The H Word

I'm sitting here in the USAirways lounge at the airport in DC and I find myself staring at the screen, resting my chin in the palm of my hand. There is so much that I have to say and yet, it's so hard for me to even process some of it that I am struggling to find words.

It's been a horrendous cycle, but there have been many blue skies, such as my mind feeling more clear than it has in years, even when I have been in bed. While completely exhausted in some capacity all the time, I have been able to survive the past 3 weeks with just one nap. That is UNREAL in my world. SO yay for that. And then there is the fact that my body temperature, which once was a steady 95.2-95.6 at all times (hypothermia) has now stabilized at 98.5 thanks to Clonodine, which I have taken for over a year now and no long need. THAT is huge.

I survived the holidays quite well. I needed a lot of help with Mini while she was on vacation from school, but my mood was quite good for most of it. I recall feeling overwhelmed a few times and my mom actually calling me a witch at one point, but I'd rather be a witch for an hour or two, than a complete bitch all the time, like I used to feel.

This has also been a completely traumatizing cycle - the worst of any I have had yet. You have read the gory details and I have no desire to go through them again, but it's been hard. And today a new possible reality slammed me in the face with one word - HYSTERECTOMY. Now, I am not looking for anyone's advice on this or opinions for that matter. I have a few very trusted friends who have had them that I will be speaking to, but the fact is that I have had several major complications through the years with female reproductive issues (which had nothing to do with how I chose to become a mother) but have now presented the possibility that it might, in fact, be the easiest thing on my body if I have one. Of course, I have an exam scheduled and I will seek several opinions, but it makes sense as to why my sacral pain, with all of its open nerves being compressed by what I realized was probably an encore of my Lyme in the Coconut chapter of the book.

For several months I have had excruciating sacral pain and because the CT scan and X-Rays came back clean (I did end up with an arthritis diagnosis in my thoracic spine), and because the pain is so much worse when I have my period, rare since I have an IUD, it seems likely that I have another sizable cyst or endometrioma growing again. It's a huge and very personal decision that I don't know if I will have to face or not, but it has me teary and taking deep breaths.

Dr J and I agree that had this pain not been so disruptive during the past 2 months, that I would likely feel much better than I do now and we feel it is interfering with my treatment. So, after I return from a MUCH needed vacation, I will go in for yet another vaginal ultrasound and see what the verdict is.  I have pretty much accepted that if I have a large cyst again, that I will likely have a hysterectomy. If that is what will give me a chance at a more normal life, then I am OK with that.  I have been blessed with a beautiful daughter and cannot ask for more than that other than to actually have the ability to be there with and for her as much as I would like to be.

So, the H word. Sigh.

The next unfortunate piece of information is that despite all of the hell of last treatment, I am going to do it all over again. Dr J's theory is that we just need to bang this Babesia treatment out HARD, adding Doxycycline (infamous for causing gastrointestinal havoc), to slam it out once and for all, then start lightening up on treatments. I fear this means another cycle of hell. I actually pretty much know it will be, but if it's my ticket to starting to slow things down, reevaluate, wrap things up and move toward remission, then sign me up.

And there is so much more to write about, but those are the two biggies. I'm going to have at it AGAIN AND there is a new organ on the table for possible removal, but really at this point, what's another organ? ;-)  I'd write more, but it's time to wrap up and make our way from this quiet and lovely lounge into the frantic cold loud terminal which sets me off. I wish I could just teleport myself to my bed. I'll write more when my thoughts are sorted out and I feel emotionally up to it.