Gluten, Gluten Effing Everywhere

Gluten, Gluten Effing Everywhere

fooducateThis Vlog talks about the frustration I had this morning when I came across the knowledge that the cottage cheese I eat every day actually had gluten in it, too.

https://www.facebook.com/A-Token-Life-303943289954801/

In this Vlog I once again mention Fooducate.

 

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Devastating News & Lessons Learned

The past few weeks have been difficult for my family. My boy, who has been known in all my writings as Tree Bear, got some disturbing test results back from a routine doctor’s visit.

With my history in Dysautonomia, I was concerned given some of the results. He has been battling a Vitamin D deficiency and clinical fatigue which we have been treating as a case of depression.  As he looks to transition into a new college program later this month, I decided to request a test on other vitamin levels (B12/Iron) and have his primary care physician test his inflammation levels.

Several weeks ago those levels came back abnormally high without any known reason.

Additionally, I noticed Tree Bear’s acne was becoming unusually pusie with discolored pus (browns and greens) on his back. Concerned, I took him to the dermatologist who advised he had a bacterial skin infection and diagnosed a common antibiotic.

The next week, Tree Bear started having heart burn and digestive distress, including throwing up. I took him to his primary care physician. Concern over the physical exam leads them to perform an ultrasound where Tree Bear is diagnosed with splenomegaly.

By this time, between the vitamin deficiencies, the abnormal inflammation levels and the splenomegaly, I am concerned that he is showing all the signs  and symptoms of someone suffering from dysautonomia. The genetic disorder that has devastated my physical health for so many years. I research providers at Dysautonomia International and see that one doctor is located at the Sibley Heart Center part of the Children’s Healthcare of Atlanta network and Emory University.

We get Tree Bear scheduled for evaluation for dysautonomia. At the appointment at Sibley Heart Center, an rhythmic anomaly is noted during the EKG and coupled with the vitamin deficients, splenomegaly, and inflammation levels, Tree Bear is given a “more than likely than not” diagnosis of dysautonomia. A diagnosis that Tree Bear is still fighting accepting. For him, dysautonomia is a medical boogieman who took his mother’s vitality and health from her right before his eyes. Convincing him that a healthy lifestyle and treatment early in his life would help him live a very different life than my own, is an uphill battle.

mom-and-baby-hands-400x400And all of this does nothing to address what dysautonomia experts call “secondary issues” a diagnosis of dysautonomia indicates. If you have diabetes and then develop kidney disease, kidney disease is a secondary health problem caused by the diabetes. In dysautonomia, the secondary issues often are where the primary symptoms spring from. For Tree Bear, the splenomegaly, inflammation levels and vitamin deficiencies all are rooted in the genetic disorder of dysautonomia, and are considered a secondary issue that requires medical attention. Often fatigue in dysautonomia is actually a manifestation of secondary issues like vitamin deficiencies, secondary infections and viral infections someone is more susceptible to because of dysautonomia.

In order to get real serious about Tree Bear’s treatment, I immediately switched him to work with Heather at Gwinnett Center Medical Associates. Heather is a great provider who has, from the get go accepted that I was that “weird” patient who has really educated herself. She acts as my personal Coordinating Care Physician. This means, she automatically gets all test results from all specialists and I have easy and great access with her nurse, Shari, to see that any tests done by Heather get sent to the appropriate specialist.

Heather saw Tree Bear and we immediately tested for mono or Epstein Bar, did an IG panel, and retested his vitamin D levels. I knew from my history, that low IgA levels are often an indicator of dysautonomia.

Today those results came back, Tree Bears’s IG levels are clinically low, his vitamin D levels are barely passible, and the Epstein Bar test clearly showed a previous infection with some viral load.

Tree Bear is schedule with a new immunologist and I spent most of this morning, going over his results, setting up online access to his different doctors, and bringing his biological father up to speed. Then I broke the news to Tree Bear myself and discussed what I know will be done Thursday.

That’s The Situation AND…

When I talk about the clinical stuff, that is all it is, clinical stuff.  It is me sticking to as close to medical, testable theories as possible. And I am a mother. Tree Bear’s mother. For the past two years I have been treating Tree Bear like he was a teenager who was depressed, angry and lazy, like many teenage boys can be.

