Chronic Illness Warriors: Supporting Each Other Through Pain

One morning I went to take the stairs up three flights to my locker at work , like I usually did , when suddenly I had a sharp burning pain shooting down my entire knee , causing me to limp the rest of the way . Something just didn't feel right , but I was not sure why at the time and , honestly , i checked it up to overdoing it at the gym .

Gradually it worsened over time and more joints began to follow the trend . My doctor he sent me in to get my knee checked out . Everything came back okay . I went on my merry way , but it continued And , like I said , it didn't feel right and things changed . So gradually it worsened and more joints just kept on going . My hands were swollen .

My fingers were stiff , warm and inflamed . It hurt to try to grab anything or to grip . If we were having a meal that involved a steak knife . I always had to ask my husband for help because it hurt too much to try to grip the knife and cut my steak .

In December of 2012 , i was sent to a rheumatologist and he diagnosed me with rheumatoid arthritis And , granted , this was my second rheumatologist , because I hated the first one and this one was so much better . So I got my diagnosis . I thought , okay , this is it , i have my answers .

But I also thought my life was over too , because I really thought that meant that I was going to be like a 90-year-old woman and be crippled . And what a lot of people don't realize is that's really not how it is anymore . We can manage these diseases and still live a seemingly normal life .

In 2016 , i began having what we discovered to be allergic reactions to my biologic infusions , and in 2007 , i had an additional diagnosis palmar plantar postulosis psoriasis added to my chart , and this was caused by having an allergic reaction to TNF inhibitors .

So here we are at rheumatoid arthritis and palmar plantar postulosis psoriasis And that's such a mouthful to say all the time . It's a rare type of psoriasis , it's painful and it's awful .

Honestly , i felt overwhelmed and alone after getting both of these diagnoses , which made me passionate about answering , listening and virtually holding hands with others through some of the darkest and scariest times .

I partner with and I highlight women suffering from autoimmune diseases , rare diseases and disorders of all kinds , mental health and anxiety , and we also sprinkle in a couple of my Spoonie brothers too , because why not ? They're part of our Spoonie community too .

I strive to be the support for newly diagnosed or struggling warriors , the way I desperately needed and did not have in the beginning of my journey . For those with a question , please feel free to ask . Hi , my Spoonie sisters , i'm your host , gracefully , jen , and it's been a while .

It's been a while since I shared from just myself , and we have a lot of new listeners , and so I thought I would go back and once again do another recording sharing a little bit about me and why I got started with all this . So welcome to my Spoonie sisters . We've been around for just over a year now . All right , let's go back in time .

I'm Jen , and my story began in my early 30s with chronic pain that began in my left knee . One morning , i walked into work and I decided I was going to take the stairs of three flights to my locker , as I usually did , because to me , this is another way of getting a little bit of exercise in , and why not ? It's not far to go .

But that morning I had a sharp burning pain shooting down my entire left knee and this was causing me to limp up the stairs the rest of the way .

Something just didn't feel right , but I wasn't sure why at the time , and I talked to my doctor about it the next time I saw him And if I remember correctly , i think he had an MRI done on it or something , and they just didn't find anything , and so I just kind of pushed it back and didn't think anything of it , and I think this was back in about 2009

or 2010 . So it was a couple years later when exactly the same thing happened walking up the stairs and I was in a pain . I chalked it up to thinking I'd overdone it at the gym , just kind of assumed that Let's go with it . But gradually it worsened over time and it kept hurting And by then he started to run some blood tests .

The next time I saw the doctor And he said you know , i think there's some kind of rheumatism going on with you , but I'm not really sure what yet . So let's work on getting you into a rheumat Oh my gosh , sorry guys . See , this is what it's like to have brain fog . A rheumatologist That is the word .

He wanted to get me into a rheumatologist , but I guess I left a part out . So this was after a failed attempt at him helping me , because originally , before the blood work , he actually thought I had a sharp infection in my knee . I cannot believe . I almost forgot to tell you that .

So I was on months worth of antibiotics with nothing improving , And it was when more joints began to hurt and get inflamed and swollen and warm . That's when he sent me to the rheumatologist And it took a long time to get in . And this first one I don't feel like he took me very seriously . He wouldn't give me a straight up diagnosis .

He basically handed me three pamphlets and said here you go , i think you have one of these , read the pamphlets , but in the meantime we're going to get you on a high dose of prednisone And we're going to start you on a disease modifier . So what do I do ? I go home and , like anyone , i research .

