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Quick Update & Tips On Keeping Your Mind Busy While Being Disabled

14 May

Quick Update

Sorry I haven’t been around much or posting new treatments or tips. I haven’t really been on any new Lyme disease treatments since my doctor said my case was too late stage and went untreated too long so there wasn’t much left to try expect stem cell which I cannot afford. I still just take low 100mg maintenance doses of minocycline, doxy and tinindazole as needed.

I still can’t get IVIG covered again although I’m still in a study program so I’ve been weaker. My heart has been the focus and seizures or neurological issues. So I’m using 1000mg of Keppra. I noticed when I ran out and only took half a dose I had worse tremors, involuntary movements, throwing things on accident and my hand coordination was off so I accidentally hit my hands on things pretty hard bruising them or breaking veins. Other than that just been sitting at home and still fighting.

Tips For Those New To Disability, Homebound or Bedridden

If you are learning to deal with being disabled, homebound, bedridden or new to illness and not sure how to take your mind off the bad things here are some tips that have helped me over the years. In 2009 a was forced to medical retire & became bedridden & disabled. My whole life changed & I literally lost everything. What kept my mind off things was finding a hobby I could do even though I could barely see or type.

Many years ago I started this blog to share my illness journey with others & give tips. When I could no longer keep up with my blog I dedicated all my time to art and my sports account. Art is a good therapy when you just want to be alone or zone out for a while & take your mind off things. I also started adding many different music libraries on my iPad & listen to a ton of music. I have some to relax me for anxiety & music for every mood. I used to work so much I rarely had time for tv so now I use my time binge watching series & shows can really take you away.

There are some really good ones that will keep you busy for months. I used to sell my art at a gallery for a football player. I bought a bunch of books but couldn’t read them as my memory got worse but if you can still read there are many good book series to keep you busy. Some of the new video games are almost like movies with actors playing parts in them & have a great story line to follow so they can keep you busy for months. Phone/tablet apps are getting better and many can keep you busy every single day where you come back to play, win, do art, chat & fun. Being disabled is depressing but you have to adapt to your new life & find something to pass the time so you don’t focus on all the sad/bad things you are going through. You can try photography, scrap booking, Pinterest hobbies, cooking…. so many options. Hope these tips help. Hang in there everyone we can do this.

Lyme, Fibromyalgia & More

6 Feb

Sorry I haven’t been active in a while. At the time I started this blog I was sharing my Lyme disease journey in real time and was only one small voice spreading awareness for many different illnesses and disabilities. Now that Lyme disease and other illnesses have finally hit main stream media you can find a lot of good info and stories on the internet. Lyme disease even has a commercial. We’ve come a long way but there is still much more to come. Getting rid of Wormser was one good move and the story above in the photo where chronic Lyme is now not just something used by patients.

Over the years since starting this blog, an old Facebook page I no longer use and a social media account I have tried to helped as many as I can by sharing my story. I would have never thought I would have saved around 6 lives from suicide over the years as well. People would reach out to me in dark times and I helped them through it until I knew mentally they were much better and most moved on with their lives and are happily married now. That’s a great feeling to know because of my support someone didn’t give up on life.

I’ve received countless private messages from strangers thanking me for helping them although I never knew I was. People that said one of my positive quotes reached them at the right time or my illness journey helped get them through theirs. That kind of thing really makes you feel good inside & I’m thankful & proud to all who reached out to me. I shed many tears over their letters. I remember a few started with “you don’t know me & I never comment to you or anyone but I just want to thank you for helping me get through these tough times”. Some I never heard from again just the one message but that one message is what keeps me doing what I do on social media. I’ve said I would be content even reaching or helping one person on this journey but I never thought I helped so many & it’s really a humbling experience & I wish I could meet them all & hug them.

