Many people ask why God allows bad things to happen. He has reason for all that he does, even if we do not understand it at the time. This is why we must have Faith, and Trust. Challenges help us grow, and they create empathy in us. If no struggles existed we wouldn't have an appreciation for others, for gifts, for kindness. We wouldn't have a need for God, or Faith. God allows us to journey down our own path in life, knowing that we need experiences. We make choices, whether good or bad.
As for my health struggles, I trust God to lead me to the right surgeons, and doctors. God gave the gifts to those individuals so that they could heal sickness, so they could mend broken bones, or remove harmful things from our bodies. This is one way that God heals... he has gifted others with a talent for helping others medically.
I get asked, "Did you get a second opinion?" I want to bang my head against a wall. I have gotten second opinions, third opinions, fourth opinions... I have seen doctors in different specialties to rule out everything. I have left no stone unturned.
I had a less invasive surgery, and my issues became worse. I saw a different surgeon, and she ran new tests. She said, "Ileostomy, and no you will not be able to have the procedure Joe had. A J-pouch will not work for you. Your diagnoses is muscular, and the problem will only come back with a J-pouch. You will have a bag, for the rest of your life". I went home, and I cried with Joe. He left work early, and met me at home. He met me on the basement stairs, and I was still holding it together. The moment he wrapped his arms around me, the first sob escaped my body. I broke down. It was 5 days before our wedding. How could he still want to marry me knowing I would be facing such a surgery, such a physical change? We didn't take her opinion as the answer. We went with a different surgeon, and no ileostomy. We thought the less invasive surgery must be the answer. We were wrong.
I have been spending the past year post-op in agony. I have missed so much of my life. I lost days with my children and husband. I have missed almost every social event. I have lost time on the ice curling, and trying to improve... instead taking steps backwards. I am not sure that anyone would even want me on their curling team now. I have suffered financially. I lost my JOB as a nurse in a doctor's office, because I was spending so much time in the ED or unable to get out of bed, or I couldn't stop vomiting. I had to hire a lawyer to go to court in order to receive disability, so it will be at least 2 years before I see any of the disability money I qualify for. There is a horrible feeling that comes with the inability to afford copays. You need to see the doctor to get better (so you can work and earn a living again) but you cannot afford the copay demanded at the time of the visit, so you must pick and choose which doctor to see and when. If I had just lost my job (got fired or laid-off), I would receive unemployment, but since I am disabled (my doctor has documented such) I must prove it through a court hearing before I can get any disability payments. There is a 2 year wait for such hearings. My lawyer said most people lose their homes before they see a check, so they attempt to go back to work, and then get worse, and lose the job, and it continues in a cycle.
Not having the ileostomy surgery a year ago was my choice. It was not God's doing. So all of the bad that has taken place are results of my actions, not unanswered prayers by God.
What if I had the surgery a year ago? I don't know that answer. The answer may be that all of that time spent on my knees praying for relief was met with an answer, and answer I brushed off. I instead chose my own path, not God's. My dad had said, "I do not believe that an ileostomy is God's plan for you." My husband was worried about my strength of handling the after effects and body image of an ileostomy. I believe that God thought I was strong enough. He may need to use me to help others through this. Now that I am facing this possible surgery, I am not keeping quiet.
Maybe it wasn't that I was not strong enough for such a surgery. Perhaps, those around me were not strong enough. My parents were scared. My fiance, and then husband, was scared. My friends were mortified by the thought of my having an ostomy. My fist thought in the doctor's office, when she told me, was "I can do this." After talking to others, I became less and less sure. I started worrying more and more about what others would think.
