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

Why Being Sick with Syringomyelia Sucks

I have caught some sort of sinus thing this weekend and I have become a little nervous about the affects it might have on my syringomyelia. The research and doctors have continued to point toward the affect excessive coughing might have on my syrinx (cyst). My cyst is already pretty long but it has not grown substantially according to my most recent MRI. I pray that this weekend’s illness will not cause any increase in my symptoms. I’ve really been trying to hold my cough in so that I don’t increase the size of my syrinx.

So far the headaches have increased a bit but I believe maybe that is because of the sinus pressure. I haven’t had much numbness lately and my twitching has been a little less prominent. I am grateful for those things!

I wanted to show you what would occur if I were to have the surgery with a shunt placement. I have been searching for this for some time now and I have not been able to get a better image than this, but I’ll keep looking so that you can see what might happen to me in the future. This one is representative of what it would look like if my syrinx would grow a bit longer. Since my syrinx ends at the T5 it has a little bit to go before I can be a good candidate for this surgery. Unfortunately, if it grows, it means that I will be likely to suffer from more symptoms and damage in my nerves and spinal cord.

http://www.thebarrow.org/stellent/groups/public/@xinternet_con_bni/documents/webcontent/st031042.jpg  

I hope this helped to give you an idea of some of my fears from this past week and my fears for the future.

Out Comes the Sun!

I received a phone call the day after my MRI from my doctor at 9:35am. I was terrified when I saw the doctor’s phone number appear on my cell’s caller id. I immediately left my meeting and took the call bracing myself for the terrible news that surely awaited me. When the doctor spoke he asked me if anyone had called me about my MRI yet. I immediately thought, “When did they have time? I had my MRI yesterday after normal business hours…” but I just said no. At that point I was absolutely trembling and then he said that my syrinx (cyst) has not grown and appeared unchanged according to the radiologist. WHEW!

The only thing that was left to ask was, why in the world are my symptoms increasing if nothing has changed? I have a doctor’s appointment soon and I will discuss the possibilities with him. The good thing is that I completely trust my doctor with anything he decides we should do to try to minimize my symptoms. He’s really great and I couldn’t ask for a better pain specialist. I will see my neurosurgeon in a few months for follow-up, but since there is no change in my syrinx I am likely only going to have to discuss my increase in symptoms.

Today has been a rough day for my back. I’m currently laying down in my bed typing this flat on my back trying to minimize the pain in my shoulder blade area. It can be quite excruciating at times and I am just glad that this doesn’t happen every day. Tonight it is affecting my ability to sleep. It’s nearly 10pm and I have tried for a while to fall asleep. My bedtime normally is between 8:30 and 9pm because I have to be up so early for work, lately my bedtime has gotten later due to the pain. Keep up the prayers and positive thoughts regarding my disorder. Some days I can completely tell that the prayers pay off, others I feel like my back my be broken but no matter what, I always look forward to the sunshine of life during the days where pain is minimal. Here’s to the sunshine!