Becoming my own healthcare specialist...

On Tuesday I had a little phone chat with my doctor. I'm not going to talk about what a nightmare the call was but it ended up with him giving me a prescription for a different antidepressant that, in his own words, "is not really like Cymbalta but sort of". I was struggling with deciding whether or not to start taking another antidepressant (I actually wrote an entire post about it, even asking you for your opinions, but OnSugar has chosen not to publish it because they think it's SPAM!) but I have since made a decision regarding the Effexor.

I'll put it simply – absolutely not, no way, never. I did my own research and have yet to find one piece of information (in either professional medical documents or patient forums) that suggests it works for Fibro pain. It is essentially an antidepressant and I am extremely anti antidepressants from here on out.

I was never depressed. I was put on an antidepressant that has been clinically shown to be effective for pain relief, and to some extent it was. Since quitting said antidepressant I have become depressed. I feel like it has completely changed my personality and I'm miserable. Is this caused by the withdrawal process, a month later, or did the medication permanently change my brain chemistry? I hope it's option A.

I am going to take over my heath care and personally figure out what works for me since I have never found a doctor willing to help me do so. I have found natural supplements for fibro relief and have already started taking one. They're natural, affordable, and I have a feeling they can't ruin my life more than an antidepressant could. I'm going to stay on my prescription Lupus meds as well as my sleeping meds. I'm going to start taking natural muscle relaxers and use my oxycodone sparingly.

Do you think it's a bad idea to be your own healthcare specialist? I'd like to hear your thoughts on self medicating/supplementing.

Maybe one day I'll be able to find some real help, obviously after I get reinsured because most doctors who are knowledgeable refuse to see uninsured patients. I can't tell you how angry this is making me. Where is the help for people who really need it? I just don't understand.

Weekly Happies #1

One of the best ways to feel physically and emotionally well is to reflect on positive things that happen in life. I like to think that even though every day might not be a good day there is definitely something good in every day, so with that theory in mind I am going to start doing a "Weekly Happies" post.

I'm going to try to take pictures of the little things that make me smile and write down bits and pieces of my day that make me happy so I'll essentially be sharing my positivity journal with you all.

Since Monday was a holiday my Family (minus Sebastian and Parker) went on a little drive. We planned on having lunch at Lake of the Woods but it was way too cold so we just ended up driving around eying up nature and eating our sandwiches and fruit in the car. We stopped a few places and walked around. We also found a totally random organic grocery store in the middle of nowhere. Here are some pictures from our excursion (my Mom isn't in any of them, sadly):








My Dad and I randomly decided to go to Medford on Wednesday (the next big city over, which is about an hour and a half away, where we go to do any fun shopping) and spend some money. We had a great trip. We talked on the entire drive there and back about everything. I managed to feel pretty good the entire time, although I was pretty exhausted by the time we got home. We went to the military surplus store and picked some things up for my Dad (he's a 2nd LT in the local chapter of the Civil Air Patrol), Target (where I got a throw pillow and a pack of awesome pens – sounds like boring finds but I'm pretty happy about them!), Ulta, and then did a little grocery shopping at Trader Joes. We had a lot of fun.

The pillow I picked up at Target leads me to another happy – I am totally content with the way I have my room decorated now. Since I spend so much time in my bedroom, which also functions as my office/living room/everything room, I really want it to look pretty and make me happy. I'm very happy with the way it looks. It makes me feel comfortable and cheerful. Here are some photos:








I finished reading a pretty good book, albeit not something I would normally go for, called Far, Far Away written by Tom McNeal. It was a little weird but I enjoyed it.

We started watching Season 5 of Breaking Bad and I can't wait to see how the show ends even though I know I'll be super depressed when it's over. Season 4 was so good and even though we are only on episode 3 of Season 5 I'm a little bored with it but I know it's going to get better! I think I'm a little bit in love with Jesse Pinkman and a lot in love with Aaron Paul.

I'm also obsessed with One Direction and their Midnight Memories album right now. Don't judge me. I know I'm old and they're young, but whatever.









