My Disabled Parking Spot Is A Micro By Dana

My heart races, my palms sweat, and I worry about how long I will last. Will I feel well enough to make it through a full dinner, sitting in a chair at a table in a restaurant?  Will there be a place to sit at the party we are attending? What is the parking like? Do we park on the street; will it be a close enough spot so I won’t have to walk far? Can I wear my awesome new shoes, or will I be stuck standing in the corner praying that we leave soon so I can cut my feet out of my shoes? The history of my family’s nationality is Italian (Sicilian), Irish, German, and my very own history is that I was born on Nov. 3rd, making me a Scorpio, born in the year of the Tiger. What does all that mean? Well, I’m normally outgoing, happy, funny, everybody knows me, the life of the party, easy-going, and loud!

I was always the person that loved a party. I enjoyed throwing a party and going to one. I still do, but just not the same as I did years ago. I was even thrilled with the prepping for the party; still am, but it’s so different now. I used to decide last minute to have friends over, or I’d jump at the chance to go over to a friend’s spur of the moment. First of all, so much planning is involved just in my day-to-day life now that adding any new tasks, activities, etc. involves extensive planning. Besides extra planning, I also have to take into account that I will need to set aside more rest periods and break because I will be doing more in the time allotted for my normal activities of the day. I can’t add more time to my day. That would be perfect!

Usually with social outings, I want to look good. If we are going out, I want to take some time to fix my hair and make-up and put on an outfit that makes me look confident, strong, will make heads turn, and so people will be talking about me the next day (and not about the fact that I limp, the size of my scar on my right arm, if I look like I’m getting enough sleep, about my weight–up or down–or their opinion about the status of my arthritis and physical condition in general). I want people to talk about me as a person, as Dana, not as my chronic illnesses. I want them to notice how awesome I am and like me for me! That is what I look forward to when we have social outings. That is why I love to go out with my hubby and friends. I forget about being sick for a brief moment. Others see me for me. Problem is that my illnesses are a part of who I am, and they don’t go away just because I forget about them for a while. I am not my chronic illnesses; they are not me; but we are partners in a sense.

Certain things that others may take for granted, I have to struggle with daily. I can choose not to wear make-up which is a lot easier for me because it is painful for my hands, fingers and wrists to put on make-up. Normally, I just wash and brush my hair and then let it dry~easy shmeezy! When we are getting ready to go out somewhere, I have to one-up myself. Make-up application can be a painful procedure, but when I have a psoriasis flare, which I have been struggling with for almost 4 months now since June, I have to deal with how to apply my make-up. It is a difficult process, a tedious one and requires several careful steps. First, I wash my face with a gentle scrub to remove as many skin flakes as possible, and the gentle scrub doesn’t irritate the skin. I pat my face dry, and then I apply a moisturizer for eczema/psoriasis prone skin. I let that soak in a bit. Then I apply my psoriasis steroid lotion. It’s thin so make-up goes over it pretty easily. I use all Physician’s Formula products for my make-up and apply a very thin layer of green pre-treatment to cover the redness. Then I apply a thin layer of light liquid foundation. Then I use a powder that is translucent with yellows and greens in it to again cover any redness that is still visible. Then I use a buff beige or creamy natural colored powder compact. I brush gently over my entire face to remove any excess powder. Then I apply a light bronzer to bring a little life and light back into my skin. Then I add some rose colored blush to my cheeks and eyelids. Then I am done. I still am flaky a bit, and I still have some redness and itchy/painful skin, but the difference is like night and day!

Then there is the hair…I usually am so worn out from doing my make-up, that I don’t have much strength left in me to do much to my hair. I have straight hair, but I use a flat iron to flip the ends out or curl them under. I also curl my bangs under with it. I have a long, asymmetrical hair style with bangs. It is pretty simple to style. It looks pretty when I use the flat iron, and as long as I am caught up with coloring my hair (dark auburn), I’m good. If my hair needs to be dyed, I use Clairol’s Natural Instincts 30R. Otherwise, if I fall behind, I have gray roots. I just experienced that, and I do NOT want to go there AGAIN!!!! All my roots are so gray now, almost white. They are so coarse and break easily. Some are about an inch long from the root and stick straight up from my part. OMG! They are so noticeable. I used to pull the gray hairs out before a social outing. Now, there are too many to count let alone pull out.

With my horrible psoriasis flare, I couldn’t dye my hair because it was on my scalp. I didn’t want to put any chemicals on my head with open sores and wounds from the psoriasis rash on my scalp. That would be all I needed~an infection on top of the psoriasis. So I waited and waited for the scalp to clear up. The first day that the scalp was clear of the psoriasis, I tore open a box of Clairol’s Natural Instincts, and away I went with the application!  Funny bit of info~the only time I wear my contacts is for a really elegant event like a wedding or gala…… AND…..when I dye my hair. Why?…because I can’t see but a couple inches in front of my face. I wear glasses all the time. I have contacts for those special events, but I really can’t wear contacts because of the Sjogren’s. I make next to no tears at all. The tears that I do make do not contain the oily lubricant. They are just salt water. Just thought I would give ya that little bit of info about me. Kinda funny I think. Most people would take their contacts out for fear they might get the dye in their eyes and get it under their contacts. I put my contacts in specifically for the dye-job. Hmmm….hope I didn’t just jinx myself. I haven’t gotten any in my eyes yet…

So for me, social outings can be fun, but in order for me to enjoy myself, I have to be fully prepared. I have to be fully rested. Not only for the party, but rested enough to prepare for the party to have enough energy for the prep and for the party itself. I also need to remember that prep might include my getting ready, food preparation, cleaning and straightening our home, decorating, and now that I have a baby, getting him dressed and ready for the outing or for the babysitter. Wow, just by putting it all in writing makes me exhausted!

