Navigating Life with Chronic Illness: Holly's Journey

But let's just dive in , alright , yeah , okay , so can you give us a little bit of an introduction and tell the listeners about yourself ? Sure ?

So about half of our kids are grown and mostly out of the house , so for some reason we keep replacing them with puppies . But yeah , and then I'm obviously on this chronic illness journey and yeah , it's just been a wild ride the last few years .

And I just chalked it up to getting older . You know , i was headed towards my 40s and it just happened . But at the same time I also had some weight I had put on that it didn't matter what we did . I couldn't get it off Like doctor led diet , you know , personal trainers , all sorts of stuff .

Well , all of a sudden , towards the end of 2019 , it just started like I just lost a big chunk of weight . Now I chalked it up to the fact that we were renovating the house so we could finally all move into one home . And if you ever are looking for a really good workout , find a house that you have to like , gut and then rebuild .

That will kick your butt . But I digress . So things were going pretty well , great , i had lost a couple pounds , but at the end of 2019 I started noticing that when I would sit down to eat . I couldn't . I was so full all the time .

I could take one bite of a chicken breast for the first time all day Only thing I've eaten and I would feel that horrible , uncomfortable full that many of us get after like Thanksgiving dinner , and it just kept piling on and piling on and it was .

There were days where I could not put something in my mouth and swallow it because I just still felt so full and we couldn't figure out what was going on . So at this point I was dropping weight in very unhealthy and not okay quantities , and by mid-February of 2020 , i was down to about just a little more than 90 pounds .

I hadn't been able to keep down any kind of food in a few weeks and was no longer even keeping down water , because at the beginning of 2020 it shifted . Not only could I not eat anything or drink anything , if I tried to , i got very , very sick , and when you don't have much in you , that's not a fun thing to have to do .

So on February 13th of 2020 , they put me in the hospital and I got my first feeding tube . It's a GJ tube , so I've got it's a combo . One part of it goes to my stomach , the other part goes to my jejunum , and what we figured out was that my stomach was paralyzed . It's called gastroparesis . Gastro being , your stomach parises , being paralyzed .

So that's why I couldn't eat , that's why I always felt full , because it would go to my stomach and then I would just sit there . Nothing would happen . So we had the gastric side of that tube , so if I wanted to drain or vent any pressure in there , and then I was fed through formula straight into my jejunum .

And if you don't know , the jejunum is that first part of your small intestine and that's actually where all your nutrients and vitamins and everything you need is actually absorbed . So your stomach does its thing , it puts it in there , it absorbs what it needs and then gets rid of everything else .

Well , the formula we were having fail after fail after fail , and so I ended up in the hospital for about 17 days because we couldn't really find a formula that worked And we weren't sure why . You know about a long time what felt like forever later we found out it's because not only is my stomach paralyzed , but most of my intestines are as well .

So while I can still swallow right now which I'm very lucky , for everything else in my digestive system just doesn't work .

So there's lots of diagnoses that go along with that , lots of things , but I am 100 percent formula fed And we're now discovering , over the last few years , all the things that are contributing to it , that are happening because of it autoimmune issues , nervous system issues , parts that are dying , that are you know .

It's been a hard road And after , unfortunately , the things that could probably help me most , i no longer qualify for . So it's this delicate balancing act of trying to stay alive And while most people were quarantined for you know 2020 and all the lockdowns , i'm still quarantined . I still since I got home from the hospital .

The only time I've left my house is hospital future . You know hospital visits And I did make it to like two other things very briefly , but because of my condition , i'm very , very susceptible to any germs at all , especially given some new treatment options we're trying right now .

Because you super enjoy being in the kitchen , you're passionate about it , you're good at it , you're great at sharing tips on how to be in the kitchen , but dealing with you know , your , your , your conditions and lack of energy , and I'm trying to figure out where we should even go from here . How about when I started ?

Nobody was really leaving anywhere And so I needed help and I got online and I was like , ok , i just never really big into the social media stuff Like I did general , basically browsing on Facebook . But when I left the hospital after 17 days I was handed my discharge papers and bye , that was it . I didn't know how to care for my stoma site .

I didn't know how to care for my tube . I barely knew how to set up my feeds , only just what I had watched the nurses do while I was in patient .

