Farewell to May -- Health Update

Another waisted trip to the Pain Management Clinic this week.
I arrived set and ready to undergo an IMS procedure, also known as Dry Needling, that essentially breaks the nerve reception which is responsible for severe myofascial pain. I sat down with the doctor who was to carry out this procedure that involved placing needles along my spinal cord and was told after much deliberation (and a hour long drive) that I was not a proper candidate for this pain relieving treatment. You can imagine my frustration after already being told I was a wonderful candidate just last week! He explained to me that with my history, and especially due to some of the current medications I am on, that this procedure could actually harm my body more than assist it. While I am glad that this physician spoke up, as he was very knowledgable on the topic of pain, I was quite upset at the last physician who obviously did not properly review my record when referring me for this procedure.
I am now back to square one for pain management, though I am quite hopeful I will continue to improve after my first two trial weeks of a Fibromyalgia drug known as Cymbalta. It has greatly assisted my ability to be a functioning human being again! I no longer wake up feeling like I have been hit by a train -- Maybe just a small two door sedan. lol They said the longer I take this drug the more it should inhibit my pain receptors so lets hope for the best! I am on my third week and have seen at least a 25% muscle pain decrease! I believe my increasing of Prednisone due to my recent Vasculitis diagnosis has also helped much of my inflammation, resulting in less body pain. Unfortunately those horrid pills are called "Satan's TicTac" for a reason! They have awful side effects when used in high dosing; my least favorite of which is "facial water retention," also known as "moon face." Basically any cheek bone that I had the pleasure of seeing on my face is long buried! You can see in the picture below I am esentially a chipmunk now... But my awesome friends still take me out in public! lol Thank goodness I am surrounded by awesome people who don't care about my crazy body, tanks, or tubes!

Hello Chipmunk Cheeks!

Next I was off to my GI to follow up on my horrendous case of SIBO. We had a lot to catch up on as I hadn't seen her in over a month! That may have been our longest stint apart in over a year -- Like I said, I see my doctors more than my family. lol Honestly, at this point, they are family! My GI is my rock, I love that woman so much! She has done more for me than any other physician I have ever crossed paths with. We had a great appointment and reviewed some med changes, my nutritional status, (which is poor, but stable) and did some symptom tracking. Since my small intestine transit has halted we are playing with a new dosing of chronic antibiotics as the SIBO will be a re-accruing problem. Since every patients body is different it will be a waiting game to see when my next episode strikes, and then we can decide how establish a proper dosing pattern. At least I know my bum organs are in good hands! The last item of business we covered was my increasing anemia. My iron levels, RBC count, and hemoglobin have been slowly digressing. We are going to take some labs and decide if l need to start iron infusions in the near future, but hopefully my levels will improve over the next few weeks since this episode of SIBO has been dealt with.

Lastly, I saw my Dermatologist to follow up after my recent Vasculitis diagnosis. We spoke briefly about the things I must now keep an eye out for, and what to do during a flare. The type I have is rather rare, so it's a bit of a learning experience for everyone. Luckily we believe my flares should be well controlled with my higher steroid dosing... Fingers crossed that it's a correct assumption! Unfortunately, another side effect of the higher steroid dosing is insomnia, which I already suffer from greatly. My sleeping habits are extremly altered and at this point; I am unable to fall asleep without some form of medication to ease my body into unconsciousness. Luckily a moderate dosing of Ativan normally does the trick.

With this week comes to a close Scleroderma Awareness Month is almost upon us! June is one of my favorite months of the year as the entire Sclero community bands together to spread vital awareness for this unknown disease! Be on the look out for a very special featured post to be aired mid next week featuring one of my Scleroderma Sisters, and fonder of Scleroderma Strong; Jessica M.! You will not want to miss it! If you are in Washington State be sure to Join us for our Scleroderma 5k on June 20th! 

Don't forget to support "Help Chanel Breath Easy!" The link to the GoFundMe page is on the right side bar. Your donations will help get me the medical equipment I need to travel to the Scleroderma National Conference this July! 

