Hi there, me again!
Just got back from a visit to the Oral Surgeon's office. The mass was just weird scar tissue. No oral cancer here. Wahoo!
On another note, it's Spring outside!
Things are peeking out in my back yard today...
Wednesday, April 27, 2011
Last Thursday, Brad and I headed back down to Rochester for 3 more appointments. The first was with a physical therapist who ran through my daily stretching with me and showed us how to add bits here and there to build resistance and then strength. We’ll have to decide whether we want to continue with check ups there or move to a local PT location once I master the assignments given to me last Thursday - which won’t be any time soon.
The next appointment was with an occupational therapist who taught us lots of ways to conserve energy throughout the day. This was really cool, especially since budgeting energy is one of the core tactics used in flares. Since last week, I have noticed a difference in my energy throughout the day when utilizing some of these tricks! It’s all about making things easier, not because you can’t do it, but because it can be done an easier way that won’t wear you out.
The OT appointment was like a massive “Ah Ha” moment for me, because the therapist answered my questions about the scheduling and planning that I had - that were becoming really overwhelming. He really broke the info down so that it made sense and wasn’t so intimidating.
Our shopping list includes a 1 and 2 pound dumbbell, a light resistance band, a couple of stools and a small stepping stool. All things that will help get me stronger again, and help save my energy around the house.
We were initially going to return the following day for the wrap up appointments from the Fibro Clinic, but the gals and the front desk slipped me an inside tip... that one of Mayo’s top doctors was going to be in their office that day and that there was an opening after my OT appointment. We took it! This appointment ended up being one of the biggest turning points in our journey here.
This doctor was amazing. He began by asking me about some of my symptoms, and then if I had any questions. I told him about the Neurontin, and the tiny bladder hypothesis, the sleep disturbances and all my questions from my new doctor. Here is what we learned...
First, forget the tiny bladder crap. Oh, thank God. I had mentioned that, okay - so if I did have this tiny bladder problem, what would I even do about it? Answer: nothing. He said, regardless if you have it or not, they will tell you to do the same thing - and proceeded to tell me to wait 30-40 seconds when I wake up at night before getting up to pee. Why put your body through more stress? Not only will you most likely fall back asleep because you will be retraining your body to not wake up unless you really have to go, but you’ll stretch out your bladder by holding it in a bit more. Problem solved. I am already waking up less. Incredible. Canceling the cystoscopy.
I have to wonder if this will piss off my new rheumatologist or not...
Next, I am a unique Fibro patient. I am special because I have these super-powered senses in a flare; specifically smell, hearing, feeling temperature. This puts me in category of individuals who benefit greatly from the following techniques: meditation and reading about [my own] suffering. What?! That’s what I said too. Reading about how people throughout time have dealt with suffering; philosophy, enlightenment. Perfect! That’s right up my alley!
I knew that Dr. Amazing was...well, amazing when he said, “There’s a reason why people have been practicing these things for thousands of years.” This from one of the greatest medical facilities in the world. I love you. I almost said it. In the car on the way home Brad said that he thought I was going to ask him if he’d be my primary doctor right then at that moment. Like, “Will you marry me?” except, “Will you be my Doctor?”
Dr. Amazing went on to re-explain to us the ways that the brain takes emotional or physical trauma and preps itself for the fight or flight response. In rare instances (aka Fibromyalgia), all it takes is one major [good or bad] stressor; like a work issue, a loss, or planning a wedding, to trigger that fight or flight response to get stuck in the “On” position.
Fibromyalgia is not as much of a physical syndrome as it is a nervous system condition. At some point in your life, you’re set up just perfectly for it. It’s whether your particular body is destined to get stuck in the “On” mode or not; and then, it’s just a matter of time.
I mentioned some of the “traumas” in my past, both emotional and physical. He said that my experiences are much like most other patients of his. Amazing.
We also reviewed the ways that the brain creates pathways, which is fascinating to me. The saying “Fake it until you make it,” is actually the fibro doctor motto because your brain doesn’t really know the difference. It just learns the new path.
