Today is a perfect Sunday morning. I went to Ongpin Street to buy something. I met my monstrous obgyne secretary along the way. It was just a coincidence. Why? Should there be a reason for everybody's existence?
In fairness, I don't have grutch against her. I just hate her boss. We had a little chit chat. Why I left with teary eyes again? So what, if autoimmune disorder is karma? So what, if I have bad karma?
Being infertile doesn't make me a second class citizen. I surrender to my fate. I don't want to regret in the future why I did not struggle to overcome infertility.
Saturday, November 29, 2014
Palpitating
Lately, I have palpitation and anxiety. Could this be the aide effects of Viagra? What caused my blood flow impedance?
where to do ivf
I shun away from Hong Kong because it is expensive. I don't like Taichung because of the PGD issue. Some says Taichung's clinic works like a production line. I doubt the success rate in Philippines. Should I discuss with Taichung over the PGD issue again? Or should I just look for another ivf center. Here I am again fickle minded on where to do my ivf.
Many doctors don't believe immunology as a main factor for infertility. Should I still check Taipei? My god sister suggested a Hong Kong clinic. She said that clinic believes in immunology. Though more expensive, I wish to give it a try.
http://comtecmed.com/MSRM/2014/Uploads/Editor/PPT/Leong.pdf
Think, think and think. It also sounds scary. They use tnf-a inhibitor.
Many doctors don't believe immunology as a main factor for infertility. Should I still check Taipei? My god sister suggested a Hong Kong clinic. She said that clinic believes in immunology. Though more expensive, I wish to give it a try.
http://comtecmed.com/MSRM/2014/Uploads/Editor/PPT/Leong.pdf
Think, think and think. It also sounds scary. They use tnf-a inhibitor.
Wednesday, November 26, 2014
Seventh iui
I am sick and tired of iui. But, there is a good reason to do so. This will let me validate the tissue crossmatch theory of my immunologist. I planned to do the ivf as soon as possible but the egg retrieval and embryo implantation will fall on very unholy schedule. Everyone will be in vacation mode. Perhaps, the lab is also closed.
Rather than trying to conceive naturally, we will try iui for the last time. My new obgyne uttered a joke: She said I am a veteran iui patient and I feel very at home and comfortable with IUI. I told her that I am sick and tired of IUI. She asked me to bear the pain as she insert the speculum. Upon her withdrawal, she asked how does it feel? I said I enjoyed! Everyone else laughed.
I hope seven will be my new lucky number. When did I started to believe in lucky number and lucky color thing? Oops, what is my lucky color? Seven means infinite. Would this mean infinite iui? I believe luck is on my side. Because I have just whispered to god while our plane cruised at high altitude last week. I just don't know whether god has heard my prayers because the propeller is noisier than my whisper. I hope my seventh iui will be my answered prayer. I promised god to go to putuoshan for pilgrimage again next year.
Seriously, what are my chances? My husband has 1% normal morphology and my uterine artery doppler says i have large blood flow impedance. pulsatility index was over 3.0.
https://www.auanet.org/university/abstract_detail.cfm?id=MP68-11&meetingID=14ORL
http://www.fertstert.org/article/S0015-0282%2897%2900333-6/abstract
http://www.willowtreeclinic.com/category/womens-health/
Rather than trying to conceive naturally, we will try iui for the last time. My new obgyne uttered a joke: She said I am a veteran iui patient and I feel very at home and comfortable with IUI. I told her that I am sick and tired of IUI. She asked me to bear the pain as she insert the speculum. Upon her withdrawal, she asked how does it feel? I said I enjoyed! Everyone else laughed.
I hope seven will be my new lucky number. When did I started to believe in lucky number and lucky color thing? Oops, what is my lucky color? Seven means infinite. Would this mean infinite iui? I believe luck is on my side. Because I have just whispered to god while our plane cruised at high altitude last week. I just don't know whether god has heard my prayers because the propeller is noisier than my whisper. I hope my seventh iui will be my answered prayer. I promised god to go to putuoshan for pilgrimage again next year.
Seriously, what are my chances? My husband has 1% normal morphology and my uterine artery doppler says i have large blood flow impedance. pulsatility index was over 3.0.
https://www.auanet.org/university/abstract_detail.cfm?id=MP68-11&meetingID=14ORL
http://www.fertstert.org/article/S0015-0282%2897%2900333-6/abstract
http://www.willowtreeclinic.com/category/womens-health/
Second uterine biophysical ultrasound
I told the sonologist that my first biophysical uterine ultrasound was 16. I am on viagra + heparin. We are eyeing for a 19. He did my first uterine biophysical ultrasound in a government hospital. Haha, we are running after his schedule.
I laughed as I heard the doppler. It sounds like I am farting. After finishing the entire ultrasound, the sonologist told me that he feels my score will not reach 16. It was a torn hope. What shall I do? Should I schedule an immunologist appointment? Should I just ask my new obgyne? I patiently waited for 2 hours for the report. Wow! It was a 17. My myometrium blood flow was perfect! Thanks to Viagra! Wait... Why did not score a 19? Why my uterine artery pulsative index doppler failed? I asked the sonologist if his report was accurate. Because last time, my score for the uterine artery pulsative index doppler was perfect. He said he did the doppler twice already. Yep, i remember. Then, he assured me that 17-19 is in the same range. That means 77% chance of implantation. I was not happy with the 17. Perhaps, because my friend who failed the first doppler was able to achieve a 19 score on the second doppler. Perhaps, I was conditioned by the immunologist to aim for a 19.
