Insulin Neuritis: My Experience

I thought that it would be a good idea to share my experience with Insulin Neuritis as there really is not a lot of information out there with respect to this.  When I began to suffer with this rare condition I searched endlessly for stories of people experiencing the same thing I was, mostly for comfort and reassurance.  I really was surprised at the lack of info out there.  So here is my story.

I was diagnosed Type 1 diabetic on September 7, 2011.  On diagnosis my sugars were hovering around the 38 mark and my A1C was 16% (off the charts according to my Endo).  Looking back I think that I went undiagnosed for at least 18 months, perhaps longer.  Going for so long undiagnosed resulted in the issues I have had with my eyes and teeth (that is another story altogether).  Unfortunately I also have suffered with this rare condition Insulin Neuritis.  

About two weeks after I was diagnosed I began to notice what I can only describe as "buzzing" in my feet. It was not painful but very annoying.  By the time I attended my diabetic education classes in October, 2011 the "buzzing" had progressed to some burning and pins and needles.  I spoke with the nurse about it after class and she said that this can be quite normal and that it should go away within a couple of weeks.  I left feeling assured that it was temporary, I was not too concerned.  Over the next four weeks things got worse, fast!  The burning was soon accompanied by stabbing pains through both feet and up my legs. It felt like someone was shocking me.  I could be sitting and would repeatedly be plagued with these pains.  By the end of October, 2011 I was in a living hell, literally.  I was experiencing the most unbelievable pain 24 hours a day.  Nothing would ease it. By then I had been to my doctor half a dozen times and she had started me on Neurontin (Gabapentin) which was used for nerve pain as well as a cocktail of T3's and Percocet.  She had me taking 2 Percocet every 4 hours and it did nothing to ease the pain.  I was getting on average 4 hours of broken sleep a night and was extremely exhausted and very emotional.  I tried for a while to do some work from home but by mid-November had given in and went on short term disability.  It became difficult to walk and the pain got even worse if travelling in a car, standing for more than a few seconds or wearing socks and shoes.  In fact it was painful for anything to touch my feet, whether it be my sheets or even a breeze of air.  My doctor had referred me to a neurologist right away and I got in to see him at the end of November, 2012.  By this time I was a total wreck.  I was not sleeping and was in agony all of the time.  The pain was the worst in my feet however had travelled up my legs, into my arms and hands and was even in my ribs and breasts. I had noticed some time ago that the hair on my feet had stopped growing and now that my sugars were regulated the hair began to grow back.  I swear that I felt every single one of those things grow.  My diabetic nurse told me about an ointment for nerve pain called Neuralgia and I went out and bought it right away. It was $35 for a small bottle but I was willing to try anything.

The neurologist really was amazing.  He was very thorough and very reassuring.  He confirmed that I had no permanent nerve damage however it was likely I would suffer for the rest of my life with flare-ups of neuropathy.  He advised that the current state I was in was due to having my sugars dropped from a very high level to a normal level in a very short period of time.  He explained that since I had gone undiagnosed for what was a very long time, my blood had become thick with sugar and my nerves had gone into "hibernation".  He said that once my blood sugars had been normalized, the nerves in my body had awoken and were in the process of regenerating themselves.  He said that the process of regeneration is a long process and extremely painful.  If the nerves had suffered damage they would die off quickly and I would be numb, not in pain.  He assured me that things would gradually get better over time and that hopefully within 12 months I should not experience many symptoms at all.  He felt that the Neurontin I was on would help and he upped my dosage significantly. He also gave me a prescription for Amitriptyline which he said would help with the burning pain and also a prescription for sleeping pills.  I left his office feeling somewhat more optimistic.

My boyfriend Ryan and I had registered the previous May to go to Vegas with me running the full marathon and him the half.  I had to cancel the marathon and was so upset. I felt like my life was crumbling around me.  The sleeping pills helped somewhat and I began to get around 6 hours of sleep at night. The medication did start to kick in and I was getting spells of relief.  I found that if I kept my feet ice cold it helped ease the pain.  I did not really leave my house so I kept frozen packs to use on my feet.  At night I would get up six to eight times a night to soak them in cold water or apply the ice.  I spent my days on the couch with my feet up.  I can honestly say that it was the lowest point in my life.  I was still reeling from being diagnosed with diabetes, had two eye surgeries to remove cataracts and was now in the most pain I could imagine.  Ryan and I decided that although I could not run in Vegas we would still go, I needed to get out of the house.  The plane ride was difficult as my feet hurt a lot, but I am glad that we went.  I wore sandals everywhere and spent a lot of time with my feet up.  For the first time in a long time I started to laugh again!  I did have some very frustrating moments, particularly at night, and cried many, many a tear alone in the bathroom. 

