hokey pokey

hokey pokey

by Maggie ♥ 1 Comment

It’s been a while-I’ve put off writing because I was yearning for resolutions to things before I talked about them. I wouldn’t say I’ve gained resolutions with any type of finality, more just lessons in patience, acceptance, disappointment, and an understanding that everything is temporary.

At the end of July I lost feeling in half my left arm- ring and pinky fingers all the way up towards my armpit. I can’t tell you when it happened, just where I was when I noticed, the middle of a lake in Michigan, far from the comfort of home. I’m always anxious when something “new” happens with my body, a telltale sign I’m slowly losing the war with this disease. It’s advancing towards me and I’m unable to fight it off.

They sent me to physical therapy, where the therapist told me on two different occasions she could see my left hand was atrophying, but there was nothing she could do for me. I had a nerve conduction test and electromyography. It was incredibly painful, mimicking a magnet repeatedly ripping through my skin. It was so intense that several hours later I realized I had been cradling that arm all day, subconsciously trying to keep it safe. The results only showed that the problem wasn’t in my elbow, and again noticed the left hand was atrophying. Atrophy is defined as “wasting away”, and that’s exactly what it felt like. Cranberry recommended a chiropractor and I went three times a week, on top of continuing my scheduled massage and acupuncture appointments. There was a 30 day period this summer where I had over a dozen medical appointments. I had zero improvement and spent every night worrying it was going to spread. Only a matter of time until I’ve fully lost control. And then one day a few months later, I could feel my arm again. I gained about 80% of feeling back in an instant, as quickly as I had lost it. Since then, I’ve maintained between sixty to seventy-five percent feeling and have a very tender inner elbow. I don’t know if, when, or where it will happen again.

September 1st I woke up at 2 AM in the most pain I have ever felt. The pain was so unbearable that while trying to ask Cranberry for help, I actually hallucinated and thought he was my father. My knee felt as though cinder blocks were being repeatedly dropped on it, each thump taking my breath further away. He got me some NSAIDS and massaged my knee for a few minutes, it seemed to help and I told him when the medicine kicked in I would probably feel fine, it was just a bad flare. It was not a bad flare; this immeasurable pain was just revving up. I was vomiting from the pain by the time Cranberry took me to the ER that afternoon. My right leg couldn’t bear weight and I was put in a wheelchair. I spent nine hours in the ER alone, Cranberry wasn’t allowed to be with me unless I was admitted. I had x-rays, four different blood draws, an ultrasound, and had my knee aspirated. I had ruptured a six centimeter Bakers cyst. Since that initial incident three months ago, I’ve had several recurrences of the immobilization and pain, just to a lesser degree. To combat these recurring cysts, I need to diligently use ice, heat, compression, and elevation everyday. 

Last year I tested positive for HPV, which means that I needed to get a repeat pap-smear this year. At this falls appointment, I tested positive for HPV and had indications of cellular changes that required follow-up. I had a colposcopy, where they took 5 biopsies of my cervix. Many women don’t find the procedure particularly painful, but it was for me. I had bleeding and gastrointestinal issues for several days after. The results of the biopsy showed I have “precancer”. Since it is mild, they advised I wait a year and redo the test before treatment. Many women are able to clear HPV naturally with time, but my body hasn’t been able to do that because of my biologics. The medicine I need to be able to function with RA, suppresses my body to the degree that I can’t fight off infections. These medications also put you at an increased risk for cancer. I need them and they could hurt me. Another glaring reminder that RA impacts every part of my life. I’ve had three dental appointments in the last six months to help combat damage RA is doing in my mouth. It is in every part of me and it lets me know.

This was arguably longer and less peppy than I would have liked, but it doesn’t feel long. It feels very much like the abridged version, negating the anxiety, fear, embarrassment, sadness, and guilt I’ve felt everyday. I think I put off writing these updates because it’s hard to talk about and reflect on. It becomes real and feels physically heavy in my chest.

Even still, I have a lot of hope and excitement for 2024. I hope everyone is able to spend quality time doing things they love with people who fill their cup this season. Happy New Year.

Not it

Not it

by Maggie ♥ 0 Leave a Comment

I’ve spent most of the summer trying to hone in on what my potential flare triggers might be, with little success. Around my birthday I tested myself for Lyme disease. There has been growing evidence that many people with autoimmune symptoms are in fact suffering from long-term untreated Lyme disease. Contrary to popular belief, not everyone with Lyme disease gets the bullseye rash it’s known for. I paid out of pocket for the test and I was really nervous about it. I wasn’t worried about having Lyme as much as I was worried about not having RA. As much as I often wish I didn’t have RA, what would my life look like without it? In the 8 years since I’ve been diagnosed, I have done a lot of work on myself under the impression I belong to this certain community. While it’s the club no one wants to join, it’s one you’re proud to be a part of- surrounded by such kind and resilient people. I have found so much hope, friendship, and community through having this disease and I didn’t know what I would do if I suddenly didn’t fit into that picture anymore. I was keeping myself up at night worrying that I was a liar and how would I explain to people how I was wrong all these years. And then how would I explain to my doctor that they were wrong. And what would the next steps be. And wait- what if my Lyme wasn’t curable because it had been too long? What if my Lyme was curable (I should say that this is my medicate brain, so imagine how fun I am unmedicated)? I didn’t need to worry for  too long about all that, because unsurprisingly it turns out I don’t have Lyme, just the ol’ RA. I wouldn’t say it was a bummer or a blessing, it just kind of was.

