Friday, June 11, 2010
WHO WOULD YOU CALL?
I recently talked to someone that I have known since I was in my early 20's. In one of our conversations he mentioned that he had heard from someone from his past because she had cancer and that she wanted to get in touch with the people she really appreciated from her past. That started me to thinking: . Who would you call or try to contact if you had a life altering event? In my case, I have had strokes and it has made me very aware of how much I appreciate my life and the people in it. It has also enabled me to have the strength to "detox" my life, as it were. To get rid of any baggage or dramatic people that are not a positive influence on my life and the lives of my sons. So I am asking you? WHO WOULD YOU CALL AND WHY?
Tuesday, June 1, 2010
Sunday, May 30, 2010
Helpful Links
I have found these links quite helpful. I have been reading a lot since being diagnosed with APS.
http://www.apsfa.org/ Antiphospholipid Information
http://www.lovenox.com/consumer/prescribed-lovenox/default.aspx Lovenox
http://www.coumadin.com/ Coumadin
http://strokessuck.com/ They really do!
http://www.americanheart.org/ This website is great for learning about stroke warning signs.
http://www.facebook.com/melanie.chadwell Add me on facebook
http://www.apsfa.org/ Antiphospholipid Information
http://www.lovenox.com/consumer/prescribed-lovenox/default.aspx Lovenox
http://www.coumadin.com/ Coumadin
http://strokessuck.com/ They really do!
http://www.americanheart.org/ This website is great for learning about stroke warning signs.
http://www.facebook.com/melanie.chadwell Add me on facebook
Thursday, May 27, 2010
Surviving multiple strokes
You know, my friend was telling me the other night that it is nothing short of a miracle that I am here and that I need to share my story. To be honest, I had never really thought of it that way until then. Then I started thinking about the 2 patients that died in the hospital from a stroke (2 different hospital stays) and just how blessed and lucky I really am. I am blessed that I have the right side of my face back as well as my right arm and hand. I was lucky enough to regain those in the hospital and did not need physical therapy. I do have some slight drooping on the right side of my mouth but or course I am among the very few who notices it, along with the doctors and my sons.
The very reason that I am here on this site is to help those who are not as blessed/lucky as I am. Having decreased blood flow to your brain makes things very difficult to sort out and organize things that you need to do to arrange your care, your bills, your every day life. I am sure that that is where some of the depression and anger come into play. I have no guarantees that I will not have another stroke but I do know that as long as I am here and coherent, I will do whatever I can to get the word out about strokes, blood disorders, auto immune diseases.
Thank you for listening and know I am here to help or just chat.
The very reason that I am here on this site is to help those who are not as blessed/lucky as I am. Having decreased blood flow to your brain makes things very difficult to sort out and organize things that you need to do to arrange your care, your bills, your every day life. I am sure that that is where some of the depression and anger come into play. I have no guarantees that I will not have another stroke but I do know that as long as I am here and coherent, I will do whatever I can to get the word out about strokes, blood disorders, auto immune diseases.
Thank you for listening and know I am here to help or just chat.
June 9th is World APS day.
June 9, 2010 is World APS Day. We'd like to bring more attention & awareness to this "rare" autoimmune disease. So we are asking you to help spread awareness and to wear your APS Gear or burgundy on this day.
For more information please go to http://www.apsfa.org/.
For more information please go to http://www.apsfa.org/.
Wednesday, May 26, 2010
Psychological changes
Feelings of anger, despair, frustration and grief are all normal for people who have had a stroke. Worries about work, money, close relationships and loss of confidence can lead to anxiety and depression. The tiredness that usually follows a stroke can also make depression worse.
I was very surprised at how "down" I felt and still feel at times. People think that since you are out of the hospital and back on your feet, so to speak, that everything is the same and it's not. You look the same on the outside so everything is fine right? Sadly that is not the case in most stroke patients.
I am fortunate to have some very loving and understanding people in my life.
