tag:blogger.com,1999:blog-70183481147466269732024-02-01T19:00:07.355-08:00The RA Science ExperimentLiving with rheumatoid disease and searching for what works.Anonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.comBlogger23125tag:blogger.com,1999:blog-7018348114746626973.post-5913899945381748402016-11-16T07:11:00.004-08:002016-11-16T07:12:13.141-08:00Susan’s Hair Update #1 <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgI3r_UFu-yV93qKOOPMM5hWLT2JvdAEJWPfntSEWruCXIRuqKQHPPIt7rBb-MzedczrAYRutl5kqBlBhx-M3rTBCqbG6CCUYGvxtGPOi7-HP926pfoIPPa3rKHewetJNtnSDVdnM00nKU/s1600/IMG_1687.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgI3r_UFu-yV93qKOOPMM5hWLT2JvdAEJWPfntSEWruCXIRuqKQHPPIt7rBb-MzedczrAYRutl5kqBlBhx-M3rTBCqbG6CCUYGvxtGPOi7-HP926pfoIPPa3rKHewetJNtnSDVdnM00nKU/s320/IMG_1687.jpg" width="320" /></a></div>
Well, my hair is still coming out at the rate of a brush full of strands a day. I went to see my stylist and he trimmed my hair up to my shoulders. I can pull it back into a stubby ponytail but no more braids for me, sigh. I thought he might cut it super short but his advice was to chop off all the length and leave it be. My pulled back hair still looks okay and it covers my scalp, so why chop it before we have to?<br />
<br />
Isn’t it funny how there are certain aspects of our appearance that we feel define us in some way? Mine has surely been my hair - very thick, brown, straight and quick to grow. I miss the weight of my heavy braid down my back between my shoulders. I have a feeling that when this hair loss grows back in (hopefully) it is not going to be brown anymore. The new little strands are all silvery grey. Am I having one of those dramatic hair color change episodes in my life after a seriously ill summer and some new chemo meds for the RA? Too funny.<br />
<br />
The good news is how well the Rituxan is working for me. I am in month 4 after my first set of infusions and the RA symptoms are very much gone. I still get tired and my muscles get sore from being active again, but that is pretty normal stuff. Hopefully I can make it through the six month cycle with no flares, which puts me into early February for the next round of medication. No need for prednisone, pain meds or a cane, how good can things get?<br />
<br />
I am also able to hand stitch again so my photo in this post is a close-up of my almost completed La Passacaglia quilt top that has been hand basted and stitched, made entirely of Liberty Tana Lawn fabrics. I was so crippled this summer that I did not sew much, but I have been playing catch up since the Rituxan has made me feel so very much better.<br />
<br />
Here’s hoping tomorrow is another good day!<br />
SusanAnonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com2tag:blogger.com,1999:blog-7018348114746626973.post-64142731011145452092016-11-07T16:34:00.000-08:002016-11-07T16:34:18.981-08:00Big Day Tomorrow<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkxqjca4b7okD7YbReUQvdJOPCCtq0_kKvrqYS6MzFnZZSxqOFfCOG9WIW8MIBZoZEfYdo3BtUHYNEFkc4rfht5vEOMADLbYl9oRxnJLLrdO73cV7YAC_c5-CEwAq7SrkpAps4FsSdSaM/s1600/IMG_0182.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="118" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkxqjca4b7okD7YbReUQvdJOPCCtq0_kKvrqYS6MzFnZZSxqOFfCOG9WIW8MIBZoZEfYdo3BtUHYNEFkc4rfht5vEOMADLbYl9oRxnJLLrdO73cV7YAC_c5-CEwAq7SrkpAps4FsSdSaM/s200/IMG_0182.JPG" width="200" /></a></div>
It is time to visit my hair stylist and deal with this hair loss thing. I guess I am lucky that I started out with enough hair for at least two people. The problem is that I have seriously thinned out all over and one of those poor people has lost all of their hair! Isn’t it funny how we choose our hairstyles? I have kept my hair long and straight because that is the best style with the least fuss for me. Having to change that hair style is a bit of a bummer.<br />
<br />
I have to smile. All summer when I was so very ill my hair looked wonderful. This fall, now that I am feeling so much better my hair is falling out. There’s justice for you! The doctors are unsure about the reasons for this hair loss. They seem to think it is not the Rituxan and Methotrexate combination, although they have prescribed a slow-release folic acid tablet for once a week in addition to the daily dose I have been taking for years.<br />
<br />
Pretty much any actions are too little and too late for my hair. I have lost so much that even if it does come back I will be an oddity with short on top and long hair down my back. Thus, the trip to the stylist. If my hair can’t be its beautiful self, it has to be changed. Who knows, it may all fall out before this journey comes to an end! Ugh! I posted a “long ago” picture from 40 years ago just for cheering up purposes. FYI, the “old hair” still looks (looked) pretty much the same.<br />
<br />
SusanAnonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com0tag:blogger.com,1999:blog-7018348114746626973.post-11121891389817367022016-10-06T08:20:00.003-07:002016-10-06T08:29:37.065-07:00The Good, the Bad and the Hair Loss<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgD5aIgIEm9pJnCChwTJ8gDBxj0isPc7DEXejr-TCryw92HhhMSqbL_kQjYeB5a6zfctFfl49H-IShv78dOYmGudZjH8kKNbIJOpzXGkL4LsQy7QJb0LsyqJtpYQjtAKRTF6tUq6nKON5Y/s1600/aspenssnow.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="132" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgD5aIgIEm9pJnCChwTJ8gDBxj0isPc7DEXejr-TCryw92HhhMSqbL_kQjYeB5a6zfctFfl49H-IShv78dOYmGudZjH8kKNbIJOpzXGkL4LsQy7QJb0LsyqJtpYQjtAKRTF6tUq6nKON5Y/s200/aspenssnow.jpg" width="200" /></a></div>
Woke up this morning to the first snow in Monument this season. Very nice. Hoss thought the cold weather and the snow was great - just what a collie would ask for. This is pretty early for a first snow. Wonder what that says about the pending winter season? Heard on the radio yesterday that Loveland Ski Area had fired up their snow-making machines as snow started falling in the high country. In my family, it’s time to get those snowboards waxed and ready to go!<br />
<br />
I am still feeling pretty good after my first round of
Rituxan infusions in August. The RA
symptoms are quite diminished and I am able to do many things I could not do
during my biologic-fee, super flare summer. Wish I could say that all of the pleurisy issues had also packed up
and left, but no. The breathing stuff is
slowly getting better but seems determined to hang around for the fall months.
Ugh.<br />
<div class="MsoNormal">
<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
I have discovered that there are some interesting Rituxan
side effects, at least for me. The biggest negative is that I am losing a lot
of hair every day in my brush.<span style="mso-spacerun: yes;"> </span>This has
been going on for a while and I can tell that my hair is getting thinner. <span style="mso-spacerun: yes;"> </span>Right now my hair is fairly long and it
started out pretty thick, too.<span style="mso-spacerun: yes;"> </span>Good
thing! I may actually have to get about 6 to 8 inches trimmed to take the
weight off of my hair and make it look more full again. I am taking folic acid already for the potential hair loss from the weekly Methotrexate and hoping that this hair attrition slows down and stops soon.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I have noticed that I blog less when I am feeling better. That is a good thing.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Hope this hair loss thing slows down soon! Otherwise it is a crew cut for me. Not sure what I think about that possibility...<o:p></o:p></div>
<div class="MsoNormal">
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Susan<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com4tag:blogger.com,1999:blog-7018348114746626973.post-18764902317059428032016-09-17T09:42:00.002-07:002016-09-17T09:42:50.399-07:00Happy September<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVxIOYDBhrRm3j4frexCK3EMeoXiJDOhWOP7W8jE3VeRQ5kNvT2sdXnTvaQIVwasKHaJ3gr2-dRbAC_uHlNFgzHwNd9XYctxz4zd7uAf-8vWZxm1wLHCcArLuE6SO1p_fGgfER22_GFaM/s1600/Aspens.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="117" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVxIOYDBhrRm3j4frexCK3EMeoXiJDOhWOP7W8jE3VeRQ5kNvT2sdXnTvaQIVwasKHaJ3gr2-dRbAC_uHlNFgzHwNd9XYctxz4zd7uAf-8vWZxm1wLHCcArLuE6SO1p_fGgfER22_GFaM/s200/Aspens.jpg" width="200" /></a></div>
<div>
September is turning out to be a most excellent month after
a crummy summer season. As a result, I
have not been blogging as much since I am actually up and out doing things,
amazing indeed. I have conquered most of the items on my “short list” of things
to do except for walking the collie a mile and a half. I am looking forward to overcoming that list
item in the very near future.</div>
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<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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Funny enough, I still wake up at night with the need to
catch my breath. I think the summer totally messed up my sleep patterns, let’s
hope they settle down.<span style="mso-spacerun: yes;"> </span>Otherwise I will
be getting a lot of hand piecing for my quilt and online professor time
completed in the wee hours of the morning. <o:p></o:p></div>
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<br /></div>
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Went to a craft fair with my buddy Michele and did not do so
bad walking around all of the exhibits and carrying the accumulating purchases.<span style="mso-spacerun: yes;"> </span>This was a great test to pass, since I have
other things that need doing if I have the endurance and the strength to walk
and get them done.<span style="mso-spacerun: yes;"> </span>It is amazing how
being ill for a while can impact your overall strength and ability to deal with
daily tasks, who knew?<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
Guess it is time to say thank-you to the Rituxan for working
so very well. It will be interesting to see how this medication acts over the
next several months. My only complaint is that I am definitely shedding more
hair in my hairbrush than I used to.<span style="mso-spacerun: yes;"> </span>Maybe
it its time to up that folic acid daily dose!<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
Here’s to tomorrow being another good day!<o:p></o:p></div>
<div class="MsoNormal">
Susan<o:p></o:p></div>
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Anonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com1tag:blogger.com,1999:blog-7018348114746626973.post-90581186853896171552016-09-05T05:47:00.003-07:002016-09-05T05:48:41.073-07:00September is the First Annual Rheumatic Disease Awareness Month<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir9LqI2oV5qvH6BM7i8t8SGhaDVEb3zTXXWmgckPKkfw5g_C9D6rs-Y5A4WQd7P2aA-kyRJouDSSBMJTj0m6rIv_-awrAfu-1qY13gG9yE-p-OHoRThAAA-4tlKYBYVLF2U14z5TOTENo/s1600/Rheumatic-Disease-Awareness-Month-2016.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="99" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir9LqI2oV5qvH6BM7i8t8SGhaDVEb3zTXXWmgckPKkfw5g_C9D6rs-Y5A4WQd7P2aA-kyRJouDSSBMJTj0m6rIv_-awrAfu-1qY13gG9yE-p-OHoRThAAA-4tlKYBYVLF2U14z5TOTENo/s320/Rheumatic-Disease-Awareness-Month-2016.png" width="320" /></a></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<b><span style="color: #262626; font-family: "calibri"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Times; mso-hansi-theme-font: major-latin;"><span style="font-size: large;">September is the first Annual Rheumatic Disease Awareness Month
(RDAM)</span><o:p></o:p></span></b></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i style="mso-bidi-font-style: normal;"><span style="color: #1b1b1b; font-family: "calibri"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Helvetica; mso-hansi-theme-font: major-latin;"><br /></span></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i style="mso-bidi-font-style: normal;"><span style="color: #1b1b1b; font-family: "calibri"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Helvetica; mso-hansi-theme-font: major-latin;">“Hundreds of
diseases. One voice.”</span></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #262626; font-family: "calibri"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Times; mso-bidi-font-weight: bold; mso-hansi-theme-font: major-latin;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #262626; font-family: "calibri"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Times; mso-bidi-font-weight: bold; mso-hansi-theme-font: major-latin;">The</span><span style="color: #262626; font-family: "calibri"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Times; mso-hansi-theme-font: major-latin;"> American College of Rheumatology (ACR)
and its national public awareness campaign, <a href="http://www.simpletasks.org/" target="_blank">Simple Tasks</a>, have created
Rheumatic Disease Awareness Month. ACR is the <span style="mso-bidi-font-weight: bold;">leading association representing rheumatologists and rheumatology health </span>professionals.
