Thursday, January 28, 2010

Putting Things Into Perspective

Not so very long ago, it seems I was being given my 1st diagnosis of fibromyalgia and chronic fatigue syndrome. Of depression, high blood pressure, cluster and migraine headaches............of polycystic ovarian syndrome and the list just goes on and on. From the very first mention of these illnesses I had felt like it was the end of the world at least the end of MY world. I've continuously pondered what my life was going to be like with the illnesses short term and long term. I've went through all the stages with each new diagnosis, trying my best to just get to the acceptance part of my life as I grieve it's loss.



On Tuesday of last week, something happened that has helped me put my life, with all it's illnesses, into perspective like nothing else ever has or ever will do again. My Mother was diagnosed with Idiopathic Pulmonary Fibrosis, which is a terminal disease, and advised she has roughly 6 months to 1 year to live, barring the miraculous hand of God. All of a sudden I don't notice the pain in my back and legs and neck and arms now because I can't feel them over the pain in my heart. I'm sure at some point the numbness will wear off and I will once again be caught up in my self administrations, but for now I can only feel the sharp pain in the vicinity where my heart once took up residence.



A lot of people would say that my Mom has led a full life and has no regrets, which I believe to be true. However it is not for her loss that I grieve, but my own. I have a 6 year old daughter that I wonder how I'm going to raise without the wisdom of my Mother. Who do I go to for advice now? And Christmas just won't be the same without Mama's Fudge Pound Cake! How will we fill the void that she is going to leave?

All that I truly know now is that she is suffering more than I've ever suffered with my own illnesses. All her independence is gone and she is totally dependent on others now for her most basic of needs. I do not wish her to have to spend 6 months like this. I pray that God will be merciful and take her quickly so that she does not have to suffer so.

I've finally found something that causes more pain than that of Fibromyalgia............the loss of my Mother's freedom, personality and life. And this is so very painful that only God's peace can give relief. No amount of pain medicine will help this ailment. Only trusting in my Lord and Saviour, which is also my Mother's, will give me Peace in knowing that she will be in a much better place where there is no pain or sorrow ever again.

So in hindsight now I know that I CAN get through this illness called fibromyalgia, Because if I can get through the loss of my Mother, I can get through anything. She's my best friend, my confidant, my advisor. For many years she was my teacher, my doctor and nurse, my seamstress, dietitian, taxi driver, etc.... You name it and she filled the need for me. I'm going to miss her so much. I already do miss her. Her vibrant spirit and strong will. But I know there is a life BEYOND this life where she will be free and unencumbered by this earthly shell of a body.

Here in this life, she has been my prayer warrior to God regarding my illnesses. She has asked for strength and grace to bear my burdens and even for healing. And God has answered many of these prayers with a yes. I know once she leaves this world she will still be praying for me, but from now on she will be able to ask God in person to help me through each day. Fibromyalgia has no hold on me. Nor any of my other illnesses for one day I shall be with my mother again and neither of us will be sick any more. We will have blessed perfect bodies and there'll be no more pain or suffering.

I thank God for helping me Put Things Into Perspective!

Friday, December 11, 2009

Pain meds - necessary and toxic?

I received some disturbing news from my doctor's office today: my liver count is high. And since I don't drink alcoholic beverages at all, this little problem is undoubtedly being caused by taking pain meds that are formulated with acetaminophen.

I knew taking acetaminophen products could be harmful to the liver but I didn't think I took enough of them to have to worry about it. But, over the last few months, pain meds have become a lot more necessary.  Excedrin Migraine helps best for migraine headaches, Tramadol works pretty well for my afternoon body aches and the occasional Hydrocodone helps take the edge off my severe pain. All of these meds contain acetaminophen and I guess I've been taking enough of them to affect my liver, even though I never take two different kinds of pain meds on the same day and I rarely take more than one dose a day.

My doctor said I need to come back in a month to have my liver count checked again and, if it's still high, they will have to run more tests. She also said I don't have to completely stop taking my pain meds but I should take them only when necessary. Um, hello! I DO only take them when necessary. I'm very conservative about taking medications. But the past few months have been really rough and I have been taking a lot more than normal just to get by.

