HOPE

imageIf someone told me 10 years ago that at the age of 31-the age where I thought I would be a young mother, I would have to fight for my life as soon as I opened my eyes in the morning I wouldn’t have believed it. I ate a very healthy diet, I exercised almost every day, I went to my yearly physical, I worked with adults and children with disabilities some of whom had serious behavioral issues which took a lot of energy to deal with. I biked for miles upon miles, stopping only when my legs couldn’t push the pedals anymore. College, graduate school, Internships in DC, South Africa, Florida, Boston. Some years I worked two jobs… It’s crazy to look at my life in segments. Slices of time that overlap and either fly by or go very slowly.

 

Right now everything is going by fast. Each day seems to be so similar to the last that it just seems like I’m living the same day over and over in a cloud of Benadryl doses, epi pens and feeding tube schedules.

 
Intuitively though, sometimes I know a more difficult experience is coming my way. It was a potentially deadly sepsis infection last week. So instead of saying that will never happen, I say okay Denae, what’s the worst case scenario? I let it sink in that chances are I’ll have to battle x,y,z and then after that I return back to dealing with the present problems and tell myself to keep on moving. Don’t stop. Don’t ever stop trying. Yes, you might be swollen, the bone pain and burning might be crushing but yesterday you made it through. And then it builds and builds to that grand feeling of victory.

 
I wake up in the morning fighting off reactions, but to be quite honest, even in my darker days since being chronically ill, I am so tremendously grateful that I even wake up. It’s exhausting to battle but that feeling I got when I biked up the tallest hill is almost the same feeling as knowing that I have one more day closer to remission. One more day to be with my soulmate. One more day to truly know how precious and fragile life is.

 

As life changes, so does your perspective. I might’ve never thought I would have to live life in such precarious health. But if you told me at age 15 that I traveled to different continents, did well in college and met so many wonderful people and the love of my life during my 20s, I wouldn’t have believed it either.

 

If you’re feeling like you’ve lost your battle, I promise you haven’t. As long as you’re breathing, you have a chance. No one and nothing can ever take away your hope. Grieve, but always remember your potential. Just keep swimming, friends. You will make it through. ❤️

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*Brad and I’s friend Amy has set up a donation site to help with my medical, living and travel expenses. Check it out and please consider donating or sharing the page! We really appreciate all of your support. ❤️

https://www.youcaring.com/denae-and-brad-manchester-557174

 

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Surviving Sepsis and Beyond

Apparently, I had the worst bacteria for sepsis, with not just one bacteria set, but 2. The one that’s well known is Pseudomonas aeruginosa. It’s one of the most aggressive infections and could be fatal in people who are already very sick, aka me 😳. They said if I had waited even just a day to go to the hospital I probably would’ve been dead or near death in the ICU. The other bacteria is called enterobacter cloacae which can be very resistant to treatment but in my case, the antibiotic I’m on is seemingly attacking the infections.

At first, all of my treatment in the ER and on the floor when I was admitted was good. I was getting continuous IV saline and dilaudid for pain which helped the initial recovery immensely. I felt like hell and to be honest I don’t remember much of it, since my fever was between 100-103.8, approaching 104. They packed me with ice bags all over my body since I couldn’t take the fever reducing meds. Fortunately the fever broke a couple days later but the pain and recovery is probably going to take some time, given I was severely ill before all of this mess.

I never wanted that PICC. It actually was placed as a temporary measure for vein access (since mine are all scarred) when I was getting transferred to the main hospital from another Brigham facility back in January. I was suppose to be getting a port. After transfer they decided not to do the port as inpatient- afraid of infection risk. Irony🙄 they discharged me without any orders for it to be taken care by the visiting nurses and we had to work hard to figure out the paper trail to get it taken care of.

I was suppose to have a tunneled catheter this past spring but again, another block, with them saying that since I had the PICC line, I didn’t need a tunneled cath, even though I told them that the PICC had a higher infection rate and was probably going to get infected if I didn’t switch to another line soon. They were not interested in my opinion, and were more concerned about my “heart”saying I was too unstable to have surgery since I am tachycardic and have reactions…and they left the PICC in. I have since had 2 feeding tube exchange/replacement procedures and haven’t croaked once.

