Fighting Rare Disease With No Cure
Hi everyone, my name is Stacy Lowrey. I suffer from a rare condition which causes incredible pain. The condition is CRPS/RSD; I have had the disease for five years now. There is no cure, it's now effecting my entire body and I am getting worse. I cannot continue to work due to the debilitating pain and sleep deprivation. Treatment is expensive and has caused us financial hardship. There are some alternative treatments which might offer some relief. With financial help, I will be able to help pay my medical bills and seek these alternative treatments. Any help you give will be greatly appreciated.
I've put a few links above that might be insightful, and there is more information on Google. If you would like to hear my full story, please feel free to contact me.
I cannot thank you enough. <3
First I hope that you all enjoyed a wonderful Holiday and have a great 2016 so far! For me, things were absolutely lovely sans the weather which was awful. But at least for most of December were able to enjoy unseasonably warm temperatures (which is far easier on me). I was also able to enjoy a time of met deductibles and I even met my out of pocket maximum with the pharmacy! After dropping a few thousand dollars in co-payments and deductibles all year, we were shocked to drive up to the pharmacy window and have them hand me my meds for free! I thought my eyes were going to pop out of my head! So that part was very nice and it helped us tremendously as have you all over the course of this year. I do not think we would have made it otherwise.
Though a new year brings hope and promise and new beginnings, unfortunately all the perks I was enjoying with insurance covering everything are now gone. All my deductibles have started over and I tried so hard to make sure all my medications were refilled before the turn of the year, but the insurance wouldn't cover my time-release oxycontin or the morphine until January 3rd. :/ Such is life I suppose.
Health-wise, things have been a bit up and down. I have been working very hard at physical fitness, but the ankle I sprained back in September swells up (as do my hands and my knee) which seems strange to me. It bothers me still and I nor my doctor know for certain if the CRPS has gotten to my ankle or if it's sprained or if there is something wrong with it. My lower back has always given my troubles with my awkward gait but lately it has been unbearable. I had an MRI (on December 29th. Heehee) but other than some arthritis and disk issues, there isn't anything they found remarkable on the scan. I haven't spoken yet to the doctor, but my Nurse Practitioner is recommending physical therapy, so that will be fun. It's hard for the fitness as while I'm in there, the meds and the adrenaline help me through most of it but I pay for it. Yesterday I went to the gym, now today I'm bed bound and hobbling around and was unable to get much sleep. But my mom and my sister stated that I am looking "healthy" so that's good, right? :)
On the sleep front, I have given up completely on sleep medications. I think they caused me more problems in the long run, making me go a little nutty and wiring me until I blacked out from exhaustion. So I've been taking an increased dose of Xanax (at the discretion of my doctor) and a strong muscle relaxer. That with my normal dose of neurontin, oxy time-release and morphine seems to have helped the most. I can eventually get to sleep and though I wake up every two or three hours, I can typically get back to sleep.
Since the pamadronate was a horrible experience, and I am hesitant to try ketomine for my ankle, I have something of a routine. Though I will need knee surgery again, I am trying to push that out as far as humanly possible. And sadly for me (and good for him) my amazing surgeon retired so I have to go through the process of vetting out new orthopedic surgeons that can/will treat me. I've been putting that off too, but if this ankle thing doesn't get better, I may have to suck it up and start looking.
So though being in pain all the time is not a great life, I have a loving and supportive family, a husband who loves me and who is killing himself at work to make sure we remain insured and a great network of friends who care about us.
Unfortunately though because I am unable to work but a little, the weight of the finances is falling on the shoulders of my Mother and my husband. You all have been very generous to me over the course of this year for which I am forever grateful. And I understand that many are suffering from the debt of Christmas, if you are able and willing to help us through the horrors of new deductibles, my family and I would certainly and always be thankful.
Cheers to a (hopefully!) brighter and better 2016!
You know, when putting this fundraiser up, I had it mind to bring singular awareness to this crazy pain disease I have and its subsequent complications and downward spiral and a disease that so few people barely understand and even less have heard of. And due to the overwhelming medical bills, I was encouraged to come here, reach out to other patients who suffer with what I have and to trade notes as well to ask for help when it could be given I can't hardly work anymore and my family is struggling already to help me as much as they possibly can. But I have something else that 8.7 million other adults and 6.8 million children in the U.S.A. alone suffer from that is also difficult to manage and that doesn't drag on you non-stop. It sneaks up on you. It's scary and potentially fatal. (1) And unfortunately, it's something you are born with. So if you got it, you got it. And there is no cure.
