A couple weeks ago I received three envelopes in my mailbox from a collection agency. This fact itself was not shocking as invoices of mine have been sent to medical collections several times since I became ill. The shock came when I realized they were for Dr. appointments I'd had before I even became ill and while pregnant with my daughter. Due to my low income at the time, I'd qualified for Medi-Cal which is medical coverage that's subsidised by the state of California. Many low income women in California qualify for this program (which incidentally, ends one month after your child is born). It's a great program but, like so many others, has it's definite flaws. The invoices totaled over three thousand dollars for services that took place in 2009, almost exactly three years ago.
At first I thought, "how can they be demanding money for something that occurred so long ago"? I did some research and found that there is a statute of limitations on the collection of medical bills. It varies from state to state but typically falls into the three to four year range. California has a four year statute of limitations on the collection of medical bills. When I discovered this, I felt beaten for sure. I dusted off my pre- Fibromyalgia/ME/CFS medical files which are in with the rest of my life's paperwork. When I became ill I had to start storing all of my medical records that delt with these new illnesses in their own box since they took up about as much space as all of the other paperwork combined. Though I'm normally pretty good about filing important documents, I'd apparently cleaned out my files from my pregnancy because I couldn't find the invoices in question. So silly of me to think that since the invoices had been paid three years ago, it was a done deal. Lesson learned...don't throw away invoices even if they've been paid in full and the accounts have supposedly been closed.
My story does have a happy ending through, I think. I collected all of the information I had and made appointments with the advocate I'd worked with during my pregnancy and a representative from the billing department. I also contacted my bank, Medi-Cal and the billing service my doctor's office uses and asked for copies of records to be sent. I finally convinced the billing department to drop the case - I think. The last time I spoke with someone there, I was told they had recommended the invoices be "written off". I haven't heard anything but I wouldn't be the least bit surprised if next month I get the same invoices from the collection agency. It seems nothing ever gets done correctly the first time. That's been my experience anyway.
This is the story of my very frustrating journey through the debilitating and mind-boggling world of Fibromyalgia, ME/CFS, Autoimmune Disease, Depression and more.
Showing posts with label uninsured. Show all posts
Showing posts with label uninsured. Show all posts
Sunday, September 9, 2012
Sunday, May 20, 2012
Uninsured With ME/CFS and/or Fibromyalgia - Part 3 - Prescription Medications
What to Do When You're Diagnosed With ME/CFS and/or FMS and Don't Have Health Insurance
So, you've seen the doctor, had some blood work done and depending on the results, may have gotten a prescription to address your pain, fatigue or other symptoms. Many prescriptions for ME/CFS and Fibromyalgia are new and really expensive. This also means that there aren't generic alternatives. One doctor I saw prescribed Cymbalta which has a three-hundred-fifty dollar per month price tag! Incidentally, this particular doctor (a Rheumatologist) had almost no experience dealing with low income and/or uninsured patients as well as countless other faults. I filled only half of the prescription and charged it on my credit card.
The clinic my GP (who I really like) practices at, has a person on staff who helps uninsured, low-income patients obtain prescription medications at discounted rates or for free, depending on the situation. When I first started seeing this patient advocate few years ago, it all seemed like magic. My doctor wrote the prescription and had it forwarded to the advocate. I made an appointment to see her, she explained which financial papers I needed to provide, she'd fill out some forms and I'd sign them. In about two weeks, I'd go back, she'd hand me a bag of name-brand prescription bottles, I'd thank her and walk out the door without paying a dime. Later I started catching on to what she was doing. The best part is, anyone can do it!
The advocate was simply contacting the pharmaceutical companies and applying for financial assistance on my behalf. I thought, I'm pretty smart, I can do this myself. It ended up being easier than I ever imagined.
When I first learned about the high cost of Cymbalta, I started to panic, thinking I'd never be able to afford it. Then I looked back in my records at the forms my advocate had filled out. I tried to mimic what she had done.
The pharmaceutical company that manufactures Cymbalta is Lilly, the same company that makes Prozac. I went to the Lilly website, searched around a bit and finally found a financial assistance form to download. I can't remember exactly which financial documents they required, but I believe I sent a copy of my previous years tax return and a month's worth of my husband's pay stubs. I put the application and accompanying documentation in the mail and prepared myself for the usual routine, complete with countless follow-up calls and re-submissions of my application. To my overwhelming shock, the situation I'd come to expect, never materialized.
