The Guilt of Chronic Illness

We shouldn’t feel guilt of things that are out of our control, but I don’t know anyone who’s dealt with a chronic illness that doesn’t ever feel guilty.

I mostly feel guilty that my parents spend so much time taking me to doctor, especially my mom, and that they have spent so much money on medical treatments. They never try to purposefully make me feel bad, but I know this is hard for them too. They didn’t ask for this anymore than I did.

For almost all of my doctors appointments my mom’s been there. It’s not that my Dad doesn’t care, his work just isn’t nearly as flexible. She’s spent countless hours in doctor’s offices, ER’s, and hospital rooms. She’s advocated endlessly for me, even when she was tired or not feeling well herself. I am so grateful for her, but I also feel terrible that she’s sacrificed so much for me.

The money is a different issue. We’ve always been very fortunate to be middle class. During the five years I’ve been chronically ill my dad was laid off and then unemployed for a little over a year. Luckily he got a pretty good severance deal from his previous employer but it was still really hard on our family financially and emotionally. My illness did not stop just because he lost his job, and paying tens of thousands of dollars in medical bills took a blow to our finances. While we’ve also been very fortunate to have always had medial insurance, the cost of doctors office visits, medications,  and diagnostic testing really adds up. Knowing that even if I have a job that pays really well in the future, I will never be able to repay them is a hard pill to swallow. I see that every time they check the mail there’s another medical bill that’s usually for me, and it makes me feel incredibly guilty.

Another thing that makes me feel guilty is seeing my parents get upset when I’m not feeling well. Sometimes I try lying and say I’m feeling okay, but they can usually see right through me; I’m not a very good liar. At times I forget that this is really hard for them emotionally as well. They are nearly as frustrated as me that I don’t have a diagnosis or an accurate treatment plan. Their heart breaks along with mine when we hear another doctor tell us they don’t know what’s going on or another medication doesn’t work. I wish I could take all of their pain away, and knowing I can’t is the  hardest part.

I know that feeling guilty won’t fix the situation or make it any better, but seeing your issues affecting someone else is difficult. I hope that if you feel guilty about being chronically ill that you can see that it isn’t your fault. Chronic illness is a beast that no one causes.

– Alyssa

 

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Self-Advocating with Chronic Illness

Now I have to admit, this hasn’t always been my strong suit.

I would try to build the courage to speak up and stand firm against doctors when they questioned my symptoms or wanted to start a treatment plan I didn’t agree with but when the time came to self-advocate I found it rather difficult.

I’m definitely more comfortable disagreeing or refuting doctors now than I was at the beginning of my journey, then again I’ve had five years to practice. Doctors are people too, even though society puts them on a pedestal they don’t always get it right. As a patient there are times where it’s your job to say no and put your foot down. It’s so easy to blindly follow a Doctors orders, but that can end poorly quick. Doing your research and getting to know your own body is crucial when chronically ill.

Self-advocating is probably one of the most important things a chronically ill patient has to do. Sometimes you have to push and push to get the adequate medical care you deserve. Other times you’re fighting with the insurance company to try and get them to cover a medication that you desperately need. It’s never ending and exhausting, but so so necessary. Unfortunately with some chronic illnesses many Doctors may not be aware of all the treatment options available or even aware of what the illness entails at all. While it’s always best to see a doctor who’s treated someone with your specific illness before, that isn’t always an option. In those cases you have to be able to self-advocate and teach the health care professionals about what you need.

I have a lot of symptoms that are “weird” or don’t match the other things I deal with. I’ve also dealt with some side effects of medication that are rather uncommon, and instead of listening Doctors and other health care professionals can make excuses or just straight up not believe you. One problem a lot of people with chronic pain run into when visiting the ER is the staff not believing you’re at a certain pain level because you’re not crying or don’t “look like you’re in that much pain.” I personally don’t respond to pain by crying, and unless you know me really well you probably can’t tell by my face how I’m feeling. There is no wrong reaction to pain, but sometimes certain reactions make it more difficult to receive the care you need.

