Tuesday, May 3, 2016

Quickie 7 Series

So, the new chair they fitted me for is a Quickie 7 series.  It has the most amazing back rest, and while being fitted for the chair, the OT was amazed that I've been in my current chair for so long, especially considering I've been sitting all wrong. This current chair has me hunched over, and my hips and back are curving inward at a very unhealthy level. This explains the curve in my lumbar that was found in my last MRI. That is permanent, and was caused by sitting wrong in a wheelchair that was never fitted properly for me. *sad face*

I am praying with every fiber of my being that this new chair goes through because now that I know how terrible my posture has been in the chair I use all day, every day, just sitting in it gives me terrible anxiety and I can't wait to be sitting in a chair that will alleviate a lot of pain and issues. Besides my posture, the new chair is lighter, more narrow, and much easier to get in and out of my car. Life in general will be much easier to live with the new chair. I sure hope Medicare approves at least most of it. I will find a way to scrape together the rest.

She said it can take up to 3 months to find out, but at least it's in the works.

Now, the next step is to get into Physical Therapy, but that will have to wait until my daughter has day care situated for my boy. I will still be crippled up and in need of PT until then.

Monday, May 2, 2016

I'm Back

I know that I went dark for a little while, and I guess it was just a much needed break. My visit to U of M ended in disappointment, and I think I just became very discouraged. I received a phone call from the neurologist who examined me, and in his words he is "convinced I had some sort of myelitis and this is the unfortunate aftermath". Well, that's kind of obvious and doesn't really help me figure out a solution now does it?

I know I suffered some sort of myelitis. That was not why I was sent all the way to U of M. I was sent there to try to get to the bottom of why things have changed so drastically, and why my legs are making my life a living hell. He did the blood tests, which all came back normal or negative, and he examined my reflexes and level of nerve function, etc, but I guess that's the end of the line. He's not going to go any further with trying to find the cause. He suggested Botox injections and referred me to Physiatry down there, but this is something I can accomplish here at home without all the traveling and stress, so I am not pursuing that avenue.

We are, however, pursuing it here at home. I have Botox injections for my inner thighs and hamstrings scheduled for July 22. This was the soonest we could get it done since it has to be submitted to insurance first, hopefully approved, and then ordered. I am very hopeful that this provides enough relief that I am able to finally get my legs stretched out and a little more mobile and flexible. The fentanyl patch has done wonders for my every day mobility and movement, but my legs still refuse to go completely straight and I am still unable to stand.

I have an appointment today with Occupational Therapy to be measured for a new wheelchair. Hopefully, Medicare will pay for a new one in full, but I am not convinced. Medicare doesn't even pay for my medical bills in full. I am now facing thousands of dollars of bills piling up that are my responsibility, which brings me to my GoFundMe page.

Originally, I created my GoFundMe page for the expenses of driving to, and staying in, Minneapolis for what was supposed to be a lengthy search into what is ailing me. Now that it seems that has hit a dead end, the leftover funds will not go to waste. They will be applied to the medical bills that are currently looming over my head, and also to possibly my share of a new wheelchair. The wheelchair I am in serves its purpose no doubt, but it has seen better days. It's also quite heavy, so a newer, lighter version of a chair would go a long way to lessening the damage being done to my upper body every time I have to lift it in and out of my car.

I turned donations off for a while after I found out U of M was pretty much a dead end, but I have since turned them back on now that I have all the other expenses here at home piling up. I will not be actively sharing or pursuing donations as much as I was, since there was still around $500 that went unused from previous donations, and will now be applied to my previously mentioned bills, but the page is there and donations back on for whomever comes across it and decides to be generous.

So, I have not given up, but the path has changed a bit. Things are staying here at home, which is nice. I would still love to get into Mayo and have them take a stab at my mysterious case, but for now I am happy with where things are and are headed.

Never Give Up

Sunday, March 27, 2016

Happy Easter, Peeps

Easter Sunday Thought Of The Week: Losing My Faith

After getting sick, I wondered how there could be a God that would allow something like this to happen to me. A single mother who has always tried to be good, and do good. A person who was trying so hard to be healthy and change her life for the better, and for the better of her daughter.

It's hard to continue to believe there is a God, or even a higher power, after you suffer such horrible tragedies and nothing seems to get better, only worse. I fell into depressions and simply lost my faith and my willingness to believe there was any good left in the world.

Drinking for many years and hanging with the wrong crowd only compounded my lack of faith. I really had no reason to believe in a God or anything greater than me that could be capable of doing any good. It was easier just to give up hope than to struggle with the why. The words "Godless bunch" really rang true to me back in those days. It seems many people who go through terrible tragedies lose their faith with God and turn to a darker side.

Even through my most recent struggles, I have been trying to get back to having some kind of faith. What that faith lies in, I am still unsure, but I do know there is something powerful that can help steer us back to a place of good, and a place of healing. It's important to hang on to something that gives a person hope that things will get better. As difficult as that can be to do, I do feel it's extremely important.

This post has been in my drafts for a while, and today I felt was the perfect day to finish it and get it published. I am still unsure what I truly believe in, and on days like today I really just go through the motions, but I can respect the story, and I can respect others' faith in God and in Jesus. Where my faith lies remains a mystery, but I am getting back to a place of faith and that's good.

Wednesday, March 23, 2016

My First Appointment With U of M

My first appointment at U of M went well. It was short and sweet. The facility is amazing! The staff and doctors are amazing. The neurologist had a lot of insight and ideas into what he believes is going on with my body, and has been going on with my body since my first episode in 1997 that left me with residual weakness in my lower half.

U of M Health Clinics and Surgery Center
Heading in to Minneapolis for my first appointment with U of M
I had to do quite a bit of searching to find a hotel with beds that were low enough for me to get in and out of unassisted. Although my daughter is a skilled CNA and could lift me in and out of bed no problem, I see no need to put her through that when I can simply find a hotel with low enough beds. Not to mention I get up several times a night to use the bathroom and I would never in a million years wake her that many times to do so.

