Sunday, July 30, 2017
Essential Oils and Natural Medicine
In January of 2016, I was pulling out chunks of my hair regularly. I had daily horrific muscle spasms, fell often, and was in extreme pain. My body shut down and tried to reject my medications that I needed to live. I stayed on the basic meds, but was not able to take anything for the pain or nausea. My stomach also refused nearly all food, reducing me to eating nasty, unhealthy things just to keep a calorie count up. I existed on white bread, small amounts of cheese, occasional milk, and that's about it. Fruits and vegetables caused seizure-like episodes and blackouts followed by severe stomach cramps and frequent vomiting. My service dog Riley was working overtime and was getting worn out by the sheer magnitude of her duties. I was looking forward to a wedding (mine) in June and starting a new life with my husband in December. And here I was in January, unable to climb five stair steps without crying due to the pain. I was unable to work and had to move in with my parents while I waited to join my husband (we're military...there's a lot of waiting).
My mother sat me down and told me that I had to work while I was living with them. I was shocked until she told me what she meant. She told me that while I was living with them, she expected me to fight for my health and she was going to do everything she could to support me in that fight. She told me my job was to see as many doctors as I could and try as many things as I could while I had a safe place and people to look after me should something go wrong. With her unwavering support, I contacted my primary care doctor and demanded that I get referrals.
After several failed specialist visits, I got referred to a rheumatologist who remains one of the single greatest doctors I've seen. After doing a thorough exam during which he dislocated every joint in my body and put them back (much to Riley's disapproval) he told me quite frankly that I had the worst case he'd seen, there wasn't anything he could do for me, and that what I was going through was, and I quote, "a special kind of hell." I had loose joints and severely tight muscles. My entire body was convinced it was under attack all the time and was seizing up and refusing food and other outside things like medication because it perceived them as attacks. Any type of movement, even sitting up, was viewed by my body as a horrific event. He told me my body was in crisis and he didn't have any treatments that wouldn't make that worse. He then asked me how I felt about natural medicine.
I told him all the natural medicine I had tried was people telling me that yoga and prayer would fix me. He told me yoga is detrimental to people with my specific condition and that he wasn't talking about that kind of medicine. He set me up with an Integrative Medicine specialist at a local Cancer Institute. His honesty and referral are among the greatest gifts a doctor has ever given me.
I met with an Integrative Medicine Specialist who worked daily with people in severe pain with weak or no immune system. Bodies in crisis were her specialty. She was very honest with me and gave me a bunch of tips and inside information and recipes. I'll share her tips below. I began using Essential Oils, natural supplements, and massage therapy to help me get my health under control. Using what she taught me, I began what will be a lifelong journey to healing using natural medicine.
Information I got from the Integrative Medicine Specialist:
1. DO YOUR RESEARCH. Seriously. Research, research, research. NEVER take information you find on a website that sells you a product for fact unless you back it up with other research.
2. Just because a company says their oils are great, it doesn't mean they are. Again, do your research. You're looking for a 100% organic oil, but make sure it has a "certified" label. "Certified organic" or "certified therapeutic and/or medical grade" are what you're looking for. Young Living Essential Oils are fantastic for the average user, but not for someone who is looking to use them for purely medical benefits. (She didn't say anything about DoTerra, so do your research. And this was a year and a half ago and it is possible that YL has gotten medical/therapeutic grade oils since then. Refer to #1 on this list.) I personally use Wyndmere and oils I get from an apothecary in my current city. I'm lucky enough to have access to that apothecary. I did use some Aura Cacia oils for a bit, but found that their quality really varied from oil to oil and sometimes even bottle to bottle. If it's from Walmart or is a pre-packaged "bath," it's not medical grade.
3. Natural medicine cannot replace traditional medicine. Take your medications. Always.
4. Always consult your doctor before starting anything if you've got an underlying medical condition.
5. What works for one person may be harmful to another. Trial and error is the name of the game. And never take a full dose of anything to start. Start small always and work up.
6. Test oils on the inside of your forearm. Put a drop there and wait. If in fifteen minutes nothing has happened, you're probably good to use it (again, start with a small amount). If your skin swells up or turns red or a rash appears, that's a histamine reaction and you must wash off the oil immediately with cold water. Do not scrub or it will get worse. Discontinue use of the oil completely. If, like me, your body randomly rejects things one week and then not the next week, keep the oil around and test it again in a month or so.
7. Start slow. Start slow. START SLOW. If you find a recipe online or in a book or even from a doctor, cut it in half or even down to 25% and use that to see if you're going to be able to tolerate it.
8. Never start multiple treatments at the same time. Start with one thing, do it for a month, then maybe add another thing. The trick with natural medicine is to relax your body into healing. If you attack it with multiple things, it will see it as just that: an attack.
9. Start with aromatherapy. Then move on to topical treatments. Then go to the internal things like supplements, etc. Again, you're easing your body into a new way of behaving.
10. Try, try, try. It might get frustrating to buy something and then find out it doesn't work so it might be helpful to see if a friend wants to go in with you on buying oils or if they have some you can try in a small amount.
11. It will take months before you see any major benefits. The immediate effects (such as smelling peppermint for nausea) will be nice, but the major benefits of overall better health will take forever to show up.
12. Aromatherapy and all topical oils are like punching your brain in the face. You want your brain to react a certain way, so you smell or apply a certain thing. This one's confusing, so here's an example: You want your brain to stop sending you the signals that make you feel nauseous. You punch it in the face with extreme peppermint fumes. Your body says "OH GOOD HEAVENS WHAT IS THAT THING! THE ONLY WAY TO COMBAT IT IS TO STOP FEELING NAUSEOUS!" and shuts off the nausea signals. It's more scientific than that, but that's the basic idea. Another example would be using lemon for anti-inflammatory purposes. Your brain gets overloaded with the lemon and the lemon somehow tricks the brain into sending your body anti-inflammatory things. Thus, your body becomes less inflamed. Science.
And now things I have learned:
1. All of the above tips are essential (pun not intended) to the success of your treatment plan. Don't skip any of them.
2. Certain oils can sometimes "burn" the skin in high concentrations. It will start as a histamine reaction that will turn into welts that look like nasty burns on your skin. Always start with a heavily diluted concentration and work your way up slowly. If you think you've got too high a concentration of an oil by accident, it's better to throw your solution away (or drain the tub, etc.) than to suffer the oil burns. Been there, done that. Nasty stuff. Citrus oils are the most prone to do that.
3. Use a carrier oil for topical treatments. Carrier oils are what you dilute the essential oil in. Grapeseed, jojoba, coconut, and almond are the common ones. I like grapeseed because it's cheap and I'm not allergic to it. I personally don't use it in Med Baths, but others need it to dilute the oils in the bath.
4. So many oils can be used for so many different things. It's upsetting to try to find the right ones that work for you, but very rewarding when you do.
5. Different people swear by different carrier oil to essential oil ratios. It's basically a handful of carrier oil for every 3-5 drops of essential oils. Some people do more, some do less. It's what works for you and your skin and your body and doesn't harm you.
