Hurt

Most people know that I tore my ACL and that lead to a blood clot in my left leg and that led to a bi-lateral pulmonary embolism (clots in both lungs). 

I saw a specialist and he said no pregnancies for two years at least. He also said that if I were to get pregnant that I would to be on Lovenox (blood thinner shots in my belly) twice a day the entire pregnancy, I would be on bed rest and I would be high risk and I would likely develop clots again. 

Clots that could kill me and take me away from my family.

My son, Johnny, is very active. He needs constant stimulation or he gets bored and into trouble. I always wanted him to have a sibling close to his age to help entertain him. Now I am realizing that this is not a possibility. Not just because it will be "hard". It will be too risky. I could die. It is too much to put my family through.

Oh, side note... My uterus and bladder are "falling". I have chronic pain and these organs are slipping down and there is nothing I can do to stop them from coming through my pelvic floor. Yet another reason I can't sustain another pregnancy. I am going to see a urogynocologist about a hysterectomy in the coming weeks.

I can't believe it. It makes me sick. I am so angry and sad that this is happening to my body and I didn't choose this. Some horrible Doctor cut me almost three years ago, I am still having problems and surgeries and now I can't have any more children. I don't know where this blog post is going except that I needed a place to write my feelings down because they were eating a hole in my soul and they had to go somewhere. So I am sharing them with the world. Eventually I will find meaning in this situation and peace with it all but right now I am just pissed and resentful. 

Fog

It has been a long time since I have written on this blog. I'm not sure if it is because my recovery has been going well or because I have been so wrapped up in learning about my newfound religion or because I have been chasing a 20 month going on 5 year old around the house day after day.

Whatever the reason is, today I felt the need to write. 

Back in February, I had a pretty quick and easy recovery from surgery. The pain was minimal and the botox was a GODSEND. For the first time in what seemed like years, I was virtually pain free. I still had to work up stamina because I was pretty out of shape, but I could enjoy normal things like NORMAL people. I felt NORMAL! I found beauty and excitement in everything. I fell in love with living. I could go to the gym, I could grocery shop, I could enjoy intimacy with my husband, with little to NO PAIN! 

Then June happened. Oh, June. 

I started to see a fog clouding everything; this fog is called pain.

When a person has chronic pain everything in their life is hard to manage. It is as if the pain is an extra limb or a Siamese twin attached that is only in the way, never helpful, only there to make things difficult.

Given my history of  PTSD, depression and anxiety, after experiencing pain free living for months and the joy that comes with it, everything seemed to spiral out of my control. My mood would swing out of control and I would cry because of the dumbest things. I seemed to have 'accidents' more often, for example; I stood up under a floating shelf in my son's bedroom and hit my head so hard that I had to go to the ER twice (once by ambulance) because of dizziness, fainting and abnormal head pain, and was finally diagnosed with a concussion.

My pelvic floor pain is always in the background. It is there because the band of tissue that was cut and stretched so many times is in a wad of knots. You know that kind, when your shoulders hurt really bad because of knots and a massage 'helps' but makes you sore after? These knots are harder to massage. I have a "dilater" that looks like a... what did my dad call it? I can't remember, but he definitely didn't say DILDO. That's what it looks like. Anyway, I use this device to stretch the band of tissue around the opening of the vagina to help loosen the muscles and the knots. 

The problem is, the botox has worn off. 

The knots are so painful and stretching them only results in more intense pain that lasts for days. It feels like I have a big bruise that someone is always pressing on. Walking doesn't help. It is really clouding everything around me.

As a distraction, I have started to make jewelry. Lots and lots of jewelry. I even opened my own little etsy shop and make custom things for people! 

In closing, I would like to give a shout out to the pharmaceutical companies for creating muscle relaxers and anti-depressants because without them, I would probably have to be institutionalized. 

to be continued....

Elastic

Last night I had the pleasure of having my dear friend, Sarah, over for dinner and girl time. We laughed and talked and drank wine. It was wonderful. At one point we talked about how we were both empathetic to music. We can both feel it with our souls. (Speaking of souls, I have determined that I do, in fact have one.) Music has always been a part of my life and I hope that I will pass that passion on to Johnny one day. 

