Humira – My Autoimmune Benefits, Side Effects, and Results

As discussed in my previous post about Iritis, I’ve had enough of playing the chronic inflammation game and wanted my life back.  I discussed this over with my Rheumatologist and we both agreed that Humira would be my choice of biologic medication. Not only would Humira block my chronic inflammation, but it is FDA approved to treat Crohn’s disease – one of my root causes.  To recap, let’s look over my rates / percentages of health since I got off Enbrel for good on February 7th 2012:

Rate of My SED and CRP Rates of Inflammation

My SED and CRP Rates of Inflammation from Dec. 2011 – Dec. 2013 (2 Years).  Note the normal rates for both are under 15.

  • 10-20% Health – Mid-March 2012:  Enbrel out of system, could barely tie my own shoes.  Life unbearable at times, but parents lovingly got me through as my body was slowly healing.  Many symptoms developed at this time.  Rates of Inflammation:  CRP spiked from 9 in Dec. 2011 to 142.8.  SED rate at 101.
  • 20-40% Health – July 2012:  Eating and learning to cook a healthier lifestyle improved my condition, but times still unbearable and started a regimen of ibuprofen to function in my daily life.  Started many tests to determine root causes of my issues.
  • 40-50% Health with Bursts:  December 2012 – Found major root causes from the tests I took.  Symptoms / issues pointed to Crohn’s Disease / IBS / Ulcerative Colitis (Which might have developed due to the ibuprofen I was taking – Mayo Clinic states:  “Don’t use ibuprofen (Advil, Motrin, others), naproxen (Aleve) or aspirin. These are likely to make your symptoms worse.”).  My bursts were coming from taking Prednisone (hard to sleep taking this) and going off ibuprofen.
  • 40-60% Health: April 2013Detoxification off of meds and supplements.
  • 30 – 50% Health:  June – Early September 2013:  Recommendations from an autoimmune specialist put me on a new set of supplements and tests.  Although I reverted back to my lowest points in 2013 (I needed other people to help drive me to places and did not leave the house sometimes for a weeks), I did find root issues:  Mold / fungus in my house, oxidative stress, and leaky gut syndrome (nutrition dysfunction).  Taking medications helped the root cause, but made my system weak.  Supplementation either had little help or was harmful.
  • 50 – 70% Health – Mid-Late September 2013: Introduction of Low Dose Naltrexone (LDN).  With low cost and minimal side effects, LDN boosted my health around 20% + getting off all the “fixing the root cause” medication & supplements.
  • 70 – 85% Health – November / December 2013:  Along with the Low Dose Naltrexone (LDN), I started taking Humira due to my Iritis attack.  Within the 1st 3 days after Humira I saw significant consistent improvement.  Increasing weight along with exercise / Yoga has continued to increase my health.  In December, back to a “normal” weight, Iron levels back to normal (no anemia), and have more energy than I ever had in my 30s.  Rates of Inflammation:  CRP rate at 3.3 (better than when I was on Enbrel and had a CRP of 9.5) and SED rate of 4 (review latest test).

What is Humira?

With autoimmune diseases, your body produces too much of a protein called TNF.  This TNF then triggers an inflammation response that goes throughout the body.  Humira is designed to block the receptors that hold TNF as explained in this video.

humira-pen-figure-a-pen-image

Humira is used by injecting the grey cap (Cap #1) into your skin (I inject into my thigh) once every 2 weeks.  Since Crohn’s disease deals with the digestive system, the Humira injection does not interfere like a pill would.

My Humira Results

If you examine my comprehensive autoimmune blood tests, look for the results of my SED rate and CRP (C-Reactive Protein) – they are both markers of inflammation.  Normal ranges for SED rate are 0-15 and CRP are 0 – 4.9.  In April 2012, my SED rate was 101 and CRP was 142.8; abnormal and dangerously high.  After taking Humira, Low Dose Naltrexone (LDN) and all that I’ve learned throughout my journey, my comprehensive autoimmune blood test in mid-November shows a SED rate of 4 and a CRP rate of 3.3; a vast improvement.

Here is an update on autoimmune symptoms listed in my last post about Iritis:

  • My weight on 12-13-13

    My current weight of 134.5 lbs. on 12-13-13 (Wii Fit Plus).

  • Continued to lose weight and at my lowest was 116 pounds (originally 158 lbs.)
    My weight starting Humira was 116 lbs. and has increased to 134.5 lbs (roughly 1 1/2 months time).
  • Continued nutrient malabsorption Current increase in weight and ability to eat foods I could not before prove I am absorbing food.
  • Fatigue / Anemia (usually sleeping twice a day & needing 10+ hours of sleep / day) I no longer need to take naps and 8 hours a night of sleep is typical (most of the time without the need to get up in the middle of the night).  Review my Iron Level tests prior to taking Humira and after taking Humira.
  • Sitting in chair too long makes my body very stiff.  I can sit in the chair for hours although my back gets 2-3 out of 10 in stiffness…I can live with that!
  • Stools loose.  No problem now, I can poop like a champ!
  • Very hard to squat down or bend over (can’t really do this unless I assist with holding onto something) to pick something up.  I can now do a Sun Salutation in Yoga, and I can bend over and pick things up off the floor.
  • Flare-ups from foods, sometime even safe foods.  No flare-ups because the Humira blocks the receptors that cause the inflammation (but the process still happens).  I still avoid the foods that caused me to flare up the most – breads, grains & flour mainly.
  • Get cold quickly along with poor circulation & purple fingers (Raynaud’s Syndrome) – I still get this, but less noticeable.
  • Weak body: Need a rope to get out of bed, can only go to the pool for 10 minutes, no gym workouts, etc.  On 12/4 was my 1st major (45 minute) workout on my chest, biceps & triceps.  I can now go dancing for hours and walk around the block with no issues.  Driving is also so much easier.  Did I mention that I removed the rope from my bed (it was the only way I could get out of bed for more than a year) a few weeks ago?  That was a great moment.
  • But the last and final straw was developing Iritis on 10/9/13.  6 Ophthalmologist visits over 1 1/2 month span (1 month of which my right eye was dilated the entire time), it’s all cleared up.  The medicine made my condition much better after the 1st day.

Humira Side Effects

Humira, like all biologic medications, can have serious (even deadly) side effects caused by fungus, bacteria, and virus infections.  Liver infections and psoriasis has also showed up in patients taking Humira.  My symptoms include increase sneezing and my ability to fight infections.  The LDN & eating a healthy lifestyle help my immune system and could have a better chance at fighting infections.  Finally, and I know this might sound strange, is that I have to adjust to my new level of energy.  It’s hard to go to sleep because I don’t feel like I need to (but when I lie down for 10 minutes I do sleep – kind of feel like a kid again).  When I wake up, I’m up and need to do activities if I wake up too early.

