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Spoonie Forever – It’s Never Ending


I sometimes wonder, “was I ever healthy?”  No really, people always tell me, “you’re always sick” and I always defended myself that no I wasn’t.  I look back and they were probably right.  I was little and remember being in the hospital a LOT.  Then I was in grade school and I was well for the most part.  I caught every bug that went around and remember fondly having the chicken pox twice.  I have always been accident prone too but that’s all on me always in a hurry.  When I was pregnant with my son my only issue was I developed Hashimoto’s and that was after me saying I was so exhausted.  At first I was told, you’re pregnant and tiredness is normal but after a blood test that I thank my family doctor for doing, the thyroid antibodies test did we find out how bad my thyroid really was.  I knew my mom had a thyroid disorder and hers was relatively new but I ddint’ know that we both had the same autoimmune disease.  This was 1994 and Internet was still new and we had dial up and I wasn’t online even a fraction that I was then as I am now.  Hashimoto’s wasn’t something I’d heard about prior to then.  We knew my grams had a thyroid disorder and she had rheumatic fever and a few other issues as a young girl.  She also had some blood disorder where she had several blood transfusions when she had my mom.  I have no clue about my father’s family or should I say the sperm doner’s family history.  He’s never been part of my life and all I had was his name which was promptly changed when I married.  

I’m thinking because it’s been over two years that I’ve been off work and I’m not getting better but I’m not getting worse.  I can say that I’m NOT getting every but that goes around, my allergies have been in check but the autoimmune crap has been piling up.  

  • Hashimoto’s 
  • Diabetes – type 1.5 which is Latent Auto Immune Diabetes in Adults or LADA
  • Lupus – thankfully only mild but my skin, my heart, my liver are affected 
  • Fibromyalgia (not autoimmune but an accompanying issue)
  • Migraines ( migraines should actually be second in this list because they came before or around the Hashimoto’s)
  • Asthma – all my life – better at times and horrible at times
  • Allergies – seasonal but more so spring and fall

I’ve always been the type A personality where I do better if I have project going on.  Sure the exhaustion was always there but if something had to be done I fought through it.  I’m not good with pain and never have been. I remember my Ob/Gyn saying to me after my hysterectomy that if I ever got shot (I’m a polic officer) he’d be one of the first to see me because my pain tolerance was non-existent.  I begged to keep the morphine drip for an extra 24 hours.  It was a few years later I’d learn that it wasn’t me but morphine didn’t help me with pain.

I’ve had:

  • Tonsillectomy 
  • Two babies
  • Two ablations and a D&C
  • Hysterectomy
  • Shoulder repair from an on duty car accident with a slap lesion tear, rotator cuff repair and some arthritis scraping 
  • Appendectomy in which the thing was gangrenous (eww and yuck – don’t google)
  • Double First Metotarsal (MTP) fusion meaning both big toes were fused together because the joints were gone and the arthritis was brutal
  • Been hospitalized with a ruptured cyst on an orvary (10 days)
  • Hospitalized for pneumonia (a couple of times)
  • I’m sure I’m forgetting something

On days like today where I feel completely guilty because a migraine, anxiety and depression had me stuck at home in bed, drugged up to get rid of said migraine I think I should be with my family (the one I married into) but I know that if I’d gone I would have been in bed for more than the past two days.

I thank my lucky stars or guardian angels for my family, my mom, my grandmother (who is 92 and a hell of a lot healthier than me), my amazing husband and my children for all they’ve done for me in the past couple years. 

Today my mom brought me over popcycles, ginger ale and let my pupalups out while the rest of house was at the veterans memorial where they rang the bell for my father in law which is something they do for veterans who have passed.  My kidlets cleaned the kitchen and ran the dishwasher sometime between last night and the time I was finally able to make it to the kitchen.  We have a ranch, one floor and it’s not even 1200 square feet but I’ve made I’d from my room to the bathroom and that was it for the past 36 hours of the past two days.  I knew that the kitchen was a mess but it’s mainly put back together now.  