A few weeks ago I decided to get an extensive (and expensive) food sensitivity test, again paying out of pocket. So many people that I connect with in various support groups have had success with elimination diets- usually a combination of gluten, dairy, or sugar. I had tried eating “gluten sensitive” and vegetarian for a while with no marked success, but was hopeful the test would enlighten me to something simple I could eliminate from my diet to ease symptoms. Cranberry and I discussed at length how the elimination diet would work and how to deal with potentially not eating some of my favorite foods ever again. I was feeling super positive and even excited getting myself to a place where I would be okay never eating Brie cheese again if it meant long-term or substantial RA relief. Fuck cheese. What we neglected to discuss was what the plan would be if the test came back negative to ALL sensitivities- 209 items to be exact. I was shocked, especially because I have always had a fairly temperamental stomach. But I guess I shouldn’t be super surprised my tummy troubles are likely just anxiety- what else is new. 

It’s also been nearly 8 months since I’ve had alcohol. I was pretty fucking certain I would lose a minimum of 77 lbs and irradiate joint pain if I ever managed to stop drinking, neither of which even remotely became a reality. I have, however, learned a lot about myself since I stopped drinking. If I were to track my pain (which I have done off and on using various methods over the years), at first glance I would say my pain has increased since I stopped drinking, which seems alarming (and wishful thinking- alcohol helps RA-sign me up!). The further away I get from alcohol, I can see that I was actually using alcohol to hide a lot of the complex physical and emotional pain of RA. When I was drinking regularly, I never let a flare stop me from meeting my friends for a drink (or 5) because after a few drinks, I would feel better, great even. And after drinking, I was more likely to agree to things I would probably be better off not doing with joint pain, like staying out late, walking a crazy distance or on rugged terrain (I say as though I own hiking boots), or more drinking. Drinking also just generally cheered me up, and I would say overall I was a very happy person when I drank. 

In 2022 I had cut back my drinking substantially, mostly because Cranberry isn’t a big drinker. He kept saying that my joints would feel better if I stopped drinking because there is a clear link between alcohol and inflammation, but when cutting back didn’t work I didn’t feel like there would be a difference if I stopped altogether. I’m also just not someone that enjoys a single drink. I am fine to not drink at all, but if I am going to drink, I’m going to have several. It’s just not fun for me otherwise. Around this same time, I was getting more involved on Reddit in the RA, autoimmune, and chronic illness space. A frequent topic in those communities is opioid use for pain management. Many chronic pain sufferers, myself included, are denied access to pain medication stronger than ibuprofen. For me personally, this is a topic of mixed emotion. I don’t want opioids to be a part of my daily pain management regimen, but there have been several episodes where my pain has been so unworldly that words can’t begin to do it justice. I have laid in bed and thought if this pain does not lessen in the next several hours I do not want to continue living. So, it’s a fine line for me between being thankful I don’t need to rely on them everyday (and knowing so many people legitimately need to), but also feeling frustrated I can’t access them in times of what I would consider a crisis. Many people in these groups who do not have access to proper pain management turn to alcohol to help tolerate their symptoms. The more involved I became, the more frequently I was seeing posts discussing drinking entire bottles of liquor daily in order to function through pain, needing to drink before work to get through the 8 hours of pain, needing to drink before having the strength to get out of bed, etc. While my relationship with alcohol was nowhere that extreme, I also understood so well why they felt this way and it did make me reevaluate my own habits. 

While not drinking hasn’t helped my joint pain, it has helped me make better decisions. When I don’t feel well, I am more likely to cancel on friends, or at least change the plans to be more flare friendly. I am infinitely better about going to bed early and getting enough sleep. I am becoming stronger about voicing my limits for activity. My anxiety has decreased substantially, as has my guilt. I go to sleep every night knowing that if I wake up in a flare, it isn’t because I was drinking and I’m really proud of that. 

These tests and trial eliminations may sound extreme to you, and I totally get that. Food sensitivity tests are controversial, with a fair amount of research pointing to them as more “popular” science than anything else. I would not recommend that to someone who has just been diagnosed or in lieu of medication. I would never try something that was genuinely dangerous or detrimental to my health (and you should always discuss these types of things with your medical team). I would recommend them to someone like myself who has been fighting this disease for close to a decade with minimal results. The way I see it is, what if one small thing really is what’s going to make the huge difference for me. Reading new research and trying new tests also helps me keep the hope alive that I can get better and sometimes you have no idea how much I really need that hope.

Purgatory

Purgatory

by Maggie ♥ 0 Leave a Comment

I’ve been thinking about my meds and medication in general a lot lately, so I think that’s where I’ll start. 

Plaquenil- I’ve been taking this everyday since my diagnosis. It was a rough beginning (understatement), but now I don’t think twice. I don’t even think I could tell you the last time I missed a dose, it is that much a part of my daily routine. Once this medication stopped making me vomit every day, it didn’t do very much for me in terms of my RA. I didn’t go into remission-the pain didn’t get better; the swelling didn’t go down. But instead of stopping it, they just added a different medication (Methotrexate) on top of it and that’s what the rheumatologists have continued doing ever since- adding and taking additional medications away but leaving Plaquenil. I’ve been told that Plaquenil is safe to take for life, and this gives me quite a bit of pause. Development of RA before the age of 65 is considered early-onset. With that information in mind, I assume that someone around the age of 65 has about 20-25 years of life left. I can stomach the idea of taking a medication for 20 years, but I started taking this medication at 22, which puts me almost halfway to that 20-year mark right now. I see a lack of longitudinal studies showing the safety or mitigated risks of taking this medication for 60+ years.  Again, a medication that did not reduce my symptoms and that I’ve just been told I should continue taking.