This news couldn't come at a worse time. December is the month that is the hardest for me to get through.  I always have a flare when the seasons change and December is when we usually get our first wintry weather (and this year is definitely no exception - we've had daytime highs in the 20's all week). Add to this all the stress and busyness of the holidays and I can barely get through, even with pain meds.

When I see the doctor next month, I will insist she looks in to some of the new pain meds they are coming out with for chronic pain patients. And in the meantime....????? I honestly don't know how to get through the shopping, cooking and socializing of the holidays without quite a bit of pain medication.

Thursday, December 10, 2009

Fibro and Massage

Massage is supposed to be a positive experience, right? I used to think so anyway. Sometimes, when I have a lot of muscle tension or painful trigger points, it's not the most pleasant experience but I always used to feel better afterward. Now? Not so much. At least not in the hours right after the massage.

For the last nine months or so, I feel very depressed after getting a massage, to the point where I just want to sit and cry. I have no idea what I want to cry about, I just feel really sad.  And, I find myself reaching for comfort food, which isn't something I don't do all that often.

I had a massage about 1:00 today and I've been feeling sad ever since, even though I felt pretty happy before. I wonder what causes this?

One theory about fibromyalgia is that people store unresolved emotions in the tissues of their body. My massage experience makes me wonder if this could be part of the picture. Massage detoxifies the body and releases toxins, it makes sense (to me) that it could also release emotional toxins.

I'm not sure what to do about this except drink extra fluids and take sea salt baths to help flush out the toxins. Massage does help me. If I go longer than a month without a massage I have more trouble with my arms and shoulders aching and my hands falling asleep at night. And just letting everything build up wouldn't be good either. When it comes to toxins, emotional or otherwise, I think of what Shrek says about gas, "better out than in, I say!"

Yes, I figure it's best to get all the pesky, troublesome toxins and emotions out, even it's temporarily uncomfortable. But that's probably because I do get a massage every month. If I hadn't had a massage for a long period of time, I would feel very apprehensive about how it might affect me. My very first massage caused the worst flare of my entire life. It was that flare that made me sick enough to get diagnosed with fibromyalgia. It was seven years ago but I still remember how miserable I was and how hard it was just to stay awake to watch my kids. At the time, if I would have made the connection to massage, I wouldn't have had the courage to get another one. Lucky for me, my second massage a couple of years later didn't bother me as much and they've just kept getting easier since them. Well, except for this weird emotional garbage I'm dealing with now.

What are your thoughts? Are you able to get massages? What happens when you do?

*While writing this, I realized I'm also getting a migraine. I don't know if it's related to the massage but I'm pretty sure it's affecting my ability to type and use language. Please forgive any errors or lack of coherence!

Wednesday, December 9, 2009

WHAT DOES CHRISTMAS MEAN TO ME?


What does Christmas mean to me, Is it lights upon the tree

Sharing presents with friends and family,

Is it snow falling down, On a Winter's morn

Reading postcards from those far from home.............


Cho. -

No it's Heaven coming down, Glory all around

The angels singing, "Glory to the King"

A baby being born, GOD in human form

The blessed Messiah, come to redeem this world


What does Christmas mean to me, Is it having company

Carolers singing in perfect harmony,

Is it shopping in the malls, Buying gifts for one and all

Waiting in wonder to see Santa Clause..................


Cho. -

No it's Heaven coming down, Glory all around

The angels singing, "Glory to the King"

A baby being born, GOD in human form

The blessed Messiah, come to redeem this world


Repeat Chorus

Tag-

Yes the Blessed Messiah come to redeem MY world.

Monday, December 7, 2009

Merry Christmas!

