5 YEARS!

There's so much I want to say.

I'm overwhelmed by the fact that it's been 5 whole years since my transplant. Those of you who have been following know that I've had my ups and downs, both physically/medically and emotionally. It's certainly been an eventful ride.

Here's what's been going on.

In September of last year 2012, I was casually going through a local online bulletin board when I came across an advertisement for a part time job in a local girls high school. I responded to the ad, went for the interview and was fortunate to get the job. I haven't held a job since I was pregnant with Jacob in 1987. I can't begin to tell you how much I enjoy it and how I believe it's one of the best decision I've ever made. I work in the afternoons in a wonderful & inspiring environment surrounded by some of the most wonderful people I've ever had the good fortune to meet. I consider this job, and way it fell into my lap, to be one of the greatest blessings in my life.

Jacob and Yasmin are in a engagement holding pattern. They're still happily and lovingly engaged and living in Arlington, Virginia where Jacob is continuing at George Mason University School of Law. I think they want to wait until after he graduates before tying the knot. Whatever they decide is okay by me. I love them both and will support their decisions.

Rachel and Jamie are living nearby and.... they have a beautiful baby girl. Sara Bracha (def: Princess Blessing) was born in August and is absolute joy! She is named for my Grandma who passed away in February, 2008, just a few months before my transplant -- and 5 weeks before my father passed away. (2008 was one helluva year)

David and I are no longer together. I guess we just weren't strong enough to withstand some of the challenges with which we were faced. It's very sad but, at the same time, a relief. I was so terribly unhappy for such a long time, I feel like I can finally breathe.

At the moment, Mom is in Israel. She's been living in Florida year-round but has been having a great time traveling. She's due back right before Chanukah/Thanksgiving. I miss her. It'll be good to have her here.

As my 5 year mark approaches this Sunday, I've been spending a lot of time thinking and reflecting. I've been so blessed to be surrounded by so much love. I've been wondering why some people "make it" and other don't. I've been thinking about whether going through what I went through is a blessing or a curse. I feel that I have become a better person but I weep at the thought of what I lost and I can honestly say that I find it hard to believe that I actually went through all that I did.

I have more to share but I feel like this is a good start.

Thank you for sharing the road with me and for your continued love and blessings.

Believe in miracles! I still do.

Back by Popular Demand...

Now I know it's been a really, really long time since I've posted but, in this case, that's good news.

Since discontinuing the photopheresis last September, the bulk of my time has been spent trying to get off of the Prednisone. It's been a real struggle. Every time I'd get down to a slightly lower dose, I'd have some sort of setback. Thank God none of them have been life threatening, only very discouraging. Things at home have been very stressful and the Prednisone only added fuel to THAT fire.

Very slowly, and I mean VERY slowly, we've been decreasing my dose. Well, YeeHah! Last Thursday, Dr. Schuster said the magic words... "OK, stop the Prednisone." You can imagine my elation after soooo long!

Since I'd only been taking it once a week, on Thursdays, I haven't officially missed a dose yet. But tomorrow... well, that's another story. This is now one very happy camper.

I remember a time, not so long ago, when I was feeling somewhat better but I didn't believe that I'd ever again feel really well. Well, I can say now, that with God's help and some very talented doctorin', I'm really feeling well -- almost like the old me.

My hair is grown back, with the decrease in Prednisone my weight has gone back to normal, no longer puffy, and my energy level is great. At my monthly check-ups, I'm always surprised to see my blood tests are normal!! Really, that's the first time in my life!!

I realize that, because I didn't post in such a long time, I never mentioned some of the wonderful changes that have occurred recently. First, my daughter Rachel met Jamie and they got married last March. It was a magical night and, besides the normal mother of the bride tears, I shed tons of tears of disbelief.

Just a few short years ago, I wouldn't have imagined that I would be able to be at Rachel's wedding. But there I was -- walking my baby girl down the aisle. Like I said... Magical!

