Finally An Answer

I had my sleep studies on September 22nd and September 23rd.

photo copy 32

It took the tech 45 minutes to hook me up to all those bells and whistles and then I simply went to sleep without much difficulty.

The daytime, multiple sleep latency test, was a lot more challenging. They woke me at 6:45 and I had to change into my regular clothes. Every two hours they let me nap for 15 minutes. It was hard to stay awake and one time I fell asleep. It was eerie as they yelled at me through the ceiling to wake up.

I saw my pulmonologist and he told me that I have excessive daytime sleepiness, or narcolepsy! It felt so good after all these months to have a real diagnosis and that it wasn’t just in my head!

The bad news about this scenario is that the number one choice to treat narcolepsy is Nuvigil, with the copay for my insurance being $239.00. I just can’t swing that. I’m going to call my doctor and see if there is anything cheaper that I could go on that works nearly as well.

Another cause for concern is that some of these drugs can affect my mental illness. I am also going to call my psychiatrist to see if she recommends these types of drugs.

My pulmonologist did say I will not feel better right away. I do feel worried that nothing will work for me and I will have to live like this forever. I want to get my life back, want to be in control and want more energy and awake time for Tyler. I slept much of the day away today.

But as I said, there is such a relief to know what is wrong with me. My worst nightmare would have been them saying that my tests were normal!

I will keep you posted as I continue this journey.

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To My Son On HIs Eighth Birthday

If you would like to look back at some other birthdays here is Tyler’s seventh and sixth birthdays.

Dear Tyler,

Happy birthday…not sure what to call you because you really hate it when I call you baby, and you ask for me to please not call myself Mommy. It’s “Mom” not “Mommy.”

This was the first year we did not give you a traditional birthday party. It is so hard to find enough kids to get together around this time of the year. We spent more money on toys to make up for it. You loved your Minecraft toys, your Super Man, Mr. Freeze and Flash figures and the new Captain Underpants book.

It’s nice to know that dad and I are friends enough so that we can go out for your birthday as a foursome, with Jaques included. Your birthday dinner of choice was a tunafish sandwich at Subway and four donuts from Dunkin, although I suspect some will get stale.

You joined Taekwondo in August and really like it. We let soccer go this season.

We now look forward to Halloween where you are going to dress up as the Flash.

We went to Disney World this year and we were all amazed.

I wonder if you will remember your 8th summer as “The Summer of Sleep”?

I go for a Sleep Study test on September 22nd but until then, I seem to be sleeping more and more. No one is sure if it is of a depressive or physical nature. Thank God for Jacques,video games and now for back to school because I have a very hard time staying awake for more than a couple of hours at a time during the day.

I explain to you that this is a temporary situation, but “temporary” is hard to grasp for an 8 year old.

Happy birthday, my…baby. Shoot, it’s my blog and I’ll call you that if I want to.


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With Robin Williams Gone I Feel I Can Tell My Story

(Warning: Triggering for suicidal behaviors and thoughts.)

I’m not sure why but it has taken the suicide of comedian/actor Robin Williams to finally allow me to tell about my suicide attempt.

I skirted the issue when I came back from a long state of depression and suicidal ideation in my September 4, 2012, “Dropping Back Into Life” blog. I didn’t feel my readers were ready to accept that I had tried to kill myself, and I even now I realize this comes with a risk.

Despite currently being in a state of depression, I am not suicidal and hope never to be again. But mental illness is unpredictable. It took me a while to look at my attempt and not be properly horrified by it.

Back in January of 2012 I became dangerously depressed. Being turned down for disability in December, along with non-stop pain and dry mouth from my meds and another diagnosis, this one requiring a procedure, fighting for food stamps, again…I felt like I just couldn’t do it any more. Blog-wise, not realizing that this was part of my depression, I felt uninspired. The ideas had always flowed so freely and now there didn’t seem to be anything to write about.

I was at times depressed to the point of near catatonia. I also felt as though I had Alzheimer’s. I couldn’t remember how to shop for groceries or how to cook.

I became agoraphobic and had much difficulty leaving the house.

I also felt like I could not take care of Tyler, that he deserved a better mother. He was only five, he would forget me, and be better off without me. Any mother would be better than me.