Amjevita- This is technically a new medication for me, it is the biosimilar of Humira. My insurance switched to Amjevita because it is cheaper for them (same price for me). I was hesitant about the switch, but it has been fine. Amjevita has actually been a less painful injection for me than Humira, which I am appreciative of. I was taking this injection every 14 days, but I felt it wearing off before the next dose, so the prescription was updated to every 10 days. I have a feeling that it will soon be upped again to every 7 days, which is the maximum allowable dose. It has generally worked well for me, aside from wearing off between doses. I am capable of giving myself the injections, but I prefer to have Cranberry give them to me. I injected myself weekly for several years when I took Methotrexate, but it was a stressful situation for me. It has beendifficult, but I am working on being okay with someone else handling a small burden of this disease for me. 

Cymbalta- I have been weaning off Cymbalta since the beginning of 2023 and this is the first week that I haven’t taken any. It has been a difficult process with a lot of withdrawal symptoms, which is why it has taken so long. I took this medication for two years and it worked so well for me. It improved my physical pain as well as some of the mental aspects of my pain, which impact I often overlook. Other than the shitty symptoms that came with starting the medication, a phenomenon I like to call sleeping beauty syndrome- where I slept 20+ hours a day for 2 weeks, and the symptoms I’m experiencing now, it is one of the best medications I’ve taken. I’m only stopping this medication because I would prefer not to take it during pregnancy and I don’t want to have rush through the withdrawal during a pregnancy. One side effect I had while taking Cymbalta was brain zaps, which I can only describe as a non painful electrocution. It feels like a shot of electricity that goes down into my arm or leg and causes the limb to jump or spasm. This can be a really uncomfortable side effect for a lot of people, but it only happened to me at night and I got really good at even sleeping through them. As I’ve been withdrawing off the medication- I am having that same jolt of electricity go down my arms or legs, but it’s not resulting in a spasm. It feels as though the energy is just going from my brain to my limbs, but has no exit. It’s a very uncomfortable feeling that has been happening at all hours of the day, and it is worse at night. I’ve also had the opposite of the sleeping beauty phenomenon, one I haven’t named, but ages you 10 years because it just keeps you up all night regardless of how tired you are.

Prednisone- hello darkness, my old friend. A little over a month ago I started having knee pain off and on. I’ve never experienced RA in my knees before, so I wasn’t sure if that’s what it was. It became more consistent two weeks ago and I decreased my cardio from walking 2 miles 3x a week, to 1 mile 2-3x a week, to try and alleviate some of the pressure. Then last Tuesday I woke up and couldn’t stand on my right leg at all. I’ve been nursing it for over a week now- a lot of rest, no cardio, modified workouts, and using a brace, but the flare spread to my hands and I finally reached out to my doctor for Prednisone over the weekend. This is my 4th or 5th round of Prednisone in the last twelve months, which isn’t great. High Prednisone use is associated with Osteoporosis, eye damage, several other long-term conditions, and increased risk of infection- not unlike most of my medication. It’s truly fascinating that so many of these medications further compromise an already compromised immune system. Usually my dose tapers, starting slow, reaching a peak of 20 mg, and then slowly tapering down, but this round is 20 mg for 7 days straight. I have a lot of side effects from Prednisone, one of which is insomnia. That coupled with the insomnia from the Cymbalta withdrawal has me sleeping from 3 AM to 7 AM every morning and then maybe a few hours in the late morning or early afternoon. That’s a really difficult cycle to get out of, and a lack of sleep is one of the biggest flare triggers for me. And then we have the sweat. So much sweat. If you told me I fast-tracked overnight to menopause, I would believe it. I sweat through my dress at work tonight, not just under my arms- everywhere, a gross girl moment, if you will. Prednisone also causes mood swings, which when paired with my menstrual cycle this week, I can only hope has been as enjoyable for everyone else as it has been for me. My dinner reservations got cancelled- felt like they broke up with me. Put a mistake in a work email- felt like I was going to be fired. It also makes me extremely nauseous, which I have to combat by taking additional medication. So many of these medications cause side effects that can only be managed with additional medication. All this to say that it’s still the fastest way to get out of the intensity of the flare. It takes the edge off just enough that I’m able to cook, work, and just kind of get by until the flare subsides.

Keep in mind these are only the drugs I’m currently taking. There are many more that I’ve taken and failed, am just not taking right now, or have been taken away from me- Klonopin specifically. All this to be able to say after 8 years I’ve still never been in remission. My disease isn’t well-controlled, and I find I’m often at the mercy of just doing what medical professionals tell me to do. What other choice do I have- I’ve made all the lifestyle changes I think I can realistically make, and tried about 20+ other changes that didn’t work. I live in an illness purgatory- a permanent state of not dying, but not getting better. And truthfully, getting worse. I vacillate between the positivity of future potential medicine and technology and the reality that it just isn’t what I’ve experienced. Each new joint impacted by this disease is a subtle reminder of the permanency and destruction.

You better work, bitch

You better work, bitch

by Maggie ♥ 0 Leave a Comment

Moral of the story is that I have been working on myself a fucking lot and it is super exhausting. That’s where I’ve been and what I’ve been up to. I’ve been learning a lot about my body and my mind, and thankfully I’ve had some fun along the way too.