I started thinking about all of the things others would think when that saw my stomach. I thought, "My bikini wearing days are over". Why are they over? I will most likely lose all of the weight I gained since my first surgery 3 years ago, and more! I will probably be back down to my pre-baby weight. The reason I would avoid a bikini would be to avoid offending others with my bag and scars. I even thought, "Will my husband take pleasure in seeing my tummy ever again". I researched what lingerie ostomy patients wore. I looked up the ways women made their bags seem less distracting, creating bag covers by buying and extra pair of panties with their new lingerie, and then going home and sewing one pair in to a matching "bag cover". There are also "bling covers" for your stoma caps. Women try to hide their stomas and bags. I thought about how people will hate seeing my stomach. I thought about the fact that I could never bring myself to change in a locker room. I have heard comments from other women when you even mention bodily functions, imagine if they accidentally see my bag. Is this the right way of thinking? That bag may save my life, allow me to be me again, allow me to feel like a human again, instead of living every day in constant pain and discomfort. Will I have the strength to embrace it? Each day I see that as a possibility. The people who judge me should be ashamed, not me, but I still am.
As for that bag... I am already looking at ways to get rid of it. Not out of shame. That external bag would make it difficult for me to do some of the activities I loved in the past, like Tough Mudder. A BCIR procedure would get rid of the external bag and allow me to move freely without having to worry about jarring a bag loose and facing a "Poop Catastrophe". Yet again, I thought, "still no bikini". I thought about the GIANT scar that would cover my belly as a result of this surgery. The small scars that would dot the remainder. I thought of the little two inch button hole that would be left behind on my side, and while it would be less appalling that a bag, it still would leave me abnormal. Yet each day I am able to accept and embrace this idea more and more. This would be my new normal.
I fight back tears when I think that I will be hideous to my husband. I then pray. I leave it in God's hands. He brought Joe to me, in a new light, for a reason. He put this friend before me: one that had also dealt with colon issues, one who was also going through a divorce, one who also felt insignificant at times, one who had mutual friends with me, one who has known me for over 20 years, and opened my eyes to him. I looked at him and truly saw him that day. I saw his face, and for the first time wanted to trace his jaw with my finger tips. I had to turn away from his deep brown eyes, because the feelings I had were sudden, intense , and confusing. God was working on my heart that day. I must trust that God has a path laid out before me that will lead me to great things. That he is able to help my husband to see beauty in all of my scars. Joe tells me every day that I am beautiful, and that my scars tell my story, and do not make me less beautiful. I need to Trust.
I need to allow God's plan to play out. He is going to use me for greater things.
I am seeking ways to help others through my experiences. I believe God wants me to be a light to others, and use my story to connect with others. I am looking in to having the rest of my journey documented. So many people see this as a forbidden topic. EVERY BODY in this world has a body that gets rid of waste. Why oh why have "urine" and "bowel movement" become swear words to so many people. Every body poops. Every body urinates. Every one has vomited at least once in their lifetime. Why make people with health concerns feel so ashamed? I did not ask to live like this. People ask what is wrong with my health, and when I tell them, they turn away disgusted. I then turn away and hang my head. I cry when no one is watching.
I would choose to be "normal" and whole if I could. Yet every moment of every day I must have thought in the back of my mind about what is going on with my body. Every twinge, every pain, every feeling of faintness. I have to calculate whether it is safe to eat that piece of candy, "Is my stomach feeling the least bit funny?" and I must calculate every choice to be social. Every few breaths I get pains in my side. I have to keep track of days (the last time I did this, or that) and then decided whether what I am feeling that day aligns with what my body has been doing daily, weekly and monthly. I am ALWAYS think about things that no one else ever thinks about, (muscle contractions, peristalsis, breathing, etc) just to get through a day. I know that out there, there are others struggling daily, just as I am. How can I help them?
Every day God listens to our prayers. There will be times you will think that he is not listening, or perhaps that he does not care. The truth is, just because you did not get the answer YOU wanted does not mean he did not answer your prayer. He answered it in a way that will guide you to the path he had laid before you, the one that you will often begin to wander away from. It is time for me to listen, and get back on that path.
I smile through tears.
I laugh through tears.
I survive through tears.
I hope through tears.
I heal through tears.
Day after day, more bad news. Today broke me.
What does one do when every time they dream their dreams are proven impossible?
I continue to hope, day after day. I am choosing not to live each day with "Woe is Me". I smile. I laugh. I am warm to new people I meet. I welcome everyone, and I assist anyone I can. My heart is still screaming, "When will it be my turn?" when no one is watching.