I am a bit upset with myself that I ignored the symptoms for sometime.

On the other side, I am so grateful for the personal attention I have paid to my own condition and test results. I am glad that I had partnered with Heather and knew if I took my most precious boy to her, she would listen and help me figure out what to do and where to go. It feels like dumb luck that I knew to ask for the inflammation panel, the IG panel, and check the vitamin levels. It wasn’t. It is the hard experience of my own battle against dysautonomia. It was the complete understanding that this is a genetic disorder that Tree Bear would be highly susceptible to because of his genetic link to me. Tree Bear will never again be told he is being lazy because he is fatigued. He will never suffer through a diagnosis of hysteria.

Tree Bear is learning directly from me how to interface with doctors and I am giving him lots of room and education to make his own decisions. Tree Bear has asked for the table tilt test to be done to confirm the diagnosis and I will encourage him to go to Vanderbilt University for further diagnosis and workups.

There is much that I can be grateful for in all of this.

Lessons Learned

I have learned a few things about dealing with doctors over the years as I battle dysautonomia. This chapter in my journey has taught me a few things about dealing with a chronic disorder and children.

  1. Doctors don’t always know. When I asked for the inflammation panel, Tree Bear was very resistant and his primary care physician even more so. Even I felt I might have been being a bit over protective. I KNEW that high levels of inflammation could indicate dysautonomia, just as I knew that IG levels are important part of dealing with dysautonomia. Too often, mothers who KNOW things let doctors and children talk them out of that knowledge. If the test you request are negative, great! Doing the tests when there is sufficient reason is never a bad thing. More information in chronic illness is always best.
  2. Tree Bear has to be part of the solution. I have to find ways to get him on board with this diagnosis if he is to stand a chance of a healthy life his entire life. Children of any age deserves to be educated about their condition. I have order the Dysautonomia Project book to give to Tree Bear to educate himself. He has to buy into this diagnosis and this means talking to Dr. Hebson into allowing  Tree Bear to have the table tilt test.
  3. Chronic Illness needs all parenting partners on the same page. I spent time this morning talking to Tree Bear’s biological father. To say that we don’t get along is a bit of an understatement. However, Tree Bear needs his father’s support and encouragement to eat healthy, drink water, exercise. Further as Tree Bear’s father, he has the right to know and have access to all the information. After explaining everything to Tree Bear’s father, I sent him all the access information for the various portals so he could look for himself. How I get along with Tree Bear’s dad has no place in a discussion about Tree Bear’s condition. Keep it clinical and on point – just discuss the illness and treatment options. I also sent links to Tree Bear’s dad to get educated about dysautonomia. My hope in all this? Maybe he will see something that I miss or will find some suggested test or treatment that I haven’t run across yet. Fresh eyes and perspective can be very valuable when dealing with chronic illness.
  4. Working against chronic illness, requires a chronic commitment to persistence and perseverance. At least once a week, I spend an entire day thinking about my condition and current treatment plan and now Tree Bear’s condition and current treatment plan. I think about what I can do to improve my health and what other tests or options for treatment I might have not taken advantage of yet that I could. The reason disability exists is to give those who are disabled the time they need manage their chronic or permanent illness or injury. Make sure that you take full advantage of that.

Author’s Note: Tree Bear is 18 now and as a mom I still see him as that 10.5 lb, 27 inch baby I gave birth to 18 years ago.

Tired, Treatment & Genetics

Tired, Treatment & Genetics

Last week I came across my Facebook fed to find the story of Katie Davis. Reading how Katie was treated reminded me of the beginnings of my own disease when I was 18. I contracted Cat Scratch Fever (CDS). I spent nearly two  months being told I was hysterical and/or crazy. It was only diagnosed when my lymph node caused a lower right abdominal hernia. During that surgery, my lymph node, according to the surgeon, literally fell out onto the table because it was so infected. They estimated that I had been ill for nearly six months. Six months of flu-like symptoms that went untreated.

It would be nearly another ten years before I began to understand what was wrong and it would be another thirteen years before I began to understand how very serious the diagnosis I received when my son was born actually was.

