Monday, March 30, 2015

Lupus Cerebritis - One Year In

One year ago this week I had a brain fart. No, I didn't just make a mistake, my brain actually felt as if it farted. I realize now that it was caused by the inflammation in my brain shoving the bones of my skull apart.

So much about my life makes sense now. It all started when I was a teenager and came down with a case of Mono.  Shortly thereafter I started having intense joint pain and seemed to be allergic to the sun. I was referred to a rheumatologist who tested me for juvenile arthritis. I was told I was just having growing pains, which at the time sounded wonderful considering I was only 5'1". Growing pains must mean I'm growing! Sadly I never grew another inch. I spent years with intermittent pain and would break out with sun poisoning if I stayed in the sun for any length of time.


At some point in my twenties I was referred to a neurologist for my pain and fatigue. Only to be told they thought I had fibromyalgia. Both my general practitioner and I agreed right away that wasn't the case.


When I was in my early thirties I was dealing with a lot of stress at work and the pain had gotten so severe over-the-counter pain relievers didn't help at all. I once again was referred to a rheumatologist. He tested me for Lupus and arthritis. The tests didn't show anything definitive so he was pretty much an asshole and basically accused me of wasting his time and being a drug seeker. He prescribed Celebrex. It worked like a charm but shortly after starting it the FDA pulled it off the market because of some potential side effects. I was back to just dealing with the pain.


It was all fine and dandy until one day while making the bed my arm fell off. I mean it completely detached at the joint and was dangling with only the skin and a few tendons holding it together. My labrum, the rubber band like tissue that holds your arm in place, had stretched out and was unable to heal itself. Scar tissue from years of inflammation was removed during the surgery and my labrum was resized to hold my arm on again. It took a full year to recover.


So fast forward a few years and I'm on the farm with my animals living the dream, spending a lot of time outside in the sun.  Only the joint pain is back, I am fatigued to the max, and I keep breaking out with a rash on various parts of my body. I'm popping ibuprofen like candy and trying every skin cream my general practitioner comes up with. Next thing you know I have an ulcer, not surprisingly since I'd taken the maximum daily dose for about twenty years. Then one day at work I'm cleaning out the chicken coop and that shoulder of mine starts to burn like it's on fire. A few weeks, or it might have been months, later while I was bent over the sink brushing my teeth my arm fell off again.


It freaks a person out when you look in a mirror and see your limb just dangling like that, so off to see the orthopedic surgeon I went. Only this time the MRI showed significant arthritis damage in the joint. So much that the surgeon refused to operate and referred me to yet another rheumatologist. I ran down the list of symptoms, she performed the tests, and I fully expected to hear the same thing I've always been told. Instead she said that five percent of people with Lupus never have a positive ANA test. She wasn't sure it was Lupus but she started me on Prednisone to determine if it was an auto immune issue or not. I started eating everything in sight but sure enough the pain and rash went away so we knew it was an autoimmune disease. Eventually I was diagnosed with both Rheumatoid Arthritis and Lupus. My body was attacking itself. The thing is with an autoimmune disease any little illness or injury can set off an immune system response. Your arm falling off definitely sets off a response. I was in a full-blown flare.

Finally knowing what I was up against I spent six months trying different combinations of low-dose steroids, antimalarials and chemotherapy and then the brain fart happened. I can remember that I was driving home from the grocery store. At first it was just a headache, it burned like a sinus headache. Then it started to feel like the top left quarter of my brain had been sliced out and replaced with a brain that weighed twice as much. All the connective tissue in my head was inflamed, you could actually see the inflammation in my eyes. I was prescribed an antibiotic and the burning went away for a while but the pain was still there. We jacked up my Prednisone dose to forty milligrams. I think I gained twenty pounds in a week.


It was time for me to go on an Alaskan cruise, something we had planned for over a year. After getting off the plane in Seattle I starting having issues with vertigo. I wasn't sure if it was the disease or if I just needed to find my sea legs. Either way I didn't let it interfere with my eating. I gained another ten pounds on the boat. Once I returned home it was obvious it wasn't motion sickness. I had vertigo every day for four months. I couldn't think straight and I had involuntary muscle movements. It was difficult to get up and down the stairs or even walk across the room at times. I saw specialist after specialist who ran test after test. At one point they thought it might be MS. I had more tests. It was decided it wasn't MS it was Lupus Cerebritis or CNS Lupus.


What is Lupus Cerebritis? It is a symptom of lupus in which brain tissue becomes inflamed. The inflammation causes swelling of the brain which starts mucking up the central nervous system. Scary stuff and there is no cure, only treatments to lesson the symptoms. The low-dose treatments I had been on were no longer an option. If I didn't do something I was bound to have a stroke or develop dementia. Massive amounts of steroids and other serious drugs were necessary to combat this.  It was time for a full out war on this disease. 


