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    #16
    Fantastic! I like it when the worry is worse than the wart.

    Make sure your daily water intake is enough.

    Make your "good news smile" contagious

    Comment


      #17
      Update

      Hello friends! It has been nice to see the activity on a number of threads. Reading everyone’s posts truly helps me during the tough times of MS and other illnesses. It is so nice to sit in on my “online friends” chatter!

      Here are a few things on my side:
      - Liver enzymes levels are dropping (good) but still don’t know the cause of high levels. Still higher than normal or preferred range.
      - Continue to have abdominal pain. Comes and goes in intensity. Saw a pelvic pain doc....(all my docs think she is the best!). She said I am EXTREMELY tight in my entire pelvic area and is putting me on muscle relaxers and PT. Did not comment to whether this was due to MS, stress, or something else....to be discussed at next appointment at the end of November.
      - My left leg weakness from my April flair has NOT gotten better and some days it actually seems worse. Probably because I haven’t been exercising it due to abdominal pain...although I walk regularly. (No more than 1-2 miles per day with an average of 5-7 miles per week. NO hills and NO stairs in my walking exercise). I am sure the weakness in the left leg has cause compensation issues on my right hip resulting in some of the pain and tightness.
      - Most recent test showed blood in urine, need to touch base with pelvic pain doc next week about that. (What the heck!)
      - Cholesterol is high...I eat quite healthy so she wants a “calcium score” to see if this is a genetic issue. (Don’t totally understand this....need to research). Typically not covered by insurance.
      - Add typical MS symptoms...fatigue, numbness, tingling, tripping, concentration, etc.

      I am scheduled to be going back to work next week....and trying to decide if that is really the right thing to do. An option is to resign from my job to take care of my health and improve stress levels, but doing that feels weak...like I just wasn’t strong enough or a tough enough woman to handle a stressful and high level corporate position. Plus, I miss my old self...and I am trying to figure out who this new me is becoming with my medical issues.

      Financially: We will probably be ok long term, but as I approach 60 yrs old, it seems like we will never have enough funds saved. (Jules, I know you totally get this concern about saving enough....we too are avid savers!). Add the stock markets drop over the past couple of days too. The hard part is I actually love most parts of my job (really career) along with my customers and most of the people I work with....whether it should be or shouldn’t be, my work position is to me, part of my identity.

      Anyhow, my husband travels every week, so I am home alone this evening trying to process these coming days ahead and what to do or how to cope. This is a very hard time for me...especially since I still don’t feel too well, but at the same time I am not at all really, seriously sick. If you looked at me you would not suspect that I am struggling physically, as the pain and weakness is not visible...yet. (Although my girlfriend freaked when she saw me trip a couple times on my home’s stairs the other day ago.)

      Many thanks to you all, my MS friends, for listening....any comments, thoughts and experiences to share back are very much welcomed and appreciated! Thank you for being here for me!!
      Best to you all, MGM. 💕

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        #18
        So nice to see this and that there have been some positive especially lower even if not normal LFTs! If trace blood was the only thing in your urine that might not mean much so fingers crossed there. I love that you are still walking for exercise, so important for mood and physical wellbeing, imo.

        You know I feel ya on the job and saving things. I would have the same, probably misguided, concerns about being "weak" however when I realized your age that changes things. Its different for us older gals. We have been blessed with the ability to continue working and stoic to have fought the good fight. We are in the home stretch now and if our bodies say enough is enough I'm becoming more at peace with trying to enjoy what are likely our best years from a physical standpoint. Any chance of working part-time for the stimulation and a few extra dollars?

        Regardless of MS or not at 60 things are definitely on the down slope so I do think it is important to get some fun bucket list stuff checked off now. As I've mentioned before we are starting to travel more, taking photos and making memories that I will reflect back on if/when times get rough.

        The stock market will wax and wane so I try not to get too worried or heavily invested in it. Do you have or need a financial advisor to review? Crunching actual numbers is comforting to me, its a concrete way to either address or reduce my concerns.

