If You Only Knew

The last week has been extremely hard for me, my neuropathy is on a massive overdrive kick to the point I am even experiencing new pains that I did not know a person could have. I spent today in so much pain it was ridiculous, I even tried to hide the pain from everyone that cares about me and loves me because the true extent of the pain is almost unimaginable right now. I was listening to a song from the Inspirations called “If You Only Knew” ad I was crying during the song. I was not crying because it made me think of my dad who I lost last May but because I was praying that the chorus would be about me.  The words are “If you only knew, I'm just going home, your prayers have been answered, my sickness is gone. Things look much better from Heavens view, the sun always shines we're having a good time if you only knew.” Your prayers have been answered my sickness is gone, if going home is the only way please take me home.

Now please don’t think I am considering suicide or something equally as stupid, it is just the thought of no longer having the pain that plagues my life. That thought of painless bliss that reminds me I will not always have this pain, there will come a time when I leave it behind and I will be home where pain will no longer have a hold on me.

I get to go for a sleep study here soon, hoping they will figure out why I don’t sleep either. Even with a c-pap on I can stare at the ceiling all night. I lay there in pain counting dents in my ceiling tile every night, nerves firing off in my body with every number that I count. If you are out there experiencing this pain and you feel that you are alone please take courage in knowing there are others. We may not all speak out about what our lives are like but some of us do, and just like the others I am here for anyone who ever needs an ear to listen to them.

While I do want to go home I know I am here till His work in me is done, this may take a while as I am still meeting people who suffer with our disease who feel they are all alone. Remember you are never alone. Sorry for what seemed to be a bad post, it was a pain vent, one that allows me to still be here for everyone else while releasing some frustration.

Meter Rant

Hello everyone, I want to give fair warning this is not about living with the disease though it is about living with the disease. I want to vent or rant or whatever you want to call it today. For the last three years I have been on the Animas® One Touch® Ping® as my insulin pump. I have heard many people speak badly about it and others speak good; though my personal experience has been great with it. Here is the rant, my wonderful insurance company has decided to no longer support the One Touch® Meter and test strips, but they are still supporting the pump. This is just great the meter that syncs with my pump directly for dosing communication is no longer supported, let’s just rip the pump away and put me back on shots it would be less complicated than what I am going to have to do now. As if the bag I have to take with me with emergency supplies is not large enough with all the glucose tabs, dextrose pens, spare insets, spare cartridges, extra bottle of insulin, site dressings and a whole host of other things; I now must carry two Glucose meters. The first is this new brand that has been jammed down my throat by the insurance company; the second is my One Touch®. Now if I wanted to spend over $200 a month buying my own test strips I can very well keep using my current meter, but as hard as times are I am lucky to pay gas at times let alone $200 in test strips.

So now I have the new meter that I take my glucose level on, then I have to pull out my old meter and use it. This meter monitors how much “insulin on board” I currently have, for those who do not know “insulin on board” is just a way of saying the amount of insulin that is left in my body since my last bolus dose combined with my normal hourly dose. Each hourly dose is distributed a micro dose every three minutes to equal my actual hourly dose. I enter the amount of carbs I am about to eat, then enter the glucose level from the other meter, then the One Touch® tells me how much I am to bolus dose to keep my insulin in line with my carbs and current glucose level. Then here is what I love the meter communicates with the pump via wireless communication and transmits all the entered information, then actually delivers the correct dosage. I do not touch the pump it stays in my pocket. I want these insurance people to live on what they allow for us as diabetics, we are sort of the outcast of society since we are the biggest insurance cost according to insurance companies. I guess that means we do not deserve the right treatment. Sorry rant over.

Riff-raff

“Riff-raff, street rat, I don’t buy that. If only they’d look closer. Would they see a poor boy? No siree they’d find there’s so much more to me“ (Rice, 1992).

Have you ever felt this way? What if we change the lyrics a little? Overweight, lazy, I don’t buy that. If only they’d look closer. Would they see a Diabetic? No siree they’d find out there’s so much more to me. You can insert any disease or affliction you have into those lyrics, are we truly what our issues make us? Sitting at your house sulking over whatever ails you will never get you far in life. Does our life have a chance of being more, yes it does!

We get up every day to face a world that seems to never understand our issues. We take that first step off the bed and have that instant sensation of pain shoot from the bottom of your foot to the top of your head, the cringe that follows, and the possible muscle spasm all from stepping on something… no all from just stepping. We do not have to step on something to have pain it is just there day in day out, it wakes us in our sleep and sometimes (a lot for me) prevents us from sleeping altogether.

