Wednesday, May 29, 2013

Calling All Sjogren's People!


For a while now, I have been involved in two online Facebook Sjogren's groups that I check in with from time to time. Today, I found out about another one that focuses on alternative treatments for Sjogren's and as you can imagine, I am freaking out being all excited about this as it gives me the opportunity to learn from other people about what alternative treatments they are trying for Sjogren's. One of the other groups is a general group where members share idea and is also a safe place to vent about living with Sjogren's. There is also a Sjogren's Christian support group that addresses the spiritual side of things from a Christian perspective.


One of the group leaders asked me today if I can mention their group on my blog so that more people with Sjogren's are aware of it and so the group can benefit more people. I don't know why I didn't think of that before but it is a great idea. Thanks Bill!


So I am listing the group names here and providing the links. They are closed groups so you have to request permission to join once you arrive at the page.



Sjogren's Syndrome Support Group
https://www.facebook.com/groups/145386412165367/


Sjogren's Christian Support Group
https://www.facebook.com/groups/623892164294281/


Sjogren's Syndrome Alternative Treatment Group
https://www.facebook.com/groups/524174340976060/


Happy networking!!

Monday, May 27, 2013

My Medication and Supplement List


I have had many questions lately about the supplements and medications I take and about what each of them do. I answer people about this individual supplement and that individual supplement but I want to use this blog entry to not only inform people of what I take, but what each one is for. I want to make it VERY clear that I am not recommending any of these supplements and medications for any of you. Like medications, supplements come with some risks at times although my overall experience has been that they are much lower risks. They also come with significantly less side effects. I do see an integrative medicine doctor and traditional medical doctors who prescribe and/or approve this entire list. This is NOT medical advice and should not be considered as such. It is a combination that seems to be working well for me at the moment. So don't even consider coming after me with a lawyer because you have been forewarned!


The reason I am going through all of this in a blog entry is because I am feeling better recently. I think I can attribute that to other things besides this list such as the Paleo diet, yoga, exercise, stress management, and massage. However I feel strongly that this list has played a big part in my current state of health and I feel that keeping this information to myself would be a crime. We all need to commiserate and share ideas in our path to wellness. I am not saying that I am the vision of perfect health whatsoever but over the past one-two months, there has been an overall improvement.


I still struggle with many of my Sjogren's issues on a daily basis. But I also have a relatively predictable pattern to flare ups of my symptoms after overexerting myself such as a day trip or an unusual amount of activity in one day. It dawned on me today that after getting married five days ago, I have yet to physically crash in a way that I am used to. Although three days ago was a bit rough, it never got to the point of what I have experienced in the past.


So here we go:
 
 
Prescription medications:
 
Levothyroxine 88mcg daily
Restasis 1 drop each eye 2x/day
Zantac 150mg at bedtime
Low dose naltrexone 3mg every day at bedtime

 
Albuterol 2 puffs 4x/day as needed 
Tramadol 50 mg (1-2) ever six hours as needed for pain
Temazepam 15 mg (1-2) at bedtime as needed.

 
This is the least amount of prescription medications I have been on in years. The levothyroxine is a thyroid replacement that I will likely be on for the rest of my life. Initially it was thought that my thyroid was damaged because of the radiation I had for Hodgkin's lymphoma but the question has come up recently whether I also have some type of autoimmune thyroid disorder. However since I am already on medication for it, I cannot be tested.

The Zantac I am on only for another few days. I have been on it since January and it is the last of my GERD/esophagus meds to come off of. I will be restarting drinking apple cider vinegar to help with rebound reflux when I come off the Zantac next week.

Restasis is for dry eyes related to the Sjogren's. It is expensive but does help some; enough so that I am willing to deal with the money aspect. Also, there was some concern about dry eye progression and my risk of corneal ulcerations so I am faithful about taking it.

Low dose naltrexone (LDN) is an alternative medication prescribed by my integrative medicine doctor for managing Sjogren's. There is research on it showing success with other autoimmune illnesses but no studies on the effect it has on Sjogren's. I feel strongly that it helps with some of my symptoms and so I deal with the insomnia issues that come with it; especially since that is the only side effect. If you go searching through my blog, you will see a few entries about LDN.

