Category: everyday

  • Nov ’25

    Nov 7th – today’s the day! I saw Dr. L last week and he is basically waiting to see what Dr. G has to say. He seems to be quite a bit more concerned about me, but the last two visits I’ve been more concerned about myself. I think because I usually greet him with I’m ok when he asked how I’m doing and that hasn’t been the case the last two times. But all of the weight I lost earlier in the year I have gained back in just a few week period from the pulmonary hypertension and subsequent mild heart dysfunction so even though he says that I’m in the window for needing a transplant I’m now not a candidate because my BMI is too high. It’s just a vicious circle.

    I have another echocardiogram and unfortunately the results are back when I meet with Dr. G. She seems pleased with the results of the Tyvaso and diuretics so far but without the echo she can’t really give me any real prognosis, just stay the course and she will message me when she has the results.

    My benefit dinner is later that same day. WOW! Can I just say that people are amazing. We had such a great turn out. There wasn’t a parking space or a seat left in the place. People from all aspects of our lives, even a few people we didn’t even know. I can’t even express the amount of love and support I felt that night What I can say that between the GoFundMe and the money raised by this dinner has met almost 2/3 of the amount that the social worker at Cleveland Clinic told us to have on hand for transplant. I think I cried several times that night. Thank you again to anyone reading this that played any role in these at all. (I’ve tried several times to upload pictures from that night and it isn’t working, sorry)

    And the night ended with the best news! Dr G sent me a message that the echocardiogram showed improvement!

  • Fall ’25

    The Tyvaso came towards the beginning of the month and I had to have a nurse come show me how to use it, apparently it’s mandatory. It came the week before my siblings and I went to Tennessee. I was bound and determined that if they went again, I would join this time. I’m a little concerned that I won’t be able to do a lot of things and getting ready for a trip with all of my medications and oxygen now requires a lot of additional planning. My siblings and their spouses were so considerate of my limitations. They pretty much did whatever it was I felt I could do. Our first day was in Pigeon Forge, we went with no plans or expectations. We played putt-putt golf, which ate up a lot of our time when you think about 12 people playing. We ate at Margaritaville. I really wanted to do the Alcatraz crime museum but between the putt-putt and the walking I had enough for one day. I have several days ahead of me and don’t want to be a party pooper by exhausting myself the first day. The second day was Gatlinburg, we started at Skypark, they have a Skybridge that I wanted to mark off of my bucket list. It’s 680 ft across (the longest bridge of it’s type in North America) and 140 ft off the ground. We took the walkway to the one side and walked the Skybridge back. I did ok until about the last 200 ft or so when it becomes an incline. Inclines are almost impossible for me now and my concentrator just didn’t keep up with my needs. By the time I got to the other side I was so out of breath that it took a long time to recoup. It didn’t help that I had a mental breakdown. I was feeling so many emotions, I was proud of myself for doing it but also sad that I just can’t be “normal”. I was trying to regain my breath when my brother, G (Alpha) came to my side, he didn’t say anything, he didn’t have to, just his presence and support was all it took and I began to cry like a baby. Then others joined in to let me know that I wasn’t alone and I want to believe that they felt what I was feeling. I finally regain my composure after making a fool out of myself in public but Hey, I got a t-shirt out of it from G to remind me that “I did it”. As hard as it was, “I did it”. We have lunch at Dick’s Last Resort and I think we all had a great time. I would not suggest you go there unless you have a good sense of humor as the service is intentionally rude for entertainment purposes. By this time I am ready to return to our AirBandB but most of the others stayed and tried some Tennessee whiskey and did a haunted house. It’s a good thing I did return when I did because by evening my leg muscles were angry with me. I think I actually may have gone into a small case of rhabdomylosis because this wasn’t normal muscle aches, my leg muscles were rock hard and I could barely move them. Luckily the room that B and I got was the only one with a jet hot-tub. B helped me get in and out of it and it seemed to help some and then I downed 800 mg of Motrin. By morning I felt better but today is a day of rest. We do visit a small local store that sells Amish goods, did the Smoky Mountain Alpine coaster (secretly, I may have enjoyed this the most), ate at Boss Hogg’s BBQ shack and then went to a small antique shop. Most evenings are spent playing games or sitting on the porch. I don’t know about anyone else but I’m having a good time. Our last day we make the long trip to Cade’s Cove Scenic Loop, it’s part of the Great Smoky Mountains National Park. I have to say I was quite disappointed in my choice to do this. There was really only one part of it where I could actually get out a view more than one building of the old settlements but at least the driving views were cool, AND I got to see a bear down in the creek just as we were living thanks to B’s quick eyes or I would have missed it. We ate a Mexican food truck called Taqueria Macho Taco on the way back to our place. The evening brought a heart to heart with my big sis, B. She lives in Washington state and she’s the one that also has autoimmune disorders. I remember during our conversation I told her that “I’m not afraid of dying, it’s living my family behind. I don’t want to be the reason they feel grief and pain”. And it’s the truth. Dying doesn’t scare me, I know where I’m going. But when I think about them living life without me, that’s what brings the emotions.

