Plans

I like to think that I was given the gift of chronic illness because without it I would be an unstoppable, strong-willed force to be reckoned with and the world probably couldn’t handle that. I needed to be toned down a bit (feel my sarcastic vibes, universe). This shit really messes with plans… And I am the ultimate planner. Whether I stick with it or not, I just always need a plan. I know life is going to throw out wrenches here and there and I have become pretty resilient when it comes to getting knocked down and having to get back up and plan again. (Can you feel my ego through the wifi today?) 

Anyways. Feeling a bit knocked on my ass today… I got a stomach bug from my sweet babies and have been reenacting The Exorcist since last night. Set backs with my health always throw me into a bit of downward spiral. I’m feeling extra defeated because my neuro and I decided to try weaning me off of my biweekly Lactated Ringer’s infusions. We cut down to once per week for a month and I did have to be more vigilant about checking my vitals and staying on top of meds and fluids but overall I felt pretty good – I started taking small HIKES with my kiddos. So last Wednesday was my final infusion before going to PRN, as needed, status. The week went well until bam… haven’t been able to keep anything down since last night. I decided to not be stubborn and call for my nurse to come out today and I’m currently getting pumped up. I’m scheduled for another bag tomorrow since my vitals are crappy and I’m having pre-syncope symptoms. 

Why did my neuro and I decide to do a trial of no IV infusions when I was doing so well on them…? A few reasons. I continue to be very hesitant about having a chest port implanted but my arm veins are starting to build up scar tissue and blow pretty frequently. This trial would let us know if I still really need the infusions or if my body can function a bit better without them after having a year of them relieving some physical stress. If it seems I still need them regularly, I will agree to the port. If I do okay without them then we haven’t done an unnecessary medical procedure. 

The other reason I really wanted to test how I’d do without my IVs is because I will be losing my medical insurance eventually. My children’s father lives in Europe and has for the last year and a half. We’ve been separated for awhile but I am still covered under his insurance, which pays for nearly everything. My infusions alone cost over $3,000 per month and that is not something I’d be able to cover. I will need to go back to work in order to get some decent insurance and pay our bills. 
When I’m feeling pretty good and not having flares, I think, “Hell yeah I can do this by myself!” I can work, get the kids to school, put them in an after school program, pick them up, do homework, cook, clean, grocery shop, get them to sports practices and games, keep up with my medical appointments, take care of myself, and sleep somewhere in there. Of course I can rock that shit. But then I really sit down and think about how often my kids are sick and then how often I get sick on top of the dysautonomia and there’s no way I could hold a steady job with how much I’d have to call out. There’s no way I could keep up that insane pace and not have a major crash or mental breakdown. Single moms who aren’t chronically ill have a hell of a time doing it all… I’m insane to think I could do it. On top of all of that, I desperately want to go back to school. I do have family who always steps in when I need help but the day in, day out is just me. Their father will never be around. And that stubbornness in me doesn’t want to depend on anyone ever again – that’s part of what got me into this mess. Flares make me less of a dreamer and more of a “realist”.

On the bright side though, my hematologist released me for a year. My hematocrit and hemoglobin have fallen steadily since I got sick and he was starting to get concerned. He was going to schedule a bone marrow biopsy if my levels fell any further at my check last month BUT they went up slightly. The hematology junk will always be in the back of my mind but he’s been a very vigilant and throrough doctor for the last year and a half and I trust his opinion. 

To end this entry on another positive note – I have gained over 15 pounds since this time last year. I was fighting so hard to stay above 100 pounds and now I am only 5-6 lbs from my pre-sick weight. My joints are murdering me right now so off I go to take a Tylenol and pray that that sucker stays down. Ever puked one? Ew. 

Still Here. 