The hotel I did find was awesome! The Aloft in downtown Minneapolis was only $93.00 for a double queen bed wheelchair accessible room, and it was ACTUALLY ACCESSIBLE! I end up having issues with so-called "accessible" rooms when I get in there and the bathroom door isn't wide enough, or it opens into the bathroom so I can go in and close the door at the same time. But, this hotel had a sliding barn door style door on the bathroom with a full length mirror and a HUGE shower with fold down seats and a removable shower head. The beds are platform beds that were the perfect height for me. All in all I was very happy with everything about this hotel; the price, the accessibility, the staff, the location. I give it an A+ for sure!

low beds platform beds wheelchair accessible
Aloft Hotel, Downtown Minneapolis - yay for low platform beds
We even had a nice view of the new stadium! The sun was shining bright as soon as we walked in, and I really needed that positive and bright atmosphere to brighten my spirits and really make me feel welcome and safe the night before my appointment.

Minneapolis minnesota new stadium
We even had a view of the new stadium
My grandson loved the bed, and he even got a bath in the bathroom sink! It was so much fun hanging out with my daughter and grandson. We laughed and enjoyed the quiet, bonding time. We haven't had much of that since the little guy was born. My daughter has been busy with him, and work, and all her other grown-up responsibilities, and I have been busy with my health issues and doctor's appointments, etc. It was just what we needed amidst all of our daily life responsibilities. I even got a bit of a break from the constant pain that consumes my every waking moment. The pain is always there, but every now and then when I'm enjoying myself, I get distracted enough that it's not center stage quite as much.
Aloft hotel grandson approved
Grandbaby approves!

Grama shannon's grandson and daughter smiling and laughing
My loves enjoying the peaceful time.

Had a bath in the sink! I feel great!
There was a sushi restaurant across the street from our hotel, and since it was on the second floor of the building, we were concerned about my accessibility (as usual - that's always a factor), so my daughter just went over and got us some dinner and brought it back - her treat. She's so good to me I can't even put it in words, because there aren't words great enough to match her greatness.

Yummy Tuna Sashimi!

Mom and son quality time :)
The following morning we left plenty early so we could find the place and get parked and inside with plenty of time to spare. All went well and everything went off without a hitch. Next time, however, I will do the valet parking like they suggested. It's just too busy and too much hassle when it doesn't cost any more to let them do it than if you do it yourself.
Sunrise in Minneapolis
u of m health clinic and surgery center
U of M here I am

It's nice to actually look forward to revisiting a medical facility. I will be going back many, many times. I hope that each time is as pleasant as the first.

My final step in the process was to leave 7 vials of my blood behind for testing. I have yet to receive the results, but let's hope they are good. None of the tests are anything I want to come back positive, except the copper levels. He said occasionally copper levels can be too low and that can cause problems such as mine. So, that one can be positive if it wants, because that's an easy fix!

Never Give Up

Saturday, March 19, 2016

Thought Of The Week: Being Disabled Sucks

For those who have been lucky enough to never have had to experience what it's like to be disabled, it's more than just an inconvenience. It can be terrifying at times. Imagine getting ready to go on a trip, but every hotel you call has beds that are too high for you to climb into, and there are no ladders or any way for you to get into them. That's the only way I know how to describe the feeling I just experienced. Add to that, it's not as if I can just sleep anywhere. My body is so racked with pain and so bent and tight, that the only way I can almost sleep is on my side with a pillow between my knees and of course my legs bent (because they don't go straight). I'm also 6' tall so I don't really fit just anywhere.

Because I am unable to stand up at all, I need a bed that's low enough that I can just transfer over from my wheelchair. In other words, a platform bed. All the hotels near U of M that offer discounts to patients don't have them. If I could still stand up, this wouldn't be an issue, and I could save a lot of money by booking with a hotel that offers discounts, but since I can't stand up, and can barely even transfer from my chair to any other surface, I had to find a hotel that offers platform beds and pay the price. It was either that or stay in a cheap, seedy motel really far away from U of M. Because of U of M's location, everything is expensive! How in the world do they expect someone like me to be able to afford this! Especially if I have to go down there multiple times! Thank God for my GoFundMe page and all my amazing supporters who have donated so far! Bless you all! I knew this was going to be a big expense, but until I really started making the plans and calling around for an accessible room (and bed), I had no idea what I was truly facing.

These are the kinds of things someone like me faces every single minute of every day. If it's not the bed issue, it's the bathroom doors aren't wide enough for my chair (yes, even the "accessible" rooms). Or, the doors are wide enough, but they open IN to the bathroom so once I'm in there, there's not enough room to close the door because my chair is in the way. People who have never had to experience being in a wheelchair and being confined to one, don't really understand all the tiny issues that become huge issues for us. Even my friends and family say to me, "I would have never thought of that -- it's amazing the things we take for granted." How true. My life is filled with nothing but obstacles; from too narrow doorways to rugs on the floor that my casters get caught up in, to things on the floor that I have to bend over and pick up because it's not like I can just step over them. It's a constant battle to just get from point A to B.

So, I found a hotel with platform beds, and it's only about a mile from U of M. It's actually a very nice hotel, and wasn't too insanely expensive, thank God. I am looking forward to relaxing there Sunday night before my appointment on Monday morning. I guess if I have to go through all of this, at least I can stay in a nice hotel and enjoy some small luxuries as best I can. I'll just eat less.