Yum Yum Potassium - Health Update

It seems such an incomprehensible existence to have weekly doctor appointments to the average person, but to me that just an accepted way of life. Anything less than two appointments in a week and I am practically bubbling with giddy freedom! This week was suppose to be a two appointment week, meaning I would have five glorious days to myself to enjoy how I chose. It's almost as if my body can tell when not enough is going amiss; when I am not swamped by doctors appointments so it feels it needs to compensate. Wednesday morning I received a call bright and early from my doctor expressing a few blood labs had comeback unsatisfactory and I was to head immediately to the university ER for critically low Potassium (2.9) and Magnesium (1.1). This can be an extremely serious issue as these electrolytes keep your heart beating correctly. Sure enough I started having some pretty serious heart palpitations.  I ended up staying at the ER for almost eight hours running massive maintenance fluids and a few bags of specific electrolytes my body was almost completely depleted of. Luckily everything turned out ok and we were able to get my levels back under control. The doctors believe I had this severe drop in levels due to my very active SIBO (Small Intestinal Bacterial Overgrowth) the last few weeks, so until it is under control, I will need to supplement a few things, and have weekly labs to check my blood electrolyte levels. I am just so grateful it was caught and nothing more serious transpired such as cardiac arrest. 

So thankful for my Port!

The rest of this week will hopefully bring smooth sailing as next week begins another parade of appointments. I will follow up with my Dermatologist regarding my most recent diagnosis of Vasculitis, my GI regarding the SIBO, and have my first Dry-Needling session at the Pain Clinic. This upcoming week will also be my Support Groups first meeting! I am so excited to lead a wonderful group of individuals battling Scleroderma. Hopefully I will have a good turn out, and the meeting will be a success!

A Messy Week - Health Update

When you have Scleroderma your connective tissue turns essentially to stone, imagine your digestive track become like a thick rock, no longer a wiggling spongy soft tract to move food and absorb your nutrients. This is where I run into a problem.
My poor digestive track is so shot that I cannot swallow solid food down my esophagus, my stomach wont empty its contents into my intestines, and my intestines wont empty period. Unfortunately, I am having a heck of a time getting my SIBO (Small Intestinal Bacteria Overgrowth) under control as of late. This condition happens due to a lack of movement in the small intestine, meaning stuff just sits -- and bacteria flourished. Now I know what you're thinking, constipation right? Wrong. Try so opposite that you cant even take a drive in your car without wildly screeching into the nearest drug store parking lot for a restroom. Lovely. Luckily there are special antibiotics that are made specifically for SIBO which is extremely common in Scleroderma Patients. Unlucky for us, once SIBO takes over and your intestines stop, you are on chronic antibiotics the rest of your life. Not so fabulous. The hardcore antibiotic I am on now is like an energy sucker! Man oh man I cant even keep my eyes open half the time. I take at least two naps a day on this stuff so I am hoping to finish this course than get another treatment option.

I had quite a few appointments this week, eight to be exact. Monday I received the results of my MRI which expressed my brain is doing just fine! Woohoo! Unfortunately for me however, this means my headaches are due to muscle memory trauma... Meaning, the headaches are due to nerves that cant seem to forget the serve trauma they endured in December. Essentially I will always have these headaches until my brain forgives me. Not the answer I wanted.

I finally received back the biopsy results from my leg lesions a few weeks ago! It took three dermatologists and two pathologist to finalize a diagnosis. Apparently my results indicate that I have Leukocytoclastic Vasculitis, a very rare and serious disease of the small blood vessels. This disease effects the skin in most patients, but can be systemic, involving organs. Currently we are running tests to see just how deeply it has effected me. This disease effects 10-30 out of every one million people and is said to accompany MCTD/Lupus patients in rare cases. One more disease to add to my list I guess. Luckily, the treatment plan they would start for this disease I am already on due to my other inflammatory issues so no new medications need to be added at this juncture.

Later in the week I met with my Pulmonologist after running yet another PFT (Pulmonary Function Test) and an Echocardiogram to check for heart fibrosis or Pulmonary Hypertension. As of late my PFTs have been showing a serve decrease in my respiratory muscles, it seems that every few weeks I lose at least 25-30% of their function! Luckily this appointment I stayed the same as my last PFT three weeks ago; with the diaphragmatic function resting right around 20%. While this isn't good news, it's not bad news! Small victory! Hopefully this is a direct result of the higher steroid dosing and more frequent Rituxan. My Echo was stable which is fabulous news! All in all, my Pulm appointment went great, though my diaphragm still sucks -- at least its not declining! Hopefully we will receive answers in the coming weeks.

