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!!!

Feeling all sorts of things

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. 

On the lighter side, if that is possible, I started something new to fight against some of the brown spots that have appeared on my face these past two years. I am trying Clinique's Dark Spot Corrector and the Moisturizer hoping to look closer to my old normal self. I will keep you informed just in case you have the same problem. This are the before pics....

Back to Work....Back to Incompetence.

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!

Can you have friends if you have Lupus?

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! 

Lupus is back....damn it!

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!

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

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)

My cup runneth over!

Okay so you are never going to believe my weekend. Friday I barely made it to work right as the tardy bell rang. (I teach middle school) So I was hurrying down the hall trying to get to my class before the principal saw me when I get distracted by a large group of 8th graders congregating infant of the office; they definitely seemed up to no good and I noticed one particular student walking towards me. (who I might add hates me because I am always on his case) As I moved around him to avoid any trouble, I felt a foot hit my ankle and before I Knew it I was falling. I didn't even have a Chance to brace for the fall; I fell flat on my face And in that instant I fainted. I have been extremely weak lately because I an aneomic and I am flaring. So to make a long story short, I was taken to the hospital in an ambulance and I spent the entire day in the emergency room with a neck brace waiting for the doctor to release me. To make things worse at the end of the day the drugs he prescribed were nowhere as good as the ones I already have! That goes to show how little these doctors understand about Lupus.

Flash forward to Sunday -tonight- I have a Cold! Wah-Wah Wah-.- AND I can't go back to works until
Tuesday And although I held the rest I can't afford it! This illness is killing me financially!

So my life sucks? No! Although this illness has made me feel so lonely because no one really understands how I feel, people really surprised me. when I got out of the hospital and checked my phone there were a lot of text messages from students and coworkers asking if I was okay and wishing me well. Even my teenage son, who makes a point of torturing me, apologized for stressing me out! So in the end, even though I am in bed coughing and sniffling, I am grateful I am alive and surrounded by family and great friends. My cup runneth over!

This is Lupus!

I have started following a few blogs of really remarkable women with Lupus that deal with it with a wonderful positive attitude and they look great. So I think what the hell is wrong with me!?

I can't go a day without complaining about something hurting or bitching about something!

Today, I didn't go to work because I became overwhelmed in the morning when I couldn't find shoes for my daughter and Clothes for my boys to go to school. The anxiety mixed in with the fatigue just took over and I had to call in sick. Another missed day-another pitiful check next month! So, l went back to bed and no one went to school except my husband. He actually threw it in my face that he was paying most of the bills now that I was "Choosing" to stay home so often now. Of course, he didn't get the Kids dressed and take them to school because that is my job! And, he wonders why I am overwhelmed and sick and tired and anxious!

So here I am in bed again in an inside out school shirt that belongs to my husband because none of my Clothes fit Comfortably anymore while my kids make more of a mess in the house! Am I the only Lupus patient that doesn't have it all together and Can't Keep the house clean and the laundry washed and not in 2 giant piles (clean/dirty) and can't keep her husband "Satisfied"?

Phew! I am a hot mess as they say! l want to be positive but the only thing I could do is laugh at myself so I don't cry because now on top of it all, I have breakthrough joint pain even though I already took Vicodin and Celebrex and Tramadol.

This is me with Lupus moon face and all!

Two Steps Forward and One Step Back

So I guess I upset some people with my last post but honestly I meant no harm. I have only had the diagnosis for as year and a half but have been dealing with symptoms and doctors for over 10 years! Shit, sometimes I just have to laugh so I don't cry! So sorry if I offended anyone!

Anyway, so I was so happy because I had made it to work for 6 straight days and then Tuesday came and kicked my ass. I couldn't get up to get my kids dressed. My poor husband was asking where their Clothes were, and I bit
head off! (I think that was the Prednisone talking) Seriously, I didn't care how he did it; I just wanted them gone so I could sleep -and sleep I did! All day into the night!

