August 28, 2020

I’m alone in my thoughts, lost in my head with a body that no longer works with me. So frusterated as you know what you once were capable of, and yet now you can’t even follow a color coded calendar of when to pay what bills, (our double check to make sure nothing is missed).

Trying to type, and yet only 3 fingers working with me, and every movement of my arm makes zingers up into the neck into the base of brain. Spelling of words are gone, and even finding the right words are difficult. Faces are recognizeable but the names of some are like a blur as if an eraser was swiped across the chalkboard of your mind and the word gone for now only to pop up again in the middle of the night maybe 2 days later.

Forgive the spelling as I mentioned.....i can't trust what keys my fingers will hit and sometimes its multiple so you get some weird words in here and caps....so don't take any meaning to it.

Memories are faded and some you can’t trust during the episodes….

I wanted to write this the other day but, well my body had other plans….its ok, you just go with the flow……LIKE CAPS you just go with the flow as it is too much to stop your thoughts and start back again.....you risk repeating - like this was up a day however I was in the start of a major episode and so I thought I better come see what horror was written....and what the words looked like. Really I don't wan't to scare others, or make people feel pity. I want people to know what Stiff Person Syndrome and Lyme does to a person. You lose yourself, your mental sharpness, your mind, your memories and even your personality as you fight so hard to not take out on others the anger and the frustration you have inside you. THe PURE RAGE.....If I had the strength and didn't know better I would take my arms and just shatter everything off my dressers, tables etc and leave a busted glass mess. However, I know what some things cost, I would never get back up from the ground once I got down to try to clean it and the dogs would end up at the vet and me I would probably be committed.

At first no sounds and no lights were a must, now I have learned soothing music helps, so I tried asking the unnamed one in the room for songs, but my mouth wasn’t working right so well you can say the selection was not quite desireable at that time. I like Korn and all but not with a screaming migraine and a body trying to seize up on itself.

Got Pink Floyd on, and that was it! I used to like some when I was younger, but now it takes on a whole new meaning…it relaxes and soothes and just takes you away from the pain……a new glimmer of help. And somehow Metallica came on - who knows - but it was "the unforgiven" and that too hit a cord...... When you take the time and just let something else flow through you it can transport outside the pain some: its more a background nuissance instead of being front row at the concert.

So, I meant to have something better in here - but like I said my brain had it - and poof it is gone....and I already have this first edit as far as I can take it today......so let's jump to the end and say...

Thank you to all those that have helped! You cannot imagine what an incredible gift for us to have so we could take care of medical bills, especially now as I appear to be progressing quickly.

I cannot imagine what the alternative would be without the amazing help from a crazy great man that stepped up to get this going! And the followers that have kept in touch and helped him and us reach a number that was never thought to be attainable. THANK YOU & LOVE YOU!

August 17, 2020

The Faces we Wear

We all wear different faces throughout the day and yes, I realize I sound like that commercial on TV.… And no, I am not selling or endorsing any medicine of any sort.

They have a good point, especially now that we have all been somewhat homebound for the better part of a year with no end in sight.

We have our home face: the I’m happy, uplifting, kid face on. You take a quick break to help teach your children in virtual assignments or entertain them. You prepare lunches, dinners etc… all while trying to meet deadlines and get those hours in as the company can see and track your access to their servers virtually.

On your Zoom meeting we may be half dressed, and hair partially made, a little makeup slapped on, but that is all cosmetic. Underneath it all your mind is going 100 different directions whilst you listen, you respond and you keep your office game face on. Intent to show little to no queues: your personal thoughts on any subject blocked, your political face shows no inner judgment on the subject matter as that will be handled separately and quietly, you fulfill your role.

You have your face you show to your acquaintances; the selfie pics you post on Facebook, and Instagram: the happy family, the fun of teaching the kids, and family dinners, always pleasant and “special memories”. On the inside you are worn out, frazzled, the kids are about ready to make you pull out your hair, and the spouse is on your last nerve.

If you are like me, after a few hours of trying to read, or looking at emails, my short hair that was once flat is standing on end. I have run my hand straight up my face and into my hair so often that I closely resemble Beaker of the Muppets.

Instead of having the hairy meetings that go on all day and the never-ending workload, I have a never-ending illness. Those that know me closely have seen the bad days. I have hair standing up, no shower, I do my best to just change clothes during the day so I don’t feel as if I am living in bed. I wake mentally going down a checklist and wondering: can I move without pain and what is stretchable, will I be able to walk or will my feet curl up as claws, or will there be some new and scary surprise for me today?

