Golf For a Cure

I’m not sure how many people are aware that my grandfather played in the PGA but he did and was one of my heroes. He always told me that I could do anything that I put my mind to and I don’t know why, but I believed him. Golf was something that came almost naturally to him and it was his passion. He was a very persistent and determined man and I admired him and loved him dearly. I remember always having random golf conversations about golfers from the past like his colleagues from many tournaments. I remember asking one day about a golfer named Bobby Jones. My grandfather never played with him but appeared to admire him, too. I bring up this story because Bobby Jones was also afflicted with Syringomyelia.

Bobby Jones, although undoubtedly going through so much pain still played golf with a spirit that many could only dream of doing. He persisted through this disorder with grace and he didn’t give up on his dreams. Mr. Jones is the only player in history to this day to have ever won a grand slam. He accomplished this in 1930. Can you imagine going through excruciating pain in your back and swinging a golf club and walking for four straight days in a golf tournament? I am in awe of this man and will always hold a great respect for him because of this determination. Bobby Jones died in 1971 due to his Syringomyelia.

There is a golf tournament honoring Bobby Jones and his SM affliction that all proceeds go to Syringomyelia research. The 33rd annual Bobby Jones Open will be played this year in Walnut Creek, California June 13-15, 2011. The only participants for this golf tournament are people named Robert, Bob, or Bobby Jones. The organization has now given around $250,000 to the research of Syringomyelia. I am not a Bobby, but I am afflicted with the disorder and I pray that this golf tournament will prove to be a great success this year and will give even more money to SM research.

One day, I will have a golf tournament so that I can provide support for those people who are diagnosed with this disorder. It’s a dream to be able to give to an organization that might be discovering the cure to what I have been diagnosed with. I think it is only appropriate to have a golf tournament because my grandfather’s love of golf led me to be intrigued by Bobby Jones. The fact that Bobby Jones and I have been both diagnosed with SM makes this tournament even more appropriate. I hope that you all participate whenever I am able to have this golf tournament.

To learn more about Bobby Jones please visit: http://en.wikipedia.org/wiki/Bobby_Jones_(golfer)

To learn more about the Bobby Jones Open please visit: http://bobbyjonesopen.com/

Freaky Flutters

I felt surprisingly good this last week for the majority of the days. I was impressed by the lack of migraines during the work weeks and the energy I felt. There were still the remnants of pain in my neck and my back but the headaches subsided for some reason. Hey I wasn’t complaining! There were a few days where the back pain wasn’t the best feeling in the world but it was manageable, which I was also very grateful for this past week or so.

Today is not the most pleasant day with my SM but I know, like the weeks past, I will get through it. I have a migraine today, or at least the beginning stages of one. My neck feels very stiff and when I move it the pain just resonates. I also have my sharp pain today in my back that spreads from my shoulder to the bottom of my right shoulder blade. When I move my back I feel a big painful pinch in my shoulder blade. Needless to say I am trying to lay flat as much as I can today.

I have this fluttering feeling once in a while and it’s the most bizarre thing I have felt since I was pregnant with my kiddos. If you’ve ever been pregnant you probably remember the little flutters before the baby actually starts kicking. It’s a very distinct feeling that you can sometimes feel from outside the belly on the skin. With my flutters I have them all over my body. I do actually have some in my tummy which is a VERY strange feeling for someone who hasn’t been pregnant in almost four years now. The strangest location is on my calf, though. One night I was laying and I felt the flutter and finally made my mom feel what I was talking about. She now realizes what that feels like and agrees that it is very strange. The good news about this is that it is not painful it just twitches. My eye has been twitching for the last week or so which is extremely annoying. I’m not sure that is related, but it seems that it would be the case.

Sorry for the delay in posts. Sometimes it’s difficult to find the time to post, especially when I am feeling better because there are a lot of things that I want to do when the pain isn’t as bad as it is normally. Thank you for reading my super long post and I will try to post more frequently for those of you who are interested in learning about my journey.

What a "Weak"

This Tuesday I had my most fearful experience to date. I was talking with my parents and saying goodnight to my dad before he left for the evening and I felt a rush come over me. I had been standing for several minutes talking to them and then WHAM, I lost consciousness. I had not done this yet and I was really scared. I believe a lot of it is that I didn’t eat that evening. I did have milk and a large lunch, though. I am not sure what happened but I need to talk to my doctor about it anyhow. Very strange indeed!

Wednesday I felt so weak like I wasn’t even able to walk without wanting to crumple to the floor. I had a mandatory seminar or I would have stayed home. I sat through the seminar and got a lot out of it; however, I was in agony with weakness and fatigue and my back felt like fire. I can safely say that Wednesday was a pretty terrible day for me all around with the pain.