I am trying not to get down on myself about missing work but just knowing that they are docking me over $150 every day I can't teach gets me feeling like a failure. So, I try and remind myself and my family that I need to take it easy so I can make it to work.

Today, I made it to work. I had a pretty good day; I only yelled at and wrote up one 8th grader who couldn't find his seat. (Again, the Prednisone?) I Came home straight to bed and ordered my hubby to get us dinner and I don't feel guilty about it. I am doing what I have to to survive. That's all I have to say about that!

Weight gain and tv

This year I have gained so much weight it is starting to bother me. I don't diet and going up and down in sizes usually doesn't bother me too much. But, I am now getting bothered because skin is touching skin! I see and feel my double chin and rubbing thighs so I decide to do what I never do: diet and exercise.

Even more crazy I started using a fitness app that keeps track of my calories and exercise so I could lose weight. now, everyone knows prednisone makes you gain weight but I just realized just how much.

As I was using this app, I thought it would be hard to stay under the calorie limit to lose weight but day after day I was under the allowed calorie intake without even trying! So I should have been losing weight right? No! I am gaining?! What the hell!

So I came to the Conclusion that it isn't just that I live in bed watching TV without exercising that is making me fat, it is the medicine. I mean really, not just as an excuse and doing what everyone suggests, eating right and exercising, doesn't always work when you have lupus.

I say lay in bed and watch TV till your hearts' content and don't feel bad about it! You need your rest and if Prednisone makes you feel belts to hell with it if it makes you fat. Make yourself comfy and join Get Glue or Viggle and get something out of your forced bedrest. I do! I have earned over 100 stickers on Get Glue, and I am on my way to earning fine merchandise on Viggle just by watching TV.

Strep Throat Strikes

I have been having trouble at work-I'm a teacher-with my absences. Obviously the trouble stems from my Lupus but a lot does have to do with me and my choices.

Both my son (6 yrsold) and daughter (4 yrs old) were sick with a terrible cold last weekend and of course I had them in bed with me as I gave them their nebulizer treatments every couple of hours as my husband slept beside me. He woke up complaining they had kept him up "all night" but I don't remember too many breaks in his snoring.

So then in the morning when he is getting himself ready for work, I am trapped in bed under my cement duvet barely able to move debating with myself whether I'd be able to get up and go to work or not. I lose the argument, as I often do, and call in for a sub. Seconds later, my husband steps out of the bathroom and realizes I am not getting up. He tells me I have to go to work (which I know) and that we need the money (which I know) making me feel worse than I already did. He realizes he made me feel bad and kisses me goodbye and tells me to rest. I go back to sleep and he rushes out to work while my 15 year old and 11 year old sons stay in bed asleep because I didn't wake them up to go to school and my husband never had that responsibility.

So what is wrong With this picture? Plenty, but I can't blame anyone more than myself. I give myself all these responsibilities and take on too much thinking I am still the same woman I once was but in the end, I have to acknowledge that Lupus is a debilitating disease and I need help. It is kicking my ass! I've been complaining that my family is in denial about my illness all the while trying to do everything as I used to and killing myself doing it-literally.

Maybe it wasn't a good idea to let my husband get away with not helping with the kids! Maybe I shouldn't make myself responsible for everything! My body is not exactly responding very well and what is going to happen if I die? The kids are going to stop going to school?

I wonder if all women with Lupus think they can do it all and instead make themselves sick out of pride? There must be a reason women more than Men are affected with Lupus!

Questions, questions, questions

I have not blogged in so long! My body has been feeling like I have been hit by a truck! I was dying from sinus pain and joint aches. Pretty much a terrible flare.

I still haven't figured out this disease/diseases completely so when I went to see my rheumatologist he gave me two shots (one for pain and one for inflammation) but I don't even remember what they were called! Of course, Lupus Fog makes forget me just about everything! He also put me back on prednisone.

