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Category: autoimmune disease (Page 17 of 19)

Patient, Heal Thyself

January 17, 2012 / / 5 Comments
“It is during those quiet hours of desperation that truth and enlightenment are revealed to us.” ~ Me

https://paradiseperformingartscenter.com/qvo5i3n The past five days or so have been some of the longest I have physically struggled through in quite a while. You know that saying “It can’t get worse?” Well, it can get worse so you may want to think twice before uttering that well-meaning phrase. When I thought that the Sjogren’s joint pain I experienced back in 2008, before I was treated with any type of medication, was as bad as it could get, I didn’t realize that it could be outdone by the stabbing, burning, and agonizing feeling of nerve pain. Well at least that is what it seems to be according to my primary care’s physician assistant. I’ll get back to you all on that when I can finally get in to see my rheumatologist this week.

http://www.mscnantes.org/8gyg8sx So the hours of the holiday weekend ticked on. I tried not to panic when I struggled with my coordination and balance as I tried to get some errands done with Chuck. I prayed for relief and did everything within my resources to deal with it. My mental arsenal was (is) low because the medical plan has been to treat this issue at home over the weekend, until I can see my rheumatologist, with a high dose of steroids; a dose that I have only taken once or twice without being hospitalized. To be honest, I prefer to be at home, despite my anxiety over my stumbling into a wall here and there. The problem though is that as I have previously blogged about, the steroids wreak havoc on me. Especially when first starting the drug and especially at larger doses, unprovoked crying jags are frequent, I start to feel a little out of control, and sleep is nothing but a distant memory.

Tramadol Order Online Overnight As I wrote about in my previous blog entry Giving Up and Finding Peace, recent health events have found me on a path of wanting to give up fighting and struggling with Sjogren’s all the time so that instead I can work towards accepting where I am in my journey with this illness and become more effective in my coping and my ability to live a more peaceful existence.

Purchasing Tramadol While I was trying to cope hour after hour over the past few days, I used a variety of things to distract myself from focusing on the pain and side effects of the prednisone. One of those distracting techniques was spending time surfing the net, especially when television was lousy at three am. I did a lot of surfing about diet and nutrition these past few days.

here Even before these past few difficult days, I have been spending time talking to other Sjogren’s patients and doing research about the role of nutrition and diet in autoimmune disorders. As many of my readers know, I started making more of a conscious effort last spring to eat healthier and exercise when I was able to. It was about getting healthier and I thought that losing weight would accomplish that. I did lose some more weight in addition to what I had lost over the past two years but then as I got a little lazy and took more steroids, I gained a little back. What was important though was that I learned a lot about nutrition along the way and improved my cholesterol scores dramatically.

Ordering Tramadol Online Uk So during those wee hours of the morning, while surfing the internet and reading articles and patient stories, I had my moment of truth.

https://www.brigantesenglishwalks.com/p2i4aylwaf I was enlightened.

https://guelph-real-estate.ca/lgnsaazpp I realized that I have truly never accepted the notion of treating my illness with nutrition.

https://www.mreavoice.org/hyllgz7 Why?

go Because I didn’t think that I could do it and I didn’t want to let go of the multiple dependencies I think I probably have on certain types of foods like sugar, additives, dairy, and processed foods. I wasn’t fully taking responsibility for my health. I was complaining on a regular basis about the failure of the medical system; a system that was not helping me get better. But yet, what about my responsibility as the caretaker of my body?

https://getdarker.com/editorial/articles/whbi2spx After all the reading I have done over the past week, it is absolutely ridiculous of me to not pursue drastically changing my diet in an attempt to improve my health. Yes, there are not tons and tons of factual scientific studies saying that eating a more plant based diet and eliminating gluten, dairy, additives, and processed foods will cure your autoimmune disorder, but the stories are there. People like me who feel better, have fewer flare-ups, and more energy eating in a more healthful way.

https://www.marineetstamp.com/s4sx9xrjh After all the new and recurrent Sjogren’s health issues I have dealt with over the past six months, how can I NOT give this kind of eating a real chance? The challenge of eliminating gluten and most processed foods in addition to the dairy, soda, and high sugar foods I have already eliminated overwhelms me. I mean really, what is there left to eat? Ahh, veggies…and fruits…nuts and beans…gluten-free grains. The good stuff so they say. I don’t expect it to be a miracle cure. But I do expect to gain something from putting some faith in myself and in what kinds of things I put into my body. And who knows, maybe the process will also help me attain a little peace along my journey….

https://alldayelectrician.com/19r4q13j Photos: Courtesy of Chuck Myers and Google Images