Our brain needs to be taken back to that peaceful and normal state; to be reminded of that pathway. This is how you turn the fight or flight response off. We can train our own brains to choose that path with these methods. Meditation and enlightenment. I was floored. An incredible day.
We left with two books to read before bed, first “The Mindfulness Solution to Pain: Step by Step Techniques for Chronic Pain Management,” by Jackie Gardner-Nix. Next, “Man’s Search for Meaning,” by Viktor Frankl. Dr. Amazing was also funny; he warned me not to read the introduction by Frankl because it is “god-awful boring.”
I am beyond thrilled. Excited to share more next week on my status!
Monday, April 18, 2011
I almost forgot to let everyone know about my oral surgery! As you may have guessed, it was no big deal - since I had almost forgotten about it. I find out next week what it was, but until then the spot seems to be healing and is only a minor nuisance.
The Neurontin seems to be fine. Although I haven't been sleeping well the past few nights. I felt pretty great last week. To note: I didn't take my Methotrexate injection last Sunday. This also was the first full week of the Neurontin, and cutting back Trazadone. A lot of different factors; it will be really interesting to see how I feel this week after taking my MTX injection once again yesterday. Brad and I are really intrigued with this. Keep you posted!
The major news for today... I am now on medical leave from work. This happened almost out of nowhere last Tuesday; today is my first day. When I was at the Mayo Clinic, the doctors there were very adamant on me closely following the treatment plan outlined for me in order to get healthy again. This consists of following a daily routine that includes a lot of stretching, small bits of walking, meditation, education about the disease, and at the top of the list, fun. The Mayo Clinic wants me to do things that make me happy and spend time with my friends and family. Research shows that fighting illness is more successful when your heart is happy and you feel enveloped with love from family and friends.
In my last post I didn’t mention the conversation that I had with my new Rheumatologist about this. I told him that my employer needed updated FMLA documentation. I explained that currently, I have been working from home due to an accommodation that needed to come to end end soon. For lack of better term, I needed to either “shit or get off the pot.” They would be willing to let me work from home for another couple of weeks if the goal was to either return, or go on short term disability (medical leave) at the end of that time. I told him that my work wanted to help me and was very supportive of my treatment. They are willing to support me however I need to get me healthy again. This is a true statement.
Dr. Sassy, of course said “Well, if you can do your job just fine from home, then why can’t you just do that?” I told him that I can’t do it forever, and my job needs me to make a decision. He asked, “Well, are you ready to go back to work full time?” “I can hardly make it to the end of my driveway on a bad day,” I replied. He responded, “Well it sounds like your work is willing to let you take time for your treatment. Maybe it wouldn’t be so bad to take some time for yourself and kick this thing.” That was it.
The following day, I spoke with my HR contact about this, and it was then that I made the decision to begin the process right away. So, I was out on Wednesday for my surgery, then had 2 days to get my affairs in order and that was it.
My [specific] job is held for me for 11 weeks. After that, they can keep me in mind for other positions, however would need to fill my position. Short term disability is a total of about 24 weeks; then long term disability kicks in, which is another 24 weeks or so. I’m basically on “Maternity Leave.”
It’s really surreal. This week, I need to read over my materials to put together a schedule based on the template provided for me at Mayo. Thursday, we head down for a personalized physical therapy session to create a program for building my strength. We also meet with the Fibro Clinic to review my program.
I start very slowly. The key is to not “over do” it, and not “under do.” I follow the stretching routine for 20 minutes in the morning and begin taking a 5 minute walk, working up to longer walks as I get stronger. So far, I have the hardest time with the stretches and light exercises that require me to lift my arms at the shoulder, and my legs at the hip. Those are my weakest muscle groups due to the Dermatomyositis. My hips hurt a lot when I do the leg movements since the Fibro seems to fester there.
I then fill in the day with light activities; again, starting very slowly. I chose gardening as one to start. I will also start having different projects each week to fill an “activity” time slot. On that list are things like, photographing and listing new items for my Etsy shop, organizing my craft room, etc. Once that stuff is done, and no longer a “stressor.” I can do things that I love like sewing & photography. I also have a social slot to fill. That can be coffee with a friend, or a phone chat. As I get stronger I might be able to go for a walk, or visit a shop. My activities can expand as I get stronger too. I can do other some of my other loves, like painting and baking.
