Earlier in the year I decided I was going to LIVE! I set up a plan to enjoy this beautiful corner of the world we live in. Little did I know that life had other plans for me. Ironically enough the year I decided to live was the year my body decided it was going to wage a war... Against itself.
Last year from summer into fall I noticed I'd come home from a one hour photo session and nap, this was unusual for me. I normally come home, load the photos, cull my session and send out sneak peeks. I thought maybe I was over doing it. Then after it kept happening and my ability to concentrate started to decrease I thought that I was possibly falling into a bought of depression. I always have a hard time when fall and winter come, it made sense. Fast forward to the beginning of February this year. My thighs were bothering me, the muscles felt weak and tired. I was familiar with the feeling, I'd have it every month. Except this time when my cycle ended the discomfort stayed. The last week of February I made an airport run in an awful snow storm, I gripped the steering wheel tight for the long, grueling drive. By the next day my wrists were hurting, I was certain it was from the trip the night before.
My next cycle turned into five days in bed and a very unhappy body for months to come and still continuing. Day 3 I had an appointment with my Gyno so I brought it up then. I knew they were who helped steer my sister towards the endocrinologist that gave her a diagnosis of Hashimoto's, an autoimmune disease where the body believes the thyroid is an invader and attacks itself specifically the thyroid. As much as I wouldn't wish this on anyone I was lucky to know where to start since I was somewhat aware of what my sister has been dealing with (little did I know that I actually had no idea just how bad it was until I started feeling the same way. They say no one gets it until they get it. Ain't that the truth). The only thing they could test me for was basic thyroid levels not the full thyroid panel needed to test for Hashimoto's. I left that appointment and went straight to my GP. He ran a ton of blood work testing me for Hashimoto's and a bunch of other things.
The only way I can describe it is like having the flu but worse. Joint pain in my hands/knees/hips/elbows/feet. I'd have difficulty doing regular tasks because I had cramping in my hands and I was dropping things. I had muscle pain/weakness in my legs and arms, occasionally my legs would give out on me. My body felt too heavy to carry around. I was beyond tired all the time by this point, fatigued. I'd go to bed knowing I was going to wake up even more exhausted than I already was. I'd need to rest after taking a shower. I had trouble walking across the parking lot at work. Nevermind going up to my third floor apartment! I was getting headaches more often. It hurt to walk on my feet after being off them for a period of time. I was having gi issues. My arms and hands would wake me up frequently in the middle of the night because they would tingle and they hurt. My skin felt like it was burning from the inside out. Yet my feet and hands were freezing cold. I occasionally feel like I'm on drugs feeling dizzy/off balance and disoriented. I developed a rash on my face that comes and goes, I can tell you when I have it because I feel generally unwell - feverish yet I had no fever and my face has that same burning sensation.
The scariest was the cognitive symptoms. Imagine going out to your car because you have to drop something off to someone, you've been to their house about a dozen times in the past year, you know the name of the road their street is off of, and you know that road well but you can't remember how to get there... In the town you've lived in most of your life. I had to sit in my driveway for a good fifteen minutes trying to remember which way I had to go to get to that road. I eventually figured it out but I'm not going to lie it freaked me out. It also comes in the form of forgetting or using the wrong words mid conversation. Spacing out and the lack of concentration fall under this category too.
Five days had passed since I had the blood work done. I called my doctors office. He called me back and tells me my white blood count was a little high and my vitamin d was a little low. I asked if that was it. He says "oh. You tested positive for lupus." ... It was like running full speed into a brick wall. I honestly expected him to tell me I had Hashimoto's. (Both are autoimmune and both can effect your organ so not sure why it freaked me out so much) Lupus is where the body thinks your tissue is an invader and attacks the tissue. My doctor instructed me to start taking vitamin d and he referred me to a rheumatologist. That night I had tremors, it wasn't visible but I was having my own personal earthquake inside of my body. I was nauseous. When it stopped about twenty minutes later, I had an awful headache. I thought it was a panic attack, but now I'm not sure.
By the time I saw the rheumatologist in late March the symptoms were nowhere near how they were the three weeks prior. Now don't get me wrong I have yet to feel great since. My "good" is still tired and in pain but I can function. I went in armed with pictures of my rash (a huge indicator of lupus is a butterfly shape rash across the nose and cheeks). I also had a notebook full of symptoms, personal and family medical history and questions. My Rheumy is really nice. I instantly felt comfortable with her. She spent an hour with me. She listened to me. She asked me questions. We ended the appointment with another set of blood work to be done. She said she wanted to test me for viruses as well as lupus and rheumatoid arthritis. Despite my facial rash getting worse in front of her she wasn't convinced it was rheumatological, she was thinking hormonal. Turns out the positive lupus test was not a lupus specific test. It was the ANA that was positive with a speckled pattern. This is an indicator that something is wrong but it doesn't mean anything specifically. It could mean any autoimmune is present, it could mean cancer, it could mean liver disease or it could be a false positive. There are many diseases that present with the same symptoms but many do not show up right away in blood work. It makes the diagnosis process long and tedious.
It was not long after my March rheumatologist appointment that I noticed my finger and toenails started turning white and blue. I left a message for my rheumatologist asking for blood work results and let them know about the discoloration. That night I was sitting on my couch watching tv and my feet turned blue. I debated going to the er, I stuck them in the tub which helped but they were blue again by morning. This was one of the questions my specialist asked during my initial visit. I decided to go see my gp again since my specialist was away. He turned out to be away as well. The woman covering for him was able to get a copy of my labs, they came back normal except another positive ANA. She told me she believed I was in the beginning stages of autoimmune. She said my feet turning blue was indicative of lupus.
