My Hips Don’t Lie – My Story with AVN

No, seriously….It’s been 147 days since I have been able to enjoy life. Today, I’m getting my left hip replaced due to Avascular Necrosis (AVN) returning and my hip collapsing.

Let’s rewind a little bit on how this horrible adventure began….

 

 

I started having low back pain and my chiropractor suggested an MRI. The results of the MRI showed Spondylolisthesis at L5 – which basically means my vertebrae is hanging on the edge. I went to an ortho to get an opinion and he put me in PT and also got me in to see a pain specialist.

After PT, I was still having low back pain. My pain specialist then did six procedures on me in the summer of 2016 to burn the nerves in my back (they do two test shots to make sure they are in the right area and then proceed with the burning of the nerves). This was done for both sides of my lower back. It actually worked for quite awhile. I was living my life, traveling – having a good ole time.

After a long flight from Hawaii, I started having achy pain on the top of my right thigh that stopped above my knee. I would take my dog on his daily 128 mile walk (OK, 5 miles, same thing) and noticed the pain would kick-in my thigh/groin area about 5 minutes into my walk. It wasn’t unbearable, but I knew something wasn’t right. In my head,  I was thinking the pain was just from sitting on airplanes because I had traveled quite a bit in the recent months. My pain specialist gave me an epidural in January 2017 and that made it flare up horribly! We both determined it was time to start getting opinions on having my back fused. This is where shit gets crazy.

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My first back opinion appointment was February 2017. My family knew this doctor and he had done surgery on my dad, so I was hoping for an honest answer. After x-rays and about a three hour wait, I finally got called back. His lovely PA came in and said right away a fusion was needed but he wanted an MRI of my hip. After telling me he would open me in the front and do some work, then flip me over and do additional work, I about lost it – mind you, this is still the PA talking. The actual surgeon comes in and tells me he would not open me in the front and never would and that he may need to fuse me in two places. Now, if you and your damn PA can’t agree to something or at least chat with each other before talking to a patient so you don’t sound like complete morons, you should probably get a new PA and work on your communication skills. He also said to get an MRI of my right hip – I agreed to it and the following week I got the MRI done. I never went back to this doctor after the four hour appointment and the insanity of it all. I figured I would have my pain doctor review the MRI or another back/hip doctor.

After I got my MRI done, I had a follow-up with my pain specialist. He looked over the MRI and said to take it to my next back opinion because he wanted to see what he said about my hip. A few days later, I had my second back opinion. I gave him the MRI of my hip and he said, “I’m not going to focus on your back, you need your hip fixed asap – but you do need your back fused”. Oh, OK…FML!! After finding out my right hip had AVN, they had me come in the next day to see another doctor…that doctor turned out to be an old high school friend, who did not want to operate due to the friendship so he referred me to his coworker who handles AVN. Understood.

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This new hip doctor confirmed the AVN and by then, my left hip started having groin pain. What is AVN, you ask? Here’s a brief description:

Avascular necrosis is the death of bone tissue due to a lack of blood supply. Also called osteonecrosis, avascular necrosis can lead to tiny breaks in the bone and the bone’s eventual collapse. The blood flow to a section of bone can be interrupted if the bone is fractured or the joint becomes dislocated. Avascular necrosis is also associated with long-term use of high-dose steroid medications and excessive alcohol intake. Anyone can be affected by avascular necrosis. However, it’s most common in people between the ages of 30 and 60. Because of this relatively young age range, avascular necrosis can have significant long-term consequences. (Mayo Clinic)

Now, you are probably wondering how much I drink or if I do steroids or have I had trauma to my hips. Rarely, NO & NO. I even called my primary doctor to see how many steroid packs I have had since I’ve been seeing her and the total was 2 – TWO!! After doing massive research, two packs will more than likely not cause this – you need to be doing heavy steroids, be an alcoholic (which I should be after all of this). One of the doctors did claim that one steroid pill can cause AVN. Two of the doctors claimed this was due to  “environmental issues”.

