Tired

Another night of still being awake well past 2 AM.  Sleep has never been a commodity that comes easily to me.  I have struggled with insomnia my entire life, childhood included.  Lately it has been worse than its normal awful.  When I do manage to sleep I often wish I hadn’t as nightmares have been more and more frequent.  It seems every time I feel I take a step forward in this supposed healing process I take about 6 steps back.

There’s something horrifically unjust about reliving the most gut wrenching experience of your life while dreaming on a regular basis.  Sometimes my brain switches it up and it’s one of my still living children who dies instead.  Or, just for kicks, it’s my husband doesn’t come home from deployment or he is extended again.  Why not?  Each day is its own form of pain so why not make the snatches of sleep I get here and there torture as well?  Seems fair.

This current lack of sleep is not improving my physical and mental health at all.  The ‘normal’ fatigue and brain fog, two of my biggest everyday Multiple Sclerosis symptoms, have worsened the past couple of months.  For example, I have thrown my car keys into the trash can multiple times in the past month.  I can’t even count the number of times I have lost my phone, sunglasses, remotes, books, etc.  I feel like I am walking through thick mud by 2 PM each day making each movement I make feel much harder than it should and end up slurring my words by mid afternoon most days of late.

My MS neurologist sent me to a sleep psychologist.  His diagnosis was insomnia and that I have a delayed sleep phase syndrome.  His suggestion was to stay up until I feel sleepy (not tired as there is a huge difference between tired and sleepy) and then try and go to bed and sleep until I am ready to wake up and get up.  I don’t think he appreciated the facts that are my life.  I have 5 children here at home whom I have to take care of, including schooling them.  My spouse is deployed so it really is up to me to take care of all of them and the many things that go with having a large household.  Perhaps if he could write me a prescription for an au pair I could follow his advice.  Considering Tricare won’t cover what my general surgeon says is medically necessary in order for him to repair my hernia I doubt they would cover childcare.  Ha.

The more exhausted I have become the harder it is to deal with even the smallest things.  I find myself withdrawing from interacting with others even more than I already had been doing since the death of our little one.  It sounds exhausting to try to smile and nod politely, let alone talk to another adult human being.  The more I isolate myself the harder it is to stop doing it.  It makes me feel like I don’t even know who I am.  Like I am just living inside this shell of what is left now.

I don’t feel like me, I don’t know who I am now.  I feel lost and drifting.  I think that is one of the things I am most tired of.  I don’t know the person who stares back at me in the mirror anymore.  She looks as tired as I feel so I guess we have that in common.  Tired.

Knowing Now What I Wish I Had Known Before

They say hindsight is 20/20.  It seems unfair.  Knowing what could of been done or should of been done differently is some days what makes it hardest to keep putting one foot in front of another.

My tragedy didn’t just happen last summer.  It began back in the early 2000s when I was pregnant with my oldest.  My first 8 months I had gained 18 pounds, in the 4 weeks prior to his birth I gained just over 35lbs.  My body was so swollen.  I knew it wasn’t right.  I went in to be seen time after time.  I was seen throughout my pregnancy, and prior to it as we went through infertility treatment, at John Hopkins.  I was naive, I thought they were the best.  If they said I was okay, I must be okay.

I was at the hospital 3 times in the week prior to my water breaking at 39 weeks at home.  The resident who saw me the 2nd time wanted to admit me.  He saw the swelling and pitting, I was dilated to 3 cm.  However he was not allowed to admit me.  Despite the fact the pitting was so bad and I had been having extreme headaches for 2 weeks.  The hospital guidelines were that you had to have at least 2 of the 3 preclampsia indicators; those being swelling/extreme weight gain, high blood pressure, and protein in the urine or you had to be dilated to 4 cm.  His attending physician made this call not to admit me without ever laying eyes on me or examining me himself.

