There will be times when things are not going well for this blogger who is supposed to be supporting all of you out there who are suffering from chronic illness. As I battle with my own news of bad lab results, new medications, horrible side effects, not enough energy to walk to the bathroom, concerns about my future and mental hardships about the path my life has taken, I sometimes have to take some time out to focus on my own healing. That’s why I haven’t been posting as frequently lately. I am having trouble seeing the forest through the trees.
Please understand that when there are pauses in the blog entries it typically means that the you-know-what has hit the fan around here and I will be back to you as soon as I possibly can. I have needed these past few days to “check out” from reality and lick my wounds. My blood work came back from the doctor with an indication that the Lyme is increasing its intensity in my bloodstream and my bone marrow is not producing the cells that I need to fight it anymore. The aggressive treatment over the past three years seems to have put me into a degree of bone marrow suppression which lowers my ability to fight off ANY infection, decreases my ability to carry oxygen (low red blood cells, hemoglobin and hematocrit) and reduces the amount of platelets in my blood so I bleed very easily. Obviously, this was all very concerning.
I knew that it was time to change some of my treatment. I have been on a serious decline since March of this year when I was forced to stop my IV antibiotics because I developed severe tachycardia (fast heart rate) and I had lost weight down to 97 pounds. My body just couldn’t handle any more abuse. I had stuck it out for three grueling months of daily IV antibiotics and I wanted to accomplish six months or more but my body decided otherwise. I was switched over to IV fluid for hydration and daily IV magnesium, supplements to make me stronger, a pill to put weight on me, a thyroid pill, a heart pill to slow down the rate and a different pill to help my adrenals function. We had switched gears to helping my body recover and the Lyme took a back seat.
I still continued one oral antibiotic a few days a week just to keep the bugs under control but now we have to stop that one too. We are going to resume an entire treatment plan that we did during the first year of my disease. I will be eliminating every pill that is not completely necessary. I will go back on injections of Bicillin LA (antibiotic) once a week because that is all my body can tolerate right now and it seems to really work for me. I will start taking Doxycycline once a day if I can tolerate it and I will detoxify my system heavily.
I will continue to keep the IV (PICC) line in my arm for hydration and magnesium but we want that to come out as soon as humanly possible so I don’t get an infection. Knock on wood, I have had it for seven months now and I have been very blessed to have no issues thus far. I am extraordinarily careful with my line so it’s not just “luck” that has gotten me this far, there has also been extremely vigilant care involved as well. I saw too many line infections during my career in medicine and I don’t ever want to go through that!
For those of you with PICC lines, these are some of my suggestions for great line protection: I always wear a mask and gloves when I do my daily flushes or hook up my line. I clean my ports with three alcohol swabs in succession before I attach my first flush syringe to it, then use an alcohol prep between each flush syringe ~ line hook up ~ putting the cap on at the end. I never place my syringes on the table outside of their plastic packaging (even if the table is clean or even if there is a drape down). I open one side of the packaging just enough to get the plunger out but I leave the capped end in the sterile plastic sheath until it is time to pick it up and uncap it to attach it to my line. I never let go of my line port once the cap has been removed, EVER. It cannot touch any surface. I don’t let my IV tubing touch anything. After I have primed the line with fluid, I put the capped end that will be attached to my arm back into the sterile packaging that the tubing originally came in and I lie it on my prep site until it will be ready to be uncapped and attached to my port. If it were to touch anything, I would throw out the entire bag and tubing set and start all over. I refuse to get an infection.
These safety measures are the most important… I NEVER let the dog in the room when my materials are set out on the table or when I am doing this entire process. Regarding pets, the dog is rarely in my room, never on my bed and the ideal situation would be for you to do all of your line care in a “clean room” where no pets have ever stepped foot in the room but this is not realistic in most households. Just keep them out while you have your supplies laid out, while you are hooking up your IV, unhooking your line or most importantly while you are changing your dressing. Lastly, I don’t even run the overhead ceiling fan while I am hooking myself up. Have you seen the dust that rains down from those things? Anything that can blow down on you from either a vent or a fan can contaminate your line.
PICC line protection is so important and it can be very tempting to get complacent with how we do our daily maintenance because we are so exhausted that we can barely sit up in bed some days. However, I have witnessed what septic shock looks like and it ain’t pretty folks. Do it right the first time and you will save yourself hospitalization, surgeries, high dose antibiotics, months of recovery and possibly even death.
I know that showering / bathing has been the biggest headache of my life for the past seven months. So for the lay people reading this, here is what I have to go through just to take a shower: First I lean over the edge of the tub and wash my hair under the spout because I can’t get my left upper arm wet. This is a two step process of shampoo and then conditioner due to my long hair ~ dang it. Then I have to sit in a chair and rest. Next I wash my face, neck and ears at the sink. I comb out my wet hair and put it up in a cap.
Then I wrap my left upper arm in Glad Press and Seal plastic wrap, tape down the edges with paper tape and cover the whole thing with a sock that has the foot cut off it. I draw the bath but it can’t be more than lukewarm because it will make my heart rate increase. I sit in the chair and rest again while the tub is filling. Once I am in the tub, I wash from the neck down with just my right hand while my left arm is held up on the ceramic soap dish, supporting me so I won’t fall from weakness and secondarily so it won’t get wet . I rinse off in the tub, stand up while draining the water, grab the handheld shower nozzle and turn on the water to rinse off with clean water. During this time, my left arm is holding onto the towel bar in the shower because I am too weak to stand up. On really bad days, I sit on a shower chair. When that is done, I get out of the tub, dry off, remove the plastic wrap contraption from my left arm and pray that the line didn’t get wet. I usually have to sit down and rest again before I can finish up with getting dressed and cleaning up the bathroom. This whole process can take up to an hour and a half to accomplish. Fun eh?
Just trying to live day-to-day with this disease is difficult enough. The past week of discouraging news, more changes to my medications, a “testy” doctor’s appointment which brought me to tears and the knowledge that I am now going into organ system failure was almost enough to break this woman. So, I did what I usually rely on when I need to lick my wounds. I crawled into my cave and I started reading everything I could get my hands on to support myself mentally, emotionally and spiritually. I have always believed that knowledge is my power, kindness is my purpose and patience will see me through anything.
Even though I can’t see the forest through the trees right now that is ok. I don’t want to be in the damn woods anyways. That’s where the ticks live.