Sunday, June 7, 2009

Sorry, I Just Can't Make It Today

Originally Written: June 7, 2009
Vol. 1, Issue 4

Good Day, Friends! 

Today I’m touching on a couple of different topics that surround FMS.


1. Problems maintaining a schedule.

2. People who respond to our illness in cruel and insensitive ways.

We have all encountered people that say horrible insensitive things because they don’t, understand or believe that you have a serious illness. Some of these people may even be in our own family. They probably think “We look normal on the outside so how can we possibly be so sick that we need to be bedridden?” Or, “How can you possibly be unable to work? You say you are in pain, but we can’t see it so how can it be real?”

To us it is very real. Sometimes our pain is so bad we can’t think clearly or even get out of bed. The question these people constantly ask is, “How can we be fine one day and on the verge of hospitalization the next?”

For us it is very simple. We suffer, most often in silence, because it is easier to keep it to ourselves than it is to explain our struggles, pain and loss, just to have someone respond insensitively.

One of my biggest obstacles with FMS and migraines (my other major disabling condition) is not being able to schedule things in advance. I can never be certain that I won’t have to cancel at the last minute because of a flare or a migraine. I know that we all have been in this circumstance and it can be very frustrating. Especially if the person you are canceling on doesn’t understand your situation.

There have been times that I’ve rescheduled appointments more times than I can count. Now, if I cancel on my headache specialist? No problem. Cancel on my pain specialist? Again, there is no problem. It’s to be expected. Neither of my doctors want me to drive during a migraine or while I’m taking medication for breakthrough pain.

My biggest problem is always with the dentist. Dental appointments 9 times out of 10 trigger a bad migraine for me. All that buzzing around in my mouth or even just a routine cleaning sends me home sick. Many times just the anticipation causes enough stress to trigger a migraine, resulting in another rescheduled appointment. Of course they don’t get to see me with my head in the toilet so to them it just a bunch of drama to get out of keeping my appointment.

My last dentist had what I called the appointment Nazi’s. They called over and over and over and over to reschedule. If I had a morning appointment and had to cancel, they said, “Well why don’t you come in this afternoon?” Okay people. Most of us with severe chronic migraines know that you’re pretty much worthless for 24 hours AFTER the headache breaks. At least I am. My triptan makes me feel like I’ve run a marathon and the last thing I feel like doing is getting up, taking a shower and going to have some person dig around in my mouth, just to start the headache back up again.


These young girls just didn’t get it. No matter how many times and ways I tried to forewarn or explain. My last appointment I had to cancel they had the audacity to tell me to either come in or find someone to fill my appointment. I was furious. My husband was also outraged and he came home from work, picked me up, we went into the dentist’s office so they could see just how sick I was. My husband then proceeded to tell them they could go pound sand before they would EVER treat anyone in our family again. They lost four patients that day. The dentist, which I had seen since the age of 12, apologized profusely and said that I could just call on a day where I felt up to it and they would fit me in. I thought that sounded like a great plan. So we headed home, all the while I was struggling to keep the contents of my stomach IN my stomach. I assumed we had reached an agreement, although my husband stood firm that he and the boys would never go back to that clinic again.

A few days later I received a letter in the mail saying that they had the highest standard of care for their patients and because of this they were dropping me as a patient. HUH? What was that suppose to mean? Some poor little appointment clerk probably got a firm talking to and when I didn’t call within 3 days, she decided I could care less about my teeth and that I was not “good enough” for their practice. So, in total, the clinic lost a total of 5 patients in 3 days time due to one appointment clerk’s behavior. The dentist doesn’t get a pass either; after all, he signed the letter.

To this day I regret not responding to that letter. I was so upset that I was afraid I would get into a screaming match that would result in me needing to ask for forgiveness on many levels. So I let it go. I will not mention his name. I firmly believe I would be wrong to do so, as it would violate my Christian principles. The Bible says, “Vengeance is mine, says the Lord.”

