Toxic

It has been some time since I have last posted. As I mentioned before, I’m working now. Since the last post, I was hired on as a permanent employee after more uncertainty. The work can be fulfilling at times, and painful others. I struggle to make it to the end of the day sometimes. I truly think I could have an amazing job. I think that I could help people and learn a ton. I try. Hard. But, it is difficult with leadership that is condescending and flat out mean. I am continuously struggling to stick with it. I hate to be a quitter. I hate to leave some of the people there, because we all need to help each other. I’ve never been in such a toxic environment though. I have never seen so many people afraid to speak up, afraid to tell this one person how much they are hurting. When nearly the whole office get together to vent about how a leader has berated them and made them feel belittled, useless, unable to do anything right, and has even put several people in tears, it feels like a support circle of emotionally abused victims. Never in my life could I have imagined working in such an environment.

I’m tired. It is exhausting. It reminds me of basic training, when the instructors purposely tell you the wrong thing, scream at you for no reason, make you do things that really have no purpose, just to keep you busy. But this isn’t the basic training or even real-world military. It is a non-profit organization meant to do good for people. So why are the employees so poorly treated?

In my studies, everything I am learning is related to leadership and management of organizations and employees. I learn about some great leadership practices, and wish that I could share them at work, but that is unrealistic. Especially since most have absolutely no idea how much I am actually capable of, and they never bother to find out, or even just ask if I know how to do something before just assuming that I don’t. I am no idiot.

Perhaps trust would allow for some good changes. Trust your people. Give them some freedom to be creative, to show what they can do, to really shine.

So I think I just started rambling a bit much, but it has just been a hell of an experience so far.

Until next time.

E&O

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

 

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.

Dream Hard

One of the most important thing to me is to be able to dream. Some of my most memorable recurring dreams involves flying. Flying in a dream is the most freeing, amazing feeling. There have been some especially difficult days that have left me wishing for my flying dream before bed. I close my eyes and imagine myself standing on a cliff with the wind blowing, keeping me standing, leaning slightly forward. As I am standing there, I let my body relax and imagine being in the sky, able to go anywhere. And then I jump.

The exhilarating freedom is beyond compare.

When I wake up, I keep my eyes closed, willing myself to go back to the skies.

But in life, we need to be allowed to dream. Not just in sleep. I dream about making a difference in the world, about making a good, comfortable, happy life. I am working toward it. Each day, I try to stay on this path of trying to better myself. It is the reason I have been in school, well, forever. Every time I could stop, I don’t want to. I really hope that after I get my graduate degree, I can feel done with school.

Part of the reason it has taken so long to finish school, is the fact that I changed my dreams several times. Dreams don’t have to stay the same. But I think if you want to change them, you have to REALLY be sure that you want to change. I am one of those people that can generally do well at a lot of things, and I am very interested in learning about lots of different things. It is really hard to find something you are passionate about when you have interest in everything. I have found that in my life there has always been one thing I kept going back to: language, writing, reading, words. With my medical concerns, I have had to make some changes in my life. While I am not pursuing teaching anymore, I have found something that I haven’t lost interest. I look forward to learning. I want to read my textbooks, to research about it. I know I have found my place. I never would have found it, if I didn’t allow myself to dream, to dream HARD.

Additional note: I never would have been able to dream hard without others in my life respecting my dreams, and helping me find my way. Thank you.

New Doctor. New Problem.

I dread going to doctor’s appointments, especially with new doctors that need to run initial tests. Since we moved here, it took awhile to get settled and to be able to get referrals for all of my necessary specialists. With all of these specialists, I have already seen doctors and had a plan for treatment, but somehow, I always seem to get something new. After scheduling appointments for nine different specialists, I had to be seen again by my primary doctor. She then ordered some thyroid blood tests and an ultrasound, sent me to a NEW specialist, an endocrinologist. I knew from years ago that my TSH levels tend to be low. Not very low, but still lower than the normal range. However, my FT3 and FT4 levels are usually normal. Back then, they just said “possible early multinodular goiter” but with little to no follow-up. The other day, I got a new ultrasound, and I am waiting to see my new doctor. The tech, though usually they don’t speak, told me he found a cyst, at least one nodule, (may have been two based on what I saw), and a slightly enlarged thyroid (goiter). He ended with, “I’m interested to see what the radiologist says about this. She will look at it by the end of the day and we will fax it to your doctor before we leave today.”

Um. Okay. Is that supposed to freak me out? Because it is 2pm and you are telling me your are going to have this done in two hours, when things like this usually take a few days?

So since it is the weekend, I know must wait until the doctor gets the fax and calls, and then wait until I can actually see the Endocrinologist.

I. hate. going. to. see. doctors.

There is ALWAYS something to add to my list.

On a happier note, my son had his follow up with his cardiologist (his open heart surgery was last year to close a hole in his heart), and he is healthy and doesn’t have to go back for 2-3 years for another echo. At least he doesn’t have the same problem with doctors.

Preparing to Work

I used to work in logistics while active duty in the Air Force, which is likely part of the reason my body is so messed up these days. When I got out of the military I spent about a year home with my kids, then still very small, a newborn and a one year old. Just after my diagnosis with Ehlers-Danlos Syndrome, I got a job as a Secretary in the base medical clinic. Shortly after I started, I was finally able to get some of the initial tests and specialists appointments due to my EDS diagnosis. With each appointment, something new was found. By the time I left that job to move up here, my diagnosis list had grown exponentially. And it seems like they all include the phrase, “you’ll be dealing with this the rest of your life.” Gee. Thanks.

