my love affair with SSDD

With February long gone, it’s kind of hard to keep saying it feels like Groundhog Day. It doesn’t have the appropriate ring to it anymore, especially with April almost nearing an end. (Yes, it’s almost the end of April and my symptom merry go round continues; with nausea being the acute symptom of the month, along with tingling hands and feet and the vile return of night sweats. Actually the list goes on but I reserve the long list for my doctor appointments, it’s too depressing otherwise.) Anyway, recently a friend texted a reply using SSDD. I had to Google what SSDD stood for. Same sh*t, different day. ‎I fell in love with it immediately (thanks, Susan, I love you too, my friend!).

It had a similar concept going for it like Groundhog Day, had a great ring to it, and clearly was hip (unlike me, as I had to Google it after all). It then got me thinking, maybe it was also about different sh*t, same day (DSSD) too. I mean my symptoms can change within the day too. ‎But does it really matter what symptom it is? All symptoms are sh*tty; just a variety of and/or an intensity of. But definitely sh*tty. So I’m stuck on SSDD, in fact I’m still in love with SSDD. So much that I had to share with y’all in case I now start answering with a simple SSDD, and now I’ve saved you a Google, assuming you’re not hip like me. #sickbutstillsassy

 

doctors are NOT gods

Much like when we’re kids, we think life like fairy tales have happy endings. Similarly, I grew up thinking doctors were gods. When I got sick, I expected doctors would heal me…and they did. Not to mention, my dad is a doctor, so I think I was bound by that logic that doctors always knew best.

When my medical journey began, I didn’t seek multiple opinions. Instead, I questioned my own failing body as it continued to get worse and worse over time. Between January 2014 and March 2015, I kept going back to the same “renowned” institution seeking answers with the exception that I had to also find a primary care physician (PCP) in my home state of Colorado (and thank god I did, because ironically he would become one of my life savers, who is still captain of my care team). After my initial visit in January 2014 to the institution, which yielded little beyond diagnoses of “lactose intolerance” and “mild orthostatic intolerance (OI)” – the pervading theory seemed to be that my body was struggling to bounce back from the nine months of the TB medication that I had to take and that I could be suffering from depression; because at that time, the worst symptom I was contending with was fatigue. At this point in my medical journey, I didn’t know enough to question this coordinating physician, other than to know that I felt worse than the inability to bounce back and that I knew I wasn’t depressed. I was “ordered” to drink lots of water (which I already did), increase my salt intake (I already ate a salty diet), purchase medical compression socks, and start a lactose free diet – and that was all folks, besides researching local PCPs in Colorado.

Despite following the “doctor’s orders,” a month later, I did not feel any better. That same month, in February 2014, I would “interview” a local PCP in Colorado, who was shocked that I had not been tested for autoimmune antibodies at the institution a month earlier. Based on my symptoms, history, and family history, he was convinced I had an autoimmune disease. Well readers, he was right – and I finally felt some sort of validation and relief. My blood work came back positive with a very high SSA and positive ANA. That should have been the sign that he knew way more than the doctors at the institution…

Stupidly (hind sight is always 20/20 they say, right?), I contacted the coordinating physician at the institution and she had me return a month later to see a rheumatologist, who confirmed I had early Sjogren’s at that time in March 2014. This is when I was started on my first prescription drug, Plaquenil (the generic known as hydroxychloroquine). Ironically, the coordinating physician at the institution was still talking about depression. So I took the bait and let her send me to a psychiatrist during this visit too. Depression was ruled out – maybe only to her surprise. Yet the coordinating physician still lectured me. I understand that chronic illness and depression can go hand in hand. However, depression was NOT causing my symptoms. And fortunately still to this day, I have yet to succumb to depression; perhaps depression is not in my DNA, perhaps it is my amazing supportive network, or perhaps it is my *sick sense of humor* (pun intended). (To those patients who are suffering from depression, please don’t be ashamed to seek help, if you are not doing so already. Living with chronic illness(es) is not easy.)

My body would continue to decline much to the dismay of my local PCP who continued to monitor me…and I would return to the institution, a year later, in March 2015. The Rheumatologist would add early connective tissue disease to the Sjogren’s diagnosis. And this time my visit would include seeing a neurologist. He would review my files on a computer screen. He would take my “mild OI” diagnosis a step further and say that “I was on the POTS spectrum” and would give me a “migraine” diagnosis as well. After researching what POTS was, I was furious. The tilt table test that I had done in January 2014, more than a year before, clearly showed I had POTS. Forget the “mild OI” diagnosis or “I was on the POTS spectrum” – I had POTS, more than 30 beats per minute within 10 minutes. Later, I would share the results with other specialists who would say, how were you not diagnosed with POTS initially? And by the way, the neurologist never examined me; yet the bill almost $800 said he did. And to add insult to injury, the coordinating physician, continued to tell me that I was just depressed – even in front of my mother.

