Thank God!

Literally! I was finally able to go to the pain management doctor yesterday, just in time to avoid going through withdrawals. (See post Sitting ’round the Kitchen Table 2) So, here’s how it went:

ALDOT (Alabama Department of Transportation) finally got the roads and highways cleared of the abandoned cars from the snow and ice from Tuesday (my appointment day). The roads were sanded to help with the ice (yes, they use sand instead of salt. Why? Don’t ask me!) and the staff at the doctors office were able to make it in. I called shortly after 9:00 am to see if they were open, but the message on the machine said that they were still closed because of the weather. I started panicking again because I was completely out of pain pills and my patch was supposed to be changed today (Friday). Around 1:30pm I sat crocheting trying to calm my nerves and the idea popped into my head to call the doctors office again. I was convinced that they wouldn’t open clinic back up until today and then not be able to get me in because of how many patients they had missed. However, I had this URGE to call, so I picked up the phone and dialed (ok, that’s a lie. Who dials anymore? I pushed “call” on their contact page in my phone…doesn’t everyone?). To my surprise, the “this office is closed due to extreme weather conditions” message was gone and it gave me the option to speak with the receptionist. I was thinking “this can’t be…it’s a joke, right?” but I was put on hold and less than 30 seconds later a receptionist answered the phone. The first words out of my mouth were “Thank God you guys are open!” I proceeded to explain that it was impossible for me to make it to my appointment on Tuesday because of the roads being blocked by wrecks and abandoned cars and how I was completely out of my medicine. I truly expected to be told that they wouldn’t be able to get me in until next week, but a few seconds later, the lady asked me if I could come in that afternoon. Hell yeah!

Actually, I said “absolutely” and she gave me an appointment for 3:30 pm. I was ecstatic. After so much worry and anxiety about not being able to get in and having to go through withdrawals, it was definitely good news. I threw my hair up in a ponytail, got dressed, and ran slowly made my way out the door…hey, there’s still ice around here. I made it safely to the doctors office where I was seen in record time. I told the nurse practitioner about how scared I was and she told me that they would always get me in and that I didn’t ever have to worry about going through withdrawals…not because of something like this…and when the time comes and I’m ready to stop taking the medication, then they will wean me off in a safe way. It made me feel better knowing that they aim to prevent it as much as I’m scared of it.

The visit went well. I am staying on the same dose of medication since it has been helping and has finally gotten me out of bed! We discussed nerve blocks again. There is only one nerve block left that they can try. I have been debating this one for a while now, but finally agreed to go for it. Who knows, it may be the one to work. That is assuming insurance will pay for it. So, I figure if it’s meant for me to have the nerve block then it will be approved by insurance and if not, then it won’t. I am totally leaving it in God’s hands right now since he “spoke” to me yesterday. For the first time in a very long time I don’t feel as though He has abandoned me. I’ve always known he hadn’t, but honestly sometimes I felt like he had. Well, yesterday he made up for it. Oh, and the NP gave me the number to a place that does “the ROLF method” or visceral manipulation (I think they’re the same, but I need to look it up and check in case any of you have questions about it). This was very exciting because I have looked into various “alternative” treatments and this seems to be the best suited for my ailments. I still have to check with insurance, but I don’t believe that it will be covered. I’m hoping and praying that the treatments aren’t that expensive because I would love to be able to try it to see if it actually helps. The thing is, I didn’t even know there was anyone in this area who did this type of manual myofacial manipulation so it is quite exciting to know that there is someone locally.

I got out of the doctors office in record time and made it to the pharmacy without incident. I got my medicines refilled and made it back home safely. I truly thank God for his help today and for finding a way to take care of my needs.

What happens when patients know more than their doctors?

What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study – BMJ Open

Those of us with rare illnesses and mysterious “syndromes” have had to become experts in our own conditions because most doctors won’t be familiar with it.  No doctor can specialize in every rare illness, so it’s not surprising that they may not be familiar with ours, but doctors should know enough to know when they don’t know.

