My Dr.'s Appt Yesterday

So my appt with the Pain Management Dr went about as well as I expected. Frustrating & leaving in tears as usual. My family doc is a resident & will be leaving this summer {which I am super bummed about} so he wanted this Dr to take over my pain meds. His response to that? Oh I don’t do that here, there will be a new resident that takes over his cases. WTF? You are PAIN MANAGEMENT HELLO!!!! AND the last time I saw my fam doc I REALLY REALLY REALLY X's 10 needed a med adjustment and he wanted the PAIN DR to adjust/change it since HE IS THE EXPERT IN THAT FIELD! My family doc has been trying for 2yrs to get my meds adjusted so I can have a little more of an active life. I mean I CANT leave my house for more than 2hrs without becoming absolutely Miserable! Oh just pop another pill...IF it is time to sure BUT NOOOOOO that doesn’t work...I HAVE to lay down! And IF I just took a pill before I left I have another 2-3hrs Before I can take another. On top of that my Neuro only wanted me to do ONE more injection but the Pain Dr wants to do 3. Fine whatever do what ya wanna do BUT don’t leave me suffering even longer. I requested an adjustment in meds way back in Feb and it hasn’t happened yet and its getting to the point where my body has gotten so used to my dosage it doesn’t work as well any more. So what does that mean for me? It means that at times my pain gets so bad that I get sick to my stomach. Im on a med called Zofran its a nausea med that is prescribed to cancer patients undergoing chemo among other disorders. Its NOT working.

Summer is right around the corner and the kids will be out of school soon. Everyone is talking about going to the park, camping, the zoo, the beach, boat rides, ect and all I can think is that must be nice. If things continue the way they are now I will be spending 95% of my time on my couch atop my mountain of pillows unable to go out to the pond to watch the kids swim for more than an hour, a hour and half if they are lucky. After that wrestling season will start again and I DONT want to be in the bathroom puking my guts out in between matches.

What I would give to be my old self again and that isn’t even pain free just a tolerable live a “normal” life”pain. WORK. Now that would be wonderful. Unfortunately, that seems to be out of reach anytime in the near future and of course that is the ONE thing I want more than ANYTHING. Yes, I know, I sound pessimistic. I DONT know if the injections WILL work. Yes, there is the possibility that they WILL. But I have gotten my hopes up before. The first round of injections, the physical therapy, the surgery. Each time I have gotten excited that THIS will work, gotten my hopes up and been disappointed each and every time. Nothing seems to work. The pain management doctor wants to call it an ANGRY nerve when my Nuero and the Dr that did the EMG said that I have Permanent Nerve DAMAGE!

The story doesn’t end there though. I wish it did. Back in August 2010 I had my 4^th and last injection (until now) on my lower back. At the pre-op appt I had told him about my neck and how my arm had really been bothering me. He told me we would worry about that later. Later never came because at my post-op 2wks later I brought it up again and AGAIN I got the same response! We will worry about that later. Now it is almost 2yrs later and LATER has not yet come for him to worry about it. Granted my MAJOR problem IS my lower back and my left leg BUT my arm has gradually gotten worse and I am REALLY beginning to worry about it getting as bad as my leg. My Neuro wanted a round of injections done for my neck...a full set of 3. But AGAIN we will worry about that LATER. I had another MRI done of my neck on Monday and he wouldn’t even give me the results. I'm so fed up with this Dr and cant really find another because it is best to have all my Dr's at UTMC.

I go see my family doc next Friday and I cant WAIT to tell him about how much I hate going to see this

doctor. Once again I am playing the waiting game. I really thought I was on the path to get the Spinal Stimulator Implant done that could very well change my life for the better and again I have to wait even LONGER! I guess that is the story of my life. Waiting and waiting and waiting. Lets try this first and then do that. Oh no lets try THIS now and then do that. Well I’m sorry but I think we should try this too. All the while nothing works and I am really not any better than I was after my first round of injections back I May 2010. They didn’t decrease my pain but they did make me walk again. That’s all the progress I have made in 2yrs. Don’t get me wrong being able to walk again was a HUGE relief. But at the same time my pain is just as much of a burden.

I think they keep forgetting I am ONLY 30 and have been dealing with this since I was 28. I have 2 young kids at home and my son cant even remember what its like to have a mom free of pain that can do all the things the other moms do. While my daughter can remember and doesn’t let me forget she does. She desperately wants her mom back and keeps waiting for it to happen.

