I find myself in a very dark and foreign place. This constant battle of trying to be healthy is wearing me down. My spirit is crushed and my confidence is gone. Would it be so bad to give up and let illness take it's victory?
How much more can my family take? I see the strain on them, the chaos it causes. The disruption to our daily schedules. I hate it.
What would happen if I didn't fight next time? If I bowed out gracefully and said I'm done? Would it make things better or worse? Surely, in the end, all would adjust and move forward...
These are the questions running through my head. I'm being point blank honest here. I am tired. I am ready to be done with this invisible illness that wrecks havoc on our lives.
I don't know if I have the strength to go through all of this again. And there will be a next time. If anything is a sure bet, that is it- there will be a next time.
What happened to that girl who was so strong 3 years ago? The one who almost died and came back with a purpose? The one who 1 year after nearly dying ran a half marathon? I can't seem to find her. I miss her. I need her to come back. I need her strength and determination.
|Twisty Bowel below stoma that had to be removed surgically.|
If you are wondering why I am having this little pity party, let me recap the last 9 weeks. I've been hospitalized 4 times for a minimum of 5 days each. On the 3rd hospital stay I had to have surgery for a twisted bowel which resulted in a new stoma and a 5 inch incision vertically through my poor belly button. I think my bikini days are over (like I wore one before, ha!). This kept me in the hospital for 2 weeks and as an added bonus, I had the pleasure of an NG tube. When I was finally released, I was overjoyed about being home and on New Year's Eve no less. I was excited to start the new year and put all this behind me. I still had quite a bit of surgical pain but that was nothing compared to that stupid twisty bowel!
|NG tube and all it's glory.|
|5 inch incision and new stoma|
My cousin was getting married January 10th in El Paso and I had a plane ticket and hotel reservations to go. It was a great excuse for a mini family reunion and I was really looking forward to it. I flew down on Thursday and enjoyed being with everyone but Friday night, things took a turn for the worse. I was up and down from about 3 am emptying my ostomy bag because of extreme diarrhea. Being an ostomate and having diarrhea is a very serious condition. I was losing more fluids than I could take in and began to dehydrate. Needless to say, I spent Saturday in the ER with my mother by my side. My electrolytes were way down and I started having several issues, cramping, rapid heart beat and nausea to name a few. After an IV, pain and nausea meds we thought I was clear to head back to the hotel but we only got a couple of blocks away from the hospital when I started vomiting. So back to the ER we went and I was admitted and submitted to various tests to try to determine the cause of this mess. I spent 6 long days in the hospital with no real answers as to why this was happening. I had about 5 docs working on my case and the consensus seems to be either a virus or the new stoma and bowel are extremely sensitive. Evidently, a bowel reconstruction of this sort can cause severe diarrhea and nausea because it's very sensitive so add to this the fact that I was out of town eating out 3 meals a day and it makes sense.
The Saturday that I spent in the ER my mom was with me and I've never been so grateful. She was my true advocate since Shannon was still in Amarillo. She sat at my bedside in uncomfortable chairs first in the ER and then in my room after I was admitted. She didn't sleep at all Saturday night which is a big deal. She has MS and rest is vital for her too. My dad had an appointment for cataract surgery on Tuesday which he rescheduled so they could stay with me in El Paso. I missed my flight home on Sunday and mom and dad were prepared to stay with me as long as needed. When it became evident that I was not leaving anytime soon, Shannon headed down Monday morning to relieve my parents. Shannon stayed with me only going to the hotel to sleep at night. I'm not sure what I did to deserve such an awesome hubby and family but I am so very grateful!
The docs had a hard time trying to lessen the output of my new stoma. In a 24 hour period my output was a little over 4 liters (a little over a gallon for the conversion challenged like me). That's about 3.5x what it should be. Not to be gross but that 4 liters was pure liquid. Normal output is more paste like or a watery oatmeal consistency. Yes, I know--gross. So when you add vomiting to this equation you can see how dire the situation gets. I was not only dehydrating but I was also loosing valuable nutrients and minerals like calcium, magnesium and potassium. My blood pressure dropped and stayed extremely low, like 79/48 which was distressing to the medical staff. It wasn't until they were able to control the diarrhea and I no longer needed pain meds that my blood pressure began to rise. This was one of the major factors that would determine my release. Slowly I began to stabilize, output returning to normal with the help of several meds, nausea fading and blood pressure rising giving me the OK to head back home. Side note: the care I received at University Medical Center of El Paso was top notch! BSA could learn a few things from them. It was by far one of the best hospital experiences I've had next to Scott & White in Temple.
So here is where my pity party kicks in again. You may not agree with this but like I said I'm being point blank honest here. With all of this illness/hospital mess came stress and inconvenience for so many people. Poor Shannon is on the verge of a breakdown himself as he feels so helpless and overwhelmed with our situation. My parents are juggling caring for their aging parents and now me too. Our boys are in limbo and the uncertainty is hard on them too. Thomas has been passed around to various friends during all this. I just feel guilty for causing so much chaos really. Chaos seems to be the best description. I look like death, my skin is pale, eyes sunken, cheeks hollow. The weight I've lost over these 9 weeks is not flattering. I look sick. I look frail and I feel it too, both mentally and physically.
I'm a little shell-shocked myself. I feel like in the blink of an eye I will be back in the hospital. I'm a bit obsessive about any little symptom my body may give. I even worry when it's acting like it should. This is not normal! I want to go back to living life but this paranoia won't let go. I'm tired. My well has run dry.
What do I do now?
Where do I go from here?
How do I get back to life?
What happens if I don't find the strength again?
This blog is a journal of sorts, it helps me clear my mind. Seeing words in black and white has always been a coping mechanism for me. I know this post sounds bad, that I'm on the edge of a cliff waiting for the right time to jump. Be assured, that is NOT the case. I would never want to do anything to cause my family and friends more pain. I am only emptying my thoughts and struggles as a way of cheap therapy. I just feel swept out to sea at the moment and the current is strong. I want to live and enjoy life again I'm just so tired of the struggle.