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Post by SueDonym on Jun 27, 2009 22:48:24 GMT -5
Howdy, y'all.... for those who may be new, I was an active member at SS, somewhat here, but took a hiatus for a while. When I found myself deep in squalor, it was purely due to depression and despondency mostly from my mother's passing. I often read accounts there and here about people with children and/or disabilities or chronic medical conditions, and marveled at their determination, as it was just me here... (then) under 40 and perfectly healthy, and yet it was still so hard to stay motivated. It has been a rough year for me. I live in Texas City and worked in Galveston, both of which took the brunt of Hurricane Ike's fury. My house was fine, but I lost my job due to the storm. I found a new job just in time for my severance pay to run out, but it was an hour's drive away, and it just felt like I had so much less time and energy. My habits really started to slip. Then, I developed a chronic eye condition called blepharitis. For 3 months, I was in so much discomfort that I started the day crying on my way to work, watched the clock all day, and counted the minutes until I could come home and close my eyes. I had 4 prescriptions in 4 months, with none providing relief. I finally found one that helps (Azasite), but it is clinical trials for this condition, and not approved for maintenance, so my insurance won't allow me to pay a monthly copay. Instead I have to pay a copay for each vial, which only lasts about a week, at $50 a pop. At least 5 out of 7 days are minimally painful now, as opposed to most being so. It hasn't been fully tested for long term use, and I am hoping the trials go well, because it's the only thing that has made my days bearable. However, while feeling so crappy, I had no interest in keeping up the house. I didn't get dug-in like before, but it has been three months since I have used a clean dish or cup (plastic ware). I haven't swept or mopped, and I have 8 kitties, so hair is starting to turn into the kitty equivalent of tumbleweeds. Seriously. Now, this next item may sound like a negative, but it has spin.... I also once again have lost my job. The job I got after the Ike layoff just laid off due to the economy. I am not sad about it, because I didn't love it and love my team the way I did my previous job. In fact, I have a glimmer of hope that it could be good timing for getting my old job back since the state finally funded repairing the hospital. But the real spin is that now that my eyes are (at least for now) feeling mostly better, and I suddenly find I have time on my hands, I have started taking care of home-business again. And that led me to start thinking about y'all more again. I spent a couple days wallowing. But then today I got up early, took my eye drops, made breakfast, washed a few dishes (one bite of the elephant in the sink), topped off the trash bag with spoiled food from the fridge and took it to the curb, cleaned the litter boxes, and did 2 loads of laundry. Tomorrow I plan to get the front room to "not afraid to answer the door" status. So, to all of you who have struggled with not only squalor but additional weights whether they were medical issues, busy families, finance, etc... my hat is off to you all for continuing to push forward. You are the ones I thought about and that gave me the imaginary kick in the butt to get moving. You, some of the same ones who sat on my shoulder when I went to my first appointment with my therapist a few years ago, are the ones I thought about wanting to live up to. So maybe it has been a while since I have been around. Maybe too long. But what it says to me is that no matter what, the things I have learned from you all will always be with me. Even when I am not here myself, you're here *pointing at my head*  |
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Post by Meme on Jun 27, 2009 23:38:41 GMT -5
I am glad that you came back to spend some time with us- one pitch at a time and before you know it things will be spic and span. hugs
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Post by Little_Ninja on Jun 27, 2009 23:49:21 GMT -5
Welcome back, Suedy! You've been missed! You and Iguanamamma seem to be in the same vicinity and line of work. I hope you two can connect and keep in contact with each other. I've never heard of an affliction such as blepharitis, but it must be so stressful for you to have to deal with it. (Can any eye surgery relieve the problem?) I've always remembered how you made great strides in overcoming your squalor and getting repairs on your house after dealing with your mother's death. I'm still grieving for my parents (both died in 2006) and the three fur babies I've lost since 2004. It's tough. It's sad. But I always try to look to them for strength in overcoming my current life's obstacles. Lately, I've REALLY been praying and asking for support from my loved ones who have passed on. You've been an inspiration to me and I hope you'll continue to post regularly. You've been missed!   Little_Ninja |
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Post by threeg on Jun 28, 2009 3:10:44 GMT -5
We all missed you Suedy. I'm glad that the medicine is helping your eyes. I hope they approve it soon so you can get it for less money. $50.00 a pop, especially when you are unemployed, is a lot. Whew!  3g |
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Post by Arid on Jun 28, 2009 15:11:04 GMT -5
Sue: Are your doctors having you do all the standard things to treat the blepharitis? Are you cleaning your eyelashes twice daily with baby shampoo, and are you putting hot compresses (i.e. clean washcloths) on your eyes twice a day or more? Blepharitis is pretty common among folks who suffer from dry eye conditions, such as Sjogren's Syndrome. You can find more information at www.sjogrens.org Arid |
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Post by SueDonym on Jun 28, 2009 21:51:17 GMT -5
I have tried the eye washes, eyelid massages, warm compresses, baby shampoo, tea tree oil shampoo, dandruff shampoo, castor oil, antibiotic ointment, antibiotic drops, antibiotic drops with steroids, doxycycline (one dosage, and then a higher dosage), tea tree oil treatments, dial antibacterial soap, TheraTears, Soothe-XP, Refresh Endura, and I am sure I am leaving something out.
