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Trying to decide if I should cancel a trip and just take a guilt trip

I'm suppose to leave next week for a trip to Boston, my husband and 2 sons are running the Boston marathon. I was there last year at the finish line waiting for them when bombs went off. I have already said I won't be able to stand the hours required to see them finish. Not I'm debating if I should make the trip at all.
I have had lower back pains for years, but I have gotten so use to it I work around it. That was until a new symptom started about 6 months ago. It's a lightening bolt type of pain that hits my lower spine and use to leave as fast as it arrived. I would get them once a week. When they increased in frequency I went to an orthopedic. Some of what my MRI showed,
" severe narrowing on the report for L2-3.
L5S1-Severe right sided posterior facet arthrosis. Is that arthritis?
L5- 5mm degenerative neocyst versus synovial cyst to the extraforaminal portion of the right L5-S1 facet joint. I've only listed what states severe. There are multi level disc disc bulges with most severe on the right L5-S1 level." Among other things.
He referred me to a pain specialist. That appointment is late May, possible epidurals. Orthopecic prescribed tramadol, 37.5 mg and acetaminophen, 325 mg. Can't say they help much.
Over the past couple of weeks my lightening bolts of pain increased dramatically in power and frequency. One time it shot from spine to my foot. It almost feels like something very bad is going to happen. Doc said it's the nerves are being pressed.
Now I'm not sure if I can do a flight and a "vacation" visiting family. Sure I want to spend time with our kids & grandkids but I'm beginning to see what I'm facing and don't know if I should go. I guess I would feel very guilty not being there.
We made a trip a couple of months ago. At that time the lightening bolts were infrequent yet I did have one walking through the terminal on our return home. I yelled out loud and held onto a rail that was next to me.
Sorry this was so long. How do you manage vacations or lack of that cause guilt trips instead.



Take Care.
Jo
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1

Comments

  • TarenTTaren Posts: 524
    edited 04/11/2014 - 5:21 AM
    Personally, I'd try to go. You said yourself that you would feel guilt not being there. Nope, don't take the guilt trip it never does a bit of good. I have the same delima as you, my lil weekend trip is not as grand as yours but, this weekend we are going to Dayton. I'm not feeling up to it, really, but I try real hard not to let pain dictate what I do and don't do. I just feel that if I let it then it will win. Pain has been referred to as the "Beast" here, Its huge, its mean & its ugly & it will take away from you everything that you allow it to and if you allow it to take away little pieces of you at a time, before you know it, it will OWN you. So, if I were you I would try to go. But only you know how you are really feeling, if you can't do it, you can't do it...There will be other battles with the "Beast" and if you can not go, and he wins this battle with you, it does not mean he has wont the war with you.
  • paranoidpparanoid Posts: 4
    edited 04/11/2014 - 5:37 AM
    Hi there,

    as a child of someone with chronic pain, if I could sense that my dad was at an event or something out of guilt it made me feel terrible and way more hurt than if he just decided he was in too much pain to go. He's a bit like a machine, so if he commits to a trip and expects a lot of pain, he just packs for that and mentally prepares for it. Meds, ice packs, the works and sort of commits to the weekend of pain and makes the most of it. If you can summon the will power to not let the pain get to you for a period of time then you might be able to make some good memories. On plane trips he stood for the duration of the flight since sitting was his worst position.

    The other side of that is, if you're just too fed up or exhausted with pain and could use the alone time to recharge yourself then that's your prerogative and I think you have every right to do that. My suggestion is to just be honest and communicate your sorrow if you decide not to go, or communicate ahead of time that you might need some alone time on your trip to feel miserable or something. Your family might be pretty understanding if you give them a chance to be, maybe they'll even be relieved that you want to take care of yourself instead for a couple days. You could even evaluate how much it means to everyone that you be there... I just don't want to see you be a martyr if you're miserable the whole time (and rightfully so, not putting you down for that at all), everyone else might feel that too.

