tag:blogger.com,1999:blog-4065602349484224616.post1599415696400033015..comments2024-03-28T04:46:23.081-07:00Comments on Caravan Sonnet: the Lyme Diaries: Financial Tips & ResourcesCaravan Sonnethttp://www.blogger.com/profile/17225941007248198346noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-4065602349484224616.post-22640282830089073212015-01-22T04:30:49.498-08:002015-01-22T04:30:49.498-08:00Sarah,
Please forgive me for the delay in my resp...Sarah, <br />Please forgive me for the delay in my response. Your blog comment TRULY touched my heart and also was such a wonderful encouragement. I have enjoyed connecting more with you this past week through social media!! You are AMAZING lady! I have been reading through your blog and just following your story and I stand in AWE of your courage and bravery in your fight. You are my newest hero!!<br /><br />I couldn't agree with you more about how humbling it is to rely on those closest to us for financial (and emotional support). I am so incredibly grateful to my parents and my sister and some close friends who have truly stepped into the wreckage that disease would like to make and have helped me in so many ways. TRULY this has been some of the most important resources that they could give me- their unconditional love. <br /><br />I had to smile when you mentioned make up! Oh my goodness there are days where I completely miss putting that on! You might laugh but when I went on the cruise last year I knew that I would want to wear some make up. One of my friends sent me money so that I could go buy make up (as I hadn't purchased any in over two years) and so I went to buy some and realized that I didn't even remember how to properly apply it. I went to the make up counter and asked for some help and instructions. The woman looked at me like I was crazy because I was asking for help. I was embarrassed and broke down crying, blubbering about being ill. She then was OVER attentive ... hahaha what a MESS! I can laugh about it now but at the time I was reminded about how much had changed due to illness. It was definitely humbling. <br /><br />I am SO glad that the tip for the medicine on only asking for some was helpful!! That was SUCH a huge help to me also! I am so sensitive to medication and dealing with Mast Cell Disease I never know if something will give me a severe reaction. I had bottles upon bottles upon bottles stacking up and was so frustrated with the amount of money that I had wasted. I learned this from another patient. The first time that I asked the pharmacist they were very cautious and didn't want to do it but when I insisted they admitted that legally it was my right but they don't like breaking up the medicine into different quantity sizes! Since then I always insist!! :) It is the only way that I can afford to take medicine and also try different medications. (There are obviously some medications- powder form- where this doesn't work but everything else does! :))<br /><br />Thank you so much for encouraging my little heart! I am so glad that we have connected and look forward to connecting with you more!!<br />Thank you again Sarah!!!<br />Blessings, <br />Rebecca :)Caravan Sonnethttps://www.blogger.com/profile/17225941007248198346noreply@blogger.comtag:blogger.com,1999:blog-4065602349484224616.post-32974992565848513272015-01-15T20:50:35.684-08:002015-01-15T20:50:35.684-08:00I don't suffer from Lymes but this is an absol...I don't suffer from Lymes but this is an absolutely wonderful post. I developed Dystonia when I was 22/23, and the costs are extremely high. No one ever thinks about how expensive being sick is. I've never seen any numbers on the cost of treating Dystonia, but between lost wages, copays, therapies that aren't covered by insurance, and other things that I need to stay comfortable, I can't even fathom what it will end up costing over my lifetime.<br />You are right that your first tip is the hardest to come to terms with. I finally left my job 4 years after my diagnosis and having to switch my thoughts from "wants" to "needs" has been difficult. But, I don't need the suits, a regularly trimmed bob with highlights (oh, how I can't wait to have a nice ponytail again), or even the other costs associated with commuting and the occasional lunch out.<br />However, it is truly humbling to be fully dependent on my husband and parents for financial (and emotional support). I think I've learned a lot about what it really means to live simply and gratefully. Although, I do miss putting on make up! I just don't need it/can't even really put it on most days.<br />Like you, I am extremely sensitive to medications. It never occurred to me to try to purchase only a week's worth, instead of the entire month. I have an entire closet full of pills that I don't even remember what they're for! I would try them, develop some weird muscle spasms or involuntary movement (most of my problems are neurological) and then stop taking them.<br />Your tips are so helpful and the first part about giving up the girly extras, as hard as it is, made me feel understood. I've never really spoken to or read anyone else's experiences with that. Like, my husband and I cancelled all of the unnecessary services (like satellite tv, I switched from buying books and using Audible to relying on my husband to pick up books that I reserved at the library, etc.). But, he's a guy, so he didn't quite get how sad it made me. He was also able to find a better paying job when I left mine, but that meant upgrading his entire wardrobe. (It isn't fair how much cheaper their clothes are and how their sizing is so consistent!).<br />Anyway, thank you for posting this! It's a blessing and a resource for more than just Lymes patients!Sarah @ Back to Carolinahttps://www.blogger.com/profile/16872923498201700713noreply@blogger.comtag:blogger.com,1999:blog-4065602349484224616.post-9300584999077756842015-01-15T17:16:05.167-08:002015-01-15T17:16:05.167-08:00Thank you sweet friend!! To you too!! Sending gent...Thank you sweet friend!! To you too!! Sending gentle hugs and lots of prayers to you!!<br />Blessings, <br />Rebecca :)Caravan Sonnethttps://www.blogger.com/profile/17225941007248198346noreply@blogger.comtag:blogger.com,1999:blog-4065602349484224616.post-72124909679748411142015-01-15T10:30:18.758-08:002015-01-15T10:30:18.758-08:00Hugs to you, sweetie! Hugs to you, sweetie! Jessy @ The Artsy Cajunhttps://www.blogger.com/profile/03603117661620885588noreply@blogger.com