I had a doctor’s appointment with my Rheumy recently and we talked about how my Raynaud’s is so much worse in the winter time and how I might go about managing it this season. I was using prescription strength Niacin but it only comes with the flush factor so I only take it when I absolutely have to. Anyone not familiar with the flush is that once you take it within about 15 minutes your entire body turns red and starts to feel like it burning, almost like a really bad sunburn. It goes away within a short amount of time but I was very selective when I would take it. I wouldn’t take it before a meeting a visit with a customer and I wouldn’t take it if I knew several people would be seeing me. Basically I only took it when I was tucked in my office for an hour or so. My doctor asked me how long the relief from Raynaud’s lasted once I took it and I told him about an hour. That was not enough time and I agree so we are trying a low dose blood pressure medication. I take it at night since I don’t have high blood pressure I don’t want it to get too low during the day so if I take it at night I’m sleeping and laying down with no fear of fainting and when I wake the next morning my blood is able to flow better all day. In just the 2 weeks I have been using it I can already tell a difference. Even my mother commented that my hands were looking better.
Considering it has already started snowing here and we dropped in the low twenty’s for temperature I am expecting this to be a long cold winter. My hope is that my hands and feet will better survive this winter now that I can take a maintenance medicine instead of trying to fit a medicine into my schedule. Once summer is back I will no longer need to take this and will resume again in the colder months. I still use warm packs, wear gloves and wool socks whenever out and take hot baths whenever possible to keep my body warm. I of course also use exercise as a way to keep my blood circulating but unfortunately these things are quite enough to keep my hands and feet safe from the over powerful severity of Raynaud’s.
Call it jealousy, confusion, anger, or perplexity but that is how I feel today. Every year we are required by insurance company to have our Biometrics done before full insurance kicks in for us. What does that mean exactly? It means that every year we are required to have weight, height, waist circumference, blood pressure, cholesterol, and blood sugar tested on site at our place of employment. These readings are submitted to our insurance company and starting January 1 of the next year we are fully covered if we do this. Before you write me in protest, this is what I have done for many many years and considering I really like my job I do it without resistance. That is not what I’m upset about.
We have a lovely woman in our office that was called out for being the picture of perfect health. Her numbers were all good, great in fact according to these experts in the medical field and I wonder with such perplexity how this can be stated this way. She is 42 years old and her weight is good, she is small, but in the process of being this small she has the “old lady wrinkles” I know you know what I’m talking about. The skin on her face and neck is wrinkled due to the loss of weight and her obsessive desire to be thin. She doesn’t have muscle density so she looks fragile. Her numbers came back incredibly low but her diet consists of grilled chicken, bread thins, pop chips and diet soda every day. Her philosophy on the diet soda is that she doesn’t drink coffee so this is her coffee substitute. She added a banana into diet when weight watchers made fruit zero points and the only green thing she will ever eat is Caesar salad with or without chicken. Her diet is so limited she turns to products such as spray butter to flavor popcorn or her bread thins.
How can this be the perfect picture of health? How can she be touted as the person to follow to live a long healthy life? I don’t want the title of perfect because I am far from it but it is times like this that make numbers, labs, biometrics, and insurance claims so confusing and perplexing. I also don’t want to be considered a judgy bear since who has time to analyze and judge others but I would like someone in the medical field to pull her aside and explain that it is ok to eat, it is ok to try different things even if weight watchers adds a couple of points to them and it is ok to put a little life into living and still be the picture of perfect health.
After 10 years I’m having my first arthritic flare which I am categorizing differently than my regular MCTD flares and I’ll explain why. Having arthritic flares is not uncommon when dealing with MCTD but the damage is more permanent than a regular flare. With regular flares for me they come in fast and leave just as fast leaving me exhausted from pain, nausea and an incredible sense of being knocked in the head hard with bouts of brain fog and loss of words. Now my arthritic flare isn’t like that, instead it crept up in the form of a swollen fingers and toes and over a period of a week I felt my rings getting tighter and my ability to make fists with my hands decreased over a week’s time. That might seem quick to some people but for me that is a gradual symptom I have not experienced before. Swollen hands, fingers and feet are not unusual but not being able to get them back to normal is what is unusual this time around.
