Fight Song

After my last post, I found this song, which I hadn’t yet heard. Yeah, I don’t listen to music much anymore, as I always have audio books on in my car.

But man. This song. First time I heard it, so many tears.

It was what I needed.

It is time to take back my life and move forward.

E&O

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Tired.

I’m not sure if I can get any more tired.

Daily, I struggle with the pull of my own body’s failings.

How do I shake it off, when each time I think I can, something else is first added on, and then I have to start all over?

The drag of each next appointment. The lack of motivation to work. The slow removal of the ability to work. The diminished quality of my work.

How can I convince myself to continue with school and work, when I can barely keep my head over the “to do’s” continuously trying to drown me? I do I keep up my effort to stay above it? How can I keep up?

The pain is growing. Even just weeks ago, I considered my pain more of a “come and go” type of pain, with a very low level of continuous pain. It has changed. For weeks, the continuous pain has been steadily getting higher on the scale.

I know mine is still nothing compared to so many out there like me, but pain is personal, and mine is overwhelming me. It exhausts me. It makes it difficult to think, to talk, to open my eyes, to smile. I’m tired.

I’m not sure if I can get any more tired.

But then again…I have another appointment tomorrow.

 

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