I didn’t know fatigue came with an age requirement….

So…. I’ve been feeling pretty miserable since my last post.

24/7 migraines combined with nausea and vomiting, extreme fatigue, and another POTS flare. (This time with low bp on top of the tachycardia.)

If I’m being honest, the worst part is the fatigue. We’re talking deep down bone tired. “Can barely stay standing” tired. “Don’t give a rats A** about anything” tired. “Would volunteer for a coma” tired. Fatigue that I can’t even admit to my friends, family, and co-workers, because apparently I’m “too young to be tired.” Admitting that I’m tired only results in a series of lectures where all I can do is smile and nod, because I know I “look” healthy and they don’t understand.

too young to be tired.

I tried some drastic diet changes with no luck. (Mostly high carb raw vegan meals which used to help with fatigue in the past). I tried increasing my iron and B vitamin supplements. I also cut way back on my activities and exercise so that I could rest and save my energy solely for going to work. Nothing I normally do for fatigue is working, and I confess that I’ve gotten very desperate.

Desperate enough to start playing with monsters. Specifically….. caffeine during the day, and when necessary alcohol at night.

I call caffeine and alcohol “monsters,” because both interfere with nerve function and are typically forbidden in patients with nerve disorders. Caffeine is a stimulant which speeds up the chemical reactions between nerves, and is also a vasoconstrictor. Alcohol is the opposite, a depressant which slows down nerve reactions, and is also a vasodilator. I can speak from personal experience that caffeine is dangerous for patients with Dysautonomia/POTS. If I accidentally have too much, I crash and have disruptions in every major bodily system, and it can take weeks for me to recover. I don’t know what happens if I have too much alcohol, because I haven’t crossed that line yet, and I don’t ever intend to.

I’ve found that my current tolerance for caffeine is about 10mg. The same amount found in 1 cup of decaf coffee, or 1 Hershey’s chocolate bar. However, I need something more reliable than snacking on chocolate throughout the day. We looked for low dose caffeine pills, and couldn’t find any! The lowest dose we found was 100mg, most are 200mg (the same as 2 cups of coffee), or higher up to 400+mg. Then by luck we found these caffeine “mints” at GNC. Each are 20mg, and can easily be cut into 10mg halves. If I take one half roughly every 2 hours throughout the day, and it gives me enough energy (or at least the illusion of it) so I can get through the day. I’ve found that because it’s a vasoconstrictor, it also helps raise my low bp, reduces my blood pooling in my legs, and hides my joint and migraine pain!

It comes with side effects though…. The caffeine raises my heart rate and makes my tachycardia worse. It also seems to increase my sensitivity to light, noise, smell, and touch. The noise sensitivity in particular is a big problem since I cut my hair to a pixie, which means I can’t wear earplugs without other people noticing. I definitely wasn’t thinking about that when I got my hair cut, BIG mistake on my part…. and now I’m planning to grow it out to a bob or “lob” as soon my roots finish growing in.

Alcohol is pretty much the exact opposite of caffeine, and I’m also very sensitive to it. I use it as a sedative at night when I have a migraine so painful I can’t sleep. I mix 1-2oz of wine with 4oz of fruit juice, and it both sedates me and cuts down on the migraine pain so I can sleep. However, it also drastically lowers my bp and hr. Especially if I have it on an empty stomach, it can make me feel very dizzy like I’m about to pass out. So a word of warning I guess to other POTS patients…. if you have low bp and want to try wine, start small and have it with a BIG salty meal!

On top of my “experiments,” my primary wrote me a prescription for Scopolamine patches, to help with my nausea and vomiting. I don’t tolerate anti nausea meds by mouth, so the patches were the next best option, and I definitely recommend! My meals lately tend to be bland, chicken, eggs, rice, plain veggies, ect… but I’m keeping most of them down.

I’ve also increased my protein as much as possible to help build muscle to control my POTS, since I don’t have the ability to exercise regularly right now.  I’m still having blackouts on a daily basis, but at least I haven’t lost any muscle tone.

Anyone else have suggestions?!!

 

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Upswing

I’m happy to report that I’m feeling much better since my last post. Gosh it was months ago, I always mean to sit down and write a post, but I end up spending 5 hours on Pinterest instead. Not even kidding, I’m a major Pinterest addict, it sucks the life right out of me.