When you’re in the ER or admitted to the hospital it’s always best to have someone there who can help advocate for you. There may be times where you’re too incapacitated to self-advocate and it’s important to have a friend or family member who knows your situation and can help relay information to the doctors and nurses. I know when I’m in extreme pain, brain fog sets in and it makes it a lot harder to explain things and recall everything that’s happened leading up to the ER visit, hospital admission, doctor’s appointment etc. Other times I just don’t have the energy to explain everything or go back and forth with the doctors and nurses.

A big part of self-advocating for your health comes down to confidence. Confidence speaking to strangers and authority figures, confidence talking about your body and uncomfortable things that may come with that, and confidence being honest about how you’re really feeling instead of giving everyone the rose-colored glasses version. For me (and I think most people) confidence will always be a journey. Some days I feel ready to tackle the world and I don’t care what anyone else thinks, and other days I feel insecure. Self-advocating for my health has helped me gain confidence when speaking to authority figures and talking about uncomfortable subjects.

Do you find self-advocating difficult? How do you self-advocate? Let me know!

Lots of Love,

Alyssa

All the Appointments!

Since I last did a health update a lot of things have happened.

First I went to an allergist/immunologist who I really liked and she ran the Tryptase test for MCAD. Unfortunately that came back fine, and so did all the other tests she ran. I’m glad nothings wrong, but also something is clearly very wrong and I just want to figure this out. She started me on Singulair, ranitidine, and Allegra for the all over itching I’m having. They’ve kind of worked, but the days I still have the itching it’s extreme and I feel like I want to peel back a layer of my skin.

I also went back to see my electrophysiologist for a follow-up from my EP study. It wasn’t surprising to me that this visit was kind of a waste, but it was still annoying. He upped my metoprolol dose. Due to some unexplained episodes of waking up gasping, my heart skipping a beat, then beating really hard and pain shooting through my body I’m wearing a monitor for a week. I’ve done the 24 hour Holter monitor before but this is the Cardiokey. Hopefully it gives us some answers. He doesn’t think they are anything to worry about, but he also doesn’t do much diagnostic testing and in my opinion generally does not care. Unfortunately I have to see him in May to get the results from the monitor.

My mom works as a case manager in a hospital and one of her friends is a Cardiologist. She explained my whole cardio story to her and she thinks I should get a second opinion and that my electrophysiologist isn’t doing enough. So now we’re looking for one who will take seventeen year olds.

Because I definitely needed more specialists in my life, I saw a rheumatologist for the first time. I’ve been having joint pain and swelling that didn’t go away after I weaned off topiramate, so we went to see what they could do and what suggestions they had. My mom had to call 12 different rheumatologist to find one who would take me. Most of them didn’t see anyone under 18, so she called pediatric places but they wouldn’t see new patients over 16, being 17 I was screwed. Fortunately she explained my situation to one office and the secretary asked the doctor if she would make an exception and see someone under eighteen and she agreed, God bless nice people. This doctor was so kind and understanding.  She ran something like 21 blood tests to make sure I didn’t have any signs of rheumatology related diseases like Lupus or RA. I also got x-rays of my hands and feet, and we should get results from all of this within 1-2 weeks.

She thinks I may have fibromyalgia on top of whatever mystery illness I’m fighting, but doesn’t want to diagnose me with it just yet since it’s something that is way over diagnosed and once you get that diagnosis most doctors won’t look past it. I’m not surprised she thinks I could have fibromyalgia, but I am really happy she wants to do more and look into other things.

In two weeks I have a follow up with the allergist, then in eight weeks I have a follow up with the rheumatologist, and in seven weeks is the follow up with the electrophysiologist. Ahh so many! Some of these would be sooner but our insurance is changing as of May 1st so for the first 15 days while things are switching over it’s best not to have any appointments. I also have a dentist appointment to fix some broken fillings in May. It’s gonna be busy, but I’m glad we’re getting the diagnosis process going again.

If you read this whole thing, thank you but also why? Haha I’m kidding, but seriously thank you for taking the time to read my posts. Let me know how you’re doing!

Lots of Love

and appointments,

Alyssa

Daith Piercing for Migraines?

Whether you have migraines or not you may have seen posts that circulate the internet about daith piercings being cures for migraines. The daith is the inner most piece of cartilage on your ear and it’s supposed to act as an acupressure point.