What is uterine artery pulsative index? I did my seventh iui today. But, the new obgyne did not explain to me. She just left my room. Then, a fellow came to explain that I have good pulsative index, see it is greater than 3.0. I told her, it was contrary to the sonologist explanation in the morning. He said the pulsative index should be less than 3.0. She then explained that I have a good blood flow and the pulsative index is just a measure of resistance. Hmmm.... Google google.
I laughed as I heard the doppler. It sounds like I am farting. After finishing the entire ultrasound, the sonologist told me that he feels my score will not reach 16. It was a torn hope. What shall I do? Should I schedule an immunologist appointment? Should I just ask my new obgyne? I patiently waited for 2 hours for the report. Wow! It was a 17. My myometrium blood flow was perfect! Thanks to Viagra! Wait... Why did not score a 19? Why my uterine artery pulsative index doppler failed? I asked the sonologist if his report was accurate. Because last time, my score for the uterine artery pulsative index doppler was perfect. He said he did the doppler twice already. Yep, i remember. Then, he assured me that 17-19 is in the same range. That means 77% chance of implantation. I was not happy with the 17. Perhaps, because my friend who failed the first doppler was able to achieve a 19 score on the second doppler. Perhaps, I was conditioned by the immunologist to aim for a 19.
What is uterine artery pulsative index? I did my seventh iui today. But, the new obgyne did not explain to me. She just left my room. Then, a fellow came to explain that I have good pulsative index, see it is greater than 3.0. I told her, it was contrary to the sonologist explanation in the morning. He said the pulsative index should be less than 3.0. She then explained that I have a good blood flow and the pulsative index is just a measure of resistance. Hmmm.... Google google.
Of Pilgrimage, AS, pregnancy and cancer
I went to Putuoshan to pray. There are four 送子观音 songzi guanyin in the island.
In the first statue, I asked god for a baby. Then I suddenly remembered my friend, who had fetal rejection. I remembered her pelvic chain story. She had delivered premature babies. One died after two months of incubation. Oh my god, I prayed for "a" baby. I should say babies. Oops, one more thing the baby boy who died had ROP retinopathy of prematurity.
I prayed in the second statue that I want healthy babies - change "Y" to "I"+ "ES". Ooops, what if the baby is healthy but mentally retarded?
I prayed in the third statue that I want to have intelligent and healthy babies. What if, what if and what if my life will be in danger?
Finally, I prayed: Guanyin Pusha, I came here to ask/pray for babies, I surrender to your will. I just pray for smooth and uncomplicated pregnancy.
But I found on the web that AS is not scary after all. In contrast to my doctors advise. Of course, my doctors are speaking based on their experience. Maybe those remarks were exaggerated.
http://www.spondylitis.org/patient_resources/women.aspx
http://www.medicinenet.com/script/main/art.asp?articlekey=16694&page=2
http://www.arthritistoday.org/about-arthritis/arthritis-and-your-health/pregnancy/pregnancy-and-ankylosing-spondylitis.php
In the first statue, I asked god for a baby. Then I suddenly remembered my friend, who had fetal rejection. I remembered her pelvic chain story. She had delivered premature babies. One died after two months of incubation. Oh my god, I prayed for "a" baby. I should say babies. Oops, one more thing the baby boy who died had ROP retinopathy of prematurity.
I prayed in the second statue that I want healthy babies - change "Y" to "I"+ "ES". Ooops, what if the baby is healthy but mentally retarded?
I prayed in the third statue that I want to have intelligent and healthy babies. What if, what if and what if my life will be in danger?
Finally, I prayed: Guanyin Pusha, I came here to ask/pray for babies, I surrender to your will. I just pray for smooth and uncomplicated pregnancy.
But I found on the web that AS is not scary after all. In contrast to my doctors advise. Of course, my doctors are speaking based on their experience. Maybe those remarks were exaggerated.
http://www.spondylitis.org/patient_resources/women.aspx
http://www.medicinenet.com/script/main/art.asp?articlekey=16694&page=2
http://www.arthritistoday.org/about-arthritis/arthritis-and-your-health/pregnancy/pregnancy-and-ankylosing-spondylitis.php
Monday, November 24, 2014
of fate and destiny
What is the difference between fate and destiny? To me, destiny is a product of my conscious choice or decision. Fate is quite tricky. It has unexplained or uncontrollable attribute.
To me, fate is like tripping over a small stone. It is something like carelessness, accident or god's will that prevents me from achieving my goal. Is clumsiness a fate or destiny? Is having no offspring a fate or destiny? Should I be dictated by the prophecy? Is being childless my choice?
My mom told me to go to the temple and to exchange flower. I don't know exactly what tradition is it- buddhism or chinese? The scary part of it is I need god's permission. I need to toss a pair wooden half moon. A "yes" means- I should get either piece facing up side and down. A "no" means- two both wooden half moon facing down. A "no" means- I cannot take home the flower. Flower symbolizes kids. Granted if I have successful implantation on IVF, I may have spontaneous abortion along the way. Because, I did not have God's permission. Scary!
Question: should I be dictated by the wooden half moon tossing? I partly believe but I am quite hesitant to surrender to prophecy? Prophecy is not my cup of tea. My fate is a product of my conscious choice.
I am in the crossroad. YES- continue pregnancy treatment , NO- halt the pregnancy dream. I follow my heart first. I don't want to forgo my opportunity. I don't want to blame my wooden half moon tossing in the future. I will have IVF. I fully understand the risk. Now, I am ready to accept the challenge. I pray for no complication, no life threatening fetal resistance. I surrender to god.
Btw, why am I so negative? I am lucky that nowadays medicine and technology are so advanced. I am lucky because as of now we are still able to fund our fertility work up. Amen! I will try to get pregnant.
