Friday, October 7, 2016

MCAS aka The Never Ending Hell Diagnosis

Where to start with this. It has been a while since I have updated, but I spent most of this summer quite ill, so I thought it would be time for an update. I touched on this in the past, but I have been officially diagnosed with mast cell activation syndrome. Yet another rare incurable condition. The easiest way to describe it is to state that I am allergic to everything, but not all the time, so one day I may be allergic to tomatoes, the next day I won't be.
So about April/May of this year I got ill with a sickness, they couldn't figure out what it was, but it was most likely a mild infection, so a flu or cold or something. I rarely get ill with anything common, so it was whatever.  Unbeknownst to me, that illness opened up he MCAS flood gates. Previously I had minor symptoms of MCAS, obviously they were so minor that I didn't have to treat them besides symptomatically when things would arise.  Again, to me this diagnosis was exciting because there are treatment plans, but of course being an new and rare diagnosis, it isn't even taught in medical school, med tech school, nursing school, etc., so as you can imagine the rigor for getting diagnosed and treated is very strict. I had to get two mediators positive on my tests.  I took my first round of tests in February, unfortunately I only had one mediator show, partially because they mishandled one of my tests, which is very common (these tests are very particular, some have to be cold at all times, and they go to different labs all over the country). I was bummed, but on the second round of testing in April I lit up those tests like a Christmas tree, five mediators were positive. Of course next step in the process isn't just getting treatment, you start with an H1 and H2 blocker, which I was already on.  Then you are allowed to start one treatment a month, luckily there are tons of treatments, unfortunately because the illness is so new, some medications work, some don't, it depends on the symptoms and the person, plus sine mast cells are stubborn I have to be on a drug for a month before we rule it in or out. My doctor said it could take me up to two years to find the right treatment plan. Since there is no one miracle drug he just starts you on the cheapest drug and we work up the list.
Well now that we have some more back story built up, I got this illness, and things went to shit. My body turned into a constant allergic reaction state, anything can set off mast cells, stress, light, heat, cold, food, particles in the air, smells, etc. you name it people have reacted to it with MCAS. My life turned from being okay dealing like I always deal with my issues per the usual, to being unable to even sit on my couch on home typing on my computer without going into anaphylaxis. The worst part about it was that I was now allergic to things I couldn't even see, I became allergic to food I used to be able to eat, I became allergic to meds that were previously fine.  That is just the nature of MCAS, your body is hypersensitive and attacks on overdrive. I literally wasn't sure if I was going to make it at some point, the toll it takes on you mentally and physically is horrible. I don't know how to better describe it other than that it feels like you are dying in an agonizing manner, your brain feels so much pressure from the swelling like it is going to burst, your skin feels like it is ripping off, your nose runs, your throat clogs up with mucous, you start to shake, you can't talk properly, you lose your vision, your lymph nodes swell, etc etc the list goes on. I never knew when the attacks would hit, I was forced to stay at home all day, live in a face mask and I still would go into ana multiple times per day. It was hard, I lived on benadryl, ERs and prayers that I woke up the next day. I was lucky with work because I had just rolled off a project and had some downtime until my next one, but I did get to a point where I almost had to quit work because I couldn't even take a phone call without going into ana, sitting at my computer was next to impossible, I didn't even drive for weeks and I only recently started going places on my own again in terms of driving and what not. I was in that state for about two months until I saw my specialist, luckily the first medication he put me on leveled me out, at this point I am stable at home for the most part and I only have a minor attack maybe once a week or once every other week, I have symptoms every day and I am always on edge, so I still wear a mask out of the house, but from time to time I try to go places without it. I now carry four epi pens with me and a pack of benadryl just in case, but it has been hard. I feel like I have probably lost a couple friends from this because I had to keep cancelling plans and was unable to show up at events. I am still working on the right meds, so going out for too long is tough without loading up on a lot of pre meds like benadryl and anti inflammatories to keep the nasty mast cells down.
Like I always tell my GI doctor when he asks me how I am, I always tell him well I am still alive and that is all I can say at this point, I am only at 60-70% better with my current state, but that could change any day and plummet back down, I am still trialing out other meds to get back to my normal state and possibly even a little better than I was before......nah,,,,,,lets just keep the goals to getting back to my normal sick status quo at this point

