When I first started treatment and was in the pits of herxing hell “Love Alone is Worth the Fight” was my mantra. If you’ve seen my hashtags of my photos with this now you know why. We have one life God graces us with and I want to to well…live it well. If I have just a moment of feeling good I want to go out explore His world, see/make art, play with my children, eat great food. Even if I don’t feel great I still want to make good use of these minutes. When you have a chronic illness you don’t know what or when your sbility to live it well is going to be diminished. So anyway how have I been feeling? Let’s break it up in segments. I’m about 2 years into treatment..
I felt great, like for real like old me. My head was clear. I had my rainbow baby, my vbac…amazeballs for lack of a better word. I probably overdid it. I had a little BP issue at first. That was strictly post pardom issue and my OBs told me to rein it in and did. So I continued to feel like old pre-Lyme me. My Lyme doc had mentioned at my last appointment sometimes delivery resets the immune system and I was hoping that’s what happened.
4 weeks in and when it went bad…
On about a Wednesday we found out my In-laws would be there that same weekend. They stayed Locally in a hotel which helped the last minute visit. Having someone to run around with R was great..the ramification of the visit was that when they left immediately my husband had to work on a paper that was due on Monday. So I was full on duty with the kids and house 4 weeks post pardom. Well at least the next day me and the kids could blast the AC watch movies and have a jamma day???? Wrong. My son woke up with an epic stomach bug. So I had him on the other side of the room trying to not get my little little baby sick. Up and down the stairs I went laundry, cleaning floor, mask on, scrub hands, nurse baby, eat a protein bar, play nurse rinse repeat… I think one day I earned the sky scraper badge on Fitbit. Two days later hubby came down with it. So they went downstairs and I was fully in charge of everything for two weeks. (Hubby was better in a couple days but R took two weeks and we didn’t want baby to be sick so we were overly cautious. ) it worked she never got sick.
Right after that we rolled right into move prep. At the time I was still reintroducing Meds back in. I was cheating on my diet here and there . I cleaned that up and made sure to rest when I could. So I was “moderately functional but not fully present” if that makes sense. I had one of my best friends visit and that was just wonderful, gave me a little pep in my step. I had family come visit to help and visit when my husband went out of town for work. I did what I could and had help but it still was probably more than ideal for a Lymie post pardom.
Trip back home
Seeing we were about to be moving a an ocean rock so far from family and friends we planned a trip back home to visit. We also were planning a baptism. There was some drama that was out of our control that ended up adding major stress. (Remember stress being a major flare inducing trigger for me?). Thankfully the joy of seeing my family took away from that once we made it. My son did end up picking up a nasty virus while there unfortunately..
That was uber stressful. My husband last minute changes plans and dropped the dogs off at the pre-flight airport hotel. So I was stuck at the hotel with a sick four year old, baby and two dogs for more of less two days. Stresssss
Aside from the delayed flights that made our awake time over 26 hours we made to and the kids were great on the flight. Of course it wasn’t all fun we did have basement laundry time and had to deal with limited space but overall it was nice. I ate well, had some good vitamin D time, exercised when I could, listened to music. I felt pretty good. Some highlights:
Hawaii is expensive right..well duh. Our rental car needs to come out of pocket, our car was still on a boat…We find out then that if we don’t sign a lease asap in town we are going to be offered base housing on a different base than my husband works and we decline we will lose than money we have to live on during travel. So we did non stop house hunting. Prospects weren’t good…small (like our furniture wouldn’t for small) no AC (remember Lymies often have heat intolerance). Finally we found a house in our desires area. No AC but they would allow window units, nice breeze , fruit trees. Another family put in an application much like last year in VA but we got it this time.
What’s a lymie’s biggest fear moving to a humid environment???? Yup you guessed it. MOLD. Mold illness in itself is a big deal, when you have a chronic illness it creates a myriad of problems. Upon moving in I would break out into hives, my heart rate would drop dangerously low at night, the following day I would be dizzy and out of breath. Sure enough I discover a couple areas of mold/water damage.
Our landlords are wonderful and took care of things right away. I wasn’t surprised. This home is gorgeous and you could see the care they took in it. The fridge was an easy fix. The bedroom however was not. Their builder flew out from the mainland and had to fix the shower that was leaking into the master. After that he had to clean the mold. The antimicrobial stinks to high heaven. Even my hubby who doesn’t have a great nose is bothered by it. To the point we are waiting on a shipment of an another air purifier before we can sleep in there, or attempt it at least. (Ps the Germ guardian air purifier is awesome. No hives since then).
Some more low lights:
- Broken washer. The delicate cycle is broken, even worse is that it Russian roulettes bleaching loads of clothes (we don’t use bleach) who can afford to replace entire wardrobes? New one thankfully coming end of month.
- Being a one car family for long while. I’ve used my car three times total while living on island. The lack of independence and feeling trapped is tough. Thankfully my husband got a new to him car recently.
- My son’s pre-k was full…and then week before opened a spot up. Great but stressful seeing opened up just days before day 1.
- Dogs are being eaten alive by something. They have spots gone on their fur. They are on preventatives, had extensive check ups before we left and are bathed regularly so who knows
- Holter monitor while nursing in the heat is rough…
- It’s HOT so very hot. No AC is tough with a chronic illness. My neighbor who has been here for ten years says its abnormally not this bad.
- Thanks to the folks no disconnecting my car battery it corroded and died last week right before I was to pick son up at school. So back to not driving
- Just being unsettled for this long. It seems like Lyme treatment where one problem is solved ten more Pop
Highlights: I am grateful for a lot. Every morning that I wake up, my daughter is healthy and thriving, my son is loving school and my husband is “home”. The place is gorgeous, people are so friendly and someday I’m sure we’ll laugh at the time we weren’t really feeling the aloha but no is tough. My health is really compounding that.
Symptoms now: My left leg is covered in KT tape/tons of pain, on/off dizziness that occurs mostly at night, some headaches, anxiety, brain fog, brachardia at night, fatigue, some depersonalization, had one day of fever. I need to amp up my treatment soon.
I’ll hopefully update this more frequently. I keep my Instagram very up to date if you want to follow my progress or regression… Here are some highlights in picture form: