Independence and Chronic Illness

Disability often requires some of our independence to be given up. Personally, my independence has waxed and waned over the years continuously. While it’s nice to have periods of time where I’m capable of being very independent, it can be incredibly hard to have to relinquish some of that independence when my condition worsens. I was watching Jessica Kellgren-Fozard’s video about her personal relationship with independence and being chronically ill, and it made me think about my relationship with independence. I highly suggest watching the video, and subscribing to her. She is a disabled lesbian, from England where she resides with her wife and adorable dog.

At times, independence for me can mean being able to do my laundry or cook a meal. It may sound so simple, but these are the things so many people take for granted. Currently, independence for me means driving myself to school, and going to my classes. I still live with my parents, so some of my independence is relinquished to them; They cook most of the time, and they pay the bills (thank god). There’s meaningful independence is everyday activities, like doing the dishes or folding the laundry, that many able-bodied people fail to recognize.

My independence can fluctuate day to day, and even hour to hour. One day I can drive myself everywhere I need to go, and the next day I can barely take out the trash. This concept of ability changing on an hourly basis is something able-bodied people tend to struggle with. In their world, you’re either completely incapacitated or completely fine. I live the vast majority of my life in the in-between stages, which can make things complicated. It can also be difficult for my parents. They believe they know how I’m feeling by looking at me, but they’re often wrong. I get a certain look in my face when I feel like I’m going to pass out or vomit, but I can feel awful without the specific look. Sometimes I’ll say I’m feeling terrible, but because I “look fine” they ask me to do something immediately like feed the dogs or unload the dishwasher. It becomes frustrating when you want to help, but also just explicitly stated you aren’t doing well in the moment. Being the obedient child I am, I force myself to do what is asked of me even when it makes me feel worse.

I want to be able to help my parents whenever they ask, but it just isn’t a realistic “want”  sometimes. Learning to relinquish some of your independence to other people can be difficult. I’m someone who likes to be in control, and likes to be as independent as possible. Being chronically ill has taught me, that there’s strength in vulnerability. Knowing when to ask for assistance is a necessary part of being disabled, but it can feel demoralizing. It is however, a choice to relinquish that independence, which makes asking for help less patronizing to me. There’s so much strength in admitting you need assistance.

We live in a society that worships independence to an unhealthy level. No person, disabled or not, can do everything by themselves 100% of the time. You’re life’s worth shouldn’t rely on whether or not you can drive a car, or wash your own hair. All levels of independence are beautiful and should be celebrated. Relinquishing some of your independence does not make you weak, but instead shows an incredible strength.

Advertisements

Weight Fluctuations Due to Chronic Illness

I wrote a post all the way back in May about my journey with weight fluctuations due to medication. At the time I was going to the gym 5-6 days a week, and eating incredibly healthy. So, what’s happened since?

I started trying to lose the weight I gained on Gabapentin back in April, and since then I’ve lost a little over 30 pounds! Honestly I can’t believe I’ve lost that much, and I never really believed I’d be able to do it. As I mentioned in my original post, I’ve watched multiple family members struggle with their weight, which was discouraging. Now that I’ve lost the majority of the weight I gained, I feel so much more like myself. After the weight gain, my body didn’t feel right and I felt uncomfortable all of the time. I don’t think we should equate beauty or self-confidence with weight, and I recognize some of these thought aren’t exactly body-positive. However, losing the weight has lifted the uncomfortable feeling that was dragging me down.

As of right now, my health is no longer in the place that I can work out as much as I was. The combination of school and declining health, doesn’t leave much time for anything else. I’m hoping once I get my IST under control, I’ll be able to work out again. I’m still eating pretty healthy, but I’m not as crazy strict as I once was. Every one in a while you’ve gotta live a little, ya know? Plus, you can only eat so many scrambled eggs and apples before you go crazy.