Giving Up and Finding Peace

January 14, 2012 / / 9 Comments
“Anything in life that we don’t accept will simply make trouble for us until we make peace with it.” ~ Shakti Gawain

https://purestpotential.com/q1ylgshmo My fiancee and I were watching a movie in bed last night, Not because we were having this big romantic lustful evening, but because our bed was the only place I could get remotely comfortable after a nightmarish week of autoimmune related health issues, including severe pain. After the movie finished, I turned to him and asked him if he ever just felt like giving up. The question came out of my mouth so fast that at that moment, I realized how strongly I felt about wanting to give up. I didn’t mean giving up as in ending my life, but I meant giving up in the sense of not fighting so hard to try and be well. I wanted to give up all the doctor’s appointment, medications, advocating for myself, all of it. Most importantly I wanted to give up trying to maintain this positive attitude of “life is great, I am so grateful” crap.

go site Because reality is, sometimes it is crap. I have always tried to adopt this attitude of “fake it till you make it” because I honestly do believe that it works. The power of positive thinking is a strong one and thoughts do dictate emotions. If I am feeling down and out, I act like everything is better than it is; not because I am in denial but because positivity perpetuates wellness. The problem is that sometimes it does not give you the opportunity to truly acknowledge that sometimes things just suck. You go along through a chronic health situation and all of a sudden, the wall of illness seems insurmontable; the odds too difficult to beat. I think that as patients, and as human beings, we need to stop and be true to ourselves in acknowledging the reality of a lousy situation.

https://onlineconferenceformusictherapy.com/2025/02/22/fru29i9bstl But maybe it is not about beating the odds and maybe it is about finding new ways to go around and over the wall of illness rather than trying to get through it. It is becoming quite apparent to me that over the past six months or so, the course of my Sjogren’s Syndrome has become more severe. Rather than being stable for a few weeks or months at a time, I am constantly dealing with one issue or symptom exacerbation after another. I cannot do everything I was capable of doing six or nine months ago. My ability to socialize on a regular basis or take any kind of trip has diminished significantly. Even the daily activities, such as housework and errands, that I could do more readily have been impacted.

https://penielenv.com/2xn4zz5nnwe So where has this left me?

Rx Tramadol Online It has left me really ticked off…and frustrated…and discouraged.

https://www.mbtn.net/?p=kbsh4jd As this week has progressed and I have found out that my most recent pain and walking crisis may be due to Sjogren’s related nerve damage, I have come to the realization that I am constantly attempting to go through the wall rather than around it or over it. My motivation in trying to get myself better is to try and physically be the person I was before I got sick so that I can go back to work as a nurse and do all the social and physically active things that I used to be able to do. The problem with this is that I have this illness that does not allow for that. I can sit here banging my head against the wall and say I am going to be strong and determined. I WILL overcome and beat this disease. But all this does is leave me working for something that may be impossible to attain while at the same time losing sight of what I DO have. And I have a lot.

https://www.brigantesenglishwalks.com/n36t34lw40v And the worst part of all this is….

https://alldayelectrician.com/aqu0ss0 I have no peace.

source url The nerve pain has ravaged my body leaving me sleep deprived, cranky, and overwhelmed recently. The worry and stress over how poorly my body has been functioning and the implications of yet another system involved in my illness has eaten away at me.

Order Tramadol With Mastercard I have no peace.

watch I am so busy trying to be strong and determined in an effort to defeat the Sjogren’s beast that I have let it rob me of my peace. This in turn makes me quesion everything else about myself; my ability to follow through on social commitments, my ability to persist with my Sjogren’s book project, my ability to be the kind of partner that my fiancee deserves.

https://dcinematools.com/42gi5rp So instead of trying to go through the wall and get back the body I once had, I think it is time to find a way around the wall and develop ways to effectively cope with the body I have now. Maybe this is what I meant by saying I wanted to give up. I want to stop fighting and resisting. Rather, I want to accept the reality of where I am and the implications of my diagnosis while at the same time, continue to learn and utilize different healing treatments to restore and maintain as much of my functioning as my body will allow. I want to attempt to find ways to cope so that my pain and other symptoms do not dictate where I am mentally or spiritually as a person

https://www.mreavoice.org/1qit8ya8yq And if I can accomplish this maybe, just maybe,

https://www.yolascafe.com/s07h5czo I will have peace.

