Nearly 1 in 5 adults are affected by arthritis. That is over 46 million people.—I am one of those 46 million. I suffer from Psoriatic Arthritis and Fibromyalgia. Both severe auto immune conditions that cause inflammation of the joints and muscles. Currently, there is no cure for Arthritis and it is one of the most prevalent chronic health problems and the nation’s leading cause of disability among Americans over age 15.
During the Summer of 2005, at the age of 19 I was working at Starbucks and noticed that I began to drop steaming containers of milk for no reason. I began to have severe pain in my hands and had trouble closing my hand into a fist. This made it hard for me to get ready in the morning, and do simple tasks such as wash my hair and put it up in a ponytail.
I went to see my doctor and he suggested I get tested for Carpal Tunnel, as I spend many hours at a computer he was seeing it more prevalent in young adults. I went to the hospital and they connect wires from my middle finger to my wrist and electrically shocked me over 12 times in each hand. My Carpal Tunnel was not the issue. But they couldn’t seem to figure out what was.
For months on end I went undiagnosed. It soon became challenging for me to pull my comforter over me at night. I had moved back to school and into my Sorority House. I had to ask for a room on the 2nd floor because I was having trouble walking up and down the stairs. There felt like no end in sight. In October of 2005 I found a General Practitioner that started testing me for Lupus and numerous auto immune diseases. Lupus came back negative, but I had Psoriasis and a high Rheumatoid factor. So I was in this small group of people that technically could have both Rheumatoid Arthritis and Psoriatic Arthritis.
The doctor pointed me in the direction of a Rheumatologist, an Arthritis specialist, and I was on my way. There weren’t many doctors to choose from in Eugene, Oregon. So my mom drove down and I remember the day like it was yesterday.
The doctor I saw had a thick Russian accent and I remember her walking into the room and not explaining a thing to me. She told me I’d have to start taking this medication called Methotrexate, and I couldn’t drink or have children. Now, I was 19 at the time and a sophomore in college. Telling a 19 year old that they won’t be able to enjoy their 21st birthday was devastating. Now, in hindsight, the drinking part wasn’t that big of a deal, you have these fantasies about how your 21st birthday is going to turn out, and my mom can attest… it was kind of a flop- on my part that is.
The other thing she told me was that I couldn’t have children. And about 2 seconds after that came out of her mouth there was a knock at the door and a nurse said to her, “ Room 2 is ready for the injection” the doctor took the look on my face as an opportune time to give me a little processing space and left the room. Which to me said, “I have bad bedside manners”. I immediately looked at my mom and said, “I want a second opinion.”
So we got up and walked out. We got in at NW Rheumatology Associates in Portland and I was dedicated to driving to Portland for appointments for the next two years of college. I remember telling myself that day in the doctors office in Eugene was that there was no way I was giving myself a shot…. Little did I know, I’d soon become a Pro.
I spent the summer of 2008 in Europe in excruciating pain and a giant Kankle.. Yes, the Kankle became a joke among my friends I traveled with in Europe. All the walking and changing in altitude was not helping out my enormously swollen left foot.
After moving to Seattle in the fall of 2008 I struggled to find a doctor in Seattle that would treat me for Chronic Pain. I still didn’t feel as though I had my pain under control and my Fibromyalgia was beginning to spiral out of control. After an 8th month search/wait I finally found a doctor and team that was willing to treat me. I can now say I work with one of the best doctors in the Nation and they are helping to find me a treatment that works for ME.
What I didn’t know until recently was that my first few years with arthritis were nothing, compared to what I’d go through this year.
During my junior and senior years of college I struggled taking the Methotrexate, a mild form of Chemo Therapy. It works in conjunction with the injections I give myself once a week. The problem is it makes me sick. Some weeks I’m fine and others you will find me in bed on Wednesdays and Thursday because I’m so nauseous. This was a struggle during school having to miss days and even assignments. Most of my professors understood about it, which was amazing.
Now in the working world this is a different story. I don’t have the luxury of time to make up my time I miss. Thankfully, my job is in the healthcare field and working with Arthritis patient Advocates, so my work, and co-workers understand what I’m going through to an extensive degree.
