Thursday, April 30, 2015

An Insurmountable God Complex - Health Update

Where do I even begin? What was supposed to be a beneficial meeting of brilliant physician minds to asses my future, became a pitiful high school clique, pinning doctor against doctor. It honestly surprises me, the complete and utter lack of care towards an individual due to an insurmountable God Complex. But I am getting ahead of myself, let me start from the beginning.


Last I left off many of you were wondering where my future was to be directed. After receiving less than pleasing test results, and a grouping of debilitating new symptoms, my team had scheduled to meet and converse about the next step in my treatment. Drastic measures were now to be taken as vital organs have began to be heavily effected by my disease. I received the call early Tuesday morning from my Pulmonologist, unfortunately, things did not go as planned. While many members of my team from the University met and discussed new treatment options, a key player decided not to attend; my Neurologist.... Apparently to busy to even respond to the request to meet. My Pulm told me that the meeting did not result in any solid new plans because so many pieces of the puzzle were still missing, that it would take at least another week to consult with the rest of my physicians. In the mean time I was to again play the waiting game and return for yet another PFT in four weeks time. Of course at hearing this news I shared my distaste for that plan. I have too long sat and watched my body slowly die; I was not about to do it again for four more weeks. He expressed his sincere apology, and acknowledged that the situation was not ideal but, in the meantime he has scheduled me an appointment with my Rheumatologist for Thursday afternoon, is working on moving up my next Rituxan Infusion, and hopefully get in contact with my Neurologist. At this point I just sighed, agreed, and hung up. There is really nothing I could physically due to change the situation as I am not the one with the PhD and prescription pad.
That afternoon I had an appointment with my primary care doctor as she wanted to see me after all the testing at UW and the recent ER visits I have accumulated. She was very displeased with my lack of progressed and wanted to preform her own tests. She was very worried about my exhausted and heavy breathing. Upon a 6 minute walk tests in her office building my oxygen saturation dipped dangerously low, plateauing at an 86. Any reading 90 or below on a Pulse Oximeter requires the patient to be given supplemental oxygen. While we could not verify this reading was 100 percent accurate due to my serve Raynauds, she was not willing to take that chance due to my obvious respiratory distress at the time of the reading. So now upon sleeping, or any physical activity I will be hooked to a portable oxygen tank; Yet another apparatus to tote around.
Skip forward to Wednesday morning and I receive a call from none other than my ghost of a Neurologist. The call was frank, and down right offensive. After not bothering to respond to the meeting request from my other physicians, but apparently sending an email to my Pulmonologist expressing that I have been 'making up' my illnesses (including my near death GBS episode in December), she decided to share her thoughts on my 'mental status'. She started by announcing that my PFT results were fine and nothing is wrong with my lungs, or diaphragm. She also told me that I really "don't have that much going on" and I was probably just stresses because I am not getting enough sleep. She said that there is no way I have an underlying neuromuscular disease because my test results are fine and I probably just need an "anti-phycotic" to de-stress and relax. Her last punch was to let me know that the Headache Clinic she refereed me to over two weeks ago was actually not accepting new patients so I just needed to "work through it." Once I gained control of the rage that was building inside me at her completely inappropriate comments that not only demean my mental stability, but those of my other physicians, I conveyed my strong disagreement to her "thoughts." How incredibly degrading, and hurtful this woman had treated me, not to mention deliberately attempting to discredit my mental capacity by expressing my disease and serious illness are all in my head when test results obviously show otherwise. Needless to say I will never see, nor speak to that horrid woman again. I am appalled by this physician. I quickly called my Pulmonologist to disclose to him what had happened, thankfully, he was just as appalled as I was. He said he even sent her an emailing expressing that yes, I was in-fact seriously ill, and yes I do have poor test results indicating the failure of my diaphragmatic muscles, and that frankly, she must have not even looked them over if this was her beliefe. He advised me to search for a new Neurologist to which I happily obliged. While I wait to locate a new Neuro, and hopefully a new headache clinic, we have ordered a brain MRI to check for a suspected central nervous system malfunction, amoung a few other things.
So it seems I will leave you all in the same place I left off my last health update, smack dab in the middle of another waiting game; my future hanging in the balance. At least now I have a small task to occupy my time, oxygen to assist my breathing when needed, and my prescription finally filled for Cymbalta to relieve my growing Fibromyalgia pain. Hopefully things will begin to look up with the absence of stone cold, inhuman physicians who are unable to cope with the reality of a situation on my team. 