Never Give Up

Friday, March 18, 2016

Road Trip

So, I'll be leaving Sunday morning to head to Minneapolis and get settled in at a hotel. My appointment at University of Minnesota Medical Center is at 8:55 Monday morning. I'm excited, scared, frustrated, and looking forward to the drive, but not looking forward to the drive - if that makes any sense. I think it will be nice to get a little road trip in and get away for a day or two, but it's not as if I'm going to do anything fun. I will just enjoy whatever I can and keep my hopes up that they will treat me well and we are on the road to figuring something out in regards to my weird, angry body.

I will take pictures and of course update a lot!

Wednesday, March 16, 2016

Chronic Illness: How Quickly Things Change

My life used to revolve around work, exercise, and whatever little bit of social life I had.  Now it revolves around doctors appointments, tests, medicine refills, and constant worry about what the future holds. A person can go through life day after day doing the same routine, never knowing that one day it can all change and become a very different kind of routine. The kind of routine some people are lucky enough to never experience.

I spend my days scheduling appointments, collaborating my schedule with my daughter's so that she can either take off of work or find other child care, and keeping track of when was the last time I took what pill and when do I need to take another one. I'm almost always tired, I can't drink alcohol, and my social life has come to a near screeching halt. It's tough to muster the energy to do anything beyond care for yourself when your body is nothing but constant work. After a day of fighting pain, with every movement hurting so badly you dread just putting on your shoes, all a person wants to do is lay down in bed and stay there. Being social and having "fun" is a thing of the past. I do my best, but it's slowly slipping between my fingers and just another aspect of my old life falling away.

I will not let this become my normal. This is a temporary mountain I must climb, as I've done before, and will do again. At least this time I'm one step ahead by being more educated and having the strength I didn't know I had before. This time it's going to happen on my terms.

I just want my life back, but the unfortunate truth is I can't have that until I get my body back. The biggest question haunting me day after day is; will I ever get it back? I wish I could have been one of the lucky ones who never really had much more than a bad flu or a broken bone, but I'm one of the "lucky" ones who's had several different medical conditions that are not just an annoyance, but a complete life changer. I've learned to accept that, and in fact I'm starting to embrace it as possibly that's what I was put here to do. Maybe my purpose in life is to suffer these ills so that others don't have to in the future. Or, at least that's what I tell myself so I don't go completely insane constantly wondering "why me?".

All I can do is keep telling myself, and believing, that I will persevere. I press on - going to the appointments, taking the medications, doing the research, trying my hardest to do every tiny thing physically possible to keep my lower half moving and flexible despite its constant fight to cease up and be useless. I will not let that happen. I will fight. I will never give up.

Tuesday, March 15, 2016

Guillain-Barre, I Hate You

I've been struggling with writing this today because I'm so sad and frustrated. The last MRI found nothing of significance to cause what's happening to me. There is mild degeneration, mild arthritis, etc, but no spinal chord issues and no tumors or lesions. I mean, this is obviously great news, but for me it's just more questions. Without something staring us in the face and saying "hi, I'm the reason you're in constant pain and your legs are tight and miserable", we are left with nothing but more questions, and more tests, and I am left frustrated and sad. I can't think of another word for how I'm feeling except sad.

So, U of M here we come. You've got your work cut out for you. Mayo may still be an option, also. I spoke with my doctor today, and he agrees I need to write a detailed letter explaining the whole story. Mayo is only seeing a very small picture of a much larger story that spans nearly 18 years now, and in my doctor's own words "this is not an easy case". I am going to write that letter, and I am also going to ask my doctor if he would be willing to write one as well. Since my records from my initial illness are long gone, it's up to me to fill in the blanks that Mayo has not yet seen.

So, here I am, back to square one. Thankfully, I officially fired my old pain doctor and now have my primary physician handling my pain management. He supplied me with a Fentanyl patch today, and so far it's making a world of difference! The only tweak that will need to be made is a stronger dose. He gave me the lowest dose just to be on the safe side, and I agreed that was the right way to go, but I can already tell I will be fine with a stronger dose, and I am definitely going to need it. The benefits of the patch are too numerous to count; starting with, I actually felt like I might be able to stand up today. I tried, but things are still too bent and too tight, but the urge was there, and I feel after having the patch a bit longer, and maybe even having to wait for a stronger dose, I might be able to start standing again. If I can do that, I can hopefully get these damn legs working better and not just being huge pains (literally).

Monday, March 14, 2016

On My Way To Nap In The Tube

Just about to go under anesthesia for my lumbar MRI.

It went well, and I will get results tomorrow!

Sunday, March 13, 2016

Lumbar MRI

That face, right there, is what keeps me going through all of this crap with my health. There are days I get so tired of it being such a constant force, I start to feel so much anxiety and go a little crazy, and then my daughter sends me a picture like this and it all goes away, even if just for a second.

That little boy has been, and will continue to be, my savior. He has so much happiness within him, and it's so contagious! 

So, tomorrow is the MRI of my lumbar. The final section of my spine to go through the MRI. If they don't find anything tomorrow, things are going to get very complicated, as every other section, including my brain, has been clear. Knowing this is making me even more anxiety ridden than usual, and I've been blowing my daughter's phone up with all of my fears and worries, so she sent me the above picture. She bought that for my grandson, and seeing that just reminded me how true of a statement that really is, for both him and her. I love them both so much, and I make sure they feel that love constantly. That is why whatever is ailing me is going to be found, and fixed, so that I can be OK for my babies. So that I can be around for both of them and bring them the comfort and joy they deserve in their lives.

I just don't think I can handle any more bad news. I really just want this to be easy for once. I want to hear them say "we found it, and it can be removed, and you will be on your way to recovery". In my extensive experience, however, it doesn't usually go that way. In fact, it usually goes just the opposite and is the kind of news you think to yourself "wow, that would really suck to get that kind of news". 

