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New to Methotrexate? My journey with RA began in March 2007.  I feel very fortunate because I was able to get in with a rheumatologist and had my symptoms under control by October of that same year.  My rheumatoid arthritis...

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A Magical Day... Before Christmas, my family and I embarked on a really quick ski trip.  Skiing has always been one of my favorite outdoor winter activities.  I've never considered myself an athlete (my family would...

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RA...the gift that just keeps on giving I'll have to admit that I have not done a lot of in depth research about RA.  I suppose I have just chosen to limit my research to areas that seem important to me for the here and now.  It's not important...

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Osteochondroma drama For those of you that have read all of my posts...(I'm sure that is a small number :)) you will know that I have RA, my husband has CAD (Coronary artery disease) and my daughter had ITP (idiopathic thrombocytopenia...

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You may be seated...Can I hear an amen? I attended a retreat for women at my church this weekend. It was a great opportunity to get away from my normal routine and meet other women in the community. The main focus of the weekend was building...

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Rheumatoid Arthritis...Could we not have come up with... Rheumatoid...makes me think of hemorrhoid.   The similarity between the two is that they both involve pain and both could easily fit in the "pain in the a**" category. Then, there's the word arthritis. ...

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I really like my doctor...a lot Within a few months, I was referred to a rheumatologist...an excellent one. Over the course of a couple of months of testing with negative results, she told me that I have seronegative rheumatoid arthritis. ...

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Welcome to my blog Welcome to my first posting. I'm not exactly sure what I'm doing, so prepare to be amused as I fumble through the world of blogging. My idea for this came from boredom. I have some extra time on my...

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“You may be seated”…Can I hear an amen?

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Posted on : 09-11-2009 | By : admin | In : comfort, inspiration, rheumatoid arthritis

I attended a retreat for women at my church this weekend. It was a great opportunity to get away from my normal routine and meet other women in the community. The main focus of the weekend was building friendships with other women. The food, fellowship, music, and worship was outstanding and I enjoyed it so much. However, for those of us with RA I ask…do we really have to stand up to sing praise? Now, I already know the answer to this question, but I still have to ask. You know how it is…you get that feeling that your joint/s are starting to swell…you start shifting…you try standing on one leg. After standing on one leg for a while and trying to balance and bumping into the person next to you, your hip begins to hurt, so you try to put some weight back on your foot and feel that familiar sting and wish you had your gel pack.  It’s hard to concentrate on worship when you are constantly trying to shift your weight to a position that doesn’t hurt.

Because I try to be an optimist, I have found a bright spot in modern worship services…at least we don’t have to worry about holding the hymnal now that the words are on the big screens! I wonder if they were thinking about those of us with RA when this concept was started? Hmmmm….nope, probably not. But, nonetheless it’s helpful, so yeah for words on the screen! (It’s also great for those of us that just had to start wearing glasses…but that’s another story for another day.)

I looked around and noticed that there were a few people sitting down but, if I sat down what would people think?   (I look forward to the day when I’ll not care what people think)  But until that day, I’ll just  shift and wiggle and balance to get through it until the much anticipated words are spoken…”you may be seated”.  Can I hear an amen?  Amen.

Oh happy day…

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Posted on : 05-11-2009 | By : admin | In : comfort, exercise

Oh happy day… sitting here with my foot on the ottoman and a frozen gel pack on top.

This little flare up is odd.  My foot isn’t very swollen, but is hot & sensitive to the touch and doesn’t want to bend.  Strange.  And, naturally it is rearing its ugly head as I’m preparing to attend a weekend retreat that starts tomorrow.  It’s always nice when people’s first impression of you includes a limp and a swollen foot.  But, guess what RA?!  I’m going anyway.  Aaaarrgghh..

As I searched for a picture of my beloved gel pack,  I found this great recipe for making your own.  Just click this link for the recipe & instructions.

 

Be sure & make a deposit today

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Posted on : 03-11-2009 | By : admin | In : inspiration

I received the following email this morning and decided to share.  It applies to all of us.  The author is unknown.

