Uncomfortably numb

I'm not always aware of when I'm in physical pain, or how much pain I'm in. I have had daily pain for many years, and I have learned to dissociate from it so that I'm not forced to deal with it on a constant basis. That's helpful in some ways, but the flip side is that it can be difficult for me to be present with the pain when I need to, for example in order to quantify my pain level for a doctor. I can also find myself unexpectedly tired, or sad, or just vacant, and not realize why until later. Today I found myself with tears running down my cheeks as I sat waiting for a CT scan; at the time, I thought it was just because I was so tired, but later I realized that I hadn't been able to get comfortable in my chair, and I had been rubbing my fingers, elbows, shoulders, and neck because the joints hurt so much.

Based on the number of times this kind of thing has happened in the past few weeks, I think my pain level has been pretty bad. I know I mentioned spinal pain to my doctor when I saw her on 2/17; it has to be bad enough that I can't tune it out in order for me to mention it to a doctor anymore. I know I have been taking more hot baths to help me sleep, and spending more time with the heating pad on my back.

It's not the first time I have had this revelation, but I think it might be the first time since I started keeping this blog. No need to reinvent the wheel next time, now.

finally

After two shipping errors and multiple phone calls, I finally started the hormone test this morning. It took 3 calls to the testing lab and 3 calls to FedEx to get an actual test kit delivered to my house. The first kit was sent regular mail instead of overnight, even though the lab told my doctor they would overnight it directly to me. That kit has still not arrived. When I hadn't received it after two days, I called the lab, found the shipping error, and paid for a second kit to be overnighted to me. The company managed to ship that one off correctly, but FedEx failed to deliver it the next day. I called FedEx and explained to the customer service rep that the package contained a medical test, and that if I didn't have it by this morning I would have to wait a whole month before I could do the test. Her response was "Too bad, it will get there by 3PM." She also wouldn't assist me in getting a refund for the charge I had paid for the overnight shipping -- I had to call the lab back for that. A friend suggested that I call back FedEx and ask to speak to a supervisor, so I did that, with the polite but firm approach that I would keep going up the chain until I found someone who knew how to get the package to me first thing this morning. The supervisor I spoke to said she'd put in a request for expedited AM delivery, but apparently no one read it, because when I called again this morning the notes were in the computer but the package had been sent out for 3PM delivery. I spoke to a second supervisor, who actually called the driver and had it added to the AM delivery, and I got it at 10:15.

I'm telling myself that the timing was actually not too bad, since I usually wake up between 9:30 and 11:30, and I was able to do today's test at 10:30. I didn't know to take my temperature before getting out of bed, though, because the test instructions were not available online. I'm hoping that it won't matter for the first day. The instructions for collecting the saliva also weren't completely clear, so I'm going to call my aunt and ask her how she has done it in the past.

I am having a lot of anger and anxiety about this test. I can't believe that it took me 4 doctors and 6 months to find someone willing to order it for me -- even though all 4 doctors readily agreed that a hormone imbalance could be causing my mood swings. I can't believe that I had to go through several months of mood swings while I searched for someone who would order the test. I can't believe all the bullshit I had to go through just to get the test to my house. I also still don't know if the test will be covered by Medicare (although the diagnosis code was included in the test kit, so I can now find out). Fortunately, the doctor who ordered the test for me -- my new GP -- seems interested and willing to help, so hopefully it won't be this difficult every time. It has been extremely hard on me, and used a lot of energy that I didn't have to spare. Other things have not gotten done this week because of it. And now, I can't settle, even though I am exhausted from stress and insufficient sleep.

My GP did give me a talking-to yesterday about not waiting so long to take Xanax when I have the mid-cycle mood swings. I told her it sometimes took me a long time to figure out what was going on, and she said that if I was crying uncontrollably for no apparent reason and it went on longer than an hour, I should take Xanax, period. No need to figure out what was going on first. Sensible suggestion. I hope it makes equal sense when my brain is addled by hormones.

Erosion

I came to a realization today that I’m kind of struggling with. Here it is: I can no longer clean the whole bathroom in one go.

Before I got sick, I used to clean my whole house at once. Then, I cleaned half at a time, then a room at a time. Now, it seems that I can’t clean a whole room. Cleaning out the bathtub and sink left me shaking and in pain. The floor, shower, and toilet are untouched.

I will readjust -- have already written myself a big note on my white board in red dry-erase marker to help me remember -- but for now I am feeling some grief.

nighttime revelations

I just gave up my evening T'ai Chi routine in favor of a bath for the second time this week, then spot-cleaned the bathtub with tissues because I was hurting and desperate for a hot bath and couldn't face the additional pain of going over the whole thing with spray cleaner. This, of course, means that I may actually be dirtier when I get out than when I got in. There are aspects to this illness that I never could have imagined. When I was well, there were certain chores I just always did no matter what, and keeping the tub clean was one of them.