Sunday, April 26, 2015

Get Email Updates! Corrected.

Hello Readers!
It has been brought to my attention that many subscribers to the "Get Email Updates!" widget, located on the right hand sidebar of the blog, have not been receiving their updates via email.
First, I want to verify that those subscribers followed through with the activation email sent to them after subscribing. This email comes from 'FeedBurner' and may have ended up in your spam or junk folder, please check for this email and hit the activation link to start you email updates.
These updates will come in a different format than my previous blog. They will be an email version of an entire post.
They will come to your email overnight, as opposed to right after publication; unfortunately I do not have option to change this feature.

If you have already completed the activation process and are still failing to receive emails I will from now on be sending out a link from my CaringBridge when an updated is posted here on The Tube fed Wife. There will be no content on the CaringBridge journal post, just a link that lets you know I have published a post with a direct link to this blog.
I am sorry for any inconvenience! Please be sure to once again check your spam/junk folder, and if all else fails, please subscribe to my CaringBridge for updates on this blog.  Chanel White's CaringBridge Page


Friday, April 24, 2015

The Sea Leads to Many Places - Health Update

Sitting at her vanity, a young woman who was bound to wed a man she did not love cried silent tears as her maid gently combed through her hair. The young woman looked up to her caretaker and expressed that she felt like she was being swept away by the sea, her life caught in a current that she did not want to follow. The kind maid looked down at the young woman and said, "The sea leads to many places dearie. Maybe you'll land somewhere better." Times in my life I feel I relate so well to this young woman. My life is an aggressive, and powerful current. Trying with all my might to kick and swim away is useless, it just carries me like a helpless child. I am lost with no direction, and I have no choice but to let the current take me, hoping I land somewhere better. When you become seriously ill your life is no longer governed by desire, but a force out of your control. You become a slave to something you never sworn your allegiance to; no longer making decisions for yourself. You have no choice but to attempt to endure, and pray for an outcome in your favor. Everything you planned for your life now washed away with the tide.

Even though I prepare myself mentally for realistic news, it still seems to shock my system when I see a test result come out so poor. Those numbers on a page cant possibly be me. You think you can prepare yourself for your down fall, but reality is it still stings. The last month my doctors have been keeping a very close eye on my Respiratory System. While a typical MCTD or Scleroderma patient receives a Pulmonary Function Test every six months to a year, I am currently receiving them every four weeks. My results yesterday were so poor that my Pulmonoslogist actually had me re preform the test immediately in his office after reading the documentation. I have over the last few months found myself unable to expel forceful volumes for sometime now. My last PFT four weeks ago showed that my respiratory muscles were functioning at a mere 34% while my current PFT shows them now functioning at 18%. That is quite a considerable drop in four short weeks. Due to this inability to move my muscles my Forced Expiratory Flow has also dropped significantly 85% to 55%. The Forced Vital Capacity of my lungs however is still at a high enough rate to give me adequate oxygen, I just am unable to expel anything should I come down with a cold. That puts me in a very dangerous predicament that required immediate attention; the respiratory muscles are vital to your lungs function. We briefly spoke about getting fit for a BiPap in the near feature so I do not suffocate in my sleep. The quick progression of these recent respiratory issues lead my doctor to believe I have a underlying severe Neuro-Muscular disease that we have failed to diagnoses.
I seem to have developed serve photosensitivity, accompanied by some Central Nervous System issue within the last month as well. My entire block of appointments yesterday had to be held in the dark as I now have such a serve reaction to lighting. I have had to remove lights from my home, and am even unable to shop at specific grocers due to their lighting choices. This issue is becoming extremely debilitating and leaving me almost completely home bound. Accompanied by this odd new photosensitivity I am experience cognitive difficulties, what many like to call "brain fog." It has gotten to the point where I can no longer remember words, jumble my sentences, and seem to be having quite serious issues with memory. Alongside by the brain fog comes debilitating head pain. Head pain that does not follow a pattern of migraine, tension, pressure, or cluster headaches. This pain is unlike anything I have felt, but is similar to the pain of a leaky spinal type, or meningitis; both things I wished to never again endure after my hospital stay in December. This head pain feels much like heavy lead is slowly being poured into the back of my skull, then forcefully slammed against the wall repeatedly. They have become so recurrent and intense that I have landed in the ER multiple times this month due to a lack of sleep and sheer unimaginable pain; unfortunately this headache is completely resistant to any painkiller. This leads my doctors to believe it is a malfunction of my nervous system causing the cranial pain and cognitive dysfunction. Last time I had to attend the ER they were at such a loss the doctor make the executive decision to just sedate me with Fentanyl so I could rest. Needless to say, no one should live like this.

