Effects of Treatment plus Sjogren's on Nervous System

I wonder if UNC will give me a medical degree for all the time and research I have to do, learning how to live with the crappy cards I drew in the Game of Life.   Speaking of the Game of Life I am seriously gone to add some cards, Like ur Fucked Stage III blank cancer, Chemo go back to start, Debt you will forever be u owe $500,000 for Chemo, lol.   Hey apparently UNC (undergrad) has been handing out degrees with there no show classes for over decade what is one more degree for someone that spends more time their than at work/home….Sorry I had to do it and yes I hear u calling my school Moo U.   I am grateful for all the people who work at UNC Hospital especially those in the Cancer Hospital because I wouldn't be here if it wasn't for them.

I never realized the complexity of the Peripheral Nervous System apparently it is broken down in to “four cardinal patterns of peripheral neuropathy are polyneuropathy, mononeuropathy, mononeuritis multiplex and autonomic neuropathy”  http://en.wikipedia.org/wiki/Peripheral_neuropathy.  Accroding to the site the following are symptoms (see below) of autonomic neuropathy and since my endoscope and barium scan showed no malfunction other than a sliding hernia moves us to looking at more drugs.

Gastrointestinal tract: dysphagia, abdominal pain, nausea, vomiting, malabsorption, fecal incontinence, gastroparesis, diarrhoea, constipation

From what I can tell drugs usually used to treat depression and apparently POT, might need to move to Cali…..oh wait I am poor can’t afford to live their….and isn’t the big one coming any day…lol
”A range of drugs that act on the central nervous system such as drugs originally intended as antidepressants and antiepileptic drugs have been found to be useful in managing neuropathic pain. Commonly used treatments include using a tricyclic antidepressant (such as amitriptyline) and antiepileptic therapies such as gabapentin or sodium valproate. These have the advantage that besides being effective in many cases they are relatively low cost.

A great deal of research has been done between 2005 and 2010 which indicates that synthetic cannabinoids and inhaled cannabis are effective treatments for a range of neuropathic disorders”

Not sure how I feel about more drugs, I do want to try Ritalin to help with the fatigue and concentration aka Chemo/Fog Brain whatever u want call.  The big question is can I take it plus the ones to control the nerves in my digestive system that is the answer I hope to get on Monday at 3pm.   I will continue to research this weekend.

For those of you who don’t know when my ONC put me back on Abraxane the 2^nd time after being NED for 9 months and 3 scans the Pharmacist decided to increase the dosage since I essentially had no side effects from the Chemo, minus the continuous Sinus Infection that keep my on antibiotics the entire time.  It got to the point my ONC wrote me 2 years’ worth of refills for antibiotics so I can take it when needed instead of having to drive back to the hill.   I made half way thru before I started getting tingling and burning sensation which signaled the Pharmacist to dial it back a little.  I didn’t have or lose in dexterity issues, for those that don’t know before your next treatment the Pharmacist (at least mine) would come before me ONC and ask some questions and perform dexterity test like button things up or picking a needle (sewing) up, etc.  

Basically it boils down to damage caused by the drugs pumped in me to extend my life plus my immune system continual attacking health cells has landed me where I am at today.  As I have said before the doctors have no clue of the long term effects of aggressive treatment on young woman since there isn’t that much data because as they stated “You are to young to have breast cancer”.  The reality is there are far more young woman, mother’s, sister’s, daughter’s, cousins and friends that have Stage IV Breast Cancer.  Slowly as each month passes I meet more and more scattered across the world, because we are so far spread out many of us connect via the internet to share our stories, success and to support one another thru this long taxing battle.   I wish my schedule would have allowed me to attend the YCS conference that was in a city I have on my list to visit, hopefully it want conflict with my track schedule next year.  I am still look at the possibility of going to a Stage IV Conference in Philly in the month of April.  Sadly many woman are brushed off when the go to the doctor thus by the time the doctors figure it out, they are already at Stage IV.

Attack on the Peripheral Nervous System.

Swollen gland, constantly applying chap stick, finally had to give in to the eye drops which means more $$$$$$$$$$$$$$$$$$$$$ since the eye doctors said I need to use 4+ times a day, and we know my body has to have the expensive stuff preservative free, mouth acting up even brushing teeth equals burning sensation since the mouth is flared up.  Basically it is like when u have a cut and u pour hydrogen peroxide on it and it stings/burns yeah that is what my mouth is like X10 with anything including water.  

And now the scalp and head are joining in on the party, before it was maybe once every 3 months and would just happen once, yeah now every other day.  The easiest way to describe the irritation/pain it feels like when u sleep on your arm wrong and when it starts to wake up it tingles.  Um yeah that is what is going on with the entire head all the way to the neck; it actually hurts to brush the hair, even barely touching my face causes irritation.   I looked this up in the Sjogren’s Syndrome survival guide, yes I was surprised to that there is an actual book and apparently the latest issue confirms that my body is now attacking the Peripheral Nervous System since all my symptoms are listed in each paragraph.  My doctor had mentioned that possibility in one of my previous appointment but then it wasn’t flaring up as much as the glands, and joints.  From what I read the peripheral nerves also controls the gland production which was the first thing I lost costing me over $20,000 in dental and still climbing. 

