In June of 2017, my GI tract forced me to stop lyme treatment far too early. It was an agonizing two and a half years later before I was finally given the okay to start again in January 2020.. We had to wait until I was receiving enough calories and nutrition, which I now get from my TPN (IV nutrition), so I could regain my weight, strengthen my body, and safely treat my Lyme Disease. As frustrating as that long wait was, since January I have completed ten treatment cycles focusing heavily on the co-infection babesia which is actually not a bacteria but a cousin of malaria, technically classified as a parasite in the way it infects the body. Babesia is nasty and can do a lot of damage, and the plan behind treating this infection now is that it will be easier on my body and immune system when I start IV antibiotics again to kill the other infections down the road. Another benefit to treating babesia now means it will reduce the length of time I need to be on those IVs. When I started treatment at the Jemsek clinic in 2016, we treated with IV antibiotics and babesia medications. Now however, my body is more delicate so we have to take things slowly and carefully but are still steadily bringing my body closer and closer toward true healing. Whatever and however that may look like. Since starting in January, I have been using the same pulsing schedule with weeks/days on and off treatment. Everything is either already liquid or crushed to be pushed through my feeding tube so my body can absorb the medication and nutrients. In May we began busting biofilms, which are essentially physical barriers constructed by these infections to hide from the immune system and flourish. Other than my normal herxing symptoms (increased body pain, exhaustion, weakness, headaches, neurological craziness, etc), the hardest part of this has been my GI system. Like always it seems. Because of dangerous interactions, I had to stop taking my GI motility medication in order to start lyme treatment, and in addition to the treatment itself (and certainly other things I have yet to figure out), my acid reflux, regurgitation, nausea, and intestinal cramping have increased massively to almost unbearable levels at times. These symptoms flare up the worst during the treatment weeks, but are continuing to worsen even off treatment as time goes by. Currently I am working with my GI doctor to try and manage these symptoms through IV antacids and anti-nausea meds amongst other smaller adjustments but at some point meds might not be enough. No need to get ahead of myself here, but it is a very serious problem on many levels and I’m so thankful for my current GI doctor and her willingness to help. Treatment for Lyme Disease is extremely horrible, both physically and mentally, and it would be easy to stop trying so hard, to just give up. But I refuse. I have come this far, gone through so many horrors, learned so many things, met so many amazing people, to stop now. I haven’t met my goal and won’t stop until I do. However these past six months have been extremely hard, and I wouldn’t have made it without the support of my friends, siblings, and Jesus.
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Exactly one year ago today, I began receiving enough nourishment for the first time in nearly two years via TPN, or Total Parenteral Nutrition, also known as IV nutrition. I had lost a total of 40 lbs over the past few years, but although I gained a little from my feeding tube placed in 2017, we very quickly found it wasn’t a solution. Although I tried motility medication to help my gastroparesis and slow intestines, it also failed to help and I was slowly starving to death. In the two months before starting TPN I lost nearly 20 lbs; it was truly terrifying. After weeks of working with my doctor and other medical professionals, I was finally admitted to the hospital May 1, 2019 where I could be monitored as I began TPN to be sure my body was able to cope with and process nutrition safely again because it had been without for so long. The next morning on May 2nd, I had a new (my third) central line placed and that night the first bag of my new ‘food’ was hung. After seven days of monitoring and much need hydration I was released from the hospital to begin TPN at home on my own. (Read more here.) The hardest part of my adjustment physically to the IV nutrition came when after I was discharged and had a new schedule where I was running my TPN over 16 hours each day, starting in the evening and finishing the next morning. It took my team and I quite some time to learn how and in what way my body was so sensitive to the TPN and why I was so physically exhausted, weak, and just felt downright awful. After several weeks and an added hour to gently slow my infusion its stop, I began feeling a million times better and by July had gained a solid 15 lbs. My energy, mental clarity, and strength were the best they’d been in years and after seeing my lyme specialist in DC that same month we decided I would soon be ready to restart treatment after years of being forced to wait because of my GI issues. Unfortunately that had to be put on hold another six months due to a severe feeding tube and intestinal infection that led to sepsis in October. Being on TPN, or IV nutrition, puts you at high risk for a blood infection, whether it be bacterial or fungal. Add to that my weak and suppressed immune system and things aren’t working well in my favor. From the end of July until the beginning of October my body attempted to fight the gut infection (read more here.) while I tried to get treatment from multiple doctors none of whom believed me. I ended up in the hospital twice with sepsis in October, mainly because they weren’t thorough the first time around. But after more than thirty days of IV