Friday, October 26, 2012
Tuesday, November 8, 2011
|Tilapia, banku and pepper|
|Dried gari and gari soakings|
|Fried yam with shito|
|Ga kenkey and pepper|
|Community 1 market|
Friday, November 4, 2011
Thursday, November 3, 2011
As far as organs go, the pancreas – when it’s working – is a superstar, and an ugly one at that. It's the Steven Tyler of body organs. In truth, I think it kind of looks like a turd. Yes, that’s it, a shitty turd; at least Alex’s is certainly that.
Wednesday, November 2, 2011
Tuesday, November 1, 2011
Today is the first day of November. You might say no biggie and it isn’t, unless you happen to live with a person who has type 1 diabetes, or any type of diabetes, for that matter. And of course, I do; my sweet 10-year old Alexandra was diagnosed with this mind-numbing, exhaustive, unpredictable, totally effed up disease a little more than three years ago.
November happens to be Diabetes Awareness Month, so, let’s dispense with the pleasantries, shall we, and become aware. Every day, in honor of Alexandra, I will throw a little something at you to get your brain juices flowing, to perhaps provide you with an "I didn't know that" moment. And if we spark a little empathy along the way, we'd appreciate that, too. Misery loves coompany.
Were you aware that Type 1 Diabetes is an autoimmune disease?
That’s right! It’s an autoimmune disease; that means when Alexandra was just a cute, scrappy, scrawny 7-year old, her body turned on itself. In the case of people with type 1 diabetes, the pancreas is the scene of the destruction. No one knows why it happens, it just does.
Oh, were you living under the delusion that my child did this to herself. Or worse, that I helped her to become a diabetic by plying her with candies and sweets, and forcing the television remote into her little hands and leaving her to become nothing more than a human sloth?
Nah, not me. Believe me if I had seen this thing coming, I’d have sold my soul to the devil and offered myself up instead. Let me repeat: No one knows why type 1 diabetes happens, it just does.
Thursday, September 1, 2011
Abby, Adjoa, Aiden, Ainsley, Alexa, Alexander, Alli, Amanda, Amy, Andrew, Anna, Autumn, Ben, Beth, Boz, Brandi, Brendan, Brooke, Brynn, Caitlyn, Caitlyn, Caleb, Cam, Cassandra, Cassie, Cayden, Chad, Chell, Coco, Colleen, Connie, Connor, Dani, Daniel, Danielle, David, Dean, Deanna, Eilish, Elizabeth, Emily, Emma, Grant, Hailey, Hannah, Heidi, Holly, Ian, Jack, Jacob, Jacob, Jamie, Jayden, Jenna, Jenny, Jesse, Jimmy, Jonah, Jordan, Jordan, Josh, Joshua, Justin, Kailee, Kailey, Katerina, Katie Jane, Kayla, Kerri, Kevin, Kyle, Kyra, London, Maddie, Marissa, Matt, Max, McKenna, Melissa, Mia, Michael, Morgan, Nathan, Nicholas, Nick, Nicole, Noah, Owen , Rachel, Rae, Ray, Reann, Richard, Sam, Samantha, Sarah, Scott, Sean, Seth, Sevaun, Stephanie, Steven, Tasha, Taylor, Tessa, Tim, Tommy, Tony, Trent, Treston, Trey, Ty, Tyler, Tyler, Zac, Zane, and Zoe.
As well as all of the other children (even those now grown) who have already endured so much more than any child should ever have to and for the parents who must stand by and watch, both in heartbreak and in awe.
So, as of today, I have set up a recurring monthly donation of $100 to the Faustman Laboratories at Massachusetts General Hospital in honor of my too sweet girl, Alexandra.
I believe that Dr. Faustman gives us our best closest hope for a real cure for type 1 diabetes. And while it’s not a lot of money, every little bit counts. If you’ve got a little spare money, too, I’m sure Dr. Faustman can put it to good use.