I rarely use Albuterol anymore for my asthma since I started allergy shots and LDN but I list it so the docs know I have it. Tramadol is for pain and works well for me although it also gives me insomnia. My use of it has decreased over the past few months.

Temazepam is a sleeping medication. Like Albuterol, I rarely use it but I have some on hand for desperate situations. I found that if I take it on a regular basis, it stops working after a while and it can be habit forming. Also, Medicare drug plans do not pay for it. I have yet to get it filled while on Medicare so not sure of the cost. I am constantly working on dealing with insomnia issues but I refuse to take sleep medications regularly. What constitutes a "desperate situation?" When I am on massive doses of prednisone or the two-three nights before my wedding day.
 

 

Supplements
 
 
You can Google search each of these supplements but I am going to tell you the reasons I take them.


Trader Joe’s Omega 3 (400mg EPA:200 mg DHA) 1200mg (3 capsules) daily: I started taking this for depression and anxiety years before I found out I had Sjogren's however it also treats inflammation.
 

Vitamin D 5000 units daily: I was found to be extremely deficient in Vitamin D around the same time my autoimmune symptoms started. Many people with autoimmune disorders also have Vitamin D deficiency. 

PB 8 probiotic (14 billion units) 2 capsules daily: Provides good bacteria for my gut. One of the integrative medicine theories behind autoimmune disorders is something called leaky gut and the probiotics help to restore balance in this area.

Biotin 8mg daily: Temporarily taking this due to my hair loss from an autoimmune medication I stopped taking two months ago. Apparently it takes several months for the medication to stop causing hair loss. I have noticed some effect but not a lot so far.

DL-Pheine 500mg daily in the morning: Helps with joint pain, especially pain related to rheumatoid arthritis, which is a possible secondary diagnosis for me. I have noticed some relief since starting this. Made me a bit hyper when I started it so I switched it to morning without any further issues.

GABA  750mg at bedtime: An amino acid that can help with sleep. It has helped me more than any other natural sleep aid but not as much as when I occasionally take temazepam. Actually, many other natural sleep aids such as melatonin and valerian have an opposite effect on me.

Prenatal multi-vitamin 1 daily: Nobody get excited, I am not pregnant. I have chosen to take a prenatal instead of a regular multi-vitamin because I found out through blood work that I am deficient in copper and Vitamin A and the prenatal has higher concentrations of those as well as other vitamins.

Mastica 500 mg 2x/day: Recently started this for my GERD and esophagus issues. Treats intestinal inflammation, GERD, and gastritis. I take it in conjunction with the Zinlori and aong with apple cider vinegar, I have managed to get off massive doses of Nexium.

Zinlori 1 tablet 2x/day: A zinc based supplement for the stomach to help with GERD and esophagus issues. Promotes healing of the gastric lining. I have had zero side effects from this and the Mastica.

Petadolex 50mg daily: The other name for this is butterbur. There has been research that shows butterbur can help alleviate migraines. This is one of the best things anyone has ever given me. It has allowed me to come off a potent anti-seizure medication that was being used to treat my autoimmune related migraines.

 

Refresh Celluvisc eye drops up to 6x/day as needed: Over-the-counter drops I use as needed which right now is about 3x/day. I have tried at least seven or eight different brands of eye drops and these are the only ones that work well for me.

Allergy shots for molds, trees, cat, dust, grass, weeds: I was found to have multiple allergies to all of these things. There were very few molds, trees, grasses, or weeds that I was NOT allergic to. I get five shots every week.
 
 
That's my list. My hopes is that someday the list for both the prescription medications and the supplements will get shorter. If you have any questions or comments, please feel free to leave them in the comment section of this post.

