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[myimmunesystemsucks]

Lesbians with chronic fatigue you are worthy of happiness

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onion not even doing satire at this point

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[myimmunesystemsucks]

5/18/2023

In January or February of this year I contracted COVID-19. I didn’t end up extremely sick, thankfully. I just felt like I had the flu. I’m thankful that nothing worse happened because I don’t have a great immune system (the title of my blog explains that). I think that because I was vaccinated and had a booster shot, I was better off. Around this same time I got engaged to my boyfriend of 10 years.

I haven’t had any big, notable events in my illness. I have been getting infusions of Rituximab every 6 months. The first few times I got an infusion, I had a reaction to the medication. My doctor told me this was normal because my body doesn’t understand what I’m putting in it. My throat would get itchy and swollen during the infusion. They combatted this by slowing down the rate of the medication. They also give me IV Benadryl and that helps a lot too. However, the Benadryl makes me a little loopy. I end up slurring my words and taking a nap most of the time while watching Animal Planet on the tv.

The one thing that has been very hard for me lately is that I can’t talk to any of my doctors about my joint pain because they automatically assume it is related to the fact that I am overweight. One of my doctors wanted to refer me to a physical therapist and I laughed. No thanks. I’ve done that before in the past. The only good part about it was the time that my physical therapist gave me a back massage after I did my stretches. I have lost a bit of weight but I’ve reached a plateau because I have been so busy with school that I was not able to exercise. I also obtained a job in July of last year that requires me to do a bit of physical work. It’s becoming a little too much for my body but at least it makes me physically active 3 days a week. Now that I am out of school, I am considering going back to doing low impact workout videos online. We will see how that goes because my depression has been hellbent on preventing me from doing productive things.

Sometimes I get mad when people who don’t have a similar illness try to comment on my pain. They try to tell me to change my diet, take essential oils, etc etc. I really don’t appreciate comments like that. I used to actively ask for support from others but now I don’t really say anything because I don’t want to hear opinions. When I say that I want support, I mean that I want it without opinions and suggestions. I don’t want opinions or suggestions unless I specifically ask for them. I’m even a little skeptical of people with my illness giving suggestions because I don’t know how true their statements are. Not everything works for everyone. People are all very different in the way their bodies work.

The last thing I wanted to talk about in this post was how I feel going to regular doctor’s appointments. I am referring to specialist appointments and my primary care doctor. My chronic illness has not only caused physical pain but also mental pain. I think I must have some trauma from going through the painstaking process of getting diagnosed. Anyone who has a chronic illness knows how terrifying it is to go through hundreds of tests before they can begin to consider treatments. There is a feeling of horror as your body rips you from the inside out. No one can see your pain besides you. Everything looks normal from the outside until it is too late.

Am I faking it? Am I losing my mind? Are my symptoms real?

Just as I am starting to heal the hurt inside of me, I find the wound reopened when I go to doctors’ visits. I felt “normal” for about 6 months and began to go back to my life. When I go to the doctor, I have to get more blood work done and tests. It “triggers” those old feelings of terror, trauma, and helplessness. I sob a lot after many of those medical visits. But I usually don’t let anyone see my tears because I know they wont understand. I only let my fiancé see me cry about my illness because I feel okay being vulnerable around him. I’m afraid of letting people know that I feel suicidal when Pandora’s Box opens and I see a glimpse at my reality. It feels good to put my feelings in this textbox, even if it doesn’t mean anything to anyone. Maybe my toxic thoughts will be released from me by writing them down.

- Callie.

[myimmunesystemsucks]

2/11/2021

I found through many months of trying to get off of Prednisone that the injectable form of Methotrexate that I ended up switching to was not working for me. I was still suffering. My rheumatologist told me that I was at the maximum dose that they could try for me, so I was going to have to try a different treatment for my illness.

