When your gut is telling you something

http://www.mollysfund.org/2015/11/lupus-and-the-gastrointestinal-system/

Okay, so lupus brings on a myriad of gastrointestinal problems, but so does fibromyalgia and I have that too, and hypothyroidism and you guessed it, I have that as well. So, my I am navigating being sick as it comes. Let me tell you, it is difficult when you don't know what the hell is wrong with you and what illness is causing it and neither does your doctor. It makes me want to scream!

The worst thing is the chronic constipation. This last run lasted 5 weeks. That is right folks, 5 weeks without going to the bathroom for number 2. I was taking all the meds the doctor had given me from the previous time, along with fiber and water and nothing until today. It was only a few rocks but I felt a little better. At least it wasn't like the last time I had a dry spell; after 4 weeks of constipation I then got severe diarrhea and cramps.

Well, I am going to take today as a small victory but I have to see the gastroenterologist although I dread it. I find it hard to find the energy to get up and take a shower, forget about actually getting to my appointment and waiting for hours to see another doctor without answers. It gets to be depressing and demoralizing when doctors don't or can't help, but I know I can't give up.  

http://www.mollysfund.org/2015/11/lupus-and-the-gastrointestinal-system/

Lupus Fog- What a Bummer!

Since my diagnosis in 2011, my brain has slowly turned to mush. It used to be easy to work around. I downloaded tons of organization apps and didn't go anywhere without my agenda. But, aside from the constant pain and lack of sleep, losing my mind was what made me lose my job. I just couldn't keep up with my teacher paperwork and my mom responsibilities. 

So, now I stay home. I look at my day as a success if I am able to accomplish one thing...one goal. For example, if I am able to get up and dress my kids for school- to me this is a major accomplishment because I make my kids miss school due to my illness at least 3 times a month. Completing even one single inane chore makes me exhausted. 

This past Friday, my son told me he really wanted me to attend his last middle school football game. I hadn't been able to attend not even ONE game the entire season because I hadn't been able to get up that early in the morning, but I wanted to be there so badly. The next day, game day, I woke up early, and I sat in bed watching Netflix until I had a sudden urge to check my phone. I saw a text from my son telling me the game had been moved to 11 am and I was suddenly horrified when I realized it was 1 pm and I had missed it! I felt like the worst mother! How could I have forgotten about his game? It was as if someone had taken the Etch-a-sketch that is my brain and erased everything. 

Lupus, fibromyalgia, thyroiditis, sjogren's disease, and possibly scleroderma have changed my life drastically, but to lose my mind as well? I don't even feel like the same person. I am now the sick, cognitively-impaired, disabled  woman who can barely take care of herself much less 5 kids.

Lupus/Fibromyalgia/Sjogren's Syndrome Sufferer's Anthem

http://lupus-exposed.tumblr.com/post/131235168394/this-is-the-lupusfibromyalgiasjogrens-syndrome

Exceeding Expectations

Today I dropped off my son at school, I went to my daughter's school to order a shirt, I went to therapy,  I dropped off something for my husband at work, I picked up a form from my oldest son's school and I dropped off a prescription.

I was feeling pretty proud of all I accomplished until I spoke to my mother. She started asking me if I had done A, B or C. I was so angry at her! I yelled at her, "Mom, I could barely get out of bed most days...I do what I can!" "But the kids need your attention...."

I just hung up on her. Holy hell people can be so damn insensitive! What sucks is that she is the MOST supportive person in my family...including my own husband.

http://lupus-exposed.tumblr.com/post/127733181669/today-i-dropped-off-my-son-at-school-i-went-to-my

I Am Tired of Trying to Figure Out What is Wrong With Me!!!

I have lupus, fibromyalgia, sjogren's syndrome, and thyroiditis. Last night I was feeling horrible with severe joint pain, muscle aches, stomach cramps, diarrhea, a migraine,  and what I thought was a UTI. This was the second night in a row so I decided to go to the ER.

I drove myself to the ER, because all my husband could do was ask if I was sure I needed to go as if he didn't notice how much pain I was in. Anyway,  they ran tests and said my lupus was in check and all I had was a UTI. I don't understand why I was so sick then.

They had to give me morphine for my level 9 pain because all I had was Hydrocodone and it wasn't helping. Do any of you have any ideas.

No job yet

I have applied to so many teaching jobs and even instructional aid jobs but I have only gotten two calls. Two calls...two interviews...but NO JOB. I have been teaching for 17 years-15 of which I spent at the same campus, but after taking a few months off on sick leave, I can no longer get a job even as an assistant.

Boy do I feel inept and useless. It is as if all my qualifications and experience were erased by lupus, fibromyalgia,  sjogren's syndrome, or hypothyroidism. I was so excited to start at another school where no one knew I was sick- where no one looked at me like spoiled goods.

Oh well, if it is one thing chronic illness has taught me is to look on the bright side; I will work as a substitute teacher and God willing someone will see my worth and hire me.

Finding a Job

I have worked as a teacher for 17 years; 15 of those at the same middle school. When I first got diagnosed I realized that I needed to make changes so I asked my principal to be moved to a less stressful position. Now, if you don't know how most schools work, subjects that are tested are the most stressful and difficult mostly because a teachers success or failure impacts the rest of the school. So, the principals micromanage every move we make while other non-testing subjects are left alone to just teach.

