Wednesday, November 19, 2014

Decisions, decisions.

I am not the same anymore.  My soul is in this body I don't recognize anymore.  Its amazing how a person can change. Do you ever feel you don't even know your own body anymore?  I do...everyday... its like a plague deep within me or constantly having to use an umbrella to stop the raining falling down onto you, day in and day out.  I don't get the feeling of being hungry anymore.  Instead I get extreme nausea or abdominal pain.  Weird isn't it?

My resent visit with my gastroenterologist was interesting to say the least.  I learn something new every time I go.  I asked my doctor about me vomiting when I have a bowel movement if it was related to Gastroparesis or IBS.  He informed me that its got nothing to do with either one.  Apparently, having massive amounts of pressure and pain in my colon would cause me to have extreme nausea resulting me to vomiting.  For example, having appendicitis and a side effect would be nausea making you have urge to vomit.  The bowel movements with vomiting is becoming more of a weekly occurrence for me.  Out of all my symptoms this is the worst and the most scariest.  I always have to stress dose with hydrocortisone as a precaution.  Having my body go through that kind of stress is scary considering my adrenal insufficiency.     

Over a month ago I had botox and balloon procedure.  My doctor indicated that I could continue having the botox and balloon procedure for the rest of my life or have surgery to possibly fix my pyloric problem permanently.  Something to definitely ponder considering every time I have the botox and balloon procedure it costs $2000.00.  So far I have had 3 done already.  I made a point to bring up the subject again concerning Pyloroplasty surgery.  Needless to say he was eager to inform me some pro's and con's and also referred me to a surgeon.  Plyoroplasty is a surgery to help the stomach empty foods more easily.  My pyloric has spasms which causes me extreme pain and doesn't help my Gastroparesis by keeping food in my stomach longer due to my pyloric problem.  The surgery consist of cutting into the pyloric sphincter by making the opening bigger or possibly removing the pyloric sphincter and connecting my stomach directly to my small bowel.  He informed me that yes there could be a possibility the Pyloroplasty surgery could result in me developing what is called Dumping Syndrome.  Dumping Syndrome is basically having the food that is consumed, dump straight into my small bowel without having properly broken down by the stomach.  It could cause the pancreas excreting too much insulin at one and results in heart palpitations, sweating, fatigue, shortness of breath, dizziness, low blood pressure, diarrhea, excessive hunger, hypoglycemia and even shock.  Some patients may feel like they have run a marathon after eating.  I have an appointment in December to discuss things further with the surgeon to determine if I even want to consider this route.  I know one thing, I do not want more symptoms on my plate than I already have.  There is just so much a person can handle before it breaks them.  Even with the surgery I would still have to limit my food intake since my stomach doesn't expand.  If I decided on surgery my doctor would perform another gastric emptying test and EGG, (Electrogastrogram - stomach rhythm) at a later date to see if the surgery was successful.  If it wasn't for my stomach rhythm being normal, I would not even be considered for the Pyloroplasty surgery.  My doctor can not stress enough how my condition is so rare.  He indicated he loves going to the board meetings to discuss my case.  Hey, if it helps him come up with ideas to help me, I am all for it.  During our visit my doctor looked at my last gastric emptying test from last year and again confirmed it was pretty bad results but with the possible surgery it just might improve.  I know I have to weigh my pro's and con's, the what if's etc. but if there is a way for me to be somewhat normal I would so jump through hoops to get there.   Normal recovery time after Pyloroplasty surgery, 4 to 6 weeks.  Since my body takes twice as long to fight for flight, my recovery would most certainly be twice as long.  Surgery is one of the many extreme stresses on the body.  I would have to have IV cortisol to keep me alive. 
There are times where I beg for mercy during painful and horrible times but I also treasure life.  I am so very grateful to be alive and to see or hear from my children and the love of my life. As much as I hate parts of my life, I still love it so and want so much for my future.  I haven't shared this, but I am going to be a Grandma soon!  See, this Grandma has to stick around so I can spoil my grandchild.  Our Lord works in mysterious ways. 

Monday, October 6, 2014

And so it continues...