        Please keep us posted and I will send good vibes your way! I believe we know deep down when it is time to tap out of the workforce and no shame regardless of when that needs to be.
        He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
        Anonymous

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          #19
          Thanks for the update.

          Glad to hear that your liver enzymes are dropping. Dandelion Root tea and milk thistle supplements ate two natural ways to help them continue to drop.

          Sorry about the high cholesterol. I switched to a no wheat no dairy no added sugar diet in June. Three or four days a week I even choose to eat raw vegan - fruits, vegetables, nuts, seeds mostly. ( And supplement with B Complex and B12). My cholesterol dropped from close to 350 down to 248.
          ~ Faith
          MSWorld Volunteer -- Moderator since JUN2012
          (now a Mimibug)

          Symptoms began in JAN02
          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
          .

          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

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            #20
            Waiting is the worst. And MS should at least give us immunity to something else, anything else. Feeling your pain. ❤️

            Comment


              #21
              Thanks Jules, Mamabug and MMMMS!

              Good news...high cholesterol is probably ok. Not too high and I did the scoring on line on WebMD and my overall risk is low. Also had a calcium score done last week and it was normal! Yay!

              Have PT for my abdominal pain scheduled for next week but haven’t yet gotten muscle relaxers. I so seriously need them....my abdomen is a huge knot.

              I am a bit nervous as I am headed back to work at my corporate job this week...very nervous as I still don’t feel too well with continued abdominal pain and fatigue. But technically there isn’t anything wrong with me....so...here I go.

              Howecer, this whole process over the past months is making me focus more on each day as it comes. People will ask me something about the upcoming weekend or plans or availability next week and I just don’t seem to have an answer. It has made me realize just how planned our lives are and how others expect our schedules and availability are supposed to be. I have to say, I have been living so much more in “a day at a time” mode...let’s hope I can keep that up when the pressure of a corporate job comes to play again. That said, I am keeping options open and if the job no longer feels like it is the best for me, I will have get up the strength to walk away.

              In regards to that: A friend recently asked me if my job is limiting my ability to experience true joy with my family...and honestly, I think it just might be. Most of the time I have to rest in bed for a big chuck of the weekend just to be able to work again the following week. If that continues to be the case, it may be time for me to move on. I just haven’t yet figured that out or gotten mentally to the ability to walk away from my career. The really good news is that my dear husband supports that and just wants me to do what I need to do to be well again!

              Just my thoughts for the day...thanks for listening.

              Comment


                #22
                MyGirlsMom - good luck as you head back to work this week.

                I do remember the days of working all week and sleeping/resting all weekend to be ready again for Monday. I felt that was all I did, work and sleep. I missed out on alot of personal time. I too felt that I couldn't walk away, that I would be giving in and was just not strong enough. My struggles were like yours, lots of "invisible" symptoms.

                I was forced to walk away when I could no longer recover for the next day, usually that would start happening on Thursday night, then moved to Wednesday night. So for me, I was forced into it. Again, I felt that I wasn't strong enough.

                But looking back, I can honestly say I fought hard and gave it my all. My family all thought I should have left before I did, but I wasn't ready.

                I was considering part time, but then would lose my LTD benefit and it would lower any future SSDI benefit if I went that route later. It was a big financial decision. If you aren't concerned with this, is part time an option for you? It may give you just enough balance until you retire.

                Lots of luck.
                Kathy
                DX 01/06, currently on Tysabri

                Comment


                  #23
                  Originally posted by pennstater View Post

                  I was considering part time, but then would lose my LTD benefit and it would lower any future SSDI benefit if I went that route later. It was a big financial decision. If you aren't concerned with this, is part time an option for you? It may give you just enough balance until you retire.