That has been my life up til now. I can't seem to just have normal health issues. They always have to be some kind of rare disease, or turn out to be a 4 pound tumor making a home in my uterus. Fibroid tumors are very common in women, and especially in my family, but I just had to be the one with the extreme case; walking around with a tumor the size of a 17-week fetus inside my body. That gets removed, and I begin to move on with my life thinking maybe I'll go for a while now without any more serious health issues, and then this comes along. Slowly my legs get tighter and tighter until I'm no longer able to stand and then they take it all the way to I am no longer able to get them to go straight. The pain only continues to increase, and I am once again left scratching my head and thinking "what the hell did I ever do in this life to deserve such weird health issues?". 

I'm a firm believer in putting out positive energy and getting positive results, so I am trying my very hardest to do that this time as well, but it's getting to be harder and harder each time. I just keep telling myself it simply has to be OK for my daughter, and for my new grandson. They need me in their lives as much as I need them in mine. They need me to be OK. So, I will be. Even if this MRI doesn't find anything, U of M will. We will get this figured out, and I will go back to being off of drugs, as healthy as I can be, and exercising and being active and taking care of my grandson and daughter like I should be able to for a very long time. That's really my only wish. As much as I would love to walk again, I'm not even going to be greedy and ask for that. All I really want out of this most recent development is to go back to the way I was before this all came about. My legs were weak, but they were limber and didn't hurt. I had to use a wheelchair most of the time, but I could stand and I could climb stairs if I needed to, and I could walk a little with a walker if I needed to as well. I will be happy if I am blessed enough to go back to that. Just not being in pain, and my legs not being so tight and immobile will be the greatest blessing in the world to me right now. It doesn't sound like much, but with my luck (or bad luck) with my health, it seems like that's asking for the world.

Never Give Up

Saturday, March 12, 2016

A Mother's Love

Forever Is A Lie

Beautiful Love

My grandson next to his daddy's new tattoo of his initials. I love these two.

Light Of My Life

Zebra Sunset

Saturday's Thought Of The Week

I am finding it very hard to keep my head above water today. I'm feeling very overwhelmed with physical pain, and emotional pain, and it feels like whenever I'm going through some of the most difficult times in my life, there are people who insist on adding more struggle to the mix. I'm tired of getting over things. I'm tired of having things done to me that I have to get over. What if I don't want to "get over it"? What if I have reached my limit of getting over it and my tank is empty? Does anyone care about that?

People have become so much more selfish and self absorbed it's almost unbearable. There is no more sentiment to anything. Nobody creates bonds anymore, or if they do, or try, they seem to always get broken. Nothing is held sacred. I don't know what to blame, be it technology or what, but the world is becoming an unfeeling, robot-like society. It's as if it's easy to break ties because the world has become a much smaller place with the internet making us able to find someone else to fill that void within minutes. What people don't seem to understand is there will never be any real ties or real connections if this continues. How can anyone form a real and lasting bond with another human being if one, or both of them is constantly searching the vast internet for something more.

I've experienced enough pain in my 40 years that I am simply done trying. My heart has always been so big and full that I have always wanted to share it, even with the most difficult of people. My father being one of them. He's a granite statue of a man; very cold and unyielding. Not easily moved by anything or anyone, not even his own blood. For most of my life I tried over and over to show him love. I wanted him to realize that life isn't always about suffering and pain, that there are people in the world who will love you and care for you, but all that did was push him farther and farther away from me. Finally, after being hurt by him over and over and over, I just gave up. In order to preserve whatever was left in me that was good and pure, I had to let his negativity go. The problem is, I choose men who are very similar to him, and follow the same pattern of giving myself fully to try to "heal" them with my love. I pick men who have been hurt, and I want to love them so much that they no longer hurt. All that gets me... is hurt. When will the cycle ever end?

I can't stop being "me", but I can stop giving myself away. I think.

So many people have become so afraid to love. I don't think love is a bad thing, I think the inability to love is a bad thing. It will catch up with you in the end. I believe that at the end of your life, when you are approaching that time when you will no longer exist, the one regret people will have will be not allowing themselves to love more. Yes, a broken heart hurts, but it heals. What about all that wonderful stuff in the middle you're missing out on? What about all that potential happiness and joy that was wasted because of fear? Not me. I will never stop wanting to feel love and give love.

Never Forget

Also, never forget the ones who don't.

Wednesday, March 9, 2016

Narcotic Pain Killers And Pain Contracts

I want to first extend a huge thank you, again, to those who have donated so far!  Complete strangers and close friends alike have donated and shared my page, and I could not be more grateful for all of it, and all of you!  Thanks to you I will be able to get to Minneapolis and back and stay in a hotel and the like.  God bless.

As at the very least the tiniest thank you in return, I would like to offer a little bit of information that I was not aware of in hopes that maybe I can help someone else.

Thanks to the drug addicts and drug seekers of the world, and because I have no other option but to be on daily use narcotic pain medications, I had to enter into a "pain contract" with my pain doctor (whom I have never cared for from the very first appointment).  I was under the impression that contract meant I was stuck with that particular doctor and could not switch doctors without some kind of huge hassle and possibly trouble getting my pain medication, etc. According to these contracts, you can not get your medication from different pharmacies, or try to go to different doctors to be prescribed more or different medication. You also agree to being drug tested whenever they see fit in order to prove that all you are taking are the medications being prescribed to you. There's more, but I don't remember it all, I just know I signed it because I have nothing to hide, I'm legitimately in a lot of pain, and I'll do whatever they need me to do so I can get relief from that pain; including be treated basically like a criminal during the pee test that is required. It's the most humiliating thing I've ever had to do, and it's such an outrage that us innocents have to be subjected to it in order to get what we deserve. Nonetheless, it's part of the process, and I do what is asked.