I got into a debate this evening with someone over pain levels as they stated I seem to be in a lot more pain lately. This is sadly true, it has been discovered that the Gabapentin that was dulling the pain of the Neuropathy was making my Diabetes worse at the same time. On the medication I averaged a 360 mg/dl (20 mmol/l) off the medication I am averaging a 135 mg/dl (7.5 mmol/l). The problem is I now bottom out into a hypoglycemic state daily. So on the meds I have a high BG and low pain, off the meds low BG but HIGH pain so which life is better.

Back in January I stated I was going to take a break due to everything and I needed to really find myself again. I have come to a point where I know the Neuropathy and the Diabetes are out to end me, but I will not back down and let it win. I must fight because I have too much in this world worth being around for to just give up. Where do you see yourself in your daily battle with this disease?

Update on life thus far.

It has been a long time since my last posting to the blog. I have been up and down many shaky roads in this time period. My diabetes has developed into more of a pain in my side than I think it is worth, however I am still not letting it defeat me. My blackouts have officially been diagnosed as a seizure disorder. I have learned all new forms of humility over this last summer, I thought I knew what humiliation was all about last year as I twitched and convulsed from the Neuropathy in the middle of Kmart. Just about a month ago I went to the grocery store with my mother; since I am no longer able to drive I try to get out whenever someone is willing to take me somewhere.  Well in the middle of the store I started to smell ammonia around me; I have come to know this as an aura preceding a seizure. I made it to a bench in the back of the store just about the time I sat down the seizure started. 

Now I have also learned I have two types of seizures, the first and most serious is “cranial seizures” where I just pass out cold to the world. The other all my muscles seize in a large contraction, not convulsive like a grand maul but constrictive where I tense up so bad I cannot move. Ok with the description aside let’s go back to my local grocery store.

I sat there on the bench frozen in a constrictive seizure. I could see everyone pass me and could not ask for help. I sat there almost catatonic watching everyone pass by while my cell phone was ringing off the hook, my mother was trying to find me in the store as she was up front looking for me. I was trapped, seeing the people, wanting to scream to get their attention and yet wanting to cry because of the humiliation. No one ever stopped to see if I was ok, not a customer or an employee, so I sat all to myself locked in my own head.

So when I say I am tired of my disease and humiliation, I hope you understand.  I am not giving up the fight I am however taking a temporary pause.

The loss of my own dignity, the humiliation, and society’s general lack of knowledge on the subject has caused me to change my Degree focus for my Bachelors. As of today I started my Bachelors of Science in Human services and Management, this will allow me to become a healthcare social worker. Someone who can listen to a patient and really understand where they are coming from; not nod their head and say it is all in your mind.  I have to stop here or I will go off on a tangent.

Outer reflections of our pain inside part 1

What happens in spring that makes everything come alive? Is it the warmer weather, the longer days of sunshine? I guess I mean what makes us as Human beings become more alive, all winter long I saw people go about their business and yet they all looked like they were numb to the world. Once spring hits you see people smiling, walking around greeting each other like life is beautiful. I know right now you are wondering how is he going to tie this to his blog post, well I believe they suffer from seasonal neuropathy. Is this a real disease, no but what it has done is cause a numbing of their emotions to the winter season and they all seem to draw inwards.

We as Diabetics with Neuropathy can have a similar condition, except ours is not controlled by a season. We do not need winter to appear to feel numb; Neuropathy can make us go numb at any point of a day. Our lack of feeling can cause us much pain should something happen that we are unaware of. We also have this emotional numbness at times; some may call it depression, numbness, apathy.  We deal with so much pain and other irritants that sometimes we just shut down completely and do not want to speak to the outside world.

I went on a church outing with my son a few weeks ago and while we were out I apparently hit something very sharp with my left leg. One of the guys asked me how my pants leg got ripped and then said the words I dread to hear “Are you bleeding?” Wonderful Neuropathy numbing strikes again; I never knew I got cut let alone the fact that I was bleeding and enough to stain the color of my jeans. So I am curious to find out what you all believe Pain vs. Numbness from the Neuropathy which is better?

Send me a response let me know what you feel. I am really interested how everyone feels about this. Do you feel the pain of Diabetic neuropathy is better to have than the numbness?

Reflections and Dreams Part 2

I sit here this evening thinking about all the items I want to discuss with everyone. I have a listing of differences in T1 and T2 diabetics, along with all of their similarities. I have found useful information on Lancet usage that when I first read it I had to admit I was guilty of the issue. Thinking over all of these plus about seven other new articles I would like to post I decided to do a little reflection and some looking forward.


What was 2010, was it a good or bad year? Well I started out the year with a determination to get healthier. Life is sort of funny in that aspect, the harder I tried to get healthy the worse I actually got. Through the first few months I worked hard at it and had dropped from over 330 lbs. (149.69 kg) to just a little over 290 lbs. (131.54 kg). This is a great way to start out, I was feeling great and my energy was almost unstoppable then the brick wall came. Oh, I don’t mean the diet wall I mean the laying on a ground twitching out of control wall. The unable to walk around my own home because my feet went from fire to needles in 0.01 seconds; say hello to my new best friend Neuropathy.

