posted
I'm new here, and still don't actually have a diagnosis...the igenex tests were sent by my doc (at my request) on Tuesday, so I'm not actually sure how long that takes to get results. But my question for all of you who have obviously been dealing with this, symptoms, unknown, wondering, being told "there's nothing wrong with you", "it's all in your head", "you need an antidepressant", "the tests are normal...again", feeling like you are just a clutz and losing your mind, pain, brain fog..etc...HOW DO YOU COPE? I'm a nurse and I know there are hundreds, thousands out there that are so much worse off than myself...I've been healthy all my life and loved my career. The last 3 years symptoms have been gradually sneaking up on me but the last year has been more than I could just write off. I've been through more testing than I can care to think of...and all of it at my request as doctors are pretty scarce here in rural alaska where I moved from Florida just over a year ago. My doc, bless his soul, will order anything I ask him to, but he doesn't have a clue as to what might be wrong. Everything has been negative. I've dealt with the pain, and all the other symptoms up to this point. Even the foot pain (which I ended up reading could be a symptom of lyme..go figure) and ended up having surgery on my foot 3 weeks ago for plantar faciitis? after months of other treatment with no improvement and I ended up to the point I couldn't even walk at all on my right foot. Just 3 days before my surgery on my right foot I my left leg gave out on me and I ended up severely twisting my left ankle and tearing ligements. I now have walking braces on both feet and am bearly able to get around on crutches. My neuro symptoms...brain fog, double vision, dsylexia symptoms, short term memory problems, trouble remembering things I have done a million times...have gotten worse over the past few months. I chalked it up to my odd shifts at work...I did day and night shifts as a house supervisor, so I stopped that. It didn't help. Then I decreased my hours...didn't help. Then after being off for four weeks with my foot (feet) problems...no stress, lots of rest, and noting that the neuro problems did not improve...I had to admit that I don't feel safe to practice as a supervisor or nurse. As a supervisor I am repsonsible for medications and mixing meds when the pharmacy is not there as well as many other important duties. Admiting that was one of the hardest things in my life, but I will NOT put someone else's life in danger. So now I am on medical leave which I can only do until November 28 at which time I will lose my insurance and have to resign unless I can find some answers. I don't have any family...parents are dead and my children are grown and in Florida and I haven't told them what is going on. No close friends...my husband is being as understanding and supportive as he can. He has not been working since we moved here, so it's been my income and insurance for us. We own a lodge/bed and breakfast on the Kasilof River here in Alaska, but that is only income for 3 months in the summer. I'm sorry to vent..but I am just looking for friends and some support out there in cyberspace. Just wondering how you cope, what were your symptoms in the beginning, how you found out your diagnosis, etc. Feel free to PM me if you don't want to write here, but if you write here, it might offer some answers for others who wonder as well...Thanks in advance...Tamera
posted
Boy, that's rough, Tamera! I'm so sorry to hear this! Especially being in Alaska, where there are VERY few Lyme patients....gotta be a lonely feeling!
Others will post here in the morning....so hang in there....I'm off to bed myself!!
I'm going to copy what you wrote and break it up so we can all read it more easily. Hope you don't mind!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Originally posted by Tamera: I'm new here, and still don't actually have a diagnosis...the igenex tests were sent by my doc (at my request) on Tuesday, so I'm not actually sure how long that takes to get results.
But my question for all of you who have obviously been dealing with this, symptoms, unknown, wondering, being told "there's nothing wrong with you",
"it's all in your head", "you need an antidepressant", "the tests are normal...again", feeling like you are just a clutz and losing your mind, pain, brain fog..etc...HOW DO YOU COPE?
I'm a nurse and I know there are hundreds, thousands out there that are so much worse off than myself...I've been healthy all my life and loved my career.
The last 3 years symptoms have been gradually sneaking up on me but the last year has been more than I could just write off.
I've been through more testing than I can care to think of...and all of it at my request as doctors are pretty scarce here in rural alaska where I moved from Florida just over a year ago.
My doc, bless his soul, will order anything I ask him to, but he doesn't have a clue as to what might be wrong. Everything has been negative.
I've dealt with the pain, and all the other symptoms up to this point. Even the foot pain (which I ended up reading could be a symptom of lyme..go figure) and ended up having surgery on my foot 3 weeks ago for plantar faciitis?
after months of other treatment with no improvement and I ended up to the point I couldn't even walk at all on my right foot.
Just 3 days before my surgery on my right foot I my left leg gave out on me and I ended up severely twisting my left ankle and tearing ligements.
I now have walking braces on both feet and am bearly able to get around on crutches. My neuro symptoms...brain fog, double vision, dsylexia symptoms,
short term memory problems, trouble remembering things I have done a million times...have gotten worse over the past few months.
