Life Happens!

I finished Occupational & Physical Therapy back in December. Hooray! But, I still need to keep up with it at home which is easier said than done. So, I’m falling flat on that. Shame on me. Last couple of months I had a good excuse. I hurt my ankle somehow. Honestly, I have NO IDEA how it happened but I think the dogs were involved in the middle of the night. *sigh*

My doctor ordered my home health company to come out that night to do an x-ray of my ankle. It didn’t SHOW a break but it hurt! It hurt for 2 months. I’ve never broken a bone before and I want to keep that awesome streak alive! So, we’ll just say I sprained it. It’s feeling better now but it still aches every so often.

I’ve been using my Trilogy ventilator 24/7 for 14 months now. I’m doing well. I have good days and a few bad days mixed in. Today, I got my Trilogy swapped out with another Trilogy because it came with a modem that will send reports, from the machine, directly to my doctor who prescribed it. It runs on bluetooth. Isn’t technology great? Now, no one has to come to my house to pull a report from the Trilogy via USB and email it to my doctor. I’m usually seeing that doctor via Telehealth and only rarely do I need to show up in her office. I really like Telehealth doctor appointments. I also got a different mask to use and it’s making eating easier. I still have to use a straw to drink beverages though. I did buy a couple of straws that can be reused. One of them is steel and the other is hard plastic. I don’t use disposable ones because they would just end up in the landfill. Boo! But I do miss those flexi straws. =o)

It’s getting to be a pain to lug my trilogy and 2 oxygen portables every time I leave the house. It was funny (after the fact) when K and I were about to leave for an appointment, that we pretty much fumbled through getting me out the door. It is so crazy! I have switch my source of oxygen to use 2 portables with a splitter, change the Trilogy hose to a 6ft one (instead of a 10ft one) and then detach my Trilogy from the base to leave the house. K carries it all as we walk to our vehicle. The first time we did it, I knocked over my tumbler of ice water all over the floor because the hose caught onto it when K was lifting the machine. My dog, Willow, loved all the free ice that scattered all over the floor. We were in a rush. So, we grabbed whatever was close to mop it up. Never a dull moment. We are finally getting a routine down for when we have to go somewhere. YAY! K says that it looks like we actually know what we’re doing now. =o)

I’m pretty much a homebody though. I honestly look forward to days where K gets me out of the house. I feel like I live in a bubble within my home. I stay busy with crocheting, reading, playing Elvenar on the computer and watching our favorite tv show called Tournament of Champions (5th season!). If you like cooking, that show is a MUST see! It’s on Food Network!

I’m also learning something new. We are going SOLAR! I am very excited about this. We will never be without power again which is a relief because, you know…. life support equipment! There are so many details with getting Solar panels and a battery backup. It’s been a huge learning process… There are so many things involved such as homeowners insurance, power company changes, solar tax credit, and so much more. We’re still in the planning stages but it’s going to happen!

I hope you are doing well. *hugs*

UPDATE: Meeting Challenges Head On…

I’ve been wanting to talk about this subject for a time now. It’s made me feel quite overwhelmed. Life, lately, especially the past few weeks has felt chaotic. I got the results of my Annual Physical labwork back… my creatinine was off, my TSH was off and even my Iron was off. What does that mean? Adjust medication and retest the labwork. Ugh. 

I had a good talk with my doctors and the subject of Home Health (Physical & Occupational Therapy as well as Social Worker) was brought up again. This time, we were interested in getting the information to see what I qualify for and also to plan for the future. My health will decline more and it’s better to be prepared. It NEVER hurts to find out what’s available so that you can plan for the future. Better to be prepared than to be in the position where you need it immediately and not know what to do. 

Trust me. Since this is all new to K and me, getting all this information so fast is a bit overwhelming and slightly stressful. However, I’m handling it the best I can and I’m trying my best to stay optimistic throughout this new phase of my health adventure. When I feel down, I think of the roadtrip we’re going on soon to see my family. They always are a joy to see. 

One sister is throwing me a birthday party and the other took my rubber chicken, Birdee, to Cozumel! So how can I NOT be happy when I have a great support system. K has done all he can to help me cope with the changes in my health. He knows my life is hard but we do/change things to try to make it easier.

Taking a shower to wash my hair is ridiculously hard for me to do. If you are familiar with a Bipap and it’s mask that needs to be worn to use the machine, then you know that to wear the mask, you need the head gear to hold it in place. It’s the same thing to use a Trilogy machine. For me, I can’t take a shower without using my Trilogy machine. I want to stay as independent for as long as I can, so I invented a mouthpiece to use by putting together odds and ends of medical accessories. LOL! Even using this, it’s still hard because, to wash my hair, it uses a lot of upper body strength that I’m losing due to my cardiac and respiratory conditions. But, at least the head gear isn’t in my way of washing my hair with my new fandangle apparatus! Crazy awesome, isn’t it???