Sometimes I get lost by digging deep into my thoughts and symptoms dealing with my diseases that I feel like I forget my loved ones around me.  I can only hope and pray I have done what I could for my children and that they know I love them so very much.  There's so many people who I see everyday and they have no clue that I am sick.  It's amazing how all my diseases are so completely invisible.  I don't like discussing my diseases because it makes me tear up while telling others my story.  Writing this blog, I can cry behind my words so that my tears may also be invisible.  My diseases is slowly killing me, spiritually, emotionally, mentally and physically.  I am learning I am not strong after all.  
So many nights I wake up in pain. Pain can be located in my abdominal area, either across the upper part almost like a burning sensation or like someone has punched me in the stomach.  Other times its my upper right side where my pyloric spasms or in the middle of my chest when having major acid reflux burning my esophagus and throat.  I try to reposition myself to reduce the pain.  I've even tried to get up to eat a piece of bread with small amount of tea to try to calm my stomach down but it just makes my symptoms worse.   No matter what I do nothing helps.  Inevitably its ends up being a restless night with work hours ahead of me.  Even taking ambien, I might get about 4 to 5 hours of good sleep. 

I know I have said this in the past, but its simply amazing "sarcastically speaking of course" that doctors find something other than what I am complaining about. I have had ear pain for about 4 months now but the pain comes and goes.  I recently saw an ENT doctor and had an CT scan with contrast done to help figure out why my ear hurts.  Well the findings was a tonsil that is 10 x's bigger than my other one.  The only thing is, its not on the same side I am having pain and the doctor doesn't know exactly why my tonsil is so big.  Visually looking at it, you can't see the difference between the two.  He believes the cause of ear pain is arthritis and TMJ.  He informed me that if I don't stop smoking I could develop throat cancer due to my lack of immune system, etc.  I am due to return within 6 months to see if my tonsil has worsen.  Honestly, I had no clue I was even having an issue with my tonsil.  I had no symptoms over than difficulty in swallowing.  Since then and having the scare of cancer thrown at me, I am determined to stop smoking.  As far as the TMJ, I don't think that is it.  I have had TMJ for 17 years and the pain I have in my ear is totally different.  I give up trying to figure me out.  I'm wondering if it has anything to do with me being ANA positive and my antinuclear antibodies are attacking my tonsil.   

Recently, I had another botox and balloon procedure on my pyloric.  My doctor indicated that I was a special kind of Gastroparesis patient.  He believes my main issue that caused me to have Gastroparesis is my pyloric.  He said I could continue having the botox and balloon procedure for the rest of my life or we could always look into having surgery to permanently fix my pyloric.  I reminded him that my youngest son had pyloric stenosis when he was 6 weeks old.  He thinks that's so ironic and fascinating.   My concerns with surgery, 1) I would have to be out of state in a hospital for God only knows how long 2) With having primary and secondary adrenal insufficiency I would be required IV cortisol and pray my body heals normal.  Having primary and secondary adrenal insufficiency I take longer to overcome illnesses and/or surgeries.  On a good note, my esophagitis is completely gone!  Doubling up on my Protonix really helped.  Hiatal hernia is still present.  Guess that sucker is never going to leave me. 

You would think I would know all my diseases by now but I don't.  For example, I was trying to figure out why is it when I have a bowel movement, I vomit as well.  I did find out that with IBS no vomiting normally occurs when having a bowel movement.  So why vomit?  Could be a reaction from constipation, perhaps related to my Gastroparesis. Whatever the case my be, its extremely annoying to have activity coming out of both ends at the same time.  Sorry to be so graphic but unfortunately this is my life now.  Things one would think its absolutely disgusting, becomes normal talk for people like me.  I do know my doctor was not pleased at me for not letting them know sooner I was at times having difficulties having a bowl movement and vomiting.  Needless to say, he expressed his concern and prescribed more Linzess for me to take daily.  Having IBS, is certainly no picnic.   

I am still not sure why I was chosen to carry the burden of all of my diseases.  I know it has brought me closer to our Lord and to be honest, I am ready to go when he is ready to take me. There are so many of us who are sick and diseased.  You never know if its a person who sits beside you on a bench at a park or that man or lady who in the check out line at the local grocery store.  When you look at my face, do you see beauty or do you see hurt, pain and all of my diseases? Please help spread awareness.  You never know who's life you will touch. 