To me, fate is like tripping over a small stone. It is something like carelessness, accident or god's will that prevents me from achieving my goal. Is clumsiness a fate or destiny? Is having no offspring a fate or destiny? Should I be dictated by the prophecy? Is being childless my choice?
My mom told me to go to the temple and to exchange flower. I don't know exactly what tradition is it- buddhism or chinese? The scary part of it is I need god's permission. I need to toss a pair wooden half moon. A "yes" means- I should get either piece facing up side and down. A "no" means- two both wooden half moon facing down. A "no" means- I cannot take home the flower. Flower symbolizes kids. Granted if I have successful implantation on IVF, I may have spontaneous abortion along the way. Because, I did not have God's permission. Scary!
Question: should I be dictated by the wooden half moon tossing? I partly believe but I am quite hesitant to surrender to prophecy? Prophecy is not my cup of tea. My fate is a product of my conscious choice.
I am in the crossroad. YES- continue pregnancy treatment , NO- halt the pregnancy dream. I follow my heart first. I don't want to forgo my opportunity. I don't want to blame my wooden half moon tossing in the future. I will have IVF. I fully understand the risk. Now, I am ready to accept the challenge. I pray for no complication, no life threatening fetal resistance. I surrender to god.
Btw, why am I so negative? I am lucky that nowadays medicine and technology are so advanced. I am lucky because as of now we are still able to fund our fertility work up. Amen! I will try to get pregnant.
of immune suppressants and cancer
I have taken Methotrexate 12 years ago. I was lucky that my sacroiliitis activity had went into remission. It has been reported that Methotrexate causes cancer in small population. Scary as it sounds, Methotrexate is actually an anti-cancer drug for treatment of breast, skin and other types of cancers. Methotrexate is an immune suppressant. It induces adenosine which can inhibit tnf-a, interleukin gamma, etc... In the course of treatment, I had suffered drug induced hepatitis. What are the other side effects? Desperation drove me to try Methotrexate. I don't want to think too much. I prayed that Methotrexate would work for me. Thank god, it did.
Ten years ago Tnf-a inhibitors were in experimental phase. I believe it is now available in the market. TNF-a inhibitor is used for treatment of rheumatoid arthritis, ankylosing spondylitis and etc... This drug can cause cancer also. Oh my god, why is it in the market anyway? Same reason as the above. Same approach as the above. If ever needed, I just need to pray that this drug will work on me. How about Imuran- immune suppressant primarily used by kidney transplant patients? Same same!
I am not a cat with nine lives. Question: is it safe for me to get pregnant? My tnf-a:il-10 ratio is a bit above the border. And, delayed cytotoxic hypersensitivity reaction is quite real. I just afraid that my th1 will get out of control when exposed to foreign particles like toxoids and fetus.
Question: forgo the pregnancy dream or try to get pregnant? I have went this far. I guess I should give it a try. If I forgo the pregnancy dream, I may regret this in the future. If I try to get pregnant, I may also regret this in the future. Dumb I do, Dumb I don't.
http://www.webmd.com/rheumatoid-arthritis/news/20041116/rheumatoid-arthritis-drug-linked-to-cancer?page=2
http://www.drugs.com/methotrexate.html
Ten years ago Tnf-a inhibitors were in experimental phase. I believe it is now available in the market. TNF-a inhibitor is used for treatment of rheumatoid arthritis, ankylosing spondylitis and etc... This drug can cause cancer also. Oh my god, why is it in the market anyway? Same reason as the above. Same approach as the above. If ever needed, I just need to pray that this drug will work on me. How about Imuran- immune suppressant primarily used by kidney transplant patients? Same same!
I am not a cat with nine lives. Question: is it safe for me to get pregnant? My tnf-a:il-10 ratio is a bit above the border. And, delayed cytotoxic hypersensitivity reaction is quite real. I just afraid that my th1 will get out of control when exposed to foreign particles like toxoids and fetus.
Question: forgo the pregnancy dream or try to get pregnant? I have went this far. I guess I should give it a try. If I forgo the pregnancy dream, I may regret this in the future. If I try to get pregnant, I may also regret this in the future. Dumb I do, Dumb I don't.
http://www.webmd.com/rheumatoid-arthritis/news/20041116/rheumatoid-arthritis-drug-linked-to-cancer?page=2
http://www.drugs.com/methotrexate.html
Wednesday, November 19, 2014
autoimmune disease and cancer
I just realized today, I don't have butt pain anymore. Less than a week? I forgot the exact date. ^.^
I was warned when I get pregnant my immune system may flare. It may cause ankylosing spondylitis activity again. Immune suppressants may cause cancer. Another doctor told me,before, that I am at higher risk of developing cancer compared to the general population. There is a strong link between autoimmunity and cancer. Dumb I do, dumb I don't. I have family history of cancer. It seems to me that cancer is inevitable.
http://www.ingentaconnect.com/content/sp/or/1998/00000005/00000003/art00039
I was warned when I get pregnant my immune system may flare. It may cause ankylosing spondylitis activity again. Immune suppressants may cause cancer. Another doctor told me,before, that I am at higher risk of developing cancer compared to the general population. There is a strong link between autoimmunity and cancer. Dumb I do, dumb I don't. I have family history of cancer. It seems to me that cancer is inevitable.
http://www.ingentaconnect.com/content/sp/or/1998/00000005/00000003/art00039
Tuesday, November 18, 2014
New obgyne = new hope ?