About two weeks after I submitted my application, I took out the copies of what I'd sent, took a deep breath and dialed the customer service number, poised for battle. A friendly man answered the phone and asked what he could do for me. I explained that I was calling to check on the status of a financial aid form I had submitted. After obtaining my name, he quickly pulled up my file. I had expected the usual "I'm sorry, our computers are really slow today" line, but no excuse was needed. He cheerfully reported that my application had been approved and the medication was already on its way to my doctor's office. I thanked him profusely, and hung up the phone in utter disbelief. His claims were not fiction as I picked up the four bottles of Cymbalta during my next doctor's visit. My doctor, apparently not used to dealing with uninsured patients, did not handle the whole situation well at all and I never saw her again after that. But that's beside the point.
What I'm about to write is also beside the point but has to be said. I found it interesting, to put it mildly, that the pharmaceutical company was so willing to mail me drugs with a value of approximately $350. It says volumes about how over-priced these drugs must be in the first place and how huge the profits are. You wouldn't, for example, walk into a grocery store, show them a copy of your tax return and get $350 worth of groceries. But, I suppose I shouldn't look a gift horse in the mouth (if you'll excuse the cliche) so I won't continue with this particular tirade
The point is, that it is possible to get prescription drugs at a discount. Most drug companies will give just about anyone (with a prescription from your doctor of course) a free one month trial. You can usually print the coupon out on your computer and give it to your pharmacist with your prescription.
In the next post, I'll tell you about third party drug distributors that offer huge discounts. Yes, it's legal and based in the USA.
Saturday, May 12, 2012
Unisured With ME/CFS and/or Fibrmyalgia - Part 2 - Bloodwork
What to Do When You're Diagnosed With ME/CFS and/or FMS and Don't Have Health Insurance
So, now you've seen the doctor and if you've found one who takes you seriously, he or she will probably have ordered a lot of expensive blood work in order to check for autoimmune diseases such as Lupus, Multiple Sclerosis, Sjogrens Syndrome and Rheumatoid Arthritis. I'm still paying for blood work I had done over a year ago. If you don't have insurance, you could find yourself receiving a bill from the lab for $2,000 or more. I got some much needed advice regarding these invoices from a very unlikely source.
After receiving the invoice for this very expensive blood work, I called Quest Diagnostics to set up a payment plan since there was no way I'd be paying the entire amount up front. The customer service rep. I spoke with was truly a caring person and spent a lot of time with me. If you've had any experience with similar situations, you know how incredibly rare this is. She set up a payment plan for me then asked what my household income was. I thought this was an unusual question but I answered it anyway. She proceeded to tell me about Quest's financial aid program. She said she would mail me the application form and I thanked her profusely for her help. Sure enough, I received the application form in the mail a few days later, filled it out, attached the requested financial documents and mailed it out.
The next invoice I received from Quest Diagnostics had a credit applied that equaled about half of the original amount due. I was shocked and wished I'd remembered the name of the woman who was so helpful the first time I called. This whole experience taught me an invaluable lesson that I would like to pass on to everyone else who's in a similar situation.
The lesson is, to always ask if there's financial aid available no matter how unlikely it may seem at the time. The worst they can say is "no".
The next post will cover prescription medications and ways to get them at a discounted rate or for free!
(Btw - this is post #95 - five more to go till 100 and 20% off everything at Catalina Inspired on Etsy. Look for the coupon code in post # 100)
Sunday, May 6, 2012
What to Do When You're Diagnosed With ME/CFS and/or FMS and Don't Have Health Insurance
I was talking to a friend yesterday about the hardships of being chronically ill, uninsured and living on a very low income. I was giving her some advice about getting her medications at a reduced rate and thought it would make a great subject for a blog series. I've learned so much in the last two years, being uninsured, suffering with ME/CFS and Fibromyalgia and having to take a long, unpaid leave from my job.
I haven't had health insurance for a long time - about ten years I think, which was the last time I had an employer who offered it. When I was laid-off from my job, doing books for a software development company in NYC, I wasn't able to afford Cobra since I only received one month of severance pay and health insurance. After that that I had lower paying temp jobs that didn't offer health insurance at all. I didn't earn enough to pay $200 per month for insurance and believe me, I looked everywhere for something I could afford. I simply didn't make enough to pay rent ($900), utilities ($100), car payment ($300), food, gas, etc and health insurance on top of all that. You may be wondering why I'm going into all this personal detail about my finances. I know there are many people out there under the delusion that health insurance is available to anyone who works. I hope my story will open some eyes to the hardships many US citizens endure simply because they become ill.
When I lost my job in NYC, I was twenty-five years old and healthy. The occasional visit to the doctor and some anti-biotics to treat a sinus infection, for example, was expensive but doable. I recently turned thirty-nine and I spent about six thousand dollars in 2011 on Dr. visits, blood work and prescription medications and a large sum the year before as well. This is far from doable for me.
There are exactly four people (including myself) who work at the very small hotel I manage. The owners do not offer health insurance because it would take a huge bite out of their profits, making the business not worth having. Large companies can get group discounts on health insurance for their employees, but this is simply not realistic for small businesses. Two other small business owners I've worked for apologetically reported the same findings.
