Torture Tuesday (My day of Pampering)

Torture Tuesday (My day of Pampering)

**Disclaimer: None of these pictures are of me or anyone I know. They are random pretty people off the interweb I found in a Google search for images.**

Guys, I try to be understanding, you know? I try to remember that no one knows the hell we go through in our bodies but us and that it is pretty near to impossible to imagine, but, holy heck, sometimes I get so tired of being the understanding one. You know?

So here is what happened….. My best friend and I are getting ready to take a 9 hour road trip with 4 teenagers (2 boys, 2 girls) to go to the beach for a week. Now my friend will do most of the driving and the girls are going to drive their own car so we won’t all be jammed in one car. Whew! That’s a relief. I am however really worried about being able to make it through this vacay still on my feet. This is my first one of this length since I got sick. Last year we went to Hilton Head for 3 days and it kicked my butt. Anyway…. I was trying to get all my “stuff” done early this week so I could rest Wed., Thurs., and Fri., then packing up with help on Sat. I ran errands Mon. morning then came home around noon and napped the rest of the day. That left me with a ton of stuff to do yesterday!

So…. first, I needed to visit some thrift stores to look for a push wheel chair or transfer chair. I need a way to make the 300 yard trek from the hotel to the boardwalk to conserve my energy and  protect my back because walking makes it hurt. Then I was A shopping cart full with groceriesgoing to get my eyebrows waxed because EEEk!, grab a couple groceries at WalMart that only come from there,  get a pedicure because again EEEk!, pick up a prescription, get a massage/myofascial therapy to help with back pain, and go to Super Target for sunscreen, groceries that only come from there, check for clearance sand toys, stuff like that. Whew!!!! That is a lot for a girl who is only out of bed for an hour or so at a time!! So I decided to cut the thrift stores out. I had already visited a ton with no luck and Walgreens had one on sale $50 off and I had $20 reward to use, so it wasn’t too bad. Then I bumped into my Mom at the Hair salon and begged her to get the Walmart groceries for me while she was there. Grocery shopping is the worst on my back so I was very grateful to her for doing that for me. Ha! Three things off my list.

Now, waxing. As you can imagine, that is pure torture with my sensitive nerves. Fibromyalgia makes your nerves about a hundred times more sensitive than the average fdgaswfdascdascaspersons at least. Sometimes we are hypersensitive and it is even worse. Today it was bearable but barely. The stylist always laughs at the faces that I make when she pulls the strips off. I also make little screams. I apparently scared a teenager out of trying waxing yesterday. Sorry honey.  It isn’t that bad really. Only lasts a minute and much quicker than plucking. My arms are so weak though that I can’t pluck my own eyebrows anymore. I have to go get them waxed about once every 3 weeks. Okay, torture part one, Over.

IMG_1733Now on to torture part 2. img_17341.jpgThis one is not too awful bad.. Lol. Getting a pedicure has it’s good parts. Soaking my feet in the nice warm water helps take out some of the toxins in my system and just plain feels good. However, my feet are very callused and also I get the one that comes with the sea salt scrub so that isn’t pleasant. Overall, the pedicure is one of the better parts of the day with minor torture thrown in. I got my nails painted my favorite shade of blue and she painted little palm trees on the big toes in honor of going to the beach. I have never done that before.

trigger-point-therapy-nycSo then I rush across town to the massage therapist. Now she is not just any old massage therapist. She is a mean massage therapist. Lol. Just kidding. She practices Myofascial Release Therapy which she learned from the guy who came up with the treatment. jkgghjkfhgjdghsfBasically, it incorporates massage and PT and she digs right into those trigger points to get them to gthjghjkljklhjkfrelease and relieve the pain. At least that is what it feels like to a layman. I have a few pics I am going to post but if you have140527_legmassage fibromyalgia I definitely recommend you look into it. I cannot afford to go to her as much as I would like but I can always tell a difference after she works on me. It hurts like heck. Sometimes I groan or ouch or make a little squealy sound, but I really try to not be a baby about it because it really helps. It kills me though when people are like acting all jealous about me going to get a massage that is torture for me and I try to explain but they are just like oh yeah, sure…..

