The Healing Continues

I can’t get journaling done because people are constantly interrupting me because I forget to log out of my social media accounts.  (I wish being logged into Facebook with a tab open would prevent notifications from appearing on my phone.  Too many things going on that I can’t miss anything important so going silent isn’t an option right now.)

This post is going to contain information that happened to me before my previous post was published.  It makes things relevant.

I was supposed to start a part-time gig starting the first week of January that ran through the month of February.  I ended up getting sick at the sink.  I tried to clean myself up which included brushing my teeth which made me sick again.  (That was my fault though.  I don’t know why, but I have a gag reflex when I brush my teeth but I’m fine for throat cultures and dental office visits.)  I called my “supervisor” to let her know I had a stomach bug and wouldn’t be able to make the first of my two visits for the month.  She wished me a speedy recovery.  A few days later she asked me if I was willing to make up the missed time over the weekend, which I agreed to.  The day before I was to go for my first shift, a mass email was sent out saying the program was cancelled nationwide due to no sales increases being seen from the program.  Companies need to learn from this.  Everyone who agreed to these shifts thought they were “simple and fun demonstrations.”  This was not accurate to say the least.  We had been hired on as salespeople in disguise to help promote new cell phone plans at a popular chain.  SALESPEOPLE.  I’m good at “selling” apple berry tarts because the sample speaks for itself, but I don’t know how to sell phones and plans.  Meanwhile, we’ve all been told to keep all the promotional materials that were sent to us and labels would be mailed out so we could return everything.  At this point, the program has been over for two weeks from its original end date and I’m sick of all the boxes laying around the apartment so I have taken it upon myself to recycle and throw the materials away.  I’m disappointed that this gig fell through because I was relying on it as a source of income to help pay for things.

The “intelligent conversations” I talked about in my last post have been happening on a more frequent basis.  Unfortunately they often start late in the evening when I don’t have much time to put into them and they carry on into the next day.  It looks like I’m on my phone all the time, which I’m trying to avoid.  I already realize things are going to get complicated writing about the people who are important in my life.  These conversations are being carried on with someone I will call “Rage.”  Sharing background information might be helpful.  “Rage” and I started talking online back when AOL Instant Messenger was the hottest thing.  We had a mutual friend circle so my parents were fine with it.  Keep in mind I was still in high school when we started talking.  We kept in touch and met in person for the first time in 2009.  We’ve continued to keep in touch and met once again, this time I was not at all happy with their behavior and let them know.  Communication and honesty in my relationships prevented the relationship with “Rage” from becoming extinct.  Like a true friend should, I have forgiven “Rage” for their actions.  If the wind brings “Rage” in my direction, I told them to let me know because it’s my turn to show them around town!

I have been feeling depressed and less motivated over the past several weeks.  I feel like my medications are not working like they used to.  At this time, I’m not too worried because I have the support of a few people who I talk to nearly each day and know me well enough to know when something is off.  One of these people I met in the hospital and have been communicating with since.  She lives not too far from me, since the move, which is nice.  There’s nothing that can be done because it’s an imbalance of medications.  I’m in pain.  My doctor tells me I’m depressed because I’m in pain.  My therapist says I’m in pain because medication dose needs to be adjusted.  I don’t know which theory is correct because I started taking I currently use for depression as an off-label use for pain management.

I’m sick of hiding behind things that I think define who I am.  With my therapist’s help, I’ve accepted what I’ve done in the past does not define me or my future.  I am able to learn from my mistakes and learn from them.  I’ve also defined a few positive things to tell myself each day:  I will accept what I can’t change.  I have confidence in myself.  My mind will remain open.

I am worthy of being accepted for who I am.

Ever since I started journaling, just not as much today, I go back to reflect.  There are certain dates that stick out in my memory.

