1. The illness(es) I live with is (are): systemic juvenile arthritis, fibromyalgia, patellofemoral arthralgia, psoriasis, anxiety, depression, post-traumatic stress disorder, food intolerance (dairy & gluten), and suspected Raynaud’s.
2. I was diagnosed with it in the year: 1994, 2012, 2014, 2010, 2011, 2011, 2015, 2012, and not yet respectively.
3. But I had symptoms since: 1993, 1993, 1993, 1995, 1995, 1994, unsure, unsure, 1993
4. The biggest adjustment I’ve had to make is: learning how to deal with the health/insurance/care world very quickly
5. Most people assume: I’m ill because I’m fat – it’s actually the other way around.
6. The hardest part about mornings are: actually waking up is hard.
7. My favorite medical TV show is: House, as always.
8. A gadget I couldn’t live without is: my iPhone. I used to be an Android person but the iPhone 6 won me over.
9. The hardest part about nights are: getting to sleep.
10. Each day I take 12 pills & vitamins. (and one syringe!)
11. Regarding alternative treatments I: am really skeptical. You have to do your research because a lot of alternative treatments have their own interactions, risks, and side effects.
12. If I had to choose between an invisible illness or visible I would choose: invisible. I’ve always felt lucky that my illnesses are mostly invisible because I can get by ‘as normal’ if I want or need to. I can’t imagine how hard it is to handle the more visible issues.
13. Regarding working and career: I enjoy my current job but it will be nice when I can start doing more of my own thing.
14. People would be surprised to know: that I’m sickeningly sweet. I tend to use my blog and twitter account to get out all my frustrations and upsets so that they don’t contribute to me feeling icky.
15. The hardest thing to accept about my new reality has been: probably how uncaring some people are. I am a super hippie and way into compassion, so I’m sure there’s a disconnect there too.
16. Something I never thought I could do with my illness that I did was: run again, and I’m getting there!
17. The commercials about my illness: well there really isn’t one for SJIA. The fibro ones make it seem like it’s all women and we’re all kinda whinny. No thank you!
18. Something I really miss doing since I was diagnosed is: … since I’ve been sick my whole life, there’s not much, but with the gluten intolerance, I would say not having to plan my meals so much… OMG and Olive Garden breadsticks.
19. It was really hard to have to give up: OG breadsticks…
20. A new hobby I have taken up since my diagnosis is: mostly everything! I taught myself to play the ukulele and I’m getting really good at singing.
21. If I could have one day of feeling normal again I would: get a bunch of things done around the house – and do!
22. My illness has taught me: that even in the worst situations you can find blessings. I hate being sick and I hate that many people I know are sick – but I’m grateful that our illnesses have brought us together.
23. Want to know a secret? One thing people say that gets under my skin is: when they make comments about my rashes. Thank you. I know I look like a cherry popsicle.
24. But I love it when people: ask what they can do to help. Even though I don’t really take people up on it, it’s nice to have people who are willing to make food or some hang out during crummy days.
25. My favorite motto, scripture, quote that gets me through tough times is: Living with Still’s is still living.
26. When someone is diagnosed I’d like to tell them: to learn as much as they can about their illnesses and remember that they are the expert in themselves.
27. Something that has surprised me about living with an illness is: how many awesome people are out there to connect with.
28. The nicest thing someone did for me when I wasn’t feeling well was: to text me and calm me down during a panic attack.
29. I’m involved with Invisible Illness Week because: the vast majority of my issues are invisible!
30. The fact that you read this list makes me feel: happy 🙂
Category: health adventure
Reflections on 21 Years of Illness, Part 1
This coming Friday will mark 21 years of living with this disease for me. It’s not necessarily a day I want to celebrate, but it is also a day that I cannot let go by unmarked. I hope to write a few different blog posts this week reflecting on the live I’ve lived so far, the lessons learned, and the amazing steps that have been made in chronic illness and rheumatology care since 1993. This is part one in that series, about the random things that have happened since I fell ill. For the sake of limiting my political views from coming in here, I’ll stop at 2007, when I began blogging and dating my hubby. Personal events will be bolded.
- 1993
- I fall ill (Nov 14)
- NAFTA agreement (Nov 21)
- Toni Morrison won a Nobel Peace Prize for literature (Nov 30)
- 1994
- Nancy Kerrigan attacked (Jan 13)
- Four convicted in World Trade Center bombing (Mar 4)
- Hutus in Rwanda began their genocide against the Tutsis (Apr 6)
- South Africa held first interracial election and elect Nelson Mandela (Apr 29)
- OJ Simpson arrested in connection with the murders of Nicole Brown and Ron Goldman (June 18)
- I am finally given a real diagnosis that fits (summer)
- MLB players went on strike (Aug 13), which caused owners to end the season and cancel the World Series (Sept 14)
- After a month or so of first grade, I am pulled out and homeschooled (Nov)
- 1995
- My sister Kelsey also falls ill (last year or this year? I can’t remember but she was 2 or 3), presenting the same symptoms as me. She is diagnosed by the family we were raised in and receives no medical treatment. I quickly am relieved of my access to medical care as well as the home we grew up in becomes increasingly abusive. The homeschooling we were both to receive turns into us trying to teach ourselves very quickly as the adults decide it isn’t their problem to teach us.
