Tuesday, November 9, 2010
"What are they doing for your blood pressure!"
They are filling me with more drugs...so far they are not doing much. I was in the hospital a couple of days Halloween weekend--couldn't breath! They did tons of tests as they were afraid it was my heart. Luckily my heart looks fine. I have been feeling horrible for a couple of months, with the breathing difficulties getting worse. I finally saw my PC again and he was worried and wanted a CAT scan. Since it was Friday he told me to go to the ER so he could get the results faster. Then the hospital decided to hold me hostage!
They are still not sure exactly what the problem is (perhaps chronic asthma and/or chronic bronchitis) and have sent me to a pulmonologist. That has me shaking in my boots because he is going to have a coronary himself when he sees my list of meds--and then he is going to take me off a bunch of them! I know he will and I don't know what I am going to do. We have worked so hard to come up with a mix that at least makes most days tolerable. Damn it, it never ends. He is also probably going to order another sleep study and they will find out the same thing they did last time -- I don't sleep. And, they don't know why or what to do about it.
Ah, the life of an overweight fibromyalgia patient. It is either because of the fat or the fibro. A pat on the head and out the door....
I really do hate my life. Sigh...I will try harder to lose weight. But the exercise has me stumped. I have so many other health problems along with the Fibromyalgia and Chronic Fatigue. So, please someone tell me, what can I do?
I am really down and so far passed tired I have no description of how tired I am. I haven't read much of my buddies' posts in the last month or more. I truly miss you, but I am so darn tired, by 1:00pm I am done in. The scary thing is though, I don't want to do anything, even read my dear friends posts, much less write one. It has taken the better part of two hours to write this.
I want you all to know I am thinking about you and praying for you, and worrying about you, too.
Saturday, October 9, 2010
My dear friend, Cathy, passed away from breast cancer a year ago this month. I spent the last eight months of her life helping her die. It was the most painful, glorious experience of my life. I only met Cathy 11 months before she passed. We were long lost sisters, we decided. We had so very much in common and could talk for hours about nothing -- or about... everything.
Her husband was a piece of work. He was the typical charismatic alcoholic. Everyone thought he was the greatest guy on earth, until he got behind closed doors. I came to learn over the later part of Cathy's life that he was both emotionally and physically abusive, too. He tired of caring for her, of the chemo and doctor appointments, of the housekeeping and cooking.
So, Cathy and I became best friends. I don't know how I made it thru it all, with my fibro, CFS, depression, and anxiety. But, God new where I was needed. He made it possible. He made it possible for me to sit with her for hours during chemo, spend the night on a narrow bench at the hospital, rub her back so she could relax and get some much needed sleep. Somehow He made it possible for me to comfort her when she was afraid of dying, speak of what my idea of heaven was -- when I was scared, too and had no idea if there truly was a heaven.
But, Cathy gave more to me than I could even think to give her. She was there for me, thru her pain, when I was hurting so about my crummy little life. She held me up when no one else was there, she worried about me and protected me. She stayed with me as I watched all my other "friends" walk away. She loved me. Unconditionally, faults and neuroses and all.
I miss Cathy so much. It hurts that we had so little time together. Cathy loved butterflies. At the hospice the doors of her room opened out into this lovely courtyard. A day or two before she left, a beautiful butterfly visited her on a day they were able to roll her bed outside. Cathy had tattoos of butterflies on each shoulder and on each ankle. My son-in-law happens to be a tattoo artist. I got it into my head that I was going to get a tattoo of a butterfly on my ankle for Cathy. They were here to visit last week and I finally got my tattoo. It hurt like hell!! Somehow, I think Cathy got quite a kick out of the whole thing. Not about the pain, about my stupid tenacity to go thru with it!
I saw a beautiful yellow and orange butterfly yesterday. I have no doubt it was Cathy come to say "Way to go." God, I miss her.
Wednesday, October 6, 2010
"I will never let go of
the fight to get well.
I will never let go
of hope that there will
one day be a cure.
I will never let go
of my "survivor" personality.
I will never calmly sit by
and give in to my pain.
I will never let go.
These words come from Rose. Rose, who always touches me with her words. Rose, who always checks in with me to see how I am doing--even in the middle of a family crisis. If you do not already read Rose, you really must. She gets it. She gets all of it, and she is still fighting.
I truly wish I could say, "Yes me too!", Rose.
But, I can -- not. I am feeling beat down. I have never thought of myself as a "survivor". I have never thought of myself as being strong--except when it comes to fighting for my kids. Do not cross me there.
I am feeling defeated. I have pretty much lost hope. I am holding on to what little hope I have by a thin, thin, worn and weary slip of thread.