I went to consult an ivf doctor today. She said I should have ivf as soon as possible. I am not getting any younger. Most people around forty years old have babies with genetic defects. But for now, I am in the middle of my menstrual cycle. December cycle is not feasible. Everyone is in vacation mode. Our target is January.
Taiwan or Philippines? Ai... I let go Taiwan for now. PGD pre implantation genetic diagnosis on HLA-b27 gene sounds illogical for me at this moment. I can't schedule a geneticist appointment up to now. Embryos with HLA-B27 gene will be discarded. What if I have a homozygous HLA-B27? I guess all my embryo will be discarded. Another point to consider is HLA-B27 allele or subtype. What is my subtype? Actually, I am just guessing my subtype maybe HLA-B*2704 or HLA-B*2705. Any other possibilities? Oh my god, should we play a guessing game here? I agree with my immunologist, no to PGD for now. HLA-b27 is just a marker, we need to know the sequence fragment.
I have letrozole this cycle, because I will test the uterine biophysical ultrasound. Plus, I will be taking Viagra and heparin. Would this be too wasteful for a natural cycle? My new obgyne said we will try iui next week.
What is CARMI? If it is used as adjective... carmic? This reminds me of karma, karmic. My karma is good or bad? New obgyne is a start of my new hope?
Taiwan or Philippines? Ai... I let go Taiwan for now. PGD pre implantation genetic diagnosis on HLA-b27 gene sounds illogical for me at this moment. I can't schedule a geneticist appointment up to now. Embryos with HLA-B27 gene will be discarded. What if I have a homozygous HLA-B27? I guess all my embryo will be discarded. Another point to consider is HLA-B27 allele or subtype. What is my subtype? Actually, I am just guessing my subtype maybe HLA-B*2704 or HLA-B*2705. Any other possibilities? Oh my god, should we play a guessing game here? I agree with my immunologist, no to PGD for now. HLA-b27 is just a marker, we need to know the sequence fragment.
I have letrozole this cycle, because I will test the uterine biophysical ultrasound. Plus, I will be taking Viagra and heparin. Would this be too wasteful for a natural cycle? My new obgyne said we will try iui next week.
What is CARMI? If it is used as adjective... carmic? This reminds me of karma, karmic. My karma is good or bad? New obgyne is a start of my new hope?
Sunday, November 16, 2014
Target score= 19
My first uterine biophysical ultrasound score is 16. This translates to 60% chance of conception. I was happy and contented with the 60%. My immunologist said it could have been better. He targets a score of 19%, that translates to 77% chance of conception.
I will be on heparin and viagra starting from day 6. We hope that my next uterine biophysical score hits 19. Whew! I salute him for being a perfectionist. After all, he promised 85% success rate for IVF. I almost forgot his promise. He was too serious about it. I almost forget to IvIg before egg collection, before embryo transfer and after positive pregnancy. Wow! Geee high maintenance cost.
Btw, why some friends (fellow patients) were not instructed to take viagra? To start with, my first uterine biophysical was higher compared to theirs. Oops, it seems like I need another debate with immunologist about the viagra issue. What is the side effect of viagra? Anyway, if it is headache, blirred vision only... I may as well try Viagra. My cousin, a cardiologist, never heard that Viagra is used for women.
Viagra for me, clomid for husband. It makes a perfect sense to me!
I will be on heparin and viagra starting from day 6. We hope that my next uterine biophysical score hits 19. Whew! I salute him for being a perfectionist. After all, he promised 85% success rate for IVF. I almost forgot his promise. He was too serious about it. I almost forget to IvIg before egg collection, before embryo transfer and after positive pregnancy. Wow! Geee high maintenance cost.
Btw, why some friends (fellow patients) were not instructed to take viagra? To start with, my first uterine biophysical was higher compared to theirs. Oops, it seems like I need another debate with immunologist about the viagra issue. What is the side effect of viagra? Anyway, if it is headache, blirred vision only... I may as well try Viagra. My cousin, a cardiologist, never heard that Viagra is used for women.
Viagra for me, clomid for husband. It makes a perfect sense to me!
Butt pain
Oh no! It strike back. I have been experiencing mild butt pain for about a week already. No medication for now. I hope it will subside on its own. Sacroiliitis? I hate eveything with suffix 'itis'.
Saturday, November 15, 2014
I got mycoplasma infection
I recently got mycoplasma pneumoniae infection. What was my symptoms? Hmmm... I got less than a week cough and colds. I thought that was because of late night sleep. Three or five days ago I have small mouth lesion. Immuno assay says IgM is positive, IgG is negative.
What are the symptoms of mycoplasma infection? Well, it attacks the mucous membrane. Lungs lining, mouth sore, sore throat and etc...? I am so amazed with immunology. Thanks to my overly suspicious immunologist, he did a great job! Yes, from now on let us use cannon ball to kill a mosquito!
I think this explains why I got pustules I had from the fifth LIT. Clarithomycin to the rescue. I love immunology.
What are the symptoms of mycoplasma infection? Well, it attacks the mucous membrane. Lungs lining, mouth sore, sore throat and etc...? I am so amazed with immunology. Thanks to my overly suspicious immunologist, he did a great job! Yes, from now on let us use cannon ball to kill a mosquito!
I think this explains why I got pustules I had from the fifth LIT. Clarithomycin to the rescue. I love immunology.
Wednesday, November 12, 2014
If karma theory were true...
I tried to re-assess the situation if I am over-reactive or she went too much. Granted it is true that she can read karma and do voodoo stuffs... I went to her clinic for medical advice and that karma/ aura or voodoo thing is unsolicited.
