Local Pizza Place Helps a Family in Need

What a surprise this was to our family when we learned that Peter Soltesz at Joe's New Your Pizza had offered our family dinner and a chance to get out and forget about Lyme for just a bit.  I have to say that it is tough for me to go anywhere.  I must reserve my energy before and most of the times after I am still out for the next day or two.  This evening was perfect!!!  Well, almost.   I want so badly to forget about Lyme.  It is hard to when I am not always feeling up to it...  Watch the video and see what I mean.  I really had no idea they were filming me when this happened and to see it from outside looks scary.  Going through it is not easy and to think I used to be like this a lot.  I have been on treatments here in town but it is not enough.  Getting more extensive treatments won't cure my Lyme disease but it should give me many more years in between.  Knowing I may have to do the extensive treatments at all is tough to think of, but I have to.  I won't give up and let this slowly take my life from me.

Anyhow, enjoy the video and please share it!!

Frustration and Lyme

I just took my daughter to school and I am back in bed.  I am loosing my spoons.  The last two weeks have been one crazy roller coaster ride.  Even though I am off my IV antibiotics this oral Doxycycline is the pits.  It seems to be doing the job of killing the bacteria because I am herxing worse.  I take it twice a day and for some reason I feel toxic 24/7. 

I am so frustrated lately.  Today is one of those bucket is overflowing, but not of grateful things.  I want my old life back.  I want my old self back. 

 

I attended a funeral Monday night and I couldn't help think that I am still alive and should be thankful for that.  My Lyme was caught, diagnosed and treated before it could do further damage.  I should be grateful...  I am, its just hard to keep up the positive- I can overcome this- attitude when I feel like this nonstop.

This past Sunday my beautiful primary children at church had a presentation where they shared what they have been taught all year.  I skipped my treatments the night before and morning of so I wouldn't be so fatigue.  It helped a bit and I pushed through the day.  I was actually quite proud of myself! 

...............

(I just paused to think of something and fell asleep!)

I just woke up at 1pm.  I never took the boys to school.  Couldn't wake up to do it.  My whole body hurts and my limbs have been numb for almost an hour.  My chest is in pain and feels like its being crushed.  I thankfully can walk today but hurt all over.  I can barely eat and feel so sick.  My head is going to explode and my ears hurt so bad.

I was warned that the cooler weather would bring symptoms back for my rheumatoid arthritis...  Yea.

Emotionally I am struggling.  I have to admit, it is hard to be strong...  I do it for the kids and for myself.  I have a lot of responsibilities and I can't give up.  Some days are good but most are bad.  Today is very rough and when emotionally you don't feel strong enough it makes it a million times harder. 

I am so frustrated!!  I don't know how I am ever going to overcome this if I can't see a doctor out side of Vegas.  A friend of mine's daughter has Lyme and sees the same doctor as me.  They are a few steps ahead and are also looking out of state.  Band-aid approaches are not the answer.  Lyme is taking our quality of life away.  I have little family life, very little socialization with friends, (if any @ church,) and really no life of my own at all.  I use all my "spoons" to my responsibilities and leave none for me.  Its driving me crazy!

I am completely sure that on Mother's day this year I lost a friend already from texting while on heavy pain meds...  They should put a warning on prescription bottles!!  And who knows how many others think I have abandoned them or gave up on our friendships...  This is not the case.  My mind is degrading and my body wins most of the time and I shut down.

I just keep praying, and crying out to the Lord to help me find the answers I need or to help me raise enough money to get treated properly.  If I didn't know I had Lyme disease I would be in the hospital right now...  But its pointless.  They can't do anything for it that I'm not already doing or they don't know how to treat it. 

I feel useless, pointless, a huge burden to my family and feel like if it weren't for my kids I would have given up a long time ago. 

This is a hard battle.  So very hard.  To have to be strong emotionally every day.  Just to get my kids off to school every morning makes me drained for hours.

I was a very busy body and loved to work outside on my yard.  I used to be a very active stay home mom and played so much with my kids.  Now I curl my daughter's hair and I have to nap for 3 hours.  Today I took a shower AND took my daughter to school...  That drained me and I ended up not taking the boys to school because I passed out until 1pm. 

