Why I’ve not been posting…

I am beyond tired, so please have patience with me for not having updated the http://www.MastectomySolutions.com website in so long.  My sewing room is closed, I can’t even remember what it is like to get up and sew everyday.  I pretty much sleep, go back and forth to the hospital, and eat when I can remember to.  So far, my husband has lost over a hundred pounds with his illness, and I’ve lost 25 in taking care of him. I’ll never complain about anyone being overweight again, it has probably saved both our lives, just having that weight to lose and still survive.

Our happy life was going along pretty well until last summer when he got overheated a few times at work and ended up with pneumonia.  About the time he recovered and was out of the hospital for that, it was found he had gallbladder problems, so that was removed.  He improved slightly, but soon again weakened and had to go to the emergency room.  Next morning, he sat up on the side of the bed and had an ulcer that broke open (likely due to Naproxen) and he lost most all his blood but was blessed to have a team of doctors who saved his life and that was repaired successfully.  Various problems were found during that time that had been overlooked, and he has been treated for each ever since, including a lymphoma (diagnosed Christmas morning) that was caused by Humira (for Rheumatoid arthritis), but it turned out to be easily treatable, thank goodness. Seems like medicines have almost killed him.

He recovers somewhat from each thing, and we begin to think it’s over, then something else happens. He is an incredibly strong, gentle, patient man, and continues to fight this.  Every day, I go to him and help him exercise to keep up his strength as he recovers from a UTI, while being told by doctors who do not know him, how he may never come back fully from this because he has lost so much muscle tone and strength during recovery.  Many more of their dire predictions came about because of faulty equipment at the hospital, so I have gained a ‘reputation’ as a complainer, but hey, if I didn’t, he would not have the right care.

Because of his age, doctors tend to make more dire predictions anyway, it’s as if once you are past a certain age, they truly think it’s not worth their effort.  This makes life MUCH harder to bear, because in both his mind and mine, he WILL recover, his body will heal, and he will come home.  How many times during our lives have we been told something by doctors that turned out to be wrong?  Dozens.  How many times have we seen God’s hand in healing?  More than we can count.

I stand by my husband and continue to fight for him as his advocate.  This means that until somehow he recovers enough to not need constant medical care, I likely will not be sewing for my website readers.

It’s sad that these things happen, and that along with recovery, we also have to fight hospitals and insurance rules, etc..  I have fought to get him into a hospital in a larger town that provides more specialists in fields that he needs care, so he can recover faster, but the hospitals seem to block me at every turn.

If I only had to help my husband, it would be difficult enough, but I also have to function under many other hats and spend a lot of time trying to find solutions.  It took me two days once to convince them that his heart wasn’t about to go out at any moment as they predicted, because the heart monitor alarmed constantly.  Finally got them to replace the lead set I’d found with the broken wire, and voila, suddenly his heart was fine.

I was told once in ICU that his mind was gone and he’d never be able to communicate again, while his eyes were wildly trying to tell me not to listen to them!  Took days to get a nurse to clean the mucus blocking his throat, and afterward he recited the alphabet and then started counting, to show he was QUITE able to think and communicate. I have learned since how to do many jobs the nurses are supposed to do, because he shouldn’t have to wait for basic care.

They refused to hook up his CPAP that I’d brought once he was off the ventilator in those first days, so that time, for two days, he lay there saying ‘help me’ over and over…FINALLY got them to let me hook it up, and he dropped right off to sleep, exhausted, and was much recovered when he woke up a full 24 hours later.

Took weeks and weeks to get them to understand their pain medications were something he was having a bad reaction to and get it changed.  He simply is not able to tolerate certain meds that they consider common, he reacts the opposite to them than most do.

I could literally write a book on things that could actually have killed him if he didn’t have an aware advocate nearby.

Just have two messages I want to leave you with….one is to thank you for your patience, I will eventually be sewing again somehow.  The other is to say that you should never leave a family member alone too long at a hospital, and never just accept what you are told if you have reason to believe it isn’t so, doctors are not perfect, they only ‘practice’ their profession.  There are really good ones, and ones that are…less than compassionate.  Same with nurses, there are ANGELS, and there are some who need to go find other jobs. You will quickly learn the difference during a long stay.  I now know what days I can leave on errands and what days I can’t even go eat lunch.

