Illness Awareness Month

Illness awareness months are a big deal providing an avenue for education. Furthermore, it gives those enduring the illness a set apart time to celebrate all the victories they have had over their illness. It seems more socially acceptable to take off the healthy person mask revealing how life is with a monster on the loss inside. Our awareness month also gives us the much-needed reminder that indeed we are not alone despite the feeling of isolation. It is a cracked door allowing outsiders to get a tiny glimpse into living with a chronic illness.

May is one of those months that someone was like let’s see how many illnesses we can raise awareness for in this month and they might have been a bit overzealous. On one hand, it’s great, especially if the majority of your illnesses have the same awareness month. On the other hand, it is a bit much in a short month.

With a complex illness, you could easily take a year or more talking about the illness, testing, medications, and daily living. Times that by over 12 is hectic. To complicate things a bit more the majority of us have more than one chronic illness!

  • American Stroke Awareness Month (promoted by the National Stroke Association)
  • Arthritis Awareness Month
  • National Asthma and Allergy Awareness Month
  • National Celiac Disease Awareness Month
  • Hepatitis Awareness Month
  • Lupus Awareness Month (promoted by the Lupus Foundation of America)
  • Melanoma/Skin Cancer Detection and Prevention Month
  • Mental Health Month
  • National High Blood Pressure Education Month
  • National Osteoporosis Awareness and Prevention Month
  • Preeclampsia Awareness Month
  • Inflammatory Bowel Disease: Chrons & Ulcerative Colitis.
  • Fibromyalgia
  • Ehlers-Danlos syndrome

I currently have a diagnosis of the following just from this list: Lupus, Ulcerative Colitis, Osteoporosis, Arthritis, and Asthma. In addition, I might have Autoimmune Hepatitis and Ehlers-Danlos Syndrome.

I always like to challenge everyone to learn one new thing in May about one illness. I am a strong believer in education others about chronic illness. I have encountered medical professionals who have been in need of education (I am not trying to be rude in any way). I have had people in the medical field ask me what’s Lupus? A basic understanding is helpful. Knowing just a little bit helps, even if you are not sick, for the day you encounter someone with an invisible illness.

I could go on all day on this topic, but I won’t as I am sure you have plenty on your to-do list today. Have an amazing day! Be sure to Like Chronically Hopeful on Facebook and subscribe to this blog! There will be a handful of guest bloggers which I am SO excited for!

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The Problem of the Semester

Introducing the problem of the semester. Each semester I seem to run into at least one big obstacle with my health. Lupus doesn’t think college is eventful enough.

After coming home from the hospital, I collapsed, at least, four times from POTS landing on my right hip. Needless to say, I was experiencing hip pain. It was determined that I didn’t break anything. Even so, the pain was getting worse. I knew there was something wrong.The concern became that it was possible my body wasn’t providing enough blood to the bones in my hip. That could cause a bone or tissue to die. My doctor sent me for an MRI which revealed a growth along with some torn cartilage. Now I am waiting to see a specialist to see what the next step will be. Waiting is one of the most challenging things. Not being able to do much for the pain and not knowing what they will suggest to do for the issue at hand.

With Lupus, there is hardly ever a dull moment. I think about my friends with Lupus and everything they go through because of this illness. It can feel like you are just overcoming one obstacle and boom there is another. At times, it is difficult to process everything that is happening. We get use to dealing with certain things like blood work, but additional obstacles don’t become easy to deal with.It threatens our Lupus normal and can cause stress. This is one reason it is vital to have a support system not just of encouraging people but also of others who are dealing with chronic illness. Those  of us with chronic illness have a different perspective and provide a different element of support to one another.

At times, people tell us how we should react to an obstacle or tell us the ‘magic’ cure. If you are also facing a health obstacle it’s okay to feel emotional or to feel fine. Your emotions are not wrong. You have enough strength for whatever you are going through. Wishing you all a wonderful afternoon. 🙂

 

Hospital Part 2

Part two more or less of my hospital stay. I apologize it is all over the place.

I had two strange nose bleeds. I have had more nose bleeds in my life than I can count but these were different. My second one happen 4 am. I got blood everywhere in my bathroom, it poured out uncontrollably. I am anemic currently so I feel that it is related.

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I had a repeat colonoscopy last Tuesday.  The picture above is my special drink. I usually do Miralax for colonoscopies. I found this solution to work quicker, be less painful, and taste somewhat better. I did get dizzy.  This one is called go lightly. I got the solution late in the day and was still nauseated so my nurse told me to drink as much as I could without making myself sick. I got more than half down.