One thing that is very important on my treatment plan, as well as for my life, is having a Flare Plan. This is sort of like an emergency plan of sorts. I can most likely expect to have flares from time to time for the rest of my life. It’s making sure that I am prepared to handle them, and that I know what to do to make them go away faster. One of the biggest components here is staying positive. This plan will include people to call (since when in pain and scared, I tend to regress), things that make me happy that are restful (a funny movie, or favorite book) and the most mild form of physical treatment (much like what I am beginning with now) to keep my body moving without hurting myself.
Another important aspect of this is surrounding myself with friends who love and understand my new lifestyle. Maybe we had plans for a shopping day, but need to change it to a movie at home due. Knowing that my friends are supportive of my condition and are flexible will help me keep relaxed. The Mayo recommends keeping your plans during a flare to keep your spirits up, just alter them so that you can still enjoy that time and keep your body comfortable.
So that is my homework for the week! I don’t have anything else to worry about other than getting to my appointments on Thursday. It’s a pretty neat set-up, although I am still adjusting.
I fought this for a long time. “Why can’t I work? It’s all I have left,” I thought. After hearing it from doctors, friends and family for almost a year, I finally see that I am never going to beat this until I make myself the priority. I will get back to my normal life sooner if I take time to focus 100% on healing. Take time for me. I deserve it.
It’s weird that when you’re outside of a situation, it’s often so much clearer. Last year, one of my best friends was very ill. Her doctors wanted her to take a medical leave, but she insisted on continuing to work. She would tell me, “It’s all I have left.” I would tell her all the time, “You need to focus on yourself, to get better. Why don’t you take this time to heal?” I never understood why she couldn’t just let go and let herself be taken care of. Until now. Less than a year later, I did the exact same thing. I thought, “This is all I have left of my life.” When really, why did I have to sacrifice everything that I loved for the one thing that only created more stress and frustration? You need balance. Now I see that you should never sacrifice the things that make you happy. If you do, you have nothing left to keep your heart happy which makes healing nearly impossible.
I avoided this for almost a year, but I am thankful that I finally accepted healing. Making myself the priority feels good; I can’t wait to see where we go from here!
Tuesday, April 12, 2011
Monday, April 11, 2011
Today I met the new Rheumatologist. I don’t know how else to describe how I’m feeling about it other than, “shocked.” Not necessarily in a bad way; I think that my brain is just completely overloaded.
I walked in to the appointment ready to present him with my Mayo plan and my past treatment, which I did. I explained that I fully believe in the Fibromyalgia diagnosis and that the FM Clinic was very enlightening; I wanted to begin working on their plan, take the drug that they recommended and begin weaning off of my current “Fibro” drug, Trazadone.
I wouldn’t want a doctor who was a pushover; I would choose a doctor who had strong beliefs about their practice and who was passionate about medicine. I didn’t however, expect this doctor to be one of them. He is extremely confident. I can’t decide if this is annoying or comforting.
He mentioned that he just presented at a conference on Polymyositis (impressive). When I mentioned that I had pictures of my hands in a flare, he got giddy and asked if I would bring them in. He asked me what source brought me to see him; I answered, “Minneapolis/St. Paul Magazine” (Top Doctors Issue). He replied, “I pay them to put me in there... I’m kidding!” I didn’t think that was funny.
In a nutshell, he challenged me. That is a totally new experience for me. I will be starting on Neurontin which is an anti-convulsion medication that is also used to calm overly active nerves (linked to the nervous system). It aids in pain relief and can help with sleep. Neurontin is a sibling to Lyrica.
I will then slowly wean off of the Trazadone - an old-timey antidepressant that proved ineffective; however was found to successfully balance serotonin levels in a way that combats Fibromyalgia and aids in sleep. Not quite doing the trick for me though.
