DKA and other fun stuff

Ok, so for like the past month, I've been nauseous almost constantly (and no, I'm not pregnant - I'm sure).  It's hard to eat at times, and I get heartburn a lot since stopping my Nexium.  Apparently, I have gastroparesis, and some of the meds I've been taking don't help with it, so I've stopped taking them...

After a four day stay in the hospital last week, I hope to goodness I'm done for a while.  I had been throwing up for a couple of days prior to my admission and didn't stay on top of my blood sugar like I should have - especially that morning.  I was visiting my new endo, and he hospitalized me for DKA then didn't show up at the hospital (which wasn't my choice hospital in the first place - ugh!) and instead left me in the care of three doctors in four days. :(  Seems each of them had their own agenda, but I finally got released - which was very important to me due to my grandpa being in the ICU, which was the first place I headed when I got home.  My Papa is better now, but he is still on a catheter and at home.  He has a couple of doctor visits coming up, as do I.

I talked with my PCP during my followup this past Monday, and he referred me to a surgeon since it seems like every time I experience stomach pain, my gallbladder and/or appendix has to be involved.  They did an ultrasound of them this go-round, so I can't wait to see my new surgeon on consult regarding this and see if yanking out my gallbladder and my appendix will help with the constant stomach pain and nausea.  I also have a new internal medicine doctor and will schedule an appointment with him this upcoming week.  He goes to my church, and his wife is a wonderful lady!  =)  I will see my endo as well as my GI doc on the 13th, providing I can get dismissed from  jury duty.  If not, I'll have to reschedule both appointments (again)!

The good news is that my fibro pain seems to be fading slowly but surely.  I place responsibility for this on my wonderful chiropractor and his nurse.  It's so nice to get a "proper" adjustment that doesn't consist of a gun-like tool but hands-on instead.  I also think the ultrasound therapy and traction bed help immensely.

Other than that, Pais is now in second grade - and my 38th birthday is looming in the near future.  The 10th annual Brownwood Reunion is coming up in two weeks, as is my 20th class reunion!  No rest for the weary, right?  hahahahaha  Wrong!!  I'm loving naps lately.  They seem to help me regain my strength...  Now if I can just feel good enough to go to a football game, life would be lovely.  After beating the #7 state-ranked team 27-26, my Longhorns lost to the #4 state-ranked team 23-20.  They put up a heck of a fight, and if the game would have gone a bit longer, they would have won.  Props to my 'Horns and our new Coach Bowden!!

Ok - final topic... I just watched The Cove tonight after watching the series The Bloody Cove last night.  Seeing as how I love Whale Wars so much (and the season is over), the dolphins now are my new cause - I just wish I had the money, time and strength to be involved other than writing my opinion about it and signing the petition regarding it.  I respectfully request that anyone reading my silly blog please click on the widget below and sign the petition to end the dolphin slaughtering in Japan.  Thanks in advance.

Well, it's getting late - and my bed is calling my name.  Time to drag my new Old English Bulldog puppy out from under the couch and head that way.  Hope you all have a blessed Labor Day weekend - and send some prayers my way as well as my Papa's way... Thanks in advance!

Ugh!

It's been one heck of a week already, and we just passed the halfway mark.  My stepdaughter had been here visiting but went home this past Saturday.  We had some rainy weather, and man alive did my fibro flare up!  Yeah, well needless to say, pain and anger go hand-in-hand with my flare ups - don't know if it's the bipolar kicking in or just regular reactions to the change in weather causing the flares.  

I'm a little concerned because I'm having pain on/in my belly where my OmniPods have been placed in the past.  I really think I am going to call the company today and ask about this; I've called my CDE but have had no luck getting her to call me back so far.  I see her next week, but I'm so OCD that I want answers right now... rofl  Yesterday, when it was time to change my pod, I placed it on my right upper thigh - so far, so good.  I haven't caught it or bumped it on anything, which is a small miracle considering how clumsy I am these days.

In a bit, I'm headed to the chiropractor.  I hired a new one last week - nothing against my old chiro at all except for the fact that it was a rare occasion when he manually adjusted me, and the pain was not relenting at all.  =(  I took a chance going to this new chiro, but he has worked wonders in just the past week or so.  My mid-back still is painful and "locked up", but with each session, it gets a little better.  I enjoy the traction, and during my last visit, they did ultrasound to help with the locked up muscles and joints in my mid-back.  I'm hoping they will do it again today, and then I think I will go tan before heading home for a nap.

Lately, I've been feeling off kilter.  Little things get to me more than they should, and I've found myself either being angry or crying.  I'm keeping notes so that I can talk to my doc next time I go see him.  I'm afraid that my cycling is not changing much with my new med - I don't know if he will up the dosage or try something else, but there's got to be a solution out there somewhere.  I just know that I would give everything I possess to have one pain free, worry free, happy-go-lucky day.  I really think getting myself a horse would solve some of the problem, but there's no money for that, especially with Shawn's child support being raised over $300/month.  That in itself is stressful enough without thinking about the rest...