Future Plans – Finding the Autoimmune Root Cause

Conclusion

Two words:  “I’m back!”

Thank you to those who have continued to pray for me.  Please focus your prayers on having me find my root cause(s) and for the other millions of people to find their root cause(s) of inflammation.


Diary – Getting Back on Humira

Since most of the major gains were made in the first week, I will only supply a daily diary for the first seven (7) days and then a weekly diary afterwards.

10/25 – Bed at 10:30pm, up at 4:30am and then 7:15am.  Slept from 9-10am and rested from 1-2pm.  Woke up stiff & sore due to all the work I’m doing, doctors, insurance, etc.  Same old routine with the right foot, left elbow, back & shoulders along with the right eye cloudy from the meds.  I began taking Humira in the morning with the pen instead of taking with the syringe like I used to with Enbrel and it’s much easier to administer plus I only have to take one time every two weeks.  I was finally able to start my mini-vacation at 6pm (which is just the weekend + a little on Monday) by traveling up to Venice (1st time since March).  One great steak dinner & some Chardonnay later & I was beyond exhausted by 7pm…but very happy to be with my parents and George.
10/26 – Bed at 10:30pm, up at 4:45am, then 7:30am.  Napped from 3-4:30pm.  Noticeable areas of pain / stiffness are right foot, neck, low back & cloudiness in right eye due to meds. 1st day after taking Humira and I can already start to see the effects of the medication.  I feel less stiff when I woke up and my Yoga was easier to do in the morning.  I had a full sleep from 10:30pm – 4:45am & then it was on & off as usual.   Where it started to really shine was I could walk at the Ringling Museum for 2-3 hours.  And for lunch I had fries along with a Colada & grilled fish.  Normally this would flare me up, but it didn’t.  But I could notice my stomach not feeling so good for a few hours after that lunch.  By the afternoon I was exhausted but felt better after getting up.  Fajitas and margaritas in the evening with fringe foods with no flare-up and my stomach felt fine afterwards.  Lower back still stiff & hurting if I stay in a chair too long.  Shoulders / neck / mid-back OK throughout day but my sides (front rib areas) hurt a bit.
10/27 – Bed at 11:15pm, up at 5:15am and then 8am.  Napped from 11:30 – 1pm.  For 1 1/2 years, I dreamed of what arrived today. Woke up much easier and my pain & stiffness is much less.  Neck still limited left & right, but better up & down motion.  Right eye cloudy due to meds.  Went to the cold pool and hot tub (Russian bath style but not as bad as this) at 9:30am for 20 minutes.  Drove back to Naples, cooked dinner for me & three friends & no flare-ups.  Prior to taking LDN, I could not do it.  While on LDN alone, I could do it, but would need help from my friends to cook / clean while I rested.  Today, no problem.
10/28 – Bed at 11:15pm, up at 1pm, then 6:30am, then 8:30am.  Tried to nap in the afternoon but too much to do & phone calls.  Neck range same as yesterday + shoulders & low-back a bit stiff.  Right eye cloudy with meds, right foot inflamed & hips hurt.  I can now get out of my own bed without using the rope!  In the morning was able to do a Plank for 30 seconds and got up much easier than I did trying this on 9/29.  Bending down to put dishes away is better but still cannot pick stuff off the floor.  Dressing myself takes much less time and is easier to do (feels kind of like a joke now to do).  10:30am walked around the entire neighborhood block for the first time in over a year.  6:15pm walked down the end of the street and took 15 minutes, not 20 minutes like before.
10/29 – Bed at 11pm, up at 6:30am.  Napped from 2:30pm – 3:30pm.  1st time I didn’t get up in the middle of the night.  Looks like my adrenals are getting back to normal now.  Noticeable areas are right eye (meds), right foot but better than yesterday.  8:30pm walked down the street for 15 minutes.  Lower back sore in the evening (probably due to plank yesterday).
10/30 – Bed at 11:15pm, up at 6:15am & napped from 3-4pm.  Waking up with low back stiffness at 3 out of 10.  Neck is still 4 out of 10 left to right & 3 out of 10 up & down.  My stools have pretty much normalized at this point and my weight is now 119 1/2 lbs.  I seem to gain a little over 1/2 lb. each day since taking the meds.  8am and & 6pm walked down the end of the road.
10/31 – Bed at 11:45pm, up at 2am, then 8:15am.  Napped from 1:30pm – 3:15pm.  Shoulder blades, neck movement from side to side, and right eye cloudiness / light sensitive (due to medication) are the main issues;  minor stiffness throughout & low-back pain.  Today I helped out some kids for Halloween and was able to hold onto bags of candy for a long time along with a 2 hour walk.  Stayed out past midnight without issue.
Week 2 (11/1 – 11/7) – Sleep continues to be getting up 1-2 times per night along with mid-day naps for most days.  Noticeable issues throughout the week include pain / stiffness in shoulder blades, neck movement from side to side, and right eye cloudiness / light sensitive (due to medication).  I took a few walks in the evening and was able to travel to multiple stores without issue until the end of the week when I started to develop pain in my right hip.  Sleep was also becoming an issue (developed nightmares on 11/2) as I started working 12+ hour days for my company CGschool (setting up events in Boston & San Francisco).  Back was also stiffer as it progressed to the evening due to all the sitting & work I had to do.  Without the Humira, none of this would have been possible.
Week 3 (11/8 – 11/14) – Sleep continues to be getting up 1-2 times per night  along with mid-day naps for most days.  Beginning of the week, the right hip was worse (went from 2 out of 10 to 6-7 out of 10 on pain scale) and was due to the workload / sitting too long / walking too far at night / new exercises I would try on the Wii Fit (especially ones balancing on one leg).  Other noticeable issues throughout the week include neck stiffness from side to side, some shoulder blade pain (probably due to exercises and sitting too long in the chair) and right eye cloudiness / light sensitive (due to medication).  Stomach issues arose in the early week due to gas & trying fringe foods (dairy, crackers).  When I started Humira, I was at 116 lbs.  Now I am up to 124.5 lbs. (+8 lbs.).  11/8 was a long day & had to fix a major issue for CGschool (was up until 2am).  Weekend ate at Roy’s with no issue as they were very accommodating to my food sensitivities.  Mid-back continued to hurt along with hip & knew I had to go to the pool.  Did a hard workout on 11/10 in the pool (as I need to build strength) which helped my hip heal itself throughout the week.  As a side note, if I did not take Humira, my pain would be a 9 out of 10 at this point.  End of week was getting better as my responsibilities were getting less – still  needed to do 12 hour days for San Francisco class.
Week 4 (11/15 – 11/21) – Sleep continues to be getting up once per night  along with mid-day naps for most days.  Hips bad in beginning of week healed up mid-end of week (as long as I didn’t do anything to stand on one leg like Yoga exercises or getting my pants on one leg at a time).  Right eye continued to get better and 11/19 Opthamologist gave me the OK to stop the meds altogether on 11/24.  Range of neck motion getting better but still noticeable and some stiffness in the back through mid-week.  Travelling around town again was easy to do.  Workouts once at the pool (11/16), Wii Fit 1-minute planks worked and started push-ups / side planks on 11/19 (failed at 5th & 6th rep), started downward dog Yoga pose on 11/22, and walked most evenings.
Week 5 (11/22 – 11/28) – Sleep continues to be getting up once per night  along with mid-day naps for most days.  As I continue to get stronger, I still feel noticeable pains (probably due to workouts) in the shoulder blades, neck, and back (2-3 out of 10); right hip continues to be fine.  My right eye cleared up by 11/25 and my weight is now 128 lbs (+4 lbs. from 2 weeks ago).  Starting to get harder to go to sleep due to increased levels of energy (my body was so used to being with so little energy before).  Went ballroom dancing 11/24 and felt in right hip again, but cleared up same day / next day.  Was able to travel to Venice (it’s been over 6 months since I have been able to leave the Naples area without assistance) for Thanksgiving.  Had small amounts of stuffing & lots of mashed potatoes & gravy and I could tell my body wanted more veggies by end of weekend – still no flare-ups.
Week 6 (11/29 – 12/5) – Beginning of week, I needed to get up once per night during sleep but by end of week I slept straight through.  My issue is getting to sleep due to adjusting to new energy.  Shoulder blades / back / neck (side to side) are 2-3 out of 10 due to all the sitting, travelling and eating (eating is also making my facial complexion worse) Thanksgiving leftovers (not to mention the pumpkin pie).  11/30 had my first major workout at my parent’s gym in Venice (1/2 hour).  12/4 did another major workout (both times were upper body – biceps, triceps, chest, abs) and also able to walk around the block with no issue at all (finished in less than 25 minutes; used to take me 40 minutes).  I’m also starting to be able to do short bursts of jogging / running since I lost the ability to run.  12/3 – travelled to Fort Myers and back in the evening time and traveled a few places – no issues.  Some days during the later part of the week show no significant pain / stiffness issues.
Week 7 (12/6 – 12/12) – Tested my body’s endurance at the beginning of the week – 12/6 took 3 hours of ballroom dancing lessons, 12/7 2 hours of social ballroom dancing, 12/8 one of my hardest workouts + laps + 2 minutes treading water at the pool for 1/2 hour straight; did it all without issue.  Upper workout mid-week without issue but felt it on 12/12. All together I worked out every day and felt some pains, but those are the pains of getting stronger – big difference than a flare-up due to inflammation. Neck range got better throughout the week (was at 3 out of 10, now 1.5 out of 10).  As for food, I won’t go back to Pei Wei as they do something that does not agree with my system (had the Thai Chicken coconut curry) & am learning to avoid Chinese stir-fry style meals now.  I also learned that I should not do more than a 1/2 a cup of black beans as anymore doesn’t work well with my system.

