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Posts (113)

1 day ago · Grover's disease in Skin Health

@gardeningjunkie , just wanted to say, I also take the same meds for cold sores as your husband. They definitely help. I stopped taking them daily, and start up as soon as I feel the first tingle. Also, I found a wonderful ointment on called L Lysine, 1st ingredient is Lysine, comes in a small jar, from Basic Organics. It has an expiration date so you know its fresh. I apply with a Qtip to affected area, sometimes around my nose too. I get very deep sores that bleed and this ointment helps speed healing, as well as the meds. I buy from Amazon for around $6.00. Just a thought for your hubby.

Fri, Oct 11 7:19am · Osteoporosis in Bones, Joints & Muscles

I had a lower back molar that possibly needed to be extracted. My dentist refused to remove the tooth once she knew I had taken bone meds. She felt the risk of jaw fracture wasn't worth removing the tooth, and suggested a second opinion, which i did not pursue…the tooth doesn't cause any real problem. At the time, i had already stopped the meds for at least 1 yr but my drs have told me, they stay in the system up to 4 yrs. Actonel had caused me uncomfortable body aches which had me limping after 15 of walking. I'm trying to eat bone healthy…i have not had another bone density done yet.

Tue, Oct 8 4:51pm · MGUS and osteoporosis? in Bones, Joints & Muscles

@ginger, so sorry I didn't see your post. Seems I'm not getting notifications. I'll fix that🙂. For bone broth, there are many recipes online. The way I do it, is with beef marrow bones I buy at my local supermarket, meat dept. Grass fed are best, but I've not found them. So I first broil the bones on lined cookie sheet, seasoned with pepper/salt. This melts out plenty of the fat, and adds nice flavor. I then boil them in a HUGE stock pot, with a splash of apple cider vinegar(important)
Once a full boil comes, lower to a very low simmer for a minimum of 36 hours. I leave it on overnight. Added benefits I do are a bunch of fresh parsley, 2 cloves of garlic. It's very long process…when it's all done…cool, chill in fridge, then skim off all fat. I add some tumerick and fresh ground black pepper (catalist for tumerick). I separate batches and freeze. You can add this to your recipes or enjoy a warmed cup full.
I haven't made it in a while, but I'm eating my spinach, broccoli etc. I also have not sceduled a bone density test yet. I had to have a bone marrow test done in June because my bloodwork shows some concerns. No excuse for not taking a bone density, just alot on my plate for now, and family issues. I'll be seeing my oncologist again late October. Check online for bone broth recipes 🙂

Sat, Sep 14 5:04pm · Grover's disease in Skin Health

I haven't posted here in a while, but some of you may remember my posts with pictures of my rashes. I'm a patient at Mayo clinic, and had several skin biopsies, with the last results stating, resemblance to Grovers disease. My last terrible bout was 1 yr ago (posted pics then). I was literally sick with chills and fatigue. This year, I'm doing great, with an occasional spotty rash, which I get under control with my prescription cream within 2-3 days…then I stop applying. I just want to mention, after my 5 years of this tormenting rash, I've tried too many alternatives for help, which nothing has worked..too much to mention here, but I have mentioned in past posts, if anyone is interested….home remedies, topicals, diet, and so on. I have also tried cilantro mentioned here…however, I wasn't experiencing anything severe with rashes. I find it baffling that this year, I've changed nothing…I'm outside in Florida heat, walking 2-3 miles, gardening, and more, and I'm doing just fine. I shower sweat off immediately, even 2x daily if needed, and mainly stick with Vanicream soap, moisturizer. No meds, no cilantro, no further changes in diet, an occasional application of prescription cream if needed. I just cant figure…neither can my drs. All said, looking at my past, it's very possible I may experience another severe outbreak…I just wish I knew what causes it. Appreciate the research and experiences here…hoping everyone finds a sure cure!!

Fri, Jul 5 1:21pm · Delayed pain after bone marrow biopsy?? in Blood Cancers & Disorders

I got through last night, no significant pain, and i finally slept, but once I got up this morning, I was uncomfortable and unable to sit in one position while having coffee. Took 2 Tylenol extra strength and went about my day. Driving hurt, but home now, cooking, etc and it's not bad. So weird…I don't understand why I felt all better, then it came on. Maybe giving my dog a bath set something back..I did have to lift him. Hes close to 70 lbs.
No worsening pain or discomfort, so I'm going to wait before i call drs. I have appointment again with my oncologist in about 3-4 months.

Thu, Jul 4 9:42am · Delayed pain after bone marrow biopsy?? in Blood Cancers & Disorders

I had it done at Mayo Clinic. I guess I can contact my care group, but I know its gonna be, you have to come in, maybe xray, maybe MRI doubt a simple diagnosis…So, I'm trying to give it time in case its something I did, and needs to heal. I know they said 1st week not to do anything strenuous, but this came on after 2nd week. Im kinda fed up with myself because its always something to bug me. It was just about completely all better, I wasn't feeling any discomfort…then BOOM!!
Thanks everyone…I'll post back in case I have to call. Was wondering if anything experienced this.

Thu, Jul 4 6:51am · Delayed pain after bone marrow biopsy?? in Blood Cancers & Disorders

I had a bone marrow biopsy in back hip on June 14th. By the 2nd week I felt almost completely better. Then for some unexplainable reason on the 17th day after, I had very uncomfortable pain around the area of biopsy and up towards my back left side waist. It seems to let up, and actually feels better walking, but sitting and during night I can’t find a comfortable position. Cant sleep.
I’m trying advil, or tylenol, and biofreeze. Tomorrow will be 3 weeks since biopsy.
No infection, no fever…could it be nerve pain? I saw my oncologist for follow up on the 27th, and I felt fine, so I never complained. I wonder if its something I did that’s making the area hurt? I did give my Lab dog a bath the day I noticed the pain, and lifted him in the tub, but I was already feeling healed.
Anyone experience delayed onset of pain after a bone marrow biopsy? What to do…I dont want anymore tests…hopefully itll pass??

Sat, Jun 29 7:00am · Grover's disease in Skin Health

My Dermatologist from Mayo prescribed Triamcinolone Acidtonide cream 1%. I've had awful rashes, wide spread since 2013. Thankfully, they come and go! But sometimes last for months. Last skin biopsy a year ago, shows resemblance to Grovers disease, but I have MGUS, which may contribute to on set. Usually I'll get some pop up rashes, which I get under control with the cream. If they're wide spread and I'm feeling sick from them, chills, exhaustion, tormenting itching, and lack of sleep, I'll apply the prescription cream, then wear a wet cotton tshirt (wet wraps), for about an hour, all recommended from my Drs, and take Hydroxyzine, and allergy pills. Side effects are miserable, but itching subsides. No hot water in showers, and told to use only Vanicream soap and cream. I do try my best to avoid lengthy sweats, but difficult here in Florida. As for Cilantro, I've tried eating bunches in a salad, but I honestly can't say it helped…but I will try it again should I experience a wide spread. Hope you all find steady relief!!