I had been given my insomnia medication the night before the scope. I usually don’t take it at home and I had forgotten why until I had an emotional meltdown directly after the scope. I didn’t get much sleep the night before and woke up too soon after the scope. I wasn’t crying because my colon has healed somewhat. I was crying because I was scared of not being taken seriously and being taped in this abdominal flare up. I know the pain levels need to come down in order for me to function better. Apparently not everyone understands that humans have emotions. Someone had told my mom that I need a psychiatrist. I get extremely irritated when people dismiss me or downplay my pain and symptoms.

I believe that crying can be helpful in coping with an illness and life in general. Medication can also play into emotions. I have had people tell me I need a better attitude when I am doubling over in pain at the doctors office. No one smiles 24/7.

The IV fluids were my best friend. It makes a huge difference. I ran low-grade fevers off and on as well.

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I was discharged late on the 6th. I have only been home a few days, my body is still trying to adjust. Last night I wasn’t able to sleep. I started having IBS/IBD symptoms 4 am. Therefore, Saturday was  difficult. I had a lot of nausea. I couldn’t take any of my meds until 1 pm. The doctor had been talking about readmitting me, but I don’t feel that is necessary at this point.

I see a newish Gastro Friday. We are hopeful that she will be able to help. I am still randomly bruising and bleeding. I am able to eat some. Grateful for the small improvements. Thank you to everyone who prayed for me when I was in the hospital.

 

Chronic Illness & Summer

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Summer became my favorite season as a teenager. The break from school was nice, but the adventure of summer was the most appealing aspect. Having the time to be outside more to hiking, swing, and go swimming. Just about every summer as a teen I went away with my church. From mission trips to camp to a pilgrimage in Taize.

Having Lupus has changed my relationship and view of summer. It is nice, but it is something that I would rather not deal with. I have severe sun sensitivity. Worst then the average Lupie. With in minutes of being in the sun, I begin to feel ill.  Sometimes even being in the car when the sun is out makes my symptoms worse. Currently I avoid the sun as much as possible, it is the only thing that works. Sun screen does not help me, though it makes a huge difference for many people with Lupus.

If you are sun sensitive be sure to take Vitamin D. Know your limits with Lupus. If you can be in the sun for an hour, just do an hour. Don’t push yourself more then your body can handle because that can and most likely will push you into a flare up.

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This will be my first summer with POTS. Dehydration is a concern for anyone in the summer, but even more so if you have POTS. People with POTS become dehydrated easily. The past few weeks I have been battling dehydration. My best advice for other POTies is to drink lots of water and Gatorade. The electrolytes are needed. Though I am new to the POTS world, I would advise people with POTS to be careful in the heat. Too much heat can cause someone to become dizzy and pass out. Again it is essential to find balance with any illness and summer.

What challenges do you face in the summer with your chronic illness? How do you cope with the challenges?

Prednisone Part One

I have shared on here off and on about my treatment plan. My treatment plan has drastically changed after leaving the hospital. This is partly due to my liver and partly my doctors just being a bit annoying. I have been pulled off of Methotrexate and Benlysta.  Right now my main medication is Prednisone. I have decided to do a small series of Prednisone blog posts, hopefully someone will find it helpful. Prednisone, it is almost always a love- hate relationship. It is unclear which is better being on it or not. There are an abundance of harsh side effects, yet it is a life savior. 46bde1cc6919eb9cff7a962b8c6f5026

Most Spoonies know of  Prednisone, for those who don’t, I will give you a brief overview. By definition Prednisone is, “an analogue of cortisone,used as an anti-inflammatory,immunosuppressive, and antineoplastic in the treatment of various diseases.” Put simply, Prednisone is a steroid. The body naturally makes low amounts of steroids it is also classified as hormones. This steroid is not the same type that well known people such as sports players or movie stars take. Prednisone should be a fast acting medication. It is used for countless illnesses arthritis, blood disorders, breathing problems, severe allergies, skin diseases, cancer, eye problems, immune system disorders and additional illnesses.   download

There is a side effect overload when looking at Prednisone. The side effects range from irritating to utterly devastating. Some ‘mild’ side effects include: Abnormal Fat Distribution, Absence of Menstrual Periods, Acne, Disorder involving Personality Changes, Excessive Hairiness, Excessive Sweating, Feel Like Throwing Up, Moon Face, Visible Water Retention, and Weight Gain. More serious side effects include: Seizures, Infection, Low Amount of Calcium in the Blood, Thin Fragile Skin, and Anemia. Most people experience at least one side effect while on Prednisone. Every encounter with Prednisone is different. It is a difficult medication to be on. Many times it alters someone’s personality and how they look. Coping with side effects is a challenge. It is meant to be used short term, but that is not always the case. prednisone2

Check back this month for more Prednisone posts. I will be sharing my personal experience and talking about how to cope with Prednisone.