Funny how this “renowned” institution never even ran autoimmune antibodies (instead it was a local primary care doctor in Colorado who had), funny how they continued to tell me I was depressed, funny how the neurologist lied and said he examined me, funny how they told me I had “mild OI” when I was walking around with POTS. It took not one, not two, but three visits to this institution for me to learn that doctors are not gods. I was finally done with this “renowned” institution after three visits and my faith in doctors would be forever shattered.

I wish I realized doctors are not gods during the first visit – or at least, after the first visit. But I guess you can’t fault me for being persistent and wanting to believe in the medical profession, particularly in the doctors at this “renowned” institution. This experience taught me that unless you have a black and white case like a broken bone, doctors will have multiple opinions, may not care, may not take you seriously, may think you are a basket case, may think it’s all in your head, may think you are depressed, may miss diagnoses completely, and/or may dismiss test results. Needless to say, I have experienced it all except for being called crazy or a hypochondriac – at least not to my face. And I continue to face doctors who don’t deserve to be called doctors. Yet now I am brave enough to “fire” them when I want to, because I don’t have to give them multiple chances to treat me like “crap”, once is damaging enough. I am equally empowered enough now to seek multiple opinions or to have multiple doctors from my care team weigh in when I feel it’s necessary.

I’m also really OK when a doctor says, “I don’t know” or admit when they have made a mistake or take the time to investigate with me. But I am not OK with those doctors who project their insecurities on me or lie. Despite all these devastating experiences, I continue to treat doctors with respect and so I expect the same respect in return, at the very least. I am not perfect and will never be perfect, especially when my brain is struggling to function. We are all human, even doctors. We all make mistakes, even doctors. None of us are god, especially not doctors. As patients we too have a voice in our own care, so don’t be afraid to question your doctors; sometimes it may just save your life.

Please note that I have greatly shortened the events that took place during my three trips to this un-named institution in this post; it would likely be a three hundred page novel otherwise. The dates and other details however are factual and accurate – and continue to haunt me, which is why I am hoping by sharing my experience that patients continue to respect the profession but needn’t be reverent, especially in situations where your character is maligned instead of being properly diagnosed.

Sjogren’s | I’m A-W-A-R-E, are you?

April is awareness month for Sjogren’s. Last year, my April post on Sjogren’s was aptly entitled I was N-A-I-V-E (http://wp.me/p4OQn7-ad). In my autoimmune world, I now know more about this disease, but sadly even in the medical community there is still a lack of awareness.

According to the Sjogren’s Syndrome Foundation (https://www.sjogrens.org), Sjogren’s (pronounced SHOW-grins) was identified by Swedish physician Henrik Sjögren in 1933. It is a chronic autoimmune disorder in which the body attacks the exocrine glands. These glands, which include the salivary glands, produce moisture needed in the mouth, skin, eyes, vaginal area, gastrointestinal tract, and respiratory tract.

According to the Foundation:

  • While the “hallmark” symptoms are dry eyes and dry mouth, there are plenty of other symptoms such as fatigue and joint pain
  • Sjogren’s is the second most common autoimmune disorder
  • Nine out of ten patients are women
  • No single test confirms Sjogren’s
  • The exact cause of Sjogren’s is unknown

It’s quite alarming that despite Sjogren’s being common, it is often misdiagnosed. Doctors, we get that this disease is complicated, but please start educating yourselves on Sjogren’s. It is also disheartening that because many of us look “healthy” as patients, our symptoms are not taken seriously. Doctors, family members, friends, and everyone, what is happening inside our bodies is not necessarily and always evident on the outside so please remember that invisibility does not correlate to severity.

Sjogren’s presents differently for each and every one of us. Similarly, test results are just as different, which is why there is some tension among doctors when it comes to diagnosis. Some doctors will tell you that you need a lip biopsy to confirm diagnosis – and guess what it may take years for a lip biopsy to become positive. Sjogren’s is tricky no doubt. But it is imperative that the medical community, especially rheumatologists, educate themselves about Sjogren’s and not think of Sjogren’s in such a dry manner. Sjogren’s is a lot more than a dry disease and requires multiple doctors beyond a rheumatologist. #sjogrensisserious

i’m engaged!

