Grief can came in so many ways. It does not mean you are weak, its about how strong you are dealing with a hard situation. For me my grief is how my body is failing on me. I want to do so much more, see things I haven't seen, enjoy new adventures and enjoy life longer. With all my medical conditions, knowing how I feel every day pushing myself to get up to face the day. Every day is a battle. I remember the old days where I would get just a sinus infection and think to myself this shall soon pass and I'll get better. People take for granted of everything in life. I don't have that luxury anymore. I won't get better. There is no cure..... this is my grief, forever.
There has been a lot that has happened since my last blog in August. Its hard to even come to terms with it all. Lets take a step back a bit. It all started with having thyroid issues 20 years ago after seeing numerous specialist of levels going up and down like a roller coaster it was determined I had Hashimoto. Lets jump forward to 2010, vomiting once a week, never understanding why. Finally determined it was my gallbladder. Had surgery but it made things worse, not better. From there, I developed Gastroparesis, a stomach disease. Then Gastritis, IBS (Irritable Bowel Syndrome) and GERD (Gastroesophageal Reflux Disease) . Nausea, vomiting and a lot of abdominal pain. Developed pylori-spasms, had surgery to widen the sphincter hoping it would help with my delayed stomach emptying but developed Dumping Syndrome due to surgery. My luck really stinks! Soon after, I had an endocrinologist test my thyroid again and decided after all these years something wasn't right. She wanted to do more tests. So a cortisol and MRI was ordered, sure enough I was diagnosed 3 more rare diseases with no cure, Primary Adrenal Insufficiency (Addisons Disease), Secondary Adrenal Insufficiency. The MRI results showed a flat pituitary gland (Empty Sella Syndrome) another words my pituitary gland can not produce the natural hormone that our bodies need to sustain life, About another year later I noticed my toes turning purple, finger tips red while the rest of my fingers looked pale when I was cold. My doctor diagnosed me with Raynauds Disease. A couple of months ago I was diagnosed with chronic cystitis and mild dysplasia on my bladder and was basically told that the cause was unknown. Numerous doctors don't believe the medications I am on would cause any problems with my bladder. Unfortunately with mild dysplasia, there is nothing they can do until it turns into cancer. That's a nice thought huh? I now have a permanent neurostimulator (spinal cord stimulator) implanted in my back to help with my abdominal pain. Overall the stimulator works good but I still have some back pain in the muscle beside surgical area. Was told that I had inflammation in my spine known as spondylosis of thoracolumbar region (Degenerative Artritis). and what my pain specialist would like to do is give me an injection on both sides of the spine to reduce the nerve pain. After 6 months if the injection doesn't work then they can go back in to burn the nerve endings. Kind of a scary thought. Within the month not only did I find out I had spondylosis in my spine but I also was informed I have a heart condition. I wore a heart monitor for 24 hours and a ultrasound on my heart and kidneys. The heart monitor indicated I have a very high heart rate even during resting, Test results showed I have Sinus Tachycardia and a mitral valve leakage in my heart also known as valve regurgitation. I was told that if the leakage becomes worse or have calcium build up on the valve then I will need to have heart surgery. I was placed on 12.5 mg metoprolol a day to slow my heart rate down. While on medication my heart rhythm is within the normal range. I'm glad my doctors are concerned with my health. With a high heart rate they were really concerned about me having a stroke. One thing for sure with all my diseases I feel no desire to keep pushing myself. I'm getting too tired to fight.
What I don't understand is how much more can a person handle before they break. I received my denial papers for disability. Two days before Christmas and I get hit with a denial papers. Their reason for not approving me is that I am not disabled enough. Really? I have a list long of diseases that could kill me really at any given time. My symptoms are nausea, vomiting, dizziness, loss of short term memory, bloating, headaches, muscle aches and pains in joint areas, lack of appetite, fatigue, depression, lack of blood circulation to my hands and feet, blood in urine, constipation, diarrhea, confusion, cant bend over or stretch, can't lift heavy items, upper and lower back pain, blood in stools, lack of energy to even attempt to work, I'm cold all the time, heart palpitations, blood pressure and heart rate sky rockets when I am vomiting and running to the bathroom. I recently found out that I have acute acid reflux. The normal person may have only 4% acid reflux, mine is 19%, The muscle from my esophagus to my stomach is extremely weak therefore food will just come right back up. One of my doctors recently told me that all of my doctors are just trying to keep you comfortable as much as possible. I know there is no cure for what I have and I know my medications are helping me stay alive.
I once heard that the weakest person is a person who thinks they can't be broken. I know I am broken. Broken into millions of pieces and there is no possible way to glue to pieces back together.
Saturday, February 11, 2017
Thursday, August 4, 2016
Here is to my new beginning...
For me I see having diseases is not a curse, but more like trying to figure out what I am to do and to find something positive out of it all. Think about this for a moment. How would you feel if you were faced with a disease for the rest of your life? Now how would you feel if you were facing these diseases with no cure? Seems overwhelming doesn't it? These diseases take such a huge toll on my health and body. It tries to take my spirit but trying to stay positive and keep going can be such a struggle. It wears me out so much and it takes all that I have to keep pushing. Trust me I have bad days, lots of bad days that I feel like I can't go on but I find the courage and inner strength to keep fighting the fight.
Recently I had a Esophageal PH study and Esophageal Manometry. Received some good news and also bad, which never fails. The manometry test results came back normal. I am extremely thankful that I have no problems with my esophagus muscle, Yes they are working properly! However, I did find out that the PH study was not so good. At first when I heard the results I was thinking, oh well that's not so bad...but she then informed me that the normal person has an acid reflux of 4 % a day. Okay cool. Well then she told me my result was 20%, OH! That's a huge difference! I was in shock! Needless to say I am having to aggressively treat my acid reflux otherwise the acid could cause major problems with my esophagus and aggravate my digestive issues even more. As of now, I am on 40 mg protonix twice daily, 175 mg of zantec twice daily, galvascon extra strength four times a day. My doctor is hoping that with this aggressive approach it will help prevent my esophagus becoming permanently damaged. I knew I already had Gastroesophageal Reflux Disease - GERD, but I didn't know I had that much reflux.
