As some of you may know, I have a variety of health concerns, and have been going to various specialists including my Rheumatologist for almost two years, although I have been sick for almost 5 years. After having a bad week last week (Extreme nausea, headache (not my normal migraine) other stuff and having very low potassium) I’ve been draining away my personal and vacation days and have called in more times than I want to list here. So, I decided that I should try to get intermittent time off through the Family and Medical Leave Act so that, well, I won’t get fired at work or told that I can’t have a certain day off, etc. (I hate when that happens and it has happened many times to me in the past!)
Not as easy as you might think.
I was in the middle of a battle today between my Rheumatologist and Primary Care Doctor (Who is an a-hole and I want to replace, but whose office has walk-ins, late evening hours and Saturday appointments so I stay. (See above.) Rheumy wont sign it, and Primary says Rheumy should as a lot of my stuff is related. Yikes!
I made RheumyPrimary write a letter to telling him the 3,000 blood draws, X-Rays, MRI’s, Specialist Consults, Appointments w/her every 4-8 weeks, and reminded her the 4 -5 hour round trip drive to U-M to see my (FINALLY!) Rheumatologist Consult in August would leave me in the negative balance and taking time off work without pay and at risk for firing. Not to mention that she has me seeing 2 more specialists and how was I taking time off from work for further tests in Pulmonary and Sleep Study matters?
Primary spent 15 minutes listening to me and my struggles with the other 9 diseases he treats me for and I reminded him of the 2 more specialists he has referred me to … and how was I going to find the time to get full days off work for an Endoscopy, Colonoscopy, and Cystogram?
He made me write out the mega list of every symptom, call-in issue, etc. and all of it will be decided with his lawyer tomorrow. Wow, really, is this normal? Or is he the world’s most paranoid doctor? Or am I a naive fool?
Anyone else ever tried to use FMLA for intermittent health issues and run into trouble? I need to hear it if you did, please comment.
And, on a side tangent: Met a chick today who has a co-worker whose 30 and who had been diagnosed w/Rheumatoid Arthritis and just discovered she actually has Lyme Disease. We live in the midwest where it can happen. Never knew much about it … did research and had 45 of the possible 69 symptoms … if it me, or the Evil Web-MD out to trick me again? Anyone else had this or knew someone in this predicament? Would like to hear your thoughts.
10 responses so far ↓
genie28 // June 25, 2008 at 9:04 pm
Just started reading your blog; I’m another Michigander, living in the Capitol City.
By sheer coincidence, I had a convo with a friend today about intermittent use of FMLA. He had no problems, using it 3 days a week for 8 weeks after adopting his first child. He worked for a district court.
On your side topic- Lyme Disease, I recently read an article in Glamour or Cosmo or Health magazine about a woman dealing with undiagnosed Lyme disease for years. And not getting proper treatment- some kind of long term antibiotics. Wish I could recall the mag!
thegirlfromtheghetto // June 25, 2008 at 9:56 pm
Genie - Wow, good for your friend! I’m just trying to use it to make all of my appointments!
Little Miss // June 25, 2008 at 10:30 pm
My daughter, when she was employed in the corporate world, used FMLA. Usually it’s pretty simple. The company gives you a form. Why the hell does the doctor need to talk to his LAWYER? That sounds bizarre to me. Lyme Disease. Yes, have them check it out. Similar symptoms to fibromyalgia, which is similar to RA. I think. But I am not a doctor and I refuse to practice without a license. LOL. I firmly believe though that the more you educate yourself the better you can be your own best advocate. Check out Mayo Clinic online for some good reliable information. Hope that helps.
joanharvest // June 26, 2008 at 12:30 pm
I live in Lyme country. The wasband has had it twice but caught it each time right away. If you don’t catch it fast it can have severe symptoms. Have you ever been tested for it? The symptoms can be debilitating.
thegirlfromtheghetto // June 26, 2008 at 12:30 pm
Little Miss - Who knows why he wants to consult… my doctor has been busted for drunk driving, so maybe he’s scared or something to do anything anymore. I’m going to stop in today again after work, as they said it was in the “To Be Done” pile when I called at 1pm.
thegirlfromtheghetto // June 26, 2008 at 12:31 pm
Joan - not sure if they tested me for that; however I have been tested for West nile, which is common in my hood. I’ll mention it to my new doctor!