I put on a face to the public as happy, hair done, makeup on, smile, same as the rest of you. Behind the mask, I am cringing, holding my breath as a sudden cattle prod electrical shocks radiate along my entire right side overwhelming me: sucking in a quick breath, trying not to let out a moan or a little cry. I have a much shorter fuse than I used to, my thoughts are vicious and cut to the bone. Finally, aware of this problem, I work hard to keep a mental gate shut tightly, as I don’t want to subject my loved ones to this verbal barrage. Unfortunately not all masks can you remove…..

Finding the time to remove the masks and just be ourselves is crucial. Be alone with your thoughts. Share your innermost thoughts with your best friend, mate/partner or even a therapist. Seek out that happy place where you can forget about the world: a good soaking tub with a glass of wine, a long run, workout, maybe kayaking, whatever floats your boat. LOL

Realize and prioritize, personal time is important and balance must be found. Without the rest, your fuse gets shorter, and family life, work, and your mental health all suffer.

June 5, 2020

Walking…..yes actually hobbling but I am on my feet for a short period of time. It takes a big toll on me, but I can move! THANK YOU Dr. Cripps and Dr. Young!!!! Without them and their combined effort, none of this would be possible.

Remember, there are choices you make in treatment as they all have unpleasant side effects: that said, without the treatment life is excruciating and frustrating.

Walking is a big pick me up mentally. I have my days when you can do more and stay lucid a little while and may be awake more of the day, resting during that time, but awake nonetheless. That is a good day, and the bad you count on your friends and family for support.

Speaking of that, McKennon “Mac” Laas, my friend, has completed walking across New Mexico in his effort to fund raise for me! HE IS IN COLORADO!!!!!! Make sure to see his videos here:

www.youtube.com

and remember there is tracking and blogs and pictures of his journey located at:

www.thecowboyphilanthropist.com

I was reminded (well, ordered lol), by him to get out of the negativity going on that is so easy to be sucked into with all the media, and that I need to focus on the positive and me and he is right!

Look at him out there busting his tushy to raise money for me! That is the story persons should get out, someone willing to make a HUGE sacrifice for another to help. That is love, friendship, and just plain selflessness it is a glimpse of what mankind should be like! I look up to this man more than anyone could ever imagine, and it inspires me to hang on and push no matter what I go through! Keep going Mac, we are all behind you!

Today I want you to know that whatever hardships you are going through you can and will get through it. I am limiting my stressors so that I may take a little time for myself to try to draw and paint. My passions I do not get to enjoy enough, (and not binge-watching Netflix)!

One day at a time! No Pain No Gain!

May 10, 2020

The song for my day: Matchbox20 - Long Day

I may not be going through a breakup but chronic illness takes its toll on a marriage. The stress for your partner to keep their jobs through this period is so hard. Then you add in caring for you and the doctor visits that must be coordinated between schedules of several persons.

You become isolated as more people view you as begging for money when that is not your intention. You get sharp in your tone and spitful to others, just as if you have dementia; you say things you wish you could take back, but its already out there. You have lost your filter.

My full intention is to educate what Lyme and Stiff Person Syndrome does to a body and how these two diseases interact with each other and one may have caused the other. However treatment for the two appear to counteract. When I am treated for SPS the SPS will flare then settle down some, while the Lyme will kick up. Then we treat the Lyme a little more vigorousely and the SPS begins to kick in a bit more.

Its a game of finding the right dosage and meds to reach a somewhat more stable and tolerable level of functioning.

It is a mental game and this morning I am losing that battle, but this is just one of many battles in the war.......

May 6, 2020

The power of positive thinking.

When you are sick and in pain no matter what meds are given to you; you must make a choice. Do you get on living or get on dying….

The Get on living requires you to accept the pain, and then thank your higher power (mine is God) for the good things in your life. I thank him for the good moments, the friends that love me, family that support me, and generally come to terms that you don’t need negativity in your life. Just erase it from your brain and every time you go there make the decision to think about something else. For me today it was suggested to remember and go down the paths I used to run in my mind. To remember the smells, the feel of the pavement, the breathing, the wildlife I used to see…basically relive it with as much detail as I can. Meditate in other words, to whatever floats your boat…waves just don’t cut it for me…

Because here is the deal, the meds only take me so far, but the mind is a powerful tool to use to transport yourself somewhere else and just lessen the pain a bit more, maybe even get lucky and go to sleep and just try to sleep it off in the hopes your nerves will calm down and ease the pain.

