I Am Tired

I have received an amazing amount of support and encouragement from my last blog post where I described our current medical issues (The Unexpected Diagnosis – PJ's Projects (pjsprojects.com)). Thank you!!

However, I realized after reading through all of the comments that I have inadvertently misled you. For this, I owe each of you an apology. 

Many of you have mentioned my strength or courage in this situation. You are wrong. I am experiencing a ton of emotions right now, but strength and courage are definitely not included in that list. 

I began contemplating how I would describe my feelings surrounding these issues and I landed on one word... Tired. 

I am tired.... of staring at these four walls. 

The walls of this hospital room are ugly and become uglier every day. I've decided that someone got a good deal on this paint color because I am not sure anyone would intentionally request this particular shade of yellow. 

I am tired....   of the food.  

I knew going into this situation that changing my diet to hospital food would be an adjustment. I realize that the food budget of a hospital is probably not a top priority for the administration (it is not money-maker) and that the staff do the best with what they have to work with, but overall, it is simply not good. It hasn't improved with time nor repetition. 

I am tired....   of not getting rest. 

Being pregnant is uncomfortable in the best of circumstances as body parts are stretched and pulled to accommodate the growing baby. It usually takes a considerable amount of time to find a position comfortable enough to allow sleep, especially in a hospital bed. I struggle with this positioning ritual and drift off into dreamland only to be woken up a few minutes later by a staff member. I realize that they are only doing their jobs, but I'm still tired.

I am tired....    of missing out on my life. 

Spring and summer are my favorite times of the year. Experiencing them through a window or screen is simply not the same. My life may not be an overly exciting one, but living it is definitely more interesting than what is on the television. 

I am tired....     of missing out on the important events in my kid's lives. 

Scoring a goal, losing a tooth or saying good-bye to a furry friend should involve the presence of a mother to cheer or comfort the child as needed. My kids are missing out on this component of their childhood. I understand that it is temporary, but the feelings of guilt are still there. 

I am tired....    of arguing with medical staff about unnecessary procedures. 

I understand that a lot of it is "policy" and originally designed to be in the best interest of the patient, but over time these policies have begun taking over the thinking process of some healthcare professionals. Clicking a button to order something because it is recommended for a mass audience is not always in the best interest of the individual patient. In my opinion, critical thinking and evaluation of the whole patient and their individual circumstances are necessary components of true health care. 

      -- IV placement - I argued for three days to convince the staff that I didn't need an IV line placed "just in case". I understand that placing an IV line is easier under calm circumstances (like admission) but there is a chance that I will be a patient for weeks or even months. Besides my defective uterus, I wasn't sick and didn't need any IV medications. Introducing an IV line prior to needing any IV medications or fluids had the possibility of introducing unnecessary medical risks of infection and other issues associated with long-term IV access. I consider this one a tie as I made it over two weeks without an IV. (A false alarm incident occurred where early labor was suspected and I agreed to IV placement and fluids.)

       -- DVT prophylaxis - DVT stands for deep vein thrombosis, aka blood clots. Prophylaxis means prevention. When a person is immobile for long periods of time, like lying in a hospital bed, the risk of developing a blood clot increases. A lot of healthcare systems have computer programs that spit out lists of patients that have been in the hospital for a certain number of days and that do not have medication to prevent these clots. At six days after admission, it was highly suggested that I start taking low-dose blood thinners to prevent any blood clots. I used my clinical judgement and disagreed with this assessment. While I was admitted to the hospital and less mobile than at home, I was hardly bed-bound. As I mentioned before, I am uncomfortable and find that routine movement around my room is necessary for stretching muscles and maintaining a morsel of sanity. Picture a wild cat at the zoo, pacing the walls of her cage and you have an idea of what some of my days include. In addition, I may require unexpected and immediate surgery if my uterus was to rupture. The surgeons would be tasked with saving my baby and cleaning up the mess of the exploded uterus, which includes stopping any bleeding. Adding a blood-thinner (even a low-dose one) adds unnecessary complications to the surgeon in this scenario. After explaining my reasoning, they agreed and stopped pushing this medication. I won this one. 

