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Months 2729 Update: Long Haul Feels & TSW Heals Vlog

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It’s been a long haul, people! I’m feeling hopeful that I’m seeing the end of my half-year symptom resurgence/flare, but it’s been a tiring ride so far. I’ve really hit a low in mental/emotional health in the past few months and am feeling fragile and wiped out.

Hi it’s been a really long time and i have a lot of updates because it’s been a really long time so okay hi here’s what my face looks like right now you can do skin check what’s up here are my hands you can see it’s still got some real knobby knuckles going on got some wrists let’s show you some arms still got these little creases here which i don’t love but

Let me show you my legs because they are killing it right now see these suckers so i still have like there’s like some little lesions that’ll pop up now and then but they are like so smooth and my feet are doing great i’ve got some bumpy ankles my sock got some bumpy ankles that kind of get itchy and then like back here and my heel is like not great but my legs

Are so great so hi yeah my skin has smoothed out again i have i mean it’s been like a six month flare essentially maybe more six to eight months i’m not even going to look back and see because i don’t want to but so it’s been like a six to eight month flare where it’s just been crap kind of solid besides maybe there’ll be like four day stretch where it’s like oh

I don’t feel awful so i’ve been kind of living for those days it’s only been maybe like once every other month that i’ll get like a little kind of four day window break and then it’ll kind of be back to being crap so i might be just another four day window break i don’t think so i think it’s gonna at least be a little bit longer of a break but it’s been really

Really nice i got to kind of really my lowest point in tsw i mean there are different lows of tsw so it’s not a consistent scale like i have skin now so that’s definitely a higher high than back sorry i’m itching myself so that’s way higher high than like two years ago when i was sitting in the bath completely raw and blind like doing a lot better than that so

Just like mentally though it’s been really different being kind of like more into the long haul tsw stage like i’m almost officially at two and a half years in so that is way longer than i was expecting to be terrible so here’s what i looked like a few weeks ago and yeah that was really super discouraging like looking really really terrible having like tons of

Skin proliferation like being in tons of pain again taking baths again and just being like when is this gonna end so i was just feeling super beyond exhausted where i just hit a wall i was like i can’t endure this anymore just like i’m so so over this there is being mentally over it and then there’s just like i don’t have any more gas in the tank and i can’t do

This anymore i really hit that wall like maybe two weeks ago where it was just like i can’t function anymore i i have nothing left in the tank so i’m really thankful that i’m past that point now and i just had to be patient and really pray a lot and talk to my care team and all that and like we’re all over it and it’s not just me but like my husband is super over

Tsw my mom is super over tsw like everybody who is on the fellowship of the ring with me if you’ve watched my suffering video talking about that the entire fellowship of the suffering is really over this so it’s hard when like kind of nobody has gas in the tank to keep dealing with how awful this is and how disruptive it is to all of our lives so i’m super thankful

For this little break and maybe it keeps getting better i still have hope every day that like i’m going to wake up tomorrow and things are going to continue to look up and they really have for the last like four days now where like every morning i’ve woken up and it’s like oh my gosh i’m so much smoother like wow my bumps are so much better like oh i’m not shedding

As much i’m in less pain like i don’t have like anything splitting open so it’s really really great i’ve got some more eyebrows growing back again and if you can tell but like there’s some whispers over here and like a few more eyelashes those kind of cycle in and out but whatever yeah overall my health is really like looking back up again big excitement two i’m

Completely off of cyclosporine like any immunosuppressants i’m completely like all-natural no prescription drugs besides like an occasional tram at all if my pain gets out of control so that is huge news so i’ll do a whole cyclosporine video as far as if i felt like updating you did i feel like i had like some kind of post flare or rebound or like would i do it

Again that sort of thing so if you have any questions feel free to leave them in the comments i’ll make that video and i’ll try and answer everything because i know that everybody’s really interested in immunosuppressants i gave cyclosporin a shot for gosh it was probably like a year and three months i was on psychosporin before i went off of it so i feel really

Like happy being like completely prescription medication free still happy that i had some relief from cyclosporine but it feels really good to be like this is 100 me healing and doing this and not like some kind of band-aid on a bigger problem so i’m really emotionally that feels really good for me so happy news from me yay other symptom news just to try and

Keep the running list going of how tsw’s been going still been changing my sheets about like every other day so that’s kind of old too like i just love to sleep in bed like a normal person um i have been taking mostly showers punctuated by like a few baths oh one big change for me in the last couple of months that has like felt good and i think has maybe i think

It’s helped my skin heal to a certain extent like this is just what i’ve needed right now is um doing like a dry day in between like a bath or a shower so like letting my skin get really dry and just like not doing moisture so it’s not like a no moisture therapy thing or anything like that but it’s just like i feel like it’s good to give my skin a crusty dry day

In between so it can heal up in between exfoliation and then i can exfoliate it all out and then i can move and like dry days are really tough because my skin gets so tight i can’t really move very well at all like moving is really painful because my skin is so super tight and inelastic but i think that it does really help with like just big raw spots that will

Show up like it gives that a chance to heal and not just constantly be raw with me like exfoliating all the dead skin off not pushing nmt on anybody for sure like i’m really skeptical of all that still need to make a video on that but yeah that for me right now has been good i tried doing like dry days or really tried doing nmt back like when i first started tsw