I’ve been lucky enough to take two vacations so far in 2023, one with Cranberry and another with a good friend. Cranberry and I went to Las Vegas for his birthday in February, and we had a wonderful time. I was able to walk between 15,000- 20,000 steps 3 days in a row, which was shocking to both of us. I was able to nap two of the three days and while I didn’t eat my usual foods, I didn’t totally throw caution to the wind. Still, mistakes were made. For one thing, I wore several different types of shoes due to us attending a variety of events. I know that if I am going to be walking any distance, I need to wear athletic shoes. This is something that I need to better balance going forward. This was kind of a two part problem, because I didn’t bring my support braces since I had the variety of shoes. If I’m choosing fashion over comfort, I’m not going to stop halfway and wear braces with my hot pink Anthropologie flats. It’s certainly partially a pride issue, but I also know that I deserve to feel pretty and it’s alright that that sometimes comes with consequences. Finally, I didn’t bring my slides- this was just poor planning on my part. I absolutely need to wear slides or slippers if I am not wearing shoes, and it was very painful both in the moment and long-term that I went three days without them. What really sent this trip I’ve true RA cliff was that we got stuck in the airport overnight. At the time this didn’t seem like a big deal and we decided to forgo the hotel room offered in exchange for an extra $200 flight credit. It was already super late and our flight the next morning was scheduled for 5 AM. MISTAKE. MIS-TAKE. Never again. When we made it home, I slept for most of the next 24 hours. And then most of the next 48 hours after that. I knew immediately that I was going to flare. I ended up back on prednisone and increasing my Amjevita (what used to be my Humira- story for another time) from every two weeks to every ten days. My flare lasted from the end of February through the first week of April.

Having a flare after a vacation can be really discouraging, it feels like I’m not allowed to have fun. I have this thought of “Look what happens when you change your routine for three days,” and it can cause me to feel really low. Flaring is a fucked up cycle of feeling shitty about yourself for different reasons. You don’t feel well so you sleep a lot, then you can’t sleep at night because you slept all day. You don’t feel well so you don’t workout and then you don’t get stronger and aren’t meeting your goals. When I don’t feel well I have no desire to eat healthy, which isn’t good for my body or my mind. Flares makes me feel like a shitty friend and bad dog mom, because I’m not able to keep all the commitments I want to. Flares really take a hit on my mental health, and while I’ve gotten better about it over the years, I still get this panic from time to time that the flare is never going to end and I will be in this much pain, if not worse pain for the rest of my life/til the end of time/insert other ominous thoughts here.

With all these flare thoughts swirling through my brain 24/7, it can be really hard to look forward to a future trip. I was still recovering from my Vegas flare when I had to start packing for my April trip to Washington. This trip had been planned for months and was something that should have been exciting for me, but my flare made me anxious. I was in the headspace of not even wanting to go because it wasn’t going to be worth the flare. I honestly had the thought that maybe one of us would get Covid and we would have to cancel the trip- that is how bad the anxiety surrounding my flares can get. It can suck the joy out of every good part of my life if I let it.

But, I didn’t let it and we had an amazing time. I made a conscious effort to pack all of my support braces (ankles, feet, hands) and slides, stretched twice daily, took naps when I needed, brought all my vitamins, and a ton of other annoying bullshit that most people don’t have to consider when traveling. I also ate absolutely everything I wanted (mainly cheeseburgers and milkshakes) and it was delicious. I was sore and I had pain, but it was nothing I would consider flare worthy. One noteworthy thing that happened was that I did have a really bad episode of brain fog that lasted the full second half of the trip- worse than it’s ever been. Thankfully, I didn’t need to use my brain too much and coming home at the end of the fifth day felt completely different than coming home from Vegas. I knew right away it wasn’t going to be a repeat of the last 5 weeks- it was just such a weight off of me. I also can’t understate how helpful it was to travel with two people who are very in-tune with my needs and are so willing to help me. I’m very fortunate they allow me the opportunity to travel without being worried about how my RA is going to impact our time together.

After thoroughly comparing the two trips, I think that my flare might have just been something that was going to happen regardless of what I did or didn’t do in Vegas. I think the only big difference between the trips is that I had more supplies and proactive tools in Washington. I’m really intrigued by the brain fog issue and I’m wondering if it was because the food I was eating was so out of my normal routine. You might say it doesn’t really matter, but I am actually really proud of how much time I have spent recently trying to understand my body and how it reacts to certain environments. All in all, the first 4 months of 2023 can be summed up as preparing for vacation, consequences of vacation, worrying about vacation, surprisingly enjoying vacation, and thinking too hard about vacation. I know everyone is dying to travel with me after reading about how fun I am.

In other news, I’ve really been leaning in more to the mind-body connection in an attempt to help my body reach remission. It has been really difficult and has brought up a lot of feelings for me that I didn’t know I was holding on to. I have been using my Healing Through Words workbook by Rupi Kaur to process some of that and have started going back to therapy. I’m saying affirmations nightly, which is something I would have found laughable a year ago, and now look forward to every night. I’m on a consistent acupuncture and massage therapy regimen and have started to see amazing results. The only way I can describe it is that it feels as though my body is ready and able to accept the physical work and promote healing. I’ve left my last several appointments feeling euphoric, almost in an altered state of being. I have really been noticing how stress impacts my RA and with Cranberry’s help have actively been trying to stress less and spend more time in the moment. If I had to guess, I think the next few months will continue to be filled with growth. I’m happy and sad at the same time, and learning how to be at peace with the discomfort.

Let’s get physical

Let’s get physical

by Maggie ♥ 0 Leave a Comment

Exercise has been something I’ve been wanting to write about for a while, but my physical limitations can still feel raw for me at times.

The very first thing I did when I got diagnosed was go on Craigslist (those were the days) and post a wanted ad for a personal trainer with autoimmune experience. You are likely not shocked to learn this was a very bad idea- a bunch of fucking creeps wrote me back, none of which were even regular personal trainers, so that idea quickly died. Then I joined a gym (purely for weight loss purposes), but I had no idea what to do there. I would walk on the treadmill or just look around and blindly copy what other people were doing. There were no sets, reps, or routines- I basically went so that I could say I worked out. It was a waste of time and money and it also caused pretty bad flares, because I would pick the highest weight I could tolerate and just go until I physically couldn’t anymore.