 Anyway, the principal decided to move me into an elective called "Study Skills" where they took the lowest performing kids in 6th, 7th and 8th grade in my class so I could tutor them. Instead of teaching 5 classes a day they gave me 6; well, actually 12 in a two day cycle. I had 4 6th grade classes, 4th grade classes, and 28th grade classes of student who didn't "elect" to be in my class and were pretty much the worst behaved students in the school. Oh, and they took away a planning period.

Well, you could only guess that this year really brought the lupus out with a vengeance. I went to my principal again with information on lupus and begged to be moved to another position and he moved me to 7th grade ELA where the students have to take and pass a reading, writing, and grammar test. I have always been able to handle everything and anything but I started calling in sick way more often than they liked. By Christmas break, I knew I had to do something and when my coworkers started insinuating that I was faking, I decided to take the administration's suggestion to take a sick leave. I was out from January to the end of April.

 Then whole time I was thinking that I needed to return but they replaced me on week after I took my leave so the district placed me in an elementary school for the month of May. I was placed in a Read 180 position which was absolutely perfect for me. I was so excited because I was in a job I could handle. I was working with 4-6 students at a time for about 45 minutes. It was perfect because of my limitations but also because of my qualifications. I have 27 graduate hours in Reading so I felt God was opening another window for me. I was shocked when the principal of the school told me she had no job for me because she already had someone in mind for my job. That was it...the district then sent me back to 7th grade ELA again.

The next school year, which was 2014-2015, I only made it to October of course. My lupus was out of control. By this time, I had gotten diagnosed with fibromyalgia and Sjogren's Syndrome as well.
I went straight to Central Office and begged them for a compatible job even accepting a job as a teacher assistant but they never called me back. Then one day in April I received a letter stating I was fired and had lost my insurance....oh, and they sent my 15 year award with my husband.

Since then, I have been so depressed. I can barely get out of bed because of the pain but I know that the depression makes things so much worse. Here I am, 41 years old, and I feel thrown away. My family is struggling to keep up with our bill since I am on disability insurance and they pay me so much less. My insurance is about to run out so I am desperately applying for jobs in the closest three cities. I am applying for jobs as a teacher aide or a computer lab assistant. I applied for a job as a part-time tutor, but I have only been called back for one interview and they have filled the jobs I am overqualified for without even allowing me to interview!

What is going on here?! I feel that these districts are not calling me because they know I have a disabling disease through my past employer. Could this be the end of my career? I don't know what to do but keep applying, sending out emails, and calling the schools personally but it stinks that they hired one of my former students as a teacher with 0 years experience and I wasn't even interviewed.

If anyone thinks that people living with lupus or fibromyalgia ask for disability to get money out of the government, I hope this changes your point of view. I have to live with pain every day of  my life and now I have no way to make a living. I feel like an empty shell of my former vibrant, energetic and successful self.

The migraine is back!

Lupus and fibromyalgia cause migraines. I am beginning to feel one starting and I already know it will wake me up at 2 am. I just hope this one doesn't send me to the ER and that it doesn't last too many days. I think I need to start seeing a pain management specialist ASAP or maybe even a neurologist. The ladt thing I need is more doctors. I can barely get out of bed to go to the appointments I have now.

I need to rest after a nap!

Enough said.

It's Okay to Say 'No'!

I haven't written in forever. Let's catch up. I have been spending about 20 hours a day in bed with a good four hours to get up to go to the bathroom, eat, dress my kids, take my medicines, greet my kids, help with homework, and have some kind of conversation with my husband. Unfortunately, I don't do all those things every day.

It has become normal to skip eating because I am too tired to even get up in bed to eat it. I sometimes throw back some crackers only to take my meds. At one point I was addicted to eating Ritz crackers. 

The bad thing about living this way is that my family, kids, and husband expect for me to get better-to have better days, but I don't. On the better days I accomplish two or three things on my to-do list. On my very bad days, I hurt everywhere and can't even breathe. Shit, taking a shower is my exercise!

So, I decided to attend my first lupus support group to gauge others' normalcy and the three other women who showed up felt as bad or worse than me. Some of these women still make it to work sometimes. I haven't been in the classroom since September of 2014. 

After this, I felt happy. To hear those women and their husbands talk about things I face on a daily basis just about made my giddy. By coincidence we were all under the care of the same physician and had similar complaints. Years are going by and we are not getting better. One woman pretty much demanded Benlysta. 

Now, I consider myself a good communicator-someone who knows how express oneself without fear of being blunt and honest. So, why have I sat in countless doctor appointments and complained about my symptoms and went with the doctors' treatments with little to no questioning?! Today, I went in and tried to get the doctor to understand I have pretty much taken the same medications that were not working; in fact, I have only gotten worse since the date I was diagnosed with lupus! I asked about Benlysta and was told I had to have a positive ANA to qualify. I am not certain this course of treatment is the answer but I am willing to try anything DIFFERENT at this point! Well, I have had countless positive ANA's but they lost the last one and since I only get to see the rheumatologist 3 or 4 times a year, they had to run new labs today.

Okay, on the way out I get my next appointment date. June of 2015. So, I guess I have to wait until then to hear my results. Nope, not this time! Next week, I am going to be their worst nightmare.



P.S. A month ago, I was in the office to get my monthly prescription for Hydrocodone due to new regulations and a patient was losing her mind in the waiting room and moved in to the nurse's station and was screaming in anger and most importantly, in pain. She wanted to get her prescription, like me, and leave but that wasn't part of the process even if she had just been released from the ER. I felt sorry for her at the time, but I think from now on, I am not going to swallow my pain to be polite.