Everyone around me, including my therapist, thought I needed a break. That I was too stressed out from everything going on and would benefit from having a kind of vacation in my home.

My mother-in-law flew in to help me, to be followed by my mother, but I just got worse.

The pain from my illnesses, the agoraphobia, the dry mouth, fighting for food stamps and other benefits, thinking that I had failed Tyler as a mother; I just wanted it all to end.

On January 24, 2012, at about 3 a.m., in my pajamas I took the amount of pills I thought it would take to kill me and got into bed. I felt relieved. When the 7:00 alarm rang for school I was angry that it didn’t work. I told Grant what I had done and he called 9-1-1.

I stayed angry for many months, but realized it was more difficult to kill yourself than I had thought and would not try it again, although I would think about it constantly.

I guess I am coming out now because Robin Williams was always thought by people to be so funny and happy but inside he was struggling with a very dangerous illness. His death shows that we never really know a person and hopefully this will open up honest conversations so that people in need will not feel ashamed to reach out and their friends or family will not be afraid to get involved.

It feels good to come out to my readers and the world and I realize I shouldn’t have kept this a secret for so long.

I feel blessed that I did not complete my suicide attempt and that as hard as life is, that I am still around for it.


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Disney Releases Vacation Package Pricing For 2015!

I am pleased to be working with Destinations in Florida Travel, the top 2009, 2011, and the 2012 Disney Destinations Sales Performer and the 2010 & 2011 Universal Studios Travel Agency Partner of the Year!

Let’s hear from Mama Sick’s own personal travel agent, Veronica Mazarelli:

Hello everyone!

Have you heard? Disney has released their 2015 vacation package pricing!!!

This means you are able to book your vacation now and have a year (or more) to pay it off! Make payments as you see fit. It’s like vacation lay-away!

And to make the deal even sweeter…

For every person who books their vacation for 2015 by August 30, you will receive the following:
(approx 2 weeks before your vacation)
• Official Disney World Autograph Book
• Disney Gift Card
• Personalized Mickey Mouse Phone Call
• All of our Extra Free Services provided to each Disney Guest

There are so many exciting things at the Walt Disney World Resort for 2015. Here are some of my favorites:

My Magic+ – Imagine walking right to the front of the lines at the Disney Theme Parks. Imagine never having to dig in your pocket or wallet for your credit card or Key to the World Card. Imagine your child walking through Fantasmic! as the Disney employees says “Hello Tim. Did you see Mickey Mouse today?” These are some of the magic moments you will experience with the new My Magic+ experience with MagicBands and FastPass+ advanced reservations.

Seven Dwarfs Mine Train – The newest ride at Magic Kingdom is the Seven Dwarfs Mine Train. It opened a few months ago and it is fun for the whole family. Your kids will love zooming past the dwarfs in the mine and then swing back and forth around the new Fantasyland. It is a great ride and brand new, just for you!

Festival of Fantasy Parade – Everyone loves the Disney Frozen movie! You will get to see Anna, Elsa, and Olaf up close on their own parade float at Magic Kingdom Park, along with your other favorite Disney Characters. This new parade is spectacular and a must do for your 2015 Disney World vacation.

How about a drawing to add to the fun? Everyone who requests a quote for a 2015 Disney vacation through Mama Sick will be put into a drawing for a $15 Gift Card. Then on August 15, we’ll pick a name and see who wins the prize… it might be YOU!

Stay on the lookout for more updates on all the Orlando area vacation spots, with our Orlando Digests. 

Click here to get started! And follow me on Facebook and Twitter!!! 

Have a magical day!

Veronica Mazarelli
​Agent with Destinations in Florida Travel
Let her custom design your vacation experience!
Authorized Disney Vacation Planner, 
Universal Orlando Specialist, 
Sandals & Beaches Resorts Specialist 

Seven Dwarfs Mine Train

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Health Update

While some of my health issues are getting answered, other questions still remain.

At the gynecologist’s, it was determined that my birth control, ParaGard, is the cause of my long, heavy, painful periods and that I need to take it out. I’m trying to make sure that insurance will pay to have it removed, although I don’t see much of a problem with it.

The Cystoscopy which examined my bladder looked normal and a another blood test showed no blood in my urine.

I saw the Infectious Disease Specialist and she did not think I had Lyme, but she did not test me for it. I have an email into her as to why she did not actually test me.