I do not like feeling this way, but ... it is what it is.
It has been this way for a while. I don't think it’s my depression. It doesn't feel the same way. It feels like I have just come to face reality. This is my life. I am in constant pain. Pain that adds new body parts daily. A mere tap on the shoulder and I grab for my arm, wincing and trying to rub away the pain. And, the look from the person who just touched me. Puzzlement. Shock and surprise. And, then ... "You have GOT to be kidding!"
I am so tired, just so very, very, tired.
Friday, September 24, 2010
I really do not have the words for a proper introduction. You simply must go read it for yourselves!
THANK YOU, Jim for sharing your thoughts, and dare I say feelings (!). You give the other side of the conversation a voice, a voice that is rarely heard and is so important.
Monday, September 20, 2010
Ten of the Many Causes of My Depression…
Not necessarily in any particular order:
1. Unrelenting,"Un"-curable, Searing, Aching, Burning pain, Each and Every Day, Day in and Day out…
2. Unyielding, Relentless, Exhausting, Fatigue Day in and Day out Each and Every Day…
3. Uninformed, Un-supportive, Presumptuous, Judgmental, Impudent Medical Professionals...
4. Judgmental, Un-supportive, Deserting, Vanishing Friends…
5. Blood test upon blood test upon blood test, MRI's, x-rays, CAT scans, Nerve Conduction Study (NCS), electromyograms (EMG), Nerve Conduction Velocity tests (NCV), etc., etc., etc... All Tests Normal
6. Insomnia, Restless Leg Syndrome (RLS), Tossing and turning, Edginess, Un-restorative sleep, Up and Down All Night Long, Walking in my Sleep, Eating in my Sleep, Waking when I Fall...
7. Anxiety, Apprehension Uneasiness, Distraught, Tearful, Jumpy, Sensitive to noise, smell, touch, Ready to Jump Out of my Skin...
8. Loneliness, Despondency, Sense of Loss, Detachment, Self-made Seclusion and Isolation...
9. Failure, Useless, Hopeless, Inadequate, Ineffective, Afraid, Afraid of the Future...
10. Unfocused, Forgetful, Muddled, Disarrayed, Disorganized...
Depression rears its ugly head from time to time, most often without any warning. It is a constant battle. Unfortunately an unending one, much like Fibro and CFS.
Graceful Agony is having a Blog Carnival entitled "Who Turned Out the Lights?" examining the topic of Depression. It is very touching and thought provoking and most certainly worth your time.
CJ, in time
Saturday, September 11, 2010
A primer on Fibromyalgia (by CJ, my opinion, my experience only):
- You may or may not get the impression that it is "all in your head" from the first doctors you see. There are still some doctors who believe it is due to depression, unresolved life issues, and "soccer mom" syndrome. I recently saw another neurologist who was of that opinion. RUN, do not walk, away from them as fast as you can.
- Your GP should be able to refer you to a Rheumatologist who treats Fibro. The search for an appropriate doctor may take awhile. Be prepared and try not to become too discouraged. They can say things that can beat you down, but stand firm until you get a reasonable diagnosis and treatment plan. There are some wonderful doctors out there that truly care and want to help you manage your symptoms and reclaim at least some of your "old" life. Take copious notes! Or have a trusted family member or friend keep them for you. But, you stay on top of them.
- There are many approaches to treating the symptoms of Fibro. Some use natural or non-traditional treatments, herbs and the like. They may or may not work for you. Before trying any herbal remedy check with your doctor. One of the problems with herbs is that they can have very, very bad consequences when mixed with traditional medications. I am not dissing a natural, non-traditional approach at all. I am not promoting a traditional approach only. My experience has been that I AM IN UNBEARABLE PAIN. But, you need to know that I have at least two other serious incurable conditions that also cause chronic pain. I personally take four medications daily to manage my pain. Note I said "manage", I am still in pain each and everyday. The meds make my life livable (most days). I have tried both non-traditional and traditional treatment and I am using a combination of the two. How do you manage the unpredictability of the level of pain from one day to the next? Well, hopefully you have a "break thru" pain med that you do not take daily, only when you are experiencing a particularly rough day. This might be Tylenol 3, Darvocet, Vicodin, or Percocet. Take notes. Keep an up-to-date list of all of the meds--Rx or OTC--and the dosage you take with you at all times.
