WOW!! It's Been Quite A While!

I can't believe how long it's been since my last post. I can barely get to the sites I love to visit in a day so I rarely get a chance to blog anymore.

PAIN:

No such luck with significant relief. These days, I'm a happy camper if I can get the pain level between 7 or 8, on a pain scale of 1 - 10. Almost 4 years since being diagnosed (Aug 28, 2006) and I'm still waking up with level 10 - 10+ every single day. Unfortunately, the only way to stop this would be not to sleep overnight and that is not a potential solution I wish to venture into.

In February, I was given a prescription for Fentora. It's a medication used to treat pain in cancer patients. The insurance company denied it so we thought all else was lost. It cost approximately $660 for this medication and there was no way we"d spend that much without knowing if it would work.

Well, at my last pain management/physiatrist appointment (May 6th), the doc provided me with a voucher to submit with the Fentora prescription. This voucher allowed the medication to be free. I've tried it when the pain level has been 10 - 10+, and very little relief from my daily medication regimen. It has lessened the pain AND spasms. It's still not lower than a 7 or 8 but I'll take that over 10+. I've gotten so use to being in such extreme pain that a 7 or 8 is a blessing. I always use icepacks throughout the day because it provides short relief and numbs the area.

NEW SYMPTOMS:

Speech Apraxia: This started sometime around November 2009. It was initially a very scary symptom. I didn't want to talk because I sounded crazy.

• There are times when these strange words come out that make no sense at all, it sounds more like gibberish from a baby.
• Then there are times when what I'm trying to say is not what comes out. The whole sentence is switched around and out of order, making it difficult for others to understand what I'm trying to say.
• There's also an issue with pronunciation. Many words are very difficult to pronounce so when the words are spoken, again, it's difficult for others to determine what word I'm trying to pronounce.

The good news with the speech apraxia is that I've had time to work on the issues that I can. It's not something that's easily done, it really depends on the situation and group.

New, Painful, Spinal Sensation: There are already times when I' experience very painful sensations in my thoracic spine. Then there's the painful sensation that feels like someone is trying to yank my spine out. I've recently started experiencing a different type of painful sensation throughout my thoracic spine. All of these types of sensations hit fast and hard, but thankfully they don't last very long. They're strong enough though, to cause me to yell out from the pain, then they're gone.

Head Tingling: This sensation of head tingling occurs all day, everyday. The only thing that changes is the area of the head in which they occur. They're not painful, however, they are quite irritating. I wonder if it's a feeling I'll ever get use to. I've mentioned this irritating tingling to all my doctors but not a one has said what could be done about it. So, I guess this is yet another symptom I just have to get use to.

If I've forgotten any new symptoms, I'll include them in the next update.

TESTING:

I had a lumbar puncture/LP (spinal tap) done to release CSF pressure in hopes that my vision would get better. Amazingly, it did get better. Unfortunately, the blurriness is returning, thankfully it hasn't reached the point it was at before the LP. The Evoked Potential testing was done last month. I'm waiting for a follow-up appointment with the second neurologist/NL (refferred by my current NL) to get the results of these tests. The Evoked Potential test includes 4 individual tests to determine how certain areas of the body are effected by certain stimuli. Waiting, waiting, waiting...................

OTHERWISE:

I'm hanging in there. Previous symptoms still exist. I'm taking it one day at a time. Trying not to allow stress in my life. Participating in family events, outings with family and/or friends, etc., as my body allows. Most days are spent in bed. I get up in the chair but am not able to sit for long without the pain increasing. My focus is to do whatever it takes to keep my pain level as low as possible. However, I try really hard to participate in all family events. I worry about the pain later, what's a few more days in bed when almost everyday is spent there anyway.

I love the adjustable bed provided by my brother-in-law. It allows me to adjust myself in laying and different levels of sitting positions. I use my laptop when I'm able. Most times, I can only read, without responding. If I'm on Facebook, I love that there's an option to press the "like" button. When I'm not up to typing, it's perfect. It let's a person know you're thinking of them.

Life is good, GOD is great.

I hope everyone is having a fabulous day. I hope my ASAP family are all managing well. Please pray for all the members, including caregivers, at ASAP.

Better Late Than Never...

