I feel horrible today. It started 2 days ago....the herx from the change in meds. I feel like I have the flu......times 10. Everything aches, pressure in my head, dizzy; all I want to do is lie down. It's after 3PM and I am just really getting up for the day. My back feels like I went 10 rounds in a boxing ring.
I look at myself in the mirror and I see the age and the illness today. On days like this I can't go out, and I would never let anyone come over. Would anyone let people come over when they felt like they had the flu?
These are they days when I feel like it's hopeless and I feel like God has abandoned people who are sick like me with this disease; cast us off like lepers, left to figure it out on our own.
I saw Ben Stiller on Letterman the other night. He has Lyme Disease, and actually he doesn't look so good. Older. Sadly, in the Lyme World when a celebrity or famous person is diagnosed with Lyme, it's almost a celebration. Maybe THIS time the medical establishment will listen.
Monday, March 29, 2010
Friday, March 19, 2010
Sell It On Ebay
Times are getting tougher here. I definitely thought I would be back to work by now, but sadly it isn't so. If we thought things were rough last year financially, this year gives "rough" a whole new meaning.
I started to sell my photography equipment on Ebay. I have no choice. It's been sitting unused, which isn't good for the electronics. I am now completely positive that my energy level will never be high enough to allow me to use a full studio of equipment again. So it's for sale on Ebay.
Last week we sold a lighting system and a backdrop and stands. This week we sold a reflector system and I have another backdrop and stand set for sale. My husband has packaged everything up as the payments come through on Paypal. Systematically, every few days I have dropped off box after box filled with my past life at the UPS shipping center and watched it slide across the metal table and be put on the stack of other outgoing boxes. Boxes with pieces of my life to be shipped off to some stranger far away, who will never know what these items meant to me and my life.....and how the loss of them represents the bigger loss Lyme Disease has brought to my life.
I guess it's time to say goodbye. It saddens me, however. What I used to be able to do in a day, now takes a week sometimes. I have reached a level of acceptance although I have fought it tooth and nail. I think half the battle with any disease is accepting the hand you have been dealt without ever giving up. I am trying.
But now the important thing is putting some money from these ebay sales in our bank account and paying bills. At least I feel I am doing my share that way, by cashing in on my equipment.
After selling the rest of my equipment I am not sure what I could sell. My jewelry, furniture? Certainly no one would want my blood.
I started to sell my photography equipment on Ebay. I have no choice. It's been sitting unused, which isn't good for the electronics. I am now completely positive that my energy level will never be high enough to allow me to use a full studio of equipment again. So it's for sale on Ebay.
Last week we sold a lighting system and a backdrop and stands. This week we sold a reflector system and I have another backdrop and stand set for sale. My husband has packaged everything up as the payments come through on Paypal. Systematically, every few days I have dropped off box after box filled with my past life at the UPS shipping center and watched it slide across the metal table and be put on the stack of other outgoing boxes. Boxes with pieces of my life to be shipped off to some stranger far away, who will never know what these items meant to me and my life.....and how the loss of them represents the bigger loss Lyme Disease has brought to my life.
I guess it's time to say goodbye. It saddens me, however. What I used to be able to do in a day, now takes a week sometimes. I have reached a level of acceptance although I have fought it tooth and nail. I think half the battle with any disease is accepting the hand you have been dealt without ever giving up. I am trying.
But now the important thing is putting some money from these ebay sales in our bank account and paying bills. At least I feel I am doing my share that way, by cashing in on my equipment.
After selling the rest of my equipment I am not sure what I could sell. My jewelry, furniture? Certainly no one would want my blood.
Sunday, March 14, 2010
The New Protocol
Last Tuesday's LLMD visit proved interesting. I knew it was coming. I suffer with this Cranial Nerve Pain and Migraine headache situation continually. The PA told me it can no longer be danced around and has to be addressed head on. Head on to me speaks clearly of excruiating pain as the bacteria is killed off and the neurotoxins flare. She is talking 5 months of double intracellular antibiotic treatment. In the almost 3 years of this nightmare, I have come to know that 5 months really means more like 8.
My new Protocol includes:
Factive 5 days on/off
Minocycline 50 mg every other day
Valium as needed
Vicobrofen (a pain killer) as neeeded
Xanax as needed
Nystain
Diflucan
My usual slew of vitamins, supplements and probiotics I take each day.
So this reads to me like a long time in the hole. I am adjusting my mindset, knowing that it won't be pleasant but probably necessary to dig out whatever form of Lyme bacteria has colonized in my left cranial nerve. My worst fear is that if left untreated it will take my sight.
I pray that after 3 years of blasting my body and organs with antibiotics it will be able to go this round. I hope this is the last round but sadly based on what I know, this is going to be a life long battle for me. I still see my final days confined to a wheel chair, racked with pain.