And Just maybe…..you can get some time doing what you love……No, not bills, and Facebook. I’m talking reading, maybe waking the dogs in the wheel chair, soaking up some sun before it gets too hot on the patio; watching for bees and dragonflies, maybe a “vibrating midget bird”, (hummingbird). For me it’s painting and drawing. Using every chance you have being you!

The other choice, well that is not an option for me. You can get so upset by the pain and so engulfed in it that it is a downward spiral making not only yourself miserable but others too; as you lash out feeling sorry for yourself and what you are going through. Eventually you drive everyone you love away or make them resent you for what you are putting them through.

You take your pick……I know mine.

April 14, 2020

IT HAS STARTED!!!!! THE DAY HAS COME! MAC IS ON HIS WAY!

He used to hate it when I mothered him at work, and since he always reminded me in some ways of my younger brother, I couldn't help it.

Now that he has started the ~3,100 mile journey, I am scared, nervouse, excited and in awe all at the same time!

I am cheering him on all the way, while I wish dearly in my heart that I could do the hike with him! In a way I will be while tracking him on our website www.thecowboyphilanthropist.com

but also watching the videos and updates that he posts.

This is my carrot on the string right now as times are tough, treatments are harsh and I am experiencing a lot of side effects to the meds. But that is my life and I live for times like these, where I can collect my thoughts and actually type for a bit before I reach my limit and I have to rest and lie down for a while. Most times I am down for the rest of the day.

I am trying to change my day and attempt to draw and get back to what I love for a little while every few days to get that back in my life and can't wait for this self quarintine to lift so I can get out of the house - even for a trip to sams!

Thank you for your support and please check out Mac as he makes this selfless, incredible journey! Thank you!

March 31, 2020

Hello from the Fishbowl as I call it in our website for the fundraiser....

www.thecowboyphilanthropist.com

Yes, even with all that is going on - Mac is going through with it as long as the trail remains open and he can abide by the rules out there as he hikes along! 13 days to go!!!!!!!

I am actually scared for the man: more than I am for myself really. He tells me not to worry and that he is tough; and that I know he is. However, it is so far away from everyone, that if something were to happen, how to get help? That is what eats at me. I need to pray and know all will be just fine and he will be practicing social distancing to its fullest!

Me, I am hanging in there, just like Mac I am one tough lady and I know it, but these last few treatments are even getting the best of me and we are of course completing the SPS treatment which does help. It creates a curve of its own....slowly get better but with side effects, next being pretty decent, (topping out) some good days here, and from there to back down and then at worst back to spasms and freezing. All with the pain that we somehow can't completely get under control. Those you just learn to tough out and take a minute at a time.....baby steps.....

So I am in the buildup of the SPS treatment to getting that little bit of life back...but the Lyme treatment is kicking my tushie.....even right now its hard to breathe, chest pains and leg pain and I won't last much longer here at the computer writing...

But thing to remember: I am no longer the only one in the fishbowl, I have people that love me, enough to do crazy things like hike 3100 miles, and I have lived one hell of a life and don't regret much at all. IF (big IF here) anything were to ever happen.....(Covid 19 if you come my way - do your worst - as Captain Dan would scream into the storm)! I can take ya!

The light of the day - is Mac's willingness to do this epic journey! Thank you Mac! Please support not just me - but him and his willingness to do this - Paying it Forward at its best!

March 7, 2020

37 days……..

Yep, 37 days till my friend Mac starts the journey of a lifetime! I am so in awe of him: proud and yet scared, excited, and jealous too! This is exactly the type of thing I would have loved doing! I am an avid reader, my favorite book was by Dean Karnazes, “Ultra Marathon Man”. In it he discuses his experiences, the good, the bad, the outrageously insane, and the yummy and most uplifting thing when you are low: chocolate covered expresso beans!

Reading excerpts from it and watching St. Ralph were part of my pre-race routine to stay out of my head. Every start line was were the lines from the St. Crispin Day Speech was run through my head or spoken aloud as every person that toed the line with me that day were my brethren, and only we had the courage to live that day to our best not knowing the days outcome.

Yes, I was in the midst of building up to beating my Ironman 70.3 time, then conquering the Full 140.6 Ironman and next on the bucket list was the 50 miler in Huntsville to be used as a stepping stone. This was all in preparation to get on a crew for the BadWater Ultra Marathon and later run the darn thing just to finish. I was inspired by Dean, and was considering trying the Western States Endurance Run…..that is if my IT bands held together.