When doctors believe they know better just by virtue of being a doctor, problems arise.   This lengthy and detailed study finally validates the resistance and rejection we encounter when we know more than our doctors about our illness.

To read more, click on this link:  What happens when patients know more than their doctors?.

This is exactly the problem I face when seeing a general practitioner!

Sitting ’round the Kitchen Table 2

Image credit: eBay.com

Image credit: eBay.com

This week has definitely had it’s ups and downs. The ups were that A) I’m doing better on this new medicine B) M and I decided to work things out, and C) I bought a chromecast which is really cool. Now, the long list of downs. First of all I have been spotting this week. One day spots, then two days without. Two days spots, then one without. The last time this happened, I had a polyp or two on my uterus. I’m praying that this is not the case this time because I really don’t want to go through another surgery right now. I’m hoping that it’s one of two things. 1) Not taking my BC pills at the same time each morning (it only varies by an hour or so, so that shouldn’t be it) or 2) not doing my stretches like I should. These were the two suggestions given to me by ladies in my adhesions group on Facebook. So besides the menstruation-like pains and the severe bloating, my week was pretty good until today.

Image credit: http://briansroom.com

Image credit: http://briansroom.com

M and I had a long talk and we were trying to work things out. While this made me very nervous, it strangely settled my nerves at the same time. He had a list of rules and he knew that any breach in those rules will put us back where we were before. Today was a rough day. I had an appointment at pain management. They called to say they had a lot of cancellations and did I want to go in early. Sure. It was cold, snowing, and I wanted to get back home before it got any colder. Well, what would normally be a 30 minute drive took 3 hours. Every time we chose a road, it was blocked because of a wreck. So we would go another way just to find it was blocked. We tried four different routes before M started to loose it. I decided that it must be the stress of driving on very icy roads. We finally gave up and came back home. My nerves were shot. I took my medicines and a nerve pill and then decided that I would crochet to finish calming myself down. Since it was 7:00 pm, it was too dark for me to see with just the lamp on my bedside table. I asked him to turn the light on because he was closest to it. He conveniently ignored my request. When I asked again, he blew up. Same as old times. He said that he was going back to “his” room where I wouldn’t ask for the light to be on all f*%$ing night long (it was only 7:00!!!) that he guessed that was what I wanted anyway because I am happier with my cigarettes and my drugs. Whoa! Where did that come from? So, once again, I am just a drug addict according to him. I am so very tired of being insulted. I’m done. If someone in his family is reading this, I’m sorry, but I have put up with as much of his self-centered, insulting, bullshit as I can take. I’m done.

I had bought a Chromecast. Since all I have is a digital antenna in order to save money on cable, this Chromecast is awesome because all the cool stuff I can watch on my laptop or tablet can now be watched on the big screen. Well, he decided to take the tv with him when he left the room. So much for my new toy.

You know, when I started writing this post yesterday it was full of good news. Positive things. However, in one split second, all of that has changed. I had to erase most of what I had written to tell you guys about what’s going on now. My good news about M is bullshit now, I can no longer watch the chromecast I bought because I don’t have another TV, and I am so upset that I am physically shaking. Oh, and the icing on the cake is that I don’t know when I will be able to get another appointment with my pain specialist. Since they are only allowed to write the script for a 30 day supply and those 30 days are over, and because like usual no one answers the phone there, I have no idea when I will be able to refill my pain meds. So, now withdrawal…the one thing that scares the shit out of me…is most probably imminent. I need a friend so bad right now. Of course, I know that there is nothing that can be done or said to change anything that has happened. It just hurts so bad – I hurt so bad – physically and emotionally. It’s my own fault for getting my hopes up again on a sorry SOB (no offense to his mother because I love her) who doesn’t deserve my tears. That doesn’t make them flow any slower. I so wanted to write a positive post for a change, but I promised you guys I would be real, so here it is. My real life for all the world to see. I guess I should feel ashamed for “airing my dirty laundry” publicly, but I only have you guys who care about me. I guess that’s it. Off for a good cry now and to try to figure out what was so bad about the freaking light being on. If it was 2:00am I could understand. But 7:00pm…really?

