This is going to be a short and sweet post.
I went to the rheumatologist today and I don't actually have Lupus. Yes, one of the lab tests my PCP did contained a positive result for a test that is used in Lupus detection, but it is not a full diagnostic test. Other people that do not have Lupus can have positive results on this test also. The rheumatologist is re-doing the labs just to make sure that nothing else is up, but he doesn't think there is anything. I will also see him again in 3 months to review and make sure everything is still good after the hysterectomy etc. He does not foresee any problems, jut being cautious.
Good News, but what an emotional roller coaster over the last few weeks!!!
Tuesday, October 28, 2014
Sunday, October 26, 2014
10-26-14 Update
Time for an update.....
I'm fighting a cold and using this as an excuse to sit down and not wash the last few dishes or fold the load of laundry waiting in the dryer. Communication is more important than dishes, right?
Let's start with Ericka. The Merida costume that I told you about last week ended up being quite a bit more difficult than I anticipated. Ericka started, but soon the fabric was giving her problems. I took over, with her blessing, and finished it for her. She wore it yesterday at Northwest Trek's Hoot and Howl. I was not home to get her ready so I don't have a picture on my normal camera. She sent me one via text and if I can figure out how to put it on here I will. She looked great. She died her hair and with her natural curls and the dress she made a great Merida. She got lots of complements.
Marty was doing fine after his surgery until this morning. He had not have any pain until early this morning. He called the doctor and the doctor said this was normal and to take some of the hydrocodone that was prescribed. He has taken two today and slept A LOT. It is to bad that the doctor did not let us know that this was a possibility ahead of time. It would not have changed anything, it just would have been nice to know and not worry this morning. Luckily it didn't happen yesterday. Marty was the one to take Ericka to Hoot and Howl. He had a lot of fun also. He dressed up and if I can figure out how to post the picture of Ericka, I will post a picture of Marty also.
Marissa has been on a downward spiral this past month. Her headache has been worse, her stomach upset, very tired and experiencing balancing problems and dizziness. We did not know if this was the worse before better stuff that Lyme patients go through or not. Marissa had an appointment with her Lyme doctor on Thursday. He determined that the worsening symptoms were due to one of her medications congregating around her nerves. He has taken her off that medication, but it is a fat soluble drug that has a half-live of 21 days. Therefore it will take a month or two to get most of it out of her system and her to feel better.
I want to take a moment and say thank you to a number of people who have really helped Marissa out the last few weeks. She has been very lonely and depressed lately, partially due to medications, partially due to the situation she is in. The depression was pretty bad a couple of weeks ago and she reached out to some friends for some help. Mostly she just needs some contact with people her own age, and the knowledge that she is not forgotten. A number of people responded and I want to say thank to you Katie Z, Zoe C, Brooke H, Sarah Z, Sidney R. and Brianna S. for reaching out and taking a few moments out of your busy days to text and Marissa and include her. It really helps a lot!
I also want to say thank you to her Color Guard coach who sent a message to me that I then read to Marissa that allowed Marissa to realize that even though she was not able to perform with the guard she was not hated and everyone understood her situation. She invited Marissa do join the band at the Everett competition yesterday and participate in what she could. Marissa made it through part of the day before I had to bring her home. I want to extend the thanks to the entire color guard who were happy to see Marissa and made her feel wanted even though she could not participate. Marissa has felt terrible not being able to be part of the team and has felt that she has let her team down, so this really helped.
Now on to me.... The diagnoses of Lupus threw me for a couple of days. I was pretty upset, but now I'm doing fine. My doctor went over the lab results with me and we caught it so early that it almost doesn't even count as Lupus. Kind of a pre-Lupus thing. I have my first appt with the rheumatologist on Tuesday, so I will know more then. The biggest thing right now is that I get to have a hysterectomy soon. The ultrasound I had a few weeks ago, showed that my uterus is twice the size of normal and that I have a walnut sized fibroid. They couldn't even find my ovaries because of the size of the uterus, so we don't know their status. My appt with the gynecologist is November 4th. Hopefully I can schedule the surgery soon after that so I can be mostly recovered before the Christmas season starts. I'll let you know once I get it scheduled.
My family, both immediate and extended has been very understanding and wanting to make the annual Thanksgiving gathering that happens at my house easier for me and Marissa this year. After coming up with many options I talked to Marty and the girls and they want to go ahead as normal. They said even if I was stuck on the couch and able to do nothing they would take over and do everything. I am a lucky wife and mom. I know that they mean it and that they are capable of doing it. Having things as close to normal is good for Marissa also. She doesn't like it when her illness interferes with family activities and traditions.