And so it goes. The nightmare of Lyme Disease. Spring is coming and so are the ticks. It saddens me to know that we still don't know anymore about this disease than we did 3 years ago, and that more and more people will be bitten this spring, summer and fall. More children will be forced out of school, more people will be unable to work, more people will lose all they worked for to a disease that our nation refuses to understand. It's under these circumstances, for the third year, I gather my bravery, my hope faith, and desire to be well and face this new, challenging treatment.
Wish me luck.
My new Protocol includes:
Factive 5 days on/off
Minocycline 50 mg every other day
Valium as needed
Vicobrofen (a pain killer) as neeeded
Xanax as needed
Nystain
Diflucan
My usual slew of vitamins, supplements and probiotics I take each day.
So this reads to me like a long time in the hole. I am adjusting my mindset, knowing that it won't be pleasant but probably necessary to dig out whatever form of Lyme bacteria has colonized in my left cranial nerve. My worst fear is that if left untreated it will take my sight.
I pray that after 3 years of blasting my body and organs with antibiotics it will be able to go this round. I hope this is the last round but sadly based on what I know, this is going to be a life long battle for me. I still see my final days confined to a wheel chair, racked with pain.
And so it goes. The nightmare of Lyme Disease. Spring is coming and so are the ticks. It saddens me to know that we still don't know anymore about this disease than we did 3 years ago, and that more and more people will be bitten this spring, summer and fall. More children will be forced out of school, more people will be unable to work, more people will lose all they worked for to a disease that our nation refuses to understand. It's under these circumstances, for the third year, I gather my bravery, my hope faith, and desire to be well and face this new, challenging treatment.
Wish me luck.
Friday, March 5, 2010
Cranial Nerve Pain, The Icepick And The Headache
It usually starts as a flutter in my left temple. Then I can feel the endings of my left Cranial Nerve start to expand, and along with that comes the steady feeling of increased pain. Then there is the icepick. Like a deliberate walloping blow to my left temple, but the icepick isn't removed. It's as though it's stuck. Pain starts to move around to the front of my forehead like someone has my head in a vice. I feel nerve pain and nerve sensations start to move down my neck and across the left side of my face. There is dizziness and light sensitivity.
I am completely debilitated until this disease decides to remove the icepick. It can take one day, or it can take 5. I can't think about anything else, I am rendered useless.
I generally start to load my self up with 3 Advil and 1 Tylenol as soon as I feel the flutter. This is a headache that won't, and in 2 and a half years has never gone away on its' own. I have to lay down. If after 2 rounds of the Advil/Tylenol combo, it hasn't started to subside, I take a Maxalt. Maxalt is a Migraine remedy that works effectively but it is a benzo and will take me off the map for at least a day. Sometimes I have to take 2 rounds of Maxalt, 4 hours apart. If that happens I am totally flattened.
When I was first diagnosed with Lyme and co infections my overall symptom list included about 35 different symptoms. Fortunately, over time ever so slowly it has dwindled down to about 8, but the one which currently plagues me the most is the Cranial Nerve pain and headaches which I describe.
This is excruciating pain, that can sometimes go on for days. It is exhausting and unrelenting once it starts.
What causes it? My LLMD says its the flare of the neurotoxin from the Lyme bacteria (in this case mainly Bartonella) as they fight back when antibiotics attack them. I believe it to be true, because these episodes are certainly worse, when an antibiotic rotation is first started.
This pain recedes as an ocean wave recedes. Pulling back over the course of another 18 hours or so. It generally happens by me sleeping them off. There is residual tenderness in my left temple and forehead that will take another 2 days to go away. I feel that the worst is over, but then there is always a chance I will feel the flutter in my temple again, at any time and the cycle will start all over again.
I am completely debilitated until this disease decides to remove the icepick. It can take one day, or it can take 5. I can't think about anything else, I am rendered useless.
I generally start to load my self up with 3 Advil and 1 Tylenol as soon as I feel the flutter. This is a headache that won't, and in 2 and a half years has never gone away on its' own. I have to lay down. If after 2 rounds of the Advil/Tylenol combo, it hasn't started to subside, I take a Maxalt. Maxalt is a Migraine remedy that works effectively but it is a benzo and will take me off the map for at least a day. Sometimes I have to take 2 rounds of Maxalt, 4 hours apart. If that happens I am totally flattened.
When I was first diagnosed with Lyme and co infections my overall symptom list included about 35 different symptoms. Fortunately, over time ever so slowly it has dwindled down to about 8, but the one which currently plagues me the most is the Cranial Nerve pain and headaches which I describe.
This is excruciating pain, that can sometimes go on for days. It is exhausting and unrelenting once it starts.
What causes it? My LLMD says its the flare of the neurotoxin from the Lyme bacteria (in this case mainly Bartonella) as they fight back when antibiotics attack them. I believe it to be true, because these episodes are certainly worse, when an antibiotic rotation is first started.
This pain recedes as an ocean wave recedes. Pulling back over the course of another 18 hours or so. It generally happens by me sleeping them off. There is residual tenderness in my left temple and forehead that will take another 2 days to go away. I feel that the worst is over, but then there is always a chance I will feel the flutter in my temple again, at any time and the cycle will start all over again.
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