- MLB strike ended (Apr 2)
- Appeals court upheld a woman’s plea to enter the Citadel military academy (Apr 13)
- Oklahoma City bombing (Apr 19)
- Israelis and Palestinians agree to transfer the West Bank to Palestinian control (Sept 24)
- Ceasefire reached in Bosnia (Oct 5)
- Yitzhak Rabin killed (Nov 4)
- 1996
- FBI arrested suspect in Unabomber case (Apr 3)
- Ella Fitzgerald died (June 15)
- TWA Boeing 747, Flight 800, crashed (July 17)
- Bomb set off at the Summer Olympic Games in Altanta, GA (July 25)
- Madeline Albright becomes first female Secretary of State in the United States (Dec 5)
- 1997
- Hale Bopp comet proximity to Earth (Mar 22) inspired Heaven’s Gate cult group to commit suicide, bodies found (Mar 26)
- US spacecraft began survey of Mars (July 4)
- Princess Diana killed in car crash (Aug 31)
- Mother Teresa died (Sept 5)
- Rituximab (Rituxin) approved by the FDA for use in non-Hodgkin’s Lymphoma (Nov 26). It would later be used for RA and other rheumatic diseases as well.
- 1998
- President Clinton accused in sex scandal (Jan 21)
- FDA approved Viagra (Mar 27)
- Good Friday accord reached in Northern Ireland (Apr 10)
- Infliximab (Remicade) is FDA approved for treatment of Crohn’s disease (Aug 24). It will later be used to treat rheumatic diseases.
- Matthew Shepard beaten to death for sexual orientation in Laramie, Wyoming (Oct 6)
- Enbrel approved by the FDA for use in Rheumatoid Arthritis (Nov)
- My brother Matt was born (Nov 20)
- 1999
- NBA ends labor dispute (Jan 6)
- First nonstop balloon flight around the world completed (Mar 20)
- Joe Dimaggio died (Mar 8)
- NATO began airstrikes on Serbia (Mar 24)
- Dr. Jack Kevorkian convicted of second-degree murder in assisted suicide/death with dignity case (Mar 26)
- Columbine massacre (Apr 20)
- First woman graduates from the Citadel (May 8)
- US women’s soccer team beats China for World Cup win (July 10)
- JFK Jr died (July 16)
- World population reached 6 billion (Oct 11)
- Tobacco companies admit smoking is dangerous (Oct 13)
- Elian Gonzalez debate starts (Nov 25)
- 2000
- Y2K Scare (basically all year longggg)
- Hilary Clinton enters senate race in New York (Feb 6)
- The IRA missed their disarmament deadline, so Britain came back in to rule Northern Ireland (Feb 11)
- Vermont approves same sex unions (Apr 25)
- August Pinochet lost immunity granted by Chile, which leads to a trial for years of torture and abuse while he was dictator (May 24)
- Israeli troops withdraw from Lebanon (May 24)
- Britain leaves Northern Ireland again (June 4)
- Yugoslavia overthrew government and president Milosevic (Oct 5)
- USS Cole explosion (Oct 12)
- 2001
- George W. Bush sworn in as president (Jan 20)
- Bush abandoned Kyoto Protocol (on global warming), pissing off like everybody (Mar 30)
- Former Yugoslavian president Milosevic delivered to The Hague for his war crimes trial (June 29)
- After years of begging, I am allowed to go back to public school (Sept 10 is my first day of 8th grade)
- Terrorist attacks on the United States hit the Pentagon and take down the towers of the World Trade Center, while another plane reportedly headed for the White House crashed into an open field in Pennsylvania after passengers acted to stop the plan (Sept 11)
- My immune system figures out how to get sick quick, and I’m home with the flu for a few days (Sept 12)
- Anthrax letters find their way to several government agencies, killing a dozen people (Oct 5 and on)
- Bombing campaign against Afghanistan began (Oct 7)
- IRA finally began disarming (Oct 29)
- 2002
- The Euro began to be used in European Union countries (Jan 2)
- East Timor becomes a new nation (May 20)
- US Catholic bishops finally institute a zero tolerance policy of child abuse after several high profile cases come to light (June 14)
- I start high school (Sept)
- Vatican calls for softening of the above zero tolerance policy (Oct 18)
- DC sniper attacks (Oct 2-24)
- EPA relaxed Clean Air Act (Nov 22)
- Department of Homeland Security created (Nov 25)
- Humira approved by the FDA for use in RA, JIA, PsA, AS, Crohn’s disease, ulcerative colitis, and plaque psoriasis (Dec 31)
- 2003
- North Korea withdraws from nonproliferation treaty (Jan 10)
- Space shuttle Colombia exploded (Feb 1)
- Tons of demonstrations around the world pleading with US Government to leave Iraq alone (Feb 15) and then everyone in the UN tells the US to not invade Iraq (Feb 24)
- We invade Iraq anyway (Mar 19)
- First Palestinian prime minister sworn in (Apr 29)
- Massachusetts Supreme Court ruled in favor of gay marriage (Nov 18)
- Sadaam Hussein captured (Dec 19)
- 2004
- Enron CFO admits being bad (Jan 13)
- Al-Qaeda terrorist attacks in Spain (Mar 11)
- Abu Gharib scandal photos released (Apr 30)
- Chechen terrorists take over school, killing 340 in total (Sept 1-3)
- Christmas tsunami caused by a 9.3 magnitude earthquake kills an estimated 225,000 (Dec 26)
- 2005
- Mahmoud Abbas wins presidency of the Palestinian Authority (Jan 9)
- Saudi men are allowed to vote in municipal elections (Feb 10)
- Pope John Paul II died (Apr 2)
- Benedict XVI becomes the Pope (Apr 24)
- Mahmoud Ahmadinejad wins Iranian presidential election (June 24)
