all that comes to mind is "update"

I have entered some kind of a void phase. When it comes to how I'm doing, I have had a lot of things in mind, but every time it comes to actually speaking on it, it is just somewhat void. I can't think of anything that accurately explains what I am trying to say. Or by the time I get ready to type or talk or explain, I get exhausted at the thought of it and decide it is not worth it at that moment. Perhaps this is part of the process of acceptance. I am sure it is, seems like a normal step anyway. I envision stepping out of this phase and eventually getting to that "thriving" phase despite the rheumatoid arthritis. It is a process I know. Days like today make that seem more challenging; I had to move my mouse to the left side of the keyboard again. My right wrist and elbow are screaming at me.  

The Humira is working, it gives me 2-3 really good days per injection so far.  And I got my new swimsuit in the mail (massively on sale for end of summer!), so things are looking up despite my right arm in general. And, I am officially 31!  Hooray to be DONE with the medical onslaught of 30.  A lot of great things happened last year, like my first juried art show acceptance, lots of great family time with my brother & fam, lots of ministry speaking opportunities... all in all, a linear timeline is the best way to go. I love the memories, but would never want to repeat this last year :)

grief

If you know me well, you know that I am not one to shy away from my "darker" expressions.  Darker like intense grief emoted in a healthy way, of course. That is the difference between me today and me 8 yrs ago.  8 yrs ago I didn't have the maturity to deal with the intensity of pain, grief, sorrow, loss, betrayal.  It felt like my life situations were too "adult" for my 22 yr old self. God made me as a pure ball of joy, mixed in with quite a bit of sunshine :)   I was not made for this current world and the intensity of how evil it can be, how broken it can be.  I am forever thankful that God walked me through that growing up time to handle it to where I am today.   Which, brings me to the topic of grief.... grieving is so healthy, even if it raises fears in ppl watching the person grieving.  I have a wide array of emotions about this current physical struggle with rheumatoid arthritis.  Can I grieve the diagnosis, the brokenness of my physical body, in a healthy and beneficial way?  Absolutely yes. That is what I am endeavoring to do right now.  I want to, Have to, express the grief or else I feel stuffed, confined, very discontent and not heard or understood.  I have a huge desire to be heard and understood, for a litany of reasons, but needless to say it is my #2 after the need for love.
            So how am I going to express, "emote"  (someone is the daughter of a counselor ;)  ) this grief you ask?  Tonight it is painting my nails black. Before you roll your eyes, realize how cathartic something like painting nails or dying hair can be. It is a physical expression of internal feelings that brings no physical harm nor is permanent... excellent!  Think back to 100s of years ago. When someone died, the family, esp the wife, wore black. Not just to the funeral, for days and weeks until in some situations her father told her it was time to put mourning clothes away.   That is deep expression of a painful loss... it is hard to pretend all is well when you are wearing all black.  It is hard for others to gloss over life when they see you in all black. Why are we so afraid of grief today?
             I do not want to be in so much pain every day. I do not want to have needed and have had 3 joint surgeries in less than a year, still needing another but dealing with daily pain so I can live somewhat "normally" for a while.  I do not want to worry about infections every time someone coughs around me because I am injecting myself with a substance that kills my immune system.  Do I have hope in God? YES.  Do I believe in His sovereignty, His love, His light, His healing abilities?  YES YES YES YES.  Do I, as the human God made me, need to grieve this pain and loss of some life ability?  Yes.  What would Jesus do? Cry.  He cried, appropriately.
           So my nails are black. And I am walking through this storm with God... more like He is shielding me, with His arms around me as this "unfair, unfortunate, devastating and undesired" hurricane continues to pound against us.  He could command it to cease the instant he gave the thought, but.... I want faith that is beyond the disciples in the boat with the storm. I guess God knows that!

The simple life

My calendar used to be so full, I would schedule down time in blocks as an activity. I would go crazy otherwise. I love one on one time, and I love group hang out time. I also hate missing out on things. I remember thinking, "Meagan, this is crazy, you are exhausted, why are you pushing so hard and over committing?!"  Then the fear of there being fun out in the world that I could be a part of, and I am missing out would creep in.  That this time might be THE time something exceptional happens, and I would have missed it!  That this time could be the time I meet Mr. Right, or the next best amazing thing to change my life.  Maybe even, that this crazy busy schedule will work to keep me so distracted, my reality actually will magically be different.  I remember a few times a year and a half ago telling myself point blank- sleep is for the dead.   Then I hit burn out.  I crashed HARD. Right before my foot surgery, I pulled myself out of every activity and resigned from all positions except volunteering to be a door greeter at church.  I went from 100mph to about 15.   Shortly after was the foot surgery, which required me to be out of things functionally.  I thought, wow God, look at how amazing your timing is!  I thought I would get a good break, "rest up", and be ready to hit it 100mph again as soon as the foot healed.

That was then.   Fast forward to now. 

Life is so different now! Its not better or worse, it fits how I feel physically so in that way it is just right. For the first time I think in my life after 5th grade, I am not in any leadership role, I am not on any committee, I am not a regular volunteer of anything.   And, Praise the Lord! I don't have the energy to keep up. I have about 2 hours of activity (any activity) in me a weekend day, then I need a 2 hour nap, and to rest the rest of the day.  Weeknight evenings, I have to push really hard to make myself do anything. I never feel "up to it", I am not sure I ever will after working a full day, until I go into RA remission.  But even so, there are a few things I want to do, and I think coming at it from the KISS perspective (urban dictionary that acronym if you don't know it), it doesn't have to be overwhelming. Right now that is the Wed night Ruth Bible study class.  Last week my joints were screaming at me, and I had to go right to bed after work. I am hoping, though, that is not my norm.  Going out on one weeknight during the week doesn't seem to be too much. And, I kinda like the simple life. Very simple.  My hobbies are IMAGO art (once a month for 2 hours) and this Ruth class. That's it, but I like it. It leaves room for the random once in a while get together, AND, I feel like I am able to get into both and do both well. 

