Wednesday, November 24, 2010

A Special Thanksgiving Request

Hi, everyone! I want to wish you a happy Thanksgiving and send my love to you and your families! I am raising a toast to a pain-free day filled with warmth and love!

While I am not a fan of the Thanksgiving holiday, I do partake in the family hoopla, food (the cruelty-free kind, of course) and the fun. This post is to honor something I am truly thankful for: the Love is Life Foundation (LIL). The following has nothing to do with Ehlers-Danlos Syndrome, but since the holiday is about coming together to celebrate wonderful things we are thankful for, I am hoping you will give it a second of your time. The organization was founded by my good friend, Steve Rosenfield, with a mission to "improve human well-being and alleviate human suffering globally by initiating charitable projects that support fundamental human needs such as shelter, food, education, clothing, and health care." They are currently working with the women in the West African Country of Sierra Leone who suffer from obstretic fistula.  

In Steve's words, "This is an enormous project that we will be putting our energy into for many years to come as we feel women, not only in our country but other countries, do not get the care and treatment they deserve."

The foundation is in desperate need of funding to launch this project, and it would be a wonderful if you could spare a little change to help get this underway. Of course, LIL is always welcoming donations, but with a deadline of December 15th to raise the needed money to implement a clinic in Sierra Leone, time is of the essence. I know money is tight, especially around the holidays, but even the smallest amount could be mean the a world of difference for a woman in Sierra Leone. All of us EDSers know what it is like to live in pain and to deal with the lack of proper health-care, and if you are able to lend some holiday help, it would be so appreciated by myself, Steve and the LIL team. Donations are accepted via the link below, and the goal is to get a $5 from 1,000 people. If you are unable to help with money, they are accepting donations of frequent flier miles and even travel supplies.

According to the West Africa Fistula Foundation (WAFF), "Vesico vaginal fistula, or VVF, is the most common among obstetric fistulas and is an abnormal communication between the bladder and the vaginal wall, which is approximately 98% caused by obstructed labour. An obstructed labour occurs when the baby's head is unable to pass through the birth canal and is jammed in its maternal pelvis. If this condition is not relieved on time by cesarean section, the anterior vaginal wall and the bladder become compressed between the fetal skull and maternal bony pelvis resulting in pressure necrosis. This gives rise to a defect known as a fistula, through which there is a continuous leaking of urine that cannot be explained, [nor] stopped. Other obstetric fistulas include RVF (recto vaginal fistula), where a hole is between the vagina and rectum, vesico uterine fistula, and ureteric fistula among others."

From LIL's website, "for this amazing project, LIL will be working with Dr. Darius Maggi, MD and the West Africa Fistula Foundation. The WAFF was founded by Dr. Maggi who is also the primary surgeon and benefactor of the clinic facility in Sierra Leone. They are a fabulous organization which has created a comprehensive care plan for all the women the clinic serves. We are honored to be collaborating with them and proud to say the West Africa Fistula Foundation has been well received by the people of Sierra Leone. In 2009, W.A.F.F. received an award as Best NGO in the southern province of Sierra Leone and received a civic award for Charity Organization of the year in Bo from the civic organization there."

If you would like to help, please donate here.
If you didn't want to donate, Meeko and his puppy dog eyes are trying to convince you...
Don't forget to leave a comment below so we can keep track! (Anonymous is fine!)

Thanks so much and happy holidays from Dani, Meeko, Steve and the gang at LIL!

Monday, November 15, 2010

Taken aback!

I was surprised today when my wonderful chiropractor told me to start wearing a back brace, though I am not sure why. Telling me to wear a brace is like telling me to brush my teeth - nothing out of the norm! Ha! I am curious to see if it helps with my back pain; the doc seems to think it might. Fingers crossed!

Do any of you have luck with back braces to ease any of the chronic muscle spasms? What about to help with spine/ribs slipping out of place?

Stiffly wishing you a good night full of rest and peace.

Sunday, November 14, 2010

Miracles, Angels, Beds, Oh My!

If you are like me, you spend a lot of time in bed. For the "normal" person, a third of the day is spent is bed, but add to it days that you aren't feeling well, dislocate something and can't walk, are really fatigued, or have a POTS flare, that adds up to many, many hours spent on a mattress. For years, I was sleeping on a horrible mattress. I kept the bed I had my entire youth for a few years after high school, then I just had whatever mattress was on the cheaper side at the store. This certainly affected me in many ways, from lack of sleep to additional pain. A good bed is essential to getting good rest, and also affects back pain and body pain throughout the day. After years of sleeping on partners' beds, beds that I bought cheap, beds that were 20 years old, I decided it was time to make a big purchase - and I couldn't be happier.