 

 

 

 

Thursday, May 23, 2013

Our Wedding Ceremony


"I promise to always be your best friend. The person you can count on to confide in and to lift you up when you are down. I will be the gentle hand in the middle of the night and your port in every storm. I promise to do my best to make the rest of our lives together full of joy and laughter. I will always honor our marriage and I will love you all the days of my life." ~ Me
  
 
May 18, 2013

Until that day, I never believed that there was such a thing as a perfect day. I wasn't looking for perfection. At some points in the seventeen months preceding that day, I was just looking to make it to the day in one piece.
 
Until that day, I never believed it was possible to live so fully in the moment that my mind could be free of any other thoughts.
 
Until that day, I never quite fully understood the magnitude of the love that surrounds my husband and I.
 
May 18, 2013 was our wedding day. For those of you who know me or follow my blog on a regular basis, you know that it was no small feat to get to this day. 2012-early 2013 plagued my husband Chuck and I with crisis after crisis; from me being almost paralyzed and then developing life threatening blood clots in my lungs to the illness and death of Chuck's mother. There was also a lot of other bad stuff in between. Yet despite those events, we continued to plan our wedding day. We felt it was important to celebrate our love with those in our lives. We had made a decision to split up the ceremony and reception into two separate events to make it more manageable with my autoimmune illness. The reception is still to come on June 1st.
 
 
I have always been a big believer in the fact that it is the marriage, and not the wedding itself, that is the priority. Keeping that attitude in mind, I approached May 18th with a fierce determination to not allow myself, or us as a couple, to lose sight of the significance of what we were doing. And like all weddings, there were issues. Due to ending a friendship, I lost a bridesmaid two months before the wedding. There was a phone call less than 72 hours before the wedding that none of the flowers I had picked out for the groom and groomsmen were available. People I was expecting and hoping would attend were either unable to attend for various reasons or made a choice not to attend.  But when I woke up that morning at 5:30am, none of it mattered. What did matter was that by 1:45pm, this man whom I love with every fiber of my being, was going to be my husband.
 
 
I will admit, the day before was tough on me physically. Everything went very well; we got the church parish hall dining room set up like we wanted for the dessert and coffee hour we were having after the ceremony and the rehearsal/rehearsal dinner went off without a hitch. But the day was a busy one and we were both exhausted. Chuck spent that night at a hotel because he knew it was important to me that we not see each other before the ceremony the next morning. My friend Nicole, who was a bridesmaid, stayed overnight with me but unfortunately I was too exhausted when we got home at 9pm from the rehearsal dinner to even be social. Sorry Nicole!
 
 
The next morning found me spending three hours at a salon with Nicole and my maid-of-honor, Chuck's daughter Stephanie. It was a beautiful day out. 73 degrees and sunny with a slight breeze. I was a bit nervous, probably more from anticipation than anything else. I truly enjoyed this time at the salon with them and their excitement was evident. They were amazing as they ensured that every single detail was attended to and I honestly felt that if something bad went down, it would be handled. By the time we got to the church, ten minutes before the start of the ceremony, my nervousness had dissipated and I was excited to see Chuck.
 

 I was having a small issue with my dress and we changed our plans and got to the church earlier than planned. Because it was not yet 1pm, we went to the parish hall to recheck my dress issue and wait. Our parish hall is across the parking lot from the church and I was standing in a room looking out the window to the church and parking lot. It was such a surreal experience to watch our guests come in. Everyone looked so happy. I mean, seriously happy. I stood there and wondered - how did I get so blessed?
 
Chuck and I had put in a lot of thought and effort into the ceremony itself. We wanted it to be personal and we wanted it to convey our love to those in attendance. The ceremony started off by Nicole and Stephanie going down the aisle, escorted by my brother Dennis and one of our friends, Lou. The song was Can You Feel The Love Tonight? by Elton John. Then came a moment we had kept secret from as many people as possible. Chuck played and sang Marry Me by Train as I came down the aisle. It was such a beautiful moment. The guitar chords can be a bit tricky and I know he had been working on the song for months. He did such a great job and I honestly don't know how either one of us got through the song. It was amazing to see the faces of our loved ones as I walked down the aisle. It was amazing to see my stoic dad with tears in his eyes.




Smiles.
Tears.
Joy.