And now, a recipe for a Med Bath, straight from the Cancer Institute:
MED BATH
2-2 1/2 Cups of Epsom Salt
1/2 - 1 Cups of Baking Soda
5-15 Drops of Each Essential Oil (The type of oil depends on what you want the Med Bath for)
1/2 Cup of Sea Salt
Combine with water as hot as you can handle. Begin with only a five minute soak. Work your way (over several months) up to 15-30 minutes. Begin with only a few drops of oils. Work your way up to more.
(ALWAYS have a glass of ice water or even two handy, as you'll get dehydrated and feel awful after the bath. NEVER take a Med Bath when you are alone in the house, in case of fainting. NEVER take one before exercising or going somewhere. Plan to go to bed with plenty of water to drink afterwards. My healthy as a horse husband took a full strength one when he had a cold and was weak as a kitten for five hours afterwards.) (If you're getting sick, take one of the above baths every single day and your sickness will come on aggressively and then go away quickly, cutting your sick days down by over 30%. You'll be miserable for your sick days, but there will be less of them.)
If you just want a relaxing bath, 1 cup of Epsom Salt and add a carrier oil and use only 5-10 drops of Essential Oils. Or skip the Epsom Salt altogether. The Med Bath recipe above is only to be used by people who are sick (with a chronic illness) or are getting sick (like getting a cold or the flu).
Common Oils/Uses include:
- Lemon for anti-inflammatory and anti-bacterial, useful if you've got a cold or are getting a cold
- Cinnamon for congestion and sinus headaches
- Lavender for calming properties (personally, I hate lavender. But you do you.)
- Sweet Orange for anti-inflammatory and anti-bacterial
- Peppermint for nausea or pain
- Eucalyptus with Lemon and/or Peppermint for pain
- Frankincense for pain, sinus headaches, congestion, basically everything
- Myrrh for pain
My daily bath includes Ravensara, Copaiba, and Palmarosa for building collagen. Sometimes Peppermint or Frankincense is added in for pain. I add Vanilla and/or a bit of White Musk in it just because they make it more pleasant. I tinker with the intensity of the bath based on how I'm feeling and what I'm needing on any given day. You've got to find what works for you.
Hope you enjoyed my scattered yet informative post about my use of Essential Oils. Please comment below with tips and tricks and feel free to educate me on Young Living, DoTerra, or whatever brands you use. I'm always open to learning more!
Wednesday, July 26, 2017
Learning To Be Okay: Trauma and C-PTSD
Monday, July 24, 2017
Jeph Has Titled This Post: aAwwssde43333wea
Hey all. Time to read about my life again!
I'm on track to graduating with honors! I've gotten A's on every assignment so far and I'm beyond proud of myself. I've been working ahead when I can and letting myself take breaks during my flare days. I'm about a month ahead after I finish the section I'm currently working on. I've had several flares, but because my time management skills have been A+, I've been able to completely take that time off and just rest and recover and let myself breathe.
I've decided I'd like to become a Canine Good Citizen Test Evaluator. First, I need to work for two years with many different breeds and many dogs and then take an extra course through the American Kennel Club. In order to become a Therapy dog, dogs must pass the CGC test and in many programs, service dog candidates must pass this test as well. I think it's a good way to get involved with those communities while I save up money and time to do Service Dog Trainer courses and decide which organizations to look into.
I've been using what I am learning with Baby Jeph and he is responding incredibly well to it. I am very proud of the little guy and Ray is bursting with pride over both of us.
My sweet Riley started feeling ill a few weeks ago and I noticed almost immediately that something was wrong. She was growling at Jeph and sleeping all the time. She was also very reluctant to turn left and seemed to be almost hopping at times. We took her to the vet and my suspicions were confirmed. My little girl is starting to have hip dysplasia issues with her left hip. A surprise was that she also has a torn ACL in her right knee. She's on strict rest and no working for a few weeks while the knee heals and then joint supplements for life for her hips. Her right hip was a little swollen, but the left one has started deteriorating. Because of this, I feel like Jeph's training needs to take an even faster track. I'm not sure how long Riley will be able to work and I want to be able to go places with a Service Dog, as it does make a world of difference for me. It's honestly breaking my heart because I can't verbally explain to Riley that she gets to take it easy. She thinks I'm being unsafe in leaving her and asking her to rest instead of work. The looks she gives me are hurting my soul. She's honestly saved my life many times and I wish I could explain to her that I'm trying to return the favor. The good news is that the joint supplements have helped already and she's a much happier little girl.
I have a billion and one appointments with specialists coming up in the next month. Currently, I've finally found a muscle relaxer that helps me. It puts me to sleep, but I've been healing because of it. My new Internal Medicine specialist is absolutely fantastic and a dream come true. He found the muscle relaxer for me and has been attentive to all my needs and answered my many questions and phone messages promptly. He's also fought with my insurance company on my behalf...and won. Multiple times. He's my primary care doctor now so I'm in very, very good hands.
Speaking of that, my husband remains amazing. As if there was ever any doubt of that. He's always taking care of me and our fur kids (and now also our scaly lizard kid, Krit). I'm even more in love with him now than I was when I first fell for him, and even more now than our wedding day.
I let Jeph title this post. He did so by hitting the keyboard with his paw and dropping his Kong on it. Inspiring. Maybe I'll start him his own blog.
Friday, June 2, 2017
The Porch Theory
In my dream, I had a session with a famous therapist. Famous therapist's name was Sally or Susan or something like that. My brain isn't super original when it comes to names. Anyways, I was in her office with my husband and I was crying and telling her all about my life and talking about how nothing I'm doing seems to be working. She nodded gravely and told me it was because all I was doing was re-painting my porch. Stay with me, guys. This is where shit gets real. I was like, "This sounds like another mindfulness exercise that isn't going to help," and she told me that those exercises helped you recognize the chips in your porch paint and the other general wear and tear. What the heck, right? She gave me a workbook and told me I needed to do the homework before she saw me again the next day. In my dream, I went home and grumbled about having to do some more pointless analogy therapy that ultimately would do nothing for me. I then opened the workbook and what was in there was fascinating.
The Porch Theory is this idea that your life is built like a porch. (I need to add here that I am not a carpenter, have built stage set pieces, and am fully aware that what follows is not actually a good way to build a porch.) There is a poured foundation made of concrete. On top are four main support beams. Covering those are the long pieces of wood that make up the porch. Then comes the stain/paint and the decorations. Each part of the porch represents something different. The foundation is what your every action stems from. This is the root cause of everything you do. Then the foundation beams are the four main focuses your brain has. The long pieces of wood are your values that stem from those main focuses (which are influenced by the foundation). And then comes the paint/stain, which is the actions that you do and your outward symptoms, caused by the values which stem from the focuses that are influenced by the foundation.
In my dream, I did two written exercises. The first was to analyze my life starting from the paint and working my way back to the foundation. Then I labeled a diagram of my current "porch" with what I had written. This exercise took a long time, even in dream world. I ended up skipping around to the different parts of the "porch" as I tried to make sense of everything. The end result was me staring at this "porch," feeling as though I had been laid bare onto paper. My paint, the outward manifestation of my inward life, included like "people pleaser," "excessive apologizing," "panic and anxiety attacks," "sobbing," "anger towards my health," "shame over needing mobility devices, medications, etc," and "going to countless doctor appointments even though I know this doctor isn't the one for me." I could go on, but you get the point. The long pieces of wood, the values, were things like "religion," "putting family and friends above health," "getting the highest education possible," "being the best," "keeping a clean house at all costs," "forcing my body to stay healthy as much as possible," and "working a good job". The four main support beams were "Not wanting to be abandoned," "Not wanting anyone to regret being around me," "Not wanting to be a burden," and "Thinking everyone else deserves more/better than I do." My foundation was Fear and Worthlessness.