This morning, I was braiding my hair, listening to the top 100 playlist on Spotify, and "Elastic Heart" by Sia came on. For the first time in what seems like months, I felt hope. 

Strange how a song about hearbreak and failed relationships can speak to me so strongly. It was as if this song was written for me, just for this upcoming week. I have (what I hope with every part of my being is my last) surgery on Friday.

I am going to be sure to bring my Bluetooth speaker to the hospital and have John play me this song when I wake up from surgery. 

"Elastic Heart"

Sia

For the first time I feel like a Survivor, not a victim.

Fear

I am afraid.

I am having surgery on Feb 13th. This will be number 8 or 9. I've lost count. Dr. O'Boyle is going to cut out some scar tissue, reattach the tissue and inject some spasm-ed muscles with Botox to help them relax so that I can actually have effective pelvic floor therapy and hopefully less pain daily.

I am being cut again. This time willingly. I trust this Dr. I know she knows what is best. The thought of cutting awakens my hippocampus and memories of pain and hospital machines beeping and IV lines and needles and chemical smells overcome me. 

I am anxious of what could be. Will the incision re-open again? Probably not. My amygdala still fires ""Fight or Flight" through hundreds of synapses. 

When I have an anxiety attack, the volume in the room is deafening. I can't catch my breath and I am flooded with every possible negative outcome of the current situation. I lay paralyzed to the floor. Sometimes I just have to cry and cry and cry until I am out of tears. Other times John is able to calm me down before I spiral out of control of my own mind. It is terrifying to not be able to get a grip of your own thoughts. 

I am terrified of ever being pregnant again. Every night I dream of being pregnant one way or another and in every dream something goes wrong. I visited my midwife from Johnny's pregnancy and she told me "you shouldn't have any more pregnancies". Why would you tell someone that when you haven't treated them post partem? I want to be pregnant again. I want to have a good experience coming home after delivering another baby. I want to nurse and diaper and lift and care for another baby. I want to do all of those things that I was robbed of, but I am so afraid! 

I have been internalizing a lot of my anxiety and my fears and put on a strong front because I am a mother and my job is to take care of my son and his needs. I take medication. It is easier to use the prescriptions than to face these fears and make sense of these anxieties. 

Some of my anxiety isn't even truly relative as my therapist says. 

I am terrified of ISIS busting through my door and killing my husband and my son. I have this fear because my husband has a high rank in the Military and sometimes goes on Classified assignments that he can't even tell me about. The chance of this actually happening is probably 1 in 100,000, but the odds don't keep me from having nightmares or jumping out of my skin when there is a knock on the door.

I am terrified of sending my son to school one day. I am afraid that his school will be one of the targets of a mass shooting. Is this fear truly relative ? It feels like it to me. My sister text-ed me not ten minutes ago that her school was on lock down and she didn't know why. A month ago her school was on lock down because some kid stabbed some people. My mother was principle of a school in Arizona and had to lock down her school when a student threatened to shoot the school up. No one expects their child to be killed at school, and "you can't live your life in fear" but right now I can't even get past letting my son out of my sight. 

I don't remember the last time I prayed until today. In the shower. When the scalding water wasn't helping wash away the fear. I'm not sure who I was praying to. Whoever created us and watches over us. I am finding my way. I asked for strength. 

For those of you who read this and feel worried about me, please don't. This entry is to help me get these thoughts out of my head and onto paper. Digital paper anyway. I would love prayers sent my way for peace of mind. I would like prayers sent to the hands and minds of the surgeons and nurses, and prayers for my husband to continue in his patience and amazing love.

Maybe another baby?

So, are you guys going to have more kids?

This is the dreadful question that haunts my dreams and follows me everywhere I go.

"Johnny needs a playmate, a sibling!" "Maybe after your body recovers." "Two or three years apart is the perfect age gap."

When this is asked of me, I freeze up. I produce a nervous half smile, force out a fake giggle, say "maybe..." and turn around and walk away as fast as I can. How could they know how hard it was just to get through this first year with this perfectly easy child?

When this is asked of me, what I want to do is yell, "Don't you have any idea what you are asking? It's none of your damn business, you nosy jerk! Can't you see my pain? My Anguish? Why can't you understand that what you are asking is completely out of line?