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As a skeptical person I’m not really buying this as a migraine cure. I get the idea, but I don’t really think it will work. With that being said, my mom has had three co-workers get this done and all of them have had less migraines. I could try to come up for explanations for why they got better after getting the piercing, but I’m not going to. It really worked for them and so I’m going to try it… with no expectations of course.

The worst thing that could happen is that it doesn’t work. This isn’t invasive and I really like the look of them so I would probably keep the piercing either way. The place her co-workers went specializes in this piercing for migraines and is reasonably priced, so I’m going to go there as well. I’m not a huge fan of a lot piercings but I think one or two on the ear (that aren’t the typical lobe) can look cool. Some people look really good with other piercings like their nose or septum, I just don’t think I would be one of this people.  I’ve wanted my helix pierced for around two years now but I’ve been vetoed by my parents.

This place doesn’t do appointments, only walk-ins but I’m planning on going on Saturday. You have to get one side done, wait a month for it to heal some, and then get the other side done if it doesn’t completely relieve your migraines or you get them on both sides. I plan to make an update post once I get it and then again after I’ve had them both for a few months.

Have you ever tried any “internet cures” for your chronic illness? Did they work?

Lots of Love,

Alyssa

 

In the Beginning… of Chronic Illness

When I first became chronically ill (long before I released this was going to be long term thing) there were cards, flowers, and edible arrangements. One of the biggest revelations I’ve had since getting sick is that people get tired of caring and sympathy runs dry.

Friends leave and family members stop asking how your doing. Teachers stop following your so called “accommodations” and respond with anger instead of understanding when you miss yet another day of school. No matter how hard you try to not talk about it, people won’t want to hear about your illness,  years or even months down the road. The one person you can’t stop caring is you, you don’t get that luxury.

The response to others acute illness always amazes me. In the past few weeks my older brother has had some random severe abdominal pain and my parents freaked out. They both tried to take him to the ER, although he refused on multiple occasions, and a few days ago both my mom and my sister took him. They all thought he had a kidney stone, but diagnostic testing showed nothing. I’m sympathetic to the pain, I offer to help and gave suggestions to ease the pain in the least invasive way I knew how. It does hurt a little bit to see everyone jump and scramble when he has pain for a few hours, but when I’m in constant daily pain it’s no big deal. Acute pain is different, and I know that. When you don’t know whats going on it’s scary… oh wait I know a thing or two about that. I start to forget that this isn’t normal.

I don’t need nor do I want a ton of sympathy or people swooning over me. Would a little more recognition of my pain be nice? Yes of course, but I have a very supportive family and I know their tired of all of this too. They didn’t sign up for doctors appointments, hospital stays, or procedures anymore than I did. I try my best not to complain or talk about it all the time, but it’s consumed my life. Since I’ve left school my whole life revolves around being sick, which isn’t very healthy and I’m trying my best to make some changes, but their aren’t a lot of great alternatives.

When pain meds don’t work, I can’t sleep well, and I don’t leave you house much because of the pain and fatigue, complaining can be the only outlet I have… and I hate that about myself. I was never a complainer before chronic illness and for the past five years of this I really haven’t been at all. These past five months or so however have been really hard emotionally and that definitely plays a role in it. Complainers are annoying, not fun to be around, and I don’t want to be one. Luckily or unluckily for her I guess, I only really complain to my mom so at least not everyone in my life thinks I’m a huge complainer. She probably doesn’t either, but she’s nice to listen to all of it. I hope this is one of those situations where I think I’m complaining a lot but in all actuality I really don’t ; I’m not so sure that’s true though.

We all have things we need to work on I guess.

Lots of Love,

Alyssa

17 Going on 67

I haven’t been feeling great for the past two weeks or so.

I don’t think I’m in full flare mode yet, but my body just feels bad. I’m not having migraines, but I am having daily headaches and gastro issues. My tachycardia has been affecting me more than usual and making me really tired. I just feel old.