Then, about three weeks ago, (hold on to your hats) I went skydiving. That's right, I jumped out of a perfectly good airplane! (See the video here!!) Less than 48 months after my bone marrow transplant, I was soaring through the air... Truly exhilarating. I loved it!

Next on our hit parade, last Wednesday night my son Jacob became engaged to the very lovely Yasmin Spiegel.

We love her very much and could not be happier. They're planning a 2014 wedding, since Jacob is currently attending George Mason University School of Law in Arlington, Virginia and they want to wait until after graduation and the Bar.

An interesting tidbit...
David was recently contacted by Gift of Life Registry. It is an organization that tries to find bone marrow donors for those who need it. Wouldn't ya know it? He's a match!! He is going for further testing on Monday and then, if all goes well, he will be a stem cell donor shortly thereafter! Who said God doesn't have a sense of irony?! Gotta love it!

Anyway, I'm sure there's more to tell but I've exhausted my updating abilities. I'm happy to report that everyone else is doing well, thank God.

As always, I'm deeply grateful for your continued interest, thoughts, prayers and good wishes. You can't imagine the strength I get from each of you! Thank you from the bottom of my heart.

Believe in Miracles!!

More later,
xoxo
L

Trying to Move On

I know it's been a very long time since I last posted. The Hickman catheter that I had placed back in March was removed a couple of weeks ago. I had it for about 8 months. It was difficult to live with and I'm just glad it's gone. I had the photopheresis treatments twice a week through August. Then it went down to once a week for 7 weeks. They finally removed the catheter on October 11. The treatments themselves seem to have been beneficial to some degree. My skin appears better -- smoother and better color. My eyes are still giving me trouble and I think it's from the prednisone.

At one point during the treatment, I got sick. Just plain old sick. Rachel had come home from Israel with a sinus infection and I missed a night's sleep while sitting at the airport and I just got sick. But the docs, doing their due diligence, assumed it was GVHD and increased my prednisone from 7.5mg daily up to 20mg daily. I can't begin to describe my despondence. Seriously. The whole point of everything at this stage is to get me off the prednisone and the thought of increasing..... well, let's just say it was enough to throw me into a serious funk.

Since then, I've been decreasing gradually and am now taking 10mg daily. I'm very, VERY eager to be done with it for a gazillion reasons. The side effects are so yucky. I've actually forgotten how I look with a regular non-puffy face with non-puffy eyes. Secondly, the insomnia is crazy! I take Ambien to sleep every night but for some reason, some nights, it just doesn't do the trick (like last night). Third, they say it makes you crazy. I'm definitely more emotional and I can cry at the drop of a hat. My family sees the crazy part more than I do. I guess that's one of the benefits of crazy. Also, there are things I want to do with life and I just can't yet. It seems like it's all on "hold" until I can finish with the prednisone.

I'm thinking of going back to school, maybe finding a job, doing some traveling. I really gotta move on.

If there's anyone still out there... anyone still reading this... I'd love to hear what you have to say. Love to hear your thoughts, suggestions, any feedback at all. I thank you so much for being there and for your ongoing love and prayers. Believe in Miracles!

6 Treatments Under My Belt

The last few weeks have been a little bit crazy. On Friday March 4, I had a Hickman Catheter placed. The procedure was uneventful. When I got home, and as the local anesthetic wore off, I started having a lot of pain in the area of the placement. Over the next couple of days, the pain continued and I was living on Percocet around the clock.

The following Monday, I was scheduled for my first photopheresis treatment. David took me and it went very well, except for the continuing pain from the catheter. In essence, the treatment is as follows. I'm hooked up to a blood-filtering machine. A pre-determined safe volume of my blood is removed from me and collected in the machine. It then spins and separates my blood into components, collecting the "buffy coat" for treatment. As I understand it, the buffy coat is a mixture of white blood cells and platelets. The buffy coat is then mixed with a chemical called Uvadex that makes it sensitive to UV light. The Uvadex-treated blood is then exposed to UV light and then, I get it all back. Very hi-tech, very sci-fi.

