Monthly Archives: January 2009
Sometimes the hurt is so bad
Sometimes all I want to do is cry
Sometimes I just want to be die
In times of that crisis I reach for you
There you are
Your arms stretched wide
Your love and pride
Trust in us during this stride
You amaze me more everyday
As you wipe the tear off my cheek
You tell me things are going to all right
I welcome your embrace
As I fall from grace
In my moment of crisis
As my mind goes to war
As my heart breaks inside
You offer your arms for me to hide
I crave your presence in my time of need
A man like you is the dying breed
Promise me, in this moment and beyond
Your love will never die
Your eyes will cherish me always
And your arms always open to me
Tell me I’m yours forever
I’ll never be alone
As you allow me to break down
For what the past has done
The night is dark
You are my light
Sometimes all I need is you
Sometimes you stop the cry
Sometimes you help me survive
The war inside my mind
The chaos inside my world
The ache inside my heart
All the puzzle parts
Of a past relived over and over
You surround me with cover
You’re my best friend and my lover
Living with fibromyalgia isn’t easy. I have a neuroma in my back, which makes it even harder. I believe the tumor is what brought on the fibromyalgia. Experts believe that an illness or injury brings on fibromyalgia in the patients who come down with the illness. Some experts believe that people are genetically inclined to come down with the illness.
It could be either way with me. My family history is full of illness so it could have predisposed me to the illness fibromyalgia. I believe my genetics have more to do with both.
One of the hardest things for me to adjust to is limiting myself. For those of you who don’t know how fibromyalgia works let me explain a few things.
Fibromyalgia affects me everyday but every day is a different level of pain throughout my body. It doesn’t just affect one part of my body either. It affects my entire body. Fibromyalgia also works in flares. Each flare is different for each person and each flare will also vary in pain level.
When I have a flare, it usually is real bad. My flares make me feel as if I have come down with a bad case of the flu. I will have pain around my joints, and my muscles will burn like they are on fire. My legs will feel like they are weighed down with lead. I also get headaches with these flares sometimes and they are migraines. Unfortunately though I have a constant headache everyday but they have become something I have learned to just live with.
So now back to the hardest thing that I had to learn to adjust to. On a good day I have higher energy and my body feels almost normal. When I say almost normal I am referring to how I felt before all these health problems came about. It is hard for me to not over do myself. That is the most important thing to learn if you suffer from fibromyalgia. Even though you feel great and are able to do the things you want to do on the good day, if you over do yourself, the next day could be a very bad flare day. It is important to conserve some of that good energy instead of using it up in one swoop.
Another thing I’ve had to learn to do is have a routine bed time. Except on rare occasions I have set myself up to where I go to bed no later than midnight. Not to say I don’t go to bed earlier because many nights I do. I have just made the cut off midnight just so I have a limit set that I can live with the next day. If I stay up later then midnight, the next day is a very bad flare day for me every time. Sometimes it will take me two days to make up for one night of not going to bed before midnight. I have come to realize midnight is the latest my body can tolerate well enough to function the next day.
Most people with fibromyalgia seem to be helped with heating pads, hot tubs, and hot showers. I do take pretty hot showers, but usually right afterwards I got to get into bed because my legs will feel like Jell-O. That is not a normal symptom of fibromyalgia so I have to be checked for MS next month by my new neurologist.
I do find great comfort in my neck wrap. I heat that sucker up and it is like heaven touching my shoulders and neck area on tough days.
I have weakness in my arms and legs, which again are not normal symptoms for fibromyalgia so that is why the new neurologist wants to check some other things out in myself.
Fatigue is very bad for someone with fibromyalgia. My fatigue is tough to live with too. When you get tired going from one room in the house to another you know something isn’t right. Fatigue has a lot to do with the sleep disturbances fibromyalgia patients have. Most patients with fibromyalgia fail to get the restorative sleep stage through the night. Experts have found that when REM sleep begins for a person with fibromyalgia the brain has activity that begins which gives the person a feeling of being awake in the middle of night. It isn’t abnormal to wake up many times of the night if a person has fibromyalgia. I have a HUGE problem with my sleep. Right now I take stuff to help me sleep, but I am going in for a sleep study to be sure I do not have sleep apnea.
Getting diagnosed with fibromyalgia is a great hurdle for most people who actually do have it. It took me almost two years to figure out what was wrong with me and still today there are hints that I might have MS on top of fibromyalgia. It is hard to find because there is no blood test, MRI, or other diagnostic test to prove you have it. A doctor has to do an elimination process of other illnesses that fibromyalgia mimics. The two big ones are lupus and rheumatoid arthritis. It is important to be your own advocate too where your healthcare is concerned. Don’t be afraid to ask questions about suspected illnesses you might think you have that seem to be a lot like fibromyalgia. A good doctor will listen to you and take your concerns very seriously. If they are familiar with fibromyalgia they know the difficulty in diagnosing it properly.
