Friday, August 7, 2015

Invalidated and Dismissed - Health Update

I am not going to lie to you all, this week has been utterly exhausting. Resting, Netflix surfing, and doctors appointments were all my body was capable of these past few days... and even those were done half asleep and barely functioning. Pain has been constantly radiating through my body, and every breath feels like brisk morning air stinging my lungs. I haven't slept soundly in over a week, tossing and turning, waking up gasping, or groaning in misery. Life as a chronic illness patient is so mentally tasking. With typical illness such as the common cold, or even a nasty flu, you have the realization that it will soon be over to pull you through each day of torment. With chronic illness you wake up every morning knowing this lifestyle, this feeling of suffering will never dissipate. Fated to live this existence day in a day out with no rest from your troubles. Someday that thought is just to much; it steam rolls your soul.
That thick fog of despair has followed me this week; I am not afraid to admit that. I accept every emotion this disease thrusts into my life... sometimes depression is one of them. I started this blog to express to the world what being an average girl facing serious illness is truly like; to give a glimpse into the existence of someone suffering a fatal disease. I want you all to know that sorrow and grief is part of that life, just as happiness and extreme gratitude is; I am human after all. This week has provided me the realization that I need to reevaluate my medical team. I am at a loss for words after my appointments today... but I will get into that later.

I had a few appointments with different members of my team this week. I met with my Electrophysiologist as the new medication he had me on to regulate my autonomic nervous system was unfortunately causing some very unpleasant side effects. While the medication did its job perfectly, bringing down my heart rate, raising my blood pressure, and stopping my arrhythmias, it caused massive headaches, eye pain, vision changes, and hot flashes. The doctor decided it was doing more harm than good so we discontinued its use. Sadly, that means we are back to square one with Dysautonomia symptoms. He expressed to me that he really would rather not start saline infusions as there is to high a risk of infection through daily port access. I highly disagree with that decision, but I am not the one with the prescription pad so I don't actually get a say in the matter. Instead, he asked me to give him a few weeks to try and locate another therapy.
Later in the week I saw a Sleep Specialist as my insomnia has been wreaking havoc with my sleeping patterns. It has been months since I have gotten a restful night sleep, taking ours to fall asleep, and then waking up every hours or so into the night. The appointment boiled down to scheduling an overnight sleep study at the hospital. They want to monitor my O2 levels, and my carbon monoxide levels since my weak diaphragm may be causing me to retain Co2. They were also worried about sleep apnea being a factor. The test will be preformed next month.

Today I saw my Pulmonologist and my Rheumatologist after repeating a Pulmonary Function Test (PFT) this morning. To put it bluntly, it was the day from hell. Trekking up to the hospital at 7am I had prepared myself for the bad news that I knew I was to receive. I knew my lung functions would be down, and that the results from two weeks ago were in fact accurate... even though my physicians thought other wise. As you may recall during my last health update, my lung function had plummeted, particularity in the DLCO category by a whooping 20%. My doctors stated they thought this was an inaccurate reading at my last appointment, and that I shouldn't be worried.
Well, I have experienced my breathing become more strained, felt the wheezing after coughing or laughing, and struggled with the sting in the bottom of my lungs for months now and finally, after receiving my results this morning, I was proven correct, my lung function had exactly the same diminished function as two weeks ago. "Finally!" I thought! My doctors will listen to me! Wrong.

PFTs are preformed in little glass boxes! 