After consulting with my doctor, and a mess of other physicians for almost a full 5 hours yesterday we decided that it is time to take more aggressive measures with my illness. Many of the medications and treatments I am currently on are the top of the line medications... thought to be "the last resort." He clearly stated that we need to look higher than that, and it may be time to move forward with more experimental treatment options. He explained to me that he will be calling a "conference" with the other physicians on my team as soon as possible to discuses where to go from here. He is hopeful that between the many brilliant minds they can create a new plan to suppress this disease before it takes anymore from my already fragile body. While I cannot disclose exactly what treatments they are considering as I do not know them yet, he did mention a few devices such as pacemakers to assist function, aggressive chemotherapy, or possibly even a Stem Call Transplant down the road. As of now I must play the waiting game as my physicians meet to talk about my future.


Wednesday, April 15, 2015

Glowing - Health Update

I finally received my AMT Mini One Button tube on Monday! My incredibly GI doctor squeezed me in between her already scheduled patients so we could place my brand new tube. For those of you who were following my previous CaringBridge Blog you know how much trouble my awful Mic-Key Button was been giving me. This AMT brand is suppose to be a more "hypoallergenic" option that is specifically contoured for a stoma. The balloon which anchors your tube has a larger volume capacity which helps prevent leakage and provides a tighter, more customizable fit. This tube is also much more low profile than the Mic-key, and is much more flexible. Immediately after placement I could feel the difference! This tube fits snuggly to my body, where as my Mic-Key was set high above the stomach. This tube also seems to move with me, instead of constantly flopping around.
If you are interested in the logistics between these two tubes please visit: Mini One vs. Mic-Key
I am very excited to see the difference this tube will make in the next few weeks! The swap went much smoother than previous times as well. The last few tube changes have been very painful, even though I have a deflatable balloon. This change seemed to go flawlessly with very minimal discomfort... though I will never fully get used to having a device pulled in and out of my organs. My doctor seemed to be very impressed with the AMT tube, hopefully she can now refer other patients to this brand if they begin to have trouble like I did. She always tells me I am teaching her, which makes me feel very helpful! I have so much respect for my GI, she truly does believe that a patients know their body best, and even lets me make decisions about my care. I could not have asked for a better doctor!
The best part about this new tube is the amazing glow in the dark feature! This tube is typical used in pediatrics so the creators decided to make the tube and extension sets glow for easier night time access. Such a stroke of genius! While I don't necessarily need the feature, it sure is fun to have!

Wednesday I had an appointment with my Scleroderma Specialist from UCLA. He comes to Seattle once a month to see patients, and I am one of the lucky few he accepted. This doctor is extremely knowledgeable, and also very frank. He is an 'all business, no smiles, trust no one' kinda guy... But he is the best! I really enjoy our sessions; he is the first doctor I have ever encountered that really drives a strong treatment plan! This appointment we talked much about the lack of testing that has been done recently on my effected organs. He was very displeased that UW had not kept up on my Echocardiograms, GI Tests, and a few other procedures.
He ordered quite a few tests that he would like done ASAP as the ones I have on record are at least a year out of date. His exact words were something like, "There is no way your results are this good. Either they are just too old, or they ran the tests wrong." Like I said, all business... lol
He also ordered some medication dosage changes, and prescribed a few new medications. We will be upping my Rituxan Infusions yet again to two rounds every 12 weeks, as compared to one round every 12 weeks. My next set of infusions will be late May, early June.
We covered my dry mouth/eyes (AKA Sjogrens) as well which has gotten quite out of hand. At this point I am using lubricating eye drops about 4-5 times a day, and must always keep water near by or I am completely unable to swallow. We will be starting a nightly dry mouth gel to help keep my teeth from rotting hopefully. My scalp has also been acting up, leaving a wake of bloody scabs and hair loss in its path, we still are not sure what that is all about. Urg.
I was given a prescription for my severe muscle pain and tightness (AKA Fibromyalgia) called Cymbalta. I am a slight bit apprehensive to take this medication as it is also a very powerful anti-depressant. I have heard wonderful patient stories about its success with pain management, but also horror stories about withdrawal side effects once they wanted to discontinue the medication. At this point in my medical journey I am willing to try. The pain I have been enduring lately has kept me bed ridden and I am ready to get the 'pep in my step' back.
So to be honest, I am not exactly where my doctors were hoping I would be. These repeated tests will give us a better idea of where I stand, but from the viewpoint of today I am not in the greatest shape.