I just feel uttering those harsh words against a patient is not yet scientifically proven to cure any disease. If it is not scientifically proven then dont use it! Instead of consoling people with incurable disease, her harsh sacastic words can drag down autoimmune patient's self esteem. I just feel she is abusing her good karma.
I can't take such discrimination. Why is she so harsh on autoimmune patients? Why did she think the karm as the root cause for autoimmune disease? I am just curious whether infertility has any association or correlation with karma? If it has, infertile couples should be condemned and burned to ashes as well!
I can't take such discrimination. Why is she so harsh on autoimmune patients? Why did she think the karm as the root cause for autoimmune disease? I am just curious whether infertility has any association or correlation with karma? If it has, infertile couples should be condemned and burned to ashes as well!
Next time, I wish to send her a plaque:
Dr. xxx xxx
Obstetrician and Gynecology / Voodoo and Karmic reading
My monstrous obgyne
I cried I lot when My monstrous obgyne said: autoimmune diseases are karmic in nature! I should sue her for slander. Anyway, I dont want to waste my emotions and time for her unprofessional remarks.
My tears had cleared my vision. I will not let negative comments to affect my self-worth. Gee, why did I cry so much? I cried for two days already. Now, I am already dehydrated no more tears. Haha, I have recovered.
I just feel it was unjust. I have bad karma and she tried to drag me to the lowest tier of this society. Why is her perception of autoimmune patients so degrading? Ei, I look like a normal person. I dont have psoriasis. My eyes look normal. I have straight body (for now. ) What is wrong if my father is a killer? I went to her clinic for professional advice not to receive her defamation. What did I do wrong? I never asked for discount from her professional fee. I demand the reciprocity of respect that I have given to her. Now, I accept nothing is fair in this world. She is meant to me superior than me. Because she had good karma.
I don't know why I have cried so much. Shhhh... I haven't told anyone that I have donated to a lupus foundation. I feel somewhat like autoimmune society is where I belong. Maybe that made me to hate her remarks even more.
I am not ashamed of being label as autoimmune disease bad karmic person! I hate her to demeaning autoimmune patients. I feel I am a helpless victim of genetic defect. Whatever... Ok... I accept I am a victim of bad karma! I should suffer uveitis and ankylosing spondylitis for my entire life. I just hope she does not abuse her good karma!
I want to stay happy and optimistic. And I want to enjoy my every moments. My life is a time bomb after all. Ah... I should start working on my grandest dream. Shhh... I also never told anyone my grandest dream!
My tears had cleared my vision. I will not let negative comments to affect my self-worth. Gee, why did I cry so much? I cried for two days already. Now, I am already dehydrated no more tears. Haha, I have recovered.
I just feel it was unjust. I have bad karma and she tried to drag me to the lowest tier of this society. Why is her perception of autoimmune patients so degrading? Ei, I look like a normal person. I dont have psoriasis. My eyes look normal. I have straight body (for now. ) What is wrong if my father is a killer? I went to her clinic for professional advice not to receive her defamation. What did I do wrong? I never asked for discount from her professional fee. I demand the reciprocity of respect that I have given to her. Now, I accept nothing is fair in this world. She is meant to me superior than me. Because she had good karma.
I don't know why I have cried so much. Shhhh... I haven't told anyone that I have donated to a lupus foundation. I feel somewhat like autoimmune society is where I belong. Maybe that made me to hate her remarks even more.
I am not ashamed of being label as autoimmune disease bad karmic person! I hate her to demeaning autoimmune patients. I feel I am a helpless victim of genetic defect. Whatever... Ok... I accept I am a victim of bad karma! I should suffer uveitis and ankylosing spondylitis for my entire life. I just hope she does not abuse her good karma!
I want to stay happy and optimistic. And I want to enjoy my every moments. My life is a time bomb after all. Ah... I should start working on my grandest dream. Shhh... I also never told anyone my grandest dream!
Overcoming my autoimmune disease
Ankylosing spondylitis is an inflammatory disease that can cause vertebrae to fuse together. Once fused, it becomes permanently joined together. It is an autoimmune disorder wherein the immune system mistakenly attacks the patient own body parts like: joints, vetebrae, eyes (uveitis) and etc.
I had my first episode of uveitis (inflammation) of the eye when I was 24 years old. I was so curious what triggered the inflammation activity. Was it infection or allergy? I was not referred to a uveitis specialist at that time. That more than a month inflammation caused some of my eye muscles to fuse together.
How does uveitis feel? I feel cloudy vision. I was photophobic. Our eye muscle normal instinct is to make the aperture of the iris smaller when there is bright light. When it is dark our iris dilates. Whenever my iris moves (whether dilate or contract), it is terribly painful. Even if I cover my left eye, my left eye will move synchronous with the right iris. It is painful!
I forgot when was the first time I had lower back pain. I thought it was because of my improper posture. Sometime the pain was dull. Sometimes it was so intense. I thought I have torn my muscle.
One time I had a very lengthy conversation with a neurologist. He tried to associate uveitis to lower back pain. He recommended HLA-B27 screening and series of xrays. Oh no, I have HLA-B27, spondylosis, osteoarthritis ... Then he refered me to a rheumatologist.
I cried when I saw my HLA-B27 screening result. I cried that I will suffer, tendonitis, sacroiliitis, uveitis and other inflammation for the rest of my life. I felt I am an unless citizen. I belong to the handicapped society! Eventually, I learned to accept my fate and I tried my best to stay positive!
I had my first episode of uveitis (inflammation) of the eye when I was 24 years old. I was so curious what triggered the inflammation activity. Was it infection or allergy? I was not referred to a uveitis specialist at that time. That more than a month inflammation caused some of my eye muscles to fuse together.