For my annoying agonizing pain I've had for over 6 years well, about a month ago had my temporary neurostimulator implanted for 8 days to see if it would help with my upper right abdominal pain. I was able to control the strength needed to numb the area by using an Ipod device. It reduced my pain in that area at least 90% and controlled my nausea very well. I was thankful for that. However, due to the needles and wires coming out of my back with a battery taped to my outer skin, I had massive amount of back pain and wasn't prescribed pain medication.
I could never get comfortable, seemed like every move hurt and certainly didn't want to trade one pain for another. I was told that between the needles and the wires perhaps it was hitting a nerve. I am concerned about the back pain but I was assured the permanent one would definitely be beneficial. The permanent neurostimulator, leads and battery will all be under my skin. I am hoping things will work out for the better. When they removed the temporary neurostimulator within 30 to 45 minutes later I started to experience nausea and upper abdominal pain again. I finally received the date for my permanent neurostimulator! August 12th!! I'm excited and nervous. I just want everything to go smooth. The video is when the doctor was removing the leads out of my back without any medications I must add....
Recap on my trigger finger surgery. My finger isn't the same, I still have finger pain and I still don't have the strength in my left hand. I have to watch how I use my hand cause the slightest wrong move or pressure on my hand, I will experience pain. My doctor informed me that it may take another 3 weeks before I get back to normal. Well I will give it one more week. Its been two months now after my hand surgery. My tendon is still raised higher than the others and the swelling has reduced a little. The incision looks great, still a little tender. I haven't been able to wear my ring on the finger beside it for over a month now due to the swelling. I saw the surgeon to discuss the problems I was still having with my finger and hand. He informed me on rare occasions some patients develop problems with scar tissue attaching to the tendons. Needless I am being referred to a scar tissue specialist. He is hoping that the physical therapy will help me tremendously. I have a follow up appointment in a month. We shall see where this leads me. If its not one thing its another. It just seems that no matter what I do my body rejects every thing done to it. My body just hates me.
Since I have been on hydrocortisone for my primary and secondary adrenal insufficiency for 3 years now I have not had bone density test. You see, taking a steroid it breaks down the bones in the body. I finally had a test done a couple of weeks ago and needless to say I have had bone loss. My lumbar spinal area bone density is in the low range and in my hips shows early to moderately osteopenic range. Now I am having to take 1200 mg of calcium a day for bone strength. If it has reduced it down that much within a 3 year span, it worries me on how my future will be. I have many risk factors I have to keep in mind; family history of osteoporosis, low dietary intake due to stomach disease, steroid usage of course and low-level bearing exercise. But we all know I can't do much anyways, besides not having the energy, my body just can't handle doing anything physical.
Well, I would like to end my blog by asking for prayers, strong prayers. On Friday the 12th of August, I will have surgery for the permanent neurostimulator from St. Jude. I am scared but eager to see if it helps, and yet don't want any additional pain. I will not be able to do anything for a full week and will have to return for followup visit prior to returning to work. So if you could spare of few minutes please say a prayer for me. Us who have illnesses don't ask for terrible chapters in our lives but the Lord sees it as an opportunity for us to grow closer to him. I may seem wounded but this is my story and I see me being mended.
Recently I had a Esophageal PH study and Esophageal Manometry. Received some good news and also bad, which never fails. The manometry test results came back normal. I am extremely thankful that I have no problems with my esophagus muscle, Yes they are working properly! However, I did find out that the PH study was not so good. At first when I heard the results I was thinking, oh well that's not so bad...but she then informed me that the normal person has an acid reflux of 4 % a day. Okay cool. Well then she told me my result was 20%, OH! That's a huge difference! I was in shock! Needless to say I am having to aggressively treat my acid reflux otherwise the acid could cause major problems with my esophagus and aggravate my digestive issues even more. As of now, I am on 40 mg protonix twice daily, 175 mg of zantec twice daily, galvascon extra strength four times a day. My doctor is hoping that with this aggressive approach it will help prevent my esophagus becoming permanently damaged. I knew I already had Gastroesophageal Reflux Disease - GERD, but I didn't know I had that much reflux.
For my annoying agonizing pain I've had for over 6 years well, about a month ago had my temporary neurostimulator implanted for 8 days to see if it would help with my upper right abdominal pain. I was able to control the strength needed to numb the area by using an Ipod device. It reduced my pain in that area at least 90% and controlled my nausea very well. I was thankful for that. However, due to the needles and wires coming out of my back with a battery taped to my outer skin, I had massive amount of back pain and wasn't prescribed pain medication.
I could never get comfortable, seemed like every move hurt and certainly didn't want to trade one pain for another. I was told that between the needles and the wires perhaps it was hitting a nerve. I am concerned about the back pain but I was assured the permanent one would definitely be beneficial. The permanent neurostimulator, leads and battery will all be under my skin. I am hoping things will work out for the better. When they removed the temporary neurostimulator within 30 to 45 minutes later I started to experience nausea and upper abdominal pain again. I finally received the date for my permanent neurostimulator! August 12th!! I'm excited and nervous. I just want everything to go smooth. The video is when the doctor was removing the leads out of my back without any medications I must add....
Recap on my trigger finger surgery. My finger isn't the same, I still have finger pain and I still don't have the strength in my left hand. I have to watch how I use my hand cause the slightest wrong move or pressure on my hand, I will experience pain. My doctor informed me that it may take another 3 weeks before I get back to normal. Well I will give it one more week. Its been two months now after my hand surgery. My tendon is still raised higher than the others and the swelling has reduced a little. The incision looks great, still a little tender. I haven't been able to wear my ring on the finger beside it for over a month now due to the swelling. I saw the surgeon to discuss the problems I was still having with my finger and hand. He informed me on rare occasions some patients develop problems with scar tissue attaching to the tendons. Needless I am being referred to a scar tissue specialist. He is hoping that the physical therapy will help me tremendously. I have a follow up appointment in a month. We shall see where this leads me. If its not one thing its another. It just seems that no matter what I do my body rejects every thing done to it. My body just hates me.
