Wednesday, September 18, 2013
Wednesday, September 11, 2013
Roller Coaster
Today I had my second appointment with my new rheumatologist. I like her. Dr. Banerjee. At my last appointment she spent a lot of time with my husband and me. She was very thorough and did a full exam and workup. I could tell the whole time that she had a suspicion about my tentative Undifferentiated Connective Tissue Disease diagnosis. I was hopeful because I hate the harsh medication: plaquenil- an anti-malarial med.
I went through the exam and tests. I accepted her referrals to a dermatologist and physical therapist. My skin is always irritated in one way or another so I would love some relief. The physical therapy I could give or take. It is for joint and muscle pain, but I have seen them before to no avail. My derm appointment is soon. I am ready to feel better with better treatment at the root of the issues.
At the appointment today I got some unsettling news. After going through my medical records/history and reviewing my lab results she does not feel there is any rheumatological disease. GOOD NEWS plus no plaquenil. But......some electrolyte levels we low; sodium and potassium. In addition to my skin irritation, hyperpigmentation, and symptoms mimicking lupus, she strongly feels there is adrenal insufficiency. That is Addison's disease. BAD NEWS.
Doctors have been dancing around this with me for years. It is part of APS Type II. But I am not ready for more tests. She suggested another skin biopsy, this time of the vasculitis on my hands. Last time I had one of the face that proved hyperpigmentation. She also is going to speak to my endocrinologist about further testing. I have been tested before, but there is more they can do.
I lost it. I broke down and cried in her office. Blubbering, telling her I was glad to be relieved of one diagnosis, I am just not ready for more. ....or more tests and waiting. I thought I could have a break for a little while. But I want to feel better.
On a happy note, today is my seven week birthday after surgery. So far, so good.
I went through the exam and tests. I accepted her referrals to a dermatologist and physical therapist. My skin is always irritated in one way or another so I would love some relief. The physical therapy I could give or take. It is for joint and muscle pain, but I have seen them before to no avail. My derm appointment is soon. I am ready to feel better with better treatment at the root of the issues.
At the appointment today I got some unsettling news. After going through my medical records/history and reviewing my lab results she does not feel there is any rheumatological disease. GOOD NEWS plus no plaquenil. But......some electrolyte levels we low; sodium and potassium. In addition to my skin irritation, hyperpigmentation, and symptoms mimicking lupus, she strongly feels there is adrenal insufficiency. That is Addison's disease. BAD NEWS.
Doctors have been dancing around this with me for years. It is part of APS Type II. But I am not ready for more tests. She suggested another skin biopsy, this time of the vasculitis on my hands. Last time I had one of the face that proved hyperpigmentation. She also is going to speak to my endocrinologist about further testing. I have been tested before, but there is more they can do.
I lost it. I broke down and cried in her office. Blubbering, telling her I was glad to be relieved of one diagnosis, I am just not ready for more. ....or more tests and waiting. I thought I could have a break for a little while. But I want to feel better.
On a happy note, today is my seven week birthday after surgery. So far, so good.
Monday, September 2, 2013
Snack For The Soul
When I referred to my surgery date in my last post as my new birthday, I had no idea how deep those feelings would really run. Every day I wake up feeling a little different. Every day there is some flash of novelty and comfort in my new world. Every day I become increasingly more aware of all the gifts that surround us. That all sounds so mushy and cliché, but it is so blatantly true.
I just had my 4-week follow up appointment with both of the surgeons who performed the procedure of implanting the Enterra Gastric Neurostimulator. I have to say that I had been really nervous about the appointments. I seemed to have hit a plateau shortly after the procedure and didn't seem to be improving in terms of nausea, fullness, and lack of appetite. For some reason in my mind, the natural processes in the world are in my control...... (Although it never seems to work out the way I want it). I was preparing myself to hear all the things I had done wrong since the surgery that would be halting my progress. I was so prepared for all the wrong things.
My first appointment was with Dr. Weiner, my gastroenterologist, and the Medtronic representative. Medtronic is the manufacturer of the Enterra and the rep helps the doctor become familiar with the treatment and technology.
