Chulita Myositis

A look into living with Polymyositis.

[chulitamyositis]

Update: 3 years later...

There I go, doing the exact thing I didn't want to do: not keep this blog up to date. I started this blog simply for the reason that I wanted to be that beacon of help for those young and newly diagnosed with Polymyositis as I never found one myself (most patients tend to be older geriatric patients). Well here I am trying to make up for it!

To start, my boyfriend and I are still together and going stronger than ever! We've both grown and encouraged one another these past years and the end result is us taking chances and progressing at work and in life and we're so happy and stable in our jobs and success for the time being.

We lost our beloved dog at the beginning of 2021 and that was a really rough time for us both. We have a shrine in the corner of our apartment equipped with gifts and paintings of her along with her ashes so we can still have her with us. We miss and talk about her daily still so we hope she's been watching us progress and thrive.

My job situation had changed in November 2021 also. After 7 years working in psychiatry, I left my job to work in clinical research and, although its a change, I'm loving it! A lot more encouragement, welcomed input, appraisal, and willingness to change things to be more efficient and work well with the team, and more bonus opportunities to incentivize the employees. This job is such a "unicorn" environment to work in and I love that they even work with me with all my doctor's appointments and infusions.

This new job leads me to my next endeavor: having to wait 3 months for my new insurance with my new job to kick in. As someone who receives loads of meds and has monthly infusions, I figured this would be tough but I could handle in. Coincidentally, right before my old insurance ran out, I had my last infusion in November 2021 and had a random allergic reaction on both days (red and raised hives, itchiness, flushing in face and chest) so my doc ended up asking for me to stop the infusions in the meantime until they could figure out what happened so I went 3 months without my IVIG.

So last month, once my insurance was active and I was ready to restart my IVIG, my doc told me that my reaction to my IVIG wasn't a single case occurrence and the med ended up getting recalled. They looked up my info and my lot was 1-digit different from the recalled lot number but they believe the batch of bad meds could have been larger than 1 lot. But this ended up getting me into using another IVIG med and its been wonderful these past 2 months. No headaches!!!! I'll get to enjoy my weekends again instead of being cooped up in a dark room suffering from headaches that border on migraines.

As of right now, my doc and I are at a stand still with my treatments as my numbers skyrocketed once the IVIG stopped and muscle weakness set in again to where I couldn't get up from a laying position and I couldn't lift much. Labs came back today that are still high but, considering that they were doubled last month, I'll take the win! I can see the muscle weakness subsiding now also so I'm taking things one day at a time again; small exercises at home using my own body weight and not pushing myself so hard that I'm asleep the rest of the day from fatigue.

Trying to see if I can get into to see a neuro muscular doc to see if they can tell me anything different as my diagnostic tests that we're redoing after 8 years are all coming back the same as before which means the various treatment combos I've done should have gotten me better numbers with my labs (they've always been OK and not great). Also, I've been on prednisone for 8 years and my teeth are feeling it as well as my bones and daily multivitamins can only do so much.

So that's all for now. The only things I have planned so far for the near future is more IVIG infusions, hopefully finding a new doc for a second opinion, and traveling as my boyfriend is finding us some great deals on traveling out of the country this summer/fall so we'll see!

See you again next month! Promise!

[chulitamyositis]

Is this real life?

Its been a few months since my last post and, as it stated, I’ve been living life. Dating my best friend turned into falling in love with my best friend, school is progressing (slowly but it’s chuggin’ along), work is stagnant, and friends and family are just as loving and supportive as ever.

It’s strange but everything seems... great? Almost too great? I don’t want to worry about things that could go wrong or “waiting for the other shoe to drop” but damn if life isn’t great right now. Next week is my birthday and I’m about to start a 6-day stay-cation and spend it doing things with my loved ones.

I probably jinxed myself but whatever. I’M HAPPY. :)

[chulitamyositis]

The comeback is always stronger than the setback.

I’m glad to announce that, since my last post, (mostly) everything is coming up roses!

I’ve pulled myself out of my mild depression thanks to my friends and family. I don’t like crediting my self growth to someone other than myself but beginning to date my best friend has helped me tremendously and I’ve never been happier.

I’m very happy with the place that I am currently but not content so I’m continuing with school and learning to tell myself that a lot of the things I stress about aren’t worth it or can be dealt with later and to let go. 

My apologies for the short post but I have to go live life and enjoy it. Stay positive!

[chulitamyositis]

Adrift

I’m in the weirdest place in my life. I feel lost yet I’m surrounded; I feel alone and yet I’m social; I feel like I’m adrift from everything and everyone and yet I’m just in arms reach from others. I feel like I’m not existing.

I have my bad days and they come on for about a day and its usually due to my illness because being chronically ill brings along its own fair share of sorrows and anxieties. My bad days usually consist of spiraling into my own dark and self-deprecating thoughts and its done once I remind myself that: these feelings are momentary, that my anxieties and sorrows can be resolved, and that I have a good support system in place. But this all feels... different. I’m a different person than I was a month ago. The sadness lingers longer and feels like I’m masking it to make it though one more day. Its taking longer to brush off these feelings and move on.