I know you are sitting there going “best friend,” do not worry I have my reasons for saying this. Have you ever had something bad happen that you turned to good? Well this is it for me, if it had not been for the Neuropathy I would not have become active in my community on Diabetic education. I would not have started a blog or met people from around the world who either have this issue, or a family member does. My respect goes out there to any one with Diabetes or Neuropathy, but I must bring four individuals up.

First of all Lee Nevitt, thank you for all you have posted over the year regarding your fight with our new partner. Your story and determination are a great example of never letting the Disease rule your life, Thank You man. Please visit Lee’s blog by Clicking Here .

To Kate and Demarco, I am not sure what I could say to show my appreciation for you both. Demarco the Strong is what I call him; he is a young man also struggling with Diabetes and Neuropathy. I posted his story last year and I go back to it at least once a week. I sit here when the pain is the most intense and I read his story and decide if this young man can keep going and keep trying so can I. Kate, you have been an inspiration to parents of diabetics everywhere. I have seen through your posts and your comments to others how much you care and how much they all care for you.

Last but certainly not least is Bec, view her blog by Clicking Here. You have been great to chat with when those opportunities had arrived. Your guidance when I first started on my insulin pump was great. I watch as she goes through each treatment for the Retinopathy another cousin of Diabetes. I have early stages of Retinopathy and while they do not seem like wonderful treatments, to be honest they scare me lol, I know by seeing someone else go through I can do it also.

The year ended with some major milestones and some major setbacks. With everyone I have met and all that I have done, I believe that even through the pain and the being ridiculed, and the “oh it is all in your head,” I had a great year.

The year ahead is starting to look good. On April 10th 2011, I will be hosting Galesburg’s first Step out for Diabetes. This is a walk to raise money and awareness for Diabetes. If you are in the area come on out, send me a message here and I will get you the directions. I will be meeting soon with one of our local Hospitals and making arrangements to take the helm of their Diabetic support group and try to reach and teach here in my own community.

I do apologize as I missed an important group that has helped me this last year. The folks and fellow Diabetics at Diabetes – The Patient Experience have been great. Please visit them by Clicking Here.

For tonight I believe we will stop at this. So to all you wonderful Diabetics and D parents out there remember this. No matter what the previous year brought you have the ability to set the outlook of the year ahead.

Short Break for laughter

Comedy happens in our lives when we least expect it. This past Saturday 1/8/11 I was cooking dinner for my family as we had a birthday party for my son who turned eight years old. I am rushing around my small kitchen trying to make ribs without a grill. So I improvised and boiled them then placed the bbq sauce on the ribs and placed them in the broiler to cook off.


Here is where life takes its twist. I realized we were a half hour from eating so I took my blood sugar using my One Touch Ping and then proceeded to dose myself from the Ping to the Pump. Take in mind I was still cooking, so the ribs had to be turned and the other side of them needed bbq sauce applied, and sure enough I dropped the meter right into the pan on the oven rack. I of course promptly grabbed it. While I was freaking my family was dying with laughter. The meter was sauced and the bbq was up into the test strip area. It was toast, so Sunday I called One Touch and the lady on the other side could not control the laughter either.

While I was a little irritated at myself for trying to rush and do everything and then causing the issue; her laughing only helped to irritate me more. I work in customer service daily and you are not supposed to laugh on open mic at the customer. On the other hand, what can you say when a customer calls in going “I ruined my meter due to user stupidity.” “I apologize sir what happened to your meter?” ”You did WHAT? LOL HA HA HA ROFL.” Ok after all of her laughter she explained that this is not covered under warranty, take in mind I knew this very well. She ended up thanking me for making her Sunday at work and for giving her a story that is so ridiculous that it had to be true. Then she gave me a courtesy meter which arrived on Tuesday this week.

To top the Saturday night off for me, I manually entered the BG into my insulin pump and set my bolus delivery. Fifteen minutes later I was taking a nose dive. No focus, shaking, sweating, I could not stand any longer. My legs were weak and I collapsed into the chair. I grabbed some cookies from our cupboard (candy Kane cookies from Archway) and ate a few to try and help raise the sugar levels so I could function. I did not stop to check this new item in my house first; it had coconut oils in it. So in a bit I am feeling good on shakiness, however my tongue is now swelling due to my allergy to coconut. It seems humility was the lesson of the day. My body made sure to remind me it can bring me to halt. Well everything was treated and my dinner made it to the table almost an hour late, but it was a success even with it being late.

So why share all of this on a blog about Diabetes and Neuropathy you may ask. Well it is to show everyone that our friend Diabetes can bring comedy into our lives. No matter what happens we need to ride out the highs and lows and sit back and laugh at life and yourself.