go to link Photo Courtesy of Chuck Myers

Ordering Tramadol Online Uk Photo

The Power of Facebook

January 9, 2012 / / 10 Comments
I have read a lot of articles lately about the hazards of Facebook. These articles have talked about how teens, and also adults, can bully each other through the use of this social media giant. The articles also mentioned how many people get so consumed by checking status updates, notifications, and playing games on Facebook that the other aspects of their lives suffer. Facebook has also been blamed for less face to face interactions between people which results in social isolation. I don’t disagree with any of these claims as I have witnessed all of these pitfalls of Facebook. But I would like to present another view about Facebook that many people I know never get to experience.

https://lpgventures.com/6p155ce9dx When you have a chronic illness, social medias like Facebook can be your saving grace. Since I started battling Sjogren’s Syndrome, Facebook has been an enormous wealth of information and support for me. To start with, there are a vast amount of pages and groups that discuss various topics, which is helpful when you are trying to access information about such a poorly understood illness like Sjogren’s Syndrome. These pages and groups provide a diverse selection of information regarding subjects such as nutrition, alternative health, wellness, exercise, and positive inspiration.

get link One of the most significant of these Facebook pages and groups is one I follow on a daily basis called the Sjogren’s Syndrome Foundation page. It is a place where patients, and others, can discuss different ways to manage symptoms and what treatments they find useful or not useful. It is a place where we can vent our frustrations to people who truly understand what we are going through. I have had the opportunity to receive some very good advice and tips from this page as well as the opportunity to help others; something that is so critical when you are out of work as a nurse and miss having the capability to give back to other people on a daily basis.

https://paradiseperformingartscenter.com/r4xg15qyxk I have also had the chance to get and know some of the wonderful people on the Sjogren’s Syndrome Facebook page on a more personal basis through e-mails and online conversations. They have become a valuable part of my journey through this illness. Because of them, I have learned about the power of sharing my story and of hearing other people’s stories.

click here One of the stories that I have been blessed to start hearing lately is in part due to Facebook. A while back I sent a friend request to someone in my church. This person spent some time reading my blog, which I post on Facebook regularly. She realized that I had Sjogren’s Syndrome. She also has a friend, who lives in our small town, that has Sjogren’s as well. This friend and I have now had the opportunity to connect through e-mail messages. According to statistics, Sjogren’s is not that uncommon as it affects four million people in this country. However the reality is that it is an illness that most people have never heard of and is very poorly understood, even amongst the medical community. Therefore it would seem amazing that two of us have found each other in this relatively small town. It is quite a blessing as well.

follow link Another aspect of Facebook that I have found invaluable is the easy access it has given me to my friends and family, as well as to the world in general. It is very easy to become isolated when you are living by yourself, which I did for almost two years before moving in with my fiancee; or when are suddenly out of work. You never realize how much your work life provides you with social interaction until you find yourself jobless. Between managing my health, my home, and other day to day needs, I never find myself bored, but it can be challenging to keep connected with the world from your home when most of the rest of the world is at work.

Online Tramadol Prescription Also during the course of my illness, I have had difficulties with my voice and breathing which has made communication on the phone not a viable option at times. Issues with mobility, pain, and fatigue oftentimes makes leaving the house impossible. Facebook provides me the opportunity to be a part of our daily world when my body does not want to. For me, Facebook has not caused social isolation as is so frequently stated in these articles I have mentioned; it has freed me from it.

So despite the fact that Facebook often drives me bonkers with all of its constant updates and changes, not to mention the ongoing privacy issues, I say “thank you” to Mark Zuckerberg for his ingenuity in the creation of this social media giant. Thank you for giving me, and so many others, the opportunity to support each other and enable us to be more informed and educated patients.

Photo: Courtesy of Google Images       

Music and Love

December 19, 2011 / / 4 Comments
“The total person sings not just the vocal chords.” ~ Esther Broner
“Singing is a way of escaping. It’s another world. I’m no longer on earth.” ~ Edith Piaf

Every year my church has a Christmas Cantata. Last year, our Cantata was going to be my first concert as I had just joined the choir about six weeks prior to the performance. A good friend of mine, Kathy, was a long standing member of the choir at that time and had encouraged me, despite many physical obstacles, to join the choir as she knew my passion for singing. Tragically, my dear friend died suddenly on December 17th, two days before our performance. It was a very difficult time to say the least. The cantata was a blur. My clearest memory of the event that day was the effort I, and the rest of my choir members, had to make to keep from crying while we were singing that morning.

One year has passed since that terrible week and another Christmas Cantata has arrived. I was looking forward to making new choir memories that were not steeped in so much sadness during this holiday season. This year, my boyfriend, Chuck, and I had the opportunity to sing a duet of the popular Christmas song Mary, Did You Know? I had never sung it before and I knew it might be a challenge because I had never even heard it sung by someone else.