I have lost a  significant  amount of sensation in my feet and hands, I cut my foot the other day and didn’t know it till I looked down at work, didn’t feel a thing.  Right now my left pinky has totally loss feeling my body no longer regulates temperature correctly and sweating? What is this u speak of, yeah I lost that ability during Chemo.  That is why u see Carrie bundling up in sweats and a blanket me in a tee and shorts and the temperature is like 50, feels fine to my not so much to Carrie.   So far my motor skills aren’t involved and I hope to keep it that way.   This is also what is more than likely causing my digestive system issues I have an appointment on Monday to determine what medicines I will need to add to help to regulate the digestive system but also help with the fatigue and lack of concentration. 

From what I can tell from researching there is really nothing that can be done to help alleviate the attacks on my Peripheral Nervous System.  I will be sending an update on the latest flares to my Rheumatologist to see if there is anything to try since I don’t see him until April.  

On the bright side and confirmed by several coworkers the addition of Vitamin D and Fish Oil and back to sleep less than five hours I apparently look more rested.  Problem is less than 5 hours of sleep is what got me into the vicious cycle of several weeks no sleep, than several weeks of sleeping all day, really can we get some middle ground? 

Thanks to tax refund I am caught up on all my medical bill payments for now, since I just had some expensive procedures and $300 copay that I told them to bill me, especially since I just gave them $300.  I was also able to final replace my broken laptop, affectingly known as Chemobuddy that I take with me to the hospital on my multiple monthly visits, I pod is good an all but hard to surf internet on that.   And this one can actually play Sims 3 on it and is faster than my old desktop, know I am set with having to wait FOREVER for the doctor on clinic days.  That is what the most frustrating part of this whole situation is the mounting cost just to see tomorrow sunrise.

Cancer and Family Dynamics

Everyone has been affected one way or another to cancer, a parent, a sibling, a cousin, an uncle or aunt, grandparent or a close friend or they themselves are diagnosed.   Everyone person reacts different to the news and goes thru a variety of emotions.  The biggest problem is accepting and understanding not only the diagnosis but listening to the patient themselves and their wishes especially those with Stage IV. 

Stage IV is not curable but it can be manage and there are many who live decades with cancer, but they will NEVER BE CURED.  Yes you as the child, partner, or parent want your loved one to be there to see another graduation, birth of a great-grand child, rock with u on the porch but you must RESPECT the choices of the patient.  Sometimes he/she will not make a stink and allow others to make choices that they really don’t want because they don’t want to upset loved ones.  I have been on both sides of the fence as the Caregiver and the Patient, and I have also had other loved ones cousins, aunts and uncles who have faced the dreaded Terminal Cancer or Disease.  I have seen just about everything the love, the pain the suffering, I have watched family members in SEVERE denial of the reality which often affects them emotionally even years after the loved one has passed.  

It is important to be open about feelings, wants and needs of both the patient and family members.  You may not be ready to let your loved one go but you must step back take a long look and do what is best for your loved one.  Fighting cancer is far from a cake walk, in order to fight it you are basically flooding your body with poison not only killing cancers cells but healthy cells as well.   No one really knows the long term effects of this process, each year that passes more information is collected as patients are now living longer with Terminal Cancer but every patient is different so no to cases are alike.   In my case the cancer is controlled at the moment but at a HIGH price, I take about 16-18 pills for pain, inflammation, salvia, just to name a few.  I have to plan my day/week based on how my body feels, good and bad days. 

The battle to live often drains a person and they will not be able to do the same things they did before cancer even though the REALLY want to.  It is important to listen to one’s body and don’t push yourself (yeah I really need to work on that one myself) your body isn’t what it used to be.  This is an area family has a hard time comprehending that adjustments will have to be made, and others will have to pick up the slack.  This is where knowing your family member and observing coming, sometimes that is hard if you don’t live with the person, even then some don’t understand.   I am lucky probably because as a family we went thru this before with our mom, but my sister understands the toll the body takes mainly because I will write it about.  I decided not to follow the same path my mom did and bottle everything up but there are those that don’t understand the limitations battling cancer puts on one’s entire life including my sisters.

Pain & Money

Oh my god someone needs to shot me, why did I get out of bed, oh because my body was hurting.  Only got 4 hours of sleep but strangely my body doesn’t feel exhausted but damn if it doesn’t hurt like bloody hell…..Yeah it’s even worse now sitting down, forget about walking because yeah that isn’t fun either.  Already took my pills had to add back fish oil and Vitamin D, had to stop taking it a while back because my system couldn’t take all the pills.  But my ONC wants to try it again in an attempt to get the inflammation and fatigue under control, even though Salmon, Tuna, & Tulipa are part of main diet, (which gets expensive especially the Salmon, the smoked kind sold in the pack) and the fact I am chugging milk.  I think I might be starting to get some lactose intolerant because damn if I don’t get gassy as hell shortly after drinking some milk, but here is the kicker my body is craving my digestive system isn’t to keen on it.  Let’s be honest my digestive system is too keen on anything at the moment, it is tight, feels like the organs are been squeezed, and that I was on the wrong end of a fight and repeatedly kicked in the side.

