Ugh!

So today was my visit with my doc... I've completed my antibiotics and am still sick. I have four nasty fever blisters on my face, and I feel horrible and bloated. My visit went pretty good, although I found I'd gained 30 pounds and not 15. What the heck is going on?! And by the way - tired of asking me how I feel or how I'm doing? I'm tired of answering too... I wish there wasn't a need to explain the things that are going on with me and my body, but there is and always will be...

Today's visit led to some testing and three new prescriptions as well as Sudafed for my "crud". I am taking acyclovir for my fever blisters - and anytime I get them, I have to start taking it again until they are gone. I'm sure hoping it helps. I also started taking Lasix today for fluid retention, especially in my lower legs and ankles. In addition, on Sunday, I get to drink some wonderful GoLytely - y'all pity me if you've never had to drink the horrible junk! I was supposed to take it today and go weigh in tomorrow - but now I will weigh in Monday morning (since I've thrown up off and on this afternoon and don't want to get dehydrated). I have huge hopes that my bloating and constant abdomen pain will go away after the dosing of GoLytely, as does my doc. I'm willing to endure the torture if it will help at all with that. My doc also sent me home with a really informative CD about fibromyalgia - I'm grateful to him for that, because it enhanced my knowledge of fibromyalgia and made me realize that I'm really not alone in all of this...

Speaking of being alone - I swear lately my theme song could be "I'm So Lonesome I Could Cry". It's hard for me to function half the time - and being normal is just a memory. I'm constantly sleepy and have slept past my alarm about five times in the past two weeks... I've basically put myself on self-imposed house arrest because it's embarrassing to go out in public with a bloated belly that makes me look nine months pregnant, beautiful fever blisters covering my upper lip, pain that brings tears to my eyes and bags under my eyes from the constant fatigue. I hate the looks I get from friends and acquaintances and don't even want to wonder what's being said behind my back... I'm starting to think that I will never feel or be normal again, and I could open a pharmacy in my kitchen where I keep all my meds... I'm now up to 12 prescriptions (including my three insulins)!

Since I'm in a sharing/whining mood tonight, I thought I'd amuse myself by talking about a few things that the fibro CD reminded me of and taught me. I'm also hoping that any of my friends and family that happen to read what I'm writing will be able to learn about this horrible disease and its impact on me - and thus be understanding of me, my moods and actions/reactions. I feel so misunderstood, and I'm afraid that I've pretty much chased my friends and family away because they are uncomfortable being around me - a wierdo diabetic suffering from IBS, CFS and FM. I can't eat a meal without injecting insulin, and I have to cart it around with me - along with my other meds - when I go to work, church or anywhere else. I also have to carefully plan my meals - even more so now that my doc put me on an 800 calorie/day diet in hopes of pulling my weight back off. At any rate, time to stop procrastinating and start sharing the things I've learned today...

1)Fibromyalgia is a disease characterized by generalized musculoskeletal pain; diffuse pain and stiffness/tenderness; chronic fatigue; sleep disturbance; depression/anxiety; headache; impaired thinking; irritable bowel or bladder; and "like having the flu all the time".
2)Approximately 80% of fibro patients are caucasian women between 35 and 55 years of age - and 2 - 4% of the population has been diagnosed with fibromyalgia. Diagnosis is often made by using lab tests to rule out other diagnoses because of the shared symptoms that occur with fibromyalgia - it often takes five years or longer for the diagnosis to be made.
3)Believe it or not, fibro is second only to osteoarthritis as the most common rheumatology diagnosis, yet fewer than 20% of fibro patients are cared for by rheumatologists.
4)There is a lot of controversy about whether fibro is real or only in the mind of patients because there are no objective tests to diagnosis it. Its causes are basically unknown, but fibro is thought to have an etiology of either augmentation of sensory stimuli processing causing lowered tolerance for noxious stimuli or a genetic predisposition triggered by physical trauma (usually illness or injury).
5)Effective treatment entails highly individualized multimodal treatment including cognitive behavioral therapy, exercise and medication including antidepressants and analgesics.
6)Patient education is the key to any therapeutic regimen though, because it is the patients themselves managing their condition on a day-to-day basis, finding what works and doesn't work for them on an individual basis.
7)In 1990, the American College of Rheumatology released a definition of the criteria that has to be met to be diagnosed with fibromyalgia. The criteria are a)at least a three month history of widespread, bilateral, upper and/or lower body pain and b)pain must be experienced in 11 out of 18 possible tender points. (There are nine symmetrical pairs of tender points spread throughout both the upper and lower quadrants of the body.)
8)Stress and other psychosocial factors exacerbate fibro symptoms.
9)Antidepressants are the first-line treatment for fibromyalgia because they simultaneously affect multiple symptoms including pain and fatigue as well as depression, anxiety and sleep disturbances. Tricyclic antidepressants are used off-label and are favored because of their sedating properties, as they can be beneficial in helping with sleep disturbances.