- Yes, the fibro drugs can make you a stumbling zombie. Try and give your body time to adjust and give any meds a fair chance (within reason, of course.) Warnings are included with all medications: READ THEM. Log your symptoms of possible side effects and report them to your doctor. The pain meds for nerves cause sleepiness. It may take a few weeks or more to adjust to them. These meds can be dosed for once a day, twice a day, or three times a day, with one, two, three, or four pills each time. As I say, it takes time. BUT, do NOT ignore side effects. They need to be reported ASAP! Take notes.
- You will probably need more than one doctor to manage this disease. Presently I have only two, my rheumatologist and my GP. But you may also see a pain management specialist, a physical therapist, a physiatrist (a doctor who specializes in physical medicine and treats the whole patient, not just the symptoms - I had a jewel of one, then insurance and finances stepped in!), or any of several other specialists.
- Now the hard one: "When will the pain stop?" The truth, probably never. However, you will find success stories of people who have come almost full circle and rarely experience the fibro pain. Unfortunately, these are hard to come by. The pain can, however, be managed. Some days quite well, some days not so much.
I am praying for you in all manner I can think of. I am here for you. I hardly know you, Celia, but you have touched my heart in a very special way. I care and I would like to help in any way I can.
Gentle hugs with fondness,
A Disclaimer to anyone else reading this: I am not a doctor. I am not prescribing nor am I diagnosing anything. I am a Fibromyalgia and Chronic Fatigue patient. PLEASE, see your doctor if you have any concerns or symptoms.
Friday, September 10, 2010
I have been, and I still am, in a very hard place. Your words have comforted me more than you could know. Its funny, I really don't find it difficult to open up here in this place of absolute wide open public exposure. I find that rather astounding, don't you?
Well, you shouldn't. It is because of you that I feel safe and protected and un-judged. Yes, I know there is no such word (well, in most dictionaries), but there certainly is the feeling. I know that no matter what I say, you will not judge me. I am simply saying how I feel and what I am thinking. Unvarnished, unadulterated, bold faced truth. My truth, anyway, at a given point in time. And, I thank you so much for allowing me that. Somehow it lifts some of the weight of the unending pain and exhaustion.
Your comments don't make the pain go away. They don't refresh the unyielding fatigue. But, they sure do fill me up. They fill me with up with a warmth of support and understanding. They make me smile, they touch my heart. They do revive me to fight thru another minute, hour, day.
So, thank you. Thank you 100 times over for taking the time to leave a little bit of you with me -- to help me persevere, to keep me company, if only for a moment, and to help me lean back from that slippery, dark, deep hole.
Saturday, September 4, 2010
What is the point in living this way? I am barely able to do the stupid little things everyone must do--grocery shopping, going to the bank, paying bills (hopefully on time), laundry. That is it. That is pretty much my life. The rest is spent sitting on the couch watching TV. It hurts to hold the phone up for very long at all, I'm on my 8th or 9th set of head phones. It hurts to hold up a book, a magazine, a newspaper. It hurts too much these days to do this--type or browse on the computer. My neck and shoulders are on fire with pain. My shoulder muscles are hard as a rock, my neck pinches with every move.
What is the point? I am soon to be 56 years old, but I feel 86. I truly think I should stay put and let my husband start a new life in New Orleans. If I suggested it he would say no way, because he is that kind of guy. But if he was honest with himself he would love the opportunity. I am not the person he married, have not been for years. He would not be leaving me, he'd be leaving what I have mutated into.
I hurt in every cell in my body. I have already taken all of the medicine I can. I guess I will go for the ice and heating pad and maybe a rum and coke. Yeah, I know what most of the 24 meds I take say on the bottle. But really, what possible difference could it make?
CJ, lost in time
p.s. Don't call the cops. I will not do anything. My son and I live here alone and I would never do that to him.
Friday, August 27, 2010
The most recent one I found is both alarming and encouraging. Titled "Changes in Gray Matter Density in Fibromyalgia: Correlation With Dopamine Metabolism" Simply put, we have "holes" in our gray matter in the areas of the brain that correlate to the symptoms of fibromyalgia including "enhanced pain perception, cognitive dysfunction (fibro fog), and abnormal stress activity." The author states that this "confirms our previous findings that FM is associated with altered brain morphometry (neuroimaging that investigates the differences in brain anatomy)." [By the way, my son adds this cheery fact: gray matter regenerates, white matter does not ; ) ]
"The proposition that a disruption of normal dopaminergic neurotransmission may make a substantial contribution to the pathophysiology of FM was initially based on 3 key observations: (1) FM has been characterized as a “stress-related” disorder due to its frequent onset and apparent exacerbation of symptoms in the context of stressful events; (2) the experience of chronic stress results in disruption of dopaminergic activity in otherwise healthy organisms; and(3) dopamine plays a dominant role in natural analgesia within multiple brain centers. From: An Elephant Among Us: The Role of Dopamine in the Pathophysiology of Fibromyalgia
The Dopamine Deficiency Theory proposed by Dr. Patrick Wood began with his first pilot studies in 2005. Though his study discussed here was done in 2007 it was not published until June of 2009. I find that lapse in time very discouraging, but I suppose it is typical of the "wheels of progress". At this rate I figure they will have something approved as treatment in another ?!?!, how many years???