The days of late night dinners, movies at 9 or 10pm sun nights, all day outings on Saturdays, concerts, Miller Outdoor Sunday activities, ministry work on weekends, sports seasons, all might be something that, when I reach remission, I could do. Today, I am trying to just go to my singles Bible study class tonight. That is all, because I went grocery shopping earlier, and needed a 2 hour nap to recover.  :)   It is slightly ridiculous, but, I did have a good run at trying to do every single thing I possibly could at one time back in the day. Now my no muscle must be strong, and the yes to come after careful consideration.

gluten free is not for me

I have no idea why, but when I have baked items made from gluten free flour (tapioca, almond, gluten free wheat) I get the worst migraine! I don't know if there is a filler generally used that I'm allergic to, or what but I am not doing the gluten free flour baking stuff.  I made the sugar free tart things w fruit jam, and in spite of a very odd "clinging" or "thick stringing" the cookie had when I broke one apart, it tasted ok.  Then came on the same migraine and stomach ache and general oh my word I want to cease right now feeling.  Happened to me also the last time I tried baked goods I made from gluten free flour type items. (that time i think was tapioca flour).  Anyway, not for me I guess.  But just because I am not doing gluten free doesn't mean I won't be changing the diet drastically of course. I am still going to eat a diet that is of whole grains rather than white flour, and not have all that much of it. yay protein, fruit and veggies. And no refined sugar, refined sugar seems to turn to poison when I eat it! an addictive poison!

Anyway, I came up with a very good non-inflammatory meal plan with enough variety to repeat it each day for a while. So I will try it out and see how it goes!

Today has been one of the more difficult days, pain wise, but even more challenging is the fatigue! oh my word I am SO tired. I wouldn't be surprised at all if someone came along and diagnosed narcolepsy! I could sleep anywhere anytime. except in the middle of the night, of course ;) that would be too easy  :)     Tomorrow I give myself the second Humira injection!  They said 2-4 weeks to work, come on 2 weeks!

time to nap now

New diet

Just got back from Whole Foods. In my cart was almond flour and gluten free wheat flour.  I have no idea if I am wasting my money or not, but I have decided to get on the massive bandwagon and try the whole gluten free concept. At least in what I bake at home!  I am going to try a new recipe with one of those flours, same recipe as sugar cookies but without sugar (and without any other type of sweetener), and with a dab of all fruit jam in the middle :)   sounds good to me!

I think its too early to know what triggers more RA pain verse what keeps it somewhat at bay.  Trial and error! I have already cut refined sugar by about 80% of what I used to have. And I have taken out almost all artificial sweeteners... it hasn't been as hard as I remember it being when I went sugar free for a few year a while back. Maybe its all about the motivation! Pain is a big one.  So is this crazy all encompassing fatigue.  I took a total of 5 hours in naps today ;) haha   Praise God that I have a life situation where I can have weekends off!  I am also doing the whole walk a mile thing at work every day (in air conditioning!). Not doing it on weekends. I might melt in the sun. I want to start stretching more, and once the humira kicks in a bit more, I want to start hand weights again.

BTW! Did you know whole foods sells zero calorie sodas without artificial sugar, they use Stevia!  Crazy brilliant.

"Just because" is a good reason

I had a rough night last night, and was super tired, so I decided that I needed to take a vacation day today. I wasn't feeling ill last night, just I the normal joint pain and fatigue, but I was getting overwhelmed with the responsibility, reality and fears of RA. I decided to voice all my fears and frustrations in an email to a friend. One thing I have been noticing about me is that I am truly very joyful and optimistic, but in that, my emotions get dismissed that need to be processed!  So, I wrote my fears without adding explanations or conditions to each after, like how I know God says other wise, or how I know its not logical, or how I know I can't predict the future.  All true things, and, I still feel this way, so I just wrote.

How flippin cathartic.  I highly suggest writing all your fears, frustrations, angers, and not allow yourself to qualify them right after. Just sit in it to feel it and process through it!  

Anyway. So, just because I wanted a break in general, I took today off. I decided what I needed after a night like last night was chocolate chip waffles, lots of sleep, and a manicure.  I made chocolate chip waffles (and enjoyed every bit of the "bad for joint inflammation" sugar and refined flour in them), slept about 4 hours worth of naps, and got my nails re-shallacked.

I rounded out tonight with going to see a dear friend teach a new 7 week class on Ruth. Love love love.

I feel much better.  My world really isn't ending :)   Lots of unknowns, but I know its not ending.

anger management

I'm starting to get mad at little things. 

One being how much steroids can make a person freaking sweat! It is almost super-human how much I can sweat in a chilled 65 degree store.  I think I might have scared the Barnes and Noble worker today.  Of course I was in the self help-medical isle, shouldn't have been too much of a shocker.

I tried to get my mini spa set up in my room. I took the table and foot stool out of the boxes, and did the 1-2 step assembly, and then needed a nap.   I have all these boxes that stuff has come in, small stuff mailed in big cardboard boxes.  I can't valet waste them.  I am going to offer an exchange to my roommate, I'll buy her lunch if she will take it all to the dumpster.  

Last week I went back to the singles Bible study I was in before my first foot surgery 10.5 months ago.  I have been looking forward to some social activities coming up... Paradise pier in Galveston next weekend, and antique shopping in Old Town Spring in 3 weeks. After needing a nap putting 12 screws into pre-drilled holes this afternoon, I am seriously questioning my ability to last at both of those outings.  What if I get so tired I can't drive back without sleeping a few hours in my car first? Do I even have the guts to become a loiterer? I'm afraid that if I carpool, I will have no place to nap if it hits me and I need to sleep right then. There is always a picnic table....

There is a bruise on my thigh the circumference of my thumb. Its from the humira injection I gave myself on thursday afternoon.  Still blue and purple.  It doesn't really hurt, it just annoys me that its there. 

I've said this before, and it applies again... I know it is dangerous to pray for patience, but it is even more dangerous for me to not have any right now. 

Reality bites

The honeymoon phase of getting a diagnosis is ending. Tonight I have had my first real cry over this new aspect of my life.  I don't know what I had expected, that maybe I would have the diagnosis of RA but the pain would of course stop, my life wouldn't be all that impacted, not enough to inconvenience me, and I would press on just adding one more health acronym to my list.  Why do we always assume we are the exception to the rule? Its like a twisted Pollyanna way of looking at life.  Maybe its what we have to do to stay emotionally together until we instinctively somehow know we are able to now deal with it, with the reality of the situation.

My realization that life will not just include a few more naps started Friday night.    I went to dinner with my brother and fam for his birthday, and though tired, was fine most of the night. I picked up my 1 year old nephew a few times, and played with my 3 year old niece some.  After I got home and went to bed, I woke up multiple times in the middle of night with my shoulders and elbows of both arms very stiff.  This morning I woke up and went to lunch with a wonderful friend who also has struggled with an auto-immune disease. Talking to her did not bring up anything surprising, but every once in a while I would pause and the words that we were actually saying would sink in. The ways we both have experienced pain and tiredness, and the same rheumatologist my friend had recommended. This isn't a game. It isn't a movie, or a book.  This is real life. I can't walk away and say 'ok, its been fun seeing what life was like with rheumatoid arthritis but i am tired of it now, lets move on to something new.'      

