A New Pair of Pants

As the time goes on, I continue to have procedures, try new medications, and participate in pelvic floor therapy (which has now totaled several years)  I have not made much progress, the insurance is not wanting to approve any more sessions.  I do participate in Myofascial release which is a type of massage technique used to break up the scar tissue in the fascia. This is in hopes of helping my Cerebral Spinal Fluid to continue to flow without obstruction throughout my spine and to my brain. I have monthly membership at a local massage place.  Not many masseuse are trained in this technique, I am very lucky I have found one close to my home.  I continue to be wheelchair bound when going outside of the home shopping etc.  The spasms from the Pudendal nerve and injury to my spine is much to great to withstand walking/standing for longer than just a couple minutes.  My Dr has ordered an electric scooter for me, although I have not yet received it.  I was recently able to take a trip to

My worst fear happened.  I was leaving the GI Dr and taking my hubby a Starbucks. I was stopped at an intersection when I was rear ended and then hit the truck in front of me.  The impact was slight, but unfortunately being sandwiched between two cars was what caused the most damage. I was actually on the phone with my hubby at the time of the accident (bluetooth of course), he heard the collision) he immediately left his work and came to the scene. He arrived before EMS.  I instantly felt pain in my neck, spine, and legs.  The car that hit me stuck around, the truck I hit left the scene.  I had no idea what my car looked like from the damage and did not want to know.  The only thing going through my mind at the time is wondering if the hardware from the surgery I had several months prior was ok.  Normal healing time for a fusion is one year.  It had not been a year and I was mainly concerned about my spine and the history of my spinal cord injury.  I could feel the inflammation in my

Here is a post of one of my Pet Peeves, something I prefer others do not do to me or anyone with a Chronic Illness for that matter.  It is not only rude, but completely indicative of "you do not understand one bit of what I go through" or you would not do it.   I have friends that say "I will call/visit you on such and such day"  I arrange my schedule, look forward too, shower (with all the energy I have),  and get ready for their call/visit.  I wait, I wait a little longer, I fight back the urge to nap, my body gets very tired, but I tell myself I have to stay awake because "so and so" is visiting today.  I throw off my routine/schedule for someone that never calls or shows up.  Never has the decency to even text to say they aren't coming.  Do not do this to me (or anyone that is chronically ill).  It is beyond rude, it throws off my routine.  I could have napped, and not fought my body on the horrible fatigue I felt waiting for your call or for you t

What a difference!  So each year Phil takes an Annual Guys Fishing trip to Lake Powell in May.  I usually go to Michigan to stay with family during this time.  Last year my bio mom came here to help me because I had my tonsils out.  This year there was a possible invite on the table for me to go part of the week on the fishing trip. Well, let me describe briefly how that went.  The friend he goes with and his girlfriend met us for dinner to discuss the possibility. The conversation was initiated by the girlfriend who I have only met a couple times.. "The boat ride out there is going to be really rough on you, the houseboat seats are old and uncomfortable, you have to climb a ladder to the roof to sleep on an air mattress every night".  At that point Phil's friend jumped in as said "it's not that we don't want you to go, it's that we care about your safety. He gave me some scenarios of what may happen if the wind was high and the bass boat was rocky on the

I decided to travel recently, which, since my injury, has been very minimal.  The first trip was a short roadtrip with Phil, Jordan, and his girlfriend (Hannah), to Vegas for a family Reunion.  We were meeting up with my family who I had not seen for up to seven years.  My sister, Wendy and her husband from NY,  as well as his side of the family would meet us out there to visit with my niece. She started teaching 8th Grade Orchestra last year in Vegas.  My nephew who is now living in Steamboat Springs, CO as a Ski Instructor would also be flying in.  Jordan has not seen his cousins since prior to going into the Army when his Grandmother passed away in 2011 and we had the Celebration of Life and the family all flew in to spend the time together at our home.  My sister Dawne from Phoenix was also going with us.We all rented a house and discussed what the weekend would look like as we would only be spending Fri-Sun with them.  The rest of the family would be there a bit longer, until Wedn

I guess when you don't feel so well, you just don't feel like doing much.  That pretty much sums up my day.  I just don"t even move, because when I do, it produces pain. So I find sitting in the recliner, motionless is often the way to be.  I am trying to find activities to keep my brain active because I know this is no way to live day in/out.  I have got to find things to do from a reclining/sitting position.  I have gone over the fact that many friends have drifted, which I have come to terms with.  There are some friends that have not, and they are incredibly loyal, checking in daily. Sometimes hourly conversations.  I would say on an average week I have a visitor which sure breaks up the monotony of the day.  For the most part, I do not leave the house accept on the days I have an appointment.  Phil usually takes the car which is just fine by me.  I often relax, in comfies, I struggle to bathe, but I get it done..eventually.  Bathing is the most painful part of the day

