The Personality of D. Isipidus

I am realizing more and more that the effectiveness of my DDAVP is related to my stress and excitement level. If I have an extremely exciting day, the likely hood is that my medicine will wear out early. If I have something that I am really worried about, my DDAVP will wear out early. If my day goes smoothly without a bunch of excitement then I do fine and my meds. last a normal amount of time. I have decided the reason is that my DI is competing for my attention. :)

When my Birthday rolled around this year, it even wanted to be the very first to wish me a Happy Birthday! Which normally would not be too bad. But in an effort to be the first, it woke me up at 2:00 on my birthday morning. I just had to chuckle. : ) But I had to remind it that a friend of mine had beat it to the first birthday wish the day before. I don't think that made my DI happy because then it woke me up again at 4:00.

It also decided that it had to compete for my attention when I was sick. In order to get the attention it wanted, it ignored the DDAVP. Finally when I gave it a little more DDAVP it calmed down and rested for a while, only to show up later full force. : )

It does like when I give it water, however, it returns the favor by sending me to the restroom just a couple minutes later.

All in all, I have come to a conclusion... My DI has PERSONALITY.

It's Time to go get Blood Work Done

I always get a laugh when I go to get my blood drawn. Here is how it typically goes.

 I walk up to the counter and let them see my lab order and insurance card. Then they bring me back. While the Nurse is getting the supplies, I try to break the awkward silence by asking the nurse a simple question.

Me: "So, how are you doing? Has your day been busy so far?"
Nurse: "I am doing well, and the day has not been very busy. Thank you for asking!"

After this I don't want to distract her as she tries to find a good place to draw blood, plus just saying that much is enough for me any time, and so I am quite unless she asks me a question.

As the nurse examines my left arm for the best vein and finds none that are suitable she asks - "Did you drink a lot of water yesterday?"

Me: "Yes, I think that I drank plenty of water."
Nurse: "How much did you drink? Did you drink about 8 glasses?"
Me: "I really don't know how much I drank, but I am pretty sure I drank plenty of water. However, I have Diabetes Insipidus and take DDAVP and have to be careful how much water I drink."
Nurse: " Well I guess blood pressure medicine would change the volume of your blood, but that is the only medicine that does. Your doctor is wanting to check your electrolytes."

 I knew that my doctor was checking my electrolytes, but I have no clue how that fit in with the blood pressure medicine. I told her, after that comment, that I did not take blood pressure medicine and that DDAVP was the only "medication" - if you can call it that- that I take. She then went on to tell me to drink more water next time. At this point I gave up on explaining and just nodded my head nicely and smiled. :)

I am very thankful that the nurses are always very nice and patient. :)

Today, the nurse had a particularly hard time drawing my blood and ended up having to get it from my hands. She tried my left hand first and found out in the process that the vein was too small for even the butterfly. Then she tried my right hand and managed to get some out.

I get the same "drink more water" discussion just about every time, and it just makes me chuckle inside and think "if she only knew." I told my mom that the next time I go to get blood work done I'm going to bring an article about DI and let them read it and put it with my lab order. Hopefully, if they have that information they will understand that it's not because I don't drink enough water, or that I take some kind of medicine that lowers my blood volume, but it is because of my DI that my blood volume is low.

Perhaps someday they will understand, but until then I get a good laugh every time I go. :)

Two Friends

It's not to uncommon to hear a story about Uncle Arthur (arthritis), and other "illnesses" like that. Well I decided I would write my own little story. Not about Uncle Arthur {I have not met him yet}, but about my two "friends" who have joined my life journey. One is named Insipidus and the other Celiac.

Insipidus joined me about a year and a half ago. It wasn't long after she joined up with me that she started demanding water and completely wearing me out. She kept me up at night requiring that I pay her some attention. She is what you would call very dependent.

Insipidus finally wore me out so much that we brought her to the doctors attention and the doctor prescribed Desmopressin to keep her in check. Since being treated with Desmopressin she is a lot less dependent, only showing up in the mornings and evenings and occasionally in an afternoon. But her and I have learned to coexist. And we get along pretty well.

