Still Struggling Along With This Autoimmune Disease
- January 24, 2017
- Theresa Bertuzzi
Holy moly is my face swollen. Yesterday I was watching a TV show and every time I would laugh I kept seeing something blocking the bottom of my vision. I thought that there was something wrong with my eyes again as my vision has been blurry lately. I soon realized that, OMG, it was my own cheeks. They are so round now that when I laugh I can see them in the bottom of my vision. Also, when I bend over to pick things up they push up into my line of sight so that I can barely see. My head feels really heavy to me and uncomfortable and I feel like a human bobble head. All of my very kind family and friends are always saying that they really don’t notice the swelling too much but I am shocked when I look at my face in the mirror. Here’s a lovely side by side so everyone can see the difference. Picture one was taken the first day I started taking Prednisone and the other was taken today.
The unbelievable part is that I am about 12 pounds lighter in today’s picture than I was in the first picture. How I can I possibly be 12 pounds lighter when my face looks like I am 30 pounds heavier. It is ridiculous. I do have days where my face seems to deflate somewhat after I spend a few nights with horrible night sweats that have me changing my pyjamas at least three times a night.
In addition to being much bigger my face is also much hairier thanks to the lovely steroids I still have to take. For the past seven years I have had absolutely no body hair at all so I am used to very smooth skin and all of this hair feels terrible. Thank goodness it is coming in blonde all over my face but the sheer amount of it is ridiculous. I have to shave the entire thing every single day. I have hair on my cheeks, chin, forehead and even my nose. Do you know what it is like to be a girl that has to shave her forehead? Well it really, really sucks. I really need to go and have it all waxed or sugared off but it grows so quickly that I don’t think I can afford to keep up with it and it is pretty pricey to have to get your entire face sugared as everyone seems to charge by each facial part and I need a full mask done. “Hi I’d like to make an appointment to have my face sugared,” “…no, not my upper lip, the whole face, yes I am a human hair ball.” In addition you have to grow the hair out to a certain length before you get it sugared or waxed and I am not really ready to let the hair get this long so for now I am just shaving it off as quickly as it is coming in and yes I know that this is not good for my skin and may cause it to grow in thicker and feel more prickly but what am I supposed to do??? My eyebrows are also filled back in and are now trying desperately to form a giant unibrow and they are as bushy and untamed as Groucho Marx’s eyebrows. I even tried using some gel on them the other day to try to get them to stay down and in place but that just looked really weird. Luckily they are blonde too so it is not that noticeable until you get up close. If all of this hair was dark I would be in real trouble but I can pretty much arrange my hair to hide most of the damage and then I shave all of the spots that I can’t cover up. So I have now discovered something worse than losing all of your hair and going bald; growing it all back on your face is much, much worse!!!
My muscle tone is improving quite a bit and I am able to get around really well now. I can walk much farther than I used to be able to walk and I am able to stand for much longer periods of time. It is really weird though in that I will be doing really well and feeling a little bit like my old self and then suddenly, with no warning, I will get tired and it is like a switch is thrown and my muscles shut down. I can’t explain how weird of a feeling it is. The other day I was shopping for groceries and I felt completely fine pulling items off of the shelves feeling perfectly normal. Then suddenly I felt tired and the same loaf of bread that I threw into the cart just 15 minutes earlier now felt like it weighed twenty pounds as I hoisted it onto the conveyor belt so that I could pay for it and I was suddenly sweating and struggling to put the groceries in the bags. It is really a surreal thing that happens as at first my mind thinks that there is something wrong with the bread and not me. In my mind I actually think that the bread is getting heavier and not my muscles that are growing weak. It always takes me a few moments to adjust and can result in some pretty hilarious moments too as I can never really judge how much effort I need to put into some of my motions. Sometimes I will grab something and end up launching it or throwing it across the room with great force as I am not expecting it to be so light or I will pick up something and end up collapsing under the weight because it is suddenly too heavy for me. Some days I can go all day feeling fine and others I am so weak that I need help getting up the stairs. It is so random that I really don’t know how I am going to do at any given moment. This makes me really nervous when I am committing myself to social and work events because I may be perfectly fine and do a great job or I may be so tired that I will need to find a place to sit down or I will collapse without much warning. One minute I am on my feet and the next I am flat on my face on the ground and I can’t even get my hands up to stop myself. I have a couple of good bruises on my forehead as a result of these incidents. The most recent happened just yesterday when I gracefully landed head first into the laundry basket in my room and last night when I ended up face down on the stair case. It is really frustrating too because I want to get out there and do so much but I am terrified that I will wind up passing out in public and causing a huge scene. It is also difficult because people see me out and about and think that I am fully recovered because I am able to move about now like my old self and I honestly don’t really look sick. It is so strange to have an illness that makes you feel at moments like you are surely dying but when you look in the mirror you look perfectly healthy. I am so grateful though for the moments when I am strong again and they are lasting longer and longer giving me much hope that I am well on my way to remission. I am planning on getting back to the gym next week to start some body building. I figure this is a pretty safe way to get started as I can sit down at all of the machines so if I get light headed I won’t collapse in front of anyone. I am interested to see how well I do.
The only other part of this illness that is still really bothering me is the steady burning sensation that these crazy medications are causing in my sinuses and nose. They are steadily burning and my nose bleeds lightly throughout the day. In addition to constantly having to blow my bloody nose I also still have that horrible smell of rotten meat that follows me around wherever I go making most things taste and smell terrible to me. No, I do not smell like rotten meat and I have made Danny smell my nose to assure me that my nose does not in fact smell like rotten meat; it appears that only I can smell it. It is so terrible though that even water tastes like horrible chemicals when I drink it and I can barely swallow my meds without throwing up. I shudder and get chills just thinking about having to take them. It doesn’t help that I am still having a little bit of trouble swallowing and drinking and will sometimes still choke. I have also started choking a little bit when I have to speak for long periods of time. I did a morning of training last week and I managed to only choke one time while I was speaking, which was pretty good considering that I spoke steady for about three hours. Everyone knows that I am sick so it really is not a big deal and no one seemed to notice except one of the directors that was sitting right beside me. She jumped to attention right away, grabbing for the water bottle in case I needed it. She was right on guard as though she was ready to jump in and give me the Heimlich if I needed it. It is nice to know that I have sweet people around me ready to help out at any given moment. Although I was certain it sounded like I had just let a loud burp go. Classy and very professional I tell ya, that’s me!
That was a whole lot of complaining but I really am improving an awful lot. I am just feeling really tired as I have now been dealing with this for the past 7 months. I have never taken this long to recover from anything including my first Lupus flare and I am feeling a little bit discouraged, tired and frustrated. It is kind of like having the worst flu that you have ever had and having it last 7 months straight with no end in sight. The doctors told me that we were looking at a few years to recover and get me into remission but I really did not believe them and figured I would be that person that proved them wrong and I would bounce back onto my feet within a few weeks. I really thought in my heart that I would be able to taper off of these horrible meds by now and I would be that amazing success story of what can happen when you had a positive attitude and the right mind set. Well boo! My mind is still positive but my body is not cooperating with my mind and mind is very pissed off at body right now for being so stubborn. Mind wants to get out there and run a marathon while body just falls down like a stubborn child throwing a tantrum and says “no, let’s lie here on your face for a while.” Well body, you are going to lose this battle because mind and heart are not ready to throw in the towel yet and there is way too much more fun to be had out there. Oh man, I really need to get out of the house as I am thinking that I may actually be losing my mind! LOL