Since the ceremony, I have had several people mention one word to me and that is: radiant. People thought I looked radiant. The thing is, I felt radiant. At the risk of sounding arrogant I am going to mention that although we only have a small portion of our photos back, there is not a bad photo of me because so far, there is not one where I am not smiling. I just felt so content, so blessed, and so at peace. Funny how true love can do that.


We began to progress through our ceremony. We each had written our own vows. We had asked a couple that we are good friends with, and who have been married for 39 years, to speak about marriage during the ceremony. Our friend, Tom, sang You Raise Me Up during communion. Communion is not an event that many people in our faith incorporate into their wedding ceremony but it was important to us. We elected to present communion to our guests ourselves so I held the (gluten-free!) bread and Chuck held the wine (aka grape juice). Although I had cried before this point while I was saying my vows, it was communion that almost did me in. One of the first people to come up was my Auntie Helen and she was bawling. I could feel her love for us through her tears. And getting to see everyone as they came to the communion table was overwhelming because of the genuine joy and love on their faces.



The ceremony finished up and we exited the church to the sounds of our friend Dan playing We Are Family on the piano. We rang the church bell on the way out.  A receiving line followed and then down to the parish hall dining room to spend time with our loved ones. It was wonderful to be able to see family and friends that I had not seen in a while. We got home around 4pm and immediately finished packing to go away for a few days. Our Disney honeymoon isn't until September but we wanted to get away and decompress for a few days. That blog will be in the near future hopefully!


If I could sum up the entire day in one sentence I would say this: it was the best day of my entire life. Shocking considering that initially, I really wanted to elope! And I have had some amazing days: the day I graduated from nursing school, the day that Chuck proposed, the day that I found out I was cancer-free, and even the day I was married the first time. But right now May 18th is the best day. The main reason is because of the fact that the day represents that I found and have been blessed with this great love. The man that I feel privileged to spend the rest of my life with. On that day we outwardly got to celebrate our love and the union of our two lives and of our families. The day represented our willingness to work through difficult times and issues in order to commit ourselves, before God, to each other.



It was the best day because of the people who surrounded us and the wedding represented all of the support we have received both individually and as a couple from family, our church family, and our friends. I have so many snapshots in my memory bank of people. I have often told Chuck that when I am in a bad situation with my health and I am feeling down and sick, I often play back positive images in my head of good times we have had together and it helps to relax me and helps me to refocus my energy. Typically it is a memory of Chuck and I on the beach in Maine or some other happy time where I felt loved and safe.


The people in our lives have given me a new image.
The one from our wedding ceremony.
The one where I see their faces and feel their love.
The one where I hear words of joy and sounds of laughter.
The one where I feel an abundance of love, hope, joy, and peace.



I am grateful for this incredible day that we had together. I am grateful for every moment that I chose to not give up on true love. Most importantly, I am grateful for my husband and the beginning of the next chapter of our lives together.

























































































Photos Courtesy of Susan SB Photography: https://www.facebook.com/SusanSBPhotography/info

Monday, May 13, 2013

Keep Going


There are very few people who follow my blog or who are even in my life who know the extent of the disaster my life was from about 2001 through 2009. I was in a destructive marriage with a man who was abusive, an alcoholic, had PTSD, and was just a difficult person to live with. A man who decided about two years into our marriage that he did not want children. I had distanced myself from some of my family and many of my friends. I held a job that I loved but yet found very stressful. For some of those years I was seventy-seven pounds heavier than I am now. I had a food addiction and low self-esteem. There were many times when I considered suicide and the threat was real enough that I was hospitalized several times for depression. For a period of time, I was even considered to have bipolar disorder and I was trialed on every class of psychiatric medications that existed. The diagnosis was later retracted by the same psychiatrist who diagnosed me and my mood issues were thought to be the beginning of my autoimmune disorder, coupled with significant environmental stressors. Then the physical symptoms of my autoimmune illness began.


