Thank you. Wishing you well too!

Thank you for your comment. It is definitely nice to know that you are seen.

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 !

Thank you. I appreciate it. ❤

Thought it may be relatable to some. ❤

Kinda crazy!

@@ladylotusinc yes for sure! Can I promise something like this won’t happen again? Maybe, maybe not 😂

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.

@@jennifermcmillan9518 thank you. I am hoping maybe there is a different drain to try first. We shall see.

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.

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!

Thanks 👍

@@paintedbystripes4033welcome

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.

Thank you so much for looking into this! If this tube doesn't work out, I will look into Dr. Eads! You are the best!

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

I am sorry to hear that. I hate that there is such a strong genetic component to this disorder!

@@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.

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.

Thank you so much! You'll be in my continued thoughts and prayers. You got this!! 💪🙏

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 will have to keep UCLA in mind as well. We are always open to travel if it means better quality of life!

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.

@@paintedbystripes4033 I understand.

It is the little things that can make a person's day!

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!

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!

Yes for sure!

Yes he does!

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.

Yes, for sure!

I would love a new friend. Friends are so hard to come by. Especially, as an adult and someone chronically ill.

I get it!! Chronically ill? What is going on?

@@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?

Thank you. That is very true!

Hey, my dad says work smarter not harder. We have to conserve our spoons after all.

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.

I just got my results today and I need to the gynecologist 😢

@@user-gioale I’m sorry. Hopefully the gyno will help you.

@@user-gioale I am so sorry to hear that. I hope that you get relief very quickly. Remember to always advocate for yourself! Sending prayers.

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.

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!

I totally agree that it is essential to sanity. Even though the things we say that is morbid may make us sound less sane.

@@paintedbystripes4033 that’s ok. I own my particular brand of crazy. I’m southern. We parade it on the front porch and give it sweet tea 🤣

@@jennifermcmillan9518 there is nothing wrong with that!🤣

Yes, for sure. Haha! How could I have forgotten those?

That is great to know! I will have to look into that. I use the no rinse shampoo and wipes when I am hospitalized but didn't think about it for home. Would be great for the flare days for sure! Sending gentle hugs!

That is a great trick! I will have to try it. I have never used tinted sunscreen. The tinted lip balm sounds great as well. My lips are so pale. Thank you for sharing!

Good question! In nursing school, we were taught to use regular masks. My home health follows the same protocol. N95s are generally only worn for airborne illnesses. The mask protects from droplets getting onto the sterile area. The caps are called Curos caps. I get mine from my medical supplier. Hope this helps.

@@paintedbystripes4033 perfect. Thank you. I get my first access on Sunday and I wanted to be prepared. I ordered 3 ply masks from Amazon, just to have something on hand. Good to know I can use them.

@@paintedbystripes4033 also, your channel has been invaluable for preparing for my port surgery and information about accessing. I’m still going to let them do it the first few times, because I’m a visual learner. However, watching your channel has made me much more confident that I can do it on my own pretty quickly. Honestly, I gotta figure it out because I’m going to Jamaica at the end of the month come he#$ or high water, lol.

They really are! I love them!

It really puts a cramp in my esthetic! 😂I’m just glad I can shut my closet door. Out of sight, out of mind. ❤