It takes a couple of hours and, add to that the hour and a half travel time between my house and Stony Brook in each direction and you've got yourself a whole day.

I felt fine after the first treatment except for the continued catheter pain. The next morning, Tuesday, I woke up and I was in a ton of pain. The catheter was really hurting me. I couldn't sit up or stand up. I was ok as long as I was laying down. I called the hospital and they told me to come in. So Illana drove me back to Stony Brook and they decided that the catheter must have been touching a nerve or something and that they were going to pull it out and put in another one on the other side. It was a very difficult day for me. They were giving me pain killers but I was still in pain and .... it was just real bad.

Thank God things got better after that. This new catheter has been working well and has not been too painful. Even though I hate having it, after the last one, I can deal with this. I've had two photopheresis treatments a week for the last three weeks. Friends and family have been driving me there and so many have offered to drive me and I'm truly, truly grateful. This past Wednesday I drove myself for the first time and it was really ok.

Last Wednesday, my BFF Sunshine drove me. She is an amazing friend and she thought she was doing her good deed for the day.... Little did she know. I had my treatment and it went great. We gathered up our stuff and were on our way out of the hospital when I took off my glasses to find my valet parking ticket. She looks and me and says "what's up with your eye". I'm like "huh??". She asks again and I have absolutely no idea what she's talking about. So she tells me that we have to go back to the blood center. I have no idea what's going on. We go back to the blood center and the nurses AND doctors take a look at me and start freaking out! They're all "Oh My God!". They were scaring the hell out of me. As it turns out, I had a hemorrhage in my eye and, because during my treatment I get Heparin, it turned into quite a bleed. I LOOKED LIKE A MONSTER!! The entire white of my eye was full of blood and it was bulging! Really, really gross. They wouldn't let me leave until my doctor saw it. They called Dr. Schuster and he said he'd be there in half an hour. Two hours later....we're still waiting for him. During this time, I'm getting more and more anxious, thinking all sorts of crazy, scary things. He finally arrived, took a quick look and said "it's nothing", "it'll go away", "it has nothing to do with your blood counts because they're all great". We went home but I was still very uneasy about it.

The next day, I called my friend/neighbor Arnie who is an ophthalmologist. He was amazing!! He came over and took a look at it and reassured me. My vision was unaffected and he said that it would take a couple of weeks to clear up. Arnie, if you're reading this, I can't thank you enough. You're the best! It's been over a week and it's starting to look a little better (but I still look like a monster).

I know I'm writing a ton, but it HAS been a while. Now, how do we know if this treatment is working? Good question. So far I don't notice any changes. The true test will be when I can discontinue the Prednisone completely and NOT have a GHVD flare. I have an appointment with Dr. Schuster on Monday and I am pretty sure that we will reduce my prednisone at that time, I'm assuming from 30mg/day to 25mg/day. It's going to take a while but I'm hopeful.

Since my transplant, I've been told to stay out of the sun. Now, with photopheresis, it's REALLY important to stay out of the sun and to wear UV protective sunglasses. The exposure that my blood gets to the UV light makes me much more susceptible to sunburning and my retinas susceptible to UV damage.

This morning I got a call from the doctor telling me that I have C Diff and starting me on Flagyl...never a dull moment.

I think we've pretty much covered my whole deal. Now for the important stuff. Thank God the family's ok. Mom is doing well in Florida, loving that warm weather, hanging out with her friends and really enjoying herself. She still has the dizziness from her procedure but we're all hoping that it will go away, as her doctor told her it would. Most of the time, she's great.

David's doing well...working too much and dying for a warm weather beach vacation! I'm sure there's one in the planning stages. Jacob got accepted to George Mason University Law School in Arlington, VA. He's still waiting to hear from a couple of others, but he's pretty excited about this one. We're very proud of him! Rachel is in Jerusalem learning and teaching and being the best Rachel she can be. We're awfully proud of her, too. But we're not so thrilled that she's so far away. We miss her terribly.

