It's been a long time......

I got VERY sick during my journey. I ended up being locked out of my blogger until tonight/this morning because I could not remember my password for the life of me.  I finally got the information correct to set up a new password and I AM BACK!!!!! Time to catch you all up on my life for the past several years.... Must get some sleep now, insomnia has kicked my butt. I will write more soon, now that everything is set back up.

The wonders of Cymbalta

One of the drugs I have been put on for my many diagnosis is Cymbalta.  It is to help with my body aches but also helps with depression.  I have found with my medicines that I don't realize how much they are helping until I don't take them.  I recently had the opportunity to go without my Cymbalta for a couple of weeks. It was time to refill the prescription, but had no money to refill it.  It is my most expensive medicine costing $70 after insurance. I quickly learned that $70 is a small price to pay for the relief it gives me.  My body quickly started feeling stiff and sore.  My joints ached like I had just started working out and my body stiffened to the point I could barely move.  I never realized the medicine was doing that much for me.  I had went to the doctor for a checkup and was telling him about my symptoms.  He told me not to go without my Cymbalta.  It really is an important part of my daily medicines.

Feeling better and making progress

I have been so sick for so long, I feel amazing right now.  I have had numerous setbacks since my successful surgery on October 31.  I know I have gotten behind on keeping my blog updated, so I will try to give a brief recap of the past 5 months.

I had my surgery on October 31 to remove my right adrenal gland and egg size tumor.  It was a successful surgery and luckily the tumor was not cancerous.  I had my surgery on a Wednesday and was released to go home on Sunday.  I was sore from the surgery, but felt pretty good other than the expected pains.  On the way home from St. Louis I started getting sick. I was vomiting and felt tremendous pain.  I ended up in the emergency room the following evening in Springfield.  I was having adrenal insufficiency.  The next several weeks was a whirlwind of ER visits and hospitalizations.  I was very sick.  Ended up being transported back to St. Louis a couple of times. 

I now have a list of illnesses that I suffer from :  Cushing's Syndrome, Diabetes, High blood pressure, Chronic pancreatitis, gastroparesis, 2 or 3 herniated discs in my back, arthritis, and chronic pain throughout my body.  Luckily, I was recently able to get a doctor to listen to me and they put me on Fentanyl patches for chronic pain and I have a prescription of morephine for breakthrough pain.  This has made it possible for me to actually have some time without pain.  That is amazing to me.

I have applied for Social Security Disability and was denied.  I will be getting a lawyer to appeal this, of course.  I want to go back to work, but I am limited on what I can do because of my pain.  I also still have my seizure like episodes and that would not be safe for me to be working while suffering through one of them.  The doctor also told me that I cannot drive as long as I am on my pain medicine, so I will be trying to find something through the Missouri Career Center or Vocational Rehab to see if they can help me.  I want to feel like I am an active, vital member of society.  

I am being referred to the Chronic pain care center in Springfield to see what we can do to maintain the pain under control.  I guess only time will tell what will happen.  I will continue to blog and learn more about my illnesses.  I have learned that anxiety disorders and panic attacks are part of my Cushing's Syndrome.  That was comforting to figure out so I don't feel like I'm totally losing my mind.

It's been a while since I've written anything so I need to get you up to date.  I had my surgery and they removed my right adrenal gland and tumor on October 31.  It was a successful surgery.  I was in the hospital for 5 days and then got to come home.  I started having complications immediately.  First I was treated for dehydration and then put in the hospital for low steriod levels.  I have been in the hospital all but 14 days since the surgery.  I have had Addison's, gastroperisis, and pancreatitis.  I have been a point away from critical condition with too low of potassium level.   I have lost the months I was in the hospital.  I remember bits and pieces of the time here and there, but for the most part I can't remember the time.  I know my family has been beside me through it all.  I have fought the fight and keep fighting.  I will not give up.  I am home again from a six day hospital stay. Hoping to be able to stay home for longer this time.  Will write more later. I get tired easily and need a nap now.

I am gearing up for surgery next week.  I helped clean my storage shed out on Saturday.  It wiped me out but I did it.  I still have a few storage tubs to go through. I am hoping to get through them this week.  I am trying really hard to do more things.  I have actually made dinner, with help, several times in the past couple of weeks.  That certainly helps to make me feel better about myself.  It's not hard to get discouraged and just feel like a worthless lump when all you do is lie around all day.  Unfortunately, I don't have the energy to do much.  It's hard to have my adrenaline level soo high all the time. 

