I am so very tired. I experience lots of dizziness, lightheadedness, heart palpitations, chest pains, and cold chills. I was convinced that I was anemic which I thought was probable since I have been bleeding for the past four months. However, I saw the doctor today and for once my results of tests look normal!
I just wanted an easy solution – give me iron pills or give me blood transfusions and make me feel better. But my doctor believes these symptoms are a result of sleep deprivation, toxic chemicals and not being able to isolate one more trigger that is also contributing to these reactions! In the meantime he is urging me to sleep whenever I feel like I can sleep – which would be all day and all night! However, he reminds me that our bodies heal best when it is resting and I need to strengthen my body before I have this surgery
I left his office discouraged. I have so many more symptoms that I haven’t listed and I had really hoped that the ones I mentioned could at least be lessened. I sit here typing hoping that writing down my thoughts will be therapeutic. I can’t help but think of James Thurber’s book Many Moons that I read last night as I continue my goal of reading the Caldecott Meals Winners. The king’s daughter is dying and the king asks her what he can do for her. Her answer reminds me that perhaps I have been putting too much hope in my doctor’s knowledge and his treatment protocols and my ultimate recovery may take something more. I appreciated the daughter’s response to her father when he asked what he could do for her. She replied, “I want the moon. If I can have the moon, I will be well again.” The king must have respected her intuition since he proceeded to call together his physician, his wizard and his mathematician and told them to get the moon for his daughter! However, all these “specialists” told the king this was completely impossible. They remind him of all that they have already provided but this one request is not possible. Those are my doctors these past thirteen years. They have tried everything: sent me on countless tests, have given me supplements, prescription drugs, diets, they have instructed me on how to detoxify my home and have increased my understanding of multiple chemical sensitivities. Yes, these doctors especially my current one, could list their accomplishments. But I am still very ill.
Sometimes I wonder if the doctors hear my list of symptoms but latch only onto one or two of them and try to solve them rather than seeing the big picture. Other times I wonder if the doctors know how to actively listen and whether they ask me enough questions. Or perhaps the doctors limit themselves since they only see my symptoms through the lenses of their specializations. I thought of this when in this children’s story, none of the “specialists” thought to ask questions of the little girl. When I share my symptoms, does the doctor have a preconceived notion of what the words mean that I am using to convey what is happening to me? Only the Court Jester thought to ask the little girl what she meant by needing to have the moon. She told him, “It is just a little smaller than my thumbnail, for when I hold my thumbnail up at the moon, it just covers it.” That was quite a bit different than how the court’s specialists perceived the moon and their perception prevented them from giving this girl what she needed.
After the Court Jester created a small bronze marble- like moon that she could wear on a chain around her neck, she was healed. I like to think that this little girl understood intuitively that her illness needed not just what doctors could give. She needed a miracle. Perhaps, she thought, if you can find a way to give me the moon, I know what was once impossible – my healing – will become possible.” But she also perceived the moon – her miracle – to be in her grasp. Is it a little like me as a Christian who believes that I serve a God who can do the impossible and His intervention is possible since I believe He dwells within me? Dear God, today I really need a piece of the moon.
If you don’t usually blog about your health or the health of someone you know please don’t let this put you off from blogging about it in May. Your post can help us raise awareness amongst an audience who may not usually hear about this group of conditions.
As I’d mentioned in my latest fun facts/trivia post, some people with RA can run a cross-country marathon, others are wheelchair bound, or have total joint replacements before the time they are 18, yet others make careers out of being personal trainers or physical therapists. Some people say you can die from arthritis….other people believe it is merely an inconvenience and not a terrible diagnosis. I suppose, it is all in perception and varies case-to-case. Both of these assessments can, in fact, be true. But, that being said, neither have to be true.
physiological and biological makeup is different – even down to the cellular level!
I suppose what I am trying to say is that you shouldn’t judge people. Just because someone has the same condition as you does not mean that they feel the same as you, or are physically and/or emotionally handling it as well as you. Not to preach, but, we should all remember that. Every person has their own unique set of circumstances and complications, and, every person – sick or not – has their own set of problems in life. As they say, life isn’t fair…and so, we make the best of it! 
marathons (such as Patrick who is running a cross-country marathon for JRA!), people became yoga instructors despite their disability, and those who continue with professional sports or dance careers despite their condition. I am happy for these people, and I support them – for I feel that it brings hope to us all – and isn’t that what it is all about?
who can relate to our situation. Some may have it better, some may have it worse, but when it comes down to it, we’re all in the same boat … or, at the very least, in different boats, but all in the same river….which, hopefully, will eventually lead to relief and a better life for us all.
You’d be surprised at all the first-hand accounts and personal stories that people are willing to share about their illnesses, even if just online! I think that if you can find a good support system of people who can commiserate with you and share their outlook and/or opinion on living with arthritis or related illnesses, that you’ll only benefit! It is hugely beneficial to share, and hugely beneficial to learn by taking in what others are sharing – whether it is struggles, triumphs, or, simply a news article or piece of research. We all need someone to lean on, and together we can form a community of people who understand and embrace one another! We all have our own unique stories to share, and we should all be respectful that…..as we learned from Sesame Street as children, we are all different, special, and unique! Understanding and acceptance are important. Make sure that your family and friends are aware of this, and if you feel that they do not understand your particular case, explain it to them! Communication is a key factor in all relationships whether romantic, familial, friendships, or professional.
~ Ashley Boynes