If you’ve been reading for a while, you know that I tried running fairly soon after my diagnosis and that was also a no go. To be fair to running, I never stretched before or after and didn’t really have a plan, I kind of just ran around (theme?). I didn’t know I needed to!

I have a friend that I have always looked up to in terms of her fitness and workout ethic and she knew I was struggling to find something that could work for me. She suggested barre and I began going with her once a week. I absolutely loved it- it was still super difficult for me, but the pace was something I could generally keep up with. I joined a barre club and for the first time in my life I actually felt fit. I even completed a 20 classes in 30 days challenge- I couldn’t believe it. The problem was, I was in so much pain after every class. When I would get home from class I would have to take an 800 mg ibuprofen and lay on the heating pad the rest of the night. Then I started having to take the ibuprofen before and after class. I’m not sure if I thought that’s what everyone did after they worked out, or that meant it was working, or that I knew what it meant and I just didn’t want to believe it.

Barre began to really hurt me and I actually started to lose any muscle and progress I had gained from doing the classes. Slowly I went from going 4 days a week, to 3 days a week, to maybe 2 days a week. To be fair to myself, the pandemic had also started, which further complicated everything. I wasn’t able to plank anymore, I couldn’t use weights during the upper body warm-up, and any modifications the instructors gave me still weren’t modified enough. I started taking one and two month breaks completely to see if that would make a difference, but it didn’t and I finally quit after 3 years. The last year I would hardly consider myself a member.

A common theme for me was that I wasn’t listening to my body- at all. I didn’t even know how to. I would try so fucking hard that I was making myself sicker, weaker, and depressed. I felt so bad about myself that even the modifications were too difficult for me, convinced I wasn’t trying hard enough. When my last bad flare happened this past spring, I had kind of decided it was just never going to happen for me. My feet were so swollen most of my shoes didn’t even fit anymore.

When I started this blog, I decided to get an Instagram so that I could better connect with my readers and learn from others going through similar experiences. I think Meg’s Instagram was recommended to me that first day. She was a trainer that specialized in RA and joint pain, which was exactly what I was looking for 8 years ago! I was so excited, but I was nervous too- what would it mean if even this was too hard for me? We chatted for a couple days and then I met with her on Zoom and decided to join her program. It’s been over 4 months now and I am truly feeling better than ever.

I want to touch a bit on why this program works for me, why other programs didn’t, and why it matters. After this experience, I am a firm believer that personalized fitness is the way to go for anyone struggling with a condition that impacts their ability to workout, lose weight, etc. It has truly changed my perspective in such a positive way. Most importantly, Meg has RA and it enables her to relate to me and my fitness journey on a different level. When I explain a limitation to her, she understands it because she has experienced it. She is able to find an alternative for me and continues to work with me until we find something that works. She also understands chronic fatigue and the need to rest- I have always been in this mindset that fitness is based off the concept that you have to push yourself to your limit and then past it, and she has proven to me that that isn’t the case! I can make progress without killing myself and in fact I make better progress. And while we are talking about progress, this has been the hardest and biggest adjustment I’ve made. I had to learn that my progress does not look like the same progress as someone without a chronic illness and that’s okay. It was hard to accept that in two months I might go from using 1 lb to 2lb weights, or that I couldn’t start at 5-10 lb weights. It is always a frustrating experience to feel like you aren’t the same or aren’t as good as other people. But what she helped me realize is that I am improving- and that’s the whole point, right? I’ve even started to become okay with the fact that some weeks might be a no weight week, but as long as I’m still working out, I am basically a bad bitch. In all seriousness though, I’m not flaring from working out, which is amazing. Friday night I was able to walk both dogs to the park by myself and was only a little afraid of falling. When Cranberry and I went to Vegas last month, I walked between 15,000-20,000 steps a day for 3 days- I’m not sure when I’ve ever done that.

Fitness has been my favorite part of working with Meg, because it is where I’ve struggled the most for the longest, but she is also a great sounding board for nutrition. I eat a generally healthy diet, but she has really helped me with when I should eat what types of food, portion sizes, and listening to my body. She is super positive about food, which is something my internal voice struggles with. She encourages me to eat healthy, but also supports listening to your body and eating for your body. She suggested I not track food on Thanksgiving and Christmas and instead focus on spending time with my family. She’s taught me that I have choices when it comes to food and that it isn’t an all or nothing experience- I ate what I wanted in Vegas, but still made good decisions about portion sizes, prioritizing protein, and counting my steps even though I wasn’t doing my assigned workouts. I knew I loved her when she liked a picture I posted of some vegan Valentine’s Day donuts- she’s a real person who likes donuts too!

She’s also created a community within her clients by incorporating us into a group chat and having twice monthly video calls. While I know a few people with RA, I didn’t actively interact with people my age who have RA until this group. It’s been beneficial in the sense that I hear what medications, alternative treatments, and struggles other women are dealing with. It has also been super validating, I’ve had so many lightbulb moments of “oh! I’m not the only one that happens to!” They also inspire me to keep trying and keep showing up for myself so that I can be the best version of myself for me and for everyone in my life that I care about.

It has been a long road for me, and I know it will continue to be a long road- but I so value anytime I can find something that works and that makes me happy. I’m learning to be grateful for all my body is able to do for me, despite my limitations.