So, why would a healthy 32 year old all of a sudden feel like a 90 year old and can barely make it around the block? It’s incredibly hard to pinpoint the source of what causes this nasty disease – but keep in mind, there is a huge health concern at Bayshore High School here in Bradenton, FL. Sudents are dying of extremely rare cases of cancer and being diagnosed with autoimmune diseases. Is this the problem? My brother is one of those statistics. He died of Ewing’s Sarcoma (VERY RARE) – 2 cases have shown up at Bayshore High and 2 within the Bayshore Gardens area. If you are unfamiliar with the fight of the students, family, etc. trying to get more information on the dump site (Riverside Products) and the wells at Bayshore High, I advise you to become informed. Now the media states this refers to the old high school, but many of us marched, practiced and were on those grounds of the old school. The other concern – where is the water coming from that is going to the new school? My brother attended the old school and I attended the new school. Check out the links below to read more on it. Ricky Speed is my brother who lost his battle in 1997.

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Anyway – back to my hip mess – the hip doctors recommendation was to do a core decompression – which means drill a hole up to my femoral head and scrape the dead bone out. He would then inject it with bone graft/stem cells to promote blood flow again. Sounds pleasant…My right hip core decompression was March 30th (Should’ve been March 29th if the damn drill showed up)…I healed pretty quickly from this. I was at my friends wedding about a week and a half later. The doctor was surprised how fast I was up. I was up walking immediately after surgery and he did not have me do PT. I was on a walker for a few days, then moved to a cane. I had about 15 staples, which looked like Frankenstein. During my recovery, I got an MRI of my left hip, which showed AVN as well. I proceeded with the core decompression on the left side on April 19th.

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After my left hip, I was in horrible pain. I used a walker and would transition to a cane sometimes. The pain became so unbearable a few weeks after surgery, I had to call my doctor over the weekend. I went in the following day to have x-rays and they turned out clean. He claimed I just needed to take it easy and also upped my pain meds….I hate taking pills!! About a week and a half later, I went back to work. I still didn’t feel 100% My second week back at work, I had to start using a cane and I was dragging. Something was wrong with my left hip. I couldn’t lift my leg up normally. It felt like a ton of bricks and walking up an incline seemed like Mt. Everest. I was about to leave on a trip the beginning of June and I called my doctor to see if this pain was normal. He ordered an MRI and called the next day with results. He said my bone was inflamed and I needed to be on bed rest because he was afraid the other hip would eventually have the same problem. He said to take it day by day and it could last about a month. AGAIN – FML – Vacation was cancelled!!

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On June 3rd, I started my “bed rest” – bleh. Luckily, I was able to work from home so I didn’t go too stir crazy.  I had a follow-up with my surgeon after bed rest for 2 weeks and he said to give it more time – HOW MUCH FREAKING TIME!!? The pain did not subside at all. I had my OK days and I had terrible days. I even tried Cryotherapy!!

I didn’t know if my hip was going to give out and a few times it did. It felt like my hip was out of place. Picture a chicken wing and you pulling it apart  – literally what I felt like. I could usually handle mornings well, but around noon I had to lay down or take a pain pill. I can’t count the nights I cried myself to sleep or had panic attacks because of the amount of pain I was in. There were times I just wanted to die – seriously. People say that loosely, but this was just horrible. I can’t image how my brother went through cancer or anyone else with a disease/disability. This set me back not only physically, but emotionally. Depression kicked in…I was in a horrible place.

I trusted my surgeon up until the point he said I needed to, “Granny it up” and “Wait it out”. I wasn’t expecting to walk out of surgery and be ready to run a marathon, but I also wasn’t expecting to be worse. I waited until the end of June and sent an email to my good friend who is an amazing Physical Therapist (if you need one in Sarasota – let me know!). He called me the next day and said sometimes it does take awhile for the pain but what I was going through just didn’t seem right. He gave me the name of a hip doctor and said to try and get in to see him. He was supposed to be the best….we’ve all heard that, haven’t we?