IBS, irritable bowel syndrome, is not something I like talking about but it is a HUGE problem with most fibromyalgia sufferers too. This is why diet is a crucial part of adjusting to the illness too. They have to bring more fiber friendly foods into their diets so to avoid any major problems concerning the bowels.
There are many other things that I suffer with concerning fibromyalgia but at this point and time I just don’t have the energy to finish up with those things.
I have been living with fibromyalgia now for almost four years. I have only had a diagnosis for the illness about two years now. There is no cure for fibromyalgia so I will suffer with this for the rest of my life.
If there was any advice I’d give to someone newly diagnosed with fibromyalgia it would be to pace yourself every day, and be sure to do things for yourself to make your illness as easy to live with as possible. That will require some dedication to yourself that you may not possess. It may require you to finally put yourself first in situations you normally would not, but my advice is to do so. Not only do you deserve it, but also you will definitely need it.
Today I got a call from someone and they informed me that my oldest brother and his ex-wife are back together. The woman who called me had been with my brother for over 14 years.
The circumstances surrounding her and my brother’s relationship were hard for my family for a while so it took some time for her to be accepted into the family by some members. She was the other woman regarding the affair my brother had on his ex-wife.
The other woman I am referring to became apart of our family and even though it took some time she grew pretty close and attached to some of us. The question is how do we go forward now? She never married my brother, never had kids with him, but spent over 14 years with him.
I hated her at first. I was so angry that she slept with my brother who I put up on a pedestal. This all happened when I was just a teenager so you can imagine how emotional I was over this let down. I have always had this strong standing against married people having affairs. I think it is the worst thing to ever do and I don’t understand it. I was so passionate about (The passion about that hasn’t changed even at age 30) that so I refused to even think about this other woman being with my brother at that time.
My sister n law was crushed. The other woman was her best friend since middle school. My sister n law was like a sister to me. I loved her with all of my being, and that hasn’t changed even with things that have happened and changed over the years. I have thought about her all the time wondering about how she’s doing. (I will have to explain the estrangement of that relationship some other time or later on in this post)
Watching my sister n law go through this heartache made my passion against infidelity grow even stronger of course. Eventually my brothers’ marriage ended in divorce. My brother ended up staying with the other woman. He never stopped loving his ex-wife and he made that clear through the years. She was the one who filed for the divorce and he decided to give her what she wanted.
So, time passes by and my brother is living his life with the other woman D. His ex-wife A remarries a man and moves on. Finally, 12-14 years pass by and BAM things start changing. D moves out and my brother is on his own now. A, the ex-wife, files for divorce from her husband and tells my brother that she never stopped loving him…etc, etc.
R, my oldest brother, obviously is ecstatic about it and tells her to move in with the girls. (The girls are his kids by the way) She moves in with the kids. When I hear the news I am excited about it. I have to hold it back from D, the other woman, because I don’t want to crush her more then she is already. Deep down I think she knows I’m really happy about it. She has to know. She knew how I felt about A, the ex-wife, all these years.
I need a smoke break…
It has to be strange on the kids they are all grown up basically now. The oldest is 21, the next one is 17, and the youngest is I believe 13 or so. It will be strange on the rest of our family too for a little while too. Strange for me a little but boy am I so happy about the news. A, the ex-wife, is the only one I wanted back as a sister n law. I never wanted her to be out of our family. I even loved her family.
I know things won’t be the way they use to be…
Or will it? No, that is wishful thinking. I probably won’t have the close relationship with her like I did then…but boy wouldn’t that be nice?
I am planning on writing her a letter and sending it via my brother. I am going to do that tonight even though I should go get some sleep. I have so much I want to tell her that I haven’t been able to over the years.
Today was a good day with getting the news even though a heart was broken. A family was partly put back together and my dad would be so happy. My dad loved her, and her name is Angie. My dad loved her like a daughter. She was the one who had the talk with me about where babies came from…(chuckling to myself) I had asked my dad like I did with everything and he wasn’t sure what to say so he said well Angie will tell exactly where babies come from. She was so embarrassed I imagine. She did it though. She gave me the talk and over time my relationship with her grew very deep. She was a sister I never had, and she was a second daughter my dad never had. My dad loved her indeed. She went with us when dad took me to get my first dog, Bitz. Boy I’ve missed that relationship with her over the years. I regret burning that bridge and it is the only bridge I regret burning over the years.
