On This Thanksgiving Eve

On this Thanksgiving Eve I find myself in more need than I was in even a couple days ago;test results that say I have a longer treatment protocol ahead, loss of a job that turned a small income into zero….

but that said, I find myself full of thanksgiving and gratefulness. 

I have the love and support of God-given friends that are blessing me in words, prayers and deeds. I am being exhorted and reminded where my treasures lie.

I am in a very sweet place with the Lord where things have been stripped away and I am left to see who I am in Him, the inward growth that I have attained, and in surrender and making myself available for whatever tasks He has for me to compete I have such peace.

I also recognize the sovereignty of El Elyon and that nothing happens outside of His plan and purpose. There is such peace in this! I am at the best place I can be by humbling myself and being available for what He has next.

a very Happy Thanksgiving
My Lyme Fund

A Lyme Quote Might Be In Your Grocery Store

Have you found this on the shelf yet? Check out the Trilogy flavor of GT’s Kombucha!

  
Why is this so cool? It’s not just that something I wrote got on national shelves. It’s cool because this is something I wrote years ago while sitting in my doctor’s office, during one of many appointments over the years in this Lyme fight. It went on an erasable board in the exam room with other little quotes from her patients, and it’s still there years later.

Like many people who get diagnosed with Chronic Lyme it is a multi-step emotional process; denial, grief, acceptance, fight. 

This isn’t true for everyone, and maybe not in that order, but we all at some point (hopefully) reach the point where we face it and fight. 

So to my fellow Lyme Warriors and Invisible Illness sufferers; every time you see this on your Kombucha, its for you.

And for those that are able to either help and/or share, I can’t do this alone: Lyme Fund

Is Lyme The 5th Dimension? Or, The Facets of Fatigue

I woke up just a little bit ago from what has become the usual afternoon nap, feeling heavy, toxic, groggy and doped up. I have that lingering feeling of fatigue that sleep does not seem to reach.

When did I become a napper? Even in the worst of my Lyme I have never been a person who can sleep well in the middle of the day; that constant buzzing brain activity keeping me awake no matter how tired I am….that brain that even keeps me awake during the night when my sleep-deprived body is trying to shut down. I am trying to remember when that changed, sometime within the last several weeks or months I think. I know that the last few weeks at work I spend the day caffeinating myself within an inch of my life and counting the hours until I can go home and crawl into bed.

I guess the good part is that I have also for the first time in my life (without ambien) been sleeping better at night as well. I think it is thanks to an extra dose of this little guy on top of my Zen, prescribed by my ND  

 
Who is a genius by the way. I have had trouble sleeping since my body entered this mortal toil.

In any case the Lyme journey is interesting in that you realize that there are not enough words in the English language for fatigue; I have had deep discussions with fellow Lymies on this subject and we seem to be in agreement. Fatigue is now a catagory with at least half a dozen subcategories, or levels if you will that you can start to identify by their nuances, kind of like the 10 point scale an RN gives you for pain.
*(Please note; all levels given here still fall under the catagory of “but you don’t look sick” and “you must be feeling better because you look well” by the outside world, who do not understand Invisible Illness/Pushing Through/Trying To Function Despite and My Good Day Would Be Your Sick Day.)

1. 😐 Meh. Getting by, managing, functioning, but underlying malaise and general apathy which can easily be disguised and overcome with a smile. 
2.πŸ˜• Bleh. Very much like level one but more underlying sleepiness, heavy limbs, still functioning but it is like wading through mud.

3. πŸ˜’Whahh. Insert all of the above only into limited hours of the day. May possibly spend most of the day resting, sleeping, being “lazy” to then emerge magically into Bleh or Meh for work or other activities.

4.πŸ˜‘ —–. Malaise, fatigue, walking zombie. Going through the motions, functioning (sort of ) in that you can get your body in motion and move through survival mode, but you promise no one that you will remember any of this….

5. 😡 whonk. No I don’t know what that word means, but it sounds like something hitting the floor. This is a day when you sit on your bed until one in the afternoon willing yourself to stand up, trying to work up enough moxie to just get yourself into the shower. I’m not sure if it’s because of POTS or not but I hit “whonk” fairly often right after a bath when I have drained the tub and have to stand up again. I look forlornly up at my towel and robe and standing back up just seems like too much effort. For Lymies whonk days are the days in between Meh, Bleh, Whahh and —-. These are the days you don’t see us, the days we bail on social plans last minute because our shoes are across the room and mock us with the distance. Remember even though we usually “look fine” and can pretty much overcome some Meh and Bleh days you don’t get to see us when we’re whonked, and we think the greatest invention in the history of the universe is the tv remote because it involves minimal movement and provides maximum entertainment.
So I hope you enjoyed my little off-the-cuff fatigue chart. Please note that any day can contain any of the above or combinations and anything in-between. Also please note that friends and family observing the functioning Lymie may not realize that even through we look fine, strange behavior, inappropriate responses, seemingly anti-social behavior, or just plain quietness or unresponsiveness can more than likely be attributed to the above. I know sometimes I will think back and realize I didn’t answer that person, or realize I spoke inappropriately or just came off dumb or unfriendly. It happens. We still love you, we still care, life is  just getting filtered through Meh-Whonk. 
My nap buddy ☺️ 