Other things that have made me happy: hot Epsom salt baths, the sunflowers sitting in a vase on our dining room table, carrot juice to start my day instead of a cup of coffee, and shopping/getting amazing deals with my Mom on Saturday (she got a pair of $110 shoes for $37 and I picked up yet another throw pillow).









There are also a lot of other things that made me happy this week but this is just a small sampling of the things that make me smile.

Crazy Brain Chemistry

I try to keep my Facebook status updates as positive and upbeat as possible but I think this is the place where I should just let it all out. Every time I think I'm getting better I am only reminded that I'm wrong.

Last Friday was one of the worst nights I have ever had the misfortune of experiencing in my almost 27 years of life. My pain was so intense I could hardly even breathe. I hurt everywhere, inside and out. I cried hysterically for a few hours while my parents held me and comforted me. I ended up calming down after a full Valium and a Percocet (normally I just take half pills) and sleeping through the night.

My emotions, since quitting Cymbalta, have been so insanely up and down. I never had issues with my emotions before but now I'm sad and bawling one second and laughing uncontrollably the next. I'm getting angry and then indifferent within a matter of seconds. It's so crazy and incredibly embarrassing.

My Mom and I are now working on the process of appealing the insurances denial. Hopefully they will change their mind because I have had to quit another medication as well and all of them will be so much more affordable with insurance. I can go back on Cymbalta if they reinsure me because the copay will only be around $40.

However; do I really want to go back on a drug that has made me this miserable without it? Does that even make sense? If I do start it again I have to realize that it will have to be taken for the rest of my life, because if I quit I'll just have to go through all of this again. Here I am, stuck between a rock and a hard place. Is it worth it to take a medication that makes me sort of better, but not very much better, and worse without it because of it affecting my brain chemistry? Hmm… I guess I'll just have to wait for the insurance to make a decision before I can make mine.

Kassism #2

Sometimes when I stand up I am only able to walk a few feet before I collapse and fall on the ground. As is the case with my speech, which I talked about in my last post, sometimes it's funny and sometimes it's not.

Half the time I manage to say, "Oh, here I go" before tipping over. I'm serious. I say those exact words; although sometimes I do say "oops" instead of "oh".

I rarely make it to a chair. Luckily, this only really happens at home. I have, on occasion, done it in public as well though. When I'm out and about it seems to happen less when I stand up and more so when I have been standing or walking for a while. Sometimes I just have to take a seat, regardless of where I happen to be at the exact moment. For example, I had to sit in the middle of an aisle at Staples the other day.

Speaking of Staples, here is a fun fact – I worked at Staples for a month when I was in college (it sucked!) and I actually fainted thanks to Mono and hit my head on the way down. It was super scary! I can trace back a lot of my health problems to that time though. Mono often acts as a trigger for more serious conditions, particularly the condition in question – LUPUS!

Kassism #1

I came up with the idea to do a little series of random things about my illness that are kind of obscure and you may not know. It's easy to google symptoms and get an idea of how this all works but there are a lot of things that just don't get included on the wikipedia page or WebMD. I thought it might be kind of fun (that word is being used very loosely here, because how fun is any of this really?) to post a short little blog series featuring weird things that my body does. I'll start off with one of the most obvious ones, my speech.

I make up my own words and speak my own language thanks to severe aphasia. I get so frustrated trying to find words that I just let whatever wants to come out of my mouth come out. Thankfully my parents have learned to understand my language, although I honestly have no clue how because half the time I don't even know what I am saying. I seriously speak weird gibberish and they can decipher what I am saying. They're amazing.

The weirdest thing is that I can hear what I'm saying and I know what my brain is saying but can't understand what my mouth is saying. I always start out with the good intention of speaking actual English and I get really angry. I have learned to take a second when I'm done spewing nonsense and try again. Sometimes it takes me a couple of tries but I always get there eventually. Sometimes I end up kind of yelling random things until I get it, which is embarrassing.