There are many, many conditions that fall under the rheumatic disease header,
such as rheumatoid arthritis, lupus, gout, and more than 100 lesser-known
conditions.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal">
<span style="color: #262626; font-family: "calibri"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Times; mso-hansi-theme-font: major-latin;">RDAM
seeks to increase public understanding and awareness of the symptoms, risk
factors, treatment options, personal and economic impact, and lifestyle and
healthcare challenges associated with rheumatic diseases. September provides an
opportunity for concerned individuals and groups to advocate for the health and
wellbeing of those living with rheumatic disease (like me!) and to advance
healthcare policies that help patients access safe, affordable, and effective
healthcare. <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #262626; font-family: "calibri"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Times; mso-hansi-theme-font: major-latin;">As the “RA Science Experiment”, I am trying in my own small way
to raise awareness about my rheumatic disease. Not many people fully understand
RA symptoms and its complications, speaking together as one voice, we can
change that during RDAM 2016.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal">
<span style="color: #262626; font-family: "calibri"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Times; mso-hansi-theme-font: major-latin;">Check
out the ACR’s Simple Tasks website (</span><span style="color: #08205e; font-family: "calibri"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Times; mso-hansi-theme-font: major-latin;"><a href="http://www.simpletasks.org/">www.SimpleTasks.org</a></span><span style="color: #262626; font-family: "calibri"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Times; mso-hansi-theme-font: major-latin;">) and watch for the official RDAM 2016 hashtag, <b>#RDAM</b>. You can also link with the ACR on Facebook. <span style="font-family: calibri;"> </span></span></div>
<div class="MsoNormal">
<span style="color: #262626; font-family: "calibri"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Times; mso-hansi-theme-font: major-latin;"><br /></span></div>
<div class="MsoNormal">
<span style="color: #262626; font-family: "calibri"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Times; mso-hansi-theme-font: major-latin;">Susan</span></div>
Anonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com0tag:blogger.com,1999:blog-7018348114746626973.post-9938843982899141502016-08-28T08:27:00.004-07:002016-08-28T08:27:41.782-07:00Riding the Rituxan Express<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjrBzFH03EhIE-UUyH2Pkk9V9cTzphzf4oZaWB8D5mUZPLRjnkLslqO4okPmjXu9BWWk65mK8OaUBcvyJY5BRZaOJM7YWLmGZXg-p7kRrzg9Fau63vu-z4ghULEZblw_DbKsC6wCtzwec/s1600/train.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="134" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjrBzFH03EhIE-UUyH2Pkk9V9cTzphzf4oZaWB8D5mUZPLRjnkLslqO4okPmjXu9BWWk65mK8OaUBcvyJY5BRZaOJM7YWLmGZXg-p7kRrzg9Fau63vu-z4ghULEZblw_DbKsC6wCtzwec/s200/train.jpg" width="200" /></a></div>
My second Rituxan infusion last Thursday was an express trip
to hopefully feeling better. Since the
initial infusion two weeks ago was uneventful and I did not react to the
medication in any way, this second infusion was on the proverbial “fast track”. The drip speed was periodically adjusted upwards
over the three hours that it took to get all that stuff into me. As long as I felt okay (no headache or other
odd happenings), we were going to get this infusion done in the most efficient
manner possible. Amazing and a bit surreal, I must admit.<br /><div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Once again, the methylprednisolone kept me up very late. My hands were not hurting so I was able to do a lot of paper piecing on my
current quilt. Seems like the pattern is to sleep away the afternoon after the
infusion and then be up late in to the night. <span style="mso-spacerun: yes;"> </span>The rheumatologist is very optimistic about
this new medication and my reaction to the first infusion.<span style="mso-spacerun: yes;"> </span>Two months should be enough time to tell just
how well (or not well) Rituxan works for me. So far, so good for this RA
science experiment.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I have a short list of things I am looking forward to being
able to do in the short term.<span style="mso-spacerun: yes;"> </span>I have
been unable to do so many things this summer, I am happy to see fall beginning
as the nights cool off here and the bushes get their berries.<span style="mso-spacerun: yes;"> For me, t</span>his summer of pain and discomfort is one to let go and forget
about. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My “want to do” list includes:</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<o:p><span style="text-indent: -0.25in;"> 1. Weeding and planting in my flower gardens</span><br style="text-indent: -24px;" /><span style="text-indent: -0.25in;"> 2. Paper-piecing rosettes on my quilt project </span><span style="text-indent: -0.25in;"> </span><br style="text-indent: -24px;" /><span style="text-indent: -0.25in;"> 3. Walking the dog every day around the ponds (a distance of 1.5 miles)</span><br style="text-indent: -24px;" /><span style="text-indent: -0.25in;"> 4. Taking the stairs with no shortness of breath</span><br style="text-indent: -24px;" /><span style="text-indent: -0.25in;"> 5. Carrying in the groceries myself, more than one bag at a time</span><br style="text-indent: -24px;" /><span style="text-indent: -0.25in;"> 6. Walking, walking, walking</span><br style="text-indent: -24px;" /><span style="text-indent: -0.25in;"> 7. Sleeping better and longer every night</span> </o:p></div>
<div class="MsoNormal">
<o:p><br /></o:p></div>
<div class="MsoNormal">
Not too ambitious of a list, is it?<span style="mso-spacerun: yes;"> </span>I sure hope I can achieve these things that I
used to take for granted.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The best thing is that I may be able to get my hair
trimmed.<span style="mso-spacerun: yes;"> </span>When I got sick, I decided I
would not have it cut until I was feeling better.<span style="mso-spacerun: yes;"> </span>Let’s hope I get there soon since my hair is
almost to my waist – it is kind of like wearing a carpet down your back. While the
rest of me took a beating from the pleurisy and the RA symptoms this summer, my
hair was flourishing and grew like crazy. At least it didn’t turn white
or anything. Go figure.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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<div class="MsoNormal">
Susan<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com1tag:blogger.com,1999:blog-7018348114746626973.post-67371939208383345562016-08-19T07:36:00.000-07:002016-08-19T07:36:21.016-07:00Now I’ve Gone and Done It…<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP-9TYITmgDgTqtZueK3wVfgt_i6ttWAxVKyT1Au_4FTyoGiFDoLx9y6nBQVsPvGr9KzxqUBFHW29ab4etnxB6i3Yyb_hheEuK3wVV6kf2nx7A1aHk6X71ZGn02sYBLNFRaWft9z21guI/s1600/Handicapped_Parking_Permit_Required_BT49.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP-9TYITmgDgTqtZueK3wVfgt_i6ttWAxVKyT1Au_4FTyoGiFDoLx9y6nBQVsPvGr9KzxqUBFHW29ab4etnxB6i3Yyb_hheEuK3wVV6kf2nx7A1aHk6X71ZGn02sYBLNFRaWft9z21guI/s200/Handicapped_Parking_Permit_Required_BT49.jpg" width="133" /></a></div>
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Took a little trip to the Colorado Department of Motor
Vehicles (DMV) yesterday with paperwork in hand from the doctor authorizing a
handicapped-parking placard for my car. Ugh.