Life has been better lately – health wise. After my neuro switched my IVs to two liters of Lactated Ringer’s solution every week, I’ve noticed a huge difference. My blood pressure is more stable, my potassium and calcium don’t drop to “critical” levels and cause arrhythmias. I haven’t been in the ER, aside from one scary unresponsive episode with lights and sirens…🙄 My nurse was fortunately here for that – but that was before starting the LRs. I have more energy. The heat here is awful but hasn’t affected me as much as last year, pre infusions, when I was mostly bed-bound. I have more good days than bad days, it’s amazing. Sometimes I forget I’m a “sick person” and stress seems to be the only thing sending me into a downward spiral at times. I’ve been better at managing that lately and trying to figure out my personal life – or live in denial. Either way. 

My neuro suggested a chest port for my fluids. It would make it possible for me to access the port myself and stay accessed for longer than the IV. Travel would be easier. Most port experiences seem to be positive but I get hung up on the negative. I’m still considering it though. I’m also at a point where my doctor thinks I’m ready to try physical therapy – the POTS protocol that is pretty controversial among patients. I’m willing to try it, I just have no motivation with this heat and finding childcare is always… Meh. 

I don’t think I ever updated about my geneticist follow-up. My testing for vascular CTDs came back negative. While I feel like I fit the hypermobility EDS diagnosis much more, my geneticist said the severity of my other conditions lead her to give me the classical EDS diagnosis. Fifty percent test positive for this gene and she is convinced I’m part of the 50% that does not. Either way, I’m just relieved to have the EDS diagnosis in my file so that my other physicians will follow precautions for that. 

My hematologist isn’t incredibly impressed with my blood work but not concerned enough to do a bone marrow biopsy at this point. If my hemaglobin drops more in 3 months, he will suck out some marrow 😬 but for now it’s “anemia of chronic disease.”

I’ve put on ten pounds in the past couple of months. Ten more and I’m back at my “normal” weight. Yay.

Not much else… Most days are pretty good. Some days I feel hopeless and alone but I’m doing the best I have since getting sick and I’ll absolutely take that. Semi-positive post, whaaaat?

72 days…

…since I’ve felt like writing anything. I’ve given up on this blogging thing for the most part. It’s exhausting and I have a hard time putting my thoughts into words that actually convey what I’m feeling.  I’ve been back in Phoenix for about 9 months now and haven’t really done anything… I care for the kids the best I can, go to the doctors, get groceries, and occasionally spend some time with family. Our life takes place within a 5 mile radius – at least 75% is in 900 square feet. I’m at home, always wishing I could take the boys on an adventure – just the zoo would be fine – or “I should get in touch with so and so…” but it doesn’t happen. I don’t reach out unless things are bad medically – something I’m supposed to be working on, oops. There are so many people I want to see and things I want to do but so often I can’t. I don’t make plans because 1/2 of the time I have to cancel or reschedule them. I struggle driving on freeways or long distances and Phoenix is a freeway… This shit is just plain isolating and depressing. Another reason I don’t reach out – I’m not the same as I used to be. Obviously physically, but I’m a spaced-out, stuck in my head, socially awkward (not in a funny way) mess these days. I don’t take the kids to the zoo or the train park by myself because of fears of passing out or needing to get horizontal pronto and being the only adult there for them. I can usually manage quick trips to the store myself because I’ve memorized where things are and the exact pattern I need to walk to get them and get out as quickly as possible. If not – Safeway delivers!

Anyways, if I haven’t been in touch with you since I’ve been back, I apologize. If I have, I’m sorry I don’t reach out more. I want to get out and do things but life has different plans at the moment. I also have a petty confession – I get angry when I see families out and about, spending time doing fun things together on the weekends. Anger makes me withdraw even further into my little world. This is something else for me to work on, just accepting that everyone is living under different circumstances. For the outside world, I try my best to put on a brave face and post pictures that are, for the most part, not our everyday reality… Right now we’re closing in on 1:00pm, I’m laying in bed again (still in PJs), the boys are tearing up the house, not listening to me, and probably pissing off the neighbors… And it’s another beautiful day outside they’re forced to miss out on, filling me with that lovely guilt. I don’t know if I’ll ever fully be able to let go of the guilt. I didn’t sign my oldest up for soccer again because I just couldn’t do it, he’s late to school everyday and come August when attendance becomes important, good Lord – help us. I try to remind myself they’re fed healthy meals 90% of the time, they’re loved, they have a home… But sick or not sick, moms seem to be the best at beating ourselves up because “they deserve better”. 