During all of this I happened to tell my Rheumatologist about how my friend with a completely different autoimmune disease started taking the antibiotic, Bactrim, and all of a sudden his autoimmune symptoms were under control. She said at one time it had been used as a treatment for rheumatoid arthritis so if I wanted to try it she didn't think it would hurt. It was a Hail Mary pass. You know what? It worked! Shortly after starting it the burning and the vertigo went away. We don't know why it helped but it did so I've continued to take it at a lower maintenance dose. It was not a cure all. I still had issues with overwhelming joint pain, fatigue and headaches so I started taking Orencia infusions. It immediately helped with the brain fog and I started noticing the joint pain lessen and finally the headaches started to disappear for the most part. We are still trying to find the right medication to prevent further RA damage to my joints, so far the ones I've tried have caused me severe nausea and dizziness, helping me lose those extra pounds. I now believe we are on the right path. I recently discovered flying is still an issue that causes headaches and motion sickness so I will address that at my next doctor visit. 

I have learned to accept that I will never feel 100% again. I understand that the fatigue will always be part of my life now. I get it that my shoulder will never be fixed because of the lupus complications. That doesn't mean I like it. I went from being a highly active person with an obsession with to-do lists to being completely exhausted after just taking a shower. It has changed every aspect of my life. To make things easier we have moved to a one story ranch home with a walkout basement. The stairs we do have are deep enough that I usually feel safe using them. The days I don't I just don't go downstairs. I am not able to work as much as I would like but I am hopeful that continuing my yoga and treatments I will eventually regain some of my strength. 


I spoke to a friend recently who said, "I just hate it that you had to give up so many of your dreams." I hated it too at first. But lately I've started to realize that this has forced me to slow down and appreciate things differently. I've already lived a varied and interesting life. Slowing down now to smell the roses isn't all bad. 


So I guess the moral of this story is if you know of a teenager having joint pain, it's not growing pains. In fact there is no such thing. Normal growth does not cause pain. Keep going to different doctors until you find one that helps. Don't wait in pain for twenty-five years until you are properly diagnosed. And if you are facing a diagnosis of Lupus Cerebritis don't be afraid to throw that Hail Mary pass. You might be pleasantly surprised. 


Monday, October 6, 2014

Coverlet College

I had the opportunity recently to visit The National Museum of the American Coverlet to view the Kaleidoscope - Simmermaker exhibition and participate in their Coverlet College.


John Simmermaker, a fellow Hoosier, is an avid coverlet collector and many of the coverlets in his collection were made by Indiana weavers. My personal favorite was by D. I. Griggs, the featured weaver of the year. This one makes my heart go pitter patter.


The geometric design of the center combined with the fancy border makes me think of a quilt with an appliqué border. The dark indigo looks almost black.


But what I really love is that he carried the red plaid through the border and placed the birds and the separating leaf in just the perfect spot - everything about this coverlet is symmetrical. I am a huge fan of symmetry. Okay, okay, I'm anal about symmetry. I might even be close to OCD about symmetry.


I fell in love with D. I. Griggs as I viewed his collection because we clearly shared that passion.


Oh, what I would give to sit next to him while he sat in his weaving chair to pick his brain. Notice the same bird border in another one of his coverlets behind it.


The two day course consisted of a combination of lecture and close study of actual coverlets.


I learned a great deal more than I ever anticipated. We covered everything from weave structures and loom mechanics to fancy fringes. There were so many lightbulbs going on in my head you probably could have landed a plane by them.


I was even able to finally learn what my 10th great grandfather meant when he willed his "loom and half the gyrs" to one son and "the other half of the gyrs" to the other son. Seems he owned and worked a draw loom and the extra shafts, connecting ropes and reeds for a particular damask pattern would have been stashed on the wall and collectively would have been referred to as "the gear" for that pattern.

Of course, now that I know that I want a draw loom. Then I could make a replica of the D. I. Griggs coverlet.

Wednesday, July 30, 2014

How Many Miles of Yarn Can a Spinner Spin?

That is the question I hope to answer by the end of the day once I measure. It was a successful Tour de Fleece. I know I have spun a tremendous amount of yarn, yet I still have a few singles to ply before I can calculate a total yardage. All I know for sure is that I made a huge dent in my fiber stash and that's a good thing.



There was a lot more going on around here than just spinning during the tour. While walking off a large lunch one afternoon I found a set of antique quilt blocks that had never been assembled in a local shop. Still feeling inspired by the Chicago quilt show, I had to have them. The humble but charming blocks had been made of old men shirts - you can still see some of the seams. I sewed them together, added a pieced ticking backing in the form of a giant nine patch block and tied the whole thing together using my homespun yarn. I think it looks like a little boy's crib quilt.


I also couldn't stop thinking about the wonderful giant cutting table my friend Karen had ordered during the quilt show. Having a huge top to lay out projects is a wonderful luxury. As I sat there in the studio one day I had and idea. What it I pushed two furniture pieces together and just put a piece of plywood on top?


Look at how well they fit together. It was like it was meant to be. I love it. And when I tied that crib quilt I didn't have to crawl around on the floor to do it, which makes my shoulders and knees very happy.


Saturday, July 19, 2014

Prairie Pursuits Series of Workshops

Hey, for all of you who keep saying you'd like to learn how to do some of the things I do, there are workshops coming up at Conner Prairie. Go ahead and sign up! There are other workshops than what I've listed here such as blacksmithing and pottery so go check out the website Prairie Pursuits Workshops 2014 Schedule.