After I did this exercise, I found myself back in the dream therapist's office, sobbing and holding my husband's hands as I told her all about my porch. What could I do? This seemed like a horrible life I'd created for myself, and I felt hopeless about it.
She told me that yes, this is a terrible porch. It is, at its foundation, flawed. She told me that I couldn't expect a beautiful life when my thinking was all stemming from places of fear and worthlessness the same way that I shouldn't expect a porch with a nasty, cracked foundation and rotting wood to be an amazing place to have lemonade and iced tea during the summer with my husband. She told me it wasn't my fault that my porch is shit. She jokingly told me that with the life I've lived, she was surprised the whole damn house hadn't fallen apart. I couldn't stop crying. She got down on my level, looked me in the eyes and quietly asked me if I was ready for a new porch. I told her yes, but how the hell do I do that? She nodded solemnly and said, "Renovations."
She then had me do the second exercise in the workbook. The second exercise was, "Describe your dream porch (aka ideal life/values/etc.). My dream porch's outward appearance were things like "singing in the shower again," and "smiling," and "enjoying time with friends," and "happiness," and "baking" and "painting". My porch boards, my values, were made up of "Living in the moment," "Gratefulness," "Finding contentment," "Loving friends," "Relationship with husband," and others I can't remember right now. The four beams were "mental health," "healthy marriage," "physical health," and "hope." And the foundation? It was Self Love.
Sounds great, right? But how to get there? SallySusan the Dream Therapist was a little hazy on this one, but told me that every time I am having an outward symptom or thought that echoes the nasty porch, to think of the ideal porch and try to follow along with what I think that would look like. For example, if I find myself crying over how messy the house is, I should take a step back and realize that this comes from that gross foundation. I can then try to remind myself of how I want to be thinking. AKA, "Yes, the house is messy but it actually isn't hurting anyone and hey, isn't it great that husband and I have been resting and going places and having fun and yeah, we haven't had time to clean the house but look at all we've done this week!" or "Yes, the house is messy but it actually isn't hurting anyone and if it is, I can ask husband for help because I don't have to do it all by myself and it isn't horrible to ask him to help and we could play music and it could actually be fun!" or "Yes, the house is messy but no, you haven't 'done nothing' all week, you've taken all your pills on time and rested your joints and remember that one time you pet your dog? That was pretty awesome! And it's okay to focus on your health. Remember those beams on your dream porch? It's okay." She told me that I was going to need to go right down to the foundation and change it and then the other changes would follow.
My dream therapist told me that this was going to be nasty, messy work. She told me to think of it like any renovation. There will be setbacks. She told me that any time I experience a setback while working toward this "new porch" and feel like I'll never get there, to just think of it as a construction issue and forgive myself. There might be termites living in the wood of the porch, waiting to be exposed. The renovation crew might take unexpected holidays and leave me with a shattered mess to work around for weeks. Maybe there's some electrical wiring that needs to be replaced. Perhaps we'll get the porch built and realize that the foundation was never actually touched, the crew just said they did it and we have to tear the whole thing apart again. She told me that just as re-making a foundation for a house or porch is ridiculously hard and irritating, re-making a foundation for my life will be, too. And just like porches continually need weather-proofing, the occasional board replacement, re-painting, and other regular maintenance, keeping myself healthy will require constant work. But she told me to look forward to the days when I can sit out on a nice porch, sipping iced tea on a lounger next to my husband and watching the sunset.
Although it was a dream, I'm going to follow along with the Porch Theory and see if it works. Feel free to join me. If you'd like, you can share your own "Dream Porch" with me in the comments or on my Facebook page, Instagram, or Twitter.
Tuesday, May 9, 2017
Clouds
Part of the clouds parting is that after a sobbing fit, I fell asleep for 19 hours and missed some doses of a medication that I'd been put on a couple of weeks prior to my meltdown. When I woke up, I felt like myself. It was like a fog of awful had been lifted. I thought perhaps it was exhaustion, but it turns out that particular medication was making me worse. I stopped taking it under close supervision by my husband. Finally, I'm starting to be able to calm my brain and heal. I've been able to begin to convince my brain that it is safe here again.
I am now finally able to look at my mental health care objectively and realize that I am not currently receiving the care that is best for me. I'm starting the process of making a change to a different care team. The person who has been diagnosing me and prescribing medications for me is not an actual Psychiatrist. She is a Licensed Nurse Practitioner who works alongside the Psychiatrists at the mental health clinic. Nothing against Licensed Nurse Practitioners, but I need a Psychiatrist. She even has continually admitted that she has no idea what she's doing with me and is stumped by me. And I've found out that the medication that I've stopped wasn't even for any of the symptoms I've been experiencing. Also, the Psychologist that I've been seeing also told me this past week that she has no idea what to do with me going forward and that my symptoms are severe enough that they are out of her realm of expertise. So here we go, trying to get a new care team.
I had a three hour long, several phone call evaluation from my insurance. They're trying to get me enrolled in their Case Management program so that I can have someone working with me side by side to get all the specialists and referrals and help that I need. It was quite a depressing evaluation, as I had to go through all my symptoms and all my different systems and explain how and where and why they are failing. But after the phone call, I suddenly felt strangely empowered. No wonder I'm breaking down! No wonder I sleep 16 hours a day! No wonder I need a wheelchair! No wonder I can't do what everyone else can! Look at everything I deal with on a daily basis! Look at all I manage to do in spite of this! Look at how I can still drink water, take the dogs out, change the laundry, keep up with personal hygiene, and more. Sometimes, I can even make myself sandwiches or heat up leftovers. And you know, I'm going to go back to being proud of that. I'm going to work on being proud of myself again.
And speaking of being proud, I just looked up from my screen and my dogs are so proud of themselves because they found a rip in an old dog bed and have scattered the stuffing all over the living room floor. They are so happy destroying their bed. I hope they'll continue to be happy with they realize that they are responsible for that bed getting thrown in the trash.
Until next time, friends. Stay safe,
Sunday, April 30, 2017
Everything Is Grey
My Psychiatrist told me that I need to treat this like the flu. Lots of fluids, lots of rest, watch a lot of movies and TV, and be nice to my body. I bought a bunch of food that I usually love, because otherwise I can't attempt myself to swallow even one bite. My poor anxious stomach can't handle the idea of a full plate or even a half-full bowl of cereal. I've dropped at least five pounds in the past few days and it's not a good kind of weight loss. I've slept for over eighteen hours a day every day and I'm still so exhausted that my entire body is pretty much constantly shaking and I'm seeing double.
I won't go into what is going on in my brain simply because it is too triggering to me and to others who have similar issues. Let's just say it is hell and leave it at that.
