Guest guest Posted September 4, 2008 Report Share Posted September 4, 2008 MB, Have you seen this IKE ?? I am not happy but we're ready. You probably need to look into a generator. They can be hooked into your electric box It will be a blessing if you need power. We have three of them for the ACin my bedroom, the freezer and a few lights. Might pay to look into it.. Love & Prayers, PeggyFlorida, IPF/UIP"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Beth,Don't beat yourself up over it....We have all probably been there and done that. It is our valient attempt to retaind a bit of "normalcy" in our lives.I remember crawling back into the house after attempting to dig out a hige bush from the side yard........I swore it was either it or me. Luckily I won, but it very easliy could have gone the other way.Be careful, OK?Tom from PAAOSD start 01/4 DX 5/05 PF 05/08 Sjogrens 07/08One of our "DUH!" moments.>> OK I admit it, I over did it today. I ran a couple of small errands (library to return two books and the post office to mail a package) and then went to my sisters. I toughed my way through a full hour on the treadmill and then stopped at the supermarket on my way home. Tonight I feel half dead. Everything hurts and I am more tired than I can remember being in a long time. > I found out belatedly that we were in a "code orange" air quality alert today so I should have been more careful about what I did. Idiot, idiot, idiot. > So lesson learned....again. Will I ever 'get it'? Not too bright am I?> > Beth > Age 48 Fibrotic NSIP 06/06 UCTD 07/08> > Change everything. Love and Forgive > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2008 Report Share Posted September 19, 2008 , You hit the nail squarely on the head. Dealing with someone with dementia is completely and totally exhausting. It's only in taking a break this week that I see what a toll it's taken on me. As you say it's all the tiny little things you have to help them with in addition to taking care of myself and my O2 needs at the same time that add up to just a huge energy drain. It does look like she's probably going to be entering the Spring Arbor assisted living facility in Durham very soon. I may have a couple of days with her next week but that will likely be about it. I will of course visit her but that won't be the same thing as having responsibility for her well being 3 days a week. I love her dearly and I'm happy that I've been able to help during this difficult time but I'm also glad for my own sake that it's almost over. Thanks for caring!! Love, Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive MB I am so sorry you got sick, I know how disappointed you are . I was so angry when I couldn't go to Chattanooga. Take care of yourself. ipf 2/07IL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2008 Report Share Posted September 19, 2008 Beth, God is surely watching over you. You do such good things for the world. Rest and get your strength. There will still be things for you to do and people to respond to. I appreciated your comment about methotrexate. I went to a medical website, and the things I read...whew!!! I don't want to take it or remicade. These decisions are so hard. I pray to get an answer. Until that happens, I'm using tylenol, yoga, pulmonary rehab, exercise bike at home, and eating lots of veggies. Love to all. Wilma IPF 10/05 RA 2/06 **************Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators. (http://www.walletpop.com/?NCID=emlcntuswall00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2008 Report Share Posted October 14, 2008 Peggy, I was planning to leave Tuesday morning if that's ok with you. I can leave Monday if you're sick of me! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 MBOK I've been really calm... NOT... IF YOU WANNA you can leave tomorrow.. (*b*)PLEASE Please please..... Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." <1.2056944441> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 Peggy/Joyce Yes, I need to get on the road some soon. I've let MB pass me by and leave me in her dust. I would say to anyone to find a way to go visit the people you want to. I'd be all around, seeing you all, if I had the money. The higher your flow the more difficult it becomes but its still worth it and just insist your provider provide you what is needed for the trips. While most of my equipment is through my provider, I have purchased some to supplement it and provide myself even more protection and flexibility. Also, my oxygen provider is local and not national so I do have to pay when I get my reservoir filled while traveling. But, on long trips I take a 50 pound reservoir with me so not too many refills. Actually there is a way that I could get some of the medicare money going to the refill instead of my regular provider and not pay or pay less but I don't know the details of how and do know its way too complicated for me to deal with. Travelling is the reason I considered switching to Lincare, but I haven't done so. > From: Beth mbmurtha@... > Subject: Re: MB > To: Breathe-Support > Date: Tuesday, October 14, 2008, 8:10 PM > > Peggy, > You are a wackadoodle! I can't leave tomorrow cause I'm taking my > mom to the doctor. I am packing however and I will leave Thursday > morning and will arrive at your home sweet home early Friday > afternoon. How's that??? > Love you! > MB > > > > > > > MB > > OK I've been really calm... NOT... IF YOU WANNA you can leave > tomorrow.. (*b*) > PLEASE Please please..... > > Love & Prayers, Peggy > Florida, IPF/UIP 2004 > > " I believe that friends are quiet angels who lift us to our feet, > when our wings have trouble remembering how to fly. " > > > <1.2064017188> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 Hi Joyce, Yup, I'm driving by myself. Have O2 will travel has been my motto. I know the day will likely come when I won't be able to do trips by myself like this so I want to do them while I can. My arrangements are very much do it myself. My current O2 supplier here in Durham delivered a dozen D tanks for me yesterday. They will get loaded into my car tonight by my very kind brother in law along with my concentrator. It will take two days of driving to