Tuesday, July 22, 2008

No Change

I'm not sure what's going on but today, I'm experiencing numbness on my entire right side. This has been one of the temporary symptoms that come and go. I've had the numbness the entire day, including my face. It feels really strange.

The worse part of this is that there is really nothing the doctors can do. I've provided the information to my doctors, in writing and verbal, and the basic response is to manage it the best way I can. If it starts effecting both sides of the body, I'm heading into the ER, ASAP!!

It's strange because it also effects the private areas of my body. It's not painful, of course, however, it does feel extremely weird.

Between everything going on lately, I'm beat. The pain alone, exhausts the heck out of me. Add everything else in and I'm done for.

The strangest thing happened this morning. I woke up from a quick nap, after Mickey left for work, and I went to the bathroom. I've been using the bedside commode over the last few days but decided to give the short distance walk a try. I'll go when I feel I can but Mickey wasn't home to help me back if I couldn't make. Anyway, I felt like a drunk person. I was swaying from side to side, imagine that with the existing uncontrollable tremors. My head felt like I had been out all night drinking and therefore, had a hangover. I was a little disoriented but mostly I was trying to get control of myself and wondering what the heck was happening. I didn't figure it out but it went away within the half hour so I let it go. If it happens again, I'll definitely let my doctor know.

I take a lot of meds and I know for a fact that I can have a reaction after taking a med for a long time. For this reason, I would want to make sure I'm not experiencing some type of weird reactions from a med. Any more drunken mornings and I'm off to the doctor.

I hope everyone is having a wonderful day!

Sunday, July 20, 2008

Bad Times

I've been under the weather and it really sucks. This morning I slept really late and when I woke up, I had a difficult time just sitting up for the icepack. After my morning ritual, I had so much pain in my legs and back that I just wanted to scream as loud as I could, for as long as I could.

When I could no longer take it, I called Mickey in the bedroom and told him I was having a really bad time. He rubbed ointment on my back and stayed with me for a while. Before he could leave the room, I had to change positions. I couldn't do it on my own. My hands and legs were tingly and numb feeling, so with the pain, it was too much. I had to change positions because it was getting more painful by the second.

Mickey was trying to help but I was having a hard time and not speaking clearly so it was a little chaotic for a bit. Michael was there to see me in tears that I was trying really hard to hold back. I couldn't so I just let it out. I don't like my kids seeing this side of what this illness does to me but I'm not sure why. Maybe because part of being a mom is taking care of your children, being a nurturer and a care giver when they need it. Regardless, it was too late because the pain was excruciating. Once I moved to a better position, the tears were gone and the smile was back. That's just the way I cope with it. Smiling rather than crying. Making the best of a bad situation.

Mickey was great and I was soon on my back and able to get a little relief for a while. I had to change again before the half hour was up. Mickey helped me prop up against my pillows and I stayed in that position for quite some time. I was afraid to move because every other position was so uncomfortable and painful. Besides, I'm sure by then Mickey needed a much deserved break.

Around 6:30PM, I was finally able to see a little light at the end of the tunnel. The tingly, numbing feeling was only in my fingers and the side of my legs. That's a lot better than before. The back pain had gotten to a level of about 6 (out of 10), so I was finally able to sit in the chair.

Trying to read emails and ASAP from a little handheld thingy with Internet connection, is extremely difficult. I'll have worse vision, sooner rather than later. Sometimes I can send responses but most times I can't. I get frustrated because the darn thing moves so slow that I'd rather sit in the chair. At least by typing about 85 words a minute, I can type what I need to rather quickly and be done.

Kira doesn't have computer access at the moment but she has communicated that she's doing much better since the pain pump was implanted and will be starting school at the University real soon. Unfortunately, Keesha and Penny are both really under the weather and in need of your prayers. Thank you for these much needed prayers. Hopefully both will be feeling better soon.

It's actually weird to say we feel better when the reality of the situation is that we're truly not. Not better, I mean. Feeling better means getting the symptoms back to a tolerable level. It means feeling better from an extreme increase in symptoms or other complications that brings us down, or puts us in bed for hours, days or weeks at a time. I pray they are able to get back to a tolerable level. If they can do better than that, it's a much needed blessing that's well deserved.

