One more sleep. I’m packed except for my pillow and my toiletries. I don’t go back to work for a month — I realized today that I got my first job at the age of 14 and since then I’ve never not worked for a full month. It’s crazy! For those of you who don’t know me — I’ve been an esthetician for over 23 years and own a wellness center. Today I saw 7 back to back clients with no break. Exhaustion isn’t even the right word.
Came home and had to finish packing. Before I could finish I needed to access my port. For those who don’t know what a port a cath is, you’ve probably seen it in cancer patients as that’s generally how they get their chemo infusions. When oral medications didn’t work on me after 5 months my doctor agreed to let me get a port so I could start infusing Rocephin which is a pretty powerful antibiotic. Most Lymies get a picc line which goes in their arm but because I work with my hand and my arms the greater chance of me getting the tube stuck on something and ripping it out an causing infection. So I’ve had my port since end of August last year and it’s served a purpose. They agreed at Stemaid to use it to infuse my chelation drugs as well as the daily infusions of stem cells but the doctor asked me to come already accessed meaning I have a needle with a tube hanging from it. During the 4 month period last year when I was giving myself daily infusions of Rocephin I stayed access with a tube coming out of my chest for six days a week and would take the needle out myself (deaccess) Sunday mornings after infusing and then take Monday off so I could lay on my stomach and get a massage and best of all take a REAL shower and I was only able to take baths as the cord cannot get water in it. The tubing connected to the actual port is placed over my clavicle and goes directly into my jugular vein. Anyways when I was on Rocephin, I had a home health nurse come to my house every Tuesday morning at 8am to access me. If you’re lucky like I was, insurance will cover the nurse visits but now that I’m not on antibiotics anymore I have no nurse to help. I’ve been seeing a hematologist since Fall of last year and I generally see him every Wednesday for infusions of supplements so his nurse is accesses me. But I haven’t been in 2 weeks and needed to learn how to access myself — thank you YouTube!!!
I watched a 20 minute video and then began setting up the bathroom with paper towels, supplies, my sterile kit, etc. It’s incredibly important to create a sterile environment otherwise any bactertia that gets in can go straight to my heart and kill me. My husband who is beside himself because he basically lost his fun loving wife a year and a half ago was trying to be helpful and started to grab the roll of paper towels. I firmly and very quickly said “don’t touch the paper towels!” When y’all get a chance google Lyme Rage as it’s a real thing. Anyways he took my firm tone of voice as me “barking at him” and to make a long story short all hell broke loose. I don’t do well with anyone yelling at me or anyone else — old childhood triggers I suppose. In the past I could keep my cool but since my anxiety is through the roof between seeing close to 70 clients in 2 weeks and packing and trying to raise the rest of the money for my treatment which is due in a week and a half AND weaning of Lexapro over the last 2 months — it’s fair to say I’m a little hyper-sensitive and have a very short fuse. The minute he raised his voice we were off to the races and not the fun kind. It was pretty ugly and ended with him going outside and me bawling on the bathroom floor.
THEN I realized I lost the tegaderms I purchased last week — they are a sticky protectant film that goes over where the needle goes in to make sure zero moisture or bacteria gets in. Anyways while I was searching for the tegaderms, I was so f’ing anxious that I decided to take a Klonopin — I’be been on a very low dose a.m. and p.m. for almost 16 years to keep my anxiety and panic attacks at bay. Well as “luck’ would have it I couldn’t find the bottle — my brand new bottle filled by CVS last week. That was the final straw and i found myself on the bathroom floor yet again in tears. With the last bit of emotional strength I had left for the night I picked myself off the floor, washed my hands really well — doctor style — and then created my sterile envirnonment (I had finally found the tegaderms) and set up my sterile kit, my needle, my saline and heparin, the little connector attachment to the tubing which allows me to screw on the vials of heparin and saline and anything else I need to infuse. So for the first time without a nurse’s supervision -or anyone’s supervision as husband was doing his water the lawn therapy, I stood in front of the bathroom mirror, donned my sterile gloves and mask, wiped my port down three times with betadine swabs and proceeded to stick a nice long needle into my port. And thank G-d I got blood return right away when I added some saline — success! This is yet another thing that no patient should EVER have to to on our own but because insurance companies refuse to acknowledge chronic late stage Lyme exists, most of us live in the Wild West fending for ourselves and praying we don’t kill ourselves in the process. But I feel empowered that I did it on my own and got it in succesfully on the first try. By the time I finished I had another good cry on the bathroom floor — yep my eyes got a good flushing as well tonight. But once I released all the feels I suddenly remembered that I had put my bottle of Klonopin in my carryon tote bag this morning and left a couple out to get through tonight and tomorrow morning. Did I mention yet that a huge symptom of Lyme infection in the brain is loss of memory? This was a typical thing for me but because I’m addicted to this medication that I hope to begin weaning from over the next few weeks, I went into a complete panic attack because I would’ve gone into withdrawal without it. The good news is I found it. And I’m nearly done packing and I’m in bed letting it out on my laptop.
I’m ready as I’ll ever be. The dogs are snuggling with me — husband is in the other room and I don’t know when we’ll speak — maybe not till morning. Can I tell you how many relationships and marriages have ended thanks to this disease? Praying I don’t become a statistic but it ain’t looking good for us. But I can’t even spend energy worrying about my marriage as my number 1 priority is getting me healthy so that I’m in a much better place to make life changing decisions when I return. Right now I don’t trust my brain as it’s too infected.
I’m fading fast my friends — thank you for the follows and would love to hear your comments.
Tomorrow from Cabo — or the plane!!!