Chronic Illness: Oh, I hope you feel better soon.

We live in a world where being polite is reflective of manners. Someone sneezes, we say “God bless you,” whether we’re Christian or Atheist. It’s not an actual blessing, as Pope Gregory the Great uttered it during bubonic plague epidemic of the sixth century. [https://people.howstuffworks.com/sneezing.htm] (Just figured I’d throw some trivia in there for you. In case you’re ever on Jeopardy.) It’s just considered good manners and nobody thinks much of it. When you are sick, people often tell you to “Get well soon,” or “I hope you feel better.” Sometimes people mean it sincerely, and sometimes it’s just something people say because they are trying to be polite. Regardless, we don’t usually take offense to it and we say “Thanks,” and go on about our day. However, there are some of us who, while we may not take offense to it, are sick of being told “I hope you get better soon.” It may sound strange to you that someone would get upset over a seemingly benign offering to get better, but when you live with chronic illness or pain and aren’t going to get better, it can become aggravating to hear. Even more-so, is when you’ve addressed this, and your friends or family refuse to accept that “getting better” is not part of your story.

exploding-head

It is difficult for everyone to accept they have a chronic condition, especially at first. Chronic means that there is no cure, and that you will have to live with this condition until you die. It can be very daunting even for the most optimistic of individuals, but you eventually learn to live in this “new normal,” and that doesn’t mean you’ve given up hope, it just means there is a level of acceptance that healthy people are unaccustomed to. What I mean by that is, healthy individuals typically only have dealt with things like a cold or sprained ankle, or maybe a broken wrist where they had a cast for awhile or broken leg where they hopped around with crutches. Some, maybe deal with a chronic illness that is controlled by medicine and if they are careful, that is all it takes to keep them healthy. While still chronic, it is maintained so they feel good a lot of the time. Those like me, with chronic illness that is not controlled by medicine and only manages some symptoms, not necessarily all the time, live in another world.

Here are five examples of why telling someone like me, who has chronic illness, “Hope you feel better soon,” (and other things) can be irritating, and in some instances, makes us feel like our head is about to explode and what you might offer instead:

SheldonBoom

  • It’s been five years since I “got sick.” Either I have the longest flu in history or I’m not getting better.
  • We are only co-workers, but I’ve told you I’m chronically ill and you still pat me on the back and tell me “I hope you get better soon.” It’s okay if you don’t know what to say. I’d prefer “Is there anything I can do,” than anything else.
  • I’ve told you before I have a chronic illness. Somedays are worse than others, it’s just the cards I’ve been dealt. You don’t have to say anything at all. You could offer me a hug. Sometimes that can make all the difference.
  • Don’t lay hands on me and start praying over me. Don’t tell me Jesus has a reason and I’ll understand his purpose. Not everyone is religious and if Jesus has a reason, I wish he would have chosen to show it a different way.
  • I know you mean well when you say, “I hope you get better soon,” but it often leads to “How are you feeling today?” The latter is almost worse than the first because, I feel like I’m disappointing you when I say I’m no different than I am every day. And if I am having a good day, you think all the rest of my days should be good and it just doesn’t work that way. Ask me instead: “Is this a good day or a bad day.” If it’s good, be happy with me. If it’s bad, just let me know you are there.
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Hellloooo!

Hello again, blogging-world. Miss me? I missed you. But I needed to take some time off for self-care. It’s been frustrating, to say the least. I think we can all agree, that when you suffer with more than one chronic illness, things can get a little hairy from time to time. Your body lets you know, in no uncertain terms, that you’re it’s bitch. (I really tried to phrase that more eloquently, but let’s face it, there’s nothing eloquent about this situation.)

If you’ve been keeping up with my blog, you know that I’m quite overwhelmed with several different things going on. If this is your first time here, I battle R.A., fibromyalgia, ankylosing spondylitis, IBS-d (but I think that is shifting to a mixed form), sacroiliac joint dysfunction, seizures, degenerative disc disease, psoriatic arthritis and migraine. Everyday is different. Somedays I actually feel what passes for good, in my world. In a non-chronically-ill-person, that would translate to something less than good. Crappy, in fact. I deal with it all as it comes, trying to make the best of the days I feel good and where I am not suffocating from pain or debilitated by symptoms.

