Also, here is the link to the CVID questionnaire results:
Sorry for dropping the ball guys :)
Kelli
Showing posts with label Illness. Show all posts
Showing posts with label Illness. Show all posts
Sunday, January 22, 2012
Questionnaire Results
So I realized that I have never published a link to our questionnaire results. How silly of me. The point was to have this so people could actually print it out and take it to their docs if needed, or help them to create a dialogue with their physicians. Here is a link to the responses for IVIG & Subq side effects & tips:
Sunday, August 7, 2011
IVIG & SubQ Side Effects
As promised to my CVID support group, here is the completed form for IVIG and SubQ side effects as well as suggestions for people at the end of the form. I personally went through HELL with my first doctor and side effects from IVIG. I do believe I had one of the longest running posts on healthboards.com. What I wouldn't have given to have somewhere to read about the side effects that were not published, that my doctor could have read before she stopped all treatment because she couldn't "risk" it. I really hope this helps people in some way.
*NOTE: You can scroll to the bottom of the form and there are bars that will allow you to center it so you can read the entire series of questions.
*NOTE: You can scroll to the bottom of the form and there are bars that will allow you to center it so you can read the entire series of questions.
Wednesday, February 23, 2011
Just...Breathe
About 8 months ago my life suddenly got...difficult. Saying that is sort of funny because I am a single mom, I work full time and I have a Primary Immune Deficiency. So, for me to say that it got hard enough to be considered difficult must be bad right? Right. In June of 2010 I got sick. Ok ok I know I have been talking about it but not really sure if I have covered how long I have been sick. Since June people....of 2010! It started as fatigue, like choose to brush your hair or your teeth before you go to work fatigue. I kept going to work, shaking it off. June 18, 2010 after a meeting at work, I left saying I would be back in a day or two. It is now almost March of 2011. I went out for 6 weeks with supposed Valley Fever and went back to work. I got sicker, and sicker and sicker. During these few months I was back at work, my hair fell out, I was diagnosed with Fibromyalgia, I lost weight, couldn't remember things. It. Was. Bad. I went out again in the end of October. Then in January, well I finally received my diagnosis and talk about it here and a little more in depth here.
Here's the thing...last week I was sitting in my daughters counselors office ranting...yes I admit I was ranting, about HOW I HAD to get Jalen lined out and listening NOW because I was getting ready to start taking mass amounts of steroids and I didn't want to freak out on her. It was at this moment that I was given perhaps some of the best advice I could have ever been given at that VERY moment. The counselor told me to just...get through it. Huh? Can you repeat that? He said sure, let me break it down: If lil Miss Jalen wants to go to school with her hair all GHETTO, then let her. Don't lose your mind over it. If she wants to be mismatched, paddy whacked, dressed like a FOO...then let her. Just. Get. Through. This.
Could it really be so easy? Its kind of like the "fake it till ya make it" theory that I used to apply to smoking. I quit smoking no less than 10 times. When I would start slipping I would..."fib". Not really lie, just, with hold. I was faking it damit until I could make it! No one needed to know each time I failed because if anyone knows me they know I already beat myself up way worse than anyone else ever could! This could be the key to get through the hell of the steroids, the Devil Drug, Satan's Substance. If I could feel like I was actively participating in getting through this, like I was DOING something...it may work. All I have to do is remember to breathe.
So what may have started my fractured, nonsense, venting little blog tonight you may ask? I was watching a movie called The Backup Plan with Jennifer Lopez. It was SO funny! On a side note, I have NO FREAKING idea who is rating these movies PG-13 but they should be fired. Oh and side note 2 I had to explain what artificial insemination was to my 7 year old mister person who USED to rate movies! Gawd! Reeling back into the story...in the end...I was crying. It's a comedy. Errrrr so I guess thats the steroids?
The crying got me to thinking "hey what the hell am I crying for"? Because I needed to laugh. I needed to relate. I needed to connect. I NEED to connect. I need to have some drinks and let my hair down and laugh. I need to laugh. I need to breathe. I just have to remember to breathe and just get through this.
If this post has helped one person retain their sanity then my work on earth is done. Amen.
Special K
Here's the thing...last week I was sitting in my daughters counselors office ranting...yes I admit I was ranting, about HOW I HAD to get Jalen lined out and listening NOW because I was getting ready to start taking mass amounts of steroids and I didn't want to freak out on her. It was at this moment that I was given perhaps some of the best advice I could have ever been given at that VERY moment. The counselor told me to just...get through it. Huh? Can you repeat that? He said sure, let me break it down: If lil Miss Jalen wants to go to school with her hair all GHETTO, then let her. Don't lose your mind over it. If she wants to be mismatched, paddy whacked, dressed like a FOO...then let her. Just. Get. Through. This.
