Back to Work

I’m sorry it has been so long since I have posted on here. As I mentioned before, I have started working full time in addition to my three graduate level courses, so I’m very beat nearly every day. I have a couple of updates for today.

I saw a geneticist not long ago and learned even more updated information about EDS, and it really opened my eyes to how little EDS is actually what causes the most pain and problems. Much of the issues I have, like Sjogren’s, sleep apnea, herniated discs, psoriasis, terribly dry, itchy skin, hypertension and more are actually from pre-dispositions in genetics. Interestingly, none of these things are genetic, but they do tend to run in families, and having close family members with them tends to increase the risk of getting them. In our family, that risk increases ten-fold apparently. All of these conditions can be significant issues on their own. All of them can be attributed from my father and most of my sisters and I suffer from many or all of them. With autoimmune disorders, you may not get the same disorder as the family member, but you are more likely to get some autoimmune disorder if a family member has one. Sjogren’s and Psoriasis are autoimmune, and my father has Psoriasis and rheumatoid arthritis and I got Sjogren’s and another sister has rheumatoid arthritis. My father also has sleep apnea, heart disease, herniated discs and other issues. Another of my sisters has herniated discs as well, and most have some sleep problems. It’s funny to me that we have this rare genetic disorder, but it seems to be quite mild compared to the multitude of other issues we have.

With at least one exception.

My sister “J” seems to have the most problematic EDS symptoms of all of us. She gets recurring spinal fluid leaks and more pain and fatigue than any of us. She often must use a wheelchair/electric chair, and is at times bed-bound. With four boys 11 and under, this can be very difficult. It makes it hard for her to do basic things for herself and her family. Her husband is a firefighter and so can’t always be there to help. To get the leaks fixed, she has to go across country to a specialist in Los Angeles. There she can have several tests done and then surgery to close the leak. It is very expensive and even just getting there is very hard for them. They’ve made it work a few times now with help from donations and family. She is so strong, like most with chronic illnesses.

In other news, work is exhausting and I am barely keeping it together. It is so conflicting for me because I LOVE to be working, especially in a job like I am in now, where I am constantly learning so much about my field of interest. This job is just a ‘temp’ job but it has valuable things to teach me. There has been talk of a permanent position, but I feel like I’m being tossed around, unsure of where I’m going or if I will be dropped. It gets a little irritating not to know whether I will have a job in a month or not. However, at the same time I am so tired every day that I know it would probably be better for me physically to stop working again until I finish my graduate degree. The problem is that I love to work, and I really need the experience, because I have very little in my field, and jobs that my degree qualifies me for, also require several years of experience. So I am trying to figure out a middle ground.

Well, thanks for returning and catching up with me, please comment and visit my sister’s page if you can, even if just to say good luck or something.

Love all,

E&O

 

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Where the Heart Is.

We spend years fighting with our siblings, growing with friends, hurting each other and then making up. A large, complicated family and friends that have come and gone, there are so many things we take for granted when we are really young. Before moving away from home, I admired my older sisters, but practically hated them. I always felt left out and ignored. But, like magic, we were all grown up and we all began to respect each other, and even became friends. Kids started coming, and we got even closer, helping each other out.

When I was 21, I joined the military, and with very little notice, I moved. First, Texas for basic training and technical school. Next, England. I got to England in October. It quickly hit me that I was going to miss Thanksgiving and Christmas with my big, nutty family. I became depressed. I started getting migraines daily, and spent most of my off time crying alone in my dorm. A week before Christmas I met my now husband. He saved me. He is the only reason I made it through the holiday, through the first few. We since moved to Georgia, and then to New Jersey. Since 2009, I have been with my big, nutty family on Christmas on once. Husband hasn’t been home even longer, and Christmas has always been hard. After our kids came, Christmases were for them.

In waves, I feel this immense pull to be with my family. The sadness can last hours, sometimes days, sometimes a week or two. I miss that feeling of people all around; kids crawling and running all over the floors; people on every chair, in every corner, and in every room; the kitchen packed. I miss knowing that the 30 or so people in the same house all love me and I love them. I miss always having somewhere to go, people to see. I tend to fall into this TV/couch stupor, which only makes it worse, because I find myself watching shows like Parenthood, Brothers and Sisters, even Full(er) House, and other family shows/movies. I love them but they just make me hungrier for that big family feeling. (Why do I do this to myself?) I pull myself back out of it eventually, remembering that we can all still love each other when we aren’t together, and that we will see each other again.

But waves don’t go away forever; something always starts them back up.

I never knew how much I loved my having them in my life, until I couldn’t anymore.

Even with all of the moving and meeting new people and then moving again, I have managed to make a few friendships that distance can’t break. These people are my family. I love them, and I miss them just as much as I miss my blood relatives.

I love you all. I look forward to seeing you all again. As soon as possible.

As soon as possible.