My joints hurt, and everything is exhausting. Weird things keep happening that aren’t a big deal, I just don’t normally experience them. My muscles have been twitching, my joint crack ridiculously loud every time I move, and a few times in the past week I’ve started shaking randomly. These things probably won’t last long, because my body is an asshole who likes to mess with me, but they’re annoying none the less. It’s been hard to explain, but something feels off. I’m not in a ton of pain, but I feel terrible and that’s not really something you can fix.

I went to my first appointment at a new counselor since the last one kept canceling on us. It was an “intake” appointment and she just asked me a bunch of questions. I feel like all I’m doing is complaining, but to be honest I didn’t really like her. She asked me a few questions in the beginning and my brain went blank. I couldn’t think, my heart starting racing even faster than normal, my whole body flushed, and I felt lightheaded. I was embarrassed and said, “I’m sorry my brains a little foggy today,” and she just gave me a look like I was crazy and said “oooooh kayyyy.” It felt really judgmental even if she didn’t mean it that way. She also said somethings that rubbed me the wrong way and tried to give me medical advice, which is so very annoying. I’m still going to try to have one real appointment with her and give her a chance, because there isn’t anyone in my area who wants to see a seventeen year old with chronic health issues.

I’m really hoping they’ll find something in my electrophysiology study next week, because this fatigue is awful. I’m normally pretty fatigued, but this a whole other ball game. I am grateful that I’ve only had a few episodes of extreme pain, but I’m fearful for the weeks to come. This time of year is normally really bad for me, so it’s been kind of weird that I’ve had less pain than normal. I’m trying my best to stay positive, although this post wasn’t very positive was it? Sometimes we all just need to rant.  I have a hard time finding a balance between my realist personality, inner cynic, and the positive person I know I should be trying to be.

How are you doing? Let me know what’s knew in your life or what’s been going on!

Lots of Love,

Alyssa

I Don’t Know

“I don’t know” can be devastating words to hear or they can be refreshing when you have chronic illnesses.

When you don’t have a diagnosis or a good treatment plan, hearing “I don’t know” over and over again is exhausting and disheartening. If specialist after specialist doesn’t know, then who does? You start to wonder if you’ll ever find answers, or if your health problems will forever stay a mystery.

On the flip side, being lead on my cocky doctors who tell you they can fix you, but actually don’t know whats going on can be just as exhausting. In my own journey, time after time empty promises kept being made, but I wasn’t getting better; in fact I often got worse from side effects of the medications. I do think some of the doctors I’ve seen truly believed they could help me, they just didn’t know what they were getting themselves into.

I’ve only had one doctor honestly tell me they didn’t know. He was a gastroenterologist who is incredibly intelligent and had diagnosed me with abdominal migraines 2 years prior to this visit (this visit was last fall, September maybe?). He was very honest and said he was going to have to research and read a lot because he didn’t know what to do and he didn’t think it was abdominal migraines. He specializes in abdominal migraines, so he knows what he’s talking about as far as that goes. Although it’s hard to hear that someone as smart as him was stumped by my situation, I appreciated his honesty and found it refreshing. I have so much respect for him, and even more now that he was able to admit that he wasn’t sure what is going on with me.

I still don’t have a diagnosis and March marks officially five years of searching for one. It’s frustrating, but we haven’t given up quite yet. I have my electrophysiology study scheduled for the 2nd, and I’m supposed to be starting botox this month. I’m also starting conseling this week (after a mess of appointment cancelations on their part, but thats a whole other post.) We’re looking into seeing another endocrinologist, so hopefully all of this will lead us somewhere positive.

What do you do when doctors and specialists don’t know what to do? I don’t have any great answers for that to be honest; since this is all about honesty. The one thing I do know is, don’t give up. Go to more doctors, try more medications, look into more diseases/syndromes that you could possibly have. Test and re-test for things. Ask questions and demand answers. Self-advocay is a must when you’re chronically ill and it isn’t always going to be an easy thing. You’re probably going to disagree with a doctor at some point, and that’s okay. Choose what’s best for you and your body.

I personally would rather hear “I don’t know,”and try to look for more options than have someone lead me along when they really can’t help me. What are your thoughts? Would you rather be told the truth or have them try treating you when they aren’t sure what they’re doing?

Lots of Love,

Alyssa