 Dump and throw is a favorite: 

Medically – I’ve been started on saline IVs at home to help with low blood volume (Hypovolemia) and to try to prevent dehydration (fewer ER trips is the goal). I am seeing my geneticist this week for the results of my testing, my neurologist for follow up on the IVs and migraines, hematologist to check on the anemia and slow clotting, and next week the cardiologist. I suppose that’s it. 

I lovingly refer to this as “The Picture That Launched a Thousand Shits”: 

  
As usual, this whole entry was sparked by reading an article online about chronic illness and isolation… Found here.

“It’s heartbreaking not being able to be who we are, express who we are, much less care for and love those around us how we once did before the pain. Aside from feeling like we’re a burden or letting others down, it’s immensely isolating being unable to live a normal life.”

Good Read

This article has been floating around for a couple years. I read it last year and it really hit home for me. It popped up in my “past shares” on a Facebook app today and I wanted to share it again on here. If you’re living with a chronic illness and haven’t read it,  I highly recommend that you do! 

What’s Wrong With Me?

“One of the hardest things about being chronically ill is that most people find what you’re going through incomprehensible—if they believe you are going through it. In your loneliness, your preoccupation with an enduring new reality, you want to be understood in a way that you can’t be. ‘Pain is always new to the sufferer, but loses its originality for those around him’…”

Been Awhile. 

I haven’t felt like writing anything for a few months. Needed a break… I had reached this phase of “acceptance” regarding being chronically ill and was dealing with it relatively well for a bit. At least I felt like I was. I’ve hit this wall again where I feel completely unsettled, scared, and hopeless. 

When I look in the mirror, or see a picture of myself, I have a hard time understanding why I’ve been kept at this weight and BMI for so long. My body feels like it is struggling to keep going.  

I like my doctors here – I really believe they have my best interests at heart and they seem fairly well versed in dysautonomia. I think since my last entry we’ve added a hematogist to my specialist list because of unexplained anemia and possible clotting issues. I also have an elevated IgA level but I decided to stop Dr. Googling that until I feel up to calling about it. 

I met with the geneticist last week and she’s running a 16 panel test to look for connective tissue disorders that may show up in DNA testing. I have to wait for some insurance mumbo jumbo to be figured out, then I can have my blood drawn, sent to Maryland, and those results will take 3-4 months after that happens. My sweet zebra testing kit:    

My GI doctor sent me for a SIBO test (small intestinal bacterial overgrowth) that just involved fasting, drinking a shot of some sugary crap, and breathing into a tube for 3 hours. The results came back – normal. SIBO can be a result of the poor gut motility that often comes with dysautonomia – because the intestines aren’t moving appropriately, bacteria can build up where it isn’t supposed to and cause malabsorption, GI discomfort, and weight loss. No dice there though. I recently got down to my lowest weight since becoming sick – 103 pounds. With a lot of work I’ve gotten back to 105/106 at max but can’t get above that no matter what. Laying on a mattress hurts my hips, ribs, and shoulders because there’s just skin between the bed and bone. I’m desperate to gain even 5-10 pounds and praying at my next GI appointment, we will have other options – I’ve done all of the tests he wanted to rule some possibilities out. 

I had a bad reaction to my medication that I take to raise my blood pressure (midodrine). My dose was increased and caused bradycardia (low heart rate), uncontrollable shaking, sweating, odd skin texture, and confusion. But hey – we got my blood pressure to normal! The side effects from that went on for a few days and I’m back on a lower dose.   

I don’t know what else. My whole point in starting this entry was actually to share something another patient with dysautonomia posted online. I liked it, can surely relate… Maybe you will too. 

 I hate the burning sensation that I get in my head,  

Mitochondria malfunction; I’m stuck in my bed.

I hate staying home when I need things from town,

My heart rate goes up and blood pressure down.

I have difficulty travelling; I can’t sit for long,

My muscles are weak when they used to be strong.

