Wednesday, November 18, 2009
Monday, October 19, 2009
I've been trying to get my doctor from the pain clinic to refer me to a rhuemitologist in Peoria. A friend recommended her to me. I guess she specializes in FMS. So, my doctors office called today and said they would prefer if my family doctor did it. Are you kidding me? Its a phone call. It's helping your patient. I have got to say that I didn't expect much from him due to my past visits but this was stupid.
I called my family doctor to see if they will do this for me. Hopefully they do. I don't know why they wouldn't. The problem is this doctor didn't even diagnose me. She couldn't figure it out.
I feel like the health care system in my life is failing me. I need to make some major adjustments.
What to do what to do???
Tuesday, October 13, 2009
I have done a really bad job at keeping track of my days. Wow, I have had a rough few days. Headaches stink. I'm really just starting to feel better. Between my headaches and body pain I thought I was going to lose my mind. I have been relying on my dear sweet husband to care for me the last few days. He is so sweet. I am not sure what to do with him.
I am waiting very patiently until November 24th so I can go to the Pain Clinic again. Im still waiting for my referral to OSF Saint Francis.
Tuesday, October 6, 2009
Today I am feeling slightly energetic but to sore and weak to do anything about it. I did go to town today and meet Bob for lunch. After that I ran a couple errands and on my way home I was exhausted. I couldn't wait to get home. My limbs are weak, probably from lack of use! Actually, this is untrue. I have a good day and then I over do it. So afraid to not get it all done. I should just do a little at a time in small doses. Maybe I'll try this.
My legs have that "Ive been all them all day" feeling, but I haven't. There is always that severe stabbing, burning, aching feeling in my left BUTT. Oh how I hate that.
My Left arm is numb. I really don't know how to explain it other than that but there surely is another issue than numbness with it. It kinda feels electric. Weird huh?
I have that headache that is not quite a headache lingering in the back of my head. Just waiting there patiently. Waiting till I have something planned or even worse, my kids have something planned. Hope it chills there for a while, I really don't have time for it.
I did however drink a cup of coffee this morning. You see, Bob, my husband, is on patrol. he is on it when it comes to stopping me from having things that are gonna get me later. But today, he felt for me and let me have a cup. Maybe I wont tell him about the headache and he just might do it again!
Sierra has a conference today. Oh the thought of sitting in that little elementary sized chair. Not excited about that, at all. Oh well it will be over in 15 minutes.
Then I'm home to watch the Biggest Loser and leave for my bible study group. Hopefully I survive to the end of the day. I'm already exhausted.
Back at ya later,
- My husband and children love me unconditionally. They have seen me at my worst. They have picked up me broken pieces, washed them off and tried to glue them back together! They dont care that I lay on the couch for 3 days in a row and may smell as if I need a car wash. They love me, pain or no pain, with or without smiles, they love me.
- Good doctors are few and far between. I can not count using my hands and feet how many doctors I have visited who didnt correctly diagnose me, treat me or even show they care. Far to often I have found myself being just an insurance check and not as a person begging for help. Relief. I feel betrayed or cheated by my doctors. I really think they need to teach them how to properly feel for their patients. Im aching to find one that shows just a little bit of concern for my well being. Someone who cares that I hurt this much. Someone who isnt worried about that $ and worries more about my care.
- People judge way to fast. Whether I am parking in a handcap spot or walking "funny". People give me ugly looks. You see, I look just fine, but I am not. This has taught me valuable lessons about myself. I was just like those people before I got sick.
- Time doesnt stop for me. It just keeps ticking, tic toc, I'm still...hurting. Life goes on. Maybe if I can muster the strength, today I can get up and join the world outside.
- My children feel my pain. Maybe they don't feel it physically but they do feel pain for me. It hurts me to know that my pain causes them to hurt too. They love their mama. In a way, it makes me feel good because I know in their sadness, it is love.
- Family and friends dont always "care". Sometimes I get the feeling my "people" dont really care when they ask how I am. When I give them an answer they act like they would rather not hear me. Why ask? Does it bother you that much to know I am hurting? Do you believe me? Do you roll you eyes over the phone?
- My cat knows. I have found that on days I really really really feel bad, my cat Thomas is there. he will sleep with me for hours if not the entire day. Sometimes he even lays right where it hurts or right near it. Its like he senses my pain.