This week was the Evergreen Washington State Scleroderma Foundation Annual Gala! Noel and I had a blast with Family, Friends, and Church members who attended. It was a lovely night of biding, dining, and dancing. I gave a short speech sharing a bit of my journey with Scleroderma for the crowd, and expressed the gratitude I feel for my Support Group. The Washington Chapter members are not only my dear friends, but my family. They have seen me through so many incredibly tough times in my life and for that I am eternally greatful. Late that night we broke it down on the dance floor... Feeding tube, oxygen tank and all!

Photo Booth Fun!

You know me -- Always sharing my story!

Breakin' it Down!

Scleroderma Selfies!

6 Phrases A Chronic Illness Sufferer Would Rather Hear You Say

When suffering chronic illness you become accustomed to phrases one might hear from the uninformed bystander. While these phrases may come with good intent, many are actually quite distasteful for the circumstances we are facing. Phrases such as, "Everything will be ok," "I know what you're going through," and "God only gives us what we can handle," can be somewhat offensive, or even demean the battle we are facing. Here is a compilation of appropriate affirmations someone struggling with chronic illness would rather hear you say.

1. I googled your illness. 

One of the most frequent issue chronic illness sufferers run into is the lack of understanding surrounding their disease. By simply stating you took the time to research their ailment confirms to them you truly care about the battle they are facing. Taking this small glimpse into the symptoms they may be suffering will help you understand the pain and anguish they must endure daily. This simple task will also reveal their likely prognosis which in turn will help the bystander rule out inappropriate remarks such as, "Get well soon" if in fact the patient will not.

2. I have no idea what you are going through.

It is human nature to attempt to relate to those around you, however; when someone is experiences great trauma that you have never encountered, expressing, "I know what they are going through" is not appropriate. The reality is you have no idea what it is like to slowly watch your body deteriorate unless you are personally experiencing it yourself. A chronic illness sufferer must not only face unimaginable pain, but mental turmoil as a consequence of their disease -- this is not something that a simple stomach flu can spawn understanding from.

3. Sometimes it does feel like God gives us more than we can handle.

The truth is, whether you are religious or not, expressing to someone that their situation will never be more than they can handle is distressing. Chronic illness seizes your life and changes everything you knew about yourself. On a daily basis it feels as though the world is collapse in around you; it most certainly feels at times like it is more than we can handle. While it is a nice sentiment to point out that we are tenacious individuals that can handle what life throws at us, it is more comforting to us when you acknowledge the times we feel overwhelmed and lost.

4. I approve of whatever treatment option you choose for yourself. 

Drastic life alteration such as illness are tough enough without input on how we choose to combat them. While many individuals mean well with their herbal remedies, supplementations, or special diet plans, we must decide for ourselves how to handle the situation we have been dealt. If we decide to use western medicine to treat our illness please respect that choice and recognize that we know our bodies best. Attempting to persuade us that we have made a misinformed choice, or took the easy way out, does not generate a positive feeling for us. Remember to consider that our illnesses are complex, and while a diet may have worked for your issues, it may not help ours.

5. I know you look good, but I accept that you are suffering beyond what I can see. 

The most common phrase a chronic illness sufferer receives is "But you look so good!" Many of us face what are know an invisible illnesses, this means that while we may look healthy on the outside, our bodies are raging war just beneath the surface. Acknowledging that we look "good" seems like a positive affirmation but, it can also belittle the battle we are facing for the phrase, "you must be feeling better," normally follows. Chronic illness is like an iceberg, you can truly only see the tip; the suffering below the surface is extraordinarily large. Please recognize that while we look like a healthy individual their is much hardship beyond what you can simple observe in passing.

6. I recognize that everything might not turn out okay.

There is a significant difference between being pessimistic, and accepting the reality of ones situation. All of us battling illness have had to accept our prognosis, or deteriorating bodies; living in a sugar coated bliss will only harm us in the long run. This attitude does not mean we are pessimistic, but realistically facing our trial. When someone in our life is unrealistically positive, speaking of "cures" to disease which have none, it can be considered quite degrading. In a way this frame of mind expresses that our trial is not as serious as we believed, that we are "making up" the severity of our situation. Many chronic illnesses do lead to death, and while conveying to someone, "everything will be ok" is a lovely thought, truth is, it might not turn out that way. Remind yourself to accept the realism of someones illness -- they have no other choice. This realistic affirmation will not only assist the confidence of the valiant fighter battling disease, but will also create a more comforting environment of acceptance for the bystanders when things do take a turn for the worst.

