Medical Issues

May Report On Me

I went back all the way to January 1, and could not find a post where I have talked about myself much this whole year. So, because May is my birthday month, I think I will take a little time to tell you what’s been going on with me in 2014.

In January, I went to the doctor for a checkup. Everything was fine, well at least as fine as it can get for me, except that my pain meds didn’t seem to be working as well as they had been when I first started taking them. My doctor decided to change my pain meds from hydrocodone to Percocet. She prescribed them for me to take one 10mg/375 tablet 4 times a day.

I took them as prescribed for exactly one day. The next day, I had to go to an appointment at another doctor, and while I was driving on the way home, I felt like I was floating away into the clouds. I have never been on a medication that made me afraid to drive before, and it really scared me. When I got home, I called the doctor and we discussed either cutting down the dosage or changing something so that I could be pain free while not being so high.

We decided that I would take 1/2 of a tablet 6 times a day, or every 4 hours. This is working out fine for me as far as keeping me pain free.

While I was at the first doctor appointment she also said to me “Karen, you are just too fat.” Now, I have had doctors tell me I needed to lose weight, they have said “You need to lose a few pounds” or “you need to try to lose weight”, but never has a doctor said it just like that to me. So, that day, I assessed my eating habits, and decided that maybe I did not need to eat a bowl of ice cream AND a bowl of cereal each night after dinner. I switched to eating a whole grapefruit every night, and I am proud to say that I have lost 31 pounds since January. Oh, and I also have been drinking a ton of water, at least 10 glasses a day, too.

In February, my psychiatrist (yes, I have one, but I mostly call her my shrink doctor or my crazy doctor), changed the dosage of my Cymbalta from 30 mg a day to 60 mg a day. When this is combined with my pain meds, it makes me sleep. A lot. I spend a good part of every day sleeping in my recliner. That is why some days you do not see a new post from me. This change has helped me a lot. I had been crying some days just for nothing, and having little private pity parties for myself, but since I am taking more of the anti-depressant I don’t have those things happen any more. I also have not had the thoughts about taking the whole bottle of pain medication at one time just so I could be pain free for day. (Which I was thinking about quite often before). So, just for the record, I do feel better in my head than I did before.

March went by quite quickly for me. There was really nothing going on, except that I decided to start a raised bed garden. That has taken a bit more time that I thought it would, mostly because I am so slow doing what I do, which is sitting on the front porch steps, using a kitchen spoon to put composted cow manure from the bag into pots so I can transplant the pretty plants I bought. I do a few a day, then rest for a couple of days. If these plants produce anything in the way of a crop for harvest it will be amazing, but it is giving me something entertaining to do, and a reason to go outside for a while, both of which are good for me.

Then April seemed like it was excessively busy, with something on the calendar almost every week day. Between my doctors appointments, Fabgrandpa’s appointments, an appointment for me at the Social Security office to apply for my retirement benefits, going to see an attorney to file bankruptcy, Easter at my Mother’s, and a party for my niece who was deployed to Afghanistan, we were going somewhere all the time. Even though we have known for some time that we would have to do the bankruptcy, it was still sad and generally disheartening to do it. The day the bank came to get the RV was the worst. I had not been in the trailer at all since we moved into the house, we no longer have a truck to pull it with, and I knew we would never be going anywhere in it again. But watching it being towed away by the bank was just so final. A sad day indeed.

So there ya go. To wrap it all up, I have lost weight, surrendered the trailer to the bank, filed bankruptcy, and planted a little garden. Some good things, some bad things. I really thought that losing weight would lessen my pain, but it hasn’t. It just seems to be worse, and in some new and different places along with the old places. But life goes on, doesn’t it? How has your year been?

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April Is Oral Cancer Awareness Month

Karen · 51 Comments

Close to 43,250 Americans will be diagnosed with oral or pharyngeal cancer this year. It will cause over 8,000 deaths, killing roughly 1 person per hour, 24 hours per day. Of those 43,250 newly diagnosed individuals, only slightly more than half will be alive in 5 years.

In case you didn’t know, April is Oral Cancer Awareness Month. Fabgrandpa is an Oral Cancer Survivor, since 2001. The treatment for this awful disease is surgery, radition, and or chemotherapy. Fabgrandpa had the surgery, and then 37 radiation treatments in 2001. Luckily he did not have to go through chemo. Not every patient with Oral Cancer is as lucky as my husband is. Some of them die, some of them have disfiguring scars, and others lose the ability to eat using their mouth, and have to be fed through a tube for the rest of their lives.