It will be a year in November since I stopped drinking any carbonated beverages or caffeine. While I wasn’t losing weight at the time, I do think that decision has made the whole process easier. Plus now that I’ve been doing this for a while it’s much easier. Even though I’ve loosened the reigns some I’m still continuously losing weight, and trying to live as healthy of a lifestyle as possible. Right now my main goals are to lose around 10 more pounds, and hopefully be able to workout again soon.

Chronic illness makes weight loss/gain super difficult, but not always impossible. If you are currently trying to lose or gain weight, don’t feel discouraged! It may feel incredibly slow, but the fact that you are trying your best is all that matters. If you’ve been working hard but your health gets in the way, that’s also okay. Sometimes you’ve got to take a break, or slow down in order to take care of yourself.

Do you have any experience with weight fluctuations due to chronic illness or medication?

I hope you are all doing well!

Gastro Appointment and Action Plans

I had a super busy week last week at school with quizzes, exams, and a lab for biology. I felt way less prepared for these tests than I did for my first round of tests, but luckily I actually did really well on everything. On top of all of the school stuff my health is continuing to spiral, and I’m having near syncope episodes where I become disoriented everyday, and they’ve gotten more severe.

One positive thing that happened last week is that I finally saw a new Gastroenterologist! I really liked him, which to be honest I wasn’t expecting to, since I saw two other doctors in that practice when I started to become chronically ill, and they thought I was faking it. He however, was very kind and had a few ideas on where to go next. He thinks I might have post-infection IBS, since I had some weird blood work five years ago that said I had a parasite. I thought this was a false positive since the parasite mainly lives in Africa, but apparently although possible it is incredibly uncommon for that to happen. If i did in fact have the parasite, then it may have damaged my GI tract causing the IBS.

I’ve actually never been diagnosed with IBS, even though all of my gastro symptoms fit the definition. He wants to do a few more tests before calling it IBS, since IBS really is just a nice acronym for “something in your GI tract is messed up but we don’t really know what.” I had some blood work and an x-ray, that I should be getting the results about at the end of this week. If everything looks good, we’re probably going to do an endoscopy since he thinks I might have systemic mastocytosis. I’ve done the tryptase test for MCAS, and it was negative but apparently the best way to diagnose it is by a biopsy of the small intestine, if you have gastro symptoms, or a bone marrow sample. Since I have a ton of gastro symptoms and doing an endoscopy is much less invasive than a bone marrow biopsy, we’re probably going to do that. If the regular endoscopy also fails to bring any good information, we’re considering a capsule endoscopy to make sure I don’t have any disease activity in the part of the small intestine that you can’t see during a colonoscopy and endoscopy.

If you missed my last update, I talked about how I tried corlanor for my IST and it really didn’t go well. This past weekend my doctor had me try it again, but now he only wants me to take it once in the morning every other day. I tried this on Saturday and it made me feel really crappy again, so I definitely won’t be taking corlanor anymore. The electrophysiologist also doesn’t want to see me anymore (even though I only saw him once) and is referring me to the research hospital that is attached to a med school in the city. His office has yet to send the referral, so I hope they hurry up since my heart is becoming quite an issue on a daily basis.

I’m sorry this is quite a Debby-Downer post, but it’s just reality at the moment! I am feeling positive about the new gastroenterologist and I’m hopeful that the referral for a new cardiologist will be helpful. I’ve been pushing myself so hard to make it to school, and get really good grades, so I know my blogging hasn’t been the best. Being chronically ill and being a student feels nearly impossible the majority of the time, so doing anything extra has been out of the question, especially the past two weeks. I’m hoping to post more regularly soon!

I hope you all are doing well!

Gender and Chronic Illness

Most abled people assume that if you get sick there will be a doctor there full of empathy and ready to save the day – this however is not the narrative of many people who have chronic illnesses.

While I personally have never been straight up told I’m faking it, it’s been implied and stated multiple times that I was being dramatic or “just had anxiety.” I feel like it’s important to note that every time this has happened, it was coming from a man. I came to the realization a long time ago that a lot of medical professionals see me as a teenage girl who’s over dramatic and just wants to get a few days off school. This profiling happens before I open my mouth and once that decision has been made in their mind it is nearly impossible to change it.