If you are interested in learning more about Meg and her program- visit her Instagram! Megzzfitness

howdy, partner

howdy, partner

by Maggie ♥ 0 Leave a Comment

Hello and happy 2023! I woke up today and only one of my fingers hurt, so I can tell you it’s going to be a good fucking day. I am so excited to announce that my workshop tickets with Remedy Massage are now live and ready for purchase! Ahri (owner of Remedy Massage and general bad ass human being) and I have been talking about creating this workshop for several months and I can’ believe it’s actually happening. Last year, Cranberry and I attended Ahri’s Partner Massage workshop and I absolutely loved it. She helped me find my voice and be able to communicate more effectively with Cranberry about how much pressure I can handle, what feels good, etc. I also learned about how to massage him while protecting my joints, which was something I had never considered before. After I started this blog, I told her I really wanted to become more involved in the chronic pain community and she said she had been feeling the same way, so over some pizza and beer this workshop was born.

What makes this workshop unique is that we are really intending to focus not just on body techniques and safety, but the communication element between the partners. As someone that is in pain constantly, it can be difficult for me to accurately communicate with my partner how I’m feeling in a way that makes since to him (fuck, it can be difficult to communicate it in a way that makes sense to me). Additionally, we want to focus on nonverbal forms of communication, which is so important in intimate partner type relationships and can help build a bridge when verbal communication isn’t enough. Please reach out to me if you have any questions and I’ve linked Ahri’s website below so you can check out all the cool shit she does.

Speaking of partners, it was Cranberry’s birthday this week and I want to take a moment to recognize him (which trust me, is not for him because his ego is already off the charts). I truly am so lucky to have him as my partner in life and I feel grateful for it almost every day- let me be clear, last night was not one of those times as he snored in my ear and didn’t want to kill our ant infestation because of his goddamn vegan morals. He helps make my life so much easier and never makes me feel like a burden or that I’m too much for him. He buttons my jeans, he tends to my toes when my feet swell, he helps me take my sports bra off, he never makes me carry the groceries, he makes me take vitamins and electrolytes, and after all that I’m pretty sure he still thinks I’m cute. Ladies, my number one dating tip- get yourself a nurse!

Finally, in the coming weeks I plan on adding a ton of stuff to my website, so please check back! I hope you are all doing well and taking care of yourself, both mentally and physically. My goal for 2023 is to say “No” more often, so we will see how that goes.

Remedy M.T.

Thirty, flirty, and crying

Thirty, flirty, and crying

by Maggie ♥ 0 Leave a Comment

I have been MIA for far too long! This time of year I tend to go into survival mode, which is why I haven’t been writing. There are so many commitments (both real and imaginary) between October and January that I feel continually run down physically and emotionally. During the holidays I really struggle to find balance between what I want to do, what others want me to do, and what I should do-leading to flares and emotional distress. Writing is one way I cope and navigate through my feelings, so I wanted to give some updates about what has been going on in my life!

I received some exciting news last month that I was accepted into graduate school, for Victim Services Management. The program will start in January and is online and part-time. I am really looking forward to continuing to pursue a field I am passionate about, but I am also stressed. One thing that RA has taken from me is the ability to feel pure excitement and joy. I really try to work on this, but when something exciting happens my brain automatically starts calculating how it is going to impact me negatively. Between May and September of this year I was in the most intense flare I have had since being diagnosed. The pain was unbearable, I felt like a Macy’s Thanksgiving Day Parade balloon with the swelling in my hands and feet, and I slept constantly. I am finally feeling like I have myself back on track, but adding another activity or commitment stands to throw everything off again. My rational brain tells me that a flare up is likely when I first start school, but that it is temporary and my body will adjust the way it’s always done before. My protective brain tells me to avoid anything that presents the possibility for pain, because of pain occurs it will never stop.

Another project I have been working on is finding ways to get more involved with the chronic pain community in the coming year. My good friend and massage therapist and I have been working together on some workshops and support groups we are excited to present in the coming months. I will post more info about them on here when they are available. I also signed up to be a volunteer for the Arthritis Foundation hotline and am looking forward to hearing back about training for that.

Three months ago I started a new medication, Humira, to treat my RA. It has generally been working well and I have less side effects than I did with Methotrexate. I still have a considerable amount of hand pain and stiffness that waxes and wanes throughout the day. During my last big flare, I began having problems with my feet and toes for the first time. The stiffness and swelling has decreased substantially, but I have developed deformities on a few toes, as well as loss of feeling. While pain and stiffness can come and go, the deformities and loss of feeling are here to stay. I’ve been perseverating on my toes quite a bit, feeling anxious that I will lose sensation in more toes that might cause mobility issues. Currently, I have to use a metatarsal pad on each foot under my socks for walking anywhere outside of the house due to pain. If there will be significant walking, I also need to wear ankle supports. While I’ve been feeling down about this, I also feel the strongest I ever have. Two months ago I started strength and nutrition training with a personal trainer who specializes in helping women with RA. This was something I had been searching for for a long time and it has truly been amazing. I’m looking forward to continuing to build strength and stability for long-term joint health.

Finally, I want to thank everyone who supported me and the Claw Hands team at this years Jingle Bell Run. We were the top fundraising team and I was the top individual contributor for our area and I couldn’t have done it without all of you. Your donations and kind words meant so much to me and I’ve really enjoyed getting to share more of my life with you all through the blog. I hope to get back into the habit of posting regularly within the next few weeks.

Word vomit

Word vomit

by Maggie ♥ 0 Leave a Comment

I want to be transparent; this post is going to discuss a topic that people are uncomfortable with. Sex. To really break it down- I’m a cute and chunky female who is chronically ill, a triple taboo when it comes to who usually does the talking about sex. I get it, it can make me uncomfortable too, and that’s exactly why I need to talk about it.