                  Lots of luck.
                  Pennstater- yes, I am concerned about going part time and if LTD is actullly really even available or should I just walk away. Perhaps I should reach out to the NMSS to learn more about that. My neuro says that my MS is mild, but it definitely impacts my ability to be my best at work. (Especially when I am in the phase of wrong words!! That can be a bit crazy!).

                  I started back to work mid-week this past week but still not quite well. I am now taking a muscle relaxer suppository for my abdomen nevery night as I still have discomfort and comstipation. I am also wondering if this med is making me a bit depressed (although I tend to have a hard time with the shorter daylight in the fall).

                  Pennstater- Did you go on LTD? How was that initiated? Did you use an attorney? There are two aspects in this: 1) financial 2) emotional loss of purpose and/or accomplishment.

                  Please know I appreciate any insight!! Thank you so much Pennstater! Best -MGM

                  Comment


                    #24
                    Originally posted by MyGirlsMom View Post
                    Pennstater- yes, I am concerned about going part time and if LTD is actullly really even available or should I just walk away. Perhaps I should reach out to the NMSS to learn more about that. My neuro says that my MS is mild, but it definitely impacts my ability to be my best at work. (Especially when I am in the phase of wrong words!! That can be a bit crazy!).

                    I started back to work mid-week this past week but still not quite well. I am now taking a muscle relaxer suppository for my abdomen nevery night as I still have discomfort and comstipation. I am also wondering if this med is making me a bit depressed (although I tend to have a hard time with the shorter daylight in the fall).

                    Pennstater- Did you go on LTD? How was that initiated? Did you use an attorney? There are two aspects in this: 1) financial 2) emotional loss of purpose and/or accomplishment.

                    Please know I appreciate any insight!! Thank you so much Pennstater! Best -MGM
                    Hey MGM - I did finally go out in SSDI and LTD with mostly "invisible symptoms". My LTD was initiated after 6 months of Short term disability (STD). This was based on the employer benefits and processes.

                    For both SSDI and LTD, I was denied initially and appealed both successfully. For the appeals, I had lawyers. One for SSDI, and a separate one that specialized in ERISA laws, which are the laws that govern employment laws, including employer sponsored LTD plans. SSDI attorney paid only if successful award, LTD lawyer was by the hour. Both processes wound up dragging out long, about 20 months LTD and 26 months for SSDI (from when I was eligible for benefits). Once granted, benefits were backdated.

                    There are separate forums that can give you insight. LTD threads are mostly in the employment forum. A few things:
                    1. SSDI definition of disability means that you cant do any full time work of any kind, not just your job/occupation.
                    2. LTD definition is based on the actual policy and may change with time. You really need a copy of the actual policy to determine. Mine had one definition for the first 24 months, then another after 24 months. Not only did the definition change, but at 24 months, if the cause was depression or anxiety, benefits were terminated unless institutionalized. Also important, STD requirements are often different than LTD. STD is usually much easier to get.
                    3. Document your struggles at work and impact at home. I kept a timeline in excel, just simple date type of problem, and documented the problem. I kept it brief, unless sonething really bad.
                    4. You need the support of your treating neurologist. So you should review your medical record and make sure it supports your filing. Even if not ready now, I recommebd getting your records annually and reviewing for accuracy. If you feel that it is not reflecting your issues, ask to update. Ongoing, I still keep a log, summarize it for neuro, pull out key dates and issues, along with my prioritized discusion topics for visit. I give him a copy and ask him to include in my medical record. This is to support updated disability reviews over time.
                    5. Since you have no way of knowing if successful or not on first file of claim, make sure to have savings to sustain you for the duration.


                    I don't mean to scare you away from disability, but just have your eyes open. Some people had no issues filing.

                    If you do have cognitive fog, you may want to consider neuropsychology testing. I had this done a few times. The results supported that MS fatigue contributed to changes over time in results, showing some deficiencies as a result. My neuro set it up.

                    Hope you feel better.
                    Kathy
                    DX 01/06, currently on Tysabri

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