A 92-year-old, petite, well-poised and proud man, who is fully dressed each morning by eight o’clock, with his hair fashionably combed and shaved perfectly, even though he is legally blind, moved to a nursing home today.

His wife of 70 years recently passed away, making the move necessary. After many hours of waiting patiently in the lobby of the nursing home, he smiled sweetly when told his room was ready.

As he maneuvered his walker to the elevator, I provided a visual description of his tiny room, including the eyelet sheets that had been hung on his window.

“I love it,” he stated with the enthusiasm of an eight-year-old having just been presented with a new puppy.

“Mr. Jones, you haven’t seen the room; just wait.”I replied.

“That doesn’t have anything to do with it,” he replied. “Happiness is something you decide on ahead of time. Whether I like my room or not doesn’t depend on how the furniture is arranged…it’s how I arrange my mind. I already decided to love it. ‘It’s a decision I make every morning when I wake up. I have a choice; I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for the ones that do. Each day is a gift, and as long as my eyes open, I’ll focus on the new day and all the happy memories I’ve stored away…Just for this time in my life.”

Old age is like a bank account. You withdraw from what you’ve put in.

So, my advice to you would be to deposit a lot of happiness in the bank account of memories!

-          Author Unknown

Rheumatoid Arthritis…Could we not have come up with a more creative name for this?

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Posted on : 02-11-2009 | By : admin | In : rheumatoid arthritis

99535218_fdfab8c28b_mRheumatoid…makes me think of hemorrhoid.   The similarity between the two is that they both involve pain and both could easily fit in the “pain in the a**” category.

Then, there’s the word arthritis.  Arthritis…the kind your grandmother had is not the same as rheumatoid arthritis.  I think we’ve all probably experienced a conversation that went something like this…”Oh, you have arthritis?”  Followed by, “you know… Aleve really works for my Aunt Gracie”.  Let me tell you something that I know for sure…when you are having an RA flare, Aleve is no more effective than eating a sweet tart. Rheumatoid Arthritis is an autoimmune disease in which the body’s defense system attacks itself and causes the joint lining to become inflamed and swell.  I know that there is pain involved with any of the over one hundred types of arthritis, but I’m just sayin’…RA provides a different kind of pain.

There are so many misconceptions & myths about rheumatoid arthritis.  I think a name change is in order.  Any ideas?

I really like my doctor…a lot

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Within a few months, I was referred to a rheumatologist…an excellent one. Over the course of a couple of months of testing with negative results, she told me that I have seronegative rheumatoid arthritis.  She said that approximately 20% of all patients she sees test negative for rheumatoid arthritis, but actually have the symptoms.  It has always been expected, so it wasn’t too much of a surprise. I had already done the research, so I was prepared. RA isn’t something that I would wish on anyone, but in the big scheme of things….it’s manageable. At the time, I had already lost a friend to cancer, so I didn’t take the time to participate in a pity party. I have a life and a happy family to be a part of…upward and onward!

My rheumatologist prescribed another round of prednisone and started me on methotrexate and folic acid . The folic acid helps to prevent hair loss and mouth ulcers, side effects of the methotrexate. Within three weeks, my stiffness and swelling went away. In the three years since diagnosis, I have only had two major flares! Many people have a poor response to methotrexate so I feel very blessed. My only bad reaction to all of the medications that were prescribed earlier was to Mobix. My face blew up like a blowfish. But, even this gave an opportunity for my family to laugh at me…we like to laugh.

My morning started out in this rheumatologist’s office for a checkup. It is always nice to go in and report that I am doing well. I don’t think she hears that from many of her patients. We decided that I could try reducing my methotrexate in the off chance that I am in remission. Here’s hoping. (Whatever happens….I’m still wearing my Tevas)

With a name like “Mush”…they have to be good

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Posted on : 30-10-2009 | By : admin | In : comfort
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About three years ago, I started having some really strange problems with my feet…swelling, redness, and pain so intense that the breeze from the ceiling fan was excruciating. Multiple trips to my local doctor and test results did not reveal anything abnormal. My symptoms would go away, come back and then change to the other foot. The pain and stiffness began to move to my elbows and shoulders. I can remember many times having to hold up my elbow to brush my teeth. It was a very strange time in my life.  Teva flip flops with the mush sole became my best friend and my only footwear. I had a black pair for casual attire and a pink pair for special occasions. I am glad that I didn’t have many special occasions that summer.