I don’t shower unless K is home in case he needs to help me out. If I’m in the shower, he stays in the house so he can hear me shout out if I need him. When the water is turned off, he asks if I’m ok. He’ll even help me get dried off or dressed if I need extra help but I’d rather do it myself to give me a sense of independence. The first couple of times I needed him were scary because I started turning bluish gray. Not sure who was more nervous about that between K and myself. I’m constantly thinking of different ways to do things that are hard for me. I have a 10ft hose that I use with my Trilogy. The DME only gave me a 6ft hose which was ridiculous because how was I to be able to park my Trilogy in my kitchen and fix dinner while just using 6 feet of hose to move around? So I got a 10ft hose from Amazon and presto, I became mobile! Much better.

So this week has been incredibly challenging for me. I’ve been so stressed out with people coming over doing evaluations and setting up appointments. I’m not used to so many people coming into my home. Every time someone comes over, I have to lock my pups in a room which of course makes me short of breath. But I’m going to give this Physical/Occupational therapy a try in hopes they can help increase my endurance and maintain, or even improve, the level of my health. Tomorrow, Saturday, is the first day this week that I don’t have to get up early or expect anyone to show up. This girl is sleeping in! I’m just so tired. *snore* Oh hey! Where was I? Oh, yeah….

Eventually, I’ll need care that’s not covered by insurance. It’s better to research that now than to be uninformed when that time comes. 

Not to worry though, I am resilient and I’m excited to see my family and I wonder who will be taking Birdee on her next World Traveler Adventure. One person has volunteered already but I don’t know when that vacation will be. So, I’ll let you know when I know! All I know is that my sister said she got some strange looks from a few people but she didn’t care because she was doing this for me. Awww…. *BIG HEART EMOJIS*

I hope all is well in your life. =o) Just to give you a heads up, I’m turning my blog into a ebook that will be in chronological order!! How exciting is that? I want it to be done with it by the holidays. YAY! *hugs* to you all!

Vacation without me

This is not the first time K has been on vacation without me. He once went with my family to Colorado for a week. That was back before we had cellphones. He had to call me on a payphone when they had stopped to camp. It was his first actual camping experience with a tent out in nature. He was a city boy that went camping. It was a true experience for him. He always says it’s not the same going somewhere without me because he wants to share the experience with me. He’s truly a sweetheart.

Last week, he went to see his extended family in Ohio. To make sure he went, it was an amazing feat of my family doing what they do when they’re called to action. The closer the departure date came to fly to Ohio, the more nervous K was about leaving me at home. He was tempted to stay home. So, I started planning.

As with any caregiver (or is it caretaker?), they need time to rest the emotions and rest the body from having to spend all their extra time (at least with us) taking care of the needs of their loved one (or friend, whatever it may be). Stress from being a caregiver (sorry, I’m going with ‘caregiver’. It just makes better sense to me.), builds and builds. If they don’t have an outlet or a place or an activity for just themselves to relieve stress, depression can set in and even still, it could happen. For you caregivers, I salute you for all you do to take care of the person you love and who needs you. Please try to take time for yourself in what’s called self-care and / or counseling.

I knew the dates that K was going to be gone. I had to get people to cover those dates or at least most of them. I realized if I could get most of the days that someone one was here checking on me, the better K would feel and the more likely he would go and enjoy his time in Ohio. So, I was able to get my BFF (M) to come over the next day after K left and she brought her son with her. We talked for 3 hours! It was fantastic! She asked what I needed help with and I asked her to please take out the trash and the wheel the trash bins to the curb. It was great because I didn’t think we would get them out before the trash people would come. GREAT JOB M & J!

M (my BFF) would text me nearly daily. She knew that my older sister was coming down too. My older sister is a take charge person and got a lot done. She fed the goldfish in our pond outside, made K and I sugar cookies (a batch and a half!), & made sure I was doing well. On Sunday, my younger sister came down who also helped a LOT. So while my older sister was still here, my younger sister held my Trilogy face mask to my face so that my older sister could cut my hair & I wouldn’t get tired from holding the mask. Talking about sisterly love and team work! Way to go SISSIES!

My older sister went home and my younger sister stayed. She and I binge-watch the first 2 seasons of Jack Ryan on AmazonPrime. I couldn’t believe she’d not heard of it before. *shock* FYI: Season 4 of Jack Ryan has been released! YAY! However, K doesn’t like binge-watching anything. He’s a savor-the-moment type person. Ugh! I’m so impatient! Though, there’s only 2 episodes out right now. We also made her favorite Chocolate Oatmeal Cookies to take home. She did all the hard work… including the constant stirring!

