What an Honor

It has been an honor to be added to “The Wall” as I like to call it of The Faces of Ankylosing Spondylitis. Helping a huge inspiration of mine to see her vision through has been so rewarding for me. Though it may seem small and trivial to some people, it really means the world to me. To help bring a voice and a face to a disease that is so misunderstood, even by the medical profession.  To help show people what an invisible disease looks like. Often times when I look my best on the outside, I feel my worst on the inside. We are often accused of “pretending to be sick”, but in all actuality, we pretend to be well. It’s easier that way, to avoid the constant barrage of questions or “have you tried this”.  I feel fine has become my go-to line, but those that know me, know. I would love to work a normal job, go to the gym again, play catch with my son in the backyard, walk my dogs, go canoeing, camping, hiking, garden again, clean my house without worrying how I’m going to feel the next day because of it.

So Yes as silly as it may seem to some people, it is indeed an honor to be put on “The Wall” to represent The Faces of Ankylosing Spondylitis for Cookie. No this isn’t the life I envisioned, but it is the life I have and I am going to do everything I can to better it, and hopefully make others that are going through the same thing better too. We are Stronger Together.

via Christina Lowe

Strength

Sometimes it’s not that easy, other days it is. Dig deep, push aside the past, forget your pain, and rise above. We all have scars, we all have demons, to what extent do you let them rule your life?! You must persevere, stand strong, face the unknown, no matter how scary it is. If not for yourself, do it for those you love. They deserve the best of you, even when you don’t feel the best. When you can’t give the best. You’re stronger than you know. 

I have more Specialist than I do friends.

In my absence I have had a few doctor appointments. I saw my rheumatologist, I’m being weaned off of the predisone I have been on for 4 months for serositis.  So I feel like I am being squeezed constantly and I can’t breathe anymore. The meds that the pulmonologist gave me for that did not help. I had a bad reaction, so I am left with a rescue inhaler that really does nothing, since I’m out of breath just talking or walking down the hall. This is all for the severe asthma that they say I have since I failed the methocoline challenge, loosing 86% of my oxygen. I am able to get oxygen, just not expel it. I get short of breath very easy, which I am told is common with both AS and Lupus or in other words Connective tissue disorder. On the bright side the prednisone was helping my breathing, and hopefully has gotten all of the fluid out of the lining of my vital organs.

I saw my neuro-opthomologist yesterday about my migraines. The eye that my migraines start in, the horrible pain I get right before a migraine, in the back of my right eyeball, and in my right ear, usually before a storm, or if the pressure has dropped. That is what triggers my some of my migraines. My lupus ones are triggered by being out in the heat for to long, usually the 2nd or 3rd day of a baseball tournament and I am toast. I take a preventative and I take the as needed medicine, but lately the as needed hasn’t been working for my migraines, and they have been coming on more infrequent and with no pattern. I have noticed going in and out of the AC a lot will trigger a headache that if I can’t catch in time will turn into a migraine, bright lights, loud noises. All related to Ankylosing Spondylitis progression and Lupus progression from what I have read. However, the optic nerve in my right eye is not going straight back like my left one it is going up. My neuro-opthomologist noticed it the last time he saw me and this time he seemed a little more concerned about it. My eye didn’t hurt until after he shined the light in it a hundred times and did a scan of it then had me do a field vision test for my peripheral vision, which is going in my left eye. sheeshhh.

I go to the opthomologist this week coming up to do a full vision panel and have my eyes dilated and all that fun jazz. My migraine preventative was bumped up to 250mg and an extended release and my as needed was changed to another one that is faster acting. It is amazing how destructive these autoimmune diseases can be to our bodies. Not only does it mess with out bodies but it also affects our minds too. In some people it can alter your chemicals and make you depressed, we can get brain fog and forget things, our cognitive skills go out the window and it’s not our fault.

I know for me after a bunch of doctors appointments I really just like to be alone. My appointments are never good news. They always seem to be telling me something new is wrong. It takes me some time to absorb what is happening, talk to my support group, lean on my close family, friends, and my dogs🐕 The stress of the unknown and the worry is not good for anyone, especially people with chronic illness, so I have learned to let that worry go. It has taken some time, but I know that what ever is going to happen, is going to happen and me worrying is not going to change the outcome. It is only going to make me sicker and that is not good for me or anyone around me. Now I’m not going to say that I never worry at all because that would be crazy, we all do, its natural, but I’m not as bad as I used to be.

I have learned to walk by faith and not by sight, because honestly, I have absolutely no other choice if I want to stay sane. There is so much going on in my body that I do not understand. There has to be a reason that my body is attacking itself. I know the obvious reasons, genetic, environmental, autoimmune diseases. Believe me I’ve done all my reading and research, I could be a scientist or a doctor by now, but making sense of it all when I am in pain or being bounced from doctor to doctor just isn’t easy sometimes.

 

Everyone has their views on faith and spirituality and to each their own, I applaud them all, because I believe they all stand on the basic principle, “Do unto others as you would have done unto you.” Be a kind person, help those in need, give more than you take, stand up for what is right, look for the good in every situation, stay positive and you will get positive back. The energy you put out is what you get back. I believe this is good for all people and especially good for those of us with Chronic illnesses, when it is so easy to stay stuck in the negative. It is ok to be upset, I recently went to see my shrink about my anxiety over my chronic illness and possible depression.

We can’t stay there though, we have to figure out how to get out of it. Whatever works for you, reading, taking a nap in the afternoon, chatting with your friends, meditation, mindfulness, religion, exercise, medication, music, gardening, sewing, journaling, photography, drawing, coloring, baking, etc.  I can go on forever, you just have to find what you joy is in life and when things get tough turn to it. We are in this for the long haul, and we are fighters.