A New One For Me: Inclusion Body Myositis

So another condition has been brought to the IWGW notice and it's one I'm not familiar with, but it intrigued me. Inclusion Body Myositis which is an autoimmune where groups of muscles inflame. It can be larger muscle groups or even smaller muscle groups that are affected. It causes major muscle weakness. The first signs a patient would notice would be increasing clumsiness, falling, weakness over a period of time that could be months or even years. There is not an effective treatment yet.

Now, it brings me to wonder why there isn't an effective treatment? I know that a lot of autoimmune patients absolutely hate steroids, but they are an effective method of reducing inflammation. I guess that's why it intrigued me. Oh, and it mostly hits men more than women, which in the autoimmune world is also a rarity.

I will be adding this disease with full information to the IWGW website, as soon as I have time. But I did find information directly from the National Institutes of Health and the Myositis Association websites if you would like to read more about this debilitating disease.

I've also found books at eBooks.com and Better World Books:

          

Thanks for hanging in there with me!
Love, Tam

      

     

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Revisiting Fibromyalgia - A New Education For Me

So today I want to revisit Fibromyalgia. As some of my people know, I have been dealing with "unclassifiable autoimmune" since 2007, and in 2008 was diagnosed with secondary Fibro, Raynaud's Phenomenon and in 2009 Sicca Syndrome. Up until recently all of my specialists seem to agree that if we got the autoimmunes under control, the Fibro should go away on it's own, and I held hope for that. Who wouldn't? Well, recently, we've learned differently.

Early last year, I got a new Rheumatologist at UW Health Madison, Dr. S. At the time I was on methotrexate tablets which were helping tremendously, but the side effects were hard to bare. So, Dr. S switched me to weekly methotrexate injections, we did some more blood tests and her feelings were that my autoimmune was more Psoriatic then Connective Tissue, which actually relieved a lot of my worries. She also stated that she felt my Fibro would not resolve itself because now it's "too deeply rooted". My heart fell, but I stayed positive hoping she was wrong. She planned to address treatment of my Fibro on my next visit.

Before my next visit which would have been October, 2012, I moved 2 1/2 hours away to Plover. So, had to find all new doctors, which I did. Keep in mind I am still believing my Fibro to be a secondary condition. I was also off my shots due to a serious sinus infection and bronchitis that wouldn't clear up. So, found a new Rheumatologist at Aspirus in Waukesha, Dr. C. My first visit, my records had not yet reached the new office, so he basically started from scratch. He was good, but very business like and very concentrated. He reran all of my blood and did new X-rays on my hands since they are the worst. He instructed me not to restart my methotrexate and come back in 3 weeks to go over all of my results. My 3 week appointment was last week. And - I got the surprise of my life.

My autoimmune panel is now all normal except for the Rheumatoid Factor - it's at 312. But, he ran more specific tests for RA because my hands were why so many doctors were convinced it's probably RA. My fingers are knotted horribly, warped and starting to curl under. Well, Dr C addressed everything, did an exam and then sat me down for my new diagnosis. My autoimmune is no longer. What happened to it? We don't know. Maybe it was the methotrexate or just went away on it's own. So what am I left with? Full-blown Primary Fibromyalgia. Wow - wasn't expecting that, was truly hoping it would go away. If any of you have knowledge about Fibro, you know that secondary is a bit different than the primary form. Primary is much worse. I was relieved in one way that I no longer had autoimmune and Fibro can't kill me, but to be told that something you thought would go away is now going to be a part of your life the rest of your life was brutal. I asked him, "So this means I will have this pain and fatigue the rest of my life??". He told me that's what it means, and that it also means that the rest of the symptoms I have left, like the headaches that my ENT is addressing would be there, the nerve problems, the sleeping problems - everything - I will have this forever. Damn.