    When we return it’s not long and my father needs to be admitted to the hospital. He’s very anemic and needs blood. They keep him for several days, do several tests and give him blood a few times. They really don’t have many answers and the only way to make a final diagnosis would require a bone marrow biopsy to see if his body isn’t producing any blood cells. He declines the test. The only other thing they are thinking is that his mechanical heart valves are basically shredding the cells when the blood goes thru them. The only treatment for that is surgery and he states he won’t do that either. Our family’s annual FallFest is coming up and we (the family) don’t want Dad to miss it as we know this will be his last. Luckily, things get arranged in time for him to be discharged and he is able to go. Another blessing from above.

    The next weekend brings about a change that I have been putting off for two years. Back when I was diagnosed B wanted to move me into a smaller place because our home and yard are just too much and getting me moved “in to town”, will get me closer to my girls and closer to the Cleveland Clinic. Well, I didn’t want to give up my home, so our son stayed behind and we rented a lower level apartment in the same building as my middle daughter, K. This was also a blessing in timing as K’s building stays pretty full as it only has 12 apartments and they go fast. Well right after my appointments in August she said that the bottom apartment was going to be available. This apartment just happens to be the closest one to the laundry area too! I’m telling you, I can’t make this stuff up. I believe this is the hand of God. Always moving things in to path just when I need them. On October 4th, I said goodbye to my home, tears streamed down my eyes. Looking back at it, that was silly because we still own it. I can still go sit on my back patio any time I want, but that day it felt like I was closing a large chapter of my life. But, I’m happy to say that B was right. The apartment is much more manageable for me, so now I don’t feel overwhelmed, I feel accomplished!

    Next up is my next round of appointments and a benefit dinner for me and my family to help alleviate some of the expenses we are about to incur. My middle daughter had already started a GoFundMe and her best friend is organizing the dinner. The dinner is planned for the evening of Nov. 7th, I will see the pulmonary hypertension specialist that morning. I hope I don’t get any bad news to damper the evening. Guess you will have to read the next post to find out.

  • Summer ’25

    You may have noticed that I skipped Spring ’25, not much happened during those three months so I didn’t feel that making a post just for the sake of making a post was necessary. Although I did get to celebrate another birthday. Just a little side note, I share my birthday with the first born in our family, my brother, G. I was born on his 17th birthday-what a birthday present, right?! In our family we are known as “Alpha and Omega”. The first and last letters of the Greek alphabet but in the Bible, Revelations 22:13 Jesus refers to himself as “I am the Alpha and Omega, the First and the Last, the Beginning and the End”. I guess my parents thought this was a good definition for us as we were the beginning and the end of the nine children God blessed them with.