When I am capable of forming actually words I have a problem coming up with what things are actually called so I call them something else, which is usually more complicated and difficult to say than what it actually is. The following are examples:
"Vacuuming the grass" – Mowing
"Dishwasher for clothes" – Washing machine (it honestly took me about 5 minutes to think of the real word for this one)

These are just a couple of the Kassie-isms that I use daily. It has only gotten worse as time has passed and I have made the mistake of just going with the Kassie-isms. I think it would be better for my brain if I worked it out, regardless of how long it takes, and come up with the actual name of things. I should make more of an effort from here on out.

Sometimes it's funny, sometimes it's not. The next Kassie-ism post will be a lot shorter, I promise. See you then!

Detoxing

I was lucky enough to be insured through my Mom until the age of 26 and then I was granted a 6-month extension because my doctor wrote the insurance company a letter telling them that I needed to keep the insurance to have any quality of life. After the initial 6 months the insurance company requested more information from my doctor and decided to drop me completely. The crazy thing is that my family makes too much money for me to qualify for any assistance but not enough money to be able to afford my healthcare costs. I personally have $0 as an adult so I don't really get the whole thing.

Moving on to the topic of what I want to discuss in this blog - I was on Cymbalta, although it is an antidepressant mainly it is also an FDA approved drug for fighting Fibro pain, and it actually went generic in January so imagine my shock when without insurance the little bottle of pills cost more than $200. Add onto that the cost of my other meds and the total was closer to $400 than should be possible.

My parents are wonderful and kind people who take care of me because they love me and I'm so grateful but I couldn't ask them to continue paying for a medication that is so expensive so I quit. I originally tapered off by taking my Cymbalta every other day but I felt as though that was just drawing out the inevitable withdrawal.

Google Cymbalta withdrawal right now; I'll wait. I apologize in advance if what you read gives you nightmares.

I have never felt worse than I have during this past week while detoxing from Cymbalta. I'm not through it yet but I keep telling myself that things will start to get better soon. They have to, right?

I'm in constant pain thanks to my illnesses but the pain I have been experiencing while withdrawing is just beyond anything I have ever imagined possible. I'm sick to my stomach. I have been having terrible brain zaps that feel like someone is hitting my brain with one of those thick rubber sledgehammers, and then that feeling reverberates through my entire body. I actually call it "gong-ing", because a gong gets hit and then resonates. I can't even begin to explain in writing what my body is going through. Every inch of my body, inside and out, hurts. Let's not even talk about the tremors and the spasms!

All I can do is sleep because when I'm sleeping I don't feel so bad. I do eat, but then sleep follows shortly after. I don't even have the strength to shower.

I called my doctor and he told me that he could prescribe another antidepressant to get me through this but that the withdrawal would end soon if I didn't want to take that route. I've been drinking a lot of hot lemon water, taking hot baths with Epsom salts, and taking a Valium when I can't handle it.

I'm not sure what the point of this blog post it. I don't want pity. I guess I just needed to share. Also, I think that doctors should give you a warning of what happens when you decide to quit taking a medication. I fully understand why there are so many drug addicts out there who can't stay clean. It hurts!

Through it all though, I'm still totally happy and in love with my life. I'm so grateful for my family who supports me with all of their love and understanding. Things will only get better from here!

Also, please forgive any spelling and/or grammar issues in this post. My brain isn't working all that well at this point in time.

I had one life before getting sick and I have a completely different life now.

Last night I was in tears for hours because of the pain. Crying does nothing to relieve the intense feelings of pain but sometimes I get so overwhelmed that I can't do anything else. I'm so lucky to have parents who understand what I'm going through and give me all of their strength and love. I couldn't do any of this without them.

I'm feeling only slightly better today, but the way I'm feeling prompted me to get back into writing this blog. I put Beautiful Basics before this blog but I'm back now and hopefully I will feel well enough to keep up with both of my projects.