I chalked it up to my odd shifts at work...I did day and night shifts as a house supervisor, so I stopped that.
It didn't help. Then I decreased my hours...didn't help. Then after being off for four weeks with my foot (feet) problems...no stress,
lots of rest, and noting that the neuro problems did not improve...I had to admit that I don't feel safe to practice as a supervisor or nurse.
As a supervisor I am repsonsible for medications and mixing meds when the pharmacy is not there as well as many other important duties.
Admiting that was one of the hardest things in my life, but I will NOT put someone else's life in danger.
So now I am on medical leave which I can only do until November 28 at which time I will lose my insurance and have to resign unless I can find some answers.
I don't have any family...parents are dead and my children are grown and in Florida and I haven't told them what is going on.
No close friends...my husband is being as understanding and supportive as he can. He has not been working since we moved here, so it's been my income and insurance for us.
We own a lodge/bed and breakfast on the Kasilof River here in Alaska, but that is only income for 3 months in the summer.
I'm sorry to vent..but I am just looking for friends and some support out there in cyberspace.
Just wondering how you cope, what were your symptoms in the beginning, how you found out your diagnosis, etc.
Feel free to PM me if you don't want to write here, but if you write here, it might offer some answers for others who wonder as well...Thanks in advance...Tamera
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I will never forget my quest for a diagnosis.
I too started with vague symptoms. Joint pain, fatigue, nausea, etc.
Had other symptoms that I thought were normal like ear ringing, dry eyes, headaches, waking up with hands asleep, etc.
I just thought I was getting old.
I almost passed out at Walmart one day. Couldn't get a good breath. Shakey.
Once this symptom came on, it didn't leave.
I have seen internists, pulmonologists, ER doctors, Cardiologists and regular family doctors.
I had more Rx's for xanax and paxil than a person could take in one year.
They almost had me convinced of Post Traumatic Stress Disorder (Katrina survivor).....almost.
I knew I was dying. I remember saying "Are you sure nothing showed up in the blood work?"
I had every test imaginable run on me including a nuclear stress test.
All normal, except for some low lymphocytes.
I googled my symptoms and found two answers.
Lupus or Lyme disease.
I knew it couldn't be lupus as I had a full Ana panel run and it was negative.
I couldn't get anyone to do a Western Blot because we don't have Lyme in La.
Horrible, horrible time.
I prayed. I remember my Mom telling me if I just had a more positive attitude, I would feel better.
Finally went to a walk in clinic (last attempt).
They did a Quest WB on me. Only test that ever showed anything positive.
Only one band too (IgM 23).
I had over 45 symptoms out of 75 for Lyme at the time.
I cried in relief when they told me I had Lyme disease.
I think I knew it, but couldn't get anyone to test me for it.
Of course I didn't know exactly what that meant, but at least I had a name for what was wrong with me.
Found this site. Was directed to a LLMD through Lymetoo (thank-you) and was
Diagnosed with Lyme, bartonella and babesia.
I remember those horrible days of knowing something was wrong with me,
But having no success in having a professional believe me.
I am a Speech Pathologist. I couldn't speak, couldn't find words, had dysphagia,
Short term Memory issues, all indicative of some type of neural problem.
Hang in there. I am glad you have a doctor who is willing to work with you.
How isolated you must feel given your symptoms and location.
Since I have been diagnosed, every one in my family has tested positive for Lyme.
I also have 7/8 neighbors who have all tested positive for Lyme also.
My Quest for a diagnosis was a blessing for all the others including my family.
They didn't have to go through what I did.
Sending you healing thoughts and prayers.
You are not alone.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
U asked how do we cope with all this? O gosh that is the hardest ? to ask us lymies!
We all cope in our own ways with this. One main one is the support we all give each other.
Because we all can relate to the lyme hell journy of doctor's, treatments and our symptoms.
1 good thing u have going for u is your doctor listening to u!
Well me, I wake up and make a bet with myself about which symptom will show up today or today going to be a good day!
I really try hard to keep my sense of humor about my life and find small things to laugh at myself for.
I take it day by day.
What part of Alaska r u living in? My son was living there for a while, until he came home,
because of me being sick with the LD
Please feel free to email at anytime, if u need a friend to talk to!
Best wishes to u!
Blazinglyme
-------------------- don't give up the fight Posts: 49 | From Frankford, DE | Registered: Sep 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I am sorry you have so much to deal with.
How I have coped is a combination of things.
- Trying to take it one day at a time. (when i was sicker it was more like maybe 10 minutes at a time)
- Hope even when things seem hopeless. Try to hold onto the belief that eventually I will get through all this.