You see it never occurred to me that I would get sick. I was healthy, in the prime of my life, working on finishing my degree, and starting to reach my goals in my career. I knew what I wanted and was not going to accept any other outcome. That is just how I think, positive, competitive and always do my best. This was in my DNA since I was little and that as long as you give it your best you will persevere. I followed the Golden Rule taught to me by my 2nd grade teacher Mrs. Smith. I treated persons as I would be treated, help and put my wants aside to assist others in the hopes that someday those persons would do the same.

Now my pace might have been barely more than a crawl, but I wanted to be the fit, short spikey haired woman you see that is competing long beyond what most people consider appropriate. I wanted to keep up with the youngsters to a point and keep doing challenges, American Ninja, things like that well into my 90s! Hey, you laugh, but I was the one in awe competing with persons in races that had their ages on the back of their legs in big bold black sharpie (yes, it is a triathlon thing: embarrassing but then for the competitive ones helps you know if you are passing a person in your category). See this idea of mine was not uncommon. I often swam with a 92 year old gentlemen that was training for the Senior Olympics and he discussed how he had only 3 competitors in his age group. I had one trainer that was in his 90s for Ironman competitions and I had worked out with a trainer at Spectrum that was in her 70s and yet looked 20+ years younger that was doing the same for running!

During one triathlon I was racing and just rocking it! I was passing persons left and right and to top it off a bunch were from my age group! One lady I passed was a spry 84, and another gentleman was 92, running in what I called the Tri from Hell. There was not a single breeze, it was humid, it had flooded recently and the double loop we ran brought us through a wooded area that felt like a Louisiana swamp. Everyone was dying from the heat out there!

Now being from San Antonio at the time I was at an advantage over my Dallasite triathlon brethren. I had run and biked all my training through the wet humid season and where others were struggling, I was making up lost time and feeling great! I remember so vividly passing that man marked 92 and congratulating him on his fitness, and even he was down on himself because I was passing him! (Imagine that! Us competitive folks, don’t know when to take a moment and feel good about our accomplishments! We always have to be looking to how to better ourselves and push beyond!)

Anyway, it wasn’t long after that I saw a young lady was slowing down on her last loop in the run and she was in trouble. I decided to chat her up hoping to get her mind off the run and past the woods till she could see the finish and get her second wind. She was a first-time triathlete and was doing good, it was just a hard race. Although I knew I had raced well and was passing up persons in my age group I felt it more important to help the young lady than to try for an unsure podium finish. Well, let’s be honest here, I was hoping to get her going AND get a podium finish, however that wasn’t in the cards….

Sure enough, my little sidetrack mission worked, she kept the feet going, I helped her catch her breath and then push a little more and then showed her that just past this bend is the finish! Reminded her of the picture at the end to smile, keep her chin up and look happy and not like she is dying as she crossed the finish! She kept running, and was looking for her parents so she could make them proud and get her picture moment! I stayed back so she could have her moment in time as your first race only comes once. She had finished and I felt good for helping a newbie out. Although no podium finish in that race; the good I felt from helping her out lasted much longer than some award on my shelf. I’ll settle on knowing that she was 20 years younger than me and yet I was able to help her!

So now you can see, my thoughts on racing and going strong were not just dreams but something I fully believed I could make a reality as long as I put in the physical preparation. Just sometimes God has a different path for you to take for whatever reasons.

Today, I have a therapist and now a Lyme doctor that have both told me on different occasions that they fully believe that I deal with my pain and the struggle so well due to all the training and mental preparedness that came with my choice of sports. I accept what I can and cannot control, handle the anxiety and move on. You cannot dwell in racing or in sickness on what is not working for you in the moment or you can mentally beat yourself up and the race is over before it has even begun! You must deal with it, calm yourself ,solve the problem as best you can, and keep going.

I know this illness and all the complications that come with it may not be a race to you but it is the race of a lifetime for me. I can live vicariously through my friends, and I hope that what little I write, and do may be the help that someone needs to get through tough times and to remember there is always somebody in worse shape. No Pity Party Allowed. Well…take 10 minutes maybe 30 tops, that is it…..and move on! I still read my St. Crispin’s Day speech, I can’t watch St. Ralph, it is too much along with Prefontaine and Without Limits, but I can read Deano and his tales in Ultramarathon Man and imagine myself transported and in his shoes……

Mac buddy, you will be added to the list! I can’t wait to be transported out of this body, as I watch your videos and read your updates; if only in my mind so that I may live a moment of time in your shoes on this adventure of a lifetime!