Image credit: http://we heartit.com

Image credit: http://we heartit.com

How perception changes an illness: Neha Kinariwalla

This is amazing work being done by Neha Kinariwalla. I believe that it could apply to all illnesses, visible and invisible. Please take the time to read my friend’s post and watch the video. How do you think we could get involved?

 

Patients are profoundly affected by societies perception of their illnesses. So much so, that their own wellbeing can be at stake. Neha Kinariwalla is here to explain why this perception matters, and more importantly what we can do to change it. In this thought-provoking…

To read more and see the video, follow this link:  How perception changes an illness: Neha Kinariwalla.

My Interview With Sue Jones from “It Goes On”

I was honored to be able to interview with blogger Sue Jones From the blog It Goes On. Here is that interview. Don’t forget to click the link at the bottom to read the actual questions and answers.

Fellow-BloggerThis evening I am speaking to a blogger who I really don’t know that well yet but also met through the Share Your WordPress Blogs Facebook page. Joy’s blog Joynpain2 is full of anecdotes of her life. Joy’s story on her About page takes you through her journey from anxiety to chronic pain from scar tissue, adhesions and fibromyalgia. Joy has had a lot to do with doctors and recently asked her GP to read her post Open Letter to General Practitionersbut he did not take kindly to it unfortunately and seen in her post Appointment: Fail. However not all of Joy’s posts are medically themed. She recently also posted Sitting ’round the Kitchen Table with an update of how life is going for her right now.

To read more, check out this link:  Fellow Blogger – Joy from Joynpain2.

I Hate My Life Sometimes

Image credit: http://briansroom.com

Image credit: http://briansroom.com

I hate my life sometimes. Today is one of those days. This morning the alarm on my iPad goes off to let me know that it is time for my pain medication. I open the drawer to retrieve it and…BAM! It is not there. Panic mode set in and a million thoughts went through my head:

  • Did I move it?
  • Did someone steal it?

    Image credit: http://drgenecobb.com

    Image credit: http://drgenecobb.com

  • Where would I have moved it to?
  • Why would I have moved it?
  • Was someone in the house?
  • I haven’t had any visitors.
  • Did someone break in?
  • I just knew I should have purchased a safe.
  • Why haven’t I priced small safes?
  • This can not be happening?
  • What will I tell my doctor?
  • Will he believe me?
  • Will he replace it?
  • There’s no way he would replace it.
  • What am I going to do for the next week without any pain medication?
  • I will be completely bed-bound. Worse than I am now.

I proceed to go on a wild goose chase looking for my pain medication. I re-checked the drawer. I pulled the drawer completely out to look to see if it had fallen behind. I checked the other drawer (meaning I pulled every bit of junk out of it – and there’s a lot of junk!) to make sure it wasn’t there.  I looked under the bed. I looked on top of the bed. I looked in my crochet bag. I sat down and cried. Then I had the strangest thought. Did I throw the box away? I checked the trash in my room, but I had taken it out the day before. So out I go outside in the cold (without a jacket because like I said, I’m panicking) to bring in the trash bag from outside. I cut open the bag and found the smaller bag from my bedroom.  I cut it open and began pulling things out. Finally, I found a box. I’m thinking, please God let this be it.  Luckily, it was.

I bet you’re thinking “well, if you found your meds, then what’s the problem?”  Well, the problem is that life shouldn’t be this way.  Not for a 32 year young woman. First of all, I shouldn’t have had the brain fog that would allow me to throw almost a whole box of medication away. Second, I shouldn’t have to panic and worry about the immense suffering  that I would go through without my medicines. That one thought alone scared the shit out of me. I’ve been on medication for a long time and it seems my pain was just starting to rear it’s ugly head when I started taking it.  The one time that I forgot to take any of my daily medications was because of a partial seizure. It’s easy to forget medicines at a time like that because with partial seizures you don’t feel pain. When I finally came out of it, the whole day had passed and it was around 5 or 6 in the evening. I had missed at least two if not three doses of my medicines. When the sensation of pain finally hit me, I was miserable. Actually, miserable does not come close to describing what I felt. So the thought this morning of going back to that kind of pain truly scared the shit out of me.

