One Year Later and I’m Still Fighting Back

It’s been so long since I’ve updated this that I’m quite certain that I am going to have a completely new group of readers. My plan for this post is to summarize everything that has happened to me with my diagnosis of Syringomyelia up to where I stand today. Happy reading!

I was diagnosed on March 17, 2011 which happens to be my favorite day of the year, St. Patty’s Day and now my wedding anniversary. I was diagnosed from an MRI that I had on my spine and brain due to migraines and back pain. Originally, I went to the doctor because I had a migraine for 8 days straight. On the ninth day, I decided something had to be done. I had a constant headache from January and each day I suffered with the same, dull, aching headache. My doctor was afraid it was something in my brain so he ordered an MRI. While I waited for my insurance authorization to go through, my back began hurting. That’s when I went back to my doctor and he went ahead and ordered a full spinal MRI, also. The test lasted for nearly 5 hours. They ended up having to do two additional tests while I was in the machine. During this time, the fear I had was that I had a brain tumor. What I didn’t realize at the time, was that although that would be a very terrible thing, the chances of ridding myself of the tumor would have been a lot more simple than this diagnosis could ever be.  My doctor called me within 12 hours of my MRI to let me know the news. At that time, I had no clue what “Syringomyelia” was or even how to pronounce it correctly!

Throughout the year I experience a multitude of changes of symptoms. I have experienced nearly every possible symptom associated with Syringomyelia. We were concerned for several months that I was also suffering from Multiple Sclerosis. That was ruled out earlier this year (February). I was relieved to discover that I did not have that dual diagnosis; however, that 5 MRI series indicated a completely separate issue that I was diagnosed with in addition to Syringomyelia. I was diagnosed with Chiari on February 8 this year and was notified that I was not a candidate for surgery on February 22. I’ve had many stressful moments trying to come to terms with this prognosis. There is currently no hope for a cure and we cannot receive treatments to minimize the effects. Once symptoms are present, damage is done and cannot be reversed. My symptoms are pretty difficult to live with from day to day, but I survive and try to stay positive even though I know truthfully it will not ever really get better.

I am no longer scared of having what I have but I do get very frustrated that I cannot do things like everyone else. I cannot parachute this year like I planned on my 30^th birthday. I wanted to follow my brother’s tradition of his jumping when he turned 30. This is something I cannot do and it bothers me so much. I feel like I am held back from some things everyone else can experience. I’m beginning to come to terms with this but it’s hard to explain to my bosses. They have a hard time understanding my needs based on this diagnosis and although I have FMLA, I have major fears about being fired because I am sick. I’ve even been “counseled” on this because I needed to be in the office more according to my boss. It literally added twenty tons of stress on me when he told me that statement. Every since that day, I have to go to work whether I am feeling good or whether I feel like I will faint (syncope is one of my symptoms).

On a very positive note, I celebrated my one year anniversary of being diagnosed with Syringomyelia by marrying my best friend. My husband, Justin, has been there through the Chiari diagnosis and takes care of me when I am sick. He literally catches me when I fall and makes sure I have everything I could ever hope for to decrease my symptoms. Sometimes it works, sometimes it doesn't, but he always loves me. I'm very grateful to have him and my parents in my life. Without them, I don't think I could have survived this diagnosis.

My goal is that one day I can be a professional advocate for persons experiencing chronic illness such as Chiari and Syringomyelia. I would prefer to travel around the country informing people of these disorders. Chiari is much more common than Syringomyelia and is more known; however, Syringomyelia causes quite a bit of damage to our spinal cords and can paralyze or even kill us if we are not careful. Bobby Jones, famous professional golfer, actually died from Syringomyelia.  Research has come a long way, but there is no cure for either Syringomyelia or Chiari. I hope that I can raise money for the cause one day. Keep us in mind if you have money you would like to dedicate to a charity. I know of several organizations that could make your money go to great use for patients like me and several of the people I know and love suffering from this chronic illness.

