WELCOME
When the tiny door above opens & shows morning, then becomes evening -- often enough, the days go by & the years quickly add up. I have opened my door for you. I am Jan Hughey, DTM. Bluda Sue MM 507C is my insulin pump. I have written two books (both LARGER PRINT, BOLD):Tolerating the Sweet Life and A C.L.I.P. of Poems. Miss America '99 wrote the foreword with her pic on the back cover of TSL. http://www.maxpages.com/TSLandCLIP
On my Yahoo! support group I'm called "w.O.w" = wise OLD woman. One person said I'm wiser than that Chinese philosopher, Confusion. I have to laugh; it's too easy to cry at the type of an @MY DIAGNOSIS I was born 5/39 & diagnosed with Type 1, Juvenile Insulin Dependent Diabetes Mellitus (IDDM) on 11/5/50 in a diabetic coma. My stepfather had boils; I believe I got the staph infection from him due to holding me when I was 3; I remember a boiI on the web of my left thumb back then. I suffered a lot with these sores on a steady basis the next 8 yrs, I didn't see a dr until 10/30/50. My stepfather visited doctors often; he also had housecalls. I missed a lot of school & once had 5 boils on 1 leg & could hardly walk. I still have the pock marks. I was treated with Watkins Petro Carbo salve/BandAids. The carbuncles (2-headed boils) where I sit were extremely painful. I had 1 when I was 3 & cried while I slept so the blankets had to be held off me. In 6th grade I fell off my desk seat in school since I couldn't sit on a carbuncle. It reminds me of Job's boils in the Bible.
A pin will pop a balloon & will burst if overblown. If you grind a stone long enough it will wear away like a pebble in a brook. This 8-yr poison in my little body probably overstressed & destroyed my pancreas. I am the only DMer in my family of long livers (father is 93) -- even after 5+ decades. A penicillin shot could have cured the infections when I was small. Penicillin was discovered (in bread mold) in 1929 & available in the States after WWII. At my first doctor visit we were told I needed my tonsils out & I was run down; at another dr. the next day I was given 2 vitamin shots - my first-ever shots. We were told nothing was wrong, that I was just a kid complaining; 5 days later I was in the coma, taken to the ER where I was diagnosed, and hospitalized 16 days. I had classmates, as well as my hugsband, who had boils as kids & didn't contract diabetes -- boils are not always an indication of DM, in my case I believe they caused it. Something had to give after 8 years' suffering -- my liver, kidneys, or -- pancreas. I also received no childhood immunizations/vaccinations.
SHOULD I REWRITE HISTORY? I was recently asked to rewrite history & delete some of the above, however, I still have the diary I was keeping & much of this is all documented. The doctors' names are recorded as well. My very first entry says: "I was sick all day. Stayed home." I had many entries of me being sick & referencing boils - no dr visits. I have a running account of Koko & me being sick & the day she was taken to the vet. I went the next day. Changing facts won't change facts. A teen's thought: "Even the most well-intentioned family member can't truly understand what it's like to live with DM day in/day out." Family support is vital, yet lacking. I also have a good memory. Long-distance calls on a 4-party line were very few and costly in '50 & before.
ABOUT TYPE 1 & TYPE 2 DIABETES MELLITUS Type 1 DM is an auto-immune disease & the patient has to take insulin by injection or infusion or will die since the pancreas has failed. A Type 2 suffers from insulin resistance & often can be treated by diet, perhaps 1 or more of the many BG-lowering pills, or may take insulin or a combo of pills/insulin. For 31 years I took 1 daily injection of 45 units of NPH/Reg beef/pork insulins. The following 2 years I had 2 daily shots. There were no home BG testing methods, nor A1c's (an average over a 3-mo period). The urine tests were grossly inadequate. Technology has vastly improved over the last 5 decades!
TREATMENTS At the present time, treatment for many DMers is MDI (Multiple Daily Injections); often 3-4+ shots each day. Some people think DMers are "bad off" with so many injections or using a pump. In reality, we are taking advantage of the best treatment available at the present time. It's Freedom With Flexibility.