Diet Dr. Pepper…are you making me fat?

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Posted on : 29-10-2009 | By : admin | In : artificial sweeteners
I love my Diet Dr. Pepper…but it’s all starting to make some sort of  twisted sense now…
It’s a conspiracy. The makers of diet drinks have all conspired to keep us all fat so that we will continue to buy their products. Pretty darn sick. According to Dr. Weil… our beloved diet drinks may be keeping us fat instead of helping us get thin. Read his article here.
I’ve been drinking diet drinks for years, mainly to stay away from the huge amount of sugar in regular soft drinks. So now, I’m hooked. I’ve tried to cheat and go back to the regular Dr. Pepper, but I just can’t do it. Each gulp makes me think that I’m drinking wedding cake. So, now what are we all going to do? Drink water? (yeah, yeah, yeah….I know we’re supposed to and have read all the reports….still hate it)
Until I can kick my addiction to Diet Dr. Pepper, I have stumbled upon two alternatives. The first is Torani sugar free syrups. My husband and I were shopping at our local World Market last night and I noticed a woman putting two bottles of Torani in her basket. Another lady commented to her, “you must really like that stuff”. The other woman told her that she uses it to flavor her water…and said that that it was much cheaper than the flavored water in the stores. I’m sure that many of you reading this are saying…duh…well, of course….I thought everyone knew that. But, it was news to me. I tried it using my own filtered tap water and it was very good. It is sweetened with Splenda, so until the experts tell us that Splenda is also bad for us…I’ll buy some more on my next trip. I tried the peach this time and it’s just….well…peachy.

The second alternative is Diet Rite soda. It's not as good as my diet Dr. Pepper, but it also is sweetened with Splenda and resembles my favorite fizzy soft drink.
On a serious note...you can do one quick search and find out loads of information about all of the negative health implications of artificial sweeteners.  Here's an article from WebMD.

No Kodak Moment For Me…today anyway

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Posted on : 13-10-2009 | By : admin | In : humor
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Today was one of those days…just an all around gloomy yuck day. I like to think of myself as an optimist and spend a lot of time trying to encourage and cheer up those around me. However, I do have my own little moments…moments in which vanity can completely sour my day. Today, I had the bright idea of taking a photo of myself to update my Facebook profile. I have a new camera with a timer and thought….well, I should do it. After all, I’m always the one behind the camera taking the pictures and am pretty much absent from all of my family’s pictures, for the last 25 years or so. So, here we go…for posterity’s sake.

Anyway, I start out by going to my cosmetic drawer and fixing up a tad. I’ve never been one that wears much makeup, but I do know and appreciate the value of a little here and there. I have the same attitude about my hair. I know that I have to pay for highlights, otherwise I look really tired. In my 20’s & 30’s, I used to do the whole hot roller, teasing, hairspray thing. Now, I tend to do the roller brush, little bit of teasing, and spritz of hairspray thing. After the quick primping session, I take my dog and we go outside for some pics. Okay, I figured out how to use the timer…pretty easy. I came in and uploaded the pics to my computer. Somewhere after uploading and watching the photos appear on the screen, I felt my entire body sink into a lifeless little puddle of self-loathing and disbelief. What I saw in those photos was not what I was expecting.

I don’t know where I went, but I was nowhere to be found in those pictures. So, I decided….well, they were taken in direct sunlight. Yes, that was it! Nobody should take a picture in direct sunlight. So, off to the backyard again. This time, I would take some pictures in the softer, more friendly shade. After uploading… I must need to try moonlight without a flash.