I have learned to slow down and be thankful for a lot more in my life.  But I am also looking forward to getting better and getting back to my life.  It was good to realize during my pre-op visit that I have lost weight and kept most of it off.  I weighed 244 lbs. on January 10, 2011.  I started this journey of illness on February 28, 2011.  I know this date to be exact because it was the day I had my first miscarriage.  That was and will remain a very dark day in my life.  I started gaining 5 - 10 lbs a month.  I was eating healthy, had cut out most sugar from my diet, and was exercising.  The so called doctors I was seeing could not explain why I was gaining weight or starting to have the other medical issues.  They would say my lab work looked bad or suspicous, but let's wait and see.  That turned into me weighing 345 lbs at the highest I have recorded, but I got to the point where my scales wouldn't weigh me because they said I exceded their limit.  So, I know I was 350+.  When I went for my pre-op visit I now weigh 320.5 lbs.  It's still way too much, but at least I'm down from the 350 lbs. and will hopefully just keep going down more and more.  I look forward to having the energy to exercise or even just do normal household chores will help.

I am going to set short term goals.  My first is this, three months from now I want to have had my surgery.  I want to have lost 20 lbs. and be under 300 lbs.  I want to be doing household chores and hopefully not need a wheelchair anymore.

Yesterday was a very long day.  12 hours round trip to St. Louis and then back to Springfield.  Pre Op appointment took about 2 hours.  I was exhausted after we got home.  But luckily for me, since I was just released from the hospital on October 4, they didn't have to do any labs.  My surgery is hopefully set for October 31.  I am still apprehensive, but optimistic because of all the other cancellations.  I was told by a nurse that Dr. Brunt, my surgeon, is the best on the planet.  She says she works on the floor where he does surgery and that he does this kind of surgery on a routine basis.  I will be in the hospital approximately 2 - 3 days.  It will depend on how my labs go.  With me having so much trouble getting my blood sugar under control it might take a little longer in the hospital.  I am ok with that as long as this surgery goes and I can start recovering.

I was very determined today to go through the stuff in my storage shed.  With help, I was able to get through most of it before I went into total collapse.  Now, after I rested a little, I am feeling a little better.  I have been trying to do more, it is usually just so hard because of my body and the constant aches.  The adrenaline rushes really do me in.  I am so tired from my body feeling like it is running a race ALL the time.  I don't know if I'm ready for the adrenaline to be gone or not though.  I hear it is a major withdrawal and you feel like crap.  So, I'm sure there is a down side to getting through the tunnel and to the healthy side of life again.  I think I am ready for this challenge.  I am going to face it head on and hope for the best.

I am looking forward to Thanksgiving.  I am hoping to feel better by then.  One of my daughters has a birthday the day after and will turn 10 years old.  My kids are growing up so fast.  Can't believe the oldest one graduates from high school in 7 months.  She is my rock and my support.  She helps me out so much.  I hear parents complain about their teenagers and how horrible they are.  I have one of the best teenagers on the planet.  Yeah, we have our moments and get into it from time to time.  But I would not be able to make it through my days without my daughter.  She is one of my best friends and I love her so much.  I am very proud of the young, beautiful woman she has become.

I'm off to St. Louis again today.  This will be a long day. It will be round trip.  My mom, husband, and myself will leave around 8:30 am and get back around 7:00 pm tonight.  It is just a "quick" trip for my pre-op and anesthesia visit.  They will do all the paperwork for my surgery.  They will also do blood work and probably another EKG.  I've done one of these visits before for the cancelled surgery.  I'm getting nervous and anxious because I am hopefully a week and a half away from surgery.  I am just scared something else is going to come up and they are going to cancel it again.  I want this surgery to go. I need this surgery to be done with.  I cannot figure out what else is wrong with me and start the healing process without this surgery completed.  I guess I just have to pray and hope it goes this time.

