New Doctor. New Problem.

I dread going to doctor’s appointments, especially with new doctors that need to run initial tests. Since we moved here, it took awhile to get settled and to be able to get referrals for all of my necessary specialists. With all of these specialists, I have already seen doctors and had a plan for treatment, but somehow, I always seem to get something new. After scheduling appointments for nine different specialists, I had to be seen again by my primary doctor. She then ordered some thyroid blood tests and an ultrasound, sent me to a NEW specialist, an endocrinologist. I knew from years ago that my TSH levels tend to be low. Not very low, but still lower than the normal range. However, my FT3 and FT4 levels are usually normal. Back then, they just said “possible early multinodular goiter” but with little to no follow-up. The other day, I got a new ultrasound, and I am waiting to see my new doctor. The tech, though usually they don’t speak, told me he found a cyst, at least one nodule, (may have been two based on what I saw), and a slightly enlarged thyroid (goiter). He ended with, “I’m interested to see what the radiologist says about this. She will look at it by the end of the day and we will fax it to your doctor before we leave today.”

Um. Okay. Is that supposed to freak me out? Because it is 2pm and you are telling me your are going to have this done in two hours, when things like this usually take a few days?

So since it is the weekend, I know must wait until the doctor gets the fax and calls, and then wait until I can actually see the Endocrinologist.

I. hate. going. to. see. doctors.

There is ALWAYS something to add to my list.

On a happier note, my son had his follow up with his cardiologist (his open heart surgery was last year to close a hole in his heart), and he is healthy and doesn’t have to go back for 2-3 years for another echo. At least he doesn’t have the same problem with doctors.

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Preparing to Work

I used to work in logistics while active duty in the Air Force, which is likely part of the reason my body is so messed up these days. When I got out of the military I spent about a year home with my kids, then still very small, a newborn and a one year old. Just after my diagnosis with Ehlers-Danlos Syndrome, I got a job as a Secretary in the base medical clinic. Shortly after I started, I was finally able to get some of the initial tests and specialists appointments due to my EDS diagnosis. With each appointment, something new was found. By the time I left that job to move up here, my diagnosis list had grown exponentially. And it seems like they all include the phrase, “you’ll be dealing with this the rest of your life.” Gee. Thanks.

With Ehlers-Danlos, I also deal with Sjogren’s syndrome, dysautonomia, herniated discs, PCOS, Sleep Apnea, Neuropathy, high blood pressure, IBS, and more. Let’s just say, I see about 9 or 10 different specialists, with at least 5 of them on a regular basis.

Going back to work always brings with it certain challenges. I love to work. Being at home these last several months gets me fidgety. Not that I haven’t been busy, I have been studying for my master’s degree. I have so much to do with school, that work will probably incredibly stress me out. I just really like the feeling of working, learning and earning money.

This great opportunity came up for a temporary position where I can learn so much in relation to my degree, and I am excited to start on MONDAY. With extremely short notice, it is a little scary, but I’m just glad I dyed my hair back to a natural color a couple of weeks ago. So now, I need to prepare myself to be able to do everything. I need to prepare for the extra stress on my body, my mind, even less sleep than I get already, only being able to do school work late at night and weekends, and the drain of potentially dealing with dramatic and petty people.

Some of the things I am doing, is getting as far ahead in school as I can right now, and setting a to do list that allows me to check off every assignment, every reading, every lecture that I have to do. This app, Wundlerlist. is working perfectly for me and allows me to make lists of different types of tasks. I have started using it for other tasks I generally forget easily. Lists are extremely useful for someone with brain fog. Also, I am doing all the cleaning and laundry that I can manage until Sunday. Sunday I am going to relax as much as I can, maybe use that day to do as much homework as possible, because Monday is going to be a crazy new schedule.

What do you do to prepare for work or to help with the stress of working or for changes in schedules or activities?

Illness Army: Diagnosis of a Chronic Illness

This post was featured in the Illness Army Series by Cass at Indisposed and Undiagnosed. Please view her blog for some great posts from many suffering from chronic illnesses.

 

Diagnosis of a chronic illness.

At first, there is some relief. You think, finally I know what is going on. My questions are finally answered and someone actually listened. Now I can move on.

But sooner or later, depending on the person, realities of what the diagnosis means sinks in. For some, a little at a time, for others all at once. Sometimes triggered by events, sometimes by people, sometimes out of nowhere at all. Things will forever be different.