Anyway, right after my last post I got my hair chopped to a pixie. It was the next day actually, I couldn’t stand the asymmetrical thing, it looked awful. The pixie looks 100 times better, but to be honest, I still have mixed feelings about it.

20160428_102453

I’ve had a million compliments on it, from friends, family, coworkers, customers at work, and even random strangers. I still miss my long hair though, and I don’t like the way short hair looks. Every time I see a girl walk by with waist length (or longer) hair, I instantly feel jealous.

However, I admit that chopping my hair has significantly helped my migraines. I’m still having them on a daily basis, but they tend to be less painful! Sometimes lately I don’t feel any pain at all with my migraines, I only have the secondary symptoms. (Secondary symptoms are things like dizziness, nausea/vomiting, light and sound sensitivity, auras, ect.) My migraines can still be severe, obviously, but at least they are not painful.

What I love most about having a pixie though, is that it is low maintenance. At the most I might straighten my bangs and thrown in a bobby pin before I leave the house, but that’s it. I don’t have to waste precious energy on my hair when I’m not feeling well. I used to easily spend an hour or more on my hair everyday, just trying to find the least painful way to put it up… now the most I might spend 3 or 4 minutes on my hair in the morning.

My blackouts and tachycardia are much better too… (not because I cut my hair, don’t be silly), but I started swimming again to build muscle like I used to do in physical therapy. My plan was to take some swim classes at our local community center so that I could be closely supervised by an instructor in case something happened. Unfortunately, I couldn’t find any instructors that were willing to deal with my crazy work schedule though. So I just went to the pool on my own, and got started.

It was REALLY difficult at first. The hardest part was just trying to breath. At first I had to keep my head above water at all times, because I was breathing so hard from the tachycardia. I couldn’t put my face in the water and rotary breath like most swimmers do. In fact I still struggle to rotary breath, even now that I’m feeling much better, but least I can do it for a couple of laps!

The most effective swim exercise (in my opinion) for POTS, is just using a kick board. By holding onto the kick board, it keeps your head above water at all times so you can breath, and all the kicking as you swim back and forth helps to build serious muscle in the lower body. (For those who don’t know, building muscle, especially in the lower body, is very effective in controlling POTS. As your body builds muscle, it also builds new blood vessels and nerves which improve circulation and help prevent the blood from rushing to your feet when you stand up.) Not to mention, it makes your legs and butt look good! (Just saying).

After about a month of swimming 2-3 times a week, my blackouts stopped and my tachycardia and shortness of breath are barely noticeable. I’ve been able to go back off the Propranolol, start using ladders again at work, and start horseback riding again!

Anyone else tried swimming for POTS? Lemme know how it worked for you!

This isn’t a crossroad.

The last couple of weeks have been a shock to me. I’m not even sure how to process whats happening. Long story short… I got the job! I also finally got my diploma! So within a week, God provided me with a car, my high school diploma, and an awesome job. One after the other like dominoes. Part of me feels like I’ve been waiting for this for so long, and now its finally happening. And part of me feels like I’ve been launched back into life at warp speed with no time to adjust.

Not only did God provide me with a job, but He provided the “perfect” job, considering my physical limitations. I spend most of my day watering and pruning flowers, helping customers, restocking shelves, and cleaning up around the garden center. Its fun, and cheerful. Its physical enough to enjoy since I love being active and on my feet. Staying active is the only thing that calms down my mind and silences my obsessive worrying/intrusive thoughts. But its not so physical that I’m making myself sick everyday trying to keep up.

The managers and other employees are kind, friendly, and understanding. They are happy to work with people who have disabilities. Even though I haven’t submitted any paperwork through my doctor, they can usually tell if/when I’m not feeling my best. They are happy to help me when needed, and understand if I need to take it a little slow.

There is a mandatory 1 hour lunch, plus optional breaks, which are great when I’m not feeling well as it gives me a significant amount of time to sit and rest to get my strength back.

Also, it pays better than I expected, and its very close to home (which is important if I’m not feeling well at the end of the day and don’t feel comfortable driving a long distance). I was able to get regular hours too, which are convenient for my dad since I don’t have my license yet.

I spend most of my time outside, but being inside doesn’t bother me either since the store itself is huge. I can’t quite explain it, but it doesn’t take much to make me feel trapped. Open spaces allow my mind to calm down, relax, and breath.