So many emotions were running through my head; all I could think about was how excited I was to finally have some tangible proof that showed my treatment plan was not aggressive enough, that at 23 years old my organs were failing me and someone needed to take it seriously! (Apparently the need for a feeding tube is not enough...) Since the appointment was so early I didn't have make-up on, was wearing sweats, and hadn't even bothered to brush my hair. I hadn't slept at all the night before, was feeling pretty haggard, and had a rough week; I didn't feel the need to play the "dress up game" for my doctors today. I heard a knock on the door and figured it was my Pulm but to my surprise I had two nurses visit me, the first saying "your results looked great!" and the second asking me how I was "feeling" today. It was like they were feeling out my current mood. It just felt wrong and sneaky, like I was a cannon they were worried might explode.
After they left my Pulm came in and kind of smiled, "Well they look good." At this point I got frustrated. Good? How is a 20% decrease in anything good? I expressed my unhappiness with the fact that this wasn't being taken seriously, and that something was definitely wrong with my lungs. He tried to reassure me that they don't put to much weight on the DLCO value, but I know for a fact that it is one of the golden standard tests in Scleroderma and every other physician I know does weigh heavily on it. We went over in depth my last few PFT where I pointed out multiple decreasing trend results, but each time it was rebutted with "yes, I see what your saying but...."
At this point I started crying, raising my voice, and lost my cool a little bit. Why do they want my organs to fail? Why wont they treat me aggressively? Why do they believe my case is so benign when I have been told it is not by so many other physicians? He was very supportive and understanding, but still told me from a lung stand point that I was doing "just fine."
I truly don't understand how last years value of 85% and this years value of 64% can both be fine, He told me that I could do another chest CT to check for new fibrosis if I was worried. We preformed the CT immediately and came up empty handed; no ground glass findings, or any abnormalities of the lungs. He did talk to the radiologist who said in a particular lighting I show a small amount of opacity which could point to very, very, very early interstitial lung disease, but it was so minimal they didn't even mark it in the chart. So of course now that we have a clear CT my PFT results are even more irrelevant to my doctors. We also checked for Methotrexate lung damage, or a possible pulmonary embolism as the cause but couldn't find one thing explaining why my lung function has dropped. I left the appointment with an inhaler, a possible switch back to an immunsuppressor I have already tried, and a doctor no more worried than when I walked in.
After that appointment my Rheumy arrived. He came in and right off the bat asked me how I was feeling. I took this as a chance to speak honestly; by this point in the day I couldn't hold much of anything back anyway. I expressed that I was feeling un-heard, and un-validated, that my disease wasn't being taking care of adequately due to my lack of skin involvement, that I feel no one is willing to even take into consideration that I have a highly progressive systemic disease, and that I wanted a more aggressive plan of action. Of course I was crying at this point, my emotions were definitely not held back after the long morning I had, had. He nodded and asked me how I was feeling physically as well. I told him about my increase in pain, extra swollen joints, trouble breathing, and about the overall exhaustion that has followed me this last week. He communicated to me after I spoke that while he wasn't invalidating my points, it seems we need to work on my "mood" before we work on anything else, that depression was my real problem at the moment.
In shock I just stared back at him. (are you serious?) I am honestly worried about my progressive and fatal disease and you want to talk about my mood?! I have one breakdown in front of this man (which by the way I believe to be totally appropriate after news like this) and he throws all my physical problems out the window and tells me I basically need to "cool off" before he can help me. I have only seen this doctor three times, he knows nothing about where I was a three years ago, let alone 6 months ago. He didn't see my almost die of starvation last year, didn't see me almost die of Guillain Barre in December, didn't see my go through my digital ulceration phase two years ago, didn't see me as a preschool teacher, didn't see the active woman I used to be... He knows nothing about me! I don't feel he has any right to tell me my "mood" needs to change. Sadness isn't a bad thing, and neither is frustration, without it you wouldn't be human. I have every right to be upset.
I was quite for a long while after this. He did my physical exam and started asking me questions about Fibromyalgia, "Do you know what it is?" He asked. I replied that I had, and that he was actually the one that diagnosed me with it just a month prior. He told me that it often coincides with depression and mood swings and thought maybe I was having a flare. Again, I got quite. Feeling so disrespected at this point I just wanted to walk out of the office.
However, I refused to leave before I asked him the question I had been holding back the entire day: what are my chances of being eligible for the Seattle (HCT) Transplant. I broke the silence to ask. The response I received may have been the single most insulting thing anyone has ever said to me.