These last two weeks have been an extended affair of miserable, but I am feeling as though I am finally bridging over the worst part and may be coming out the other side. When I am feeling my worst, I practice a lot of self-care, which for me includes: hot baths with Epsom salt, listening to mixes on Spotify, devouring Twitter and Instagram, taking a lot of pictures of my adorable cat and dog and spending a lot of cuddle time with the Mister. Unfortunately, the Mister was gone this weekend for his one-a-month Air Force gig, so I had to cuddle with the cat and dog, but we made up for it when he got home last night and plan to do more today, after his work.

In my blog, I focus a lot on issues I see in this chronically-ill-world. I also write about the discrimination I see in the disability world. I share my experiences in both those areas, as well as mental health. Some of my chronic conditions not listed above, have to do with mental health, as I am bipolar, struggle with OCD and PTSD and severe anxiety. As many people can relate, when my chronic illness is flaring, I tend to feel a spike in my mental health issues. Meaning, my anxiety ramps up, my OCD goes a little bonkers and I may get depressed or even slightly, manic. It’s all very interconnected. Today, my writing is more, catch-up. Less focusing on specific things, but rather this monster of chronic illness as a whole. It really is like a vast eco-system, and when something is off, or when something is out of control and flaring, it bounces off and affects the other things. These last two weeks, I think I might have gotten a glimpse of how our actual eco-system is feeling in the midst of all this climate change. It’s been brutal.

I had started a chat on Twitter (which you can follow me @lovekarmafood) on whether or not to take the chance with another gastroenterologist. Something else I am sure you understand, is when you know something is wrong with your body and you don’t feel the doctor is understanding or listening, but being afraid to find a new doctor and having to start from scratch again with tests and meds because, frankly, it’s exhausting. Not only is it physically exhausting having to go to the appointments, but it’s mentally and emotionally exhausting. I am pretty close to starting that search for a new doctor, especially after this week. It was probably the worst IBS flare of my life, with stomach pain that was worse than labor pain and was reminiscent of Aliens for me. But I didn’t go to the hospital. I’ve been there before for an IBS flare and it was not worth the visit. Once they know you have something chronic, they do their best to make you comfortable, but pretty much tell you to see your doctor. And in this day and age with the opioid hysteria, I’m not sure what “comfortable” would mean. Sometimes I feel that as an advocate for chronic illness/pain, and as a writer, chronicling her journey through this illness and pain, it should be easier for me to vocalize with doctors what I am feeling and what I am going through, but I’ve learned something. Doctors (not all) have a way of making you feel that they know best. Some come off as arrogant, while others come off more like a parent, but either way makes you feel like you don’t even know your own body. It’s terrible. And partly the reason for my reluctance in finding a new doctor. But I would really like to feel better, long term, with this IBS.

So that is a little about what’s been going on in my life. Stay tuned for the next time where I’ll be talking about our non-spoonie friends and their well-meaning, but irritating: “I hope you feel better soon,” followed by, “You’re not really disabled,” for my friends (like me) with disabilities.

POTS Syndrome

POTS syndrome is also known as postural orthostatic tachycardia. It is one of a group of disorders which have orthostatic tolerance (OI) as their primary symptom. Orthostatic intolerance describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position, fainting. [https://www.inlifehealthcare.com]

Symptoms Include:
Fainting
Heart palpitations
Shaking & sweating
Weakness & fatigue
Dizziness or light-headedness
Headaches
Poor sleep
Chest pain
Feeling sick
Shortness of breath

3 Types of POTS

Neuropathic POTS
Hyperadrenergic POTS
Secondary POTS
Neuropathic POTS
This is essentially nerve disease. Here, the sympathetic nerve supply to lower limbs does not function properly and so there is pooling of the blood in the lower extremities rather than being returned back up to the heart. This leads to dizziness on standing and an increase in heart rate. This is the most common form of POTS.

