Saturday, October 25, 2008

Here we go again. Why?????

Unfortunately, I'm now back to icing my back many times throughout the day. Today, I actually feel like going to the ER to get an injection so I can have some peace of mind. A time without pain. I really don't know how much more of this I can take. My back is killing me and so are the abnormal spinal sensations. I'm trying my best to remain positive. I'm trying to do other things to keep myself distracted.

ASAP is very light today so not much of a distraction. I went to chat today and that was great until I had to give some time to my granddaughter. She loves her Nana attention I give. I love being able to provide this quality time to her. It provided some distraction while I was also on the icepack.

I've been trying not to spend so much time in the bed since we've moved. It started with my mother-in-law visiting. I didn't want her to get hurt trying to look after me so it helped to keep the positive flow going by not letting her help me. Once she left, I stayed in the mode of getting up, visiting ASAP and staying away from the bed so much. It really helps to keep the depression down too. I've noticed that when I'm up more, I'm not depressed so much.

Being up, I think, is not so good for my back. It's good for my mood so I guess that's a plus. It's all connected. Relieving one thing (depression), helps out with the rest in the long run, I guess. I do know this, I just think sitting contributes to my increased pain level. I do make sure I take frequent breaks and naps. Actually, my body never lets me forget. I get so exhausted and feel so tired (can't hold my eyes open and sometimes they burn) that I have no choice. Still, the pain won't stop or even let up for a while.

It's like a catch 22. Have more pain or be depressed??? I don't want either. Depression is horrible and it's really hard to get out of that mode, once you're there. It's a miserable feeling and so is the pain. It's a lose/lose situation.

With all that's going on and the intensity of pain I'm dealing with, I must thank GOD that I'm able to still think rationally and not hide myself in bed, away from the world. I thank GOD for the time I'm able to spend in the ASAP forum. I thank GOD for my family and all the people at ASAP who understand what I'm going through. I thank GOD that I'm up and about, living life, instead of hiding in the bed feeling sorry for myself and useless.

I will continue to use as many ice packs as it takes to give me even a moment of relief. I will continue to manage the best way I can, with a smile on my face. When the pain becomes too much, I will continue to sleep through the worst as I've always done.

I hope everyone is having a pleasant weekend!!!

Monday, October 20, 2008

Facebook Account Includes ASAP Cause

I have a facebook account and I've recently joined the ASAP cause. I would encourage others who are struggling with SM/CM to join. You can invite your friends/family who are facebook members to join and then they can make a donation to ASAP. It's a great way to spread the word about CM/SM and raise money for research.

You can access my facebook account at

If you don't have an account, you can create one. Once you get your account set-up and connect with any friends/family currently on facebook, you can join the cause. If you'd rather not join the cause but still want to make a donation, you can make a donation through my account.

I hope everyone is having a great day!

Tuesday, October 14, 2008

Update - No changes

There's really nothing new to tell other than I'm getting use to "all" the new/old symptoms/changes. Unfortunately that's just all there is to it. It won't go away so I just have to learn to deal with it, so I am.

Today, I started feeling the numbness in my thigh, up to my private area. I can't really say why exactly, but for some reason I just broke down in tears. Maybe it was the thought of knowing that area was going numb, I wish I knew. Regardless, it's not like it matters because I'm celibate these days.

Anyway, I've adjusted and I just need to start handling these situations better. I think I did rather well this time, no depression that is. However, I'd rather know that I'm just use to it and not make a big deal out of them anymore. Well, I'd still document it here but only for reference and hopefully without stating that I need to adjust to it.

I hope everyone is doing well.

Friday, October 10, 2008

Another Progression - Different But Too Soon

It seems I just got use to an increase in the pain and tremors. Here we go again now with every other symptom becoming much stronger than ever before.

The right sided numbness and tingling is driving me bananas. The tremors in my hand are now starting to dramatically effect my typing speed and errors. My left foot is numb now. I'm having an even harder time with sleep because the intensity of the tremors, pain, chronic itching and abnormal spinal sensations make me sick. It all feels so bizarre that I get nauseous and sick to my stomach. I can't stand it all so if I don't fall asleep right away, I have to sit up, or prop against several pillows, until I do fall asleep. It's maddening and enough to make me want to pull my hair out. I hate it all and I'm extremely tired of it all. I don't know how much longer I can manage.

I can't even talk right half the time. Some days are worse than others, but along with the hoarseness, I'm stuttering more. This really bothers me a lot and frustrates me to no end. Once I'm frustrated, it becomes a vicious cycle because I get stressed and then I stutter more. I know this, yet I can't stop getting frustrated over it. It's like the word is right there but it just won't come out, or the wrong word comes out sometimes. I can handle the wrong word coming out, it's when the word is right there but I can't get it to come out of my mouth that's causing the problem.

The tremors are happening more frequent when I'm sitting. It's invading all my safe places. It's not just tremors, they hurt and cause my muscles to spasm and increases the pain in my back. If it was just as simple as having tremors, I could probably deal with it a little better. I feel like I've run a marathon after one episode and I actually have to lie down afterward. This action causes the tremors to start up again. Then it will happen a few more times before they will actually calm down for a little while and allow me to rest or nap. It's exhausting.

Sometimes, I wish others could feel what it feels like to have to live each day like this. I don't make a big deal out of it because it won't change anything. Mostly, I stay positive and smile, even when I'm at my worse. If I'm hurting too bad (or the other symptoms become too much) and can't remain positive, I go to bed and sleep through the pain, or other symptoms.

Yesterday, the pain management doctor said it was OK for me to up the Lyrica another 75mg (total 450mg) by taking two in morning. However, I can only do this when the pain is unbearable. I asked him because I had some rough days and had already increased the Lyrica, on the worse days. It's not everyday. At least, I pray it's not everyday that every symptom bothers me and becomes intolerable. For the most part, it's all here to stay and I know this, so I try to deal with it the best way I can. However, there does seem to be days where it bothers me more than other days. Maybe it's during that time of the month. I still have PMS, even though I no longer have a cycle, because I still have my ovaries.

I hope everyone has a "FUN" weekend!!

Tuesday, October 7, 2008


My days have been average. I fight pain in the morning, try to visit ASAP in the late morning or afternoon, nap, visit ASAP again then I wait for sleep.

I'm really exhausted and so very tired of dealing with pain. I hate it and there's nothing I can do about it.

My oldest son came home October 4th and my grandson is here for a week visiting him, and his other grandma and aunties. He is such a little darling boy. He's very helpful, very respectful, well mannered and polite, and so very adorable. I've missed him terribly since his last visit. I really need to take him out to Chuck-E-Cheese and Toys'R'Us. I'm hoping I feel well enough to take him and my granddaughter on Saturday, before Jaeden returns back to Las Vegas on Sunday.

It was so exciting seeing my son again and really wonderful to see the joy and excitement in his son's eyes when he ran to him yelling "Daddy......". Once my docking station for my camera is hooked back up to my computer, I'll post the photos of their reunion. It was such an overwhelming time. I haven't been able to get a good rest since then. Today is actually the first day I was back on schedule with my rest periods and naps.

Hopefully, today is the beginning of me getting back on schedule and hopefully being able to get the pain back under control. I really don't want to be in bed lying down while my grandson is here. I want to enjoy spending time with him while he's here. Tomorrow morning he's off to visit his other relatives so that's the perfect time for me to work on managing the pain. By doing this, I know I'll be prepared to spend quality time with both my grandkids on Saturday.

I hope everyone is having a good day!