February 9, 2020

It’s been a while, I am still battling SPS and Lyme, however I have a different attitude and acceptance of the whole thing. I do my best every day, that is all you can ask of yourself. I have some wonderful friends and family that help out, bring food, take me to the doctor appointments and just listen or be there for me even if it is to get some human interaction since I am pretty much housebound.

Just a quick update we are using botox (a Lot of botox) to deaden the muscles that pull the worst, unfortunately there are non left for my face LOL! And we have started Rituxan treatments which have given me some of my life back! After treatment can be a bit difficult - but after a couple weeks I the spasms lessen and the seizures stop and I have a period where I can be me! It doesn't last all day - but you know what some good days and better than none and I will take them!

I try every day to do something with meaning, a goal, a purpose, even if it’s something small. I try to push myself to remain cognitively stable, read or listen to Ted talks if my eyes are blurry, or respond to emails, watch friends and interact on facebook, try to walk all I can safely so I hold onto my muscles.

I've learned it’s mind over matter. You have to stay mentally strong, try with all your might and accept what you can do that day, then rest up and try again. It’s marathon training and triathlon training all over again (Without my MEL Whan Black and Brandi Shipman pushing me unfortunately; absolutly best trainers in San Antonio) and without that base I would have given up a long time ago but you know what? THAT IS NOT ME!

It’s time to go back to my mantra from Marathon days when all I could do was repeat the words so I wouldn’t think about pain or even how much road was ahead it was pushing through the now just keep moving.

I am strong, I have the will, the strength and determination and I will conquer!

And now I have even more pushing me: I have a great friend, mentor, and partner that is doing a huge event and making an unimaginable effort to raise funds for me. This is a HUGE CAMPAIGN effort which involves hiking the "CDT" aka The Continental Divide!

This is hiking on foot thru desert and mountains from Mexico to Canada. He will be traveling on foot 3,100 miles!!!! He has provided me something I have not had in a long time a REAL PURPOSE! Help all I can, and just motivate him! He is the most surprising and strong-willed person I have ever met and I am in AWE! This is the time for THE GREAT WESTERN EXPERIMENT!

Here he is doing this for me and all I can do is not let him down! Thank you Mac for all you are doing and you affect me in more ways than you know; this makes me push harder, fight harder, withstand the Lyme treatment a little longer….I want to get well…I want a life…and with this effort I may be able to have some of that again….THANK YOU WITH ALL MY HEART.

May 9, 2019

Well, I wish I had good news but I just seem to be the 1 to 4% of persons that either procedures don't work on or I get weird infections etc. It appears I have Black Mold Toxicity on top of everything else (not from this house), and unfortunately we are having to take extreme measures with this house not to get me sicker. I also have absolutely no Immune system - like my blood work came back scary low - and I am on my 3rd version of shots trying to fix this - but nothing is taking, it is as if my bone marrow is shutting down. I have several viruses that are making it the perfect storm - Epstein Barr, HTLV1 & 2, and Parovirus - yes you read right like the dog......LOL - and now I am testing positive for antibodies for Pneumonia.

I have doctors, doctors, and more doctors......which means many bills; some insurance will pay and some that they won't and I'm stressed over the changes to the house that need to be made for my wheelchair so I can get to the critical places like bathrooms etc.....

I am out of funds from here and I thank the ones that have been generous and helped much love to you! And kudos to the church group that even came out and took care of my yard! Such a blessing!!!!!

I'm tired, the treatments are harsh and long and I have a long way to go. Just pray that my LTD kicks in as a Physical Illness so that I have better insurance and can supplement some income otherwise I am going to have to pick and chose what treatments I can afford.

Please help! I am struggling to fight and remain upright, to hold onto my legs and arms and also my memory.

THANK YOU!!!!!!!! Much love and appreciation.

April 22, 2019

ok today I got some labs which are not good, and I can hardly breathe. I have had to try to manage my medical bills to submit for payment then make sure they are paid. I want to thank each one of you that gave towards the charity because so far we are managing to take care of what has come in and especially the hospital bills. Thank God for that insurance! I just hope that come next Monday the court sees that I am in no shape to work in any capacity and then come next October that UNUM changes their mind saying I am mentally ill and not physically ill. That way they can get out of paying the insurance I paid for. Something people need to know to watch out for.