Since I have been on hydrocortisone for my primary and secondary adrenal insufficiency for 3 years now I have not had bone density test. You see, taking a steroid it breaks down the bones in the body. I finally had a test done a couple of weeks ago and needless to say I have had bone loss. My lumbar spinal area bone density is in the low range and in my hips shows early to moderately osteopenic range. Now I am having to take 1200 mg of calcium a day for bone strength. If it has reduced it down that much within a 3 year span, it worries me on how my future will be. I have many risk factors I have to keep in mind; family history of osteoporosis, low dietary intake due to stomach disease, steroid usage of course and low-level bearing exercise. But we all know I can't do much anyways, besides not having the energy, my body just can't handle doing anything physical.
Well, I would like to end my blog by asking for prayers, strong prayers. On Friday the 12th of August, I will have surgery for the permanent neurostimulator from St. Jude. I am scared but eager to see if it helps, and yet don't want any additional pain. I will not be able to do anything for a full week and will have to return for followup visit prior to returning to work. So if you could spare of few minutes please say a prayer for me. Us who have illnesses don't ask for terrible chapters in our lives but the Lord sees it as an opportunity for us to grow closer to him. I may seem wounded but this is my story and I see me being mended.
Sunday, June 5, 2016
Facing troubling times
As much as we want to return to our old selves, we have to face the battle. I know for me it has brought me closer to God. My health has been one massive tornado that does nothing but destroy. Sure I still worry about what else is going to come up but overall I feel at ease. What we experience here on earth is nothing remotely close as to what we will experience in heaven.
As time passes by I have learned that no matter what I am dealing with I must always listen to my body. For a couple of months now I've had to battle between my stubbornness and pride. It was hard for me to realize I can not do what I used to do. I can't handle stress, physical work etc without my body shutting down. I was such a huge independent person. I would hardly ever ask for help and that's where the battle with my pride came into play. I had to give in and listen to my body. I am hoping it will bring positive results with my health. I finally broke down and told my boss about all my diseases. To my surprise his girlfriend also has an incurable disease. With that said, he was very empathetic and sympathetic, had no idea I was even sick because I don't look sick and was very much willing to help me. I am so very grateful that I work with such awesome people! I have stepped down from a manager to a part time associate manager. My body just can't handle much anymore. I am hoping I can hang on just a little bit longer. I don't want to give up and give in to my diseases. I will continue to fight the fight until I can no longer fight anymore. I have told all my doctors that I have stepped down to part time due to health issues. That was extremely hard and so depressing. I feel like such a failure but I know I didn't ask for all these diseases. All my doctors agreed that I made the right decision. When you truly think about it, I am dealing with a total of 42 health issues, a lot of them I don't even mention cause they aren't truly a huge concern for me. My true concerns are what I share with you all in my blog and on my personal facebook page. Huh, just realized something, 42 health issues and I'm 42 years old. lol
So much has had happened since my last blog. I have been going through the process of filing for disability again. The paper work alone is so time consuming and so extremely depressing. There is so much detailed information you have to enter and when you have to enter every single thing seeing it in black and white is heartbreaking. Its easy to hide all my diseases under my "you don't look sick" face. If I am not approved I am going to be totally shocked and you can bet I will pursue an appeal if I am denied. Its absolutely ridiculous how the system works. There are so many people who take advantage of the government but yet people like me who have life threatening conditions can't get help.
Lately I haven't been able to eat a few bites without immediately getting nauseated. My muscle weakness is constant and I am just so extremely tired all the time. I recently experienced a very scary situation and I was contemplating on going to the hospital at 11pm one night. I had massive amounts of acid reflux, burping and major heart burn that lasted for over 6 + hours. I'm not talking about a little discomfort, I'm talking about a terrifying pain from mid chest area to back area. No matter what medications I took it wasn't helping. I even took an extra protonix to see if that would help and at least 10 tums. I tried home remedies like, eating peanut butter, yogurt, saltine crackers which all it did was give me more pain. I checked my blood pressure and pulse and it was all in the normal range, so I knew it wasn't my heart. I found a lortab pill that I had to use for dental surgery a couple of months ago and knowing it may worsen my symptoms, I took it anyway. I could tell it helped with the pain because I was able to get a little comfortable to get a few hours of sleep. Now I am deathly afraid of eating and drinking anything. I am still in a little discomfort even. My vomiting has increased to 1 to 3 times a week now. I emailed my doctor in Winston Salem NC regarding my concerns. My doctor emails me and orders to have two tests, Esophageal Manometry and Esophagel PH study. Esophageal manometry is a test used to measure the function of the lower esophageal sphincter (the valve that prevents reflux of gastric acid into the esophagus) and the muscles of the esophagus. This test will tell my doctor if my esophagus is able to move food to your stomach normally. A esophageal pH test measures and records the pH in your esophagus to learn if you have gastroesophageal reflux disease (GERD) which I know I already have but it will help determine the effectiveness of medications I am currently on or if surgery is needed. Basically with this test a thin tube with a device on the tip that senses acid is gently passed through the nose, down the esophagus, and positioned about two inches above the lower esophageal sphincter. The tube is fastened to the side of the face with clear tape. The end of the tube that comes out my nose is attached to a portable recorder that is worn on a belt or over my shoulder. The recorder has several buttons on it that I will press to mark certain events. On that note I am not looking forward to this test but I am curious to know what they find out. I have to stop my acid reflux medication 10 days prior to test. I hope I am okay during the waiting period. I already have problems as it is even being on medication for my GERD. I'm just nervous.
This week I am having hand surgery for my trigger finger aka stenosing tenosynovitis. I was diagnosed with this in 2014 and would have a cortisone shot to ease the pain. Well we tried inflammation medications, more shots and nothing helped. Guess my body is just refusing to cooperate with me anymore. Needless to say the only other choice is surgery. Basically the surgeon will work through a small incision near the base of my affected finger will cut open the constricted section of tendon sheath. Then stitch me back up. Short and simple. Recovery time normally is 3 weeks.
