Hello, and I welcome you to Sunday’s and Smalltalk, where I share my story of living with a faulty partial medical device, a Transvaginal Mesh Implant. Today, I wanted to talk a little bit about medications and how they play a role in what kind of day I am going to have, and also to help bring awareness to how the Opioid crisis has affected patients with a chronic pain condition.
I wanted to share exactly how medications affect me and my most memorable time when I remember that pills were never a part of my daily life. One single day without my medication, can kick start several issues. By keeping track of my daily medication, I have been able to try to establish confidence knowing that I am in charge of my care, this includes medication. I also recommend keeping any Opioid Medications, Benadryl, IB Prophen, even Aspirin, locked away or in a place where youngsters can get their hands on it. I keep a close eye on my medication and I have it locked away.
There was a time where I had hardly took medication and it was like advil or ib prophen. I was really surprised to find out that IB Prophen is a blood thinning medication so if your taking it more than 3 times a day, I would recommend definitely talk to your Doctor. I also keep a weekly pill container that has morning, noon, and night options for pill storage and it helps me keep track of all the medication. It can get overwhelming and I would forget when I took them. It became so bad that I would miss crucial medication times.
By making simple adjustments in my day can make for a more organized day and keeping track of when and how much medications you should be taking. I also have been researching the side effects and so far I mostly have seen that some of them are the same as why I am taking them to begin with. I plan to go over my medications at my Next doctor appointment, in the mean time I will continue to take them as prescribed.
Keeping tack of refills and keeping in constant contact with my pharmacy has helped in making sure that I don’t forget to refill. I also have an option to have my meds delivered to me at my home. Having social anxiety disorder keeps me indoors a lot and I am definitely working on that, it’s a wonderful benefit and I am sure a lot of people don’t know about it, so definitely check with your health insurance customer service and if you are disabled, this could be a great benefit.
On a final Note…. The Opioid Crisis…
Oh I wish I had saved this for a video and I may do one anyway, just on that topic. I am very sensitive talking about this, because I know pain is with us everyday and I didn’t want to focus on this part of my blog post tonight, turns out, I was wrong. I actually am going to go into more information on this than I predicted to myself earlier, I was on Opioids for a very long time, years in fact and it started in my early 30’s when I was diagnosed with fibromyalgia. At the time it only affected my upper left shoulder and my low back. I only needed to take over the counter pain reliever and at one point, I remember, I was at work, and I lifted something out of my lower drawer with my left arm and boom, like someone had dislocated it, I couldn’t move, my head, shoulder’s and my back, it was so bad, I tried not to, but I cried at work, in front of my co workers, bosses’. I have been ambulanced from work due to chest pain. (thank goodness all was ok) Last year around this time, my doctors stopped my Opioid Medicine, and did it knowing I have a chronic pain condition.
Looking back, I still can feel the tension, the pain, and the humility, when I was told by a doctor, one of the hospital heads and a nurse. There was no plan to wing me off, (I will blog on what happened at the doctor’s and hospital) in a future blog, however at the time, I didn’t know how much power the doctors and hospitals have over our care. Since this all happened to me, I have seen and witnessed so much, lack of care, being looked at by an ER doc who said, Guess what, no mesh. From what I have read, you need to do a 3d ultrasound to see if broken up pieces have embedded into the tissue, been trying to get one for a while now and still the same. Now because I am not on direct opioids, my pain has increased so much and that the county clinic’s are not treating patients unless it’s a regular doctor appointment. I really thought that they cared about my well being, my health, they were my medical advisors. WRONG!!!!! I definitely understand that Opioids are not good for us on long term, but there was no back up plan. No help, no assistance, my pain increased and I became their Guinea Pig.
I filed complaints with my insurance company against the doctors who were taking things away, but not really helping me with my side effects from the mesh. I have yet to receive an outcome on that or did all my complaints fall through the cracks, I don’t know. Trust me, I was depressed for a long time, then recently, just before I started this blog, I woke up one day and just decided, I can’t do this anymore, I am going to waste away and I am letting the Government, Mesh Companies, medical doctors are getting away with it.
