Now that is a dirty word. When combined with a chronic debilitating illness things get even weirder.
Basically I am a very very VERY lucky person. Before I became ill I worked at a place for almost 12 years that has excellent benefits: six months of paid sick leave, they don't fire people when they get ill, they pay for everyone to have long term disability insurance. FMLA guarantees that you won't loose your job for the first three months you are out of work for either being sick yourself or having to care for someone who is ill. It does NOT guarantee pay just that your job will still be there if you get better within the three month period. After that all bets are off. Most places let you go if you are still unable to work. My place, five months later I'm still employed. I will still have a job if I have a miraculous recovery. I have been paid in full for the last four months. In the US that in itself is a miracle. Now I have to transition from FMLA protections which expired last month to the long term disability insurance which starts in a month or two. My illness has to be approved first so there is a slim chance I may not get it but that is why we have lawyers. I just found out that when on disability I get 60% of my pay which is taxable. The other great part is that the company picks up the medical, dental, vision and life insurance payments while I'm on disability. I don't have to pay for them! They also keep making payments to my 401k while I'm out sick! Holy crap! I'll keep the insurance for my family and still get a sizable paycheck. Like I said I am very VERY lucky.
Now here is where things get weird. Husband owns his own business. Since the economy took a nose dive his business has dried up. He is lucky he has the odd job here or there but that measly trickle of jobs don't even cover the rent on his shop space. Now his ego is tied up in this business. He has steadily built it up over the course of the last ten years. Until a year ago he always ran in the black. He was good at what he does and he had the business brains to run the company well. Now, through no fault of his own it is dying. He is selling off equipment to pay the bills. He is home most days now. He works on the house a lot, painting, fixing things. He isn't lazy by any means.
So here we are; we're both home and my salary is about to be cut. This is roughly the conversation that took place last night:
H: "You're Visa bill is $1800/month"
M: "That is gasoline and groceries. I don't buy anything else."
H: "Why is the grocery bill so high?"
M: " I have to eat GF food and I have to eat organic fruits and vegetables or my stomach gets upset."
H: "I can't believe we spend over a third of the monthly budget on food."
M: "Food is always the highest component of a household budget besides rent."
H; "How are you going to pay for this?"
M: dead silent, my brain isn't working since he picked the crash point of my day to have this conversation, I'm barely awake, lying on the couch only letting my eyes move around
H: "What are we going to do? My life has fallen apart."
M: (in my head) your life? what about me? I'm the one laid out on the couch unable to move. At least you can still run around, go places and work.
M: "What about getting your truck driving licence? You like driving and trucks. You could do deliveries." (I have already tried this tactic on other days with the jobs of electrician and auto mechanic. He has four good skills, sound engineer, electrician, auto mechanic and the aforementioned driving)
H: long pause "If I get my CDL and then get in any kind of car accident there are huge fines. If we didn't live near Boston that is a good idea."
Now, I've been poor before. I grew up poor. The name of the game was to work. You got a job so that you always had income. It didn't matter if you were slinging hash or bagging groceries. You worked. Now I am listening to both my husband and kid come up with a stream of excuses why they can't go out and get jobs to help with the bills. Ok. I keep my mouth shut. I don't say anything.
But around 3am when my brain switched back on again and I absorbed the conversation I just documented something clicked. What about that car he just bought? The 1950's Bel Air he is having shipped from Oregon so that he has something to do this winter? Where is the money coming from for car parts? Why is he giving me crap about eating organic when he has just paid thousands of dollars for his THIRD project car. Yes this is number three! There are two other Bel Airs taking up the garage. I no longer figure skate. I no longer buy lunch every day. I no longer travel. I haven't bought clothes in over six months. I haven't purchased shoes in over a year. I haven't even gone out to the movies since I've been sick. The only thing I do is buy good wholesome food to help me feel ok. Now I am furious! I mean really furious. I can't sleep and today I don't want to be near him in case I rip his head off.
They always say that the money arguments aren't really about money. I'm curious what this one is about. My being ill? His loosing everything? The death of his career and business? Why do I have to be punished for this? Grieving for the loss of my old self? He has lost his partner. I can no longer do things with him or for him. I am a lump on the couch. On good days I can cook a lame meal. What is going on?