I research what a disease modifier is , what the point of prednisone is , and honestly , it just kept getting worse . My hands and my fingers were always in pain . I couldn't even grip a knife to cut up a meal if I needed to .

My fingers barely even wanted to bend And in fact , at one point they actually had to inject my pointer finger just to get it to bend . It was awful , and after a year of failing different disease modifiers and having some bad reactions to a few of them And in fact I had a seizure Finally I just said you know what ? Enough is enough .

I want a different doctor . And so I transferred to a different dermatologist And automatically . This one was amazing and everything was so different . I was listened to , he wanted to work with me about my care , and same with his PA . His PA was phenomenal The two of them . I just felt like a miracle happened .

I finally had the help that I needed , but I continued to fail . Different drugs The methotrexate seemed to be helping , but not quite enough . So this is when they wanted to work on getting me into a biologic , and so once again , i go home and I research biologics , and that's fine .

You know , the first one didn't seem to do anything , and by then it is almost 2013 . So I was diagnosed in 2012 with rheumatoid arthritis 2013 . One after the next . They're just not working . Finally , i'm on one . It's wonderful , and I went into what felt like complete remission .

Of course , it's medical remission , right , because they're giving you medications that put you there . That's fine , i'll take it . That was the end goal , right . But something was going wrong . I kept getting sick . If I even walked near someone that sneezed , i caught something , and my next couple of blood works just kept coming back .

They didn't like my white blood count . They kept watching my white blood count and they just were not happy . And finally they said , okay , we're going to have to take you with all of this , your numbers are not getting better . And so they switched me to another one , and that is when I had the worst allergic reaction ever .

I am allergic to TNF inhibitors and I had to find it out the hard way . So in 2017 , i received an additional diagnosis of polymer planter postulosis psoriasis . Yes , that's mouthful And it's awful . It is so painful , guys , i'm telling you .

I get what looked like little dots on my skin , full of pus , full of fluid , and they burn and my hands start to itch And when they pop , it kind of feels a little better , but not at the same time , because I'm getting more And it feels very acidic , and the doctors described it as like a burn from the inside out , where , instead of touching boiling water

and burning the top layer of skin , it's actually the skin underneath that looks like it's on fire And as these top layers come off , it's almost like you're seeing the burn . It's really strange , i'm telling you . I can't do it justice by trying to explain it , but it is painful and my hands and my feet feel like onions when I'm in a flare .

We've gotten the rest of my body under control . My scalp no longer gets it , my legs don't get it anymore . Everywhere else is fine , it's just my hands and feet . So now I'm trying phototherapy , which is fabulous , and I love it . So far , all right . So , moving on , here we are . It's now 2023 .

And I'm living with rheumatoid arthritis and pulmonary plantar postulosis striasis rare type of striasis . So , honestly , i felt overwhelmed and alone during those times of being diagnosed And that is what has made me passionate about answering , listening and virtually holding hands with others through some of the darkest and scariest times .

That is why I created my Spoonie sisters , because I didn't want other people feeling the way I did And if we can at least find each other and chat about it and encourage one another . I'm all for it . So I partner with and I highlight women who are suffering from autoimmune diseases , rare diseases and disorders of all kinds , mental health and anxiety as well .

I wanna celebrate these women . I want you to learn more about them and I want you to learn more about what they're dealing with , because you just might need to find someone that you get . They get you , and maybe you're newly diagnosed and you have questions . These are people that are going to answer your questions in heartbeat .

So , like I said , i strive to be the support for newly diagnosed , struggling warriors , the way I desperately needed and did not have in the beginning of my journey .

For those with a chronic illness , our energy it fades faster . So we must be purposeful with the time allotted for each task And that's why we are Spoonies . So thank you , christine , miser and Dino for the Spoon Theory . That was such an awesome thing that she came up with with a friend when they were out to breakfast or lunch or whatever it was .

I wouldn't have even thought of that , but she's a genius and I thank her for it . So , whether you're experienced or new , and the term Spoonie applies to you . Grab your coffee or your tea and tune in , as my fellow Spoonie sisters worldwide And I share our stories and life hacks in living with chronic illness , but always remember to not forget your spoon .

So all guests are on remension in this podcast will also be listed for your benefit . So be sure to leave a review and subscribe to my Spoonie sisters as well , and you can follow us on Instagram . We're on Facebook . We even have a group on Facebook .

If you wanna join that And if you would like to be featured on my Spoonie sisters , please email me at myspooniesisters at gmailcom . We look forward to speaking and hearing from all of our sisters . All right , you take care and don't forget your spoon .