Shocking words…

There are some words that you never expect to hear in your life and some places you never expect to go. For me at least one of those happened yesterday and one will take place next week.

Some of the words I never expected to hear included “hematology/oncology”, more so anything containing “oncology.” I had lab work run over the weekend because I am still feeling sick, well apparently those labs came back with abnormal cells showing up.  My PCP recommended I see a hematologist/oncologist immediately to see what is going on. While it may very well be nothing the feelings you get when you are told to see this type of specialist…it is a mixture of shock, disbelief and automatic denial.

The options I currently have is that it is 1) a fluke , 2) a complication of a medication I am taking (although I did call my rheumatologist and she strongly said that the abnormal cells being seen are not caused by RA or any RA meds) and I sincerely doubt my asthma or heart medicine are causing it but you never know with my body, 3) a blood disorder or 4) leukemia.

The only two options I currently like are #1 or #2 but I do understand there is a possibility for #3 and #4.  I called and made an appointment for next week so for now all I can do is wait and see what happens. I am more of a realist when it comes to things like this…I realisticly understand that there are multiple options and I also understand that walking around in denial that it could be something is also a bad thing. It coud be nothing or it could be something; however, trying to talk myself into it being nothing is not doing anyone any good.

Instead I think educating myself on what could happen is a good thing, education is vital when it comes to facing a potential medical problem. People can tend to confuse education with negative or acceptance of something being wrong….that is not the case at all. I would rather walk into a doctor’s office with a clue of what could happen so that way if something is wrong I  have an idea of what my options are.

I do understand though that every person has their own method of dealing with this type of news – I have had some people say don’t even let yourself think of options #3 and #4 because by not thinking about them they won’t happen, others say just don’t even let yourself dwell on it, others who take my talking about the options as being freaking out because they are freaked out  and others who just don’t know what to say.  While I am not saying that these are bad things because each person processes in their own way..these are not ways I process.

I process by  going through the possibilities and then I learn about each possibility letting myself understand that it could be any of those possibilities. I also understand that I may not know something for several weeks as I have learned tests take time, the waiting it what bothers me.

Lastly I realize that some may wonder “what else can go wrong” or “why another thing”…you know I wish I knew the answers to those questions too! However I am striving to stay focused on  the fact that I know God has a perfect plan for my life. I do not see the whole picture, in fact I see a very small piece at a time.  I am prepared though to go through this next journey with the same attitude as I have faced this one. God knows, God’s way and only through God’s strength.

I have come to realize that you have to accept that God is in control and that he knows already what your future is. When I was getting all my tests done for my RA (before I knew it was RA) I just wanted to know why my body was sick. The same with this..my throat is killing me and I feel twice as exhausted as I did before..more so than just having RA/Fibro and the other stuff. So I know my body does not feel right, I just want someone to figure out what it is..I’m ready to know what it is so I know how to treat it.

Through God’s strength alone we can face our days ahead, I hold to that for myself and I claim that for who ever reads these random thoughts.

One place I never thought I would have to go is an oncology floor of a medical center.  I get to go there next week, hopefully the first and the last visit but nonetheless…it is a place I never though I would have to go…so yet again I get to step out of my little comfort zone. Maybe there is someone there I’m supposed to meet, maybe that is why my tests are abnormal this one time? I don’t know but it just a random thought.

Day by day right? So I’m closing for tonight, ready to pick up tomorrow…hopefully refreshed and ready for another step in my journey forward!

Monday

Well I didn’t get as much done over the weekend as I would have hoped! My body was wracked with pain to the point that bed was about the only thing I could do. I went out once on Sunday to get some groceries and some food. Saturday I went out once for something to eat, Matt wanted to try to perk me up by taking me to Chilis.

The times I’m sitting at home in so much pain I can barely move my mind wanders to the “what if’s” of life. How would life be different if I didn’t have RA/Fibro and the other medical issues? Some days in my head I think of all these things I would be doing, places I would be going and stuff like that. Then I realize that even though I have RA/Fibro and a bunch of other things..it doesn’t mean that I can not do the things I had wanted..it just means that perhaps not right now. Right now my main focus has to be getting my immune system off the ground. I had more labs run on Saturday because it seems like I’m taking a lot of steps backward and few in any steps forward!!!

Life is certainly precious and I feel that so many times we take it for granted, especially when we are healthy and young. People who are young may think that it will be years before their bodies get worn down by disease or have to face constant testing, prodding and doctor office visits (sometimes I feel like I live at my doctor’s office).  I thought that, I remember being a freshman in college thinking I had years of working, earning money and seeing the world before I would ever have to face anything like I am now.

While it is easy to take life for granted, you certainly gain new perspective when fighting an auto immune disease (or any other disease like it – cancer, MS, etc).  I have realized how precious friend and family are to me, especially those that earnestly seek to keep me encouraged. Those friends who stop saying how much better I look or how much better I must be feeling and instead ask how my day is going and is there anything I need help with. The ones I know I can be honest with hand share with them exactly how my pain is instead of me having to brush their questions of how I’m doing off because I know they really don’t want to know but they are asking because they think they should ask.