Stay strong, live life, be bold, FIGHT BACK! -Misti

Bravery at Any Age

I met a sweet little boy today while I was at work. One of my co-workers actually has a son with Chiari! She brought him up to my office today and I found out that he is such a wonderful kid. He's very young but was very compassionate. He had his decompression surgery three years ago and while he was in my office he showed me the pictures from the day he went in to have surgery. I let him know that I am not a candidate for the surgery. We talked for a while about his symptoms and how it made him feel and we recognized that we had quite a bit of similarities. His mother and I talked a little about treatment options and medication. Luckily, he doesn't have to take very much medication.

The surgery actually helped him to fix some of his damage. I talked to them about his age and that his cells can repair much more quickly than mine which makes me not a candidate for the shunt for the syringomyelia. The fact that my CSF flow isn't as constrained as with many chiari patients, I am not a decompression candidate. As he was leaving my office, he ducked his head back in and said, "I really hope you can get your surgery." I almost cried. What an angel!

He, and the other kids, suffering with this are why I want to become an advocate. I so wish I could afford to do that! I still feel very torn about the possibility of having a fundraiser. My medical bills are piling up very quickly and it's just so hard to get them all paid. When each time I have an MRI it costs me $800 and I have to do this twice per year, the bills add up. My very first MRI session was $1800 my part. It's just insane! That's only for the MRIs (overall my MRI's have cost me over $4,000 which I have to pay out). The emergency room visits, monthly, quarterly, semi-annual and annual doctor's visits add up with co-payments, testing and medications that cost money. It's about a $5,000+ a year disability in which I will never be rid of in the future. That is a scary thought for those of us afflicted.

I want to live my life more like Araja. He is a very positive and outgoing young man and I aspire to have his perky attitude for the remainder of my days. I want to be strong, not only for me and my family, but also for people like him that have to also live with what I do...and do so with great bravery.

Accepting Help

Yesterday was a major test for me. It was the worst pain I had endured since the diagnosis and I didn’t pass the test very well. I am a very headstrong and stubborn person. Those of you who know me are nodding your heads right about now. One of the things that I have to learn to deal with is that I am not able to be as independent as I want to be with this disorder. I have to learn that I need to accept help and ask for it when I need to be helped. It has been a struggle for sure.

Because of the pain, I tend to push people away because I do not want them to have to go through the pain of watching me suffer. It’s not my most prized memory to have someone watching me while I can’t move, but I realize that because people care about me they want to help me through this time. I have to let them help me.

Part of my problem is that I do need help, but I don’t want to admit that I can’t do it on my own. That is the MOST frustrating thing in the world for me. I have been doing things for myself since I was a very young child and here I am, 29 years old, and needing people to help me with the simplest of tasks. I’m not allowed to lift over a gallon of milk. Do you realize how frustrating that can be for a mother? It’s super annoying to not be able to lift my youngest child. I haven’t been able to lift my daughter for over 3 years now.

Another of my issues is that I don’t want to have to be on medication for the rest of my life. That is uber annoying. I especially loathe pain medication. There are several reasons why I can’t stand it and addiction is one of them. I have never been addicted to anything in my life (except food, yummy) but I know that addiction is something that I have feared my entire life.  I guess if I can’t allow myself to rely on people to help, I definitely can’t allow myself to rely on medication for help, either. I have allowed myself to take it again and I see why I was so adamant about not taking it…it doesn’t work. When you have as much pain as I have, it seems that the amount of pain medication I am prescribed is not enough to take away the pain. I will not take anything more than I am currently prescribed, though (even if my doctor says it’s ok).

So here I am, day two laying flat on my back wondering when the pain and symptoms will be relieved and I wonder if I will allow myself the help that I know I need. I truly am blessed with my family and boyfriend because I feel like they are always there to support and help me. I just need to allow them to do that and get over my idea that help makes me weaker. I realize that every day that I have to live with this I become stronger. Today I am stronger than I was yesterday, and that is a fact. I had an emotional breakdown yesterday and I rarely do that anymore. Today I feel confident that I will get better and move on to fight this with every fiber of my being. This grey cloud over me will subside soon; I look forward to the sunshine, again.

