Follow-ups at the PCP and Pulmonologist

I had been out of the hospital for two weeks when I went to see my pulmonologist. I was still on the oxygen. A technician took me off the oxygen at my appointment and we waited for a few minutes to see how I would do and I was taking in air normally. Then we went for a walk without the oxygen and I did well with that too. The pulmonologist came in and he told me I was doing well but he still wanted me on the oxygen at night since most people don’t get as much oxygen at night anyway.

He wanted to see me again in six weeks when I would be given a 45 minute breathing evaluation and he would tell me the results right afterwards. I have a daily inhaler that I use along with a rescue inhaler. I wonder if those things are forever or if I won’t need them anymore. Meanwhile I am still self-paying for my oxygen. Every attempt to appeal that has been turned down.

While I was in the hospital my blood sugar was crazy high. That can happen when you’re sick or are being given steroids but as I got off the steroids and was getting better my blood sugar was still high. They were testing my blood sugar every day and giving me insulin. On the last day of my hospital stay they tested my A1C and it was over 7. When the number is over a 6.5 the diagnosis is diabetes.

I had diabetes when I was pregnant with Tyler which puts you at a higher risk for diabetes later in life, plus diabetes runs on both sides of my family. I was diagnosed with diabetes a few years ago and had to test my blood sugar and go on medication (pills) and then for a while they told me I did not have diabetes any more. But weight gain will get you back up into that range.

My PCP prescribed a meter, test strips, medication, etc. and I have an upcoming appointment with a Diabetes Educator. I haven’t been too good watching my sweets (Easter was a killer!) thinking that when I start testing it will be easier to keep from cheating. I feel really down about it. The fact that I can never have candy or ice cream again is depressing. I am already restricted enough on the gluten-free diet. The only thing I do look forward to is that with no sweets, eating the right foods and portion control I will lose weight and that will make me feel better about myself. I read about all the complications you can have from diabetes (heart problems, stroke, amputation, blindness, etc.) and I know I will stick to my diet. Now there is no more Easter candy in my house so it should definitely be better.

So appointments to the pulmonologist and Diabetes Educator are coming up. I’ll keep you posted. Thanks for reading!

Way too much temptation!

 

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A Hospital Stay

It’s been a long while since  I was hospitalized for something other than my mental health.

In late February Tyler was just getting over an earache when I started to have earaches and a sore throat. After putting it off for a few days I decided to go to urgent care. The day I went I found I was having trouble breathing and suddenly my breathing turned into what sounded like a rattle. “I think we waited too long”, I said to Jacques on the way there.

When it was my turn I explained to the nurse technician that while I originally was coming for earaches and a sore throat I was having trouble breathing. I mentioned the rattling sound and she said, “I can hear it”. She put my finger in the pulse oxygen measuring things (not sure what to call it!) and suddenly everyone was in my exam room. Someone said, “Do you want us to call an ambulance for you?” and I said yes.

The ambulance was there in no time. Jacques would follow in the car. They tried to listen to my heart but couldn’t hear it over my noisy breathing. They parked me in a room in the E.R. and put an oxygen mask over my face.

 

We called Grant to let him know where we were. He contacted Tyler’s pediatrician who said Tyler needed to get tested immediately for the flu and so did Jacques. Thank God they were both fine.

We waited in the E.R. for a long time. After a few tests they told me I had pneumonia too. I asked if I was going to be admitted and they told me I was but that they were looking for a bed for me.

Although I was grateful for the oxygen it dried me up something terribly. I begged for water but finally got some ice chips.

Finally the E.R. nurse said, “We have a bed for you. We’re going to put you in intensive care”. I.C.U?! “That’s concerning to me”, I said. The nurse said they just wanted to closely watch me through the night.

The next day they moved me to a normal floor. Everybody wanted to listen to my chest and lungs but it hurt so much to breathe deeply, I couldn’t actually manage it. I had to take short breaths. I mostly used a bed pan, too weak to get up. Even changing sides in bed would exhaust and hurt me.

On my second or third day there my heart started to beat fast and I was losing oxygen. Everybody was in my room and got me stabilized. The doctor said I should be moved to a unit that had a smaller nurse to patient ratio, it was a step below I.C.U.

The whole time I was there everyone used a mask around me, it was such an odd feeling! I asked one of the pulmonologists when I could go home and he said, “You have a very serious pneumonia, it’s not going to take days to go away, it’s going to take weeks!”