Slowly things began improving and I no longer had to apply the ointment every day.  By January, 2012 I was able to go for some walks and had a couple of pain free hours a day.  I had to continue icing my feet regularly and could not wear closed toe shoes.  I returned to work part-time on February 6, 2012 and had my trusty ice packs at work to get me through.  Work was very understanding and accommodating and they even got me a fancy foot stool for under my desks.  As time went on I noticed that I did not have to ice my feet as much and was sleeping better and better. At the end of February, 2012 I returned to full-time work and started to try and run again.  I cried the first time I did a 5km run with relatively no pain.  I began to see a Naturopathic Doctor and they put me on a regimen of different vitamins to help my nerves heal.  I also had 6 acupuncture treatments and can honestly say that they helped.

It is now almost June, 2012 and I am happy to say that things are so much better now.  I have been able to wean off the Neurontin and am down to 600mgs a day from 2,800mg.  I really have not enjoyed being on the Neurontin as it resulted in unwanted weight gain and terrible acne. I still take the Amitriptyline as it keeps the burning at bay.  I do suffer with some burning each day but can deal with it.  On the bad days I keep them as cold as I can. I still wear sandals everywhere I go to keep my feet cool.  I plan on sticking with my vitamin regimen and can honestly say that exercise helps.  The doctors cannot guarantee that I will ever go back to how I was, but compared to where I was not long ago I am a happy camper!  I cannot help but wonder what would have happened if they would have brought my sugars down slowly instead of rapidly.  Would I have suffered with this debilitating condition?  I get angry but have to remind myself that what is done is done, there is nothing I can do to change it.  I feel like I went from being the lowest I have ever been to almost my old self.  And for that I am thankful!!

D-Blog Week: Day 7 - Diabetes Hero

I do have a diabetes hero - it was an easy question to answer.  He does not have the disease but has been my strength and support since I was diagnosed nearly 9 months ago.  He is my boyfriend Ryan.  We had been dating for over a year when I was diagnosed.  He was the first person I went to when I left my doctors office in shock and held me close as I broke down.  He took me to the emergency room, stayed with me while they hooked me up to all kinds of machines, brought me some food when I was starving and they would not let me eat (bad on my part, but I was hungry!!).  He went to my house and brought me everything I needed for my hospital stay and more.  He took care of my two dogs and visited me everyday.  When I was discharged he stayed with me at my place and made sure I was okay. He attended my diabetes education classes with me.  When I was unable to drive because of my eyes and then my feet, he drove me everywhere I needed to go - endless appointments!  When I had to have eye surgery he took me and was there when I came out of recovery.  When the nerve pain in my feet and legs got to the point where I could hardly walk he stayed by my side and let me lean on him.  He has brought me juice and held my hand during my lows.  Since diagnosis he has dried many, many tears and made me laugh when I was sure I would not laugh again.  He encouraged me to learn everything I can and to get back to the sports I love once I was able.  He pushes me when needed but never nags.  He has been there every step of the way and has not blinked an eye.  I don't know how I can ever thank him enough for all he has done and continues to do.  He truly is my diabetes hero!

D-Blog Week: Day 6 - Saturday Snapshots

I went camping for the weekend with my boyfriend and it was fantastic.  The weather was nice and it was good to get out of the city.  We biked, walked, fished, relaxed, napped, ate and played a lot of cards.  All weekend my blood sugars were perfect - I mean perfect!  Maybe it was because I had no stress...was active all weekend...not sure but it was wonderful.  On Monday we packed up and I had a good lunch.  I was conservative on my insulin as we had gone for a hard bike ride and also due to the energy used to pack up.  I checked my blood sugar an hour from home, about three hours after we had eaten, and it was a perfect 5.7.  Got home safely and boom.  Out of nowhere came a bad low, the lowest I have had that I know of.  I felt like garbage and it scared the crap out of me. After such a good weekend with great numbers, diabetes came and knocked on my door to remind me it was still there and was still unpredictable!

