Tag Archives: chronic illnesses

Stuck in a Negative Spell & Attitude

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“Grieving”

July 16, 2013

Normally I am a very optimistic person.  Throughout my life, I dealt with many major, difficult events that required life adjustments.  Going through a grieving process—denial, anger, depression, bargaining–often accompanies the life adjustments.  Somehow I always managed to plow forward through the process rather quickly, restoring a positive attitude and looking for that silver lining.

People have often remarked what an inspiration I am and how well I do. But lately, not this time.  I have been stuck in one of those negative spells, with a negative attitude.  In April, I developed complications from a UTI, got a virus, and had an allergic reaction to an antibiotic all at the same time.  The perfect storm stirred up my MS to the point that left me completely incapacitated. I was admitted into the hospital.

Fortunately, after weeks of treatment and home care therapy, the infections and sickness went away and the MS calmed down.  Physically, I returned to my previous pre-relapse “normal” state.  But having the weeks of downtime and being incapacitated shook me to the core. My mental and emotional state didn’t rebound so easily. Every day I got out of bed and went through the motions of life, but with no smiles or enthusiasm. I was  existing without any happiness. My emotions were erratic and unpredictable.  Nothing was fun or funny.

I was grieving.

I was sick of being sick of being sick and tired of being tired.  Too many times over too many years of problem solving and adjusting.  My mind shut down; it was hard to think, which is what I always seem to do.  Think.

Everything in my life has to be planned and organized around my bathroom problems, medications, accessibility needs, physical limitations, fatigue, waiting for others to help me with something… And every thing I do takes so long to do.  Sometimes it’s just not worth the effort. Everything is a production.

This coming September, I have a trip planned to Alaska.  While “normal” people are looking forward to the cruise, food and excursions, I am dreading it all.  I worry about embarrassing myself with a bathroom accident.  Or, what will I do if I get a serious UTI, since I am resistant to oral antibiotics?  I have to plan to try and prevent these things from happening.  It is exasperating.

On the other side of the coin, so often I have to cancel my laborious plans because I don’t feel well, am too fatigued, maybe didn’t sleep well, require a laxative…  I have to plan, but other times I can’t plan something because of some physical or accessible limitation. It drives me crazy.  I can’t be spontaneous about anything.

Over the years, one reason I have kept a personal journal was to vent my sadness, stress or frustration.  Here are a couple of entries made during this bad spell:

“I wish I could just have 24 hours of being a normal person with no physical problems. To sleep through the night without waking up because of a cramp, a spasm, a pain, or to have to pee.  To not wake up tired after being in bed for eight hours. To sit down and pee without the hassle of using a catheter. To have a bowel movement without worrying about if I am going to go, or if I am going to get to the commode in time.  To eat whatever I want without bloating, gas… To have a day with no pain, or edema.  To be able to walk.  To have a day when I could everything myself without waiting or depending on someone to help me. To not have to worry about changing or cancelling plans because I am too tired.  To not drop things.  To be able to jump in the car and drive someplace alone. “

“Life is a journey as people often say.  But why is it that some people just seem to cruise through life?  Sometimes I feel like I’ve been travelling on some bumpy, dirt road never knowing when an obstacle will pop up.  It always does.  A flat tire.  A dead end.  A detour.  Overheated.  A breakdown.  Out of gas.  An unmarked fork in the road—which way to go?  Stuck in a rut.”

In the past, I always reached out somewhere, like counseling, to get me through my grieving.  Grieving isn’t a bad thing; it is a coping mechanism.  But grieving too long is not good.  It will crush your mind, body and spirit.  I wasn’t reaching out this time and I was getting crushed.

Two things happened over the past month that broke me out of this spell and helped me heal my spirit. The first thing was that a lost dog appeared in front on our house late one evening, barking incessantly.  This dog was a clone of my beloved companion Bear that died exactly a year earlier, both in looks and personality.  After a month of unsuccessfully locating the owner of this lovable one-year old pup, we adopted “Grizzly”, aka “Little Bear” as we named him.

Second, I came across an article about positivity that I saved from earlier this year.  It was also a catalyst that started me thinking healthy thoughts again.  I’m posting it today on my blog after I post this article so that it may inspire others as it inspired me.

Divine intervention?  I think so.  Faith, hope and love are so powerful.  They pulled me out of the deep, dark hole I fell into and got me over my grieving.  I’m moving forward again with a positive outlook and I’m smiling again on the inside and out. 

www.DebbieMS.com

Office Visits with your Neurologist

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“Good Advice for Being Prepared”

December 10, 2012

Not having enough time with your neurologist or feeling that you didn’t get your questions answered is a common complaint by patients today. Often we blame the doctor and his/her office but there is the other side of the story—the doctor’s!

