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!!!

Summer is here!

Okay so I have had been feeling pretty good for about two weeks that I was taking higher doses of prednisone. I even went camping at Garner State Park in Texas for 4 days. I was out tubing on the river with my kids every day and I even had enough energy to cook for them twice a day. It was so much fun and I felt like a "normal" mom.  I expected it to kick my ass since I was out in the sun so much but nothing. I felt as great as a person with Lupus could feel!

Then the day before yesterday,  I went bowling with all the kids for my mom's birthday. Believe me that it is not normal for me to have the energy for so many activities.  Anyway,  the next day I woke up with so much joint and muscle pain I could barely move! I also got sciatica!  Now Lupus kicked my ass! The pain is not going away; not with Vicodine or Tramadol! I didn't even think I was exerting myself.

It sure was nice while it lasted! I have to say that at least I don't have to go to work! It's summer: the teacher rehab!

Prednisone: My Frenemy Part II

As I have said before, I am a teacher and I am two day from being free!!! Yes...I am 48 hours (give or take) from being able to sleep in and have to deal with my own kids for a change! I had been feeling so terrible lately with extreme fatigue, but I started Prednisone again last week and it gave me the necessary boost to make it through 8th grade Prom decorating, Powder Puff flag football, my daughters dance recital, 6th, 7th, and 8th grade students at the end of the school year, and everything else the last week of school brings for teachers. I have made it through 7 straight days of work without calling in. In fact, I haven't had to call in since starting the Prednisone.


Now, on one hand this "miracle drug" has allowed me to go about my life almost like a normal working mom these past two weeks, but on the other hand, I am at the highest weight ever in my life. I hate to dwell on this topic because it shouldn't really matter right? It does matter though. I just looked at my picture in the school yearbook and it is just depressing. I looked round and puffy and pretty much exhausted. It is B A D! Depression is something I struggle with so often and this weight gain and the physical changes I have gone through in the past two years do not make things easy. I had a picture of myself and my husband from two years ago on my filing cabinet and one student stood there shocked and said, "Wow...you looked so...so....," and couldn't quite finish that statement out of fear of hurting my feelings but I knew what she was thinking. I looked pretty and thin and now I don't.

Well, I guess that is life. A struggle to weigh the good with the bad. In order for me to get out of the house and work and take my kids to recitals, I have to deal with a lower self-esteem and bigger clothes. But, I do still wish I didn't have to make these choices. I wish I wasn't sick with this horrible illness. I hope that everyone out there realizes how lucky they are that they don't have to make these choices and appreciate their healthy lives.

Adults Don't Make Messes

 This week I was able to accomplish more things than I have in a long time! I planned for the 8th grade Prom and pulled it together, I played in the Powder Puff football game, I shopped for an outfit for my son for Prom, I took my daughter to her Saturday recital rehearsal, took my daughter to her recital on time, and helped my niece and another dancer get dressed backstage! I almost felt like the mom I used to be.

Of course, I couldn't make it to the actual Prom to chaperone because I was beat from the day and didn't take my daughter to her weekday rehearsals because I was tired from work. Every day, I go home and go straight to bed and rest. Then I eat dinner, in bed, and stay there until I have to go to work the next day. I had been feeling so depressed lately because I felt I was depriving my kids of a "normal mom". I mean, my mother has to come to my house every day to clean for me and my sister helps me out by taking my daughter to dance during the week, but my 4 year old daughter made me feel so much better.

She and my husband were both sitting with me in bed. My daughter was telling my husband how much she wanted to grow up and be an adult. Of course my husband told her he wanted her to stay his baby forever, and in order to convince him it would be a good idea, she said, "Adults don't make messes so then it would be good because I wouldn't make a mess anymore Daddy." I asked her why she thought adults don't make messes and she responded, "Adults come home and go straight to bed, take their medicines, watch TV and stay in bed so the never make messes."

I knew she was talking about me and immediately felt sad for my poor baby who thought all adults do what I do so I said to her, "You are talking about Mommy not all adults," and she responded, "That's okay Mommy, I love you! You are the best mommy in the world!" Somehow, she knew that I was sad and she said exactly what I needed to hear. She knows at four years old that I am sick and doing the best to be her Mom that I can. AND, she loves me and appreciates me all the same.