- Have a cat who keeps me company and loves me always deapite how sick I am.
- Try to find little things I can do that I enjoy. (Like listening to cds of bands I like)
- Don't sweat the small stuff. Try to priororitize what really matters.
- I know that if I overexert myself, dont get enough sleep/rest or am under extra stress I will get sicker so I try to keep this in mind to keep myself from getting worse.
My advice for another one would be ask for help when you need it... which i KNOW is a good idea and would be beneficial but this is one thing I have yet to master
These are the major things (that I can think of right now) that have gotten me thru thus far.
I was undiagnosed for 13 years and yes many of us here was told there isnt anything wrong with us.. and blah blah blah.
I was 10 when I got sick. The best of the drs didnt help me at all. the worst of them were trying to convince my parents I was faking or it was stress. and when I was 12 I was actually told by dr that it was all my fault I was sick.
I am fortunate though because my parents always believed me (and my family still does)not everyone has the luxury of a family that believes them.
posted
I have a hard time coping for sure but when it's really bad...
I take stock. I realize I have a great LLMD, a diagnosis and a supportive boyfriend who does believe in me and my recovery.
Gratitude gets me through the worst part of this.
You said you have a husband. Sometimes it can be harder to have someone around when you are so sick, but on the other hand you do have someone who loves you that is there. Not everyone has this so even though this sucks beyond words, you do have someone there.
I have no family either. No friends here because I moved to be with my boyfriend. I have 2 cute dogs though, a boyfriend who I feel so much closer to now and am getting treatment. I am thankful for this. I count the blessings...and am grateful for the small things.
Email me anytime too.
Posts: 111 | From San Francisco | Registered: Feb 2007
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Cobweb
Unregistered
posted
I didn't necessarily cope so well-I just didn't kill myself.
I remember those dark isolating days of knowing there was something much bigger than "just getting old" going on.
Finally a connection with an LLMD and I sobbed in relief.
We faced financial hardship, still do, but you know - I think I'm going to make it even in the poor house.
Little things-like breathtaking views of Alaska nourish my soul.
It is easier to cope now-with Lymenet, an LLMD, signs of improvement, and knowing what my priorities are.
Although it's been awful at times-the joy of survival and the rewards of percevierance have all been worthwhile.
Later-I have to calm down an hysterical 18 year old who dyed her hair (again) with the same disastrous results as before.
She has the money to fix it-but she wants a hand to hold. She's hysterical crying-I'm hysterical laughing. I told her I love her no matter what her hair color or no matter how many mistakes she makes.
This too shall pass.
Take Care, Carol
ps I will try to distract her by letting her know I met someone on Lymenet from Alaska.
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Cobweb
Unregistered
posted
Wanted to let you know Hair Disaster Day ended on a better than ever note.
Hardest part was not saying "Told You So"
They stripped her hair ,then did a color correction and it didn't fall out. WHEW
And while I was waiting for her- I got a shampoo and cut. Long overdue. I love scalp massages.
I'm startled whenever I look in the mirror though.
And tomorrow I get to attend a birthing!!!!!not my daughter's,but a close friend's.
I was asked to go out on long term disability when my Lyme Disease made it too difficult to continue in an Early Childhood Education Classroom with special needs children.
In April of 2005 or was it 2006? well one of those years, I was feeling indespensible as the only Med Tech who was at work qualified to do g-tube feedings .
The next day,Tuesday, I fell (again) only this time I took down a wheelchair with me. Fortunately there was not a child in it.
Wednesday my supervisor called me into her office before work and told me my request for resonable accomodations, submitted the week before, was denied.
With the onset of seizures, cognitive dysfunction, and ataxia they felt it was no longer "safe" for me to be alone with the children,
and they couldn't guarantee double coverage.
One of the most depressing days of my life. I packed my things, cleared my desk, and left around noon. It was horrible.
By Friday of that week I went back to my supervisor to thank her for doing what I couldn't bring myself to do- Say enough is enough. I needed to go out on medical leave.
I was going to try to push myself to make it to the end of the school year in June. Even though it seemed overwhelming-which is why I put in the request for reasonable accomodations.
So I have been out on disability-I am only recently feeling strong enough to think about going back to work-after a little over one and a half years.
We have stayed afloat with financial and food donations from our church, and cutting way way back on expenses, and just plain doing without on some things.
but today I got a haircut-even though my daughter called me a traitor because she has been cutting it for me.
I told her since she could afford to go to a professional then I could too. Mine was $20.00. Hers was $120.00. She'll just have to wait a little longer for that computer she wants to buy.
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The
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She'll just have to wait a little longer for that computer she wants to buy.
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