But the main point of this is thank you!!!!! We could never make this work without your generosity and support!

April 17, 2019

I am in bad shape, short term memory is pitiful and as far as walking well that is ability is dwindling. I am trying to paint but as I was eating GF oatmeal the other morning I lost my ability to hold a spoon so tried holding it as a child would, and it was successful temporarily till my arm could no longer make the movement, so had to switch to the left hand which was better but we can say slow going.

The last nerve testing showed that it had moved into my right arm but at that point I had not realized to what extent. I am getting numbness and pins and needles and that lovely burning feeling in my forearm and the other day lightning like shooting pains was coming from my shoulder all the way to my hand. It makes it very difficult to really use that arm with much confidence and it is my dominant hand. This is what shakes me, I can live in a wheel chair just let me have use of my arms for a while as art is my stress reliever.

You know all I can say is don't take advantage of anything in life because it can change in an instant.

So I am going to ask you to please link and get your company if they match to match any donations you make as this is a total non-profit site! They manage the funds and I submit the bills either before or after I pay........IT IS GREAT!

So if anyone feels like helping out I could use it. All of the funds raised have been submitted to pay bills, it is amazing just how fast it goes! So anything extra in your wallet even a five dollar bill could be more helpful than you know as I am having to do more tests and they are not paid by insurance.....its 500 here and 395 there and another 395 for another test and doctors then want quest which our insurance doesn't pay all of their costs so more bills there. You think when you hit your max that , that is all but it is not.

So please keep me in mind and use the write off for next year! In the mean time I will make due and try to stay positive!

April 5, 2019

OMG - Had to ride to San Antonio and back in one day and of course it was not easy! Thank God for the larger wheelchair and the Mobility vehicle we had to buy as there was no way I could have walked into the office. Had a full body spasm/seizure on the way to S.A. and it took forever for the meds I had to take effect so I was not feeling well at all as soon as I arrived.

Then to come home to more bills that were unexpected as I have hit my out of pocket, but there are some billing places just now sending bills for the first quarter, so there goes all the funds we have raised. I am just glad for those generous souls! We must be so carefull on costs since we have no idea what will happen in the future........will we qualify for disability? Will UNUM - LTD finally change their mind and decide they actually believe the diagnosis? (We have the labwork, that neurological illness cannot explain). I don't know how they can deny but from what I see on the web this is common. So wee have to save for an attorney.

You know, I just pray and hope that each day it will work out. Please say a prayer and we shall see what happens. And if you can help out it would be greatly appreciated as these bills that are coming in take a chunk out of your hope for the future.

March 24, 2019

I am basically fighting for my livelihood. I have a disability hearing coming up soon and hoping it is positive. If it is not I may lose my LTD and if that happens my husband and I are in deep you know what!

I was just hospitalized again for anaphylactic shock from a treatment I had twice before without issues however something this time set me off and I had an extreme side effect and 911 had to be called as I started not only being sick but the spasms started cutting off my airway. The EMTs were great and although we tried the emergency seizure med I had it was to no avail. The EMTs gave me benadryl and morphine and it settled it all down but a fever. I sat in the ER for 36 hours and then once I had a room the same med that was given to me via IV that sent me there was given to me AGAIN although I protested! Then the nurses asked me what to do!

In between screaming from pain as it felt as if fire was going through my veins and crushing my joints what to do and it finally settled things down somewhat, however it started a mass reaction in my body to everything.

All I can say is if you are in a hospital don't trust the staff to give you the correct meds they are so very busy, you know your meds, have it typed and keep it with you and ask before they give it to you! They are overworked and by the time it is time to change shifts mistakes are made or doctors decide that certain medication are not needed and remove them from their list without telling you. Last time I was there that happened and sent me into withdrawls for 4 days and took the rest of the time to get back to some sort of normalcy.

So I am at home, without any Lyme meds and losing my functioning. If it were not for spell check I would not write a legible update as my spelling memory is, at a loss right now. My legs are useful some of the time (only first thing in the morning when I am rested), after about an hour I am in a wheelchair.

I am trying to find out if disability will allow you to try to take one class at a time self paced and of course at home, just in case I can return to the workplace. Isn't that the ultimate goal? I am trying to keep my mind and not lose the knowledge I have worked so hard to gain and working as an advocate for myself is so very tiring. I can write something like this and then it is rest time.

