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

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.

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

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

Unable Once Again

A lot of you may not know this, but when you have a hysterectomy there are a few different versions to choose from.  Mine was a total hysterectomy, which means they took my uterus and cervix, but left my ovaries.  At only 37 years old when I had it, had they taken my ovaries, that would have plunged me into menopause, which to say the least would have sucked.  However, the odd thing that comes with leaving the ovaries is I still experience all of the hormonal changes a woman goes through monthly since the ovaries are, in fact, what produce a woman's hormones.

So, although I am sans a uterus, I still get PMS.  I get the cravings, the mood swings, the bloating and the sore breasts, just no period.  I'm grateful for the last part, obviously, and also grateful to not have gone through menopause at only 37, but I do get tired of still dealing with all of the annoying side effects of being a woman without the ability to at least have more children if I choose.  Not that I would have any at my age and in my current condition, but it's nice to have the option.

I decided to write this today because I am having one of those days.  A day in which I feel fat and bloated but all I want to do is eat.  Sick of being cooped up inside, but don't want to leave the house. Enjoying the sun shining, but also kind of wishing the inclement weather that is on its way would get here sooner so I can hole up and be a bum all day without feeling guilty.  I need to clean my apartment, so much so that it's driving me crazy each time I look at it, but I have no motivation to do so.  And, add to all of that, I didn't get any sleep last night as my legs decided they weren't going to let me.  The pain, the spasms, the tightness -- it all makes a recipe for zero sleep.  Imagine if both of your inner thighs were in a charlie horse spasm, but also were contracting in real, and very painful spasms over and over again every few seconds non stop all night long no matter what you did, unless you sat up. That's what I am dealing with.  So exhausted I can't keep my eyes open, but forced to sit up on the side of the bed until they feel a little better for at least thirty minutes or so, and then I can lay down and pray for sleep for about an hour before the entire process starts all over again.  The contracting spasms themselves wouldn't be a huge deal.  I've been dealing with those for 18 years, and they always came on worse when I laid down to rest.  It's the new symptoms I can't handle.  The tightness and lack of motion.  My legs won't go straight, and also won't really bend, they are just kind of stuck in one position.  I'm quite literally crippled up from the waist down with everything just kind of contracting and contorting whichever way it wants to go, none of which is comfortable.  The pain is a burning kind of pain like everything is on fire.  That's a hard pain to treat with even the strongest of pain killers.

I miss being able to stand and walk short distances.  That was what gave me that added freedom I hadn't had for many, many years.  Rather than being stuck in the chair - like I am once again - I had the ability to climb a few steps or walk enough to go where the chair couldn't go.  That is once again all gone and I miss that little bit of freedom.  My daughter and grandson are moving in to a new apartment today, and I can't go see it or be with them because there are concrete steps out front.  I would love nothing more than to be there with them, helping her unpack and get organized.  I wish I could enjoy her happiness and her new found freedom, too.  She has sent me pictures and is telling me all about it via text, but I'd give anything to be there with her watching the joy on her face as she begins this new chapter of her life.

With limited abilities and illness also comes the loss of communication with people in my life.  It's unavoidable no matter how good friends are, or how much they may love you.  People don't want to be around someone who is in constant pain.  They may feel bad for you, and may say they will do anything for you, but in reality (and I know this from lots of experience) most people will fade away during really tough times.  I understand the process, but it doesn't make it any less difficult.  It's just another thing that gets lost during tough times like these.  I don't have the energy or the ability to do much of anything, anyway, so I guess it's for the best.

So, that brings me back to today.  During all of this pain and suffering, the one thing I can embrace is my ability to rest and do as I please and everyone just has to understand, including me.  I am physically simply unable to do much else, so I might as well embrace it.  Lots of people would love to stay in their jammies all day and do nothing but watch mindless TV and take naps, so I will appreciate the ability to do that.  With the loss of other abilities comes new ones.

What Happens At Grandma's Stays At Grandma's

I feel fortunate to still be able to take care of my grandson while my daughter goes to work as a CNA.  My hope is that I stay well enough through all of this to continue to care for him.

Just Got The Call

I just received a call from my neurologists office that my insurance approved Mayo, and now Mayo is reviewing my files.  I should hear in 10-14 days if they've approved me and when my appointment will be if they have!

Please, oh please, let them approve me and take me in and figure out what ails me! (praying)

Back To It

I've decided to get back to my blog.  It's been a very long time since I've posted anything worthwhile, but I had good reason.  I think.

I spent the last 5 years or so grieving yet another loss.  I moved from Florida back to my hometown in Minnesota, and in the process went through a ton of trials and tribulations -- to put it mildly.  I had no money, no car, a shitty basement apartment.  But, I had a roof over my head and food to eat (barely).  I've spent these years working my hardest to get back on my feet, and so far, so good.  I am slowly getting back on my feet figuratively as well as literally, although I've suffered a few setbacks to the literal aspect.

Thanks to a person I will no longer refer to as having any relation to me, I have a nice car.  I live in a great apartment on the top floor in downtown.  It's fully handicapped accessible all the way through to the bedroom closet, and the rent is cheap.  And, I've been back to work and doing well.  The biggest drawback I've had recently has been my health, once again.  I am dealing with tons of pain, tightness, and loss of range of motion and flexibility.

Although, I do believe it's because my legs are coming back.  After nearly 18 years, I truly believe something has healed and I am fortunate enough to be gaining full use of my legs again.  After 18 years, anything that comes back to life is going to be mad and not feel very good.  I see the doubt on my doctor's faces when I mention that idea, but I don't care what they think or what they think they know.  People in comas have come out of their coma after 20 years by some "miracle", so why can't my legs do the same?  They can.

The tightness I've been feeling, at first, I thought was spasticity, but now I am convinced it's tone returning.  They are extremely sensitive to touch and jump and spasm when touched, and that just makes me think well "duhhhh!"  I can feel more than I could before and those nerves that were dormant for 18 years are now alive and awake.  I'd jump and flinch if I hadn't moved in 18 years, too!

I am reminded every day of my favorite doctor, Dr. James Burnett, and how after asking me how I was doing and I would say "my back hurts, but other than that I'm good", he would say "well, at least you can feel it!"  That's exactly what I say to myself every time the pain in my legs gets so bad I don't think I can handle it.  I just shut my eyes and remember him and say "at least you can feel it".

This all started in my hips at the beginning of this year, and has since progressed down to my thighs and knees.  This tells me it's moving down, which is what it should do if there is a nerve that is healing.  This is great news.  I am interested to see where I will be in another couple of months!  I'm very scared, but I'm very, very, very hopeful and happy that my gut keeps telling me I'm getting my legs back.  I always listen to my gut, it's never wrong.