Tuesday, August 6, 2013

You Want Me To Do What??

 I took my honey to his GP, yesterday (it was a struggle, but he finally agreed to go...in an attempt to find out why he feels so bad.)

(1) On Friday, his Blood Glucose was 263 and daughter Gale (nurse) gave him Insulin. (In the hospital, insulin is given if it is over 150.) Said GP got irritated and told me I was "premature" in doing this. So.....here's what he advised: Increase his oral med (from 2.5 mg to 5 mg), take Blood Sugar twice each day....and if it's over 250, give insulin.  Isn't that what we did? (Except that we didn't increase the oral med.)

(2) Several months ago, we were having issues with Bob's Blood Pressure dropping. He was on a "check BP and if the Systolic (top) is over 150 give BP med, and if it's below 150, do nothing" plan. (Another GP had us doing this.) This GP (we changed docs) did not like that plan, so put him on a med to bring his BP up and I could understand this. When it finally got back to what I considered "normal," I discontinued the drug. Yesterday, when I revealed that to the GP......I was told I need to ALWAYS give him the drug to bring the BP up...and if it's over 150, give him his BP med to bring it down! So, the BP is now in a normal range and I'm going to give meds to cause it to go up and then give him meds to cause it to go down.  What????? How is that different from what I was doing....except I wasn't pushing it up (it has not been low, for months). This morning, the systolic was 122, and I really had a hard time giving him a little white pill to make it go up.

 (3) GP advised that my honey's meds for anxiety/depression should be increased, and my thoughts were......."if we keep seeing you, I'll need to have my own increased!"

(4) An antibiotic was prescribed for the bacteria and mucus, found in his kidneys. I'm hoping this is the reason he has been feeling so bad. If so, it was worth the trip!

I'm not trying to play "doctor" as I was once told, by a friend. I just have enough sense to question what sounds unreasonable or ridiculous. Too bad that our good Dr. H. isn't a Hemoc/GP!! 

My honey told me last night, as we were getting close to sleep....."I was praying that you and that doctor weren't going to get into a fight.....I could see the hairs standing up, on the back of your neck."  (Next time, he may not let me go with him!)

We appreciate your comments.......


  1. dear sarah,

    I am so sorry that you had all the folderol with dr. GP. you must have come away shaking your head - or maybe holding onto the top of your head to keep is from blowing off! just hoping everything will come together so that bob feels BETTER. perhaps the anti-depressant being increased will also help with pain as well as his B/P - as in, feeling better, moving around more and the natural regulators getting the message that his B/P can stand to be a bit higher.

    i hope you are taking good care of yourself as well, sarah - being the CG ain't always Saturday parades and pink ponys. it's hard, exhausting emotionally and physically. and since you were such a good girl and did not end up in fisticuffs and/or expletives with the doctor - i think you deserve a special treat!

    much love, XOXO

    Karen (Sutherland)

  2. Hey my sweet girl...I always love when you comment! You are in my thoughts, continuously, as you head toward Friday and your surgery. I do hope everything goes well. Please ask your sweet son to post something, so we'll know how you are.

    Hugs and much love....and prayers.


  3. Hello there. Oh dear! Just catching up. I wish I had words of wisdom but it sounds to me like you are being expected to make lots of judgements and assessments that I would have expected the doctor to be in charge of. Maybe you should ask them to write down exactly how they want you to balance the various drugs, so they can't change their mind later and blame you?
    Take care of yourself too. That's very very important!
    Hugs from afar.

  4. At the end of the day Mrs. Sarah, you know Mr. Bob better than anyone in this world. His health and well being is more important to you than some specialist anyway, so I say question the hell out of them and make them explain their reasoning behind such idiocy! You two have been on my mind this week. You are both in my prayers. Love sent to you both.

    P.S. Sorry for the ugly word but doctors tick me off sometime.