The key to preventing a death, disfigurement, and a feeding tube is early detection of Oral Cancer. One of the easiest ways to find Oral Cancer is to just look in your mouth and nose. Ask your dentist to do a routine check for Oral Cancer when you go for your regular checkups.

Great Expressions Dental Centers in the Atlanta area will be offering free oral cancer screenings to the public throughout the entire month of April – Oral Cancer Awareness Month. Call them today to make an appointment for your free exam.

Here are ways to help prevent Oral Cancer:

Avoid smoking and any type of tobacco product. According to the National Cancer Institute, tobacco use is the leading cause of oral cancer. Tobacco includes cigarettes, pipes, cigars and chewing tobacco. Not only can use of these products cause oral cancer in the mouth but also parts of the throat.
Limit alcohol use. Using alcohol is a large risk factor for oral cancer. The more alcoholic drinks consumed daily, the higher the risk of oral cancer. The risk is about twice as high in people who have three to four alcoholic drinks per day compared to those who don’t drink alcohol, according to the National Cancer Institute
Sun exposure. Repeated exposure to sunlight may increase the risk of lip cancer, which most often occurs on the lower lip. Applying chapstick with sunscreen everyday will help prevent sun damage and cancer.
Regular dentist visits and self-examinations. Scheduling your six month exams is a great way to keep a healthy mouth. The dentist is the first line of defense in identifying dental health problems that may be associated with oral cancer, so it’s important to meet with them regularly and ask for an oral cancer screening. In addition, be sure to take a few minutes each month for a self-exam to see if you can see or feel anything suspicious including lumps; bumps; tender areas; and any white, red or grey patches. If these symptoms are found, contact your dentist immediately.
Brushing and flossing daily. Brushing twice a day with a fluoride based toothpaste is critical in removing bacteria that causes cavities, gingivitis and bad breath. Flossing sometimes is easily forgotten, however, if you don’t floss, you will miss cleaning 35 percent of your tooth surfaces. Flossing in the evening will remove bacteria that like to feed on food particles throughout the day and prevent bad breath.
Spotting early and advanced indicators. Early indicators of oral cancer include: red or white discolorations of the soft tissues of the mouth, any sore that does not heal within 14 days and hoarseness which lasts for a prolonged period of time. Advanced indicators of oral cancer include: a sensation that something is stuck in your throat, numbness in the oral region, difficulty in moving the jaw or tongue, difficulty in swallowing, ear pain in one side only, or a lump that develops in the mouth or on the neck.
The giveaway package–you’ll get all of this!

To get more information about Oral Cancer, its symptoms, and treatments options, check out the Oral Cancer Foundation website.

In help you get a good start on oral health, GEDC is sponsoring a giveaway of a great package of dental products. One winner will receive a package containing a Great Expressions Dental Centers tote bag; a Phillips Sonicare Electric Toothbrush; a Phillips Sonicare Air Floss; a travel bag with toothpaste, a toothbrush, a toothbrush holder, and floss; a Zoom Tooth Whitening Pen, a water bottle, and a lip balm.

Enter to win this package using the Giveaway Tools entry form below:

Entry -Form

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What The Affordable Healthcare Act Has Done For Me

Karen · 12 Comments

After more than a month of trying every day several times a day, I finally got signed in to the Healthcare.gov website and set up my account. I went through all the steps of putting in all the information, and at the end, I was emailed a PDF file with the results.

The results of my efforts are that I do not make enough money to be eligible for help purchasing a healthcare insurance policy. You see, you have to put in how much money you will get per month at the start of 2014. On January 1, 2014, Fabgrandpa and I will have exactly two sources of income. He gets Social Security in the amount of $894 per month, and I get a pension from AT&T in the amount of $429 a month.

For two people making that little bit of income, there is no provision in the Affordable Health Care Act to assist in purchasing a health insurance policy. The program that would have provided a stop-gap to help those who are making under the poverty line income was the Medicaid program, which is administered by the states. The State of Georgia, where I happen to life, has opted out of the expanded Medicaid option, leaving me as a living breathing human being with no option for my health care, save one.

Quote from my eligibility response:

Review the table below with your eligibility results. Karen Eidson – Based on the information you provided, the
new federal health care law provides that you could be eligible for free or low cost health care through
COMPASS. However, the state of GA has chosen not to offer you this new health care coverage at this time.