No matter what else I have been doing at the time, I have kept up the eyelid washes, the compresses and the dandruff shampoo, and I am back on the doxy too
Of all of these, nothing has made a difference, except that maybe the doxycycline helped a little, but I couldn't tell until I quit it for a week and it seemed worse. The AzaSite helped IMMEDIATELY. The DuraSite substance that serves as the carrier for the antibiotic seemed to relieve the discomfort within 30 minutes, and then the antibiotic made a difference by the next morning. Unfortunately, I tried stopping after the first bottle ran out, and it was back within 5 days. Right now, I am trying just using the drops when I have irritation. I am only 2 days in so far, so we'll see if this is enough to control it or not soon enough.
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Post by Arid on Jun 29, 2009 2:51:04 GMT -5
Back in the pre-AzaSite days, the ophthalmologists who spoke at our Sjogren's Syndrome meetings said that it took an entire year of treatment to clear up blepharitis. This was when the tetracyclines were the drugs of choice (your doxycycline would fall in this category).
Arid
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Post by 60isolderthanithot on Jun 30, 2009 9:34:23 GMT -5
With a new administration in power, perhaps it's time to review a LOT of the corporate-centered legislation that allows insurance companies to make medical decisions without accountability. It seems to me the economic meltdown is conclusive in one regard: we shouldn't rely on industries to police themselves. That doesn't work.
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Post by tinasabrina on Jul 1, 2009 1:42:30 GMT -5
Hello Sue  So sorry to hear about the blepharitis. It sounds truly awful. I had to laugh about the cat hair eventually turning into tumble weeds.  Same way at my house; don't feel bad! |
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Post by SueDonym on Jul 1, 2009 14:15:24 GMT -5
I have an appt with a new ophthalmologist next Tuesday. I liked my previous one, but his office was poorly run. It was a total madhouse, and next to impossible to get a call back. This new one comes highly recommended by a friend and he specializes in external diseases.
The doxycycline antibiotic is (from what I have read) the most common long-term antibiotic prescribed for this. The problem is that it makes me nauseous if I don't eat enough with it, but I can't take it with meals, because most of my meals include dairy since I eat vegetarian 90% of the time, and doxy doesn't absorb well with dairy. So I end up having to try to time my day by when I can or can't eat and eat things I don't even want to eat just so I can have food with my pills. And all that for about a 15% improvement. I just don't know if it is worthwhile.
I have read about a time-released kind of doxy that goes by the name Oracea. It is for people with Rosacea, which is sometimes related to blepharitis. I wonder if I can get him to try me on that instead. It is supposed to be much more easy to tolerate.
I really don't know if the scrubs and compresses are helping either. For one month, before I found AzaSite, I used doxy, compresses, scrubs, and dandruff shampoo RELIGIOUSLY and I did not feel one bit better than I did if I did nothing. So I really think all the hygiene BS is nothing but malarky. I do it just in case, but it is a pain, and I just don't believe in it.
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