I made my channel to help spread awareness for Ehlers Danlos Syndrome and other rare disorders. It takes an average of 10-12 years to get a diagnosis of Ehlers Danlos Syndrome! I am still new to RU-vid and figuring things out, but I will be discussing things like feeding tube cares, port cares, IV fluids, and day to day activities with chronic illness. I will discuss each of my illnesses separately and highlight the cares for those illnesses. I want to connect to my viewers on a personal level as well. There is not only the physical side of illness but the emotional side as well. If I can ease anyone's fear of the unknown than I take that as a win! Alongside of my illnesses I also have a job as a nurse, and I own my own photography studio. I also love how doing projects around the house when I am able. I would love to make some fun videos on that as well to show that we can still do the things we love, we may just have to modify it a bit. I hope you join me!
I feel bad for not checking in on you. You have been on my thoughts a lot though. I’ve gotten to where I just run my drip while I sleep @100 on the dial a flow tubing. I set it up at 8pm (or as close as possible) once I get over the drip sleepies (I’m doing better on ringers than just saline) on ad side nite, I think we have the same colored walls.
No worries for not checking in. I know how much having a chronic illness takes over your life. I have been terrible about posting lately. I am glad that the ringers is working better for you. I have thought about getting switched to ringers but I do well on saline and I don't want to switch up something that is working. If you know, you know. lol! That is too funny about the walls! I started painting some of my rooms different colors but the main area is all that creamish color. How have your kids been?
@@paintedbystripes4033 Good. We bought a lake house and their room is finished finally (we added one so when grandparents came they had their own space) we just need them to disconnect a little more often and get out of the house. They’re both very introverted children, so they are perfectly fine being in their rooms and never coming out except to eat, lol. They’re the complete opposite of Chad and I. Although I don’t have a choice anymore, before I got really sick I really liked getting out and going and doing things and getting out of the house. I’m extremely extroverted, except when I’m not lol. I do need my alone time to recharge, even before I got sick. How are yours doing? And I get it the rest of my house is white. My daughter is an artist so I have art of hers around the house so I prefer to have white walls. You can ask for a seven day supply of ringers and just see how it goes. I would only do it on days where you don’t have much going on though because they will knock you out. I would suggest doing it while you sleep. Even takes a little bit to wake up from them. However what I have noticed by adding ringers is that my heart rate is better and it’s not nearly as jumpy as it used to be. I use saline during the day when I need a second bag, which is actually quite often living in Texas and being in peri-menopause with hyperPOTS, lol. The sweating is for real. My blood work has also come back a lot better since I started adding ringers more often. my doctor has it pulled every two weeks and by adding the ringers my electrolytes have gotten a lot better and more stable, which probably explains why my heart isn’t nearly as jumpy as it used to be. We are still playing around with it a little bit. Especially now that it’s cooling off here because I don’t need quite as many electrolytes because I’m not sweating as bad. So now I am alternating ringers and saline every night and then if I need a second bag, it’s saline. Sorry if this is off a little bit, I’m using voice to text.
Oh no! I hope everything is okay with you and your family. I’m not sure how many videos I’ve put out lately. Things have been crazy here. Thanks for checking in! It is always great hearing from you. ❤
Good luck girlie. Sorry I’ve been absent. Going thru a thing. Anywho~~just wanted to check in and see how you were doing. I’m going to play catch up tomorrow on your vids.
He did have pneumonia. He's doing better now but still has a lingering cough. They think he might have asthma that was exacerbated by the pneumonia. We did oral and inhaled steroids, and he did better for a little while but now is coughing worse. We are off to the doctor again tomorrow.
Getting my kitties is the best thing I could have done. They are so sweet and a little spicy. The whole family loves them! All cats are amazing! Do you have cats?
@@paintedbystripes4033 , I have the Sweetest Cfa Persian who is a red white partia and he can talk ! My Boys name is “Prince of Persia and He is called Prince ) or other sweet names - Thank you for the reply . I am blind and vEDS & and you know the other horrible things that us 🦓 ZEBRAS 🦓 deal with . Pray for me please -My hearts in danger as well . I will try to listen to some of your videos Hugs to you !
@@memesissydollar3080 I love his name! I am so sorry that you have vEDS. That must be very scary for you. It is very difficult to have Ehlers-Danlos and everything that goes on with it. I will definitely keep you in my thoughts and prayers. Hugs to you as well!
If you saw my bathroom, you’d be appalled 😂. Eventually I’ll get there. I’m glad your daughter is safe. It’s so scary when they start driving. When my daughter’s learners permit came in, my husband just stopped in his tracks and said “I think this is the most frightening thing I’ve ever seen” 😂. How is the cyst going?
I'm sure that your bathroom is just fine! It is very scary when they start driving, I agree with your husband. I am so grateful that she was okay. We removed the JP drain, it was very painful and irritated and was no longer draining. Unfortunately, I had an MRI before they pulled it out and it showed that the cyst was growing again. The pain is somewhat better but worsening by the day. I am waiting to hear back on what the next step is. ugh. Thank you so much for checking on me. I appreciate it.