Jacques came to visit me every night. Sometimes our visit consisted of us falling asleep we were both so knocked out.

They treated me with Tamiflu and a strong antibiotic.

One day the physical therapist came and showed me how to walk with a walker and got me in a chair. That was my routine, eating breakfast, getting washed up and getting to the chair. I also graduated to using a bedside commode. I took lots of naps. It was hard to sleep at night and my daytime activities exhausted me.

The cable t.v. was terrible. Good thing I’m a reader, I read three good books while I was there!

Eventually I finished the courses of Tamiflu and antibiotics. My lungs were sounding better and the doctor said I could go home the next day! I was still on oxygen but was down to a two. I had to go for a test to see if I needed oxygen for home. They deemed me as a two at rest and then I had to take a six minute walk with the walker. I got so weak I was really glad I had that walker! They also put me down for a two for exertion.

I found out that Medicare only pays for oxygen at home if you have a chronic condition, not if you have an acute condition. Acute or chronic, I still couldn’t breathe, right? I was forced to do self-pay. I spent a lot of money on medicines this month, it’s going to be a tough one.

Now I’ve been home a week and a half. I have wanted to write a post long before this but I am extra tired and take two naps a day. I’ve only been out once but tomorrow I see my PCP for a follow-up and next week I see the Pulmonologist who I hope will tell me I can come off the oxygen.

If you learn anything from this tale it is: GET YOUR FLU SHOT!!! I get a shot every year but with my depression and agoraphobia it made getting out difficult. But I learned my lesson!

 

 

 

 

 

 

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Book Reviews!

Inspired by Mama Kat’s Writer’s Workshop.

Prompt #3. Book Reviews!

It’s been ten years since Abby Williams escaped her small town roots. Now, as an environmental lawyer she comes back to Barrens, IN to investigate a complaint about the town’s plastics factory.As she investigates, Abby finds connections to the mysterious disappearance of popular Kaycee Mitchell more than ten years ago and troubling memories begin to surface. This is a great debut novel, a real page turner by Krysten Ritter, starring actress in Netflix’s original series Jessica Jones and in an important role on AMC’s Breaking Bad.

My boyfriend has gotten me into some television westerns and I decided I wanted to try a book. He took out Louis L’Amour’s Hondo from the library for me and it was just the kind of western I wanted to read. Hondo Lane rides dispatch  for General Cook in the Arizona desert, on his way to delivering news of an imminent Apache raid when he comes upon a lone ranch with just a woman and her little boy living there. Hondo tries to make her leave her ranch but she refuses to give up her home. Finally Hondo gives up, but he can’t get Angie out of his mind. This book is a great introduction to the western genre and L’Amour is one of it’s most prolific writers.

So there you have it! Two very different books I can heartily recommend! Enjoy!

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Falling For Him


Inspired by Mama Kat’s Writer’s Workshop.

Prompt 6. Write about a time you fell down.

When I saw this prompt only one famous fall came to mind.

My boyfriend and I were at a bar so there must have been some amount of drinking being done. We had a fight, I don’t even know what it was about any more, but I got so mad at him I threw my drink into his face and turned to leave, thinking how cool I was.

Unfortunately, I slipped on the drink and landed smack on my butt!

Everybody was watching and all was quiet.

My boyfriend picked me up and I just slinked out of the bar by myself.

Really smooth exit, right?

 

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An Intimate Evening

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

Recently I had the opportunity to try Legatto, an Intimate Massage Oil for Her from the company Resonant Botanicals.

The company’s creator, Michael Yocco, combined his love for music and herbs to form Resonant Botanicals, with a focus on natural herbal healing. Yocco’s great grandmother and grandmother were herbalists and concentrated their efforts on healing and calming remedies. Yocco and Resonant Botanicals believe that there is great value in relieving pain and anxiety without prescription medicines.

The company feels there’s a number of things that set them apart from other natural herbal lotions. Their organic herbal blends combined with therapeutic levels of MSM and Magnesium Oil bring an added dimension of relief. A great deal of research, careful thought and testing has gone into designing the entire line of Resonant Botanicals products. Their products are scientifically designed to bring immediate relief and long term cumulative improvement. Other products include Invigorate and Qi of Calm.