Tuesday, May 24, 2011
If you're already a follower of Too Sweet Girl in Ghana, then this is old news. I was recently invited to provide an essay for A Sweet Life's online diabetes magazine. It's an opportunity to raise awareness for what our T1 children go through here in Ghana that I just couldn't dismiss.
For the most part, that essay was well received by my family, peers and cyber friends. Most who responded know how difficult type 1 diabetes is to manage under the best of circumstances, and they were very supportive of my efforts, not only to keep my daughter alive and well, but to support the local children here as well.
But not everyone agreed. I received a series of four separate emails from a local (Ghana-based) “friend” (whom I’ve actually never met but who shall remain anonymous here), who was clearly appalled. My actual responses to her emails are in red, my thoughts (i.e. what I should have said) are in blue.
I read your artcle about your daughter. The love that you feel for her is overhelming. But I have to admit that if my daughter got sick, the first thing I would do is leave Ghana and go home. I think you are putting your daughter's life at risk by staying here. Lol
Anonymous Friend, thanks for your support. Lol :)
I think if we were in the states we’d be in worse trouble – without insurance who the hell can afford anything over there? At least here, the most important thing –insulin – is available and cheap, comparatively. And I’m truly blessed because I do have lots of moms and dads who help me keep Alex alive and healthy.
How’s things with you? Not going to the states anytime soon are you? I need an insulin pump brought in? ;-)
I sincerely disagree with you. I wa single and I could afford blue cross and blue shiled. I also knew people less fortunate than me who had help thourgh government programs. The very fact that you need something from the US tells me in my opinion that you should go home.
I also need a White Castle hamburger but I’m not rushing for the plane!
I have never met you and tjerefore I think it isn't fair for you to ask me to get you anything from the states,
Did she not see the winking eye icon?
But id I were you and my child was sick
Sick? Alex is sick?
I would get my ass home asap.
Say what you really feel, Anonymous Friend.
If your daughetr were to get malaria
been there, done that – twice!
on top pf diabtes or any type f viral infection her life could be compromised,
I think that no child from any country should be brough here to be riased
Don’t you have kids with you, here, in Ghana?
especially a sick one, Lol
Oh, that makes your bluntness (some might argue rudeness) so much easier to accept.
Did you have Alex through ivf?
No, none of my children were conceived through IVF, but what difference does that make?
I found that part of your story intriguing.
I was in richmond vA for three years, single and not well off. But I had blue cross and blue shield.
If you live in the U.S. insurance is a necessity – you can’t get prescriptions or visit a doctor without it. Here, I can walk into any doctor’s office or pharmacy and buy what I need, with cash in hand. One thing that’s important to clarify – people with diabetes or their caregivers see their doctor very very infrequently as it relates solely to their diabetes care. The burden, the onus,, the responsibility – 99.9% of the time – is on the patient or caregiver. In a year, we probably spend all of 6 hours in total with Alexandra’s doctor. The rest of the time, I am the expert. I make the decisions. Even Alex’s doctor has readily acknowledged that she doesn’t “live” with the disease as I do and defers to my decisions as regards her diabetes care.
I think that the US is better equipped than Ghana in helping all of its citizens when they are sick.
Obviously, you don’t read the CWD forums. You don’t know how parents fight with insurance companies to get the right insulin, to get adequate glucose strips, to get an insulin pump or a CGM. You don’t know how often they have to appeal the insurance company’s ruling. You don't know that they're struggling to meet ridiculous deductibles and co-pays. Don’t have private insurance there? Then you’re screwed. You’re at the mercy of Medicare or some other state run program. Maybe you haven’t heard but insurance companies and pharmaceuticals run the country there, and their goal is to maximize profits – it certainly isn’t to ensure that every citizen has quality healthcare.
I mean that sincerly in terms of quality of life and care.
Do you really not know what’s going on over there? Or do you live in a bubble?