This paragraph is going to be sensitive.  I’m actually vulnerable writing about this because I don’t think I’ve ever been honest with the details; awkward, embarrassing details.  Half my high school years were spent in an alternative school where the majority, not all, of my peers would try to get me to do things I wasn’t interested in.  I remember one of the females gave me a condom “just in case.”  Just in case of what, exactly?  It wasn’t until after graduation I had seen a penis.  I had conversations with my then friends because I never really got “the talk” from either of my parents.  Within a few weeks, I didn’t understand what the big deal was so I ended up losing my virginity to someone I had just met on August 14, 2004.  There wasn’t much to it.  It wasn’t comfortable, but it wasn’t bad.  After that happened I met another guy.  And another.  And another.  There’s a double standard out there that it’s okay for men to have more than one partner but if a woman has more than one she’s often given a bad label.  I didn’t understand what the big deal was.  It was sex.  Sex that felt good.

April 6, 2005.  This is the date that really changed things for me.  This was the last time I engaged in sexual activity with someone who I wasn’t in a relationship with.  The story here is quite short.  I met a guy online and we met in a public place, and he being a gentleman takes me out for dinner first.  Once we’re in the middle of it, I take his arm and see he has a tattoo on his arm that wasn’t in any of the photos he shared with me.  I asked him about it.  Still in me, he tells me the truth, that his brother couldn’t make it so he went in his place.  I told him to stop and get off me and that misrepresenting himself was disrespectful.  I told him that I was leaving but he was begging me to let him finish because he drove three hours to see me.  I told him if he was honest with me from the beginning I would have been accepting, but not in the middle of the act.  I didn’t give in and somewhere along the line I lost the ability to stand up for myself in some situations. It was on the drive home I decided I was engaging in risky behavior that wasn’t for me.  The number of partners between August the year prior and that night I estimate to be between 30 and 50.  Years later I find out that I probably did this because I was undiagnosed bipolar and wasn’t receiving treatment.  For the record, I don’t think there’s anything wrong with random sex, or what I was doing, as long as it is done safely and is consensual (duh!).

On January 9, 2007.  I had an abortion 13 weeks LMP.  I remember blowing up one day since I didn’t tell anyone I was pregnant or that I had an abortion; my mom was very supportive once I told her about the decision I had been withholding.  I think we went to a one of those silent and don’t talk about it arrangements.  A few friends know.  I’m almost to the point where I’m ready to let my extended family know.  I’m not ashamed anymore.  I’m afraid, for them, for knowing.

August 25, 2007.  I was raped by the man I was dating at the time.  I was seeing a guy for a few weeks and on this occasion I was invited to have dinner with his parents.  (We had met informally when I picked him up for one of our first dates.)  After dinner the two of us went out for a walk and we watched TV and a movie.  One thing lead to another.  I wasn’t feeling comfortable and he wouldn’t get off me despite my begging.  To people who haven’t been in this situation, it’s easy to ask a survivor why they didn’t yell for help or use force against their attacker.  Those people are idiots.  After what seemed like hours, I told him it was getting late and that I should probably go home.  I went straight to the hospital.  I had an exam and was interviewed by the police.  I went home and spent some time with one of my friends who supported me through the ordeal, which lasted weeks.  During this time I lost faith in the criminal justice system and it wasn’t until I went back to school that I realized they were helping me but things didn’t work out in my favor.  Just recently the man who raped me showed up on Facebook as a suggested friend.  What the fuck.

February 22, 2016.  This is the last time I can say I genuinely felt manic.  Months after this date I was hospitalized (go read about it if you haven’t) and given a bipolar diagnosis.  I don’t know how to say it but I feel so bad right now and I want to feel like that again.  I had to pick up a prescription and while I was there I turned in my excess opiates.  Writing the past sentences has brought me to tears.  I’m sure rereading them will make me cry too.

These events don’t define who I am.  But they all have one thing associated with them.  Shame.  The shame of having a mental illness causing me to do things society sees as abnormal and engage in reckless behavior.  The shame of addiction and being stuck in its cycle.  The shame of having an abortion.  The shame of being raped.  I don’t advertise these things to people.  They’re a part of me but they don’t define me as a person.  Once I get over the shame I have for being diagnosed with a mental disorder, I know I will feel much better about myself.