I want so bad to go on a road trip with my family to forget it all.  I want to hike, swim, window shop, have girls nights out, play a sport, play with my kids, attend more than just Sunday church meetings, to have a real date night with my hubby, to be able to do house work with out it knocking me down for hours.  I am so frustrated.

I will keep on going, hoping for a funding miracle...  A cure would be nice but we all know how that is.  I have to say that I am thankful that so far I have been able to give advice to at least 4 others about Lyme disease.  It is great to know that I can still help others.  It gives me another purpose for all of this.  I was diagnosed with Celiac's disease 15 years ago...  I vowed to help others with it.  I was diagnosed a few years ago with clinical depression...  I vowed to help others but have not been as vocal.  Now that I have Lyme and know it could be the cause of my clinical depression...  I am not going to be quiet any more.  I am an extreme introvert and am happy to be at home in my own little world.  So all of this Lyme awareness is a new venture for me.  To be out in the public I have only one desire, (ok, two, besides wanting better treatment,) is to help others.  The more we can help each other the better.  It is how I can be an instrument in the Lords hands through this ravishing disease.  

Doxycycline

Finally brave enough to start my second part of treatments.  Doxycycline twice a day.  Let's kill us some Lyme!

A break from Rocephin & plans for at home therapy

Monday's appointment went very well...  We decided to maintain my PICC line this week and see how I do off of the meds.  We will then talk about my plan for the next week on Tuesday once my blood work is in.  I am hoping for the best.  All though there is no way to know how much Lyme is hiding, (inter-cellular, cystic form, or in a bio-film community,) We must go off of symptoms, my blood work and the condition of my immune system.  If I am taken off everything I would just be on the look out for a flare up and will have to do the PICC line and IV's all over again.  It's a tough call.

Bryan and I are looking at other options to maintain my Lyme at home. There are many ways to continually attack the bacteria.  One is through using various herbs and oils.  Another, (and can go along with the previous,) is using a Rife machine.  With either choice you will need a detoxifying set up through an Ozone Steam Sauna.  Which if I had at home during my IV Rocephin treatments I would have been better off.... (Which was was what Envita had!!!)

Let me explain some of the things I just mentioned.

Rife Machine - Rife machine therapy works by generating resonating or sound frequencies specific to each disease-causing microorganism, at an intensity that causes its cells to disintegrate. The resonating Rife frequencies enter the body through electrodes designed for the feet, hands or through electrodes placed on specific locations on the body.  Setting the frequency specific to Lyme bacteria will assist in die off.


(Steam Sauna And Ozone Set Up)

Hyperthermic Chamber Steam Sauna Cabinet - A hyperthermic chamber is an enclosed box that you sit inside. Your head, however, stays outside. This allows you to tolerate a higher temp longer because your head is outside, and you are breathing cool room air. Steam is produced inside to increase the temperature anywhere from 90 degrees all the way up to 130 degrees.

Ozone Generator - Turns O2 into O3 or Ozone.  What does it do?

*Ozone Increases Oxygenation of your Cells (it has been proven that cancer and disease grow in poorly oxygenated tissues in your body).
*Ozone Modulcates your Immune System (for those with a weakened immune system, Ozone will boost the immune system. For those with Auto-Immune Disorders, Ozone will modulate the immune system to help to stop it from attacking healthy human cells.)
*Ozone Increases Energy Production in your Cells (your cells need energy to be healthy; low energy levels mean that you and your cells will not be healthy and will age)
*Ozone Increases the Activity of your "Anti-Oxidant Enzyme Systems". This means ozone will reduce the oxidation levels of your body.
*Ozone Reduces the level of acidity of your body (never mind the Alkaline Water...use Ozone!)
*Ozone kills Bacteria, Viruses (and virtually all other disease causing organisms) on contact

Oxygen Concentrator - Oxygen concentrators filter out other gases in the air and store only oxygen. 


The Benefits of Steam Sauna and Ozone

The use of a sauna should be an important part of any detoxification program. The sauna increases the eliminative, detoxifying and cleansing capacity of the skin by stimulation of the sweat glands and also promotes healthy skin tone and texture due to increased blood circulation. Using the steam sauna with ozone allows the steam to surround the body and ozone can be introduced through the skin. Humid heat opens the pores, which allows the ozone through the skin to the bloodstream, where it can travel to the fat and lymph tissue. It is very important to cleanse the lymph tissue of toxins and the ozone/steam sauna is the easiest and best way to accomplish this.

