As I begin to write this blog I am thinking about how stinkin' tired I am and about my new symptom that started earlier this afternoon. I am experiencing vertigo/nausea the same way I feel when I get sick on a boat...and absolutely nothing will make it feel better :( Everything feels like it is moving and my body can't handle it. I've tried every remedy I can think of an nothing is helping. I am able to sleep in only 20-30 minute increments which is just miserable. I have taken everything I can for nausea, hung two bags for IV hydration, drank tons of water, stayed on top of all my medications, tried cool towels/ice packs on my head, neck, chest and belly...but this symptom is stronger and more fierce than all the tools I have. Justin and I have been talking on and off all night about going to the ER.
For most people feeling this way, it would probably be an easy answer to just hop in the car and go to the emergency department, but for a patient with Lyme it can be a bigger hassle then just living with the symptom itself. Lyme patients often end of defending themselves and their treatment protocols because it is extremely rare to find a practitioner on the west coast who knows how to test for Lyme disease and even fewer know how to help treat that random symptoms that come an go (like tonight).
In the ER, the doctors are not concerned with really getting to the core of your problems, but rather symptom managing...and I'm fine with that, that is their job. Treat patient, order tests, send patient home, treat next patient etc. They run tests, order x-rays or sonograms, hydrate the patient through IV fluids, and in most cases send you on your way. They might give a Lymie something to take away all their pain or check their ears to see if it is an inner-ear issue. But it really depends on who is taking care of you in the ER. It's kinda like poker, sometimes I'll get a good hand and be treated great and other times I get an awful hand - leaving me feeling more discouraged and frustrated than when I walked in the front doors. For me, going to the ER is a huge risk because some medical professionals refuse to acknowledge it as a true disease and will even make comments like, "Lyme is only on the East Coast"; "You don't have Lyme, you just want meds". Lately, I have learned many Lymies are seen as pill seekers....which is so not true in my case. I have way more pills and IVs to last me forever. It is frustrating to have my character judged based on other people's stupidity. I have always been a rule follower since the day I was born and the thought of being unethical and bouncing around from clinic to clinic to try and get medications is so stupid. All I want is to be heard and to discuss possible options that might make me feel better. Come on just check my blood, listen to my heart, do an CT scan and see if you can determine what is causing me to be so uncomfortable.
Can't they just look at me and tell I feel awful?...Maybe...sometimes, but because Lyme is an invisible illness it makes it harder for a practitioner to determine how bad someone feels. The saddest thing for Lyme patients who are treated by practitioners who don't understand the complexities of Lyme disease, the patient doesn't get the help they need or deserve.
I called my mom tonight (at 2:30am...sorry Tom & Mom) trying to track down the emergency on-call number for my specialist to see if I am having a dangerous drug reaction or something else that needs immediate attention. I haven't heard back from the doctor yet, but my mom did remind me it's a full moon.
Oh, of course it's a full moon! That's when everything bizarre goes down. With Lyme, the bacteria live on a 28? day cycle with the full moon and have orgy parties during the full moon so there are lots of new parasite eggs to grow the population (blek!).
I used to be able to guess the day before a full moon because I would have a super weird dreams and I was 100% spot on each month. (Okay, except this month but I can't even get to sleep tonight for longer than 20 minutes!) One cool thing, is I can tell my parasite treatment is working because I do not have nearly as many vivid dreams as I used to around this time of the month. I still have dreams, when the rest of the month I don't remember any...but they are much less detailed and not as frightening.
My last thoughts for the night..."It must be a full moon" is a common thing to hear from people who work in hospitals, psychiatric units and emergency rooms. So something happens between our bodies and the full moon, but I don't know all the answers, I only know there is a connection. I wish I could not be so dizzy/motion sick so I could go to sleep. I can't even close my eyes without it making me very uncomfortable! So who knows, do I dare step into the ER on this full moon night? Is there anything that that can do there that I can't do from my own house? Do they have any medications that would help my symptoms? I don't know. The juries still out on what to do tonight. I'm so glad I have Justin here tonight to take care of me every step of the way. The thing we both decided and agreed on is the ER is open 24/7 so if we go now or a few more hours it's not really going to make a difference. Best thing for me to do is try and sleep and let my body resolve what is going on inside.