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I gave this new “amazing” hip doctor a call. They got me in the following week to see a PA. She requested blood work to be done to see if there was an infection. The right-hand man came in as well, who was another PA, and we chatted for quite a bit and he said sometimes this just doesn’t work and we have to replace your hip but we will do everything we can. I went and had blood work immediately. My levels came back high (inflammation) so they requested a hip aspiration to see if the joint was infected and they were concerned with the amount of fluid present on the MRI – something the original surgeon never mentioned to me. In case you’re wondering how that went, watch below…

So that shit was awesome. The results came back with no infection found. This time, I finally met the actual hip surgeon – turns out – HE IS AMAZING!! My appointments were very thorough and not only did the PA’s spend a ton of time with me, the surgeon did as well. He explained the hip aspiration was negative, which is good news because if this shit was infected, he’d have to go in and clean out my joint, place a spacer in and I would have to have an IV for 6 weeks to get antibiotics – THEN he could replace my hip. He asked for one more MRI of both of my hips and to add contrast to see if it’s an infection or AVN – he just wanted to do his due diligence – I understood. A joint infection is different than if the bone is infected (where the procedure was done). Thats is what the doctor wanted to rule out.

MRI was done and the results – AVN is present in both hips (again) and my hips are starting to collapse – but no infection. Yasss!!! and Shit. I know what this means, hip replacement. Now I have to get into the mindset of going through surgery again and praying the outcome is not what I had before. I had to have faith and it was hard for me to believe that everything was going to be OK. It’s been wrong for five months. Is this how my life is going to be forever – chronic pain and end up on disability? I mean, shit, my dog hates me right now because we can’t go on our adventures.

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My pre-op appointment was August 3rd. We went over everything there could possibly be. We talked about skydiving, snowboarding, taking a picture of my sawed off hip bone, videoing the surgery, etc. This doctor gave me faith that it will be OK –  and that he will have me back to my regular non-sense in no time. I just have a small hiccup in life. He has to replace both, but not at the same time – Thank you baby Jesus. In the mean time, I had to buy ridiculously tight bicycle shorts, get a DVT Pump, get cleared for surgery and have a million tests done. Oh, did I mention the surgery is outpatient? Amazing!! My PT will come 3-4 times a week for 2 weeks and then at my follow-up, my surgeon will more than likely release me back to work and I can do PT on my own. I will be having an Anterior Hip Replacement. This isn’t like years ago where they make a huge incision and cut through your muscle. It’ll be on the side of my thigh and they will be able to move the muscle out of the way, so it is a quicker recovery time. ūüôā Yay all around!

Today, right now as you’re reading this, they are sawing off my hip. I’m loving it because I’m completely knocked out and in a whole different world of anesthesia. Here’s hoping I can drop it like it’s hot (without dislocating my hip) and back to my normal self again. CHEERS!

I wrote this not only to tell my story, but when they first told me I had AVN, I had no idea what it was. I didn’t know how serious this would turn out. If you search AVN, there are a few websites with a description, but you don’t find many sites where people tell their story. That’s what I needed. This is such a rare bone disease and it needs to be more known and researched. It’s the most painful thing I have ever gone through in my life and I’ve been through hell and back. If you’re wondering if I saw the original surgeon again, no I didn’t. I lost complete trust in him and his team. When that happens, you know something bad is bound to happen. My advice is, when you think something is wrong, say it. If you persist and a doctor still doesn’t listen, get another opinion. YOU know your own body. This is my story of my struggle and my fight with AVN.

If you’d like to know the physicians names, please contact me – I didn’t want to embarrass them…although, I should have. ūüôā

I will keep everyone updated on my progress. Add me on Snapchat (localcelebr1ty) or Instagram (localcelebr1ty) to watch ridiculous videos of my recovery. If you have any questions about the procedures or anything at all, leave a comment! 

Remembering That You Are Going To Die Is The Best Way I Know To Avoid The Trap of Thinking You Have Something To Lose.

Today is a hard day for two reasons:
1. I’m having my third knee surgery in 6 months today.
2. Today has been 15 years since my brother (Ricky) passed away from cancer.

Many don’t know the story of my brother or didn’t even know I had a brother. It was hard for someone my age to be asked, “So do you have siblings”. Umm yes, no, well I used to. I always said no when I was younger, but I now always say that I lost my brother to cancer. I don’t want sympathy, but I don’t want people to think I didn’t have the blessing of knowing/having a brother. There are only a handful that may remember because they went to school with me and the whole 6th grade class was told what was going on.