@@paintedbystripes4033 I’m so sorry. Hopefully the next doctor will surgically remove it. If not, I bet the one in the Woodlands will. I’m crossing my fingers for you.
Thank you so much! ❤ I appreciate it so much. My daughter is doing great. Thanks to airbags she only ended up with a few bumps and abrasions. The other driver had no injuries either. Thank goodness.
You are very welcome! ❤ I am an open book. If you have questions please feel free to reach out. I’m glad that you were able to diagnosis. That can be difficult for sure.
Thank you for checking on me. The doctor removed the JP drain. The site looked bad and the tube was no longer in the pocket of fluid. Unfortunately, the pocket of fluid has returned. The surgeon wants me to increase activity and see how the pain is doing. His hope is it will shrink on its own however, I don’t think that will be the case. I think I’m going to end up following up with a specialist 6 hours away. I hope that all is well with you and your kids. ❤
@@paintedbystripes4033 oh I’m so sorry. I wish I had some words of wisdom or something more comforting than hang in there. It’s ok to be angry, sad, or whatever emotions come to you right now. You’ve earned that right. I really hope this specialist has the magic solution because it’s enough. You’ve been passed around far too much at this point.
How do you infuse fluids when you’re on the go since it’s gravity fed? I have to take my kiddo to the doctor and I’ll need to be infusing during that time because it’s in the middle of the day.
I either hook the top of the IV bag on the clothes hanger hook in the car or carefully roll up the very top in the window. It tends to run slower since it is not very high from my body, so on this trip, I squeezed the bag with my hands for part of it so the fluids would be done when I got to the city we were traveling to. You could also get a manual blood pressure cuff and pump that up a bit to increase the rate if need be. If you run the fluids slowly normally the other tricks should be fine without the extra squeeze.
Thank you for this btw. I didn’t know I had to have a tubing connector and I’m stuck and going to have to cut the line off and change out the needle. They don’t have any nurses available today to change it out. Soooo, I’m going to try and access myself. 🤞🏻🤞🏻🤞🏻🙏🏻🙏🏻🙏🏻
Oh no! I am sure you did great! I just like to walk through the steps in my head before I access myself. Ideally, I have someone close by just in case I need something done that they can help with but still be nonsterile. That way I can stay sterile and don't waste supplies or break my sterile field.
@@paintedbystripes4033 I did ok. But something keeps happening in my sleep where the needle gets dislodged or something, even when the nurses do it. I ordered larger needles, so hopefully that helps. I’ve been getting 3/4” from home health med supplies so I ordered 1”. Also, my skin is RAW from the dressing. Any tips? I ordered some Tegaderm with CHG gel in them on my own through an online med supply store so hopefully that changes things.
The one that the feeding tube supply company gave me was huge and heavy! I was under weight at the time and thought it would tip me over! I ordered two of these off Amazon. I think that they are actually kids' backpacks they fit everything. Even the two bags that I have for my feed and flush. I follow another girl on IG and she just uses a regular purse-type backpack and just throws everything in. I will see if I can paste the link
It says they are out of stock but this is the title of them. Kangaroo Joey Bag For Feeding Pumps - Kangaroo Backpack For Enteral Feeding Pump - 500mL or 1000mL, Navy
@@paintedbystripes4033 yeah. There’s a lot of guilt in that but like me, they embrace their weird as just a part of who they are. The good thing is I was able to get them dx early enough to not do the stupid things I didn’t know I wasn’t supposed to do, like heavy weight lifting, running on injuries, etc. I’ve taught them how to live life but safely so their body isn’t where mine is at 50. Menopause wreaks havoc on ERSers. I do know I wouldn’t have had kids had I been dx before I had them but I cannot imagine my life without the weirdos 💕🤣
@@jennifermcmillan9518 Kids are so resilient! I love that they can adapt so easy. I am not looking forward to menopause. I was worried that the hormonal changes would wreak havoc on EDSers. I hate to think about having to make a choice whether or not to have my kids.
@@paintedbystripes4033 it does, you start hyper dislocating because of the estrogen surges. Then when it’s low, your pain is high. I think it was menopause that caused the need for the port because we already deal with Hyperhydrosis, then the hot flashes and night sweats get worse. But, you’re already on a saline drip. Dr Kelly just added a lactated ringer to mine (hyperPOTS) to keep my blood pressure under control on the days I need the second bag. Yeah, I’m connected all day, but I got an IV pole for my wheelchair so that I wouldn’t be house bound. And ETSY has really cute IV bag covers so my prescription isn’t seen by everyone. Just gotta find new ways to do old things. I’ll take infusing on the go to being bed bound like I was any day.
Your story is exacting what I've been through for years. It's taken a toll on me physically and mentally. I'm finally scheduled for surgery on 6/7/24. Three surgeons (GYN ONCOLOGIST, GENERAL SURGEON, AND PLASTIC SURGERY) will perform my procedures all together at Barnes Jewish Hospital in STL, MO. I'll be having BSO, Hernia Repairs, and Fleur De Lis. Please don't give up...keep advocating for help/treatment. If they refuse have them to document their refusal to treat you. Thank you so much for sharing your story. It has helped me. Sending prayers that you'll get the help needed. How big is your PIC?