Its almost like I wish all my doctors would just come out and say “The likelihood of you EVER getting any better than you are now is highly unlikely,” and just give me the amount of meds that CAN make me feel “normal” again. If they would just quit pussyfooting around me not getting better I would be more willing to be on an amount of medication that would give me the ability to do more, live more. Not that I really have had the option to be on that amount of medication because I haven’t. They are all so unwilling to believe that despite their best efforts they will not CURE ME, they will NOT get me any better than I am NOW. So just get it done and over give me the Implant and the Morphine pump and let me get on with my life KNOWING that this is the way it will be for the rest of my life.

Melissa's Life with Fibromyalgia

So where to start... A little about me first I guess... My name is Melissa. I am 32 (well I will be in 2 weeks). I have 4 awesome kids, ages 12, 10, 6, and 3. I have an amazing boyfriend, and a mostly wonderful family, who without, I would be utterly lost. They have been my strength through my darkest days. 

My story starts around the time I was 14 or 15. I began getting achy and tired all the time. I would get up in the morning, take a shower, go to school, and sleep through most of my classes. I would come home, do whatever homework I had, take a nap until dinner, eat, then right back to bed for the night. At 16, throw in a job, and that was my life. This went on for years. 

During that time, I was tested for mono, and a ton of other things, and everything came back normal. They said it was probably just depression. But for the most part I was happy, so I didn't understand how that was possible.

I had my first born when I was 19, and my second at 20. The aches and tiredness were always there, but for a few years, other than 2 short term rounds of anti-depressants for post-partum depression, I was able to cope without having to see a doc, or take any meds. 

During that time, I lived in Tennessee. I was a GREAT mom. I was a total hands-on mom. Arts and crafts and learning activities everyday. I was VP of the parent committee for Head Start and I was my districts representative at all county Head Start meetings. 

Fast forward to around age 25. I was back in Ohio, separated from my husband, and the aches and tiredness grew worse. Constant nausea, vomiting, and diarrhea daily were the norm for me. Pepto-Bismol, Imodium, and I became best friends (and still are to this day). I was told that I was a hypochondriac by my grandmother, who was an RN, because “nobody can be that sick, all the time.” I didn’t know what was wrong with me, but I knew there had to be something. But I had no insurance, so that meant just dealing with it as best I could. 

I was still working mostly full time, I was my sons den leader for Cub Scouts, then I got pregnant for the last time. My youngest was born when I was 28. After she was born, I went through a really bad bout of depression for a few months. I was still working, but had to give up my position with Cub Scouts, because I just couldn’t handle it anymore, with the way I was always feeling. A few months later, I lost my job. 

Shortly after that, my bf and I got together. I was the happiest I had been in a long time. But the aches and pains just kept getting worse, and my memory had started slipping. All I wanted to do was sleep. 

My mom called me one day, and said she had been talking to a friend of hers who had been sick and thought that what her friend was describing, was what was wrong with me. She said it was called fibromyalgia. I had never heard of it before. But now, I had insurance, so I started thinking about who I wanted to go see. I found a residency program at Flower Hospital, and thought it would be better for me to see someone still learning, rather than someone who had been practicing medicine for years. I did not want to walk into an office and just from describing my symptoms, the doc give me a diagnosis and that be the end of it. I wanted someone who would be thorough. 

At my first appointment, I told the doc what had been going on, but never mentioned what my mom had told me. I didn’t want to put any ideas in his head. I wanted his diagnosis to based on my symptoms and tests. He told me exactly what my mom had said.  He thought that was what was wrong with me. There is a “trigger point” test that he ran on me that day. There are 18 areas on the body that he pressed on. In order to be diagnosed as having fibromyalgia, you must hit on at least 12. That day, I hit 11. He couldn’t officially diagnose me. He ran blood work to rule out anything else and referred me to a rheumatologist.  

I saw the rheumatologist a few weeks later, and he officially diagnosed me. I tried all 3 FDA approved meds for fibromyalgia, Savella, Lyrica, and Cymbalta. The Savella and Lyrica did nothing for me. The Cymbalta was my miracle drug. Within the first week on it, I was feeling less pain and tenderness. But by the end of the second week, I started noticing bruises on my legs. By the time I saw my doc at week 3, my legs looked like I had been beaten. But it was only my legs. Nowhere else on my body did I have any bruising. It was a reaction to the Cymbalta, and I had to stop taking it. Which meant the pain came back. 