A long-acting insulin via shot, or a rapid-acting basal insulin (Apidra/Humalog/Novolog) that is infused keeps the body functioning. The additional shots or infused boluses of rapid-acting insulin are to cover the carbs if/when eaten, mimicking a more normal pancreas. The restrictions of sugars/carbs are fewer doing this method of treatment. Many Type 2 DMers are treated with diet/exercise. There are several pills available for T2s to lower BGs or make the insulin more effective; some may take more than one. Often at a later time, insulin must be added since the goal is normal BGs. Frequent testing is a must to know what one's level is at any time. I test 6-14x day, depending on how I feel as sickness, stress, in/activity, etc. can wreak havoc on BGs. A reading can change in 10 min. As of 2/22/07 I use Novolog in my pump. My BGs seem to have evened out better.
MEMORABILIAI have a collection of paraphernalia starting in 1950 so set up a 16' display table at a party including my Clinitest set (pee test) & some Acetest tablets (acetone test --no ketones then, which lead to DKA - Diabetic Ketoacidosis, coma, then death); 40u/80u glass syringe (in red/green) & 26g steel needle as well as the creamed herring jar w/old Jif PB lid (original rusted) to keep them in with alcohol (my equipment was very seldom boiled); B-D automatic injector; copies of blood sugar (BG) tests in the hospital - which was ONE a day; tall, skinny Velosulin (pure pork) insulin vial; Velosulin BR (buffered later for use in pumps) an updated, squattier bottle of Velosulin BR Human; my 2nd insulin pump with batteries, chargers, & reservoirs; different-sized disposable syringe boxes; triangular shaped Sucaryl (Cyclamate) bottle w/slanted, pointy lid; 1st meal plan; & more.
THE BASH The party which I called a BASH (Bawling, Amazement, Sincerity, Humor) was held on 11/4/00 to celebrate life & survival of 50 years with IDDM. If warm & breathing, Joslin Diabetes Clinic gives a bronze 50-year medal; the Eli Lilly Corp. engraves your name on a sterling silver medal. A certificate is issued for those who have survived 25 years. Eight more people from the internet whom I had not met were in attendance. Presently I have met about 150 e-pals (& a service dog). Close to 100 attendees made the day very memorable. I have a picture website about the BASH: http://www.PictureTrail.com/dmBASHpics which also includes an album of THE EVOLUTION OF PUMPS including the '63 prototype of the backpack pump. To apply for Joslin awards: http://www.joslin.harvard.edu/contact.shtml. For the Lilly awards: http://tinyurl.com/atspb In January, 2003 I went to Phoenix for a weekend to attend a 60th DM anniversary for Tom Beatson http://www.picturetrail.com/tombeatsonparty
My hugsband & I observed our 40th wedding anniv. in July, 2000 & had a simultaneous celebration at the BASH. We have 2 natural children (10 months & 14 days apart), 4 grandchildren & claim 2 half-sisters of a g'dtr as well. UPDATE: Our son died of esophageal cancer 11/7/05 after being diagnosed 6/21/05 at age 43. Our home is in Indiana. I have held numerous part time jobs, & have not been able to work fulltime since the births of our children. My get-up-and-go has got up & went. To preserve my sanity when the kids were little, I sold Tupperware for 10 years, being a manager with a brand new-station wagon for a short while. My favorite job was at the oldest hometown weekly newspaper in northern Indiana. I was typesetter, proofreader, layout, society editor, newswriter, & wrote 2 of my own columns alternating weeks - this was all on a part time basis. (The Diet Delighter & Cent$ible Idea$).
MY PUMPS Currently I am using my 6th constant infusion insulin pump - a blue MiniMed 508, named BLUDA II. On 8/23/83 I began using my first pump -- a CPI/Lilly #9100, the size of a checkbook box. It delivered in whole units only, with 1 basal rate (the constant infusion that is scheduled according to the amount set). After 6 weeks, it was upgraded to a #9200 Betatron II that was the size of a king-size pack of cigarettes. Besides the smaller size, it also delivered in whole units but had a supplemental basal rate & the last bolus (spurt of insulin delivered to cover a meal IF/WHEN it is eaten) could be recalled. My basal rate was 21, meaning it delivered 21 units of basal over 24 hours. I used that pump for 9 years until CPI quit manufacturing pumps -- supplies were unavailable. I was in a user study for the Betatron IV pump which was smaller/lighter weight. I did not care for it so stayed with the Betatron II. http://www.picturetrail.com/dmBASHpics for pump evolution.
