Vanity and hair

 

This is an interesting topic that I never thought I'd spend so much time thinking about. 

I would never describe myself as a vain person. I don't wear makeup, I don't care about fashion or clothes, I cut my own hair and never spend much time doing it... Until suddenly I started to lose my hair....

It's a common symptom of Lupus, nothing unusual but when it started coming out in clumps I started to think more about lupus treatments. Isn't it funny that when my lab tests were showing that my kidneys weren't doing what they were supposed to I wasn't nearly as motivated to get treatments. And eventually I even stopped treatment because it was making me so nauseous.

The treatment did stop the clumps of hair coming out in the shower and just in my hand if I ran my hand through my hair at any given time. Because it did help it, I forgot about it. I had a lot of hair so it still looked fine with the amount I'd lost. Then I stopped the medication and the clumps came back. And they kept coming and coming until I noticed bald spots and my hair became noticably thinner and you could see my scalp more and more. 

And I started to think more seriously about going back on the treatment. I found that particularly interesting being someone who had never placed much stock in her appearance, that a "vanity" became motivation. I had conversations with myself about " throwing up vs being bald" over and over again. 

I didn't start on the medication again for that reason. My Lupus labs started to become and issue and I needed treatment, but it was definitely a plus! 

So was I not vain because I had good hair and never had to think about it? Or was I just so fed up with everything these diseases have taken from me that my hair was the last straw?

I don't know the answer, but I do know I have more vanity than I thought and maybe vanity come more into play when we want something we don't have? Just an interesting observation... 

Expect the worst then you won't be disappointed

Hope is a funny thing. People tell you all the time "don't lose hope", "you've got to have hope", but I feel like those people don't understand what it's like to have your hopes continuously dashed and destroyed. After 10 years of illnesses, surgeries, tests and medications, and multiple setbacks it's difficult for me to harbor any hope. It's not that I don't have it, it's that I don't want to have it. I actively try to keep myself from hoping anytime a new treatment or promise comes to light. I've been disappointed too many times, so now things that give me hope just piss me off. That's sort of how I feel right now. I know what the test results say. I can read them and I can theorize what they mean. I can research in medical journals, I can use the knowledge I have and come to some sort of understanding of what is happening or could be happening, as well as how to help it. But over the years I've learned that this knowledge and expectation, when I can read something and know scientifically what is happening and why and what should help it but then it doesn't, is just more damaging. 

So after one conversation already with an endocrinologist, one with nephrology and 8 more vials of blood, I still have to wait a week to discuss the diagnosis and treatment plan. 

I will have another conversation with a doctor whom I've never met in person and we will talk on the phone about these latest lab tests that came back wrong. I know what these lab results mean in terms of the physiology and pathology, and I know what the treatments are for these issues, but what I don't know is how this particular doctor is going to react and feel. Is she a doctor who errs on the side of caution and will give me the full blown treatments? Or is this yet another doctor who will tell me that everything is okay even though you can't function or get out of bed. So, yet again I feel like my life is in the hands of this one person whom I've never met, who doesn't know me at all, and will decide whether or not, and how to help me. You can see now why I don't want to get my hopes up. I'm fully expecting the doctor to say don't worry and send me back to my life feeling awful and unable to function the way I want to function with a bandaid treatment that doesn't cover the wound.

That old phrase "hope for the best but expect the worst" has for me now become "expect the worst and be pleasantly surprised if it doesn't happen". 

Yeah that's my melodramatic mindset right now, but it's the truth.

Strictly just a medical update

True to my body's hatred of me a new issue has come to light. Went to rheumatologist yesterday and my lupus markers continue to be a problem so my rheumatologist is making me go back on the lupus medication I used to take- hydroxychloroquine. I no longer have the choice of holding off without doing actual damage. She ordered it right then to be delivered to my house - almost like she doesn't trust me.. lol.

Blegh. That's the med that makes me puke almost daily. 

But she is "very concerned" about my sodium levels. My blood sodium has been low for some time even with sodium supplements 4x a day, pickle juice daily (I buy it by the gallon off amazon now) and Gatorade and hydration drinks daily, plus a prescribed medication that's supposed to actually increase blood sodium.... My other drs have been kind of like "I don't know why it's doing that" and that was it, which yes was super annoying and I had already planned on talking to my primary care dr about it, but this rheumatologist noticed it and is worried, ordered more tests and is sending me to endocrinology for evaluation, my appt is thurs. The tests she ordered came back really high so it confirms her concern. The endocrinologist ordered more for me to have done before my appt. 

So we'll see what endocrinology has to say... More on this later!