With that said, there's one more thing I want so say, and then I'll stop for the night. Please don't give up on me y'all - I'm trying to be as normal as I know how to be; it's just hard.

Contemplation

Tomorrow comes with a plethora of emotions - as do all future activities, to tell the truth. Not so long ago, I was as normal as normal can get (or so I thought). I lived my life never thinking of having restrictions that I didn't place on myself - me losing 110+ pounds over the past two years was my doing because I wanted to lose the weight and be healthier, plus be a mama that Pais could be proud of and a wife that Shawn could openly admire. Sleeping in and skipping breakfast and lunch was no sweat off my back; now I have to eat three times a day or up goes my blood sugar and then my insulin dosage as well to bring it back down. I could go and do things until I chose to stop, rather than having to stop the way I do now because of pain and exhaustion. I took so much for granted... But now, I have no choice but to place restrictions on myself, thanks to my diagnoses of type 1 diabetes, fibromyalgia, chronic fatigue syndrome and irritable bowel syndrome. Put all together, they are more than overwhelming. Heck, taken individually, they're still overwhelming - who am I to pretend they're not?!

At any rate, this Easter, things won't be as easy as they were last Easter. Without taking my insulin 15 minutes prior to meals or snacks (and upping the dosage when I chose to splurge and eat dessert or candy or chips or other high carb/high sugar foods), there's no sneaking candy out of Paislee's Easter basket... How 'bout some good ol' mashed taters with plenty of butter, cheese and sour cream in them or some red beans with a good chicken fried steak or fried venison backstrap? Even my mom has to adjust Easter lunch so that I can eat with the rest of the family... The rain that's begun to fall tonight also comes with its own challenges - as do most other activities... These are challenges that I have to cope with and learn to live with daily - at the same time, doing my best to educate my friends, family members and even strangers about the necessary evils of insulin and other medications to combat the effect my illnesses have on my body and mind each and every day. Think you're tired of asking me how I feel? Imagine my embarrassment of being honest and telling you just how bad things truly are - or choosing to be dishonest and answering with a quick, "Fine, and you?"

Tomorrow, I can eat some dessert (homemade chocolate cake with butter cream frosting; I can taste it already, lol) - but I have to pay the price by upping my insulin intake and hoping I have the right dosage - if not, I can end up with hyperglycemia or hypoglycemia, which majorly affect my mood and attitude and just plain ruin my whole daggum day! Did I add that I have a sinus infection for like the fourth time in six weeks or so? The darn thing seems to go away, and then there it is again! (Say hello to round four of antibiotics - and probably another steroid shot this week when I go visit my doc, which automatically raises my blood sugar and thus my insulin requirements. Ugh!) I can take the cough syrup my doc prescribed, but even that presents a challenge, as do most cough syrups and cold medications that aren't sugar free - because each time I take a dose, I have to follow it with insulin or pay the price by having a high bg reading later, along with a sorry attitude and "piss-poor" moods and behavior. I've got a busted knuckle on my right hand, and I have no clue what I did to get it - but it's been there for three weeks and still isn't fully healed. This time last year, it would have been gone in a matter of days instead of weeks.