I've got to finish preparing for the Sabbath. Thank you, dear readers, friends and family for your continued interest, love, support, prayers and good wishes. I couldn't have made it this far without you. Have a good shabbos and and great weekend. xoxo
Leah

Believe in Miracles!!

Update March 2011

I haven't posted here in over 7 months. I've been caught in a vicious cycle between chronic GVHD (graft vs. host disease) and Prednisone. Every time I try to wean off the Prednisone, the GVHD flares and I've got to go back on it. Luckily, there's a relatively new treatment for GVHD called Extracorporeal Photopheresis or Photochemotheraphy. On Friday, I had a central line inserted and I'll be starting the treatment on Monday. I'll be going to Stony Brook University Medical Center for the photopheresis twice a week for the first few weeks and then, the schedule changes as we progress.

I'm very hopeful about this and I'm really ready to start feeling well again. I thank you for checking in and appreciate your prayers and good wishes.

I'll keep you posted.

Believe in Miracles!

Leah

Been a real long time

I haven't updated this blog in months. I suppose that that is a good sign. It means that I've been spending my time getting back to living my life and spending less time revolving my life around my illness and my bone marrow transplant.

So what brings me here now? Sadly, a minor setback. Generally, thank God I've been feeling pretty good. My blood counts are almost all normal and my energy level has been pretty good. I have occassional problems with my skin. It dates back to February, 2009 when I was hospitalized with an enlarged liver and had all of these lesions which were never identified, although they were biopsied twice. I still get them, they're still painful and I still don't know what they are. It seems obvious that they're some kind of chronic graft vs host disease since they flare up when my prednisone gets reduced.

My eyes, which have been perfectly fine for months and months, are suddenly bothering me again. Immediately after my transplant they were very swollen and watery. The haven't bothered me in months and are now starting to feel weird again.

And last Monday I woke up at 6am feeling very nauseous. After getting violently ill 6 or 7 times I got back into bed. Next thing I know, I'm in the back of an ambulance. I was taken to Stony Brook University Medical Center with a fever of 104. Turns out I had a urinary tract infection. After 3 days on IV antibiotics, they sent me home with oral antibiotics.

So, I'm home but I feel like the wind has been taken out of my sails a bit. Just those few days in the hospital really set me back. And the Cipro made me real, real dizzy. I'm frustrated (as always) and impatient (as always) and want to get back to doing the things I want to do.

Now I think I'm up to date. I still have to see a dermatologist about the skin stuff. And I've also had some GI issues that are still being sorted out. But I'm working on it.

Thanks for checking in and for your thoughts, prayers and good wishes. I am truly blessed with the best friends and family in the world. Without the love and support of all of you, I would not have been able to get through this.

Happy Mothers Day

First, I want to wish a Happy Mothers Day and happy everyday to all of you wonderful Moms out there. I had a wonderful day. David and I went to see 'A Behanding in Spokane', a Broadway show starring one of my very, very favorites, Christopher Walken. It was really wonderful, in spite of the fact that the weather was very UN-Mother's Day-like. It was pretty cold and very windy. I'm glad that I didn't plan to barbeque. After the show, we came home and we went out to dinner with my children, Jake's girlfriend Yasmine, Illana and Keith and their girls. It was nothing fancy but really, really nice. All in all, a very nice day.

Now for the health update... I saw Dr. Schuster on Friday. Luckily (or maybe not so luckily) the sores that had been bothering me on my legs were no longer inflamed and my ankles which had been swollen were no longer swollen. I still had some skin irritations and fatigue and pain in my muscles and joints. Thank God my blood tests were all normal. He said that it seems to him like a chronic gvh (graft vs. host) flare and he put me back on 20mg of Prednisone and Nexium to prevent stomach problems. He wants to see me in two weeks and hopefully, at that time I'll be feeling better and we can begin weaning off the Prednisone. I hope it goes as planned because I'd like to spend as little time on the Prednisone as possible.

