A “Good Day” To Be A Lymie

Today is a good day; it’s currently 12:10pm on a Saturday and it’s still my “morning”, being that I’m still convincing myself to get moving and I haven’t done much yet.

I am coming off of several weeks of an antiparasitic/antiviral treatment that was pretty hardcore, and it was phase 2 having completed phase 1 the month before last. I feel like it takes a while for my body to reset and rebuild after the onslaught.  I had a UVBI blood treatment on Monday and I’m still not sure what my reaction is being that I felt energized the day of and not so good the rest of the week. (I was told I could experience some die off).

I’m tired. Even though I’m done with that particular protocol I’m still on a TON of supplements, and as of a few days ago three new prescriptions. Still have to deal with Candida, hormones and other stuff. I’m tired.  But body pain today isn’t too bad, fluid retention (my pesky persistent minion) is at about a medium. All things considered today is a good day relative to how crappy I have been feeling. I might even try and go for a walk.

I am mentally troubled this “morning” as I contemplate where I’m at as far as treatment protocol and what the rest of the year holds as far as medical expenses and whatever the doctors will want to do next. 11,000 went on the credit card just the last 6 weeks for our family’s medical needs 😳

That said; I got confirmation from my main two doctors this week that the protocol to kill the viruses and parasites was very successful and I’m in good shape as far as that goes. Which leaves the remaining battle being the autoimmune disorder factor in this long-term disease, and that’s been a huge battle. 

Bottom line my body hates itself and I hate it. Not a happy cohabitation. So my Mast cells and histamine, cytokines and gut all need to decide to start getting along or my slow decline into self-destruction will someday be successful. 

That said I am hoping that the remaining months of this year will see big changes, that I will start to experience what “normal” feels like, and that next time I have a “good day” it won’t be in parenthesis because of relativity, but “good” will actually be good


Lyme Fund

Advertisements

When Life Punishes You For Living

Here I am again, posting on another “bad” day.

You see I’ve had some decent ones, even though I never feel “great” I’ve had consecutive weeks/months of having a better balance here and there. Inflammation has been acutely worse for weeks, but I’ve been able to maneuver around it to a point. Yes I’ve had days of crashing more and napping more, yes I’ve had to say no to going to church and Bible study because “extras” are too much. (Hey wait a minute! Maybe I’ve been struggling more than I’ve acknowledged). But anyway, then there is today; today when I feel my body is getting revenge for all my betrayal. Today when I feel stripped to the bone. I woke up at 11am (yeah I know), and still felt I could barely climb out of bed. Breakfast happened at 12:30 sitting in a detox bath, and I feel completely horrible: achy, stiff, toxic, beyond fatigued, heavy, swollen, fuzzy-brained. The autoimmune overactivity is high and I can both see and feel the fluid and pain.

So what did I do to myself to deserve this? That is always the question I first ask because self-blame is my automatic go-to. Well what I “did” was try being semi-normal for a few weeks: having to work a couple weeks full time, eating some “bad” stuff here and there (and by bad I mean bad for me personally; like dark chocolate, some organic mayo, some cayenne, a little vegan ice cream,etc.). Am I right in beating myself up? I am never sure how bad to guilt trip myself. It’s so hard when all you want to do is live and your body is just really not into that.

I am still counting the days until my new patient consult on the 14th at Sophia to address autoimmune issues and mast cell activation disorder (assuming that’s what’s going on). I’ve had a couple doctors confirm that Borrelia, Bartonella, Babesia, Epstein Barr, Erlychia…and all the rest including viral coinfections, are”fixed”, so I’m hoping the last hurdle is the autoimmune, but it’s a big hurdle. 

I have not paid any attention to fundraising for a long time; mostly being it makes me feel shamed, embarrassed, unworthy, guilty, and all the feelings that orbit the above. But more than that is my constant guilt of being a drain on my family. Thankfully family medical expenses have come down a bit from around 6,000 a month to around 2,000, which is good but still difficult. As my sister and I are about to embark pursuing this new clinic though they may jump up again exponentially, so I will put a link here so anyone that is able and led to help. Youcaring

So here I sit in bed on a Sunday afternoon wishing I could have gone to church, wishing I could take my dog out, wishing I could be out and about. Tomorrow may be better, I’ve been through this more times than I can count and I know that often things won’t be so bad the next day. On a day like this things always feel so bleak, but I know that tomorrow always brings new hope and a different viewpoint.

