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

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. 

Pain, Pain, and more Pain

I am in pain; so much pain. I googled pain and this is the image that came up that pretty much summed it all up. My head is throbbing, my shoulders and neck in spasms, my hips are inflamed, my back is shooting bolts of lightning up my spine and down my leg as well as the pinching in my butt, and last but not least, my knees aching so much I could barely stand. I know I am getting old, I am forty, but I feel like an 80 year old woman.

This week, I tried to explain to my boss how this disease- no it should be THESE diseases- affect my ability to go to work. He looked at me and TOLD me he understood but then immediately after stated it was important I attended extended day planning every Wednesday. For those of you who don't teach, this is like after school tutoring for teachers. We are herded into a classroom while they watch us do our homework. Anyway, I was sitting in his office telling him how my body was not able to tolerate being at work longer than the regular work day-that I needed to go home immediately after the end of the school day so I could rest and be able to return to work the next day, but after my whole song and dance he still asked for me to stay after work not only for extended day but for duty.

It is frustrating! These past two years I have figured out that every time I stay at work past 4 or insisted on doing something after work, I have been unable to get out of bed the next day. This school year, I have already been out 1 and a 1/2 days. One day was the day after "Meet the Teacher Night" and the 1/2 day was after my Thursday duty where I come in early and leave late. It is really so stressful for me because I pride myself in being a good teacher, but when I can't get out of bed, I can't get out of bed. 

Oh well, I think I am just going to be a bad teacher and not show up for duty and leave right after school ends because in the long run, my health and the time I spend with my students is the most important thing. To hell with the extended day planning!

Phantom Pains

I am struggling. I am struggling with my weight.  I am struggling with pain. I am struggling with getting out of bed. I am struggling pretty much alone because even the people who care FOR you get tired of caring ABOUT you.

Jeez it seems that in this day and age there would be a cure for the myriad of illnesses that are holding me hostage but no I am forced to take medicines that fix one thing and cause another but it is only an illusion because I am NEVER really better. I have pain somewhere all the damn time and I swear it is lonely.  No one around me gets it and it really makes me feel so much worse.

I read many blogs of people who struggle with lupus and fibromyalgia and Sjogrens syndrome and arthritis and scleroderma and hypothyroidism and manage to have a positive attitude and outlook but I don't know why I can't. Do other people have great doctors and friends?  I keep going to doctors and they are nice and well meaning but they don't ever have answers...just more doctors and more pills or injections. It is pretty damn hard to feel positive when something is constantly attacking my body from the inside-a phantom menace inside just destroying my hips one day then stabbing the top of my foot the next or shooting fire up my spine or down my leg. So I am struggling with all of this all by myself while my family and the few friends I have left just look at me with pity and go on with their normal lives. I seriously don't know how all of you do it.

My New Normal

As a teacher, I am lucky to have many holidays off that most people do not get. I am off for at least two weeks during Christmas time, four to five days during Thanksgiving, and of course one whole week during Spring Break. Now, that was great for me as a mom, but not as a person. Either I was babysitting other people's children at work, or mine at home. That is no kind of vacation!

So, I often relied on my ten sick days a year. Before I got sick, these were used for two reasons: kids sick day or my favorite, what I called a stress day. On stress days, I would call in sick and send my kids off to school and do things like go to the mall to shop when it was empty or see a movie when it was empty and pretty much decompress. I often wondered what it would be like if I could do that any or every day.

The past few years, things changed. My ten sick days were used because I WAS SICK and it went from ten or eleven days to over twenty! It got so bad, in January I was forced to take a temporary sick leave. I was hoping that if I stayed home and got away from all the stress at work I would feel better. Think again.

Nowadays, I spend the day in bed. I wake up and send my kids to school. (Disclaimer: I have actually stayed asleep after a long sleepless night and not sent my kids to school a couple of days) Immediately after, I go back to sleep. My two little ones stay with me and my mom comes over to make sure they are taken care of and fed. She also makes sure to wake me up so I could eat. She cleans and washes clothes for me and pretty much waits until my husband gets home from work. Somewhere in between I home school my two little ones from my bed of course. 