Meeko puts up with a lot! Haha!

I looked around for quite a while, and I was overwhelmed by the choices on the market. I had narrowed my selection down to a memory foam mattress or a Sleep Number mattress, but was having a hard time choosing which one. In the end, I decided the memory foam would be the best for my body. I have problems with pressure on joints while I sleep, and I also tend to dislocate things while I am sleeping. I wanted a bed that would take some of the pressure off of my body - something that felt like I was sleeping on a cloud - and I was really hoping the perfect mattress might ease some of the back pain I experience. So, memory foam it was; but, which memory foam??

There are a ton of memory foam beds on the market. Costco sells memory foam mattresses for really cheap, Tempurpedic seems to make the "best" ones on the market, and there were a ton of mattresses in between. I tried a bunch and tried to compare them all, but it was hard not being able to sleep on them to really form an opinion.

I stayed with my brother one night, and he has a knock-off cheap version of the Tempurpedic at his place. It was pretty inexpensive for memory foam, and it was also a pretty firm memory foam. I have never hurt worse from a mattress, not even when sleeping on a 20-year-old one. It took "forever" to "sink" into the bed. Every time I rolled over, I would be laying on a new part of the bed. The mattress would have to warm up with my body temperature and then the bed would give way and mold to my body just a hair. An entire night of laying on rock hard bed until each spot would warm up, then allow my leg or arm or hip to sink in, this left my joints aching terribly. My knees were slipping out all night long. (This is rather hard to explain, but hopefully you get the point = BAD bed.) I found this to be the case with most of the knock-off beds, especially the stiffer ones.

At this point, I felt like Tempurpedic was my only option, and one of the softer ones. The problem, the higher end Tempurpedics were VERY expensive. I was willing to take the good amount I had saved to get a mattress, but these were just out of my price range. Then, I remembered a friend-of-a-friend who had told me about a knock-off version of the mattress that was just as good, if not better, than the real deal. He was head-over-heels for his mattress. The good thing, these beds were a lot more inexpensive. This is when I checked out Angel Beds. I was hooked. The info on the site seemed great, and the customer service staff at the phone number were friendly and helpful. I finally had decided on a mattress, the Angel Bed Sky Supreme-ES, which was supposed to be identical to the Tempurpedic Cloud (the Tempurpedic I fell in love with once I tried it in the store).

I was a bit nervous ordering a bed online. I was even more nervous that I couldn't try the bed ahead of time. They have a 90-day risk-free trial though, and they mean it - sleep on the bed and if you don't like it, send it back. Easy at that. I felt a bit more comfortable knowing that I wasn't completely locked in if the bed turned out to be as horrible as my brother's. They also run a ton of sales, and they often offer free shipping, a hundred or two off the beds, and no tax on the sale. I happened to get in on one of those deals, and my bed was on the way.

Bed arrived, unpacked, and I was...floating on a cloud!! Seriously! This bed was, and is, a dream come true. I still have problems sleeping, and I still have aches and pains, but this bed has truly made a difference in my life. I can sleep for longer periods of time without hurting, my dog can roll over and walk around and it doesn't wake me up, the beds absorbs the movement and I don't feel it. I have less back pain after sleeping, and it was really noticeable when I first got the bed. Yes, my back pain is still bad, unbearable at times, but I really feel like this mattress did make a difference. And, I feel like it puts NO pressure on my joints when I sleep, no matter if I am on my side, back or tummy. I do get enough support, but also enough softness to not feel that "pressure" pain I often do while laying on a bed or couch. 

I am in love with my mattress. A friend bought one after my recommendation and also loves it. He is just as happy as I am. He doesn't have EDS, but lots of us share the bed at night, and it is good to know that our partners or spouses might equally love the bed as well. There is a referral program, so if you do end up choosing to get an Angel Bed, if you use my referral (just contact me via email), you get $50 off the bed, and after the trial, if you keep the bed, I get $50. Cool! That, however, is not why I am recommending the bed. I am not a paid spokesperson, ha! I am not trying to get them customers, although I would definitely send anyone their way. I am just a gal with EDS that has finally found a bed that I am happy - ecstatic - with, and I am excited to share it with anyone else in the market for a mattress.

Here's to happy sleeping!!

Visit the: Angel Beds website


Saturday, November 13, 2010

Hot Dog!