However, I honestly do not know how this doctor is still in practice, because he's horrible. His bedside manner is non-existent, he does NOT listen to a word I say, nor does he seem to genuinely care about my level of pain and the fact that it limits my daily activities to basically zero.  Even under recommendation from my primary doctor who feels I should be on a fentanyl patch, this doctor refuses to even increase my dosage to any real level so I can get real relief. I have been suffering for months in excruciating pain, constantly teetering on whether or not to call an ambulance and go to the ER, but thinking maybe my next appointment he would actually, finally give me some real and substantial relief, all the while he's been keeping his "know-it-all" stance and only very gradually increasing my dosage over the course of weeks and months. (personally, I believe he's been doing this to keep me having to return to his office because he makes $230 each office visit and since he's leaving, I think he wanted to make as much off of me that he could! If he gave me substantial relief, I would have no reason to return for office visits).

My last appointment with my primary, he personally said right to my face that he felt I should be on a fentanyl patch (as did the Nurse Practitioner doing her residency with him). At my appointment with the pain doctor today he refused to prescribe the patch, and only increased my current pain meds by 2.5 mg, even though he is fully aware my pain level has been between a 7 and a 9 for literally months and I have not been able to sleep or even move without pain. On top of all of this, he personally witnessed the pain and limited movement in my legs when he made me move them for a brief examination. As I scream out in pain, he doesn't even notice.

The good news is; you can transfer your pain contract to any doctor who is allowed to prescribe narcotic pain medication, and they will even do it all for you with a simple office visit! I emailed my doctor while sitting in the pain doctor's office, and asked if it was possible to transfer my contract to him. He replied with "I'd be glad to".  This entire time I've been suffering under substandard care, I could have been getting real, genuine care from a doctor I actually trust, and who knows me and trusts me and realizes what kind of pain I am actually in. Had I been aware of this fact months ago, I would have never allowed this other doctor to make one more penny off of my insurance because he simply does not deserve it.  He does not do his job. I don't even care about whether or not I get a fentanyl patch, I care about receiving more than the most limited dosage increase to pain meds that I keep telling this doctor are not even close to enough. On the questionnaire I'm required to fill out at the beginning of every visit, it asks how much of your pain your current regimen is managing and I circled 0-25%, but apparently I was lying?

If you ever find yourself in a similar situation, know that pain contracts can be transferred and you can receive better care. Don't be afraid to fire a doctor who is not actually caring for you. Be proactive in your own health care, it's a must. You have to speak up for yourself and take a stand in making sure you are receiving the care you deserve. Never let any doctor make you feel like you don't deserve to not live in pain. This doctor made me feel like he knows better than I do, and that I should just listen to him and that's that. I know my body, I know the level of pain I am suffering with, I know that everyone's chemistry is very different and certain medicines affect everyone differently. I know that I will NEVER allow anyone to tell me they know more than I do when it comes to what's going on inside my own body and mind. If I'm in excruciating pain to the point that I dread putting on my shoes or even going to the bathroom, I damn well better have a doctor who's going to hear that and do whatever he can to make my life more comfortable until whatever is wrong with me can be figured out and either fixed or properly managed.

I am so glad I know this now, and I have fired the pain doctor and will finally be getting proper care from my primary whom actually cares for me in a very genuine way. Thank God! If you are ever in a similar situation, just ask questions. Do your research. Don't be afraid to speak up and take charge. It's your body, it's your health, and it's your money paying for the insurance they are billing!

Never Give Up

Tuesday, March 8, 2016

Amazon.com's Horrible Business Practices

Several times over the past few months (including over Christmas) I shopped on Amazon.com, as millions of others do, and was subsequently charged TWICE for items I purchased. The first time this happened during Christmas time, and because of the double charge on so many items, when it came time for the items to ship, the second charge was declined and therefore the items never shipped and my Christmas gifts never made it (even though I had already been charged once when I made the purchase and the money was there) -- making me look like an asshole. That first charge is an "authorization hold" to make sure there is enough money on the card you are using for the purchase. After the seller prepares to ship the item, your card will then be charged a second time, making you, the buyer, wait for your money from the first "authorization hold" to be released back to you. Hmmm... how, in any way, shape, or form, is this a way to do business? If I buy $200 worth of items, WHY should I then be charged $400 and have to wait 3-10 days (or even longer) to get my $200 back? Not everyone can afford to do that, especially not me! So, unless I'm rich and have tons of money in the bank, I guess I won't be shopping on Amazon.com anymore!

Charged twice. 3 days apart. Why is this necessary? And, before the $34.19 purchase ships, they will charge me for it again. Forcing me to wait days to get my $51.78 back! That's a LOT of food and gas I'll be missing out on during that time!

It seems to me that the seller is the one who should have to wait for the first charge to clear, since the one who wants our business is, after all, the seller!

Every time I've made an issue about this, Amazon.com simply tells me that this is how payments are processed. OK, well, I am sure I am not the only person who will say that when I go shop somewhere else, and might have to pay a little bit more, but am not charged double and forced to be without much-needed funds for days and days, that this is just how I prefer to shop so that I am only charged once.

Since Amazon.com does not seem to care about the little guy (me), I will make it my business to care about everyone like me and make a very large issue about this. I can promise that tons of people are going to care that someone like me, a disabled single mother with very little money to begin with, is not being taken seriously by some giant company who doesn't think I matter. If Amazon.com doesn't think the little guy can reach out to millions of other customers, and potential customers, and make them look like the assholes that they are for not fixing this issue, then Amazon.com is about to realize just how wrong they are for that assumption!

*I realize I currently have ads running on my blog for Amazon.com. I plan to leave the ads running and continue to be an affiliate for Amazon.com to give them a chance to resolve this issue and change the way they process their payments. If, however, something is not done about this, I will be removing them, and continuing my campaign of smearing their name all over the internet.