Many people who end of being diagnosed with endometriosis or ovarian cysts are told that it’s “just their period” and that they need to learn how to deal with cramps.Women and feminine presenting people are disproportionally targeted when it comes to doctors disbelief of their symptoms. Men and masculine presenting people on the other hand often try to “tough it out” and don’t go to the doctor until long after it’s necessary due to being afraid of not “taking it like a man” ; or they do go to the doctor and the doctor essentially tells them to “man up.” These gender stereotypes are incredibly harmful, especially within the medical world.

Back in February of this year I had an electrophysiology study, and the experience was less than pleasant. After the study I had a reaction to the medication they gave me to speed up my heart rate, and my whole body began to tremor. A rapid response team was called and all of the nurses were visibly concerned, and knew something was wrong. The doctor who came in however, was super nonchalant about everything and left the room while I was still having the tremors.

Later the next morning when my doctor (at the time) came to see me he said he thought I had anxiety and that’s why the whole incident occurred. Obviously that was not the case, and he just didn’t want to figure out what is actually wrong with me. There are two conclusions I’ve drawn from this situation: 1) because I’m a teenage girl he thought I was being dramatic, 2) it was going to take time and testing to figure out what’s wrong with my heart (plus I’m considered a “complicated care”) so my situation would not be easy money for him.

This is just one of many events where men downplayed my symptoms / disability and reduced me to “just an anxious teenage girl.” Not all chronic illnesses are created equally and not all experiences with chronic illness are the same. Gender and Sex can be a huge factor is getting a diagnosis, even when your illness has nothing to do with either of those. Have you ever had a bad medical experience due to your gender? Did gender or sex affect your diagnosis process?

 

The Language of Disability

Not that long ago I didn’t consider myself disabled. Society had taught me disabled people were in wheelchairs, had some level of impaired mobility, or had moderate to severe cognitive disabilities. Sure chronic illness had completely taken over my life, but in my eyes I wasn’t disabled enough.

Fast forward to maybe nine months ago, I realized I was in fact disabled by my chronic illnesses and took on the label with pride. For me disabled is both a description of how chronic illness affects my life and a political label. I don’t have a problem with being referred to as disabled, because it’s true.

A lot of people however don’t seem to like the word “disabled.” When I was in high school I applied to become a “Best Buddy” which is a program where you befriend someone in the special education program. Fortunately or unfortunately for me (depending on how you look at it) they didn’t have enough special ed kids for all of the volunteers to have a buddy, so I never got one.

I did go to a training class after school one day, and something from it has stuck with me. They talked about how you shouldn’t ever say someone is disabled, instead say “a person with a disability, differently abled, or handi-capable.” The funny thing about the language of disability is I only see parents/caretakers asking people not to say disabled, never actual disabled people. I’m sure there are disabled people out there who don’t like the term, but I personally haven’t run across any. Many people take on the label with pride and try to advocate for themselves and others with disabilities.

I personally have a problem with the term “differently abled.” Disabled people aren’t differently abled, they are disabled. There are things we can’t do, point blank, end of story. For me some days I can do something and the next day I can’t, but there are also things that I’m never abled to do no matter the circumstances. “A person with a disability” isn’t offensive, I just find it unnecessary. The argument for the other side is that you should put the person before the disability. I feel you don’t have to take that literally. As long as someone is being respectful and isn’t  using a demonizing or belittling tone, then there isn’t anything wrong with saying “disabled people” or a “disabled person.”

Of course you should treat someone like a human being, and not reduce them to their diagnosis. However I don’t fid it necessary to say “person with a disability” every time you speak about disabilities. What are your thoughts? Do you use the term disabled to describe yourself?

The Hair Perv: Chronically Misunderstood

In the fall of 2016 my PCP thought I might have pseudotumor cerebri. One of my mom’s coworkers daughters had this and went to see a neuro-ophthalmologist, so we decided I should see him and figure out if I actually had pseudotumor cerebri or not.