Legatto for Women combines organic oils and infused herbs that combine to warm your heart and allow you to receive and give all the joys of intimacy with your partner. The organic oils include Grape Seed, which has twice as much Vitamin E as olive oil and is an antioxidant, Hemp oil, which regenerates, energizes and moisturizes the skin, Jojoba oil, which is full of nutrients and antioxidants  and Argan oil, which is used as a skin moisturizer to hydrate and soften skin. Indeed, Legatto is a great oil to use on your hands and feet, or anywhere else your skin gets dry, especially in the winter!

 

Another thing I really like about Resonant Botanicals is it’s “Pay it Forward” program, to share products with less fortunate people for natural pain and anxiety relief. Customers and friends may contribute to the program through a donation which will be applied to the cost of an Invigorate or Qi of Calm two ounce lotion. If you are in need, send your mailing address along with your product preference. Once the Program is funded, they will ship it to you at no cost.

After learning about the company it was finally my turn to test it out! I sprayed the oil on my hands and noticed that the scent was just right for me. I always like a little bit of scent and I don’t want anything to overpower me. My boyfriend used Legatto to give me a full body massage. The oil absorbed into my skin and wasn’t greasy. I suffer from anxiety and I did experience a calming effect. The massage was good for both of us and we went on to a more intimate night!

Between the company’s philosophy, the oils and herbs in Legatto and the effect it had on my boyfriend and I, I can absolutely recommend it!

 

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My Favorite Reads of the Year

I read about 150 books this year, which is easy to do if you love reading and are disabled! What follows are a few of my favorite reads of the year, and are not necessarily published in 2017:

Susanna Owens tries to protect her three children from whom they really are, witches. They are related to Maria Owens of the 1600s who was accused of witchery for loving the wrong man. Set in the 60s, the children cannot hide their truths and prevent themselves from falling in love as much as anyone can. This book was beautifully written, magical and very emotional. It is a prequel to Hoffman’s “Practical Magic” which I read years ago but will have to read again.

My favorite non-fiction book of the year was Waking Up White. Debby Irving grew up in a WASP background where everyone else was the same. She never thought of herself as having a race. This book is about Debby realizing the fact of white privilege and takes us on her journey of reaching out to people of color and learning more about what these minorities go through. At the end of each chapter she gives you thought provoking questions to help you think critically of this problem here in America. She also tells you what can do to bridge the gap between all races so that we can all truly belong.

I found a new favorite cozy mystery series this year, “A Witch City Mystery”. If you don’t know, cozy mysteries are less violent than regular mysteries and usually have a great heroine and supporting cast. I picked up one in the series for Halloween and I was hooked. In this first book of the series, Widow Lee Barrett is back in her hometown of Salem, MA to live with her Aunt Ibby and interview for the reporter’s job on WICH-TV. But after the nighttime host of horror movies and psychic is found murdered, Lee is cast as the new host. Lee must also face facts that she is psychic herself! This is the first book in the “Witch City Mystery” cozy series and I absolutely love it. Lee and Aunt Ibby make a great team and the book had a fantastic ending.

And my favorite book I read this year is:

Single mother Rachel Jenner is walking in the woods with her eight year old son, Ben, when he asks if he can run ahead to the rope swing. When she gets there Ben is gone without a trace. It’s every mother’s nightmare, especially if you’re like me and have a son. This is the first book I’ve ever read that I truly felt like I was having a heart attack! I had to keep reminding myself that it was only a story but it is so well written. I can’t do it justice, just read it, read it, read it!

I hope you enjoyed my picks for the year and will pick up a couple for yourself. I’m looking forward to what I’ll discover in the new year!

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More Trouble for Tyler

Thankfully Tyler is on winter break and if anyone deserves the time off it’s him.

There have been more incidents of bullying and a couple of times of Tyler expressing the wish to kill himself. One that sticks in mind is him telling me, “If everybody hates me, maybe I shouldn’t be here.” I said,”You mean live in Willoughby or change schools?” and Tyler said, “No I mean alive.”

His self esteem is in the gutter and when Grant and I tell him he is not those things he says we’re just saying that because we’re his parents.

In addition to the bullying, Tyler has been acting out at school, even going so far as to be suspended for two days. It was getting to be that it was almost daily that I would receive a call or a note home about his behavior. He has always had a little trouble being on task with his schoolwork but now the school was saying he was kicking things, not wanting to stay in his seat and being disrespectful to children and teachers. Two weeks ago I got a call from the principal saying I had to pick Tyler up because he was threatening to kill himself.