Well let me tell you that the next day I felt such relief in my face! The pain I had felt disappeared magically!

Fast forward 3 weeks later ...
I'm tapering off Prednisone and the Sinus Pain in my face is returning and I am starting to feel like crap again. The doctor had asked I get an X-ray of my sinuses And since I never want to leave the house (or more accurately too tired to leave) I haven't gotten the X-ray.

So, what do I do next? My next appointment is not for 3 more months. Do I ask for another appointment with the rheumatologist for another 2 shots of "whatever he gave me last time" or do I go see my primary care doctor and try to explain?

l feel like so much is left unsaid with this illness. I have been diagnosed with this illness for almost 2 years and l still have so many questions! This reminds me of the first time they sent me to the rheumatologist with a positive ANA and he told me not to worry-that I probably would never get Lupus. Then he shook my hand and walked but the door leaving me wondering what the hell he meant by that?!

That was over twelve years ago and I guess I did have something to worry about because I did get Lupus! That was ten years of wondering what the hell was wrong with me and going from one doctor to another looking for answers. I really did think that once l get the diagnosis all questions would be answered but I am far from that!

A night out makes all the difference

Last week I went to work two days out of five. Needless to say, I was quite depressed. I stayed home on Valentine's Day and ruined my husband's chance to show off b y sending me flowers at work; they were delivered at home because I was sick. That beautiful arrangement did brighten my mood and raise my spirits.

The next day, I didn't go to work AGAIN because I was so tired and achy even though I had slept all day the day before, but when my husband came home from work he got me out of bed and told me he was taking me out. OUT. I didn't even Want to get out of bed, forget about bathing and getting ready! He looked so excited so I peeled myself out of bed and got ready not knowing what to expect.

I quickly realized my wonderful husband planned a fabulous night out- even getting a sitter for the entire evening! We went to a fancy restaurant, then a movie, and when I thought the night was over, he took me to a suite filled with roses and champagne! It was something out of a movie-so romantic!

That night, I felt normal; not like the pathetic sick person. I didn't even realize how much I needed to feel like a normal women. I didn't even talk about a single ache or pain or doctor appointment. It was beyond wonderful!

Addicted to all things TV

So I have been missing so much work lately. The pain in my muscles, joints, lupus fog, and anxiety is crippling me. I am not confined to my bed...again. 

I haven't been able to finish reading a novel in almost a year. Now, you have to keep in mind that I love reading and I teach reading and I usually read at the very least, one novel a month. I can't concentrate anymore; not enough to finish reading a novel. 

So, I have totally taken to watching every kind of television show/movie possible. Netflix is my new best friend and the DVR on my dish receiver records two show at one. I am of course going to switch to the Dish Hopper because it records something like 6 shows at once! 

Then there's Get Glue! Love, love it! I don't know why it excites me to earn stickers from watching TV and checking in, but it does. They will actually mail you the stickers and I am definitely going to get some kind of grown up sticker book. This is totally taking me back to when I was a kid and collected scratch and sniff, puffy, googly-eyed, and bedazzled stickers in a Sticker Book. 

If I didn't have TV to watch while resting, I would go insane. I am already depressed and super anxious so I think Teen Mom 2, Grey's Anatomy, Scandal, American Idol, New Girl, Glee, and many others are keeping me from cracking up and being dragged off to the insane asylum? Do they still have those? Oh yeah, there is also American Horror Story: Asylum. :-)

One Terrible Week Behind Me

Okay, so I had a terrible week last week. I hadn't even checked my Facebook in an entire week, that's how bad it was!

Last week started off okay, I went to work on Monday and thought everything was great. I was optimistic, but half way through the day my body started to betray me: I got the chills and then my body started to ache and I became extremely fatigued. So, I decided to skip lunch and take a quick power nap on one of the tables in my classroom. I didn't feel any better. The last two periods of the day, I literally fought off falling asleep at my desk while the kids read. By the time the bell rang at 3:15 p.m. I was running out of school WITH the students.

