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Chronic Pains Chronic Gains Chronically Claire

Raising awareness for invisible illness, pain, and disabilities

08/10/2023

Israel is a global leader in medical technology and innovation. One of the most important aspects of this is the development of generic medicine, which promotes access to care by reducing medication prices. Israeli scientists are also trailblazing stem cell research. They were able to 3D print a human heart from stem cells. Can you imagine if this technology could be used for humans? Thousands of people die every year waiting for organs. One of the most exciting developments in Israel is that they have developed a molecule that cured Alzheimer’s in mouse models.

Every day we use Israeli technology from the chip in our phone to cherry tomatoes to many of the medications we take. Right now, Hamas terrorists are senselessly murdering, kidnapping, and holding hostage innocent Israeli civilians. Hamas is an internationally recognized terrorist organization. Supporting them is antisemitism as their manifesto declares their desire to kill every Jew on Earth. The Palestinian plight is very real and I don’t agree with some of the policies of the Israeli government. However death of civilians on either side is tragic.

Comments that I find offensive will be deleted.

23/09/2023

Learning to live with the effects of many concussions, especially when none healed before the next, has been a huge challenge and in ways a blessing. The neuro-metabolic cascade that occurs at time of injury can be devastating especially if you continue to hit your head. Brain injuries can feel so isolating. One of the most difficult parts of my journey with TBIs has been overcoming feeling like a monster. For so long I felt completely apathetic. I had very little compassion. I felt people had to deserve my compassion. The more people would pull away (as they should I was truly awful for some time) the more intense the apathy became. Kindness and love from others who understood what I was going through was so healing. Now I am in a position to try to give back. While living with daily PPCS isn’t easy, I have learned to live with my symptoms and manage them better. While I know I’ll never be symptom free, I am so much better than I was 5 years ago let alone 10-15 years. It’s overwhelming to think that I probably have a good 60-70 years of life and that I’ll be symptomatic for all that time. So I don’t look at life that way. Instead it’s about managing day to day.

September is concussion awareness month. Please don’t suffer alone. There are resources and organizations who can help you! I know what it’s like to feel overwhelmed and hopeless when it comes to concussions. Please reach out if you’re struggling.

Here are some concussions facts to keep in mind:
1. Grading concussions is outdated. Severity is determined by recovery time.
2. "Just a concussion" is an ignorant statement as it doesn’t appreciate that concussions are a traumatic brain injury.
3. A well managed concussion is the best form of prevention.
4.

13/09/2023

World Sepsis Day 2023

Severe sepsis and septic shock is in the top 3 most terrifying things that I’ve been through (which is really saying something) but I really wasn’t to spread awareness that sepsis can happen to anyone. I never believed those cultures would grow. I really though I’d get them drawn outpatient the next day when a nurse saw me when I was getting my routine tpn labs told me I needed to go to the emergency department immediately. Between her and two friends pushing me to go, I reluctantly agreed and went. I owe my life to that nurse and and from the bottom of my heart thank you.

My sepsis started with a low fever the night before. The next day I was at 99.8 which is a solid fever for me. When I got the the ED an hour later I was at 101. The next day things things looked like the might be better but then that night my liver and kidneys tanked and I had a 103 fever. Nurses worked all night to keep me alive to get the port removed the next morning and then move me to icu. I was told by ID and my nurses and hospitalist that I was circling the drain. Sepsis can kill and it can kill fast.

Sepsis can occur in anyone not just elderly, immunocompromised folks, or people with central lines. UTIs, skin, and respiratory tract infections are the most common to cause sepsis. Please be safe rather than sorry… if you suspect sepsis get immediate medical attention!

04/08/2023

Biologics… we love them and hate them but mostly love them because they’re lifesaving! Finding the right biologic can be so hard because everyone’s body responds so differently. For example, 70% of people who can tolerate a TNF-a inhibitor see significant improvement. However, TNF-a inhibitors primarily Remicade can cause serious allergic reactions up to 10 days after the infusion. That is what happened to me with Remicade. I was then on weekly Humira injections but my condition deteriorated while on it and that led to me developing SMAS. Now I’m on Rinvoq and it has definitely helped some things but we’re not sure how much of it I’m absorbing which can be an issue for Crohn’s patients especially with Crohn’s in the small intestine.

