Recently, I started to lose hope. I thought I was nearing the end of the hope roller coaster ride I had been on for so long now. Hopes up for the next new treatment, hopes down when it didn’t perform miracles, hopes up for the next one, hopes down, and so on. Looking at my situation realistically, I saw that I was worse than I was a year ago, a year ago I was worse than I was 5 years ago, and 5 years ago I was worse than I was when I was diagnosed in 1997. So I finally faced the reality that I was slowly getting worse. Nothing I’d done so far had dramatically made a difference or turned my situation around. Sure, I had had some good days resulting from some efforts I’d made but it wasn’t enough to make a profound difference in my overall condition.
So perhaps I should just stop trying and accept the inevitable. A new doctor confirmed my diagnosis of Primary Progressive MS which is the worst kind. I made an appointment with Wheelchair Services. Despite my sadness and hopelessness, I did, strangely, find some peace with the newfound acceptance.
But one night, as I sobbed with elbows on my knees, face in my hands, my husband said to me, “Dawn, if a sculptor sculpted you right now, it would be entitled ‘Defeat’. When are you going to get mad and just will it away?” Easy for him to say, I thought. But he’s right. Defeat means that the enemy has won. The loss of hope is detrimental to our health. I did still have a spark inside me somewhere that wanted to fight. Now my mind knew that but how do I convince my heart? How do I make that spark a raging fire? I prayed that God would bring hope and strength back into my life.
God has ways of showing us the answer to prayer if we’re open to looking for it. I was overwhelmed this week by images of children in need. I also heard heartbreaking stories of women in the Congo who have gone through unspeakable horrors. There is true suffering in this world that we will never understand, but one thing is for sure…
I. Do. Not. Suffer.
I am going to fight. I am going to pray and do whatever I can to not let this disease defeat me. But if I have to spend some days in a scooter, then so be it. It’s just more comfortable to sit sometimes. And life from two feet lower is still so good.
So, friends and family, please mark my words. Hold me to it. God may hear me complain but I hope you never will.
” Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”
2 Corinthians 12:8-10
Wednesday, April 16, 2008
Friday, March 7, 2008
Fed Up With The Docs
I am diagnosed with Multiple Sclerosis. Obviously, I need to be under a neurologist’s “care.” I stay away from any unnecessary prescriptions and I take good care of myself. I’m not foolish; I take the drugs I absolutely need. I am on a daily MS Therapy, I take a pill from time to time to help my bladder stay relatively normal and I occasionally need to take sleep aids. But, overall, I try to stay away from drugs. I typically won’t take over the counter pain medication if I can manage without it. When I’m in pain (which is often) I turn to natural methods for relief. I do yoga and take hot baths. If I exercise, the pain melts away. If I’m eating a diet of all natural foods, I tend to feel better.
Is it too much to ask to find a doctor who simply respects my philosophy and supports my efforts to stay well?
Here’s why I left my former neurologist who I had been seeing for several years:
When I would come to him with an issue I was concerned about, he would write a prescription. When I refused the prescription, he was done offering any help. If I didn’t take the drugs, then there was nothing further he could do for me. For example, I was concerned that I had lost almost 40 pounds in the last few years and I was underweight and continuing to lose weight. He immediately offered me a prescription for an anti-depressant that had a side effect of weight gain. What?!? Can anyone honestly blame me when I refused?
What about offering an explanation? Is it so beyond him that he can’t even discuss diet and exercise with me? He can’t even encourage me to live without the drugs and celebrate my successes when I go without? I felt as though he was laughing at my attempts. He actually did say to me at one visit, “If you’re looking for a holistic approach, you won’t find it here.” Well, no shit, doc, if I want a holistic approach, I’ll go to a holistic doctor (which I have done multiple times.) Forgive me for wanting to lean in that direction. But am I not the patient, therefore, the customer in this relationship? Is there anything wrong with supporting that approach and trying to keep me positive? Since when did doctors stop working for us?