I've been experiencing some rather odd symptoms lately. The spasticity in my right-sided leg and arm now moves up to my lips/mouth. This has been happening for over a month now. My physiatrist didn't see any cause for worry due to the way it presented. Meaning, it was was totally related to the pattern of the spasticity rather than stroke related.

A week ago, this past Sunday, I had an episode where the tremors start in my legs and goes up to my head. These tremors are very hard to control, and sometimes occur back to back, which was the case on that Sunday. Mickey did all he could to control/stop them, thank GOD. However, after the last one (there were 3), I realized that my speech was strange. To me, I sounded like daffy duck, even spitting on myself when speaking. Over the course of a week, I learned to speak in order to be understood by others. It's quite difficult w/mouth spasticity, and tongue issues, but can be done.

I made an appointment w/my PCP which was yesterday, Tuesday November 3rd. She referred me to my Neurologist/NL so I immediately called his office and stated that I need an emergency appointment. Dr. X is out of the office on Tuesday and Thursday. The nurse spoke w/Dr. X about my concerns and called me back w/appointment for today, November 4th.

Another symptom that has increased in severity and occurence, is the headache in the lower back of my head on the right side. Mickey stated his concern over this symptom because there was a time, I guess a few months back, when they were uncontrollable and constant. Eventually, they became less frequent and intense, but I do still have the headache on a daily basis.

So, I'm off to my appointment w/the NL. I will try to post the outcome when I return home.

Please keep everyone at the ASAP support group in your thoughts and prayers.

I hope everyone is having an enjoyable, and manageable, week!

I Just Don't Care Anymore.... Why Should I?

Three years have passed me by. While I've learned a lot about myself, and the condition I have, I've come to find that I just don't care anymore, about any of it.

I'll continue treatment, I can't handle the pain I have w/meds, let alone without. The pain, symptoms and progressions are never-ending and relentless. I'm tired of it all. I have no choice but to adapt to whatever comes my way because my faith will not allow me to give in and give up. My faith will not allow me to take myself away from it all, no matter how much I really want to.

I'm so tired of putting a smile on my face everyday so those around me don't bail on me. No one wants to be around someone who's miserable ALL the time. So, for 3 years, I've continued to smile when all I feel like doing is crying. I'm tired of no one being able to understand what's it's like to live the way I have to, each and every day of my life. It's not anyone's fault they don't understand. If it meant anyone would have to suffer the way I do in order to understand, I'd rather they not understand. It doesn't make my situation any better that they don't understand though.

I've tried focusing on the positive. I do have positives in my life. However, the functionality and independance I've lost are with me everyday. There's no way to escape the many things I'm unable to do, or the person I'm unable to be. I don't want, or like, being the person who suffers from so much pain, who can't walk, who can't drive, who can't go anywhere without depending on the mercy of others, and many other can'ts. I don't like being the person who can't!!!!!!

Today is a beautiful day outside. I'd love to get out of the house, no matter how much pain I have. I'd love to go to the beach. I have no one to take me and my hubby hates the beach. Before, when I felt like going to the beach (it isn't often), I'd get in my car and go. Not today, today I CAN'T go. It doesn't matter that I'm in a tremendous amount of pain, it doesn't matter that the pain will be worse both during, and after, going to the beach.

Preparing for the trip alone is very tiring and painful. Since my hubby won't take me, finding someone else to take me is very difficult. It takes too much just to get me, and the electric/heavy wheelchair, in and out of the car. Realistically, Mickey is the only person who will, and does, bother with the wheelchair. I thank GOD for Mickey and appreciate all that he does with all my heart.

Speaking of the wheelchair. There were so many people who said, if you had a manual chair it would be much easier to manage. I heard things like, we could go here, go there, do this, do that, blah, blah, blah. I have a manual wheelchair. I've had it all summer long. The only time it was used was to take my daughter-in-law to lunch one afternoon before summer. I digress.

It's not only having/needing assistance (being pain-free is out of the question) that keeps me from going out, or doing the things I'd love to do, and things I really miss doing. I hinder myself most of all. My desire is most often greater than my actual ability. In my heart, I want to do many things but when I try, most often I don't succeed.

I don't like letting the pain keep me down. I try very hard to fight the pain and do things regardless. When I do things, no matter how small, I'm the one who has to pay dearly for it both during, and afterward. Most times, the pain is so excruciating that no matter how hard I try to will myself up and out, it just doesn't happen. I HATE IT!!!! I hate letting the pain win.

