Monthly Archives: September 2009

Retrospect

In retrospect, there is a reason for everything. The in retrospect part of that sentence is very important though as in the middle of most difficult situations, they are far too painful, stressful, or busy to realize the “why” behind them. A post by another blogger (Kelly- Rheumatoid Arthritis Warrior) got me thinking about this and I want to share my story of RA at this point, or at least, what it is until now and as best as I can tell it.

My diagnosis of Rheumatoid Arthritis was a long time coming. I started having symptoms, if you really look closely, back in high school. But I started really having problems right after I got married, in the summer of 2006. When you are a newlywed people expect it to be one of the happiest times of your life, but for me it was a more of a steady deceleration. I had been vibrant, busy, active, fun-loving, and the image of energy. Before I got married I was in college (taking 20+ credits at a time in order to graduate in three years), working two jobs, dancing in a church dance ministry that performed for thousands of people, and running. I should mention, one of my jobs was taking care of two kids part time and the other one was horse related- I was an assistant barn manager and I also gave riding lessons, trained horses, and rode my own horse. My life was the epitome of the active lifestyle. In all this, while taking my finals and writing my senior thesis for my English minor and my comprehensive exam for Economics I was also planning a wedding and arranging for a place to live after Matt and I got married. I thrived on being busy. I had some issues. I seemed to have some tendonitis in several locations as well as asthma. The tendonitis was never fixed with physical therapy, and only got worse, but I took lots of nsaids and kept going. That was how I was. Matt and I got married and I started looking for a job in my field but continued to work at the barn. I started to experience more fatigue and pain, but wrote it off to stress. After all, between having one apartment fall through, I had moved four times in 2 months, dealt with a wedding with a highly dysfunctional family, graduated, was trying to make ends meet, and was job hunting, I had plenty of stress.

I got a terrific entry level job in my field rather quickly and though it wasn’t my dream job it seemed a far sight better than cleaning stalls for my whole life (in hindsight, I enjoy cleaning stalls far more but my current job does have better health insurance) and I was quickly on the path to management. But a shadow was coming over me in the sense that my life had rather quickly turned into work, and sleep. I had no more energy for anything else. In the course of two months I went from vibrant to flat. I kept up appearances at work, but unfortunately as soon as I got home I had nothing left. I started having stabbing pain in my hands and elbows as well as nausea and cramping; after a few weeks of this with copious amounts of various forms of pain relievers having no effect, I called my general practitioner.

They drew blood, they poked they prodded, and gave me medications. They did test after test. First it was tendonitis, and the nausea was because I was celiac. So I went on a gluten free/wheat free diet. I learned to bake without wheat flour and found a place where I could buy xantham gum, since baking was one of the few hobbies I had left. I made my own blend of gluten free baking flour that didn’t taste like garbanzo beans, which was actually quite a feat. The one thing I did not do was get better. I continued to see my doctor. He would send me to one specialist after another, and do more tests; it seemed like all of them came back normal. I was starting to feel like it all had to be in my head; I must be crazy, lazy, or some combination of the two. I was gaining weight in all of this as well, going from a very fit size 6 and 145 pounds at 5’8” to, eventually a size 10 and 185 pounds. It broke my heart as I tried to make myself exercise, eat less, do anything to lose the weight, but I was exhausted and I hurt everywhere. The pain was now in my feet, knees, hips, hands, wrists, elbows, shoulders, neck, and ankles. I tried swimming, but even that was too much. I could barely bring myself to get on my old horse and walk around. Trotting felt like a herculean task. Even a little cross rail felt huge.

I received a referral to a rheumatologist. I was somewhat more hopeful that he might shed some light on my pain, since I figured I had to be running out of options. He reviewed my files and spoke with me for a few minutes. He didn’t have x-rays, or even do a thorough physical exam. He pronounced that I had Ehlers-Danlos Syndrome and that I should just live with my symptoms as there was nothing he could do. I felt insane. I read the literature he gave me, but the description of the syndrome I had sounded nothing like my symptoms. I was disheartened and wasn’t sure where to go. I called my general practitioner and he suggested we focus on the GI symptoms for a while and see what happened with the pain; until then he would try various pain medications to try to reduce the pain.