When I first changed Doctors in Seattle, after reviewing my chart had decided that they didn’t feel comfortable with my original diagnosis in Portland of Rheumatoid Arthritis, even though I could have been considered for both Rheumatoid or Psoriatic Arthritis. They explained to me that my Psoriatic symptoms were more prevalent, but there aren’t very many key markers on whether someone in my position is more Psoriatic or Rheumatic, but because I had Psoriasis and my pain was A-symmetric on my body they leaned more toward the Psoriatic Arthritis. Now, the problem with this is, because doctors don’t know as much about Psoriatic Arthritis there aren’t as many treatments for it. So this narrowed my treatment options from about 8 to 4. So now you can see why it is so important for me to support the Arthritis foundation in finding a cure, or researching more treatment options for others like me with Psoriatic Arthritis.
I told my new doctors in Seattle that I wasn’t sure how the Injection medication I as prescribed by my Portland doctor was working, because I had nothing to compare it to. I was still in pain and maybe we could do better. So we switched it up and I started a new Therapy. I tried this until December of 2009 when I began to feel a numbness and tingling in my left foot. After evaluations my doctors suggested that I stop the injections because the side effects could have been causing me to develop multiple sclerosis. So until I spoke to a neurologist they didn’t want me to continue with Therapy. So they upped my Methotrexate and left me without anything to fight off my arthritis and protect my joints.
In February 2010 I got clearance from the Neurologist that the Injection medication was not causing my numbness and I was clear to go back on Therapy. I didn’t feel as though my first thearpy in Seattle was cutting it, so we decided to try a new drug on the market. After a struggle for insurance coverage for the new therapy I began to have massive flares. Now, I previously thought I’d experienced Arthritis pain, but after three days of being bed ridden I hadn’t seen the worst of it yet.
Every morning I woke up freezing because during the night I couldn’t pull my covers over me. I would call my mom crying because I couldn’t stand up from my bed. By the time I got myself standing and in the shower I got stuck in the shower—I was unable to lift my leg out of the shower. So I sat for hours in the shower unable to move when finally I forced myself into the pain and crawled back into bed with wet hair. I was unable to put my hair in a ponytail because I couldn’t get my hands to make a fist, I couldn’t even hold a hair dryer let alone a phone to my ear. I felt helpless. It was nothing like the Tylenol commercials with the old lady gardening and rubbing her hands. It was about 100x worst then that. I was constantly fatigued my muscled ached and I was not in the mood to do anything. I was miserable, to say the least.
Not many people understand what Arthritis is and how if affect millions of people everyday. I have started a new treatment and am starting to slowly feel like myself again, but we are still so far from a cure or even more treatments.
Over the past 5 years I’ve struggled to find a treatment that works for me. Not many people truly understand how debilitating and painful Arthritis can be, especially for a young person. This holiday season I will tie bells to my shoelaces and dust off my reindeer antlers as I participate in the Jingle Bell Run/Walk® for Arthritis, a 5K fun run/walk to benefit the Arthritis Foundation. And YOU can help, too!
I need your help. There currently are only 4 treatment options for those with Psoriatic Arthritis and I’m running out of options fast! The sooner a cure is found, sooner we can help millions of people have hope in their future. Arthritis affects more than 46 million Americans, including 300,000 children, costing the U.S economy over $128 billion annually. The Arthritis Foundation needs our help, and so do I.
You can Help!
Please join me to walk or run on Team String-a-ling at the Seattle Jingle Bell Run/Walk® for Arthritis or make a donation to help find a cure. I need your help. There is no cure for Arthritis and this is a disease that will haunt me for the rest of my life. But with your help we can make the future a little brighter for others.
Thank you for taking the time to read my story. Everyone has a different story. Not only have I been affected by Arthritis, but my family and friends have to.
Cheers,
Staci
A Special thanks to those who have signed up to Walk with Me or have donated to support me. Words cannot describe how thankful I am.
If you were to ask me a Month ago, “Staci, How are you” my answer: “AMAZING”. If you were to ask me within the past three weeks, my answer: “Awful”.
But, before I fill you in I want to start with a quote I literally just read moments ago and inspired me to write tonight.