Adventure Is Out There - Health Update

While the first week of May started out pretty rough, it sure did get a whole lot better! Sunday began with a trip to Urgent Care for a horrible rash that had manifest itself all over my lower legs and ankles. It felt like tiny, spiky, scolding hot rocks were attempting to thrust themselves through my skin. The urgent care sent me straight to a Dermatologist Monday morning as they honestly had no idea what could cause these odd lumps that quite frankly, resembled nipples the size of quarters. The Dermatologist didn't have much luck identifying them either. We decided to biopsy a few of the nodules leaving my poor leg looking like Swiss Cheese with its holes stitched. Luckily biopsies are painless during the fact, however, the day after is a whole other story! Ouch. Unfortunately the lab that took my biopsy was unable to identify my spots and have found it necessary to send the specimen out to another lab. More waiting... Just my luck! ;)

Tuesday I was finally able to be seen by the Headache Clinic at the University. The Headache Clinic doctor I met with may have been the most in tune, incredible, and informative doctor I have ever had the pleasure of meeting! She listened intently to everything I had to say, let me explain exactly what I was feeling, and sat patiently while I expressed my frustration regarding the lack of understanding surrounding these headaches. She agreed that these headaches are in fact real, and are very likly due to a neurological issue. We talked about a few meds to assist in pain management, and other more holistic pain options to pursue as well. The most important topic however was what could possible be causing this undiagnosable head pain. She explained to me that there could be many reasons for my serve headaches: 

1. Lupus has effected my Central Nervous System causing possible swelling of the brain. 

2. Due to my serve brain trauma back in December with the leaky spinal tap and meningitis my brain is experiencing "muscle memory pain" which basically boils down to my nerves being unable to forget the pain and reminding me of it occasionally. I guess this is quite common with any body trauma. 

3. The blood patch I received to fix the leaky spinal tap in December may have worn off and I now have a chronic leak.

4. Some autoimmune patients just get chronic head pain, and thats that unfortunately. 

She scheduled a MRI of the brain to rule out a few of the possible explanations. She is highly suspecting option two, but wants the MRI in the slight chance we may be looking at option one or three. I had the scan done late Friday afternoon so I should receive results by Monday of next week. 

Wednesday was my much needed Rituxan Infusion! As many of you know this biologic agent obliterates my immature B-Cells in hopes to destroy my malfunctioning immune system. I receive this treatment every month, along with some much needed IV fluids and steroids. While at my infusion this round I ended up talking to a few other patients on the unit, one who actually had Scleroderma! She just so happened to be there getting her Rituxan, what a small world! It was nice to talk to someone instead of just sitting in my small little curtained room for 5 hours. Though I have such a vast age difference from most patients, it is still nice to meet others fighting a similar battle. The 'fall out' from this lower dose, but more frequent infusion is so much more bearable than the large dosing spread further apart that I used to do. I am still quite beat the day after, but its no where near the hell storm I faced before! All in all, this round went great and I look forward to my next round in June! The best part about Wednesday? I got to wear the awesome shirt I designed on UberPrints.com! Everybody seemed to love it! And in case anyone missed it my first post was published on The Huffington Post Wednesday! Visit the original post here!

Friday my husband took my on a little adventure! I have been pretty much homebound due to my declining health over the last year which has been extremely hard on me. I used to be an adventurous and active young woman who enjoyed exploring the Pacific NorthWest greatly. Hiking, backpacking, and camping were some of my favorite hobby. While Noel is still able to enjoy this great state and bring me back incredible pictures, it's just not the same as experiencing the beauty for myself. I am happy to say that I was able to "hike" for the first time in probably two years thanks to my oxygen tank and some donated Solumbra SPF clothing! Noel located the perfect hike complete with a short hiking distance, and nicely paved trails! I am not 100% sure oxygen carts were made for off-roading, but oh well! ;)

Adventure is out there, even when you're broken! It was quite a wonderful sensation to once again breath fresh mountain air and take in Washington's unbelievable views! I have dearly missed that. While I am paying a high cost today for being so active yesterday, it is well worth each and every pain to truly live! 