I am not sure what was more upsetting – having the actual permit in hand
or realizing that now I have something more in common with my 83-year-old
dynamo of a mother since she has a handicapped parking permit, too.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Somehow this feels like a checkmark in the “lose” column to
me.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Acquiring this parking placard came about after a recent
trip to the mall and a very slow, breathless walk from the car into the mall
itself. This was a not unexpected experience as the pleurisy and its annoying
symptoms continue to hang around. When I visited my family practice doctor on
Monday for my “pleurisy checkup”, I mentioned this laborious walk into the
mall and how challenging it was to go from point A to point B when those points
are not that close together. End result: the completed and doctor-approved
application for this parking placard and my subsequent trip to the DMV.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Hopefully, there will be many good days and this placard
will not be necessary. I have to admit; on the bad days, being able to park
closer to my objective will be a wonderful thing. Admitting the need for
something like this is where it gets more complicated. Am I giving in to RA by
recognizing and acting upon these cyclical physical limitations? The grownup me
says “not at all” but the younger me says “loser!”<span style="mso-spacerun: yes;"> </span>I imagine this is a situation many RA science
experiments have found themselves in. How did you deal with it?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My first Rituxan infusion has resulted in much less
inflammation and pain, which is a big help. My second infusion is next Thursday
and I am hoping things will get even better still after that. The pleurisy’s
slow disappearance is really the bigger, ongoing issue. I still have some pain
on the right side and shortness of breath if I walk too fast or try to carry
something heavy. Perhaps the new parking placard will be used every now and
then versus used every day.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Here’s hoping tomorrow is another good day!<o:p></o:p></div>
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<div class="MsoNormal">
Susan<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com0tag:blogger.com,1999:blog-7018348114746626973.post-31982613373941356992016-08-11T12:24:00.001-07:002016-08-11T12:24:37.260-07:00An Infusion for SusanWell, my first Rituxan infusion went off without a “hitch in
it’s giddy up”. After having the infusion postponed for two weeks, I was worried
it might get deferred again yesterday. However, that was not the case. After
four hours hooked up to the IV, I was ready to get up and move around. Once
again, I had my technology, my books, my snacks and a bottle of water neatly
packed and ready to rumble. This time everything came in handy to pass the
time.<br /><div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The nurse started out the IV drip really slow, and treated
me with all of the additional reaction drugs I was expecting – Ibuprofen,
Methylprednisolone and Benadryl. After about an hour, she turned up the drip a
bit as everything was going very well and I was not reacting to the Rituxan in
any way that I could tell. The only eventual reaction that I had was to the Benadryl.<span style="mso-spacerun: yes;"> </span>It made me fall asleep for about an hour or
so.<span style="mso-spacerun: yes;"> </span>Sure hope I didn’t snore!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I slept away my afternoon and stayed up too late yesterday
evening as a result.<span style="mso-spacerun: yes;"> </span>The good news is
that today I really feel good.<span style="mso-spacerun: yes;"> </span>The
inflammation and pain has subsided and I can move around much more freely.<span style="mso-spacerun: yes;"> </span>The shortness of breath and rib pain from the
pleurisy is still here, though.<span style="mso-spacerun: yes;"> </span>Let’s
hope that continues to fade away over time. My second infusion is two weeks out
on a Thursday and then I won’t have another for about 6 months.<span style="mso-spacerun: yes;"> </span>Now that is an infusion schedule I can live
with.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Hoping tomorrow is another good day (and I think it will
be!)<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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Susan, the RA Science Experiment <o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com4tag:blogger.com,1999:blog-7018348114746626973.post-47518378374191705542016-08-03T06:54:00.001-07:002016-08-03T06:54:14.863-07:00The 2016 RA in America Survey<div class="MsoNormal">
<span style="color: #262626; font-family: Calibri; font-size: 11.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Verdana; mso-hansi-theme-font: major-latin;">RA patients, be sure to take the <a href="https://healthunion.az1.qualtrics.com/jfe/form/SV_6ip141Isz8wGlUx?Source=Facebook" target="_blank">2016 RA in America Surveyfrom RheumatoidArthritis.net.</a> <span style="mso-spacerun: yes;"> </span>While you
are on their web site, have a quick look see at last year’s survey results for <a href="https://rheumatoidarthritis.net/graphics/in-america-studies/ra-america-2015/" target="_blank">RA in America 2015</a>, a very interesting read indeed. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #262626; font-family: Calibri; font-size: 11.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Verdana; mso-hansi-theme-font: major-latin;">When I was writing the opening line to this post, I wasn’t
happy using the term “patients” for everyone who suffers from this chronic
disease named RA.<span style="mso-spacerun: yes;"> </span>Being the curious
type, I went online to thesaurus.com looking for a synonym that might work better.
OMG.<span style="mso-spacerun: yes;"> </span>I think I chose the best word given
the other possibilities: case, inmate, subject, sufferer, victim, convalescent,
emergency, invalid, outpatient, shut-in or sick person. Yow.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Calibri; font-size: 11.0pt; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">After you
finish the survey, take a quick trip over to Carla Kienast’s blog and respond
to <a href="https://carlascorner.wordpress.com/2016/08/01/in-a-word/" target="_blank">her pop quiz about the word you used in the survey to describe your RA</a>. The
range of words describing people’s experiences and impression of RA is right on
point. <o:p></o:p></span></div>
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<span style="font-family: Calibri; font-size: 11.0pt; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><br /></span></div>
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<span style="font-family: Calibri;"><span style="font-size: 11pt;">I took the survey and my one word answer decribing my RA was </span><span style="font-size: 15px;">“</span><span style="font-size: 11pt;">discouraging</span><span style="font-size: 15px;">”</span><span style="font-size: 11pt;">. Today is a not-so-discouraging day, which makes it a good day. </span></span></div>
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<span style="font-family: Calibri;"><span style="font-size: 11pt;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri;"><span style="font-size: 11pt;">Happy Wednesday!</span></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri;"><span style="font-size: 11pt;">Susan</span></span></div>
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<br /></div>
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Anonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com0tag:blogger.com,1999:blog-7018348114746626973.post-5179212184954809432016-07-31T07:57:00.002-07:002016-07-31T08:14:07.520-07:00Seven Things that are Tough to Do With RA<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuCyCK6m_juTgHmC7p2jpWuNxfsZw0dDukzZpyjfQZG3NNJiKZYJBrCHKGv34ek3GPVqLHc6_WtPEJULpAJ7GuZBzeCxqlbiBcf9ybIPPv4H80wdk1VUOSmUVpufV1u9RfrOL8WsK9T1Y/s1600/todofunny.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuCyCK6m_juTgHmC7p2jpWuNxfsZw0dDukzZpyjfQZG3NNJiKZYJBrCHKGv34ek3GPVqLHc6_WtPEJULpAJ7GuZBzeCxqlbiBcf9ybIPPv4H80wdk1VUOSmUVpufV1u9RfrOL8WsK9T1Y/s1600/todofunny.jpg" /></a></div>
<div class="MsoNormal">
I have been thinking about all of the small and really
annoying things that are difficult for me to do with RA. The little things
really light me up. For me, it is much easier to address and deal with the
larger issues of this chronic disease. Funny
enough, writing this post about them makes me laugh. A sense of humor is
essential (see accompanying to do list graphic as an example) when you have RA, so get with the program. Here is my top seven list for today:</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">1. Walking the dog. </b>Poor
Hoss, he misses his daily walkies.<span style="mso-spacerun: yes;"> </span>He
gets to head out for adventures when the grandchildren are here.<span style="mso-spacerun: yes;"> </span>Good thing he is a gentle giant on the leash,
otherwise he would drag them all over the place.<span style="mso-spacerun: yes;"> </span>Camp Bow Wow is also a godsend since he can go
there for the day and play with his doggie friends.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">2. Bending over to
pick things up. </b>Now here is something really annoying.<span style="mso-spacerun: yes;"> </span>Imagine if every time you try to bend over to
pick something up, the pain kicked in and you could not breathe.<span style="mso-spacerun: yes;"> </span>I never thought I would have to catch my
breath after picking up a piece of paper from the floor, who knew?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">3. Going up and down
the stairs. </b>Ouch, ouch, ouch. Hold on tight and don’t fall. Enough said.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">4. Weeding the flower
gardens. </b>I have discovered this year that my neglected flower gardens look
better than ever.<span style="mso-spacerun: yes;"> </span>I was able to weed a
bit early in the summer but many weeds are still there.<span style="mso-spacerun: yes;"> </span>I hate weeds in my garden but I am learning