I hope everyone had a great weekend!! Fun in the sun, or snow, depending on where you are in the world.

Saturday, July 19, 2008

Living Life One Day At A Time

How do you face each day, knowing the next one could be the same or worse?

When you go to bed, you know that you'll wake up with pain and other debilitating symptoms. Will the level of severity be the same, or will there be an increase? What are your options for each day? Will it be a bad day, or a worse day?

Why do all the thoughts for the future, appear negative? They're not. Knowing what you have to look forward to each day is a survival instinct. You pray and hope for the best, always. However, acceptance plays a huge role in moving on; in being able to move forward in life.

Living in denial will allow you to stay in a depressive phase. When you're depressed, you're not living. In order to live your life (with a chronic illness) one day at a time, you must accept the circumstances, situations, adjustments or modifications you're dealing with.

I live life one day at a time by not living in denial. I accept what I'm dealing with so I can make the required adjustments, in order to move forward in life. In order to laugh and not cry. In order to have fun, instead of doing nothing at all, except "be here". I am more than just the air I breathe. Accepting the limitations I have allows me to get up and about, on some days. Perhaps not all days, but I accept the days that I can.

There are days that I am depressed, but I try to recognize the signs in myself early, and not let it be a welcomed visitor.

I hope everyone has a lovely day full of smiles and laughter!

Headaches / Bad Day and Night

Since the day I had my first headache, they have become a frequent visitor. Sitting up in bed (propped against pillows) without moving my head (at all) is pretty much the best position to keep them from becoming too severe.

I spent most of the day in bed with this horrible headache yesterday. It didn't start to subside until late in the afternoon. It was creeping through the surface for a few days before it finally blew up. The pain mostly resided at the top, sides and back of my head. From time to time, I'd feel pain in my neck. I have no idea how some people with this illness deal, with this type or similar, headache on a daily basis. I guess, it is what it is. There's really not much you can do, except deal with it.

I half slept all night again. From the pain in my back, to the strange sensations in my spine, face, legs and arms, I was attacked all through the night. I had to turn the television back on for three separate occasions because it was all too overwhelming. Several times, I started crying but caught myself because I didn't want to wake Mickey up. No one likes being woken up out of sleep, no matter what the circumstances are. It was an extremely difficult time for me.

Regardless, I was up at 4:45AM, bright-eyed and bushy-tailed, taking meds, laying against the icepack drinking a macchiato and watching television. I recognized the beginning signs of depression creeping in so I took two Ativan at an attempt to fight it. Cymbalta helps with nerve pain and has a dual purpose of helping with depression also.

I'm here to smile and laugh another day. Laughter is the best medicine. Most likely I'll be smacked in the face with an instant need to sleep, sooner rather than later. Ativan has that effect on me sometimes. Thankfully, it's not something I take everyday. It's prescribed (in my case) to be used, once in a while.

I pray everyone has a terrific weekend! Keesha and Penny, from ASAP, are both in need of healing prayers. They are having numerous problems, all at once and the situation becomes very overwhelming and exhausting on them, and their families. Please pray for them all.

Thursday, July 17, 2008

Progressing Symptoms / Flare-ups

It seems I have been overlooking the fact that my symptoms are, again, progressing in severity. I'm finding out, more and more, that denial plays a huge part in a progressive disorder.

The length of time it takes for the level 10+ pain in the morning to decrease, anywhere from 5 - 7, is taking much longer these days. I'm sleeping more hours than I'm awake, again. I have a feeling of complete exhaustion, most of the day. Sometimes I can fight the desire to sleep, but most days, I can't. The right-sided facial and leg numbness is back. I'm continuously awakened with sleep starts, all night long. This, in turn, wakes Mickey up and he has to be up at 4:45AM. If it's not sleep starts, all night, it's tremors in my hands, legs, and now, my head. I remember, not so long ago, I didn't have nighttime tremors at all and now they continuously interrupt my sleep.

The increase, or rather progression, of these symptoms has been happening now, for at least three weeks. I guess I have turned a blind eye until I can no longer deny the reality starring me in the face. It sucks, but at least I've already gotten use to the progression. Is denial an absolute bad thing? I'm not sure, but for this particular situation, it has been a blessing in disguise. Since I've just now accepted it and I've already been going about my daily living with the progression, it's too late now to fall into depression. Well, that's my rationale and I'm sticking to it.