antibiotics, the infection in my blood and intestines officially gone, and my TPN calories increased the next two months were some of the best I can remember. November and December brought with them an indescribable gift of improved health that didn’t do my memory of such times justice. Of course I was still sick, but my energy, physical strength, mental clarity and speed, along with my motivation were the best they had been in years. God saved my life three times in 2019 AND gave me two miracle months of the most physical and mental freedom I’ve experienced in so very long. At the end of January I was able to restart treatment for my Lyme Disease after a long two and a half year wait. The reason I had to wait? My body was received next to no nutrition and not nearly enough calories. Enter TPN, and although it took longer than anticipated, I am finally able to treat what has been my biggest underlying problem since high school: lyme. Mid-February I woke in the night with a sudden fever of 103 degrees F that lessened throughout the next day but spiked back up again the next night. So once again mom and I said hello to the ER at the lovely hour of 2 AM. More details of this fifteen day stay will come soon, but after a scary and miserable three days they discovered I had a yeast infection in my blood. Essentially the fungal version of sepsis, known as fungemia. I had to go without my TPN for twelve days and somehow survived off popsicles, apple juice, and a tiny amount of feeds through my J tube. By discharge I had lost over ten pounds. It has taken many weeks to get my TPN schedule back to my normal 14 hrs/day and my calories back up to where there were before I was hospitalized. It is crazy what a yeast infection and nearly two weeks without nutrition will do to you. But I made it. One year and three blood infections later here I am, thriving and conquering the way I know best: Going through the suffering of treatment to kill the lyme bacteria and its friends so I can truly begin to heal. I now spend 3+ hours each day simply performing medical tasks like prepping my TPN, mixing and taking meds, and doing breathing treatments. I have to run my TPN during the day because my body doesn’t like to sleep at night if I infuse it then. (I have one of the most temperamental bodies. Goodness gracious.) I also run a liter of fluids every night along with the two liters of TPN that infused over 14 hours each and every day. It’s a difficult schedule to keep up because I have to be awake for all of it aside from potential naps but IV nutrition is truly one of the best things that was ever gifted to me and I am so blessed to have found an incredible company who provides everything I need and then some. I also have an amazing nurse and one of the most incredible things? It is ALL covered by my insurance. God is so good folks.
The title of this post is no exaggeration. Everything started in July when I began having symptoms of yet another flare-up of my seemingly endless feeding tube infection. I saw three Infectious Diseases specialists over the next couple months, with none of them taking me seriously. I began experiencing new, severe symptoms that could supposedly be caused by one of my other multiple illnesses. This is one of the most frustrating and dangerous aspects of being a complex patient. Doctors start passing you around to other specialists; in my case insisting that my GI symptoms were from caused by my GI motility issues. Remember how a doctor is supposed to listen to the patient because as a medical professional they don’t know what our “normal” is and have no way of understanding what is going on other than listening to us? Yeah, that rarely happens anymore and in this case not at all. By the beginning of September (when I saw my third and last Infectious Diseases specialist) these were my main symptoms: Abdominal pain everywhere to the point where it hurt to even touch my belly. An ton of abnormal bloating and swelling in my abdomen. Sharp, slicing pain in my stoma (hole where feeding tube enters the body). Near daily fevers and significantly increased fatigue and weakness. No appetite, I had to stop putting anything aside from meds through my tube because everything hurt so badly. Terrible nausea and increased acid reflux. So yep, not a fun time. What could we do? NOTHING. My body wasn’t giving the doctors what they needed to believe me (my suppressed immune system making things much worse) so plan “Make Anna Sicker” commenced. We were desperate. No one in the medical field, aside from my incredible nurse, believed me, so I simply had to wait things out until they got better (which wasn’t going to happen) or became sick enough that the ER would take me seriously. I endured nearly a month of mental and physical torture, wondering if I should push myself to weaken my body or simply rest and hope things continued to decline. I needed to become really sick as soon as possible. It was such a messed up mindset and something that should not have needed to happen. By the last week in September I was essentially nonfunctional. I had woken up in the night with the chills early that week but not a single fever after that for ten days. The morning of Wednesday, October 2nd I had another episode of bad chills and felt so sick in such a bizarre way that I couldn’t explain if I tried. Mom took one look at me and knew it was time for the hospital. My vitals at intake were over 100* F and a HR of 140-150. Those things alone had them wheeling me back almost right away, and after we spoke with a PA and some nurses took loads of blood and hooked me up to several liters of fluids (used to decrease the heart rate) I was taken to the trauma/high observation area of the ER. We spoke to multiple doctors and nurses and I was hooked up to a twelve-lead heart monitor. Shortly