I told my husband about my experience when he came home from work. He’s a smart man, so he knew what he must say….oh, honey…you’re still pretty….you’re just being silly. He did gently add that my change to bare mineral makeup about a year ago, might not have been the best choice. Now he tells me! Anyway, at least someone told me. So, in an attempt to practice what I preach…I decided that I should do something instead of just whine….so, I did an internet search and looked up my local Mary Kay lady. Those pink Cadillac ladies always look good. Maybe she can help a girl out.

Save the Tatas!

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Posted on : 12-10-2009 | By : admin | In : bioidentical hormones, womens' health

Well, today was the one day that most women dread the other 364 days of the year…their yearly visit to the gynecologist. I say most, because there are always exceptions. I’ve been around long enough to know that some probably will say something like…”no, I actually enjoy the experience of making sure that my body is healthy”. Whatever. An added bonus at today’s visit was the mammogram. I wasn’t aware that it was scheduled today as a part of this annual event. The good news was that they used a new digital mammography machine. The radiology technician was so excited to share that I was one of the first to get to take advantage of this new technology.  My assessment:  Big deal. It still uses the same principle of flattening your boobs out like pancakes. I actually looked down at my flattened size 34B in between those two sheets of Plexiglas with sadness….poor little thing. Surely, somebody somewhere can come up with a better way to do this. The tech and I discussed why someone hasn’t come up with a scrotum exam using this type of concept…I’ll bet that would accelerate the invention process! In the mean time, we’ll be waiting! I will say, for those that have not had a mammogram yet, it’s really not that bad…just uncomfortable.  It is so worth a little bit of discomfort to know that you are doing everything in your power to protect your breast health.  Do it!

The other good news today was that I didn’t have to do the other exam because I started my period yesterday….great… so it’s now rescheduled for next week. I didn’t cancel because I wanted to talk to my gyno about “perimenopause”. I’m 46 and have started having some weird symptoms……heavy periods, periods close together….missed periods, etc. So, the nurse discussed with the gyno and decided that I should have blood work done to check my hormone levels, then we could have a long talk at my visit next week.

I told the nurse that I had been researching bioidentical hormones with the ulterior motive of finding out the direction that next week’s visit would go. I found out in about ten seconds that my gyno is not a fan of bioidentical hormones. The nurse told me that they have seen many women that have really gotten into trouble by using bioidentical hormones that are compounded at pharmacies. She said that typically what happens is that they are given far too much of the hormone which starts another set of problems for the patient. I then asked if they would be testing my progesterone levels and was told “no”. She said that they only do the FSH and thyroid tests. She said that they do not do the “spit on a swab” tests, as she called it to check progesterone levels. She was referring to “saliva” testing for hormone levels. There are independent labs out the wazoo that are now doing saliva tests through the mail…..gotta make you wonder how reliable this method can be.

Bioidentical hormones have been widely discussed in the past year on Dr. Phil and many others. Suzanne Somers has written a book about biodenticals that has been met with both lofty praise and loads of criticism. Her approach to taking care of her own health is a little unconventional, but hey….it seems to work for her and she seems healthy and happy. Isn’t this the goal for all of us?

I enjoyed this article written in part by Dr. Erika Schwartz and published in the New York Times about hormone replacement therapy.

I suppose we will see after next week’s visit what my blood work reveals and if I am in perimenopause or the beginning stages of menopause. It is also a possibility that my symptoms are due largely due to side effects of my RA medication. Who knows? What I do know is that I will listen to my gynecologist’s opinion about hormone replacement therapy. I will then make a decision based on her knowledge and my research. After all, I’m not a doctor, but I am a thinker.  I’ve also owned my body for quite some time.

The Day My Heart Could Have Broken

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Posted on : 10-10-2009 | By : admin | In : heart disease

It was a Saturday. My husband’s family had gathered at my in-laws to do some painting on their newest “fixer upper”. We were all winding down and decided that it was time to stop and eat dinner together at our favorite Mexican food restaurant. The guys went outside and picked up a basketball and began to play for a little while. After a few minutes, we all loaded up and went to the restaurant. After ordering, my sweaty husband got my attention and asked me to bring his home because he wasn’t feeling well. So, I stayed with the rest of the family and brought his meal home. I found him in bed complaining of pain in his diaphragm. He said that he thought he must be getting a stomach virus. He was only 43, and honestly a heart attack never entered my mind. He is a tall guy with an athletic build, not overweight, low cholesterol, non-smoker…..no real risk factors except for one…stress. His job was stressful and he is a major people pleaser.