These times can be extremely distressing, exhausting, terrifying, depressing. But, the important thing to remember is you can still be happy. You can still do things, they may just be different things, or the same things but in different ways. With the right support, anything is possible.

Here is a list of 10 things you can probably still do:

  1. You can tell people you love them. You don’t have to be able to do everything for them. You don’t have to be the one to cook or to clean or to fix things around the house. You may not be able to show them love in ways that you used to. But, you can find new ways to show them. And even in the hardest of times, you can always just tell them that you love them.
  2. You can smile encouragingly at others that may be going through a hard time as well. If you see someone getting out of their vehicle, parked in the handicap spot, you can smile at them. Even if they don’t look sick, you know they could be going through so many things, and with all of the other rude people in the world, you can be the one to brighten their day.
  3. You can accept help and support. Others want to be helpful. You may not be the type of person to ask for help easily, but sometimes all people want to do is be able to be there for you, to be able to help in any way possible. Give them that chance every now and then. It will help both of you.
  4. You can follow doctors’ orders. This is a hard one sometimes, but it can make a big difference in your everyday health, pain levels and attitude to do the things the doctors suggest, whether that includes just taking your medications on time, doing exercises, eating healthy, keeping a positive attitude, or just making all appointments.
  5. You can kiss your family. Love them. Kiss them. Hug them. All the time. Don’t hesitate to give them love.
  6. You can laugh. Laughing can be healing. It can improve everyone’s attitudes. It can change your whole day for the better. Laugh whenever you can.
  7. You can live. You can live your life. If something is keeping you from doing something you want to do, find another way to do it. If walking through the store is too much, don’t be afraid to use the motorized carts. If you want to take your kids to the amusement park, plan ahead and do it. You may have to rent a wheelchair or cart, or bring a walker or cane, or take tons of breaks and drink tons of water, but you can do it if you really want to.
  8. You can help others. Even something small, like a dollar in the donation can at the store, or something big like heading a fundraising campaign all make a difference. Sometimes the simplest things can be a great help to someone else. Try doing something once a day that is purely to help someone else. Helping others brings joy.
  9. You can dream. Dreaming gives us a chance to live a different life. You can fly, swim, jump, walk, run, or do anything you want in a dream. You don’t have to wait until you are sleeping. You can close your eyes and just imagine it. See it happening.
  10. You can be happy. Sometimes people think that because you are smiling, that means you aren’t really hurting or sick. They just don’t understand chronic pain. I don’t think anyone could truly understand chronic pain without having it. A life of chronic pain means that our pain tolerance is pretty high, and that sometimes we can still walk and laugh and smile, even though we are actually dealing with some significant pain. We have to. You can live happily if you want to. You can smile and laugh and do what you want. Don’t let the actions and comments of others dictate how you live your life.

Diagnosis of chronic illness is hard. It is hard for the one diagnosed, for the family, and for the doctor. As long as everyone is understanding and supportive, everyone can still live a happy, loving life. You can do things. They may be different things now, but you can do them.

Handicap Parking with Invisible Disabilities

Many with invisible chronic illnesses know all too well how frustrating it can be to not be understood, or to be judged with the use of a handicap placard. When most healthy people see someone park in one of these spots, I think they expect to see someone elderly or in a wheelchair, or maybe using a cane or walker. This is understandable, as this is what society believes disabled means. But, the reality is that there are a number of invisible illnesses where a handicap placard can be extremely useful.

Invisible illnesses like arthritis, connective tissue disorders, autoimmune disorders, internal injuries, cancer, multiple sclerosis, and more, all could require the person with them to need the help of a handicap placard. For some, the reason is purely pain. Chronic, excruciating pain no matter where it is in the body can be disabling. Even if you cannot tell that the person is in pain on the outside, they may be battling with each step on the inside. This is because those with chronic pain tend to be better at hiding it than the average healthy person. Pain tolerance is much higher due to our ‘normal’ level being much different than ‘normal’ for those without chronic pain. People with chronic pain may not even know what it is like to not be in any pain at all, for some have had it their entire lives.

You see me walking from my car, quickly and with a smile, but what you don’t see, is that every single joint feels like it is breaking with each step, my head is pounding, my heart is racing, and the fatigue is making it hard to move my legs. But this is every day, every moment, so I have learned to hide and and just get on with my day.

For others, it isn’t about just pain, but fatigue, or even a heart condition that makes the heart race, or the person light-headed like they will faint. For some, it is about the weather. Heat and cold intolerances are more common than you think, and cause pain, nausea, lightheadedness, fatigue, etc. Just because it doesn’t look like someone is sick or hurting, doesn’t mean they aren’t.

