Dysautonomia Awareness

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October is slipping by fairly quickly because of school and pyelonephritis. I truly wish I had more time to devote to  Dysautonomia awareness month. Millions of people are affected by  Dysautonomia worldwide. Sadly, like with many illnesses, there is not enough research or enough treatment plans. “Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about.” In addition, I strongly encourage you to take a look at this video from the Dysautonomia foundation.

POTS Awareness Video

The beginning of my POTS symptoms is unclear. I had adapted to my peculiar symptoms. Then I landed in the cardiac unit from an allergic reaction to Reclast about two years ago. My nurse had woke me up a handful of times because of tachycardia. Then I overheard some medical professionals discussing my case and mentioned that I might have POTS. Of course, I did the tilt table a few weeks later with extremely positive results.

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POTS impacts my life daily. Some daily symptoms include Tachycardia , low blood pressure, dizzy spells, not absorbing things properly, brain fog, fatigue, and dehydration. In addition, I collapse, shake, and pass out. Currently, my treatment plan isn’t excellent. My doctor refuses to order saline. My only POTS specific medication is tachycardia medication. I do not have additional treatment options at this point in time due to my overlapping illnesses and treatment plan overall.

Accommodating myself is a challenge, to say the least. Hydration is a struggle, especially due to the fact that I cannot absorb fluids properly at times with Ulcerative Colitis.  Gatorade, water, tea, and drip drop are some ways I attempt to fight dehydration at home. At times, my cats can sense when I am going to pass out or have a POTS flare. In addition, I do minor diet modifications. Compression stockings are a must, though I wish they helped a bit more. Whenever I go food shopping I use a wheelchair.  If I am on my feet I clench the muscles in my legs and back to assist blood flow. I never lock my legs. I elevate my legs frequently as well.

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Education of POTS is lacking majorly in the medical field. I recently came a crossed a doctor that believed that POTS is purely a psychiatric disorder. Needless to say, I was irritated with the conversation. POTS is a health condition. It is complex. There are no cookie cutter patients. New research suggests that it might be an autoimmune disorder.

The Foundation page has some excellent resources for living with POTS. I hope you learned something from this post! If you live with Dysautonomia share what type and how it impacts your life in the comments. Lastly, if you aren’t in a support group find one. There are a wealth of in-person as well as online support groups.

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General Medication Guide

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I can recall a time when swallowing pills were my worst nightmare. I was never able to remember to take my multi-vitamin. And I would avoid medication like the plague. Those days seem a lifetime away in my past along with carefree sunny afternoons of childhood. If you are newly diagnosed, there is a lot to learn, it can be intimidating.

If you are newly diagnosed, there is a lot to learn and a lot that sounds scary. The majority of people with a chronic illness will encounter a medication at some point in time, for many of us, it becomes a daily part of life. It becomes as natural as brushing your teeth.

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Constructing a treatment plan and sticking with it is essential making a big difference. The positives and side effects need to be considered before agreeing to any medication. Listening to the doctors expert advice is vital. In addition, I recommend doing your own homework and speaking with others who have taken the medication if possible. Keep in mind that everyone’s body reacts differently. Your body will not react the same way someone else’s has. If you have a caretaker or support system it is also wise to get their option. Personally, I always talk to my mom letting her know what I have learned about a medication, side effects, how long it will take to work, and my thoughts. It is okay to say no if you are not comfortable with taking a particular medication.

Vitamins and Supplements

Vitamins and supplements need to be discussed with your doctor and carefully thought out. I have multiple autoimmune disorders, therefore, my immune system is overactive. Vitamins and supplements boost your immune system, so I need to be cautious as I select only what my body truly needs. Which vitamins I take does vary on what my body needs and what other medication I am on. For example, with Prednisone potassium is one thing I know I need to have. With Depo, I need calcium and vitamin D. If I feel like I am not absorbing things properly I increase my vitamin C. Balance is key. The only other supplement I typically take is fish oil which can assist in brain fog and inflammation.

Over the Counter

Interactions need to be checked, whether it is with vitamins, prescription, or over the counter medications. Again over the counter medications must be discussed with your doctor to ensure it is the best thing for you. By simply talking to your doctor you can avoid terrible interactions and side effects.

Organization:

Organization is essential in many aspects with a chronic illness. If I didn’t have a system, I would not take my medication or vitamins ever. Especially considering most of us have brain fog. I keep all my medical supplies in a crate. This not only includes my medication but also tiger balm, braces, and chemo supply. I also have a daily pill organizer.

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Knowing when to take medication is important. Personally, I take the majority of mine after meals. Setting an alarm on your phone can be helpful. There are also free apps to help remind you to take medication on time. Having someone you are frequently with check in with you can also be useful.

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Whenever I go out I use old pill bottles to store the medication I will need or might need. I have a makeup bag that I put everything such as my inhaler, that I might need while I am out.

How do you stay organized with medication?

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1.The illness I live with is: My main illness is Lupus. I have autoimmune and an additional half dozen.
2. I was diagnosed with it in the year: 2013
3. But I had symptoms since: Childhood.