    The way I see it, you're going to be in pain at home, or pain on a trip with your family... I think it depends on what you think you might need mentally and emotionally to cope with that pain. Could be the familiarity of your own home, could be being with your family. You could also make it up to your kids by spending a different vacation or quality time with them when they come back to rid them of their disappointment if they even have any at all. Are they making you feel guilty or are you making yourself feel guilty?

    Keep us updated, I'd love to know what you decide to do.
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  • margjommargjo Posts: 31
    edited 04/12/2014 - 3:02 AM
    Thanks everyone. If it was just the everyday back pain I would go. With that I know what to expect. It will be there and it will be painful, no surprises. It's the sudden bolts of pain that have me concerned. They hit hard. I have figured out the more I'm on my feet seems to bring on the frequent, sudden, very painful ones. Right now I don't trust myself to drive because they are so unpredictable.
    I do know if I go up we'll be very busy. In my mind right now that translate to a lot of pain. It was difficult enough letting my husband and two sons know I would not be at the finish line in Boston. Last year husband & one son ran the marathon. They were stopped at mile 25. I was with grandkids, daughter, DILs, son. We saw the bombs go off. That made my oldest son decide to join his Dad & brother this year. The three have trained so hard & long for this and I knew they would be disappointed and they were.
    I don't think people understand how this limits us. My husband asked about taking grandkids to Plymouth Plantation as we have done in years passed. I'm tired of saying I can't. He'll say how about waiting to see how you're doing and I have to explain again, this time around it's different. There is no planning.
    Parts of me would like a week off of explaining why I can't do something.

    Take Care.
    Jo
  • I have decided to stay home. It was a tough decision but I want my husband & kids to enjoy their moment without worrying about me. I also have a couple of other issues that need to be taken care off. 6th root canal of the year and some unexpected surgery. I'll know more Wednesday if I do in fact need this surgery. My next question will be, epidural before or after. Hopefully I will not be asking.

    Meanwhile, wish my husband & sons luck this Monday! One of our sons has Lupus. I can't tell you how incredible it is for him to attempt this. Years ago Drs gave up on him. Monday. he'll run a marathon. :-)
    Take Care.
    Jo
  • myharleygirlmmyharleygirl Posts: 54
    edited 04/18/2014 - 3:03 PM
    You are a very brave family. All the best.
    Cervical Laminectomy and fusion C2 to T1 June 2012, Anterior Hip Replacement November 2012, Laminectomy, Discectomy Foriminotomy, L3 to L5, February 2014, evacuation of Hematoma April 2014.
    Cervical Myopathy, DDD, Spinal Stenosis, osteoarthritis
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  • Nothing wrong with making the decision to not go-you know your own body and your limits. I went on my lil weekend getaway last weekend and I hurt on the way there, during, on the way back and I'm still hurting lol..It's the nature of "THE BEAST" I suppose.

    Good luck to your husband and your son, Monday. I know what your son goes through with lupus, I had all the symptoms-my westergren sed rate and my CPR (C-reactive Protein) both came back high, so for about a month I was told I had lupus, but with further testing and answering a ga-zillion questions it all turned into RA w/secondary sjogrens disease. Anyway, don't worry about missing the trip, you gotta do what ya gotta do at least you gave it serious consideration; also the best of luck to your husband and sons, I will be thinking of them Monday :-)
  • My husband and two sons ran & completed the Boston Marathon!! I sat by the computer all day getting updates. It was an emotional day for so many reasons. I think I mentioned my husband & one son ran last year. I along with my grandchildren, daughter, 2 DILs & a son saw the bombings. My husband and son were stopped at mile 25. The son that was with me managed to get all of us away from the scene and back to our hotel that was steps from the scene. We looped totally around to keep the small ones from seeing things. He then got our car from valet and took all but one DIL & myself home. We stayed to be with our husbands when they returned. All that happened within 25 minutes of the bombings. No sooner was he gone they stopped allowing people out of the city by car or subway. The next day he said he was going to run with his Dad & brother this year.
    They told me it was wise for me to stay home. It was crazy moving around the city yesterday. They walked & walked trying to find a road that wasn't closed because of over crowding. They finally found a spot and took lots of pictures for me. And a couple of videos.
    I shed a lot of tears yesterday. Most were of the pride I feel for my husband & sons, relief that my son that has Lupus did so well.
    They were running for The House Of Possibilities, HOPe is a state-of-the-art facility that provides support to families having children and adults living with developmental challenges, both cognitive and/or physical by providing high quality programming and weekend respite services, including overnight respite that supports individuals and their families requiring 24/7 care! One son has run the marathon 3 tomes for HOPe!
    I feel great today. I guess a high knowing yesterday went so well. I'm looking forward to my epidurals next so I can go and enjoys days like yesterday. Here's what I took from yesterday. My son did what seemed to be the impossible. Knowing how much good their running did for others with so many challenges makes my issues seem small. What I would like to do is post a story I wrote about David for their FB page. I think it's ironic that The House Of Possibilities goes by HOPe. I have learned many times to believe in HOPe!
    Take Care.
    Jo
  • I hope when things feel hopeless you can think of what my son accomplished yesterday. He's LIVING with SLE!