Most times. when I think of going out, I have an internal struggle with myself. This is the fight against the pain, or the fight against my emotions. A fight against my emotions because when I do go out, I have to smile and be happy so those around me, 1) don't feel bad about letting me talk them into taking me, 2) don't get upset w/me for the same reason, 3) don't stop taking me on outings or 4) most important, people around me can enjoy themselves wo/worrying about me.

If people feel like they have to worry about me, they might not be so willing to take me along any other time. If people pay for events, I'd feel really bad if they couldn't enjoy themselves because of me.

Three years is a very long time to have to depend on others. Only I know how hard it is to depend on others. Only I know the many things I've gone without, or without doing, because of how hard it is to keep asking for everything, or for someone to do this or do that. I'd only ask out of sheer necessity and that's not a good way to live. IT'S AWFUL!!!!!! Even asking for things out of necessity makes me feel like such a burden to others. It's not a matter of how the other person/people feel. It's how I feel. Three years is much too long to depend on others.

I try doing many things for myself, no matter how hard it might be. All I get for it is more pain, and an increase of other symptoms.

All these issues, and many more, are just too much to deal with day in and day out. No one knows, or understands, this better than I do, or more than I can. I try to live one day at a time. Each day still consists of the same issues and/or concerns. I'm seriously too tired of it all, everything. All I want to do, all I need to do, all I can't do, blah, blah, blah.

I HATE LIVING THIS WAY, I HATE WHAT THE EFFECTS OF SM HAVE DONE TO ME. I HATE THE ME THAT I'VE BEEN FORCED TO BECOME. I HATE NOT BEING ABLE TO CHANGE THE PERSON I'VE BECOME DUE TO NEVER-ENDING, AND RELENTLESS, PAIN AND OTHER NEUROLOGICAL SYMPTOMS.

Life goes on but I just don't care anymore. Why should I? The pain and suffering will only continue.

Please continue to keep the sufferers, and caregivers, at ASAP in your thoughts and prayers. Thank you all.

I hope everyone is having a terrific weekend!!!!!

Update - It's Been Quite A While!!

I have experienced several progressions since my last post. The pain continues to worsen, I began having severe spasms in my thighs and spine, the tremors always worsen, the headaches are daily now but only on the right (lower back) side of my head that have caused previous on-going neck pain to increase w/spasms.

My husband and I had a discussion with the physiatrist to try to see if there were any new treatment options available to me. We discussed syrinx stenting (rather than shunting) and several surgical treatment options for pain.

Two pain treatment options were ruled out immediately due to the potential to cause trauma to other areas of the nervous system. Stenting isn't a preferable, or logical, option for me, as far as I'm concerned, and the doctor wasn't too keen on it either but since it is now an available treatment option he was willing to discuss it with the neurosurgeon. The doctor then suggested we try an intrathecal pain pump. After a thorough explanation (we thought), Mickey and I agreed that this might be the better path to take. It would potentially decrease the amount of oral medications I take. My list has changed a lot due to increasing, on-going debilitating pain and neurological deterioration.

Mickey and I waited patiently to hear from either doctor over the span of a month. However, by the time my June appointment arrived, we hadn't heard from either one. While I understand that these brain and spine surgeons are extremely busy, I thought it was quite rude of the neurosurgeon to not respond at all to the physiatrist. So, the physiatrist will correspond with the neurosurgeon again. If he still doesn't respond, we will need to see another surgeon because this is the next step in my treatment and could provide an opportunity to increase my quality of life.

I'm tired of the continuous oral medication increases. I was one to wait as long as I could before taking pain medication. I would suffer until I just couldn't take the pain any longer. Of course, I hoped the pain would go away and sometimes it did so I didn't need to take anything. Now, I have no choice because the pain is always there, even with the pain medication.

My neurologist ordered new images of my thoracic spine, the imaging center did an MRI of the brain and full spine. They only reported on the thoracic spine though. There were changes with the length of the syrinx and I now have two new hemangiomas/tumors at T9 and T11. The tumors are what cause the spasming pain in my spine, ARGH!!!!!!!

I continue to see the orthosurgeon every 6 months (after the first 1 1/2 years). Basically, these doctors monitor my progress and make any recommendations, or changes, in my treatment plan that would be necessary.