Old habits must die hard bc even though very tired, I decided after lunch that a shopping trip to Michaels was a good idea. Once there, I decided to get a cart even though I was going in for one thing, never mind that I literally could not push it with my right arm! I shopped for about an hour, got what I normally would want to get (ie 7 heavy candles on clearance, 3 large baskets on sale, 7 glass jars for an idea I have, 4 new canvases in a pack, a backless frame 50% off for the art show in March, and candy.)   I was regretting being in the store and not home in bed where I knew I needed to be, and by the end I was struggling!  I forgot that I have to get the heavy stuff INTO my car.  I forgot that I then have to get it INTO my apartment!  I didn't make it that far, it is still sitting in my car. I better not park outside without a cover or my candles will be a ball of goo.

All this, and I was ready to just. go. home.   And then I remembered my prescription that I needed to get at Kroger, plus the essentials of milk and bread.  I was so frustrated, tired, hot, in pain, and had to still run this dumb errand. By the time I got home for real, I put the groceries away and fell asleep for about 3 hours.
Tonight I have felt this now typical bleh malaise that doesn't seem to lift but for short amounts of times here and there. I didn't have a bad night, just watching tv mostly, but as soon as I got up to go to bed it felt like the weight of all the small realizations today piled on top of each other and added up to a ton of bricks. I started crying out of frustration rather than physical pain. I am actually going to have life changes because of this.  I might have a day where I am home alone and can't do something.  Do I make friends with my neighbors now so I can go over there for help if needed? (I am typical big city apartment tenant, I have no clue who any of my neighbors are).  I know to take it easy, and in the future have to stay home at times and not go out. How will I get my people fix? I don't have a husband to give me automatic community (assuming we would have a healthy relationship).

This is so vain, I admit. I have this rheumatoid nodule on the top of my hand. It is quite small to everyone but me, I'm sure. I don't know if those go away. My wrist looks like I banged it, but I didn't, it just has a bruise color that doesn't fade and under it hurts like it is on fire. What if I get those RA hands that the sweet elderly people have before I am out of my 30s?  What if more than just my feet and jaw joints really do get degraded and deformed?

I realize I could what if all day.  And I know it is not helpful for anything.  But I'm a girl, of course I have these thoughts, and I want to stop ignoring them.  So, in processing the very normal fears that come up- here is what I will do if those challenges come.  If I get deformed hands, I will rock them. Crooked fingers and swollen knuckles doesn't mean I can't get my nails done, or moisturize.     If I need more surgeries, I will take them one surgery at a time (and we are so starting with my left foot as soon as I can stand to have a broken foot again).  I will practice writing with my left hand so it can be seamless to keep working if my right hand continues this way. If I need to stay in bed but need a ppl fix, I do own a cell phone.  When I need to take a break from picking up my niece and nephew, I will sit on the ground and let them climb all over me.  Life doesn't seem quite so depressing right now.

a letter I found online for RA newbies :)

This letter is such an encouragement, I had to share!  I LOVE the freedom that comes with accepting life on life's terms. God is in control- He has always been adoringly sovereign over me, nothing changes.


--------------------------------------------------------------------------------------------------------
A letter to all the Rheumatoid Arthritis "Newbies"
My heart ached as I remembered exactly what it was like to be a newly diagnosed rheumatoid arthritis sufferer, or a "newbie".  So with all those emotions running through my mind I have decided to write a special letter for all the newly diagnosed sufferers out there, for I too have felt the same way.
Dear newly diagnosed fellow rheumatoid arthritis sufferer,
I know that the many emotions and all the unanswered questions running through your mind right now may be overwhelming.  You may feel like you are all alone, left with an incurable disease to bear for the rest of your life.  You may be wondering what you have done in your life that was so awful that you deserved the daily pain of this crippling, debilitating disease.  I know, because I too was suffering with these emotions and unanswered questions.   Please know you are not alone, you are never alone!
If you are newly diagnosed there may be some things that your doctor has not prepared you for.  You may begin, if you haven't already, to experience a period of depression.  Please know that this is very normal.  There is no need to punish yourself for these feelings for most of us have been through this, and there is never any right or wrong way to feel in regards to this life changing diagnosis.
For some of you this diagnosis may, at first, be a relief to your long struggle with trying to receive a diagnosis.  Many of us have felt that relief before as well, after spending so much time trying to convince the doctors that there was, in fact, something wrong with us.

The depression itself may be overwhelming.  There may be days, weeks, or months where you want to just lie in bed with the covers pulled over your head and wish that everything was all right, that you weren't sick.  When you start your new medications and your treatment plan, please know that you may not find relief from the medications right away, as some take 4-6 months to take effect.  It is normal to find frustration in this and to wonder that if the doctors were faced with this same disease, could they handle waiting 4-6 months for some type of relief.  There will be days when you wonder how you can ever make it another day with this pain.  There will always be days when you ask yourself this.  You will make it through this.   We have all felt this same way with the depression, the uncertainty, the unanswered questions, and the loneliness, but I am writing this to reassure you that life does not end here.