Sunday, September 7, 2014

The latest news.....

We put so much trust in our doctors.  What medications to take, tests, blood work results, what we should eat, what to avoid to eat, if I should have this procedure or not, the list goes on and on.  I know I have questioned them in the past, should I get a second opinion, will this medication counteract with other medications that  I'm currently taking, etc.  Recently I had a little scare.  My Endocrinologist prescribed me potassium medication Klor-Con 20 MEQ twice a day. I trusted my doctor and started taking the medications right away.  About three weeks later, I returned to her office for thyroid blood work and inquired how low my potassium was from my last visit.  Nurses looked, asked questions, indicated that they had no record of ever testing my potassium and wanted to speak to my Endocrinologist and would call me back.  I can't tell you how much that scared me.  I had been taking the potassium pills for over 3 weeks and only had a week left.  I called my doctors office every day for a week.  Finally someone called me back and informed me that my information had gotten lost but was found.  My potassium level was only a 3.0. Normal range for potassium is anywhere between  3.5-5.0.  So I wasn't that bad off to begin with.  Needless to say they tested my potassium levels by using the blood drawn for my thyroid test.  Thankfully, the results were back to normal.  However, my blood results for my thyroid was a different story.  Yet again medications were changed.  Over the past 18 years I have yet to have normal thyroid levels.

For about a month now I have been having some difficulties swallowing food and medication.  I emailed my gastroenterologist because I was curious to know if it had anything to do with my Acute Esphagitis.  He indicated we should do another EGD, offer botox and balloon dilatation of the pylorus again.  They also suggested that I should have a PH study and manometry to evaluate the esophagus further but I decided to wait on that test.  He believes that the botox I received  in May 2014 may be wearing off.  I am scheduled to return on September 11th for another EGD with botox and balloon.  I am curious to know if my esophagitis and hernia has gotten worse.  Pain is slowly returning.  Very thankful the procedure is coming up next week.  I am hoping the pain will disappear again and my acid reflux will calm down. 

For the past couple of months I have developed a new symptom.  I have been having massive sharp pain deep within my ear.  I have seen a regular family doctor about it several times.  There is no infection and refers me to see an ENT.  The ENT Dr. checked my ear, by sight it seems like nothing is wrong with it.  He mentioned possible TMJ but after I told him I have had TMJ for 17yrs now and the pain feels nothing like TMJ.  He then wanted to put a scope up through my nose to look at the back of my throat.  To our surprise he found a cyst on the back of my tongue.  He ordered a CT scan  with contrast in two weeks.  Seems harmless right?  After reading the doctors orders and doing some research, I started to panic.  Doctors notes:  Attention right neck, right tongue base, naspharynx.  I know we can't believe everything we read on the internet but having a cyst on base of tongue and naspharynx mentioned, indicates possible cancer.  I am hoping and praying all results are negative!!  The other day while pondering all my health problems, I realized I need to discuss the findings of the cyst to my rheumatologist.  When I was tested positive for ANA (Anti-nuclear Antibodies - which basically means my body is fighting against itself, seeing the good cells as bad and killing off the good cells) my doctor informed me that if I develop mouth sores and/or rash I needed to inform her immediately.  Well I would consider the cyst as a sore, wouldn't you?  If she agrees, she will diagnose me having lupus.  In my opinion, I would much rather have another disease than to have cancer.  Time to change the subject before I start crying again. 
As a lot of you already know, I have a total of 5 diseases and 5 other health conditions but have you ever thought of how many medications I have to take on a daily basis?  It just might surprise you.  Listed below are the medications I take daily, dosages etc.
Protonix - 40 mg twice a day for acid reflux
Carafate - 10 ml four times a day treatment for stomach ulcer, stomach & esophagus inflammation
Bentyl - 10 mg four times a day for IBS (Irritable Bowel Syndrome)
Zofran - 8mg as needed for nausea
Flexeril - 10 mg twice a day or as needed for leg pain, muscle relaxer
Levothyroxine- 75 mg daily - Thyroid
Ativan - .5mg daily for nausea
Linzess - 290 mg daily relief for constipation
Hyoscyamine - .125mg as needed for pyloric spasms
Hydrocortisone (Cortef) 10 mg in the morning and 5 mg at night.  If I go into an adrenal crisis I have to take more to help my body with stress. I take this to stay alive. 
Aambien - 10 mg at night for insomnia
Syringe and injectable Solu-Cortef - for emergencies only
Within the next two weeks I will have had 2 major procedures.  I can only hope and pray they return as negative results.  Until then please say a prayer for me.  May God continue to bless you and your loved ones. 