I have been thinking about what Cushing's has taught me or rather forced me to learn out of necessity.  I have learned to be more patient.  I can't rush through things anymore.  I depend on a wheelchair for mobility most of the time now.  I depend on other people helping me a lot now because I can't physically do a lot of things I used to do.  My goal is to get my independence back once this surgery is over and I start recovering.  I certainly don't judge people like I used to.  I'll admit I was one of those people who would look at someone and say.... they don't look sick or they are just fat and need to lose weight.  What is wrong with them?  I had learned this lesson a little by watching my dad and my first husband go through their illnesses.  It really hits home with me now.  I have a lot of things wrong with me, but to look at me you wouldn't really be able to see them.  I look like I'm just a lazy, fat woman who needs to lose weight.  You can't see the fact that my heart rate is about 110 - 120 beats per minute just sitting still.  Every time I stand up and just walk 5 or 6 steps my heart rate increases by about 20 or 30 beats per minute and if I were wearing a heart monitor it would send alarms off. My body aches all the time and makes it difficult for me to move.  My muscles are stiff and the longer I sit, the stiffer they get.  That also makes it difficult for me to move.  There are many more symptoms I have, but that gives the general idea of how I understand and have opened my eyes more to not be so judgemental of people.  I now really understand that everyone has their own story and unless you know their story you shouldn't judge them.  I do understand that there are people who are just mean and hateful, but I also understand that life and the way they have been treated may be part of the reason they are that way.

I guess my point to all of that is to not judge people too quickly.  We should all try to be more understanding and tolerant of each other.  Maybe if we helped people out and showed a little more kindness to each other the world wouldn't be such a stressful place.  It really touches me to see stories about family, friends, and strangers helping people out in their darkest hours.  I recently saw a story about a couple who ended up finding out they both have cancer.  The couple have two young boys and their income has been affected because they are both going through cancer treatment.  People are coming out of the woodwork to help them.  That makes me happy to see stories like this.  This is what the world needs more of.

Ok... embarrassing confession time... For some reason, because of the Cushing's and the things it does to my brain... I am scared of stuffed Winnie the Pooh's.  My husband has two stuffed Winnie the Pooh's.  Nothing special about them, just stuff toys.  They don't sing or dance, just stuffed animals.  I was having one of my attacks about a week ago and he was helping me lay down.  For some reason the dang Winnie the Pooh's were on his side of the bed.  They scared the crap out of me and made the attack worse.  I haven't been able to look at them since.  Just the thought of them in the closet or somewhere scares me.  I start shaking and having another attack when I see them.  It is embarrassing to think about, but important for me to post here because it shows just how crazy Cushing's Syndrome is.  It does bizarre things to your brain and there really is no explanation for why it is happening.  It is very frustrating.  Well, I guess I better go for now... Off to St. Louis.

I just want to say that coupons are a wonderful thing.  I have saved a lot of money by looking up coupons for my medications.  Last month I saved around $150 on prescriptions by looking up the drug company and finding discounts.  They changed my medication and put me on two new insulins when I was released from the hospital at Barnes. So, we came home and the prescription were going to be $120 to get insulins and syringes.  We had the pharmacy call the doctors, got prescriptions changed to the flex pens so we didn't need syringes. Plus I had found coupons for flex pens so we saved $95 on insulins this month.  I also have two coupons for next month already so the insulins will be for free.  I got a call from Liberty Medical a couple of days ago.  I had filled out a survey online and said I had diabetes.  They are sending me a new smart meter, and three months worth of test strips, alcohol wipes, the pen needles I need for my insulin pens.  All paid for by my insurance, they already have it approved.  And they are sending me a cookbook for diabetics.

I look for every chance I can get to save money.  Being sick is very expensive and we didn't have a lot of money to begin with.  With me not being able to work it makes things even tighter.  Trips to St. Louis with the four hour drive each way, gas for that, and motel stays when I have extended stays in the hospital add up in the money department fast.  I am very grateful when I find ways to save money and feel like I am contributing positively instead of taking away from our finances.

I'm very concerned because I can feel the tumor in my right side.  The doctors said I shouldn't be able to feel it.  I looked up the symptoms of adrenal gland cancer and that is one of the symptoms.  I think of worst case scenario and then hope for the best.  I loaded some new pics of myself over the last few years. There has been a big transformation.