Also this month I will temporally be a bionic woman. On the 20th of June I will have a temporary neurostimulator placed along both sides of my spine. I will have wires going up the spinal area and coming out near my bottom of spine area. Wires will be attached to a battery/recording device for a total of 7 days. On the 27th they will remove the leads (wires) and will discuss with me on how I felt during the 7 days. If it is successful then they will continue to set up a permanent one on later date. If the temporary neaurostimulator did not help to ease or remove the pain then there is no sense installing a permanent device. If that is the case I am pretty much out of luck, There is no other options they can do that they already haven't done. This neaurostimulator is my only and last hope.
Recently saw my endocrinologist and explained to her what procedures, surgeries and tests I am having this month. She was extremely concerned considering I have Primary and Secondary Adrenal Insufficiency. She said make sure all your doctors/surgeons know to give you IV cortisol. I am scheduled to have a bone density test this month to see if the steroids are causing damage to my bones. I hope not but I know it will eventually happen. I have no choice but to take steroids to keep me alive. #Adrenalinsufficiency
As you can tell I am so wanting this month over with. All of the tests/procedures/surgeries are all happening over the next 3 weeks. With that being said, I could really use some prayers.
As time passes by I have learned that no matter what I am dealing with I must always listen to my body. For a couple of months now I've had to battle between my stubbornness and pride. It was hard for me to realize I can not do what I used to do. I can't handle stress, physical work etc without my body shutting down. I was such a huge independent person. I would hardly ever ask for help and that's where the battle with my pride came into play. I had to give in and listen to my body. I am hoping it will bring positive results with my health. I finally broke down and told my boss about all my diseases. To my surprise his girlfriend also has an incurable disease. With that said, he was very empathetic and sympathetic, had no idea I was even sick because I don't look sick and was very much willing to help me. I am so very grateful that I work with such awesome people! I have stepped down from a manager to a part time associate manager. My body just can't handle much anymore. I am hoping I can hang on just a little bit longer. I don't want to give up and give in to my diseases. I will continue to fight the fight until I can no longer fight anymore. I have told all my doctors that I have stepped down to part time due to health issues. That was extremely hard and so depressing. I feel like such a failure but I know I didn't ask for all these diseases. All my doctors agreed that I made the right decision. When you truly think about it, I am dealing with a total of 42 health issues, a lot of them I don't even mention cause they aren't truly a huge concern for me. My true concerns are what I share with you all in my blog and on my personal facebook page. Huh, just realized something, 42 health issues and I'm 42 years old. lol
So much has had happened since my last blog. I have been going through the process of filing for disability again. The paper work alone is so time consuming and so extremely depressing. There is so much detailed information you have to enter and when you have to enter every single thing seeing it in black and white is heartbreaking. Its easy to hide all my diseases under my "you don't look sick" face. If I am not approved I am going to be totally shocked and you can bet I will pursue an appeal if I am denied. Its absolutely ridiculous how the system works. There are so many people who take advantage of the government but yet people like me who have life threatening conditions can't get help.
Lately I haven't been able to eat a few bites without immediately getting nauseated. My muscle weakness is constant and I am just so extremely tired all the time. I recently experienced a very scary situation and I was contemplating on going to the hospital at 11pm one night. I had massive amounts of acid reflux, burping and major heart burn that lasted for over 6 + hours. I'm not talking about a little discomfort, I'm talking about a terrifying pain from mid chest area to back area. No matter what medications I took it wasn't helping. I even took an extra protonix to see if that would help and at least 10 tums. I tried home remedies like, eating peanut butter, yogurt, saltine crackers which all it did was give me more pain. I checked my blood pressure and pulse and it was all in the normal range, so I knew it wasn't my heart. I found a lortab pill that I had to use for dental surgery a couple of months ago and knowing it may worsen my symptoms, I took it anyway. I could tell it helped with the pain because I was able to get a little comfortable to get a few hours of sleep. Now I am deathly afraid of eating and drinking anything. I am still in a little discomfort even. My vomiting has increased to 1 to 3 times a week now. I emailed my doctor in Winston Salem NC regarding my concerns. My doctor emails me and orders to have two tests, Esophageal Manometry and Esophagel PH study. Esophageal manometry is a test used to measure the function of the lower esophageal sphincter (the valve that prevents reflux of gastric acid into the esophagus) and the muscles of the esophagus. This test will tell my doctor if my esophagus is able to move food to your stomach normally. A esophageal pH test measures and records the pH in your esophagus to learn if you have gastroesophageal reflux disease (GERD) which I know I already have but it will help determine the effectiveness of medications I am currently on or if surgery is needed. Basically with this test a thin tube with a device on the tip that senses acid is gently passed through the nose, down the esophagus, and positioned about two inches above the lower esophageal sphincter. The tube is fastened to the side of the face with clear tape. The end of the tube that comes out my nose is attached to a portable recorder that is worn on a belt or over my shoulder. The recorder has several buttons on it that I will press to mark certain events. On that note I am not looking forward to this test but I am curious to know what they find out. I have to stop my acid reflux medication 10 days prior to test. I hope I am okay during the waiting period. I already have problems as it is even being on medication for my GERD. I'm just nervous.
This week I am having hand surgery for my trigger finger aka stenosing tenosynovitis. I was diagnosed with this in 2014 and would have a cortisone shot to ease the pain. Well we tried inflammation medications, more shots and nothing helped. Guess my body is just refusing to cooperate with me anymore. Needless to say the only other choice is surgery. Basically the surgeon will work through a small incision near the base of my affected finger will cut open the constricted section of tendon sheath. Then stitch me back up. Short and simple. Recovery time normally is 3 weeks.