After all of that I finally get to go to Target (Heaven on Earth), and I really just want to go home and go to bed. I know that if I do I will have to come back out another day and do it and I already know I will be laid up tomorrow. So off I go to Target. I use the zippy cart and barely make it through.yhtyghrfg I finally get out of there and home. I have been going from 9 am til 4 pm. I lay down immediately and sleep til 9:30. I only get up then to use the bathroom when my kids wake me up to make sure I am ok. Lol Before I got sick I could have done that and come home feeling refreshed and happy and ready to tackle anything. But now I just feel like I have been hit by a truck and I could sleep for a week. I definitely overdid it. Such is life with Fibro. It really sucks. Tell me about your experiences. Do you feel like some of the things you used to love before are now torture? Can you handle massages? How do you handle it when you have to put in a full day? How do you prepare for a long trip? Leave me a comment guys. I would love to hear from you!!

image1 (1)

We CAN do this!!

We WILL do this!!

Now GO!!

Gentle Hugs,

Jill

 

Advertisements
Tips for a better Doctors appointment

Tips for a better Doctors appointment

We have all been there. The horrible Drs appointment where the Dr hardly looks at you, doesn’t really listen, probably throws a prescriptiona434330f30630a030c58d1240e88426c at you and you leave either so angry you could scream or in tears. Even before I was diagnosed with a chronic illness I experienced a few appointments like this. Once you have that chronic illness diagnosis though…… I think it gets 10 times harder to be taken seriously by some Doctors.

In my town there are not very many Rheumatologists and since I cannot work, I am on Medicaid and the state insurance so that severely limits who I can see. The first time I saw my Rheumatologist I left in tears. First of all, even though she did diagnose me as having fibromyalgia and early degenerative arthritis in my hips and lower back after a pretty thorough exam (good thing), I felt like she was more than happy to push me off on  my GP to treat my fibromyalgia and get rid of me. Second, she kept telling me that inflammation had nothing to do with Fibromyalgia and Autoimmune Disorders (huh?) and asking if I had read anything about them. I said of course I had and everything I read said they did. It rubbed me the wrong way. I felt talked down to and treated like I was an idiot. So, even though the appointment was successful as far as outcome, I left not liking this DR at all.

4bbde3880f8a52e6039b4df67c9c5888My next appointment was kind of the same in that I felt like she was wondering why I came. It was a year later and I was following up with her because my disability case was coming up and we would need a statement from  her. I had gotten worse and wanted that documented. I still was not happy when I left. Again, I felt like she treated me like an idiot. However, my special ed training had picked up on the first visit that she might be on the very tippy top of the autism spectrum and I was pretty positive of it after this visit. This might account for her lack of bedside manner.

Yesterday, I had an appointment with her. A couple of months ago, I started experiencing pain, weakness, numbness in my arms that was new and progressed at a very quick and noticeable rate. My GP wanted me to schedule to see her when his blood tests came up negative. So I went. Unwillingly. Unhappily.

697Guess what?! It ended up being the best appointment I have had in a very, very long time with a DR. She sat down with me for about an hour and listened and asked questions and ordered tests and didn’t treat me like I was crazy. She didn’t blame everything on the fibromyalgia. She told me I was right to be concerned and I was right to come in to see her. She said she would call me with the blood test results. She was understanding and treated me with respect. I left feeling understood and validated. It was amazing and wonderful.

What was the difference? I can’t say for sure but I was better prepared this time. I took a list of all my medications, of course, with dosages. Standard protocol I know. I also made a list of all new symptoms since my last visit that was detailed enough to help me remember what all I needed to tell her about them. woman pain picmale pain picI made a list of all the questions I wanted to ask. I also included a picture of the female body with a color coded depiction of what my pain looks like. She commented that that was a very good idea. I will attach the blank document for that if you guys would like it. I have found it helpful. I have a male and a female.  There are lines at the bottom for you to do a legend of what the colors on the chart stand for. Also, just FYI, the sex organs are blocked on the papers you will print. Just click on the links below.

pain chart pic

pain chart pic male

I know how terribly frustrating and demoralizing it can be to deal with Doctors when you have a chronic illness. And we see A LOT of Drs. However, by making a detailed list of new symptoms, any questions or anything you want to discuss, and filling out the pain drawing so he/she can see just how widespread your pain is, you are empowering yourself to take control of your health. Don’t be afraid to Google stuff and print out articles to show your Dr if you need to. Don’t take 20 articles in there but one is okay. Information is power.