New Year, No Change

It has been so very long since I have posted to this blog and I am quite sorry about that fact. Many people have asked how things were going with my health and I felt that an update was warranted. Please forgive the long post this time. I will try harder to keep up with my blog to ensure you all get the information about my illness as quickly as possible.

I write this as I lay in bed because the pain has now resumed and is excruciating. I am trying very hard not to become discouraged with the rapid decline in my health; however, it’s becoming a very stressful thing for me currently. Those of you who are very close to me realize that stress is one of the worst things I have encountered with this disorder. It is like fuel to an already smoldering fire and the pain is so much worse and prolonged when I am stressed out for extended periods. I have decided that I need to go back to the doctor and be referred out to someone regarding the anxiety that has formed based on the diagnosis. I believe that the doctors will be able to aid me in my goal of being less anxious and stressed regarding this disorder.

I went through three or more magnificent weeks of limited pain and mild headaches. I was so very blessed to have gone through that during the holiday season. I was able to spend time with my family, dear friends and my amazing boyfriend and his family and I didn’t have much pain to complain about during that time. That was pure bliss. Unfortunately, with the New Year brought new pain and my symptoms intensified. Literally the first day of the year was the day that my symptoms returned at a greater intensity and they have not left since.

My current symptoms include:

o    Gradual loss of muscle mass (wasting, atrophy)

o    Headache (have had the same one since January 2011)

o    Muscle function loss

o    Numbness or decreased sensation (Index finger and Big Toe are the two most affected areas)

o    Decreased sense of pain or temperature

o    Lessened ability to sense that the skin is being touched (This occurs for me on my upper neck region and base of my spine)

o    Neck, shoulders, upper arms, trunk -- in a cape-like pattern (I’m a sloucher)

o    Slowly, but progressively, gets worse (That doesn’t seem fun, huh?)

o    Pain down the arms, neck, or into the upper back (Very severe at this time)

o    Weakness (decreased muscle strength, independent of exercise) in the arms or legs

o    Loss of bladder function (yeah, that’s a fun one to admit at 29)

Additional symptoms that may be associated with this disease:

o    Muscle contractions (Check)

o    Rashes (Check)

o    Spasms in or tightness of the leg muscles (Check)

o    Uncoordinated movement (Double check)

Because I have the majority of the symptoms of Syringomyelia and many symptoms that are in addition to these, I am still very concerned that there is much more to this illness than just the SM. I have been unsuccessful in getting into the neurosurgeon of my choice to confirm or deny the existence of Multiple Sclerosis (MS). I have mixed emotions on how I feel about that possibility because, of course, I don’t want to have another affliction that will place me in a wheelchair much more quickly than I wanted; however, with knowledge of what the additional factor could be comes treatment that could possibly help me through this pain and degradation.  Currently there is no cure for Syringomyelia and there likely will never be because of the fact that it is a cyst within one’s spinal cord. I do have faith, though, that even without a cure we can still lead normal lives with the right combination of treatments and medications.

As always, your continued support and concern is greatly appreciated. Thank you all for taking the time to get to know my affliction.

Possible dual-diagnosis?

I have had an increase in symptoms for the last month or so and I've become very concerned. I've now begun to feel a terrible burning sensation in my neck & face. It feels similar to heart burn but a little more intense.

With this increase in pain and symptoms and lack of increase in cyst size, I'm becoming more fearful that it is something more than just my syringomyelia. I spoke to my mom on the phone a lot this week trying to figure out what is going on with me. When I thought back I remembered there was a time we were scared this was Lupus and I never followed through on the testing because of the syringomyelia diagnosis. I now have more knowledge about Multiple Sclerosis and it seems it potentially something I could have in addition to my sm.

I go to the doctor to discuss this on Monday so please keep me in your prayers. I fear for my kids if they have a mom with two deteriorating disorders that could also be living inside of their precious little bodies. Syringomyelia is bad enough, I just pray that is all I have at this point.

