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!

My Second MRI

I had my MRI today. This is my second one since being diagnosed in March. I went to the same radiological center so that the same radiologist can read my MRI and give me the most accurate results.

When I went into the office I ended up being in the same dressing room and almost had the same locker to put my clothes in…number five which has now become my most unlucky number. Anyhow, I ended up having my MRI on my cervical, thoracic and lumbar sections. I thought I would be there for three hours like I was last time; however, I was pleasantly surprised when the tech told me that I would not need to have a contrast MRI this time. I was so pleased! That cut out an entire hour of MRI time!

Despite the pleasantries of not having an additional hour of MRI time, I did have some displeasure, too. I did have to lay flat on my back with the stabilizer on my neck and head for an entire hour without a break. I was in agony by the time the test was over! I did have several instances where I twitched and I was afraid I was going to have to sit there for hours to redo imaging, but I only had to redo one of the series. I was glad it only took an hour because I was on the verge of screaming in pain by the end.  After all that, I don’t know what the results are but I will keep you posted as soon as I find out!

My symptoms for the day are quite a bit milder than yesterday. I do have the always present headache, weakness, twitching , foot cramps, back and neck pain and fatigue in my muscles. I am feeling quite weak and dizzy right now and I’m not sure if it is the lack of sleep, the pain from the MRI or the overwhelming fear that my syrinx (cyst) has grown. I will be alright either way, but I am just fearful that surgery is coming and I am not ready to take that step, yet. I’m praying for a miracle that the Syringomyelia is gone in this report…but all signs are pointing to a growth in my syrinx. 

Every Possible Symptom - Yep, I Got 'Em!

I had a pretty terrible few weeks, I have to say. I hate to admit that because I’m trying to be so positive and strong through this entire process but these past few weeks have been a battle for me. Last week I was traveling for work and I was in a lot of pain and had most of my Syringomyelia symptoms. I ended up coming home early on Thursday due to my symptoms.

I began feeling “funny” which is the only way I can describe it to anyone. I felt very strange like every one of my nerve endings were highly sensitive but not painful, just sensitive. Have you ever had restless leg symptoms? That is basically like what my entire body felt like, except “light.” If any of you know me personally I am a six foot woman with a not so tiny build; light is not what I would describe me as being. Nevertheless, I felt strange so I drove home. While speaking to my family and friends at my mom’s business I had an episode of syncope. I’m still not sure what happened but I was quite weak. I am able to predict when these happen within about 5 minutes but once I start feeling “light” or sometimes “heavy” I will sit down and prepare myself. I’m quite lucky I can predict them! I ended up going home because I felt I needed to sleep but I called my doctor once I arrived. He was worried because I never, and I do mean never, call him because I am THAT hard headed. He made me go to the emergency room. There I had a series of tests (bloodwork, EKG, etc.). They didn’t find anything wrong with me but I will be having an MRI done tomorrow to ensure that the syrinx (cyst) has not grown. Yep, I finally caved.

The one thing I found when I went to the ER is that not every doctor is even aware of what syringomyelia is exactly. I had previously begun making business cards to hand to people who were interested in learning about my disorder. I felt like I could just hand them a card with my diagnosis, symptoms and my blog address for more information. Unfortunately I had not finished this card prior to the ER visit. I did, however, complete it once I got back home and was feeling better. I now have them with me in my purse so people who are interested can learn more about my disorder. I’ve shared it below. The logo and the card (except the border) were created and designed by me. 

(Front)

(Back)

I had every single symptom I've EVER had with syringomyelia in the last few weeks including: weakness, neck & back pain, numbness in the arms, hands and feet, twitches (entire body), headaches, migraines, syncope, foot cramps, and many other little idiosyncrasies. 

Thanks for all the prayers for those of you who were aware of my terrible weeks! I pray tomorrow will be a better day and I can share a positive story!