Business-Insider-lupusexposed

Okay so right now at this moment I am a little depressed. No, actually very depressed. It seems that every day I develop all sorts of new symptoms that I have to deal with on my own. I am not only a mother and caretaker for 5 children, but I am my own caretaker. I sound like such a whiny little girl, but I have to admit I am so tired of taking care of others when I could barely take care of myself. No one asks me how I feel, and if they do, they don't listen to the response; they just ask to be nice.

 My husband doesn't ever ask. It is as if nothing is wrong with me. He even got annoyed with me because I sent him to the pharmacy to get my prescriptions and it was over $100 as if I haven't been taking a bag full of pills every day for two years now! Really?! I am alone in this endeavor and it is truly depressing. The symptom of this week was seeing colored flashing lights out of my left eye. This happened the day before a major migraine so through simple deduction and a Google search, I came to the conclusion that I was experiencing what they call auras. Anyway, I will have to ask my doctor of course, but no one in my life cares to hear about this so I am completely and utterly alone but surrounded with people who claim to love me. 

School has begun and I started this school year on a positive note. I was given a better job placement-7th grade ELA and my students this year have been great so far. So, what could go wrong right?

Well, getting through the work week has gotten to be almost impossible  for me. This week I was out on Tuesday, Thursday, and Today. I am completely exhausted and unable to get the necessary rest. At night, my mind races with ideas, lists, problems, lesson plans, decorating ideas, etc. I fall asleep and my mind continues to race even while sleeping. When I wake up, I am exhausted and lying in sweat soaked sheets and I struggle with the decision of calling in sick or going to work. I argue with myself; telling myself that I need to go to work and then convincing myself that I need to rest. All the while, feeling completely overwhelmed by even the simplest of tasks: getting my kids dressed for school. This morning, I called my mom and told her to keep my 4 year old daughter at home instead of taking her to school, because I couldn't bring myself to get her dressed! What a bad mother Lupus has made me!

So, what could be causing this? I know that I haven't been taking Xanax before sleeping because I ran out and hadn't called the doctor for a refill. I called it in this afternoon, but I am certain that it is just the fact that I am working that is making me so sick. Right now, I feel somewhat good, but I slept all night and all day until 1:00 pm. It is insane that I need this much rest in order to have a few hours of normal. God help me!

The other day I woke up in the afternoon after a long sleepless night and saw a message from a friend asking me to go to lunch.  I messaged her and apologized for not answering and made plans to go to lunch the next day.

Well, that evening I couldn't sleep and ended up falling asleep at 7:30 am. Can you guess what happened?  I didn't wake up in time for lunch. In fact,  I woke up at 6:00 pm. I felt like such a horrible friend especially after I grabbed my phone and saw her messages. I was too much of a coward to call her so I sent her a message trying to explain.

I tried to make up for it by asking her out for dinner, but even if she had said yes I don't know if I could have gotten out of bed; my body ached so badly! She was going to go running so she couldn't go to dinner and she said she understood but I felt like such a flake.

I don't have many friends left, not only because I am married and have children but now that I have Lupus,  I have almost lost them all including family. My family is still my family but many of them, like my cousins, are no longer close to me. We have grown apart.

I have missed too many birthday parties and get togethers. I wonder if this happens to others who have Lupus, sjogrens syndrome,  or fibromyalgia or people like me who have all three. I just wonder.

Well I have a third chance to make it to a late lunch with my friend tomorrow at 2 pm so wish me luck! 

GRIPES

◇extreme fatigue

◇insomnia

◇joint stiffness/aches

◇stomach issues

GRATITUDES

◇It's summer and I don't have to work! (Teacher)

◇My children are healthy and happy!

◇My husband is being very supportive! 

Okay so before I start bitching, let me start with the positives. (For the sake of positivity)

Gratitudes
◇ I woke up before noon
◇ I left the house today
◇ I walked 2 miles last night
◇ I made a boutique style bow for my daughter

So now that I listed the good, it might be easy to see what might be included in the bad. Last night, I went for a walk with my husband and jumped from walking one mile to two. I felt so proud of myself, but it is at these moments that Lupus reminds me that I am not normal. It literally kicks my ass as if to say, "hello, did you forget you are a sick person? Don't make me remind you again!" My body feels as if someone punched me all over.

I seriously want to, and have to, lose weight. I wanted to start walking every day in order to lose the 30 pounds I gained this year, but it is so difficult when your own body attacks you. So what have I learned? Take it slow and easy STUPID. I am determined to stop blowing up like a whale so no matter how many pills I have to pop tomorrow,  I am going to walk at least a mile. I am going to walk a mile every other day and then move on to a mile a day. I am going to take it slow but I am going to keep moving. This disease has robbed me of so many things, but I am going to fight it every step of the way!

Gripes
◇ fever
◇ joint aches
◇ muscle pain
◇ stomach pain
◇ fatigue

Summer is flying by.  In case you haven't read any of my other posts, I am a teacher and am on a two month vacation from work! It is really flying by way too fast!

I have managed to go on two trips. One with my family to the river and a couple trip to New Orleans.  I am pretty satisfied with myself-that I was able to endure the activity and survive the weeks after.

Of course,  getting to sleep in every day and not having to go to work sure makes things so much better!  I have been working since I was sixteen years old, but it would make the quality of my life so much better if I didn't have to work anymore.  It is so hard to be a teacher and a mother with Lupus.

One thing that has been helping me other than tons of rest is gratitude. Being able to just look at the little things in my life that bring me joy and being grateful for the things I can accomplish have made me so much happier.   So here is a list of my "gratitudes":

Gratitudes
☆I walked one mile today
☆I made dinner instead of take-out
☆I wrote a blog entry

Okay so I had a rheumy appointment today; it was a make up day because I missed my last appointment because I was too busy cleaning my classroom. Anyway they made it very clear I would only see the PA because the doctor was booked until August so I was really only expecting refills.

Now, I am fairly new to Lupus and I have often left my appointments with more questions than answers. So, I was ready to talk to the doctor about the last shots he gave me: I felt so much better almost immediately after!  Here is the really stupid thing about this: I have no idea what he injected in my body!  All I knew is that I was in pain and wanted relief and I blindly asked 0 questions! 
This time, I asked him right away because I wanted him to know it qas helpful for about 3 weeks and then I was back to normal. Guess what it was...

Methotrexate and some pain killer I already forgot the name of! Damn this Lupus fog!!!!

Okay, so we talked about the health care crisis and the decline of education in the US (He loves to talk) and then he checked me and walked out of thw room. So I am sitting there waiting for my prescriptions and a guy comes in and informs me I am getting 5 shotsif I am willing to pay $57 out of pocket.  Okay! So when he comes back, I ask the tech what I am getting (This time I am asking damn it!) and he says four shots of methotrexate (2 on my hot spots on mu upper back and 2 on my lower back) and a pain killer on my arm.

Wow! That was three more injections than last time and I know absolutely nothing about this medication.  By the second injection, I was about to pass out. I started to feel hot, light-headed, and nauseous! I had to sit and take a break because I was afraid I would pass out!

So when I got home I looked it up and WebMD had some extremely harsh precautions.  Johns Hopkins Medical Center was a little less scary. So I hope all goes well because lately my life is spent in bed. I love my kids and am grateful for my life but pray to God every day my life changes. Let's hope and pray this works for me!

So far I have felt a little nauseated but that's hopefully it...we'll see! Please add any insight or experiences!!!