The resident sent me home with a 24 hour urine collection.  I came back the next night to drop it off.  The following morning my water, by the grace of God, broke at home.  When I got to the hospital and into the L&D department that is when chaos started to ensue.  It turns out that the protein in my urine was extremely high and someone had failed in their job to call me with the results and get me back and admitted ASAP.  By the time they had me admitted when I arrived after my water breaking they realized I had been very right and they had been very wrong.

I continued to labor.  About 4 or 5 hours into laboring at the hospital they informed me they needed to give me an epidural because my blood pressure was very high and they thought the epidural would help bring it down.  Following the epidural my blood pressure went higher.  They then decided to put me on a Mag drip, along with a Pitocin drip as the Mag by itself would slow labor.  I had everything I didn’t want done to me done.

I eventually after 10+ hours of labor at the hospital made it to 10cm.  They then had me push.  I pushed for over 2 hours.  My son was sunny side up and after each contraction and push he would go right back up to 0 phase.  The epidural did little for the pain because it was back labor because of his positioning.  Also, because of the epidural, I was not allowed to labor in a position that would help him naturally be able to descend better on my feet because you can’t stand with an epidural.  The whole time I kept saying, well at least next time…  My labor nurse was dumbfounded by me.  She told me that not once had she heard a patient say there would be a next time during actual pushing.

After over 2 hours went by of pushing I was not doing well.  They rushed me to the operating room and did an emergency c-section.  They allowed me to briefly see my son.  He opened up his big blue eyes and stared right into mine and a love that I had never known the fierceness of before was instantaneous.   They then took him away and made my husband leave as well as I was fading fast.

I went into DIC (disseminated intravascular coagulation) on the operating table, nurses call it death is coming.  Everything was bleeding, my body was in shock.  My urine was completely red so they ran sterile milk through my bladder to make sure they had not nicked my bladder.  No, they hadn’t, it just turns out I was that far gone.  Eventually I woke up in the L&D department.  The next few days are very, very fuzzy with few memories as they had to keep me on the mag drip to help my blood pressure go down so I wouldn’t go into seizures.

My husband, that wonderful man, literally nursed our son.  He helped him latch onto my breasts while I was basically completely out of it.  He changed diapers, burped him, bathed him, all the things I had waited so long to do.  Our friends who were there at the hospital got to hold my son before I did.  That’s a bit hard to bear still.

Two days later my mom arrived.  My mom who was a nurse, including a labor and delivery nurse.  She said when she saw me she could barely recognize me.  Unfortunately for me, she was the entire country away because we were stationed in MD at the time and my family is from the west coast.   I wish she had been nearby.  She would of known what to do and how to make a doctor listen.  I wish I had been advocated for as being a first time mom I took the different doctors I saw words as gospel.

It was all ok though, I believed, because my son was ok and I thought I had learned some valuable lessons.  Turns out I hadn’t learned enough.

In 2004 the American College of Obstetricians and Gynecologists (ACOG) issued new clinical guidelines regarding VBACs.  When I became pregnant with our 2nd son I was told that a VBAC was not an option at the hospital I was near due to ACOG’s new policy change.  I fought with my OB, I begged, I pleaded, and he refused.  I understand that he couldn’t perform a VBAC because they had threatened already to not insure him if he did anymore.  What I don’t understand is when he knew how strongly I felt about having a chance of trying to have a natural birth and hopefully avoiding a repeat c-section why he didn’t advise me that I could go else where.  That I could be seen by an OB in a neighboring city that had 24/7 anesthesiologists at the hospital.  He could of told me that would be an option, that there was an option available to me elsewhere.  He didn’t.

I once again was naive and did not search out options and facts for myself.  I took another doctor’s word as absolute.  I had a repeat c-section, one I vehemently did not want to have.  By the way, I could of not scheduled a c-section and gone to the hospital once I was in labor and they would of had to keep me as a patient, legally.  I wish I had known that as well.