Also this month I will temporally be a bionic woman. On the 20th of June I will have a temporary neurostimulator placed along both sides of my spine. I will have wires going up the spinal area and coming out near my bottom of spine area. Wires will be attached to a battery/recording device for a total of 7 days. On the 27th they will remove the leads (wires) and will discuss with me on how I felt during the 7 days. If it is successful then they will continue to set up a permanent one on later date. If the temporary neaurostimulator did not help to ease or remove the pain then there is no sense installing a permanent device. If that is the case I am pretty much out of luck, There is no other options they can do that they already haven't done. This neaurostimulator is my only and last hope.
Recently saw my endocrinologist and explained to her what procedures, surgeries and tests I am having this month. She was extremely concerned considering I have Primary and Secondary Adrenal Insufficiency. She said make sure all your doctors/surgeons know to give you IV cortisol. I am scheduled to have a bone density test this month to see if the steroids are causing damage to my bones. I hope not but I know it will eventually happen. I have no choice but to take steroids to keep me alive. #Adrenalinsufficiency
As you can tell I am so wanting this month over with. All of the tests/procedures/surgeries are all happening over the next 3 weeks. With that being said, I could really use some prayers.
Friday, January 29, 2016
New Year With New Results
When times get tough I reach for Jesus to give me the strength to keep going forward.
5 1/2 years ago I was given devastating news and I cried my heart out literally. I knew then that my health would never be normal again and I knew my health would get worse. Its amazing how much we all take for granted. I am only able to deal with one day at a time. Some might wonder if I would ever get used to it. No, I can't. Every day is different. I see people every day and I think of how they have no worries when eating a simple meal, to have strength to do things and to not have to worry about whether they took their medications without their life being in danger. My diseases frustrate me but I know this is my normal and I am trying my best to keep one step in front of the other.
My gastro doctor said that it seems like my stomach doesn't want to work with me anymore. I have lost more weight and no medications seem to be helping me. He mentioned that I could take a break from taking Bentyl if I thought it wasn't working. Perhaps my body has just gotten used to it. I stopped taking it for about a week but decided to restart after having excruciating pain. After discussing things over with his practicing assistant they remembered a medication that is currently an experimental drug. It has helped some people but isn't necessarily a miracle medication. I was prescribed 5 mgs of Buspirone HCL 3 times a day. He informed me that it can have a relaxing effect on stomach muscles and since my stomach wont expand, he is hoping it will relax it somewhat in order for me to be able to consume more food. I am still not able to consume more food.
I recently had an endoscopy and colonoscopy. The colonoscopy results came back normal. I am very thankful for that especially considering my uncle passed away from colon cancer during my youth. The endoscopy showed mildly abnormal mucosa was found in the gastric body and gastric antrum. The mucosa was edematous and erythematous. No ulcers but multiple biopsies were performed. I should know the results within a week or so. My doctor is wanting me to return to my old pain specialist. I told him the reason why I didn't return was because the pain specialist thought that I needed a spinal cord stimulator to relief my abdominal pain and the thought of it scared me. He mentioned that maybe he can come up with other solutions but the spinal cord stimulator just very well may be my only resort. I just might have to give in to my fear in order to get relief. It is really hard to constantly be in pain. No position feels good. Any movement like sweeping for example, I hurt really bad, sometimes to the point where I get nauseated because of the pain. I am just so sick of the pain.
We all know with diseases your teeth are exposed to a lot of acid, gum and tooth weakness, bone loss etc. I have had 2 oral surgeries within a month span. First one was because of a dead tooth. Second, was a cyst. Seems like a simple thing but what I am praying for is for the cyst not to return. I was told that if it does return and/or develops in other areas I could be facing yet another rare condition OKC, Odontogenic Keratcyst. It is basically a very destructive and rapid growth that invades the tissues and bone. In order to control the cysts a part of the jaw bone would have to be removed. I was told its not cancer but it is aggressive like cancer. Needless to say I hope and pray the cyst does not return. Certainly don't need another rare condition.
I recently saw my endocrinologist. Thyroid blood work determined that my TSH was a little low but T4 was normal. Medication was adjusted a little and will need to return in 8 weeks for recheck. My doctor is concerned that I haven't had a bone density test since I started on hydrocortisone in 2013 for my adrenal insufficiency. Unfortunately being on steroids it tends to weaken your bones. She wants me to continue taking vitamin D and start taking calcium pills. Yeah more pills.
I heard on a Christian radio station recently that there is purpose in our pain and to remind us where our hope is. This is my new life and I am not letting down. I learned from my past and I will continue learning my future. Our Lord gave me the hope I need to continue and I pray every day for his healing hands.
https://youtu.be/ydTaBl2Amvg
Sunday, December 27, 2015
My results from my roller coaster life
I have a glimpse of how Jesus felt with he was betrayed. The greatest disappointment in life is knowing that the ones we care for are the ones who don't try to understand and turn their backs towards you. Having rare diseases that are invisible are extremely hard for anyone to deal with. People judge you by your appearance. They look at you like you are great, beautiful and normal. Yes my diseases are invisible but they have scarred and damaged me for the rest of my life. I try to stay strong, work hard and act like I am normal but there comes a time when you ask yourself when is it time to just rest and tend to my health? I can't manage everything and everyone but there is no shame putting myself first.
Food is one of the main comforts to everyone. I never would have thought it would be my worse enemy. There is no comfort with eating. Taste buds love it but my stomach and intestines beg to differ. Its like a constant roller coaster and I'm ready to get off this ride. Lately the pain under my right rib cage has become extremely bad. I went to see my gastroenterologist recently, had lots of blood work done but the results were all within the low normal range. Soon I will be scheduled a CT just to make sure we are not missing anything. If anything it will be categorized as a spastic colon. Doctor prescribed me 50 mg of tramadol to see if it would help with my pain. I was really apprehensive about being placed on pain medication because it really shuts down my whole system. Meaning, I could go for days without running to the bathroom. With also having IBS, its not in my favor. I noticed its help ease some of the pain but not all.