- Sandra Day O’Connor retires from the US Supreme Court (July 1)
- London hit by terrorist attacks (July 7)
- Central American Free Trade Agreement (CAFTA) signed (Aug 2)
- Hurricane Katrina hits the Gulf Coast killing more than 1000 people and leaving many more homeless (Aug 25-30)
- Angela Merkel becomes Germany’s first female chancellor (Oct 10)
- 2006
- John Boehner is elected House Majority leader and most likely to be orange (Feb 2)
- I graduated from high school with honors and a full International Baccalaureate diploma (June)
- We move to Wisconsin (Aug) and I get my first job at the end of the month and start college with Sophomore standing (Sept)
- My sister Ella was born
- South African parliament votes to legalize same sex marriage (Nov 14)
- Gerald Ford dies at age 93 (Dec 26)
- 2007
- Virginia Tech massacre (Apr 16)
- The transition of Northern Ireland to self-rule takes final steps (May 8)
- After several months of fighting and other issues, Palestinian president Abbas dismantles much of the government and declares a state of emergency (June 14)
- Bush vetoes a bill that would’ve eased restrictions on stem cell research (June 20)
- A bridge in Minnesota collapses while full of cars, killing 13 (Aug 1)
- I start dating Theron (Sept 19 + 20)
In the last seven years, several new treatments for rheumatic diseases have come out from Ilaris to Actemra to Orencia and more. Several of those are FDA approved to treat SJIA specifically. We’ve also discovered that aggressive treatment within the first 6-9 months of diagnosis yields the best chances for remission.
30 Things About My Invisible Illness(es) You May Not Know
It’s Invisible Illness Week!
1. The illnesses I live with are: systemic juvenile idiopathic arthritis (SJIA or Still’s Disease), psoriasis, fibromyalgia, general anxiety disorder, depression, and patellofemoral arthralgia of both knees (yeah, the last couple are newerish)
2. I was diagnosed with it in the year: SJIA – 1994; psoriasis – 2010; fibro – 2012; GAD, depression, and the knee thing – 2014
3. But I had symptoms since: SJIA – Nov 1993; psoriasis & fibro – 1995ish?; GAD, depression, and the knee thing – who even knows, but since I was pretty young.
4. The biggest adjustment I’ve had to make is: having to look at my electronic medical record to remember everything I have!! Nah, but really the biggest thing has been to take care of myself and put other things on the back burner.
5. Most people assume: that my problems are because I’m overweight, but I’m overweight because of my problems!
6. The hardest part about mornings are: waking up. I could hit snooze forever.
7. My favorite medical TV show is: House.
8. A gadget I couldn’t live without is: I used to say my laptop, but now it’s my phone. I have so many apps on there, from anxiety calming apps to snapchat and instagram to tumblr, twitter, and facebook to keep my advocacy up on the go. It also helps me connect with and talk to the most important people in my life, so that’s pretty baller.
9. The hardest part about nights are: the inconsistency in my energy levels. Sometimes I get home from work just half dead and can’t do much. Other days, I can’t sleep because of too much energy. Other times, it’s because of too much pain.
10. Each day I take 10-14 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: embrace those that have scientifically been proven to help my various conditions, but also don’t follow those a lot (read: I need a massage y’all).
12. If I had to choose between an invisible illness or visible I would choose: invisible. The problem with the invisibility issue will not go away if I just had a visible disease, but only is us invisible peeps band together to raise awareness. Also, as frustrating as it is, I am privileged to not constantly be inspiration porn for people.
13. Regarding working and career: I don’t even know what to say. I’m good at my job and I like it, but I don’t love it. There are definitely more advocacy related fields/positions I wish I could go into. It’s just a matter of getting those people to bite.
14. People would be surprised to know: that I grew up in an abusive home. Abuse is actually one of those things that’s been studied and found to increase likelihood of having fibro, so it shouldn’t be that surprising, but I’m nice haha.
15. The hardest thing to accept about my new reality has been: the shifting parameters. Look, I’ve been sick since before I had the chicken pox, so there isn’t so much a new reality… but I’ve learned to do more self care. The frustrating thing with that is that my body’s definition of okay and shitty consistently change, along with my energy and pain levels. I just wish it was more predictable.
16. Something I never thought I could do with my illness that I did was: to be otherwise healthy. I’ve been able to have some great role models lately, and I’m definitely working on it.
17. The commercials about my illness: are total BS. I don’t go golfing. The good news is that pharma is listening to patients say that, and is trying to make changes.
18. Something I really miss doing since I was diagnosed is: coloring all day? Really though, I think one of the toughest things is not being able to go and do what I want without thinking about it.