Things sure have changed for me and for my kids. Today my daughter was angry because Netflix on our television wasn't working right and I didn't get up right away to fix it. "I wish I didn't have a sick mom that always has to stay in bed!" It truly stabbed me right in the heart-the emotional pain was much worse than the costochondritis pain I already feel in my chest. This disease is ravaging my body but it also affects my poor children. I wish I was the normal mom I once was...the mom who could do it all, but this is my reality-my new normal.

I Fell Off the Face of the Earth

I hadn't written in my blog because I lost my job. It really shouldn't have been so devastating, but when a person is a teacher it becomes a big part of his/her identity. I was invested in my school and my kids (students). I had worked at the same middle school for 13 years.

To make a long, long story short, the principal tricked me into taking a medical leave and promised me I would have my position when I returned and it was a big lie. He involved my friends and coworkers and it was ugly.My own friends had gone to show my boss posts I had made on Facebook insinuating I wasn't really sick. I felt betrayed by my so-called friends/coworkers and my administrators, because I am a great teacher even with my illness. My students were outperforming the other students in the grade level but because I had missed some days and I have lupus, they felt they needed to find another teacher to replace me. Now, I still work for the district, but when I return I have no idea what school or city I will be working in. My district encompasses three cities.

This happened the day I returned from Christmas break and I haven't returned to work since. I cried for about a month. I unfriended all my coworkers from Facebook and then refriended some. Finally, three months later, I feel I can write again.

As far as my health, this incident has only made things worse. I am pretty much bed-ridden 24/7. I would say I leave the house 1-2 times a week at best. My mom comes to my house every day and help clean up and feeds me and my little ones. I don't know what I would have done without her these past few months. My body is going into free fall. I am in pain almost every minute of the day and the pain meds are not even touching the pain. I started seeing a new doctor-I drive 6 hours because she is in Houston-and she found I am extremely anemic and am testing positive for scleroderma. Wow, on top of having hypothyroidism, lupus, sjorgren's syndrome, and fibromyalgia, my body is adding scleroderma.

I am not trying to be a downer, but that is life with lupus...at least it is for me!

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!

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.

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!

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.

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!

Is Christmas Over Yet?

I spent all week waiting for Friday. Friday was my last day of work (school) and now that I have reached my goal, I have now been hit with a realization: I am too tired to keep climbing this mountain called Christmas.

Today I couldn't get out of bed all day and Christmas is right around the corner and I have a my daughter's 4th birthday party tomorrow. I mustered up some energy at around 5 pm  and I made it to two stores to buy decorations and goody bag stuff but then I just fell into bed. My son was waiting for me because he wanted to go to the mall to get basketball shoes and an earring. Now, I'm not sure why I agreed to let him have an earring at 15; maybe it's the Lupus clouding my judgement or I was too tired to keep fighting him! Anyway, I had to send my husband instead because I am in bed and can't get up. 

So now what do I do? I sit in bed and think about all the things I need to do tomorrow after I "rest" and it is preventing me from resting! Aaagh! I have this list racing through my head at warp speed:

1. Make goody bags

2. What are the kids going to wear to the party?

3. I have to wash! 

4. What am I going to wear to the party?

5. I have to wash!

6. I need to buy figurines for the cake.

7. I have to finish shopping for Christmas presents.

8. I have to wrap all the presents.

9. Damn, I forgot I need to also buy cookies for the party.

10. Forget washing, stop by the store and buy kids some shirts!

11. Make bow for Cailey's birthday party.

12. What else am I forgetting?!!

I am quite overwhelmed with Christmas this year. I actually feel like lying in bed under the covers and skipping Christmas. Really! It would be wonderful to not have to go anywhere or do anything. Unfortunately that is not possible. There are parties to attend and family to see. I don't think they would understand if I stayed in bed, no, in fact I know they wouldn't. I find I have to keep reminding people that I am not sick temporarily, but chronically sick. Even my own husband sometimes asks me, "What's wrong?" Oh, it drives me crazy! What the hell does he think is wrong?! I have Lupus damn it, everything is wrong!