I'm safe. I have 24/7 monitoring and I have to show my husband my pills and show him me taking those pills and I have an action plan and lots of resources when I need them. I say when, not if, because I 1000% need them. Believe me, this is not an "if" time.
My Psychiatrist also told me that I'm actively going through new trauma right now. I also looked up my medications and they're medicating me pretty heavily, apparently. It seems as though the combo that I'm on is used to treat some real nasty things. She looked at my eyes and saw me losing my mind sobbing and told me I need to get into intensive treatment as soon as possible. She called my insurance company and is working with them to get me into a Partial Hospitalization Program and a DBT program. She helped me set up the safety plan and the action plan and if those fail, she told me she wants me in the hospital. Right now they seem to be working okay, so that's nice I guess.
We had people over for a barbecue and it was actually really nice. Lots of laughter. I felt like I was playing the part of a happy person, but even that was nice. It forced me to take a shower and put on real clothes and talk to people. I didn't have any energy to do makeup or care about outfits or anything, but it was still good for me to try to interact with normal humans. It was exhausting, and I'll probably be more "sick" tomorrow, but I still think it was good for me. And it was definitely good for my husband to laugh and grill and tease and eat with his friends. He's been so steady and supportive this week, and it was comforting to see him let go and have a good time.
I'm wearing my new PTSD bracelet constantly. A local first responder makes these bracelets as a way of coping with his PTSD and as a helpful tool for the PTSD community. The beaded bracelet has a bunch of normal beads and one skull bead. The skull bead represents the trauma. The rest of the beads represent blessings. You're supposed to go around the bracelet, naming all the blessings in your life with each normal bead and reflecting on the trauma in order to let it go when you reach the skull bead. It's actually a rather helpful visual, as it is obvious that the skull bead is hopelessly outnumbered by the blessings beads. Even though it is horrifically difficult for me to name blessings right now, the act of forcing my brain to try to think of positive things is healing.
I'm not sure when I'll be writing another post. Thank you all for bearing with me with the sporadic posting of the past few months. I'm afraid I can't be certain of when I will have the energy to write again. Hopefully this nastiness passes soon, but everyone is warning me that it can last for a month or more. I think I'll run out of shows to binge-watch by then. Stay safe, friends. I'm off to hide under a blanket, watch Masterchef, and use up another Kleenex box. Love.
Sunday, April 16, 2017
I'M A PUBLISHED AUTHOR (and other news)
My parents are coming for a visit this week and I'm very excited to share my home and my city with them. My husband and I have come up with a list of mini adventures to take them on. We'll try to take some pictures for you all, but we'll more likely be too busy enjoying the moment to capture it on camera.
I currently have a cold, muscle spasms, and viral pink eye in both eyes accompanied by a sore throat. I went to the ER last week for two IV bags of fluid, as my body wasn't processing the water I was putting in it and I was severely dehydrated. I ended up in the ER for the second time in two weeks with a left eye so swollen I couldn't see. We met with an amazing doctor and he gave me eye drops that already have reduced the swelling almost completely. I do enjoy medicine when it works well. My husband has told me that this is my body's way of making me take the rest that it needs. He has been urging me to take days off for weeks, and now I am forced to rest and sleep and not touch anything, as the infection is incredibly contagious and I have two dogs and a husband I could infect if I am not careful. I'm actually grateful for this, in a weird way. I cannot get the manic side of me to let me rest unless I have no choice. And now I have no choice. Take that, manic tendencies!
I wish you all could have the joy of watching baby Jeph discover the wonder of squeaky chew toys. He loves to cuddle with them. He loves to chew them. He loves to lick them. He loves to roll around on top of them on the ground. He loves to fight over them with Riley. As I type this, I am slowly going deaf from an extremely happy pup chewing on his orange plastic squeaky bone on the couch next to me.
Mr. Jeph is learning very quickly. And I'm learning how to work with him more effectively. He needs a very different type of training approach than Riley did. He is full of energy and eager to please. And, bonus points, he is very food motivated! He will do whatever it takes to get that training treat. But since he is a puppy, sometimes he thinks that whatever it takes to get that training treat means attacking the hand with the treat in it, barking at the hand with the treat, rolling around on the floor, and various other adorable antics. It is hard to not get frustrated with him at times. But, just like a human student, if an approach isn't working, the teacher should try a different approach. He has learned "Sit," "Wait," "No Voice (a variation of "Quiet"), "With Me (a variation of "Heel"), "Leave It," and is starting to understand "Lie Down." He also knows to wait quietly for me to take his leash off when we come home from a walk or the dog park. He knows to sit and wait for his food at mealtimes. He understands the humans do not like being chewed on. He is beginning to understand Bedtime, and even voluntarily goes to his kennel when he is tired. He has made great strides with his confidence around other dogs. He no longer pees on me when he sees another canine, but he does take refuge between my feet when overwhelmed. He has been to the mall, an auto parts store, and a grocery store. He is also beginning to get wheelchair trained, as my new ride Priscilla (my manual wheelchair) will be a permanent fixture in our house now. And the accidents have nearly disappeared! After such a long time, I think it is safe to say that our potty training problem might be nearly solved. Jeph does keep having small accidents when he is asleep, as his body completely relaxes and he leaks. But overall, we are making strides and we will get to our goals eventually.
For months, my husband has been talking to me about me finding a hobby I can do. My old hobbies are not available to me with my current health state. He has also drawn out of me my love for Barbies. I used to be an avid collector. I had hundreds of Barbies, Skippers, Stacies, Kellys, and all their houses, zoos, doctors offices, animals, farms, cars, basically anything I could get my hands on. I would spend hours staging the houses with little utensils and plates perfectly placed on the dining table, the rubber ducks sitting on the side of the Barbie tub, and the living room arranged for maximum entertaining potential. I also loved creating outfits out of scraps of fabric, paper, yarn, anything I could find. For Easter, my husband surprised me with four Barbies from the new Fashionistas line! This is the line with four body types! They are: the original Barbie proportions, a "curvy" doll, a "petite" doll, and a "tall" doll. I'm just so excited because these Barbies are really amazing and their proportions are true to life! And just like that, my new hobby became clear. I'm going back to my old hobby with a twist. I'm going to be creating doll clothes for these new real-life-proportions Barbies! I'm just absolutely in love with the idea of creating fashion for these little dolls with my own hands. And I'm marathoning Project Runway for inspiration. And who knows, if I get good enough, I could sell some. But the point of the hobby isn't to make money, it's to have fun. And I'm so ready to have fun!
I think that this is all the updates for tonight. I'm off to take a nap and take some more virus medication. Love to you all!
Monday, April 3, 2017
So Many Updates
If you're following me on Instagram, you know that baby Jeph has begun having Service Dog Training outings.
Sunday, March 26, 2017
We Are The New Warriors
Tonight, I looked over the reading my Psychologist has given me. I set my alarm to get up in time to get ready to go to my first Group Therapy session, prescribed by my Psychiatrist. I took my evening mind and body medications in order to be able to survive the night. I looked over my prescription papers that say that I medically need a wheelchair starting now. And all I could think as I did all this was action movie music swelling the way it does in every good action movie and the main character (me) saying epically, "Let's do this!" followed by the bass drop and subsequent fight music.