BLUDA SUE's BEGINNINGS & PRIOR PUMPS My next pump was a MiniMed 506 which I used for 6 years until death parted us -- its, not mine. Bluda Sue (507C) replaced the CPI pump, was the size of 3/4" stack of business cards, had a potential of 48 different basals in 1 day, recalled the last 10 boluses, as well as many other features/alarms. Pumping has changed my life. Infusing the appropriate amount of insulin to match the carbs eaten (no matter the source: sugar, veggies, fruit, breads, milk, etc.) allows a person with diabetes to attempt mimicking a naturally-functioning pancreas. The infusion site is changed by the user (or parent/caregiver) every 1-5 days depending on the individual.
How did the name Bluda Sue come about? When I was 3 years old I wanted a name for my dolly no one else had ever thought of. I sat out on my "therapy curb" where I solved many problems & came up with Bluda Sue. Sure enough, no one else ever thought of it. My pump is royal blue, therefore, appropriately named. My first car, a 5 y/o '53 Chevy Bel Air was also blue & used the name.
MISS AMERICANicole Johnson, Miss America '99, used the same color/model pump as I, when crowned. We met her at a DM conference near Chicago 4/20/02 - she hugged both my hugsband & me & my camera didn't work! A lot of questions about pumping can be answered at www.insulin-pumpers.org which also has the world's largest internet pump support group with over 5,000 members). A good pump comparison chart is at: http://tinyurlcom/7djtj.
HOME BG TESTING In 1982 I began testing my own blood sugars (BGs = blood glucoses) but with a strip that I compared to a chart on the container. I cut these into 1/3s to save $; meters back then were about $400 (ins. did not pay for meters/strips) & not too reliable. I preferred the Chemstrip bG which took a minimum of 2 minutes, sometimes 3. I was given 800 Visidex strips to use - by a Miles Lab employee. I now have 2 Accu-Chek Advantage meters.
Recent A1c's were 6.1% / 6.3% / 5.4% - the best ever in over 50 years of IDDM. "Normal" is between 4-6%; it is recommended for a DMer to be 5-6.5%. In the early years, we had a BG done at the lab or doctor's office once every 3 months (no A1c's which is a 3-mo average). It is important to track what is happening, therefore, TEST! Activity, hormones, stress, & even et cetera can affect a blood glucose level - whether it causes a high or low. A normal BG is from 80-105. If low, sugar in some form should be ingested quickly (i.e. regular Coke, orange juice, grape juice, jam/jelly, syrup, honey, glucotabs). Test again after 15 min. If no rise is indicated, treat again. On occasion, 9-1-1 must be called. A good number to remember for glucose "perfection" is 100 - but living 'life' is equally important for some normalcy. 100 is a "goal" that isn't always achieved. Family support & awareness are essential for the well-being of a DMer. Cyberpals may become replacements.
HOW I WEAR MY PUMP If I have no pocket, my pump is worn in colored coin purses or cigarette bags (the right size) that zip. I put a key ring through the zipper pull, then a 2nd ring through the 1st for a belt loop. To avoid static electricity disturbing the microchips in the pump, I place 1/3 of a used-once fabric softener sheet inside each bag. The 43" infusion tubing is tucked inside my clothes. I try to be discreet, but will teach about it at the drop of a hat. There is a lot of misinformation spread about. The infusion set I use is in the style of a thumb tack but has a Teflon canula that I do not feel. I change the site every 4-5 days not returning within 1" in a month.