 

Iritis – The Last Straw

I have spent almost two years researching and trying to find the root causes to my Ankylosing Spondylitis / Autoimmune condition without taking a biologic medicine like Enbrel.  Although I’ve taken many steps to improve my condition like my Crohn’s disease diagnosis or my usage of Low Dose Naltrexone (LDN), I was being forced back into taking a biologic:

  • Continued to lose weight and at my lowest was 116 pounds (originally 158 lbs.)
  • Continued nutrient malabsorption
  • Fatigue / Anemia (usually sleeping twice a day & needing 10+ hours of sleep / day)
  • Sitting in chair too long makes my body very stiff.
  • Stools loose.
  • Very hard to squat down or bend over (can’t really do this unless I assist with holding onto something) to pick something up.
  • Flare-ups from foods, sometime even safe foods.
  • Get cold quickly along with poor circulation & purple fingers (Raynaud’s Syndrome)
  • Weak body: Need a rope to get out of bed, can only go to the pool for 10 minutes, no gym workouts, etc.
  • But the last and final straw was developing Iritis on 10/9/13.

What is Iritis?

Iritis which is basically inflammation of the eye.  Symptoms include (and I felt) pressure, sensitivity to light, redness and soreness – not to mention I was almost blind in my right eye.  If you are reading this somehow and develop Iritis GO TO THE OPHTHALMOLOGIST RIGHT AWAY.

Here is what it looks like:

Iritis before & after

How Did it Affect Me?

On 10/9/13 I had my mother come down to help me out and went to an Opthamologist in the afternoon to get the generic for Pred Forte & Cyclopentol.   Delaying the eye drops will only make things worse.  My Iritis was so bad I had to go to the doctor’s office blind and have her guide me to sit and move from one room to another.  Even in low light it was very painful and the eye exam was not easy.  Before I left, I requested & received blackout glasses and they have been very effective.    Rest of the day was low-light in the house, sleeping and keeping my eyes closed as much as possible – no TV, no electronics of any kind.  For the next week I had to stay inside and close all the blinds to my house and keeping the lighting very low.  I could only work on the computer for short periods of time and had to take naps to recover and keep my eyes from the light.  After a week or so, I was able to travel, but the Pred Forte continued to keep my right eye in a foggy haze along with seeing halos & stars around artificial lighting.  On 10/31 I saw the doctor and need to take an additional medication called Phenylephrine to stop my Iris from sticking to my Pupil.  I take that 3X/day along with Cyclopentol (1X per day) for a week.  The Pred Forte I take 3X for 1 week, then 2X for 1 week, and then 1X/day for a week.  Total time taking care of the Iritis:  1 1/2 months + 4 doctor visits.  For more info, visit my daily diary on Iritis starting from 10/9/13.

If Iritis was the Last Straw, What Did I Do About It?

As I mentioned below, I was being forced back into taking a biologic because my symptoms were becoming my root problems.  Instead of taking Enbrel again, I talked with my Rheumatologist and he prescribed Humira.  It works the same as Enbrel only it’s FDA approved for Crohn’s disease and Ankylosing Spondylitis.  I’ve been on it for a few days now and I have seen vast improvements to all my symptoms.  I will be posting my results along with my daily diary while on Humira in the next few days.  If you prefer to see my daily diary on Humira right now, review my diary on my LDN page starting on 10/25.