Monday, September 6, 2010
Sunday, September 5, 2010
And the Other Foot Falls
Back to my old groggy self today. It was nice to be almost normal for a couple of days. The dog waking me up this morning didn't help any. At least hubby traded our antibarking device for a bigger better one. This one is automatic so I don't have to aim it at the dog, which I was very bad at. It looks like a little brown birdhouse. Hubby has wedged it near the fence to be as close to the dog as possible even though it has a range of 50'. Hubby could nail the dog with the old handheld one from our bedroom window even though it only had a range of 30'. I can hardly wait for tomorrow morning to see how effective it is. Maybe I'll finally start having some undisturbed sleep for a change. I also have an acupuncture treatment tomorrow so I also looking forward to seeing if I feel normal for a couple of days following that.
Saturday, September 4, 2010
Whoa!
I went to accupuncture for the first time in two weeks this past Thursday. I had been doing horrible at the begining of the week. Very tired. Crashed for two days that included all the joints aching. I got back from acupuncture and slept all afternoon. Then I went to bed at 2am and slept really deeply. Much deeper than I normally do. I woke up Friday refreshed. I even tidied up a little which was the first time in weeks. Today after only 8 hours of sleep instead of the normal 10 I not only got up early but I just finished cleaning the kitchen counters, dry mopping the kichen floor, swifering away the cobwebs and doing a few dishes. WTF? What happened? Where did all this energy come from? I am amazed. I am shocked. Hope I didn't do to much. I don't want to crash again. But what a nice surprise. Days like this give me hope.
Friday, September 3, 2010
Good Intentions
"The world's just not as sparkly as you want it to be. We should all carry some glitter and add a little bit along the way." -Sleep Talkin' Man
Even if I am housebound and don't believe that happy thoughts will cure me, I do believe that I can make the world a better place in small ways.
I just found this awesome website: Nerdfighters They are a group of Nerds that work to "decrease the suck and increase the awesome" in the world. What a great idea! Oddly enough I came to this website because of another chronically ill chick, Esther Earl. She recently lost her fight with cancer and a story was done about her on NPR. Apparently she was housebound due to her fight but that didn't mean she couldn't do good. She was very active on line and as a result affected many lives. There is a wonderful tribute to her on nerdfighters. I now want to spread the news about nerdfighters in hopes that other nerds out there like me want to decrease the suck and increase the awesome. We CAN do good even if we are housebound!!
Even if I am housebound and don't believe that happy thoughts will cure me, I do believe that I can make the world a better place in small ways.
I just found this awesome website: Nerdfighters They are a group of Nerds that work to "decrease the suck and increase the awesome" in the world. What a great idea! Oddly enough I came to this website because of another chronically ill chick, Esther Earl. She recently lost her fight with cancer and a story was done about her on NPR. Apparently she was housebound due to her fight but that didn't mean she couldn't do good. She was very active on line and as a result affected many lives. There is a wonderful tribute to her on nerdfighters. I now want to spread the news about nerdfighters in hopes that other nerds out there like me want to decrease the suck and increase the awesome. We CAN do good even if we are housebound!!
Thursday, September 2, 2010
A Simpler Explaination
Just found this post at Phoenix Rising. It is a great explaination of the two studies that have just been published that found MLV viruses in 80% of CFS patients. For the entire article with comments and links to other papers click here.
MLV related viruses - a simpler explanation
by Bob
on August 30th, 2010 at 07:36 PM
11 Comments
I've already posted a blog about MLV-related viruses but I thought it might be quite difficult to follow for some people who can't follow the science easily... So I've now written this shortened, simpler, version, which hopefully might be easier to grasp. (feedback welcome.)
MLV = Mouse Leukaemia virus
MLV's are mouse retroviruses that cause cancer in certain mice.
Judy Mikovits and Harvey Alter have discovered a variety of MLV-related viruses in ME/CFS patients.
These MLV-related viruses are not MLV's (mouse viruses) but they are closely related to them.
The only difference between Alter's viruses and Mikovits' viruses are that they are related to slightly different types of MLV's.
Judy Mikovits' viruses are related to Xenotropic MLV's, and so they are 'Xenotropic MLV-related viruses'.
Whereas Alter's viruses are related to Polytropic MLV's and so they are 'Polytropic MLV-related viruses'.
So the only difference between them is the use of the terms 'Xenotropic' and 'Polytropic'.