No, no, I don’t suddenly have a ring on my finger. I mean let’s face it, most days I don’t want to date myself. So unless a prince charming happens to appear and sweep me off my (purple) feet, I’ll remain ring-less.

Ring aside, I’m serious, I’m engaged. As in, I’m sort of engaged again in society. ‎Remember, I went from a workaholic and avid volunteer to suddenly (and invisibly) disabled. But now I’m trying to kind of re-engage…albeit in a minimal capacity and one that puts my experience as a patient to use in a volunteer capacity as a patient advocate.

I was asked to create and lead a support group in Colorado for dysautonomia last summer by my specialist and the President of Dysautonomia International (DI). After some consideration and without knowing much, I decided to say yes. When I found out it was to be primarily on Facebook (FB), I freaked out. I had never been on FB and that was worse than not having been part of a support group before.

So instead, I began to focus on things that my former self excelled at, I began working on Guidelines for group leaders and Rules for group members – because I knew any group needed structure. Meanwhile, I sought other volunteers to help lead, including FB savvy ones. While I expected the group to launch last Fall, it didn’t and the group leadership has evolved with me being the solo link from the past to the present. But the group finally launched via FB last week and we plan to have quarterly in-person events. And with the timing I got myself someone willing to be my co-chair, so thank you, Ellen! Our team is rounded out by a super savvy FB princess and another confident moderator ready to impart her wisdom to other patients and caregivers.

It’s been exciting to build something that will be of help to fellow patients in Colorado and to be able to contribute something again to society. But ironically, this has been somewhat of a stressful endeavor for me to be responsible for something when in my former life this would have been something I’d have committed to on top of my full time job. I find it amusing – though not in the entertaining way – that even an hour or two of volunteer a week can be overwhelming in my current state. While you won’t find me much on FB (between migraines and not being a social media fan), I will be behind the scenes helping and leading when my body allows. Far from a real job and even a steady volunteer gig, but enough for me to say I am engaged, so here’s to building a safe and supportive community for patients with dysautonomia in Colorado and to spreading awareness! #sickbutstillsassy

update | my terrible, horrible, no good, very bad head

So my head continues to rage and it’s been pretty bad. Leaves a lot of time for staring at the ceiling and little else; not even watching TV, reading, or listening to music. This will mark the first March Madness (college basketball tournament) that I did not submit a bracket or two. And I have yet to watch a single game, not even on mute; again, another first for me. These are not firsts I am proud of or care to admit but there you have it folks, even a “couch activity” can now be ruined in my world.

But I digress, back to my [terrible, horrible, no good, very bad] head, as an update is long overdue.

  • I stopped Botox last year. I was clearly not a success story. After three sessions, I did not experience a decrease in the frequency (or intensity) of migraines.
  • I tried and had to stop Nortriptyline, an oral drug. It caused high blood pressure (BP) and high heart rate (HR) and as a patient with APS that is just not safe, especially when I was still dealing with a raging head (maybe if my head was clear we’d have considered adding a drug to counter balance the high BP and HR). Sadly I was on a low dose – which caused harmful side effects and likely may have been too low of a dose to actually be effective for my head.
  • My most recent experiment is another oral drug called, Topiramate. So far, it has not cleared my head; in fact, I don’t think I have even had a few hour window of a clear head since February and most likely triggered my POTS symptom of dizziness (and even nausea?). Again, I am on a very low dose and struggling, which doesn’t bode well. This experiment may soon come to an end, but I am reluctant to end it as I am really not sure what oral drugs are really left to try at this point. I may be willing to concede some increased dizziness for a clearer head if I can make it a higher dose that is more effective for my head.

Between these most recent fails and all my past prescription drug failures has me thinking a lot about this industry. Why do drugs have so many side effects? Why are some people lucky and don’t have to contend with any side effects? (And if I were to really go on my soap box, I’d go off about why there are so many TV ads for drugs (and why celebrities/athletes endorse drugs). This to me is not appropriate!)

In the interim, I continue to explore alternatives to medicines (I still lament that acupuncture and chiro have not been the solution either!). My latest is that I recently purchased an acupressure mat. (There are quite a few brands out there; I went with one that had good reviews and wasn’t the cheapest but didn’t break the bank. I bought it through Amazon and the brand is Nayoya. It has a pillow and a carrying case too. You can buy it elsewhere too but here’s the Amazon link. It is touted for back, neck and head pain.) The first day I used it, it relieved some of the pain in my head, but triggered extreme nausea. I don’t know if it was coincidental, but I’d bet my money it wasn’t. The second and third days, it thankfully didn’t trigger nausea, but the head relief was not as pronounced.

