It has been a little over a month since my last blog, I’m sorry that it has taken me so long to write. I have a goal of doing a blog every two weeks though the last month I haven’t been able to get myself to write.
I have been having a very difficult time with the ‘acceptance’ part of my disease. My personality is the type that initially responds well to things and then reality hits me when things calm down.
I had my 4th injection a month ago and it was pretty remarkable in the regard that the medicine finally started to work. My Dr. told me that it would take around 4-5 to start working and up until I took the 4th one, I must admit, I was very skeptical.
I was in so much pain prior to the 4th injection that I had gotten to the point where I was on bed rest for about a week, just trying to sleep away the physical pain and emotional turmoil. I completely had to stop training; I could not deal with the regular pain of getting out of bed in the morning let alone the pain of trying to train. I started taking Tramadol for a week or so because at one point lying in bed began to hurt. My bone pain and stiffness was mainly in my hands though over the course of two months it spread to my feet and my ankles. I had to start popping my ankles when I woke up because while I slept through the night the ankle became so inflamed and stiff that it completely locked and I could not move the foot on its own unless I popped it loose with my hands (I had to bend the leg back to bring my foot near my bum and then hold my foot with my hand and force it straight, this hurt like a son-of-a but if I didn’t do it, I couldn’t move the foot. So I justified it as a couple seconds of horrible pain that would in turn allow me to move my foot-which was only moderately high pain but I regained my independence so if I wanted to walk, I could).
I lost quite a bit of weight; I imagine that was from the depression, my appetite just disappeared. I felt like a prisoner in my own body and all I could do was cling onto the little faith that survived the pain, hoping my Dr. knew what he was doing and this would all go away. I cannot begin to articulate how difficult it is to hold onto hope when you feel betrayed by your body and at times crippled, unable to do simple things like open a bottle of water.
All in all it is fair to say that I was going through a very tough time. I tried very hard to not focus on how difficult it was getting for me and found some relief (mentally) in posting funny things on facebook and reading about how others are doing with their lives, but not really discussing my own. So I imagine that some will be surprised when they read this but that was just my way of trying to escape the hell, after all, we can be anything we want on the internet, and I wanted to be that person who’s posts made people laugh and feel inspired.
Then I had my 4th injection and the next day I finally started to feel ‘normal’, it was completely mind blowing. When I woke up, I wasn’t nearly as stiff or hurting like I had been. I would say it went from pain that required Tramadol (a 10) to about a dull pain (a 2). I was completely amazed and day after day I was feeling increasingly better. It couldn’t honestly have come at a better time. It allowed me to get back on the workhorse and get caught up on my projects.
I dived, head-first 110mph into work. I could finally articulate myself again and I felt like a mastermind. I was able to focus and get caught up on everything. I traveled to Vegas for Interbike, which was the n=biggest show of the year for me and I held up really well. Initially I was very concerned because last time that I went to Vegas, I needed to load up on Prednisone because the climate change played havoc on my body, but not this time. After the third day of the show, I could feel the fatigue starting to kick in and my body starting to ache. I decided that when I got back hoe that I would relax and do a whole lot of nothing for 3-4 days, which is exactly what I did. And I felt better, thought still slightly fatigued.
I received clearance from my rheumatologist to start training so I started swimming here and there, cycling and running just to get my body moving. There was not set training plane or anything, just me going with how I felt. I would swim really light swims (under 800m) and usually did so for 2 days and then took 2 days off. It was going well.
I regained my confidence to get back on my bike, which I love more than I can convey. When I was diagnosed, I took a huge hit mentally with the onset of RA because it made me hate riding. My hands got to the point where shifting hurt and I am so stubborn that I kept riding until I could not deal with the pain anymore thus associating my prized bike with feelings of despair, inadequacy, frustration and the feeling of being defeated.
I finally was able to let go of those harbored feelings and get back on the bike, which is exactly what I did. Packed my gear and headed to Fiesta Island. I mounted and began riding, had my headphones in with the 80’s Pandora station playing. Then I start feeling a weird bump coming from one of my wheels, I stop to investigate, thought finding nothing, mount again and continue, then the bump again. I take the wheel off and attempt to get the tube out only to royally piss off my hands, which causes me immediate frustration to where I turn to walk around the bike and fall over the bike, scraping the inner part of my calf. I immediately break down and start bawling. I cannot physically change my tire anymore. My hands just do not have the strength or movement to do it. So after a good cry, I pack my bike up and take it to the bike shop, tell the mechanic what is going on and he fixes my tire (tube was not sitting right inside). Then because I wanted to get ride of the feelings of inadequacy, I went back to the Island and rode, only a coupe laps but enough to regain my dignity.
I have to accept that while the RA is under control, I have new limits. I cannot change a tire by myself, I cannot put on a wetsuit by myself, and probably other things that I have not discovered yet. This is hard because I have always been extremely independent but it is what it is and I have to accept it.
With beginning of physical activity again, I have learned that my muscles do not work the way that they used to in the regard of recovery. The injection that I take to control the RA suppresses my immune system, which in turn delays muscle recovery amongst other things. This is a catch 22 of damned if I do, damned if I don’t but at least the injections allow me to live a normal life, I just have to relearn how to train.
After a couple sessions of play training and maintaining an overall feeling of awesome, I decided to start real training again. Sergio drafted a plan for me at a very basic level, which also factored in my new muscle learning curve. I used to train 2-3 hours a day 7 days a week and now I was at 45 minutes 5 days a week. I thought that was more than doable. I have always been able to adapt very quickly and beat the hell out of my body with a quick recovery.