Recently one of the people I’ve been talking to, “Spyder,” randomly told me about their mental illness.  “I’m here if you need to talk.”  That day was just a few days ago and they were supportive.  I then asked them if they could be my mental health “sponsor,” within limits.  They were more than happy to.  Sometimes I feel like the only people who understand what I’m going through are those who have gone through it themselves.  “Spyder” has a very similar story to mine.

There are five people I am completely honest and open with:  myself, my therapist, my psychiatrist, and two friends.  I haven’t told my friends lately, but I love them for being supportive and I’m sorry if I don’t seem appreciative.  “I love you.”

The majority of my depression lately is due to my father-in-law’s disease progression.  Things happened rather quickly, a phone call turned into a mad dash to pack and my spouse was on the next available flight to Minnesota.  I’m supporting my spouse as best as I can in physical absence.  One day his father seems to be fine; the next day not.  Most recently it seems his father has decided to stop all treatment.  Things are made difficult since I am not back home to support him, and we have yet to discuss when or if that will happen.

On to less serious things going on, my computer has been acting up and I’ve been researching my options for a few weeks.  I found I can build a rather nice computer for a decent price.  My case was first to arrive, along with the CPU and power supply.  My cooler and memory arrived last week.  Amazon said it had been delivered to the leasing office but they had no record of my package.  I called Amazon and they offered replacements.  My graphics card and motherboard were being shipped by New Egg.  I ordered these items (along with the case) on Sunday evening.  The case shipped straight away.  The remaining items, however, didn’t seem to ship until four business days later, suspiciously after I called customer support to ask them why they hadn’t been shipped.  If all goes well, I will have all my parts, recycling my external drive, HDD, and SSD, by the weekend.  (After writing this portion, my replacement memory arrived and the original package was found/never missing.  32GB for the price of 16GB, I will not be complaining!)

2-for-1 RAM
Leasing office error in your favor; collect free PC memory.

It has been five years since my thyroid has been removed.  My surgeon did a wonderful job.  I’m very pale and when I scar, I turn pink and the blemishes left behind take a while to go away.  I looked at this image and actually liked what I saw.  It’s what’s underneath that I hate.  It hurts to be honest but I hate myself.  I wish I was told I was beautiful more often.

5 years post-op thyroidectomy.
5 years post-op thyroidectomy scar is starting to fade away.

My mom has been keeping me updated with the search for her biological mother.  A lead came in for her biological father.  Many details in his obituary pointed to details matching her previously-suspected biological mother.  Not only may she have found her biological mother, she may have found her biological father!  My mom thought she was given up for adoption because she was the product of an affair.  DNA testing may now confirm otherwise.  I’m very anxious and excited for my mom.  She has been wanting to find out who her biological mother is for years, and it wasn’t until I had my DNA tested last year that she dove down that rabbit hole with me.

It Was a Pain, Literally

My major problem happened suddenly on December 31, 2017.  I left the apartment to pick up lunch.  When I made it down the stairs I was in some pain and thought it was something I could push through.  Once seated in my car, I knew something was definitely wrong.  I called the local emergency room and was talking with the triage nurse to get me pre-registered.  I was placed on a brief hold and was told I should call 911 due to my symptoms.  Not wanting to do that immediately, I called my mom who suggested it was probably for the best.  I called 911 and the dispatcher thought I had low blood glucose, which wasn’t the case.  My major complaint was hip pain.  By this time, the pain had gotten so bad that any movement made things worse.  I was taken to the crappy hospital, by my choice, which I won’t name.  The ride was horrific on my pain.  Every little bump in the road made me scream on the inside.  I was basically frozen in one position trying to prevent pain.