Then about a year after Insipidus showed up, she invited a friend to join her. I guess she got lonely and decided she needed someone else to help keep her company. Her friend is named Celiac. Celiac is very temperamental and a very very picky eater. Insipidus did not insist on any special diet but Celiac sure did!

When Celiac first showed up I started realizing that almost everything I ate was upsetting her. Then I realized it was all the gluten that is hidden in tons of things that was bothering her. Once I cut gluten out of my diet Celiac became very happy. However if I accidentally have anything that contains even a small trace of gluten, Celiac gets really upset and living with her for the next couple weeks is not fun.

Despite some challenges, we've all learned to live together.

One of my friends on Facebook found this article and posted it in my DI support group and I thought that I would share it with all of you. I thought that it was very informative and covered all the bases.

  Here is the link.  http://www.medicalnewstoday.com/articles/183251.php#.

Enjoy!

My symptoms before diagnosed:

• Extreem thirst (I drank 3.5+ gallons of ICE COLD water a day)
• Polyuria (running to the restroom every 15-30 minutes all day)
• Nocturia (every 15 minutes - 2 hours)
• Orthostatic Hypotension (as well as a general feeling of being very lightheaded all the time)
• Tremors
• Cold hands and feet
• Dry skin
• Lack of ability to produce tears
• Extreem fatigue
• a general feeling of being unwell
• And I have to admit to being irritable at times. :) 

My first endocrinologist thought that my thirst is what caused my polyuria and so he told us.... "Its just like the chicken and egg paradox - which came first the chicken or the egg, except we were dealing with - which came first  the extreme thirst or the extreme urination?" We did not fully know the answer to that paradox until I started taking DDAVP. Now, we know that the thirst comes after I have already dumped for about an hour. 

I can't imagine life without DDAVP. 

Pets

I don't know about all of my readers, but I am an animal lover. My family has two cats, a dog, and a rabbit, (I have included pictures of three of my pets at the end of this post) all of which are very loved and doddled over. Today's post is for all those animal lovers out there. I decided to do some looking and find out about some animals that have DI. I found out about a couple that I have provided links to the web-sights where you can read about them if you are interested. 

The first link I will share is about a dog named Tigger. It looks as if this story was from 1998. http://brindleweb.com/pets/tigdi.html

If you want to see a picture of the dog click on this link  http://brindleweb.com/pets/tigger.php

The next link will bring you to a web-sight that shares a couple different pet stories. http://www.petdiabetes.com/pdorg/diabetes_insipidus.htm#Ziggy

Again I hope that you enjoy these!!

Below is my cat Dusty

 

My cat Princess (most often called Prissy - because she is prissy) 

And my dog Precious (sorry that it's not the best quality of picture)

Introversion vs. Extroversion: Which one am I and which one are you?

It all began this past semester with a wonderful Economics teacher and a wonderful Psychology teacher. Believe it or not, this semester was the first time that I really got interested in unveiling the truth about extroversion and introversion. Which was I? What exactly is an introvert vs. an extrovert?

I began my quest to discovery by visiting the dictionary. According to the American Heritage Dictionary of the English Language, Introvert means “to turn or direct inward.” Introversion was given the psychology definition of “the direction of or tendency to direct one's thoughts and feelings toward oneself.” And last but not least, Introverted was defined as follows: "Marked by interest in or preoccupation with oneself or one's own thoughts as opposed to others or the environment; shy or reserved."

According to those definitions an introvert would appear to be selfish (focused on oneself) and shy. However I was not completely satisfied with that answer. Surely there was more to it than that. And I was not ready to call an introvert selfish.

So, I decided to try to google introvert. And this is the next definition I came up with: "A shy, reticent, and typically self-centered person. A person predominantly concerned with their own thoughts and feelings rather than with external things."

Okay so both references called an introvert shy and self-centered. I still was not satisfied with that definition. I still would not call a introvert self-centered. I found a better explanation of introversion in the book written by Susan Cain which I will talk more about later. But for now..... what about extroverts?

According to the American Heritage Dictionary of the English Language, Extroversion is “Interest in or behavior directed toward others or one's environment rather than oneself.” “Gregarious and outgoing” was added to the definition of extroverted.