I have lost another 5 lbs. I am now 130 lbs. I am not trying to loose the weight and I can see the weight loss in my face now. My cheeks seem to be caving in a little. Which brings me to another subject... Recently I saw my dentist to take care of a small cavity. It wasn't until after digging and digging she realized the tooth was actually dead. She took another x-ray and it also showed an abscess. I was never bothered with that tooth. A day later I am in the office of an oral surgeon. The surgeon had to remove my tooth along with the abscess. What I thought was interesting was during the whole surgery, I was given an IV injection of 100 mg of cortisol to prevent an adrenal crises. He wanted to be safe than sorry, which I really appreciate. Two weeks went by and it was time for a recheck with the oral surgeon. During those two weeks he had another specialist look closely at my x-rays. I was told there is an area in my gum line and jaw bone that looks suspicious and needs to be addressed. I am scheduled for another surgery next week. A biopsy will be performed to see if I have periodontal disease.
I am on a lot of support groups on Facebook for every single one of my diseases. There have been so many that have died with just one of my diseases. I don't know why or how I am still alive with the 7 diseases I have. I know for me, I have many disappointments in myself. I can't do all that I want to do. I can't walk long distances without leg pain, fatigue and dizziness. I can't bend over without having extreme nausea. I don't have the strength I used to have. My blood pressure is always low to the point to where my doctors become concerned. I foresee my future to be gloomy with one ray of sun shine peaking though the clouds. That one ray will be my reminder that God is still with me. Our Lord has a plan for us all. Tell me Jesus what is our ending? Will our ending be beautiful? Will I be remembered?
Food is one of the main comforts to everyone. I never would have thought it would be my worse enemy. There is no comfort with eating. Taste buds love it but my stomach and intestines beg to differ. Its like a constant roller coaster and I'm ready to get off this ride. Lately the pain under my right rib cage has become extremely bad. I went to see my gastroenterologist recently, had lots of blood work done but the results were all within the low normal range. Soon I will be scheduled a CT just to make sure we are not missing anything. If anything it will be categorized as a spastic colon. Doctor prescribed me 50 mg of tramadol to see if it would help with my pain. I was really apprehensive about being placed on pain medication because it really shuts down my whole system. Meaning, I could go for days without running to the bathroom. With also having IBS, its not in my favor. I noticed its help ease some of the pain but not all.
I have lost another 5 lbs. I am now 130 lbs. I am not trying to loose the weight and I can see the weight loss in my face now. My cheeks seem to be caving in a little. Which brings me to another subject... Recently I saw my dentist to take care of a small cavity. It wasn't until after digging and digging she realized the tooth was actually dead. She took another x-ray and it also showed an abscess. I was never bothered with that tooth. A day later I am in the office of an oral surgeon. The surgeon had to remove my tooth along with the abscess. What I thought was interesting was during the whole surgery, I was given an IV injection of 100 mg of cortisol to prevent an adrenal crises. He wanted to be safe than sorry, which I really appreciate. Two weeks went by and it was time for a recheck with the oral surgeon. During those two weeks he had another specialist look closely at my x-rays. I was told there is an area in my gum line and jaw bone that looks suspicious and needs to be addressed. I am scheduled for another surgery next week. A biopsy will be performed to see if I have periodontal disease.
I am on a lot of support groups on Facebook for every single one of my diseases. There have been so many that have died with just one of my diseases. I don't know why or how I am still alive with the 7 diseases I have. I know for me, I have many disappointments in myself. I can't do all that I want to do. I can't walk long distances without leg pain, fatigue and dizziness. I can't bend over without having extreme nausea. I don't have the strength I used to have. My blood pressure is always low to the point to where my doctors become concerned. I foresee my future to be gloomy with one ray of sun shine peaking though the clouds. That one ray will be my reminder that God is still with me. Our Lord has a plan for us all. Tell me Jesus what is our ending? Will our ending be beautiful? Will I be remembered?
Tuesday, November 10, 2015
It's okay not to be okay
There is a purpose for every one of us. Do you listen to the word of God and lead your thoughts, feelings and actions towards him or against? I know for me I try to listen, try to determine what my purpose here is and its hard to know if your doing right in Gods eyes. I try to stay positive and to give my very best at everything I do. My body would always tell me differently. For me its a constant battle. To everyone's surprise I still work a full time job as a store manager. Yep, 7 diseases and other health conditions and I still work. Not sure if that's considered dedication, stubbornness or just plain stupidity. With that said I question myself, am I doing the right thing? Am I pushing myself too much? I haven't updated my blog in the past couple of months because of a change with work. I was promoted and it has surely been a struggle. I have the following health diseases/conditions: Gastroparesis, Thyroid Disease, Primary Adrenal Insufficiency, Secondary Adrenal Insufficiency, Empty Sella Syndrome (flat pituitary gland), Raynaud's Disease, Irritable Bowel Syndrome, Dumping Syndrome, GERD, Anemic, Pylorospasms, Colon Spasms, Vitamin D and Iron Deficiency.
Lets do some catching up...
From my last blog I mentioned I wanted a second opinion from an endocrinologist. When your doctor tells you they don't know how to treat you and never returns your phone calls, its time to make a change. You see I have to take medications to keep me alive. I can't take a gamble on my life just because you don't know. I got a second opinion and I am so glad I did. Hydrocortisone is basically measured on your body weight since there no real accurate test to test cortisol levels. It is too dangerous for me to stop taking my medication or use a different medication to test. Doctors determine the amounts of medication by looking at your body weight and height. Doctors use a table which shows ample amount of medication to be admitted. If you get too much cortisol it will break down bone marrow and possible breakage will occur. I am 135 lbs at 5'3" I was told I needed to be on 20 mg of hydrocortisone daily; 10 mg in the morning, 5 mg early afternoon, 5 mg evening. I must say making this change the extra 5 mg in the early afternoon has really helped me tremendously. I knew something wasn't right because I was having a difficult time remembering things. With the extra 5 mg, I am doing so much better. My doctor also rechecked my thyroid and also tested me for celiac. Thyroid is good and no signs of celiac disease. I am happy with the results.