We found out the source of some of the GI problems almost six months later. While doing a test for something else entirely they found gall stones. They also realized that the test that showed I was celiac had been misread; I could eat wheat and gluten after all. I had my gall bladder out and hoped that things would get better. A few things did, but not very much. This time, my doctor referred me to yet another doctor, this time, a rheumatologist in Denver. I asked what good he thought it would do, his only response was that he was completely stumped. After nearly three years he was admitting defeat.

Without much hope, I called the rheumatologist in Denver and set an appointment. I gathered the records they wanted, got x-rays as they asked, and waited. I don’t think I will ever feel such a strange combination of emotions as I felt after that appointment. The doctor reviewed all of my records, all the way back as far as he could. He did a physical exam, took some additional x-rays, and took the time to really talk to me. After all this, he delivered his verdict. He basically said he was surprised the other rheumatologist had said what he did as my symptoms showed, “classic” rheumatoid arthritis. I wasn’t sure whether to be happy that I wasn’t crazy or heartbroken that I had RA. I was numb and hurting and glad all at the same time. He started me on a fairly conservative course of treatment, but one that would take out as much of the inflammation as quickly as possible.

The treatment helped. For the first time in three years I started to feel like me. Not 100% but 25%. With a few more appointments we were able to figure out which drugs worked and which didn’t; this is a continuing process that we still don’t have perfected. But, I lost 50 pounds this year, I started running again, I started riding seriously again, and I feel like I can be there for my friends and family when they need me. It almost felt like coming out of a tunnel where you held your breath the whole time, it was dark, and you got lost several times. Coming out into the light of day and taking a few deep breaths suddenly feels like heaven on earth.

In retrospect though, I see that I learned to face problems head on, at least when I really need to, I learned patience and perseverance, I learned to stand up for myself and trust my instincts, and I learned that I am stronger than I knew I was and weaker than I knew I was simultaneously. I learned that asking for help is not failure and many other things as well; I would prefer that I learned these things a different way. But, even now that I am back to not being able to run because I don’t quite have it in me, I look back on what I have learned and I try to look forward with hope. Because I know that eventually, in retrospect, I will see why I needed the challenges of today to prepare me for tomorrow’s challenges.

I may only be at 50% of where I want to be, but I am working towards getting closer to myself. I don’t believe everything will be ok in this life, but it doesn’t need to be.  So, until next time, RAWR!!

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Monkeys!

I apologize for the lack of posts this week. Among work, barn drama, getting ready for the show, helping Jennifer, trying to make sure Matt keeps up with school even when his English teacher deviates drastically from the syllabus, and fighting off being sick I haven’t really been doing very well at thinking coherently.

 Suffice it to say that my ride on Wednesday was really frustrating but my ride last night was amazing. However, I am trying not to be extremely disappointed right now as no horses in our barn can go anywhere for at least two weeks due to a case of Strangles. That also means the show this weekend will just be people from our barn. At least they are still doing it for us, but it is a bummer.

 My RA has been rearing its ugly little head again this week in the form of my complete lack of immunity to everything. I had a skin reaction to a change in the formulation of my face soap. This caused me to break out, which got infected, which then have put me in the position of fighting off being sick. And not fighting it off very well. I worked through it as best I could and so far have done pretty well; I managed to ride every day so far and still help out Jennifer and some other kids as well as helping out around the barn a little. I am doing my best at living up to what I like to say to Aubrey- RAWR!!! I’m a beast!! Now, if only I could get myself back running again I would feel really accomplished. Well, I am off to the barn to get ready for tomorrow and to help Tom and Jennifer get ready. So, until next time, RAWR!

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Preparing…

My focus this week has been on getting ready for the dressage show at my barn this weekend. It should be pretty fun and a little different than the average show as not only is it a costume show but also all the boys are doing it too! My husband Matt, my brother Cyrus, and Tom (my sister Aubrey’s BF) will all be riding in Intro test B. It should be pretty fun to watch.

