Page 1 of 2 12 LastLast
Results 1 to 10 of 19

Thread: Our Black Friday

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,916
    Blog Entries
    1

    Unhappy Our Black Friday

    ((((((Hugs to All)))))) ~

    On Friday morning when I went on my walk, I noticed 4-5 boxes of Jonís supplies on our porch. They were there, when I returned 30 minutes later.

    Jim was unwell and had to go to bed. Jon was asleep, after he had 1 mg Ativan at 3 a.m., since heíd been awake for 36 hours and had only had 2 hours of sleep in 2 days. He ended up sleeping for 17 hours. I was busy caring for them and didnít have a chance to bring in the boxes.

    A couple of hours later, I heard a delivery at our front door. So, I peeked out to see what it was.

    Jonís boxes of supplies were gone!

    Fed Ex had left a box of oranges (we order them on line for fresh juice). But Jonís supplies were gone.

    I called Fed Ex to ask whether the driver had inadvertently picked up Jonís supplies. Still havenít heard back.

    I called the person in charge of sending our supplies to ask for the vendor and tracking numbers of the packages. I had to leave a message, because itís a holiday, and people have the day off.

    Finally, I realized that Jonís supplies were most likely stolen. Friday is our usual trash pick up day, and people often drive up and down our streets looking for cast offs and recyclables. Itís possible that they were also looking for packages on porches, since it is the holiday season. Maybe they thought that Jonís supplies were Christmas gifts or something useful for them. Perhaps they couldnít read, or didnít recognize the name ďMedLineĒ on the boxes. Perhaps they need colostomy bags, suctioning supplies, and 100 ml bottles of saline for catheter irrigation and suctioning traches. But probably not.

    However, Jon desperately needs all of those supplies right now, because he is out of them. His urine output is very slow, and he needs an irrigation of his cath. Heís congested from fluid retention and needs suctioning. But we have no sterile saline.

    As long as he doesnít have a bowel movement, heís okay without those colostomy bags. But he needs a BM desperately, and weíre planning to give him more MOM tomorrow.

    Stealing packages off of homeowners' porches is terrible, but stealing medical supplies from a man, who needs them to survive, is despicable.

    Iím furious. And helpless.

    The amount of deliveries weíve had to our front door over 40 years is mind boggling. This has never happened before. Itís not just disheartening. It jeopardizes Jonís health.

    It sure has put a damper on the holiday spirit in our home.

    Love & Light,

    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  2. #2
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    So. Calif.
    Posts
    313

    Default

    That's terrible Rose. This problem has been on the news a lot. People follow the UPS; FedEX; Amazon; etc. drivers out of the dispersal centers and just take what they want when the packages are left on porches. So sad what our society has been reduced to. Sure hope you get the supplies you need quickly. May pay to put up a security camera on your front porch. They know where you are now and medical supplies can be sold on many websites. Could make you a target in the future.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  3. The following user says "thanks"


  4. #3
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    6,191
    Blog Entries
    12

    Default

    How sad that this happened! Unfortunately anything that isn't nailed down outside your house or apartment is apt to be stolen nowadays because, as Tamie said, there are people on the lookout for such items. I've had a couple of packages that vanished, almost right under my nose.

    It doesn't matter what's in the package--these people can sell just about anything.

    If you've dealt with the company that sent the supplies before and they "know" you, they'll probably send you a reshipment by a fast method if you explain what happened. I hope so!
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  5. The following user says "thanks"


  6. #4

    Default

    Hi Rose,

    That's awful your supplies were stolen. Did you file a police report for the stolen items? Hopsfully they will be able to be replaced.

    Marcie

  7. The following 2 users say "thanks"


  8. #5
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,173
    Blog Entries
    15

    Default

    Hi Rose, THAT'S AWFUL! Unfortunately like the others have said anything can be stolen. It is why I am so careful with my cell phone,crutches and scooter. I have seen people have clothes and very heavy bikes stolen off porches. I am NOT faulting you but if I were you if you see packages on your porch in the future especially something like medical supplies BRING IT IN THE HOUSE IMMEDIATELY! If you can not lift the boxes simply push the boxes into the door and shut the door and have Jim put them in the appropriate place later. I am often unable to lift packages due to lack of balance but I devised a way to get them inside until I can seek further help. My guess is the people who took the packages either thought they were garbage or did not care. I'm so sorry to have to go through the scary experience of not having what Jon needs to live! Unfortunately human beings can be awful to each other.
    Last edited by funnylegs4; 11-27-2016 at 07:08 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  9. The following user says "thanks"


  10. #6
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,916
    Blog Entries
    1

    Default

    ((((((Hugs to All)))))) ~

    Thank you Tamie, agate, Marcie, and funnylegs4 for your support.

    We are going to get a security camera for our porch and for over our garage door. (Just hope the thieves don't steal them!) It really irritates me that we have to do this ~ we have so much going on everyday, and we can't fit in the things we NEED to do, let alone this, which we shouldn't have to do.

    It's quite upsetting to think that we could now be the target for repeated robberies. Grrrrr...!!!!

    Our supplier works for our nursing agency, and he's a wonderful person. He's never met Jon, but he tells me that Jon is his bud, and that he will always take extra good care of him. He sends Jon's supplies quickly, usually next day. But the holiday intervened, and they were delayed.