It gets easier
While I can tell you that life gets better, and living with this disease gets easier, I cannot tell you when or where that will happen for you.  So instead, I will provide you with hope.  I call you my fellow rheumatoid arthritis sufferer, but what I prefer to call you is my fellow rheumatoid arthritis fighter.  That is what will bring you hope.  Fighting this disease will bring you hope.  You may wonder how it is possible to fight an incurable disease.  I too have asked myself this same question after being bombarded by family who told me that I had to fight this disease.
This, my fellow fighter, is how you fight rheumatoid arthritis.  You start by getting out of bed.  That may sound very simple to a healthy person, by with rheumatoid arthritis, this is never a simple task.  You may not be able to get out of bed due to the depression.  You may not be able to get out of bed due to the pain.  Or you may not be able to get out of bed due to the fact that you were up all night because of the throbbing or maybe because of the side effects of your medications.  But to fight this disease, you first must get out of bed.  Please know that there will be some days when you can't get out of bed.  The pain may be too unbearable, or you may just need a day with the covers pulled over your head.  That doesn't mean that you are not fighting rheumatoid arthritis, it just means that you need a day, or two, or three to rest in order to have the strength to fight again.
The hardest step
Now the next step in your fight against rheumatoid arthritis is the hardest one, and it is also one that you have to figure out on your own.  The next step to fighting rheumatoid arthritis is to live.  It's as simple, yet extremely difficult, as that.  The hardest part of this step is that you must find your own reason to live your life, and live it well.  If you aren't at the point where you can do it for you, then do it for the ones around you who love you.  Do it for the ones who have brought food to your bedside on one of the days you were just too depressed to get out of bed.  Live for your spouse or your kids who may have seen you give up so much, that they feel they may have lost you forever.  Then, you can do it for yourself.
Severe rapidly progressing Rheumatoid Arthritis
You may ask how I dare tell you how to live your life or what to expect.  I only tell you these things out of my past experience.  I have had rheumatoid arthritis since high school.  I didn't experience severe pain until I was 23 after the birth of my second son.
 After that I spend two years of my life on a mission to get a diagnosis, even after my physician told me that I had absolutely no medical reason to have any symptoms.  At the time of my diagnosis I was told I had so much damage in the joints of my fingers that I would not be able to pursue a career as a court reporter and I was only three months short of getting my bachelors degree.  I have lost out on a full year of my kids' lives as I lay in bed.  My husband has had to feed me, dress me, and he has seen me spend hours screaming in pain until my voice no longer sounded human.  I am now 29 years old and have what many rheumatologists have called severe rapidly progressing rheumatoid arthritis, and I am living well and fighting this disease.
You are not alone!
I have chosen to write this letter to you, as well as share a little of my life with you to let you know that you are not alone.  I want you to know that I too have experienced depression, and I still have unanswered questions.  I have felt the hopelessness and the uncertainty of my future.  I have wondered what I have done to deserve this disease, and I have wondered how I could possibly live one more day with the pain.
But I have chosen to be a fighter.  It is not a decision that came easily to me, or one that I made right away.  I wake up each morning and I know that if I can just get out of bed, then that is one ugly slap in the face of rheumatoid arthritis.  Yes, I lost all the plans I had made for my future, so I made new ones.  No, I can't do all the things I could in the past, but I feel deeply, laugh louder than anyone, and am constantly forcing myself to get out of bed.  It's not easy, but it does get easier.  It's not always fun, but it is worth it.
Rheumatoid arthritis can only take from you the things you let it.  Only you can decide when enough is enough.  We are all here for you.  All of us fellow rheumatoid arthritis fighters have felt the same way.  Maybe we can be the ones answer some of your unanswered questions.  Maybe we can provide you with hope.  I am a strong rheumatoid arthritis fighter, but together we are stronger and we will make it.  You never have to fight this disease alone.  If there are days you feel like you just aren't strong enough to fight, give us a chance to help or to fight for you.  Living with rheumatoid arthritis is a battle, but not one I am prepared to lose...are you?

ra

This is going to be the short and sweet version of a blog entry-

1- pretty much all my joints started giving me trouble 6 weeks ago.

2- I got the diagnosis of rheumatoid arthritis today.

3- I am actually very Thankful for this diagnosis.  All the issues coming from one stemming reason feels so much more manageable, not to mention with the new medicine that I am on, perhaps I could have full relief!

 I am not frustrated at the diagnosis because my joints were already becoming "deranged" in my feet and jaw, not to mention the pain I have been in the last month or so. How much better to have an answer! I have gone back and forth on if I would post on this actual diagnosis but-- how can it encourage anyone else who has it if I keep it to myself?  And honestly, the effects of a joint disease aren't secret- haha, did you see me with a broken foot for 8+ months?  Ha.  Anyway, I figure why not post about it, write even about struggles, and victories, and be honest with how God is using it.  Maybe someone could be encouraged!

roller coaster

At some point repeating the phrase "I can't wait for things to get back to normal" becomes the new normal. I try to keep my expectations in check, surrender the outcome to God, remember the bigger perspective.  It is not easy. Eh, all that means right now is that I am starting to get exasperated about my jaw.  The arthrocentesis was this past Wed.  It went as expected, I woke up as expected, I have taken all muscle relaxers and steroids as instructed.   While I was out during the procedure, the surgeon got it open. He said it opened with a very loud pop.  On my own, I have yet to be able to get it open again.   exasperated. 

Despite a lot of muscle relaxers, that always have worked till now, there is a painful point where it will go no farther. ((I have forgone the Vicodin after 3 pills this round, advil instead, because weaning my body off the side effects of Vicodin doesn't sound like a fun add into this mix)).  I have put ice packs as instructed, then heat packs as instructed, stretched it, tried to push through the pain, and I cannot get the joint to extend.  I asked the surgeon about this on Wed night when he called to check on me. He said it was not unreasonable for it to not open the night of, because he had put a lot of fluid in the joint which needed time to absorb, and the muscles were swollen/sore.  He said to stretch it, use heat, and it should open.  If not we will talk about it Wed at my follow up.    

Its Sunday night, I have one more muscle relaxer to take, tomorrow morning, and then I am done with the 3 a day sets.  I have 3 more steroid pills to take, 2 tomorrow and 1 Tuesday, and then I am done with all the prescribed medicine for this last go-round.  I am gearing up for the possibility that it will not open by Wed morning at my follow up with the surgeon, and that I will have to "give it time".  Or, have arthroscopy.  Either way, my hope for everything to fall back into place like it was before even the foot surgery this fall is gone now. I have decided to give it up.  I am simply readjusting my definition of what normal is for me now. This last year of extracting out, stripping out, so many of the activities I would run around doing has become a shift of how I function rather than a season of rest. Maybe I am not made to handle a lot of stress in my life, so my new normal is to live in a way that reduces as much stress as possible (like taking naps, and only having 2 new things on the calendar per week, and keeping my apt clean). Lord knows I have had my absolute fair share of serious stress in life, maybe I tapped out.  

One thing I know is this, and the surgeon told this to me quite clearly!...  My jaw, as I have been living, (ie chewing normal food, crunchy, chewy stuff etc) has lost 25 years of life.  I am not joking.  He flipped a lid when he saw my age, and repeated over and over that I am too young for this, looked me right in the eyes and said "ppl come in with where your jaw is right now when they are in their mid fifties. I do not know if your jaw will last your life."    So something has to change. I HAVE to redefine my normal. Not just in eating only soft food, but in taking it easy even when I feel like I could handle more.  God's got this.

American Revolution and Fair Trade

One more day until Monday! I took a couple vacation hours Friday bc, no surprise, the migraine got that bad.   If this arthrocentesis/arthroscopy doesn't work, I am going to ask for different migraine medicine. It helps some, but obviously I still can't perform normal life while locked. One day at a time.

Something came up in conversation Friday night and this afternoon- how satan works by getting us to feel defeated.   I realized something new this weekend...the spiritual fight isn't the action or situation in and of itself always, warfare is getting us to feel defeated in it.  I realize that is a somewhat obvious statement but its a breath of fresh air to know that relief does not have to wait to come until the situation is better, it can come in the middle of the situation by renewing my mind on what is really going on from an eternal perspective- and the power I still have given to me. 5 illnesses can't take that power away, but I can give up and let it sit there unused.