Could it really be so easy? Its kind of like the "fake it till ya make it" theory that I used to apply to smoking. I quit smoking no less than 10 times. When I would start slipping I would..."fib". Not really lie, just, with hold. I was faking it damit until I could make it! No one needed to know each time I failed because if anyone knows me they know I already beat myself up way worse than anyone else ever could! This could be the key to get through the hell of the steroids, the Devil Drug, Satan's Substance. If I could feel like I was actively participating in getting through this, like I was DOING something...it may work. All I have to do is remember to breathe.
So what may have started my fractured, nonsense, venting little blog tonight you may ask? I was watching a movie called The Backup Plan with Jennifer Lopez. It was SO funny! On a side note, I have NO FREAKING idea who is rating these movies PG-13 but they should be fired. Oh and side note 2 I had to explain what artificial insemination was to my 7 year old mister person who USED to rate movies! Gawd! Reeling back into the story...in the end...I was crying. It's a comedy. Errrrr so I guess thats the steroids?
The crying got me to thinking "hey what the hell am I crying for"? Because I needed to laugh. I needed to relate. I needed to connect. I NEED to connect. I need to have some drinks and let my hair down and laugh. I need to laugh. I need to breathe. I just have to remember to breathe and just get through this.
If this post has helped one person retain their sanity then my work on earth is done. Amen.
Special K
Sunday, February 20, 2011
Granulomatous Lymphocytic Interstitial Lung Disease (GLILD)
Description courtesy of National Jewish Hospital
Interstitial lung disease (ILD) is a broad category of lung diseases that includes more than 130 disorders characterized by scarring (i.e. "fibrosis") and / or inflammation of the lungs. ILD accounts for 15 percent of the cases seen by pulmonologists (lung specialists).
In ILD, the tissue in the lungs becomes inflamed and / or scarred. The interstitium of the lung includes the area in and around the small blood vessels and alveoli (air sacs) where the exchange of oxygen and carbon dioxide takes place. Inflammation and scarring of the interstitium disrupts this tissue and leads to a decrease in the ability of the lungs to extract oxygen from the air.
The progression of ILD varies from disease to disease and from person to person. It is important to determine the specific form of ILD in patients because what happens over time and the treatment may differ depending on the cause. Importantly, each person responds differently to treatment, so close monitoring during treatment is important.
I have a form of ILD called GLILD. I was told this is a particularly rare form caused by my immune disease - Common Variable Immunodeficiency. It can kill me. Crazy huh? Say it again but say it as if it's you: It can kill me. Let me expand. If I get sick - flu, sinus infection, anything - and it goes to my lungs, it can be life threatening. ISN'T THAT INSANE? Ok ok ok. I wanted this to be informative and not all about me lol
Precautions must be taken into consideration with this form of ILD. You can do one of several things:
- Go into hiding from the world so you don't get contaminated and die
- Go on living life to the fullest not taking any precautions and get sick and die
- Find an equal middle - this mid point will be different for everyone.
Some precautions can be:
- Wiping down carts with antibacterial wipes ( I carry travel size in my purse at all times)
- Wearing masks in the wind
- Carrying your own pen around to sign things ( I must sign my child in/out of daycare daily)
- Hand washing
- Hand sanitizer
- Educating your family
- Avoiding sick people or taking precautions when immediate family members are ill
- Avoiding crowds - bars, concerts, children's classrooms
This is not by any means an exhaustive list. I even have suggestions for work environments but am hesitant to post until I live my own situation.
Treatments can vary. It is important to know that it appears that doing nothing, is the wrong way to go. This is progressive. I first became ill in June and was initially diagnosed with Valley Fever. A biopsy was done and NO Valley Fever spores were found but they kept treating me. At some point the infectious disease expert told the pulmonologist he did not feel it was VF. He told us this twice yet the pulmonologist kept treating me for it. Fast forward. When I went to National Jewish Hospital they told me that the CT Scans from June 2010, October 2010 and January of 2011 all progressively got worse. Fabulous right? Doing NOTHING is the wrong thing to do. The damage with MY type of ILD is irreversible. Medications can vary. Popular among doctors are high doses of steroids. This drug covers a wide range of illnesses and doesn't need to attack and kill anything particular. There are some new treatments out there that are also being used such as Rituxan (if you have B Cells causing the chaos in your lungs) and Imuran (for T Cells). Steroids are KNOWN for being bad bad news. They cause wild mood swings, significant weight gain, sleeplessness. This is the treatment approach they are taking for me. Bummer I know. I am armed with an arsenal of questions for my family doctor and a long list of additional medications such as Foxomax for osteoporosis, Calcium with Vitamin D for bone loss, multivitamin, Xanax to help me sleep and possibly something stronger as it isn't working so well, Ativan is on standby in case I lose my marbles and go into a rage about something. Scary huh? Um yeah.