The terms 'Xenotropic' and 'Polytropic' indicate a slightly different behaviour of a virus.
XMRV = 'Xenotropic MLV-related virus':
X = Xenotropic
M = MLV (Murine Leukaemia Virus)
R = Related
V = Virus
Alter's viruses are 'Polytropic MLV-related viruses', and so he could have named them 'PMRV' (instead of XMRV). He hasn't named them PMRV, yet. Instead, he refers to them as Polytropic MLV-related viruses, or just MLV-related viruses.
All of the viruses found so far in the two papers, are MLV-related viruses, and they are Human Gamma Retroviruses (HGRV's), which is an umbrella term.
'Xenotropic' means that a virus cannot infect, or replicate in, its original host species (i.e. mice), but it can jump to another species (i.e. humans) where it can become a whole, complete, replicating virus.
'Polytropic' means that a virus can infect both its original host species (i.e. mice) and it can jump to another species (i.e. humans).
The difference in the meaning of the two terms is why the new viruses that Alter has detected cannot be called XMRV. Alter's viruses are related to Polytropic MLV's, not Xenotropic MLV's.
It remains to be seen how all of these new viruses, or variants, will be labelled and categorised.
XMRV's (more than one variant of XMRV has now been detected by Judy Mikovits) are clearly a subset of a larger group of viruses (MLV-related viruses and Human Gamma Retroviruses).
We might end up with a new collective name for all of these MLV-related viruses.
Are Alter's viruses and Mikovits' viruses different variants of the same virus, or are they totally different viruses?
Obviously there are differences, but the similarities seem to be more significant than the differences.
Alter says that these differences are exactly what he expects to see in a retrovirus, so these observed virus mutations support the type of human retrovirus infection that Mikovits' XMRV research indicated.
Alter says that the Hep C and HIV viruses exhibit the same pattern of variants as this new type of human retrovirus that Alter and Mikovits have found in ME/CFS patients.
Indications from Alter are that all these viruses might be referred to as variants of a single disease associated virus, just the same as the multiple Hep C virus variants are often referred to as the Hep C virus (singular).
Of course, it might turn out that these retroviruses are also associated with other diseases, such as Fibromyalgia, Gulf War Syndrome, MS, Autism.
MLV related viruses - a simpler explanation
by Bob
on August 30th, 2010 at 07:36 PM
11 Comments
I've already posted a blog about MLV-related viruses but I thought it might be quite difficult to follow for some people who can't follow the science easily... So I've now written this shortened, simpler, version, which hopefully might be easier to grasp. (feedback welcome.)
MLV = Mouse Leukaemia virus
MLV's are mouse retroviruses that cause cancer in certain mice.
Judy Mikovits and Harvey Alter have discovered a variety of MLV-related viruses in ME/CFS patients.
These MLV-related viruses are not MLV's (mouse viruses) but they are closely related to them.
The only difference between Alter's viruses and Mikovits' viruses are that they are related to slightly different types of MLV's.
Judy Mikovits' viruses are related to Xenotropic MLV's, and so they are 'Xenotropic MLV-related viruses'.
Whereas Alter's viruses are related to Polytropic MLV's and so they are 'Polytropic MLV-related viruses'.
So the only difference between them is the use of the terms 'Xenotropic' and 'Polytropic'.
The terms 'Xenotropic' and 'Polytropic' indicate a slightly different behaviour of a virus.
XMRV = 'Xenotropic MLV-related virus':
X = Xenotropic
M = MLV (Murine Leukaemia Virus)
R = Related
V = Virus
Alter's viruses are 'Polytropic MLV-related viruses', and so he could have named them 'PMRV' (instead of XMRV). He hasn't named them PMRV, yet. Instead, he refers to them as Polytropic MLV-related viruses, or just MLV-related viruses.
All of the viruses found so far in the two papers, are MLV-related viruses, and they are Human Gamma Retroviruses (HGRV's), which is an umbrella term.
'Xenotropic' means that a virus cannot infect, or replicate in, its original host species (i.e. mice), but it can jump to another species (i.e. humans) where it can become a whole, complete, replicating virus.
'Polytropic' means that a virus can infect both its original host species (i.e. mice) and it can jump to another species (i.e. humans).