I've felt so defeated. I've been trying so hard to lose weight and gain some kind of self confidence. A lot of people have tried to make me feel lesser and constantly underestimate my ability. I've studied a long time to become competent enough to start working in the Forensics and criminal justice field. A lot of people don't think I'm smart enough and think that the information they get from political posts on social media are the truth rather than the scientific fact I've studied for so long. I think there is also internal bias because I am female. Many people still believe that women aren't smart enough to be doctors or scientists. I've functioned out of spite for so long because I wanted to show these same people that I didn't want to be a house wife. I wanted to make a difference through studying and applying my studies. I’m two semesters away from graduating and getting my Bachelor’s of Science. I want to go on and get my Master’s Degree some day. I am currently taking five classes and trying to maintain all A’s if possible. I just want to do well.

I haven’t been able to get a job because I’m not sure if I can even handle a job. I’ve thought about applying to some cannabis dispensaries in my area because it would be something I am knowledgable about. Unfortunately, I can’t do that until I’ve gotten vaccinated. I can’t take the risk of getting COVID with no immune system. Society makes me feel like I’m not a productive citizen without a job and I think this thought is always in the back of my mind. I beat myself up a lot about it. I think about how my family must see me in their minds: jobless and with no income. I don’t want to be all “woe is me”. I just want to express the things that have gone through my mind. I try to react to my thoughts with, “Society wants you to work yourself to death and that is not how humans are supposed to function”. I know this is a true statement but no one really seems to understand this statement. Capitalism.

Today, I found out that my insurance approved a new medication for me. Every six months I will go to an infusion center and get IV treatment for my autoimmune disorder. This treatment usually takes several hours but it has been life changing for a lot of people. I will be more susceptible to infections and illness (like COVID). But I won't have to worry about my hair falling out anymore. I will also be able to get off of Prednisone and hopefully start to lose more weight. If this treatment doesn't work, I don't know exactly what's next but it will probably involve medication that is slightly more harmful as side effects go.

The only way is forward. All I’ve ever known is forward. I’ve been trying to work out almost every day for 15 minutes to 30 minutes. I can only do as much as my body lets me. Today was one of those days where I could only work out for 15 minutes because my body is so tired. Sometimes I feel so weak when I can’t work out as much as I want to. I just want to feel accomplished in some way.

I just want to die feeling accomplished.

[myimmunesystemsucks]

10/21/19 - Advocating for Yourself

I’ll never forget when I called my doctors when I was in Edinburgh and told them I had Vasculitis. A nurse on the other end laughed at me. I felt humiliated and sad. Well guess what - I did have Vasculitis and needed immediate treatment. I’ll never forget how she laughed at me over the phone. I wish I had gotten her name so I could have spoken to someone about how she treated me.

The thing about all of this is that you always need to advocate for yourself. I was too shy and polite to yell back at her over the phone. What I should have done is asked for her superior so I could tell them how she laughed at my case. I should have pressed her until she broke.

If you ever think someone is underestimating your symptoms, let them know. You know yourself better than they do. You know your body. If they still treat you like garbage, tell them you’ll be going to another doctor. That’s because you WILL go to another doctor. Seek second opinions if you think something isn’t right.

Don’t be polite. If someone is writing you off, demand for what you need and want. Demand you get proper care. Don’t be polite just because it’s “the right thing to do”. You deserve better. Be inconvenient. Make them run the proper tests rather than assuming their assumptions are good enough. Don’t even settle for “good enough”.

Yes, it’s all exhausting. Fighting constantly for the right care is exhausting. I’m always thinking, “Why do I keep going?”. But the truth is that by fighting for what I deserve means I could potentially help someone else suffering with the same thing. Maybe someone with the same symptoms will receive the right care when a pattern develops because doctors and nurses will recognize the symptoms. Maybe medical professionals will have more experience and research to assist other people who need help rather than ignoring their symptoms (like they’ve ignored mine in the past).

You’re not just helping yourself by fighting, but you’re helping other people.

- Callie

[myimmunesystemsucks]

10/17/19

A few more days have passed and I’ve gotten some answers. But those answers have raised more questions. I’ve felt more sad lately than anything.

On a Friday after I had a breakdown at school, we not only saw the eye doctor for my red eyes but also to speak with my rheumatologist who had some news (more on that later).