"We don't do transplants for Fibromyalgia."

It was like someone had knocked the wind right out of me. Is that what he belittled my fatal disease to? Is that what he believed was my primary issue, pain, depression, and fatigue? To blatantly say that, when it is obvious I was asking regarding Systemic Scleroderma is just offensive! Please don't get me wrong, Fibromyalgia is horrible, I have it severely and it is miserable, but to state that I was asking to have a transplant for a non -terminal illness is maddening, and just plain rude. I looked him right in the eye and said "I am asking about the transplant for my systemic illness that is going to kill me." His reply was handing me a little yellow card with the patient requirements on it and expressing that he has been keeping a close eye on my case and knew I wasn't eligible; that we didn't need to use such a dangerous treatment for my case of Scleroderma.

I don't understand why doctors believe they can treat human beings like this. Have they never faced disease, or trials of their own? How would they feel if someone told them their illness was just "depression" and "moodiness." I am an intelligent, strong individual that does not accept the opinions of others when I know them to be wrong. I am a forceful self advocate when it comes to my health and will not be pushed around. I know my body, and I know there are other physicians who would take my case under their wing and treat my progressive disease as it should be; aggressively. I am a human, and if human emotions cannot be part of my experience then I am not being treated at the appropriate facilities. Today was infuriating so I am sorry if this post is a bit of a jumbled mess. It's mostly just me expressing my rage than an actually health update. lol
Luckily I see my UCLA specialist in two short weeks. Here is to hoping it goes a hell of a lot better than this circus did today. Eight hours spent crying, fighting, and being degraded. I was dismissed, invalidated, and completely unheard. That's eight hours too many if you ask me. Today was enough to prove to me that I am not in the hands I thought I was at this university hospital. Such a disappointing realization.
And for those of you wondering, yes, I have contacted the Stem Cell Transplant team in Chicago and am waiting to hear a response back! I have also contacted other physicians in my area with a bit of my current situation and they are appalled at the lack of treatment I am receiving. At this point I have other patients contacting me with their requests that I immediately get another medical provider. Believe me, I am on it! haha ;) Thank you all for your continued support and encouragement to be my own advocate! No one deserves to be treated like this, but unfortunately for young woman battling chronic illness it is not uncommon. We are surrounded by the "moody fakers" stigma which needs to be broken! I am not a stigma. I am not a statistic. I am a human being that needs to be treated for a serious, fatal illness. Just because I am a young woman with emotions doesn't give you the right to not take me, or my illness seriously! 


  1. You should also see about forwarding your blog posts to the college of physicians and speicalty colleges too. Or if you're not up to it maybe ask a trusted close friend to do that for you. File formal complaints against your specific specialists namely rheumatologist and numerologist scorpion mologist or lung doctor should at the very least get some small amounts of justice so that possibly eventually they will learn to be better doctors and stop doing such heinous things to patients

    1. Using speak to text in order to write my comment sorry about the whole numerologist scorpion Mortal ologist I just couldn't erase them they were too funny but no you know who are they came though

  2. I'm so sorry that your concerns are so dismissed by these clueless doctors. Prayers that you can find great doctors that are more familiar with your disease and will take it seriously, and have compassion. You are wise beyond your years, and even during a horrible week, your writing is filled with grace and wisdom. I'm praying this week is better physically and emotionally for you! Amy :)

  3. I am so sorry for your incompetent and desensitized team, Chanel. It seems like these *specialists* can be some of the most detached, cold people in our lives. It makes me so, so angry. Especially as women, we are listened to so poorly, constantly invalidated and made to feel like an emotional, silly wreck. I have kind of learned to manipulate doctors as best I can, but when they are not receptive, are not aggressive enough, etc. I lose it. I have started crying and getting red in the face so many times because I know they’re not doing what they should be. Most of the time the visit then shifts to whether or not I am stable, have severe depression, anxiety, etc. Just so the doctor feels like they’re providing enough “band-aids” to feel like they’re doing their job, ugh. Just know that you’re not alone—I stand with you in solidarity and so do so many others. You’re amazing. I hope your team at UCLA is 100% because that’s exactly what you need.