I was going to see my Rheumy last week so before I went and had all my rings resized I wanted to see if this was permanent or not. I explained that I have increased my time in the Bikram studio and drinking more dandelion tea in order to get the fluid off and he gave me an unexpected blow that this is not fluid retention but this is an actual arthritic flare in which my tissues are damaged and causing growth in my finger joints. After I had a moment to get over my shock we discussed my options. The most obvious are to increase prednisone yet again and see if that inflammation will decrease, try some different medications all together or move south. The last one might sound like a joke but the truth is my doctor recommended moving to warmer climate and soon. This is a topic that of course pops up from time to time with my husband and me. We do believe our long term plan is to move south to warmer climate but I have strong family roots in Maine and two incredible nephews that I can’t imagine not seeing on a regular basis.
It looks like I’m back to options 1 or 2 again. Trying new medications come with risks; will they work, what are the side effects, what are the long term effects, how will I feel, how will I have to change my current routine, is the medication switch permanent? These are the questions I ask myself and my doctor. Once we establish some of this information it seems the wisest thing for me to do is up my prednisone. I know the effects, I understand the differences and it is not a permanent change, so that is what I decided.
I started taking the papaya supplement but it hasn’t been too long yet so I’m not ruling it out but what I have found thus far is that it hasn’t really helped my hands by my stomach feels so much better. With the medications I take and the damage to the stomach lining I have bouts of nausea and cramps as well as bloating and this has really helped that greatly. They are chewable tablets so it almost feels like taking antacids but they taste way better. I have not need any Prilosec since I started taking them and in general I find them a good supplement to add into my daily routine. Over time if I get relief with my hands I will be thrilled so I’ll keep taking them to see what happens.
A few blogs ago a reader wrote in stating that she has started T25 which is another of Shaun T’s extreme workouts. You probably know him from Insanity workouts and as the maniac man that sweats like no other. My trainer started teaching Insanity classes at my gym and of course this trainer and I have a good energy, great communication and I trust him. Although I was not really sure Insanity was for me I jumped into a class back on Oct 18th and haven’t looked back. I am by far the oldest person in the class, so yes I am surrounded by 20 something men and women that can rock it on a bad day. However, I’m very confident in my ability to keep up so I was not intimated by the people in there. I also need to find my zone and prefer not be near anyone else when I’m working out. You might be thinking that means I’m tucked in the back of the room in one of the far corners. No, actually I go straight to the front of the class. The reason, no one else wants to be there. People will tuck themselves into the back of the room tighter than cattle as a way to “hide” for me I actually hide right out front. I get all the room I need and I’m literally sharing space with the instructor so as you can imagine I also get a lot of personal instruction along the way as well. I can always hear what he is saying, I can see what he is doing, I get to leave a puddle of my own sweat on the floor and not slip and slide in other people’s sweat and yes we sweat. If you are at all familiar with insanity it is just that, total insanity.
We start with a warm up and quick stretch and from there 45 minutes of intense cardio body work. We jump around a lot and although I am capable of jumping, squatting, maneuvering between standing and floor I also find that I need to modify. There is no shame in modifying and I learned within the first class that if you keep moving constantly throughout the 45 minutes it is actually better than giving all you can for 10 – 30 seconds and stopping altogether. Of course he loves when we give it all we can and I do but then I back off when I need so that I can keep a good level of breathing, moving and sweating happening the whole time.
I would say my favorite part of this class is that it is all done in the dark. Not pitch dark because there are windows but dark enough that you focus on yourself and you don’t really notice who is around you or what they are doing. You find your zone, you get your breathing right, you follow the instructions as you hear them and you keep moving. The voice gets loud right about at the end of the 2nd circuit and you really wonder if you can make it but you do. The reason you do is because the energy that the room gives you and the music you hear and the instructions given make you know that this will all be over very soon and you have left the day, the garbage, the words, the sweat, the angst all on the floor in the extremely gross puddle of sweat that is yours to be proud of.