But you know what that is ok - I can deal with that! I just can't lose my LTD that I paid for through work that only said would cover you till 65 if you were over 45. So I signed up not knowing they do their best to deny you at every turn, usually once they get their money back from covering disability for you once you are approved. Now please know this is not paid through work it is a separate Insurance Company - UNUM. Look them up and if you have them please pay attention and ask for the real policy, not just the marketing fodder.

My SPS or stiff person syndrome is continued to be treated, however it is progressing at a faster pace than we thought and I am having more stiffness in the morning and it is causing more spasms and having issues controlling it even with the treatment which does help!!!!!

I am even considering the treatment that put me in the hospital for 11 days, then had to come home and have the IVIG. So how does a person live a life with approximately 13 days a ,month in the hospital? How is this not a disability? That is what I question.....

I have no clue but I guess someday we will find out and in the meantime I get to try to fight for my paid help that may never kick in.

Chin up - pity party over and time to get off this thing and try to listen to some Ted talks etc that will keep me thinking.......

Roll on ;0)

December 22, 2018

What do you do when you have an incurable illness along with a nasty bug inside you? You fight like hell!

I am Alison Largent, I used to be an Ironman 70.3 Finisher, marathoner, and all-around athlete along with working full time and going back to college and holding a 4.0 GPA at Texas A&M San Antonio. In other words, I loved and lived for the challenge, and once that challenge was completed I was looking for the next, I had a passion and drive that few can compare, along with a work ethic that comes along with those that compete in these fun yet crazy sports, then one day it all changed.

It all started when I was approx. 36 years old when upon waking and trying to get up I flat hit the floor. I thought I might have hopped up too soon but once downstairs I stooped over and instantly hit the floor with vertigo so bad I had to call for my husband and crawl to the couch and sit in one position all weekend to not get sick. The general practitioner said it would go away but it didn't; and eventually I saw a specialist, Dr. Brian Perry, who specializes in Otology/Neurology, who said I did have water in the ears, and that I had suffered a major hit to my balance nerve and lost approximately 60% of my balance which would not be regained and was probably due to a virus or bacteria. He also stated I could not afford to suffer such attack again.

We changed my diet and called it Meniere’s disease and we had a fun year playing with different combinations of medicines to improve the migraines and try to counteract the vertigo, and although we did get improvement with the migraines and eventually the vertigo, however it came and went from time to time. During that period, I was hardly able to do my Escrow Officer job without dry heaving and walking like a drunken sailor as every movement made me sick. I even had to have either my dad or my hubby take me to and from work it was so bad.

I forced my training in a safe manner bike stationary stand and walking from tree to tree at first and attempting to swim in 3 feet of water, and learned what I could and could not do. By the time I went to physical therapy I had it down. The one thing that remains is that I cannot walk on anything too soft or padded or I completely lose my balance. I also must have a horizon line as my balance is strictly vision based; so large crowds and parties where there is a lot of movement I fall or just have a drop attack as I can’t remain standing. This has come and gone over the past 11 years.

With hard work and determination, I returned to great health and competed and worked hard and always had morning energy and couldn't stand not to go for my morning runs anywhere from 3 to 10 miles this lasted till 2013 after the Ironman 70.3. And that was the beginning of the end.

After this accomplishment I went for an easy swim and noticed I could not breathe. I returned to my general practitioner who upon examination noticed I had a very bad respiratory infection that took a month of steroids and a month of steroid breathing treatments and I was benched for a long time to let my body recover but it never did.

I noticed more cracking, and stiffness and a general overall malaise that I just could not shake. I began to catch every bug and virus and flu that circulated and with that my immune system wasted away.

With my health in mind I switched jobs and tried to workout however my body wouldn’t take it. I went back to school, one class at a time at first and it was ok till the worst of my syptoms showed up and I began having concentration problems and severe pain from sitting for long periods of time or if I stood it would send pain straight up my legs to my spine. So I was sunk either way. Then my eyes started having issues and still do. I went from 20/20 vision in both eyes to double vision and having to wear prism glasses and have a flaring of the left optic nerve.

My short term memory became affected as I started having episodes of nystagmus (twitching of the eyes) and when it happened I couldn’t concentrate on anything but that. So I had to become reliant on recording my classes to make sure I had everything and at work I had to take as many notes as possible and live by that steno pad. I learned to cope and fake it till I made it, In fact I did it so well no one knew but my closest of friends I was sick and that wasn’t until one day when my leg or arm would spontaneously shoot out and it was witnessed by them.

