“When things go wrong as they sometimes will;
When the road you’re trudging seems all uphill;
When the funds are low, and the debts are high
And you want to smile, but have to sigh;
When care is pressing you down a bit-
Rest if you must, but do not quit.
Success is failure turned inside out;
The silver tint of the clouds of doubt;
And you can never tell how close you are
It may be near when it seems so far;
So stick to the fight when you’re hardest hit-
It’s when things go wrong that you must not quit.”
Today has been filled with much frustration. I woke up to my own screams of pain and found out why I was in pain (not from the continuous migraine I seem to be experiencing and have for the past few days). I am in the middle of a bladder infection which proved to be resistant to the medication I was on for the past THREE days and when you couple that with a neurogenic bladder you get a bed wetting situation. Luckily the pain of urination brought me out of sleep early enough to leave only my clothing needing washing. I was then later made aware that my medication was changed and we are hoping this will finally start controlling the bacteria. Based on my last infection, I am on guard in case this bacteria translocates to my kidneys or once again goes septic by infiltrating my blood. Until the bacteria is gone, this will remain a very big and scary possibility. Not only do I have that as a risk of infection (uh, already infected but contained within the bladder) but my surgical wound where they placed my portacath is still continuing to drain. NONE of my other ports or piccs had pockets of fluid that required draining but this one, for whatever reason, is draining. Not a little bit either, but a lot. Enough for every access to require pressure to get it all out. Fact is, my body will just replace it with more fluid; fluid that when accessed is trapped in that same pocket my port is in and become infected.
I had my portacath checked on Monday (4/2/12) to make sure it wasn’t the port itself, that was leaking but after a five hour stay at the hospital, blood cultures and hours of Facebook later, we determined the port is working perfectly and hasn’t moved out of place in any way. So now we just associate the leakage/drainage to the surgery itself. I might have mentioned before but the recent port placement was harder on my body than usual. It has been swollen and bruised and tender since first placed where none of my other ports swelled or even bruised. But with this one you can see it bruising so badly that you can follow the catheter right up my neck and back down again.
With these risks, I guess I will box myself up at home and hope that no infection comes to me because I’m a walking hotel for bacteria right now.
This isn’t the only thing that has me frustrated though. I don’t often get frustrated at tests or the consequences thereof, but what has me frustrated is the stuff that I can’t do right now. I’m still recovering strength, stamina and energy from my brush with death and because of this, I can’t do what I want to do, I can’t do what I need to do and I can’t do what I will want to do in the near future. It is STILL too cold for ME to go outside and walk around. I still require a lot of sleep or I end up cranky and make posts like this. I can’t do much outside the house or I get sick from exhaustion and for whatever reason, my body’s sleep cycle is all wrong. I blame the hospital visits for that. I do what I can at and through the computer. Connecting with friends, making phone calls for appointments or just to say hello, I snuggle with my Ellie and look forward to the few hours my husband is home from work for some real person interaction.
I know it will get better. I know I will get better. I won’t drop the diseases that I have already been diagnosed with but I will get my strength back, my energy back and maybe a little part of my life, dreams and inspirations back. I’m just frustrated with how long it is all taking. And I don’t think I’m the only one frustrated with how long it is taking. Maybe once the infection is gone I can feel less sick and crappy and start doing more but for now…nothing is looking too hot.
I don’t like ending posts on a negative note so let me find a good picture. I have employed Ellie as our transporter of things from upstairs to downstairs by linking it on her collar and calling her around the house. Need your hair gel and you are upstairs…no worries. Wish she could carry the space heaters up and down the stairs. Now that would be an invention.
I had to throw this one on too. A friend’s nursing school class went green for Gastroparesis. I was in the hospital that day but this really means a lot to us. Seeing support from those who do not suffer offer hope that someday, we will be recognized as we should be and a cure or more reliable form of treatment be found.