      -- Increased mobility - The physician and pharmacist were concerned about my risk of blood clots and encouraged increased movement. I took them up on this one and decided to escape from my jail-cell for a breath of fresh air. I only managed two escapades before I was caught and reprimanded. It was explained to me that I wasn't a prisoner but if I wanted to leave the room, I must have a staff member wheel me around the hospital while securely fastening a mask to my face. This seemed counterintuitive to the idea of increased mobility and fresh air. I decided that I would rather pace back and forth in my cage. The hospital staff won this one.

I do not intend to be a difficult patient. I simply don't want to add any complications or problems to my current situation. Just because a medical intervention can be done doesn't mean that it should be done. The constant justification of my reasons to decline is exhausting. 

I am tired....    of breathing recycled air and the glow of artificial lights.  

I attempted escape to experience fresh air and sunshine only to be caught and lectured on the hospital policy (see arguing with hospital staff discussion above). You wouldn't think that the lack of something so simple could make a person tired, but it does. 

I am tired....    of being the patient. 

I spend a good portion of each day being hooked up to monitors, scanned, questioned, prodded or poked with needles. I realize that many other people have experienced much worse in their quest for improved health and that my experiences pale in comparison to their suffering. Yet, I am still tired. 

I am tired....    of putting on a brave face. 

I truly appreciate the phone calls, visits and messages from people offering support and encouragement. These things really do help, but there are just some days that are worse than others. It doesn't matter if I blame it on hormones, cabin-fever or my gradual slip into insanity, the result is that I am just down. When a person goes out of their way to bring me company and solace, what right do I have to bring them down by admitting that I'm a struggling mess? So, I fake the confidence and acceptance of my situation in hopes that they don't figure out my lying scheme. Being an actor is tiring. 

I am tired....    of hearing healthy babies cry. 

I am being housed in the mom-baby unit close to the surgical unit. A bigger person would be happy for the family in the other room comforting their new bundle of joy. However, all I can think about is that my baby girl will not be one of them. If she survives, she will spend weeks to months in a NICU cubicle enduring multiple medical interventions. Every time that I hear one of these babies cry, I am reminded of the long struggle ahead for my little one. I am angry, sad, and bitter. Carrying around these destructive feelings of jealousy is tiring. 

I am tired....    of trying to make important, possibly life altering, decisions with little medical information to support it. 

I understand that this situation is uncommon and that continued monitoring and decision making is best made as the tests reveal more information. Most recently, the physicians have explained their reasons for suggesting a planned C-section after 28 weeks versus allowing the pregnancy to continue and risk a rupture. I understand and agree with the rationale that doing a planned C-section under controlled circumstances is a better option. It would allow 48 hours of steroid treatment to improve baby's lung function and decrease risk of head bleeds. It would give the surgeons a better environment in which to work. It would decrease the risk of bleeding. It would decrease the risk that the umbilical cord would be compressed and could deprive the baby of adequate blood flow and oxygen. Compared to allowing the uterus to rupture and scrambling to clean up the mess, a scheduled procedure seems to be a no-brainer. 

However, the million-dollar-question becomes "When?". The timing of the rupture is an unknown. What if I choose to have the elective surgery and our baby suffers unnecessarily because we ripped her from the womb too soon? What if I decide to gamble on my defective uterus and a rupture causes her to suffer brain damage as a result of waiting? I feel like I am studying for a test for which there is no right answer. I feel as I am going to fail regardless of the choice that I make. Only in this case, the consequences are much more severe than a failing grade. I am tired of trying to pick the "right" answer. 

So readers, I am sorry for misleading you. I am not the strong and courageous person that some of you were duped into believing that I am. 

By myself, I am weak, broken and... very tired. 

Then Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. - Matthew 11:28

He feels pity for the weak and the needy, and he will rescue them - Psalms 72:13

Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand. - Isaiah 41:10

And the Holy Spirit helps us in our weakness. For example, we don't know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words. - Romans 8:26

The Lord himself will fight for you. Just stay calm. - Exodus 14:14