Throughout the years as a Social Worker I have assumed the role as a Case Manager and helped hundreds of my patients/clients apply and be accepted for Social Security Disability.  Back in the early 2000's it started out as a paper application, 15 or more pages we would do together (I would do for them, as many were too sick to do themselves). As years progressed, it has now become an online version of the application.  I never wanted to have to apply for Social Security Disability, let me just get that out there to clarify.  The way it works is this... I am on a Long Term Disability Policy through my previous employer for two years.  They require me to apply for Social Security.  If I am denied, they have lawyers that help the appeal process.  If I am approved, Social Security becomes the first payor and Long Term Disability picks up the remainder of what SSD doesn't pay for the rest of the two year term of the LTD contract.  So, upon this agreement Long Term Disability (about

Its difficult to explain to "healthy people" the difference between my good and bad days.  As time goes on the picture becomes more clear.  As we thoroughly enjoy our UFC parties they become increasingly difficult for me. This is just one example I can think of.  We get the house "ready" which requires more standing then usual, preparing some food (more standing then usual) and then the entertaining (more standing then usual).  Let's just say the next day is a bad bad day.  I typically am in bed by 3pm and stay there all night.  The increase in inflammation from standing causes an increase in fatigue.  That's an example of a "bad day".  This will almost always happen after any social event.  I often have to "pick and choose" what I do socially.  I will always pay for it the next day, and sometimes two or three.  Sometimes things just aren't worth it to me.. no offense to anyone.  My good days I am able to get out of the house, althoug

Having a great deal of maturity to handle a chronic and intractable illness is a must.  I look at some of those that surround me and just know, that I am way ahead of them in maturity level.  Maybe it's this disease, maybe it's my level of education, my values, the way I was raised. Whatever it is, I just handle things differently.  One example is social media, but that will have to be saved for a post all in itself.   Another example is responding to phone calls and text messages.  I tend to respond within a reasonable amount of time, unless I am in an appointment or sleeping, I usually answer right away.   I have had friends tell me "so sorry, I didn't get your message". Come on now, we don't live in the dinosaur age.  There is a cell tower every so many miles.  Lets get real...the reason you didn't respond is because you didn't want to go to that lunch I invited you to.  Just grow the balls to say "I am sorry, I can't or didn't want to

I have very much appreciated everyone in my life.  Words that constantly ring in my ears are "call if you need anything".  Those are such precious words to me.  The song Lean on Me plays over and over in my head some days.  I often hear it and become tearful.  Why?  I will tell you why... When you become chronically ill, isolation just happens, you become more vulnerable for abuse, and depression, and you grieve.  Leaning on friends during this time is so important. But, where are they?  They go on with their lives, that's where they go. Most do not understand what it's like to be chronically ill.  If you try to educate them, lets say post about it on facebook, then you often get called out for "trying to get attention".  If you post about how you are feeling, you get called out for "complaining".  It's a lost battle.  People expect you to be able to do the same things you once could do.  There are very few people who understand it is difficul

There have been many times that I have been called a hypochondriac.  Due to my incessant need to know what was wrong with me.  During the time period from approximately 2010-2016.  I struggled knowing the names of the multiple diagnosis I would come to have and during those times I was injured and  diagnosed with even more.  One of the problems with these diagnosis are the rarity of them.  Arachnoiditis is  recognized by the National Organization of Rare Disorders.  The link is as follows:  NORD-Arachnoiditis  is on the list of rare diseases. It started in 2010 when I began having "back pain", I started having treatments from my sister who is a Chiropractor.  When she felt it was beyond her scope of practice she sent me to the Core Institute to be evaluated by an Orthopedic Surgeon.  I had an MRI and xrays and was told they did not see anything "abnormal".  By this time it was 2011, I had been on pain medication for over a year, now caring for my mom who had Parki

January of 2017 I started to receive Botox injections into the pelvic floor muscles.  These would be done as a surgical procedure at St Joe’s hospital under general Anesthesia by Dr Michael Hibner.  These injections are meant to relax the pelvic muscles that are in a spasm.  The first go around I as extremely nervous. I was becoming more and more allergic to tapes and adhesives and it seemed they were using them on me each time I went to the hospital, just being careless.  When I arrived I told them immediately of my allergy, although it did not seem to help, I still ended up with tape and adhesive on my body that time.  The Botox took place, I went home the same day, I remember going over and signing the long list of side effects that could happen, but I was hoping none of those happened to me. Once again, we are dealing with mature issues, if you can’t handle reading them, stop now. I have had to handle every single thing that has happened to me without giving up.  So, if you can gi