It was so bad , jen , that About two weeks after I got out of the hospital we were carrying me into a doctor's office where they almost turned me away , except for the fact that the doctor was like no , no , no , we need to see her because I had a low grade fever .

But when you first get it in , they put these little buttons on your skin around it , so your body gets used to holding it on there , and no one told me that those should dissolve and fall off . So here I am , trying so hard to keep them clean and keep them attached and do all this stuff .

I ended up with a horrific infection And emergency surgery and all this stuff because I didn't know what to do .

So I did start getting online and I started realizing and finding , oh my gosh , there are all these groups out here of people that are going through this And , even though we have all been warned , online support groups are horrible , they're so negative , they're this and they're that And , honestly , that's all of my experience had ever been .

But it had the exact opposite experience with the chronic illness community . They were so welcoming and they were so fantastic And that's how I learned everything about taking care of my tube , about what I should be asking my doctor . I had no clue , and add that to the fact that now I'm trapped in my house I have nothing to do . I was like you know what ?

I think I want to start talking online about this kind of journey , but I also want to talk about something that wasn't available when I started . There was no one talking about blended families And I didn't really know any of them when I was going through it .

You can find a lot of blended family accounts or information where it was one of them brought kids in and then they had like an hour's kids after that , or they both had their own kids , but they were a lot older And soon , or you know we're already out of the house , things like that .

He came in with five , i came in with two And there was going to be no hours baby And nobody was talking about that dynamic and trying to parent two different sets of kids in two different parenting methods in the same house . So what were the age differences between the kids ?

Mine were actually three , four and five when we got together And my daughter is right in the middle , and so I can still relate And I think I wish that there would have been information and other people out there to talk to about this kind of stuff , and especially as we get into the whole chronic illness life , because now you're trying to be there for , you

know , a spouse and children and making life work , blended together and take care of yourself altogether .

I can get online and I can start talking about this with other people , and that's where the name kind of well , blended life , because what I want to talk about was blended families and cooking and food and things like that , and then add in the chronic illness stuff a little bit as well .

However , after a short period of time , i decided that that was not what I wanted to talk about And , even though I still think that's a very important thing to talk about , i had to shift And the reason is that I had kids and step kids that , yes , they were of the age to consent to me talking about them .

Because of the dynamics of our family , how you know they came to be in our family , all that stuff . I didn't feel like they were really mature enough or understand well enough what that kind of consent meant .

But internet never forget And I would never want something I said to cause them harm now or down the road , and so I stepped back from that a little bit and instead decided do you know what I do need to talk about , though ? I was on the practical side of parenting teens and those little young baby adults , because nobody's talking about that .

I didn't know that when your kid turns 18 , they can check themselves out of high school , call themselves out of high school , they can tell the school not to give you any information , and they can even withdraw from school without your permission , or the fact that , now that they're 18 , even if it's your insurance policy there on , the insurance company will no

longer talk to you . They have to talk to your kid , but I don't know about you . I don't want to talk to the insurance company . They confuse me and I'm in my 40s . My 18 year old doesn't need to be dealing with that . So I found out that there's these forms and these things , that steps we could take to help with all that . Nobody talked about that .

Nobody talked about the fact that , oh , okay , when they leave for school , that's one thing , but when they come back , we have to have a pretty serious conversation and a very open conversation about .

You know , that was your life there , this is your life here and we have to find something we agree on So that well blended life seems to be a little bit more of what my well blended life looks like .

Right now We're dealing with older teens and tweens trying to raise these young adults without them feeling like we're still parenting them like they're little kids .

I spend a lot of time in the kitchen , so I'm sharing that , and I'm sharing more and more about the chronic illness side , because I still don't see some of the stuff that I've had to go through on here , and it actually took me almost dying twice .

My family got the call to gather twice for me to say , oh my God , had I known X , y and Z , i might not have been in this situation . So even though I can't eat and it is torture at times I still love to cook . So I figure the other thing we all need is way to save money , time and energy .

Whether you're a spoonie or not , those are the three things everyone's looking to get a little bit extra up . That's what I focus on And that's why I'm out here . That's why I talk about things , because that practical side of parenting is just as important as the emotional side .

I mean , everyone talks about being an empty nester , but nobody talks about what that means legally or what that means with your car , that your kid has or whatever .