I think the very fcat that you need an insulin pump from home speaks volumes.
Need? We don’t need an insulin pump. I want an insulin pump –who wouldn’t want the best for their child? But in the absence of one, she’ll go back to injections. She will still live.
Also they very fact that here your daugter is exposed to mopre viral infections and malaria.
What? The U.S. doesn’t have its share of infectious disease? Hasn’t you ever heard of the flu epidemic? It seems to occur at least annually there. Alex is one of the healthiest kids I know. Aside from the occasional cold she's never been sick, never been hospitalized.
I have to say I wish you all the best and good luck,
If it were me, I would be in a plane right now on my way home.
You’re not me.
I cannot wait to go home. I have lived in eight countries and thid place is the pits.
I can’t wait to go home either, I miss my mom. But bear in mind that not every city in the U.S. is better than Accra.
I do not mean to offend you in the least, but how can you go from rich to poor and give your kids a better life or a life with more opportunities?
I never ever said I was rich, and what makes you think that life would be better there and there’d be more opportunities? I follow current events closely because that’s my job; the economy sucks there, unemployment is near 10% and property values are in the toilet. Here, we’ve got a house (albeit under construction) that we own outright with no lien. I’m working from home doing something that I like at a wage that is acceptable to us because our overhead is low. My kids are getting a good education and lack for nearly nothing (McDonalds, Chuck-E-Cheese and Dave & Busters excepted).
My husband is Swedish, but Sweden is not a third world country.
My husband is Ghanaian, and Ghana is an emerging market.
I have friends here who have brought their kids here from other countries and for the most part they all want to go back to civilization.
I have friends from civilized countries that have lived here, left and want to come back here, in spite of everything. They miss Ghana. You’re overlooking the good here.
This place is the most backwards place I have ver been to.
Again, you are overlooking the good here. You should have seen it twenty-something years ago. Ghana has accomplished great things in the last two decades and is improving regularly albeit slowly. You really can’t compare Ghana to a developed economy; that’s an unfair comparison.
Those emails came in fairly quick succession yesterday, but I responded earlier today.
Obviously you don’t know much about the nature of diabetes so that you are reacting (over?) from a place of ignorance. A person with type 1 diabetes needs only access to insulin and the ability to check their blood glucose levels regularly. The insulin pump that my daughter uses (donated) and the new one that she will be getting (also donated) are merely delivery devices – they make life easier and provide us with the ability to closer match her food intake and her insulin.
In the absence of an insulin pump there are other delivery devices including an insulin pen or syringes, and we’ve got plenty of those. As far as my “asking” you if you were going to the states – no offense, but I ask everybody who has a tie to the U.S., you’re not special. And I am not asking that question because I’m so desperate to have the pump to save Alex’s life. No, I’m asking for someone to bring it because I don’t trust the post office. Do you?
You don’t know our circumstances, so it’s really not your place to judge me. You’ve lived elsewhere in the world. Besides the U.S., I’ve not. I know there, and I know here. And I know there is better if you have insurance, but we don’t have U.S.-based insurance. Can we get private insurance if we lived there? Maybe, but at what cost. I’m 50, my husband is 59 and besides our other two we have one child with a chronic, very expensive disease. If we could get insurance it will cost nearly $2,000 a month. A month! You can buy an awful lot of medical services here in Ghana for that, and not necessarily at Korle-Bu.
We have Ghana-based insurance that lets us use medical services at 37 or Korle Bu plus some local clinics, that’s fine. If Alex falls very sick – and in three years, she’s the healthiest of all my kids! – we’ll go to Korle-Bu because I trust her doctor to do well by her. She’s already had malaria a couple of times, and coped just fine. Interestingly, I know when Alex is getting sick long before she exhibits symptoms because of her blood sugar.
As far as her diabetes care, it’s not rocket science, its just monotonous vigilance and it’s my job.
