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. 

There's Nothing to Be Stressed About!?

So ladies and gentleman, Lupus is getting me in a new and fabulous way! The mild anxiety I was living with has grown into full blown anxiety attacks that refuse to go away. Anxiety like I had never experienced and without meds to boot! 

I seriously didn't know what to do! I had run out of Xanax, but wasn't really worried because I didn't really use too often. All of a sudden, last Wednesday evening I started to feel my chest shake. At first just a little but slowly it became very intense. Then, the pressure in my chest increase: it was like someone was sitting on my chest and I could barely breathe. I spent the night trying to sleep with my mind racing and my legs cramping.

So, the next day I didn't go to work in hopes of getting my Xanax refilled by my doctor. I called and they said they would call it in. Meanwhile, I spent the entire day crying and shaking like a drug addict needing her next fix. Then, when my husband goes to pick up my prescription they inform him I can't have it until November 1 because I had used too many of my pills too soon. 

I cried uncontrollably for about an hour and the shaking got even worse. This feeling is absolutely horrible and maddening! I know this isn't right and legal but I was losing my mind; I called a friend who also took Xanax and borrowed a few to tide me over. Oh my goodness, it was almost instant relief! I relaxed and finally slept!

The next day, I of course head straight to my computer to figure out what the hell is wrong with me. It couldn't have been just anxiety....but I think it was. I called my rheumatologist to find out why the hell they couldn't refill my prescription and they tell my they are referring me to another doctor who "works with controlled substances such as Xanax." The problem with that is that I am having these episodes at least twice a day from now on and I am running out of the meds my friend gave me. So what do I do? Go to the emergency room? I swear if I hadn't gotten that medicine, I would have gone because I couldn't tolerate that feeling one more moment! 

I remember when I was in bed crying after my husband came back from the pharmacy. He held me and tried to understand what was wrong with his wife. "Honey, what are you stressed about? There's nothing to be stressed about..." I couldn't explain to him that I had no idea what started this episode or the fact that I am stressed almost every day and this hadn't happened before. 

This is just Lupus attacking me in a different way. Nobody understands that one day I wake up with a migraine at 2 am, and the next day I can't move my hips. One day I have sciatica, the next day I wake up just fine-and by fine I mean still in pain but tolerable enough to take a shower and go to work. Now it's anxiety like nothing I've ever experienced. I am trying to stay positive here people, but this damn disease is making it very very difficult!!!

Methotrexate and it's Scary Side Effects

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!!!