Communicating with the Enemy

Today I had my second doctor visit of the week, this time with Dr. G my Infectious Disease doctor. It is strange to have an Infectious Disease doctor when my infection is non-contagious, but he gets the job done. He is a lot different from my Infectious Disease doctor in Columbia – in a good way, but that will be the subject of another blog,

The main purpose of today’s visit was to see if I am colonized with Strep B in my vaginal tract. If I am there may be a procedure they can do at the Mayo clinic, which might help combat my systemic infection.

Anyway…the idea of being colonized got me thinking about how I am a host for very opportunistic bacteria. They are thriving on something within my body and I have been thinking of them as a hostile enemy that I am battling.

It reminded me of a Star Trek (TNG) episode where nano-sized aliens were taking over the computer system of the Enterprise. The crew had to figure out how to communicate with them to get them to leave the star ship before their life support system shut down. Of course at the last minute they did, and both the aliens and the crew of the Enterprise went on about their business.

I am not sure if I can communicate with the bacteria in my body, but if I could I would tell them if there is some way we could live together, I would. We have lived in harmony before - many people carry Strep B harmlessly their entire lives. However, if they continue to overpopulate me, there will not be any me. So, I would ask them to sacrifice themselves for the good of their host and reduce their population as soon as they possibly can. Then we too can go about our business.

Sleep Interrupted

Well, I was awake again last night…which gave me more time to think about how I came to be such a terrible sleeper, and I realized that I had two other contributors to my sleepless nights – my stays in the hospital and my bladder pain.

My bladder will definitely be blogged about in the future, because a serious side effect of internal and external radiation is losing the lining of your bladder. I am sure everyone will be waiting in anticipation, but it is a side effect I was totally unaware of that is important for people going through pelvic radiation to know about.

So back to how it affects my sleep…The bladder pain I experience has no warning signs, no way of knowing how long it will last and feels like lemon juice in a cut, along with intermittent painful spasms that I can not compare to anything I have felt before. On top of that it can last for days or  sometimes weeks.

Since I am not very fond of taking narcotics, which is the only legal remedy that has consistently worked for the pain. I have gone back and forth taking the narcotics at different times over the years, but I found they made me lethargic and not at my best mentally. For a long period of time I would not anything for it and would just grin and bear it. During the day I would focus on my work and stay active to keep my mind off it, but sometimes when I could not take it anymore I would go in the bathroom and cry, which made me feel a little bit better, but was not really effective for pain management. At night, I would often lay awake, stay still until I could not stand it anymore and then get up and start working to keep my mind off my aching bladder. Then, if it the pain did not subside after 4 or 5 days I would start taking half a Vicodin, or whatever I was being prescribed at the time, to take the edge off the pain.

The other contributor to my bad habit is my visits to the hospital. Every time I have stayed in the hospital I start to get my days and nights switched around. If you have ever had a stay in the hospital you will know what I mean, they are constantly checking in on you at night, and then about 9am or so, they leave you alone except for periodic checks to change your IV or check your vitals. So, I started getting my sleep in the middle of the day in short bursts. In addition, there are so many sounds (people coughing, machines beeping, etc.) that turning on the TV drowns them out.

Now that I have gotten that off my chest, I am hoping that I will have a peaceful nights sleep tonight. I am envisioning the day where I will again drift off without effort and then wake up right before my alarm at five to enjoy the peacefulness of the early morning.

On Sleep

As I lay awake last night it gave me plenty of time to think about how important sleep is to healing. Since I am technically not back to full strength yet, I am slowly adding back to my repertoire of healthy habits. First came supplements, then Yoga and next week I am going to start working on sleep.

For the record – I love sleep! Before I started getting ill, I went to bed at 10 and woke up at 5 (except when my girls were babies) and thrived on it.

