SON-OF-A!!!

Warning: This posting contains a lot of bitching

I am starting to doubt my own strength.  I feel like I have learned to handle and awful lot; but wondering if there might be a point where I could burst.  I might be there.

Methotrexate (MTX), the intravenous drug that I take to shut-off my immune system, has some side effects.  Aside from the common dizziness, nausea, etc., MTX also boasts “Mouth Sores” which is why it is often partnered with a Folic Acid supplement, which I also take.  About a week and a half ago I got one; unlike any gross thing I have experienced.  I swore that I needed stitches. 

Side note:  When I was 18 I had my wisdom teeth removed.  After waking up bawling my eyes out from the anesthesia, I went home only to awake in the night to the most excruciating pain in the world, coming from all 4 spots where my wisdom teeth had been.  I ended up having dry sockets in all 4 holes which made the “Wisdom Tooth Experience” a 100% shitty one.  A few months later after moving into my college dorm, my dry sockets returned.  Thank goodness I chose a local school; my Dad had to come and pick me up every other day to go in to have my sockets packed with gauze and clove oil.  Every couple of years since then, I get tender at the same tooth removal site.  Never too big of a deal, but I always thought that maybe it hadn’t healed properly. 

I went to my dentist on Tuesday (who is fantastic, by the way).  I told him about the MTX, and about the sporadic tenderness in the past following my wisdom tooth surgery (they were all impacted).  After looking way back in there for a minute he said, “Yes, you’re right, something isn’t right there – it almost looks like a scar tissue of some sorts.  I haven’t seen something like that.”  He followed by giving me a topical anesthetic and poking it with a little ball tip instrument.  It’s a mass.

It could be one of several things; scar tissue that continues to get aggravated due to its location and tearing repeatedly, a tiny piece of leftover wisdom tooth that is trying to get out but can’t due to the scar tissue, or oral cancer.  They want to remove it right away.  Son of a bitch.  Just when I was thinking, “I could use a few more things to worry about.”

I headed down to the Oral Surgeon’s office for a consultation.  I was scheduled surgery next week, but they said that I was going to be really sore.  I said, “I can handle sore;” but I’m pretty sure that this actually means that I’m going to want to die and only be able to gum on pudding for a week.  I did reschedule though for the 13^th.  I'll need to stop taking MTX the Sunday before because it's a drug that prohibits healing.  I also didn’t think that it was a good idea to head back down to the Mayo in search of my answers to life with a sore mouth.  It might be distracting.

Counselor Tuesday, Surgery Check-In Wednesday, Mayo Thursday & Friday, New Rheumatologist on Monday, Oral Surgery on Wednesday... oh yeah, and work every minute that I’m not at an appointment.  Keep up on all paperwork, get files to the right doctors, contact insurance, check on billing.  Call the bank, call HR, mail shit, pay things, AHHHHHHHHHGGGGGGGG!!!  This is where I feel the “bursting” element.

So there you go.  Just when I thought that I might be getting my shit together.  C'est la vie.  This is the first time that I have honestly had this kind of "Why Me" attitude.  It's one that I despise in others but can't seem to help it.

You know, throughout the past 10 months one thing has become more and more evident.  No matter how great a Doctor or Dentist may be, too many of them aren’t going to give a crap about you unless you really push the envelope.  Now, I have recently had the experience of a Doctor and a Dentist that have gone above and beyond for me; completely and 100% amazed me by their attentiveness and determination to get answers.  This however, only draws a great shadow on their predecessors.

Let’s have some examples, shall we?  First, there is the Doctor who nearly killed me twice by prescribing me lethal doses of Ritalin and Adderall.  One causing me to drop 15 pounds from my then, 115 pound frame in a matter of two weeks, the latter raising my heart rate to “Heart Attack Levels”; both due to major overdosing.  In both cases I was taking enough medication for a 300 pound man.  Infuriating.  

Next, there is the doctor who just decided to call the spots on my hands “Warts” and pass them off; looking into it further may have let me completely avoid the need for this blog.  Oh yes, and my Dentist who put a crown on me with Nickel in it, after I mentioned that I was allergic.  This caused me to have bloody inflamed gums around the crown for over 3 years, when he finally agreed to switch it for me.  Mind you, I was not the informed patient that I am now. 

How about my primary Physician who listened to me complain about persistent pain in weird places for years until I demanded that she figure out what it was.  She sent me to a Neuro-Specialist and an Allergist who said they didn’t know what was going on and dismissed me.  Those pains are called “Fibromyalgia” and could have been easy to diagnose if someone would have just taken the time to work with me.  Much of these experiences occurred when I was much younger and didn’t realize that I had a say in my treatment.  I would give anything to have learned that, 15 years ago.

