¶ Weather Changes and Life's Challenges
Hi my Spoonie Sisters , I'm your host , Gracefully Jen and Linnea . So, we brought Linnea on and I have some fantastic news , because I have asked Linnea to be a co-host from time to time , so you guys are going to hear more and more of her . I can tell you guys all love her , so I had to talk her and you're doing this with me . So thank you .
It wasn't too hard to talk me into . I enjoy this so much , but I'm so excited I get to join you on these .
I'm so excited too . So what should we talk about today ?
I don't know . Like you know , I think we both have been going through a lot like just physically , mentally , and I don't know if it's the weather change . Maybe we talk about that , talk about how the weather affects us , the way the seasons change , and what do you think ?
Yeah , yeah , I mean so many things and you know , I think for me too it was also . It's also been like the past year . Yes , the past year has been just hard and I don't share all about that because some of it is my private family life that I'm not going to share with the world . But it's hard because we moved a year ago and so we left Same .
Oh yeah , exactly , we both sold houses in the last year .
Yes , we both went like different jobs , like I've went back to work part time a little bit and we both had a lot of big changes .
Oh yeah , oh yeah , I think I mean it's just change after change and even when they're good changes , changes still can be stressful , even when they're good , Exactly . So maybe we should share and give advice on how we've dealt with that , whether it's good and bad or bad .
I agree because there's good in the change , but I don't think some of us are prepared for the bad in good changes .
Absolutely .
It makes you doubt that good change you made .
Yes , it makes sense Like Okay , quick side note If we share this as a video , should we share our good news of what has come to be ? I think so . I think so , I think we need to . Okay , I'm going to try to stand a little bit . Freezing season Ah , it's freezing season . It's 90 times , Depending on where you live . Freezing season is in progress .
You know I got up today and it is currently . Let me look this up .
Let me see what ours is .
We are up to 42 , but it was in the 40s this morning . It's not that bad . I mean , this side of the state does not get as cold as the other , but I mean , we're actually 70 today and our lows were , but our lows were like 39 . You're in your 70s and I talked to you into wearing a sweatshirt because I'm freezing , I'm cold .
Well , you know , you do have a fan on above your head . Yeah , it's like it's stuffy . See , welcome to our lives . You can't make us happy . I mean , I'm just as crazy . I will be in our living room with a fan full blast going . My husband walks in and he's like it's so freaking cold . Why do you have this fan on ? I don't know .
It just keeps the air moving . I just need it .
I mean to go along with that , though , like you know , we're not young chickens anymore and , like for me , part of the stress that I've gone through was they took me off of my estrogen for a while .
Yes .
And for anyone that has ever gone through that , you know I don't have hormones anymore , so hormone replacement was supposed to help me . And then I had this insane doctor that I went to and thought that my hair loss problems were for my hormones .
Now I was seeing a great doctor who said oh no , no , no , no , and they should never take you off of your hormones called turkey .
No , it baffles me with doctors like that , like I've had doctors like that and I've had to go through a lot of doctors to get good ones , and that is the worst part about having a chronic illness . You think the doctors would understand .
Yeah , exactly .
And they should know that certain medications need to be tapered . You can't go to cold turkey on some of these .
Oh yeah , and I'm telling you that month not having my estrogen .
I could sense it when we talked like that , you just were off and not in a bad way , you just , I could tell you just weren't feeling yourself .
Oh , it was so strange . My husband , who's always warm , would come into the house and he'd be like why is it so freaking cold ? And it was because I was turning the temperature down to 65 .
Because you were having hot flashes .
And I was walking around in a tank top and shorts and sweating and melting , and then at night I couldn't even sleep with the sheet on .
Yeah , you'd wake up drenched . It was awful . When I first had my hysterectomy I went through a whole you know hot flashes , everything . I didn't take any replacements . They found that for me they were good . They cost endometriosis in other places , but coming off of it like coming off of it .
I remember the severe symptoms I had , like I felt better not taking it once it was out of my system because it just was a nightmare . You don't feel ?
like you , yeah , and to go with that , this is what I also want to mention is we can have these kinds of symptoms even without having like the problems you and I have had you can have symptoms like that , on that's normal . On your arthritis medications . I don't know about you , but getting used to taking methotraxate oh .
I never got used to it . My body hated it , Even the shots like but coming off of it and Gabba Pinton's another one . Do you have you ever taken Gabba Pinton ? It's another one . I don't like it , but it helps . So I take the minimum because of the side effects .
Like I had to go off of it for something and just even tapering down the way I was , I was going too fast . So what does Gabba Pinton ?
for .
It's for like nerve pain , like fibromyalgia .