Once at the hospital, I was assigned to a room, which was still dirty.  There were blood droplets on the floor near the corner of the room.  The dirty sheets were removed from the gurney and replaced, so I know the room hadn’t been properly cleaned between patients.  I was asked to roll from one gurney to the other and it was painful.  I then asked if I was in a good position because I had no intention of moving unless absolutely necessary.  The doctor had to do a rectal exam to make sure I didn’t have an emergency situation with nerves, and then it was thought my pain was caused by a bladder infection.  The nurse asked me to use the restroom but I told her I wouldn’t be able to go and I just asked them to use a catheter.  This is where things got gross.  I wasn’t prepped properly before the catheter was inserted, so I worried about a possible infection.  (Thank goodness I didn’t get one.)  I used that opportunity to finish urinating into a bedpan.  The nurse said to call when finished, which I did, three times.  I was sitting on the bedpan for over an hour before I was assisted with the removal.  The nurse spilled urine onto the sheets, then poured the contents of the bedpan into the hand washing sink.  The nurse was able to change my sheets without me having to move much, but threw the used linens on the floor instead of putting them in the used linens bin.

So, as you can see, these safety and cleanliness issues made me doubt this hospital.  I’ll get back to that later.  Later in the evening I was told I didn’t have an infection so I had an MRI done (without contrast) and the doctor said I had a pinched nerve.  The MRI without contrast can’t distinguish between old scar tissue from my previous surgery and what is considered normal.

My mom arrived to help me during the first week of January.   During the second week of January I left the house for my second MRI with contrast so the doctor could get a better picture at what they were looking at.  The ride there was fine, but the minute I got out of the car and tried to walk to the clinic, I couldn’t.  I took a step or two and just kind of bent at my knees trying to gather strength for another two steps.  I was trying my hardest to be a “big girl” and not ask for a wheelchair.  A man and his son must have seen my mom and I in the parking lot because he comes out and gives me a wheelchair.  In my mind, I would rather put up with small steps than sitting.  The sitting hurt, and the minute I got inside I stood up and leaned on the check-in disk and apologized to the receptionist because I was literally in her face while I was in this position.  I then got as comfortable as I could and lied on a wide chair before having to get back into the wheelchair to be wheeled to the MRI.  There was a slight delay and I couldn’t take the pain of sitting so I had my mom push a bunch of chairs together and I lied on my stomach.  The technicians were worried about me.  They could clearly tell I was in pain and I said I would be fine during the scan because I get most comfort while lying down.

Just like the first scan, I was taking the noises I heard from the scanner and made my own music.  I think at some point I must have been audible since the technician broke in a few times to ask me if I was doing OK.  Yes, I was doing great!  I didn’t want time to pass because I was surprisingly comfortable during the scan.  Since that visit, each day I had to leave the house, I had a mindset of, “Just think!  One less visit that needed to be done and I will be good as new before I know it.”

If only I knew it was going to be that easy.

A week after the second MRI scan, I had a follow-up to discuss the results.  I called the clinic and told them I was in so much pain that I couldn’t make the visit and asked if they could do the consult over the phone.  The PA-C was helpful and told me the next step would be to meet with the surgeon to discuss treatment.  That appointment was made for the third week in January.  I met with the surgeon, just to be told to meet with a different surgeon and to get an epidural steroid injection that my insurance would require before surgery would be considered for coverage.  I was upset that I had to meet with the surgeon just to have to meet with another one down the road.  I had my spinal epidural performed in early February.  Surprise!  It didn’t work.  The two I had years prior never worked, the second of which made things worse.

It’s now February 16 and I’m meeting with the surgeon.  He says I will make a great candidate for surgery, albeit higher risk due to obesity, and that surgery should help me immensely.  Great!  Surgery is scheduled for late February.  During my pre-op physical, the anesthesiologist didn’t have any concerns.  However, later that day, I got a call from my surgeon saying my A1C was too high and that I would have to visit my endocrinologist to get that number to an unrealistic number before surgery could be performed.  I met with my endocrinologist, which my mom also wanted to confirm as being a bitch, yelled at me for being out of control and blah, blah blah.  Let me just say that when you don’t have anything to live for, you don’t take care of yourself.  I mean really.  Things were awful.  Lowest of the low.  If I were able bodied I would have definitely checked myself into the behavioral health hospital.  I give my insulin four weeks to make things better, get another pre-op physical, and make extra clear that I don’t want another repeat of last time.  Again, I was reassured that things looked fine and there didn’t seem any reason why I wouldn’t be able to have surgery.  Unfortunately, that visit had me extremely pissed off.  My mom drove me 40 minutes to the hospital, just to have a nose swab performed.