to live with them.<span style="mso-spacerun: yes;"> </span>Good thing the
flowers are so huge this year, ‘cuz you can’t see the weeds.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">5. Getting to sleep. </b>A
good night’s sleep is truly a gift. Of course, you have to fall asleep AND stay
asleep to achieve this lofty goal.<span style="mso-spacerun: yes;"> </span>Some
nights are better than others.<span style="mso-spacerun: yes;"> </span>I keep
telling myself that the best thing about a bad night of sleep is that I will be
tired and sleep better the following night.<span style="mso-spacerun: yes;">
</span>That cheers me up considerably!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">6. Lifting, carrying and
opening stuff. </b>Danny, can you carry this upstairs for me?<span style="mso-spacerun: yes;"> </span>Can you open this jar for me? Can you pick up
this whatever and do something with it?<span style="mso-spacerun: yes;">
</span>Ugh.<span style="mso-spacerun: yes;"> </span>I want to pick up and carry
my own stuff, thank-you. Hopefully, my family will not start charging me by the
request as it would get really expensive really fast. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And my personal favorite, #7, which is (drum roll, please!)<o:p></o:p><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzv9w8RVbUN8lvqA20evcop8KedvUqzoR1omRnhf_-jD71O7fFkmAs4AkatOb2eKB8BADywSUKW-AvgHenj8jt1DaPKJ530hWdOa4jZ0SXA9k7WhrSKXObCeW8-quZtK9xZdRUp_DROpQ/s1600/margarita.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzv9w8RVbUN8lvqA20evcop8KedvUqzoR1omRnhf_-jD71O7fFkmAs4AkatOb2eKB8BADywSUKW-AvgHenj8jt1DaPKJ530hWdOa4jZ0SXA9k7WhrSKXObCeW8-quZtK9xZdRUp_DROpQ/s200/margarita.jpg" width="200" /></a></div>
<b style="mso-bidi-font-weight: normal;">7. Not having a
drink. <span style="mso-spacerun: yes;"> </span></b>A good margarita (on the
rocks, please, with your best tequila, a splash of Cointreau and fresh lime
juice!) would go a long way towards reconciling me to the previous 6 constraints.<span style="mso-spacerun: yes;"> </span>It would minimize my irritation and annoyance
with the “little things”, too. Unfortunately, drinking alcohol is not
recommended given the medications I am taking.<span style="mso-spacerun: yes;">
</span>Poor liver, it is getting stressed out enough and does not need the
additional work.<span style="mso-spacerun: yes;"> </span>I tell myself that I am
saving my occasional drink for special occasions, and that has worked well do
far.<span style="mso-spacerun: yes;"> </span>Of course, now I need a special
occasion … thoughts?</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br />
Here’s hoping that tomorrow is another good day!</div>
<div class="MsoNormal">
Susan</div>
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<span style="background-color: #bd081c; background-position: 3px 50%; background-repeat: no-repeat no-repeat; background-size: 14px; border-bottom-left-radius: 2px; border-bottom-right-radius: 2px; border-top-left-radius: 2px; border-top-right-radius: 2px; border: none; color: white; cursor: pointer; display: none; font-family: "helvetica neue" , "helvetica" , sans-serif; font-size: 11px; font-style: normal; font-variant: normal; font-weight: bold; left: 215px; line-height: 20px; opacity: 0.85; padding: 0px 4px 0px 0px; position: absolute; text-align: center; text-indent: 20px; top: 702px; width: auto; z-index: 8675309;">Save</span><span style="background-color: #bd081c; background-position: 3px 50%; background-repeat: no-repeat no-repeat; background-size: 14px; border-bottom-left-radius: 2px; border-bottom-right-radius: 2px; border-top-left-radius: 2px; border-top-right-radius: 2px; border: none; color: white; cursor: pointer; display: none; font-family: "helvetica neue" , "helvetica" , sans-serif; font-size: 11px; font-style: normal; font-variant: normal; font-weight: bold; left: 215px; line-height: 20px; opacity: 0.85; padding: 0px 4px 0px 0px; position: absolute; text-align: center; text-indent: 20px; top: 702px; width: auto; z-index: 8675309;">Save</span><br />
<span style="background-color: #bd081c; background-position: 3px 50%; background-repeat: no-repeat no-repeat; background-size: 14px; border-bottom-left-radius: 2px; border-bottom-right-radius: 2px; border-top-left-radius: 2px; border-top-right-radius: 2px; border: none; color: white; cursor: pointer; display: none; font-family: "helvetica neue" , "helvetica" , sans-serif; font-size: 11px; font-style: normal; font-variant: normal; font-weight: bold; line-height: 20px; opacity: 1; padding: 0px 4px 0px 0px; position: absolute; text-align: center; text-indent: 20px; width: auto; z-index: 8675309;">Save</span><span style="background-color: #bd081c; background-position: 3px 50%; background-repeat: no-repeat no-repeat; background-size: 14px; border-bottom-left-radius: 2px; border-bottom-right-radius: 2px; border-top-left-radius: 2px; border-top-right-radius: 2px; border: none; color: white; cursor: pointer; display: none; font-family: "helvetica neue" , "helvetica" , sans-serif; font-size: 11px; font-style: normal; font-variant: normal; font-weight: bold; line-height: 20px; opacity: 1; padding: 0px 4px 0px 0px; position: absolute; text-align: center; text-indent: 20px; width: auto; z-index: 8675309;">Save</span>Anonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com0tag:blogger.com,1999:blog-7018348114746626973.post-71734020722556339002016-07-29T07:36:00.003-07:002016-07-29T07:36:34.805-07:00No Infusion for Susan<br /><div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLhcoEM8mhFKukb1b6OnmpoVCddKUQO-Dzse7n76cQ8_EdvaZSJ7v9Abx3kxucwgT8bpLSw25JnthChq72Fiwu-SxjpTuoCszxDaia_jvyjuOM63PXuJY3Wm9P3KwJ5oBHSshFQRfnVdk/s1600/Hand.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="78" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLhcoEM8mhFKukb1b6OnmpoVCddKUQO-Dzse7n76cQ8_EdvaZSJ7v9Abx3kxucwgT8bpLSw25JnthChq72Fiwu-SxjpTuoCszxDaia_jvyjuOM63PXuJY3Wm9P3KwJ5oBHSshFQRfnVdk/s200/Hand.jpg" width="200" /></a></div>
<div class="MsoNormal">
Well, on the one hand you could say that my first Rituxan
infusion was quite uneventful.
Unfortunately, it was uneventful because in the end there was no
infusion. When I got dropped off on
Wednesday morning, I was ready to spend the afternoon hooked up to the IV
stuff. I had my technology, my books, my
snacks and a bottle of lemonade neatly packed and ready to rumble.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When I got to the doctor’s office and checked in at the
desk, I stopped to ask them about resuming my methotrexate.<span style="mso-spacerun: yes;"> </span>I have not been taking it this summer since
the pleurisy episode and could not remember how to ramp the dosage back up to
what it needs to be.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
That comment started the conversation about how I was
feeling and what my current pleurisy symptoms were. <span style="mso-spacerun: yes;"> </span>There are some lingering issues such as
occasional shortness of breath, trouble laying down flat, and rib cage pain
spasms (ouch, these really hurt!)<span style="mso-spacerun: yes;"> </span>To
make a long story short, the doctors at the practice put their collective heads
together and decided that I needed more time for my lungs to heal up before
having an infusion of any type. The fear is that the infusion will set me back
to square one with the pleurisy, which started with a three-day hospital stay. Yuck.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, I called my husband and he came back to fetch me.<span style="mso-spacerun: yes;"> </span>Right now I have an appointment for the
infusion in two weeks, but I am not sure if it will actually happen.<span style="mso-spacerun: yes;"> </span>I do appreciate the rheum doc team thinking
things through and making a decision.<span style="mso-spacerun: yes;">
</span>Guess we will have round two of that situation in about ten days from now.
Fingers crossed that everything works out as it should.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In the meantime, it is prednisone and painkillers as needed
to address this major flare I am living with during the dark days of no
biologic medications in my system.<span style="mso-spacerun: yes;"> </span>If I
wasn’t a fan of biologics before, I certainly am a fan now.<span style="mso-spacerun: yes;"> </span>The good thing is that my flare cycles and I
seem to have a variety of days in sequence – a good day where I typically
overdo things, a bad day after the good day when I pay for my overdoing and
then an in-between day leading to the next good day. The days themselves also
have a pattern – feeling pretty good in the morning and then sliding down that
slippery slope until I am really hurting by evening time. <span style="mso-spacerun: yes;"> Does anyone else have days that act like this?</span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, more adventures await!<span style="mso-spacerun: yes;">
</span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
(Couldn’t resist the post title, too funny.) <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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<div class="MsoNormal">
Susan<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com2tag:blogger.com,1999:blog-7018348114746626973.post-55990409248260369802016-07-25T06:54:00.000-07:002016-07-25T08:06:56.280-07:00Are We There Yet? Not Quite … <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsxlH31dZwNS9hzQA2uLNoSdbeIimmcF0Krsr_2JpTbHH6Qlhdd1bQy9kOnlXUfGorT6-4K6M63KijKFDQBlY-cTKCHDuposNAcqxrPz2mIMRN6XqJvCIPUktHiuI0_Z7166I8DICjyKw/s1600/IMG_0432.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsxlH31dZwNS9hzQA2uLNoSdbeIimmcF0Krsr_2JpTbHH6Qlhdd1bQy9kOnlXUfGorT6-4K6M63KijKFDQBlY-cTKCHDuposNAcqxrPz2mIMRN6XqJvCIPUktHiuI0_Z7166I8DICjyKw/s200/IMG_0432.jpg" width="200" /></a></div>
<div>
Here I sit on this beautiful Monday morning, counting down the
days to my first Rituxan infusion on Wednesday. Almost there, almost there. I am curious what
it is like to undergo such a long infusion process after the relatively quick
(2 hour) experience of Remicade infusions. I am wondering what it is like to
have to have IV steroids, antihistamines and analgesics as part of the infusion
process and how much they help the recipient.