The almost constant social interaction helps too, in ways that I can’t explain either.

I can see God’s hand of provision all over this job. Last year if someone told me that I would be feeling better and have a car and a job, I would laugh and say they were crazy. There were so many obstacles…. blackouts/absence seizures meant that I couldn’t drive. Lack of energy, debilitating daily migraines, dizziness, and vomiting would prevent me from having a job, especially a full time physical one. God promised me last year that He could do the impossible, and I’ve been holding on to those promises for dear life. Hoping for a miracle is one thing, but seeing God perform miracles right in front of my eyes is very different.

I should be praising God and leaping for joy! And part of me is. The other part is still cowering in the corner, waiting for the carpet to once again be ripped out from under me.

I was hoping that my mind and emotions would instantly heal once I entered the “real world” again, but it doesn’t work that way. The guilt, fear, pain, and doubt are still here, threatening to eat me alive every night when I drop my guard and crawl into bed. I don’t notice them much while I’m at work, being active calms my mind and allows me to focus on the tasks in front of me. But they consume me as soon as I come home.

Hannah (my best friend who has also been sick for many years) and I have repeatedly talked about chronic illness and PTSD (or Post Traumatic Stress Disorder). I know what you’re thinking… and no, I haven’t been in mortal combat. I haven’t killed anyone. I haven’t watched people die, or witnessed unspeakable violence.

But I have been sick for 6 years. I’ve had everything and everyone I care about ripped from me, repeatedly. I’ve spent years in solitary confinement. I’ve had to relearn social skills, like body language and conversation. I’ve had friends, family, and even doctors turn their backs on me. I’ve gotten better, only to fall sick again and again. I’ve spent countless days puking my guts out, and countless nights crying myself to sleep. I’ve developed OCD, depression, and anxiety. I’ve struggled with suicidal thoughts, and things that I can’t even talk about about. I have nightmares every night, some of them are so vivid I never forget them. There are places that I’m terrified of, because they cause flashbacks of fear and pain. My life for the last 6 years has been a constant stream of negative events, and my mind and emotions are stuck in a loop of fear and negativity. I’m perpetually in fight or flight mode, bracing myself for the next threat to come around the bend.

This isn’t normal.

I’m not normal.

I’ve been to hell and back.

I’m not ok.

When people meet me, they have no idea what I’ve been through. They have no idea about the mental and emotional war I’m fighting everyday. They treat me like any other normal, sane, healthy human being, and they expect me to act accordingly. So I put on my make up. I do my hair. I smile. I act confident and happy. I put up the wall that they expect to see, and it usually works. I feel safe there, behind my wall. But just once, I wish someone could understand. I wish they could see though me, and tell me that they’ve been here. I wish they could tell me things will get better, that someday I’ll heal. That someday I won’t have to fight anymore. I’m tired. I’m confused. I don’t know where I am. This isn’t a crossroad with its convenient intersections and street signs telling me which way to go. Its a tangled mess, I’m being pulled in every direction, and it hurts.

“The LORD will fight for you; you need only to be still.” -Exodus 14:14 NIV

 

 

He is Risen!

I hope everyone had a good Easter! Mine was exciting… I went to church, talked with my friends, had a big dinner with my grandparents and some of my aunts, uncles, and cousins. It was nice to talk and actually participate in the conversations, whereas sometimes I am either not feeling well, or just too shy to speak up.

Things have been going pretty well. I’m on a 1/2 dose of the Florinef, and I had some blackouts and tachycardia as we adjusted the dose, but things seem to have leveled out. I think my heart races when I stand up more often with the decrease, but its not bad.

I got my first car! Its a 2003 Subaru Forester, and I’ve quickly fallen in love with it. Its much easier to drive than the van my dad has been teaching me in, and it feels like a perfect fit for my small body. Sometimes it feels surreal when I’m driving, I was afraid that I would never be able to drive or have anything resembling independence. Even just having my own car keys is mind blowing to me, being able to see them and hold them in my hands.