Oh finally comfortable, sitting in my lazyboy at my desktop, just added three pillows to the back giving a little relief, I need to find one more pillow might have to crawl upstairs and raid my sisters room.  As soon as the drugs kick in, I will roll the back out with softball and then google to find a massage therapist since I have a prescription.  My onc didn’t know the medical code for Sjogren’s so she put breast cancer, “Um yeah not sure if this will fly with ur insurance” hey doc um ur slacking u should know by now the code for Sjogren’s since u guys are blaming it for everything, lol. 

As if I didn’t have enough doctor’s more and more are adding I am finally reading the book I purchased a while ago called The Sjogren’s Syndrome Survival guide. It is providing some relief that I am not going fucking crazy and now know what is causing the different issues I am having.  Everything is always pretexted not everyone will get these, that has YET TO APPLY TO ME, close to everything is happening.  I need to make an appointment with my ENT to get this gland checked out that is constantly swollen, a dentist appointment as well, which I am dreading because root canal or teeth pulling always happen. Thanks to Sjogren the gift that keeps giving. 

Break….more medical pharmacy run…food…7 loads of laundry…return…..food. Thank god of tax returns stock piling some items to get me thru the semester.  I really didn’t realize how much medicine was costing till I did the taxes, I now have a notebook to keep daily track of medical expenses, especially with the upcoming appointments.  Decided screw copays the doctors and hospitals can just add it to the damn $300 payment plan, I spent just as much in copays as I did payments.  My pharmacy pill has tripled now, not including the over the counter drugs vitamin D, Fish oil, saline spray, eye drops (preservative fee and more expensive), chap stick, Sensodyne Toothpaste (expensive, 2 bottles a month), Act II (alchol free), biotene spray, dentek easy brush, gum soft picks, sensitive baby wipes, to name a few…..If I actually purchased and took everything the doctor’s wanted me too I would literally have to take a loan out.  Seriously going to have to figure out how in the hell I am going to afford everything, each month that passes the medical pills get larger, this is not just an issue I face but every other Cancer patient or chronic disease.  In my case I have both Stage IV Cancer and a chronic autoimmune disorder both are incurable and only treatable, which means $$$$$$$$$$$$$$$$$$$$$$$$$$$$$.  I will definitely need to buy a lotto card tomorrow. 

Three pillows behind my back, lazy boy pulled up to desk, both tickle blankets in reach, pain in check, but new issues rearing up, don’t think my digestive system can handle the steak….time will tell.  Yes I have my lazy boy pulled up to my desk, it is a temp solution till I find a new lazy boy and a desk chair that is affordable and comfortable, for now I think I got it figured out, the body is currently happy as long as I don’t have to back up the stairs today.

More questions than answers

More questions than answers are where I am at, and really I was talking to the financial person at UNC because my account was flagged, basically they needed my permission to roll the last $1000 bill into my payment plan.   And that is when I learned the more I owe the less my payment is, the less I owe the more I pay….WHAT THE FUCK, and the girl agreed she gave me the don’t even ask even I think it’s stupid look.  So on the bright side I owe more but my payment is down $25 bucks, meaning after this latest procedure it should go down another $25 as my IOU goes up to 7 or 8 grand. 

Paxil,/Proxac, Hyoscyamine? (can’t recall the exact names) combo or Ritalin that is the question, that another doctor gets to answer, waiting for that appointment which will more than likely be after they stick a camera down my throat.   Apparently studies have shown that Paxil and Proxac that are normally used to treat depression also work in patients without depression to treat digestive disorders like IBS.  The GI doctors believe that the nerves aka information highway from the brain to the digestive system is on the fritz. In other words the Sjogren’s is attacking everything and disrupting normal operations for Hydro 2.0.

http://health.cvs.com/GetContent.aspx?token=f75979d3-9c7c-4b16-af56-3e122a3f19e3&chunkiid=19650

http://www.webmd.com/ibs/news/20040510/paxil-may-help-irritable-bowel-syndrome

I also get to add a sliding type hiatal hernia and I have arthritis in my ribs with a Costochondritis (arthritis in my ribs).  Basically inflammation is running havoc on my system and the doctor’s still have not found the right combo of drugs, only one of my medicine’s is Celebrex is attempting to corral it, not going so good. http://www.arthritis-unplugged.com/Costosternal-Syndrome.html

The only thing left is getting officially dx with .Fibromyalgia since I am having Recurring costochondritis which according to the above site “could be a symptom of fibromyalgia.”  That and the fact I basically sleep all weekend (24 hours), no attention span, and sleep with no relief (I am still tired when I get up), that is where the Ritalin comes in but I the GI doctor’s want me on, another combo, so a third doctor gets to figure out which one will help me the most or if I take all of them.  

So it looks like another weekend of sleep, maybe I will wake up in time to go to the flea market on Saturday, cause I know I want be going to bed to like 2am to 4am. Ugh