March 29, surgery day has arrived.  I get to the hospital, am checked in, put into a gown, compression stockings, back prepped and ready to go.  Then the anesthesiologist asked me questions and her body language seemed off.  After she left the room, I started to cry and said to my mom, “I thought she was going to say no.”  A few minutes later, the surgeon comes in and says he can’t do surgery because I could die.  I wanted to tell him I didn’t care because I had absolutely no life and was living 23 hours and 50 minutes of each day in bed.  The surgeon, using his special words, suggested I get “that other surgery” because it would help me in the long term.  He was referring to bariatric surgery.  He told me I needed to get up and move around more.  I told him the pain was so bad that I couldn’t do anything.  He told me that I should hop around on my one good leg because my pinched nerve was “just a pinched nerve”  and that I shouldn’t be having so many symptoms with it.  “100 years ago people with this pain would have had to live with it.”  That’s great, but this isn’t 100 years ago and medicine has advanced.

I was furious.  When my mom and I got home, she called the hospital on my behalf because she was worried about the quality of care I received.  Mainly the fact that it was expected I may have had a pulmonary embolism and the hospital let me walk out the door.  Later that day I called a different clinic and had my second opinion scheduled for two weeks later.  The following Monday, I called the surgeon to ask what needed to be done so I could have surgery performed and I was told the surgeon didn’t think I was a good candidate and didn’t think the surgery would help me at all.  I was effectively dismissed from the clinic with a referral to a pain specialist.  I should make note that at this time, I was taking 10mg hydrocodone every four hours like clockwork.  On Thursday that week, I had an ultrasound scheduled to check for blood clots in my legs, which none were found.

Second opinion day arrived and the new surgeon was like, sure, yeah, I will do surgery.  I made it clear that under normal circumstances I wouldn’t jump at surgery, but I had run out of options.  I needed a pre-op along with clearance from my primary care physician.  I made a visit with my primary care doctor a week later and she referred me to my pulmonologist.  She said if my pulmonologist thought I was clear for surgery, she would OK me too.  The pre-op at the hospital was one of the worst experiences in my life.  Remember my emergency visit?  Same hospital.  I was worried then, I was worried now, and I was certainly worried for the future!  I politely asked for a gurney and the nurse said, “No, you don’t want one of those, it won’t be as comfortable.”  I was screaming pain in my head because I was given a crappy chair in which only the legs would go flat.  So here I am, curled up in a ball at the bottom of a chair, in extreme pain.  The visit lasted about four hours.  After the visit I had to go to radiology.  Again, I’d rather walk than sit, so the walk was very, very long.

But I made it!  “One more visit,” I thought to myself.  The visit to my pulmonologist would be my last time leaving the house before surgery and I was very, very thankful.  Unfortunately, that visit was almost ruined by bad information given to me by the scheduling staff.  I had to have an x-ray of my chest performed before my visit upstairs.  What I wasn’t told is that even though I had an “appointment” for an x-ray, due to it being in an urgent care clinic, it was first come, first served.  I was nearly 30 minutes late for my pulmonology appointment.  My mom was my advocate, letting them know that this visit was absolutely necessary to my well-being.  Thankfully disasters were avoided and my pulmonologist cleared me for surgery in the sense that I would still be higher risk, but nothing too extreme should happen to me.  I then called my primary care doctor to let her know to contact my surgeon that everything was great and I would be ready to go.