Eventually, we will also taper down the Tramadol (pain medication). Until that time, he instructed me to take one Tylenol with each dose. His secret pain weapon. I later learned from the Pharmacist at Walgreens that Tramadol was actually intended to pair with Acetaminophen, but since insurance doesn’t cover it, they don’t advertise this beneficial pairing. FYI.
Next step (this is where things got weird), I head in to have a cystoscopy (bladder screening that sounds awful) because he thinks that the root of my Fibro is that I may have a birth defect called Interstitial Cystitis, aka tiny bladder due to scar tissue continuously forming on the bladder wall. He is gung-ho on this ever since a Fibro patient of his 35 years ago had it and was miraculously cured once treated.
His theory is that since I wake up often because I have to pee, that I might have this tiny bladder problem. Since I wake up all the time, I don’t get a good night’s sleep which is a common cause for Fibromyalgia. In fact! He didn’t want to make any changes to my medication until after this bladder study. That’s where the newly assertive/aggressive Maren entered and put the kibosh on that. I said, “I might not get in to this new doctor for another 2 months. I need to work on reducing my pain and start to sleep better NOW. If there’s something wrong with my bladder and fixing that can magically cure me of Fibro, THEN we can adjust medications at that time.” I won. Thank God.
Honestly, the whole bladder theory sounds like a bunch of shit to me. Three of the medications that I take cause dry mouth (we’re talking, stranded-in-the-middle-of-the-desert-thirst 24 hours a day) and so I seriously drink about a gallon of water a day. Constantly. If he’s right, I will fall out of my chair right in front of him. Whatever, check my damn bladder. It’s practically the only thing left that hasn’t been poked and prodded at.
He did convince me to compromise on the Neurontin as opposed to Lyrica though, simply because he didn’t think that my insurance would cover it. I panicked about this at first, until I got home and reviewed my notes from my FIbro Doctor visit... oh thank goodness, I had written that Lyrica/Neurontin were one in the same. I recall that the other Fibromyalgia medications didn’t work with Methotrexate (my Dermatomyositis drug), so I was really paranoid. I practically interrogated the Walgreens Pharmacist Jack-Bauer-style on whether any of my many medications would interact with the Neurontin. Taking as much medication as I do really freaks me out; enough in fact, to remind Brad at night to check to see if I’m breathing if he wakes up at all.
My assignment is to have my medical records sent to him from my previous Rheumatologist and from Mayo. I go back to see him in a month. I am praying to God that this medication works along with my Fibro Plan from Mayo so that somehow I won’t have to do the bladder thing. I just Goggled it; it's worse than I thought! shudder.
It might not sound like it, but I am super pumped about trying out the Neurontin in conjunction with my Fibro Plan from Mayo. Brad and I did the stretches together last night and it felt great to move. I felt so happy afterwards; the first steps to getting back to ME!
Wednesday I have my gum surgery. I will probably be in a pissy mood, so perhaps I may wait a few days to let you know how it went! Haaha!
Tah tah for now,
Sunday, April 10, 2011
The past two weeks have been a complete whirlwind. As I had previously posted, our first trip to the Mayo Clinic was end of March; the latest visit was last Thursday the 7th and Friday the 8th. I would say that I’m about 50/50 at the moment.
The first appointment on Thursday was a Fibromyalgia (FM) screening. Although there aren’t any blood tests that you can take for a diagnosis, there are a battery of signs and symptoms that doctors use to create a diagnosis. Unfortunately, there are still doctors out there who use Fibromyalgia as a “catch-all” term for any number of things that they cannot explain. These doctors are behind. The Mayo Clinic, one of the top medical facilities in the world strongly believes in Fibromyalgia as a serious condition that demands research and specific programs.
Needless to say, I had every single diagnostic characteristic. From pain in all “tender points,” flu-aches, tunnel vision, dizziness and super sensitivity to light, smell, sounds, touch; to cognitive complaints: inability to keep a thought, forgetfulness, short term memory loss. It was truly amazing to learn the majority of my most dreaded symptoms are in fact, not Dermatomyositis (DM), but Fibro. Obviously, the diagnosis was confirmed.
