Tell me when . . . WHEN!


I just came home from a three day veterinary convention. It just so happens that our booth was right next to a MAGIC MASSAGE vendor. They were selling massagers that promised to alleviate back and neck pain and get rid of migraines completely! I thought it was a sign from God! Finally one of my prayers had been answered!

The second day of the conference I couldn’t resist – I had to try it out! I got up enough  courage to walk over and ask for a demo. I was so anxious. Could it really be true? Would I really live pain-free forever now? I have a seat, he explains how the device works, I put a few sticky pads on my neck and wait. The pressure/voltage/waves (whatever makes this thing work) were crazy intense. With Bartonella, one of my new symptoms is a stiff, sore neck. It always feels like I slept wrong – except it never goes away. So, I was hopeful that this little device would finally put an end to this ongoing pain. A couple minutes into the treatment, the sales rep asked if my pain was still there. Yep. Still there. So, we moved the pads to a different part of my neck. Still not working. We added ear buds that are made specifically for migraines. So, now I have two pads on my neck, one massager on each ear and the only thing that is happening is that my muscle twitches are out of control and now visible. I’m twitching uncontrollably. He looks nervously at me, and asks if I’m okay. I take all the pads, plugs and buds off, hand them to him and reply, “Yes, I’m fine,” and walk away.

This little gadget was working for so many people. The woman in the chair next to me actually swore that her headache was gone five minutes into the massage. These things were selling left and right. They were BY FAR the most successful booth at the whole trade show. But yet, it did nothing for me.

As I sat on the train alone, I started to think about it and realized that the reason it didn’t work for me, was because my pain isn’t real. It’s real in the sense that I feel it and I hurt from it, but there is nothing physically wrong with my neck. I am not suffering from a pulled muscle, I’m suffering from a Lyme and Bartonella co-infection. The bacteria is affecting my brain and my brain is convincing me that I have neck pain, knee pain, headaches etc. But in reality nothing is wrong with my body. That’s why the massager didn’t work for me. You can’t fix what’s not broken. That’s why pain meds don’t work either. The only thing that works for me are the mind altering drugs. They don’t take the pain away, but they help me to tolerate it.

So, now what? I keep chugging along as I have been, taking my 15 plus pills every morning, mix and chug my secret lyme potions, and chase them with a peanut butter crackers. I read a few blogs tonight from other Lymies who suffered for years and years without a diagnosis. I am SO blessed to have received a diagnosis so soon. And even more blessed to have a husband who is behind me every step of the way, assisting with doctors appointments, prescriptions, bed rest and more. But when is enough, enough?

I trust God and His plan. I know that there is something to be learned from all of this. But it’s been over a year of being sick now. Almost one year of dr appointments every six weeks, and a new treatment plan every few months. And where am I? Back to square one.

I’m lying on the couch every night. My muscles ache from head to toe. Everyday there is something new, whether it’s night sweats or a full body rash. I no longer dream of running on the beach, and training for a race – but I long for a morning with coffee and breakfast instead of rummaging through my basket of prescriptions and gagging on pills. I want a night of tucking my kids in bed and telling bed times stories, instead of kissing them on their forehead and sending them up to bed, while I go back to fetal position on the couch.

I’m an advocate. I fight for what my kids deserve. I fight for treatment I deserve. But just like our early Autism days, I feel like I’m fighting for something that I don’t even know will work. I used to fight with the child study team for one hour of one on one speech therapy for my son, because he had such a severe communication delay. I didn’t know if the 30 minutes of small group therapy that they were already providing was enough. Maybe it was? Maybe it wasn’t. But I had to fight for more, because I knew he still wasn’t where he needed to be. So, I fought.

Today my husband is fighting the fight. He wants me to see another doctor. He doesn’t think they’re being aggressive enough. He wants IV treatment now. The pills aren’t working. But are they? You’re supposed to feel worse before you get better. The antibiotics are killing the bacteria, the toxins are flowing through your body and your organs can’t work fast enough to get rid of them, so they’re wreaking havoc on your body. I feel like crap. I’m sick as a dog. Does it mean it’s not working? No, it means it is.

But tell that to my husband. He has had enough. So I have to ask, is this Lyme journey just a test of our faith? A test of our patience? There is NO CURE for Lyme. Not today, not tomorrow and probably not in my life time. The only thing we can do is kill off as much bacteria as we can and get the immune system back up and running. There is nothing else. So, when it comes down to it, all we have is our faith. Faith in the doctors that they are doing the best they can. Faith in each other that we will be there for each other. And faith in God…. that He is in control. That He will never leave us or forsake us. I know that He is carrying me through this and that I will come out, hand in hand, on top of the Lyme mountain with hubby.

But for now, we’re stuck in this valley and as God pours more and more rain/trials saying, “Just tell me when . . . .” We’re screaming, “WHEN! WHEN already! When!”

But as I sit here and type this, it makes me chuckle, because who are we to doubt Him? To say, okay, we’ve had enough. We know nothing of his amazing plan. Years from now we’re going to look back at this moment and think, “wow . . . . I see how it all came together after that!” But until then we have to keep reminding each other that even when we’re ready to throw our hands in the air, wave the white flag and toss in the towel, God is in our corner. He’s got our back and when we’re too tired to fight the fight anymore, he will fight for us.

So the next time you’re ready to give up, you’ve had ENOUGH . . .  just stop and take a moment and consider this: HIS grace is enough. He would never tell you WHEN, so we should think twice before we say it to Him.

grace is enough


4 thoughts on “Tell me when . . . WHEN!

  1. What treatments are you currently using for your Bart? I have it, as does my whole family. We’re all in various phases of treatment.

    One things that help with our pain and discomfort is a Biomat. They are expensive, but WOW does it help! Just Google Richway Biomat.

    • I’m on doxy and a new “potion” BLT. It’s brand new, my doctor just found out about it at a Lyme conference he went to. I’ve only been on it for a little over a week. I started out with two drops twice a day and have worked up to 10 drops twice a day. It’s really gross!! But I guess it’s working. I broke out in a giant rash from head to toe and I’m totally herxing, so I guess that’s a good sign!

      I haven’t heard of the Biomat. I will absolutely look into it. Thank you!

      • I researched the BLT. Found that it includes: red root, teasel, boneset, black walnut hulls, lomatium dissectum, smilax, stillengia sylvatica – and it has been around since 2009. I had not heard of this before, but will keep this in mind when researching treatment options.

        Bart is so hard to treat!

      • I just read a few of your most recent blogs – it’s crazy how much we have in common. It really seems like you’ve done your Lyme research. Do you mind if I pick your brain a bit? I’ve done my Autism research, I did the Lyme diagnostic research – but I’ve really been leaning on my Lyme doctor for the treatment – but I’m thinking maybe it’s time to take this into my own hands as well. I’ve been on treatment since February of this year. I don’t know all the antibiotics off the top of my head, but there have been two or three different combinations. The last was so intense, I had to stop. This one isn’t too bad, and like I said I think it’s working because of the night sweats, rash etc.

        Have you ever done IV treatment? Where do you stand with that?

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