 Thankfully Strider seems to be feeling fine now- I think his problem last week was a sore muscle as he recovered in a few days with no ill effects. Luckily I was able to get his feet trimmed on Saturday since that usually makes him a little sore for a day or two as well (not my farrier’s fault I promise- he has done wonders for Strider’s feet and his being a little sore after trims has been improving over time.) and he was initially scheduled for Thursday evening which would have made him sore right on the day of the show probably. I rode him last night and he was amazing! He was still a little tender in his feet (I could tell if we hit a thin spot in the footing) but he was really wonderful considering that he hadn’t been ridden in four days and he normally has no more than two consecutive days off (he doesn’t do well with lot’s of days off in a row).

 I also experimented with a different saddle last night. I have been riding in a borrowed Prestige Top Dressage and it fits Strider beautifully and is amazingly comfortable. However, I have been struggling a lot with my leg position lately and that is somewhat atypical of me. I am not saying my position is flawless; not by a long shot, but putting my leg forward is not a common issue. Looking down or tipping forward are very normal for me, putting my lower leg too far forward is not. I noticed that I had less of a problem keeping my leg in the correct position when I rode my friend’s horse in her Frank Baines saddle with a much flatter knee block, so I obtained a Wintec Isabel to try on Strider. I tried it with some trepidation as I hate CAIR due to it completely not working when I tried a Bates jumping saddle. It was so frustrating. But, I figured it was worth a shot. Miraculously, not only did the saddle seem to fit Strider really well, but I was also quite comfortable and was able to keep my leg in the correct alignment very easily. It was wonderful. It was easier to sit back and feel my center and keep my shoulders back. I really noticed the difference when I tried a leg yield in the trot- I felt the alignment and Strider’s movement more and even on the first try he really didn’t fuss at all. Amazing what happens when I ride correctly. He still had some moments. We are still really struggling with our stretchy chewies, but we did finally get a really good one at the end of our workout last night. Overall, it was a relief Strider was feeling better and trying the different saddle, though it complicates my decision on buying a new saddle, gave me good information.

 Jennifer did well riding Vanya last night as well. After her recent breakthrough on Dundee she has realized the importance of gripping the reins but being loose in her elbows and it has helped to quiet her hands and improve her ability to get contact and communicate with more subtlety. She is doing very well at getting him to engage his body more and bend in the walk and trot. The canter is still a work in progress, but she did realize how to get him more forward so she can start asking for the bend and get him a bit more balanced as well. He is a very steady horse in many ways, but also can be very challenging as not all of his past training has been correct (raises hand- that would be my fault. I plead innocence based on mental incompetence as I was only a child). Jennifer is really doing well with him considering that he really isn’t actually trained for dressage at all. I also noticed a huge improvement in her level of patience with herself. If she didn’t get something right first try, she simply quietly kept at it. She didn’t get annoyed or uptight and she was even relaxed in her body, so it wasn’t just an external lack of frustration; she is actually internalizing what she is learning about riding each moment and not holding on to past mistakes. It is so wonderful to see her happier and les frustrated when she rides. I am hoping she gets some better scores at this show that can represent all this work and progress she has made.

 I am not telling what my super cool costume will be for the show; I will post pictures afterwards. I will leave you in suspense until then. I have a lesson with Jo tonight and am super excited for that. My husband and Jennifer are still on the lookout for good ideas though (that are easy and affordable) so please feel free to comment if you have any ideas (or comments, thoughts, snide remarks etc.). Until next time…RAWR!

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Bravery

Today is an excellent day to reflect on bravery. While reading Kelly’s blog (rawarrior- see my links) I encountered this wonderful young woman’s story. Please check out the first chapter of her book as she is a profile of courage, bravery, and hope when faced with Rheumatoind Arthritis and numerous other complications.

Here is a brief synopsis:

            Diagnosed with Rheumatoid Arthritis at the age of seven, Nicole Bradshaw from Sydney Australia has always “lived her best life”. By her early thirties, she was happily ensconced in a world of family, friends, fun, travel and drugs (all legal of course!). Over the years, her life had been interrupted by numerous joint replacements, fusions and reconstructions, or by a blood clot from her ankle to her groin. But life was good. She had it all under control, or so she thought. Suddenly and when she least expected it (like you ever would), her head fell off. Just like that!

