coping mechanisms

While coping mechanisms can be great things and I believe God has allowed us to be capable of having them and maintaining them with the idea being we really focus on Him. God is after all the Best coping "mechanism" (yes, I know He is not a mechanism but words aren't happening right now.) The way I deal with my life is to try not to even think about "what I am missing out on", "what I should be doing at this point in life", "everything that I can no longer do" and that kind of thing. Live in the hour because the next hour everything can change. Well, that's fine and dandy eventually you cross a line. If you don't allow yourself to "go there" then you don't grieve that loss in a slower, normal fashion and EVERYTHING hits like a freight train when you do let yourself go there for even just one minute. That is where I stand right now and grieving all the losses at once is a lot harder than one at a time; somewhere in this journey I became a genius and pushed everything aside to get through day to day struggles and refused to face the realities of my situation and now it's not so fun. My mind has been overwhelmed with how far in the "wrong" direction I have come in about the last year and it is flooded with things like hmm I wonder if I will ever be able to drive car again or go to a store and not feel like puking and passing out and I think I will just have to live with my parents for the rest of my life so that's cool. Seeing beyond these things is very hard because it has been 8 months now since I got sick and these things haven't changed much and at least for now there is no answers as to when or if all or some of these things will occur again and in what time frame. A year? 2 years? I just don't know but I miss them all right now. Getting in my car and driving somewhere has become hard to even fathom anymore considering if I turn my head too quickly I get dizzy. 8 months later and judging by the fact that if both of my parents go somewhere I require a babysitter since I am not supposed to left alone it just doesn't seem like much is going to occur in a timely fashion and I like timely fashions. A lot. Please pray for acceptance, peace, and patience as I trudge along here one day at a time and I have some big doctor's appointments coming up that need prayer as well. This Monday 8-4-14 at 4:00pm I have an appointment with a GI doctor that works closely with a neurologist at St. Claire that specializes in autonomic dysfunction and the prayer is that they will figure out what my puking issue is and fix it and I would you know prefer that to be without getting diagnosed with anymore diseases or disorders which is a possibility. I see the GI Monday and the Neurologist I can't see until September 30th but hopefully and prayerfully these two very precise specialists will be able to give me some answers on what my body is really doing and some treatment options.

pawn and wait

I am stuck playing this game of musical doctors. Again times 5,000. I went and saw my GI doc today and he really doesn't know what is making me so sick. We are doing an abdominal CT scan on Friday and I have to drink contrast at 7am. Yeah have someone who can't keep anything down drink 24oz of contrast an hr before the test and then drink more right before it. Mmmhmmm this is logical. Please pray that I can drink it and keep it down! This stuff tastes a kind of horrible that can't be explained. if this CT scan is normal it is probably related to my nervous system disorder. The nerve that tells your stomach to move food onwards can malfunction and cause all of my current symptoms. He said it is likely to be the nervous system but he wants to rule everything out and he doesn't really know anything about autonomic dysfunction so I would have to seek treatment somewhere else for that Today has sucked anyway, all I want to do is go to sleep and wake up and be healthy again. I'm tired of going to bed not knowing what symptoms I will have when I wake up. I am so tired of being pawned from one doc to another because you don't get help that way, all I want is someone to help. That's all. So pending a normal CT I will be finding a new Dr. That knows about this condition and making an appointment that will probably be months away since it's such a precise area of study. pawn and wait is my life right now and I am not going to deny it sucks big time. Kind of like hurry up and wait while you get sicker and sicker. At some point in all of my health issues I hit a breaking point, well, today my breaking point has been reached and I have had to really reach out to God to do whatever He is going to do because I broke and gave up my fight. I give up. Fortunately God doesn't and today shall pass and a new one will begin and who knows God might have something up his sleeve and will renew my strength, peace and hope. If nothing else He is still right here walking this path of darkness with me and for that I am thankful.