This coming week, I have a follow-up visit with my doctor. I know he's gonna nail my hide to the wall because somehow, 15 pounds have crept up on me seemingly overnight. I know that not exercising is partially to blame for the weight gain, but it's so hard when my whole body aches and all I want to do is cry. I try to exercise and simply can't due to pain and fatigue... So, I'm going to talk to him about treatment options that I have and that somehow I can hopefully afford. Admitting that we're broke and can't afford things is humiliating and humbling; usually I make excuses or just simply don't make appointments for helpful things like chiropractic appointments, acupuncture and massages. Also, there are times that I feel so guilty for the cost of my medications, treatment and supplies - I feel like I'm robbing my family of things that they may not always necessarily need but just want, including weekend trips and vacation or even going to the movies or eating out with friends and family. Even buying Paislee a new book comes with its own challenges, because the $5 or so that it might cost could be applied to my necessary medications and supplies, so I have to budget for it and pray for no unplanned expenses.

I paid $37 for a large Frio wallet this past week because the Frio wallet will make day-to-day living easier. (I learned a hard and expensive lesson at Thanksgiving when I took my insulin vials with me - one of them froze, and since insurance had just paid for it - the other one I got had to be paid for without my insurance co-pay. Did I tell you that insulin is majorly expensive? So are the test strips and syringes, and I take three different insulins. Even with a co-pay each month, they still run me $120 for three vials - and that doesn't include the other eight prescriptions I take each month or other supplies mentioned above.) Shawn's hours at work have been cut in half, which has had a major impact on his paychecks - and now, just paying the bills is a sacrifice in itself. I find myself juggling what to buy each week as well as which bill to pay and when - it's so embarrassing to have to bow out of activities because we simply can't afford them - and so instead of telling the truth about us being unable to afford going to them, we usually blame our non-attendance on my health... Please don't think that by me writing about this that I'm soliciting donations or even pity - I'm not; I'm just venting about my frustrations and challenges that come with daily life.

There's one activity coming up in September that I'm really excited about - and that's the Brownwood Reunion. I'm going to visit with my doc this week in preparation of attending the Reunion and volunteering like I did last year. It's going to take some planning and preparation on my part - especially at meal times, since I didn't have to stop and eat or take insulin and meds last year. The snacks that will be available for all the volunteers won't be included in my daily diet - so I'll have to prepare by having my own snacks and meals that are deemed "okay", lol. I'm determined to volunteer again this year - so I'm going to start taking action early and pray that I don't have any flare-ups the week of the Reunion.

At any rate, thanks for listening to me whine if you've made it thus far. I guess I really needed to vent and get things off my chest. I'm so tired of having to whine only to Shawn - and I imagine he's tired of hearing it but is good enough not to tell me to shut my trap about it all. With that said, I'm going to contemplate on all I've said in this post and will try to come back later and update how things are going. By the way, I love the rain - but my body doesn't. Each front that comes in is felt in my joints and muscles; I just hope and pray that someday, I go into remission from the fibro, CFS and IBS. I swear there are times that I just want to hide out at home because I look nine months pregnant thanks to the bloating and other abdominal side-effects that accompany my IBS - as well as the constant fatigue that is persistent and won't go away regardless of how much or how little sleep I get.

Happy Easter, y'all! Praise God for all that He has given to us - and please don't take life or your good health for granted. If there's anything I've learned - it's that.

Getting to know me...

"Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma - which is living the results of other people's thinking. Don't let the noise of other's opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary." - Steve Jobs

Welcome to the jungle that is my life!

I am a 36-year-old mommy to a six-year-old kindergartner, Paislee, who is the light of my life as well as my best bud. She had heart surgery a year ago (November 16, 2007) for Wolff-Parkinson-White Syndrome (WPW) but has recovered well and is living a life with no restrictions and no meds. In fact, Pais gained 22 pounds and 13.5" in the year after her surgery! We are so thrilled that she has done so well - and her cardiologist said that after looking at her last EKG, you would never know that she had been diagnosed with WPW. Now, Paislee has yearly follow-ups with her cardiologist to ensure that her heart continues on its "healed" path. Yay!

My husband, Shawn, and I just celebrated our seven year anniversary this past year (November 10, 2008). He has a daughter, Kelsi, who turned 15 on February 16 of this year. She lives with her mom and grandparents currently - and we only have to drive about an hour and a half to see her. It's nice to have her so close again, as she just moved back from Kansas. My parents and grandparents live in the same town as we do, and most of Shawn's family live an hour to an hour and a half from us - it's so nice to have family that close!

Now - onto the reason for this blog...

