• Dawn Could Use Our Support

    Posted by jen-cueva on December 16, 2022 at 12:59 pm

    I heard from @dawnt and wanted to share a quick update for all. She could use some support and encouragement as she waits until March to see the specialist again.

    Dawn says, “I’ve not been feeling well for a while. Mental health wise I’m actually doing pretty well. I’ve got a new therapist that I’m getting used to working with, in preparation for my long-time therapist’s retirement coming up at some point before November 2023. I had a scan done earlier this year and there was inflammation and damage in my lungs that wasn’t there before. I was noticing more shortness of breath, and got the ok from my ph dr to increase my oxygen. Since January I’ve actually gone from 4 lpm oxygen to 6 lpm oxygen, am now at 8 lpm. Even at 8 lpm it doesn’t feel like enough at times.
    The scan was repeated in June and the inflammation and lung damage seen earlier was still there. My ph dr suggested I see a lung specialist in Hershey because he felt it was my scleroderma causing the changes. He said if they wanted immunosuppressant medication started I’d need to see someone closer for monitoring the meds than making trips to Baltimore where he is located. Hershey Medical is ‘only’ two hours from home, while Johns Hopkins is 4+ hours.
    I couldn’t get in to see the specialist at Hershey until yesterday. She feels it is some involvement of scleroderma, but based on my overall inflammation in joints etc she wants more tests done because she seems to think there could be another autoimmune issue causing some issues. Now I don’t see her again until March, but she doesn’t want to start any immunosuppressants or anti inflammatory until she’s more sure what we’re dealing with.
    I tried gel knee injections in my knees earlier this year due to arthritis. They supposedly work for 6 months minimum for pain relief and lubrication, up to 14 months. I got relief for about two months. I was so disappointed. I ended up taking doxycycline a couple weeks ago for another issue, and after about five days my knees were feeling significantly better. I read up on doxycycline and found that it does have anti inflammatory properties. Unfortunately after I finished the prescription within 2 days my knees are back to being very painful. The dr I saw at Hershey Medical said anti inflammartory medication is a possibility but not until we know what has been causing these changes. Three months feels like a long time to wait for hopefully some relief and improvement. But, I waited a little over 4 years before finally getting the diagnosis of ph, so I guess three months is do-able! I liked this dr, feel she knows what she is doing for sure.
    All of this has left me very exhausted.”

    Dawn, we are sorry that you have noticed this decline, inflammation, and lung damage. It does sound like it could be something related to your scleroderma. Do you think that doctor would schedule you sooner if you continue to struggle with this pain? I would suggest that if you continue not to see any improvements. Anyone would be fearful and frustrated when the oxygen flow is doubled, and there is no relief. You’re not alone; we are here for you. I’m sending your positive thoughts, prayers, light, and love.

    carol-volckmann replied 1 week ago 9 Members · 21 Replies
  • 21 Replies
  • brenda-denzler

    December 16, 2022 at 7:57 pm

    Dawn, I am sending you gentle, distant hugs. << (((()))) >>. (That’s my arms wrapping around you over and over.)

    Brenda D.

  • jill-upshaw

    December 22, 2022 at 2:16 pm

    Prayers. None of us like to recognize a decline in ourselves or anyone else. I have been on 6L for a long time now. Hope they get to the bottom of the cause.

  • jen-cueva

    December 28, 2022 at 3:13 pm

    Thank you both, @brendad53 and @upshtcx, for your kind words and support to @dawnt. I hope you all are doing well and recharging after Christmas.

  • dawnt

    December 30, 2022 at 7:27 pm

    @brendad53, @upshtcx, and @jenc, I owe each of you a huge apology.  I truly appreciate your kind words, and support. I’ve started to reply a number of times to say thank you, but this current overwhelming exhaustion and just plain not feeling well is really beating me up. To me, though, that does not excuse failing to acknowledge a kindness from those dealing with their own issues but who still reached out to offer support.

    I’ve had all the bloodwork done that the new lung dr asked for, and had another ct scan a bit over a week ago. The recent scan showed more damage in my lungs since my last scan in June, a lot of inflammation/infection, and a new 8mm nodule. I sent a request to the new dr to confirm if she’ll be getting back to me once she reviews the results, hopefully with treatment suggestions, before my appointment scheduled in March.  I’ve not heard anything back yet, so will reach out again next week.

