A “Bad Day” in Lyme Recovery

So today is sort of a mini follow up to Confessions Of A Functioning Lymie;

And honestly today wasn’t “bad”, but it wasn’t easy.

At this point after years of treatment I am not as sick as many, so relative to many I have no complaints. I have still been having some harder days lately due to increased work schedule and “?”. It’s the “?” That drives us mad. “What did I do to make things worse?” “Was it that slice of organic cheese? (Not supposed to have dairy)” “was it the fact that I’ve been having some dark chocolate lately?” “Could it be those little cheats can culminate in autoimmune fury?”
I woke up at 9am in order to try and go to church and forwent an extra hour of sleep that I probably would have gotten. But for whatever the reasons, today I woke up with my face puffy, feeling hungover and heavy and my limbs (especially my legs) full of fluid and enormous. (Took me 5 minutes to squeeze into my leggings). 

My POTS seems exacerbated along with the flare up and so standing at the sink to get ready left me a little breathless. I was 45 minutes late to church as I couldn’t get out of the house until after 11 (this time was spent trying to get moving, trying to wake up and doing a coffee enema to see if that helped the inflammation). 

The only reason I didn’t stay home all together was a friend wanted to take me out to lunch after church, and I don’t get out enough as it is.

So I am glad I went and I had a good time, but was uncomfortable the whole afternoon, foggy and in pain. My vision also gets blurry with increased inflammation .

And after this “strenuous” 5 hour afternoon out what did I come home and do? I went straight to sleep for a couple hours.
Still grateful I am mobile and done dealing with the severity of symptoms I used to, but a lot of days are still a struggle and every expenditure costs me spoons.

What a loving caring friend I have despite my struggles ❤️ 

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

On The Eve Of Something Special

it has been a little while since I have written much here on my personal blog. I think I have been quieter mostly because the last 8 weeks or so have been rough.

My downturn started with the start of progesterone therapy, which knocked me face first on the floor and I haven’t  quite gotten back up again. I had mind-numbing fatigue again, food cravings that rivaled starving animals, and weight gain (😭). I was also feeling my emotions and personality slipping…just not myself. It got bad enough that I went back to my local kinesiologist feeling like my body was screaming at me and she said that she had never seen a reaction to progesterone that extreme, it was storing up in my body and I couldn’t get rid of it. One other thing she confirmed, whether it was related or not…Borrellia flared up again, this time in my vascular system.

There is a lot that has happened; first after pushing through for two months my ND took me back of the progesterone (phew)(right after I saw my other doctor)  and said my adverse reaction could mean a pituitary problem, among other things. The good part is that I also got the good side effects of the progesterone that we were hoping for, it’s just that the bad greatly outweighed them. 

Sigh. So after a very long in-depth appointment with my amazing ND going deep into issues that no doctor has before, we have a plan. So I enter a new chapter of treatment as my ND is going to go aggressively after this horrible lymphedema/lipedema that has so plagued me for years with no end in sight, he is going after this last remnant of Lyme, he is going after the mycoplasma and a lot of other stuff that is still a mess. He is going to put me on a strict IV regimen along with other things. Two of my family members who have had “the” test have been positive for mycoplasma (I only need to have be blood work myself but I know what they will find). This seems to still go all the way back to those 5 1/2 years as a kid living in a house with 13 different kinds of mold, one of them being black. We also still don’t know what chemicals and metals were dumped in the groundwater of our well that is still effecting us. 

This really helps to understand why we have had such a tough time beating the Lyme and getting better, we are still being peeled like figurative onions uncovering more and more damage and disease.

Now I must say in spite of this the LLDC in Idaho has still helped immenselymy cognitive and neuro stuff has never returned after his treatment, and although fatigue and body pain still remain it is just not on the same level it was. He treated parasites and other Lyme co-infections that have stayed treated. He gave me my life back.

Now on an amazingly positive note (🎶) I am going to Disneyland tomorrow!!!!!!! I can’t say enough what a big deal this is to me and to my sister. The Lymies will know how illness can consume you inside and out, literally eat a hole in the middle of your life that gets so deep you can’t even see daylight anymore. Well I haven’t had the health or finances to go on any kind of vacation in 16 years, so this is EPIC. My sister and I are still struggling, but this is the first year (thanks to our LLDC) we have had health enough to even attempt anything like this. On top of that it is also with the help of some lovely and loving friends lending a hand that it is financially possible.

All in all we are thankful to God, ultimately He has made it possible in His kindness. 

So we are hoping that we will have the time of our lives, and be ready when we return to face a new battlefront.

We will also ask for prayer for our family as it is all four of us that are still ill and in need of treatment. We will be unable to afford to see this through without a miracle from God