  4. I'm wondering what in the world do the doctors think about the fact that you're waking up gasping for air!! What are they saying is the reason for that? It sounds like there's becoming relatively apathetic. They're so stupid. Is that a symptom of "being depressed"?? I feel like doctors act like that when they don't know what to do. Rather than admitting that, they play up the psychological factor

  5. I have RA, LUPUS, SJOGRENS, FIBRO, INTERSTITIAL LUNG DISEASE, & am recovering from mild esophageal damage. I had a specialist who wouldn't listen to me either. I asked my GP for a referral to someone new and he found the best and advocated for my case to be seen as urgent. My health still has deterioration but I have excellent care and moreover nothing I say is ever dismissed as it once was. Yay me for fighting so hard. You keep self advocating until YOU know that you have the best care!

  6. Lol lol, the manufacturer's brand name is Groucho!!! Did you see that?? OMG that is actually pretty darn funny! Look in the upper right hand corner

  7. I am so sorry you experienced all of this. That is awful. I have a couple questions for you: Who do you see at UCLA, Dr. Clements? Dr. Faust? Also, I know a woman who is going through that STEM CT in Chicago. She lives elsewhere and just returned home from the hospital after a couple weeks. Would you like to be connected with her? I have Systemic Sclerosis myself, but am doing pretty well overall. I hate to hear stories like yours and will keep you in my prayers.

  8. Honestly Chanel, at this point in my medical experience. If a doctor does not come off as intelligent or insightful on the first go round, he gets the boot. No one, most significantly you, have any time for anyone who doesn't have an answer.

    Though I don't know what you have done or already have pursued, I would chase doctors who have treated people who are most similar to you. Search on boards, ask about docs, anything with a new perspective. At least it will give you a path to move forwards through in your treatment. And, as frustrating and asinine as this can often sound, I would look at alternative medicine and traditional/homestyle remedies. I struggled with lower GI issues for a very long time, tried every medication, read every scientific journal, understand the in's and outs and debates of pro-biotic validity more than anyone and have taken all kinds of supplements etc. Yet at the end of the day, prune juice steamed down to half consistency /w soup, b12 and vitamin d every morning made me consistently regular again when literally every other thing failed completely. What your going through is nothing like this and i know it's different because your tube fed, but it is just a singular example where the answer to suffering was out there, hidden amongst a seeming mountain of bullshit.

    Also, I don't know if this will help you or just be hard to watch, but check out t if you want to see someone who was put in a similarly abandoned position eventually get better discovering something outside of convention.

    Again if you need anything, i'm at,
    Your unbelievably tough and your struggles are being heard


  9. Please STOP engaging ignorant doctors about a SCT?! You must call Dr. Burt's office at Northwestern YOURSELF and make an appointment!!!!!!! You said you're taking your health into your hands. Please please please. DO THAT. Because these smaller ranking physicians are leading you down a dangerous path and in the end, when you're not eligible for SCT any longer, they will tell you how sorry they are - even sorry that they didn't know enough to tell you to go sooner. But YOU will still be the one having to LIVE their error. Please DON'T live their error. I wish you much strength.

  10. Crap, that was my reply above. I'm so sorry (should have read to the end) - I didn't realize you have a call in to Chicago. I've been frustrated for you for a long time, just hoping you would demand more (i.e., SCT) but I see you are on it. Again, I'm sorry. :(

  11. Chanel,
    That doctor was wrong to treat you like that.

    You ARE allowed to break down. You ARE allowed to freak out. You ARE allowed to be frustrated, and terrified, and angry, and sad.

    You ARE allowed to keep fighting until YOU decide to stop.

    You ARE allowed to FIRE THAT DAMN DOCTOR.


    Stay Brave,