Okay , that is one thing I have not dealt with . I they .
They call like for me they call it like secondary , so like my RA , like I guess the way they explained it . You know how our diseases cause other diseases in them , but I just take the lowest dose and it takes care of it Like I've no friends that have it really bad . The fiber and that nerve pain is horrible . It just it hits .
You know how a Charlie horse just all of a sudden you're cramping up . Well , that's kind of like the nerves they just all of a sudden just like are attacking and it's just like they're firing pain . But I'm lucky enough I just can take a little bit of Gabba Pinton and it calms it .
I don't want to go on the whole day , so it's like your nerves are misfiring . Yes , yeah , they're just yeah , that sounds like the way I consider it . Yes , I , I would love for us to talk to somebody . I don't , I can't remember , I think have you talked ?
To somebody on the podcast about fibromyalgia , because it's such an unknown thing and some doctors don't believe it and other doctors it's one of those diseases that it's taken a long time for people to accept it .
I think I have , but I don't think it was their primary diagnosis and I don't think it's what they really focused on talking about .
I would love to find someone that .
I think I might have . So I'm . I mean , for those who Sorry , I didn't , no , no , no , no For those listening , I actually was telling this to Linnea earlier is that my podcast has gotten added into like a I don't know .
It's like a website out there where people can apply to be on the show and in the last two days I've received like 30 submissions or something crazy . People are going to be on the show , although some , I don't know .
I could not believe how many .
All right . Somehow I don't know how somebody that plays guitar and is super healthy qualifies to be on the podcast . Yes , you know I this is about chronic illness , life . So , yeah , but anyway , okay . So we're going to circle back , because you and I know that we just kind of got off . We do that , we do that a lot , so welcome to our life , yeah .
But back to you know the changes .
Well , yeah , the weather changes , so okay . So how are you doing with the weather changes you ?
know , for me , weather is one of my big triggers , like any change and for some reason , where we live in Arizona , obviously obviously like 30 , 99 . I'm echoing .
I can't hear an echo .
Okay , let me see if it's , it's good , no we're good . Sorry , I the changes here . It gets so cool . It can be 30 in the 30s in the middle at night and then in the day it's up to the 70s . So it's like it fluctuates so much when it's changing from season to season that that's where it affects me .
It just yeah , wears me down .
¶ Sleep and Self-Care for Chronic Illness
You're living the desert life , yes .
And I live right where it doesn't steady . I'm like right between the cold and the hot .
See , and I used to live on the desert side of Washington , but we get a lot colder than you and we would get . We would get snow sometimes and ice and a lot of wind . Yeah , oh gosh , we would get so cold . So we'd also get 116 degree days in the middle of summer too . Yeah .
So since we moved over here closer to the ocean and now , for those of you listening , I live in the Pacific Northwest , north of Portland .
It's beautiful , but it's now rainy season , yes , and what I noticed last year , and it kind of happened again a few weeks ago , is when rainy season starts to hit over here , it's the fact that one day it's it's cold , and the next day it's warm , and the next day it's cold and next . And so every time we fluctuate it just throws my body off . Same .
But I noticed that once it gets into just rainy season , slash winter , we're steady and my body calms down . My body just can't seem to handle the up and down it doesn't like I do .
my body does not like the in between the seasons , when it's going from summer to fall , I flare , fall to winter . It's just horrible .
What do you do for yourself when these kind of things happen ?
I have to slow down , like I just have to . I have to conserve more spoons because I don't have as many during those times I have to dress warmer , like I might dress up and ricks and shorts , but it keeps my joints warm when it's cool and resting . I know people think you know we shouldn't be taking naps .
I take a nap every now and then because it kind of just recharges me . I'm sure there's a lot of Spoonies that do that like a power nap and I feel better and I take B12 . I take more vitamins when I'm down .
I take B12 . Have you seen the chart that Cheryl Crow from my mind just went from arthritis life . Yes , she has okay , and it's talking about like rating the importance of what you need .
And it's interesting because you go and you look at the graphics of of what some of the people came up with and some people feel they need more sleep and I think that's what we , what we feel and what we need is so individualized . We could have the same illness but we could also be so different .
Exactly and and what works for me might not work for you . Like I , I just have to like get more centered , like I have to slow down , like that's my biggest thing I get . But then I feel guilty for slowing down . And when I take a nap I feel guilty for taking a nap because you know that's tough with the disease rate that .
I guess that is something I'm struggling with . I go through the grief process of my diseases .
So here's the thing that I've noticed sleep is so important . And I don't think I had such an idea about how valuable it was .