There’s so much that’s unknown about biologics and small molecule meds and so that means we’re learning as we go and adjusting as our knowledge evolves. Something that’s so interesting is that Xeljanz is ineffective in Crohn’s disease but Rinvoq is yet Xeljanz covers all JAK pathways while Rinvoq covers JAK1, JAK2, and TYK2. Xeljanz is highly effective for many UC patients. It’s scary that there are so few options and that the options available have so many risks.

To keep in mind:
💊You didn’t fail a medication, the medication failed you!

💊Having a decent relative safety profile doesn’t mean the med is safe

💊Safety profile and side effects are not related

It is my hope that more effective treatments and safer treatments will be developed. Crohn’s in the upper GI tract is notoriously hard to treat and many of these meds are much less effective if effective at all in the upper GI tract.

For now, I’m thankful that we have any options but I remain hopeful that better treatments are coming.

30/07/2023

I wanted to reintroduce myself as I’ve been sharing my story here for nearly 7 years and my account has grown and evolved over those 7 years.

My name is Claire, I’m 24, and I recently graduated from the University of Pittsburgh with a Bachelor’s of Science. I majored in microbiology and did double minors in chemistry and applied statistics. I was a serious soccer player for 13 years but unfortunately I was medically retired from soccer in 2015 due to concussions. I had to take medical leave from school during what should have been my junior year of high school. We suspect that my brain injuries triggered autoimmunity and inflammation. I live with post traumatic migraine, Crohn’s, hypocomplementeric urticarial vasculitis, MCTD, and occipital neuralgia. During my first year of college I was infected with EBV and had a really bad case of mono. We suspect this triggered a primary immunodeficiency as well.

My health has furthered my love for science and has sparked so many research questions. I’m interested in the connection between concussions and autoimmunity as well as the role of mast cells in autoimmune diseases. My dream job would be working in biopharma developing new medications for autoimmune diseases. I could go on a full nerdy rant here about all the questions I have.

Feel free to ask me anything and as always, my DMs are always open. I hope I can make this account as helpful as possible for you all!

02/07/2023

I struggle with the word "disabled". I don’t feel like I’m disabled but I also know I’m not able-bodied. The truth is that disability is defined so differently depending on context. To receive social security disability insurance, disability means that you cannot do ANY job whatsoever. For insurance purposes disability means you are unable to work a job as well paying as the job you hav previously. In a medical context and employment context, disability is any chronic condition. I grew up hearing legal definitions. I have a lot of internalized ableism (something I’m really trying to work on letting go of). Disabled/disability is in NO WAY a dirty word, but it feels incorrect when I use it because I have been able to achieve my goals and then more academically, athletically, and personally despite medically qualifying as disabled. Now those achievements have all been impacted by my chronic illnesses and likely I could have achieved more in these categories, especially athletics, had I been healthy. Identity first language also makes me feel a little weird. Calling myself a disabled person makes me feel like my chronic conditions define me. I live with multiple chronic illnesses but I am so much more than those. I realize this line of thinking may not be popular and please know my intentions here aren’t to offend anyone. I just don’t think I’m the only one who’s grappling with terms and identity. In no way do I see myself as able bodied, but I also don’t see myself as disabled.