I think I will be chronicling my experience with the medications and tips and tricks I have for steroid use. I've already tried to buy food that is lower in sodium. Man that stuff is in EVERYTHING. Ridiculous. I'm starting to exercise everyday. Weight gain will be my enemy. Moon face is probably unavoidable but I will be asking doc about Lasix as well.
I also started a support group for people with ILD. I couldn't find one. I think its important. Very important as most people have no idea what it is like to walk around every day wondering if that sneeze you just walked through is the one that will kill you. You can find the support group here at: http://www.dailystrength.org/groups/interstitial-lung-disease
Goodbye for now.
Much love,
SpecialK
Monday, January 24, 2011
Well, it's a doosie
I have been absent for a minute now and thought it may be a tad therapeutic to blog. I did, after all, start this blog for me...as a journal of sorts. A way to get all my antics on paper (or screen if you will), share my recipes with perceived secret admirers and a brag box about my baby. And lets face it, it's a whole lot less expensive than a therapist.
So, today is Monday. I just got home from National Jewish Hospital on Saturday. I've had a whole two days to let it sink in that I have a lung disease. A very rare, life threatening lung disease. I could go on living my life as if I had never been told this news. That is what I would normally do, honestly. Ahhh, but one thing. This:
My dorky lil sassafrass. Ok ok this picture isn't exactly NEW but look at her face! How can I go on living life, not protecting myself when I have this every day? So now the question is...how do I change our lives drastically, yet live like we are normals? Normals would be ya'll with no health issues :)
I was told in Colorado that I cannot get sick. I cannot be around sick people. Period. If I get the flu and it goes to my lungs, it could be life threatening. Any illness that decides to move to my lungs, could be life threatening. Crazy huh? So I have a malfunctioning immune system already due to the Common Variable Immune Deficiency and you tell me not to get sick? Ok. Then you tell me I can no longer help out in my childs classroom...ever. I've already had a couple people tell me it's no big deal, it's not the end of the world. They are right. But it was a big deal to Jalen and I. When you are a single parent, those moments are HUGE to a child. Obviously my daughter doesn't know the whole story. Just that mama cannot get sick and I need her to do her job and use hand sanitizer and sneeze in her elbow.
Work is still the unknown...I decided to make an appointment with my family doctor for tomorrow. I trust him. He will tell me if I should or should not go back to work, how long, etc. He has known me the longest, been with me since before the CVID diagnosis. Here's the thing...who am I without a job? I used to think I had a good portfolio. I had a banging job, own my own home, independent, strong, blah blah blah. Now? I feel....sort of worthless. More burdensome than having a single thing to offer another human being. Sad isn't it? But, today that is how I feel. I am just a mom. Thats it. And not even doing that well now. I even told my ex boyfriend when he called to check on me, I am on effin oxygen, I am going to be single the rest of my life! Sitting here typing this and re-reading it...I can't breathe. The thought of losing it all is taking my breath away. I worked so dam hard to get where I am today, to be told in the blink of an eye, everything I worked for is going to go away. My good credit, because I will likely have to file bankruptcy. My good reputation because now I am likely going to be on disability. My "look what I have to offer" because I am chronically ill, who would want me.
You know what it boils down to? P.R.I.D.E. It's true. God gave me these things and is now allowing them to be taken away. I have no idea why but I do realize it is a pride issue right? I mean, I will still have a home and still wake up every day, God willing....so what else could it be besides pride? Man either that or I am being punished, tested, something. I haven't figured it ALL out yet. Maybe its a little of all of them. Pride, punished, tested...they all suck really. I WILL figure it out. I have to. I have something in this world way more important than me and she is only 7. I won't go on acting like nothing is wrong. I will be safe, stay out of crowds and try my hardest to not get sick. I will figure out a way to make this new diagnosis..workable. I'm just not sure how yet.