    Again, my apologies for my late thank you for your messages of support.  I hope you’ve all had wonderful holidays, and are doing well health-wise.

    • Colleen Steele

      January 3, 2023 at 11:21 pm

      @dawnt this is a safe place where we don’t judge one another or pressure people to share. We are always happy to hear from you when YOU feel up to sharing with us. Otherwise just know we will continue to care about you and will be ready to offer our support whenever you reach out.

      Considering the decline that is happening I’m surprised your doctor hasn’t reached out to you first and bump your appointment up sooner. Keep reaching out to him and update us when you feel up to it.

  • jen-cueva

    January 31, 2023 at 10:32 am

    Hey @dawnt, it’s been a while since I’ve noticed your updates. How are things going?

    Were you able to schedule an appointment sooner with your progression?

    Please know we are here and sending you extra love, hugs, and prayers, my PHriend. Take care of yourself, and know you’re not alone.

  • v-r-peterson

    February 1, 2023 at 9:07 am

    @dawnt, you’re in my thoughts and prayers. May you get the answers that bring you to better health and deeper breathing ASAP.

  • dawnt

    February 1, 2023 at 9:27 pm

    Hi @jenc, @mommabear007, and @colleensteele. Thank you for your thoughts and prayers. I tried to post a reply but kept getting an error – can’t post your message notice. Probably just as well, it was a very long post.

    I’m still not feeling well, but made it through our month of working in office. I just finally got to talk to the new lung doctor about all my test results two weeks ago, after many emails & calls to her office to try and get a response. Very frustrating, which I told her (nicely), and also let her know that I don’t want to wait until our next appointment in March to start any available treatment and get to feeling better. She said they were going to have a ‘conference’ meeting with her, my ph doctor, a rheumatologist, and someone who would assess the nodule found on the last scan due to the size of the nodule.  They will decide what they think is going on and what the best treatment options are.  She thinks it’s the ph & scleroderma acting up.  She said she should get back to me in about two weeks, which would have been today, but I’ve not heard anything yet. I sent an email this afternoon to ask when I can expect to hear from her.  Aside from just not feeling well, and exhaustion like I’ve never felt before this past year, my concern is what perhaps permanent damage has been/is being done since it’s taking so long to get answers and treatment.  I’ve even missed my Saturdays with the horses lately because I just haven’t felt up to it, and anyone who knows me knows how much being around the horses means to me.

    Hopefully I’ll have some answers soon, and be able to post without any error messages.  I hope everyone is doing well.


  • jen-cueva

    February 2, 2023 at 1:38 pm

    Hi @dawnt, First, I am sorry about the inconvenience of the error messages when you try and post. After taking the time and energy to type it all out, getting those can be frustrating. I did notify our tech team, so he is aware. However, I’m grateful you finally could post.

    I’m so sorry you are having such a difficult time getting responses back. Although it sounds like you are drained from everything physically and mentally, not knowing is the worst!

    I’m hoping and praying that you’ll hear from them by the end of the week so you can start on a treatment plan or whatever is needed to start getting some relief.

    Work must only add to your stress and exhaustion. Please know we worry about you and are here but understand that some days you just cannot make it to update. That’s OK, know when you are ready and need support, we are always here.

    I hope you have not missed your therapy appointments. Although the horse therapy also was a huge part of your joy. I am hoping you’ll get back to me. Now, those dang doctors better get in gear and have a plan.

    Sending you extra love and hugs my PHriend. Email me anytime, if you have issues posting or need me to share anything.

  • dawnt

    February 2, 2023 at 7:08 pm

    Hi @jenc.  If I don’t hear back from the new dr by tomorrow I’m going to send another email. Next week I’ll start calling the office again. I have been keeping up with my therapy, and am feeling pretty comfortable with the new therapist I’ve been working with in preparation for my therapist’s retirement. That is still going to be such a hard change, but it’s not like I begrudge my therapist retiring – I’m looking forward to my own!