As my mysterious illness progressed during the last two years, I was forced to take a medical leave from my job which made paying for my mounting medical expenses increasingly difficult. I'd set up payment plans for most of my bills, but it was becoming difficult to even pay those amounts each month. I did learn some really valuable lessons along the way though, about reducing many of my medical expenses.
If your income is low enough, you can usually qualify for many different programs. Unfortunately, if you're a person who has a mid-to-low-range income (a single person who makes less than around $25,000 per year, more if your married and have children), you can get caught in "no man's land" where you don't qualify for assistance but your income isn't high enough to pay cash for your medical expenses or for private health insurance each month. I would guess that a very large percentage of people in the USA fall into this category. But I won't get on my political soap box because that isn't what this post is all about.
Your battle plan should start even before you walk through the door of your doctor's office. When you make an appointment, ask the person on the phone if their practice offers a sliding scale or other financial aid for uninsured, low income patients. Even if you're not sure whether or not you fall into the "low-income" category, fill out the forms anyway. You may qualify for something. I've found that doctor's office staff seldom offer this information so you have to ask! My doctor, for example, offers a twenty-percent discount if you pay your bill on the day of your visit. This brings the total, for me, to less than $100 per visit. Even if I don't have the full amount that day, I put it on a credit card and pay when my bill is due. Try to avoid paying in cash as it's harder to prove how much you've paid towards medical bills. You may need hard proof of these expenses in the form of bank or credit card statements in the future.
I should warn that some practices do not treat people without health insurance. This came as a huge shock to me the first time I encountered it. I was desperate to see a doctor I'd read really good things about and offered to pay the full amount in cash before even seeing the doctor, but I was turned down. I'm still a bit confused as to the motivation for this policy.
My doctors office also offers "Charity Care", a program based on income level that provides discounted or free services. I'll emphasise that you have to talk to an administrative person about this, not the doctor. Doctors, I've found, are frequently unaware that these programs even exist.
In my next post, I'll write about how to get discounted or free prescription medications and more.
Also - This is my 93rd post - 7 more till my 100th, where I'll post the coupon code for 20% off your entire order at Catalina Inspired on Etsy.
Saturday, April 9, 2011
The Light at the End of the Tunnel......Maybe?
After lots of searching and asking around, I finally found a rhumatologist who would graciously see a "cash patient". I made an appointment for the end of the month. No one at the office seems able to tell me how much this consultation will cost so I'll just have to cross my fingers that it won't wipe me out completely. I've taken some money out of a retirement savings account I have and I hope it will be enough.
This experience has reminded me of one thing, what it feels like to be discriminated against. I've been discriminated based on my income level before. I grew up in a middle to low income family and have always dated/ married men who were from as poor or poorer families than mine. As an artist and non-conformist, I have never sought a job that paid big bucks. I was always content with having enough money to pay the bills and a little left over. My current job pays practically nothing. My main compensation is my housing. I get paid commission on the rooms I book but in the winter that can be almost nothing. Since I make so little and don't have health insurance, I'm enrolled in Charity Care and Patient Assistance at the clinic. These programs only cover certain things, so for the rest I'm on my own. There is definitely a stigma attached to those who have no other choice but to participate in these programs. I have experienced it many times.
This experience has reminded me of one thing, what it feels like to be discriminated against. I've been discriminated based on my income level before. I grew up in a middle to low income family and have always dated/ married men who were from as poor or poorer families than mine. As an artist and non-conformist, I have never sought a job that paid big bucks. I was always content with having enough money to pay the bills and a little left over. My current job pays practically nothing. My main compensation is my housing. I get paid commission on the rooms I book but in the winter that can be almost nothing. Since I make so little and don't have health insurance, I'm enrolled in Charity Care and Patient Assistance at the clinic. These programs only cover certain things, so for the rest I'm on my own. There is definitely a stigma attached to those who have no other choice but to participate in these programs. I have experienced it many times.
Wednesday, April 6, 2011
Stunned ....Hopeless
I'm still feeling the same - horrible. I've patiently waited weeks for my doctor (a GP) to call specialists for consultations on my condition. Although I appreciate her intention, to treat me without my having to actually see a specialist, she obviously doesn't have the time to devote to the task. If you've read any of my previous posts you already know how many unanswered messages and even notes I've left for my doctor and how many days it takes her to "get back to me". Because I have no insurance or money for that matter, I've had to sit by and suffer for months.
