sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
But I don't think that I can do my job
So, I need some advice and support because I just don't know what to do.
I was doing so well this summer. Made some major improvements. Then I caved under my bosses pressure and started taking on extra hours at work.
Symptoms started sneaking back in but I ignored them. Until I couldn't anymore. In Sept my doctor advised me to take a medical leave of absence.
I cried about this decision for days (it still really upsets me). My doctor was right, I needed a break but it really hurt to have to let go of that last little bit of independence and normalcy.
Then my PICC line broke and I relapsed quickly after being off Rocephin for only a few days. By the time I had my f/u in Oct I was still not back to where I started in Sept. It was a huge setback.
So, my LLMD started me on a new combo. It's been hard but i'm beginning to see windows of improvement. Earlier this month, I was too sick to leave the house. I couldn't do much of anything.
Now i'm feeling a little better. I've been able to take a short walks outside and go to the store for groceries. My stamina is incredibly poor and I crash after these simple activities. I usually have to take a nap in the afternoon though I try not to. I get overwhelmingly tired, start to shiver, all my symptoms get worse if I don't rest.
My cognition is not so great right now either. Add in the nausea, head pressure, tremors, pain, etc and the picture doesn't look so good.
My boss called me yesterday to "see how i'm doing" aka see if i'm ever coming back. She said that they will not be able to hold my position any longer. I have to return to work in December or I will lose my job and my insurance.
I'm supposed to f/u with my LLMD early next week and I want so much to be better by then. I guess i'm hoping and praying for a miracle.
[ 12-02-2009, 08:01 PM: Message edited by: sammy ]
Posts: 5237 | From here | Registered: Nov 2007
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posted
Hi Sammy...Have been thinking of you, but been in exactly the same boat as you. I think last month was bombard them month at our LD,s office.
Not up to it tonight, but promise will PM you soon. I'm not back to work either I can't see it in the near future.
Posts: 847 | From upstateNY | Registered: Dec 2007
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-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Sammy,
Just wanted to say I'm rooting for you.....you are such a support to everyone else. I hope that things work out to your benefit.
Sorry nothing more than that to offer.
Posts: 3975 | From usa | Registered: Aug 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thank you keltyl, six, joalo, and feelfit
At the end of this month I will have met the standard 12 week allowance for medical leave. That is why I must return to work by the first of December.
I'm wondering, has anyone stopped IV therapy before they were well then continued to get better on orals alone? Without relapsing?
Posts: 5237 | From here | Registered: Nov 2007
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posted
I feel for you. I'm in the same boat. My LLMD has basically told me that to get well I have to de-stress and take time from work. I told him I feel I need to do that too but I won't be able to afford to see him if I take time off and I won't have a job to come back to.
I too was pressured and have taken more and more on at work and I'm only getting worse for it. I've tried to talk to my boss but it isn't getting any better. I think I'm going to have to make a very tough choice soon myself.
Will your boss work a compromise? Can you work part time at work and part at home? Or all from home? I know how the brain fog is. Sometimes it means sitting for 10 minutes staring at something just trying to figure out what you're supposed to do next. You can do that at home or at work :-)
Maybe having the freedom to work from home would allow you to rest a little and then go back to the task at hand and maybe your boss would see the value of keeping a good employee who has just had the misfortune of becoming ill.
I'll be thinking of you and all my best. Hugs.
Posts: 237 | From WV | Registered: Mar 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Sammy,
I understand only too well! Except that I haven't had a job in ages (I work for myself, but haven't been able to do that much either).
Did you get another line put in?? Is that under discussion? If so, I encourage you to do that. I recently had my PICC line break, also, and while off abx, I went rapidly downhill.
Is your LLMD also targeting co-infections? I know Dr. B has said that if you go downhill within days off of abx, that it's Bartonella, as LD doesn't grow that fast.
It sounds like you need as much support and help as you can get about the decision about work. It's a tough one! What would happen about insurance, if you didn't go back to work. So many thorny issues! I send you best wishes to make the right decisions and to heal well and as quickly as possible.