 

Magic Beans

Jumping right back into work without rest after my trip plus having all my edema and systemic reactions has been terribly fatiguing. Here I am needing to be super strict with my diet again and needing to cleanse, restore and calm down histamine and mast cell stuff, and/or iGg, and yet fatigue at work has been so bad that 24oz matcha lattes, energy drinks and regular tea aren’t helping to peel my face off my desk.

Even though I’m iGg reactive to both coffee and chocolate I have again been relying on “magic beans” this week just to get me through. Alas riding the wake of wakefulness (ha ha) are swelling, tingling and pain 😦   I can also feel adrenal fatigue from being shot up with so much caffeine.

Hopefully I can get back on track soon and let the only magic beans in my life be the beanstock growing kind.

cacao and coffee

Puff And Circumstance

Today is my first day back to work after my dream vacation (first one in 16 years) to Disneyland (will do a Disneyland post soon). I had decided I was going to be really strict and careful with my diet and packed a ton of food, like organic chicken and cooked broccoli and yams. The first couple days I did pretty well, but then you know….Disneyland.

First, we did not get back to the hotel for meals like I thought we would and just ended up being in the park a lot and even the snack food I did bring was not entirely practical, and one can’t survive in 90+ degree weather on dried fruit, zucchini chips and baby food.

I ended up having my first Jamba juice, several times….. Because of messed up schedule and lack of sleep I ended up having coffee a few times. I must admit ice cream happened a couple times and for a big cheat I had a Monte Cristo in Cafe Orleans for my sister’s birthday dinner. On our last day I also had some food at In and Out Burger because I had never been there before.

It was SO hard to make food decisions because I was torn between wanting to be strict and good to my body and just wanting to let go a little and enjoy vacation. All in all after tallying 5 1/2 days I did about 70% good with diet.

Why make this post all about food do you ask? Well, because I think my body’s reaction right now has a lot to do with autoimmune reaction to food and not much to do with days of walking and fatigue.

Ouch:

foot2foot

All Natural Miracle Antihistamine?

i am already a firm believer in the healing power of essential oils and have found several to be useful. 

Today with my inflammation and pain symptoms being at code red I started seeking if there were oils that would work as an antihistamine, and bingo! Found several great articles on the magic LLP (lavender, lemon and peppermint). Can be used both externally and internally.

I read a few testimonials and articles and I’m going to give it a try. Took my first capsule 15 minutes ago. I will let everyone know how it works, and in the mean time here is some great info:

EO Antihistamine  
 

Fire

I didn’t think I would be going through this again, that feeling of being poisoned.all the tissues in my body feel like they’ve been lit on fire, I don’t know how else to describe it it is deep burning pain in the tissue especially my legs but also my arms and torso. I know the fluid in my body’s going crazy when my slip on shoes become really tight and I get lines around my ankles.  

 I have been having abdominal cramping off and  on the past few days and suddenly put on weight and the water retention is insane. What drives me crazy is I really have no idea why! The past two days I’ve been using the symptom tracker on my phone to try and correlate if there’s anything on eating that I could possibly be reacting to. 

I did find that I had been eating too many naturally sugary foods like dates some figs.

And the last couple days I have had some sweet potato that had smoky paprika on it, I am wondering if this could be the culprit being that paprika is a nightshade. But could that cause this systematic agony? Feeling like someone beat me up with a baseball bat and then rubbed me with sandpaper?

Ugh, so tired of this. The other thing that made me wonder is the fact that I’ve been using some avocado oil, plain raw avocado does cause me little bit of stomach distress, but I think I am having allergic reactions to coconut, so coconut oil is out. You can’t cook safely with olive oil, canola oil isnt good for you, I am allergic to sesame and nut  oils, and I can’t use potter because I am dairy free. I swear I just need to put into a medically induced coma and be on an IV drip for a good three months and not eat or drink anything to give my gut a  rest.

OK, rant over. Pain and misery hopefully short-lived.