On October 30 of 2008, I was placed into the ICU on an emergency admit. There, I was diagnosed as a type-one (insulin-dependent) diabetic, despite losing over 110 pounds during the past two years by practicing a low-carb diet and exercise routine. I currently take 20 units of Levemir at night (a switch from 20 units Lantus at night, which I took for the first three or four months after my diagnosis), and three to ten units of Humalog with each meal - although I have learned to adjust my insulin needs for my carb intake at each meal so that I can enjoy things like a yummy dessert, a cheeseburger and tots or other "no no's" every now and then. At bedtime, I take five units of 70/30 Humulin and use Humalog for a sliding scale as needed.

With the support of my primary care physician (PCP - aka Mike), I am practicing a 1400 calorie/35g carbs/25g sugar/high protein diet. I need to lose another 20 - 30 pounds to help stabilize my blood sugars and regulate my metabolism; they are the most stubborn pounds I think I've encountered in my life! My blood sugar readings have dropped drastically since I obtained permission from Mike to practice this diet plan, except for unexpected spikes that I believe are brought on by pain, hormone fluctuations and other symptoms from my fibro/CFS/IBS diagnoses. I also was able to bring my A1C down from an initial 14.7 to 5.8 in two and a half months!

I do not follow the American Diabetes Association's diet or other diabetes diet plans that advise 30g - 45g carbs at each meal, as I have found that higher carbs raise my blood sugar levels in a big way as well as my weight, even if I stick with lower calories. Instead, I try to keep my total carb count for the day under 35g, and it has worked very well in stabilizing my blood sugars throughout the day as well as giving me lower readings more consistently.

I try my best to follow Dr. Bernstein's methods (see the recommended reading section to the far left) - his books are fabulous! I also take supplements which have been approved by Mike as well - and we talk openly about our feelings in regards to supplements, medication, diet and controlling both my weight and diabetes. He gives me a lot of support, which I am grateful for. (I promise to discuss the supplements I take in further posts...)

In addition to being a type 1 diabetic, I have recently been (re)diagnosed with fibromyalgia, chronic fatigue syndrome (CFS) and irritable bowel syndrome (IBS). (My initial diagnosis was 15 years ago, when the diagnoses of both fibro and CFS were pretty much unaccepted in the medical community, as there were arguments of whether they were "real" diagnoses or "all in the head" of folks diagnosed with them.) Even now, fibromyalgia and CFS are hotly debated - but awareness of these diseases needs to be as widespread as possible so that everyone can understand their impact and just how much lives are turned upside down for those unlucky enough to have those diagnoses.

To be totally honest, the pain from my fibro has been overwhelming and causes me a lot of anxiety. I have been prescribed .5mg Xanax three times daily to help deal with this anxiety, as I have been diagnosed with generalized anxiety disorder (GAD). I have found that it helps to keep an Icy Hot rub-on stick both by my bed and in my purse to help ease the pain from the muscle aches and spasms brought on by fibromyalgia. For my fibromyalgia, I take 600mg of Neurontin (gabapentin) three times daily (Cymbalta worked well for me but was too expensive; Lyrica was not effective at all), 100mg of Elavil at bedtime, 10 mg of Flexeril three times daily and Lortab 7.5 mg four times daily. I also take Bentyl four times daily, Reglan four times daily and two teaspoons of Konsyl daily for help with my IBS woes. In addition, I take 3 mg melatonin at night to help with sleep issues brought on by both fibromyalgia and chronic fatigue syndrome. I have undergone acupuncture therapy, gotten massages and chiropractic adjustments and plan to continue these on a regular basis when our budget allows me to do so. All of these have helped to knock my pain levels down from unbearable to tolerable as well as helping me to sleep more soundly and be more relaxed.

During my spare time and on my good days, I enjoy playing with Paint Shop Pro, photography, reading, spending time with my family and friends, and playing with our three cats, three dogs, our puppy and our horse. I volunteer in our community with several different organizations, including 4-H, which has always been one of my passions. During the spring and summer months, I enjoy gardening and yard work - along with bird and butterfly watching, as our yard seems to be a magnet for them. I also enjoy learning all I can about diabetes, dieting/carbs, CFS, fibro, IBS, anxiety and exercise so that I can begin the habit of leading a healthier (and hopefully a happier and less stressful) lifestyle.