It’s been a while since my first blog. I have spent the last 3 months sorting out the life, my life as a Lyme patient. The medication, the diet and the Herx reaction have kept me busy and at first exhausted.
Let me start from where I left off back in May with my first blog. My meds were gradually being introduced into my body as to not overwhelm it all in one shot. My doc was smart about that and I am thankful for it, but having said that, I still got the Herx reaction. I had read so much about the Herx reaction that I of course expected the absolute worst case scenario which of course didn’t happen. It started 2 days into my treatment when I was taking all my meds. It started with me waking up in the middle of the night room spinning, head spinning, waves of nausea (Gravol to the rescue) and chills. Not the kind of chills where a robe will do, one of those chills where I was under 3 blankets and in the middle of summer wanted to turn on the heaters. That was the situation for about 2 days, after that the symptoms decreased and the fatigue and exhaustion increased. In addition, all the meds I was on caused oral thrush. Think yeast infection in your mouth. It felt like I burnt my tongue badly which required more meds to resolve the oral thrush. That cornucopia of fun lasted for about three weeks. Then I started to feel better, slowly. Very slowly but it was welcomed and long overdue.
The Yeast Free Sugar Free Diet (YFSF) and taking all my meds and supplements was challenging. I bought a pill box for every day of the week (actually I bought two- I like knowing that I am organized for two weeks at a time). The pill boxes helped a lot. It keeps things clear when I am not. As for the diet, I honestly thought I would not be able to figure it all out. It seemed like a monumental task. As it turns out, it was not as bad as I had envisioned. At its absolute core – it’s just healthy eating. I even came up with my own culinary creations to keep my taste buds from causing a mutiny in my mouth. I will be posting my culinary suggestions and recipes soon. Stay tuned for that. My family have been pretty supportive of my diet restrictions. So far I have lost 21 pounds. I have currently plateaued with my weight for the last month. I am thinner than I have been in a long time (as in back in my late twenties) but I do not look sickly thin. In fact my family and friends are commenting that I am looking better. My mom commented that I looked like I had jaundice before but not anymore. She’s one relieved mother.
I had my 3 month follow up appointment with my doctor earlier this month and I have made a 15% improvement. I was nervous before my appointment. The kind of nervous Lyme patients are familiar with. Anxiety and nervousness have also decreased. I do not freak out as much when I am in a car. I do not drive but my husband drives. He could not understand why I would be freaking out so much when we were driving around. As it turns out constant anxiety and panic attacks are common for Lyme disease and its co-infections. Thankfully my panic attacks and anxiety are less....much less. It feels good to not have that knot in the pit of my stomach all the time. I had been fearful and scared of just about everything for so long that it feels amazing now that I am calm and my insides are no longer trembling from fear. I did put up a good front though all these years. Nobody knew. I didn’t tell anybody. I was too afraid that they would think I am nuts. My friends and family members know me as ballsy and brassy (or as my husband calls me ‘mouthy and demanding’) and I desperately tried to hang on to that version of myself not just for them but for myself too.
My joints are getting better. I use to have the most unbearable lower back pain from when I herniated my disk. That pain is gone. I used to have the worst congestion year round. That is, for the most part, gone. I can open a jar by myself now and my hands, arms and legs are not as numb as often. Nightly, I was woken up by numbness and tingling in my arms and hands. Now that happens occasionally
My chronic fatigue is much less and I for the most part am sleeping through the night. I have more energy. I still get tired but not as much as before.
My bad mood otherwise known to me as a permanent state of PMS is for the most part gone. It went bye-bye along with my short temper. My husband commented that I am pleasant to be around now and I would agree with that. I hated being around me too. I hated being moody and short tempered. I think tempers are great under certain conditions but not all the time. It is exhausting.
Dry skin is still a problem but as Lyme patients know some symptoms of this disease are migratory. I have dry skin some of the time - usually the last week and the first week of every month. Since I have more energy I actually made homemade glycerine soap. Glycerine soap is excellent for dry skin and it’s gentle on the skin as well. I made it completely organic. Even the coloring dyes are made from steeping herbs and spices in oil to create the colors. I made an orange marmalade, lemon zest and oatmeal scented soaps. Actually the oatmeal one is unscented but great as a body soap.
My memory is improving. Since the summer of 2010 my memory had gone to a land far, far away. When I would watch True Blood – I couldn’t remember what I saw the week before. Thank God my best friend was there to give me weekly recaps before we sat down and saw the current episode. The day I was able to remember something that happened on True Blood the week before was the best feeling I had in a long time. My memory is coming back. Slowly.
Slowly seems to be the only word to describe Lyme disease recovery. My doc said that the recovery is long and slow and there is not anything that can be done to hurry it up. Patience has never been my thing. I have always been the champion of impatience. I am learning slowly to cool my heels and as my husband is fond of saying ‘life is a journey not a destination’.
Until next time- stay tick free and toodles for now.
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