I went to the eye doctor a week ago because my eyes were getting better. I was told I could stop the dilation eye drops and taper off of the steroid eye drops and medication. As I started tapering my eye drops, the Scleritis came back. I went back to the eye doctor for my eyes on that Friday I was telling you about. They had become so red and irritated. They burned when I opened them. My eyes were so sensitive to light that I often had to wear sunglasses indoors.

The doctor told me that my inflammation in my eyes looked better than before but obviously I needed to keep using the steroid eye drops for a few more weeks 4 times a day. I’ve been doing this and I’ve noticed significant improvement.

Now for the rheumatologist story.

He said they found blood and protein in my urine, so they had to have me take a 24 hour urine test. For those that don’t know, I had to pee in a gallon jug for 24 hours and then return the jug to the lab. I think it was one of the most humiliating things I had to do besides gym class. The results have come back but we haven’t gotten to speak with the rheumatologist yet.

They also wanted blood work because they think they know what is wrong with me. It’s not officially diagnosed. The blood work will tell them what medication I need to be on to suppress my immune system. I still have to read the paperwork on the two medications because I’ve been silly and haven’t read them yet. Oh well. Those close to me know my habit of procrastination.

They think I have a rare condition called Granulomatosis with polyangiitis. It’s inflammation of the blood vessels. It explains so many of my symptoms. It can cause problems in so many organs and potentially restrict blood flow to them. My rheumatologist told me not to google it. I saw why because I did google it. If you tell me not to do something I will do it.

“Untreated generalized or severe GPA typically carries a dismal prognosis, with up to 90% of patients dying within 2 years, usually of respiratory or renal failure. Even non-renal GPA carries a mortality rate of up to 40%.” (Link).

I guess it’s good I’m getting treated. I might have to get a kidney biopsy which doesn’t sound fun when you google that too.

I will make a separate post about my condition if you would like to know more about it.

- Callie

[myimmunesystemsucks]

9/24/19

I think people forget sometimes that my autoimmune disorder is genetic and not a representation of my health. I also think it’s easy for people on the outside to judge something they don’t understand completely. I can’t judge someone else’s situation because I’m not them. I can try to sympathize for them but I won’t ever really understand exactly what they are going through. We are also all imperfect individuals. You can point fingers at others and their wrongdoings but the honest truth is that it’s important to point our fingers at ourselves once in awhile. We have to work on ourselves rather than tell others what we think is wrong with them. If we put as much energy into changing ourselves as we do finding flaws in others around us, we could really change something in the world. What I mean is that I’m busy working on myself in a positive way and I think others should try it sometime.

Last night I got my eye medication. Today I’ve stayed home from classes to see how the eye dilation drops blur my vision. In order to take notes in class I’m probably going to have to go buy reading glasses. Overall it’s important to be caught up in my classes so I will have to cope with the blurry vision and light sensitivity. Things seem to be okay but the dilation drops burn my eyes so much. I also have already poked myself in the eye with the eye dropper.

This morning I went to the lab to get blood work done for the eye doctor and my endocrinologist who takes care of my thyroid issues. They sure do take a lot of my blood.

That’s all I have to report today for medical updates.

- Callie

[myimmunesystemsucks]

9/23/19 - History

This is my first post. I want to keep making posts as I have updates on my autoimmune disorder(s) and hopefully I will be able to. I never thought things would become as serious as they have.

I was diagnosed with Hashimoto’s Thyroiditis in 2015. That was when I was about 15 or 16 years old. Hashimoto’s Thyroiditis is when the autoimmune system attacks the thyroid. It causes hypothyroidism. Because of this disorder, I have found it hard to lose weight. I’ve been exhausted all of the time. I have to go to an endocrinologist frequently as well as have blood tests. Depending on how the blood tests come back, I may have to have my medicine increased. Over the past few months I have found that with each new blood test, I have to get an increase in my dosage. I noticed this was strange but I had other things in my life that were keeping me distracted.