I went home that afternoon and passed out. The next day, I couldn't get out of bed, so I didn't go to work. Wednesday, I couldn't go to work and to tell the truth, I didn't want to. Aside from the crippling fatigue, I was experiencing terrible anxiety. Thursday-no work again. My husband told me that I was going to get fired and truthfully, I didn't care. That day, they started calling from Central Office asking for me to call Risk Management ASAP, so Friday I reluctantly went to work. That day I felt terrible too because I was sensing a migraine coming on, but I pushed through it. I did call Risk Management and the told me they were going to put me on temporary leave; this means that I have excessive absenses due to illness and it is "for my protection".

Okay, so by the end of the day I had a full on Migraine and it lasted 24 hours. The nightmare didn't end there. My whole family somehow aquired a stomach virus and we were all puking all over the place the entire weekend. Everyone was knocked out and I didn't get out of bed all weekend.

So, now it is Monday again and the sun has come out from behind the storm clouds. I am at work!!! Yay!!! I feel only slightly tired and on a scale from 1-10 my pain is at a 3. That is fantastic! I reached the light at the end of the tunnel. All I could do is pray that this reprieve lasts. Pray for me everyone.

Another Weekend in Bed

I didn't go to work Thursday or Friday. I literally couldn't get out of bed. My poor little ones played around me on the bed and on the floor in my room. My son is 5 and I couldn't get him dressed to get on the school bus to go to school. My daughter is 4 and usually stays with my parents during the day, but since I stayed home, she stayed with me.

They are so good kids! At such a young age they know and understand I don't feel well and act accordingly. At one point I woke up and found them both lying on my bed: one with a tablet and the other playing games on my phone. When they noticed I was awake one of them said, "Oh, mommy, did you get enough rest? Do you feel better?" All the while, my daughter rubbed my back they way I usually do when they don't feel good. This is what it has come to? My little ones taking care of me instead of the other way around?! Then I got up and made them lunch and they were still asking if I was okay to get up and make them food. Can you believe that?! It hurts my heart that I can't be the mom I used to be and should be for them.

So, I stayed in bed for 4 days. My husband was so great this weekend. We had tickets to see the Harlem Globetrotters and took the kids on his own because of course I was too tired to go, and Sunday he took the older boys paint-balling all day.

So today, I came to work and had a good day...not great but good. I felt like a normal human being. It feels good. It's amazing how great it feels to be out of my bed, because although staying in bed getting much needed rest is something that I desperately need, It also makes me feel so isolated and depressed. 

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Okay, so fast forward to today, Wednesday, January 23, at 3:15 a.m. I was fully intending to make this blog post somewhat positive and inspiring; you know, that we could overcome and all that crap, but as soon as I got home from work and picked up the kids, I fell into what seemed like a coma for hours. I felt like a car hit me and I was broken everywhere, so I did not go to work AGAIN! I am back to my prison that is my damn bed. 

So I spent another day in bed. I couldn't sleep all night from pain and anxiety, and then slept all day until 3:30 when my son was dropped off by the bus from school. I have to tell all of you that this Lupus is kicking my ass! I am losing myself and I can't dig myself out of this hole. I am depressed and anxious and I don't know what to do. Does anyone know what to do? Any suggestions?

Depression, Anxiety, and Lupus

Okay, so yesterday I didn't go to work, again, on a Monday. In case you didn't know, I teach middle school. Yes, that is enough to make any person not want to go to work, but I have been teaching for 15 years now and have never felt this way before. Sunday night I start to feel nervous, my chest feels tight, and my mind starts racing so much I get very little sleep, so I end up not going to work on Monday. I am starting to notice it has been getting progressively worse. The thought of going to work makes me sick.

At the beginning of the year, I had a particularly difficult class and I started to have all the symptoms of a heart attack and I even had my husband take me to the emergency room just to hear I was having a panic attack. You have to understand that this is just not me! I am a stable person and all of a sudden I have anxiety?!