Be Prepared!: How to make the most of office time with your neurologist… is an article worth reading. Written by Avitzur, Orly M.D., M.B.A., it was printed in the current issue of Neurology Now—the American Academy of Neurologists Magazine for Patients and Caregivers.   http://bit.ly/QSp1uH  I’m taking the liberty of sharing this via by blog, since you are my friends I am given the option by them to share this with my friends :).

Finding a neurologist that you are comfortable with, one having high credentials/reviews, and one that has a specialty in your particular chronic condition is essential. After you read this article, ask yourself: do you do this before your visit, and does the doctor respond in the way this doctor suggests?

For those of you not familiar with the magazine Neurology Now, you take a look at it online and subscribe to it for free. While it addresses many neurological disorders, I have found useful information relating to multiple sclerosis for myself. And other things like Parkinson’s disease that my friends have…

www.DebbieMS.com

The Ultimate Doctor

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“Are You Happy with Yours?”

September 24, 2012

Two days before leaving on an out-of-state vacation recently, I started having the classic symptoms of a urinary tract infection (UTI). Increased spasticity, cloudy urine, frequent urination, burning. Within a day, the symptoms intensified and worsened; my bladder medication wasn’t working and I was leaking urine uncontrollably. The heat I felt from a slight fever contributed to the mayhem of it all.

Now bladder infections are nothing to mess around with, especially if you have MS. An infection like this not only is bothersome, but more importantly, it is painful and can quickly lead to trouble like a relapse and/or kidney problems. It needs to be addressed quickly.

Having dealt with bladder problems for over two decades and having to use self cathing to void, I know what to look for and what to do. But of course, I need my doctor to get me on an antibiotic ASAP.

It was a Sunday, and I was to leave on Monday. I called the office’s answering service, explained my situation, and requested the on-call doctor to contact me. I received a call within a half of an hour from the doctor. After a brief discussion, a prescription was called into my pharmacy immediately and I had the antibiotic in my hands soon after.

Now THAT’s a good doctor. To me, anyway!

Of course I had been a patient at the office for years, but nevertheless, he addressed my problem with no hassle or waiting. But, even if I wasn’t leaving on a trip the next day, the office has worked with me on this issue before. With past UTI’s, the office helps me on the same day that I call. I know how to take a “clean-catch” urine sample at home, take it to the office for a “squeezed-in” appointment that lasts no longer than five or ten minutes, and once verified that there is a bacteria, I get a script.

Having excellent physicians when living with a chronic illness is essential. It’s a lifetime relationship that requires frequent and unexpected visits, not a once-a-year annual checkup. I have doctors that I know rank in the top 10%. And I have doctors that treat many other MS patients and understand MS.

Now when it comes finding a physician, it is an individual and personal decision. By that I mean that one has to decide what he/she wants from their doctor and what the relationship needs to be. Find doctors and professionals that treat others with MS and fit your personality.

I’ll use myself as an example. I don’t want a hand holder; I want someone I can consult with. I am not a whiner and when I call, that means I need help ASAP. I want called back that day, action within a day. I don’t want to be dragged into the office when I’m too sick to get out of bed. When I go into the office, I don’t want to wait an hour. I’ve got a fatigue problem. I want to talk to my doctor, not the receptionist. I want my doctor to be connected with the latest studies and research.

Are you happy with your physician(s)? If not, it’s time to move on and find another one. You are in charge, not the doctor. You hired the doctor, and if you are not getting satisfaction, fire him/her and get another one.

Ask yourself what you want/need from the doctor and the office, such as good bedside manners; prompt responses; office visits; follow ups; experience; reviews. Interview the office/doctor before you make the first appointment.

So how do you find a good doctor? Get referrals from: a doctor you currently have that you do like, your local MS Society Chapter, family, people you know in the health field, and other MSers. Check their background and credentials on the internet. Two websites I use are www.vitals.com and www.healthgrades.com, but there are others; you can do a Google search using a phrase like “doctor reviews and credentials” to get other websites.

Finally, a couple of other tips:

• Go to the office or call on the phone prepared. Have your questions written down, have your problems written down with specifics. You will only have fifteen minutes with your doctor, if that. Don’t expect to be educated by the doctor. Expect answers to your questions. If you have a lot to talk about, schedule a longer appointment.

• If you have MS: Realistically, the most your doctor will do for you is to prescribe medications for symptoms, encourage disease modifying agents and make recommendations to other professionals (urologists, therapists…). Don’t allow yourself to feel pressured into anything you don’t want to take or do.