When it came time for our twins to be born we were in a large hospital.  I spoke to my OB at the time that I really did not want another c-section.  They were twins, they were small, please let me try.  He also refused.  He told me if I came in with one already coming out of me he would cut me open to deliver the other.  I should of ran away when he said that.  I should of searched out to see if there was a group that could help me.

I pause here to let you all know there is such a group.  They are called the International Cesarean Awareness Network (ICAN).  They work with women to help them be able to have at least a trial of labor and VBAC attempt.  If you find yourself in a situation where you had to have a c-section, perhaps an emergency one like my first was, and you also want to attempt a VBAC I want you to reach out to this group.  They have chapters all over.  You can find them online and on Facebook and they can direct you to the chapter closest to you.

Our twins were born at just over 38 weeks via another scheduled c-section.  Our 5th child was also born at just over 38 weeks via a scheduled c-section.

When I found out I was pregnant in late 2015 I was in such shock.  After our first 4 had been all infertility treatments due to my PCOS and Hashimoto’s I was shocked to find myself pregnant over 7 years after I had given birth to our youngest child.  I was much older (think very late 30s) and thought much wiser.

Two weeks after I found out I was pregnant myself and our 5 children, along with my mom, made a cross country road trip.  We had decided our children and I would live near family while we waited for our house in VA to sell and for housing to be available at my husband’s new duty station.  I saw an OB for the first time at the end of my 1st trimester.  Everything looked great.  I didn’t think we would be there for long so I didn’t get into the conversation about wanting to do a trial of labor.  As months drug on and we were still there and no housing in sight so we could join my husband I ended up having to have that conversation with my OB.  He refused, he wouldn’t listen to any of my arguments.  He wouldn’t read the literature I brought him.  Nothing.  I then asked if I had to have a c-section if it could be a gentle one like I had read some hospitals are now performing.  If I had to have one I wanted a clear drape so I could see my son be born.  I wanted immediate skin to skin contact, and I wanted them to wait a minute or two before cutting the umbilical cord.  He refused to even consider giving me that option as it “the hospital policies did not allow for such requests.”  I left and did not return.

I found a wonderful doctor who supported me to a certain extent.  It was a further drive from our home but he was willing to let me have a trial of labor as long as it happened by my due date.   And that the moment I was really in labor I would go to the hospital immediately.  I agreed with him.   He also agreed that if a c-section was performed it would be a gentle c-section.  When he heard my obstetrical history he was saddened and angered by all I had been through and how poorly treated I had been.

The odds of uterine rupture after four c-sections is less than 5%.  The odds of uterine rupture while not in active labor are basically unheard of.  When my uterus ruptured I was not dilated and was not in active labor.  Had I been dilated and in active labor I would of been in the hospital when my uterus ruptured and my son would not be dead.

I can say now that had I known I would be the less than .005% who had a uterine rupture, not in labor, not dilated, and not in a hospital, yes I would have scheduled my c-section at 38 weeks.  But you see, there was no way I could know that.  I had ran the numbers in my analytical mind.  I had weighed the options and the risks and felt I was making the best decision I could for my baby and for myself.  Having Multiple Sclerosis a possibly unneeded surgery would put great stress on my body and set me up for relapse.  That also went into my decision making.  Remember though, I did agree and did have a c-section date set up for my due date.  It had also been over 8 years between deliveries which made the odds of having a uterine rupture even smaller.  I thought I knew everything.

If I were in the same situation again though, having not gone through an uterine rupture I would still make the same decision.  I would however ask to have the window in my uterus checked from 36 weeks on to look for thinning via ultrasound.   It’s only hindsight that can give you 20/20.

It is a sad, sad state our country is in when we say women’s bodies are their own.  We are allowed to do whatever we want with them, including abortion.  But the one situation that we are stripped of our rights where are bodies are concerned is in giving birth to our children.  That is disgusting.  As my OB said, it was my 2nd c-section that sat me up for this tragedy.  The first one was needed.  I would of died without it.  Though had they listened to me and treated what was happening to me seriously and induced me a week or 2 weeks earlier I may very well have not needed an emergency c-section.  Or even if they had tried to turn my son, I still may have been able to push him out.  They didn’t attempt to turn him from his sunny side up position and that makes it harder for any woman to push a baby out of an already small area.