A Broken Body & An Enlightened Soul

I open my eyes to a flat bedroom ceiling. Immediately a fresh wave of pain washes over me, gripping my muscles. Any movement is uncomfortable and stiff. I sit up and attempt to stretch my arms; loud cracks ripple from my swollen joints. I slowly lift my hands to my face and loosen the tight oxygen cannula I had secured for the night. I gently remove it and set it to my bedside table. I let my feet hang over the side of my bed remembering not to move too quickly or my weak muscles may bring me crashing back down to the hard floor. After gaining my balance I walk unsteadily into the restroom across the hall, each step sending pain shooting up my legs. I gaze into the mirror; a woman with tired eyes stairs back at me. Her reflection shows someone who has lived through unimaginable heartache, loss, and pain. As my eyes move over her body I see the soft pink scar above her right breast where her Power Port rests just under the skin. I see the baggy shirt hanging freely over her emaciated frame, clearly depicting a bump above her belly button where her feeding tube resides. This woman looks so unfamiliar to the one I have seen staring back at me for the duration of my short life. This woman was so haggard, being kept alive by oxygen, tubes, and chemicals. I carefully undress and turn on the hot water for the shower. My hands clumsily attempt to grasp the knob but do not quite have the stretch left in them to maintain a firm grasp. I reach over to the sturdy shower grab bar and stand silently in the steady stream. Since becoming ill showering has become somewhat of a marathon; sheer exhaustion comes over my body after just 3 minutes into washing my thinning hair. The hot water has loosened my joints enough to travel into the living room, glide a fresh coat of cooling therapy over my aching muscles, and hook up to my 14 hour continuous feeds. This is my breakfast, lunch, and dinner. As the soothing rub dissipates into my skin, and my body begins to slowly absorb the formula, I feel myself become somewhat human again.
At the young age of twenty I found myself diagnosed with an aggressive and degenerative autoimmune disease known as Systemic Scleroderma. My disease creates an overproduction of collagen, a protein found in the convective tissue. Collagen is a building block, the framework really, of the human body. Too little collagen and you would fall apart, too much and you quite literally become a living statue. It was as if someone was slowly pouring thick, heavy concrete into my body through an IV, effectively crushing and solidifying my organs, skin, and blood vessels. Upon my diagnosis I often watched the outside world through waiting room windows and hospital beds, wondering how all the people out on the street below could continue to exist unchanged while my life crumbled at my feet.

Photo Courtesy of Chelsey Shaw Photography 

Illness can seize your fragile existence in a matter of weeks. It effectively shatters the life you once knew, and the body you have become accustom to. Disease knows no age, no race, and no gender; it strikes without mercy. Suddenly you become a slave to a master you never swore your allegiance to; your life no longer governed by your choices. You are left with no other option than to endure. You leave that physicians office after diagnosis with pamphlets to read, prescriptions to fill, procedures to complete, and a new way of life to begin. A Life drastically altered by new limitations you have never before encountered. Your body becomes uncharted territory, and you alone are left to explore its treachery.
When diagnosed with a life destroying illness changes come about in an individual. While yes, many of these changes are physical, there is something that stirs so much deeper. Trials change you in a way that no one truly understands until they must navigate their own. You emerge someone new among the ashes of your old life; you seem to gain an older soul. A soul with life experience well beyond the young years you have lived. Suddenly the world is in Technicolor, everything is more vibrant, and you can practically feel the existence of those around you. You understand that grudges mean nothing, life last but for a fleeting moment, and happiness should be treasured above all material things. You gain compassion for those around you, and are more epithetic towards the lives of others. You begin to comprehend that time is a precious commodity so many waist in this life. You walk slowly and enjoy the view, sit and chat ten minutes longer, and take the lengthy drive past the setting sun instead of hitting the freeway. You fill with gratitude for the little things others may take for granted. You are grateful for the oxygen tank you most tote for it gives you breath; you are grateful for the tube in your stomach for it gives you nutrients, and you are grateful for the Port that delivers toxic chemicals into your blood stream for it keep you alive another few years.