I got up from the bed for a moment and left the heating pad on. Looks like Meeko stole my spot! Ha! Oh, how I love my baby!


Friday, November 12, 2010

First Aid for the Car

Out at the store and shoulder starts bothering me? Ankle gets swollen? Decide to spend a few hours in the sun? It's okay, if I have my first aid kit handy. I have everything I need in one place, and it follows me wherever I go. I wanted to share something I have found very helpful - keeping important EDS & POTS items handy in a "car kit".

My kit is sorted into a handy bag, so if someone else is driving, I just grab it and take it with me. It is small enough to fit on the floor in the backseat, complete enough to have heat, cold, and all of my meds, and helpful enough to give me a quick fix to get my blood sugar up if need be.

I found the perfect bag by Lily Bloom that is made from recycled soda bottles; though, I think it is actually intended to be a lunch sack. I love the large top pouch which fits heat patches and sunscreen, and the bottom zippered part holds the typical first aid gear. You may find that you want to add additional items to yours, or that my list is way too detailed for you, but check out my contents and have fun making a car kit of your own. Hope this helps keep you organized and in less pain while you are on the go!

  1. ACE Bandage
  2. Bandages (latex-free; I like the "gentle" ones!)
  3. Hand Sanitizer
  4. Gas-X
  5. Ibuprofen/Acetaminophen
  6. Antihistamine (like Benadryl)
  7. Wound cleaner 
  8. Butterfly stitches (for those whose skin rips open easily)
  9. Paper tape (I like the kind that is on a tape dispenser)
  10. "Vet" tape/Cohesive wraps
  11. Gauze
  12. Heat therapy patches
  13. Instant cold/ice packs
  14. Pen & paper
  15. Mirror
  16. Chapstick with SPF
  17. Extra meds (like POTS meds, pain meds, bipolar meds, etc.)
  18. Tampons/pads
  19. Pocket knife/scissor/tweezers or combo tool
  20. Sunscreen (change out every 6 months to maintain SPF ratings)
  21. Tissues
  22. Nail clippers
  23. Granola bars
  24. Pretzels or something salty (if you have POTS)
  25. Fruit snacks (or something to raise blood sugar)
  26. Small bottle of water (sealed well)
  27. Anything else you might need!

Yes - you can be more organized than me and keep everything in a separate bag/baggie/container, but this seems to do the trick for me! I always just make sure to bring it with me wherever I go, and if I use something, I replace it right away. Happy and safe travels!

Have a great weekend, everyone!


Thursday, November 11, 2010

Fentanyl's a No-Go

Good morning!

After starting the Fentanyl patch in the early afternoon yesterday, I actually started to feel some relief around dinner time. My pain was not as bad as it usually is - hooray! But, I was feeling a bit "drugged," and I don't like that feeling. By bed time, I was feeling very dizzy and had an awful stomach ache with gas, bloating, and cramping. I couldn't sleep at all during the night, and woke up exhausted. This morning, I made it three hours before I ripped the patch off! Spinning, the most awful headache ever, and horrible IBS symptoms have left me no choice. There is no way I could live like this daily. To top it off, I was shaking like crazy - it was like I was having horrid withdrawal symptoms of some sort. No thanks! I have six more hours of these feelings, since the medicine continues to work for six hours after the patch has been removed. Time for a call to the doctor (and searching for a new one when I feel well)...and I will not be taking Fentanyl again.

Also - if you have adhesive allergies, I do NOT recommend these patches unless you crave red, itchy, very irritated skin.

I hope YOU are having a much better day than I; happy Thursday my lovelies. :) I am hoping to make mine better with some rest and some sunshine...

Here is some beautiful cheer for us all - photos I snapped the other day...

"Autumn is a second spring where every leaf is a flower." 
~ Albert Camus


Wednesday, November 10, 2010

Pain Doctor Causes More Pain

Well...not physical pain...more like stress and frustration. Yep, that was my experience today at my first-ever physiatrist (pain management doctor) appointment. November 1st marked the day one of my Medicare coverage/Medicare Advantage Plan, and so for the first time in a couple of years, I have been able to start going to the doctors again - including specialists like physiatrists! So much for great expectations; it is sometimes hard to maintain realistic goals when looking for an end to pain, and I suppose I put a bunch of my hopes into this appointment and that is what failed me in the end. On the other hand, keeping hope is something we all know is very important, since this is what pulls us through the rough patches, big and small.