I want others out there to avoid my mistakes.  I want you to advocate for yourself.  I want you to know there are others out there who will advocate for you.  It is your body, not a doctor’s.  You are in charge.  You are the one in control, they cannot force you to have a c-section you do not want.

It may seem crazy that after having an uterine rupture and my baby dying because of it that I would feel this way.  That I would encourage other women not to have repeat c-sections.  I wish someone had encouraged me.  I wish I had known what I know now.  I hope that someone reading this one day will learn from my mistakes, from my not advocating for myself.

Our bodies are made to give birth naturally.  It is Western medicine that tries to tell us they aren’t, our pelvis is too small, lie on your back to give birth, have epidurals so you can’t stand which would be the natural way for a baby to be able to descend out of the birth canal much easier.

I should be holding my son right now.  For the past 45 weeks I have had to live with my mistakes and bear up under the weight of such guilt and what ifs.

I plead with you learn.  Learn about your body.  Learn how to advocate for yourself.  Find others to do it for you if you can’t.  Learn from books that are not biased by our Western conventional medicine.  Learn from my mistakes.

Anger

This past week I have been angry, immensely irate.  I try so very hard not to dwell and stay engulfed in thoughts that will make me feel this way.  Sometimes life sure does its best to stir it all up again.   We just seem to have had one thing after another and my ability to deal is waning.

Last month I was going to meet my husband at a port visit in Australia.  I didn’t even allow myself to really believe it until they pulled out of the port prior to the Australian port visit.  It was the first time in his nearly 17 years of naval service and almost 19 years of marriage that I had the opportunity to do so.  So for 2 days I allowed myself to become really excited about it as it was a mere few weeks away.  Then the news came that due to current world events they would no longer being pulling into port in Australia.  That hurt, a lot.  It has been really hard to spend more than 50% of the last 10 months since our baby’s death apart.  It definitely has not improved the grieving process.  OK, I told myself, I can do this, I’ve dealt with much bigger blows and I will see my husband next month when he comes home, or so I thought.  He has now been extended an extra 30 days and quite frankly I cannot let myself hope that his deployment will not get extended further.  It’s easier at this point to assume that it will be delayed further and then we can be happily surprised if it isn’t.

Last week I was scheduled to finally have my hernia repaired.  I have a large (think cantaloupe size when standing without a binder on as my intestines bulge out of it) hernia in my lower abdomen.  This was caused when my uterus ruptured.  It was a complete rupture and instead of it staying just along my prior c-section scar it did a J hook.  Our baby boy came completely out of my uterus and when I told him “hold still that hurts mommy” he was unbeknownst  to me fighting for his life and ripped out a portion of my abdominal wall which is how the hernia came to be.  I have walked around for the last 10 months with not only a gaping whole in my heart but also a literal one in my abdomen.  When I found out that my husband’s deployment was extended I was done.  I had already waited to have it repaired so he would be here for the surgery and my recovery.  The thought of going to a hospital again brings up so many horrible feelings of dread, terror, sadness, etc. that I wanted, no needed, him by my side.  But as I said, I was done, done walking around with this large constant physical reminder of all that has occurred.  So, in a moment of anger and feeling through with it all I called and scheduled my surgery for the hernia repair and it was to have been done last week.  I felt a moment of relief once it was scheduled knowing soon I would at least have some of the physical discomfort and pain I have been walking around in alleviated.