I am just starting to calm down a little thanks to a dose of Ativan. My thoughts now are in pricing a small safe in case a visitor or a thief decides to “borrow” some of my medications. Of course I know that’s not what caused the panic this morning, but there is absolutely nothing I can do about the brain fog making me do stupid stuff. I will, however, try to be more aware of what is going on around me. I mean, I go into my medicine drawer four times a day. I should have noticed before today that the box was no longer in there.

I hate feeling this way. I hate the fear. I hate the fact that I NEED this type of medication. I’m sure my day will get better, but for now, I am throughly freaked out.

 

What do you do to protect your controlled substances? Do you have a safe? If not, do you ever think that you might need one?  How does it make you feel to have to take this type of medication? Do you ever think about what your life would be like without it?

 

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Appointment: Fail

I had a doctors appointment yesterday with the doctor who missed my UTI right before Thanksgiving. I took a copy of the post I wrote, Open Letter to General Practitioners. I asked him to please read the letter all the way through before commenting. I was hoping that he would understand my concerns and agree with them. However, I wasn’t so lucky.

He immediately became a little bit defensive. He swore that he sees UTIs all the time and that the lab report, which was positive for both bacteria and leukocytes (white blood cells) was not indicative of a UTI. He said that he was not implying that I didn’t have one a week later when I saw my specialist, or that the antibiotic I was given didn’t help my symptoms. Simply that I did not have one when I saw him. I asked if it was possible that I did have an infection, but that it wasn’t bad enough to register (haha) on the lab report. He held his ground that no, I did not have an infection when I was in his office.

As far as the specialists are concerned, he said that I have to remember that I am a very special case with extreme intestinal issues and that I will always need to consult with my specialists. He referenced my pain and anxiety medications as examples of why he couldn’t be responsible for refilling my medication. I told him that I wasn’t referring to those medications and that I was aware that I would have to continue seeing both my pain specialist and my psychiatrist for those particular medications, but that I was talking about the rest of my medications. Again, he said that I am a very special case and that I will always have to check in with my specialists. He was missing the whole point. I never said that I was going to quit seeing my specialists, simply that he be the one I see first. Oh, and remember that this is the same doctor who refused to refer me to a rheumatologist…a specialist.

My current concerns were that I am having joint issues, mainly my knees and my hips. Also, I am having a hard time sleeping. I only sleep for two hours at a time before waking up and having to try to fall back asleep again. He said that he believed that my hip discomfort is a result of bursitis and that my knee discomfort a result of my tendons, not my joints. He said that the only treatment for those conditions are NSAIDs but that since I am sensitive to NSAIDs, he really couldn’t do anything about either one of those issues. He said he believed that once I start sleeping better with the medicine he was going to prescribe for my sleep issues, that he thought that the pain/discomfort I feel won’t be so pronounced. The medication he wants to give me for sleep is a Serotonin re-uptake inhibitor that was originally marketed for depression, but is really not effective for depression. I reminded him that I have an extreme sensitivity to depression medication (for more info, check out my About Me page) He said that since it was never really effective for depression, that he didn’t believe I will have a problem with it. By this point however, I don’t know whether to trust him or not. I think I will call and consult with my psychiatrist about whether I should take the medication or not. I will feel safer that way and besides, if I react badly to the medicine, she will be the one who will have to clean up the mess.

