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A Peek into the Life of a Household of Lymies 

11/6/2014

3 Comments

 
I have probably dropped enough comments over the last year for my readership to know that I have Lyme disease--as well as my older sister, Savannah (who was by far the worst). You may not know that the rest of my family has it as well.

As of this week, the last of us (Mama and Katherine) started Cowden. Daddy started a month ago. So, we have a house full of Lymies in various stages of detoxing, herxing, being sick, and getting well. Each and every one of those is tightly connected with the others.

The symptoms in our family vary from foggy brain to lack of energy, from inflamed intestines to inflamed facial skin, from no stamina to insomnia, from joint pains to muscle weakness, from hearing 'issues' to floaters in ones eyes. If you look at this chart, I personally have 17 of them (that's just a quick skimming without actually taking the time to think about it).

So, a peek into a day in our house...

Yesterday Daddy's bartonella (aka "Bart") was acting up. Bart is a co-infection with Lyme and one of it's symptoms is irrational irritation/anger flare up. I struggle with this myself, as does Mama. There are days when one or two or three of us are dealing with Bart and poor everyone else feels like they have to walk around on egg-shells. Once we identified that is what is causing these irrational temper flare ups, it helped--both those of us dealing with "Bart" and those of us desiring to not be seen. 

Mama can't hear very well because her Lyme is affecting her ears--and then everything reverbs. I think this is better than it was, say, two weeks ago, but it still is a problem for her. 

I don't really know what's up with Savannah, she has been out of town now for two weeks and I've only talked to her once. She's having fun. ;)

Katherine has laryngitis (not the squeaking kind, but simply a voice that is gruff and almost not there). She is a bit worried about it, but the general consensus is that it is just a herx reaction and that she shouldn't worry about it. Herxing comes and goes as one's system can or cannot keep up with the detoxing going on. I attempted to console her by pointing out that, "You could be having an emotional herx." I'm not sure how comforting she found that, but give me the choice between laryngitis and being an emotional (read bawling) wreck, I'd take the laryngitis/gruff voice any ol' day.

And then there's me. 

I guess one of my biggest, well, frustrating symptoms is my lack of stamina. I am used to working hard one day and getting up the next day and diving in again. I cannot do that these days. This thing right here is where my battle comes in. I can deal with the pain that comes and goes in my stomach, the fairly constant ache in my right hip and left wrist. I can (sorta) ignore the floater in my left eye and I can pretend that I hear more clearly than I do some days. I can work around swollen lymph nodes and the occasional stab of odd pain. But when it comes to having no energy? It makes me mad or turns me into a puddle of tears. 

I feel bad, guilty sometimes, that I cannot do what I used to do. 

For instance, I raked and gathered up leaves yesterday. I felt fine while doing it (not counting that fact that both my wrists were getting sore and my back was stiff by the time I was done), but today, I feel pretty near wiped out. (Though, I'm realizing, I could be even more tired.) Now, I can say, "Oh, it's the weather" since it's rainy...and it may be part of it, but really, I know, deep down in me that it isn't the weather, but it's me. I have these nasty evil bugs in my system that hold me down. 

I have had to admit it and it stinks. I don't like being weak. I want to be strong! I want to be someone my family can depend on to get the stuff done that needs doing! 

So, it makes me mad. Not that that does any good. 

Then I have to stop and think: Is my attitude pleasing to God? 

Well....if I'm discontent because I'm weak, because I'm sick, because this is what God has ordained for me, then no. If I really want to be blunt, I'm rebelling. That's sin. 

It's much easier to admit that than it is to be contented in my weariness, in my wish to do the things I think I need to do. Instead of dwelling on what I cannot do, I probably should be spending more time praising God for what I CAN do. I should be grateful that my mind has not been overly affected. I can read; I should do more that. I am able to sew--I have been doing that and have more things to do (plans for this afternoon anyone?). I can knit (and I LOVE that). I can wash dishes (yes, even when I feel crumby; I can wash dishes). I can still play my instruments even though I may have to brace one wrist to do so. I can run a vacuum cleaner. I can see...I can hear...I can sing (poorly, but still)...there are so many things that I CAN do; but I tend to lose sight of them because why? Because I cannot go out and grub around outdoors like I could. 

Sometimes I cannot tell if I have improved any during my almost six months of Cowden. But then, I have. The nearly constant burning in my stomach is not there. Yes, it flares up now and again (this past week for instance), but it is not constant by a long shot. My meningitis is less frequent and less severe when it does come on me. I don't think I'm quite as off-balance (literally) as I was. My dyspraxia comes and goes, but it's on the outs again right now. Come to think of it, my word-block may be a little better too!

I look at these things and I feel encouraged--until I think about my lack of stamina again. 

See, it's a vicious cycle! :D (*Cracks up* Gracious! I just made a pun and didn't realize it! Lyme is a vicious cycle for real. Lyme spirochetes have a life-cycle [just like any other bug], so the symptoms kind of come and go in a cyclical time frame. In theory anyway; probably if I actually went through and looked at some of my symptom flare ups I would really realize that.) 

Well, this didn't flow exactly like I intended...but oh well. Thanks for reading my rambles; it made me feel better. I even feel like I could go do a wee bit of physical labor (!) if it just weren't raining. *laughs* But I need to sew today anyway, so I guess it's fine.

*chin pokes out stubbornly*
I am getting better...

     Racheal

3 Comments
Mum
11/6/2014 06:06:15 am

Yes, be thankful that you are not as bad off as so many others that have been totally debilitated by this. Hopefully by catching it early and treating it now, your arthritis pains will get better instead of completely crippling you like it has done others. And perhaps the stomach will get all better and you will not spend years trying different things to make it stop bothering you. And in the end, I do believe your stamina will come back. Be patient awhile longer...

Reply
Sandra Sullivan
11/6/2014 07:46:01 am

Thank you for a peek into a household of "lymies". It is helpful to know what you are experiencing and how it affects you as you interact with one another. Tricky business sometimes, it sounds :-) We pray for God's healing touch and for you all to learn what ever lessons God is teaching through the difficult times. He teaches us all through our different paths we must walk. May He also give you the strength you need to bear up. Love you, Racheal!!

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Carol Noren Johnson link
11/10/2014 07:50:46 am

Rachael, you write so eloquently about this struggle. I didn't realize the extent and that all of you have this. Now I know more how to pray. Also you all are caregivers for parents/grandparents in addition to being lymies!

This last year my husband went downhill with mixed dementia. His soul went to our LORD on June 23 and his body to the grave on June 28. Scripture has sustained me. While my husband was in a hospital bed in our master bedroom, I was beside him in a twin bed, meditating on Scripture in the middle of the night. As a widow now, Scripture sustains me.

I printed Scripture out on cards on a three-column landscape card stock, being careful to not let a verse or passage go on to the next column. Then I cut each sheet in thirds.

LORD, may this pop, mom, and three sisters be strong in the power of His might, even if the body isn’t.

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