Let's Talk About Weight Gain

Firstly, I haven't blogged for years for many reasons but the top two are: one, I lost my ability to focus and think and two, I got tired of complaining and feeling like no one cared. But, lately I have been thinking I really need to continue blogging if only for awareness. I still run into ER doctors who truly do not understand lupus at all. 

I want to talk about lupus and weight gain mostly because I have gained so much weight since I was diagnosed. I went to dinner last night and looked in the mirror and freaked out. I look awful! 

I typically spend most of my time at home and in bed and if I go out once a week it is a lot so I typically never really look in a full length mirror. I've been in a kind of depression the past couple of years. I can no longer work as a teacher. When I try to exercise, I feel awful for days. So, I send my kids to school in the morning and call it a victory. Then I go to bed and go back to sleep. I bingewatch shows. I read sometimes...not enough because again I can no longer focus. So, that has been my life. 

When I saw my my reflection yesterday it shocked me in to action. I went walking after dinner for 30 minutes last night and tonight. That seems like nothing, but to me it is big! But, I know what is coming tomorrow or the day after...a flare that will bring me to my knees but this time I am going to push through. I must. I am obese when I never have been. Most people with lupus die of heart disease and I am now 47 and have cholesterol.  It has become a life and death decision.  I must stay with it not just because I am overweight but perhaps it will keep the myriad of symptoms at bay. Maybe it will help my depression. Maybe I will be able to teach again. It is a lot of maybe's...God help me.

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

Exceeding Expectations

Today I dropped off my son at school, I went to my daughter's school to order a shirt, I went to therapy,  I dropped off something for my husband at work, I picked up a form from my oldest son's school and I dropped off a prescription.

I was feeling pretty proud of all I accomplished until I spoke to my mother. She started asking me if I had done A, B or C. I was so angry at her! I yelled at her, "Mom, I could barely get out of bed most days...I do what I can!" "But the kids need your attention...."

I just hung up on her. Holy hell people can be so damn insensitive! What sucks is that she is the MOST supportive person in my family...including my own husband.

http://lupus-exposed.tumblr.com/post/127733181669/today-i-dropped-off-my-son-at-school-i-went-to-my

No job yet

I have applied to so many teaching jobs and even instructional aid jobs but I have only gotten two calls. Two calls...two interviews...but NO JOB. I have been teaching for 17 years-15 of which I spent at the same campus, but after taking a few months off on sick leave, I can no longer get a job even as an assistant.

Boy do I feel inept and useless. It is as if all my qualifications and experience were erased by lupus, fibromyalgia,  sjogren's syndrome, or hypothyroidism. I was so excited to start at another school where no one knew I was sick- where no one looked at me like spoiled goods.

Oh well, if it is one thing chronic illness has taught me is to look on the bright side; I will work as a substitute teacher and God willing someone will see my worth and hire me.

The migraine is back!

Lupus and fibromyalgia cause migraines. I am beginning to feel one starting and I already know it will wake me up at 2 am. I just hope this one doesn't send me to the ER and that it doesn't last too many days. I think I need to start seeing a pain management specialist ASAP or maybe even a neurologist. The ladt thing I need is more doctors. I can barely get out of bed to go to the appointments I have now.

I need to rest after a nap!

Enough said.

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!

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! 

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!

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

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!