I think it's only appropriate to talk about the symptoms I experience in my life due to the Lupus and Fibro. It's important to understand that having both of these illnesses makes each one more difficult to tolerate. My Lupus makes my Fibro worse and my Fibro makes my Lupus worse. It's a vicious cycle that is extremely difficult to get out of and it turns my body into its own worst enemy.

Just a heads up, I'm not writing this to make you feel sorry for me. I don't want sympathy, but I do want you to understand.

Chances are, you have known someone with Lupus or heard something about it. Some people are capable of having totally normal lives with it while others have more severe cases. There are many different symptoms and each person can have a totally different experience with the illness; the same thing goes for Fibro. Each of these illnesses are completely unique based on the person they reside within.

I'm only going to graze the surface today, and we'll get more into depth with my personal symptoms at a later time.

Let's start with the Lupus, shall we? Also known as Systemic Lupus Erythematosus. The Mayo Clinic defines the illness as "a chronic inflammatory disease that occurs when your body's immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs."

The following graphic is amazing because it sums up the symptoms of Lupus in a much easier to understand version than I can even begin to articulate. Which ones do I experience? ALL of them, with the exception of the butterfly shaped rash across my cheeks and nose. I do get a rash on my skin when I'm out in the sun but do not have the typical, constant facial rash.




Extreme fatigue, check. Severe headaches (AKA migraines), check. I have a constant fever and the sore, painful, achy feeling that a regular person may experience when they have the flu. My hair is falling out, although my Doctor put me on two medications that have helped and I now have a ton of new hair growing in. I have Raynaud's Syndrome, which means my hands and feet turn blue/purple and lose all feeling in them when cold. I often have to put my appendages in hot water to regain feeling. You get it; I have all of the above.

Moving on to Fibro now. I found another helpful infographic. Again, it's pretty much all of the above. Let me add that both graphics forgot to add anxiety and depression.




My illnesses affect my brain more than any of my other organs and therefore cause me to have stroke and seizure like episodes. I shake and tremor and have muscle spasms. I can't even begin to tell you how many times I have broken glasses, dishes, or thrown things accidentally. I have a really hard time speaking, understanding, comprehending, and problem solving because of it. I joke around that I used to be smart, and I'm not anymore. I speak my own language these days and fortunately enough my parents have learned to decode my aphasia-riddled sentences.

I think I'm done for the day. My fingers are freezing and it's becoming ever difficult to type with the icicles that are attached to my hands. I'm hoping to post once or twice a month of this blog, so I'll see you next time!

So it begins...

In November of 2009 my life changed forever. It sounds dramatic but it's the truth.

November was a big month and looking back now it makes total sense why my illness chose to present itself when it did. The two biggest factors being my Dad having a 5-way heart bypass and me being fired from my job of two years on the day that I returned to work after his surgery. Even though everything went smoothly with his surgery it's still heart wrenching to see one of the people you love most in the world lying in a hospital bed with his chest cut open, and then to come home and lose the job that I loved.

Of course I was stressed out and concerned with what would come next but I've always been a firm believer that everything happens for a reason. I knew that things would start looking up soon so I tried to keep a positive outlook. Towards the end of the month, however, I was feeling exhausted so I laid down on the couch before dinner.

I was aware of what was going on around me but when my family called me to the table for dinner I couldn't move and I couldn't speak. My body wasn't working and I was terrified. I didn't know what was going on. Finally, my Mom came over to where I was laying to see why I wasn't responding and I burst into tears.

I regained the control of my body but it was such a scary and confusing moment for all of us. Obviously the moment was weird but we didn't think that much of it until the next day when my Mom and I went to the grocery store. The Earth literally began to shake, my vision changed, I couldn't hear, or speak coherently, and I was dizzy. It was all happening within my body and I couldn't understand or explain what was happening.

This event led to a trip to the doctor where all parties involved believed that I had had a stroke. This ignited the long process testing which included a plethora of blood tests and brain scans. Everything came back clear. I had no signs of stroke (although my family and I still believe I've had a TIA or two), no masses growing in my brain, and nothing in my blood that would prove to be bothersome.