I really wish that my family and friends that see me at these social outings and events could walk in my shoes for a day or a week or a month. ( I really, REALLY wish if they walked in my shoes for a while that during that time, I could borrow their shoes and switch places and be normal for a bit. Phew. That would be such a relief!) Sometimes it is so hard to imagine what it takes for someone who is in chronic pain, who has several chronic illnesses at once to deal with, is disabled and on top of it all has a baby! Now I know I chose to have a baby. Don’t write any comments about that little, teeny, tiny part of the sentence. I am just expressing to those that are not chronic babes out there everything we deal with on top of a life as a mommy, which is fairly normal. We do have the right to live a life like those that are fairly normal. I hope you all agree with that!

That is why we will go through hell to cook and clean, and put layer upon layer of  pre-treatment and make-up, dye our coarse, gray hair (most likely caused from all the medications and anesthesia). We want to enjoy our lives. We need the social interaction, whether it is with healthy, “normal” people, or with people that are going through similar chronic conditions like us.

I don’t always go to social outings with “normal” people. I also go out with my “like” friends. Although I like the social outings that take my mind off being sick and help me feel normal for a moment, I also actually enjoy going out with my “like” friends to be myself in another direction completely. Those are the social outings when I don’t have the energy to cover the psoriasis, and have my gray roots that are 2 inches thick. We limp along together, and sometimes get looks from others. These are the social outings that others look at me for me when I DON’T look good. This is when my illness is not so invisible, and for once in a great while I look sick. I have a few “normal” friends that I can show this side of me with when we go to social outings, but with most I prefer to hide as much of the chronic side of me that I can when we are in public shopping, partying, having dinner, celebrating, or whatever we are enjoying together.

Sadly, many people who say they love you no matter what, will be a shoulder for you to cry, will hold your hair while you get sick from your chemo, will have a pajama day with you everyday whereby no one wears any make-up or does their hair; but the moment you are invited to an important social event together, they do not want to be seen with you if you are not going to be able to do something about covering up that skin condition (psoriasis) that looks like the horrible acne you had back in high school. They don’t understand why you won’t go ahead and cover your grays with the dye. Psoriasis is “just really dry skin on your scalp, right? So how could dye harm it?” They don’t want to take the time to understand your illness, so they just make assumptions which are incorrect, and as I was always told about when you assume, you make an ASS out of U and ME! Psoriasis is not acne. When it is on the face, it does resemble it. It can be severe. It can bleed. It can scab and scar. It can look like raw meat and pizza face like the awful names kids called each other in high school with severe acne, but it is not acne. It is not caused from being dirty. Washing your face more will not clear up your skin. These are all things that have happened to me, real things that people have said to me, actual words from “normal” people who are not sick. These are hurtful things. This is why it can be hard sometimes to go to social outings with “normal” people, and why it is a lot easier to go with “like” chronic babes!

This isn’t always the case though. I just want to stress that I do enjoy going out with my “normal” friends that treat me like a person, like I mentioned in the beginning of this blog post. That is why I am able to forget for the moment that I’m sick. They treat me like I’m not sick. That is what is so fun about it. I get all dressed up and spiffy, and then my “normal” friends treat me normal! So ya see, it is hard for us chronic babes to live in both worlds. Best case scenario is to be able to bounce in and out of both worlds from the “normal” world back into our “chronic” world. It takes practice, and trial and error. Find what pace works best for you, and how often you can leave your chronic world to go to “normal” social outings. Also, make sure that you are treated equally in the “normal” world. If you aren’t, it isn’t worth your time and effort. You would be using a lot of energy preparing to go and then actually attending for something that you would be getting nothing but heartache and pain from.

It makes me think of all the times that I park in my disabled parking spot…

So many times I have gotten out of the car, and someone has said to me not to park in a disabled spot because it was for someone that needed it. Each time, the person thought there was nothing wrong with me to cause me to park in a disabled spot. Of course, I have many, many things wrong with me physically, and in fact, have 2 joint replacements, and I am awaiting the collapse of 4 other ones at any moment to then have them replaced. There are some days that are better days (I rarely use  the term good days), and on these days, I may still park in a disabled spot (because I am still disabled even if I’m having a better day), but I will most likely have my make-up on, be dressed nicely, and have my hair done and dyed! On bad days, I again will be in the disabled spot, but on those particular days, I will very likely be in sweats or lounge wear, will have no make-up on, and will definitely have my hair in a ponytail with my bangs clipped back. The disabled parking spot is a microcosm of my life in regards to social outings and how people look at me and treat me when I go out.

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