Artificially induced hyperthermia (rising body temperature results in the destruction of bacteria and viruses) combined with heavy sweating and a cleansing effect initiated by ozone will result in elimination of toxins accumulated mainly in the lymphatic system relieving the liver from the difficult task of dealing with them. Through the centuries, men and women have used steam to purify the skin, soothe sore muscles, boost circulation and to simply relax. The combined action of moist heat and ozone cleanse the lymphatic system, which carries 90% of the body's fluids. Ozone brings oxygen to the tissues for enhanced health and vitality. The combination of steam and ozone is a natural, effective way to promote a refreshing sense of well-being. We believe that a an Ozone/Steam Sauna cabinet represents a pleasant and easy to follow form of body cleansing.

Benefits of ozone sauna: 

*Relaxes and loosens muscles by reducing the buildup of lactic acid and increasing muscle flexibility.
*Oxidizes toxins so they can be eliminated through the skin, lungs, kidneys and colon.
*Boosts blood circulation, helping injured muscles to repair quicker.
*Stimulates vasodilatation of peripheral blood vessels relieving pain and speeding the healing process.
*Eliminates bacterial and viral infections of all kinds.
*Speeds up the metabolic processes of the inner organs and endocrine glands resulting in a loss of 200-450 calories in a 20 minute session.

Newest research shows steam hyperthermia an effective treatment for: 

* Detoxification programs
* Immune system deficiencies
* Pain management
* Cancer
* Arthritis
* Stress and muscle tension
* Increasing body metabolism
* Elimination of toxins
* Blood circulation

WELL!!!  That was a lot of info...  But now you know why these things are on my "wish list" on my site:

http://www.gofundme.com/MelissaSeverance

I will use these to help my body's immune system stay on top of the Lyme bacteria and to help me live a fuller life with my family and friends. Either way having this in the home for daily therapy is very beneficial and easier than going to a clinic every day.  If my Lyme flare ups are too severe then I can go back and try the antibiotics again...  Only time will tell.  

6 weeks in...

Today makes it 6 weeks.  I should be happy.  But I feel horrible...  again.  The last two weeks were so much better!  Then BAM!  Back to how I felt before treatments...  NO, it's even worse.  I'm not even on the Tindamax right now.  This is ridiculous.

Monday I met with the Doctor's PA, Stephanie.  She is great.  I really love her.  We went over test results.  Only one thing changed from the previous week...  My white blood cells are dropping.  I can only be on the Rocephin another week and will have to give my body a break.  I will infuse next Monday and will just maintain my PICC line at home for a week.  Then we can see if I have any flare ups and can decide what path to take next.

I have been trying to put together something for my fundraiser but my brain is not cooperating.  I cannot function and the pain is unreal.  I am trying to focus on breathing while listening to soothing music.  I am not sleeping well again.  My appetite is shot.  I really want to give up or crawl in a hole and give in.  I know I won't...  Just having a moment of weakness.

My kids have been home from school sick.  All of them.  We are having problems in this house and for some reason our family has never been sicker than the 2 years we have lived here.  I think it is either in the air ducts or we have another rodent issue.  It's embarrassing to me to think maybe some of this could have been prevented if I was just well enough to do something about it... or maybe not.  My house is a disaster, the children run wild, (when they're not sick,) and nothing is in order.  It's too much for me right now.

Anyhow, It's taking me too long to type this.  I need to go lay down if I'm going to keep this broth down.  I feel like I'm about to pass a kidney stone again...  Lovely.

Problem solved... Sort of.

After infusing today I stopped by the front office to ask about my prescription refill for Tindamax or if I was going to need something else.  The lady's response was...  Dr. Shah said you don't need it anymore.  

I didn't know what to say. 

All I could think of was that I am still herxing....  Which means it is still killing the Lyme.  Taking me off slows the treatment.  So I guess I'm on a break until Monday when I can meet with Stephanie.

Tomorrow morning is my last day to take the remaining pills I have and then I wait...