- Most people don't go out of there way to help you. Sadly, this is true. I think I am the kind of person who would walk to the end of the earth for someone, even in pain. Yet, the people I have been there for...not so much. Also the people I thought would be there for me, not so much. Where did the days go when people watched out for one another?
- I think my mind plays tricks on me.
- I am stronger than I have ever gave myself credit for.
Monday, October 5, 2009
Tuesday, September 29, 2009
It all started last week when I noticed a friends comment on facebook. She had said she was going to participate in a women's Bible study group. I think I made a comment about it sounding like fun or something. In doing this, I found myself invited to join them. Oh, how my heart and brain have needed this and yearned for it. The idea of meeting up with a group has been bouncing around in my head since February. This is when I started going to church, again. I have wanted to better my relationship with the Lord, become closer to him, know him, love him so much stronger. After being invited I said yes, of course...there's nothing standing in my way. No excuses, I have the time and the desire to get closer to God. Easy right?
So, on Sunday I pick up the book CRAZY LOVE by Francis Chan, from the woman who is hosting the group. I have met her before and also know her mother. This leaves me 3 women that I would know in the group. Whew, that's a good thing! This was a concern for me. I wouldn't say I am shy, just uncomfortable with people I don't know. This being one of the reasons I have never joined a group before.
Now I have this book that I am supposed to read the first chapter of, maybe make some notes and think about anything that stands out to me so maybe I might want to talk about it.
This whole time, something in me is trying to get me to talk myself out of the whole thing. It will be to uncomfortable to go. I will feel weird amongst all these strangers...blah blah blah.
Monday comes and it was so cold. I was so stiff that morning. Oh how the pain from my Fibromyalgia was definitely set in. To the bone, my legs, ankles, back, feet, hips etc. It wasn't going anywhere. I knew it would be with me all day. I plugged my heating blanket in and I found myself on the couch curled up, sweatpants, sweatshirt, socks, 2 blankets the works! I was still cold and I was still sore. It was almost noon and I realized I hadn't moved from my curled up state in hours. I have wasted the day, again. Don't misunderstand. I wasn't being lazy. I wanted to get off the couch. I just couldn't. Fibromyalgia is very painful. Days and symptoms vary. Sadly, you just never know when it is going to hit you or how long or hard it will be. At this time my muscles are twitching, even my eyelids. My hands and feet are swollen. They hurt so much when they are swollen so I'm battin' a thousand. I can feel the metal in my spine where I had my spinal fusion last year. It's at L4-L5, and when it's cold or when weather changes for that matter, my entire lower back aches. It's an unexplainable ache but I can tell you, nothing helps it.
I am feeling so sorry for myself. I pray. I cry. I watch t.v. to try to get my mind off it. I may take some medication, sneak in a bite or two and maybe even a little facebook. Pain still not going nowhere, it's here for the day. Did I once grab that book and read? I had the time, I surely wanted to. NO. I looked at it. I stared at it. I was afraid of it. To me it wasn't just a book, it was a change. I had to mentally prepare myself for this change. I knew then that this wasn't going to be just any group to me. If I could be STRONG enough (not break down in tears from the pain of the past 2 days), it was going to move mountains. Besides the relationship I get to build with Christ our Lord, I was seeing it another way as well. It may also be that thing I have needed to help me accept my illness. Something, or shall I say "someone" has to be the key to that.
Now its Tuesday morning and my morning starts off just the same as the day before. UGH! Didn't I just have a week like this? So I grab my blankets and assume the position. I am not going to get into what my thought's were as I lay on my couch but I will say one thing. I was being negative. I did however pick up the book and read. Almost last minute, but I read. I knew I was making myself go so I had to toughen up and just do it. I usually can only last about 3-4 hours out of the house before I feel like my body is going to actually break into a million pieces. It hurts to stand on my feet for any length of time and sitting isn't much easier. It is just much more comfortable at home where I can lay flat if I need too.
Ok, so it's time to leave and go to the group. I am nervous. I have to admit that I didn't want to get out of my car. What will these women think of me. I'm in shambles. I look as if I have been in bed all day which wasn't far from the truth. Maybe these women won't like me. Maybe they will realize that inside, I'm broken. Will they see the weak side of me? My emotions are in turmoil. I have fibromyalgia, poor pitiful me. I am a wreck on the inside and out and all it would take was one question or statement and I may be sobbing in front of a group of women I hardly know. I'm could be the basket case girl, again, yeah!