Sometimes when I am at home with my husband and my son, something will happen and I will start to cry. I will be reminded that, yes, I want more children. The happiness that my son gives me compares to no other happiness and more children would absolutely make my life more fulfilling.

The truth is, I am terrified. If I become pregnant, I will be high risk, most likely on bed rest and definitely will undergo a mandatory cesarean. These things I am sure of. What I am unsure of is the pain. I don't know what the pain in my pelvis will be like from the weight of the baby. I don't know what the pain in my abdomen will be like with all of the scar tissue that has formed behind the ostomy scar. Would the delight of a tiny baby flutter outshine the pain?

I worry what will happen when I go off of my anti depression medication during pregnancy. Will the hormones make me happy or will I cower in a corner and have to have my grandmother come live with me to make sure that my first born is taken care of?

Yes. I long for more children. Will I get past my fears and be able to one day? I hope so.

Anxiety

One year ago, today, I checked into Ft. Belvoir Community Hospital. I was as pregnant as could be and even more excited. 

Tonight all I can think about is, "How has a whole year passed?" 

Unsurprisingly, I was diagnosed with anxiety disorder and post partem PTSD during my extended hospital stay in November 2013. I have a wonderful therapist and a wonderful Psychologist that I have working with me to treat these disorders. Last month I had a session with both my therapist and my Dr., and they were almost ready to clear me of my PTSD. They evaluated me the same way they did upon the first session and my results had improved greatly. 

Two days ago Johnny and I were playing and he stepped on my midline incision scar (the one that was used to create the ostomy, it runs vertically through my naval) and his little toes pushed in a litttle bit too deep. I felt a burning, almost tearing sensation. I was immediately transported back to a moment in the hospital when a nurse was pulling tissue and packing from that very wound. I could hear whooshing IV machine, I could feel the air filled hospital bed. I could even smell the sterile air.  There were two nurses arguing across my body about how the wound was being cared for. My heart began to race and I asked for Ativan for my anxiety.

This was a PTSD flashback and I hadn't had one in months. My husband was concerned. He thought Johnny had hurt me. I was paralized to the floor for about ten minutes, weeping. I told him I had a flashback and he understood. 

I can't stop time but I want to rewind it. I want to go back to one year ago, before all of the pain. I want to tell the Dr.'s what to do differently, tell them to do a ceserean. I want those first three months with Johnny back, only without a fog of pain medication. I want to breast feed my baby. 

His birthday is tomorrow, October 29th. He was born at 9:51 P.M. We went home on Halloween. I have a ball of anxiety deep in my stomach about his birthday. I don't know how I will feel, how much of the day will be spent crying. I want to remember his birth as a joyous moment, because it was! It was the most triumphant and beautiful experience of my life. The events that took place in the weeks after are what cause me such pain. 

However, when I close my eyes and travel back to the birthing room, the first thing I hear is my flesh being cut like a chicken breast between kitchen shears and the first thing I see are the bright lights being switched on so that the Dr. can see where she is sewing. I have to push extremelly hard past those things to hear his first cry and remember my tears of exhaustion and happiness and wonder.

I want to go back. It's al I can think about. I want these emotional scars to go away. How can they when I see the physical scars every day and all I want is to go back?

Reconnecting the pipes

The time had come for me to have my ileostomy take down operation. I was beyond excited.. I had been a slave to the bag and a slave to the bathroom. I was desperate to have my life back to normal! I had to have a couple of pre-op appointments. I was referred to Dr. Duncan at Bethesda and Dr. Duncan, in turn, referred me to one of his colleagues at Fort. Belvoir. Having the surgery at Belvoir was ideal. The hospital was an hour closer to home and the facility was much nicer. I knew all of the nursing staff on the surgery recovery wing very well and I was comfortable there. I met with both teams to see which hospital could schedule me first. 

Bethesda could get me scheduled in a week and Belvoir, a month. I chose Bethesda.
This post has lots of disgusting things in it so I will show you a couple of beautiful pictures that I took of the spring Cherry Blossoms in DC first.

We scheduled surgery for April 25th early in the morning. We left the house at 4:30 am. My wonderful friend (who my mother connected me to) Karen came along to be an extra set of hands for John before surgery. Upon arrival, they took me into a private room to change, gave me a gown and hospital pajama pants (why?) and had us walk through the entire hospital with the other pre-op patients to the pre-op area. They designated us our beds and told us to get comfortable. We tucked ourselves into our little corner and we waited.

