Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Kali's Story.'


Palm trees

Hi everyone! My name is Kali Smith, I’m 22 and I live in a very small town in Ohio. I don’t have any kids and I’m single but I’m okay with it. Well really the closest thing I have to a child is my blog called This Spoonie Speaks. I also have two cats and two dogs that keep my life interesting with their weird antics.

I have ten chronic illnesses that impact my life. Though some are definitely worse than others.

  • Meniere’s Disease: A rare inner ear disorder that causes severe vertigo. It can also cause me to spontaneously fall over, these are called drop attacks.

  • Gastroparesis: This literally translates to stomach paralysis. My stomach is almost completely paralyzed and doesn’t function well because of this. I have a difficult time eating and digesting food to get proper nutrition. I generally always feel like I’ve already eaten, so lack of hunger makes it difficult to stay nourished as well. Gastroparesis also causes me to throw up/dry heave frequently.

  • Chronic Migraines: I used to have 18 migraine days a month and they generally ruled my life. Though now thanks to medication I only have 4-8 headache days a month.

  • Fibromyalgia: A chronic widespread pain disorder, I have pain everywhere unfortunately. But what parts of my body hurt on a day-to-day basis varies, weather is also a big contributing factor.

  • Asthma: My Asthma triggers vary from season to season, but the most common one are strong scents. Things like candles, car exhaust and perfume are my triggers that are always present.

  • Psoriasis: I have plaque psoriasis, the most common type. My skin cells turnover at too fast of a rate leading to inflammation, scaly patches and pain.

  • Ehlers-Danlos Syndrome Hypermobility Type: EDS is a rare genetic connective tissue disorder. My collagen doesn’t work correctly to keep me held together, I often dislocate and sublux any joint in my body.

  • Postural Orthostatic Tachycardia Syndrome: POTS is a condition where my heart rate goes up drastically when I change positions, such as when I go from laying to standing.

  • Chronic Fatigue Syndrome: CFS goes hand and hand with most of my illness. I’m tired regardless of how much I sleep.

  • Raynauds: It makes blood vessels narrow when I’m cold or stressed cutting off blood flow. Mine isn’t severe enough to cause any damage, but it’s enough to be bothersome.

  • Insomnia

  • Arthritis: I just got diagnosed with Arthritis last week. Though we aren’t sure of which type of Arthritis it is yet, it’s most likely Psoriatic Arthritis.

Before I was diagnosed I’d spend a lot more time with my friends. When I was in high school before I got diagnosed, I was even able to participate in clubs.

I can’t work right now, but I am able to do some online college. I hope that one day I might get a bit better to be able to put the knowledge to use. I’m taking online classes to become a pharmacy tech.

Kali's pets

I’m a myriad of chronic illnesses and it’s difficult to pinpoint exactly when I really started to get sick. I’ve had EDS, Meniere’s Disease, Asthma, Chronic Migraines and Gastroparesis all my life. Though for a very long time we didn’t even know that the things wrong with me even had names at all. I spent most of my life living as a weird constellation of symptoms that no one could figure out.

We thought the pain and dislocations from my EDS were normal, that my dizziness was nothing, my shortness of breathing and wheezing were just random and they would resolve, my migraines would resolve on their own and my Gastroparesis symptoms were just the way my digestive system worked.

We think that my POTS flared up because of a very severe bout of Mono that I contracted during high school; it was so bad I ended up needing to go to the hospital. I had a very uncontrolled and high heart rate for a really long time and my nurses were afraid I would go into cardiac arrest; they kept a crash cart outside my room. After that it became easy for me to become tachycardic and pass out.

I also have very severe plaque Psoriasis, which has been a more recent diagnosis because of my severe anxiety and trauma that I’ve gone through. My Fibromyalgia developed from breaking my kneecaps when I was younger. It then worsened after I was in a bad car accident a few years ago.

The “easy” diagnoses were my Migraines, Asthma, POTS, CFS and Fibromyalgia. My more complex diagnoses were the Psoriasis, EDS, Gastroparesis and Meniere’s.

My Psoriasis took a lot of trial and error to diagnose but thankfully it wasn’t too awful. My Meniere’s Disease took a long time to diagnose because it took a very long time for anyone to believe that my dizziness was a problem. The doctors thought that I was complaining about dizziness to get attention.

My Gastroparesis was a particularly difficult to diagnose. I’ve had stomach issues all my life but we could never figure out what it was until a few years ago. My GI Doctor connected the dots between my excessive vomiting and my EDS. Though I’ve jumped through hoops to get where I am, I’ve tried many medications, relied on fluid and vitamin infusions, had my Gallbladder removed and now have a feeding tube.

My EDS was the most difficult diagnosis I had to bother my doctors quite often to listen to me that there was something wrong. Though in the end it was my mom’s nurse who gave me a tentative diagnosis of EDS. I eventually ended up at a Geneticist’s office and got my official diagnosis.