In May, I developed severe stomach pain. It felt like my upper chest was burning and stabbing. I tried to ignore the pain because I assumed that I just had acid reflux. I took a variety of medicines but the pain stayed. One night after visiting with my best friend, I begged my mom to pull the car over so I could throw up. The pain was so bad that I felt nauseous. My mom ended up going with me to the emergency room that night. I had blood tests done. I had a CAT scan. They gave me the pain medication. After following up with a doctor at my local doctor’s office I was told to take 40 mg of Omeprazole everyday. I made an appointment to see a GI doctor not long after for additional tests. Ultimately the doctor thought I might have H. Pylori and an endoscopy would have to be done. I couldn’t eat any food or my stomach would hurt worse than before. I started to lose weight.

I had the endoscopy done as well as stomach biopsies. There was no H. Pylori or any kind of other stomach disease. The doctor reported that my stomach looked irritated but that was it. My symptoms had started to go away but I had developed a pain in my chest and back. The pain only happened when I tried to take deep breaths, sneeze, or yawn. It felt like my muscles were preventing my chest from expanding. I didn’t tell many people about this. I only talked to my doctor about the stomach issues. He assumed I just had an illness that went away.

The chest pain slowly went away just like the stomach pain. I noticed my right eye began to become very irritated and sensitive to light. I wrote it off as allergies and that, too, went away. Unfortunately, these random illnesses were going to come back.

After my doctor recommended stopping my Omeprazole, my stomach issue came back. This time it was worse. I found that I was constantly throwing up. I had lost over 30 pounds in the past few months because I couldn’t eat. I was throwing up only stomach acid because there was nothing else to throw up. I had turned a grey color and I was exhausted. I decided to try to start on the Omeprazole again to see if I needed it for my stomach. I noticed that once I started taking it again, the symptoms went away. I was glad because I had a trip to Scotland with my boyfriend and his family. I couldn’t miss that due to some dumb illness.

The night before we left, my right knee was bothering me. It just ached terribly. I assumed I had moved it the wrong way and pulled a muscle so I took it easy until the next day when we left. I got on my flight with my knee hurting. The man next to me on the plain decided to spread his legs into my foot room. I had to squish my legs against the seat. It made my knee hurt worse because I could no longer spread my leg out straight. I sat the whole flight in agony and just wished that the flight would go faster so I could get up. However, when we landed, I could barely stand. I hobbled slowly down the aisles of the plane to get off. We found out that we had to leave the plane by descending some stairs where a bus would take us to the airport. I gripped onto the railing of the stairs and prayed. I’m not a religious person but I prayed then and there. I didn’t want anyone to know that I was in pain. I hate telling people when I’m in pain or struggling. I hate asking for help.

Making it through the airport was okay but I was limping behind everyone else. The worst part was getting on the London train. The stops were quick and we missed our first stop so we had to walk to our Airbnb which was 15 minutes of walking. For me, it was hell. That walk showed me how strong I really was. I cried so hard as everyone left me behind because I could barely walk. My heels hurt from my shoes rubbing against them. My feet had begun to throb and burn. When we finally made it to the flat where we were staying, I thought I was going to actually pass out. I had never passed out before but I swore I was close. Little did I know I was going to experience it way worse than this time.

We took a very claustrophobic elevator to the fourth floor of the flat and found out that the last people who stayed there forgot to leave the key behind. So we had to wait an hour for the people who owned the Airbnb to come with the key. We stood on the fourth floor with no air conditioning waiting for the owners. A friend offered me some of her water so I accepted it. I was so thirsty from limping. I drank the water very fast. Moments later I was also asking for a bag to throw up all of the water I had just drank. Don’t worry everyone, I only threw up water. But it sucked. Don’t drink water very fast when you are thirsty. Your body doesn’t like it. This is a warning from me to you.

I sat down on the carpeted floor in the “hallway” and I was much more comfortable. Unfortunately, it took me a long time to get up off of the floor. My legs literally would not hold my weight anymore. It took so much willpower to force myself up. I’m overweight but I’ve never had that much trouble getting up from a floor before. I was able to hold on to my boyfriend to get into the flat. We went into our room and I decided the first thing I wanted to do was shower since I was covered in sweat. This is when I discovered the spots.