I am worried about why the extra stuff is needed and a bit concerned
about the possible side effects or complications of this medication. Ah well, all questions will be answered on
Wednesday this week.</div>
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<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Last week has been my best week since I got sick at the
beginning of the summer.<span style="mso-spacerun: yes;"> </span>Breathing is
better and overall lung health is very much improved as the pleurisy continues
to clear out. <span style="mso-spacerun: yes;"> </span>If I wasn’t in a permanent
RA flare sans any infusion meds in my system, I would be very chipper.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The very best thing has been driving my car (her name is Sylvia, bestowed upon her by my mother) again and
getting out and about.<span style="mso-spacerun: yes;"> </span>Isn’t it funny
how the little things mean so much?<span style="mso-spacerun: yes;"> </span>It is great to do errands, run out for coffee, or pick up a grandchild whenever I
want to or whenever required.<span style="mso-spacerun: yes;"> </span>I saw a
friend in passing yesterday and was delighted to wave to her from the window of
my car. These little freedoms are easy to forget in the hubbub of daily life,
but you really miss them when they are gone from your daily hubbub. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Never a dull moment.<span style="mso-spacerun: yes;">
</span>Almost there!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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Susan<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com0tag:blogger.com,1999:blog-7018348114746626973.post-85625454801980319702016-07-17T11:13:00.004-07:002016-07-17T15:08:10.022-07:00Back in the Flower Garden Again … FINALLY<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYbqSITdW7npaGz3W-dWT_aiFAOQ5mo7fzF7vQNDiIEpgG9ZcQ7j6B29cZOL2ezejkSZtgduUfaC3tuE4PQrlzuuDAaCwPORmIhcL-pppVp8FsrHwKvR524I7QZr7wEzrfvctDknQrPDM/s1600/IMG_1368.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYbqSITdW7npaGz3W-dWT_aiFAOQ5mo7fzF7vQNDiIEpgG9ZcQ7j6B29cZOL2ezejkSZtgduUfaC3tuE4PQrlzuuDAaCwPORmIhcL-pppVp8FsrHwKvR524I7QZr7wEzrfvctDknQrPDM/s200/IMG_1368.jpg" width="200" /></a></div>
Well, this week has been a much better week. The best thing is that I find myself back in
the flower gardens once again. I have
been hand-watering the flower beds and hanging plants with the hose every
morning. Guess that is my morning
workout! I do have to sit down about
halfway through the process and catch my breath. Never mind that, though, it is wonderful just
to be back out doing a routine daily task every morning. I have even pulled some
weeds, which is even more fun in a strange sort of way.<br />
<div>
<br /></div>
<div>
Per my picture and photos in previous posts, you can see that I like nasturtiums. For some reason, they grow really well here in Colorado for me and take over their pot or flower bed location on a regular basis throughout the summer. Who can resist a plant that does so well in this arid and challenging climate at 7500 feet of altitude? Too much fun.<br />
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<o:p></o:p></div>
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<br /></div>
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This is a transition week for me with some things (but not
too many things) to do, including jury duty.<span style="mso-spacerun: yes;">
</span>As I continue to breathe better and move around more, my spirits rise
accordingly. The RA flare still cycles from “so so” to really bad, but that was
an expected outcome of the transition between biologics.<span style="mso-spacerun: yes;"> </span>Fingers crossed that I am healthy enough for
my first Rituxan infusion about two weeks from now. Looks like that will be the
case unless something changes and surprises me.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
I am working hard at sleeping better. The afternoon naps are no longer allowed in the hopes I will sleep better at night. Waking up after three or four hours of sleep and then getting back to sleep again is tough to overcome but I am trying. I read an article talking about how your body is active with oxygen during that time and that if you have lung issues you may very well awaken in distress and be unable to settle back to sleep. I have no idea if this is really true, but as an explanation is sure fits the situation.</div>
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<br /></div>
<div class="MsoNormal">
Funny how you miss the routine things you do as part of your
life when you are feeling poorly. I suppose we all get used to those routine
activities and forget that we ever missed them.<span style="mso-spacerun: yes;">
</span>Guess that is okay, although I am going to try and remember what it was
like to be seriously ill for six weeks of my summer and appreciate the little
things more.<o:p></o:p></div>
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<br /></div>
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Here’s hoping tomorrow is another good day!<o:p></o:p></div>
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Susan<o:p></o:p></div>
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<span style="-webkit-font-smoothing: antialiased; background-color: #bd081c; background-image: url(data:image/svg+xml; background-position: 3px 50%; background-repeat: no-repeat no-repeat; background-size: 14px; border-bottom-left-radius: 2px; border-bottom-right-radius: 2px; border-top-left-radius: 2px; border-top-right-radius: 2px; border: none; color: white; cursor: pointer; display: none; font-family: 'Helvetica Neue', Helvetica, sans-serif; font-size: 11px; font-style: normal; font-variant: normal; font-weight: bold; line-height: 20px; opacity: 1; padding: 0px 4px 0px 0px; position: absolute; text-align: center; text-indent: 20px; width: auto; z-index: 8675309;">Save</span><span style="-webkit-font-smoothing: antialiased; background-color: #bd081c; background-image: url(data:image/svg+xml; background-position: 3px 50%; background-repeat: no-repeat no-repeat; background-size: 14px; border-bottom-left-radius: 2px; border-bottom-right-radius: 2px; border-top-left-radius: 2px; border-top-right-radius: 2px; border: none; color: white; cursor: pointer; display: none; font-family: 'Helvetica Neue', Helvetica, sans-serif; font-size: 11px; font-style: normal; font-variant: normal; font-weight: bold; line-height: 20px; opacity: 1; padding: 0px 4px 0px 0px; position: absolute; text-align: center; text-indent: 20px; width: auto; z-index: 8675309;">Save</span>Anonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com2tag:blogger.com,1999:blog-7018348114746626973.post-69340992445650316162016-07-11T10:09:00.000-07:002016-07-17T13:40:53.549-07:00Getting All Those “To Dos” Done<div class="MsoNormal">
<b><br /></b></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjopIV4ciFgFuX8qND2coSAB-BStHzyC5e709DrSrL0iVu2m2q2GPvT4zv06doX_7iiiYMOHpP3yUZtSE4YfLl57nT8-m85d3I2mQeV_Pbsdc8hw3UG04r-lNhmbp4n9Q-uMyU_rml6PbI/s1600/PostIts.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjopIV4ciFgFuX8qND2coSAB-BStHzyC5e709DrSrL0iVu2m2q2GPvT4zv06doX_7iiiYMOHpP3yUZtSE4YfLl57nT8-m85d3I2mQeV_Pbsdc8hw3UG04r-lNhmbp4n9Q-uMyU_rml6PbI/s200/PostIts.jpg" width="200" /></a></div>
<div class="MsoNormal">
<b>“That's the thing about pain.... It demands to be felt.”</b></div>
<div class="MsoNormal">
<b>John Green, </b><i style="mso-bidi-font-style: normal;"><b>The Fault
in Our Stars</b><o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I have things I want to do and today I am going to try to do
some of them – sewing, watering flowers, grocery shopping, and straightening up
certain areas of the house.<span style="mso-spacerun: yes;"> </span>This will be
a slow process, but I think I can get a few items checked off the to-do list.
My project manager’s mindset and RA are definitely at odds with one another as
I try to navigate my to-do list while the RA gets in the way.<span style="mso-spacerun: yes;"> </span>Guess RA isn’t a risk in my personal project
plan – dealing with RA is a certainty for the rest of my days. That makes it a
100% kind of a risk, too funny. A good friend of mine has always said there are
only two types of risk – those that happen and those that do not. Boy, was he right. (Thank you, Phil!)<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Wow, this coming week is my sixth week of pleurisy and
respiratory issues.<span style="mso-spacerun: yes;"> </span>That is way too long
to feel so bad.<span style="mso-spacerun: yes;"> </span>Combine the past five
weeks and an extra week before when the shingles struck and that equals no fun
so far this summer. Ever so slowly, the lungs are clearing up.<span style="mso-spacerun: yes;"> </span>The smoke from the Nederland-area wildfire here
in Colorado kept me up last night. That was expected, so I had a new book ready
for reading. I read the whole book, too, which was actually enjoyable. <span style="mso-spacerun: yes;"> </span>The more I read, the faster I get at
reading.<span style="mso-spacerun: yes;"> </span>I need to rejoin the library
before this gets too expensive. In any case, it is nice to see these lung-related
symptoms disappear, and the sooner the better.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The bigger issue is the doctor-induced RA flare that I am
experiencing, ouch. There are three more weeks until my first Rituxan infusion.
I am definitely counting down during this Remicade to Rituxan transition.<span style="mso-spacerun: yes;"> </span>And as I approach my birthday this week, I
feel like I am 150 years old with all these aches and pains.<span style="mso-spacerun: yes;"> </span>It is very discouraging to wake up in the morning
and be really hurting.<span style="mso-spacerun: yes;"> </span>My expectation is
that sleep is restorative, but that does not seem to be the case with
rheumatoid disease. Looks like sleep obsession may also be a common issue for
RA patients. Ho hum, too many things to think about, isn’t it?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Interestingly enough, I am feeling pretty upbeat about
everything in spite of the pain and the shortness of breath. Must be that glass
half full thing going on. <span style="mso-spacerun: yes;"> </span>Tomorrow
should be a fun day.<span style="mso-spacerun: yes;"> </span>I am getting “sprung”
from the house by two girlfriends for lunch and have a date in the evening with
a handsome man.<span style="mso-spacerun: yes;"> </span>Who could ask for
anything more?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Here’s hoping tomorrow is an <i style="mso-bidi-font-style: normal;">exceptionally</i> good day!<o:p></o:p></div>
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Susan<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com2tag:blogger.com,1999:blog-7018348114746626973.post-86327822943374654202016-07-10T08:02:00.003-07:002016-07-27T04:51:51.555-07:00How Does Rituxan Work?<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicLehOPbftBHjpkYioTKlmToB-ZTMivsssz4JgaLdk07YF6NaQJv9DHsc5fSkXg57QBKpGhdV94LUOoL6Bh1K7XQAQY5kmngFIUBeQZ0JtwdC0DDXQjC23TsfyNA0sYv2aZK2ufAmHBFY/s1600/Package_14820.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="139" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicLehOPbftBHjpkYioTKlmToB-ZTMivsssz4JgaLdk07YF6NaQJv9DHsc5fSkXg57QBKpGhdV94LUOoL6Bh1K7XQAQY5kmngFIUBeQZ0JtwdC0DDXQjC23TsfyNA0sYv2aZK2ufAmHBFY/s200/Package_14820.jpg" width="200" /></a></div>
According to <a href="http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Treatments/Rituximab-Rituxan-MabThera" target="_blank">rheumatology.org,</a> Rituximab is used to treat rheumatoid arthritis (RA) that
has not gotten better with other types of treatments. Rituxan is usually given as two intravenous infusions, the second one fifteen days
after the first. This is usually repeated at six month intervals. Rituxan works by
turning off a part of the immune system that is not working properly in
autoimmune diseases such as RA.<br />
<div>
<br />
As I understand it, Rituxan is not actually chemotherapy. It
is a type of antibody therapy that can be used alone or with chemotherapy.