“I believe everything happens for a reason. People change so that you can learn to let go, things go wrong so that you appreciate them when they are right, you believe lies so you eventually learn to trust no one but yourself, and sometimes good things fall apart so better things can come together” — Marilyn Monroe
Two weeks ago tomorrow I went to the hospital because I thought I had a blood clot in my leg. Well I was sent on my saying that all was fine and to take some Tylenol. Well after driving to Portland and back my Arthritis flare I’d been having for the past month and a half shot my body into over drive and shot the clots with it. Where they parked… in my lungs.
I got out of the car late Sunday evening after spending the afternoon in Portland with my mom dreading the car ride home. Something didn’t feel right and I had a huge urge to stay in Portland. But I left knowing I had a big day at work ahead of me. So I put my book on tape, “Hello Vodka, it’s me Chelsea” by the lovely Chelsea Handler on and Drove North.
I parked in my tiny little parking spot on the Top of Queen Anne hill and filled my arms with my computer, my duffel bag, and numerous shopping bags from the weekend adventures. I dragged my butt up three flights of stairs and about midway up the 2nd one I started having trouble breathing. This, had never happened before. Now I know what it feels like to be out of shape and walk up the stairs, but this was like nothing I’d ever felt before. Maybe it was the extra baggage, but I burst through the door to my Roommate yelling, “are you okay?” I replied, “No” and went to my room closed the door sat down on my bed and tried for 10 minutes to calm down and catch my breath. I was terrified. My left calf felt like it was going to explode it was so tight. I called good ol’ Papa Stringer for some Ice vs. Heat on muscle strain and he said Ice. So I put my leg up and Iced while I fell asleep.
Monday morning I woke up early to get into work and finish some stuff I was supposed to do Sunday night. Stopped at Starbucks for my Morning coffee and a Giant Banana for my tight calf.
I arrived and walked up the two flights to my office and again began to felt winded. I had no idea why this was happening, I walked up these stairs every day. I got to the top set all my stuff down and began to feel the room spinning, I heard my co-worker in the cube near me she had come in early as well. I yelled for her telling her I thought I was going to faint and she and another co-worker came over running. With the banana still in my hand I laid in my sliver of a cube staring at the ceiling wondering why all of a sudden this was happening, and on the worst day it could possibly happen work was crazy this week– There was no time to be sick.
I lay on the floor for 15 minutes with a wet rag on my forehead breathing until I felt stable. I sat up wrote my supervisor an email and said I was going home. Another coworker drove me home, and I insisted we go to my apartment because I didn’t want to go to the ER I didn’t think it was that serious. None the less I Cooperated and at least left my car at the office. I recall that day being one of the muggiest days in Seattle thus far. I continually couldn’t catch my breath and called an old roommate to take me to the Emergency Room.
Mia, the amazing friend that she is raced home from her Interview, and spent her Monday in the Emergency Room with me. We arrived I had my People Magazines in hand knowing it would be awhile until they saw me, but to my surprise a Pulmonary Embolism is kinda a big deal in the ER, Especially when they didn’t catch it the Friday before. So As I handed the Admitting Nurse my ID and Insurance card I was crying and almost immediately I was called into the Triage Nurse’s station. They took my vitals and lead me to a gurney in the middle of the hallway.
The Triage Nurse hooks me up to oxygen, one of those tubes that comes out of your nose and I could Slowly feel like I could Breath again. The next thing I know this giant Ethiopian man in scrubs walks up to me with a gown and says, “Take your shirt off, and put this on” he throws the gown at me and attempts to close the curtain that around my hallway oasis. I struggle to pull all the heart monitors and cords hanging from my body off with out everyone in the lobby getting a free show! When He asked if I was finished and I said no he then asked if he could help… I sternly said no I may not be able to breath, but I could still take my shirt off on my own.
When I was finally ready he came back in and attached 10 stickers to my body and attached 10 cords to those stickers all focused around my heart, He did an EKG it was over in an instant and I didn’t feel a thing. Next I knew I had a room. I was being wheeled down the hallway to a shared room. The man next to me was on the train up from Eugene and something happened to bring him in. Next I new the Machine reading my heart rate started beeping rapidly, but I was fine. The Visitors to my Roommate were whispering if they should make sure I was still alive, and I saw some curious eyes peering from behind the curtain. After about two minutes of beeping I called the Nurse to turn it off, I was still alive.
I was taken back for a Chest X-Ray and a CT Scan. As soon as they brought me back I asked that Mia come stay with me. And about 45 minutes after she came back the ER doc popped his head in and said, “I’m admitting you, you have clots in your lungs I have a bed for you upstairs” My eyes welled up and I began to cry.
