It has been a long time since I have given any kind of real public update regarding my health. I try not to spend a lot of time talking about it, thinking about it, or writing about it because I find that dwelling on my problems is not that helpful for me most of the time. I know some people find it therapeutic, and sometimes I do too, but I mostly find that it makes me feel worse. But, I figured I would give a quick flyover of all that’s been going on the last year or so.
Many of you know that I visited Mayo Clinic last year in Rochester, MN. Mayo Clinic was amazing and they gave me a lot of hope about the possibility that this disease (Scleroderma/Systemic Sclerosis) could potentially have been a temporary blip on my radar due to other issues. Since then I have continued to have symptoms such as Raynaud’s Disease (my fingers turn white when they’re cold and go completely numb. Not just pale, but where my fingers look like they belong to a dead body. It’s gross), digestive problems, as well as some newer ones such as dizziness, lightheadedness, and migraines. Thankfully the two rheumatologists I saw out here confirmed to me that a lot of their Scleroderma/Systemic Sclerosis patients suffer from digestive problems because it is a connective tissue disease and can impact any connective tissue in the body. Yay! Unfortunately there just is not a whole lot that can be done about it. They believe that my lack of skin involvement is probably because I’m in an earlier stage of the disease. Most people are not tested for Scleroderma until they present with skin issues. But many of the patients suffer from other complaints for years not knowing what is wrong with them. My chance Scleroderma blood test showed it in my system and now we are (hopefully) keeping it at bay with the standard auto-immune treatments.
Last year in October I had a weekend when I felt so sick to my stomach that I decided to make some dietary changes. I stopped eating gluten, limited my dairy intake, and then paid attention to what I ate more to figure out different foods that triggered a response from my system. So far I’ve learned that heavy foods are a big challenge, most processed foods/sugars, ice cream is a food I will probably never eat again, zucchini makes me miserable and so do potatoes. Caffeine is also not my friend so I limit that as well.
Around New Year’s I was having a lot of problems taking my stomach medication. It was doing its job too well and I started to go off of the prescription. I was able to go off of it completely which was a huge turn for me! This was a pill I had been taking 5 times a day just to function like a normal human being! I stayed off of it and had minimal symptoms for about 5 months. I thought that maybe I had made enough changes to my lifestyle that I had everything under control.
In May my symptoms came back with a vengeance. Whether it was from stress or what, I don’t know, but I knew that this flare up was going to be miserable. I spent most of my summer trying to function through horrible migraines which are new for me. I was at a point when I was taking Excedrine Migraine every day for several weeks in a row and it was barely taking the edge off. It also doesn’t mix well with my stomach medication that I had to start taking again in order to make it through the day. Most of the time I felt like I was in a fog…a dreamlike state. I couldn’t think clearly and felt really irritable. Simple questions and conversations were really challenging. I felt so completely discouraged. The best way to explain it would be to say that it’s like being a drunk person who is trying to sound sober.
The whole summer was pretty much like that and now I feel like I am mostly managing my symptoms. I still feel crappy a lot of the time, but my medication does help to take the edge off, so that’s a good thing. I often feel lightheaded and dizzy, experience a solid amount of joint pain (but no swelling), abdominal pain, extreme fatigue and headaches.
I am learning that I have limitations to what I can do and that has been really difficult. The chances of ever having my own classroom seems so far out of my reach at this point. I don’t know how I would be able to function if I couldn’t lay down at the drop of a hat. Just last week I was in a classroom and the students left for lunch and I felt like I was going to fall asleep. It wasn’t just a little tired. I felt like there were 100 lb weights on my eyes and as if someone had just given me some Vicodin. My brain was so foggy I felt like I could hardly think. My words weren’t slurred by I had to work really hard to form sentences. I told Josh that the aide in the classroom probably thought I was on drugs. So letting go of the dream of being a full-time teacher is something that I’m working through right now.
I’ve also had to make a lot of either/or decisions and I really don’t like to plan to do anything fun ever. I have to think of what I am going to do carefully so I don’t run out of energy all in one moment. I need to know that I have a day of rest coming up and plan my evenings/weekends accordingly to make sure I have time to recover. I know that sounds really strange, but I feel like it is just easier for me to be at home and to go do something fun if I am feeling up for it at a random time. I was talking to my mother-in-law about this problem of not ever wanting to do anything but be at home and have close friends over for a relaxing game night or something. I just don’t want or need any additional excitement in my life and it feels like I must be a really boring person. She was super encouraging to me and reminded me that Josh is a much more introverted, mellow person who enjoys spending most days at home or doing something relaxing. He has never been the one with the need to be busy. She said that, for him, this is probably more his pace than it was when I was trying to plan something all the time. I hadn’t thought about that and it has helped me to feel a little less guilty about my exhaustion and stress levels.
