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

 

 

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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″

Hello 2015 : )

First of all I want to wish everyone a happy New Year (and a belated merry Christmas!)

My last blog post probably warrants an explanation, so I’ll do my best to make sense of things : )

I was having constant blurry vision for about 3 weeks. Since it didn’t seem related to my migraines we made an appointment with my old primary (I have yet to meet my new doctor). She agreed it might be medication related, and said to try going off my Topamax and reducing my Metformin. Going off 2 medications at the same time probably wasn’t the best idea! Now we aren’t really sure which medication was causing the blurry vision, or which one gave me the severe withdrawal symptoms. Since I was on Topamax for years I’m guessing that the withdrawal symptoms were from the Topamax. The Metformin, however, was a new medication, so I’m guessing that the blurry vision was from the Metformin. It would be unusual I think to suddenly develop a side effect from the Topamax since I’ve been on it for years with no problems.

Anyway, as I went off the meds I started having severe anxiety. By severe, I mean SEVERE. I was shaking, throwing up, having diarrhea several times an hour (especially at night) purely from the anxiety. I have never felt fear so strong in my life. All I could think about for a week straight were my worst fears. I don’t mean spiders, or the dark, or the monsters under the bed, (although I admit I’m afraid of those things too). No, I’m talking about the fears that constantly live in the corners of your mind, whether you acknowledge them or not. The ones that quietly torment you during the day, and then crawl out of their hiding places to eat you alive at night. For me those are all fears about the future, or my perceived lack thereof.  What if I never get better? What if my dad dies since I can’t take care of myself? What if I never get married? What if I never make real friends again? What if I get better and manage to make friends, but then become homebound sick and loose them all over again? Can I keep enduring that kind of loss? What if I loose my sanity completely? What if I’m never able to do anything good with my life? What if I spend the rest of my life feeling lonely and worthless? And probably the worst of all – What if God abandons me too?

God spoke to me everyday that week in my devotions, and in a teaching at the end of the week too. We almost didn’t go to the Bible study. I wasn’t feeling good. My dad was tired. It was miserable out. It was a long drive. I sat there during the study resting my head on the table, doing my best to hide the occasional shaking, and hoping that I wouldn’t have to make a mad dash for the bathroom. But the message was the same as it had been all week. “Trust Me. Wait on Me. Even though its scary. Even though everything seems impossible. I am in control. I am faithful. I will never leave you. Don’t consider your present circumstances or your physical limitations, nothing is impossible for Me.”

I really hate it when people say “God will never give you more than you can handle.” That week was definitely more than I could handle. I don’t know about you, but sometimes God needs to break me. Not only am I cowardly, but I’m incredibly stubborn. Trust me, its not a good combination. I hold on to my fears with an iron grip. I’m “stubbornly afraid” if that makes any sense. God broke me that week, but it was the good kind of break. He simultaneously showed me how powerless I am, and how faithful He is. I finally said “Ok God, I give up! I’m not the one in control, You are.”

Since that week I’ve been feeling good. Really good. My vision is back to normal. My migraines are much milder than usual. My vomiting is gone and we were able take out my feeding tube, and my motility has improved enough for me to eat some solid food. My POTS symptoms are manageable. My sensitivity to flashing light is much better, so much that if it continues I might get my learners permit. Most of all, I have energy. For those familiar with the spoon theory, it feels as though I’ve gone from a handful of spoons a day, to more than I could be bothered to count.

Maybe going off the Topamax and reducing the Metformin made me feel better. Maybe It’s a normal fluctuation as my symptoms tend to ebb and flow. Or maybe this is God, and He’s just been waiting for me to surrender to Him. I don’t know whats going on, or how long this good spell will last, but I’m praising God and I intend to make the most of it. Not a bad way to start the new year!

Luke 1: 37 – For with God nothing will be impossible.

Prayers please!

Going off two of my meds at the same time because of side effects, and now I’m having some nasty withdrawal symptoms. Severe anxiety, shaking, vomiting/nausea, diarrhea sometimes several times an hour. Prayers would be really appreciated, this is living hell!!!

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.

Tubie Backpacks

I got stopped today in Lowes by a lady who asked about my feeding tube backpack. She said she had a relative with an LVAD who carries her equipment in pouches around her waist, and was looking for something more comfortable and practical. She wanted to know where I got it, and what kind of medical supply companies provide those types of products. I told her that I’ve come across bags for almost everything when searching online for feeding tube backpacks, but I couldn’t think of any websites or companies off the top of my head. I didn’t think to give her the link to my blog either, which was stupid of me, but maybe someone else who is doing a similar search will come across this post. : )

This is my favorite website, and the modified backpacks they sell are suitable for feeding tube or TPN pumps.- http://www.trendytubies.com/

Interestingly, on their about page they mention that their daughter has Autonomic Neuropathy (a form of Dysautonomia)!

Someday I might buy one of their backpacks, perhaps when my current backpack begins to fall apart. I really like their quilted ones.

This is really the only website I found selling bags for LVAD equipment.- http://lvadgear.com/index.html 

LVAD shirts, tank tops, or vests seemed to be more popular, which have special built in pockets.- http://www.mediwear.com/lvad-shirts-poly-lycra.html

This guy even suggests using holster shirts, which have built in pockets meant for firearms and ammunition, which just so happen to be the right size for LVAD batteries, he gives links to a few suppliers.- http://superdadsalterego.wordpress.com/2012/01/06/lvad-tips-resources-holster-shirts/

I also did find some handmade bags on Etsy and Ebay. However, if you want to go the handmade route, consider modifying a bag yourself! Its easier than it sounds, I promise. When choosing a backpack or purse to modify, make sure the compartments are the right size to hold your equipment. You may need to add clips or velcro straps to hold things properly in place. You may also need to make a hole for tubes or wires to pass through (the easiest way is using a large grommet.)

I took some pictures of my current backpack as an example.

WIN_20141116_184358Notice the clip near the top that my formula bag hangs from.

WIN_20141116_184525The velcro strap that holds the pump in place.

WIN_20141116_184748And the hole that allows the tubes to pass from the back compartment, to the front.

For anyone with a portable feeding tube pump or IV pump, a backpack or a purse should be easy to modify. I realize that LVAD equipment is much different and backpacks may not be suitable, but a messenger bag, purse, or fanny pack might work. Get creative!

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.