    I'm the Queen of dragging boxes! If it's too heavy, I open it and unload items into the house. Jim's RA is in a flare, and now so is mine, because I've been doing everything for 3 days, including waiting on him. But, when both Jim and Jon are having issues, I have to set mine aside. I'm the caregiver. I come last.

    I haven't filed a police report yet, as I've been waiting to hear from FedEx, and I want to talk to our supplier tomorrow morning. I'm really not sure what good it would do to file a police report, since we have no evidence of who the thieves are, and our neighbors basically ignore everything on the street. They all keep to themselves, and even if they saw our packages being stolen, they would likely do nothing.

    But you can be sure that if they see a police car in front of our house, they'll all be gossiping about the reason.

    We typically check our front door frequently day and evening for packages. We shop almost exclusively on line, so we have deliveries several times a week. We usually bring the packages in right away. But Friday was an exceptionally difficult day. I had my hands full with caring for Jon and Jim (still do), and I just didn't get a chance to bring in the boxes. Naturally, I blame myself now for not just dropping everything and bringing in the boxes.

    Is there a word for beyond exhausted? If so, that would describe me right now.

    Thank you again for your friendship and caring.

    Love & Light,

    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  11. The following user says "thanks"


  12. #7
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    So. Calif.
    Posts
    313

    Default

    You can only do so much Rose. Caregiving is an exhaustive endeavor built around love and endurance, not superhuman strength. Don't beat yourself up. We live in a "me, me, me" entitled society with no boundaries. Heaven help this country when the entitled brats take over for good. Not sure I want to be around then. Not a pretty thought. Praying you are able to get Jon's supplies, put up security and get on with being the wonderful mom, caregiver and wife you are with no further distractions.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  13. The following user says "thanks"


  14. #8
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,916
    Blog Entries
    1

    Default

    ((((((Tamie)))))) ~

    Aww ~ thank you so much for your kind words.

    What is the latest with Tyler?

    Love & Light,

    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  15. #9
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    So. Calif.
    Posts
    313

    Default

    Tyler is miserable. Been shrieking all morning. He's wearing a cardiac event monitor and hopefully getting a lot of usable data. Took him to the ENT appointment last Wednesday. He had a full-blown AD episode in the office. Actually felt sorry for the doctor. He knew nothing about AD and couldn't get out of the office quick enough. Wants Tyler to see Gastro and have an endoscopy done to get a better view of the upper airway. Back to square one.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  16. #10
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,916
    Blog Entries
    1

    Default

    ((((((Tamie)))))) ~

    I'm so sorry that the ENT wasn't helpful. I hope that the cardiac monitor will reveal something meaningful. I'm sure that it is difficult not to be discouraged. I'll keep sending healing prayers and prayers for answers.

    Our nursing coordinator called today and left a message. Supplies have been reordered and will be delivered tomorrow. So I spent all day today looking out the front door for nothing! Oh well, I'm just thankful that he'll have them. No mention of a need to file a police report from them. They would be the one to make the claim, as they can't be reimbursed by Medi-Cal for the stolen supplies.

    At 3 this morning, Jon's SATS tanked to 67, and Jim started suctioning. Jon was filled with fluid, and water was coming out of his trache. Jon was gagging, and Jim was prepared for him to vomit, which, thankfully, he didn't. He finally settled down and fell asleep at 8:30 a.m.

    But by 2 p.m., his SATS tanked again to 67, so I suctioned (Jim was in bed) and couldn't get him above 87, so I put him on O2. We just had to suction again, as he dropped to 85 and that's on 2 liters of O2.

    The good news is that his urine output has increased, and he's had a BM, without MOM. But I gave him MOM anyway to keep it moving.

    Jim has excruciating pain on his left side now. I suspect he strained when we turned Jon yesterday. Jon weighs so much now with all of this fluid, and he was resisting Jim, because it's uncomfortable to be turned. So, I've been applying Tiger Balm, and he's taking Advil and using the heating pad in bed. He's been coughing a lot, so I worry that he might have a fractured rib. I even researched pleurisy, which is not uncommon with autoimmune disorders.

    Jon's nurse will be here on Thursday to change his cath, and we'll have a lot to share with her then. I'm sure she'll check Jim too.

    Fun, fun, fun.

    Love & Light,

    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

Page 1 of 2 12 LastLast

Similar Threads

  1. blue/black or white/gold?
    By SuzE-Q in forum Multiple Sclerosis
    Replies: 22
    Last Post: 02-28-2015, 09:51 AM
  2. Freaky Friday
    By Howie in forum Multiple Sclerosis
    Replies: 25
    Last Post: 02-18-2015, 03:52 PM
  3. Copaxone helps prevent conversion to black holes
    By SuzE-Q in forum Multiple Sclerosis
    Replies: 2
    Last Post: 01-05-2015, 05:52 PM
  4. Dental surgery definitely on Friday
    By Donna Thomson in forum Child Neurology
    Replies: 5
    Last Post: 12-08-2013, 01:51 PM
  5. There's going to be a show on Dr. Phil re Lyme this Friday
    By Matthew's Mom in forum Lyme Disease
    Replies: 1
    Last Post: 04-14-2012, 10:14 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.