I have watched as my own son grows up and experienced dizziness and light headedness, depression and other hauntingly familiar symptoms. Then last week after reviewing his annual blood work, I noted something of concern and took him back to his regular doctor and asked for a work up that would cover mineral uptake into his system and check inflammation markers, all things I have personally learned to look for when dysautonomia is on the table.

The doctor performed the test, convinced, as my son was, that I am a paranoid over protective mother. Then the doctor’s office called to tell my that my sons’ inflammation levels were high and that there was some mineral deficiencies. I already felt like this would be the outcome and had taken some preventive intervention by adding Iron, Magnesium, Fish Oils and Vitamin E, much to his consternation.   Now I am left trying to figure out what to do with him.

DI_Spec Group 1r4

The nearest Dysautonomic clinic is in Vanderbilt and I know from personal experience how difficult it is to get into see them. A quick Google Search reveals that there are few and far between doctors who are dealing with the over all issues caused by a diagnosis of dysautonomia. One national advocacy group has one doctor listed that I have already reach out to in an attempt to get my boy into see them. I am fortunate to see a cardiologist who deals with neurocardiogenic syncope (NCS) which is my specefic form of dysautonomia. However, it is now known that having NCS means that your entire system is not working properly and little seems to be known about this entire system failure.

Then this morning, my son woke up throwing up and complaining about feeling like his throat was closing up. His throat lymph nodes are swollen and coming on the heels of him complaining for a week about “gas re-flux” and “heartburn,” I can already see the signs and symptoms of a person battling dysautonomia. He is tired and sleeps endlessly. A little bit of activity and he is ready to sleep again. It just feels all too familiar, right down to my own husband telling me that I am worrying over nothing and that my son is just a lazy eighteen year old looking for excuses to not do things.

Just as I knew years and years ago when I was sick with CDS and everyone thought I was crazy, I know that my son has some form of dysautonomia. It is just a knowing that I can’t escape.

Today I have been thinking, as I have in the background of my mind since I noticed those blood test anomalies on my son’s work. What can we do differently with him that may help him avoid a life lived like mine – constantly battling fatigue and trying to figure out how to live with a debilitating disorder.

The problem is at eighteen he thinks he is invincible. Convincing him that my token life could be his is a very hard sell. So I will at least have the heart specialist evaluate him for neurocardiogenic syncope and then take him to my primary care doctor where we can talk about the avenues of treatment available to us.

The thought that I have some how passed this horrible condition on to him is nearly more than I can bare in conjunction with my own fatigue and my own illness management.

I am just tired. Tired of having such a rare and poorly addressed disorder. Tired of knowing that my best well never be a best I had hoped for my life. I am tired of choosing to cook a meal for my family or indulge in my passion of writing. I am tired of cleaning for an hour and then being done for the rest of the day and sometimes the next.

This is a horrible horrible disorder that I really believe we will find is directly linked to carcinogens, GMOs, and pollution activating in DNA the triggers that activate this disorder. Even knowing this makes me tired, as if the very obstacles to keeping this disorder from affecting more and more people are almost surmountable.

 

 

Keep On – Surviving a Down Turn

Keep On – Surviving a Down Turn

Last week, I crashed very hard. I spent three days straight doing little to nothing while I waited on some test results and a doctors appointment to address what was found. This has lead me to think about how this down turn is different from past down turns.