Dear Lupus

Dear Lupus,

You came into my life abruptly and completely took over. You have stolen a lot from me. You have put me through countless hours of doctor visits, medical testing, and unbearable pain. You dictate my life.

Because of you…

I cannot trust my body

I lose hair

I wake up in the morning with rashes and fresh bruises

I need to rest too much

I had to give up dance

I can no longer enjoy time outdoors

I need to take pills everyday

I cannot hang out with friends

Because of you…

I struggle to write

I have trouble walking on my own too often

I have lost friends

I missed my prom

And other ‘important’ high school events

There are days…

I cannot eat

I drag myself through the day

lifting my tooth-brush is tiring

I cannot stop crying because of you

Though you have caused set backs and heart breaks, I cannot neglect to recognize the positives. You have taught me a number of things. You have helped shape me into the person I am today. I can fake a smile and tell jokes despite my pain. I am more grateful and find tremendous joy in the simple things. I cherish every moment with those I love. I have met inspiriting people.

You will win many battles BUT I am not going down without a fight and ultimately I will win. We will defeat you Lupus.

Sincerely Your Grateful Victim,

Victoria

A New World

I have just stepped into the world of Methotrexate. Though I am a foreigner, I must admit I am excited to be on this journey. Let me back up. I am sure someone is thinking, “What is Methotrexate?” Methotrexate is a medication which falls into the following classifications: Disease Modifying Anti Rheumatic Drug, Immunosuppressants; Antineoplastics, Antimetabolite, Immunomodulators, and Chemotherapy. I’m sure the majority of this list looks Greek to you, just a bunch of medical mumble jumbo.

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Methotrexate slows down the reproduction of various cells. It also decreases inflammation. It is used to treat diverse illnesses, however it is not completely understood why it improves some illnesses. It is also said to decrease pain and stiffness due to athirst. Methotrexate is used to treat Cancer, RA, Lupus, Psoriasis, IBD, and a handful of additional chronic illnesses. Though many people go on this medication only half of patients improve.

As with any medication, Methotrexate can come with a variety of side effects. Some include: dizziness, drowsiness, headache, nausea, swollen, tender gums, decreased appetite, and hair loss. It is essential to weigh the pros and the cons before beginning any medication. It is also vital to be extremely education this way you know what to expect.

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When my doctor mentioned Methotrexate, my anxieties about seeing a new doctor melted away. Excitement ran through my veins. I had researched and discussed the possibly of going on this medication a while ago though it seemed unlikely anyone would put me on it. The doctor offered give me information on it and allow me to think about beginning the medication. Consumed with disappointment I informed her that I was educated about this medication. That’s when she decided to begin me on a low dose of Methotrexate. I do believe this is a positive move for me. I feel like this medication will work well with my body. I am hopeful that I will be able to function more the longer I am on it.

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Currently I take Methotrexate orally, pill form. It also comes in a self-injection, which sounds ideal to me because it gets into your system quicker and there are less side effects. I only take it once a week. I took my first dose Friday night, around 8 pm. I chose to do it on the weekend this way, once school begins again I have time to recover. Most people say it is best to take it at night this way you can ‘sleep off’ the side effects. I agree 110%.

I did have slight anxiety about beginning a new medication, due to the reaction I had to Reclast (https://chronicallyhopeful2014.wordpress.com/2014/10/25/reclast/). I think it is normal to have some anxiety when altering your treatment plan.

I ate dinner around 6 pm then completed my evening routine. I had a few crackers 15 minutes before taking it. I made sure I was comfortable, had anything I could possible need, and relaxed before taking it. . I felt completely fine, until I stood up. Then I began getting dizzy and some nausea began to set in. Fatigue and nausea slowly but steadily increased. An hour and a half after I began getting a head ace, but it was mild. I had peppermint tea to help settle my stomach. Before I went to sleep I was experiencing mild dizziness, headache (6), slight increase in upper abdominal pain, extreme fatigue, nausea (7), and feeling a bit foggy. Two hours after taking Methotrexate I went to bed.

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The ‘side effects’ I experienced were not out of the norm for me. Honestly I had expected it to be a lot worse. I have heard that the first two doses are the worse. I think my first dose went very well.

I did not sleep well that night, which is most likely due to the fact that I had my Benlysta treatment that day as well. The following day I experienced a lot of nausea. I did have fatigue however I cannot blame it on the medication because that has been an ongoing issue.

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I hope if you are considering beginning this medication that you found this blog post helpful. Please feel free to ask questions. I will be doing a Methotrexate survival guide in the future. Sending spoons, prayers, and hugs. ❤