A week prior to my surgery date I received a phone call from my general surgeon’s office manager.  Silly me, I thought she was just calling to confirm and set up my pre-op appointment.  No, she was calling to tell me that my surgeon had cancelled my surgery.  He is refusing to do it without a plastic surgeon being present who would perform an abdominoplasty (more commonly referred to as a tummy tuck) at the same time.  He had sent me previously to see a plastic surgeon which I did.  Tricare (our health insurance) had denied the authorization for the abdominoplasty.  I appealed and they denied it again.  My surgeon now will not do the surgery, period, without the other being done at the same time.  He strongly believes the hernia due to its large size will reopen sooner rather than later due to not only the extra skin I have from multiple pregnancies but also from the severe diastasis recti that occurred while I was pregnant with our twins.  Given I am not quite 5 foot 2 and that I went just over 38 weeks gestation with them you can see why I have such a large separation of all of my ab muscles (disastasis recti).

I am mad, really mad.  I completely understand why my general surgeon didn’t want to do it without the other and why now he has refused to do it without the other and believes it would be medically negligent to do so.  I am mad that the abdominoplasty was denied twice.  Now, if I had gone through bariatric surgery and loss 100s of pounds they would have been much more likely to cover it.  How fair is that?  So now we will have to cover it.  I am putting in more appeals but the likelihood that Tricare will change their minds after already denying it twice is slim.  Being forced to pay for a surgery that Tricare won’t because they claim it is only cosmetic (which, hello, how is that possible to believe that when the general surgeon WILL NOT FIX MY HERNIA WITHOUT IT?!!!) makes me mad as a hornet.  It is just one more thing in a long string of things these pasts few years.  Here’s a fact, I save them in less than 2 months time what they would have to pay for this surgery by not taking the standard MS disease modifying drugs (DMDs) neurologists want me on and instead have done everything holistically that I can to help my MS not to progress as I had such bad reactions on their DMDs.  But of course, they could care less about that little factoid.

I am angry that I have to deal with this on my own.  I am angry that I had to move to a brand new place 3 weeks after my baby boy died without any support system in place.  Do you know how hard it is to try and be friendly and make friends when your heart is shattered and you never know when the tears may just sneak up on you out of the blue?  There are so many triggers, getting formula and diaper coupons in the mail (still), songs, seeing babies, every Friday, every 1st of the month, milestones missed, our other children’s tears over their loss and fear for their mom.  I am angry that I cannot visit my baby’s gravesite, he’s buried with my grandma and grandpa.  I so often just want to sit and talk to him and cry where his body is laid at rest.

I am angry at politicians who want to try and bait countries into war, in my opinion.  I am angry that our country is still led by this 2 party system and I feel I don’t fit in it.  I am angry that my voice and beliefs are not represented by our countries leaders.  Seriously people, there has to be a way for there to be a viable option besides this left or right business we have now.  I am angry that I have added worry about my husband’s safety.  It was already hard enough to not be anxious and scared at the drop of the hat this past 10 months without all these added stressors.  And guess what stress is?  The biggest instigator for health decline for MS.  Lovely.

My mom had asked me awhile ago if she could start a Go Fund Me page after the abdominoplasty was first denied.  I wasn’t overly enthralled with the idea.  She brought it up with me again after my general surgeon cancelled my hernia repair surgery.  I acquiesced and allowed her to set a page up.  I have never been good at asking for or wanting help.  I always think I need to be the strong one.  My mom tells me my first full sentence was “I can do it myself.”  It has sort of been a life long thing for me.  I hate to be needy.  I hate to have to have help.  But, as she pointed out that sometimes takes away others’ joy that they get from being able to help others.  So, I did, I said yes, I will take help from others.  I am so tired of trying to fight all of this by myself.  So thank you to those who have donated and I am sorry to everyone else that until now I was not ready to share the link myself.  Here it is.

https://www.gofundme.com/jenniessurgery

You have my permission to share.  I am getting over myself.  Or at least desperately trying to.

Drowning in Waves of Grief

Nearly 10 months ago a day came in my life that drastically changed me.  My youngest son died.

I was 39.5 weeks pregnant.  My spouse had flown in the night before so he would be there for the birth of our son.  We had been apart for most of my pregnancy due to the needs of the Navy and lack of housing for our paygrade where he had been suddenly transferred to after serving out only 14 months of what was supposed to be 3 year orders.