Rituxan is a cancer medication that interferes with the growth and spread of
cancer cells in the body. In addition to treating RA, Rituxan is used to treat
non-Hodgkin's lymphoma or chronic lymphocytic leukemia. I read an article recently that mentioned
Rituxan is also in the process of being approved to treat MS.</div>
<div>
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<o:p></o:p></div>
<br />
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Rituximab targets a protein on B cells, which are part of
our immune system. These B cells produce antibodies, which are proteins that
allow the body to remove infectious or other dangerous particles. B cells also
produce chemicals that help other parts of the immune system do their jobs.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br />
People with RA make B cells that do not work the way they
should. These abnormal B cells do not interact properly with other parts of the
immune system. This autoimmune response attacks a person’s own body even if
there is no infection. Autoimmune responses can result in a number of different
symptoms, such as inflammation of the joints (arthritis), with symptoms of
joint pain, swelling and stiffness. By temporarily removing the harmful B
cells, Rituximab can help control the arthritis, and can help control
inflammation.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Well, there you have it. I think I get the basics of Rituxan after translating all of the million-dollar words and scientific terms. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Fingers crossed that Rituxan will be a good biologic for me.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Here’s hoping for another good day!</div>
<div class="MsoNormal">
Susan</div>
</div>
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</div>
<div class="MsoNormal">
<i>As this week continues, my degree of sleep deprivation
grows. I have decided to look at the positive side of “longer days, shorter
nights” in order to reinforce that this situation is not always a bad thing.</i></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>Ten reasons why getting less sleep is not so bad. </b> Here
we go.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Getting up early lets you…<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
1. Enjoy the cool temperatures of the early morning.<o:p></o:p></div>
<div class="MsoNormal">
2. See the hummingbirds have breakfast at the feeder in the
dark.<o:p></o:p></div>
<div class="MsoNormal">
3. Drink the first coffee of the day, fresh from the pot.<o:p></o:p></div>
<div class="MsoNormal">
4. Get work done before the household is awake.<o:p></o:p></div>
<div class="MsoNormal">
5. Walk around the flower gardens and watch the bees.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Staying up late lets you…<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
6. Work on puzzles until you can’t write any longer.<o:p></o:p></div>
<div class="MsoNormal">
7. Sit by the window and enjoy the nighttime breeze.<o:p></o:p></div>
<div class="MsoNormal">
8. Snuggle up with kitty whenever you want to.<o:p></o:p></div>
<div class="MsoNormal">
9. Take a lovely hot shower in the middle of the night.<o:p></o:p></div>
<div class="MsoNormal">
10. Finish those long novels much more quickly.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There you have it!</div>
<div class="MsoNormal">
Susan</div>
<!--EndFragment-->Anonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com2tag:blogger.com,1999:blog-7018348114746626973.post-3810830111571893342016-07-04T03:33:00.003-07:002016-07-04T03:35:46.471-07:00Need More Sleep<div class="separator" style="clear: both; text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQdxJCfVN4VZ66HenDU_nNKG-urQuvYWpMBOacLY_ZTfJugrgxHgKHwoWooNsyORURN-dmv350CQIm-hofHDhPjOYmZz89nkPo-SbryHQlUWq1IpMxvq_Lb7PqDiSt-qcyoAYEeo-9x8w/s1600/Hummers.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQdxJCfVN4VZ66HenDU_nNKG-urQuvYWpMBOacLY_ZTfJugrgxHgKHwoWooNsyORURN-dmv350CQIm-hofHDhPjOYmZz89nkPo-SbryHQlUWq1IpMxvq_Lb7PqDiSt-qcyoAYEeo-9x8w/s200/Hummers.jpg" width="200" /></a></div>
Sure would be nice to sleep a full night’s sleep again. I have been battling respiratory problems for four weeks now, and a good night of sleep is proving to be elusive if not impossible. Falling asleep at bedtime is not the problem. Staying asleep in the wee hours of the morning does not work for me. I am able to sleep for 4 to 6 hours and then I wake up unable to breathe comfortably. Talk about a hard “wake up call”, this would be the one. Nothing like shortness of breath and rib pain to get you up and alert, whether you want to be or not. Add in the pain from an RA flare and you are ready to rock and roll, so to speak.<br />
<br />
Yesterday was a high pollen day here in Colorado, and it definitely irritated my lungs throughout the day. The smoke from the many Western wildfires earlier in the month also got my undivided attention. Guess I am one of those people they are warning when the TV or radio announcer says that the air is bad on a particular day and for people with respiratory problems to stay indoors or at least take it easy. Wonderful.<br />
<br />
I have been doing a lot of research on RA and sleep issues. I have also been trying to find a way to overcome my inability to sleep at night, but to no avail. All of the recommendations for getting a good night of sleep tend to focus on falling asleep versus staying asleep until a reasonable hour. The meds I am taking may also be to blame, particularly the prednisone and the albuterol for dilating my lungs as needed.<br />
<br />
One additional impact of my strange sleep schedule is that I am waking up my husband at these odd hours, too. Even though he is able to go back to sleep, I know that my issues have an impact on his sleep, too. In the early days of this pleurisy thing when I was very ill, I would stay in bed and try to sit up and read or do a puzzle. Bad idea when you are sharing your bed with another person as you are disturbing them. Now I get up and leave the room versus trying to stay put.<br />
<br />
This strange sleep schedule requires me to nap in the early afternoons just to get through the day. I am certain that the nap is not the best idea, but it is the highest quality sleep I am getting right now. Not sure why it is easier to sleep a few hours in the daylight, but there you have it.<br />
<br />
The good news is that I have gotten a lot of work done on my book revision in the wee hours of the morning, sitting here working in the kitchen with a cup of coffee. The cat likes me better, too, since he can come down for a snack in the wee hours of the morning and then head back to bed. The collie thinks I am great as he heads outside when it gets light and enjoys the cool summer morning. Pet brownie points are pretty much my only reward. <br />
<br />
I have also learned that the hummingbirds start feeding about an hour before the sun rises. Still hoping to see some interesting nocturnal wildlife (foxes, raccoons, porcupines, bears, bobcats), but so far no interesting animals have appeared around the house for my viewing enjoyment.<br />
<br />
Any suggestions for extending a short night of sleep into something a bit more normal? I would welcome them.<br />
<br />
Here’s hoping for another good day!<br />
SusanAnonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com0tag:blogger.com,1999:blog-7018348114746626973.post-75183113713766003532016-06-30T16:07:00.000-07:002016-07-04T03:36:29.290-07:00Switching to Rituxan<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKwRGM3EBnFdmtoKq0knc-zezRouw2r_U4ZI9huedhvm6ZUUT0HOCO25Yd_ctdJt8n5zrlfkPrAqrQ6zxjddkHdVVfdjaofpB0rdsZ6OPqxxP1-34YyHBQSL6uMDgl8bcHbDDXrdt_zIc/s1600/Rituxan.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKwRGM3EBnFdmtoKq0knc-zezRouw2r_U4ZI9huedhvm6ZUUT0HOCO25Yd_ctdJt8n5zrlfkPrAqrQ6zxjddkHdVVfdjaofpB0rdsZ6OPqxxP1-34YyHBQSL6uMDgl8bcHbDDXrdt_zIc/s200/Rituxan.jpg" width="200" /></a></div>
<div class="MsoNormal" style="margin-right: -1.0in;">
Okay, let’s take a closer look
at this Rituxan (Rituximab) infusion I will be receiving in the near
future.<span style="mso-spacerun: yes;"> </span>Genentech makes this particular
biologic although it is jointly marketed by Genentech and Biogen. I initially
used Enbrel and then Remicade, but my rheumatologist was unhappy with the
results and is switching me to Rituxan as my third biologic.</div>
<div class="MsoNormal" style="margin-right: -1.0in;">
<o:p></o:p></div>
<div class="MsoNormal" style="margin-right: -1.0in;">
<br /></div>
<div class="MsoNormal" style="margin-right: -1.0in;">
Rituxan® (rituximab) is a
chemo drug that is also used as a rheumatoid arthritis treatment. <span style="mso-spacerun: yes;"> </span>It is used in adults with moderate to severe
RA, and it is given along with methotrexate after another type of treatment,
called an anti-TNF, hasn't worked well enough. I will be taking it with
methotrexate, just as I did with the other biologics in the past. <o:p></o:p></div>
<div class="MsoNormal" style="margin-right: -1.0in;">
<br /></div>
<div class="MsoNormal" style="margin-right: -1.0in;">
I am still recovering from the
pleurisy brought on in part (we think) by the Remicade.<span style="mso-spacerun: yes;"> </span>That will take a few more weeks.<span style="mso-spacerun: yes;"> </span>I deliberately scheduled my first two Rituxan
infusions beginning 4 weeks from now to make sure this very slow healing
process is complete.<span style="mso-spacerun: yes;"> </span>Otherwise, it seems
like a risk to mess with my immune system and have the pleurisy return with a
vengeance. <o:p></o:p></div>
<div class="MsoNormal" style="margin-right: -1.0in;">
<br /></div>