I took my first dose yesterday morning and my second this morning. I think I am seeing an improvement already. I think I am starting to feel a little less "out of it" and, although I'm still achy, my joints and muscles seem to be less painful.

I hope you're all doing well, enjoying springtime and spending time with people you love. As always, I thank you for checking in and for your continued thoughts, prayers and good wishes. Believe in Miracles.

Laid Up Again (sigh)

I'm not feeling too well today. My skin is bothering me and I'm very achy. Also, my stomach is bothering me. Friday night I slept from 12:30am until 10:00am. Then I slept another 3 hours during the day Saturday. I should have figured that there's something brewing. Hopefully it's just a virus or something. I'm spending the day in bed and hoping to wake up feeling better tomorrow.

I'll keep you up to date. Thanks again for all your good wishes. Believe in Miracles.

UPDATE 5/5: Did lots of online research of my assortment of symptoms. Always a risky venture. I think I'm having some kind of gvd-induced autoimmune reaction from coming off of all the meds. I went to see Dr. Freidman, my internist on Monday. He drew blood and sent me for a bilateral venous doppler to rule out any DVT. I've got pain in swelling in both legs but I'm pretty sure that it'll be negative. Anyway, I think that if it were positive they'd have gotten in touch with me by now. I'm waiting to hear the results of the blood work. I spoke to Dr. Schuster and he wants to see me on Friday. I'm feeling pretty rotten, very, very tired, achy and swollen, assorted skin rashes, etc. Not a pretty picture.

I'm impatient for the results and want to get to the bottom of this asap so that we can treat it and move on. I had been feeling so well and had been walking every day and really, really enjoying it. I'm trying not to get too frustrated and will keep you up to date on the situation.

Thanks again for everything.

small bump in the road

I've been off all meds except for the one and I've been feeling pretty good. I've been walking every morning and am beginning to make plans to go back to school. Really, all good, Thank God.

But a couple of residual spots on my legs that have been there since February 2009 have "flared up". I went to see my friend Suzanne who is a dermatologist. I gave her the whole background story about how these lesions all popped up when I was in the hospital back in February and how they had about a gazillion doctors check them out and an infectious disease specialist check me out. She took a look at them and said, "Hmm, they look like erythema nodosum. Why didn't they call in a dermatologist?" Well, DUH. They did call in a dermatologist who looked and biopsied and still had no idea.

So now, from what I've been reading, I think she's right on the money. I called Dr. Schuster and brought him up to date and he said that I ought to do whatever Suzanne suggests and to let him know how it is in a couple of days. I am wearing a compression stocking and keeping it rested and elevated (when I'm not out running errands) and taking Advil. Though these measures do provide some relief, I'm still in a lot of pain, and not only in the one spot on my ankle, but in a few others too. She said that the Prednisone may have been suppressing this inflammation and now that I'm off it it's flaring up. That makes sense. But I've also recently discontinued a few other meds. So, for now, who knows?

I'm going to continue trying to rest it but I think I'm going to try to find something stronger for the pain because I'm really uncomfortable. David was doing some research and thinks that perhaps I ought to see a rheumatologist. I'm going to give it a couple of days and see how it is after the weekend.

Thanks for checking in and for all your good wishes and thoughts and prayers. Have a wonderful weekend, a good shabbos. Believe in Miracles!

Stuff I left out

Hi. I was reading over my last post and I can't believe that I forgot to include some really interesting information.

First of all, at last week's visit with Dr. Schuster, he took me OFF ALL MEDS except for one. Incredibly, I now take one pill a day. That's right, ONE PILL A DAY!!! It's unbelievable to me. I mean, I was taking so many meds, so many times a day...I could barely keep track and now...well, now, it's one a day! The one we're continuing is Valtrex, which is anti-viral. The reason we're not disconinuing it yet is because Valtrex prevents the virus that causes Shingles. So, we're still trying NOT to get that.