Tyler’s nurse practitioner for his psychiatric needs had suggested we put him on a drug for impulse control but we didn’t like the side effects and decided against it. Now with Tyler being so disruptive in school we feel he needs to be on it. We’re going to try it over the break, that’s a good time to get him started on it.

My depression has worsened too. I hurt so much for my son. Sometimes I take a couple of allergy medication tablets and I make myself sleep. I know it’s wrong but I need some peace. And it is exhausting trying not to show Tyler how hard this is effecting me. Emergencies with him have forced me to cancel two therapy appointments but I have one on Friday.

One of the worse things is that Grant got an email from his friend whose son is also friends with Tyler. The friend said that he was discontinuing his friendship with Grant because he believed him to be mentally unstable and that he did not believe that Tyler was being bullied. In addition he was going to call the school and discourage the friendship between the two boys. He said that Tyler was interfering with his son’s ability to make friends and preventing him from normal development. This kills me because Tyler and this boy are best friends and Tyler has only a few friends.

I’m trying to do the best I can for my son and can only hope that this break will be a fresh start for him in the new year.

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So Someone Beat Up My Kid

Yesterday I got a call from school telling me to pick Tyler up because he was beaten up on the playground.

We’ve had a rough month with him. The first event was that some girls beat him up after he got off the school bus. At school about two weeks ago some girls were teasing him. They were saying things like “Your parents don’t love you” and “Nobody loves you”.  He went to the school counselor and told her about the incident. He was crying and said he wanted to kill himself. The counselor asked if he had a plan to do that and he told her yes, that he would either get a gun or a knife or hang himself. That day he had planned session with his therapist and he was determined not to be at risk to himself.

I was devastated that Tyler was in that much pain. It wasn’t that he believed what the girls were saying, it was just the merciless way they were saying it.

The therapist suggested that Tyler start group therapy. It’s basically for kids who have trouble getting along with others. The kids go into group with a goal such as “I’d like to make more friends” and work on that every two weeks scoring themselves as to how well they have done. We are going to score him too. When a child reaches a nine or ten he is considered successful in meeting his goal.

The new therapist told us that Tyler was very immature for his age, that he was at about an eight year old level and that other kids his age were more sophisticated. It really hurt to hear that, in fact I felt shocked. To me Tyler was just Tyler and that was just part of what made him wonderful.

Anyway, Tyler, his dad and I think this is going to be a really good thing for him. The doctor doesn’t accept Tyler’s insurance so I hope for this will help him. I really couldn’t find a doctor in Tyler’s network and this doctor has a really good reputation.

This week is a short week due to Thanksgiving break and we have had trouble every day. It would only be half of the story if I told you that Tyler was always the victim. He does on occasion show disrespect to his classmates and teachers. It just seems that their responses are so much worse.

Yesterday was just a plain and simple case of bullying. Tyler and his two friends were at recess and the aide asked them to collect the balls from the other kids because recess was ending. A boy would not give Tyler one of the balls and was playing keep away from him. He then punched Tyler in the stomach and knocked him to the ground where he and some other kids kicked Tyler. He also took his face and shoved it on the concrete. He was also saying things like “S*ck my d*ick” and calling him a “p*ssy”. The aide saw what was happening and she ran to pull the bully off of Tyler but the boy broke free from her and continued hitting him. Finally the aide picked up Tyler and starting running inside with him although the boy continued to run after them.

Amazingly, Tyler had some sore spots but was basically okay. The ringleader who started the fight was suspended. At first Tyler didn’t want to go to school today but he agreed to go and I was proud of him.

I know this is the best the school can do but I would like to shake this kid who would hurt my baby like that. What kind of animal is he? Next year Tyler will be in middle school where he will be facing eighth graders and what kind of damage could happen to him then?

I’ve been very down about this incident. I feel so powerless because I can’t be there to protect him and I know no parent can. Yesterday I kind of hid under the covers and didn’t help with the cooking. Jacques allowed me to be depressed and I needed it too, I needed to be sad for my boy. Today I felt sick to my stomach and laid in bed and Jacques took care of me.

Has your kid ever been bullied, or has been the one who is bullying? What did you do about it? Did you feel satisfied with the school’s actions?

Tyler in his first play.