If you have someone in your life that is struggling with an “invisible illness”S (RA, Fibro, Lupus and many more) remember to give them a hug (if it doesn’t hurt them) when you see them. Some times just knowing they are not alone brings as smile. Remember that they may not always want to share with you how much they hurt, sometimes we just want to pretend we are normal and not have to talk about how bad we feel all the time. Other times we just want someone to listen to us share how much we hurt!

Two verses in the Bible that have stood out to me say  “Be still and know that I am God; I will be exalted among the nations, I will be exalted in the earth! The Lord of hosts is with us, the God of Jacob is our refuge.” (Psalm 46:10-11).  I am reminded that God is my refuge, in the darkest of times, in the toughest of pain, no matter what the Lord is there. I just need to call out to him and he will carry me through.

Monday down, 4 more work days to go! Praying that the Lord’s strength will keep me going!! Have a great night!

Pain pain and more pain

If one word could sum up the weekend so far it would sadly be the word “pain.”    😦  definitely not a good day with the RA/Fibro but what I keep telling myself is that even though my physical self is not having a good day it doesn’t mean my mental/emotional self can’t have a good day!

Amazing how God gives you the strength to smile even when you don’t know how you could. Amazing how God gives you little bursts of energy when it feels like you are totally drained! God is good..in good and rough times!

More when my body feels a bit better!

God is good all the time!

Today’s devotional really hits home for me! Sometimes getting through things is so rough but the good thing is we do not have to do it alone! Tonight was great, after work I met a friend for dinner and we had 2hrs of amazing laughter and conversations. I am so thankful for all the love and support that the Lord is blessing us with!

This is going to be short because I’m in a lot of pain and I’m ready for bed! Thursday is coming but the good thing is that Friday will be here soon!!!! 🙂

Letter to Normals

I was given this through a friend that I met on a Fibromyalgia forum, to me it speaks volumes to hopefully help friends and family understand a bit more about the disease. My first struggle is of course with RA but I also have Fibromyalgia too and that is common for many Fibro/RA patients to have a combo of both or Fibro combined with some thing else. If I can I will see if there is one for RA but certainly read through this and if you know off someone with  Fibro; hopefully this will help you understand them a bit more.

http://www.fibromyalgiatreatment.com/letter_to_normals.htm

LOVE LETTER TO NORMALS
 

by Claudia Marek

Here is my letter written to explain to family and friends what it’s like to have fibromyalgia. It won’t work miracles: it’s hard to understand our illness from the outside looking in.  But it is a start and can open the door to important dialogues. You are all welcome to use it, either as is, or as a basis for writing your own.  Remember that you have a responsibility to tell those close to you what is wrong and communicate as clearly as you can how you feel and what you need.  The best time to do that is when you are not upset!Fibromyalgia isn’t all in my head, and it isn’t contagious. It doesn’t turn into anything serious and nobody ever died from fibromyalgia (thought they might have wished they could on really awful days!!)  If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that’s fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about my symptoms I don’t want you to think I’m making this all up as I go along.

Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There’s no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That’s about the best I can hope for. Other times I may take a lot of medication and still won’t feel any better. That’s just the way it goes. I can’t control how often I feel good or when I’m going to feel terrible. Lots of people have been cutting new drugs advertisements out of magazines for me and I appreciate the thought, but I’ve seen them too.  Look at the list of side effects and the few symptoms they help in return.  Even in the best studies those expensive compounds didn’t help over half the people who tried them.  No matter how happy the people in the pictures look, there’s still no miracle drug available.

There’s no cure for fibromyalgia and it won’t go away. If I am functioning normally, I am having a good day. This doesn’t mean I’m getting better — I suffer from chronic pain and fatigue for which there is no cure. I can have good days, several good weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Weather changes can have a big effect on how I feel.  Other times there may be no warning, I may just suddenly feel awful. I can’t warn you when this is likely to happen because there isn’t any way for me to know. Sometimes this is a real spoiler and I’m sorry. The sadness I feel for what my illness does to those around me is more than I can easily describe.  You may remember me as a light-hearted fun loving person — and it hurts me that I am no longer what I was.

Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it’s jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have a hundred words for pain. Sometimes I just hurt all over like I’ve been beaten up or run over by a truck.  Sometimes I feel too tired to lift up my arm.

Besides pain, I have muscle stiffness which is worse in the morning and evenings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may have to ask you to help me up. I’m creaky and I’m klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don’t seem to connect the way I should. Hand-eye, foot-eye coordination, it’s all off. I walk slowly up and down stairs because I’m stiff and I’m afraid I might fall. When there’s no railing to hold on to, it’s terrifying.

Because I feel bad most of the time, I am always pushing myself, and sometimes I just push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it’s hard for you to understand why I can do one thing and not another. It’s important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are real.

Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things. I have no idea where I put down my purse, and I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I’m still liable to forget them. Don’t worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer’s. New kinds of brain scans have actually documented differences in our brains.