Low Dose Naltrexone / LDN Review for Autoimmune Disease

What is Low Dose Naltrexone / LDN and Why Use it for Autoimmune Disease?

Multiplying the cells in your body are controlled internally by naturally occurring endorphin called Opioid Growth Factor (OGF) and not the same external opioids like Morphine.   OGF binds with OGFR (OGF receptor which is in every cell) and when it does not, your immune system does not properly function.  Low Dose Naltrexone (LDN) regulates this by blocking the OGFR for a short period of time throughout the night and your body produces more OGF, OGFR, and increases the sensitivity of the two coming together.  By regulating the immune system, this process can dramatically reduce pain and inflammation, especially those with an autoimmune disorder.  The video below explains the process in more detail:

Low Dose Naltrexone (LDN) Reviews and Scientific Testing

NOTE:  I have Crohn’s Disease, so these test results are the closest to my autoimmune disorders.  However, it regulates many other autoimmune and other disorders.

“As of September 2002, Dr. Bihari was following eight patients with Crohn’s Disease on LDN. In all eight cases, within 14-21 days the signs and symptoms of disease activity stopped. All eight had remained stable since anywhere from 2 months to 36 months.”

“Seventeen patients with a mean CDAI score of 356 +/- 27 were enrolled. CDAI scores decreased significantly (P= 0.01) with LDN, and remained lower than baseline 4 wk after completing therapy. Eighty-nine percent of patients exhibited a response to therapy and 67% achieved a remission (P < 0.001). Improvement was recorded in both quality of life surveys with LDN compared with baseline. No laboratory abnormalities were noted. The most common side effect was sleep disturbances, occurring in seven patients.”

Low Dose Naltrexone (LDN) Requirements

  • Prescription from doctor.  My Rheumatologist Dr. Goodwin prescribes this but I am his first patient to prescribe with my Crohn’s Disease.
  • Optimal dosage is 4.5mg.
  • Cost is $38 / mo or lower if buying in bulk.
  • Take between 9pm – 3am.  I can confirm you do not need to take it at exactly 9pm like my doctor prescribed.
  • Avoid slow-release (SR) or timed-release naltrexone. You want to be sure the LDN you receive is in unaltered form that allows you to receive the full dose quickly. Slow-release formulas may not give you the full therapeutic effects.
  • Be aware of inactive fillers. Part of the LDN capsule will contain a “neutral” filler material, however there is some evidence to suggest that calcium carbonate as a filler could interfere with the absorption of LDN. So to be on the safe side, avoid LDN capsules that contain calcium carbonate fillers. Recommended either Avicel, lactose (if lactose intolerance is not a problem), acidophilus / probiotic, or sucrose fillers as useful fast-release fillers.

My Personal Low Dose Naltrexone (LDN) Diary and Review

Low Dose Naltrexone Produces More OGF

Low Dose Naltrexone Produces More Opioid Growth Factor (OGF) and is Reducing My Pain and Inflammation / Regulating Immune System

REVIEW:  In almost two years of being off Enbrel, I was not seeing the results I wanted.  In fact, the last couple of months have been much worse and barely tolerable.  A few weeks ago, I made the decision and was at peace to start going back on Enbrel but wanted to try LDN as a “last hurrah” since it has helped out others with autoimmune, the side effects were much less than Enbrel, relatives I know have taken similar medication with success, and it’s one of the very few prescriptions the holistic community approves.

As I write this ongoing story, I can tell you I have made some major gains in reduced inflammation and pain.  The first 3 days were terrible, but things did get better about a week after I started.  In the two weeks I’ve taken LDN, my friends have noticed I am better plus I am able to be more active.  While it hasn’t solved my underweight issue, I am hoping my body will get used to the medication more and I can start to finally absorb foods better.  Something tells me, though, that will be another hurdle answered in another post.

UPDATE 10/23:  After taking LDN for over 1 1/2 months I’ve concluded that it really does help bring down my symptoms of inflammation and could be helping my system regulate itself.  However, the process is too slow now and I am just too busy to get another Iritis attack, shooting pain problems, and the myriad of other issues I am dealing with.  My hope is to have Humira take care of the bulk of my symptomatic problems while helping to fix my Crohn’s disease.  The LDN then helps regulate my body and, along with a healthy diet, will fix my root issues.  I also plan on continuing with my autoimmune doctor to find other root causes for my high levels of inflammation.