Well, now it was time for the most interesting part. I decided to do a quiz online and see which I was and how exactly psychologists were defining these terms.

So, again I googled and found a quiz that was based on a book by Susan Cain’s book “Quiet: the Power of Introverts in a World That Can’t Stop Talking.” I answered all but one True and that is a pretty good indication that I am an introvert. I tended to agree with her prognosis. Here is the link to Susan Cain’s Introvert Quiz - http://www.thepowerofintroverts.com/quiet-quiz-are-you-an-introvert - I encourage you to find out what you are and then comment on my blog and let me know what you discover. You will also find her explanation of the terms a whole lot more helpful and accurate than the dictionary definitions. She draws a distinction between being shy and being an introvert. I found it really interesting that they were not actually the same thing.

Anyway, another article you may find interesting can be found at this link - http://flokka.com/you/understanding-personality-types-extrovert-or-introvert .

Although this topic has virtually nothing to do with Diabetes Insipidus, I think that my DI has made my introversion and need for some alone time greater.

What about you? Are you an introvert, extrovert, or ambivert? Please comment below when you find out.

For those of you with DI, has your DI strengthened your introversion or extroversion?

Values and Insights

Some time ago, I was asked “What values or insights have you gained from having DI?" I am sure that by now the person who asked me is wondering if I will ever get to their question. To tell you the truth I have been putting this question on the back burner because I was not quite sure what all to tell. I have learned a lot of things through all of my health struggle with DI. So, I decided to make answering this question a little less daunting and a little more readable for all of you by giving three general things. J

Here is the long awaited answer.

Insights from having DI

This may seem like a very small insight but since struggling with DI I have a very hard time saying “please wait.” to any of my little Sunday school kidos who ask to get a drink or go use the restroom. I guess this is because I know what it feels like to have an urgent call to the bathroom and to be thirsty.  Thankfully, all my little kidos are very good and do not take advantage of my extra sensitiveness in that area. I do tell some to wait if class is just about over. J

Another thing that has changed is that I am a bit more sensitive to people who are hurting. I want to help them and that is part of the reason why I am hoping to get into Nursing in about a year. 

On a spiritual note, it has definitely taught me a lot about my Savior. It took me a long time, during that time before I was diagnosed, to finally realize that God uses our suffering to draw others to Him. When I realized this very important truth things began to change in my heart. I realized that my health struggle was all part of God’s wonderful plan for my life, and that it would give me unique opportunities to be a witness to some people who I otherwise would not have come in contact with.  I also came to realize how much I needed Christ for my daily strength and help. I can’t imagine going through what I have in the last year  without my loving heavenly Father.

Do you know my Heavenly Father? Do you have an intimate relationship with Him? Have you ever called upon him and asked him to forgive you for your sins and to come into your heart?

God’s word says  that “All have sinned and come short of the glory of God.” – Romans 3:23 – we are all sinners.

       In fact, God tells us in James 2:10 that “whosoever shall keep the whole law, and yet offend in one point, he is guilty of all.” – this means that if you have only sinned once (told a lie, lusted, stolen, envied, ect.) you are as guilty in God’s eyes as if you had committed all of the sins.

God goes on to tell us that a penalty must be paid for our sins - “For the wages of sin is death” (Romans 6:23a) – this means that because of sin (whether it be one “small” sin or many “big” ones – there is no difference in God’s eyes) the penalty is eternity in Hell - eternal separation from God.

But God offers hope to us in that same verse. The whole verse says “for the wages of sin is death, but the gift of God is eternal life through Jesus Christ our Lord.” – Christ offers us a free gift of Salvation.

This is an offer for forgiveness of our sins and for spending an eternity in heaven. “For God so loved the world, that he gave his only begotten son, that whosoever believeth in him should not perish but have everlasting life” (John 3:16)

God loved you so much that he provided, through the death, burial, and resurrection of his Son – Jesus Christ, salvation free to any who believe and confess.

How do you accept this free gift of salvation?

 Romans 10:9  “That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved.”

It’s simple. Believe that Christ died, was buried, and rose again for your sins, confess to God that you are a sinner and need His forgiveness, and ask Him to become your Savior (to save you from the penalty of your sin).

