Sleep….. Why have you forsaken me?

Sleep….. Something many of us really enjoy doing. It’s a good way to pass the time if you are bored. It is how our body refuels itself for the next day. It’s just plain good for us. In fact most doctors will tell you that you need at least 8 hours of GOOD sleep. Good sleep is a whole new ballgame. I’m going to make a generalization here and say that most people with Lupus or Fibromyalgia or many other illnesses have trouble with sleep.  We as a population are the ones who probably need it the most.  Lack of sleep can cause so many problems for all of us. It can cause difficulty sleeping, errors at the workplace. And just plain make you feel like crap.

It seems to me like my insomnia comes in waves. I do really well for awhile and am sleeping at night like a normal person. And then BAM something hits and throws me totally off.  Like for the last two weeks. It is usually 3 in the morning before I can finally go to sleep, and then I only sleep for a few short hours.  It seems like being sick with the flu is what triggered this episode. But it is so frustrating when you just lay there and look at the ceiling and can’t go to sleep.  Lately I have tried everything to sleep. You name it I’ve tried it. Hot baths, soothing music. Something has to change especially if I am going to go back to work soon. I will need that sleep.  So my goal for today is to research methods to help you sleep without taking a sleeping pill. So be watching for that post with tips and tricks to make sleeping easier.  Now it’s time for me to take a nap.  #lifeofalupie


Job Hunting with a Chronic Illness

Job hunting alone can be daunting, now add a chronic illness and it can be downright scary. There are so many variables that can make the job hunt more difficult. How you are feeling daily to actually look for a job can make the hunt difficult. Then you add things like physical manifestations of your disease such as a limp, or being unable to walk without an aide. Or even your weakened immune system dictating what kind of jobs you might be able to consider.

So what are things we can do to make job hunting a little easier on ourself and more productive?  Below are some recommendations that can do just that that were found while looking for ideas to improve my own job hunt. Many of the suggestions came from, and I will link the direct sites at the end of the blog.

1.  Talk with your medical team before starting to look for a job.

They may have restrictions for you that you are unaware of that might dictate what kind of jobs you could apply for. Also, maybe there are medication changes that could be made. For instance maybe you will need to cut your pain pills so they don’t cloud your judgement. So they might be able to recommend options that could work without jeopardizing your safety.  There also might be other treatment options available for your disease that you are not aware of. They might also be able to get you started with some physical or occupational therapy that would make working easier for you.

2. Network 

People in your profession might know of openings before they are actually posted. So they could be a great benefit to your search. Just remember that you don’t want to pester people in the process.

3. Find a way to STAND OUT in your field. 

This may be one of the most difficult of the options discussed. As people with Chronic Illness often have low self-esteem due to the things that they have gone through. That being said it will be important that you find a way to make yourself stand out to the hiring manager or company.  This can be done by finding a way to make others know how great you are, without boasting.  (If you do have trouble with self-esteem you might want to consider seeing a counselor or someone that could help you find healthy ways to build your self-esteem.)

4. Contact a Career Counselor

This could be helpful if you are changing professions or just need help finding some options in your preferred profession. They can also help you create a resume and cover letter that will help to make you and your skills STAND OUT.

5. Develop a thick skin

This will be most important because you are not going to get every job you apply for or even interview for. So it will be important that you develop a thick skin and you don’t get hurt by every rejection. Rejection happens to all of us and is just a part of life.


There most likely will come a time when you need to disclose your condition(s) to an employer. However, the application and/or interview process is not that time. Employers are always looking for a reason to delete Candidates from their list of options so they can narrow it down to the best person for THEIR job. It is best that you keep your condition to yourself until/if there comes a time when you need to talk about accommodations for your new positions. The only time it would be okay to bring up your condition(s) would be if it would directly relate to how you will/would be able to do the new job.

Hopefully you find all of these tips helpful if you are looking for a new job or career. They have the potential to change the job hunting game.
For further information on this topic please check out:




New Year….New Me

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New Year….New Me.

With this being the first of 2017 this blog is a goal of mine for the year. Not a resolution, because I do not believe in resolutions. And i can NEVER keep them. But blogging is something that I want to set as a goal for this year. There are so many things I want to talk about and want to get out there so I think this will be something I can keep up with. At least I hope……

2016 was a REALLY bad year. And it ended terribly as well with me having the FLU. So I am starting 2017 with the flu which is not how i wanted to start the new year. If there was something bad that could happen it did. I started having hemiplegic migraines in March and was in and out of the hospital and the ER the whole year. I was seen at Barnes in St. Louis, and at Mayo. And nothing could be pinpointed for a cause of the migraines. The medical bills grew and grew and my income shrank. I finally had to quit work because I was taking off more days than I was working. So once I stopped working that meant I had no income. Which meant it was impossible to pay my bills. So sadly I had to move out of my apt and move back in with my parents. This is not something you want to do at the age of 31. However, I am so very grateful to have such amazing family. Without them I have no idea where I would have ended up.
My dogs have always been my life. They were my kids, my babies, my everything. When I moved home I was only able to bring my Max because my parents already have 4 dogs and didn’t really need two more. About two weeks after Max and I moved in with my parents in early September he got sick. At first the vet thought it was bronchitis or an upper respiratory infection. However, he wasn’t getting better. So I took him back and they did X-rays and found that he had severe congestive heart failure. I could have put him on meds and prolonged his life but it would not have been a quality life for him. So I chose not to do that. I chose to put him to sleep. That was probably one of the hardest decisions i have ever had to make. He was my right hand man. He knew when I was sick, sometimes before I did. And would lay his head wherever I hurt. He was my life. I still miss him so much to this day. I don’t know that I will ever get another dog because he was so special. Jesse went to a coworker of my moms and ended up going to another family member of hers. So I have no idea where she is now. I miss my babies so so much.
As far as my health, it is still not back to where I would like it to be. I still have migraines. And my adrenal glands still haven’t come back to where they should be so I can come off the daily steroids. And because of that my blood pressure will bottom out. And It causes me to be extremely fatigued and confused at times. I still have a LOT of pain daily from the fibromyalgia and lupus and they cant seem to do anything to help it besides what I am doing. I applied for long term disability through my former employer and was denied TWICE. They say they can’t find any reason that I can’t work. I also applied for SSDI and was denied as well. But I was told before I applied that this is pretty common. Most people have to appeal at least once before they are approved. So I have hired a lawyer and am appeal my denial. That being said I am looking for part time jobs currently and hoping to get back into the work-force. I am so bored being at home and I miss my job.
One thing that has helped me throughout this entire horrible year is the Lupus support group that I started a few years ago. They are a fantastic group of women (and men) who go out of their way to make sure you know you aren’t alone. When you have chronic disease such as lupus or fibromyalgia you need support. You need people you can rely on. People you can run to when you feel like your world is crashing down. And that is what my group has been for me.
In 2017 I have many things that I want to do. I want to work on becoming more healthy. Not so much focusing on my weight, but working on eating better and working out more. I want to take all the sugar out of my diet. And eat more veggies and fruits and drink lots more water. I want to walk more and my goal is to participate in a 5k by my birthday in may. I may not run it but I would be happy to walk it. Because there is NO WAY I could do that now. I want to blog at least once if not twice a week. But I want them to be more than me just writing about me. I am going to work on this becoming something different than it is now. I have yet to decide what exactly that will be. But stay tuned to find out…… So here is to 2017!!! I am determined to make this the best year Ive had in the last decade!!!! So join the ride…….