Ricky and I were like normal siblings – It’s a love hate relationship; don’t touch me, you never talk to me, why are you ignoring me, why won’t you let me hang out with you, you’re so cool cause you’re older, etc. My brother was¬†adventurous and pretty laid back. He enjoyed being outside and being with friends. He also ate the weirdest foods…I’m pretty sure he did it to gross me out.¬†When we lived in Indiana we always went running into the huge corn field behind our house, sledding, four wheeling, fishing, playing video games or riding our bikes. Probably the biggest memory I have is singing¬†karaoke with him. He would always sing New Kids on the Block – haha! I have proof!

He loved music, the screaming rock kind…For some reason that didn’t pass over to me, thank God. Ricky went to my Girl Scout Graduation. It made me so happy he was there. I followed him around all of the time…to the point of annoyance, which started the bickering. I even followed him up mountains and caves 0_O.

Rewind 16 years ago…I was 11 years old, so bare with me.

It was spring of 1996¬†– He was having pain in his left shoulder. My parents took him to the ER, but I didn’t go. I think it was the next day or not too long after that, Ricky came into my room and said he had cancer. Ewing’s Sarcoma, to be exact. Ewing’s Sarcoma is a very rare bone cancer and very aggressive. He asked me if I knew what cancer was and I said, “Yeah, that’s when your cells are all messed up, right?”. I was close! It became a big blur of the hospital, the Ronald McDonald house, washing your hands non-stop and staying with my Grandmother a lot after that.

They decided to do treatment at Shands Hospital in Gainesville, FL, which is 3 hours away.. (Home of the Gators). Radiation was quite interesting – it was like having blue tattoos everywhere. Chemo was also done and the top of his knee got burned because some of the chemo spilled on him. I didn’t know much of what was happening, just that he was sick and he had to stay at the hospital for a long time. I thought the Ronald McDonald house was so cool. It had a pirate ship out in the back to play on and the place had plenty to keep you busy.¬†I also stayed home with my Grandma, who lived nearby, so I could keep going to school. My parents and brother seemed to be gone forever at a time. Then it was just my mom and brother who were gone.

Fall was right around the corner and Ricky had to get a bone marrow transplant. After the transplant, things became very strict on what he could be around and what he couldn’t. I remember him wearing his hospital mask at times. One night we ordered pizza and I doubled dipped into the sauce and he yelled at me because he couldn’t have any after that. Opps…

My birthday was next and we were deciding how to have a party since my brother couldn’t be around so many people. We decided to have it at the skating rink – Oh the 90s! During the party, a girl fell in front of me and I was going too fast to move out of the way and I went flying. My friend Jill fell on top of my left arm and guess what? It broke. By that age, I had broken my leg once, my right arm twice and my left arm three times. Habits are hard to break, but bones aren’t. I went to my mom who asked me if I could unbutton my pants – I had broken my arm so many times, she knew this would tell her if it was broken. I couldn’t twist it and the workers got me ice. I finished out the party with a bang by entering into the skating race. After the party, we made our way to our second home, Blake Hospital, to get an x-ray. It was broke and I was put into a sling and casted shortly afterwards.

The next few months I can remember like no one else.

My family left for Gainesville one day and the neighbors watched me until they got home that night. My mom sat me on the couch and told me there was nothing more they can do for Ricky and he would die from the cancer. None of the treatment worked. Being so young, I didn’t really react. I just said, “Oh.” No one close to me had died before. I didn’t comprehend what was going to happen. I went to school the next day and told some of my friends and they had the same reaction. Life went on normally after that. Christmas was right around the corner and my mom had always wanted a dachshund, so Ricky decided to get one for ¬†her ¬†for Christmas. My dad, Ricky and I went to go look at the mini dachshund he was going to get her. I was still in a sling from getting crazy at the skating rink and we put the puppy in my sling while she slept. I then said, “She is the size of a twinkie!”. Therefore, her name became Twinkie. We picked up Twinkie a few days later and Ricky placed her in a picnic basket and gave it to her right before Christmas.

After Christmas, it went downhill pretty fast. We tried to keep busy and not be stuck in the house depressed about the situation. Ricky had to start using a wheel chair because of the pain. We went to the Cortez Fishing Festival to walk around and get him out of the house one weekend.¬†¬†His friends would came over to keep him company and give my mom a break. It was harder on family and friends to visit because you don’t know what to say sometimes and you didn’t know if he wanted you there or wanted to rest, etc. It’s not like the movies. You just do the best you can do.