I just wanted to say a Very Merry Christmas to all our Fibro Friends out there. I'm sorry it's been a while since I've blogged. I've had a lot on my plate.
The holidays are hard enough on us with fibro without other problems getting in the way, but I've really had a handful of things going on.
First, my daughter has been sick...........forever! She gets over one illness and then has something else. She is only 5, will be 6 in January. She had pnumonia 3 months ago and has stayed sick almost ever since. She caught the flu and was sick for 2 weeks with it. Before that she had a sinus infection And now she has some other upper respiratory virus. Poor baby! And as much as I enjoy taking care of her, this is getting very tedious. I'm worn out~
ON top of that, both of my parent have bad cases of pneumonia. My Dad was in the hospital for almost 2 weeks and now has been transferred to a nursing home because my Mom can't take care of him and there's no one else who can. It's not that I and my siblings don't want to, we just aren't able to take care of him 24 hrs a day. At this point, he's so weak he can barely walk. They will be doing rehab at the nursing home to strengthen him and hopefully he will be able to come back home in a few weeks. It all depends on how much he works while he is there.
And then my mother is sick with pneumonia as well. She's on her 3rd round of antibiotics. Hopefully this last round is helping. She seems to be getting a little bit better now. Praise the Lord.
On top of all of this, I've been in a major flare with my fibromyalgia and arthritis. I just feel like sitting around and crying, but I can't because it will cause a migraine (which I also have had yesterday and today!).
So what do I have to be saying, Merry Christmas, about? Well, because God is still good and He is still faithful. Throughout this entire ordeal, He has been with me every step of the way. Giving me courage and strength to go on. I love Him so much, but my love for Him can't even begin to compare to His love for me. HE is the reason I celebrate Christmas.
So I wish you all a very Merry Christmas and Happy Holidays and say a prayer for all our fibro friends that God will make your Christmas merry and bright as well.
Love to all,
Teresa

Monday, November 9, 2009

Christmas decorations in November!

For those of you who know me, this will not come as much of a shock, but I started putting my Christmas decorations up the day after Halloween. Most people think, well, they think I'm nuts! (I don't know if I could prove them wrong.) However, I have very good reasons for starting so early, of which I'm going to share with you.

Christmas is my favorite time of year. I love everything about it........even the shopping! I look forward to it all year long. I start listening to Christmas music in July. Why am I so crazy about the holiday? Well, it's just always been very special to me. A time when you forgot all the bad things that were going on in your life and focused on someone other than yourself. I love Christmas not for what I can get, but for what I can give. No matter how poor you are, you can give something, especially LOVE~

But my reasons for starting so early in the year are not strictly based on a fondness for the holiday and what it holds. As I have aged, my health has steadily went downhill. I suffer with fibromyalgia, arthritis and a host of other related illnesses, but I vowed a long time ago to not let this turn me into a scrooge during this beloved time of year. It also helps that I have a 5 year old daughter who loves the holidays as much as I do at the ripe old age of 41. She makes me old and keeps me young all at the same time. Basically, because of my illnesses, I am unable to perform tasks in a timely manner. It takes me forever to do something because I have to keep stopping to rest. And sometimes this might mean resting for days on end. Sometimes the simpliest of tasks can literally put me in bed. That is the #1 reason that I start so early on my decorations (as well as shopping). Plus, I like to decorate a LOT! Not just a tree in the window and a wreath on the door for me! No, I want the whole house to celebrate Christmas so I decorate a bit in every room. My basic task list includes:
Christmas tree in the big window; Miniature lighted Christmas village (in the same room); Decorated mantle and fireplace; Lights and ribbon on the stair bannisters; The ARCH of Christmas cards; Christmas china & crystal in the dining room; Snowman collection; small Christmas tree in my daughter's room; Christmas bedding; Christmas towels and toiletries in the bathrooms; OUTSIDE lights, including stair bannisters, hedges, walkway, my lighted polar bear and deer on the lawn.

And OF COURSE before any of these things can even BEGIN, cleaning has to be done. Now, I am not a cleaner by nature. I don't usually mind if everything isn't in it's place.......except at Christmastime. I want everything perfect then. Unfortunately, my body does not cooperate with my schedule of decoration and cleaning. I have great difficulty bending and kneeling, climbing and stooping, twisting and reaching, etc.......... All of which are required in both decorating and cleaning. So it takes me a while to actually get all of this work accomplished. I have to stop and rest often and as I said earlier, this may be for several days at a time. If I overdo it, which is SO easy to do without even knowing it, I end up in bed for several days. And I'll be darned if I am going to put all this work into the house just to look at it for 2 weeks!!!! It takes me longer than that to put it all up! In all seriousness, it takes me about 3 weeks to complete all my decorating for the holidays. So I start the day, or weekend, after Halloween and continue working until it's complete, which is just about time for Thanksgiving. By then, everyone else has started putting their holiday decor up and I don't feel so alone!!