Please don’t be that person that asks every person that doesn’t look sick whether they should park there, or worse make rude comments to them, or tell them they are terrible for parking in a spot they have a right to. You really have no idea what they are going through, and it is more likely that the person truly is disabled, than someone just abusing the spot. Let’s give people the benefit of the doubt. Next time you see someone parked in a handicap spot that doesn’t necessary look handicap, try giving them a kind smile, or opening a door for them. Kindness is contagious. You might change their day around. It is hard enough dealing with invisible disabilities, but to get constantly judged and rudely remarked at, only makes it harder.

Endurance and Optimism. We can get through this together.

Overcoming Ethnocentrism and Prejudice

Why is it that we always think our way of living is better than another’s? Why do we feel like every other country in the world would be better if they were like us? This idea that we have a ‘better’ way of living is at best ignorant, and at worst egotistical and selfish.Who are we to say that someone else is or isn’t happy? Often ethnocentrism turns to prejudice, which becomes anger and hatred.

We need to remember that people can live happily in different ways. We are all different. We have different backgrounds, different cultures, different beliefs. There will always be something that doesn’t agree with you in every single belief you own. It doesn’t make them wrong, just different. Someone living in another country will have a different way of life, with different political, moral and religious beliefs. We are not better than them, and they are not better than us. We are just different.

My own medical issues have shown me how important it is to understand that everyone has a story. Anyone you see on the streets, at the mall, in the grocery store can be going through something you don’t quite understand. Maybe they have an invisible illness, or maybe a family member or friend just died, or maybe it is their birthday. We can’t know their personal story, so we should avoid judging. That is not for us to do.

If you believe in New Year’s Resolutions, or just want to improve yourself, why not start by being understanding, thinking the best of others, and doing something nice for a stranger as often as you can. Even an encouraging smile can change someone’s day for the better.

Freezer Meals Failures and Tips

12190767_817942626374_656855467_o111A couple months ago I decided to attempt freezer meal cooking to help me out on days that my energy is low and pain is high. See the post here. Since then I have done another freezer meal day and I have learned several things in the process.