Car2

I love that the interior is tan, not grey. I’m finding myself hyper sensitive to colors (along with music, lighting, tv shows, ect.) I’m still struggling a bit with my mood, and I easily slip into a state of depression, especially in the evenings. I’m not sure if its hormonal, as my blood tests have been off recently. Or perhaps I’ve lost my mind. I’m afraid that I’ve been irreparably damaged from being sick and isolated for so long.  I’m afraid that I’ll always be struggling to find happiness and purpose, even if my health continues to improve and I’m able to have a normal life again. I’m afraid that even if my “dreams” come true, I get a job, make close friends, get married, have a family… That I’ll still being crying myself to sleep at night. Feeling worthless, ugly, dirty. My feelings are so complicated and I can’t sort them out. I’m trying to find the source of these feelings, so that I can correct the problem.. but I can’t. Its not just one thing, or one event that caused them. They’re all tangled together like spaghetti, or like the roots of plant. So instead of fighting to untangle them, I’m trying to set the mess aside and focus on God. It feels like I’m constantly at war with my mind and emotions, and its exhausting. I’m so tired of trying to figure it out.

I’m excited to say that I have my first job interview at a nearby Lowe’s in the morning! My cousin even helped me pick out an outfit. I’m trying to hold on to the positive things, and praise God for all the blessings He is giving me. I’m really hoping to get a job as soon as possible, I think that being out of the house, being around people again, and doing something productive will allow my mind to begin to heal.

Inspirational Christian Easter Quotes

How do I stop flinching?

So last week I had my blood drawn to check my hormone levels, after one month of being off the Metformin. We got the results a couple of days ago, my insulin is high again, and hormone levels are a mess. I’m frustrated… the Metformin did its job and regulated my hormones, but the side effects were unbearable, and going back on it is not an option.

My dad did some research on Florinef (a corticosteroid) which I have been on for 5 years now (along with a beta blocker) for my POTS. He found that with long term use Florinef can cause high insulin levels, and my new primary agreed that it was a possibility. Maybe my recent diagnosis of PCOS is false, and this is really a side effect of a medicine not meant for long term use. She wants me to see an endocrinologist and my cardiologist, and my main concern is that I will have to reduce or go off the Florinef. I depend on the Florinef to keep my blood pressure up, if go off it, I might start blacking out again. If my POTS symptoms get bad again, that would really limit my options for working. Perhaps I could be a secretary, or a cashier (if they allow me to use a stool so that I can sit when needed). If anyone can think of alternative jobs, please comment and let me know your ideas, I would really appreciate it!

I’m not sure how I feel about this… If I go off the Florinef, my hormones might return to normal, but my POTS could get worse and limit me to a job that I hate. Or… my hormones could continue to get worse off the Florinef, in which case we will know that its not the medicine and I can continue taking it to control my POTS. I could have a more enjoyable job! But there’s no telling what will happen if my hormone levels  continue to get worse. Mood problems? Weight gain/weight loss? Severe menstrual cycles? Hair loss? I really don’t know much about this area, and it scares me. Right now I’m feeling great off the Metformin, despite my screwy hormone levels, but I can’t just ignore a potentially serious medical problem.

On the bright side, my driving lessons are going great! Hopefully I’ll be able to take the road test by summer time and get my license, and even get my own car!

We noticed that a large garden supply store had a help wanted sign out front, so I applied for a job. I haven’t heard from them yet, but it was a huge milestone for me just to even submit an application. If they don’t hire me, there are several other stores that I can try in the area, or I could even get a summer job at a farm stand. Ok that probably sounds boring to you guys, but I like healthy food, and I like the outdoors, I think I would enjoy it.

My volunteer “job” at the barn is going great. I really get along well with Linda, who owns the farm, and its wonderful being around the horses. We already decided that I can’t handle a paying job, I’m not physically ready for that kind of hard work, but a few hours once a week isn’t a big deal. I want to keep volunteering as long as possible, its sort of the fulfillment of a childhood dream, even if I don’t get to ride. It brings back happy memories of my horse crazy days.

I’m trying my best to trust God, I feel like getting better is a “two steps forward, one step back” kind of process. Its scary, Its frustrating, I don’t like being blind about the future. Always bracing myself for whatever is coming just around the bend. The worry I feel is like a self-preservation instinct, its my way of “flinching” to protect myself from unseen threats. However, like flinching, it doesn’t do much good to protect me. Sometimes the blows come, sometimes they don’t, but there’s nothing I can do by worrying to protect myself from the punches. Why is letting go of my need to control so hard?