I remember so very vividly the hour drive up to the hotel near the airport where we would stay for the night.  As I drove up I looked out at the rolling fields with the golden wheat rippling in the wind like a sea of gold.  I felt this overwhelming sense of peace, a peace that had been lacking since my MS diagnosis 3 years earlier.  I had made it, we had made it, and we were in just a few short days going to meet our son.  The peace I felt was so tangible and thick.

I remember checking into our hotel and fixing my hair and makeup while I waited for his plane to land.  I rushed (waddled) into his arms as soon as I spotted him.  Together again, at last.  Being in his arms took any lingering worries away and even eased the pain I was in from 3 months of costochondritis (if you know what it is you know the pain I was in, if not look it up, most people think they are having a heart attack when they have this condition) and 3 plus weeks of prodromal labor.  We headed to our hotel and enjoyed each other’s company until he fell asleep and as did I eventually when the prodromal contractions slowed down for the night.

In the morning I woke needing to pee, again, 39+ weeks pregnant makes that happen frequently.  As I lay back down I felt a horrific sharp pain in my left hip.  It felt like my hip broke.  I woke up my husband as the pain was intense and I had been having more contractions since I had woke the last time.  After about 15 minutes I told him I think this is real, we need to go to the hospital.  The pain did not let up.  I was very naive and I thought it was just labor.  I have a high pain tolerance, that was not my friend on this fateful morning.  My husband packed up our room and pulled the car around.  As he was packing I felt our son push so hard where I could feel all of his back pushing out of my abdomen.  I told him, hang on baby boy, that hurts mommy, were going to the hospital now.  After packing the last of our stuff in our car my husband helped me get down the hall and stairs.  Each step was complete agony.

Once in the car I called the labor and delivery at our hospital.  I explained what was going on and that we were on our way.  They even asked if I thought we should stop at the hospital that was a little closer to us.  Looking back now I think they knew already something was wrong.  I said no and we would be there in 15 minutes.

My husband pulled up to the ER entrance where they had someone waiting for me.  I was rushed to the labor and delivery department.  My doctor came in.  They used the doppler first and could not find a heartbeat.  They then used ultrasound and saw his heart beating but only because mine was making his continue to beat.  They checked my pelvis for dilation which hurt so immensely, while they did I writhed on the bed in pain.  I remember my OB saying stay still, stay calm.  I was not dilated, my cervix was completely closed.  They rushed me to the ER.  They attempted to put an IV in my left hand, it didn’t work.  I told the nurse my left rarely works, use my right.  They put the mask over my face and put me under.

I woke several times I am told before the first time I woke up and remember being awake.  Each time I woke they said I asked about our baby boy.  What I remember from finally be truely awake and aware was asking “Is my baby boy okay?  Where is he? Is he okay?!!!”  I then remember the nurse telling me “I am so sorry, he didn’t survive.  Your uterus had ruptured, a complete rupture and he didn’t make it.  We tried for 43 minutes to revive him but he never came back.”  It’s amazing how your mind can remember an exact number like that after general anesthesia.  That number is forever seared into my brain.

The next thing I saw was my husband walk into the room with our son in his arms.  With tears streaming down his face, a look of horror and pain that in our nearly 18 years of marriage I had never seen.  He placed our baby in my arms.  I stared down at my absolutely perfect looking 8lb 6oz baby boy and held him as sobs tore through my body.

I cannot go any further with this right now.  This will have to be the starting point for this story.  There is so much more, before this day, after this day, and everyday that continues each day I wake.  Grief, I had never known grief or guilt like this until the moment my stillborn baby son was placed into my loving arms.

This is my journey, a way to alleviate some of the constant pain and lingering fear.  A way to hopefully eventually be able to give hope to others who face something similar.  To know that they can keep putting one foot in front of the other.  That eventually they will come to a place where the grief doesn’t swallow you whole every moment of every single day.