How does uveitis feel? I feel cloudy vision. I was photophobic. Our eye muscle normal instinct is to make the aperture of the iris smaller when there is bright light. When it is dark our iris dilates. Whenever my iris moves (whether dilate or contract), it is terribly painful. Even if I cover my left eye, my left eye will move synchronous with the right iris. It is painful!
I forgot when was the first time I had lower back pain. I thought it was because of my improper posture. Sometime the pain was dull. Sometimes it was so intense. I thought I have torn my muscle.
One time I had a very lengthy conversation with a neurologist. He tried to associate uveitis to lower back pain. He recommended HLA-B27 screening and series of xrays. Oh no, I have HLA-B27, spondylosis, osteoarthritis ... Then he refered me to a rheumatologist.
I cried when I saw my HLA-B27 screening result. I cried that I will suffer, tendonitis, sacroiliitis, uveitis and other inflammation for the rest of my life. I felt I am an unless citizen. I belong to the handicapped society! Eventually, I learned to accept my fate and I tried my best to stay positive!
Tuesday, November 11, 2014
Ticking Time Bomb
My life is like a ticking time bomb. I keep myself busy. Otherwise, I will hear that annoying ticking sound. I don't know when my immune system is going to flare up again. I just stay happy and optimistic. I wish to enjoy every single moment of my life.
I was informed by the immunologist that pregnancy can trigger my ankylosing spondylitis activity again. Should I or should I not take the pregnancy risk? Immune suppressant may cause cancer. What if I have a double jeopardy- miscarriage + ankylosing spondylitis + cancer? What if my fear will not happen?
Should I just use optimism and gut feel on this matter? What if I regret of not trying IVF in the future?
Monday, November 10, 2014
Living with autoimmune disease
I never thought myself as a second class citizen. I live my life to the fullest. I am an optimistic and happy person. I have ankylosing spondylitis, luckily, it was in remission for 12 years. I remembered my rheumatologist explained to me before ankylosing spondylitis does not affect fertility. Not unless, my sacroiliitis prevents me to have sex.
Unfortunately, I received a blantant insult from my OBGYNE1 last week. She said she believe autoimmune disease is karmic in nature. She sarcasticly asked whether my clan are good guys? I laughed it off last week. I thought she was making a sarcastic joke. Today, she made the same remarks. To my disgust, I said why she feels it is karma? She replied she knows how to read karma. I cried for the whole day! I told my obgyne1 secretary that our clan work as humble trader earning a decent living in Divisoria. We are not killers, carnappers, swindlers and kidnappers. I exercised my maximum tolerance for my obgyne ya! I told the secretary that the doctor is really tactless. She should keep her karma theory to herself. Then, I cried again. I feel unjust. Even if I am a criminal , a prisoner- I have the right to medical attention. I deserve the reciprocity of respect that I have given to her. I never ask for discount in my bills.
My mom said enough crying. I have been crying all day long. My nose is red and has sores already. I said I can't help because of my genetic defect. She should help me pinpoint what is the cry-baby genes. ^.^
I begin to think of famous people with autoimmune disorder. Hmmm... So far I tried to name two only: former President Marcos and Luisa Conjuanco. Oops.... Will my obgyne make the same remarks as what she did to me? Perhaps not! I feel my doctor has no heart! If she dares to belittle me, she will not care for me. Good bye Obgyne! Grrr... I never thought that a physician utter such comment.
Unfortunately, I received a blantant insult from my OBGYNE1 last week. She said she believe autoimmune disease is karmic in nature. She sarcasticly asked whether my clan are good guys? I laughed it off last week. I thought she was making a sarcastic joke. Today, she made the same remarks. To my disgust, I said why she feels it is karma? She replied she knows how to read karma. I cried for the whole day! I told my obgyne1 secretary that our clan work as humble trader earning a decent living in Divisoria. We are not killers, carnappers, swindlers and kidnappers. I exercised my maximum tolerance for my obgyne ya! I told the secretary that the doctor is really tactless. She should keep her karma theory to herself. Then, I cried again. I feel unjust. Even if I am a criminal , a prisoner- I have the right to medical attention. I deserve the reciprocity of respect that I have given to her. I never ask for discount in my bills.
My mom said enough crying. I have been crying all day long. My nose is red and has sores already. I said I can't help because of my genetic defect. She should help me pinpoint what is the cry-baby genes. ^.^
I begin to think of famous people with autoimmune disorder. Hmmm... So far I tried to name two only: former President Marcos and Luisa Conjuanco. Oops.... Will my obgyne make the same remarks as what she did to me? Perhaps not! I feel my doctor has no heart! If she dares to belittle me, she will not care for me. Good bye Obgyne! Grrr... I never thought that a physician utter such comment.
Sunday, November 9, 2014
Trying to analyze HLA-B27 and PGD
What is HLA-B27? Oooh there are many subtypes of HLA-b alleles.
HLA-B*2704 , B*2705, B*2709 etc... Scandinavian countries has high incidence of uveitis. Equatorial counties has fever incidence. Wait, does this have something to do with the sun? Vit D deficiency?
HLA-B*2704 , B*2705, B*2709 etc... Scandinavian countries has high incidence of uveitis. Equatorial counties has fever incidence. Wait, does this have something to do with the sun? Vit D deficiency?
Nicholas J. Sheehan, Rheumatology 2010;49:621–631. Http://rheumatology.oxfordjournals.org
In Taiwan Chinese, susceptibility to AS is determined by homozygosity for HLA-B*2704, whereas B*2705 may confer protection [23].