Anyway, today was a great day of surprises! I went to a DAR 101 (Daughters of the American Revolution) class with a friend to become more acquainted with what DAR does and how to be involved. I think I have found my new hobby!  They have all these committees to be part of, and have enough activities to fill your calendar if you wanted.  I am going to of course just go very slow, the last think I need to to jump into involvement and have my body fizz out on me again!   Once a month meetings and 1 committee sounds fun to me.  Love new hobbies.               I also went to a fair trade type of party at a friend's house, and got some awesome stuff from Ecuador, Uganda, and Ethiopia I think.  Love it.  While there, I ran into a friend I haven't seen in a while and as we were chatting she reminded me of this Bible study she goes to that I had meant to check out. So tomorrow I am going to go and see if its a good fit! I have been looking, so glad to have at least a plan of sorts.

So, all in all this has been a great weekend, and only one day till Monday's oral surgeon consultation, and I will hopefully get the surgery date I am praying for (asap basically) with full medical coverage. That would be Such a load off!!!! We will see!

Resume activities!

I got the news I was praying for today! The foot is 100% healed. YAY!  It hurts, but I have read that it can take up to a year to feel back to normal (and the "do-over" surgery for the midfoot joint was just end of May). Now that I know its not broken I feel like I can deal with any pain of "recovery" because I am not making it worse!  The dr even said I should get feeling back on the top of my foot and toe (I can't feel it right now because they had to move the nerves over to get to the joint).  I don't mind, it is ALL worth it when I realize the arthritis pain I was having.  Each time my left foot hurts I get a reminder of what the right one used to feel like, and it makes all the frustration of this process much less frustrating. :)

I started doing intentional calf exercises today.  I'm not sure how long it takes to repair atrophied muscle, but I have 5 inches to regain! I'm starting relatively slow, just walking and isometric exercises for now. I wanted to break out the Dance Dance Revolution, but that will be more like a long term goal :)

I have almost made it to Monday! Praise the Lord.

And so it begins

Tomorrow kicks off a 2 week dr marathon, and I am praying for good news all around!  I see my orthopedic surgeon tomorrow afternoon for my possibly Last round of xrays on my right foot!   Thank goodness I take diatemaceous earth which supposedly gets rid of any radiation in your body, 33 xrays on just the right foot since Oct!    I am hoping for the best news which will be "Meagan, your foot has healed and you may resume normal activities", aahhhh music.    Fingers crossed.   I was supposed to stay in the boot till tomorrow for extra caution, but I didn't want to have my first steps without the boot hurt after the appt and me not know if thats normal or something wrong, so I have been boot-free since Monday. I really don't think 4 days will make or break it. ha.

I am taking the next 2 weeks day by day, but I wish it were monday the 6th at 2:30 already.  I cannot Wait to have the consultation with the oral surgeon.  I had to leave work early yesterday because the migraine got really bad, and that while having taken 2 of the prescribed pain pills.  God is so awesome, my boss happens to be out on vacation at the moment, and I have long finished all the assigned items to my desk. So I have very big down time right now waiting for my boss to return monday.  Perfect, because either the migraine makes me unable to concentrate at all, or the pain pill makes me very sleepy.  Love how He works things out timewise like that. :)   All the major hard-hitting Dodd-Frank items have been assessed as well already, so I am ok on that end too.

The problem I am having with the tmj lock is that it seems to make the inner-ear pressure worse the longer time goes by.  So while it used to be a matter of pain management, its now dizziness and ringing. I tell ya, I am mucho excited to be done with 2012.  Good riddance. I realize we have 5 more months, but I see the end of the tunnel, and I am hoping I never repeat a year like this one.

Change

Yesterday early morning, I took my dog back to the vet because she had the oncology report.  The results were that the cancer was in her lymph nodes and leukemia (which is why she was so severely anemic). She had 2-4 weeks to live.  :(   The worst decision I have ever had to make was smack in my face.  Chemotherapy was an option, but not a good one because of the anemia. It might extend her life 1 yr, but no guarantee plus the complication of being an older dog.  Steroids were the next option, but on them she still only had 4-12 weeks.  Thursday night and Friday night, Suzy had been struggling to get her breath.  She would wake up and cry, and try to get a new position to breathe, and then pant like it was 100 degrees in our apartment.  I couldn't take her suffering at ALL, let alone 4-12 more weeks.


So I told the vet that the decision I came to was to put her down. :(   Goes against every fiber of my "mother" instinct, as much as a human can have one to a dog.  Horrible.  And yet I know, and was reassured by so many at the vet's office, that this was the best choice for Suzy.  I can't imagine her decline of organ by organ failing, the pain, the struggle for the absolute basic activities.   I kept apologizing to Suzy, not because I was sorry for the decision, but I was just sorry for the flippin situation.  Doing the loving action can be the hardest thing on earth to do, and this is my dog, not even another human, let alone the God of the universe letting His son die. Blows me away looking at it from this new perspective.


I cried hard in my car after for a while, but then had my little niece's 3rd birthday party.  :)   I didn't wear makeup, or even go outside by for 2 minutes, but I was there, and I loved on her, and it was the best thing possible after such a hard moment the hours before.   When I came home yesterday evening, I threw all of Suzy's stuff away.  Just seeing it around the apt made me feel like I would fall apart.  I made a CVS order of photos, picked them up and made a photo album just of Suzy.  :)   I made one of the pictures a big 8x10 and put it in a frame.    


She was such a great friend. The definition of my sidekick.  I really miss her.

And now to try to do adult life with out her... will be a strange new change.  I have alot coming up in the next  3 weeks,  Thursday is the orthopedic surgeon to hopefully be able to get rid of the boot cast and resume normal activities, next Monday is the consultation with the oral surgeon to schedule the jaw procedure, which I can't wait for because I am SO over having my jaw shut and having a migraine unless I take prescription pain killers.  Then another Dr appt at the end of next week, and then, finally the rheumatologist.  I can't wait to talk to the rheumatologist to see what the heck is going on.  I have been having joint pain in my elbows, praying its just a weird quirk that goes away.


There will be lots to distract me in this coming month.  Plus if I get the green light to resume normal activities on Thursday, I will be training like crazy.  I have essentially had to cease normal life since Oct bc of the broken foot.  Most of my muscles have seriously atrophied. I will begin the "kick my own rear" process of getting back into shape.  yikes.   and, finally!!!   God has been the best comforter and made this whole process with Suzy go the best it possible could for the situation.  I am so thankful.  Change sucks, regardless, but, He is faithful, and so hooray for making it to the next step.