• You need to feel that you trust your doctor.

www.DebbieMS.com

Medical Marijuana for Pain

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“It’s My Body”
August 20, 2012

 
It was the “burning to the bone” and “knives in my back” pain that provoked me to call my friend to get me some medical marijuana last night. I just went through a week of incredible stress—physical, mental and emotional—and the pain in my back is excruciating.

 
It is amazing how marijuana takes the edge off pain and gives me relief. Sure, there are pain medications like Vicodin or Percocet available, but I personally choose not to go that route since narcotics are addicting, cause constipation, and mess up my head and mental clarity.

 

Having advanced Multiple Sclerosis causes me to have pain from many factors:

*stress/tension
*spasticity
*posture
*stressed body parts
*nerve damage

I use a wheelchair, so the long hours of sitting intensify these problems. During the past week, out-of-state family came to visit and stayed at my house. Even though they pitched in to help, I was out of my daily regime of intermittent resting and exercising.

The stress from so much confusion/activity under my roof intensified my muscles to tighten, posture/spasticity to worsen, depression and moodiness to set in.

My usual relaxation techniques of deep breathing and Yoga did not de-stress me this past week. Then the barometer dropped and the rains came, increasing the pain even more. There’s no way to escape Mother Nature. If any doctor or researcher tells me that rain, barometric pressure swings and humidity coupled with heat does not affect a person’s multiple sclerosis, I say “bull crap.” I know my body and I know how I feel.

Pain is transmitted by nerves, and pain from nerve damage is different from the other types of pain. It doesn’t originate from muscles or bones, but from the central nervous system as nerve pathways are damaged by the MS lesions. This pain has been described as burning, aching, or stabbing. Sometimes there are prickly or itching sensations. Sometimes sensations get “mixed up”, where pain can be caused by the clothing that is worn. People who have had shingles can relate to this kind of pain.
After over thirty years of living with MS, I’ve accumulated a lot of nerve damage. When pain occurs from nerve damage, forget the aspirin or Ben-gay or any other over-the-counter meds. It just doesn’t work. Often, a couple of shots of scotch or ice packs will deaden the pain for me, but not always.

 
Chronic pain interferes with life physically and emotionally. Not only is pain depressing; it causes one to become agitated affecting concentration, memory, and being civil to people.

 
I tried medical marijuana before, and it definitely takes the edge off the pain for me. I’m not a regular user; I use it when all else fails. The way I see it, I’d rather take a few puffs of a joint than take a boatload of pain killers or alcohol.

 
Personally, I don’t care if it is illegal. The voters here in Arizona said “Yes!” to medical marijuana at the last election. But the state is fighting the path to go forward with it because it is illegal at the federal level. And the haggling will go on and on because government really doesn’t want to legalize it. But they will turn the cheek the other way to the dangers of texting or using cell phones while driving in this state. Or do nothing about the abuse of prescriptions for narcotics by doctors. How stupid is that?

 
So I have joined the underground. There are ways to get it and hide it. I have shed my good-girl image and doing what I have to do. If the cops want to arrest me over a joint, then that’s a chance I will take. But they have to catch me first and I am pretty clever.
I’m getting relief in the privacy of my home and not bothering anybody.

It’s my body and it’s my choice.


www.DebbieMS.com

Managing Overwhelming Circumstances

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“Speak Up, Nicely.”

August 13, 2012

It was 117 degrees yesterday, and the weather prediction doesn’t expect the temperature to go down much over the next week. My family from out-of-state is staying with us for the next ten days. Between the heat, fatigue and overwhelming activities under my roof, will I manage? Yes.

How? I learned when to say “yes”, “no”, and “would you please…”

This wasn’t something that came easy to me when I was diagnosed with MS. I was always a very independent person, offering my help to others. It took a long time to use these words in the right manner and circumstance. After all, we are talking about a change in behavior. Changes in behavior do not happen overnight, but it can happen if you want them to.

For me, it wasn’t a conscientious decision on my part to ask for help, accept help, or set limitations. The mounting of excessive fatigue and other interfering symptoms forced me. If I didn’t succumb to changing my behavior in this way, I would not have survived my MS.

Not only is it essential to me, it’s essential for my friends and family, too. In the beginning, they wanted to help, but were cautious about what to do. So I learned to open my mouth in the correct way. I set the tone: if I am comfortable, they are comfortable. If I tell them what I need (or don’t need), or what to do (or not do), they are glad for it. Everyone benefits.

