Home again, home again!

This trip was particularly trying after not having been on IV fluids for the past 2 weeks. As I mentioned before, I am on 2-3 liters of fluids a day intravenously; without them, my blood gets thick, my pain worse, and in this case—seizure activity starts up again. The ride down took a lot out of me, but fortunately I had a full day in bed to recover before our doctor’s appointment on Friday.

As it were, my blood tests came back clear, vitals better than ever, and the only concern (other than my port) was my thickening blood. Blood tests ruled out infection; the previous x-ray ruled out any kinks in my catheter, or the possibility of it disconnecting from the port hub; and given there was no heat or swelling over the area, we didn’t have much to go off of other than some significant pain. By powers of deduction, the next step is to see if it isn’t the fascia (tissue between the skin and the muscle) that is irritated. So, after a much needed check-up, we were sent back home to get some light massage of the fascia via cranial sacral treatments. If that doesn’t move things back to where they belong, and the pain is still present, we head back for surgery.

I have to admit, at first I was feeling pretty indifferent towards getting a new port in. Go ahead, just knock me out and slap another one in there! But as time has gone by, and the reality approaches, I have that sinking feeling in the pit of my stomach again. It is all rather vain, really, but my last surgery left me with a very noticeable scar; which, when covered by a gripper and dressing, isn’t very easy to see. The thing is, this time, if I need surgery, they can’t put it in the same place. If it is the tissue that is the problem (and not the port itself), then getting a new one placed there will do me no good. I will likely have to move to the other side of my chest. Now don’t get me wrong, I am all about symmetry, but in this case, I could really stand to do without. Not to mention how much worse my existing scar is bound to get when they go back in there, be it next week, or a year from now.

In the meantime, I was slowly regressing without my fluids, having not been able to access my port in some time. So until we get this figured out, it is peripheral IV’s in my arms again (they seem to last about 3 days in my weak veins before blowing out and/or needing a new one). I was able to get a really good nurse today who found a good deep vein in my forearm; which means less pain, more mobility, and a chance of lasting longer vs. placing one in the back of my hand or the crook of my wrist. And, she did a really good job of putting it in there. As far as peripheral IV experiences go, it was a good one. I have been slowly dripping fluids sans pump ever since (a pump goes too fast and makes it hurt…hopefully this will help it last longer, too, if I go easy on it).

I said to Matt on the way to the hospital today that it really was unbelievable how terrible I felt. It was a huge wake-up call for me—that I used to feel that badly on a regular basis, and how unbearable it felt in the moment. I am so grateful for how far I have come, and for The One who has carried me here.

Spirochetes: the corkscrew-shaped bacteria that is Lyme

I am still on a hiatus from IV antibiotics until this is all sorted out, which I am also sure is playing a part in how awful I have been feeling. The break has been okay, but it is about time we get back at them, and soon. Strategically, I think we are in a good place. The Lyme bacteria have likely unsuspectingly come out of hiding somewhat, without the presence of antibiotics, and when we do hit them with a new one, they will be hit hard!!! A few weeks ago I wrote about how scared I was for the Herx to hit when that time came; now, I just feel competitive, and ready to kill.

Thank you all for your prayers over this past week. I have been slowly trying to recover from our trip, and am hoping to faster now that I am getting a decent amount of fluid in me! Please pray that this would all be resolved soon; that God would give me the trust in Him, and the courage I need; and that I wouldn’t let fear or vanity dictate what is best for me or my health. Also, if an escape from surgery is possible, that there would be one.

Love and prayers back at you all,

Kate

“In the world you will have trouble, but take courage, I have conquered the world.”

John 16:33