When we say we are warriors, we do not take that term lightly. We are not being overdramatic. We are not applying labels to things that don't deserve them. Someone who fights as hard as we do is a warrior. These illnesses take our blood, sweat, tears, friendships, families, future hopes, saliva, organs, awareness, and whatever else they want. And we fight tooth and nail to keep as many of those things as long as we can.
We are many. We are mighty. And if we ever get completely better, we'll dominate the world. But for now, we will take naps and continue to fight when we wake up.
Friday, March 17, 2017
10 Happy Things
So. Here's 10 Happy Things:
1. Guess what my baby Jeph learned to do? He can open doors all by himself! He opens the door to go outside to pee all on his own. This is huge, people! Huge! And today, he opened the fridge for me for the first time! Simply amazing. I love him.
2. Tonight, my husband's friends are coming to see us. We're going to dress fun and go out and hopefully have an excellent evening.
3. I put an automatically-spraying air freshener thing in our living room and also cleaned the floors and now our house does not smell like pee. And will continue to smell nice, unless Jeph leaves me a present or two.
4. I'm excited to take a really relaxing bath this afternoon. I'm going to put so many excellent oils in it and stretch out my angry muscles.
5. There is ice cream in my freezer and I'm going to eat so much of it.
6. I'm excited to get my hair touched up so that it continues to look amazing.
7. There's a huge conspiracy thing going on that Justin Bieber is a reptilian creature and it's the best news story I've ever seen ever. There are like videos and everything where people go, "RIGHT THERE! HE BLINKED LIKE A LIZARD!" It's honestly amazing and I am so here for this.
8. I'm so excited to get Jeph's "Service Dog In Training" vest in the mail. Then, we get to start practicing and training in public.
9. I have so many green outfits that I have options for this weekend! I can try a bunch of them on and then decide instead of being stuck with a green t-shirt or something.
10. Magnum just released a Cookies 'N Cream ice cream bar and I need it.
Love to you all.
Wednesday, March 15, 2017
GREAT NEWS FOR EDS ZEBRAS!
Do you realize? Do you understand? This means there is updated information that doctors can read to understand how to treat us. This means those of us who have gone misdiagnosed and shoved to the side can be like, "OH LOOK! MEDICAL RESEARCH THAT YOU CAN READ THAT PROVES I HAVE AN ACTUAL PROBLEM IT IS RIGHT HERE LOOK AT IT!" It took me 25 years to be diagnosed properly, and with these new classifications, my type of EDS diagnosis might get altered slightly in order for me to get more specialized treatments.
The original classifications of "1,2,3" etc. have been replaced by acronyms and easily-understood diagnostic criteria. My "EDS Type 3 Hypermobility" would now just be called hEDS. How great is that? The others acronyms I've seen so far are cEDS (Classical) and vEDS (Vascular). Later today, the articles about the three main types (hEDS, cEDS, and vEDS) will come available to the public along with articles about the lesser-known types. I can't speak about those because I actually don't know what they are. I'm excited to find out and see if I fit those instead of hEDS. But if I stay with a hEDS diagnosis, I'm okay with that. But I digress. The point is, PUBLISHED NEW RESEARCH FOR THE FIRST TIME IN 20 YEARS!
There is even research on pregnancies and EDS. I know I've been very quiet about this kind of thing, but I absolutely cannot get pregnant currently. Is it possible for me to get pregnant? Yes. Is it horribly dangerous for me and my unborn child? Yes. Would we both die or be horribly destroyed for life if I didn't have an abortion? With the research from 1997, yes. What is this new research? I don't know, but I'm interested to read it! What a beautiful day it would be if the horror stories of women who have EDS dying in childbirth, losing their babies, and being wrecked and their baby being horribly hurt would disappear from the internet or be a rare case instead of the norm!
A week from tomorrow, I go to my doctor to talk about getting a wheelchair. If there are treatments that can reverse the damage my joints have endured or treatments that can slow that nastiness down, sign me up. Seriously.
The symbol for EDS is a Zebra. Zebra stripes on everything. Why? Because there is a famous quote by Dr. Theodore Woodward. Addressing medical students in the 1940s, he said, "When you hear hoofbeats, think of horses, not zebras." So many of us have been treated as confusing "horses" by doctors who get frustrated with us and shove us to the side and dismiss us when we explain that we're different from other "horses." When we finally realize we've been zebras all along, the relief at having a name for ourselves is incredible. Even more rare is finding a doctor who knows what to do with our zebra-ness. The more light this disgusting, debilitating, awful illness gets, the more research will go into it and the more treatments will be discovered and the more people will be positively affected and maybe someday those of us who are "Zebra Strong" will not be seen as burdens to doctors, but as human beings who have a terrible but treatable ailment.
Monday, March 13, 2017
The Good, The Bad, And The Jeph
Wednesday, March 8, 2017
Psych!
The building itself was probably the most run-down, creepy building I've seen. Think in your head of all the horror movies with psych hospitals, and then you have an idea of what I had to willingly walk in to. I almost couldn't get out of the taxi, as I was struck with such a paralyzing terror. I had been shaking all morning, and the moment I saw my destination, I couldn't breathe. Riley nudged me and made me get out of the car. She took me all the way to a building at the back of the creepy campus where the main entrance apparently was. She guarded me immediately upon entering, and did not stop guarding me for the next two and a half hours. If that doesn't tell you how awful the building was, I don't know what will. After getting registered at a run-down desk with people's pen marks all over it, I was led to a nurses' room to get my vitals checked. It was completely dark inside, as the nurses inside I guess don't believe in turning on the overhead lights. They took my vitals to the tune of someone's mixtape playing angrily in the background. I waited in a run-down, nasty waiting room. Then the grey clouds parted, so to speak, as I met the nurse who was going to be conducting my intense interview. She was a lovely person, and showed no signs of judgement no matter what I said. Her approach allowed me to open up and be incredibly honest with her the way I am honest with people I have known for years. After the interview, I had to wait in a nasty waiting room again for an appointment to get made, and guess who is returning to that awful building tomorrow for another two hour appointment where I will get a diagnosis and maybe some new medications? Me.
Last night, I broke down sobbing. I asked my husband what would happen if the diagnosis was something worse than what we thought. My loving husband held me and told me it wouldn't make a difference. He told me that we would just have a label for what is wrong and more possible treatments. He assured me he would stay with me no matter what and that we would get through the upcoming storms together, just as we have all the previous ones. I don't know what I would do without him as my rock. I never understood what people meant when they said things like "he is my rock" until I was married to him.
So listen up, hallucinations, voices, racing thoughts, flashbacks, panic, blank-out episodes, and everything else in my head. We're coming for you. Even if I have to go to every single creepy building in the world.