Monday, July 21, 2014

Just add it to my list of illnesses

God created something unique in each and every one of us.  We often wonder and asks ourselves, why am I here?  What is my legacy?  I know I have asked myself these very same questions especially dealing with so many illnesses.  We often dwell on our lack of hope to continue fighting because we are faced with it day in and day out.  What we have to remember is that we can never loose our reason for living.  I want you to remember something, something very important, God made you and you are worth everything!

I recently had a visit with a neurologist for a nerve and muscle test.  During our talk, he knew I had many rare diseases with on going symptoms.  He told me that he had a patient that would constantly call the doctors office to complain about her symptoms and demanded procedures to be done.  The doctor was calm with the patient, provided her with her needs and scheduled a procedure.  The doctor paused, looked up at me and said but someone like you who has multiple problems, never complains.  I then explained to the doctor, life is too short to be dwelling over every single issue.  Its how you choose to live your life makes a world of difference, not for anyone else but for yourself.

About a month ago I had a botox and balloon procedure on my pyloric to relax and stretch the area in hopes to reduce my pyloric spasms.  During the procedure my doctor found white spots throughout my esophagus and also discovered a hiatal hernia.  Thankfully, the biopsy results done on the white spots came back negative for infection and/or cancer.  However was diagnosed me with esophagitis which is inflammation that damages tissues of the esophagus.  Esophagitis symptoms are painful swallowing, chest pains and reflux.  Causes include stomach acids backing up into the esophagus.  My doctor informed me to double up on my Protonix and Carafate to help reduce my acid reflux and to help coat my esophagus to prevent further damage.   (See pictures below: First photo is my hiatal hernia and the second photo is the view white spots)

It has almost been 2 months after my pyloric procedure and I am extremely happy to say that every once in a while it will remind me the spasms are still haunting me but overall I am having no more spasms! Not to mention, all of my recent stool samples results came back normal.  When my pyloric spasms return, all I have to do is call or email them and they will schedule another botox and balloon procedure, no need to make an office visit.  How cool is that? 

Since my last post on my blog, I became very sick one night.  I didn't want to wake anyone up so I left out of the bedroom and into the hallway bathroom.  It was 1:00 am, woke up feeling extremely sick to my stomach.  I started vomiting, diarrhea, extreme dizziness, heart palpitations and was so tired because I still had ambien in my system.   I could have easily passed out, hit my head or gone into shock.  You see, that evening we went to a restaurant, had a hamburger and boy it was good.  6 hours later I am vomiting up undigested food.   Sorry for the TMI, but it was coming out of both ends at the same time.  I felt and am pretty sure I looked, pathetic.  My question to both my gastroenterologist and endocrinologist was, how do I know if I am going through an adrenal crisis when some symptoms of gastroparesis and adrenal crisis are the same.  My Gastroenterologist admitted she didn't know and thought I should ask my endocrinologist.  My Endocrinologist didn't seem to be worried.  She indicated that if I ever have diarrhea more than twice within a period of time to stress dose on my hydrocortisone.  I should take a triple or quadruple my steroid intake. She indicated with any episode of vomiting I should give myself or someone else give me, an injection of 100% cortisol and to just ask for a refill later.  Needless to say, I lucked out that night not going into shock.  I did not stress dose or give myself an injection.  You see, I am still learning about all my diseases.  Its really hard not knowing what disease is causing what symptom.  So I guess with that said, every time my IBS, gastroparesis or adrenals cause me vomiting, extensive diarrhea, dizziness, extreme abdominal paid, nausea, etc., I am just going to stress dose.  I would rather be safe than for my loved ones to arrange my funeral.