I fear that my body has already acclimated to the initial “pain” that the points on the mat produced. While I continue to try trick my body (for example, wearing jeans when I am itchy already that attracts new areas of itchiness, taking my sunglasses off to produce eye squinting that produces other pain), I am beginning to think my body attacks are getting smarter and the tricks are not as effective. But I will continue to use the mat for a month and see what happens. If nothing else, it’s 10-20 minutes of laying on my back on a different surface. So as you may have guessed, my search for an effective headache and/or migraine preventative continues, with the options dwindling rapidly…and for now, I can more than commiserate with Alexander’s terrible, horrible, no good, very bad day.

autonomy | fact or fiction?

Between autoimmune (Sjogren’s, APS, and AT) and autonomic (POTS) and all sorts of conditions in between (migraines, Raynaud’s, neuropathy), I find myself thinking a lot about another auto- word: autonomy. Autonomy, according to the Merriam-Webster Dictionary, is defined as self-directing freedom.

My former self would not have questioned this definition. I used to have lots of autonomy. But now in my autoimmune world, I can’t help but get stuck on this definition of autonomy…my symptoms sure as heck have a lot of freedom. They come and go as they please. They wreak havoc in my body as they please, just as they disappear (particularly when you have a dermatology appointment and are dying to show a live rash) as they please. My freedom, or lack thereof, is obviously not self-directed, it is dictated. Autonomy is not a word that resonates in my autoimmune world despite the common auto- prefix.

Having had the privilege of leading an autonomous life and now experiencing anything but, has had me fixated on puns. I find puns bridging the gap between fact and fiction – and moreover, providing the often sought after comic relief that I find myself yearning for during and after an especially hellish migraine and/or spell of symptoms. So on that note, allow me to share a few medical puns:

  • “This year’s flu is going viral.”
  • “URINE: opposite of ‘you’re out.’”
  • “Statistically…. 9 out of 10 injections are in vein.”
  • “I don’t find health-related puns funny anymore since I started suffering from an irony deficiency.”

Despite what the last pun says, I will always find the humor in health-related puns. After all, humor is one of my sanity coping mechanisms in my autoimmune/nomic world where autonomy is not self-directed freedom, but instead symptom dictated free-for-all!

single sick female (ssf) seeking a divorce

Yes, I’d like a divorce. From my body. ‎I am so sick of the constant headaches, the raging migraines, the merry go round of symptoms (that includes but is not limited to dizziness, nausea, tingling in hands and feet, swollen feet, burning hands, swollen tongue, dry mouth, dry eyes, light sensitivity, sound sensitivity, smell sensitivity, muscle weakness, itchy hives, sweating, cognitive impairment, fatigue). I am so over not having control over any of my symptoms, having a life that is not hampered by symptoms or does not revolve around doctor appointments, relying on the support of my family and friends. I am tired of going to doctor appointments (and hearing they just don’t know), of trying new medicines (that end up causing more harm than good), of documenting my symptoms (there is no pattern I swear).

A divorce is no trivial demand. Nor is this meant to make light of those who have gone through actual divorces. But I’m serious, a separation is no longer enough. Separations have been those occasional timeframes of sanity where I can engage in conversation, make it outside my home and/or even enjoy a glass of wine. ‎Lately it’s just not enough. As such, I’m seeking a divorce from my body. I need a real break. A long break.

There are always lots of details to work out in divorces. I don’t want custody of my symptoms, my body is fully entitled to those. I seek no monetary support either. So as far as I can tell this divorce wouldn’t be messy. A clean break from my body. Where my body doesn’t attack itself. So obviously I can’t divorce my body, but I sure can dream and continue to make light of my single sick situation. ‎#sickbutstillsassy

medic alert | buying peace of mind

It took years, but I finally appeased my family at the end of December 2016 when I ordered a medic alert bracelet that I have not taken off since receiving it in the mail. I’m not joking when I say years…they bugged me about getting a bracelet in 2014 when my medical journey started, their bugging became more incessant in 2015 when I was put on blood thinners, and increasingly so in 2016. I think I finally understood the concern after facing my immortality in April/May of 2016. Yet it still took months before I actually placed the order…

I’m not sure what was so daunting about checking this item off my to do list. Was it the concept of feeling tagged? I’m a private person after all, plus I’m not really a bracelet wearer. Or was it a feeling of being overwhelmed, by choosing a product and/or of what to write on the product? After all, there are so many bracelets and other items to choose from. Furthermore, just like on Twitter, there is a character limit for the products (depending on product/size). Looking back, I think it was a combination of all.