“Fear is not real. The only place that fear can exist is in our thoughts of the future. It is a product of our imagination, causing us to fear things that do not at present and may not ever exist. That is near insanity. Do not misunderstand me danger is very real but fear is a choice.”
― Will Smith (After Earth).

Now hope does not disappoint…

This update might be a little overdo, but the last few weeks have been pretty stressful. Long story short… I decided to go off the Metformin completely since I was still having some side effects, primarily mood swings. I went through another week of brutal withdrawal. More anxiety, depression, vomiting, diarrhea, shaking… Even after the week was over, it took a while for my mood to stabilize and to get my appetite and strength back.

It was another eye opening experience, and I have come to fully believe Romans 8:28:

And we know that all things work together for good to those who love God, to those who are the called according to His purpose.”

In my opinion, depression is a form of insanity. Or at least it can be, the kind I experienced certainly was. It was like the world around me wasn’t “real.” It felt like living in a dream-state, where nothing I do, or see, or touch is real. Even the little things that I normally enjoy like watching tv, listening to music, taking a relaxing bath, or eating a piece of chocolate, Its like they wouldn’t register with my brain. They didn’t exist. They weren’t really happening. They were empty. If anything they made the depression worse as I realized how empty those things were and that they couldn’t comfort me. During that week the only real thing was Jesus. The only thing holding me together, giving me hope, and anchoring me to reality was Jesus.

There’s some irony in that, at least from a worldly perspective… That God… who I can’t physically see or physically touch… is more real to me than the tangible things around me. The things that I can see, and the things that I can touch. To a non-believer that doesn’t make sense. But to someone who has a personal relationship with God… who has felt His presence, who has seen Him answer prayers, who knows that the things of this world are empty, and has their hope fully in Jesus Christ… they know exactly what I’m talking about.

God spoke to me over and over that week, not only through the depression itself, but through His word. The most important message being that I’m looking for joy, fulfillment, and satisfaction in all the wrong places. I need to get my eyes off myself, and off the world around me, and back on Him. Only He can satisfy me, only He can comfort me, only He can give me the peace, and joy, and sense of purpose that I’m looking for.

There’s a reason that I run to Him when I’m in pain.

I know who my Master is.

I know that the things of this world are empty.

God also convicted me that I need to be in His word more. Reading a daily devotional and going to church a couple of times a week isn’t enough, not if I want a deeper relationship with Him. I need to be reading His word everyday, listening to worship music (instead of worldly music), and listening to teachings online or the radio. I need to be careful what I watch on tv, what I read on the internet, and what I may or may not be allowing to pollute my mind.

God reminded me of His promises. That He has a plan for my life. That He will finish the work He started in me. That all things work together for the good of those in Christ. That He is all I need, and He will never leave me or forsake me. That His grace is sufficient for me. That He can, and will, do the impossible in my life. That I don’t need to be afraid.

The truth is that I inadvertently asked for this “trial.” I’ve been struggling with fear and hopelessness for a long time, and I’ve been praying for God to break me of it. The thing is, I wanted it to be easy. I wanted God to just reach down and magically take the pain away. Unfortunately, God doesn’t work like that. He molds us and shapes us through trials, like a potter molding clay. I’m blown away (again) by God’s faithfulness, and His ability to take something horrible (like medication withdrawal), and make something beautiful come out of it. I know that God has used the last 6 six years to help me grow spiritually, even though at times the pain seemed pointless and things didn’t make sense.  I’m excited, and nervous, and curious about God’s plan for the rest of my life. I’m trying hard to let go of my fear about the future, and my “need to know.” I don’t need to know the future, because God is already there, and He will help me get through it just like He always has.

Jeremiah 29:11

 For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope.

Romans 5:3-5

And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope.  Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us.

Psalm 119:36-37

 Incline my heart to Your testimonies,
And not to covetousness.
Turn away my eyes from looking at worthless things,
And revive me in Your way.

Psalm 119:71-72

It is good for me that I have been afflicted,
That I may learn Your statutes.
 The law of Your mouth is better to me
Than thousands of coins of gold and silver.

Psalm 116: 7-8

 Return to your rest, O my soul,
For the Lord has dealt bountifully with you.

 For You have delivered my soul from death,
My eyes from tears,
And my feet from falling.