I’ve found myself constantly in my room by myself. I just always want to be by myself. I just want the day to pass and sleep. I never get enough sleep. I feel like a ghost passing through life that no one can see or care to seek out. I feel unwanted, ashamed, like a burden, stuck, fading. This isn’t me.

I, myself, work in the mental health field and know the importance of maintaining your mental health but I find myself comparing my stressors and symptoms to the patients I come across and find myself questioning if I’m being dramatic or if there’s validity in my symptoms and there’s actually a problem. Usually, I have a therapist to turn to but, unfortunately, she moved out of state so I’ve been searching for a replacement with no avail. I’ve caught myself searching “depression symptoms” or “depression test” online with everything pointing to mild depression. I don’t like this because I already have enough to deal with. I can’t even manage my work and school and be handicapped by chronic illness that I can’t handle being mentally dragged down also. I can’t. This isn’t fair.

I’ve been trying to attempt to correct my thoughts by disrupting my routine with added socializing, random trips, and generally getting out of the house more but those all seem to have a bandaid effect because the feelings return when I get home. This leads into one of my main stressors: home.

I’ve lived on this ranch in Taylor since May 2014 because I was continuously getting into trouble with my drinking, I had just decided to stop drinking, and I was newly diagnosed with poly so my parents wanted me to move in with them to supervise/monitor me. This stay turned from me needing a caregiver (I was that weak that I couldn’t take care of myself) to being a caregiver for my parents while they went through their own health issues. Fast forward 4 years and everyone is finally at a point that no additional help or monitoring is needed for anyone. I’m finally confident that my parents will be in a safe and good place if I leave them. This would be great except I haven’t been able to leave because, financially, I can’t. I don’t make enough money to survive in a high-rent city. What if I change jobs? I could except I’d, most likely, work in another field and my job will, then, actually feel like a job (which it never has before). What if I could find a job in my field in another city? I thought of that but I’d rather not be that far away from my parents just in case and the one city that I’d consider moving to (San Antonio) has zero opportunities because their mental health field is nearly non-existent. I just want to get out of this house and be on my own like a normal 30 year old. How am I suppose to be independent or date if I’m living at home with my parents and sibling? I feel so ashamed that I can’t afford my own place in this expensive town and a burden on my family for caring for me. I had an argument with my mother a few months ago about my social life and how I’d stay out. At one point, I used the line, “I’m 30 years old! I can stay out if I want!” to which my mother responded, “Yea but you’re 30 years old and you still live at home!”. I was both livid and ashamed all at once after hearing this. I stay at home because financially I can’t (income isn’t enough thanks to my job and medical bills due to my poly) and because I didn’t want to leave my parents while they were going through their own health problems. My mother’s words hurt because I cared enough to stay and help and it validated my own thoughts on being a burden on them financially. Its one thing to think bad things about yourself and another for your own mother to say so.

Dating is another big stressor for me. Its hard enough to openly date someone and through the “Hey! Btw I’m chronically ill and live with my parents and I’m still going to school. I’m a catch, right?” I’ve had a few close calls but I feel like my living situation and poly always end it early for me. No one wants to deal with a girl who lives far from town, who requires monthly infusion treatments, and probably won’t bare your children thanks to the time and effort it would take to try. Fuck being the nicest and caring person you’d ever meet, fuck that I’m genuine and honest, and fuck that I’m probably funnier than you and will always find a way to make you smile and happy. No, no one wants anything to do with me once they see the baggage I come with.

The one bit of happiness that I felt in a while was when I went back to San Antonio. I went there around Halloween and although I don't have many friends there anymore, the ones I maintain are great and genuine ones. I remember just driving down a residential street near some shops and stopping at a light and looking around the neighborhoods and cars driving past the shops and the people walking and enjoying their day and crying. This is what I miss; this is what I want. I never feel this way in Austin. I feel like a tourist who travels to their destination enough to know their way around but its never fulfilling. San Antonio just feels like home. That weekend, I got myself an AirBnB and enjoyed being independent and seeing friends while in town. I’m sure the independence helped (and the gorgeous house I stayed in) but I felt more at home than ever. I want to live in an old apartment alone with built in shelving and brightly colored painted walls; I want to be able to walk down my street and visit the local taqueria and enjoy Mexican food like my mom would make; I want to engulf myself in the city’s culture and festivities and enjoy them with my friends; I want to feel like I’m apart of something again.

I need to do the following before I can officially start worrying about my mental state: continue to socialize/get out more, increase physical activity (I’ve been slacking at the gym big time), maintain healthier eating habits (I’ll either eat crap or forget to eat at all), and continue to search for a therapist. If these things are accomplished and my symptoms are still present in a month’s time THEN I'll take the next steps that are necessary. Right now, I just want to sleep and hope that tomorrow will be better. I just want these feelings to go away.

