Overall: Refitted with Sole Support orthotics on 6/4 (will get them next week), ibuprofen regiment change, travelling to Venice / Sarasota, and more mobility at night (some nights are better than others).
Sleep: As with many other previous weeks, I am still waking up twice a night. I go to bed at 10pm, get up around 1am (take 1 ibuprofen), then around 4am (take 1 ibuprofen, 1 probiotic, and fish oil), then finally get up at 6:30-7:30am.
Ibuprofen regiment change: I normally take as needed, but have been suggested to take at specific times per day (started this on 6/5). My times are: 2 throughout the night (read above), one when I wake up / 8am, one at noon, one before dinner / 4-5pm, and one before I go to bed. Taking 6 ibuprofen a day has worked for others in the NSD forums and should cut down on the slowness / tiredness / body aches I get every day. Keep in mind that the exact times & (sometimes) dosage increases depending on the day’s activities.
More Mobility at Night: During my “good days” of the week, I am able (with ibuprofen) to stay more mobile than I was last week. I still don’t walk as fast as everyone else + I still limp some, but there is progression. An example was Friday night (6/1), I went to dinner, walked around a 1/2 mile and then watched a movie at the nearby theater. After the movie was done around 10pm, I was able to walk faster than I ever have at night. This was a much needed “win” on my battles as my patience is tested everyday with this this auto-immune disease.
Travelling to Sarasota: Long day on 6/6. Driving from Naples to Venice to Sarasota & back started around 3pm and got back around 11pm – 3 hours of which were driving. I was surprised the next morning that I felt pretty good (usually all that driving wipes me out the next day). Again, another “win” on my many battles. This is Why I Went to Sarasota on 6/6
Little Brayan Graduates the 5th Grade (2nd kid, right side)
Current Areas of Concern: Right side of neck (still improving but not there yet), still limping and getting out of the chair to walk is the hardest, feeling lethargic in the mornings / nighttime, I still cannot get a full night of sleep, and get body aches all over (the pain areas change all the time), need to gain more weight, but my body doesn’t feel good enough yet to risk a major flare-up.
Areas of Improvement: Ibuprofen regiment to reduce inflammation & pain helping, overall mobility improving.
Enbrel: It has been 15 1/2 weeks since my last shot.
Today marks 3 months since I’ve been on this new lifestyle diet – constantly updating as I learn new information. Inflammation levels still high (high enough for my Rhumetologist to call me), I’ve been battling mid-back, shoulder blade & upper back areas (more during the end of the week). The “big” tests have been sent & will be ready in under 3 weeks. Other tests will come sooner & by the end of April, I will understand my body better. For now, pain & inflammation consumes me, but doesn’t define me. I’ve also learned how much I’m loved by God, family and friends through this ordeal. Without them, this lonely journey would not continue.
Info for Week 12
Seafood Health Chart
Best type of fish (low in mercury & high in Omega 3-fatty acids DHA & EPA are: salmon, mackerel, anchovy, herring, rainbow trout, crab (body meat), sardine & cod liver oil.
On 4/5, did a test for papaya & the Magnesium Glucomate (MG). Papaya is an inflammation reducer & MG is a muscle relaxant. In the morning, I did not take my ibuprofen and instead took these two around 10am. By noon, the pain was still there and saw very little improvement (if any). From now on, I continue to stick with the ibuprofen and keep taking the supplements as requested.
On Friday 4/6 I went to US Healthworks in Sarasota to do the blood draw for the Cyrex Test (array 4)
Made an appointment with Dr. Allessi in Bonita Springs on April 16th to take the cholesterol, Fruit & sugar test (glucose?), 25-Hydroxy Vitamin D Test, Th1 & Th2 (Autoimmune level) tests.
4/9 (Sunday) developed a leg cramp in the middle of the night along with shooting pains while trying to fix the issue (lower shoulder area & right-side rib cage). I was able to stretch it out in bed, but have found more ways to fix the issue. Since I took the tests on the same day, I couldn’t have any ibuprofen before the morning. During the day I took ibuprofen all day long due to my trip back/forth to Naples on Saturday. That trip gave me inflammation not only on my sides, but parts of my back and the entire upper half of my body was sore. In the future, I need to use seats that recline back.