after I had settled in my chills started again, this time worse than ever. They were honestly what you would call rigors, where my whole body was shaking beyond control, my teeth were chattering, my muscles were very tense and painful, and I was oh so very cold. This resulted in a dose of Tylenol and horrifyingly removing one of my blankets because apparently I had a fever of 101* F. To summarize the rest of the day, I was soon hooked up to IV magnesium and given a dose of phosphorus because my electrolytes were not in a good place. The fluids hadn’t helped lower my heart rate and it wasn’t until after the magnesium that we began noticing improvement. Which meant approximately seven hours of a HR in the 140-160s. It was absolutely exhausting. Around ten or eleven that night I was taken up to my room in the Progressive Medical unit, which is essentially a step down from the ICU. I spent the entire six days of this admission on that floor connected to a heart monitor. It was difficult but necessary. By 4am Thursday morning I was being hooked up to a crazy strong IV antibiotic because my blood cultures had come back positive, which meant I had a blood infection, which is also called sepsis. It is extremely dangerous and can easily be deadly if not caught soon enough. One of the most difficult things with sepsis treatment - at least for me - was having to stop my TPN (IV nutrition) for four days. It is absolutely horrible on top of all the other things I was dealing with. Getting your nutrition through your veins means you don't have any stores, no backup, anywhere in your body. But in order to kill the bacteria you have to stop giving them their ‘food’, which in this case was my TPN because all that yummy goodness goes straight into my blood where the infection was. Honestly I was so sick I probably slept at least two-thirds of my admission. Let’s just say my body was dealing with a lot. I was sent sent home with two weeks of IV antibiotics and the hope of feeling better every day. The first night I was home I had another episode of severe chills and a fever, and most of the next day I had a fever over 100 degrees as well. After that though things seemed to be improving. By the end of the week nearly all my miserable GI symptoms were gone and I was back to baseline or better. My energy level and weakness were still an issue though and it seemed as though my body was taking forever to recover. However it did make sense because of everything I had dealt with the past few months so I didn’t think much of it. Four days after my last dose of antibiotics, in the middle of the night on Thursday, October 28th, I woke up with severe chills that turned into a 103* F fever. (I also threw up which basically never happens.) I did NOT want to go to the ER again; I had IV fluids and Tylenol at home (both of which I used) and I didn’t see what else they could do. It took quite a few hours for my fever to break, even with the Tylenol, so I guess that should have been a red flag. We decided that if and when this happened again mom and I would go straight to the ER. The very next night I woke up to the very same symptoms: chills that turn into a fever and a heart rate that just keeps climbing. Mom quite literally dragged my chattering self to the hospital where my intake vitals showed my fever was over 102* F and my HR steadily in the 160s. This time they didn’t hesitate and simply wheeled me right back to the same area I had been just a few weeks before. I was so sick I could hardly function, but thankfully they had me on two antibiotics and fluids within the hour. I also had a ton more blood drawn for testing and was again hooked up to the twelve-lead heart monitor. This time the fluids did calm my HR relatively quickly and with that and the Tylenol I was feeling “better” sooner than expected. It took much longer this time before I was taken up to my room (13 hours) on the same unit I stayed in during my last admission. A bit of déjà vu right there... I was on around the clock doses of the same powerful antibiotic since arriving there because of my recent sepsis episode so it wasn’t as worrisome the next couple days while we waited for my blood results to come back. This time the lab did things right and my doctors discovered there were bacteria in my central line (central venous catheter) and it had to be removed and replaced with with one that was squeaky clean. I had it removed Monday morning and new blood cultures drawn shortly after. Those had to come back clear (meaning no bacteria at all) for 48 hours before they would put in a new central line. Tuesday I was moved down to the regular floor, and Thursday my line was placed by the remarkable IR team (they are probably my favorite medical people) and I restarted TPN that night. I had been without my “food” for six days. Friday, November 1st I was officially discharged after experiencing two bouts of sepsis in one month. I finished my IV antibiotics at home twelve days later and since then have felt better than I can remember in a verryy long time. My energy is the highest and most consistent it's been in years, my brain is the clearest it’s been in ages, and I gained back the weight I lost from this infection and then some. According to my PFTs (pulmonary function tests) last month, my lungs are the best they’ve likely been since the beginning of college. I believe several things contributed to this culmination of awesomeness: Firstly my IV nutrition (TPN). I have gained thirty pounds since last spring which has greatly contributed to my lung improvement and overall strength and energy. Treating my sepsis put a stop to all the infection and out of control bacteria nonsense my intestines have been dealing with, which has majorly helped my GI pain and I’m sure lightened the load on my immune