Chuck was going to play the guitar as well. He found the chords online and we slowly started to put together a melody and harmony that we thought would work. The process became very interesting to me as the days and weeks went along. Anyone who knows me is aware that I have struggled to overcome a lot of my Type A tendencies in an effort to lead a more relaxed and fulfilling existence. When we were first putting the song together, I would drive Chuck crazy with all my questions about if we should do it more like this person or that person; or if we should do it more like how they do it on this YouTube video or that one.

He was so patient with me. What I learned from him as we went along was that as long as we both felt comfortable, liked the way it sounded, and FELT the music, nothing else really mattered.  All of a sudden there were no rules, no guidelines. We didn’t have to do the song as others had done it before us. We could make it our own.

About ten days before the Cantata, I had a very sudden and severe respiratory flare-up from the autoimmune disease I have. It was the worse I had experienced in a year and a half and it was one that would typically land me in the emergency room or worse yet, in the hospital. I really did not think I would be able to be well enough to sing at all on Cantata day. And I was upset, really upset. With the exception of a four week respite from my symptoms following a steroid injection, I was dealing with symptom flare-ups constantly and I was sick of it. It seemed like almost every time I tried to accomplish something that was important to me, I also had to contend with a medical crisis. The timing of this particular flare-up was horrendous because it was going to interfere with something I had poured my heart into. I tried to sit back and take the attitude of “it is what it is” but that only lasted about a day or so. I needed to get myself well enough to sing. I didn’t want to cheat Chuck or myself out of this experience together. I didn’t want to let my fellow choir members down.

There is something to be said for all the learning I have done to regards to managing this autoimmune illness. I talked to my pulmonologist and my acupuncturist and decided to step up my acupuncture treatments a bit and more importantly, go back to taking Chinese herbs. I called my speech therapist from a year and a half ago and she talked me through the techniques we had gone over at my previous appointments. I restarted the speech therapy at home with a vengeance. I doubled my effort to relieve some of the dryness caused by the Sjogren’s which I knew was making the situation worse.

Forty-eight hours and I was better, much better and as the days went by, my breathing not only improved, but my voice got stronger. I was diligent about protecting my vocal cords because I knew I was not yet 100%.

I should know better than to get too comfortable with my body when I do not have my illness under control. Two days before the Cantata and I noticed it was painful to eat. I looked in my mouth and saw that my inside right cheek was ridiculously swollen. From looking at it, it appeared I was having another flare-up of my parotid gland with a likely infection. I was also having terrible headaches and sinus pain with nasal discharge that also looked infected, which of course was affecting my voice.

After hours of trying to get a hold of my rheumatologist on a Saturday (I found out today that they don’t have weekend/night coverage), I just said to hell with it. I knew I had an infection and probably inflammation as I had been through this once before. I started myself on steroids and antibiotics which I luckily had extra supplies of at home.

Twenty-four hours later, Chuck and I sang that song.
And we sang it well.

Shocking considering I have, guess now I can say “had”, terrible stage fright. I had never sung with just one other person before. Usually I sing with a whole group of people and even that sometimes leaves me a little rattled. When Chuck and I ran through the song at choir rehearsal several days before the performance, I was responsible for holding our music because he was playing the guitar. My hands shook so bad when we rehearsed that we decided to use a music stand instead because otherwise he couldn’t follow the page with the words shaking all over!

That day that we sang that song though, I didn’t shake at all. Because this time, I looked at him while we were singing. I focused on him and the beautiful music that was coming from his heart. In those two and a half minutes, it was just him and I; not in a church with a LOT of people, but in the safe refuge that we call home.

There was something incredibly special about singing that song with Chuck. I know this sounds corny, but it truly has brought us closer together. We each have had more on our plates than usual lately which has resulted in a lot of stress and sleepless nights. Although I think we do well with supporting each other, practicing this song together night after night was a different way of supporting each other’s wellbeing and sanity. We had a common goal that didn’t involve job stress, health stress, financial issues, or relationship issues.

It was just us and the music.

It was our way of honoring Kathy.
It was our way to honor the upcoming birth of Jesus.
It was our way to give to the loving church community that we are involved with.
It was our way to give to each other…

Not just music, but love as well.

Mary, Did You Know?
http://www.youtube.com/watch?v=AHHwlmf7SeE&feature=g-upl&context=G2a64dc9AUAAAAAAAAAA

Photo Courtesy of Google Images

Doctor, I Trust You

November 13, 2011 / / 4 Comments
“I observe the physician with the same diligence as the disease.” ~ John Donne

Trust.

Doctors.