NKJV

I’m finally graduating!!

This is a celebratory post! I finished my last online course today, and now I’m waiting for my final grade so I can get my GED.

I’m also studying to get my learners permit, and we are working on selling my pedal harp so that I can get my first car!

Last week my dad and I visited a nearby lesson and boarding stable.. I asked if I could start volunteering there (doing barn chores) to hopefully work towards getting a paying job. They said yes and I start (tomorrow) on Thursdays. Hopefully we will be able to work out another day so that I’m at least at the barn twice a week. In addition to gaining experience and references for a paying job, I want to see how my body handles the physical work. I’ve also been exercising daily to try and build up my strength and endurance. For those who don’t know me well, I was horse crazy growing up. I secretly still am horse crazy, although I tend to keep it to myself lol. Off and on when I became sick sometimes I would fantasize about what it would be like to ride again, work at a stable, or maybe even own my own horse someday. It seemed impossible that I would ever be feeling well enough to handle the physical work and stress, so this opportunity feels surreal.

I’m excited but also impatient. Part of me is terrified that this “good spell” is only temporary, I’ve had the carpet ripped out from under me so many times that I believe it’s traumatized me. I want everything “NOW,” just in case months or years down the road my world comes crashing in again. I’m trying to remind myself that I’ve been sick for a long time and need to have patience with myself. Rushing into things too quickly could backfire.

For example last weekend my dad and I went to a Prophesy Conference at a nearby Calvary Chapel church. It focused many topics such as the purpose of prophesy in the Bible, how Israel fits in to prophesies about the end times, the many prophesies that Jesus fulfilled, and creationism. There was even a messianic Jew from Jewish Voice Ministries who talked about how he got saved, and the Bible in general from a Jewish perspective. It was very good and my dad and I enjoyed it, however on the second day of the conference my dad and I went out to eat at a restaurant during the lunch break. I ordered what I thought was grilled chicken, but it turned out to be fried and battered. Annoyed, I picked off as much of the breading as possible and tried to just eat the chicken. I also had some potatoes with unknown seasonings, and I ate most of a piece of pie. My stomach felt funny for the rest of day, but I thought I was going to get away with it. Then the next morning I drank 1/2 a protein shake for breakfast and immediately started throwing up and having severe stomach pain. It was Sunday morning, and it was my turn to help out in children’s church, so I was really upset when my dad had to call and let the pastor know I couldn’t make it. For a little while I was terrified that somehow I had triggered a relapse by eating some questionable food, but I’ve been able to eat and drink fine since the incident. Hopefully I learned a lesson and I’ll be more careful with what I eat, even on special occasions.

It reminded me of how important it is to stay in touch with my doctors, even though I’m feeling relatively good at the moment. I met with my new primary recently and I was impressed! She reminded me alot of my old primary, she was kind, patient, and took the time to really listen and let me explain when necessary. She said that she has other patients with autonomic dysfunction, and she was willing to go out of her way to research my symptoms. My new GI doctor on the other hand has been rude and unprofessional, and despite his promises, we haven’t heard from him since our last appointment months ago. We are going to try again to find a new GI, since truthfully I’m still struggling to eat. I’m doing well off my tube, but I can only handle eating 1 meal a day, the rest of my diet needs to be liquid. If I try eating 2 meals a day my gut becomes sluggish and everything stops moving, even when I do my best to eat healthy, stay hydrated, and take an embarrassing amount of laxatives daily. Even if a new GI doctor doesn’t have any ideas, I want to keep in touch just in case things get worse.

I didn’t mean to leave things on such a negative note… Honestly I am feeling good, and I’m excited about suddenly having all these possibilities in front of me! I’m praying and trying to give these fears to God. I’m not the one in control, and worrying won’t gain me anything.

Which of you by worrying can add one cubit to his stature? -Matthew 6:27″

When appointments go south.

When my new GI doctor walked in the room this morning, the very first thing he said was – “I don’t think this doctor/patient relationship is going to work, and it might be time to terminate.”  (This is our second appointment).

