I'm not a fan of the PICC line. It feels as if I have a third arm, but I can't use two of them. Showers and baths have become really hard to manage. I wrap my PICC arm with plastic wrap, tape on top, bottom, and side, and wrap this water repeller thing around it as well. I try to stay away from showers because I end up just using one arm for everything and just exhausting myself. It's like my own marathon. The spoons used aren't worth it. Baths are more time consuming, but I can sit lol!
The first week on the IV antibiotics I was horribly nauseous. Like the kind of naseous you can't think, move, or breathe with. We finally found the trick to drinking ginger and rooibos tea, eating right before and after, taking a ginger tablet with food, and constantly wearing my sea bands (these rock! They are acupuncture point wrist bands. Black bands on both arms. I'm so cool ;). And a friend of the family's has been bringing me juices that have helped- and tastes great!
After that week the pain got really severe. To the point where I was up till 2am crying at nights. I was having horrible mood swings, dealing with intense anxiety and lyme rage. This lasted a couple weeks. My family are all saints walking this out with me! It was pretty difficult. I knew I was herxing pretty good cause when I herx I get terrible leg and lower back pain (my kidneys are fine. I get them checked weekly). Just hoping and praying the die-off is leaving my body, and the toxins are not reabsorbing like last month.
This past week I've been feeling flu like all day, and a couple hours after I finish the infusion I go down hill with pain, and neurological symptoms.
While there have been some symptoms that have been worse, I have seen a few positive changes. I sleep a little more. Not nearly as much as I should be, but I'm not up all night. I feel like my stuttering has gotten better. And instead of not being able to walk a lot cause I fall and have poor balance, it's more of knee pain, and just being stiff. While I do see minor positive things, there is still a lot of symptoms that have not gotten better. I just hope I'm herxing. Die Lyme! Die!
My home nurse comes once a week to change my PICC line dressing and to make sure all is well. I also go to labcorp for blood testing each week. Making sure my kidneys, liver and gallbladder is good. So far so good :)
Story Time:
So, the first week Dr.N gave me a sleeping pill and pain reliever to try. The pharmacist told me I could take both at night before bed with no problem. NO! She was wrong. That was a big problem. About 20 min into taking the pills I started hallucinating and freaking out. Finally threw up - that helped. Those pills need to be taken separate and one with food. That would have been nice to know before I was on a magic carpet ride through San Francisco with gorillas.
Then about a couple weeks ago I got extremely sick. Like I truly, honestly thought I was going to die. I started a new medication that we think did not mix with something I was already taking. After I threw up (that's always the trick) I heard Tanner say "why can't anything go easy for us." I like to think of it as another story to tell. I've got lots of medical related stories.
All along I have been told if air got in my PICC line I could die. I have been very careful with this. Seeing as I hate this thing and just want everything to go well and get it out! A couple days ago, right after I finished my IV infusion, the end piece of my tube came off! This is the piece that the IV, anti-blood clotting, and saline solution attach to. Which meant air was getting into my tube. I, like the rational Bekah we all know me as, held on to the tube with my right hand and held onto the broken piece with my left. I proceeded to run around the table screaming "I'm gonna die! I'm gonna die". This made my mom and brother start to panic as well. My mom calmly called 911 using two different phones. She reassured me I wasn't going to die and told me to put the cap back on. My brother stood in the room like a deer in the headlights. The EMT folks told me to go to the ER. The ER folks made sure nothing was broken on the line, pulled the air out and said all was well and I won't die. Not how I wanted to spend my night, but I'm glad all was well. And I didn't die! The good part was I was in and out in under 2 hours! Whoop! Didn't miss the last episode of 'Friends' that night either ;) maybe another time I'll tell you about the doctor who gave me the third degree about Lyme not being in CO.
I get to see Dr.N today. Looking forward to hearing what he is going to say. I can't wait to tell him all of my stories either ;) I feel like at the end of all of this I'll be one of his favorite patients. Not because I was easy, but because I always have interesting stories with my health! Hard to forget me haha
May is Lyme Disease Awarness month. Please Please Please take this month to do some reaserch on LD. No matter where you live, who you are, or your age- you can get it. It's easily misdiagnosed, and if not treated properly or in time it's deadly. You have to do the reaserch too. Don't expect your doctor to come up with LD and treat you. I got the 3rd degree from the ER doctor the other night. He didn't think I had LD after meeting me 5 seconds prior. Check out "Under Our Skin" on YouTube and check out the websit ilads.org. Lyme Disease is not something to mess with! It's the great imitator. And not just given by ticks!
Energy Expelled: As you can tell it's taken me a few weeks to write. Just been too exhausted. Took me about 3 hours to type out. Currently my hands/wrists are not too happy with me. I've got a pretty good headache with some neck and back pain. My chest is burning and tightening up. And I'm dizzy/nauseous. Nap time!
~ Today, there is still hope...
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