Strike 2: How to Handle Disappointment

Strike 2: How to Handle Disappointment
The much-anticipated baseball game was a good day for me! That is a blessing in itself. Beforehand, I felt up to driving a couple of miles to get a haircut. Nothing adds to making one feel better than a haircut and style. Having already prepared for various scenarios — the excessive heat, exhaustion from walking too much, and a sudden headache — I brought a cooling towel, cool wraps (for wrists or ankles), NSAID, and Neurontin (for burning pain, headache, or just to take part of sleep med slightly early). I familiarized myself with elevators, ramps, bathrooms, and walking distance from Metrorail to the stadium. The ride was smooth, especially since it was a holiday week, and most stops required few people to board. The majority of those riding were dressed in baseball attire. I had to stand only at one stop, and that was just a few minutes. As we proceeded up the escalator to the turnstiles, I could see the room was mostly windows. It had been cloudy most of the day without any precipitation, but as we neared the door the skies opened up and it poured. Fortunately, leaving for the train a few minutes early prevented us from being drenched. As my husband looked up the current radar on his cellphone, I took a seat on the windowsill. I was joined by a woman walking with a cane and a man who needed to eat a snack to avoid getting hypoglycemic. In this instance, and earlier when my husband asked m
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16 comments

  1. LHOPKINS says:

    Thank you for your inspirational post. We have learned to be thankful for the little things.
    May the Lord be with you.

    • Lori Galpeer says:

      Thank you! You are very kind 🙂 I hope you are doing well these days and find many things to thankful for to compensate for the bad, trying days!!!

  2. StevefromMA says:

    Good for you, Lori. I hope the rain holds off next time and you see the game.

    There has been awful humid weather here, the worst for my burning, spasming, crushed-feeling legs and feet. It is extremely difficult to know that there are probably many daylight hours of this to get through before I can try to zonk myself to a not-good fibro sleep. You just have to keep remembering the days that are tolerable.

    • Lori Galpeer says:

      Thanks Steve, so do I! I will begin to think I am a jinx if it happens again LOL. Thanks for reminder to focus on the tolerable days. I love this time of year so if I have to be indoors for most of the day due to humidity I get a little depressed. Night time can definitely be difficult if the humidity is still pretty high; it is a toss-and-turn night for me when this occurs. It helps to have tv (even though frowned upon by sleep specialists – I need to have something to distract me from pain) and look at sweet hubby and puppy curled up next to me sleeping. 🙂 Hope you have many ‘tolerable’ days this summer!!

      • StevefromMA says:

        Lori, not sure where to post this, gave me little notice. I just heard that I will be on Ch. 5 news on Thursday at 5 EDT talking about my experience with fibromyalgia in a way that will hopefully get medical types and regular people to understand. It’s preceded by a few minutes of two separate interviews by blood test/cure (hopefully) creator M.D. and the MGH immunologist who will administer it way down the road. I haven’t seen anything. I was told it will be available on demand at WCVB.com and I may get a more direct link for it. If so, will post. Let’s hope a lot of people see it and I come across just as a regular person with a nasty under treated invisible pain disorder.

  3. Brenda says:

    As I mentioned last week, I am new here but everyday I have been thinking about the lady who is going to the baseball game and hopefully, all will go well for her.
    Now, I know this lady’s name is Lori and she keeps this site going. As well as Lori’s story and other comments, I know I am not alone. Healthy people take ordinary tasks for granted. Going out takes a lot of planning for us. Lori, I can certainly relate to the elevator issue. Unless, I am using a cane, I look fine and often feel uncomfortable to say to someone “I am disabled”. Fibromyalgia is not invisible but I do not go anywhere when I cannot walk or think or wonder what did I do that was so bad to deserve this.

    • Lori Galpeer says:

      Thank you for thinking of me and the kind comments, Brenda!! I hope that all will work in my favor to get another chance at going to a baseball game. I know what you mean about feeling uncomfortable to acknowledge you are disabled when to others you may look ‘just fine’. I sometimes wonder why many have the impression that you have to ‘look’ a certain way to be ill. Pls. don’t think you are being punished or somehow did something to create this illness. The sad truth is you were just being you. While there are various theories, the origins of this illness are unknown; part of the reason there are but a few standard treatments for it and everyone responds to them differently. Try to keep your head up – – I will not lie and say (after 21 years), I have accepted my life and its limitations or that I don’t still envy those who head off to work everyday or have the opportunity just to get up in the morning, walk/drive someplace and have enough energy to ‘do’ for a majority of the day without having to rest or ‘crash’ the next day . . . I do. It does get easier sometimes when you have gone through the process of grieving the old self/lifestyle and finding a lifestyle that still incorporates some of the aspects of your ‘self’ (hobbies, things that can still bring joy, etc.). Also talking/sharing with others who have FMS is a great help too! I am so glad that my commentaries have been of help and make you feel understood, believe me, there are plenty of others (unfortunately) that understand and can provide support and care too! BIG HUG! 🙂

    • StevefromMA says:

      Eek, Brenda, like Lori says, you have to step back here and think about FM as a physical disorder, not a punishment. Part genetic, part physical or psychological trauma, virus, bacteria, cosmic rays…no one knows but something you did is NOT the cause. That’s very self destructive thinking and you don’t deserve it! After 30 years with this, I am fed up and, lately, unbelievably pained with it as much as you can be but never have I thought I caused this in some way with my behavior. Please, see a counselor if you can’t stop unrealistically making yourself feel bad with this. I’m a psychologist and very familiar with how I and others respond to severe illness. Self blame is not the best response and is not truthful to the facts. This disorder is miserable enough, for sure. I hope you stay on these blogs and feel, in some way, part of a community. Some times I’m moved to tears about how my fellow fibies a suffer through crap and keep going but it helps me to know I’m not alone. Not only that, you folks are the only ones who exactly know what this is like and that’s very important to me, to feel some other people understand.