Well, it's time. I have to get out of my car now and go to the door. I wait, and wait and wait, then a friend knocks on my window. She saves me from that new kid in school jitters feeling. As we are walking to the door I am saying a small prayer to be strong and hold it together. This wasn't the time and place to feel sorry for me, it's not about me.
At the door we are slowed by a younger women walking in with her walker. I was immediately "put in my place", by myself. You see, here I was all full of myself and my suffering, questioning God for my condition and here is this women with an issue that on the outside seems to have it worse than I do. Who was I to feel so bad? Granted, I do feel so bad, but I really don't have much right to complain do I? Once in the room our group was meeting I soon realized a did know a few other women. One women I previously knew had survived breast cancer not long ago, another commented on allergies, we had arthritis and then wouldn't you know it...Firbomyalgia! Of all things! Wow, and I worried about coming??? I don't understand how I do this to myself. Oh I also want to mention, I felt uncomfortable by no one. I had let myself beat myself up for nothing. I hate that, and I always do it. I stayed strong through the discussion and realized I am really going to like it.
The discussion was wonderful. The first chapter of the book really opens your mind. Puts you in Awe of the almighty, glorious God. All I will say now is...Buy the book!
Before the group we were asked to right a prayer request out on a index card. At the meeting we would place them all in a basket and draw to get someone else's card. We are going to keep them all week and pray for who ever and whatever the card said. I thought hard about what I would ask a stranger to pray for, for me. I normally hide my illness from even my closest family members so I felt weird about asking for that. BUT I couldn't come up with any other prayer. Not for myself that is. I wrote for STRENGTH and ACCEPTANCE. I even added a purple ribbon, its the ribbon for FMS. I am having so much trouble accepting this illness. I have been trying to work on it but that's a pretty tough job.
In the basket my card went and as we drew cards I was eager to see who would get mine. As fate would have it the woman, the other woman with FMS pulled my card. It felt good to know that someone who knew my pain would be praying for it.
As I drove home I spoke to God. I explained all this and how I was humbled tonight. I thanked him for leading me to this group, beyond other things. I told him that I knew that this is the life he planned for me. I kinda learned that tonight. This IS God's plan. To look at it this way I have to accept it, my illness. So I am trying tonight to accept, I am sure I will be trying to accept for a really really long time. I accept God gave me Fibromyalgia. I may not always show it or understand it. I will never accept that I have to settle for the care or treatment I get. I will never like FMS. I will never stop praying for a cure. I will probably never be done crying from the pain. I will suffer, ache, twitch, bruise, jerk, forget & be confused (they call this Fibro fog) and so on. I will try my best to educate and inspire. I will raise awareness. I will work on not feeling ashamed because of it. I will try to lose my guilt from it. I will strive to not let it become me.
Wednesday, September 23, 2009
Bob seems to be so happy with his new job which is a huge stress reliever! Kids are doing great and all is well!
Praying for a good day tomorrow. Maybe I can have a good streak.
Tuesday, September 22, 2009
Symptoms of FMS and or other medical problems related:
- Flu-like pain that can be severe. Usually for me it is very painful. Often leaving me in bed for sometimes days at a time.
- A constant feeling of exhaustion. I am always lagging behind. I sometimes work for the school system, on days God has blessed me with feeling better. When the children walk through the halls to their destinations, we walk with them and I am usually far behind, not even keeping up with the pack.
- Specific tender points that hurt. There are plenty...my back, shoulders, arms, ankles, knees and hips. There are days, for me, everywhere hurts. Sometimes I think my hair even hurts.
- Overall body aches. I can say no more. There is no relief.
- Depression. An everyday struggle. It is hard to keep my head above the water. God is beside me but sometimes I need help realizing this.
- Muscle stiffness and pain. Yep. The morning is the worst. I pop everywhere and it takes along time to feel unstiff to get out of bed.
- Insomnia or other sleep disorders. ALWAYS...I hate it. At night my husband goes to sleep and I stay up because I can't sleep. It hurts to not be able to come to bed with him. If I do, my mind travels to ugly waters.