Please, please, pray for my husband’s recovery and for me to keep strong.  God is in control, we are just doing the best that we can, day by day, moment by moment.  I love you all… and I know many of you are experiencing your own nightmares with hospitalizations and illnesses that feel as if they go on forever.  Feel free to tell about your situations, and any solutions you found.  Perhaps there will be messages that can help others as well.

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6 thoughts on “Why I’ve not been posting…

  1. Sharron Ruhlen

    Prayers coming your way. Don’t give up. My niece was in the same position with her husband and was his advocate. She was right more often than they were. Sending hugs and strength.

    Reply
  2. Pat Skene

    I’m so sorry you are going through such a difficult time Mary. All I can suggest is deep yoga breaths and try not to go from 0 to 60 in your thinking. Stay focused on today and enjoy the good moments when they come. Be well and take care of yourself. My best wishes to your husband.

    Reply
  3. Alice Schroeder

    Dear Mary, I realized a couple of months ago that I had not seen a post for some time and actually had you on my–really should e-mail list.  You can see how effective that is!!  I was so glad to hear that you are OK and very sorry to hear about all the health crises that have befallen your husband.  I will be thinking of you both and hoping for his full recovery.   I, too, react to many medications, and even artificial sweeteners, different than most people.  A pharmacist friend saw me react to scopolamine (taken to prevent sea sickness) and told me that there are two major ways your body marks foreign compounds to be degraded (and several minor ways).  And, it seems that between 10 and 20 percent of people have a defect in one or the other pathway, making them slow to breakdown a wide variety of compounds.  This means the compound stays in your body longer and at higher concentrations than expected and many of those nasty side effects show up.  Sometimes it means the active compound is one of the breakdown products you don’t make, so the positive effect of the drug does not happen.  One of the two main pathways adds an acetyl group (CH3CO) to mark the chemical to be broken down.  The other adds a chain of carbons with 2 hydrogens attached to each to the suspect molecule, called an alkyl group.  After listening to the list of things I react to, my friend was able to tell me that I almost certainly had a defect in one of those pathways.  After years of doctors brushing my symptoms off, now when I say “My pharmacist says I’m almost certainly a slow acetylator or  alkylator”, they listen and give me the lowest possible doses or a medication I know is not a problem.  You might take a list of medications and other compounds, like sweeteners, that are a problem for your husband to your pharmacist and see if he sees a pattern that suggests what is wrong.  Once you can say “Our pharmacist says….” you may find them listening much more closely.  In fact, I was allowed to have a colonoscopy without a sedative  (not much fun but better than having brain fog for the next three days!) and not to have a sedative–to relax me–not relaxing for me–before my mastectomy.  I’ve also been able to get the lowest possible novacaine and it’s relatives doses, so I don’t loose a whole day to lethergy and a foggy brain after a minor procedure. Hope this helps and keep fighting!  We are all looking forward to having you back in your sewing room with a healthy, happy husband by your side. Alice Schroeder

    From: MastectomySolutions To: aschroede2003@yahoo.com Sent: Saturday, February 18, 2017 7:13 AM Subject: [New post] Why I’ve not been posting… #yiv7413648640 a:hover {color:red;}#yiv7413648640 a {text-decoration:none;color:#0088cc;}#yiv7413648640 a.yiv7413648640primaryactionlink:link, #yiv7413648640 a.yiv7413648640primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv7413648640 a.yiv7413648640primaryactionlink:hover, #yiv7413648640 a.yiv7413648640primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv7413648640 WordPress.com | MastectomySolutions posted: “I am beyond tired, so please have patience with me for not having updated the http://www.MastectomySolutions.com website in so long.  My sewing room is closed, I can’t even remember what it is like to get up and sew everyday.  I pretty much sleep, go back and fo” | |

    Reply
    1. MastectomySolutions Post author

      OH MY GOODNESS! Thank you for writing! I can see how alike you and my husband are, as he ALSO cannot use artificial sweeteners and I’ve had tons of people think we are crazy for saying that. They keep trying to sneak them in on him, sigh… but his lips go numb and/or swell. I’m going to print out your note and talk to our pharmacist, that may solve a lot of our problems with some of the doctors about the meds he’s had a bad reaction to. THANK YOU for taking the time to tell me, you may have just made our lives easier at least on med problems!

      Reply
  4. Amy

    I’m so sorry to hear of your husband’s illness. You are so right that every hospital patient needs an advocate. Try to find time to take care of yourself. You can’t take care of him if you collapse.

    Reply

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