And that was completely like abusively unsufferable it was insufferable it was so painful and so bad so at this point i have skin i’m not oozing very much at all like i’ll occasionally once again have an itch attack and have ooze come out of my face or in between my fingers again my hands have gotten a little bit worse it’s been good for me right now in my journey

Feel free to try it out and see if that feels like it helps heal your skin a little bit in between days so it’s not just constantly raw but that has been good for me for right now and we’ll see if like it continues being good or if it’s just something that works for right now so i’ve been continuing to moisturize like every other day doing my just once a day

Moisturizing wake up and take made meds and then i’ll like either take a shower in the morning or i’ll take a shower in the evening it’s been kind of inconsistent just depending on what feels good and how much stuff i want to get off my face but this is me i took a shower last night so this isn’t 24 hours without a shower but you can see like even just 12 hours

It’s been amazing compared to where i was last year after like 12 hours i couldn’t like move my face and it was totally inelastic so we’re getting there um i haven’t been a tomato coming out of the shower either like i’ve still been burning my body and the different itchy parts in the shower and after doing that for two years i’d still come out of the shower and

Be like as red as a lobster but i’ll get out of the shower and look at myself in the mirror and be like whoa oh like i’m kind of i’m still white so my face is still definitely the brightest part of my body followed by my forearms and like my neck still hasn’t been perfect or anything but things are looking up i’m feeling a lot more hopeful like it’s summertime here

And sun is the biggest healer that’s irrefutable for tsw so i’m really excited that we’re finally getting some sun i’m gonna stay out there as much as i can this summer and i’m just hoping it’s gonna be a summer of healing i’ve actually quit my job to keep my stress levels down and i think that that is really going to help too and i think it already has helped it’s

Helped my mental state emotionally just not having to juggle so much stress and try and be like a normal person like doing super high pressure high stress stuff all the time and leading people and leaning departments so i quit my job and i’m just doing like freelance work right now as much as i want to and that has been just really great emotionally and mentally

Like not everybody can do that obviously that’s been another big boon for me so i feel like i’m checking off a lot of boxes as far as off of any kind of prescription medication getting my stress under control able to kind of do some drier days here and there and all of those are really positive my sleep still has been pretty disruptive overall my sleep was better

Probably like four months ago i felt like i was sleeping better but i still a really hard time getting sleep so that’s been challenging yeah itching day to day has been better again in the last four days i was having like four edge attacks a day again and it was just really really hard in the past few months but it’s cleared up again where it’s only one kind of

Light mild itch attack a day versus like four really extreme ones where i just feel like i got out of a prize fight so yes we’re doing okay it’s way longer than i expected to be in such severe tsw where it’s really debilitated every part of my life relationships and work and like self-esteem and all those things mentally emotionally but there are worse things than

Tsw and i keep providing myself of that where i get to learn important lessons here right like humility and patience and being ugly and having like my appearance stripped away from me has really been humbling and horrible but also i don’t know help me become less appearance focused and i think more gracious with others and myself even though i would love to look

Pretty and i still have to be really careful about the fabrics that i wear and making sure that my clothes are worn in about three weeks of washing them otherwise like i have gotten hives again a little bit from like pants that i hadn’t worn within like six weeks or a month or something and then i put those on and it’s got hives on my legs so i still need to be

Careful about like sticking with cotton i can do like some polyester and stuff again if it’s a jersey material that’s still soft so that’s my good i used to be able to not even essentially touch polyester without having issues so slowly getting better but still facing challenges and still very over this but we’re gonna get there like i’m getting more whole by

The year even the symptoms go in and out and can be way more severe like in april this was me in april 2021 and this is me april 2022 so like that was really discouraging to see that picture like i’m doing worse this year than last year like are you kidding me but then i looked at april 2020 i was just on fire from the inside out and i don’t feel like i’m on

Fire from the inside out anymore so that’s been really good i’m still trying to stay active i have a percussion massager that i’ve gotten and i actually have really been enjoying that i feel like that is also helping with like lymph movement and stuff to like get that circulating and pumping around and it is a good kind of like nervous system reset too for like

Itch attacks if i start kind of feeling one coming on i’ll ask my husband like can you do a percussion massage in my back and that does kind of help just reset this nervous system overload where it feels yeah like bugs crawling all over you so that’s something that has been positive for me in just some some way to make my body feel good right like my body’s been

Feeling terrible for over two and a half years because i’ve been super steroid addicted before then and also feeling terrible really really terrible for two and a half years and it’s nice to find one thing that at least makes you not feel terrible so i’ve been enjoying the percussion massager as well taking walks and just doing what i can to try and be normal but

Also be gentle on myself i hope all of you guys are doing well this is like such a long and hard road but it’s really worthwhile i feel like the work that we’re doing now is the best work that we can be doing for ourselves as far as we’re ensuring a really healthy future for us and our families and all of that like it’s really really hard work but we’re gonna get

Through it like we have to it’s not like we can go back on steroids because they’re gonna fail us just like they did the first time so we’re gonna make it through and i’ve got a whole lovely summer to look forward to and a whole lovely rest of my life like this is just gonna be a blip on the radar but it’s monstrously hard so sending love to everybody out there

I hope you’re doing great and staying positive i feel like that’s flippant but staying hopeful it’s important to stay hopeful so best wishes

Transcribed from video
Months 27–29 Update: Long Haul Feels & TSW Heals Vlog By TSW Girl