So that’s it for now.  I am again, terribly frustrated and frankly, pissed off.  I'm too tired to cry, but I could probably go for some of that, too.  For the first time I’m feeling really justified for feeling angry about my circumstances and not worrying about anyone else.  I am genuinely pissed off.  Maybe this is healthy... which reminds me of Ken Jeong’s character, Dr. Kuni in Knocked Up.  He and Seth Rogan are in the hallway arguing.  When they’ve resolved he says, “This is good, this is healthy,” and now I’m giggling.  I feel like a freaking crazy person.

I've got to go to bed.

Peace

M

Update 3.28.11 - Mayo Appointment

Today was my appointment at the Mayo Clinic.  I don’t really know how to even start.  It was not what I had hoped for in terms of answers, but I will get them.  

My first appointment was at 7:30; I met with two doctors to discuss how my symptoms began and what my current treatment plan has been.  I had an exam where I got poked everywhere that it hurts, and had to exert my strength in all the ways that I cannot.  That was a little discouraging.  

We then began to discuss the disease and all the things that I have already been told a million times, “There’s no definitive treatment,” “It’s trial and error,” “We have to experiment;” also discouraging.  The doctors explained to us that Dermatomyositis is attacking my muscle tissue, which causes weakness, fatigue; but it is Fibromyalgia that is causing the intense pain.  Lupus is no longer on the table.  Thank God.

The main doctor explained his theory of DM, that you begin with the auto-immune process which creates inflammation which creates the symptoms.  His method is to then work backwards, since in the end, there isn’t anything that you can do to change your auto-immune system which is why the disease is for life.  

My doctor likes to begin with Methotrexate, then Azathioprine, then Cellcept (Mycophenolate) and a list of many more drug options to try down the line if I found that each didn’t work for me.  I have already tried Azathioprine; interestingly enough, he wondered if I gave it a fair enough try.  I am currently taking Methotrexate, he didn’t seem to want to move me off of that just yet.  Before I could ask him about his thoughts on taking a partnering drug he had already suggested starting on a steroid to alleviate symptoms.  He recommended Prednisone; although none of this is final until we get all of my lab results back for analysis.  

Prednisone scares the crap out of me.  This is odd, because I am already taking a drug so toxic that if I got pregnant while taking it, my child would probably have three eyes and a tail.  When I asked him what the risks where and he said, “You name it,” in a chipper voice.  “What?!” I snapped back.  “Just name a part of your body,” this was hard for me to understand; is this conversation really happening?  He then rattled off some of the more common side effects, osteoporosis, high blood pressure, increased bruising and risk of infection, weight gain, water retention.  

I asked, “If I’m already taking a drug that lessens my body to heal, and this drug could increase infection, am I doomed if I get hurt?”  He said “No,” but I didn’t feel any better.  Honestly, I think that some of the more superficial risks scare me the most.  First off, I have always been very proud of my [almost flatlining] blood pressure.  I’ve already dealt with pain, I’ve had surgery, I been violently ill from the medication...but now I could gain a bunch of weight so that I feel bad about myself?  That’s awful!  Feeling good about me has been one of my biggest strengths throughout this challenging journey.  Now I might wake up in the morning looking like I ate 6 bags of potato chips and drank 2 bottles of wine in the night before?  Son of a B!!!  I can handle most anything that you throw my way, but don’t mess with my self confidence and comfort level.  I can’t even go grocery shopping for food; how am I going to go and get all new clothes?! 

Prednisone is a very effective, quick drug.  The thought would be to take it to get my symptoms under control, and begin weaning off as quickly as possible.  What I don’t understand is how I would be okay without taking it once I start.  Does it round up the symptoms so that your body can focus on stabilizing the immune-system?  Ugh, I have SO many questions...

The doctor then told me what I didn’t want to hear.  We would not get a game plan today; we wouldn’t get all (or any, really) of our questions answered.  We need to get all the labs back and analyzed before they can make their recommendations.  This broke my heart enough that my eyes welled up with tears.  I completely understand why this needs to happen, and I fully support them in gathering as much information about me as possible before making a decision.  I just wanted to leave with my next step.  I wanted to leave with a prescription for something to help my pain.  

We return next week for a program on Fibromyalgia and for our results/game plan.  A week is nothing in the grand scheme of things, but it feels like forever when you’re sick, so desperate to get your life back.  

