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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Depressed…Again

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?

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Photo credit: Farmer’s Almanac

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Godzilla in 2D?

It’s time for Mama Kat’s Writer’s Workshop!

Prompt 2. The last movie you saw in a theater.

I don’t see a lot of movies in the theater, it’s just too expensive and I can wait until they come out on Netflix.

The only movies I do like to see in the theater are the action ones which are really enhanced by the big screen effect. Hearing the audience scream and feeling the vibe in the theater complete the experience.

Except, when I finally coordinate my life to see the movie there are usually six people there if I’m lucky.

Twice I’ve seen 3D movies in 2D. Apparently in a crowded summer movie season, they take the 3D movie off the marquee very quickly and I must see the movies without the 3D effect.

I saw the Amazing Spider-Man 2 in 2D and I really liked it. The story and the action were great. While seeing it in 3D would have made it more exciting and fun, the movie definitely didn’t need it.

A couple of weeks ago I saw Godzilla in 2D. That movie really needed the extra D. Without it, the movie was a totally serious movie about Godzilla attacking our shores. Without the D you had to concentrate on the story, some of which didn’t add up.

SPOILER ALERT, sort of. Who hasn’t seen Godzilla by now?

The hero must defuse a bomb, supposedly so powerful that massive death and destruction would ensue if he failed. To me, it seemed like that part of the story was dropped. What happened to that deadly bomb?

I was confused and upset.

“Excuse me”, I asked a couple leaving the theater. “Can I ask you a question about the movie?”

They said I could.

“What happened to that bomb, the guy was supposed to defuse it but I feel like that plot line was dropped.”

“Oh no, it exploded. Remember when they show the white light with him on the boat and then he is rescued?”

“But I thought that bomb was supposed to destroy everything. How did he live?”

They shrugged and said, “It’s the movies.”

I left angry, with my intelligence insulted.

I really do enjoy the Godzilla series, so when Godzilla 2 or whatever they’re calling it comes out I plan to be getting my 3D on with the rest of America.

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Photo credit from Inner and Outer Demons 2.

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Chronic Mom, Chronic Summer

I realize I haven’t written about Tyler in some time which is a bit crazy since I proudly own up to having a Mommy Blog.

He did very well in first grade and made great improvements in his handwriting and behavior. He is given speech, physical and occupational therapies according to his Individualized Education Program (IEP) He sees a talk therapist every two weeks.

This is Tyler’s third week of summer vacation. Last summer we had him do 8 weeks of day camp which he hated because it was too scheduled and too much like school. This year he will do four weeks of camp. Tyler mostly wants to stay home and watch t.v. and play video games, although I have gotten him to read comic books and brought him to the pool.

But I have been so tired I give in when Tyler doesn’t want to go to the library or doesn’t want to do his strengthening exercises. I am just too exhausted to argue with him.

I am so frustrated with needing to sleep all the time. We are exploring the possibilities about why I am feeling this way, but I do feel I have some sort of sleeping disorder. I don’t take my sleep test until July 17th; how can I give Tyler the summer he deserves and needs when I have to wait so long for a diagnosis and treatment?

How are other chronic moms dealing with summer vacation?

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Throwback Thursday: My First Bloggers’ Night Out!

Inspired by Mama Kat’s Writer’s Workshop.

2.) Throwback Thursday! Find and share an old photo and let it inspire a blog post.

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This picture was taken in November of 2008 and it was from a meet-up of the then New Jersey Moms Blog.

I don’t know if even felt like a blogger yet. I had been laid off earlier that year and diagnosed with Lupus. No longer working in the traditional sense, my mind had some freedom to create and I found myself “writing in my head”. I was chronically ill, I was a mom to a toddler and I had something to say.

Somehow I knew that the New Jersey Moms Blog needed more writers. I got in touch with Jill Asher who was heading up the Silicon Valley Moms Group. She had me send the two pieces I had written and told me I was accepted.

Pictured in the photo from left to right are Shannon Entin, me, a woman I do not know (sorry whomever you are!) and Monica Brand, whom I still keep in touch with.

I was also thrilled to meet Vanessa of Chefdruck and Liz of This Full House.

It was a bit overwhelming. I was probably the only woman there who did not have her own blog, I was only writing for the New Jersey Moms Blog. But I sensed that this night was special and I felt energized to be in the company of these women.

Fast forward to the present and I celebrated five years of Mama Sick in May.

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Health Update…Waiting

Lately my biggest frustration is that I’ve been feeling utterly exhausted. Fatigued yes, but I also find myself needing a nap, sometimes a few times a day. It’s gotten so bad that I bought a scooter because being on my feet tires me out so much. I’ve been using it for department stores and grocery shopping. After renting a scooter for Disney World, I can’t use those clumsy scooters offered by the stores that can only go 2 mph. I had hoped to be using it for more pleasurable outings but right now I am just too tired.

My pulmonologist scheduled me for a sleep study but that isn’t until July 17th. I snore, so he is looking to see if I have sleep apnea. I do wake up a couple of times a night coughing and having trouble breathing, which could be due to asthma. I also wake up in the night with pain or just having to go to the bathroom. Waking up four times a night is enough to make you exhausted, even without having sleep apnea!

Another thing going on is that I’ve been having very heavy and painful periods these last few months. After I had Tyler I didn’t get cramps any more. Now I need high doses of ibuprofen and heating pads. Thinking it could be fibroid tumors, which are rarely malignant, my Primary Care Provider ordered an ultrasound on my uterus. The test came back normal which was annoying to me as I was hoping for something benign and easy like a fibroid tumor diagnosis. I see the gynecologist on July 17th too. She is supposed to be very good so I am willing to wait for her, but the wait is very frustrating and I have to make it through another period until she sees me.

Lastly I have an appointment to see the urologist on Thursday because I have a pattern of blood being in my urine every time I take a urine test. I have been treated for a bladder infection each time. All of the tests done concerning my kidneys have come back negative. I hope to get some answers on this soon.

What are you waiting for?

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