But that wasn't the worst of it I guess. He also diagnosed Osteaoarthritis in my hands instead of RA. I was kind of hoping that it was RA because they have these new drugs that can reverse damage. They can't do that for Osteo. Damn, means I'm losing my hands. I'm a web developer - how can I work when I can't use my hands?? And he says they will just get worse as I age - lovely.

So that's where I stand. I have Fibromyalgia, Osteaoarthritis, he also changed my Raynaud's diagnosis to the primary disease instead of the phenomenon. I already knew that I have early stage Osteoporosis. I've been trying to process all of this since my visit with Dr. C. As of this morning, I've come to terms with it, and have been educating myself the last few days. One thing, is that Dr. C was great about advising me what I can do to have a better quality of living, which I would like to share with you.

For one, I'm already on Gabapentin (Neurontin) and Tramadol (Ultram) and have been for 3 years. He is upping me to the maximum doses of each. He says that will help with the pain and nerve firings.
Two - exercising. He recommends 30-45 minutes three times per week. He also recommended Water exercise as being the best form. I already do exercise, and have been trying to get into our Water class at my YMCA (something always comes up and I don't make it to class) since before I saw Dr. C.
He also took the time to go over the alternative treatments many Fibro patients try and went over study results and which ones had shown to be effective and which ones hadn't. I thought that was great. The medication and exercise were the most effective, while alternative treatments showed to have little to no effect. Those treatments were like acupuncture, biofeedback (which I do use) and chiropractors. They do work for those that believe they work, though, so if it works for you, do it.

Anyway - that's the latest update I have. I found a GREAT book written by an internationally-renowned Rheumatologist who is not just a doctor, but is a leading expert in Fibro and his wife also has Fibro. It's called Fibromyalgia - A Leading Expert's Guide to Understanding and Getting Relief from the Pain That Won't Go Away, my husband found it at the library. I started reading it last weekend and so far it's been a great help - I'm actually taking notes! I HIGHLY recommend it. You can find this book at eBooks.com, Better World Books, Books-A-Million and most other book stores. Some textbook shops like Textbooks.com may also carry copies for as little as 99¢.

Another book we've been reading that I've found to be very helpful is Fibromyalgia & Chronic Myofascial Pain - A Survival Manual. I had never even heard of Myofascial Pain until this book. It describes in detail what it is, plus explains how trigger points play into our tender points. You can find this book also at eBooks.com, Better World Books, Books-A-Million and Textbooks.com.

Now, all for me is not at an end. I did have to retire from web development for now, but since I found that there are ways to better my life, I am contemplating maybe going back to work part-time, who knows what's in store for me. I WILL stay positive, I WILL work at getting better, and I DO WANNA GET WELL! There IS hope!

Thanks for hanging in there with me!

Love, Tam

      

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IWannaGetWell.com Website Is Being Worked On

Some of you may have noticed that the "Blood Test Lookup" and "Symptom Checker" are down right now on the website.  I have someone working on it right now to get them fixed and running ASAP.  I apologize for the inconvenience, but it will be fixed soon.!

Thanks!

Tam

A much needed and overdue update

I know that it has been so long since I have shared with you what's been going on with my life, the IWGW.com site and just what's been going on health-wise.  I do apologize.  Just like some of you, I've been dealing with some brutal flare ups, set backs and medical leaves.  But, I have some news.

In 2008, they diagnosed me with "unclassifiable autoimmune" and fibromyalgia.  In 2009, they added Sicca Syndrome.  They diagnosed the fibro and Sicca as secondary conditions.  I was diagnosed with Raynaud's as a symptom of my autoimmune disease in March of 2009.  In 2009 I also began to have Psoriasis in my scalp, down my neck and patches on my back .  At the time, my Rheumatoid Factor was positive with an RF qty of 427 (0-12 is normal).  By 2010 I was labeled with undifferentiated connective tissue disease instead of "unclassifiable autoimmune" as well as undifferentiated Inflammatory Bowel Disease (which I'm still waiting on a new Gastroenterologist).  I believe that's where I left off.