Thursday, March 2, 2017
Learning To Be Okay: Hostage Negotiations
One of the major problems I have is that I cannot buy nice things for myself or do any basic self care without feeling an incredible amount of guilt. There is a tiny, evil voice in my head that tells me that I am not worth it. That I don't deserve it. And I'm talking anything from makeup to clothes to skincare to expensive medications to bath supplies to basic groceries. I don't deserve to put fruit I like on the grocery list. I don't deserve to ask for a gallon of milk if my husband isn't going to drink over half of it. Sometimes it even tries to convince me that I don't deserve to take my pills on time. I haven't suffered enough for the day, so I should put off taking my heart pills. I am well aware that it looks ridiculous on paper, because of course I should eat and take pills and have clothes without holes, but please understand that this tiny evil voice is so convincing and so present in every decision I make throughout the day that I have moments of weakness where I believe it. It is exhausting to continue a running dialogue with it all day, every day. But the lesson I have learned about this voice is that it is not the voice of rationality. It is not the voice of reason. It is not the voice of truth. It took a very long time to learn this lesson, and I have to continually remind myself that no, this voice is not one to listen to and take advice from. The day I realized this lesson, it felt like I'd awakened from a nasty nightmare. Before I realized what was happening, my inner dialogue went something like this:
"I'm thirsty."
"You just had a drink fifteen minutes ago. You don't deserve another sip of water for at least another hour. Do some damn work for the first time in your life."
"True. Okay. What more can I do?" *Works self into exhaustion* *Dehydrates self* *Doesn't understand why self is always sick and why self cannot just rest*
Many times, the disgusting voice would try to openly convince me that I didn't deserve to be alive. I'd breathed enough air for the hour, I'd hurt enough people, I was gross and disgusting and the world had tolerated me long enough. I was ill from EDS, yet no one believed me and I was told how horrible and attention-seeking I was. Wouldn't it be better to just end everything than to hurt my loved ones with my supposedly fake illnesses? You see how convincing this nasty voice can be. The first time I tried to kill myself, I was 11. The knife was going toward my body when my mom unexpectedly came home and I was afraid of being caught and dropped the knife and ran to the bathroom to throw up. I know it doesn't make sense, but I didn't go through with it because I didn't want to burden my mom with finding my dead body in the kitchen right when she came home. Several other times that year, I waited until the house was asleep, said goodbye to my stuffed animals, put the blankets over my head and then held my breath until I passed out, trying to will my body to kill itself. Thankfully, it did not work and I woke up and sobbed, partly from not knowing why I wanted to die so badly, and partly because I was still alive. I could never tell anyone about these things, because that would be burdening more people, and that was unacceptable.
Once I realized that this voice was out to destroy, not help, my dialogue changed. I no longer willingly let it control my life. It feels like a hostage negotiation with my body as the hostage and myself and the voice as the opposing parties, but it is so much better than blindly listening. For example, as I sit here, I am running a dialogue in my head that goes something like this:
"I'm thirsty."
"You just had a drink fifteen minutes ago. You don't deserve another drink for at least another hour."
"That's bullshit and you know it."
"...Is it? Are you sure?"
"I'm thirsty, my water is right next to me, I'm going to drink it."
"You need to finish this blog post first. You haven't earned a drink until you hit "Publish."
"Screw you." *Takes drink of water* "Oh, I have to use the bathroom."
"It doesn't hurt yet, you can wait. Or are you so weak you have to put your disgusting self in the bathroom more than once a day?"
"That...makes no sense. I'm going to the bathroom."
"Ok, fine, but good luck taking a shower today because you haven't done any housework."
"...Ugh."
I am aware of where this evil voice came from. I won't get into a lot of it here, mostly because I'm afraid to hurt people who may have unwittingly contributed to it. But I will say that I know that it stems from my fears of inadequacy, my inability to be perfect all the time. I will also say that if you have any interaction with children at all at any point in your life, encourage their uniqueness and their individual abilities, talents, and personalities. Be loving and safe. When children feel that the adults in their life are not safe unless they perform a certain way or act a certain way, it feeds that nasty voice that I would not wish on anyone. Children start to withdraw, which is sometimes mistakenly viewed as a sign of maturity. A child with no personality to speak of is a terrified, hiding child, not a well-behaved young person. You might be surprised how the children under your care actually grow if you prove yourself to be a safe adult. And if a child trusts you enough to let you see their true selves, do your damndest to not violate that trust. Teach your children not to bully. Bullying is not funny, it is not something all kids do, you are literally screwing with people's lives. Take your role as a parent or teacher or caregiver or relative or someone who sees a child occasionally seriously and be a safe person.
I am looking forward to getting more tools for dealing with this nasty voice from my new psychologist and possibly controlling it a bit more with medications my new psychiatrist might supply. But until then, I will continue the hostage negotiations.
Wednesday, March 1, 2017
I'm So Tired And The House Is So Messy
I might perhaps be able to dust some today. In the living room. So that is one out of like seven hundred things I need to do. Did I mention that I have a Colonoscopy/Endoscopy on Friday? Did I mention that most people have to go on the liquid diet for one day but I have to start it today? Did I mention that I ate breakfast this morning as my last meal for the week and it made me incredibly ill for no reason whatsoever? Did I mention that I'm on hospital-level mgs of Zofran in order to stay out of the bathroom? Send help, folks.
Of course my husband would help me with everything if I asked him, and he does so many things without me asking. He takes care of the trash and the dishes and takes care of Jeph in the evenings and I honestly don't know what I would do without him. Probably cry more.
But the point of this post is not to tell you that I've got an amazing husband. It is to tell you that I am feeling overwhelmed and tired and crabby and sick and that this is normal considering what my body is going through right now and that it is okay to feel these things and to let these feelings run their course so you can get past them and get back to living life. Which I will do. This post is at the height of feeling overwhelmed. Perhaps later today or tomorrow, you'll all get a post about how life doesn't suck as much as I thought it did in this particular moment. We will see.
Master To-Do List That You Are Not Expected To Read But I Wrote Out Because I Needed To Vent Somewhere:
1. Backyard poop pick-up
2. Dust Living Room
3. Dust Master Bedroom
4. Clean both bathrooms
5. Laundry
6. Dishes
7. Trash
8. Pick up all trash the dogs have scattered all over the house
9. Throw away the old flowers on the dining table
10. Get Jeph humping Riley's head on camera because it is hilarious and he does it when she takes his toys
11. Write a blog post that doesn't suck
12. Clean Kitchen counters
13. Clean Dining Room table
14. Vacuum and Baking Soda Master Bedroom
15. Re-learn rules of capitalization because this post is a mess as far as that is concerned
16. Put all the weird stuff that found its way into the Living Room away
17. Swiffer (the wet steamer one) the hardwood floors
18. Give Jeph a bath because he smells like pee again
19. Clean Jeph's kennel because that's probably where that awful smell is originating from
20. Put the ten loads of clean laundry that are hiding in the first side room away
21. Clean both side rooms so they are useable and we have company coming in a few weeks and also maybe we can shove the dogs in one of the rooms occasionally to play
22. Vacuum both side rooms
23. Take all the papers that haven't been filed and file them already for goodness' sake
24. Re-organize the side room closets because they are gross right now
25. Continue to teach Jeph "Down" and "Lay Down" this week as well as reinforcing "Sit," "Leave It," and "Quiet."
26. Cry over how long this list is and how you're literally only going to be able to do maybe two things off of this list.