So, today is Monday. I just got home from National Jewish Hospital on Saturday. I've had a whole two days to let it sink in that I have a lung disease. A very rare, life threatening lung disease. I could go on living my life as if I had never been told this news. That is what I would normally do, honestly. Ahhh, but one thing. This:
My dorky lil sassafrass. Ok ok this picture isn't exactly NEW but look at her face! How can I go on living life, not protecting myself when I have this every day? So now the question is...how do I change our lives drastically, yet live like we are normals? Normals would be ya'll with no health issues :)
I was told in Colorado that I cannot get sick. I cannot be around sick people. Period. If I get the flu and it goes to my lungs, it could be life threatening. Any illness that decides to move to my lungs, could be life threatening. Crazy huh? So I have a malfunctioning immune system already due to the Common Variable Immune Deficiency and you tell me not to get sick? Ok. Then you tell me I can no longer help out in my childs classroom...ever. I've already had a couple people tell me it's no big deal, it's not the end of the world. They are right. But it was a big deal to Jalen and I. When you are a single parent, those moments are HUGE to a child. Obviously my daughter doesn't know the whole story. Just that mama cannot get sick and I need her to do her job and use hand sanitizer and sneeze in her elbow.
Work is still the unknown...I decided to make an appointment with my family doctor for tomorrow. I trust him. He will tell me if I should or should not go back to work, how long, etc. He has known me the longest, been with me since before the CVID diagnosis. Here's the thing...who am I without a job? I used to think I had a good portfolio. I had a banging job, own my own home, independent, strong, blah blah blah. Now? I feel....sort of worthless. More burdensome than having a single thing to offer another human being. Sad isn't it? But, today that is how I feel. I am just a mom. Thats it. And not even doing that well now. I even told my ex boyfriend when he called to check on me, I am on effin oxygen, I am going to be single the rest of my life! Sitting here typing this and re-reading it...I can't breathe. The thought of losing it all is taking my breath away. I worked so dam hard to get where I am today, to be told in the blink of an eye, everything I worked for is going to go away. My good credit, because I will likely have to file bankruptcy. My good reputation because now I am likely going to be on disability. My "look what I have to offer" because I am chronically ill, who would want me.
You know what it boils down to? P.R.I.D.E. It's true. God gave me these things and is now allowing them to be taken away. I have no idea why but I do realize it is a pride issue right? I mean, I will still have a home and still wake up every day, God willing....so what else could it be besides pride? Man either that or I am being punished, tested, something. I haven't figured it ALL out yet. Maybe its a little of all of them. Pride, punished, tested...they all suck really. I WILL figure it out. I have to. I have something in this world way more important than me and she is only 7. I won't go on acting like nothing is wrong. I will be safe, stay out of crowds and try my hardest to not get sick. I will figure out a way to make this new diagnosis..workable. I'm just not sure how yet.
Friday, December 17, 2010
CVID Symptom Questionnaire
Well it sucks I even thought to do this. But I did. CVID is called variable for a very good reason. This disease varies WIDELY among people. Response to Ig varies widely. For me, it was a miracle. I say that but even though I almost never get sick anymore, here I sit on disability, waiting to go to National Jewish Hospital to see if I have a lung disease caused by...you guessed it! CVID! Ok, no digressing here lol. I am on an amazing online support group on Daily Strength for people with CVID. We talk. Boy do we talk. About everything under the sun, including our symptoms. Symptoms no doctor ever mentioned that we would have. Then, we started seeing a trend. I thought how awesome would it be to track this stuff. Guess what? So far 100% of people, WHO RESPONDED TO THIS QUESTIONNAIRE, have asthma. About 50% have below normal temperature. Very cool stuff. Ever heard of hydradenitis superativa? We have. ITP? Common pre-cursor to CVID. So, in an effort to keep the form alive and the responses easy to find and not to get lost in threads on a support group...I am putting it here. WARNING: IT WILL NOT LOOK PRETTY. Due to the layout of my blog it probably will look all off. But I don't care and you shouldn't either lol. Here it is and the response summary link will be below that:
Now the responses:
http://spreadsheets.google.com/viewanalytics?formkey=dHZVUkctM2NxNFllZFZtMF93RE9wX3c6MQ
PLEASE feel free to comment or even join our support group at:
http://www.dailystrength.org/c/Common-Variable-Immunodeficiency/support-group
http://spreadsheets.google.com/viewanalytics?formkey=dHZVUkctM2NxNFllZFZtMF93RE9wX3c6MQ
PLEASE feel free to comment or even join our support group at:
http://www.dailystrength.org/c/Common-Variable-Immunodeficiency/support-group
Tuesday, December 7, 2010
Lupus skin biopsy
Ok, I had to stop by real quick and tell ya about my biopsy. OMG I AM FREAKING TRAUMATIZED LOL I had to go to the dermatologist today to have him take a look at my head because of this:
Yes, my dang hair has been falling out in BLOBS people. Most of you know this as I am not shy about anything. Well, and I am PRETTY vocal. I have all the symptoms of lupus: Hair loss, fatigue, memory issues, pain, rash, swelling, etc. I either make little or no antibodies so testing positive for lupus may be impossible.
