A day in the life of a lupus sufferer

In an attempt to get back to blogging primarily about how lupus affects my day to day life, I decided to share what a weekday looks like for me.

Wake up #1- 7:00 A.M: Mom wakes me up to go with her to get breakfast at QuikTrip. It’s my one guilty pleasure of the day and sometimes, it’s the only food I’m able to keep down all day. I get a maple bar and a 16 oz. Diet Coke. Due to my sleeping pill, I’m only about halfway conscious but am somehow able to hold a conversation with mom.

Get home-7:15 A.M: I walk up the stairs slowly since my knees have been bothering me a lot. I realize that I’m going to need to use a sports bandage on my left knee and wonder if the osteoarthritis is in this knee as well. I make a mental note to mention this to my rheumatologist next time I see him and to ask my primary doctor about getting back on the only arthritis medicine that works for me- Diclofenac Potassium. Once I get in bed, I open my laptop and watch an episode of House M.D. while I eat my breakfast.

Going back to sleep-8:30 A.M: Because of my sleeping pill and fatigue, I can’t stay awake during the mornings. I’ve tried many, many times but I just can’t do it.

Wake up #2- 12:30 P.M: This is when my day really begins. I’ll spend a few minutes getting out of sleep paralysis (a side effect of my sleeping pill) and then I’ll check various social media sites and the news. This is when I usually text my boyfriend good morning, and he likes to point out how long I sleep.

Lunch-1:00 P.M: Most weekdays, I’ll eat a bag of popcorn for lunch. If we have leftovers, I’ll eat those instead but since yesterday’s dinner was quesadillas, we didn’t. I really love the Act II Buttery Kettle Corn. Unfortunately, it’s only available in 3 packs so I usually have to buy two boxes at a time. While my popcorn is popping, I decided to be nice and unload the dishwasher and pick up around the house a bit. Once my popcorn is done, I grab a bottle of water and head upstairs. Once I’m upstairs, I realize I forgot my popcorn in the microwave and hobble down the stairs once more. When I’m finally back in bed with my lunch, I watch more House M.D.

Skype-2:00 P.M: Since I have a show on tonight, my boyfriend and I decide to Skype a little earlier than usual. He can tell I’m tired and not feeling my best. I begrudgingly admit that yes, I am in quite a bit of pain. He recommends me getting an ice pack, but I inform him that if I did that, I’d be putting myself at even more risk for damaging my neck and upper back by constantly exposing it to this kind of cold. He asks if I need a nap and I admit that I might, so we get off Skype. I go downstairs and take two Ultram and a 0.5 mg Xanax. The Ultram doesn’t really help with the pain but the Xanax is enough to lull me into a restful sleep.

Wake up #3-5:45 P.M: I wake up and am shocked at how long I slept. I realize my mother is getting off work in about 15 minutes and that I would like to Skype with my boyfriend some more, so we Skype until my mom pulls up.

Dinner-7:00 P.M: Mom makes Home style Macaroni and Cheese for dinner and we watch I Didn’t Know I Was Pregnant. The cats try to steal our food but luckily, I think we’ve about got them trained not to. They’re thrilled when they get to clean our plates for us, though. We have leftovers, so I’ll be able to eat them for lunch tomorrow.

Time with Mom-8:00 P.M: Mom and I go upstairs and watch Criminal Minds in her room. We let our oldest cat, Syphilis (yes, that’s his name.), in with us but not the other cat, since he likes to try to knock things over.

Relaxation time-9:00 P.M: At 9:00, I’m pretty tired but decide to wait until 11:00 or so to take my medicine. I watch another episode of House and decide to do some studying for my G.E.D. test. I buy the Math practice test from the testing company and score 160, which is likely to pass. However, it’s just barely in that range and so I decide to wait until I’ve studied a bit more to schedule the test. I still have the Science practice test to do, but once I’ve done it and I decide I’m ready to take the Math test, I’ll schedule them. I will have my G.E.D. before I go to Vermont in June.

Medications-11:00 P.M: I take my medicine and drink another bottle of water. I feed the cats and give them fresh water, too. Since I have to eat with my medications, I get a granola bar from the cabinet and carry that upstairs with me. I also take my ice pack upstairs.

This is the end of my day, as I go to bed at different times each night.