[chulitamyositis]

I’m back!

I vowed never to forget about blog entries on here and I did. For a year. 

The whole purpose of me creating this blog and documenting my struggles with myositis was so others could find solace in my story knowing that they’re not alone. When I was first diagnosed years ago, I searched for weeks for someone who, also, suffered from myositis and there were only blogs that had been long forgotten. I wanted to be the person that someone would come across and feel not so alone like I once felt. This year of absence has had purpose but its still not an excuse because who knows how many new people I could have comforted in that time span. Well, I’m back now.

This past year has been the year of me. I’ve been focusing on bettering myself and allowing myself to accept the good things that come my way in my life. I’ve even gone back to school to finish my psychology degree! My dream job would be a mental health advocate so I could walk people through the mental health network and point them in the direction they’re needing. Working full time and going to school part time has been a struggle but I’ve managed to find a good groove both physically and mentally. When I first started school, I opted to work full time and register for 3 courses at a nearby campus. This decision nearly caused me to flare up due to the severe stress of having to balance every aspect of my life that much more. I, basically, jumped into the deep end on that one thinking I could do it all and suffer no consequences because “I did it before!” I forgot that I’m not young, healthy, and jobless like I was then so I couldn’t do everything the same. So far, 1-2 courses per semester work well enough with my poly and work so although school will take longer to complete, at least I’ll be healthy when its all over.

I’ve, also, been focusing on being independent and social again. I don’t drink or do drugs, I work full time, and attend school so my social circles consist of family, coworkers, a few friends in town that I rarely see, and my long distance friends that are hours away. I began to fall into a funk of a routine so I told myself to say “yes” to every social opportunity that came my way. Happy hour? Sure! Movies? Why not? Random trip to Target? Hell yes. Lemme tell you... saying “yes” has worked wonders!  I’ve been in such a good place in my life these past few months with school and socializing and work that I’ve gone the extra mile and started going to concerts again. I’ve been hesitant about standing for long periods (I’d get muscle aches afterwards) but the after effects are minimal enough for me to distract myself from the pain and discomfort. I never thought that I could combine myself from 7 years ago to myself now but its happening more and more. I love it.

My physical self has been a journey as well. I’ve transitioned my weekly training sessions from general strength training to maintain the muscle I have left to building muscle which means more intense sessions. I love it! I’m, probably, stronger than I was before I got sick! I’m so lucky that I was diagnoses quickly and correctly and that my doctor was an advocate for physical therapy versus occupational therapy (rebuilding versus managing). I know other poly suffers aren’t as lucky as I am but I’m here to say that its possible! I still get the occasional muscle pains and fatigue but I power through them with no repercussions other than naps (but who doesn’t like naps?). Thankfully, my poly symptoms have been nearly absent (CK levels are in their 300s!) so that means less stress, more positivity, and a healthier lifestyle has helped me a lot. I plan to see about this anti-inflammatory way of eating (basically Vegan diet) but that’ll be too drastic of a transition so... baby steps.

I’m not longer doing my plasma donations in Philadelphia per their need and I’m assuming they’re completing their study and no longer require my plasma to help with their research. I miss Philly especially when Fall comes around but I’m happy that I got to help my fellow myositis suffers with this research while it lasted. To the best of my knowledge, they were using my plasma because of a rare antibody I have (no idea what it is) and they were trying to see if this antibody could help predict flares in other myositis patients. This prediction capability would be amazing for mystics patients since we never can tell when we’re getting sick (let alone sick already) thanks to feeling like shit all the time. Once I can find the research paper, I’ll be sure to link it here.

Again, I apologize for my absence but I’m back now so everyone who reads this and has any questions, advice, or wants to chat, please contact me! You’re not alone and its ok to be in the place that you’re in because it’s going to get better. It may not seem like it now but it will, I promise. 

[chulitamyositis]

Its over; Its done.