Fortunately, it is mostly manageable and most people can live healthy, active lives so long as they follow proper medical protocol and are prepared for emergencies. Unfortunately, it can sneak up on you and snuff you out within minutes. According to the CDC, in 2013, there were 3,630 reported fatalities caused by asthma. I nearly had my ticket punched a year ago. If it wasn't for my sister who threw down what she was doing to race over here after I called her for help, I doubt I'd be sitting here typing about it today. I've had some scares, but nothing like that where my blood pressure tanked and I started seizing and fading in and out of consciousness. We now have instructions on where to find my nebulizer and how to operate it because my poor sister was having to follow my husband's instructions over the phone, and none of us were calm. (I was barely conscious and no help at all.) My sister found it, found the air pressure tube and shoved it in my mouth. Unfortunately, without the meds, but hey, there was air. The paramedics arrived quickly and my husband a minute later; although they couldn't open their own oxygen tank without my husband's tools. They took good care of me otherwise. They had to pump me full of all kinds of steroids and who knows what else in the ambulance, and I had to have around 10 breathing treatments between the ambulance and the hospital. We've tried to be more careful about preventing asthma attacks ever since, but I hate steroid inhalers and I -rarely- get asthma attacks, which is why they tend to take me off guard. My triggers are mostly colds/flu and panic attacks. I'm not allergic to anything, though the when this last attack happened, he wanted me to get retested. I couldn't afford it so I canceled my appointment.
Then three months ago, I went with a friend to exercise and I forgot my inhaler and had an asthma attack. (They do say on the asthma sites to stay active!) I have a nebulizer that a coworker gave to me years ago that has been a literal life saver--that night I tried to stay calm and just make it home and my husband was able to get my breathing back to normal with it. But I was starting to fade and convulse and it was terrifying, but at least I didn't have to go to the hospital.
This past weekend, I got to spend two days with my friends (and 70K other people!) at Dragon*Con, which was alot of fun. But every year since I can remember, me (and many others) come down with what is known officially as "ConCrud"--a mysterious disease that makes you cough, hoarse, and generally feel drained and icky. It took two days to catch up with me, but this year, it was just a nasty sore throat. Then two nights ago, it suddenly dropped into my chest. Within two hours, I was rasping from the inflammation and fluid in my lungs. My husband hooked up the nebulizer and woke me up 5 times for treatments. (I do not even remember the last one.) He slept with his hand over my chest and would wake if I either woke him up with the rasping or woke up him with the silence when I was unable to get air into my lungs at all. Needless to say, we were both exhausted Friday. After the breathing treatments and a few rounds of guaifenesin and pseudoephedrine, my chest cleared along with my breathing and we finally, finally got to sleep around 6am. And because of all the pseudoephedrine, I woke up feeling great! I was fine for most of the day and even went to work for a few hours, but almost the moment I got home, my symptoms started flaring up. I don't know if it was just because the medicine was wearing off, or if it was due to the high humidity factor we have in the house which has increased from the recent downpours, or if it's just because it was evening time, or maybe a reason I haven't thought of. (Though I read a study wear asthma attacks are more likely to flare up at night for reasons unknown.) (2) Regardless, my chest started filling up with icky fluid and became tight. We went through the same routine as the night before with the meds, inhalers, and nebulizer, but my airway become more and more constricted. At around 6:30am, I wasn't getting much air in at all so I woke my poor exhausted husband from deep sleep and told him to call 911 before I started to lose consciousness. He jumped and leaped into immediate action though he was exhausted and sleep addled, and though he could tell I was not getting enough air to my brain because I started to behave rather oddly soon after, he managed to somewhat get me to comply to the 911 operator's instructions.