2008-2009 found me very sick with Sjogren's syndrome. I eventually ran out of sick time and FMLA and lost my job. On the day that my ex-husband threatened me and I thought he was going to be physically violent because he was so drunk, I told him we were done. I got divorced and lost my home. I lost one of my beloved dogs. No job, no home, no kids, no health, no marriage...no nothing.


But wait, I did have something. I had God. I had my family. I had a few friends.


I had myself.


So why am I even bothering to tell you all this six days before I marry my second husband? Because I want people to know. I want to tell anyone reading this who thinks that the only way out is through suicide that there is always a better way out. There is help out there. You can change your situation. The feeling of hopelessness you have now does not mean that things can not get better.


My upcoming marriage has stirred up a lot of emotions recently. Obviously that is due in part to the fact that I am marrying this incredible man who is my best friend and whom I love with all my heart. But the emotions are also there because over the past few weeks, I have stopped to think about where I am and how far I have come. Because at some point I stopped letting myself be a victim. I dealt with my depression and anxiety. I saw a therapist. I developed a positive attitude. An attitude that got me through some pretty dark days. I worked on my relationship with God and with myself. Step by step I made changes in my life that enabled me to be a whole person rather than the empty shell of one that I was during those years.


I still struggle with health issues. I still struggle at times with my self esteem. But at the end of the day I like the face of the person looking back at me in the mirror. Sometimes it is hard for me to think back on the past and even believe that was me. However I have to look back from time to time because those experiences have helped make me the courageous and determined individual I am today.


I am at peace.
I am happy.


So please don't give up. You are worth more than the sum of your bad experiences. God has put you in this world for a reason. The reason may not be apparent to you now. It may never be apparent to you but I promise you, your presence in this world will make a difference to somebody.


Be strong.
Keep going.

Friday, May 3, 2013

Continuing Down The Road Of Integrative Medicine

So today is my birthday and no, this is not a post about how great birthdays are; even though they are great! Rather, I am giving myself the birthday gift of writing a quick blog about something important to me and maybe to you too. With our wedding coming up in fifteen days, my writing frequency has taken a sharp decline lately, hence why it is important that I hunker down and get this written so that I can then take my pooch out and enjoy this beautiful day.


As I wrote in a previous blog Going Down The Road Of Integrative Medicine, since November, I have been going to a wellness center in a nearby town to see an integrative medicine doctor in the hopes that they can help resolve some of my autoimmune issues. Because let's be honest, I have been treated for Sjogren's syndrome for over five years now by traditional doctors and I haven't really gotten too far. Actually last year, I would say that in many aspects I even got worse. I have some very excellent specialists who know what they are doing but I am beginning to learn that chronic illness, especially autoimmune disorders, are extremely difficult to manage and treat. When they are treated, it usually means with potent and caustic medications, some of which can eventually kill you. The medications used treat the symptoms, not the cause of the illness.



Don't get me wrong, I am not abandoning traditional western medicine. I feel strongly that there is a place for medications like steroids and stomach acid blocking medications (PPI's). However I also feel strongly that staying on these medications indefinitely is not the answer to managing my Sjogren's. For someone else, it may be and that is OK. But there came a point last year where I looked at my medication list and it contained about fifteen different prescription medications. And I was still pretty sick.


As I wrote about in the previous blog, I began my integrative medicine journey by starting an alternative medicine for autoimmune illness called LDN and I also started with allergy testing. Since then, I have spent countless hours, fifteen hours to be exact, having extensive intradermal allergy testing done. I was shocked by the results. I am allergic to most molds, weeds, grasses, and trees as well as cats and dust. I now receive five allergy shots every single week.


As many of you know, I also changed to a Paleo diet. This was not suggested by my integrative medicine doctor but rather it was something I researched on my own. I strive for an 80% compliance rate with this way of eating.


However as the months went on, I started to become frustrated with my integrative medicine doctor. I felt very rushed during my appointments and I didn't feel like I was being treated as a whole person, which is an integral part of this modality of treatment. I was anxious just going to these appointments. I wasn't getting returned phone calls in a timely manner over an issue that was pretty significant at the time and I felt like my practitioner and I were not connecting in a therapeutic way. He wasn't the right doctor for me.


