Midterms & Chronic Illness

I just wrote the following blog post (yes we blog in my digital history class) to my classmates:

If this was my actual blog, I would be a big cheerleader and tell everyone how wonderful they did. So I’m going to a little off the book here and tell everyone how wonderful they did. I thought each of the projects were unique and exciting. I thought each of the projects showed that there are distinct interests and personalities in our classroom, and that excites me. I think there were so many interesting takes on how we were meant to interpret our assignment here. I think group work has its place alongside individual work, when done correctly, and I think these proposals were examples of how it can be done well. Literally all of them were something I was interested in in some way, shape, or form (especially the Korean War- because my grandfather fought there, and I happened to read it first).

As for the individual proposals, again, I want to be a cheerleader here. I get to spend the rest of my week telling students what they need to work on. As everyone has such different interests, I think it is so cool to see the different interpretations of this project assignment and I am so excited to see what everyone comes up with at the end of the semester. As we’ve been talking this semester about different ways to use digital media to enhance your work or spread it to wider audiences, I thought it was really neat to see different ways that everyone in class wanted to go about forming their idea, researching their topic, and creating their product. Although let me not lie, you all may me feel a little inadequate that my idea was not as well formed as yours were. So keep doing awesome.

Here is what I wanted to actually write, considered sending it to my thesis advisor/professor of the class/head of the department (he wears all the hats and survives- you go, Shapiro, go), then realized it doesn’t make a different:

If this was my actual blog, I would be honest here. One of the biggest consistencies I push on my blog is vulnerability. So that’s where I’m going to go this week. Reading everyone’s project proposals I don’t feel like I’m anywhere close to what everyone else has prepared. On my blog, I’ve been honest about my struggles with my health issues, and the last week has been the most difficult, as I had some serious tests done, and I’m waiting for the results to come back- it could be nothing, but it could be something. It also has made me question what I want to do with my life if it is “something.” I’ve wanted my masters for years. And some of you in this classroom are busting your ass for it. I want to be at that level. But I don’t really know what to do to get there. And I’m struggling to juggle all the stuff I do have on my plate. So this is me sharing. This is me saying yall kicked this assignment’s butt, and I am so proud of you, and telling Nick thanks for helping me when my first draft contribution to ours wasn’t up to par. If this was one of my students in my situation, I would tell them to ask for help from their colleagues and from me, so here I am; how do you do it?

I don’t want to be the whiny person. I don’t want to quit. But I am also overwhelmed. I don’t know how to finish this one strong. I don’t know how to do ALL the things. Venting here. 

 

Health Update & The Spoon Theory

When I started this blog a few months ago, I intended to (in part) keep track of my health; I was imagining things were moving towards healing and me feeling better. Unfortunately that has not been the case. You may have seen some posts on social media asking for prayers/good thoughts/good vibes as I’ve been dealing with some health issues, so I wanted to take a few minutes to update everyone as to what’s going on with me right now.

I started a medication that should have helped with both my fibromyalgia and my UCTD, in November. The medicine can take 2-6 months to take effect in the body. Within 3 months I felt like I was seeing a difference, and feeling better, but other symptoms had started. Unsure what was causing these symptoms, I was pulled off the Plaquinil in mid January and told to wait to take anything to treat either the fibro or UCTD until we had a full health picture.

December was when I really started to see the new symptoms causing problems. They were (and still are) affecting my life: work, physical fitness, weight, sleep patterns, ability to fulfill prior commitments. I won’t detail what was going on because it’s a little TMI. But, it was difficult to make it through work most days and I lost about 4 pounds in about 5 weeks- which to some of you sounds great, but for my frame is not normal or healthy. My PCP was not helpful and finally in late January when I saw my rheumatologist I received a referral to another specialist who could help with what I had going on. The GI has run a plethora of tests, none of which has come back conclusive to any one thing causing these ongoing symptoms; we were able to eliminate any cancer in my GI tract though, so at least there’s that. He has put me on two new medications and I’m waiting to follow up on those in April, although I’m not convinced they’ve made much of a difference. He did say he didn’t think the Plaquinil was the issue and allowed me to begin taking that again.

Coming on and off of Plaquinil has messed with my health and emotions quite a bit. I’m hoping it doesn’t take the 2-6 months to take effect because if so it’ll be April or June before I start feeling better. And if you guys don’t understand this when I hurt, then I don’t sleep, and when I don’t sleep, then I hurt more, and then I don’t sleep more, then I hurt more, etc, etc. It’s a really lovely cyclical form of torture.

