This week fatigue had a hold on me. A task requiring little effort takes twice as long. The extra effort is difficult for my multi tasking mind. Waiting on test results added to the stress. The doctor is making me wait until Sept. 19th to discuss the results. He gave me a nugget yesterday. I have Lyme, the co-infection Epstein Barr Virus and low Folic Acid. Requiring 2 new RX’s, for a total of 39 pills per day and 3 shots per week. The doctor surprised me with the Folic Acid RX, the red blood cell count was low. My grandmother could put all meds and supplements in one hand, throw them in mouth and swallow at one time. I am the opposite, one pill at a time shoved to back of throat, taking meds is a task. I’m not my best while being in limbo. I can hear gramps telling me, if you learn to enjoy reading , it will teach you patience. Mostly true.
If you have Lyme Disease a great book is The Lyme Disease Solution. My doctor uses as a reference guide. It’s spells out the two schools of thought on Lyme treatment. What a Lyme Literate doctor means and why it’s important to seek this type of doctor. The life cycle of Lyme and why it’s difficult to diagnosis. The different paths doctors may take to heal you, this is very detailed down to the names of meds used. I like the pros and cons of each treatment, it allows you to work with doctor on which is best for you. Some doctors go far beyond a Gluten Free diet, which is outlined. Hopefully my doctor won’t fall into extreme category. There are recipes in the book, they sound great if you cook. I have lived on the same bars, granola snacks, yogurt and cereal. I like Suja drinks, cold pressed, no preservatives, no sugar, all fruit including berries with high levels of antioxidants. Taste great, is expense. My husband eats some Gluten Free snacks, in general we eat separate meals unless I feel like eating meat or eggs. I have not found it difficult to transitions, down the road may be a different story.
This week I’m focusing on the effects of Lyme Disease. Outlined below is not a pity party. I think if people see what everyday is like it will stick with them. If one person uses DEET and doesn’t get Lyme, I will dance to the music. Don’t forget to check pets including cats or any other outside/inside pets. This in the prime time of year for ticks.
The information on Epstein Barr Virus was taken from CDC site. After you get an EBV infection, the virus becomes latent (inactive) in your body. In some cases, the virus may reactivate. This does not always cause symptoms, but people with compromised immune systems are more likely to develop symptoms if EBV reactivates.
*The bedtime set by the doctor is 9:00 PM, I have not made the bedtime yet. I think 11:00 PM is the earliest.
*My husband has to be home for me to take a shower. That crazy shower chair has caused me to fall twice. It’s worse when I close my eyes, get disoriented.
*One of the probiotics is liquid form to mix in drink. I can’t recall a med ever smelling so rank. I can’t breath when taking a sip.
*I take 3-4 pain pills a day, one taken at night to help me sleep. As a sleeping aid it’s awesome, the brain fog when I wake up is not. It takes a good thirty minutes to join the world.
*The fatigue and I have a difficult relationship. I can’t vacuum my office or much else. I feel tremendous guilt for not contributing to the household work.
*The edema hung around this week, up to my shins. The skin gets so tight it hurts, bumping into something is painful.
*Neuropathy in my hands along with Lyme Arthritis makes my hands very sensitive. My fingernail or pen can barely brush a finger and it feels like a razor blade. Both have little strength, causing me to ask for help. 😦
*I can’t tell you the last time I cooked or washed dishes, can’t stand that long. My husband has to do both.
*When I have a good weekend , I work on laundry instead of resting. Rest is hard, I feel totally lazy. 😦
*The guilt and other emotions can strain a marriage. 😦
*The unrelenting headaches can render you useless. All you can do is lay down, pray for sleep.
*I have ulcers in my mouth and nose, a side effect of one med. FUN!
*The amount of hair loss daily is depressing. Good thing I wear a ball cap most of time.
*Due to the level of inflammation in my body, infections pop up, this week it’s a bladder infection. So much fun!
*I stay positive even though I’m starting year five of being sick. A year spent on diagnosing Lyme. The remainder on heart issues. A lot of guilt builds up, it’s hard not to beat yourself up.
*In staying positive I think some new clothes are needed because I’m going to leave the house. It’s depressing to see the number of shirts with tags on them. In the big scheme I know I’m blessed.
*I have cut my hair for the past 8 months, good thing I watched my hair dresser. My hair is natural color with the grays out front. Why spend $125 on coloring and haircut when I don’t leave the house. Great use for ball cap.
*Reading lab results makes me crazy. I research every line, what does this mean, what is it connected to. I have worked hard not to play doctor this time. The time on internet is unproductive.
*A DNA test was performed. I didn’t know and a bit unsettling. I have gene mutations for two illnesses. I didn’t know what the gene mutations meant in detailed medical terms. WOW! Just seeing the number of doctors involved in verifying the result makes you blink. I did spend many hours learning about the mutations. I have to wait until appointment to see how the results impact Lyme or general health.