Prairie PursuitsSeries of Workshops
2014 Schedule


Prairie Pursuits offers how-to workshops geared to adults in a variety of topics, from historic trades, to culinary skills, to the arts. Browse the offerings this season and see what new skills you can develop on the prairie.
Call Guest Services at 317.776.6006 for reservations or register online atwww.connerprairie.org.

Beginning Weaving - Four Harness Loom
August 23 & 24: 10 a.m.-5 p.m. (both days)
$185 ($175 Conner Prairie member)
This class will focus on designing, step-by-step warping and weaving an attractive wool scarf on a four harness floor loom. Includes all materials needed for the class. Ages 14+

Basketmaking - Make a Kentucky Egg Basket
Wednesdays, October 18: 9 a.m.-5 p.m.
$145 ($135 Conner Prairie member)
Learn the basics of weaving an attractive and practical Kentucky style egg or melon basket. Using eye and rib construction, the fundamentals of weaving a basket of reed will be covered. All materials included. Ages 14+

Wool Spinning
Saturday, November 8: 10 a.m.-3 p.m.$
90 ($85 Conner Prairie member)
From sheep to spun wool- You will find it all in this class. Learn to wash, card wool and spin it on a drop spindle. Then try you hand spinning on a modern treadle wheel. All materials included. Students will get a drop spindle and a bag of wool to take home. Ages 14+

Sunday, July 13, 2014

Tour de Fleece

It is that time of year again where spinners across the globe gather in clumps and even more often in the privacy of their own homes to compete or at least just do a little spinning each day. I fall in the latter category. The tour coincides with the Tour de France running July 5 through July 27. Just like the "real" tour there are rest days and challenge days. I am on Team My Favorite Sheep.


Just like the cyclists in France, you need the right equipment in order to truly compete. It is all about the technology. It just so happens I recently had a birthday. My dear husband gifted me with this beautiful great wheel and so far she and I are off like a heard of turtles. (Picture me with a wide-brim hat riding a three-wheel tricycle with a flowery basket hanging in front of the handle bars while all the streamlined cyclists whiz past me.)

They are really hard to find in good working order around here so he has been looking for years. We had even been considering taking a trip to the East coast where you can find them more often. All along I thought it was interesting how willing he was to try to find one. I mean he's always supportive, but not necessarily "actively" supportive. Once we were home and setting her up he admitted he wanted one because his grandmother had one in an old home in Harbor Grace, Newfoundland where he visited as a child. So it has been decided the wheel's name is Beatrice, aka Be Be, in honor of his grandmother. It is fitting given that my cherry Norwood loom is named Lula in honor of my own great-grandmother who's maiden name was Norwood.

I am making good progress and hopefully will continue to do so. I'm not competitive at all, for me it is just therapeutic work that in the end results in something beautiful and useful.


Sunday, July 6, 2014

Finish What You've Started

I have a list a mile long of projects I want to start. Things I want to make or do. However, I also have a list a mile long of things that need finishing. The guilt of those unfinished projects has gotten the better of me lately. I've been whacking away at that list like a woman searching weeds for snakes.

First off, I quilted and bound my small pile of doll quilt tops. All of the patterns are by Kathleen Tracy at A Sentimental Quilter. I plan to use these to decorate the guest room at some point in an antique toys theme. I still have more kitted up and another needle turn appliqué already finished to add to these but I plan to hand quilt that one which can wait awhile.







I also needed to get a housewife made for my son. The sewing kit kind not the marrying kind. (Although if anyone has any leads on the latter let me know.) He works as a Civil War interpreter and  his uniform needs repaired often so I pulled out some scraps and made this last night. Now that he can sew on his own darn buttons maybe he won't be quite so rough on his uniform. :)



After bringing home the new loom I needed to reorganize Sheville a little. I've been plugging away at filing, sorting and making tough decisions about what can stay and what has to go. I've started loading my Etsy page with quilt patterns, historical costume patterns, roving and whatnot and will continue to do so over the next few weeks. Then, hopefully, I can finally start production on the Tenth Street Textiles projects laying in wait..as soon as I finish taking inventory. *sigh* There's always something.


Saturday, June 28, 2014

Move Over Mildred There's a New Loom in Town

Just when Sheville was starting to look a little sparse along came a deal that I couldn't refuse. I recently met a woman who, back in 2008, thought she would like to take up weaving. She didn't just dip her toe in, she dove head first and bought a deluxe Schacht weaving package that included an eight shaft Mighty Wolf, matching bench, 14 yard warping board, extra reed, raddle, lease sticks, warp sticks, 8 shuttles, swedish bobbin winder, etc. She then wove two or three projects and never looked at it again. This loom is in such like-new condition it still gleams. It was the deal of the century, I HAD to buy it. 


So now I can set the Norwood up to do sectional warping for rugs and large projects, while I use this gem for the lighter weight projects. I'm so excited I might pee my pants if I'm not careful. I think I might need to reduce my liquids intake for a day or two.