Thank You and Thankful for You

Thanksgiving week is over, I hope that everyone enjoyed platefuls of turkey and stuffing followed by a tryptophan induced nap and have survived the annual mass hysteria known as Black Friday.  In the spirit of gratitude, I’d like  to give a

online shopping, friday, gratitude
How I Black Friday.

big shout out and a big thank you to the people who support, help and encourage stroke survivors and other survivors to lead more productive, healthy and thriving lives.

I am fortunate to be surrounded by amazing family who are also my caregivers: My husband, My children, my sister And my mom. My mother and sister-in-law also give tremendous help and support.

Caregivers give so much, it seems impossible to tell them how much they are appreciated. Material things will not be enough to express our thanks. I know this list is short, I have wracked my brain for answers and I cannot seem to come up with something that would be able to truly express my gratitude.

The Turkey Trot has become a family tradition. The family that wobbles together… The boys run, the husband & I wobble.
    1. Say what you mean. Our caregivers are not mind readers, we sometimes feel that they “should” know what is it that we want or need. Try not to say things like “it would be nice if I had a warm blanket” or “ Is there anyone here who could get me some water?”. It might be hard to ask, specially for the simple things we used to be able to do. But being direct, but polite eliminates a lot of misunderstanding and resentment.

2. Give them space. The first year after the stroke specially the first six months, I was worried about being left alone. I also did not like going outside. My family was held “hostage” by my fear. Armando, my husband was still working full time, so he would put in 9 hour work days, then come home and take over for my mom to care for me.  The boys were busy with school, so they help out when they can. Armando was essentially “on” 24/7.  He needed a break. I managed to kick him out of the house to hang with friends before he burned out. Since then we have learned that having some time for ourselves is essential for our sanity. He now works from home, so getting some alone time is even more important. The people who take care of us, must also take care of themselves, be it some time at the gym or going out with friends.  Time when they can just breath and relax without  having to worry about pain levels, medications or cutting up food. 

3. Encourage them to join a support group.  As much as we need support and other people who understand & know how we feel, our caregivers need the same. They need other people to be a sounding board, to get new ideas from and most importantly a place where they could bitch about us (Ha!).

4.Give your recovery your best effort. We all want  to get back to our normal lives and to be able to do things on our own.  Our caregivers want the same for us. Armando beams with pride when he sees me working out or doing physical therapy. I know in my heart he is happy to see me working hard and trying. He posts more photos on Instagram than I do!  Our loved ones our caregivers have invested a lot of time with us and for us. I feel that watching us work hard, putting in the effort and slowly make our way back to recovery is as satisfying to them as it is to us.

5.Say “Thank You”. Seems obvious, I know.  But there are times I forget or worse yet, I take their help for granted. Sometimes I get caught up with my deficits and self pity I fail to see how much my family does for me. Our caregivers give us the support we need: emotionally and/or physically. Express gratitude often and openly.  This simple phrase means so much.

I know this list is short and inadequate. I cannot come up with anything that would be able to truly express how grateful I am. Do you have any ideas? If you are a caregiver, what is it that you would like?  Please let me know in the comments!


Much Love,

Momma Berna

Pain in the Ask

I have chronic pain. Some days are worse than others. I work hard on my recovery and sometimes I over do it and only a strong pain killer gives me relief. When I asked my Pain Management and Rehab doctor for a refill of my meds, he flat out refused. I waited a couple of days before I emailed Dr. K in order to avoid calling him an egotistic, arrogant, jerk-face (I’m keeping it PC 🙂
Last Monday, November 6, I went to Dr. K my PM&R doctor. It was a scheduled visit to get my Baclofen pump adjusted and get Botox shots for my arm. Dr. K was condescending from the get go. I told him about my frustration with the pump. He tells me, “It could always be removed”. The removal process is a major surgical procedure. As was the installation. He didn’t care to discuss what my frustration was nor did he suggest what could be done for improvement. Having had the pump for a year, I mentioned that I hoped that the pump would be effective enough that I would have been able to run a marathon by this time. I think the eye roll he tried to hide almost broke him. He was so incredibly dismissive.
He adjusted the pump and when I asked what the dose was, he just said “I increased it by 10%”. Thanks pal, you couldn’t have given me an actual dose? It felt as though he didn’t want to be there.
When I asked for the medication refill, he gave me this explanation “ Narcotic or opiate pain medication could alter pain receptors in the brain when taken on a regular basis.” He also said that “people tend to misuse them”. He suggested instead to increase another medication I am currently taking. Why would I want to increase my meds on a daily basis, if I only need to take a pain medicine once in a while? I was so upset when I left his office that day.
I was upset because Dr. K didn’t even look at my chart, had he done that he would see that the last time I filled my script was back in June. He made a generalization about me based on my request. I sent him an email a few days after my visit. I had to calm down, gather my thoughts and figure out what I wanted to say. In my email, told him I felt that he incorrectly assumed i will be abusing my meds, I have tried over the counter medicines and they have not helped. Pain increases my blood pressure – the cause of the stroke.
His reply included a blurb about opiates are not helpful long term for chronic pain. I felt once again that he completely ignored what I said. He recommended pain management courses and chronic pain support groups.
I am upset because I feel like I am begging for a better quality of life. I cannot prove or disprove the doctor’s perception that chronic pain sufferers have a tendency to abuse pain pills.
I understand what he is trying to do. There is a huge opioid addiction happening in the U.S right now and doctors are understandably cautious. He is protecting me from what could be a horrible addiction and he is also protecting himself.
In the meantime, people like me who suffer chronic pain are left to well…suffer. In the spirit of advocating for myself, I sent the email. I do not plan on using breathing exercises when I could hardly breath due to pain.I use alternate therapies, but sometimes only pain medication helps. I am in the process of looking for a different doctor. This recovery process is going to be a long road and I need people who are willing to support me along the way.