During the day today, I felt like a million bucks in comparison to the way I have been feeling. I just had so much energy in the day and I was so happy to finally have that for a change. I couldn’t believe it! When I got in the car to come home I did have some signs that my evening wasn’t going to be as pleasant, though. My back began to twinge, my head began to feel a little bit worse (my headache has still not totally gone away for 5 months now), and my feet began cramping. When I got to the house my feet began cramping pretty bad and my back began to feel worse. I am so sad that I started feeling bad at home but I am SO very grateful to have one work day that I felt decent. Praise God for that!

A symptom I keep forgetting to mention to you all is my fatigue and weakness. I mentioned it earlier in this blog entry when I was weak after the fainting episode but I don’t believe I’ve mentioned it before then. It’s been my most annoying symptom so far. I can’t even wash my hair without taking a break or two because my arms start burning because of the weakness and fatigue. I’ve stopped straightening my hair like I used to because I cannot withstand the time it takes to fix my hair. My life now consists of having my hair in a ponytail or a bun. When I fix my hair, even with a ponytail or bun, I have to take a break, too. Can you imagine how frustrating that is for me? I love my hair and how long it is…but it’s really painful to style right now. I’m hopeful that one day I will be able to have my long beautiful hair again. One day at a time, one symptom at a time…

What a Pain

What a way to begin my day, with a migraine. It really frustrates me that I now have this extreme pain every few days that the doctors cannot figure out how to relieve. I have no medication that can keep this pain from happening and the sensitivity is becoming more and more intense with each new migraine. I had to miss work today, which if you know me is very unlike me. I just knew driving to work was going to be very painful with the sun rising and the natural light shining in my eyes. I love sunshine; I even have the word tattooed on my foot. With this disorder, though, sunshine can be my worst enemy. That is very frustrating.

Luckily the increase in some of my meds has helped some of my other symptoms like the burning pain in the back. It’s still a warm sensation but hasn’t increased, so that’s definitely worth celebrating. The neurological meds have kept my hands, arms and legs from being numb for almost a month now, that is the best news so far! The pain meds help keep my stabbing pain at bay and the pain level drops from an 8 to a 4 which is a major victory. The only issues that have not yet been assisted are the excruciating foot spasms and the migraines. Those, unfortunately, have always been the worst pain of all. I truly hope that we can find something to help me with those two conditions.

My pain management doctor wants me to see a neurologist. I am already under the care of a neurosurgeon and he believes that a neurologist will help. I believe that is a good plan. If anyone knows a good doctor in the Austin area, please let me know because I really need all the help I can get!

I want to end today’s entry by sending my thanks to everyone who has been keeping me in their thoughts and prayers. This has been quite an adventure for me and with it being a lifetime illness; it’s something that I hope everyone continues to keep in their thoughts. Thanks again for being great friends and keeping up with my disorder. Your support means so much more than you know. If you want to share my story with anyone you are welcome to do so. The more people that know about Syringomyelia, the greater chance we have for finding answers on how to cure it. Thanks again!

Change Brings Hope?

It’s been a while since I updated this and I apologize. It has been a very hectic week for me and I believe all of the stress that came from this week has really taken a toll on my body. Quite unfortunate, but I’ll get through it!

I went to the pain management doctor this Wednesday and he changed my medications up a bit. He took me off one medication and replaced it with another for my foot, leg and now hip spasms. Yes, I actually got a Charlie horse in my hip…can you believe that? I feel like each week I gain a new bizarre symptom that there is no explanation for and it’s very perplexing. This week I have had several occasions of foot cramps but Tuesday was the worst. That was the night where my hip had the spasm. I’m still very unclear how it all began but I did realize that hip cramps are much stranger than the other spasms. I truly hope this new medication does the trick.

My other medications have been increased as well. I have also been given more neurological meds to try to tame the burning pain and a change in my OCD meds to also try to offset the pain in the back with Cymbalta. I have taken this medication to try to help the OCD many times in the past and it’s not the most beneficial drug in the world for me but if it can help my pain I’ll try just about anything these days!

I had a migraine for two of the days since the last post which I guess is an improvement right? Today I just have a little bit worse of my constant (now 5 month) headache. My neck and back are hurting and I am having some serious twitching of the entire body, especially when I relax to go to sleep. I think I want to have a video made so I can watch the twitches occur. I’m sure it happens a lot and they wake me in the night when they are strong enough. I can’t remember when I slept through a night without a twitch, spasm, or sharp shooting pain. I really miss sleep.

I guess you can all tell by the tone of my blog today that this has been a very rough week for me. I can only hope that it gets better. I’ve tried very hard to talk about this in positive terms but it’s very difficult when I realize this is a lifelong issue that I really need to learn to cope with. Coping is something that I am generally good at doing and adapting is another strong suit of mine; however, for some reason when it comes to my SM I’m having a harder time adapting to the fact that I shouldn’t be lifting, straining or doing anything to hurt my condition. It will get better, it has to…right?

