Charity drive - day 11

Today was a good day. I went out with a friend and her husband for coffee and LOTS of chatting :) They had some awesome ideas for me regarding my fund raiser which I may try to explain later when I'm more focused. Brain is kinda 'pffft' today.
Despite constant shaking and feeling very unsteady on my feet, I managed to look presentable and stay in the conversation for the most part (I did get pretty loopy toward the end of our outing). No hats today, just too wiped out from the activity.

Changes

I continue to be amazed at how this disease randomly changes in the way it affects me. While my speech is clearer now most of the time and I don't have as many twitching episodes, I now have more joint stiffness and pain, and random jerking movements; mostly in my limbs. My left wrist is very sore all the time, as though it's mildly sprained and I cannot put weight on it without intense pain. My left knee aches constantly and walking is difficult. Also my muscles have weakened significantly in the last few months. My legs and arms will buckle when trying to move around or support myself. I've also had recurring pain that is unlike any other. It is not a sharp pain, but a dull nagging ache...it feels like my bones are screaming at me. The pain is more aggravating than anything else and leaves me wanting to grinding my teeth in frustration Many have asked if I've told my doctor all this. Frankly, I don't see the point. It is all caused by the disease, so when I treat that, it will all go away. I'd rather not waste my precious little energy trying to treat symptoms when I could be raising fund to treat the underlying disease. For now I will take ibuprofen to dull the pain so I can focus on my goal.

*#%@&%(!!!!!!

My frustration levels are rising today. After months of attempting to contact the owner of a message board I belong to to get permission to publish a post about my condition and ask for donations to be sent to the clinic on my behalf, I finally got in touch with him and got the green light. I posted it yesterday, but within a few hours it was removed by the moderators. It seems he forgot to tell them he ok'd it. I have messaged him and am awaiting response. After feeling the relief of finally getting it posted after months of work, it felt like a kick in the gut to have it deleted. I can feel myself slipping into a depression over this, as it seems to be a recurring theme. I make a little progress, only to get kicked back to where I started. *taking deep breaths* I have been getting sicker again, with weakness and pain increasing, so my feelings of frantic desperation are taking hold. I don't know how much longer I can continue this way.

A weird day

It's been a weird day. Numbness in lower left side of my face (around ear and jaw), stomach upset and pain, bad heart burn - which is very very rare for me - and a sharp pain in the center of my chest (which has since gone away) that increased when I exhaled. My heart rate has been slower than usual, hovering in the 75ish range most of the day, only a few spikes above 100. Still very weak and shaky. I feel best right after I eat. An hour or more after, I feel like I will pass out from lack of food, as if my blood sugar has suddenly dropped, even tho I know that's not possible. Also, in the last two days I have begun to suddenly shake and sweat when lying down, feeling like my heart is beating very hard...like a tiny hammer in my neck. It usually subsides within an hour.

trembling

I have been feeling more run down than usual the last few days. About an hour ago, as I was standing in the kitchen my arms and legs became suddenly weak and began to tremble. Since then I have been having great difficulty walking and completing simple tasks such as typing, eating and drinking. Heart rate is within normal and I'm breathing well so I doubt I will go to ER this time unless it worsens. I also noticed that my urine is cloudy again. I will mention this to my doctor tomorrow.