But, the encouraging part? They have actually found something that they can point to and say "See, there is something different here. There is a tangible, medical connection that can be seen." It is all in our heads---but they can see it now!!! YEA! And, they are using medications now that act on dopamine and dopamine deficiencies. I believe that what is needed is a more focused approach to determine what a successful treatment strategy will be.
Below are some of my other favorite publications that I have found helpful in my quest to learn more about FMS/CFS. I hope you find them helpful, too.
The Fibromyalgia Network
The Fibromyalgia Network is a patient-advocacy organization that offers up-to-date research and treatment information, including treatments that are in the developmental stage. All of the materials published are free of any advertisements or unfounded, unsubstantiated, or spurious “cures” and “therapies”.
Membership is $28.00 per year and includes Monthly eNews Alerts, Patient-endorsed physician referrals, Support group listings, Participation in surveys, input into future article topics including their Q&A Column, Free articles and brochures, and of course, Privacy protection.
Adrienne Dellwo, About.com Guide to Fibromyalgia & CFS
Adrienne suffers with fibro, too. She writes this blog having a background in both TV and newspaper journalism and experience researching and writing about health-related issues. She has the resources of About.com and their medical experts to bring the newest information about FMS/CFS to her blog. Her story about life before a diagnosis is a good read.
The CFIDS Association of America
The CFIDS Association of America is the largest and most active charitable organization dedicated to chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS). CFIDSLink, the free e-Newsletter of the CFIDS Association of America is sent to your email account at the beginning of each month. To sign up to receive this newsletter, click here.
Here's wishing you a comfortable, restful, and joy-filled weekend,
Thursday, August 26, 2010
Perfectionist : A perfectionist is someone who lives with a constant sense of failure because their achievements, no matter how impressive, don’t ever feel quite good enough.
Unfocused, Unable to Concentrate
Do you recognize yourself? Well, it fits me to a t or to a tee, depending on your take on the phrase. (I googled it and read 8-10 answers--which explains A LOT about me!)
I have been absent from my blog for a variety of reasons (see all of the above). I have also been HURTING, as have many of you ---what is up with this summer? I have been sick with a stomach bug and my husband came home for a short visit. And, I don't know what to write about. I have several ideas, some even started in draft form waiting in line for me to DO something with them.
I am not sure what is wrong with me. I had told Rose that I feel pressure to write, to write more. Most of you write almost everyday, if not 3-4 times a week. I average once a week. Is that acceptable? I don't know. It really isn't to me. I feel like I am an insult and embarrassment to the rest of you. I feel inadequate. I'll tell you, I don't need any more help to feel like that. My inability to do anything useful because of my health is plenty enough fuel for that.
I know what is going to happen now. All of you wonderful, supportive, caring people are going to tell me it is alright and I am doing fine. Please know that I am not fishing for support. I am just laying it out there--what I feel. It is what this blog allows me to do. Be honest. Painfully honest.
I have found that my most recent posts have touched people in a way I had not imagined. I have been able to verbalize what some have been feeling, feelings they have not been able to express on their own blogs because of who has access to their posts. I have purposely tried to keep my blog as anonymous as possible so that I am able to speak my mind. I do not have anyone I can share these feelings with. You are my closest friends. You understand what I am going through, you know how tough it is, how painful and exasperating it is. You know the firestorm of emotions that I live with, that I must control. You know the unconscionable remarks and behavior of others I must endure because of their ignorance of chronic illness. And of their unwillingness to learn or to listen or to try, just try to understand.
I have not told any of my family how they can find my blog. Not even my sister who also has Fibro. I hope that's not too selfish. But, I need this for me.( She could start her own if she wants to. It wouldn't necessarily end up connected to me and my online group. I guess I would deal with it if it did.) If she read my blog everyone in my family would soon know what I had said or what I was thinking or feeling. No, she is not a gossip. You know how it is though, stuff just comes out. I cannot risk that. I need this lifeline.
So here, CJ. You have a new post, rambling though it is. Woo hoo for me. But, I do hope this explains a little bit more about me and about what has been going on with me recently.
It is what it is.
Hugs with fondness and appreciation,