D-Blog Week: Day 5 - What They Should Know

I think I could think of about a hundred things I wish people knew about this disease.  I am fairly newly diagnosed (8 months ago) and I am amazed at the comments I get from people, people I know and a lot that I don't.  I really want to learn as much as I can about diabetes so that I can educate others as well.  My list of top things I wish people knew:

1.  I did not get diabetes from eating too much sugar. 

2.  No I cannot be cured from exercising and eating well.  If that was the case I would not have even gotten it as I have always exercised and eaten well.

3.  Without my insulin I would die, plain fact.

4.  Yes I can eat what I like, however I need to know how much insulin I need to take to cover it.  Please don't look at me disapprovingly when I reach for anything other than broccoli. Oh, and I cannot eat that bread or pasta because I also have celiac disease.

5.  It is not just a matter of a few needles a day and off you go.  It is a very fine balancing act and requires a lot of attention.

6.  There are two Types of diabetes, Type 1 being very different from Type 2.

7.  Yes I do think it is okay to test my blood sugars and inject insulin in public.  I don't expect you to eat in the bathroom so why should I take care of my disease like I am ashamed of it.

8.  Exercising with diabetes is a very fine balancing act and is frustrating beyond belief.

9.  No you cannot catch diabetes from being around me (someone I work with actually asked me that).

10.  Having diabetes is just goddamn hard.  It is a full-time job and you never get a break.  It can be extremely frustrating and inconvenient.  Having low blood sugars can be very scary and until you experience one you cannot really understand how it feels. Having high blood sugars makes you feel sick and also like you are failing yourself.  It is emotionally difficult as well as physically difficult.  It really, really sucks.

Today's picture is one of my boyfriend and I on vacation last year.  He is truly amazing and makes me smile everyday!

D-Blog Week: Day 4 - Fantasy Device

I love this topic!  I can think of a ton of cool diabetes gadgets I would like, most of them involving sweet stuff like lasers and mind reading capabilities.  Of course my dream gadget would be a working pancreas, but alas it is not to be.  

The most realistic fantasy device I would like to see is something that can read the carbs in your food automatically.  I am thinking that it would be an app that could be downloaded on your phone, or maybe is incorporated in your meter or pump.  Basically you would have the food in front of you, whether it be a meal or something at the store, and with a quick scan, information would immediately be given to you on the carb content.  Kind of like when you go to the self checkout at the grocery store and scan your items...only much smaller and no noise (and way cooler!).  I would love not to have to read every label, do research on the carb content of foods when eating out and it would make cooking things like soup at home much easier.  One swipe and it would automatically let you know the carbs and away you go.  Could help to avoid the highs and lows when trying to guestimate!

Today's picture is one that my brother photoshopped of my head on Usain's Bolt's body.  And he put it in my office Christmas Party slideshow!  Makes me giggle everytime I see it.

D-Blog Week: Day 3 - One Thing to Improve

Holy moly (wow did I just say that?), one thing to improve on.  I can actually come up with a whole bunch of things I need to improve on diabetes wise and I think this will be true for a lifetime.  I have learned that this disease is pretty unpredictable so will require a lot of hard work forever.  

However if I think of one thing I would like to improve on at this time to make things run smoother, it would have to be balancing my insulin and food intake before and after exercise.  I am on MDI right now and am finding this a struggle.  When I exercise I like to go for it.  I crave the challenge and discipline and don't like to do things half-assed.  I love to run, really and truly love it.  When I was diagnosed the first thing I thought was "how will this effect my running?".  Then I suffered with the terrible pain in my feet and legs and was unable to run for 6 months - it was torture.  As soon as I could stand to wear my shoes I started to run again (as well as swim, bike, box and weight lift).  I realized right away that it was going to be a challenge as my blood sugars tanked during my first 8km run.  

Since getting back to exercise I have started to notice different trends with different exercises.  My blood sugars stay relatively stable during an hour swim, when lifting weights and during yoga.  For boxing as long as I start with a blood sugar hovering around 9.0, I can finish my hours class in the clear.  Running is a whole different story.  It is very unpredictable.  Sometimes I can leave the house with a blood sugar hovering around 10 and come home after 10km with a nice 5.0.  These are the great days!  Then I have days like yesterday for example.  I took two units less with my lunch in anticipation of my run and before I set off for 11km I was at 11.3, a bit on the higher side.  I ran for just over an hour and when I got home I knew I was low right away.  Tested and yup, 3.1.  Not sure why.  I do carry dextrose in my sports bra and carry a phone with my credit card just in case.  I never feel the lows during my runs which is not good.  I have to learn to test partway through and treat if necessary, even if it showing a downward trend.  I have to learn what is the best to eat before and also after as I tend to go high about an hour after running and then can go low hours later, like in the middle of the night. Needless to say I am an experiment of one.