I was talking to a friend recently who strongly urged me to see a Rheumatologist regardless of cost. She suggested that I might have to charge it on a credit card or get a loan to find out what was really wrong with me...if I even had Fibromyalgia. Just the thought angered me, but maybe it was the only way. I knew the name of the doctor my doctor had been consulting with and I looked him up on the net and found his office number. I called and asked to make an appointment. The woman I spoke with on the phone asked if I had a referral from my doctor. I explained that the referral I had wasn't for insurance purposes but rather a "word of mouth" referral. She asked if I had insurance and when I said I didn't, she dismissed me and said that the doctor didn't accept "cash" patients. Thoroughly confused, I asked for clarification. "We don't accept patients who don't have insurance" she stated coldly. I didn't know what to say. I couldn't believe that the doctor wouldn't see me because I didn't have insurance. Wasn't that discrimination? I hung up the phone in disbelief and I cried. I felt completely helpless and hopeless. Seeing the specialist had been my last hope and now that hope was gone. What if no doctor would see me?
I was talking to a friend recently who strongly urged me to see a Rheumatologist regardless of cost. She suggested that I might have to charge it on a credit card or get a loan to find out what was really wrong with me...if I even had Fibromyalgia. Just the thought angered me, but maybe it was the only way. I knew the name of the doctor my doctor had been consulting with and I looked him up on the net and found his office number. I called and asked to make an appointment. The woman I spoke with on the phone asked if I had a referral from my doctor. I explained that the referral I had wasn't for insurance purposes but rather a "word of mouth" referral. She asked if I had insurance and when I said I didn't, she dismissed me and said that the doctor didn't accept "cash" patients. Thoroughly confused, I asked for clarification. "We don't accept patients who don't have insurance" she stated coldly. I didn't know what to say. I couldn't believe that the doctor wouldn't see me because I didn't have insurance. Wasn't that discrimination? I hung up the phone in disbelief and I cried. I felt completely helpless and hopeless. Seeing the specialist had been my last hope and now that hope was gone. What if no doctor would see me?
Sunday, March 20, 2011
Frustration Mounts...
Tuesday was my much anticipated doctor appointment. The visit was anticlimactic to say the least. I shouldn't have been surprised, I wasn't actually. I expected nothing and that's almost what I ended up with. When I finally got to see the doctor (after sitting in the exam room for close to an hour and while my very cranky one year old tried to open every drawer in the room) she apologized for not having returned my calls. She explained that the rhumatologist she consults with had been "out of the office" for the last two weeks and promised she would call him as soon as he were back in the office. I told her I had been feeling worse and worse and asked if she could prescribe one of those fancy new drugs made specially to treat fibromyalgia. I was so desperate for some relief. In the past we'd ruled these drugs out due to their prohibitive cost, but I didn't care anymore, I had to do something. If I had to, I'd cash in my 401K. She agreed and prescribed the new drug Savella. She promised she would call as soon as she spoke to the rhumatologist and that she would fax the prescription to the pharmacy.
A couple of hours later I walked to the pharmacy to pick up the prescription. After checking with the Pharmacist, the cashier told me that they hadn't received anything from the clinic for me. I sighed deeply and walked out the door while dialing the clinic on my cell phone. My doctor wasn't available, of course, so the receptionist said she would leave a "call back". I waited all day and even called again but never received a call. The next morning I started calling again. The receptionist at the clinic was shocked of course that the doctor hadn't called me back and swore she'd given her the message. She was with a patient but the receptionist promised to "grab" her as soon as she was finished. Later in the day someone finally got her to fax the prescription. When I called the pharmacy they said they had received the prescription but that they didn't have Savella in stock. They'd ordered it and would have it the next day.
The next day I called the pharmacy and they said the prescription would be ready around noon. I picked it up at one, then my husband and I took our daughter on the glass-bottomed boat to see the fish which she absolutely loves. My husband held her, carried her and pushed the stroller since I wasn't able to. Afterwards, my husband saw a sign at a restaurants advertising a corn beef sandwich lunch special. Since it was St. Patrick's Day, he decided he had to have one. While he was eating I started reading the literature that came with the prescription. About halfway through the first page, bold and in all caps it read "DO NOT take this medication if you are also taking an SSRI". Shit! I'm taking 200mg of Zoloft per day which is an SSRI.
After lunch we went back to the pharmacist and asked him about the conflicting drug interaction. His opinion was that I shouldn't do anything until talking to my doctor. Holy shit! Was I an unwitting subject on some sick version of Candid Camera or something? Could this really be happening or was it just another of those fibro induced nightmares I live through every night?
We went back home and I got on the phone yet again. I begged the receptionist at the clinic to please have my doctor call me right away. The staff at the clinic must have thought I'd lost my mind or something. After all, how could so many things possibly go wrong day after day? They again promised they would tell the doctor that she needed to call me and I thanked them for being patient with me and reiterated that I knew none of them was to blame. I waited all day again and received no response.