system. Also, I believe my more than thirty days of intense IV antibiotic therapy killed off some of the lyme bacteria, which would absolutely help. Needless to say, I am bizarrely kind of thankful for October’s horrendous experience. Although I don’t know everything 2020 will bring, I do know what we will be focusing on, what I will be fighting again, and what I am looking forward to: Getting back into lyme treatment. It has been over two and a half years since I had to stop and although it will make me very sick again I am excited because this is it. This is the biggest underlying reasons for all my health struggles and I am finally in a place where I can do treatment again. It won’t be simple and it won’t be easy, but God saved my life three times this past year, I know he’ll get me through this too. In the meantime I plan to enjoy every day in this beautiful eye of the storm where my health is not the biggest thing on my mind each day. Thank you all so very much, I can’t wait for this next year! As I write this mom and I are driving home from Washington, DC where I had an appointment with my lyme specialist yesterday. It had been over two years since seeing them at the clinic so this was a much needed appointment. For so long our focus has been on my GI system: What is causing this, trying ways to help, desperately working to get me enough nutrition. Although we are still working to figure out and help my crazy GI tract (in fact I am seeing two GI doctors the end of this month), now that I am getting adequate nutrition and calories I feel I am able to breathe and think about other battles my body is still facing. Lyme Disease being a huge, underlying part of the problem. It has been difficult to think about though, because treatment is so very expensive and of course not covered by insurance. Putting myself back in the mindset of treating lyme has been tricky in some ways because it brings up so many memories, but exciting as well because it is now possible with me being on TPN. Since the beginning of May I have gained over 15 pounds; something that is so exciting and a bit hard to comprehend. Even when I was nearly this weight last fall I didn’t look this ‘good’. I’m getting not only carbs and vitamins, but also fats and proteins – which I was not getting before. I don’t look or feel like a skeleton anymore, my mind is clearer, and I have gained back some of my strength. (Which is not saying much because I have weakness due to lyme, but I’ll take it!) My appointment at the Jemsek Clinic Wednesday went very well. I just love them; their knowledge and how they truly care and work to figure out how to help. I saw the best PA there, one I have seen for years – her and Dr J are the only ones I see nowadays. At the end of the visit she assured me I am not to complex or sick or crazy that they cannot help and it certainly doesn’t deter or discourage them from finding the right treatments to help my body and kill these nasty bugs. She simply said that with me an already complex situation is made much more complex, meaning they have to go about things delicately. It is an incredible feeling to hear these things and feel the validation about the horrors I’ve been dealing with. When I do start lyme treatment again I will be doing IV antibiotics. My PA knows that firstly, my neurological symptoms are to the point where even someone with a working GI tract would need IVs. (Using IVs gives us an incredibly stronger ability to kill the bacteria in the nervous system) Secondly, the issue of absorption using oral antibiotics, even putting them through my tube, would likely be ineffective, irregularly effective, or not very effective. This is because we simply don’t know the extent of my absorption abilities and how consistent they are. I am honestly not surprised and am ready to be terribly sick from the treatment and herxing. (Link info) Sounds crazy doesn’t it? But that means progress is being made and I am back to killing (literally) the biggest monster attacking my body. I have a follow-up phone consult in six weeks and we will go from there regarding when we’d start treatment. It will also depend on finances because of you don’t have the money… that’s just reality. For those of you who don’t know, I was treated by Dr J for over a year from 2016-2017 and 10 of those months were with IV antibiotics. Although I am still very sick there are many things that have gotten better. I am not the same person anymore, I have more of my mind working, my personality, and other little things. It really just takes time and dedication. A few other things to note: My lungs are in the best place they’ve been in years. My pulmonologist is so happy. It’s taking seven meds (a combination of tablets, neulized, and IV meds) but oh so worth it. I don’t know what they will look like during treatment but for now I am soaking up these months of easy breathing. Regarding my headaches, through my neurologist I have been diagnosed with occipital neurolagia and actual migraine. There are many misconceptions about migraines. It is actually a genetic, neurological disorder, not a certain level of pain. In fact, some headaches can be worse than a migraine. Of course Anna over here has multiple headache disorders, which isn’t surprising given how dramatic my body insists to be. I also get excruciating neck pain which no one can figure out. My lyme specialist is prescribing me something that may help the pain, and I will keep you posted on that front. I still have Lyme Disease. I think many of us, or maybe just me, have temporarily forgotten how much it impacts my health. A couple weeks after stating TPN I remember telling mom and I remembered I do still have lyme. Kind of hilarious but it does make sense given how much my GI and nutrition issues have consumed my life. Suffice to