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.

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But You Don’t Look Sick

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“But you don’t look sick..” A saying that chronically ill people hear way too often. For those who have recently meet me I look like a normal 21 year old girl. But my family and church family are able to see the difference in me.

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The girl who stares back at me when I look in the mirror is someone I do not recognize. That girl is not me. She has a rounded face, pale skin, thinning hair, and tired eyes. I am…or in reality was a girl with dark olive skin, bight and energetic eyes, thin, and tall with thick dark brown hair that most people mistake for black. I have changed drastically sense becoming ill. I am not the same girl physically or emotionally. Not all the alterations have been negative. It is difficult sometimes to be so different compared to who I was before I became ill. Medications have altered my body somewhat, but the majority of the physical changes are due to Lupus. At times looking through photos is difficult. I like who I have become. But the physical changes are hard to grasp. My body doesn’t feel like my own… it is like borrowing something that doesn’t fit right. Appearance doesn’t matter as much as it use to. It is more about feeling healthy and functioning; living again. I try to focus on this and the hallmark of what inwardly make me, Victoria. Some days it works amazingly. With no make up and hair up I feel like myself and I feel pretty.  Other days, are more difficult after layers of make up and many spoons wasted tears of frustration wash it away.

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“But you don’t look sick..” is never a comforting phrase. People might think it is a compliment, but it is not. It makes us feel like you do not believe how sick we are. Our outwards appearance, does not reflect the war going on inside of our body twenty four seven. Thankfully the destruction is not visible.

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Those who are chronically ill learn all the make up, clothing, and hair tricks. She learns to fake a smile. To be a ray of sunshine. To pretend to be a healthy girl. Behind closed doors, everything is different. The make up comes off, the hair goes up, pj’s on, and the tears flow. With her head buried in her pillow she wonders how she made it through another day thankful no one saw though her mask. Insiting that she doesn’t look sick only adds to her struggle. Your words weigh more then you know.

Your world drastically changes in every way possible when you are chronically ill. It is like living on another planet in comparison to how thing were when you were healthy. Adjusting is difficult. You need to be patient with yourself. Allow yourself time to adjust to all the alterations your illness has imposed. Remember, that there is much more to you then the person looking at you in the mirror. Yes you might look different and that is okay, you are still beautiful. In addition to physical beauty, you have a stunning personality.

How do you cope with the changes your illness has caused?

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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.

Brief Update & Summer

Originally I had a lot of blog posts plan for May and Lupus awareness month. Sadly, due to being in the hospital and trying to recover from it, I haven’t been able to blog at all. My body is still drained. I have been battling a lot of weakness and pain still. Sadly my treatment plan has been impacted by my hospital visit. I am no longer on  methotrexate or Benlysta. Not having those meds have negatively impacted me. Currently, I am on a lot of Prednisone. I am thankful for the help from it, but like anyone else I look forward to eventually coming off of it. I do really well on Prednisone in general. The only side effects I encounter are moon face, minor mood swings, trouble sleeping at times, and I clean a lot on it. In perspective, it is excellent. It has also helped me maintain my weight. My weight has stayed the same despite not eating for ten days. I am still seeing a lot of doctors and going through medical testing. Usually one or the other weekly.

Getting my strength back has been a challenge. I feel extremely run down; like I am dragging my body each time I move. I have had to rest so much due to the extreme weakness. Some days I feel as though the only thing I do is rest. It is frustrating.

Yesterday, I finally completed all my work for the semester. I am thrilled. My hope is to be able to work a lot more on my blog now. I am relived to be on break. There is not much I can do this summer due to my health. Because of my Lupus I get extremely sick from the sun which limits me. I will be utilizing my summer to prepare for the fall. I will be going away to school. The school is about an hour from my house, close to other family, and closer to my doctors. I am extremely excited. I have already begun ordering my text books for the fall semester. I enjoy going ahead with my school work. I find it works out best this way if I have a bad day I can rest more without it interfering with my school work. My plan is to read and outline as much as possible for my classes and to listen to related lectures on YouTube. I also have a nice pile of books to read for fun.

Hopefully, I will go back to posting regularly on here. My apologizes for not posting much, especially about Lupus awareness month. Thank you for your understanding. Sending lots of spoons, prayers, and hugs.

Share in the comments your plans for the summer.