Those around me know that there are things, events and people that I just don't remember, or have a vague memory of. I guess that is where the anger and frustration come into play. It makes you feel like you are broken. My sons have seen the changes in me as well as some very close friends and family members. They are really helpful in helping me with every day life. I have to admit that I hide some of my feelings from those around me, it is difficult to deal with these feelings when you don't really know where they came from. I have changed and I accept these changes and embrace them. Thankfully, I did not lose my sense of humor or spirit.
I do get angry with the situation but I have never thought "why me" because if it weren't ME it would be someone else and I would not wish this on anyone. I do miss ME sometimes, the old ME but these are the cards I have been dealt and I know in my heart that I am supposed to be here to help anyone who needs me.
Can you believe I have actually had people get offended when I did not remember them, or recall certain things about them? Ha! It certainly isn't personal. I don't pick and choose who or what I forgot. I actually had to call my friend twice for directions to his house. (hey it's funny now). Thank God he didn't get offended! I am striving to be the best 'Melanie' I can be.
I was very surprised at how "down" I felt and still feel at times. People think that since you are out of the hospital and back on your feet, so to speak, that everything is the same and it's not. You look the same on the outside so everything is fine right? Sadly that is not the case in most stroke patients.
I am fortunate to have some very loving and understanding people in my life.
Those around me know that there are things, events and people that I just don't remember, or have a vague memory of. I guess that is where the anger and frustration come into play. It makes you feel like you are broken. My sons have seen the changes in me as well as some very close friends and family members. They are really helpful in helping me with every day life. I have to admit that I hide some of my feelings from those around me, it is difficult to deal with these feelings when you don't really know where they came from. I have changed and I accept these changes and embrace them. Thankfully, I did not lose my sense of humor or spirit.
I do get angry with the situation but I have never thought "why me" because if it weren't ME it would be someone else and I would not wish this on anyone. I do miss ME sometimes, the old ME but these are the cards I have been dealt and I know in my heart that I am supposed to be here to help anyone who needs me.
Can you believe I have actually had people get offended when I did not remember them, or recall certain things about them? Ha! It certainly isn't personal. I don't pick and choose who or what I forgot. I actually had to call my friend twice for directions to his house. (hey it's funny now). Thank God he didn't get offended! I am striving to be the best 'Melanie' I can be.
Lovenox, blood thinners, Comaudin
You have to be very careful when you are on blood thinners. Being on blood thinners makes you a high risk for internal bleeding if you have an accident or are injured. Be careful if and when you bump your head or fall. It is a good idea to have a medical alert bracelet that states you have a hypercoaguable state and that you are on anticoagulants. (Paramedics and sometimes doctors don't recognize what APS is. If you say you have a hypercoaguable state, they WILL recognize this. Think about the nature of an emergency you may have.
In the event of a stroke or heart attack you may not be able to speak and your bracelet can do the speaking for you. Bleeding out is a very real risk if you are in an emergency situation. Your doctor will suggest to you that you do not engage in any contact sports. You are much more prone to bruising, I noticed that especially when I was on Comaudin. Please note that you need to get your INR numbers checked regularly while on Comaudin. You do not need to get INR numbers checked with Lovenox.
In the event of a stroke or heart attack you may not be able to speak and your bracelet can do the speaking for you. Bleeding out is a very real risk if you are in an emergency situation. Your doctor will suggest to you that you do not engage in any contact sports. You are much more prone to bruising, I noticed that especially when I was on Comaudin. Please note that you need to get your INR numbers checked regularly while on Comaudin. You do not need to get INR numbers checked with Lovenox.
Treating APS
How is antiphospholipid syndrome treated?
The treatment of patients with anticardiolipin syndrome has substantially evolved since they were discovered to be clinically important in the mid-1980s. Each manifestation of the antiphospholipid syndrome, and each individual patient with the condition, is treated uniquely.