I know this is a lot of crazy info to absorb, so feel free to reach out, send me a message or leave me a note if you have questions. I am totally open and willing to chat about it to anyone who is curious. I am still working on it right now, but mainly focusing on my son, work and just keeping everything together in my daily life. Thank you everyone who has supported me <3 <3

Saturday, July 11, 2015

"The Last Piece of the Puzzle"

In November I started a new job and my life got exponentially busier, so I have not had time to write, much less breathe! I thought I needed a new update here though for the curious souls. I do not have cancer.....yet(sigh of relief can commence). For most of my life I have had random hives, I have found that I am allergic to all kinds of things, even things I was not allergic to before and I struggled to control the symptoms of my multiple conditions. I never really questioned it because, to be honest, my whole body seems to be in a weird state most days. Finally I got sick of it, I had a rash on my skin that would not go away, it was flaring up one day and I went into urgent care, because of course every time I went to the actual doctor the rash would not be there. The urgent care doctor looked at my skin brushed over some parts and exclaimed that I have extremely odd skin patterns and reactions.  He stated it was an allergic type of reaction and he wanted to send me to an allergist. My first thought was huh allergist for a dermatological item, but okay might as well go. The urgent care doctor said I should probably get my allergens retested anyways, so I thought it wouldn't hurt, since I haven't been tested for anything but metal allergies since I was a child. I did some quick research and found an allergist that I thought would be comfortable taking me on without pushing me out the door and telling me I am way too complicated. I went to the appointment and started telling him about the rashes and my long complex medical history, he stopped me mid sentence and said without a doubt it is mast cell disorder. He told me that it is common that people with eds, gp, etc also have mast cell disorder, he told me this was the last piece to my medical puzzle. He voiced concern that he felt my type is fairly advanced and told me to see a specialist here at the university as soon as possible. I of course call the next day.......soonest appointment is.....February....ugh. Of course now all the attacks, my heart, my stomach problems, and the other issues just fit. He said that the reason why my medications don't fully work when I am in "flares" is because I am just having tons of allergic reactions that are affecting my organs and joints on top of the conditions already there. I will not lie, I have been stressed since the appointment, the doctor pointed out mast cell overloads on my skin (which basically just look like moles) and He also talked about the potential for cancer, specifically an aggressive type of leukemia. Naturally along with my other conditions, this one is very rare and only a handful of doctors know about it and even treat it (which explains the long appointment wait). Because of the rarity and the complexity of the condition, the doctors who treat the condition are oncologists/hemotologists. I am thankful that I do live here in Minnesota at this point in time because one of the leading researchers in the field is who I will be seeing. Ironically, I have been having lots of issues in the last couple weeks and landed in the ER and this is the first time they looked at me and said there was absolutely nothing they could do, I had become too complicated. Luckily I went in during office hours, so they called the allergist and he gave them instructions to stabilize me. I actually left the ER that day feeling better than most times I have left.  Mast cell is so difficult because it affects my other conditions, so it made my stomach spiral and I have barely been able to eat since this reaction started a couple weeks ago. When I was brought to the ER i was having an allergic reaction and was hypoglycemic at the same time, luckily the steroids have been quelling the allergies, so now I am working through the stomach issues to help recover from the mast cell hit, back on a liquid diet and working on my sugar. It is a challenge, but I am working through as much as I can as carefully as I can. Just like everything else I have been through I know I will come out on top of this, I am fighting so hard to keep it under control, which is difficult as I am getting worse with age, but I know I can do it. Don't ever count me out because I will rise from this stronger than ever. <3