Ok, I suppose I should go back tot he dishes and laundry now.
I'm fighting a cold and using this as an excuse to sit down and not wash the last few dishes or fold the load of laundry waiting in the dryer. Communication is more important than dishes, right?
Let's start with Ericka. The Merida costume that I told you about last week ended up being quite a bit more difficult than I anticipated. Ericka started, but soon the fabric was giving her problems. I took over, with her blessing, and finished it for her. She wore it yesterday at Northwest Trek's Hoot and Howl. I was not home to get her ready so I don't have a picture on my normal camera. She sent me one via text and if I can figure out how to put it on here I will. She looked great. She died her hair and with her natural curls and the dress she made a great Merida. She got lots of complements.
Marty was doing fine after his surgery until this morning. He had not have any pain until early this morning. He called the doctor and the doctor said this was normal and to take some of the hydrocodone that was prescribed. He has taken two today and slept A LOT. It is to bad that the doctor did not let us know that this was a possibility ahead of time. It would not have changed anything, it just would have been nice to know and not worry this morning. Luckily it didn't happen yesterday. Marty was the one to take Ericka to Hoot and Howl. He had a lot of fun also. He dressed up and if I can figure out how to post the picture of Ericka, I will post a picture of Marty also.
Marissa has been on a downward spiral this past month. Her headache has been worse, her stomach upset, very tired and experiencing balancing problems and dizziness. We did not know if this was the worse before better stuff that Lyme patients go through or not. Marissa had an appointment with her Lyme doctor on Thursday. He determined that the worsening symptoms were due to one of her medications congregating around her nerves. He has taken her off that medication, but it is a fat soluble drug that has a half-live of 21 days. Therefore it will take a month or two to get most of it out of her system and her to feel better.
I want to take a moment and say thank you to a number of people who have really helped Marissa out the last few weeks. She has been very lonely and depressed lately, partially due to medications, partially due to the situation she is in. The depression was pretty bad a couple of weeks ago and she reached out to some friends for some help. Mostly she just needs some contact with people her own age, and the knowledge that she is not forgotten. A number of people responded and I want to say thank to you Katie Z, Zoe C, Brooke H, Sarah Z, Sidney R. and Brianna S. for reaching out and taking a few moments out of your busy days to text and Marissa and include her. It really helps a lot!
I also want to say thank you to her Color Guard coach who sent a message to me that I then read to Marissa that allowed Marissa to realize that even though she was not able to perform with the guard she was not hated and everyone understood her situation. She invited Marissa do join the band at the Everett competition yesterday and participate in what she could. Marissa made it through part of the day before I had to bring her home. I want to extend the thanks to the entire color guard who were happy to see Marissa and made her feel wanted even though she could not participate. Marissa has felt terrible not being able to be part of the team and has felt that she has let her team down, so this really helped.
Now on to me.... The diagnoses of Lupus threw me for a couple of days. I was pretty upset, but now I'm doing fine. My doctor went over the lab results with me and we caught it so early that it almost doesn't even count as Lupus. Kind of a pre-Lupus thing. I have my first appt with the rheumatologist on Tuesday, so I will know more then. The biggest thing right now is that I get to have a hysterectomy soon. The ultrasound I had a few weeks ago, showed that my uterus is twice the size of normal and that I have a walnut sized fibroid. They couldn't even find my ovaries because of the size of the uterus, so we don't know their status. My appt with the gynecologist is November 4th. Hopefully I can schedule the surgery soon after that so I can be mostly recovered before the Christmas season starts. I'll let you know once I get it scheduled.
My family, both immediate and extended has been very understanding and wanting to make the annual Thanksgiving gathering that happens at my house easier for me and Marissa this year. After coming up with many options I talked to Marty and the girls and they want to go ahead as normal. They said even if I was stuck on the couch and able to do nothing they would take over and do everything. I am a lucky wife and mom. I know that they mean it and that they are capable of doing it. Having things as close to normal is good for Marissa also. She doesn't like it when her illness interferes with family activities and traditions.
Ok, I suppose I should go back tot he dishes and laundry now.
Friday, October 17, 2014
Marty and Ericka's Turn
The last couple of posts have been mostly about Marissa and myself. This time Marty and Ericka get the spotlight.
Today Marty, my husband, had a 10mm kidney stone blasted. He had a kidney stone try to escape on its own a couple of years ago so he gets regular checkups at the urologist. At his check a couple weeks ago it was determined that one of the stones in the kidney had grown and would cause major issues if it was to release and try and pass on its own. Therefore Marty went in to the hospital today for outpatient surgery. They put him under and then used shock waves to break up the kidney stone while still in the kidney. The surgery went fine and he is home resting. He is in some pain, but should be fine within a couple of days.