  1. You Know When It Is Coming: People with chronic fatigue or illness know when bad times are coming. They monitor their body in a more intimate way than others. I knew this was coming about six weeks ago. I could tell that everyday I had fewer and fewer tokens to use and I found myself crashing hard at night, going to bed earlier and earlier. What I have learned is to take action when I see a downward trend in my fatigue levels and not wait.
  2. Take Action: This goes to a core issue that I think all Token Lifers must deal with: having a medical TEAM on YOUR side. For me, I have a solid relationship with my primary care physician. (There is another whole blog around selecting your physicians and having a primary care physician.). Most Token Lifers will have different doctors of different specialties. What Token Lifers need is a doctor who coordinates their care. Someone who gets ALL test results from all physicians and then cross references those when you visit. Someone who can in turns stream line your care and send you to specialists with very specefic instructions about why you are seeing them.  Further this primary care physician should know what their role is with you. An internist is an excellent choice for this coordinating care physician (mine is an internist). I went to this doctor and told her that I needed a coordinating care physician. I told her that I knew my body and I needed someone who would listen and respond accordingly. After years of working with my CCP (Coordinating Care Physician), when I show up and say, “I am fatigued, something isn’t right,” she listens to me and we always formulate a plan. This involves doing blood work and checking levels that have caused issues in the past. That is what I did several weeks ago.
  3. Scale Back: While I waited on these results, I scaled back my activities. On another blog, I was posting a daily blog and I stopped. I was pressuring myself to do other daily activities that are important but not necessary. I let go of lots of things and only allowed myself an hour at most a day to work. In my Token Life I know what is my base activity for a week is. These are things I have to do no matter what in a week. I let go of everything else. For me this is my water aerobics twice a week, my little part time job that takes eight hours a week, and any doctor appointments. I continued to go to water aerobics but scaled back how hard I worked out. I will get out of the water if I think I am using too many tokens on the activity. Last week I was able to do my little part time job and then hit rock bottom.
  4. Stop. When you hit rock bottom the sooner you accept your place and spend time resting and recovering the sooner you will be back on your feet. I have daily accountability partners (John and Disa) that I answer to. I posted in my family’s private Facebook group giving everyone a heads up. I try to set very, very small goals for myself and if I don’t complete them that is okay. Nothing is as important as recovering from hitting rock bottom.
  5. Ask for Help. This time, I had my son drive me some places so I wasn’t using tokens in that way. I told my son and husband that they would be cooking and doing the normal chores because I would not be. I basically let everyone I know, I was in a temporary, semi permanent timeout.
  6. Try Different Things. When my test results came back, I DECIDED – not the doctor – I DECIDED – what needed to change in my care that would help get me back in the game. After I read the results and consulted past results, I decided what I needed to do that would be different. I went to my CCP and told her what changes I wanted to make and together we settled on a new plan of action.
  7. Give It Time. Since the changes started to be made about four days ago, I am seeing a daily incremental increase in energy levels and tokens. I am seeing a change in my attitude and how I feel. I have a new plan of treatment I will be working for the next few weeks. And I would be foolish to start right back at the same level of activity. I will do a little more very day and I will continue to focus on healing and resting. I will give these changes time to take affect and I will see what happens in time.

What this episode has exposed for me is how many different types of support I have put in place in my life to better utilize the tokens I have and gain back tokens I have lost to my disorder. I hope to explore these slowly over time with you and help you better create a life that is more than the sum total of tokens your illness has given you.

Bad Days

Bad Days

I think it is important for someone following my blog to read when I have a bad day and how A Token Lifer finds themselves having a bad day.

Saturday I spent from 2 PM to 7 PM making a personal appearance and doing some peer counseling. I knew before I undertook this commitment that I would be using more tokens on Saturday that I have for one day. My personal appearance, however, was part of a fundraising effort for my local church and other worthy causes, so I felt it was very important that I do the appearance.

The night before, I was laying in bed worrying about this blog and end up getting up to write several blog posts that are still posting. I went to bed at 2 am and woke around 11 am stilling having A Token Life, the blog, running around in my head. Thinking about what had been written, I found myself at my desk writing again and talking to John Umbras about mathematical equations and how to figure tokens based upon medical conditions and actual medical information (something we are still working on).

Before I knew it I was late to my appearance and had spent a ton of tokens before I left. Then after my appearance I went to dinner with John and his wife to talk more about my mathematical problems (John has a PhD in mathematics) and to talk about the appearance and event and the fundraising. Before I knew it, it was 9:30 PM, I was exhausted and excited and turned on because Josh and Anu are HOT HOT HOT!

Then I get home and can’t help but take my energetic frustration out on my husband. We had a short but vigorous session which was much needed and happens not enough.

I then slept until late Sunday. I woke to a husband who needed help balancing the checking account which took what little was left of the morning. Before I knew it I found myself at my brother’s birthday bash with nearly all the rest of my family. Then it was off to drinks with a smaller bunch of my family before we took in DeadPool for the 2nd time. None of which I would want to miss out on.

By the time I got home, I had nothing left for my still amorous husband who got turned down just before I passed out asleep.