If Alex had a disease that couldn’t be well managed here then I’d find a way to get her out of here, insurance be damned. But for all intents and purposes, aside from having a chronic disease, she’s a healthy, thriving little girl.
Yes, Ghana is a backwards place. But it is my husband’s country and he is who he is largely because of being raised here. I won’t disparage it for its problems; only try to make it better. This country is my children’s legacy, such as it is, but I’m not ashamed that I live here. Granted, some days I want to tear my hair out and scream, but I’ve been coming back and forth to Ghana for more than 2 decades, and I remember how bad it was and know how far Ghana has come.
Returning to the U.S. now is not in our cards. We have family there, yes, all of whom have their own lives, their own problems, we visit when we can afford it. Our home is here, our lives are here. We’re not diplomats or expat employees of some international conglomerate. We’re “retirees” in effect, making do with pension, consultant and freelance revenues.
And here is where we’ll stay. I know you mean well, and you’re entitled to your opinion, but unless you walk in my shoes, don’t judge.
P.S. I can’t wait to go “home” (for vacation), either. As soon as I get $6,000 together.
Tuesday, May 3, 2011
It was last year that Alexandra started pumping. That was only thanks to the generosity of many, many lovely people who donated the incidentals needed to begin pumping, including the pump itself (a gently used Animas 1250), the cartridges, various insets and a whole host of other stuff.
We’ve used it faithfully, although inefficiently, for the past 8 months or so. And a recent scare had me thinking we’d be forced to go back to MDI but it proved to be a false alarm (at least so far, knock wood). There’s a slight crack near the battery housing, which has been crazy-glued and taped, and we’re now protecting it with a rubber skin to keep it compact. Fingers crossed it holds up for a good long while.
Now, I can’t speak for Alex – she’s a kid who really just goes with the flow – but I love the pump. But because I was learning to use it on my own (for liability issues, Animas declined to help train me), I was hesitant to go beyond simple boluses for the longest time, and combo boluses were only recently added to our repertoire.
In all that time, I never availed myself (I mean Alex, of course) of the ezBG or the CarbSmart features of the pump. Part of the reason for that is because we read blood glucose differently here in Ghana; it’s read in mmol, whereas everywhere else is in mg. The pump features use mg, too. And I just couldn’t trust Alex’s conversion or math.
But then I ran out of strips for the (mmol) meter we always use, and had to rely on one of the donated meters. I had passed out a great many donated meters to Alex’s doctor at Korle Bu Hospital, but I held onto these because this particular meter (Freestyle Lite) isn’t sold here, so strips aren’t sold here either. And I have (well, now had) lots of strips and I just hate letting things go to waste.
So, when Alex started her Easter break (which lasts here for an interminably long 3 weeks!) we started to use the Freestyle meter and the pump together. With the carb counting that we already do, adding a bg and having the pump tell us if she needs insulin or not is a no-brainer. This is so easy!
I know most other CWDs use their pump 24/7. But because Alex is untethered she doesn’t have to. She attaches only when she needs to for boluses. And I don’t have to worry about basal rates, either (though I do give her a little during school because she’s a chronic under-boluser).
I can’t believe it took me this long to figure it out. Better late than never, though, right?
Thursday, March 10, 2011
So, the past week has been “exciting,” with two interesting, life-altering events occurring. I’ll tell you about the first one now, and the other a bit later.
First, I hit the half century mark on March 7th. We celebrated with a weekend trip to Atimpoku, which was very nice as it always is. The kids swam, we ate great food at Aylos Bay. We saw the twinkling lights over the Akosombo Dam at dusk. Alex caught a fairly large tilapia that got away when the line snapped as we were ready to take it off the hook. All in all, it was a perfect celebration. The only thing not nice was my allergies which were amazingly uncooperative – I was sucking Zyrtec down every 12 hours for 2 days to no avail. But that’s past and (today, at least) I feel great.
I am looking forward to the second half of my life. And yes, I do believe I will live to at least 100!
