I'm scared that my stomach is acting up again. It hurts and I'm fearful that it will complicate this surgical recovery and I will be forced to stay longer in the hospital.
On a good note, my nurses have been very good today. Yesterday, I had a hard time with my nurse and the kindness of the nurses today has made such a difference. Steve is my rock. He held my hand because I was in so much pain from 3:30 AM on while sitting in the chair next to me. I know he wasn't able to sleep and I don't know what I'd do without him.
I have been told to exercise my lungs by blowing and sucking into different instruments. I have to blow into this about 30 times an hour:
I also have to suck into this:
The blue base rises the harder I suck and I am given a different goal for each day. As you can see I am at about 700 for today. This instrument is far more difficult for me than the other one.
My surgeons come in every morning and they all say I am doing well. I am working hard but am very discouraged right now. I love reading your comments and your support gives me strength during this difficult time.
Thanks for all of your kindness in sending me cards and offering to help with meals for Steve and Troy.
Marilynn -- Hope it is ok that Steve gave me access to your and Troy's blog. You are amazing, and how could you not be with all the love and cheers flowing your way! When discouragement tries to take hold, say "take that" and blow/suck harder than the last time....and you let us know if we need to intervene and deal with mean nurses! Judi
ReplyDeleteHang on! I remember mom saying many times "when I am at the end if my rope, I just have to tie a knot and hang on." Not exact but close! Sorry it's not a better day! Tomorrow will be better! Steve hang on too. Love you both.
ReplyDeleteDear Marilynn, So sorry to hear it is a rough day, but considering all your body is facing I would guess that is to be expected. Good things are ahead, you can press through this to happy times. So glad you have each other and so many cheering you on! Take care and keep up the good work. Love, Melissa
ReplyDeleteMarilynn, I am so sorry about how discouraging today is. When I was ill in the hospital after my appendix burst, the doctor was very arrogant and downright mean. He came in and told me I was in awful shape! I got out of bed with a nurse's help and walked more than I should have. I wanted to prove that I was not in terrible shape. The next day, I was extremely sick for overdoing the exercise. Your body has been through so much. I remember you telling me that when you discovered you had cancer, you had an impression that told you that there would be really hard times ahead, but it would be WORTH it! It may help to hold on to the thought that it will be worth it. You WILL recover and life will be good again.
ReplyDeleteIt helps me to see the pictures that you attach. You are in our prayers constantly.
Steve, we keep you in our prayers and both your names on our temple prayer roll.
Love,
Yvonne and Lamar
Marilynn,
ReplyDeleteI just want to thank you for your honesty. You are a women of great courage and I believe this blog will help many that are struggling. Thank you SO much.
Love,
Yvonne
Marilyn,
ReplyDeleteThank you for sharing with us how you are doing each day. As you know, Julie has had some big surgeries. It has been our experience that when people undergo big surgeries such as you have experienced, recovery does not proceed in a straight line toward improvement but rather undulates in peaks and valleys with a general upward trend. Yesterday you had a better day ( a peak); today you had a rough time (a valley). Tomorrow is likely to be better, with the pattern continuing for a while.
People in hospitals need a patient advocate; you have such a person in Steve, who is with you constantly right now. Each patient is different. Julie has a high tolerance for pain, but following surgery the normal pain killer prescribed for her is Percocet, which does nothing for her pain. We have learned to ask for Dilauded, a much stronger pain killer, which actually works for her. With the medical profession responding to regulatory pressure to cut back on the prescription of painkillers, you need to ask (demand, if necessary) for something stronger if what is being given you should prove to be insufficient for the pain. If you don't ask for it they will not give it to you on their own, because they will assume that you can tolerate the pain. Your healing will go much better if you should not be in great discomfort. Some discomfort is normal, but relief is available. Looking back, I wish that I had been more assertive on Julie's behalf with the medical staff during these kinds of challenges.
We used to think that the medical staff were the experts and put our trust in them and their judgment, but the fact is that you are a customer of the hospital. Like everything else in this world it is you or your advocate that ultimately has to look out for your own best interests. The medical staff will respond to your requests in most cases appropriately. I am sorry to say it, but there is great truth in the saying, "The squeaky wheel gets the grease". Now is the time to be assertive in letting the medical staff know what you need; your silence will be taken as a sign that you are doing O.K. even though you may not be.
Please know that we pray for you each day. As President Uchtdorf said in a General Conference talk a while ago with reference to bad economic times but applicable here as well, "Hold on a little longer. Bad times don't last forever." We shall pray for you to hit a peak tomorrow and for the valleys to be less steep as you go forward.
Love,
John and Julie
Dear Marilynn,
ReplyDeleteSeeing your equipment sure brings back memories of my trachea and lung surgeries. I certainly didn't enjoy using them and I was barely able to get the marker to move some days. I had to bring them home with me and continue for a long time.
Although our surgeries are different, I can relate to how it is to just feel lousy and not feel like yourself. I am truly sorry that you are going through this experience. I have had 16 different hospital stays and there are parts of the process that are so similar. It is important to give your body time to rest. It has been through something so difficult and needs time. Sometimes we want to get going sooner than is wise for the healing process.
On the other hand I found it good to move when I could, to walk even just a little when the doctor gives the okay. I was the funny lady always walking down the hall pulling my IV stand and hooked up to tubes and bags, but just getting to move a bit made me feel a little better. When I wasn't able to get out of bed I tried to exercise my ankles or move my bed position or body position around at least a bit to keep the blood flowing. Sometimes I could just sit in a chair for a few minutes, but I tried to sit near the window and do a little people watching or study the branches or sky outside my window.
The time can move slowly, especially when you are getting close to coming home. There is nothing better than home, especially when we can't be there for awhile.
I am grateful that you can feel God's love and the love of so many of your friends and family.
Love, Julie
Marilynn,
ReplyDeleteYou are so amazing. Thanks for sharing. I'm SO sorry you had a bad day today. I've heard the third day after surgery is the worst, so I PRAY it will be a better day tomorrow! My whole family is praying for you. Love, Julie J
Dear Marilynn,
ReplyDeleteI come home everyday from work and read your blog. I am so uplifted by others love and words of wisdom for you. When I was reading what Yvonne said...I didn't realize it was our sister writing her thoughts...I thought...wow whoever this is sure knows what to say and then I saw it was our sister!!!
Everyday close your eyes and go to one of your favorite places in your mind....say over and over in your mind positive affirmations. For example: I am a strong person, I am determined to get better. I can do hard things. At times it may be hard to feel the "peace" you have been permitted to feel occasionally but ask Heavenly Father to help you hold on to it. And just keep being "you". Thank you for sharing your thoughts and feelings....your strong times and your hard times...it means so much to all of us. I love you. Tammy
Hey Marilynn, Hope today is much better for you. I remember how it was for me the 3 times I was hospitalized. Hang in there and know that everyone is thinking of and praying for you. It really does get better-HONEST! The thing that helped me the most physically was to walk the halls several times a day. Find what works best for you! Would love to come see you as soon as your ready Michele B
ReplyDelete