    At the end of May I was able to see my oldest grandson, K graduate from high school. I remember two years ago just pleading with God that I would get to see that happen and He didn’t let me down. I can’t say that I’m not selfish and hope and pray that I can do the same for my other three grandchildren but I also try to be realistic about it – BUT with God all things are possible! (Matthew 19:26)

    The beginning of June brought K’s open house and I was so happy to be able to “help” as much as I could with my portable oxygen concentrator. That same weekend, we celebrated my oldest brother, G and his wife, M’s 50th wedding anniversary! It was a nice time and I got to spend it with my parents sitting across the table from me. My mom was hilarious that day, joking around and just making me smile and laugh so much. It’s a wonderful memory as my mother died just three days later. I will never forget that day for as long as I live. We had just gotten to the ballpark to watch our granddaughter, M’s softball game. We were getting our chairs set up when my phone rang. Because my hands were full I let it go to voicemail. Once I got settled I checked my phone and saw that it was my Dad calling. I listened to the voicemail and knew I needed to call him back. He was asking for me to come to the house because Mom wasn’t feeling well and he didn’t know what to do. I call him back and he describes what’s been going on, I tell him I’m on my way but it’s going to be 20-30 minutes. He tells my mom that I’m on my way. She got up and went to the bedroom – she died in her bed just before I got there but my Dad didn’t know it. But I knew as soon as I walked in to their home. I could feel it! And a little part of me believes that he knew it too. I went back to check on her and I remember standing at the open door of their bedroom. I knew instantly, and I felt sadness and relief at the same time. Sadness for me, my family but mostly for my dad but relief for my mom. She was no longer a prisoner to her failing mind and she has gone to be with the Lord, she’s in a better place than the rest of us. But nothing prepares you for having to tell your dad that his love is gone. He was getting so frail but he insisted on coming back to the room before I called 911. He gently rocked her, hoping she would wake up – I knew she wasn’t, I had already done it all – and then he sat next to her, hand on her hip and just cried, not loud, not wailing just quiet, deep seeded sorrow because I think he was feeling the same sadness yet relief that I felt.

    About two weeks after I have my next appointments in Cleveland, several days this time as I have my heart catheterization scheduled with this set of testing. If you remember, my echocardiogram back in February showed that the pulmonary hypertension had returned. The heart catheterization confirms this and I’m diagnosed with moderate pulmonary hypertension. Having pulmonary fibrosis and developing pulmonary hypertension is usually serious enough to get you put on the list for transplant but because I seem to be managing fairly the same Dr. L says that he will have me see a pulmonary hypertension specialist first as maybe there are some medications that can help. I’m scheduled to return in September.

    By August, I have gained about 10 pounds despite not changing anything and I’m having more shortness of breath, coughing. I see my local cardiologist, he placed me on Lasix every other day. I see my lung doctor a week later. He doesn’t like that I have to wait until September to see the specialist – he calls Cleveland Clinic transplant center, explains what he sees and they move me up to the end of August. When I return to Cleveland in August, the specialist, Dr. G, explains pulmonary hypertension and states that I’m already starting to have some issues developing in my heart from the additional strain. She places me on two new medications – another water pill, Spironolactone and an inhaler called Tyvaso. I recognize this medication as the original lung dr, Dr. V., mentioned this in his notes back in 2023. The Tyvaso has to have insurance approval so I will have to wait on it. In the meantime, I decide that maybe I should be paying more attention to my oxygen at work as I had become complacent in that area. My first day back to work after this and I can’t even maintain my oxygen levels long enough to get to the first patient room on the nursing unit. Time to discuss this with my manager. We decide that for now the best course of action is to change my assignment, I will work from the office from now on and I will no longer work my Sunday rotations as I can’t work them by myself anymore. I feel horrible that my coworkers are having to pick up my work. I think it’s time I start to think about going on leave.