There are pros & cons as I too have ran into evil people who could care less about anyone. I had a so called friend who said he supported me for 4 years. Then I come to find out behind my back he was posting videos mocking me, making fun of my surgery, illnesses, struggles & telling everyone I have “AIDS & cancer”. He tries to sabotage my social media page, he thinks anyone who is chronically ill is “better off dead” & we all just want sympathy not support. There are many others as well. You can say “I have cognitive issues so bare with me I might spell wrong or say something wrong” then you post something & they comment “you idiot you spelled that wrong you’re so pathetic”. If only they knew what we were going through daily but this generation seems to want to find errors to make everyone feel stupid or mock everyone. I’ve seen comments to someone with cancer “hurry and die”. So just do your best to ignore those kind of soulless people & keep being you & sharing your story regardless of a few rotten apples. You never know who you are inspiring.

I’m still waiting on two more opinions for my major neck surgery. My primary says “NO WAY DON’T DO IT, neuro issues, immunodeficiency issues risks are too high” while my neurologist says “get it done ASAP or risk death or being paralyzed from the neck down”. It’s a catch 22 medical issue so I’m damned if I do and damned if I don’t it’s only a matter of time/when it happens naturally or surgically. So that is heavy on my mind at night. Death and quadriplegic aren’t the best two options but there is a good chance I may clean up the spinal cord & get that one issue out of the way. It won’t make my quality of life much better but at least I don’t have to worry about each day waking up & not being able to walk or hitting my neck & risking paralyzes or death. Most people I know who had this surgery or issue are no longer alive so that’s what makes this hard for me on what to do.

My hypertension has been better since losartan daily and I, not passing out every time I stand up anymore. My Lyme is still active but I’m still doing the maintenance dose as needed of antibiotics. My CFS is acting up so I’m sleeping a good 14-16 hours a day. I still spend all my days and nights in bed or on the couch watching tv so nothing really changed since last post. But what has changed are the illnesses in the media like the two I will post below. For those that I haven’t talked to on here in a long time, I think of you all and wish you all the very best. Hang in there we can do this!

Thank You! Wormser is OUT!! 

10 Dec

Thank you to all who signed the petition and got Wormser out. This guy has been an extra pain to the Lyme community for years. As you know I’ve been on antibiotics for 6+ years and holistic, homeo, naturopath, herbal, western medicine, rife….etc and my last Lyme test came back “very active” and positive after all those years of antibiotics yet they claim 10 days of antibiotics and you should be “cured” although Lyme could possibly go into remission not cured. Most don’t get their Lyme into remission and have late stage Lyme or chronic Lyme disease and nothing can stop it or make us feel any better. It’s not “daily aches and pains” as “Doctor” Wormser says! I’m sure those of us suffering know the huge differences in daily pains and the hell we go through. 


Update: MRI Results, C-Spine Stenosis Surgery Needed 

17 Oct

MRI Results

Sorry I haven’t been active for a while. I lost a couple relatives since my last post, been sicker, and things have been hectic. We had the California fires breaking out and took in some family as fires broke out near us but we are all safe. My fevers have been higher, I’ve been very tired and things have been worse than my normal worse. Let me just say this MRI was very painful and I was crying and shaking bad. I have seizures where I can’t help but moving or jerking so to try and stay still and laying on that hard surface with my bad back it was pure terror. 
I posted about my spinal issues over the years and older MRI results. My new neurologist wanted me to get an update to see if things were worse. I lost the ability to walk a few years ago but regained the ability to walk. I have herniated, bulging, exploded discs, degenerative disc disease, cysts on my spine and spinal stenosis. Well the results weren’t good. My Primary Doctor saw them first and he cringed and said “ouch” a lot and told me he couldn’t continue to read the results because they were too much and my Neuro would be better at explaining them. 

I saw my neurologist today and he said “interesting”. But he says I need surgery no doubt and as soon as possible or I will be quadriplegic (lose feeling from the neck down). My spinal cord is being crushed in a few spots on my c-spine and lumbar spine but they need to fix the c-spine in C4-5 right away. I’m losing fluid around the cord and it’s being flattened so I’m hyper sensitive in my legs and losing feeling as well. One good fall and I could be paralyzed or dead. My friends dad had stenosis he didn’t know about, fell off a small set of stairs, was paralyzed from the neck down and passed weeks later. My doctor doesn’t want that to happen to me. 