The ambulance arrived in 12-15 minutes. They missed the house and my poor husband had to leave me to go wave them down then move the car so the ambulance could pull in. I'm a little fuzzy on the details at this point. I remember the EMT's name who spent the most time was Matt, and I grabbed his hand before he left my room and thanked him when I was coherent enough to do so. In the ambulance, they tanked my IV up with steroids and potassium; they gave me albuterol but my O2 levels were in the low 80s, so they were definitely concerned and my husband was trying to get them to take me to North Fulton who took very good care of me last time. These guys did not pump as much drugs into me and wanted to get me to the closest hospital. There was a discussion between Kennestone and Northside Cherokee in Canton. The latter won due to the fact it was closer and despite the girl's insistence on Kennestone where we've had some bad experiences with multiple family members. In the ambulance, after a time beneath a mask of albuterol mask which didn't help much, they switched me interestingly enough to a CPAP mask. -That- I guess with all the steroids and whatever else they pumped in my IV started getting oxygen into me. (I know I'm not a pro only having done this 2 times--and may this time be the last--but I was really surprised. Apparently, they have CPAP machines specifically for asthma which provides higher concentrate of 02. I think. They told me it's different from the CPAPs given to sleep apnea patients). Whatever it was, the positive force of sweet air was actually getting into my lungs and I asked if we could just stay home. Unfortunately, they made me go to the hospital. In route, I had that awesome mask on the whole time and by the time I got to the hospital, my 02 stats had gone up, though my BP diastolic took some time to go down, but I was in pain and they wouldn't let me take my pain meds until the nurses switched out their shift. (Tired nurses were cranky and wanted to go home. I get that--the morning shift nurse was awesome and let me take my meds after asking the doctor if it was okay. We talked and pitied the cranky nurses as she wheeled me out. Her name was Mel. ++ to Mel and Matt and Bob++++)
I saw the struggles my brother had with asthma in our old house (before it burnt to the ground). I never knew even I had it until I was 22 when my Doctor of just about half my life or more (Dr. R. Allen Mills who is amazing btw) figured it out after figuring my bi-to-tri-annual occurrences of bronchitis/respiratory infections were expressions of my asthma. I would start out with a cold that would travel into my chest which would linger for ever and cause breathing distress. I would then I would have to go in for breathing treatments and be prescribed antibiotics, steroids and a multitude of inhalers--all treatments that I detested. It was called it "croup" when I was a kid, which is a general term for a barking cough, wheezing, laryngitis, etc. Dr. Mills sent me off to a pulmonary specialist where I proceeded to fail the breathing measurement tests miserably and reveal that I live in state of lower oxygen levels in the upper 70something percentile. One doctor told me that because of this, I've adapted to extracting more oxygen from the air than other people. Neat, huh? Well, I was diagnosed officially with asthma and they tried to put me on different daily inhalers over the years and I have hated every single one. I think it was the nurse that told me how her inhaler (Flovent I -think?-) gave her "thrush"--a type of fungal/aka YEAST infection IN HER THROAT. That's always stuck in my head and I hate the taking the fast-acting inhaler as it is. The other stuff freaking terrifies me.
I don't know what to do. I don't want to cause my husband to go through this nightmare again and maybe certain lifestyle changes can help that. But I seem to react very sensitively to certain medications, and that may be due to who I am naturally or the cocktail of biochemestry that my body has circulated through me over the course of the past six years since I developed CRPS--or dating back further to 26 when I developed shingles and PHN.
Anyway, regardless of how I react, I hope that those who have it or may have possible symptoms that may lead to a firm diagnosis check out the sites I've referenced below. There are a number of other sources that I read through and many other useful medication--none of which are a substitute for a specialist with the right equipment who can give you a firm answer. And for those of you who live around those with asthma, it is vital to have a proper emergency protocol in place. Mine is emailed to all my family and magnetized to my fridge. It doesn't happen often, but we learned the hard way by me nearly checking out of this world about how important that system is. Educating yourself and those around you is just as important as having the medicine and tools you need, even if that is just a working cell phone, but likely like any self defense situation, is figuring out your triggers, what works, and how to avoid the critical emergency in the first place.
Asthma has no cure, like so many things, and death can be prevented if you or those around you move fast, and that latter point is absolutely vital.
And btw, ambulance rides and hospital stays are stupidly expensive. They will see you and treat you here regardless if you can pay them, but my last ambulance ride was a grand and my last visit for a freaking nausea pill at Northside Cherokee was nearly $400. Preventative measures seem to me the smartest way to go. Now, I need to get over the distaste and the fear and the dislike and get that through my thick skull--because my doctors have been trying to get me to take the daily inhaler for 12 years now.
What can I say. For somewhat with a 4.0 in the pre-med field and who has worked for 14 years in the medical field, we really do make the worst patients.
I hope you found this helpful and informative. And please know we are struggling so badly due to my medical problems and are desperately in need of help. If you can give it, please lend a hand. We already have two items in pawn. We're about to have to add another. It pains me so badly to plead but we're in dire straights. It kills me because if I could work more I would to help us I can't at the moment do more than I am able, which isn't much. We need help. If you could help us spread the word or even help in small amounts, we would be so grateful.
If you have questions or would like to trade stories, trade secrets you have learned and swap notes, I am very open to both sharing and learning. My email is firstname.lastname@example.org
Keep well and happy!
Reference 1) http://www.cdc.gov/nchs/fastats/asthma.htm
Reference 2) http://thorax.bmj.com/content/58/1/81.full