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<blockquote data-quote="witzend" data-source="post: 610647" data-attributes="member: 99"><p>Thank you, SOC. <img src="/community/styles/default/xenforo/smilies/emoticons/hugs.gif" class="smilie" loading="lazy" alt=":hugs:" title="hugs :hugs:" data-shortname=":hugs:" /></p><p></p><p>I have been getting back to my daily activities, and that <em>has helped</em> with the "what if's" of my family situation. You're right that I need to think of it as a "If this, then, and if that then" and get it over with before it smacks me between the eyes. Of course, I can't be <em>too</em> specific because they never stop surprising me with what they do. I mean, who would have thought that my dad would send a letter like that? Long story short, whatever happens it won't be the end of the world or me and I have to figure out what that looks like.</p><p></p><p>For those who are able bodied and might not know, when you're losing your ability to walk and get around you combine things. You don't just bring your coffee cup to the kitchen, you bring it to the kitchen, get out meat to thaw, go to the bathroom, comb your hair, then eventually get back to where you were. Going to the store is the same way. You don't just go to the store. You go to the Grocer, the Pet Food Store, the Dry Cleaners, and the fruit stand.</p><p></p><p>I had one of those days the other day. I had a dentist appointment in town, and husband had ordered something from a grocer in the nearby city and his cell phone battery was not charging anymore. So, 3 stops on one trip, right? <em>Four hours</em> and five stores later I still didn't have the battery. No one sells them, except for "battery stores" and I don't know what they're called here so I can't look it up in my GPS. I'd tried Radio Shack, our mobile provider, Target, Best Buy, and stopped at the grocer and finally found it at Interstate Battery. I was so frustrated and in so much pain I just wanted to cry. By then all I had to do was go home. Cry, or go home? I know better than to drive and cry. You might as well drive drunk. So, I pulled it together and went home. When I'm home there's no reason to cry because the frustration - but not the pain - is gone. </p><p></p><p>So next week I'm going to an MDA support group in the evening. Did you know that the MDA offers free clinics? You're seen once by the Neurologist, then twice a year you're seen by the Neurologist (they just want to track your disease is all) and any specialist that the Neurologist thinks you might want to see. Just one problem. The clinics <em>are not free</em> for me. I have health insurance so they bill my insurance ($570 per doctor) and I have to pay the co-pay. Since it's a specialist it's a $50 co-pay for me at the clinic, and if at the clinic they say "You need PT" (I do) or "You need orthotics" (maybe?) each PT visit or whatever is $50 too. I'm paying out $150 a month right now in medical bills for the hospital stay I had in August. I can't add $50 to that. All I can say to the group is that it would be great if they would pass it along that the clinic is not free to everyone and people are going without because MDA is making a buck off of me to help them. Not to mention that my insurance doesn't allow for twice yearly exams, only the one, which I used up now seeing the Neurologist who wasted my time and co-pay telling me that I have MD, which I have now known for 42 years. He//s bells, I'm on the cover of their patient brochure.</p></blockquote><p></p>
[QUOTE="witzend, post: 610647, member: 99"] Thank you, SOC. :hugs: I have been getting back to my daily activities, and that [I]has helped[/I] with the "what if's" of my family situation. You're right that I need to think of it as a "If this, then, and if that then" and get it over with before it smacks me between the eyes. Of course, I can't be [I]too[/I] specific because they never stop surprising me with what they do. I mean, who would have thought that my dad would send a letter like that? Long story short, whatever happens it won't be the end of the world or me and I have to figure out what that looks like. For those who are able bodied and might not know, when you're losing your ability to walk and get around you combine things. You don't just bring your coffee cup to the kitchen, you bring it to the kitchen, get out meat to thaw, go to the bathroom, comb your hair, then eventually get back to where you were. Going to the store is the same way. You don't just go to the store. You go to the Grocer, the Pet Food Store, the Dry Cleaners, and the fruit stand. I had one of those days the other day. I had a dentist appointment in town, and husband had ordered something from a grocer in the nearby city and his cell phone battery was not charging anymore. So, 3 stops on one trip, right? [I]Four hours[/I] and five stores later I still didn't have the battery. No one sells them, except for "battery stores" and I don't know what they're called here so I can't look it up in my GPS. I'd tried Radio Shack, our mobile provider, Target, Best Buy, and stopped at the grocer and finally found it at Interstate Battery. I was so frustrated and in so much pain I just wanted to cry. By then all I had to do was go home. Cry, or go home? I know better than to drive and cry. You might as well drive drunk. So, I pulled it together and went home. When I'm home there's no reason to cry because the frustration - but not the pain - is gone. So next week I'm going to an MDA support group in the evening. Did you know that the MDA offers free clinics? You're seen once by the Neurologist, then twice a year you're seen by the Neurologist (they just want to track your disease is all) and any specialist that the Neurologist thinks you might want to see. Just one problem. The clinics [I]are not free[/I] for me. I have health insurance so they bill my insurance ($570 per doctor) and I have to pay the co-pay. Since it's a specialist it's a $50 co-pay for me at the clinic, and if at the clinic they say "You need PT" (I do) or "You need orthotics" (maybe?) each PT visit or whatever is $50 too. I'm paying out $150 a month right now in medical bills for the hospital stay I had in August. I can't add $50 to that. All I can say to the group is that it would be great if they would pass it along that the clinic is not free to everyone and people are going without because MDA is making a buck off of me to help them. Not to mention that my insurance doesn't allow for twice yearly exams, only the one, which I used up now seeing the Neurologist who wasted my time and co-pay telling me that I have MD, which I have now known for 42 years. He//s bells, I'm on the cover of their patient brochure. [/QUOTE]
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