Surprise!

Its been a long time since my last post! I’ve been so busy, and so much has happened. As always I mean to sit down and write, but other things take priority, and sometimes blogging just gets tossed to the side.

To start… I met the love of my life last summer!

Andrew and I met in the most random way, (a friend’s sister’s graduation party), and have been together for 5 months now. It honestly feels so much longer. From the moment we met, Andrew and I were instantly comfortable like long lost old friends, and he is definitely the answer to many of my prayers.

at-the-beach

13765893_859406330870789_5282073113195475686_o

I never thought I would find a guy (christian or otherwise) who wouldn’t be put off by my health problems… but Andrew doesn’t seem phased in the least by my medical history. He takes everything in stride, and is constantly caring for and encouraging me both physically and spiritually. He makes me feel 100% safe and comfortable, even though most men terrify me so much that I struggle to talk and make eye contact. And whats more, he has lived right around the corner from me for years.

I’m simultaneously in awe of God’s planning, and ashamed of my own disbelief. While I admit that I’m still struggling spiritually, seeing God’s faithfulness in bringing us together has changed my perspective alot. ❤

My health has been “manageable-ish” since my last post, but I had an unexpected problem last summer shortly after meeting Andrew. (We had only known each other a couple of weeks at the time, but he handled it like a champ.) Basically… I started have swelling of my throat, tongue, and glands under my jaw. Trigger foods seem to be mostly dairy, red meats, nuts and seeds, chocolate, potatoes, and “junk food” of any kind.

I made an appointment quickly with my allergist who ruled out food allergies, ran some other tests, and concluded it was most likely mast cell related. She added 2 doses of zyrtec to my singulair and claritin, and I also take benadryl if i still manage to wind up with throat swelling. I have epi-pens available too, although thankfully I haven’t had a reaction severe enough to need them yet.

However this has caused a new problem, all those anti-histamines make me feel exhausted. Sometimes I really struggle to get through the day, and eating “high energy” foods for energy (my old stand-by) doesn’t seem to work anymore, instead it just makes me gain weight like crazy lol. Caffeine helps, but as I’ve mentioned before on this blog, caffeine is a nervous system stimulant and can be risky for POTS/Dysautonomia patients. I’ve accidentally had too much in the past and was extremely sick for days following, which makes me nervous about using it, especially on a daily basis.

It doesn’t help that I’m feeling extra pressure to be “functional,” because……. I adopted a horse! Not only does she need care, but I can’t afford to call in sick to work, I need every hour I can get, regardless of how i feel.

14570480_925645467580208_2452698393514010536_n

That probably sounds really random to you guys (my handful of readers lol), I haven’t talked much about horses on this blog, but long story short, I’ve been in love with horses my whole life. I grew up riding and always wanted a horse of my own, but pretty much gave up on the idea when I became sick in my teens. I was too sick to even ride, let alone have a job to pay for a horse. I put it out of my mind, and pretty much forbid myself to think about horses while I was sick, it was too painful to think about yet another dream that wasn’t likely to ever happen.

Much to my surprise, my health started getting better a few years ago. I got a job, and have managed to keep it through the relatively mild ups and downs of my health. I started riding again, and decided that I wanted to get serious about having  my own horse. I know in the back of my mind that my health may someday crash, and I could loose my ability to work and therefore own a horse, but I don’t want to take this time for granted either. Right now i have the opportunity to live my dream, and I want to take it, even if it doesn’t last forever. I ended up falling in love with an ex-race horse named Ray, and adopted her from a local rescue, planning to hire the trainers at my barn to help with with re-training her since I don’t have the experience….

14600903_925645414246880_3326717332239815472_n

However there have been several hitches to my plan….. first, the barn manager raised his prices dramatically only days after I had her trailed to the farm. Second, she has proved to be much more difficult to work with than my trainers originally thought. (She is hyper-sensitive to her surroundings, spooking at every tiny strange object and noise. She is too busy panicking and is too distracted by her own anxiety to pay attention to me or my trainers.) Third, my med related fatigue lately has been making it extremely hard to get to the barn. She is very sensitive and even the slightest change in her routine upsets her. We are starting to think that she is not a realistic match for me, or our family. Even my trainers are struggling with her and are both surprised, frightened, and frustrated.

screenshot_2016-12-14-12-09-52-1

I’m heartbroken, but am considering taking her back to the rescue soon. This just isn’t working. She’s not a bad horse, she wants to please and tries really hard, she’s just too anxious to settle down and pay attention. She’s going to need much more professional training than we can afford, and will need a more consistent rider than I can be when my health goes up and down. Its a hard decision to make, especially around the holidays. 😥

I hope everyone has a good Christmas, and Happy New Year!

Save

Save

Its been a busy summer!