Because many of the features of illness with anticardiolipin syndrome are associated with an abnormal grouping of normal blood clotting elements (platelets), treatment is often directed toward preventing clotting by thinning the blood. Patients with this disorder have an abnormal tendency to form blood clots (thrombosis). The abnormal blood clotting can affect the function of virtually any organ. Medications that thin (anticoagulate) the blood, such as heparin (Hep-Lock, Liquaemin) and warfarin (Coumadin) (powerful blood thinners), are used for treatment. Aspirin has an affect on platelets that inhibits their grouping (aggregation) and has also been used in low doses to thin the blood of selected patients. Cortisone-related medications, such as prednisone, have been used to suppress the immune activity and inflammation in patients with certain features of the condition. For patients with systemic lupus erythematosus who also have antiphospholipid syndrome, hydroxychloroquine (Plaquenil) has been reported to add some protection against blood clotting.
The treatment of patients with anticardiolipin syndrome has substantially evolved since they were discovered to be clinically important in the mid-1980s. Each manifestation of the antiphospholipid syndrome, and each individual patient with the condition, is treated uniquely.
Because many of the features of illness with anticardiolipin syndrome are associated with an abnormal grouping of normal blood clotting elements (platelets), treatment is often directed toward preventing clotting by thinning the blood. Patients with this disorder have an abnormal tendency to form blood clots (thrombosis). The abnormal blood clotting can affect the function of virtually any organ. Medications that thin (anticoagulate) the blood, such as heparin (Hep-Lock, Liquaemin) and warfarin (Coumadin) (powerful blood thinners), are used for treatment. Aspirin has an affect on platelets that inhibits their grouping (aggregation) and has also been used in low doses to thin the blood of selected patients. Cortisone-related medications, such as prednisone, have been used to suppress the immune activity and inflammation in patients with certain features of the condition. For patients with systemic lupus erythematosus who also have antiphospholipid syndrome, hydroxychloroquine (Plaquenil) has been reported to add some protection against blood clotting.
Cause of APS
What causes antiphospholipid syndrome?
The cause of antiphospholipid syndrome is not completely known. Antiphospholipid antibodies reduce the levels of annexin V, a protein that binds phospholipids and has potent clot-blocking (anticoagulant) activity. The reduction of annexin V levels is thought to be a possible mechanism underlying the increased tendency of blood to clot and the propensity to pregnancy loss characteristic of the antiphospholipid syndrome.
Antiphospholipid antibodies, such as anticardiolipin, have also been associated with decreased levels of prostacyclin, a chemical that prevents the clumping together of normal blood clotting elements called platelets.
The cause of antiphospholipid syndrome is not completely known. Antiphospholipid antibodies reduce the levels of annexin V, a protein that binds phospholipids and has potent clot-blocking (anticoagulant) activity. The reduction of annexin V levels is thought to be a possible mechanism underlying the increased tendency of blood to clot and the propensity to pregnancy loss characteristic of the antiphospholipid syndrome.
Antiphospholipid antibodies, such as anticardiolipin, have also been associated with decreased levels of prostacyclin, a chemical that prevents the clumping together of normal blood clotting elements called platelets.
My name is Melanie and I have recently been diagnosed with Antiphospholipid Syndrome. Please understand that this blog is solely for sharing my experience in hopes of spreading awareness and gaining knowledge about this disease, this is not medical advice. I am 47 years young and I have had 4 strokes as well as spleen infarct since November of 2009. I have experienced memory loss, confusion, frustration, severe head aches, depression, temporary blindness in one eye as well as other symptoms. It has been extremely difficult to find information about APS. In the hospital I was in the doctors and nurses told me that this is the first case they had ever seen. We were learning together.
After being diagnosed, I was put on Comaudin. My INR numbers set at 2.0 to 3.0. I continued on to have 3 more strokes while on Comaudin. The doctors and the Comaudin clinic even increased my INR range to 4.0 but that was not successful. I was placed on Lovenox injections after each hospital stay along with Comaudin and still had strokes. As soon as I stopped the Lovenox injections I would have another 'episode'. My last hospital stay was in April of 2010. It was in that hospital stay that my hemotologist deemed my case a 'Comaudin failure'. I now give myself 2 injections a day of Lovenox, 100 mg each. That is a high dose but with my history my doctor thinks that this is the only way to keep me from clotting and having another stroke.
