Wednesday, January 21, 2009

My trip to the ICU

About 10 years ago, I was working for as a research assistant for a company doing research at Stanford. It was a very enjoyable job. It was stress full, and the hours were long, but I helped save lives. I also had amazing access to top doctors. When I went into arterial fibrillation with a tachycardia rhythm of over 250 beats per minute, the doctors in the Stanford ER were able to convert my heart to a normal rhythm within a few hours. After several trips to a cardiologist, and all kinds of test, nothing was found. The doctor told me that I need to get more exercise , better sleep, work less and avoid stress. Nothing was wrong, it was an unexplained event. I didn't really think that was a good answer, but it was the only one they had.

For 10 years, I didn't have any heart issues. There were a hand full of times I felt tired and light headed and was told to go to the ER to get check out because of my history. Nothing. Until last Saturday. Now I have had other heath problems in the last 10 years. I have Fibromyalgia and Lupus, which has caused all sorts of problems, including arthritis. My current doctor, who is normally very vigilant, and a good doctor, started me on a new medication for the arthritis. Unfortunately it increases the risk for heart attack and stroke. I didn't think anything about it since I have never had either of these issues. Unfortunately it reacted badly with what I am now being told is Lone Aortic Fibrillation Disorder. Basically, it means that my heart can slip out of rhythm for no real apparent reason. The new arthritis medication didn't cause the arrhythmia, but it contributed to the problem. So now I have to get a full cardiac work up. The best case scenario would be that I don't have to take any heart medications, and that I will only need to be monitored occasionally. At worst I will need surgery to relax the muscles in my heart, or possibly a pace maker.

The worst part of the experience was the effect it had on my boys. I am a stay-at-home mom to my ID twin boys who are 20 months old. They were with my when it started. We were only a few blocks from the church where my DH was working. Thankfully I was still able to drive. If I had to pull over I would have had to call an ambulance. He took us to the ER, where I almost fainted. I ended up laying in the middle of the ambulance bay, waiting for them to come out and get me. My DH was getting the boys out of the car in the parking lot. I told him I was feeling fine, but as soon as he pulled away, I almost collapsed. The boys saw me in the ER, and both of them freaked out. Joseph is more sensitive, and he was screaming so I told my DH to take them home and ask his mom to come over. We live out in the country and it took him almost 2 hours to get back. The next day, because we didn't have anyone to watch the boys, my DH brought them to visit so he could at least see me for a few minutes. They were both upset, and Joseph was clinging to my whimpering.Every time one of the machines beeped he would scream. That night (Sunday) he was crying when my DH went to put him down for the night and kept asking for mama and saying "mama medicine". On Monday when they picked me up from the hospital, I thought that little boy was going to explode. He wouldn't let go of me, or let me out of his sight. If I so much as went to the bathroom, he would scream "mama no bye-bye". They have both been very snuggly with me, and have said "mama medicine", and "mama no bye-bye".

My hope is that I will be able to get my Fibromyalgia under control without medications, or at least find one that won't have such severe side effects. I also hope that I will be able to take care of my babies. The exhaustion this week as been unexplainable and unbelievable. I love being a stay-at-home mom, and I love my babies more then anything. I just want to be healthy and my babies to be happy. I don't think that is too much to ask! If you read this please say a prayer for me, and for all moms who live with a cronic illness.

Sunday, January 11, 2009

Bikes in the Vineyard Part 2

Bikes in the Vineyard Part 1

Flesh is Weak

This last 16 months, since I was diagnosed with Lupus, have been some of the most frustrating of my life. Although, there is now a known cause for my episodes of exhaustion, my headaches, joint pain, muscle pain, even blurred vision and miscarriages, the calm has not arrived. Usually, for someone who has suffered a long illness, a diagnosis brings relief. I can not say this is the case. I have been given a diagnosis, but I don't fell I have been given much else. I am supposed to stay healthy, get exercise, and try to avoid getting any cold, flu, virus or other infection which could aggravate my immune system. I also should get plenty of rest, and avoid stress. All of this is easy for a stay-at-home mom with toddler twins.... oh wait, that would be if I lived in an alternate universe. In this one, it seems almost impossible. Most days, I feel blessed to have made it until my wonderful husband walks through the door.
The past few weeks, months even, have brought a deepening exhaustion. I've taken up coffee. I never really drank coffee before. I tried it in college and became so wired I could not study. All nighters were useless. I do drink soda, often two or three a day, but in comparison to a good cup of coffee, the caffeine doesn't add up. These days I am at two to three cups of coffee to make it through the day. I sleep 8 hours a night, and still find it difficult to wake up, let alone get out of bed. I eat well, get a bit of exercise and plenty of sleep. It doesn't seem to help. The doctors solution is medication. I'm not ready for medications and their list of side effects, not to mention the increased risks they bring.
The most difficult thing about Lupus is convincing people I have it, and that it can be devastating. Having only been diagnosed in the last two years, friends and family are still learning about Lupus, and what a Lupus diagnosis means. For the most part, my Lupus flares have been mild to moderate. I am always worried that they will get worse, and not taking the medications will no longer be an option. I am always worried that I will become so ill that I will not be able to care for my children. Some days, I feel like I don't do everything I could for the Snuffins. They would definitely like more trips to the park, more time playing in the vineyard, or more rounds of 'Break the Mama'. My exhaustion has already had a negative effect on the state of my home.
I get the impression sometimes, that people see me as lazy or selfish, because they don't understand the extent of the illness. This is the most frustrating part. I want to be one of those people who claims that other peoples opinions do not matter, but I am not. I don't validate myself solely on the opinions of others, but as most people, I want those opinions to be positive, to reflect the reality of my condition and personality.
My flesh has been very weary of late, but my spirit is optimistic and guided by the Father's will.

Friday, January 9, 2009

New Year

At the onset of a new year, it seems like everyone begins to talk about life changes, resolutions, and new starts. Me, I'm just struggling to keep myself upright and moving forward. I have wanted the same things for quite some time, the new date on the calender changes nothing.

I want a well organized house. Hopefully this isn't as far off as it seems.
I want to be able to cook dinner every night, unless my husband wants to.
I want to have more time to knit, not just things from magazines, but my own designs. I also need time to get those down on paper before I forget them.
I want to be able to explore my love of photography.
I want to build a loving home that is a safe place for my family to grow in, go out into the world from, and be a safe place to return to.
I want to follow the path that the Father has set before me with faith, love and grace.
I want to live well.