The other night I bought a present for a friend of mine. At the last minute I decided to give the gift to someone else. Now I'm regretting that decision, before I spent money on the gift certificate I debated whether I should put that kind of money down. A while ago I watched this video about the head heart connection, essentially the video encourages people to do what their instincts prompt them to which is what I ended up doing.

When I arrived at work the other morning there was a present waiting for me. It wasn't wrapped, it used to belong to someone else but it ended up on my desk because a friend of mine put it there. I've been doing a lot of thinking recently. Some of you already know that I was diagnosed with several auto immune disorders. I've been dealing with the physical effects for years, my physician told me I had tested positive for two conditions, handed me a pamphlet on Sjogren's syndrome and walked out.

I left that appointment with five prescriptions and at least that many referrals. Since then I've had an echocardiogram, a pulmonary function test and I survived a consultation with a hematologist/oncologist. Auto immune symptoms can mimic those of cancer so people are strongly urging me to take medication. Once the managed care services department learns that my insurance company will pay for a CT Scan I'm supposed to call and make an appointment but I don't think I'm going to.

The past few weeks have taught me that it is easy to get drugs and difficult to get treatment. After the rheumatologist explained that one of the medications she was prescribing could affect my vision I asked what would happen if I didn't take it. I doubt the hematologist was trying to scare me when she explained that I could be crippled within two years because auto immune diseases can strike with considerable rapid force but I think there is another answer beside drugs.

A woman in the medical records department thought I was a minor. My heart, lung, liver and kidney tests came back normal. My cholesterol has dropped and my vitamin and mineral levels are good except for a Vitamin D deficiency. Lately I've been considering the difference between a healthy lifestyle and a strong body. One website I found gave me words to ponder when an article explained that people in your family may accuse you of being lazy because you might look fine on the outside while inside things are not so good.

It is difficult to explain how auto immune disorders change virtually every aspect of your life. Every morning I wake up feeling much older than 36. I don't wear makeup or put products in my hair, people have asked what I put on my skin, they laugh when I say as little as possible but if I stripped off my clothes I could show them skin irritations that the dermatologist wants to treat with steroid creams that really don't help. My digestive system doesn't work the way it should so I wonder, am I gluten intolerant because my body attacks itself or has do I have auto immune disorders because I can't absorb the nutrients my body needs to function properly?

Apart from the hematologist not many of the practitioners I've seen have been empathetic. They hand me diagnoses without educating me and let me leave without giving me any practical advice on how to cope with a diagnosis that is new to me. No one has discussed my diet, not even my GI doctor who ordered a series of tests that I don't think I really needed. I thought he was going to check for damage of the villi, when I asked about that he told me that if your body reacts predictably to gluten exposure you have to accept that a patient is gluten intolerant and further testing is probably not warranted.

At work my department acquired a guy who is going to be with us part time. Monday through Friday I wake up, go to work, manage to get through each day and come home an exhausted wreck. For most of their lives my children have not had the kind of mother I wanted them to have. When my youngest was a baby we took her to practically every specialist under the sun. My oldest daughter was not a healthy child, I see things in them that concern me however when I asked about my children and the genetic link to auto immune disorders I was told 'not to worry about it'.

I was told not to worry when I had to schedule an appointment at the Vince Lombardi Cancer Center. I've walked around a brand new medical complex wondering at the degree of unhealth among health care professionals. Before my former boss had breast cancer, before my friend's husband told me that he had cancer I knew that those people were not healthy. I may not have the formal training a lot of others have but I can recognize when things are off. That bottle on my desk represented an effort on the part of another. It was for me and so was a note I found the other day.

People at work have been supportive however I have to find some way to explain that working part time is what will be best for me, them and my family who is lacking some of the things I could be doing for them. Mother's Day came and went, my mother hasn't done much to really support me through any of this and that hurts more than I'd like to admit. My mom asked if there was anything she could do. I could ask her to release me from my debts, I owe her money for health insurance premiums and I typically don't go back to things I've written in the past but I could laugh hard about how worried I was about the medical expenses I had formerly.

A good friend of mine who happens to be a customer told me that she was diagnosed with ovarian cancer and interstitial cystitis. In her home country she was a veternarian, now she is an orthotic and mastectomy fitter as well as a good sounding board. She gave me some tips and some supplement ideas. Talking to people like her is what makes work less of a job and more about reaching out to people that I can connect with.

One of the outside sales reps put his number on an account that I had been working with. I get frustrated because I feel like my successes are not being recognized while my habits and work ethic are being scrutinized. Things do unexpectedly work out however I wish that people would understand that the way I feel has a dramatic effect on my ability to communicate effectively. My department is getting a guy that asked me out. Another coworker of mine said that I must have encouraged him which hurt because I don't believe that I did.

A book that I read a while ago had a character who lost substantial amounts of weight. In the past I thought that being thin or having more money would solve my problems. I thought that I was lazy and I accepted other people's ideas about me and my life. Lately I've been standing up for myself more. I haven't told anyone to fuck off yet and maybe I won't because I am suffering and I think to myself, maybe other people feel the way I do. Other times I decide that I have to choose my battles and those people aren't worth the time.

Always I have this vision that one day my body is not going to hurt. I think about being able to run and jump or type or sleep without pain. I dream about having enough tears, functional adrenal glands and preserving my girls from things I've experienced. My close friends at work are willing to walk in the shade with me, I'm supposed to stay out of the sun because that can cause a flare up which makes everything worse.

Through all of this there have been times where I have felt at rest or at peace. I don't really care if I do have cancer, if I do then I do and I don't think that I would do chemo or radiation because my body can't handle anything else right now. Every time I hear a new term I go through the pain of denial, I rage, I grieve and eventually I start reading up on things because I want to be an informed patient. I've learned a lot about my body, health and healing which has helped me in ways I didn't think that it would.

My children have been dealing with this as well as they can. It's sad that they are used to their mother crying in the bathroom and going to bed before they do. I'm a freak about the things I eat and I try not to let that interfere with their diets too much because undue stress can aggravate you without actually accomplishing anything. I have relaxation CD's that don't get played as often as they should. I try to walk and I'd like to get back to the gym but I need someone to evaluate me and help formulate an exercise program that is challenging, strengthening but not exhausting because my body can't be relied on to tell me when it's had too much.

I've been trying to get to church on a more regular basis. I've prayed that God will give me answers if he doesn't want to send healing my way. My massage therapist told me that I am on the right path and my nurse practitioner has given me some good advice and reminded me that years of damage takes years of undoing. Overall my life has changed for the better. At times like this that is hard to remember but now I am beginning to realize that my job is just a job while my children will only turn ten once.

I could go blind, I could eventually end up crippled but some of the things I've been taking have reduced the swelling and given me a measure of pain relief. In a way I realized that I am tougher than I thought I was. I've learned to treasure the soft, the gentle, the restful and peace filled. Hurts of the past have gone because I don't have energy to hang onto anger that only damages me. My voice has improved, before I learned why my left ear doesn't work properly I didn't know I couldn't hear things the way other people do.

Singing is fun even if I'm just learning how to embrace a life that includes music. I want to believe that I will continue to discover new talents and it has been interesting to see how some of my fictional characters have expanded and become more concrete as I go through this. I'd like to write more but a big part of this is recognizing my limits so this is goodbye for now. Even though the diagnosis is new the symptoms are not so it is strange to me that I feel so differently about myself. I'm having trouble reconciling what I know about what I thought I knew so if I am not myself I guess that's the only explanation I have.

Until next time, peace be with you.


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