When it started affecting my entire body, my walking and my complete cognitive function I knew we had a serious problem and I sought out doctors and it took a really bad day and a referral from my previous ear doctor to get me to the Neurologist that was able to finally diagnose me.

Now don’t think this was overnight, I have been through many doctors all with different diagnosis and everyone had their own theory. Yet she stuck it out and stood her ground and for that I will forever be thankful. She was the one that found the Stiff Person Syndrome (SPS) AND Lyme when so many others just missed it, or were to blind to see anything but what they were looking for and were not open to other options, and all the while this had shown up on multiple tests prior to these multiple second and third opinions.

To date I have been through numerous MRIs, Spinal taps, X-rays, blood draws and labs, EEGs, nerve conduction studies and more doctors than you can believe.

The problem is SPS is a one in a million disease with no cure is so rare no solid research has been gathered and they are just starting to make some risky breakthroughs with treatment, however the cost is $400,000.00. Yes, that is 400K and it is not guaranteed to work and not many insurance companies are willing to take the gamble. Secondly, each person is different and as such this disease is not consistent across the board.

Then, you have Lyme Disease, “The Great Imitator” as many of its symptoms are often misdiagnosed as MS, ALS, and Parkinson’s until treatment reveals little to no progress. According to the CDC, Texas doesn’t have the correct tick for Lyme Disease, however their information has not been updated in almost 10 years! That is like saying there are no alligators in Louisiana!

This is why it is so important to fight and to be your own advocate so you can get the best treatment options. My doctor’s mentor is on the current Congressional Committee updating the testing and treatment of Lyme Disease.However, it cannot come soon enough as their current stance is you must catch it early, you treat it with one month of antibiotics and if that does not cure it you must live with it as Chronic Lyme Disease or PTLDS (Post-Treatment Lyme Disease Syndrome).

So, that is my story I have Lyme and SPS both autoimmune diseases and have started collecting more. To date I have Epstein Barr, Hashimoto’s, Hypothyroidism, Hypotension, and several others, the list continues and I continue to get sicker and sicker so much so I receive shots that chemo patients get to boost my immune system so I don’t have to live in a bubble as any virus or bacteria could be very bad and even deadly for me. With this hit to my immune system and thanks to spasms and seizures that go along with SPS, I have been in and out of the ER or hospital 24 times in the past 26 months!

What you need to know is this, I can’t get out, I hurt almost 24/7 a day and I walk like Frankenstein even with a walker and that is assuming my legs decide to work that day. My vision has literally doubled (I see two images of everything) and in 7 months we have had more changes and again I am having to have my eyes rechecked to see if I need another set of lenses. I sleep more than I am awake and I can hardly read a paragraph on some days and have it sink in, whereas in my past work-life I used to crunch numbers with the absolute best of them and go over contracts and negotiate oil and gas leases. I had to be knowledgeable with many legal terms and their consequences; I was no simple secretary.

I see a therapist and I have accepted my circumstances quite well and can joke about it and I live the most out of life that I can, however it is difficult to get out without the outside world and stores being too much to take in. I was an Ironman I don’t know how to not push and give it my all, but with this you can’t or you pay; either with a seizure and an ER visit or you end up in bed for 3 days in severe pain or comatose. OH, and my poor husband that has to listen to me ask the same questions over and over, I actually feel like Dory from the movie Nemo.

We have had to move to buy the house behind my parents so that I could have assistance on a 24-hour basis. The house is great; however, it needs work to accommodate my wheelchair and walker so they will fit through doorways and we, (meaning my hubby and friends) have done some of our own “adjustments” so I could gain access to the kitchen with the big wheelchair YAY!!!! Now it really needs some help but I can get in!

I have had to go on Long Term Disability status and pray to God that my LTD insurance company makes good and approves my LTD Physical Disability Case instead of going for the shorter payout which could leave me homeless in 10 months unless my filing for disability somehow gets approved.

To sum it all up, this illness has cost me my job that I loved, the city I lived in and miss along with my friends there, my athletic lifestyle and my health, what is next, my life?

All I can say is please be vigilant with your health as I would never wish this on my worst enemy, not in a million years.

This is a non-profit we are working with so everything donated is a tax write-off, and they pay the bills much like a trust so there is no misuse of funds. If you are willing to help with my situation and help me keep my house, pay doctor bills and hold onto what life I have until they find a cure or slow this down I would greatly appreciate it! And If my purpose from this is to get the word out about these awful diseases so be it, I can live with that too because that is an important job and I have never backed away from a task with meaning.

Sincerely,

Alison Largent