Posts Tagged ‘Chronic Illness’

Health – It’s been so long since my last post. My sensitivities are crazy awful. It has been one month since I stopped antibiotics. I can’t possibly tell you all of the back stepping. I will not give in, however, and push to maintain my albeit limited activities everyday.

Love – Once more I have to say that I am extremely lucky to have a husband who is willing to be whatever I need. He has adjusted his life in so many ways to accommodate my illness. I loved him before and love him so much more today.

Internalize – After an extended period of verbally keeping my symptoms quiet with certain loved ones, a couple of short discussions in the last two days remind me to keep it to myself.

I despise symptom competing. There are others in my life who suffer from illness. I feel for them and wish them relief. I do not wish any of this on them, and when my symptoms suddenly become theirs, it troubles me for multiple reasons.

Are they coming down with these problems so much like mine because they are misdiagnosed? I pray it isn’t so but fear it is. Lyme disease is often misdiagnosed as MS, ALS, fibromyalgia, and many other chronic and deadly illnesses.

Is it a coincidence that they suffer from these things after I talk about them? The last thing I want to do is presume that someone I love is playing it up or suffering from a psychosomatic illness. Perhaps that they feel as I do shortly after I talk about it is simply a coincidence time and again.

These couple of recent talks confirm what I had decided last year, there are people in my life that I at one time could turn to with anything, but I no longer am able to confide in with a clear conscience.  For their sanity a well as my own, I will return to silence.

I would love to hear if anyone else has had a similar experience.



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Lyme disease is the number one vector-borne illness and is grossly misdiagnosed and undiagnosed around the world. Purposefully misleading information has been published by our government officials regarding the contraction of and treatment of Lyme disease in favor of the almighty dollar. It is a travesty and a crime what is happening to Lyme patients in the process. Diagnoses denied, insurance coverage for treatment denied, and disability payments denied, many thousands of Lyme sufferers are left debilitated and penniless. It’s time for a change. Please help spread awareness! Support Lyme nonprofits to fund research, awareness and treatment.

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So I found myself in the self-pity, woe-is-me abyss as of late. I’ve never been a dweller of that chasm, thus it only causes me serious resentment and annoyance to be there.  The majority of this irritation is focused on myself; however, should any other person be wallowing in the murky water at the bottom of the cavernous hole, I can swiftly aim the sarcastic witch brashness right at that grumbler.  Climbing out of this hole to see the light of day is problematic at best but so worth it.  It matters not how I feel today nor does it make a difference that there is no improvement from yesterday.  What is paramount is that I’m smiling and moving forward.  I have plans…enormous charitable ideas.


With our brains acting as living computers, the data we feed into it tells it what to do.  This is powerful.  Spend each and every day telling myself that I can’t bear any more, and I continue to deteriorate.  Will I improve with the positive turned back on?  Time will tell the tale; however, I am quite certain that I will be more likeable to those around me as well as to myself. Regardless, that proverbial group of wise people fondly referred to as “They” once said, “Everything happens for a reason.”  I intend to ensure a positive entry in this Lyme chapter.  This disease may have begun badly but won’t end that way for me, and I will not ever again step into that dirty, murky water in the pit of negativity. To any loved ones whom I may leave behind there, sorry, but I’m back on track.  Whine week is over for me.  I’m faking it until I make it. 

I hope everyone had an amazingly blessed Independence Day!

Fourth of July from the front porch was beautiful.


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Each day is this tremendous balancing act as though I’m that crazy man who traversed the gorge on a tight wire without any protection.  This lack of medication has caused the wire to be reduced to mere millimeters it seems.  Like a house of cards, the slightest wind will send it all tumbling down.  I’m the queen of fake.  Frankly, I should be nominated for some prestigious acting award.  Pulling myself from my bed every morning and affixing my smile to prepare for the first glimpse of a family member is the first act.  Stepping onto the treadmill for my snails-pace daily walk or sitting on the recumbent bike if my feet simply can’t tolerate the walk without even a groan to indicate the screams from my body is act two.  The head pounding and joints shooting pain, I fake my way through act three with grace.  No painkillers.  No indication to those around me.  My sarcastic witticisms continue throughout.  Act four finds me in a steaming hot Epsom salt bath which drains a Lyme ridden body yet I move on to act five and my greatest work…Dinner.  My time in the kitchen cooking and baking used to be my therapy.  Now it’s simply another feat to be accomplished.  A mountain to be climbed without kicking rocks down.  I do so love the happiness it brings my family, my job well done.  The smiles on their faces and full bellies are worth the effort by far.  Final act, lying wide awake in bed with full anxiety in motion, working to keep from waking my husband, feeling like I’m climbing out of my skin, and thanking God for another beautiful day with my loved ones.


Sadly, one kink in the rope, and I am doomed to the abyss.  The house of cards will be destroyed for the day should one simple disagreement or stressful situation enter my day.  Finished.  No more acting today.  Everything shows through like the clearest transparency. At that point, the only option is to pick up the deck and prepare for a better performance tomorrow.

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I find it striking that my husband and I have been at my parents’ house for nearly one year already. It saddens me that I’ve accomplished little in this year except losing my telecommuting position. Now that my time is freed, I don’t know how I managed to work for so long. My brain is so muddled that I often can’t write two words that make sense. On several occasions, I’ve spoken to attorneys regarding lyme only to be turned away. When I had a relatively lucid day, I composed a letter to government officials pleading for legislative change for lyme testing and treatment. I, of course, received canned responses from them all. Today, I wrote a letter to my old family physician begging him to alter his practice so no other patient seeing him would suffer my fate. If one person benefits from this, I will feel accomplished.

I am currently on a regimen of Levaquin, vitamin d, cymbalta, 5-htp, and probiotics. Being very strict with sugar, gluten, and caffeine had no affect on my symptoms. Unfortunately, neither has the current treatment. The only positive movement I’ve had was the two months on IV Rocephin. Naturally, the problem with starting it up again is insurance and the almighty dollar.

My days are almost entirely spent in the basement (the cave) where the temperature is cool, and the sun doesn’t dance on my skin. Oh how I miss spending my days outside. My mother keeps me company (from behind her computer). My dogs keep me smiling everyday.  My family and friends keep me going. I will not give up.

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Each day I think I will post, and each day my focus is diverted. So I’ve been off the radar lately.

My new primary physician has referred me out to multiple specialists and for some testing. I wasn’t thrilled to say the least, but it was for the best as they have found a growth on a lymph node in my neck. It was indeterminate with the ct scan. We’ll see what happens with that when I go to see the ENT next week. I already saw the gynecologist and the gastroenterologist and have a future appointment with a Rheumatologist. It’s exhausting seeing so many doctors as most lymies completely understand, but now I feel as though she was right in checking everything to rule out simultaneous illnesses. My next LLMD appointment is Monday. I’m ready to move forward with my treatment regardless of any other processes. Per his recommendations I’ve been virtually gluten-free, reduced my sugar intake, reduced my caffeine intake and have been walking or biking everyday. Some days I literally drag myself and hold on to keep from losing my balance, but I’m determined to fight this. Bring it on; I’m fighting for my life, for my family, and for my friends.


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