My psychiatrist increased one of my meds and lowered another in an effort to decrease my depression. Lowering one of my meds makes me vulnerable to mania but I just can’t stay in the dumps. Bipolar disorder is so frustrating, my balances are very short-lived.

I saw the Pulmonologist last week. The in home sleep-study showed no sleep apnea, but the doctor and I were unsatisfied. The in home sleep-study doesn’t test for REM sleep, narcoleptic disorders, etc. I scheduled a nighttime study for September 22nd and a daytime study for the next day. This is contingent on whether or not my insurance will pay for it. More waiting. September 22nd is so far away.

The Pulmonologist asked me to try one thing: walk for 20 minutes every morning when I wake up. So far I haven’t done it. I know it would be of tremendous help but I can’t even picture doing it. When I wake up I just want to go back to sleep, and do so. I’ll probably buy some active wear this weekend because I feel like a complete idiot for not doing this one thing.

In the meantime, I continue to sleep a lot, due to tiredness or boredom. Nothing interests me because of the depression so there is not much else to do except sleep. I am behind in what I have to do.

My therapist is back from a four week medical leave and I am seeing her tomorrow. I really need it!

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In the middle of all of the tests I have been going through, I find myself in another episode of depression.

All I want to do is watch mindless t.v., if that. I can’t concentrate on anything, I feel like I have absolutely NO interest in doing anything and so I have been sleeping a lot. Like so much I didn’t think it was possible to sleep this much.

I feel so guilty about when I can’t do anything with Tyler and he just plays video games, but the feeling to sleep is so powerful. I am glad that Grant can entertain him when he has him on his days.

I am behind in calls I have to make and bills I have to pay. I can’t seem to face the grown-up things I have to do, I feel frightened.

My psychiatrist has been on medical leave until today and I have a call into her. My therapist is also on medical leave until August 8th. I really like the two of them and do not want to leave the practice. My alternative is to call a county “talk” line but then I’m afraid I’ll wind up in a behavioral health care facility, when all I really need is a medication adjustment.

I am trying to plug along today but it is so dreary out, it is perfect napping weather.

I feel like the biggest loser in the world, and at the same time I am probably gaining weight because I am so inactive.

I am so tired of this depression.


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The Wait is Over

After several weeks of waiting, my doctors’ appointments and tests begin tomorrow.

I see the Infectious Disease Specialist, who hopefully will determine if I have Lyme Disease. This is my third try for a definitive answer.

On Thursday I see my new gynecologist. I have been having heavy, painful periods, plus it has been a long time since I have had an examination.

I also pick up the materials for my sleep study Thursday night. I am excited to get the results of that because I feel that I have indeed been having sleep disturbances and that’s been a good part of what’s making me so exhausted.

I have been having blood in my urine every time my urine is cultured and a few weeks ago I had my urologist appointment. My cat scan of my ureters, urethra and bladder looked good.

On Monday I am going to have a Cystoscopy which will examine my bladder.

I think I am most worried about this procedure. I’ve never had it done before and if the news isn’t good I’m afraid to know about it.

I have a follow-up with my pulmonologist on the 30th to discuss the results of the sleep test.

Lastly, I see my Psychiatrist on the 31st. She’s been on medical leave. All of this medical upheaval has caused my depression to increase.


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My Fantasy Super Mom Power

It’s Mama Kat’s Writer’s Workshop Time Again!

Prompt 4.) If you could have any super mom power, what would it be?

I didn’t have to think too hard on this one, if I could have any super mom power it would be to have the energy my son has so I can keep up with him.

I remember being a kid and feeling boundless energy and my mother saying, “Where do they get their energy from?”

Now here I am.

My situation is a little different from average moms because I suffer from various chronic illnesses, one of which is making me utterly exhausted and the doctors don’t know what it is. I hope to have answers by the end of this month as I have a lot of doctor’s appointments and tests coming up.

It is very difficult to have my seven and a half year old home this summer. I have to take at least one nap every day. I hate that I have to set him up with video games while I sleep.

I have had to explain to him on more than one occasion that I want to go to the pool or the beach or the park with him, that I don’t want to have to sleep every day and that I hate this more than him, but it is very difficult for his to grasp.