Dube // June 29, 2008 at 10:28 pm
I’d definitely mention being tested for Lyme. I’ve never had it & haven’t known anyone who has. But I’ve read lots of stories about people suffering for a long time & being misdiagnosed when they had Lyme Disease all along.
Heidi Dittman // June 30, 2008 at 2:08 pm
Can’t help you with FMLA……but I have had lyme for 52 years. When I look back at my health record….now I can see it. I originally thought I got sick in 1995. But I now know that was a huge relapse. I went to a lyme doctor for 2 years. Learned alot, then I couldn’t afford him anymore. I have an m.d. who is learning from me but he is at least stepping up to the plate. I’m from southeastern Michigan. The best lyme doctor down in the lower half of Michigan, and the only one is Dr. Michael Ledtke. He is in Saginaw Township. E-mail me if you want the telephone number and address. The doctor I have now is in Saint Clair Shores, and is Dr. Mark Paschall. E-mail me if you need some information
thegirlfromtheghetto // June 30, 2008 at 5:00 pm
Heidi - I manged to get my doctor’s stupid office manager to type it up … and it’s turned in to work. I’m going to wait and see what my U-M doctor comes up with … but I’ll mention the Lyme Disease for sure. Thanks for your info … I appreciate it very much!
Jennifer // August 10, 2008 at 3:11 pm
Since finally being diagnosed by my new family doctor (due to change in insurance) last november I found out that I had Lyme’s Disease. The last time I was bit by a tic was when I was 4 years old. I had flu like symptoms but that’s when they found a heart murmur and thought that was why I was fatigued and ill. Years later, from around 11 on I started getting strange bulls eye rashes near my belly button (where my mom remembers the tick being)!!! But my Dr. then assured me I was allergic to my belt buckle. So again untreated and unaware I had Lymes.
When I was 22 I really got sick for about 6 months I was unable to work and they thought it was Mono, though I wasn’t testing positive for it.
When my insurance finally changed to aetna when i was 25 last year, I began telling my new Dr., Dr. Phillip States, my symptoms. I was constantly tired. My days off I would sleep 48 hours straight and still be tired. I was starting to get facial numbness every once in awhile and jaw pain. I had joint pain so bad, especially in my KNEES, back, neck, and fingers. Along with a constant swollen throat that sometimes was sore and other days not, but it was always swollen.
I started getting migraines…….I had never had a migraine in my life. Even when I don’t have the migraines every so often I will get a stabbing or shooting pain usually near my temples or in the front of my brain. At work under their lights my eyes hurt from the light (and at night I felt like I could barely see when a car was passing by me). I had lately been in and out of the emergency room for heart palpitations which they kept saying was either from my anxiety or just a borderline high thyroid problem. (Which I was diagnosed with depression/anxiety a few years before for the panic attacks and body numbness and shaking I had been experiencing around the time they thought I had mono). They thought I may have had a thyroid problem just because I had been mentioning over and over about my hair loss (Normal people loose 80-100 hairs a day…I was loosing about 200 or more…but only near the crown of my head). I also fluctuate between getting no sleep to sleeping for more than 12 hours but I am always-always tired and weak.
In November I was finally diagnosed with Lyme’s Diseases after a simple blood test. I was then treated with 30 days of doxycycline but my symptoms returned a month later. So then he gave me another 30 day round of doxycycline and again almost less than a month later all the symptoms returned. Now with a rapid weight drop of 10 lbs, night sweats where I waked up soaked & so are the sheets, and what seemed to me as a really-really low immune system because I was continually getting cold sores every other week on top of a staff infection in my nose. Instead of treating me again, he wanted me to see an infectious disease specialist, Dr. Jonathan Pope of DuBois Pennsylvania, but I couldn’t get in for another 2 months.