Stumbling

the last 6 weeks or so I have been struggling. After getting myself on a “good cycle” for a while with the help of my docs I have been in another bout of fatigue, gut stuff, worse swelling…. (My ankles tonight actually scared me). 

I know a big part of it is that the progesterone therapy has been really hard to adjust to. When I started my first round I was knocked down so hard the first 5 days or so with fatigue I couldn’t even stay awake during the day (yes, I am taking it at night). This second round has not been as bad but I am in the midst of what has become the common state of my life for so many years; a state of fatigue and downright tiredness. Now I am going to go into “Lymie speak” because I know the Lymies and the chronic illness sufferers will understand this; this isn’t the same level of “deep to the bones, mind numbing, I think I am going to die, and if I’m not please someone kill me so I can sleep fatigue” that is your life in the midst of the worst of this disease, but it is more like I am still myself but with layers of mono, anemia and maybe a dash of flu. Plus of course the swelling and gut.

But I must say the bad swelling and gut stuff might be exacerbated by the fact that the progesterone strips me of my self-control and makes me want to EAT. And by loss of self-control I am not talking about carbo loading or major cheats, I am talking what bad eating looks like for me, which is stuff like eating pumpkin seeds several days in a row, or some dark chocolate (the good ingredient low-sugar organic kind), and my boldest cheat, gulp, some sheep milk yogurt today. πŸ˜”

My body hates me, that’s all I can say. Because the reaction I get feels like I did something truly dreadful like sour dough bread and butter. 

My mind toggles back and forth between “this is crazy, something is desperately wrong because those little things should not cause a full-on autoimmune freak out” and “you have not given your body the break it needs to get better. A bite here, and item there…it’s my own self-sabotage“. I am immensely guilt ridden when I don’t make it though the day with flying colors and can’t control myself as strictly as I would like to, and frustrated that I have been knocked from getting back into a good exercise routine, back to ground zero because of fatigue.  I really want to do a 2 week vegan cleanse just to give my body a break if I can muster up the will power.

Even my coworkers said I looked drained and have been looking sicker and more tired. My skin and color aren’t as good either.

So, how do I get back out of this? I’m not sure but there is one bright light in all this; I have been just rejoicing in the Lord and He has been sustaining me. I have also been able to keep my creativity up, which is also a blessing. Hopefully my body follows soon.  

 

A tough day

last night I took my first dose of progesterone;  as my doctors are starting to focus on treating the screwed up hormones side of this autoimmune madness. You are supposed to take it at night because it can make you tired, so I thought “yay it will help me sleep”. Alas it did not aid my insomnia but instead left me feeling tired and heavy throughout the first half of the day. Gravity was pulling down so hard not even matcha green tea, an energy drink and 3 shots of coffee helped much. (Yes I am supposed to avoid coffee and have done so successfully for quite a while, but when you’re desperate….) But I was alert enough to pace through at work, and goodness knows I am used to working fatigued.

  Unfortunately what did give me a jolt in the very early afternoon was pure adrenaline, source: verbal abuse. Being reamed and sworn at by someone for something that is not your fault simply because they are having a bad day, and because they have a longstanding pattern of lashing out in anger, bad language, blaming others when things go wrong (whether it is anyone’s fault or not), not listening to explanations (and really not caring to hear truth anyway)…..defaulting to being cruel, condescending, demeaning and sarcastic….( I could go on). Sad the men out there that put down and belittle women in particular, I will say it is not pleasant. What stinks is this causes me real physical harm with my pulse rate, my cortisol, my headaches, my GI issues and my emotional well being.

Sigh. I prayed through being a targeted victim of said person’s rage because I was the closest target, and instead dwelt on the truth……I am stronger. The Lord is on my side and I wear spiritual armor, none can touch me. 

I have been focusing on victory and overcoming lately; in my writing, devotions and prayer life. When the office emptied for lunch I put warfare into action and I took authority over said person’s office space by praising the Lord and claiming His dominion and authority over the physical space and spiritual realm. All is the Lord’s territory. I also put on praise music. It was a great spiritual cleansing both for myself and the space. Evil has no place where the Lord is praised.

I have a better peace tonight then I did earlier, but it is still hard to quickly heal mental and emotional wounds. Of course I need to recognize that we battle not against flesh and blood but against powers and principalities and spiritual forces. And the enemy does use evil selfish people to attack the Lord’s anointed. I am giving this one to the Lord and asking Him to do the fighting for me and take care of me going forward. 

He is my covering as I continue to regain my health and discover where His path leads next.

So my insomnia fatigue and swelling are up right now and GI stuff has been worse the last week, but spiritually I am gaining in the healing game.