So Monday is almost over, the snow has splattered us and we persevere. Today I am going to get real with you. There are some things about me you do not know. Like my auto-immune disease, Relapsing Polychondritis and living with Prednisone Moon Face. And more..
First off, I have mentioned that I take medicine for Auto-Immune disease. That is true, but I thought I would elaborate a bit. This will NOT be a feel sorry for Elle post, au contraire. I do have this rare disease and it affects the cartilage in one's body. A person with this auto immune disease will have a misguided immune system, and it will attack cartilage and anything that looks like cartilage: eyes, ears, vessels, heart, kidneys.
So what does this mean? It means that special sense organs like eyes and ears are most often affected. I have lost hearing, say what?, and my ears swell every night when I sleep on them. Because of this I can not wear earrings. Tragic, right! ;) I can wear a very light clip on, and just for a short time. It also can affect the airways, and they can collapse causing death by suffocation. So that is a worry. In fact, my airways are involved, so I am on prednisone ( actually Medrol, same class), and a mild cancer drug called methotrexate. These medicines have really helped me and I am stable for the most part, and have good energy from the prednisone, and because my inflammation is well controlled, keeping the spells at bay.
However, from the prednisone, I also have moon face. It is subtle since I am so thin, but it is there, and it has changed the shape of my face. I have not gained any weight on this drug, which is rare. Here are some photos, done in collage format, of some older pics from older posts, where you can see that my face is more angular. The bottom photos are pre prednisone moon face.
You can see it best when my weight was higher, by 7 pounds in the pink dress, but also recently when I was 2 pounds heavier than I am now. At 90 pounds I don't look like I have prednisone moon face, but my face is less angular, which is fine. I am trying to gain a bit of weight. Here I must ask you, IS Reese's Cups a food group? I am kidding, I eat very healthy things and then a lot of this candy to help with calories.
Because of prednisone my bones are softer, so I must be careful not to fall or I might break something. Prednisone moon face is NOT the most disturbing thing, after all. But I have kept my bone density stable with Vitamin D and some weight lifting exercises, if one can count bringing a Reese's cup up to your mouth weight-bearing exercise. Kidding, of course, I do walk around the city and move fast, as the prednisone has made my metabolism go a bit faster. Hyper, much?
Ok, some other things I have not told you. My housekeeper takes my photos more often than not. Sometimes hubby does, but frankly it is not his forte. I feel awkward admitting that, I am not spoiled, but I do need some help around the house, although I do most of it, because of my disease. One morning, as I just woke I asked her to get a photo of me, in various places in my co-op to see what the inside lighting was like. With winter approaching, I thought this wise. Here is a photo of me in my torn top that I wear to sleep, it is feather light, and keeps me cool as I tend to run like a furnace. No make up on my face, and no flattering angles. Here it is -the Really Real: and eek, no bra. Did I even brush my hair?
This was recent, so at so at 90 pounds, no moon face. But I am bit too thin. I am so fine boned and tiny, that 92-94 is about right. You can see how old my hands look. I will also admit this, I do edit with light on a fabulous app called Rookie, and that makes my wrinkles look less noticeable, but I also will admit that I genuinely do have good skin. I attribute my skin to two things: the luck of being born to two parents with beautiful skin, and my fastidious avoidance of the sun. Period. This photo is complete unedited, and I had just woken up, pulling on my jeans and boots, anxious to walk my dog.
My doctors say my skin is "remarkable" . One got quite miffed at his assistant, who had taken my history, because he "obviously" made a mistake entering in my birth date. When I confirmed it was correct he audibly moved his stool and stood up, eyes wide, and muttered "remarkable". Then he nodded apologetically to his poor assistant, who was quite thorough.
Relapsing Polychondrtris is a complicated disease and it hard to diagnose because the usual course for a patient is to bounce around to many specialists, as it affects many regions. One week it is my eyes, a month later it is rib pain, 4 months pass and I have trouble breathing. I joined a Yahoo support group and they pretty much saved my sanity and gave me great advice. Now that I have had this for almost 8 years, I try to advise newer patients. The moderator, Carol G, afflicted badly with this disease is awe-inspiring. The support group can be contacted here. Whenever a multi system auto immune disease is suspected, it is classically hard to diagnose. Think multiple sclerosis (MS) and lupus. It is even harder diagnosing a disease that is rare, making a support group with access to up to date data, vital.
I do want to share this with you in case someone you know and love, or you, yourself, have symptoms that are vague and systemic. The red swollen ear is hallmark RP ( relapsing polychondirits) but not everyone has it. Also, to complicate matters the single commonly used test to confirm this disease is often negative, and that is the SED Rate, or sedimentation rate. True also with another inflammation blood marker, CRP. If you want to know more about this you can contact me directly, I am pretty asute with the medical language and am also well versed on the other diseases we thought I had... I am sure most of you are skipping on to another post to see some stylish blogger who is young and well. That is okay!
So the answer to a question you may have, my style peeps, is why the sunglasses indoors. One is that I do often blink with the flash, The other, is that many days my eyes are so swollen, I look strange;
Eyelid edema is none too attractive. As well, I have swollen arteries that may cause blindness, ( as if prednisone moon face is the most worrisome thing!) as it did in my mother's similar disease. And then there is the scleritis, which makes my eyes red and unsightly, but responds well to my meds. Here is a photo of one such attack. You can also see my left ear is red, if you look closely. Thank heavens for my oversized and very dark sunnies!
So that is a pretty full disclosure, I think. I wanted you to have a better sense of who I am. I have had several comments on this blog and in recent events, where I have been compared to Barbie, a great compliment. But I am more like Barbie's grandma with some true rheumatic ailments! Oh, and other camera tricks I will disclose, too: I like having my photos done with the camera a touch up, and the angle makes me look tall, and then there are my new 5 inch heels. Now that you know my history, you know I will wear them with great caution!
I am sorry of that was technical and boring, but I sort of hope that it might spread the word about my rare disease, and if that helps just one person out there, I will be glad. I want to end this super boring post with something relevant to my blog. I sort of started this as a "picture me well" experiment. I wanted to explore a new discourse with people who do not know of my illness, and see me as the healthy person I appear to be. This strategy has worked no miracles, but it has worked. I think it is good to imagine how we WANT to be, in that way we create a pathway, very faint at first, to getting there.
So I am pretty well, and that is the take away, but the path came first. I am happy that my life is almost always pain-free and that I have so much support from family, friends, and the medical community, too. That smile you have seen a thousand times, I have edited with light ( final secret disclosed) to look brighter, but my smile is REAL: really, real.