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.
M
Looking for the Light 
And yet through all of this, you reach out to others. Your generosity of spirit is an incredible example Warrior 🙂 ((hugs to you))
Organic Kefir is very tasty for probiotics; I drink it regularly. Jarrow also offers a great one in veggie capsule form.
Hello my sister,
I don’t know how I would make it thru each day with out offering help. It’s the natural caregiver in me. Keeps my mind focus on positives and moving forward. I have not tried Keiffer but understand it’s the top of line for supporting the gut. My husband does all the shopping, I try not to throw him to many curves each week. This is very stressful on him. I’ll get there. I take three commercial grade probiotics including Jarro. My doctor was detailed in what brand of products to buy for all of my supplements. The one probiotic he is really high on is Lypo-Spheric GSH. It is liquid form and I put in lunch organic drinks. It’s one of the worst smells. Your comment gives me an idea to include the list of supplements taking. I have not looked at labs on your question but will look. Have a great holiday.
My prayers go with you as you struggle. Thank you for sharing and following my blog. Be blessed. Meghan
Dear friend,
Thanks for the kind words. I’ll take all the payers I can get. Have a great day.
M 🙂
Sometimes, if something smells/tastes nasty, I put a stick of gum under my nose and sniff before and after.
Thanks for sharing! 8)
Thank you, such a great idea. Have an awesome day. 🙂
Hello, Salam dear friend,
I am sorry to hear that you are not feeling well. Get well soon!You are in my thoughts and my prayers…May Allah (swt) bless you with a speedy recovery and good health…I also wanted to send my warmest wishes and prayers to you…..xoxo ❤ 🙂
Hi Twin, I hate that you are feeling so sick. I wish I could help you somehow. If you like the rain, you can visit me anytime (bring a lot of sweaters too!). I can cook gluten free recipes for you.
I know that feeling guilty and dependent is the hardest part of being sick but try to accept that for now you have some limitations. Today for you, tomorrow for me. You never know what could happen! If writing makes you feel better, do it! If you can’t do it, then lay down and dream. You won’t be forgotten :). We are here with you!
Hugs!
Hello Twin,
How can I come after you filled our tranquility pond with sand? If we stay in the house we’ll just work or get in trouble. Feeling guilty is ingrained, We talk about it often, he reassures me I should not feel guilty. That doesn’t change things. I’m a strong personality and I don’t want to be dependent on a man or anyone. I have to show I can do it. It’s not always the case, sometimes it’s not possible. I have pain pills and in the big scheme of things, this is the calm before the storm. I start antibiotics next month, that may kick my heavy ass hard. I would rather feel pain than throw up. Throwing up in front of somebody is one of my worst nightmares. Other than the jello thru nose incident, he hasn’t seen my vomit. I hope to keep it that way. Did you get the light fixture down? Are you buying an oven for the stove top? With a crew to cook for my guess is yes. Have a great day. Talk to you soon. Hugs,
Hi Twin, Yes, I had to ask the man to take the lamps off.. He did it. I managed to put the stove in its place! (without help!!).
The pond will still be there but with stones and one inch of water. I need it for my mental health. I don’t care if I had to place every stone by hand, I want MY POND and I’ll have it… Even if it’s fake. We can sit and watch the inch of water :).
Throwing up is horrible. I feel 10 times sicker after doing it. I’m not like those persons who throw up and feel so good that they start eating again.
When my mom was pregnant with me, she vomited EVERY single day. She vomited in her purse hundred times because she felt terrible about doing it in the middle of the bus or street. But the nicest story that she told me was the day she was invited to a wedding. She was sitting at a round table with 7 or 8 persons around. Then she felt really sick and didn’t want to vomit in front of the people, so she covered her mouth with one hand. But the vomit went out so fast that it passed through the fingers and went to everyone around… I’m still laughing. Poor woman, apparently I’m toxic since seed stage!!
And I just remember the little Oriental guy from the plane, he didn’t care we were watching!
I can deal with 1″ of water, we’ll pretend. We can reminisces about the pond before sand. You have photos of. The man is helping a lot, does he bitch the whole time? Maybe the reality you and the kids aren’t there anymore. So proud of you on the stove. The only part of remolding I like is tearing things apart. I dislike painting some bad. A straight line painting is impossible for me. I love the story about your mother at the wedding, what a great youtube video!!!! I got food poisoning while on a flight from Boston, when the bathrooms were occupied I had to use the bag. How humiliating had food poisoning several times, once threw up all over the dash of my new Land Rover. While drunk I thru up in two limo’s, that’s not fun,and they charge extra for that.