Posts: 3770 | From around | Registered: Mar 2008
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bettyg
Unregistered
posted
sammy,
i just checked, you're a RN so you are in a pickle with your health not being good enough to return to work and INSURANCE hovering over you/many others.
praying a miracle will happen for you. hang in there my friend.
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posted
Parttime work? At least you could keep your ins. Detox with welchol, questran, chlorella?
Posts: 8430 | From Not available | Registered: Oct 2000
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Boy have I been there. I have not worked in 3 years. 5 months after I became ill and not knowing what I had, I became too disabled to work. I took 3 months of short term disability, thinking doctors would figure out what was wrong and fix it by then. Yea right!
Of course that didn't happen and I had to unfortunately resign from the greatest job in the world. I resigned on Jan 29th, 2007. I remember it well. It took me 2 years literally to get over the stress of having to quit. At the time it wasn't like a decision. I just couldn't hold down a job.
Anyway I was lucky that my hubby has a good job; but it didn't make the mental part of loosing my ability to work any easier, or the guilt. It was much harder than I could have imagined, to resign.
I have been in treatment for a year and a half now and still have not gotten back to a place where I could possibly hold down a job. I can function about 3 or 4 hours a day right now, which is an improvement; but even that much will cause me to crash.
Anyway, I guess the point I am trying to get to, is you are not alone. Many of us have been where you are. This seems to be a common misfortune for many lymies.
My idea is that if you can in any way push through and work, it is better for you mentally. If you just can't work, if its too much physically, then there is no choice and you have your answer.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thank you...
Motown, I wish I could work from home. That would make recovery easier. Allow breaks when needed. But no, I have to physically go to work to be able to do my job.
Rumigirl, I did have the PICC replaced 10days after it broke. I relapsed/crashed 4days off the Rocephin while taking oral doses of Doryx, Factive, Malarone, and Plaquenil. Scary, isn't it. My LLMD did change my treatment protocol to hopefully better address the coinfections (i'm positive for several).
Bettyg, you are right. It's hard to take care of others when you have trouble caring for yourself.
Lou, my job is supposed to be part-time but I have always been pressured, actually forced, to pick up more hours. And because of the nature of my job, I never get off as scheduled. Breaks are also cut short or missed entirely. It is expected.
And i'm trying to detox. Lots of probiotics, lots of water, lemon juice daily, NAC, and IV glutathione pushes. I also have Pekana drops but I keep forgetting to take them at the appropriate times.
Sutherngrl, thank you for understanding. I would love to push through this and be able to work again. But if the time comes and I can't do it then I guess I have my answer. I just don't want that answer!
Posts: 5237 | From here | Registered: Nov 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I just found out today that i'm supposed to enroll for benefits by friday. HR reps helped everyone else sign up at work today but they forgot about me! My boss emailed me this evening and said that she'd walk me through it over the phone.
So, please pray for me as I talk with her tomorrow. This situation (poor health, ins appeals problems, work difficulties) is so much bigger than me. I really need God's hand to guide me and provide for me. I realize that I cannot get through this alone.
Thank you all for your encouraging words. Will you please keep me in your prayers?
Posts: 5237 | From here | Registered: Nov 2007
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Sorry about your situation. I know it all too well. Work/benefits/income versus being able to physically perform a job with a disease that very few understand.
I teach and am running out of sick time and will be forced into a corner like you are very soon. My faith and hope is strong and I pray that God will touch you and all of us who struggle with his grace and power to heal. I will pray for you and all of the people here on this forum tonight that tommorrow will bring a new day of improvement and a feeling of never being alone in this difficult disease process.
Best,
Don
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
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Just saw your post. My heart goes out to you and all you are going through. I will be praying for your talk with your boss tomorrow, as well as the insurance appeals, and financial provision.
May God direct your steps and make provision in a special way.
** hugs**
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Update 11/19
I spoke with my boss today and it went surprisingly well. Since our last conversation she was able to talk with HR and admin. They are willing to work with me to help me get back on the job faster.