I recently had a physical including all blood work. Some results came back completely normal which I am very thankful for, others were abnormally below like protein, glucose and creatinine. Iron is still low even with me being on iron pills for over 5 months. All of this doesn't surprise me. I know my body isn't working right and it's okay not to be okay.
Now my stomach is a different story. I had another electrogastrogram which studies your stomach rhythm for digestion and intake volume. The results were not what I had hoped. The test showed that my intake volume is pretty much the same. Normal volume intake is 600cc, I could only consume 300cc. My stomach will never be able to expand, therefore I can only consume small amounts of food at a time. If I try to consume more food than it can hold, I become extremely sick, abdominal and colon becomes excruciating painful. Since my pyloroplasty surgery, my stomach rhythm has also suffered. Normal stomach rhythm is 3 per minute. My stomach rhythm reduced to 1. So even with my stomach rhythm is still very weak I am thankful I still have some movement. Things could be so much more worse and I know that. There are so many people out there that are going through so much more. So many have died to even 1 of my diseases. What amazes me is I am still alive. I listened to my body and listened to God, I knew something wasn't right with me. I have no shame whatsoever for gong to any doctor when I have a concern. What is your body telling you? Don't ever wait to see if the symptoms you are having go away. Don't second guess yourself or listen to others when they say you look fine. I meet people all the time and no one can tell I am sick. You know that old saying, don't judge a book by its cover? Our appearance covers up what is deep within our story.
Lets do some catching up...
From my last blog I mentioned I wanted a second opinion from an endocrinologist. When your doctor tells you they don't know how to treat you and never returns your phone calls, its time to make a change. You see I have to take medications to keep me alive. I can't take a gamble on my life just because you don't know. I got a second opinion and I am so glad I did. Hydrocortisone is basically measured on your body weight since there no real accurate test to test cortisol levels. It is too dangerous for me to stop taking my medication or use a different medication to test. Doctors determine the amounts of medication by looking at your body weight and height. Doctors use a table which shows ample amount of medication to be admitted. If you get too much cortisol it will break down bone marrow and possible breakage will occur. I am 135 lbs at 5'3" I was told I needed to be on 20 mg of hydrocortisone daily; 10 mg in the morning, 5 mg early afternoon, 5 mg evening. I must say making this change the extra 5 mg in the early afternoon has really helped me tremendously. I knew something wasn't right because I was having a difficult time remembering things. With the extra 5 mg, I am doing so much better. My doctor also rechecked my thyroid and also tested me for celiac. Thyroid is good and no signs of celiac disease. I am happy with the results.
I recently had a physical including all blood work. Some results came back completely normal which I am very thankful for, others were abnormally below like protein, glucose and creatinine. Iron is still low even with me being on iron pills for over 5 months. All of this doesn't surprise me. I know my body isn't working right and it's okay not to be okay.
Now my stomach is a different story. I had another electrogastrogram which studies your stomach rhythm for digestion and intake volume. The results were not what I had hoped. The test showed that my intake volume is pretty much the same. Normal volume intake is 600cc, I could only consume 300cc. My stomach will never be able to expand, therefore I can only consume small amounts of food at a time. If I try to consume more food than it can hold, I become extremely sick, abdominal and colon becomes excruciating painful. Since my pyloroplasty surgery, my stomach rhythm has also suffered. Normal stomach rhythm is 3 per minute. My stomach rhythm reduced to 1. So even with my stomach rhythm is still very weak I am thankful I still have some movement. Things could be so much more worse and I know that. There are so many people out there that are going through so much more. So many have died to even 1 of my diseases. What amazes me is I am still alive. I listened to my body and listened to God, I knew something wasn't right with me. I have no shame whatsoever for gong to any doctor when I have a concern. What is your body telling you? Don't ever wait to see if the symptoms you are having go away. Don't second guess yourself or listen to others when they say you look fine. I meet people all the time and no one can tell I am sick. You know that old saying, don't judge a book by its cover? Our appearance covers up what is deep within our story.
Leave your worries with God. If it wasn't for our Lord and Savior I would have been lost.
I will continue living life to become closer to him and strengthen my will to keep fighting my fight.
Thursday, July 23, 2015
fighting the fight
God gives you blessings along the way. Realizing those blessings gives you the courage to continue fighting the fight. These past 5 years have brought me so many health problems but even to this very day, I keep pushing forward and surrender all my troubles to him.
Just when you think there is no cure, a little determination and guidance things began to change. I know it has been awhile since my last blog but I wanted to gather more information on recent test results. About a month ago I had another gastric emptying test done to determine if the pyloroplasty surgery was a success or not. For my gastric emptying test I had a difficult time finishing the radioactive eggs and toast. I can't eat a large amount of food without getting nauseous and have abdominal pain. After a week of patiently waiting, I finally got the results. I had improved with some symptoms during the last 6 months since pyloroplasty surgery. Vomiting has decreased 90%, bloating decreased 75%, hunger increased about 50% and I am now able to tolerate salads and more regular foods. Pain and discomfort are still present. Weight has stable for a couple of months now. The results on my gastric emptying test after eating radioactive eggs and toast: 0 minutes I was at 100% retention, 60 minutes normal range is (37-90%) I was at 66.1%, 120 minutes normal range (30-60%) I dropped to 17.1%, 180 minutes normal range (10-29%) I was at 4.8%, 240 minutes normal range (0-9%) I was at 2.4%. So in simple terms the positive aspect, I no longer have any food retention. Which is good. I don't have to worry about food left in my stomach for 6 to 8 hours later after eating!! The negative aspect, I now have dumping syndrome. I switched from one thing to another. With the pyloroplasty surgery my pyloris is permanently open, therefore foods are dumped into my intestines without fully being digested. Now I know my stomach still is paralyzed because of it not being able to expand but what about my stomach rhythm? Well in a few months I will have another electrogastrogram to test my stomach rhythm. I am praying my stomach rhythm is okay. I don't want to have to get a stomach pacemaker. On the other hand, I still have massive right upper quadrant pain, which I have had for over 4 yrs now. My doctor seems to think the pain is coming from some other organ. He suspects it is my colon. My medication of bentyl was increased and started me on Citrucel. If pain persist, which I am sure it will, my doctor will want to do a full body MRI with contrast to find out what exactly is causing the pain.