Next week I go in to repeat my Pulmonary Function Test which will show my doctors if my diaphragm has gained back any of its function. If not I will be sent to a Musculoskeletal Pulmonologist to review my options. While I am not 100% sure what those options are, a diaphragmatic pacemaker, and chemotherapy was mentioned... But I am not going to worry about that until I get the results next Thursday.

Since I always like to try and end these health updates on a positive note, I do have some exciting news! This Thursday morning I have been asked to speak at a local high school as part of a fundraising project. I will be sharing my story, and a little bit about Scleroderma. I am so excited for my first "official" public speaking role! I cannot wait to let you all know how it goes.
I have also been asked to speak at an upcoming Autoimmune Seminar at a local University. I will be part of their Patient Panel and sharing my knowledge on "Chronic Illness in the Work Place." I am so excited to see these doors opening after my last door was slammed shut so quickly. Disease has taken so much away from me, but it has given me so much more! My goal is to make a difference in this world, and to have a purpose, illness has given me the opportunity.

Saturday, April 11, 2015

Disease: The New Sparkly Vampire of Hollywood


With recent media releases such as: The Fault in Our Stars, Me, Earl & The Dying girl, Chasing life, and Red Band Society, disease seems to have recently stormed the media spotlight. Suddenly illness is a Hollywood hot theme; in one fluid motion leaving vampires that sparkle, ridiculously attractive young werewolves, and supernatural romance in its wake. While many people would raise rejoice in such an occasion, arguing that it brings media attention to those battling medical conditions, the actual sufferers of serious illness are not so swayed. The media portrayal of disease is extremely limited, featuring almost exclusively Cancer.  

Cancer seems to be the only disease that producers have interest in. Why you ask? You can keep the features, the beauty, and the looks of an actress in tact. Cancer is in many cases (though not all) a disease that doesn't disfigure its patient’s body. It remains invisible, a war ragging inside that is unseen to the naked eye. You can portray this illness easily by shaving a head, or adding a medical apparatus. While the actors will never truly understand the heart-wrenching moments these brave patients must endure, producers can absolutely make them look the part. In the Hollywood world Cancer seems to be a disease that only afflicts devilishly handsome young men and women who all face their battle valiantly with sarcasm and humor. Their stories full of "cancer perks," getting away with shenanigans, and young, tragic romance. However, there is little about the actually health journey they are supposed to be battling. These journeys portrayed do not show the horrendous side effects of medications, the days spent in bed to weak to move, unending doctors appointments, and procedures, the loss of friendships, the debilitating mental suffering, or the internal struggle with self worth... but all media portrayals of Cancer do have definite endings, leaving at least one main character dead. Cancer is that type of beast, you treat it with everything you've got and if it works, you are cancer free, hoping for a low remission rate, or it kills you, and your story is over. Viewers like endings.
Think on this for a moment. If a Fault in Our Stars Two was created would you watch it? Before you jump to 'yes' because you loved the movie, know the plot. The plot would consist of Hazel after the devastating loss of her love and best friend, living everyday life as someone who is terminally ill. Probably a lot of Netflix binging, defeating doctor appointments, and worsening depression. Eventually her recurring episodes of fluid filled lungs would increase and she would become bed ridden in horrendous pain that no pain-killer could ever relieve. 
This would last for years before she finally suffocates and dies. 
Would you still want to see it?