Then, in the Spring of 2004 sleep began to evade me. I started having what I now know are symptoms of type of cancer I was eventually diagnosed with a year later. After a long day teaching school, when I was in bed a night, when my mind was not distracted with a million thoughts, I could feel there was something going on with my body. I would eventually fall asleep, but then I would awake with nightmares and racing thoughts. After my symptoms began to worsen, I started having full blown panic attacks and could only sleep after endless cups of Sleepytime Extra (thanks Celestial Seasonings), sometimes a glass of wine and a friend to hold my hand was also necessary to quiet my fears and send me off to sleep.

When I was finally diagnosed with cancer in March of 2005 sleep became less of an issue. I was on massive doses of pain killers and anti-nausea drugs. The drugs combined with the effects of the chemo and radiation caused me to sleep away most of the summer.

In late July I was finally done with my cancer treatment and, being the type of person that I am, I just quit all of my medication cold turkey. That same day I bid farewell to being able to sleep once again. I would have terrible visions whenever I tried to sleep and once again started waking up in a panic. My doctors prescribed sleeping pills, but I could not tolerate the groggy feeling and, since I was back teaching school a few weeks after completing treatment, I did not feel it was safe for me to be responsible for children and not be at my best. So, I turned to watching videos to help me fall asleep and keep me asleep at night.

I have kicked the habit a few times (2 to be exact) with the help of some good friends, but as some of my friends and family know (sorry I know I have kept you awake sometimes) – I am hooked on it again and have been for quite a while now.

What started me thinking about this recently was talking with Dr. K and she asked me how much sleep I have been getting. She is the first doctor for several years (even though I have probably been to the doctor hundreds of times) who asked me about my sleeping habits. I came clean with her about my less than ideal sleeping routine and when I see her in a few weeks I am to report back to her how much I have been sleeping.

So, for the last two days I have tried Melatonin and it makes me very drowsy, but I still have to listen to something to fall asleep (I am trying an audiobook of Dune) and I still wake up many times a night and am not able to sleep – even if I take another Melatonin in the middle of the night.

So, if anyone out there has any good ideas on how I could sleep – I am taking suggestions.

The Reveal

Yes... I finally have to reveal it to the world. I am fighting a chronic illness. Many close friends and family know about my struggle, but as much as I have tried to hide it or keep on going no matter what, I had a huge wake up call this summer. So, I decided that instead of continuing to hide my health issues and being embarrassed that I can not seem to get well - I would be proactive and become healthy!

I could go back to the beginning in 2004 and recount the process of what got me to this place, but I am going to save that for future blogs as I share my story in hopes that I can connect with people who have found answers and wellness.

The short story is I had cancer (adenocarcinoma of the cervix and pelvic lymph nodes) internal (brachytherapy) and external radiation and chemotherapy (Cisplatin) and ever since my health has been deteriorating.

Like many people in similar situations, I have a complicated health history. The biggest issue is that I have a recurrent strep infection that is becoming resistant to antibiotics.  Recently I had a fever for most of May, June and was finally hospitalized for almost 2 weeks in July.

I would like to say that the caring and concern of my family and friends who have been worried about my health and encouraging me to make my wellness a priority finally sunk in, but they would know that is not true :)  It was a combination of that and my doctors telling me that I only have 2 more options that are available (at this time), if this current antibiotic does not work. One option may not be viable for me and the other will require a permanent IV and will eventually cause organ damage.

So, if you are someone who is similar situation and you have found ways of becoming well again or are searching for answers - I am too.

I have been getting a lot of advice - that is sometimes conflicting - about diets and vitamins, etc. But, what no one seems to disagree with is doing yoga and taking supplements (probiotics, mega Vitamin D, and Vitamin B). One bit of good news (thanks to my wonderful Tomas) is for the first time since 2004 I do not have a vitamin deficiency, even in Vitamin D which I have been extremely low for a very long time. I started doing about 10 - 15 minutes of very gentle yoga now that I have some stamina back and I have to say that I am feeling much more positive and I am hoping to stay on the path to health.