years would have ever imagined they'd hold my job for me for three months except that they repeatedly told me they would!! A few weeks later I filed for unemployment benefits which as of today I've been approved!!

BUT! Oh how I wish this story had an awesome and happy ending, but remember guys, this is ALIA'S life so why would anything ever go right, or simply, or smoothly!?

2 weeks ago today I went out the garage to smoke a cigarette and as I sat in the metal folding chair I noticed some weird pain when I sat down...and then I froze, and the blood rushed to me head and chills broke out all over my body. This feeling is extremely familiar! PLEASE GOD, NO, NO, NO, NO!!! I slowly reached my hand behind me and with shaking fingers, and lightly felt my back, just a little to the right of my incision...FUCK!! All I could hear in my head was "Its baaaaccckkk!!" in a really chillingly scary voice! My nephews and Reina, and Mom were inside so I stomped inside and with a quite and demanding yet horrified voice asked them to look and please tell me I was wrong! After I lifted up the back of my shirt and slowly turned around, the gasps were all the confirmation I needed. Luckily I had an appointment with my surgeon the very next Monday, since I had blown off my appointment that Monday thinking "What's he gonna tell me that I don't already know? He probably won't be there anyway!" Thank God I have no faith in most doctors! So hoping it would follow the same pattern of showing up only in the evenings I snapped a million pics Thursday night. But when I woke up bright and early on Friday it was still there. Hmmm...not following the same pattern. At the appointment I found out that not only had my catheter cracked, I had some how kinked an unkinkable catheter!! And not just kinked it but managed to bend it into a 90 degree bend and the crack was in the bend. Thankfully my surgeon promised me that he would absolutely NOT let me go through what I went through before and he would not be fucking around this time. He was going to set a date for surgery so God had a time table of by when he needed to heal this and that we were going to cross every finger and toe and appendage that I didn't need surgery or get a spinal headache again. Well the very next night I noticed my lump was pretty big, like the biggest I'd ever seen it, so I snapped some sideways view and some angled shots and emailed them off to his nurse. Well Thursday a week ago I got a call from Carol his nurse and she informed that we needed to schedule a for real date for surgery since obviously this was progressing very differently than last time and hopefully they could get me in BEFORE the damn headache started....then she looked at his schedule!! He's completely booked up through December!! So she said let me call you back, I'm going to talk to him and see what we can do. So the solution is, in November he is going to use the Saturday morning of the weekend he's on call to perform my surgery....we just don't know when this Saturday is yet because Jefferson has yet to release the November on call schedule!! On top of all of this Sunday I woke up with horrible edema in my legs, feet, and ankles and my right hand and my period. So even though Jeremy and I finally decided to start ttc in September it was also a big old fail but one I am extremely thankful for. 9 months of pregnancy looks hard enough but 9 months of pregnancy with no pain relief AND a spinal headache sounds like the worst kind of hell and I lived through two and a half months with a spinal headache and was convinced nothing could top that, until I was put in this position wondering for over a week if I was pregnant!! God is good!! So I've sworn off ttc for at least 6 months until this pump is completely fixed or removed. I'm giving it one last chance and then it's being taken out. I'll seriously have to pray if I would ever try it again, but I can't tell you how amazing the pain relief is and for someone who has lived with chronic and breakthrough pain everyday for over a decade, I really can't say at this point what im willing to do to have constant and complete pain relief. As of yesterday, I started with the same symptoms as the beginning of the spinal headache as I had back in June and they continue as I write this. But I had to tell my story before my ability to function, to think, to DO is stolen from me again in a few days. This is MY life, MY story, and it's NOT okay. I am NOT okay. BUT, I'm a strong ass warrior and NOTHING, not surgery, not daily pain, and not a spinal headache will keep me down for long and that's my promise. When you have no other choice but to give up or stay strong and fight, I will always pick the winning side of that battle and fight until I can't fight anymore, which after all of this, will be when I'm dead! Whatever happens after I write this, thank you for reading this extremely long blog and I hope you'll keep me in your prayers or thoughts if that's not your thing, because although I'm tough, I'm surely going to need every last one of them to see me through to the future I want and feel I deserve. A happy life, filled with no pain and lots of babies and my amazing Jeremy and my wonderful family all around me! That's all I want, and I don't think it's too much to ask for.

Update: Literally just got off the phone with Carol, Dr. Sharan's nurse...my surgery is a week from today, the 30th of November. I swear this pump will see everyone of my favorite days taken from me!! My anniversary, my birthday, and now Halloween!! But I'm willing to give them up if it's for my health. No one should have to live like this my friends. All I have to do is now make it another week!! Thank you God!! Sorry I didn't go back and revise this but my head hurts too much and it was exhausting just to get this all out!!

It's all the about the Kindle Baby!

I seriously am done! On top of a horrible spinal headache, my boyfriend has gone radio silent, my one new BFF tellls me that driving her home from work for six months and being the very best friend she could ask for, driving her ANYWHERE she wanted, even on my days off and even if it would make me late getting back to work, doesn't prove I'm a good friend (and the entire reasoning behind this is I respected her wishes these last two/three weeks after her boyfriend cheated on ...her and didn't call her per her request, she had literally told me she wouldn't answer if I called, so guess what, I didn't call!! Like most drama queens they say one thing and mean something else!! Been out of the dramatically female relationships for too long I guess! Now during these past four weeks I've had soooooo much going on in my own life, switching offices to King of Prussia where I literally had never met anyone who worked there, trying to prove to the new ladies and boss I am good at my job and am a hard worker, which I did! Then all last week doing too much while my headache took over! I kept making excuses for the pain not wanting to admit what was happening! To top it off I've got a very angry and upset Jeremy on my hands because last week his stupid schedule changed and he hates his job!! Now NONE of that matters...i can recover from missing another week of work, I can get over a lost friendship, I can wait for my love to feel like he can talk it out and be present again... BUT I CAN'T FUNCTION because my Kindle Fire HDX is on the Fritz!! I can survive all of this other BS but not without my KINDLE!! (People don't get why I have a spare!? Ha! It's because I have my priorities straight and am self aware enough to know I have a need, a need to read!) Ahhhh, no the humanity!! So I gave in and called Amazon and they're sending me a brand new one!! SERIOUS MELTDOWN AVERTED!! Lol!! But Amazon, get it together man!! In March I had to send back my spare due to mechanical issues and now this! The Kindle just shuts off on its own, for no rhyme or reason. I hit the power button and it turns on and then shuts off again. I go to turn it on and it's already on and then I turn it off and then have to turn it on again!! I feel like I'm losing my mind! Also, my WiFi at home only stays connected for five minutes and then, while in the middle of something, have to go into my settings, turn my WiFi off and then right back on to get it going for another five!? If I wasn't obsessed with your product when I DOES work, I might be investigating a new tablet.

P. S. Although all of this is true, this is a lighthearted comedic look at my life so please don't get pissed at me for poking fun AT MYSELF!! None of this was written to hurt, harm or dis anyone!!