The other event? Well, nothing quite as monumental as a 50th birthday, but let’s just say I have the same degree of determination for the future and a great outcome. Now let me get you up to speed so you’ll know what I’m talking about.
Alex got her A1C results back the other day. (FYI, the A1C is the lab test that tells you the average glucose which “clings” to a person’s blood over the previous 2-3 month period, the lower the A1C, the better). Anyway, her A1C was worse (by far) than I expected.
I know. I know. It’s not supposed to be looked at like a report card. But, really, isn’t that something you say when your own child’s A1C is good and you’re trying to make another parent of a CWD feel better? It is a report card. I flunked Pancreatic Lab. Oh, I do great in Pancreatic Theory – A+ all the way. But the lab work is 99.9% of the grade, and there’s no A for effort.
So, yeah, the “life-altering event.” Alex’s latest A1C sucked at 8.5%. Far worse than the 7.5% we got in October. Granted, I think she’s had a growth spurt, and the hormones released during growth spurts generally result in higher blood glucose. She certainly looks taller and she’s gained 5 lbs (finally, she’s only been stuck at 60 lbs. for the past 2 years!).
But growth spurt or not, her numbers have been horrible. At school she doesn’t bolus enough so she’s invariably high between 11:00 am and 3:00 pm. We play catch-up boluses because she eats something and forgets to tell me she ate something. Or she refuses to eat the food we just bolused her for, usually resulting in a low followed by a high for overcompensating. As I said, her numbers have been horrible.
Oh, you noticed that there seems to be quite a few months between our A1C tests, huh? Yeah, you would. That’s ‘cause I’m avoiding Alex’s doctor. I kept hoping that I’d get her numbers more in line and that the A1C wouldn’t be this bad. Didn’t work.
Don’t get me wrong, I’ve said it before; Dr. Renner is a lovely woman. She won’t rant and rave or chastise me or make me feel worse than I already do. She’ll likely ask Alex is there’s anything she’s done (or didn’t do) that could have given this result. Alex will smile sweetly and then lie in her face and tell her no. To be honest, Alex could be a lot less difficult and a lot less demanding.
And I guess I could do a lot more demanding and be a lot less accommodating. And there it is. I’ve said it. The problem. I’m the problem. I do not crack down on Alex. I took for face value the words “she can eat anything she wants, as long as she has insulin to cover it.”
The problem is Alex does eat whatever she wants. She also drinks whatever she wants, which on too many days is a beverage called “malt,” a non-alcoholic drink that has 45 carbs in a single 12 oz bottle. If I send her to the store, she invariably comes back with sweets – “Oh, I’ll just take 1 unit (or 2 or 3 or whatever) for these,” and then she practically inhales them. A fight or a tantrum or some horrible scene ensues if I take them away. By the time that occurs, I’m too exhausted and stressed out to fight back and I give in. Bad mommy, I know.
You have to understand something, with Alex, there’s no such thing as moderation. But that’s all about to change, and Alex knows it. We had a little discussion, she and I and her dad, and this is what we’ve all decided.
- Alex will be limited to one malt or soft drink over the weekend only.
- Sweets will be considered a “treat” and I will dole them out as I see fit (and if she brings one back from the store, it will become my possession. Note to God, please Lord, let it be chocolate!).
- Alex will bolus when I say so (and not when she’s good and ready), and she will tell me when or if she has gone back for seconds.
- Alex will also always weigh her food out (even for seconds) and let me know carbs so I can figure the right amount of insulin.
- Alex will make an effort to check her sugar at least 3 times a day while at school (I actually bribed her to check 3 times a day – she gets paid only if she does), and take the right amount of insulin for what she’s consumed.
And yes, I know it’s a tall order for a 10 year old, but what else can we do?
I am disappointed and angry (mostly at myself) for the crappy A1C, but I am resolved that, in spite of that crappy report card, we will look forward.