So to summarize - I need to track my workouts, what is eaten before, what my sugars are before, during and after and try to fine tune my routine.  I really want to get back to the longer distances and know I have to work on this before I can.  My goal is to be training for another marathon by next year so I will continue to experiment and work with my diabetes team!  I hope that one day, sooner rather than later, I will be able to get a pump (very expensive here in good old Alberta!).  I think this will help me and my goal.

To keep with the theme of running, today's picture is one of me running.  It was my fourth marathon in Winnipeg Manitoba and where I got my current PB of 3 hours 48 minutes.  This picture is about 1.5km from the finish and I was determined to get under 3 hours 50.

D-Blog Week: Day 2 - One Great Thing

I have been thinking about this topic for a while now and it is harder than expected.  I was only diagnosed 8 months ago and am learning so much every day about managing this disease.  I expect that will continue every day forever!  There are some things I am pretty good at.  I am good at checking my blood sugars often, I always have things on hand to treat lows, I eat incredibly healthy and exercise everyday. But these are things I am pretty good at, not great at.  There is always room for improvement!

I asked my best friend what she thought I was great at when it comes to my diabetes.  Without a pause she said that I am great at being positive and determined....and I think she is right.  Don't get me wrong, I have cried with the best of them, I have stomped my feet and thrown my hands in the air in despair.  However most of the time I keep my chin up.  I know that there is nothing I can do about having this disease, so each day I vow to respect it and do whatever I can to manage it.  I remind myself often that things could be much worse - I could live somewhere where I would not have the access to the medical supplies I have, the education and support system.  I can still run, swim, bike, play with my nieces and nephews, I can work and I can laugh a lot.  In fact I am more determined than ever to enjoy my life and be the best I can be (wow that sounded like some sort of commercial for the army).  I guess I have always been a glass half full type of gal and having diabetes has not changed that.

So yes, that is what I am good at.  Keeping positive and very determined!

Here is my picture of the day that makes me smile.  I went to Mexico two years ago with my brother, his wife and my darling nephew Logan (he was one in this picture).  I had just come through a really bad year with the break-up of my marriage and on this holiday I learned to love life again.  

D-Blog Week: Day 1 - Find a Friend

I have not been blogging for very long and am very excited to participate in my very first D-Blog Week.  Thanks to Karen of Bitter-Sweet for organizing this!  I don't really have any followers, but nonetheless I see it as a daily challenge and I am a girl who likes challenges!  Today's topic is Find a Friend.  I have been a blog reader for a long time and only just recently a D-Blog reader (never thought about reading diabetic blogs before having diabetes).  Here is a list of some blogs I am currently reading:

The Iron You 

Since I am very passionate about fitness, food and healthy lifestyles I love this blog!  It is very informative and I have gotten some great ideas for training and recipes from this blog.  I love to run, swim and bike and this blog inspires me to consider getting more into triathlons and maybe, just maybe, one day fulfill my dream of completing an Ironman.

six until me 

This was the first D-blog I came across and another one I follow daily.  I love Kerri's passion for life and her sense of humour.  She has me laughing out loud often and I have learned a heck of a lot from her blog.  She is a great advocate for diabetes awareness!

Canadian D-gal

I happened upon Scully's blog when searching for other Canadian diabetic bloggers.  Hers caught my eye and I am glad that it did!  I have gone back and read all of her posts and they have made me laugh so hard and cry as well.  I feel I can really relate to her lifestyle and some of the struggles she describes.  Her passion for sport inspires me and has made me really believe that I can do anything even though I have diabetes.

Diabetes and Celiac Sunshine

I found the link for Nikki's blog when on Scully's.  I have to say that I was excited to find another blog written by someone that not only had diabetes, but celiac disease as well.  Being new to both conditions has left me, quite frankly, scared.  From reading this blog I am learning that life can be "normal" and just takes some extra effort.  I have already used some of her recipes and ideas in the kitchen.  Also, her positivety makes me smile!