Ricky had a wish to meet Dennis Rodman (Chicago Bulls), but after his stent of wearing a wedding dress, Ricky said no thanks! The Make-A-Wish Foundation worked out a trip so we could go to Chicago and see family and friends in Indiana and go to a Bulls game. It was mid-Feb and I was in math class РMrs. Harwood to be exact, and a message came for me to go to the front of the office. Mrs. Harwood looked at me and she knew what it was for; it meant the Make-A-Wish trip was now! I packed my backpack and headed out. When we got home my mom said she had packed my bags already (she forgot my underwear, thanks mom) and a limo would be at the house shortly. Everyone was quite excited to get away and see some family and friends back in Indiana. The people from MAW were so nice. We headed to Sarasota Airport and boarded the flight. We arrived in Chicago about 8pm and checked into the Marriott Hotel. The hotel was amazing!

The next day we went to the Chicago Bulls practice before their game with the Charlotte Hornets. Ricky got his photo with the cheerleaders -he turned red.

We went back to the entry of the locker room for the Bulls. I didn’t know what to expect or who we were meeting at all. I’ve always been a huge sports fan though! Scottie Pippen then came out of the locker room – the most down to earth guy in the world! He gave Ricky a Chicago Bulls bag with goodies and signed a pair of his own shoes, hats, towels, anything basically. We then took photos with Scottie and headed to our seats for the game.

Ricky fell ill near the end of the game, so we left early to the hotel. Our family and friends got to attend a Dave and Busters night with us as well. Our last day, we went back to Indiana to visit more family and friends. Everyone knew this would be the last time they’d see Ricky, but never said a word about it and didn’t act differently at all. It was nice to have a normal evening with everyone.

We flew back to Florida and I went back to school. Spring Break was right around the corner and I was excited to spend it with friends and get out of the house. Ricky started to get worse with pain and barely eating. The news channel came to our house to interview Ricky one day. He mostly stayed in his room in bed. There were times in the middle of the night I’d hear him awake and I’d go check on him. One night we stayed up real late watching t.v. Ricky had never talked about him being sick or what was going to happen. He then asked me that night what I thought about all of this happening. I just said it’s sad and I don’t want to think about it. They ended up moving his bed to the living room and Hospice started coming in to give him shots and to check on him. The Hospice nurse ended up being my friend Jesse’s mom.

Spring Break started and I spent my days playing basketball or riding my bike with friends around town – the normal kid stuff. My parents told me one night that my hamster had died – I had a million hamsters when I was little; some were quite crazy and¬†adventurous. Pastor Steve came over that same night my hamster died and we sat down at the dinner table with him and he said, “You need to tell Ricky goodbye.” He thought maybe Ricky was hanging on because we weren’t telling him it was Ok to go…I never told him it was ok to go.

Friday, April 4th –¬†I was heading out the door that morning to the Fire Station where they had most of the spring break kids in the area hanging out to play games. When I walked passed Ricky’s bed, he asked me to take his socks off, so I did. I told him bye and I’d see him later. I left for the day and came home close to dinner time. I sat down on the couch to watch some t.v. – right across from Ricky’s bed. Twinkie went running into my room and wouldn’t come out from underneath the bed. My parents went into their bedroom. I turned on Home Improvement-I was in love with JTT and had his photos all over my bedroom wall – don’t judge.¬†It was the episode where JTT might have thyroid cancer. Ricky and I talked and laughed about some stuff because our mom started having thyroid issues when I was born – I’m such a pain!

April 4th, 7pm – My mom came out to check on Ricky. I was still sitting on the couch watching tv. Another episode of Home Improvement was about to come on. I watched my mom lean over and say, “Ricky”. He didn’t make a sound. I knew it had happened, but for some reason I just sat there calm and watched her. She said his name again, still nothing. She then yelled for my dad and said, “It’s happened”. She was crying and screaming. I still couldn’t move. A neighbor came over and took me into my parents room. I can’t remember if I was crying or not. The neighbor insisted we play a game to keep my mind off of everything. I walked out into the living as they were wheeling Ricky’s body out. I ended up staying at my grandmothers that night, who lived down the road. I hated being away from my mom. I knew she was heartbroken and I just wanted to help her and make it all better.