I first tackled what I should convey on the bracelet. What’s the most important should a stranger/medic find me passed out? For that I enlisted the help of my specialist after my initial draft. She suggested that instead of POTS or dysautonomia, I use “autonomic neuropathy” and that instead of blood thinners I actually list the two blood thinners that I am on. She also agreed that I list that I have a sulfa drug allergy. The rest were details that were not as important in a life/death situation. So that became the basis of what I would work with.

The next step was actually going online to see what products the Medic Alert Foundation (https://www.medicalert.org/) was selling. I wanted a simple, discreet, and cheap bracelet. From there I was able to select one and play with the wording of the information I wanted conveyed (which did take a couple of hours, as I did not entrust their experts to come up with text).

I finally submitted my order. And two weeks later my bracelet arrived. It states “On Plavix and Eliquis. Have autonomic neuropathy. Have sulfa allergy.” Then it has an ID number. Along with a 1-800 to call. With this 1-800, a first responder can call 24 hours and get my record pulled up. The most genius part of it all, is that I was able to input all the details that I couldn’t fit on the bracelet online. So if/when a first responder calls, he/she would learn that I have APS, POTS, Sjogren’s, AT, and the continued list of diagnoses. And it shows where my doctors are. Yes seriously. This to me is the best electronic record out there – it may not have history of my labs or consult notes – but it has my diagnoses, emergency contacts, and all of my doctor information. And can be accessed from anywhere, anytime, even if I am not conscious.

While the Medic Alert Foundation has evolved over the years and now requires annual membership fees (that is intended to cover the cost of the upkeep of the online record; they have two levels of membership), ironically my parents had purchased me a bracelet when I was a kid when I was diagnosed with the sulfa drug allergy. With that purchase decades ago, I was grandfathered in and so I don’t have to pay an annual fee – I just had to pay for the bracelet and then update my record online. My record still had my sulfa allergy and my pediatrician from my childhood – of course an electronic record didn’t exist back then but it was inputted when they went electronic and it brought back fond memories of my pediatrician, well in as much as any medical memory can for me. It was an incredible, ironic gift that not even my parents were aware of.

This concept has had me thinking: what if fellow patients who often end up in the ER had a medic alert ID #, would that enable swifter service given a credible record? I don’t know, perhaps it’s wishful thinking on my part. But a gal can dream, right?! While I am not being paid to endorse this product, the concept actually resonates with me and I think that patients should think about purchasing their own medic alert bracelet (but I understand that money doesn’t grow on trees either). In the interim, I no longer have my family nagging me, finally knocked off an item on my to do list, faced the symbolism of a medic alert bracelet (and the bracelet hasn’t even caused hives or a rash!), and received a lifetime gift of peace of mind that I was unaware of.

a new “headache”

According to the Merriam-Webster Dictionary, a headache is defined as 1: pain in the head and 2: a vexatious or baffling situation or problem‎. If you’ve been following my journey, both headaches and migraines have been an issue for me. And lately my head has been raging out of control, both in terms of headaches AND migraines.

But this post will not be covering my headaches as defined in #1, instead a story as related to #2. ‎For the first time in a while I have a new “headache” to contend with, that is wholly unrelated to my health, though undoubtedly the stress is impacting my health. So here it goes…

On a Tuesday just before 5PM I receive a readable voicemail from my building’s management team. I’m informed that my car is parked in the garage very crooked and I have hit another car and need to come move my car now. While reading this my heart starts racing…I’d been up since 3AM with a migraine that day and was pumped with Maxalt and hadn’t left my bed let alone home. Not to mention I hadn’t touched my car in over a week.

I enlisted the moral (and physical since I hadn’t been upright all day) support of a friend to come over to go with me to see what’s happened to my car (I can’t thank you enough, dear friend!). It was obvious to both of us there was no way in hell I could have parked that crookedly if I’d even tried and that my left side of my bumper had been hit – pushing my car into the car on the right. ‎In those few minutes of awe and confusion it was clear to us my car was a victim of a hit and run.

We went down to the leasing office to show them photos and ask how I could be accused of hitting anyone. I will not go into details, suffice to say they clearly didn’t “investigate” and were clueless and rude all the while damaging my name and reputation. ‎They were quick to inform me now that they couldn’t get involved. So I called the non-emergency police line.