I had my nerve decompression surgery on April 27.  Initially worried, the staff I interacted with that day were friendly and professional.  I guess that’s a good reason to be the first patients of the day?  I get a clean hospital environment, a clear-headed surgeon and PA-C, and friendly nurses.  I woke up after surgery and was initially combative.  I remember the nurses holding me down and telling me I was out of surgery.  I then remember having to cough a whole hell of a lot and the nurse was there every second with gauze so I could spit into it.  I remember being wheeled to recovery and my mom turned the TV on to “Let’s Make a Deal.”  The nurse said I had to be able to urinate before I’d be able to go home.  I was scared of the pain.  Finally my body gave in and told me I couldn’t hold it in any longer, so I called the nurse and she helped me to the edge of the bed.  I started to cry because I was sitting for the first time in nearly five moths without pain.  I then stood up and cried more.  Happy tears.  I used the bathroom and needed assistance with wiping and getting up, but I could walk and wash my hands on my own.  I was crying.  I was finally free of pain and felt happy for the first time in months.  I’m crying as I write this because with all the setbacks I’ve had this year, I honestly didn’t know if the day would ever come.

I’m very thankful.

One day post-op.
One day post-op.
One week post-op.
One week post-op.
Two weeks post-op.
Two weeks post-op.
Three weeks post-op.
Three weeks post-op.

I’m now nearing four weeks of recovery.  I’m hoping my surgeon can clear some restrictions for me during my follow-up on Thursday.  Under the guidance of my therapist, I have filed a complaint against my former surgeon for quality of care and delayment of treatment.

What’s next for me?  Hopefully a happier, newly-improved me!

State Fair 2017; Other Updates

Better late than never?  I was able to snag a cheap flight home at the last minute, just three days before the state fair ended.  I arrived on Friday (August 28) morning, had a day of rest, and my mom and I went to the fair on Saturday (August 29).

French Toast Bites – whipped cream, strawberries, pop rocks.
Mini Cinni Smiths, an almost bite-size caramel roll.
Deep fried avocado! Delicious with a bit of spice!

Mom also bought a bucket of Sweet Martha’s cookies.  The cookies taste best fresh.  Wouldn’t you know?  They were all gone before I had a chance to freeze some and bring them back home.  Mom and I spent the majority of the morning at the fair and returned home around 2 PM.  Mom said she wouldn’t have stayed much longer than we did because it was getting a bit busy, even for her.  “Old” me would have freaked out over the amount of people and I think that is a great sign that my medications are working properly.

Miss Lilli was being her usual self.  The amount of time that passed since I last saw her wasn’t as long as previous times so she was happy to see me.  You do not want this little girl to be mad at you.  She will make your life much worse than these pictures document: photo bombing a selfie; walking on your snacks; and hogging the work area.

I’m sorry, were you trying to take a selfie?
I’m sorry, were you going to eat those?
Need your mouse and keyboard? Too bad!

Mom would have bought me a plane ticket to visit anyway.  Hurricane Irma had been predicted to move straight through Florida and up into the Carolinas.  I would have been too busy to let Mom know that I would be safe, but being the only child, spoiled, and everything that goes with it …

I had a follow-up MRI scheduled for the day after I returned home.  I received a call the day before saying my insurance declined to cover it.  At the time I was upset and my medical team was ??? with communication about the next step.  Later that day I get a call from rehabilitation to make an initial consultation appointment.  Although confused, I made the appointment.  I put two and two together, logged into the patient portal and read that I need six consecutive weeks of physical therapy  (PT) before insurance will consider covering the MRI.  I had my initial consultation two weeks ago and this week will be the first week of PT.  I wish the process could be moved along more quickly because there’s something about maxing out benefits for the year and taking advantage of the system.  I met my maximum in the spring when I was hospitalized in may for DKA.  I was hoping it was going to be a quick in/out but I was there for at least five nights.  By the time I was discharged, I wanted to wear long sleeves.  I ended up blowing all my IVs resulting in unsightly bruises.    My mom will be visiting in November.  This will make a “record year” of family visits since I’ve moved down here.  I think it is helpful for my mental health.  I know after February, April, and September I felt renewed.  I’m expecting no less for November.