However I had been doing a lot of research about the use of integrative medicine in treating autoimmune illness and on top of that, I really liked the rest of the staff at the wellness center. I looked into switching to another provider. I have to be honest, this was very difficult for me because I still have a hard time advocating for myself at times. Especially since this is a relatively small practice and I knew there was a chance of running into my old provider. But at the end of the day, my health and wellness is the priority.


Yesterday was my second visit with my new practitioner. I will call her S. She is a physician's assistant who is new to the practice. This did give me pause when I made the appointment because I wanted to make sure I saw someone with experience. I decided to take a leap of faith and it certainly paid off.


I never feel rushed during my visits with S. and she made it very clear that she is there to help me get as healthy as I possibly can. One of her concerns was about the GERD medicines (PPI's) I am on due to my Sjogren's. I knew there were risks to long term use of these medications (Nexium and Zantac) but I didn't know the full scope of the risks and issues associated with their use. If you do a Google search of "risks with PPI's", you will see what I mean. She also explained to me about how our body needs stomach acid for proper digestion and that it is likely I am not absorbing the nutrients and supplements that I am taking because I am suppressing my natural stomach acid. It seems counterproductive to me to eat very healthy and take supplements if I am counteracting their effects. However I also know that my reflux issues are real and severe due to my malfunctioning esophagus. I have had some relief from dietary changes but it hasn't been enough.


S. suggested two supplements that I can take for my stomach (Mastica and Zinlori 75) that helps restore the natural state of digestion, rather than suppressing it. She told me to stay on my prescription meds until these have a chance to kick in and then if I feel comfortable with it, to start weaning off of them. She compared the PPI's to prednisone. They both suppress the problem but they do nothing to solve it.


This is where things become tricky for me. I do realize that as my prescription med list shortens, my supplement list gets longer. And I am OK with that because it is part of getting my body to heal itself and I imagine I won't be on these supplements forever. I have also noticed that as the shift occurs, I am starting to feel better. However the issue for me is trying to deal with all the other specialists that prescribe these medications. To them, they are doing what they think is in my best interest but they are not the ones living with the consequences of these medications; many of which sometimes don't even work all that well.


So I had a heart to heart with S. about this. I explained to her that I take a lot of crap from my other doctors for going to the wellness center. There is an incredible amount of resistance in the medical world to the concept of the body being able to heal itself. I have already had to deal with my rheumatologist and pulmonologist regarding this and now I am going to have to face my gastroenterologist who is old school and most likely will flip out over me weaning off my meds. S. was very supportive about this. She gave me a great pep talk about continuing to advocate for myself and my body. She said that it is my choice to take her recommendations and there is no pressure to do so. She spent a lot of time printing out some appropriate articles for me that may be helpful to present to my other specialists. Our discussion reminded be that I am strong and resilient. I have to remember to be that way when I go to my other doctor's appointments. S. made me feel like we are partners in this journey and it was in that moment that I knew I could trust her. I knew she was the right fit for me.


I will be honest, the road of integrative medicine is still a very scary road for me. It defies everything I was taught in nursing school. It defies everything I have been told by the bazillion doctors I have seen over the years. That being said, I know in my gut that something about it feels very right to me. As my medication list shortens more and more each week, I look at where I am now compared to where I was at this time last year and the evidence is there. I may not be a vision of perfect health and I may not be in a place to go back to work yet, but I am definitely several steps closer.


I know that what may work for managing my health may not work for everyone. But I am taking the time this morning to write this because I want people to be aware that there are other options to treating your autoimmune illness, as well as the many other chronic illnesses. There are answers and soutions beyond the pharmaceutical industry and I think we all owe it to ourselves to explore as many of those options as we can whether it be vitamins, supplements, diet, exercise, massage, acupuncture, meditation, stress management, yoga, reiki, prayer...whatever it is that you feel comfortable trying. Open up your computer or visit a bookstore to learn more. Don't settle for what you've been told. Don't settle for the words "there is no cure."


Learn.
Fight.
Reclaim your body.