This is a day in the life of a lupus sufferer. I may seem lazy, but I would give anything to have been able to be more productive today. I wish I had been in college today. I wish I had worked an 8 hour shift at work today. Someday, I’ll be able to do that, but right now, all I can do is my best.

What have I been up to?

I’m going to divide this post up a bit to keep it from being a few super long paragraphs. Hopefully, I can do more updates in this format and it’ll be easier to write and to read.

Wisdom teeth: Turns out, I don’t have bottom wisdom teeth. I have them on the top, but not the bottom. The dentist thinks the pain may have been caused by my lupus, which isn’t surprising.

Health: I saw my rheumatologist this week and he confirmed that we are doing well at this point and I currently have no need for any biologics or chemotherapy medications. This is great news! However, I have been struggling with increasing fatigue. A couple of weeks ago, I posted about my new sleeping pill. It’s definitely helping and I love it! It makes it where I sleep till noon, but I’m able to do that, so it’s fine. My problem is a few hours after I wake up, I get exhausted. I’m wondering if I’m B12 deficient. My grandmother was B12 deficient, and since my mom is a nurse, she was able to do her injections once a month. I’ll talk to my General Practitioner about this when I see him next. One a different note, I’ve been having increased GI symptoms. Sometimes, I just can’t tolerate a meal or food. Sometimes, I’ll have good days and can tolerate everything I eat, but sometimes I can’t tolerate anything other than breakfast (which is always a familiar food).

Netflix/TV: I’m still recovering from Derek Shepherd’s death on Grey’s Anatomy. Mom and I cried and she ended up making we watch The Fresh Prince of Bel-Air with her before I went to bed so that I’d quit crying. I’ll keep watching Grey’s no matter what. It’s my show and I love it. On Netflix, I recently watched a documentary (my favorite kind of movie!) called Love Me. It’s about mail order brides. It was very interesting and I liked that they showed a successful marriage and a few unsuccessful relationships. I really enjoy documentaries that discuss people’s lifestyles or practices. One of my favorite documentaries on Netflix is Jesus Camp. As a Christian, it appalled me. It showed me a whole other side to Christianity. As always, I’m still watching House. It’s one of the best series ever created.

Food: I’m trying to eat a little healthier these days, so I swapped out my nightly ice cream sandwich for Quaker Oats Chewy Oatmeal Raisin Granola bars. These run about $2.50 for a box of 12 and they’re only 90 calories as opposed to the 150 in an ice cream sandwich. I also bought a package of three pork chops. They were cheaper than a pound of the leanest ground beef, which is what we normally buy. They were pretty good, but mom forgot to trim the fat before me made them! Next time, though, I think we’re going to either grill or bake them. This week, I’m hoping to buy some pineapple to snack on and some frozen blueberries to put in my waffles. If I’m lucky, I might be able to talk mom into buying some chicken breasts as well. In the last five years or so, I’ve effectively cut out all fast food and regular soda. I still drink 16 ounces of diet Coke a day, but at least it doesn’t have calories. As I’ve said before, I don’t believe diet Coke will kill me. Sorry.

Wisdom teeth and big mistakes

Today I made a huge mistake. I was able to fix it, but it was still pretty bad.

My mom had to leave work at noon today because she’s lost her voice. She got home and we decided to leave and go to a neighboring town to pick up medicine (I fill the majority of my medications at a small, family owned pharmacy in my hometown. They are a compounding pharmacy so I’m always able to get Phenergan Gel and Phenergan with Codeine filled there.). I went in alone since mom couldn’t talk. I grabbed the FSA card from mom’s wallet and went in. I got my medicine, scanned the card, and walked out. I got back to the car and while putting the card away, I noticed that I didn’t grab the FSA card like I thought I did. I had accidentally picked up mom’s purchase card from her work. I freaked out and was so scared. Mom told me not to worry about it and we went back in and the lovely receptionist was able to void the transaction and we were able to put it on the correct card. Crisis avoided.

I have a wisdom tooth growing in! It’s super painful and my jaw is swollen. It hasn’t quite erupted yet but it’s going to soon because there’s a space on my gums where it’s bled some and looks like something’s coming through. Since it’s hurting, I have to go see the dentist.

I’ll be honest, I haven’t been to the dentist in awhile.