I love Christmas, really, but just like I was waiting for the day that school let out for Christmas break, I am waiting for Christmas to be over! Maybe I could finally actually REST.

Have a Merry Restful Christmas everyone!

Am I the Pillsbury Dough Boy?

What is is about people that makes them think it is okay to pinch your tummy fat?! I mean, I understood when people felt compelled to rub my belly when I was pregnant, but never in my life have I ever had people pinch or poke me like the Pillsbury Dough Boy until this week. Two work friends very casually and without malice put me through this and it was just humiliating and shocking. I know that this past year after taking Prednisone I have gained 30 pounds but I didn't think it was that bad; bad enough for people to be poking me. Should I have giggled?! I always want to go walking or do yoga but never ever have the damn energy for it. I think I am going to have to save this experience in my mind to give me the extra push to get out there. So I guess I am going to turn this into a positive thing-a motivator to get my fat butt out of bed so people stop poking me! :-)

Okay, so I am nearing my third week of a graduated Prednisone treatment and aside from the obvious weight gain, I am still feeling pretty crappy. My joints ache like crazy and for some reason even my trusty Hydrocodone is not working for me. On the bright side, I am starting to feel a little more energetic today.  I hope that is a sign of things to come. I am so looking forward to a break in this flare that I have been experiencing for over a year. This year my Christmas wish is simple: remission. I dream of it! I don't remember the last time I felt well-a day without pain. When you talk to someone with Lupus and they say it's a good day, what we really mean is that it is tolerable. So today I'm wishing for a day without pain for myself and for everyone else unfortunate enough to suffer from Lupus. 

Let me count the ways...

One of the things I have noticed about living with Lupus, is that on a regular day I experience a myriad of painful symptoms so much so, that I even forget to document and write about it. Not only that, I forget to talk to my doctor about these symptoms. I think what happens is that in my mind I prioritize-what hurts the most? You know?

Yesterday I was writing about this severe pain in my bones/joints and when I was done blogging I thought to myself, damn my stomach hurts so much-I need to throw up again, and I drank a half gallon of Mylanta. When I shared my blog with my favorite Lupus group on Facebook, I added a question about stomach issues. I got so many responses from other women who were experiencing the very same thing I was feeling! When I eat, it feels as if the food just sits in my stomach like a burning ball of food that refuses to digest. If I don't throw up, I can't go to sleep. It feels as if my food just doesn't digest.

Why had I just ignored that symptom? I have been throwing up and feeling pain for over two weeks and I didn't even think about it! On any given day I have stomach pain, joint pain, a sinus infection, a bladder infection, and muscle aches. Can you imagine trying to talk to someone about this?! They think I'm a hypochondriac who has "everything" everyone else has! So, we prioritize, we compartmentalize, we leave out symptoms in order to be believed and taken seriously.

I often read posts that talk about people being very supportive about their illness, but I find that most people in my life, including my own husband, have what I call "Lupus fatigue". They are tired of hearing about all the things that hurt me. I see it in their face. I don't think they even mean to do it: their eyes glaze over or they even roll their eyes and automatically tune out. My own husband is sick and tired of me being sick and tired. I have now stopped talking to most people about the way I feel-even my husband. Sometimes I just sit in bed and cry alone and he will walk in and ask me, "what's wrong?" I feel like screaming, "Damn it! I have Lupus! Everything is wrong!"

I have to thank God for all the women, and some men, on the Lupus support group on Facebook that I am a part of because they are the only people who I can list the many symptoms I have without judgement. They get it. They understand. I think depression would have swallowed me up if not for them.