Quick note: I owe you all updates on the Banjo, among other things, and I have been slacking on returning emails as of late - I have been dealing with too much pain to put a lot of focus into these the last couple of months. I hope you all accept my apologies and know that I will be updating as I am able.

I spent hours last night prepping for today's appointment with "Dr. Pain." I went into this excited, but I wasn't looking for a miracle. Really, I was looking for an improvement in my daily life, even something small, since I wonder at times how much more pain I can take. I gathered up a pile of medical records, ran to Kinko's even though I was hurting terribly last night, and made copies of everything I thought would be pertinent to my pain management plan. I then scoured through the pages of notes from the EDNF conference and typed up all sorts of tips and treatments I had learned about, including notes and credentials on each of the wonderful people that spoke and key points from their lectures. I highlighted random sections to reference while talking to the Pain Doc. Lastly, I included a few pamphlets on EDS from EDNF. I wanted to be ready for any questions he might have, and since this pain clinic offers many forms of treatment, I wanted to be sure to research all of them beforehand so I had an idea of the things we might discuss. The notes were mostly for myself, but they were important points to talk about with Dr. Pain, and also what I thought would be important notes for him to have.

When I arrived at the pain clinic today, I was greeted with a smile by the receptionist, filled out a form with Xs and Os and triangles marking where my current pain was, and joined the rest of the patients in the waiting room. An hour later, I was finally led back to my room by the nurse, who coincidentally shared my name and commented that I didn't have the worst medical history she had ever seen, but I certainly did not have the best. She comforted me with her smile though, and I was still amped  to meet the doctor.

A short while later, Dr. Pain entered the room. He seemed nice, gave me a hand-shake and mentioned how "great" I looked. He quickly looked over my chart and noted how young I was and then "got down to business."

The next words out of his mouth, "Ehlers-Danlos shouldn't cause pain."

Well, yes, he technically is right. According to Dr. Francomano, "EDS predisposes [a person] to certain kinds of pain, but DOES NOT cause pain itself." However; the former part of the sentence certainly holds true...and PAIN is involved. Of course, Dr. Pain probably isn't really familiar with EDS, and so I kindly tried to explain to him what I have learned about EDS, what I personally deal with, and why my doctors have sent me to a pain management clinic. I handed him some pamphlets and told him I was really glad to be in his clinic and how I was hoping he might be able to help me out with the pain I live with.

The three important words from that first encounter: "tried to explain."

Dr. Pain wanted nothing to do with my explanations, my personal struggles, my life with Ehlers-Danlos Syndrome. Dr. Pain grabbed the EDNF pamphet, browsed it for a split second, then tossed it on the table. He wouldn't take any other pamphlet/papers. He wouldn't look at any of my notes or highlighted questions, even though I asked him to. He grabbed a chair across the room, sat without making eye contact and told me that he didn't think there was much he could do for me.

He asked me why I didn't complete college, and didn't acknowledge my response. He then, very condescendingly commented on the fact that I have been on disability for a while then alluded to the fact that didn't think I should be on it. (All of this, while he doesn't have any idea what my life is like on a daily basis, no idea about POTS or what it is, and no concept of the problems I have physically.) He asked why I was told I have bipolar disorder and then commented that I "seem fine." It was almost as if he didn't believe me when I talked about my bipolar disorder and PTSD, then he just got quiet at the mere mention of childhood abuse. He then profusely apologized for said abuse, but continued to question why I wasn't "acting like I had bipolar disorder." When I explained that I have been in treatment for an entire year this go-round , and that I am happily stable on my medication (trust me, there have been times where I have been very unstable) and therefor more ready than ever to start working on the physical side of things, he brushed it off like I hadn't even spoken a word. He then told me that I must stay in psychiatric treatment. (What?! I told him I was happily in treatment - wasn't he just the one questioning my bipolar disorder in the first place?)

While remaining cordial through the whole visit, Dr. Pain was almost ambivalent toward my pain and symptoms. One minute he was mentioning the medicine he wants me try, the next he was telling me that he is concerned I will become addicted to pain meds and that he doesn't like the idea of putting me on narcotics (though I am already currently taking them), and that my bipolar disorder makes it more likely. I mentioned to him that EDS patients often struggle with this, but treating the pain is important and my psychiatrist even has agreed that I have more depression due to the pain. Crying every night from back pain definitely has an effect on my mood. I also attempted to tell him that I don't like taking narcotics, or drugs of any kind, and am trying alternative treatments too, but I really don't know what to do because I hurt so badly. If we found something less potent, I am certainly open to anything. I didn't come to the pain clinic for drugs. I came to ask about drugs, trigger point therapy, prolotherapy, needling, etc. Of course, I couldn't get a word in edgewise about any of this.