I’m glad I write on bad days, when I can’t move and I hurt and can’t think well; Writing gives me a sense of purpose and makes me feel I’m still here, still fighting.

See you tomorrow 🌅

A So So Day In The Life

Although I have posted about it on Facebook, I have not blogged about the insomnia I have been experiencing the last several weeks. Now I have experienced insomnia in different levels my entire life, and what I would consider a good night sleep would be waking up a minimum of 2 to 3 times and being able to fall back to sleep without great difficulty and maybe getting around eight hours. But through this chronic illness journey I have definitely gone through periods of time where the insomnia has been much worse. During my initial two years of Lyme treatment after being diagnosed I was put on Ambien by my LLM.D. That drug gave me the best sleep of my entire life, but if it’s not meant for long-term use and it was absolutely excruciating weaning myself off of it.

So during the different phases of treatment over the last several years my insomnia ebbs and flows in severity. The last couple weeks with re-entering a brain detox protocol along with a liver protocol, its been worse again and I have been averaging 5 1/2 to 6 1/2 hours a night. Fast forward to last night when I decided to really up the sleeping aids to help me get a decent nights sleep being that I do not have to work on Wednesdays. So along with my usual nightly protocol (GABA, L-Theanine, Cannabis Oil) I added Melatonin (which I don’t take regularly for several reasons), magnesium, and a big dose of Benadryl. Well I got the most sleep I’ve had in weeks, but was so hung over today I could barely get myself up off of the floor until 1p.m. It was actually hard to hold my head up and even to breathe for a while. Ahh the trade offs. For those of you that may kindly suggest other sleep aids to me, I want to say I have probably tried them, And the ones I don’t use I don’t use for a reason; either side effects or they stay in my body so long that I am horribly hung over for days. 

Anyway at 1 PM I was finally able to get myself out of the house and go to Les Schwab to get my tires checked And rotated, which I had been putting off for weeks since my tire lights had been on. I had them do a check of the rest of the car while I was there and not too much to my surprise my car is in need of about $1400 worth of work being that it is a 2008 and it is just one of those things. 🤑😫 #stress #financialworries 

I also had a follow up today that was scheduled last minute with my doctor in Anacortes to try and address the autoimmune flare up that has been going on the last several days. I mean seriously, should a very tiny tub of organic hummus cause searing burning pain, inflammation and misery for days? I don’t think so. Thankfully my doctor does not think so too and he still working away at getting the autoimmune overreactivity under control. Along with the protocol he already has me on, he now put me on a Chinese herbal blend to help with shallow breathing and to increase circulation and blood pressure. (Because I am a pretty low, shallow person naturally 😉).

So now at the end of my day I’m sitting in a detox bath and mentally prepping myself to go to work tomorrow. My mind is still heavy with thinking about the negativity online and all the verbal attacks and untruths going on on the internet; in the health community and just the world in general. I was questioning how can someone stand up for truth and be a peacemaker at the same time avoiding getting into heated arguments? The internet is rife with untruths being spread like wildfire, misunderstandings, rash judgements, hard hearts and closed ears. It crossed my mind that Jesus is the only one to ever have done that perfectly; been a truth teller and a peacekeeper…. and they still killed him! 

It is Amazing how so much is taken for granted to be true without actually fact checking,  and other things are so blown out of proportion that they become untruths. (The Pharisees adding hundreds of their own “truths” and laws to scripture anyone?) (bueller?) 

Being an advocate for absolute truth and an advocate for the chronic illness community, I think it is a really hard line when you are attacked. All I Can say is that I pray for wisdom and how to speak truth and kindness and not to waste my time on those whose ears are closed and whose mouths are open and spewing flames. 