I hate being sedentary, so inactive and slow,

When I used to have energy; always on-the-go. 

I endure twitching muscles and migratory pain, 

I hate my blood pooling, the effects on my brain.

I lose clarity of thought and it slows my cognition, 

Causing muddled up sentences and word repetition. 

I hate all this resting and having to ‘pace’

I’m just as fatigued and I can’t win a race.

I still have my humour; though it’s just not as fast

And I hate my ‘quick wit’ is a thing of the past.

This list is not exhaustive of the things that I hate

But now I’m exhausted; a familiar trait.  

“Invisible” Illness Awareness Week 2015

I’ve read several great blogs and articles on invisible illnesses lately. My mind is very preoccupied with worry about an appointment I have at the end of the week but I wanted to write something. I guess if you’re just skimming the surface of people with chronic illnesses, things may seem invisible, but when you know someone well, and if you just pay closer attention – there isn’t anything invisible about chronic illness. You CAN see pain and the changes that have happened. Especially if you knew this person before they got sick. The spark in their eyes dims, their smile changes, their hair and skin dulls, their weight often fluctuates. This picture shows me 2 weeks before I got sick (in the pink shirt) – happy, healthy weight, full face, glowing skin, full of energy, feeling alive. The picture next to it is me about 8 months after getting sick, and a little less than a month after I got my diagnosis of dysautonomia. I am grotesquely thin – slightly hidden by my thick jacket, my eyes are sunken in, my skin is sickly pale – I’m smiling but it was forced. My mom was in town visiting and I just wanted to get out of the house. It had been a rough day. We walked down the street and back. So while we may not have completely transparent signs of illness… If you really pay attention to a loved one with a chronic illness, I can guarantee you will see at least one thing that has changed in them since they became ill, or while they’re flaring. 

The Novel on the Bottle

I had a scope last Friday to try to figure out the weight loss. It went all right. He took some biopsies to test for a few conditions but otherwise things looked fine. I recovered better than I thought I would from the anesthesia. The next day though I spiked a fever and had chills and my beta blocker wasn’t bringing my heart rate down like it usually does. I just felt horrible. The GI on call told me I needed to go in to have infection ruled out. Fortunately my in laws could watch the boys and bring me in. My nurses were nice and took great care of me while I was there.   My CBC showed the same thing that’s been happening over the past 6+ months. My hemoglobin, hematocrit, and RBCs have dropped more. I know it’s normal for CBC levels to bounce around but mine never bounce up, it’s a steady downhill and my levels are out of range and of course I’m freaking out. My potassium was low, it often is, and my calcium has dropped more – that’s been happening since I had my thyroid removed. No word on the blood cultures for bacteria but I called the nurse at my GIs and she said she’d call if they were abnormal. No call, I assume normal. I’m still feeling pretty low – like I’m about to get the flu but don’t. I get this frequently but usually not to this extent. My joints, skin, and throat hurt. My fever is gone but I still have chills and then get really warm. So tired I could sleep in a dumpster. I have some swollen lymph nodes and I’m pretty good at freaking myself out. Maybe the blood levels aren’t something as sinister as I believe them to be but who knows. Maybe it’s simple anemia from the malabsorption. My tachycardia is worse and I am scared to go anywhere because I feel like I’m going to pass out sometimes when I’m driving and have to pull over. I had to lay down in my car after running in to the store to get some evil Powerade yesterday after another test. It’s like I can’t get myself hydrated no matter how much I drink. 

I don’t know how I’m getting out of bed. My poor kids are stuck with a mom who is sick, angry, lashing out at them for just being kids… I am heartbroken and feel so guilty for how I treat them at times. I can’t cope with the constant fighting and crying and there’s not a damn thing I can do to change anything. I don’t feel any joy and all they want is for me to be playful and silly with them like I used to be. I do make a good highway though.   I picked up the Cymbalta that my neurologist wants me to try and after reading the novel that came attached to bottle, I freaked – I am waiting until I see him next month to talk about it some more. Plus I don’t like starting new meds when I’m alone with the kids.  I suppose that’s it.