say, we are finally able to move forward toward treatment which will lead to healing. There is no start date, no end date, but right now that doesn’t matter to me. I’m taking steps forward for the first time in years. Today marks one month on Total Parenteral Nutrition, also known as TPN or IV nutrition. And guess what?! I gained six pounds!!! (Although we believe a couple of those were necessary water weight because I was so dehydrated.) Guys, it is so amazing to see THREE DIGITS on the scale!! I am beyond thankful and blessed. I was admitted to the hospital on May 1st and discharged May 7th. It was a longer stay than I would have preferred, but in doing so we knew it was safe for me to go home and do TPN there. Unfortunately we weren't able to place my central venous catheter (Central Line or Tunneled PICC) until Thursday morning, which was frustrating but gave me the opportunity to get IV fluids overnight and interact with the BEST nurse I've ever had. God has truly had his hand in every step of this journey. Starting the actual TPN was a challenge for my body. It took time to adjust and process the nutrition without making me sick. The first few nights I became very weak, fatigued, shaky, and nauseous after they started a new bag of TPN. Even though I was on it 24/7, they didn't mix the lipids with the dextrose/amino acid bag so it hit me much harder because the lipids were more concentrated. They only ran for five hours instead of the sixteen hours I am running them at home. I started feeling a big difference pretty quickly during the day though, which was especially thanks to the ridiculously amazing amount of fluids they were giving me in addition to the TPN. I told my attending doctor that I was going to the bathroom so often but absolutely loved it haha. It is amazing what a little (or a lot) of water can do for the body. We monitored my labs, blood sugar, and sorted my release home with my DME so my supplies and TPN would be delivered the same day I went home. My DME (Durable Medical Equipment) is AMAZING. The way I found out and was connected with them is incredible and only something God could have done. They have a nurse, dietician, pharmacists, and a patient advocate for me. I can still hardly believe it. The dedication and genuine care they give their consumers is above and beyond anything I could have imagined. It is because of them that I have my nutrition. Their coordinator fought for me so hard, day after day after day. God is so good to me. After some hiccups (Meaning me getting very sick on the new schedule) we sorted out a good regimen for me that seems to be working quite well. I run my TPN for sixteen hours a day, and my tube feeds 24/7. Even though they run crazy slow, it is still nutrition and very important to keep my gut moving as much as possible. It definitely adds a lot more time and things to manage in my 'medical schedule', but I am adapting and making it work. Right now I spend about an hour each morning on medicalness (unhooking from TPN, setting up feeds for the day, nebulizing, taking meds, etc), about another hour throughout the day taking meds and setting up my TPN, then at least another hour at night taking meds and nebulizing. And those are just the daily necessities, not including phone calls, detox baths, hours spent in horrible pain, etc. But it is worth it. One hundred percent.
I want to thank each one of you for your prayers, encouragement, messages, visits, and love. I could not have made it here without you. I feel like I've come out of a deep dark hole of weakness and death and am now free and alive and can breathe again. I still have a LONG way to go in this fight for my health, but right now am simply thankful to be alive. I am thankful for the ability to begin healing my body. And I am thankful for my God who never left my side.
Seems dramatic, doesn’t it, the title of this post? Unfortunately it is completely accurate. As you surely know by now, my GI system is ridiculously dramatic. I will spare you the bizarre details of its steady decline over the summer and through the fall, but since about December of 2018 that decline has sped up. A lot. At the end of November I started a six-week stint off my feeding tube feeds. That amount of time was not scheduled by any means, just as days and weeks in the prior to that hadn’t been. But I knew I needed a significant intervention to clear my system because I was extremely backed up, bloated, and in pain. It took a couple weeks and loads of laxatives to get me feeling ‘okay’ again. And as the days went by I felt so much better in a way I can’t really describe. That is how I ended up off my feeds for that long— I felt good, better than I had in quite a while GI-wise. But of course my body couldn’t sustain itself like that, so when the ‘lack of nutrients/calories’ symptoms got bad we knew I had to start my feeds again. And I did. For about a month... Once again lots of details there that are not necessary so we will skip ahead to the month of March. The month where a massive decline began that continues even to this day. I spent February off my feeds once again to clear out after trying to get my feeds to their previous rate of 10mL/hr. When I decide to stop my feeds it is based off several things, not just me feeling yucky. I get to the point where so much pressure has built up in my GI tract that the extension line to my feeds keeps popping out of where it is inserted into my tube. Constantly coming out, I literally can’t keep it in, even with tape, and barely with my own hands. Another determining factor in stopping my feeds is the absolutely ridiculous amount of gas pain I am in and how constant it is. Then simply the ability to get my colon working- how frequently am I able to go? How many laxatives do I have to take to get me there? How