Even though my body continues to fail me, every fiber of my being feels strengthened. I feel like a new woman, more confident and assured in herself, with a much deeper understanding of the world around me. When I look at that haggard face in the mirror every morning, the tired eyes, and the battle scars, I also see a vivacious woman who refuses to give up though she lives in near constant turmoil. This woman is resilient, fierce, and has a passion for procuring life enjoyment, even in a body vandalized so heavily by disease. While I may not get as many years as I was hoping for in this life, I feel my very soul has lived a thousand years. This old soul, enlightened well beyond my 23 years, understands the true beauty in life so many will never comprehend.

A Flare Up - Health Update

I am finally able to provide my readers with a few answers to the daunting questions surrounding my future. While these answers may not be exactly what I was hoping for, at least I now feel like we have somewhat an understanding of the direction my treatment plan will take.
Yesterday I met with my Primary Rheumatologist, (yes I have more than one) he is a kind man who honestly cares for each and every one of his patient sincerely. I always feel I am in good hands upon stepping into his office.

After the topic of headaches we talked about my increase in generalized pain, and other symptoms like dry mouth, scabbing scalp, cognitive malfunctions, and further tightening of the skin. Through blood work we found results indicating that I am most certainly going through a "flare up".  A flare is a term used in autoimmune disease patients indicating their disease becoming more active. The rising of my Sed Rate and CRP levels, with the lowering of my Potassium clearly illustrates that I have heavy inflammation happening throughout my body causing widespread turmoil. This flare is also what is certainly causing the failure of my Respiratory muscles with the considerable diaphragmatic function decrease. Unfortunately a flare such as this can be very dangerous to the patient and indicates further progression of disease. This finding is actually very helpful for my team of physicians as it reveals my current treatment plan is not adequately managing my disease.

My doctors have expressed to me the new plan of action, and while much of the plan is subject to different results and findings, it is a good starting point:
1. We will take a few chest images to decipher exactly how well the diaphragm is working. In the case it is severely inhibited we will consider placing a diaphragmatic pacemaker to aid inflation of my lungs, and a few medications that can assist in respiratory function.
2. I am to use my supplimental oxgygen to increase my O2 sats upon sleeping, and upon any physical activity. We will be retesting the O2 saturations during a 6 minute walk test at my next PFT to decide whether or not the O2 should be used at all times.
3. We will increase (again) my dosing of the Rituxan; my infusions will now be every six weeks indefinitely. For those of you that are not familiar with the drug Rituxan, it is a biologic agent that works by only killing the bodies mature B-Cells. This drug comes without the harsh side effects of hair loss and sterilization since it is not an Alkylating agent; however, you still feel quite awful for a few days after the infusion. I have been on this drug over a year but it has not proved to be very beneficial. It is the last line of defense before moving forward with Chemotherapy agents. We will increase the dose, hoping the drug becomes more potent.
4. If all else fails and my lung function continues to decrease we will move forward with Cytoxan Infusions.

May will prove to be a busy month in my world, but than again, what month isn't these days? So far I have a few tests/procedures to accomplish: a PFT, MRI, Skin Biopsy, SmartPill Manometry, Lactose Breath Test, and a Rituxan Infusion. I have appointments with my Neurologist, Pain Relief Doc,  Headache Doc, Dermatologist, Pulmonologist, Rheumatologist, Gastroenterologist, and my Primary Care. The chronically ill truly never rest; illness is a full time job.
Since my posts have been a bit depressing as of late I thought I would share some good news for a change! I have had many opportunities open to me in the past few weeks that I am excited to share with my readers. I have a few public speaking gigs this month including, an autoimmune seminar at a local University, an autoimmune patient video project, and my support group finally starts late this month! As many of you know I was asked by the Washington State Chapter of The Scleroderma Foundation to lead a local group in my area; I am extremely excited to begin this new leadership role!
I am also happy to announce that after a few hiccups with the state due to some incorrect information, I was finally approved for Social Security Disability. It has been a huge burden lifted for my small family to finally have income once again. I have saved the best for last... Are you ready?!
Late last week I received an email invitation to be a contracted guest blogger for none other than The Huffington Post! They have asked me to write for their Healthy Living column to which I happily accepted. While this is not a paid position, I am honestly just excited to write for such a well known company. This will be an incredible awareness opportunity!