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Living With A Chronic Illness

Posted by Melissa Schmalenberger on January 18, 2013 in Family, life, Moms |

As many of you know, my middle son {age 17} was diagnosed with Crohns in October of 2012. Crohns is one of those illnesses that you have maybe heard about or know someone with it, but until you have a loved one diagnosed with it, you don’t really understand. It is a chronic illness, something that he will have to think about for the rest of his life. Something that as a 17 year old has forced him to already think about the path he is going to go in life. He now realizes at the age of 17 how important having good health insurance is. While his friends complain about having a cold he becomes frustrated that they are complaining about having a simple cold where his immunity is now compromised and a simple cold is no longer a simple cold to him. He now is very interested in political elections and how a candidates view on healthcare coverage is the most important issue when it comes to whether or not he supports the candidate. He now is concerned about student loan debt and whether he can afford to have student loans and be faced with a pre-existing medical condition and possibly no health care coverage.

During Christmas I received the best gift, some advice for me from a friend who also has his own chronic health condition. These bits of wisdom is what I am searching for as we go on this journey. Often I feel powerless and I do not know what actions I can take. I am the mother, I am suppose to take away all of my child’s obstacles. But what I am reminded of is quiet simple; I can’t take the obstacles away, only guide him on his path with love. We all have something in our life that we struggle with and grapple to get answers for. Our struggle isn’t unique to us and the advice we were given also is not unique just to us, I think others would like to get the same advice. I like to get advice that I can sink my teeth into. I like knowing that I am not powerless, and there are in fact things that I can do to make this easier for my son.

Be real and not too positive, so that he knows that you know that it sucks. I am one of those moms who has always been real with my kids and I don’t hide the truth from them. I always want them to know the facts and what their options are. I remember early on in the doctoring process my son looked at me and asked me why I was freaking out. My husband looked at me and then looked at my son and reassured him that I was not freaking out. Truth be told, I was freaking out….more on the inside than I let show on the outside. It was then that I realized I can’t hide my own feelings about how much this sucks. And sometimes when things in life suck, we just want someone to agree with us that this is one of those times that sucks.

Be positive and not too real, so that he knows that you are there for him and that you have his back always and that you will him to a better place. There is a fine line to walk with the information that we have and the information that we could potentially have. We are in a society where Web MD is at our finger tips 24/7 and sometimes having too much information is a bad thing. I no longer spend time researching endlessly about what this illness is. There are so many sources that when he was first diagnosed it was so overwhelming. I would freak myself out and that was doing nobody any good. Instead I have put my faith in our medical care and in a doctor that we trust. I will continue to search for alternatives while at the same time making changes in our families lifestyle. Talking to my son last night about Crohns, he reminded me that people die from Crohns. He knows that, he needs no reminding from me.

Be happy, even when your not, so he can see that it is possible to find the silver lining no matter how hidden it is. I realized early on that there is always someone who has it much worse than us. When you spend time in a medical facility you are reminded of that. We see a child with no hair asking the nurse over and over to promise not to hurt him. We have conversations with a guy in an elevator wearing shorts on a frigid Minnesota morning and he informs us that he has a bad case of shingles and clothing rubbing on his skin is painful. This is life and death up close and it can get ugly. Instead of us being sad, you will probably find my son reading a Dora the Explorer book with a bad Spanish accent while waiting for his IV to start. Not only making me laugh, but the other caregivers around him as well. My son and I have had some incredible moments together. He is the one who is usually making me cry tears of pride and joy. He will see me at a down time and tell me that he dedicated his improv show to me knowing how much time I am spending taking him to and from doctor appointments. He gets it. He is grateful, and I am too.

Be sad, that you can’t take his pain away, but be happy that you gave him the strength and the will to persevere. I am sad. This is hard to have someone you love struggle with this. I have sat in hospital rooms and hotel rooms while he slept and I had tears silently running down my face. I so want his pain to go away. I want him to get his energy back. I want him to gain weight. But I know that he is strong, often stronger than I am. He already has gained weight. He has already gained most of his energy back. He knows that he will get through this by creating his own path. He knows that he is strong and that I am there to hold his hand along the way, to cheer him up when he is down, to reassure him when he is in a place of doubt. He knows that stress makes Crohns worse, so he taught himself to knit and he even knit his girlfriend a pair of gloves for her Christmas gift. Right now we are both learning how to mediate so that we can relax even further. We look for things that we can do to make the situation better, not sit around and feel powerless and feel sorry. I am happy knowing that he can figure out things on his own. If you ever meet my son, ask him how Paul is. Paul is his bonsai tree that he waters and prunes with the utmost care…..because he learned that bonsai trees help with relaxation.

In this short time with this medical issue, I have learned a few tricks of my own. This is what I know I can do to make this easier for him.As a professional organizer/lawyer/mom I want to make sure that he has the best documentation. We talk about how his smartphone is his best tool for tracking of his symptoms and how important it is to keep track of things as they happen, not looking back and trying to remember. Here are some tips that we have started using to make this easier for us.