29/06/2023

One of the complications I’ve had from having such a delayed Crohn’s diagnosis is colonic inertia, a motility disorder of the colon in which it resists movement. For me, the right side of my colon is paralyzed. This results in really painful impactions, functional obstructions/ileus (different from what I typically refer to as an obstruction as those are physical but both are hella painful!), and in some cases urinary symptoms like urinary retention. The motility issues I have and some of the issues I see others with IBD struggle with due to prolonged inflammation usually due to delayed diagnosis is why I try to raise awareness about atypical presentations and try to give others the terminology to be in a position to best advocate for themselves because any condition when left untreated can have serious consequences. I also hope that as more awareness is raised, healthcare providers will realize more and more that being a woman/girl/femme-presenting/assigned female at birth doesn’t mean we are hysterical or exaggerating. I obviously can’t change what’s happened and there’s no point in dwelling too much on this but I can’t help but think that had I been a guy, my diagnosis would have come YEARS earlier than it did. I was young, thin, and female (and also a distance runner) so the first place and only place many doctors brains would go was e*ting d*sorder. This both further stigmatizes a class of very serious illnesses that are life threatening and invalidates the patient in front of them. Autoimmune diseases occur more often in women/girls/people assigned female at birth which is something that doctors tend to ignore and when we have secondary issues from autoimmune disorders maybe the occurrence would be lower if we were believed sooner. Sending a little extra strength to everyone who’s struggling with secondary issues due to delayed diagnosis.

08/06/2023

JAK inhibitors are a relatively new type of medicine. They are not biologics like Remicade, Humira, Stelara, Entyvio, etc. and are instead small molecules. The small molecules target the JAK signal transducer which then blocks the JAK-STAT pathway. JAK inhibitors like TNFa inhibitors have some scary potential side effects and each patient must weigh risks vs benefits when deciding to proceed with any treatment option. JAK inhibitors were first used in veterinary medicine and because they were so effective in animals, they were studied to be used in humans. The JAK-STAT pathway is responsible for transcribing cytokine genes. So by blocking this pathway, the goal is to prevent these cytokines from being made. JAK inhibitors have the ability to inhibit many different cytokines instead of just one or two. We are still learning so much about JAK inhibitors due to them being relatively new and therefore there isn’t long-term data.

I am going to be starting Rinvoq, a JAK inhibitor within the next few days. I’m trying to be cautiously optimistic about this. If I can absorb it, it should work. Rinvoq is absorbed in the small intestine and right side of the colon. The right side of my colon is the portion that is most affected by my colonic inertia which was brought on by having so much inflammation for so long go untreated. We’re hopeful that the Rinvoq could work for that as well. Many mast cell diseases are being treated with tyrosine kinase inhibitors (eg. Imatinib) but the JAK-STAT pathway covers the TYK pathways so this could be extremely effective for me. There are some concerns about absorption but I’m trying not to focus on that and instead focus on all the ways that this could help. I truly believe that mindset is so important for treatment success. Obviously it’s just one portion of the puzzle but it’s important nonetheless.

I would love to know what other people’s experiences have been with JAK inhibitors. Also, feel free to ask any questions in the comments!

19/05/2023

A common question I’m asked is why it took so long for me to get diagnosed with Crohn’s. My presentation is VERY atypical and quite honestly I don’t really know anyone who presents similarly. It’s frustrating to envy people who have a more classic presentation because IBD sucks no matter what. My Crohn’s is very severe higher up in my GI tract meaning my stomach and small intestine which leads to so many of the complications I’ve had and also presented diagnostic and treatment challenges. My colon is also very inflamed but that’s to be expected. Nutrients are absorbed in the small intestine and since mine struggles to do that, I’ve had extreme malnutrition (which led me to develop SMAS) and I have some of the worst kidney stones my Crohns GI has seen. Research shows that mast cells likely play a role in many autoimmune diseases including IBD and my case is a prime example. My anaphylaxis issues are worse when my Crohn’s is really bad. This is a phenomenon that’s documented but is not really seen clinically but I’m special I guess. Developing food allergies without any positive IgE results in my bloodwork was the first sign that there was a problem but that was 2009… it wouldn’t be until 2018 when my allergist/immunologist suspected I could have an atypical Crohn’s presentation. She advocated for me but so many doctors wouldn’t listen to her. I was finally diagnosed in July 2020. Because my case is so atypical and complex, I have had to do so much of my own research and honestly I’m grateful for that because I’ve learned so much from digging through medical journals. I’m grateful every day for the GI who diagnosed me, my current Crohn’s GI, my amazing surgeon, and of course all of the amazing nurses that have taken care of me. Right now I’m feeling defeated but I still have hope my team will figure out a treatment plan. Unfortunately treating upper GI Crohn’s is MUCH harder than Crohn’s in the ileum and colon. Swipe to learn more!