All throughout the time K was in Ohio, he would text and FaceTime me. I could tell he was having FUN. He was eating better and smiling more. He knew family & my friend were taking care of me. He even FaceTimed me on the 4th of July so I could watch the parade with him. Awww… it was EPIC!

I did try to wash my hair on Tuesday before my sister went home but I needed her help getting out of the shower again which was discouraging to me. I’m slowly gaining weight. K & I are frustrated because I have to rest more which means I don’t need as many calories. I have a sweet tooth. Now I have to be more careful to eat good food and less sweets. I’m internally crying over that. lol!

So, we’ll be discussing the weight gain with the doctors this month. In the next blog I post, I will discuss and show you what I’ve put together so that I can use my trilogy while showering. My original apparatus that I’ve pieced together works the best but I’m still tinkering with other ideas! I’ve even enlisted the help of my sisters to help me think of different ways to wash my hair. I want to be able to do it myself but if I need help with the hair washing, I want it to be easy for K to help. I will be trying a different idea tomorrow that involves K’s help. Wish us luck! I will not be defeated! =o)

The Next Step

My life has changed since I returned home from vacation. It has been very challenging. It crept up on me. I don’t think I did anything wrong to make everything change. I knew this was coming but I didn’t think it would be so abrupt.

I went from sleeping and napping with my Bipap, to needing my Bipap to drive down to South Padre where we vacationed. While on vacation, I used my Bipap when I made dinner. When I saw a Neuromuscular doctor during the Summer, the doctor suggested a Trilogy machine. At the time, I didn’t think I was ready for that but when I returned home from vacation, I was thinking differently.

I started out using a spare Bipap machine in our family room when I was sitting to watch tv during awake time. I would take it off to make dinner and clean the kitchen. While in the kitchen, I would have trouble breathing. I got short of breath and had to take breaks with my Bipap on. I was exhausted when I finished cooking and cleaning up dinner dishes. I really started to struggle as the next couple of months went by. It wasn’t until I was in the bathroom and had to call for my husband to come help me out of the shower.

Having to need K to help me out of the shower was scary for both of us. My skin was turning grayish blue and I was desperate to get back to my Bipap machine. I had my oxygen at 10LPM and that still wasn’t enough. I went from 8LPM to 10LPM within 2 months time.

Because of this rapid change in my breathing, I decided to go ahead and get the ball rolling on getting me a Trilogy machine. I have it now. It’s a little awkward having to need to wear the mask all the time. Since the respiratory tech didn’t have the hose and mask that I wanted, I use the same mask & 10ft hose as the ones I used with my Bipap. The ten foot hose is handy when I want to park my Trilogy-on-wheels in a central location of my kitchen. This allows me to walk all over the place in the kitchen, dining room and into the laundry room. It’s weird wearing my Bipap mask all the time and being connected to a machine on a IV-like pole that has wheels. I’m just glad that most of my house has wood and tile flooring. Rolling it on a rug take more effort and tires me.

So, now I get to look glamorous! I pretend I’m acting as if I’m doing a Mars exploration experiment. Earth is Mars! The Trilogy is part of my space suit equipment! haha!

Using this machine is not difficult. It’s just requires me to figure out how to do things differently. Now I’m having to drag around a pole and try hard not to get my canula twisted around it or myself wrapped up in tubing. The pole is pretty darn sturdy but having the oxygen tubing attached to the machine wasn’t working for me. So, I moved it back to my mask’s oxygen bleed-in tube. You can see it in the picture shown below.

My biggest hurdle right now is trying to figure out how to wash my hair. I can’t be in the shower without the trilogy on and the trilogy can’t get moisture inside it. I can’t shower with just oxygen on anymore. The last time I tried it was a disaster. Ugh! I got as far as washing my hair and I had to get out. *cue K running to help me*

I would like to hear from the people who use a Trilogy full time. How do you manage to wash your hair if you can’t take this mask off? If I can’t figure it out, I’m going to have to ask for help from K and I don’t want to add one more thing to his growing list of things to do. I want to be as independent as possible.

I had my first outing with my trilogy machine. We now have a lot of stuff hanging off my wheelchair. Two oxygen portables hang off the handle bars and the trilogy sits in my lap because we haven’t figured out a better way to transport it without K having to carry it. Leaving the house wearing it was awkward. I internally gave myself a pep talk once we exited our vehicle. People stare. I know that and it’s fine with me. I am still in that stage where I’m accepting this new phase of my life. I’m doing ok with it. It makes my life a little easier in the ways that I need it to. So, I’m thankful.

What matters is that I’m still alive and I can still smile. It’s hard to eat with this on and I have to use a straw to drink from a cup. But, hey! I’m still alive!!!! Hooray!


Trilogy Evo Machine

My new life’s adventure.