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4. The biggest adjustment I’ve had to make is: Not being able to be in the sun not being able to be on my feet for to long.
5. Most people assume: That I’m healthy, faking, or lazy. That I don’t do anything productive on a regular day.
6. The hardest part about mornings are: Being dehydrated. Dizzy spells.
7. My favorite medical TV show is: Diagnosis Me
8. A gadget I couldn’t live without is: My heating pad.
9. The hardest part about nights are: Getting to sleep & saying asleep.
10. Each day I take __ pills & vitamins. (No rude comments, please) Currently about 15. I also do chemo, self-injections, once a week. Please no rude comments, but feel free to privately ask me about my treatment plan! =]

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11. Regarding alternative treatments I: I have tried a lot of different treatments. Currently in regards to alternative treatments I maintain a healthy diet, aroma therapy, and keep stress levels down. A lot of ‘natural’ treatments can be risky for my combination of illnesses.
12. If I had to choose between an invisible illness or visible I would choose: I don’t prefer one over the other. Most days I my illnesses are 110% invisible. I have worn braces or used walking devices and some people are just as judgmental. You’re too young to use that.
13. Regarding working and career: It is difficult that I cannot work right now. I am a full time college student and patient.

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14. People would be surprised to know: I am busy despite my illness. I try to be transparent about it in hopes that others can open up about their illness. In no way am I looking for sympathy I want to encourage, support, and educate others.
15. The hardest thing to accept about my new reality has been: I need to rest and slow down.
16. Something I never thought I could do with my illness that I did was: Achieve a 4.0 GPA.

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17. The commercials about my illness: Ha. They are great… now only if the TV would play them…
18. Something I really miss doing since I was diagnosed is: I miss being normal. Doing normal activities like going out with friends, mission work, and being outside especially in the sun.
19. It was really hard to have to give up: Doing mission work and being outdoors for extended periods of time (AKA on a sunny day more than 5-10 minutes)
20. A new hobby I have taken up since my diagnosis is: Running a Facebook page, a blog, coloring, and crocheting.
21. If I could have one day of feeling normal again I would: Something outdoors, maybe visit the ocean…One day mission trip? So many possibilities!
22. My illness has taught me: To cherish every moment.

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23. Want to know a secret? One thing people say that gets under my skin is: You don’t look sick.
24. But I love it when people: Listen. And are supportive.
25. My favorite motto, scripture, quote that gets me through tough times is: So many to choose from! I love, “The Lord will Fight for you, you need only to be still” Exodus 14:14

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26. When someone is diagnosed I’d like to tell them: To educate themselves. Allow yourself to grieve and to adjust to Lupus. Learning to pace yourself is key. You will inspire so many people!
27. Something that has surprised me about living with an illness is: How rude some people are, especially those in the medical field.
28. The nicest thing someone did for me when I wasn’t feeling well was: Spend time with me and being supportive. Don’t under estimate the power of a simple short conversation or a gentle hug.
29. I’m involved with Invisible Illness Weekbecause: I feel obligated to share my story and assist others with chronic illness in any way possible. My hope is that others will be encouraged, learn, and find support through my openness. I am bursting with excitement for invisible illness awareness week. I hope you will join me in learning about invisible illnesses, celebrating those who have overcome obstacles their illness has presented, and sharing inspiring stories. Together we can put a stop to the assumptions of invisible illness. We can make invisible illness visible. https://chronicallyhopeful2014.wordpress.com/2015/09/08/invisible-illness-awareness-week/

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 30. The fact that you read this list makes me feel: Excited.

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Methotrexate Update

Beginning classes has been more demanding on my body than I had anticipated. College has sucked the spoons right out of my grip. New classes, new symptoms, and new challenges. The delicate balancing act is always being reshaped. Determining where the line is between pushing a little further and pushing to hard is complex, because the silly line keeps moving.

I am fairly certain this is the most stable my health has been sense I began college. By no means does that mean I am able to run a marathon or doing anything crazy. Realistically, daily activities are still a struggle. I saw my doctor the week I began school. The goal is to come down to 25 mg of Prednisone. Additionally, she increased the Methotrexate by 4 or 5 mg. For this particular medication that is a jump. This jump has it’s perks. I was moved to the self injection. Yes. You read correctly, I did say that the self injection medication is a positive thing. No I haven’t lost my mind and I do not like needles. My body goes through periods of times when it doesn’t absorb most of what is put into it. It has been questioned several times how much of my medication I am actually absorbing. Overall absorption is not a key issue currently.

The last time I had seen my doctor she wanted me to take some of the Methotrexate in the morning. It was to rough on my body to break in up over twelve or more hours. I could tell she was hesitant switching me to the injection. With my medical history I don’t blame her. At the same time, I know my body and the majority of the time what is best. I have complete confidence that the switch to the injection is what is right for me currently.

I did not receive a decent lesson on how to do the injection. I am not positive the person who showed me knew how to do it. She showed me how to fill the syringe. When we picked up my meds and supplies from the Pharmacy the well meaning pharmacist increased my anxiety. He told me the needle should go in at a specific angle. My first though was oh no, I am gonna mess this up, I am terrible at math! Needles? No big deal. Math? I’d like to run away.

I was nervous like any other person doing my first injection. I finally got up the nerve to get it over with and did the injection. I knew something was wrong. At first I thought it was an allergy to the needle. I got a bit puffy and yellow at the injection sight. Once the needle was out I got extremely dizzy. I laid down for five minutes and the dizzy spell passed. After worrying my head off I realized that I didn’t put the needle in deep enough which is why the sight was puffy and yellow (The medication is yellow. Someone said it looks like pee… which isn’t a lie lol). The following day I felt sick and extremely tired.

I did my second injection last Friday. It went much better. The meds sting towards the end of the injection. I do premedicate my self. The side effects were very minimal.

I have had a lot of medication changes with steroids and chemo. It is demanding on my body and emotions. Being ill is equivalent most times to having a full time job.