It has been suggested that B*2709 arose in the Mediterranean region by a single mutation from B*2705 on a haplotype associated with low susceptibility for AS and that it is the haplotype that is more important for disease predisposition than the immunobiological differences between B*2705 and B*2709 [19].
It has been suggested that B*2709 arose in the Mediterranean region by a single mutation from B*2705 on a haplotype associated with low susceptibility for AS and that it is the haplotype that is more important for disease predisposition than the immunobiological differences between B*2705 and B*2709 [19].
In contrast with an early report [40], a recent Finnish study showed that HLA-B27 homozygosity is associated with a moderately increased risk of AS compared with B27 heterozygosity [41].
AS develops at an earlier age in patients who are HLA-B27+ than in those who are HLA-B27(negative)[42, 43]. In a Chinese population, the earliest age of onset of AS is associated with the HLA-B*2715 subtype [43].
Wait ya... The alleles are getting more diverse. Not all ankylosing spondylitis patients are HLA-B27 positive. I saw another article citing ankylosing sponylitis HLA-B27 negative father and son. HLA-B27 being the most popular, other genes may also be the culprit. My genetic study might be a waste of resources.
Genetics, to me, is getting complicated. Homozygous- means two genes are affected. While, heterozygous mean only one gene is affected. This reminds me of the Mendelian matrix again. Father x mother. During the fertilization, what is the chance that the embryo will get two HLA-B27 alleles from me? Am I homozygous or heterozygous HLA-B27 positive? What is the PGD standard operationg procedure? Discard all embryo with HLA-B27, even if that is heterozygous? Do I still need a geneticist consultation? This reminds me of my immunologist remarks: I am playing god. I said I am just embracing what technology has to offer. Ooops, few month ago, I wish to have PGD because my husband has genetic translocation. After the retest was done, it says normal chromosome. ai... PGD or not? Pray and trust God!
Actually, I dont want to make my decision. I dont want to be guilty in the future. I have to opportunity to have PGD done and but I turned it down. What if, It so happen that my child does not have ankylosing spondylitis but he has Down syndrome? Advanced age moms are at high risk of bearing aneuploidy offspring.
Wait ya... The alleles are getting more diverse. Not all ankylosing spondylitis patients are HLA-B27 positive. I saw another article citing ankylosing sponylitis HLA-B27 negative father and son. HLA-B27 being the most popular, other genes may also be the culprit. My genetic study might be a waste of resources.
Genetics, to me, is getting complicated. Homozygous- means two genes are affected. While, heterozygous mean only one gene is affected. This reminds me of the Mendelian matrix again. Father x mother. During the fertilization, what is the chance that the embryo will get two HLA-B27 alleles from me? Am I homozygous or heterozygous HLA-B27 positive? What is the PGD standard operationg procedure? Discard all embryo with HLA-B27, even if that is heterozygous? Do I still need a geneticist consultation? This reminds me of my immunologist remarks: I am playing god. I said I am just embracing what technology has to offer. Ooops, few month ago, I wish to have PGD because my husband has genetic translocation. After the retest was done, it says normal chromosome. ai... PGD or not? Pray and trust God!
Actually, I dont want to make my decision. I dont want to be guilty in the future. I have to opportunity to have PGD done and but I turned it down. What if, It so happen that my child does not have ankylosing spondylitis but he has Down syndrome? Advanced age moms are at high risk of bearing aneuploidy offspring.
My apical lung lesion ordeal
Who should I blame for the apical lesion scare? The radiologist or my immunologist who had amplified the findings?
A decade old letter from the rheumatologist says: she asked for xray baseline of my lungs because TNF-alpha and glucocorticoid may cause fibrosis. I went to visit my rheumatologist. Time travels so fast, unknowingly, 12 years has lapse since my last visit. This also means, that I am in remission. I asked her for her input on my xray films. She said x-ray film is clear. I said my immunologist said I have smoker's lungs and that lesion maybe a koch's lesion. I maybe put in immune suppresant. I need a pulmonary clearance from her. Was the scar caused by tnf-alpha or tuberculosis?
She said since I am in remission, it is not caused by TNF-alpha. It maybe caused by tuberculosis. Ok noted! I asked: Where is the lesion? Xray report says in the apical right lung. She replied, the radiologist is too good to see that small lesion. She feels it is clear. Ok noted again! Do I need to see a pulmonologist? She said the proper doctor to consult is an infectious disease doctor. So, he can rule out whether I had tuberculosis infection or not.
I then went to an infectious doctor. I told her I have an apical lung lesion, I suspect it is tuberculosis. What shall we do- what is tuberculin skin test? How do I know if the scar is new or old? Worst case scenario, if that were a Koch's lesion, what shall we do? I noticed she did not read my xray film. She just read the xray report. She suggested a tuberculin skin test. But, I will be going abroad I cannot come back after 48hours. I rescheduled the tubercullin skin test. I also told her I fear for a false positive. I told her I may have delayed cytotoxic hypersentivity reaction. She said it was meant to be that way.
Ring ring... Wow, I got a slot for consultation from by beloved immunologist. I tried my best to move him. I told him that I was bothered by his comment that I have smoker's lungs. And I am dying and yet he had not referred me to a pulmonologist. He laughed at my tuberculin skin test. What is the worst case scenario? He said he can put me on minimal immunosuppression + IvIg.
The pulmonologist said my xray is clear. I said the chest PA is clear but he needs to read the apico lordotic view. He laughed out loud and said it was clear. I showed him the xray report. He said my lungs are clear. No smoker's lungs also.
