Can Spouse Get Medical Leave Time Off to go with me to AP?

[lisaed]

Hi Sharon, My heart goes out to you. 20 years is a long time to be so sick, but at least your on the right track. Dr. S sounds like a really good Dr. If asked he will probably do whatever he can to help you. Btw your dog is sooo cute. Dogs can really cheer us up when we are down or not feeling well, don't they? It's almost like they understand what we are going thru. Well I hope everything works out for you. We are all rooting for you. 🙂                 Lisa

[sjess]

Dear Judy,

Thank you so much for your encouragement and prayers. I appreciate them very much! :blush:

I am feeling a little overwhelmed at the moment. It is good to know Dr. S will help me arrange things. He sounds like a wonderful man. I will tell him of all the good things I have read about him on this site.

BTW, this picture of me is quite old. I am sitting here with greasy hair, haven't had a shower for weeks, wearing sweatpants and sweatshirt I haven't changed in days, haven't brushed my teeth in days (I really worry about cavities) eating potato chips and Oreos for lunch, and worst of all, I've gained about 75 lbs since that picture–ugh! I feel awful. This is the heaviest I have ever been and I don't have the energy to do anything about it right now. I guess I'm trying to say I feel like I'm at the end of my rope…just gotta hang on now til I see the good doctor.

I got the NAC and probiotics ordered online and they will be on their way soon. I already have some probiotics and started taking them the other day and was amazed at how much better my insides feel. I've been taking a vitamin pill too. Feels good to be doing something good for myself.

[JBJBJB]

[user=1956]sjess[/user] wrote:

I guess I'm trying to say I feel like I'm at the end of my rope…just gotta hang on now til I see the good doctor.

Sharon,

I hope you will get your thyroid checked. For a while, I felt so tired, no energy at all…. I worked, took care of two kids and a husband, also went to school,did some church work, was a faculty fellow for student residents…..driving my kids for their piano lessons, golf and swim practices…..:dude: at the end of each day, I felt like at the end of my rope, too.

I got some idea of testing thyroid from this board. I went ahead. I found I had low thyroid. Since I was put on Amour thyroid, I have more energy. Of course, I also cut down a lot of activities.

What I am saying is get your thyroid tested. You will feel a world difference. JB

[sjess]

Dear JB,

That's a good thought. I don't remember when it was, but the last time I had my thyroid checked it was okay. Might not hurt to have it checked again.

I have been going downhill for a long time and it has gotten worse in the past year after I took cytoxan for 6 months. My system didn't deal with that drug very well and I'm still trying to get my feet back under me.

Sorry for venting…I just needed to talk about it and figured people here would understand. Thanks for listening and caring. 🙂  I really am hopeful AP will turn this around.

Sharon

 

[JBJBJB]

[user=1956]sjess[/user] wrote:

Dear JB,

That's a good thought. I don't remember when it was, but the last time I had my thyroid checked it was okay. Might not hurt to have it checked again.

I have been going downhill for a long time and it has gotten worse in the past year after I took cytoxan for 6 months. My system didn't deal with that drug very well and I'm still trying to get my feet back under me.

 

Sharon,

I understand. Thyroid do change. People like us need to be checked at least once a year to make sure we are okay. The standard of “normal range” of TSH has been pushed to 2.00 or lower. I was at 2.4 when I became ill. After being put on prednison and other medication, I was at 5.08, later went a little higher than 6.0.

With your big weight gain, perhaps something is not working.

Talking about Cytoxan, my rheumy insisted on get me hooked with Cytoxan. I told him I wanted to research on it. After I read the drug information and side effects, and also patients complaints, it scared the daylight out of me.

Since I have lungs involvement, my rheumy said, if you are not going to use Cytoxan, it's a huge mistake—by the way, you have to use something to control the inflammation. So I ended up with plaquenil. I only took it for less than 5 months.

I really feel for you. I pray you will be able to turn the table around.

JB

 

[sjess]

Hi JB,

I put off my doctor for years on the cytoxan. Didn't want to take it. I understand you not wanting to take it. He wanted to put me on a drug for osteoporosis and after researching it I decided I didn't want to take the risk of gettig one of the “rare” side effects.

You know, when I was on cytoxan they put me on an antibiotic too 'cause you'll basically die if you don't. I was wondering if people taking cytoxan show some improvement because of the low-dose antibiotic they are on and not because of the cytoxan. Wonder if they had a control group just on the antibiotic?! That's just a thought I had after fiinding AP.

[JBJBJB]

[user=1956]sjess[/user] wrote:

Hi JB,

You know, when I was on cytoxan they put me on an antibiotic too 'cause you'll basically die if you don't. I was wondering if people taking cytoxan show some improvement because of the low-dose antibiotic they are on and not because of the cytoxan. Wonder if they had a control group just on the antibiotic?! That's just a thought I had after fiinding AP.

That would be very interesting study!!!