Friday, March 4, 2016

Finally Getting Somewhere

Unable to stand the pain in my hips any longer, I finally made an appointment with my primary care physician on March 1. He is an amazing, and very caring doctor. He is also my daughter's physician and delivered my grandson. I wanted to address the issue of my lumbar not being included in the MRI back in September that my neurologist ordered. I felt it was very odd (to say the least) that since the pain began in my hips, and has continued to get worse throughout my hips, that she would not have included that section in an MRI that proved to be very difficult to accomplish. The first attempt was no good because my legs will not go straight, and began spasming as soon as I was in the machine and then I had a subsequent panic attack. I was then referred to an open MRI, where once again the images were blurry because of the spasms that I can not control, nor can any medication we've tried, and I was claustrophobic even in the open machine. So, finally, I was put under anesthesia to get the MRI of my thoracic vertebrae which turned out to be clean - aside from some normal degeneration.

Even the technicians preparing me for the MRI were a little baffled that my lumbar was not being included. Now, it has been months that have passed, all of which I have suffered in excruciating pain, lost night after night of sleep, struggled with getting any kind of substantial pain relief, and I am finally heading to an MRI of my lumbar section on March 14, all thanks to my primary care physician who listened, and agreed with me, and took the time to really care.

Not only did he put in the order for the lumbar MRI, but he also gave me a cortisone shot in my left hip, which is the hip that makes me want to just jump in front of a train it hurts so bad, and I do believe he put in a recommendation to my pain doctor for the Fentanyl patch. In one visit, he did what three doctors over the course of several months were too negligent to accomplish.

So, now I am looking forward to what the MRI on March 14 will show. Before that I have an appointment with my pain doctor (whom I loathe) on March 8, where I will find out if in fact my primary put in an order for the Fentanyl patch. That will be substantial pain relief that I should have had this entire time. After the MRI on the 14th, I then head down to Minneapolis on March 20 to stay the night and go to a 9:00 am appointment with U of M for further care. It's such a shame I have to go 7 hours away from my home to get the proper care, but I am looking forward to letting these doctors get their hands and minds on my case and hopefully make some real progress in making me well.

Sunday, February 28, 2016

Cinnamon Apple Cider Detox Drink

I found this post has suddenly been getting a lot of views lately, so I decided to repost it and bring it up to the forefront.  It's coming into Spring, not Fall, obviously, and this is also a time when I start hitting the trail and really getting into outdoor cardio exercise. This drink really is fabulous! I've also added a little Peach Schnapps for a fun drink now and then!

[original post: August 24, 2013]

Since I've been trying to get healthier and lose more weight before my surgery, I've been perusing Pinterest a lot searching for good low cal or no cal detox drinks.  I found a Pin for a Zero Calorie Detox drink that called for slicing an apple then adding a cinnamon stick to water and putting it in the refrigerator at least over night.  It didn't seem like that method would release a whole lot of flavor, or nutrients, from either source, so I devised my own method and created my own drink. 

Not only did this make my whole apartment smell absolutely heavenly, but it turned out amazingly delicious!  It's a great drink for any time of year, but even more special now that Fall is right around the corner.  If you like apple cider, or apple juice, you're going to love this.  It actually kind of tastes like a McDonalds Apple Pie in a glass!  (without all the fat and calories, of course!)


1 Apple (any choice - I used a Fuji Apple)
1 Large Whole Cinnamon Stick
1 Tablespoon Unsulphured Molasses
1/4 - 1/2 cup Raw Unfiltered Organic Apple Cider Vinegar
Stevia Sweetener to taste (the kind for baking)

I sliced and peeled my apple. Then in a medium sized saucepan I added about 4 -5 cups of water, the cinnamon stick, and molasses.  Bring the water to a boil and boil for just a minute or two, then reduce heat to a simmer, cover and let simmer for at least an hour. You really want the apples to release their goodness.

After it's done simmering and you've allowed it to cool, strain the liquid into a pitcher and refrigerate overnight (this process might not be necessary, but it just happened I made this at night, so that's what I did). The next morning I added the apple cider vinegar and about 3 tablespoons of Stevia sweetener (the kind that measures just like sugar).

Pour over ice and enjoy! I drink a glass every morning!

If you try this and want to tell me how it turned out, feel free to comment or email me.  I'd be happy to know someone else enjoys it as much as me.  The reason for the apple cider vinegar is that I've read it's excellent for aiding in weight loss and reducing belly fat, so I figured this would be a great way to sneak it into my diet.  I'm sure it adds the lovely cider flavor to this drink as well.

Never Give Up

Boosting Testosterone

On my ride yesterday, I was discussing with my friend the magic of testosterone.  Him being a male, he has that advantage of what I consider to be a miracle hormone.  Testosterone is like jet fuel to the human body.  Women get a surge of it for four days every month, and I can always tell when I'm getting mine. My energy level spikes, I'm in less pain than usual, I'm logical and can easily organize. It always makes me wish I had more testosterone in my body on a more regular basis. So, probably against any of my doctor's wishes, I began taking testosterone supplements. Nothing illegal, of course, but simply the natural boosters you can find at any health or nutrition store, or online where I purchase mine.  

I have tried several different kinds, and I always return to High T. It's all natural and has the greatest effect on me without any harmful side effects. I take half the recommended dose for a man, so 1 pill per day. It truly does give me more energy and motivation to go to the trail or lift weights or do whatever I can physically to improve my body and mind.

Obviously, if you plan to take any kind of supplements you should talk to your doctor first. Some supplements, even natural ones, can have serious side effects and interactions with other prescription or non-prescription drugs you might be taking so don't chance it, speak with your doctor.

I have not taken this in a while because of all the medicines that I am currently taking, but I do plan to speak with my doctor at my next appointment to ask if it would be OK to take it again. Spring is almost here and I enjoy being outside getting exercise so much! 