My recent blood results came in from my Endocrinologist.  She indicated my thyroid levels are almost level, made some adjustments but was more concerned about a new finding.  I am now hypokalemia, low potassium levels.  I am having to take these huge horse pills of Klor-Con 20 MEQ twice a day.  Since I already have a problem swallowing due to my thyroid flares and esophagitis, I have to break the pill in half.  Needless, this proves that no matter what I try to consume, between all my diseases, I am not getting the nutrients my body needs.  I feel as if my body is slowing starving itself and there is nothing I can do to help other than pray.  

Thursday, May 15, 2014

Symptoms and latest news

I decided to post my symptoms for each disease I have so that maybe you can see what I go through on a day to day basis.  Please realize some days are better than others.  Some may be going through the same thing and some may be surprised at how much I have to endure.  As for me, I have to take one day at a time.

Gastroparesis:   Heartburn, nausea, vomiting undigested food, feeling full quickly when eating, abdominal bloating and pain, poor appetite, weight loss. Thankfully, I have not had vomiting for 9 months now and my weight has settled.  I have lost over 60 lbs with this disease.  I am 125 lbs and holding strong.  I can only eat approximately 1 cup of food at each serving.  Since I have no gallbladder I have to control my fat intake.  Muscle loss due to malnutrition.  Constipation due to low fiber diet. 

GERD:   Feeling food is stuck behind the breastbone, heartburn, nausea, bringing food back up (reflux), cough, difficulty swallowing, hiccups, hoarseness, sore throat.

IBS (Irritable Bowel Syndrome): Abdominal pain or cramping, bloating, gas, diarrhea or constipation, pain that radiates from around belly button to back area.  Sometimes the only way I can ease some pain is by using a heating pad.

Hashimoto Thyroiditis: Fatigue, sluggishness, increased sensitivity to hot and cold, constipation, dry skin, hair loss, muscle aches and weakness, always extremely tired no matter how much sleep I get.  Heart palpitations. 

Primary Adrenal Insufficiency:  Muscle weakness and fatigue, weight loss, and decreased appetite, feeling faint at times, salt craving, darkening of skin, nausea, diarrhea, muscle pains, body hair loss. 

Secondary Adrenal Insufficiency: Dizziness, weakness, tiredness, nausea, decreased appetite, muscle and back pain.  Hair loss, brain fog and can't think clearly at times.  Night sweats. 

Empty Sella Syndrome: Headaches.  My pituitary gland has no mass and is flattened.  Therefore causes problems for my adrenal glands, ovaries, and thyroid. 

I have been tested positive for ANA (Antinuclear Antibodies) It basically means that my immune system is attacking my own cells and tissues.  I know that a lot of my symptoms are repetitive but not knowing which disease causes what is extremely hard for me.  For example: my major back pain and abdominal pain could either be caused by my stomach disease or I could be going into an adrenal crises.  I don't know how to determine the cause with similar symptoms for each condition I have.  I have also been dealing with massive amounts of leg pains.  Sometimes to the point where I cry out in pain if someone touches my legs.  I have been referred to a Neurologist. Until then I am continuing to take robaxin which really doesn't help much.      

I had a one and a half hour conversation with two of my doctors regarding my Gastroparesis and abdominal pain.  I knew at one point I was going to have one of my doctors tell me this, but wasn't expecting it to be so soon.  He informed me that I need to highly consider a career change.  He informed me that it is causing too much stress and havoc on my organs.  I knew I was really stretching myself at work and knew I was limited.  I have noticed for quite some time now that when I did physical work it would cause me lots of abdominal pain.  