Fast forward to present day: the reason I even needed a central line is because of the complexity of my conditions. I cannot drink enough fluids by mouth or by tube, because of mast cell disease reactions, autonomic disorders (POTS) esophagus abnormalities, and severe GI conditions. If I’m not properly hydrated this leads to havoc- it makes the mast cell reactions much worse and more frequent, it speeds up my heart rate, makes my digestion slower, swells my GI system and all of this leads to swelling everywhere and then anaphylaxis. Mast cell and POTS/autonomic conditions work together. If one thing isn’t being taken care of, they both go nuts. It’s actually impossible for me to get down even the required amount of fluids for a normal person, never mind a POTS patient who most of the time needs double the amount of liquids and salt in their diet. gastroparesis (stomach paralysis) makes it very difficult for me to absorb meds, especially quick acting meds needed during allergic-like reactions and anaphylaxis, which is very frequent and a daily occurrence for me.

Since my PICC line was infected, the medical team is refusing to place another central line. Possibly never, all because of one doctor who won’t be named. I get that placing a new line when the infection is still present isn’t a good idea. It would become infected again if the antibiotics don’t get the time they need to clear the infection from the last line. But because of one doctor with a lot of reputation who thinks I wasn’t benefitting from hydration or the IV meds (I know😐🙄) they say no line for 2 whole months. Or ever because of my compromised immune system. They think placing a new line would lead to another infection because my body has already had one with a line so that means it makes it more likely the new one will get it too. For me, this changes Brad and I’s life. Negatively… It means many things…. This means I won’t be able to get IV meds at home (Benadryl and ranitidine) which prevent reactions from escalating to full blown anaphylaxis, I won’t get the necessary hydration I need to be even somewhat functional with my heart rate. The heart rate will become erratic (it already is because they are refusing to give me saline inpatient as well right now), my veins are too scarred for an infusion center and I’m mostly home bound any way and because of the dehydration the swelling will go up in my upper body and organs.

Pretty much- I’m screwed.

All because of a PICC line that wasn’t even suppose to be left in my arm in the first place. It’s funny…You think that Boston is one of the best cities in the world to go for medical care. And for the most part, it is. If you have something well known with good funding, cancer for instance, it’s good to live here. But for mast cell activation syndrome (MCAS)- no. Don’t ever come here. Turn around and run.

I’m so sick of being treated like my opinion doesn’t matter. Because now… I’m afraid I’ll be silenced whether I want to be or not.

Sepsis sucks. Surviving sepsis and getting treated like this sucks even more. It was already an uphill battle with reactions, with Brad not being able to work until we got a PCA. Now there’s this and we have no other options other than to possibly move hundreds of miles away to where I can get proper treatment. The challenge is getting me there alive.