He is having some half day camp time throughout the summer, about five weeks, but he is still having more down time than I would like.

I am hopeful that I can have a diagnosis and begin treatment at the end of July and maybe some weeks of summer can be salvaged.

What super mom power do you wish you you had?


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Guest Post: A Mom Dealing With Rheumatoid Arthritis

This is my first of a monthly series of guest posters who will share their diseases and conditions and how they affect their lives. I met Alecia when we participated in a Mama Kat’s Writer’s Workshop when we discovered we had a lot in common. I will let Alecia tell you all about it.

The sun rises to greet a new day. My son, who is 5, comes in to wake me up for the day and is already asking if we can “go somewhere fun”. I rise up out of the bed; make my way downstairs, and then I do an assessment of my health. Does anything hurt? Am I fatigued still? I try to anticipate what might hurt as I go through the day and whether I can answer “yes” or “no” to my son’s request. This is my life as a Mom with Rheumatoid Arthritis.

I never expected the diagnosis of Rheumatoid Arthritis (RA) when I went to the doctor for the first time with pain in my hands, wrists, and knees. At first, I was told it was carpal tunnel. However, the pain would move around to other joints: shoulders, elbows, feet, and hips. My diagnosis came in January of 2013. I had already been experiencing pain on a daily basis and fatigue so the diagnosis just confirmed the reason. I couldn’t imagine at that time, how my job as a Mom would change due to my RA.

Rheumatoid Arthritis is an auto-immune disease where your body attacks your joints. It is different than osteoarthritis, which is due to age and wear and tear on the joints. There is no cure for Rheumatoid Arthritis and the progression of the disease can vary from person to person. Often times, looking at a person who has RA you wouldn’t be able to tell they are sick. Along with severe pain in the joints, which can move around from joint to joint, RA causes fatigue and oftentimes, the side effects of medicines can be harsh as well.

My daughter, who is 7, has said a lot that she “hates RA”. When I ask her why she hates RA, her response is always because it has kept me from taking them places and having fun with them. It is very hard to not be able to chaperone a particular field trip because of the amount of walking involved. To not be able to participate in Field Day like other parents because you are having a flare and need to rest. All of these things are hard for my children to understand. The words “no fair” and “I miss the old you”, tend to be said frequently to me by my children.

It has changed how I am as a Mother in that I have to limit what I do and what I can participate in. I may have to bail last minute on plans because I can’t keep my eyes open due to fatigue. It breaks my heart to not be able to do and go like I could before and to feel like I’m letting my children down. I should be holding my son’s hand when we walk through a parking lot to keep him safe. Instead, he holds my hand and arm so that he can “help” me get through the parking lot to the store when I’m having a rough day.

On a positive though, on the days when I am able, I do as much as I can to make memories and have fun with my children without overdoing it. I don’t want their entire childhood to be focused on their Mom’s RA. As they get older, I’m hoping they will understand a bit more but it is hard at this age to see your Mom hurting and battling this disease.

Life often puts us on detours that we didn’t expect; I’m learning how to enjoy the scenery on the latest detour in my life. I am Alecia and I’m a Mom to two children, 7 and 5, who loves to cook, create, learn, and see the beauty in life. I share my thoughts as well as my favorite recipes and crafts at Detours in Life – Enjoying the Scenery Along the Way.


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“So What Are You Doing For the Fourth?”

“What are your plans for the fourth?”, is the question on everybody’s lips this week.

For people with chronic illness, holiday plans can be a challenge. Do you participate in the holiday, the barbecues and the fireworks, and then spend the next two days recovering? Do you choose one part of the celebration of the fourth, or do you just skip it all together?

Tyler, Grant, Jacques and I plan on going to a park to barbecue and then watch the fireworks. My concern, more so, my fear is whether I will be able to get a nap that day and how I will feel over the next day or two.

Whenever I participate in something like this, I have to ask myself, is it worth it?

If you are hosting a party and have a chronically ill family member or friend in your life, don’t forget to include them, even if they always say no. They still want to be asked. Even if they can come for an hour, tell them you would love to see them. Being chronically ill is horribly isolating. Don’t push them, though, respect their decision, if they tell you they cannot come.

How are you handling the holiday? How will it affect you?


Photo credit: Farmer’s Almanac

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