Like I mean , yeah , sleep is important , we all know that , but I don't think I had my head wrapped around how seriously important it was for me because I wasn't sleeping well due to all the stress that was going on in my personal life and I just worry about our kids and stuff like that .
Yeah , normal , I mean , they're grown kids , yeah , but we still worry about them , exactly . And so I wasn't sleeping and my anxiety was out of control . Oh , mine's so bad right now . So what's interesting is you might wanna get in there .
They doubled my dose of my antidepressant , and so I went from having to take my rescue anxiety meds a couple of times a week to I haven't taken one in several weeks now they just upped my .
They changed my antidepressant Okay , and then my anxiety medicine . I have to . I've had to use it . Normally , I use it maybe once , twice a week . I would take it the last couple of weeks and I haven't even told you this . I've been taking it almost every day . I've had this past weekend full blow panic attack , and it is it's about not getting enough sleep .
I'm not sleeping well , which in turns makes me more tired . It makes me more anxious , yeah , and then it makes me more anxious . It really , and I don't think I don't think there's anybody out there really telling us , as chronic illness people , how important our sleep is . Like I don't think even the doctors , like my new one .
She is all for , like she will help me , she's helping me try and get better sleep , but we don't have our doctors don't do that . They don't say that's a simple thing that we can do for ourselves that costs nothing . Yes , our doctors don't encourage it and I don't think we talk about it enough . How important our sleep is .
These moms are running ragged with RA and they need their rest so they can still be mom , exactly , and I'm glad , I'm actually kind of glad .
That's where this conversation went is because it is an important subject , because I know I took a three hour nap this morning , like that's and I to do this , to be able to talk to you today , and but that's why it's important to get it .
So you can get it . You also had a really big big , big difference .
Oh yes , I did I weigh , hmm , so you needed that now . Oh , Jen , I way overdid it , I I . How do you think ?
how do feeling ?
That's why I had to check on you I you know , and everybody needs a friend like you that can feel it , you like new and it just it warmed my heart and I told Rick I said she just knew and he and my husband just smiles because he knows how much I've needed that and needed that friend to just notice .
And I have another really good friend that if she would have been on the phone with me and just called out of the blue and she wouldn't know , she could have told , she could tell .
Well , and to me it's nice to have but yes , I overdid it . To me it's simple , like people should be able to notice cause okay ? So I called Linnea yesterday because I needed to drive to a town called Battleground where we were going to a movie with my husband's company and I was super excited , but I was also like I hate long drives .
I mean it's not in that long , it's 25 minutes , but whatever .
Yeah , no , and mine was . I had a 30 minute drive home too , so yeah .
So I called to just chat and next thing , I know you're telling me all the things you'd already done and the things you're about to do and I was like she's pushing herself too hard today because I know how rough you've been going the last few weeks and I was just like , oh my gosh , oh my gosh .
So as soon as I got out of this three hour long movie which it was really good , but three hour long movie- I called you on my way home and I was like girl , how you doing , Did you get home okay ?
I was close to tears but I didn't want to do that because my sister-in-law and brother-in-law were here and I struggled , letting my guard down and letting people , so I hid it how bad I was feeling and they left and it was like I just took this big sigh and it just came out like the tears , the pain , just the pain , like just really .
I don't know if you've ever done that where you just hold it in for so long but I didn't have it , but I enjoyed it . I enjoyed it because I just was able to get out and do something by myself and it's been a long time since I've just done that where I didn't need somebody to drive me because the pain was too much . But I did it for do it .
I did for do it . I way overdid it . I tried to do too much . You're gonna make me a deal . You're gonna make me a deal that instead of doing too long I don't know if I wanna make a deal when it's recorded .
There's video evidence . I'm gonna send a copy to your husband . So we're gonna make a deal and the deal is you're gonna do this for yourself more often , but in shorter amounts .
So you don't do this to yourself , because it's important to get out and do things that bring you happiness , enjoy and fill your cup , but at the same time you don't want it to fill your cup and then deplete everything out of you .
And it did that big time Like yeah .
Yeah . We're all adults yeah , I'm not gonna pretend to be the all-time wonderful , I do it all .
Yeah , we all do it , but yes , I need to like I just don't . I've gotten to where I've gotten very quiet again and you have noticed I have not been as visual on social media , which I'm working . Jen's been , jennifer's been helping me get back going but I think that's gonna help me . That's gonna help me mentally to get .
But I've gotta slow down when I go do stuff . I can't go overboard .
Yes , exactly . So what was I gonna say next ? Sorry , no , it's fine , it was there . And then I went boom , oh yeah , okay . So we don't have a whole lot of time left , because that's just how it goes . You could easily entertain you guys for hours . Yes , what would you say when you're struggling this time of year ?
