Oct. 23, 2015, I was at my desk on my computer late at night and my leg felt as if it was going to sleep on my right side. Then arm started to hurt, so I went to bed. I got up at 7:30 am on the 24th and went about some Saturday errands.
At 1ish, I went to help at my son’s school for the Fall Festival. At 3ish, my head was pounding so I went home to lie down. I got anxious and could not lie down. My Mom was in town, so I said, “come on… we are going to the hospital”. I drove to an emergency room/surgery center because I knew there would be no wait even though I am closet to 3 other hospitals that are always busy.
I drove over the speed limit, but by time I got there, I knew what was happening. I am a Health Coach with Celiac Disease and I am very in tune with what goes on with my body. So, I walked in saying, “I AM HAVING A STROKE!” They tried talking me out of that with the standard standing tests. As I started cursing telling them my father passed from a Cerebral Hemorrhage at 36 years old, I had just turn 49 and I began cursing as my face dropped on the right, and them my PB was sky high. OH… OKAY, YES, SHE IS HAVING A STROKE.
In the exam room, I was given some medication and the stroke seemed to pass faster than it came but the damage was done. I had numbness and weakness on my right side. My head hurt like the time I was given Armor Thyroid for my Hypothyroid and it caused migraines that made me vomit.
I had a CT scan but they did not have anyone for the MRI on the weekend. So, I was taken by ambulance to the hospital about 5 miles away. I was a Direct Admit into a room. The staff came running to hook me up to everything. I was babbling, but thank GOD, I would think enough to kick a nurse out of my room that wanted to do a swallow eval with a turkey sandwich. I was last in that hospital May, June and July, so my records are clear that, “I have CELIAC and DON’T EAT SANDWICHES!” I asked her was she trying to kill me. She went off looking for pudding which she never found.
I finally got the MRI that showed an Ischemic Stroke; a blockage on the left side of my brain that affected my right side. I was monitored all night. They told me I stopped breathing and should probably be on a C pap for Sleep Apnea. It was a long night with all the coming and going, being hooked up and off of equipment.
The next morning, I was evaluated by Speech, PT, Neurologist and the floor attending physician. I was discharged that evening. The worst part is that I was released to go home and figure my life out on my own. I was not given a list of phone numbers to services or support groups. My head still hurt like I had been hit in the head with a hammer and all I could do is sleep. So I did. My son was at his dad’s during this time and when he returned, I explained the whole thing to him.
So for the most 2016, I was in Speech and Cognitive therapy. I was in Occupational Therapy twice in 2016. I have been in Physical Therapy 3 times and continue now. Insurance only allows a limited number of visits, and then requires a wait and a reevaluation before returning.
I still have some weakness and balance issues. I continue to have a headache (mostly on the right side) everyday and fatigue. My right leg feels like it has a steel plate for a shin. It hurts all the time, at various degrees. My right arm feels like it has a brick attached, but I use it through the pain. I had half my hair cut off to shorten the amount of time I have to use it every day. I have to check my patience and anxiety. There are days where I am short with people and know when to take a few minutes alone. If, I had to pick the worst issue after head pain, my second biggest issue is cognition. The expressive aphasia still exists. I think in my brain what I want to say, but at times, I can’t get the words out. I usually pause, briefly explain to the person what s happening and by then, the words connect. Oh, and my memory SUCKS! Sometimes, I cannot spell the simplest of words. If I did not know a person or thing before the stroke, it takes a repeated interaction to remember it/them. Everything I do, takes longer to do it. My life requires a lot more planning. I take 3 Rx, but the doctors want me on more. I avoid RX because with Celiac, gut health and balance is a slippery slope. I also have to call each manufacture (usually in India) to make sure they don’t have gluten in the pills. The US pharmacies don’t want the liability, so they won’t make the calls.
Al though I try to not let it consume me, I live in fear of Dementia or Alzheimer’s due to the traumatic brain injury. I have not returned to full-time employment, as I have no idea how that would work out. Clocking it on a set schedule would not work most days. I continue to work towards expanding my private business endeavors.
The proudest thing is that my son knows he has my support and he has not skipped a beat. He excels in his education and sports. I do what I can at school and with homework and I’m always going to be Team Mom. His health is very important to be too. I cook just about every day. I try to have leftover at times for the next day, but he is a teen whom eats like a grown man.
So that is my story. Regardless to how “minor” a person’s stroke was, NO ONE IS EVER UNAFFECTED AFTER A STROKE. If you can relate, please share your story with me.
How do you know if you have an issue with gluten if you have any of the other diseases or complications?
One thing people do is a 21 day elimination diet. To do this, you need to eliminate wheat, rye, barley and I also suggest malt and oats from your diet for 14 days. At about 1 week, you are liable to feel like crap as the body detoxes. Then between, day 7 and 14, you are on the upswing. Then you begin to eat gluten items again. For a week moving toward 21 days, you will know how you are affected by gluten. Now oats may not be an gluten item but they are usually contaminated by wheat production so I throw them in. I eat some “certified gluten free oats” from Trader Joe's after being diagnosed and I was in bed for 3 days.
Let’s talk tests:
People with Celiac Disease who eat gluten have higher than normal levels of certain antibodies in their blood. These antibodies are produced by the immune system because it views gluten as a threat. You must be on a gluten-containing diet for antibody (blood) testing to be accurate. So if you go gluten free, feel better off gluten and then want to get blood tested, they are going to tell you to eat gluten for several week to raise the antibodies to get a more accurate result. Sounds daunting right? Keep eating something that you realized is making you not feel so go.
If you still believe you have issues after testing negative or with a positive test, the gold standard is a biopsy of the small intestine which is the only way to absolutely diagnose Celiac Disease.
There are other antibody tests available to double-check for potential false positives or false negatives.
Another such tests are:
2. Total serum IgA: This test is used to check for IgA deficiency, a condition associated with Celiac Disease that can cause a false negative tTG-IgA. If you are IgA deficient, your doctor can order a DGP or tTG-IgG test.
3. Deaminated gliadin peptide (DGP IgA and IgG): This test can be used to further screen for Celiac Disease in individuals with IgA deficiency or people who test negative for tTg antibodies.
In light of Dr. Angelou’s home going and now the post of a stoning video of the young woman, I have been deep in thought and reflection. Mother Maya said, "You are the sum total of everything you've ever seen, heard, eaten, smelled, been told, forgot - it's all there. Everything influences each of us, and because of that I try to make sure that my experiences are positive." This is so true! The sum total of everything. Each of us.
With my recent chronic health issues being labeled, this quote hits me especially hard. When I think of where my life is and where it has been over the years, I have had a good ride. Of course everything has not been roses and ice cream, but in my time on this planet, being a spiritual being having a physical experience, I have done many things to be proud of. But as God has not taken my last breath away yet, I know my work is not done. "The need for change bulldozed a road down the center of my mind." As a Zen practitioner, I consistently strive to live present in the moment. Yet, I must plan, to the best of my ability for the future. I can’t go blindly into the day and hope the lights stay on and that whole, clean food appears. Yet the big question for me right here and now, is how will I live my last days? What impact will I make on/for my son and the world? Dr. Angelou also said, “I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel." So, what is my legacy? What will I leave for others to be proud of, to remember about how I made them feel and to know the presence of God in my life?” I promise to spend my last days making you feel something and I hope by feeling something, it moves you to act in the lives of others. "Try to be a rainbow in someone's cloud."