Bad immunologist! Same old comment: he is trying to kill a mosquito with a cannon ball. ^.^
I see this scenario as somebody sharing rumor about my trusted cashier in our store. When I secretly get feedback from her colleagues, I found out majority of the people can attest that the cashier is honest. But a selected few loyal staff will say otherwise. I am not zeroing out the possibility. I still trust to some extent. Deep in my heart, I believe the possibility that my immunologist theory is true. I close this issue for now.
A decade old letter from the rheumatologist says: she asked for xray baseline of my lungs because TNF-alpha and glucocorticoid may cause fibrosis. I went to visit my rheumatologist. Time travels so fast, unknowingly, 12 years has lapse since my last visit. This also means, that I am in remission. I asked her for her input on my xray films. She said x-ray film is clear. I said my immunologist said I have smoker's lungs and that lesion maybe a koch's lesion. I maybe put in immune suppresant. I need a pulmonary clearance from her. Was the scar caused by tnf-alpha or tuberculosis?
She said since I am in remission, it is not caused by TNF-alpha. It maybe caused by tuberculosis. Ok noted! I asked: Where is the lesion? Xray report says in the apical right lung. She replied, the radiologist is too good to see that small lesion. She feels it is clear. Ok noted again! Do I need to see a pulmonologist? She said the proper doctor to consult is an infectious disease doctor. So, he can rule out whether I had tuberculosis infection or not.
I then went to an infectious doctor. I told her I have an apical lung lesion, I suspect it is tuberculosis. What shall we do- what is tuberculin skin test? How do I know if the scar is new or old? Worst case scenario, if that were a Koch's lesion, what shall we do? I noticed she did not read my xray film. She just read the xray report. She suggested a tuberculin skin test. But, I will be going abroad I cannot come back after 48hours. I rescheduled the tubercullin skin test. I also told her I fear for a false positive. I told her I may have delayed cytotoxic hypersentivity reaction. She said it was meant to be that way.
Ring ring... Wow, I got a slot for consultation from by beloved immunologist. I tried my best to move him. I told him that I was bothered by his comment that I have smoker's lungs. And I am dying and yet he had not referred me to a pulmonologist. He laughed at my tuberculin skin test. What is the worst case scenario? He said he can put me on minimal immunosuppression + IvIg.
The pulmonologist said my xray is clear. I said the chest PA is clear but he needs to read the apico lordotic view. He laughed out loud and said it was clear. I showed him the xray report. He said my lungs are clear. No smoker's lungs also.
Bad immunologist! Same old comment: he is trying to kill a mosquito with a cannon ball. ^.^
I see this scenario as somebody sharing rumor about my trusted cashier in our store. When I secretly get feedback from her colleagues, I found out majority of the people can attest that the cashier is honest. But a selected few loyal staff will say otherwise. I am not zeroing out the possibility. I still trust to some extent. Deep in my heart, I believe the possibility that my immunologist theory is true. I close this issue for now.
Saturday, November 1, 2014
No more Preimplantation genetic diagnosis
We have different belief with my obgyne and immunologist. What shall we do with the abnormal embryo? My answer is quite simple: discard the abnormal embryo!
My immunologist said I will not exist in this world if my parents did a preimplantation genetic diagnosis on me. I said I am not playing Hitler or God. I just want to embrace science. He held my hands then I cried. I said I don't want a child with juenivile arthritis. His words reverberated til this morning.
Btw, what is the mechanism of the inflammation- how does HLA-B27 promote inflamation? If I look the other side of the coin, seronagativity to HLA-B27 does not mean you will not have ankylosing spondylitis. Seropositivity to HLA-B27 does not necessarily mean a person will have spondyloarthropathy. I need to consider recessive and dominant trait also. Grrr... What is HLA-B27, a dominant or recessive allele? This reminds me of the Mendelian Matrix from high school biology. I somewhat understand his point. I am trying to digest its meaning.
I just detected an inflammatory marker-- HLA-B27 , the allele. I never did the genome sequence in the past. I need to know the gene sequence to probe in my embryos. I guess this is a polymerase chain reaction.
He said I begin to think with the same wavelength. As of this moment, I feel I don't want to do PGD yet. I maybe throwing away life. Ai... Need to reconsider this.
If the belief of doctors here in Philippines that life starts at embryo stage, I guess I will not be able to schedule a geneticist appointment. I told her secretary I want to do PGD in Taiwan. By the way, PGD is banned in the Philippines.
My immunologist said I will not exist in this world if my parents did a preimplantation genetic diagnosis on me. I said I am not playing Hitler or God. I just want to embrace science. He held my hands then I cried. I said I don't want a child with juenivile arthritis. His words reverberated til this morning.
Btw, what is the mechanism of the inflammation- how does HLA-B27 promote inflamation? If I look the other side of the coin, seronagativity to HLA-B27 does not mean you will not have ankylosing spondylitis. Seropositivity to HLA-B27 does not necessarily mean a person will have spondyloarthropathy. I need to consider recessive and dominant trait also. Grrr... What is HLA-B27, a dominant or recessive allele? This reminds me of the Mendelian Matrix from high school biology. I somewhat understand his point. I am trying to digest its meaning.
I just detected an inflammatory marker-- HLA-B27 , the allele. I never did the genome sequence in the past. I need to know the gene sequence to probe in my embryos. I guess this is a polymerase chain reaction.
He said I begin to think with the same wavelength. As of this moment, I feel I don't want to do PGD yet. I maybe throwing away life. Ai... Need to reconsider this.
If the belief of doctors here in Philippines that life starts at embryo stage, I guess I will not be able to schedule a geneticist appointment. I told her secretary I want to do PGD in Taiwan. By the way, PGD is banned in the Philippines.
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