Life started getting back to normal, somewhat, and I decided to take some time off from working and wait until I found something that I really wanted to do. The end of the year and beginning of the next flew by and I had not been feeling well so I was still visiting doctors and trying to figure out what was going on with my body with no answers being given along the way.

In February I found a job, which I was unable to do due to lack of energy. My body and my brain were just too exhausted so I had to quit the job after almost a month. At the same time I went and visited a neurologist. I was hopeful that he could tell me what was wrong with me and suggest a course of treatment that could get my life back on track.

He ended up not listening to a word I said. He had diagnosed me before I even walked into his examination room. He told me I had been experiencing Hemiplegic Migraines, which translates to "half-paralyzed migraines". This sort of made sense because I have gotten migraines since I was 17 and would also explain why I had been paralyzed in November. He put me on a few different medications and I was overjoyed because I thought I was on the road to recovery.

Turns out the medication he put me on made me sick. I went back and told him how it was making me ill and he increased the dose. That makes sense, right? He refused to answer my questions or offer any helpful advice. One thing I've learned in my life is that you have to be your own advocate when it comes to your health so I went back to my primary and told him I wanted to see a different neurologist.

I did my research and found a doctor in the next city over who was supposed to be amazing. Not only had he been practicing for years and years but he was also the head of the Neurology department at the Oregon Health and Science University in Portland. He had to be smart, right? And since he specializes in children's neurology I figured he had to be kind as well, which is really important in my book.

He turned out to be such a spectacular doctor. He ran many tests and while he originally thought I had MS or a brain tumor he luckily didn't find anything out of the norm. He did something at our last meeting though that changed everything for me. He looked me in the eye and said, "I want you to know that I believe you. I believe that you're sick and something is wrong with you. You're a 23 year old girl with better things to do than be sick." In a story filled with doctors who didn't believe me, his words made me feel so much better.

I forgot to mention that throughout this entire process I am gradually feeling worse and worse. I just didn't feel well. I couldn't speak normally. I couldn't form sentences or come up with proper words to describe things. My entire body hurt, inside and out. I was tired all of the time. I used to be smart, but I felt that I was just getting dumber and dumber. I also smelled things that weren't there, tasted things that I wasn't eating, and had strange phantom feelings. All of my senses were wrong. It was awful.

After everything came out fine in the neurology department I went back to my primary. He looked me in the eye and told me that nothing was wrong with me and that he thought I should seek psychological help. That moment was the most devastating thing to happen to me in my entire life. I was mortified, and made to feel small and stupid. I held my act together while in his office but burst into hysterical tears once my Mom and I hit the parking lot. I still get emotional when I think about it and I hope that none of you are ever made to feel like that, because no one deserves to be treated that way.

I went home and immediately began the search for a new primary. I refused to return to the doctor who made me feel bad about myself. I found an amazing woman who wasn't actually a doctor, but a Nurse Practitioner. She listened to, and heard, every word that I said and ended up fighting to get me into the best Rehumatologist's office in Oregon because she believed that I had Fibromyalgia or Chronic Fatigue.

I ended up getting approved to become a patient of his and have been seeing him ever since. He's an incredible doctor who has written a book on Fibromyalgia, gives speeches on the topic, and actually has the illness himself. He ended up diagnosing me on my second trip to see him. Finally, after all this time, I had the answer. He believed me and he wanted to help me. The answer, Lupus and Fibromyalgia.

He's been treating me for almost a year now and I'm on 7 or 8 medications. I'm not better but the medicine is helping a little. My doctor has told me that the reality is I will never be completely better but I think I can say I'm at least 30% better than I was before the meds. I have bad days and good days, but most days are just okay. I hurt and I feel drained all of the time but I'm thankful to be alive.

It's hard having an invisible illness. When people find out I'm sick they often say things like "but you don't look sick" or "why don't you just take a nap if you're so exhausted?" I often feel like people judge me and I know that other people with chronic illnesses do as well. In this blog I'm going to share stories about my journey with chronic illness and I hope you can learn something from it or just feel better about your own experiences.