Monday, February 27, 2017
Things Learned While Travelling Part 2
1. People do not know the rights Service Dogs have. Not even some legitimate Service Dog handlers.
2. My husband has a fantastic family whose love for each other is incredibly deep and will last lifetimes.
3. Travelling is one of the most exhausting things for a Spoonie to attempt to do.
4. It takes my husband being exhausted for four days in a row for him to start feeling the level of exhaustion I have after four hours of being awake.
5. Kennels are nice, but re-uniting with your puppy after a trip is better. (Jeph had a glorious time at his puppy summer camp.)
6. I will pay whoever I need to pay so that I never have to go to Texas ever again. Ugh. My apologies to anyone who loves Texas, but you're wrong.
7. Never admit to any American that you hate the song "God Bless the USA" (... and I'm proud to be an American, where at least I know I'm free...) (And I did just admit it here. Woops. That background track, though...Ew.)
8. There is actually not a site more inspiring and lovely than a bunch of families rushing to greet their loved ones they haven't seen in months.
9. Jeph is a mix of Heeler and Alaskan Malamute. We saw a picture of those puppies and it was exactly him. Yes, this doesn't apply to anyone except us, but still. I learned this while travelling.
10. You're not drinking enough water. Go have a glass right now. You're welcome.
Wednesday, February 22, 2017
Things Learned While Travelling Part 1
Things I Have Learned By Travelling Part 1:
-People are mostly self-centered when in airports and will knock service dogs out of their way to get to their gates.
-McDonald's is good everywhere.
-I hate talking to people on planes.
-So many people refuse to read "Do Not Pet" signs.
-TSA agents are sweethearts who are usually dog lovers and who are doing a thankless job.
-DFW is the Devil. I have found Hell, and it is consistently located in the bowels of the Dallas-Fort Worth International Airport.
-Any airport that claims to have services to accommodate disabilities really just means that they have an elevator somewhere and some dirty wheelchairs that don't actually function and maybe someone who doesn't communicate well to drive you to a random gate.
-Riley is one of the most well-behaved Service Dogs in an airport at any given time.
-People love Riley and will run me over to ask her how she is and if she is a good dog.
-People think that if someone has a Service Dog, it is okay to interrupt their private conversations to loudly inquire about said dog.
-My husband is still my hero and gets even more annoyed than I do with the stuff disabled travellers have to put up with.
-Chick-Fil-A will give you a plain grilled chicken patty for your dog if you ask (yes, you pay for it).
-We need more USO rooms in DFW. PLEASE.
-Travelling with people who know what they're doing or travelling by yourself are the best ways to travel. Unless you like stress and adults acting like tired toddlers.
-Watching CNN while waiting to board does not help with travel stress (AAAAAAAAAAA).
-Always wear loose-fitting clothes and say "screw it" to bras and belts. Put a sweater or jacket on over that business and be comfy. You'll thank me later.
-Empty water bottles that can be filled up after security are invaluable unless you like paying outrageous amounts of money for airport water.
-Be prepared (Scar or Boy Scouts version).
-No one can pronounce my last name.
Wednesday, February 15, 2017
What Even Was This Week So Far?
On February 13, I woke up to the doorbell ringing and my dogs losing their furry minds. When I opened the door, there was a florist with an arrangement of a dozen roses and baby's breath! I was so shocked! The florist didn't want to just leave the flowers outside because there was what qualifies as a Winter storm in New Mexico going on, so he just kept ringing the doorbell until I got to the door. And as you all know, EDS means I move extremely slowly. My poor dogs. But anyways, the flowers were from my husband and they were gorgeous! They remain gorgeous, sitting proudly on the middle of our dining table. I really don't like sharing romantic things my husband does with the public as they happen, as I feel those things are between us and meant to remain private. So I'm sorry, but there was no Instagram post of the flowers. I do enjoy everyone else's posts about the things they do with their significant others (it's one of my favorite things), but personally I don't feel comfortable posting those types of things until after the fact. When I went to put the flowers on the table on Tuesday, I realized just how incredibly dirty my house was. I couldn't have those flowers in a dirty house. No, sirree.
Fun fact about me: I often have manic episodes that result in crazy amounts of things getting done. They usually last a few hours. This particular one came on suddenly and lasted for five hours. Riley recognizes the look in my eye and will hide to avoid getting a bath. Jeph's soft and shiny coat and freshly-trimmed nails tell the tale (tail haha...I'll see myself out) of how he did not heed his sister's advice and failed to hide in time. Poor little guy hates baths. I have done every trick in the book, but to no avail. On Tuesday, I drained the tub and got in with him. He hid between my legs and was okay with getting the soap rinsed off as long as he didn't get dragged from his hiding place. I mentioned before that he likes showers, but he is simply too big now for me to hold him and clean him and not drop him, especially if he wiggles.
The house enjoyed a deep clean. The living room, garage, kitchen, dining room, laundry room, and bedroom were all taken care of. I had to shower three separate times, as I am allergic to all dust and my manic cleaning kicked up quite a lot of it. By the time my husband came home from work, I was exhausted on the couch, hardly able to move.
I was vaguely aware that a year prior, my husband had got down on one knee and asked me to be his. But I assumed we would just be happy about it and save our celebrations for Valentine's Day. I assumed wrong.
My husband told me that we had dinner reservations for 7:30 and that the flowers were indeed meant for February 13, not 14. I was completely flabbergasted and excited, but so very tired. Husband let me take a nap to gain a few more "spoons" (the way the chronic illness community refers to energy*). I had a beautiful time dressing up and doing my hair and makeup extra fancy. Husband kept the destination a secret until we were there. It was this gorgeous restaurant, in our city's preserved antique section of town. It was candle-lit, the food was open-fire-cooked, and the waiters were all obviously professionals who were proud to make this their career. As they should be. What a meal! Steak, crab legs, fresh salads, soups, bread, mousse, and more! It was honestly magical. As was our server's impressive beard. I could go on and on about the merits of this hidden restaurant jewel, but I think I'll keep the rest of this particular memory between my husband and I.
Then came Valentine's Day. Oh, what a day. It began with getting up disgustingly early to drive my husband to work so that I could have the car for the day. What I thought was going to be only a fifteen minute drive to a new Internal Medicine Specialist turned into a forty-five minute evil hell ride, as I had the address wrong when I had looked it up the day before. I'm not even supposed to drive more than ten minutes at a time, as my head and neck end up in an extreme amount of pain. And here we were, having gone forty-five minutes one way. Riley was carsick by the time I finally pulled into what appeared to be a dilapidated old hospital.
Again, if you know me you know that one of my Traumas that fuels my PTSD stems from a terrible hospital/surgery experience. Walking into a converted hospital was not a good idea, but with Riley gently tugging me along, I opened the door and headed in.