So I will be seeing Neuro surgeon numbers 2 and 3 one here in town and one at UCSF to get many opinions. I have about 4 or 5 neurologists and 3 Neuro surgeons now and some said to wait fir surgery years ago but now with the bad news they may all agree on surgery. My case is difficult because of my primary immunodeficiency, auto immune, MTHFR double mutation, lupus…etc so my risk of death is higher than the normal person and my risk of infection is very high since I’ve been on every antibiotic I may be tolerant to all. So the surgery was delayed all these years due to the high risks but now it looks like I’m having surgery very soon. I’ve dreaded this day for years. 

My poor mom is getting foot surgery in two weeks so this will be hard with just my parents and I and taking care of my niece. Plus having to drive 3-4 hours to UCSF while I puke all down the freeway won’t be fun. I get car sick very easy. I just got to stay strong and push through this like I always do. My Medi-Cal (Medicaid) was denied because of many errors the county made and then put the blame on the patient so I recently paid a surgery bill and can’t imagine how big this surgery bill will be! Wish me luck. I hope you all are doing better or finding good health care. Hang in there.!

Loop Recorder Caught an “Event” 

10 Jul

On the 4th of July I was having the usual stabbing chest pains and my heart was pounding hard. I pressed the button on my loop recorder to send the event to my doctor. I went to my appointment the next day and the doctor said it looked as though I had got up and ran a marathon. The problem was I was laying in my chair Under my blanket that night. No fireworks were going off outside so I wasn’t startled. I was very clam, watching tv. The rep from the loop recorder company said that event didn’t look good and my cardiologist said if we catch one again I need to go back on heart medication with my blood pressure medication. She doesn’t like that my heart randomly acts up and goes high when I already have hypertension (since I was 13 years old). The losartan is keeping my BP near but above “normal” usually 140/91 area. Still checking for arythmia. For those new to my blog I nearly had a stroke and heart attack last summer and was asked to move back with my parents. My aunt recently passed away so it’s been tough. 
Hang in there everyone, things will get better. 

Had My Procedure/Minor Surgey For A Heart Loop Recorder 

15 Jun

Heart Loop Recorder 

Yesterday I had my procedure/minor surgery to insert my new loop recorder (ECG). There were a few things that nearly went wrong but it was a very easy procedure. If anyone is getting one maybe this will help. 

I had the old school heart monitors before like the hotter top and ones with wores everywhere and months ago I got the Zio patch for a few weeks. The issue was with the Zio is that I had the bad episode right after it was removed so it didn’t catch anything. So my cardiologist wanted a longer term heart monitor which this Reveal Linq loop recorder is an ECG that constantly records your heart and send the data to my cardiologist via wifi. So she will know the moment I have arythmia or pass out ….etc. Agaim this isn’t the POTS fainting episodes where I stand up, pass out and wake back up. These are 45 minute long episodes where I become incoherent, hear words backwards, can’t talk, have to lay down and still doesn’t fix the issue and I usually end up passed out and it takes 15 minutes to come back to “normal”. I turn gray and was told I looked like I was “dead” from witnesses. So it’s scary. 

This loop recorder will be in for 3 years and I hope it doesn’t catch anything bad but it would also be nice to know what’s going on. As far as the surgery part I will list detail below. 

The actual procedure/surgery takes about 3 hours due to all the prep time and paper work as it is treated like a major surgery and you sign forms. For makes they say e your chest and arm out areas. After that you get wheeled into the OR. It’s only a local lidocaine so you don’t need to be put under unless you can’t handle needles. The size of the needle is pretty large so they can get it into half of your chest. The recorder is implanted into the chest/boob/pect area. So you get the needle and being tolerant to most meds and lidocaine I was able to feel most of the needle sticks almost until the last one. I also felt the insertion of the device. I was told I would just feel tightness but I felt many details. But again like at the dentist it takes 3 shots for every 1 shot for a normal person in the mouth of lidocaine to numb me or I can feel the drill & major pain. So if you are good with lidocaine you should only feel a small pinch. 