So, all in all, the visit was a FAIL. Since he still feels the need to be untruthful, I will begin researching the other GPs in my area. I will stay with him until I mail in the disability paperwork he signed for me that will help me with my school loans and wait for it to be processed before switching doctors. In the meantime, unless I have the flu or a cold, I will continue to consult with my specialists for all my other medical needs. When I do switch doctors, I will proudly carry a copy of my open letter to general practitioners with me so that we begin our relationship on the right foot. I know that good, honest, transparent GPs are out there because I had one at one point. Because of insurance reasons I am no longer able to see her, but I will continue the search for one like her. I will not give up until I find one.

Open Letter To General Practitioners

This was inspired by the article “Open Letter to Normals”.

These are the things I would like for you to understand before you see me…

Please understand that being sick doesn’t mean that I am not still a human being. You may need to poke and prod on me, take my blood, and submit me to radiation, but please realize that I am a PERSON with FEELINGS. Please discuss all tests, diagnosis, and treatments WITH ME instead of just TELLING ME what’s going to happen.

Most of the patients you see may have a cold or the flu, but I have been sick FOR YEARS. I am not your typical patient, I am a patient with a CHRONIC ILLNESS. You will probably see me more often than your typical patient, but that does not give you the right to say “so, you’re back…AGAIN”. This does not make me a hypochondriac. Between my body working against me and the side effects from medications working against me, I am under constant attack – and I will need your help to get through it. Do not just assume I am here because I want to be, or to torture you. I am the one being tortured.

I am unlike most patients. I KNOW MY BODY. I have had plenty of time to get to know all of its quirks. When I tell you that something is wrong, then SOMETHING IS WRONG. Do not assume to know how I feel. LISTEN TO ME and I will tell you. Sometimes, I will even be able to recognize what’s wrong. Don’t dismiss what I tell you because you think that it is impossible for me to know. Listen to the symptoms, do your tests, and you just might see that I am right. Why? BECAUSE I KNOW MY BODY.

Yes, I may have specialists. However, it it your job as my PRIMARY CARE PROVIDER to be my PRIMARY doctor and the link between myself and my specialists. If you are so busy with your cold and flu patients that every time I come to see you, you waste my time by sending me to my specialist, then I can and will find another doctor who is not too busy to make me a priority. For example, I should not have to call four different offices to get medication refills when I can call you and you can refill them all for me. However, know when enough is enough. If you are stumped as far as what to do next with my care, then we can discuss my going to a specialist.

Again, I am not your ordinary patient. I do my homework. It’s even possible that I know more about my condition than you do. So do not try to sugar-coat the facts. I AM A BIG GIRL (or boy) and I prefer you speak openly and honestly with me about what is going on. If you don’t know, then SAY YOU DON’T KNOW. I will only respect you more for your honestly and then we can work TOGETHER on what to do next. This might be a good time to send me to the above mentioned specialist.

Trust me, I understand that dealing with a patient with a chronic illness is no day in the park. But with honestly, respect, and integrity, we can work together to facilitate my healthcare for both of us.

What do you think about this open letter? Are there any changes you would make? Would you show a copy of this letter to your General Practitioner the next time you go, or when going to see a new one?

Open Letter to “Normals:” Please Read

I came across this letter posted on another blog.  It was originally written to help understand what people with Fibromyalgia live with.  But it is pertinent to all the patients who are and family member of the chronically, “invisibly” ill. So I tweaked it a little. And would be forever grateful if you took a moment to read it (and share it)!

Open Letter To Normals,

These are the things that I would like you to understand about me before you judge me…

Please understand that being sick doesn’t mean I’m not still a human being. I may have to spend most of my day flat on my back in bed or on the couch in jammies, and I might not seem like great company, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

To read more:   Open Letter to “Normals:” Please Read.

Calling All Fibro-Bloggers!

I’m calling for some help from the wonderful Fibromites in my life (as well as some of the ones that I’ve yet to meet – Hello!). I have started a new page that I’ve been meaning to get out of my head for a while. It’s a page with all of the things that I’ve done to treat my fibromyalgia pain and how it went for me (or in this case – for us). Whether it was a…

Read more: Calling All Fibro-Bloggers!.