I have been reading many other blogs, but so far these are the ones that stick out.  Daily I find new blogs to read and look forward to reading all the new posts.  Someday I hope to meet other members of this D-community!!  Each day I also want to add a picture of something that makes me smile.  Today's photo is:

Yup - another one of my doggies!  This is the day I brought Kasper home - Basil was really not too sure :)  If I am having a bad day this photo cheers me up every time.

Introducing....celiac disease!

That is right folks I have celiac disease to add to my list.  In a way I am relieved.  For quite some time I have been suffering terribly with stomach issues, very unpleasant, run to the bathroom, bloat to the point of looking pregnant issues.  Initially I brushed it off as some sort of bug, but it persisted and only got worse.  I had read up on celiac disease and knew that it was common for Type 1 diabetics to suffer with this as well.  The more I read the more dread I felt.  Every symptom matched mine, every gross and gut twisting symptom.  Because I am super stubborn I did not go to the doctor right away.  Instead I did my own test by cutting all foods with gluten in them out for one week.  After two days of eating gluten free I started to feel much better.  I was not bloated at all, my stomach was not rumbling and I no longer had to live in the bathroom.  Even my skin started to look better (have been having skin issues since taking neurontin).  I finally went to see my doctor and spoke with her about it.  She said that from all I was saying all arrows pointed to celiac.  She looked at my last blood results and sent me for a bunch more.  I had to eat gluten rich foods for the three days prior to the test and for three days was miserable!  Now I am off them again and starting to feel good again.  At first I was very upset - the last 8 months have been super overwhelming and I feel like I have been hit constantly with bad news.  I am still coming to terms with the diabetes diagnosis and now this.  I know that eating is going to be a bit more complicated as I have to watch my carb intake as well.  I have been reading other blogs with people who suffer with Type 1 and celiac and know I can do this.  It will take a lot more preparing on my part, but I think I am up to the challenge.  Today I feel positive about it as I just want to feel better and be able to do my exercise (particularly runs) without worrying if I am going to crap myself :)  Any tips from other Type 1's and celiacs?  Any special recipes you love?

My Dogs

Here are my two dogs - Kasper is the one on the left in both photo's and Basil is the one on the right.  They are Westhighland Terriers (Westies) and Kasper is just about 4 and Basil just turned 5.  I know this is not diabetes related, but they are damn cute and I consider them my kids :)  I love them to bits.  Hope they can make you smile as much as they make me!  Actually, they are kind of related to my diabetes journey.  I talk to them about it daily and they listen very well.  When I am having a bad D-day they are the perfect cuddle monsters.

The Complications

During my week in the hospital I began to learn all about the possible complications that can come with diabetes.  I have to admit that the long list scared me!  Seemed like everything from head to toe could be affected.  From that point on I was determined to do everything in my power to take control of my diabetes and hopefully avoid as many of the complications that I could.

I knew that something was not right with eyes and hoped that this could be remedied.  Once they started to bring my sugars down I noticed that my contacts and glasses no longer helped me see, my vision was beginning to get fuzzier each day.  After being discharged from the hospital I made an eye appointment and saw a new optometrist, one that had experience dealing with diabetics.  He confirmed that I did have cataracts in both eyes, the left worse than the right.  He referred me to an opthamologist and I returned to see the optometrist every week.  I saw the opthamologist in November and by this time I could hardly see out of my left eye.  It was like looking through a glass of milk. He took one look and advised that I needed to have eye surgery on my left eye as a matter of urgency as the lens was on the verge of bursting.  The right eye would need to be done shortly after.  He confirmed that this was as a result of going undiagnosed for too long and then having my sugars regulated too fast.  Needless to say I was pretty upset.  I had both eyes operated on and the cataracts removed during the following three weeks.  Each surgery went very well and for the first time since I could remember I could see without glasses.  The opthamologist said that I had the vision of a 4 year old child, perfect.  I had to use drops for a total of nine weeks and I was not allowed to drive or swim.  It was a bit surreal attending for the surgeries as I was easily 40 years younger than the other patients.  I do have to wear reading glasses as I no longer have the ability to focus.  I am so extremely grateful to my amazing eye doctors for their help and to my boyfriend who drove me wherever I needed to go.