When I was released from the hospital the doctors told me that I would be having my surgery on November 7 as planned.  The only way that date would change is if they found something on my abdominal MRI and moved the date of my surgery up.  So, I got a call from my surgeon yesterday. They have moved my surgery up to October 31 and will move it up sooner if they get an opening.  I am scared by this.  They already "highly suspected" the adrenal tumor was cancer.  So, what did they find on the MRI?  All I know for sure is that my surgery will be one week sooner than it was.  This is good and bad.  Good that we get it out of there, bad because that means it is probably cancer and I will have yet another battle to fight.  I can do it though.  I am a persistant woman.  I do not give up.  I may be kicked down from time to time, but I will dust myself off, get back up and fight.

Normal tasks make me tired. Washing dishes, taking a shower, walking anywhere all wear me out and make my heart rate go crazy.  I look forward to my heart not beating so fast ALL of the time.  I figured this out, the doctors want me to exercise to lose weight.  My body never sees anything I do as exercise because my heart rate is accelerated ALL of the time. So what am I supposed to do, without giving myself a stroke or heart attack?? They just need to think about things like that. IDIOTS!!!

It's been a while since I was able to add something on here.  I have had an interesting week.  I went to Barnes-Jewish Hospital ER in St. Louis, MO on Friday, September 28.  I was having one of my attacks and since that is where I will have my surgery I wanted these doctors to see attacks and tell me what was happening.  They immediately took me for a brain CT scan.  It was ok, but they admitted me to hospital for additional testing and to see if I had myastenia gravis.  I had numerous blood tests, some came back right away and others were sent off and won't have results for a couple of weeks.  I also had MRI of brain and adrenal gland.  The doctors are "highly suspicious" that the adrenal tumor is cancer.  Do not have results back from that MRI yet.  I also had a nerve conduction study.  For those of you who have never experienced this... A nerve conduction study is when they put electrodes on you that have needles attached to them and then they proceed to put electric shock through them which forces the needles into your muscles.  Not a pleasant experience.  This was done on my left shoulder, hand, leg, foot, and around my left eye.  The left eye took them over an hour to get good results because they said I kept moving.  I wasn't trying to. You stick needles and electric shock through my face, I guess I involuntarily moved.  The tests turned out good through because it did not show signs of myastenia gravis.

Then they set up the MRI for my brain and abdomen.  Doctors ordered me NPO after midnight. OK, not eating till after tests.  Hospital had flooding issues on MRI floor and I ended up not being able to go down for test until 6:00 pm.  Then, they realized they can't do both tests at same time because they are with contrast and they can only watch one area at a time.  They do brain MRI first and reschedule abdomen for next day with the stipulation it has to be 24 hours later to allow contrast to get out of my system.  I get one meal and have to go NPO again.  I had a dried out biscuit with one piece of turkey, watery chicken noodle soup, and a small chef salad... only thing they had on hospital floor at 9:00 pm at night when I got back to room.  So, I ate my food and then waited to test the next day.  By 8:30 pm next night I told my nurse I was pretty sure they had cancelled my test, rescheduled it and just not told us.  I ended up talking to head nurse who in turn called my doctor after numerous calls had been made to MRI department.  At midnight, well over 50 hours later and only 1 meal I was informed the doctor had just found the MRI department had cancelled my MRI at 9:00 pm and did not call my nurse to let her know.  I was finally allowed to eat.  My mom went to the cafeteria and got me fries, onion rings, chicken sandwich, and egg roll.  I ate so fast it threw me into an attack, but at least I was able to eat first.  The next morning one of my doctors was in the room when the nutrition department brought me breakfast.  I told them I still had MRI to do, doctor said that they had figured out I really didn't need to be NPO for test so it was ok for me to eat.  REALLY!!!! I went 50 hours with only one meal to find out I didn't really need to go without eating?? I am diabetic. This is ridiculous, but at least I was able to eat.

I was released from the hospital on Thursday, October 4. My mom drove me home from St. Louis because my husband had returned to Springfield to work.  It was fun to surprise my family. They had no idea.  So, for now I deal with my diabetes, high blood pressure, and Cushing's. Figured out my "attacks" are from Cushing's but they mimic the symptoms of myastenia gravis.  That is why my doctor thought I had it.  I also wait to see if I have cancer.  My adrenal gland surgery has been rescheduled for November 7.  I just hope it goes this time around.