I went when I was younger and always had great check ups. In fact, I’ve never had a cavity. The only thing I ever had done was a maxillary labial frenectomy. The labial frenulum attaches to the center of the upper lip and between the two front teeth. If this causes a gap between the teeth, it’s removed.

Due to extenuating circumstances, I haven’t seen a dentist in about ten or so years. I’ve never really had trouble with my teeth. I never needed braces and didn’t have pain. But now, I have a wisdom tooth coming in and I think I may have a cavity. I’m spots near the gum line that are dark and I’m so terrified that I have a cavity. I know most people have cavities but I never have. I guess it’s just the fear of the unknown that’s getting me.

Sadly, the dentist I used to see doesn’t take my current insurance. This is another thing that causes me great anxiety since this means a new dentist. Luckily, HealthGrades is a great online resource and I think that I’ve found the dentist I’ll be seeing.

49 days until Vermont! I can’t believe how close I am to seeing the man I love!

Skin writing and vacations

I’m breaking my own rules and self diagnosing myself tonight. This is something that is so insignificant that I wouldn’t bring it up to the doctor and don’t need to be treated for, but it’s super interesting.

Dermatographia (which spell check wants to change to cinematographic) is a condition also known as skin writing. It’s characterized by light scratches (or even just pressure, in some cases) that turn into red welts. Most people don’t seek treatment for this since it causes no long term damage. This is why I’m self diagnosing tonight.

Monday night, I had an itch on my stomach. I scratched it and forgot about it. As I was applying my lotion fifteen minutes later, I noticed that I had bright red marks on my skin. They felt like stretch marks (which I have plenty of) but went in the wrong direction. To see if it was scratching that caused this, I lightly scratched my thigh and beside my collarbone. In both places, I developed red marks. Last night, though, I was in bad lighting and didn’t feel my skin, so I missed the fact that they were welts. Tonight, I definitely noticed it.

This is a really cool condition, actually. This anomaly of the skin can be so beautiful, too. If you look up dermatographia, you can find pictures that show this condition can cause the skin to become a canvas.

On a different note, I finally booked my plane tickets for Vermont! I’ve mentioned before that I’m in a long distance relationship and my boyfriend lives 1,600 miles away from me. We started dating on April 27th, 2014 and on September 11th, 2014, we finally met. I spent a week with him in Vermont and we were able to grow so much closer and our relationship was made stronger. On February 17th, 2015, he came here. We hadn’t seen each other in five months and it was so, so wonderful to be with him again. On June 9th, 2015, I will once again step off of a plane in Vermont. I can’t wait.

If you had asked me two years ago, I wouldn’t have ever, in a million years, been able to guess that I’d be where I am now. April of 2013 was right in the middle of a bad time for me. I would have told you then that I was happy. I believed I was, too. However, when I look back on that time, I can see how insecure I was. I was scared. My future was shaky. Now, it’s not. I’m secure in my relationship. I’m not scared. My future is solid. My heart is safe.

The future is scary for anyone. It’s terrifying for people with anxiety. Yet, I realize now that I never had anything to fear. Everything will work out.

This is a short post but I’d like to end it with one of my favorite Bible verses. It’s comforting to me and I hope it will be to you, too.

And we know that all things work together for good to them that love God, to them that are called according to his purpose. -Romans 8:28 KJV

New medications!

Within the last couple of weeks, I’ve been prescribed three new medications. The first was prescribed by my rheumatologist. He prescribed Sulfasalazine to help treat my neck pain, and arthritis. This is an older medication and is contraindicated in lupus patients.

It was no surprise to me that I was allergic to it.

I’m really confused as to why this was prescribed to me in the first place. Any Sulfa containing medications increase sunlight sensitivity and lower blood count. Since lupus causes sunlight sensitivity to the point that it can cause a flare, an increased sunlight sensitivity could be very, very bad. Having lupus also predisposes you to being anemic, so a lower blood count can cause excess bruising and bleeding. There is some evidence that lupus patients are more commonly allergic to sulfa medications as well.

The most commonly prescribed sulfa medication is Bactrim. This is an antibiotic that most commonly treats urinary tract infections. I’ve been prescribed this dozens of times but haven’t been prescribed it since my diagnosis. Instead of Bactrim, I’ve found that Cipro (ciprofloxacin) is a great medication for UTI’s. If you suffer from chronic UTI’s like I do, you also may consider asking your doctor about prescribing you a new medication called UTA. It is wonderful for the pain and urgency! My doctor gave me samples of this medication the last time I had a UTI, and I’m in love with it! It will, however, turn your urine blue. I don’t mean just kind of blue, I mean blueberry blue. It’s wild.

