Isolated and Confined

   I started this blog so that I could diary my journey in life. I have not done a great job of that. I have not posted since July on both my blogs that I run. For various reasons in my life. I could make a ton of legitimate excuses why. But I decided to start up again. And for a few reasons. Maybe I can help someone going through similar experiences. And just maybe I can help myself feel less isolated and confined.

   Having multiple disabilities can make you feel very isolated and confined. It is kind of a fact of life really when you are dealing with something that leaves you bedridden a lot of the time. And if you are not in bed you are just isolated to your home all day. It literally becomes your prison.

   I suffer from multiple disabilities. And if you are my friend reading this and close to me. You most likely already know my inflictions I suffer from. If not and you are here to see what this diary is about I can break it down a bit. Later on, I will discuss what each one does to me. I suffer from Primary Progressive Multiple Sclerosis, Rheumatoid Arthritis, POTS, Stargardt disease. The past year I have also known about a tumor on around my Ovary that keeps growing. It has septa which means it has become solid. And this can mean a lot of things. As well as my Uterus and cervix has become very thick. I know a lot of TMI. Needless to say, the tumor will be removed soon. I had a failed biopsy outpatient (due to my Uterus and cervix being so thick) so they will be doing it during the surgery and they will also do an Endometrial Ablation. If all tests come back negative for cancer I get to keep all my lady parts. If not they will go back in to do a full hysterectomy. I am thinking positive on no cancer.

   All these diseases leave me feeling well worthless sometimes. Granted I know I am not. But it can get you down and depressed. It has isolated me from the world because I don't venture out much. On my good days, I am lucky to get out of the house to go to a grocery store or the doctor's office. And I am constantly fighting with my body to let me go to meetings and out in field service. Social Media has become my outlet for talking with friends and family. I would love visitors. But people are busy so those are far and few in between. But I get excited when I have visitors.

   I also homeschool my children. My son who has some medical issues and special needs. It became impossible for him to attend Public School. And I had various other reasons for homeschooling as well. But his health was a huge reason why we took him out of the public school setting. Between my son getting chronically sick being around other children all the time. He caught everything those kids brought to school. So he missed a lot of school days and spent lots of time in the doctor's office, ER, and hospital. Since he has been out of Public School those visits for being ill are a lot less. Also, he still has therapy several times a week 4 times a week to be exact. Play Therapy, Physical Therapy, Occupational Therapy, and Speech Therapy. He used to get Music Therapy till his therapist quit. Now he is back on the waiting list for Music Therapy. So it was just easier to Homeschool my son. Well both my children. Granted I do have help. He has a Paraprofessional here at the house.

   So I stay busy between doctors, therapies, and homeschooling. But it still confines me. All his therapies besides Play Therapy is done at the house. And of course, we do have to leave the house for doctors appointments. And those are plenty. I am thankful to his Para because she assists me so we can get the kids out of the house and to events around town. She is a godsend for sure.

   So you would think with all I have going on how can I feel so isolated and confined? Well, I just do. None of what you read about is fun. It is a hard life. And it equally has been hard on my children. My daughter who understands everything all too well feels it more than my son does. She sees people going out and having fun. We automatically don't get invited to homes or events. I think people just automatically assume I will not feel well enough to go. But the fact of the matter is. I have good days. I might be having a good day. You will not know if you don't ask! And no matter what my children need connections with others around us. Yet I fear that some just don't want to take on the added responsibility of my children. Don't get me wrong. There are a few that do. But they happen to have a lot of health issues on their plate as well. But I do find those with health issues are more willing to step up. Because they understand they get it.

   So I decided instead of sitting and doing nothing to let people know how I feel. I am going to start writing again. Because soon that will even be hard. RA is starting to twist my fingers. It is the beginning stages. But it hurts and it is painful. And I know soon enough the luxury of typing without outright debilitating pain will be here soon enough. This month also marks a year since my left eye was removed. I think that has gotten to me more than I realized as well. And realizing that I am slowly daily losing that other eye to blindness scares me so much. Each day I wake up to a little more gone. And each day I wake up wondering if today is the day I open my eyes to darkness.

   This month is going to bring pain a lot of pain in many ways. Anniversaries to a major loss and most likely my surgery will be this month. I can get through this. But I have come to realize. I can't do this so much alone anymore. I need to start talking and people need to start listening.