Source of Support

I woke up without a migraine today!! VICTORY! Although it was a minor victory because my back was still hurting, I was pretty psyched! I had a great day yesterday despite all of the pain and discomfort because I finally got a chance to talk to my dear friend who also has Syringomyelia (SM). He has suffered with this for much longer than I have and had surgery in the nineties to help with a condition that sometimes coexists with SM which is Chiari Malformation (CM). I do not have CM but he and I both have SM. It was wonderful to be able to speak to someone about the symptoms, treatments and frustrations that I have with this bizarre disorder. I realized yesterday that I really need that support. It is very difficult to talk with someone who has not had to deal with this type of pain or strange symptoms that go along with the SM diagnosis. I appreciate his support more than he knows, I believe. So if you’re reading this, THANK YOU!

We discussed something that we both have thought about doing which is going to the American Syringomyelia & Chiari Alliance Project’s (ASAP) annual conference. Last year they had it in Austin, Texas which just happens to be extremely close to where I live; however, I was not diagnosed with this until after the conference took place. The conference changes locations yearly to give an opportunity for others around the country to attend. This year it is in Colorado. That is so far and I really wanted to go but it will cost me a lot of money to attend…money I don’t have thanks to the doctors, ironic isn’t it? At this conference I could have met doctors in this field who are specialized in treating my diagnosis and the people who have also been diagnosed with SM or CM. It’s really disappointing that I will not be able to gain additional resources with this diagnosis. I will just have to save the money for next year. I just hope my symptoms do not continue to increase or I may have to have the surgery before I have a chance to ask questions to other professionals in this field or those people who have had similar symptoms that also had the treatment I will be receiving. I will keep being positive because that’s what is helping me get through the days like yesterday.

For more information regarding the American Syringomyelia & Chiari Alliance Project’s annual conference be sure to visit: http://www.asap.org/index.php/get-involved/conference/. You can also use this website to learn more about my disorder.

No Pain No Gain?

The migraine has returned. I was feeling so hopeful that these things were going to be minimized by all of the medications, I was quite wrong. I ended up staying home today from work because the back pain wasn’t very manageable and the migraine was also present.

I have another appointment with the pain people next week and I am pretty scared about that. The last time I went they gave me the red wasp injections. I’m scared to say the least. I also found out that my neurosurgeon used to work under the doctor who my cousin recommended. That’s pretty incredible and proves that the world is very small. It does put a bit of a question in my head if I need to drive all that way to receive the same prognosis. I also question whether the pain management and PT is all that I can do to manage this diagnosis.

That being said, I haven’t even begun the PT process. I haven’t had many days where I feel like I can manage enough to stretch my body that way. I’m already in so much pain, how can PT make me feel better when stretching and moving is what actually hurts me? It seems so contradictory to me. I guess in reading all of the accounts from people who have the same diagnosis as me I have yet to find one where PT has made a huge difference. I guess I’ll just have to keep searching for the positive in this situation.

I Think I Can, I Think I Can...But I Shouldn't

I woke up this morning with severe pain in my back and neck. I had a feeling this would happen today because I went to a home store yesterday to shop for new shelves…and stupidly, I lifted them by myself because there was no one around to help me. I now realize that I have these “denial days” where I think I can still do everything that I used to without consequences. I realize that I “have no limitations” according to my neurologist; however, if I choose to pick up anything over 20 pounds I end up paying for it within 12 hours.

 If I do overdo it I have to take my pain medication and it is pretty frustrating for me to have to take those. I’ve always disliked pain medication. I have had many surgeries in my life and a lot of painful situations due to my clumsiness but I avoid pain medication at all costs. I had two knee surgeries when I was in high school and I believe I may have taken a total of five pain pills between those two surgeries. I have had a tumor on my thyroid and had a hemithyroidectomy (removal of half of my thyroid) when I was 23 and that pain was excruciating. Within a week and a half I was off pain medication because I respect it and fear becoming addicted to it. I usually only take ibuprofen or pain relievers of the like and for the most part these work for all of my ailments. This diagnosis has completely shattered that process for me. Pain medication barely takes the edge off now, so ibuprofen is quite laughable at this point. I just want the pain to cease so that I don’t have to rely on pain medication any longer.

I want to be able to be independent again and not have to rely on anyone to lift my son or anything I need to lift. It’s so disconcerting to realize that things I once did effortlessly I can no longer do without hurting or assistance. I also realized that being a single mother with two children and a having debilitating disorder really takes a toll on me emotionally. I want to be able to give my children everything they want in life within reason and I cannot even go on an amusement park ride with them (that is one of the many things I should not do with my disorder). I guess that puts the Disney trip off until they are old enough to ride the rides without an adult, poor kiddos.

I am trying to remain on the positive side, though. It’s been really difficult on some days but usually when someone asks me about my diagnosis I tell them about it with a positive perspective. You might even see me smile when I talk about it because I want to make sure that people don’t feel sorry for me. I want to believe that I will be fine and if I talk negatively about it, people will come up to me with the “pity face” that I have grown to really avoid these days. I do appreciate, though, the concerned face that my friends and family give me. They know that I am hurting and they ask me how I am doing, but they don’t feel sorry for me…or at least they don’t say that they do. I know I’ll get through this and that it could always be worse.