We have a pretty quiet weekend planned. Ericka and I are working on sewing a Halloween costume for her. She is going to be Merida from Brave. We have most of the pieces for the dress cut out and she started sewing tonight. It is a pretty detailed dress and Ericka should learn a lot during this process. It needs to be done by next Saturday so she can wear it to Northwest Trek for Hoot and Howl. So most of the weekend we will be working on the dress. When we get it done I will post a picture.
Today Marty, my husband, had a 10mm kidney stone blasted. He had a kidney stone try to escape on its own a couple of years ago so he gets regular checkups at the urologist. At his check a couple weeks ago it was determined that one of the stones in the kidney had grown and would cause major issues if it was to release and try and pass on its own. Therefore Marty went in to the hospital today for outpatient surgery. They put him under and then used shock waves to break up the kidney stone while still in the kidney. The surgery went fine and he is home resting. He is in some pain, but should be fine within a couple of days.
We have a pretty quiet weekend planned. Ericka and I are working on sewing a Halloween costume for her. She is going to be Merida from Brave. We have most of the pieces for the dress cut out and she started sewing tonight. It is a pretty detailed dress and Ericka should learn a lot during this process. It needs to be done by next Saturday so she can wear it to Northwest Trek for Hoot and Howl. So most of the weekend we will be working on the dress. When we get it done I will post a picture.
Saturday, October 4, 2014
October Update
Wow, I knew it had been quite a while since I wrote my first post, but I didn't realize it had been over a month. There have been a lot of things going on and I have been too tired to write regularly. So, time for an update.
Marissa is not any better yet. In fact she is worse. She had another Dr. appointment two weeks ago and her medications were changed. They took her off of one that was making her blood pressure too low. They changed her anti-biotic and tried hitting the headache hard with oxycodone for one day. Other than making her sick that did not do anything, and her headache remains the same. She has had the headache for almost a year now. It started in the middle of October last year.
Marissa made it to the first three days of school and then has only made it a few hours since then. The teachers, councilors, and administrators have been very willing to work with us and try and find someway that Marissa can participate. We set up a 504 plan for her and at this point have withdrawn her from all but two classes. Unfortunately she was not even able to attend these two classes this past week.
If she is up to it she is allowed to participate in color guard. She has only made it to a couple of practices, one football game, and one competition so far. She is very disappointed about this because she loves color guard. She also misses school and her friends. There is not much she can do, and she is bored of sitting in front of the t.v. and playing on her i-phone.
Ericka is doing great is school. She has adjusted well to high school, has some nice friends, and is doing well in her classes. I think Biology and Art are her two favorite classes at the moment.
As I said at the beginning of this post, I have been very tired. I was so tired I was yawning constantly and almost unable to take care of my family. I finally went to a new doctor and the lab results showed that my iron is VERY LOW. I also was diagnosed with Lupus on Thursday. Some of you know that my mom suffered for years from Lupus, so it is a little scary, but I have been diagnosed very very early and a lot of new things have been discovered since my mom passes away 14 years ago. I will see a rheumatologist soon and get more information and a treatment plan. It was kind of weird to me that I got my diagnoses on the day of the anniversary of my mom's death. In addition I have something going on in my "lower left quadrant". I have pain and the doctor can feel some sort of enlargement/mass. I go in for an ultrasound on Thursday to find out if my fibroids have grown, if I have ovarian cysts, or if something else is going on. Surgery may be in my near future.
So, the stress level has been pretty high around our house, but we are managing. As the saying goes, "God doesn't give you more than you can handle". Sometimes it feels that way though. My friend Krista reminded me of this twist on that saying. "If God doesn't give us more than we can handle, then apparently, God must think I'm a real bad-ass." This has helped me keep my spirits up the last couple of days. It amuses me, because I don't think anyone who knows me would use the term "bad-ass" to describe me.
We are having a small family birthday party for my dad tomorrow. (74 years) Ericka has been helpful today getting the house cleaned up. I have cheesecake in the oven for dessert tomorrow, and Marty is going to make part of dinner with Marissa's help. My sister is bringing another part. So we should have a nice time without to much overexertion and stress.
Thanks for reading, and I hope to have better news next time.