He happens to be one of those leave me alone….I’m sickk kind of people. I, on the other hand, like to be the center of attention when I’m sick. So, it’s hard for me not to constantly check in on my patient and want to help. I did my best to let him rest, but it wasn’t easy. We didn’t go to church the next morning and he seemed to be feeling better. On Monday morning, he got up and went to work…he had probably a million sick days built up…but those must be for sissies…not for big strapping healthy men.

Later that morning, his secretary called me at my office. She told me that she was really worried about my husband and said that “his color just doesn’t look right”. I immediately called the local rural clinic and made him an appointment. I met him out there as they were giving him the results of the blood work. Fortunately for us, the physician that saw my husband that day previously worked in a trauma unit at a large hospital and knew immediately what had happened. My husband’s blood enzyme level test was elevated, indicating that he had a heart attack. Instead of the doctor telling him those words, he just said that the levels were elevated and that he needed to see a cardiologist. He told him that he had made him an appointment for the next day. So, I dealt with the knowledge that my husband could easily have died on Saturday, or Sunday, or even today. I also dealt with a very long evening and night. He wasn’t very concerned because he didn’t realize what had happened and yes…he went ahead and attended a board meeting that evening. I spent a sleepless night just listening to him breathe.

The next morning when he was in the shower, I discreetly packed an overnight bag for him. I knew that they would keep him. I say discreetly, because I wanted him to stay calm. I tend to believe that ignorance is bliss. Not that he’s ignorant, of course…..just a man in total and complete denial.

We got to the cardiologist’s office with lab work in hand. The cardiologist took one look at it and said, “well, it looks like you had a heart attack”. My husband’s response was typical, “really?” he said. The doctor said that he would need to check in at the hospital for a heart catheterization. So, we walked out of the office and drove over to the hospital.   I grabbed the overnight bag and just looked at him and said “I’m sorry….I knew we would be staying.”

A friend from high school that was now the director of cardiology at the cardiologist’s office was there to keep me company during the heart catheterization procedure. It really was a blessing because he told me what to expect. I do better when I know what is happening. What I wasn’t prepared for was the news that my husband needed open heart surgery….two by-passes. I was terrified. I had seen the procedure on ER….I knew what was involved. Thinking about our two children, ages 11 and 16 made me even more emotional. But, after viewing the films that revealed a complete blockage on one artery, and an 80% blockage on the artery that is called “the widow-maker“…I knew that it was absolutely necessary.

The surgery didn’t happen immediately. Weird blood work delayed the surgery until Thursday morning. In the meantime, our hospital room was a revolving door of well meaning friends, relatives, and my husband’s employees. This man is not only loved by me, but just about anyone that knows him. He’s that kind of guy. The constant stream of visitors was great, but exhausting. I made a mental note to remember for the future…keep your hospital visits short….say hello, I’m thinking about you, I’ll be praying, and let me know if I can help…then leave.

The morning of the surgery finally arrived. He acted as though he was going in for a root canal. So, I kissed him and watched as they rolled the other half of my heart down to the operating room. The waiting room, again, was filled and overflowing with our family and friends. After about four hours, I started getting really anxious. At the fifth hour, I had to get up and away from everybody. I needed a quiet place. I found a little hideaway down the hall, but within view of the hallway that the Dr. would come down after the surgery. It was during this time that I felt the most complete and empty feeling that I have ever experienced. I just sat down and cried and prayed.  I was never told that they had any trouble getting his heart beating again…but I felt so alone. I have always wondered…

I don’t know how much time passed, but a dear friend came around the corner and told me that the doctor was coming down the hall. Like a row of dominoes, I followed in behind the doctor, followed by our family and friends as we filed into the “family” room off of the waiting room. It was the longest twenty steps I had ever taken because the idea that he was taking us into the “family” room was terrifying. The doctor stopped and turned around….I stopped almost bumping into him followed by a chain reaction. We must have looked like a bunch of bozos. But, the news was good. He had made it through the surgery without complications. Thank you Lord….