The difference in the meaning of the two terms is why the new viruses that Alter has detected cannot be called XMRV. Alter's viruses are related to Polytropic MLV's, not Xenotropic MLV's.
It remains to be seen how all of these new viruses, or variants, will be labelled and categorised.
XMRV's (more than one variant of XMRV has now been detected by Judy Mikovits) are clearly a subset of a larger group of viruses (MLV-related viruses and Human Gamma Retroviruses).
We might end up with a new collective name for all of these MLV-related viruses.
Are Alter's viruses and Mikovits' viruses different variants of the same virus, or are they totally different viruses?
Obviously there are differences, but the similarities seem to be more significant than the differences.
Alter says that these differences are exactly what he expects to see in a retrovirus, so these observed virus mutations support the type of human retrovirus infection that Mikovits' XMRV research indicated.
Alter says that the Hep C and HIV viruses exhibit the same pattern of variants as this new type of human retrovirus that Alter and Mikovits have found in ME/CFS patients.
Indications from Alter are that all these viruses might be referred to as variants of a single disease associated virus, just the same as the multiple Hep C virus variants are often referred to as the Hep C virus (singular).
Of course, it might turn out that these retroviruses are also associated with other diseases, such as Fibromyalgia, Gulf War Syndrome, MS, Autism.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is:
CFS? Right now I have the diagnosis of mono but my primary says my symptoms don't match up so I'm heading to another specialist in a couple of weeks.
2. I was diagnosed with it in the year:
2010 hopefully
3. But I had symptoms since:
May 2010, I'm new to this
4. The biggest adjustment I’ve had to make is:
Not being able to do ANYTHING
5. Most people assume:
If I just _____ I'll get better.
6. The hardest part about mornings are:
Finding a reason to get out of bed.
7. My favorite medical TV show is:
House
8. A gadget I couldn’t live without is:
Computer with an internet connection: it is my link to the outside world
9. The hardest part about nights are:
I like nights. I usually feel pretty normal after my late afternoon/early evening rest session. The house is quiet and I can putter around or watch what I want on TV without having to worry about others.
10. Each day I take __ pills & vitamins. (No comments, please)
No meds. I tried taking a fist full of vitamins for several weeks but when they didn't do anything I stopped.
11. Regarding alternative treatments I:
Am currently using chiropractic and acupuncture. I am considering naturopathy and osteopathy.
12. If I had to choose between an invisible illness or visible I would choose:
Visible. The last time I had a protracted invisible illness my supervisor at an old job (not my present one) gave me crap for only working part time when another guy came in even though he was having chemo treatments at the time. I haven't let my current supervisor know what I have. I have been working through HR to keep a lid on it.
13. Regarding working and career:
I have been out of work for four months now. I have been replaced by others on all programs I used to work on. I have lost my office so that if I ever go back I will have to unpack a stack of moving boxes. I'll be lucky if I have a computer desk and a bookcase. I have probably killed my career dead even if I make it back to work. When people get really ill there no one wants to work with you since you are now "unreliable".
14. People would be surprised to know:
I was in the middle of my first ever figure skating competitive season when I got ill. I won a bronze and a silver medal and had one more competition to go. I was planning on skating with my mom in the adult week ice show in Lake Placid this summer.
15. The hardest thing to accept about my new reality has been:
Boredom. I'm 80% housebound and spend most of the day laying down. What the heck can I do with my time when I can't do anything?
16. Something I never thought I could do with my illness that I did was:
Learn to relax properly.
17. The commercials about my illness:
Since there is no cure for CFS there are no pills to advertise yet.
18. Something I really miss doing since I was diagnosed is:
Skating
19. It was really hard to have to give up:
Eating desserts. Since I am not exercising at all I am gaining weight even though I am eating way less food and have an ultra healthy diet. My body needs exercise to maintain its weight and I just can't do it.
20. A new hobby I have taken up since my diagnosis is:
Blogging in multiple blogs
21. If I could have one day of feeling normal again I would:
Drive to Lake Placid and skate with my mom and sister.
22. My illness has taught me:
Patience and how to say no
23. Want to know a secret? One thing people say that gets under my skin is:
Have you tried ____? It should fix _____.
24. But I love it when people:
Tell me they miss me.
