Never Say Never (No it's not about Justin Beiber)

Well it has been an interesting few weeks. I apologize for my lack of blogging; however, I had a good string of days and I wanted to utilize them to the fullest. I couldn’t believe that I had more than one good day in a row, considering I had just written how that never happens. I guess that stands to reason, never say never.

Last week I had an incredible week. Everything seemed to be going strong and healthy for me. I did continue to twitch but it is not something that will bother me as much as the pain. Two days ago the pain came back and it was a little frustrating. Once I started having good days, I expected them. It was a blow to my senses when I woke up with my back pain again. I have been able to avoid taking my pain medications for several weeks. I am trying to learn to deal with the pain naturally at this point. I am laying flat more often, resting more and actually asking for help! Those of you who know me realize that is a HUGE feat for me because I am so independent. My mother came over yesterday to help me with my daughter’s hair. As you know it’s difficult for me to wash and style my own hair, but my daughter has this super curly hair that is difficult to comb. When I wash and style her hair, it takes me hours because her hair tangles so quickly and easily. God bless my mother for her patience and strength through this endeavor. She has been my rock and I love her so much.

At this time my symptoms are as follows: headache is still persistent but the migraines have subsided for the time being (knock on wood), I have mid-back pain (by the shoulder blades) that resonates up to my neck and down my spine, I have twitches that happen quite frequently (although they are becoming less “visible”), and I am run down and tired. I do celebrate the victories of not having migraines…that is incredible! I am still able to function as a normal person and I don’t let this get me down. I can work, interact with people, and have a “normal” life at this point. I am trying to live my life to the fullest and show people that even though I am afflicted with a rare neurological disorder, I can still be me.

Take the Good With the Bad

I have had my fair share of ups and downs in the last several days. I have also found a direct correlation to the pain and I wish it was a great one. Basically what I have found is that if I have a good day, it is always followed by at least one really bad one. I found this out this weekend by having a really good day on Sunday. Monday and Tuesday were really terrible for me physically. I had severe back pain on both days and then I had a migraine on Tuesday.

I wish I was able to just have more than one good day in a row, or really have a good day followed by a moderate day. It’s scary to think that every time I have a good day, a bad one will follow. I’ve become fearful of the good days and that’s not at all what I wanted to have in my life. I could dwell on the negative that this brings or I could look at the fact that I really must take advantage of the good days by doing the things that I won’t be able to do on the bad days.

It’s hard not to be positive when the negative is staring me in the face, so I thought I’d share a bit about what is staring me in the face daily besides my green eyes. There are a ton of things that I am no longer allowed to do and things I shouldn’t do. Below is a very small list of them and I thought that it would be an interesting thing for you all to see.

Avoid activities that may make symptoms worse If you've been diagnosed with syringomyelia, avoid any activity that involves heavy lifting, straining or putting excessive force on your spine. Examples of activities to avoid include:

·         Playing high-impact sports, such as football and Rugby

·         Riding roller coasters

·         Sky diving

·         Straining during a bowel movement

·         Excessive coughing (talk to your doctor about treatment if coughing persists)

I found the above and a lot more information at http://www.bing.com/health/article/mayo-126787/Syringomyelia?q=syringomyelia.

Although you will not find me on a roller coaster or jumping out of a plane, you will find me spending every day grateful to have the opportunity to live my life. It may be a life that is not quite as eventful as it would have been had I not been diagnosed with Syringomyelia, but it will be full none-the-less.

What Syringomyeia "Looks Like"

Yesterday was probably the worst day of the weekend (physically) and I completely avoided my hometown festival all together. I had a migraine and severe neck pain. I think I’ve hit an emotional wall with this lately. With everything that is going on and the rapid progression of my symptoms, I’m really scared. Something I’ve been battling internally is the fact that my syrinx (cyst) has likely grown. That is my team of doctors’ thought, anyhow. I’m scared to find that out though because it’s possible that I will end up needing surgery and I am not mentally ready for the ramifications of that…I’m terrified.

I realized that I have never shared what my disorder “looks like.” Although I do not have a copy of my MRI to share with you all at this time, I would like to share a drawing that I found that will depict what I have inside my spine. You can find this website at: http://www.backpain-guide.com/Chapter_Fig_folders/Ch08_Congen_Folder/Ch08_Images/08-4_Syringomyelia.jpg

My cyst runs from the middle of my neck to my shoulder blades inside of my spinal cord, just to give you an indication about how big my cyst is. Hope it helps give some perspective.

What Can I Say?

Well this weekend was a challenge for me. It was the first time that I had so many people who know and love me in one place. It was our hometown’s festival and so I was asked a lot about how I was feeling. I was very reluctant to say how I really felt because I wasn’t feeling that great. I was very weak and tired. I ended up telling people that I wasn’t doing amazingly. I’m sure that what I said to people seemed like I was seeking sympathy…and I truly sad that it probably appeared that way. My intention was only to show that I do have off days and I won’t be perfect all of the time. 