On top of being unsure what all is going on with my body, I had a really bad flare on the 10th of this month. I let it go for a few days, before seeing my rheumy on the 16th. I woke up on the morning of the 10th and could not walk properly because my left foot was swollen and it hurt to put pressure on it. My assumption was that I had hurt it while working out or had slept on it wrong. I went to work the following week with it wrapped, in a walking boot left from high school, or both, trying to keep pressure off of it, hoping the swelling would go down. I convinced myself based on the area of the pain that I had a stress fracture or a bunion and started buying and using bunion pads and moleskins. When I saw my rheumatologist on Friday morning, he took a look at my foot, and gave me what may not have been great news, but did explain what was happening. I had a flare, which in some people can last weeks; I am used to flares in my back, neck, hips, knees, not my foot; but my foot was experiencing inflammation (seemingly from high levels of stress, and the switch ups on medications, and lots of tests that required prep before hand) and the joints were so inflamed it looked like my toe had slightly come out of the joint. So he pulled it over, stretched it, and gave me some medicines to help fight the inflammation and get the flare to go away… we aren’t quite there yet, and today is Tuesday….so it’s been a long few days.

Before leaving his office, he and my health coach felt the need to talk to me about my stress levels and what it was doing to my body. I was told I need to start operating under the spoon theory. This means each day when I wake up depending on how I feel I have between 5-7 spoons (some days I might have more but for now I need to operate under the assumption of so few spoons) and each activity that uses energy takes away a spoon that I can’t get back for the day. I am not allowed to borrow spoons from the previous day or the next day, not knowing how my body will feel and how many spoons I will receive the next morning when I wake up. Once my spoons are gone for the day, I am not allowed to use energy on other things, I’m done for the day. So I have to learn to prioritize. I have to learn to take care of my body. I have to learn that I cannot do all the things, all the time, for all the people.

Yesterday I tried the spoon theory for the first time. And it was really hard. I got up after not sleeping much the night before and felt like I maybe had 3 spoons, maybe more, but definitely not 7, 10, or 15. I decided to push through my day anyways, try to borrow some spoons I might not have used on Sunday, and maybe steal some from Tuesday. By about 1 pm I was done for the day. I was exhausted. I felt like I couldn’t think straight. But I had more to do. I had another class to teach, I had a class to attend, I had a meeting to play secretary at, I had tests to finish stapling and preparing for today’s test, I had emails to answer, a license renewal application to work on, a PD module to complete, a paper to write, a presentation to prepare, I needed to shower and dry my hair. So I kept borrowing spoons and hoped a quick yoga session would restore me at least one spoon…. Hint….I love yoga and it was great, but it was not enough to replenish my energy storage room of spoons. By the end of last night, I was miserable. I thankfully slept better last night than the night before and woke up feeling like I have a few more spoons today. But I know adjusting to limited amounts of spoons a day will not be easy for me. I am Type A and I want to do all the things for all the people, but I physically cannot at least for the time being.

So for now, I work on using my spoons wisely, I prioritize, and I stop when I can’t handle anymore. And for each person who has asked “what’s next” after Saturday did not end the way I expected, I don’t have the answer for you yet, right now I’m working on counting spoons….but I promise as soon as I figure it out, I’ll let you know, but I want to make sure it’s worthy of spoons before I do it.

Feeling bad for being sick

“But, you don’t look sick”

You’re right, I don’t look sick, but I am.

And I feel bad for feeling sick. I feel like I am somehow inconveniencing others by not feeling well. Or when someone tells me how crappy they feel when they are sick, I feel guilty to say that I feel bad as well.

Here’s what a typical day feels like for me. (If you don’t care what the symptoms for me are and just want to know what I’m whining about today, skip down a little farther).

I wake up exhausted, my back/shoulders/neck hurt while I get ready, I go to work, I’m still tired, I get myself stressed out over work and my back/shoulders/neck/head hurt worse than they did when I woke up, I work out, my back/shoulders/neck and then my shoulders/hips begin to hurt, I foam roll to help the pain, I attempt to go to sleep and anxiety and pain keep me awake or wake me frequently through the night.

I don’t wear make up because I cherish ten extra minutes of sleep and hate the extra effort.

Some days, if I’m having a super bad day, I get migraines instead of normal headaches. 

I have headache medication but it’s to treat the problem, not prevent it.

When my muscles hurt, the best way I can describe it is like someone clawing through my muscle fibers/nerves. 

I have anxiety, I worry about more than I ever should. I try to pray verses of peace over myself, but a lot of times it doesn’t do much to help. 

I don’t sleep. I lay awake hurting. I gradually grow more annoyed that I’m awake and then that also makes me unable to sleep. 