I had a recent endoscopic with botox and balloon procedure to stretch out my pyloric sphincter.  This was my second time having this procedure done.  My first one helped with 10% pain relief.  Doctor seemed excited that it helped that much.  Well it has been a week from having my second procedure and it has helped tremendously!  How exciting!  Now don't get me wrong, I still have IBS and Gastroparesis but having no spasms from my pylorus is totally awesome!!  I know the botox and balloon procedure is only temporary but I am so hoping having no spasms lasts for a couple of months or more!  Good news right?  Well I also received bad news after my endoscopic procedure.  Yep, never fails, sad to say.  My doctor found white spots throughout my entire esophagus and pylorus and I now have a hiatal hernia.  A biopsy was taken and should know exactly what the white spots are.  My doctor is thinking it is esophageal candidiasis disease possibly due to having to take steroids for my adrenal disease and the lack of immune system.  Until the biopsy results come in I have not received any additional instructions.  Whatever I have, I need to inform my endocrinologist to discuss proper treatment with extra dosages of hydrocortisone (cortisol) for my adrenals to kick in to help fight off the infection.  If its not one thing its another right? 

Saturday, March 29, 2014

My Life with 5 Diseases

I was thinking the other day about how many doctors I have currently, there are 6 doctors all together; family doctor, insomnia doctor, rheumatologist doctor, thyroid and adrenal doctor, gastrologist and pain specialist.  March brought me so many doctors appointments that has really overwhelmed me.  If all goes well, April will slow down.  Being a manager does have its advantages with scheduling my days off around doctors appointments.  However, there's moments when you just wish you could have a day off to relax, tend to your mental needs, without running around from one doctors appointment to the next.  I feel extremely blessed having the ability to still function well and work a full time job. 

When I get many compliments on my beauty, I can't help but to think to myself that I may look okay from the outside but all my diseases are invisible and no one can tell I am sick just by looking at me.  I am always hesitant to tell people that I have 5 diseases.  When I do tell people I get some who stop everything and pray for me right then and there.  Other times I get these looks like they pity me or disgust from them.  What I have is not contagious.  I may be different but I still have feelings.  We were all given life.  Its how you choose the way you live your life is how you can make a difference.  I am a positive person and I don't dwell on my sorrow.  Yes I get extremely tired, yes I have lost friends and it can be very discouraging but what keeps me head strong is knowing I can do all things through Christ who strengthens me. 

Due to my gastroparesis all of my doctors are extremely concerned about me being on pain medications for my abdominal pain.  Pain medications tend to slow your system down more with Gastroparesis.  With that said they have been avoiding any pain medications all together.  Recap, I have had several celiac nerve blocks, latest one worked for almost a week.  My pain specialist knows the general location of where my pain was coming from but indicated at this point that my only other option I should consider is a neurostimulation.  A neurostimulation is a pain therapy that treats nerves with electrical stimulation rather than using drugs.  The device would be surgically placed under my skin and leads along my spinal cord that would provide pain relieve by blocking the pain messages before they reach my brain. I would be able to adjust the strength as needed.  Of course, I would be able to experience a temporary neurostimaltor to see if it would work prior to them doing a more permanent surgery.  However, the concept of having leads near my spinal cord is very scary for me.  It would greatly limit me on my mobility.  For those who know me well,  I am physically active and love getting my hands dirty in projects.  So having physical limitations would be greatly disappointing for me.  However, having hardly no pain really does sound like a true blessing.  One thing I have learned over the past couple of years with diseases,  I miss my old self.  To remember life without pain is one you will always treasure.  I had an hour long discussion with my doctor regarding the pro's and con's regarding the neurostimulator.  With my adrenal insufficiency disease, having a neurostimulator would cause extreme stress on my body.  I would have to stress dose with more medications and closely monitor my body to make sure I don't go into shock.  A healthy individual the recovery time would be approximately 4 month but for me I would have at least 8 months.  There is no way I would be able to do this.  Therefore, I have decided not to pursue the neurostimulator procedure.  I see it this way, feeling pain means your still alive.  The Lord has brought me this far. 

After 3 1/2 years from doctors removing my gallbladder and developing Gastroparesis, I have had this pain on the right side of my abdominal area under my right rib.  My gastrologist wanted to see if my pain was caused by muscle spasms on my pyloric sphincter and suggested a Botox injection could relax it.  I figured it wouldn't hurt to at least try.  I had the procedure but after one day, my pain returned.  I have noticed the pain is not constant now but when the pain hits now its a strong stabbing feeling.  The pain is all of a sudden and it tends to take my breath.  At this point since my options are extremely limited, I am to the point to where I just have to suck it up and live with it because I refuse to give up. 