I took off my clothes in the bathroom and discovered that I had red spots all over my legs and feet. They went up to my knee. I had the same kind of reaction with heat before so I wondered if sweating that much had caused my legs to revolt when it came to the heat. I just knew for certain that my feet and legs really hurt. Getting up from sitting on the toilet hurt. It had never hurt before. Getting into the shower and climbing into the bathtub was a task that required a few minutes because I couldn’t bend my knees very well without being in a lot of pain. I told my boyfriend that I was not concerned about the spots.

I went back to my room and it took almost ten minutes for me to get onto the bed because the bed was high off the ground, I’m short, and it hurt to move my legs. Getting on and off the bed for the few days we stayed there became a challenge. I would imagine the scene in Kill Bill where Uma Thurman is laying in the backseat of the truck trying to get her big toe to wiggle. I was just trying to get my legs to move even when my body begged me to stop.

Later that day I asked my boyfriend to get his mom who is a nurse. I wanted her to look at the spots on my legs. She and her husband (both nurses) were extremely concerned considering that my legs were starting to swell. I started taking ibuprofen to see if it would help. At this point both thought it was a blood clot from the plane. They took me to the nearest emergency room in London. We waited there for four hours and ended up leaving because I wasn’t going to wait any longer in their emergency room. I was jet lagged and tired. I wanted to go to sleep.

We toured London while I hobbled along. My spots were getting bigger. The next day we were going to get on a train to Edinburgh so I just hoped that the ibuprofen would stop the swelling. Little did we know you have to reserve train seats and we didn’t. I stood for the hours long train ride to Edinburgh even with my bad legs. They were so stiff from standing.

Hobble off the train. Hobble to a bench. Hobble from the station to our Uber. Hobble to the next Airbnb. Find out that our flat doesn’t have an elevator. Hobble up 6 flights of stairs. Beg for cortisone because I assume this rash needs something to put on it.

I called my doctor at home in the States while in Edinburgh and tried to explain that we had done research. The nurse who answered laughed at me when I told her I was pretty sure I had Vasculitis. Vasculitis is when your autoimmune system attacks your blood vessels.

“Drink water and take it easy.” she said. Screw her.

I had an appointment scheduled for a doctor in Edinburgh to check out the spots and swelling in my legs and feet. The doctor told me that it did look like either a blood clot or Vasculitis. She had me do a urine test. It came back with blood in my urine (most likely blood from spotting but we didn’t know that). They told me to go to the emergency room.

After arriving at the wrong hospital we finally made it to the right hospital where I was admitted into the hospital to stay overnight. They did blood tests and took very good care of me. I got a blood thinner injection in case I did have a blood clot. They also gave me a ton of steroids. I had to take 16 pills a day all in one sitting. If I had a blood clot I wouldn’t be able to go on a plane home.

Thankfully, for me, the blood tests came back negative for blood clots. I had Vasculitis. After a day of steroids my swelling disappeared almost completely and my spots began to fade. My parents agreed that I would be okay to finish my vacation overseas as long as I felt okay. So I did. And I noticed I could walk again. Back in London, I could barely walk without help and now I could speed walk by myself. I was so relieved. But this was just the beginning of my journey.

Back in the states, I went to a doctor to get blood work done right away. It suggested that I had autoimmune complications so I had to go to a Rheumatologist. A week later my stomach problems came back and I suffered for about 4 days before they faded and my eye became very red and irritated again. I wasn’t sure why I was having these weird symptoms but now that I had the Vasculitis, I assumed that these were all part of my autoimmune disorder.

Lots of blood tests later and a trip to the Rheumatologist revealed that my worsening eye problem was Scleritis. In other blood tests I had positive antibodies for Lupus as well as positive antibodies for other autoimmune issues. They made me get more blood tests as well as a urine tests. As of now, I am waiting for those test results.

I took a journey to an eye doctor immediately for my eye. They told me I have to use prescribed steroid eye drops. One prescription four times a day. One two times a day. A pill twice a day as well.

This is where I am and where I’ve come from. I’ll add posts as new things happen or if anyone wants me to talk about certain things related to my autoimmune problems.

Thank you if you’ve read this far.

- Callie