Hyperadrenergic POTS
This is a case of high adrenaline. These patients have high levels of norepinephrine in their blood. This leads to increased heart-rate and blood pressure. While neuropathic POTS has lower blood pressure and higher heart rate when standing, hyperadrenergic POTS typically has both increased blood pressure and heart rate when standing.

Secondary POTS
This refers to POTS syndrome that is a result of another under-lying condition that leads to damage of the nerves that usually control the re-distribution of blood. These under-lying conditions can include diabetes, lupus, alcoholism and chemo. [https://myheart.net/pots-syndrome/types/]

Some Spoonies Worst Symptoms and Some Advice:

Stephanie shares: “Right now, I’m struggling most with temperature regulation and sweating. I’m always getting hot and cold at the same time! And I get so fatigued from standing it’s crazy!”

Adara shares: “I can’t stay standing for very long due to dizziness, drop in bp, heart rate and lips going blue. Hands and feet go red and purple and I get brain fog and fatigue. I use a wheel chair now. (I was once a badminton player) I was diagnosed after ten years- took a print our of POTs information to my doctor.”

Adara gives some advice to POTs patients: “Drink lots of water and salt (always carry emergency salty snacks, the way diabetics carry sweet stuff). Wear compression socks, stay cool, use a shower stool/seat and if you want to try physiotherapy/medication, then ask loudly and don’t be given no for an answer.”

A Brief Tale of Kristie’s POTS Experience:
I “spoke” to Kristie Johnson, of Migraine Mantras (Migraine Mantras), via Facebook messenger. She’s been dealing with POTS for eight years now, before doctor’s finally began looking into it and was finally diagnosed two years ago with it.
When I spoke to her about her most aggravating symptom’s she told me this:

“I have the most trouble with blood pressure drops. I get up slower, turn slower, anything I can do to avoid passing out. Gatorade and body armor are the only thing helping me right now. I know when I’m about to pass out, 90% of the time (ringing ears, dizzy, blurred vision or blacked out vision) and can sit or lay down before it happens. Sometimes I can’t catch myself. I’ve fallen down the stairs, fallen into things, washer, a dresser, etc.

When talking about her symptoms, length of time she’s been struggling with her symptoms and her recent diagnostics, she told me:

“Local docs won’t treat me, and I’m actually being sent to a hospital a few hours away to see an autonomic specialist for treatment. It’s 3-ish hours away in a Medical Center in Norwalk and I’m on disability so money isn’t something I have a lot of.”

I also asked her which POTS she was struggling with.

“Reading into it I mostly fir into the Secondary POTS category because I have under lying issues like Lupus and nerve damage.”

Sharing Stories Brings Awareness

Like so many others, Kristie is struggling with POTS and it is my hope, that through the sharing of these and so many other stories, we will bring more awareness to POTS and other chronic illness, to those who do not know or do not understand enough about them. We have begun to learn, the impact our voices have. I encourage everyone to share their story with people everywhere, because you don’t know whose life you will touch. When we are silent, we often feel we are alone. When talk and share these stories, we are suddenly catapulted into a community who can listen and support us.

As always, thank you for reading. Thank you for supporting my blog.
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I recently hit 1000 followers on Twitter and I want to say thank you to all my followers there who support me. If you’d like to follow me my handle is: @fibrohippiechic and you can follow me on Instagram: @lovekarmafood
Let’s keep sharing our stories!

The Problem With Comorbities

It all began with one chronic illness- or did it?

At times, I wonder how this all began for me. I was never the poster child for health, but neither was I on the sidelines of life as much as I am now. I think if not all of us with multiple chronic conditions, then surely a great many of us, ask themselves the ever-looming question of: ‘How did this all start? What did I do?’ I think about this often and as I have discussed in my post On Becoming Sherlock, it feels like I am always trying to connect the dots; trying to find that Holy Grail of answers to why I am sick.

Recently, I have been more frustrated with my comorbidities than usual. It’s as though I have reached a tipping point and I am not sure when it happened or if it is more related to the symptoms of each chronic issue, rather than the issue itself. In the beginning, it was pretty easy. I grew up with asthma and allergies, which often led to chronic sinus and bronchitis. But I was a kid and I suppose, while it sucked, I assumed I’d grow out of it. Amusingly enough, I grew out of a lot of things like my allergy to chocolate and cats and dogs, but my asthma stayed and when I get sick it nearly always turns into bronchitis. As an adult, I traded more child-hood illnesses for more grown-up ones and I wish I could swap.