Reactions, central lines and all of the Benadryls 

Health update: I’m getting a double lumen 6 french Bard power line tunneled catheter (a type of central line) implanted in my chest early tomorrow morning at the Brigham. It’s smaller than a Hickman with less infectious risk and it is a long term central line catheter versus the temporary PICC line in my arm currently. It will allow me to get fast acting/life saving meds, possible TPN if I ever need it, fluids and blood draws since my veins have been blown and bruised/scarred from multiple IV’s and blood tests during hospitalizations. The surgery won’t take too long and hopefully the recovery is fast, despite the Ehlers Danlos Syndrome. I’m getting a feeding tube exchange from an extension tube to a button in a couple of weeks. They can’t do both the tube exchange and the central line surgery together because fear of infection. 
The mast cell reactions are pretty intense- my memory and my oxygen have worsened so I am extra tired and the dysautonomia (POTS and IST) is getting worse. I saw my autonomic neurologist yesterday and he prescribed home supplemental oxygen and is going to try me on new meds, one at a time- Florinef, Mestinon, and Midodrine. But what we fear is the mast cells are so activated that no matter what medication I’m on for the autonomic disorders, it won’t work because my mast cells aren’t stabilized. A phone appointment with Dr. Castells on Monday did not go as well as I thought it would and she won’t try anything new on me because my body is rejecting mostly all new meds and all supplements, except for Ativan which is used as a mast cell stabilizer and sedative. She’s tried all of her treatment approaches so she doesn’t have any other treatments she can order in the near future, except a lower dose of Xolair (had a reaction to the first standard dose in November/Dec?)  
I’m going to be seeing an oncologist with experience in mast cell activation at Dana Farber mid-April, so fingers crossed he can think of something or follow Dr. Afrin’s protocol- I’ve heard he is the best MCAD physician. Hoping for a sooner appt. but Medicare doesn’t kick in until June, so I would have to wait until then to see him. We’re also looking in to Angel Flight (medical staff on board during plane trips) since even just going a half hour in to Boston by car is a lot for me, never a mind a flight to Minnesota where Dr. Afrin is. 
Brad and I are going to continue to fight mast cell together because as he said when I was having a hard time yesterday, I’m worth saving- something myself,  my doctors and loved ones agree on. If you could send some prayers and positive vibes our family’s way, especially for Friday’s surgery because any trauma to the body is a field day for mast cell activation, we would really appreciate it. Thanks guys! ❤️😊

   
  

  

Health Update 

I had a follow up appointment with my autonomic neurologist on Monday at the Brigham- Faulkner. Brad forgot to get my wheelchair from our old apt because he’s been packing the car to move stuff in to my parents, where we live now. So we had to use the big bulky wheelchairs they have at the entrance of the hospital and man were we a sight! 😂 Bumping door ways with my feeding tube bag swinging on the wheelchair pole, frantically trying to find the office even though we’ve been there twice already and me blacking in and out the entire time 😂
my neuro Dr. Novak is really nice and extremely knowledgable about Dysautonomia. So when he kept saying this is bad, your heart rate is very bad repeatedly throughout the entire appt while Brad had me lean on him so I wouldn’t fall off the table from the black outs and reaction-you know it’s not a good situation 😔😣 He put me on a calcium channel blocker since I’ve failed the past 2 beta blockers already. My heart rate reaches 185-190 at its worst. It’s especially bad after showering (which immediately follows a Benadryl injection since I react instantly) and the evening time when the temperature drops. The HR is between 120-170 throughout the day, even at rest. Sitting up for an extended period of time sometimes makes me have a mast cell reaction, swell and black out. 😩 I must’ve blacked out at least 10 times during and after the appt, and traveling anywhere nowadays puts a huge strain on my body, especially with the lovely New England temperature change. ☁️🌦 Dr. Novak wants to observe me on Midodrine in the hospital in a couple weeks if I fail Verapamil, the calcium channel blocker.

 

The chest pain and the organ swelling have been brutal so I’m hoping something works soon🙏🏽. The 1-2 liters of saline a day has been helping the chest pain and I’m recovering from reactions faster with it🙂. Today has been better day, which I’m grateful for.
What I fear is since my mast cells are too active, the Dysautonomia won’t calm down until I get the mast cells under control.🤔

 

Dr.Castells wants to try a lower dose of the Xolair injection next month, so fingers crossed that does something positive and doesn’t land me in reaction again.
I still have the PICC line in since Metabolic Support isn’t comfortable with doing the power port surgery because they’re afraid of the mast cell disease since they’ve never had a patient with it before🙄 the GI is waiting to hear back from Interventional Radiology to see if they are equipped to do it.

 

This rare disease thing sucks. 😑 Even the other type of Dysautonomia I have, Inappropriate Sinus Tachycardia is rarer than POTS and I have the “lucky” experience of having both severe IST and POTS. My heart rate becomes faster along with awful symptoms when I stand up but even laying down my heart is going fast. It’s like I’m perpetually running a marathon all day, every day even when I manage to fall asleep for a few hours and wake up in reaction. My cognitive and memory ability is badddd. I forget everything and Brad has to remember. We’re hoping I can get a home nurse so he can go back to work and you know, have at least a semi life again, since I can’t be left alone for too long. Brad and I are glad we moved in with my parents, we really need to be with our family. ❤️

 

I have enough Benadryl in me to put down an elephant, but instead the elephant is laying on my chest 🐘🐘🐘😓 Hoping things get better as the week goes on. I’ll never stop trying to find something that can make things better, for both me and Brad. He’s such an amazing best friend and husband. We deserve to be able to do newlywed activities rather than meds and hospital/doctor visits. We’ll make it there, eventually. ❤️ gotta fight for the ones you love, and I love myself and my beautiful husband. We got this. 👍🏽


It’s Feeding Tube Awareness Week!  

