Quick update before I get too deep into today’s post: I haven’t had much motivation here lately. This week I’ve been able to get in several “full” days of work… which makes me happy… but it also makes me tired. I’ve been slowly working on part three of my comic for my diagnosis story (see parts one and two).
Yesterday I had my first post-op visit. The surgeon looked me over, was very pleased with my progress and took the bridge out from under my stoma. He told me to keep walking, keep eating and that he’d like to see me in three weeks. My husband and I made the appointment and then we came home to change my appliance for the SECOND time. It was more stressful than the first time. Though I hadn’t had anything to eat for several hours, Peeves decided to start spitting up every 5 minutes (it takes us awhile to get everything cleaned and placed… we’re still new to this afterall!). Afterward, we ordered takeout and watched a movie. A little “reward” for having a frustrating time with Peeves. Oh, and for those of you who may be new and don’t know who Peeves is… Peeves is my stoma. I am so thankful to have my husband, Dave, help me. I honestly am not sure how I’m going to change my appliance by myself yet! He’s been such a big help…
And this brings me to the subject of this post: Caregivers. Over the past two weeks I have been realizing just how blessed I am to have such good caregivers in my life. I have been helpless, confused, afraid, learning how to take care of my new plumbing, weak, annoyed, angry, frustrated, etc. etc. over these past two weeks. If it hadn’t been for the amazing caregivers in my life, I think I would have gone crazy by now.
First I want to give a shout out to those caregivers who have supported me with encouraging words, visits, prayers, cards and gifts. You have helped fuel my resolve to keep fighting time and again. Thank you for being there.
Next, I want to say thank you to the nurses who took care of me in the hospital. They were helpful, attentive and very kind (even though I had difficult veins, nearly passed out twice and had other things they had to be careful of – I was a “difficult” patient as far as care goes). I always try to be kind to my nurses… even the less-than-wonderful ones. Not only because my health is in their hands and they probably know more than a dozen ways to kill me if I annoy them… but also because they are people too. They have lives and personal things going on. I don’t think there should ever be a time where we should be unkind to our doctors and nurses. Be firm with them if need be, yes! But be kind always.
I love, love love my family and appreciate every single one of them who came to support me and stay with me while I was in the hospital recovering. They slept on that lumpy hospital couch and endured not only the nurses coming to wake me every few hours… but they also endured me asking for help going to the bathroom or sitting upright. I have a great family.
I have an AWESOME surgeon. He’s very professional, funny and knowledgeable. Unlike some doctors I’ve had in the past, I feel like he truly listens to me and wants the best for me.
I want to also give a HUGE shout-out to my ostomy nurse, Jacque, who is super helpful and awesome. She’s very good at her job and I love her to death. She has calmed my fears on numerous occasions and even endured me sending gross picture text messages of my stoma to her. 🙂
Finally there’s Dave. My loving husband. He has truly proven himself and the truth in the vows he made to me when he married me… “For better, for worse… in sickness, and in health.” He is an amazing man with such strength of character I have never seen before. There have been times I was unkind, rude, hard to live with, but he has stood by my side anyway. I often think that the caregivers have the harder end of the bargain. They endure a lot of emotional/mental torment while they watch their loved ones suffer. There’s nothing they can do to truly “help.” Not only do they have to watch helplessly, they also must wait on the patients, pick up the slack in chores when the patients are recovering (on top of their own responsibilities) and they have to fight with medical stuff (insurance, bad nurses, bad doctors, etc.).
All this being said, if you are a sufferer of a chronic disease, please keep in mind who your caregivers are. Be kind to them. Treat them with the respect they deserve… yes, your circumstances are hard, painful and frustrating… but put yourself in your caregiver’s shoes. What if you were watching your daughter/mother/husband/etc. suffering and there was nothing you could do about it? What if you were left with the extra responsibilities while that person is suffering? What if you had to endure your loved one not getting the proper care they needed and had to fight to get it taken care of?
Ok, I’m done with my rant. I hope all of you are doing well. You are in my daily prayers… Take care!!!
Thank you for sharing your stories. I have often felt so alone with this disease, how can I hurt so bad on the inside and yet from the outside I look fine. It's not just the gut area either. This disease has hit so many other areas either directly or as a side effect from the medicinal treatments – PREDNISONE ANYONE.
I do not blog I just love following some who do. I do have a degree in journalism so maybe once I retire, finish getting my child through college I will consider it.
Wow, Debbie! Your story really touched me and brought tears to my eyes. Bless your heart. There are so many people out there with stories just as "tragic" as yours. I know that my case wasn't as severe as many others out there, which really humbles me and makes me thankful to be where I am. Thank you so much for sharing your story. Your story is very inspirational. It is SO hard not to take it out on our caregivers… But I get it! I can't tell you how many times I've been horrible to my husband. I am so glad that I have found all this support online of people who truly understand my situation. Thank you again for sharing your story. It's so beautiful. Do you blog at all??? If not, you really should.
I could not agree with this blog post more. Every paragraph I shook my head and said to myself, that was me, this is me, that happened to me. The tears came when you spoke of your husband because it was exactly the same as mine. Being sick since Christmas 2013 I was angry that I needed surgery that I couldn't beat Crohn's with drugs or changes and I took it out on him, I mean I unloaded both barrels.. Looking back I didn't blame him I was mad that he wasn't home, he has been gone for 9 months over the past year for work. When I ended up in the ER again in February he was on a plane home and didn't care if it cost him his a job. With our only child just starting college, I did but that's me the worrier. He stayed home for 2 weeks because he wanted to make sur everything was in place for the surgery I could no longer deny. When the surgery date came 3/11, he was back home and did not leave until he was sure with his own eyes and heart, not what I said, able to take care of myself again. He was at the hospital every day even with having to take car of the house, the dog and working as much as he could via email and conference calls.
The moment I fell in love with my husband all over again was when they told me I needed a NG tube. I begged him to stay as they shoved the tube up my nose and I cried my eyes out. (It was uncomfortable but my tears were more of anger that I was in the situation). I looked over at him and a tear came down his cheek. When it was over I was so upset that I selfishly made him watch that and kept apologizing to him. He told me his tears weren't because he was watching, it was because he wished with all his heart he could have done anything to avoid needing the tube. He called me a hero and stronger person than he ever was because he could never have gone through that. I asked him for one more favor to stay a little longer and hold my hand so I could calm down. I started to doze off he kissed me and whispered before he left, you really are badass!