I’m currently in the process of switching to a new neurologist. I feel like I’m interviewing for a job. I feel as though I have to be approved by him in order to be seen. I couldn’t just make this appointment on my own. I had to be referred by my former neurologist . When the old doctor’s office secretary called me to tell me when my appointment with the new doctor was, she said in her message to me, “The doctor wanted me to pass along a message to you to let you know that he does not use a holistic approach. I repeat, he does NOT use a holistic approach.” One, again I have to say, no shit. This I know! If I want a holistic doctor, I won’t be making an appointment with a traditional neurologist. Two, what was said when she was making this appointment for me? I can only speculate but I don’t feel comfortable with how my “case” was presented when the appointment was made. Why do I feel such animosity? Why do I feel like I’ve done something wrong? Again, I must ask the question, is it too much to ask to find a doctor that cares about my health and beliefs enough to simply respect and support me? Finally, it wasn’t necessary to repeat yourself, lady. I’m not a ding bat; I understood you the first time.
My appointment is set for April 8. I’m going to do my best to assume there is no animosity and perhaps I found a good doctor this time. I’ll tell him about myself and what my approach is and I’ll hope that this one will respect me and use that information to help me manage the MS whether the solution is traditional or considered alternative. Is that too much to ask? I think that’s the best we can expect from doctors today and that’s all I’m hoping for.
Is it too much to ask to find a doctor who simply respects my philosophy and supports my efforts to stay well?
Here’s why I left my former neurologist who I had been seeing for several years:
When I would come to him with an issue I was concerned about, he would write a prescription. When I refused the prescription, he was done offering any help. If I didn’t take the drugs, then there was nothing further he could do for me. For example, I was concerned that I had lost almost 40 pounds in the last few years and I was underweight and continuing to lose weight. He immediately offered me a prescription for an anti-depressant that had a side effect of weight gain. What?!? Can anyone honestly blame me when I refused?
What about offering an explanation? Is it so beyond him that he can’t even discuss diet and exercise with me? He can’t even encourage me to live without the drugs and celebrate my successes when I go without? I felt as though he was laughing at my attempts. He actually did say to me at one visit, “If you’re looking for a holistic approach, you won’t find it here.” Well, no shit, doc, if I want a holistic approach, I’ll go to a holistic doctor (which I have done multiple times.) Forgive me for wanting to lean in that direction. But am I not the patient, therefore, the customer in this relationship? Is there anything wrong with supporting that approach and trying to keep me positive? Since when did doctors stop working for us?
I’m currently in the process of switching to a new neurologist. I feel like I’m interviewing for a job. I feel as though I have to be approved by him in order to be seen. I couldn’t just make this appointment on my own. I had to be referred by my former neurologist . When the old doctor’s office secretary called me to tell me when my appointment with the new doctor was, she said in her message to me, “The doctor wanted me to pass along a message to you to let you know that he does not use a holistic approach. I repeat, he does NOT use a holistic approach.” One, again I have to say, no shit. This I know! If I want a holistic doctor, I won’t be making an appointment with a traditional neurologist. Two, what was said when she was making this appointment for me? I can only speculate but I don’t feel comfortable with how my “case” was presented when the appointment was made. Why do I feel such animosity? Why do I feel like I’ve done something wrong? Again, I must ask the question, is it too much to ask to find a doctor that cares about my health and beliefs enough to simply respect and support me? Finally, it wasn’t necessary to repeat yourself, lady. I’m not a ding bat; I understood you the first time.
My appointment is set for April 8. I’m going to do my best to assume there is no animosity and perhaps I found a good doctor this time. I’ll tell him about myself and what my approach is and I’ll hope that this one will respect me and use that information to help me manage the MS whether the solution is traditional or considered alternative. Is that too much to ask? I think that’s the best we can expect from doctors today and that’s all I’m hoping for.
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