I miss being naive about pain. I miss not knowing daily pain. I miss thinking the pains from my endometriosis, especially on my period, was the worst it would be. I don’t remember ever having a truly functional body, though I do remember less pain, but this daily pain in my joints and muscles, the migraines that are being controlled by two meds so that I’m not having the migraines daily, it’s hard.

I am only 33, I shouldn’t be having this much difficulty with moving, or talking, or thinking, or staying awake. I shouldn’t feel like I have anchors weighing down my limbs as I try to move.

I’m just tired.

From the March For Science

Marching with Me Info

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I don’t remember if I posted about this or not, and I don’t feel like going back through and seeing… so I’m just going to post this here…..


Here’s me in my chair over the last 6 months or so….

I miss blogging, but my health and situations have been untenable toward it.

There’s a lot going on….

The big one is I have a disability hearing date.

I hope to be back more often after that, so it’ll probably be February. I will try to post sometimes in between now and then though.

How are you doing? Please leave a comment and let me know. Not only do I miss blogging, but I miss my bloggy friends!


I don’t know where to start to update, so I”m going to start with the latest that’s going on.


Still grieving Lily (as I’m sure I always will), but I’m feeling alive again.


I had another echocardiogram a couple months ago to check on my murmur. When I went to get my records for social security the hospital included the cardiology report. Someone I know, who is a nurse, read it and explained it…. NOT OFFICIALLY! The understanding of it is that I have two small murmurs, and I have some enlargement of my heart. Now, whether this is lupus or not, and what level of concern this is, I’ll find out on Sept. 11. 

I’m still on prednisone because I ccan’t go below 5mg without neurological symptoms starting up. I’m pushing for a neuro work up when I see my rheumy.

I’m having a ton of foot pain…. the doctor I saw at the walk-in clinic thinks it is from my lupus, attacking the stationary joints in my foot. Xrays have been taken and I’ll find out more on the 11th. 


Lupus just seems to be out to get me, even when I’m on 3 meds strictly for putting it into remission 😦


The kids are great. Gamer started HS this year, and Duckling is in her last year of elementary school.

I don’t know why, but my IC is flaring again. Urgency, pain, incontinence … it’s all there. 

There haven’t been any big changes to my diet, other than changing the type of milk I drink, so I just don’t know what to think! 

I’m using AZO and my heating pad to help combat all the pain, and the other issues. 

I should use some baking soda water as well. 

I’m thankful that most of the time my IC is just an inconvience at most, but I hate the times when it really makes its presence known!

So, it has been longer than I’d like to think about since I last blogged. There’s been a lot. Another disability denial, getting my medical care underway, working (VERY) parttime, doing crafty things and finishing projects.


There have also been skin biopsies. 

I have A LOT of moles. So many that there is actually a name for a person whose skin is in the condition mine is in.

And so far, the three we have results for have all been precancerous. One was bigger than the resident who did that specific biopsy thought, so it had to be redone. 
The latest one to be done (on my hip/thigh area, near my buttock) is looking like the scariest one yet. This is biopsy set 2, and mole #4 to be biopsied. My doctor was very concerned when he saw it. I don’t know if it will turn out to be cancerous or just a higher level of precancer, but either way, it’s worrying. 

So that’s the latest in my journey through life.


Oh, and it’s melanoma that all of this is pointing to, so the most serious of the skin cancers.