Partner’s Health–Modifying Plans

My partner still remains variably ill, from feeling generally lousy to genuinely awful. He hasn’t been able to go to work for over two weeks now. I feel so badly about having him suffer this way, and let me tell ‘ya, it is very hard to feel so helpless (on both his part and my own.) I have faith that we will get through this. Truly… my faith sometimes is the only thing that keeps me from wallowing in despair.

Because my partner has been so sick, requiring devotion of my time and attention to him and his care above all else, I have had to make adjustments to my role with large events in which I am usually heavily involved and that are held in October and November.
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Your Light, Your Love

Guest post by BHD’s partner

This is the first time I have written a post for your blog. I wanted to say in a public forum what I can’t put to words — how much your caring for me during the last year when I have been so sick means to me.

I know that I am not the easiest person to be around even when I am healthy. I know my disease makes me even more difficult. I’m sick, it hurts. I am angry at how long I have been sick, despite all the treatments with antibiotics and supplements that the specialists recommend. I know that I have placed quite a burden on you and our relationship.

As bad as things are, I still see you smiling at me for no reason. You give me that goofy grin or tell me a silly joke or make a pun, just to try to get me to laugh. I so need that, even if I react quite the opposite.

I see you go to great lengths to make me happy. You prepare yeast-free and gluten-free foods for me that you call rabbit food and dislike even the smell of it while you are cooking it. But you do it for me. You have more than adjusted your personal life to center on me and my needs, forgoing all else, including riding your motorcycle as much as you ordinarily would.

Your faith is a tremendous beacon on which I draw hope, when otherwise I have despair. I have not known anyone, including my parish priest, who has such deep faith. I can’t describe it. It’s there. You show it in how you act and what you do — not only for me, but for your family and your senior friends. You’ve said that your faith carries you forward. To me, your faith gives you steadiness in times of tempest. I am truly blessed to be loved by a such a faithful and devoted man.

Beyond faith, you are extremely patient. I know that I have tested your patience, probably every day. You listen to a lot of bullshit from my disease, and let a lot roll off your big, strong shoulders. I don’t know if I could muster 1/10 of the patience that you have. I know you said that you learned patience when caring for your aunt during her decline, but you have more skill and finesse in being patient among anyone I have every seen.

I think it is both your faith and your patience that have cemented our relationship, weathering the tremendous hurricane-force storm we have gone through since last November.

I can’t put into words how deeply I love you. How much I admire your rock-solid, steadfast support, and how superbly you have organized everything for me. You continue to fight my health insurance company’s denials (you are 8 for 8, amazing), taking on that behemoth, uncaring and thoughtless company as if it is a great game to fight and to win. You do that so well by how you document everything for easy future reference and referral.

But most of all, you make it seem as if it’s nothing at all. I know the opposite is true. Your focus on me and my recovery is so much appreciated. I know you have said, “it’s what I do, in sickness and in health,” quoting the line from a common wedding vow. Regardless if we can get married, you live every day as if we are, and show it through your actions.

I LYAWM, always, forever. Thank you is not enough, but will have to do.

Disease Divorce?

My partner and I recently attended a support group meeting for people who have (or have had) his illness. The purpose of the meeting is to share ideas and information about how the disease can be treated, and how its symptoms affect not only the person infected, but her or his spouse and family.

What I heard a lot about was divorce. Yeah, marriage dissolution.

The disease symptoms causes the person with them to behave with extreme emotion at random times with loud outbursts. He (or she) is on an emotional roller coaster, and the extremes are unpredictable. My partner and I have experienced that situation — a lot. We had no evidence, until now, to know that happened with almost everyone with this disease and how severely relationships are strained by emotional outbursts caused the disease’s neurological symptoms. I sure can attest, though, this disease “has a voice” and that voice gets very ugly sometimes.

It really bothered us to hear that more than half of the some 40 attendees at this meeting had divorced or were separated, pending divorce — all due to how the illness causes symptoms that mess with the head, and incite strong arguments, anger, and other problems. Will the relationship I share with my partner be a similar casualty?
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Partner Update

It has been a while since I have blogged about my partner’s long-term recovery from the consequences of contracting a disease from a tick bite. His illness has been extraordinarily challenging for him, and for me as his primary caregiver, best friend, confidant, and health care advocate.
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For Better or Worse, In Sickness and in Health

These are lines from standard wedding vows, and is something that couples say to one another during a marriage ceremony. But these words apply just as well, and in my opinion, most directly, to my partner and me regardless of our official marriage status.

My partner remains sick with a very persistent infection that treatments so far have yet to resolve. For better or worse, I’m there….
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How My Heart Breaks

My partner’s health condition remains a mess. You would think that since we have a good idea what is causing his symptoms, he could receive appropriate treatment. Nope. Such is his life being caught between having a diagnosis with a condition that our Government considers “real” vs. a condition that our Government thinks does not exist. If a condition does not exist, then doctors are not allowed to provide a treatment. Bullshit!
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Detective Work Finds Treatment for my Partner

Last Friday, I had to bring my partner to the hospital because his condition had gotten to be so bad, he needed treatment — at least to get him to be able to sleep, which he had not been able to do. During that day-long hospitalization, he was anesthetized and given many more tests, including an MRI, CT, and a spinal tap. They took more blood than I thought he had.

Tuesday evening, his primary care physician called and said that he wanted to see my partner — at home! Imagine: a house call in 2012.
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Back Home

I am happy to say that as of 7:30am this morning, I brought my partner back home. He was poked and prodded and interviewed and examined by 14 doctors — yep, 14 of them — all day yesterday. Another MRI and a spinal tap and other invasive, painful tests. Fortunately, he was under anesthesia for the worst of it.
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