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Today is the first day since we started our visitation agreement that we’ve had to cancel on the little guy.  Hubby’s sick, and the little guy tends to pick up sick like pocket change.  It’s also the first time I’ve seen him fight and cry because he didn’t want to leave.  It’s the first time Hubby has seen him fight and cry because he wanted his daddy.  It was heartbreaking, but it was a decision that had to be made.  It took me a while to convince him that his son will not hate him for making him go home, and I can tell it bothers him still.  We’ve fought really hard for what time we do have, and deep inside it’s still not enough for Hubby, but it’s a start.

We knew there would be struggles when we started this visitation pattern.  We figured the little guy would cry for his mom and his toys, and he did.  We figured it would take some time to adjust to a new house with new rules and an entirely new environment, and it did.  Some of that anxiety still hasn’t worn off, and it will take a lot more work to make this routine, but we’re taking it one weekend at a time.

We don’t have the little guy overnight yet, and maybe that’s part of the problem.  As soon as he starts getting comfortable and relaxed it’s time to leave.  I’m hoping that as this arrangement evolves I can do as well as my father did rolling with the punches.

Today reminded me of when I was seven or eight.  I was too sick to leave home for Christmas, and I was devastated.  I was a little more equipped to understand that the little guy is at four, but I was still highly upset.  My dad came over and brought my presents, and we had dinner together, but there was one thing he hadn’t brought.  That was the year my dad had bought me my own bed.  After years of sleeping on a fold out futon, I finally had my own bed at his house.  He had picked it out just for me and set it up for me to find on Christmas.  Of course, I didn’t know that.  I was just upset that there was this special present my dad had failed to bring with him.  I moped for days until I was finally able to go see it, and I finally understood why that particular present hadn’t made the trip on Christmas Day.  I felt a little foolish for having been upset, but I was seven.  I wasn’t going to admit it.

I wasn’t much older than the little guy is now when I started visiting my dad and his parents.  It was a huge adjustment being away from my home, my room, and my mom.  I’d pack as many toys and dolls as I could and lug them to my dad’s house for the weekend and try my best to set up my room there to my liking.  I know for a fact I was difficult at times, and as I grew it got more routine, but there were always new challenges.  There were always weekends I wanted to spend with my friends or rules I wanted to bend.

When my mom passed away I felt that same uprooted feeling as I lost the home I knew for good.  It was an extremely rough transition for both of us.  I had to learn a new life and a new way of doing things, and my dad acquired a teenager full-time.  We had clashes because there were parts of each other we didn’t know very well.  We also had a lot of good memories, and it got me through some of the roughest years of my life.  One of the hardest things I’ve ever had to do was leave my father and move to Philadelphia.  I know he hated the idea, but he never told me I couldn’t.  He never told me I shouldn’t.  He let me live my life, just as he always has.

I know it bothered my dad at times, but he never showed it to me.  He never gave up on me, and I never felt like he wanted to see me any less.  He was always there on the other side when I stepped out of a bad attitude  as a teenager or off of a plane as an adult and back into a daughter he recognized.  He’s always supported me in all my decisions and lifestyle choices whether or not he agrees or understands, and he’s always the first one to remind me I can always come home.

When I look at how upset Hubby gets when he can’t see the little guy or when he feels he’s letting him down, I see how much he wants to be a good father.  Part of that means knowing how to make the hard decisions and sacrifices.  I know he wanted to see the little guy today just as much as the little guy wanted to see him.  I know how much it hurt to see his son cry and not be able to hold him to make it all better.  Today I saw my husband be a father. He told me later he wants his son to see him as strong.  To me, he was.  To the little guy, he always will be.   More fathers should be this way, no matter what the situation.  I’m really glad mine was.

I love you , Dad.

Go now, love your father, whoever that may be for you.

Aloha

Disclaimer:  I debated writing this today.  I’m in a pretty thick fibro fog, which makes organized thought a rough task.  I haven’t written much lately due to a quick but necessary move and a short stint in the hospital, so I decided to take a chance.  Forgive the slight leaps and jumps.  This was important.