At this point I was so beaten down that I just cried. Of course this made my fibro flare up even more. My husband was so angry he was ready to kill someone. I felt completely ignored and insignificant. Was I just going to have to live like this for the rest of my life; like a cripple? I waited another night, trying to be as patient as possible. The next morning I called the clinic and demanded to speak to my doctor. "I have to speak to her today...period." I hated being a bitch but this was clearly out of control. I was really suffering and my own doctor wouldn't even return my calls. Finally, about an hour later she called. "What's going on?" she asked seeming at first surprised at my desperation. I told her about the drug interactions and she seemed confused. She said she would have to research it and call me right back. She did actually call back in about 20 minutes and told me not to take the Savella. Since I had been doing so much research on the web, I suggested that I switch to a tricyclic antidepressant that had been shown to be more effective with fibro patients and that I would also be able to take the Savella at the same time. She agreed but didn't know how slowly to titrate me off the Zoloft so she would check with her psychiatrist friend and call me back.
Who knows when and if she will call back. Basically I'm no further ahead than I was before the doctor appointment. I seem to be building an immunity or something to the drugs I am on because I'm feeling worse and my sleep disturbances are returning. Last night I had nightmares about crushed baby skulls and many other terrifying scenarios. I also spent most of the night awake on and off. I slept on the couch so as to not disturb my husband.
A couple of hours later I walked to the pharmacy to pick up the prescription. After checking with the Pharmacist, the cashier told me that they hadn't received anything from the clinic for me. I sighed deeply and walked out the door while dialing the clinic on my cell phone. My doctor wasn't available, of course, so the receptionist said she would leave a "call back". I waited all day and even called again but never received a call. The next morning I started calling again. The receptionist at the clinic was shocked of course that the doctor hadn't called me back and swore she'd given her the message. She was with a patient but the receptionist promised to "grab" her as soon as she was finished. Later in the day someone finally got her to fax the prescription. When I called the pharmacy they said they had received the prescription but that they didn't have Savella in stock. They'd ordered it and would have it the next day.
The next day I called the pharmacy and they said the prescription would be ready around noon. I picked it up at one, then my husband and I took our daughter on the glass-bottomed boat to see the fish which she absolutely loves. My husband held her, carried her and pushed the stroller since I wasn't able to. Afterwards, my husband saw a sign at a restaurants advertising a corn beef sandwich lunch special. Since it was St. Patrick's Day, he decided he had to have one. While he was eating I started reading the literature that came with the prescription. About halfway through the first page, bold and in all caps it read "DO NOT take this medication if you are also taking an SSRI". Shit! I'm taking 200mg of Zoloft per day which is an SSRI.
After lunch we went back to the pharmacist and asked him about the conflicting drug interaction. His opinion was that I shouldn't do anything until talking to my doctor. Holy shit! Was I an unwitting subject on some sick version of Candid Camera or something? Could this really be happening or was it just another of those fibro induced nightmares I live through every night?
We went back home and I got on the phone yet again. I begged the receptionist at the clinic to please have my doctor call me right away. The staff at the clinic must have thought I'd lost my mind or something. After all, how could so many things possibly go wrong day after day? They again promised they would tell the doctor that she needed to call me and I thanked them for being patient with me and reiterated that I knew none of them was to blame. I waited all day again and received no response.
At this point I was so beaten down that I just cried. Of course this made my fibro flare up even more. My husband was so angry he was ready to kill someone. I felt completely ignored and insignificant. Was I just going to have to live like this for the rest of my life; like a cripple? I waited another night, trying to be as patient as possible. The next morning I called the clinic and demanded to speak to my doctor. "I have to speak to her today...period." I hated being a bitch but this was clearly out of control. I was really suffering and my own doctor wouldn't even return my calls. Finally, about an hour later she called. "What's going on?" she asked seeming at first surprised at my desperation. I told her about the drug interactions and she seemed confused. She said she would have to research it and call me right back. She did actually call back in about 20 minutes and told me not to take the Savella. Since I had been doing so much research on the web, I suggested that I switch to a tricyclic antidepressant that had been shown to be more effective with fibro patients and that I would also be able to take the Savella at the same time. She agreed but didn't know how slowly to titrate me off the Zoloft so she would check with her psychiatrist friend and call me back.
Who knows when and if she will call back. Basically I'm no further ahead than I was before the doctor appointment. I seem to be building an immunity or something to the drugs I am on because I'm feeling worse and my sleep disturbances are returning. Last night I had nightmares about crushed baby skulls and many other terrifying scenarios. I also spent most of the night awake on and off. I slept on the couch so as to not disturb my husband.
