#periodicfeversyndrome

[kathijamaryam]

Periodic fever syndrome is a group of disorders in which a child has recurrent episodes of fever over time, usually accompanied by the same symptoms. Each episode of fever usually lasts roughly the same length of time. These disorders are genetic conditions that are very rare.

 Click here to view and learn more about periodic fever syndrome.

#fever #periodicfeversyndrome  #typesofperiodicsyndrome#peridicfevercauses #periodicfeversigns #diagnosticprocedures #periodicfeversyndrometreatment #triggersoffever

#fever #periodicfeversyndrome #typesofperiodicsyndrome #peridicfevercauses #periodicfeversigns #diagnosticprocedures #periodicfeversyndrometreatment #triggersoffeve

[healthishealth]

Hello all! Haven’t done an update in a while and figured it was time. I officially finished my first semester of PA school and am proud to say that I finished strong. I could not have done this semester without the help of my fellow classmates, friends and family. I never thought I’d still have health issues at 31 or be enrolled in a master’s program during a pandemic, but here we are. The running diagnosis I have right now is Behçet’s disease, but the NIH thinks it might be a Behçet’s-like illness (research pending). For now, I’m happy because the treatment won’t change even if the name of my illness does; it’s a lot of trial and error, which can be frustrating, but it’s the hand I was dealt. The magic combo of drugs that seems to be working for me (knock on wood) is azathioprine and Remicade. I can’t believe I’m about to say this, but I have been fever free for over a month! I also haven’t been hospitalized for 6 months! I wish I could go back a few years and reassure my younger self with a raging fever of 105 that I wasn’t dying, so if anyone comes across a time machine, help a girl out! All kidding aside, I’m so, so grateful for my team of healthcare providers. Between the NIH and Cedars Sinai, I finally have a group of providers that not only believes me, but continues to search for answers. I’m currently on winter break, which has been particularly long this year due to COVID (silver lining). I will be returning to misery (JK…or am I?) this Friday. Okay, perhaps it’s not misery, but it’s definitely the hardest thing I have ever done in my life. During orientation, our professors warned us that there would be tears. Somehow, I figured it wouldn’t be as shocking when I broke down in tears almost weekly since they had warned us about it. It was almost as if the warning would lessen the blow of how difficult this program was, but I’m here to tell you that was not the case. The semester starts at an incredible pace, with 18 units of science and 2-3 exams per week at times. USC’s program is 3 years and I don’t know how other programs do it in less time. I know I will get through this and be better and wiser, but man am I dreading the start of spring semester. The comforting part is that I know I’m not alone in my journey.

As I have grown my Instagram page over the past year, I came across a couple accounts with other chronic illness warriors who were also in various stages of their PA school journey. Seeing someone like me represented in the healthcare community is one of the most comforting things to come out of publicly sharing my health journey. I reached out to each person individually and we started a private chat, which I appropriately named “suPAhumans,” and it gives me fuel to keep advocating. Shoutout to my suPAhumans – you rock.

Another wonderful group that has been on my mind a lot recently is my invisible illness support group. I joined this group back in May and have virtually met some of the kindest humans this planet has to offer. In December, life dealt a shocking blow when a member of our group, Jean, suddenly passed away. Despite having only known Jean for a little over 6 months, she became intimately intertwined in my health journey. Strangely, during one of our last meetings, we were discussing grief and Jean said that grief is one of the deepest ways to express your love for someone that you have lost. Having lost friends in the past, this struck a cord in me. I always thought of grief as a dulled sensation, where things become grey and fuzzy as you experience the hole that someone you loved has left in this world. I now view grief as a warm, yellow feeling of deep love and admiration that surrounds you in the absence of a soul that typically fills you with that feeling. Jean is the person who stood up for me when I was unhappy with a therapist I was seeing. She empowered me to find my current therapist, which has been life-changing to say the least. My favorite part of Jean was the way she listened; with her head tilted, she took in what everyone had to say, absorbing our most private emotions. Then, in an effortless fashion, Jean would dose us with words of wisdom that seemed to wrap the whole group up in empowering energy. She would leave me feeling invigorated and deserving. For those who knew Jean, you know what I am talking about. Ironically, my words don’t do her justice, but if Jean were here, her words would.

In an effort to honor Jean, I worked hard in therapy to process my emotions and take ownership of my grief as the purest form of expressing my love for this beautiful soul that has left this world too soon. My therapist asked me, “What do you need when you’re sad?” I was shocked to learn I didn’t really know the answer. How have I reached the age of 31 without knowing this basic need? I know how to support others who are experiencing grief, but I don’t think I know how to support myself. I don’t quite have the answer to this yet, but I know Jean would want me to discover it in her honor.