That one option that I have, from the official denial of eligibility from the federal government health insurance plan, is that I have the option to go to a community health care center for my healthcare needs. Here is the quote from that section of my results notification:

The health care law has expanded funding to community health centers, which provide primary care for millions of Americans. These centers provide services either for free or on a sliding scale based on your income. Learn more about getting care at a community health center on HealthCare.gov.

OK, that sounds simple enough, right? Well, a couple of months ago when I had to go to the WOCN to have someone look at my stoma because it was getting infected, I had to fill out paperwork to apply for financial assistance from the community health care center. Fabgrandpa and I had to provide proof of all our financials–all our bills and all of our income. The end result of that venture was for them to tell us that were were denied assistance for my healthcare because WE MAKE TOO MUCH MONEY.

So, which is it, government people? Do we make too much or do we make not enough? Either way, I am the person with the medical problems who can not get in to see a doctor.

Now, with all that being said, I can opt to fill out the Healthcare.gov again whenever, if ever, I am approved for disability. I am at the point of waiting for a hearing where I can go before a Social Security Judge. IF I am approved for disability, the income I would receive from that would put us over the bottom line of poverty enough to make me eligible to buy a health insurance policy through the Affordable Health Care Act. From what I have been told by the attorney who is handling my case, that could be another three or four months, so lets just say I am looking at end of February to apply again.

If I am turned down for disability, then I have to wait until I am 62 to be able to start drawing my Social Security. I will be 62 in May, so with the application and the waiting for the income, then lets say that I am looking at June or July to be able to get health insurance coverage. It might not sound like a long time to some people, but to me, it seems like forever. I need health care NOW. I have been waiting since June of 2012.

And since every time I am in a group of people who start discussing health care and social aid of any kind, the talk ALWAYS turns ugly, at least to me, with people saying that it is lazy people, people who are unwilling to work, scum of the earth, who are the people who do not have health insurance because they won’t get out there and get a job. Well, I HAD a job that provided health care. I was laid off from that job when I was 46, and when the money ran out, so did the health insurance. Just because you CAN purchase your health insurance through the COBRA plan or whatever, if you can’t find a job making the money you need to be able to pay your bills, it is hard or impossible to come up with the $1200 premium you would have to pay to keep your insurance.

So, I lost my health insurance in 1996. Ever since then, I have not worked on or been offered a job that offered health insurance as a benefit. That is NOT saying that I have NOT WORKED. I worked some hard jobs, some easy jobs. Not all employers offer health insurance to their employees. So, you can be just as hard working as the next person and still not have any health insurance. So many people in this country need to stop judging everyone by their own personal experience. Just because you are one of the ones whose employer provides your insurance plan, doesn’t mean that the person sitting next to you has that same benefit.

So, there you have it. What the Affordable Health Care Act is going to do for me. Nada. Zip. At least not right now. So, if you can still get insurance, be happy.

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Can I Share A Little Frustration With You?

Karen · 5 Comments

That’s me last year at New Frontiers Grocery Store in Flagstaff, Arizona, on a motorized shopping car. Before I got sick last year, I never dreamed that I would be one of Those People. You know, those people who use the electric carts when they are out shopping. The ones that “regular” people look at and sort of roll their eyes discreetly or get that look on their face that says “You aren’t disabled, why are you on that cart?” Before I got sick and had to use them, I never knew that “regular” people could be so rude and thoughtless.

No, I do NOT look like I am disabled when you see me out in public. I am NOT missing a limb. I am not nor do I look like I am 95 years old. I do not have any indication that there is a problem with my body that does not allow me to walk more than about fifty feet without having to sit down.

Yet, I AM that person on that electric cart. I DO have a disability that keeps me from being able to walk through the entire grocery store or through Wal-Mart, or the mall. I am in pain twenty four hours a day, seven days a week, and if I exert myself today enough to walk through the grocery store, I will not be able to get out of my recliner tomorrow. It is just a fact of MY life. A fact that I do not want, nor am I ready for. So, I do not understand the people who think that I am just too lazy or too fat, or too whatever, to get off that cart and walk.

I do not understand the people who just stand there in your way, who do not offer to move out of the way, if you come up on the cart and all you want to do is get by to finish your shopping so you can go home. I have become someone who hates to go out in public because I hate the way people look at me when I am riding on a cart. Why is it that if you do what you have to do to survive in what has become your world, people think less of you.

It is so apparent in the looks and on the faces of people out there in public that they think that all of us who have been afflicted in some way are just faking it. Do you REALLY think I get on that cart for the fun of it? If you are one of those regular people who thinks this way, you should try an experiment.