[Eva Holloway]

sjess,

I have been reading your notes in the personal side, I was on cytoxan for a year and for several years on Prednison plus I was on Enbrel and Cellcept.. The Prednison made me gain lots of weight and when I finally came off it I started to loose the weight. It took awhile but it came off, not only that I started to have a lot clearer mind, less brainfog as most of us call it. I also have interstitial pulmonary fibrosis, and also Dermatomyositis. I found NAC (supplement) will help with the pulmonary fibrosis.

Have you been able to make new arrangements with Dr.S. the sooner the better you start with the AP the sooner you will get into remission. Just stay positive that you will go into remission.

Eva:D

Eva Holloway

[judy cash]

Eva,

Have you heard from Sharon (sjess) ? I have been wondering how she is doing and if she went to see Dr. S.    Has anyone else heard from her?   I'm worried about her. I sure hope she is o.k. Maybe I will PM her.

Judy

[sjess]

Hi Eva and Judy and Everyone,

I'm still here. I've been in a holding pattern waiting to see Dr. S. I had to cancel my appt. on January 25th because we had a bad ice storm and the power was out at our house for 5 days! Luckily we were able to get in at my mother-in-law's house and use her generator. So we kept warm the last couple of days. Thankfully, the power is now back on. Then, on the day we were supposed to go to Ida Grove, there was a bona fide blizzard! Couldn't see very far for the blowing snow, wind 50+mph. Not good traveling weather!

I called Dr. S today and now have an appt. with him on Feb 15th. 😀 Hopefully the weather will be much better then! So, I've been writing in my journal mostly.

Eva, thanks for what you mentioned about the prednisone. I must have been channeling you 'cause that popped into my head the other day. It really helped me feel a lot better about myself when I realized the prednisone could have been affecting me and that its effects should wear off. Actually, yesterday and today were much easier eating-wise…yay! I'm glad to know about the brainfog lifting too 'cause I've really got a bad case of CRS!

Judy, thanks so much for your interest and concern. I'm doing okay. Mostly tired and depressed at times. I have joint pain in my lower back and hip that really limits me and very short of breath. I'm hoping AP will help with that. The waiting is difficult. I've gotten myself busy doing some genealogy work and that is helping take my mind off of things.

Thanks for checking in with me. Will be sure to let you know when I see Dr. S in two weeks.

Sharon

[Eva Holloway]

Sharon,

you can always talk to us on this side too and that may help to cheer you up some. If you go to the post about the pictures you also will have a good laugh, we went off the deep end and really don't know who to blame, but we are having fun, it should be that way sometimes.

Find out from Dr. S if you could take NAC, it helps with the lungs. After you off the prednison for awhile you will notice that you don't want to eat everything in sight plus more, I have been there. Since you home bound with the cold weather it's hard sometimes to not eat, I took my car and went to the park evenso I couldn't walk much or to the mall and pushed my wheelchair just to get out of the house.:(

Eva:D

 

Eva Holloway

[sjess]

Is it okay to talk about personal stuff on this side? I read that reminder from the board to stick to stuff about AP and I wasn't sure.

Thanks Eva,

Sharon

[Eva Holloway]

Sharon,

yes this side is for sharing but also asking questions when you don't feel good or even if you have a great day, everyone is always happy when we have good days and are starting to get better. We will encourage each other when we are down and that means a lot to many people because their family members don't always understand how we feel or they don't want to hear how we feel, or it is even beyond them because they know we hurt but can not do anything about it. I think even my husband who is a very PATIENT person sometimes doesn't get it. He has been around this now for over five years.

Eva:D

Eva Holloway

[Margaret Mueller]

Those folks in Ida Grove are something special.

[A Friend]

SJess,

I'm sure you've already thought of this, but if not, be sure to bring copies your previous lab work with you, if you have copies, or if you can get copies now.  From my own experience of having gone to Dr. S, this can be very helpful to him  with decisions and diagnosis, and for your forms.  If he still does things the way he did when I went, the first thing after he sees you in the morning, he will send you to the hospital lab for a blood draw, and a specimen will be sent to the lab in MD. 

Also, a very good thing to know for insurance purposes is that IVs are to treat “an infection” (i.e. mycoplasma, etc.).  FDA has approved the IVs for treatment of infection; however, the IVs have not been approved as “treatment for RA” etc.  So, for the IVs to be paid, the diagnosis needing IVs should be submitted this way. 

(This is the way it was when I went a number of years ago; and I haven't heard of it changing since then.  When my hospital charges were submitted the wrong way,  my 5 days of IVs were not covered.  However, as soon as I inquired about this through my insurance company, they checked into my lab results and refunded my money.  And, they paid for the IVs every 6 months for the next 2-1/2 years I had them. 

Good luck to you and your husband during your visit.  I consider the decision to go to Ia. one of the best ones I've ever made.  (It was this time of year the first time, and blizzard weather!) 

AF

[Author]

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