I often awake in the morning with a swollen right eye that drains clear fluid until the swelling goes down. The orthosurgeon suggested I see an ophthalmologist first thing in morning. He told Mickey not to wake me until it is time to go to the appointment so the doc gets a chance to see exactly what's happening. I am within a block or two of all my doctors which makes it very convenient on appointment days. I'm still searching for one that is covered under our insurance plan.

I have never hated anything, or anyone, in my life, until now. I HATE the effects of syringomyelia with a passion. It will be 3 years, on August 28th, since my nervous system went haywire. My body has gone through so much trauma and neurological abuse that it's really unimaginable. By the Grace of GOD, I'm hanging in there and able to force myself to participate in some family activities and functions. I always enjoy myself!!! Then there are times when I feel like I can do something, probably because it seems so natural. However, it often turns out to be a desire but not a reality. The chronic high-level pain, with a number of neurological symptoms, prevents me from doing a lot (just about everything) and more often than not, the bed is a constant companion.

It is extremely difficult to live this way and I often find myself thinking of what I can do to end the constant agony. Most people with SM are told they look normal. Once you realize there's no choice but to carry on, you do what it takes. You're not dying but you often wish you were because of overwhelming pain and neurological deficits. There's nothing broken, however, your nervous system wreaks the worst internal havoc on your body. It's hard to explain all the strange/bizarre/most times painful, sensations that the body experiences throughout each day. It's pure emotional and physical torture, knowing that you have no choice but to deal with the pain and other symptoms. By the Grace of GOD, I awake each morning (smiling through teary eyes, despite the highest level pain), deal with whatever symptoms arise all day long, enjoy time with my family when I can, then go to sleep knowing I have to do it all again the next day. There's no way out of this heart/gut wrenching nightmare.

Until next time, everyone struggling or suffering in anyway, I wish you the best in your life. I pray we are all able to manage each and every day.

I hope everyone has had an enjoyable day!! Summertime/Funtime!!!!!

Pinky Talk

For those who have asked after Pinky, she is doing well. She is a terrific and smart little pup. She'll be 7 months old on the 24th of April and she's grown so fast. She moves with a swiftness for such a small puppy that I should have named her "swift lightening"!

She eats well and enjoys treats, especially those given for good behavior (with head rubs). I'm amazed everyday at how smart this little animal is. If anyone had told me that their dog was smart, I probably would have shrugged it off, if it weren't for Pinky showing me the error of my ways.

She started out as a little ball that I could hold in the palm of my hand. I now need both hands to hold her, she's gotten heavier and longer over the last 3 1/2 months in my care. The funniest thing to see, is her standing by the refrigerator in my bedroom, to let me know she wants a snack. Sometimes, she'll come close to me and bark, then point her little head in the direction of the refrigerator. Other times, she'll come by me, bark for attention but when I reach for her, she runs to the refrigerator instead of letting me pick her up.

Another of her funniest moments, is to have me call out her name while she's hiding behind some object or the in the hallway. When she's caught, she has this look of the kid who stole the cookie out the cookie jar, it's hilarious!!!

She's very protective of me, especially when I'm in distress from excruciating pain or severe tremors. She doesn't want to let anyone near me and if they try, she'll bark at them in this real high pitched bark. She's so small that she doesn't intimidate anyone, but it's endearing (and funny) to watch.

She's helpful and comforting when I'm at my worst. She's afraid of the leg tremors and will bark at my legs. However, when the arm tremors start, she'll thrash her body across my arm in an attempt to stop the tremors. When they stop, she'll lick my arm and then go back to her business. If I'm crying, she'll immediately come to my side and sometimes she'll try to lick my tears away. It's amazing how she just knows when to "just be". She'll just come to sit beside me as if to let me know she's there if I need her. It's all something to observe when I'm having a bad/rough time, or day.

She's great with the kids. I know the warning about having young children around these small puppies/dogs. However, she's great with my grandson and granddaughter. She knows when they are in the house and barks to either be put down to get to them, or to let them know she's waiting. It's so adorable!

I still don't have photos to post but hopefully soon.

Take care, I hope everyone has a wonderful day!

What's going on?