So, even though I am not the perfect mom, I am their perfect mom. I need help from others, but it doesn't make me less of a mom, or less of a woman. I know a lot of women with Lupus out there want to be the women they once were before Lupus, but it is not possible. What we have to do is stop trying to be what we were, and strive to be the best Mom with Lupus that we can be.

Wow I'm fat?!

This is the A-Ha picture-My face looks like a pancake!

Okay so I haven't blogged because of course I felt like shit yada yada yada.  But I came to a startling realization today: I'm fat.

Don't even laugh!  Have you ever noticed you were gaining weight but then all of a sudden you look at a picture of yourself and say;  "oh my God I'm fat!?" That is what happened to me.  I know what you are thinking...don't you look in the mirror?  Yes but I didn't see myself SO big.

So yeah I'm a little depressed.  In my whole life I have gone up and down in weight and it wasn't that big of a deal.  I have never dieted or gone to the gym. I walk and do yoga, but even at my heaviest (during 5 of my pregnancies) I never surpased 160. I have now reached 180. Oh and I am not pregnant.

This is me in 2008-when I looked normal :-(

Symptoms Today

• Crazy itchy face, neck and arms
• EXTREME FATIGUE
• nausea
• Slight joint pain

I'm grateful:

• I took my daughter to her first ballet photo shoot
• I made it through four days of work

Overlapping Flares

Symptoms Today:

1. fatigue (of course!)
2. Sinus Pain/Pressure
3. Stiff/Achy Joints
4. Dry Itchy Skin
5. Weight Gain (Is that a symptom? I feel my pants get tighter every day!)

Today is actually not so bad. This past weekend, I had a migraine that started Friday night and ended Monday night. How many hours is that? 72 hours?! I had to miss work on Monday but I am thankful that it went away by Tuesday because my students are STAAR testing this week. (Texas state assessments) Believe me it's a big deal and I had already been getting crap about "possibly missing work" on these days as if I pick and choose when I get sick.

So I have been stuck all day in the class watching students take a standardized test and I am not allowed to even read while they test. (4 hours long!!!!) So, naturally I was falling asleep. Even while  I walked around the room my head would start to plop down. Thank God I had snacks.

Well, as I was walking around trying to keep my eyes open I started to think of my flares and they remind me of something terrible I experienced 5 times: childbirth and contractions. I remember they hooked you up to a machine and you could see the contractions on the screen. It would start to rise kind of forming a steep mountain peek then fall as the pain subsided, but the problem I started noticing with my contractions was that one was not even over before another one began! That is how I feel with these flares. Last week right before my migraine episode, my mouth became full of mouth sores/ulcers. Then came the migraine, fatigue, etc, etc... But, I never felt any relief or rest from the flare before. Is this happening to anyone else?

Things I am grateful for today:

• I got out of bed this morning
• I dressed my son and put him on the bus
• I made it to morning duty semi-on time
• One student actually read a book and asked to borrow it  (Yay! You can't imagine how happy it makes me)
• Of course, my husband and kids
• My mom because she wakes up early to drive to my house to take care of my daughter while we work

As a matter of fact...

Alright I am going to get it out of the way and list all the things that are wrong today:

• sore throat (strep again?)
• fever blisters (ouch!)
• cough
• congestion

Okay, so I sometimes feel bad for being such a negative Nelly and complaining all the time in this blog, but I really can't complain to my loved ones, friends, or co-workers. So, this is my outlet and it is a fact that every damn day SOMETHING hurts! I think it is important to let everyone know what a struggle it is to constantly live with pain. IT IS ALWAYS THERE!

Maybe that is why there isn't a cure yet....as women (of course men get Lupus too) we tend to ignore our own shit to take care of everyone else, and we also downplay our symptoms. Studies show that Lupus patients downplay their symptoms even to their own doctors. It is true though. When I go to the doctor, I kind of give him the top three things that are bothering me because there are so many things I can complain about,

If you are out there suffering, let people know; let your doctor know EVERYTHING. There is no shame in stating what is a matter of fact.

And, in the attempt to be more positive, I am going to list the positive things in my life that bring me happiness. Remember Oprah and the Gratitude Journal? These are the things I am grateful for today:

• I still have a job
• I got up this moring
• I brushed my teeth, combed my hair, AND put on make-up
• My mom who helps me so much
• less Lupus Fog today
• My husband puts up with me (and I can put up with him even with the Prednisone)
• My kids are healthy (evidenced by the constant racket and mess that they make)