Christ promises that “whosoever shall call upon the name of the Lord shall be saved.” Romans 10:13

If you have any questions please do not be afraid to ask. If you read this and come to know Christ as your Savior I would love to hear from you! You can leave a comment or you can contact me at hmhsunshine042@gmail.com.

Answers to a Puzzling Question

So, I decided for this post that I would do a question answer format. I was not sure what questions my readers might have.So, I asked some of them and here are my answers to the first question that I recieved. I hope that you find it helpful! And feel free to ask me any further questions that you have. 

 The first question posed was: "What is the easiest and shortest way to describe DI to someone?" 
    Answer: I have found that it depends a lot on the situation surrounding the question, and have also found that there are numerous ways to describe and define Diabetes Insipidus. I will only give a couple examples, and may give more in later posts. 

A.  If asked in passing I do not go into the specifics of DI. Most of the time the simplest way to explain it is to say,

•  "The doctors found out that I have a hormone deficiency that causes my body to dehydrate itself. The doctors have put me on a hormone replacement that regulates how my body uses water."

   
B.  If the person has more time and wants a more detailed description, I would tell them that

•  "I have a form of Diabetes Insipidus that is cause by my body not producing enough of a hormone called Vasopressin. Basically,Vasopressin controls how the body uses water (although it does a lot more than that). I take a hormone replacement, DDAVP, and without it my body will dehydrate itself." 

 C.  If they do not understand, are still interested, and want to know more I sometimes will continue with information as follows: (This explanation is assuming that they know what type 1 Diabetes is. But be careful. This explanation will either cause greater confusion or will prove very helpful in understanding what DI is. In short, use this with caution. Also be aware that this explanation can help people understand that Diabetes Insipidus ,although similar in some aspects, is NOT Diabetes Mellitus) 

•  "Type 1 Diabetes is caused when the body does not produce enough - if any- of the hormone Insulin and is treated with Insulin injected and blood sugar (glucose) levels being closely monitored. Similarly, in Central Diabetes Insipidus the body does not produce enough of the hormone Vasopressin and must be treated with a hormone replacement called DDAVP with sodium levels being monitored (although this has to be done through blood work - there is no sodium monitor available). In short, Diabetes Insipidus has to do with sodium levels and the hormone Vasopressin, and Type 1 Diabetes has to do with blood sugar (glucose) levels and the hormone Insulin. Neither of them can be avoided or cured."

In my next post I will answer the second question that I received,  "What values or insights have you gained from having DI?"

Tattoo Tracks Sodium via an iPhone

Instead of having to check my blood sugar, I have to have monthly blood work done to keep tabs on my sodium levels. A while back I was browsing around the internet to see if there was any such thing as a sodium monitor and I ran across this article:  Tattoo Tracks Sodium and Glucose via an iPhone | MIT Technology Review

I actually got in contact with the lead scientist that is heading up this research and shared my story with her. Here is part of her reply to my e-mail: "Thank you so much for your email.... I am glad you reached out because we are particularly interested in the potential for the technology to help people struggling with Diabetes Insipidus. Emails like yours help us understand (and convince others) the critical need."

When I e-mailed her I was not exactly expecting a reply but was quite pleased to hear back from her. 

She also encouraged me to follow their progress at this link: www.neu.edu/nanosensors

The Other Kind of Diabetic Hand

The cause of my Diabetes Insipidus is unknown. Therefore, I have Idiopathic Central Diabetes Insipidus. Central Diabetes Insipidus is caused when the body does not produce enough (if any) of the hormone Vasopressin (a hormone secreted from the Pituitary gland in the brain). Vasopressin affects how the kidneys filter and use water. In simple words, my body was dehydrating itself. ALL water that went in also went out – plus some.

Note: Diabetes Insipidus has nothing to do with the hormone Insulin, there is no cure for DI, and really no way to prevent it. It is something that I will live with the rest of my life.

A hormone replacement called DDAVP is used to treat Central Diabetes Insipidus. Although DDAVP can be taken through injection, it is also available in several other forms. I take the generic pill form called Desmopressin. I sometimes refer to it as my Desmo. It is my ever faithful companion. It goes everywhere with me!!!!  If my medication wears out I am in need of a bathroom, water, and more Desmo.