      Oddly, I am going to be on ABC News sometime in the near future being interviewed about my experience with FM and my hope for a new vaccine that Bruce Gillis, M.D., of Epicgenetics is trying to get FDA approval for. Dr. Gillis, then Dr. Faustman, who will administer the vaccine at Massachusetts General Hospital Immunology Lab when it is approved, and then I will speak in separate interviews. I have chatted with Dr. Gillis, who is sincere in his belief he can cure us, but I’ve never met either of these folks and I was certainly not compensated for being their spokesperson after Dr. Gillis asked me. In fact, I’m pretty nervous about millions of people seeing me interviewed in my home but I felt the weight of responsibility to present our disorder for what it is, a painful, challenging, and life changing experience, nearly life destroying experience, and I hope I got that across for all us fibies. I won’t know until it airs but I will post the air time on this thread and you all can let me know. I hope as many doctors and others as possible see it. I guess I won’t be just StevefromMA much longer LOL.

      • Steve, So happy that a real person with real fibro, will tell his story. You will be great !! You can be our voice (no pressure). Please do let us know when you will be filmed, and when we can see it.This is the best news i have had in a while. Hope all goes well ! Blessings to you.

      • Lori Galpeer says:

        How exciting to be on news! Pls. keep us posted so know when to watch! As a person with FMS, as well as a research scientist, I am interested in knowing more . . . was this tested on humans yet? Are you going to be a patient at a multi-site clinical trial or have the trials been done and just awaiting FDA approval to come on the market for rheumatologists to administer? . . . Know you will do just fine in getting our message across for you yourself experience and feel the same things we all do. You will be a ‘celebrity’ now in your hometown. People will say, “I knew Steve before he was on television. . .”. 🙂

        • StevefromMA says:

          A lot of good thoughts about pain and compassion here.

          Lori, I wonder how many people have seen this;I was told hundreds are signing up.

          http://www.businesswire.com/news/home/20170419005324/en/EpicGenetics-Assistance-Leading-Medical-Centers-Expands-Clinical

          Here’s my story. I’ll be interested in your opinion as a scientist about the study. I saw the article and will do anything above a Phase I study (I’m a scientist also) since, frankly, I’m desperate for pain relief. After some hassles, I paid about $1000. cash for the test because I couldn’t go thru insurance and risk being in the 7% false negative category and have my insurer deny me pain meds for the rest of my life ie. “you don’t have fibro”. (I recently called Epicgenetics and they submitted it for me to Medicare for reimbursement.) I had called Dr. Gillis for more info before I sent in the blood samples and spent a long time on the phone with him. He is a competent seeming personable guy and very convinced he will cure FM with one injection. So, I stopped doing anything that down regulated my immune system for a few weeks to make sure I “passed” the test you don’t really want to pass. I did come back positive and a few weeks later Dr. Gillis called me and asked if I’d go on national TV as a fibro patient, talking about what having a definitive test for it meant to me and what a cure would mean. I said yes because I’m a good speaker and I wanted to get the devastating effects of fibro out to a mass audience. I also live only a few hours from the only site so far, MGH, where they will administer the test. A local ABC affiliate spent a few hours talking with me and taping me at my house, a fibro sufferer in his native habitat, trying to present myself as a person in severe pain without looking too pitiful. It’s the summer and editing is apparently slow but the PR interface person will let me know when it will air and I will post here and any other FM portals I can think of, will take any suggestions for places to post (not paid for interview LOL) because I want as many FM other folks to see it as possible though I don’t know how they will portray me until it airs. There are as many FM theories as FM patients but I’m hoping Dr. Gillis is correct. I think he and Dr. Faustman are working on FDA a submission but it might take a few years 😢 it may be a Phase II study, though, because, oddly, it’s an off-the-shelf TB vaccine. I’ll stop here as my wife wants to know why I’m spending yet another Saturday reading and writing about fibromyalgia…

          • Lori Galpeer says:

            I will take a look at the article you sent me. I posted the last one about the day you are to be on TV – know you must be so excited! Is Channel 5 FOX? Channel 5 Local? If you can find a way to post it that would be great just in case unable to find it or have that channel. KNow you were great! 🙂

  4. Marita Mitchell says:

    I loved your day. Not only did you manage to do so much, you felt good about yourself.
    Those who don’t have chronic pain or the like really don’t understand that we plan our outings like a military campaign!
    I had two good days running, I went to the theatre and survived, no enjoyed, some wonderful music. And then today, already in pain from last night’s pleasures, travelled a three hour round trip, so that we could spend a few hours with our beloved son, who was only in town for a short time. The day was wonderful. I am exhausted and filled with pain, but I lived a little.

    • Marita, isn’t it wonderful to feel ‘normal” for a short time? We know the price we will pay, but sometimes it is just worth it.Not ready to give up on this yet. Can I get a yes ?

    • Lori Galpeer says:

      I am so glad that you had couple of good days, especially being able to travel to see your son. That type of event makes the crash day worth it just to get quality time with loved ones. Hope you get more good days!

  5. StevefromMA says:

    Hi Lori,

    Thanks for your optimism about the interview. It is supposed to be airing today at 5 PM EDT on wcvb.com, which is the ABC News affiliate, channel 5 in Boston, and should be available there live sometime during that news show or afterwards on that on demand. I wish I had a specific link but they didn’t give me one, maybe after it goes on air today. I wonder how long they keep something like that available, no idea. I’m not even sure how to copy or download it for myself.

    Good luck to every fibro person. Online are my only fibro contacts and they are few.

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