Seriously, I Can’t Hear You

I can’t hear you. Could you please repeat that? No, I did not hear you come in. I am completely serious, though it is hard to believe at twenty-three. I previously blogged at my hearing loss mentioning a couple unstable theories. Shortly after, receiving my HHT diagnosis, I was told I needed my hearing checked. The doctor who relayed the message was skeptical because she had been on my case for a brief amount of time and was unaware that I had issues hearing. To be fair, the doctor who ordered it was never told either. Simply, because it never came up, furthermore, it did not seem relevant

I went through an intense hearing test while I was having no trouble hearing. I found out a few days later that I have extremly mild bilateral hearing loss. However, was not mentioned at the appointment, I am guessing because it is so minor. There isn’t anything to do, but it is a great thing to know.

If you went undiagnosed for any significant amount of time you understand the value of a reason for dictating symptoms. Though there are an overwhelming amount of questions at times without answers, having a name to the monster helps. The name doesn’t not by any means make the road any easier it just makes someone feel validated in their bodies rebellion.

 

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Saline Update

I got my second round of Saline at Chronic Care earlier this week. This time I got two liters over about four hours. It was much longer than I had expected. The staff there was fantastic. The doctors have set me up to have someone come in to do a safety check in my house to accommodate things for when I fall and I got another neurology referral.

I was impressed with my results following my first Saline treatment. I was able to shower without feeling dizzy, walk in the store twice, and did not fall for a week. Pretty amazing stuff! It was a 90% improvement with that treatment.

During this infusion of Saline, it was noted that my blood pressure had drop fairly low-mid 90s /60. I do feel a big difference, but some dizziness most likely blood pressure related. The dizzy spells improved about 75- 80% this time which is still excellent.

I have another infusion Monday. Then meet back up with the doctor a week later. It is a very promising treatment at this point in time, which I am hoping to continue.

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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Pictures of The Past

A picture is worth a thousand words along with a few dozen memories and emotions. Capturing the past the heartache of what once was bubbles over.  Sometimes, I avoid looking at my photos, but other days the temptation of a walk down memory lane wins. The days when laughter was plentiful and sleep was not vital.  Staying up half the night with friends was normal. And of course, anything seemed possible. Not knowing that all too soon minor aches would explode into full blown take over your entire life chronic illness.

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I look at the girl in those pictures overflowing with laughter and pure joy. The insecurities going through my mind as a teen now seem silly. Things weren’t perfect, but they appear that way. The past usually seems easier as we look back.  There are still days I miss the people who left me. The friends who said they would be there, but left.

 

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It’s true, you adjust to the chronic illness life, but little things happen that make you grieve your past. I try to not get carried away in the what if I wasn’t sick game or the things I miss. Everyone asks what you miss most, in reality, I doubt any of us can narrow it down to one thing. I miss how active I once was the energy. Being out in the sun or at the ocean. I miss dancing, hiking, and doing mission work. I miss my hair. Not needing to worry about passing out or running to the bathroom. I miss my old bad days.

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All in all most days I do well with being chronically ill emotionally. I have adjusted and know in my heart that God will use all the pain, symptoms, and every other little chronic illness thing for His glory. He has allowed Lupus and these illnesses to be a part of my life, therefore, I am okay with where I am. Yet, I am still human. I become anxious, overwhelmed, grieve, and ride the roller coaster of emotions. After last April, my emotions went on vacation, but they are back and we are learning how to live together once again.

To be honest, most days are hard in some capacity. Currently, this includes minor meltdowns, severe chest pain, dizzy spells, joint pain, and bladder pain. I have another halter monitor (I will do a review- if I don’t throw it in a lake first). A bladder infection with a side of kidney stones. To top it all off my summer class final is coming up. My liver is holding up though I am cautious due to the fact I need to taper off steroids.

This post is a bit long, but I will be doing a Bible Study update post to let you know more about online Bible studies, which I am excited about!

Can you relate to anything in this post? If so, let me know in the comments! You are the reason I share about my life as a spoonie.

Snow Day Update

We are getting all the snow we have missed earlier in the season where I live. My mom and I heard it could keep snowing until Monday. You never know with the weather. I am thrilled that my family is safely inside. I pray that you are safe and warm this snowy Saturday.

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The snow has never affected my pain levels- until this storm. Last February I had a POTS episode where I got hurt from passing out apparently aggravating and changing how my POTS reacts to things. This morning was a bit difficult including back pain and a migraine. Like many Lupies, my doctors question if Fibromyalgia is a part of my pain. Some doctors tend to blame everything on Fibro and downplay another illness causing chaos. Let’s be real it can only do so much and the medical field does not have enough education on it. I know many of you struggle with Fibro and my heart goes out to you. It is my prayer that doctors will take us more seriously and that more research will be conducted and better treatment will be put into place. Jumping back to POTS for a moment I did experience two simple falls recently irritating each hip. I am wondering if it could be weather related.