Cardiac Rehab

I have started doing in home cardiac rehab to re-condition my heart and wow is it a reminder of what this syndrome has done to my body. I am still absorbing the limitations that I am supposed to follow which are not really realistic to life. I am only supposed to walk short distances and was told no more than 30 ft at a time. (yes, 30 ft) That is near impossible so when discussing it with my physical therapists she said if I HAVE TO walk more than 30 ft then I need to sit down everytime I reach that 30 foot mark or if that's not plausible then I must have a CANE with me so I can stop and shift alot of my weight onto the cane. we also discussed my need to leave my house on occasion and my desire to return to church and be around people which would no doubt be more than a 30 ft walk, sometimes by far and I was told that I can do those things like go shopping or go to church but only in a wheelchair and a transport one as well so I wouldn't be the one doing the work to move it, someone would have to push me. If I didn't feel old before I sure do now. I'm approaching 90 with the cane and wheelchair, just wait until I end up with a walker! It might help if I explain a little bit about cardiac rehab because it is so different than most rehabilitation areas. It is judged off of two scales: one being your rate of exertion and the other being your vital signs but the rate of exertion is the primary one used. Everything that we do in our sessions has to be "light and easy", if it becomes a little bit hard it is mandatory to stop because at that point you are doing more damage than good. Each time there is a sitting warm up where I like move my ankles and bend my knees and little things like that as a way of telling my heart ok I am about to get up and do something so you need to actually be pumping then I. Can get up and walk. Sadly, once I reach 30 ft my exertion goes from light and easy to a little bit hard so that is my walking limit for now. After the walk we do a cool down reminding my body hey we are stopping by doing similar little exercises that I did in the warm up. In a normal person all of these things that I must prepare and intentionally tell my body happen instantly and automatically without a second thought but mine no longer does that and through this slow slow slooooow process we are teaching it to do that again. It is all a little overwhelming and the fact that I now require a cane and a wheelchair at 22 is a kind of discouraging but God knew my body would loose it's marbles and I just have to accept that this is just how it is for the time being and obey when I have to use a cane or a wheelchair whether I like it or not.

You are the only one

Lord, let Your kingdom come/ Who can right every wrong/ You are the only One/ Who can calm every storm/ You are the only One/ You alone are Father, Savior, /Spirit, Healer, Redeemer/ Lord of all/ You are the only One/

prayers and praise

People have been asking me for specific things they can pray for so I though I would put it here but first and do have a few praises to share so I will start with that: 1. I don't have congestive heart failure that they said could be a possibility in the hospital. Yay for no transplants!! 2. I am so blessed to have the parents I do that go above and beyond without one complaint. 3. I finally got set up with an in home cardiac rehab lady who knows all about this specific program I am supposed to follow. 4. I have the best friend and roommate ever who is packing my stuff for me since I'm rarely there and tire easily. 5. I was introduced to a fb group for people who have POTS in St.Louis and it is so nice to know you are not alone and to be able to ask questions and get support from others who have it. PRAYERS 1. If I could stop throwing up despite 4 nausea meds it would be great. 2. That my allergic reaction to the tape that holds my port in place will calm down. 3. That I will be able to get in and see my GI Dr in a timely fashion. 4. That I will truly learn to lean on God as this journey drags and wears me down emotionally. 5. NO MORE passing out issues because that just feels awful when it happens. 6. That my migraines will waft there way out of my brain. 7. Lastly,my long QT interval that showed up on my EKG when I was hospitalized will go away because that along with the fast heart rate basically means my heart is racing and then pausing altogether then racing again (and repeat) which could be dangerous. I hope this gives everyone a better idea of what is going on and what you can be praying for.

uhh what?

Sometimes I just find myself praying to God and asking "what are you doing here?". I just don't get it. I don't ask why because well why not but I do struggle with what His plan in all of this is because all I can see is I lost my job and it's unknown if or when I will be able to work again, I'm loosing my rental house and forced back into my parents for an unknown amount of time, I've lost my freedom to drive and really just kind of lost my freedom in general. Ummm God, what are we doing?! I am pretty sure this is going the opposite direction in life and we might just want to flip it around. My little human perspective can't see beyond this and even pondering the future is near impossible because it is really just a black hole to where I can't even take an educated guess. Everything leaves me asking what. What are you doing with my life?! I sure don't know but fortunately we both aren't clueless and You know exactly what you are doing even though it seems wrong to me. Trusting God has always been a struggle and this new trial is no exception, I still don't understand, I still doubt at times, I still get frustrated and try to push God away, nothing in my sinful nature has changed since I have faced all of my past trials but what I have done is learned from the past, now I know Your plan for me is flawless and I can fight it or accept it and accepting it is so much easier. "My heart and flesh may fail The earth below give way But with my eyes, with my eyes I'll see the Lord Lifted high on that day Behold, the Lamb that was slain And I'll know every tear was worth it all"