OK, now the second bit of news. I want to tell you about "my project". When I was in the hospital for the 5 weeks for my transplant in November, 2008, the ordeal began with a week of chemotherapy. After that, as expected, I lost my hair. Unless you've been down that road, you really don't realize how cold your newly bald head gets. I was so chilled.

Luckily, one of the nurses brought in a basket of handmade hats that someone had donated. From that, I picked one out and it was a lifesaver!

Now for my project. I decided that, since one of my most favorite things to do is needlework, I would start to knit and crochet hats and donate them to patients getting chemotherapy. I've begun crocheting a bunch of them from yarns that I already have.

I happened to mention this to a friend of mine who works at a crafts store and she was kind enough to donate a large bag of yarn for my project. Another friend decided that she, too would like to crochet for this project and ... then there were two.

I'd like to invite you to join me in my project. Either by donating yarn or your talents.


So far, I've been working exclusively in cotton and creating seamless designs for women, men and children. This is something I can do to give back a kindness.

Now you're pretty much up to date. Have a beautiful weekend and a good shabbos. Thank you again for checking in and for your continued thoughts, prayers and wishes. Believe in miracles!!

Long Time No See

Well, it's been quite I while since I posted last. I figure that's a good thing, that things are pretty good.

I saw Dr. Schuster on Friday after 6 weeks. Thank God I got a good report. My counts were amazing! WBC 4.5, HGB 12.1!! PLT 127. Wow! Almost like a normal person.

I've been feeling pretty well. My bronchitis cleared up. I went down to Florida on March 15 and was there until April 14. I had a pretty nice time. Passover was a lot of shopping, schlepping and preparing. Once it was over though, I was able to do some relaxing. I took a drive down to Key West and watched a beautiful sunset from Mallory Square.

Then I spent a couple of days at my Mom's in Deerfield Beach. Then Mom and I took a drive up to Orlando to meet Marsha. We met at Downtown Disney and spent a few wonderful hours together. It was great seeing her and now I am looking forward to the next time..

Though Florida was a nice time, I was really looking forward to getting home. When I left New York it was really winter. Returning to the beauty of spring was wonderful. Going away is always nice, but there's nothing quite like coming home.

Thank God everyone is doing well. We're looking forward to a double college graduation on May 27. I can't believe that both of my babies are graduating from college. Where has the time gone?? I'm so proud of both of them and am really excited about attending the ceremony.

Aside from that, we're taking it all one day at a time. Thank you for checking in and for your good thoughts, prayers and good wishes. Believe in miracles!

After the Storm

Well, it blew like the dickens around here this weekend. There are trees down all over the place and many, many homes without power, including my sister's. Thank God we're all ok, though.

My cold/bronchitis is improving, too. Yesterday I really started feeling better. Just in time for a formal dinner at which my sister and her husband were being honored! (See photo) It was a wonderful time and I felt good. And I was very, very proud of them. Mom flew up on Thursday and will be returning to Florida tomorrow.

I saw Dr. Schuster on Friday. It was a very positive visit. First of all, he said that my lungs sounded clear. That was a relief. Secondly, he discontinued my Prednisone completely. Wow! I've been on that stuff for so long, I can't believe it. Also, I can now eat raw fruits and veggies. I've been sooooo careful for so long I just couldn't wait to go out to a restaurant and order a salad! He also reduced the dosage of one of the other meds. So, I'm really started to taper off.

I asked about my vaccinations...like which ones I'd need to get and when would I get them, etc. He explained that I should actually have the immunizations from my donor (Avram). At the two-year mark, we check and see if I have the titres and, if necessary, have whatever boosters I may need. Maybe none. Interesting and surprising.