At first, it was manageable and there was the illusion that with each surgery, I might be cured. Bulging disc became laminectomy, which later on evolved to spinal fusion. Avascular necrosis in my left hip was treated with core decompression, which eventually turned into total hip replacement. Sacroiliac Joint Fusion became SIJD Fusion. I’ve had surgeries for carpal and cubital tunnel, surgery for tennis elbow and surgery for torn meniscus. Still not feeling well, I fought to find that magic diagnosis, the reason to why I needed so many surgeries before 40. That is when the gates were thrown open and a flood of answers came forth.

Degenerative Disc Disease, Fibromyalgia, Rheumatoid Arthritis, Psoriatic Arthritis, and Chronic Pain from failed surgeries. Let’s not forget that my Asthma did not go away, I also developed Chronic Migraine and in the mental health department I was diagnosed as Bipolar II when I was 22, but I also developed OCD, Anxiety and PTSD (which is more PTS these days as symptoms are generally controlled.) My point to all this, is when I am unfortunate enough to have to go the hospital, or have to venture out to a new doctor and I get that dreaded question of, “Do you have any health issues you take medication for regularly?” I freak out. I freak out because scene one is that I whip out my handy-dandy cheat-sheet, a piece of note-book paper with everything listed and hand it over, where I get the “look” from the nurse. You know that look. Or scene two, try to remember everything off the top of my head, which is probably not the best idea given my Swiss-cheese-of-a-brain, rattle off a handle full of stuff and sounding like I am trying-out for a High School play (a part I am not going to get) and still get the “look.” As though I am making stuff up, because, you know, everyone wants to have a ridiculous number of things wrong with them at a near 45 yrs. old.

However, after this deluge of diagnoses, I am no where near a cure and I feel the weight of these comorbities heavy, on my shoulders. I’m pretty sure you can relate, so I’m sharing with you my:

Top 6 Problems with Comorbities

• The Roulette Wheel: Constantly feeling like my life is the personification of a roulette wheel and every morning I wake up it’s the big spin of the wheel of symptoms to see which ones are going to act up.
• Symptom Management: The act of simply juggling my symptoms and trying to manage my pain is exhausting. I (we) are the center of our own universe and all of us have responsibilities outside our health. That never stops.
• Treatment (natural or medical): Another problem encountered when you treat one disease and it wreaks havoc on the other(s). You feel like you are constantly chasing your tail and feel as though you are destined never going to be able to get ahead of this.
• Ripple Effect: A flare here means a flare there, and there, and there, and there…ugh. It’s like a domino effect of your illnesses that make your head spin.
• New vs Old: Not knowing if a new symptom is just another symptom of an already established issue or if it is something new entirely, AND THEN, which doctor to call.

I hope this made you laugh, and even if it didn’t, I hope you know you are not alone. We’re all in this crazy, chronic life together and whether near or far, we’re connected because of it. As always, thank you for reading.

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Relationship Between Chronic Illness and Assault

A personal experience #MeToo

I have done a lot of reading about how stress can affect the immune system and how it can have a pretty hefty hand in our over-all health. There are even some doctors who believe that stress is a major contributing factor in autoimmune disorders. This is not to imply a direct cause an effect, but something that I think is interesting and may warrant further review. In my own case of rheumatoid arthritis and fibromyalgia, I can see where stress throughout my life may have had an impact, however, in my daughter’s case I do not seem the same correlation and she also has the same diagnosis. Something to mull over.

