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Dealing with MS after surgery...
I know that there are many autoimmune disorders that flare up after any surgery. I'm not even sure if I am having a flare up because of the surgery or if it's because I've been so busy & so stressed that it threw me into a flare. All I know is that I'm completely miserable at this moment and could use some prayers. In a few days, I will be having a home health nurse come to my house to do 3 days worth of IV steroids. 1,000 milligrams each day. In the past, I've had issues with wanting to eat the whole house when on steroids. Thankfully, I won't have the ability to do that but I will still gain some water weight during this process. I don't really care about that really... I just want to feel better.
The picture I attached is from 12.27.18... we bought our kids movie tickets for Christmas so we went to the movies. I love taking pictures with my kids because they grow so quickly and you just never know when you won't have them anymore. We took this picture and I looked at it yesterday... I actually LOOKED miserable too! I had no idea that I was putting off that vibe at that time. I was just trying to give my kids a good night out. I was trying to make it through our Christmas (we celebrated late because they spent a week at my in laws house). Sitting in the theatre was physically disturbing. I was so restless & uncomfortable. I couldn't feel my feet and so very badly wanted to take my boots off. I can't sit for long periods of time so I had to go to the bathroom twice for a 90 minute movie just so I could move around. Didn't really have to use the bathroom. The lights made me dizzy so I looked like I was intoxicated walking out of there. Thankfully, there was only 2 more families watching that movie and they got up a lot too. I drove my kids to the dentist yesterday. We are still established at our doctors offices that we had prior to buying our house in June so it was a 2 hour drive. By the time we got 45 minutes out, I had to pull over to drive barefoot. I just can't do the shoe thing during a relapse. They feel super tight and I can't feel the pedals. I got home last night and decided I'm not going ANYWHERE unless I absolutely have to. I'm praying they get a nurse here before Thursday. So anyways... that was a long drawn out explanation just for me to say I'm nervous about my first steroid treatment after surgery and how it's going to affect my journey... *sigh*
I believe 1,000% that you should find at least one positive in every rant. Well, here's 2. I would have to say that it would be that the first one would be that I made it through Christmas. I felt this relapse coming around Thanksgiving and I tried my best to rest when I wasn't busy. The second would be that I was having monthly relapses from 1/2017 to 9/2017 that ended up being biweekly. In 9/2017, I was put on a different medicine that changed all that. So, I'm blessed. One relapse since 9/2017... I'll take it.
Please pray for me. Thank you!
Re: Dealing with MS after surgery...
Prayers send Michelle! I hope the steroids make you feel better. I was driving myself crazy with weighing daily when I first sleeved, if your like me I would definitely try not to weigh for a bit, if you gain water weight it will come back off but it might be discouraging and stress you out even more.
Good luck!
Re: Dealing with MS after surgery...
Sorry to hear about your relapse. Hoping the steroids make you feel better soon.
Re: Dealing with MS after surgery...
That's a very nice picture. Sorry you have to deal with problems with ms.
I have pretty bad nerve pain, so I can empathize with the pain, pins and needles. I wish you the best, you look great despite what you are going through. I hope the steroids give you some relief! Happy New Year!
Re: Dealing with MS after surgery...
Hey Michelle,
I'm sorry you are having a bad time with a relapse.
Like many autoimmune diseases, there's more people with MS in "cold countries" where there is less sun. Also experiments have shown that someone with MS living the West Indies (sunny all year) who moved to to stay in Europe will be sicker compared to her twin who still lived under the sun all year long. All that to say, after your treatment, if you can, have your vitamin D level checked. Chances are it's low and getting supplements to get you level to an optimum 40 to 45 ng/ml could help your symptoms.
I just had a blood test last week and my levels got really bad suddenly, was ok until September but now it's really low and I saw many symptoms showing up at the same time. I'm back on higher dosage of D vitamin, it's a cheap supplement, and taking a daily dosage can help better than taking a high dose once a month or every two weeks like some doctors advise.
Also about the weight gain: I'm in my third year and the first year, taking cortisone for 3 days could make me gain 6 pounds in three days, would take 2 or 3 weeks to lose it. Because the first year I was eating fewer calories.
Last year I gained ten pounds with two weeks of treatment (cortisone and antibiotics), took me a few months to lose it....today I gained 20 pounds after more than two 1/2 months of really heavy treatment and several issues combined...don't know how long it will take to go back to normal.
But it will go away!!! At least, the treatment keeps me breathing : gaining weight is just a collateral...
Stay positive!! get your treatment and deal with the weight issue later. Now it's time to focus on your health. Being more mobile will also help the weight to go down.
Good luck and take care!
Re: Dealing with MS after surgery...
Thank y'all for your prayers. Keep them coming. My doctor doesn't do on call so I have to wait til Wednesday to get any treatment. My husband is going to pull out my cane, walker and wheelchair out tomorrow in case I need it. I'm okay in the house but I'll need it for when I take my son to his appointment on Thursday and my daughter to her appointment on Friday. Thankfully, my husband will be off work so he can do the driving. I taught my daughter how to make keto egg nog today. We had our traditional New Years Eve supper tonight so come midnight, we are going to sit at the table and make our traditional 'pigs in a blanket' midnight snack. Trying to spend as much time with them as possible as the steroids make me miserable and I turn into someone who doesn't want to be around herself. Lol. My sister and nephew tested positive for the flu, my husband caught a bug and I'm just trying to stay as healthy as I can. I hope that everyone has a wonderful New Years Eve!
Re: Dealing with MS after surgery...
Quote:
Originally Posted by
Sandra3
Hey Michelle,
I'm sorry you are having a bad time with a relapse.
