I have known for years about my autoimmune arthritis (Psoriatic Arthritis, Sjogren's, possible A.S. and Lupus). I have known even longer about my Avascular Necrosis (of the hips, shoulders and knees). When you have diseases that are chronic like this and that have serious effects on the body as a whole, you have a lot of fears about what could happen to you in the near future, in the distant future. Other people don't always realize how frightening it is to live your life with all these diseases, syndromes and conditions. Yes, you get used to the chronic lifestyle to a certain extent, but you never truly erase from your mind that other people are living normal, healthy lives every single day. For those that were always sick, you would not necessarily remember feeling normal unless you were not diagnosed until you were older, and you felt well even though you were sick. But for those that actually were normal for period of time, you may actually remember feeling well, and now are able to compare normal to chronic. For me, I give the age 19 when I began going to doctors by myself. I was in college and on my own. I knew something was wrong with me and sought out help to find out exactly what was wrecking havoc on my body. In hindsight, though, I was one of those people who was possibly always sick but did not necessarily remember feeling sick because I wasn't diagnosed with anything until I was older. I might have felt well even though I was sick.
My biggest fear, now that I have a son who is 15 months old, is that I will not be able to be the best Mommy I can be. I know that I love my son with all my heart, and he loves me as well. I know that I would do anything for him, for his safety, for his happiness, to see him laugh and smile. What happens if a day comes when I can't do something for him? That is my biggest fear.
When I was told that the autoimmune arthritis had gone to my spine, neck and S.I. joints, I got so scared, not for me that I would have pain, lack of mobility or anything about my self. It was purely selfless. It was all about my son. What if this limited me with my son? I was so afraid. I had to do something. I am making sure to keep on exercising to keep my spine gently moving all the time. Aqua aerobics and belly dancing is working best for me. I feel really great doing that, and it is helping with the pain and mobility. When I stop moving, the stiffness, decreased range of motion and pain come back full force!
Then, an even bigger fear occurred! I had already had my left hip replaced in 2003, and then my right shoulder collapsed in October, 2009. I had my shoulder replaced in March 2010. Nine months later, we adopted our gorgeous little boy! I felt like it all happened in that order so that it would be easier to take care of him. I had a brand new shoulder and one good leg! I thought I would be able to keep up with him easier than say 10 years ago even. Well, that was true, three months ago. Then, the right hip started, clicking, sticking, popping and giving me more pain. I knew what it meant, but didn't want to believe it. I feared the worst.
My orthopaedic surgeon told me it was in the final stage of Avascular Necrosis, and it needs to be replaced as soon as possible. I am doing my best to keep up with a 15 month old as he races through our home. He throws a ball and runs after it now! He wants to play all the time. He dances to my belly dance music with me too. I am doing OK with the pain. I am still keeping up with my son and housework and even still belly dancing. I just fear that I am going to lose out on some important time now with my son. I am going to get it replaced May 10, 2012. That means I will have all summer to rehab. I won't be able to hold my son for a few months, get on the floor and play with him, bathe him, clothe him, run after him and play like he does.
So I am watching my biggest fear unfold before my eyes. I am losing control of my body again. The hip is collapsing. I am losing mobility fast. Soon I will have my surgery, which is a pretty extensive surgery by the way! Then rehab is a bitch! At least 3 months of intense rehab without holding and being the main caregiver/caretaker of my only son~perhaps the only son I will ever have.
So to get through a fear that is unfolding before my eyes, I must show courage. My son must see that his mommy is brave, strong and courageous. I want him to learn that although his mommy has all these health problems, she will never stop loving him. I will always be his mommy. As soon as I recover, I will be better than before, a new model! We will run and jump and play more than before. I don't think I will put him down. He will forget how to walk himself!
Children of mommies with chronic illnesses are the strongest, bravest, smartest, and also they are able to show more empathy and sympathy because they lived with their mommy and helped their mommy. I think it teaches them how to love, care and nurture. I shouldn't really fear because I am raising the perfect child!