19. It was really hard to have to give up: running. I was told by my physical therapist earlier this year that I’m not allowed to run for a while. I love the feeling of pushing myself to do more than I could before, and I’m feeling a little bummed about this. However, my knees are getting stronger and we can soon start running rehab.
20. A new hobby I have taken up since my diagnosis is: I’d like to think my music stuff is a good hobby, but I also consider my advocacy work to be a nerdy hobby.
21. If I could have one day of feeling normal again I would: use it for my wedding day, and I did. I’m so glad. If I had another one though? I’d want to go on a long hike or run or go be super active without bringing the cane just in case.
22. My illness has taught me: to fight for what I need.
23. Want to know a secret? One thing people say that gets under my skin is: when they give me advice on what herbs to try or give reiki healing a shot. Y’all, I’ve been sick for 21 years now. I know what works for me and what doesn’t.
24. But I love it when people: do thoughtful things like ask if stairs are okay today when we’re walking or when someone walks slower than the group to match my pace or when I get texts from people to check in on me while I’m flaring.
25. My favorite motto, scripture, quote that gets me through tough times is:
“When we are no longer able to change a situation – just thinking of an inevitable disease such as inoperable cancer – we are challenged to change ourselves. In accepting this challenge to suffer bravely, life has a meaning up to the last moment, and it retains this meaning literally to the end.” -Victor Frankl
26. When someone is diagnosed I’d like to tell them: to do their research. Learn as much as you can as quickly as you can about your illnesses. Doctors aren’t unable to make mistakes, and being an informed patient may just save your life – and it’ll connect you with others.
27. Something that has surprised me about living with an illness is: how much more of a family I have in the chronic illness community than with my large extended batch of relatives. I feel there is less judgment, less frustration and agony over decisions. There’s an understanding there that other people often cannot have.
28. The nicest thing someone did for me when I wasn’t feeling well was: just hold me while I cry and assure me that my feelings are valid – and that everything will work out.
29. I’m involved with Invisible Illness Week because: all my illnesses are invisible to people who don’t know them. We have to raise awareness.
30. The fact that you read this list makes me feel: good. Somethings have changed since the last time I did this, both for the better and for the worse. I think it’s interesting to track those changes.
A Day in the Life
My alarm is set to go off at 5:50, just so I can hit snooze several times. When my alarm goes off again at 6:10ish, I’m generally awake enough for the pain I’m in to really hit me. I do some stretches in my sleepy snooze state to try to loosen up. I’m finally up about 6:30. I hobble to the bathroom and play on my phone to wake up. I take my meds and do some dry shampoo (there’s no way a shower is happening in the morning during winter y’all, and sometimes this doesn’t even make it) before I head back to the bedroom to psych myself up to pick out clothes and get ready for work. I may use my biofreeze if I have particularly bothersome joint (i.e., if I had a saw, that joint would be history). I make some coffee and throw together my food for the day – some protein bars and greek yogurt and usually something else healthy and/or tasty (like some GF bread or pastries, or hummus and chips).
I head out to catch my 7:15 bus around 7:07ish or so – earlier if it’s icy or snowy, because my current apartment complex isn’t maybe the best at clearing any of that. Hooray. Our building is behind two others, and I usually go through one of the others to get to the bus stop so I’m not outside in the elements as long (read: I live in Wisconsin – ’nuff said). Since my bus starts its route at our complex, I’m able to catch one of the front disabled seats. It makes it so much easier for me to get around without having to whip out my cane and feel embarrassed.
Once I get to my stop, I have to walk a couple blocks and a few sets of stairs to make it up the hill and into my office. I’m usually in early, so I spend time with my work BFF before I’m actually scheduled to start. I usually am pretty into slurring my speech in the morning – something that much be a side effect of either having to be here or a medication, but I’m unsure what. I’m pretty tired in the morning and not necessarily here if you know what I mean. I spend most of my time on the computer, balancing our department credit cards and handling travel arrangements and all sorts of other things. When I have lulls in my day, I spend time working on our social media. Throughout the morning, I eat 50-100% of the daily value of protein.
By the time lunch rolls around, I’m pretty tired already. My biggest consolation is that for an hour I get to choose what I do, and at the end of that I have 3.5 hours until I get to go home. I write blog posts, participate in twitter chats, and just generally work on advocacy issues in addition to checking out my own social media (now that I have my wedding 85% planned anyway!!). I’ll make sure to check my calendar so I know I’m not missing any chats or things I’ve promised to be a part of. When it’s nice out, I try to go outside for a little bit of lunch, but with our lovely cold temps lately that’s not been an option really. On campus, they don’t do a great job of taking care of the sidewalks either so hooray for that. Every other Friday, we have faculty/staff meetings at lunch (which I don’t usually eat at) so I eat early or, more often, late. Lately, I’ve tried to cut back on caffeine, but I have to have some by lunch or my migraine/neck/back issues go crazy.
After lunch, I tend to sort the mail and take care of any additional packages that may have been delivered. I also start up my music if I haven’t already. It’s a huge part of what gets me though the day. We have office support staff meetings every other Monday at 2, so I’ll get ready for those when they happen. If I have any travel to arrange, I try to make sure I get it done in the morning as it’s usually less busy. I try to just kind of get random small things taken care of after lunch and save the bigger projects for the morning. Lately, at some point in the day (near lunch) I have to take a muscle relaxer. My neck/back have been huge issues lately and I’m not sure just why as of yet.