I was blessed for a month without having a flare up with gastroparesis.  Now its back on full force without vomiting thank goodness.  What's amazing is I have a flat stomach is in the morning but by evening, I look like I am 5 months pregnant.  The extreme nausea is back and I can not tell you how much I greatly appreciate having Ativan and Zofran.  For some patients eating mints or chewing gun seems to help them cope with nausea but for me, I tend to produce too much saliva which makes me even more nauseous.  So not worth it for me, so I rely on medications.  I have been able to keep my weight stable.  I am eating whole foods but still have to keep in mind not to eat more than a cup of food at a time, otherwise I will be in extreme pain because my stomach doesn't expand. 

I was diagnosed 17 years ago with Hashimoto Thyroiditis Disease and it has been a constant roller coaster trying to get my levels correct by using medications.  No doctor has ever been able to stabilize my levels. It wasn't until 6 months ago that my endocrinologist thought about testing my cortisol.  The IV test injection is not a normal tests doctors order but I am extremely thankful she tested mine.  I asked my endocrinologist when she thought I would have another cortisol test to make sure I am on the right dosage.  She informed me that it would be too dangerous to test my cortisol levels because I am not stable in other areas such as my thyroid and stomach disease.  She doesn't understand why my body has such a hard time getting things leveled out but firmly believes its because of my other diseases.  For a couple of months now I have developed a new symptom with my primary and secondary adrenal insufficiency, I wake up in a complete sweat.  My body and sheets are completely wet.  When I spoke to my mother about it, she informed me that my father woke up completely wet at times.  My father passed away many years ago, but it makes me wonder if he ever had undiagnosed conditions. 

My recent visit with my rheumatologist was rather interesting.  I was referred by my family doctor because I tested positive for ANA, Antinuclear Antibodies.  She informed me that it is possible to test positive for ANA with Hashimoto but this is the first time I have ever tested positive after 17 years.  She indicated that if I develop a rash or sores in my mouth to inform her immediately, which would result in me having Lupus.  I have had other symptoms that cause concern, extreme leg cramps and numbness in my finger.  Right now she has me on 500 mg of Robaxin 3 times a day.  Robaxin is a muscle relaxant that works by blocking nerve impulses that are sent to the brain.  It seems to really help me with my leg cramps.  I would hurt so bad I would scream out in pain if someone touched my legs.  My doctor also has me on 50,000 units of vitamin D for the past 4 weeks.  I have another 4 weeks to go to see if the deficiency is gone.  Confirmed the vitamin D deficiency has nothing to do with my leg cramps. 

I started writing my blog in hopes to help others and raise awareness.  Living with 5 diseases is no picnic and certainly would not wish any of it on anyone.  I may never understand why I have these diseases but I know one thing, the Lord does not give us what we can not handle and I am fighting till the end. 

Wednesday, January 1, 2014

My Life with 5 Diseases

Each and everyone of us has had a problem, a disease, a sickness we can not overcome, a situation where we feel like there is no hope.  We seek out for help. We pray. We cry in pain, physically and emotionally. But always know, you are not alone.  Millions suffer from so many things.  We do not ask for pity, we do not ask to be ignored.  We want your presence, your loyalty, your love.  We do not like hear ourselves complain and certainly don't want others to get tired of us.  We have to voice our concerns, our problems, our feelings and emotions.  So many words are often left unspoken and we suffer, physically, mentally and emotionally. 

Recently a friend of mine who has Gastroparesis wrote this on her Facebook page.  I had to share this because not only does it speak volumes but the meaning behind suffering brings us closer to God.   

 1 Peter 4:12-13

Suffering for Being a Christian12 Dear friends, do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you. 13 But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.