At any rate, my fibro has been flaring, and it's leading to some fluctuations in my bg readings.  It seems like one minute, I'm hypo - then the next, I'm hyper.  I can't seem to find a good middle ground.  My muscles are tight, and I'm irritable.  Something's gotta give, and I'm hoping that today, my adjustment will work out...

Y'all have a blessed day - hope you have fun plans for the weekend.  My nephew will be here this weekend, so we'll be spending some family time with him.  He's so adorable, and my sis-in-law and Pais are the best of friends, so I'm liking the photography factor real well right about now...

Living with an invisible illness: Fibromyalgai

I received this via a Facebook message and had to pass it on... after reading this, I was in tears.  Finally - someone understands!

Living with an invisible illness: Fibromyalgia

Well here goes......

If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. Because you didn't know how sick I was, you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you.

WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edinburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.

3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

WHAT YOU SHOULD KNOW ABOUT ME

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that Charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well or that I have been cured. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes...or their bodies.

Author unknown......

Challenges

These past couple of weeks have presented me with several challenges and led to more than a little frustration.  

Seems I ended up sick last week - dehydrated and all - and was in awful pain, which led to a frustrating day spent at the hospital ER before getting sent home late that afternoon.  I also had to set aside my Dexcom SevenPlus CGM for now.  The pain from my fibromyalgia was so severe and not getting any better that I had to take off my CGM and begin taking my old pain medicine again (which contains acetaminophen); part of my pain in the ER was due to the "pain management specialist" giving me medication containing ibuprofen, which is a huge no-no considering the severity of my GERD.  In a way, I miss the comfort that my CGM gave me because I always knew ahead of time when I was going low - but I sure am sleeping better without the alarms going off during the night and waking me up lol.

Fast forward two days, and there I was at the chiropractor's office enjoying my time with the TENS machine, after getting a much-needed adjustment, when one of my (now ex-) friends walked in complaining away to the chiro.  When I teased her about it, she turned around and rudely mocked me in front of the chiro and other patients, criticizing me for my "so-called" fibromyalgia symptoms and making fun of my  "so-called" pain.  Needless to say, our friendship is now over (after ten-plus years of ups and downs along with me putting up with the rude behavior that I chose to overlook until now).  I guess I've finally had it with my so-called "friends" being rude and downright nasty, and I'm standing up for myself - although not without some hesitation and fear, along with a quivering stomach and feelings of nervousness... I'm saddened by the loss of a friendship (which is also probably coming with a relative or two of mine), but I feel like I'm starting to regain lost ground and getting to re-explore areas of my life that I had forgotten about long ago when I started allowing others to set boundaries for me, rather than setting them for myself.  It's a unique taste of freedom that I'm tentatively enjoying the flavor of...

This week, I took a bigger step and established with a new doctor - yet another move that I feel like I've been forced to take - after seeing the same doctor for the past 10 years or more.  I really like my new doctor - but I'm not looking forward to talking to my old doctor about the change I've made and explaining why I made that decision.  However, after having an insulin refill refused along with a fibromyalgia medication refill refused as well, the time has come to stand up for myself and demand that I be given the treatment I've been paying for all these years.  I don't consider myself a hard patient to care for; I've waited four hours or more to see my doc without even one complaint or comment - but when a nurse takes it upon herself to refuse my medication refills "because she feels like I don't need them" without consulting my doc about it, especially with both of them being vital medications - I think it's my duty to step up and inform my doctor about what's going on in his office and why I've made the decision to see another doctor.  No use baby stepping around the issue when it's vital to my health (right?) - and I have no room for a nurse who is given the liberty of refusing refills using her own judgment without any action being taken in regards to her behavior.  My old doctor is already aware of her refusing to refill my insulin when I first started using my pump and needed more - refusing to refill my fibromyalgia medication  happened yesterday, and luckily my new doctor stepped up to the plate and refilled it for me.  The pharmacy has informed my old doc of his nurse's refusal to refill my meds as well, but I doubt those notifications are getting through since they are being faxed to the office and not emailed or phoned in to him specifically.  I'll continue to see him for annual exams as well as for pain medication needs (until I'm established with a pain management specialist out of town), and then my visits will gradually taper off to emergencies and annual visits only.  I feel like a part of my life is ending because I've known my doctor just about all my life and am friends with him and his family outside of his practice - but I don't feel right about having to call him when he is on vacation and off duty just because of the behavior of one of his nurses - and I'm anything but a troublemaker. (Consider me a little mouse in the corner, squeaking occasionally. rofl)

On that note, our family reunion is this weekend - and I'm swearing off being the family peacemaker this year.  I've gotten to the point that it is making me physically sick - along with adding unneeded stress to my life - and I just can't continue that role anymore.  I'm honestly disgusted with my Christian family members carrying on the way that they have in the past and think it's past time for them to act like the Christians they claim to be - walk the walk and talk the talk, so to speak - not just choose one or the other... (And for any family members who read this - instead of getting mad and making trouble over what I've written, come to me privately, and we can talk - don't call me out and try to make a fool out of me.  I WILL embarrass you if the matter is not handled appropriately.)