I wasn’t planning on the mini Fibro rant but it is relevant. Anyways. Update time. I have been out of the hospital for a while now. This second I am feeling great (Compliments of Tramadol).  I have seen a new Gastro. I am hopeful and a bit nervous about the switch but it absolutely needed to be done. The doctor was ready to put a new treatment plan into place and get things under control. I am back up on Prednisone, 25 mg. When I saw her about a week ago she also prescribed a Chemo. Two Chemos and Steriods seems like a lot to me. The option is excellent but not ideal. I have already had issues with my blood counts. Therefore, I have been researching other options. After hours of insurance calls, I have the name of a medication that does not interact with any of my other meds. It is a general anti-inflammatory. My hope is the doctor will agree to give it a shot. Either way, I am looking at about two months or more for the medication to begin working.

Either way, I am looking at about two months or more for the medication to begin working. The plan is to be off Steriods sometime in March. The combination of two Chemos and Steriods made me extremly emotional. Every little thing was giving me excessive anxiety. All I wanted to do was cry. And I did do that.

The increase has been a blessing. I am able to eat some and drink plenty. I can feel the difference now that my body is absorbing food and medication. I have less weakness.

Before the increase of steroids, my injection was making me feel sick. I am so grateful that it went much better last night. I look forward to the day that I am on a more stable treatment plan. It can also be nerve racking at the time thinking about life off of steroids. More than anything I want to be off. At the same time I know in my heart my body will be much different. It won’t be the same as before Prednisone. It will take time to adjust.

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Outside of the health roller coaster, I have been reading and focusing on Chronically Hopeful on Facebook. I got a 20 dollar gift certificate for Logos for my birthday. I think it is awesome. I got two books and a Bible Magazine.

Weather permitting, I will begin school Monday. I am taking History, Effective Speaking, Forensics, and Spanish.

Leave me a comment below, share how you are doing, what’s new and if you’re in college what classes you have this semester.

The Spoonie Life:An Update

It feels like the semester that will never end. My last final is this Tuesday. My symptoms have been flaring. Brain fog is heavy. I frequently forget what I am doing. Or just become confused for a few seconds. At times, my thinking is slower with pain or fevers. It is hard to let go of perfection; to accept doing my best with school. I know I have put in a lot of effort.

Frustration with the spoonie life, specifically with doctors is setting in…again. At times, I feel like I am screaming yet no one  can hear me. I present with scary symptoms. Everyone agrees I am sick yet no one will help me. Sorry Doc, feel better doesn’t cut it. I know I am not a typical case, it is going to take some extra work and I am sorry, but it is out of my control. I would love to be a cookie cutter patient, but that is not my reality.

I have three doctors with three different options and no real plan currently. Last week I had several frustrating conversations. The ‘head’ doctor for my abdominal issues called me yet he was not quiet long enough for me to speak. He wanted to do a scope. I hesitated. I have had over half a dozen scopes in a few short years. I had questions. I firmly believe as a patient you should have a say in what medical testing you have and you should have all the information up front. I explained to my other two doctors that if I absolutely need a scope that is fine, after Christmas. Monday, the one doctor told me it is unsafe to do a scope due to my pain (I don’t think that is a legit reason. I’ve had scopes while in more pain). For now, I have a CT with barium and contrast in a few days, nothing fancy. I am praying it will give them what they want in order to move forward with treatment.

Sometimes, I want to jump off of steroids as fast as I can, like ripping off a band-aid. I’d like to think it would make things simpler. But my body freaks out and that makes me nervous. I want to be off. No one has a plan of action or anything in the event that my liver go nuts and my body begins to shut down…again. Being stuck is frustrating.

College Chatter

“For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord.” Isiah 55:8

Many times we are convinced that we are following the Lords plans for our lives.We take all the proper precautions praying, seeking guidance in the Word of God, meditating, than we take a leap of faith only to fall flat on our face. What went wrong? We might never know the answer to this question. Perhaps the time we spent searching and planning enhanced our faith allowing us to enjoy deeper fellowship with God. Regardless of the reason when things don’t work out how we intend them to we are grieved with disappointment.

I began praying about my college journey in middle school. Than began my intense college and scholarship search in my sophomore year of high school. I wrote everything out nicely, I had a well though out plan of action.  Though I went off to the college of my choice nothing happened the way I planed. I got sicker and ended up back home attending community college online. Once again I made plans to go away to school this fall. However, things did not work out as I planed. The finances did not line up.

I spent two business days straight making dead end no answer phone calls. Running around in endless circles unable to get information. I quickly became overcome with anxiety and dread. I had no back up plan. It became evident that things weren’t going to work out. I pleaded with God for Him to provide for me. Than took a step back and asked that his will would be carried out in my life. I know that my prayers and preparations for this coming semester were not in vain. They allowed me to draw closer to God.

Emotions clouded my mind, as I tried to figure out my next step. All I could see was a dead end and failure. After discussions with various people, I made the decision to continue my education though the community college. It wasn’t ideal but I am still moving forward.

I was disappointed to a degree, but more annoyed that things happened last minute. Like anyone who is chronically ill, I desire to be as normal as possible. To be as independent as possible. At times I am completely content as I take baby steps forward. Other times I am irritated to no end. I am twenty one and I am so limited with what I can do. Currently I cannot work, cannot be on my feet for too long, and cannot drive. It is easy to fall into the trap of a negative mind set. It is essential to keep things in perspective and to acknowledge the blessings in life.I am grateful for the progress that I have made. I look forward to continuing to get stronger and becoming more independent.