And it has brought me frustration and joy talking about all of this , but I figure , even if it's not reaching , you know , millions of people , if it just even helps a handful of people , that's a purpose And that is why I had to start talking .

I'm sitting here in my home , not allowed or really physically able to do much , but it can share stories and I can share information . So that gave me a purpose which , as you know , when you're first going through all that and or it's really bad a purpose , is the only thing keeping you hanging on .

That doesn't mean we don't grieve We definitely grieve the life we have and the life we saw a future as , but we need to find that new purpose of what we have to offer , because we do . We have so much to offer .

It's just finding out how to do it , how to share it , where our skills are And I love the fact that you're taking this knowledge and the skill set that you have to be there for others And , at the end of the day , i'd rather help three people out there than get a million likes on a video .

But I started a little series and it's called Chronic Illness and Disability 101 . And I named it that because it's all I'm trying to talk about , all those basics , the little things that nobody told me about . Nobody taught me about And there's not a lot of information out there about it .

So , for instance , the last episode I did , i created a reference guide and that guide has so much information and it's chock full of nothing but links directly to health . You know , if you're having trouble with your medication , go to one of these resources and they'll help you .

If you need financial help , click on one of these links and it takes you right to the page where you can apply . You know , if you need . Here is what a standard pain scale looks like when you go to the hospital , but here's what a chronic illness pain scale looks like .

So understand the difference so you can translate it for your doctor , like all of these things that you know . Where can you find formula ? How can you get help with that ? Where can you find an advocate that can speak for you ? These are things that I wish I had had access to , in fact , as I was putting this together , someone that I now in that guide .

I could add a million more things , but I was trying to stick it only with things that I personally used or someone that I know really well has personally used , and one of the things that a friend of mine sent me . It was a medication resource Two of my medications that were charged , or there were three of them .

Between just those three , it was costing $250 a month And when you take 24 to 25 pills a day , it adds up . Those three prescriptions now cost me $25 a month from the resource that she gave me for me to put in there . I was like , oh my gosh , why have I been spending $250 for two years when I could have been spending 25 ?

And with stuff like that that I just try and get out there all the recipes , i do everything . I have kind of a standard version and an accessible version . So my last episode that was actually about my birthday and why I've lied about my age for so long , and it's not what everybody thinks .

Everything totally different was actually a really weird episode to produce or to create and write . I was having my own aha moments as I was talking . You have to watch the video . You see me kind of go . Oh , at the end of that , i shared this lemon pound cake recipe that my family loves , so I shared it .

But I'm like , okay , if you don't have the energy to do that , make these few substitutions and it's going to taste just as good , but it's going to take about half the amount of energy . So that's what I do . That's why I do those things , because I know for me , i need those breaks .

I got to find ways to save my energy , save my time and save my money And , the way I see it , that's what most of us Spoonies and chronic illness fires need , or Mamas need , absolutely Okay .

I have a couple of them , i actually have two of them . There are those like utility little carts . A lot of hairdressers have them that have the three shelves .

So I have two of them , one that I take in and out every day and it's got like my computer and pens and pencils or bills that I work on , so that it can go with me wherever I am in the room and I don't have to carry the weight of it on wheels .

Then I keep another one in my pantry , so when it's time to cook something , everything goes on there from my pantry and then I just wheel it into the kitchen . So again , i don't have to carry everything and that reduction of weight makes a big difference . That's , you know . I saved number two . That's probably the second one .

Oh , third one Big giant ice pack . It looks like a sheet of paper because I didn't want one . That was like overcoming . But I get treatments now that make my stomach swell and stuff and it's perfect Lightweight . You can kind of put it over your whole belly and that has been a life saver .

And then the other two , i would probably say , are also about cooking . One I just got a new chair , actually for my birthday . I have talked about it many times on my page and blog Sit down while you're cooking , you're going to save a lot of energy . Well , dragging around those heavy , big bar stools is exhausting and that kind of defeats the purpose .

We found a drafting chair on wheels , so I am up as high and I can even go a little higher than a standard bar stool , so I can be the same height as I am when I'm standing , while I'm sitting . And it's got wheels So I could just wheel around the kitchen . Now I could do everything sitting down . It's amazing .