By the time 4:15 comes around, I start to put away our credit cards and keys and get ready to close up shop so I can be out of here at 4:30 and head down to the bus stop. There are more buses in the afternoon that can get me home than in the morning, but since my quitting time coincides with most people’s that also means the buses are more full. If I’m lucky (and I usually am) I can snag one of the disabled seats and not be forced to stand or crawl over someone.
By the time I get home, I’m usually fairly tired. T doesn’t get home until about half an hour later, so I’ll use the time to play video games or do Truvio surveys or watch TV or other things. I may eat a protein bar or a bowl of cereal, as I’m often pretty hungry about this time too.
I wish I could say that I was sticking to my running regime to train for my 5k, but lately I just feel so awful I spend most of the night on the couch. Recently I’ve begun to wear a pedometer and realized that I walk an awful lot more than I thought – a half mile by the time I get to my office in the morning alone! My new drug (Cimzia) is great for joint pain but I find my systemic features are more prominent than they were when I was in the grey area of no drugs. Maybe I’m just able to focus on that more as my joint issues are calming down. Who knows. Mentally, though, I’ve been able to handle paying more attention to things and have caught a number of mistakes made when I had high pain (i.e., when my Lyrica was tied up in the prior authorization game and no one was doing their job to move it forward). It’s frustrating to see this affect my job performance as well as other aspects of my life.
I’ve also been working on a number of projects lately that are keeping me pretty busy. I recently served on a JA Youth Panel for my local chapter of the Arthritis Foundation and I’ll soon be in DC for the Advocacy Summit, so I’ve been doing a lot of research and putting a lot of information together for all of these things in addition to planning my wedding. I’m not sure people understand how much effort I put into any of these things – mostly because I tend to not brag – but with the panel I spent basically November to the morning of the panel on February 22nd reading and creating lists and asking other people to share ideas and listing points to hit. I seem to be involved in a lot of these types of things, and while many may regard them as special events, they really are a part of my everyday life. Between my research and spoonie chats (every Wednesday night 9-11 ET on Twitter – use #spooniechat and follow DawnMGibson for info), there is some special thing I’m working on.
I take my bedtime cocktail of pills at 9pm so that I can hopefully be asleep by 11ish. Some nights I fall asleep before I even make it to bed and T has to get me coherent enough to get to our room. Sometimes it’s hard to find a comfortable position, especially with my neck and back issues, so falling asleep takes longer even though I’m ready to go. There are nights, though, where I can’t sleep due to pain but can’t take more pills if I want to work the next day. Being awake with nothing to do but think is very hard on chronically ill people. We think about everything we fail in and about all of our fears. We wonder if our new symptom is a side effect of a med or are we doing something wrong or do we have yet another illness. I personally think about death a lot due to having lost friends to their respective diseases. I worry about the future a lot, and it’s hard to turn that worry off. It’s hard to operate without enough energy/spoons. It’s hard to face these big issues alone – and to be in a state of mind where you seem to face them every day.
The great thing, though, is that I know the chronic illness community gets it. And that makes all the difference.
30 Things About My Invisible Illness You May Not Know, 2013 edition
I’ve done this survey a few times but every time I do it things change. Since I haven’t done it for a while, I thought I’d give it a go. Enjoy!
1. The illness I live with is: Still’s Disease (juvenile onset juvenile idiopathic arthritis), fibromyalgia, hypermobility, asthma, Sjogren’s Syndrome, psoriasis, gluten intolerance, scoliosis, and bouts of uveitis (I had to look this up on the blog because I can’t even remember it all now Jesus)
2. I was diagnosed with it in the year: Still’s – 1994; fibro – 2012; asthma – 1993?; psoriasis – 2010; gluten intolerance – 2011; scoliosis – 2012. The others have been mentioned multiple times so I’m not sure? That’s bad haha.
3. But I had symptoms since: Still’s onset was in 1993, but the others all follow this so in reality I have no clue.
4. The biggest adjustment I’ve had to make is: slowing down. Since I can remember I’ve always done a lot – I did plays in high school and didn’t get anything less than a 4.0 until my junior year. I was one of the valedictorians. At one point in college, I was taking 4 classes and working 3 jobs. Most of my working life I’ve had 2 jobs, but I can’t do that anymore. Resting is terrible for me.
5. Most people assume: I’m fat because I eat twinkies all day and sit on my ass. They don’t know about the 2 years on steroids and the terrible hungers. They don’t know that I work myself to the bone and still barely lose weight no matter what I do. And they almost always assume when I use my parking placard that I’m using my grandma’s illegally. I love the stares I get, I really really do.
6. The hardest part about mornings are: Actually waking up. My night time meds make me incredibly woozy so it is really hard to physically wake up to my alarm clock.
7. My favorite medical TV show is: House, always House.
8. A gadget I couldn’t live without is: my laptop/phone/iPod touch. They are my connections to the outside world so that even when I feel the worst I can still take part in being a part of the world. Plus it’s where most of my friends are 🙂
9. The hardest part about nights are: both getting to sleep and dealing with the Still’s. It is most active at night, so that is when I get my fevers, chills, and rashes the worst. After about 5 pm I look a mess no matter what I do.