Throughout the past few years I have been blessed with some very helpful, compassionate, understanding friends.  I have also had to bear the hurt, rejection, and sometimes betrayal of those once closest to me.  About a year into my ordeal, I would come to understand just how chronic illness would impact friendships and become peaceful a year or so later with learning to be alone.  I was always a social person, the first to create an extravagant event at my home, invite 60-80 guests and make "special treats" homemade.  This, I could no longer do.  I had a history of being "fun", "life of the party", I used to enjoy the occasional bottle or two of wine, and the crazy events that arose from them.  Lots of memories had been made over the years within my group of friends.  My health no longer allowed me to be this person, the pain put a stop to the fun, no doubt.  One thing I could still do was give.  When I was invited places, I still offered to bring homemad

I waited November 2016 to June 2017 for Dr Kaibara to make his decision to do the 3rd surgery to correct the Bertolotti's syndrome for the 3rd time.  I had to stop working the Fall of 2016 as I was physically unable to get around any longer.  The driving had flared up the Pudendal Nerve again causing the Pelvic Floor Myalgia (Spasms).  My pain was through the roof. The L5 Vertebra had grown through the Sacrum/Ileum on the right side for the 3rd time.  It had been explained to me it was due to the bone graft used by the Orthopedic Surgeon that had Reabsorbed (disintegrated) and allowed it to happen again.  My visit to the Mayo Neurosurgeon, was just for a second opinion in November of 2016, but the imaging had showed some things that now needed to be addressed.  The pelvic xray showed Chondrosarcoma, how did this come up again?  I thought this had been ruled out?  It was always on the back of my mind.  In the same xray, I now had severe degenerative joint disease in my hips (osteoar

To say I have struggled through some of this is an understatement.  I will share with you just a few of the memories that really stand out.  I have already shared "the night of terror" and how I was treated by a supervisor at work, nothing could compare to those.  As time went on, other situations I exposed myself too, started to make me aware that I was different.  After I was injured in the second surgery and had difficulty walking, I had been invited to a birthday party of some friends.  I always like to give special gifts so Phil and I went shopping all day to make sure the gifts were just that...special.  I made up a couple special baskets for my friends.  These were friends of many years.  This was one of the first experiences realizing shopping had become a great difficulty.  By the time I had got to the party, I was unable to walk, and my pain was at it's highest from shopping all day and using my legs. I was so excited to give my special gifts.  I gave the gift

Throughout my ordeal I have not only used medications to manage my pain, but many other non-pharmocological interventions as well starting from the very beginning. Working in Palliative Medicine, I had access to some great knowledge in regards to the tools used in pain management.  I knew medications like the back of my hand, but I also knew other tools to help distract the mind when it came to acute and chronic pain.  I have tried most of these "tools", and I often get slightly frustrated when someone says "have you tried"... or comes to me with their latest and greatest "cure".  First of all, their is no "cure", second of all I have spent hours upon hours tending to my pain, and researching options that were the best for me and my condition.  I have reasons I can and can not try certain things.  Physical Therapy has never been an option, as movement required of my legs or being on my legs only causes inflammation in the lumbar spine thus making

As the months pass and I await a call from Barrows, the pelvic pain has returned and I am seeing Dr Hibner.  The Arachnoiditis is in my Lumbar and Sacral nerve roots.  Well, guess where the Pudendal Nerve is?  It sits at S2 in the Sacrum, so now those are all adhered together, one possibility why the pudendal neuralgia has returned.  Pelvic Floor Spasms are difficult to describe.  I feel a pulling in my hips when I stand, so it makes standing difficult, my sits bones (butt bones) are painful, so it makes sitting difficult, and the SI joints are extremely painful, so it makes walking difficult.  I am comfortable in a reclining position and laying down, I sit on ice packs throughout the day.  January of 2017 was my first Botox injection into the pelvic floor, then 8 weeks of pelvic floor therapy twice a week resumed.  May was my second round of Botox and October was the 3rd round.  I got a call in June 2017, to come in and meet with Dr Kaibara which always requires Phil to take me in t

So, I was back to work in the Fall of 2015, I hung in there until 2016.  I am not going to say it was easy.  I was still working 2-3 jobs.  Hospice, Wickenburg Hospital, and Gold Canyon.  I saw myself struggling, I was getting behind.  As time went on, I struggled with getting my documentation in on time, because I was so fatigued when I got home, I was going to bed by 7:00pm.  I saw myself struggling juggling those 3 jobs. Prioritizing my life.  I was having a hard time physically, getting slower, the pain was increasing.  I almost feel Deja Vu symptoms again I tell my husband.  He thinks I am crazy. During one of my ER visits for pelvic pain, the CT Scan showed 'pseudoarticulation of L5", I didnt think much of it, as this is what Bertolottis Syndrome is and remember, I have had 2 surgeries to fix this previously.  But, as the pain increased, I had another ER visit, and another CT revealed the L5 vertebrae had grown through the sacrum again.    This could not be happening,