And then the other thing is my food processor . Chopping , cutting all of that stuff is exhausting . You don't think it does , but it will take a lot out of you . Being able to just throw it in a machine , hit a button and it takes two seconds , is a life saver . How proud of that . I think those would probably be my top five .

Oh , i'm sorry I'm going to give you one bonus one Find a really good like catch all bag , because again , for me carrying things and weight is difficult , it's very draining .

So when I go to bed at night , i want certain things with me , or if I need to take something downstairs , it all goes into my catch all bag and I can take it back and forth easily .

So taking my notebook back and forth or I forget , or I have this or that , so being able to just throw it in a bag is a big help . But if you don't have a bedside table , that's like right there those pouches are fantastic .

I wear pretty thick mask most of the time , but this is what I would tell someone if they were starting out , and these are the things that I keep trying to tell myself find purpose and focus on it And remember that that is something that you're being a helper .

And when all of this kind of stuff happened to any of us , it's the shit hitting the fan for us , and I don't remember if it's Dr Seuss or Mr Rogers that said it , but in times of tragedy , look for the helper . Don't look at the tragedy . look for the helpers . And if you can focus on your own purpose , find it and focus on it . that is your helper .

that will help you immensely . So have someone in your life that you can vent to . for me , it's my home health nurse . Honestly , he comes twice a week and I just and I would probably say the third one is something that my counselor actually recently brought up to me . It's called self compassion finding ways to forgive yourself for all of that .

Personally , i suck at this and I am nowhere near being able to do this , but I do have that phrase on a sticky note pretty much all over my house trying to figure out how to give myself that little bit of compassion .

And finally , the only other thing I would say is this life is incredibly lonely and incredibly hard , but you don't have to do it alone , even if you can't leave the house . I can't drive , i can't leave the house , i can't be around people . it's awful .

My quality of life is like next to zero right now , except for the fact that I have these amazing , wonderful people online that see me still as a person and who understand it , because it doesn't matter what your counselor , your family , your friends say . they can empathize to a point , but nobody gets it unless they get it .

And , honestly , we don't want anyone in our life to get it , because then that's what they've got . So get online , reach out somewhere , find some people that get it , because that is going to take that lonely factor from drowning you to where you can still tread water .

It's actually just like the story I told you about the buttons we don't know what we don't know because nobody says like oh , these are the things you should know about .

They weren't prepared for what was happening and because they probably didn't want to keep you there too long and expose you to anything else , plus the stress that they were under , somehow the ball got dropped and that's not okay . But I think we also have compassion for stuff like that , because I wouldn't want to be in their shoes either .

They weren't doing with a lot .

And I just crumpled to the floor and was crying and one of the office girls go wait a minute she , i'm pretty sure I know who she is , let me go talk to the doctor real quick . And they came back out and put me right in a room And that guy was like Holly , it's okay , i'm sure it's not that bad .

He lifted my shirt , he goes oh God , holly , i'm sorry . And he even like kind of leaned down , gave me like a half hug and Bob was in the room and he was all upset and it was just the doctor was like I'm so sorry , it shouldn't have been like this . And he got me in for surgery right away and all sorts of stuff .

But yeah , i try and be very Just . You know what ? Everything was slower .

Yes , i am at you know three and a half years dealing with this , but that first year it was just kind of hanging on for dear life because it was too serious It was a lot And those , yeah , And it just broke my heart Because even in 2021 , when I , at the beginning , when I was hospitalized , I talked to some of the nurses and they were still I mean ,

they're still dealing with trauma .

You and I kind of started accounts around the same time And we focused on different things And I obviously pivoted and shifted a lot . But when it came to finding purpose or finding joy in things , i always went to your account because it could help me find those silver linings when I just felt like it was I couldn't even see the clouds .

I know I have a couple other accounts and I'm drawing a blank . Can I give them to you for you to include in the ? Oh , absolutely .

The next episode is about medical advocacy . How do you do it ? How do you push through ? There's one on feeding tubes , like it's just going to break it down to being everything you may need to know if you're starting out on your .

I just I feel honored that you trust me with it and , gosh , I have to have you back on again so we can talk more , because I know we could talk for hours and hours about all the things . But thank you so much . Thanks , Jen And listeners , until next time . don't forget your spoon .