10. Each day I take approximately 14 pills and I do a shot once a week.
11. Regarding alternative treatments I: think some of them can work but I trust those that have been scientifically proven because most of the ones that do work only do so for specific illnesses and have little impact on autoimmune arthritis. I do believe massage and changes in diet can help but by no means can these things cure us.
12. If I had to choose between an invisible illness or visible I would choose: I’m down with what I got. There are plenty of days where these things aren’t invisible – people just don’t know how to look.
13. Regarding working and career: I miss having a job that made me feel more important and helpful than my current one – don’t get me wrong I know I help so many people captioning calls for the deaf and hard of hearing, but I don’t usually get admiration save from my supervisor. My volunteering efforts are my real jobs.
14. People would be surprised to know: Just how much pain I am in every single day and the fact that I’m not on narcotics to deal with it would probably blow their minds. Just right now I’m hitting a 4.5 on my pain scale, but I feel like to others this could be 7 or 8 territory.
15. The hardest thing to accept about my new reality has been: losing my independence. It isn’t like I’ve lost that much, but I’m very stubborn and I will do things myself no matter how much it hurts… or at least that’s how I used to be. The fiance had to help me walk to my bed last night – 20 feet I think. He often has to help me take off certain clothes like sports bras because of how my shoulders hurt. I know he loves me and would do whatever I asked, but I’d rather think of him taking off my clothes in a funner way than it happens.
16. Something I never thought I could do with my illness that I did was: I FUCKING RAN. I haven’t run a lot lately but oh my god. I used to run a lot in high school and I lost it to this disease. The day that I decided to run again earlier this year I was almost in tears at the gym over how proud I was. Every time I run and push myself a little further, from running half a mile to three quarters say, I can’t even describe the feeling I get.
17. The commercials about my illness: well, actually, there aren’t any commercials about Still’s because like no one knows it fucking exists except for those of us affected by it and other volunteers/doctors/etc. I will say arthritis commercial piss me the fuck off though. “Hooray, I can run with my puppy because of my shots!” is not the norm. And a certain golfer certainly has got moon face from steroids along with his Enbrel…
18. Something I really miss doing since I was diagnosed is: I’ve been sick since I was 5 so… um… I guess everything? Everything I’ve done really has been post diagnosis and with a good amount of pain and fatigue involved so it is hard to answer this question.
19. It was really hard to have to give up: graduate school and being spontaneous definitely. I’d love to wake up on a Saturday and look at the fiance and say “Hey, let’s go hiking today” but I really can’t. Even when we are able to go, I have to carry certain things with me that make it a pain in the ass. Grrr.
20. A new hobby I have taken up since my diagnosis is: Again, being sick since I was 5, this would include just about everything but singing, dancing, and Disney movies. But clearly I’m enjoying blogging.
21. If I could have one day of feeling normal again I would: choose to save that day for my wedding day. Please please please I need this to happen.
22. My illness has taught me: virtually everything I know about perseverance and fighting. I often wonder what I would be like without this illness and how lame I would be haha.
23. Want to know a secret? One thing people say that gets under my skin is: when people fucking tell me to take a Tylenol or do xyz or take these herbs or just stop taking meds or when my soon-to-be-ex-primary-doctor treats an issue I’m dealing with with less importance because he thinks I’m a hypochondriac or assumes that something doesn’t hurt when I’m used to 8s and 9s on the pain scale and might not realize how that changes things. Fucker.
24. But I love it when people: do something to show me they care. Some of my favorite experiences have been when someone recognizes I’m having a rough day and does something to help it get better, whether it means offering physical help or emotional care.
25. My favorite motto, scripture, quote that gets me through tough times is: “Living with Still’s can still be life.” – Laura Jayne Kenyon
26. When someone is diagnosed I’d like to tell them: learn every single thing you can about your illness. Discuss an elimination diet to see if foods make it worse. Connect with others to form not only a support system but also a group that can analyze new treatments for each other and such.
27. Something that has surprised me about living with an illness is: that no matter how much I hate these fucking diseases I wouldn’t be any other way. All the kids I know with this need someone who can help their parents understand and if I can help just one parent help make their child’s life better then everything I have been through is worth it.
28. The nicest thing someone did for me when I wasn’t feeling well was: I can’t even pick out one thing. I can say for sure that no one helps me like my fiance does, from making food special for me that he knows I like so that I eat even when I have no appetite due to this disease to trying to carry me to the bathroom even though maybe I am a bit too heavy and he’s not quite strong enough for him to do that haha.
29. I’m involved with Invisible Illness Week because: I am tired of being judged, but more than that I don’t want the kids I know to be judged and to feel the fire unbelievers can have in their stares or their words. It has to change.
30. The fact that you read this list makes me feel: like you are awesome!
My Caffeine Problem
After multiple meetings with my neck PT and her partner in crime aka the pool lady, it has become apparent that I have a caffeine problem. I have been chided. It has been recommended that I try tea but the ones I have gotten either smell/taste like rotted plants or contain things I am allergic to. It’s incredibly frustrating.