many of those are the one that makes me really sick? Those things. Those things are the reason I have to continually stop my feeds to get my body under control so I can start again. A super not surprising side note: I ended up having a nasty infection in my feeding tube that we finally discovered in March which resulted in a seven-day course of IV antibiotics and a squeaky clean new J tube. One day toward the end of February I decided to go on a mostly liquid diet. (Meaning no rice since that’s the only solid food I was eating.) It was hard at first but I started seeing improvements very quickly. I did allow myself to have rice a few times a week but other than that it was juice and baby food. You guys. I felt amazing! My pain was the lowest it had been in I don’t know how long, and I didn’t need as many laxatives to get things moving. I did want to restart my feeds though so after a few weeks of that I hooked up and began at 3mL/hr, determined to get them back up to 10mL. That did not happen. After many ups and downs I finally got to 4mL/hr 24/7 about five weeks later. That is ridiculously slow. My nurse was shocked, her manager was shocked, I spoke to a dietician and she was shocked, my local GI was at a complete loss. None of them had ever seen or heard of someone who could only tolerate such an extremely low dose of feeds. To put it into perspective: My doctor wanted me at 45mL/hr, which is actually on the low end of normal. So yep, my body continues to be the specially odd thing that it is. After some testing I switched my rice out entirely for a baked potato (insides only of course). This helped even more with my gas and pain. I began unintentionally drinking less juice and eating less baby food as well because I seriously felt better. I never knew how much pain eating food had been causing me. At this point you may be thinking that I really shouldn’t stop eating just because it hurts. Trust me, I have thought that more times than I can count. But the other thing about these past couple months is my motility has quickly been getting worse. I can almost feel it, physically. It’s a strange thing and I don’t even understand it fully but it’s true. I get full SO easily now and it takes a lot longer for my stomach to have room in it again. I now have to take ALL my meds through my tube, even the liquids, because they simply can’t make it through my stomach at all or fast enough to do their job when needed. Putting them through my tube has made an incredible difference. That in and of itself shows how much worse my gastroparesis is. (Stomach motility specifically) In the past six weeks I have lost over 13 pounds, and 3 pounds the two months before that. I am at lowest weight I’ve ever been (pictures below) and it’s scary. It’s scary to step on the scale each day. But I have to enter that in my weight diary because we need to keep a close eye on it obviously. I never ever ever could have imagined myself as someone who could barely eat and drink. Whose diet was a grand total of 500-600 calories/day. Only 150 of that coming from my feeding tube. (Which is literally saving my life right now and I am positive I would be collapsing and passing out without it.) I went to the Cleveland Clinic at the beginning of March and saw my motility specialist. He is very puzzled as to why this is happening but we have the start of a plan in place. We discovered that the first half of my colon has been completely full for months, regardless of the amount of laxatives I’ve taken. Essentially this means I definitely have significant slow motility down there. At this point we don’t know how extensive the dismotility is throughout both my intestines but are working to clean me out with a strong laxative. It’s been working, at least on my end. (Hah!) I’ll be doing a follow-up X-ray this week to see how much progress we’ve made and depending on that and/or other things we might re-do my Smart Pill test and compare it to last year because things have definitely gotten WAY worse. Through one of the most amazing, God-given blessings in my life this past month I have an appointment with the Intestinal Rehab Program at Henry Ford Hospital on May 8th. I will be meeting with the head of both their surgery and gastroenterologist teams as well as their dietician. I’ve been told they are very good and am cautiously optimistic that we will find another piece of this crazy puzzle. Right now, however, we are focusing our time and energy getting me the calories and nutrients I need. I will be admitted to the hospital tomorrow to start TPN (Total Parenteral Nutrition, also known as IV nutrition). This means that I will literally be fed through my veins, how crazy is that?! I have the most amazing nutritionist and DME and couldn’t be more grateful for their help in all this. I promise to tell you lots more about that later ;) It has been a LONG, frustrating, difficult process getting to this point - mostly the TPN part - but I made it! God was with me giving me strength, and my family, friends, and your prayers helped immensely. Thank you so much! I will try to update soon. ♥️ March 10th, two days ago, marked my third anniversary since diving head first into this crazy journey. In winter of 2016, we knew something was majorly wrong with me and I needed much better and more intense treatment for my lyme disease. Shortly after that I was seeing Dr J, one of the best lyme specialists in the country. I started IV and oral antibiotics, enduring intense treatment cycles and horrific side affects (herxing). Ten months, a gallbladder removal, and many, many breathing scares later, I was forced to stop. Before I continue, no, that year and a half was not a waste. I saw big improvements in certain areas that have stayed to this day. I am a totally different person than before the IVs.