The next words he utters are about the fact that I look great, got dressed this morning and did my hair and must not be in much pain (quite the contrary!), and then tells me he is putting me on Fentanyl patches and wants me back for trigger point injections, and for break-through pain from things like subluxations and dislocations I am to take an inbuprofen (Really? An ibuprofen??). First, every patient in the waiting room got up, got dressed, and did their hair - I looked all around me while sitting for an hour and not one person was in their pajamas. Second - Fentanyl patches?! This from someone who doesn't think EDS patients deal with pain.

I, again, got out the stack of papers I had brought and asked him to look through the notes from two of my favorite doctors - my geneticist from Johns Hopkins, Dr. Levy and a hero in the crusade for EDS treatment and research, Dr. Brad Tinkle. During the conference, Dr. Levy had mentioned the idea of treating EDS with a "cocktail" of things to control muskuloskeletal pain, muscle spasms, depression, sleep problems, etc. Dr. Brad talked about this as well, and mentioned great ideas for drug therapy, but also integrative therapies, the importance of staying active, and a few other very important facets of treatment. My ONLY desire for this appointment with Dr. Pain was to discuss some of these options, with the focus being mostly on the drug end of things since this was a Pain Clinic, and to hear his thoughts. I never got the chance.

Dr. Pain walked out of the room to end our session while I was mid-sentence. I managed to get him back in the room to answer a question about Prolotherapy, but that was it. I never even got to mention Dr. Brad or Dr. Levy's great information. I left with every paper and pamphlet I came into the clinic with, plus a urine cup to drop off on the way out for drug testing, and a prescription for Fentanyl patches. Dr. Pain was in the room for no more than 5 or 10 minutes.

So, my 10 recommendations for visiting a pain clinic:

  1. Do not get up, get dressed or do your hair.
  2. Do not "look good." (What does that even mean?)
  3. Do not have bipolar disorder.
  4. Forget having the doctor talk with you about YOUR concerns.
  5. Don't smile. It makes them think you aren't in pain. It doesn't matter if you try to be a cheery person in public. This will only count against you.
  6. Do not plan to discuss cocktails. Even the non-alcoholic kind. 
  7. Do not think of mentioning Dr. Brad or Dr. Levy.
  8. Ask for Fentanyl patches when you "look good." Apparently you will get a prescription.
  9. If you come in with notes and are prepared, the doctors will call you "smart." Until today I didn't know, but smart people don't have pain.
  10. Bring tissues and good music in your car. You will need the tissues for the great cry you have when you leave the pain clinic. You will then need the music to cheer you up.

Ha! Of course, this isn't news to any of us. I think most EDSers, me included, have struggled for years with doctors that don't listen and those who ignore most everything we have to say. It certainly is frustrating when you see a light at the end of the tunnel, and find out that it was just your imagination. The thing we have to remember, we are always our own advocate. We have to take responsibility for our health care, and there isn't one solid answer on how to do things. We can pick and choose as we learn, and hopefully there really is a light at the end of the pain just might be a little further down than we planned.

I am really troubled as to whether or not these Fentanyl patches are the next best move. One problem with me and pain meds are the horrible side effects. The chronic constipation caused by pain meds has landed me in the doctor's more than once, and I have been on a mission to find something that actually works without causing me any more pain than I already deal with. These patches might cause less constipation, but no telling for sure. I am really looking forward to the trigger point injections, but I am leery of this path for the drugs. I have decided to start them just to see if they allow me any relief, because I really am at my boiling point by the end of the night, every single night. I have started on a low dose, a 25 mg/hr patch. Each patch lasts 3 days, and it is the equivalent of taking 5 or 6 5/500mg Vicodin a day, which is about what I am at right now. I am on a two week trial of this drug, and I will do more research between now and then, as well as see how my body responds to it. And, yes, the adhesive on the patch has already caused irritation and redness and is itching like crazy. I have to talk to my PCP about whether or not to continue the Flexeril, since Dr. Pain walked out of the room before I could ask. I am still working to find standard and alternative treatments, and am going to be searching for a new pain management team as well. I will go back to this clinic for the time being, as Reno is small and there aren't a ton of options, but I am not one to stick with a doctor that I don't like. For now, Dr. Pain it is. And, who knows, maybe he may help take the pain away.