Living on the Edge is Taking A Toll
I think it was about 4 years ago that I got lost in a VERY familiar parking lot , left my phone at my doctor's office (something I NEVER do), and made my way home to see my husband standing in the garage after I completed singing one last song after a great day driving my car with the top down. At that point my odd behavior was just brushed off as menopause and the fact that I had never really fit into the mold of "homemaker" or "stay at home mom." I was always a little weird. Soon , I would become a LOT weird even in my very OWN lenient opinion.
I know that I won't recall All the strange things that have happened over the past years but I will try . I started wetting the bed , I had to have surgery to remove a gastric band because I could get nothing to stay down but sips of water, a gastroenterologist grabbed me during a visit to the ER and wanted to hospitalize me for a severe"bladder infection" that I did not even feel, I began losing my memory ( short term), I tested it every day by going to the same Starbucks every day and giving the barista a large tip if she could tell me whether or not I was there the day before or not as I struggled every day to remember her name. Oh, and I started to think I was crazy.i bet the kind folks at Starbucks thought I was !
Later on I began having fecal incontinence, lost my ability to walk without excruciating pain, then my whole body began to ache continuously, I lost "friends" because they said I was slurring my voice and must be abusing drugs, and later on I had to drop carpool because I was so fatigued that I just couldn't do it. Luckily a kind woman would take care of getting my child to school because the pain and anxiety were so bad that I had to take some serious medications. By this time I had finally remembered to mention to my doctor that I might need a head MRI to go with my prescribed trunk MRI. My MRI showed 9 lesions on my brain.
Life got busy and my husband had to take a job in another state. My daughter was accepted into a wonderful boarding school for the arts, and I went with my husband to the new job. That was three years ago. All the physical symptoms continue . I tried to retrain my memory and it is much better. I tried to get my family to support me in the research that I had done about my symptoms . I told my doctor what I suspected..."Multiple Sclerosis." He gave me 6 months to break it to my family and see a neurologist.
I have seen two neurologists. One shrugged me off. The other said he could treat my pain with epidurals. Neither were helpful at all and to make matters worse ; my husband works constantly and can't see my pain or fatigue so it does not exist. He tells my two daughters that I am okay and just being a drama queen. I am treated like scum under his feet quite often and my daughters believe that since I don't have a pice of paper saying " your illness is MS" I am told by my oldest that I am the girl who cried wolf. My youngest just told me I had best get in bed so that I will be able to move things in the morning. I haven't even had a bath in a week! She has no clue how much energy it takes and ow wiped out I get.
My husband worries about his heart and his mother so I asked him to go back to home office so the stress of working long hours will not kill him. Sometimes the jabs cut straight to my heart. I feel thankful that my husband brought me food and drink during this time. But I am honestly very tired of the denial and disrespect. I REALLY want to go home so that I can see a doctor in a town that I know. I am going to bed now and I pray that God will help them come to their senses.
The way they are treating me at this awful time in my life disgusts me. I WiLL take a shower tomorrow! I don't care if it depletes me for the entire day! I have a cold and it will be refreshing. That is something my family takes for granted along with me.
Thank you for listening to me gripe tonight
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** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
I know that I won't recall All the strange things that have happened over the past years but I will try . I started wetting the bed , I had to have surgery to remove a gastric band because I could get nothing to stay down but sips of water, a gastroenterologist grabbed me during a visit to the ER and wanted to hospitalize me for a severe"bladder infection" that I did not even feel, I began losing my memory ( short term), I tested it every day by going to the same Starbucks every day and giving the barista a large tip if she could tell me whether or not I was there the day before or not as I struggled every day to remember her name. Oh, and I started to think I was crazy.i bet the kind folks at Starbucks thought I was !
Later on I began having fecal incontinence, lost my ability to walk without excruciating pain, then my whole body began to ache continuously, I lost "friends" because they said I was slurring my voice and must be abusing drugs, and later on I had to drop carpool because I was so fatigued that I just couldn't do it. Luckily a kind woman would take care of getting my child to school because the pain and anxiety were so bad that I had to take some serious medications. By this time I had finally remembered to mention to my doctor that I might need a head MRI to go with my prescribed trunk MRI. My MRI showed 9 lesions on my brain.
Life got busy and my husband had to take a job in another state. My daughter was accepted into a wonderful boarding school for the arts, and I went with my husband to the new job. That was three years ago. All the physical symptoms continue . I tried to retrain my memory and it is much better. I tried to get my family to support me in the research that I had done about my symptoms . I told my doctor what I suspected..."Multiple Sclerosis." He gave me 6 months to break it to my family and see a neurologist.
I have seen two neurologists. One shrugged me off. The other said he could treat my pain with epidurals. Neither were helpful at all and to make matters worse ; my husband works constantly and can't see my pain or fatigue so it does not exist. He tells my two daughters that I am okay and just being a drama queen. I am treated like scum under his feet quite often and my daughters believe that since I don't have a pice of paper saying " your illness is MS" I am told by my oldest that I am the girl who cried wolf. My youngest just told me I had best get in bed so that I will be able to move things in the morning. I haven't even had a bath in a week! She has no clue how much energy it takes and ow wiped out I get.
My husband worries about his heart and his mother so I asked him to go back to home office so the stress of working long hours will not kill him. Sometimes the jabs cut straight to my heart. I feel thankful that my husband brought me food and drink during this time. But I am honestly very tired of the denial and disrespect. I REALLY want to go home so that I can see a doctor in a town that I know. I am going to bed now and I pray that God will help them come to their senses.
The way they are treating me at this awful time in my life disgusts me. I WiLL take a shower tomorrow! I don't care if it depletes me for the entire day! I have a cold and it will be refreshing. That is something my family takes for granted along with me.
Thank you for listening to me gripe tonight
.** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
. You'll find lots of support here. Keep your head up!
I know that if you can live with MS you are strong individuals!
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