What would be the piece of advice you would give to somebody ?
Just slow down , put yourself first . Do take care of you , because you cannot take care of anyone else if you are down and just slow down . We all need to just slow down just a little bit and take our naps .
Okay , exactly , exactly .
I hope that made sense . I'm kind of my brain fogs kind of hitting me .
No , you're doing great , you're doing great . My piece of advice would just be to remember and I probably say this time blue in the face , but I would tell people to remember that you have so much to offer , no matter what your circumstances are . You matter so much , and there's somebody out there that absolutely needs to hear from you .
They need to hear your story , they need to hear how you're getting through it . There's always somebody out there that can relate to us and they're further behind in what they're dealing with .
So somebody like you or I , who were further along in our journey , we can share with others Tips , tricks , gadgets , advice on how to stay positive , but also remind them we're not always going to be positive . Give ourselves some grace . So that would be where my advice goes .
I think we just have to this is something you tell me a lot and it's like it's drilled Give yourself grace . Remember to give yourself grace on those bad days . Remember that you are only human and it's okay , and it's okay to ask for help from your friends and family . I think that's the big thing .
Yeah , 100% . I'm trying to think of a fun , okay . So I did an interview earlier today with a friend of mine for her podcast and she did some would you rather things with me and that was kind of fun and I'm trying to think of some good ones to ask you , but my mind is just not working .
Not working , I guess , like Poppy Catter and ask you what she asked me , we'll go for it . It was something along those lines of oh gosh , what was it ?
Okay , can I ask you one Sure ? Would you rather not have your diseases or have your diseases ?
I mean obviously nobody wants it . But at the same time , it's made me who I am today and I feel like it's made me a better person . I'm more patient more understanding , I'm more compassionate . I think that without it I wouldn't be the friend that I am .
I wouldn't have thought to call you yesterday , I wouldn't think to mail people cards , I just wouldn't have . I think you know that's what I'm thinking . Yeah , when we're healthy , we live in this wonderful healthy bubble , right ? Yeah , and when you go through things you know it could be , and it could be for even people that are not ill .
It could be for someone that loses a family member .
Yeah .
It changes you . Yeah , and so these hard things , as awful as they are , things that happen to us in our lives , they make us better people , or they give us the opportunity to be better .
But I think it makes me . I'm with you as much as I hate my diseases and I'm so tired of being hurting and sick all the time . I would not have the friends I have , I would not have the community that I have and I would never have thought to make a video or do a podcast interview because I would never have gotten out of my bubble .
And in some ways I'm thankful for the disease Exactly , and that sounds probably weird , but I know , I feel like it's a great thing .
That's your point of view . Yeah , it's a great thing , but I don't think we can do that . I mean , I think I can tell you that I'm not in the best way , yeah , but I think a lot of people agree , because I think a lot of us .
I think , if they're called glimmers , we see the glimmers out there of all the beauty and all the positivity and we see the hope , yes , the possibilities , and so you know it's not always a bad day .
We stick together and check on each other .
Yes , and we create fun shirts .
Oh , I took mine off . I'm rolling with the punches . Now my T-shirt . I got warm .
Rolling with the punches . I know I'm kind of warm , but you look cute though
¶ Discussion on Hats and Trends
. I'm by my window and I have a hat on .
Yeah , but it's that I don't . I really wanted that hat out like last month and it was still 90 degrees . I wanted to wear my like car hot stockings because it was October .
So this is one of my favorite ones . I have two that are like this , and every time I try to wear them , my husband asks me what I spilled on my beanie . Because I love that , those colors . I love how it's like . It kind of looks like someone threw paint on and then watercolored it or something I don't know . I love it .
He thinks that I look like I wear hats that were spilled on , and I don't know if that means that he's officially getting old and doesn't understand trends and being . I'm just teasing him . We love him , we love him anyways Okay . So this was good , this was fun . I don't know what we're gonna talk about next time , but I don't know .
We're all over the place today . I don't know if we actually finished discussing everything we talked about in the beginning , but that's okay , cause we'll have another time , yep .
I agree , I think we got some .
I hope somebody gets something out of what we were talking about , even if it's just knowing that we're as crazy as they are dealing with these diseases Like 100% , and I will make sure in the show notes that I attach links so they can find and follow you and if for some reason you don't already follow me , I will attach a link for you to find and follow
me as well . Yes , please do . All right , my spoony sisters and I'm sure there are spoony brothers out there too , in fact we're gonna interview and share some spoony brothers pretty soon , but until then , don't forget your spoon .