If you read my last post, you know that one of my concerns leaving my relationship with Piano was the potential (or lack there of) of finding a new partner who would want to be with someone who is chronically ill. In order to leave that relationship, I had to fully accept the idea that I might never find a new partner. When I was finally ready to begin the shitshow that online dating is, I struggled with how I was going to tell men I had RA. Part of me felt very protective over it and thought I shouldn’t have to tell anyone. I know I have a public blog with my real name and picture on it where I’ve been writing all about my life, but the idea of talking openly about my RA is honestly really new for me. Only one person at my current job even knows I have it- that is the proud, self-preservation side of me. The other side of me wanted to just rip the bandaid off and put it front and center on my profile, “Little known fact about me- Rheumatoid Arthritis”, no further information given. Take it or leave it. In reality, I ended up doing an awkward combination of both.

I wasn’t ready to start dating right away, but I did want to hookup with someone- dip my toes back in the water and prove to myself that I could. I figured the safest bet would be to pick someone I already knew, because they would know I had RA so I didn’t think anything would need to be said. I was wrong- he ended up asking me in front of our mutual friends if people with RA could give handjobs. When I tell this story, many people have been offended on my behalf, but I actually thought it was hilarious and an honest question. While clearly for selfish reasons, at least he had thought about what the limitations for someone with my condition might be. I think a better question might have been, do people with RA want to give handjobs? Does anyone want to give handjobs?

The truthful answer to his question is- it depends, and I can only speak for myself, my body, and my experiences. For me, any type of sexual activity is going to depend 25% on the current day, and 75% on the next day. If I am having a huge flare, I can’t have sex. Not only do I not want to, I can’t physically make my body move the way it needs to be enjoyable for any involved party. As far as not wanting to, I’m not interested in sex when I am in pain, but during flares I also get pretty anxious and depressed, which doesn’t exactly put me in the mood. Thankfully, due to endorphins and luck, I don’t generally experience joint pain while I’m having sex, which I know isn’t the case for everyone. As far as the following day is concerned, being chronically ill means constantly thinking ten steps ahead. What I do today might impact me tomorrow or for the next week. It isn’t smart for me to have sex the evening before a long work day or busy weekend, because I won’t have time to recover the way my body needs and not having time to recover leads to flares. While it might not be the sexiest, a little planning isn’t a big deal to me and if you want to have sex with me, it shouldn’t be a big deal to you either- I need to prioritize myself so that I can be a good partner and I would want my partner to do the same.

Long story short, after casually dating for a few months I decided I was ready to try online dating. While I didn’t out my RA in the tagline, I was surprised to see a man on Hinge who listed, “Believe it or not, I don’t have RA”. I inquired about it, but I’m sad to report that he never got back to me. If you’re out there Hinge man, I’d still like to know why people mistakenly think you have RA. Anyway, I matched with a guy that I really hit it off with and we decided to go on a date. We were discussing the pandemic and vaccines after a few drinks, and I just fully went for it and word vomited that I already had both my vaccines because I was immunocompromised. I wouldn’t say I was proud of myself for the execution, but at least I did it. His response was unexpected and along the lines of, “I have major depression and the last girl I dated left me for another guy because of it”. I didn’t really want to play the who has it worse game, but at least I wasn’t the only one carrying some baggage. That ended up turning into an unexpected one night stand, more to do with his baggage than mine. I decided I liked the alcohol induced confession method and stuck with that for a while, though I worked on trying to make it past the first date.

When I matched with Cranberry, I texted my friend that I was worried he was too athletic for me, given my RA. She wrote back that she was confident I could do everything but give handjobs, and that no one liked handjobs anyway. That was just the kind of encouragement I needed, and I made it until the second date before mentioning I was immunocompromised, after a bit of champagne courage. That didn’t appear to scare him off and about six weeks later I told him I had RA and what that meant for me and my health. Truthfully it was probably because he mentioned wanting to hike or some shit that I found incredibly unappealing at the time, but either way he was totally fine with it.

I didn’t tell people I was interested in dating that I had RA because I want attention or want them to feel sorry for me. I told them because I was worried about whether they would be interested in dating someone who is sick. On Reddit, I frequently see people with chronic conditions asking about how to date or their struggles with dating. It made me so sad to think that we see our disease as something that makes us unworthy of romantic love. If you know me personally, then you know Cranberry is a nurse. It is easy for me to think that I’m lucky because I found someone who has knowledge of the healthcare system and that’s why he is okay dating a sick person. But that’s bullshit, anyone can get sick at anytime or have a situation that dramatically changes their circumstances. Yes, I need extra help with some things in our relationship because of my RA, but this week alone Cranberry has left the fridge open all night and a burner on unattended for more than two hours. Bottom line- we all have shortcomings, and I refuse to think someone is doing me a favor by dating me when I have RA. I’m lucky to have him because he’s a good person, not because I found someone that would “tolerate” my illness.

New home, who dis?

New home, who dis?

by Maggie ♥ 0 Leave a Comment

I can’t believe it’s been nearly two weeks since my last post. I have been trying to get into some new healthy habits, one of them being writing, but it takes me a lot of time to get adjusted to a new routine or adding an additional item to my day.

Anyway, it became clear to me during Covid that I needed to leave my relationship with Piano and move out. I had had these thoughts before the Pandemic, but they had amplified significantly and become an issue of personal safety in a few too many situations for me to ignore any longer. RA was a large part of why I had stayed in the relationship as long as I had. The most obvious part of that being my insecurity that I could never find another partner who would want to be with someone who had a chronic illness. I constantly felt like my illness was a burden in my relationship with Piano and that nothing I did was ever going to be enough, even if I was literally crumpled over in pain on a bar stool waiting for him to decide he was ready to leave. I had created a narrative where he was only still with me because you look like an asshole if you leave your partner when they become sick, only now so I realize what a favor that would have been. So I had to wrap my head around the fact that maybe I would never have another serious relationship or marriage, but honestly that was easier than expected after 8 months of the pandemic with Piano.