ASK for help – BEFORE you meltdown

I’ve missed so much since I’ve been off work on sick leave, now long term disability.  I miss my co-workers but I feel that no one really gives a crap because I don’t hear from anyone, I miss my friends and have to cancel plans regularly, I miss my family because again I have to cancel so much.  I am thankful to the online people in my life, my November ’97 crew (been friends since iVillage / Parentsplace, the Chronic Illness Bloggers (my world has opened up to people who GET this crap I’m going through), my fellow subscription box addicts and my immediately family and the pupalups.

I guess I’m coming to terms with the fact that I’m not the me I was or wanted to be.  I’m a new me and I’m learning how hard it is to keep being me since I was always happy, the one people went to and now I’m depressed and I need help.  I have a”poop guy” who cleans up after the pupalups once a week and I need a housekeeper to come in in once a month to deep clean the kitchen, bathroom and th floors.  


Have you accepted your limitations?  Was there something that you wanted to do before you became a spoonie and your body became your ruler?  I’m only 46 and so much I want to do, I’m sick and I have NO energy to go and do what I want alone and I fear my husband and I have different ideas what “retirement is to both of us.  What do you need to do to complete YOU?

I have more on the journey I took recently now that I’m back to feeling human again.  In the meantime, check out the video that my daughter made from our magical, exhausting trip to Curaçao.  

Curaçao Me and Se

mini2z … Journey with me

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3 Comments

  • Reply paws2smile

    A couple things came to mind when reading your post. First, I was diagnosed when I was 18. But my mom and I are learning so much more about all the symptoms and everything that we are thinking I had Lupus YEARS before I was diagnosed.

    Ugh dial up internet, I now feel old. Lol!

    I’m not sure which source my mom got this info from but she said she read that many Lupus patients, or autoimmune disease patients in general, have a Type A/overachiever personality. So yeah, very interesting fact.

    No longer hearing from co-workers or friends seems to be very common. And I hate it. 🙁 After 16 years with Lupus and I still struggle to try and not be pissed that my friends have forgotten about me or never check on me. I just don’t understand it… But as you mentioned, I am thankful for my online friends that I have found on blogs or other media sites that are in the same situation that I am in.

    I was suffering horribly from depression and pain a few years ago. My pain specialist had me see a therapist who works with people in pain and to start group therapy. I was so reluctant but it completely changed the way I now look at life. The group was called a DBT group and included people with various mental illnesses such as bipolar. They strive to make a life worth living. You learn different skills to use for your emotions, meditation, mindfulness, etc. I still struggle at times bit I am in a SO much better place than I was a few years ago. Maybe take a peek?

    2016-06-06 at 10:56
    • Reply mini2z

      I see a psychiatrist and a psychologist. My psychologist has one of her associates that’s starting a meditation group – small group and I’ve been invited to join. I guess I’m just feeling like, I’v worked with you all for over 25 years and thought some of you were friends but no one even calls or stops by. I ran into someone and she said they had no idea why I was off. I’m sure it’s, “OMG she has depression and we might catch it”. It wasn’t until I finally had the lupus that someone said, “you can die from that!” Then I still got hassled because of my sick time. I want to work, I want to be out and about but some days a shower is even too much energy.

      Thank you for the reply and I think my lupus and the diabetes all came on at once but my previous Rhuemetologist waffled about a diagnosis and kept the plaquenil from me. I’m now seeing a new one and she doesn’t want me to have blood work every three months unless I’m having issues and said six months is fine. I get my cortisone shots in my hips and she said she’s going to try a few places to try and give me relief.

      Xx Kristin
      mini2z

      2016-06-06 at 19:12
  • Reply brendaflippen

    I feel you. Those “friends ” that seem to forget you, butt pop up at those strange times are just hurtful. I am so done with people I know personally. Or maybe they are done with me.?? Idk but on-line friend’s seem much easier to have In my life right now. I Have mourned the loss of work friends and those that you think will be there forever. I think I am through with it. We will see.

    2016-06-09 at 00:36
  • Thank you for visiting me at mini2z ... Journey with me and I hope to see you often xx

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