  • He now has an excel spreadsheet on his phone that he uses for tracking when he has flares or other side effects. An excel spreadsheet is easy to search and navigate.
  • If he is on medications he can take pictures of the bottles of medicine to refer back when asked what kind of meds he is on and the dosage.
  • With the ability to zoom in and focus on even the tiniest of writing, a picture on a cell phone suddenly turns into a magnifying glass. 
  • Pictures of his health insurance card with policy numbers and contact information.
  • Contact information and names for the health care professionals that we are working with saved in his contact list.
  • Clinic ID numbers saved as a note.
  • Taking his medical information and scanning it into my computer and storing it on SkyDrive (in the cloud storage) so that we can both access it when in a doctors office from our phone. A new portable scanner was ordered yesterday and will be here within a few days and we will get everything scanned in and ready to go while at home or on the go.

I go back to this, because as much as I want to take this illness and make it mine not his. I know that he is the one who will have to learn to navigate with it. So I now sit with him at doctor appointments and I let him do the talking. Watching him grow into his own advocate, and I am proud and in fact those tears now are ones of pride and joy.

To Joyful, Simplified Living,

MS. Simplicity

 

MS. Simplicity, also known as Melissa Schmalenberger operates her business as I Did it with MS. Simplicity. She is a Professional Organizer based out of Fargo, ND and her website can be found at http://www.mssimplicity.com/

 

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12 Comments

  • Avatar of Eddie Bashaw Eddie Bashaw says:

    Good Luck to your son and I wish you both the best of luck.

  • MariKay says:

    Oh, my, do I understand this story. My now 20 yr. old daughter was diagnosed 5 years ago with Ehlers/Danlos Syndrome. Never heard of it? Well, neither had most doctors in MN! As a mom I struggle with the realization that in hindsight: She has lived with a level of pain her entire life that we just didn’t understand. She takes many medications, and has at least 8 side diagnoses that follow along with her main diagnosis. Tell your son to stay strong, and yes, it is alright for MOM to nag sometimes.

  • Amy says:

    Coming from a Crohn’s patient – I totally understand where you & your son are coming from! I was diagnosed with Crohn’s when I was 16 and am now 41 – Been through alot of UPS & More Downs but look at life positively and try and let yourself know you can deal wtih this and adapt in life as there is always others out there worse then you even though when the pain is bad or you are having multiply surgeries that I have had and constantly seeing Dr. after Dr. and the lovely X-rays that they put you through – Life is a struggle but trust me there is Light at the end of the tunnel! MAny times I just asked to die but it is meant for me to be still living because I try to stay positive and have positive people around me that give great support! I have only 12 feet left and and keeping track of all the issues is a positive soulution, also accepting it and that you know what you need to do for you!For my medication side it has taken along time but research has come along way and now I have IV therapy every 7 weeks (Remicade) and only take a multi vitamin – use to take up to 32 different meds. Stay Strong and know that when the Battle is tough you can & will take charge of it! Great to hear your son has a girlfriend as it took me til I was in the 20′s before adapting to sharing with a significant other. I am now involved in a serious relationship & happy! Also, there are alot of Books out that but correct spelling is CROHN’s!
    Hats off to your Son’s Future and he will show you How strong he really is!
    Best Of LUCK!
    Amy

  • Dan Flicker says:

    I’ve read your article on Chrons. I tried looking it up on the internet and cannot find anything on Chrons. There are many articles on Crohns that were found. I have Crohns and am wondering if that is the disease you were trying to discuss in the article. If so, please refer to the correct spelling. We need more people to be knowledgeable about Crohns. Thank you for the article but I’m hoping people will know that is was actually Crohns you were discussing.

  • Everhope says:

    I can relate to this also, I have a sis-in-law with Chrons, and I was diagnosed with Lupus a few years ago. Sometimes I think if one more person says “you don’t look sick” I will lose it. But I have to keep my sense of humor. Thankfully there are a lot more resources out there,and I hope your son finds all the support he needs.

  • Sherry says:

    I too have a 21 yr old son with Crohns and I see many similarities in your story to mine. I believe that as a result of his illness and past suffering, his relationship with his father and I is much stronger than it might have been. We are also so very proud of his growth and maturity. Your son and your relationship sounds amazing. What a wonderful article and I appreciate the great tips!

  • Del Rae Williams says:

    As another Crohn’s person, I thought I’d weigh in. I suspect I was 17 when I first had it, but they really didn’t diagnose it then. Xrays said I hundreds of little ‘ulcers’. I am currently 54 and was diagnosed officially in 1995. I am a weekly shot of Humira (had used Remicade until it quit working). What I wanted to add was that your son can have a perfectly amazing life. While he has and will continue to adjust for it, there is really no reason that he can’t do everything he and you dream he will. I enjoyed college to the fullest, married, have two children, had my own business, and practiced as a CPA for decades. While he will live with the reality of Crohn’s, the best advice I can give you and your son is live life despite it. The very best to you and your son. I hope he regains his strength and vigor soon. He sounds like an amazing young man with an equally amazing mom.

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