So a few things have been going on (medically) since my last entry: I’ve gotten my first cancer screening, my first EMG, and had my first dispute with my insurance. A lot of people don't know but there’s a large percentage of polymyositis patients that go on to have cancer at some point in their life so its recommended that poly patients have annual cancer screenings. Seeing as i’ve never had one since being diagnosed 4 years ago, my doctor suggested I get one done. Since being diagnosed, I read a lot about the poly/cancer connection and started to have an irrational fear of cancers because of it. The impending CAT scan began to be horrifying but luckily i began to realize that I was worrying about things that may not even be true and luckily they weren’t since my results came back negative (YAY!!). Now that that was out of the way, next came my first EMG. An EMG is used to measure the muscle damage in a person without having to do a muscle biopsy. The EMG is made up of two parts but both are equally uncomfortable and awkward feeling (not painful). There’s a taser type tool they use to shock your muscles to see their reactions and the other is a small acupuncture type electrified needle they use to just stick in the muscle. The only thing I could compare the tests to would be like plucking out single hairs from sensitive areas on your body; it kind of hurts but its more uncomfortable than anything. Those results were more immediate and everything came back with minimal muscle damage progression so yay!! Then came my issue with my insurance. So my issue with my insurance has been that they don’t like the setting that my infusions take place (hospital setting versus office setting) so they denied authorization for my infusions on two separate occasions. After submitting multiple appeals for both occurrences and getting my insurance to acknowledge that my other options for where to have my infusions done (at home or at my choice of two infusion centers both being an hour away), my insurance caved and allowed two months worth of infusions. I was happy to get just 2 months of approval but my awesome doctor and her staff stayed on top of my insurance and submitted a prior-auth for infusions for a 1 year period (not 2 months) and my insurance agreed!! Now I don’t have to worry about when I’ll be able to receive my treatments! This all being said, I may have been terrified when each of these events were going on for various reasons but nothing compared to the scare I had when Trump began talks of dismantling the Affordable Care Act and changing the way insurances care for patients (and not for the better). I’m the insurance company’s worst nightmare: I’m a young, sick, and chronically ill person who will need treatments for the rest of her life. This means that I’ll be constantly using my insurance and with my current policy, I only use my insurance for the first two months of the year and by then I’ve hit my out-of-pocket (OOP) maximum so I get coast the rest of the year with 0% responsibility after meeting my OOP. I probably ring up tens of thousands of dollars a year and imagine would the amount would be after a few decades. A lot, right? Well, under Trump’s suggestions, the insurances would change their current policies to allow the insurances to no longer accept pre-existing conditions (thats me). This would also effect those with private insurance outside of the Healthcare Marketplace (also me). When Trump began talking about changing the current policies on healthcare to help out insurance companies instead of the citizens that need it, I became scared for my life. Luckily, the rest of the world agreed was like me and Trump backed down on his appeals.

Now that all of the fear and anxiety has passed, I’m going to focus on the best time of the year (IT’S FALL, Y’ALL!) and all it brings with it. Maybe focus on my birthday this year too (turning the big 30). But I definitely feel like Frodo after he finally got rid of the ring. “Its over; its done.”

[chulitamyositis]

Changes

The last time I made an entry was in September of last year. The reason behind this is because my (then) boyfriend had broken up with me in October and I’ve been on a journey of self-discovery ever since then.

When I became single, I was devastated. I felt deceived, abandoned, used, useless, worthless, and ugly. My best friend, boyfriend, and part of my support system were all gone in one swoop. I didn’t know what to do with myself. This was the first real relationship I had ever been in and it lasted nearly 2 years (3 if you count our friendship prior). I had to learn to be alone again. Before I became single, I wrote about needing to become more independent and look for entertainment and self-worth outside of my romantic relationship. Coincidentally, this break up was a kick in the ass to do all of these things.

I focused on my sobriety first, then my health (stress increases my symptoms), and then me. Weirdly enough, I never thought about drinking after the break up. I was more worried about a flare up on my horizon from all of the stress I was enduring but luckily that didn’t happen either. Focusing on me became the hardest part.

I focused on becoming independent again, kept busy my hitting the gym even more, and branched out into the dating world again (because a good date is the best distraction). Things became less about the other person and more about me. It’s been 6 months that I’ve been single and it’s apparent that I’m becoming “me” again:

- I’ve lost weight - I’ve began dressing in my quirky style again - I’ve gotten my attitude back

My poly has done a lot of things: kicked my ass, made me weak, made me humble, made me health conscious, and now it’s made me focus on my priorities. This disease just keeps surprising me.

Since my last entry, good things has happened as well:

- I went on a two week vacation to Europe (Ireland, Scotland, and France) - I’ve lost 14 lbs (so far) - I’ve began training with a trainer I began seeing a trainer prior to my Europe trip to prepare myself for the vigorous activities I’d have to endure. Not only did I exceed my expectations on how I handled all of the walking/climbing I had to do, but I even surpassed my expectations on how long I’d last. Since training helped me so much fitness wise, I’ve decided to continue it. My body is going through a journey so stayed tuned on that transformation.

I’m still learning new things and trying new things so there’s definitely more entries coming soon. Until then, turn and face the strange.

[chulitamyositis]

Friendships

For the past week, the issue of me and friends has been becoming more and more prominent. My issue is simple: I use to have a large social circle made of acquaintances and friends and now my social circle is made of acquaintances and very few friends. In my head, when I say “friend” I mean someone i speak to regularly about my daily life. I went from having plenty of friends to hardly any and I think that it’s because of my sobriety and because of my poly.

I’ve been sober since April 30th, 2014 and I was diagnosed with polymyositis in August 2014. Sobriety saved my relationships with my family, made me healthier medically, and has me mentally stronger than I knew I was capable of. My polymyositis has taught me that I have limits, to be humble, and to accept help (its also been a second reason to not drink thanks to all of my medications). Both sobriety and my poly have their negative effects as well: Sobriety has alienated me from people my own age and has socially stunted me and my poly has limited me in every day activities and cause me to alienate myself at times (I call these “bad days”).