Thankfully, my friend had prepared me for what I would see when I got to see my husband in ICU. Tubes, machines, more tubes, wires, and masks would be everywhere. Before he went in for surgery, we came up with a “secret” message between the two of us. We knew that he would be on a ventilator for a while and wouldn’t be able to talk. I told him to raise his eyebrow if he could hear me and was okay. When I went in to see him for the first time, I was able to look past all of the tubes, machines, more tubes, wires, and masks and look into his eyes. My first question was, “remember our secret?” Not only did he raise one eyebrow, he raised both…several times…separately….together…over and over again. Thank you Lord for my husband, the comedian. Thank you Lord.

ICU is not a particularly great place for the family, but I liked the idea that a nurse was sitting five feet from his bed 24/7. I felt really important once when the respiratory therapist told me that he was trying to get him off the ventilator, but that my husband was having trouble. I watched for a little while and realized that he was doing the opposite of what he was told…typical man. I told him, honey..breathe in when I say breathe in…then breathe out..and the rest is history. I may have a future as a respiratory therapist.

The next day, he was released from ICU and put into a regular room…after first being placed into a shared room with a man that was throwing up. I’m normally a very polite and courteous woman, but when someone isn’t taking care of my family…I can get ugly. The doctor had requested a private room and the nursing staff was trying to tell me that there wasn’t one available. I had a “conversation” with the head nurse and I’m certain that I became the witch with a b….in the last room down the hall.

The next four days were pretty uneventful. Uneventful is good when you are a heart patient. I hadn’t left the hospital since he was admitted, so was pretty exhausted. I started having panic attacks that give you the same symptoms as a heart attack. But, I felt pretty confident that I wouldn’t also be having a heart attack. I mean, really..what are the odds of that? So I just got through it. I knew if I said anything to anybody that they might make me leave. I couldn’t leave…after all, I had to give him his sponge baths. I had to protect him from my mother trying to do it. She actually tried to convince him that she had given plenty of sponge baths and had seen just about everything. He just responded by raising his eyebrow and giving me that special “look”. Enough said. 

It’s been nine years now since the surgery and he is doing well. We did change cardiologists around year seven because the first one wouldn’t ever do any testing other than blood work. I kind of insisted that he get a second opinion. I think the good Lord just lets us know when something isn’t right. Sure enough, he failed the stress test and the echo-cardiogram. So, the cardiologist recommended another heart catheterization. He said that it wasn’t absolutely necessary to do it immediately since he wasn’t having any symptoms, but that he could do it now…or later. So, we chose now. This time, the blockage was opened up by a stent and he was home the next day. Thank you Lord.

There have been many good things that have come from his experience. Droves of men have gone for checkups as a result of his heart attack and surgery…simply because he didn’t look like the type that was at risk. He is always advising men to go and get those strange symptoms checked out. If I had it all to do over again, I would have made sure that he had seen a cardiologist before his 40th birthday. As strange as it may sound, older men are more likely to survive heart attacks than younger men because their arteries have formed alternate pathways over time. Younger men don’t have these alternate pathways, so when they have a blockage…it can be catastrophic. So, please pay attention to the warning signs of a heart attack. And, make your husband an appointment to see a cardiologist even before he has any symptoms. Ask around and be sure to find one that focuses on heart disease prevention instead of just treatment and medication. Follow your instincts and find a physician you trust. Some people tend to be intimidated by doctors and think that if they’re a doctor, they can be trusted to care for you and your family. Just remember what somebody told me one time…”just because they’re a doctor doesn’t mean that they graduated at the top of their class”.

Thank you Lord…for good doctors, nurses, and surgeons that are dedicated and devoted to the profession of medicine and healing.

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