Effects of Chronic Pain

I have struggled greatly with pain for many years. It began as a child but was not as intense. I remember hearing people complain that they were in pain and it was just part of ageing so I figured it was a part of growing up. Little did I know it was abnormal. Searching for answers was no easy task. I am diagnosed with Systemic Lupus Erythematosus, Ulcerative Colitis, Hyperadrenergic Postural tachycardia syndrome, Ehlers–Danlos syndrome, Endometriosis, Mast Cell Activation, and Hereditary Haemorrhagic Telangiectasia . In addition I have chronic kidney stones, currently battling abdominal pain, frequent cyst, frequent infections, and an extra kidney.

With the opioid endemic it is nearly impossible for most to begin an opioid for pain. Personally, I am allergic to the “alternative” medications such as Cymbal,Amitriptyline, and Neutron.

I can understand to a degree the opidoid endemic. But the other part of me does not get it. People should just accept the pain to some doctors.  Furthermore, those who do drugs will always find a way to obtain them.

I have had to be creative in my pain management. Pain can be dictating causing one to quit their job or miss evens. Weakness is common due to lack of movement/exercise. Moreover, pain causes mood disturbance such as anxiety and depression. Many chronic pain warriors struggle with painsomina which is insomnia due to extreme pain. It is all a vicious cycle. It also effects ones memory also known as brain fog.

Most times doing absolutely nothing is not an option. I have a lot of outside of the box pain tips and I will be starting a YouTube channel. I will be making a pain management video with all my tips. If requested I will also do a blog post on it.

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My Prednisone Journey

I talk a lot about Prednisone on my blog but I never shared an overview of my whole relationship with the medication. It has been a roller coaster like for most people.

Before we dive in let me quickly give you a  brief overview. By definition Prednisone is, “an analogue of cortisone,used as an anti-inflammatory, suppressed the immune system, and 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.  

I begun my journey with Prednisone in 2013. For the first few years I was off and on low doses of the medication but the time I spent off of it became shorter and shorter. At the time I began the medication there were a lot of undiagnosed illnesses.

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Right before I began steroids. 5’8” and under 100 pounds here.

 

 

 

During this time I ended up with a sever bladder infection that infected all three (yes you read correctly, all three) of my kidneys and threatened to hit the blood for four long months. Let me just say, after a four month long infection the body is never the same and neither are the illnesses. They did determine with the type of bacteria that the steroids indeed saved me from being in a more life treating position. I manged some how, to stay out of the hospital that entire time! Not sure I could handle a do over of that.

During this time my diagnosis of lupus became more concrete. Things were fine, which is a term I use loosely with a chronic illness, while I was on Prednisione. We took the proper precautions with my bone health and beginning a medication to take its place. Than we began to taper. All was well enough to be out of the hospital until I went to get my Benlysta infusion and was receiving my once a year bone infusion. I had a bad feeling as the Relcast infused. I began feeling a little unwell but the nurse assured me I was just anxious and completely fine. Except for the following morning I work up feeling funny, well, not really funny more like hit by a bus. The pain broke my pain scale. Movement hurt. I soon discovered I couldn’t get up and see straight. I was unable to eat or drink. Eventually I made it to Urgent Care who transported me to the hospital were I was admitted to the cardiac unit. Later on I was informed my liver enzymes were oddly high and over heard I may have POTS.

 

From that point forward tapering became a nightmare beyond my imagination. The following April I tapered down to 5 mg and a few weeks later landed admitted to the hospital again. This time I broke my liver enzyme record and most likely the record of the hospital my numbers reaching near 900s. I also get told I have UC. This time I could not eat for days. I was in the hospital for ten days. It was brutal.

The following January history repeats except for the fact that I ended up going to the hospital sooner for the pain so my enzymes were lower.

The doctor in charge of the taper shifts over time for various reasons. Each doctor made promises of figuring out how I could safely come off yet each has greatly failed. No one has made an honest attempt to help solve this problem therefore in the end contributing to its growth.

After a flare in March I was told I need to come off as soon as possible or my doctor will not continue caring for me. Such little guidance.

Tapering is overwhelming for a multitude of reasons. A gland shuts off while someone is on Prednisone. It must turn back on so that the person can stay alive but it takes time. The body goes through something like withdraw but it is rooted in the fact that the gland is not on and the body needs it to survive.  Tapering off too quickly can be deadly. Sending someone into an adrenaline crisis.