            Nicole had a basilar invagination – no, not a condition described in a gynaecological pamphlet! A basilar invagination occurs when the odontoid peg (that’s the little peg your head sits on) moves up through the base of your skull. Nicole’s did just that, and was touching her brain stem and spinal cord, causing her to lose strength in her legs and arms and feel indescribably weird.

http://hasmyhaloslipped.com/

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The Beautiful and the…

So last night was a mix of the beautiful and the frustrating.

I went out to the barn thinking life was good, all was right with the world, I had a lesson scheduled with an amazing trainer for today, had everything arranged and was going to be organized and ready. I also had found out that Jennifer would be able to take Vanya, my older gelding, in a pair pace coming up. Everything was just wonderful. I did some planning with some people at the barn for the pair pace and the upcoming show, and went and caught my horse. I admit it stresses me a bit when I have more than one person who wants to ride Vanya in a night, and that was the case again, but I determined a course of action that made pretty much everyone happy (Nicole can ride him bareback while Jennifer works her other horse and then Jennifer can ride him).

I caught Strider and got him tacked up. He was being super affectionate and sweet and as I looked over him when I groomed him everything was great. I took him in to start lungeing him though and as soon as he started to trot I noticed he was a little off. I though he might warm up out of it since he has shown stiffness before, so I did some stretches with him, gave him some more walk time, and then tried again. He seemed a little better, so I asked for a canter. He seemed alright, then he came back down to a trot and it was back. He was off again. I stretched him a bit more and then walked him around mostly on a loose rein since he was very comfortable with that and it seemed to make him happy. I then put liniment on his legs and put his standing wraps on and let him hang out in a stall with his hay bag while I went to help Jennifer.

While I was worried about Strider, Jennifer was having a horrible time with her horse, Dundee. I had suggested she try a flash on him, since I had seen that he liked to gape to avoid the bit. I helped her put it on and made sure it was still pretty loose. His bridle is actually too big for him I noticed so both his nosebands were actually pretty loose, so he wasn’t being overly restricted by adding the flash. However, Dundee definitely wasn’t too excited about this. He was walking and trotting around looking more like a giraffe than I had ever seen a horse look. I could tell Jennifer was trying as hard as she could and doing her best and as I lunged Strider I was trying to giver her help on what to do to help him listen and relax. It was all to no avail. By the time I was done with Strider Jennifer was incredibly frustrated; with good reason. I got on Dundee and got him walking forward on a 20m circle and asked him to relax and bend to the inside and accept contact. It took him a few circles, but he finally did. I had him maintain the contact for a time or two around the circle and then changed direction through the circle and did the same thing going the other way. I really applied what I had learned from my lesson with Jo and focused on staying centered, relaxed, and breathing. Once I felt he was listening, I had Jennifer get on again.

At first she still struggled. I coached her to what Jo had explained to me. Focus on center. Relax the shoulder but sit tall. Follow with the hips. Still Dundee ignored her requests to bend and give and accept the contact. She kept at it and I reminded her to consistently focus on just what she could directly control and each individual moment and to breathe and be patient with Dundee; trust that he would eventually listen to her. I explained that she couldn’t impose her timeframe on the horse: she wants him to accept contact now but he will do it when he is ready. Finally she understood. She was still frustrated and was on the point of giving up. Suddenly, Dundee relaxed and accepted the contact and softened and bent. It didn’t last long, but Jennifer was puzzled. She said she wasn’t doing anything at all. She asked him to do what she wanted again. More resistance. When she relaxed and just followed his motion but maintained contact and stopped asking, he accepted the contact and softened and bent. She was baffled. She wasn’t doing anything she repeated. Of course not. Sometimes, when we need to get the most done with our horses, we struggle, we ask, but we have to quiet ourselves and let them be and just ride them as best we can. We may feel like we are doing nothing, just following them, but that may be all we need to do.

It was an important realization for me and for Jennifer. Sometimes, you may not feel like you are doing anything or getting anywhere, but if you are centered, balanced, and following the correct lead, you will achieve what you need. An interesting thought.