9/4 – Bed at 10:15pm, woke up at 6:30am, napped from 9-10am and 1-2:30pm.  Woke up many times throughout the night (every 1/2 hr, 3/4 hr, 1 hr, 2 hrs mix).  Woke up with sore hips, legs, sternum, and shoulder blades.  I would have a rapid amount of dreams and thoughts throughout the night.  Since the Rheumatologist and disagreed on things and I spoke with my parents that evening, the dreams were a mix of the two.  Was able to cook dinner for friends in the evening along with fish & play chess after 8pm.  Losing weight and at my lowest of 117lbs.
9/5 – Bed at 10, up at 2am, then 7:30am.  Napped from 9-11:30am and 3:15-4:30pm.  And like yesterday, having many dreams and thoughts throughout the night along with my body jerking (and waking me up sometimes with shooting pains) whenever I had a dream involved with an quick action.  Had to take 3 bathroom breaks than my normal 1-2.  Woke up with sore spine, neck, shoulders, hips, and tired.  I slept 13 1/4 hours today.
9/6 – Bed at 10:15pm, up at 4:30am.  Stayed up until 6am and napped until 7:45am.  Afternoon nap from 1:15pm to 3:15pm.  Woke up stiff all over at 4:30am.  This was by far the worst sleep I’ve had in months.  Every 20-30 minutes I woke up with a shooting pain like someone was using an electric prod or taser on stun mode.  When I woke up at 7:45am, my right hip and neck were the biggest issues.  Did light swimming for 10 minutes at 11am.  During the afternoon nap, my mid section locked and back right / left ribs would send shooting pains if I moved.  Getting out of bed was not easy but was able to roll out of bed.  Today was my last day using GI-Synergy supplement.  Had some soup at 4:30am & contributed to 2.5lbs weight gain in the morning.
9/7 – Bed at 9:30, up at 6:30 waking up intermittently but going right back to bed.  Napped from 9:30am – 10:30am & 1-2:30pm.  Still up throughout the night but was half as bad as yesterday.  I also did not need to leave the bed to go to the restroom and will continue this trend with the mason jars (I think I do worse if I try to get up in the middle of the night).  As usuals woke up with neck, shoulder, legs / hip pain but not as bad as yesterday and I am finally starting to see some improvement! Throughout the day got weaker and my ribs / sides in the back area were sore and if twisted the wrong way would send shooting pains.  Sitting back in any chairs did not work.  Also hard to get out of bed in the afternoon because of those shooting pains (took me 20-30 minutes).  I was able to take a short walk at 6:30pm.
9/8 – Bed at 10pm, up at 5:30am waking up intermittently. Napped from 7:30am – 9:15am and 2:15 – 4:30pm.  Prior to morning nap I was weak with back rib area, neck, knees, legs, shoulders & hips hurting.  After on/off morning sleep, I felt better in most of these areas.  I was able to travel to two stores with help from my neighbor and getting in/out of the car was easier than last time.  Developed a headache after the afternoon nap all day and is dull in the late evening.  I am up to 121lbs. now.
9/9 – Bed at 10pm, up at 6am waking up intermittently.  Napped from 7:45 – 8:30am & 2-3:45pm.  Main pains of the day were the left leg / hip areas & knees.  I also became weak during my afternoon nap (I had the ceviche but am finding my body isn’t good enough to handle on it’s own) & in the evening.  Had a steak for dinner & felt better in the late evening.
9/10 – Bed at 10:45pm, up at 6:30am waking up intermittently.  Napped from 12pm – 2:30pm.  Left leg and shoulders again, but went to the pool for 10 minutes at 9:30am and did a short walk at 7pm.  I haven’t done both on the same day in months.  As the evening progressed, my right foot got puffy / inflamed again but went away after I woke up the next day.  Weight still decreasing and at 118lbs now.
9/11 – Bed at 10:30pm, up at 3:45am – 4:15am and 8am.  I was too uncomfortable to stay in bed and had to get up.  Better range of motion in the morning for my shoulders & some in the neck.  Pain still in left leg & hips, but better.  I’m at 118 1/2lbs today.  Took a walk at 7pm.
9/12 – Slept at 11:45pm (was in the bed by 10pm), up at 6am, napped from 8-10am and 1:15 – 2:45pm.  Usual hips and legs sore.  Right shoulder blade was predominantly sore throughout day along with left front rib in afternoon / evening.  I was able to pick up dishes in the morning without needing to lean with one arm.
9/13 – Bed at 10:30pm, up from 4:30am – 5am and then woke up 8:15am and napped from 3pm – 4:30pm.  General spinal / back stiffness along with left hip & leg.  Was able to finally do a half-moon pose in Yoga and was at the pool for 15 minutes at 10:15am.  Whole body was sore from afternoon to evening but went mostly away by next morning.  Developing diarrhea and lots of gas the last few days and have a feeling it’s due to my intestinal system rejecting the low-dose Naltrexone (but still works as it should with my mind / opioid receptors).  Still averaging 118 lbs.
9/14 – Bed at 10:30pm, up at 5:45. Napped from 8 – 9:30am and 2:15 – 4:15pm.  Still have the diarrhea / gas in the morning but much less as the afternoon progresses.  General stiffness all over along with hips / legs.  Travelled to three separate places today and did lots of walking along with carrying 8 jugs of spring water.  Needed afternoon nap, but was not exhausted.
9/15 – Bed at 11:15, up at 6:15am.  Napped from 8-9am & 3-4:45pm.  Pain mainly in the shoulder blades and getting shooting pains in my left leg.  This was mainly due to riding in my parent’s car which is a little stiffer plus going out to eat (again, stiff seats).  As a sidenote, it was great seeing my parents since they left last May.
9/16 – Bed at 10:30, up at 4:30am, then 7:15am.  Napped from 9:30am – 12pm.  Woke up with neck, shoulder, sternum & low-back pain in the morning.  Overall just too tired to do much in the morning, tried sleeping on my side and didn’t get enough quality sleep.  Throughout the morning nap, I switched back to my back automatically and got the rest of the sleep I needed.
9/17 – Bed at 10:30pm, up at 4:15-4:30am and then 7:15am.  Napped from 9:30am – 10:45am, 2:15 – 3:45pm.  Overall moving better all over.  Some stiffness in the neck and shoulder blades / shoulders.  Late morning was my best time and was walking almost normal.  Went to pool at 11am for 20 minutes and did a small walk before I went to bed (around 9:30pm).
9/18 – Bed at 11:15pm and up at 6am.  Napped from 8-9am and 2-3:15pm.  Throughout night I usually wake up around 12:15am, but this time it was 2:15am.  Woke up with right leg limping again along with stiffness in right shoulder blade, neck, and low-back.  Right leg progressively worse as the day and evening progressed.
9/19 – Bed at 10:30pm, up at 6:45am.  Napped from 8:30am – 10:30am and 1:15pm – 3pm.  Pain mainly in the legs, shoulders and neck.  After breakfast, had a big bowel movement and was unexpected.  Throughout day the pain & limping would jump from the right leg to the left leg (after afternoon nap) and right shoulder blade acting up in the late afternoon.  Took a short walk at 5pm.
Sunset Vanderbilt Beach Naples Florida9/20 – Bed at 11:45pm, up at 5am and slept from 6-7:45am.  Took an afternoon nap from 1-2:45pm.  Pain with neck / shoulders, shoulder blades and legs.  Was able to go to drive and go to dinner and (on a spur of the moment) saw the sunset for the first time in months.  This is also the start of the first fun weekend I could get out in months.

 

 