We waited.

We waited for a long time. I hadn't had anything to eat (or, more importantly for a migraine sufferer, DRINK) so..... BAM Migraine. Capitol M.

Karen trying to cheer me up

Finally the anesthesiologist came along with Fentanyl (the drug they use to put patients under general in most cases) and he game me a healthy dose, hoping I could nap and  that my headache would dissipate. He was wrong. He gave me more Fentanyl. Finally, Dr. Duncan came by and told me he was going to get prepped and I would be on the table shortly. I was glad, because I felt like my eyeballs were going to pop out of my head.

About a half an hour later, the anesthesiologist came over to tell me that Dr. Duncan has been called in to an emergency surgery and we had to wait until he was done. I begged for an injection of Imitrex. 

Disappointed that we had to wait longer

 By this time, it was around 10 or 11, Karen and John were starving and we were all getting anxious. Johnny was being absolutely perfect, because, well, he is absolutely perfect. Finally, someone came to wheel me into the OR. My headache had just gotten better. I think it was around 1 before I went under.

Lights, cold room, ACTION!

I don't remember waking up.... I do remember being terrified of what would happen next. I knew that I would have to have a bowel movement like a regular person. Dr O'boyle, my Vaginal/Rectal surgeon had said, "I honestly don't even know what to tell you about how that will feel." I was scared; Scared but BAG-LESS!

The wound was covered with a bandage and the nurse had drawn a circle with permanent marker around the blood stain. She was monitoring the bleeding. It was covered for about 12 hours and then I was able to take off the bandage. The next few photos are GRAPHIC.
The wound was packed with gauze, which I had to pull out. I was kind of horrified that I was supposed to do this. They wanted me to pull it out, take a shower and then have the nurse re-pack it.

Before unpacking

Pulling out the packing

The cavity that was "Sylvia the stoma"

If you asked me how to describe what it felt like to have a giant hole in your abdomen, I would tell you that it felt like I had a giant flipping hole in my abdomen. I was unable to use those muscles at all. I couldn't sit up, I couldn't really do much of anything for the first day or two. 

Then the C-Diff hit me.

I would describe C-Diff as the worst possible thing that could ever happen to a patient after having an ostomy reversal surgery. Wiki defines it as: "a species of Gram positive spore-forming bacteria responsible for a type of widespread infectious diarrhea. While it can be a minor part of normal colonic flora, the bacterium is thought to cause disease when competing bacteria in the gut have been reduced by antibiotic treatment."

Basically, I had had so many treatments of antibiotics over the past few months that the healthy bacteria in my gut over populated itself to attack the antibodies in the medicine and made me very, VERY sick. The good thing was, my pipes were re-connected. The bad thing was, I was using them 15 to 20 times a day, for two weeks. I couldn't be more than thirty seconds away from a toilet. I was wearing disposable underwear all the time. I was unable to eat because I knew that ten minutes later it would come right back out. During one desperate moment I told my husband I would do anything to have my stoma back. 

I started an antibiotic in the hospital, (Yes, more antibiotics) and the diarrhea did not improve. I returned to the hospital after a few days of non stop sickness to make sure that I wasn't dehydrated. They gave me some butt cream, a new antibiotic and sent me home. I disinfected the bathroom every time I went in, and washed my hands so frequently they were raw and bloody. I would have died before giving that infection to my husband or son. I drank as much Gatorade as I could and a few days later I felt a little bit better. 

I had to change my bandage every day. It was amazing to see how fast the wound healed. The Dr. did "purse" stitches and closed the wound on the inside because it was a "dirty" wound. He said it would heal from the inside out and it did. 

 Here is a glimpse of the wound healing.

I put scar cream on the wound every day. It is slowly softening up and gradually getting lighter. The bathroom is a constant battle. I have so much scar tissue in my perineum and rectum that the muscles don't function properly anymore. I have control but it is very difficult for me to have bowel movements. Sometimes it takes 45 minutes. It is painful. It might always be painful. I am, however, grateful that I was able to come out of these operations alive to watch my son grow. Each day is battle, but each day is also a gift. 

Here's the scar 4 months post-op

To be continued...