Tuesday, May 3, 2016
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 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
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
|Heading in to Minneapolis for my first appointment with U of M|
|Aloft Hotel, Downtown Minneapolis - yay for low platform beds|
|We even had a view of the new stadium|
|My loves enjoying the peaceful time.|
|Had a bath in the sink! I feel great!|
|Yummy Tuna Sashimi!|
|Mom and son quality time :)|
|Sunrise in Minneapolis|
|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.
Tuesday, March 22, 2016
Saturday, March 19, 2016
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
I will take pictures and of course update a lot!
Thursday, March 17, 2016
Wednesday, March 16, 2016
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
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
Sunday, March 13, 2016
Saturday, March 12, 2016
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.
Wednesday, March 9, 2016
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
|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
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.
Monday, February 29, 2016
Sunday, February 28, 2016
Saturday, February 27, 2016
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
Monday, February 22, 2016
Sunday, February 21, 2016
Saturday, February 20, 2016
"You have to be completely consumed with your outward appearance to look in a mirror and not see the terrible person within"
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
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
Friday, February 12, 2016
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
Sunday, February 7, 2016
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
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."