Let’s be honest here for a moment. This is wonderful but it is also extremely scary. I have walked in and out of that class now 10 times in the last couple of weeks and every time I walk in there I feel a sense of insecurity but a confidence that one way or another I will finish. My body isn’t equipped for extreme work, so I’m told over and over but I don’t believe it. I believe this body really can do incredible things, but I also believe I have to be extra careful because an injury for me will not heal the same as an injury for a 20 something. I have taken great care not to injure myself year after year of exercise and even in Cross fit training I didn’t injure myself but I felt like I was pushing the limits of what was best for me. With this class, he trains me separate from the class as well and can really keep an eye on whether I’m doing it right or doing it sloppy and when I start to get tired he just says “focus” that is enough to make me think. Whether he is saying it directly to me or everyone there I don’t know all I do know is that start to focus on my form.
I have many weeks of this class and as I push and pull back and adjust, experiment and even doubt I will write about my experiences because this is a feat that I didn’t think I would take on but here I am and actually enjoying it. Nervous each and every time I walk in there but I keep walking in and keep finding myself at the front of the room staring myself in the face and thanking this body for what it is able to achieve.
We have entered into a new month and unfortunately this month is riddled with daily dropping temperatures, frost, and incredibly dark mornings. I have been creaking and cracking out of bed each morning forcing myself to move this body in some fashion very morning. I know that colder and darker mornings are on the horizon with each passing month and in Maine we have a long time to endure these cold months. However, this is just the start, therefore, the stiffness and soreness I’m dealing with is still bearable but a real reminder what I’m faced with for several months ahead of me. Everything about MCTD is magnified as the temperatures change and although I know that living in warmer climates would help reduce these symptoms, but we are not committed to making that type leap just yet in our lives. Anyone with MCTD that is sensitive to cold knows what I’m talking about but there are also people dealing with MCTD that the warmth does the same thing to them and they actually feel better when the temperatures drop. Science is very specific that when things are warm they swell or expand and when cold they contract. Think of wood as a specific species where this is very prevalent. Now think about your digits, do your digits seem less swollen in the winter time and more swollen in the summer time? For me my fingers are extremely swollen this time of year. I actually increased my prednisone by another mg in hopes of reducing some of the inflammation I’m feeling. Sadly it hasn’t helped and I feel like these hands are more obstacles than they are tools.
As my body shifts and gets more used to the cold weather it will normalize and hopefully these hands will go back to normal. However, I’m also obviously aware that with MCTD there can be real permanent changes that don’t get better and over time the size of your hands and fingers can become bigger causing real shifts that don’t go away. Every year during this time of year I wonder if I’m facing permanent change or a short term dilemma. Either way I keep my hands as warm as possible, increase my use of Niacin, and now I will increase my time in the Bikram studio.
The natural heat of the Bikram studio is not hot enough to cause me to flare at this point and this is the time of year when Bikram is exactly what I need. Ever since I started running again my body is tight. The postures that I used to flow right into and hold so gracefully are complete killers at this point. I feel my hamstrings burn, I feel my knees stretching in pure agony and I feel my hips protest with every stretch I put them through. Granted, they would be tight regardless of running or not based on my MCTD but when I was doing 5 days a week of Bikram I was staying loose most days. Now I have decreased my amount of time in studio and increased my muscle tightening exercises which is causing double tightness. After 90 minutes in the studio I wish I could say I was loose but it takes more than that for me.
I am so worried about flaring in general but really I don’t want to flare at the gym, in the yoga studio or at work. I will be entering the Bikram studio more often in the winter months and watching how I feel and if any signs of flare creep up I will have to re-evaluate yet again. Life is all about daily evaluation with or without MCTD.