Week 5 done.  Starting week 6 tomorrow...  I bet anything they stop my treatments Monday and say that is all he can provide for me...  Because of the CDC.

I wish I had the $7,000 per week to go to Envita...  Or some place like there. 

My immune system is still shot, I'm still herxing, and still have a lot of Lyme symptoms.

Grrrrr...  I'm going to take a nap.  My head and joints are not liking my today.

Never ending herxing

I really am horrible at detoxing.  All these little buggers we are trying to kill are dying off and releasing all of their toxins at once.  It's too much for my body to handle. 

If I had been at Envita I would have been on a great detox regimen.  I need to figure this out before I go crazy from the herxing.

I hold it together for my kids and my family.  At this point I'm so tired of missing out.  All my responsibilities are still in need of my attention.  It takes 10 times longer to do anything but I try.

Just wish I could think straight...

Spiritual promptings

Three entries in one day! 

As I am lying here at almost 11pm, I can't help but feel a bit down from how hard today was to bare.  I had to skip my presidency meeting.  It really was an emotional time for me.  I am so excited to get back to something normal again.  Even when I discontinue the IV meds I will still have to take it one day at a time to bring my activity back to what it used to be. 

I still have to have my sinus polyps removed and that's another week to two weeks rest.  I cannot have the surgery until my immune system is stable and I am a lot stronger.  I may wait until after my birthday in October so I can have a break.  My ENT said to me back in January to keep looking into why I'm sick but to not wait longer than 3 months before I have them removed...  Well, that wasn't possible.  So hopefully they haven't grown.  We are about 90% sure they will be benign.  Either way, a biopsy will be performed before the surgery... Both requiring me to go under anesthesia in the hospital.  My immune system must be be strong enough for the recovery.  Also, all areas of the head, especially the nose/sinus region are major bleeders.  That's why I must be better, especially with a low white, red and platelet count. 

So, back to me having an emotionally hard time today.  It was the hardest missing our meeting.  It is SO frustrating not being able to go.  I want to be there very badly.  I know I have an amazing group of sisters in the primary with me and are running the show while I am gone.  They are amazing.  I am truly thankful to each one...  I am inspired, blessed, and feel the love each one has for their calling.  I am nothing as a president without them. 

As I lay in my bed, wishing I was there at the chapel instead of here in pain...  I said a little sobby heart-felt prayer.  Nothing big or formal, just a plead to Heavenly Father.  I really needed cheering up.  All I asked for was that my great friend stop by after the meeting to say hi.

After I pleaded this I was swept up in mommy duties, (which was basically me telling my younger two to stop being loud and playing on my bed since it was making things worse for me,) and never thought to call her to ask to come see me.

My husband was picking up the older two from their church activities and they always beat daddy to the door, knocking on the window.  I hear a knock and tell my younger two to let in their brother and sister.  My daughter yells out, "Mom!  It's your meeting!"  I'm thinking she is crazy and I ask her who is it.  She repeats her original response and I then say it must  e someone from the meeting or from church.  Thankfully it was because one of my two opened the door.  (Yikes!)

It was a prayer answered!  There from my bed I could hear my friends voice!  I couldn't believe it!  I yelled out for her to come into the bedroom.  During our conversation she told me that she had drove toward here but didn't have anything to bring me so she kept going past.  She aslo expanded that something made her turn around and stop by anyway....  (can you see the tears in my eyes right now!)

I am thankful for so many blessings in our lives.  More importantly I am blessed that I have so many friends who act upon the small promptings of the spirit.  We all are truly instrumental is Gods work and are one way God answers our prayers.  This prayer was small but big to me.  Very big. 
I pray that I may always live my life that I may be in tune to the promptings of the spirit so I may help answer the prayers of His children.  He truly does hear us!

Herxing

I hurt.  I hurt, hurt, hurt.  My body is finally herxing to the max and I am taking it one breath at a time.

Sounds are hard to bare.  Lights are too bright.  Air conditioner hurts my ears but I'm overheated and need the cool air.

I ache...  Everywhere.  My knees, ankles elbows, shoulders, hips....  Hurt SO much.

My fingers ache.  My back and neck are stiff and my muscles are knotted everywhere. 

My head is pounding and I cannot type this fast enough to document so I can sleep. 

I will do a video but wanted to journal my experience.