My Health in Week 12
Sleep, Pain & Inflammation: In week 9 I am seeing some improvement with my sleep. Instead of waking up 2-3 times per night, it’s usually twice – about 3 hours after I sleep and then 5-6:30am time frame. As with the previous couple of weeks, I see inflammation mainly on my sides (rib cage area). Below & sides of shoulder blades still hurt after waking up plus I always have a stiff back. On 4/6, I’ve changed my sleep number bed from 40 to 35 & it seems to help the stiffness. A week ago I was getting shooting pains from my right leg when I was in bed. As of week 9, those pains are going away (they go on & off, but more off) and I believe that is due to switching positions from the head of the bed to the foot. I’m also not sleeping diagonal anymore (I get more stiffness, but it’s worth training myself to sleep in a normal position).
Progress: I am starting to be more productive with my workload as I’m getting more time with work without feeling the pain (I work whatever time I can, no set schedule). My parents are saying I’m looking better & I’m not as exhausted. And when I do, Ibuprofen & sleep. On 4/6, I took a 3 hour nap and it carried me through the rest of the day / evening. The latter part of the week got worse due to traveling in Naples + the forward motion that AS does to my body. As of 4/8, I’ve dealt with throbbing pain (especially when going to bed), but it’s improving each day (going to the pool & hot tub helps).
Swollen ankles – Swelling is down to manageable levels, but still prevalent. I’m still not sure why it’s happening since this is the 1st time it’s ever happened.
Continuing Apex Energetics Proglyco-SP 90 (regulates hypoglycemia’s blood sugar & adrenal glands). I still get the night sweats, just not as much. I have a feeling it’s because I’m in the same position all night & the heaviness of the cotton shirt. Once the bottle is done, I’ve got another one where I will reduce the dosage in half.
Continuing to take Magnesium Glucomate (MG). On it’s own, I don’t see the benefit. But, like most stuff I’m taking, I’m getting better. So I’ll continue to take this for another month or so. When I start weening off the ibuprofen, I’ll start weeing off the Zyflamend & MG.
Enbrel: It has been 7 1/2 weeks since my last shot.
My lowest weight was 136 lbs. and a BMI of 19.04 (4/9).
Tried making Brownies/Chocolate Cake with Stevia (1/2 the amount recommended) & coconut butter – dry as a bone…had to throw it away. Next time will use the Stevia full amount requested + a 1/4 cup of apple sauce.
Ordered 4/4 the Cyrex Test (array 1-4), Metametrix, and Diagnostechs (Saliva Test). Although it ran me almost $715 (normal price is around $2100), it’s going to let me know what I can & cannot eat . I also completed blood work for CBC, CMP & Sed Rate from my Rhumetologist (results next week). I’ll take the tests on Sunday & the Cyrex (blood test) this week / early next week (after submission will take 3 weeks for results).
Still waiting on my D.O. to call me back about my other tests – cholesterol, Fruit & sugar test (glucose?), 25-Hydroxy Vitamin D Test, Th1 & Th2 (Autoimmune level) tests.
– Edimame Makes Me Flare-Up: Although soybeans are one of the least-starchy beans, I made the mistake of having an entire bag of them. Either it’s too early to eat these or I just can’t eat them at all. Regardless, I had a flare-up that lasted after lunch on 4/3 & ended after breakfast on 4/4. I have a feeling that the Pyloricin may have killed off the starch-feeding bacteria. .
My Health in Week 11
Overall: I’m breaking through in week 8 after deciding to add ibuprofen when I need it. On Thursday 3/29, I went to the chiropractor and had another horrible experience with pain. Although the next day I was feeling better, I just couldn’t deal with another day of a draining and (in many cases) a non-functioning body. During a typical day, I’m taking around 4-5 pills and I believe my stomach has healed enough to allow it. I’m also taking 3 Zyflemends a day and always trying to focus on anti-inflammation foods. 4/4 went to the chiropractor with better results (2X easier than on 3/29). Sleep continues to be horrible as I wake up 1-2 times per night and I have a very hard time getting out of bed.
Swollen ankles – Both of my ankles are now swollen (right is worse than the left). We have a theory that it is something missing in my diet and hope the tests will help out. The swelling by 4/4 has gone down, but still prevalent.
Continuing Apex Energetics Proglyco-SP 90 (regulates hypoglycemia’s blood sugar & adrenal glands). I take 2 in the morning, 2 whenever during the day & 2 before I go to bed. I don’t get the “must go” feeling in the middle of the night & I don’t get my nightly sweats.
On 4/2 started taking Magnesium Glucomate. The ND states it works as a muscle relaxant. It can be difficult to take with any meal because it requires 8oz. of water per serving with food (I don’t drink water when I eat).
Enbrel: It has been 6 1/2 weeks since my last shot.
My lowest weight was 136 lbs. and a BMI of 19.04 earlier on in the week, but have increased to 138lbs. & a BMI of 19.38.