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‎01-09-2015 04:39 PM
If so, how are you doing and how do you cope?
‎01-09-2015 04:49 PM
I have MS. I don't know how long you have had it, or how long ago you were diagnosed. I was diagnosed more than 20 years ago. I have been blind save for light perception and I have been unable to walk due to paralysis below the waist. I have recovered from both with the exception of almost blind in my right eye. I have taken a lot of chemo and maintenance chemo. I have been prayed for and prayed a lot. I have been near suicide and back again.
I cope day to day with the help of the Lord. I do pray for Him to meet my needs, not my luxuries, not my wants but my needs and my cup runneth over. I had a very supportive family (children) and husband who did what he could but he was working out of town. My children, at the time, were all grown and in college, undergraduate, master's and doctorate programs at the time. Away, away, far away.
I laid in bed for hours on end without assistance in getting up and wore Depends. I did without food for long periods of time but my needs were met. I lost a lot of weight but gained it readily on a fresh dosing of methylprednisolone. My syringes and medications were nearby for beta interferon, etc. I had a daily visiting nurse who, most of the time, showed up. She served food that was available for me in the fridge. She did change my Depends if it needed changing. She left me a glass of water and a coke nearby in case of need for taking medicine laid out for me or just thirst.
When I was able to walk, I did my own housework and cooking. I have been through the MS and now its own little gift, trigeminal neuralgia, my latest and greatest priz. I do suffer from pulmonary fibrosis, osteoporosis and pancreatitis, most likely a result of the medications. I keep very busy. I care for my husband who has had strokes and heart attacks. I care for myself and am very active in the community. I try to never let the day go by without doing my daily devotional and I try not to go to sleep without an evening devotional and prayer. It sustains me.
‎01-09-2015 06:36 PM
Thank you very much for your response. I was diagnosed 15 years ago. I am currently r/r with no issues except fatigue and an inability to stand for more than 10 minutes at a time. The standing issue is relatively new. I am told by my doctor that my case is very mild. I count my blessings for this. I want to thank you for your encouragement. You are truly a special person! I will keep you in in mind on my difficult days.
God Bless
‎01-09-2015 06:53 PM
My dear SIL is in the advanced stages. She is such a strong person. She is currently in a nursing home. She is incontinent and immobile. She communicates with a tablet but her hands get weak. SIL is on a lot of meds, has skin issues and complains that many of the other nursing home residents have dementia. She has a never-ending revolving door of aides and nurses to get used to.
I don't know how she copes. Her family is very important to her but they don't live close by, so she gets infrequent visits. I live 350 miles away and have my own issues but I talk/text her nearly every day. She is such a nice person, it's not fair.
‎01-09-2015 08:26 PM
Life can be very unfair. Thank God for people like you!
‎01-09-2015 10:52 PM
I will remember you and pray that you continue to do well. The standing thing can be a bit of an issue but always remember those who are thankful are happier. I do think you fall in that category. Just stay sweet and kind as you are now.
Lacey, I am so sorry to hear about your SIL. However, I met many people like that when I was first diagnosed. It hurt my heart to see so many who were so despondent and had so little encouragement from family members but many families are like the patients, totally unaware as to how to deal with this illness as it seems to strike at such a young age and many doctors offer little hope to the patients for lack of understanding. Do tell your SIL that I will keep her in my heart and prayers. Let her know there are others out here who love her.
‎01-09-2015 11:00 PM
‎01-09-2015 11:03 PM
‎01-09-2015 11:19 PM
‎01-09-2015 11:23 PM
Please know I will hold everyone in my daily prayers and will also continue to pray for a cure, which can put an end to this dreadful painful debilitating disease.
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