In all reality, I know that treating this disease is all about “experimentation.”  He mentioned that many people get frustrated feeling like “Guinea Pigs.”  I said, I know - I have felt like one.  He also clarified that the Mayo Clinic likes for people to have regular, primary care doctors and that they can be “Consultants.”  I should use my regular doctor for prescriptions, etc.  I said that I don’t intend on returning to my former Rheumatologist, and that conversation went nowhere.

I can only hope that when we return next week that he will be ready to help me.  That we can have a game plan, and that I will have my chance to ask my 3 pages of questions, Calibri 10 pt.  

So, here come the tests. 

Today’s tests:

10:00 Blood Tests - to check my levels and a few more tests that I hadn’t had before.

...I thought that I was a goner... I hadn’t eaten anything since seven the night before and they drew about 20 vials.  I made it though, and then proceeded to pound one of my Orgain shakes and all my pain medication in the waiting area.

11:00 Chest X-Ray

Dermatomyositis attacks the muscle tissue, which can also affect the lungs.  I have been losing my breath easily; so this is to determine if I have lung involvement or if it is simply a result of the sedentary lifestyle that I have been instructed to live for the past 10 months.

11:40 Electrocardiography (EKG)

DM can also have heart involvement.  I have been having the symptom of a sporadic and heavy heartbeat.  This test was to check my resting heartbeat to determine if my heart my be at risk as well.

1:00 Pulmonary Function Tests

As I mentioned, DM can have organ involvement, and a concern for me is my lungs.  This series of tests was sitting in a little glass booth, with my nose clipped like in a cartoon; to blow air out and inhale in various patterns.  This will determine if I have any lung weakness or damage....or if I’m perfectly fine!

Next week...

A 1 1/2 day Fibromyalgia Program will assess the severity of my Fibromyalgia, give me a game plan and also teach me about pain management, and life with the disease.  

We will also have our “Game Plan” meeting with the Rheumatology Doctors.  This is when we can really dig in, ask all of our questions and get a sense of what the next steps are and what to expect.

We’ll be staying in the same hotel, which was posh and cozy.  I truly felt comfortable and at ease  there; weird for a hotel.  Our room was beautiful, bed cozy, big plush bathrobes and all.  Brad and I ordered room service and watched a movie the night before.  As everyone has said, all of the people at the Mayo are fabulous, and at our hotel too!  I really enjoyed chatting with the nurses and listening to funny jokes from the doorman.  Little things like that help keep you upbeat when heading into something scary, or unknown.  

It did feel good though, to both Brad and I, to hear other people having our same conversations.  Overhearing other people discuss some of the same challenges, the same struggles trying to get answers.  It is not that I would wish this on anyone, but to not feel so alone is a magnificent feeling.  It’s easy to forget just how good it feels.  It’s also nice to not be the only one walking at a turtles pace, or getting help up out of a chair.

Oh, I almost forgot to mention that I agreed to participate in a Myositis research study.  Hopefully it will be enlightening and that I might even get to reap the benefits of the research in my lifetime.   At least it might help someone else someday.   My Mayo Rheumatologist is involved, and will be studying my data for my treatment as well. 

I will be calling my “new” Rheumatologist this week to let him know that I’m going to be coming in hot!  My appointment with him is in a few weeks and I want him to be up to speed on my most recent findings.  Hope he’s ready for me!  

So that’s it.  We had a safe trip, a lovely stay, and are glad to be home.  I’m not sad or upset; maybe just a smidgen...  I understand the need to know enough to determine the best course of action and I deeply respect that.  Just another week.  

A million thanks for my loving friends and family for keeping us in your prayers and for letting us know that you were thinking of us this today.  I know that I was a little surreptitious of the actual date, but I appreciate any well wishes just the same!  I will post as I learn of any test results, and of course, after our next appointments.

I am just so, so thankful for all of the love and support.  I just can’t thank you enough.  

Lots of love, 

Maren

Me again...

Hi!

I almost forgot to give a Serta Memory Foam Topper Update.  I can’t tell if I like it.  Brad likes it a lot.  I don’t wake up I as often as I did before, but I do wake up.  I get really stiff.  Brad usually sleeps on his back, but I’m a lifetime side-sleeper.  I think that adjusting to sleeping on my back all the time is my most difficult adjustment.  You can’t really sleep on your side, contrary to the little Tempur-Pedic Logo…  she’s on her side!  I can fall asleep that way, but I end up on my back.  We’ll see – I am coming to the conclusion that I’m not going to be comfortable on any bed until my pain is under control. 