I found that when someone asked me how I was doing, they really didn’t want the honest answer because the answer wasn’t as positive and it should have been in their mind. When I answered honestly I saw the “pity” face from people I rarely talk to or see more than I was prepared for this weekend. I don’t think people realized how bad it truly can be and when I explained my symptoms. That being said, I really appreciated everyone asking how I was doing and I know that the majority of everyone really did care about how I was doing. In case anyone is interested I found a list of ten things not to say to someone with Syringomyelia on several websites. I tweaked some of the responses because they didn’t represent how I felt. The original list can be found here: http://www.medhelp.org/posts/Chiari-Malformation/10-things-NOT-to-say-to-some1-with-Chiari-or-Syringomyelia-or-related-conditions-for-that-matter/show/1501770

10. Must be nice to sleep all day. [Sleep is a luxury with as much pain as I have. You can tell I don’t sleep by looking into my eyes.]

9. You’re lucky you don’t have to work [everyday]. [I do work, but there are days that the pain and migraines are so severe that driving an hour and a half to work is not logical. I do continue to telework and use my blackberry/gotomypc while I’m home.] 

8. I can relate. [Well actually, it’s unlikely that you can relate completely. Yes, headaches are not fun. I’ve had the same one for six months.]
7. Why don’t you just take something? [What else could I possibly take? I am on nearly every medication known to mankind for my disorder. I am prescribed nine times the normal dose for one of my medications.]
6. You should just try harder. [Try harder to do what exactly? Do you think I can "try" to be healthy?] 
5. Just be positive. [I believe that I am being as positive as possible. I have a disorder that will likely cause me to be physically disabled and I will likely be in debilitating pain for the rest of my life…how would you react if it were you?] 
4. I think you just want attention. [Yep. I really want to feel pitied for my life. I take nearly 15 pills a day, writhe in pain, spend thousands of dollars for testing and treatment, and have no sleep just because I want you to notice me.]

3. It’s all in your head. [Actually, it’s all in my spinal chord. I had Chiari Malformation, yes it would be in my head, too.]

2. It could be worse. [Indeed it can and I constantly think about that fact. I pray every day that it does not get worse.]
1. But you look good, are you sure they diagnosed you correctly? [Thanks for the compliment…I wish they were wrong but the MRI’s and three doctors are likely not wrong.]

I just thought these were interesting to see and hopefully they don’t offend anyone. However they are pretty common to hear these days. At least now if you meet someone who has this Syringomyelia or a similar disorder you can NOT ask these questions or make these comments. I also found this on a chronic pain website and thought that they were interesting. If you know someone who has a chronic pain disorder please be sure to do some of these activities for them. I don't mean for you to do these things for me because luckily I have amazing support from my family. Encouraging words help, though. Find the original list here: http://chronicpainsite.com/MB/forum_posts.asp?TID=3081&title=ten-things-not-to-say-to-someone-with-chronic-pain 

10 Tips on HOW TO HELP Someone with a Chronic Illness

1. Listen without advising or judging.

2. Say, “I’m going to the store tomorrow. Is there anything I can pick up for you?”

3. Offer to take him/her to the doctor or dentist and do something fun afterwards.

4. Bring him/her flowers or a healthy dish.

5. Offer to take care of his/her kids for the day.

6. Give him/her a gift certificate for a massage, a pedicure or the movies.

7. Show up with cleaning products. Bring him/her a favorite beverage and a new magazine and tell him/her she isn’t allowed to help as you speed clean his/her house. Tell him/her you’ve seen it all and not to be embarrassed.

8. Buy him/her an encouraging book and include a bookmark with a note from you.

9. Give him/her a gift subscription to an encouraging magazine.

10. Have a “girly” day, visiting a craft show, having tea, getting your hair done, or seeing a “chick flick.” [Have a “manly” day by going to a car show, to Hooters, or something guys like to do…] 

Hopefully you all can gain a new perspective on chronic illnesses by reading this blog entry. Thanks again for all of the support and understanding through my treatment. I realize that many of you are unsure of how to treat me with this disorder; however, it is really important to me that you treat me just as you did before. I appreciate prayers, thoughts and encouragement...just don't put me on a prayer list or anything like that by name. By doing that it introduces the possibility for pity...I really don't want that. Thanks again!

Oh to be Normal Again

I apologize for the lapse in time since my last entry. I have been extremely busy with work and home. I have been battling several issues with my SM and it’s been a difficult few weeks. I have had several migraines, spasms and twitches on top of the constant back pain. I’ve missed the days when I have felt “normal.” It’s been so long since I have been without a headache. I’m still searching for the miracle pill to get rid of those, but it’s not out there I fear. I have been using Excederin some and it has been helping a little. I spoke with a co-worker and she gave me a name of a medication that I should try and I can’t recall the name! It starts with a Z so if you all have any idea of what it is please let me know!

