(Please note that any answers may be used in a magazine article and/or book at some point in time).  Thank you.

Ways to be a friend to someone who is chronically ill…

1. At least, occasionally say, “How are you doing?”  Don’t ignore the person’s illness just because it’s not going anywhere.  I have a “friend” who hardly ever asks how I’m doing, and it does not go unnoticed. 

2. Don’t get frustrated or become judgemental when the sick person responds to “How are you doing?” with the same answer each time you ask how they’re doing.  Telling the truth is not complaining.  If their back constantly hurts, then their back constantly hurts.  The ill person shouldn’t have to lie about or omit  how they feel in order to make you more comfortable. 

3. Listen.  Sometimes a sick person just wants to vent or get it out.  It’s not being ungrateful; it’s therapeutic. 

4. Don’t act as if you blame your friend for being sick; no one deserves illness or asks to get sick.

5. Don’t make a person feel guilty for not being able to be as active as they were in the past.  There is no room for comments like, “I would’ve invited you, but you never show up, anyway.”

6. Try not to make dumb comments.  Think before you speak. 

7. Be supportive.

8.  Show compassion.  It’s just the human thing to do.  And, just think…If you show compassion to others, someone might just show compassion to you when you need it.

9.  If you care, learn about your friend’s illness.  Listen when your friend explains treatments and medications to you, do your own research, ask questions, etc.

Have You Lost Friends Because of Your Arthritis?

Saturday October 23, 2010

It’s hard for your friends to understand exactly what you need, why you seem down, or why you can’t go out today. Because they don’t understand life with arthritis, your friendship can become strained. By strained, I mean, they put pressure on you to do things you can’t do or don’t feel like doing. You get frustrated and they get frustrated.

You may even have a friend who decides that your friendship is unsustainable. Has that happened to you? Have you lost friends because of your arthritis? Share Your Experiences in Have You Lost Friends Because of Your Arthritis?

My response:

I’ve lost a few acquaintances.  And, a few of my relationships have changed; I’m not as close to a few of my friends, anymore.  Unfortunately, when you are dealing with a debilitating illness, a breakdown in communication and understanding is bound to happen.

People want what they want.  Unless they’re going through their own personal hell, many people don’t understand (or don’t care) how constant pain and anxiety associated with a chronic illness will prevent a person from being able to “hang” out.

Yes, I feel a little bad when my relationships head for the border…But, then I have to tell myself that I didn’t ask to get a painful, debilitating disorder.  Therefore, I cannot spend my time stressing over whether or not someone does or doesn’t understand, because they may or may not.  If they do, then I’m glad.  If not, then they’re probably not worth me stressing over anyway.  However, I know it’s not always easy to accept a write off…It can be hurtful.

Well, there were many events that didn’t line up.  The P.A. who did my preadmission testing scared me because he was very concerned about my rapid heart rate–rightfully so.  And, the surgeon never called me back after I called his office several times with questions and concerns. 

Well, my cardiologist cleared me for surgery.  But, my phone calls continued to go unreturned by the surgeon.

So, I got on the computer and found a surgeon at a local hospital in the department of colorectal surgery.  I had wanted a surgeon who specialized in this area in the first place.  I figured it was much better to have someone who worked in this area everyday.  Thank you Lord for leading me to this surgeon.

This surgeon was able to remove what turned out to be a polyp right there in the office.  It was a little uncomfortable.  But, I didn’t need anesthesia or anything.  I haven’t had any pain following the procedure either.  Truly a blessing, because I didn’t have to go through a more invasive surgical procedure!

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Inspiration: This week, I saw Julie Andrews (Mary Poppins, etc.) on The View.  Some time ago, I read an article that mentioned how an operation 14 years ago had affected her vocal chords.  After reading the article, I wondered how Andrews had coped with losing such a beautiful singing  voice. 

Andrews discussed her views about this issue on The View.  She stated that 14 years is a long time so she’s had time to get through the emotions of it all.  She also stated that going through that experience pushed her to venture into writing children’s books and other projects that she normally would not have considered in the past. Andrews is now co-starring in the upcoming movie Tooth Fairy with Duane “The Rock” Johnson.