  1. The ziploc bags nearly always leaked either while starting to freeze or defrosting in my fridge. I got name brand bags and even double bagged them the second time around. It helped but didn’t solve the problem completely. In the future, I plan to buy extra large stack-able storage containers for my freezer. I have found that the locking lids work best because the top can’t come loose when getting cold like cheaper snap on ones. Something like this. Above are my double-bagged dinners. The majority of them didn’t leak, but some still did. Never through the top, it was always the bottom corner or side-seams that tore.
  2. Certain meals are actually easier and taste better in the oven, even though they are marked for the slow cooker. I found that certain meals, like ones for seasoned meat, like my favorite Lemon Pepper Chicken, putting them in the oven makes for juicier chicken. It was just as easy for me to stick them on a backing sheet and put them in the oven, than dumping them in the slow cooker. When you are home and can stick them in about an hour or so before dinner time (or you forget to stick them in the slow cooker in time, which was my case, the oven is a very good option, and I think it tastes better. My slow cooker chicken seems always dry. (Maybe you all have some tips you can put in the comments to remedy this).
  3. Slow cookers really do cook at different times. I overcooked most of mine the first time. When the recipe says 6-8 hours, check at 4. I found that mine was overcooked every time even at the earliest time given on the recipe. Experiment with your recipes and determine the best length of time for that specific meal. WRITE IT DOWN. I have the meal lists on my computer and edit the labels with time changes.
  4. Before shopping, make sure your shopping list is thorough and check ALL of your supplies. This may seem obvious, but as a person that has trouble remembering details, I found that I tend to miss things if I don’t triple check. My second freezer meal attempt sent me to the store 4 times in one day. yep. never again. For a couple things, I thought I had enough in my pantry but ran out. For others, I missed them on the grocery list. For some, my list didn’t say how much I needed, and I ended up not getting enough. Be thorough. If one recipe calls for 2 14oz cans of tomato sauce and another calls for 1 28 oz, and another yet for 3 14oz, keep track of how they will be separated when making the meals. You may want to get bulk to save money, but in some cases, you may want to have a couple separate if you can’t make them all at the same time.
  5. Don’t forget side dishes and extras. Write on your list how many side dishes, what types, and even plan ahead what they will be if you like. Don’t forget things like parmasan cheese for an italian meal or bbq sauce if your family wants it for dipping. And don’t forget essentials that we sometimes don’t put on our lists because we get them every time anyway. Make sure you buy enough if you will need them for the recipes too.
  6. Have the recipes, ingredients and labeled bags ready before you plan to do the assembling. Don’t wait until the time you set aside to assemble, because labeling takes time away from assembly. Last time I didn’t finish in one day because I had to spend time labeling. I didn’t end up making those meals at all because of pain.12185612_817942636354_524890089_o I didn’t even bother to put away any of the ingredients after shopping. I did the shopping the day before assembling and I left everything out.12193931_817942646334_1159626150_o.jpg
  7. If you are hurting, take breaks. Don’t completely over-do it just because you really want to get it done in one day. Sometimes that is impossible. You may want to do less meals in one sitting next time. I did 27-28 both times, and it was really too many for me. I ended up on the couch for days after.
  8. Find shortcuts that you are comfortable with. I don’t buy fresh garlic. I buy a jar of minced garlic. It isn’t worth it to me to buy fresh. If you can get certain things already chopped, you may spend more, but will save a lot of time and wrist/hand pain. Get a food processor or a chopper if you can. Though I got a hand-chopper and it was virtually useless, so it may require a bit of an investment for a really good one. I hear this one is great and it is on my wishlist.
  9. After trying a new meal, write down any changes you want to make, and if you don’t like it remove it from your list entirely. My conditions give me some terrible brain fog, and often I can’t remember if I liked something by the name of it. After I try a new meal I have to immediately write on my list any changes I want to make or delete it. It helped especially in improving cooking time and removing certain ingredients I didn’t like.
  10. You don’t have to eat them every single day. When you make a meal plan, leave a couple days a week empty. Use those days to catch up on any leftovers (especially with the soups, as they tend to have a lot of servings) or go out to eat. Move the empty days around based on how you feel that day. If you are feeling good, you may one to use the empty day to cook something special, or use the empty day for leftovers if you aren’t feeling well and didn’t have a meal defrosted. Don’t feel like you have to eat one every day.
  11. While ebooks are great for recipes, they aren’t necessary. There are free freezer meal recipes everywhere. Check pinterest and even google. You can find hundreds of good freezer meal recipes without paying a cent. Most of mine are from New Leaf Wellness because even though I don’t like every single recipe, I do love most of them and her instructions and shopping lists are wonderful.

I hope these are somewhat helpful. I’m at a standstill with meals right now because of some medical issues, which I’ll explain a little more next time. Have a good day! Feel free to leave comments!

Forgetting to Remember

I’m reading my favorite book series again, as well as listening to the audiobook of another series I read just a few months ago, and watching a TV series that I have  seen numerous times in the past. Not at all the same time of course. I know many that do not read books again, that don’t bother watching the same shows over again. For me though, I must if I want to remember the stories. At least not remembering what happens in these stories means I get to experience the story as if it was the first time.

But books and TV and movies are the only things that I forget. I have missed numerous appointments, forgotten playdates and events. I always forget something important when grocery shopping and even detailed lists don’t always help. It is called “Brain Fog.”  It is a symptom of two of my conditions, Ehlers-Danlos Syndrome (a connective tissue disorder) and Sjogren’s Syndrome (an autoimmune disorder). It causes some memory loss, confusion,  problems with clarity, and that feeling like what you want to say is right behind a door in your brain and you just can’t get it open. I used to be a good writer. It was easy for me and words just flew out without hesitation. But even just this post has taken two days because the words no longer flow. Sometimes, I have to use a thesaurus to try to figure out the right word I want to use.

It helps when people remind me of past events or facts, things that happened, etc., but it doesn’t always make me remember. My spouse has gotten upset numerous times because I forget things that are important to him. In the morning he will tell me something that he needs to do, or ask me to do something for him, and minutes later, I have completely forgot. When I fail, he will tell me that he told me, and I still can’t remember. It seems that I only have clear memories of things that were very significant, and even then, only few specific details, if any.

I look at photos and even with evidence, I still find it very difficult to remember. Lately, I have really been struggling with it, because I don’t want to forget my life. I have considered writing in a journal every day so that I can look back and read about my life, but I forget to write in it.

I wish I could describe how upsetting and scary it is to forget everything, to be unable to bring my thoughts to words, to not be able to explain to my husband or to my kids why I can’t remember details, conversations, or even what day of the week it is.

Sorry, for rambling on about this, but I needed to get it out.