Learning To Live With The Wolf
After many, many months of mysterious medical symptoms, ranging from what I thought was a sudden attack of Gout (no, I do not come anywhere near the profile of who might have that, but it sure looked like it), to unexplained sores on my scalp and roof of my mouth. In addition to, mysterious inflammation around my eyes (termed chicken eye at the time, since I thought it was a due to my food allergy to chicken) and low grade fevers with no apparent illness present, joint pain and inflammation throughout every small joint in my body, along with strange illnesses that would come after sun exposure. Additionally, there was unrelenting fatigue and breathing problems and more. Trust me, I could continue. Sometime last February, I was diagnosed with Lupus (or its “closest cousin that we haven’t named yet”, according to National Jewish Hospital in Denver). Lupus or Latin for Wolf.
It has been a long road. Both getting to a diagnosis, then trying to understand what that meant, to pretty much ignoring that it was real and finally, succumbing to being completely overwhelmed by what that means and what it may mean down the road.
If you have read my blog before, you know I have had nearly 6 years of ongoing health issues of some sort or another. Some may be related and some may not, but if you do follow this blog, you know I have tried to be honest and open about the challenges of dealing with it all.
I have not done a great job this go round dealing at all!
Lupus is a really bizarre auto-immune disease.
The U.S. National Library of Medicine defines it as follows: Systemic lupus erythematosus (SLE) is a long-term autoimmune disorder that may affect the skin, joints, kidneys, brain, and other organs. Symptoms vary from person to person, and may come and go.
The medical dictionary defines it as: systemic lupus erythematosus (SLE) a chronic generalized connective tissue disorder, ranging from mild to fulminating, marked by skin eruptions, arthralgia, arthritis, leukopenia, anemia, visceral lesions, neurologic manifestations, lymphadenopathy, fever, and other constitutional symptoms. Typically, there are many abnormal immunologic phenomena, including hypergammaglobulinemia and hypocomplementemia, deposition of antigen-antibody complexes, and the presence of antinuclear antibodies and LE cells.
Whatever all that means. I know!
It seems as though no two people have it the same. At first, after dealing with all the mystery and feeling crazy because it takes a very trained doctor to identify this disease, there is a sense of relief in the knowing.
That is short lived, however, at least it was for me. Knowing is great because you can then begin to figure out how to feel better maybe and frankly, with the knowledge that there is an explanation, the feeling that you are crazy dissipates. That alone is a huge relief.
Then reality sets in, though. I think I had become used to the idea that when a problem was found, my doctors would cut it out. Literally. While I was tired of surgery, it became a familiar drill and the time frame was usually a known entity.
Being told you have something that cannot be cured and they don’t know what causes it, leaves you realizing that there are no known’s. I have a propensity to worry. The first overwhelming worry came in the form of a need to do a million things. Things that I had been hoping to, but never had the chance to, thus far in my adult life. The worry stemming from, “what if I won’t feel physically able to do this a year from now”?
Then the worry became, about the pressure there is with looking normal and feeling awful. I have shared this with several friends, who all said, that’s in your head, but upon meeting others with a similar disease, they too, had the same feeling. People cannot see you are not well, most often, with this. In fact, I often joked with close friends, that the sicker I got the better I looked, because oddly people that I hadn’t seen in a while commented on multiple occasions how ”fantastic I looked and what was I doing?” The pressure is in the fact that each day I do not know what I will wake up feeling like. Making plans became hard. Feeling reliable became hard. I had anxiety about weekends planned with my boyfriend (as we were still living in two states) and then, upon arriving, not feeling well, or not being able to keep up. There is anxiety when you exercise, because you must keep doing something, but there is a fine line between where enough and too much are and the line keeps moving.
There is so much to say about the transition into living with a chronic illness, that I will probably write in installments. For now, suffice it to say, I have not gone through this process the way I would have hoped. I like to think I am self aware enough, strong enough and resilient enough, to have traveled through this journey with grace. I don’t believe this is the case, though. I look back at how difficult the last 8 months have been, since my last bout of depression and this diagnosis, both in February, and I am frustrated with myself.
All the tests, different specialists, tubes and tubes and tubes of blood, side effects to some of the treatments and diagnostics, and hours upon hours in medical centers, multiple organ biopsies and scans have me back facing, not only this new part of my life, Lupus, but depression again. I am grateful for the early-ish realization that it was returning, as I am already treating that and beginning to feel a little light in that dark tunnel. I am, however, honestly, wondering if I will know any long-term relief from it, or if it is just to be an expected part of it all?
Tomorrow is my 48th birthday. I was supposed to be spending it on vacation. I am not. I am here. At home in beautiful, magical Boulder, waiting on the first real snow and the formal beginning to my next year. I have my birthday wish all ready to go (can’t tell you or it won’t come true) and truly the most amazing group of friends around me. I have my two teenagers that are both bigger than I am now, and recently, have shown a compassion for my ongoing medical issues, that is far beyond their years and leaves me beaming with pride, at the adults they are becoming before my eyes.
We enter the period of Scorpio this week and it is the time of death and rebirth according to the Astrological charts. According to a noted astrologer, “Scorpio, one of the most complex of the zodiacal signs. Life, death and resurrection are inextricably linked to Scorpio. Powerful, instinctual Scorpios sting and destroy, but as their natures evolve, they also rebuild and create. It is significant that this sign has not one symbol, but three: the Scorpion, the Eagle, and the Phoenix.” And, so, as I continue to evolve as a person and as a person learning to live with the wolf, I am looking toward tomorrow, as yet, another rebirth out of the flames.