I always tell myself that things happen for a reason and that our Lord will not give us what we can not handle.  Sometimes reminding ourselves why we have to suffer is the best medicine.  I was driving home from a doctors appointments out of state and a Christian song came across the radio station.  When you have a moment I want you to listen to the words to this song,  Holy Spirit Have Your Way.  When I heard the lyrics for the first time while tears filled my eyes, I finally was given a glimpse as to why I am going through this all.  I cried out to the heavens and thanked our Lord.  Thank you Jesus for giving me life and allowing me to live longer, Jesus have your way with me.  You see, now that I know that one disease is connected to the other and listening to my doctors comments and concerns and doing my own research,  I knew I had to go through one disease after another to realize and understand that the Lord guiding me in the right direction to my doctors.  There is no alternative without medication to keep me alive and our Lord isn't finished with me yet.

Recently I had another celiac plexus block but this time it was mid spine area.  The procedure is to inject a local anesthetic into or around the celiac plexus of nerves that surrounds the aorta, the main artery in the abdomen. It is performed to block the celiac plexus of nerves that go various organs and parts of the abdomen, hoping to reduce pain in my abdomen. Overall the block lasted about a week.  So it was really nice not to be in so much pain for a short period of time. 

I also recently had an appointment with my gastrologist and I was surprised by his response after discussing the recent findings on my Primary and Secondary Adrenal Insufficiency Disease.  He mentioned that many of his patients who have Gastroparesis also has Adrenal Insufficiency problems.  He indicated that once the patients get on the right dosages of medication such as hydrocortisone or cortef, their symptoms from Gastroparesis progressively gets better.  Now that was awesome to hear!  Can you imagine hardly having Gastroparesis symptoms?  I've gone through so much since 2010 I don't even know what normal feels like anymore but the thought of it sounds absolutely wonderful.  I informed my doctor that I will be rechecked with a cortef injection again in March of 2014.  I should know if I am on the right dosage or if changes need to be made to my medications.  He asked me what made your endocrinologist think you had an adrenal problem.  Well 17 years of having Thyroid Disease and never able to get my TSH levels corrected, she knew something was wrong.  While giving a little giggle only because I seem to baffle every thyroid doctor out there, my TSH levels were 204; the normal range preferred is 0.4 - 4.0. Go figure!  We then discussed my recent celiac plexus block procedure and he was really concerned that I was still having pain on my upper right abdominal area.  Its been an ongoing thing for me.  I have some good days and others I buckle over in pain.   He asked me a couple of questions and came to a conclusion that I may have a problem with my pyloric sphincter.  In March I am scheduled to have an EGD to inject either botox to relax it or use of a balloon to widen my pyloric sphincter.  I have had an EGD before but not for my pyloric sphincter.  My doctor asked if there was anyone else in the family that had pyloric problems.  As a matter of fact, my youngest son had pyloric stenosis when he was only 6 weeks old and had to have emergency surgery to widen his.  Now he is almost 12 and has about a 6 inch scar on my upper right abdominal area.  My doctor also recommended me to be a Gastroparesis clinical research study.  I have to read over all the documents he provided and make a decision.  Of course the research study would not cost me a thing but the time traveling etc might not be feasible. 

I love the fact that I can email or call my doctors anytime and get immediate response.  I was recently diagnosed with pneumonia and had to alert my adrenal/thyroid doctor.  Without hesitation I was given immediate concerns and instructions.  My doctor informed me that pneumonia was the worst illness to have with primary and secondary adrenal insufficiency.  You see, I have to rely on medications to keep my body working.  Normally I take 10 mg of hydrocortisone/cortef in the morning and 5 mg at night but being that I had pneumonia I was instructed to take quadruple my medication equivalent to 40 mg in the morning and 20 at night to help my body fight off the illness otherwise I would have gone into adrenal crisis. 

My son came into my room a couple of weeks ago and saw a photo of me back in 2011 when I went on a cruise with my boyfriend.  He said, "Mom you looked better in that picture than what you do now."  He wasn't trying to be mean, I know this but he is right.  I don't like taking pictures of myself anymore.  I don't even like looking at myself in the mirror.  I see my cheeks caving in, my face thinning out.  Sure makeup covers the ugliness but it doesn't cover the chronic pain and suffering I have endured with 5 diseases.