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Diagnosed with lupus as well as diabetes

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Posted 1/27/2010 8:01 AM (GMT 0)
I have been diabetic now for 15 years. I had lost 100 lbs in five months. That was when I found out I was an insulin dependent diabetic. Eventhough I watch what I eat and exercise my sugars still go out of control.  For the past two yrs I was having trouble moving my arms. It is hard for me to walk. I asked my doctor why I was in so much pain.  She thought it might have been arthritis.  It took almost a yr but I was finally able to get into a rheumatologist.  I just found out at the beginning of the yr.  I have lupus.

  The funny thing is I started losing my hair when I found out I was a diabetic.  I was only 18.  I didn't know that diabetes ran in my family on my father's side.  I finally found out two years ago.  When I finally met my father.  Come to find out rheumatoid and osteioarthritis runs in his family as well as diabetes.  You know it's hard to accept the fact that you have to give yourself insulin shots just as you're reaching adulthood.  The doctors telling me I wouldn't live to see 30.  Well needless to say I'll be 34.  So I proved them wrong.  I look at it though that I'm already on borrowed time as it is.

   To be told that you have a disease that literally eats away at itself from inside out Sucks.  The meds that is available can give you kidney problems.  Well as a diabetic you already have a chance of developing kidney problems, eye problems, neuropathy, depression. So once on meds you really have to watch your food, your excercise.  I have yet to start any type of treatment because I have to go through so many tests it is unreal.  Soon I will have a kidney biopsy to see how damaged my kidneys already are due to diabetes and if lupus has already started attacking them.  I also have to see how bad the cataracts in both my eyes are. 

  How do you not ask why?  Diabetes is already hard to deal with. They are days when I don't want to deal with it.  I at least get up and take my main shot every morning.  But if I want to eat something I have to take a coverage shot.  So I take multiple shots.  It bites butt.  My body used to tell me when my sugars were up. Now with my body attacking itself it doesn't know what the heck kind of signals to send my brain.  Then on top of all this the doctors throw in LUPUS into the mix.  To have multiple diseases with diabetes you don't know if you're coming or going. 

  Please let me know how you cope.  I'm scared and confused and can use all the advice I can get.

 

 

 

Posted 1/27/2010 12:49 PM (GMT 0)
You certainly have had your share of trouble and early on in life to boot. I guess that's what life is all about (I'll let you know once I've got it completely figured out ;-) Sounds like you've got a great attitude -- I like proving the doctors wrong too :-)

In my experience, this forum has been a great help in learning how to cope with my situation, in terms of education and sometimes just a place to vent my frustration. There are many around here worse off than myself -- reading their stories and listening to their advice has been therapeutic for me ... maybe it will be for you too.

Stick around .... read ... offer advice ... vent!

Welcome to the forum :-)
Posted 1/27/2010 1:05 PM (GMT 0)
My type1 knowledge is limited but I hope that Phisbowl will be by soon to help out. Tons of experience, good tips and a great attitude all wrapped up in one person. Also, please hop on over to the Lupus forum, too. There are lots of great lupies there and they are willing to lend a hand. Wishing you better days. We will be here for you.
Posted 1/27/2010 7:52 PM (GMT 0)
15 years, WOW! Seems to me like you've done great so far :-) I'm just 5 years in and man! It's been a rocky ride. I agree, too, that sometimes LIFE just sucks. Oh ya, it loves to kick ya when you're down, too. I have realized one thing though, it does get better.

It took me getting really angry at the apathetic attitude of the medical profession, to really launch myself into focussing on how my body works and how I can live with the disease given the tools provided. The more knowledge I gain the more I truly understand just how individual this disease is and just how much control (or not) I have over the day-to-day management of it. The devil is in the details, my friend.

I understand the courage it takes to stick yourself with a needle every few hours of every day but I appreciate that doing so allows me not only live but, live as normally as possible. I also appreciate the mental dedication it requires to stay on top of things and if there's one break I'd like to have it's that. Just being able to go a whole day without the constant sanity checks.."when did I last test? Eat? Am I low? do I feel wierd? What should that cookie cost me? That snow shovelling? Blah, blah, blah. Arghhhh! Leave me alone! At least I can go shop for a few hours when my husband gets annoying - LOL :-)

That being said, I've also recently come to realize just how much Diabetes can affect your mind/mood/well-being. There is a well-known association of depression with Diabetes, especially after some time with dealing with it. I've hit rock bottom a few times and some long-term, major depression has just seen me starting Cymbalta this Sunday. But that's another story. :-)

How do I cope? One day at a time. I do that by keeping a daily log book of all my BGLs, insulin doses, food, exercise and more, on a lovely Excel spreadsheet I created. For me, if it's not measured, it's not managed.

