I am very excited to report that with the help of a wonderful friend and former nurse, I have found a place where I can get plasmapheresis done the way I want it done (no port, fistula or catheter), just UNDER an hour away. Right now I have to travel 300 miles round trip, which, with a 4 1/2 year old, makes 3 hours each way. Plus the treatment, plus a meal on the road.
NOW, we can drop Jacob off at my parents (who will FINALLY be home today from Florida), who actually live on the way to the facility I'll be going to, drive another 12 minutes to the hospital, have my treatment (1 1/2 to 2 hours total) back to get Jacob and home all in about 4 hours. Whoo-Hoo!!! I have been searching for this for years.
There are plenty of facilities who do plasmapheresis, but they all required a port or fistula or catheter. No one would do it just in my arm veins. Well, now they will. OH HAPPY DAY! This is seriously amazing news for me. To cut the physical stress of the 3 hour drive, with Jacob, the 3 hour drive home, the gas money it takes, the money to eat out, and going once every 3 weeks...
Compare that to a four hour trip total, no eating on the road, 1/3 of the gas, Doug wouldn't even have to take a whole day off of work! PLUS, I could get it done every other week, which I'm sure would be more beneficial, with so much less stress. Amazing. This is the best news since I thought I was going into remission from Rituxan. Although we are certainly hoping for a better outcome.
Speaking of...having a hard time today. I was up a lot during the night with Jacob, because first his dog "had the cough-uhs" and so he couldn't sleep. So Doug put Blackie in our room. Then Jacob came in because he couldn't sleep without Blackie. And he was hungry. So here we go, in the middle of the night, downstairs (and only because my insulin pump was about to run out in like 12 minutes, otherwise he would've stayed in bed) gave him a snack, I changed my pump, and when we got back upstairs, Blackie went back in Jacob's room and Jacob was told what would happen if he got up again. (Nothing pretty, let me tell ya).
So because I'm extra tired, and still emotionally recovering from the disappointment of the Rituxan...it's already been a trying day. Still trying to get more help. Talked to a local pastor today who wants to come out and meet with me...but he just had foot surgery, so it will be a couple of weeks. (So if you think of it, say a little prayer for Pastor Chad and quick healing for his foot).
It will be a while before Doug and I can hire someone (which we haven't even talked about because he's been so darn busy, but I have it all worked out)...and Love INC is in the works... it's just that everything takes time. So I'm still pretty much on my own right now, except for my favorite cousins, Kerry and Karen.: ) And a very kind lady from the GAPS program who hasn't been able to come out for a while for one reason or another (all on my end, not hers).
So I definitely still need lots of prayers to make it through, and get done all that I need to: (bills, budget, phone calls to messed up bills and insurance, not to mention raising and homeschooling a child and taking care of 3 dogs). Yup. That's me.
Thanks!
Fighting this disease called Myasthenia Gravis (MG) with a little humor, some good friends, and a lot of help from Above.
Showing posts with label help at home. Show all posts
Showing posts with label help at home. Show all posts
Wednesday, March 30, 2011
Friday, September 24, 2010
What About Obligation?
So I'm talking to my counselor yesterday about how overwhelmed I am, and how exhausted I am, and since Doug is sick there's more I have to do, etc.
He suggested making a list of what I do, what I love to do and what I'm good at. I'm like, well that's easy...but where does obligation fit in here?
He looked at me like I asked a question in Hungarian. What obligation do you have? he asked.
I was like, um, cleaning...cooking....laundry....putting my dogs out...feeding them...taking care of my child...
Okay, so let's add a column for things I HAVE to do: like put the dogs out (technically I don't HAVE to, but I'm not cleaning up after them so...), feed and clothe Jacob, meet his needs (not all his wants, at least I've got that part down!)
Aren't there still obligations in life? Am I not obligated to TRY to take care of my house? I make all the phone calls and all the joy that goes with scheduling things for all of my doctors (who seem to keep growing instead of compacting!) I pay the bills, I do the budget...half the time I give Jacob his baths....the other day Doug had to go to the doctor (which NEVER happens) and Blackie jumped in the stupid duck pond (for which we have no longer have ducks.)
So after Jacob's bath, I knew I'd have to give Blackie one, because he stunk, and Doug wouldn't do it when he got home because a. he doesn't care if the dog stinks (he works at a poop plant, and says he can't smell it, so obviously I'M the better smeller of the two of us!) and b. he's really sick and doesn't have the energy.
FRUSTRATING. The only things that get sacrificed are the things I want to do, and according to my mental health expert, those are the things I SHOULD be doing to retain some semblance of sanity. (My words, not his...he hasn't checked me into the funny farm yet...although I think he's seriously considering making reservations. If he doesn't, maybe I will!!)
So what do YOU think? Do you have obligations? How do you handle them if you have chronic illness? Since we have a car payment now we really can't afford to bring anyone in to help, but because Doug has a great job we make too much to qualify for "help" of any kind.
Ug. Please let me know how you do this!!!
He suggested making a list of what I do, what I love to do and what I'm good at. I'm like, well that's easy...but where does obligation fit in here?
He looked at me like I asked a question in Hungarian. What obligation do you have? he asked.
I was like, um, cleaning...cooking....laundry....putting my dogs out...feeding them...taking care of my child...
Okay, so let's add a column for things I HAVE to do: like put the dogs out (technically I don't HAVE to, but I'm not cleaning up after them so...), feed and clothe Jacob, meet his needs (not all his wants, at least I've got that part down!)
Aren't there still obligations in life? Am I not obligated to TRY to take care of my house? I make all the phone calls and all the joy that goes with scheduling things for all of my doctors (who seem to keep growing instead of compacting!) I pay the bills, I do the budget...half the time I give Jacob his baths....the other day Doug had to go to the doctor (which NEVER happens) and Blackie jumped in the stupid duck pond (for which we have no longer have ducks.)
So after Jacob's bath, I knew I'd have to give Blackie one, because he stunk, and Doug wouldn't do it when he got home because a. he doesn't care if the dog stinks (he works at a poop plant, and says he can't smell it, so obviously I'M the better smeller of the two of us!) and b. he's really sick and doesn't have the energy.
FRUSTRATING. The only things that get sacrificed are the things I want to do, and according to my mental health expert, those are the things I SHOULD be doing to retain some semblance of sanity. (My words, not his...he hasn't checked me into the funny farm yet...although I think he's seriously considering making reservations. If he doesn't, maybe I will!!)
So what do YOU think? Do you have obligations? How do you handle them if you have chronic illness? Since we have a car payment now we really can't afford to bring anyone in to help, but because Doug has a great job we make too much to qualify for "help" of any kind.
Ug. Please let me know how you do this!!!
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