Our next appointment was with the Rheumatologist that has been overseeing my care at Mayo. This is where the “meh” part comes from. To be quite frank, this guy was a dick. From circling around, avoiding a specific answer to my questions, to mentioning that “We need to move along since there are others waiting” (when he was the one running 45 minutes behind). He was overly positive, certainly a “Go on and live your life” type; which is great, but I came to him for answers to the tough questions. I wanted honesty and facts.
He quickly reviewed his notes from my previous visit, and although the Fibro doctors entered all pertinent information into the system for his reference, he relied on my account of the FM appointment earlier that day. Then he told us that it looks like the DM is improving and that all my blood work indicates that it’s doing great - although my blood work has ALWAYS been pretty great (with the exception of a few inflammatory markers and the ANA - which indicates the presence of an autoimmune disease). It’s the biopsies, and MRI’s that show muscular edema and inflammation. No mention of that. I was so flustered by his shitty attitude that I didn’t even get to that question before I just thought, “Screw it, this asshole isn’t going to help me.” Good thing that our first day alone at Mayo cost $3,000 (before insurance), plus 2 nights in an overly priced hotel, 4 days of missed work, and little to report from the DM side of things. Add it to the list; they’ll be getting a letter.
Dr. A-Hole did however, tell us that the pain and long list of symptoms that I was talking about were not DM but rather FM, and sent us to the Fibro Clinic. This was good. Major news.
Here’s the medication plan. The FM doctors recommended a drug called Lyrica. I am to continue taking the Methotrexate (MTX), begin Lyrica and wean off of Trazadone. Eventually, taper off the pain meds as well. When all is well, attempt to back off of the MTX, and if needed, switch to a much safer drug called Plaquenil. The goal would be to take Lyrica (or another Fibro drug) and Plaquenil for life, unless I can get to a point where I can eliminate one or both of those two drugs.
Only problem is that they did not write any prescriptions for me. Tomorrow I have an appointment with a new Rheumatologist. I am to walk in, give him the super quick run through of my past treatments and symptoms, and the Mayo’s recommendations (since I will not have their reports in hand yet). I’ll need him to write me new prescriptions and also update my work FMLA forms for work. Nice first visit. The first thing that I am going to ask him though, is whether he can be my overseeing doctor for both DM and FM. If he says no, the appointment’s over.
Day two was much more valuable for Brad and me. This was the all day Fibromyalgia clinic. The Mayo Clinic takes a very holistic approach to Fibromyalgia, which is neat. The staff with the FM clinic were great. Brad and I took home over 30 different booklets on the different aspects of Fibro and ways to help control it, and also 3 DVD’s and a Guided Imagery/Meditation CD; even information on how to find credited resources online. One of the booklets was for family members, which I am sure will be appreciated.
Fibromyalgia is a syndrome that affects your parasympathetic and sympathetic nervous system. What happens is that your brain creates pathways when it learns pain. For reasons still unknown, Fibro patient brains essentially “mis-fire” creating signals that the body should be in pain when there isn’t technically anything wrong. Since there is no “cure” for Fibromyalgia, the medications used are often to trigger different parts of the brain, “tricking” them into operating differently. The holistic aspect of treatment is to calm the body and teach the brain to learn new pathways.
Some ways to calm the body are through deep breathing techniques, meditation, light exercise, stretching, yoga, cognitive therapy, the list goes on and on. I was really happy to learn that I am “allowed” to stretch and practice yoga; it feels really good to stretch and I love yoga. I was pissed when I had previously learned that I needed to stay away from those things.
There aren’t any special diets that will cure FM. There is no such thing as a cure. Like Dermatomyositis, the symptoms may get to the point where they seem to be in “remission” for some time, but they could still occasionally flare. The symptoms could be flared much more often. I’m shooting for the better one!
Our bodies have a natural instinct to slow down when there is pain. I naturally began slowing down a few years ago, when my muscles started to get tired from both the DM and FM. Last June, when I was diagnosed, my doctor told me to stop nearly all physical activity as to not aggravate the DM. This is unfortunate, since the theory that movement will aggravate inflamed muscle tissue is really an old wives tale (info learned from Dr. A-Hole).