This is such a huge relief and answer to prayer! They want me to follow my doctor's advice whether that means a few more weeks of leave, less hours, or on the job limitations. And i'll be able to keep my insurance, which is huge blessing:)
So, now I just need to get better as my f/u is scheduled for next week. Hopefully the appt will go well and my doctor will be able to accurately gauge what I can and should not do (specifically direct or indirect patient care), my employer wants specific instructions.
As you can see, God has been working behind the scenes here. I just need to trust Him, leave it all in His hands, and try not to worry.
Thank you all so much for your continued support and prayers:) You are such a blessing to me!
Posts: 5237 | From here | Registered: Nov 2007
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posted
Such a relief to hear this. We were worried about you. Sending you a hug.
Posts: 8430 | From Not available | Registered: Oct 2000
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Update 12/2/09
I just found out that my insurance is going to cover 13days worth of Tygacil. The catch is that we don't know if they will refill the RX every 13days or if 13days is the monthly max. So I'm going to try it and pray that my insurance will continue to cover it.
Since we don't know how I'll respond to the new medication my doctor is recommending that I stay on the medical leave of absence for another month.
Will you all please pray for me again as I need to talk with my boss tomorrow. I know that i'm pushing the limits of my employer's patience and generosity. And I really don't want to lose my job.
Hopefully this new med will be the key to my recovery. That within 4wks I will be able get though the rough part and begin to see some tangible improvements.
Thanks so much
Posts: 5237 | From here | Registered: Nov 2007
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posted
I will pray for you to see God's hand in how your meeting goes tomorrow and that you will be encouraged by the meeting and your new med results.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
That's great that your talk with your boss a while back went well. And great news that your insurance will cover 13 days of Tigecycline!! (13 days??? Where in the heck did they get that number?!). Now, let's hope they continue to cover it.
I pray that all goes well, and that this helps you to turn the corner. It has for a lot of people. Just rough to go through the treatment sometimes. Keep us posted.
Posts: 3770 | From around | Registered: Mar 2008
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i know that for me to get better i need to be at home and concentrate on getting well but i also need the income.
I love my job but am at a total loss at what to do. I work for a very small company so i do not have sick time, short term disability or anything like that through my job.
What do you do in this case. I have been in treatment for a year and a half and not getting any where or not much improvment. I try to pretend and go on but i am just making myself worse.
I can not drive and have not for over 5 months, someone takes me to work (while i lay down in the car on the way), try to make it till lunch, lay down again and then if i can make it the rest of the day, i crash when i get home again.
What kind of life is this. I want to be better but also my family depends on my income. Any ideas? Desparate for sure.
Posts: 55 | From ohio | Registered: Aug 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thank you all for your kind thoughts and prayers:)
Speaking with my boss went well today. She did not seem surprised when I told her that my doctor recommended one more month of medical leave. Especially when I explained to her that I would be trying the new med.
Of course, I still have to get her the doctor's letter and she has to talk with HR and admin but hopefully everything will go well with them too.
I'm just praying that this new combo will help turn things around for me. That i'll tolerate it well, make some real improvements, and be able to go back to work in January.
Angrob, i'm sorry to hear that you are struggling with work also. It's hard. Words cannot express how it makes you feel.
So, what do you do? You do what you have to do. Keep trying, keep hoping, keep faith. Stay positive (I know it's hard). Love on your family. Look for the little things in life that make you smile (my cat is good at that, she fetches, how funny is that!).
I'm currently on a medical leave of absence (aka unpaid sick leave, accumulating debt). It was something that I never ever ever wanted to have to do. Very humbling to have to admit that I cannot do my job. It hurt. Really, it crushed me. I cried for days. But my doctor was right. It was something that I needed. I had been in denial for awhile trying my best to push through and ignore my symptoms but that only made me worse.
So here I am now. Trying to get back to where I was before. Hoping to be well again. Maybe this will be my month...
Posts: 5237 | From here | Registered: Nov 2007
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posted
Thanks Sammy....it sure does help having someone that understands. I know what i need to do, now if i can just come to grips with it.
I know that if i do have to take time off that somehow someway God will get me through....i just need to trust, i know that...sometimes it is just really hard to do that!
It sure helps that someone else knows just how that feels to give up something that you really need and want. Working is the one thing that holds me in the REAL world, so i hate to let that go.