I'm sure I've been in a more confusing lobby, but I don't remember it. I had no idea what to do, and there were no signs to tell me. Finally, I found a box of stickers where I was to fill out my personal info. Think "Hello My Name Is" stickers with a few more lines and a place to put your doctor's name. I filled out a sticker, then just stared around the lobby until I caught a passing nurse and begged for instructions. It turns out "everyone knows" that you put this sticker with your personal info in this unmarked box and then just sort of hope that the admitting staff looks in the box and calls you over and also hope that this sticker gets shredded or something. Fun. Eventually, I was called over to a desk where I was "admitted," which was confusing to me and upsetting to my Trauma Brain. I was here to see a specialist, not to get admitted into a system. I ended up getting a yellow band, as I was at risk of falling at any time. The one thing that was good about this whole admitting fiasco was that they had a separate form that asked for my preferences. What name would I liked to be called, what gender I identified as, my birth gender and name, my preferred language, my sexuality, my religion, and other questions. The admitting woman then immediately switched to referring to me as "Abby" instead of "Abigail." And didn't slip up once. And neither did the nurse who called me to the back. It was a bright spot, as I felt that they would for sure honor and respect the requests of individuals whose names and genders were different than they were at birth.
Then it was time for the actual appointment. The nurse who took me to the back obviously had not been briefed on any of my conditions, as she asked me to put my belongings on a shelf high above my head while she took my height and weight. There was no secondary option, so I put my things on the floor. She was very confused, and seemed thrown off her game. Apparently everyone she knows can lift heavy things above their heads. I mean, you'd think the giant Black Lab with "Service Dog" and "Mobility Assistance" and "Medical Alert" stickers all over her vest would be a clue. And I was right about it being an old hospital. I was led right past a place that looked exactly like the nurses' station in the cardiac unit in a hospital I had been in. I kept myself firmly focused on Riley, having asked her to "follow" the nurse to our room. I had been told to bring my medical records and had a huge stack of just the last few years (my whole medical record would fill up several cabinets). But the nurse did not want the medical records. The admitting woman had not wanted them. I had no idea why I brought them. The nurse mentioned that "Ms. Guttman" would maybe want to flip through it. I was confused as to why the nurse wasn't saying "doctor," but then just brushed it off thinking that this was a workplace that encouraged familiarity. The nurse finally confessed to me that she was terrified of dogs, and I immediately apologized and asked Riley, who was guarding the front of me, to go and sit on my left side. The nurse took my pulse incorrectly, spelled all my allergies incorrectly, and didn't want to write down any of my medications in my file. I chalked this up to being terrified of my dog. I never blame anyone who is afraid of Riley, because if someone came in to my place of business with a tarantula, you better believe I wouldn't be able to do my job!
Then came the specialist I had been waiting two months to see. I was almost out of medications, and was eager to speak to a specialist about managing my meds and getting re-fills/re-prescriptions. I've also been sick to my stomach and bleeding rectally for two weeks now, and was wanting to ask what the hell was going on with that (TMI, I know. But this is what you read my blog for, so...).
The door opens. This small woman walks in. She asks me if I am Abby. I say yes. I say, "Hello, Dr. Guttman." She says, "Oh, I'm not a doctor. I'm a registered nurse practitioner, so I hope that's okay." I was stunned. She sauntered over to the doctor's chair and began to glance over my file. I managed to say that my Special Needs Coordinator had made this appointment for me with the impression that she was an Internal Medicine Specialist and that it even said so on my referral letter from my insurance company. She nonchalantly responded with, "Oh, I misrepresented myself. But I've been a nurse for so many years I'm practically qualified to be an Internal Medicine Specialist." I wanted to run away, but my life-saving medications were running low, so I sat through an agonizing, frustrating, terrible appointment in order to get prescriptions for my meds. It included, but was not limited to: the stethoscope getting stuck in my clothes three separate times, her not being able to hear my heart and lungs because her "hearing is failing," her demanding to know why I'm on so many medications, her confessing that she had no idea what I'm diagnosed with, her looking at labs from four years ago and saying that she's sure nothing has changed since then, her telling me to go to a different health system because she used to work for them before they fired her for wanting to retire (suuuure), and her taking a full half an hour to type up four prescriptions.
When the appointment was over, I gave Riley an emergency command. Her normal "let's leave" command is "Lead Me Out." Don't judge me, but her emergency command is "Let's Get The Fuck Out Of Here." She also responds to "Let's GTFO." She pulled me all the way through the run-down old hospital, through several doors, and out to the car and didn't let me stop or cry until I was firmly inside the car.
I sat in the car shaking and crying. When I finally calmed down, I realized I was going to have a forty-five minute drive home. Cue the crying all over again. Riley licked me from the backseat and grounded me until I could get a hold of myself.
My poor husband got a torrent of furious texts. He took time out of his work day to respond, as he was also horribly angry at what had happened. I decided I was going to get McDonald's for lunch. I had planned to stop by the BX (like an Air Force version of Target) when I got back to the base and pick up a surprise V-Day gift for my husband, but after that particular "adventure," I decided to grab some Valentine's Day chocolates as well.
After picking up cheeseburgers, fries, and a Shamrock Shake (my guilty pleasure that I wait for all year), we sat in the BX Mini-Mall parking lot, took deep breaths, ate, and fully put the horrible morning behind us.
Riley and I dropped my prescriptions off at the base pharmacy and headed to the BX. We took a slight detour on our way to the chocolates because Riley was alerting me to the danger of a mannequin that she thought was standing suspiciously still for just too long to be harmless. We picked up a cologne Husband has wanted for months, a sweet Valentine's Day card, and many chocolates. Usually I wait until February 15-17 to get the chocolate on sale, but this was an emergency situation.
My Care Coordinator was incensed when I told her what had happened. She told me that they had told her over the phone that this woman was an Internal Medicine Doctor, and that there was no excuse for them lying like that. She is now working on finding me an actual Internal Medicine Specialist.
Jeph was more than happy to see us when we got home, but Riley was so tired that the little guy ended up playing by himself while she slept.
When Husband got home from work, we shared leftovers from our romantic dinner. I then took an aromatherapy bath for pain, as my body was over-exhausted by the events of the day. After the bath, which was absolutely amazing, I was re-energized and we went to a Mexican sports bar for dinner. We enjoyed drinks, wings, tacos, nachos, and yelling at a UFC fight, a basketball game, and several horse races. It was exactly the kind of thing that was needed after the day we had both had. We left Riley at home because the poor girl was exhausted and would have hated the loud environment of the sports bar. I do need her 24/7, but when Husband and I go out we occasionally leave her at home to rest, as he is very good at recognizing my symptoms and signs and sometimes parents just need Date Night.
This morning, my neck is horribly stiff. I can't look to the right. Jeph is enjoying this, and continually waits until my back is turned before jumping up on the trash can. I will take a bath later, enjoying some amazingly potent oils that I got from this amazing little herbal and natural medicine shop Husband and I discovered in downtown Albuquerque. I am also wearing an Aromatherapy necklace I got from that shop, and it has been invaluable.
I'm not sure when my next blog post will be. Today, I am resting. Tomorrow morning I have a two hour Psychiatry evaluation and intake appointment and tomorrow afternoon I have a one hour Psychology evaluation and initial appointment. Tomorrow will be so tiring. Friday I see my current Primary Care Manager (aka regular doctor) and will ask about the infection in my belly button, the bleeding from my butt, and my extra nausea. Saturday, Riley has a grooming appointment at a new groomer's. We have a few days of rest and then it's off to Texas for Husband's brother's graduation with the In-Laws. Wish me luck and spoons, friends. And follow me on Twitter, Facebook, and Instagram for pictures and stories in-between blog posts.
*https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
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