If you’re reading this, I love you. I probably should say that more often.

“Grief is the last act of love we have to give to those we loved. Where there is deep grief, there was great love.”

#chronicillness #autoinflammatorydisease #autoinflammatoryawareness #behcet's #behcet's disease #grief #griefsupport #pa school #health journey #autoimmune #periodicfeversyndrome #pastudent

[healthishealth]

I made it outside yesterday (recovery day 6). I'm so thankful that I have a balcony to sit on and feel the fresh air and warmth of the sun. Unfortunately, my apt is not accessible and has tons of stairs, so I've been trapped here since my surgery on Friday.

I had an L4/L5 and L5/S1 laminotomy. When the surgeon opened me up, he confirmed that I actually have a duplicate nerve root at L5/S1, not a cyst. He took a picture (those of you who know me should know that made me really happy) and he's going to show me how much bigger that nerve root is since it has two nerves wrapped in one sheath! He also confirmed his suspicion that my nerve roots exit the spinal canal much higher than the average person. This, he said, would explain why my pain did not match what he was seeing on my images - a validating statement that reminded me I wasn't making this all up in my head.

For years (8 to be exact), I have suffered from sciatica. It was really bad at first and then I don't know if I "got used to it" or perhaps it got slightly more tolerable, but it was only this past year that it became unbearable again. Every time I would see a doctor, they would look at my imaging and tell me that the minimal disc bulges I had on those two levels should not be causing me so much pain. In fact, one of my doctors suggested it could be psychosomatic and asked if I knew about CBT (I work in mental health, so this was a huge 🙄 for me).

Nevertheless, I refused to give up, even though my doctors were giving up on me. I finally found a pain management doctor who believed me and also wasn't afraid to prescribe pain medicine while I sought answers. After exhausting my options with him (i.e., steroid injections, exercises, medications, etc.), he referred me to a neurosurgeon. I'm too exhausted to go into detail about the horrific experience I had with this doctor, but I will one day. She eventually suggested I have a fusion and disc replacement (without ever seeing me in person except for 2 visits in 2016). I felt this was pretty aggressive for someone my age, so my pain management doctor referred me to see someone else.

For the first time, this new surgeon listened to what I was saying and actually believed that I could be in a ton of pain despite my images only showing "minimal disc bulging" at 2 levels. He showed me my scans and actually walked me through his thought process. He pointed out the "cyst" and said he thinks it could be a duplicate nerve root. He also drew pictures for me, explaining how nerve roots normally exit the spine and how mine seem to be exiting much higher up. He pointed to some bone erosion he noticed on the right side and suggested I get new imaging done since the last one wasn't very clear. Most importantly, he was straightforward with me and said this surgery might not fix my pain, but at the very least, we would eliminate one of the possible sources for my pain. The worst case scenario (barring any rare complications from surgery) would be going through surgery and not having my pain resolved. He also referred me to see his colleague for one more opinion, since his opinion conflicted with the first surgeon I "saw."

Fast forward to my surgery day - I'm pretty nervous, but once I meet my anesthesiologist, I'm much more at ease. He's a huge USC fan and alumni. The doctorate student (SRNA) working with him that day was also at USC, so we all bonded over that and I felt reassured that they would take good care of me. Both of them kept telling me what a great decision I made and that the extra year of PA school at USC's program is so worth it (woo!). Next, my surgeon came and marked "YES" on the right side of my back and they told me I was ready to go. I kissed Alex and my mom and the SRNA gave me a dose of propofol as I was being wheeled away.

Things happen at double speed once you enter the OR. EKG stickers get placed on me as an oxygen mask is strapped over my face. My gown is hooked up to a hot air pump (my favorite) and the anesthesiologist tells me he's going to start giving me the sleepy stuff. My left arm burns like my veins are on fire. I'm reassured this will pass quickly and it does. Someone stands over me and switches my oxygen mask and I drift off into anesthesia land.

My eyes peel open and they feel watery. Am I crying? I am. I hear myself gasping for air and saying, "I can't breathe!" Looking back on this, I think they probably had just pulled the intubation tube out, so I probably woke up during that and got scared that I wasn't breathing on my own. This has never happened to me before (or if it has, I don't remember). I then burst into tears again because the sciatica I had going into surgery was gone.

I'm still off of my medication for my autoinflammatory disease due to the risk of infection if I'm immunocompromised in any way. My drenching night sweats are back and I'm not feeling that great, so hopefully I can go back on medication after my post-op appointment on 3/17. In the meantime, I'll just be here...resting...reminding myself I'm not a burden...allowing myself to ask for help when I need it. Special shout-out to my mom for flying out last weekend and taking care of me and my MVP, Alex, for being the actual best human in the world and loving me unconditionally.