It’s one thing to have friends disappear from my life due to sobriety but it sucks to have it continue through my poly diagnosis. For example, I do have people that let me know when they’re in town but I usually can’t meet them due to my poly (too tired, med regimen for that day won’t allow me to drive, activities planned are too strenuous, etc). Eventually, the gestures and invites turn into empty ones and then they eventually stop happening. I’ve reached the “stop happening” part. I feel sad seeing everyone on social media having a blast and doing things that I wish I was dong, that I wasn’t invited to, or that I had to decline. I keep telling myself, “even if you got an invite, you would end of declining so quit being sad” but it still hurts. Still feels better knowing that someone was thinking about me enough to invite me somewhere or to something.

“Friendship is a two-way street.” It is. I can’t rely on people inviting me places when I can, also, invite them places. This is something that I need to work on. I just hate inconveniencing people to conform to my needs for us to be able to hang out. Michael, also, has made me aware than making new friends as you get older becomes increasingly more difficult. I know I can purposely go out with the mission to make new friends but I stop myself from trying because I’d probably be rejected. Who wants to hang out with a sober sick girl in their spare time?

I think that friendships go through a kind of purge every once in a while. You’ll move and adjust your social circle; you’ll get a better job and adjust it again; you’ll experience a life changing event and change your social circle again. Sobriety has caused me to see who my friends where and so has being diagnosed with poly. The friends that I currently have know who they are and know that I appreciate our friendship. Everyone else has kind of drifted away because they have their own lives and people grow up. It’s just been more and more prominent that my old friends are drifting away because we don’t communicate like we use to. I’m sure if they needed anything from me, I’d help in an instance if I could and vice versa but it’s still sad.

In the midst of mourning my eventual friendship losses, I have to remember that I do still have friends remaining and my family as my support group. These people have stuck around through numerous hardships in my life and I through theirs.

For anyone who’s young and sober: It’s hard but you made the right choice.

For anyone who’s young and diagnosed with a chronic illness: Stay positive.

This, too, shall pass.

[chulitamyositis]

TMA 2016 Patient Conference!

[chulitamyositis]

TMA 2016 Patient Conference

This year, I managed to attend The Myositis Association’s 2016 Patient Conference in New Orleans. Not only did I attend but I brought along both of my parents! The conference lasted 4 days and comprised of their board of directors, medical advisory board, and vendors that offer services for Myositis patients.

The purpose of the conference is to inform Myositis patients (first timers and old veterans) of new and future research/clinical studies for Myositis patients, general information on Myositis and its complications and medications, and to give others a chance to meet other Myositis patients much like themselves. Through out the course of the conference, I’ve met people from all over the world who suffer from what I suffer from and it’s a good feeling to know that you’re not alone.

My favorite session during the conference was on prednisone and the basics of the medication as well as a new drug that is promising to have only the benefits of the drug and none of the negative side effects. The drug is still in its 2nd phase of the trial so even if the drug passes the rest of its phases, it probably won’t be available until 2018/2019. Besides that, water aerobics was pretty fun. Today is the last day of the conference and I made a public recommendation to the board of directors to 1.) advocate for the youth who suffer from Myositis and 2.) provide a mental health network through individual support groups across the country. Young Myositis sufferers are a minority with this disease and living with a chronic and potentially fatal illness requires your mental health to be taken care of. After my comments, I was bombarded with people thanking me for speaking up and a few younger sufferers who were thankful to see that they weren’t alone. I think this is the best ending to the conference that I could ask for.

[chulitamyositis]

Sorry for being MIA for the last 5 months (I didn’t even realized I’ve been gone that long!) but life has been happening. Of course.

First off, I ended up saying, “Screw it!” and chopped off all my hair and I LOVE IT. I don’t know why I made such a big deal out of it before! I feel so much lighter, this short hair length is doing wonders in this Texas heat, and getting ready for the day takes little to no time at all. I was more concerned about how I thought others would perceive me that I always hesitated with cutting my hair but now I don’t care.

I had made a split decision on cutting my hair on a Sunday and told myself that it was now or never. I ended up finding a hair stylist at a salon nearby that day and she was amazing enough to not only take out my hair extensions but also walk me through the process of seeing my natural hair under the extensions and chopping it all off. Luckily, she had experience with other clients in similar situations and her best friend has alopecia so she knows how fragile people can be about their hair. I’m pretty sure I’ve found my hair stylist for life with this girl.

As for me and my meds, I’ve found my regimen and time frame so my Fridays are spent with only 1-2 hours of fuzziness and not my whole Saturday like it use to be. I’ve, also, back on my IVIG treatments and my CK levels are in the “normal” range! I’ve been slacking on my workout regimen though thanks to being lazy and having to hold off from working out thanks to my bi-weekly blood work. I worked out last Saturday and I can tell that I haven’t been to the gym but we all gotta start somewhere. Towards the end of August, my folks and I will be going to New Orleans for the Annual Patient Conference for Myositis! Not only will I meet people with my illness but I’ll meet doctors who specialize in my illness. Plus,I’ve never been to New Orleans so I’m excited to explore the architecture and food there. I’m going to eat ALL THE THINGS!