MY VISION LOSS & CORRECTIONSMy sight was restored twice. In January & March of '94 I had DM cataracts removed that had taken 30 years to develop. My sight was 20/20 & 20/25 about 6 weeks later which was great to be able to drive again. In Oct., '96 I got a new Rx for glasses. They didn't seem right so went back to have them checked in case the Rx was incorrect. I was sent to Indy to a vitreologist who said my vision could be corrected to 20/50 in my left eye -- sight of 20/40 in at least 1 eye (corrected) is required to drive. Three weeks later I saw my local ophthalmologist & was told my vision in that eye was then at 20/200. It was scary. By February I had to give up night driving & shortly thereafter could not drive at all since both eyes were bad. I could not see my features detailed in a mirror nor the groceries on the shelves. My vision had gone to 20/400 with glasses. After healing from a vitrectomy on my left eye 5/97, I now have 20/20 vision again in that eye & 20/25 in the other which was later treated with laser to remove a bubble which had formed behind the implanted lens. I wear glasses for the bifocals since plastic implants can't focus. UPDATE: 4/19/08 I got double vision, dx'd as 6th-nerve palsy. I have to keep the offending eye patched & single vision should return within a year; 6 nerves control eyes & 1 has a neuropathy. UPDATE: 7/14/09 I have double vision only when tired and looking at a distance.
MY HEARTIn May, 2002 I flunked a nuclear heart scan & had a heart catheterization which showed 6 blockages from 20% to 100%. I do NOT want to be sawed open, which disqualifies me for a kidney/pancreas transplant. When I saw the cardiologist for a follow-up he did not Rx any more meds other than nitropatches to control angina pains. I have nitroglycerin pills in case I have an 'episode.' One artery is growing sub-arteries behind.
MY KIDNEYS
When my kidney function had declined to 12%, losing weight, sleeping 12 hours a day, no appetite/gagging on my food/pills, the nephrologist said it was time to do hemodialysis. I had a Gortex loop inserted in my left forearm 10/01 to be ready. I started dialysis 7/8/02, I travel 4 mi away 3X a week to sit in a La-Z-Boy (5 hrs. total) hooked to two 15g needles the size of Bic pen refills to clean my blood. I feel ever so much better with much more energy. Starting at 12% function for T-1 DMers helps have a better quality of life. I still have about 3% urine output.
I found some old lab A1c's: 5/93 = 11.3%; 9/94 = 10.2%; 3/95 = 11%; 8/95 = 9.9%; 2/97 = 7.6%. The ADA wants below 6.5%. This is how I lived for years & years (even before those tests were invented). I was pumping at the time of these tests, but not taught how to use the tools/pump. "Just let the pump deliver the insulin & eat according to the exchange system with the usual bolus" were my instructions. After I got on the 'net in '99 I learned at least 17 things about pumping I had never been taught. Who knows, with better control years earlier I might not be dialyzing now? This really isn't a 'fun' disease to have.
DM CHANGES SINCE 1950In 1950 a dr told me many things would come along in my lifetime to help diabetics, but nothing would ever help me. I went to his funeral. The 4 greatest changes for me are home BGs, the pump, rapid-acting insulin, & the 'net - where I received better pump knowledge than my endo ever offered over 16 years. The pump is like a new baby - it isn't perfect but I love it anyway. I thank the Lord for blessing me with a sense of humor. I try to see the funny side of life, though it doesn't always happen. Laughing has been instrumental in giving up an anti-depressant - it gets the 'juices' flowing. Learn to laugh, & laugh HARD! Proverbs 17:22
TOASTMASTERS
Joining Toastmasters in '88 helped hone my public-speaking/leadership skills. I served 2 yrs as a Division Governor, being named Div. Gov. of the Year, & am #6,888 to receive DTM (Distinguished Toastmaster) out of over 3m members since 1924. My hugsband joined(www.toastmasters.org) 1/94. As a trucker, he had the privilege of attending about 70 clubs; I visited at least 14. I have spoken for health support groups, service clubs, church functions, businesswomen's groups, & schools.
THANKS
Please sign my guestbook so I'll know you stopped in. Check http://tinyurl.com/evolutionofpumps and http://tinyurl.com/TSLandCLIP
w.O.w. (Jan), & Bluda Sue
Thou hast granted me life and favor
and Thy visitation hast preserved my spirit. Job 10:12
For I am not ashamed of the gospel of Christ
for it is the power of God unto salvation;
to the Jew first and also to the Greek (Gentile). Romans 1:16
HAVE A NICE ETERNITY
Write to:
P.O. Box 1088
Granger, IN 46530-1088
e-mail dm50yrs@yahoo.com
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