ok days

Don't get me wrong I am so very grateful for an ok day today but in a way ok days are the hardest. I feel good enough to realize how much my life has changed. I never imagined I would be back in a medical crisis again but God has other plans. I don't understand them but I trust the one who gave me life to begin with. Emotionally, ok days give me a chance to really realize how much I have lost and how I got to this point in life. I'm not going to sugar coat it, it has been a long, hard journey thus far and it is far from over and I just want to be done.I have lost so many years of my life and some of the best years included and I want to be a productive member of society and work again and enjoy my 20's, not spend them going back and forth to and from hospitals. I want to live not just exist. For now, I have to surrender to what I want and let God lead in my life no matter how hard that is because looking back doesn't change anything so forward I go with some nights filled with tears for what my life has become and hope for what God has in store for me and how He will use this time in my life to glorify bring himself glory. One foot in front of the other I go.

heart update

Good news....I'm not in heart failure! I do have another heart issue called long QT interval though. (pfft always something) What that means is my heart is beating crazy fast and then taking a big pause then going crazy again. It is caused by medications usually so they will be adjusting those and some of my electrolyte levels came back low last night so they are giving me those IV. The plan is still to release me today but it probably won't be until later tonight after they have done all of those things and a pulmonary function test.

good times

I knew my body was complaining since Tuesday but I ignored it because with pots you just never know what is too little or too much for your body to handle. It is all a risky guessing game. Each day I felt worse so I took it easier as that is logical and I fully expected my body to go right along with it and calm down and everything would be peachy. Yeah, my body had other plans. Early Saturday morning I started to feel really bad and was so weak any movement would make my heart rate shoot up and my oxygen drop. my oxygen was then consistently in the 80's so my parents and I were in my room debating on what to do and I decided that I have to go downstairs at some point so my dad got me standing up and I was leaning against him as my body went numb and when my legs began to buckle I decided that it is not going to happen and sat back down when all of a sudden I lost my hearing and then passed out. When EMS arrived my Bp was 70/50 and they used a chair with tracks on it to get me down the stairs to the gurney. My Bp has been low on and off and my cardiac enzymes are moderately elevated showing some damage to the heart but I have yet to see my electrophysiologist and find out what her thoughts are. I don't get the feeling that they are too worried about my enzymes but I have heard congestive heart failure thrown around a few times and since I have been having chest pain and vomiting today I don't know what they are thinking. Really, I don't know about any of it. I am completely worn down and trying really hard to stay in good spirits and keep my sense of humor in tact to push through along with a lot of prayers because this is beyond old.

ablate everything?!

My CNS has been loosing it all week thus making me feel like death and I fully admit to my female crankiness that follows that. Walgreens is about to get to really experience that in all it's glory if they can't figure out how to run a business. My mom was like escorting me out yesterday as I was seriously pissed and at one point I might have said something along the lines of wanting to kill people, ya know, the norm. I would never. We didn't wait around to test it though. Probably for the best really. yesterday, I had muscle spasms going on and looked like I had turrets. I was telling my dad it is my nervous system misfiring and we proceeded to discuss cardiac ablations and he asked if you could ablate your nervous system. I feel like that would not go so well. You can't just go around like oh, kidney failure, let's ablate it! Oh stupidity, let's ablate it! (if only) there is no real "treatment" to cure what I have. A cure for POTS and Autonomic Dysfunction would be great but it hasn't been found yet, it is all about managing the symptoms throughout your whole life. Great fun. My current prayer requests are: 1. My appt on Monday with my new neurologist to discuss Botox treatments for migraines 2. My appt on Tuesday with my GI about my nausea. I wake up with it at 4am, 7am, and 9am and then proceed to deal with it the rest of the day.

calm before the storm

My ok day preceded a downhill spiral. I am so much more thankful for that one day since my nervous system has decided it wants to go crazier than it's everyday crazy causing muscle spasms, heat intolerance (oh Missouri), intensified nausea and more! The symptoms of Dysautonomia are compared to that of a traumatic brain injury and a spinal cord injury, sounds fun, right?! So, when I get up to walk sometimes my sense of balance is totally off. I feel like I'm walking like a newborn giraffe in an attempt to get my knees and ankles to lock up a little more. Basically, I am currently a newborn giraffe that has brain damage and a spinal cord injury, if that isn't attractive I don't know what is!!