Marissa is not any better yet. In fact she is worse. She had another Dr. appointment two weeks ago and her medications were changed. They took her off of one that was making her blood pressure too low. They changed her anti-biotic and tried hitting the headache hard with oxycodone for one day. Other than making her sick that did not do anything, and her headache remains the same. She has had the headache for almost a year now. It started in the middle of October last year.
Marissa made it to the first three days of school and then has only made it a few hours since then. The teachers, councilors, and administrators have been very willing to work with us and try and find someway that Marissa can participate. We set up a 504 plan for her and at this point have withdrawn her from all but two classes. Unfortunately she was not even able to attend these two classes this past week.
If she is up to it she is allowed to participate in color guard. She has only made it to a couple of practices, one football game, and one competition so far. She is very disappointed about this because she loves color guard. She also misses school and her friends. There is not much she can do, and she is bored of sitting in front of the t.v. and playing on her i-phone.
Ericka is doing great is school. She has adjusted well to high school, has some nice friends, and is doing well in her classes. I think Biology and Art are her two favorite classes at the moment.
As I said at the beginning of this post, I have been very tired. I was so tired I was yawning constantly and almost unable to take care of my family. I finally went to a new doctor and the lab results showed that my iron is VERY LOW. I also was diagnosed with Lupus on Thursday. Some of you know that my mom suffered for years from Lupus, so it is a little scary, but I have been diagnosed very very early and a lot of new things have been discovered since my mom passes away 14 years ago. I will see a rheumatologist soon and get more information and a treatment plan. It was kind of weird to me that I got my diagnoses on the day of the anniversary of my mom's death. In addition I have something going on in my "lower left quadrant". I have pain and the doctor can feel some sort of enlargement/mass. I go in for an ultrasound on Thursday to find out if my fibroids have grown, if I have ovarian cysts, or if something else is going on. Surgery may be in my near future.
So, the stress level has been pretty high around our house, but we are managing. As the saying goes, "God doesn't give you more than you can handle". Sometimes it feels that way though. My friend Krista reminded me of this twist on that saying. "If God doesn't give us more than we can handle, then apparently, God must think I'm a real bad-ass." This has helped me keep my spirits up the last couple of days. It amuses me, because I don't think anyone who knows me would use the term "bad-ass" to describe me.
We are having a small family birthday party for my dad tomorrow. (74 years) Ericka has been helpful today getting the house cleaned up. I have cheesecake in the oven for dessert tomorrow, and Marty is going to make part of dinner with Marissa's help. My sister is bringing another part. So we should have a nice time without to much overexertion and stress.
Thanks for reading, and I hope to have better news next time.
Wednesday, September 10, 2014
List of Lyme Disease Symptoms
Here is a list of potential symptoms Lyme Disease patients have.
http://www.lymeresearchalliance.org/signs-symptom-list.html
http://www.lymeresearchalliance.org/signs-symptom-list.html
Sunday, August 31, 2014
Introduction and some Lyme and Babesia basics
This is my first attempt at blogging, so I'm sure my style and content will evolve over time. Please don't judge me on my grammar and spelling. I will try my best, but my main goal is to get my thoughts down and information across.
I am starting this blog for many different reasons. First is to give friends and family updates on Marissa's condition from my point of view. Second, I hope that what I write may help others in similar situations. I also hope that it will serve as a type of record that my family and I can look back on. Maybe at some point or on occasion I will throw something in that has nothing to do with illness. Maybe a craft idea or new recipe.
First off, for those who do not know, my 16 year old daughter, Marissa, has Lyme disease and a co-infection called Babesia. She contracted both from a tick bite in 2004. It was not until this last June, 10 years later, that she was finally diagnosed. I will try and answer some of the most common questions we get in the next few paragraphs.
Lyme disease is a bacterial infection. The bacteria exist in 3 different forms within the body, making it very difficult to treat. It likes to hide and builds protective cysts around itself. There is also an intra-cellular form that lives inside of the body's cells. Current treatment consists of high doses of different antibiotics, supplements to help the body deal with the antibiotics, supplements to break up the protective barriers, limiting exposure to inflammatory substances and chemicals, clean eating and detox. Average treatment time is two years
Babesia is a parasitic infection that is similar to Malaria. It is treated with anti-malaria medications. Average treatment time is 5 months, though Marissa is on month three and has not seen any improvement yet.
Marissa got the tick bite in Western Washington, just outside of Olympia, by Summit Lake. Most people think of Lyme as an East Coast problem, but it is not. The strain of Babesia Marissa has was actually discovered in Washington.