I hate that things have come to this point, but I guess the whole theme of this post centers on challenges we are presented with in life and how we handle them.  I can't continue the road I've taken in the past; I've got to start down a new path and worry about my health and my peace-of-mind instead of always putting others' needs and wants first.  The challenge has been put in front of me to be a role model for my child, and I want to show her how to stand up for herself while still being a loving Christian girl.  Lord knows I need all the prayers I can get, what with everything that's been going on lately...

Please send some prayers my way if you happen to read this - and thanks ahead of time for not making any hasty remarks or uncalled for comments... I hope you understand why I've chosen to handle the challenges placed before me in the manner that I am; thanks ahead of time for your thoughts and prayers.

More About My Uncharted Jungle...

Welcome to my blog, and thanks for visiting me here!  What you read here may not always interest you, but it is my intent to utilize this blog to share my own experiences about living with diabetes, fibromyalgia (FM) and chronic fatigue syndrome (CFS).   I have made so many friends online who share my struggles with these ailments, and this blog is dedicated to them - as well as to my husband, Shawn, and our daughter, Paislee - who have chosen to journey through these uncharted territories with me.  Thanks to each of you for being an important part of my life and for sticking by my side through thick and thin.

IMPORTANT NOTE:  Each person has their own struggles and their own journeys when dealing with diabetes, CFS and FM; my story is just a small part of the picture. (Just had to note that before continuing the journey...)

You've probably already read part of my story - but here's a bit more to get you better acquainted with me.  On October 30 of 2008, I was placed into the ICU on an emergency admit where I was diagnosed as a type 1 (insulin-dependent) diabetic, despite losing 116 pounds over the past two years. I was also admitted to the hospital in August and November of 2009 for complications related to my other diagnoses. I currently take 850 mg Metformin twice daily, 30 mg Actos once daily, use an OmniPod insulin pump (with Novolog) and wear a Dexcom SevenPlus CGM to help prevent severe hypoglycemia, as I am hypoglycemic unaware until I hit the 50s... I've learned the value of always having glucose tablets with me along with diabetes testing supplies; these things can be lifesavers!

In addition to diabetes, I have also been diagnosed with fibromyalgia, chronic fatigue syndrome, IBS, arthritis, bulging discs and pinched nerves as well as a heart murmur and take several prescriptions for treatment of these other ailments too.   With the discovery of a vitamin D deficiency and usage of prescription vitamin D each week as well as tanning, I feel like I've gained back some of the ground that I have lost in the past, although I still have many painful days... 

I've recently begun seeing a pain management specialist, since wearing the CGM no longer allows me to take acetaminophen.  I've lost some of the ground I had gained in the past when it comes to managing my pain; my fibro has flared off and on for the past month or so - but I have complete faith in my pain management doctor and know that eventually, we will get all of my pain issues ironed back out.  Once the pain begins to abate, my pain management specialist and I both feel like my chronic fatigue will taper back off to a manageable point.  My blood sugar is already on its way to being more stable and better managed - thanks in a large part to my CDE - who has shown me that life can be okay with diabetes as long as you know how to dose for what you choose to eat.  I've been able to attend family reunions, birthday parties and other events and enjoy dessert now - and that's priceless compared to the misery I suffered when sitting back and watching others eat dessert (and other carb-rich foods) in the past without me.

I was originally diagnosed with chronic fatigue syndrome and fibromyalgia around 15 years ago - back in the dinosaur days when these were really controversial diagnoses.  Their effects have come and gone throughout the years, but this bout is the worst ever.  (Maybe it's due to the wonderful aging process, lol?)  Thanks in part to a large number of folks in the medical community who have stepped out and spoken out about fibromyalgia and chronic fatigue syndrome since then - as well as to patients diagnosed with these ailments - these two syndromes are now being more widely recognized and accepted.  Still, the journey to reality concerning CFS and FM amounts to long distances in a small community like mine, where common practice is to sit back and suffer quietly and stoically.  I have run into several doctors over the past year or so who still refuse to admit the reality of fibromyalgia and chronic fatigue syndrome; due to their blinders, they've lost a potential patient.  I don't hesitate to step out or speak out about the reality of living with fibromyalgia and chronic fatigue syndrome, especially since they are not very well known diagnoses.  Instead, I have made it my goal to educate everyone I come across about the severity of these two ailments as well as the severity of diabetes and the toll all of these things can have on a person's life.

At any rate, it's been a pretty sleepless night - thank heavens for interesting programs on late night TV (and the re-run of Whale Wars, as I slept through tonight's episode originally)!  My family and I have plans for the first part of the day, and then a nap is in order sometime this afternoon.  I'll be back later to share more of my story and will go ahead and apologize now in advance for my bad days when all I do is complain...

My wish is that God blesses each and everyone of you today and in the days to come.  *gentle hugs* to all my fibro friends out there!