I hope this very long (sorry) blog post had something in it that will help you at your next DRs appointment. What kind of tips do you have for us? Please comment and let us know what you do to be ready for those appointments.

image1 (1)We CAN do this!!

We WILL do this!!

Now GO!!

Gentle Hugs,

Jill

30 minutes…..

30 minutes…..

 

IMG_1654Ugh, I hate it. It’s a never ending cycle. You feel good (read.. pain is somewhat bearable). You get up. You go out. You live life. You come home. You feel like you are going to die because the pain is so bad. Is it any wonder that people with fibromyalgia suffer from such debilitating depression and anxiety? How do you decide? Stay in your prison in hopes of keeping the pain at a minimum for a few hours or actually got out and try to enjoy yourself while experiencing a high level of pain or anticipating the high level of pain to come? It makes me think of one of my favorite quotes, “I’d rather have 30 minutes of wonderful than a lifetime of nothing special.” Julia Roberts as Shelby in Steel Magnolias. I think most Spoonies agree with me. We miss out on SOOO much that if we get any time we feel halfway decent we are going to try and pack as much wonderful in as we can. Don’t let that make you doubt us when we are laying on the couch or bed later. Don’t think… “Well yesterday you were doing such and such so you must not be feeling TOO bad.” Believe me… if yesterday we were doing anything… then today we are feeling bad. That’s how it works. IMG_1658Please don’t begrudge us those moments of wonderful if we choose to use our 30 minutes this week to do something fun instead of something routine like laundry. If YOU only got 30 minutes out of bed a week would you want to spend it on laundry? I think not. And Spoonies.. don’t feel guilty if you spend your 30 minutes doing something fun. Something fulfilling. Something wonderful. It is good for your mental health. It is good for your depression. Your mood. Your heart and soul. Now if you absolutely LOVE laundry. Go for it. Lol, otherwise….play with the kids, go shopping, go kayaking, go do what your heart desires. Just go.

image1 (1)

We CAN do this!!

We WILL do this!!

Now GO!!

Gentle Hugs,

Jill

I am honored!

I am honored!

Lee Good from The Fibroblogger Directory has invited me to take part in her site by adding my blog to her directory. To me this means that I am getting the attention of people who are making a difference because maybe possible I am making a difference or they see in me the possibility to make a difference. The link to the Fibroblogger Directory is on the home page in the right hand margin. It looks like this:

Fibro Blogger Directory badge

Please visit and check out some of the other wonderful blogs on the site and then be sure and comment and let Lee know how much we appreciate her hard work gathering up these quality fibromyalgia sites for us to reference. Don’t forget to follow her page while you are there!!

Talk Soon!

image1 (1)

We CAN do this!!

We WILL do this!!

Now GO!!

Gentle Hugs,

Jill

Catching Up…

Catching Up…

Hey Everybody,

I hope you are all hanging in there and no one got blown away by the hurricane or are going to have to wear flippers to breakfast instead of slippers for a while. Mother Nature can really throw us for a loop sometimes. We were on the outskirts of it here in Tennessee and only got a little bit of wind and a few showers. I got a few muscle cramps and some soreness but all in all not too bad. I think the new higher dose of Topamax is really helping with my pain levels. I AM having a lot of numbness and tingling in my fingers though.