In short, I start so early because it takes me so long to get it all done. And I do it all just because it makes me happy. It makes me feel good. It makes other people feel good, even if they do think I'm crazy!! I deal with moderate to severe pain on regular , daily basis and not much helps it. But at this time of the year I get natural "feel good" endorphines just from looking around my house, Seeing a grin on my daughter's face and watching her wonder what's under the Christmas tree. Do I really need a better reason than that?

As a side note I would like to update you on my health status. As many of you know I have been having episodes of falling asleep during the day, during activity even, and having a very difficult time coming out of it. This has been going on about 1 1/2 months now. It makes driving almost impossible. My new neurologist started me on the drug Neurontin for my migraines. For some reason this has made the sleeping issue better. I spoke with the dr on Friday of last week and he has ordered a sleep study, still to be scheduled, for me. He feels that the sleeping episodes could be 1 of 3 diagnosis: Sleep Apnea, Narcolepsy, or Epilepsy. He also felt that I may have possibly been having mild seizures during these episodes, especially since they seem to have gotten better once I started taking the neurontin. I have 2 siblings with epilepsy.
Please pray for me that the doctors will get an accurate diagnosis and plan of treatment. I really do not need to lose my drivers license! I am praying that I will not have any of these diagnosis, that GOD will heal me, but if not I pray that I will have the simpliest to manage illness. I know that this sounds rather selfish of me, but I'm mainly thinking of the responsibilities that I have on me and how this would be hindered if I get a bad diagnosis or if suitable treatment is not found.

Thank you for all your thoughts and prayers and may you have a blessed Thanksgiving and Christmas season!

Tuesday, October 27, 2009

Should I Try It??????

It seems every day somebody else is running into me or emailing me with the latest miracle cure for fibromyalgia. Just drink this 3 times a day..........just do that 5 times a week. The latest is a miracle doctor who provides specialized care for over 20 different illnesses! NO drugs, no adjustments, no therapy.........the only problem I found with their website is that they couldn't tell me exactly what it is they DO do? I have a friend who referred me there, who has fibro also, who swears by the treatment, but she also couldn't tell me what the treatment was!

Then I have another friend who has just started the latest miracle cure all drink and she wants me to try it. It's, of course, all natural, no drugs involved. Helps the body heal itself! But once again, they can't tell me exactly what it is that the stuff does.

These alternative treatments are NOT cheap, nor are they covered under insurance or medicare.
Don't get me wrong....I KNOW my friends are only trying to help me. They see me suffering with this horrible thing called fibromyalgia and they want to help. They've tried something that they think has made them feel better, so surely it would work for me as well. I mean, what have I got to lose? I'm miserable now, if it fails I will still just be miserable. At least it's worth a shot, right?

What they don't realize is that I've already tried almost everything out there under the sun at least once. Rarely are there actually new treatments. They're just the same old ones remodeled to look like the latest and greatest cure all. I've tried all the scientific treatments that I know of. I've tried all the alternative treatments that I know of. I've tried everything you could possibly think of that's out there, whether covered by insurance or not and the conclusion I've come to is that nothing is going to cure me because they don't even know why I'm sick! The things that have helped me, I've stuck with. Unfortunately, it is true that these are just "band aids", if you will, and aren't actually helping me get better, but rather just treat the symptoms. As far as I can tell, that's the best that technology has to offer me at this juncture of life.

So when someone, especially great friends, come up to me and want me to try the latest and greatest treatments, please don't get mad at me if I don't immediately run out and buy it or book an appointment. Don't be upset that I'm skeptical. Don't write me off as "not wanting to get better" just because I don't try it. Because frankly I'm tired, just tired of being poked and prodded and used as a guinea pig for every new therapy that comes along. I'm heartbroken and discouraged that there's NOTHING to actually treat my illness and the illnesses that come along with it. Don't write me off.........I'm not trying to be difficult, I'm just being realistic.

So that leaves me with the age old question.........Should I try it? What do YOU think?? Seriously, What DO you think? I want to know.

Teresa