It was difficult in the beginning for me to say “yes”, “no”, or “would you please…” But once I got started, it got easier.

Here are examples of this week so far:

“OK. You know the rules. Mi casa es su casa. Help yourself to anything you want and clean up after yourself.”

“Would you excuse me, please? I am so tired and need to lie down for awhile.”

“Yes, you can help—could you finish cutting up these veggies? And can someone else take out the garbage?”

“It is SO hot. Would you please get me an ice pack from the freezer—there’s a crowd in the kitchen!”

“Would anyone mind going to the store? We need to get…”

“No. As much as I would like to go, I better not. It’s too hot and I’m too tired. When you are gone, it will give me a great opportunity to sneak into bed and take a nap.”

“Yes, you can run the vacuum for me!”

“No, you guys go ahead and watch the movie—I’ll watch it another time. I’m going to hit the sack early.”

It works beautifully. My family is great–willing to pitch in, and understanding my need to take care of myself. They love to help me, and I love their help and appreciate their understanding.

Gone are the days when I felt that I needed to get up first in the morning to make coffee. Gone are the days when they felt uncomfortable as they watched me struggle trying to fix a meal for them. Gone are they days I felt too proud to ask for help. Gone are the days when they felt intimidated to offer help.

So, do yourself and everyone else a favor: Speak up, nicely. It is a win-win situation.

www.DebbieMS.com

Using Perspective and Positive Thinking

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“Overcoming Hardship and Loss”
June 4, 2012

“I had to put my beloved dog down yesterday. I’d rather have him back than the use of my legs.”  That was a tweet I sent out on Friday.

My dog Bear was such a faithful companion for thirteen years.  My son brought him home and gave him to me when he was only five weeks old.  It was love at first sight, and we were inseparable after that initial bond.  He was very sick when I had to make the decision to put him down.  I know I did the right thing, but I feel such sadness and grief right now.

He was my best friend.  He always listened to me, never was mean to me, and stayed by my side no matter what mood I was in.  If I was happy, he was happy. If I was sad, he was sad.  If I left the house without him, he laid by the door until I came home.  Our favorite activity was to take a long walk around the neighborhood every morning and greet the neighbors.

I started to train him to be a therapy dog early, and he was so smart he would put his own toys away.  Bear was so patient and understood my disability. At seventy pounds, he was sturdy and still as I grabbed onto him for balance, or needed help to roll over or stand. I swear if he could push a vacuum cleaner, he would have swept my floors for me.

Dogs are amazing animals.  They are incredibly smart and their senses are keen.  They don’t complain and if treated right, are so devoted; their love is unconditional.  They want to please, and are taught to be useful and obey. They assist police, soldiers, handicapped people, and others in incredible ways.

I am using the power of perspective and positive thinking to help me through my loss:

* Bear was very seriously sick and now he is at peace.  I know in my heart, mind and gut I made the right decision.

*We had thirteen good years together, and gave each other tremendous joy.  I was lucky, but he was lucky too.  He had a lot of love from everyone whether they knew him or not.  He was always fed, walked, brushed, played with and attended to when he was sick or hurt, up until his last breath.

*So many other dogs (or cats, etc.) never have these things.  They are abused, abandoned, or neglected.  Too many loving animals that could have what Bear and I had never get that chance.  In fact, he had a better life than most people on this planet.

*Likewise, even though I have many difficulties with my MS, I also have a better life than most people. My family loves and supports me, I live in a modest but comfortable home, eat well, and have everything that I need except perfect health.  But then again, I tell myself that things could always be a lot worse.  A good friend has a Down’s syndrome daughter; another friend has a severely autistic child.  My brother-in-law lost his 16-yr. child in a bad accident…

*It’s okay to cry or vent out feelings for awhile.  It’s not being weak or emotional; it’s being human.  My husband, son and I are talking about our feelings and memories.

*I am grateful for the sensitivity and kindness others have shown in support of the loss.  What would I do without my family and friends?

Throughout the years I have suffered many hardships and losses–my physical problems from MS; death of a parent, other close relatives and friends; financial and emotional distress from job losses of both my husband and myself—the list is quite long.  I have used my perspective and positive thinking through these difficult situations to help me cope with my grief.  Things happen in life we don’t always understand or think are unfair.  I think experience, age, my MS and attitude have taught me that. It may not work for everyone, but it works for me.

So I will be sad for now but slowly heal in time to the point where my sadness will dissipate and fond memories will replace it.  I will always feel Bear’s loss, but I accept it and will continue to move forward. Life goes on and Bear would want me to go forward with it.

www.DebbieMS.com