I’ve, also, come across a few young people via Reddit who have some form of myositis and although I responded to them via Reddit, I should have maintained my blog here. One of the main reasons why I’ve turned my own personal tumblr into more of a public journal for me and my poly was to inform others about what my illness is and to ask questions if they had them. I’m only 28 and when I was first diagnosed 2 years ago, I researched and googled for other myositis sufferers and would only come across older folks and no one near my age range. I want to be that person that a young myositis patient will find when they go looking for others like I did. It’s one thing being diagnosed with myositis but it’s a bit different when you’re younger also. So, to my fellow readers, I’m sorry for being lazy. I’ll write more often; pinky promise.

[chulitamyositis]

Chopping Block

In the last two months, a few things have happened: I’ve changed my treatment medication (again), I’ve been seeing a therapist on the regular, my workout regimen is back on track, and I’ve got the choice of either chopping off my hair or getting a full head of hair extensions.

 Two months ago, my blood work showed that my poly was creeping back into my system and I had to stop working out as often until my poly was under control. My blood work was still high even after halting my gym routine so my doctor made the decision to switch my treatment medication, methotrexate. I’m thrilled that I’m able to get back into my gym routine but this new treatment is known to be even worse for your hair. You’re more likely to lose hair on this medication but, thankfully, your hair will grow back once you’ve stopped taking the medicine as well.

 I’m on my 3rd week of this new medication treatment. This medication is meant to be taken once a week and on a day that you’ll be able to be out of commission due to the side effects it may cause so I’ve chosen Saturdays to do this. The top four side effects of methotrexate are nausea, fogginess, fatigue, and headaches. Thankfully, I’ve only experienced fogginess and headaches in these past 3 weeks so I’m not complaining. The brain fogginess is my main nuisance and this point. I feel as if I just woke up from a deep sleep and have to constantly widen my eyes to wake up or drink coffee to get a moment of clarity. Besides that, this medicine has been ok.

 In the midst of starting this new medication, I’ve started up my gym routine again! I’m happy to have something to do to past my time and relieve stress. I’ve only put on 3 lbs since I stopped working out so that was quickly burned off so now I’m only 12 lbs away from my short-term goal. I know that it’ll be harder for me to be happy with my weight since none of it will disappear from my face until my prednisone dosage is decreased. I’m still frustrated with this but I have to remember that I can’t lower my dosages until my poly is under control and hopefully this new medicine will do that.

 Right now, I’m torn between either cutting my hair off or getting a full head of extensions. I told myself to wait 2-3 weeks into my new treatment to see how it affects my hair and then I’d make my decision: pixie cut or extensions. With all of the thinking that I’ve done regarding my hair, it’s come to me not being happy with my results until I can lose weight. If I cut my hair, all I’ll see in the mirror is a fat moon face; if I get hair extensions, I’ll be able to hide my fat moon face behind my locks but spend money in doing so. I’m really holding back from cutting my hair because I see it as admitting that I’m sick.  In my opinion, if you have to cut off all of your hair because of an illness or medication that is affecting it, that’s cutting your hair due to sickness (ex. cancer patients). I’m not sick! Not like that! I use to be sick but I’m not anymore! I use to not be able to get out of a chair on my own but now I can! I use to not be able to wash my own hair but now I can! I’m not sick, damnit!

 Speaking of mental distress, I’ve been going to a therapist regularly every two weeks and it’s helping. My therapist helps me process all of these deep thoughts that I have regarding my illness and my future with it. If you let your mind wander into a darker path, it can be scary and even more so when a life-long illness lingers over you so I’m happy that I’m addressing this earlier before I need the help rather than later on when I’m already scaring myself. I know that I’m going to talk to her regarding my hair when I see her next so maybe she can help me decide.

 Although today is suppose to be my day to take my meds and relax, I’m feeling fine enough that I’m going to attempt to go out and enjoy the beautiful day with my boyfriend. Yea, I’m stressed about my hair and yes I’m worried that I’ll never be able to loose this weight but my hair and weight won’t and can’t ruin a day as beautiful as this one.

 Frodo: I wish the ring had never come to me. I wish none of this had happened.
 Gandalf: So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us.

[chulitamyositis]

Ugly Duckling

We left off at the beginning of my CellCept treatment and near the end of my waiting period for my insurance. As of now, I’m insured again, CellCept is starting to damage my hair, I’ve began a strict workout regimen, and I’m trying to find a therapist.