    I will get back to posting more regularly. I can’t tell you how often I plan to do so, then by the time my work day is done it just feels like too much. I don’t remember ever having this level of exhaustion before. It’s very frustrating, but I’ve also learned that if I push it too much I pay for it in how I feel. It’s the same for pretty much anything I plan for after work or days off. I have great plans, but just don’t have the energy.  That is scary, and something that will hopefully improve with treatment. To be honest, there are days where it’s really hard just to get through the work day.  I’ve actually caught myself close to nodding off at work, which makes for very long days.

    I’m holding on to my hope that there will be good news soon, and treatment, and some progress toward healing from this past year.  Take good care everyone.


    • Colleen Steele

      February 2, 2023 at 9:10 pm

      @dawnt we will always be here for you whenever you have the time and the energy to reach out. Hopefully you know this is your safe space which means we understand when we don’t hear from you and will be supportive when we do.

      I will keep your medical transition in my prayers. Be kind to yourself!

    • jen-cueva

      February 3, 2023 at 12:09 pm

      Hi @dawnt, I’m so sorry you’re exhausted, and I know how scary this is. I’m keeping you in my thoughts and prayers as you work to get some answers and relief.

      It’s frustrating that the doctors aren’t getting back to you within an acceptable timeframe. I know you’ll keep hounding them if you have to. However, when you’re already so exhausted, it makes things so much more complicated and annoying.

      I’m grateful you are keeping up with therapy. I wouldn’t want this to push you back into a dark place. Please take care of yourself first. We are here when you have the extra energy to share updates and vent.

      I hope things start to improve soon and you get some relief from the exhaustion. Hang in there! <3

  • germaine-norwood

    February 2, 2023 at 11:51 pm

    Hi Dawn,

    I am sending you thoughts of encouragement. Thank you for sharing your story which reminds us all how challenging our health issues are and how strong you are in negotiating yours. By reaching out and having the courage to share your journey, you remind us of that bond. You are in my prayers.

    • jen-cueva

      February 3, 2023 at 12:11 pm

      Hi @mgnorwood, your words of encouragement to Dawn make my heart happy. You’re right; we certainly have that special bond in the forums.

      How have you been? It’s been some time since I’ve seen you update much.

  • jen-cueva

    September 7, 2023 at 5:45 pm

    I heard from our good PHriend, @dawnt. She is finally home after such an ordeal and needs our love and support. She has sent me a few emails, and this one recently; I was overjoyed that she is back home with her boys and her fur babies.

    Unfortunately, the treatments she was taking for a lung infection, which she did not have or need. Dawn said in her first email, ” I’ve been in the hospital and rehab and then hospital again. Kept feeling worse and worse, finally went to er 07/20/23. They admitted me, and I was there until 08/08/23 when I was transferred to a local rehab. The hospital got the vomiting and not being able to eat under control. The rehab was due to difficulty getting around due to muscle loss/weakness due to above and being inactive in hospital so long. I was sent home from rehab 08/17/23 but couldn’t get myself up from my toilet nor walker with a seat once home. I was advised to return to the er, and they admitted me again. That’s where I am now. It’s just going to take time and exercises to get totally back on my feet, but I’ll get there.”

    This morning, I received the update that she was finally home. In it, Dawn shares, “I’m finally home, came home from the second rehab last Friday. Had a small fall with my walker Saturday, didn’t hurt myself but couldn’t get myself up so had to call my sister for help. That fall and my unsteadiness really scared me. I have tingling, numbness, etc. on my arms, hands, chest, belly, legs (not from the fall, it’s been there). The legs bother me most because they keep me up at night. I’m not sure if there is a way besides getting the muscle strength back to help that or not, but I could use some solid sleep. My legs feel really ‘tight’ from the knees down, which also keeps me up at night.
    I have physical & occupational therapists and a nurse coming to the house for a while. They say I’m doing well, and I’m doing what exercises I can to help get strength back, but I’m struggling with how long this will take. My depression is definitely acting up, it was a noticeable decline in my mood and frame of mind once I got home and found how difficult and tiring just getting around the house, into bed etc is. I’ve reached out to my therapist and depression meds doctor, but am definitely struggling. Being with my boys finally is a bright spot.
    This was from the meds for the lung infection I didn’t have. The last month before we stopped them I couldn’t keep anything down and lost almost 50 pounds. Then it took some time to get the nausea under control so I could eat/drink again. Unfortunately the damage and muscle wasting was done by that time.
    Sorry for such a down attitude, Jen. I have so much fear about getting back to where I was physically before all of this. The doctors and therapists tell me I can get there, and I pray for the strength to do what I need in order to get back there.”