Amazingly 45 minutes later an officer arrived. He took one look and confirmed what I had thought: my car was a victim of a hit and run. So while he processed my information (along with the car’s to my right), I hung out in the back seat trying to process the situation (after we’d taken photos of the damage – thankfully he had a good flashlight). I also knew that my car needed to be moved because the car next to me could not get out otherwise. Unfortunately the cop couldn’t move it for me due to liability – but he was extremely patient as I gathered my head and wits. I wanted him to witness it being moved without further damage. (And again I re-enlisted my moral support as a second witness.) As we (by that, I mean him) were coming up with a strategy of wheel turns, he noticed a note on my window. ‎To some relief, the person who hit my car (well sent it flying a few feet) left her name and number. I called her with the officer present and fortunately she arrived a few minutes later. He collected information from her. He then had each of us fill out an Accident Information Exchange form. She was apologetic – as was I as I had called the police since no one had seen the note. All I know is she hit my car at 4:45AM on her way to work. (I still can’t believe no one didn’t report my “crooked” car until almost 5PM.) I still don’t know how she did it, but I felt bad that the cop had to cite her. Silly I know, that I left feeling awful for her. What can I say, even being the victim, my heart still felt for her.

The next day, the reality that my car was smashed set in as I called my insurance agent to report what occurred. It also soon became clear that I would have to deal with finding a body shop (most don’t have openings for over a month – now I think I understand why insurance rates are so high if there are so many damaged cars!) and coordinating a car rental. I lucked out that my insurance agent requested an onsite adjuster to come and examine my car as it had “flown” a few feet. This particular piece has been the quickest and easiest part to date. I still fear that there may be frame damage, but for now it is limited to suspected suspension damage, along with the smashed parts (some on the left side, some on the right side, and the tailgate in between).

This drama has shown me that there are people in this world with a moral compass (I can’t thank her enough for owning up to hitting my car), that there are stupid people in this world (I have lost respect for those in my building’s leasing office who accused me and couldn’t even offer an apology after the fact), that there are police who are professional‎ (I was in a disaster state and the officer was courteous and patient), and that even in my autoimmune world I’m still susceptible to the adage that “sh*t happens” (I’ve been so consumed by all my health issues and drama, I suppose I almost forgot what it’s like to face non-health related drama). While this is not a “headache” I expected or anticipated (and I am beyond thankful that I was not hurt if this had been an accident with me in my car), it is one that will eventually get cleared up (it just will take a zen, patient, and letting it go attitude in the interim). If it’s not one headache, it’s evidently another in my world!

giving back

It’s no secret that my contributions to society have greatly been diminished by my illnesses. It’s not been a choice but instead a forced reality in my new autoimmune world. ‎I don’t get to volunteer like I used to, nor is my income where it used to be. But recently, I had a rare occasion to give back.

If you’ve been following my medical journey, you know that all but two of my IVIG infusions took place in the comfort of my own home. While it was at first very overwhelming for me to accept, I adjusted my mindset and at home infusions ended up being much easier than going to/from an infusion center. The best part was my nurse, Haley, who was awesome! We even still keep in touch almost a year since I stopped the IVIG. Besides Haley, another unexpected benefit is that I had medical supplies left over. With IVIG not in my future, I was finally ready to deal with the boxes of leftover supplies.

Much to my amazement the local Red Cross wasn’t interested in unopened/unused supplies…they told me to try calling the local United Way. They couldn’t use them either so they gave me another number of a company to call. Turns out this company accepts donated supplies but then sells them – at a lower cost. This bothered me so I turned to the Internet to do some research on where my medical supplies could be put to good use for free; “projects” like this keep my mind active when my head is not a mess.

I stumbled on an organization called Project C.U.R.E., ironically founded and headquartered in Colorado. It sounded like their mission ‎aligned with my intent so I called and they confirmed that I could drop off the medical supplies. For more info, check them out at: https://projectcure.org. I donated IV kits, syringes, and lots of other stuff. It made me grateful that these items would be put to use somewhere in the globe. ‎While I’m not sure where, I do know they won’t be sold, just used for a good cause. So if you have leftover medical supplies, this organization may be your answer. They have hubs around the U.S. where supplies can be donated (or money or your time as they also have volunteer opportunities). Dropping off the medical supplies at their Denver warehouse with mom the other week gave me hope that I can still find ways to give back to society, even in my autoimmune world. #givingback