My rheumatologist reached out to me in response to my message and asked me to come back into the office on April 10th.
April 9th I went into the ER for chest pain. After an EKG, blood work and a ct scan they determined I was feeling the same inflammation as the rest of my body in the joints of my chest, who even knew those existed!? The next day a nurse from the ER called me a few hours before I was heading to my rheumatologist appointment. She said that my ct scan showed a spot on my lung. She told me that given my age and medical history the spot was literally just under the size they would be concerned about and that I shouldn't worry but she wanted me to be aware. She suggested I follow up with my GP. I had to stop by his office to grab a copy of the most recent labs anyway so I asked to speak to him. I was scared. I still felt sick and now I have a spot on my lung. My mind starts going. A positive ANA could indicate cancer or liver issues. What if I had Cholangiocarcinoma (what my mom passed away from), cancer of the bile ducts that shows no symptoms until it's too late. What if it spread? My doctor thinks I'm insane. He agrees to give me an ultrasound to check my liver (never did get a call with results, assuming it showed nothing) and he agrees to do a repeat ct scan in a year. But before he dismissed me he states that he is not impressed with my blood work and considers my only treatment at this time to be diet and exercise. I left his office in tears. How can I be "fine" when I felt so awful.
Armed with more pictures I head to my rheumatologist office. She was able to diagnose me with Raynauds. This means that my blood vessels react differently to cold and stress than most people. Instead of opening and closing slowly they do so quickly. This causes the extremities to noticeably change colors; sometimes red, white or blue. As they get warm again it causes pain. When Raynauds developed in your thirties it's a secondary condition to a number of diseases, coincidently all the ones that present the same so I still do not have any firm leads for what I have. She looks over the ct scan results when I mention the day prior in the ER. She tells me she also is not concerned about the spot on my lung, she said it is most likely scar tissue from a bad cough or something.
My next appointment with her we go over my symptoms. The newest being light sensitivity in my eyes as well as welts due to sun exposure and bug bites. By this visit Ive noticed a trend so I fill her in. The symptoms were worse the week before, during and after my cycle. I would spend anywhere from 2-4 days in bed a month with occasional single bed ridden days thrown in as well. I'd have one somewhat decent week a month. She tells me she has ruled out a virus by this point due to me still having symptoms. She still thinks it's hormonal based on the link to my cycle. I tell her how my last appointment with my GP went. She assures me that the pain I feel is legitimate. She reminds me that the pain in my upper body could not be due to me being overweight. She also tells me that she has Rheumatoid Arthritis, she too was told her symptoms were due to her weight or stress. It took her ten years to get a diagnosis
I have another appointment and I believe this was when she prescribed me with Diclofenac, an anti inflammatory. It seemed to help but a few days in I started getting stomach pain and a constant severe headache with bloody noses (I get bloody noses all the time since I was a kid so this may be coincidence). I ended up in bed for three more days. My doctor recommended I stop taking it immediately. We had to wait for the drug to be completely out of my system before we could try the next step. At this point I feel as if I've been stranded in the Atlantic flailing my arms to stay afloat but I'm swimming in circles getting nowhere all day long, every single day. Few people knew I felt this bad.
At my next appointment in September she prescribed me with Plaquenil, an anti malaria also used to treat lupus and rheumatoid arthritis patients. She informs me it takes six weeks to start working. I'm willing to try it since my research came up with positive feedback. She mentions that rheumatological autoimmunes can get flare ups due to cycles so I still don't know which category I fall into. Could be both since many people with autoimmunes have overlapping diseases.
In the weeks following I've started to get more headaches, dry eyes and eye pain. I made a call and was told to try eye drops. A few weeks later, about five weeks after starting the Plaquenil I develop a tremor. I looked like an alcoholic having dt's after a binge. I place another call and they tell me to come in immediately. I also had a few internal tremors since. My Rheumy tells me she believes it's a symptom of the disease but since I just started the medication she wanted to run more labs to check my electrolytes, liver and kidney functions. Guess what? Blood work came back normal. I can't decide if I'm happy my organs are well or upset that nothing is showing up to validate the way I feel and give me answers.
I am 8 or 9 weeks into Plaquenil and happy to report that I do notice a slight difference. My daily pain is not quite severe, I no longer feel like I am drowning and I can actually concentrate a little longer. However I do still find myself in a flare every month. During a flare my symptoms are heightened pretty severely. Making it impossible to function on even a low level.
Some days I can push through, Saturday was a high pain day. Sunday was a mix of pain and fatigue. By this morning I could barely move, my head is pounding, I'm feeling nauseous and needed to lay down pretty quickly after getting up. I'm waving the white flag today, giving in to my body so that I can heal and prepare for the next battle.
My lesson learned is not to take the good days for granted. To listen to my body, knowing when to push through and when to give in.
My intentions for this post are not to look for pity or sympathy. I want to give hope even if just to one person. I want people to know that they are not alone! I want to raise awareness. I want my friends and family to know that some days I truly cannot keep up no matter how bad I want to.
I like to think I handle the situation gracefully, albeit with the occasional meltdown. I still remain undiagnosed and probably will for a long time. Don't they know it's never lupus, except that one episode it actually was...
Some sites I've found helpful:
Butyoudontlooksick.com
Mollysfund.org
Instagram has a strong support system within the #spoonie community.