In May of 2017 I was diagnosed with gastroparesis. This completely halted my lyme treatment since I wasn't getting enough nutrition and calories. The decision was made to surgically place a J-tube into my intestines so I could get nutrition that way and continue treatment. (At this point I was only 99lbs with a BMI of 15) But no... my intestines decided to have slow motility as well, leaving me with the inability to, once again, take in enough calories and nutrition. Do I regret getting my tube? Absolutely not! Even though it's caused so many problems, ER visits, post-surgery complications, and more, I do think it saved my life. It doesn't give me enough calories, but it does give me some. For that I am so thankful. But once again things took a downward turn as my motility continued to worsen. I began seeing a gastroparesis specialist at the Cleveland Clinic in spring of 2018 and started a motility medication that summer. Unfortunately the med didn't do nearly the amount improvement we were expecting. I was also diagnosed with Ehlers Danlos Syndrome, a genetic connective tissue disorder that, among many other things, can cause gastroparesis and gut motility problems. It generally manifests itself in the early twenties so the timing makes sense. We are hopeful that with lyme treatment it will improve, but right now things have only continued to worsen and I am losing the weight I did gain after getting my tube. Currently this is the biggest area of concern and I am now working with both my local GI and the Cleveland Clinic to create a plan for moving forward. I am hesitant to think anything will work, but of course we never know what the future holds. It has been an exhausting, frustrating, agonizing, and painful year - both physically and mentally. In addition to my GI system, I am struggling with so many other things, including worsening of my asthma and coughing, along with chronic, horrifically painful headaches. It has been very difficult emotionally to deal with it all, but I made it through. God is faithful. I usually create a video to 'look back' on everything that happened in the previous year. But right now something very exciting is in motion that is also in video form. I cannot wait to share it with you! Thank you for all your love, support, and prayers. I literally would not have made it through without them. You are making a difference in my life. ♡♡ It is 1:00 am as I write this, sitting in bed, curled over my heating pad as I battle terrible abdominal and gas pain that is sadly not uncommon in the least. Sleep has been evading me lately. It could be from pain, my nervous system, the super moon this week, or something entirely different.
I haven’t written in a long time because I didn’t know what to say and where to start. I still don’t, not really. How does one convey an experience like this, a life like this, through words? I have likely had more breakdowns in the past two months than the prior year combined. Things have become so overwhelming and discouraging that it is impossible not to feel angry, depressed, anxious, frustrated, and trapped. Trapped in my home, in my room, in my body, in my mind... We are struggling to find doctors that can truly help me, and making the hard decisions whether or not to commit to potential doctors and treatments. The unknown is very scary, especially because I feel my body getting weaker and more symptomatic as my GI motility seems to continue worsening. This week I have felt the best (GI-wise) in a long time. I’ve been off my feeds for three weeks and only ‘eating’ liquids and some baby food. THAT - the liquid diet - has made a HUGE difference. I’m not backed up, (in fact I’m basically cleared out!) the amount of pain and gas I’ve had has drastically improved, and I don’t feel yucky and bloated. Except I’m not getting the nutrition, calories, etc etc that I need. And so continues the drama of Anna’s GI system. It has been a desperate struggle these past weeks... months... years. Over time it begins to wear you down to the point that you begin to wonder if life will always be like this. I know deep down that it won’t, but that doesn’t make these moments any easier. On top of everything else, my family’s financial situation has forced certain things to change drastically and I’m struggling to hold myself together and keep from panicking. A very good friend of mine shared this article, by Vaneetha Rendall Risner, with me and one phrase practically slapped me in the face. Some days he will do far more abundantly than all I can ask or imagine. And other days, he will sustain me in the storm. Right now I’m in the storm. Intrenched in mud, pummeled by rain, tossed about by the winds, shaken from the earthquakes, and exhausted from trying to survive. BUT, storms don’t last forever. This past year, 2018, was incredibly hard. In all honesty I experienced more depression and anxiety than my entire life combined. It felt like I was completely stuck and nothing was helping at all. I felt like I was no closer to starting treatment for my Lyme Disease than the year prior. Which is actually true.