I foam roll, daily. It’s supposed to help fibromyalgia, it works temporarily, then the pain comes back. 

I keep a pillow in my desk chair, and try to meditate during lunch, to help my pain and my anxiety. If you don’t know, meditation is really hard to get in to. 

I’m tired, almost constantly. I’ve tried life with and without caffeine to see what works best. Neither help the problem, really. But, if you ever need a good gift idea, I collect coffee mugs, because coffee is one of my favorite things in the world. 

I often find myself in a bad mood because I’m hurting and I’m annoyed at my own body, but I (admittedly wrongly) often take it out on those around me.

Some days are clearly easier than others. I’m on two new medicines. One is definitely working. The other, it could be March before it begins to work. Yet the doctor who diagnosed me with fibro & UCTD (see last post) guarantees they will work. 

Nobody around me really gets what I’m going through. My best friend, (hope you’re okay with me saying this, B), kind of gets it. She also has a chronic illness. We understand the frustration and the pain, but we do not have the same thing, so it is also hard to relate. Caleb listens to me complain or explain my symptoms, but because he doesn’t have it, he doesn’t fully get it. My parents/siblings/grandparent have watched me suffered for eight years, they’ve seen me feeling the “best” I have, and they’ve seen me feel awful, but they still don’t “get it.” My doctor, as awesome as I find him, has studied this in medical school but he doesn’t have it, so he can hear my symptoms but he still doesn’t “get it.” My students and coworkers, (love y’all), probably don’t even know I have medical issues, and they don’t get it. There’s one human who gets it, because both illnesses are different for every individual, and that’s me. God gets it, but sorry his intellect is a little above everyone’s here.

Also, please stop asking why I don’t wear make up. It’s rude. I don’t feel like it. Leave me alone. Maybe I also kind of like the way I look. 

I get sick like it’s my job, sorry I just laughed at myself, because one time a doctor actually told me to expect to get sick if I wanted to be a teacher. But anyways, my immune system is low. I get sick frequently and it sucks.
I feel bad every time my parents help me with a medical bill.
I feel bad every time I get sick because I feel like it’s a burden.
I feel bad every time Caleb or my parents or my brother or whoever does something for me because I feel like it’s annoying.
I feel bad when someone tells me how they’re feeling and I don’t have a great response. So if this is you, I’m sorry.
If you hear me complain a lot, I’m sorry.
Basically this is just a rant of saying I’m sorry for being sick and if I’m not the best on empathy.
To those of you who are supporting me on this crapstorm journey, thank you.

Being diagnosed

This will be the first post about being sick, but it will not be the last. Yet, even as a I write this, I already feel guilty for saying it. There are people in this world who are far more sick than I, but I am sick.

It has been eight years since I started having symptoms. Eight. Years. That is one-third of my life so far. It will be another 70 years give or take, depending on how long I live, before I find relief. There is no cure for what I have.

Less than two months ago, I was diagnosed with Fibromyalgia coupled with Undifferentiated Connective Tissue Disorder. So I have a pain disorder and an autoimmune disease. I’m not yet 25. That’s a lot to handle.

I was sixteen when I started having symptoms. It started with a chronic pain in my upper back. Then it spread to my neck. Then I started having headaches…then those turned to frequent migraines. I had multiple doctors, across different medical specialities, tell me that they could find nothing wrong with me. When I was 19, I was diagnosed with myofascial pain syndrome (referred to as MPS), which mimics fibromyalgia.

In the fall of 2015 my pain spread to my shoulder and hips, I had multiple MRIs on my shoulder that were inconclusive. I asked my neurologist who was treating my migraines and MPS, if I potentially had fibromyalgia, to which he responded “That’s a trashcan diagnosis.”…. so I went on with the pain spreading and worsening in severity. MPS is not supposed to spread, by the way. The more I hurt, the less I sleep, then the more I hurt from lack of sleep…it was, and still can be, a vicious cycle.

I went back to the neurologist’s office, seeing a new NP, as my previous neurologist retired. She agreed with me that I was doing everything right. I was eating right, exercising, sleeping, foam rolling, taking medication, and yet my issues were still worsening. She referred me to the rheumatologist.

On September 29, I finally met my rheumatologist. I showed him a list of symptoms and his immediate response was what I had been asking for months. Fibromyalgia. He then did a full panel of blood work to check for autoimmune diseases, because they often go alongside fibromyalgia.

Two weeks later, I went back. My inflammation markers were high enough to potentially be lupus, but other symptoms were not consistent. He instead diagnosed me with Undifferentiated Connective Tissue Disorder (UCTD). Neither fibromyalgia or UCTD are curable. Treatable. Not curable.