Go to your favorite store, just once, and get on one of those carts. Go on a Friday or a Saturday for best results in the experiment. Drive that cart through the entire store, just going about your daily business, trying to buy your groceries or whatever you are there for. See how many times people will just step in your way. See how many times people will look at you and get a “look” on their face. See how many times you become invisible to the world, in plain sight of others. It is not fun to ride that ride.

Vent over. You may continue with your life now.

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New Meds Are Kicking My Butt

Karen · 13 Comments

I really meant to write more last week. I had penciled in on my calendar “write blog posts” . But then, I went to my mental health appointment, and they changed my meds. The change from Celexa to Cymbalta for depression is supposed to help me feel better in the long run, but for over a week now, all I have done is sleep. In the bed, in the recliner, in the car, in the chair in Mama’s room at the rehab center. Yesterday was the first day that I felt awake, but today the drowsiness is back. If this doesn’t change soon, I’m going to ask them to change me again to something else.

My daily routine. I have to take all those.

Just in case you are new, I have been in pain 24/7 since my surgery in May of 2012. I had some intestinal issues, which led to surgery to remove a blockage, which led to an intestinal rupture, which led to peritonitis, which led to major complications and five surgeries. In the end, I lost some of my abdominal muscle and went home after 34 days in the hospital with a colostomy. The colostomy works fine and does not give me any trouble. Except that I do not want to be this woman with a pouch hanging off of my abdomen.

The pain is from the loss of muscle from my abdomen. I have nothing to support my gut, so that it feels like it is falling out all the time, most likely because it is. I can not do many things I did before the surgery, 15 months later. I have been told by three doctors that I need to have two more surgeries to repair the damage done from the first round of surgeries, but because I do not have health insurance, and these two surgeries are “elective” no doctor will do them. So, I wait. For what, I don’t know.

At first I was waiting for the Affordable Health Care Act to kick in in January 2014, but then I found out that the state of Georgia has opted out of the program.

Via: The Advisory Board Company

I thought that meant that there would be no option for me to get a low cost insurance policy from a state pool. But I have since learned that what it means is that if were living under the federal poverty level I would not be eligible for medicaid.

I WILL, however, be able to get a subsidized policy under the AHCA. After spending a little over two hours searching the internet I finally found the Healthcare.gov website. It has a ton of information about the Affordable Health Care Act, how it will affect you as an individual, which states have a their own health insurance pools, and more. There is even a calculator, created by the Henry J. Kaiser Family Foundation, that will show you your approximate costs for health insurance under the Affordable Health Care Act based on your particular circumstances.

I used the calculator to find out that my health insurance premium will be approximately $80 a month, with no more than $2250 out of pocket deductibles per year. I hope that is right, because I have not been able to afford health care insurance since 2000, when my coverage under COBRA expired. I hope that the Affordable Health Care Act will make it possible for me to get the surgery I need to repair the damage to my abdomen that happened last year. I want to be free of pain, and the depression it brings.

I want to live a normal life, and be back to my normal self. If I have to wait until January 1, 2014 for that to happen, that is just a little while longer. It’s unfortunate that I have many friends and family members who are of the opinion that this will be the end of America as we know it. I am ready for the change, ready to be a happy healthy person again. Sorry this turned into a rant.

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My Visit To The WOCN

Karen · 2 Comments

For those of you are interested in knowing what a stoma is and how to apply the colostomy bag, here is a YouTube Video. It is not me, and not my stoma, and it may be TMI, so don’t go look if you get queasy with stuff like that.

A couple of weeks ago, I noticed when I took off my colostomy appliance (the flange and bag that adheres to my abdomen) to change it, that I had some irritation on the skin surrounding the stoma. I was afraid that it was getting infected, so I called the Wound Care Center associated with Tanner Medical Center to try to get an appointment with them. They said I would need to go to my primary care physician first for a referral.

The next day, I called Dr. Howell, my primary, and made an appointment for that same afternoon. When I went in, I told her what was going on, and she took a look at my stoma. I did not take the whole appliance off, just opened up the bag, but she could see the red irritated area I was talking about. She diagnosed it as Ulcerated Stoma and told me I was right to come in and get a referral. She called to make an appointment for me at the Wound Care Center, and did not charge me for the visit to her office, which was very nice of her to do since I still do not have health insurance.

It was five days until my appointment at Wound Care. I worried the whole five days about having an ulceration because that type of thing can lead to failure of the stoma, which would mean more surgery. On the day of my appointment, I went in the room, and talked to the nurse, and told her what was going on. I took the appliance completely off, (and hoped that I wouldn’t have any “activity” while it was off).