Our muscles then become de-conditioned very rapidly. Since there is a great amount of pain, and more often than not, this muscular de-conditioning; getting active again is a delicate matter. This is why the clinic helps create a [super baby-steps] program for getting back to a place where you can begin to heal with the techniques aforementioned. It’s all about conserving the bodies energy; not over-doing, not under-doing. If you over-do it, you end up paying for it for days to come. Under-doing it isn’t making any progress, but rather going backwards. I am a constant over-doer. After being in pain for 10 months I am to the point where I can’t stand not doing anything for myself and I just push through pain. This is why I crash and burn after every weekend, and often at the end of each day. Not good.
I will begin occupational therapy locally at some point, although I will first have an assessment at Mayo. This is one of the many things that I need to discuss with my new Dr., whoever that may be. I’m hoping that it will be the one that I meet tomorrow, so that I don’t have to wait until May to go back to Dr. Grandits and begin adjusting my medication. Please-oh-please-oh-please!!
One thing that I found to be extremely interesting is that the Fibromyalgia patients brain takes pretty much any negativity and runs with it - turning that “thought” into pain. Despite a few cranky blog posts, I am a very positive person. This applies to more than just me, though. The Mayo Clinic actually recommends telling your friends and family to NOT ask you about your symptoms and pain. The holistic plan focuses so highly on positivity, not only am I supposed to try to ignore it, so are you! Any comment or thought that makes the brain have to go to that “unhappy place” triggers that nervous system mis-fire which results in physical pain. Take-away: if you’re going to ask me how I’m doing, make sure you’re asking me how I am actually doing, not my disease. This is awesome because I hate talking about it anyway which is the whole reason for this blog! I promise that I won’t think that you don’t care.
So I need to select a couple of the items of the FM list to begin working on. Stretching and walking begin right away. One major component that was discussed was stress. The example that they gave was that you have X amount of stress for each day, both good and bad. I need to decide where I am going to use those pieces of stress. If you are using all of your stress on “bad stress” at work all day, getting home and going straight to the couch because you have no stress left for good things; then you aren’t giving anything to yourself. This has been my struggle all along. There’s nothing left for me. I have maintained my job for the past 10 months, but MY life has been reduced to nearly nothing. The priority hasn’t been me. I have a lot to think about...
Brad was ecstatic the whole two days, and the whole way home. I understand the reasons that he was so excited; I was happy about those things too. But I cried the whole way home. I don’t know if it was mental exhaustion, hopelessness or a feeling of defeat. I know that I had put so much hope on the appointments and I was let down, which unfortunately overshadowed all of the good news.
At the end of the day we had difficulty scheduling additional appointments, which led me to feel like they weren’t trying to help me, which led to me remembering Dr. A-Hole and how he hadn’t really helped me, which then led to a complete meltdown. Good thing Brad took, “For better or for worse” seriously.
We head back in two weeks for the physical therapy assessment, and a wrap up to the Fibro Clinic. Tomorrow is the appointment with the prospective new rheumatologist. Wednesday, I have surgery to remove the tiny mass in my gums. Sweet.
I am looking forward to the adjustment in my medication; I’m just so consumed with worrying about whether this new doctor will be the right one for me or not that I can’t think about anything else. Thank God that appointment is tomorrow.
As I dig in and learn more from the abundance of materials from the FM clinic, I’ll share. Although I was secretly hoping for a magic pill that would fix everything, I look forward to working to get my life back, slowing getting back into doing all of the things that I have missed in the process. I am so blessed to have a partner in life to take these steps with me. I also have an amazing group of friends and family who I know will be patient and supportive as I work hard to get myself up and running again.
In the meantime, I have some fun distractions: a visit from an out of town friend, ABOM, spending time with some brand new little friends; last week my college girlfriends surprised me with a visit full of treats, chatting, games, and hysterical laughter. Perfect. Brad and I might even shoot for a date up the street for ice cream in the evening! I might even be walking my little doggies sometime in May.