I've been doing the same with some days rougher than others, yet I manage to keep a smile on my face most days. I can't help but believe that a positive attitude can only make the situation better, even with family and friends. No one wants to be around a person who spends their days being miserable. That old saying "misery loves company" does not reside in my home. Instead, I believe that my being miserable has nothing to do with those around me. I might be having a horrible day but I don't have to impose that on everyone else.

Those horrible back and leg spasms are still a constant in my life. They have yet to resolve and we (PM doc and I) have not found the right muscle relaxer to help provide some relief. I already knew Flexiril was out, from prior experience.

Recently, I've tried a month of Skelaxin that caused an enormous increase in body swelling. Last month I was switched to Soma that caused an increase in these horrible headaches at the base of my skull. I can tolerate a few headaches a month, but when it changes to 3 or 4 a week, it becomes intolerable. On the 30th of March, I was switched to Baclofen. Mickey picked it up from the pharmacy yesterday and I started it this morning. I hope this is the one that does the trick. If not, that's it for me. I told the PM doctor that I can not continue to deal with the spasms (that feel like charlie horse's) and whatever side effect these muscle relaxers are causing.

Thankfully, I have not experienced any new, or increasing, symptoms since the spasms. Well, not any related to SM. Only those that were caused by the muscle relaxers, but I'm hoping that the "3rd times the charm"!

The members, and caregivers, at ASAP (www.asap.org) need your thoughts and prayers. I appreciate everyone who passes their good wishes along to my ASAP family.

I hope everyone has a pleasant day!!

It's Been A REALLY Long Time!!!!!

Gosh, I didn't realize I haven't posted all year long. I guess I've been sleeping my life away these past few months. My pain has begun to increase back to 7-9 again so my pain management doctor was working on trying to bring it back down to 5-7, or better.

It's been a struggle but it seems we're finally getting somewhere, even if it's only because I sleep for several hours after taking each dose of medications. While I'm sleeping, I'm not feeling the pain. It seems like it's a terrible situation but really, it's not. I can remember not being able to sleep because of the pain, so at least I'm able to sleep now.

I can't remember if I mentioned it or not, but my pain management doctor wanted to spend more time on surgeries and less time on patients who only came in for check-up and narcotic scripts. I was switched to another doctor who's a physical medicine and rehab doctor. He started a more aggressive approach for treating the pain, than the PM doctor did. We have more work to do because, although I'm sleeping through the pain, when I'm awake it's still very high.

Mickey's employer changed medical insurance carriers again (due to the buy-out) so when we went to get the prescriptions filled in January there was approximately $140 increase. It made me sick to my stomach to worry about being able to purchase them each month. Lyrica and Oxycontin are the highest, with both being close to $100 each. Thankfully, I had extra Lyrica from when we were trying to work out the correct dosage, that helped keep the cost down for February. Now we'll have to work out March and the doctor said he probably has enough samples to fill a script. I sure hope he does.

I'm trying Skelaxin also. I didn't like the way it made me swell each morning, but it did help with the back and leg spasms. Due to the extreme swelling in my hands and feet, I'll ask if there's something else he could recommend. I couldn't even close my hands and there was one finger on my right hand that would pop before it opened. At least the Skelaxin was provided in samples and I didn't have to pay for it.

My new puppy "Pinky" is wonderful. She's a little cutie pie. We're working on her aggressive behavior but when she's not being aggressive, she's the most loving puppy there is. By aggressive, I mean she nips, barks, growls and bites at me and others. She even tries to push people out of her way with her head. She doesn't like to be left behind, if I leave the bedroom she makes sure she's right behind me. If I leave the bed to go to the restroom, she wants to go. She use to try to type for me but I've gotten her use to laying in her bed when I'm on the computer. Then, no matter what she's doing, she doesn't like to be too far away from me. Mostly, she's right under foot. I didn't think I'd be this happy with having a puppy but I guess I surprised myself. Aside from the aggressive behavior (mostly when she's sleepy, like a little baby fighting sleep), I'm very pleased with her.

Since I've been spending so much time sleeping, there's not much more to add. I'm hoping my body is still just trying to adjust to the addition of the immediate release Oxycodone and the increase in extended release Oxycontin. I really miss visiting ASAP several times a day. It really throws my entire day off track.

I hope everyone is having a pleasant day/weekend! Please continue to keep everyone at ASAP in your thoughts and prayers.