The treatments I've tried mostly have been the Prednisone bursts to reduce inflammation since my "SED Rate" was always elevated.  I must have done 5 or 6 over 3 years.  It was very effective at first, but eventually negative side effects (weight gain and such) began to outweigh the benefits.  When I was initially diagnosed in December of 2008 I was put on Plaquenil which, in my research, is usually the first line of defense for autoimmune.  Because my ANA remained negative, they couldn't diagnose what kind of autoimmune I had, so we basically fought symptoms the best we could.  By June of 2009 the benefits of the Plaquenil were wearing off.  Rather than increasing the dose (I was on a rather high dose), my Rheumy opted to try Rituximab infusions.  In September and October of 2009 we did try the infusions, but benefits were very short-lived and side effects more than brutal.  But when they ran my Rheumatic Panel after the infusion, my RF qty was down to 217.  Sometimes I wonder if I had gotten a few more infusions, would my RF popped up negative?  Who knows.

Anyway - after trips to the Mayo, more doctors and feeling like I was getting no-where, and my Rheumy leaving the practice, my general doctor and I decided to take matters into our own hands until I found a new Rheumy.  He agreed to try me on the methotrexate tablet trial, so I did.  I started the treatment in June of 2011.  I saw great benefit from the treatment.  I gained mobility in my joints, although my fingers continued to ache.  My fatigue was much more controllable most days.  There was a decrease in my migraines.  Over all I just felt better.  Only drawback was the side effects.  I would take my dose on Sunday evenings and would be brutally sick with nausea, vomiting, severe fatigue, chills and fever for all of Monday into Tuesday morning.  So I would lose two days each week to the side effects.  By January of 2012, I decided to stop the treatment and asked about methotrexate injections instead.  There were some discussions in my online support groups that talked about the injections having fewer and less severe side effects.  I was still looking for a new Rheumy, so I made an appointment for a new one at UW Health in Madison.  It took a few months to get in to see her, so while I waited we continued to treat the pain the best we could.

After dealing with over 30 doctors in the 4 1/2 years I've been sick, I finally saw my new Rheumatologist 2 weeks ago.  We discussed my symptoms and history of the illness as well as the benefits we saw with the methotrexate tablets.  After an examination and review of my history, she said that it was her opinion that we are not dealing with "undifferentiated connective tissue disease" but an inflammatory arthritis instead, something like Psoriatic Arthritis with IBD involvement is her number 1 suspect.  I was blown away because that was something that had never been considered.  As far as I knew, all of my doctors from my Endocrinologist to my Neurologist were all waiting for my ANA to go positive.  But with inflammatory arthritis, your ANA is negative (and in two of them even your Rheumatoid Factor is negative).  She re-ran my Rheumatic panel. My ANA is still negative and my RF qty is now 312.  She looked at my fingers and said that it is definitely osteoarthritis in my fingers, but she's suspecting the inflammatory arthritis is what is going on in my hip, back, pelvis, knee, shoulders, feet and hands.  This was great news. 

So now, thanks to my new Rheumy, we have a new plan.  I started methotrexate injections last week and I will also be starting a biologic like Enbrel.  The hope is to stop the progression completely, reduce the inflammation and hopefully give me my mobility back.  I do what I can exercise-wise but when I'm in a flare up it's so hard.  Since I saw my Rheumy, I've worked harder at it.  I want to give myself every chance I can to help her do her job, too.  I bought an air walker which has been great.  I'm also going to have another sleep study done because of the insomnia I suffer from.  She'd like to add a treatment for my severe fibromyalgia, but says we MUST get my insomnia under control first.

I am so hopeful!  I haven't been this hopeful in two years!  There's a chance that I can have an almost normal life.  Of course I'll still have to watch my diet, be active with my exercise and stretching and stick to my medications, but I can live!  I did have severe side effects from my first injection, but we're hoping that will only be for the first couple of injections while my body adjusts.