25. My favorite motto, scripture, quote that gets me through tough times is:
"Barn's burned now, now I can see the moon." -Masahide
26. When someone is diagnosed I’d like to tell them:
There are two new studies out showing a link between CFS and viruses. Maybe they might just figure this out and we'll have some antiviral drug protocols within a few years.
27. Something that has surprised me about living with an illness is:
How cranky my husband gets. How great my kid is.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Sent me a Tibetan Healing Bell CD which he recorded. It helps me sleep.
29. I’m involved with Invisible Illness Week because:
I'm an advocate at heart and we need to make ourselves visible even if we are housebound.
30. The fact that you read this list makes me feel:
Proud. Maybe this blogging thing will get the word out and help others.
CFS? Right now I have the diagnosis of mono but my primary says my symptoms don't match up so I'm heading to another specialist in a couple of weeks.
2. I was diagnosed with it in the year:
2010 hopefully
3. But I had symptoms since:
May 2010, I'm new to this
4. The biggest adjustment I’ve had to make is:
Not being able to do ANYTHING
5. Most people assume:
If I just _____ I'll get better.
6. The hardest part about mornings are:
Finding a reason to get out of bed.
7. My favorite medical TV show is:
House
8. A gadget I couldn’t live without is:
Computer with an internet connection: it is my link to the outside world
9. The hardest part about nights are:
I like nights. I usually feel pretty normal after my late afternoon/early evening rest session. The house is quiet and I can putter around or watch what I want on TV without having to worry about others.
10. Each day I take __ pills & vitamins. (No comments, please)
No meds. I tried taking a fist full of vitamins for several weeks but when they didn't do anything I stopped.
11. Regarding alternative treatments I:
Am currently using chiropractic and acupuncture. I am considering naturopathy and osteopathy.
12. If I had to choose between an invisible illness or visible I would choose:
Visible. The last time I had a protracted invisible illness my supervisor at an old job (not my present one) gave me crap for only working part time when another guy came in even though he was having chemo treatments at the time. I haven't let my current supervisor know what I have. I have been working through HR to keep a lid on it.
13. Regarding working and career:
I have been out of work for four months now. I have been replaced by others on all programs I used to work on. I have lost my office so that if I ever go back I will have to unpack a stack of moving boxes. I'll be lucky if I have a computer desk and a bookcase. I have probably killed my career dead even if I make it back to work. When people get really ill there no one wants to work with you since you are now "unreliable".
14. People would be surprised to know:
I was in the middle of my first ever figure skating competitive season when I got ill. I won a bronze and a silver medal and had one more competition to go. I was planning on skating with my mom in the adult week ice show in Lake Placid this summer.
15. The hardest thing to accept about my new reality has been:
Boredom. I'm 80% housebound and spend most of the day laying down. What the heck can I do with my time when I can't do anything?
16. Something I never thought I could do with my illness that I did was:
Learn to relax properly.
17. The commercials about my illness:
Since there is no cure for CFS there are no pills to advertise yet.
18. Something I really miss doing since I was diagnosed is:
Skating
19. It was really hard to have to give up:
Eating desserts. Since I am not exercising at all I am gaining weight even though I am eating way less food and have an ultra healthy diet. My body needs exercise to maintain its weight and I just can't do it.
20. A new hobby I have taken up since my diagnosis is:
Blogging in multiple blogs
21. If I could have one day of feeling normal again I would:
Drive to Lake Placid and skate with my mom and sister.
22. My illness has taught me:
Patience and how to say no
23. Want to know a secret? One thing people say that gets under my skin is:
Have you tried ____? It should fix _____.
24. But I love it when people:
Tell me they miss me.
25. My favorite motto, scripture, quote that gets me through tough times is:
"Barn's burned now, now I can see the moon." -Masahide
26. When someone is diagnosed I’d like to tell them:
There are two new studies out showing a link between CFS and viruses. Maybe they might just figure this out and we'll have some antiviral drug protocols within a few years.
27. Something that has surprised me about living with an illness is:
How cranky my husband gets. How great my kid is.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Sent me a Tibetan Healing Bell CD which he recorded. It helps me sleep.
29. I’m involved with Invisible Illness Week because:
I'm an advocate at heart and we need to make ourselves visible even if we are housebound.
30. The fact that you read this list makes me feel:
Proud. Maybe this blogging thing will get the word out and help others.
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