Like many autoimmune diseases, there's more people with MS in "cold countries" where there is less sun. Also experiments have shown that someone with MS living the West Indies (sunny all year) who moved to to stay in Europe will be sicker compared to her twin who still lived under the sun all year long. All that to say, after your treatment, if you can, have your vitamin D level checked. Chances are it's low and getting supplements to get you level to an optimum 40 to 45 ng/ml could help your symptoms.
I just had a blood test last week and my levels got really bad suddenly, was ok until September but now it's really low and I saw many symptoms showing up at the same time. I'm back on higher dosage of D vitamin, it's a cheap supplement, and taking a daily dosage can help better than taking a high dose once a month or every two weeks like some doctors advise.
Also about the weight gain: I'm in my third year and the first year, taking cortisone for 3 days could make me gain 6 pounds in three days, would take 2 or 3 weeks to lose it. Because the first year I was eating fewer calories.
Last year I gained ten pounds with two weeks of treatment (cortisone and antibiotics), took me a few months to lose it....today I gained 20 pounds after more than two 1/2 months of really heavy treatment and several issues combined...don't know how long it will take to go back to normal.
But it will go away!!! At least, the treatment keeps me breathing : gaining weight is just a collateral...
Stay positive!! get your treatment and deal with the weight issue later. Now it's time to focus on your health. Being more mobile will also help the weight to go down.
Good luck and take care!
I get blood work done every 3 months. My vitamin D levels used to be super low all the time but my doctor and I have finally got it regulated. I take 1,000 IU daily. I had to take 5,000 IU daily for 2 months to get it regulated and then drop to 1,000 IU to maintain. I had to have iron infusions for 12 weeks also and then went on iron supplements for a year. Now my iron is fine. I take calcium supplements and vitamin c. I also take garlic supplements. I try to take all natural vitamins and less pharmaceuticals. :)
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Re: Dealing with MS after surgery...
After our night of making pigs in a blanket together....
Re: Dealing with MS after surgery...
Today was my first day of 1,000 milligrams of steroids. Well, I say today because I haven't been asleep yet. I really mean yesterday. My blood pressure has been through the roof. My sugar has been moderate since I'm on low carb now. Migraines and insomnia have kept me up all night. 2nd infusion in 4 hours. I'm so miserable right now. The heartburn is UNREAL! I was told I wouldn't ever need heartburn meds again after my hiatal hernia removal and to stop taking it. Well, I only have heartburn because of the steroids but I've read no zantac after the sleeve and prilosec isn't a fast acting... I'm dying here. Anybody got any advice?
Re: Dealing with MS after surgery...
I wish I knew something to help you Michelle...
It sounds awful.
I sure hope you will figure out some sort of relieve very soon.
Re: Dealing with MS after surgery...
Try Tums....and cold milk for quick relieve, but you should take a PPI for sure. It could help in a few hours sometimes.
Cortisone does the same to me, I'm sleepless for months now, my stomach is upside down (but I do have an new hernia so..).
Take care!
Re: Dealing with MS after surgery...
I called my surgeon after my infusion today. They told me I could take Prilosec for a week while I'm on the infusions. It has already eased off some but I'm feeling the high blood pressure go back up again. Forgive me if I'm not back for a couple days. I hope all is well with y'all.
Re: Dealing with MS after surgery...
Hi Michelle
I'm so sorry that you are having such a miserable time. I wish I could offer something constructive - but I can't. Hopefully you will start to feel better soon.
What lovely photos of your gorgeous family. I love that you have family traditions. I never did anything like that when I was growing up. It's the little things like that you remember all your life.
Sending you lots of good wishes.
Kia Kaha
(Stay strong)
Re: Dealing with MS after surgery...
Quote:
Originally Posted by
EllisM80
I get blood work done every 3 months. My vitamin D levels used to be super low all the time but my doctor and I have finally got it regulated. I take 1,000 IU daily. I had to take 5,000 IU daily for 2 months to get it regulated and then drop to 1,000 IU to maintain. I had to have iron infusions for 12 weeks also and then went on iron supplements for a year. Now my iron is fine. I take calcium supplements and vitamin c. I also take garlic supplements. I try to take all natural vitamins and less pharmaceuticals. :)
My levels in D get too low even with mega dosages and 10 000 u per day in between. It only gets better with "real sun" during Summer.
Iron infusion...had one in September, should have had more but can't with fever and I had a low grade fever since...October! And suplement by mouth seem useless.
Since July I have blood tests once or twice a month but it's mainly to check my ferritin and infections. D is only checked three times per year (insurance policy).
I've been taking supplements for year, but was taking a break from my omegas since my stomach was a mess. With the PPI I've been able to take those again (omega 3) and also curcuma, because my joints started to hurt a lot. It did help, but I also did change a few things in my diet to help decrease inflammation. Sometimes it's hard to know what's really helping!! But for sure, when my D is low, I get all cold/flue/viruses possible. Here with the anemia it's been worth than ever, I'm lucky I didn't get pneumonia again!!
Can wait for Summer!!!
I hope you will feel better soon!
Take care!
Re: Dealing with MS after surgery...
Quote:
Originally Posted by
KiwiGal
Hi Michelle
I'm so sorry that you are having such a miserable time. I wish I could offer something constructive - but I can't. Hopefully you will start to feel better soon.
What lovely photos of your gorgeous family. I love that you have family traditions. I never did anything like that when I was growing up. It's the little things like that you remember all your life.
Sending you lots of good wishes.
Kia Kaha
(Stay strong)
Thank you so much! My kids are my life so I try my best to spend every moment that I'm awake with them... my husband hates pictures but I make it a point to have them as much as I can get them. They are only little for a very short time! :)