When I first think of these past twelve months, all the things I’ve endured and continue to endure hit me hard and I feel frustrated and discouraged. But not everything is the same. Yes, I did have multiple feeding tube infections that required much suffering, three rounds of IV antibiotics, and a replacement of my tube to get rid of. BUT I haven’t had an infection since. Yes my headaches have gotten to the point where I experience a level 8-9 headache on the pain scale multiple times a week. BUT this led me to a chiropractor who specializes specifically in the cervical spine, which is where my problem lies because I have something called Craniocervical Instability. I start a treatment regimen with him in the beginning of January. He might also be able to help with other neurological issues I have in my body! Yes my gastroparesis - and really whole GI tract - has continued to worsen. I had to switch from eating rice noodles to just plain white rice several months ago because the noodles contain fiber and I can’t handle that anymore. As of right now I haven’t been running my J-tube feeds for over a month. I usually have to unhook several days each month anyway (which was increasing) because my intestines get so backed up and need a break. That’s what I’ve been working on this fall, figuring out how to get my colon moving consistently. When I stopped my feeds a month ago I stayed off them longer than prior times before hooking up again. But this time the feeds immediately made me feel terrible, constipated, and in so much gas pain. So I ended up stopping them after about 36 hours. I tried to do them overnight about a week later and the pressure/gas/something else maybe, made the extension pop out and I woke up in a puddle of formula. I’d even lowered the rate if mL per hour. But even with being off my feeds these past weeks I haven’t felt this ‘good’ in a long time. I’m clearing out much easier, have less pressure in my intestines, and feel less yucky. Honestly that could be because I’m actually going to the bathroom. (Still using laxatives and loads of GasX though.) BUT even through all this - the weight gain, the real weight, the, ahem, food weight, and then the weight loss this month - I found a doctor who really has the ability to help me. I had a very specific test done last winter where we discovered that my small intestines have some slow motility as well. This doctor is at the Cleveland Clinic and specializes in gastroparesis and gut motility. He started me on a motility medication called Propulsid in July, and although we haven’t seen anything close to the results we were hoping, I have noticed a small difference in how quickly food moves through my stomach. Even though I remain seemingly stuck waiting to treat my Lyme Disease because I’m nowhere near getting 2,000 calories a day, my lyme specialist has still tried to work with me as best he can. I also got a huge diagnosis this year that makes loads of sense and explains quite a lot of things going on in my body. I have Ehlers Danlos Syndrome. It is a genetic connective tissue disorder that basically means the collegen, and therefore everything that connects everything, in my body can’t do its job correctly. I’m super flexible and kinda crazy but it’s likely a very big contributor to my gut motility issues. No, there is not a cure for EDS. Yes, I’ll always have it. But yes, there are ways to manage its symptoms. For example, my new chiropractor will hopefully help these headaches my EDS is causing. Health things aside, I conquered something huge in August. I went to Texas! Without any of my family I successfully flew five flights, stayed in a hotel, and attended the most amazing event over the course of five days. San Antonio was a fantastic place and time to experience my first Younique (The company I am a part of.) Convention, meet friends in person, and make wonderful memories. Although most of the time I felt absolutely horrible, I had many incredible experiences and I don’t regret it for a second. ________________________ A new year is almost here and I’m actually very excited. I have multiple appointments and new doctors coming onboard my case. I will be seeing Dr Cline at the Cleveland Clinic at the beginning of January to discuss what else we can do to help me get the nutrition I need. I will also be starting treatments with my new chiropractor that should help my headaches. AND I have an appointment on January 9th to see a doctor at the University of Michigan that I have been waiting to see for months. She will be very likely be diagnosing and treating me for something called Mast Cell Activation Syndrome. I promise to tell you more about it soon, but for now just know that it is a whole other angle that might be able to help my GI tract moving. Although I have many exciting things with a lot of potential to improve my health in the near future, they each cost quite a lot of money, particularly my chiropractor and potential treatments from my U of M specialist. I am so grateful for everything you can do to help, whether it be financially, prayer, or both. I truly believe 2019 will be a year of answers. Click HERE to visit my GoFundMe page. The in between days are the hardest. The waiting, the unknown; it really gets to you. I think those ‘everyday days’ are truly the most difficult. The days where you feel you should be doing something because you’re not that sick, you could be worse. Then the days of doctor appointments resulting in little to no progress. So you start filling your days with research and begin realizing you might have found a missing piece of the puzzle. That starts the stress of tests, so many phone calls, doctor’s notes, and much more needed to start seeing the doctor you believe can truly help with this puzzle piece. But that all takes so much time and before you know it nearly a month has passed and, although you are close, you still don’t have everything you need. Then comes the insurance side of things because, well, money, and that complicates tests even further. The entirety of these things begins to cause so much stress it physically paralyzes you and causes reoccurring panic attacks. You know you’re pushing your body too hard, but after having your 24th birthday and realizing you are officially in your mid-twenties, it’s crazy hard not to look at the timeline of your life and wonder where you’ll be in five years. Or just one year. So every moment waiting for a doctor’s appointment that could possibly change the way your body is functioning and lead you to the next step toward healing is incredibly frustrating and stressful. You know it’ll happen, but not knowing when is the hardest part. So meanwhile you keep doing paperwork and tests and trying to force yourself to rest.
I know numbers don’t mean everything, but I really didn’t want a birthday this year. And that’s something I never thought I’d say this young. I’m still so grateful to have been on this earth another year, I just wish progress could have been made on my body during the past 365 days. It feels like my life is just ticking away while I scramble in the dark as fast as I can trying to save myself from my own body. |
Anna RoperStay connected as I go through this journey with Chronic Lyme Disease. New here? This is a great place to start.
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