I hope everyone is having a wonderful day!

P.S. I heard from Kira (through her blog) and she appears to be doing well after the pain pump surgery. I'm still waiting to hear back from Penny so please, everyone, pray all is well with her and her husband. Thank you all for the prayers and well wishes.

Can I Please Have A Do Over

Why can't I just start over, without SM? When I have days like yesterday, I get really angry about the whole situation of living with SM. It takes a lot to know you have to live everyday in pain, and with debilitating symptoms. Then, out of no where, you get smacked with a day, a month or three months, of an increase in symptoms (flare-ups). During this time, it seems that every symptom you have, even those that come and go on occasion, are present and accounted for.

The entire day was absolutely miserable. Well, I had about an hour or so, after I woke up, where I was still hurting pretty bad after my morning routine (I've had trouble with symptoms for about three weeks now) but I was able to sit up. However, after that first hour, every time I raised my head, I felt dizzy and nauseous. Basically, every symptom, including the pain, appeared to be 100 times more powerful.

Later in the evening, close to bedtime but after dinner, I started feeling well enough to sit in a chair again. I was tired of either sleeping the day away, or being propped against several pillows feeling miserable.

Maybe I should say it louder, "I WANT A DO OVER!!!" I want my life back. The life I had, without SM.

I hope everyone has a lovely day.

Monday, July 14, 2008

Laying Down

I'm getting to the point where I hate to lay down. I've always had strange sensations in my spine, since the beginning. It actually started right after the surgery. These days the sensations are much stronger and it feels like someone is kicking me in the back, from the inside.

Here's an example: I took a nap today. When I woke up I had a constant battle going on in my spine that wouldn't stop until I sat up. It also takes forever to fall asleep because this kicking feeling never ends. Some nights, I try to stay awake, watching television as long as I can. As long as my mind is active, it doesn't happen as much. As soon as I try to sleep, it starts. Sometimes it's there when I sit. There's also been times when it's woken me up out of my sleep, which wakes Mickey up. Did I mention that while I'm generally a sound sleeper, Mickey is a light sleeper. Anyway, it's definitely the most bothersome when I'm relaxing.

I hope everyone is having a great day! Hi Hahn!!

Saturday, July 12, 2008


I'm back and pretty much feeling the same. There has been a few rough days but what else is new.

I had the scope and found out it's considered surgery. The billing system is all messed up. I went back after using the ear drops for three days and the doctor drained my ear out and found out I had an ear infection. He ordered an antibiotic that I took for a week. When I went back a week later the infection had cleared up. I go back on August 5th, for the hearing test. It's different than the one I had a few months ago. I guess it's a more extensive test. We'll see how it goes.

I'm so forgetful these days that I scheduled two appointments on the same day. Thank goodness the pain management doctor was able to change my appointment for me, to the next day. Mickey took the day off so I could make it at 7:15 in the morning. Luckily I live in a close vicinity of all my doctors and the hospital. Anyway, the PM doctor is really good and always makes recommendations for other forms of treatment. We told him our plans for pool therapy at home and then he recommended joining the YMCA for the winter time. The YMCA has an indoor heated pool we can use. I can't use the outside pool in the winter. We may live in California but I wear gloves and a heavy coat in the winter. It's cold in the winter!!!!! Basically all the doctors can do is provide treatment since there is no cure.

I did go in the pool on the fourth. I did my exercises at my own pace and then just relaxed in the pool with the grand kids. I had a great time. As usual, I paid for it later but this time the recovery was a little longer. I'm use to it now so I don't let it bother me.

As I mentioned, Mickey took Wednesday off for my visit so instead of having a Thursday night outing, we had the outing on Wednesday. I had a wonderful day but the next day the pain was very unforgiving.

I hope everyone has a wonderful, fun weekend!!

Friday, July 4, 2008


I went to the ENT doc on (? can't remember the day, wow). I somehow got an ear infection so I had to stop the Debrox drops and replace them with Cipro drops. Cipro drops are an antibiotic that I have to take over the week and then go back to the doctor next week. I have a doctors appointment with pain management next week also so it will be a busy week.