  • Summer ’24

    I’m due to go back to Cleveland Clinic at the end of June, in the meantime, I’ve done all of my homework. I saw a gastroenterologist and had my colonoscopy but I also had an upper endoscopy and a stretching done as we discussed my issues with food sticking. During the endoscopy they found esophagitis with esophageal stricture – biopsy results came back with tissue consistent with Barrett’s esophagus. Both have been caused by severe chronic gastro-esophageal reflux disease (GERD). Because of this I have several tests related to GI issues scheduled this time around to see if I will need a feeding tube whenever I need my transplant, because if you remember my lung biopsy results, I’m aspirating – most likely at night from severe GERD. All of this is related to my auto-immune disorder – the one that I learned in school was basically dry eyes/dry mouth – yeah, maybe more teaching/research needs to be done on that!

    I have a follow up with my lung dr in April. I forgot to mention that in my last post. I’ve been having issues with the antifibrotic medicine, OFEV. I vomit almost every day with it, even if I take the protein they recommend, so we decrease the dose to half. We also trialed coming off of Prednisone since I have been on the CellCept and prednisone now for a year. The lung dr and I agree to try to eliminate the steroid. Then he tells me that in July he will be leaving the practice. My world seems to be crashing….the Dr. I’ve come to trust with my life is leaving the practice but he asks me which dr in the practice I would like and makes arrangements for that physician to take over my case. As much as I hate to see him leave, he’s young, intelligent and caring and the nurse tells me that he has a wonderful opportunity set before him – I don’t ask what that is but I know he well do great things for the next patient he cares for

    As far as the prednisone, Let me tell you, the withdrawal from that if awful. I was only on a small maintenance dose so we don’t wean off – I just stopped taking it. Three days without it and I’m already aching all over, weak, nauseated. By day 10, I’m an emotional mess, I’m crying at work, I’m crying at home, I feel very emotionally unstable. By the end of the second week, I’m also starting to have issues with my oxygen saturations and my ability to function without oxygen is declining. I’m finding myself needing it for things I haven’t needed it for in almost a year. I get in touch with my lung dr and he puts me back on the steroids, within a day I’m starting to feel more “normal”.

    My Cleveland Clinic appointments goes fairly well. The worst part was the GI tests, June 24th. There are two of them, an esophageal manometry test and a GI probe. The manometry test measures muscle pressure and coordination of the esophagus. A GI nurse placed a thin catheter thru my nose into my esophagus and then gives directions on when to swallow sips of water, not bad until she gets to the part of the test where I can’t swallow for like 15 or 30 seconds, I can’t remember the exact length of time now. You would think that isn’t hard to do, just don’t swallow for 15 – 30 seconds right – wrong, not so easy for someone who coughs like 200 times a day and it’s an automatic reflex for me when I feel a cough coming on. The nurse gets extremely upset with me and says “It’s just a mind over matter kind of test”! No kidding! I’m seriously trying lady. It isn’t until I throw up all over myself and almost on her that I get any sympathy from her. That’s when she realized I really was trying and she aborts trying any more “episodes” and says she will just send what she has. Next comes the pH probe, this will monitor the acid levels in my esophagus for the next 18 hours or so. Again, the nurse placed another thin catheter in my nose and down my esophagus. This one will stay in until the morning when I remove it myself. The probe is attached to a monitor and I am given instructions to press a button every time I have reflux symptoms and I am to write down when/what I eat and drink. All of this information will be turned in to the GI department in the morning. This part isn’t too awful except for when I eat. I think that the end of the probe is either IN my stomach or very close because every time I eat it feels like my stomach is pulling the tube further in – it’s quite annoying and I keep pulling the tube back a little bit all night.

