chronic illness Archive

20

Cry Baby

crying

The soul would have no rainbow had the eyes no tears. ~John Vance Cheney

The last couple of days have been painstakingly rough. Even though I had my depression medicine changed, I still find myself crying all the time. Which is embarrassing. I hate crying in front of my husband.

The funny thing is, nothing has really changed. I haven’t lost any new functionality. But still the crying remains.

One time between sobs, I tried desperately to explain to my husband what was wrong but I had no answers. It’s not only frustrating for me but for him too. This worries me because I believe there’s only so much of this he is going to take. (Probably not true but that’s how I think sometimes.)

Shortly after I tried to explain how I felt, I excused myself to the ladies room. Minutes later, I reemerged with the answer.

My cycle was on!

I was so excited because I realized I wasn’t crazy, just emotional due to hormones. Sometimes I forget that I am an ovulating 39-year-old woman. And yes, it is typical for me to have such a sporadic emotional ride. The doctor has even offered to give me medication for it. Maybe I should take her up on the offer.

Problem solved, until a week later and I had yet another crying spell.

Oh no!

I guess crying comes with the (MS) territory.

23

Jokes On Me

pointing

Find a place inside where there’s joy, and the joy will burn out the pain.

Do you ever feel as if you are the last one to get the joke?

Then you figure out the reason why you don’t get it.

It’s because; you ARE the joke.

I have finally realized that the MS joke is on me. Sometimes I wish I could just take a ship to mars where I can start a new life and escape my loneliness. I have felt so weak, for so long that I can’t remember when I didn’t feel exhausted all the time. Everyday I’m just trying to keep my head above water. But my MS is so heavy that I’m nearly drowning from the weight of carrying it on my shoulders.

At times I feel like I’m losing all control of my life. Like my lesions and my body have conspired against me to destroy my happiness. While my psyche is in the background laughing and screaming, “Encore! Attack her again!”

It’s like the MS is being entertained by my plight and enjoying every minute of it.

They say it’s better to feel pain than to feel nothing at all. Whoever said that must not have had MS because some days the emotional pain I feel is so bad that I would never wish that feeling on my worst enemy.

Believe it or not, I’m not bitter. I’m just frustrated. I have no problem carrying my personal burdens like everyone else; I’m just tired of being the punch line to this horrific joke.

5

Shared Plights

dental cleaning
“People will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
- Maya Angelou

I had my usual visit with my hygienist last week. Well, actually I haven’t been to see her in six months. So, I really didn’t remember who she was. When she entered the room we had to reintroduce ourselves to each other. I should say, she remembered me, but my MS mind didn’t remember her.

She asked me how my husband was doing, actually calling him by name. Then she asked how my MS was treating me. I told her everything was fine.

I, in return, inquired about her life. She looked at me and said, “I’ll tell you this because you can probably relate.” Then she continued to share with me her very personal recent medical encounter with ovarian cancer and subsequent chemotherapy. I was only expecting a small talk reply so you can just imagine how taken aback I was.

Immediately I realized how tenuous it was for her to even be at work. According to her story, it seemed like she had pain, got diagnosed, surgery, chemotherapy and then was right back to work all within a few weeks time. Of course, it wasn’t actually that streamlined, but it sure sounded like it.

I couldn’t help but feel a shared since of underline hope with her as she told me her story. We talked more as she cleaned my teeth and then we parted ways.

Although our plights can be significantly different, it seems at the end of the day we all just want to be heard. I think it helps us to free our innermost concerns and worries with those that can understand the best. And that’s usually someone who is in a similar situation.

45

Swallow Test

IMG_0730

I have been having trouble swallowing liquids for about a year. It was never anything serious. I would sometimes cough after swallowing drinks.

But then, I began coughing vigorously. I was choking on everything I swallowed. Then one day while taking one of my many pills, I choked on a capsule. This time I couldn’t clear my throat. I couldn’t speak. My husband was in another room so I began banging on the dresser with my hand. Luckily he heard me and was able to help clear my throat of the pill.

This really scared me. I thought I was going to die. I called my neurologist and told him about it. He explained that lesions might have damaged my nerves as well as the area of the brain responsible for coordinating swallowing. He suggested I see a speech therapist.

Days later, after hearing my story, the speech therapist seemed very concerned. She explain, when swallowing difficulties are present, food or liquids that you eat may be inhaled into the windpipe instead of going down the esophagus and into the stomach. And once in the lungs, the inhaled food or liquids can cause pneumonia. She thought this might have been happening to me, so she set up a swallow exam.

IMG_0727

The swallow test involves a radiologist watching an X-rayed esophagus so they can document any noticeable swallowing difficulties.

They fed me food and drinks and X-rayed my throat as I swallowed. It wasn’t some great meal either. The food and drink had a substance called barium in it. The barium coats the esophagus enabling the hollow structure to be seen on the X-ray.

Oh, by the way, the barium tasted terrible.

Next, they captured a series of X-rays to visualize the pathway the barium took to get to my stomach.

IMG_0726

Start to finish; the test was about an hour long.

After seeing the results, my doctor and speech therapist confirmed I was having problems swallowing thin liquids. Because of this, I have an increased risk of catching pneumonia. The suggested plan of action is to thicken my liquids to a nectar consistency. Also, substitute thin liquids with thicker liquid choices such as cream soups for plain broths. And when taking medication, crush pills and mix them with applesauce or pudding.