Heartbreak

I was so wrong. I was going to run Suzy by the vet for a quick discussion about her leg muscles that seemed to be failing. 3 hours later, I am driving home realizing what I just heard from the vet.  While getting an exam, the Dr found a mass, and saw that her gums were very pale.  She did some blood work and took a sample from the mass to send off to the oncology lab.   The blood work showed Suzy has extreme anemia, so the exertion from going up the stairs caused her to collapse for lack of oxygen/red blood cells!  Other blood work showed very high white blood cell count, and some other red flags.

I took her home, and later that night had a total meltdown.  I went up to her sobbing and started thanking her for all the things she has given me.  Things like: 1- a good morning kiss, sometimes a good morning belly flop to keep it real.  2- a welcome home reception every time I walked in the door.  3- a concerned tear wiper (aka licking my cheeks) when I cry. 4- a great alarm system, esp when I went through a hard phase of trauma and was much more afraid of night  5- a seriously great travel buddy 6- someone who listened to me explain all the boring details of contracts, civ pro, criminal etc. for 3 years.  7- Bar Exam companion in the hotel room with me for 3 days  8- excellent soccer player (I would win if I could kick it past her in the goal. She stopped it most the time!)  9- exercise motivator (great leg work out climbing stairs 3 times a day to take her out from a 2nd or 3rd story apt)  10- so much love.

I took most of today off from work to spend with her at the Gulf Coast Vet Hospital.  They did an abdominal ultrasound, and saw swollen lymphnode masses all over her, even in her lungs.  Her regular vet didn't have the oncology lab result back to tell me if it was benign or malignant until late today (though when I heard how many there were, its kinda a no brainer);  she left a voicemail saying we needed to come in tomorrow to talk.

So, tomorrow I will take my strikingly beautiful white dog with the sweetest disposition back to the vet to talk about how we can "make her more comfortable" as the dr put it.

I know it won't always be so hard, but at the moment I cannot even imagine getting another dog. It hurts way too much to lose your side-kick.

My dog Suzy

Last night, my mom drove into town for my niece's 3rd birthday. She brought my dog Suzy along to bring her back to me.   When I had the 2nd right foot surgery, the surgeon said no walking for 6 weeks. I live on the second floor, and so to let Suzy go out, I have to walk her down the stairs and back up on a leash a few times a day.   My roommate and friends helped me out the first 2 weeks, but it got to where I needed a solution for the full remaining month. My mom was in town back then for my nephew's birthday, so she took Suzy which I am so thankful for!

I was so happy to have her back last night, I played peekaboo with the car and gate and I was coming out to get her, she kept looking like, wait, is that my mom?!  

We went upstairs (I can walk now, just in the boot one more week and then should be totally back to normal foot wise!)  and as we got to the top of the stairs, she started stumbling. By the time we were 3 more feet on the bridge, she fell over sideways.  She tried to get up and kept falling. Then tried again and literally did the splits.  I freaked out, but thought it Might be because she was in a car a long time?  That or I would be taking her to the vet first thing in the morning if she is still stumbling while walking. 

She stopped stumbling, and we had a nice night. This morning I took her out, no prob going down the stairs, but going up was a struggle for her, and when we got to the top she flung herself sideways into the wall and just stayed down, panting and drooling heavily.  I think that means she is in pain.  I held her head, and spoke soothingly, but she couldn't move for a bit. She tried to get up, and I picked her back legs up and put them in position, and slowly we made it back to the apartment door.

:(  I think I have to say goodbye to my sweet dog and let her live with my mom in the country where there aren't any stairs. I want to say I am confident in my ability to carry her up and down the stairs, but my foot Just healed from being broken for 9 months, plus in a year I need it on my left foot.  And, besides that, *sigh*  what is really the best for Sue?  My mom said she was sooo happy exploring outside (my mom has a massively big backyard all fenced in for dog exploration enjoyment), and was sticking right by my mom's side when inside.   Ugh, I want her end years to be really good happy ones, she is 12.5 yrs old. I think the loving thing to do is let her go.  Plus, I would be lying if I didn't say that the added stress of worrying about her would probably put me over the edge emotionally with all my health issues going on right now.

She will have a ton of fun, and I will visit and say hello to her on the phone.  New phase of life all over the place. I got Suzy when I was 23.  She went Everywhere with me (including the hotel to take the Bar Exam!!) Now I am 30 and ready for a 30 yr old's life, and so maybe if it had to happen, a gift is the timing of it all. I love her so much, she is such a stinker ;)  so beautiful. I have been given a wonderful gift in that dog. 

Reality

I'm sorry if this makes you gag, but.... I keep having the Katy Perry song "Wide Awake" run in my head. Not because I think she is a musical genius, but the song has a way of sticking with you on repeat, and one of the lyric lines I like is 'I'm wide awake, yeah I am born again, out of the lions den...'  No clue if she is a Christian, but this song fits very well with waking up to the reality of the schemes of satan, the world, flesh.

So, know that Katy Perry is the background music in my head to this post :) 

I want to be in a place where I can see things clearly, for what they really are, and accept life on life's terms. Does anyone else have trouble balancing between hope, which is excellent, and acceptance of the present? I don't mean to be so "all or nothing", but it is something I struggle with. I feel like to really accept the here and now, I have to let go of believing it is about to change.  An example: my jaw surgery.  I know when I pray for my jaw to unlock, I ask God in full belief of His ability to do it, and that it will be done. Yet still knowing it might not be done, because it might not be His will. But still hoping it will be done. There is an anxiety that comes in me when I think about hoping it will be done, because, shocker, I then get my hopes up, and if it doesn't happen, I am dissapointed. Can I alleviate the dissapointment later by accepting the reality now, and not get my hopes up?  Does hoping God will do something mean something other than "getting my hopes up"?  I have been told many times to not come into an experience with others with expectations to things in life, but yet we are to come not only with expectations, but with full belief in them when presenting requests to God.    Right? 

I don't know the answer.  I don't know that I ever will know the answer.   Here is what I know.  #1- I 100% believe God CAN open my jaw.  #2- I 100% believe whatever the outcome, it is for my best.   #3- I 100% believe I, as a human on earth, might not get the privilege of understanding how His decision was my best.   #4- I 100% believe in His character, that He is love.

So, am I hopeful of the jaw openning? Honestly I'm not sure. I could say, yes I hope it opens but I'm not betting on it.  Is that a lack of faith?  I have a feeling that it will not open, and I am in full acceptance of the pending surgery.   Would I be elated if it were to open? YES. And thankful for that gift.        Is what I just said inconsistent with the faith of Abraham?

Strong drive

Holy moley... so my headache is much better with the pain relievers, and man has my "driven-ness" I guess you could call it, come back to play!  I realize that part of taking up the cross is taking up the Attitude Jesus had. So frustrating when my nicely atuned worldly desires feel so very entitled. Deep breath, what also has helped me is remembering that any "brilliant" idea I come up with isn't me coming up with it. As if I created my own brain.  I really have no standing to get bent out of shape.