Other than the headaches and back pain (today my back feels like it is pinching)  I have been alright. I’m still extremely weak and have been really upset about that. I lose strength doing the simplest of tasks. I lose strength whenever I even wash my hair! Today I washed my hair and had to take several breaks to get all of the soap out. I believe I have mentioned that before but the fatigue has gotten much worse these days it seems.

I did speak with my doctor and he has requested that I get another MRI to see if my syrinx (cyst) has grown. I believe that he thinks it has or he wouldn’t request this procedure. The thing is I am not going to do the surgery right now even if it has grown. I am terrified of the after effects of the surgery. I cannot risk losing my proprioception. (“[Proprioception ] is the awareness of our posture, weight, movement and position of limbs, both in relation to our environment and in relation to other parts of our bodies.” )  I am terrified that the surgery will impair me more than it will help me. I’m trying to stay positive through all of this and it’s becoming increasingly more difficult with the symptoms increasing like they have been.

I appreciate everyone praying for my recovery and improvement. It means so much to me to have family and friend that care so much about me. I love you all very much and I thank you for your support.

Symptoms Revealed

I have completely overdone it for the last several days. My son was sick and I lifted him…yes I realize that he weighs over 40 pounds and I should not be straining. Apparently, I did not think about that when he was crying. My motherly instinct overrides my SM reflexes. My shoulders are hurting and I have the residual pain in my shoulder blade area now. Luckily my son feels better and I won’t have to lift him any longer.

I’ve had a few episodes of fainting lately. I’ve been thinking maybe it was the Texas heat or maybe it was the neurological medication. Apparently, it’s the Syringomyelia. Again with me it is one of the “rare” symptoms that always seem to appear from out of nowhere. Below are the symptoms that are associated with Syringomyelia (SM). If you pay attention to the very bottom section regarding autonomic symptoms, you’ll see that this is one of the rare symptoms. I do have many of these symptoms but not all, thankfully. If you are interested in finding out what all of my symtoms are you are welcome to send me a message to ask. Otherwise, let’s pray that I continue to keep from having them all!

I found these symptoms at http://www.csfinfo.org/sites/default/files/cm_sm_handbook.pdf which has provided me a lot of information regarding my diagnosis. If you get a chance check it out because it will show you a clear depiction of what I have.

SYMPTOMS RELATED TO SYRINGOMYELIA

1. Motor

a. Muscle weakness and atrophy, particularly in hands and arms

b. Increased muscle tone (stiffness or spasticity) in arms and/or legs

c. Abnormal curvature of the spine (scoliosis)

2. Sensory

a. Decreased feeling in hands and arms. Depending on extent and level of syrinx cavity, legs may also be affected. Sensation involved may be pain perception, temperature perception or position sense.

b. Exaggerated sensation (hypersensitivity) in limbs, particularly arms

3. Pain

a. Midline pain over the spine, particularly the thoracic area

b. Burning pain in arms, over trunk and rarely, legs

c. Joint pain, particularly in shoulders

4. Sphincter Problems

a. Urinary incontinence, sometimes with spasticity of bladder

b. Fecal incontinence

c. Male impotence

5. Autonomic symptoms

a. Dysreflexia: wide swings in blood pressure, often accompanied by profuse upper body sweating

b. Drooping of one eyelid

c. Syncope (fainting or near-fainting), which is relatively rare it is not uncommon for some of these

I Finally See Signs of Relief!

I had a few days of massive headaches and migraines this week. I made it through though! For some reason I feel a bit better today and I am so very grateful for that. I have been in a very upbeat and energetic mood during the day today and that has been a complete flip from what I have usually been like. I did feel a swift decline once I started on my commute home. My shoulder blades did start to hurt and I lost a lot of energy but I am going to remain positive and we will see how I am tomorrow!

I continue to struggle with weakness in my body. The time I recognize this weakness the most is when I wash my hair and style it in the morning. I am sure everyone is pretty tired of seeing me in a bun…I know I am tired of wearing them! I am going to attempt to straighten my hair tonight to see how long it might take me. I anticipate taking several breaks during the process.

On another positive note, I really think that my Gabapenten is working on the burning back pain. Even the warmth is gone most days. The numbness in my fingers is now gone and I am so excited about that! The things that are now lingering are the twitches in my muscles, my foot cramps, and my headaches. The twitches in my muscles have begun working their way through my body. I have the twitches now from my eyelids down to my toes. They are not painful in the least but they are quite strange feeling. It feels like a centipede is crawling upward and backward through my skin…that can definitely wake you up at night! I have been getting a little less sleep than normal, which is actually like not sleeping at all. I pray that the subsequent days will prove to allow for more sleep.