Good news and a bad mood

I had my gauntlet of appointments yesterday. The good news (from the Ophthalmologist) is that the Plaquenil didn't damage my eyes. I wasn't on it for very long, so I didn't think that it did. He said that my increased light sensitivity was likely an "uncommon side effect" (add that to the list) from the Plaquenil. He also said that seeing after images (like looking at a bright light, then away and you can still see it) doesn't happen in the eye, but in the brain. Apparently that's called "Palinopsia" and can be caused by some medications.

The bad news is that he found very very early signs of cataracts. It's never good when a doctor looks at something and asks a question right away. (Doctor looks in my eyes) "Have you ever been put on steroids?" SEE!? Not a good sign. 

My PCP (primary care provider) appointment later that day was short. Well, the wait wasn't short, but my time with him was. He was glad that the muscle weakness is doing a bit better. I GAVE HIM MY LIST and hearing him read my symptoms out loud was a bit helpful. But frankly he seemed overwhelmed and told me he was glad I had the neurologist appointment soon. He said he wants me to keep the appointment with the crappy rheumatologist (that I don't like) because I need to check in with one, then he'll get me a new one. Fine. Oh yeah. And I have a bladder infection.

I need to buy myself some "cranky day" flowers

I'm lucky that I didn't have anything that I super "HAD" to do today because I've been tired and cranky all day. I took a nap and just woke up even crankier. I hate it when that happens. I realized something important though. 

I have a major cycle that I go through again and again.

1. Try and help/cure myself with diet/exercise/information
2. Whatever it is gets too bad (pain, etc…) and I seek medical help.
3. Try a drug that helps at first really well, then gives me awful side effects.
4. Stop taking the drug because of side effects.
5. Go back to step 1.

I'm feeling like I'm back at step one, but resisting. Like I've said in the past... I want to trust my doctors and let them help me. I want to work WITH them to do what's best for my body. But most of the time I just don't feel that's happening. I feel I'm the one educating myself and them along the way. When I first saw my rheumatologist I told her "You need to understand the impact this has on my life. If we're talking a 1 to 10 scale I'm at a 7 for it impacting my life." Today I'd say that's an 8 going closer to 9. After all the money and time I've spent trying to get help I had thought that number would be going down... not up. I feel worse two months later than I did sitting in her examination room. 

But... I'm trying to remain hopeful. I'm doing what I can and keeping with my appointments. But today I'm cranky, a bit angry and really tired. And that's ok.

love offering of blackberries from my husband

Things that make me feel better when I'm crabby:

• Staying in my pajamas
• Taking a long shower, then changing into clean pajamas
• Telling my husband that I'm cranky and letting him be supportive/sympathetic
• Explore why I'm feeling that way
• Talk to myself like I would a fussy toddler (give myself lots of empathy)
• Know that I'll feel better at a later time (it won't last forever)
• Take a nap (sometimes it helps, sometimes not. But if I'm asleep I'm not crabby)
• Watch trashy TV
• Drink a lot of water (I laugh when my doctors recommend this. If they only knew how much I down in a day!)
• Wear my husband's deodorant (I know that sounds strange, but the smell makes me think of him and boosts my mood.)