I wonder if now, there will be a second chance, to attempt to rebuild that bridge somehow? I think I want to try. Really I do. Time to start with step one…the letter.
Until next time…
Be careful the bridges you burn
I had an appointment with my doctor last week and now I have to go in for a sleep apnea test. I do that on the 28th of this month. I also had to wear a heart monitor for 24 hours since I told her I had been feeling a fluttering in my chest. I still feel the flutter. I actually just had some fluttering going on as I started this post.
She thinks my constant headaches could be stemming from a sleep problem. The headaches I have are constant and just hang around. Sometimes the headaches turn into migraines but I have them 5 out of 7 days a week at least if not everyday.
I thought the headaches were a sinus problem. I suggested that to her and she said it could be but she is leaning more towards a sleeping problem since I wake up with them and they hang around. She also said since I have fibromyalgia having a sleeping disorder might just be the problem.
I haven’t heard anything yet about the heart monitor but I should be hearing something this week sometime. I had to turn it in on Friday morning.
Actually let me call her and see if any results are in…
Well they are supposed to be calling me back so I just wait. I sure hope it comes back ok.
Today I am very tired. My body feels like a semi truck hit me. I also have a headache that is just lingering around. It is very annoying. The joys of fibromyalgia! Want to join the club? Ha
I am nervous about the sleep apnea test. The test itself doesn’t worry me. I don’t like the idea of being in a different place over night away from my family. I don’t sleep well at home some nights so how the hell am I going to be able to sleep in a strange place with people watching me!? I hope they let me bring along my laptop and some movies. I’ll be so bored if they don’t. I have to check in at 9pm but I don’t go to bed until midnight. That is three hours of down time I have to figure out what to fill it with. Oh well, I’ll get the test done and it will be out of the way. Then we’ll be able to move onto the next thing we need to do.
The next thing she wants to do is put a scope down my throat! OUCH! That doesn’t sound fun at all. She thinks I might have an absorption problem. I keep going anemic and I’m not bleeding at all so something is going on. She also thinks that might be the root cause of my hair loss. She thinks B12, iron, and ferritin all combined is causing my constant hair loss. She said you could fix one but without fixing the others my hair would continuing to fall out. So I have to have blood tests done next time I go in which will be within the next few weeks.
I am going to go now and rest. I’m so tired today. I hope I get enough energy to run the vacuum later! I’ll keep you posted on the heart situation. Wish me luck.
Until next time…
Tonight I almost put myself into a panic attack. I went looking across the web for some information on children wetting their pants. I am having a problem with my oldest daughter, and it has been a continuing problem since I potty trained her. She is seven now.
My research led me to pages about bladder problems and juvenile diabetes. Reading over juvenile diabetes put a scare into me when I got to symptoms of the disease.
I do have a doctor appointment set for her next week. The appointment is to address this wetting problem. For a while we thought it was just a growth situation but now it seems to be something more since more time has gone by. It has been a substantial amount of time too.
What am I going to do if it turns out to be juvenile diabetes?
When she first started wetting back when I potty trained her I punished her and now I know I shouldn’t have. Her being my first child I was absolutely clueless on how to go about training her in the first place. When it got really hard for me and stressful over having no success I turned to support online. That is when I realized I shouldn’t have been punishing her. The guilt is still in me over that.
You have any idea how bad I will feel if she is medically impaired regarding this urination problem and knowing I’ve punished her for something she couldn’t control?
Gosh what a terrible parent I’ve been to her! I probably should have reached out to the doctor a long time ago instead of waiting too!
How will she take it if it does turn out to be juvenile diabetes? She is only in second grade!
It is going to turn our world upside down. I’ll have to learn how to cook properly for a diabetic, learn how to test her, teach her how to do it herself, and watch her through the pain. I have failed her folks.
I have allowed my daughter to go over a year with probably feeling low and humiliated over her wetting problem. I definitely have failed her big time.
There have been times I have gotten so frustrated over her wetting and I know it has shown even though I tried to hide it from her. What can I do to make this up to her? I wonder if she’ll resent me as she grows older like I resent my own mother for things my mom didn’t do for me?
God help me. God give me strength. God give me patience. God give me guidance.
If it does turn out to be juvenile diabetes for my oldest daughter, does that mean my youngest daughter will have it too? Something else for me to worry about…
Every night that I pray for my children this is what I pray, “Lord, please watch over my children. Keep them safe, warm and healthy. May you guide them like you guide me.”
I hope when I take her in next week the news I get is not juvenile diabetes. I hope it is just a bladder control problem that can be corrected or helped with medication.
Until next time…