    David Jr Running for HOPe and Running with Lupus

    Some of you know David has Systemic Lupus Erythematosus. Others may have heard David had been through something years ago but really not sure exactly what. David Jr's commitment to run The Boston Marathon is incredible. It's amazing for anyone to commit to run 26.2 miles. But for some like David, it's a bit more challenging.

    When Beata & I first heard David wanted to run The Boston Marathon we had the same reaction. We did not want him to do it! His Dad supported him from the start. After not succeeding in changing his mind I went on a Lupus forum and posted that my son wanted to run The Boston Marathon. I think I wanted people to tell me he shouldn't. That way I could show him what others with Lupus had to say about this. I heard from many, most said it would be difficult for David to train for such a vigorous race, all said to support him and do not to try to stop him. That's what we have been doing and will do on Monday!

    Growing up David always seemed to be a child that needed that extra nap. He would come home from school and while his brother & sister went out to play he took a nap. Every so often he would run a fever with no other symptoms.

    At the age of 12 David was in & out of Children's Hospital most of the summer. He would run fevers up to 106 that would need to be brought down with ice baths. These fevers lasted for weeks at a time. Many tests were performed, including numerous spinal taps and a bone marrow, still no explanation.

    Fast forward, David has graduated from Canton High School. Shortly after in 1990 he informs us he is joining the Marines. His Dad & I were totally against it. We were concerned that his health would suffer. Something didn’t feel right. I called his pediatrician and asked if there was anything he could do. He said, I share your fears but on paper David is a healthy young man. If he passes the physical there isn't anything I can do.

    David was sent to Paris Island. We were very proud but also holding our breath. Father's Day, June 17, 1990 the phone rang. David answered expecting Father's Day wishes. David was in the hospital with a raging fever. Doctors told us to get there as quickly as possible. He was in Dwight D Eisenhower Medical Center @ Fort Gordon, Georgia. Over a 6 month period Doctors poked, probed, biopsied every inch of David. His fever never left, his 6'4" frame only held 135 lbs. He was transferred to Walter Reed to be put on a heart transplant list. There was a problem though, without a diagnosis you can't be given a new heart, besides his liver, lungs and every other organ was giving up. He could not walk. His muscles & nerves prevented that.

    When the Doctors at Walter Reed were unable to come up with a diagnosis he was sent home with the message to keep him comfortable until the end. David still ran a fever, not one day of relief in 7 months. Most times it was 105.

    We contacted many of our politicians for help in having David transferred to one of our renowned Boston Hospitals. Kerry & Kennedy did not offer any help. The amazing Joe Moakley was sent from heaven. He was unable to have David transferred to a Boston hospital but he gave us an aid to contact any time we felt people were not working in the best interest of David. After Walter Reed released David we talked with Joe Moakley's aid. We told him we wanted David back in a hospital but not Walter Reed. An ambulance arrived and took David away.