How does Marissa feel? The answer to that is terrible. She started getting sick a lot in 5th grade. She missed about five weeks of school that year. She suffered from constant colds, sore throats and fevers. The following year she missed about 8 weeks of school. Each year she continued to miss more and more of school. She had her tonsils out, but that did not help at all. She started getting migraines. They started out monthly, but got closer and closer together until last October she got one that has not left. Yes, she has had a migraine/headache 24/7 since October of 2013. She does not get any relief from it. We have tried multiple medications, supplements, oils, elimination of foods, Chiropractic treatment, massage, cranial sacral massage, visceral manipulation, acupuncture etc. She has seen Dentists, orthodontists, Optometrists, MDs, Naturalpaths, Neurologists, Pain Therapists, Biofeedback specialists and more.
In addition to the headache, she is exhausted all of the time. Her energy level is always about a 3-4/10. Her stomach is upset, she has trouble sleeping, she gets muscle and joint pain. She has trouble concentrating and reading. She used to read all of the time and retain almost everything. Anything that was academic or called on memory was easy for her. It is not the case anymore. This could be caused by the headache, or it is also a symptom of Lyme.
She has not been able to attend school since last October. We are hoping that she will be able attend at least a few classes come Wednesday when school starts for the year. I have e-mails in to all of her teachers and am waiting to hear back from them to find out what classes and teachers will allow for a lot of absences and delayed due dates.
There is much more to tell, but I think that is enough for my first post. It will give people who do not know what is going on some quick background information. I will post again soon. If you have questions pleas do not hesitate to ask. Information and education is one of my goals of this blog.
Thanks for reading, until next time.
Kirsten
I am starting this blog for many different reasons. First is to give friends and family updates on Marissa's condition from my point of view. Second, I hope that what I write may help others in similar situations. I also hope that it will serve as a type of record that my family and I can look back on. Maybe at some point or on occasion I will throw something in that has nothing to do with illness. Maybe a craft idea or new recipe.
First off, for those who do not know, my 16 year old daughter, Marissa, has Lyme disease and a co-infection called Babesia. She contracted both from a tick bite in 2004. It was not until this last June, 10 years later, that she was finally diagnosed. I will try and answer some of the most common questions we get in the next few paragraphs.
Lyme disease is a bacterial infection. The bacteria exist in 3 different forms within the body, making it very difficult to treat. It likes to hide and builds protective cysts around itself. There is also an intra-cellular form that lives inside of the body's cells. Current treatment consists of high doses of different antibiotics, supplements to help the body deal with the antibiotics, supplements to break up the protective barriers, limiting exposure to inflammatory substances and chemicals, clean eating and detox. Average treatment time is two years
Babesia is a parasitic infection that is similar to Malaria. It is treated with anti-malaria medications. Average treatment time is 5 months, though Marissa is on month three and has not seen any improvement yet.
Marissa got the tick bite in Western Washington, just outside of Olympia, by Summit Lake. Most people think of Lyme as an East Coast problem, but it is not. The strain of Babesia Marissa has was actually discovered in Washington.
How does Marissa feel? The answer to that is terrible. She started getting sick a lot in 5th grade. She missed about five weeks of school that year. She suffered from constant colds, sore throats and fevers. The following year she missed about 8 weeks of school. Each year she continued to miss more and more of school. She had her tonsils out, but that did not help at all. She started getting migraines. They started out monthly, but got closer and closer together until last October she got one that has not left. Yes, she has had a migraine/headache 24/7 since October of 2013. She does not get any relief from it. We have tried multiple medications, supplements, oils, elimination of foods, Chiropractic treatment, massage, cranial sacral massage, visceral manipulation, acupuncture etc. She has seen Dentists, orthodontists, Optometrists, MDs, Naturalpaths, Neurologists, Pain Therapists, Biofeedback specialists and more.
In addition to the headache, she is exhausted all of the time. Her energy level is always about a 3-4/10. Her stomach is upset, she has trouble sleeping, she gets muscle and joint pain. She has trouble concentrating and reading. She used to read all of the time and retain almost everything. Anything that was academic or called on memory was easy for her. It is not the case anymore. This could be caused by the headache, or it is also a symptom of Lyme.
She has not been able to attend school since last October. We are hoping that she will be able attend at least a few classes come Wednesday when school starts for the year. I have e-mails in to all of her teachers and am waiting to hear back from them to find out what classes and teachers will allow for a lot of absences and delayed due dates.
There is much more to tell, but I think that is enough for my first post. It will give people who do not know what is going on some quick background information. I will post again soon. If you have questions pleas do not hesitate to ask. Information and education is one of my goals of this blog.
Thanks for reading, until next time.
Kirsten
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