Because my body dumps so much during periods when my medicine is not in, I sometimes have a hard time keeping enough fluids in me. So, I get dehydrated which causes my skin to start getting dry, chapped, and eventually bleed. The skin on my hands is what is often the most effected. Thus, resulting in what I call DI hands or the other kind of Diabetic hand.  

2 Corinthians 12:9  

And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.

The Long Road to a Diagnosis

Fall of 2011 was the beginning of my college carrier. Little did I know that it was also the beginning of my health problems. Barely into my first semester, I was pouring over my books one evening when I realized that my hands were shaking like crazy. I had no clue what was going on with me, but I did know that no matter what it was I had some meetings I had to attend. By the time I went to my first meeting my whole body was shaking as if I had a very high fever. I was very cold, my cheeks were burning and red, and I felt horrid.

My sister asked our Prayer group leader what we should do and they took me to the dorm nurse. The nurse took my temperature and it was fine. After putting me to bed, the nurse asked if I had blood sugar problems. My sister told her “no” and the nurse told me to drink some juice and go to bed.

That was just the beginning of everything! Throughout that first semester I had occasions off and on where I was a little shaky but none where as bad as that first time and I sloughed them off as no big deal. Then, over Christmas break things got worse.

My second semester of college is when I finally had to tell my parents.  I should have told my parents earlier, but I still wanted to believe that nothing was going wrong. My symptoms included : tremors, lightheadedness, fatigue, blurred vision,  extreme thirst, excessive urination, slight headaches, almost passing out a couple of times, flushing of the face, extremely dry skin,  foggy brain, occasionally even slurred speech, and by midsummer tears where non-existent half the time. 

Several of my friends observed what was going on and asked if it was low blood sugar. This got me to wondering. So, I purchased a glucose monitor and decided I would see for myself. The first time I checked it I was at 75, but I was having all the symptoms of hypoglycemia.

One day, I was sitting in a noon class and my hands started shaking, I started feeling awful, and got very anxious. During that class period, all that I could think about was getting out of that room and somewhere to get something to eat. When food did not help I went to a friend’s office who had Type 1 Diabetes. She gave me something to try to get my blood sugar up. When the shaking finally wore down enough that I could check, the glucose monitor said that I should have been fine. However, that whole afternoon was awful!  What was going on?? That was the incident that scared me into telling my parents what was going on.

My parents got a doctor’s visit for me and of course the first thing the doctor checked for was Diabetes Mellitus. When that test came back perfectly normal, my doctor referred me to an endocrinologist and got an appointment set for not long after school got out. Summer finally came after what seemed like an eternity. My first Endocrinologist visit ended with the doctor ordering a whole battery of tests done to check for hypoglycemia and a myriad of other things that might be causing the symptoms.  After most of the tests came back perfectly normal, I was distraught, but there was one more test that the endocrinologist wanted to do to check for sure that my glucose levels were okay.

A couple of days after the final test I needed to get alone, as I had several times before, to just talk things over with the Lord. I went to a spot that was secluded and just poured my heart out to the Lord. I asked him what his purpose was in all this. I remember asking the Lord over and over again why he could not have just given me diabetes because at least that would have been easy to diagnose and could have been treated.

I knew that if I did have diabetes that I would live with it the rest of my life. However, in my mind having something diagnosed that could be treated would be better than living with something that no one could figure out and could not be treated. I begged him to let the endocrinologist find something.

As I poured my heart out to the Lord, I cried and no tears would fall. It was awkward crying without the relief of tears flowing down the cheeks. I remember saying to the Lord “Lord, I need relief from crying! Why won’t you just let me cry? Why will tears not fall? Why can’t I cry? “ My conversation that day with the Lord started out rather angry but ended on a slightly better note. I thanked God for what he was doing and asked that somehow, someway He would just use this all for His glory and for my good. I begged him to draw me closer to his side through this whole thing and again I asked him to please help the doctors to find the problem.