My reason for writing this is many. The Kavanaugh hearings and controversy surrounding it has been very difficult for me. In fact, last week was probably one of the worst weeks I’ve had in a long time. The painful memories this brought back affected my mental health, emotional stability and physical well-being. Even I was surprised by the totality of it. Something that I haven’t thought about much in roughly 30yrs, was brought into acute focus. Not only was it brought into forefront of my memory, but the discussions surrounding the Kavanaugh case and the arguments on both sides made me question decisions I made when I was no more than a child. So, I am writing this as a survivor who supports and believes other survivors and as someone who struggles with many aspects of her health posing the questions: 1.) Did the stress of my assault predispose me to chronic illness? 2.) Did it predispose me to my mental health struggles? 3.) Does reliving the experience via these hearings cause more harm?

To answer the third question first, I actually feel that while it has been a very painful experience to listen to the testimony of Dr. Ford and Judge Kavanaugh, that it has in some ways brought further healing through discussions with my husband. A question that re-surfaced not only because of these hearings, but because of the #MeToo movement itself, has been the price of my silence. I never said a word of what happened to me as a kid to anyone. I was far too frightened of my assailant and moreover, I was terrified of what bringing it to trial could mean for me and my reputation. Not because I was a promiscuous teen-ager, but because I’d flirted with him, he was older than me and I felt it would be used against me like “I was looking for it.” Thirty years later, the question that arises from all of this for me and the pain with it is: “Did my silence lead to more girls being assaulted?”  “Should I have said something?” and, “If I saw my assailant was about to be nominated to the Supreme Court, would I bring it all back up?” No easy answer there. And as my husband comforted me he reminded me that not only was I just a kid who was scared, trying to protect my parents from the grief and anguish of not being able to protect me and the ordeal of a trial, but that even if I had said something it would not necessarily mean I could have prevented further attacks. I don’t think that the reliving of the experience through these hearings has caused more harm, but I do think that hearing the issue of assault as a partisan matter has caused some harm. It not only re-injures the child-victim within me, but also the adult who struggles with how assault can be seen as anything but abhorrent and wrong. Not Republican or Democrat. Not something chalked up to boys will be boys or wild antics of a youth. Because while the boy who may have drank excessively and tried to assault someone or did assault someone grows up, never held accountable for his actions, and revered for successes as an adult, the survivor of that assault never forgets, deals with the emotional injury done to her for a life time and may end up with life-long struggles because of that. Though I understand there is only a small window of opportunity to be able to criminally charge someone, and that after that time there is no way to really hold someone accountable, I think the true crime here is that women feel and have always felt, that if they say something they will be the ones to stand trial, they will be the ones to be picked apart, not their assailant.

Jumping to my first question, did my assault predispose me to chronic illness? Sadly, I am unsure. One of the things I believe my assault did, was predispose me to thinking that this was supposed to be how I was treated. There was no longer a boundary between allowed and dis-allowed behavior from boys and later on, men. In High School I was constantly touched when I didn’t want to be, whether it was the juvenile “snapping of bra” or slapping my rear that sent boys into fits of laughter, especially and even more heartily, if you got angry about it. I did not have healthy relationships with boys and that would eventually land me pregnant and married at 19. This was an abusive marriage that I stayed in for four years because not only did I not know how to get out but I believed it was deserved. The job I held during that time was also ripe with sexual harassment, something I felt was just par for the course and all women were treated this way. No one said anything and I simply tolerated the behavior of men who would touch me without permission and just chuckle about it. There was stress everywhere in my life and I can’t even quantitate it. So, while the initial assault may not have predisposed me to chronic illness, it predisposed me to consistently being in environments where sexual harassment pervaded and where I was under continual stress, which may have made me more susceptible to chronic illness.

Looking at my second question, and whether or not it had a hand in my mental health issues, yes. I believe that my assault caused severe depression.  While my brain may have been hardwired for bipolar, I believe that the assault and continuous environments of sexual harassment, coupled with a marriage that was abusive in all ways, exacerbated my mental health and caused my OCD and anxiety and left me with PTSD. It has taken many years to come to terms with things that happened to me and to be able to function as well as I do and more importantly, be happy. Much of it was done without clinical therapy though I do see a psychiatrist who monitors my health, I’ve used writing as my therapy and sharing my story when I can. I’ve never shared my story as publicly as this before, but I felt that with everything going on it was high time. My whole purpose for my blog is sharing my experience of chronic illness with others, so they know they are not alone. My assault left me with chronic memories and I felt emboldened by others who are sharing their experiences to share my own so men and women who have experienced an assault know they are not alone.