  5. Dear Sarah,

    my mom sent me your post "Patient or Caregiver," which is how I found your blog. Hello, my name is Eva. My husband, Joseph (39), was diagnosed with F*&%$#G Multiple Myeloma on his birthday, just a few weeks ago. He spent ten days in the hospital recovering from renal failure. He had ALL the classic Sx of MM, but it took nearly five months for anyone to catch on. We will be getting his prognosis on October 4, but we've already been told it's stage III (although I believe the staging system is becoming obsolete??). His platelets were around 50% and he has fractures in his spine and lesions over his entire skeleton. Did I mention he's frigging 39 years old?! I've spent the last three weeks swinging from grief to rage. I just turned 37 and became a fulltime caretaker. I am about to finish my second master's degree and don't care. I can't think about anything but him. I am so exhausted all the time and horrified about our finances (Jos is the primary wage earner). The hardest thing is not being sure if I should prepare to let him go or "fight" for hope. I lost my friend. Between the pain and the fatigue it is difficult for him to hold a conversation with me. Oh, and hiccups. Yeah, debilitating hiccups from the Dex (his Hematologist started him on Velcade/Dex/Cyclophos almost as soon as his kidneys perked back up. Apparently one of the side effects is hiccups. F-ING MM!! And now, now have a parade of humanity tromping through our calendar having a phone war with themselves (via me!!!) about the actual doctor's orders. His hematologist had to make adjustments to his course of treatment because of Jos' kidneys, but wants him on the same program as SCCA. Somehow, the many people involved on the team can't seem to get that. I've torn up 7 (7!!!!) calendars because of this, and all I can think is my husband's life is on the line and they can't call each other?! Anywho, I get the GP-rage... my husband's fired him because "he's too complicated for us." Jerk. And where the hell are all the chaplains who insisted they would call?? Jerks. Ok, I'm angry. I'm a wife and a caretaker, and I'm angry. I'm sad. I don't want him to die.

    1. Hi Evangelina,
      It's obviously been months since your entry; but I pray things are better for you and your husband. MM was known to impact older adults, but over the years, patients are being diagnosed even younger. I was 33 when I received my diagnosis Sept 30, 2009. I'll be 38 this year, and I can't believe it's been 4 years. I'm a mother of 2 boys (8 &11), and I work full-time. Sounds like you have your husband's best interest at heart, and I know that having support of family /friends can make a huge difference. My husband has been my lifeline since day 1, and b/c of him and my faith, I know that this too shall pass. What does that mean? For me, it means that I'll find a way to do what I want with a new sense of "normal". It's now normal for me to take meds every morning/ night. I've learned to give myself shots. It's now normal for me to receive weekly chemo 3 weeks a month, it means it's normal for me to wear a mask when I fly, try not to shake hands; and my children know they must wash they're hands when the enter our home. Believe me, I get tired of all of the above - but I've also kept living and doing what I enjoy. Trips to the Caribbean, Vegas, amusement parks, road trips, school plays, date nights etc. I had a stem cell transplant in 2010, but have never experienced remission YET. So instead of waiting for doctors to tell me I'm in remission, I live like I am. When I have pain, I sit my butt down. If I get a fever/ feel ill, I go see the doctor. But when that passes, I'm back at it :) Your husband has age on his side, and I'm sure you're encouraging him all the while.
      Keep keeping on. Ask questions/ get answers, and encourage each other daily!

  6. Hi there Sarah! I just stopped by and had a quick question about your blog. Could you please email me back when you get the chance? Thanks : ) emilywalsh688 (at) gmail.com-


  7. Hi Sarah, I found your blog and realized I needed to reach out. MM can cause a lot of questions about what is right or wrong and you did the right thing! Please email me when you see this, as I'd like to extend the conversation. I can be reached at mtrucillo(at)recallcenter(dot)com. Thanks!

  8. maggie.danhakl@healthline.comMarch 27, 2014 at 3:21 PM

    Hi Sarah,

    Healthline just designed a virtual guide of the effects of chemotherapy on the body. You can see the infographic here: http://www.healthline.com/health/cancer/effects-on-body

    This is valuable med-reviewed information that can help a person understand the side effects they are experiencing from their chemo treatment. I thought this would be of interest to your audience, and I’m writing to see if you would include this as a resource on your page: http://ourjourneywithmm.blogspot.com/

    If you do not believe this would be a good fit for a resource on your site, even sharing this on your social communities would be a great alternative to help get the word out.

    Thanks so much for taking the time to review. Please let me know your thoughts and if I can answer any questions for you.

    All the best,
    Maggie Danhakl • Assistant Marketing Manager
    p: 415-281-3124 f: 415-281-3199

    Healthline • The Power of Intelligent Health
    660 Third Street, San Francisco, CA 94107
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