<div class="MsoNormal" style="margin-right: -1.0in;">
Like all meds, Rituxan has some
side effects.<span style="mso-spacerun: yes;"> </span>Some of the side effects
can occur during the infusion itself.<span style="mso-spacerun: yes;">
</span>The side effects range from minor to quite serious.<span style="mso-spacerun: yes;"> </span>At this point in my RA treatment, I think I
am ready to try a new approach.<span style="mso-spacerun: yes;"> </span>As I
wait out the last of the Remicade in my system, I am becoming aware of just how
bad my RA actually is.<span style="mso-spacerun: yes;"> </span>Life in a
permanent flare is not much fun and I would like to be able to be active once
again.<span style="mso-spacerun: yes;"> </span>It is easy to forget how bad you
feel when a biologic is working some or all of the time to help you feel much
better.<o:p></o:p></div>
<div class="MsoNormal" style="margin-right: -1.0in;">
<br /></div>
<div class="MsoNormal" style="margin-right: -1.0in;">
Looks like most folks get their
Rituxan infusions every 6 months or so. <span style="mso-spacerun: yes;"> </span>According to the website, Rituxan has been
shown to provide up to 6 months of symptom improvement from 1 course of
treatment (2 infusions, given 2 weeks apart). Sounds like a long day for this
first infusion, stay tuned and I will let you know how it goes as we get
towards the end of July.<o:p></o:p></div>
<div class="MsoNormal" style="margin-right: -1.0in;">
<br /></div>
<div class="MsoNormal" style="margin-right: -1.0in;">
If anyone is currently taking Rituxan or has done so in the past, I would welcome your comments and thoughts about this medication. Many thanks!</div>
<div class="MsoNormal" style="margin-right: -1.0in;">
<br /></div>
<div class="MsoNormal" style="margin-right: -1.0in;">
Here’s hoping for another good
day!<o:p></o:p></div>
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Susan<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com0tag:blogger.com,1999:blog-7018348114746626973.post-66374081323124409052016-06-27T06:19:00.000-07:002016-06-27T06:23:42.165-07:00Gardening or Sitting Still? <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjk2xygdiAbmfokrcKMMBAxpw21oB1XSrZ5NObJCAk8kh9PUDdhSTwW4VSTK4CFFhtySjy426MtlHb7BpKiQaZwgX9_d7jwujjt2E-9tnJFH-0MUh98NIVZW-hngxSCV_IbGrZAoKsQh2A/s1600/IMG_0553.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjk2xygdiAbmfokrcKMMBAxpw21oB1XSrZ5NObJCAk8kh9PUDdhSTwW4VSTK4CFFhtySjy426MtlHb7BpKiQaZwgX9_d7jwujjt2E-9tnJFH-0MUh98NIVZW-hngxSCV_IbGrZAoKsQh2A/s200/IMG_0553.jpg" width="200" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2XEVLQzEv9xfM4ieBDdZoA8MeBschJh7t4XwpIfi-dcmxoW0QRGL54i5dLuVRUVZ1D-4wsQxuwdq2C1NaJWiGi3ACy-8PC0iK-JDofYeDkVlrCyFU_sOagO3ro6ZP-6pSvcGdYlYqY0I/s1600/IMG_1358.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2XEVLQzEv9xfM4ieBDdZoA8MeBschJh7t4XwpIfi-dcmxoW0QRGL54i5dLuVRUVZ1D-4wsQxuwdq2C1NaJWiGi3ACy-8PC0iK-JDofYeDkVlrCyFU_sOagO3ro6ZP-6pSvcGdYlYqY0I/s200/IMG_1358.jpg" width="200" /></a>Happy Monday! I woke up this morning up at 4 am unable to breathe, so I came downstairs and started working on my textbook revision at the kitchen table. I am still amazed at how gravity and I can disagree. Seems like I can sleep about 5 or 6 hours max with this pleurisy thing, and then it is time to be upright for a while. This is an absolute requirement versus an optional requirement. Plus it would be rude to lay there gasping for breath and wake up my soundly sleeping husband. I know I am his major sleep disruptor these days, so I try to keep the disruptions to a minimum. It can’t be easy being on the other side of this RA equation. The scope of the challenges this chronic disease brings into your family life is remarkably large and complex.<br />
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Seems like this is the absolute slowest recovery ever. I can’t walk more than 10 steps without having to pause and catch my breath. I can’t bend over to pick things up. Going down the stairs is okay but coming back up is a challenge. Wonder how we will know when this is over with and the Rituxan infusions can start without additional risks to my health and especially to my lungs? This could take a while. Pleurisy plus major RA flares equals no fun. I am officially an invalid for the foreseeable future. No fun and actually a pretty lonely existence when you are used to being out and about.<br />
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As I sit here typing, I find myself wanting to go outside and work in the flower gardens. Danny has been watering and weeding for me in addition to his other yard chores, such a sweet man. Guess I am lucky that my Colorado flower beds are mature and forgiving of my neglect. My best friend Peggy came for a visit with the “sicky” and spent time planting some new Bachelor Button plants for me where the voles ate everything during the winter. Alas, no gardening for me today or probably in the foreseeable future. I can’t bend over and breathe well at the same time, at least not yet. <br />
<br />
Here’s hoping for another good day!<br />
SusanAnonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com2tag:blogger.com,1999:blog-7018348114746626973.post-36260866388442604962016-06-25T07:25:00.002-07:002016-06-25T22:21:58.045-07:00There is No Cure for Rheumatoid Arthritis<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuhZa4Vbl0RiChcflpS69S-FM-xRoKkIgG8IOGv97dTe-Vdnbg_NF-wFj1EkM7IQZrx1mLDzCASYSAZnMsadO-ahGSfqfCiGZFIaO38r8jzq3fWfeWaMrAmNRi515Qdq4scC4-dX7Ntg8/s1600/IMG_1440.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuhZa4Vbl0RiChcflpS69S-FM-xRoKkIgG8IOGv97dTe-Vdnbg_NF-wFj1EkM7IQZrx1mLDzCASYSAZnMsadO-ahGSfqfCiGZFIaO38r8jzq3fWfeWaMrAmNRi515Qdq4scC4-dX7Ntg8/s200/IMG_1440.jpg" width="200" /></a><b>Lather, rinse, repeat: There is no cure for rheumatoid arthritis.</b> The disease can be managed across its many ups and downs, but it never actually goes away. Up until my recent bout of shingles and pleurisy, I was actually doing really well with my treatments. Better than I knew, actually. It has been two weeks and I still can’t breathe well or do much of anything besides sit, read and rest. Even talking can be challenging, sigh. I have enjoyed being one of the few patients who takes the stairs up and down to the rheumatologist’s office on the second floor of the medical building.<br />
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I read an article with a recommendation for RA patients to do the things they want to do NOW since you can’t be sure you can do them later on. Seems like good advice to me. I started a hand-pieced English Paper piecing quilt project called La Passacaglia several months ago for this very reason. Not only is it a gorgeous quilt, it is pieced and then quilted by hand. I have had no difficulty with hand or machine sewing, at least not yet. Funny enough, I can’t knit very well anymore. The stiffness and soreness in my fingers makes my motions very rough and the resulting knitting looks like the collie chewed on it for a while.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhan2JNrX89Gto8o-LuTgWxTKIbearh_FCS6osJb1BsD4AhhThNVWQuyIESj9XMXLJGyq5ykAzITEJ6ufgHt0sfkeoHgUFc95BmUXRrfPMgtzCih5aCAZpSa-Xi578uwjCNXm36AbdK03s/s1600/IMG_1451.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhan2JNrX89Gto8o-LuTgWxTKIbearh_FCS6osJb1BsD4AhhThNVWQuyIESj9XMXLJGyq5ykAzITEJ6ufgHt0sfkeoHgUFc95BmUXRrfPMgtzCih5aCAZpSa-Xi578uwjCNXm36AbdK03s/s200/IMG_1451.jpg" width="200" /></a></div>
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My hope is to finish this quilt and begin a second pattern, but I guess you never know. Even on a good day, I am a very slow sewist. The limitations and pain can really impact doing the things you like to do, can’t they? The thought that striving for “good enough” may be the best that you get can be quite discouraging. On the flip side, maybe “good enough” is exactly what it says - good enough to get you through your days and keep you productive and happy. Qui vivra verra, I guess.<br />
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Here’s hoping tomorrow is another good day!<br />
Susan</div>
<span style="background-color: #bd081c; background-position: 3px 50%; background-repeat: no-repeat no-repeat; background-size: 14px; border-bottom-left-radius: 2px; border-bottom-right-radius: 2px; border-top-left-radius: 2px; border-top-right-radius: 2px; border: none; color: white; cursor: pointer; display: none; font-family: "helvetica neue" , "helvetica" , sans-serif; font-size: 11px; font-style: normal; font-variant: normal; font-weight: bold; left: 26px; line-height: 20px; opacity: 0.85; padding: 0px 4px 0px 0px; position: absolute; text-align: center; text-indent: 20px; top: 342px; width: auto; z-index: 8675309;">Save</span><span style="background-color: #bd081c; background-position: 3px 50%; background-repeat: no-repeat no-repeat; background-size: 14px; border-bottom-left-radius: 2px; border-bottom-right-radius: 2px; border-top-left-radius: 2px; border-top-right-radius: 2px; border: none; color: white; cursor: pointer; display: none; font-family: "helvetica neue" , "helvetica" , sans-serif; font-size: 11px; font-style: normal; font-variant: normal; font-weight: bold; left: 26px; line-height: 20px; opacity: 0.85; padding: 0px 4px 0px 0px; position: absolute; text-align: center; text-indent: 20px; top: 342px; width: auto; z-index: 8675309;">Save</span>Anonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com0tag:blogger.com,1999:blog-7018348114746626973.post-56161855804266722222016-06-23T08:06:00.000-07:002016-06-25T05:25:21.688-07:00Whatever Happened to “No Pain, No Gain”?<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYFegz3glIp-gEdc2iwfM3BZA4GOPwey8Y-CbXkdzqICLCLC2pMhNLgeZbXQ2GrNb586r2wIVvRTxclHAy5CH0fI8zVPG-u6M4P_7A1ZZXCpaPtRIkymJioaHm8iO-yUp7QfdtD6fqWjI/s1600/flare+owl.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYFegz3glIp-gEdc2iwfM3BZA4GOPwey8Y-CbXkdzqICLCLC2pMhNLgeZbXQ2GrNb586r2wIVvRTxclHAy5CH0fI8zVPG-u6M4P_7A1ZZXCpaPtRIkymJioaHm8iO-yUp7QfdtD6fqWjI/s200/flare+owl.jpg" width="200" /></a></div>