Unfortunately, my allergic reaction wasn’t a rash or anything like that. I had a full blown asthma attack. I haven’t had an attack in years! I have been asthmatic since I was six years old. I have exercise induced asthma, so I’m cautioned against any strenuous workouts such as running or jogging. I’m also sensitive to grass fire smoke.

I’ve ceased taking Sulfasalazine since the attack, obviously.

The other two medications were prescribed to me by my primary doctor. He’s literally the smartest, kindest doctor I’ve known and he genuinely cares about me and my health. I went to see him because of my neck pain (MRI was clean, so my rheumatologist didn’t prescribe anything). I told him how the pain has been lasting all day and that it was so bad I couldn’t sleep at night. He prescribed Baclofen for the pain and prescribed me a new sleeping pill called Belsomra.

Baclofen generally treats spasticity, especially in cases where the patient has cerebral palsy or multiple sclerosis. I had never considered that my neck pain could be a spasticity issue, but the Baclofen has brought my pain from an 8 to a 2. It’s amazing and doesn’t cause me to experience a high, which is great. I take it twice a day and I’m so thrilled with how well it’s working.

This new sleeping pill is everything I didn’t know I needed. I’ve been taking 10mg of Ambien every night for my insomnia. 10 mg is the maximum dosage, so increasing the dosage wasn’t an option for me. Belsomra (suvorexant) is so perfect for me, but not for everyone. It’s very powerful. I, however, don’t work and don’t drive, so daytime drowsiness isn’t dangerous for me. I’ve noticed that if I lay in bed after I wake up (which happens around 11:00 AM), I’ll fall back asleep. If I get up and do something, I’ll be okay after a half hour or so. This drug was only just approved by the FDA in February of 2015, so it’s not too popular yet. My only major side effects (aside from drowsiness and a feeling of inebriation) are minor muscle aches in my legs and vivid dreams.

I really appreciate you all. Knowing that someone is out there reading what I wrote and actually caring means the world to me. Thank you, so much.

P.S. I’m on Instagram! I document my day to day struggles and post a lot of pictures of my cats. You can find me at @hannahhateseveryone.

Five years ago, I hated everything about myself.

this girl was only thirteen years old and was suicidal.
this girl was only fourteen years old and was being relentlessly bullied online.

This was me in May of 2010. I had just gotten a digital camera and I couldn’t stop taking pictures. A lot of things have changed since this picture was taken. My hair isn’t blonde anymore. I don’t have that shirt. Those sunglasses have long been broken. The most important thing that has changed is that girl’s self esteem. At the time this picture was taken, I hated myself. I hated everything I was. I thought I was better off dead, but I didn’t have the guts to end my life. I’m glad I didn’t.

Something I don’t talk about too often is the time in my life when I was being bullied relentlessly online. Back when Myspace was a thing, when Formspring was new, I was being torn down over and over again.

I cannot get into specifics about this situation, primarily because I’d rather not deal with the consequences of this person seeing this and getting mad. It wouldn’t do anyone any good. However, I can say that if that were to happen, I could handle it a lot better now than I could then.

My life was turned upside in 2009 and I couldn’t cope. I was terrified of where my life was headed and what my future held. I don’t know I got through that first year, honestly. I may have been in shock over everything. I don’t remember much of it. One thing does color my memories from that time, though.

I was thirteen. I had a crush on a boy. Wait, let me rephrase that. I had a crush on just about every boy I saw. It wasn’t a huge thing. I was thirteen had never been kissed. I’m pretty sure I still thought kissing was gross. But yes, I had an innocent, childhood crush on a boy. Since I was so young and naive, I’m assuming it was obvious it everyone. It had to have been. This boy, though? He was about 10 years older than me so I knew he would never like me back because that would be very, very weird (It’s kind of funny to say this because my wonderful boyfriend of about a year is 10 years older than me!) I was a kid. I was so, so young. But someone saw me as a threat for some unknown reason and turned my life into a living hell.