It's been a long week. I've made a lot of progress, but I've definitely had setbacks (both mentally and physically). My sciatica came back a bit a few days after surgery, but has not been as painful as before. I'm hoping my nerves just need some time to settle down and realize they're not being compressed anymore. I do worry that 8 years was too long and that permanent nerve damage was done, but I'm just letting that thought hang out and I'm trying not to engage with it too much.

#autoinflammatorydisease #spinalsurgery #laminotomy #chronicillness #mentalhealth #undiagnosed #medicalmystery #periodicfeversyndrome #behcet's disease #surgery #invisible illness

[healthishealth]

As many of you know, I’ve decided to be an open book about having a chronic illness. In the age of social media, we often only post snippets of the best versions of ourselves. Whether it’s mental illness, physical illness, or anything that portrays a less than ideal moment, it is so important for us all to remember that everyone is fighting their own battle. In my eyes, there is no hierarchy of importance in these struggles. For me, my chronic illness sometimes leads people to believe that their struggles are “not as bad” as being sick frequently. This is the furthest thing from the truth. I want to hear about your less than perfect moments, whether it’s spilling coffee on your favorite shirt or having an argument with a loved one, your obstacles are just as valid as mine. So, here's a snippet of my less than perfect day.

#reallife #chronicillness #autoinflammatorydisease #autoinflammatoryawareness #periodicfeversyndrome #raredisease #rareillness #rarediseaseawareness #healthishealth

[healthishealth]

I wish you could see me on a good day.

I wish you could see how full of energy I can be; how willing I am to get things done, even when I’m tired.

I wish I could be a regular tired; the kind that is almost welcomed after a successful day of living life. I miss that kind of tired that feels like you’ve earned a good night of rest – the kind of tired that doesn’t come with guilt.

I wish I could explain what it feels like to be in pain every day. I think about this a lot. Yesterday, I broke into tears because I heard myself say, “I would never want someone to know what it’s like to be me.” It’s true. I wouldn’t wish this affliction on my worst enemy. How then, can people with chronic illness expect others to be able to understand us? It’s such a catch-22 because we so badly wish that people knew what we were going through, yet it seems virtually impossible unless they have actually experienced something similar.

Explaining chronic illness to others feels like trying to pass someone a handful of sand. No matter how careful you are, no matter how hard you grasp the sand, it slips through your fingers and falls to the ground. It feels impossible to fully explain your illness. Certain aspects of your life are not going to be understood by others. Some sand will always slip through the cracks of your fingers.  

That’s okay! Who truly understands someone else’s life anyway? Wouldn’t that be boring? We all have so much to learn from each other and always will. So, my friends, what is it like to be me? I don’t know. You’ll just have to ask.

#wishlist #chronicillness #chronically ill #spoonie #ask me anything #raredisease #rareillness #autoinflammatory #periodicfeversyndrome #periodicfever #medical mystery

[healthishealth]

Life isn't always pretty; sometimes it's puffy and red and exhausted. These past couple weeks, I caught myself trying to find "happy" pictures to update my Instagram with. Then I remembered how important it is to share all types of photos. Today is day 16 in the hospital. I'm finally nearing the end of my flare-up and starting to feel more like myself. This flare-up consisted of hyperpyrexia (fever of 105ºF), hallucinations, lymphadenopathy, lymph node biopsy, medication trials, pain, pain and more pain. More diagnoses were eliminated, but even more questions remain. I will most likely be seen by a top doc at the NIH, which hopefully will bring more answers to light. I have to say, though, how incredibly lucky I am. I have access to top notch healthcare, I have the support of friends and family, and I have an entire team of doctors across the country still rooting for me and not giving up. Hopefully, I'll be out of here soon. Thank you to everyone who has reached out, come to visit, and just been overall amazing humans.