9/21 – Bed at 10:45pm, up at 6:30am.  Napped from 8:30 – 9:45am and 2-3:15pm.  Morning pain was neck, legs and shoulders as usual and the neck stiffened up throughout day.  Since my good bacteria levels are good, I am now at a point in my level of inflammation where I can test to see if fermentation may be a root cause due to the fungal levels I received from my gut ecology test.  As of today, I have stopped drinking water kefir as it is one of the only (and main) fermented foods / drinks I have (and have on a daily basis).  If I get better this week and next, I’ll know fermentation is an issue with my fungal gut ecology.  For activities, I went to Whole Foods twice, Target, and then AZN Cuisine for dinner.  Took a 1/2 hr – 45 min walk after dinner around 7:15pm (longest I can remember in awhile).  I still find it difficult to sit in restaurant booths and chairs.
9/22 – Bed at 10:30pm, up at 5:30am and napped from 7:30am – 9:15am + 3-4:15pm.  Shoulder blades more prominent for pain, but also neck and legs as usual.  My dreams the past week have been 80% about people I don’t know and they come in and out rapidly (not as bad as week 1 though).  These thoughts / dreams / visions can also start within 30 seconds of closing my eyes and make little sense.  I wake up many times saying “What’s wrong with you?” as if my dreams are the 3rd person.  Went to lunch with my parents at California Pizza Kitchen and tried the Barbecue Chopped Chicken salad that was against my diet (had beans, tortilla strips, and salad is raw which is harder / more fibrous to digest).  I’m happy to say NO FLARE-UPS!  And no major deviations that I normally see when I digest food.  This is a great step in the right direction for me.
9/23 – Bed at 11:15pm, up at 6:30am and napped from 8:30am – 9:30am and 2-3:30pm. Pain issues mainly with the shoulder blades.  Cooked in the evening with friends and made a stew with lentils.  While I was able to eat them and not have a flare-up, the flatulence was still there and I could tell I was starting to push things.  I will wait a few days before I have the leftovers.
9/24 – Bed at 11:15pm, up at 6:30am not waking up as much in the middle of the night.  Napped from 8:30am – 9:30am and 1:15 – 2:45pm.  Issues still with the shoulder blades and the standard aches all over in the morning. I’m starting to get less random dreams and developing one continuous dream / story throughout the night.  Went to the pool at 10:30am for 15 minutes and walking a little farther in the evening around 7pm.
9/25 – Bed at 11:15pm, up at 6:45am.  Napped from 1-2:45pm.  Main issues with shoulders (mostly right) and shoulderblades.  Neck also stiff and my right foot gets swollen in the morning.  Saw the Gastroenterologist and wants to do a colonoscopy / endoscopy like last time for confirmation of my Crohn’s / IBS / UC.  Other than that I was cleared.  Finally able to walk down the street & back (first time in over a month).
9/26 – Bed at 10:45am, up at 6:45am.  Napped from 9 – 9:45am and 1:30 – 3pm.  Main pains in right shoulder / shoulder blade.  Some in the neck and hips.  As the day progressed, my right foot stayed swollen.  This is my first time I stayed in bed and slept a full 8 hours (needed to use the mason jar once) since taking my Low Dose Naltrexone.  I’m also stopping to eat eggs for a bit as I think my stomach does not agree with me if I take them everyday.  I’ve switched to rice cereal and/or quinoa cereal with almonds and raisins / craisins.  If still hungry I add in a sausage.  Did a short walk in the evening.
9/27 – Bed at 10:30pm, up at 1:15am then 7am. Napped from 1:30pm – 3pm.  Main issue with right shoulder blade and not as much with the hips and neck.  Went to the pool at 9:30am for 15 minutes.  Evening was a 2 hour energy healing session.  Sitting in a hard chair is really hard on my neck, shoulders and spine.  The energy healer sensed it and along with my meditation helped clear it up for the evening.
9/28 – Bed at 11pm, up at 7 and napped from 8:30am – 9:15am along with 2:45pm – 4:45pm.  Issues mainly with the inner shoulder blades, neck and spine (best guess due to sitting in hard chairs night before).  I was able to extend further in my torso twists on with Wii Fit. Also last morning of taking the EFAC supplements.  Travelled with my mother and took her out to dinner in the evening.  Was in / out of car around 10 times with all the places we went (most that I can remember).  Definitely tired by afternoon and sitting in the restaurant was difficult but still manageable.
9/29 – Bed at 11:15pm, up at 5:30 and back to bed at 6am.  Napped from 6-8:30am and 1:45 – 3:45pm.  Main issue with the shoulder blades and some with neck.  Right foot continues to swell up in the latter part of the morning.  Did a 30-second plank on the Wii Fit.
9/30 – Bed at 10:30pm, up at 12 and 5:45am and got up at 8am.  Napped from 1 – 2:30pm and felt lethargic afterwards.  Overall sore due to plank & low back.  Walked at 6pm to end of street and vacuumed in the evening.
10/1 – Bed at 11:15pm, up at 6:30am.  Napped from 1-2:30pm.  Overall sore and stiff in morning, afternoon nap helped.  Went to my tech meeting (1st time in over 2 months) at 6pm – 8pm (sitting on hard chairs still difficult) and walked it off for 30 minutes at 8pm.  Went to be exhausted.
10/2 – Bed at 10:15pm, up at 6:15am.  Napped from 8:30am – 9:30am and 12:30pm – 2pm.  Main issue is right hip / leg & mid-back.  Shoulders / neck better than a few days ago.  Overall stiffness as usual but better after naps.  Went to dinner and still hard to sit at a booth (or anything) at a restaurant.
10/3 – Bed at 10:45pm, up at 4 & 7am.  Napped from 10 – 11:30am and 2:45 – 4pm.  Right hip in the morning (twisted it weird while sleeping throughout night) but better late morning.  Most of the day felt tired and sore (like you do when you’re sick).  Don’t know if it was from the restaurant the day before (Barbecue Chopped Chicken salad at CPK) or because it rained all day.
10/4 – Bed at 11pm, up at 6am.  Napped from 8 – 9:30am and 2-4:30pm.  Stiff as usual with soreness at the tops of my shoulders, hips, and low-back.  Went to the pool at 10am for 20 minutes with a harder routine:  10 minutes treading with aqua jogger, 10 minutes of stretching / yoga, squats, push-ups and bicycle motions on the stairs.  Evening took a 15 minute walk.
10/5 – Bed at 11pm, up at 6:15am.  Napped from 8:45 – 10am and 1:30 – 4:30pm.  Predominant issues are left elbow (from sleeping incorrectly & the pool) along with general stiffness and body aches with a minor headache in the morning.  I still continue to wake up a lot from 1:30am – 6:15am but go right back to bed which is due to my body still not being able to stay in the same position too long.  I’m still too weak to sleep on my sides and I never feel good if I sleep more than an hour on my side (sides & arms hurt for 1/2 the day).  The neck is getting better range of motion up & down, side to side is seeing small improvement.  In the evening I had a 2/3 pound hamburger “salad” with a malt (which was heaven in a glass) and this gave me no adverse reactions.  I will continue pushing dairy to help gain some weight.  Sitting down is still very difficult at restaurants.  But I went to the movies and was uncomfortable for only a bit (getting up was hard the first few steps as usual).  I consider this a win because last movie I saw I was sitting up and back many times throughout the movie.
10/6 – Bed at 11pm, up at 5:15-5:30 and slept until 7:15am.  Napped from 2-3:15pm.  Slept straight through 11 – 4:15am without waking up.  Pain and stiffness generalized throughout body but nothing too noticeable.  Went to pool at 5:30pm for 20 minutes.
10/7 – Bed at 10:30pm, up at 6:30am.  Napped from 8-9:30am and 1:15 – 3pm.  Hips and neck hurt mainly to overdoing the pool exercises.  Woke up 1:30am to use the mason jar and then slept until 5:30am.  5:30am – 6:30am woke up many times.  Tried cheddar cheese and Breyer’s ice cream.  Short evening walk due to pains mostly throughout the day.
10/8 – Bed at 10:30pm, up at 6am.  Napped from 8:30 – 9:45am and 3:30 – 4:30pm.  Still sore and stiff due to the pool and possibly the cheese / ice cream.  Lower back was extra stiff and sore for some reason.  Starting to take short walks in the morning and took a walk down the street in the evening.  Health did improve after morning nap and in the afternoon.  More than ever I’m convinced that I need more sun as I just feel better when it’s out.  Saw the Rhumetologist (test results 10-3-13) and will be reporting the tests and info back soon.
10/9 – Bed at 10:30pm, up at 6:30am.  Napped from 7:30am -9am and 1:30pm to 2:30pm.  General motion & stiffness better.  Developed Iritis which is basically inflammation of the eye.  Symptoms include (and I felt) pressure, sensitivity to light, redness and soreness.  Included is what it looks like:

Had my mother come down to help me out and went to an Opthamologist in the afternoon to get the generic for Pred Forte & Cyclopentol.  If you are reading this somehow and develop Iritis GO TO THE OPHTHALMOLOGIST RIGHT AWAY.  Delaying the eye drops will only make things worse.  My Iritis was so bad I had to go to the doctor’s office blind and have her guide me to sit and move from one room to another.  Even in low light it was very painful and the eye exam was not easy.  Before I left, I requested & received blackout glasses and they have been very effective.    Rest of the day was low-light in the house, sleeping and keeping my eyes closed as much as possible – no TV, no electronics of any kind.  In the evening I walked down the block (20 min.) at 7:30pm.
10/10 – Bed at 10:30pm, up at 3:30am and then 7:15am.  Slept from 10 – 11:15am and 12:45pm – 1:45pm.  Iritis condition is much better but still quite sensitive to light.  Saw the Opthamologist and agreed the condition is better but to stay on the drops for another week.  General stiff & sore and still hard to get out of chairs.  Mid-day I rested 5-6pm and walked down the block at 9pm.  Drank Chardonnay the 1st time in weeks along with some ice cream – something rewarding for all the stuff I went through.
10/11 – Bed at 10:30pm, up at 6:15am.  Slept from 9:30am – 10:45am and 12-2:30pm.  Right eye slightly better than yesterday but still sensitive to light and developing headaches due to the medication and light.  I’m able to view the computer monitor a 1/2 hour in the morning at a time and 5-10 minutes at a time in the afternoon.  More sleeping and house still quite dark – Dracula would be happy here.  Evening went to a Whole Foods cooking class and was able to sit in the chair semi-comfortable.  Any other times in the past 4-5 months have been very uncomfortable and had to get up a few times.
10/12 – Bed at 10:45pm, up at 7am.  Slept from 10 – 11:15am and 2-4pm.  Stiff back, right eye sensitive to light but better than yesterday and can watch TV and travel outside the house.  Can tell body fluctuating in inflammation throughout the day and it becomes more prevalent after eating (confirming yet again my digestive system is still not in good shape).  Went for a walk down the block at 9:15am and at 6:30pm.  Got a care package from my friend George and lifted my spirits for the weekend.
10/13 – Bed at 11:45, 5:15am – 5:30am – 8:30am.  Napped from 10:15 – 11:30am & 3:30 – 5pm.  General stiffness in shoulder blades, neck, and back with soreness in hips.  Right eye cloudy due to meds along with some light sensitivity.  Walked for 20 min. at 5:30pm.  Out of B6ND supplement.
10/14 – Bed at 10:45pm, up from 5:45 – 6:15am and slept until 7:30am.  Napped from 1-2:30pm.  General stiffness in shoulder blades, neck, and back with soreness in hips.  Right eye cloudy due to meds along with some light sensitivity.  Shoulder blades got worse throughout day & need to go to pool.  I went for a 20 min. walk at 6:30pm.  Saw my Rheumatologist  and got a prescription for Humira which is a biologic medicine similar to Enbrel but is also FDA approved for Crohn’s disease.  Even though my inflammation test results are improving, I cannot keep living in this condition – needing 10+ hours of sleep a day (anemic), low weight (117 lbs. currently), weakness, and limitations of food intake along with the dangerous levels of high inflammation.  My hope is to be on Humira for under a year, keep fixing my root causes, and hopefully the LDN will be good enough for me to stay on.
10/15 – Bed at 10:30 – 7am, got up at 5am.  Napped from 1 – 2:15pm.  Right eye is better, general stiffness in back, and went the pool for exercise at 10:30am  to help out with the shoulders (1st time I could do that with light sensitivity and chlorine concerns).  Went for a 25 minute walk at 6:15pm.
10/16 – Bed at 11pm, up at 12:45am, slept until 7:30am.  Napped from 1 – 3:30pm.  Stiff mid-lower back and right eye still blurry from meds. 9:30am walked for 20 min.  Went to Whole Foods class in evening and had a stew that contained flour with the meat & dark beer within the sauce (containing wheat) which gave me a mini flare-up.  Usually I would have a flare-up for days, but this only lasted for a few hours.
10/17 – Bed at 10:30pm, up at 3am, slept until 7:30am.  Napped from 1:15 – 2:45pm.  General stiffness and soreness throughout with right eye cloudy.  Pool at 5:15pm for 10 minutes.  Pool is becoming too cold to swim (teeth chatter & purple fingernails), but need it for my range of motion.
10/18 – Bed at 10:30pm, up at 2am, slept until 7:30am.  Napped from 10:30 – 11:15am and 1:30 – 3pm.  General stiffness and soreness.  Past few day from 4:30am – 7:30am I’ve been on/off with sleep (but not enough to get out of bed).  Walked at 9:30am for 20 min.  To recap my conditions before going on Humira, I have / am:

  • 117lbs.
  • Rt eye inflamed (Iritis) and need to take drops (Pred Forte 5X/day & Cyclopentol 1/day)
  • Sitting in chair too long makes my body very stiff.
  • Stools loose
  • Very hard to squat down or bend over (can’t really do this unless I assist with holding onto something) to pick something up.
  • Fringe foods are more tolerated.  Started eating more dairy to see if I gain weight.
  • Grains / flours give me mini-flares.
  • Still have not tried bread or pasta as in the past I would get the worst flares from that.
  • Getting in/out of bed is still hard and painful and I need a rope to get me out of bed.
  • Pains are usually due to stiffness and not shooting pains as before.