I bought the suggested thickening agents and I’m supposed to use it with all liquids.

Has anyone else experienced swallowing problems?

IMG_1962

50

Pride Wins Again

restroom

After my husband paid the bill, the receptionist slowly ushered him to the side and whispered, “It’s getting hard for us to pick her up. We need you to stay if she comes back.”

If?

I have talked about going to the hair salon a couple of times. I consider it one of my few real treats. The problem is, lately the hairdressers have to help me out a whole lot. I need help getting in and out of the chairs for washing. And drying my hair is the worst part. I am already weak and once I get under the hair dryer it zaps all of my remaining energy right out of me.

But nothing compared to what happened during my last visit. I asked the hairdresser to stop so I could use the restroom. I probably needed someone to close the door, help me pull my clothes down and physically get me to the toilet.

But I didn’t say anything. Nothing.

I just rolled to the restroom alone. Was it my pride or did I really think I could do it myself? I’m not sure. But as the urgency to micturate increased, I began to panic. Once I entered the restroom, I realized I should have asked for help. Then before I could make it to the toilet, I fell on the floor and urine spilled from me. It was all over the restroom floor then migrated into the hairdresser area.

I was so embarrassed!

Two women from the salon had to come into the restroom and help me.

After that incident, I really understand their reservations about having me as a customer. I can be a handful. And I must give it to them; they went above and beyond. Often, it’s like they were nurses to me. For this reason, when they voiced their concerns, I could not complain. So when they asked my husband to remain in the salon for the next time I come, I was just ecstatic that I could even return.

I guess MS won this round but I’m not giving up. I just hope my husband starts staying in the salon while I get my hair done. This is huge because I know he doesn’t want to stay there for hours at a time. I’m there for 2 to 4 hours, depending on what I’m getting done. Hell, I don’t want to stay that long either!

Salon Hair

52

Consumed By Deficiencies

ID-10078519

“If you change the way you look at things, the things you look at change.” – Wayne Dyer

I have a standing appointment with my psychiatrist every other Friday. The sessions last for 50 minutes. Just long enough for me to get my point across and work through life’s dilemmas.

I have been seeing her for a while now, so she has a pretty good direct grasp of who I am and what I’ve been through. So you can imagine how baffled I was when she said, “Nicole, you are obsessed with your deficits.”

She thinks I identify too much with multiple sclerosis. But let me tell you, I can’t imagine not identifying with it. It has changed the course of my life. I’m just trying to follow its lead.

I see her for adaption problems. She is teaching me coping skills to facilitate my abilities at dealing with what I can no longer do. Like not being able to walk or drive.

She’s not a big fan of my blogging either. Because I’m constantly highlighting my problems, she believes the blogging is keeping my deficits in the forefront. That got me thinking; maybe this blog does cause me to focus even more on what I cannot do. I hope not, because I really love blogging.

My conundrum is that I disagree with her about my blogging but I still enjoy our sessions. She really does help me through the tough times. She pushes me to believe that I’m more than just Nicole with MS. I’m Nicole whom is an avid reader. I am a regular at my local library. They know me by name. What can I say? I’m a nerd at heart.

I also study Spanish, horseback ride and go to the gym twice a week. She made me realize that all of these things are important and they are bigger than my MS. Because of that, I will continue to see her, even though she is not too crazy about this blog.

23

Parade Days

mdw0031-228

Last week I was in the hospital for two days after having an adverse reaction to my latest prescription. The symptoms were so bad that the doctors first thought I had a stroke. It wasn’t until all of my test came back negative that we linked my sudden change in health to the new medication.

Before this happened, I was excited because it is Carnival time. I have been going to Mardi Gras parades in New Orleans, Louisiana for over 30 years. But this year just wasn’t the same. I can’t put my finger on it but I didn’t have as much fun as usual. My guess is, since I really hate being in a wheelchair, being at a parade in a wheelchair just wasn’t enjoyable. I don’t like when people stand in front of me blocking my view. It’s funny because everyone is nice until the floats start throwing trinkets. Then it’s every man for himself. Also, bladder issues can cause a real headache especially since the portable restrooms provided by the city are not wheelchair accessible.

But my best guess at the source of my newfound melancholy feelings toward attending parades is the fact that I have been extremely tired lately. I am so weak these days that it’s hard to enjoy myself at events, especially ones that take so much energy. Parade days are all-day affairs that can last 5 hours or more. And there are usually multiple parades. The recent one I attended was actually three different parades. This is something I did all the time, but nowadays it’s just too much for me. And being only one day removed from the hospital didn’t help either.

After I made it home from the parades, I decided I would not attend anymore because they are just too taxing on me.

Moments later, following my declaration, I saw a picture posted by Steve Gleason* at a Mardi Gras parade. He helped me put my overreaction into perspective. So now I have decided that I won’t totally stop attending Mardi Gras parades. I’ll just adjust how long and how many I attend.

Happy Mardi Gras Everyone!

*(Steve Gleason is a former New Orleans Saints football player who is now battling ALS – Lou Gehrig’s disease)

Gleason

Hospital

1780634_642577382466668_1474284473_n

549097_642578712466535_1507202617_n

1975033_642578075799932_129121678_n