It is the middle of September here and we are still having summer weather. Not that I am complaining. Even though fall is my favorite season, it means the start of pain season for me. We have a saying here in East TN and I have probably told you guys this before. I am going to tell you again anyway. IF you dont like the weather, then just wait 15 minutes. The reason we say this is that we live in a valley and thus we have a lot of fronts that come in and our weather is crazy!! It also means a lot of pain for me. I mean A LOT. Last Feb-April I spent what I think was at least 8 weeks in bed. I know I missed 3 months at the gym. And it wasnt just 8 weeks in bed watching tv. It was 8 weeks in bed crying out in pain and wanting it to just stop. After it was all over with, I decided I would move once my son graduated high school. I would probably go to Florida. Because I love the beach of course. LOL. But now that the painful time of year is fast approaching, I am pretty sure that I cannot take it again. I dont think I can do it. So, I am thinking of moving early. Anyone in Florida already and need a roommate? Cheap? LOL

Well, last week I had my disability hearing. I applied for disability in March of 2016 and was denied twice. That is when I got a lawyer and she requested a hearing in front of a judge. I will say that it was not as bad as I was afraid of. I will also say that I am going to do a separate post that is a rant about how we as a country treat our disabled and low-income residents. Just consider yourselves warned. Anyway, I will spare you all the gory details, but my lawyer thinks I did well answering the Judges questions, but she has no idea which way she will decide. Also, now I must wait 1-2 months for the decision and then another 1-2 for the first check if approved and who knows when I would get the backpay. This whole ordeal has been very hard on me and my whole family. Mentally, emotionally, and financially. I know that a lot of you have had to go through the same thing. But what do we do? We stay strong! We fight! We keep on keeping on! Thats right! Because we are WARRIORS!! We are SPOONIES!

image1 (1)

We CAN do this!!

We WILL do this!!

Now GO!!

Gentle Hugs,

Jill

Just. Can’t. Even.

Just. Can’t. Even.

Guys, there has been so much going on and the big thing this week is that my disability hearing is on Wednesday. I am so nervous. Not sleeping well. My lawyer said this judge is really nice but I am having nightmares of someone worse than Judge Judy or…… I don’t even know a judge this bad….. yelling and accusing me of not really being sick. Even throwing the gavel at me. Lol Anyway, so now I am depressed, well I have been that for a while now, but anxious and paralyzed. Like I can’t do ANYTHING productive. Do you know what I mean? Have you ever felt that way? We need groceries. I need to take a dress back to Ross… yes, Ross! It is a sad day when I don’t wanna go to Ross! You know…. just.. STUFF!! Oh! And yesterday was my birthday. 🎂 I actually had a great day. Anyway….I am going to go stare at my to-do list some more. Wish me luck!

Say What?

Say What?

I cannot believe it has been 3 months since my last post!! How crazy is that? I am so sorry guys. I am sure you have just been dying to know what has been going on in my sad little life and have so many questions about fibro and other chronic illnesses. I know you have just missed out on tons of information that I could have imparted from my little brain to your little brains….. LOL.. who am I kidding…. do you even remember me? LOL, I am the goofy girl….errr…woman whose body decided it was done working properly and is now giving her a fit.

image1 (1)

Well, I am back. I have been very busy the last few months trying to take a little better care of me which mainly translated into lots of naps. Therapy-wise, I did some massage therapy/myofascial release, dry needling, CBD oil, aquatherapy, and yoga. I wish I could tell you that one of them cured me but I am still just as broken as before. I believe that all of them helped with certain aspects of my pain at least a little bit. On the medical front, I tried a spinal block , and added Topomax and Flexaril to my daily drug regimen. I will never, EVER do a spinal block again. I think the Topomax is actually helping with the pain but is killing my brain cells even faster than the Lyrica. Mental Health-wise, I have been really struggling with my depression. REALLY struggling. Thank goodness I have an awesome therapist who is willing to talk to me on the phone or by text almost anytime day or night when I need it. She has really gotten me through some tough times. The pain and the loneliness have really gotten to me. I am hanging in there though.