Today is the beginning of Feeding Tube Awareness Week! I will try to post facts about feeding tubes and the awareness we need throughout the week. Today I’ll share what my experience has been like in the “tubie” world so far.
This past year was a doozy. 😙🙃 My health had taken a nosedive last spring and instead of a honeymoon or endless strings of dates to the movies to celebrate being Mr. and Mrs., Brad and I were in and out of the emergency room right after our wedding in June.🚑 It came to the point that eating healthy food and taking all of my meds by mouth became impossible due to severe “possible (it wasn’t diagnosed officially until October)” mast cell disease reactions, angioedema and hives along with several GI/stomach issues.

I had lost almost 15lbs by the time they decided to put the nasal gastric (NG) feeding tube in when I was inpatient for two weeks in late June/early July. The NG feeding tube went through my nose, down my throat in to my stomach. An NG tube is usually a temporary tube to see how a patient handles the formula feeds but is the most uncomfortable tube because of swallowing and throat irritation issues. A very long 2 months later 🙄…. I had surgery through interventional radiology where they put in a long term Gastric Jejunal (GJ) feeding tube. It was a painful recovery but I don’t regret it. It was either that or be malnourished due to a combination of issues- mast cell disease, gastroparesis (partial paralysis to my stomach), a swallowing disorder from an abnormality in my esophagus, Ehlers Danlos Syndrome and severe acid reflux.
I use my tube for both medication and formula. It’s hard to not be able to eat good, tasty food and I did have some food intolerances and allergies before the tube- however since I grew up in an environment where food was a big part of my family and cooking was one of my favorite hobbies, it’s been tough.

Sometimes I even have to wear a mask if someone is cooking certain foods I’m reactive to. Sometimes I can eat by mouth and sometimes I can’t. The food I can eat is extremely limited, bland and specific and it’s usually not enough for me to live on, so formula helps me get what calories and vitamins I need to live. However, a safe food or formula from the day before can become my enemy the following day, with the threat of an ambulance ride or ER trip after a severe reaction where Brad or a friend/family member has to use an epi pen. I have to rotate my foods and formula because of it, so my body won’t become completely resistant to the food item or formula.

A feeding tube is just a different way of eating, and also receiving meds so they can be more fast acting for patients with motility issues. My life isn’t easy and I’m still trying to accept that I have to use a feeding tube for meds and nutritional support. I might not need it for the rest of my life but for now, it allows me to live and that’s a gift in itself. ❤️ #noshame #feedingtubeawarenessweek #GJtube #NGtube #NJtube #mastcelldisease #gastroparesis #acidreflux