So, we'll see how it goes.  I'll probably have more blood work done next week because I am full-blown anemic now, still Vitamin D deficient, my creatinine was elevated and there was trace protein in my urine, but that's probably my fault for not watching what I eat.  But - I'm staying positive.  I'm so positive that even if I don't get well right away, I'm getting a start.  I know it will be weeks before I see an effect from my new treatment plan, but I'm going to stick to it.

Thank you all so much for your support and for hanging in there with me.  I WILL do this.  I WILL get better because I Wanna Get Well!

Love to you all!

Tamra

So, it's taken me a while to decide, but on to the SSDI federal appeal

So - many of you can already relate to the hearing denial, and then the denial of your appeal to review the hearing, but have any of you been denied your review because your attorney dropped the ball?

Let me just tell you how upset I am with my representation with AllSup out of Chicago whom I have pushed to friends for representation. I had my hearing for my SSDI in December of 2010 and there was no decision made at the hearing. In January of 2011 I received a notice that my SSDI was denied at the hearing on the grounds that I have MS but am not being treated for it - even though I had many documents from Neurologists stating that I do not have MS.

In April, 2011 AllSup filed an appeal to review my hearing. After April 2011 I forwarded to AllSup many documents that directly contradicted the record and the judge's abuse of authority. These documents were never forwarded to the appeals council and these documents should have granted me a new hearing. My "representation" never forwarded a single document to the appeals council after April 2011. I now have proof of that after a visit to my local Social Security office.

So - I have grounds for a federal appeal which I've decided I will do. Will I get another attorney? I'm not sure. Part of me thinks not after being burnt by one set already, and so many of these social security attorney offices are like mills. But - I'm going to proceed and make a decision later. I'll be sure to let you know how it pans out.

On the plus side, I did add some new links to the IWannagetwell.com website so be sure to check out the new links on the Resources page!.

Thanks for hanging in there with me!
Tam

Aromatherapy Bath & Body Oil for Healthy Skin - A nourishing blend of healing botanical oils that help rehydrate and heal dry skin caused by stress, natural aging, PMS, even cold and flu. Applied after a shower or added to bath water, this light sheer formula containing Calendula, Sesame and Soy seals in moisture, soothes and relaxes tense muscles. Volume: 8.4 fl. oz. bottle with pump











The Lupus Recovery Diet: A Natural Approach to Autoimmune Disease - The Lupus Recovery Diet is a compilation of stories of people who've overcome autoimmune diseases such as lupus, rheumatoid arthritis and fibromyalgia through diet and lifestyle changes. The book includes details of the program and delicious recipes.






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Living Well with Autoimmune Disease - A complete guide to understanding the mysterious and often difficult-to-pinpoint disorders of the immune system--and finding the keys to diagnosis, treatment, and recovery. (Paperback) by Mary J. Shomon

metamit's blog: I apologize for the slow blogging - but it will pick up soon!

metamit's blog: I apologize for the slow blogging - but it will pick up soon!

I'm sorry I've been slow on blog posts, the last few day I've been showing my building for sale and interviewing for office help with 3 Son'. If you are interested in either, feel free to see my Craig' list listings!

Client Care Specialist Needed: http://eauclaire.craigslist.org/csr/2851977766.html

Small Commercial Building for sale in Strum: http://eauclaire.craigslist.org/off/2852487656.html

Thank you for understanding! Now that I'm back to work full time you should start seeing increases soon!

Tam

Visit my Zazzle Shop for 50% off 2-Day on all orders - sale ends Friday!

50% OFF 2-Day On ALL Orders! Fibro, MS, Lupus Tees, Totes and More! Use Code: SWEETSHIPPIN http://www.zazzle.com/metamit



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I Just Updated the IWannaGetWell.com Health Shop!

New look, fresh products and all done with the A Store by Amazon. Be sure to stop by and check it out!