IMG_0748

Um…on the personal front….I changed my hairstyle for the first time in 20-something years and colored it for the first time EVER and love it!! The whole point of going to the hair salon was to try and minimize hair maintenance tho so I wish I had not let myself get talked into the highlights. I tried online dating as an attempt to cure the loneliness……HATED it. More to come on that front.

ghdfghfghfghfghdfghdfghUm, I am considering moving to Florida before the East Tennessee winter and spring weather take a toll on my body again. I hate to leave my family and home but I just don’t think I can take another year. Here in ETN there is a saying, “If you don’t like the weather, just wait 15 minutes.” The weather is seriously bipolar. Especially in the spring. There are fronts coming and going all of the time and it kills my body every time the weather changes. I think the environment of the beach will be soothing to my soul too. Have any of you relocated to be in a better climate for your chronic illness?

siesta_beach_2

Hmmmm, what else? ….oh, disability hearing is coming up next week. Hoping the stress doesn’t put me into a flare before then. As I am sure most of you can relate, I HAVE to get this disability. Have to. So… I am sure that I am leaving out some important information but that is at least the important highlights of my last 3 months. Now we can get back to the business of the blog. Please comment and let me know what subjects you would like to hear more about or would like me to research for you. As long as it has nothing to do with politics we are good. Hope you guys are doing well and had an awesome summer. I made it to the pool with my bestie and the youngest several times and even managed to kayak about 3 or 4 times with someone to help do the lifting of the boat and getting me in and out.. lol. Loads of fun. Ok guys, talk to you soon!!

IMG_1442

It’s my life and I’ll cry if I want to…

It’s my life and I’ll cry if I want to…

IMG_9397 (1)Today has just been one of those days where I can’t seem to summon the motivation or energy to do anything.

I am SO tired of this bed. SO tired of this room. SO tired of this house. I need to get out and have an adventure. SO badly. I was not made for this life.

I WANT to cry. I WANT to yell. I WANT to throw things. I WANT to know why. I WANT the pain to stop. I WANT to shower. I WANT to go kayaking. I WANT to go swimming. I WANT to go fishing. I WANT to do SOMETHING. I WANT to do ANYTHING frankly.

 

I NEED people. I NEED stimulation. I NEED to be productive. I NEED to be useful. I NEED to be out in nature. I NEED someone who understands. I NEED support. I NEED someone to hold me and tell me everything will be okay.

I CAN keep the faith. I CAN reach out to others. I CAN give my body what it needs. I CAN keep trying. I CAN do what the doctors tell me.

I CAN try again tomorrow.

I Have a Confession to Make

I Have a Confession to Make

I fell off the wagon…

There… I said it… No taking it back now… Unless I decide not to publish this post… 😉

After 5 months, 1 week, 3 days, 16 hours, 12 minutes, and 32 seconds… I gave into temptation… There is no taking it back now… I wish there were… I really do… I mean, honestly… It was heaven and I would do it again in a heartbeat….. but…. I hate the example it gives my boys… and I am better off without it… I don’t need to be putting that poison in my body… even if I couldn’t tell a difference in my pain level without it…

So, today, I start again, I have now been 17 hours without it again… and I want it pretty badly.. but I can dot this… I think I can…I think I can… I think I can.

My Other Invisible Illness…

My Other Invisible Illness…

img_8989.png

I talk a lot about fibromyalgia but I also have narcolepsy. The picture of me sleeping is what the last 2 weeks have looked like. I cannot fill my marginally helpful stimulant until the day it runs out. Often the pharmacy is out, prompting them to have to order it and me to be out for a day up to a week. Well this time my prescription had run out, and although I had been trying to reach the Drs office for a few days to go ahead and call in a new prescription, it took quite some time to reach them.

img_8992-e1525965108398.png

Now, some of it was my fault for waiting too long but a lot is the office. But most of it was the Drs office fault. I don’t have a lot of choice as far as Sleep specialists and by and large really like this guy but his office is not efficiently run. They have multiple independent offices and it is hard to get in contact with them. Anyway, I have an appointment for tomorrow and still no prescription. Ugh. I have slept an average of 16-21 hours a day since Thurs before last.

img_8990.png

I sleep for hours at a time and still wake feeling like I haven’t slept in a week. I want to stomp my feet and yell that it isn’t fair at the top of my lungs. I want to cry. I want to be angry. I hate feeling horrible. I hate missing out on life. I hate being so helpless. I hate what my life has become. I hate being so worthless. I hate being so useless. I hate being a burden. I hate that my kids take care of me now. I hate Narcolepsy. But….. that does no good. It is a waste of the little bit of energy that I have. It is a waste of the time I have to be awake. It is a waste….

IMG_8993