As soon as my insurance kicked in, I saw all of my doctors and made sure to do blood work. As it turns out, my poly had gotten worse so I had to increase my prednisone dosage. CellCept, as it turns out, has different effects on everyone but the most common being hair damage and I am one of these lucky people. My hair has become very brittle and dry and my hair color won’t keep for as long as well. Luckily, my extensions mask all of these effects but it’s still awful. There are days when I think it’ll just be easier and cheaper to just chop all of my hair off but then I see how beautiful I am with my long hair and I take it back. Speaking of beautiful, I’m not feeling it as of lately. Since I’ve been diagnosed with poly, I’ve gained 40 pounds. 20 of these pounds were healthy but these last 20 were all thanks to prednisone. I was told by my doctor that long usage of prednisone can cause weight gain mainly in your face and on the front of your stomach and they were right. There are days when I can’t even look at myself in the mirror and just feel completely not myself. About two weeks ago, I decided I had enough and started counting calories and going to the gym every other day. Although it’s only been 2 weeks, you’d think some results would be visible either on the scale or in my clothes but the opposite happened: I gained weight.

As soon as I saw the number on the scale, I nearly lost it. I’ve been putting so much effort into changing my ways and being healthier and I’m going about it in the right way but nothing is being shown for it. It’s not fair! Hell, it would be easier to be sick again and lose weight than to be healthy and be this much overweight. It’s not a good way of thinking but you can’t blame me for seeing things this way. Prednisone makes it that much harder to lose weight and it’s already hard enough to lose weight in your face and stomach. I’ve adjusted my eating habits and have become permanently hangry to everyone around me, I’ve got a black cloud surrounding me because I don’t like how I look, and I’m now unable to lose weight because of medications that I’m taking to keep me healthy. It’s just not fair. I know that maybe in a few more weeks of keeping this routine up, I’ll begin to see real results but damn if these past two weeks weren’t discouraging. I’m trying to maintain a positive demeanor but my poly is really kicking my ass psychologically right now.

A few weeks ago, I reached out to a therapist in a neighboring town in hopes to adding therapy to my monthly routine of doctor visits. Living with a chronic illness can be challenging and although support groups and family and friends my help, sometimes an outside source can be helpful as well. I know that this disease is going to be with me for the rest of my life and I can’t manage to tolerate and handle this all on my own so I wanted to reach out to someone that can direct me to ways cope and handle the feelings that go along with it. As of right now, my potential therapist is fully booked until the end of this month so I’ll have an official appointment with her soon (I hope). It’s kind of a coincidence that I’m currently not in the best of places in my head and seeking a therapist but its ok.

[chulitamyositis]

I wonder what’s next.

I last wrote when I was barely beginning my IVIG treatments. When I first started my infusions, I had discovered a myositis support group that was based out in Dallas and my parents and I managed to make it to one of their semi-annual meetings. The meeting began with everyone telling their individual stories and everyone’s sounded so similar to mine although I was the youngest one there by far. After that, we broke into groups determined by our myositis diagnoses or caretaker status. I managed to be seated with 4 other polymyositis sufferers and I felt so welcomed! They had a lot of advice for me and encouraged me to ask any question I had and they reassured me that although I was young and suffering with poly, my life would go on and that this disease won’t ruin my life unless I allow it to. It felt so great meeting others like me and it felt even better looking at these people and seeing my future in a way.

I managed to do about 4 months’ worth of infusion treatments before I ultimately stopped them. I didn’t mind having to do these infusions 2 days a month every month but I knew I couldn’t do this for the rest of my life. This thought became more concrete once I found out that each Privigen bottle cost about $5,000 and I’d have 2 bottles per infusion session (about $20,000 each month) and there’s no way in hell my insurance would pay for that. I decided to switch insurances and am now in a 2 month waiting period until my new insurance becomes effective.

As of right now, I’ve been forced to try a new treatment for my poly and it’s a pill called CellCept. My main concern about this pill was the hair loss that it will cause but because I have no other choice, I have to take it. I’ve only been on this pill for 3 weeks and, so far, I’ve only noted fatigue and weight loss as some side effects. The weight loss isn’t bad but the fatigue has its horrible moments. There are times when I find myself unable to stay awake at work and having to run away to the bathroom or break room to rest because I don’t want anyone to see that my illness is affecting my work. Coffee, added sleep and sheer willpower haven’t been able to keep me awake and alert most mornings so I’m at a loss as to what to do next.

[chulitamyositis]

And so it goes.