From the very beginning I told my 2 doctors that I did not want narcotic pain meds. I wanted to try everything else I could first. I did not want to add an addiction to narcotics to what I already had to deal with. So I went on Tramadol and Flexaril (which if you‘ve ever been on these, you probably know they take the edge off the pain, but it doesn‘t last long), with an occasional injection of Toradol when the pain was intolerable. 

I lost my insurance about a year ago. So that meant I could no longer see my doctors. Could no longer gets the meds I needed when I was really bad. So now I just deal with it day to day. 

Some days are better than others, but more often than not, I am hurting. I don’t leave the house very often either. I have a hard time doing just about anything anymore. I have to force myself to do even the simplest things. I have no desire to do anything, because just to sit down or stand up, takes a lot for me. I put on a happy face when I can, but sometimes I can’t even do that.

I feel like a worthless mother to my youngest, who doesn’t get to experience what a normal childhood should be. Or to have the mom that her older brother and sister had when they were her age. I feel terrible that instead of the fun activities I did with them, that she just has to sit next to me on the couch and watch TV, or play in her room. I feel like a failure to my older two, because I can not be as involved in their lives as I know I should be. 

I hate the fact that I cry all the time. That most days it is too hard to even put a smile on my face. That my kids have to live with a mom who feels like this all the time. I hope and pray that they do not have to ever experience this. 

I feel like I’ve written too much… so I will leave it at that for now. If anyone has any questions, or comments, please feel free to let me know. And thanks for reading my story.

As I promised a few links to help you find the right doctor for you.

The first is Angieslist.com http://www.angieslist.com/
This site is NOT free but the fee to join is minimal.  A year subscription is only $12 and to try it out for a month is $3.95.  Not bad at all and sometimes we do have to pay for the best information.  Here you can find reviews on thousands of doctors made by patients just like you.  Also, you can post your own review!  I havent joined yet but my friends at MDjunction have said wonderful things abou this site.  I am planning on joining soon so that I can give you more feedback.

Web MD http://www.webmd.com/
They have a full directory of doctors across the country.  This service is 100% FREE but there are not any reviews available.  I dont know about you but I sure would LOVE to know what other patients think about a doctor I am considering going to.

LifeScript http://www.lifescript.com/
This site is 100% dedicated to Womens Health issues.  It has several different section from experts in womens health (4), pregnancy, pharmacy, natural health, alternative medicine, nutrition (2), fitness, heart health, and depression to name a few.  It also has a doctor registry when you can rate and leave comments on your doctors. Or you can even go to the Tools section and use the BMI calculator, Calorie/Energy needs and more! Bascically, it is an online womens health magazine with ALOT of extra perks!
I found an article with 5 tips to finding the right doctor for you and you can find that here:
 http://www.lifescript.com/health/everyday-care/health_basics/shopping_for_a_new_doc.aspx?gclid=CMWCiMKRy68CFQ7sKgodNE0HdA&trans=1&du=1&ef_id=KJVPk16yG1EAAIa1%3a20120423140255%3as

About.com http://www.about.com/health/
The Health section of About.com contains just about everything you could be looking for regarding your health including complete sections on Fibromyalgia, Chronic Fatigue, Back & Neck Pain, Cancer, MS, and Migrains to name a few. Here is a link to an article with advise on choosing your doctor:
http://patients.about.com/od/yourdiagnosis/a/doctorright.htm

US News health section http://health.usnews.com/ also has a great article with advise on picking the right doctor found here:  http://health.usnews.com/top-doctors/articles/2011/07/26/how-to-find-the-right-doctor

Well I think this a great start to this topic!  If you have any suggestions on helpful sites or articles, please share!  I hope everyone finds these sites helpful and useful!

Finding the right Dr for you

Ok so this is my VERY 1^st post!!! It has taken much more than I expected to get this and my FaceBook page with the same name Single Moms with Disabilities up and running! (https://www.facebook.com/SingleMomsWithDisablilties)

Before getting started I would like to note that when I use the word Disability I am using it in a broad term to refer to an illness, disorder, or any other health issue you may be facing.

I am currently working on finding reliable information and websites on how to find the best doctor for you. I wanted to get both sites up and running so I published before I had finished with my research. As I am home all day I fight my meds to stay wake and I don’t always win. In fact I rarely win. So getting what I want for all of you is taking a bit longer than I anticipated. But I am sure that you will understand without much explanation and that is on of the reasons why I created this page.