Today, I'm going to get in the pool with the two grand kids, Tanira and Jaeden. I'll do my exercises and then just relax until I'm ready to get out. I got sunburned last time and the dried skin just fell off earlier this week. Hopefully, I don't get burned today. I have to set up a constant schedule for the pool because I have decided that I'm not going to continue therapy. Overall, I had fun but the price to pay was too high for me to continue.

This week, I was looking over all the progression that has occurred over the last two years (since this began). So much has happened that it's a blessing that I didn't get depressed all over again. In the depression department, I've come a long way too. I was crying and boo hooing all the time, at the drop of a hat. I realized that I have to give myself credit for how well I've started handling everything.

It's strange that I noticed myself getting to a point where I was struggling to deal with everything. I decided to mention it to Mickey rather than hold it all in. I was surprised that he started talking about things that we could do to keep me from shutting down (his words). It's hard and at times it becomes too overwhelming. I have to admit that it's too much to deal with on my own and allow other's to help me deal.

I need to focus more on how well I'm managing and less on what I've lost. Besides the pep talk, I took Ativan most of the day (yesterday) because depression was at an all time high by then. A few days of thinking about all I've lost and the one day of "the blues", will bring me way down every time.

It's good to be aware of how much I have progressed in two years. I don't need to dwell on it though. I look the same, I smile and laugh and it's hard for someone who doesn't know me to believe that there's anything wrong. I'm so comfortable with the wheelchair now that even I forget why I have it sometimes, until I stand and the tremors hit me with full force. I was able to see how much the tremors have progressed. Started pretty violent and then settled in one leg and sometimes the other. Now they're in all extremities. I had rest from the tremors when sitting and laying down. Now these feisty devils have invaded my sleep. Not only mine, they're so strong they wake Mickey up too. I feel bad for him because he then has to be up early in the morning for work.

Well, a small view of a much larger picture. That's one symptom that I've shown the progression of. I have many other neurological deficits and each one has progressed in some way. I'll say it again. I really need to give myself credit for being able to deal with everything that occurs, day in and day out, everyday.

Ssshhh! Don't tell anyone that I really don't have to deal with everything all the time. I sleep a LOT!!

Well, I better round up the crew (Mickey and Michael) so they can get me and kids in the pool. I suspect that any minute now the little munchkins will be beating down my door.

I hope everyone has a happy, safe and enjoyable 4th of July!

Wednesday, July 2, 2008

3rd Pool Therapy Visit

I went on Monday and I had a different therapist who allowed me to work at my own pace, by myself. She was there but let me do what I wanted. I took my time and did the normal exercises. When the tremors started, she would come and stand by me until they ended. I had about four episodes while I was in the water for twenty minutes. I waited them out and went on with the exercises.

As always, I'm exhausted. I slept a lot Monday afternoon, yesterday and even this morning my body is still exhausted. The obvious is that my back hurts more and the tremors are more violent. Monday night I woke up and for some reason I thought I was hitting Mickey over and over. I wasn't, my hands were tremorring and it woke me up.

The down-side to pool therapy is that I have night time tremors in all extremities, that are so violent both Mickey and I wake up several times throughout the night. It sucks for Mickey because he loses sleep and then wakes up at 4:45AM to get ready for work. I wake up at the same time each morning, but I can go back to sleep when my body says it's time.

I think Monday was my last visit. Since the pool at home is now ready, I can do the exercises on my own with supervision from Mickey. I can take my time and then relax as much as I need in between time because Mickey puts the chair in the pool as soon as I get in. I actually start out just relaxing in the chair, floating around the pool.

Since I can only go on Monday's because Michael is off then, I can do more than one day a week using the pool at home. This way, I can save my PT visits for the winter when it's too cold outside to get in the pool. I'll speak to the pain management doctor about it and just have him write another script in the winter.

I hope everyone is having a great day! I heard back from Kira and she's recovering from the surgery. I'm praying she continues to have a successful recovery. Please keep her in your prayers as well. Thank you.

P.S. I'll update more on how I'm feeling and what happened at my ENT appointment later, when I feel up to it. I've sat enough for today, or at least for now.