I got a lawyer to help me with my disability case, and I switched all my doctors. I just started blogging and Now I am trying to help other patients by sharing my experiences. What they did, can make a person feel like they are nothing, it’s a very sad place to be, emotionally, I was broken and I sometimes slip back and forth.
Now that all that has happened and the head of the hospital said to me @ that doctor the President (it was Obama at the time), didn’t want anyone taking any pain medication anymore and as long as I was in their pain management program, I couldn’t get anymore and if I wanted to go to the ER, she was sure I knew how to navigate around there to get my pain medication. I was so humiliated that I called my insurance and requested private doctors immediately. I went just a few months without a doctor until I found the one I am seeing now. It’s been difficult to get an appointment with him. Also there the fact that I quit going to their pain management program because I couldn’t handle the painful back injections to continue because they weren’t doing anything after the 4th time and 8 needles in my back.
I have had the worst time getting standard medical care, here in San Joaquin County. I have received ER care, and my pain had me afraid, afraid of looking like a seeker, because not all my medical records came over from my employer health insurance, Kaiser. My pain is so bad I have really insomnia because of pain. There are too many Patients and not enough Doctors. It’s the 21st Century and with all the technology we have and the population, I don’t understand how this could be happening. I am now on my third Nurse Case Manager with my Health Insurance and I insisted that they stay with me until I felt like I could handle my healthcare on my own. Seeing that I still haven’t had the 3d ultrasound, haven’t been able to pin point why I am having pain in places I shouldn’t be, A (TVM) Transvaginal Mesh Implant did this to me and just knowing what my previous surgeon left inside of me, could help me figure out my next course for medical care.
I really didn’t know what to think about it though, I was shocked, like a deer in headlights. It was like all my motor skills became frozen and everything stopped, I was made to feel a small fish in a shark tank. It was then when I realized, I think I have been labeled an addict. I plan on retrieving all my medical records to see why this happened to me a year ago, yes this happened to me and I really don’t know if that was illegal, I know it was unethical for sure. The county actual has all my medical records because Kaiser sent them all on a disc, however parts have been lost or deleted, I don’t know. Over 500 pages and I am left to wonder, How, Why, and When. Why am I in bed most days, now and WHY DO I HAVE SEVERE PAIN???? I am on nerve medication, I was so tired and I am actually still very exhausted and I didn’t know what to do at that point.
I emotionally shut down, completely, I have been fighting ever since I had this faulty medical device started, when is started eroding into my vaginal wall causing a year of infections, and developing a bigger Auto Immune Disorder. That situation has contributed to me not trusting anyone. My own medical team just quit, like I was nothing, just like that and It made my social anxiety worse, because I felt they let me down as a patient.
My message today is to Mind Ur Meds, understand them and why they are prescribed to you. Read up on the side effects because they can make things worse not better. Openly talk to your doctor about any medication concerns. Always fight for what is right, there has to be another way instead of just nothing. I am hopeful this changes but right now, it’s suffering until I head to the hospital. I am feeling that it be close to time to do that.
I hope I don’t have to go, later Today I am going to spend some quality family time. I will be back for Manic Monday. Thank you all so much for following my blog, I hope the information I have provided is helpful and even if I don’t agree with something, doesn’t mean it shouldn’t be explained to us before making decisions like that. Changing medications, taking away and adding them, with at least discussing it with me first.
Patients with Pain Matter, I am not an addict, my pain is real, and I don’t understand why medical care isn’t’ being provided swiftly to patients like me. Almost 4 years now since I lost my job because of my TVM. Settlements don’t take care of us, now that our life is destroyed.
Michelle Hedgcoth, co founder of westcoastmeshfighter, graphic designer, writer
Thank you all for your support and God Bless You
Today was exceptionally hard with pain, hopefully it won’t be a long night. I haven’t been able to shake it and it could be a number of factors, however I go to see my Doctor this next month. One thing I have done is Journal. I have journals for everything that has happened since the beginning of all this and if I know I am going to a doctor any doctor, I take my medical files with my journal and ask questions. I see my doctor every 3 months, and since my pain is really bad, I just have to relax and realize hey, it’s ok. I am doing my best and that is good enough.