So maybe posting the entry yesterday was a bad idea.  This isn’t sarcasm…seriously.  I think that my “Minnesota Nice” makes me afraid to say how I really feel or what I need.  I don’t like making people upset. 

I shouldn’t have said anything about feeling forgotten, because the people who don’t care also don’t read this blog.  It was never my intention to come across as ungrateful, cruel.  I wasn’t complaining about my friends; but rather noting that throughout this experience, it is my true friends have been shining lights in my life. 

Deep down you always know those people who truly have kind and loving hearts.  Those are the people who help you up when you’re down; they are there no matter what mood or day you’re having.  They love and care about you no matter what.  Those people are real friends, and those are the people who read this blog.  I thank you for that.  I have been so blessed in my life to know so many kind hearts; it fills me up with joy every day. 

Maybe I should have never shared how down I felt?  It was never my intention to come across as cynical, again ungrateful or that I wasn’t thankful for each and every day.  I didn't mean to shove reality in anyones face per say.  I was done with the “Angry” phase months ago.  I think that it is mostly the frustration that gets me down, rather than where I’m at emotionally.  When going through testing, it can be hard to make it to the result days to find out what the next step is; it's like a cruel scavenger hunt.  But I am always happy to be part of each day.  Every day I laugh at my silly little doggies and giggle with my husband.  I might chat with a friend; I admire the snow, a warm breeze.  I daydream about fun things to do when I’m feeling better.  I think about things to do this summer, floating in the pool, sitting in the shade with a magazine.

Many people have asked me if I pray.  Yes, I do.  I pray in bits and pieces throughout the day.  A “Thank you” here, and a little “Thank you” there.  If I wait until the end of the day, I fall asleep shortly after, “Dear Lord.”  I have always had a relationship with God.  Today one of my best girlfriends sent me a verse, Philippians 4:6-7 “Don’t worry about anything; instead, pray about everything.  Tell God what you need, and thank Him for all He has done.  If you do this, you will experience God’s peace, which is far more wonderful than the human mind can understand.  His peace will guard your hearts and minds as you live in Christ Jesus.”  I’m good at saying “Thank you,” now I just need to work on asking for what I need.   

This could certainly be why I haven’t found peace within all of this.  I have been so rattled.  I'm in unmarked territory.  I long for that feeling of confidence that only sporadically presents itself to me these days.

Perhaps I shouldn’t have written about how I feel physically, or how anxious I am for this appointment, either.  I don’t want people to feel bad for me, I just want to get better; but I meant what I said about being worn down and fragile. 

In the past 10 months I have gone from a scared and uninformed patient, to an informed advocate who is not willing to undergo any more experimentation with my health.  It’s time to fix it.  "Even if there are only 3 in a million people with this disease, I can only assume that many of them come here; so fix it.  Give me my life back."  This is the pressure that I put on the appointment; but behind that I am still the patient who is scared.  I am worn down from the journey here.  I just want to know that I’ll get to feel like me again.  This is the kind of thing that makes me feel like I’m depressing.  Not that I always feel depressed, but that I want more than this.  I don’t want this disease to run my life anymore.

I can’t really think of any other questions to answer or things to clarify.  Just a little more waiting.  I will ask God for help.  I am thankful that I’m almost there and that my health has kept me fighting this far.  I am so thankful for my wonderful husband and for my two little pups; they take sure great care of me.  I’m thankful for all of my family and friends who support and love me.  I am excited to share some good news about my health again!   

I'm already starting to let go of the fear and feel excitement.  I'm almost there :-)

Lots of love,

M

Almost There...

With my appointment at the Mayo Clinic just days away, I find myself just waiting in sort of a slump.  The past few weeks have been hard. 

I’ve been sitting on this entry for a week wondering if I was brave enough to post it.  Sometimes I wonder why I even write on such a personal level; it makes me vulnerable.  Maybe my hope is that I might gain some support, or help someone in my shoes.  Maybe I might assist someone in understanding this rare and shitty disease.

I need help focusing my energy on healing; keeping positive and healing thoughts in my mind.  My counselor has been helping me with this.  I’m constantly distracted.

Sometimes I’m afraid that people will forget about me.  Sometimes I feel forgotten.  I might not be able to go for a walk or out to a bar, but I can still laugh and have fun.  I’m still in here.  

I don’t get many visitors.  I don’t always get out of the house to meet friends on Saturday morning.  I've been working from home since January.  I get lonely.  I stress out trying to keep up with my friends lives.  I sit and worry that I’m the one who’s forgetting people.  I wonder who this blogs 1,300 page views are from, since only a handful of people tell me that they ever even read it.