For the most part, it is difficult for me use those two words in the same sentence, unless the prefix “mis” is used in front of trust. In some ways, my mistrust of doctors is surprising because in general, I am a very trusting person. However like any other relationship, the patient-doctor relationship is vulnerable and when that trust is broken over and over again, it is then difficult to enter into another patient-doctor relationship with the confidence and trust that is needed to build a cohesive team.

I have very good reasons not to trust doctors. To start with, I am a registered nurse. I have spent a lot of time working in a teaching hospital and have seen firsthand the potential and actual mistakes that can be made when treating a patient. I have witnessed more times than I can count, novice and experienced doctors alike make grievous mistakes that sometimes have been thwarted by nurses and other medical professionals such as pharmacists. Sometimes, those mistakes do reach the patient.

However my bigger trust issues with physicians is due to my years of experience in being a patient. My first bad experience came when I was twenty-four years old and had Stage Two Hodgkin’s Lymphoma, which was misdiagnosed for over six months because two different doctors did not think it was probable for someone my age to have cancer. Then I was told several years later that heart palpitations I had been experiencing were due to anxiety; only to find out four years later that I had an actual conduction problem in my heart which was causing my heart to not function properly (AV Nodal Reentry Tachycardia). The third incident occurred over the past several years when I was battling a host of physical symptoms and was told by doctor after doctor that they could not find anything wrong with me. I was convinced I had an autoimmune disorder. Several doctors were convinced I was crazy. That myth was dispelled when a lip biopsy came back conclusive for an autoimmune disorder called Sjogren’s syndrome.

It would be easy to sit back after all of this and say “to hell with them” but the reality is, I need doctors. I also need to be able to trust the people who have my life in their hands. Easier said than done. So how do we do it? How do we build a trusting relationship with our physicians?

Like any type of relationship work we do in our lives, we have to start with ourselves. We have to look at what we do on our end that acts as a barrier between us and our doctor. For me, it was a matter of checking myself at the door. Because no matter who the doctor was or what the problem was, I always thought I was right. Of course I didn’t always let my doctor know this. Sometimes I would verbally disagree with a diagnosis or a treatment idea, but then other times I would go along with what they said, yet never really trusting that they had the right answer. The problem was, I was confusing thinking I was right in terms of medical knowledge with being right in terms of listening to my own body.

The attitude of not trusting what my doctor was saying was counterproductive because in order to heal, you need to believe and have faith that what you are doing to your body to heal it is making you strong and well. I fully understand that I got this attitude from incident after incident of being let down by doctors, subsequently putting my life at risk. After a while though, you have to stop judging people based on something wrong someone else did to you in the past. It doesn’t mean we cannot be educated and well informed patients. It means that we are partners with our physicians and we need to hold up our part of that relationship.

There are several other steps I have taken to build a trusting relationships with my doctors (I have several). To start with, I doctor shop. I find a doctor who is going to treat me with the care and respect I deserve. Because if they do, then when differences arise, we can attempt to work them out. I don’t doctor shop intentionally and I know this is frowned upon by the medical community, but if I have a doctor who either dismisses my current health concerns or cannot figure out what the problem is, I leave. Pure and simple. I may have worked on checking my cockiness at the door in terms of my medical knowledge, but I know my body. I know when there is a problem. Because of this tactic, I am on my fifth rheumatologist in three and a half years. And you know what? After all that time, I finally found one who correctly diagnosed the autoimmune disorder I have and is working with me to find the most beneficial medical treatment for my disorder.

I go to my appointments prepared and well informed so that my doctor takes me seriously. I ask questions, lots of questions. Not questions to challenge their medical knowledge, but questions that require an explanation for a diagnosis, treatment, or medications. Answers that will help me to understand what the plan is and subsequently help bolster my confidence in them. Finally, I try to remember that at the end of the day, my physicians are just human. They are not perfect. They are not God. They are people like you and I who happen to have a lot of education; which enables them to be called “doctor”. Therefore, when one of my specialists forgets a detail about me and asks me again because she just returned from a weeklong conference on the other side of the country, I take a deep breath and just remind her.

Trust takes time to build. And patience. I am now starting to reap the benefits of taking these steps towards building trusting relationships with my doctors. I am more receptive to trying new approaches to managing my illness, whether it is conventional or alternative. I am less anxious. Although I still keep careful track of what is going on with my medical treatment, I am not lying awake night after night wondering if someone screwed up. I am confident in the choices I have made in my medical providers and because of that, I can give up some of the tight fisted control I have felt I have had to maintain over the past sixteen years or so.

I feel a little lighter.

A little freer.

A lot more sane.

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