The devotion below is from today's morning excerpt from Charles Spurgeon. Applies in many aspects of my life right now.

Exodus 14:13

Stand still, and see the salvation of the Lord.

These words contain God's command to the believer when he is reduced to great straits and brought into extraordinary difficulties. He cannot retreat; he cannot go forward; he is shut up on the right hand and on the left; what is he now to do? The Master's word to him is, "Stand still." It will be well for him if at such times he listens only to his Master's word, for other and evil advisers come with their suggestions. Despair whispers, "Lie down and die; give it all up." But God would have us put on a cheerful courage, and even in our worst times, rejoice in His love and faithfulness. Cowardice says, "Retreat; go back to the worldling's way of action; you cannot play the Christian's part, it is too difficult. Relinquish your principles." But, however much Satan may urge this course upon you, you cannot follow it if you are a child of God. His divine fiat has bid thee go from strength to strength, and so thou shalt, and neither death nor hell shall turn thee from thy course. What, if for a while thou art called to stand still, yet this is but to renew thy strength for some greater advance in due time. Precipitancy cries, "do something. Stir yourself; to stand still and wait, is sheer idleness." We must be doing something at once-we must do it so we think-instead of looking to the Lord, who will not only do something but will do everything. Presumption boasts, "If the sea be before you, march into it and expect a miracle." But Faith listens neither to Presumption, nor to Despair, nor to Cowardice, nor to Precipitancy, but it hears God say, "Stand still," and immovable as a rock it stands. "Stand still";-keep the posture of an upright man, ready for action, expecting further orders, cheerfully and patiently awaiting the directing voice; and it will not be long ere God shall say to you, as distinctly as Moses said it to the people of Israel, "Go forward."

NSAID

Today my tmj dr gave me a prescription for NSAID pain relievers for the pain from now till whenever the procedure can happen. I have always heard on commercials the "fine print" about not talking things that interact with NSAIDs. Always curious about them!   When I read the typical warning panel from the pharmacy, there were the usuals, and then instructions not to lie down for 10 minutes after taking the medicine. Ha! Weird!  

Anyway, just another thing I can say I have experienced!  Today I thought I might come home early from work and take a few sick hours, but somehow (by God!) the day went by and on top of that my work got done!  I finished outlining the new rule regarding the definition of a swap. Sounds deceivingly simple! The rule is over 550 pages. :) 

Well, I'm off to plan some of the Imago art group fall retreat.  I fell asleep right after I took the first pain reliever at 7ish,  nothing like a 2.5 hour nap before going to bed ;)

blah

Today is one of those days. I think pain and the feeling of futility go hand in hand many times because it can be so hard to get out of the immediate here and now when something hurts.  I caught myself running through scenarios of staying in bed all day, sleeping all day and night, just existing, a few times today. That is not what I really desire, of course. At all! What I desire to be free from this migraine. Sleeping all day seems to be a way to hibernate through till something else comes later, relief or a better distraction.   The challenge is to keep walking the journey even though. And then I fight that concept, because I am tired and I hurt, and then come to the same conclusion that all I can do is keep walking even though. Circle, but still a circle in motion at least.

First, who knows when it will end, so what a waste of life to give up on a gamble of "soon", too much life to miss out on. Second, it doesn't solve anything. The pain is still there whether I want it to be or not.  Third, it seems to be a big aspect of the human condition.  There is nothing new about the concept of chronic pain. I wonder if Jesus had chronic physical pain? Or a season of it. (obviously the cross).  I wonder if during the pain of the cross, and the whole beating up to it, even in the garden, if Jesus ever got depressed....  Despair beyond hope, of course not, ever. But that feeling of seriously thinking your abilities have been over-estimated. I guess the answer to that is a duh, yes. Because apart from God we can do nothing. So of course  Jesus, and each of us, have felt that.

The trick then is believing that God will renew your strength. We know He can renew our strength, and will every time we ask, that is not the variable.  The variable is if we believe it and act on that belief.  A challenge every single day man, sometimes more than once a day.

various

Ahhh yay for massages! I went to the Houston School of Massage, one hour for only $30, no tips allowed! And no talking except about the massage.  Excellent.  The person I had was really good on top of it. My jaw is still locked but it was actually really helpful with my legs, since my right leg has atrophied so much and my left leg is super tight!  

I went to the acupuncture appointment but, dude, my appt was at 12. By 12:50, there were 3 people still ahead of me. They seemed so chaotic, I didn't feel like I wanted needles put in my head by distracted people. So I left :) I'll try another time another place. 

So I will just keep waiting, trying to keep my mind renewed that this migraine isn't forever, this jaw lock isn't forever. This pain isn't forever. 

On a completely different note, I was reading Hebrews this morning and read this- Heb 10:39 "But we are not of those who shrink back and are destroyed, but of those who believe and are saved."  What a challenge, to not shrink back. I want to take Him up on it!  In light of that, I am officially saying that I am yielding to anything God wants to do regarding writing a book about His amazing rescue. You know what I'm talking about, and if not, you will have to wait and see ;)   I'll give teasers here and there. How long can you say no or wait or yes, but then not do any action? As long as you can take the Holy Spirit's insistence :) 

The kitchen sink

I woke up this morning with my head killing me, but, a slight bit of mobility increase in my jaw!  It hurt like crazy, but it was movement.  It locked right back up about 5 minutes later.... but this got me thinking that it is a blessing that the oral surgeon's first available is Aug 6th.   I have 2 weeks to do everything possible, because what if it opens the whole way!? 

So, I booked a massage appointment Sat morning, and an acupuncture (they take BCBS insurance!) appointment Sat afternoon.  I will book another massage appointment next Wed probably (bc if its not better by the 3rd, its too late to cancel the oral surgeon) and try to book 1-3 more acupuncture visits before the 3rd of Aug.   I am also going to ask for a prescription of muscle relaxers.  I get they only put a bandaid on the problem, but if it gets it to open, and then we can address the underlying issue, awesome. Anything is better than needles, scopes, and flushing in the joint attached to my skull! In the end, God is in control and I trust Him 100%, come what may! I will take Him up on the command to be wise as a serpent though. :)   Below are the potential side effects I would love to not even play the game with:

Temporary or permanent facial muscle weakness resulting from motor nerve injury during the injection.  The most common problem resulting is the inability to wrinkle the brow, raise the eyebrow or gain tight closure of the eyelids.

Numbness (temporary or permanent) of certain areas of skin in the region of the joint and sometimes in more remote areas of the face or scalp.

Bleeding within the joint which cannot be adequately controlled and could require immediate intervention by open joint surgery.