I know its been a while since my last post. I feel like so much has happened, but I would sit down to write, and just didn’t know what to say. I had some bad vertigo this morning and had to call in sick to work (I’m still a bit dizzy), So I figured I might as well get a blog post done while I’m stuck here on the couch.

Physically I’ve been doing great for the most part. My blood pressure dropped randomly a couple of weeks ago.

Low bp 8915

Also there were a few weeks mid summer when I started throwing up, but it was probably migraine related because I was overdo for my shots. That’s about it.

Working at Lowe’s is going great, and the managers are always understanding when I’m not feeling well (migraines, tachycardia ect), or need help with something. My plan was to look for a full time permanent position in the fall, but then I decided to enroll in a distance learning Vet Tech program through San Juan College. (Classes start today!) My dad isn’t thrilled with my decision, he thinks I’m rushing things and need to slow down. Maybe he’s right, but after years of  feeling “stagnant” and being unable to make any progress with life, it feels good to rush a little bit. I was even able to secure an internship in a vet clinic, since my dad and I are friends with the vet! (The internship won’t start till spring or summer 2017.)  I don’t think that I can handle working full time and taking college courses, especially since I come home with migraines and just want to rest after an 8-9 hour day at work. So I applied and got a part time job in the paint department! I love it, mixing paint is fun, I’m basically getting paid to play with colors, and I get a good arm workout in the process. I have a lot to learn though, there are so many different products and brands, all with different purposes, and most customers don’t even know what they want. They just hand me a paint chip or something to color match, and say “I want this.” Then we have to play 20 questions to narrow things down, and I have to nag the department manager or other employees with questions to make sure I’m doing the right thing. Hopefully I’ll get better at it with time, there’s just so much to learn and absorb.

Of course the downside to working part time, is that I’m broke. I love horses, and I was hoping to start 1/2 leasing, or saving to finally have a horse of my own, but even if i could manage to work full time and get my schoolwork done, I wouldn’t have any time or energy left over for a horse. It will have to wait till I’m done with school (if my health holds up). Maybe if I’m lucky I can still keep taking riding lessons once or twice a month, I don’t want to stop riding completely and get rusty.

My driving lessons are going pretty well too, and I’m hoping to get my license soon after my birthday. I’m turning 21 in a month, and it would be simpler to just wait till after my birthday since insurance rates change, and they need to issue a new driver’s license. There are still times when I feel uncomfortable driving (especially when I have migraines), but I’m trying to be thankful that I’m able to drive at all, even if I need to be cautious or follow restrictions.

I even managed to get time off this summer for a vacation, and we went to visit my best friend. Neither of us were feeling our best physically or emotionally, but we made the most of it.

20150804_171344

20150804_165109

20150807_110525

Speaking of emotions, my mood is what I’ve really been struggling with this summer. I’m having problems on and off with severe anxiety and depression, and I’m not sure whether its hormonal, or mental, or spiritual, or maybe all three mixed together. It does seem to change around my cycle, which gives me hope that its hormonal and I haven’t gone completely batty. At the same time, I don’t respond well to birth control, metformin, melatonin, prozac ect, so If it is a hormonal or chemical issue, I don’t know what to do about it. I tried licorice root (active ingredient glycrrhizinic acid), which can raise blood pressure (good for some POTS patients), and lower testosterone and estrogen which can stabilize mood. It worked well for about 3-4 weeks, then stopped working and I weaned off it. I also tried L-theanine, and SAM-e, and both help, but I try to save them for my worst days and emergencies, because if I don’t want them to wear off and stop being effective.

Its gotten so bad that I’m afraid to be home alone, and my dad and grandparents finally said yes to having a dog. I adopted a pit mix earlier this month, and it was the best decision I ever made.

jack1

Most people don’t realize why we adopted him, they assume he’s just another pet. The truth is he’s my “emotional support” dog. He’s my child, best friend, boyfriend, and therapist all rolled into one. The ironic thing, is that I’m his “emotional support” person. He’s definitely been abused, but we don’t know much about his history. He’s nervous and jumpy, especially around men. The vet thinks his first owner used him in dog fights (or at least attempted to). He has bite marks all over his ears, face, neck, chest, and front legs, a broken tooth, and a chunk missing from his ear. My dad thinks he’s been beaten too, he’s terrified of anything you carry in your hands, even if its something harmless.  Sometimes he’s the one who needs comforting, and it snaps me out of my negative mindset. Suddenly I need to be the positive and reassuring one.

Be prepared to be spammed with dog pictures in all my future posts ; )

20150815_190520

 

The last one is from this morning. I fell down in the living room from the vertigo, and Jack wouldn’t stop licking me and pushing me with his nose till I crawled over and got on the couch.

jack2

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!