My Grandma and I stayed up all night. We laid in her bed and I just asked her questions. I asked her if Ricky was watching now and she said I promise you he is. I told her I just want him to watch mom. I went home the next day and arrangements were being made for family to come in. The funeral was set for Tuesday. Aunt Shelly and Uncle Robby from Colorado flew in and so did my Aunt Sharon from Texas. My mom came into my room one night and said that Ricky would be in a casket at the church and we’d be able to see him and it would be ok.

Tuesday, April 8th – I got dressed for the funeral and went to go get Aunt Shelly and Uncle Robby. Uncle Robby drove us to the church. My Grandma and Aunt Sharon drove¬†separately. My mom, dad and I sat in the back of the car. I wasn’t sad; I was nervous. I didn’t know what to expect. This was the first funeral I had ever been to. We got into the turn lane to pull into the church and I saw the hearse parked out front. Uncle Robby stopped the car right next to the hearse so we could get out. When we got to the entrance of the church, a couple of men from the funeral home asked my parents if we wanted some alone time first. They insisted we go in first for a little bit then the rest of the family and friends will come in after we are done. I remember looking into the church and I could see the casket, but not Ricky.

We walked down the aisle of the church and it finally hit me, Ricky was gone. I didn’t want to walk any further. We got up to his casket and I just cried my eyes out. I tried so hard to hold it in. My mom gave me a yellow rose to put on him. Ricky gave my mom yellow roses when I was born. I felt like I was going to fall on my knees and pass out. Family and friends then came in and Aunt Shelly sat next to me. I couldn’t stop crying. I remember not wanting to look at anyone – all I could focus on was Ricky laying in front of us. A couple of my teachers came to the service and gave me a stack of cards that my entire 6th grade class had made me. I read some of them while I was sitting there. I still have them in a box to this day. The funeral seemed to last forever. I couldn’t pay attention to what Pastor Steve said at all because I was just watching Ricky. Alabama’s “Angels Amoung Us” was played and so was Kevin Sharp’s “Nobody Knows”. Kevin Sharp sent Ricky an autograph photo and even had the same type of cancer as Ricky. The funeral was about to end and the Pastor gave Ricky’s last words to us. I remember him saying something to Chucke, who was Ricky’s best friend. Pastor Steve then said my name, but I couldn’t focus. All I remember is something about staying in school and going to college – btw – Check!¬†Ricky wanted my mom to know he loved her so much and he wished he could take her with him. That is when I started to sob.

The funeral director asked if we wanted to leave the casket opened after service and my parents said to close it. Deep down I didn’t want that. I knew that would be it. They moved the casket to the hearse and we walked out of the church.

It was over – just like that. It was the fastest year of my life. He died a month before his birthday. The cancer got him in less than a year. I didn’t understand a lot of it when I was little, but ¬†as I got older I became more interested medicine. When I went college I started to volunteer for organizations who help with families that go through this – Give Kids the World at Disney, Ronald McDonald House, and the Make-A-Wish Foundation. Working with these groups helped me overcome the sadness I felt. I didn’t hate God. I just didn’t understand why.

Everyday I wonder what Ricky would be doing now. Would he be married, have kids, live in Florida still, what if he never had cancer? Then I wonder would I still be in Florida, would I have become a volunteer, would I have helped other families going through the same thing we did? I probably would because I love helping people, but I wouldn’t have the personal experience that others don’t.

There is no doubt I miss Ricky. I miss the trips we went on when we were little, the bike rides, racing each other, him helping me, picking on me, and being the annoying brother he was. He will always be a part of me and I will never ever forget the memories we made. Thank you for making me a strong willed person today and showing me what it means to live life to the fullest.

RIP Ricky…I love you and I miss you so dang much.

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This was just a short summary of what happened in my life in 1996-1997. I left a lot out that I’d like to keep to myself because believe it or not, I’m a private person. For those of you who have gone through something similar, stay strong. It never gets easier like they say.