10/19 – Bed at 10:45pm, up at 6:15am, back to bed from 7:15am – 9am.  Napped from 11am – 12:30pm & rested in bed for an hour in the evening.  Noticeable pains / stiffness in low-back, hips, left elbow and extra stiff and tired from going out to the movies last night plus riding in another person’s car (not SUV).  6:30pm did a 15 minute walk and went to Costco in the afternoon.
10/20 – Bed at 10:45am, up at 1:15am and 7:15am, slept until 8:45am.  Napped from 3:45 – 6pm.  My body was exhausted over the weekend and needed to sleep 12+ hours today.  Body was generally stiff from all the bed rest.  Did some shopping at the farmer’s market and Whole Foods.  Went for a 20 minute walk at 6:30pm.
10/21 – Bed at 10:45, up at 3:30am & then 7:30am.  Napped from 12:45pm – 2pm.  The sleep over the weekend helped out as I feel less inflamed & stiff which I need because I am in the middle of a lot of work right now.  My neck was noticeably more stiff throughout the day.
10/22 – Bed at 11:15pm, up at 6:45am.  Slept from 8:45am – 10:30am and 1:30pm – 2:45pm.  My left elbow was hurting as I slept wrong on it throughout the night.  Other common pains include the stiff back, shoulders, and right foot.  I made my sleep number bed harder to help with my neck.  Went for a 20 minute walk at 6pm.
10/23 – Bed at 10:30pm, up at 1:30, then 6:30am.  Napped from 12:45 – 2:30pm.  Noticeable areas include my sides (rib areas in front), shoulder areas, stiff lower back, neck, right eye (due to meds) and right foot.  The sides and shoulder issues are due to washing clothes yesterday.  Went for a 20 minute walk at 6:30pm.
10/24 – Bed at 10:30pm, up at 3:45am and then 7:30am.  Napped from 1 – 2:15pm.  Better than the past few days.  Same ailments as yesterday but seem to be half as stiff / sore in the morning.  My friend George visited me starting today and we took a walk 8:30pm for 20 minutes.  The evening was the coldest in many months and I could tell my body was very stiff during that walk.  This week has been quite a challenge with working as much as possible between my sleep, cooking, and dealing with getting my prescription (TB test negative took me an extra week of waiting plus another week with the prescription company & insurance validation – review info on 10/14/13).  I’ve been working so much I haven’t spent much time with George today and today was supposed to be the start of my mini-vacation.  Plus I saw my Opthamologist and need to keep taking the meds (Pred Forte 4X/day & Cyclopentol 1/day) which makes it harder to drive with artificial light & my eyes strain working at the computer due to the cloudiness.

After taking LDN for over 1 1/2 months I’ve concluded that it really does help bring down my symptoms of inflammation and could be helping my system regulate itself.  However, the process is too slow now and I am just too busy to get another Iritis attack, shooting pain problems, and the myriad of other issues I am dealing with.  My hope is to have Humira take care of the bulk of my symptomatic problems while helping to fix my Crohn’s disease.  The LDN then helps regulate my body and, along with a healthy diet, will fix my root issues.  I also plan on continuing with my autoimmune doctor to find other root causes for my high levels of inflammation.


 Start of Taking Humira

10/25 – Bed at 10:30pm, up at 4:30am and then 7:15am.  Slept from 9-10am and rested from 1-2pm.  Woke up stiff & sore due to all the work I’m doing, doctors, insurance, etc.  Same old routine with the right foot, left elbow, back & shoulders along with the right eye cloudy from the meds.  I began taking Humira in the morning with the pen instead of taking with the syringe like I used to with Enbrel and it’s much easier to administer plus I only have to take one time every two weeks.  I was finally able to start my mini-vacation at 6pm (which is just the weekend + a little on Monday) by traveling up to Venice (1st time since March).  One great steak dinner & some Chardonnay later & I was beyond exhausted by 7pm…but very happy to be with my parents and George.
10/26 – Bed at 10:30pm, up at 4:45am, then 7:30am.  Napped from 3-4:30pm.  Noticeable areas of pain / stiffness are right foot, neck, low back & cloudiness in right eye due to meds. 1st day after taking Humira and I can already start to see the effects of the medication.  I feel less stiff when I woke up and my Yoga was easier to do in the morning.  I had a full sleep from 10:30pm – 4:45am & then it was on & off as usual.   Where it started to really shine was I could walk at the Ringling Museum for 2-3 hours.  And for lunch I had fries along with a Colada & grilled fish.  Normally this would flare me up, but it didn’t.  But I could notice my stomach not feeling so good for a few hours after that lunch.  By the afternoon I was exhausted but felt better after getting up.  Fajitas and margaritas in the evening with fringe foods with no flare-up and my stomach felt fine afterwards.  Lower back still stiff & hurting if I stay in a chair too long.  Shoulders / neck / mid-back OK throughout day but my sides (front rib areas) hurt a bit.
10/27 – Bed at 11:15pm, up at 5:15am and then 8am.  Napped from 11:30 – 1pm.  For 1 1/2 years, I dreamed of what arrived today. Woke up much easier and my pain & stiffness is much less.  Neck still limited left & right, but better up & down motion.  Right eye cloudy due to meds.  Went to the cold pool and hot tub (Russian bath style but not as bad as this) at 9:30am for 20 minutes.  Drove back to Naples, cooked dinner for me & three friends & no flare-ups.  Prior to taking LDN, I could not do it.  While on LDN alone, I could do it, but would need help from my friends to cook / clean while I rested.  Today, no problem.
10/28 – Bed at 11:15pm, up at 1pm, then 6:30am, then 8:30am.  Tried to nap in the afternoon but too much to do & phone calls.  Neck range same as yesterday + shoulders & low-back a bit stiff.  Right eye cloudy with meds, right foot inflamed & hips hurt.  I can now get out of my own bed without using the rope!  In the morning was able to do a Plank for 30 seconds and got up much easier than I did trying this on 9/29.  Bending down to put dishes away is better but still cannot pick stuff off the floor.  Dressing myself takes much less time and is easier to do (feels kind of like a joke now to do).  10:30am walked around the entire neighborhood block for the first time in over a year.  6:15pm walked down the end of the street and took 15 minutes, not 20 minutes like before.
10/29 – Bed at 11pm, up at 6:30am.  Napped from 2:30pm – 3:30pm.  1st time I didn’t get up in the middle of the night.  Looks like my adrenals are getting back to normal now.  Noticeable areas are right eye (meds), right foot but better than yesterday.  8:30pm walked down the street for 15 minutes.  Lower back sore in the evening (probably due to plank yesterday).
10/30 – Bed at 11:15pm, up at 6:15am & napped from 3-4pm.  Waking up with low back stiffness at 3 out of 10.  Neck is still 4 out of 10 left to right & 3 out of 10 up & down.  My stools have pretty much normalized at this point and my weight is now 119 1/2 lbs.  I seem to gain a little over 1/2 lb. each day since taking the meds.  8am and & 6pm walked down the end of the road.