Sunday, March 6, 2011
Next Stop... Tijuana
My husband's mother has been stabilized and discharged from the hospital. She's staying with one of her sons until she's well enough to go home, so my husband has spent several days on the mainland with her. My mother has been visiting and was able to help me care for my daughter as well as help with housework while my husband was gone. I realized suddenly that if my husband were ever gone for an extended period of time, I wouldn't be able to care for our daughter alone in my current condition. After my mom left yesterday I started seriously thinking about having to move closer to my family. I thought with profound sadness that I may have to leave this island that I love so much and move back to NJ, a place I do not love, even though I was born and raised there. This notion filled my heart with such sadness that I cried. I don't know how I would mentally survive such a move back to the Gotham City gloom that is New Jersey.
I have an appointment with my doctor next week. If she gives me the same run-around, I'm moving on to plan B. I've found a treatment center in Tijuana that specializes in fibromyalgia, chronic fatigue, etc. I cannot afford treatment in the US anymore. I had started researching treatment in other countries through the somewhat new field of "Medical Tourism" when I discovered the treatment center in Mexico. I've emailed them for more information.
I have an appointment with my doctor next week. If she gives me the same run-around, I'm moving on to plan B. I've found a treatment center in Tijuana that specializes in fibromyalgia, chronic fatigue, etc. I cannot afford treatment in the US anymore. I had started researching treatment in other countries through the somewhat new field of "Medical Tourism" when I discovered the treatment center in Mexico. I've emailed them for more information.
Monday, February 28, 2011
Things in Life Go on and on
My mom is visiting from NJ for our daughter's first birthday which is tomorrow. Two friends of mine had planned to come yesterday to celebrate but one friend was sick and the other (who gets very seasick and is practically phobic of boats) was afraid of the predicted rough boat ride across the channel. I was really hurt at first, thinking she (the former) was making excuses when my she called to say she wouldn't be coming, in fact we got into a big argument about it. I don't have many friends on the island anymore and my family is on the other side of the country. My husbands family couldn't attend due to work schedules. So it would just be me, my mom and my husband. We ordered a six inch cake, mostly as a photo prop more than anything else.
Yesterday afternoon, after my husband returned from his fishing charter, he very unemotionally explained that his mother had been taken to the hospital with shortness of breath, and that he was going to take the next boat to the mainland. We've known for some time that she was ill but doctors hadn't quite pinned it down yet as a lung malignancy, CHF or COPD. We were hoping some tests she recently had would give some answers. My husband's father died when he was eighteen. I'm glad his two half brothers are there with him. He called not too long ago with sad news. Apparently his mom has several serious chronic conditions that are inoperable, including emphysema, COPD and a leak in one of her heart valves. I guess the doctor told them that she didn't have much time and that she was too weak to survive any type of heart surgery. I wish I could be there with him. He's taking it really hard and I just want to comfort him.
My husband's mother along with his half brother and his wife were just here visiting us two weeks ago. I didn't really notice anything different about his mom but my husband and his brother thought she seemed short of breath and noticed that she had lost a lot of weight (which she could not afford to loose). I'm so glad now that she was here to see her grand-daughter and spend time with her. I had no idea at the time, that it may be the last time my daughter would ever see her grandma and probably the last time my mother-in-law would come to Catalina Island, a place she has loved dearly since her teen years. When they left and we hugged, I didn't know it may have been the last time.
My husband is coming home tomorrow morning but probably leaving again the next day. He fears his mom may only live a few days more. I feel so selfish wanting my husband to be here for our daughter's first birthday but it's important to me for some reason especially since he wasn't there at her birth. I know he should be with his mom though. There will be lots more birthday's with our daughter (I certainly hope) but this may be the last chance he has to spend with his mom. I know he's coming home for me. Maybe I should call and tell him not to come home, that he should stay with his mom. I'm so torn, I don't know what to do. If he doesn't come, it'll only be me, my mom and my daughter, pretty much a non-event for her very first birthday and pathetic pictures for the family album, but really not the most important thing. I'm so confused and sad. I wish I could hug my husband right now. The events of this day have seemed to magnify the the inevitabilities of life and death. The beginning of one life and the ending of another.
Yesterday afternoon, after my husband returned from his fishing charter, he very unemotionally explained that his mother had been taken to the hospital with shortness of breath, and that he was going to take the next boat to the mainland. We've known for some time that she was ill but doctors hadn't quite pinned it down yet as a lung malignancy, CHF or COPD. We were hoping some tests she recently had would give some answers. My husband's father died when he was eighteen. I'm glad his two half brothers are there with him. He called not too long ago with sad news. Apparently his mom has several serious chronic conditions that are inoperable, including emphysema, COPD and a leak in one of her heart valves. I guess the doctor told them that she didn't have much time and that she was too weak to survive any type of heart surgery. I wish I could be there with him. He's taking it really hard and I just want to comfort him.