A Spoon Filled Day 

Monday was a great day. I got to see my favorite dog Riley and my friend Amy, I had a good appointment with my autonomic neurologist, and after all of that I still had the energy to go to the mall with Brad to get vanilla ice cream (50/50 reaction chance but I was willing to risk it 😋😉).You don’t realize how much you take for granted until you can’t do them anymore. That’s the one good thing about being chronically ill- you never take anything for granted and soak up the small good moments. It’s been the hospital, our apt, and my parents house for many months now so to have a good day was much needed. I’m still paying for it now but it was worth it, just to be with my husband out and about. 
The autonomic neuro appt was went well. 😊 I already knew my heart rate/autonomic system and chest pain was bad but the neurologist said I’m a pretty severe case. He put me on a very low children’s dose of propranolol since beta blockers can worsen mast cell reactions. I increase it every week by half. If I react to it there are other meds to try and he said I could come in to be observed if it doesn’t go well. At the moment my resting heart rate is on average 100-125 lying down, 130 and beyond standing up and 140+and beyond during reactions even sitting or lying down. Benadryl can calm it down to 90 sometimes but not very often. I was officially diagnosed with severe Inappropriate Sinus Tachycardia with POTS features under the autonomic dysfunction “umbrella” since I have symptoms lying down and standing up it increases. The standing leads to a lot of chest pain, more swelling, dizziness and black outs so I have my trusty walker to help me out, and when I can’t walk myself Brad unfortunately has to take over with pushing me.
My PICC line is still in 😔 and still no word on getting Benadryl to put in it instead of the muscular Benadryl injection. The IM Benadryl is not going too well anymore since I have so much scar tissue. It bleeds a lot and is leaving huge bruises at almost all of the injection sites. But it’s either 2-3 of those injections a day or an epi pen and with my heart the way it is I’m trying to avoid epi. Hopefully the rescheduled port surgery is made soon as well so I can receive home hydration and Benadryl through that👍🏽. For now this PICC line is only in because I don’t have vein access anymore since they are scarred from all of my hospital/doctor visits. 
Brad and I would be nuts if we didn’t have good coping skills with all of the fight or flight experiences we have every day. But we’re a team and every time someone calls me Mrs. Manchester, no matter how much pain I am in, I smile inside. It’s a nice feeling that not even mast cell can take away from me. ❤️ 

   

Meds and procedure plans 

I have some health updates, friends.❤️ this picture of me was right after I saw the new GI specialist at Brigham Monday. 
  
I was able to suppress the reaction until after the appt and not during it thank goodness 😁✌🏽️ it eventually went up to this even after a Benadryl injection but I managed to get by with a double shot of Benadryl and my other rescue meds. 
  
The appointment went very well. The GI was really nice, thorough and was shocked at how terrible my health has been.😔 He referred me to Metabolic Support and since he doesn’t specialize in mast cell disease, he’s also seeing if one of his colleagues that does specialize in mast cell can take on my case. I will be receiving a surgically placed port in my chest after I meet with Metabolic Support. This will help with the saline, Benadryl injections and IV meds so I won’t keep scarring my muscles and veins 😣 He’s also going to look in to a Mic-key GI feeding tube button as my current extension one is falling apart yet again- the caps are breaking and losing flexibility and acid is lining and eating away the tube from the severe acid reflux I have, which has been getting worse during the reactions. I had to get a replacement tube because this happened 3 months ago as well and it was hell. Since I’m reactive on and off to water and formula now I’m chronically dehydrated so Metabolic Support is going to set up the saline which will go through the chest power port. We will discuss the proper feeding tube formula for me going forward too. I’ve been tolerating some foods by mouth but it leads to me being reactive to them when my body gets resistant to it eventually. It’s a gamble no matter what I do or consume. Things are tough to say the least but I still have some fight left in me. I think I always will. 

My memory has been bad lately, but in a way it’s not so awful because I somewhat forget about the pain and swelling from the evening before (my worst time) and I start another day ready to try again. I’m just hoping the immunosuppressant Ciclosporin Dr. Castells prescribed starts to work soon…
Growing up I was an overachiever, the nerd with the bottle capped glasses, huge backpack and clarinet case in tow, trying to not let my learning challenges get in the way of success and college. I think some of that drive is still in me today and every day I thank God for it because every single damn day… It’s a lot to go through. I wasn’t proud to be a nerd with high functioning autism back then, but now I am because it saves my sanity. Weird how life works. 
When I’m blacking in and out, trying to fight to not use the epi pen I feel the people I love praying for me, the people that have passed but are still here, in my mind and heart. I smell my Grandma Eve’s apple pie and Mac and cheese in the oven, I smell campfires and I hear my Papa humming and feel him holding my hand. I feel cut off from the world most of the time but in those moments, those moments are the ones that keep me alive and fighting. And when I’m finally able to speak and regain consciousness, my superman husband Brad is by my side. It’s okay I’m scared and angry sometimes… Both Brad and I are. But we have each other and our loved ones, past and present. We have our love. And for now, that has to be enough. 

