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Excuse me please, I'm tired of this disease

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Posted 1/6/2015 4:29 AM (GMT 0)
Please cross your fingers for me. I can cross my eyes.
Anyway, since I'm on IV nutrition, my port is always accessed. Since my port has also been having issues, I have a pic as well. Saturday night I began running a fever over a few hours. It got up to 103, but it went down quickly with Advil. Yesterday, normal temp until the evening, and then up it went-again. Today, normal, but right now 100.9. I was supposed to drive down to Duke (3hrs) tomorrow for IVIG. Instead, I will be going to the ER for cultures. I've had fungal sepsis 2x over the past year. I can't go to the ER right now because of the time. As soon as Nathan is on the bus, off I go. Please-no sepsis. It's scary stuff.
So @ 7:30 I'll head over for blood cultures. Maybe I'll get to go home until when/if something grows.
This disease sucks. Honestly, I'm pretty close to reaching my breaking point. A person should on be allowed to have one disease, one Dr., one source of pain. It's like I'm being selfish and hoarding everything, but I would never want to share this with anyone.
Posted 1/6/2015 7:48 AM (GMT 0)
OH friend, you're in my prayers. I don't know how you hang on but I admire every part of you that continues this journey. There are lots of viruses going around so maybe its not involving you'r port or PICC and that it can be managed easily.
I have had 3 ports removed so I understand the frustration...They sure are better than central lines and constant sticks.
Again, I hope this ER visit is SUPER fast, not hours, and that the "problem" can be solved easily. Keep up updated.

Can I ask for your first name if its okay to use it in my prayers? I know God know's who you are though, so I guess that's a silly question.

Praying for you son as well, seems like he's very mature and able to handle all this really well. You must be doing a SUPER job taking care of him, teaching him and loving him so well.

Post Edited (AngMichelle) : 1/6/2015 12:51:05 AM (GMT-7)

Posted 1/6/2015 8:27 AM (GMT 0)
Hey Rocky...What a heartwarming post from Ang...It brings tears to my weepy eyes.  I couldn't say "it" any better.  I'm sorry for all of these continuous burdens you must bear.  I also look to you for inspiration when I am feeling hopeless and alone in my disease(s).  You are a remarkable young lady who "shakes it off" in order to provide your son a loving mother.  I admire you.

BTW...I vote HELL NO to more pain and suffering for us ALL!  nono

Hugs to you and Ang~~Dixie

Posted 1/6/2015 9:15 AM (GMT 0)
Rocky, I agree with your suggestion that we do one at a time. Unfortunately many of us are 'overachievers' and get the sampler pack instead. I wish there were something I could say or do that would relieve your pain. I know you are usually the glass half full kinda gal. So when I see you flustered I just want to protect you in some odd way.
I know that even the most positive amongst us have a half empty day. If there is ever anything we can do beside typo back to you, please let us know. just remember we are here for you. hugs to that boy!

Dixie, I second that motion!
Posted 1/6/2015 9:45 AM (GMT 0)
Sometimes it does become too much to take, even for me, whose disease is invisible and not nearly as difficult to deal with as yours. ((((hugs))) from across the distance to you.

Try not to feel so guilty about Nathan. Think mind body connection. It's tough to do but we store a lot of tension in our bodies. Do you meditate? At first I thought it was stupid and hokey but now it works for me. It just centers me and makes it so I can put one foot in front of the other.

P.S. I can cross my eyes too. I just did it for you. <3
Posted 1/6/2015 11:06 PM (GMT 0)
Well wishes.....hang in there ❤️ hugs
Posted 1/8/2015 1:51 AM (GMT 0)
Ended up inpatient:(
One culture came back with a bacteria but they r waiting on the others. Also have a kidney stone and a UTI. I'm awesome!

Dr upped the oxycodone to 40mg scheduled every 6hrs so I won't have to ask for it. Still have the fent patch.

Hopefully it'll only be a few more days. Little man can't visit due to flu restrictions.
Posted 1/8/2015 2:55 AM (GMT 0)
Hey Roccky (and TN, too)

Roc...So sorry to hear you're in the "klinker" again, sweetie=(  I just hope you catch a break (and not the FLU) while inpatient.  It's everywhere! ((HUGS))

TN...My empathies with you, too, baby doll as I know you've been GRINDING through your pain.  From reading the first few posts tonight, 2015 is not off to a great start...((HUGS))

I always say..."Things can always get worse and invariably they do". Did someone say "Job"?

~~Dixie

Posted 1/8/2015 8:31 AM (GMT 0)
Well you already know I'm going to say that even though you hate it its where you need to be!! Sepsis is definitely Not a plaything!! Get your antibodies built back up and hopefully save your port and if you have to be inpatient at least its winter!
Posted 1/8/2015 8:30 PM (GMT 0)
It is nice that it's the coldest day of the year.
Getting an ultrasound today due to kidney function tests and blood in urine. Hoping nothing will be found. I don't think I can handle another area of pain or where disease is breaking down yet another organ system.

I just can't....I'll try...
Posted 1/10/2015 6:01 AM (GMT 0)
Picc line pulled and fever free. It appears the infection was isolated to the line, which is why my fevers would come and go.

Did get some negative news about the kidneys. Not a big surprise, but this monster of diseases needs to stop. It's just breathing down my neck. I can't slow down or stop, or it might catch me…

Right now, just glad to be home.
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