- Extreme fatigue. I feel heavy. Weak. Tired. I last about 3-4 hours away from home. I can do "chores" in small shifts. Usually my "chores" get passed onto someone else. This also leads my head to the depression stage.
- Mental malaise and confusion, often referred to as fibro fog. OH how I hate this. Often I feel stupid. I will talk about something and forget right in the middle of my sentence. Go to a room and forget what I was doing. I could go on and on, on this subjuct but lets just leave it as I feel messed up in the head.
- Irritable bowel syndrome. UGH!
- Interstitial cystitis. ? I have no idea what this is???
- Arthritis. YES
- Headaches. They are horrible. Some leave you wishen' for....
- Chronic Fatigue Syndrome. So tired
These are just some things listed in this GREAT book. Through talking to new friends who share this nasty illness with me we have also realized other funny common issues...like wierd unexplanable bruises. We carry shame and guilt. Muscle spasms, I can count hundreds a day.
There are probrably plenty other issues but this is what I will cover for now.
Do you have other symptoms? Do you know someone suffering with this illness? Reach out to someone you know suffering from something. Ask them how they are right out of the blue and take the time to listen. Sometimes a listening ear means more than any medication.
Nothing else is seeming to make sense. Through Facebook I am meeting some wonderful friends who are going to help me get through this. They too have Fibromyalgia. When they write me, their words...they are my words. Things that I have said and felt. It really helps to know somewhere...there are people who I can relate to.
Its is hard to express how you feel to people. My family has to see me suffer or hear me complain. They don't show that it bothers them but sometimes I feel like a burden. I would hate to have to listen to someone always in pain. Always hurting, sad, lost. Sometimes I feel like my husband can see my soul aching and begging to be released. I don't want my family to hurt for me.
I am writing this blog to be positive. Maybe inspiring. Maybe find more friends to help along the way or to be helped.
I am going to sleep tonight with prayers for all of us.
Thank goodness for technology.
Monday, September 21, 2009
How can I go on living like this? It is hard when you know that there is NO relief coming. There is no magic cure, or pill. There is no surgery or quick fix. For that matter, there is no slow fix. I will for the rest of my life be stuck with Fibromyalgia.
Please know I am a God fearing women and I would never do anything stupid like take my own life. I love my husband and my children and want to always be here for them. However, I can not wait for God to take me. For I know there are no tears in heaven and I know there is no pain. This day I will wait for, but probrably not very patiently.
I am so tired of making my kids wait till mom feels better. Sierra wants to go on a bike ride with her mommy. I promised I would go as soon as I felt better. That was 2 years ago. Victoria must surely feel like she gets stuck doing alot of extra house work because she is the oldest and has to carry more of my load. Then there is Nick. Nick never complains about what I can or cant do for him. He tries to find ways to help me, they all do. But for some reason, when Nick, my little man, comes up with ideas on what will "work" for mommy, it tugs a little harder at my heart strings.
I want to bad to be the mom who gets to play hard, play long. Have tickle fights! I want to be the mom that can go anywhere and do anything.
I guess somehow, I need to start to accept this illness. My family needs me to, I need me to.
Monday, September 14, 2009
- The illness I live with is: Fibromyalgia and Migraine Headaches. My Fibromyalgia symptoms are sometimes severe, but there are days I feel really good. Imagine having the flu, with all your body aching. Now, times it by 10 and this is how I feel almost all of the time. My pain is in my legs, hips, arms, shoulders, knees, ankles and butt! It is not always in the same place all the time. It moves around. Thankfully there are some things I can do to help relieve some of the symptoms sometimes.
- I was diagnosed with it in: April 2009.
- However, I have experienced pain for: about 8 years. On January 9th of 2008 I had an anterior spinal fusion, L-5 area. I had the surgery for a herniated disc and after this, I started experiencing more pain, leading the doctors to the diagnosis.
- The biggest adjustment I have had to make is: Being told no, you cant do that. It is really hard not to do the things I have always done and long to do again. I cant even do the simplest things like riding a lawn mower anymore. In my head I can do all things. If I try to do these things I know I truly cant do, which is almost everything, I suffer later.
- Most people assume: There is nothing wrong with me. I don't look sick and I don't look sore. I look like a normal healthy person. I feel guilty sometimes as I park in a handicap spot because I feel like people think I don't need to be there. Walking through the store, however, for almost any length of time hurts me and will cause me a few hours in bed.