What does this mean? How do they go away? How long will I be in the Hospital for? I need to call my parents! Were all the things running through my head at that moment. Why had the doctor not stayed to explain to me what was going on? I was clueless what this meant but I was trying to keep it together. I asked the Nurse to dial my mom as I had told her earlier I was going to the ER but told her to Stay put in Portland until I knew what was going on. Being Admitted called for Mama Stringer to the rescue. The nurse dialed the number and I lost it. I’d never spent the night in the hospital, not since I was born. I had Mia call Teresa, my Roommate who Immediately packed up my computer and a few personal items for my stay. Mama Stringer was on her way.
Next thing I knew a Nurse was in my room telling me that I had a visitor and that she knew I’d been text messaging from my gurney and gave me a stern lecture, What the hell lady, I’m in the hospital alone, I don’t give a shit if it screws up your million dollar machines! She wouldn’t let Teresa back with Mia in the room. So I sent Mia home, but next thing I knew they both showed up! Teresa with Flowers and some chocolate covered Pretzels with Peanut butter, granted I hadn’t eaten all day and wasn’t supposed to incase I had to go to emergency surgery (not sure what for, but none the less I was told I couldn’t eat or drink until I saw a doctor).
Teresa relieved Mia and I was wheeled to the 8th floor, Teresa in tow. I arrived at 816 SW with a beautiful view of the city. That was the only good thing of the room, granted I probably paid more for the view. When they wheeled me in there were turquoise socks and toiletries all i saw were dollar signs (Cha Ching!)
Nurse Megan came in, she was young sweet and told me I was the youngest person they’d seen in on the floor in weeks! She asked me a bunch of crazy questions about what I came with, and my religious wants and if I would like extrodinary measures in the event that I were to be put on life support, my heart stopped for a mere second. Megan informed me that I could order food, but not until they got doctors orders- it was 6pm and I hadn’t had anything to eat or drink since the banana I ate at 7 am. I was dehydrated and starving and the chocolate covered peanut butter pretzels tasted like heaven, probably even more so because they were my forbidden fruit.
My iphone battery was at 31% and slowly dying, I had to screen my text messages to family and close friends. Mama Stringer was still 2 hours away and I’d yet to see a doctor, it was 7pm. Teresa and I had a long discussion about friends and the lessons we’ve learned Post college. Now that its been 2 years I’ve definitely learned a lot and realized my expectations for everything in life were set to high. It’s not a bad thing, it helps you get through life, but when you’re at a low the expectations can be set way too high and make you lose hope in achieving them.
8:30pm John calls me. He insists on coming to visit me. I said no, but the next thing I know my amazing Friend John shows up with an iphone cord. I love him for this. But even more for caring enough to ignore me and still show up. It was so nice to have another familiar face, I still didn’t know anything.
Next thing I now, Mama Stringer walks through the door. I couldn’t be happier to see my Mom. We both cried as we hugged.
Teresa was off duty went home and the Doctor showed up at 11pm. She was amazing. Listened to what I’ve been through over the past 5 years with my Arthritis and told me she couldn’t believe I still worked with everything I’ve been through, when truthfully, the thought has never crossed my mind to not work or contribute to society. The doctor put me at ease and said I’d be on blood thinners for at least 6 months but there could be other factors to the clots. She said most people are in the hospital for 5-10 days with blood clots but she thought I look as though I was doing well and I could go home on Tuesday or Wednesday at the latest.
She ordered some meds and Mama went to my apartment and I went to sleep.
Tuesday September 27, 2010-
I woke up at 730 to my normal Tuesday alarm. I went in and out of sleep and at 8 am began to hear the nurses and doctors begin rounds. I sat up and was having trouble breathing. I pushed my call button after sitting up for 10 minutes and my breathing didn’t get better. My new nurse for the day Lisa came in, i was her first patient and she spent 45 minutes with me trying to make the tightness as though someone was stepping on my chest go away.