I recently went in for a follow up visit with my endocrinologist to discuss the concern I have with dumping syndrome, energy levels basically dropping and absorption concerns with medications for my adrenal insufficiency. After explaining to her what I was diagnosed with she immediately became concerned yet was at a loss. You see, having dumping syndrome foods, medication, fluids not being properly digested in my stomach and going directly into intestines puts my body into stress and I'm not getting the nutrients I need. For 8 weeks, I had to go to another one of my doctors office every 2 weeks just to get a B12 shot. I am vitamin D deficient again. I am extremely concerned because if my body isn't getting what it needs, I am going to be in a world of hurt. You see if I am not absorbing my hydrocortisone for the primary and secondary adrenal insufficiency then I could become so weak, very sick to my stomach, faint or end up in a coma. To my surprise after bouncing thoughts back and forth between the both of us she was at a loss as to what I should do. The only thing she kept saying was just stress dose. Take 15 mg in the morning instead of 10 mg and in the evening take 10 mg instead of 5 mg of hydrocortisone but don't do it all the time because I could develop crushing syndrome. She said to increase medications if I am extremely weak. I know for a fact there are other ways to make sure I am getting enough hydrocortisone so I won't go into a downward spiral. When I walked out of my doctors office I knew I needed to find another endocrinologist. I can't just take a chance like that with my life. I need to know what I should do and how to handle it all. Not just wing it like she basically put it. So when I go back to my other doctor next week to get rechecked on my B12 levels, I am going to ask for a referral to a new endocrinologist. I really hate to do it especially considering she really saved my life by testing my cortisol levels and finding out I have 3 additional diseases.
I'm just tired. I am tired of going to all my doctors appointments when I have a day off of work. I am tired of having to constantly remember to pop another pill for this or for that. I am tired of not having any energy anymore, constantly hurting. Being 41 years old I never knew I would end up with so many diseases. Yet I know God is with me. So I will continue fighting the fight.
https://youtu.be/sQhGnNEFtPk
Just when you think there is no cure, a little determination and guidance things began to change. I know it has been awhile since my last blog but I wanted to gather more information on recent test results. About a month ago I had another gastric emptying test done to determine if the pyloroplasty surgery was a success or not. For my gastric emptying test I had a difficult time finishing the radioactive eggs and toast. I can't eat a large amount of food without getting nauseous and have abdominal pain. After a week of patiently waiting, I finally got the results. I had improved with some symptoms during the last 6 months since pyloroplasty surgery. Vomiting has decreased 90%, bloating decreased 75%, hunger increased about 50% and I am now able to tolerate salads and more regular foods. Pain and discomfort are still present. Weight has stable for a couple of months now. The results on my gastric emptying test after eating radioactive eggs and toast: 0 minutes I was at 100% retention, 60 minutes normal range is (37-90%) I was at 66.1%, 120 minutes normal range (30-60%) I dropped to 17.1%, 180 minutes normal range (10-29%) I was at 4.8%, 240 minutes normal range (0-9%) I was at 2.4%. So in simple terms the positive aspect, I no longer have any food retention. Which is good. I don't have to worry about food left in my stomach for 6 to 8 hours later after eating!! The negative aspect, I now have dumping syndrome. I switched from one thing to another. With the pyloroplasty surgery my pyloris is permanently open, therefore foods are dumped into my intestines without fully being digested. Now I know my stomach still is paralyzed because of it not being able to expand but what about my stomach rhythm? Well in a few months I will have another electrogastrogram to test my stomach rhythm. I am praying my stomach rhythm is okay. I don't want to have to get a stomach pacemaker. On the other hand, I still have massive right upper quadrant pain, which I have had for over 4 yrs now. My doctor seems to think the pain is coming from some other organ. He suspects it is my colon. My medication of bentyl was increased and started me on Citrucel. If pain persist, which I am sure it will, my doctor will want to do a full body MRI with contrast to find out what exactly is causing the pain.
I recently went in for a follow up visit with my endocrinologist to discuss the concern I have with dumping syndrome, energy levels basically dropping and absorption concerns with medications for my adrenal insufficiency. After explaining to her what I was diagnosed with she immediately became concerned yet was at a loss. You see, having dumping syndrome foods, medication, fluids not being properly digested in my stomach and going directly into intestines puts my body into stress and I'm not getting the nutrients I need. For 8 weeks, I had to go to another one of my doctors office every 2 weeks just to get a B12 shot. I am vitamin D deficient again. I am extremely concerned because if my body isn't getting what it needs, I am going to be in a world of hurt. You see if I am not absorbing my hydrocortisone for the primary and secondary adrenal insufficiency then I could become so weak, very sick to my stomach, faint or end up in a coma. To my surprise after bouncing thoughts back and forth between the both of us she was at a loss as to what I should do. The only thing she kept saying was just stress dose. Take 15 mg in the morning instead of 10 mg and in the evening take 10 mg instead of 5 mg of hydrocortisone but don't do it all the time because I could develop crushing syndrome. She said to increase medications if I am extremely weak. I know for a fact there are other ways to make sure I am getting enough hydrocortisone so I won't go into a downward spiral. When I walked out of my doctors office I knew I needed to find another endocrinologist. I can't just take a chance like that with my life. I need to know what I should do and how to handle it all. Not just wing it like she basically put it. So when I go back to my other doctor next week to get rechecked on my B12 levels, I am going to ask for a referral to a new endocrinologist. I really hate to do it especially considering she really saved my life by testing my cortisol levels and finding out I have 3 additional diseases.
I'm just tired. I am tired of going to all my doctors appointments when I have a day off of work. I am tired of having to constantly remember to pop another pill for this or for that. I am tired of not having any energy anymore, constantly hurting. Being 41 years old I never knew I would end up with so many diseases. Yet I know God is with me. So I will continue fighting the fight.
https://youtu.be/sQhGnNEFtPk
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