Many days I wonder what life will be like in the future.  Andrew’s life is a testament that things change and that we are sometimes taken out of our comfort zone in order to fulfill other talents, for example.  I pray that I can look back one day and say, “Yes, illness knocked me out of the teaching game.  Yes, illness caused great pain and discomfort.  But, I see that I went through it for a reason and a season.”   

Today, I responded  to someone’s blog post.  The person discussed how they just did not always feel comfortable in social settings due to the Dystonia.  I wrote a response to the blog post stating that I completely understood where they were coming from because I often feel the same way, too. 

It can be very uncomfortable trying to fight spasms and pain in front of the general population. Others might say,  “No one is looking at you” or “You shouldn’t care what others think.”  Yeah, that’s true and all.  But, when you’re consistently in pain and/or discomfort, none of that matters. 

But, I am so grateful to be able to get on the internet and connect with people who are going through similar issues.  They get it, because they are going through it.  Not to leave anyone out, but it’s a club that you sort of have to belong to in order to understand the dynamics.  Although, it is a club I’d rather not be a part of.  But, I am.  So, I’m glad there are people discussing their physical and emotional issues in dealing with Dystonia and other illnesses. 

Thankfully, due to physical therapy (almost a whole summer) and Botox shots, my neck is much more centered than it was when I was first diagnosed with Cervical Dystonia.  To the naked eye, one might not know the spasms and pain lurking within my neck and sometimes down my back.  On many days, I have an invisible illness; invisible because others many not realize that I have an incurable, neurological disorder because treatment often masks the outward signs of the ailment.  However, I feel the pains and spasms all day and everyday–with some days being better or worse than others. 

While, I’ve never been “outgoing,” I have become a bit more reclusive with the help of Dystonia.  I remember a friend of mine who basically said that I was becoming a bit antisocial.  At first, I was a bit offended and reminded her that I was ill.  But, perhaps she assumes that I’m doing better than I often am because she can’t see the pain.  

I don’t want others to take my being M.I.A., at times, personally.  Of course, I feel bad when I miss out on certain events/activities.  But, more and more, I am learning that I can’t please everyone and can’t worry about doing so.

So, I say to the blogger: I can relate.  I can relate to not wanting to be up in the faces of others on days when I struggle to hold my head up in fight against unrelenting spasms.  I can relate to not wanting to hear uninformed, inappropriate comments from those who have no clue of what I go through on a given day. 

Yes, it’s a club in which members can always relate to each other.  Others may not quite get it.  But, hopefully they’ll love us just the same.

Thankfully, I was able to track down enough pills to last me for a little over a month.  Today, I have been blessed with good customer service when calling around to different pharmacies.  That certainly helps.  

It just saddens me that others like myself have to TRACK down medicine in order to stay healthy and/or alive.  It just doesn’t seem right.  And, I don’t look forward to having to search for more pills when I am about to run out of this batch.  It’s crazy.

But, with that being said, I’m happy that I have enough to last me for a little over a month. 

If anyone is looking for a good business venture, I think the Natural Thyroid Hormone industry might be a place to start (LOL).  Currently, there definitely is not a monopoly on trying to manufacture that medicine.  But, there is enough of a demand–across the nation–to turn a good/decent profit.

When I originally set out to start this particular blog, I intended to focus more on my thoughts about living life in the midst of illness; illness being the center of the writing/blog.  But, it seems that this week, it’s becoming more like a journal (more like illness in the midst of life).  Well, I guess it makes sense because life will and should always be the largest and most important  part of living.  

I could say that I will continue to write my blog, and that I will focus on this or that.  But, I am not a very organized person and have never been able to stick to a true schedule on anything.  The title of this blog is Illness and Life.  So, some days I’ll write more about how illness is affecting my life.  Some days, I’ll talk more about the things that are simply going on in my life.    And, many days, I’ll feel moved to talk about both.  Naturally, it just depends on my day, week, or month.    

I often try to create various schedules.  I try to place my ideas and thoughts into neat, little boxes.  But,  my plans are not always executed because the thoughts or “brain pop-ups”  sway me to do something else. 

Sometimes I wish I could be more rigid and organized, because it is hard not being so organized.  But, then again, it’s interesting to see what pops up in my brain.  I guess that’s called creativity.  Although, I’m not creative in all areas of life.  For example, I’m not so creative when it comes to planning elaborate meals, decorating the house, etc.  Hey, we have all been GIVEN something different.