Finally some relief. I spent the day in bed feeling slightly better. At around 3pm a new doctor came to talk to Mama Stringer and I, he gave us some more information and and said if I could walk around the 8th floor I could go. So I jumped (aka hobbled) out of bed and took a little stroll around the floor gown flapping in the wind and all. I came back Dr. Hough came back and I told him I was a little out of breath but it wasn’t bad. He told me that I would probably be short of breath for while but that was good. He discharged me and right as I was signing my paperwork a roommate arrived. She was 85 and not looking too great. I was happy to leave because by the sound of her breathing, I wouldn’t have gotten any sleep that night.
I spent Wednesday resting with my Mom and Thursday working from home and at the Doctor office of my Rheumatologist. They came to believe I may have a blood disorder, Lupus Anticoagulant syndrome (LA) which makes me prone to clotting. They switched up my arthritis medications and took some blood for testing and sent me on my way. I said goodbye to Mama knowing I’d head to Portland the following Friday to Cheer Teresa on at the Portland Marathon.
I fell asleep Friday night and forgot to take my blood thinners ( a now normal routine for the next 6-18 months) I woke up Friday Morning to work from home and had this weird feeling in my back. I must have slept wrong. I called my primary care doc to see if I should take the meds or skip them. She told me to skip but asked me how I was feeling, I slyly mentioned the pain in my back and she followed it with a list of questions, after my responses she said, Staci, you need to go back to the Emergency Room. I began to cry why do I need to go back, what was wrong now?
So I jumped in the shower, called my work that I wouldn’t be working from home and packed an over night bag in preparation that I’d be spending the night on the 8th floor again…
I drove myself to the ER and was seen immediately again. I think the nurses were shocked when I walked in and said, “Name Staci Stringer, Birth date 5-1-****, History of Pulmonary embolism, psoriatic arthritis and fibromyalgia” They looked at me like… are you a doctor as well? They took my vitals and showed me to a room. The nurse was at the door a familiar face, she looked at me like, I’ve seen you before.. I responded, “yes you saw me last Friday, I came in complaining of leg pain thinking it was a blood clot, you did a ultrasound and sent me home… I had a blood clot, its now in my lungs” the look on her face was sheer and utter “oh shit” moment. She hooked me up to monitors and continued to ask me more questions about what I’d been through in the past week since I saw her last, now granted it wasn’t the Nurses’ fault she was not the Ultrasound tech that cleared me to go home.
They hooked me back up, did yet another EKG, Xray, CT Scan and didn’t find any more clots, but this time a Pulmonary Infarction, a small piece of my lung tissue is now dead or dying. The blood clots had deprived my lungs of oxygen for too long and now it was dead. I was all alone in the ER hearing yet more bad news. I had no idea what this meant or if I needed to be admitted again. So the doctor consulted with a Pulmonologist and the piece of tissue was so small they let me go home, but not without an appointment for first thing Monday.
I called my family filled them in told my Mom not to come unless she wanted to come Sunday for my Monday appointment. I headed home to rest for the remainder of the day.
At about 6pm the Nurse from my primary care physicians office called to check in on me, I said, “Randy, you were right it’s a Pulmonary Infarction.” The sound of her voice was like I told her I was going to die tomorrow. It was terrifying. Her concern was so sweet but it overwhelmed me to the point of fear. I had been attempting to research it all afternoon so I would be prepared for Monday’s appointment and know what to look for over the weekend. The worst case senario was instant death, I knew that wasn’t the case I was still alive. But I still was concerned. Teresa walked in the door from a long day at work to find me in hysterics on the couch. She consoled me and I knew I needed to Call John’s dad a Pulmonologist at Standford to at least put my mind at ease for the weekend. And that was exactly what he did. T and I sent Friday night catching up on TV shows we missed and headed to bed early.
We spent Saturday preparing for her birthday brunch on Sunday and Me secretly prepping for her Surprise birthday party that night. Everything went off without a hitch. Mid party I started to feel weird though Anxiety came over me and I started to cry. So I grabbed a friend and headed home. As soon as I got there I was exhausted but couldn’t sleep. I laid in bed feeling this pain moving from the middle of my back, like someone had their hand around my rib cage and was squeezing to this pain in my left upper chest. A pinch in my neck and a faint ache near my heart. I studied the pain, asking myself all the questions Johns dad had told me to look out for, Was it a new pain? was my breathing different? I laid for an hour before making the decision that I needed to go back to the Emergency Room.