This was probably the weirdest doctors appointment I have ever had. To start it off we were shuffled between five different rooms to do a bunch of eye tests. No one explained anything or said why I was doing the tests. When we finally saw the doctor he looked at my eyes and said maybe five sentences to me. He told me I needed an MRI and he would give me a prescription for torodol. After four years (at the time) of chronic illness I was kind of offended that he thought  had never tried torodol. It’s pretty much the first pain med doctors try when you first become sick.

After I saw him there was one more eye test I had to do. An older man was running the machine and was getting everything set up. To be honest I don’t remember 100% what the test was for since the day was such a whirl-wind. The man had to put some sort of salt on my scalp and then put electrodes over the areas of salt. I had rather long hair at the time, and my hair is pretty thick. As he put the electrodes on my scalp he ran his finger through my hair and said, “I’m enjoying this way too much.”

“I’m enjoying this way too much”

What the hell is that supposed to mean? I was sixteen and that comment was incredibly inappropriate, plus my mom was standing right there. I have no idea why he thought that was an okay thing to think, let alone say. I was there to find answers to my chronic illnesses, not be hit on by some pervy old dude.

We did the MRI and found out I do not have a pseudotumor, so needless to say we’ve never been back. In those 4 four years pervious to that appointment no one would order an MRI for me, so at least I got that out of this mess.

Oh the things we go through to find answers to our chronic illnesses!

Why Do Doctor’s Offices Suck So Much?

This is purely a rant on why I hate the receptionists in doctors offices.

 

Today I had an appointment with a sleep neurologist. My PCP referred me to him, and since I’ve had so much trouble with sleep and fatigue, I thought seeing him would be worth my time. His office is in the city so it’s a 30-45 minute drive depending on the traffic, and we had an 8:30 appointment, so I had to be up way earlier than I normally am.

Fora normal person this wouldn’t be that big of a deal. My body however, hates being up early. Whenever I get up before my body is ready I feel nauseous and get a headache. It’s also inevitable that in the afternoon I’ll crash, hard. Since this appointment was important though, I was willing to risk it.

After driving 45 minutes down there, we arrive to find out they cancelled our appointment. Apparently they had been calling the wrong phone number to confirm the appointment. Everyone makes mistakes, so this wouldn’t be a huge deal, but they had already called my mom multiple times on the correct number, so they did at one point have the right number. We also confirmed the appointment on their online patient portal.

The receptionist also tells us that we’re out of network and they don’t take our insurance. They should have never agreed to see me if they’re out of network. She tells us we could see him, if we paid $250 out of pocket. No ones time, in my opinion, is worth that much for one doctors visit. Since they had taken it upon themselves to cancel the appointment though, we wouldn’t even get to see him today.

Now that’s all bad, but they apologized right? Wrong. Both receptionists said it wasn’t there fault and it must have been someone else. We left because there is no use in arguing with incompetent people. An apology would have made this situation much better, but even when my mom called to try and talk to someone else, they didn’t apologize nor did they care. They even said that they had never heard of online conformation. To which my mom replied, “well then it sounds like you have another problem don’t you?” which made me crack up. They also repeated back her phone number wrong to her three times, which means after going to the office and talking to the receptionists there, they didn’t even change the number in the computer system.

Unfortunately this isn’t the first time this has happened. It’s at least the third time we’ve gone to a doctors office only to find out they canceled our appointment/didn’t take our insurance/never made the appointment in the first place. I understand that it’s a boring job, and that people make mistakes, but this was a long series of mistakes (probably made my multiple people) and they way the handled it was incredibly unprofessional. “I don’t care we screwed up, sucks for you” was the general attitude.

The office manager did called call my mom, and was apologetic. He’s trying to get us in on Monday and is giving us a discount. More than wasting my time, waking up early, wasting my moms time, and making her take half a day off work to take me, not having answers is the worst part. I’m happy this situation seems like it’s going to have a positive ending, but they don’t all turn out so well in the end.

Ugh. What are your experiences with difficult doctors office?

Have you ever showed up to a doctors office only to find out you don’t have an appointment?