Now....the feet.  About three weeks after being diagnosed I noticed some tingling in both of my feet, mostly in the toes.  Over the next while the tingling turned into burning and stabbing pains.  It became absolutely unbearable, to the point where I could hardly walk and was not sleeping at all.  It felt like someone was torching my feet with fire while poking me with a taser.  My doctor started me on neurontin and referred me to a neurologist.  I began reading all the material I could to find others with the same issues and did find stories of people with similar issues.  All had started as a result of their blood sugars coming into normal range too quickly.  By the time I got in to see the neurologist I was in rough shape.  The pain had spread into my legs, arms, hands, ribs and chest.  I was sleeping on average an hour a night and had been put on short term disability from work as I was unable to function at all.  My doctor had tried me on some very strong painkillers, T3's and Percocet which did nothing to touch the pain.  The neurologist was very thorough and confirmed that it was nerve pain I was suffering from and was likely as a result of having my blood sugars knocked down too quickly.  He explained that I had spent a long time with a lot of sugar in my blood which in a way had put my nerves in hibernation.  My nerves were put into shock when my blood sugars dropped drastically in such a short amount of time and were in the process of regenerating themselves.  Apparently regeneration is a very slow process and very painful and he felt this was positive in that I had no permanent damage.  He did reassure me and was confident that the symptoms would gradually resolve themselves, he expected within a year to two years.  He gave me a prescription for amitryptiline and advised me to up the dose of neurontin.  I left his office feeling a bit more positive but extremely frustrated with the whole situation.  Over the next three months things did get gradually better and I am now able to do a lot of the activities I could before.  I still cannot wear closed toe shoes for long as my feet get hot and begin to burn, it is like they cannot regulate their temperature.  I still cannot take a hot bath or stand in the shower for too long for the same reason and each night I have to put my frozen magic bag on them to cool them down.  I do not complain now though as even just a few months ago I was living in hell on earth.  I am so happy to be able to run and workout again and be my usual happy self!  I am sure my friends and family are happy about this as well - I was a miserable person for a long time!  At its worst I was very depressed and can honestly say I did not see the point of living anymore.  I was a mess!!

I cannot help but wonder had the doctors in the hospital not dropped my sugars so quickly would I not have suffered with these complications so far?  I have a lot of work to be done on my teeth as well from going undiagnosed and also the neurontin is not good for the teeth.  I am happy to be backing off the neurontin slowly as I do not like the side effects, weight gain and bad skin the name the worst.  I have gone from 2800mg to 900mg which makes me happy.  Going through these experiences, particularly with my nerves, drives my determination to take care of myself!  What complications, if any, have you experienced?

The Diagnosis

Where do I start?  Right from the beginning I guess.  In the fall of 2010 I started to notice some things going on in my body that just did not feel right.  I am usually someone who has a ton of energy and all of a sudden I had none.  I remember going to Banff to run Melissa's Road Race and for the entire 22km my legs felt like lead.  Did not make sense to me as I could usually run 22km no problem.  I felt awful, but being the stubborn person I am I finished the race and put my lack of energy down to the fact that I had been training consistently and was probably in need of a rest.  It was around this time that I noticed my weight was decreasing.  Not rapidly at that point, but I was definitely shrinking!  I went to my doctor, well the locum doctor that was covering my doctor's practice while she was on mat leave, and she sent me for some blood work as she thought perhaps I was anemic.  Those tests came back normal and we decided that I had been under a lot of stress for a long period of time due to the health of my parents and the breakdown of my marriage the year before.  She suggested that I try and take it easy to see if I improved. 

Over the next six months things progressively got worse.  It was so slow though that I did not think anything serious could be wrong.  My weight dropped a bit more and I noticed that my energy levels decreased more and more.  I felt tired a lot and not motivated to do much.  I also started to have an appetite of a full grown man training for a ultra-marathon.  I was always hungry and ate what felt like constantly.  I also began to drink a lot of water.  I was still stubbornly exercising a lot (although it took all my energy to do so, I often felt better after) and attributed my hunger and thirst to that.  I did return to see the locum doctor in the spring of 2011 and she tested me for thyroid issues.  Those too came back normal.