Xoxo, hospital girl. ❤️

#chronicillness #autoinflammatorydisease #autoinflammatoryawareness #periodicfeversyndrome #rarediseaseawareness #raredisease #rareillness #feverofunknownorigin #medicalmystery #spoonie #hospital #hospitallife

[healthishealth]

Day 15🔥: The other day, my cat, Mowgli, made me laugh and despite the pain that accompanied the laughter, I remembered how important it was to smile. Working in mental health has reinforced how important it is to “fake it til you make it.” That’s not to say that you should pretend to be happy or lie to other people about being happy, but that you should still do things that used to make you happy, even if you don’t feel like it. One of the most important lessons I learned was from my mother when I was recovering from brain surgery 7 years ago. I was absolutely miserable and couldn’t see myself ever getting through recovery. One morning, she walked into my room, pulled the shades up, and said, “Time to get up. Which two friends would you like to bring to the comedy show tonight?” Of course, I stared at her like she was a crazy person because I looked like Frankenstein’s monster with stitches going from my neck up to my partially shaved head and felt like absolute garbage. My mom then gave me two choices: be miserable and in pain alone in my room or be miserable and in pain with my friends at a comedy show. That night, I laughed with my 2 close friends despite the pain and went to bed a happier girl. **TLDR: do things that make you happy, even if you don’t feel like it in the moment.

#healthishealth #chronicillness #autoinflammatorydisease #autoinflammatoryawareness #periodicfeversyndrome #raredisease #rareillness #rarediseaseawareness #laughteristhebestmedicine

[healthishealth]

Day 11🔥: Happy Friday! Even though all my days seem to blend together, I still think Fridays deserve special recognition. Although we spend as much time as possible together, I still miss Alex every time he leaves for work. So, Friday means I’ll get to see more of him over the weekend! It also means that I am getting closer to having some answers about my illness. For those who like to stay updated, I have a bone marrow biopsy in a couple weeks and my genetic test results should be back in 2-3 weeks (hopefully). In the meantime, I’ve been setting one reasonable goal for each day. Today my goal is to shower! 🚿 It might sound small and silly to even have it be your goal, but when you are on your 11th day of fever and absolutely exhausted, self-care and ADLs (activities of daily living) often fall to the wayside. It’s important to keep up with these because it really does make you feel better. Once you accomplish your goal for the day, at least for me, I feel motivated to do just a little bit more - just to prove to myself that I can. Even if you aren’t struggling with a chronic illness, try setting one small goal for the day (preferably something you can do earlier in the day). Once you complete that goal, you’ll be surprised how it will motivate you to continue accomplishing tasks the rest of the day. Your goal can even be as small as making the bed! Thanks for all the love and support you’ve shown me. I truly am a lucky girl. ❤️

#healthishealth #chronicillness #autoinflammatorydisease #autoinflammatoryawareness #periodicfeversyndrome #raredisease #rareillness #rarediseaseawareness #motivation #positivethinking #perspective #perspectiveshift #goalsetting

[healthishealth]

Day 9 🔥: During a really bad flare-up, sometimes it’s easy for my mind to trick me into wondering if I’ll ever come out of it. It’s really important to remind myself that I DO have good days (great days, even!) and I’m lucky because I get to appreciate those days even more than the average person. This photo was taken in Belgium, just a few days after one of my flare-ups, which landed me in the hospital while in Lisbon. I wasn’t feeling 100%, but still managed to have a fantastic time at Alex’s family reunion! 😎

#healthishealth #chronicillness #autoinflammatorydisease #autoinflammatoryawareness #periodicfeversyndrome #raredisease #rareillness #rarediseaseawareness #motivation #positivethinking #perspective #perspectiveshift

[healthishealth]

Fever - 103.6 ✔️ Ice pack ✔️ Thankful for…the awesome jokes you guys are about to tell me to distract me and hopefully prevent me from exploding into a ball of fire. 🔥

#healthishealth #laughteristhebestmedicine #chronicillness #autoinflammatorydisease #autoinflammatoryawareness #periodicfeversyndrome #raredisease #rareillness #rarediseaseawareness

[healthishealth]

Day 13🔥: chronic illness affects everyone in its path. Not only is the patient affected, but so are their family and friends. Last night was tough for us. I ended up in my home away from home (the ER) again with what they think is pleurisy. This guy, my *fiancé,* 😍 deserves more than an award. He is my caretaker, my cane when I can’t walk well, my 24/7 shuttle to doctor appointments and hospital visits, my call light when I need the nurse, my medicine reminder, and much, much more. Most importantly, he is my best friend and soon-to-be husband, whom I needn’t think twice about whether he will be there in sickness and in health. I am so incredibly grateful to have him in my life. So, if you ever do encounter someone who opens up about their chronic illness (or any rough patch he or she may be going through), don’t just ask how the patient is doing. I am merely one small piece in the puzzle and wouldn’t be complete without all of my family and friends who have been supporting me throughout this crazy journey. Love you all so, so much. 💜

#realtalk #chronicillness #autoinflammatorydisease #autoinflammatoryawareness #periodicfeversyndrome #raredisease #rareillness #rarediseaseawareness #fiancé #bestfriend #supportsystem #healthishealth