Saturday, February 27, 2016

Spring Fever

Pain had to take a backseat today as I took to the trail and got some much needed exercise. Although only 45 degrees outside and pretty wet, it was a very beautiful ride with a great friend. By the end we both just felt alive. Breathing in that cold, crisp air really gives a person a nice boost of energy and just makes you feel clean and refreshed.

We are excited for more upcoming rides just like today. I appreciate the company and the distraction from my misery, and the exercise helps me to feel somewhat human again.

Wednesday, February 24, 2016


THIS is what I deal with on a minute-to-minute basis, every single day.

The irony of it is the fact this is a wheelchair accessible, dial-a-ride van for those with limited abilities or the inability to drive.  There are stickers on both sides of the van asking for courteous parking, to not park too close to the doors, to leave room for a wheelchair to get in and out.  Yet, she is parked taking up two handicapped spots, one of which is mine, and I am in a wheelchair. If I was to park in the spot on the left (which is near the roadway) then I'm infringing on the van's ability to get a passenger in or out -- so...  

First of all, people, parking on ANY hash marks is illegal, ESPECIALLY the blue ones that signify handicapped spaces!  For those of you who don't know what hash marks are, they are the diagonal lines next to a parking spot, or anything, to signal you to NOT park there - or drive there in some cases.  This person, who should know the rules, is clearly parked on them.

This is the second time today this has happened to me, and I've had it up to my eyeballs with this shit. At my doctor's office, an elderly woman parked three inches from my driver's door leaving me no room to get out even if I could walk, and I have to have my door all the way open to be able to get my chair out.  So, I had to move my car over onto the hash marks to make room for MYSELF.

I have been dealing with this inconsiderate shit for nearly 20 years now and I'm done being nice and just letting it go.  I'm going to start calling every single person out so that maybe someday these idiots will be educated enough to have a little courtesy for people who's lives are hard enough the way it is without having to be more inconvenienced and ignored.  I'm done.  This means war.

Saturday, February 20, 2016

Quote Of The Day

"You have to be completely consumed with your outward appearance to look in a mirror and not see the terrible person within"

Healing More Than Just My Body Once Again

This will be the second time in my life that I'm struggling with both a broken body, and a broken heart. They say God only gives us what we can handle, but sometimes I think He has a lot more faith in me than He should.

Apparently it's not enough to be struggling with the physical torture of a body that's constantly racked with pain and tight and twisted up, but I also have to tend to an aching heart. There truly are days when I feel like I just can't go on, but I have to believe I'm strong enough to do this once again.

The hardest part of the broken heart is knowing the awful person who broke it never deserved to have it in the first place. I wasted all of that effort and love on a person who threw me away like yesterday's trash. I think that's what hurts the most. It makes you feel stupid for not seeing the truth. For wasting all that time trying to show someone they are loved, when they never wanted your love, or deserved it. Trying to help a person who proclaimed to have been so hurt by someone before; to show them that not everyone is mean and cruel, only to become the victim of their cruelty. To lift someone up and try to show them a better life, only to have them shit all over you once they have gotten what they needed. I just can't understand it and never will. I guess because I would never do that to another person, but it always gets done to me.

It seems like whenever I get physically hurt and incapable of giving in my usual manner, people leave. It's always the people I love the most. So, I guess the problem lies within myself. I give my love away too easily. I think I see someone who's been broken like me, and I want to make them feel better no matter what it takes. I know the terrible pain that comes after someone destroys your heart (like now), and I go out of my way to try to mend it for them. I know this is a good quality and I will never feel sorrow or regret for being good. I actually feel sorry for those who took so much from me with such little regard, because in the end it is they who have lost the most. 

Reaching Out To Mayo

I have decided to spend this weekend drafting a letter to Mayo Clinic.  The medical care in Grand Forks is so sub-standard that I feel as though the files Mayo received from here were also so sub-standard that it played a large role in why I was unable to get an appointment.  I plan to write a very detailed account of my illness from beginning in 1997 to now and make them aware of everything I've tried to make Grand Forks doctors aware of with no success.  I've tried telling them numerous times that this all slowly began after my hysterectomy in 2013, but none of them seem to want to hear me.  They treat me as just another patient who doesn't know what she's talking about, but I could run circles around them with the medical knowledge I possess.  I may not have a degree, or know all the complicated medical terms, but I know my body, I know what my body has gone through, and I know how things work.  Most importantly, I know when I'm not being heard.  Half of these doctors need to lose their licenses to practice medicine, especially the physiatrist who never listens to a word I say and has me sitting here for 2 weeks in excruciating pain because of that fact.

Nothing gets accomplished by sitting idly by, and that has never been more true than when it comes to your health.  I have a lot of typing and thinking to do, and I hope that I am able to get through to the doctors at Mayo Clinic so that they will take on my case.  This will not only help me, but possibly someone in the future with similar issues.

Monday, February 15, 2016

Chronic, Excruciating Pain

Made an appointment with the pain doctor today. I can no longer tolerate the  pain, and tramadol and ibuprofen are not doing anything anymore. I don't like being drugged up, so hopefully there is a pain killer that can do the job without making me a zombie. I need relief. I need sleep, and I'm not getting either of those.

Saturday, February 13, 2016

Guillain-Barre Syndrome Awareness - Happy Valentine's Day

I thought I would share some nice pictures I came across that were taken before I got sick.  These were taken the summer before.  I miss that body.  Those long, strong legs.  Who would think that someone this healthy and fit would be sick and half dead in just a few months, and all due to some strange illness they had barely even heard of at the time.

All I want this Valentine's Day is a donation or even a share of my GoFundMe page :)

Florida Sunset

An older post, and one of the only things I miss about living in Florida; the sunsets.