As the months went on and the hospitalizations and ER visits became more frequent I knew I had to do something.  It was taxing on not only me, but my husband.  It was routine imaging, IV steroids to bring down the inflammation and pain control.  By this time, I was in touch with Dr Taro Kaibara at Barrows and felt comfortable with his expertise.  I had my pain management Doctor who I trusted.  By this time, I had probably had 20 different imaging scans ranging from CT, MRI's, bone scans, and xrays.  I had the answer, it just wasn't the answer I wanted and there wasn't a cure.  So, I had to move on to the next step... a plan.  I was experiencing severe fatigue driving Phil to work after his seizure.  This was a 3 month ordeal. I was driving from Surprise to Phoenix to Wickenburg and back.  Driving was flaring up the Pudendal Nerve causing spasms in my pelvic floor again.  I made an appointment with Dr Hibner.  I had been symptom free for a year and a half.  I figured I was

My goal is to write, and not just for me, but for others, who need to be educated about these rare diseases, because believe me, they are becoming more prevalent.  With more and more Failed Back Surgery Syndromes and the NUMBER ONE cause of Arachnoiditis is Epidural Steroid Injections into the spine. Epidurals are not FDA approved for injections into the spine. It is on the label that it can cause neurological injury (Arachnoiditis). Doctors (especially pain doctors know this) and should not be offering such injections.  You, as the patient have every right to refuse these injections.  I, only want to educate you. That is my goal, if I can prevent any one of you from getting this condition, then I have done my duty, I have accomplished my goal.  You do not want this.  I did not get Arachnoiditis from an Epidural, mine was from spinal trauma, but Epidurals are the number one cause and please think twice before getting one.  Here is the link to the FDA website.  FDA warns of Epidurals

The end of 2014 is coming around. I have had a couple MRI’s that were conclusive diagnosis for Arachnoiditis.  I was now in pain management for this condition and treatment for Pudendal Neuralgia.  A Social Work Colleague of mine has spent years working with a Physiatrist at a Rehabiliation Center and kept in contact with him.  She contacted him and he was willing to see me as a patient.  This was a blessing, the beginning of a BIG blessing. Dr Raj Singh is a Physiatrist with Barrows Neurological Institute. He deals with neurological injuries. He saw me immediately in the Scottsdale location, Saturday appointments so Phil could go with me and drive me.   He immediately began ordering specialized imaging tests, as he believed and knew something was not right with the surgery that had been done.  He ordered a 3D CT Scan, a Nuclear Bone Scan.   He suspected possible Osteomyelitis (bone infection), but my blood work did not indicate as such.   The imaging came back and all I can say is WOW

I had to make a choice to enter pain management, this I am not shy about, and happy to answer any questions anyone has.  Sure, there is currently an "opiod crisis" please realize this is when they are used improperly, misused with other medication, at high doses, purchased illicitly, and mixed with alcohol.  The pain Doctor I chose has been a Godsend.  He instantly tried to get a handle on my symptoms. I have been through a lot of medications, some were helpful, some not,  Some caused unwanted side effects, and some I chose not to put into my body.  In 2014 we began discussing the option of a Spinal Cord Stimulator, made by a few different companies, it would be my responsibility to research the different options.  I believe I even took some material on one of the first visits which included a DVD.  A Spinal Cord Stimulator (SCS) is not a Drug Pump.  It is a Neurostimulator, it blocks pain signals to the brain.  I also had a choice of the drug pump, but with my newly found co

A visit to my Primary Care Physician in early 2014 was the start to my healing process.  Dr Patrick Roscetti has been my PCP for 10 years.  First with Cigna and now with Honor Health.  He has been with me through this whole ordeal and has been the facilitator in much of my healing.  He did his Residency at St Joes so happened to know the famous Dr Michael Hibner who treats Advanced Pelvic Pain. During one of my primary care visits Dr Roscetti said to me I believe you suffered "Cauda Equina Syndrome and it may have damaged your Pudendal Nerve".  He was right on!  It sure as hell did.   And I thank God for him and his expertise every single day.  Without that knowledge I would not have had some of the treatments and symptom relief I have had thus far from Dr Michael Hibner at St Joes.    I saw Dr Hibner early Spring of 2014.  He ordered Pelvic Floor Therapy and the use of a topical cream for the nerve immediately.  I won't go into detail about therapy, but my internal muscl