The more difficult part of leaving were the things I didn’t like talking about- the things I needed help with in my day to day life, but kept secret from most out of embarrassment. While Piano wasn’t a model partner by any means, there were still things he did for me that aided in my ability to live a relatively normal life. He would button buttons on clothes if I asked, he would walk our bigger dog after he dragged me through the gravel one too many times, he would open jars and cans if I asked, and most importantly- he was a body in case I fell or got hurt. I have had periods of time where RA has really impacted my balance and I’ve tripped, slipped, or just straight face planted all over this earth. It was so bad that I had become afraid to take a shower or bath without him being home or knowing he was on his way home. I’m a lot less prideful than I used to be, but it’s still hard to admit I can’t bathe alone because I fear I might crack my head open and die before age 30.

So those were the big things, but of course there were smaller, more logistical things. How was I going to get my shit out of the house? I was clearly moving into an apartment, but as a woman living alone I didn’t feel safe on the first floor, so how was I going to navigate the stair situation? How would I get groceries into the apartment? Clearly I was still going to need to shower, so how the fuck was that supposed to happen? Who was going to hear my screams if I fell and couldn’t get up (this probably turned out to be the least of my worries because come to find out my downstairs neighbor was always listening- had my back for better or worse I guess)? With the help of my friends, I realized that all of these worries were manageable if not solvable, but my relationship wasn’t. If anything, my relationship was making my RA much worse due to the constant stress and fear I was in, so leaving was going to have to be worth the risk.

My mother fucking friends- I hope everyone is as lucky as I am to find friends like these in their lifetime. These fools came together like a crew you had never seen before- and no they are not for hire, they are all mine. They packed furniture, they moved furniture, they bought furniture, they built furniture. I have never been more scared in my life, but I have never felt more loved or less alone. Oh, and have I mentioned they are all women? Of course they are because- who run the world? GIRLS.

What my friends helped me realize was that it’s okay to ask for help- what a concept. I remember how badly I wanted to take a bath at my new apartment and I finally got up the courage to text my friend and say “Hey I’m taking a bath and if I don’t check in with you in 20 minutes I’m going to need you to come over and help me. Also sorry because I will be naked”. It was no big deal to her! And it was no big deal to ask my friends to help me carry things down or up the stairs because they knew I couldn’t do it and they wanted to help me. It was so hard to be that vulnerable and still is at times, but I realized that living well with a chronic illness takes a village- and I just might have the best one.

Where my drugs at?

Where my drugs at?

by Maggie ♥ 0 Leave a Comment

In addition to the chaos in my personal life, getting adequate medical care during the height of the pandemic became a real circus. While traditional in-person appointments transitioned to an online platform, there were some aspects of medicine that remained the same, one being bloodwork. While taking Methotrexate, I needed to have regular blood work done to check my inflammation levels, as well as liver function. I wanted to avoid health care facilities as much as possible; the CDC had made it pretty clear you should only be going to in-person appointments if you are on death’s doorstep, so I felt like I would be walking into a Petri dish of disease and I was already well over my exposure limit at home. I tried to put off getting blood work done, which quickly proved to be a bad plan as my doctor said she wouldn’t refill any of my medication, including the ones at don’t require blood work, without the blood tests. In retrospect, she was smart to do that because what she didn’t know, though possibly assumed, was the my alcohol consumption was through the roof. I was having themed drinking weeks with myself at home- tiki drink week, fruit infusion week, margarita week, the list goes on but the bottom line was my quarantine hobby was perfecting a craft cocktail.

I agreed to the blood work, but asked if I could do it at the same as I picked up my medication, to which she declined. Again, she clearly knew me well enough to know I would never do the blood work if there weren’t strict guidelines in place. Unfortunately, this meant I had to take many trips to both the lab and the pharmacy. Per my insurance, Methotrexate couldn’t be shipped to my home because it was a liquid, so I had to pick up the vials and needles in the pharmacy. I am normally prescribed 3 months of medication at a time, so I was perturbed one day when I only received 15 days worth of my Plaquenil. The pharmacist told me that due to the President’s pontification of using Plaquenil for Covid prevention and treatment there was a national shortage and they were only able to prescribe 15 days worth at one time. I was scared and outraged; I had taken Plaquenil almost everyday for over 4 years and honestly couldn’t imagine what would happen to my body if it was suddenly unavailable. I wasn’t sure if. My thoughts were racing- should I start rationing the pills? Should I buy them illegally from another country? Well, that won’t work because we aren’t getting overseas mail right now. Will I have to go on disability? This continued for months. My only solace was that I thought, “good luck suckers,” because I had never been more sick in my life than when I started that medication.

The bottom line is that no one should have to worry about having access to medication that either saves their life or makes it worth living, pandemic or otherwise. And it’s happening again- since the Supreme Court decision to overturn Roe v. Wade, patients in some states have been told they may lose access to their Methotrexate. Methotrexate is occasionally used to help end ectopic pregnancies, but that is not the main use of the drug. I am so fortunate to both live where I do and to have medical insurance, but that isn’t the reality for so many people suffering from autoimmune conditions. Research has proven a direct link between stress and inflammation, joint pain, and joint flares and I would say it’s pretty fucking stressful to not know if you will be able to refill your medication.