So in the beginning, this guy was running his fingers through my hair very thoroughly. Have I mentioned I have not dated in a couple of years? I considered this a date hehe. Mind you the hair is falling out all over him. Then he quickly states he needs a biopsy.
Have you ever had a needle stuck in YOUR scalp? Ok let me back up. I GOT the pleasure of watching him do my arm. Needle in for numbing. Blood. Another guy comes in to talk to me about Botox for my wrinkles and surgery on my cleft lip (if you think you are confident, go see a dermatologist and ask about ONE DAM WRINKLE). I look down and homeboy is cramming a hole punch into my arm. Whatever in the world made me think this would be a little sliver of skin? No. Then comes the curved sewing NEEDLE. Omg. I've never seen stitches before. Very cool. At this point, I feel it completely appropriate to tell this stranger I am NOT emotionally ready. It's just like a pap smear (sorry Mike) you MUST be emotionally ready to go through the procedure. I was not emotionally ready, can we please wait? Then. Lawdy...then he puts the needle in my scalp. Which by the way didn't hurt nearly as bad as the arm. Hole punch to the brain. Then the blood. Yep. The worst part? The stupid little band aid they tried to put OVER the stitches in my hair.
Ok. I'm done whining.
You guys must love me to let me whine so much.
Special K
Sunday, November 14, 2010
10 Commandments Of The Chronically Ill
I read this on one of my forums for Common Variable Immunodeficiency. BOY oh BOY! If you are chronically ill, you will be able to relate to each and every one of these commandments I assure you. If someone in your life is chronically ill or THINKS they are ill, please I beg you, read this.
10 Commandments for interacting with the chronically ill
1. Thou Shalt Not Imply That We Are Not Truly Ill.You will not convince us otherwise with remarks such as, “You LOOK good,” or “But you don’t LOOK sick.” Even if you meant them as compliments, we perceive those kind of statements as insults because they imply that you do not believe us.
2. Thou Shalt Not Imply That The Illness Can Be Easily Fixed.People with chronic illnesses are persistent, if nothing else. We hang on, day after day. We see countless doctors, take numerous medications, do endless research, and continue hoping that the answer is just around the next corner. So please do not insult us by delivering diagnoses, remedies, or comments such as, “Why don’t you just...” or “Have you tried...” or “You should....” If it truly were that simple, I assure you that we would have done it already. We are sick, not stupid.
3. Thou Shalt Not Imply That We Brought This On Ourselves.We did not choose to become ill, just as we do not choose to stay ill. Simply having a positive attitude is not going to solve our problem. One would never imply that a quadriplegic chose such a trial for themselves, or could get better “if they really wanted to”. Please afford chronically ill patients the same respect.
4. Thou Shalt Not Insult or Argue With Our Limitations or Behaviors.If people with chronic illnesses push ourselves too hard, we can suffer serious consequences. Most of us have developed coping mechanisms to help us survive, and it is cruel to expect us to do more than we are able. One chronically-ill woman I know was actually told, “I wish I could have the luxury of sleeping all day.” Believe me, we would much rather be out working, playing, spending time with loved ones, participating in normal activities.
“Sleeping all day” is not a luxury for us – it is a critical necessity, one that we must take in order to protect whatever remaining health we have. Perhaps it may help to think of it in terms of being one of the medications we need to take. If you wouldn’t think of denying a diabetic their insulin, then don’t think of denying the sufferer of a chronic illness their critical need, whether it is a mid-day nap, avoidance of certain foods or environmental factors, or something else.
5. Thou Shalt Not Imply That You Can Relate To What We Are Going Through.Unless you have a chronic illness of your own, you cannot possibly understand just how much suffering is happening. Of course you want to be compassionate and want to relate to people. But when you try to do this by telling a chronically-ill person that you are always tired too, it tends to make the person feel that you are minimizing their suffering. Try saying something more along the lines of, “This must be so hard for you,” or “I can’t imagine what you’re going through.” It really does make a difference to us.