What color are you painting the kitchen? Did I see the kids tearing down wallpaper? You have a full team minus the baby,they can help. I hear the dinner bell, so off to eat Gluten Free chicken fingers!! Yum.
Hahaha, I imagine the dashboard of your car, also the two limo’s and the people sitting there after you, and I’m laughing.
The man is helping and sometimes bitching (his trademark).
We will pretend in front of the pond, no problem. But the drinks and appetizers will be real.
My most humiliating vomiting story was on a boat. I never had had bacon or eggs for breakfast before and I had the brilliant idea to eat them on the buffet of the boat. Then the stupid boat started moving and the bacon,egg and moves had a terrible effect on me. I said: I’m going to vomit! And I tried finding a bathroom and I saw the sign saying it was downstairs. Of course I couldn’t get there and from the seven step down, I left a beautiful trace. Thank goodness I was so sick that I didn’t even pay attention to the people around. My mom had to take the shame 🙂
Next time, another puking story, this time with the man on the leading role 🙂
I hope you are feeling better 🙂
I’m sorry you are experiencing such physical and emotional pain. I had no idea. I think you are showing courage in the face of such adversity. I know its easier said than done, the guilt, try being a little less hard on yourself, and a little more gentle. It sounds like rest is just as important as medication. I think with bipolar we are so used to pushing through difficult times. But this is Lyme. You deserve to rest and allow your body a time out to cope with the infections and symptoms. My thoughts are with you, M. 🙂
39 pills per day and 3 shots per week.
ouch
It’s usually gag!!!!!
I can imagine.
You have such a strong spirit…chronic illness affects the family, and it is a full time job! The longest I have had chronic pain was less than a year. It is not easy depending on others when we are usually the caregivers! Sending positive energy and prayers ❤
Hello Angel,
Chronic pain has taught me many lessons. The greatest is giving of myself eases the pain. Being a caregiver at heart, I watched two very independent people I loved become dependent. To old to understand how a message gets from one computer to the next. There wasn’t much to do but sit around. When I can’t occupy myself with something that rewards my sprit it is easy to focus on pain. I enjoy writing and somedays get the bonus of kind comments. The falling down and cracking my head open was not fun. The illness will get worse, I pray for strength and a way to still post. Taking all the pills is a F/T job. I hope this message finds you and the kids doing well. Have a great evening. Hugs.
I’m so sorry that you’re going through this. Hang in there! I had Rocky Mountain Spotted Fever a couple of years ago, which is pretty similar, I believe. And I thought I was dying – it was terrible. And actually, the medicinal cocktail they had me on kept me sicker for much longer than I should’ve been, it turned out – so watch out for that! Best of luck. Feel better.
Hello friend,
All tick illnesses are similar. I haven’t started antibiotics yet. I start next month, hear if can make you very sick. I video I watched looked like you get worse before getting better. I choose to think positive until my reality changes. Thank you for your comments and for visiting my site. I’ll take a look at your site tomorrow. 🙂
I only like this in support, not that I,like your situation…., god it must suck, I thought cancer was bad, my heart is with you and I will send some positive strength in hopes it gives you a smile when you find yourself low…..I thank you for getting your voice out there for things for people to watch for if not for this but for any anomaly with their body, I thought I was hitting menopause, glad I had an awesome doctor who didn’t let it go and 8 yrs later I am still here, but I hope you get some sleep and I hope you know we are listening and as tough as it gets, you’re not alone:) peace, love and the most healingist vibes I can send….Kim
Thank you Kim,
Your kind words lift my spirit. Thank you for sharing your story a Rocky Mountain Spotted Fever. I start antibiotics next month, that’s when the reality hit you. I’ll take all the positive energy I can get. So glad you came buy the site today. 🙂
🙂 rocked to Neil and Janice too, thanks for that:) sending smiles and light and I,wish it were Friday 🙂
Hello my friend,
Glad you enjoyed the music as much as I did picking the videos. Thanks for the comment. Have a great Friday. 🙂