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.