No one likes a story that never ends. The viewer becomes agitated, bored, and even uninterested if the plot drags on to long; viewers want a cure, or a quick demise. Unfortunately that frame of mind doesn't just happen in the cinema world, but is an ongoing battle for patients fighting a plethora of different illness. When first diagnosed your support team is like a rock, a sturdy foundation. You have caught the attention of those around you and they are interested to watch your story unfold. Eventually after your 4th, 5th, 6th hospitalization, round of chemo, or surgery, the supporters, cards, and visits from old friends start to fade away.
The world is accustomed to short commitments. Your movie has a plot with no ending, it has gone on to long, and they begin to lose interest. One by one your sturdy foundation becomes shaky and uneven as your support system fades away.
This is exactly the reason why you never see a plot in the media centered around chronic illness; we do not have quick plot line.

You will probably never see Scleroderma, Lupus, Multiple Sclerosis, Mitochondrial Disease, Myasthenia Gravis, and so many others life-altering diseases portrayed in film. Why? These diseases are what you call chronic and degenerative, this means the patient will battle these conditions with no hope for a cure their entire life. Their story never ends. While yes, many of these conditions eventually lead to death; it can take up to 20 years depending on the severity of body systems and organs involved. They can be horribly disfiguring, debilitation, and often leave the sufferer looking like a husk of their former selves, sometimes even unrecognizable. Many are bound to oxygen tanks, feeding tubes, trachs, central lines, and other medical devices, spending a majority of their days in bed. 
Not exactly the best plot for a movie or television series.
Similar to these popular Cancer films we take large amounts of prescription medications, have weekly procedures, surgeries, and tests, attend support groups, struggle with severe pain, anxiety, and depression, mourn over the lose of our former life, and unfortunately must also watch as the friends we have made through similar circumstances die. Many of us actually go through aggressive chemotherapy as treatment for our disease. Not only cancer patients have to rock the bald-head.
Unlike these movie and TV portrayals of illness that have become so popular chronic illness sufferers receive no "cancer perks" as the cinema likes to call it. In our case all we receive are snide comments about how "you don't look sick", that we shouldn't be parking in the handicap spaces, that we are lazy, or that we would be healed if we only changed our diet and lifestyle... hell, we even get told "at least its not Cancer!"
The world knows what Cancer is; however, the majority of people have no idea what beholds a chronic disease sufferer because they have never been exposed to it. Chronic illness takes the lives of its patients slowly, leaving us to suffer drawn out death over a period of years as our body slowly deteriorates. When you are diagnosed you are literally told that these diseases not only have no cure, but many have no solid treatment plans. The best doctors can do is try to ease our suffering and prolong our lives. As I have said before, viewers like endings, not endless suffering. 

I too have indulged in these media portrayals, enjoying them immensely, and even recommended them to those who want a small glimpse into the life of someone suffering disease. As a patient also navigation a fatal illness I can find many similarities, and connect well with the characters struggles. I am in no way stating that these films or TV shows are negative, that they completely miss-portray illness, or that Cancer shouldn't be on the big screen. I am simply stating that they do not always depict illness in all its facets. Just because you see someone’s battle illustrated in a theater, doesn't mean it is accurate of every patients journey. 
Remember when you indulge in a story, whether it be about Cancer, or any disease, that those people in your life who actually face illness are not actors. We do not finish being sick when the director yells cut. We do not get to remove our oxygen cannulas at the end of the set to return home a happy, healthy individual. 

Thursday, April 9, 2015

A Fresh New Start

Hello and Welcome to my new blog: A Day in the Life of a Tube Fed Wife.

I have decided to slowly transition my medical journey from CaringBridge, to something a bit more customizable, and personal. This new site has multiple pages to visit; a Welcome page explaining the reason for this blog, a page for my diagnosis story, and a few pages for information on scleroderma, feeding tubes, and more! I am excited to take my blogging to a whole new level, and hopefully share my insight on living with chronic illness to a broader spectrum of patients. 

CaringBridge has been an incredible resource for me over the last many years and I will continue to manage that site as well, though most of my posting and updates will now be found here.

Thank you to everyone who has supported Noel and I through this journey, and welcome to any new visitors who happened to have stumbled upon my site! 


Love, Chanel