I have my good days and my bad days. My good days are probably how a normal person feels when they have eaten something that just didn’t settle well and has a sinus headache on top of it. I can function and do things that are fun in moderation. I have found that the Spoon Theory is incredibly accurate and do a lot of borrowing.
On my bad days I am a total wreck. I don’t feel like myself at all. I feel like the world is crashing in around me and that it’s never going to get better. I can’t think. I feel really irritable. I’m in pain. Just getting out of bed takes me at least a half hour. Showering uses up every ounce of energy I have…so I don’t. I feel confused. I can’t even remember what it feels like to feel good…to feel normal. I feel completely hopeless and bury my face in a pillow and cry…super ugly cry. I think that death would be so much better and all the pills I have laying around are really tempting. I thank God for the hope He brings and clarity that the Holy Spirit offers in those moments that death is not the answer. It’s interesting because I know that so many people view suicide as a horribly selfish act and I understand what they are saying. I really do. But when you’re on the other side and feeling like you want to die it doesn’t feel that way at all. It feels like living one more day in this
body prison would be impossible and you have to force yourself to believe that this is today…not tomorrow…not 40 years from now. For me, one of the things I keep in mind is that I don’t want my kids growing up wondering if it was their fault. I don’t want them to grow up being angry with God because their mom left them. I’ve also known friends who have attempted suicide and know that it is not the answer. It doesn’t solve anything. It just creates more problems. So I do keep those things in mind. So please don’t go calling the police, the doctor, or my parents to warn them that I’m suicidal. This is on my worst days. I do believe that this emotional response is very much linked to the disease itself. Depression and anxiety is very common among auto-immune sufferers and this is just one of those symptoms that I have from time to time. More often than I’d like.
Another question that has come up recently is whether or not auto-immune/chronic illness can really change a person’s personality. Can it turn an extrovert into an introvert? Can it turn an outdoor lover into a homebody? Yes and No. I feel a lot less extroverted these days than I used to feel. Going places never really bothered me before, but now I feel more anxious when I’m around a group of people I don’t know or when I’m in a place I’ve never been. I feel trapped. I need to know where the nearest bathroom is. Where is the nearest source of water? Where is the nearest source of food? How far away from my car will I be? What if I start to feel really sick? What if I get too hot or too cold? I prefer to be near my home. I want an easy escape plan. I want a bathroom that is far away from the action so I can go in there and be by myself and get it together. I want to be able to sit down, close my eyes, and breathe if I need to. I don’t look sick so I often feel like people won’t understand. That they will think it’s all in my head. So am I now an introvert? I think I’m an extrovert trapped inside a body that hates spontaneity and fun. How can I tell that I’m not a true introvert? Because I wish I could go and do all of those things. It’s not that being around people doesn’t sound fun. It’s that all of my symptoms get in the way. How can I carry on a conversation when I feel like I’m going to throw up if I say another word? How can I talk to someone when I feel like I can’t even think clearly? How can I go hiking and traveling when I feel like I’m going to faint? My body jut prevents me from being who I am on the inside.
I admit that I have a lot more thoughts about other people and their health. For example, my mother-in-law was telling me about an amazing teacher who has this incredible classroom and I said something about how great it would be to get to be in that class someday. She said that he never takes a day off. I said, “He must be healthy. I hate him.” I don’t really hate him, of course. I don’t really hate healthy people. It is just honestly really difficult to watch other people do things that you used to be able to do and can’t do anymore. That sounds so petty. I know. It’s something I’m working on. Like I’ve even gotten annoyed at television/film characters (even cartoon ones…) because they feel good all the time. That’s when I’m having a bad day. The only people I want to see healthy all the time on TV are Jessica Fletcher and Ben Matlock.
So there you have it. The good, bad, and ugly. I hold out hope that I will have another great season. Life will be filled, no doubt, with good months and bad months and I look forward to the good ones again. I also hope that they’re super awesome around Thanksgiving and Christmas because those are my favorite. Right now I have been spending time subbing and with my kids and I find that having a schedule and distraction is really helpful. The more time I spend just dwelling on how awful I feel the worse it is. It doesn’t mean that my symptoms go away, but having things to do even around the house helps to keep me going. It’s motivating. It reminds me of when I was in college and I would run 6 miles around an indoor 1/8 mile track. That’s a lot of laps. I would hit a point when I felt like I couldn’t run any further and I would tell myself, “just one more lap.” I would do this for probably 16 laps. “Just one more. Just one more.” And I always did “just one more” lap. When I have my kids and work I think, “Just get to lunch. Just one more diaper. Just one more hour.” I find things to do during those times like pick up a book with the kids, work on a coloring project, or some other activity that doesn’t require a lot of physical exertion and we get through. My days are often filled with “just one more lap” moments and I pray that God gives me the energy to keep running.