Sorry for not posting sooner, world! I've been dealing with a lot of good and bad things in my life since the last time I posted. The last time I posted, I was dealing with the worries about my hair. Turns out, my medications were the reason for my hair becoming brittle, thinning out, and/or breaking off. I tried to cut and style my hair to mask everything but I still hated it so I ended up taking the plunge and I got hair extensions! Now my hair is thick, long, and I feel like myself again! Another reason why I've been so busy is that I've gotten a new position at my job. It's fulfilling, I've met some great people, and free breakfast/lunch/coffee helps too. Lately, I've been living a steady life of eating right (when I can :P), working out, and living as healthy as I can. Although I've been relatively healthy, I've noticed that I've become weak again. Went to the doctor assuming she'd tell me that my poly is just flaring up again but my poly decided to come back with a vengeance. Seeing that I've been on corticosteroids for over a year, she suggested that I start IVIG infusion treatments. IVIG treatments are given as a plasma protein replacement therapy for immune deficient patients who have decreased or abolished antibody production capabilities. In the case of patients with autoimmune disease, IVIG is administered at a high dose (generally 1-2 grams IVIG per kg body weight) to attempt to decrease the severity of the autoimmune diseases. Basically, I'm receiving antibodies from these treatments to fight off the my own antibodies that are attacking my muscles. Had my first treatment today and the individual infusions last anywhere from 4 to 5 hours long. I walked into the infusion center expecting to be in a crowded room filled with cancer patients and other sick people but we all had individual cubbies with our own TV, comfy chairs, and plenty of snacks. The only side effects that I've been suffering from are headache, drowsiness, and a huge appetite so I think I'm alright. We can only tell if the treatment is favoring me after 2-3 months (or 3-5 more treatments) so we'll see how it goes. As of right now, I'm scared because this disease is becoming more and more of a serious thing and I can't fool myself into thinking that perfectly fine. I have a disease, this disease is a part of my life but it doesn't have to be my life. Until next time!

[chulitamyositis]

An invincible summer

Polymyositis has become a huge part of my life and I’ve come to accept it but that doesn’t mean that I can’t have bad days along with the good ones. As of lately, the bad days have become more continuous than ever.

About a month ago, I noticed that my hair was starting to clog my shower drain after a few showers. No biggie, right? Then I started noticing my hair brush needing to be cleaned of hair more and more often. As of lately, my hair is coming out at such a fast rate that it’s scaring me. It’s one thing to have your hair come out in chunks in the shower but to see it when you use hair products (gels, hair ties, ect.) is kind of ridiculous. It’s like I can’t do anything to my hair without strands falling out.

I have my suspicions to why this is happening:

My thyroid is acting up. This would explain my hair loss, increased fatigue, and weight fluctuations.

Abnormal hormone levels. This would happen because of all of the medications that I’m taking plus I have a history of my lady bits not cooperating and having a mind of its own.

Medication side effect. I kind of doubt this is the reason for my hair loss but it’s an option.

My self-confidence has plummeted and although I go out into public with a smile on my face, all I think of is, “They can see my scalp,” and “Everyone’s looking at your hair.” It’s humiliating. I’ve gotten close to cutting my own hair one evening when I saw a clump of hair gather in my hands after shampooing. How am I supposed to be feminine with thinning hair that’s falling out? How am I supposed to live with this?

Before I go too far down the rabbit hole, I’m getting tested next week for my thyroid and hormone levels. I’ll find myself going off on a tangent of self-loathing and self-doubt and as soon as the tears start to fall, I’ll snap out of it. “You don’t have the time for this,” “You’re tougher than this,” “This can be a chapter in the book or this can be the book.”

Things are pretty tough right now and I’m trying my best to keep my head above water and to reassure myself that things will get better so the only thing I can do is wait. I read a quote last week in a sobriety forum and it’s really come to help me in these trying times. Hopefully, it’ll you out too.

“In the depth of the winter, I finally learned that within me there lay an invincible summer. And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger- something better, pushing back.” -Albert Camus-

[chulitamyositis]

I'm ready.

I haven’t written in quite a while and it’s because life decided to happen.

My health decided to fluctuate as well but for worse. I’ve been attending physical therapy for my polymyositis (PM) twice a week for several months now and I’ve made great improvements! I can get up from low seating and the floor (THE FLOOR!!) all by myself, my swallowing issues have receded, and my fatigue has become more manageable. With all of these positive things happening in my life, the universe was bound to notice and throw in a wrench somewhere and she did. I ended up getting severe allergies (or so I thought) and felt slightly under the weather so I went to the doctor to get ahead of any sickness that may occur. Turns out that I was already sick and it was affecting my muscles. I figured that the weakness and fatigue that I had been feeling was from allergies or being sick but it was my PM flaring up due to being sick. I knew that I’m easily susceptible to getting sick because of my current medication cocktail but I didn’t know that getting sick would cause my PM to go into overdrive. I’ve gone back a few steps in my physical therapy process because of this and it just sucks to have to go three steps forward and one step back.

 I’m currently working through my flare up and my mentality towards taking on this beast of an autoimmune disease is getting harder and harder to maintain. My bad days with PM have gotten closer and closer together and there’s been so many times that I’ve wanted to give up and just let my body waste away like it already. I’m going to the gym as much as I can and eating better and generally take better care of myself. All of this work that I’m doing isn’t to make up for lost progress but to be stronger and more prepared for another flare up if it were to happen. I never really thought about it that way before but it makes a lot of sense and my mentality isn’t so much of what I lost but what I need to gain. It’s a new lesson for me and I’m currently trying to live it every day since the flare up.

 My life is quite different were how it was just two months ago so I’m ready for what’s to come in the next few months. More tests and more physical therapy. To quote Jimmy Eat World, “I’m here; I’m now; I’m ready.” Bring it on, Universe. I’m ready.