6. Thou Shalt Be Mindful Of Other Family Members.
Chronic illness doesn’t just affect the person who has it, but the whole family as well. The trauma of the illness can evoke feelings of fear, depression, anger, and helplessness in all family members. The balance of family dynamics will most likely change, especially if it is a parent who is ill. The healthy spouse may end up taking on an overwhelming amount of responsibility, and even children will likely be involved in helping care for the ailing family member. Please keep these others in your thoughts as well, and make an effort to direct some special attention to them, without any mention of illness or disability.
Chronic illness doesn’t just affect the person who has it, but the whole family as well. The trauma of the illness can evoke feelings of fear, depression, anger, and helplessness in all family members. The balance of family dynamics will most likely change, especially if it is a parent who is ill. The healthy spouse may end up taking on an overwhelming amount of responsibility, and even children will likely be involved in helping care for the ailing family member. Please keep these others in your thoughts as well, and make an effort to direct some special attention to them, without any mention of illness or disability.
Individual family members adjust in different ways and at different paces. All members might benefit from counseling to help handle the stress involved, and each family member also needs to have time to pursue their own individual interests. External support from friends, neighbors, extended family, religious institutions, and support groups may help ease some of the burden.
7. Thou Shalt Acknowledge Our Efforts and Celebrate Even Our Small Successes With Us.For the chronically ill, any day that we can accomplish a task, no matter how small, is a “good” day! Our lives are often measured in terms of doctor’s visits and lab work, and our “success” measured by a rise in Natural Killer cell counts in our blood, or actually completing an entire load of laundry in just one day. Please do not look at us as if we are joking when we share these celebratory moments with you. Celebrate with us, be happy with us, and do not kill the moment by announcing that you just completed the Ironman Triathlon in record time.
8. Thou Shalt Offer Thy Specific Help.There are so many ways to help -- the most difficult part is usually getting a chronically-ill person to accept that help. They do not want to feel like a “burden”. If you offer a vague, “Call me if I can help,” the call will probably never come. But if you are sincere, consider extending offers of specific help, such as a ride to a doctor’s appointment, or picking up a few groceries or the dry cleaning. These activities can be done in a way that does not add any extra burden to your own schedule. If you have to go to the grocery store for your own family, it really isn’t much extra work to grab an additional loaf of bread and jug of milk. If you have to swing by the post office, getting an extra roll of stamps or mailing an additional package isn’t much extra effort for you – but it can save a chronically-ill individual a lot of time, energy, and exacerbation of symptoms.
9. Thou Shalt Remember Important Events.I’m not just talking about birthdays and Christmas. A major doctor’s appointment, lab test, or new medication are all important events to the chronically-ill person. Try to sincerely ask, “How was your appointment? How did the lab test go? How’s your new medication?” The chronically-ill person will appreciate that you remembered, and that you cared enough to ask about it.
10. Thou Shalt Get To Know The Person Behind The Illness.The illness may be a part of us, but it’s not a part of who we ARE. We want to be known as more than “that sick person”. You may discover that we have a wickedly funny sense of humor, a creative imagination, musical talents, or any number of things that better describe who we are, and what we would rather be remembered for. (It makes for better gift ideas too -- rather than presenting us with yet another self-help book on the power of positive thinking, now you can give us a CD from our favorite singer or movie of our favorite actor instead.)
Most of all, please remember that the chronically-ill person is more than worthy of love, friendship, and support. Most chronically-ill people I know are the toughest nuts I have ever met. Indeed, I have come to believe that a chronic illness is not for wimps – rather, only the toughest of the tough can continually face the struggles of life while battling a debilitating disease. That kind of grit deserves nothing less than pure respect and admiration, even from our toughest critic -- ourselves.
Tuesday, November 2, 2010
How I Treat CVID
Dr. Charlotte Cunningham-Rundles is a leading researcher on Common Variable Immunodeficiency. The article that was sent to me, was amazing. Confusing as the woman is obviously slightly genius-y. Of particular interest, for me anyways, is the section on Chronic Lung Disease and Granulomatous/lymphoid infiltrative disease.
http://bloodjournal.hematologylibrary.org/cgi/content/full/116/1/7
I hope this helps someone to understand. It is so hard to find information out there that isn't, well, repetitive.
http://bloodjournal.hematologylibrary.org/cgi/content/full/116/1/7
I hope this helps someone to understand. It is so hard to find information out there that isn't, well, repetitive.