    David was brought to Bethesda Naval Hospital, within 24 hours we received a call. One of David's new doctors asked us why David had not been put on steroids and had anyone talked to us about Lupus. We let the Doctor know we asked about Lupus and argued to have David on a trial of steroids. They dismissed it being Lupus and said it was too dangerous to try steroids. Yet their alternative to send him home provided no hope what so ever. David started the steroids immediately. A week later we had another call from the same doctor. Did we have any idea where David was? It turns out David left the hospital, hailed a cab and went out for a burger. The Doctor was trying to be serious as he explained David was AWOL. But you could hear him chuckling.

    David was released from Bethesda March 5, 1991. Eight months after the Father's Day call, He was medically discharged from The Marines. He had many more flare ups and hospital stays with doctors debating a diagnosis. In the end the diagnosis was Systemic Lupus Erythematosus. David has done a great job of keeping his flare ups to a minimum.

    We experienced a lot those months in 3 Military Hospitals. In Fort Gordon comfort was sent to us in the form of Albert Cornish. He spent his hours off taking me shopping and sitting with David. I’m happy to say we have reconnected with Al.

    At Walter Reed I met a mother & daughter. The daughter had AIDS. Her husband "David" brought it back to his high school sweetheart after being stationed abroad. David had already passed. She took an interest in our David, they were the same age. She visited David. Sadly, Sandy died. I treasured a poem that she gave me; you have to have rain for rainbows.

    I was with David most of his stays in the 3 hospitals. In Augusta I took a cab daily to the hospital. The cab drivers would ask why I was there. I would explain. They would write David’s name down and pass it out to others to put him on prayer groups. David received 100s of cards.

    We are so proud of David. He has overcome so much. After he had his SLE controlled he went to college. He’s a very hard worker. He's very good at his job. Most important he met & fell in love with the beautiful Beata.

    David will be fine on Monday. He knows how much he can push himself. He also has the thoughts of many wishing him well. Go David!
    Take Care.
    Jo
  • margjo said:
    I'm suppose to leave next week for a trip to Boston, my husband and 2 sons are running the Boston marathon. I was there last year at the finish line waiting for them when bombs went off. I have already said I won't be able to stand the hours required to see them finish. Not I'm debating if I should make the trip at all.
    I have had lower back pains for years, but I have gotten so use to it I work around it. That was until a new symptom started about 6 months ago. It's a lightening bolt type of pain that hits my lower spine and use to leave as fast as it arrived. I would get them once a week. When they increased in frequency I went to an orthopedic. Some of what my MRI showed,
    " severe narrowing on the report for L2-3.

    Maybe you could look into a scooter or light weight walker/ wheel chair ? There's no sense standing around in a crowd suffering. I know the marathon is now history but think about what you might do to make the next trip or event more bearable
    L5S1-Severe right sided posterior facet arthrosis. Is that arthritis?
    L5- 5mm degenerative neocyst versus synovial cyst to the extraforaminal portion of the right L5-S1 facet joint. I've only listed what states severe. There are multi level disc disc bulges with most severe on the right L5-S1 level." Among other things.
    He referred me to a pain specialist. That appointment is late May, possible epidurals. Orthopecic prescribed tramadol, 37.5 mg and acetaminophen, 325 mg. Can't say they help much.
    Over the past couple of weeks my lightening bolts of pain increased dramatically in power and frequency. One time it shot from spine to my foot. It almost feels like something very bad is going to happen. Doc said it's the nerves are being pressed.
    Now I'm not sure if I can do a flight and a "vacation" visiting family. Sure I want to spend time with our kids & grandkids but I'm beginning to see what I'm facing and don't know if I should go. I guess I would feel very guilty not being there.
    We made a trip a couple of months ago. At that time the lightening bolts were infrequent yet I did have one walking through the terminal on our return home. I yelled out loud and held onto a rail that was next to me.
    Sorry this was so long. How do you manage vacations or lack of that cause guilt trips instead.
    reid
  • Thanks for sharing his lovely story. He seems like a remarkable young man!
    Artificial disc at L5S1 for 10 years. Had 3 Level lumbar fusion and Laminectomy on Sept 27, 2013. It was an OLIF (Oblique Lumbar Interbody Fusion) with cages, BMP, rods & screws. Norco, Plaquenil
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