During the summer of 2011 things got worse, fast!  I had no energy and all activities started to feel like a huge undertaking.  I was eating and drinking everything in sight and I noticed that my vision was getting a bit fuzzy.  Since I was drinking so much fluid I was peeing like crazy.  Looking back I should have known something mega was up but at the time I did not.  I went to see an optometrist because of my eyes and she found that I was starting to develop cataracts! WTF?  She was stumped as I was only 32.  She put me on a waiting list to see an opthamologist.  I remember going camping in August 2011 and feeling so tired.  I could have a five hour nap and still sleep all night long.  During one camping trip my feet swelled up and I thought I had been bitten by something.  Oh yes, and my weight - it was starting to drop off me drastically and I could not figure it out.  I was eating more than ever and could not keep any weight on.  My family were concerned and even started to wonder if I had an eating disorder!  I went from a curvy, athletic size 6 to a scrawny size 0.  By this time I was starting to worry and was actually scared to go to the doctor as I had convinced myself that I probably had cancer or something.  Finally I did go to the doctor during the first week of September, 2011.  A new locum had started and she was concerned.  She sent me for a thorough round of blood work.

September 7, 2011, a Wednesday, I was at work when my doctors office called in the morning.  They said that I needed to come in right away.  I had a meeting to go to and asked if I could come in the afternoon.  They booked me in for 3:00pm and told me that should I start experiencing chest pain or shortness of breath to go straight to emergency.  This freaked me out and I asked if they could give me an idea of what was going on.  They told me it looked like I may have mono.  I remember being totally bummed out, mono?  Man that totally sucked but explained most of my symptoms.  I went to my doctor at 3:00pm that day fully expecting the confirmation of a diagnosis of mono.  Well wasn't I in for the shock of my life!  The doctor sat me down and proceeded to tell me that I had Type 1 diabetes and that I would need to start insulin therapy right away.  She wanted me to have more blood work done and sent me to the nurse.  The nurse was in tears when I saw her - I was in total shock.  She showed me how to test my blood and we spent over an hour together as she figured out how they wanted to go about bringing my blood sugars down.  Before I knew it I was ready to inject myself for the first time and that is when I broke down.  I could not believe what was happening to me.  

I left the doctors office in a haze, armed with insulin pens and a prescription for a years worth of diabetic supplies.  I drove straight to my boyfriends house and broke down again.  He drove me to get my blood work and then took me to my pharmacy to have my prescription filled.  I felt like I was in some sort of nightmare and was terrified.  I did not know what I was supposed to do and felt so unprepared and uneducated.  When we got to my house around 8:00pm the phone was ringing.  It was my doctor.  She told me I had to get the nearest hospital emergency right away.  I told her what hospital I would be going to and she said she would call ahead.  By the time I hung up I was terrified!  My boyfriend drove me to the hospital emergency and they took me right away.  My blood sugar was 38mmol and the triage nurse was amazed that I was even alive.  They weighed me and I had dropped to 118lbs!  They had me hooked up to every machine under the sun and confirmed straight away that I was in DKA.  They started me on a slow insulin drip and I was admitted.  I was kept in the hospital for one week and during that time I tried to learn as much as I could.  I was very frustrated and spent a lot of time crying!  I have to say that I don't remember a lot of my time in the hospital, I think the shock of it all has blurred the events.

Well that is it folks!  Was diagnosed 8 months ago tomorrow.  A lot has happened since then and I will cover it in other posts.  I now do feel healthier than I have in a long time and have lots of energy again.  I get very upset when I think of all the time I went undiagnosed, but there is not much I can do but keep my chin up and deal with this thing called diabetes!

Me with a blog?

There have been many times in my adult life that I have though about starting my own blog.  When at 19 I took off for Europe to live and travel I intended to start a blog as a way for my friends and family to keep updated on my adventures.  Turns out that in 1998 not a lot of people in England (where my base was) had computers in their homes and internet cafes were too expensive for my meager budget.  I ended up sending a lot of postcards!  When I discovered my love of running I thought again about starting a blog to share my experiences and to keep track of training.  I ended up making a lot of great friends in the running community and did not find a need to write a blog...oh and I purchased a GPS which tracked all my training in a super cool way :)

On September 7, 2011 I was diagnosed Type 1 diabetic (that story to come in the next post).  Since then I have been through a lot, had to have cataract surgery in both eyes, suffered with extreme nerve pain in my body due to having sugars regulated quickly and just yesterday was told I have celiac disease as well.  Although my family, friends and particularly my wonderful boyfriend, have been a great support, I feel a bit lonely and lost in my new lifestyle.  I have found myself reading blogs of other diabetics and have learned so much.  I like feeling part of that community and knowing that I am not alone.  I want to be able to share my experiences with others in the same situation and hope that I can be of some comfort as well.

So here we go.  My first blog.  If any of you out there read this feel free to leave me feedback!

Jocelyn