With Ehlers-Danlos, I also deal with Sjogren’s syndrome, dysautonomia, herniated discs, PCOS, Sleep Apnea, Neuropathy, high blood pressure, IBS, and more. Let’s just say, I see about 9 or 10 different specialists, with at least 5 of them on a regular basis.

Going back to work always brings with it certain challenges. I love to work. Being at home these last several months gets me fidgety. Not that I haven’t been busy, I have been studying for my master’s degree. I have so much to do with school, that work will probably incredibly stress me out. I just really like the feeling of working, learning and earning money.

This great opportunity came up for a temporary position where I can learn so much in relation to my degree, and I am excited to start on MONDAY. With extremely short notice, it is a little scary, but I’m just glad I dyed my hair back to a natural color a couple of weeks ago. So now, I need to prepare myself to be able to do everything. I need to prepare for the extra stress on my body, my mind, even less sleep than I get already, only being able to do school work late at night and weekends, and the drain of potentially dealing with dramatic and petty people.

Some of the things I am doing, is getting as far ahead in school as I can right now, and setting a to do list that allows me to check off every assignment, every reading, every lecture that I have to do. This app, Wundlerlist. is working perfectly for me and allows me to make lists of different types of tasks. I have started using it for other tasks I generally forget easily. Lists are extremely useful for someone with brain fog. Also, I am doing all the cleaning and laundry that I can manage until Sunday. Sunday I am going to relax as much as I can, maybe use that day to do as much homework as possible, because Monday is going to be a crazy new schedule.

What do you do to prepare for work or to help with the stress of working or for changes in schedules or activities?

Illness Army: Diagnosis of a Chronic Illness

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This post was featured in the Illness Army Series by Cass at Indisposed and Undiagnosed. Please view her blog for some great posts from many suffering from chronic illnesses.

 

Diagnosis of a chronic illness.

At first, there is some relief. You think, finally I know what is going on. My questions are finally answered and someone actually listened. Now I can move on.

But sooner or later, depending on the person, realities of what the diagnosis means sinks in. For some, a little at a time, for others all at once. Sometimes triggered by events, sometimes by people, sometimes out of nowhere at all. Things will forever be different.

These times can be extremely distressing, exhausting, terrifying, depressing. But, the important thing to remember is you can still be happy. You can still do things, they may just be different things, or the same things but in different ways. With the right support, anything is possible.

Here is a list of 10 things you can probably still do:

  1. You can tell people you love them. You don’t have to be able to do everything for them. You don’t have to be the one to cook or to clean or to fix things around the house. You may not be able to show them love in ways that you used to. But, you can find new ways to show them. And even in the hardest of times, you can always just tell them that you love them.
  2. You can smile encouragingly at others that may be going through a hard time as well. If you see someone getting out of their vehicle, parked in the handicap spot, you can smile at them. Even if they don’t look sick, you know they could be going through so many things, and with all of the other rude people in the world, you can be the one to brighten their day.
  3. You can accept help and support. Others want to be helpful. You may not be the type of person to ask for help easily, but sometimes all people want to do is be able to be there for you, to be able to help in any way possible. Give them that chance every now and then. It will help both of you.
  4. You can follow doctors’ orders. This is a hard one sometimes, but it can make a big difference in your everyday health, pain levels and attitude to do the things the doctors suggest, whether that includes just taking your medications on time, doing exercises, eating healthy, keeping a positive attitude, or just making all appointments.
  5. You can kiss your family. Love them. Kiss them. Hug them. All the time. Don’t hesitate to give them love.
  6. You can laugh. Laughing can be healing. It can improve everyone’s attitudes. It can change your whole day for the better. Laugh whenever you can.
  7. You can live. You can live your life. If something is keeping you from doing something you want to do, find another way to do it. If walking through the store is too much, don’t be afraid to use the motorized carts. If you want to take your kids to the amusement park, plan ahead and do it. You may have to rent a wheelchair or cart, or bring a walker or cane, or take tons of breaks and drink tons of water, but you can do it if you really want to.
  8. You can help others. Even something small, like a dollar in the donation can at the store, or something big like heading a fundraising campaign all make a difference. Sometimes the simplest things can be a great help to someone else. Try doing something once a day that is purely to help someone else. Helping others brings joy.
  9. You can dream. Dreaming gives us a chance to live a different life. You can fly, swim, jump, walk, run, or do anything you want in a dream. You don’t have to wait until you are sleeping. You can close your eyes and just imagine it. See it happening.
  10. You can be happy. Sometimes people think that because you are smiling, that means you aren’t really hurting or sick. They just don’t understand chronic pain. I don’t think anyone could truly understand chronic pain without having it. A life of chronic pain means that our pain tolerance is pretty high, and that sometimes we can still walk and laugh and smile, even though we are actually dealing with some significant pain. We have to. You can live happily if you want to. You can smile and laugh and do what you want. Don’t let the actions and comments of others dictate how you live your life.

Diagnosis of chronic illness is hard. It is hard for the one diagnosed, for the family, and for the doctor. As long as everyone is understanding and supportive, everyone can still live a happy, loving life. You can do things. They may be different things now, but you can do them.