Whether you were born with your disability or like myself it came to be later in life the one thing we all find the most challenging is finding the right doctor that suits you. If you have read my Bio on FB then you already know how difficult it was for me dealing with doctors when my disability began. For the most part they are pretty similar. I left some things out here that are in my Bio (mainly about my personal life) and left some things out there that are in here.

Today I want to give you my list of current diagnosis and what I had to go thru to get them. Getting some of these did not come easily but even though I faced a lot of criticism I didn’t give up. I want all of you to know my story so you know that I do understand. I have been there, done that.

I couldn’t tell you the exact date of my first set of diagnosis but they were during my teen years. My biological father had a plethora of mental illnesses and at least 2 doctors if not more agreed that I had all the same illnesses as well. Including but not limited to Bi Polar, Intermittent Explosive Disorder (IED), Impulse Control Disorder (ICD), Panic Attacks, General Anxiety Disorder (GAD), and Major Depressive Disorder to name a few. It is now believed that the Bi Polar, ICD and IED diagnosis were incorrect. At the age of 15 I began to work and shortly before my 17th birthday my psychiatrist sat my mom and I down to explain to us that after working with me for a year he had come to a grim conclusion. It was his belief that I would never be a full functioning adult. That I would never be able to take care of my own finances responsibly, that all my disorders would effect my ability to get and hold down a job. He suggested that I quit my job because I would need to be on Social Security for the rest of my life and that my mom should get a court order making me incompetent thus being able to control my money and where I live among other things for the rest of my life.

I didn’t quit my job nor did I apply for SSD when I turned 18. I did try to apply at 19 when I was pregnant with my first child (Sierra) by advise of my Primary Care Physician (PCP). I was denied as most people are although I didn’t know that back then and moved on. I didn’t work much the first 4 years of my daughters life, from the age of 19-24. I did take on waitress jobs when my kids father and I needed extra money but never for more than a few months at a time. This was not due to all the metal disorders I was diagnosed with but because I simply didn’t have to and was lucky to have the luxury of being a stay at home mom. When I was 24 my kids father and I split up and by this time I had given birth to my second child, my son Logan.

Rewinding back to 2002 just weeks after the birth of Sierra I found out I had Kidney Stones (KS). I have continued to battle with this for the last 10yrs. I have passes at least 20 stones if not more and currently have 3.

In early 2007 I was diagnosed with Bursitis in my hips. They would hurt so bad that I would wake up in the morning and literally punch my hips to try and get them into place. I did this out of pure frustration and it is not the solution, you can trust me on that. I ended up going thru Physical Therapy (PT) and it help immensely but my insurance like most only allow for so many visits. Once my time was up my new found relief did not last for long. After 3 wks of not going to PT the pain resumed full force. The reality is that even if the insurance would have let me continue for the rest of my life what single mom has the ability to do so?

In 2008 I blew my back out and was unable to walk for a week. I sought out treatment from a chiropractor and was able to walk again and resumed work after a week I did go to see my PCP and they did prescribe some muscle relaxers and mild pain relievers...no narcotics though. After Sierra was born and I found out about the KS's I began to have some serious back spasms that would get me “stuck” a lot. I never sought medical treatment for it and that may have been a contributing factor in where I am today as well as the fact that I didn’t seek out a specialist in 2008. I’m pretty sure now though that it really wouldn’t have mattered if I had seen a specialist way back then. My current doctors were pretty hesitant to anything in 2010 (my current problems) and I’m sure there would have been nothing they could have done other than wait and see. And I know how I am so not knowing exactly what was wrong and the possibility of what was to come was probably best.

After experiencing the blow out in 2008 I was VERY careful not to do anything that could cause it to happen again but my efforts proved to be fruitless. Almost exactly 2yrs later ...23months to be exact...I was at work on a Friday (at a call center) when about 2hrs into my day I was in excruciating pain and the spasms were non stop. The details of what happened the rest of the weekend can be found in my bio on FB but the details needn’t be shared here. They are a bit irrelevant. By Sunday I was unable to walk or even move. I went to see a new chiropractor (my dads) on Monday as the last one I had seen was to far away. I knew there was no way I could make the drive. After a week of treating me he told me that he feared the was something much more wrong than he could fix and ordered an MRI. The results came back that I had 2 herniated discs at L4-L5 and L5-S1. He told me that I needed to see either an orthopedic surgeon or a neuro but preferably the later. As I did not have insurance at the time it proved difficult to find a neuro who would agree to see me. When I finally found one

I couldn’t get in for 6wks. I made the appt but later canceled when I found an orthopedic who could get me in the following week. Unfortunately, he was a waste of my time as he made allegations that I was a doctor hopper, drug seeker and even that most of it was all in my head and I needed mental help.

