Check in and current treatments

Today, I'll give you an update on my current treatment and health status since the last entry I posted was a bit like a 5-year old temper tantrum on the inside working its way out. Honestly, I debated whether or not I should delete that last post but decided to leave this authentic part of my emotional experience raw and unedited. I'm committed to being real and attempting to be shameless in this vulnerability with the hopes it will accelerate my recovery and help someone down the road. 

The emotional toll on my relationship has been intense in the last few months, as our small nest egg is dwindling too quickly under the burden of medical expenses. My partner has been nothing short of a saint, stepping up quickly to bypass his summer holidays to teach, which thoroughly broke my heart. The burden of my illness often feels like it's too much for me to bear, until I see the impact on my beloved and am slightly ashamed of my self-absorption. I think the care-giver has the hardest role here. I wouldn't wish it on anyone and yet, circumstances propelled my beloved headlong into it and I was powerless to stop it. We know we need to stretch ourselves and get creative to make this whacky life work for us and we're committed to try.

My current treatment is fairly complex and it's notably working! I am getting better!! I keep a TBD Diary. It is a list of my specific symptoms and I check a box for each day that symptom is a problem, double check it for a day that notably impairs my abilities, and 3 checks to signify it debilitated me. The first several weeks, each symptom was checked every day to some degree. Now there are big gaps of empty boxes, and I honestly don't think I would have noticed myself getting better without this log, as the progress is incredibly slow and I am still undoubtedly disabled.

I'm very grateful for a conversation I had with my mother a few years ago when she told me that there is a trend to find doctors that are team players instead of patients relying on just one doctor to be the know-all, be-all (and let's face it, as much as some of them think otherwise, they really are just human.) I took that advice to heart and put together an amazing team that relates very well to each other and respects each others approach. None of them claim to have all the answers, they are open-minded, stay informed about my treatments, and so far, no one has stopped investigating my case resting on the laurels of a diagnosis. It's amazing and such a different experience than the last time I went through this in the 90's and early 00's.

The gemmotherapy, homeopathics and other natural medicines I'm taking seem to be improving the effectiveness of the pharmaceuticals and I think we have a spirochete-butt-kicking love connection. I also know that optimism can be dangerous with this messed up disease. I remember thinking I was getting better way back when, only to get struck down over and over - just when I'd get on my feet, another wave would hit and that went on for 7 years. This time around, call me cautiously optimistic and deeply, deeply grateful for my friends, family and the support I receive.

My eternal gratitude also goes out to the people who know to ask "Can I get you anything?" instead of asking "How are you feeling?" I've begun to really hate that question when it's asked in greeting. I know this is a way people show they care and I appreciate it, but it is a delicious relief to have the burden of the question removed sometimes.  

Finally, I think I have found the perfect therapist for myself at this time and am both anxious and excited about my next appointment. It was a total pleasure spending time with the guy during our first appointment. He is a grief specialist and musician and seems to be humorously liberal. Part of me is very excited to do this healing work and part of me is totally terrified of the abyss. Nevertheless, I shall leap into my healing with both feet, casting my fate to the wind, with a prayer for a sail.  Now, JUMP!!

"Better out than in," as Hagrid would say...

Today's post is less wit and wisdom, and more whining. Better out than in. The latest news is annoying, with a sprinkling of hope and faery dust.

First, let me say that the trip to Madison, WI was delightful. Erin and Phil, my hosts, made a most comfortable landing space for me, including a tempurpedic mattress in the guest room, lovely dogs, great food, and fabulous company.  Erin took me on a little tour to see the house we lived in when I was born and to see Willow Island downtown. Phil drove me to my appointment with Robin DiPasquale, ND of Madison, WI, and she is AWESOME!!  I loved her instantly. She has a private practice and also works through the University of Wisconsin. During my appointment with her, I felt seen and heard without judgment. I realized afterwards that I wear my virtual armor whenever I talk about this disease, whether I'm talking to a doctor, friend or other. I think this is one of the worst things to deal with for people with TBDs and other invisible illnesses. It takes an energetic toll.

When I am exhausted and in pain, my emotional state is squishy at best. My normal, grounded, rational self is either hiding or asleep and the tiniest things can set off Penelope (my inner drama llama - that's another story, but you get the idea.) I'm more easily distressed, sensitive and prone to worry. Fragile. 

Add to that, three strange and annoying things people seem compelled to do that require an extra layer of tough to handle.

       1.  Unsolicited advice, especially about my spiritual process or ways of thinking
       2.  Unsolicited help, and I'm referring to the somewhat forceful kind from the people who think their brand of healing is just what I need and hound me for a chance to prove themselves or sell me something
       3.  Judgment and criticism, about my choices, my spiritual condition, my partner's support, my treatments, and the saddest of all, my overall character and quality of my marriage (a recent example: I'm exaggerating my symptoms so I can take advantage of my partner, and he's being codependent by letting me do so.)

This is exhausting in a whole new dimension and one I wouldn't wish on anyone. I must have wonderful boundaries and the energy to enforce them to keep myself whole. When I can't do that, when I simply don't have the energy, my back up plan is to isolate or limit my contact to people that understand my condition and my definition of support. 

And now, for my last whine of this post I'll write about my growing medication frustrations. I returned from Madison, WI with a new regime of supplements, liver cleansing and toning herbs, homeopathic medicines and gemmotherapy extracts. I started all of these and found my symptoms exacerbated. My belief is that Robin's protocol made my digestion much more efficient (that was her primary focus for our first session - restoring my guts and getting me off Zantac and eventually Dexilant) thereby making the antibiotics and antiparasitcs more effective, thereby creating a herxheimer's or die-off of the bacteria; a good thing.  

I had an appointment with my infectious disease doctor in Maryland shortly afterwards and he changed all of my prescriptions which was quite frustrating since Robin's protocol considered my current drug regime and these were very different drugs.

I started the new prescriptions. Two things went horribly wrong! My doctor thought that since I had been on Dexilant and Zantac for awhile (to stop my nausea and acid reflux) that I might be able to handle Zithromax. That's the stuff that landed me in the ER last August. He was wrong. I was horrifically sick to my stomach in no time. Now the second thing that went wrong was grossly compounded by the first and made my life a living hell for two days.  One of the drugs he prescribed had negative interactions with four (yes, I said FOUR!) of the symptom management drugs I take. I found this out on line after I took the first dose and was deathly ill, knowing something wasn't right. Rifampin, one of the new drugs, wiped out the effects of all of my symptom management drugs and added stabbing intestinal pains, light sensitivity and headaches - on top of all the other symptoms I was suffering from in that moment. This was bad, very bad. I cried a lot and laid around in the dark moaning for two days. Not pretty.

I stopped taking his drugs and stayed on Robin's protocol. I have felt surprisingly bad but I realized yesterday I had added in teasel, so I stopped that and am feeling better.  Tomorrow, I see my doctor in Maryland again, and in an attempt to learn from my mistakes, I'll wait until after this appointment to make a follow up appointment with Robin. That seems like the way to go. I want her to have all the current information.

OK, I think I'm done whining for now. I hope things go well today. I'm feeling frustrated, overwhelmed and a bit anxious. I'm considering looking for another doctor closer to home that follows the ILADS guidelines. I have a lead on a woman in Lexington and might look into that. I just don't know what to do and sadly, no one else really knows either. We're all guessing.