Now it is Monday morning and I was off to the chiropractor, and then to my office (which is actually a Starbuck’s near my home) to work on posts for this blog and many others I either administrate or write for. By lunch I went to the bathroom and took one look at myself and realized I was done and had to go home.

My face was pale despite having some make up on. My heart rate was way elevated. Despite this, I forced myself to meal plan for the week and create a shopping list. I made my teenager drive me to the store, help me shop and then unload all the groceries.

Even after I get home, I am still answering emails and doing work and then there was a friendly visit during dinner which I helped prepare with my husband.

I detail all of this because of YOU. I know YOU do this too. You get to feeling better and then you schedule more and more. Without even realizing it you have over booked and over planned, stretched yourself too thin. So what is a Token Lifer to do?

LOOK AHEAD

Given how I feel right now, I have looked at my calendar for the week. I have to work tomorrow my part time job and then Wednesday I have two doctor appointments and a ministerial meeting in the afternoon. This means that I will have to work at least nine hours tomorrow to be free to do the things required on Wednesday. Also my boy wants to have friends over for dinner Wednesday evening. Further I have water aerobics tomorrow morning and Thursday. Thursday looks relatively free except for a ministerial appointment Thursday evening and another ministerial appointment on Friday. Saturday may need me to be at another personal appearance, and Sunday my church has meetings and events scheduled.

I also took out my to do list and went through it. I take my list and I consider what HAS TO BE DONE. If it doesn’t make HAS TO status, then it gets bumped to next week.

PLAN NOW

Once I have thought out my to do list in relationship to my week’s appointments, I start to think about dinner. Tomorrow, if I get both my boys in the kitchen, I could set up a crock pot meal for Wednesday and have the chicken meal tomorrow night. Then Thursday and Friday, I can let the boys cook the stir fry and another easier beef meal. I can send the boys a text Thursday and Friday with a link to how to make the meal and let them know NOW what my plan is so they can schedule work and other issues around that.

My other concern for the week is laundry. It didn’t get done over my busy weekend, so I need to figure out when to do this. I also have to figure out when I can schedule time for me to REST and DO NOTHING. There is no way I am going to make this week if I don’t find extra time to do nothing.

EXECUTE

I am going to go to water aerobics tomorrow morning and then come home. I am going to let everyone know that I will not be available tomorrow or Wednesday. I am then going to start my laundry and try to run it throughout the day on Tuesday. In the morning on Tuesday, all I am going to do is REST.  I plan to work from home tomorrow afternoon. I will work until my husband comes home and then work with the boys to prep dinner and the meal for the next day. I will leave the boys to continue running laundry and spend the evening finishing my work before I go to bed.

Wednesday I can rest between my first two appointments and will have to catch lunch out to catch my third. I can put my dinner on before I leave for my second appointment for the day while I am resting. After my last appointment I can rest Wednesday evening and night and leave clean up to the boys.

Thursday I can water aerobics and work the morning. If I knock of around 2 pm, I can rest for three hours before my evening appointment. Friday I can sleep in late in the morning and not start work until after lunch and then knock off after a four hour stretch. Saturday I will need to spend most of the day recovering my week and will need to recruit the boys to do most of the chores. Sunday mornings I typically reserve to do very little or nothing so that means I should have pretty good luck dealing with Sunday’s events.

PLAN NOW TO CUT OUT

Looking ahead I can already start cutting out things if I need to. I can drop water aerobics if I need more rest and to conserve tokens. I can refuse to cook all week if I have to and get the boys to step in instead. Saturday’s event could be handed off to another minister if I need to and I can already set up to do that if I plan now. This would free my Saturday for more resting and less activity. I can also drop doing the laundry and make my son cycle it instead or just not do laundry this week. I can also give all my weekend chores off to the boys as well.

SET THE MINDSET & RECRUIT HELP NOW

I know this week is going to be tough. So I need to hold myself to resting when I get the chance, drinking lots of water, taking my medicine on time, go to bed on time. I need to let my church leadership team know so they are on board with any extra help I might need. I need my family to know so they can plan. I need to set my own expectations of myself a lot lower than I normally would or I am going to crash and burn.

I could spend my time wallowing about how I have over done it or I can plan and take action to adapt and over come.

How are you going to adapt and over come?