Health Update 

Really tired… A lot has happened the last few days. This picture is from Monday when I had a tilt table test to test my autonomic function again. The doctor said I might have both borderline POTS and severe atypical sinus tachycardia because my heart rate is high lying down and increases standing. Usually with POTS your heart rate is just high when standing. I get the pleasure of always having tachycardia and feeling like I’m running a marathon when I’m just in bed or sitting down. 😂😰😭

Two epi pens in two days this past weekend. I tried so hard to control the reaction but it kept going up. My entire body swelled, I felt like ice was going through me and started shaking. It was so painful. My hands kept burning. My chest and shoulder muscles swelled to new heights. We had to use the epi. I didn’t go to the ER because I had two appts I couldn’t miss the next day, which was Castells and the autonomic lab. Dr Castells is always very busy at the clinic in the main hospital so she couldn’t talk to us long there. 😔 She said only Dr. Afrin (another mast cell specialist in MN that treats severe cases) does the continuous Benadryl pump so the patient can always have the same dose in their blood stream, making reactions less harsh and my muscles could take a break from the Benadryl injection needles. But she doesn’t do it because there’s not enough studies to tell her it works. Sigh… She said I can make an appt with him if I wanted. He’s booking more than a year out and like I said he’s in MN so the chances of me getting stabilized enough to see him is impossible right now, but I’m going to make an appt once his office calls me back to set up a financial need plan since my insurance doesn’t cover it. 
Dr. Castells prescribed Ciclosporin, a powerful immunospressant medication also used in organ transplant patients so they won’t reject their new organ. In my case, it could help with calming the mast cells down so they can stop activating at everything, hence stopping them from attacking my body. She said I can take as much IM Benadryl that I need so I won’t have to epi since my heart isn’t doing so well. Since my chest and shoulders swell pretty badly she told me to ice my chest when a reaction is building. Hoping Ciclosporin works within a week except there’s a problem with not using epi.

 1. The Benadryl injections didn’t stop this weekend’s reactions and a couple of nights ago the reaction nearly killed me 

2. The scarring from the injections makes my muscles hurt badly 
She wants me to get a port and saline and since the autonomic neurologist is not going to order the saline, I’m going to talk about it with the new GI doctor at Brigham next Monday. He’s going to be so overwhelmed with all of this. I am… everyone is. It’s so, so exhausting. The horrifying becomes routine and more trauma just keeps getting added every single day. I can’t be left alone because I can’t move during ANA and I’m in pre anaphylaxis as soon as I open my eyes to wake up. I took another Benadryl injection at 3am a couple of days ago because I woke up in reaction but could still move a little. Sometimes I can’t move at all. I’m just so tired. Both of us are. Thank you for prayers and good vibes the last few months. Please keep sending them- we need it. ❤️

  

Take My Hand

My body starts to shake. It looks like I’m cold but really, it means the swelling is just warming up. I focus on the music playing through my headphones to bring me through because if I move my legs even just an inch to counter the pain, it’ll only push me further in to the reaction. I have my phone in hand even though messaging friends is hard. I see pictures on Facebook of smiling friends and family, baby pictures, job promotions and weddings. I look at our own wedding photos and become transported to that time yet again. The first dance, the speeches, the way I fought the pain to go back on the dance floor in my wheelchair. Brad’s eyes. Brad’s beautiful brown eyes. I picture walking across the stage at Umass as I receive my master’s, happy tears sprouting and pride running in every corner of me.

I close my eyes and picture the mast cells in my body as they continue to pump up the swelling and I yell at them. I say here, here are my good thoughts, here’s my love and anger, here’s me, winning the odds and pushing forward no matter the cost. The burning pain roars and my throat starts to swell- the mast cells ramp up their power against my will. But I fight back. I refuse to let them win.