It is my hope, in writing this blog to help others to find the resources that are available to them but who might have a hard time in finding them (I know I did)! I am in constant contact with my insurance company, my hemotologist and the pharmacy. I still cut through red tape but it is ok, I have been dealt these cards and I can and will handle it with grace.
Giving yourself injections might make some squeemish, but when you are faced with either giving yourself injections or stroking out, the decision is an easy one to make. I have "marbling" and bruising at the injection sites but I have found that applying ice packs to the site or the bruising is a tremendous help. I do try to avoid injecting into the waistline or where you know your clothes might press on the injection site. I tend to keep the injections in the fatty tissue areas, stomach, upper thighs (if your stomach needs a break).
While this disease is treatable, it is considered a life threatening diesase and is for life. I have done some searching online about APS and I will be posting as I find out more information. Please feel free to share your story with me and let me know if I can help in any way possible, if only to listen!
Melanie
What is antiphospholipid syndrome?
The antiphospholipid syndrome is a disorder of the immune system that is characterized by excessive clotting of blood and/or certain complications of pregnancy (premature miscarriages, unexplained fetal death, or premature birth) and the presence of antiphospholipid antibodies (cardiolipin or lupus anticoagulant antibodies) in the blood. Patients with antiphospholipid syndrome have developed abnormal symptoms while having antiphospholipid antibodies that are detectable with blood testing.
Antiphospholipid syndrome is also called phospholipid antibody syndrome. Antiphospholipid syndrome has been referred to as Hughes syndrome in honor of the doctor who first described it.
After being diagnosed, I was put on Comaudin. My INR numbers set at 2.0 to 3.0. I continued on to have 3 more strokes while on Comaudin. The doctors and the Comaudin clinic even increased my INR range to 4.0 but that was not successful. I was placed on Lovenox injections after each hospital stay along with Comaudin and still had strokes. As soon as I stopped the Lovenox injections I would have another 'episode'. My last hospital stay was in April of 2010. It was in that hospital stay that my hemotologist deemed my case a 'Comaudin failure'. I now give myself 2 injections a day of Lovenox, 100 mg each. That is a high dose but with my history my doctor thinks that this is the only way to keep me from clotting and having another stroke.
It is my hope, in writing this blog to help others to find the resources that are available to them but who might have a hard time in finding them (I know I did)! I am in constant contact with my insurance company, my hemotologist and the pharmacy. I still cut through red tape but it is ok, I have been dealt these cards and I can and will handle it with grace.
Giving yourself injections might make some squeemish, but when you are faced with either giving yourself injections or stroking out, the decision is an easy one to make. I have "marbling" and bruising at the injection sites but I have found that applying ice packs to the site or the bruising is a tremendous help. I do try to avoid injecting into the waistline or where you know your clothes might press on the injection site. I tend to keep the injections in the fatty tissue areas, stomach, upper thighs (if your stomach needs a break).
While this disease is treatable, it is considered a life threatening diesase and is for life. I have done some searching online about APS and I will be posting as I find out more information. Please feel free to share your story with me and let me know if I can help in any way possible, if only to listen!
Melanie
What is antiphospholipid syndrome?
The antiphospholipid syndrome is a disorder of the immune system that is characterized by excessive clotting of blood and/or certain complications of pregnancy (premature miscarriages, unexplained fetal death, or premature birth) and the presence of antiphospholipid antibodies (cardiolipin or lupus anticoagulant antibodies) in the blood. Patients with antiphospholipid syndrome have developed abnormal symptoms while having antiphospholipid antibodies that are detectable with blood testing.
Antiphospholipid syndrome is also called phospholipid antibody syndrome. Antiphospholipid syndrome has been referred to as Hughes syndrome in honor of the doctor who first described it.
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