For more than a decade, I suffered from numerous mysterious or rare maladies. I saw internists, gastroenterologists, endocrinologists, chiropractors, orthopedists, neurologists, neurosurgeons, pyschiatrists, phychologists, dermatologists, urologists, osteopaths, and then three rheumatologists. Some of them offered relief for my symptoms, but no one offered a cause.
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Getting through the Rough Times
Getting through the Rough Times I received this wonderful note (below) today from a friend who also battles Lyme disease. Both she and her boyfriend have been in treatment for a few years. I bring this to light not to brag, but rather I wanted to contrast it with a chapter that Jeff wrote that will be going into Lyme Savvy. Realistic or not, numerous people have assumed that Jeff and I have always been “on the same page” together and that we have always been 100% supportive of one another. When someone mentions this to us, we try to give a realistic picture of our relationship. We don’t want to be on a pedestal. We have spent years struggling to keep it together. We just happen to be in a really great place right now. So now you can see the big picture: the good, the bad, the ugly, and the profoundly amazingly wonderful. It was very hard for me to read through the first part of Jeff’s chapter. Those moments are still stuck inside me in a very tender place. Even knowing where we are now, it is hard to take that look back and remember. But remembering allows me to cherish how far we have come. If you are struggling in a relationship, know that if you both want it to work and you both are willing to do whatever it takes to make it work, you CAN make it work and you can succeed as a couple. Hang in there. “I wanted you to know, that X and I would not have made it through much of the "bad days" (or months, or years?!!) without your loving advice. We always looked up to you and Jeff so much as you all stuck by one another's side through it all. All of the advice you have given us over the years has really paid off. I am so glad that you were there from the beginning to support us and encourage us to just be there with on another. Because we did that, we never thought of our "bad (physical) days" as "bad days" because we were together, doing what we could to make the other laugh.” One Spouse’s View – by Jeff Rainey I sat in the marriage counselor’s office listening to my wife talk about having no energy, explaining that she can’t get out of bed in the morning, because she is up late into the night unable to sleep. She complained about pain in her feet and legs, her hands and fingers hurt to the point that she couldn’t knit or needlepoint anymore…. As she continued I found myself thinking: She has been sick or had health complaints for all but the first two years of our marriage. I am drained from it. I get up every day and go to work, come home and do all the things she can’t or won’t do because of her “issues.” It has taken a toll on our marriage and on me. I love Sharon, but this seems like it is never ending, one issue after another and tears….I am beginning to disbelieve these never ending issue from migraines to weird pains, stomach issues. Will this ever end? When the marriage counselor turned to me I asked, “Can I just come see you by myself?” She agreed. In that private session I admitted, “This is a no win for me and I just don’t know if I can do this anymore. I look at Sharon and feel the wind get sucked from the room. I feel her collapse both physically and spiritually, but I have had enough of this. I have nothing more to give.” I believe marriage is a sacrament – for better or worse, in sickness and in health, all that -- but at this point it had taken all my fortitude to stay in this marriage. The next counseling session was filled with the negative emotions coming out of me like lava from a volcano. I hadn’t realized how much bottled up anger and pent up frustration I had. Sharon’s multiple health issues, never wanting to go out, can’t get up in the morning and I’m a morning person. She is not giving me what I need. I heard myself say that I was prepared to leave the marriage, because my world was being reduced on a daily basis. I didn’t have a marriage partner. I was a nursemaid and caregiver for someone that I thought was an attention-seeking complainer. The next meeting with the counselor included both Sharon and me. “We need to figure this out… or to figure out how to part ways with a plan to support our son,” I stated flatly. Sharon was hurt and I was mad as hell. The anger I felt was volcanic and burst from me as I spewed that I was too tired to keep this up. Sharon had been to this doctor and that doctor; each one costing more money and more time away from work -- which meant she was unavailable to me and our son. I was very put out by all this. We had a few more uncomfortable counseling sessions. Our marriage hung in the balance. Then a doctor diagnosed Sharon with Lupus. She was, once again, in tears because by this time she was beginning to think she was crazy. Frankly, I was beginning to think so, as well. We talked about this diagnosis and about us. Sharon told me she was willing to work on us but that it would take two to make it work. I agreed, but in my mind, it was because she actually had a doctor put in writing that she indeed had Lupus. This was in July 2009, but soon we found this wasn’t the case – she did not have Lupus --and the see-saw resumed. I had my own health crisis, too. I