07/05/2023

Happy (or not so happy) vasculitis awareness month! I am awaiting a skin biopsy to confirm HUV but being on heavy duty immunosuppressants is complicating that a bit. Even if we can’t confirm this diagnosis, it’s still important to raise awareness about all types of vasculitis as all vasculitis types are rare. Hypocomplementeric urticarial vasculitis (HUV) is a systemic vasculitis that impacts small blood vessels and usually coincides with other autoimmune diseases. HUV symptoms can seem very non-specific and is usually misdiagnosed as SLE at first because symptoms overlap so much and present very similarly. SLE also is more common than HUV. All forms of vasculitis are serious and treatment options can leave a lot to be desired. I’m hoping as we learn more about vasculitis and inflammatory pathways, we will have better medications for ALL autoimmune diseases not just vasculitis.

When my rheumatologist brought this up, it honestly made so much sense and answered so many questions. I’m hoping that this will give me more treatment options so I can get my Crohn’s disease under control as well.

Feel free to share experiences with vasculitis or any questions in the comments!

30/04/2023

Bachelor’s of Science in microbiology with minors in chemistry and applied statistics ✅

It’s been a long road and the past 5 years have not been easy but they’ve been worth it. I’m so excited to see what’s next for me after some much needed rest. I did not have the energy to sit through a long commencement ceremony today but I’m glad I was able to attend some of the graduation festivities yesterday.

I entered college with the intent to be a neuroscience major. One of the best piece of advice I got from a doctor I worked with in high school was not to be afraid of left turns. When I was in a research lab sophomore year, I decided that I was much more interested in microbiology. While this wasn’t the craziest left turn, it was unexpected for me.

Each semester has consisted of at least one hospitalization which poses many challenges, especially pre 2020 when nobody every thought to record lectures. However, life isn’t always smooth sailing and I learned how to problem solve and how to work with authority figures to compromise and find a solution. You’re never going to get exactly what you want and being able to negotiate and compromise is a hugely important life skill.

While having a chronic illness can make planning hard, having a planner and writing in everything is so important for me. My life is held together by excel spreadsheets. Finding strategies to hold yourself accountable is also an important life skill. My meticulous planning has really helped to ease anxiety around forgetting to do something.

As a student leader, there were many times I a had to interact with administrators or comment on certain things that the administration did. While many times I did not particularly like someone, I knew that it was important to be able to work with them to accomplish my goals. There will always be people who you don’t necessarily see eye to eye with but have to work with. I found that giving a very politic answer was best in many situations. There is hierarchy in admin as well.

Quite honestly, college is about learning how to function in the world as an adult. I’m always happy to answer any questions about college/university life and academics!

22/04/2023

Finals week is approaching and I’m grateful that I have completed all my assignments. However in past years, this is when my health would go haywire. Last spring I spent finals week in ICU due to recurring anaphylaxis requiring an epi drip at one point. I asked my doctor if this was all stress and she said no but stress lowers the threshold for flares to happen. And given my history, she’s 100% spot on. I have medical horror stories from finals week every single semester. Managing stress at this time is of the upmost importance. Seeing friends and trying to get outside are hugely beneficial for me.

Share your stress management tips in the comments!

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My Concussion Journey

I created this page because I wanted to share my concussion recovery. The good, the bad, the ugly, the pretty. It’s all here and I’m an open book. I’ve been an athlete my whole life and now I have a new passion which is advocacy. My story can be found through these pictures of an essay I wrote for Side Line Therapy. I have also been featured at www.concussionfoundation.org and various other sites. Please do not hesitate to reach out to me!