They then make a small incision and use the tool above (like a gun) that shoots/injects the recorder into your chest. They then check to see if the recorder is working or talking to the doctor, device. After that they stitch you up or use derma bond (super glue). My blood is mysterious so one week I’m clotting and the next I can bleed out. I take blood thinners but when blood starts coming out of my ears I stop taking them for a while. With that said I have had a blood thinner or aspirin in months but I was bleeding out so the surgeon (my cardiologist) had to put pressure on the incision for a long period of time. Should only take like 5-10 minutes but took up me about 30 plus minutes due to the bleeding. They used derma bond on my instead of stitches and the nurse said the glue will be full of blood so don’t freak out lol. 

I’m pretty tolerant to normal pain so for me it doesn’t hurt very much. I’m doing great so far. Very easy fro, start to finsh. The sad part was someone passed away while I was there. If you are nervous about getting this done, it’s not bad and the reward outweighs the risk. 

Update: Heart Monitor Implant, Walking Pneumonia … 

3 Jun

Loop Recorder 

I’m getting my heart monitor known as a loop recorder procedure on June 14th. I had the 2 week Zio monitor recently but as soon as I took it off I had the episode. So this loop recorder will be implanted under my skin and record my heart for 3 years. We are hoping to catch any arythmia or abnormalities (or more like catch nothing). If there is no arythmia in the next 3 years my cardiologist says it’s more likely a neurological issue. The implant involves a shot of lidocaine to the chest area I believe and they cut a small incision and inject the loop recorder under the skin, near the heart. 

Walking Pneumnoia 

After suffering from a normal illness/lung infection for a week I suddenly had 104 fever and was hallucinating. I couldn’t talk, walk, see…. so my mom took me to a walk in prompt care where my doctor diagnosed me with what he thought was “bronchitis or walking pneumonia”. He gave me antibiotics but it was the family of abx that causes my restless leg syndrome to be much worse so I didn’t sleep for a week. He then switched me to Z-Pack (Zithromax) that was much better for my restless leg syndrome (RLS). I’m finally feeling a bit better getting the infection out of my lungs and no longer coughing or having low oxygen issues. For some reason at the doctors my Oxygen was going from 81%-86% which is crazy low but I think maybe the surgical mask I had on could have lowered my oxygen even worse? The walking pneumonia is getting better so back to my regular chronic illnesses and symptoms. The only difference I notice with the flu or pneumonia is the wet cough, colored phlegm, and higher fever than my usual daily fever. The other symptoms I already have daily so don’t really notice the change or notice when I am getting “normal people sick”. My temperature normally runs 94-95 degrees during the day and 100 degrees at night until usually 4-6am when I fall asleep. 

Neurologist Visit 

Saw my neurologist today. He wants to try and get me back on something for restless leg syndrome. I’ve tried many meds in the past like Lyrica but they made me gain weight and dizzier than usual. So I’m not sure which Med he’s giving me. He’s doing a sleep study on me soon with a pulseOx at home. I will also be getting more MRI updates on my C-Spine (neck), mid back and lumbar. He wants a brain scan but I just had one done two months ago. He’s trying to keep me from being “spastic”. So far the Keppra seems to be helping the myoclonic seizures. The heat of summer always makes me more exhausted than usual or dizzy so I just want to sleep all day. Lupus and the sun don’t mix so I don’t usually go out back I just stay on the couch or in bed. 
Hopefully things will start to get better. Like usual whe it rains it pours around our house. A lot of bad things going on and just trying to stay positive. Got to keep in mind it can be worse. Keep up the fight everyone!