We all have to struggle with feeling semi-normal one day, then the next like we are near death. I try not to schedule morning appointments if possible because that tends to be the hardest part of my day; it is for most FMS patients. I don’t make commitments to serve on the board of my drill team; I always make sure there is a backup for any drill position I may ride…which only started this year [2009]. I have learned that I must “come out of the closet” so to speak and tell my friends that I have this disease. Some of them get it, some of them don’t. But that is their problem, not mine. It goes to their character and anyone who chooses to elevate themselves above another people on the basis of health is discriminatory and cruel. I know, those are strong words, even judgmental. God tells us “Judge not lest ye be judged.” But, we can see a person’s actions and if those actions fly in the face of God’s command to love one another, I think a little extra caution is advisable before opening your heart to someone like that.

My friends keep up the fight. Defend your right to be treated like a human being even though you fight this terrible disease. Remember never to give up your dreams, and never, EVER let someone else make you think less of who you are because of Fibromyalgia or any other invisible illness.
Have a blessed week!


Bobbie


© Robynn “Bobbie” Dinse / Bobbie’s World Blogs
Please note that this short story is copyrighted and should not be reprinted in any form without permission from the author
Feel free to link to “Bobbie’s World Blogs"
Thank you!

Tuesday, June 2, 2009

I Have FMS, Now What Do I Do???

Originally Written:  June 2, 2009
Vol. 1, Issue 3

Hello Everybody!

Today I want to take a moment to discuss an issue that affects a lot of people that suffer with FMS and other disabling conditions. Before I get to that, I want to share a little of my story with you.


Prior to my car accident and being diagnosed with FMS, I was working 40 + hours a week and was the major bread winner for my family of 5. My day started at 6:00 AM with taking the kids to the sitter and driving 45 minutes to my job. After working a full day, I would return to pick up my children, drive home, make supper, clean up the dishes, spend some quality time with the boys, bathe them and tuck them into bed. The weekends I did the major house cleaning, yard work, tended to the flowerbeds and washed the car inside and out. 

My oldest boys are one year and one week apart so they played baseball on the same team. I NEVER missed one of their games. Even after all that, I managed to sing in the choir and play a musical instrument during the service once or twice a month. I look back at those days with a lot of joy and happy memories. Although I was tired, it was nothing like what I experience with the FMS. Now that I have this disease, I’ve given up a lot of things I once completed with relative ease.

I went through a long grieving period of the life that was lost to me because of FMS. BUT, that doesn’t mean my life was over, it just had to change and I had to adapt. Not to mention, my disability check is a fraction of what I use to make.
Now, I’m still one of the very blessed few. My husband has a great job and is able to support us with his income alone. He does have some health issues of his own and that frightens me on several levels. 

  • I love him and don’t want to be without him.
  • If I were to lose him, I would lose everything, my home, cars, everything material. 
It can be terrifying at times. We have life insurance, but that would only go so far. So, I try to live each day to the fullest by cherishing every moment; however, when I’m having a severe migraine or a bad flare all these worries really get to me.

What I have learned is that I must trust in God to provide for my daily bread and to take things one step at a time. Some Fibromyalgia patients have more severe cases than others and I feel for those who are suffering or confined to wheelchairs due to their pain. But I have faith that should something happen to my husband, God would provide another way for me to care for myself and my boys.
So, what I want to say to you is this: Don’t give up. You have a future and God will reveal it to you when the time is right. In the meantime take things one day at a time and trust in His plan for you. Continue to work with your doctor until you find the right mix of medication and therapy. Remember, no matter how bad your situation is, the sun will still come up in the morning! Never quit trying and never give in.
Good luck and many blessings to you all!




Bobbie 
© Robynn “Bobbie” Dinse / Bobbie’s World Blogs
Please note that this short story is copyrighted and should not be reprinted in any form without permission from the author
Feel free to link to “Bobbie’s World Blogs"
Thank you!