As far as I am concerned, we live in a time and place where medical science is at least slightly more than trial and error when it comes to diabetes, that is, unless the patient happens to need hospitalization.  The problem is not lack of knowledge, it is lack of education on the part of most doctors and nurses.

When I first met my current Internal Medicine doctor she admitted she lacked specific knowledge on diabetes and referred me to an endocrinologist for anything diabetes related.  This seems to be a general condition of doctors treating patients in any hospital across America, and believe me, I have been in enough of them to know.  In the past I have had hospitals take me in then refuse me insulin until my blood sugar was high enough to need substantial correction.  When I protested that I did not enter the hospital with high numbers and that their methods were less than logical, the nurse said to me, “I know, my boyfriend is a diabetic, and that’s how he does it too.”  No, honey, that’s how every diabetic on the planet does it.  Only when I refused to eat until I was medicated or allowed to speak to a doctor was I given anything.  The doctor told me the policy was based on the unlikely possibility that I would crash in my sleep and never recover.  Even unconscious you can fix a low blood sugar in a  hospital, and it would have taken a lot more than what I needed to put me in that position.

On a recent trip for a viral infection I resorted to hoarding juice and sneaking in my own testing supplies to self-treat.  Let me assure you, this is no easy task when one is half conscious from a stomach bug.  Still, if I had not taken my own measures I would have not been able to fix an extreme low that was ignored for almost an hour.  We cannot let this kind of  situation exist.  How many patients have not healed or been kept in hospitals for extended stays because their diabetes is not being properly managed by the people charged with caring for them?  Then to have them tell me I need to just trust the professionals who have time and again left me in worse condition than when I started because they have the big fancy titles, degrees, and several years of overpriced education is ludicrous.  Prove to me you really deserve my faith and you will get it.  Deny me insulin based on some protocol based in fear of far-fetched risks and you will not.

I really have no idea how to solve the problem, I just think it needs to be  brought to the attention of anyone and everyone who will listen.  Diabetes may be ever evolving as far as treatments and care, but the basics have not changed.  It is imperative that hospitals start paying attention and educating their staff.  I am tired of being approached like a bad child and lectured like I have no clue how to take care of a condition I have had for almost two decades by people who keep making me sick.  Does this make any sense to you, my friends?  Do you have any similar stories to tell?  Maybe we can gather them up and send them to somebody who can do something.  I fear, more than likely, that person doesn’t exist and we will have to make our own change.  Either that, or start hoarding those little juice cups that come with breakfast.

Go now, readers, and test your blood sugar.

I got the inspiration to start researching the GFCF (gluten free casein free) diet from Jenny McCarthy of all people.  I had finally picked up a copy of Mommy Warriors and sped through it on my way to Delaware a few weeks ago.  It amazed me how closely the physical ailments kids with autism resemble those experienced by diabetics.  If the diet helped them recover, in some cases almost completely, I wondered how it could help me, Hubby, and my stepson.  We all have diabetes in different stages of evolution, the baby especially.  At this time he’s in a honeymoon period, which means occasionally his pancreas still produces insulin.  It struck me that this diet might prevent further damage of the beta cells that are responsible for insulin production.  What I found after a few rounds of Google-tag was amazing.  Why was it, in the seventeen years I have been a diabetic, that none of this information had been given to me?

My first search centered around the link between diabetes and autism, which is closer than one may think.  Many children diagnosed with autism will eventually be diagnosed with diabetes, as both are now identified as autoimmune affective disorders.  Research has shown that this continues to be the rule, not the exception.  What concerns me more is the rate at which the number of cases where this is not the case is falling.  Something has to be done, but how?

I continued my search with the effects of gluten and dairy on diabetics.  I had never imagined I would find more results than I could read in a day.  As I sifted through the various articles and holistic healing sites, I was certain that this is something we needed to consider, and soon.  Not only are most diabetics gluten sensitive, there is evidence that most diabetics have a weakened ability to breakdown grain and gluten, causing damage to the digestive tract.  Further sensitivity is often caused by casein, which is found in the milk of A1 cows, which is also attributed to “leaky gut” and the initial cell damage that causes diabetes.  There is only one dairy in the United States that does not use these cows.  All of these factors combine to support a theory proposed to me by my high priestess, who feels I may not be absorbing most of the vitamins and nutrients from the food I eat, which would definitely cause a majority, if not all, of the symptoms I have experienced since last year.