The Art of Pain
There is a certain aspect of chronic illness that "normals" can not possibly understand because, they are, well...normal. It seems so long ago that I too was normal. This was when I used to get my once a year bout with bronchitis. Wow. I thought that would kill me lol Boy if I only knew what was in store.
People are typically very pleasant upon seeing someone they know. The first thing out of their mouth is usually "how are you". How ARE you. How are YOU. Any way you emphasize it, this is a tricky response for a lot of us. My best friend asked me this seemingly simple question not two days ago. My reply? I am fabulous! She said "really" haha. YES really!
Here is my whack-a-doodle theory. People ask the above question but only mean it half heartedly. They really do not want the full spiel of how we are physically and mentally. I feel chronic illness confuses people and leaves them without truly knowing what to say to us. Depending on your particular illness, it can be VERY confusing. I have CVID and now have developed a lung disease known as GLILD and am waiting to go to National Jewish Hospital in Colorado for a diagnosis and treatment plan. My doctors here have NO idea what to do, have all told me such and so here I sit and wait and wait, not knowing if I am going to die, end up on oxygen or if irreparable damage is being done. My friends do not know what to say except I am sorry. If you truly love your friends and family, tell them you are fabulous and save the medical lessons for the very very important things. If you love them, do not put them in an uncomfortable situation by giving them all of this stuff they cannot do a thing with. They cannot help. We do not have a right to make them feel helpless. We know, they are there for us if we need them. Join a support group, make some friends with chronic illness. They will love to hear all the details as they are in this war with us.
People are typically very pleasant upon seeing someone they know. The first thing out of their mouth is usually "how are you". How ARE you. How are YOU. Any way you emphasize it, this is a tricky response for a lot of us. My best friend asked me this seemingly simple question not two days ago. My reply? I am fabulous! She said "really" haha. YES really!
Here is my whack-a-doodle theory. People ask the above question but only mean it half heartedly. They really do not want the full spiel of how we are physically and mentally. I feel chronic illness confuses people and leaves them without truly knowing what to say to us. Depending on your particular illness, it can be VERY confusing. I have CVID and now have developed a lung disease known as GLILD and am waiting to go to National Jewish Hospital in Colorado for a diagnosis and treatment plan. My doctors here have NO idea what to do, have all told me such and so here I sit and wait and wait, not knowing if I am going to die, end up on oxygen or if irreparable damage is being done. My friends do not know what to say except I am sorry. If you truly love your friends and family, tell them you are fabulous and save the medical lessons for the very very important things. If you love them, do not put them in an uncomfortable situation by giving them all of this stuff they cannot do a thing with. They cannot help. We do not have a right to make them feel helpless. We know, they are there for us if we need them. Join a support group, make some friends with chronic illness. They will love to hear all the details as they are in this war with us.
Sunday, October 10, 2010
CVID & Subcutaneous Immune Globulin (SubQ)
It is quite the adjustment honestly. Its not so much the needles that is hard. It is all that PREPPING! My gawd! I am so freaking paranoid after watching the videos and working with the nurse 2 times I am almost positive I am going to get some horrid flesh eating bacteria in me from improper cleansing.
Ok sorry, crazy rant haha (sort of true though). The nurse then sends you home with your supplies: a big RED sharps container and a big box for all your needles, syringes, tape and clampy connector things. I have no idea what they are called frankly. Also a flip chart of the "best" places to poke yourself. It could just be me, but I cannot reach my own tush if you paid me a million dollars. I'm sure there is an "inch to pinch" but I can't reach it. If I was 20? Maybe. My seven year old would be happy to stick mama in the butt with a needle but I didn't offer.
First thing I did wrong when I was on my own? Forget to let it come to room temperature. LAME. So that put me back an hour. No biggie. EXCEPT I forgot by then my Emla cream had worn off. It's this nifty numbing cream you put on to help the bite of the pokes not feel so.....pokey.
Secondly, my child, had to TOUCH everything. No, not just point and ask what it was, she needed to POKE it. This produced a screech from me and then the wasting of many more packets of alcohol wipes.
All in all, I must say, it is not that bad. I have a rash now, but maybe that can be attributed to the cream? It's my 3rd subq and first rash and first time with the cream. So I'm going to blame that instead of worrying about it.
I think the funnest part is my daughter trying to film me with my crappy cell phone (God, please give me an android phone, I really really really need one, really) (Oh and did I say I really NEED one?). I was going to attach but it is NOT being cooperative. Stage fright possibly? I will also attach a picture for those of you who need a visual :) Until next time....ta ta!