- The hardest part of the mornings are: Waking up. Usually I am so tired because I never get a good nights sleep. Also this is the time I seem to be the stiffest. When I stretch to get out of bed I sound like the snap crackle pop cereal. Also, when I get a headache, I usually wake up with one. It is there before I even open my eyes. These mornings I dread. I also feel like I am not a good mom in the mornings because I cant do much to help my children get ready for school.
- My favorite medical t.v. show is: Greys Anatomy, but for the sake of these questions I will say House, because it gives me hope for a doctor who really cares and works to help his patients and hopefully a cure!
- A gadget I cant live without: My cell phone or computer, it is basically my only source to the outside world. I have stopped going out with friends or shopping with the girls because of my illness and the pain it causes.
- The hardest part of my nights are: First it is getting comfortable. If I haven't spent my day laying down, as soon as I do lay down the muscle spasms kick in. I swear, if I were to count them I would have at least a hundred a night, in my legs alone. I often have an issue falling asleep and or staying that way. There is no comfortable position. This is also when my mind has no one or nothing to keep it busy so my thoughts kick in. Usually they are depressing thoughts, why me...blah blah blah.
- Each day I take: 2 pills that are prescribed by my doctor. But I feel I get very little if any relief from the medication. I have tried so many different medications, I could probably open a pharmacy.
- Regarding Alternative Treatment: If it works for you great! I have tried several different things, some worked and some didn't. I spent 2 weeks at the Iowa City Hospital Spine Rehab Clinic in Jan 09. I felt like the time I spent there, I got no relief. I felt as if maybe I was even sorer, because I was more active then normal. I had had the massage therapy which I did notice a difference in the way I felt but I couldn't afford to keep up the treatment. I have tried acupuncture, chiropractic treatments and more but again, it is to expensive to keep up the treatments. I am hoping to get insurance and start the recommended water therapy.
- If I had to chose between an invisible illness or a visible one I would pick: This isn't a fair question. I won't mess with the way God planned things so I will leave things the way they are.
- Regarding working and career: I owned an all women's fitness facility until Jan 09. I loved this company and what it stood for but I couldn't be there anymore. Personally, for me, it is to hard to hold down a job. I never know when I will feel good or bad. I cant be a person known as undependable so I choose to stay home and help out where I can. I did just sign up to be an substitute associate for the Burlington School District and this gives me the chance to get out of the house, yet stay home when I need to.
- People would be surprised to know: I hurt so bad sometimes I wish God would come and take me away. BUT, the next day I could feel good enough to do anything!
- The hardest things to accept about my new reality has been: that I have limitations and just accepting something IS wrong with me. Its hard to ask for help or to explain to people that I have an illness. Its really hard to know I cant do certain things with or for my children and husband.
- Something I never thought I could do with my illness was: Spend an entire day at an amusement park with my family and I didn't even collapse!
- The commercials about my illness: Look so promising but they give false impressions.
- Something I really miss doing since my symptoms is: riding my bike, I really would like to do that, and workout. Hold my kids tight, being with my husband often, spoonriver, girls nights out, shopping, oh how i could go on and on and on.
- It was really hard to have to give up: my pride, my freedom and my pain free body. It has been really hard to sit home and not contribute to our financial situations.
- A new hobby I have taken up is: Sewing. Some days I feel good enough to sew something, otherwise, I like the blogging and staying in touch with my family and friends on facebook.
- If I could have one day of feeling normal again: I would first fall to my knees and thank God. Then after I wiped my tears I would RUN to my family and hug them, play with them, be with them and do whatever they wanted to do. I would also save some special time for me and my husband.
- My illness has taught me: Not to judge people. To have patience and trust in God.
- Want to know a secret? One thing that gets under my skin is: When people try to fill me full of their remedies and cures. Unless they have been here, in my shoes, how do they know what will make me feel better. I have tried so many things, I am pretty sure I have thought about this or that at some point in time...I also don't like when I feel like my symptoms have been ignored by doctors and I hate it when I am left to feel the pain forever with no relief and doctors act like it is no big deal.
- But I love it when people: Care, truly care.
- My favorite motto, scripture, or saying that gets me through things is: The Serenity Prayer for sure and for Fibromyalgia..."I don't look sick" I want that t-shirt.