This brought me to the realization that I have been having more pain lately that I can't ignore or tune out. I have gotten pretty good at tuning it out, so that means my pain level is probably 5-6. Raising the dose of Malarone has also caused a recurrence of some of the high-dose antibiotic side effects I was having earlier -- trouble sleeping, nausea, fatigue, and loss of appetite. Oh, and flank pain -- that's back too. I have been drinking a lot of ginger tea, which helps some with the nausea, but I don't think I have managed to eat a proper lunch this week, just little snacks of handfuls of nuts. That still gives me a decent number of calories, so I will just accept it for now. I think, though, that until the pain improves I need to focus on doing pain-causing chores earlier in the day -- cleaning the tub, unloading the dishwasher (it has been sitting full of clean dishes for 2 days, because when I think of it in the evening I'm always hurting a lot), taking out the garbage. Anything requiring lifting, bending, or extension. Also, not to try to do a bunch of these things in a row to get them out of the way, since that causes flares. I'm hoping I'll remember this. If you read it, feel free to remind me.

On Monday, I went to see a new LLMD. I will call her Dr. L.

I was impressed. My friend Michelle, who went with me, was too. Dr. L actually referred to the information I brought her multiple times (catch me before I hit the floor!), and she really seems to know her shit when it comes to Lyme and its coinfections. Here are the highlights:

• She said I need to be taking more Malarone. She upped my dose from 500 mg BID to 7500 mg BID. She also changed my artemisinin dosing schedule from 100 mg BID, 5 days per week, to 100 mg BID, 3 weeks on and 1 week off.
  

• She confirmed that I will have to repeat the Lyme treatment once we have dealt with the Babesia.

• She listened to my description of the new dental pain and recurring tooth pain. She said she was the first patient she had seen with Lyme-related dental issues, but said she would do some reading and see if she could find something that might help.

• She said that, in her experience, doxycycline doesn't lower Malarone levels. How did she find out? By testing patients until she was convinced. I liked that a lot.

• She also said that it was fine to take CoQ10 with Malarone. She said that even the man who did the original research had recanted. She confirmed it for herself, again by testing patients on Mepron or Malarone with and without CoQ10.

• She agreed that I should get my hormones tested and gave me the name of the lab she uses. She offered to order the tests herself, but she just moved offices and didn't know where her box of stuff from the lab was, so I said I'd have my internist do it. This is encouraging, though, because it means that she has experience interpreting saliva tests, which my internist doesn't. She asked me to bring her a copy of the results. You bet!

At the end, she told me that I was a complicated patient. I acknowledged it, and then asked her politely if, now that it had been said and acknowledged, she could please never say that again. She said okay.

Once again, I am cautiously optimistic. Everything seemed good until the "you're complicated" remark. I get nervous when doctors tell me I'm complicated because it can mean so many different things, from "wow, you have the medical history from hell" (yep) to "you are going to be a huge pain in my ass" (run away!). I did make sure to ask directly if she was willing to take me on, and she said yes. I really, really like it that she tests hypotheses for herself, and follows the evidence rather than the accepted dogma if the two don't agree. I definitely feel like I'm in better hands with her than with Dr. M, so I wrote Dr. M a goodbye letter yesterday.

not my favorite week

I just got back from my appointment with gynecologist #3. She said she had never heard of someone having mid-cycle mood swings for only one day, and wanted to know why I couldn’t just take an SSRI for one day. Even if I could tolerate SSRIs, which I can’t, I don’t think they work on a PRN basis, do they? Then she suggested a sedative, but I stuck up for myself and told her that the Xanax I was already taking wasn’t enough to stop the crying jags, the urge to spend money, or the suicidal thoughts I have on those days. Eventually she said she’d be willing to prescribe bioidentical progesterone cream, although she wasn’t sure it would work. However, she would not, no way, check my hormone levels, even though she wasn't sure how much cream to tell me to use. I asked her why -- sticking up for myself again -- and she said it would be too hard to catch the hormone fluctuation, since it happens in one day. Well, not really, doc -- I just wait till the day I have the crazy and go to the lab with the nice slip you've written out for me… She said she’d check it if the progesterone cream didn’t work. Great, but then you won’t have a BASELINE! She didn’t even look at the 4-page questionnaire she had asked me to fill out and bring to my appointment, so she didn’t see any of the other stuff (like the 7-10 day super-heavy periods). She smiled and said brightly that we could do our follow-up by phone. At that point I gave up and tuned out. No point in being present if she wasn’t.

As you can see, this left me muttering to myself, and typing in italics. Feh. It also wore me out enough that I needed a nap. The thing is...it really seems to me that it might help to get a baseline to learn which hormones might need to be adjusted and how much. I know that if I use progesterone cream and then get tested, it could bias the results. I thought about it all day, and ended up deciding with gritted teeth to hold off on the progesterone cream this month. This leaves me with Xanax to manage the next mood swing, which is less than ideal. I emailed my internist to ask if she'd be willing to check my hormone levels for me before I go looking for gynecologist #4.