When I went on vacation to florida, during our flight down, as the plain was descending, I had started to get a shooting-stabbing pain in my right temple, as I started grabbing the side of my head my friend thought I was just getting a migraine. Right around this time is where I also had to cut back my running. I used to run at least 3 miles almost everyday, and now I’m lucky to run 3 days a week because I will lose so much weight so fast, and the joint pain sometimes just isn’t worth it.
Then the shooting pain wasn’t only in my temple but it felt like someone was stabbing behind my left eye….then i lost my vision for about 3 minutes. (In fact, that was the same eye that in 2 months 3 different times, I got a strange bubble on the white of my eye and when I blinked it would be on the outside of my eyelid.) Also during this time when I returned work I was noticing I was having slurred speak where my tongue would forget how to form a word, confusion, and when I would go to write a number 3 I would make 3 half circles instead of 2…….I thought maybe I had brain damage from the pain from the plane ride and was scarred to death. but everyone thought I was NUTS when I told them that.
So the day after I got back from vacation was my appointment with Dr. Pope. So he thinks I don’t have Lyme’s at all just from talking to me. He wanted to test me for HIV, blood diseases, cancers, etc. because of my blood count, as well as other stupid things I already knew like my thyroid (which is either normal or borderline high) and my Iron levels which is usually always low. He also sent me to see my eye Dr. to make sure there was nothing wrong with my eye. After seeing an optometrist and an ophthalmologist both said they really didn’t see anything other than my optic nerve was a bit inflamed and that my eyesight changed already a little from last september. Dr. States, my family Dr. had also sent me to get an MRI done due to the vision loss and the migraines, but the only thing they found abnormal were the size of my sinuses.
After trying to call Dr. Pope’s office weekly then daily I heard nothing back for over a month because HE had been on vacation!!! During which (again) I had been in and out of the emergency room for severe heart palpitations and irregular beating. My family Dr. called and got my results, which said I was Anemic (I already knew I had low iron—it runs in the family) and he may want to see me for more tests. A Dr.’s office that didn’t respond to me after a month was not seeing me again! So I self referred myself to a Rheumatologist specialist center in Altoona where I saw Dr. Lori Lavelle.
Weeks later, after feeling rundown, they tested my urine–and found I have a Urinary Tract Infection. Days later after being treated for the UTI, I started getting unusual kidney pain and was sent for CT scans where they found that I had passed kidney stones but the pain in my right kidney is still there!!! Seriously I think at this point I am going nuts because one person can’t have all of these problems…….
In Altoona my blood work and X-rays were done June 26th and my follow-up appointment was July 17th. They said that I am definately Anemic, which I knew. (Hense the reason there is always blood and proteins in my urine–and always treated for a UTI when going to the ER for other reasons.) They said that with my blood work had turned up that the HLA-B27 test which is an antigen or protein marker on cells that may indicate ankylosing spondylitis came back “positive”. So they’ve given me an anti-inflammotory (diclofenac sodium) for the joint inflammation & pain and also Leucovorin Calcium for my immune system, I also have to take a Super-Complex B vitamin with Folic Acid in it as well a Prenatal Vitamin just to get enough folic acid to stop the hair loss. Even with these medicines I am still having all my symptoms. I am still tired, my heart palpitations are worse to the point I think I can’t breath, and so on.
With all of this they are also sending me to be tested for MS. My first Neurologist appointment was to be October 8th but after going over my chart they want to see me now August 14th.
As of yesterday I went to work as usual, I haven’t ate right in almost 2 weeks. I started getting dizzy and seeing spots. I sat down as I thought I was going to faint and called for a co-worker. As she came over to me my body was in tremors and my heart was going crazy, she helped me to lay down because I was complaining that my spine and my head were completely numb. My brother-in-law was called to come take me to the ER, where all that they said was wrong is that I have a UTI and I’m dehydrated (due to the color and blood and protein in my urine—AGAIN!) Also he said I needed to go see someone about depression because having anxiety problems must mean I’m depressed as well. UUUHHH, probably because no Doctor knows what is going on with me. So I feel your pain about taking days off vacation/personal time, always leaving work for Doctor appointments or trips to the ER.
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