get to Peggy's. It's about 575 miles from door to door which is too much for me to do in one day anymore. I will drive the 320 miles to Savannah, GA tomorrow and then the remaining 240 or so to Peggy's on Friday. In the two days of driving I will use only 2 tanks, that's because my O2 needs while I'm just sitting and driving are minimal. I can keep at at 2 liters and can also have it off completely for periods. I just have to mind my sats and turn it back up if I start to drop. I am completely capable of unloading my concentrator at the hotel though in my experience there is always someone around who offers to help. I always bring my O2 prescription with me in the event that I need it for some reason. I also take copies of my medical info, my health care proxy forms etc. Those are in an envelope taped to the outside of my glove compartment. I have all that info and the forms saved on a key ring memory stick. I also wear a Medic Alert bracelet. It probably sounds like overkill but since I'm traveling alone I want to insure that any type of emergency personell can have the information they need to treat me properly. It also allows me to just relax and enjoy the trip. I love to drive and enjoy the time on the road. Then at the end of the road comes the best part getting to visit with someone like Peggy (and and the rest of her family too!) Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 MBOK I've been really calm... NOT... IF YOU WANNA you can leave tomorrow.. (*b*)PLEASE Please please..... Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 MB/Joyce I use to not like driving on trips at all, but I think it was because I was in a hurry and my life so rushed. Making a trip like Beth is describing I find can be enjoyable now. I've purchased lots of CD's at Half Price Books and can listen to what strikes my mood. Comedy is great when I need to be picked up. Not only have I found people don't mind helping you at hotels, but they seem to truly enjoy it. I think the oxygen equipment makes your needs pretty obvious. Amazing how many you find who have had a relative on oxygen. I know one girl in Illinois had had a grandfather who was on. I honestly think helping me somehow was like she was doing something with him in her thoughts. While I have mapped a plan I allow enough time that I can travel leisurely, or at least somewhat. At least I can grab something to eat when I want or if I see something of interest stopped. I never eat a large meal when travelling. Helps not get too full and gives me more reasons to grab something small at another stop. MB's first day is about 5 1/2 hours (probably less depending on how fast she drives) and second about 4 hours. What that means to me is if you don't get up and out when you meant, no big deal. If you decide to stop and browse for an hour at some interesting store or other place along the way, no big deal. On my long trip, I remember even one day after lunch just reclining my seat, turning the music on, and taking a short nap. Planned as she has done, not just the destination is enjoyable but, also, the trip there and back. Obviously you can make that trip in one day but then, at least to me, it becomes more like work, than pleasure. I also do the overkill she does. In addition, and I don't actually know if anyone looks, but I've been told they do, I've put two contacts on my cell phone. One reads " Emergency " and one reads " ICE " (in case of emergency). They both ring 's number (she is the one I've given Medical Power of Attorney and other powers to). While I don't really plan for it, somewhere in the back of my mind is sort of the major cities and hospitals too. At least if I started with a problem along the way, where would I most prefer to go. As an example, had I started feeling an issue with my lungs in Eastern North Carolina, I would have headed to Duke. I've made an ER trip (was weird very severe pain in my elbow) on my travels (Memorial Day and no urgent care facilities open). It was no big deal. Exactly what I would have done at home. Took meds and rested that night. Continued my trip the next morning. Oh, MB, now you've made me so want to take the next trip. In some ways I have a PF induced retirement (disability) I guess. Maybe the retirement I never would have gotten around to otherwise. I've done more travelling, visited more people, and in many ways enjoyed life more the last year, since my diagnosis, than any other time of my life. All on oxygen. > > From: Beth mbmurtha@... > Subject: Re: MB > To: Breathe-Support > Date: Tuesday, October 14, 2008, 8:10 PM > > > Peggy, > You are a wackadoodle! I can't leave tomorrow cause I'm taking my mom to the doctor. I am packing however and I will leave Thursday morning and will arrive at your home sweet home early Friday afternoon. How's that??? > Love you! > MB > > > > > > > > MB > > OK I've been really calm... NOT... IF YOU WANNA you can leave tomorrow.. (*b*) > PLEASE Please please..... > > > Love & Prayers, Peggy > Florida, IPF/UIP 2004 > > " I believe that friends are quiet angels who lift us to our feet, > when our wings have trouble remembering how to fly. " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 YES, MB, now I printed out your post and gave it to Earl that you are making this trip to " Peggy's Porch " WITHOUT me. Boo hoo I gave it to him to read, but there is no way he would let me go even to the store by myself. Why is that? I LOVEYOU THIS DAY MARY LOU IPF - 02 > > > Subject: Re: MB > To: Breathe-Support > Date: Tuesday, October 14, 2008, 8:10 PM > > > Peggy, > You are a wackadoodle! I can't leave tomorrow cause I'm taking my mom to the doctor. I am packing however and I will leave Thursday morning and will arrive at your home sweet home early Friday afternoon. How's that??? > Love you! > MB > > > > > > > > MB > > OK I've been really calm... NOT... IF YOU WANNA you can leave tomorrow.. (*b*) > PLEASE Please please..... > > > Love & Prayers, Peggy > Florida, IPF/UIP 2004 > > " I believe that friends are quiet angels who lift us to our feet, > when our wings have trouble remembering how to fly. " > Quote Link to comment Share on other sites More sharing options...
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