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!!!

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 http://www.facebook.com/profile.php?id=1396671112

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!

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.

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!!

Update

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!

Update On The Pool Therapy and Smoking

The pool therapy really wasn't going all that well so I stopped going. I also had a problem trying to get on the schedule because I required more one on one time. I'd try to schedule at the end of my visit and be told that I'd get a phone call for scheduling because the therapist wanted to make sure she had time. I'd never receive a call and have to call back. I'd been forgotten about. I went in for the second visit, then the third (which was with a substitute therapist). I didn't schedule the fourth visit because the therapist was on vacation so I was told that I'd get a phone call. I never got a call and this time I didn't call in to remind them that I needed an appointment.

A few weeks after the last visit I had, I received a call from the therapist wondering why I hadn't been in. I explained that no one ever called to schedule. I even explained that I'd actually finally gotten a call from someone who was inquiring as to why I hadn't returned. I told her I explained that I was awaiting a phone call for scheduling but no one ever called. This person told me that someone would be calling me that day with an appointment. I told her that was alright because scheduling was just too difficult and since I had the pool at home, I'd just make sure to keep up on my own. The therapist then apologized for the lack of communication and scheduling, then she asked if I wanted to schedule an appointment then. I told her no, I'd continue working on my own.

Well, we've moved and there's no place to set-up a pool. The front yard is huge but there's spots for trees which makes it very difficult to actually find the right location for the pool. There's no back yard. That would work out great but it's just not an option. So, I haven't been participating in any pool activity since the last weekend in July. We moved that weekend.

As far as the smoking goes, I tried really hard to quit but it just didn't happen. I even used the patches but they didn't help either. Overall, I have cut back but I haven't stopped.

Life Happens

On the 19th, my dear friend Cindy invited me (as a gift of friendship) to a Janet Jackson concert. I went with her, on the 20th, and we had a blast. I'll post pictures when I get a chance. I was completed surprised and excited although I knew it would take a lot out of me, I can't just put my life on hold because I have all these symptoms that try to take over my body and life.

I had so much pain, and the glaring lights were blinding as lights always are for me, it was unbelievable but how many more times will I have a chance to see Janet Jackson in concert. Being there with a close friend was more than I could ask for. It was exciting, thrilling and all the other wonderful words in the dictionary. The performance was AWESOME and the outfits were absolutely adorable, each and every one of them. The choreography was totally amazing and made me think of my daughter often throughout the performance. Keonna loves to dance and choreograph dance moves. She actually teaches young children to dance as well. It was so very well put together and I'm so very thankful to have a friend think of me in this way.

It takes a lot for a friend to manage being able to take for an outing. It takes a true friend to even think of going through all the trouble with the wheelchair. You have assemble and dis-assemble it because it's electric, you also have to connect the batteries. Being electric means the chair is heavier than a manual one also. I appreciate that my friend didn't let the thought of all this trouble prevent her from thinking of taking me to this concert with her. She figured I'd really enjoy and felt that I also could use the outing. I was deeply touched. She even bought my favorite drink from Starbucks with her, to start the adventure out right.

It's been a week and I'm still in the recovery process but I also had my regular weekly outing on Tuesday. It's been rough because I never really recovered from the first outing before I took the second outing. This is the part that depresses me about just doing something as normal as going to a concert or going out to dinner with my husband. I just don't bounce back right away. It takes a few days to get the pain under control. The numbness becomes more pronounced because when I'm sitting (even now typing this blog), I experience a lot of tingling up and down my spine. When I go to lay down, the nighttime pain, tremors and sensations are become totally unmanageable and unbearable.

If you live a completely active free life without even the slightest reaching, twisting or activity, you might have a chance at having the symptoms to a lesser degree. The bottom line is that there really is no way of knowing. I rarely ever get out of the house and I spend a great deal of my time trying to keep my symptoms at bay because I just can't stand all the symptoms that happen throughout the day. Doing nothing is no guarantee that the symptoms won't flare-up to a degree where they are unmanageable. As I mentioned, I spend most of my time doing nothing but I still have excruciatingly bad flare-ups where I want to go to the ER but experience has taught me that all the ER does is provide a temporary time of relief. Once the effect of the injection wears off, you're still stuck with the same symptoms that led you there for a week, a few weeks, a month, or several months. You never know what you're going to get.

That said, when the rare occasion comes up that I'm able to have an enjoyable outing with family and/or friends, why turn it down. Enjoying an outing means you'll pay for it later but you'll pay for it later whether you're out enjoying life or sitting (or laying in the bed) at home. I'm only 45 years old and I refuse to live like a person on their deathbed, even if it feels like that most days. I'm not on my deathbed and I am here among the living and can enjoy a good time, just like everyone else.

I can be in pain and experience life with all these horrible symptoms from anywhere. No matter where I am or what I'm doing, these symptoms are a part of my life. I may as well enjoy some parts of life along the way. I can lay in bed and be in pain or spend time laughing with a friend while still being in pain. Distraction helps just like using a TENS unit or an icepack.

I'll be sure to post photos from the concert when I feel better up to all the functioning it will take.

I hope everyone is having a TERRIFIC weekend!!