My husband's mother along with his half brother and his wife were just here visiting us two weeks ago. I didn't really notice anything different about his mom but my husband and his brother thought she seemed short of breath and noticed that she had lost a lot of weight (which she could not afford to loose). I'm so glad now that she was here to see her grand-daughter and spend time with her. I had no idea at the time, that it may be the last time my daughter would ever see her grandma and probably the last time my mother-in-law would come to Catalina Island, a place she has loved dearly since her teen years. When they left and we hugged, I didn't know it may have been the last time.
My husband is coming home tomorrow morning but probably leaving again the next day. He fears his mom may only live a few days more. I feel so selfish wanting my husband to be here for our daughter's first birthday but it's important to me for some reason especially since he wasn't there at her birth. I know he should be with his mom though. There will be lots more birthday's with our daughter (I certainly hope) but this may be the last chance he has to spend with his mom. I know he's coming home for me. Maybe I should call and tell him not to come home, that he should stay with his mom. I'm so torn, I don't know what to do. If he doesn't come, it'll only be me, my mom and my daughter, pretty much a non-event for her very first birthday and pathetic pictures for the family album, but really not the most important thing. I'm so confused and sad. I wish I could hug my husband right now. The events of this day have seemed to magnify the the inevitabilities of life and death. The beginning of one life and the ending of another.
Thursday, February 24, 2011
One Year Later
In four days my daughter will be one year old. In some ways it's been the shortest year of my life but in some ways it's been the longest. Time spent in pain and sickness goes very slowly. It will also be the unofficial one year anniversary of the intrusion of Fibromyalgia into my life. I think I was symptomatic during my pregnancy too but my doctor just kept writing my intense fatigue off as "a pregnancy thing".
Speaking about my doctor, she has yet to respond to my calls and note. It's been about three weeks now. I made an appointment with her for my daughters one year check-up on March first so she'll have no choice but to talk to me then. My doctor is really a very compassionate dedicated person as well as a skilled physician but working in a small island clinic can be overwhelming for even the best doctor. I think there are only three doctors in the clinic and they are expected to be on-call in the ER on alternating weeks. I guess I'll give her a pass this time.
In the meantime I'm doing ok. As I type this, the joints in my hands are throbbing with a dull pain. I did a really easy Yoga routine this morning. I think it helped a bit. The stretching felt good if nothing else. The fatigue seems to be a tiny bit better this week. Maybe my new healthier diet has something to do with it but it could be a coincidence.
I watched the film Sicko by Michael Moore a few days ago. Wow. I knew about many of the issues covered (regarding the heath care system in the US) but I was still shocked to see how so many lives had been ruined or even had ended due to the criminal system we have which puts money before the health of the citizens of our country. Anyway, I'll get off my soap box for now because I could go on and on. The film got me thinking, it showed actual health care facilities in other countries (France, Canada, Cuba, etc) and spoke with their doctors and patients. The care the patients were receiving was much better than I've ever gotten. In some cases the doctor even visited his patients at home after a procedure. An inhaler canister a US patient in the film paid $120 for (2 per month) was the equivalent of $.05 in Cuba. I was shocked! Why do we allow this exploitation!?? I don't understand (oops stepped up on the soapbox again for a minute - sorry).
I have a friend who just returned from Colombia where she had several very complicated oral surgeries that were going to cost over $100,000 in the US. The final cost for the Colombian procedure, her housing while she was there (two weeks) and airfare together cost only 1/4 the amount it would have cost in the US. Not to mention she was very happy with the work that was done and kept remarking about the kindness of the people there. You can actually hire a sort of "travel agent" to set up procedures for you in other countries including arranging flights, transportation while you're there and housing. The total cost is much less than it would cost in the US and many times the care is better.
If my doctor keeps giving me the run-around, I'm seriously thinking about going to another country to get treated. I'm going to research it for sure.
Speaking about my doctor, she has yet to respond to my calls and note. It's been about three weeks now. I made an appointment with her for my daughters one year check-up on March first so she'll have no choice but to talk to me then. My doctor is really a very compassionate dedicated person as well as a skilled physician but working in a small island clinic can be overwhelming for even the best doctor. I think there are only three doctors in the clinic and they are expected to be on-call in the ER on alternating weeks. I guess I'll give her a pass this time.
In the meantime I'm doing ok. As I type this, the joints in my hands are throbbing with a dull pain. I did a really easy Yoga routine this morning. I think it helped a bit. The stretching felt good if nothing else. The fatigue seems to be a tiny bit better this week. Maybe my new healthier diet has something to do with it but it could be a coincidence.