Ergonomic Life

This weekend has been a pretty rough one for me. I spent the majority of the weekend lying down watching Netflix trying to get my back to stop throbbing. For some reason my back is now hurting lower than usual. I’m wondering if it is because I am overcompensating for the upper back pain.

My headaches have increased and they are starting to be a lot more irritating. I feel like I’m constantly battling these and it’s getting pretty frustrating. I have a feeling that my symptoms are increasing because I’m stressed out because my oldest child starts kindergarten tomorrow. That’s just happening too quickly!

Anyhow, I am just battling the regular symptoms lately and nothing new has surfaced. I do twitch a bit more frequently and I am having more intense headaches. The back has felt a bit better in the shoulder blade section and the upper and lower back have taken the brunt of the pain lately. I’ve received a demo chair at work that will likely help me to relieve some of the pressure on my spinal cord. There’s not much I can do about my neck region because I use the computer so frequently. They have recommended that I use something that will allow me to stand and work, as well. I am going to ask my superiors if I can utilize that item because I think it will relieve pressure on my spinal cord, too.

I have decided I am in need of a more ergonomic lifestyle. I am going to hope that my superiors allow me to be ergonomic at work, but I am also going to pursue becoming more ergonomic at home. I tend to work on my computer a lot at home and lately I've been doing that laying flat on my back with pillows behind my neck. This seems to be helping but I am going to start researching methods to become more ergonomic so I won't develop more symptoms as quickly as I have been lately. I do hope to overcome this pain and being more thoughtful in my work habits will allow me to do that more effectively. If anyone has any ergonomic tips, I would greatly appreciate them!

Play the Ball Where it Lies

Well this morning I woke up extremely early and couldn’t fall back asleep. I decided that since I couldn’t sleep I might as well research some Syringomyelia things. As you all know I have a great affinity for the tremendously talented Bobby Jones. He and I have quite a bit in common as I researched his life and his affliction with Syringomyelia.

I discovered a very eerie fact about Mr. Jones when I watched a video about his life and his battle with SM. He was born on St. Patrick’s Day! If you have been following the blog for very long you might have realized that was the day that I was diagnosed with Syringomyelia. I knew that St. Patrick’s Day was a very definitive day for me but I thought maybe it was only because I was diagnosed with this on that day. It appears that I do have another correlation with it besides being Irish myself.

I also found out that Bobby Jones had some other things in common with me. He did begin to have symptoms by having a constant headache and tingling in the hands and feet. Mr. Jones ended up being bound to a cane and a wheelchair for much of his later life. For the first time ever I saw pictures of him in his braces and wheelchair. I always see very positive looking pictures of Bobby Jones and so this was a great deal of shock to me to see that he did have a very painful life toward the end.

In the video Bobby Jones’ grandson described a few conversations that he had with colleagues of his. One of the men asked Bobby if there was a cure for this and Bobby said, “yes there is a cure,” and his friend exclaimed, “What?!” and Bobby stated, “Death.” He also stated that in golf you must play the ball where it lies and he said with life it is the same. He said that was the last time they would discuss it and he never brought it up to him again. I am trying to take a different approach to this than Bobby Jones. I really want to put the word out there that this disease is real and it affects 8 in every 100,000 people. It is not very common and no living celebrity has been diagnosed with this disorder so we don’t have much press time. I just want to help find a cure for this because it’s not a very pleasant disorder to have.

His family has been a very prominent part of the SM research. They are advocates for the Chiari and Syringomyelia Foundation.  After watching the video I am more convinced that I have been given this disorder for a reason. I would love nothing more than to share my voice with everyone around the country to spread the word about this painful affliction. I would love to meet the Jones family to tell them my story and to let them know about my connection with Bobby Jones. Hopefully someday I will be able to do that.

I do plan to have a golf tournament this March (around St. Patrick's Day) to help with syringomyelia. If you are interested in helping PLEASE feel free to contact me. The tournament will be held in Central Texas. If you want to volunteer your time, money or sponsor the event you can contact me at mistijadesunshine@gmail.com. 

You can view the video of Bobby Jones here:  http://vimeo.com/5223929