It seems to me right now that I am stuck between a rock and a hard place. My fatigue has been bad enough for years that I just have kept taking in caffeine. I didn’t have a choice really – going to school and working, both full-time, requires a certain amount of being awake. Even then, I would fall asleep in classes or nearly do so at work.
I still feel as though I haven’t really a choice here. I have to work full-time to pay all my grossly expensive medical bills, buy meds, pay rent, and eventually have a wedding. As it is, sometimes I am living paycheck to paycheck because of the hours missed due to the pains and limitations that pop up with this damn illness.
Even with the caffeine, I sometimes fall asleep at work. I can fall asleep standing, trying to dance around, sitting, and just about every other way to be captioning phone calls. Heck, I can fall asleep just about anytime other than when I actually crawl into bed it seems – even in the bathroom. I’ve brought this up to my GP and he responded that I should just continue to imbibe these caffinated drinks until my arthritis is under control…
He’s a good doc but I don’t gather he knows as much about my illness as he possibly should. I have never really had it under control. Heck, I have a friend facing a bone marrow transplant because of the same inability to get this under control. She doesn’t know how I can work and make all of these appointments and do everything like I do. Sometimes I don’t know either!
I sense a med change in my future, whether good or bad. Will I get to the point that I can be actually awake during the hours I’m required to be? I really don’t know.
For now I think we are at the point where I’m going to have to transition from fancy coffees to regular-ish coffee and possibly think about the notion of caffeine pills. No one I’ve talked to about this seems to think it is a good idea. However, 90% of my meds cause drowsiness on top of my fatigue. I can’t function without these meds. I have terrible insomnia (painsomnia!) at nights and even have a condition where waking brain waves interrupt my REM sleep. It’s all fine and well for everyone to tell me to stop taking in caffeine/soda/coffee/etc when they don’t have to see what happens on days where I can’t exactly function due to any of a myriad of things. It’s all great to talk about working out up to 4 days a week and asking me to do exercises 4-6 times a day when you don’t know just how much energy it takes to just put away the dishes or laundry or shampoo my hair.
People mean well with their recommendations but it gets really difficult trying to actually carry them out. I have to work to see docs and PTs so they can tell me to not take in this or that which will limit my time to work and then my insurance disappears and I can’t see any docs anymore.
Sigh.
I did my enbrel shot last night and so I’ve been achy and angry all day. I thought the Batman shirt would help, but apparently not when you combine it with grumpy pants.
Sleep Studies Suck
And it’s not just cause of alliteration.
I toss and turn like a banshee in the night and I like to be on my side – both things that are made much more difficult when you’re attached to 36 wires.
But I’m getting ahead of myself.
I got to the sleep study and waited for about 10 minutes for a sleep tech to take me and the other two gals back to the orientation room. We heard a dude talk about the dangers of sleep apnea and what a sleep test was like and then we were taken back to our individual rooms. My favorite part of it all?
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| A guy in a hospital bed! |
There was a House marathon! And I also had a spinning chair!
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| They should have known better! |
But looking at the shit I was about to be attached to wasn’t very exciting.
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| Those are hanging off my head?? |
My lab tech came in and glued the metal probes to my head and also attached other sensors to my face, chest, and legs. Then the trick was getting comfortable in bed with all that on…
That never happened. My neck wasn’t being able to get enough support because of the pillow situation with all those sensors. I also wasn’t able to really get on my side once I had gotten my fill of House. Sleeping in a bed with crap support wasn’t so fun either. Needless to say, Friday was not a good neck or back day at all.
I do not have sleep apnea, but they did observe something else called alpha intrusion. Basically, this means that my brain was sending waking waves during stage 4 or REM sleep. While they weren’t always intense enough to wake me, they were intense every time to bump me out of REM. This means that I was not getting enough restful sleep – which explains why I slept for 2 hours when I got home… after spending half an hour in the shower and using half a bottle of conditioner to get all that goo out of my hair.
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| Submit this baby to Playboy! |
This alpha intrusion is very common in people with pain and chronic illness. It’s a very interesting thing to learn about, as it isn’t anything I had ever heard before. I wonder how many of us deal with that?
It’s a Miracle!
Oh Enbrel, you make me have amazing dreams… and delusions of grandeur that I’m okay with having.
Wednesday, I had my appt with the NP at my rheumy’s office to clear me for Enbrel again after my debacle with my not-so-lovely sinus infection. And I had an amazing time. It’s not just because I love the office and everyone there, or because the NP is super sweet to me.
It’s because I had no swelling anywhere.
Let me say that again.
After 18 and a half years of swelling just about every day, I HAD NO SWELLING ANYWHERE.
Right? The fuck?
I was on the verge of tears in the office and everyone could tell. I just kept saying “okay, this is really weird” and “no, um, actually that doesn’t hurt at all.” My sed rate was 18, 18! My labs were all within normal ranges too.
I would seriously be lying if I didn’t tell you that I cried in the car before I drove home. This couldn’t have come at a better time. Mentally the last little while I have been… fragile is maybe too nice of a word. I have been crying myself to sleep, crying at work, pretty much just crying. I thought maybe it was the combination of reading The Time Traveler’s Wife and letting myself have my semi-annual full-on period. But I think it was a little more than that. I didn’t bring it up with the NP but I did indicate it on my pre-appt worksheet so there’s that at least.