K
Sunday, September 19, 2010
But You Don't Look Sick...
I have 3 diseases: A lung disease caused by CVID which is a Primary Immune Disease and now I've been diagnosed with Fibromyalgia. I wish I could learn how to shorten this into an IMPACTFUL presentation. But here it is in its entirety.
The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
Saturday, September 18, 2010
Living Hell
First off, I want to apologize (in case anyone I know is actually reading this lol). I have been a SUPER FREAK for about 3 weeks now. Why you ask? I was given ANOTHER friggen diagnosis. Fibromyalgia. I was on a horrible drug that I cannot tolerate that I am now weaning off of.
I am in complete denial. One human being CANNOT possibly live with 3 diseases, be a successful single parent, work and go to school. Well, I actually postponed school a little bit AGAIN (sniff sniff). I emailed all my doctors and demanded they put their smarty pants on and think of something else to test me for as the other 20 tests all came back negative. So did the 3 new ones my pulmo thought to test me for. Crap. So I reluctantly join a fibro support group on Daily Strength and thank God I did. As with my CVID group, they welcomed me home, shared their personal horrors, gave me advice and invisible hugs. I was also told that being diagnosed with a serious illness is like experiencing a death. Why? I was ecstatic when I was diagnosed with CVID - I had an answer! I was definitely going through the stages though, I am in the denial stage....er um STILL. Soon to be anger and isolation and hopefully acceptance.
Some of my closest friends do not even know I have this. I feel like I am burdening my friends when I speak to them about it. I know they love me and would listen. They have a life, family, jobs, children. I don't want to be a burden. I want ME back, the ME that makes them laugh when THEY call me stressed out. The ME that teaches my friends how to cook. The ME that kept my house clean and NEVER cussed in front of my child.
I don't know what is going to happen. I tried one of the meds and I turned into a psycho, literally cursed out one of my doctors. It took me 3 weeks to realize what it was. I will not try anymore as all the fibro drugs are antidepressants. I have never been able to tolerate them. I personally think, if you are not depressed or do not have a chemical imbalance they should react weirdly right? Or is that just more of my overly-logical thinking?
My biggest fear in life right now (since I probably will never post this on my facebook) is that I will have to go on disability. I love the company I work for. I have a really good job working in the office of the VP and helping some of the other leaders. My direct supervisor is amazing, like a second mom. If I have to go on disability, who am I? I feel as if I will have NO worth. What do I tell people when they ask "what do you do"? UM NOTHING? I'm 39, a single mom with multiple illnesses, who wants that in their life?
I am in complete denial. One human being CANNOT possibly live with 3 diseases, be a successful single parent, work and go to school. Well, I actually postponed school a little bit AGAIN (sniff sniff). I emailed all my doctors and demanded they put their smarty pants on and think of something else to test me for as the other 20 tests all came back negative. So did the 3 new ones my pulmo thought to test me for. Crap. So I reluctantly join a fibro support group on Daily Strength and thank God I did. As with my CVID group, they welcomed me home, shared their personal horrors, gave me advice and invisible hugs. I was also told that being diagnosed with a serious illness is like experiencing a death. Why? I was ecstatic when I was diagnosed with CVID - I had an answer! I was definitely going through the stages though, I am in the denial stage....er um STILL. Soon to be anger and isolation and hopefully acceptance.
Some of my closest friends do not even know I have this. I feel like I am burdening my friends when I speak to them about it. I know they love me and would listen. They have a life, family, jobs, children. I don't want to be a burden. I want ME back, the ME that makes them laugh when THEY call me stressed out. The ME that teaches my friends how to cook. The ME that kept my house clean and NEVER cussed in front of my child.
I don't know what is going to happen. I tried one of the meds and I turned into a psycho, literally cursed out one of my doctors. It took me 3 weeks to realize what it was. I will not try anymore as all the fibro drugs are antidepressants. I have never been able to tolerate them. I personally think, if you are not depressed or do not have a chemical imbalance they should react weirdly right? Or is that just more of my overly-logical thinking?
My biggest fear in life right now (since I probably will never post this on my facebook) is that I will have to go on disability. I love the company I work for. I have a really good job working in the office of the VP and helping some of the other leaders. My direct supervisor is amazing, like a second mom. If I have to go on disability, who am I? I feel as if I will have NO worth. What do I tell people when they ask "what do you do"? UM NOTHING? I'm 39, a single mom with multiple illnesses, who wants that in their life?
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