The even more unfortunate thing was that he didn’t allege these things at the first visit but after he told me to continue to see my chiropractor and ended up causing more damage. First, the radiologist didn’t report that my disc was a hair away (laymens terms) from the nerve root of my left sciatica. Then, the orthopedic didn’t see it himself and sending me back to the chiropractor for 2wks slipped that disc over and pinched the nerve creating an unbearable pain that made its way all the way to the bottom of my foot and eventually causing 75% loss of feeling in my foot and lack of movement in my toes.

Luckily, I was able to get in to that neuro surgeon even though it was nearly 2 months after the onset of pain. Dr. G was a God send as I have told him many times. As he is located at a teaching hospital, the resident came into the room first and spent nearly an hour assessing my situation. When he completed the exam he we to consult with Dr. G. I will never forget the moment I met Dr. G that day. He actually apologized to me for the conduct of my previous doctor. He told me he was sorry that I had been left in this condition for nearly 2months. Before he had even met me he had called another doctor, the head of the pain management clinic, to see me that day. Dr. G informed me that normally it is at least a 6 week wait to see this doctor but he was owed a favor and used it to get me in immediately.

It has now been 2yrs since the initial onset of my symptoms that changed my life forever. Dr. G diagnosed me with scoliosis (that I had been aware of since a very young age), spinal stenosis, degenerative disc disease, 4 herniated discs (not 2) at my L4-L5, L5-S1 and C3-C4, C4-C5, 2 pinched nerves, one to my left leg (which I have permanent nerve damage) and my right arm. I have had one surgery so far that was supposed to go in and shave my disc down to get it away from the nerve but it had calcified so it had to be removed. We are currently looking into a 2^nd surgery for my upper disc that is pinching the nerve to my arm as well as yet a 3^rd to implant a Spinal Stimulator to relieve my nerve pain.

Finding the right doctor for you can be challenging and frustrating. It is easier to give up sometimes than to continue to search. But you cant give up, you have children to take care of and MUST get the treatment you NEED and can not accept NO for answer. Not only did I have problems with that orthopedic but with a neurologist he referred me to as well. He “wanted” me to get an EMG done even though he knew “there would be no abnormalities”. When I went to get the EMG done the neurologist was VERY disrespectful and the ONLY medical records he pulled were my psych records from my teens. He told my mom who accompanied me to the appt that he would do the test but he already knew the results and told her that it was his opinion that it was all in my head and I need psychiatric help! How I would like to shove my current medical records in their faces! But I cant because they refuse to see me so if I mailed it or dropped it off at their offices I'm sure it would end up in the recycle!

And the saddest part is that my problems with doctors does not end there. The family doctor I had at the time was not helpful either. He refused to give me any pain medication that worked and worse than that he put me on a medication called Neurotin or AKA Gabapentin. The side effects of this medication can be very detrimental to your health if you do not get off of the medication as soon as these begin to occur. I did not know this until later of course. I am not a doctor nor have I ever worked in the medical field. After being feed up with this Dr making me feel like a second class citizen I changed PCP's. Thank God I did. Not only was the Neurotin not helping my pain but it was making me hallucinate. Instead of taking me off of it he upped my dose not once but twice! If I had not been taken of that medication when I was I could have suffered permanent brain damage, possibly resulting in having hallucinations for the duration of my life!

If you do not feel you are being treated with dignity and respect, do not feel your doctor is listening to you or if you feel he or she is being dismissive of your concerns you need to contact you insurance provider immediately to get a list of other participating doctors in your area. Go with your gut. You know your body better than anyone and if something doesn’t seem right, most likely its not.

Welcome!

So now that I have this page and the new Face Book page with the same name (find the link below) up and running I figured I should get a post up!  Well this isnt about much of anything but to let everyone know that I am working on a post that should be ready by Friday night.  So please check back in sooon!  I didnt realize how much time this endevor would take!  But I definatly have the time and can't think of a better way to spend it than creating a page that the Single Moms with Disabilites community desperatly needs.  Well in my opinion anyway!  We will see how right I am soon enough after I start getting a following.

(https://www.facebook.com/SingleMomsWithDisablilties)