My final search centered around vitamins and herbs.  We already prescribe to a hearty collection of herbs, but all we take in terms of supplements is a multivitamin.  Maybe, I thought, if my high priestess’ theory was correct, I needed higher dosages given in intervals instead of all at once in a multivitamin.  There is no supplemental panacea, but what I found was a cocktail of several vitamins, enzymes, and probiotics at multiple intervals to aid nerve function, glucose tolerance, and carbohydrate metabolism.

Now that I have all this information I am in the process of learning how to properly use it.  Hubby seems onboard with switching to soy milk for him, almond milk for me due to a severe estrogen sensitivity, and gluten flour in the breads and cakes I make.  It won’t be an easy change, but in the end I think it will make a huge difference in our health and better role models for not only my stepson but for the other children we eventually add to our family.

I am determined to do more than sit here and let my condition rule me, and I can not sit and wait for the health system to figure out what to call it.  If this helps, we will all benefit.  I will finally be able to go back to work, and we will be able to get on with our lives, continue to build our home together, and eventually start a family.  I will do whatever it takes to get back to normal, and you, dear readers, will be kept up to date on the progress to share my path to new health every step of the way!

~Namaste~

It started a year ago. I had worked three double shifts in a row, and I contributed the lull in energy to exhaustion.  My blood sugar was not low, and I had eaten fairly well that day, but something was making me feel weak, shaky, and fatigued. Three days later the feeling had not yet gone away, so my husband and I headed for the Emergency Room at two in the morning. By the time we reached Pennsylvania Hospital in Philadelphia I could not walk on my own. I was triaged and taken to a tiny curtained cubicle of a room where tests were run while I slept and Hubby read. Several hours later those tests came back with normal results, and I was discharged still unable to walk on my own. We felt helpless, but we were told I was in no imminent danger and that the ER had done all they could do. They were terribly sorry. From there the symptoms mounted. I experienced severe muscle pain and paralysis, fatigue, insomnia, migraines, brain fog, menstrual irregularity, weight and appetite fluctuation, weakness, extreme insulin resistence, and vertigo. My hair stopped growing and started to break, and my skin became severely thin, causing me to bruise and bleed on contact with even the slightest pressure. My heart rate began to average in the vicinity of 121, and even the shortest activities winded me. My temperament changed. The smallest problem would seem insurmountable. I would cry constantly, and I became irrationally and violently angry without warning. My marriage, my household, and my job were threatened by my worsening condition. A year later we have no more answers than we had when this ordeal began. Each test that comes back negative is added to the litany of diseases and disorders I do not have, which is a blessing and a curse. I have been tested for everything from Cushing’s Syndrome to Lupus, from TB to Addison’s, and still we have no clue why I continue to be sick. I have been in the hospital several times where they have accused me of being delusional, blamed all my symptoms on diabetes, or blatantly called me a liar. My husband has had to come to bat for me over and over as one of the few witnesses of how severely this has affected my life. I am still unable to work a full-time schedule, and our bills continue to climb as a result. People around me act like I just refuse to work, as if I like having to choose between groceries and rent. I was not surprised recently when I received the official “giving up” diagnosis of fibromyalgia. I was put on Gabapentin, which turned me into an instant zombie. Then I was put on Cymbalta, which helped the pain and emotional symptoms only for a short time. I am soon to be pawned off to a new team or specialists. I will see a cardiologist, a rheumatologist, and a neurologist before I am sent to a clinic for people with unidentifiable conditions. This post is NOT a ploy for pity or attention. It is an assurance to those who know me that I have not given up. Part 2 will give you a glimpse into the day I decided to take my diagnosis into my own hands and what I found when I did a little research.

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