In my last post, I mentioned that I had been able to run and hit the gym. Grand total in the last week – about 4 minutes of running, a good amount of fast walking, and two trips to the gym. And despite bits of chocolate sneaking into my diet, I have been pretty good at sticking to paleo foods. Last night I turned down pizza from my favorite GF pizza place right down the road for a salad. This is huge. Pizza is my favorite! But this also may have something to do with the fact that last Saturday I had a nasty migraine and threw up their pizza… which tasted the same coming up. That was weird.
So anyway! Enbrel and I got busy with each other last night. I’m glad to have him back in my life. We kicked Arava out of our med bed. Three’s a crowd, right? I needed this good news so much. I felt like I have been trying so hard and getting nowhere, on a gigantic treadmill from the ‘fuck you’ company. Now I feel like I’m getting somewhere, somewhere awesome.
In two weeks, the boyfriend and I will be off on our vacation to trek Civil War history – Gettysburg, Antietam, Harper’s Ferry, and the Shenandoah Valley! Needless to say, this Enbrel and happy news will (I hope!) make this trip easier than my mind keeps thinking it will be. My meds and my House MD cane will be trekking around in history mud. I’m pretty excited!
Help Me, I’m Melting!
It is fucking humid as all get out today. Seriously. This is so fucking lame.
I’m really sorry for the language, but seriously? Seriously you guys. The weather is supposed to be like this ALL FUCKING WEEK. Shoot me now.
The inside of my bones and joints are on fire… No, that’s not accurate. It doesn’t capture the ferocity of the pain.
The insides of my joints are turning to molten hot fucking lava. LAVA. I have lava inside of me. It moves so quickly, it’s like I can’t do jack to calm it. Adding heat makes it worse, but adding cold does too – because then some of the lava feels like it’s hardening and that’s super uncomfortable.
Because of this, my joints feel so shaky and weak. My wrists and hands are really going at it today. I should totally go to work for the money and the hours, but I really am thinking it’s a no-go.
I don’t want to downplay the pains associated with ‘traditional’ arthritis, osteoarthritis – because I know that it is very painful. But this is not anything compared to the kinds of pain that your grandma dealt with. I’m sorry, it just can’t be. The lava feeling is right on, but I just… I can’t explain to you how super painful this is right now.
On top of lava, everything aches. Muscles feel like I built a house over the weekend all by myself. I get chills and sweats. This fucking rash on my knees just won’t leave. I almost threw up my meds this morning, because my body was all “oh no you don’t, you best eat some food.” Then when I ate food, it was still so fucking mad.
This is how it’s always felt for me when I start going downhill. Sometimes I think about how this is how I’ve felt for 18 years. I imagine another little kid going through this and I lose it. No one should go through it. I never thought about how painful this was for me for my whole life. I never think about that I was 5 and going through this. But I was. I was so little.
I’m not trying to complain, but I want to show how this really feels. So many people don’t know and could never understand. I’m so grateful for them, but for the rest of us we need some better vocabulary or something.
Fuck this shiiiiittttttt.
The Biggest Decision I’ve Ever Made
This semester has been pretty difficult on me. I’m not ill with other things, like pneumonia or other respiratory illnesses like when I was on MTX. Unlike last semester, I don’t feel 100% dead. But I am struggling. In thinking about things the other day, I came to the conclusion that school is no longer a real option for me. And, whereas last semester that would’ve freaked me right out, I’m okay with the decision now.
At this point, Arabic specifically is being offered earlier and earlier. It continues to force me to get up earlier and earlier. Unfortunately, it makes it very difficult for me to handle my disease. My Humira I think isn’t helping as well as I thought it would. Hopefully it’s just a matter of adjusting dosages. I’m also in so much pain lately. And it’s not just an arm or a shoulder – it’s my knees, my ankles, my hips – all those things you need to move around and do things. Even though my job is a lot easier, I’m still finding myself having to make the decision between whether or not I can go to school or to work – and I have to be able to support myself financially.
Sadly, I don’t think that other people understand what I’m going through. And I don’t expect them to. If someone sees me at work and knows I wasn’t in class because of my disease, but I seem to look fine, it’s hard to understand I know. And I am thankful that so many people won’t know what I’m going through.
It’s just about reevaluating my life. My plan was to work with the UN – in order to do that, you get stuck in the worst health countries first so you can work your way up. I can’t do that. Then I thought I should be a professor – but if I can’t even make it to classes to teach, what is the point? Why should I continue to accumulate loans when I can’t possibly do what I want to with my education. I have learned Arabic, which is something I always wanted to do. And I will always study that part of the world, because it’s fascinating.
But more fascinating to me is my own body and the struggles it goes through. I value more the comments I get and friends I have made because of blogging about my experiences. I have helped people just by being me, and that’s amazing. After reading books and talking to their authors, like Christine Schwab, I know now what I want to do. I’ve been working over the past few days on a book about my experiences with my disease. I hope that it will help others, and I know that it is already helping me.
Now I just face the tough decision if I should really finish my classes this semester. It’s not a good thing to receive bad grades, for sure, especially not for a former overachiever like myself. But at the same time, I don’t think it’s worth the stress to worry about my grades at this point. And again, I’m somehow okay with all of this. I don’t even know how.