Honeymoon Island, FL

Friday, February 12, 2016

U of M Minneapolis

I received the call from my neurologist's office this morning.  I did not get into Mayo Clinic like we had hoped (sad face), but they were able to get me an appointment at U of M in Minneapolis!  So, that's a great start.  I can continue to try to get into Mayo if they are unable to find any answers.  Mayo is very strict about their criteria.  They state that appointments are in such high demand with not enough resources to accommodate every appointment request that they feel I do not meet enough of their criteria for an appointment.  They don't feel there is anything more they can do that my doctors here aren't already doing (which is crazy talk, but whatever).

I feel that my doctors haven't done diddly squat!  I've had numerous appointments, but most of them are all talking about my symptoms and trying to find the right medications to get my legs loosened up enough to get an MRI.  We were unable to do that, so I finally had to be put under anesthesia to get the MRI.  The MRI was all normal, so now what?  According to my neurologist, she didn't want to do any more testing because then Mayo wouldn't accept me, but they didn't accept me anyway so I'm just frustrated.  I really wanted to get into Mayo, but I'll take the U of M as well.  It's at least a step up from where I am now.

At least rather than just getting me relief, my doctors are trying to find the reason behind all of this and hopefully make me better so I'm extremely happy about that, I just get frustrated and impatient.  Most nights I can't sleep because the pain and spasms in my legs are so bad.  Lack of sleep just makes things worse all around.  My mental, emotional and physical states take a beating when I'm sleep deprived.  I'm not even sure what we could do to get me sleeping at night.  We've tried so many different medications already and none have really done much at providing me with much relief.

I guess I'll just wait and talk to the U of M.  Wish me luck!!!

Monday, February 8, 2016

Someone To Lean On

As usual, leaning on my beautiful daughter for support.  She has turned into such an amazing woman throughout all the struggles we've been through together.  She is a caring and loving person who just wants to help people, and she's pursuing that dream.  She officially became a CNA this month and works at a psychiatric hospital, and will be returning to school to pursue a nursing degree.  I couldn't be more proud.

This photo was taken in 2010 on a trip we took that summer after I began using my walker to try to get stronger and hopefully walk again someday.  That actually went quite well for a few years until my hysterectomy in late 2013 when all of the new issues began.  I have fought and fought but whatever is causing problems now seems to keep winning.  I'm still fighting!

(Originally posted August 12, 2010)
Mom and mini

Sunday, February 7, 2016

Hello From The Other Side

I apologize for the cover photo and the title, please ignore that.  I almost didn't watch this simply because of that, and then I gave it a chance and boy was I glad I did!  I would love to see these guys get famous for this.  What an incredible cover of Adele's "Hello"!

Very nicely done.  Watch for the high kicks -- one of my favorite parts!

Hardcore, soft porn. Hello from the outside. Suck my socks.
Posted by Cristhian Chica - Khriz on Friday, January 22, 2016

North Dakota Blizzard

I guess it's a good thing I can't really go anywhere, anyway.

Original Post: 7-21-10 (Day 201 - New Spasms, New Pains)

Another post I found in my archives that I wanted to re-share.  2010 was the year I began trying very hard to get my legs stronger and began using my walker and pushing myself to walk more and more every day.  I documented my step count each day in my blog, and also updated with posts like the one below telling of new changes I was feeling.  Funny that I am still having the pain and spasms in the hips, but it's so much worse and I'm unable to stand or walk.  Back then, although I was having the contracting spasms, once they were over my legs would just go back to being limp and numb.  Now, I still get the very painful contracting spasms, but my legs no longer return to being limp and numb.  It's as if they are in a permanent contraction of some kind, and they are sensitive to touch which they never were before.

I'm trying to piece all of this together in my mind, and put it all down in my blog as well so that I have a record.  My memory isn't the greatest because of all the medications I have to take, and I want this all available to show to Mayo.

I do remember how great it felt to be up and moving around again, though, and I miss that so much! It's a struggle every single day not to fall into a pit of depression because of this again.

(originally posted July 21, 2010):

"All of this walking is certainly doing something.  I can tell by the new, and quite powerful spasms, and the new pains.  My left leg can spasm so strong and painful that it feels as if my leg will rip right off my body at the hip.  This has caused a new constant pain to form in that very same hip.  My legs in general are hurting more than ever, but in a good way.  It feels like they are sore.  The kind of sore you feel after a really long bike ride, or a muscle-ripping workout at the gym.  In other words:  it's all good!

For a while I still had some doubts as to whether or not I really would see any significant progress in my strength and ability, but those doubts are starting to fade.  The more new pain I feel, the more I realize walking is that much closer to a reality.  Standing up from a seated position has gotten easier, my endurance has increased, I can stand for longer periods, and walking is becoming second nature once again.  I catch myself reaching for my walker even when I've decided to rest and use the chair.  That development is the best yet.  I not only have to change my way of getting around, but my way of thinking as well.

I am getting really excited for my trip in six days.  I'm still a little bit nervous, but I'm more excited and looking forward to it than ever.  I know it will be hard work, and I don't care.  I'm so happy I am able to do something that just six months ago was just a dream."

You've come a long way from those skinny legs baby!

I found this post in my archives today and had to repost.  I know I have this actual photo somewhere, and I plan to find it and scan it for a better quality image.  I was 125 pounds there, smaller than a size 4.  When I originally posted this, I had begun walking with my walker and trying harder to gain strength in my legs, which I actually began to do and was able to walk for a while using a walker until I had my hysterectomy and then everything kind of went down hill again and led me to where I am now -- once again unable to stand or really move from the waist down.

(originally posted May, 2010)

"I stumbled across a folder full of photos, and while looking through it found this and it took my breath away.  The sight of my skinny, ill frame is shocking.  This was taken three months after my release from the hospital where I spent six full months of hell.  Notice the skinny arms and legs.  I have packed on considerable muscle in my upper body, and recently, even my legs are putting on some muscle.    This is a wonderful reminder of how far I have come.