Apparently my dad and I didn’t leap for joy when he entered the room, and so he deduced that were putting up barriers and being uncooperative. I had a migraine and probably didn’t look too chipper. I explained that I wasn’t feeling well, and my dad tried to communicate how difficult it was for me to even walk into the office that day. The doctor just didn’t seem to get it, and also claimed that in our first appointment we were totally against doing more testing or trying new medications, and that is not true! (I was cautious, and explained that Ive already had XYZ test done, or tried XYZ meds. He did suggested some new meds and I was very interested in trying some of those.)

After much arguing the doctor moved on… and said that he reviewed my records and some information was conflicting, and that no one really seems to know what is going on. Unfortunately this is true, none of my GI doctors in the past had a good understanding of Autonomic Dysfunction. I’ve also had several diagnoses in the past like IBS and Lactose Intolerance that turned out to be false.

My new doctor doesn’t seem to have a good understanding of POTS or Dysautonomia either, and questioned my diagnosis of Autonomic Dysfunction. He acknowledged that I have POTS, and that I have proof since I failed both my Tilt Table Tests, but wasn’t ready or willing to connect my POTS and GI symptoms. He reasoned we have proof that one part of my ANS is malfunctioning, that doesn’t necessarily mean that the part controlling my GI tract is malfunctioning. Technically this is true, and not all POTS patients have GI problems. However, if one area of the ANS is malfunctioning, likely other areas are malfunctioning too. The majority of POTS patients complain of a wide variety of symptoms. Migraines, GI problems, sleep issues, and temperature sensitivity/regulation are probably the biggest and most common categories. If he had done even a quick internet search on POTS he would have quickly seen a correlation between POTS and GI problems.

There was more arguing, shouting, and maybe a few swear words involved.

Today he told me he went over my records and my motility studies in the past were all normal, (we explained all of this in my first apt), and he wants new motility studies done. He wants proof to justify writing for prescriptions, tube formula, and scheduling me for a J-tube surgery. I understand his point of view, but in my case a motility study is not going to give him the proof that he wants… On a liquid diet everything tends to move through fine. My GI doesn’t become sluggish unless I eat solid food over a period of several days. Over this time my GI tract becomes increasingly sluggish until things stop moving altogether. When this happens my motility problems can be so severe that I eat things and vomit them up 24 hours or more later. All of my motility studies in the past were normal and done on a liquid diet, or after being thoroughly cleaned out with laxatives so that there is no food in my system causing it to be sluggish. I offered to attempt to eat food for a few days before the test (not an easy task with my vomiting), but he said no and he wants to see how my GI track behaves without any interference from an obstruction (such as being backed up with food). Again, I understand his point, but I already had multiple motility tests under the same circumstances. If he wants documented proof of why I can’t eat, there needs to be food involved!

After we explained the situation (again), he thinks I might be having lower GI motility problems, not upper. In other words my intestines become sluggish first, and once my intestines are backed up it causes my stomach emptying to be delayed. He is probably right, it seems to happen in that order when I try to eat. I also asked if severe constipation could cause the same problem, and he said yes. So in theory my motility problems could just be entirely obstruction related.

He offered to call my previous GI doctor (who diagnosed me with Gastroparesis), and depending on how the conversation goes he will schedule me for an upper motility test and a J-tube surgery. If the upper motility test is normal (which it will be), he said he will focus on my lower GI and that will help indicate which medication he should prescribe. I’m unsure of whether he will agree to continue writing my prescriptions or schedule a J-tube surgery if my motility tests are normal. I told him that my nose bleeds frequently from the tube (it also sometimes gets swollen, and I may have a sinus infection.) If I need to take the tube out I will get dehydrated quickly and be in the emergency room. He didn’t seem to have a problem with this.

He did tell me that he believes me about my symptoms, and that I would have to be crazy to tolerate having a nasal tube if I didn’t need one. I’m hoping that he won’t write me off, or delay the J-tube surgery for too long.

My dad and I don’t know what to think. On one hand he has some good ideas as far as treatment options go, and has suggested things that no other doctors have. He insists that we should never “settle” and stop trying to make progress when it comes to managing my symptoms. The points he makes are usually logical, although sometimes ignorant or uninformed. He is eccentric, loud, pushy, unprofessional, and rude. At the same time he seems to care about me and is willing to go out of his way to help me.

Sorry this post is so scattered, I still have a migraine, it took all day just to write and fix the spelling errors.