I looked to the internet for help understanding my diagnoses, especially my Meniere’s Disease. It’s very weird for a 17 year old to be diagnosed with Meniere’s, usually it’s more common in older people. I also looked into Gastropresis and EDS on the internet. It was confusing and a bit discouraging when I didn’t find a lot of things that I could understand and relate to.

I have Fibromyalgia flares because of weather changes, usually rain or snow being the two most severe triggers. I have Meniere’s flares when it snows and I watch it snow or if I’m trying to drive in the snow. I have yet to figure out what triggers my Gastroparesis it just gets really bad where I can’t eat at all, or it gets a little better and I can eat a little more food than I normally would.

My pain varies depending on what part of me is hurting at the time and if they’re pinching a nerve. When my ribs dislocate it often feels incredibly painful, like someone is trying to rip open my rib cage. I currently have a dislocated rib that is also pinching a nerve and it’s causing burning pain that’s wrapped around to the front of my rib cage.

My migraines often feel like I’m getting an icepick shoved into my eye or getting hit in the side of the head with a baseball bat. Fibromyalgia is equivalent to feeling like I got scrubbed down with sandpaper and then got all the bones in my body broken.

Usually if I take my medicines in a timely manner I don’t flare for a particularly long time. Though I do have some migraines that I try to treat with my oral migraine medications that cling. I may have them for a couple days or until I use my injectable medications to abort them. Though if I get stuck in a severe Gastroparesis flare it could require a trip to the hospital for IV fluids and medicine.

Coping with flares can be a bit tricky but it depends on what kind of flare that I’m in. Migraines can usually be taken care of easily with oral or injectable medicines. Fibromyalgia flares are a bit more intensive, I take pain medicine then soak in a Epsom salt bath. Arthritis flares are one of the worst kinds of flares, they hurt so much more than a Fibro flare that I need steroid injections to help the flare stop. Gastroparesis flares can be a bit tricky too because I’m unable to eat or do anything because I’m too nauseous to move. Medication barely helps if I take it orally though I do have medicines that I can put through my feeding tube to help me.

Kali

My migraine triggers are usually light and sound, though sometimes strong smells can also give me a migraine. We’re still struggling to figure out what my Gastroparesis triggers are, though my nausea can be triggered by strong food smells. My Meniere’s triggers are usually allergies, illness such as a cold and driving in the dark or snow. My POTS likes to do whatever it wants, while I do try to keep my salt intake at a reasonable level I still end up sodium deficient. I’m also still learning about my Arthritis so I’m not really sure what triggers it though I hope to learn when to get care and what a more mild flare is.

I take a variety of medicines, though most of them are migraine preventatives or to help with my insomnia. I also have my formula that I rely on for my tube feeds. Then I also rely on infusions to provide me with Potassium and other vitamins because I have Potassium and Magnesium malabsorption, which makes it hard for me to absorb those vitamins from any food I eat and my feeding tube formula. I’ve tried some vitamins like Zinc, Coconut oil (before I found out I was allergic to it), Vitamin C, D, E and B12. I never really noticed any improvements when I took them though That’s probably because of my Gastroparesis.

  • Amatriptyline

  • Gabapentin

  • Norco

  • Cyclobenzaprine

  • Propranolol

  • Valium

  • Linzess

  • Zofran

  • Promethazine

  • Sumatriptan

  • Azathiprine

  • Humira

  • Butalbital

  • Tigan

  • Benadryl

  • Zyrtec

  • Melatonin

My biggest tip/advice would be to be persistent, be like a bulldog with a bone. Some doctors think that being persistent is a bad thing, but if I hadn’t been persistent with my treatment plan I would still be really sick right now.

My chronic illnesses have impacted my life for the good and bad. The good being, I have a lot of amazing friends because of the chronic illness community. It’s also made me learn to just value the good days, and life in so much more, because you don’t know when your next hospital admission is going to be.

My illnesses have stopped me from functioning “normally”, I speand more time asleep than I do awake I think. I’m not entirely sure I’ll ever be able to be a nurse because my body can’t really take that kind of stress anymore to finish nursing school. I can’t have a job because my illnesses and doctors appointments take up most of my time.

I actually don’t have any healthy friends because I’m so sick. They all just kind of left me behind and moved on with their lives. Though I suppose since they all left without so much as a backwards glance they weren’t really very good friends to begin with. But being sick has given me new friends, that have similar illnesses to my own and they’ve stuck with me throughout this crazy year I’ve had.

I stay positive by writing my blog and trying to make sure I talk to my friends everyday. Both of those things help me with the stress I have to go through with my illnesses. I also try to spread awareness everywhere I go when I’m able to leave the house. A lot of people comment either on my feeding tube, port or my Silver Ring Splints so it’s nice to educate people.

In the future I hope that one day I’ll be able to function better and have at least a part time job. I also hope one day that I’ll be well enough to travel internationally, I want to meet my friends from different countries and travel to Japan.

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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