In the midst of the storm, I reflected on how nice my birthday and the holidays were–I saw a play, spent time with family, etc.

Yesterday, I got a call back from my Endocrinologist.  I had put in for my prescription at the drugstore for Armour Thyroid Hormone.  With knowledge of the widespread shortage of Natural Thyroid Hormone, I knew it was possible they wouldn’t have it.  I have enough to last me for a minute.  But, when the Endo called (I’m not even sure if he said hello), he just started with, “I’m going to put a prescription in for Levoxyl and Cytomel.”  He didn’t even inform me of anything else before he started TELLING me this information.

After he delivered that news, I explained to him that I have had consistent, bad reactions to various Synthetic Thyroid Hormone medications and that I am intolerant to them (all of this info is in my records).  During the conversation, I asked if he prescribes Nature-Throid, an alternative to Armour since Armour isn’t available.  He continuously evaded my question until the end of the conversation. 

Finally, he informed me that he does prescribe all thryoid medications, synthetic and the “natural.”–I put natural in quotes because there are some not-so-natural ingredients in it as well; it is coined to be natural because the main substance in the medicine is from the thyroids of pigs.  Anyway, I was surprised that he prescribes NTH  because a lot of conventional doctors (those working in hospitals, private practices, etc.) will not prescribe this type of medication (that’s a whole ‘nother story).  And, if they do prescribe NTH medications, many doctors don’t prescribe it correctly due to lack of knowledge and lack of carefully addressing and monitoring patients’ symptoms.  Then again, patients being prescribed Synthetic Thyroid Hormone medications are often not being monitored carefully enough either.   Why?  Doctors tend to determine effectiveness based on a blood test and not according to how the patients feels that they are reacting to the medicine. But, that’s a long story.  I go a little more into detail about the more technical stuff on my other blog. 

At the end of the conversation, my doctor did give me a website to look at in my search for replacement meds.  It was nice of him to offer a website, because I know that most mainstream drugstores are not going to have this particular medicine.  I’ve already called several of the drugstores, and they don’t carry the Nature-Throid.  So, I will look online and seek info from online support groups which I follow.

When I got off of the phone with the doctor, my hands were literally shaking.  I knew that I would eventually have a difficult time finding my medicine, because the manufacturers of Armour Thyroid have seemingly stopped production of the medicine.  Naturally, I was upset about being given a shot of reality.  But, emotionally, things would have felt better if there would have been even a hint of empathy or emotion in my doctor’s voice; I needed to hear, “It’s going to be alright” or something.  The doctor doesn’t seem to be a mean person or anything.  But, there just wasn’t…anything there. It’s just who he is.  One might say just switch doctors.  It’s not that simple–this is about the 8th Endocrinolgist I have been under.  Many patients that I have communicated with have been forced to visit quite a few Endocrinologists.  I, like so many other thyroid patients, have gone through hell and many of us are still going through hell because of issues with medication and faulty treatment.

I’m also nervous that I might have a bad reaction to the new medication–just as I’ve had in the past with meds.  But, most of all, I fear that I will be forced back on Synthetic Thyroid Hormone if alternative products keep dropping off the market and if more quality products  are not made to replace them. 

 I know I must give it over to God.  But, I admit that the worry is there.

So, I cried myself to sleep and I woke up the next morning with a new sense of hope.  Let me tell you, anger and frustration really help to get my creativity rolling.  The Lord placed it into my heart and head to increase my efforts in helping to change the way patients who must take Thyroid Hormone Replacement are being treated and medicated.  I’ve written some of my thoughts and ideas at: 

http://chyvonneb.blogspot.com/2010/01/plea-for-assistance-patients-need-help.html.  My goal is to promote positive change!   I’ll keep praying for guidance and favor.

Gratitude Comment:  I am thankful for my mother helping me to call some pharmacies last night;  I am thankful for my husband, mother, and a friend listening to me vent about the situation last night (I got to vent three separate times!); I am grateful that there are so many people who are willing to offer suggestions and advice on what they have gone through (i.e. people in my online health groups).  These people inspire me to keep sharing my story in hopes of helping others to see that they are not alone in this battle…