There are however, those people that just pop up to send me a quick note to say “Hi” and that they’re thinking about me; leave a comment to check in, or just let me know that they’re there.  Just knowing that there is one more person on my cheering squad, it means everything to me.  It’s what helps me get through these tough times.  I am so grateful for those special people.  I hope that I can always be as good a friend as they are to me.

I know that in the past people have gotten upset by entries of mine that have been depressing.  I don't even think that I have even been totally honest about how I’ve been doing.  I AM depressing.  

I'm in pain almost all of the time, even though I take painkillers three times a day.  Today I had a hard time lifting up my fork, my legs shake when I walk down the stairs.  This is terrifying and humiliating for me; something that I don't usually share with anyone except for my husband.  It's hard for people to hear that stuff; and it's hard for me to admit, too.  So I understand how not knowing the full story could effect ones reading of this blog.  Maybe no one knew that I was that depressing.

99% of the time I really am optimistic and cheerful.  I am realizing though, that you don't get the support that you need when no one knows that you're hurting, or when.  

I don't mean to be rude or complain.  I'm not mad at anyone; I just wish this would all go away.  "Normal Maren" isn't such a downer.  She is not a complainer or a crab.  She's almost always happy and she's fun.  I miss her a lot.  

I did chop my hair off last week; that feels better.  I also got a new fancy toothbrush that has me obsessively feeling how clean my teeth are.  Yes, these are exciting things for me these days.  I can laugh at that.  

My most exciting news though, is that some of our dearest friends had their first baby this week.  I couldn’t be happier!

No matter how depressing I think that I am, it never changes how I feel about others.  I may be a little more emotional or sensitive, but it never takes away from my excitement and joy for other people.  Sometimes it is hard to watch everyone’s life move by while sitting at home sick.  I’m never jealous or resentful though, I promise.  

So now I just wait, just a few more days.  All the paperwork is done, records submitted.  It seems like the closer it gets, the harder it is to wait.  

I have lists of questions, goals, scenarios and examples.  So many things that cannot be answered until I get there, but feel like they cannot wait.  I know that the past 10 months have been great for gathering more information about me and this disease; but it’s really hard for me to look back with a positive attitude.  To me, those 10 months have been my lowest moments.  When I reflect on them I think of sadness, fear, isolation, pain and frustration.  One of my many fears is that this next step will take another 10 months.  

I miss my friends, going out to dinner, taking my dogs for walks.  I miss feeling like myself and having the energy and freedom to do whatever I want.  My life is so much different than it was this time last year.  Although I was sick, I didn’t know it; I wasn’t where I’m at now.  

I thought that in the days before my appointment that I would be elated, ecstatic.  Instead, I’m scared.  I’m actually starting to get quite nervous.  Suddenly I fear that I might be unprepared.  I have such high expectations of this appointment expecting a solution in return.  What if they can’t help me? 

I have been told that the Mayo Clinic doesn’t stop until they get answers; but I’m worn down and fragile.  I don’t know what I would do if they let me down.  I don’t know how much more testing I can take.  It’s getting up in the morning and going through the motions; just trying to get through the day so you’re closer to that day when your test results are in to tell you the next step.  I hate living like that.  I want to get back to being excited about each day, savoring it until the last hour awake.  Being at peace, feeling rested; to feel that again would be divine.  

So for now we just wait.  Just a little bit more.  Patience is a virtue that I have never totally grasped, but I will work on it today.  I am thankful that I’m almost there and that my health has kept me fighting this far.  I am so thankful for my wonderful husband and for my two little pups, they take such great care of me.  I’m thankful for all of my family and friends who support and love me.  I look forward to the day when I can share some good news again, and I will make it to that day!

Lots of love, 

M

Happy St. Patties!

May your troubles be less...

           And your blessings be more...

And nothing but happiness come through your door

A friend sent me this today, and it meant a lot.  Although I'm more Scottish; I've got a little green in me too.  I can certainly pull off an Irish accent much better! 
Thankfully, you don't have to be Irish to enjoy today. 

Happy St. Patties!

                                  heehehe!

Oh god...do I need to be worried about this?

Great.  


Here I am, blissfully excited about getting my new mattress topper so that I can be in less pain when sleeping; yet now it's going to kill me and my family?!  s.o.b.


Has anyone ever heard of legitimate research done regarding urethane in Memory Foam?  I can't seem to find any valid research with a quick Google search:


The hypochondriacs view:
softpedia.com
The environmentalists view:  
Treehugger.com


M