I have been called a Black Cloud, Jinxed, Bad Luck.
My husband calls me a survivor, and strong. I feel as if I just barely survive through the every day.
My psychologist is helping me through my past. The things I blog about may amount to PTSD... we will see. I am having anxiety and depression now. My continued health condition has brought up the BAD from the past, and has exposed me to new traumas. My psychologist tells me what a positive outlook I have.
My doctor said, "You smile when you are nervous" as we discussed treatment options and surgery.
I feel lost on some days. I wear so many masks.
A couple of days ago someone backed their pick-up truck into our parked van. The sliding door will need to be replaced. That can be easily fixed & I stay positive.
A few weeks ago letter came in the mail to deny my disability claim. This was expected. We knew we may need to hire a lawyer. So once again I stay positive.
Yesterday Joe and I met with our disability claims lawyer. I started to feel my heavy heart grow heavier. I received the news that hearings for disability take about 2 years to get a date for. That for 2 years, even though I am disabled (cannot work more than part-time hours, and my physical abilities are limited), that we will have to find a way to survive without my benefits. I am already shelling out extraordinary amounts in co-pays. The last visit to the Cleveland Clinic had cost us around $1000 out of pocket. Every time I see a doctor it is another $50. Our out-of-pocket monthly payment for health insurance in the first place is very high. The lawyer said that the court does not seem to care that those who truly deserve and need disability benefits end up in a state of destitute. They only speed up the process if you attempt suicide or homicide. They may (but not usually) attempt to schedule you sooner if you become completely homeless.
Any one who has spent a full week with me sees how I struggle to make it through the day-to-day. I may have a great morning, but it will be followed by a horrible evening. I may be able to visit with friends one night, but be vomiting and in too much pain to function hours later.
Joe and I look at each other, and determine that we will find a way. There has to be a way. We sign the paperwork, and we are letting the attorneys do what they do. This is our only option.
Today though... today added insult to injury.
I had been reaching out to the BCIR clinic in Florida. I wanted to have BCIR surgery immediately, instead of having an ileostomy, and then the BCIR surgery later as a second surgery. They are both long and complicated surgeries, with a lot of healing time involved. With an ileostomy bag I am not going to be able to be as physical as I was before all of these health complications flared-up. I want to be able to do Tough Mudder. I want to be able to be a nurse. I want to be able to be rough and tumble, and physical.
With the BCIR surgery done first I would be able to get there faster. I would be more "me" again sooner. I would have no concerns about a bag leaking or getting ripped off. I would have no concerns about my skin breaking down. That is actually a huge concern of mine. Band-aids leave me with rashes and scars that last for a year or more at times. I would have an appliance attached to me with adhesive ever single day.
The BCIR clinic called today to let me know that they had come to a conclusion about my treatment course. They want me to have an ileostomy bag first, as my bowels are in such a bad place. If the ileostomy bag works, then the BCIR will work later. I am going to have to have the bag for 6 months before they approve BCIR surgery.
Extra scars. I already have so many. We are now talking many, many more. Most likely opening me up from just below the rib cage, straight down, and ending at my pubic scar, sectioning my stomach in two halves. Not equal halves however, as the curve around the belly button.
I now have to find a doctor to do an ileostomy surgery. I then will have to care for an ileostomy for 6 months. If all goes well, they will decide how soon to schedule a BCIR procedure which I will then fly to Florida for. I will remain in the hospital there for about 20 days.
Every time I see another doctor it involved waiting 1-3 months to actually get in to see them, and then months of tests being repeated. They surgery gets scheduled out (because OR schedules are scheduled the month prior, and it is first come first serve) and you usually have to wait 2 months or more to be scheduled. We are looking at about 6 more months before I even get an ileostomy.
I need to feel better.
Will the madness ever end?
How will my husband feel when he sees the ileostomy bag attached to me? Will my kids be too scared to touch me?
When is it my turn for a day of pure bliss? I am starting to lose hope, and lose faith.
Today I shed my tears in private, and then I continue to smile through the tears that remain.