I can't even imagine going through this for years! I am so glad that you are having surgery soon! That is so great that you have a whole team lined up to help you. I am so glad that my sharing has helped you. That means the world to me! I advocated for a jp drain which I have in place now. They have removed so much fluid and it is still coming so I am worried that if they pull the drain it will just fill back up! Thank you for your prayers. My PIC was 15cm the last time they measured but in the last scan they didn't measure it instead they just said that it was growing. I will pray for a successful surgery for you and relief from your symptoms.
So, I emailed my doctor (who also has EDS) and she has a network of doctors she’s worked with. I explained how your current doctors are just kicking the can down the road and your issue. I will lyk if she has any suggestions for doctors. She’s amazing I don’t know where I’d be without her. I’m not sure if she is accepting new patients because she had to go strictly to telemedicine but if she has a doctor she know will help you she will definitely let me know.
Thank you so much for looking into that for me. I am sorry to hear that she has had to go to telemedicine but at least that option is there for her. Sometimes technology isn't so bad.
I’m fortunate to live in Texas. DFW kinda stinks with their doctors sometimes but Houston is amazing and I travel there regularly for EDS treatment and comorbidities. Fortunate Children’s in Dallas is good with weird so they’re great with my EDS kids.
I have had great luck with Dallas. I saw Dr. Suleman and the Heartbeat Clinic in Dallas and he helped me so much and sent me to other specialist in the area! With EDS you really do need someone who is comfortable with wierd!
I am in Wyoming. There are probably more people in Houston's airport at one time then in our entire state! That is why we travel so much for care. I actually had some surgeries and visits in the Dallas area. We have discussed the possibility of moving to the Houston or Dallas area because of the medical care. We just have all of our family and support system here.
I had just been promised that I would have the drain put in this last Thursday or Friday at the latest and that was not the case. The earliest they could do it would be Tuesday but that is without sedation, with sedation would be even further. I am just overwhelmed and tired of being in so much pain! Thank you for asking!
Thanks for the update! I'm experiencing the same thing you're dealing with. I'm having surgery on June 7th. How large are your inclusion and ovarian cysts? Praying you'll get some relief soon.
My inclusion cyst was 15cm at its largest dimension two scans ago. On my last scan they just said it was enlarging.. My ovarian cyst went from 6cm to 4cm so they are not worried about it. Thank you for the prayers. Good luck with your surgery! I hope that goes well and you have a fast recovery. I will be praying for you as well. Gentle hugs!
You don't even know how much your comment has touched me. It brought tears to my eyes. I try so hard to hide the pain, but as of late it has been so difficult. I really do feel like my life is falling apart. Thank you for sending the love. Sending it back from Wyoming.
@@sarayoumans9057 I have Ehlers-Danlos syndrome and a whole host of complications that go along with it and others that are not related. I have been sick most of my adult life. Are you chronically ill as well?
Holy cow. I’m sorry. I just watched this procedure online. Hopefully they’ll fix this for you. Don’t apologize for taking care of yourself. Everyone here is because they’re struggling too. I honestly don’t know how you’re doing the things you are even without the cyst issue. My body won’t even let me walk for 30 minutes right now. I completely understand the lack of purpose. I’ve felt that way since I got the bad cold that cannot be named because it threw my POTS into overdrive and put me in a wheelchair if I want to leave my house to have a nice day out, and even attempting that is tricky. You truly are an inspiration.
I think that I can do the things that I can. due to pure stubbornness. I worry that my other activities may be taking a toll on my body though. It may be time to make choices. I am so sorry to hear that your health has declined. I am heartbroken to see just how many people are struggling with chronic health conditions. Thank you for saying that I am an inspiration. I don't always see it because I only focus on what I can't do anymore. Maybe I need to switch up that thought too. You are an inspiration as well! POTS is a beast to navigate.
Very occasionally I do feel hunger pains. It is usually when my tube feedings have been done for a while. I know that it sounds weird since the tube bypasses my stomach, but that seems to be the case. I do crave food and miss eating especially when I am at get togethers with food.
@@paintedbystripes4033 I always wondered. If the hiatal hernia in the fall doesn’t fix some of my eating issues, I think this is where I might be headed. I can imagine the holidays would be the hardest. I understand that. We have really big parties here at our house 5-6 times a year and there have been times I couldn’t eat. Gatherings are always surrounded around food. I have just never had the courage to ask someone with a GI tube and you seemed open to questions. I appreciate you for doing that.
Anytime the weather changes, it doesn’t matter what, I’m grouchy. I’m in Texas so I actually look forward to summer because the pain lets up a bit but then my POTS goes, hallo, remember me from your showers and cooking dinner, and doing laundry? Well, I’m gonna be here everyday all day for 3-4 months.
Summer is the worst for POTS! It is so hard to stay hydrated in normal or cold temperatures but when the heat hits it is almost impossible. Then you get dilation of all of the blood vessels from the heat and ugh. Your stuck in bed!