    The next morning, I return everything to the GI department and complete my normal transplant eval tests that I will complete every time I come, lab work, chest xray, blood gases, lung functions test, walk test and meet with the dr and nurse coordinator. Dr. L reviews the manometry test, I do have SOME issues with swallowing but he says it shouldn’t be a contraindication to getting a transplant but could affect post-op management, especially feeding strategy. Overall, I am stable and not reading for listing. I will come back in about 4 months and I will see a GI specialist (to discuss post op feeding needs) and an infectious disease dr then (this is just routine).

    July 20th, my family and I go to Pittsburg for the Pulmonary Fibrosis Foundation walk. I have been able to walk the distance so I am able to participate (I think my last post I wrote that it was 2 miles, it was only one – there was a 2 mile option but I wasn’t sure I could do that distance, it takes me half an hour just to do one! Having my family with me is just incredible, their love and support make me speechless. I would love to be able to do this again next year. There are many families there, some have lost loved ones to PF already, some are there because they had PF and now they have new lungs, some are like me and currently have PF. One lady sought me out though and asked me about my situation. She had just lost her husband to idiopathic PF a few months before the walk, she was there with her granddaughters and walking in his honor. She was such a sweet lady – she showed me such compassion all while expressing her own grief. Some humans just amaze me, and she doesn’t know it, but she left such a mark on my heart, I will never forget her.

  • Spring ’24

    Spring is both a time of sadness yet a new found appreciation for God and his creation for me. After my initial evaluation for transplant I slip into a depression, morning drives to work are the worst because I am alone and it is silent, a deafening silent where all I can here are my negative thoughts and many drives are spent filled with tears from the moment I leave my driveway. I notice that I have to change my mindset or I am going to go to a very dark place, one from which I may not return so I start a Christian music station on my Pandora. I don’t listen to much Christian music other than at my parents’ home. I grew up with gospels and hymns in church but I haven’t been to church in over 15 years but there are a few artists I know about so I plug them in just for a start. Well, the more I listen, the more grateful I become, in spite of my situation. The more grateful I become the more I notice things to be grateful for. One particular morning as I’m driving to work I notice the trees are beginning to bud/bloom but I’ve never noticed the colors before, the pink and white blossoms were vibrant, almost glowing and the ground is speckled with purple and yellow from the early spring flowers, the sun is shining and this song begins to play and the lyrics just go through my soul (Good Day by Forrest Frank)

    “I’m ’bout to have a good day, no matter what they say, Sun is shining down on me, birds are singing praise. I’m ’bout to have a good day, in every single way. The God who made the universe knows me by my name so it’s a good day.”

    This is when I decide that I AM going to have a good day – despite my troubles and sadness – and I was going to find reasons to have more “good days” from here on out. And God didn’t disappoint – He gave me a solar eclipse in April and the northern lights in May. Once-in-a-lifetime events and He provided them for ME (and yes, that is how I felt then, I was a little self-centered). He was giving me opportunities to acknowledge and experience His creation. I don’t know the statistics on experiencing either of these events in a lifetime but I’m sure it’s rare – and I just got to experience them BOTH from my own yard in a two months span. If someone could crunch the numbers on the probability of that happening I would be very interested to know what it is.

    The rest of the spring is spent attending as much of my grandkids events as possible and signing up for the PFF walk in Pittsburg set for July with my family, so I start walking more and more because I want to WALK not just go. I need to be able to do 2 miles (I haven’t done more than 1 since last August). Friends and family have been so supportive and generous and have donated over $1000 to the PFF for ongoing research on behalf of my family team. As far as my grandkids’ events, there’s dance, softball and flag football. I just wanted to enjoy being a Nana – I may not be able to be the active Nana I wish I could be but that doesn’t take away my desire to be with them, encourage them, support them, love them. As a parent I was always too busy managing it all that I wasn’t enjoying it. God gave me a second chance through my grandkids so I’m going to sit back and enjoy this time around.