I have been in this taper cycle for five years. Each time I move a half a mg I feel as though I am dying with the intensity of pain. At times, it feels like the muscles are being torn apart and breaking. While the joints are being crushed. There are no accurate words to describe the abdominal pain. The fatigue with the process is hands down unique. Eating becomes a chore.

I began to feel completely hopeless of coming off the medication and figured I would settling for staying on 10 mg or 5 mg if possible. Anything so that I could actually live. I have with a lot of changes, hard work, persistence, and prayer made it lower for longer than I have in years but it is still an extreme struggle. I finally have hope by the grace of God to get off this medication. It is most ‘definitely a struggle daily and it is time to get some extra medical help (which is long over due) but I am making Prednisone progress. One day at a time, one sip at a time by God’s grace I am taking my life back. 

 

I will continue to blog about what is helping me on this journey but if you cannot wait to hear what it is please leave a comment with your e-mail address.

 

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!

Dogs!

This took much longer than I expected to write. Many people on the Chronically Hopeful Facebook page were interested when a service dog post went up about a month ago. Please understand that I have done research to the best to my ability. This is just a general overview. There will be additional service dog posts in the next few months.

There is a substantial difference between a service dog and a pet dog in the eyes of the law and social norms. Let’s begin with the basics. A service dog is for an individual with a physical disability.  These dogs are allowed to go anywhere and everywhere their human goes.Assistance Dogs International elaborates on this, “Service Dogs assist people with disabilities other than vision or hearing impairment. With special training, these dogs can help mitigate many different types of disabilities. They can be trained to work with people who use power or manual wheelchairs, have balance issues, have various types of autism, need seizure alert or response, need to be alerted to other medical issues like low blood sugar, or have psychiatric disabilities. These specially trained dogs can help by retrieving objects that are out of their person’s reach, opening and closing doors, turning light switches off and on, barking to indicate that help is needed, finding another person and leading the person to the handler, assisting ambulatory persons to walk by providing balance and counterbalance, providing deep pressure, and many other individual tasks as needed by a person with a disability.” There are many tasks a service dog can be trained to do. Additionally, service dogs can be paired with humans for autism and hearing.

Your pet dog is not allowed to accompany you in public without a specific reason. Many view a service dog as medical assistance or even medical equipment.

Service Dog Central provides some clarification on the differences between psychiatric service dogs and therapy dogs. “A therapy dog is an individual’s pet which has been trained, tested, registered and insured to work in a hospital, nursing home, school, or other institutional settings. The therapy dog and his partner visit to cheer patients, to educate the community, to counter grief and stress, and generally be good canine ambassadors within the community. Most therapy dog partners are volunteers, but some states recognize professional therapy dogs partnered with therapists and other mental health professionals.”

Psychiatric Service Dogs are generally for people with a mental impairment (these words are chosen to line up with the laws that are in place). A mental impairment in the case would include mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities. Anxiety, depression, and PTSD would fit under emotional/mental illness. They can be granted access in public places.

A partial listing of therapy dog organizations:
The Delta Society http://deltasociety.org
Therapy Dogs International http://tdi-dog.org
Therapy Dogs Incorporated http://therapydogs.com

On the other hand, emotional support dogs have very limited public access.

On the other hand, emotional support dogs have very limited public access. Emotional support animals provide compassion, support, and friendship to his or her owner. These animals have an irreplaceable role in their human life. Not only do these animals assist their humans emotionally but also improve physical health. Many studies support that animals lower cholesterol, lower blood pressure, lower triglyceride, reduced stress levels, reduced feelings of loneliness, and increased activity. Currently, my cats are emotional support animals. I have a special bond with each. Furthermore, they can sense when I am going to pass out, fall, or shake. Even so, they are not allowed in public. I wouldn’t bring them out in public either because that would provoke anxiety.

A multitude of agencies is out there. My first recommendation is to speak with your vet if you have one. Each agency is different. However, most share that the waiting list is long. Comparing agencies is vital. Furthermore, get as much information as possible on each one. Due to this reason, some people also find training agencies. Either your current pet dog (if he or she is qualified) or adopting a dog than the trained works with you both.

Some additional agencies include but are not limited to:

NEADS

NEADS (National Education for Assistance Dog Services, also known as Dogs for Deaf and Disabled Americans), is a non-profit organization and is based in Princeton, Massachusetts. Our Service Dogs become an extension of their handlers and bring freedom, physical autonomy, and relief from social isolation to their human partners who are deaf or have a disability.

Accredited by Assistance Dogs International, the internationally recognized governing body that establishes industry standards and practices, NEADS offers a wide spectrum of Assistance Dog services, including: Deaf & Hearing Loss, Combat Veterans, Physical Disability Classroom, Therapy & Ministry, Children with a Disability Children on the Autism Spectrum, Deaf & Hearing Loss, Veterans, Physical Disability and more.