I burst in to Teresa’s room, because I had actually specifically asked if she would spend the night at the apartment in case something like this happened. But, weird, it was her birthday and she had a phenomenal birthday at that- she wouldn’t wake up. So I called Mia, again. The amazing friend that she is she rolled her butt out of bed at 330am and accompanied me to the Emergency room, once again.
They hooked me up did another EKG and monitored my heart. I had just recently had a CT scan and they didn’t want to put me through yet more radiation so after monitoring me for 3 hours and consulting with a Pulmonologist and a ICU doctor they decided it was normal pain and that I should pay more attention to the breathing than the pain. If anything I was happy I went just to get this information. Every little pain comes with an million and ten questions trying to decipher if the pain is new or old or more intense…
But I was at more ease with what was going on. Mama showed up again on Sunday to go to the Pulmonologist with me. We went on Monday and we both loved this doctor. He had actually studied my chart. He knew about my arthritis and answered ALL of our questions before we could even ask any.
It turns out I have multiple clots in my lungs and a small portion of my lung tissue is dead, its about the size of a pea. The pain I’m experiencing is what they call “referring pain” the nerve endings from the dead lung tissue of redirected to my neck and left chest by my heart. So the pain I’m feeling is the pain from my lung tissue dying. No big deal right. I will feel this pain for awhile but it will get better.
I found out on Tuesday on the drive back to Portland with my mom that I do in fact have LA, Lupus Anticoagulant Syndrome. Which means I will probably have to be on the blood thinners for longer than expected/hoped. I look like a heroin addict with bruises from the blood draws and the injections. Those will continue to be there as I have to go in once a week to be tested.
All in all I’m on the mend and I will be okay. This is something I can manage, and that’s a good thing. People have come out of the wood work to show support and love for me and it continues to give me strength everyday.
My friends mom posted that quote of Marylin Monroe’s on Facebook tonight and it struck a cord with me:
I believe everything happens for a reason. – If I wouldn’t have forgotten to take my blood thinners I would have never gone back into the Emergency room. This event is making me stronger and making me re-evaluate people in my life and how I live my life.
People change so that you…can learn to let go, People in my life have changed and I’ve changed, I’ve always had an issue with change, but I’m slowly learning to embrace it. I think that is the hardest lesson I’ve learned post college. You think some people will always be there for you, and they won’t, and that is okay. We’ve gone in our separate ways, but that doesn’t mean that you don’t have a million other people who will. I’m learning slowly… to let go.
things go wrong so that you appreciate them when they are right, I’m not taking a single day for granted or a single feeling for granted I know when things are good, and I know when things are bad, but I’m always looking toward the positive now. I never did that before.
you believe lies so you eventually learn to trust no one but yourself, I’m learning to trust myself more and more each day. I listen to my body and what I’m feeling, I know my limits and I know when something is wrong. I knew I had a blood clot in my leg, but the Ultrasound techs sent me home anyway. I’m not someone who goes to the doctor for a cold or the flu I push through because I know they will tell me fluids drink fluids. But with this issue I knew something was wrong and I went back twice. I know to trust myself more often. I now more than I think I do.
and sometimes good things fall apart so better things can come together.No words for this it stands alone.Enough said
So that is where I’ve been and what I’ve been through for the past three weeks. BIG Thank you to Mama Stringer for everything, the car rides to Seattle and the love, support and Hugs you are my everything I don’t know what I’d do without you. To my Dad and Brother for your constant concern and love, Julie Grauert for your friendship, support, laughs (even though they make my lungs hurt more) and the entire Grauert Clan for the flowers and love. Thank you to my best friend Jessica for constantly checking in on me even from across the world in Gulu, Uganda, your voice gives me strength and I wish you were here. to Mary Klum for being my rock. Mia Sumic for the MULTIPLE car rides and hours at the Emergency Room, I don’t know what I’d do without you, you are simply an amazing woman. Teresa Jordan for babysitting me and staying with me at the hospital, for your love, laughs and silliness. To my co-workers for your constant concern and support it’s amazing to work in an environment and with people so compassionate and caring. A special thanks to Randy, the Nurse at Swedish Queen Anne, your constant concern for me has shown me that people are compassionate for those they’ve never met. Your calls and support have meant more to me than you’ll ever know.
To anyone else I missed thank you. The support, notes, texts and Facebook messages truly mean the world to me.
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