This Isn’t Fair

I know I just posted yesterday, but I had a rough night. I got to sleep around midnight, and then woke up at 5-ish in the morning with a huge wave of anxiety, nausea, and butterflies. Obviously it was not OCD related, since I was sleeping when it started. My dad and I now believe that I am having adrenaline rushes again (an old symptom I haven’t had in years). Now some of the extra anxiety I’ve been having over the last few days makes more sense. Sometimes it starts even when I am calm, or when I am completely distracted by a project and therefore not struggling with OCD thoughts.

I’m not sure how I feel about this. On one hand, maybe I’m not as crazy as I originally thought. That’s a good thing right? On the other hand, I’m already struggling so much with OCD, and soon I know I’ll be struggling with cabin fever too. Winter is approaching quickly, and I will be stuck indoors constantly because I can’t tolerate the cold. I don’t need adrenaline rushes too. Adrenaline rushes feel like a whole new level of cruelty by my body. They either cause me to feel panicked for no reason (so I have no outlet or focus for my fear). Or they can make my pre-existing OCD attacks much worse. Not to mention that adrenaline stimulates the nervous system and makes me very sick, similar to the way caffeine makes me sick.

Adrenaline rush = a roller coaster ride minus all the fun.

Half Past Dead

These last few weeks have been worse than usual, in more ways than one.

My health seems to be going nowhere fast. We saw my new GI doctor a couple weeks ago, the good news is he seemed to know what he was doing, had some new ideas to try, and overall I was really impressed. Unfortunately he didn’t receive my records so he was unable to do anything, and we will have to wait till my next appointment.

My POTS seems to be getting worse, I’m having more trouble standing, and sometimes my tachycardia is very uncomfortable.  Even picking something up off the floor can leave me gasping like a dying fish from the tachycardia as I stand back up. To avoid this I’ve taken to picking things up with my toes monkey-style, but this only works at home and when I don’t have socks on.

My chills and hot flashes seem to have gotten worse, and I swing wildly between them throughout the day. This has led to me being extra strict about how I dress so that I can quickly cool off or warm up depending on my body’s ever-changing thermostat. For the moment this means no pullover sweaters or pullover hoodies, since they are a pain to take on and off with my NJ tube in the way. (I have to stop my feeds, disconnect, change, and then reconnect.) For the same reason no T-shirts either, which are usually too warm during a hot flash and so I have to take them off. My everyday uniform is a pair of long pants, a tank top, and sweater or shawl that I can quickly take on or off.

My migraines seem to have gotten a little worse, probably along with my worsening POTS. Simply standing and walking around the house can be enough to trigger a migraine, and 5 days out of the week I wind up with a migraine by noon.

Mostly though I don’t care about any of the above. Whats bothering me is kind of complicated. My OCD has gotten worse lately, and despite my best efforts my obsessive thoughts and fears dominate my thoughts. I’m completely stressed out from the nightmares that play over and over through my head all day. Horrible things that I could never explain to another person. I’m depressed. I’m angry. I want to take out my pain on something. Going for a run would be amazing, but I know I’m not capable of that.

I seek distraction constantly from the moment I get up to the moment I go to bed. I’ve begun avoiding sleep. I wait until I’m drop dead tired and could literally keel over any second before I go to bed. That way I fall asleep instantly before my thoughts have a chance to consume me. Then in the morning I try my best to get out of bed as soon as I wake up. No matter how tired I am, its better than laying there half asleep while my obsessive thoughts rip me to shreds. Lack of sleep probably isn’t good for my physical health, but right now I feel like my mental health is more important. Besides, sometimes my efforts are futile and I end up taking naps in the middle of the day.

I feel like being sick has stolen everything from me, even the possibility of friends, and most of all my sanity. I’m angry, I’m hurt. I’m tired. Isn’t the physical pain of being sick enough? Why should I have to suffer through this emotional, mental, and spiritual pain too? I want to hate God and blame Him for allowing this to happen in my life. At the same time God is the only solid thing I have left to cling to. I can’t balance these emotions. They don’t belong together. How can I hate God and love Him at the same time? How can I doubt Him and trust Him at the same time?

All I want is to be normal.

And to sleep. Sleeping would great too.

“Why can I never go back to bed? Who’s is the voice ringing in my head? Where is the sense in these desperate dreams? Why should I wake when I’m half past dead?” Emilie Autumn