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.