I have begun a treatment plan. I have started new medications, one will end two weeks from tomorrow, the next may not take full effect until March, but I have been guaranteed they are what I need. I have started doing yoga daily. I have started practicing meditation, which is actually frustrating. I’m trying to eat what my body agrees with. But I will never be curable.

So here I sit, typing, tired, and annoyed. I want to enjoy today. I get to teach one of my favorite things. But I am tired, and so my shoulders hurt, and inevitably my head will probably begin to hurt as well. It is frustrating. It gives me anxiety.

But yet, I do not LOOK sick. I just feel sick. So that is where my next post will pick up.

* WordPress does not like the words myofascial, fibromyalgia, or rheumatologist. It has tried to change them way too many times while I wrote this.

Typing With One Hand

I sit in another classroom, watching another teacher with her students, and I appreciate the relationship I share with my current students. It has been hard to be grateful lately, I feel guilty admitting this, but it is the truth, and I want to be vulnerable and be truthful here.

It was a really great reminder that in a Sunday service a few weeks ago, the pastor reminded us that even a mustard seed faith counts. Doubts are normal. Trails are normal. Mustard Seed Faith Counts. Let me say that again. Mustard. Seed. Faith. Does Count. So there is where this blog site name comes from.

I chose to start this as a way to process some of the things I am dealing with. It may be read, it may not be, but either way I am fine. God brought me to it, and he will bring me through it, but I need to process the things he has brought me to.

Life has been busy and life has been hard. A little over a month ago, I was diagnosed with two conditions that may never be cured. I had surgery on my hand (that I write with), from an accident that happened almost a year ago. I have had to stop lifting weights and change my workout routine drastically as a result of the surgery. I will start Occupational Therapy later this week….I hate OT and PT. Most days the fatigue from my chronic illnesses make it hard to keep my eyes open through throughout the day. The news I see daily concerns me. The things I hear some of my students say concerns me to the point I lay awake at night- I hope to be a safe place for them and to prepare them for the future and it makes me crazy to think I may be falling short. My anxiety has increased significantly. Multiple people I trusted and whom  I considered myself close with have hurt me in the last few months, and my tender heart has hurt in ways I didn’t know that it could.

Possibly the most painful…Some days I question that God is listening when I pray. I know he is there, but some days with things being so hard, it can Feel like he isn’t.

As I write this, I fear it sounds negative. There are positive things in my life. I was accepted into graduate school at a university that I love, and I am beyond excited about beginning my master’s degree. Multiple awesome organizations have opened their doors to me to volunteer with them as Miss Capital City. I have found a renewed love for yoga. My dad has been doing great as he heals after his procedure in August (more to come on this later). My boyfriend, who is also my best friend, has been super supportive of my job and volunteerism. I have a beautiful sense of community among two of my three classes, and they manage to make me laugh on a daily basis. With the help of my family and friends, my team for the AFSP team raised over $1200 for the Out of Darkness Walk. I assisted the HPA Charlotte with collecting 754 pounds of food for Second Harvest Food Bank (these are just two wonderful events I have been involved with since March). I have been exceedingly proud of the way my title has allowed me to help my community. My sister flies home tonight from her new home, and I am so excited to see her.

I know that I have a tendency for pessimism, and I often look at the bad rather than the good. One of my devotions last week called me to be grateful. I hope here to write about struggles but also the things I am grateful for.

So I want to end today with a few things.

  1. I am grateful for you, that you are alongside me for this first post, and have made it this far into it. I hope maybe you will join me again.
  2. I am thankful for the fact I will spend this holiday in warm homes with the people I love.
  3. I am thankful for a job, that although challenging, I also enjoy, and that pays the bills.
  4. I am thankful for friends and family who support me in all of my endeavors.
  5. I am grateful for a program that has allowed me to pursue scholarship, service, and success.
  6. I am thankful for the best friends that a woman could ask for. I love you guys so much- even if you don’t read this and never see this, I hope you know how much you mean to me.
  7. I am grateful for four beautiful fur babies who let me love them like crazy.
  8. I am thankful for being able to receive the medical care that I need.
  9. I am thankful for a Father God who has saved me by grace and looks on me as His Beloved.
  10. If you know me, you know how true this is. I am super thankful for food. All the food. Especially dessert, peanut butter, coffee…I could keep going, but that would be digressing.

Lastly, if you are reading this, I want to connect with you, message/email/comment and tell me- how can I pray for you? And/or, what are you thankful for this Thanksgiving week?