    Let’s show Dawn she is loved and missed; we are all cheering her on. My heart aches because I know how frightening it is to worry that you may not get to where you were. You will gain strength and remember that baby steps are progress. Much love, hugs, and prayers are with you, sweet PHriend!

    • Colleen Steele

      September 8, 2023 at 1:32 pm

      @Dawn , I am so upset to hear about everything you have been through unnecessarily! It really isn’t fair and the emotions you must be feeling about it are understandable. I believe you to be a strong person who will get through this both physically and mentally. Just be patient with yourself. As much as we wish we could run the path to better health the reality is, we must pace ourselves. You will get there my friend.

      We care so deeply for you here and want to help you through this. Please reach out any time!

  • dawnt

    September 15, 2023 at 2:07 pm

    Thanks Colleen. I am working on being patient with this healing process. I am seeing some progress with being steadier on my feet, feeling stronger in some ways with getting around. The home health care folks tell me I’m doing well for being so early in the recovery process. I’m still worried about getting back to where I was before all of this happened, and the tingling/numbness etc. concern me. I’ve been told, and have read, that it’s part of losing muscle and then needing to regain strength, but whether it will totally go away no one can tell me.

    • debbie-moore

      September 16, 2023 at 9:55 am

      Dawn just keep working at improving. Don’t think about where you were, just move forward. You have been through so much and it sounds like you are doing great. Keep it up!

    • Colleen Steele

      September 20, 2023 at 10:40 pm

      @Dawn, I can see where muscle loss could be causing the tingling and numbness. Just a thought, maybe ask if your vitamins B6 and B12 have been checked recently. It isn’t something doctors always check.

      A year ago, I was diagnosed with a severe B6 and B12 deficiency, causing tingling and numbness in my feet and legs. Perhaps with all that you have been through, you have developed this deficiency along with loss of muscle mass? Just a suggestion.

      Since taking B6 and B12 supplements my symptoms disappeared. But please check with your doctor first and see what he thinks.

      Thank you for taking the time to update us. It makes me happy when we hear from you!

      • carol-volckmann

        September 21, 2023 at 2:17 pm

        Hello @dawn, I just got back to the forums and saw what you have been through. I am so sorry that you have had and still have so many issues on going. No wonder you feel depressed and stressed out. But, you have been so strong through all of this and you keep keep strong when you know you have to be persistent in calling and calling for results.

        Many of your symptoms I am able to associate with – caused by Scleroderma! Scleroderma caused my PAH, bowl inconvenience, liver and kidney issues and SIBO.

        Having your team of doctors to include the Pulmonologist, Rheumatologist, gastroenterologist and your therapist really is crucial and you have done that, you have fought for that! I really admire your strength through this. I know it must be so exhausting for you, but reading through your posts, I also know you will do what is necessary and keep looking forward – baby steps.

        It is like when one of the horses goes lame – it is always a long way back and a great deal of patience and care – one step at a time.

        Dawn, warm thoughts, positive thoughts and prayers coming right your way. Be kind to yourself and keep moving forward. 🤗❤️


  • jen-cueva

    September 19, 2023 at 3:14 pm

    Hi @Dawn, I came to share your last update and was thrilled to see you posted. That in itself is an improvement, my friend! It sounds like each day, you are getting stronger. Try to continue to focus on moving forward, and you’ll see the improvements yourself, eventually.

    Your home health team are the ones seeing you most often, they are noticing the improvements as you work on getting stronger. My thoughts and ptayers continue to be wioth you, my PHriend. Thanks for taking the time and energy you are working so \hard to gain to share a brief update. <3

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