So, the very next time I visited the rheumatologist, I spoke to her about my symptoms and I was prescribed Xanax and told to take it only when needed. The problem is I feel this way every single day I have to go to work. Now, isn't it bad enough that I have Lupus with all it's complications, Sjogren's Syndrome, Hypothyroidism, and Fibromyalgia, now I have to contend with mental health issues like anxiety?! What a bummer! This anxiety is making me depressed! (which I already take medication for by the way!)

So I am at work with my students today and once I get here it is not so bad, but getting here takes hours of talking to myself. I have to mentally drag my butt to work. It sounds strange but it is true. I lie in bed and tell myself, 'you need to get up', 'you are going to get fired,' 'think about the house,' and 'it won't be so bad just get up.'

Am I the only person with Lupus who is literally scared to go to work?!!!

Prednisone: My Frenemy

So, I am on my fourth week of Prednisone. I am down to 5mg a day and I have to say that I feel pretty good. Now, I am always afraid to  say that out loud because it always bites me in the ass later, but aside from some minor aches I feel good. I feel like I can finally breathe: like I could relax.

For a while there I was feeling so bad it was depressing. I was barking at everyone and crying for anything. I was feeling hopeless. Even when I went on the Lupus groups that usually make me feel better, I would get annoyed with anyone who tried to sound "positive" about living with Lupus. Living with constant pain was getting the better of me and I couldn't even enjoy the holidays. Thank God for Prednisone!

Now, of course I could already feel my new jeans starting to fit tighter and even though I haven't stepped on a scale, I could feel myself getting fatter. But, I could honestly say that's okay. I am okay with it. As long as I have even a day or two without extreme pain, I will deal with my fat arms and big belly. Maybe I could finally start going out walking again...one can only hope!

A Lupie's New Year's Resolutions

It is that time of the year. The time to think of all the ways the ways we can change-improve. One thing I know is that as a Lupus patient I need all the help I can get and this year I intend on making positive changes not just out of vanity but for my own health and my family's well being.

1. Delegate: This year I intend on delegating some of my many chores and responsibilities to my very capable husband and kids. I have always taken on too many things on my own then I am running around screaming like a crazy person when no one helps! I started already: I made my husband in charge of hanging up both his and my son's clothes. Done! One less thing for me to do and one less thing to worry about. 

2. Set up a Support System: I have started this already by joining two wonderful Lupus support groups online, but I need to expand this support system to people in my community. I want to start a Lupus Support Group in my area. The closest one is half an hour away and I never go. We need to help each other in ways our families can't-through complete understanding. 

3. Be Active: Okay so I have gained over twenty pounds this past year and I am not going to stress about it anymore. I have tried to start exercise programs to lose weight but as anyone with Lupus knows, sometimes it doesn't matter how much you want to go out and exercise if your body refuses to cooperate. So, I am going to just be active every day in some way: either walking around the block or doing some yoga poses-something each day even if it is for just 10 minutes. Both walking and yoga will help with the stress also, so it's a win-win!

4. Be My Own Advocate: Ever since I was diagnosed with Lupus it has been like my family secret that everyone knows but no one wants to discuss. Most people know nothing about it: either they think I am dying or they feel like it's no big deal. So, this year I plan on working on spreading Lupus Awareness with my friends and family. I want to participate in a Lupus walk. I want to voice my concerns with my doctor instead of just going along with what he says because I am tired of feeling terrible all the time, so I am going to take the wheel and help myself. 

5. Be Happy!: Okay so that seems so stupid to say that I am going to work on being happy, but with all the things that  could go wrong with this illness I need to focus on what is important: me and my family. From now on, I am not going to care what anyone else wants or expects from me. I am only going to do things that make me happy. This is not out of selfishness; you wouldn't believe how stressed I get over letting down people at work or making others happy instead of focusing on what is really important to me. So I am done with stressing and living MY life.