Ear problems, including inflammation of the canal, middle or inner ear infections, perforation of the ear drum and temporary or permanent hearing loss.

Instrument separation which may require open joint surgery.

Facial scarring from the entry injection.

Damage to the joint surface during the arthrocentesis or needle procedure, usually of a reversible nature but which could permanently affect joint function.

Unsuccessful entry into the joint or inability to accomplish the desired procedure because of limited motion of the joint or scarring.

Worsening of present TMJ symptoms which may require repeat arthrocentesis, arthroscopy or open joint surgery.

Changes in the bite after arthrocentesis which may affect chewing functions.  In addition, there may be temporary or permanent limited mouth opening.

locked and waiting

I haven't heard back from the oral surgeon's office yet to see if they can squeeze me in.  Ahhh I really hope so, Aug 6th is 2.5 weeks...   In the mean time, I have started letting go of trying to live my life to the same level before the onset of the migraine from this lock.  I have a hard time focusing on anything, ironically other than Dodd-Frank.  Praise God for that, as if reading the Federal Register weren't a sleeper enough in the first place, I can't imagine not having the bizare love for trade reform and still having to summarize rules.

Point is, I am starting to say no more, because I can't concentrate enough to do much! Big decisions, big conversations, etc are all just put on hold till I am migraineless. Even if that means 2.5 more weeks of this. On the upside, Dr. Moya seems to be very very reputable! There are only a handful, if that many, of oral surgeons that do arthroscopy because its expensive equipment and rare to need it.  Yay .1%'ers!

All the health issues to one cause? Background

When I was a kid, I got very sick. I was about 9. My fever would get really high, and then all I remember is immense pain in different joints to where I couldn't use them. The pain would be in one set of joints one episode, then another the next etc.  I remember going to the grocery store with my mom and brother one time, and I was fine on the way there and while in the store. But when we got back in the car, and I climbed in the back seat, I felt it coming on. My mom had to hit the breaks for something, and I fell on the floor in between my seat and the back of the front seats.  It was so fast, just like that I couldn't use my arms or legs.  When we got home, we had to get our neighbor to come pick me up out of the car and put me on the couch inside. I remember hoping he put me in a position to be able to see the tv without moving :)  he did.  

Fastforward to me turning 30.  MAN.  Things have been building up slowly, but about a month before I turned 30 it all went south.  My feet and jaw joints gave out and became very painful. Surgery to break and correct 3 joints in my right foot happened in Oct.  2 joints with just metal screws healed fine, the main one with the metal plate and screws in it did not. After about 7 months of a broken foot, I had bone graft surgery in May.  So far so good healing wise, will find out in 2 more weeks.

At the same time, this spring I was denied the muscle relaxers that seemed to be the only thing that worked at getting my jaw unlocked. My dentist said we were at the point where its just covering over the main issue and I needed to see a TMJ specialist. So I did. We started the regimen, which included an overlay of fake teeth over all my lower teeth in a non-removable (but not permanent) fixed place.  It locked.  Dr took it out and it unlocked, and then he tried again this time over correcting it and scaling it back slowly.  It was fine for a while, but then locked again. That was 5-6 weeks ago, and it hasn't unlocked. After massage, ice pack, heat, numbing shots with him manually trying to open it more than once, TENS'ing (trans-cutaneous electroneural stimulation or something), soft food diets, spiritual meditation on God/breathing, we are at a point where I will see ASAP an oral surgeon to do arthrosentesis. I'll explain more later.

So, with all this going on, I got curious about the disease I had. It had been named Palestine Fever, but it was never understood and remained a mystery disease. Since it hurt my joints back in the day, and it seems weird to be the less than 1% of the population that has such extreme cases of arthritis and joint issues at age 30, I figured there might be a connection. So I looked up the original doctors.  Below is my letter to them...




Dr.,

My name is Meagan, and I was one of the children who was thought to have
caught Palestine Fever in 1990. My mother gave permission for Scott and
White hospital to keep my blood for further research.  The main hospital
that treated me was Santa Rosa in San Antonio. I had visited my
grandparents in Palestine TX just before becoming ill.  I hope you don't
mind me contacting you; I saw your name as one of the main doctors who
worked on that disease.  I was wondering if there had been any further
understanding about the disease... particularly long term side effects
if any.
The reason I am asking is that I am now 30, and have significant joint
issues in my jaw and feet.  3 disfigured joints in each foot, and
severe TMJ in each side of my jaw.  I have had one foot surgery to
correct the joints in the right foot, and will need the same in the
left.  When I got a second opinion, the surgeon said "it is clear you
did not have surgery for vanity, anyone who looks at your xray would see
you are in pain from arthritis." That made me wonder if there are either
long term continual effects that have been discovered, or the
degradation done at the time of the disease that has been revealed as
possible, causing these issues now. The way the disease manifested in me
back then was a spike in fever, and then the inability to move a joint
or group of joints.  The pain and immobility would move from joint to
joint.  The joint issues and concerns for arthritis are what really
grabbed my attention with the issues I am having today.  I have had the
issues since I was a child, but they have increased in severity to where
I find myself now.  I also see a TMJ specialist, who is trying to help
my jaw joints realign by changing my bite through orthodontics, but the
muscles locking in place has been a challenge to this goal.
        I am not sure what further information is available. The only
information I have is what came up in a google search on Palestine
Fever.  I am not even sure if it would make any difference at all for me
today, but I am curious and feel it would bring a sense of
understanding.  It might all be one big coincidence, but on the chance
that it is not I would love any information you could provide.  If you
are not the correct person to be asking, would you mind pointing me in
the right direction?  I have included my personal email account in the
To: section; I was not sure if .gov automatically filtered yahoo mail as
spam.

Thank you for your time, very much---




Well, all 3 doctors I looked up said basically the same thing- we still don't know anything about the disease. 2 of the doctors said that my current issues could very well still be an issue with it continuing or a side effect of the degradation done at the time. I was told surgery is the only way to correct this type of joint disfigurement, because back in 1990 they didn't have the tools they have now to be able to be more proactively aggressive with degradation like it was manifesting.  

Sooooo thats the story. That is why it has seemed like I send out prayer requests every other week with a new complication :)    I'm excited to have this blog because I will have a place to update as things go on.  And I am still on the hunt, this disease might still have some secrets that can be discovered!  Somehow...

Explanation

I created this blog mainly for me to have a place to write about things in life. I am not good at writing in an actual journal, facebook isn't the right set up forum, and I think I have flooded enough email/text inboxes this year to last 10. :)  So, a blog it is!    Mainly it has been health issues this year that has been a massive hiccup in my attempt to have life calm down.  I don't know why its like a comedy of errors, but at least it is quite entertaining.