was attacked by yellow jackets in the woods behind our house. In the course of trying to escape I stepped into a deep hole and broke my leg in 12 places. The leg was surgically repaired with multiple screws and a titanium plate. They cut me open along my kneecap for 10 inches. I was restricted to bed and a wheelchair, rolling myself out onto my deck and watching the world for 12 weeks. The surgeon warned me that if I placed any weight on that leg before the full three months passed I was putting myself at risk for amputation. I was dependent on others and especially Sharon. It was not a good thing for a person like me, who is always on the go and never sitting still. One day I rolled out onto the deck and was surrounded by mosquitos. I didn’t really think much about it. Days later, I had a huge welt-like pimple appear. The doctor gave me antibiotic injections and said I would be fine but they were worried about MRSA. The recovery from the surgery was long and filled with issues including a deep vein thrombosis (DVT) in my leg and the possibility of death from a Pulmonary Embolism and a general feeling of unwellness continued for a full year. During this recovery period, the anger I spoke of earlier seemed to well up more often and at the most ridiculous times. Often, I had no memory of why I was mad, but I felt fully justified. This seemed to play well with Sharon’s ‘illness’ and was often a topic at our counseling sessions. As we continued going to marriage counseling, Sharon and I talked about our marriage and our commitment to each other as a couple and as parents. We promised to work on and in our marriage; but now we were both struggling health wise. Then Sharon’s uncle, after hearing all her symptoms and health history, told her firmly she had Lyme not Lupus. Sharon’s aunt had been misdiagnosed with ALS and ended up dying from complications of Lyme. Her uncle had become a self-taught Lyme expert and swore to help everyone he could. I firmly believe he saved Sharon’s life. She met a neighbor, who was seeing a Lyme Specialist -- Dr. M. Under his care, our lives began to change. Soon after I was able to return to work, and Sharon had a diagnosis that tied her issues together. Her treatment protocol was one we believed in. By this time we were working well as partners again and supportive of each other. I was totally dependent on Sharon during the year following my surgery and there was no doubt as to her love for me, nor mine for her. But unbeknownst to me this illness had infected all three of us. Not only had Sharon been diagnosed but our son, Stephen, was, too. Now they were both being treated and making progress. In January 2010, I was diagnosed with Bartonella and began treatment, as well. We knew we would need to strongly bond to make it through this horrid illness. To spouses, partners, significant others I want to say: It is so tempting to want to give up on each other, to walk away and just end it. The fear and feelings of failure can constantly prey on your mind. When an illness becomes a central focus of life, it can be easy to feel that you are no longer important to your partner. Or that this wasn’t the trip you signed up for. I have been there more than once. Don’t give up. When the going gets tough, go deeper. Reach into your spirit. We prayed. I prayed. We talked a lot about us and getting through the hell our lives had become. Talk is good. Accepting that a good relationship is like a marathon, not a sprint, is crucial. The treatment knocked the heck out of Sharon. She was bedridden for days at a time, unable to work, barely able to walk, often just lying in bed, eating and going back to sleep. I had very few problems with the treatment and medications. We just did what we could and kept holding each other and talking about what was happening so we could support each other. This went on for 18 months or so. There were lots of up and downs, including some very low lows during those months. One of the ups – thank goodness for those! -- was that within four months of beginning treatment my anger left me. It was and is completely gone. Dr. M believes I have had Bartonella for years, since I too had the multiple hide- and-seek issues that can be part of Lyme Disease: - heart palpitations - arthritis issues - joint issues - sudden intense pains - cluster headaches and - chronic sinus issues All of these started cycling through my life from about 24 years old. Back then I was told I would be in a wheelchair, because I had arthritis in my hip so bad. Then, it disappeared. I’m sure the lengthy infection directly and adversely impacted my life and my relationships over the years. It is work, hard, daily work, to support and love a spouse, partner or family member with Lyme and co-infections. But it is vital. Every patient needs and wants to be loved and believed. They are not crazy, or just “attention seekers.” They are not making this up. Each and every symptom is real. They are in pain. They are confused. They have very real problems making simple decisions; even the day-to-day decisions are difficult. It is hard to describe the exhaustion because it is so bone and soul deep. The look in the eyes of the infected is deep-set and far away pain and angst ridden. The hurt is deep. Often, the only thing that helps is to hold them and reassure them that they are loved and that you will be there for them. It is that depth of unconditional love that we must wrap them with. Love and care is healing.
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