I mentioned my sensitivities earlier and I need to talk about them again. It’s more like an intolerance to everything. Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. Smells like fish or some chemicals, or fragrances or perfume can give me headaches and nausea. I also have a problem with heat and cold. It sounds like I’m never happy but that isn’t it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don’t know how else to say it. I know sometimes this means I will have to go outside, or out to the car, or go home to sit alone and that’s really all right. I don’t want or need you to give up doing what’s important to you. That would only make me feel worse.  Sometimes when I feel lousy I just want to be by myself. When I’m like this there’s nothing you can do to make me feel better, so it’s just better to let me be.

I have problems sleeping. Sometimes I get really restless and wake up and can’t get back to sleep. Other times I fall into bed and sleep for fourteen hours and still be tired. Some nights I’ll toss and turn and not be able to sleep at all. Every little thing will keep me awake.  I’m sure that’s confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.

All these symptoms and the chemical changes in my brain from pain and fatigue can make me depressed as you’d imagine. I get angry and frustrated and I have mood swings. Sometimes I know I’m being unreasonable but I can’t admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I’m in one of my moods, secretly I’m grateful. I can’t always admit it at the time, but I’m admitting it now. One thing I can tell you is it won’t help to tell me I’m irrational.  I know I am, but I can’t help it when it’s happening.

I have other symptoms like irritable bowel, muscle spasms and pelvic pain that will take their toll on our intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It’s very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you: I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.

THIS LETTER IS REPRODUCED FROM MY BOOK: FIBROMYALGIA: THE FIRST YEAR. IT’S AVAILABLE FROM BOOKSTORES AND HERE ON THE WEBSITE WHERE ALL SALES BENEFIT THE TREATMENT CENTER.
www.fibromyalgiatreatment.com

It’s bed time!!

Ohh it is sooo bed time, 2 days of work and I’m sooo exhausted! Is it Friday yet??? Hehehehe it was good day though..I felt productive at work and Matt and I had a fabulous dinner with our friend! Totally need to do that more often with him and other friends. No matter how tiring the day has been, it is awesome to be able to laugh and enjoy some great conversations and good times.

The Lord blessed last night with some amazing insight, our lives should not only attempt to balance our finances, friends, personal wants…but we should always balance our lives spiritually. When we are not balanced spiritually then in all honesty what are we gaining? If we fail to include the Lord in everything then how are we truly growing?

One thought that came to my mind was how often do we put God in a box? Drawing some from the daily devotional I just posted, when we go about and say do a budget we try to fit everything we want (or want to spend) into a number. We don’t account too much (sometimes depending) on “what ifs” that God may bring into our lives; however we may do a good job at including  “what ifs” that are major on our mind.

One more thing that really stood out to me, a friend said this to me last week during one of my late week Starbucks dates  (Love me some Starbucks). She mentioned if we did not have our trials in our lives would we really be seeking God like we are today? And you know she is right, I thought I had my perfect little life in order last year. I was on track to graduate with my MA, start a Ph.D. and on and on. But was I truly focusing on what GOD wanted…you know probably not as much as I should have.

Then I got diagnosed and life changed, a new journey was started. Then after being hospitalized and getting so sick…getting practically a new body (to bad it isn’t better but I have a better one coming!!) …yes my perspectives have changed. I realize more and more what truly has value and what is only as important as I make it. While I hope and pray you do not have to go through the pain/misery and diseases that I live with, I do hope that you realize how much better your life can be when you live it attached to the one who is greater than us all. 

I received this card in the mail and it was absolutely perfect. So  perfect I just have to put it on here because it was so perfect! The person who sent it to me, deserve a gold medal for finding it because she doesn’t realize how true the words are and how nice it was to have encouragement said this way:

“It is so easy to say “feel better” or “get well” so much easier to say, in fact, than actually do! I wish having you feel like your old self again was as easy as snapping my fingers, but we both know its not. This will take time and will probably come with a few ups and downs along the way. But however long it takes know I will be thinking of you and cheering you toward better days…wishing always for your comfort and that you will feel a little stronger each day.

Suzanne Berry” (Hallmark Card). ”

Such an awesome card! Thank you so much friend for sending it to me!! On to a better brighter day tomorrow! Despite the significant pain I was in today, I am happy I can still smile tonight!!

~Buenas Noches 🙂

What a loooonngg Day!!!

Ahhhh so exhausted!! It seems like today was such a long day…I mean I got a lot done at work but I can  tell you by Friday I will want to sleep all weekend! My body is soooo not what it used to be and the more I see it, it makes me sad to some extent but happy to enjoy learning a new body too!

Matt had a long day at work too so I went ahead and pushed a little bit and made some dinner for us. It turned out really good..probably not the perfect diabetic meal but I did my best 🙂

Tomorrow we have dinner with a friend!!!!!  We are excited because 1) being around friends is sooo encouraging and 2) Mexican food!!! 🙂 We are looking forward to a great relaxing time! Soooo I need to rest up tonight!!

Now I’m off to do a few more things that “need” done and then off to hopefully what will be an early bed! Probably not but I will try to get to bed early!