At that appointment they asked about my symptoms. They were concerned with my level of nausea because that was one of my worst symptoms prior to surgery. I am happy to report that it has gone down at least 50%-75%. I complained of a lot of cramping. I describe it as chugging a glass of water and then sprinting...that kind of side cramp is what I feel. They explained to me that my stomach, the muscle, hasn't been used this way in a long time. As with any atrophied muscle, it will fatigue, cramp, and get sore. That's normal. I also complained of constipation. (TMI? Well this blog is to help inform, comfort, or inspire those in similar situations, so we have to talk truth) Dr. Weiner talked about my medications and my absorption rate. With my stomach processing more before things move into the small intestine, I am absorbing more of everything (Woot Woot!!) this leading to my system getting overloaded. He reduced one medication in half.
All in all, the symptoms, pain, soreness, and novelties are all normal and a positive sign. The rep said, statistically, I am in the top 5% of patients in terms of progress at this point. The doctor was really pleased as were my husband and I. Even the nurse and front office woman were in on the excitement as we have gone through this journey together.
"Weight gain at this point?" you may ask. Well, I am almost at my pre-op appointment weight again, but I am going in the right direction and that is more than we can say for the past several years. Appetite? I wake up hungry nearly every day. My portions are no bigger, just a better variety and more consistent. My diet restrictions are the same but I am able to enjoy more meats, vegetables, and fat because they no longer sit in my stomach for hours on end. I still get a distended belly every time I eat or drink. That will likely continue to happen just as an untreatable symptom of gastroparesis, but my stomach should grow a little so I can eat better portion sizes in time.
To check the device itself (remember it is sewn into a pocket of subcutaneous tissue in my abdomen) they held a large smart-phone looking thing (called The Enterragater, gggrrr) up to my belly where the device is, pressed it against my skin, and the screen started showing them information. Based on that information, which all looked positive, along with my symptoms they decided to bump the voltage up a notch. They told me to expect a fluttering sensation and possible nausea for the next 24 hours but it would subside. Essentially, that should increase my stomach activity a little more. They were right. Almost instantaneously, with a giggle, like feeling your baby kick for the first time, the fluttering began. I am lucky to say it never made me nauseous, just tired.
Unfortunately, with the start of the new school year I managed to catch a nasty cold. This has been a small setback, flaring up some unwanted symptoms, but what cold doesn't? We were told we should be able to see full effects of the device in 6 months to a year. I also have managed to unknowingly, in the fog of euphoria, ingest dairy, chicken, and strawberries - all of which I have allergies of some degree to. So a few more kinks, but thus is life.
The second surgeon merely needed to check the incisions. He works closely with Dr. Weiner and so he was already up to date on my progress and was pleased. Can I type that word enough? It is such a foreign feeling to me to walk out of doctor's offices with hope and positive reports.
I am (actively trying) not to allow the fear to hold me back. I am still trying to be conscious, careful, and conscientious, but I am human and sometimes forget to double or triple check ingredient lists or that I had strawberries yesterday so they aren't allowed for a few days if I would like to continue to feel well. And I don't beat myself up over a minor mistake because it will pass.
My diabetes is a bit of a roller coaster right now. I see my endocrinologist next week. With absorption rates changing and fluctuating so are my insulin needs and blood sugar levels. I have been struggling with a lot of lows which has only encouraged more calories. This crazy balancing act that is life can be fun sometimes. I am serious; I am enjoying this challenge.
I am slowly moving back in to normal daily activities. I am beginning to move better and with less pain. It will be a work in progress to learn to move with this inside of me, but as with anything, we adapt. I am smiling more. I am laughing more. I am enjoying more. It is amazing what a snack can do for your soul.
I just had my 4-week follow up appointment with both of the surgeons who performed the procedure of implanting the Enterra Gastric Neurostimulator. I have to say that I had been really nervous about the appointments. I seemed to have hit a plateau shortly after the procedure and didn't seem to be improving in terms of nausea, fullness, and lack of appetite. For some reason in my mind, the natural processes in the world are in my control...... (Although it never seems to work out the way I want it). I was preparing myself to hear all the things I had done wrong since the surgery that would be halting my progress. I was so prepared for all the wrong things.