When the WOCN came in she took one look, and asked me if we had any of my supplies with us. Fabgrandpa got one kit out of my backpack. When she looked at my kit, she said immediately that I was using supplies that are too big. The irritation of the skin around my stoma was because the opening of the flange was too big, allowing feces to get on my skin and stay there.

She gave us some samples of supplies of the correct size, and showed Fabgrandpa how to care for the irritated area so that it could heal. She also said there was no actual ulcer and not even any infection so I did not have to get an antibiotic. I have a follow up appointment in three weeks for the WOCN to check to see if the irritation is clearing up. I think it is going to be just fine. And now that we know what to buy, we’ll get the right size and won’t have this problem again.

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Ta Da! I Can Wear Jeans Again!

Karen · 13 Comments

Ever since I came home from the hospital in June, I have not been able to wear my jeans. Even though I lost over fifty pounds, those old jeans were just too uncomfortable on my abdomen to be able to wear them. Now I don’t know about you, but to me, if I am not comfortable in my clothing, I am just miserable. The other thing is that the only thing I could find that WAS comfortable to wear were sweat pants.

I have NEVER in my life worn sweat pants outside of the house. Wearing them made me feel frumpy. Old. Unattractive. I think that contributed to my depression. A while back, I started thinking about getting some maternity jeans to see if I could wear them. I asked around in a forum I am part of, Momdot, that has a lot of young moms as members, to find out what the best brand of maternity jeans would be. I got lots of recommendations for them. But I felt sort of silly being a 60 year old Grandma going into a store to buy maternity pants.

Me with my daughter, Emily. The baby is scheduled to be born by C-Section in TWO DAYS!

Then I called my daughter, Emily, who is pregnant right now, and asked her where I could buy some maternity jeans. She told me that she had a couple of pairs that she was not able to wear and she would give them to me the next time she saw me. Today, she came over to visit with me, and brought the jeans with her.

When I put them on, you can’t tell that they are maternity pants. But, OH! do they fit, and they do not cause me discomfort by being too tight across my abdomen. They accomodate my colostomy bag quite well, too. I am so happy to be able to dress the way I want to dress again! Yay!

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Do You Google Your Symptoms?

Karen · 6 Comments

At my daughter’s baby shower, we played a game, where each woman present had to write down a piece of advice for the new mother. On my card I wrote, “Don’t google the symptoms when the baby is sick. Call your mother and she will do it for you.” That got a good laugh, but really, how many of us do this? I know I do.

Ever since I got my records from the hospital after my surgery, I have been googling the medical terms that I don’t understand, and by doing so, I have a learned a lot about what happened to me. I had no idea how close to death’s door I really was until I read medical articles about Abdominal Compartment Syndrome and Intraabdominal Hypertension and Sepsis

While it is sometimes frightening to read about all these things, it brings me a sense of relief somehow to know what happened to me, and that I lived through it. It could have gone the other way, and I wouldn’t be here today.

One of the most interesting things to me, is that when I started my google search a couple of months ago, I really didn’t know what to search for. I just took one of the terms I found in my discharge summary from the hospital, and went from there. You find one thing, and then another, and then another. You can spend many hours, days, weeks, reading all the information that you can find when you get started in the right direction.

Some would say that this is an obsession, and it may well be, but I just have a need to know if the way I feel NOW, months after my surgery, if normal. No one wants to be abnormal, do they? So, I find myself doing a lot of time searching the internet and reading article after article pertaining to persistent pain, abdominal complications, endometriosis, and on and on and on. For instance, I had no idea that scar tissue from edometriosis could come back after a complete hysterectomy.

Today I found an article called Chronic Post Surgical Pain. The gist of the article is that it is common for people to have debilitating chronic post surgical pain, and that doctors should be telling their patients that it could be a side effect of the surgery before they go under the knife. While I would have still had the surgery that I had, I would at least have had the knowledge that I could be in pain for the rest of my life as a result of it. Instead, it has taken me almost seven months of searching to find out on my own that the pain I am experiencing could very well last for the rest of my life.

It just makes me mad that not one of the doctors I have seen has told me this. That I had to find it out for myself, by getting just the right combination of search words to type in to search for information. Is there anyone you know, or are you yourself, experiencing pain in the abdominal wall after extensive surgery? Did the doctor mention anything at all about the possibility of chronic pain as a result of the surgery?

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