I have to move fast. I sit up and my heart rate exceeds 130 as the swelling rises. It hurts to be upright but I have no choice. It’s this or an epi pen with a potential ambulance ride within the next 10 minutes. Brad comes to help, grabbing the bag with the Benadryl injections, prepping the site and preparing the ice bag to put on the muscle after I’m done putting an inch long needle through my muscle. Even though I’m starting to black in and out, it hurts less if I put it in myself. I try to focus and steady the needle, ignoring the pain. I’m always afraid when I put the needle in, no matter how many times I do it. I position and put it in to my arm muscle instead of my thighs- they’re scarred up from the 30 injections I had to use in the past 3 weeks. I breath slowly and evenly, counting to 15 as I push the plunger in to my muscle. It burns but my entire body hurts so it mixes in with the other consistent pain from the reaction. I slowly take out the needle, careful to not spill any of the Benadryl fluid, but half of the time I’m so dehydrated that some Benadryl leaks.

I breathe a sigh of relief as the Benadryl works it’s magic and my body stops shaking and burning. The swells drop and the mast cells quiet down- their party is over now, at least until the next reaction. Sometimes the reactions are continuous during bad flare ups when meds just don’t work and the Epi pen is my best friend. So, when the meds do work, I celebrate in my mind. I’ve won. I gave myself the injection, I didn’t back down.
I go to sleep and whether it’s in the next 5 minutes or 8 hours, I prepare for my next battle, reminding myself to be strong and brave. I take my own hand and lock it tight with the other for both strength and comfort. I think about how much I love this world and the people. I see my age on the birthday banner we have yet to take down in our bedroom, and I’m hoping in 20 years I can put a 5 in front of the 1.I think about the hours rolling in to the next day and smile. I’m going to see another day, a chance to keep fighting and a chance to experience the small things- holding Brad’s hand, hearing my dad’s laugh and my mom’s strong voice. Seeing how great of a mother my big sister is now. I hear Amy’s voice as she holds my hand through reactions. Seeing the sun shine on a bright blue sky day or the snowflakes fall to the ground, calming everything that surrounds them. 

I say, I did it. I get more time- I won. I thought I was too tired for battle but every time, every reaction I fight. I fight so hard that it makes climbing up mountains and skydiving in Africa and going through graduate school seem easy. All for the simple fact- I’m worth it. Life is beautiful despite this awful disease and the pain it causes. All I need is a hand to hold and that can always be my own.

#keepfighting #mastcelldisease   #anaphylaxis

Getting to the Top 

I grab my helmet on the couch and place it on my head gently, careful not to get my hair caught in the straps. I put my backpack on, packed with an apple, peanuts, a small book and water for energy. I know I’ll stop at Ames Pond to refuel and relax. I hop on the bike and set forth, headphones in ears and feet on peddles. There are many little and big hills along the way. Trees, birds and bodies of water dance in my vision as I hold the handle bars tightly. A few minutes away from the pond, I have to conquer the biggest hill yet. Every time I get to this hill, I don’t think I can make it all the way up even though my track record says differently. I push the doubt out and keep going up. I’m breathing fast and my legs are so tired that all I want to do is stop and rest, just for a few seconds. But I know if I choose that, it’ll only break the momentum and make it harder. So I keep going. I say to myself, just one more push, just one last big hill until you see the pond and ducks. I say, I love you Denae, you can do it. You can do anything. A Tribe Called Quest is blasting in my ears and it’s just me, the hill, the bike and the tunes. I keep climbing and climbing until the sun light at the top of the hill breaks through and I realize, I made it. A huge smile comes to my face and I know, just for a moment, I came close to heaven as I fly down the top of the hill leading to the pond. It’s just as beautiful as I remembered it.
Today I keep pushing but this time it’s not on my bike. When I have a reaction and the pain is so brutal that I’m shaking, I picture myself on that bike, the many times I climbed that hill and I tell myself, just one more push, just one more burst of energy. Life is funny that way- the literal hills you climb help you prepare for the many challenges you never thought would happen to you. The release is at the top and even though I haven’t reached that point yet, I’m climbing the highest hill yet every day by fighting for my life. I love it here too much so I’m not letting go of the handle bars anytime soon. I’m going to keep climbing so I can help others climb their own hills for many years to come. Love to all of you tonight. ❤✌🏽️️ #keepclimbing

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