Of course we spoke about the fact that I was left high and dry and felt abandoned when I was feeling so sick over the past couple of weeks. He did apologize and explained that while he's changing locations/offices, etc., during this time of transition, there are bound to be some glitches and the phone situation is one of them. He also said that if and when I feel I need to see a doctor, I should probably go to my primary care physician. Unless it's specifically Bone Marrow Transplant related, there's no reason I need to go to see him. Until now, everything went through him. I was not permitted to take any medications with aspirin or ibuprofen. But now, he said I could just go to my PCP. I guess he's pretty much done with me. I'll see him in another month at which time he'll further reduce the meds. Hopefully, this will be a quick and painless process.

On other fronts, everything is pretty good, thank God. I'm leaving to Florida tomorrow with my Mom. I'll be staying with her for a couple of days and then heading down to Miami Beach to prepare for Passover. Am I looking forward to this??? Yes and No. It's going to be a lot of work and I didn't really want to do a lot of work this year. But I'm glad that we'll be together...most of us, anyway. Avram will be working in Arizona so his family won't be with us this year. They will be missed.

Thanks again for checking in and for your continued thoughts, prayers and good wishes. Believe in Miracles!

Friday Afternoon Update

OK, here's the deal. I've had a cold and bronchitis for about a week but it's starting to get better. I had a chest x-ray on Monday to rule out pneumonia and Thank God it was negative. So, I've been taking Vantin (antibiotic) since Monday and started feeling an improvement yesterday.

Another thing going on is the "issue" with my doctor. I don't remember if I've mentioned this before, but Dr. Schuster has left New York Presbyterian Hospital and is now at Stony Brook University Hospital. Needless to say, I totally freaked out when I heard he was moving. I can't imagine what I'd have felt if this were six months ago. I had a choice of staying on with him or staying on at NYP with another doctor. I chose to go along with him. Honestly, now I'm questioning the wisdom of that decision.

Last Saturday, I was feeling really sick. So sick, that I called the phone number where I'd been told I'd be able to reach him or a member of his team "24/7". Not only did I not reach a person, there was an answering machine with a message telling me that the office is closed and that I can leave a message. It didn't even give an emergency number. I couldn't believe it. I was left totally high & dry.

Monday, I still hadn't heard from him and so I called my local General Practitioner. At least I was seen right away. She's the one who sent me for the chest x-ray and put me on the antibiotics. I finally heard from Dr. Schuster late Monday afternoon. I told him what was going on and he said that I should continue with the meds.

I guess I'm kinda rambling on about this but it's really bothering me. I don't know what to do. I'm still on the Prednisone, along with a few other meds (VFend, Vasotec, Valtrex & Nexium). I'm going to have to get all of my vaccinations soon. (Remember all those "baby shots" we all got? Well, I gotta get 'em all over again). Do I change docs?? This is really distressing. Any suggestions?

OK, Thanks for letting me vent. Thank you for your continued support and prayers and good wishes. Have a great weekend, Shabbat Shalom. Believe in Miracles!

Note to Devorah: I hope you're doing well. I sent an email to your gmail address. I hope you got it. If you can let me know, that'd be great. If not, I'll try to reach you again next week. Be strong & stay positive. Shabbat Shalom.

Busy Busy Busy

I'm finally taking a break. For the last 2 days I've been cooking and baking, practically non-stop. I don't mind doing it, in fact I really love to cook. I'm just wiped out now. So, here I am, sitting down and giving you an update.

As of this past Wednesday, I'm down to 2.5mg. Prednisone WEEKLY. That's thrilling to me. I'm really looking forward to being off this medication. The drawback is the withdrawal symptoms that I seem to experience each time I taper off a little more. Twice this morning I had very intense waves of nauseau. They pass in just a minute or two but they're very unsettling. I know I just have to tough it out. I'm just hoping that it doesn't get worse. On top of the "little cold" that I have, I don't want to deal with it.

Everything else is good. The kids are all excited about Purim. I know that they seem a little old for "dress up" but it's really nice to see them all abuzz.

Thank you so much for checking in and for your continued prayers and good wishes. Have a good Shabbos, a Happy Purim and Believe in Miracles!!