New Items Added to the IWGW ZAZZLE Shop!

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metamit's blog: Even Though It's Been A Rough Week, I'm Doing Something Positive

metamit's blog: Even Though It's Been A Rough Week, I'm Doing Something Positive

Happy New Year’s Sale! 20.12% OFF All Products!

Shop inspirational t-shirts, binders, calendars and more at my IWannaGetWell.com Zazzle shop and save 20.12% when you use code 2012NEWYEARS so be sure to stop by http://www.zazzle.com/metamit and start your New Year with IWannaGetWell.com!

Thanks for your support!
Love, Tam

Look for new posts beginning January 2nd!!!

I am so sorry for neglecting my FB page and blog, I've been on medical leave. Look for new blog posts and FB activity beginning January 2nd - I am going to make myself stay busy with my blogs beginning with the New Year. Thanks so much for your continued support!

Keeping it Together When You're Sick & A Single Mom

So, it's been 3 1/2 years now that I've been sick with this Multiple Connective Tissue Autoimmune, and now Fibromyalgia, Sjogrens Syndrome and Chronic Fatigue Syndrome.  I am still on the Methotrexate and they've upped my dose.  It is helping with the arthritis and arthryalgia and the myalgia - I can walk without the cane now, too.  But, my other symptoms are still there, especially the Fibro, headaches/migraines, digestive issues and the fatigue.  Being a single mom is so stressful and it's making these symptoms even worse.  The last three days my usual headache has worsened into migraines, no matter how many different ways I ask my boys to take it easy because my head hurts.  My older boys; 8, 11 and 15, are good about it, but my 6 year old seems to think it gives him license to scream as much as possible.

Their Dad does see them on the weekends - but he usually stays at my house for the weekend when he's visiting the boys instead of taking them back to his town 2 hours away.  I've offered to meet him half way with the boys but he'd rather come here.  So, I usually don't get a break even on the weekends.  And now my health is worsening.

I'm at my wits end!  I love my boys, but they are killing me with all of this stress.  They don't help around the house, if they don't get their way they scream at me, the 6 year old thinks nothing of hitting me or throwing things at me.  I can't keep up - between the fatigue, stomach issues and headache I'm not well enough.  Some days I feel like just giving up and staying in bed forever, but when you're a single mom that's not an option.  I can't get any help from their Dad - when he's here he leaves the kids' messes for me to clean up on top of his.  I'm so frustrated and I'm sure that's why my head hurts and I'm so worn out.  I try to use the tools I've learned to deal with it, I've delved back into what I learned in therapy, but nothing is working.  I'm feeling the depression and the hopelessness.  I do take my pain pills and my gabapentin 3 times a day, but I'm having break-throughs so on the days I have break-throughs I'm having to take my clonozepam on top of it and it knocks my butt out.  How can I be a good mom when I'm drugged?  I hate these pills.

I see my doctor today so I'm going to talk to him about it, but I don't know what can be done.  My doctors tell me to reduce my stress.  How do you do that when you are a single mom with no family to help?  My friends help where they can, but they have jobs and families of their own.

Lately I can't blog, work on my sites, nothing.  I'm still waiting on SSDI - I did make an attempt to work again but it did not work out.  I get fatigued so easily that after an hour I have to rest.  All of my blogs are behind and I feel awful about it, so that adds to my stress.

I'm so sick and tired of being sick and tired.  It's been 3 1/2 years - how much more can my body take?  I lost my mind last year and had to be hospitalized which I don't even remember, am I on the road to that happening again???  I hope not.  I don't know what would happen to my boys!  Any ideas on how I can change things?

metamit's blog: Bare with me while I move

metamit's blog: Bare with me while I move
Please bare with me on my blogging, I'm still getting unpacked and settled in our new home, and am having a bit of a set-back in my remission. I will try to blog and get my ads up-to-date this week and continue with normal blogging next week.