    I also celebrated another anniversary, another birthday and another Mother’s day. I remember how scared I was at this time last year that I wasn’t sure how many more of these I would get. I can’t say that I’m still not scared but it’s no longer at the forefront of my mind – now it’s more of a gentle reminder to enjoy each day and when I’m struggling to find something to enjoy to sit and REMEMBER. Remember the fear, the anxiety and how far I’ve come. Remember each struggle and how we adapted to overcome. Remember how family and friends supported and loved and cared for me. Remember to count my blessings for I already have so much to enjoy. (I will post the lyrics to another favorite of mine under the Faith tab, unless I can figure out how to post the actual song – which I doubt). I also tried to upload a video of the solar eclipse but it was too long and I don’t know what I’m doing,

  • Pulm fibrosis month

    September is Pulmonary Fibrosis awareness Month and although it’s not September when I’m actually writing this post, it is where I am in documenting my journey thus far so your stuck learning about it today. I’ll give some basic facts about pulmonary fibrosis, talk about the things I miss most, share some of my posts from that month from my online support groups and then challenge you to “breath like me”.

    Pulmonary – lung; fibrosis – scar tissue : so simplest definition is scarring of the lung. More than 250,000 Americans are living with PF and more than 50,000 cases are diagnosed annually. There are five categories of identifiable causes; enviromental, auto-immune, occupation, drug-induced and radiation induced. If a patient’s PF cannot be categorized it is placed in the sixth category-idiopathic.

    THERE IS NO KNOWN CURE but there are treatment options. Those include Oxygen therapy, pulmonary rehabilitation, medications, in some cases lung transplantation and in others, palliative care and/or hospice. It is a progressive disease, which means it worsens over time. As it progresses, everyday activities such as showering, getting dressed, speaking on the phone and even eating can make patient breathless. Showering and getting dressed already does that for me. Eating can if I do it too fast or eat too much.

    Common symptoms are shortness of breath, cough and fatigue. Scar tissue makes your lungs stiff. Stiff lungs are hard to stretch, so your breathing muscles have to work extra hard just to pull air in with each breath. Your brain senses this extra work, and lets you know there’s a problem by triggering a feeling of breathlessness or shortness of breath. The shortness of breath in turn can trigger a cough. Studies estimate that people with PF can cough anywhere from 200-500 times per day. Now imagine all that coughing and all that extra muscle work just to breath – now you understand the fatigue.

    I think the things I miss the most are things most people take for granted, being able to laugh without going in to what feels like a life threatening coughing fit, being able to sing/dance to my favorite songs while cooking/cleaning, being able to sing in my car on the way to work without sounding like I’m falling off a cliff or simply going for a stroll on a beautiful day without a care in the world, not thinking about where I’m going, how far I’m going, can I make it?, is it flat? how hot/humid is it? is it too cold? and for heaven’s sake NOT having to carrying around that oxygen. It’s a real love/hate relationship I have with it at this point.

    Throughout the month of September I weaned off of prednisone and then got my first cold/upper respiratory infection since being diagnosed. I had posted in one of my support groups that my diagnosis is ALL I can think about and it was the truth! Even though I felt about the same as I did prior to knowing what I had, maybe even a little better with the medications, I was totally consumed by it. I wrote “I struggled with some of my daily activities but I feel like knowing what I have and the prognosis has actually crippled me in a sense”. I went on to post when I got the upper respiratory infection that “being sick with this chronic illness is a whole different experience…kinda scary. Oxygen sats are still ok but I get to coughing so hard I get short of breath. And sometimes I cough up huge amounts of mucous all over myself, it’s disgusting! I’ve been doing pretty good, I just came off of prednisone after four months, I hope this doesn’t set me back”. A simple cold, and I was afraid! I was concerned that it was going to set me back and all of my upcoming tests in October were going to be affected.

    Now, my challenge to you. During Pulmonary Fibrosis awareness month the Canadian PFF came up with the Pucker Up Challenge.