- When someone is diagnosed I'd like to tell them: Read the Fibromyalgia for dummies book. I learned more in it than I have from any doctor I paid to help me. To be strong and don't let it get to your soul.
- Something that has surprised me about living with an illness is: I'm stronger than I thought I was.
- The nicest thing someone has done for me when I wasn't feeling well was: Well, my husband and kids are pretty good at taking care of me. Bob, my husband, will stop at nothing to make sure I am comfortable. I also have a couple really good friends who will try to help whenever they can.
- I'm involved in Illness Awareness Week because: I need my family and friends to understand me and my illness. I need everyone to understand! The more others look into my illness the closer I get to a cure, or relief or maybe there will be just one more person I know that will show some compassion. Also, maybe people will be less apt to judge people. You never know what is on the inside of a person.
- The fact that you read this makes me feel: SO good. You sure do must care about me and I need all of that I can get.
Thursday, September 10, 2009
Our family is struggling. I haven't worked since January, except for the volunteering I have been doing at the school. My husband is quiting his job because his paychecks wont cash anymore, yet his boss doesn't understand why he is leaving. Not to mention his company lost our health insurance. This leaves us in a bind, me with my FMS, our oldest daughter has CAH, Conginital Adrenal Hyperplasia, and a little girl with allergies. We need insurance and it has been to long since we have had it. The van needs a transmission so I couldn't go to work if I wanted to. The car's alternator is almost dead. We have 2 mowers that need belts, or blades or something so our grass is as tall as the trees. The bills are coming in but there isn't no money coming in. Please God, let him cash his check. There isn't very much food in our fridge, or on the shelves. The basics are running low and I don't know what we are going to do. BUT I know how we will get through and this is with God.
I feel like I should be Bob's back up. Like I should be able to help. I feel guilty for not going to work and fighting through this FMS. It hurts my heart to know I haven't been helping out financially and that this is where we have ended up. It seems like every time we turn around something is trying to knock us down. How do you survive? How do we pick up these pieces that seem to many and to scattered? How will we put this back together? Will our kids understand the struggle? Dear Lord, please help me see? Help me understand. I trust in you.
Wednesday, August 26, 2009
Facebook | Fibromyalgia Fatigue Center "And must I then, indeed, PAIN, live with you All through my life? - sharing my fire, my bed, Sharing - oh, worst of all things! - the same head? - And, when I feed myself, feeding you, too?" Edna St. Vincent Millay
So true. Everyday, all day, every minute, whether we say it or hide it...pain is there. It never ever goes away. Somedays we may feel better than others. Somedays we may shine. But it is there. always there. In the back of our minds, deep in our muscles, our bones, embedded near our souls. Its there on good days and bad. Birthdays, holidays, happy days, all days. FMS is an unwelcomed visitor that for me, never ever leaves!
Days ago I told my husband as I was laying in bed, tears streaming down my face. I couldn't take it anymore. I had broken down...again. The pain had taken control of my body once again. I said...I dont even remember not hurting. I am only 32 years old and I feel this way. Not fair. I want to feel good. I want to feel normal. I cant take this no more. How will I make it through 32 more years of life? How do I go on?
Fibromyalgia is a chronic medical problem. It affects more than 6 million people in the United States alone. Fibromyalgia or FMS has several symptoms. Pain in the muscles and tendons that moves locations throughout the body, headaches, fatigue and more. People with FMS suffer hightened pain sensitivity and feel pain longer than people without FMS.
Often people with FMS feel like their pain gets dismissed. You can not look at a person with FMS and see their pain. This makes it hard to feel their pain. FMS pain is VERY REAL and very hard to accept and deal with.
Straight from the book listed above..."Many people say to truly understand how FMS feels, think about what you feel like when you have the flu. Recall the aching and pain in parts of your body or in your entire body. Then multiply those achy feelings by about 10 times. Now, imagine feeling that way everyday. THAT is what Fibromyalgia feels like for a lot of people. Pretty nasty."
If you or a loved one suffers from FMS I highly recommend this book for both of you. Sometimes it is hard to understand from the outside and give the right help. Not knowing what to say to people with FMS is hard and sometimes can hurt their feelings. Having FMS...not knowing how to explain it to people or how to deal with it is even harder. This book really helps, as do other books Im sure.