First real day of training was a 40 min cycling session followed by a 10 minute run. So I cycled on the trainer in the garage, 15 min warm up, 6 1min hard x 1 min easy and cool down. Then 10 min, easy (11 min mile) run. The cycling was great, I felt good. I was very weak from not training for months but I had energy and that was an amazing feeling. The hard setting that I did was really hard for me but would equate to a warm up for normal cyclists. This was difficult to accept for a minute or so because of what I used to be on the bike but I shook it off and gave myself credit for getting back on the bike, after all, everyone starts from this point at one time or another in their life. After the cycling set, I did a quick change into my running shoes and started my run. I got about 3 minutes into the run and my body became extremely upset to the point where I threw up. My muscles went from feeling warm and fresh to cold and painfully tight. It was like I had jumped into an ice bath and everything seized up. My calves started to burn and I started crying. Running is extremely hard on the body and it quickly became apparent that I have a long road ahead of me.
The next day, I had a swim/weight session. The swim went well, though the arthritis in my right shoulder ached, not the RA ache, just the joint limitation ache. When I went to do my weight set, it was literally nothing of what I used to do. I used to squat 100lbs and now I could only squat 20lbs. It burned and I could only do 8, of 1 set. My body just could not handle anymore. Lunges I could not use any weight as they already burned enough from the movement. With my shoulders I could only use 2.5 lbs of 8, of 1 set. (Prior having done 35lbs of 2 sets of 12). You get the idea.
Then that night, my body just felt wrecked, my first flare in over a month was coming on and the miserable jerk was emerging in my personality again.
When I am in flare, I cannot be around anyone. It hurts to simply lie in bed; the throbbing bone pain is enough to turn me, an otherwise very happy person into a flustered pessimist. I mentally cannot see anything positive. It is like a cloud of darkness comes over me and I become very insecure, angry and jealous. I’m still learning how to deal with these emotions, as I know they are not healthy.
So it became hauntingly apparent that if I did not train, I would be pretty much normal again, and if I did train at this early in treatment that I would lay the groundwork for a flare. Most people would be thrilled, and I am, but I love training and racing more than anything and I am not willingly to give it up, period. Not an option.
I somehow got the idea in my head that if I increased the injections maybe I could handle the training better? So at my next appointment I asked my rheumy and he said that no, it would not make a difference, and that it is best for me to slow down at this point. I started crying, (seem to be doing a lot of that lately). He said that he believes that I can get back to training and racing, I just need to give myself more time as I have only been in treatment for 4 months. 4 months seems very short but when your life revolves around training and racing it is a damn eternity and I have never been one gifted with patience.
My rheumy said that I am a very unique case for him; He has never had a patient in 20+ years that (1) was/is a competitive athlete that is aching for her life back and (2) is as determined as I am to get back to racing, nonetheless relentlessly putting myself though a painful learning curve to get there.
He said that I would be back racing in time, so I am holding onto that with every inch of my being and learning what this ‘patience’ thing is in the meantime.
I’ve been flustered the past week, as I think some of you have seen. I am caught in a mental state of hating my body and feeling betrayed. It comes and goes, and with this time, it hit me hard and I am very much trying to cope and get myself out of this fog. Though easier said than done.
I had my 6th injection yesterday and while I have not had any prior issues in injecting myself, I lost my shit yesterday. I am harboring so much anger and frustration which in turn creates anxiety, that it made giving myself an injection impossible. The injections sting and while I know they have essentially given me my life back, it was more than I could mentally handle at the moment. So I layed in bed, anxiety ridden trying to give myself the shot for about a half hour and then finally I bit the bullet and did it, but to no avail.
With the injection device, it is an automatic shot, meaning that I press a button while I hold it against my skin then it pricks me and shoots in liquid for about 10 seconds. So I got the shot through the initial prick but the transfer of liquid for 10 seconds was to much for me and I ended up dropping the device, thus losing all the liquid. I was so upset and just all around devastated and defeated, again. Also felt like a complete idiot because my injections are $1,300 each. Yea, that was just a waste of that much money. FML, so I go down stairs and open the door to the garage where Sergio and Glynn are riding on the trainer, and at this point, I couldn’t really communicate other that crying and making hand gestures, Sergio immediately jumps off his bike, hugs me and holds me, which was exactly what I needed. I then mutter what happened and he says it’s okay, he will do it for me.
So we get another device, I lay on the couch and he alcohols a spot on my stomach. I was okay until he held the device to my stomach, then once he did that, I started bawling again and finally started blurting out all the stuffed feelings. ‘This is bullshit’, ‘I hate my body’, ‘I don’t understand’, ‘I don’t like how angry I am or who I turn into when I’m in pain’, ‘I can’t do this’ and some incoherent mumbles. He starts being Sergio and helps me calm down to the point where I stay still enough for him to inject me.
I’m not sure why this turned into a huge situation. The injections are uncomfortable but not enough to completely protest them. I suspect that it was my nerves being shot and feelings of being overwhelmed.
I’m still very overwhelmed and it is taking everything for me to write this because I am so angry that I do not want to even acknowledge that this disease exists, let alone that I have it.
I was supposed to do a radio interview yesterday about being an athlete with RA but I didn’t do it. I need to process and cope a bit more before I can start talking about it.
The physical matters from RA sucks, but it is the emotional turmoil of the setbacks and limits that are the most devastating part.
So with this being said, I am going to go swim. I have written this rather dark note, got it out of my system and I am ready again to start building again. I do not talk about the RA stuff a lot outside of this blog as it is very difficult to discuss.
The RA beats me down but one thing I am above anything else is determined. Determined to get back.
“I ran. I ran until my muscles burned and my veins pumped battery acid. Then I ran some more.”