That same day I went home and got on the computer to try out a symptom checker. I plugged in my symptoms, as I had done several times before, but this time along with all the normal stuff that always came up was something I had never heard of before. Something called Diabetes Insipidus. After checking it out, everything seemed to match up!

After measuring my water intake, I found out that I was drinking 3.5+ gallons of water and was going to the restroom over 24 times within a 24 hour time frame. My mom told me that I needed to ask the doctor about DI at the appointment and needed to tell him what I found out about my water intake and output.

The day came to go back to the endocrinologist, he seemed very determined that there was nothing wrong with me and showed us that my insulin levels were perfectly normal. I was fine in his eyes, and there was no need to go any further.  While at the follow up visit my mom had me tell the doctor everything that I had found out.  The endocrinologist restlessly listened to what I had to say. He acted like he did not believe me at all. And when we asked him about Diabtetes Insipidus he was not very pleased and did not seem to think that that was the problem. But my mom convinced him to check it out. At first he said that the only way to see if I had it or not was to go through a water deprivation test and to do that I would have to go to the hospital. But then he excused himself from the room and came back with a paper of different tests that he wanted run. He wanted them done as soon as possible.

We decided we would do the test on Friday morning. I was not supposed to drink anything from 10 in the evening till after the test- that was awful!!!! We went in to the lab Friday and I had the test done.  Just a few hours later the endocrinologist called back and told us that I was unable to concentrate my urine (no, huge surprise here). He then proceeded to tell us that I needed to have the water deprivation test as soon as possible. Basically to verify that I had DI and to determine what type I had and how to treat it. So my test was then scheduled for the following Monday. The doctor did tell us that it would not be a pleasant test and would be risky.

 

The night before the test I challenged the Lord. I told him that if the test results came back normal I would hate him forever! Well, the test came and went and the results came back normal. I was very angry at the Lord!!! However, the Lord did not allow that very long.

 It was the week of VBS at our small little church and they needed help with all the kids. So, I went to help out. That week between listening to the children quoting Bible verses and watching souls come to Christ, God got a hold of my heart and showed me that He had a reason for what he was doing. After that I began to read more in my Bible and God began to do a work in my heart. I began to realize that God had a purpose for what He was doing even if I could not see it at this point. I would like to say that after this point I never doubted that God’s way was perfect but that would not be the truth. I still had my ups and downs, but God always brought me back and showed me that He was with me – in fact this was one of those times when he was carrying me.

Anyway, it wasn’t long and we were back in my family physicians office, pretty much back where we had started. This time, my doctor wanted to send me to a Christian counselor, he said that there did not appear to be anything wrong with me physically and that sometimes the symptoms that I was having could be caused by a spiritual problem. Well, my parents were not too happy about that, and pushed to get my doctor to send a referral to another endocrinologist. My parents were confident that it was not all in my head. Although, I have to say by this point I really did not know, and was even test shy because all the tests were coming back normal. I was afraid that we would go to this new endocrinologist and get the same response that we did everywhere else.

But we did not. The new endocrinologist agreed to do another water deprivation test. He also ordered a 24 hour urine sample, a lot of blood work, a MRI, and a scan of my kidneys and bladder. I filled two and a half of the big jugs that they give you to collect your urine in and completely shocked the people at the lab. They had never seen anyone come in with that many filled in a 24 hour period (normally a person will not even completely fill one).

The time came for the water deprivation test. That was a hard day, but God was good and I was at peace the whole time. At the end of the test they injected DDAVP and even thought that whole day had been awful after the DDAVP kicked in and I got a little bit of water I felt better than I had felt in a long time!

The day after the water deprivation test, we had an appointment with a Nephrologist and with my Endocrinologist. The Nephrologist said that I did not have Nephrogenic Diabetes Insipidus and that the results seemed to indicate that I was okay. When we went to see my Endocrinologist he said that the results did come back basically normal, so far, but that he would go ahead and let me try DDAVP and see if that helped (at this point all the blood work from the water deprivation test where not in).

A couple weeks later we got the results back from the test. The results were right on the border line, and it was debatable by looking at the test results whether I had Diabetes Insipidus or not. But after several months of being on DDAVP and it helping tremendously, the diagnosis of Diabetes Insipidus was finally given.