    1. grab a drinking straw
    2. pucker up
    3. breath

    But don’t stop there. Now grab your laundry basket and try to do your laundry while breathing through that straw. Or grab your mop and try to do your floors. Or simple go for your daily walk. Lucky for you, you can take the straw out when it gets hard. The only thing I get is a 10 pound oxygen concentrator to strap to my back to carry around. The breathing doesn’t get any easier. And please, don’t get me wrong, I’m not looking for pity, maybe just understanding and a small amount of empathy of what life is like for me EVERY DAY! ALL DAY!

    Let me know what you felt, I would love to hear your experience

  • Family guilt

    Today’s post will jump around a bit because I did forget to write about something that I find important in my journey, not so much because of how it affects me but because of how it affected my son. I knew that I was going to start forgetting things in the order that they occurred now that I no longer have journal entries to go off of (which I will be remedying as I am going to be starting those again so that I have my true feelings down on paper when I get to the present – we have a ways to get to today). Unfortunately, you my readers may have to be accustomed to my random thoughts as they occur however until we get the next two years covered – sorry. Anyways, the first part of today’s post was triggered because of the second so bear with me.

    August 2023, prior to K’s accident in Sept., my son went to Niagara Falls with his girlfriend at the time and her family – I believe for an over-night stay ? – but NOT the point. Upon their arrival I received a call that some health issues had transpired in her family which prompted my son and his girlfriend to get tested for Covid – low and behold they were positive. My son called and said they were in the middle of gathering up a week’s worth of his clothes and personal items and scrubbing down everything they touched with Clorox wipes – he would go to their home to quarantine for the week – and with that he broke down over the phone. He was so stressed that he may have just brought Covid in to my home but he didn’t know what else to do. He was so scared, you could hear it thru the phone. I tried to reassure him that the few minutes that he spent getting his things would be fine and that they were doing all the right things – wearing gloves and masks, cleaning surfaces – but again it’s that feeling of “what if I’m the ONE”, and my poor family feel it every time they get a sniffle, a scratchy throat, start to feel the slightest bit warm. My husband has slept on the couch numerous nights “just in case” or kisses me now “on the forehead” because intimacy spreads germs. My children wear masks in my home just out of precaution because they have a slight throat tickle. I’ve missed baseball games and soccer games because parents weren’t feeling 100% and it was “for the best” that I not be there. It’s funny how love and consideration for me made me feel so alienated back then. Intentions were in the right place but at the time all it did was remind me that I was sick and just made me feel more alone.

    Now, for the second part of the post we will need to switch gears a bit. My last post I wrote about my grandson’s K car accident. At the end of it I wrote about being angry I couldn’t help in a time of crisis but that getting him home allowed me to let go of the anger – did you notice that I also said GUILT? Today, I’ll explain why I had guilt.

    Prior to the accident we had planned to take our middle daughter and our youngest granddaughter, C to Niagara Falls where her uncle had just been. Our middle daughter is a single mom who works part time in a bakery while raising her daughter on her own. Needless to say she doesn’t make a lot of money – not nearly enough to enjoy things like trips, so we planned a small weekend. Well, K’s accident happened on Friday afternoon before said weekend. With his femur surgery performed the night before and not yet realizing the gravity of the bleed in his spleen when had a family discussion, including K’s mom, and with her blessing decided to still go to Niagara Falls but just to make it an even shorter trip. We still got to do a lot, even got C to ride the Maid of the Mist, and I think she enjoyed her first real “trip”, but man did I have some Nana guilt. I felt like I had chosen one grandchild over another – and in a way I did. But I kept trying to tell myself that we went with his mother’s blessing and he had better visitors that night anyways. (see the last photo)

    I’m not really sure why I felt compelled to write about the Niagara Falls trip in my health blog – some will say it has nothing to do with my lung health – but it does have to do with my mental health. I’m also trying to show how my deteriorating physical health impacts every decision I make in my life. So maybe you may not understand the point of this one particular post but keep reading and hopefully each post with eventually come together and everyone will be touched by something I’ve said.