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This daily pain thing is quite challenging. Right now I am in-between biologics as I try to recover from pleurisy. Transitioning from Remicade to Rituxin is a bit intimidating, but I am willing to make the switch. These are the times when you realize just how bad the unmasked RA actually is and how much it hurts. No fun.<br />
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I have been doing a lot of reading about pain medications and the current push to deny people in chronic pain their pain medication. This “nanny state” perspective where everyone who takes pain medication is an addict is simply ridiculous. It is like saying that everyone who eats will continuously overeat and become overweight. The logic does not hold up for this argument. Some folks (me included) take pain medication so they can function and get through their days. Pardon me, but isn’t that what the pain medication is for? I am NOT an addict, not even close. What are these people thinking?Stay safe, stay warm, stay<br />
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Every time I read an article where some expert says that managing pain is a mental exercise or can be achieved through a change in diet, I think about zapping that person with some serious RA pain for a 24-hour period. Wonder if that zap would change their point of view? Right now I am typing at my kitchen table and ignoring how much my hands and wrists are screaming. My preference is to take pain medication at the end of the day when things seem to be at their worst. I may have to change my preference, though, since this transition period does not follow any rules that I can see for what hurts and when it hurts.<br />
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My mother always tells me that there is a time to be brave and a time to be practical. She is correct, especially when it comes to treating RA pain. Of course, I should know by now that my mother is always right!<br />
<br />
Here’s hoping tomorrow is another good day!<br />
SusanAnonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com0tag:blogger.com,1999:blog-7018348114746626973.post-24706550871034095982016-06-20T08:52:00.001-07:002016-06-27T06:24:11.451-07:00Complications, Complications, Complications<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimttZXBixVl0lh-TRtybyNhNge2e2LOy4fsww6YLxUnZMEN4Oq821BwpxXPq5X90TqkAeanMICZj96i3TnhanvNJxkTa6p3N9lntgrUhlRt9XG2Tf36_W7wMFtWTLhRsVTYWODl5pJCZ0/s1600/IMG_0105.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimttZXBixVl0lh-TRtybyNhNge2e2LOy4fsww6YLxUnZMEN4Oq821BwpxXPq5X90TqkAeanMICZj96i3TnhanvNJxkTa6p3N9lntgrUhlRt9XG2Tf36_W7wMFtWTLhRsVTYWODl5pJCZ0/s200/IMG_0105.jpg" width="150" /></a></div>
Until recently, I felt as though we had my RA under control with Remicade infusions and Methotrexate pills. As a novice science experiment, I did not realize just how tricky the disease could be and the many ways it could come after me.<br />
<br />
After my most recent infusion, I developed a case of shingles, ouch. Now that hurt! I guess the shingles indicated a weakened immune system, and a week later a nasty respiratory virus stepped in to grab me. Two weeks and now I had two illnesses I had missed out on before: pleurisy and the shingles. This is the first time I have been seriously ill as a science experiment, and the doctors think the Remicade and the RA were key contributing factors.<br />
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I never realized just how nice it is to be able to breathe freely and without pain. After three days in the hospital, I came back home to ride out the respiratory issues. It is going to be a longer ride than I thought. The other outcomes from these illnesses is no more Remicade for me. I am being switched to Rituxan after the respiratory issues clear out. Scary, scary, I have watched the folks getting their Rituxan infusions and it seems more daunting then two hours of a Remicade drip. The side effects seem more staggering as well.<br />
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Of course, this means that I will be in a painful state for the next 4 to 6 weeks, taking only Prednisone while the Remicade leaves my system. Having RA flares along with not being able to breathe truly adds insult to injury.<br />
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Here’s hoping tomorrow is another good day!<br />
Susan<br />
<span style="background-color: #bd081c; background-position: 3px 50%; background-repeat: no-repeat no-repeat; background-size: 14px; border-bottom-left-radius: 2px; border-bottom-right-radius: 2px; border-top-left-radius: 2px; border-top-right-radius: 2px; border: none; color: white; cursor: pointer; display: none; font-family: "helvetica neue" , "helvetica" , sans-serif; font-size: 11px; font-style: normal; font-variant: normal; font-weight: bold; left: 26px; line-height: 20px; opacity: 0.85; padding: 0px 4px 0px 0px; position: absolute; text-align: center; text-indent: 20px; top: 18px; width: auto; z-index: 8675309;">Save</span><span style="background-color: #bd081c; background-position: 3px 50%; background-repeat: no-repeat no-repeat; background-size: 14px; border-bottom-left-radius: 2px; border-bottom-right-radius: 2px; border-top-left-radius: 2px; border-top-right-radius: 2px; border: none; color: white; cursor: pointer; display: none; font-family: "helvetica neue" , "helvetica" , sans-serif; font-size: 11px; font-style: normal; font-variant: normal; font-weight: bold; left: 26px; line-height: 20px; opacity: 0.85; padding: 0px 4px 0px 0px; position: absolute; text-align: center; text-indent: 20px; top: 18px; width: auto; z-index: 8675309;">Save</span>Anonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com2tag:blogger.com,1999:blog-7018348114746626973.post-50889130731986497182016-06-19T05:42:00.002-07:002016-06-26T02:11:29.153-07:00What’s Next?<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPLBf8x72SKyWzI_Wp7zZkhl5hVzOhHUJF-zJHXTyyTky99iThWNigSfLoYu0suuE8eqmMDs29uHav94Arc7PC1J3Q-tbC3H94V02mqrRHuWToT2G2-84cYnffCvcR2KjQ0NP4JrQ4uOU/s1600/bottles3.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="112" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPLBf8x72SKyWzI_Wp7zZkhl5hVzOhHUJF-zJHXTyyTky99iThWNigSfLoYu0suuE8eqmMDs29uHav94Arc7PC1J3Q-tbC3H94V02mqrRHuWToT2G2-84cYnffCvcR2KjQ0NP4JrQ4uOU/s200/bottles3.jpg" width="200" /></a></div>
Well, after 18 months as an official rheumatoid disease patient, I find myself wondering just how all these treatments are going to go. One of the biggest helps to me are the numerous RA bloggers out there documenting their own experiences with the disease for the newer initiates into this mysterious cult. Thought it was time for me to join in. Hopefully, I can also add some value to the conversation. I am one of many RA “science experiments” out there, coping with the daily challenges and hoping for a good day.<br />
<span style="background-color: #bd081c; background-position: 3px 50%; background-repeat: no-repeat no-repeat; background-size: 14px; border-bottom-left-radius: 2px; border-bottom-right-radius: 2px; border-top-left-radius: 2px; border-top-right-radius: 2px; border: none; color: white; cursor: pointer; display: none; font-family: "helvetica neue" , "helvetica" , sans-serif; font-size: 11px; font-style: normal; font-variant: normal; font-weight: bold; line-height: 20px; opacity: 1; padding: 0px 4px 0px 0px; position: absolute; text-align: center; text-indent: 20px; width: auto; z-index: 8675309;">Save</span><span style="background-color: #bd081c; background-position: 3px 50%; background-repeat: no-repeat no-repeat; background-size: 14px; border-bottom-left-radius: 2px; border-bottom-right-radius: 2px; border-top-left-radius: 2px; border-top-right-radius: 2px; border: none; color: white; cursor: pointer; display: none; font-family: "helvetica neue" , "helvetica" , sans-serif; font-size: 11px; font-style: normal; font-variant: normal; font-weight: bold; line-height: 20px; opacity: 1; padding: 0px 4px 0px 0px; position: absolute; text-align: center; text-indent: 20px; width: auto; z-index: 8675309;">Save</span><br />
<span style="background-color: #bd081c; background-position: 3px 50%; background-repeat: no-repeat no-repeat; background-size: 14px; border-bottom-left-radius: 2px; border-bottom-right-radius: 2px; border-top-left-radius: 2px; border-top-right-radius: 2px; border: none; color: white; cursor: pointer; display: none; font-family: "helvetica neue" , "helvetica" , sans-serif; font-size: 11px; font-style: normal; font-variant: normal; font-weight: bold; line-height: 20px; opacity: 1; padding: 0px 4px 0px 0px; position: absolute; text-align: center; text-indent: 20px; width: auto; z-index: 8675309;">Save</span><span style="background-color: #bd081c; background-position: 3px 50%; background-repeat: no-repeat no-repeat; background-size: 14px; border-bottom-left-radius: 2px; border-bottom-right-radius: 2px; border-top-left-radius: 2px; border-top-right-radius: 2px; border: none; color: white; cursor: pointer; display: none; font-family: "helvetica neue" , "helvetica" , sans-serif; font-size: 11px; font-style: normal; font-variant: normal; font-weight: bold; line-height: 20px; opacity: 1; padding: 0px 4px 0px 0px; position: absolute; text-align: center; text-indent: 20px; width: auto; z-index: 8675309;">Save</span>Anonymoushttp://www.blogger.com/profile/00860305626250492669noreply@blogger.com1