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Mistakes Made When Traveling

With Chronic Pain/Illness

 

We have friends who have a ranch about 5 hours from here, give or take with traffic. The drive, from my point of view, isn’t too bad on a mild pain day and we typically stop mid-way for snacks and just to get out for 2o minutes. The problem, however, is that even someone who writes about chronic pain/illness all the time is bound to make a mistake when traveling. Here are a few of mine from this past trip (I’m sure there are more).

 

  • Cover your bases: In effort to travel light I didn’t pack a sweater or jacket. Though I do better when the temperature starts dropping, I also seem to feel temperature changes more acutely, so when it drops below 70֯, I typically need a sweater. We left home at 90֯ and then arrived at the ranch bringing the rain with us and a drop-in temperature to about 60֯. I was freezing my butt off and miserable so that I couldn’t enjoy myself outside as much as I wanted to without shivering.
  • Don’t be a slave to fashion: I’ve been lamenting my jogger and legging wardrobe and wanting to wear my jeans again. I’ve never been stylish, but constantly in leggings and joggers has begun to wear me down a little and I do love jeans. I found two pairs in my closet that seemed to fit comfortably, but I only wore them for about 30 seconds. That didn’t stop me from bringing a pair along and instantly regretting it after the first 30 minutes. I was so very uncomfortable that I wanted to cry and realized how stupid I’d been to give into a sense of fashion when pain is involved. I have to take care of me and part of that is dressing in clothes that don’t make me want to cry.
  • IBS Doesn’t Go On Vacation Even When You Do: I had a good week in the IBS department so I was pretty optimistic for this little weekend excursion. But IBS doesn’t take a holiday and that second day, right after lunch, all hell broke loose. There is nothing more embarrassing than having a diarrhea flare up in someone else’s house. I did have medicine, which helped, but those damn jeans- ugh, I was so uncomfortable!
  • The Perils Of Eating On The Road: I’ve talked about before how stressful eating is when you are dealing with something chronic like IBS. My situation is like many others where it’s basically Russian roulette. I toggle between trying to be careful of every bite and not giving a damn because it doesn’t seem like there is any rhyme or reason to it. When you are traveling and maybe needing to eat on the road or perhaps like me, at a friend’s home whose cooking you are unfamiliar with, it can lead to issues. This experience has caused me to consider perhaps bringing some things in a cooler that I know don’t bother me so that I up the odds in my favor and maybe don’t have a flare.
  • Feeling High-Maintenance: I said no to bringing my heated blanket or an extra pillow or two. Seriously, WTF was I thinking? I’ll tell you what I was thinking: I’m so complicated. I’m so high-maintenance. I can’t just travel a weekend without bringing half my house. Slap-self-silly. I know it’s only a weekend, but it’s not something I can go without. I know I’ll hear that horrible term, high-maintenance, in my head, but if I’m going to travel I need to practice what I preach, right? I need to bring those self-care items with me or be left unnecessarily miserable the entire time.

 

I think the biggest issue is not wanting to inconvenience everyone. When I look at myself and these chronic issues I deal with life has very much become about things I can do to make my existence more comfortable. However, when I step outside that little box and I look at all the things I do from perhaps the perspective of someone who has no idea I deal with chronic issues, it appears that I am a spoiled brat, or high maintenance. Almost worse than that is the perception that I’m so sickly that I need all these things which can lead to being excluded from activities, or not thought about being included because surely, someone who needs all these extra things to be comfortable couldn’t do that. My husband is very active and has friends who are very active and I hate being seen as his wife whom he needs to take care of. There are a lot of things I can still do, I just have to think about how to do them. And sure, there are things I can’t do, but I want to make the decision myself. Thinking about how you might be inconveniencing other people diminishes your importance and also your enjoyment of the trip. The whole purpose of getting away, for a short period of time or long one, is being able to enjoy it. So bring the extra sweaters, bring the heated blanket, bring the cooler of snacks and drinks so that you can enjoy the time away.

 

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