So, this is not one of those big advocacy posts to get a point across, or to share something deeply significant about the chronic illness journey, it is one of my more boring and quiet days where I just felt like blogging a little. Blessings to you all 💚 ~Jennifer 

Hope, And A Look Back

12/23/15. Hope,
I wrote the short essay below about 3 years ago. I remember acutely how it feels to be in this place; it is like a living death in some ways… losing yourself.
2012 was one of the worst years of my life even though I finally had a diagnosis of what was wrong with me. It is the year I went through being bedridden during initial treatment, being unemployed and unable to work, unrelated to illness I was devastated that I had been believing something for 7 years that I thought was from God and ended up being false. My faith for the first time in my life faltered and I stopped talking to Daddy.
How much has changed in 3 years. I am however incredibly grateful because I can look at what God has done in my life and how He has changed me (for the better!). He has truly taught me what rejoicing in trials looks like and that I can live the truth that all things work together for the good of those who love Him and are called according to His purpose. He has used me in unexpected ways and brought people into my life that I would not have met if it had not been for my illness. Now that is God.
For those who are still in a place of deep suffering my heart reaches out to. I would be happy to be contacted either through this blog or my Facebook page so that I can do my best to encourage you.
So here is what being a little lost girl felt like:

Little Lost Girl
The Other Toll Of An Auto-Immune Disease

At some point I stopped looking in the mirror; of course not quite literally because I need to do my hair and makeup in the morning, but a long time ago I stopped “seeing”. So it was a bit of a shock when one day I actually did see, and I didn’t recognize myself. I look old, I look sick, I look puffy, I look fat, I look frumpy. Gone is the girl I see in photos from several years ago, and not just physically, because that girl had things she enjoyed doing… people she wanted to spend time with…she had an inner passion for the things she loved, and had so many hopes and dreams….

I look in my closet and there are the clothes that I no longer wear, the digital camera that I have never used, the containers of craft materials that I no longer have an interest in….because life used to be not only about today, but about tomorrow too. Now I struggle to get through just one day at a time, just surviving, there is no energy for anything else, and it is more than physical, my brain is tired too. I used to love crosswords, but sometimes it is too hard to recall the words I know that I know, or to spell words that I know are locked somewhere in my toxic mind.  People are too hard to be around, not because I don’t like them, but talking and engaging takes mental energy, and that is easily used up doing my job everyday (thank God He has given me the strength. So when I am quiet and don’t feel like talking, I am more than likely not in a bad mood, and it has nothing to do with you, I am just shut down.

I miss my personality; it is actually hard to recall who I am. I know I used to enjoy so many things, but I am not sure what they all were. I think that I will need to rediscover myself, and see what emerges when the chrysalis of illness falls away.

So, I am writing this not to whine nor for pity, but just to share what chronic illness can do to the core of who you are as a human being. My sister and I talk and share all the time about what we are going through, and how what we are feeling affects us socially and mentally. How each of us wants to tell everyone we see from our friends to people in the grocery store “You don’t understand, this isn’t me, I’m really someone else…”
But thankfully there seems to be hope. Treatment has been rough, and the different medications aren’t fun, but I believe that finally after possibly two decades of having this garbage in my body and not understanding what was wrong with me, there are answers. I have been told by my two doctors and even by friends and acquaintances that next year everything will be different. I want to hope so badly that this will be true, and if it is, I might emerge again, but will I be who I was or a little different? We shall see…

Lyme Free is possible!

so I suddenly realized I had not shared my latest update yet;

I had my 1 year check with my Lyme doctor in Idaho Monday the 2nd and he couldn’t find any Lyme! Or Bartonella, or Babesia, or any of the other little coinfections…. (!!!!!!)

This is wonderful. I am feeling pretty good overall, although I have to bide my energy and listen to my body. I am still having horrible reactions to most foods, and still that horrible swelling/water retention, but that is a process. Again I am working with a clinic and 2 NDs on the autoimmune part of this since my body has been in a state of high reactivity for so many years. I am still having systemic reactions to a lot of foods and I am very chemical sensitive, etc. So it is going to take some time and effort to calm everything down. Healing the leaky gut is a big part of this and dealing with the DNA aspect of targeted nutritional therapy. But I’m getting there! Only a few IVs left to go… At least less poking is in my imminent future 😉