I watched the film Sicko by Michael Moore a few days ago. Wow. I knew about many of the issues covered (regarding the heath care system in the US) but I was still shocked to see how so many lives had been ruined or even had ended due to the criminal system we have which puts money before the health of the citizens of our country. Anyway, I'll get off my soap box for now because I could go on and on. The film got me thinking, it showed actual health care facilities in other countries (France, Canada, Cuba, etc) and spoke with their doctors and patients. The care the patients were receiving was much better than I've ever gotten. In some cases the doctor even visited his patients at home after a procedure. An inhaler canister a US patient in the film paid $120 for (2 per month) was the equivalent of $.05 in Cuba. I was shocked! Why do we allow this exploitation!?? I don't understand (oops stepped up on the soapbox again for a minute - sorry).
I have a friend who just returned from Colombia where she had several very complicated oral surgeries that were going to cost over $100,000 in the US. The final cost for the Colombian procedure, her housing while she was there (two weeks) and airfare together cost only 1/4 the amount it would have cost in the US. Not to mention she was very happy with the work that was done and kept remarking about the kindness of the people there. You can actually hire a sort of "travel agent" to set up procedures for you in other countries including arranging flights, transportation while you're there and housing. The total cost is much less than it would cost in the US and many times the care is better.
If my doctor keeps giving me the run-around, I'm seriously thinking about going to another country to get treated. I'm going to research it for sure.
Thursday, February 3, 2011
Still Waiting...
Yesterday I summoned all the energy I had, got my daughter ready and carried the stroller and her down two flights of stairs to get out to the sidewalk in front of where we live. On days when I feel "good" this is what I have to do to check the mail or go to the market. When I get to the sidewalk I have to walk to the market and post office or anywhere else in town I want to go. Many people on the island own a golf cart to get around but we don't have one. There's a fifteen year wait to get an actual car on the island.
So anyway, I gathered up some of the articles I mentioned in one of my last posts and put them in an envelope. I typed a short note to my doctor and my daughter and I walked to the clinic. Well, I walked, she sat. I dropped the envelope off at the front desk and then we had to walk back. By the time we were walking back I was feeling horrible. I was sweating profusely, I felt short of breath and my legs were weak. When we finally got home I nearly passed out. Something I used to do with such ease and speed is now like going on an expedition. I used to run up and down the stairs to my apartment not thinking twice about just running out for something I forgot at the market then running back, my respiration only slightly faster than it was before. Now I can leave the apartment only once a day if I'm lucky. There are many days I wouldn't be able to even walk down the stairs never mind walk anywhere. There are many days I never leave my apartment.
I still haven't heard anything from my doctor. I left two messages and of course the documents. Maybe it's just taking time for her to digest them. And so I wait another week.
So anyway, I gathered up some of the articles I mentioned in one of my last posts and put them in an envelope. I typed a short note to my doctor and my daughter and I walked to the clinic. Well, I walked, she sat. I dropped the envelope off at the front desk and then we had to walk back. By the time we were walking back I was feeling horrible. I was sweating profusely, I felt short of breath and my legs were weak. When we finally got home I nearly passed out. Something I used to do with such ease and speed is now like going on an expedition. I used to run up and down the stairs to my apartment not thinking twice about just running out for something I forgot at the market then running back, my respiration only slightly faster than it was before. Now I can leave the apartment only once a day if I'm lucky. There are many days I wouldn't be able to even walk down the stairs never mind walk anywhere. There are many days I never leave my apartment.
I still haven't heard anything from my doctor. I left two messages and of course the documents. Maybe it's just taking time for her to digest them. And so I wait another week.
Wednesday, February 2, 2011
Freaked Out
I had told myself that I wasn't going to talk about the mycoplasma issue anymore. It was really starting to make me crazy. I can see how conspiracy theorists get so consumed. It's really disturbing to think that there are people out there who would allow so many people to live in misery just to keep their secret. It really gives me a sad feeling.
Anyway, I'm still waiting to hear back from my Dr. This is how we poor uninsured people get medical treatment. You just have to wait until they have time for you. Meanwhile I feel like crap. Maybe I'll call the clinic again today and see if I can get some answers. She'll probably just up the meds I'm already on. I'm going to ask her though if she's ever heard anything about the mycoplasma controversy.
In the meantime we're having a big NE wind storm here today. The boats out in the harbor are rockin' n rollin'. It's forecast to get much worse. Up to 30kt gusts! I'm so glad I'm not living on a boat out there anymore.
Anyway, I'm still waiting to hear back from my Dr. This is how we poor uninsured people get medical treatment. You just have to wait until they have time for you. Meanwhile I feel like crap. Maybe I'll call the clinic again today and see if I can get some answers. She'll probably just up the meds I'm already on. I'm going to ask her though if she's ever heard anything about the mycoplasma controversy.
In the meantime we're having a big NE wind storm here today. The boats out in the harbor are rockin' n rollin'. It's forecast to get much worse. Up to 30kt gusts! I'm so glad I'm not living on a boat out there anymore.
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