I am so afraid that if i am here all of the time (expecially since i can not drive and have not been able to for months) that i will go crazy for sure! Thanks....keep your chin up, it sounds like things are at least looking up with your boss. Posts: 55 | From ohio | Registered: Aug 2008
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I'll keep you in my prayers. Somehow there will be provision. Could you PM me on how the new drug works. I am going to be starting the same medicine soon. Maybe it will be the one the helps you to turn the corner.
Posts: 86 | From California | Registered: Oct 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Just a thought here-I am making sure I don't have any parasites. Using the poison, may not be the
best choice, but one I was ok with. I am feeling better! This may be something to look into. I did
this because I have been lathering up on coconut oil and letting it set @30 mins. before
showering. I found while scratching my back neck, skin peeling and some kind of micro black half
moon shaped looking organism. Filaria? I don't know but I am feeling better.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
sammy, have you started the tigecycline yet, any results?
Hope things are getting somewhat better for you...Rich
Posts: 208 | From Hudson Valley, New York | Registered: Mar 2008
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Sammy,
I ended up on medical leave for two years. I kept hoping to get back, but just never made it. I went through my family leave, and then I was on medical disability.
I went back Aug 08 still feeling crummy. I did have a relapse in June of 09, but still want back to work in August 09. It's been a rough road.
My new LLMD put be on some homeopathics in addition to Isocort for my adrenals and abx. That has made all the difference. I still have off days, and take a sick day now and then. Now a good night's sleep really helps.
It gets better, but it takes a long time. I still take cat naps in my car during lunch. It's what gets me through the day.
Good luck.
Posts: 1954 | From Illinois | Registered: Aug 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thanks again for all of your support, encouragement, and prayers. I am so grateful for all of you
I guess I should give an update for those who missed my other post in General. Unfortunately, I lost my job shortly before Christmas. My employer sent a letter in the mail notifying me of my termination.
Said that they could no longer hold my position. I later found out that they hired my replacement back in October. So there was no job for me to return to anyways. Not nice.
It still hurts to think about. But I believe that God is still in control. That he will continue to provide for me somehow.
Hopefully I will get better soon so that I can get a new job. I have not been well enough to work or even update my resume. This month has been very hard.
I started the Tygecycline about 4wks ago. Taking it with Rocephin and some other orals. Most days I can barely function enough to get showered, change clothes, eat, and maybe interact with my family and pets for awhile.
My insurance will be changing next month (COBRA) so I don't know what medications will be covered. Hopefully i'll be able to continue the Tygacil. I don't think that i've been on it long enough to tell if it is working yet. I just want something to work.
I miss living. I want so desperately to be well or even close to well again.
Posts: 5237 | From here | Registered: Nov 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
CherylSue, can you please PM me your LLMD.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
sammy,
So sorry to hear this news.
Just a thought...do you rife? I am looking into that for my husband and myself to use in conjunction with abx. It might be something to help speed your recovery, although I can't yet talk from experience. Hopefully I will be able to soon! It also would be an inexpensive treatment option in the long run, after the initial investment.
Best of luck to you,
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Wow, I am so sorry to hear about your situation but I can totally relate. When I had to "take a leave of absense" from my work it was the hardest decision I ever made because I knew I wouldn't be back in a few months and I knew I was a lot sicker then I had ever been before.
Here's the good news! You were laid off in this the year of the stimulous. This means two things, unemployment for you will extend past 6 months. TAKE IT. AND Cobra benefits will be paid by your previous company at 65% for up to 15 months. This means you only have to paid 35% of the premium! Cobra is just an act which states that you get to keep the coverage you had when you lost your job. You plan will not change unless your company changes their plan. You premium can go up yearly depending on when your company signed up with your health provider and everything starts over January 1 for deductiables.
I know it might seem daunting right now. But most people don't even get cobra paid for so in a way we are REALLY lucky.
Also, I was on tigecycline but I quit after a month. That stuff is brutal. How are you maintaing on it? Do you see an improvement on it? I am hoping to go back on rocephin but waiting to see my LLMD.
Keep your head up! smiles
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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