I admit I am still really frustrated about having to cancel my lesson for Strider being off, but I don’t want to push it. After had the wraps and liniment on for a bit he was improved but I m worried about him. He has had off days before; it is probably because he is about due for his next trimming as I cannot locate any heat, tenderness, or swelling anywhere, but it still worries me. We’ll see. Since Jennifer had to go, I hopped on Vanya bareback and just enjoyed being with him. He is such a joy and he teaches me still every time I ride him. So, even though last night was frustrating, it was beautiful in many ways- I learned a lot.

Hopefully tonight will be a night I can apply what I learned without the frustration. We’ll see. Until next time…RAWR!

 

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Good Times…

Sometimes things just seem to go your way. The last few days have been that way for me. Not to brag or anything, but really, it’s been pretty awesome if I do say so myself. So why exactly has life been so good? I’m glad you asked!

We had a dressage show on Saturday, and I started off very tense and stressed and had a bit of a rough time. However, I had gotten some help in the form of eyes on the ground and some instruction in riding my tests correctly (Oh, you mean the curving line in the canter in First level Test 4 is supposed to be bending in the direction of your lead, not changing bend like a nice hunter line!?) so I did my best to just chill and quickly get past it. It must have worked, because though we were tense on our first test, First Level, test 1, we got more relaxed as the test went on and it wasn’t awful. Our next test, First Level, test 2, was even better, but still needed more relaxation, but overall I was happy because we got some trot lengthen, some canter lengthen, and decent leg yields, which those three things have been to some extent the bane of our tests from day one. Though I should remind myself that day one wasn’t that long ago. I rode my first Dressage test on Strider in August. His leg yields, though gorgeous as far as crossover, have a tendency to be overbent and they were much better on that this time. So, a little more relaxed and getting happier by the minute, we moved on to First Level, test 4. This was our first attempt at it in a show, and only our second time riding through the whole test as I hadn’t been able to memorize it and hadn’t had anyone available to read for me. It was amazing!! It would have been our best score of the day, and as it is it was close, if we hadn’t had a jig in our free walk. I have to say having a jig in the free walk is super weird for Strider too, but overall I was still very happy. After our test the judge told me she thought I was doing a good job riding a “difficult horse.” Though I disagree with that characterization of Strider, I appreciated the comment very much especially as she had not been as complimentary to some of the other riders in my level and above. I was super excited! Our scores, though still not at my goal of consistently above 60% are getting more consistent and much closer to that level. I am very interested to see how we do at the show on September 19th after some lessons.

 On that note, the next exciting thing that happened was I got a lesson! Jo, from the Tapestry Institute (http://www.tapestryinstitute.org/horsehuman/riding.html), came out to my barn to give me a lesson and I had a great time. She really worked on my position and helped me to relax and breathe, (You mean I should breathe more than once every ten minutes when I ride? What a novel concept!) and I could feel the difference it made in Strider’s movement and suppleness in even just a few minutes. It’s not magic, and I may not agree with everything Jo believes, but I appreciate that her goals for the horse and rider are to work as an effective team and she really needed all the help it could get! I hope I can get more lessons in with her as I think it will help Strider and I in the suppleness and relaxation element that I struggle with so much.

I also sold my boots that I hate, loathe, and despise. Don’t get me wrong- they are not bad boots; they were amazing and they are the closest boots I have ever had to fitting me. But, they were not very comfortable, especially not after I lost 50 pounds and my claves shrunk. So, I sold them to someone who needed them fairly badly for RMDS Championships as her boots were not comfortable for her and were not broken in. These should be far more comfortable for her and are somewhat broken in. I now can go on the hunt for boots that actually fit me. Weird. The amazing thing is I hadn’t even put my boots for sale. Now if only I can sell my two extra saddles that way!

But for now I am basking in the glory of good things and remembering how wonderful it felt when Strider really relaxed and loosened up….I love good rides! I can’t wait to get out and ride tonight! Until next time: RAWR!

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She Shoots- She Scores!