Monday, December 8, 2014

Long Time No Speak

So I apologize for not updating after my last post!! Unfortunately, a couple days after that post I was hit by a car. I have been spending the last six months recovering from that and I am finally back up on my feet again. I damaged my rotator cuff and dislodged my pacer.  I ended up healing he rotator cuff with three months of physical therapy, it didn't completely cure my shoulder, but it got me back to moving it at least!! Below is a pic of me with my amazing accessory for a while, my sling :)

My doctor didn't want to do surgery on my pacer before my shoulder was fully healed and I was deemed to not need surgery on my shoulder. It was not a pleasant time, my pacer was actually just jumping around in my chest and it is was fairly painful, I had to wear sports bras all the time just to keep my pacer in place so it wouldn't hurt as much.  Below is a x-Ray of my pacer all topsy turvey!!
Finally in August I got the all clear to have surgery!! I got surgery in September to repin my pacer back in place. Of course I wasn't expecting another surgery so soon, but I for sure could not continue living in pain with a ping pong ball in my chest.  The surgery went well, but there was a hiccup in that they forgot to turn my pacer back on until a day after surgery.  I ended up getting out of the hospital at the end of my third day there, so much less time than last time, but I only had to get my breast incision reopened to repin the pacer, since the stomach incision was for the leads only, which hopefully they won't ever have to do again :) This caused a set back in my recovery because I immediately went into a horrible flare because of the pain killer, lack of a pacer and surgery. I ended up not being able to eat for almost two weeks after surgery, basically on just a liquid diet, but luckily my doctor kicked up my pacer and it got me back on track. Of course I had to turn it back down to maintenance mode after that, but not an ideal way to spend the summer!!! I am just glad it is all fixed now and I am back at 100% again :)  I have put some photos below of my healing journey :)
Before surgery in my bair paws :)
Got a reaction from the IV tape!!
First photo post surgery, drowsy and tired (took forever to get me a room)!
Loki came to visit me :)
Brenda was the best nurse I have ever had!!!
First night home in my whale jammies :)
Booby with bandage
Booby without bandage
My first day back to work about two weeks after surgery due to the inability to eat I was out longer than expected, but booby was feeling much better!!

Friday, June 6, 2014


I decided to expand my blog and shift the focus.  My Enterra Therapy has been great, I am not 100% cured, but I would say that it is fairly well managed, I have good days and bad days, but more good than bad now :-)

In general though, my body has been falling apart from all my chronic illnesses and I want to reopen my blog in a new light looking at the struggles I face daily with my diseases both physically and emotionally.

I have Ehlers Danlos Syndrome (EDS), Fibromyalgia, Gastroparesis (full GI tract paralysis), Bile Dumping Syndrome and Dysautonomia.  The main illness being EDS, which precipitates all the other issues that I have.  I have always known in the back of my mind that I had EDS, but I never really cared to get it diagnosed because it was never the worst of my problems, I was always just focusing on my gastroparesis and dealing with my weight loss, malnutrition, dehydration and vitamin deficiencies.  Once I got that under okay control through Enterra, my EDS symptoms really reared their head.  I finally saw a rheumatologist on Monday, she confirmed that I have EDS and in addition she told me that because I have had so many painful conditions for so long that I have developed Fibromyalgia as well, which is common in EDS patients.  The hardest part about facing my fears and getting a diagnosis is getting a secondary diagnosis of another incurable chronic illness.  Chronic means for the rest of my life, I will be in pain for the rest of my life.  I am 27, my joints burn, my muscles hurt, most days I wake up and feel like I ran a marathon in my sleep.  Just add on top of the dizziness, stomach problems, heart problems, etc. it can get overwhelming.  I think my avoiding the diagnosis I was believing that it isn't true, that I will get better at some point in my life, I was holding out hope that getting my gastroparesis under control would fix everything.  I mean, I have been sick forever, but I always held out hope that I could have a "normal" life one day.  The hardest reality to face is that life will never be normal, I will most likely not die, but eventually I might not be able to enjoy life anymore, I might get so disabled that I can't function, just becoming another drain on the disability system.  Believe me, I wake up every day and push myself to do as much as possible because I will never give up, but at the same time in the back of my mind I know that my body will eventually.  I think the worst part to me about having chronic illnesses is that my brain is still there, I am still smart, my mind is completely willing and always will be, but my body isn't.  My body is giving up on my brain, I never ever ever want to not be able to work, not be able to travel, not be able to explore, but it is a possibility that I won't be able to one day.  I also admit that this makes me a person I hate, the pain makes me frustrated and makes me lash out at people around me, makes me push people away because I don't want to hurt them, which is another thing I am trying to work on.  I wouldn't say I have the biggest support system, but it is hard to maintain support systems when I am so sick I can't even go out and enjoy time with the people around me because I don't feel good.  I push myself and hang out with my friends, but 90% of the time I am in pain or sick when I am with them and I try to hide it as much as possible because I don't want to be that person, I want to push through it and I don't want my disease to control me.  I am working on seeing a geneticist and a physical therapist and a functional medicine doctor, just to get as much treatment as possible to keep going forever, but I know my body can only take so much.  I have always fought and i always will fight until the day I die to live the life I want, fight the pain every day, fight the anger that the pain gives me, fight the lashing out from pain and fight as much as possible to live a life where it isn't all about how sick I am, but about how much I can enjoy the life that I have.