At first it was just a comment here and there about how I missed too much school. She didn’t know I had severe anxiety and physically couldn’t go to school. There were a few remarks here and there that she’d make, but sometimes, she’d be nice and I would do my best to forget about her being mean because even though she was mean, I just wanted to be her friend. She was in her 20’s and I thought she was really cool. I wanted to be her friend.

The bullying later escalated and extended to Myspace and Formspring. I don’t want to get into what was said exactly, but for a long time, I would stay up at night and re-read what she’d said to me. It was one of those nights that I decided to wake my mom up at 2:00 AM. I told her that I needed her to call a therapist the next morning because I was feeling suicidal.

I had thought about hanging myself on the back of my door. Everyone’s problems would be solved. Selfishly, I wanted her to realize what the words she typed did to me.

The bullying eventually ceased when I was around sixteen. I was dating a lot and I haven’t seen her in a very long time. I haven’t seen the boy in just as long. They’re married and living their own life and I’m happy for them. I’m a lot older now, and so are they. I’m at the threshold of a beautiful time in my life. I’m working on my GED, I’m in love, and within the next five years or so, I’d like to be married and trying to have kids (hint, hint, babe.). I have a lovely future to look forward to.

If I could have told my thirteen year old self that at nineteen, I’d be ridiculously happy, in love, and going somewhere, I don’t think I would have gotten so depressed. I genuinely believe that all the bullying set the wheels in motion for my breakdown at eighteen, for which I spent six days in the psychiatric hospital.

If I could say one thing to the girl who bullied me, I would tell her that I forgive her. I would tell her that I’m happy for her. I would tell her that I wish her nothing but the best in life. I would make it known that I’m not bitter anymore. I was bitter for a very long time, but not now. It’s not worth being bitter.

This girl is nineteen years old and she loves her life, finally, for the first time.
This girl is nineteen years old and she loves her life, finally, for the first time.

Lupus and Marijuana

Please note that this is my opinion. An opinion is neither wrong or right and we are all entitled to them. My opinion has been formed from research and medical knowledge.

We were all taught in school that weed is a “gateway drug”. What this means is that weed is generally the first drug an addict uses. The use of it can “open the gate” to the usage of other drugs. This is not the case for all people. I could argue that alcohol and cigarettes should be considered gateway drugs as well.

My personal feelings about marijuana do not come from a first hand experience. I have never used marijuana. In fact, I would say that marijuana would be the last drug I would consider using. I’m more inclined to shoot up heroin (not that I ever would) because I don’t like the thought of smoking anything. I also don’t like brownies.

My opinion is also shaped by the fact that marijuana is illegal in my state. I live in Oklahoma and we have not legalized the use of marijuana and I don’t think we will for awhile, if at all. I try not to make a habit of breaking the law and I don’t think that other people should either.

Cancer is where I could make an exception and would consider using marijuana. I’m aware of the benefits of it in this case. Marijuana can decrease nausea and increase appetite and those are huge bonuses for people dying of cancer.

The question posed today though, is whether or not lupus patients (and patients suffering from chronic pain) should be given the option of using medical marijuana to treat their pain.

It’s very hard to find unbiased information on this subject. There’s been very little research done on the use of marijuana to treat chronic pain conditions. Marijuana is classed as a Schedule I in the United States. It would need to be re-classed as a Schedule II for research to be done legally. I support this action, especially since the American Medical Association supports it.

Until further research is done legally, I can’t say that I support using medical marijuana to treat chronic pain. There are oral medications made from cannabis available, and if that’s an option you and your doctor decide you should try, I support that.

What I don’t support is people smoking marijuana and claiming it is for medicinal purposes. In places where medical marijuana is legal, they specifically instruct consumers not to smoke it. We already know that smoking is deadly, so how could a smokable product be medicine?

Even if marijuana was proven to be an effective treatment for lupus or chronic pain, I wouldn’t use it. As a person of science (I’m sure everyone is tired of me saying this), I prefer to trust a pill or medication made in a laboratory or mixed in a pharmacy rather than something that grows from the ground. It may sound weird, since everyone is on a natural kick these days, but I don’t see the need for anything more natural than medications that have been proven effective.

Keep in mind, this is the same reason I refute the claims of essential oils, herbs, acupuncture, and clean eating as medicine. I’m a believer in science. I don’t think “big pharma” is real. I trust my doctor. I trust my pharmacist. I don’t trust a guy who grows something illegal to get high.