 Ok, so not quite…I have never played basketball, or soccer, or anything like it in my life. If the game involves a ball, I probably can’t play it, I seem to be magnetized to balls; by that I mean balls repel me. Where the ball is, I won’t be. That doesn’t work well except for dodge ball. But, in order to “get a goal” you have to have one. Therein lies the rub.

I look at the girls that ride my older horse, Vanya; they both have some pretty awesome goals. Jennifer wants to get to our local Dressage Championships next year at Training level. It is a great goal. It’s achievable as after riding the horse for times she got a score that was within 3% of the score needed to qualify. So, given a few months she should be well on track to get that extra 3% that she needs, and probably more. She is planning how she will reach the goal; what memberships she needs and how much money she needs to save for shows, what equipment she needs, and what shows would make sense to attend. She is also taking more concrete action and riding and taking lessons to get the improvement she needs. She has an achievable short term goal of getting a score that would be a qualifying score (60%), and is taking steps to get there.

Similarly, Nicole, who also rides Vanya, wants to be able to show in Jumpers rather than Hunters next year. The lowest jumper division height is 2’3”-2’6” and since I am helping her, I am asking that she be jumping at least 2’9” comfortably at home before she does 2’6” at a show. Again, this is a great goal; she is working hard towards it and making good progress. She rides every chance she gets and is putting in the work she needs to achieve her goal. In fact, in her ride last night she did a course that was entirely 2’3”-2’6” very well. She even took her first oxer set at 2’3”!

However, I am not doing as well. I would love to improve my dressage scores with Strider, but I don’t really have a clear goal on it. And once I improve my dressage scores at First Level, what then? I don’t have the skills for Second level and I know that (I mean hey, I barely have the skills for First!) I want to jump bigger jumps, specifically I want to get to 4’, but I seem stuck at 3’9” and don’t have a plan to get past that. I want to get more consistent lessons, but again, seem somewhat stuck as far as finding a trainer I am happy working with and can afford and get my horse and I in contact with regularly. I am making more progress on that front than on some others, but still am nowhere near reaching that goal. If I want to get somewhere with my riding I should probably set some clear, well thought out, achievable goals. I am debating trying to qualify for local Dressage Championships at First Level with Strider next year, but can’t make up my mind as Jumping is still a priority. Any ideas? Please feel free to comment if you have any good ideas on good goals as I am open to suggestions.

All that being said, I realized where one of my big problems with RA has been lurking like the glass of milk you forgot in your guest bathroom last week. (You can smell it but can’t for the life of you figure out where it is…get my drift?) My Rheumatologist and I don’t have the same goals. My goals for me with regards to my RA are being mostly pain free most days, having energy, being able to sleep through an entire night without waking up because I have to change positions, and preventing as much joint damage as possible. My measurement of that is simple, do I hurt today? Do I have the energy to ride my horse and go for a run? Did a get a good nights sleep recently? Are my joints popping? Can I set my elbows on a padded elbow rest without pain? Can I stand up after sitting for twenty minutes without pain? Lately the answers to all of these questions have suggested that I am definitely not reaching my goals. I have called my doctor, since he is over an hour away, and talked to his voicemail and his assistants about it. We tried a burst of corticosteroids, we have increased my methotrexate dosage (and can I say that I really wish my hair would stay ON my head?), and neither approach has worked. I told him this and gave him a suggestion provided by my wonderful GP…his assistant simply said, “You will have to wait until your next appointment for the doctor to look at your joints.” Interesting; I admit, the not very charitable part of me wanted to say, “Go hold onto an electric fence for a day, imagine feeling like that all the time, and then tell me I should wait. And I’ll tell the doctor how my joints are- red, swollen, inflamed, painful and stiff.” But, I am not that uncharitable or rude I promise, so instead I said, “Isn’t there something we can do before my appointment?” Basically pleading with her. She said no. So I learned that my doctor has different goals than I do, and that is part of my problem with RA. I plan on addressing this at my next appointment, as I know, not all my goals are entirely reasonable, but at least we could try to get on the same page. And how else can you possibly reach a goal if you don’t set it in the first place?

 So, sorry if today’s post was a bit of a downer, but I hope it might be enlightening…I prefer entertaining, but I suppose enlightening will do the trick. Until next time, RAWR!

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