Tuesday, August 27, 2013

Vitamin Deficiencies and Progress

I apologize for not writing as of late, I have been very very busy!!  I started school again last week, which is my last year!! Finally!!!  I also have been doing pro bono research work on public health law and climate change.  Not to mention the normal items like work and taking care of my son!  I am pretty loaded down right now.

So first I will update as to what has been happening.  I actually have been more sick than usual as of late.  My GI doctor pushed me down to a phase one/two diet, which he said I should follow until things seem to stabilize.  I don't think though that my pacer is the issue, I am pretty convinced it is the implant in my arm causing this, I have always been sensitive to hormones and that thing does mess with my hormone balance, but my PCP doesn't want me to remove it just yet, she really wants me to talk to my GI doctor at my next appointment in the beginning of October to see what he says.  I am really hoping that this is just a phase that I need to work through or I can just get this thing in my arm removed and everything will be better.  It is hard to determine what is causing me to get so sick (nausea, vomiting, etc) because I got the implant in my arm about a week or two before my pacer implant.  I am actually getting more ill and more often than I was before my pacer.  The only reason I am convinced that it is the implant in my arm and the hormones is because I missed my period this month (no I am not pregnant) and I have been ill since then.  It is almost like once my body gets knocked out of that rhythm everything goes out of whack.  My PCP did give me some dissolvable Zofran because every time I feel sick and take my pills I would immediately throw up, so she is hoping that this will at least help take the edge off and not make me vomit!!  The dissolvable pills have never worked that well for me, but something is better than nothing!!  We will see what happens, but for now down to a phase one/two diet, which is basically a liquid/soft foods diet, I will upload the paperwork my doctor sent to me about it in another post, just so people can get an idea of what I am talking about.

On another annoying note, my PCP tested my vitamin D level because I have been struggling with this deficiency for years now and of course I am deficient.  The positive to it is that I am not as deficient as I have been in the past (although that isn't saying much because it is summer), but she did add another 2000 mg to my vitamin D dose per day.  This should help with how tired I have been lately.  I really should go get my other vitamin levels tested because I know potassium and B12 are always concerns too for most of us GPers, plus I know I have no calcium in my body because dairy has been off my edible list for years now.  It is always a battle, but hopefully we can figure out the cause of why I am more sick now and either up my pacer or take out this implant.  Then maybe I won't have to take a million vitamin supplements anymore and can eat a normal diet!  Plus be able to work out at the level I was able to before, a vitamin D deficiency really wears away at the muscles and heart, so it is always harder for me to work out when I am low.