 

 

 

 

 

 

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Gluten-Free: One Year Anniversary

When I found out from my doctor that I had Celiac disease I shocked him by being really happy!  I had been sick for well over a year, too nauseated to function on most days. After test after test, including a visit to an oncologist and a surgeon, to find out that what I had finally had actually made me gleeful! My shocked doctor was surprised that I knew what Celiac disease was. I had suspected Celiac for a while but I only had one symptom so I figured it couldn’t’t be me. My doctor said that some people have no symptoms. Some people do have symptoms and it could take years to diagnosis.

My doctor asked, “Do you understand that you will have to live a GF lifestyle for the rest of your life?” and I was still thrilled! To know I could get better just by eliminating wheat, barley and rye from my diet and not be so sick was a pretty good deal to me.

So, on my birthday last year I had my last gluten-free meal: pizza at my favorite restaurant and garlic bread, and started the diet the next day. I read a few books, including cook books and got a lot of help and support from the internet.

I’m not going to pretend that it’s been all sunshine and roses though. There are things I do miss like going to a Chinese restaurant  and the ease of grabbing something quick like in a fast food place. I miss cakes at birthday parties and mostly the fun of grabbing a sweet with my coffee at a coffee shop.

But I have found some pretty decent substitutes. I found a pasta that tastes pretty good and I finally found a place that makes decent GF pizza! Basically there is a gluten-free substitute out there for everything.

Restaurants are really catering towards people with Celiac or those with a gluten allergy too. A lot of places label certain entrees “Gluten-free” and there are a lot of good options. I even had GF pasta at an Italian restaurant! Delish!

Supermarkets are making more shelf space for GF items too, including snacks and I even found frozen pizza!

One disappointment in all this is that I thought I would be losing tons of weight due to laying off sugary wheat  products or things like bagels. But many ice creams are GF so I just have that or I will have too much of a GF meal. It’s a myth that all celiacs are thin.

I want to thank my boyfriend for jumping on the gluten-free lifestyle with me and for cooking special meals for me. But there’s actually a lot of dishes that are just naturally GF too.

So, finding out you have to live gluten-free is not the end of the world. It’s just a new lifestyle that after a few months becomes a part of your life and leaves you feeling much better!

Photo Credit: PCOS DIVA

 

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It Only Takes One

October 10th was World Mental Health Day and no surprise, I was too depressed to write anything inspiring about it.

But the next day I received an email from someone who reminded me that one conversation, one honest way of speaking about mental illness and one connection can make a big difference.

“Hi Emily –

I’m sure you probably don’t remember me, but we met in the Freehold Apple Store about 6 years ago. Your computer was broken and I helped you get it repaired. In fact, you wrote me into one of your blogs:
http://www.mamasick.com/2011/05/my-2nd-blogiversary-the-mission-continues/
 
It’s been quite a long time since that day and I think about it from time to time. I keep your page and the blog post bookmarked for easy retrieval. It makes me smile every time I read it and recall that day as I’ve yet to encounter a situation like it.
I’ve thought about emailing you for a long time to say hello and let you know that I do still remember you and that day at the Genius Bar. Although our interaction was short, you most definitely left an impression. It’s not everyday that we run into people such as ourselves, who are as open to sharing about our respective illnesses.
My struggles with mental illness have peaked and valleyed since we first met and I’m happy to say as of this moment things have been going very well for me. I’ve recently started a new job a couple of months ago, moved into a new place and I’ve even met a girl I’ve taken a liking to. Although I know the depression can and will come back at anytime, I have learned to prepare myself for those times.
Anyway, I hope everything is well with you and your family. I don’t read your blog as much as I would care to admit, but I’ve went and liked your Facebook page and made myself a promise to check it more often. Please feel free to contact me as I’d love to hear how you’re doing.
All the best.
Your friend from the Genius Bar,
Aaron”
I wrote back to Aaron. I told him I remembered him because he made me feel like I had done a good thing, even if it was only speaking to one person. I filled him in on the years since we had met; my suicide attempt and my four in-patient hospitalizations, but that all things considered I was doing much better.
He wrote again to get into a little more details of his ups and downs. But that’s just the way Bipolar Disorder is and it is something we will both have to fight for the rest of our lives.
I think the lesson that we are meant to take from this is to not be afraid to talk to one another about mental illness. And I do think more people ARE speaking out about it and it IS becoming less stigmatized.
Hearing from Aaron really made my day, that just one small conversation could have such an impact on just one person.

 

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