Seems possible to me that if you can get your BGLs maintained then maybe the Lupus area can be focused on in kinda like a controlled environment (with the steady BGLs). You also need to find that spark you had in the beginning - that determination to live your life no matter what they throw at you :-) I know, easier said than done but, it can be done.

We'll stumble along through it with you if you like.
Posted 1/27/2010 7:56 PM (GMT 0)

Was your hair loss related to diabetes? My hair fell out also but no one woudl ever say what caused it.

I also suspect I have lupus. I am also diabetic.  Do you ever have on your joints odd irregular lesions? This has happened to me and the several doctors I have been to do not see what it causing it. I think it is the lupus. My joints are so sensitive wwhen I have these episodes the slightest touch can send me into a frenzy of pain.

Posted 1/27/2010 8:13 PM (GMT 0)
Before I was diagnosed, I too was losing my hair in alarming amount. Makes sense when you consider an undiagnosed type 1 would not be absorbing ANY minerals and nutrients into the cells for lack of insulin (the key that opens the door to the cells). In fact, the body is desperately trying to get what it needs from wherever it can and that happens to be somewhere else in the body: mucles and tissues, etc. The body feeds off itself till insulin can unlock the door again.

The hair did stop falling out and eventually grew in thicker but, I do notice, being on insulin for 5 years now, that at times my insulin use seems to be related to some loss. I'm also over 40 so, some of that could be natural. It's all hormones.
Posted 1/27/2010 9:16 PM (GMT 0)
 To those that have read and replied.  Thank you for your words of encouragement.  For years the doctors couldn't tell me either why my hair is falling out.  I still to this day know why or what has caused it.  All the doctors could tell me that it is an autoimmune disorder.  I came to accept it and dealt with being at the time 18 and going bald.  I had a hard time finding work because of "looking different".  People would give me the advice of why don't you get a wig.  To me that's not me.  Either you accept it or don't look.  I dealt with it in my own ways.  When I was in my 20's a very dear friend of mine suggested I shave my head.  I did completely.  Not just buzzed down but took a razor to it.  Then I'd let it grow back during that winter.  Come spring I did the same thing.  Surprisingly all my hair grew back,

   My hair had fallen out in the shape of mickey mouse. That is what helped me to decide to shave it.  And when I did I also said that if mickey came back I would keep my head shaved.  I didn't keep it completely shaved because he didn't reappear instead I lost it in other spots. So I would have half of my head shaved.  It was the in style in the 90's.  I was still considering myself as part of the "in crowd".  I had fun with it.  I really did like it though when it all came back.

    Then it started to fall out again.  I still have fun with it.  I do where a hat sometimes when I'm out in public.  But my head is now shaved.  Except for maybe 12 strands of hair I call bangs.  They have a natural curl to them.  One day they were sticking straight up like horns.  My friends were like so are you Horny today or what.  I didn't know what they were talking about until I went and looked in the mirror.  Like I said they look like devil's horns.  So even though I'm soon to be 34 I still consider myself as young at heart.  When I get in my moods of I don't care I stick them up and go out in public just to see peoples reactions. It's fun especially since I live in a small town in West Virginia.  tongue   In fact my fiance has never seen me with hair.  I'm his bald headed hoe.turn

Posted 1/27/2010 9:30 PM (GMT 0)
  Yes I have the joint pain to where I can't move my arms or my fingers don't want to straighten out.  I at first thought it was carpultunnel.  So I had both of my hands worked on.  But before that I had to see a neurologist to make sure that it wasn't the dreaded diabetic neuropathy. That's when they found I was positive for ANA's.  But it still took a year before I could see a rheumatologist.  It was mentioned at the neurologist that it could be lupus. It had been so long that the thought left my head. When time came and I went to the rheumatologist and she said it was lupus. I wanted to die even more than when I was diagnosed an insulin dependent diabetic..

   My doctors and I will be developing a long time relationship.  I have four specialist and a regular family physician.  I haven't started treatments yet only because there are test and base line numbers that have to be established.

   I have now filed for disability in hopes that I'm able to get a medical card to absorb the costs.  Right now I go through a free clinic.  And unable to see an actual diabetic specialist. I deal with life like other people do. One day at a time and remember there are people worse off than me.  thanks again for the advice.  In just  24 hrs this sight has helped me.

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