My first appointment was with Dr. Weiner, my gastroenterologist, and the Medtronic representative. Medtronic is the manufacturer of the Enterra and the rep helps the doctor become familiar with the treatment and technology.
At that appointment they asked about my symptoms. They were concerned with my level of nausea because that was one of my worst symptoms prior to surgery. I am happy to report that it has gone down at least 50%-75%. I complained of a lot of cramping. I describe it as chugging a glass of water and then sprinting...that kind of side cramp is what I feel. They explained to me that my stomach, the muscle, hasn't been used this way in a long time. As with any atrophied muscle, it will fatigue, cramp, and get sore. That's normal. I also complained of constipation. (TMI? Well this blog is to help inform, comfort, or inspire those in similar situations, so we have to talk truth) Dr. Weiner talked about my medications and my absorption rate. With my stomach processing more before things move into the small intestine, I am absorbing more of everything (Woot Woot!!) this leading to my system getting overloaded. He reduced one medication in half.
All in all, the symptoms, pain, soreness, and novelties are all normal and a positive sign. The rep said, statistically, I am in the top 5% of patients in terms of progress at this point. The doctor was really pleased as were my husband and I. Even the nurse and front office woman were in on the excitement as we have gone through this journey together.
"Weight gain at this point?" you may ask. Well, I am almost at my pre-op appointment weight again, but I am going in the right direction and that is more than we can say for the past several years. Appetite? I wake up hungry nearly every day. My portions are no bigger, just a better variety and more consistent. My diet restrictions are the same but I am able to enjoy more meats, vegetables, and fat because they no longer sit in my stomach for hours on end. I still get a distended belly every time I eat or drink. That will likely continue to happen just as an untreatable symptom of gastroparesis, but my stomach should grow a little so I can eat better portion sizes in time.
To check the device itself (remember it is sewn into a pocket of subcutaneous tissue in my abdomen) they held a large smart-phone looking thing (called The Enterragater, gggrrr) up to my belly where the device is, pressed it against my skin, and the screen started showing them information. Based on that information, which all looked positive, along with my symptoms they decided to bump the voltage up a notch. They told me to expect a fluttering sensation and possible nausea for the next 24 hours but it would subside. Essentially, that should increase my stomach activity a little more. They were right. Almost instantaneously, with a giggle, like feeling your baby kick for the first time, the fluttering began. I am lucky to say it never made me nauseous, just tired.
Unfortunately, with the start of the new school year I managed to catch a nasty cold. This has been a small setback, flaring up some unwanted symptoms, but what cold doesn't? We were told we should be able to see full effects of the device in 6 months to a year. I also have managed to unknowingly, in the fog of euphoria, ingest dairy, chicken, and strawberries - all of which I have allergies of some degree to. So a few more kinks, but thus is life.
The second surgeon merely needed to check the incisions. He works closely with Dr. Weiner and so he was already up to date on my progress and was pleased. Can I type that word enough? It is such a foreign feeling to me to walk out of doctor's offices with hope and positive reports.
I am (actively trying) not to allow the fear to hold me back. I am still trying to be conscious, careful, and conscientious, but I am human and sometimes forget to double or triple check ingredient lists or that I had strawberries yesterday so they aren't allowed for a few days if I would like to continue to feel well. And I don't beat myself up over a minor mistake because it will pass.
My diabetes is a bit of a roller coaster right now. I see my endocrinologist next week. With absorption rates changing and fluctuating so are my insulin needs and blood sugar levels. I have been struggling with a lot of lows which has only encouraged more calories. This crazy balancing act that is life can be fun sometimes. I am serious; I am enjoying this challenge.
I am slowly moving back in to normal daily activities. I am beginning to move better and with less pain. It will be a work in progress to learn to move with this inside of me, but as with anything, we adapt. I am smiling more. I am laughing more. I am enjoying more. It is amazing what a snack can do for your soul.
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