Assistance Dog’s International can help you find a program closer to you. They have a variety of resources.

Service Dog Trainers A list of trainers across America.

I hope this information is helpful. Please share your pet’s name in the comments!

 

Med Changes

Chemotherapy. One of those words with plenty of weight. Plenty of assumptions attached to it. For example, only Cancer patients receive it, this is a  myth. It is only a word. Only a medication designed to assist an individual in some way. Autoimmune diseases are treated with low dose chemotherapy. Chemo suppresses the immune system and helps inflammation.

Personally, I have encountered three chemos to date to attempt to control my illnesses. First I did methotrexate self-injection. Than Mercaptopurine was added. (This combination is not advised.) I couldn’t handle that for long so we made the switch to  just Mercaptopurine.

I stopped Mercaptopurine the end of last month. Medication changes are challenging. Needless to say, it can increase pain and symptoms. It is a difficult medication to start and to stop. Though I am not a fan it did suppress my immune system some, therefore, stopping it increased pain. However, it was worth it because I have begun my journey with Remicade.

Remicade is a biologic which is received through an infusion. It can be used to treat Chrons, Ulcerative Colitis, Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, and Plaque Psoriasis. Remicade suppresses the immune system, similar to other medications used to treat autoimmune disorders. Most times, to qualify for a biologic an individual must fail other treatments or have difficulties getting off steroids. The Remicade web page provides additional helpful information.

The first three infusions are loading doses and are given every two weeks. I had my first Remicade infusion November 8th (but I have been on another biologic and received other medications via an infusion). Personally, I pre-medicate in the car on my way to the infusion center. An hour before I take Prednisone, Benadryl, and Tylenol. The infusion lasts a total of three hours. I had nurses and a PA adjusting the speed of the Remicade every few minutes. In addition, they monitored my vitals.I felt beyond wiped out afterward as if the life was sucked out of me.

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That evening I was extremely achy. In addition, I had high pain in the lower right side of my abdomen. I was in bed by nine pm. However, that is the extent of the side effects I experienced. The joint pain was slightly better for a few days. I get my second loading dose soon. Eight weeks is the time frame that an individual should start to encounter improvement.

My next infusion is in a few days. I am extremely tired. The pain levels have returned to preinfusion. The weather isn’t helping any. The pressure is dropping. Additionally, we are expecting a mix of rain and snow. All in all, I am ready for my second infusion. Things feel much more hopeful on Remicade.

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Ulcerative Colitis Update

This flare began about a week ago. My liver enzymes are high again, though not nearly as bad as in the past. The theory is that this is from my immune system attacking it. The major difference is that this time I am still on 15 mg of prednisone, which I also refer to as my safety net. The pain has been extremely intense this weekend. With these flares, it feels like being hit by a bus I know it sounds dramatic, but the intensity is hard to describe. The main issue is the abdominal area. Evey joint hurts, my ears ache,I have the chills and nausea. Of course, the fatigue is 50x’s worse than normal.

My Gastro retired last month and that was heartbreaking. She was the first gastro I had trusted and had compassion. I saw the new gastro on Friday and it was nerve-racking, to say the least. I am not a fan of seeing new doctors because my case is complex. I was relieved that this doctor had listened, was up to date on my medical mess, had some compassion, and was ready to start something new.

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Most of you know that in addition to Lupus and POTS I have Ulcerative Colitis. Eating has been a struggle when the Prednisone is lower than 15 mg. Currently, I am on a combination of two anti-inflammatories, Prednisone, and Mercaptopurine (a chemo also known as 6mp). The goal for any chronic illness patient is to come off Prednisone. In my case dropping to 5 mg or coming off means going into the hospital. This is a common issue for people with a chronic illness. I know I am not alone in this struggle. #It’s A Spoonie Life! Thankfully, I have been blessed and have not suffered major side effects from Prednisone. 6MP is my second chemo. I am not a fan. I have had no improvement on it.

With all that being said I got the extremely exciting news that I do qualify for a biologic (which I knew). And of course, my new gastro feels it is time to begin the testing and paperwork. Testing include normal labs CBC, Comprehensive Metabolic Panel, and Hep Panels. In addition, TB testing is required. At the same time, insurance paperwork is started. I will be on Remicade. I will be writing a Remicade blog post soon!

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A huge thank you to everyone who participated in invisible illness awareness week! I was honored to be involved, but I wish I could have done more.

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