I am going to end on a positive note here though, I have gained back two pounds, but since I have been getting ill again I have been just holding steady, which at this point is an accomplishment for me considering I had been losing about a pound a week before the surgery.  I always like to recognize the small victories because I know that it will take a while for everything to normalize, if things work out as planned.  For now though I am seeing the short term positive effects that I needed, now to figure out the more complicated aspects so I can be around to embarrass my son for many years to come HAHAHA

#gastroparesis #enterratherapy

Monday, August 12, 2013

Updates and Never Being Good Enough

So the surgery incisions seem to be holding stable, which is a good thing because I really don't want to have another surgery!!  In terms of nausea progress, I have been a little off in the last week, which is a little upsetting, but I hope it is just a passing phase.  I haven't really added any weight, but I also haven't lost anymore, so I am happy that I am maintaining weight.  I don't have another appointment until September, so we will see how things go until then.  So far though I like the progress, it is not 100%, but it is better than it was.

On another note I was basically told I was not good enough or unloveable because I am ill.  It is really hard for me to take because that has been my whole life, I have never been good enough, nobody has felt that I was loveable.  It is like I had no chance, I was born with this, I never had a chance.  If someone can't love me now because I am sick, then nobody could have ever loved me.  I always knew this because I have never really felt like anyone really loved me, I almost died twice, I almost always go into surgery alone and people complain if they have to pick me up from a procedure that I cannot drive after.  Some days I almost wonder why I do keep fighting especially when I know that I will never be good enough for anyone.  Some days I just want to hide and escape from everything.  All the hurt and pain emotionally that I feel because of this pushing people away makes it hard to justify fighting.  I continue to fight, but my hope and faith is dwindling fast, I am just getting tired.

#gastroparesis #enterratherapy

Friday, August 2, 2013

So Thankful

So I wasn't sure which blog to post this on, so I will be copying it to both.  A year ago I went to the emergency room in Henderson, Nevada for what I thought was minor dehydration, it ended up being the scariest and clarifying night of my life.  The doctor told me that I might not make it through the night and that I may drop dead on the plane home the next day.  I was there alone.  Six months before that I was in and out of the hospital dying from malnutrition due to a dead gallbladder that went undiagnosed for three months.  The last time I went in they didn't think I had much longer because I couldn't even drink water and lost 30 lbs across the three months with about 10-20 mainly in the last month.  I felt like death, I felt how close I was and most of the time I was alone in that as well.  In the past year I have recovered to an extent, I do have permanent damage from the misdiagnosis and my heart problem will never be gone, but I am so grateful and thankful for the doctors and nurses who were there for me.  I am sitting here with my pacer now, hoping it will fix some of the residual issues, but it will never be a guarantee.  I can tell you though that I am so thankful that I wake up every single day and face the challenges that life puts in front of me.  It has never been easy and some days are really a struggle for me to keep fighting, but there is no way I am giving up.  With all the ups and downs I have in life I will always be grateful for every day that I am able to tell my son I love him, enjoy the weather, take a breath, even if I can't really eat much, be able to eat some delicious food, spend time with all the people I love around me.  Death and the threat of it puts what is important in life into perspective.  It isn't anything I would wish on anyone, my health life has been miserable, it is painful and you lose complete control, but I feel like it was the most humbling experience of my life.  Life is finite, if you don't love and live your life like any day will be your last, you will miss out on all the best things in life.  I choose not to be negative or miserable anymore, I choose to enjoy the life God gave me and live it to the fullest.  Take pleasure and joy in everyday because you never know when you all of a sudden lose an organ to death, your heart suddenly fails, I never ever expected these things in life, but they did happen and helped me immensely.  Love everyone as much as possible, find the good in life and not the bad, do things you were always afraid to do because that opportunity, that person or you could be gone in an instant.  Life is short and finite, not everyone lives to be 90, I am part bionic now and I wouldn't have it any other way because it helps me live to see another day, love another person and cherish every single moment.

#Gastroparesis #EnterraTherapy